How to build a Life History?
What can I use to compose the story?
How to analyse participant narratives?
How to present the reader with the nal
draft of the Life History?
Inspired by the experiences of the author
Anabel Moriña, this book addresses the
main doubts and longings of researchers
who wish to explore the exciting jour-
ney of (re)constructing stories and hi-
ghlighting voices, especially those who
have them silenced by society, through
attentive, sensitive, scientic listening.
With this purpose, the authors tell the
impacting story of Beatriz who, after
suering a brutal assault, is faced with
blindness at 28 years of age. The reader
can follow and be moved by this cons-
truction, get to know the roles played
in which researchers and participants
maintain an attitude of equality, mutu-
al collaboration, respect and proximity,
which makes this method essential for
the explicitness of trajectories of strug-
gles and confrontations.
LIFE HISTORY IN QUALITATIVE RESEARCH:
Alves e Silva
the case of Beatriz
In this book, the reader will become familiar with the step-by-
step method for using the Life History method in qualitative re-
search. In a clear and objective way, the authors expose practical
examples of each instrument that makes up the method and be-
yond, the analysis that best corresponds to this type of collection
and the nal format of the text edited in thesis, dissertation, etc.
Taking into consideration the questions that emerge at the time
of collecting, analysing and writing the life history and noting
the scarcity of literature in the area, this is a guide that brings to-
gether all the stages and mishaps that the future researcher may
encounter in the process.
Programa PROEX/CAPES:
Auxílio Nº 396/2021
Processo 23038.005686/2021-36


Life History in Qualitative Research:
the case of Beatriz
Ana Paula Ribeiro Alves
Nilson Rogério da Silva
Ana Paula Ribeiro Alves
Nilson Rogério da Silva
Life History in Qualitative Research:
The Case of Beatriz
Marília/Oficina Universitária
São Paulo/Cultura Acadêmica
2023
UNIVERSIDADE ESTADUAL PAULISTA
FACULDADE DE FILOSOFIA E CIÊNCIAS FFC
UNESP - campus de Marília
Diretora
Dra. Claudia Regina Mosca Giroto
Vice-Diretora
Dra. Ana Claudia Vieira Cardoso
Conselho Editorial
Mariângela Spotti Lopes Fujita (Presidente)
Célia Maria Giacheti
Cláudia Regina Mosca Giroto
Edvaldo Soares
Marcelo Fernandes de Oliveira
Marcos Antonio Alves
Neusa Maria Dal Ri
Renato Geraldi (Assessor Técnico)
Rosane Michelli de Castro
Conselho do Programa de Pós-Graduação em Educação
- UNESP/Marília
Henrique Tahan Novaes
Aila Narene Dahwache Criado Rocha
Alonso Bezerra de Carvalho
Ana Clara Bortoleto Nery
Claudia da Mota Daros Parente
Cyntia Graziella Guizelim Simões Girotto
Daniela Nogueira de Moraes Garcia
Pedro Angelo Pagni
Auxílio Nº 0039/2022, Processo Nº 23038.001838/2022-11, Programa PROEX/CAPES
Parecerista: Profa. Dr. Maria do Carmo Baracho AlencarUNIFESP (Campus Baixada Santista)
Capa: Canva (uso gratuito)
Título original em Português: História de Vida em Pesquisas Qualitativas: o caso de Beatriz
Ficha catalográfica
Serviço de Biblioteca e Documentação - FFC
Alves, Ana Paula Ribeiro.
A474l Life history in qualitative research: the case of Beatriz / Ana Paula Ribeiro
Alves, Nilson Rogério da Silva. Marília : Oficina Universitária ; São Paulo : Cultura
Acadêmica, 2023.
185 p.
Financiamento: CAPES
Inclui bibliografia
ISBN 978-65-5954-399-1 (Digital)
ISBN 978-65-5954-400-4 (Impresso)
DOI: https://doi.org/10.36311/2023.978-65-5954-399-1
1. Estigma (Psicologia social). 2. Cegueira. 3. Educação especial. 4. Identidade (Conceito
filosófico). 5. Ciência Metodologia. 6. Pesquisa qualitativa. I. Silva, Nilson Rogério da.
II. Título.
CDD 371.904
_____________________________________________________________________________
Catalogação: André Sávio Craveiro Bueno CRB 8/8211
Copyright © 2023, Faculdade de Filosofia e Ciências
Editora afiliada:
Cultura Acadêmica é selo editorial da Editora UNESP
Oficina Universitária é selo editorial da UNESP - campus de Marília
Summary
Presentation………………………………………………………7
Preface | Lucia Pereira Leite …….……………………………...….9
Introduction…………………………………………………….11
1 The Development Of The Life History.......................................17
2 The Choice Of Participant………………………….………….27
3 In-Depth Interviews………………………...………………33
4 The Instruments……………………………………………….51
A Day In The Life Of
Self-Report
Lifeline
Interview With Other Informants
5 Narrative Analysis.......................................................................65
Holistic Look
Eye Focus
Thematic View
A Chronological Look
Subjective Look
6 The Life History Of Beatriz........................................................85
Normalcy
Assault
Disability
Conclusion………………………………………...…………..179
References……………………………………………………..181
7
Presentation
Already in the master's study, completed in 2018 (ALVES,
2018), the Life History method aroused great interest and, in fact, it
was the methodological path chosen and followed with some
difficulties, but also with rich learning experiences. The Life History
method carried out at the time with two participants with intellectual
disabilities underwent methodological adjustments that considered
their specificities and was inspired by Rosana Glat who, in 1989, used
it with women with intellectual disabilities who elaborated on their
lives at a time when it was not common to hear their voices (GLAT,
2009). Since then, the interest in the method has not decreased,
rather, it has increased to the extent that the knowledge about other
authors who have used it in different ways has also evolved,
highlighting among them, Anabel Moriña (MORIÑA, 2016).
Life History is a method with the necessary depth to
understand human conflicts, especially those that are silenced and
remain at the margins of society. However, the richness of this
method and the diversity of instruments that can be used to compose
the life history is little known, which generates doubts about its
performance, validity and scientificity. In view of this concern, still at
the beginning of the doctoral course I attended the discipline entitled
“TOPICOS ESPECIALES: Investigar con historias de vida en estudios
con personas con colectivos vulnerable” taught by Professor Anabel
Moriña, from Spain, which took place at UNESP/Marília in the
second semester of 2019.
Anabel has experience and extensive knowledge about the
different possibilities of the method. Her publications published in
8
Spain, where she lives, in the field of Special Education became a
reference for this study, opening new paths and a new look for use in
the collection for her doctorate, originating the text that gave life to
this book, whose aim is to help researchers who want to appropriate
and deepen their knowledge through listening to human life stories.
Based on this assumption, what we propose in this study is
one of the different ways of researching with this method beyond the
standard widespread model, with diversified instruments detailed
herein. First, a brief presentation of the Life History method in
qualitative research is necessary, as it is a promising field of
application.
9
Preface
Science has sought ways to better understand the human
being, in a way that encompasses the richness of its behaviour and
subjectivity. Various methods have been employed for this purpose,
since the intention is to improve life conditions in society. Such
attempts occur both in the individual sphere and in social processes
and focus on the arduous mission of building a plural and universal
society, which has as its foundation the respect and welcoming of
different ways of thinking and acting in a common coexistence,
seeking to legitimise the citizenship of all.
Qualitative studies are emerging on the scene and gaining new
formats in investigations in the field of Human and Social Sciences
in order to get closer to this commitment.
The Life History is brought to light, which has been
configured as a robust methodological procedure to enable
researchers to know in depth the trajectory of lives in a rather unique
way. With this, there is the possibility of sharing experiences loaded
with idiosyncrasies, allowing the researcher, in an intense joint dive,
to investigate and unveil with property the narratives that date and
mark the human subjectivity of the participants. In other words, it
allows us to apprehend in the speeches the human movement in a
particular way in its intensity. Making use of such a procedure makes
it possible to identify and analyse these social processes.
This book is a surprising read, as it provokes a mixture of
thoughts, anguishes, breaths, and reflections. In the pages that
follow, the authors bring the richness of Beatriz's narratives, a woman
10
who abruptly becomes blind at the age of 28. From that date
onwards, crossings occur in her life, implying considerable changes in
the most diverse spheres.
How to talk about disability and its implications in a context
marked by stigma and prejudice? Can life be interrupted and lived in
another way, as if we died and were reborn into the same person?
Does the rupture with who you were, with your friends, your work,
your relationship with your family, your dreams, and fears cease to
exist or start to be configured in another way? Would it be possible
to have a new identity?
These issues, and many others, are brought up in detail,
allowing the reader to act as a spectator of a life full of singular
movements that imply the daily life of people with disabilities,
allowing us to observe that, even after the enactment of a series of
norms and policies deemed inclusive, it is clear that there is still a long
way to go before we can get away from a position in which we have
little respect for bodies and behaviours considered different.
The book presents us with an ethical and careful posture of
the person conducting the research, with due concern to ensure
attentive listening. Through the presentation of questions, it gives the
participant the opportunity to revisit events and also to think about
future actions, shifting the gaze from the self to the wider context
during dialogic moments.
Gathered in the following pages, it is possible to find
information about the procedure steps in the use of Life History and
its adjacent instruments, which, in this case, bring a digression of
what constitutes the becoming of a blind person, who needs to tread a
new human constitution in such a challenging universe.
Lucia Pereira Leite
11
Introduction
The qualitative approach brings out the relevance and
materiality of the word of the individual, author of his experiences,
memories and identity, becoming a powerful tool capable of entering
the universe of identity, meanings, practical and everyday knowledge
that permeate the relationships, which allows the identification and
personal and cultural reconstruction of such experiences (BOLIVAR
& DOMINGO, 2006).
The authors also add that it is through language that due
relevance is given to the discursive dimension of individuality, how
the human person experiences and means events of his/her life. In this
sense, by telling their own experiences as a person with disability who
lives in a given society, culture and time, who works, faces and adjusts
to the standards, allows them to be interpreted and (re)meant,
constituting a peculiar and promising perspective of investigation.
According to Bolivar and Domingo (2006) this includes subjectivity
as a necessary condition for social knowledge which, by means of a
dialogue with oneself and also with the interlocutor, seeks the
construction of new understandings and meanings about reality,
beyond those imposed and obvious, expanding the narrative and
dialogical “I” to the relational and communitarian nature.
This implies knowing how the person of a certain group,
whose voice has been silenced by the dominant standards, behaves,
reacts and lives within the social norms constructed for her/him.
From this perspective, what Bolivar and Domingo (2006) called
12
cultural portrait is created in which through the subjective accounts
of a person (representative of a group) one reflects on experiences,
conflicts, values and daily life. This approach may also use the reports
of other informants, who will compose a polyphony of voices,
enriching the knowledge and understanding of the reality presented.
In this study, the qualitative research based on personal
narratives was adopted as a principle through the Life History
method, which aimed at valuing and including the subjectivity of a
disabled person who experiences situations of stigma in society.
Moriña (2018) lists the six main characteristics of this type of
research, the first being the priority given to listening to the voices of
people who are commonly silenced and excluded from the scientific
discourse. It is emphasized that this voice assumes a protagonist role
in research, since it is not spoken or researched about it, but it is
spoken and researched with it. The participant has the right to be
heard when telling experiences lived by him in his own words
according to his perceptions and have his voice playing a leading role
in the academic discourse.
The second characteristic occurs in the role of subjectivity,
recognised and valued in the understanding of reality from the
experiences of the person who narrates his/her life. The researcher
needs to be faithful to the meaning that the participant gives to his or
her life, being seen as an expert witness of the history reported,
constituting an access route for others to know and interpret it
according to the subjectivity of each reader (MORIÑA, 2017). In this
strand, the role of the researcher is considerably rethought to actually
include subjectivity and understand the experiences and situations
that are told from another perspective. Thus, the participant is not
reduced to just an object of study, disappearing in its personality.
13
Rather, this participant has life, voice, and participation that are
recognised, and valued. Given this, their narrative may be placed in
the academic text in first person, emphasising that we are not
speaking for them.
The attentive listening to those who for a long time had their
discourse disregarded intends to guarantee and value the subjectivity
of the participant and requires a type of analysis that contemplates
such choices, which refers to the third characteristic of the Life
History method: the narrative analysis of the data. It is necessary,
according to Moriña (2018) to contemplate the narratives in their
entirety, without fragmenting them, since the analysis produces
stories and seeks singular aspects of a life, revealing its unique nature.
However, it is important to emphasize that the subjectivity of the
participant will not be the only present, since that of the researchers
will inevitably be incorporated into the interpretation and analysis
performed, as will be detailed in a later topic.
Continuing, we come to the fourth characteristic that relates
to the role of the narrator as an active participant and not just an
object of the study. This type of relationship built between
participant and researcher puts both in new roles rarely experienced
in scientific research: the first assumes the protagonism and has his
narrative valued as capable of causing social change and the second
loses the traditional position of power of who alone takes the decision
of how to conduct the interviews and analysis causing a change in the
way the production of knowledge is understood. Thus, researcher and
narrator are placed in a position of equality when intervening together
in the study, making explicit the social acceptance when the narrator
goes from object to active participant in a dynamic relationship of
14
constant learning and transformations between both (MORIÑA,
2018).
It is noted so far the democratic character of this type of
research, which leads us to the fifth feature of the method: the
emancipatory dimension in which it seeks to empower the participant
to act in research. The intentionality is beyond the mere description
and interpretation of the world, it seeks to cause social change
through the narrative method, bringing the voice that previously
inhabited the silence to act as an agent of social and personal
transformation. This interview structure can cause discomfort by
rethinking roles and concomitantly ensuring that both parties feel
comfortable and close enough to share beliefs, experiences,
vulnerabilities (MORINÃ, 2017; 2018).
From this perspective, the researcher is a channel for them to
share their skills and abilities with a view to empowering the
participant to also act and contribute throughout the process from
collection to final disposal of the work, promoting their
empowerment in research. The researcher also assumes a position of
empathy through respectful listening to the participant's ability to
explore and determine their limits and possibilities (MORIÑA,
2017). By assuming a new role and a new way of doing research, the
researcher is disentangled from the traditional role of an expert
interpreter, distant and impartial. When the role of the researcher is
transformed, the role of the participant is also transformed and,
consequently, can transform contexts around him/her, triggering the
emancipatory process by questioning roles throughout society
(MORIÑA, 2018).
In view of the five characteristics exposed above, it is pertinent
to highlight the sixth one, which is a key element of everything that
15
has been exposed so far: research ethics. According to Moriña (2018)
ethics is the vital part and refers to how we should behave in relation
to the person with whom we are interacting, a concern that should
permeate the entire process of developing research.
Especially in research based on narratives, the ethical issue
becomes complex and involves two different dimensions: procedural
ethics and practical ethics (MORIÑA, 2018). The first refers to the
legal procedures when it comes to research with human beings, i.e.,
about the Research Ethics Committee, being necessary its approval
before starting the collection. The second dimension is related to the
ethical tensions and conflicts that arise during the course of the
research in the interaction with the participant, and these may be
different in each study, phase, and context. The most common issues
that may emerge in research with narratives are about the anonymity
of the participant and about the information chosen for publication,
since this may fulfil an inverse role of further stigmatizing the
participant, which is obviously the opposite of what is desired.
In view of this synthesis of what the Life History method is,
we appropriate and share the thought of Anabel Moriña (2017; 2018)
who defines it as a type of research more in line with democratic,
emancipatory and inclusive models and which enables greater
involvement and proximity with the participant by not recognising
him/her as a mere object to be studied, but as a person with an active
voice, playing a leading role throughout the study. Thus, working
with life history implies not only describing and interpreting, but
transforming personal, social, human realities. However, it is not a
simple path, being even more challenging when questioned in
relation to scientificity, objectivity and representativeness, which
leads the researcher to feel “swimming against the hegemonic tide”
16
(MORIÑA, 2018, p.11). From this perspective, we will explain in
the following topics the paths that such methodological choice led to,
as well as the difficulties, challenges, directions, and achievements.
17
1.
The Development of the Life Story
The field in which the Life History method has been used has
been increasingly broad, encompassing researchers from various areas
of knowledge, however, there are still doubts regarding the different
ways of performing it, being important to know the model adopted
in this study. Moriña (2017) clarifies the difference between Life Story
and Life History since they are often confused, which leads to
misunderstandings, including the validity of the method.
According to Moriña (2017) the Life Story is a biographical
narrative that a person makes of his entire life or part of it through
unstructured interviews in order to capture his perceptions, that is,
the story of a life, the way the person tells it. The participant assumes
a passive posture when narrating his or her life, but does not get
involved with the way in which this information will be treated and
the researcher is limited to stimulating the narratives and listening to
them. In this model, the only source of information is the
participant's account, which in turn is published without any editing,
that is, without spelling or other corrections, preserving the linguistic
characteristics of the narrator in the way it was transcribed.
Life History, on the other hand, is more comprehensive and
includes the Life Story as one of the tools to reconstruct a story
without, however, being limited to it. It is about reconstructing a
story as it is experienced (and not just told) and the participant's
account, the main source of information, may not be presented to the
18
reader in its literal form of transcription, but after edits that ensure a
pleasant and understandable reading to the reader without, however,
altering the meaning of what was said. When we mention edits, we
mean spelling corrections for written language and contextualizations
that may include other reports that complement parts of the
participant's speech and also a new organization of everything that
was said, aiming at a sequence and continuity that is sometimes lost
in oral language. To (re) construct a story, it is therefore necessary to
use other sources to complement and contextualize the account
presented, such as documentary evidence, historical data, medical
reports, interviews with other informants, photographs, texts,
observations, among others, with the intention of enabling an
intertextual and inter-contextual analysis.
In Life History, there is a change in the roles played by
participant and researcher. The former changes from a mere narrator
of his life to an investigator, participating actively in all research
processes, for example, in decisions about how his story will be
presented, what information will be published or not. The second
also undergoes change when, in addition to simply listening and
stimulating the narrative, it places itself at the service of the
participant, enabling him to act and become involved with the textual
and contextual construction of the research. In this perspective, the
life story is constituted in the final text that reaches the hands of
readers with all the processes of reconstruction, editing and
participation, without, however, losing validity as long as it is clearly
explained in the method of the study everything that was done.
It is possible that the researcher and participant build the life
history in two ways: the entire life trajectory since birth or by the
thematic life history in which we delimit cuttings of life in relation to
19
a period or theme of their history that will be explored in depth, the
latter being performed in the present study in which we will present
the story of a person with disability in facing stigma. We then follow
the steps for this construction.
The first step was the choice of how to work with personal
narrative and the second of opting for a single life story and in-depth,
respectively, in this order (PUJADAS, 2000; MORIÑA, 2017).
Narrative can be understood as the way of using language or
another symbolic system to interpret life events respecting the
temporal and logical order, establishing coherence between past,
present, and future. The narrative is the representation that the
participant makes of his life at a given time and context, allowing
researchers to transform it into a life story through a methodological
treatment in which it builds a new account in joint work with the
participant (PUJADAS, 2000).
It is also up to the researcher to stimulate the participant in
his narratives, guide him when there is any lapse in memory, and
maintain the direction by the topic of interest. It is inappropriate to
interrupt the narrative, but it is necessary to be sensitive to what is
important to the participant and that needs to be said and respectfully
listened to, even if not published. However, sometimes, from these
unexpected and uninterrupted reports, themes emerge that become
valuable and relevant information for research.
It is important that the interviews be preferably carried out in
the participant's own home because memory is the central point of
the narrator who can relive and revisit experiences with the help of
photos, personal diaries, videos, objects, in short, support supports
that take him/her to different contexts and times and that help
him/her to compose his/her story.
20
Pujadas (2000) suggests that to outline the work, the
researcher creates four files that ensure the completeness of each
interview session, leading the same to explore, comprehensively, every
aspect of the narrated story. They are “Literal, Thematic,
Chronological and by Persons”, this implies that in each interview,
the account will be transcribed and organized in these files: first the
literal record of the interview sessions that the researcher performs
with the participant; then, the fragments referring to each title cited
as emerging themes thematic; the order in which the facts happened
chronological; and the people mentioned by the narrator, allowing
the researcher to realize before the next interview, possible lapses and
discontinuities that can be filled people.
When starting the new interview, the researcher should revisit
with the participant by means of written text or excerpts from the
transcript the main aspects covered in the previous conversation,
which shows all the commitment and interest in what is being said,
besides providing the participant with knowledge of the written form
that their reports have acquired, also allowing them to comment,
correct or add something if desired.
It is worth emphasising that the participant assumes a
position of co-author of the work constructed, being the main figure
in the whole process. Being a co-author includes, among other things,
having the right to choose the very image that is being built through
their accounts and that will be made public. Thus, the participant
will need to recognise himself in the transcriptions of his narratives
and may not accept the literal form of transcription with the common
mistakes and vices typical of oral language, but prefer that there be a
correction to the standards of the written language. This does not
mean that the meaning and content of what he said will be altered in
21
any way, but only that care is taken to respect the participant's desire
to avoid exposure and the non-recognition or embarrassment of what
was transcribed.
In addition, the care taken in not publishing the report
without prior corrections is due to the fact that if we did so, we could
further reproduce the stigma towards the disabled person. In this
sense, the verbatim transcript stored in one of the four files is for the
use of the researcher and will not be published without first going
through an editing of the written language norms and the approval
of the co-author (PUJADAS, 2000).
The second step was the choice of working with a single life
story, that is, with a single participant. This choice is due to the fact
that with a single participant, it is possible to dedicate time and depth,
numerous and detailed interviews until the topic of interest is
exhausted, and the story is (re)constructed, which is not possible with
many participants. It is a mistake to consider that the
representativeness criterion is given by the quantity of informants and
not by the quality and depth of the discourse in development.
According to Moriña (2018), this type of approach requires
the researcher and the participant to spend a lot of time together, at
first gathering the data and then discussing the results, which is a
slow, intense and deep process of involvement that requires several
meetings. From this perspective, the researcher's sensitivity is
necessary to perceive the moments to respect the personal space of the
participant, such as medical visits, work, activities and personal
problems that overwhelm him or her and make it impossible to be
present at scheduled meetings, even if it results in the extension of the
process of conducting and analysing the interviews.
22
Given the above, it is recommended that the research should
be designed with small samples, which is an important characteristic
that defines research with Life History. A single case or at most three
participants would be desirable, since a larger number would not
allow the necessary depth (MORINÃ, 2018; PUJADAS, 2000). It is
emphasized that although there is a single protagonist, there is a
polyphony of voices, i.e., other testimonies that accompany the voice
of the protagonist of the study.
After the knowledge of what it is and how to work with
narratives and with a single story, we come to the moment of building
the “life history” itself. Building a single life story is far from being a
simple process because it is necessary to find a participant who has
the ability to develop a cohesive and in-depth discourse about his or
her life, faithful to the events as far as possible (since it depends on
memory and own interpretation of the facts) and critical enough to
be a representation of all those who face the same circumstances.
Thus, it is possible to realize that the choice of the participant
becomes the key factor for the success of the construction of life
history because he is the central figure of the study and on him will
depend on all its path, since, however skilled the researchers may be,
they cannot “create” history, being dependent on the way it is lived
and told.
This does not mean that people with difficulties in expressing
themselves should be excluded from research with narratives because
although they require more strategies and instruments that assist
them in the composition of their story, as an example, the use of
photographs, extended time, interventions, among others, they can
reconstruct stories that need even more to be told and heard (ALVES,
2018; MORIÑA, 2017).
23
Besides the choice of a participant who has the desire to
narrate his experiences, it is necessary that he has the time available
for the several and exhausting interview sessions that will compose his
life story. This is perhaps one of the main challenges of the researcher,
to keep the participant stimulated and involved enough so that he
does not get bored and give up in the middle of the journey, does not
lose confidence in his interlocutor, keeping him close enough to feel
the desire to confide his life. There are also circumstantial obstacles
that may emerge in this path and that are independent of the
researcher and perhaps of the participant himself and may interfere
or even interrupt the entire long process, but this will be detailed
further on.
It is important to emphasize that the life story is, therefore,
the final text that reaches the hands of the reader, resulting from all
the edits and extensive processes through which the initial narrative
with co-authorship of the participant went through. It is necessary for
the reader to be aware that there are other ways of developing the
method such as, for example, the style with micro life stories, in which
there are several participants with parallel or crossed stories and the
interviews are brief and conducted in a short period of time, rely on
few instruments or only the report and can be collected by several
researchers (PUJADAS, 2000; MORIÑA, 2017). However, we will
stick in this book only to the single, in-depth life history model,
which demands time, proximity and varied instruments.
It is noteworthy that the process followed for the editing of
the life history involved classifying all the information in files in
literal, thematic, chronological and people order; always resume the
transcriptions before the next interview so that any lapse or
discontinuity could be identified; use photos, texts, objects of the
24
participant to compose the account of his story; share with the
participant the written form that the work is acquiring in order to
obtain his consent, criticism, correction, or suggestion; make
adjustments in the writing of the accounts, minimal so as not to
compromise their meaning and style, but sufficient not to embarrass
the participant in the public image that will give of himself, ensuring
the reader fluidity in reading, according to the suggestions of Pujadas
(2000) and Moriña (2017).
In the construction of the story of this study in question, there
was a combination of strategies with emphasis on the report of the
participant based on her memory and interpretation of reality and
also reports from family members, client, and teacher who
contextualised/complemented and reconstructed the facts, as well as
other instruments, printing different interpretations for the same
situation, which will be explained below.
At the end of the life history, the researchers had the task of
expressing their subjective interpretations of the narrated accounts.
This implies reflecting on the systems and categories that society
builds to stigmatize people with disabilities, on the participant's ways
of coping and that put her in a position of struggle, often lonely. The
struggle of the participant in question may represent the struggle of
all people with disabilities stigmatized by society and provide
opportunities for understanding, reflection and discussion on stigma.
Before we discuss the next topic, it is worth presenting a
synthesis of the main choices that involved the outlining of the
method used, highlighting that they are in Table I, below in italics
and underlined.
25
Table I: Methodological choices.
Types of Life
Histories:
Number of histories:
Multiple Reports (several participants)
Single report
Depth of data collection:
Micro life histories (with fewer instruments and
interviews in a short period of time)
In-depth life history
Range:
Complete life history (complete trajectory since
birth)
Thematic life history (focus on stigma)
Source: Own elaboration, based on Moriña (2017).
26
27
2.
Choosing the Participant
In order to contextualize the reader, this chapter will present
the participant who will illustrate the application of the method, as
well as the reason for the theme addressed. The interest in talking
about the topic of stigma arose from the Master's study (ALVES,
2018) in which we identified the importance of work for the human
development of the research participants, two people with intellectual
disabilities. It was found that work contributed to the differentiation
of their trajectories, which contradicted what society commonly
expects from people in their condition, i.e. the inability to work.
However, it was possible to identify several situations in which work
also contributed to their stigmatisation in the work environment, as
well as to identify the presence of strategies that those participants
used to deal with these issues, a subject that could not be covered due
to the object of study defined for the master's degree.
After the master's study, the theme work continued to be an
important criterion for the doctoral research, since this environment
may facilitate the propagation of stigmas built about the abilities of
the person with disability, and therefore it is of interest to know the
strategies used when faced with the reality built by others about their
identity (Goffman, 2008). According to Goffman (2008), the person
with disability seeks ways to deal with stigma, and may withdraw and
accept passively fulfilling the role expected from her or face it in an
even aggressive way, causing reactions to this position. In the work
28
environment, as a result of face-to-face relationships, the social
construction of their identity and the opportunity to (re)build their
true identity are revealed.
The focus was on coping strategies created or provided in and
by work, however, the life context of this participant was not
disregarded, her previous experiences to work, disability and the way
she experiences stigma, which certainly constituted her and
contributed to the way she positions herself in the present, therefore,
important for the understanding of who this person is.
In view of the above, the criteria that led us to choose the
participant were: being a person with disability, regardless of whether
congenital or acquired, and who developed some work activity.
Moreover, we sought a participant with availability and interest in
maintaining an active participation, for a long period and sometimes
exhaustive. Thus, this is a convenience sample in which the
participant involved was not randomly selected, but intentionally
selected so as to meet the objective and criteria of the study. The
knowledge of the history of the chosen participant happened through
a common friendship that mentioned her as a possible candidate to
meet the interest of the study.
We had only one participant, as previously explained, a 37-
year-old woman, with blindness acquired at the age of 28, fictitiously
named Beatriz preserving her real identity. Beatriz has a complete
high school education and professionalization courses taken before
and after the disability. She currently works as a massage therapist, a
profession she chose after her disability.
