BECOMING DISABLED

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					                          BECOMING DISABLED:
  SEEING THIS LIFE CHANGING EXPERIENCE AS A DISASTER IN THE COMMUNITY
Alessandra Marques Sohn; Giovanna Pereira Ottoni; Michele Schultz Ramos de Andrade

Universidade de São Paulo

        Introduction


        Talking about disaster seems complicated from the moment one considers the meaning of such a
word.   If it is a priori to make reference to a misfortune, disgrace or fatality, perhaps it is not that
difficulty to apply. But how can one speak of someone else's life? How can one define an event as a
disaster? It does not seem ethical to speak about it without considering the development of the facts.


        The ways in which someone deals with an experience and how it affects their values and attitude
towards life, is primarily only up to the person living the experience.       With this in mind, an interest
developed: Before trying to identify or explain anything it is important to seek proximity and acknowledge
the point of views of the ones who has been asked to speak, to listen to the person/s involved and
hopefully better comprehend how they have lived with that specific moment.


        This essay is committed to the collection of reports from people who have become physically
disabled in order to better comprehend the moment in which they suffered this rupture in the life, how
they lived the experience of becoming disabled and all the changes experienced in their lives. How does
this disaster echo in this person's life within a community, which community should be considered after
this rupture, how is the community is linked to this experience, and is there a community actually linked
to it in the first place? These questions form the base proposed in this present investigation. Deeming
the event of becoming disabled a disaster is not intended, rather it is an investigation into the disruptions
that this conflict can allude to in the life of those who are experiencing them, and if possible illuminate the
feelings linked to this rupture.


        It is believed that before talking about a sustainable community for disabled people, it is
necessary to comprehend how these people live through the experience of becoming disabled and how it
is relevant to them, considering the community concept.         This investigation starts with the first-hand
interviews of disabled people themselves, in other words, it is believed that through interviews with
people with disabilities it is possible to better address their socio-cultural contexts in a way more


  BECOMING DISABLED: SEEING THIS LIFE CHANGING EXPERIENCE AS A DISASTER IN THE COMMUNITY
Corresponding author: SOHN, Alessandra M. (alessandrasohn@usp.br); OTTONI, Giovanna P
(giovanna.ottoni@usp.br), ANDRADE, Michele S R (mschultz@usp.br)                       1
consistent and clear with the realities that entail.


         The aim is to briefly explain the geographic space in which the interviewees are situated,
presenting a cross section of the city of São Paulo, enumerating the difficulties discussed in their
interviews and developing a better comprehension of the socio-cultural context studied. When one speaks
of community and socio-cultural context, one goes beyond the physical geographic space. One also refers
to everything that involves the person, their environment and its implication on them as part of the
community, what affects their lifestyles directly, their behavior, their attitudes and their values. Taking
that as a belief, the way in which the disaster echoes in the life of people who become disabled is
intrinsically linked with the context here considered: the city of São Paulo.


         The city of São Paulo


         In July 2008, the Brazilian government, through Legislative Decree number 186, approved with
the Human Rights of People with Disabilities Convention. Supported by law, the rights of disabled people
should be assured. However, to a large degree, the execution of these rights is still to be upheld.


         According to IBGE (Brazilian Institute of Geography and Statistics), the information collected in
the 2000 Census indicates that within the city of São Paulo there are around one million people in need of
effective public policies (people with disabilities and people with incapacity perception). The city of São
Paulo has relevance in this matter, as it is a megalopolis of international proportion, contributing to the
development of technology, organization of events and other factors that place São Paulo as an attracting
city. With this in mind, the city takes on the role of leadership in the implementation of large projects;
bringing about an awareness of concerns with attempts to resolve problems.