In the first phase of the interviews, Beatriz lived with her
parents and sisters, besides a very close aunt, in a house next to hers.
In the second phase (the phases will be clarified further on) Beatriz
29
got married and changed residence, obtaining more privacy and
comfort. In the new residence, she acquired more autonomy when
she started cooking and taking care of the house independently, since
she is alone during the day, the physical space also better met her
needs when she got a room reserved and exclusive for her services to
clients.
The participant was asked to focus on her adult life at work,
especially because she understood that it is the environment that can
propagate stigma the most, according to Goffman (2008).
Before getting into the object of interest of the study, which
was her experiences as a person with disability dealing with stigmas
about her, we needed to understand life as a person who did not deal
with stigmas, difficulties, limitations arising from disability. Her life
path was marked by a “before and after” and we sought to know the
before disability in order to understand the after. In the first
interview, therefore, we talked about life as it was lived without
disability. From then on, we started conversations about a certain
period of life, the thematic life history, as the participant experiences
it.
Without further ado, it is important for the reader to know
who Beatriz is and why she was considered for the study and, in turn,
why she considered participating in the study. Beatriz was not only
accepted by the researchers, but mainly, she accepted the researcher
with whom she would maintain a close and trustworthy contact. As
previously mentioned, until the age of 28, she was considered a
normal person, without disability and followed her trajectory marked
by work, dreams and plans until they were abruptly interrupted by
an assault that resulted in her disability. In 2008, she was brutally
attacked by a cousin who suffers from schizophrenia, who broke her
30
face in half with hammers, tearing out an eye, nose, breaking the
bones of her face, which almost led her to death. Among other
consequences, she lost her sense of smell, taste, part of her hearing
and movement of her left hand, as well as her sight.
Besides the consequences already mentioned, Beatriz deals
with another stigmatizing factor, the disfiguration of her face. Even
going through several facial reconstruction surgeries, she doesn't have
one of her eyes, and the other remains closed, once the eyelid fell on
her. She has lost her eyebrows and her nose has been replaced, but
without fulfilling its original function because Beatriz doesn't breathe
through it and doesn't have the sense of smell. She has scars on her
arms and legs which remind her of the appearance of burns due to
the removal of skin for grafting her face. The forehead region presents
a depression (sunken), consequent of the destruction of the bones,
besides feeling a lot of pain in the face. He has lost facial expressions,
complaining that sometimes people do not realize whether he is
expressing feelings such as joy, sadness, or irritability.
According to Beatriz, her face scares people and, as a result,
she tries to hide it by wearing glasses in large sizes, dealing doubly
with the stigma, for not having the sight and for having an image that
distances herself from the beauty standards built by society. Beatriz
reinvented herself in all areas of her life according to her new identity
and role in society, among them, her professional life.
After conversations with the person who mediated between
us, we set up a meeting and Beatriz, from the start, showed herself to
be solicitous and interested in participating. This first contact was
somewhat informal, just to get to know her personally and make the
first impressions about whether she was, in fact, the person we were
looking for in the study. On meeting her in person, an interest in her
31
story was definitely born and on learning the purpose of the study,
the desire to contribute with her story was born in Beatriz.
32
33
3.
In-Depth Interviews
The in-depth interview, also known as biographical interview,
is one of the instruments used to compose the life story, but not the
only one. However, it will be treated in emphasis for understanding
it as the main instrument, the others will be explained in later topics.
Working with open and in-depth interviews, i.e., without a script of
structured questions, requires the researcher to stimulate the narrative
of the participant so that he can elaborate it in a chronological, clear,
detailed and reflective way about the events of his life leaving explicit
his interpretation of these (MORIÑA, 2017).
The narrative of the participant must respond to the objective
of the study and even if the participant has the freedom to speak freely
about what he/she deems important, it is necessary to be cautious so
that it does not completely detract from the theme of the study and
lose its meaning for the research. Therefore, the importance of total
concentration of the researcher on what is being said, the stimuli
provided, the phrase that will trigger the narrative, the guidance when
there are memory lapses, the sensitivity to identify during the
conversation what needs to be deepened in the narrative and the right
time to clarify doubts or encourage the deepening of something.
Working with the in-depth interview in this study had as a
favourable and decisive factor for its development the specificities of
the participant, who demonstrated since the first interview to be
willing and able to narrate her life with a wealth of details and
34
reflections. However, the fact that the interview does not have a
structured script of questions does not imply the absence of direction,
of a theme, of a guideline. This implies having a clear idea of what is
sought in each interview or expectations in relation to the dialogue
that is presented to the participant by means of a single sentence or
question that will guide him/her on what is expected of him/her in
each session. With each interview, the participant moves forward in
the chronological time of their life story by reminiscing and
reconstructing with their narrative, as well as in the research topic of
interest.
Before moving on, it is necessary to clarify how the
construction up to the moment of the interview went. The first
meeting was somewhat informal in which we did not mention the
research, although the participant already knew of this intention. We
arranged an afternoon coffee at her home in the presence of the
person who made the link between us and her family. The fact that
we were introduced through someone known and trusted by the
participant may have facilitated our interaction and, therefore, the
option to hold this meeting with the presence of the mediator.
We had a second meeting, again at her home, and then we
talked about the research. I explained thoroughly about the study,
explaining its objective, theme and how her participation would
happen. I explained that there could be many sessions, that we would
discuss painful subjects for her such as the day of the assault, that she
would have participations and activities to add to the study and that
she could withdraw at any time if she thought it pertinent. I also
described the importance that her collaboration would have for the
study. After these aspects were clarified, the participant immediately
35
expressed her desire to participate. However, I asked her to think a
little more and to answer later on, and she did so.
After the two initial meetings, the collection began and the
first interview and participation through narrative actually occurred.
It is important to clarify that before the beginning of the collection
that happened two months after the first contact, we maintained
proximity by phone, establishing a bond and building a relationship
of trust so that we would not be strangers at the time she would talk
about her life.
In the first interview I asked permission to turn on the
recorder and after consent I again explained the purpose of the study,
how her participation would take place and the importance of it,
asking if she would agree to collaborate. Again, the participant
expressed her interest and authorised the recordings, which allowed
me to obtain her verbal and recorded informed consent. Still on the
first interview, we talked about her life before the disability, what she
did, what her plans were, how she lived, what she worried about. This
interview lasted two hours and thirteen minutes and the sentence
which triggered the narrative was “I would like you to talk about your
life when you did not have a disability”. It is important to emphasize
that the researcher in an open interview may ask questions when
something is not clear enough or ask the participant to talk a little
more about something to deepen it, without inducing answers.
Strategies such as repeating something that the participant himself
said also stimulate his narrative and show that you are attentive to
what he says.
As there was already some proximity, her narrative happened
spontaneously, as in a conversation, going so far as to forget the
recording and tell intimate things of her life, which suggests that the
36
maintenance of contact and attempt to build the bond before the first
interview may have contributed to the interaction. The fact that at a
certain moment, she had forgotten that the conversation was being
recorded generated discomfort in the participant, which led me the
next day to call and clarify again that only what was of her approval
would be published. This consideration of her discomfort generated
trust on the part of the participant, and in a clear and honest manner
we gradually built a bond of trust and ethics.
Closeness and trust is a strong characteristic of the life history
method and there may be times when the participant, taken by the
emotion of his narrative, speaks more than he would like others to
know, besides the researcher. However, the ethical issues in this
method are beyond the consent document signed at the beginning of
the research and the researcher has the sensitivity to respect the fine
line between being faithful to the narratives and being cruel to the
participant by publishing information that may later lead him to
unnecessary exposure, embarrassment and even stigmas, and this is
precisely what we seek to confront. In this way, even if “consented”
through a document, it is necessary to have constant agreements,
reviews, opportunities to continue or give up and above all, to
maintain commitment to the person who narrates, considering
him/her not as a mere object of research, as well as awareness that not
everything that is said will necessarily be published.
At the end of the first interview, I asked her to choose the
name by which she would be called in the study to keep her
anonymity, since no one better than herself to know which would
best represent her. “Beatriz” was the chosen name because, according
to her, it is a sweet name and that she had always found beautiful,
thus being able to represent her. We also agreed on the frequency of
37
our meetings, days, and times of the week, always respecting and
adapting to her routine and availability. It was agreed that the
meetings would take place once a week, in her own home, for an
indefinite period of time, at 2pm on Mondays, with flexibility in case
Beatriz had any commitments or indisposition. The days, frequency,
times, and place were decided exclusively by Beatriz, since as a
researcher, I was at her complete disposal.
A week after the first interview that took place in a calm and
spontaneous way, we conducted the second one and this was a
moment of great tension on both sides. In this interview, we would
discuss the day when her life changed, which we named “The day of
the assault” so that we could understand how Beatriz acquired the
disability.
Before this tense conversation, I had already transcribed the
first interview and prepared a text to recall the main aspects we had
elaborated on the week before so that she could assess whether the
researcher was understanding her, whether the information was
correct, whether she approved of the writing. In this text, the main
aspects discussed were contemplated, however, it also included the
subjectivity of the researcher who selected points that impacted her
more deeply, also bringing an interpretation of the same. It was read
to the participant who, at the end of the reading, was surprised with
the way it was, in her words, well understood and represented, stating
that the researcher really understood what she intended to express,
especially in relation to what she felt in certain situations. She was
also reassured to note that the intimate subject she had spoken about
in the previous meeting, and which had caused discomfort later on,
had not even been mentioned in the text. She did not change or alter
the information, and her satisfaction with the moment of reading was
38
evident. This reading instigated Beatriz's interest even more in the
presentation of her life story, the processes she would go through and
its final format. Beatriz asked questions, and we made agreements
about the text, such as writing in the first person, the edits, placing it
in a chronological order to facilitate the reader's understanding, the
corrections, among others.
It was possible to realize that reading interpretative texts about
her narrative could be an important instrument to be explored, once
Beatriz felt respected, valued and surprised with the interest and care
with everything that was said during the interview. In fact, the
moment to read about what we had talked about became something
Beatriz looked forward to in the following meetings in which she
always praised, was surprised and moved. She listened to the reading
attentively, in an almost absolute silence that was only interrupted
when she smiled, cried or nodded her head in agreement, whispering
something as if she were talking to herself. From a simple summary
to remember significant topics of the transcription of the previous
conversation, it became a kind of gift, reward, or stimulus for Beatriz
who appreciated the texts about her life.
It was also important to set the mood for the subject that was
to come. The trigger phrase was, “I would like you to tell me how and
when you lost your sight. Would you mind remembering that day for
me?”. Beatriz spoke for two hours and forty-seven minutes without
interruption. No stimulus was needed for her narrative, just an
outstretched hand to touch her at the most difficult moment for her.
Although it was clear that she could stop the conversation at any
moment and that she didn't need to talk about what she couldn't or
didn't want to, Beatriz didn't stop. She talked, got emotional, got
scared by the thunder of the rainy afternoon and by the barking of
39
the dog that was lying under the table at our feet. She ended her
narrative on an intense note when she brought out her emotions,
while being highly impactful for the minute details with which she
exposed the violence she had suffered.
This was the most important interview, not only because of
its content, but also because it was the most difficult for the
participant to revisit her fears and also for the researcher to conduct a
moment of pain that would be decisive for Beatriz's continuity or not
in the research. Recalling and reliving such a terrible day stirred her
emotions, traumas, and feelings. After this interview, she went back
to dreaming about the aggressor who could not even pronounce her
name during the narrative and, as a consequence, started to avoid the
researcher.
On the day scheduled for the third interview, she forgot her
appointment, and although I called her at the gate of her house, called
and sent messages on her mobile phone warning that she was at the
gate, it was her father who answered and called her. On this day, I
noticed she was distant, so I suggested we should postpone the
interview, but Beatriz insisted on continuing until we finished it. I
read the text from the previous interview in which she told about the
assault, and it was a moment of intense emotion. Before the reading,
Beatriz made sure her niece wasn't around, so she wouldn't hear her
because of the violent content. When writing this text, specifically,
there was a concern in not highlighting the aggression itself, which
was minutely detailed by Beatriz, but the feelings, uncertainties,
perceptions arising from it, making, as far as possible, the moment
less fearful for the listener. The information about the third and next
interviews were not described on that occasion so as not to extend
40
ourselves too much. The reader will find them further on, told by
Beatriz herself in her Life History.
On the day scheduled for the fourth interview, Beatriz called
a few minutes earlier and cancelled, without much explanation. We
rescheduled it for another day, and again she cancelled, showing
resistance. It was necessary to give the participant this time of two
weeks without interviews, to respect her distance and silence, to
understand that, at that moment, she could not talk about herself,
even though I always emphasized that I was at her disposal to talk to
her, even if not for the research, even if not with a tape recorder. They
were days of tension for realising that the participant was in conflict
and could give up.
When Beatriz felt comfortable enough for a fourth interview
that would take place a fortnight later, there was a need to review her
consent and choice to participate. Again, I asked if she really wanted
to continue collaborating, even in the face of the last conversation
and how it reverberated in her life. Beatriz answered that she would
like to continue and that even though she had relived difficult
moments, talking and reflecting on the subject was doing her good. I
proposed that our meetings should be spaced more apart, every
fortnight so as not to overburden her, but she preferred to continue
with weekly meetings. I asked her if she would like to change
anything in the dynamics of our meetings, to which she said no.
When she read the text of the last conversation she was moved
by her own story and the way she was being understood, but she still
felt distant, as if we were regressing in the complicity we had built up
until then. It was then that I asked her to write her Self Report (which
will be detailed in the next topic) about the reasons that led her to
choose her profession and I sent her my own Self Report about why
41
I was doing a doctorate so that she could know a little more about
me. Beatriz called me days later saying she had read the Self Report
and was thrilled to know me a little further and to be able to
understand the dedication to research. From then on, our bond,
commitment, and involvement with the research was growing, which
led us to overcome the most difficult interview and also the obstacle
that was still to come.
Thus, our subsequent interviews happened with the same ease
as the first one, but with increasing proximity in which I could
identify the meanings of every gesture, pause, sigh, and even when I
would seek my hand placed at the table. In all there were six
interviews and in each one Beatriz would ask about the progress of
the research, about the transcriptions, about the writing, about what
and how it would be published, and we would negotiate how
everything would be presented. Beatriz approved the idea of speaking
in the first person and asked me to correct any possible language
mistakes in the text, although she expressed herself well and easily.
Table II: First interviews conducted
1ST INTERVIEW
Duration:
Two hours and thirteen minutes
Topic of interest: What was life like before the disability.
Trigger phrase: “I would like for you to talk about your life when you did not have
a disability”.
Participation: Beatriz narrated her life since childhood, her teenage years, and
her youth when she started working, remembering what her plans and dreams
were.
Beatriz was tasked during the week to think of a name to protect her identity,
and to choose an object that represented her life before disability.
42
2ND INTERVIEW
Duration: Two hours and forty-seven minutes
Topic of interest: How did she acquire the disability.
Trigger phrase: “I would like you to tell me how and when you lost your sight.
Would you mind recalling that day for me?”.
Participation: She elaborated on the assault, describing everything that
happened on that day and the following days. She told about the day, a year
after the aggression, when she knew that she would, undoubtedly, no longer be
able to see with the eye that was left. She recalled moments of pain, uncertainty,
insecurity, and fear of what her life would be like. She described feelings of
helplessness, revolt, hopelessness and also gratitude for being alive.
3RD INTERVIEW
Duration: Three hours and five minutes
Topic of interest: The changes in daily life and relationships after acquiring her
disability.
Trigger phrase: “Could you talk about whether anything has changed in your life
after losing your sight?”.
Participation: Beatriz told about her daily difficulties, about the changes in her
relationship with her family and friends, about people who distanced themselves
and others who became closer after her disability, about the ambiguity of
sometimes being treated as incapable and sometimes being demanded to have
skills as if there were no disability.
She mentioned friends who started to ignore her when they meet her on the
streets and on social networks, as well as people who do not make room for her
to walk on the pavement with the guide, sometimes even knocking her down.
She also shared moments in which she herself throws her cane to the ground in
protest when she is abruptly diverted by those accompanying her so that she does
not bump into others, questioning who should be diverted.
43
4TH INTERVIEW
Duration: Two hours and six minutes
Topic of interest: The way she is perceived by society, according to her
interpretation.
Trigger phrase: “Today I would like to know how your social life is”.
Participation:
Beatriz recounted things she used to do that currently make no
sense to her, also about leisure choices that meet her needs. She reflected on the
change in her attitude towards society when she started to worry about issues
that previously went unnoticed, as well as the change in society's attitude
towards her after becoming a person with disabilities.
She discussed the ambiguity in the way she is perceived by society, which
sometimes labels her as a “warrior”, sometimes as “that poor thing”. She also
mentioned the lack of unity among people with blindness regarding the fight for
their rights.
We agreed how and when we would do “A day in the life of Beatriz” which took
place a week after the fourth interview.
Source: Elaborated by the author.
Always at the end of the meetings, I announced what we
would talk about later so that her anxiety would diminish, and after
we had a cup of coffee, moments in which we talked about everyday
matters and about the researcher, talked about her family members
and laughed which reaffirmed us equality of roles, trust, and
proximity. Beatriz always knew that even if she said anything beyond
what she wanted others to know, it would not be published, repeated
or said by the researcher, even in our informal afternoon coffee
conversations.
It is important to describe these details and difficulties to the
reader so that they understand that they are possible and susceptible
in in-depth interviews due to the degree of proximity, of coexistence,
of time that participant and researcher spend together when
44
reconstructing the history of a life, this proximity being one of the
main characteristics of the method. In addition to weaving questions
and collecting answers, there is an involvement, empathy, and the
researcher deals with a fine line between exaggerated intimacy,
proximity and sufficient trust, whose imbalance may interfere with
the progress of the work. The nuances arising from the singularities
of the life history method prove its democratic, inclusive and human
character. Below, Table III presents the reader with a section of one
of the texts read to Beatriz before the new interview:
Table III: Excerpt text read before the third interview.
In the previous meeting, we discussed the object chosen to represent the
whole phase discussed in the first interview. The guitar named Ariel brought back
memories of good times in one of the best phases of a twenty-year-old girl, full of life
and expectations. Ariel was forgotten for a while, until Beatriz brings it back, with
all the childish joy and excitement. Ariel makes us think about words that motivate
or, on the contrary, can bury desires or dreams. It was like that when her father told
her that she wasn't good at it, that she should stop making annoying noises. After
these words, Ariel was set aside, discouragement took over what before was
experimentation and possibility, and, just like so, silence occupied the space that once
belonged to tones, chords, song, singing, and music.
Then we talked about the day of the assault and mainly about the days that
followed it. Beatriz begins by telling me that that day seemed ordinary, like any other.
It was just another day when she woke up, cleaned the house, went to the
supermarket, bought some bread. Another day that she used her computer, chatted
with friends, answered a phone call, made plans and took a shower. A day that should
have been like any other, but didn't end like this.
Something broke through all the normalcy of that day. A loud noise. A
fright. An evil look. A brutal assault, no explanation, no deserving, no understanding
of why, no possibility of defending herself. But that day was only the first of many
difficult days, days of pain, days of fear, of insecurity, of not knowing whom to trust.
The first of many days that are not normal in the life of a twenty-eight-year-old girl.
45
Beatriz, the fearful and quiet girl, the quiet and shy teenager, the young
girl with friends, plans, and work, on one particular day, perhaps the worst of them
all, buried all her dreams within herself. That day was the one day when she lost the
last hope of carrying on a bit of the versions of Beatriz from before […].
On that very day, at that very hour, the Beatriz I know today was born:
strong, yet generous, capable of silencing her screaming, placating her anger, hushing
her crying, disguising her pain simply so that her aunt could stop crying. So strong
that she is capable of consoling when she should be consoled, of understanding the
other and putting herself in their place, when in fact she should only be understood
and let others put themselves in her place. Strong enough to reinvent herself every day,
to make new plans, to live with a trauma without leaving sweetness aside. She has
become strong, but has not become severe […].
Many challenges would still arise in her path. How to deal with people who
victimise themselves almost disrespectfully and trivialise the brutality she suffered?
How to deal with people who blame her as if she had done something terrible enough
to deserve what happened to her, as if she had offended or deceived the aggressor, as
if the torturer could be the victim and the victim assumed the role of the culprit? How
to deal with comparisons, as if it weren't challenging enough to become a person with
a disability?
We talked about fears and helplessness. We discussed friends who have left
and others who have come. We talked about how hard it is not being able to see
herself, not having a picture of her own face. We laughed a little at some people's
reactions to seeing her face. Today, we laugh about it, but one day this used to bother
her. She cannot help but relive so many moments of pain and uncertainty in surgeries,
hospitals, with doctors, nurses. Moments of such pain that it inevitably gave rise to
the anger “Why?”, “Why me?”. But even without an answer to that question, she was
able to calm herself by saying “Thank you, for being with me!”.
We ended by talking about a very special person. We are talking about a
saving angel. A seventy-nine-year-
old angel, with a white head, slow steps, but
capable of stopping an aggressor. A friendly and loyal person, who respected her
autonomy, who praised her crochet, who trusted her niece so much that she would
allow a bath at the most fragile moment of her life or a simple undoing of her bra
strap. A person who sat beside her just to look at the horizon and who would not
leave her in the dark even when she could no longer see the light, making a point of
46
turning on the lamps when it was getting dark. Preta was the type of person that we
rarely meet in life, and with whom Beatriz had the privilege of living.
And so… I got to know a bit more about Beatriz!!
Is there any information you would like to expand or reiterate?
Source: Elaborated by the author.
Going back to the interviews, when we were more engaged
and used to the usual commitment of the meetings, a historical
context significantly marks our interaction and interview. The world
is facing, at the time of this writing, a Pandemic (Covid-19). This is
a respiratory disease caused by the SARS-CoV-2 coronavirus with
high transmissibility and severity, being adopted the isolation in
quarantine and, under this condition, as the safest option to preserve
both the participant's and the researcher's safety, the decision was
made to suspend the interviews. On March 23, 2020, our interviews
were interrupted with the decree of the governor of the State of São
Paulo for people to stay at home. How to go through a phase of social
distancing when using a method that requires intense proximity to
the participant? This was the big question that arose and needed to
be overcome with strategies, just as was the crisis during the most
difficult interview that focused on the assault.
Forty days after the last interview, Beatriz and I considered
the idea of doing it by video call. However, it was necessary to
consider Beatriz's specificities, her vision is through touch, her
attention requires silence away from external noises. During the
interviews we were alone, doors and windows closed so that nothing
interfered with her reasoning and hearing and when she wanted to
call the researcher for a dialogue, ask about something or simply find
some comfort, she sought the back of my hand with the palm of hers
47
and found it always stretched out on the table waiting for her or at
other times, her hand rested on my shoulders. I could see his signs of
tiredness or discomfort when he stretched his back on the back of the
chair and then, as a researcher, I knew it was time to stop. How would
these details be perceived by a video call? How would Beatrice
communicate with the researcher without touching her? How would
we ensure that noises would not impair the dialogue?
We decided to wait for the end of the social distancing to
resume the interviews, although we spoke daily by phone, messages
on WhatsApp and e-mail. Beatriz was informed about the progress of
the writing, even the readings, she read a published article authored
by the researchers, she also worked on her life line that will be later
detailed.
Five months have passed since our last contact in person and
with the relaxation of isolation we resumed face-to-face interviews,
but following safety protocols such as the use of mask, alcohol and a
certain distance. During this period, Beatriz got married and went
through a change of residence, experiencing new experiences,
challenges, greater autonomy and independence.
In the professional area, Beatriz also expanded her skills
during the time she was away from her patients, learning new
techniques in an online course on Reflexology. To learn the contents
of the course it was necessary to create strategies and count on the
help of another person who visualised the movements, applied them
to Beatriz, who in turn practised on the person. As a result of the new
knowledge, she extended the massage period, adding new movements
and using other instruments such as therapeutic stones, besides
creating a more comfortable environment to be attended in a private
room.
48
Despite the new format of relationship, more distant than the
one we were used to, we found new ways to express the complicity
between both of us and had greater privacy and silence necessary for
dialogues. It was not difficult for us to pick up where we left off, since
we remained active both in contact and in the involvement with the
research throughout this period of distance, that is, close even though
we were distant. As a demonstration of this closeness, Beatriz decided
to fully present herself and, in a gesture of full trust and acceptance
with her interlocutor, removed the glasses that covered most of her
face. In Table IV below, we present a summary of the interviews
conducted during the relaxation of isolation:
Table IV: Interviews conducted after relaxation of isolation.
5TH INTERVIEW
Duration: Two hours and forty-six minutes.
Topic of interest: The role of work in Beatrice's life and the relationships
established in it.
Trigger phrase:
“I would like for you to talk about your work, that which is
important to you”.
Participation: Beatriz begins her statement by telling us how much she missed
her work during her isolation period and how much she had reduced the number
of appointments, even with the relaxation.
She spoke about the training she received before disability and after disability,
reflecting on the differences between ways of learning and understanding
massaging as a process.
She told about the importance that work has in her life, especially in the
psychological aspect, about how she deals with those who mark her for mere
curiosity, about the reasons and the moment when she chose this profession.
She reflected on how disability could be considered as an advantage in her
profession, specifically, and on how much more resourceful she herself felt by
not seeing the body of the other with her eyes.
49
Beatriz closes her speech talking about the feeling that work gives her of being
useful and helping others, when the opposite usually occurs in other areas of her
life.
At the end of the conversation, Beatriz announced that she wanted to reveal her
face, removed the large glasses covering it and introduced herself to the
researcher.
6TH INTERVIEW
Duration: Two hours and four minutes.
Issue of interest: Do you identify situations where you have experienced stigma?
And do you/ how do you cope with these situations?
Trigger phrase: “I would like for you to tell me if you have ever experienced stigma
and how you reacted to it”.
Source: Elaborated by the author.
50
51
4.
The Instruments
The Life History method is endowed with several
particularities that significantly differentiate it from others. One of
these is the way in which the interviewee participates, which is why
they are called “participants” or “co-authors” rather than “subjects”
of the research. This implies that the person in fact will have
knowledge of and active participation in the entire research process,
including decisions such as how their story will be presented to the
reader.
There was intense participation of Beatriz in several moments
of this study, such as in the in-depth interviews, in the decisions about
which information would be published, as well as the form they
would take. Beatriz was informed about the whole process from the
transcriptions to the final presentation and made choices such as
speaking in the first person, having spelling corrections in her speech
when passing it to the written form and aspects that could not be
published. Besides these, the final edition of her life story was
previously subjected to her consent and approval.
Beatriz participated in some selected instruments for the
reconstruction of her story. These instruments were based on Moriña
(2017; 2018) and aimed to raise the maximum knowledge and
information about the participant's life story through different
nuances, as well as to actively involve her in the reconstruction of her
own story. The instruments chosen to outline this study will be
52
detailed below, highlighting that there are others; however, we
restricted the explanation to those we consider appropriate to the
context and objective of the present investigation. They are,
respectively, in this order: A day in the life of…; Self Report; Life line,
and Interview with other informants.
A day in the life of
The first instrument carried out with Beatriz's participation
occurred after the fourth interview and was our last personal contact
before the decree of social isolation consequent to the pandemic. “A
day in the life of…” is a data collection technique in which the
researcher spends a day with the participant to learn more about their
daily lives. It can be carried out in different ways, as there is no exact
definition on how to carry it out, which can be adjusted according to
the context and intentionality of each investigation.
From this perspective, researcher, and participant decide
which version best meets the research objective without disregarding
the availability of the latter. As an example, they may choose to spend
a whole day together and having the researcher follow their entire
routine, from the moment they wake up until the end of their day.
Moriña (2017) states that this technique can adopt other forms, such
as an interview about the participant's routine from waking up until
falling asleep, which would already guarantee information about their
daily life. If the option is to spend the day together, they can record
the events through photographs and filming or simply records of the
observations.
In his study on the difficulties and obstacles that students with
disabilities encounter at university, Moriña (2017) along with the
53
other researchers who assisted in data collection, chose to monitor
only the period in which the student spent at the university, either in
the classroom or in other environments such as the library and
cafeteria, in order to witness the obstacles that emerged, in some cases
it was recorded through photographs in others only with
observations, depending on the consent of each student. The author
emphasises that regardless of the model adopted, the important thing
is that it provides a deepening in the life of the participant so that it
seizes the uniqueness and subjectivity, contemplating and
understanding their life story as a whole through their daily acts.
In the case of this study, we again analysed Beatriz's context
and specificity, as she lives and works in the same environment and
coexists with other people (at the time this instrument was carried
out). Spending a whole day with Beatriz would imply invading the
privacy of the residents of the house such as parents, sisters, niece,
and aunt. In this sense, we considered that it would be more
interesting to accompany the period of her work, since this
environment is also of interest to the research to understand how/if
she faces the stigma.
However, Beatriz raised another issue that would again invade
another's privacy, since she works with massage. Accompanying her
working day would imply accompanying intimate moments of her
patients, who would not feel comfortable with the presence of a third
person. Adapting ourselves to the context of her life, we agreed that
on the day scheduled for “A day in the life of…” the researcher herself
would be Beatriz's patient and could thus get to know how her work
is developed, how she builds the environment to receive her clients,
what the interaction between masseuse and patient is like, for how
long, the contact, the bond between both, what could or could not
54
be an obstacle or difficulty, among other things. To further detail how
the massage occurs with other patients, we conducted interviews
about the work.
So, “A day in Beatriz's life” took place in one afternoon when
I was received as a patient and could experience every detail such as
the welcome, the massage, Beatriz's commands, the way she knows
the other's body without the aid of sight, the music she puts on for
the moment, the way she organizes the space, the concern with the
well-being of those being assisted, how she reacts to the unexpected,
for example, when the massager escapes from her hands or the
ventilator is not directed to the desired location, how she checks the
payment, among several other situations that emerged. By
experiencing a day at work, it was possible to understand how
situations that can be stigmatizing emerge and later these observations
complemented and contextualized the narratives about work and
stigma. We did not consider it necessary to use technological
instruments such as photos or videos; rather, the emphasis was placed
on the lived and remembered experience. In this way, decisions about
when and how “A day in the life of…” would be carried out were
made together with Beatriz, respecting her context and needs.
To illustrate this, in Table V below we highlight a small
section of the record of the instrument “A day in the life of…”:
Table V: Observation log excerpt “A day in the life of Beatrice”
Beatriz opens the gate to receive me, dressed in white, with an overlapped
lab coat and her name embroidered, with tied hair and sunglasses. Her face transmits
seriousness, being quieter than usual, and with few words, she leads me to the place
where she will give me my massage. When I enter the room, she immediately closes
the curtain and locks the door. The white stretcher is prepared just below the window,
55
there is instrumental music in the environment, a fan under a chair and some
instruments such as a massager and creams on the sofa. Beatriz asks me to remove my
blouse, lie on my side and inform her which side I have chosen to lie on. She also asks
for absolute silence so that she may know my body with her hands. At first, she shows
a certain anxiety in front of the researcher, perhaps because she knew that this day
would be described in her Life History. The sunny day makes us feel heat in the closed
environment, and Beatriz realizes that she has not positioned the fan properly. She
apologizes and redirects the fan until she feels the wind on our bodies. During the
massage, a rolling pin (massager) escapes from her hands and falls to the floor. Beatriz
leaves it without showing any concern. As the minutes go by, she loses the initial
anxiety and safely performs each movement, with a soft voice inviting me to move on
the stretcher to contemplate all the points of the body.
During the whole massage process, Beatriz remains silent, and I do the
same, respecting her orientation since it is the first time she is touching me, and she
needs to concentrate to get to know me. Her movements are precise and attentive, she
notices every detail and asks about them, touches points which were, in fact, sensitive
and painful and explains the reasons for the tensions. She tells me about a small
deviation in my spine, notices a herniated disc in my lumbar spine and makes some
recommendations.
The massage, the music chosen, the instruments used lead to a deep
relaxation and relief of the pains resulting from bad posture and tensions. The initial
shyness on my part is soon replaced by a surrender to that moment, resulting from
Beatriz's professio
nalism. Although tired by the process, Beatriz demonstrates
satisfaction with the result and with the feedback, when I answer how I feel after
receiving the massage.
[…] At the end of approximately two hours of massage, I make the payment
and Beatriz decides to give a discount by returning me a note. I ask about how she
knows if she has returned me the correct amount, and smiling, she says by the size of
the note. She steps on the lost utensil (massager) and exclaims, “I found it!”.
Source: Elaborated by the author.
56
Self-report
This is a document in which the participant himself narrates
in the first person about the aspects he considers important for the
composition of his life story and research interest. According to
Moriña (2017) this collection technique can be complementary to
others used, providing relevant information at a time when the
participant has the opportunity to weave a self-reflection about her
life, in the context and time chosen by her and without the presence
of the researcher. In this perspective, the participant may have as
much time as he/she deems necessary for self-reflection and there is
no page limitation for writing. The participant is guided on the topic
of interest, but remains free to carry out his interpretation and
meaning, imprinting his subjectivity and evaluating what he deems
essential and necessary to inform. This document may contain
essential information to know and build their life story.
Beatriz was asked to reflect on the reasons that led her to
choose her profession and the importance of work, with the intention
of understanding the meaning and space of work in her life. However,
once again it was necessary to take into account the specific
characteristics of the participant, as well as any needs she might have,
and we thought together about the best way to write the Self Report.
Typing a text is something that demands a lot from Beatriz, since she
finds it difficult to work on a computer because she does not adapt to
the conditions offered. We considered the possibility of writing the
text on the mobile phone, via WhatsApp, which is the modality in
which she finds it easier, but this was discarded by the participant
herself, who would not have the opportunity to draft, correct or delete
anything if necessary. This was discarded by the participant herself,
57
who would not have the opportunity to draft, correct or delete
anything if necessary. I suggested she should record it on audio and
finally, she decided to face the difficulty with the computer and type
the Self Report, sending it to me by e-mail. Beatriz asked for help to
a blind friend she met at the Association of the Visually Impaired and
who, according to her, dominates the formatting program needed on
her computer to type texts.
From the beginning she was determined to write the Self
Report, claiming it would be interesting, but what worried her was
how she would manage to write and send it (at that stage we were
already in social isolation). It was striking that she did not ask her
seeing relatives for help typing or sending it, preferring a friend in the
same condition, perhaps because the Self Report was something
confiding and intimate, an exercise of looking inside herself, and she
did not feel comfortable in revealing it to her family at that moment,
or perhaps because of the need to prove that she would be able to
overcome the difficulties and complete the task even without the aid
of her sight.
In the end, Beatriz managed to type in the body of the email
and send it. She said she would have liked to write more content, but
had to be succinct due to typing difficulties. Beatriz was proud to
have overcome this obstacle and confident in her learning capacity,
she did not feel underestimated, neither incapable. The Self Report
on the work is presented in Table VI below. It should be noted that
the editing of the text was minimal, keeping the expressions of the
participant and limiting it to punctuations and accents such as
circumflex, crasis, and question marks not located by the participant
at the time of typing.
58
Table VI: “SELF REPORT” excerpt
[…] But, it was in my second and third course, now already blind that I
really found myself, massage therapy makes me enter into an inner peace when I apply
it, I think about how the body is so big and at the same time so small, the points that
are relieved with a touch, but that can also be easily hurt with a wrong massage.
Making my hands travel a path that leads the person receiving the massage to relief
and relaxation. I only really got into massage when I started doing the course again
with no sight left. At the beginning, it was just one more course for me, as I already
had a basic notion of what it was, I decided to do one more, but without the intention
of it becoming my profession, after all, I was already receiving a pension. It was
merely one more course to occupy my mind, to pass the time. I started to do it and I
became interested because I realized that it was much more than what I imagined it
could be, it was more intense than when I did it with my eyes open. Now I had
another world view and I also identified myself with massage therapy. Being able to
help others with therapy, to be of use to someone, even in my current condition, was
decisive for me. It is very sad to realise that people see that you have become just
someone who needs help and never someone who can help.
There are no words that express the feeling of being able to help others, I
don't know if everyone feels the same happiness and values the touch as I do, but I
would like everyone to feel the same pleasure in working in what they like, in loving
their profession, in recognising it also as a gift. I would rather not stop taking new
courses, even knowing that for the handicapped things are more complicated, even so,
we can never stop seeking new knowledge.
Source: text by Beatriz.
Life Line
When Beatriz built her lifeline, we were in the social isolation
phase and, besides the original objective, the use of the instrument at
that moment also had the intention of reducing the distance between
us and keeping her involved with the research. The lifeline is a visual
presentation tool which may combine quantitative and qualitative
59
information by means of an illustration, that is, a graph. Asking the
participant to draw the lifeline is the same as asking him/her to make
a relationship between past and present in a clear and coherent
manner, in chronological order, revealing the importance and
significance of each event in his/her history. It is about visually
simplifying the communication process by replacing extensive texts
with symbols, figures, or keywords (MORIÑA, 2017).
According to Moriña (2017), there are several ways to
perform the lifeline, which can be linear without including any type
of measurement, can include numbers to quantify as more or less,
higher or lower, or even use the valuation of events as negative or
positive. Whatever the option chosen, the author stresses that this is
a technique that complements or confirms a life history in a simplified
manner, although it is used when combined with other instruments,
and a semi-structured interview may be necessary to clarify the facts.
Given the singularities of the participant of this study, we
discussed the best way to outline the line of her life, considering the
lack of vision and difficulties in using the computer. It was
established, according to her needs, that she would write a linear text,
in chronological order, without quantifications such as major, minor,
more, less, positive, negative, that is, without value judgment, but
with keywords and year of the event recording only those significant
in the course of her life. Beatriz sent a text by e-mail with dates and
events which were important to her, and it was clear how quickly she
improved when compared to the first time she had written a Self
Report, which she was very enthusiastic about. We agreed that the
researcher would organize it in an infographic, since it was not feasible
for the participant, however, she would accompany the process of
building the chart with her text.
60
After sending it, we talked by video call about the
arrangement on the timeline, and she remembered two facts that she
had forgotten, but that she would like to have included. When the
lifeline was concluded with the data she had sent and in the order in
which she had constructed it, I described to Beatriz in detail what it
would look like, the type of chart used, and I also read all the content,
obtaining her final approval. As a democratic process of intense
participation and involvement, Beatriz's word was always valued in
the decision-making process during the collection of her narratives,
transcriptions and data treatment, as well as in the presentation,
arrangement, and writing. It is worth mentioning that the titles of the
dates in the lifeline were given by the participant herself and kept by
the researcher. In Table VII below follows the text sent, whose
concluded lifeline the reader will contemplate in the final text of her
life history. There was no need for a semi-structured interview to
elaborate on the events mentioned in her text, since they were
spontaneously commented on during the in-depth interviews.
Table VII: “Life Line” text
2003- Working in the bakery.
2004- Good year, when I started dating.
2005- I started studying English, computing and sugar and alcohol.
2006- I did a massage course.
2007 - I had a serious accident and started a course in food and beverage.
2008- I finished the food course, graduation, what a joy!
2009- Internship in the vineyard I went to the beach.
2010- New job and new plans.
2011- I suffered the assault.
2012- Birth of my niece, a joy in my life.
2012- I found out that I would never see again.
61
2013- I met the Visually Impaired Association (Associação de Deficientes
Visuais - ADVAR).
2014- My abuser got out of jail and went to the mental institution.
2015- I rode my bike alone in the association.
2016- Braille and computer course.
2017- I sold my bike, how sad. I attended a lecture for blind women.
2017- I started a Massage Therapy course.
2017- I did a course in Relaxing Massage and crochet.
2018- My abuser is out of the mental institution, my peace is over!
2018- The aunt who saved my life passed away.
2020- I agreed to participate in the research.
Source: text by Beatriz.
Interview with Other Informants
The last instrument used to construct Beatriz's life history was
the interview with other informants, conducted after the relaxation
of social isolation, however, taking all necessary preventive measures.
According to Moriña (2017), this technique consists of semi-
structured interviews conducted with people considered key in the
trajectory of the protagonist of the life history. This instrument allows
the construction of different voices and points of view that dialogue
and complement the speech of the protagonist, which results in
multiple views of the same reality forming a polyphony of voices
(PUJADAS, 2000; MORIÑA, 2017).
The people interviewed were chosen by Beatriz taking into
account the importance of each one in the reconstruction of her life
history, representing different and essential phases for the
understanding of her trajectory. The semi-structured interviews were
built together with Beatriz who, inclusive, prepared some questions
for each interviewee, which she considered important for the
62
composition of her history. After deciding on the participants and
outlining the questions, Beatriz contacted each of them to extend the
invitation. All accepted immediately and then agreed on the best day
and format with the researcher.
The first to be interviewed was Wagner, Beatriz's teacher in
the Therapeutic Massage and Relaxing Massage courses she took after
losing her sight. For Beatriz, this is an essential person in the
construction of her history. From a dream of teaching the massage
techniques for people with visual impairment and offering the
courses, sometimes with his own financial resources, Wagner made
Beatriz's current profession possible, adapting all the content to her
needs and offering support, clarifying doubts even nowadays when
necessary.
The interview with Wagner was conducted in person at the
researcher's home and lasted two hours and four minutes. As
previously mentioned, the questions were prepared in partnership
with Beatriz and covered issues such as his performance in the course,
difficulties, potential, and achievements.
The second interviewee was Bela, Beatriz's aunt, for whom
she feels much appreciation and gratitude. Beatriz lived with Bela in
the period when she suffered the aggression and the aunt was by her
side in all difficult moments such as surgeries, trips to São Paulo,
recovery, etc. The questions permeated Bela's view of the assault, the
moments after it, the changes in Beatriz and her current identity. The
interview took place at Bela's home and lasted one hour and thirty-
four minutes, during which she became emotional a few times.
Finally, the third interviewee was Ivana, Beatriz's client for
two years, who maintains constancy in the services, therefore, chosen
to talk about Beatriz as a massage therapist. Ivana suffers from
63
fibromyalgia, and this was the reason that made her resort to
massages. The interview lasted eighteen minutes and occurred by
video call, and although in a short period of time, it was accurate and
with relevant information for the reconstruction of the life story.
The three interviews were transcribed, read several times and
the key aspects for the composition of the life story were underlined.
In Table VIII below, as an example, we present the script of one of
them, prepared by the researcher and Beatriz. It should be emphasised
that this is a semi-structured interview, which presupposes that these
were only the initial questions, and that some were answered
spontaneously by the interviewee, while others emerged during the
dialogue. Table VIII below presents one of the interview scripts:
Table VIII: Interview with Wagner
1. How did you meet Beatriz?
2. What was your impression of her at the time you met her?
3. Could you tell me a bit about the experience of running the Massage
Therapy course for people with blindness and low vision?
4. Could you describe the student Beatriz?
5. Did Beatriz have difficulties during the course?
6. If yes, which ones?
7. How did you overcome the difficulties?
8. Did you notice any potentialities in Beatriz?
9. If so, what was the potential?
10. Have you noticed any changes in Beatriz during the course?
11. If so, what changed?
12.
Did you imagine that Massage Therapy would become Beatriz'
profession? Why?
13. How would you describe the professional Beatriz?
14. Do you have any information you would like to add?
Source: elaborated by the author together with Beatriz
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65
5.
Narrative Analysis
The choice of how the data of a research will be analysed must
correspond to the ideals of each proposed method so that it does not
fail to contemplate the intentionality of the study, invalidating the
entire methodological path taken and making it impossible to
interpret and signify what was collected. From this perspective, the
narrative analysis starts from the principle of giving voice and
remaining faithful to the perceptions of the very person who narrates
life experiences, which corresponds perfectly to the Life History
method adopted.
This type of analysis is performed at the same time that the
data is being collected concurrently and is favoured when there is a
single participant, as in the case of this study, since it is analysed
together with the protagonist without the intentionality of creating
categories or comparing his story to that of others. The greatest
existing concern is to keep as faithful as possible to the life of the
narrator reconstructing their trajectory, which involves organising the
elements collected so that it becomes a coherent story, clear,
permeated with sense and meanings that express authentically the
individuality of a life, without manipulating the voice of the one who
narrates (MORIÑA, 2017).
In short, the narrative analysis seeks to contemplate the story
as a whole, without any fragmentation, thus the importance of
collecting and analysing the data simultaneously avoiding that the
66
researcher is faced with a large amount of accumulated information
and whose details and meanings have been lost over time. The data
when analysed together with the narrator, as already explained in
previous topics, allows the information to be organised following a
temporal logic, which provides meaning to the reader.
Moriña (2017) explains that people tell the stories of their
lives, and the researchers have the role of converting these accounts
with the most appropriate methodological treatment to the life
history method. According to the author, in narrative analysis the
story should be approached considering its uniqueness and the
narrative constitutes the central point of the analysis. In this sense,
the author lists some steps that are essential to the analysis path, such
as reading all the information collected, then organising this
information in a chronological order from the past to the present and
identifying the key moments narrated by the participant.
Finally, it emphasises the importance of maintaining
neutrality at the time of analysis in relation to the narrated story. The
researcher is not there to judge, question or prioritise their
interpretation of the story itself, but to faithfully give visibility and
voice to the narrator. In this way, the moments in which participant
and researcher negotiate and together analyse the writing of the text
are of great relevance. At the appropriate moment, the researcher will
place themself, presenting their subjectivity and interpretation,
making it explicit to the reader that at this stage it is the researcher
who is speaking.
Moriña explains that he has labelled as the omnicomprehensive
model the analysis in which the researcher performs different readings
for each life history considering them unique, singular, which results
in a direction of five looks to the story told, which ensure respect,
67
trustworthiness, and sensitivity to their particularities, and they are
holistic; focused; thematic; chronological and subjective (2017, p.
82) to which we adopted and listed below:
Holistic Look
The holistic look refers to contemplating the story as a whole,
focusing on the individuality and specificities of the person narrating
their life. Looking at the whole is possible when the interview
recordings are listened to, transcribed and read several times. The
process of narrative analysis began already in the transcriptions of the
interviews which, in turn, constitutes a decisive moment for the
researcher to deepen, get involved and interpret the narrator's
account. The transcription was always done the day after the
interview so that details such as silence, pause, tears, laughter,
uncertainty, hesitation, or others were still present in the memory,
since these details may go unnoticed when relying solely on the audio
resource. These peculiarities of Beatriz's narrative were explained in
the transcriptions in brackets. We used capital letters to designate the
altered voice and exclamation marks to identify indignation or
surprise.
The transcription process is dense, time-consuming and
requires total availability, concentration, as well as physical and
emotional stamina. The interviews lasted from two to three hours,
which required thirteen to eighteen hours of transcription, totalling
around thirty to forty pages of text in each interview. As agreed with
the participant, during transcription there was editing going by the
orthographic standards of the written language, which implies
correcting only mistakes of Portuguese, verbal conjugation, plural,
68
among others. The intentionality in editing the text was not to
propagate stigmas about the participant when it could fail to hear his
voice by staying stuck to the spelling rules, barring the fluidity of
reading and silencing. The expressions that characterized Beatriz's
style were kept, as well as the meaning. Beatriz was aware of all the
edits and reviewed all the texts to assess whether they corresponded,
in fact, to her way of expressing herself.
In this perspective, immediately after the interview the report
was transcribed, edited, and the main aspects listed in a new text that
during the next meeting was read to Beatriz so that she could approve,
correct, alter or add something. The texts were always read at the
beginning of the interview to remind her of the central points of the
last conversation and sent by e-mail to the participant, who listened
to them slowly and analysed them without the emotion of the
moment and the presence of the researcher. During this period, the
researcher carried out several readings of the transcribed text, a
process that already provided an analysis of what was being raised, as
well as the paths followed, what could be deepened, the themes that
emerged, what had not been contemplated and consequently, where
we would start in the next meeting, that is, a holistic look.
Focused Look
After looking at the whole, it is important to have a focused
look, that is, to perceive the details of the reports and this is possible
through the data obtained in each instrument used. The instruments
previously described in this study were systematically recorded on file,
read several times so that the details that emerged and that perhaps
would not emerge otherwise, could be apprehended.
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The details observed and recorded by the researcher in “A day
in the life of…” brought to light elements that might not have been
said by the participant such as, for example, her serious and
concentrated posture, the need for silence so that she knows her body
with her hands, her concern for her patient's wellbeing, how she
reacts to unforeseen events such as the massager falling, the ventilator
that was not positioned in the desired direction, strategy to check the
payment. Although these details may seem small and could be
ignored even by Beatriz who deals with them on a daily basis, they
may be significant to understand the work environment,
complications and overcoming strategies, or the way she presents
herself.
In the same way, the “Self Report” brought relevant
information which subsequently led to conversations through
triggering phrases. The Self Report made it possible to look at a detail
contained in a sentence written by Beatriz in which she highlighted
the stigma related to disability and which may even guide the
professional choice when she refers to the preference for some
disabilities considered milder to the detriment of others. The
guidance was for her to write about her work and the importance it
has in her life, and beyond that, the participant raised the issue of
stigma.
A look focused on Beatriz's Life Line highlighted themes that
were considered important to her and clearly revealed how she
identifies her life by a before and after disability. Beatriz raises on the
line details of a busy life within the daily normality of who works,
studies, plans and after, how she relearned to celebrate conquests that
previously would seem small, such as riding a bicycle. Some issues
highlighted in her lifeline had not been raised in the narratives,
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however, emerged in the text built in this instrument and would
compose the next dialogues in open interviews.
Although the details that emerge from the instruments may
seem small, they reveal what makes this story unique and their daily
life authentic, rich in experiences, feelings, reactions, confrontation,
acceptance of society, of stigma, of their own limitations and
disability.
Thematic Look
So far, we have already had a holistic look where we observed
the whole through numerous readings of the transcripts, and also a
focused look where we observed and recorded details provided by the
instruments. This is the phase of the analysis in which we adopt a
thematic look, which implies exploring each transcribed account
without a preconceived system of categories. Rather, the themes
emerged from the narrative of the participant herself, from what she
considered important to be said, from her perceptions about what was
necessary to narrate (MORIÑA, 2017). Thus, the information was
organised based on the different themes that Beatriz raised and
interpreted as significant for the interview.
It is necessary to clarify that the researcher went into the field
with a clear understanding of the main theme of the study, namely,
the stigma experienced by the person with disabilities, how/if they
recognise it and how/if they face it. However, the researcher's topic
of interest is not cast upon the participant as if she could or should
provide a ready and finished answer. Rather, the participant speaks
freely about the themes of their interest and choice, to which they
judge important and significant and based on the information kindly
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granted, the researcher was able to contemplate traces, indications,
and evidence of what she sought to investigate. In this phase, the
subjectivity of the researcher comes into play, in addition to that
placed by the participant, when she interprets as stigma the situations
narrated under other themes raised autonomously by Beatriz. When
looking at something said on the perception of the other, it is possible
to contemplate a new angle, but this will be detailed further on.
Given the above, we adopted some steps to organize all the
information under a thematic look. The first of these was again the
reading of the whole. The transcribed text was read at length with
maximum attention to identify each theme raised by the participant
in her narrative. In a further reading, the themes already clear to the
researcher were noted down, totalling 13: Identity; Family;
Friendships; Relationships; Training; Work; Plans; Fears; Faith;
Assault; Aggression; Aggressor; Disability; Society. It is noteworthy
that the thirteen themes explained were raised through the first four
interviews until the moment of social isolation, i.e., they were built
until personal contact was interrupted. After five months of
interruption of face-to-face interviews, we returned and conducted
two more interviews, and the theme Stigma emerged.
The third step followed the annotations of the themes that
emerged through the new reading, and consisted in separating each
theme from its original text by placing it in a table with a title. In this
way, all the statements related to Beatriz's personality, likes, aptitudes
and personal characteristics were grouped together in a table entitled
“Identity”. Following this, all the things said about her parents,
sisters, aunts, and others with kinship covering relationships,
affinities, misunderstandings, and feelings were grouped together in
the table entitled “Family”. In the same way, the narratives about
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friends from the time when she could see, as well as those she met
after losing sight, were placed in the table entitled “Friendships”.
Following on, the love relationships experienced before and after the
assault suffered were grouped in the table “Relationships”. Everything
that refers to school life and professional courses are in the
“Education” table. In the “Work” table, we grouped the statements
on the functions performed before the disability and the interaction
that took place, the choice of the new profession in the second phase
of her life and her experiences. From this perspective, the information
on the plans she had up to the moment she was assaulted and the
plans she has made up to the present moment have been placed in the
table “Plans”. The narratives about what causes her fear were
systematized in the table “Fears”, as well as reports about spirituality
that served as a basis to compose the table “Faith”.
The most difficult reports about the day she was assaulted, as
well as the days of the first year after the assault, were selected for the
table “The Assault”. It is emphasised here that the choice for grouping
the day of the assault with those that followed it and not separately in
a specific table for the moments after the assault, justified by the fact
that they are intensely interlinked for Beatriz, as if the days after,
extension of the day of the assault, were one and the same day, one
and the same nightmare, a succession of pains and slow and painful
discoveries for her. The day of the assault and the first year after, are
for Beatriz like a single day and only after the first year did she
deconstruct the old identity and accept the new one that presented
itself. This was perceived during the interview, listening to the audio
and careful reading of the transcription in which Beatriz talks about
the first year with the same pain, intensity and vehemence, not
distinguishing the temporal separation, not differentiating the time
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elapsed. An intense effort was necessary on the part of the researcher
to understand what happened on the day she was assaulted (surgeries,
circumstances, other people's demeanour) and what happened
months later. Even having clarified, in respect to Beatriz's perception,
it is that the decision of a single picture, a single pain was made:
It was a year in which I had a lot on my mind. The first year
for me, I had all that hope of seeing again, I stayed one year
wanting to see. My friends would come and show me some
picture and say “I'll save it for you to see later”, pictures,
reports… so I lived with that expectation, without knowing
how it would be (Beatriz).
Immediately afterwards the separations were made about who
is the man who assaulted her, the kinship and friendship he had and
the experiences and supposed motives, and also her current situation
in a table called “The Aggressor”.
The table “Disability” includes narratives about the
specificities of blindness, difficulties, limitations, discoveries, new
ways of being and being in the world. At that moment, there was the
separation of what referred to her identity as who she is, what she
likes and does (already grouped in the table “Identity”) from what
was related to disability itself and its consequences. Although they
seem similar and inseparable in the participant's own narrative, we
understand them as distinct accounts, i.e., beyond the disability, we
previously looked at the person. Finally, we separated the narratives
on how she is seen, labelled and judged by people outside her family
contact, on accessibility barriers and others, allocating them in the
table “Society”.
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Once again we emphasise that these were the themes that
emerged from Beatriz, in the period before the social isolation, during
the four interviews carried out and in each of them it was possible to
contemplate the presence of stigma, even if not said explicitly. Finally,
the new interviews carried out during the relaxation of social isolation
also went through the same treatment as the initial ones and the table
“Stigma” was added, in which Beatriz discussed situations
experienced in which she felt stigmatised for her condition as a person
with disability.
After the third step, which required a longer look, we
proceeded to the fourth step, which consisted of reading each table
considering whether the selected texts corresponded to the entitled
themes. At this stage, it was possible to realise that the same excerpt
could correspond to more than one theme, requiring a decision on
which would be prioritised or in other cases, in fact, would remain in
more than one frame, as in the example:
In my perspective, Paola cannot understand that I cannot see
anymore, that I am handicapped nowadays. She does not want
to accept, she thinks I am… I am the 'me' from before. But I
am not that person from before, today I have limitations
(BEATRIZ).
The excerpt above was placed in the “Identity” table for
reflecting on who is the person of today and who was the previous
person. It was also grouped in the table “Family” because it deals with
the conflicting relationship with the sister. The same excerpt was
grouped in the table “Disability” when it specifically narrates
consequent limitations.
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Up until that moment, the data reflected absolute chaos, and
it seemed to make no sense to fragment the texts in this way.
However, following the fifth step, which was a new reading of all the
tables with a look at the whole and no longer at small fragmented
excerpts, it was possible to contemplate the meaning and the new text
that was being established, reinvigorating the spirit to continue. In
this way, it was possible to understand the importance of valuing the
gaze for the whole, even when experiencing chaos.
It is noteworthy that in this phase we were living a historical
moment of a world pandemic and social relations interrupted when
everyone was kept in isolation for safety, however, Beatriz's
participation in the data analysis was necessary, and we did it through
conversations on video calls and recorded audio. Beatriz was aware of
what the thematic look was about, the themes she raised, and the
information contained in each of them, agreeing with the
arrangement and organisation, recognising them as legitimate.
The feeling of absolute chaos experienced by the researcher
was also experienced by Beatriz in the beginning, before the look at
the whole, who showed interest in understanding each theme and still
surprised with the amount of information she built. The process that
at first seemed difficult for her, stating that she would be unable to
build it if she were alone, in the end, was seen as rewarding and
interesting.