         Compared to other Brazilian cities, the city of São Paulo has a wide support structure. The local
bus company offers two adapted buses, for people with disabilities, per route. This corresponds to more
than 70% of the buses in the whole country with disabled access. However, the average waiting time of a
person with a disability is far greater than that of a person without a disability. Even with this number of
adapted buses, it is far from sufficient when considering that the mobile potential of many people with
disabilities   that    are    still   restrict   to    one   single    space:   their   homes.        Website:
http://portal.prefeitura.sp.gov.br/secretarias/deficiencia_mobilidade_reduzida/programas/0029, visited in
August 2009)




         A Portrait of global paradigms relating to disabilities


         It is noticeable, now on a more global scale, that some of the paradigms that guide the social


  BECOMING DISABLED: SEEING THIS LIFE CHANGING EXPERIENCE AS A DISASTER IN THE COMMUNITY
Corresponding author: SOHN, Alessandra M. (alessandrasohn@usp.br); OTTONI, Giovanna P
(giovanna.ottoni@usp.br), ANDRADE, Michele S R (mschultz@usp.br)                       2
relation of the community with people with any kind of disability succeeded until the "proclamation" (more
present today) of the word "inclusion".      Before "include" it was common to use "insert" and "de-
institutionalize", before that even "institutionalize".   Predominantly, people with disability were fully
confined to institutions, without any kind of treatment. It was believed that they would be more secure
because they were incapable of living in the community.       "Insert", as a paradigm, meant to take the
person with disability out of the institution they were and allocate them to live within a community. In
this case the community was the main promoter of the disabled person's necessities, seeing the disabled
as incapable of self-sustainability, living with autonomy and independence. (ARANHA, M.S.F. Paradigms
da Relação da Sociedade com as Pessoas com Deficiência. Revista do Ministério Público do Trabalho, ano
XI, nº21, março, 2001, PP. 160-173.)


         After the Second World War a problematic scenario involving people with disabilities was again
created: Many people, returning from the war, would bring back the tell-tale marks on their bodies and
physical alterations such as amputations. They were heroes, but now disabled. What appeared then in
this context, was a term that is today hackneyed: The word, “inclusion”.         Including a person with a
disability was part of a speech that contained the differential point of affirming that a person with a
disability could contribute in community relations and not only obtain from the community the basic
attention they need to survive. Including, with a bilateral adaption in the relation 'community and person
with disability'.


         As paradigms changed so did relations, and it was possible to resignify the disability itself.    In
other words, a disability exists in a social context and it is a process constructed by and through social
relations.   A disability is not only a limiting condition in which there is something missing in order to
develop oneself, but it is a limiting physical condition, although, putting into consideration the disabled
person wishes and life projects, their physical condition might not necessarily mean limiting.            "No
individual difference can be considered disability by itself. It is the social group around the person with
disability that, parting from specific criteria and standard, elect certain characteristics or limitations as
endowed with a disadvantage character." (Cordeiro, M.P.CORDEIRO, M.P; [et al].          Diferença e Teatro:
arte e conscientização. Psicol. cienc. prof. v.27 n.1 Brasília mar. 2007). As someone's characteristics,
the disability needs to be identified, noticed, recognized.     What comes after opens a space for the
question: "How does this person relate within society?"


         Studying a disability thoroughly is important as this contributes to the understanding of the
processes linked to the person's physical health, for example. Furthermore, the biggest contribution is
providing the community and its citizens with the means to approach that person. The challenge is to be
willing to know the difference without determining damage, incapacity, and loss of what one could call
quality of life in a sustainable community. It is important to try together to uphold the rights of a person
with a disability and help to them reach their goals and develop as a person without limiting stigmas such
as feeling of pity, doubting the person's actual potential and burden the person with suffering without


  BECOMING DISABLED: SEEING THIS LIFE CHANGING EXPERIENCE AS A DISASTER IN THE COMMUNITY
Corresponding author: SOHN, Alessandra M. (alessandrasohn@usp.br); OTTONI, Giovanna P
(giovanna.ottoni@usp.br), ANDRADE, Michele S R (mschultz@usp.br)                       3
questioning how they actually feel.


         By considering the proposed scenario and the presentation of the context that portrays the
present thematic, one can start to analyze the interviews, seeking to direct focus on the person to which
the analysis refers.   The most fundamental issue is then achieved:              Giving voice to the actor of the
problematic that has been explored in this essay. It is more than just questions, useful information, a
history of the global panorama on the subject, a brief explanation of what is shown to society, one gets to
the origin, the initial point that gave rise to the entire route taken so far.


         How do people live with the moment they become disabled? How does this individual experience
reflect on the community in which people with disability are inserted? How does the community respond
to this change of lifestyle?    These questions appear at a later stage, with stories at hand, emerging
through the interviews and guiding and directing the analysis.