In this phase, Beatriz raised several questions of doubts that
arose, among them, how her lines were placed in such a way that they
could remain faithful even to her pauses, laughter, hesitations, and
expressions. The question was clarified with the explanation that at
the time of transcription, always immediate to the interviews, these
particularities present in oral language were still present in the
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memory which made possible the registers by means of brackets such
as (laughter); (… hesitation); (silence). In fact, this question was an
important feedback for the researcher when the participant
recognised herself in the transcriptions and texts of the themes.
Beatriz also explained which passages she would not like to be
published in the thesis, which were selected with strong colours to
highlight them. She also made it clear which table she would rather
not have published in the thesis in order to preserve her identity and
intimate life, a wish that was also respected, which leads to the
disregarding of the theme “Relationships” in the writing of her life
history, that is, although this table will remain in the data analysis file
and all subsequent conversations on the theme will continue to be
grouped in it, this information will not be published.
She questioned what the researcher would show in
presentations of the thesis at events and boards of examiners. At this
point, the topic of stigma arose, which although mentioned in the
reading of the informed consent form, was forgotten by the
participant. The researcher explained how a presentation is made,
going through an introduction of the investigated theme, the
objective and method, the life story and the final considerations about
the whole. Beatriz wanted to know about the meaning of stigma
which was explained to her and showed interest in reflecting on
situations in which she was stigmatized, already narrated to the
researcher, but without being aware of what they actually meant in
society.
This issue triggered curiosity about other ways of doing
research, asking if it is possible in a single interview to obtain as much
information as we have constructed. The researcher described that
this is the main characteristic of the method we carry out, that is, the
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depth and closeness that cannot be built in quick interviews or in a
single day. As feedback, she narrated about the empathy she felt since
the first interview, claiming that the trust, identification, and
proximity were crucial for her to speak comfortably and in a free,
detailed and spontaneous way about her life, which did not occur in
other interviews that she has already granted to broadcasters that
sought her due to the great repercussion and commotion that the
aggression suffered caused.
In view of the above, a synthesis of Beatriz's participation at
the time of the thematic analysis is valid:
Table IX: Participation in the analysis.
Thematic look: She initially considered it a dense and difficult process, but then
understood it and found it interesting.
Presentation of the thesis: She asks about what will be said in presentations of
the thesis at events and boards. She takes an interest and raises questions.
Stigma:
She asks about what stigma is, becomes interested, understands and
reflects on situations she has previously described to the researcher in which she
was stigmatised, but without knowing what it meant.
Particularities of the method: She asks about the method and is intrigued to
learn about how information is gathered in other types of collection, she is
fascinated by the specificities of the life history method.
Feedback: She recounts her experience with the interviews, the closeness, and
trust she felt with the researcher, about other interviews granted in which she
did not fully open up about her life, how comfortable and secure she feels to tell
details of her life and participate in the study.
Themes: She listens attentively to the reading about each theme and excerpts
that represent it, talks to the researcher about them, agrees with the organization
and is satisfied with the look on the whole. Beatriz asks how the researcher
managed to portray her exp
ressions and moments in which she smiled or
emphasised some explanation. She made remarks about passages and pictures
that she would not like to expose in the thesis.
Source: Elaborated by the author.
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The online conversations about the research during the
pandemic and the social distance made it possible for us to remain
close, preserving the bond we had built and also maintained Beatriz's
growing interest in the research, in the impact it would have on
society, in the reflections it would raise on disability and stigma.
Being informed and participating in the analysis process was very
relevant for her to fully experience the meaning of a method in which
the roles are shared. Beatriz even mastered the terms used in academic
language, acquiring knowledge about the method in which she
participates and reading articles on the theme of disability and work.
In the Life History method, the researcher puts herself in the
place of the participant, and the participant in the place of the
researcher, deconstructing hierarchies, building knowledge, empathy,
that is, the ability to see the world through the other's view. The
researcher learns from the participant about stigma in practice, about
coping, about experiences different from her own. The participant
learns from the researcher about stigma in theory, about method,
analysis, and about signifying her own experiences from another
perspective. Both learn about the importance of each one in the
construction of a life history.
Chronological Look
After the thematic look in which all information, without
exceptions, was grouped in tables with the corresponding themes
forming new texts, the next step was to organize this information in
a temporal sequence. It is known that in oral language, even if there
is intentionality, narratives do not follow a rigid logic of chronological
order, i.e., while narrating the present, there are mentions to the past
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or future, which does not produce a discourse in evolutionary
sequence.
There was a concern to respect the temporal style of the
participant herself, who narrates her history explicitly marked in three
times: life before the assault; life in the first year in which she suffered
the assault and life after the first year of the assault until today.
Following the same line, in the phase of the chronological look, we
built three new tables to (re) group the information already separated
by themes. The first table was entitled “First Stage: the Normalcy”
and in it were grouped all the thematic information that happened
when Beatriz was living life within what we know as normality. We
continued respecting the thematic order, which implies keeping the
titles with their respective texts, however, within a new time frame.
In the same way it happened with the second picture entitled
“Second Stage: the Assault” in which we kept the information with
the corresponding titles (family, faith, fears, assault, etc.), but in a
new picture corresponding to the time in which they occurred, (the
day of the assault to the first year after) for the reasons explained in
the previous topic in which the addition of the day of the assault to
the first year after is justified. In the sequence, all the themes raised
during the third stage of Beatriz's life were grouped in the table
entitled “Third Stage: the Disability” which refers to the facts that
occurred since the days that passed after the first year of the aggression
when she was discovered as a person with disability until the moment
of the construction of her life history.
Organising the narratives that were already thematically
separated was a process that, although not as exhaustive as the
thematic look, demanded attention and time, since it was easy to get
lost in the data when transferring and reorganising them. As a
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strategy, in each excerpt selected the theme and time to which they
referred were repeated out loud, for example “Family Theme, Third
Time”. It was necessary to create strategies like this, to maintain
concentration and activate the memory when, after the tenth page,
the process to find the place where the text would be inserted took a
long time, which consequently could result in a mistake as to the time
or forgetting the theme. It was still possible to refine small passages
that, at this stage, seemed to clearly belong to another theme, but that
had gone unnoticed before.
Similarly to the phase of the thematic look, a new chaos
seemed to impose itself with the narratives, as well as new
fragmentations in a single paragraph or sentence to obey the
chronological logic seemed to make no sense or have a reason.
However, in the end, through a new look at the overall picture, it was
possible to see how this organization provided more focus on what
really needed to be contemplated in the life story, making it easier to
reconstruct it. Several pieces of information that were “inserted” in
the same sentence or paragraph when separated in chronological
tables could be easily excluded, when unnecessary for the composition
of the story, considering the limited number of pages (although there
is no strict or explicit rule, the desirable is that the story occupies
approximately forty pages), a fact that allowed a focused look and a
clear and continuous text without deviating from the interest and
objective of the study.
Finally, in a last reading of the chronological tables, a new
organisation was carried out within each stage, that is, the
information that was only grouped within the three stages without
the concern in leaving them in the order of events (but only if they
occurred in the first, second, or third stage), was in this phase
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organised in detail in a faithful sequence from childhood to the
present day. Finally, aspects considered fundamental and key passages
for the composition and presentation of the life history in the final
text presented to the readers were highlighted from the text together
with Beatriz.
Subjective Look
According to Moriña (2017), subjectivity is understood from
a dual perspective that involves the protagonist of the life story, i.e.,
the one who narrates his life and also the researcher. To imprint and
value the subjectivity of the participant, it is necessary to offer the
necessary conditions for them to participate in the entire process,
from when they agree to narrate their story to the organisation and
analysis of data. Beatriz saw herself reflected in the story constructed,
made sure that the researcher was faithful to her words and
experiences, as well as her pain and emotions, had the last word in
decision-making, reviewed each text about her story, as well as each
theme that emerged deciding which would be contemplated,
approved, completed and analysed everything that was being built.
She took possession of the knowledge about stigma, and re-signified
her own experiences, and at the end of this whole process she
guaranteed and recognised her subjectivity in the study.
On the other hand, for Moriña (2017) it is inevitable not to
also print the subjectivity of the researcher, since it is them who carry
out the transcriptions and edits that subsequently organised
constitute the life story for the reader, who triggers by means of a
sentence the dialogue that follows, listens, dialogues and interprets
what is being said to them and beyond, their subjective look is placed
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when they manifest their interpretation of the story in the analysis
that until then remained within themself.
It is necessary to point out that through the five looks
described, Beatriz's voice was present in a remarkable way, it was
respected and valued, and the researcher had the role of being as
neutral as possible so that the participant's protagonism would stand
out. However, at the end of the process there is a conclusion, and this,
from another perspective, presupposes a re-reading and interpretation
from the perspective and perceptions of those who heard and lived
through the whole process, in other words, the conclusions from the
researcher's perspective, which will be explicit in the title that, at this
moment, she is the one speaking. At the end of numerous readings
from the time of the interviews, preparation of summaries for reading
with the participant, transcriptions and narrative analysis through the
five looks, the researcher found herself deeply involved with the data,
to the point of knowing them in every comma, exclamation, laughter,
tears, or silence.
From this perspective, the next chapter shows the life history,
narrated in the first person in which Beatriz's voice stands out
through a neutral text, i.e. the participant's narrative will not be
interrupted with the researchers' comments, before, the text will be
continuous as well as the interviews. The intentionality at that time
when the neutrality of the researchers was maintained as it occurred
during the interviews through a listening that Augras (2009) calls
respectful, was that Beatriz's voice could be heard without
interference from other voices, whether dominant, political, academic
or even from the researchers themselves.
In the chapter “The Life History” the reader finds Beatriz's
voice narrating the remarkable moments in her history that have
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made her the person she is today. Beatriz explains, in the first person,
her perceptions about everything that happened to her, about
disability, society, and stigma. She also talks about attitudes,
confrontation, and feelings. The reader will be able to identify the
tools explained here in the construction of the history, which help in
the final composition of the story. In some moments, there will
appear voices of family and friends who will talk about Beatriz herself,
but they are understood as complementary and not as protagonists,
which are highlighted by indentation and smaller font size so that the
reader may immediately differentiate them. The “life line”, “Self
report” and the dialogue that emerged from the instrument “A Day
in the Life Of…” will also be marked in brackets for identification.
The presentation of Beatriz's life history in this paper will not
be intended as a discussion on disability, but as an exclusively didactic
purpose on possibilities on the path of building life histories.
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6.
Beatriz' Life History
Normalcy
My name is Beatriz, I am 37 years old, a massage therapist
and married to Elis. Until I was twenty-eight, I lived a normal life,
like any person my age. My childhood was peaceful, my mother
worked as a maid and my father in a sugar and alcohol producing
mill. I am the eldest daughter and I have two sisters, Paola, the middle
daughter and Juliana, ten years younger. I was always a quiet, docile
child, I did not quarrel with anyone, I never did anything naughty
and when I got beaten it was because my sister Paola did something
wrong. I had responsibilities from an early age. When Juliana was
born, I washed and ironed her clothes while my mother was in
hospital. When my mother went back to work, I was the one taking
care of the baby, which made me sad sometimes because I wanted to
be able to play like her middle sister.
One thing I find strange was my preference for a game I
invented. I used to pretend to be blind! I remember clearly that with
the handle of the squeegee I walked from my mother's room, with
my eyes closed, tapping it as I walked to guide myself, I passed
through my room, the kitchen, the living room, guiding myself with
the invented cane, groping and imagining what it was like to be blind.
I did not have contact with any blind person, but I used to play this
game and imagine how it would be to be in this condition. When
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Juliana was born, my mother took us to a 'benzedeira' who was blind.
She had two white eyes and I thought she could see. I remember that
we sat close to her and I would not go near her, I was afraid, I would
watch her face and doubt that she was really blind. I would look at
her white eyes and think, “this woman can see me”. I think people
think this about me too, that maybe I can see them.
One day, when I arrived at this woman's house, I noticed
that she was cutting up chicken and cooking. Then I was sure that
the woman could see. Everything frightened me about that woman,
her expressions, her mannerisms, her white eyes and even her hands
with the marks of time, thin and dry skin. This was my only contact
with a blind person, although I was already playing and imagining
that I was blind long before I met this lady.
I can't explain why, this is something I don't understand, but
I simply grabbed a stick, turned it into my cane and walked around
the house with my eyes closed, imagining that I was blind, feeling
blind. God knows all the things in our lives, He knows everything we
are going to go through, and maybe He was preparing me. Why
would a child play like that? I hadn't lived with a person in such a
situation, I wouldn't have had any reason to want to play like that.
My place
In my teenage years I became even more coy and shy, I didn't
talk to anyone, I kept to myself. I felt very ashamed, I was always very
quiet at school, I always hung out with the same people in class
breaks, sitting around, talking to a few of my closest friends. I only
went out to go to church, sometimes I had an ice cream, but by ten
o'clock at night I had to be home. My teen years were not one of
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dating. I was quite easygoing and felt embarrassed about everything.
I was always the one that didn't say much.
I was a diligent student as a teenager, I was part of groups that
contributed to the school, and I dreamed of becoming a psychologist.
I remember I had a book with the title “Psychology”, it didn't even
have a cover, it talked about the mind and that interested me, it
caught my attention. I liked to read and write in diaries, but I was
always very introspective. My family would invite my sister for walks,
but they wouldn't call me because I didn't like to talk, to chat, and
so they wouldn't bring me along.
When I was about to turn eighteen, I went to live with my
aunts, who had their house in the same yard. There were three single
uncles who lived in the house next door. My uncle passed away, and
I started sleeping there, keeping my aunts company. I started going
to my parents' house only at night, as a guest. I was always with my
aunts in an environment that was the opposite of my parents' house.
It was a calm, tranquil environment, a real refuge. Because I was so
young, living with older people, that changed me a lot and changed
me positively.
Beatriz was a girl who listened to us a lot, she was very
obedient and listened to me and to Carina, my sister, who
passed away. Carina always taught her to put away her clothes
properly, to take off her shoes and put them away, so she grew
up being organised. You can notice that in her house
everything is well-organised, considering the current situation.
If it were someone else, they would leave everything
disorganised, but not her, she does everything well. She
learned everything here from us. So, we got a lot of love from
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living so close together! Then she grew up, studied, went to
work (Bela, Beatriz's aunt).
With my elderly aunts, among other things, I learned
empathy. For instance, from them, I learned to respect others in the
smallest things, like how to be careful not to make noise when
arriving home when they were already asleep. When I was living with
them, I went out a lot because I was young, but I always took my
shoes off right at the door, entered carefully, went to the bathroom
with the light off because they were asleep. I took this care, as did
many others, but at my parents' and sisters' house it was the opposite
of what it was at my aunts' house. There was noise, impatience from
everyone, nervous people, swearing, so I didn't adapt to that
anymore.
I changed and perfected myself in my aunts' home, which
became my own home and in which I even got a room where I kept
all the things most precious to me, like my collection of soaps, my
guitar called Ariel, the diaries with my notes, my moon-shaped bear
hanging from the lamp, the stars placed on the ceiling.
At that time in my life, it was just the three of us, my two
aunts and me. My parents and sisters were next door and if when I
visited them and for some reason witnessed some argument, I would
simply leave for my aunts' house, I would no longer stay where I did
not fit in because now I had somewhere to go back to, I had found
my place, my peace, the refuge I had sought for so much in my
childhood, my silence, however, even that was abruptly snatched
away from me…
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A new phase in my life
I became increasingly more communicative and more social
when I started to work in a bakery, where I stayed for seven years and
interacted with a variety of people. I started as a clerk and in a short
time I was showing signs of my development, I was already becoming
more communicative, I was talking to the owner, work colleagues and
customers.
Despite my shyness, I loved to work, I interacted well with
everyone and I had a special affection for the elderly who used to shop
in the bakery. I felt sorry for them because they didn't have someone
to help them and I worried about how they would get back home,
what obstacles they would encounter on the way back, I was already
worried about the issue of accessibility.
Even today, there are people who come to me to say that I
always treated them very well and complain about the current service.
As I would always treat customers with kindness, I can't imagine
anyone mistreating them, they are elderly, innocent people, I couldn't
bear to witness any rudeness towards these people. I remember that
the elderly, in their innocence and trust, would buy the products and
put their little money so that I would check and get the correct
amount. Sometimes, when they had difficulties going down the steps
of the bakery, I would leave the counter to help them or even
accompany them to their homes. Today, with my limitations, I see
how many people have helped me and continue to help me, so I think
I am reaping what I planted back then. I did everything out of love,
without interest, but today I receive that love in return.
I was a clerk, cleaner, attendant, pizza maker and baker
without earning anything extra for extra services. I never earned a cent
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more, I never earned to work on holidays, absolutely nothing! The
bosses were always very good to me in other aspects, but I was not
paid for the extra hours, I had no time for personal life, I had no life
outside the work environment. I worked from Monday to Saturday
and even on Sundays. As I was the one making the bread, I had to go
in before the other employees. When the others arrived, I was already
baking the bread. They were exhausting hours, when I left work I
didn't feel like going out with friends because I was so tired, but even
so it was the best time I ever lived, from the age of twenty until I was
twenty-seven, without a doubt it was the best phase, I spent most of
my time there, I ate there, in short… I learned a lot, I grew, I
matured, I suffered, I cried, but I also had joys, I made friends, some
of them true, others not so much, I learned to deal with customers,
with people of all kinds…
As everything in our lives is a cycle, my time at the bakery
ended, I joined a beverage factory, and it was a totally different
environment from what I was used to. I started to get a taste for what
I had never experienced before, like more spare time to take care of
and invest in myself, go out and connect with other people.
Beatriz was very dedicated and hard-working, if you lend her
a penny, even if you forget and don't even want it back, she
makes a point of paying you back, she is a very honest and
punctual girl. Then she started working at the beverage
factory, she'd get up very early in the morning, so I never let
her leave without breakfast, ever! She would have breakfast
and tell me 'Bye, Bela', and I would reply 'Bye, Beatriz! Go
with God, may God be with you' and she would leave on her
little motorbike. (Bela, Beatriz's aunt).
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Many plans and the end of a cycle
During this time I worked in the beverage factory, the desire
to study was awakened in me. I studied to be a masseuse and took a
course in Lymphatic Massage, falling in love with that field. I read
many books and researched the subject which became everything in
my life.
I was totally dependent on my sight and did little exercise on
the other senses. However, the advantage was that with sight I could
search the books as many times as necessary, and it was much easier
to clear up any questions. Today everything is much more difficult in
that sense, but back then I couldn't feel every part of the human body
as much as I do now.
I wanted to continue taking massage courses, I wanted to take
a course where I would learn to walk with my feet on the person's
back, unfortunately this course didn't get enough people signed up
to open a class. But the real reason that made me leave massage was
shyness. I was too embarrassed to touch anyone. As soon as I finished
the course, many people wanted me to give them massages, including
Nívea, a masseuse who was like a mother to me and the person who
most encouraged me to take the course, she was the one who gave me
my first stretcher.
However, I left the idea of working as a masseuse aside and
continued working hard in the factory. I am a person who prioritises
and values work, I have to work, I think about making money. I've
always been like that, and during the time I was in the factory, I also
had another job as a nanny at night. I endured the double shift
because I loved the money I received at the beginning of the month.
For me, the beverage factory was a place that matured me, I learnt to
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value myself in relation to money, education, I learnt to drive, I
planned to go to college. I chose to study for a degree in environment
and I had already filled out the papers, everything was already right
for me to start college. I worked during the day at the factory, at night
as a nanny, and I was dating, with plans for a marital union. It was a
busy life, I didn't have much time, so I opted for distance learning.
I admire everything about Beatriz! I admire everything! Since
she was born, I always admired her, and she was growing up
and becoming an educated girl, diligent in everything she
does, she went to church with us, a confident girl, wise, she
started working early taking care of children and was not a girl
to spend her money on nonsense. Today, I admire her much
more for overcoming so much in face of all that she went
through. But, I always admired her for everything, her good
memory, her dreams, her strength, the fact that she wanted to
go to college, the courses she took to become a masseuse (Bela,
Beatriz's aunt).
Many plans, a busy life and endless possibilities presenting
themselves in front of me. In September 2011, the factory gave me
time off, although I didn't want any, I liked my active life. I protested,
but I thought it might be good to have a little time to rest and visit
friends, as soon my life would become even more busy with college
and marriage. What I didn't know, however, was how much my life
would change forever during that time off and that things would
never be the same again.
I left the beverage factory not knowing that I wouldn't be
back. On the way out I passed a walker who always stopped to talk to
me, we smiled and talked. I stared at his face without knowing that it
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would be the last time I would see him. He wished that God would
accompany me, and I left riding my motorbike with the conviction
that I would soon be back. Today, I can say that God really
accompanied me when I left that factory, protecting what is most
valuable to me… life!
Assault
It was September 2011. Until the day of the assault, I was full
of plans. It's true that I didn't want any time off that month, I told
a co-worker that I would rather have it in October, but nothing could
be done about it. If I hadn't been on leave, the tragedy that marked
the history of my life might have been avoided because I wouldn't
have been at home, I would have been working.
On the day it all happened, I was going to visit a friend who
gave birth to a baby. As I would soon be going back to work and
would not have time to visit her, we agreed that I would go to her
house that day. She replied that she would bake a cake to wait for me.
However, that day I didn't feel like going out. I keep thinking that if
I hadn't been on leave against my will… and if I wasn't preparing to
visit a friend, even against my intuition… and if I didn't take a shower
at that moment… if my aunt didn't have to use the bathroom next
door because I was using ours… I wouldn't have been alone and
vulnerable… if… if…
But before telling what happened, let me tell you who my
aggressor was. I apologise for not being able to pronounce that man's
name, it is too painful and frightening for me, especially because it
was someone from my family, in whom I had total trust, who grew
up with me, with whom, sitting on the back of his bicycle, I rode
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around town without any worry or fear, someone who even lived in
my house, my own cousin!
An ordinary day…
It was a day like any other, everything seemed perfectly
ordinary, except for the intuition that persistently told me not to go
out that afternoon, not to be alone.
I woke up very early, cleaned the whole house, went to the
supermarket and brought home some bread. I went into my social
networks, talked to a friend and told her that I would visit someone
else, even if I didn't want to. This friend advised me not to go, but I
said goodbye and ignored her advice because soon, as I mentioned, I
would go back to work and I wouldn't have another opportunity,
things would be much rushed for me. The three of us were there, my
aunt, my father and me. My father was resting in his house, right next
door, my aunt Carina and I were alone in our house.
As I was getting ready to take a shower, I remembered that
my cousin had said he would visit us that afternoon, he always called
to let me know when he intended to visit us. My cousin suffers from
schizophrenia, we were very good friends, I always treated him with
respect and consideration, I never treated him with indifference or
discrimination as other people used to do. He was always at my house,
we talked, I helped him when he needed something, my feeling for
him was always of friendship, I treated him as if he were a brother.
However, my cousin stopped using the medication for schizophrenia
and this worried me, he sometimes got aggressive with other people,
but never towards me.
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That day I didn't see him around the house before I went into
the shower, I have no recollection of it, but I took my clothes with
me to the bathroom, just in case, I usually left wrapped in my towel
to get dressed in my room. I knew my cousin was there, but I don't
remember seeing him, I can't tell if I spoke to him… I don't have
that memory. I don't remember passing him by the room, or talking,
saying hello, or even catching a glimpse of him. I DON'T
REMEMBER seeing, bumping into, or talking to him. But I do
remember the announcement of his presence that afternoon…
When I came out of the shower, already dressed and with my
hair wrapped in a towel, I saw my aunt Carina opening the little gate
that separated the two houses and going towards my father's house. I
remember seeing her head covered with white hair, walking away
from me. My aunt was going to my parents' house to use the
bathroom, since I was occupying the one in our house. I thought of
calling her, but I just watched her walk away, thinking to myself
“Preta is going to my father's house”…
At that moment, I was alone in the house, at least it seemed
that way, although my aunt and father were close by, just next door.
I didn't see him in my house… maybe, because of the towel that
covered part of my face. I took a step up the stairs that go to the living
room and I just heard a loud noise… it was the first blow I had
received on my head. Startled, I looked back and saw my cousin with
an upset face, with a look of hatred on top of me. I let out only a sigh
of terror and surprise without understanding why he had hit me with
a hammer, I tried to run, but I could only take two steps forward.
He pulled me by the towel wrapped around my hair and
knocked me to the floor. I fell sideways, into my bedroom doorway,
and he sat on my waist, immobilizing me. My body laid on its side
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facing the door with him on top of me, and he started hammering
the side of my face at the height of my ear. I asked him to stop, I
asked him why he was doing that to me.
He would answer “you killed my puppy”, to which I would
defend myself “no, I did not kill your puppy”, I repeated it over and
over again that I had not killed his puppy, by the way, a puppy that
did not even exist, but nothing could stop him. The only thing I
could do was to grab his neck with my hand, but he moved his head
back, and I couldn't reach him anymore. I screamed loudly with all
my strength, “Stop! Help! Preta… Father… help!” My aunt and
father, although so close, did not hear my cries for help. Maybe if I
was in the kitchen they would have been more likely to hear me, but
in the room a little far away, it was difficult. I called out a lot for my
father and aunt, but they could not hear. I screamed and no one
listened.
Totally immobilised, I could only reach the door with my
eyes and the only hope at that moment, the only way out I could
think of was for someone to enter through that door, that was all I
could think of, someone… someone… anyone who could enter and
stop the blows to my face…
I was lying in the living room, and he hit me a lot on the
right side of my face until I couldn't take it anymore and passed out.
When I passed out, he dragged me to the door of my aunt's room.
He continued hitting my face with the hammer, he took out my eye,
nose, all the skin, broke my jaw, broke my face in half. My aunt
arrived at that moment. She was slow to return because she was old,
her steps were slow and any activity, however simple, was more
difficult and time-consuming for her. However, even with short, slow
steps and numerous difficulties in getting around, her steps and voice
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were strong enough to stop the aggressor. For me, aunt Carina, whom
I affectionately called “Preta” was a saving angel, to whom I owe my
life.
When my aunt arrived and saw him crouching down, she
imagined that he was attacking the dog. She came in a little further
and spotted my legs and shouted at him, who immediately got up.
She came closer and tried to turn me over, I was already choking on
my own blood. My aunt didn't have the strength to turn me over, so
she went back, slowly because she had no agility, and called my father.
My father was faced with the aggressor standing in the
doorway, his clothes soiled with blood. Not knowing what exactly
had happened, my father just exclaimed, “Just leave. Otherwise, I will
kill you!” He opened the gate and left. When my father entered the
house, he found my face completely open. Until that moment, my
father had thought that he had hit me, but he could not imagine the
gravity of the situation, he could not imagine that he had done all
that. My father said that the scene he witnessed was simply horrifying.
Amidst the blood splattered all over the room, walls, curtains, carpet,
he identified my nose bone on the floor and kept it in his pocket, my
face was split in half and without the skin that covered it. My father
managed to turn me around and stayed with me while my aunt went
to call an ambulance. I could hear him talking, upset, “Oh my God,
he killed my daughter!” The way they saw me… my father thought I
was dead.
My brother then… such a cruelty… he went to the hospital
with a little piece of a bone from Beatriz's face kept in his
pocket, he didn't know where that piece of bone came from.
At the hospital he would hold that little piece of bone and
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cry… he would say in tears to a friend who was a nurse
working at the hospital “look at my daughter's bone here in
my hand” (Bela, Beatriz's aunt).
My struggle for life did not end with the arrival of the
ambulance. When I arrived at the hospital, I was lying on a stretcher,
with a sheet over my face because nobody had the courage to attend
to me. I was losing all my blood because no doctor wanted to help
me. The doctors lifted the sheet that covered me, looked at my
condition and covered me again. The nurses could not even look at
me, nobody wanted to attend to me because my face was destroyed.
Doctor Ruy was not working that day, he had only gone there
to discharge a patient. When he arrived and came across my case, he
decided that he would operate on me, even though he was not
working. He and a nurse who always accompanied him took my
trolley and went up to the surgical floor. When they got there, the
nurses on that floor barred the door and said that I would not be
allowed in, that I was not a responsibility of that hospital. The doctor
pushed the trolley against the door that opened and said, She will be
operated right here, get her some blood immediately!”.
There wasn't a single bone left untouched in her face. Beatriz
lost one eye and has haemorrhaging from the other. (Deputy
who took charge of the case, excerpt from an interview with
the local news).
My heart rate was already reaching zero, I was losing a lot of
blood and I needed to replace it urgently. The first surgery lasted
approximately sixteen hours. It was many hours of surgery, with only
this one doctor who took responsibility and his auxiliary nurse. The
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others didn't do anything. They didn't help in any way. Dr. Ruy was
an angel in my life, just like my aunt who, if she hadn't interrupted
the assault… a few more minutes and I wouldn't have survived. I had
this surgery and four days later I woke up from the coma, I did not
remember what had happened, I did not know what I was doing
there, I did not even imagine that I could not see anymore, I did not
have the dimension that my life had changed forever!
Why me? Thank God it was me!
Beatriz presents the following picture, according to the
communications office of Health: Facial mutilation, sinking
of the frontal bone, nasoethmoidal fracture, partial tearing of
the nose with total loss of the proper bones of the nose and
annexes, fracture of the palatine process of the maxilla, bone
loss of the upper jaws, fracture of the orbit in bilateral Blow-
out, laceration and loss of substance of the frontal region,
laceration of the upper eyelids, laceration of the upper lip and
severe ocular trauma. At the moment she is stable, conscious,
calm, tracheostomised, on spontaneous ventilation (Excerpt
taken from local newspaper report).
It is so weird, I think it is God because I was not terrified. I
had so many people in my hospital room, so many visitors and I still
smiled at them all, consoled them with gestures, signalled that I was
fine! People joked with me and as I could not speak because I had a
tracheotomy, I took their hands, I wanted to show them that I was
all right, I had no idea of the seriousness of what had happened to
me.
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I received visitors at all times, even in an ICU, I cannot
explain how those people managed, but they entered my room all the
time to visit me. They were people who worked in the hospital and
wanted to talk to me, friends, relatives, and others I didn't even know,
curious, since my story had great repercussion. They came and
introduced themselves and I treated them well, I had no notion of
what had happened to me, I did not remember, I could not reason, I
do not know how to explain those confusing days.
The nurses brushed my teeth and when I ran my tongue over
them, I felt something strange… I worried, I planned to go to the
dentist as soon as I got out of that hospital. That was my biggest worry
at that moment, I thought there was something wrong with my teeth,
when in fact, my whole jaw was collapsed. My entire face was stitched
up from the inside. My nose was lying on the stretcher when Doctor
Ruy simply picked it up and placed it on my face. The only eyebrow
that I have today is actually hair that was implanted, everything was
torn off, I didn't even have any facial skin. He took what was left over
from the top of my forehead, stretched it and sewed it underneath.
But I was worried about going to the dentist without the ability to
measure the size of the changes to my disfigured face.
I didn't touch my face, I always kept my hands down for fear
of touching myself. I was always very prickly, my head was covered
with stitches because my whole face was reconstructed. I was taking
stitches from my head, poking but not touching my face. One day, I
plucked up the courage and, with great sacrifice, I touched my
eyebrow area, very delicately, my fear was not that it would hurt, my
fear was that I would know how I was. When I touched the left side
of my face, I asked dumbfounded, “where is my eyebrow?” My aunt
answered: “Beatriz, you don't have any eyebrows on that side”. I
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continued: “But it's going to grow, isn't it?” No, no more eyebrows
will grow there, you'll only have one”. At that moment, my world fell
apart. I cried so much because of that eyebrow until I found out that
I wouldn't even have an eye, then the eyebrow became of less
importance.
One day, when she could get up from her hospital bed, I took
her for a bath. As we walked to the bathroom, she asked, “Bela,
will I go blind?” Gee, when she asked me that question, you
have no idea…(voice cracking)… what could I possibly say to
her? (crying) I said, “You probably will!” I couldn't hide it,
could I? I said, “Oh Beatriz, you will probably go blind” and
she started to cry. She started to cry and so did I. I took her to
bed, the bed was full of tears. I took her to bed, both of us
without talking, just crying (Bela, Beatriz's aunt).
Gradually I remembered what had happened and became
aware of why I had been in hospital for so long. It took me several
days to remember everything that happened and tell my family. Four
days after the coma I woke up, but I still did not remember, I went
to São Paulo, I had another surgery, the only things I wrote to my
family were for them to take care of my aunt, only this, I still did not
remember what really happened.
I only started to remember when I had my tracheotomy
removed. I don't remember the exact date when I remembered
everything, but I remember that I was already talking, with a lot of
shortness of breath and difficulty. I had already been through
surgeries, it was probably more than a month before that. I started to
tell my aunt fragments of what happened, little by little, when they
would come up in my memories or nightmares. I remembered the
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look of hatred in my cousin's eyes as he assaulted me. It was an evil
look. A look of fury. He would stick out his tongue and clench it
between his teeth as he hit me in order to put more force into the
blows he dealt. The last thing I remember before I blacked out and
lost my sight was that look of hate…
I have never done anything to him! That day I had not done
anything to him, nor any other day, I have never done anything to
him. We did not argue, we did not quarrel, I always treated him with
great care and respect, I have never done anything! When I woke up
from the coma, I did not know why he had hit me and I only
remember thanking God that it was not my aunt who was already old
and would not resist. I thought “it's a good thing it was with me”,
that's the way I thought.
My cousin was arrested red-handed and at the police station
confessed that he liked me beyond kinship and that since he was
unrequited… The lawyer claimed that he had an episode because he
was not taking his medication. However, I do not believe this because
he premeditated it, he planned it days before, on the way to my house
he went to a building materials shop and bought the hammer to hit
me, he waited for the right moment when he would find me alone in
the house, he hid so that I would not see him, he waited for the chance
to hit me from behind without being seen. For me and for the
prosecutor of the case, it was not an episode!
It was very difficult to have to remember what he had done…
I slept through the night holding the hands of my aunts who could
not sleep, they spent the night sitting on a chair beside me while I
shook their hands. Every time I woke up scared, I had nightmares, in
fact, even today when I am very anxious, I dream terrible things
related to him. Remembering what happened and reconstructing the
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scene for my family, for the police and for myself was very difficult,
but these were not the only moments of difficulty and suffering. The
physical pain, the numerous surgeries and procedures afflicted my
body, while the memories afflicted my soul. It was in the moments of
intense physical pain that the outrage against what had happened to
me arose.
It was a very long process, but of all the things I've been
through on my face, the removal of skin from my wrist was the most
painful, I suffered a lot. They opened the area of my wrist, about three
fingers of skin and sewed it up leaving an open wound, like folding a
sheet leaving the mattress exposed. In about a fortnight, my skin
would regenerate, and a new one would grow to cover the exposed
area. The doctors would then remove this newborn skin and
reimplant it in the site where my eye was. The donor area hurt very,
very much. The pain that I felt in the donor area, according to the
nurses who did the dressing, was similar to the pain of a burn, so
much so that I stayed in the burn ward. I listened to those people
screaming in pain.
I stayed at the house of a cousin who lives in São Paulo, since
I would spend a long time doing the treatment there. I went with my
aunt to the Unidade Básica de Saúde UBS (Basic Health Unit) and
the nurses made the dressings around the eye that had been removed
and in the wrist region from where the skin needed for my face was
removed. Not all the nurses could uncover my face, one time, one of
them got sick when she saw my face, she had to leave and ask another
nurse to do the dressing.
The daughter of the cousin who hosted me is in the health
field and started to dress me personally. The pain was intense and
those were the moments when I most resented it, I asked myself why
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he had done this to me. The rage emerged at the time of the physical
pain. Then I stopped questioning myself and just thanked for being
alive, the anger was because of the intense pain, that day especially, a
pain that I do not wish for anyone! Because of so much pain, I decided
to stop the surgeries. The doctors wanted to continue, even to put a
prosthesis removing a little bone from the hip to re-implant in my
nose because currently it does not have the bone and cartilage,
nothing. I can't breathe through it, I can't smell, I lost my sense of
smell too.
They made a layer with a cavity trying to give a depth to the
shape of the eye, but it was not possible to make an eyeball.
I decided that I would not undergo any more surgery if it was
only for aesthetics. I continued with the procedures that would allow
me a better quality of life, such as treatment with an occupational
therapist. The doctor said my hand would not return to normal, but
I tried very hard and it came back. My hand is numb, but I can do
my everyday tasks and work with massage.
My face has lost expressions due to lack of skin, if I try to
make any expression of angry or a grimace, I can't even if I try very
hard. The stretched skin retracts and I can't make the expression, no
matter how much strength I put into it. Sometimes I'm serious, but
people think I'm smiling. In certain situations, because I have
stretched my skin to the extreme, I can't make facial expressions like
serious, angry or sad.
As I matured and became more discerning, I made choices
about which surgeries and treatments were worth the sacrifice of pain
and effort and which were not. So, the assault was something sudden,
out of the blue, quick, but the post assault period was very long, I
went through a lot. The most impactful thing for me was not being
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able to see myself and not being able to see a person. However, I still
kept a great hope in relation to the eye that was not torn out … the
hope of seeing once again…
And that was the day Beatriz died...
Returning to my parents' home was very difficult. My aunts'
house was my world and my desire was to go back there after such a
long and painful period in hospitals, relatives' homes, surgeries.
Perhaps because I thought that going back there would be the same
as going back to what I was before, and that wouldn't be possible
anymore. However, that house was what I knew as a place of warmth,
tenderness, respect, and it was no longer possible to enter that
environment without being tormented by memories and fears.
That was a year in which I had a lot on my mind. The first
year after the assault, I was hoping to see again. I spent a year hoping,
believing that I would see through the eye that was not torn out. My
friends visited me, showed me photos, reports and said, I'll save it for
you to see later” and these words fed my hopes, I lived with that
expectation, the certainty that I could recover at least a part of what I
had, of what I was. Despite the hope and belief that I would see the
world again, it was also a year of anxiety and uncertainty, not
knowing how my life would be if the worst happened and I could not
see again.
However, for the most part, my expectations were positive,
after all, I had lost one eye but still had the other. The pupil went
down from the centre. I imagined that they would lift the eyelid and
with this, I would see again.
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The months went by and with them went my anxiety,
expectations, and plans for when the nightmare and the darkness
would end. When exactly one year had passed, I went for an
ultrasound of the eye. I sat in front of the doctor with joy and hope
and was surprised by a cold, direct and incomprehensible question:
“Do you know Laramara?”. I said yes, and the doctor continued, “And
have you done any mobility courses?”
I had already heard about Laramara, which is the Brazilian
Association of Assistance to the Visually Impaired, when I received a
visit from members of the blind association of my city.
Recommended by the doctor who operated on me, they came to give
me support, guidance, indications of courses that would facilitate my
new life and asked if I knew Braille, to which I promptly replied that
there would be no need, since I would soon be able to see again.
Anyway, the doctor told me that it would be good for me to
take some courses at Laramara, which made me feel weird and
uncomfortable, I didn't understand why I had to take such courses
since I would see again. He gave me the result of the ultrasound and
referred me to another doctor who was much plainer and more
precise.
The other doctor explained that there was nothing he could
do for my eye, neither in Brazil nor abroad, there was no one who
could do anything for me to get my sight back. He also said that he
would advise me, with the same advice he would give to his daughter,
that if someone wanted to mess with my eye, for me not to allow it.
That maybe in four or five years' time it might be that with the
advances in medicine, something could be done, but that at that time
there was not. Eight years have passed and there still hasn't been any
advance that could change this situation.
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My aunt Bela and I were present at the moment of the news.
I came out of that office in a panic. I sat on my aunt's lap and a hole
opened up under my feet. A woman bumped into me and I felt like
hitting her and taking it out on someone else, I felt like bashing the
world, shouting, swearing, demanding justice, turning back time,
everything!
But then my aunt Bela started to cry with me, a painful cry of
someone who seemed strong up to that moment, but who would not
resist any more. I couldn't bear to hear her in that state and I had to
be a little stronger, for both of us… I stopped crying, I became quiet,
I stopped crying on the outside, but I kept crying on the inside. I
couldn't bear to listen to my aunt's painful weeping. I remember that
on the way home she was crying and sobbing, and I consoled her and
asked her to stay calm, but in reality I felt like screaming. I silenced
my crying, I stifled my pain, I cried only on the inside. Of course,
when I got home, I lied on my pillow, alone with myself, it was a
different situation, so I could cry without being seen or heard.
It was not easy to come home, face my family, my mother,
Aunt Carina, and say that I would not see again. I WILL NOT SEE
AGAIN! This part was very difficult because how could I see all my
dreams crumble? From then on, I had no more dreams. No more!
They were simply over. What would I do with my life? I wasn't
Beatriz any more, Beatriz was over. Deep down, the Beatriz that I
knew I was, independent, dreamy, active, died right there… at that
moment, even though I didn't die, she was gone with my blindness.
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Hi, it's still me… Beatriz…
The psychologists said it's two years of mourning, just like
when someone dies, and they were, indeed, two very difficult years to
get back on my feet, rebuild and reinvent myself again. I was used to
seeing the world, and my mentality was that of a seeing person. It is
completely different to someone who was born blind, it is another
situation. Little by little, I was trying to learn to look at the world in
a new way.
At the beginning, I received many visits from friends,
relatives, and even strangers who wanted to know how I was. People
cried profusely and I, embarrassed and even frightened in many
occasions, only consoled them, asking them to be calm, that
everything would be alright. In reality, I myself did not yet know how
things would work out for me…
One day, right at the start, when I returned from São Paulo
to spend a few days at home, I was in the living room talking to a
visitor, and they called me to go to the kitchen. When I got there,
there were people everywhere, friends who came to congratulate me
on my birthday, they sang Happy Birthday, it was a surprise party!
That day I got to know everyone, one by one, through touch. I missed
one or two people, but most of them I recognised by touching their
faces. As the loss of sight was something recent, I still had their faces
in my memory. They were all there and at that moment those people
were very important to me.
Time went by and everything changed a lot, soon the visits
became more and more scarce, the curious people already started to
forget about my case, the relatives went on with their daily lives of
work and hurry, the work colleagues lost contact, the friends no
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longer had anything in common. My life alone was frozen in time.
Only a few friends remained by my side, the true ones and those who
remain until today, besides my parents, sisters, and aunts. I suffered
a lot with the loss of friendships because I had many friends, from the
bakery, from the neighbourhood, from work, from my school days,
in short, they all disappeared after what happened to me. I didn't
expect that it would be like this, that I would become invisible, that
I would be forgotten even though I was still alive.
Alessandra was one of those people who disappointed me so
much, whom I believed to be a true friendship, but who could not
resist adversity. We were very close, she was always at my house, I
used to stay with her son on my Sundays off because he loved being
with me. One day, I was at the supermarket with Elis passing by at
the check-out and Alessandra and her family eating at a table beside
her. They finished their meal and left the table at the same time we
left the checkout. We walked behind them. She looked back, I still
didn't know they were close, I passed them and when I got to the car,
Elis said, “Beatriz, we passed a friend of yours”. I asked who it was and
from the description I knew it was Alessandra. Elis said she and her
husband were there, and they looked at each other after staring at my
face and pretended not to know me.
That gave me an inexplicable feeling, of anxiety, of anger. The
next day, I sent her a message: “Alessandra, was that you in the
supermarket yesterday?”. She replied, “Yes, Beatriz!”. I continued,
“But, why didn't you say hello to me?”. She answered, “I was with my
husband and so you know how it goes…”. No, I didn't, and I still don't
know “how it goes…”.
She apologised, and I said it was OK, however, inside I felt
awful about that situation. It was over. I should have asked the
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question “If I could see, would you greet me?” These are situations
that sadden me because they were people who lived with me intensely.
Today I don't talk to her anymore, I excluded her from my social
networks. I don't hold grudges, the days go by and I calm down. But
it was her birthday and I sent her a message on WhatsApp wishing her
well and congratulating her. She never replied. So, I deleted it because
it was doing me harm, and the friendship ended, we lost contact. I
don't see anything anymore, and I leave her there in her corner, that's
what she chose, and I don't know why.
On another occasion, Antonia, who lives here at the back of
my house and grew up with me, did something similar. We were
sitting at a gas station, I was with my sister Juliana and I felt that there
was a person next to me. Antonia was talking to Juliana, telling her
news about her life. At a certain moment of the conversation, Juliana
told me who was the person next to me. I was stunned: “Antonia?”
She answered: “Yes Beatriz, it's me, Antonia”. She was next to me, and
she hadn't addressed me, as if it was difficult to talk to me and say
who it was. In these situations, I get really angry because she was next
to me, I was there. How long we had known each other? It's as if I
was nothing to people.
Beatriz feels that there are people who discriminate against her
because she can no longer see. She says that there are people
she knows who the person is, she recognizes them by their
voice, but they don't greet her. Even people from her own
family, who have seen her passing by and have not even called
her. She can't see, so if the person knows that she can't see and
sees her passing by, they could interact with her by saying,
“hello Beatriz, I'm here, how are you?”. She feels this, she feels
this a lot, and she notices it, I've even noticed it myself. She
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gets very sad, she says 'Oh, just because the person cannot see,
the person has a disability, do they have to be isolated? It is
not like that…' She does feel it. Even we are saddened,
sometimes we forgive them because we want to believe that
the person really did not see her, did not notice her, so we give
them a break. The hard thing is that she knows the voice,
right? She knows who it is, on this aspect she resents a lot, yes
(BELA, Beatriz's aunt).
And since then, I go through situations like these almost daily,
whenever I go to the supermarket, restaurant, shops, walking down
the street. I count on the support of my family and a few friends, and
that's it. I try to stick to what makes me stronger and what makes me
feel alive, useful in some way, such as the birth of my niece. Caroline's
birth happened at a very important moment in my life when I was in
the process of acceptance and rediscovery. Caroline was born a year
after the assault, and since then, she has helped me to have more
strength. At first, when I gave that baby a bath or did anything for
her, I saw myself as a capable person again, I could understand that I
was still me and despite the disability, I still had something of myself,
I felt that I could help someone.
I felt the same way when I was doing something for my aunt
Carina, who had fallen ill. Aunt Carina was already old when I was
assaulted. Before the assault, she cleaned the house, washed the
clothes, did everything, but what happened to me was so traumatic
for her that she gradually withered away until the day she died. She
was afraid, she was traumatised as much as I was because she saw me
like that. I couldn't go into the room where it happened, so she would
sit in the living room and I would stay in the area outside. She would
tell me, “Turn on the light, Beatriz”. I didn't need a light, but she
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would insist “Turn on the light, Beatriz” and I would turn it on
because of her, she didn't want me to stay in the darkness outside the
house. In the last days of her life, it was me who gave her a bath, put
on her clothes, helped her with everything I could. In those moments,
there was nobody doing anything for me, invalid, limited, blind, but
it was me who was doing something for someone I loved, someone
else needed me and not the other way around. This way, I was able
to learn and discover all that I was still capable of!
It was a process in which I needed someone to give me
strength, there was always someone reaching out or taking my hand
so that I would not give up. God put people in my life when I needed
them most and with unexpected words that strengthened me again
and kept me going.
Disability
I have tried to see my face several times. I ask God to show it
to me in my dreams, but at the same time I am afraid… I have seen
myself with only one white eye and the other normal. In my dreams
I have managed to almost look at myself in the mirror, but just as my
face was about to appear I would run away, catching only a glimpse
of it. When I touch it with my hands, inside, it's not possible to
imagine how it is because I don't have that image stored in my
memory.
If I had seen a face without an eye before going blind, maybe
my mind would bring back some image of what I am today, but since
I haven't, it's hard to imagine. Even though I don't visualise the
figure of a face like mine, I know the impact it makes on other people
when they verbalise expressions of fright or pity. On one occasion,
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the small son of a friend cried in despair and terror at seeing me
without glasses, calling me a monster. It is in those embarrassing
moments that I can imagine how disfigured it is…
Some people have told me that they would have died if
something similar happened to them. When you put yourself in the
place of a person, it's not the same as living the situation. You can try
and feel it, try and imagine it, but each person will have their own
way of experiencing it. The pain that I feel on my face today may be
nothing for you, or it may be much worse than it is for me. For each
human being it will be different, even if they go through the same
situation, it doesn't mean that they will feel the same. But I am
absolutely sure that the same way God gave me strength, he would
give it to other people as well. Before telling the challenges of a life
with disability, I made a summary of the facts that for me have been
remarkable in my life history…
(Line of (“Life Line”) instrument)
2003 - Working in the bakery
2004 - Good year, I started dating.
2005 - I started taking an English course, computing, and sugar and alcohol.
2006 - I did a course in Massage.
2007 - I had a serious motorbike accident.
2008 - I finished the Foodstuffs course, graduation, what a joy!
2009 - Internship in Vinagreira. I went to the beach.
2010 - New job, new plans.
2011 - I was assaulted.
2012 - Birth of my niece, a joy in my life. I found out that I would never see
again.
2013 - I met the Association for the Visually Impaired.
2014 - The aggressor got out of jail and went to a mental institution.
2015 - I cycled alone in the institution.
2016 - I took a braille and computer course.
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2017 - I sold my bike, how sad. I attended a lecture for blind women. I started
a course in Massage Therapy. I did a course in Relaxing Massage and Crochet.
2018 - The aggressor is out of the mental institution, my peace is over. The aunt
who saved my life has passed away.
2020 - I agreed to participate in this research.
The world is not for us...
When society looks at me with pity, considers me incapable,
and I realise that the person's words are of great pity, I always try to
deny it, to change this “poor thing” view about me by saying how
well I am. What helped me in the process of accepting the disability
was firstly God, I would not have achieved anything without my
faith, it was my foundation. Then family, a few friends, psychologists,
psychiatrists, a set of things that helped me to get this far because the
mind is the most difficult part to cure. Some things have changed in
my view, others continue the same, although people no longer seem
to recognise me.
I think Beatriz first of all overcame the problem of lack of sight
within herself. I think it is a matter of acceptance, I think she
accepted 'I am like this, and I will have to adapt to live' and
this was primordial for her life. She never complained or
complained, I never saw this woman say, 'Oh, I'm blind, woe
is me', I never heard her say things like that. She never cried,
she never complained! Personally, I don't know if I would
behave like that if I were her. She had a very good acceptance,
her psychology was worked on. I always tell her that this is a
slap in the face for many people because there are people who
find obstacles in everything, to work, to leave home and with
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Beatriz, the obstacle does not prevent her from living (Ivana,
Beatriz's client).
Interestingly, I am more vain today than before I went blind.
When my nails and hair are not done, I ask Juliana to help me, to
take me to the salon because I depend on others to do it for me.
Before, I used to go to the salon and do my hair… ME! Now I don't,
I depend on Juliana or someone else who can take me. I learned to be
more vain than I was before, that is because the blind, the
handicapped are much more seen than a normal person. If a person
without a disability enters a market, they take what they want and go
unnoticed. The disabled person does not. When a person with a
disability enters, people look and follow them with their gaze, they
stop what they are doing to observe them. Sometimes my sisters say
For God's sake, get dressed, if someone comes in here they will think we
don't take care of you”, so I go, change clothes, get dressed, more to
please others than for myself, knowing that I am the target of
observations and comments. For me, what really matters is the
content of what I'm going to talk to the person and not how they
look.
In my daily life, I even forget that I am blind. However, there
are situations in which blindness startles me and I get angry, I
question myself, I rebel, normally situations provoked by others. We
were at the country house for the weekend, I wanted to get something
from the house, my sister Paola was there to guide me. There was a
climb, and I was tapping with my walking stick to find my way. She
said, “Be careful! You will hit the others!”. I answered, “Paola, how can
I hit someone when I know that this is just a climb, there is nothing
and there is no reason for anyone to stand here?” A man who was
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passing by and heard it said laughing, light-heartedly, “You should
really hit them, they should get out of the way!”.
Statements like this one from Paola show me that people
don't put themselves in the shoes of the disabled, as if it was only my
duty to adapt to others. I get aggravated when someone is giving me
directions and suddenly picks up my cane and abruptly takes it in
another direction. My hand follows the sudden movement, throwing
me off. “Oh, Beatriz, there are people there!”. This upsets me inside,
and I think to myself “Gee, it's as if the world is blind, and I'm the
only seer at this moment, it's me who has to dodge people!!!”. I get so
irritable that I feel like throwing the cane away.
If I am trying to orient myself, the cane at that moment
becomes my eyes and I cannot use it if they constantly take it from
me or change its direction. The first thing people do is pull out my
cane, they take it from me without any warning. Then I hand it
straight away to the person who took it and when they say “Here's
your cane, I reply “No! You want to use it!”. It makes me angry. I got
so angry once that I let go of the cane by dropping it on the floor
inside the market. Elis tells me she does this to avoid me bumping
into something and breaking it. On those occasions, I cut her some
slack and in places full of things I take extra care because I know I can
break something. On those occasions, I hold the shoulder of the
person accompanying me rather than use the cane. It has happened
that I knock over certain things in the market.
In fact, I got very angry with Elis for something like that. We
went to a shop, and I was looking at cups. I found a cup that looked
beautiful. I finished looking at it and went to put it back and ended
up knocking it over on the shelf. Although it didn't fall to the floor
or break, Elis got overly upset, treating me like I was a child and
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needed to be scolded. My face must have been red from
embarrassment, from being flustered, from the way she spoke to me.
I felt like I was nothing, a child, as if I couldn't handle myself, even
though this incident could have happened to anyone.
She replied that I would break it and would have to pay, so I
should stop messing with it. I remembered a friend from the
association who broke all the jars of candy that were for sale on a stool
in the middle of a pavement, and I became even more nervous. The
difference was that I hadn't broken anything and anyone could have
knocked the cup off balance, but the issue was visibly because I am
disabled. I felt really bad because of Elis' attitude, the only reason I
didn't cry at that moment was because I held myself together,
breathed and kept quiet.
If I could still see, it would be another situation because I
would simply turn my back and leave her talking to herself when she
hurt me. But my disability prevents me from doing things, from
reacting as I would like to and this irritates me, the disability prevents
me from being myself. I have always been like this, if there was an
argument involving me, I would just turn my back and leave, I never
stayed in this kind of situation, today I have to stay and this makes
me very nervous. I want to resolve my things and I can't leave without
needing others, and this makes me anxious, aggravated.
When you become disabled it is always the other person who
does it for you, I am dependent on the other person, if I want to go
somewhere they have to take me. It seems that when you become
disabled you no longer have your own life, it seems that you are no
longer your own person, you no longer have your own opinion. You
end up doing things you don't even want to do, you lose the voice to
say what you want, whether you want to do that or not. For example,
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as if I said to you (Researcher), “I'm sorry, but I don't want to do this
interview” and you answered me “No Beatriz, do it, you have to do it!”.
“But, Ana Paula, I don't want to.” “Do it anyway!”. My opinion
doesn't count anymore. I'm blind, but it's as if I also don't speak
besides not seeing, as if I don't have any more reasoning, voice and
choice, so I became nothing to people.
Each person has a personality and their inner self follows, but
it seems that after you go blind, irritability and restlessness become
greater. The fact that you can't do certain things makes you more
nervous. In these moments, people say “disabled people are so
irritable”, the wheelchair user or the deaf person, but it's because we
can't do what we want to do that we become more vulnerable. The
world is not for us. People can't see us and can't hear us, the streets
and pavements are not accessible, the whole shape of that world is for
the sighted. We are considered inadequate, incapable, burdensome
and at the same time we are seen in a template where everyone has to
have the same abilities. I mean that if a person with blindness is able
to do a certain thing, I have to be able too, as if we are all the same!
How come you can't do it?”. I carry a burden for being disabled, I have
to prove that I am capable of doing that. It is not enough to be blind,
you have to do it. You have to be capable and yet, you are labelled as
poor thing and incapable.
But, I have to understand that I can't do it anymore.
Occasionally, I plan, if I have to go to the dentist, for instance, I plan
to call the Uber here and ask them to drop me there, I think about
doing this, but I've never done it because the fear immediately comes
along with the planning. I think I would be able to go alone just to
my hairdresser's, which is very close, it's a block away, and I would
be able to make it by myself. Still, of course, my aunt would be
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watching me from the sidelines. When I go out even here on the
pavement, just to turn around and enter my aunt's house, I know she
is watching me, I feel her presence. Once, she assured me that she
would let me go alone, that she would give me a vote of confidence
and not keep watching me. However, when I went to cross the street,
she shouted, “Watch out for the tree!”.
I understand that on certain occasions it may be that I restrict
myself, there is also this side, many blind people restrict themselves,
they think that they won't be able to accomplish certain things, and
they end up not being able to! It is as I mentioned before, each person
has their own gift, your gift is certainly different from mine, they are
different situations, but nothing stops the blind from trying and
seeing if it is for them. Try and see if they like it or not, and that's
fine, but don't even try because they believe they won't be able to
because of blindness… To try or not to try involves a lot of fear, fear
of frustration, fear of what people will say about you, fear of another
defeat, there are many issues involved. I no longer have one hundred
per cent of any of my senses. My hand movements have been
impaired, my sense of smell has been lost, my sense of taste has been
compromised, my hearing too, so all my senses have been
compromised apart from the loss of my sight. Still, I work and try
with what I have.