         Method


         The methodology for the present work is one of phenomenological inspiration in order to seek and
comprehend how the phenomenon of becoming disabled is processed by the person/s involved.
Qualitative and delineated methods were used to address the disaster.                 Semi-structured, open and
individual interviews were applied, with two guiding questions:          "How was the moment you became
disabled?" and "If you could change anything in your community, what that would be?” The questions
were proposed as the interview's conducting line, aiming to access the experience of becoming disabled
so as to comprehend it with all its developments on the person's life - the objective of this article.
According to the interviewee’s initial answers, subsequent questions were asked, returning to the
important aspects of the discussion and further exploring significant points of the story so as to clarify
them. The intention was to elucidate the presented phenomenon as a disaster for better comprehension
considering the way it was being reveled in the interviews.


         The first criterion in choosing the interviewees was that they should have acquired a disability.
We needed people who presented this condition, showed interest in participating in the work and were
happy to talk about the proposed subject matter freely. After the meeting with the first person, two other
contacts were acquired and contacted soon after.         The three interviewees had a common profile: they
were colleagues; professional adapted basketball players and had done their rehabilitation in the same
place.


Interviewees:


         Subject 1: 34 years old, male, basketball player for 16 years.


  BECOMING DISABLED: SEEING THIS LIFE CHANGING EXPERIENCE AS A DISASTER IN THE COMMUNITY
Corresponding author: SOHN, Alessandra M. (alessandrasohn@usp.br); OTTONI, Giovanna P
(giovanna.ottoni@usp.br), ANDRADE, Michele S R (mschultz@usp.br)                       4
        He was hit by a stray bullet and became paraplegic 18 years ago with a low lesion.


        Subject 2: 15 years old, male, basketball player for a year.
        He was run over by a car two years ago, having two legs amputated above the knees.


        Subject 3: approximately 50 years old, male, basketball player for around 15 years.
        Became paraplegic 20 years ago, with high lesion, also hit by a stray bullet


        The interviews were recorded in audio and fully transcribed.          After the transcription, the
interviews were analyzed within the phenomenological perspective.          Relevant common points were
observed and were revealed in the results as categories. It is important to stress that at the beginning of
each interview the objective of the research was explained, informing the interviewee of the audio
recording. All the interviewees signed a form of free informed consent.




        Results


        We became aware of the existence of different categories representing the common points that
emerged in the all of the interviews. However, each category doesn’t represent separate and independent
themes, but on the contrary are displayed in a way that reflects the order in which events unfolded and
stories were told. The aim of elucidating these categories could only be comprehended after considering
the intention of articulating them as a whole. Certain temporality when elaborating those categories is
also highlighted, in other words, the outcome of the process of what was initially taken as a disaster,
becoming disabled, is considered in the same way as it is showed in the interviews.




        Complete Dependence on the Other


        This category appears in the interviews in a constant and significant way. The sudden passage
from autonomy in performing daily activities, considered normal until transformed in a moment to
complete dependence on others immediately after the accident.          It seems striking, according to the
interviews, and reveals the difficulties of that present moment.


                             “Then you want to go to the toilet and cannot manage because your house
                      has not been adapted yet, you have never been. You can shower by yourself and
                      then you cannot, you have to ask your sister to carry you there. You want to do a
                      lot of things that you were able to before and now you cannot.” (Subject 1)


                         “...dependence is a horrible thing. If someone could choose, "Ah! I will never


  BECOMING DISABLED: SEEING THIS LIFE CHANGING EXPERIENCE AS A DISASTER IN THE COMMUNITY
Corresponding author: SOHN, Alessandra M. (alessandrasohn@usp.br); OTTONI, Giovanna P
(giovanna.ottoni@usp.br), ANDRADE, Michele S R (mschultz@usp.br)                       5
                        depend on anybody! I will never depend!" If we could, wouldn't we? If only we
                        could!   We always depend on others.” (Subject 3)


                           “... I never liked depending on other people... I would go and shower and had
                        to call my brother, my parents; to go down the stairs, I had to call them as well.
                        Then I said to myself: “Man! That is not right!” (Subject 2)




          It is possible to notice how this loss of independence in everyday activities unfolds in a state of
discouragement and closing. The person with a disability finds themselves with difficulties of motion in
carrying out daily activities that were once seen as banal. All that seems to jeopardize or even prevent
their relation with the world from happening.