I'm no longer the Beatriz I was before…
Today's Beatriz is… a warrior! (laughs). I'm joking, people
often call me a warrior, but I just consider myself determined. I find
that today I am much more determined in some situations than I used
to be. Today, I say I'm going to do something and I won't give up
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until I get it done! Although I have always been persistent about
things, now I am more determined, I can achieve what I want and go
all the way, I try and do it, even if in the middle of the way I throw a
fit or get angry, throw the cane to the ground (laughs) even if I do
these things I will achieve my goal. Today, I am also more sensitive,
sometimes more rude, I am not delicate at all depending on the
situation.
The situations that commonly make me irritable, sensitive
and unkind are those in which my own family forgets my condition
as a person with blindness. In my point of view, Paola, for example,
cannot understand that I can no longer see, that I have a disability.
She does not want to accept it, she thinks I am the same as before.
But, I am no longer the same person I was before, today I have a
limitation.
I know that nobody is fit to deal with the disabled. Nobody!
If a disabled person arrives and stays in your home, you will also be a
bit overwhelmed, this is normal. But time goes by, and you have to
adapt to the disabled person, getting to know their needs. They don't
see me as a blind person. They don't see me, they see me as the Beatriz
of before. Sometimes I even want them to see me like that,
unconsciously I try to be the Beatriz of before. That Beatriz who
could go out without requiring help from anybody or having to ask
for things in so many situations, but no matter how much I wish and
try, I can't be the same person or perform the same way.
At my parents' house, they have not yet adapted to the blind
person; on the contrary, I am the one who has to adapt and overcome
all the obstacles they impose on me. They move things around and
don't tell me. Paola keeps changing everything, and I only find out
when I bump my face or legs on something. I have to take a deep
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breath in order not to argue. But, many times I bump into something,
I get hurt, I get angry, nervous. Paola has the habit of changing the
position of the bed in the room. When Caroline would fall asleep,
and I would carry her to bed, I would often put her lying on the
opposite side of the bed to the headboard because of the changes in
the furniture arrangement without any warning. A little while ago I
went to take Caroline to her room, and when I arrived with her in
my arms and went to put her on the bed, I felt Paola's feet on the
place that would have been Caroline's, and I said "But have you
changed the position of the beds again? I ask her to let me know when
she moves things, but she doesn't.
They used to leave the motorbike in the middle of the yard,
right in the passage to my aunt's house, I used to fall and step on the
motorbike. They leave the shoes on the doorstep and I have to pick
them up every time so that I don't trip and fall. Every day I have to
do the same thing, pick up the shoes, find out where the furniture is
in the room, but I have nothing to do but adapt to this.
If I clean the house, of course it's not the same as cleaning for
someone who can see, but I do my best, I try. How many times Paola
has come and redone everything I had done, and that upsets me and
discourages me. I make so much effort to do things, it is difficult for
me to do everything I did before, and she complains that it is badly
done. It is more difficult to live with Paola, it may be that for her, it
is very difficult to deal with my disability and the tragedy that
happened to me, it may be that I bother her with my limitations and
fears, I do not know what goes on inside her head. Maybe it is her
way of not wanting to face reality and accept that her sister is now …
a person with disabilities.
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It is very difficult because we want to change the perception
of others, but it's no good. My mother always repeats the phrase, “I
did not have a blind daughter!”. Very often my mother is giving me
directions, and she stops abruptly in front of me and I just bump into
her or trip over her. She shouts angrily,Ouch!”. It bothers me
because it feels like I'm wrong. I think my mobility teacher should
give my family a lesson, the first step should have been to instruct the
family.
I wish I could obstruct their eyes so that they can see what it's
like. It's not the same anymore, it's very different, these are situations
that sometimes I can't change because deep down I think they
Sometimes, I think they understand the reality that I don't see, but
most of the time I realise that they don't believe it or they don't accept
it. Today, I was sweeping the yard and I noticed that there was
someone at the door, I asked who it was, and my sister replied snidely
“It's me, Paola, Beatriz! Who else could it be?”. I replied, “How would
I know who it is? I can't see”. Then I kept thinking about it… could
it be that they don't understand?
I even plan to one day enter the room at a time when she is
sleeping, in the dark, touch her feet, and then she will ask me who
she is, and I will answer in the same harsh way so that she feels what
it is like for me so that she understands that now I live in the dark, so
when I ask who she is, it is as if I am seeing with my eyes. On another
occasion, me, my niece Caroline and Juliana spun around, we held
hands, they had their eyes closed and after a lot of spinning I proposed
that we find the door to the room. I felt great because I found the
door quickly. All I have to do is identify any part of the place where
I am, and I find my way around quickly because I already know the
place. Now she, being a sighted person, doesn't know how to work
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with the part of hearing that we have to use to orientate ourselves.
These occasions, when I can feel superior and not at a disadvantage,
bring me much satisfaction.
It is difficult for people to understand the needs of this new
Beatrice, and they almost always interpret it as me being annoying.
Yesterday, Elis and I had a fight because I was trying to tell her
something important about a family matter, and she was listening to
music while I was trying to talk. Elis likes lots of noise, loud music
and I also like music, but when I am talking I don't like it because it
gets in the way of my attention, since I only have my hearing, which
is also impaired.
We started talking, and I asked her to turn down the sound,
she turned it down a little, but not enough. I said that when it was
quiet, I would tell her. To annoy me, she started to sing the song even
louder, so I refused to talk, I wouldn't talk as long as the noise was
getting in my way. When you were reading the summary of our
previous meeting I remembered this situation… if I suddenly
exclaimed “Blimey, I'm blind, I only have my hearing, the noise is
getting in my way” I would be called ignorant, she would call it a
cheap shot!
Sometimes I really go for the cheap shots, but when I do, it is
because I am already at my limit, in certain situations I have to be
emphatic and play dirty. In that situation with Elis I wanted to avoid
being rude, I didn't want to speak this way, but I could so that she
would understand that it bothers me. Sometimes, at my mother-in-
law's house, I always turn the sound down because if she comes to
talk to me from behind, for example, I don't understand, and I get
even more annoyed.
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The other day at my mother-in-law's house, the television was
so loud that I couldn't wash my hands or go back to the living room,
it seemed that I was in a place where I had never been before because
the noise was so loud in my head. I sat down on the sofa and said to
her, “Wow, I seem to be blind today!”. My sister-in-law has a problem
with me because she thinks I can see. They say that I follow them
with my eyes when they move, and this makes them suspect that I
can see. They keep walking, and I follow them with my eyes because
my hearing guides me. When I told them that I was feeling blind,
they even laughed because deep down they believe it. I explained,
“not that I can see anything, but today I can see less!” (laughs) They
answered, “Oh, is that so, Beatriz?” My mother-in-law came home on
Sunday night, and I was sitting in the living room listening to an
audiobook when she came in and exclaimed, “What are you doing in
the dark?” That's one of the things I hear the most: “What am I doing
in the dark?” I don't answer, I just smile. At one point, my father has
asked me, “Why are you making food in the dark?” I get an indignant
look on my face. If I kept all the lights on, people might even suspect
that I'm not blind, but I don't need lights.
Many times, if everyone leaves the house, and I am here alone,
I turn everything off, I don't want the sound anymore so that I can
pay attention to what is happening outside, at the gate… I can pay
more attention. Paola wants to hear the sound too loud, and I ask her
to turn it down. She says, “For God's sake, you're a pain in the neck!
Why don't you go inside?”. I go into my room, close the door and listen,
but, depending on how loud it is, I can't do anything! My mobile is
digital, and I depend on hearing to type or receive something. It's like
the sound blocks my vision and I can't do anything else. These are
the things that happen in everyday life, and they make me think, they
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don't put themselves in my place, they forget that I really don't see.
Just this morning, I was putting the stretcher in the room and I hit
my mother's leg. She asked me: “Beatriz, can't you see that you are
hitting my leg?”. I said, “Mum, I really can't see!!”.
In certain situations, I think people do forget. Because I pay
attention to the voice and look in the direction of the person
speaking, they may forget that I can't see. There are blind people who
are quiet, look away while you speak and don't articulate with their
head, so the fact that I do that makes people forget that I can't see.
However, when your family forgets that, it's more complicated
because I think, “Well, if they forget, who's going to remember? If they
can't put themselves in my place, who will?”. It's in those moments that
the future worries me.
An uncertain future
The other day, I was talking to my niece Caroline, who told
me that she had a dream of meeting a television presenter and some
characters from the children's soap opera she watches. Caroline asked
me what my dream was. I stopped, thought about it, and answered
that I had no dreams. She insisted, nonconformist, asking me if I
didn't dream of anything. I spent the whole day thinking about this,
about which dream I would have. Even though I reflected so much,
I could not think of any dream. I would like to do a bamboo course
(massage), but I think this is a goal and does not have the strength of
a dream, as I had before with the motorbike or with college, today I
have no more dreams…
Not that, for me, it is sad to stop dreaming as it may seem to
other people. It is not sad, not having dreams may not be something
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negative. In the old days I had the dream of being a psychologist, I
had it, but it didn't work out and that was OK. Today, when I
manage to achieve something I want, something that seemed difficult
for me, this already makes me happy. It makes me have happy
moments, and that's enough for me.
Dreams have given way to real concerns in my life. I think a
lot about my future, about old age, I think a lot about what it will be
like if I am alone. I don't know if I'll still be with Elis, if I'll have
someone to look after me, or if I'll be in a home. I am not afraid of
the future, I just worry about it. I think that because today I live with
constant uncertainty, in the future I might be afraid of being alone,
living without a mother, father, or sisters. Because one day everything
ends, nothing is forever. It may be that I will die first, as it was meant
to be. I also wonder what it would be like if I stayed in a place where
only blind people lived, all old and blind, in Minas Gerais there is
that kind of place. I think more about worries than dreams!
I consider my future uncertain. I think that disability makes
you think in this way, “What will happen in the future?”. Because
when I had everything, I knew that one day I would be old, and
would be in a situation of old age, of fragility. But, imagine you being
blind in that same situation. Having a disability, needing someone. I
know that there are many elderly people who live alone, just like the
man who came to visit me today, who is 91 years old. But would I be
able to be alone with my disability? Because with old age, hearing goes
out, everything goes down. I think how difficult it would be for me
to be deaf as well as blind, for example. So, I think that if I were to
become an old lady, in the future I would stay in a home so that I
wouldn't disturb anyone, or be left alone at the mercy of my own fate.
While the uncertainty of the future does not arrive, I try to make my
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history in the present, seeking as much knowledge and independence
as possible, whether in my personal or professional life.
At first, it was just another course…
I remember well the lymphatic massage course I took when I
still had my sight. The eyes made all the difference in the way of
learning, I could visualize the person's body. In the theoretical part it
was also all different because I had more possibilities to study
independently, besides the classes, I could read the books, handouts,
do research, it was all much more comprehensive and accessible. It
was much easier to do the course seeing, it was very rich in this aspect.
When I was seeing I couldn't feel every human part as much as now
that I'm blind, today the touch is very different because before I was
based predominantly on what I saw, even touching, I trusted my eyes,
now I really trust what I'm feeling. The person who sees believes in
what he sees, I believe in what I feel and touch.
At that time, although I believed I had a special vocation for
massage, since my friends would ask me to massage them even before
I thought about the course, I already had a job and an infinity of tasks
and possibilities. As I was very shy, I left massage aside and started to
dedicate myself to other things and plans. I had a masseuse course,
but I wasn't thinking of making a job out of it.
I only really dedicated myself to massage when I started to
take the course again, already without sight. At the beginning, it was
just one more course for me, as I already had a basic notion of what
it was, I decided to take one more, but with no intention of it
becoming my profession, after all, I was already receiving a pension.
It was simply one more course to occupy my mind, to pass the time.
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I started to take the course, and I became interested because I realised
that it was much more than what I imagined it could be, it was more
intense than when I did it with my sight unimpaired. Now I had
another world view and I also identified myself with massage therapy.
Being able to help others with therapy, to be of use to someone even
in my current condition, was decisive for me. It is very sad to realise
that people think you have become just someone who needs help and
never someone who can help.
I started to worry about questions such as, ”What will my
future be like? What can I work with and how? What am I capable of
achieving without the help of sight or other people?”. Massage became
again a possibility of work, income, independence and above all, a
possibility of fulfilment in helping other people! Before these
reflections, I did two new courses of Relaxing Massage and
Therapeutic Massage. Yes, it was much more difficult to learn, to
memorise, I had to be very persistent, many times I did not feel like
going to classes due to so many obstacles.
Despite the tiredness and difficulties, or even the lack of
enthusiasm on many days, touching a body after being blind was a
very good sensation, of discoveries and of looking carefully because
most people only see superficiality when they rely on sight. I can see
that the skin has an apparent bruise, but I don't perceive a lump
hidden behind the bruise unless I touch it and feel it. During the
massage, if there is a lump I will feel it, but if I relied entirely on my
sight I might not notice it. When I could see, I didn't fully feel arms,
hands, legs, every part of a person's body, it was something based only
on looking. Re-learning to look beyond sight, to feel, to touch, is
what gave me the strength to continue.
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Besides me, other people with the same disability were
enrolled, it was a course offered specifically for people with blindness
by the initiative of a teacher of the association. To give this course for
people with blindness was an old dream of professor Wagner ever
since he graduated as a massage therapist many years ago. The class
was formed of people with low vision and blindness, only the teacher
was a sighted person. It was a course mediated by the association for
the disabled. The city hall provided a space, they got some stretchers
and we had the classes. Many times, this teacher had to use his own
resources so that our needs could be met.
I met Beatriz in the association who accepted my proposal to
teach the course as a volunteer, since they couldn't hire me at
that moment. Beatriz arrived intending to do the course, and
she persisted a lot, she attended all the classes, she hardly ever
missed them, unless she had some medical appointment or
something like that. Beatriz did all the courses and the result
is visible, nothing would help if she simply wanted to become
a professional in the area but lacked the dedication to attend
the classes. The greatest merit is undoubtedly Beatriz's
dedication, effort, and commitment. In each class, three or
four students stood out as the best, and Beatriz was always
among them. I would ask the students to apply the massage
on me, to train and for me to notice if they were getting it
right, to feel the pressure they were putting on. Even though
I did not learn it that way, I taught it that way. In the practical
activity, Beatriz was always among the few who stood out and
did it right (Wagner, teacher of the massage course).
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Originally, we were fifteen people between blind and low
vision. In the end, only three blind people graduated and, out of
these, only I work with massage. The group of blind students is not
united and not interested in things, that is the truth! The blind are
not united, when they start they are not interested, they complicate
things and I get very aggravated with this.
The greatest obstacle in this course was the fact that the
majority were taking it just for entertainment and not to actually
learn a profession. There were few who really had the gift for massage.
It was also challenging to deal with such a diversity of needs of each
person, after all, it is not because we are blind that we are all the same,
we have different difficulties and abilities.
For example, since today hearing is all I have, if I am talking
to you and there is noise and side conversations, it bothers me. Side
conversations of those who did not take the course seriously
prevented me from concentrating. There was also a student who,
besides being blind, was deaf, wearing braces, so imagine how
difficult it was. The teacher spoke and for me everything was fine, but
when the teacher asked her a question she answered that she was
hearing very low or almost nothing. The teacher would start the class
again from the beginning, and we hardly went any further.
The teacher taught each student by touch, we lay down in
ventral, dorsal, right and left decubitus, we knew the basic principles.
Wagner started from the beginning talking about the three points and
showed each student with his own hands which were the three points.
The course took a year because he had to teach the students
individually. In each class, he had to recap what we had learned in the
previous class by doing it in practice again and only then presenting
the new content, and so on. It was our way of memorising the content
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since we didn't have the resource of reading a workbook. Only two
people in the course knew Braille, the rest did not. My particular
strategy to memorise, besides what the teacher did, was to practice at
home with people. The teacher used to tease us telling us to do it on
dogs, cats and teddy bears (laughs). I used to do it on my family
members. When I couldn't remember I asked someone to read the
workbook. It was difficult to memorise certain things, like all the
points and the movements.
Beatriz had no difficulties, she even helped, she gave rides to
other people, she always brought one or two more colleagues
with her. I did not imagine that it would become their
profession, I wanted to teach without expectations, I knew
that this would depend entirely on them, I taught without
expecting them to become professionals. I fulfilled my role of
teaching the whole, from how to attend the patient to how to
charge for the service, in short, how to receive a person, how
to make an anamnesis form, how to offer packages, what and
how to charge. When Beatriz said during the course that she
was practising at home to memorize, I was very happy because
there are six hundred movements, thirty movements in the
arm alone, a long sequence and if you don't practice you
forget. Mastery comes through repetition, through practice, so
I asked them to repeat to me what they were learning. They
learned this way, using touch and orality, I took each one's
hand and showed the movement, the pressure, the people who
could not be touched had to miss it because it was necessary
(Wagner, teacher of the Massage course).
It took a lot of flexibility, creativity and adaptations for us to
learn. During one of the courses, I learnt that I should apply the
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technique through the cloth, without the person needing to take off
their clothes. However, being blind, I would not have the full
dimension of the body. This massage is ancient, it came from China,
it is the Anmá technique and in royal times, the slaves who applied it
could not touch their masters, so they applied it over the cloth.
Even today, there are people who do not like to be touched,
depending on who is doing it. Wagner really wanted us to apply the
technique on the fabric, but I intervened and explained to him that
for us blind people, it is not possible! I explained why, and he ended
up understanding that for us, it is crucial to have direct contact with
the body, since touch replaces our vision. Wagner listened and looked
at our learning needs and adapted the technique so that we could
apply it without the tissue over the skin.
It was a simple course, but rich at the same time, for one year
it taught a lot! Intending to learning more, I also went to the teacher's
house accompanied by two other students who took the course
seriously. This course allowed me to receive something very much in
demand nowadays, which is the diploma. I know how to do massage,
but I can only prove it by having a certificate. So, it was something
important that I always thought about to prove my qualification. I
thought that doing the recognised course and certificate would be
indispensable! A certificate that proves that I am capable, that I am
fit for work, that I have a profession. A certificate shows that I have
really made an effort, learned, overcome and that I can be in the job
market in the same way as other non-disabled people.
Beatriz is a normal person like the others, but she identified
with the technique, she liked it and wanted to dedicate herself
to it. I did not treat her differently from the others, but she
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stood out, those who gave up did not identify. She always
asked me if I was right, if I was observing her, as a student, she
was always more serious than the others. She knew how to play
at play time, but she also knew how to be serious when she
needed seriousness. Beatriz was special in that way, she was
not flighty, but a dedicated student, hard-working. I always
used to say that I would like to pass to the students in the
training 100% of what I knew, but I could only transmit 80%
and of that, they would apprehend 60% and apply 30%.
Knowing that, Beatriz tried to make the most of it, she always
worried about questioning me if she was doing it right, she
was always correcting herself, always (Wagner, teacher of the
massage course).
I have never been through a job selection after being blind,
but I have blind friends who have and told me how it was. The
preference will never be towards the blind person, but towards
someone who doesn't have a finger or something like that, or even
the deaf person is at an advantage because he sees and can do the job
even though he can't hear. For the blind, it is much more difficult.
I remember that, back in São Paulo, I received the news that
I wouldn't be able to see again, they said, in an attempt to console
me, that I could work and that there were many blind people who
worked in clinics. They just didn't tell me that these were exceptions,
that they had higher education degrees or that they performed specific
functions in the area in which they were trained. The blind
professionals mentioned by the doctor who work in clinics in São
Paulo have higher education and work in areas that do not require
sight. I had a blind friend who worked in a factory in a big city,
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producing crates. As he knew the job, he didn't need eyes to build
them.
The doctors did not consider that I live in a country town,
which is somewhat limited as far as inclusion is concerned, the
visually impaired people in my town are working as what? They are
begging on the streets! If one looks, one will not find people with total
blindness working in my town. Maybe they will find someone with
low vision, but not a person with total blindness. As I said, I have not
been through experiences like these looking for work, but I know
what it would be like from the experiences of friends who have been
through it.
As nowadays there is a lot of eroticism about massage, it was
renamed massage therapy, but I realise that the doors are
always closed to professionals in this area. So, I pass all this on
in my students' training, of the difficulties and obstacles they
will find in this profession, even more so if they have
disabilities and are seeking inclusion, I try to pass this
awareness on. However, I have to show that despite all the
obstacles, in the end it is rewarding, it is transforming, it is not
a mechanical work (Wagner, teacher of the Massage course).
I always try to keep improving myself and never stop
studying, as much as possible. Nowadays, there are many courses,
even on YouTube, in which I could improve myself, but being blind,
how? When I took the course, the teacher asked me to go on YouTube
and look for some content. I found it, and it was no use because they
simply talked as if everyone was sighted, how would I know where is
the point he is pointing? You can't tell just by listening. When I
wanted to research more about fibromyalgia because I was going to
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assist a client with this, I needed other people. So, I required the eyes
of Elis, Juliana, Paola, various points of view because they could not
always explain what they saw, I needed various people for me to reach
my own conclusion.
I told her in the first appointment that I suffered with
fibromyalgia and then a remarkable thing happened, she
started studying my disease and adapting the massage. She
started to touch points such as the back of the neck, below the
shoulders, knees and told me that she was studying the
subject… and it's fantastic for me, I can't do without massage.
She was adapting to my problem, she was studying how the
massage would be for my specific pains and this was the
differential that made me stay with her until today, I've been
with her for two years now. I've been to other masseurs and
physiotherapists, and they never did that, they never adapted
the massage just for my needs, but Beatriz did. That was the
big difference between Beatriz to other professionals I met.
She mixes other types of techniques such as relaxation and
instruments such as stones and this is great for me, I have been
able to quit several medications because of the massage she
does. It has been very important (Ivana, Beatriz's client).
She still has the desire to grow, to take other courses to deepen
her knowledge. She would like to do a Reiki training course,
but it is a two-day course, and she would have to go to another
city, there are expenses, and would they accept a visually
impaired person there? There is all this struggle. She would
also like to do a bamboo technique course, and would the
teachers be willing to adapt to her needs? Beatriz has a thirst
for learning and if she had more opportunities, she wouldn't
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miss out. I don't know what her family's possibilities are, but
if she had more support, more help, someone to provide her
with a car, suddenly, the Health Secretariat itself, which
should invest in her training, give her the conditions she
would certainly take advantage of all this. Beatriz is someone
who deserved a support from the Government, a political
support, a bigger support from someone (Wagner, teacher of
the massage course).
Today, I am proud of my choices and of my journey, I am a
certified, safe, qualified professional, and I work independently since
it would be very difficult to enter the formal labour market.
Few people want to fight for this cause, more resistance
than help…
I was reading the introduction of your article and thinking
how sad the reality of the person with disability is! The data from the
Annual Social Information Report ("Relação Anual de Informações
Sociais" - RAIS) show that the number of people hired is very low.
Courses, universities, involve the work of many people, gee, a lot of
things, and even if a businessman would like to help in an isolated
way, he wouldn't have enough strength to move something for being
isolated, and the handicapped person ends up giving up for not
having the strength to fight. Few people want to fight for this cause.
I was reading the article, and it got me thinking that, in the past, the
Catholic Church saw the disabled as sinners who deserved to be
isolated and to live off alms; people didn't even go near them.
Nowadays, things have changed, but if we stop to think about it, even
today the disabled are still left aside, they are not seen as sinners, but
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they are seen as pitiful and incapable of making a living out of their
work.
I even thought of setting up a team with Beatriz and two other
people who also stood out so that together we could offer
massage in a sports club and hotel in a nearby city, but they
did not accept the idea well. They said they did not think it
was convenient for blind people to be working with massage,
maybe they thought I was trying to take advantage of their
disability, which was not true, I noticed the capacity of these
people and would be working together with them, I would
also apply the massage with them, it would be an opportunity
for both (Wagner, massage course teacher).
No matter how much people evolve, how much the world
evolves, I believe that the disabled will never be seen differently, ever.
No matter how much they fight, try, and I am sure that they will
fight… in the end, only one or another will manage to get
somewhere, most of them will give up. They give up because it is a
tiring struggle. We have to fight, fight, fight to achieve something
small. Everything is very bureaucratic and difficult for the disabled,
perhaps with the intention of making them give up. Imagine how it
would be to go to college? Very difficult! Very complicated!
The problem of work for the disabled… many of them want
to, but have nowhere to work. It's what we always talk about between
us, when a vacancy arises, it will never be for the severely disabled. In
fact, a few days ago there was an ad for a shop that needed to hire
disabled people, telling them to bring their resumes. But, a blind
person, a totally deaf person or a wheelchair user goes there… see if
they hire. They don't! They get those disabled people who only
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“limp”, so for these types of disabled people there is work,
understand? But for a blind person or a totally deaf person, a
wheelchair user or another more serious disability, they don't find
work.
In my work, I am the one doing something for someone!
When you can see the wonders and opportunities that your
vision can provide, things get a little easier and with that, the chances
of work end up being more favourable for those who can see.
However, if you don't have the same vision, the disabled person sees
their opportunity soon being taken by another person who has a very
small disability compared to yours. How can I compete with someone
who has low vision when I am totally blind? Undoubtedly, who
would get the job? But that doesn't mean I should keep whining, I
am much more than all that, and for that reason, I won't feel inferior.
Work ennobles the man, isn't that what they say? When I
took my first massage course, I could see, and it was easier, after all I
could read the books several times, the drawings illustrated the
positions of each movement, the lymphatic massage showed me a
wonderful world of knowledge where the human body is so big before
my hands. However, it was in my second and third courses, now blind
that I really found myself, massage therapy makes me enter an inner
peace when I apply it, I think about how the body is so big and at the
same time so small, the points that are relieved with a touch, but that
can also be easily hurt with a wrong massage.
Being able to make my hands travel a path that leads the
person receiving the massage to relief and relaxation, there is no word
that expresses the feeling of being able to help others. I don't know if
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everyone feels the same happiness and values touch as I do, but I
would like everyone to feel the same pleasure in working in something
they like, in loving their profession, in recognising it also as a gift. I
don't want to stop taking new courses, even though I know that for
the disabled things are more complicated, even so, we can never stop
seeking new knowledge (Text taken from the Self Report
instrument).
I could see this sensitivity in Beatriz, she evolved a lot, not only
in terms of massage, touch, but also in terms of the energetic
issue, in exchanging energy. I could see that she was passing
on something good. She managed to understand that she was
a vehicle that transmitted good energies, she didn't need to
take a specific course to understand this. She didn't need a
Reiki certificate, but she learned by seeing the teacher doing
it, hearing about how it is done, she understood this and the
massage I received from her, I realized that it healed me
(Wagner, teacher of the massage course).
The technique I use is called Anmá, a very traditional and
ancient Chinese technique. Therapeutic Massage is the one I most
identify with and enjoy doing. However, I mix the techniques, I do
three types of massage on one person. I can use a pumping technique
which is part of the lymphatic, a “figure eight” on the back which is
part of the relaxing massage and all the points are from the
therapeutic. In therapeutic, I will just pick and squeeze the points, so
I mix three types of massage into one. Most people expect a relaxing
massage, so why not finish with a relaxing massage? I adapt a bit of
one, a bit of the other to be complete, covering all aspects.
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Because today I have another world view, I am identified with
massage therapy. Being able to help others with therapeutic massage
was decisive for me to choose my profession. Being of use to someone
even in my current condition was decisive.
Now, I'll tell you about my work routine… I never like to
leave things to the last minute, it makes me nervous. If a client
suddenly shows up and my house is in disarray, I'll tell him I can't
take care of him. Firstly, because I have a disability and it takes me
longer to do things. As I like everything to be right so that I don't
have any worries at the time of the massage, I have established a
routine to ensure this. On the day I have a client, I wake up earlier,
clean the whole house because I would never serve a client with a dirty
house! Certainly, the client looks at the cleanliness of the
environment, I myself would notice this when I was served and might
not even comment on it with anyone, but I would notice it.
Cleanliness says a lot about the person, for example, if I received a
massage in a dirty house, on a dirty stretcher I would be disgusted, it
is a set of things for a good massage. I tidy up the house and the
massage environment, I remove any rugs or objects that do not belong
to the environment, I prepare everything for the person, if it is cold,
I warm the blanket, although it never stays warm until the person
arrives (laughs). I take a shower, put on my work coat, and then I
select the songs. I try not to always play the same songs for the client,
I always try to vary. The client arrives, and I apply the massage
(Conversations arising from the instrument A Day in the Life Of…).
I try to schedule only one person a day, unless it is an
emergency, because I value the quality of care and also because of the
situation of my arm. It is an arm that I cannot spend half an hour in
the same position because when I try to change it will be numb and
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painful, so I need to massage it and do exercises to make it come back.