                           “Then, I didn't accept at the time. It was complicated... I had family, friends. I
                        didn’t want to see anyone, you know? I wouldn't leave home. I lost my job. I lost
                        my job because the company I worked for didn't have wheelchair access and I had
                        to do six months of physiotherapy; then I had to leave my job...        I lost many
                        things, I had depression...” (Subject 1)




          The Pitying Look from People Around


          Another significant moment in the interviews was the confession of the interviewees regarding
heartbreak, or a revolt against compassion and the pitying looks from others be it family, friends or
community. This point could contain the objectivity towards the condition of disability, returning then to
the initial discussion about the disastrous vision on the condition.    It is observed clearly how a person
becomes a target of this objectivity. It is as if their physical condition represents the sole determinant of
their state of being, rendering the disabled becomes despicable and irrelevant in their position as a
person.


          “We feel really bad when someone pities us. (...) To feel pity, I think that makes things worse.
"Ah! Poor you!" It is better to try to make us feel better. Because pity... it is over. Your life is over...
to feel pity for you... We know that so many things are possible. (...) (Subject 3)




          The Rehabilitation Experience




  BECOMING DISABLED: SEEING THIS LIFE CHANGING EXPERIENCE AS A DISASTER IN THE COMMUNITY
Corresponding author: SOHN, Alessandra M. (alessandrasohn@usp.br); OTTONI, Giovanna P
(giovanna.ottoni@usp.br), ANDRADE, Michele S R (mschultz@usp.br)                       6
        In the city of São Paulo there are rehabilitation services in many centers of reference, such as the
Association for Assistance of Children with Disabilities (AACD) and the Division of Rehabilitation Medicine,
General Hospital, School of Medicine at University of São Paulo (IMREA/HC/FMUSP), amongst others.
These important rehabilitation centers help people with disabilities in two ways: By teaching people with
disabilities how to perform daily activities like taking a shower, brushing teeth, getting dressed and how to
adapt their homes and the spaces around them.                 By providing meetings with other people with
disabilities, providing the opportunity to see oneself in the someone else close to you, also disabled in so
doing facilitating a meeting that generates knowledge and the restructuring of personal value.


                              “...at DMR they guide us on everything, don't they? At DMR, there is the
                         infirmary, where they teach you everything!       (...) at the time there were a few
                         courses for us... there was a carpentry workshop... I would stay there. After the
                         rehabilitation program was over, I would stay there so I didn't have to go home!
                         There was the basketball, wasn't there? You would see the guys there...” (Subject
                         3)


                              *DMR: Division of Rehabilitation Medicine


        All the interviewees were treated in this specialized rehabilitation centre for people who have
acquired disabilities.   The gradual recovery of a lost autonomy is identified with great relevance for a
person with a disability, especially when one thinks about a return to the community, and their roles as its
members, considering first the people closer to them: the family.




                              “...   Then, in this process, my family went through two different phases.   The
                         pitying phase, you know.       They would accept me, but would help me too much.
                         This would annoy me...       everything being done by someone else, like food, you
                         know? They did everything for me. This would irritate me a lot. After I started
                         doing physiotherapy they realized I was more independent.         Then they left me
                         alone...      accepted my anxieties, my crying, my fighting and kept themselves to
                         themselves.” (Subject 1)


        The search for capabilities that can be performed with a disability clearly shows a delicate period
of personal confrontation, to realize how this training could give them the means to carry on with their
lives, to reestablish a “normal life” (this term was used by one of the interviewee and will appear in more
detail later.) At this point the incapacity could be assumed, a limitation of the body to perform certain
actions, but that happens alongside the discovery of the potential of this new body.


                              “And I started to accept myself!     When I started practicing basketball in the


  BECOMING DISABLED: SEEING THIS LIFE CHANGING EXPERIENCE AS A DISASTER IN THE COMMUNITY
Corresponding author: SOHN, Alessandra M. (alessandrasohn@usp.br); OTTONI, Giovanna P
(giovanna.ottoni@usp.br), ANDRADE, Michele S R (mschultz@usp.br)                       7
                       rehabilitation program to try to have a normal life again. Because we go through
                       the process of becoming disabled and then you have to learn how to brush your
                       teeth by yourself, take a shower, get dressed, all that after being 16 years old.”
                       (Subject 1)


                          “Do I have difficulties?   Yes, I do!   But we also can learn how to live with a
                       problem. I catch the train, came all the way from Guianese’s. There are people
                       from Mogi, from all over.     And I am among these people!          It is crazy...   I carry
                       people on me... It is crazy but I make it!    It is not too easy, but it is worse to stay
                       at home...    Worse is to do nothing!        I am fine!     (...)    It is possible to be
                       independent! (Subject 3)




          Meeting with the Similar


          It is possible to highlight the importance of contact with others who find themselves in similar
situations. The interviews show how the contact with other disabled people is fundamental in the process
of accepting the new (“to be disabled”) and then redeems the disaster and assists in the resumption of
daily life.