The act of doing the massage on a client demands a lot of effort from
both arms, in one aspect it is good to stimulate it and not let it
atrophy, but on the other hand, some repetitive and circular
movements can cause pain, and so I avoid doing it with this arm, even
so I can offer the client what she deserves.
I don't like to treat two clients in the same period because the
quality I offered the first one, won't be possible for the second one.
It's more than two hours of massage, it is always longer than that
because I don't get hung up on the time, I don't mind going over ten
minutes or half an hour of the established time. I avoid scheduling
two clients on the same day or period because the quality of service
would drop too much, I know I wouldn't make it because of the pain.
I prefer not to do a bad job just to make more money, for a greed that
today, for me, is not what really matters. Money is very important, I
survive on it, but it is not the main thing for me, it is not the focus.
Work helps me mentally, it helps me a lot!
With the pandemic, I was out of service for a long time and
even with the relaxation it's not the same, the regular customers still
haven't come back out of fear. For me, it was very difficult to deal
with this, very difficult indeed! It was more because of the
psychological part because I had just got married and moved to this
house when the isolation began, and I stopped doing the massages.
Working calms me down, I even think that the good it does for me
is greater than for the person who receives it, in the sense that when
I am applying the massage I can get out of my world. If the person
speaks to me, I don't have that feeling, but if the client remains silent,
it's just me and the body in all its grandeur. I go far away from there,
I disconnect from external things, I am exploring a human being in
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all its grandeur, unveiling every mystery. Because I am blind, if I am
not totally connected with this human being, some things may go
unnoticed like some points, so I need to be very attentive to what I
am doing.
Of course, when it is already a known body it is easier, even
with the person talking, I can perform the massage in all points,
however, if the person talks a lot during the whole massage, it may be
that they do not pay attention to what was performed and may
wonder if I really did it. She may think it was too fast or something
wasn't done, but in reality it's because she wasn't connected, feeling
the effects, wasn't paying attention. I believe that being blind, I have
the advantage of being more sensitive to my client's every point and
need, to a much greater extent than a sighted person.
The main motivation for me to work is the mind. Work is
something that helps me a lot. After the assault that I experienced,
my focus became the fear that I feel, and it was difficult to detach
myself from it. Work helps me to focus and think about something
other than the aggression and allows me to stop thinking about what
happened to me and even forget on the day that I am attending. The
day I attend to a client, I have so many things to do that I don't think
about it. Of course, if I am working, and I hear a neighbour banging
the object which I was assaulted with, I will be distressed, but I know
that it will pass because I will be focused on something else.
So, I come back to the point that when I am giving massages,
I am helping someone. By helping myself at the same time, I am also
being helpful. The period when my aunt was very ill, and I took care
of her by giving baths, was very rewarding for me, first of all because
I was doing it for someone I loved, but it would have also been if it
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was for a stranger. I was being helpful to someone, I was the one doing
it.
This aspect is still very difficult for me to deal with. Before, I
was independent, I would go out and pay my own bills, solve my own
problems, I didn't need help from anyone. Today I require someone,
and unfortunately, I will do so for the rest of my life, on certain
occasions, of course, only on those when I cannot accomplish
something by myself.
But, at work performing the massages, it is different because
there I am the one doing something for someone. I work for the
money, to forget what happened to me, to help someone and to be
the one doing something for you! It's not you and me doing it, it's
just me. I don't need someone to give the massages, I'm doing it by
myself, and I'm getting it done. Of course, sometimes I need Elis to
check if everything in the room is alright, I need her to check if the
sheets are perfectly clean, towels, details, but I'm the only one doing
the main thing, me and only me!
I have good relations with the clients, but a blind
masseuse stirs up curiosity…
I have excellent relationships with my clients, I can't limit
myself to just the moment of the massage without caring about the
person after it's over. I can't help but send a message the next day
asking if the person is better. The person may even think it's because
I want them to come back, but it's really out of concern for them. My
goal is to make the person feel good, to make them feel at least a little
better about their pain, so I am being honest when I want to know
about their well-being and wish them to feel better or to be relieved
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from their pain. I am always honest with my clients and I don't make
false promises.
Clients feel at ease with me, I have never noticed anyone being
embarrassed to receive a massage. I think people don't feel so ashamed
because I am blind, this makes the person not to feel embarrassed
because they think “she can't see me”. Of course, there are exceptions,
there are people who believe that I can see a little, but even so, it is
different for them, even if they think that I can see a little. This can
be an advantage for me over other masseurs who see because no
matter how much I touch them, I can't actually see them.
Do you think I know you? Do you know me? But I don't
know you because I am blind. My blind friend once said to me,
Look, Beatriz, no matter how many years we have been friends, I don't
know you and you don't know me!” No matter how much I touch the
person, I will never see them, no matter how much I want to, I will
never see them. In massage, blindness can end up helping, if I were
shy, I would also go to a blind person to get a massage, without
inhibition.
The fact that I am a blind masseuse also stirs up curiosity from
some people, as they have already booked a massage just to ask about
my story and because they knew I was blind. Honestly… I don't
mind! If the person wants to see how it feels to be massaged by a blind
person, I show them. Regina, for example, asked many questions
about the assault and wanted to talk about things that I could not talk
about at that moment because I was doing a massage and could not
be so tense. If we talk about things that, I will laugh and relax all right,
but to talk about a tragedy at the very moment when I am giving a
massage is quite different.
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As it was the first day exploring her body, I couldn't say much
as I was getting to know her, however she kept asking. I would stop
massaging when answering, and those two hours seemed like an
eternity to me. I even went so far as to ask her to stop talking to me,
so I could continue. To make matters worse, she brought a friend
along as an escort who was also asking me questions. I did not have
as much experience and security as I have today to ask for silence and
explain that it was necessary, today I already know how to handle
these situations.
This woman was one of the people who never came back, she
came just out of curiosity. She would be a person that I would really
like to come back because I would apply the massage the right way,
without her talking, I would like to have the opportunity to show my
work, but she didn't return. I know that in this specific case, my
inexperience also hurt because I couldn't set the limit and show my
work. Initially, I was ashamed and afraid of doing something wrong,
now I have confidence, an appropriate place that allows me to close
the door if there is a companion so that he does not interfere, and I
can concentrate, but at first, I had none of this.
So, some clients approached me because they felt at ease with
someone who cannot see their bodies, others out of curiosity either
because of my story or to know what it is like to be massaged by a
person with blindness. There are people who seek a blind masseuse
because they believe she is a more intuitive and sensitive professional
or has a special gift.
Beatriz is very much about spirituality. Massage therapists are
called 'light angels of the earth' because of the time they
dedicate to another person, because of their patience, because
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of what they transmit to the other. Beatriz is not just a good
professional but someone who transmits a light, she is an
instructor, an agent of light, so she is above a mere masseur
profession. The profession of a masseuse is just the vehicle for
what she is transmitting, her training, her suffering, the result
of a polished, broken diamond. She was even more broken
than any other professional, materially speaking, she was even
more broken. So, she is shining more than us. She has a lot to
pass on to people (Wagner, teacher of the massage course).
Once, I received a phone call from a client who wanted to
receive the massage precisely because she knew I was blind. As she was
pregnant, I couldn't give this massage to a pregnant woman. She said
she really wanted it because when she was living in São Paulo, she had
received a massage from a blind person and would like to have it
again. As I couldn't at the time, I ended up losing her contact and
didn't look for her even after she had the baby. There is also another
question, when it is a strange person, it is difficult for you to
announce that you are blind, it is difficult, for fear of prejudice
because prejudice exists.
There are also those who question my blindness. Many people
have asked me during a massage, “are you really blind?” or “can you see
a little bit?”. It has already happened that a person calls to book a
massage and I tell them I'm blind, usually the person doesn't show
any prejudice, on the contrary, they answer in a very natural way,
Oh, OK, no problem” and I'm more anxious waiting for the answer
than the person, for their reaction. Ivana is one of my oldest clients,
but it took her a while to believe that I am, in fact, blind.
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In the course, I passed on this attitude to the students, this
concern with what the other is feeling, thinking, and I noticed
that Beatriz, even though she wasn't blind since birth, but after
her accident, even when her back was turned, when she
noticed that I was coming, in silence, she already turned and
positioned herself in my direction, she even said 'Wagner, you
are already there'. And I would answer, 'Yes Beatriz, I am
already here'. I noticed that wherever I walked, she would
accompany me. I would walk from one side to the other
observing everyone, she would accompany me with her head,
looking for me to evaluate her. She developed this capacity to
accompany someone with her face, even if the person is four
or five metres away. I didn't know her before the course, but
I believe that the activities developed in the course contributed
somehow to Beatriz's evolution, and this caught my attention
(Wagner, massage teacher).
I don't even know what to say, or the other blind people are
very limited, or I don't know what it is. I take it as a compliment and
I don't get offended, by the way, it is very difficult for me to get
offended by something related to my disability, unless in a discussion
you call me blind with an air of cursing, then I feel like tearing your
eyes out too, but otherwise, I take it easy. Helena, my friend, cannot
be called blind even in jokes, she says she is not blind, she is
handicapped. I think the opposite, I accept being blind, I don't like
being deficient, it seems to me something so limited. I prefer to be
blind, I am blind! It's not a lie!
However, regardless of the reasons that bring each client here,
what I know is that I attend each one with the same satisfaction and
dedication. I have never felt any kind of discrimination, what I
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perceive is the curiosity of others, but not discrimination. I feel that I
am the one who discriminates when I think I have not done well, but
not that the other person thinks or says the same.
I am perfectionist and demanding with my work, not just to
prove that because I am blind I am capable, but because of my own
personality of wanting things to be right. However, I know that it
helps to change the concept that some people have about the blind
person. Of course, most people have an opinion and don't allow
themselves to look at the disabled differently. But, some change the
concept of “Wow, she's blind, and yet, she works, she's hard-working,
she's capable. This opens another perspective about the disabled, it
breaks the idea that the disabled person is useless!
After I started giving massages I changed a lot, not that I do a
lot of them because I do restrict myself in the services, because of the
disability, because of the difficulty with my arm, because of the
prejudice regarding my sexual orientation, there are several obstacles
that prevent me from doing even more, but I still choose to work and
overcome my limits. I choose to work because when I give massages,
apply some new procedure that I learn, finish and ask how the client
is feeling, and I hear what Ivana told me that she was feeling well, that
she feels like a diva after the massage, an enormous joy invades me
and there is no money at this time that can overcome it.
Sometimes what I earn doesn't cover the expenses I end up
having with the tools I use, but nobody needs to know. If I didn't
work, things could be much worse, work really builds me up. We all
have to work, everyone should have the right to work because that
would help a lot in overcoming. Even working inside, not leaving the
house and interacting with few people, it is still rewarding because I
do not feel totally exposed to the stigma of society.
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Work for me is a way for me to face my disability. It is the
way I found to overcome my own limits, I can do it, I did it! I do not
pretend that it will change people's conception of me, nor do I do it
to prove anything to others, only to change my own conception of
myself and prove to myself that I can do it. I could be quiet at home
receiving my help, I don't need to be giving massages, I could be
protected in my own little world, but I feel the massage is more
beneficial for me than for those who receive it because it helps me to
take care of my mind.
Work has changed my mind, it's good for me mentally. I
always liked to work, so that didn't change. It does me good to know
that I am cleaning the house, getting ready because I am going to
work. Work has always been a part of me, to know that I can work
despite being blind is much better! I don't do it to prove anything to
anyone else, but to feel good about myself, although I believe that it
will have an impact on others…
My profession represents much more than a salary, it
represents my autonomy, something that I do without needing
someone else to do it for me. At that moment I don't need anyone
else, I just need me. I may need someone to check if something is well
cleaned or well positioned, details that help me, of course, but to
apply the massage, I don't need anyone else, just myself. This helps
me to grow, to strengthen myself, to grow even spiritually. In short,
my work means strength, growth, autonomy, dedication, passion,
and love for others!
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All disabled professionals cut from the same cloth…
When I'm giving massages, if I'm stressed, that's what relieves
me. When I know that the person arrived in pain and left feeling
better, it does me good. Today I wasn't supposed to give any
massages, but Ivana sent me a message saying she was in pain, feeling
unwell and asked if I could help her. Immediately I said yes, I woke
up early, arranged everything for her visit. When I'm massaging her,
I know it will ease her pain, I feel good helping her. I feel good!
I avoid working with men, it is more difficult, there is a
whole context involved. Among other reasons, because of men's
sensitivity, you need to be more careful, you can touch them, and
they interpret it differently. A man's vision of a masseuse is very
different to that of a woman. If it is an acquaintance, the husband of
a friend, I will do it, but if a stranger asks me if I do a massage, I
answer no because I don't know what he is like, there are many
naughty people who come with other intentions.
I know blind masseurs who have not taken the course and
advertise that they do massage, but offer another type of service, an
erotic massage. Some men seek this type of massage because they do
not differentiate the professional who is trained from the one who is
not, they generalise. There are various types of massages, and it has
happened to me that a man has asked me if I do a Thai massage, in
which the supposed masseuse rubs herself against the man and
touches certain points. There are many things involved, I explain very
well the type of massage I perform so that there are no doubts. That
and avoiding attending men and sometimes even women, depending
on who it is.
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I met a blind person in the association who adopted this
attitude and, even without any course and knowledge on the subject,
offers another type of massage. This makes me very angry because the
client is in pain and ends up being cheated, it's an abuse, a theft, the
person is in pain and trusting the professional who doesn't even have
the knowledge and training for this. Although most of this person's
clients are men, and I can imagine why… they seek exactly the
eroticism and sensuality that she offers as a massage.
The fact that the person I mentioned performs such massages
without a course that would qualify her and with erotic connotation
hurts me a lot because people tend to put all deficient professionals
in the same package. She didn't want to take the one-year course I
took in order to become certified, she just went to a masseuse, got a
massage and went out applying it to people as if she were a
professional.
For this reason, I need to be very careful about who is the man
who would come to my house to get the massage, sometimes it is
better to say I am a massage therapist than a masseuse because massage
encompasses things that people end up confusing. Depending on the
person I'm talking to, I introduce myself as a massage therapist, so
they don't mistake my work for erotic elements usually associated
with the word “massage”. This week, a man with whom I have had a
relationship in the past called saying he wanted to get a massage, but
I can tell from his tone of voice that this was not exactly what he
wanted. How do I get out of this situation? I replied that I didn't have
an opening, but that I would let him know when it came up.
However, I won't get back to him because I know he wouldn't be
there for my work. That is why I prefer to attend women or men who
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are married to friends of mine because it requires a certain amount of
caution when it comes to men.
For us blind people, it is already very difficult to find work
and courses because we are considered incapable, and I still come
across a person who claims to be a masseur when in fact he isn't, he
doesn't have any training and still puts a sensual connotation on what
he does. What happens to my work? It is devalued! Besides increasing
the prejudice against us. Most of the men in the association seek her
massages, and this distressed me because I knew she was not a
professional and was contributing to misconceptions about real
professionals. She knew how to do common movements that any
person does in their daily life, without technique and no knowledge
about the body, the points, results, diseases.
I've had people come here to get a massage just out of
curiosity for different reasons, but the reason that really bothers me is
about the seriousness of my work. I'm not better than anyone, there
are people better than me, and whatnot, but, if I'm giving someone a
massage, that person can be sure that I'm doing it with
professionalism, respect, and love for the profession, which nowadays
is difficult, people value greed or charlatanism.
I've been on the other side…
This week, something happened that made me very sad. My
godmother had a gallstone and had to go to the Emergency Room
alone. When she told me that she was there in pain and alone, I asked
her why she hadn't asked me to go with her. The next day she would
return for her exams and I offered to accompany her, and she asked
me what I was going for if it wouldn't do any good. Hearing this was
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like feeling a knife stabbing my chest. I replied that my company
would at least be good enough to call the fireman for help, and she
answered that she could do it herself. I cried a lot, I was sad, and I
thought it sucked to be blind. Some time ago, I offered to be a
companion in a hospital room when she had surgery, and she
answered that she could not have a companion, but soon after she
posted on her social network thanks to the person who accompanied
her…
Blimey! A blind friend of mine spent a whole afternoon in
hospital and I accompanied him, I helped him in everything I could,
I am useful for something, I was very unhappy with her answer.
People limit the blind a lot. There are situations in which I myself
know that I can get in the way and prefer not to participate. If it's a
situation that demands haste and agility, I refuse to participate
because I know I can't, and I might get in the way. However, there
are situations in which I can help in some way, such as keeping her
company, chatting, picking something up, but if that is what my
godmother thinks, I respect it, I don't want to have to listen to it any
more, I don't offer myself for anything else in relation to her because
if I am compared to another companion because of my sight, it is
certain that I will be at a disadvantage.
It's very difficult for me to feel at a disadvantage with
someone because I always try to keep up with everything they're
doing, but I've had moments when I felt at a disadvantage. The
professional who is making a piece of furniture planned for my living
room, whenever he comes to discuss the details of the furniture or the
budget, he asks to speak to Elis and if it's not possible, he simply
doesn't deal with me because he considers me incapable of solving
them. He came on Elis' day off, brought the specimens and dealt with
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her. However, the part concerning the financial budget we agreed
would be dealt with me. Even so, when he handed me the paper with
the figures, he asked Elis to call him, totally doubting my capacity.
Elis pointed out that she would not call because this would be
resolved with me, but the professional never calls me and always the
person who has the vision, this annoys me, but I don't say anything.
This puts me at a disadvantage, I get irritated.
In a shop, I am always ignored as if I am not there or as if
Elis is my nanny. People believe that Elis works for me, that she is my
carer. Once, when I went to a checkout in a supermarket, the girl
asked if she wasn't working that day because she wasn't with me.
People constantly mention how well looked after I am by her. Gee,
do they think I do nothing? One woman in church even told me that
she takes good care of me because I am always “clean”. There are
people who ask me, “Do you shower by yourself? Can you take your
shower by yourself?”. I don't know that if I was a sighted person, I
would also think this way, I don't know, I am on the other side of the
story now, but how could I not be able to take a shower? Since I can
be harsh in my answers, I prefer to be quiet, but I feel very irritated
by the situation.
And if in any situation like the ones I mentioned, I really got
angry and expressed or told these people that I am not useless, that I
wash and iron my own clothes, people would say it's because I'm an
rude blind person” or that I'm “stressed about being blind”. I know
people infer this because I have been on the other side and heard what
they say about people with disabilities. When I worked in the factory
I had two deaf employees. They would drag the big objects that made
a loud noise and almost deafened us too. I would gesture for them to
stop dragging and hearing people would criticise me, saying that it
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was because of their disability, that it made them “very angry people”.
They would say the same thing about me if I complained or explained
myself and actually, they are kind of right because we no longer have
patience with everyone who doesn't understand us, which happens
with most people, and we end up becoming more sensitive. Then
they would say,the blind person is so angry!”.
I can foresee and imagine the person looking at me with pity
or incredulity, or even exchanging glances with others on me. I can
imagine these situations because I have witnessed them when I was
psychic. So, I prefer not to argue with people, only if I am on a very
angry day.
In certain situations, I notice that they stop to look at me.
Sometimes I'm walking with my sister and just ahead there are two
people talking, in many of these times they don't give me permission
to pass, they just don't move to the side, so I have to go out to the
street to deviate or ask permission. Juliana gets annoyed and says to
the person, “can you please let us pass?” as if to say, “can't you see that
she is disabled?”. Sometimes it is necessary to touch the person with
the cane and still, they don't give let you pass, they bump into me
and I know that the person can see me, but they don't bother to make
room. I get very aggravated, not because they are bumping into me,
but because they are bumping into a disabled person! I keep thinking,
What would it hurt you to take a step back so that a disabled person,
a wheelchair user or an elderly person can pass?”. Stop and pay
attention to the streets around you, what happens to the disabled.
People don't care, they are always rushing around, talking on their
mobile, and they bump into me several times, all the time, they have
already knocked over my cane countless times because of these
bumps.
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I watched a news report in which the owner of a department
store was criticising the fact that he had to put a tactile floor on the
pavement of his shop because it would change the pattern of the
façade. He suggested that whoever was so concerned about the tactile
floor should put it in. Blind people should unite so that none would
enter and shop in the shop of a person like this! People don't care
about the disabled, society doesn't care about this. People never
believe that they can become a disabled person, just as I did not
believe it. When could I have imagined that I would become blind at
twenty-eight? I would never have imagined it. We don't have that
preparation, thinking, and we don't look at these things.
At the hospital in São Paulo, which is very big, there is a tactile
floor and, besides that, there are support bars. Sometimes I try to walk
independently, but people lean on the support bars and stay there
talking, preventing the passage of those who depend on that to walk.
In other words, besides the structural barrier, when this is remedied,
we have to deal with the barrier of people's disrespectful attitude
towards these situations.
On the occasions when two or more people are talking, I hear
from the sound that they are looking back to watch me after I have
passed them. I realise that they have turned towards me. I feel I am
completely ignored and invisible when it relates to respecting my
needs and the opposite happens, when it relates to labels I am seen,
watched and exposed, I have become the target of comments, pity,
curiosity, criticism, comparisons, a reference point, almost always a
negative thing.
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I have become a reference point
The problem with being blind is that there is a lot of
comparison. If another blind person walks alone, does this or that,
has another ability that I don't have, then what happens, the other
people who see us together start questioning “Wow, Beatriz, but that
blind friend of yours can do something like that, and you can't?” There
are so many comparisons. “Wow, but that blind woman teaches classes,
gives lectures, and you don't?”. There is a lot of comparison as if one
should be equal to the other. Each one of us has our own gift, whether
we are blind or not.
There is still a lot of prejudice. Even the blind themselves end
up being prejudiced against themselves, but this is due to society
being that way. For example, if you watch television shows, how
many times have you seen blind people participating in them? The
other day I saw on a television programme the story of a blind
hairdresser. I was interested in the story, and they started saying that
the person had been blind since a certain date, etc. I stopped what I
was doing to watch it and, thinking it was really cool, I began to
imagine how she could achieve such a thing and that I couldn't even
imagine it. When I say a blind person, I don't mean a person with
low vision.
I followed the programme to the end and found out that she
completely lost her sight in one of her eyes, but still had a percentage
in the other. In other words, she was not blind. At that moment I
stood up feeling angry, I wanted to write to the presenter of the show
and explain to him what it is to be blind. These situations make me
angry because people generalise and believe that the individual is
really totally blind, so I should also do what they do. People label,
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they put everyone in one category as if we were all the same. It's the
category of the disabled, with no differentiation between those with
blindness and those with low vision. And based on that, they compare
you, if a wheelchair user can get around alone in his wheelchair, why
can't the other one?
The blind are not a united group. They cannot unite to fight
for something for the benefit of all. They lack a strong resolve and are
individualists, each one tries to do alone that which will bring only
their own benefit. They don't fight for their rights. Each one for
themselves. I voted for that wheelchair-bound councillor, and she
does fight for us because if it wasn't for her, we would lose many
rights. But I think it's not easy for her to be alone in that
environment. People don't care, they won't put a ramp so that only
she can go up. They don't care about the disabled because there's only
one of them.
Today, I am sure that my disability has made me the target of
comparison and a point of reference “Do you know Beatriz, the one
who is blind?” However, I don't mind that, but there are people who
treat that with disrespect. There is a big difference between you joking
and discriminating, treating with inferiority, saying “That little blind
girl over there”. There is a difference! Most of the time, I take it as a
joke because if I get angry with everything, then there would be too
many things for me to stress about, and I would be considered
ignorant in everything. Of course, it also depends a lot on the person
who jokes. Blind people with blind people, we understand each other
because we are blind, we are at the same level, on the same level.
When I'm with my blind friends, I feel like myself. We all have the
same difficulties, we all bump into each other, we all knock into each
other, the stories are ours, the difficulties are also ours, so it is very
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different from when I am with my sighted friends. If you put a bunch
of blind people where we are… wow… we talk and talk! We joke
with each other, “Give me your hand, it's like you're blind or
something!” (LAUGHS)
Now if another sighted person goes and jokes saying “Oh,
you blind person!”, they will be offending me and I will want to offend
them back! Usually, this doesn't happen, only with the people in my
family at home, strangers have never done it. Except for one time
when one of Elis' ex-girlfriends, who already didn't like me before I
became blind, heard that Elis and I got back together and said, “Are
you going to dump me to be with that blind girl!?”.
I have a story beyond blindness…
The world is not for people with disabilities, people talk about
inclusion, but I am against this way of including by excluding. If I
had been blind since I was a child, I would not want my mother to
put me to study among people who can see. I would prefer to study
in a school where everyone was blind. I would like to… because there
is a lot of difference. No matter how much they tell me that there is
inclusion, that they respect my needs, I am not totally included.
There are many barriers, people look at me differently. I end up
feeling that I am harming others, that I am bothering someone. I do
bother myself! Since I don't want to bother anyone, I withdraw… I
am not in favour of inclusion. I do not want to live among people
with whom I do not feel comfortable, without being able to be myself.
In this so-called inclusion “you have to live together, you have to, you
have to”, everything is an imposition.
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Ask any blind person who went to college or studied among
sighted people, I am sure of it, ask them if it was easy. It is very
difficult! Imagine everyone can see, you being the only one who can't,
having a hard time keeping up, trying to do something you know you
are capable of doing, but that you need someone else to help you, it
is very difficult. So, I prefer to be there in my little world. People are
not aware of the necessary support to include the person with
disability.
For starters, people don't even have the notion of how to
guide a blind person, which is the beginning of everything. The
women who work in the association, for example, do not know how
to guide us even though that's their job! They pull us by the arm when
the correct way is for me to lean on the person. You do not need to
touch the blind person, you can ask if you can help them, and they
will hold your arm, it is they who hold you and not the other way
around. People mistakenly hold the blind person by the arm and the
blind person cannot walk! I definitely become really blind, I can't see
anything, I can't even get out of the place. The ideal is that the blind
person holds you and not the opposite. If you are going to help a
blind person to sit down, just take him in front of the chair and tell
him that there is the chair and let him touch the chair and sit down
himself. Instead, people say “Move away, move away, keep moving
away” pushing you with their hands.
I easily lose my plot in these situations, and then I regret it, I
know that the person was trying to help, however, the excess of care
is irritating! I don't know if it is different for people who were born
blind because it is another perspective, but as I used to have my
freedom before, my independence, I used to do my own thing, it is
difficult to be completely dependent on others. It is difficult to accept
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that they prepare food for me, that they do everything for me, it is
difficult. There are times when I need help, but at other times I can
do things by myself. I have already sewn with a needle by myself, I
just needed someone to pass me the thread, and I was able to sew by
myself. I will do it. I can do it, I can!
I take a crochet course where everyone is sighted, and I'm the
only one who is blind. I'm taking this course for a year now, of course,
I can't do everything they do, but there is a Russian stitch that no one
has managed to do, and I managed to do it. At the same time that it
is enjoyable to accomplish something, there is also the other side. For
example, I know my stitches are not good, I know I made some
mistakes, but people stare and exclaim “congratulations, it's beautiful!”,
and show it to everyone, they comment with admiration and I stare
at the scene and think “Wow, it was not that big a deal!”.
The first round rug I made gave me a nervous, headache, and
I gave up doing it, I said I couldn't do it. I learned the stitch of the
oval rug and I recognised that it turned out beautifully. When
someone else does it and receives congratulations, I realise that it is
another tone of voice and I wish they would use the same tone with
me, without so much astonishment, without exaggerated admiration.
But with me, it is always different, people come and say that
I am a warrior and that they love to see me, someone's husband said
that I am incredible, etc., but I don't see that! It is a strange thing,
suddenly I have become an object of inspiration for others. It's
strange, it seems that I am no longer me. I have to be dressed up all
the time because I'm more visible now, I have to have etiquette so
that people don't think I'm poor or uneducated because I'm blind.
People may point at me and say “oh, poor thing, she's blind, leave her
alone”, as if it was OK that I knock over food or eat with my hands
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because I'm blind. The poor blind person has no etiquette, they don't
need it! I do acknowledge that there are blind people who are, in fact,
like that, perhaps for lack of opportunity to learn, for not having been
taught, for the education they received, and they have more social
difficulties. People tend to generalise, they see a blind person who
does not know how to behave at the table, I am blind too, so they
think that I will be just like them, even when it comes to eating,
having a cup of coffee, we will be the same in everything. People think
that if they put several blind people at the table, they will all be the
same.
The blind person is targeted, so if I go out somewhere people
will look at me because I am blind, because I am with a woman, there
is a whole context, although many people think that Elis is my carer
and not my partner. They ask “Are you the one who takes care of her?
or if I go to a certain shop to buy something and the person addresses
her as if I were deaf too, as if I had no voice. Elis passes the question
to me and I answer, but I get aggravated, this happens to all blind
people, people don't address us, they address the person next to us. I
feel useless. After a while, the person ends up talking to me, but at
first, they never address me. Since Elis knows me very well and knows
that this irritates me, she herself asks the person to address me directly
or even leaves me alone when I am buying some clothes, for example,
she lets me sort it out with the saleswoman so that she is not asked
anything.
Sometimes I'm on display like an object in a shop window,
sometimes I'm invisible, they don't address me. There are people who
pass by me on the street and don't say hello, and that hurts me a lot.
There are some who pass by me on the street and shout “Hi, Beatriz”,
they don't identify themselves, often I don't know who it is, but I
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answer their greeting, happy for the fact that they were considerate
enough to greet me, for being polite to me.
I wish people would see me as a normal person, that they
would greet me when they see me in the street, that they would
continue with the same vision that they had of me before the accident.
This is because I have a whole life path, a whole history of not being
blind, I have a personality, a history of what I was before the blindness
and people don't understand this. Who was that Beatriz? Today there
is only the Beatriz who is blind, as if they erased my past. Of course,
even for me, today there is another Beatriz, only in certain situations
and not all the time, because I still have within me the Beatriz from
before and I will carry her with me for the rest of my life. These are
good moments that I went through, and they will be eternal, there is
no way I can simply discard them. But society sees me as that “poor
thing”.
Of course, regardless of disability, if there is a situation in
which you need help, if you are lost, going through a difficult period,
without being able to do something, and they offer help… then it is
a totally different situation, I will want help, for me, it will be a glory
to be helped in a difficult moment. But, it is not all the time that they
need to see me as “Oh, that poor thing”, I can manage by myself and
for society I am incapable. Even if I know how to do something, I am
seen as incapable!
I don't know if we disabled people… if we try to fit into
society, try to be present, try to make society look at us as a normal
person, look at us with normality, but deep down, deep down, I know
that it is not like that, people look and imagine that certain things
will always be impossible for me because of my blindness. In certain
situations I want to do certain things, but I am stopped. I know I
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won't be able to accomplish certain things if I don't try, but people
don't allow me to do anything. I feel limited and this is where time
goes by, time goes by… soon I'll grow old… and that's it!
People think that besides not seeing, we don't hear,
speak or think…
This week something happened that upset me, although it's
something that always happens, it still annoys me. I went to buy
essential oils in an exoteric products shop. I asked a saleswoman for
what I wanted while Elis looked at some things. I wanted to choose
oils, scents and also therapeutic stones to use during massages. Elis
started asking the saleswoman about the stones and the girl answered.
I asked her if she had rose oil, and she answered briefly, turned to Elis
again and said that she had studied with me. I heard her saying that
she studied with me, and I turned to her, asking her her name. I was
surprised because she was a friend who was around me a lot and never
greeted me at the shop she had been working at for two years. I asked
her why she never spoke to me in the shop, and she replied that she
never attended to me, however, every time I was in the shop, there
were no other customers because it was a very quiet shop, meaning
that she could at least say hello to me. I always lingered in the shop,
enchanted with the bells and other objects, and she was there, but
never greeted me. What annoys me the most is that she didn't tell me
that she studied with me, she told Elis, I was right there beside her,
and she didn't address me and that's one of the things that happens
the most. We blind people think that besides being blind we are deaf,
dumb, we are sure of this! Even in the supermarket, people talk to
whoever is next to me, even if I'm checking the product at the check-
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out, they don't address me. Sometimes I could or should be able to
answer, or sometimes I am giving the money to pay, and the change
is not given back to me, but to the person next to me.
As Elis knows this is one of the things that irritates me the
most, she tells the person that they can address me or give me back
the change. I always called this prejudice, but I see that it is the stigma,
it is the little everyday things that most of us with disabilities suffer. I
think the blind in relation to other disabilities suffer even more when
it comes to being ignored in shops, in supermarkets and everywhere,
it's always “What does she need?” and never “What do you need?”. It is
I who need the object, I who should answer.
There was the time when I went to a shop to buy a shoe for
my father. Because of the pandemic, I couldn't enter the shop. The
girl was showing the shoe to Elis through the glass display case, but I
couldn't see it. I said, “Miss, I need to see it before I buy it”. The
saleswoman answered that Elis was already looking! As if that were
enough. But what about me? I answered,Miss, that's for me, I'm the
one who's going to buy it. Elis helped: “She needs to see it because she is
the one who is going to buy it”. Only after Elis' intervention did she
allow me to touch the shoes. People see me as incapable of deciding
anything, like what I will buy, wear, eat, dress, the way I walk, I am
considered incapable of everything. I would like to understand why
people believe that we are incapable of achieving anything. We do
have limitations, but we can achieve many things. We can do it!
Like this friend of mine from school who didn't greet me, I
remember her, we hung out a lot. After I went blind, I looked for her
on Facebook, but she didn't have me anymore, and I don't know what
happened. She said it could be that her husband had unfriended me
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by mistake or whatever… these are some little things I don't
understand.
Regarding disability, I always feel the stigma in shops or when
I have to solve things and make choices, like the panel in my living
room where the professional was showing the colours exclusively to
Elis and when I approached him to know the colour options he didn't
address me either. In order for this to happen, Elis had to leave the
room, leaving me alone with him. Back to the story of the stones I
wanted for massage, I'm the one who works with them, but the
saleswoman wanted to show them only to Elis, even if I approached,
she didn't address me. My reaction to these attitudes is to withdraw,
I can't talk to the person, I remain serious and quiet. Elis notices and
moves away so that the person has no alternative but to attend to me.
Many times Elis says, “Show her, you can show her, let her take
it, she can decide”, most of the time that's what happens. People need
Elis' approval, she is my voice, I don't have a voice as if I were some
poor thing and couldn't manage on my own. I can only imagine what
happens to blind people who walk alone or go to the supermarket
alone… buy clothes alone…
There are many stigmas and prejudices, people think we are
incapable of anything, that besides not seeing, we blind people also
do not hear, speak or think. Many times, when clients come to my
place for a massage, they are surprised and askWow, are you the one
who cleans the house? Can you do it? Wow, that's so lovely… how do you
do it?”. I feel like answering that it's obvious that I can do it, it seems
obvious, but I just answer “We learn, and we do it”.
The questions are so absurd that I feel like laughing, like the
one about whether I can shower by myself. I try not to show my
frustration to the person, but inside me, I am extremely annoyed. If
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I could react the way I wanted to, spontaneously, I think I would say
things like “Look, I exist, I am here, and you can talk to me directly”.
But, I don't say those things so that the person doesn't get hurt. I
would rather be hurt than hurt others.
Besides that, the disabled person is already a little more
aggravated and irritated than the person without a disability. I had
this perception before, when I could see and saw the attitudes of two
deaf people at my work and heard people commenting that it was
because they were disabled. Today, I go through that myself because
we need a lot of things to defend ourselves in front of people who
limit us because of the disability, because of the things we have to
explain, demystify all the time and this becomes tiresome. If I acted
the way I feel irritated, they would say the same about me, that is,
that I am nervous because of my disability, “That blind person is
angry”, they would not see me any other way, everything good I did
would end, and they would only see the disability, they would only
pay attention to the detail of what I did wrong, the ignorance, the
nervousness, the rest would end.
Of course, I often feel like reacting without thinking too
much about what to say, like treating them with the same disrespect
with which I feel treated. When I go to buy something in a shop and
the salesperson doesn't address me, I withdraw and get irritated, but
I would like to say that, please address me, I can understand, listen
and speak. When friends meet me in the street and do not say hello,
I get very hurt because I have always said hello to everyone in the
street, people even joke that I should be a councillor (laughs), but my
wish would be to go back and say clearly to the person “Hello, what's
up? You did not see me, but I saw you” or accidentally bump into my
cane and say that I did not see it (laughs).
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When the carpenter prefers to deal with Elis only, I try to
explain that he can talk to me, that he can send the budget on my
WhatsApp, I try to negotiate and convince the person to talk to me,
but it doesn't always work, and the person insists on talking only to
Elis. My desire is to explicitly say “You can talk to me because I
understand, I can understand a damn colour name”. When they are
new names of colours and strange ones, I don't really understand, but
if you tell me what it resembles I can identify it. Nowadays, with the
changes, clothes, for example, they speak names of some pieces that I
didn't know, but it's enough to explain to me what it is.
When they think that all blind people are the same and should
do the same thing, have the same abilities and difficulties, I just
apologise and say that I can't do it, when my real desire is to respond
aggressively to the person. At the beginning of the disability, I could
not put butter on bread. I still couldn't see with my ears and hands,
being blind in all senses. People dragged me wherever and however
they wanted, I couldn't do anything yet. Imagine a cousin you only
saw as a child changing your nappy? Very embarrassing. Especially
me, who didn't even change in front of my sisters. Comparison is
something that annoys me a lot because no person is equal or has the
same abilities as the other, why should the handicapped be? Clara
reads in Braille and my aunt always praised her to me, giving me a
nudge because I couldn't learn Braille. Elisângela, who had been blind
for longer, thought it was absurd that I couldn't spread the butter on
my bread and told my father that it was shameful that I couldn't do
it. Today, I feel like calling her and telling her in a provocative tone
that I can wash clothes and she can't. These situations annoy me. I
feel like saying, “We are not the same, I can't do this!”.
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However, if I acted and responded that way in those situations
and to all the people who compare, label, limit and discriminate, the
focus would not leave the disability, they would sentence that the
attitudes or words are because of my disability and not their
behaviour. So, I prefer doing to talking, in the episode of the girl from
the shop, for example, when I talked to her and chose what I wanted,
at the end of the service I had already added her on Facebook, talked
a lot, and she saw that I am capable. If I fought, she would just think
I was nervous, she would never attend to me again, she would call me
revolted because I am blind or revolted because I am a woman who
has been assaulted. These are things that I have to be aware of because
otherwise I will be called ignorant and nervous. This prejudice always
happens, not only with salespeople, friends, but also with family
members themselves.
I was walking with Elis around the market and I passed the
Camelódromo (large open thrift shops), I have cousins who work
there. I went by my cousin who had her back to me and Elis warned
me. I said, “Hi, Larissa” and she didn't answer. I said she must be
busy, but Elis told me she wasn't doing anything. I passed by my
cousin, who was sitting looking at me and didn't greet me. Because I
am blind, I believe they think “We don't need to greet her because she
can't see”. That is what happens most of the time, and I have nothing
to say to these people. This doesn't just happen to me, but my blind
friends report the same situations, and this for me is a stigma.
I was talking to someone who said,The other day I saw you
at the supermarket”. I asked him why he didn't say hello, and he
replied, “I was busy, I was in a hurry”, it's always the same excuses
even if they pass me by. I don't know if they think my intellect has
been affected or that I have become untouchable… I believe that
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some people do not know how to act in front of all that has happened
to me and the disability, but not all of them, many ignore me out of
pure prejudice. I myself have already had no reaction in face of a
friend who was bedridden and suffering a lot, but they are different
cases, I walk, talk, work and greet them, but they prefer to ignore me.
The curious thing is that soon after the assault, when I was still in
hospital, what I received most were visits from people who wanted to
see what had happened to me, it wasn't out of concern, it was
curiosity, now that I'm well, they don't care anymore.
Avoiding confrontation is a way to escape the stigma…
Avoiding confrontation is a way of escaping stigma. I lost my
sight, but people associate me with other disabilities like intellectual,
deafness, physical, and they assume that I can't talk, so I talk a lot
(laughs). I think there are people who manage to face the stigma on
us in a more direct way, confronting, debating, but I avoid
confrontation most of the time, even though I am angry by nature, I
prefer to swallow it rather than confront it because the consequence
is that people would see me in a different way, as a grumpy and fussy
person, rarely would they notice firmness, conviction or that I was
changing a situation, most would label me as a fussy and angry blind
person.
They wouldn't recognise that I would be demanding my
rights and would just label me ignorant. Although we almost don't
use those rights because it's so difficult to use them, so difficult to get
a ramp, etc. To be able to buy a car, for example, you have to get a
certificate from the doctor, go to the DER (“Departamento de
Estradas de Rodagem” or Department of Highways) and get another
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form to fill in. Besides this form, you have to go to the doctor to get
another one in which you go through a medical board in which all of
them must authorise you to buy because of the disability. This is paid,
it is not simply to go and go through all the bureaucracy, it is
necessary to pay to do this, the value is high, around R$ 700,00.
Some time ago, I got informed and found out that it is necessary to
go to another city because there is no such service in our city. Besides
other numerous requirements to be fulfilled, documents and papers
to be delivered, reports and consultations. My report specifically
needs to be from São Paulo, and it is even more bureaucratic, even
though my disability is visible. It is all so bureaucratic that it seems to
be on purpose so that the person with disability gives up their rights.
Prejudice today encompasses black people, the poor, but the
disabled are the most stigmatised in my opinion, they are already seen
as someone who is incapable and who will generate work for other
people. In my point of view, inclusion should not exist, at school for
example. It should be blind people with their equals, separated, so
that they learn according to their needs, disabled people with disabled
people because we would feel much better and learn much better than
when mixed with people who do not have disabilities and do not
know how to deal with inclusion. There is prejudice from colleagues,
from teachers, unpreparedness.
If parents do not teach their young children to deal with the
disability of others, they will go to school and isolate the disabled
person, they will not call them to play, and who will suffer from this?
Now, if the blind child is in an environment with blind children who
understand them, they will interact, play because they are all the
same. When my blind friends come to my house, there is no
prejudice, and we end up being ourselves, if we drop something on
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the floor, we laugh, accept it and face it naturally. If I do the same
thing, as has happened in the presence of psychics in a restaurant, or
bump into something, everyone looks at me, I feel people looking at
me as if I had done something terrible. I have to be careful and watch
out when I eat, when I cut the food so that I don't fall over, so I ask
Elis to cut the pizza or the meat so that I don't fall over and feel
embarrassed, to avoid the prejudiced look.
If you leave me alone in a UBS (“Unidade Básica de Saúde”
or Basic Health Unit) or in a snack bar, nobody will come to talk to
me, unless it's the waiter asking if I want something. In the past, when
I was waiting to be attended to in a UBS, what I did most of all was
talk to people, I loved to chat. Now… I enter and leave quietly, I am
invisible in certain situations and in others, like when I drop
something, all eyes are on me or when I arrive somewhere and Elis
tells me that everyone is looking at us. I try to take it in a good mood
and say that they think I am pretty and that is why they are looking
at us, but I know that they are looking because I am with a woman,
and I am blind. I have a double stigma.
It's my way of avoiding stigma…
I really don't know if people judge me incapable of doing my
job because of my disability, I don't know because they will never tell
me directly what they think. How can I know that people don't come
to me with the intention of seeing if I will really succeed? That is an
answer I don't have. I believe that it has already happened like those
who came once and didn't come back, maybe they came just out of
curiosity, asking themselves “Can she really do it?”. That's what I
believe in.
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At first, I was intrigued, I thought, “How is a visually impaired
person going to give massages?” I went there, and she told me
that she had already done the course before she lost her sight.
She asked me if I had any specific pain and I answered that I
had fibromyalgia and that all my muscles hurt, I just said that.
The first time I got the massage from her, I was already
0,amazed, I don't know if it was because she couldn't see, she
developed more contact with her hands.
What I admire most about Beatriz as a professional is her
courage. Very brave! I believe she has already suffered
prejudice at work for being blind. She never told me about it,
but I believe she has. When I mention that my masseuse is
visually impaired, people are amazed and ask me, “How?” I
explain that because she is visually impaired, she has developed
a lot of touch, but people doubt it. That is why I say, she is a
very brave person, I admire her very much, as a person and
even more as a professional. She was very intelligent, she
adapted the massage to my case, studying my disease, not even
trained professionals do that, they don't have time to attend
according to the needs of each patient, there is only one
massage for all, even with her lack of vision, she studied and
adapted. Today, she knows all the points of fibromyalgia. But,
people don't believe this (Ivana, Beatriz's client).
I don't think I am visibly or even more stigmatised because of
my behaviour. The fact that I have certain abilities such as looking in
the direction of those who talk to me, walking with agility, among
other things, makes the person end up looking at me in a different
way as if I were really seeing. To this day, Ivana has her doubts that I
can't see anything. I asked for her arm because I couldn't find the
door and she, surprised with my difficulty, answered that I was
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accompanying her so well, talking and looking at her face, that she
even forgot my condition. I think that if I started to see people
without glasses they would be more convinced, they would find it
strange because then they would have something visible that would
prove my disability.
If I took my glasses off during the massage, perhaps people
would treat me with more prejudice, but I wouldn't do that, firstly
because I don't take my glasses off for everyone, I have many friends
who have never seen me without my glasses. I don't take them off
because they would see me the way I am today. I don't want people
to see me the way I am today, I don't like people to see me as disabled,
I like people to see me simply as the Beatriz that I am, with the defects
and qualities, but not as disabled, that's something I don't like. I
don't like the pity, to be pitied, to be told “Oh, such a shame”.
I get frustrated at the thought that if I were without
sunglasses, the person would be looking at me with a look of pity,
fake sympathy, while I would talk naturally without being aware of
that look and without being able to look at them with an air of protest
so that they would not look at me with pity. I don't want that in my
life. I don't want people to look at me with pity because it is not really
necessary. When I see someone on the street in need, I feel sorry for
them, a disabled person lying on the pavement, I feel sorry for them
as a human being, but I am not in that situation, I am not sick,
bedridden or comatose, I do not need pity.
Wearing glasses is a strategy, an escape to protect myself from
pity. I don't go without glasses. Most of my blind friends don't wear
glasses. They are different from me, they don't need to wear them
because their eyes are there, they were not torn out like in my case, it
is another view of a face. I cannot compare myself to these people,
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saying that I am disabled like them, so I will also be without glasses,
I need my own strategies. When I did a course on self make-up for
the blind, they were all without glasses, I didn't let them take photos
of me. All without glasses, learning to apply pencil to the eyes, I can
no longer… I have even one eye and the one that is left only remains
closed. So, I am very careful with photos because I am afraid that
people will put them on the internet because the curiosity is great, I
am careful. I try to go out dressed in my style, the way I like it clean,
tidy, I try. Of course, sometimes it happens like recently, I went to
the psychologist with my clothes dirty with coffee powder (laughs),
that made me angry. But, it's blindness… damn, being blind is a
drug! (laughs).
But I also wear the glasses so that people are not frightened
by my appearance, there's that too, but it is not the main reason. My
strategies to protect myself from the stigma are to wear glasses, to
always be well groomed, to leave the house tidy and clean in order to
receive clients, to have certain expected behaviours such as looking in
the direction of those who speak to me and not to be harsh with words
even in the face of the most absurd questions. Sometimes I think I
worry more about the person than I really should, and this is already
part of my personality even before the disability. I am not overly
careful with myself. But I do care about my appearance, I am more
vain today than I was before the disability. I think it is important
what others see in me.
The stigma will never end…
Yesterday, I was returning from the hairdresser's next to my
aunt's house and walking alone, as it is in the middle of the block. A
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sound truck was passing by, and I was on the pavement, when the car
passed by me, I turned my head and followed it on purpose so that it
would be unclear if I were really blind. But, I bumped into one of my
aunt's trees with those huge branches tangling all over me, and I was
mortified. I got inside, stomping my way in, and told my father to
please cut the tree down (laughs). I wanted to laugh at the man who
was driving, I lifted my head and walked all confident and full of
myself, until I bumped into the tree.
I can see both sides of a situation. I was a person without
disability, independent, agitated, with a normal life. Today, I am a
person with disability, dependent on others in many situations, with
many obstacles in everyday life. I know both sides. There are
situations in which I stop and think how the Beatriz from before
would think. I also had no contact with blind people, I also didn't
know, I was also afraid, so, because I know both sides, I end up
thinking and understanding certain behaviours a little more than a
person who has never seen before in their life.
A person who is blind and has never seen is guided only by
what you tell them as truth. I have memories and many times the
reality is not as we are told, it is different. I know how to distinguish
between the two sides. I see this as something positive, as an
advantage because I can, in certain situations, stop and reflect on how
a person's social behaviour was when I used to see and try to
remember the expressions they made with their face, eyes, and mouth
and try to reproduce them. I imagine that in that context the person
could be rolling their eyes at me in that old-fashioned way or
shrugging their shoulders and I want to reciprocate in the same way.
In the past, I had an easy time with my eyes and I could express what
I wanted or not. Today that is no longer possible, no matter how hard
177
I try, I can put on a frown, the person won't be able to look me in
the eye... first because of the glasses, second because I have only one
eye left for them to look at. So, I still need to learn certain things
because being blind is also learning something different every day.
I am sure that the stigma towards disabled person will never
end. A world without stigma is not possible, it comes from a long
time ago, it is more likely that the world will end, and the stigma will
remain firm and strong (laughs). I don't have that hope. Even if
people evolve in the sense of paying more attention to others, paying
attention to the other human beings, even if this happens, there will
always be those who do not pay attention and who spread stigma.
There will always be the one who doesn't care, who passes me on the
street and runs me over, who feels better than me because he sees.
There will always be something for them to stigmatise. And if the
stigma does not end, it is the people with disabilities who have to
adapt to the world, it is we who have to change, to take away the cane
of a sighted person who blocks our way, to remove the obstacles they
put in our way because the world will not adapt to us!
178
179
Conclusion
The construction of Life History, as already said throughout
the text, is a democratic and emancipatory process because it is a
method that prioritizes listening and respect for the voice of the
research participant. Not understood as a mere object of study, the
participant plays the role of co-author of his story in which, in a
position of equality with the researcher, he constructs, elaborates,
analyses, approves or corrects information, decides how and what of
his story will be published. Especially with the public of people with
disabilities who face stigma and disbelief about their abilities, this
method becomes even more inclusive by highlighting the discourse
of people who have much to say about their lives and society.
In this sense, Beatriz brought important themes for reflection
on her (ex)inclusion in a society which stigmatizes her daily, in a
world which, according to her words, was not made for her, but for
those whose development occurs within the established standards.
Beatriz's speech has an impact, bothers us in the sense of perplexity,
moves us, makes us indignant, brings reflection, and finds space and
acceptance in the Life History method.
Although, in this book in question, her story had the purpose
of exemplifying each instrument necessary for construction, it is
impossible to go through it, to listen to this voice without changing
and wishing that the world becomes by right also Beatriz's and every
person's. Beatriz has a story beyond her blindness and here it has been
told, it is up to the reader to decide how to reflect on this narrative,
180
the role of society and which are its contributions so that other stories
find space to manifest themselves, on how to build other stories of
lives, of struggles, of confrontation. Using this method with all its
seriousness, rigour and scientificality may be a fruitful path for such
intentions.
The path taken in the construction of Beatriz's story brought
delicate moments and obstacles in which the researchers and
participant needed to constantly evaluate, adapt, review agreements
and start again, besides reflecting together on the best way to compose
the life history with the necessary seriousness and dedication. This
demonstrates how complex a method is which, in all its depth,
requires complicity, empathy and sensitivity, without leaving aside
scientific rigour. We hope that this experience may contribute in
some way to those who wish to commit themselves to the exciting
journey of building Life Histories.
181
References
ALVES, A.P.R. O trabalho na promoção do desenvolvimento
humano a partir da percepção da pessoa com deficiência
intelectual. Dissertação de mestrado apresentada ao Programa de
Pós Graduação em Educação Universidade Estadual “Júlio de
Mesquita Filho”- UNESP. Marília, 2018.
AUGRAS, M. Prefácio. In: GLAT, R. Somos iguais a vocês:
depoimentos de mulheres com deficiência mental. Rio de Janeiro:
ED. 7 Letras, 2009.
BOLIVAR, A.; DOMINGO, J. La investigación biográfica y
narrativa em Iberoamérica: Campos de desarrollo y estado actual.
Fórun: Qualitative Social Research. Volumen 7, No. 4, Art. 12,
Septiembre, 2006.
GLAT, R. Somos iguais a vocês: depoimentos de mulheres com
deficiência mental. Rio de Janeiro: 7 Letras, 2009.
GOFFMAN, E. Estigma: notas sobre a manipulação da identidade
deteriorada. Rio de Janeiro: LTC, 2008.
MORIÑA, A. Investigar com histórias de vida: metodologia
biográfico- narrativa. NARCEA, S. A. DE Ediciones, Madrid, 2017.
____________. La experiencia universitária de los estudiantes com
discapacidad a través de sus historias de vida. Editora ANABEL
MORIÑA DÍEZ, 2016.
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____________. Using life history with students with disabilities:
researching with, rather than researching on. Educational Review,
DOI: 10.1080/0013 1911, 2018.
PUJADAS, J.J. El método biográfico y los géneros de la memoria.
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183
Ana Paula Ribeiro Alves
Holds a degree in Pedagogy from Paulista
University-
UNIP (2015). Specialist in
Neuropedagogy
in Education from the
Faculty of Technology of the Ivaí Valley -
FATEC (2015). Master in Education from
the Paulista State University Unesp, in the
city of Marília, São Paulo (2018). Doctor in
Education from the Paulista State University
Unesp, in the
city of Marília, São Paulo
(2022). She participates in the Study and
Research Group on Work, Health and
Disability - Unesp, in the city of Marília, São
Paulo. Currently, she is a teacher at the Assis
Municipal Education Network, São Paulo.
184
Nilson Rogério da Silva
Holds a degree in Occupational Therapy
from the Federal University of São Carlos, a
master's degree in Production Engineering
from the Federal University of São Carlos, a
doctorate in Special Education from the
Federal University of São Carlos. Post-
Doctorate from the School of Medicine of
Ribeirão Preto of the University of São
Paulo - USP. Associate Professor with the
Occupati
onal Therapy Course at Paulista
State University
Unesp, in the city of
Marília, São Paulo. Associate Teacher in
Occupational Therapy in Worker's Health,
works in the areas of Worker's Health and
Professional Rehabilitation in the following
themes: occup
ational therapy, special
education, ergonomics, occupational health,
worker's health and prevention. Teacher of
the Postgraduate Program in Education at
Paulista State University Unesp, in the city
of Marília, São Paulo, Line Special
Education. Coordinates the Research Group
Work, Health and Disability at Paulista State
University Unesp, in the city of Marília,
São Paulo. Participates in the Study and
Research Group on Applied Behavior
Analysis and Social Skills - GEPEACAHS
of the Paulista State University Unesp in
the city of Bauru, São Paulo and Studies in
Occupational Therapy: Occupation, Physi-
cal Rehabilitation, Assistive Technology
and Functionality -
Federal University of
São Carlos - UFSCar.
185
SOBRE O LIVRO
Catalogação
André Sávio Craveiro BuenoCRB 8/8211
Normalização
Taciana G. Oliveira
Diagramação e Capa
Mariana da Rocha Corrêa Silva
Assessoria Técnica
Renato Geraldi
Oficina Universitária Laboratório Editorial
labeditorial.marilia@unesp.br
Formato
16x23cm
Tipologia
Adobe Garamond Pro
How to build a Life History?
What can I use to compose the story?
How to analyse participant narratives?
How to present the reader with the nal
draft of the Life History?
Inspired by the experiences of the author
Anabel Moriña, this book addresses the
main doubts and longings of researchers
who wish to explore the exciting jour-
ney of (re)constructing stories and hi-
ghlighting voices, especially those who
have them silenced by society, through
attentive, sensitive, scientic listening.
With this purpose, the authors tell the
impacting story of Beatriz who, after
suering a brutal assault, is faced with
blindness at 28 years of age. The reader
can follow and be moved by this cons-
truction, get to know the roles played
in which researchers and participants
maintain an attitude of equality, mutu-
al collaboration, respect and proximity,
which makes this method essential for
the explicitness of trajectories of strug-
gles and confrontations.
LIFE HISTORY IN QUALITATIVE RESEARCH:
Alves e Silva
the case of Beatriz
In this book, the reader will become familiar with the step-by-
step method for using the Life History method in qualitative re-
search. In a clear and objective way, the authors expose practical
examples of each instrument that makes up the method and be-
yond, the analysis that best corresponds to this type of collection
and the nal format of the text edited in thesis, dissertation, etc.
Taking into consideration the questions that emerge at the time
of collecting, analysing and writing the life history and noting
the scarcity of literature in the area, this is a guide that brings to-
gether all the stages and mishaps that the future researcher may
encounter in the process.
Programa PROEX/CAPES:
Auxílio Nº 396/2021
Processo Nº 23038.005686/2021-36
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