                          “I started accept myself from the moment I met different people; worse cases
                       than mine, others better than mine, than the disability that I had. Then I realized
                       that it wasn't only me; I was among millions of people with disabilities. I either
                       accepted myself or turned myself in.” (Subject 1)


          At this point a new idea of community appears as the previous dimensions of this concept no
longer prevail; the dimensions seem to be abandoned so the reconstruction of a nurturing environment,
where the possibility of people with disabilities finding themselves again and living these encounters,
happens freely.    The identification with the other becomes fundamental in the acceptance process; not
only towards oneself, but also the people, such as close family and the community, around them.


                          “When I come to the training, I feel so happy, more energetic than when I am at
                       home. At home it seems that I am not as happy as when I am at the basketball
                       practice. Because here I know I am with a bunch of friends that don't have the
                       same problems as mine, but that are disabled. Then I relax.”




          Autonomy Gained through Sports



  BECOMING DISABLED: SEEING THIS LIFE CHANGING EXPERIENCE AS A DISASTER IN THE COMMUNITY
Corresponding author: SOHN, Alessandra M. (alessandrasohn@usp.br); OTTONI, Giovanna P
(giovanna.ottoni@usp.br), ANDRADE, Michele S R (mschultz@usp.br)                       8
        As the rehabilitation process progresses, the disabled person starts to rediscover autonomy,
finding their place in this new world created after the accident.       A new life objective is established,
redefining it. In the interviewee’s cases basketball reconstructs the projects on their life horizons, now
incorporated in the presence of a disability.


                          “I got the chair and found out that it was lighter than when I became disabled, a
                       basketball chair.    I liked it!   I haven't stopped since.    I left everything else:
                       infirmary, psychology, and physiotherapy.       I just wanted to play basketball.     I
                       didn't even want to walk anymore; I just wanted to play basketball.” (Subject 1)


                          “I started going out by myself because of the basketball, of the independence I
                       got from it. You have strength in your arms. And you realize that, as I told you,
                       buses aren't necessary.     The bus doesn't come here, so I go in my wheelchair!
                       (Subject 1)


        The role of basketball seems to go beyond the benefits of physical improvement by means of a
wheelchair. The sport brings centralization back to the body allowing the person with the disability to see
themselves back in a condition of normality, in the equality in the pursuit of overcoming the accident, in
the training of capabilities and abilities and in a framework that includes winning and loosing.




        The Acceptance of the Self


        In the case of the interviewees, one of the consequence of this process of gaining autonomy,
propitiated by rehabilitation and sports, specifically basketball, is that the person with the disability shows
acceptance of oneself even facing this new condition:


                          “Because with a wheelchair I new I could go anywhere, because I had my arms
                       to touch it.    So if I had to walk one kilometer I would go by my arms, there
                       wouldn’t be anyone pulling me.      So I could go anywhere that I wanted with my
                       arms. Would I get tired? Yes, I would, but I would go by myself. Then (...) there
                       would be a party and she said: " ...Lets go to a party? Wedding?” I said: "Lets go,
                       mum!" But then she said: "You aren't going in that wheelchair, are you?” I said: "I
                       will go if I go in the wheelchair." She said: "But put on the apparatus so you can
                       stand!" I said: "Mum, I don't feel well using that apparatus because it takes me an
                       hour to walk 100 meters. And the clothes that I want to wear won't go well with
                       this huge boot. I will feel strange." So I preferred to go by wheelchair. She said:
                       "Ok, then!     So you are going!" From that moment she accepted me, I accepted
                       myself. (Subject 1)


  BECOMING DISABLED: SEEING THIS LIFE CHANGING EXPERIENCE AS A DISASTER IN THE COMMUNITY
Corresponding author: SOHN, Alessandra M. (alessandrasohn@usp.br); OTTONI, Giovanna P
(giovanna.ottoni@usp.br), ANDRADE, Michele S R (mschultz@usp.br)                       9
        At this point a personal strengthening surrounding their own condition and the limitations that
come with it were identified in the interviews. The initial fragility in reaction to “the pitying look” is over:
there is no longer that emotional vulnerability that exists during the period just after the disaster.
However, this does not mean that there is no annoyance with certain behaviors that still present
themselves, but there is a reconstruction in the sense of self-meaning and of their lives.




        The Acquisition of Space of Freedom within Society


        A reunion with the community is only possible when there is self-acceptance, when it is possible
to recognize one’s own space, which is the place that one occupies in a society and the roles played in the
society by the person.


        To be capable of performing activities without the help of others was a desire present in all of the
interviews. This achievement would allow them to exercise of their free will and dignity. In a macrocosm,
the importance of ensuring full accessibility to all it’s citizens, reflects the duty of the State:


                            “...   the day I won...   was the day I manage to take the subway myself! By
                         myself in inverted commas!        With no one from my family!         Without someone
                         pulling me! I fell to go in and to go out... but strangers helped me!” (Subject 3)


        As said before, becoming disabled carries with itself a personal conflict of acceptance that takes
on different proportions and forms relating to both the physical environment and relationships with people
around them.     What could affect work relationship, studies, and what difficulties could be totally or
partially avoided.


                         “I lost my job.     I lost the job because there wasn't wheelchair access in the
                         company, and I had to do six months of physiotherapy; so I had to leave my job...”
                         (Subject 1)


        If the will is to have a normal life, what does a normal life mean?


                         “...if the city was adapted. (…) wow, I will go out and I know that there will be 10
                         buses, and that the one that passes I can get in because I know it is adapted; I know
                         I can go to a restaurant, the theater, to the shopping mall, and I will find adapted
                         toilets, I will have everything adapted to myself” This is to have a normal life.”


        From these interviews it becomes clear that the experience of these disabled people is


  BECOMING DISABLED: SEEING THIS LIFE CHANGING EXPERIENCE AS A DISASTER IN THE COMMUNITY
Corresponding author: SOHN, Alessandra M. (alessandrasohn@usp.br); OTTONI, Giovanna P
(giovanna.ottoni@usp.br), ANDRADE, Michele S R (mschultz@usp.br)                       10
fundamentally linked to their social-cultural context. Speaking about sustainable community, focusing on
comprehending the experience of becoming disabled and the disaster itself, allows for a more consolidated
reconstruction considering that after the disaster the disabled person's concept of community is altered.
This then requires the knowledge of the ramifications of the disaster so it is possible to think, and at a
second stage, reconstruct it.




        Discussion and conclusion


        Considering the results presented in this essay, a discussion regarding the disaster, which is
becoming disabled, is raised in the context of its relation with the socio-cultural space chosen; the city of
São Paulo. It is believed that from this discussion, having the data at hand, it is possible to devise a way
of reconstructing a sustainable community for the disabled.         However it in not intended to suggest
solutions for the difficulties illuminated, but to bring about the first fundamental steps towards this task.
Therefore, in order to find a tangible solution, full comprehension of the presented sufferings, conquests,
values and difficulties as a person living in a community is paramount; from the simplest to the most
complex, from the urgent to those seen as secondary by the community.


                         “Well, it would be great if people...     respected more, right?   In general.   Not
                      because I am in a wheelchair. You don't have to feel pity for me... the blind, the
                      person using a crutch, right? Just respect. To realize that the person, sometimes,
                      has a little bit more difficulty. That is it”. (Subject 3)


        It is through this new perspective that the responsibility of each of us is revealed.      From this
knowledge compromises between one another are humanly established, facilitating the reconstruction of a
sustainable community.


                         “… I think that people should see the disabled in a different way. Not with a
                      pitying look. (…) But I think that first of all one has to have a different mentality.”
                      (Subject 1)


        It is possible through the steps taken in this work to understand the ramifications of the events
from the microcosm (the individual experience itself) to the macrocosm (the community and government
that affect the individual). In this chain there is a link that holds an intermediate and important position,
the family.


                         “Then after they (family) realized, I also did, that I could have a normal life,
                      could drive, could go back to my studies, work, they started to accept me and



  BECOMING DISABLED: SEEING THIS LIFE CHANGING EXPERIENCE AS A DISASTER IN THE COMMUNITY
Corresponding author: SOHN, Alessandra M. (alessandrasohn@usp.br); OTTONI, Giovanna P
(giovanna.ottoni@usp.br), ANDRADE, Michele S R (mschultz@usp.br)                       11
                       today they see me in a different way, the one who went after his objectives.”
                       (Subject 1)


                          “Slowly, I alone discovered myself. That it is not possible to walk anymore. In
                       the beginning, it is difficult… …we suffer a lot. But it is like that for everyone...
                       the family suffers a lot... (…) It was difficult! My youngest son was very rebellious;
                       at the time he was in his primary year... My God! He started misbehaving a lot!
                       Someone heard, I heard him saying: “Ah!          I would like to have another dad!”
                       Right? I heard! He was three and a half years... But... it hurts, of course it hurts.
                       But it is part of the process. It is over now.”. (Subject 3)




        Even long after the moment that a person became disabled, it is possible to find remnants of the
changes that this specific moment required in their lives. Thinking of the macrocosm mentioned above,
within these traces the difficulties of having their rights as citizens executed (the right of access) are
highlighted. Locomotion remains limited even after the initial gain of autonomy and independence from
those closest to the individual. What are left are the conditions that the community offers in this process
and when considering São Paulo, it is still very poor.


                          “Because not everywhere has a ramp. There are places where the pavement is
                       higher than others, others lower; this leaves us...            because we can't climb
                       everywhere.” (Subject 2)


        In this sense, to talk of sustainable community seems compromising. The role of governmental
policies is crucial in the reconstruction of a sustainable community. For this reason, it is relevant to listen
to the person with a disability, in all consequences of a disaster. In the interviews there are moments
suggesting improvements for the situation: things to be considered in this reconstruction:


                          “You don't have to pay the bus fare because you are disabled. I think it should
                       be the opposite. They give you the access and you go there and pay normally. Do
                       you understand? It is more dignified, understand? I don't want any privileges for
                       myself!    I want to pass though a turnstile just like everyone else, but with the
                       access so I get in the bus with my wheelchair.” (Subject 1)


                          “…nowadays, everything that is done, what people will do, involving trade,
                       everything, has to be focused, not adapted, but already related to the access of a
                       disabled person. (…) They built a snack bar and then the built a small ramp. No!
                       Why don't they do a snack bar with many ramps? Because if I can climb a ramp a
                       person who walks climbs even easier.” (Subject 1)


  BECOMING DISABLED: SEEING THIS LIFE CHANGING EXPERIENCE AS A DISASTER IN THE COMMUNITY
Corresponding author: SOHN, Alessandra M. (alessandrasohn@usp.br); OTTONI, Giovanna P
(giovanna.ottoni@usp.br), ANDRADE, Michele S R (mschultz@usp.br)                       12
        Also, the subjects demonstrated great appreciation for the public policies and benefits granted
that play a positive role in these people’s lives and consequently in the community they live in.


                            “Thank God I survive on the sport!         Because there is a benefit from the
                         government, and we also have sponsorship too, so in the end we can combine this
                         business well.” (Subject 1)


        In order to make the Convention of the Rights of the Persons with Disability as effective and
positive as possible in everyday life, within the context of the city São Paulo and hopefully extending
throughout Brazil, it is necessary to remedy the lack of accessibility. This speech does not seem new and
for this reason the reflection here proposed goes much further.          The importance of consolidating the
relation between the person with disability and higher government instances is undeniable, however, one
can not forget, when talking about sustainable community, that it is necessary to refer to the community
as a whole, and, this way, to what each involved person is able to do so the community becomes, in fact,
sustainable.


        The role that the government plays is enormous, but it is not the only role that needs a
participant.     Accordingly, it is believed that what this article brings to light is the possibility for each
person to reflect on their contribution in the space in which they live and if necessary returning to the
microcosm, the individual experience.        The comprehension of the process initiated from the disaster,
during and after it, is extremely important for this task. In other words, the absence of ramps in the
community public places is a State responsibility but does not justify the apathy of people in the
community that fail to ask the question: “How can I help you?”          Accessing these interviews, as it was
done for the composition of this essay, should be imitative of every person in the community, not only
living in the community as a physical space but also living as a community.           This recovers what the
etymology of the word community represents; “with unit” between people that form a space to live and
live together.


        When there is knowledge of the hardships caused by this disaster present in a community, it is
possible to consider the creation of an opening to the other in order to comprehend and thereafter help to
ease the difficulties. It goes through the State’s public policies, but before that, it is in the hands of each
individual who are around people with disabilities. To blame the lack of government action seems easy
and to justify the disaster because of the lack of government response is simple as it frees each individual
from the responsibility as part of a community of people who related to each other in order to construct a
more humane society.        With this prospect it is possible to talk about sustainable community and it is
around this intention that this article bases itself.




  BECOMING DISABLED: SEEING THIS LIFE CHANGING EXPERIENCE AS A DISASTER IN THE COMMUNITY
Corresponding author: SOHN, Alessandra M. (alessandrasohn@usp.br); OTTONI, Giovanna P
(giovanna.ottoni@usp.br), ANDRADE, Michele S R (mschultz@usp.br)                       13
          One of the conclusions reached through the interviews was that it is extremely important to
reinforce the role of the State in the reconstruction of a sustainable community.         However, it was also
noticeable that the disaster experienced by the person, the family and the community reaches the State
and achieves even greater proportions, what was clear when the global paradigms of disability were
addressed.     In this context, the actual scene of inclusion can still be questioned, especially when
considering the point of coexistence between inclusion and exclusion. Obviously, it is only possible to talk
about inclusion if there is exclusion: Do the disabled feel excluded in order to talk about inclusion? A new
ethical question to be considered another time, which this article can briefly clarify.


          Finally, it is observed that the reconstruction of a sustainable community is not an easy task for a
few determined people and State organizations, national or international. It is a joint task for all that
constitute and enjoy the space that makes a closer interaction with a person with a disability possible,
giving this person a voice and space to act and contribute towards the construction of such a community.
This article shows the strong link that exists between these community players.              It is possible to
comprehend the complexity of the disaster of becoming disabled, and realize how this comprehension can
propitiate proximity and access to the other, so that a fundamental bond is constructed/reconstructed,
creating a strong foundation that is able to sustain itself.



       References


ALES BELLO, A. Introdução à Fenomenologia. (M. Mahfoud e J. T. Garcia, Trads.). Bauru: Edusc, 2006


ARANHA, M.S.F. Paradigmas da Relação da Sociedade com as Pessoas com Deficiência. Revista do
Ministério Público do Trabalho, ano XI, nº21, março, 2001, PP. 160-173.


de CASTRO, E.M. Atividade Física Adaptada. Ribeirão Preto: Tecmedd, 2005. (pp 77- 159; 257-311)


PEAT, M. Attitudes and acess: advancing the Rights of People with disabilities. Canadian Medical
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KIDDER, L.H. Métodos de Pesquisa nas Relações Sociais. São Paulo: EDU, 1987 (volume II). Cap 8
(Questionários e entrevistas; pp 15-48) *Leonard Losciuto


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NERI, M; [et al]. Retratos da Deficiência no Brasil. Rio de Janeiro: FGV/IBRE, CPS, 2003.


  BECOMING DISABLED: SEEING THIS LIFE CHANGING EXPERIENCE AS A DISASTER IN THE COMMUNITY
Corresponding author: SOHN, Alessandra M. (alessandrasohn@usp.br); OTTONI, Giovanna P
(giovanna.ottoni@usp.br), ANDRADE, Michele S R (mschultz@usp.br)                       14
KOCH, T. Disability and Difference: Balancing Social and Physical constructions. J. Med. Ethics; 2001;
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CORDEIRO, M.P; [et al]. Diferença e Teatro: arte e conscientização. Psicol. cienc. prof.
v.27 n.1 Brasília mar. 2007


Website:http://portal.prefeitura.sp.gov.br/secretarias/deficiencia_mobilidade_reduzida/programas/0029
visited in august 2009




  BECOMING DISABLED: SEEING THIS LIFE CHANGING EXPERIENCE AS A DISASTER IN THE COMMUNITY
Corresponding author: SOHN, Alessandra M. (alessandrasohn@usp.br); OTTONI, Giovanna P
(giovanna.ottoni@usp.br), ANDRADE, Michele S R (mschultz@usp.br)                       15

				
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