Alex Garcia – a deaf-blind educator for inclusion and dialogue
By Milena Rampoldi, ProMosaik. In the following my
interview with Alex Garcia, a deafbllind person from Brazil. As you already
know, ProMosaik supports the inclusion of people with disabilities in society
because they are an enrichment for the so called “normal” people who can learn
so much from them. Here you can find the profile of Alex Garcia to get an
idea about him. Alex
tries to share and or disseminate the
job he performs for what concerns inclusion. He won the Prize Brazil More
Inclusion in 2016.
interview with Alex Garcia, a deafbllind person from Brazil. As you already
know, ProMosaik supports the inclusion of people with disabilities in society
because they are an enrichment for the so called “normal” people who can learn
so much from them. Here you can find the profile of Alex Garcia to get an
idea about him. Alex
tries to share and or disseminate the
job he performs for what concerns inclusion. He won the Prize Brazil More
Inclusion in 2016.
Alex is an educator for disabled people. And this
is an important point for me. Since I am convinced that disabled people are
themselves the best ones who can educate others and promote their
self-consciencess.
is an important point for me. Since I am convinced that disabled people are
themselves the best ones who can educate others and promote their
self-consciencess.
I asked Alex a couple of questions about
himself as person with disabilities, and about how to live a positive life. And
a positive life for me means inclusion and dialogue. And I also think that as
journalists we have the important obligation to help people with disabilities
to express themselves and to teach us life in the media.
himself as person with disabilities, and about how to live a positive life. And
a positive life for me means inclusion and dialogue. And I also think that as
journalists we have the important obligation to help people with disabilities
to express themselves and to teach us life in the media.
How did you make of your “problem” a “positive potential”?
Keeping the faith and the unshakeable
positions. I always had and still have a position that my fulfillment and
positive state are in “being different” and not a “supposed and false”
equality. The society must be alert to that. It is impossible in the
human scenario, to be equal. All of us are, now, different and so we will
always be. Each one of us must love and respect our similar. We must be honest,
have high standard of moral and ethics, but everything inserted in our “being
different”. I always say: “I have learned to be strong so that no one defeats
me and I have learned to be myself so no one forgets me”.
positions. I always had and still have a position that my fulfillment and
positive state are in “being different” and not a “supposed and false”
equality. The society must be alert to that. It is impossible in the
human scenario, to be equal. All of us are, now, different and so we will
always be. Each one of us must love and respect our similar. We must be honest,
have high standard of moral and ethics, but everything inserted in our “being
different”. I always say: “I have learned to be strong so that no one defeats
me and I have learned to be myself so no one forgets me”.
What can people with disabilities learn from you?
They can learn through keeping their positions
unwavering. I believe this would be the biggest axiom that I can teach and pass
on.
Being a deafblind person, experiencing all the
communication barriers, it is crucial to keep my positions. The communicative
barriers constantly put the deafblind people in the center of the hurricane.
Being in this place, the “winds” and the “interests” are
strong. In this gale, we the deafblind people, are in an enormous
disadvantage-fragility . It is at this moment that we must have a strong
position to refrain the “gale” and above all, to refrain the
seductive invitations that the agents of manipulation constantly offer. Keeping
my positions, for sure, will give me more consistency to a new learning as in
“My steps for development” – www.agapasm.com.br/english_34.asp.
When I was 14, I read Helen Keller and was so impressed, that all my
life I have tried to show people that disabled people have one and the same
dignity as all the others have. Do you think writing can help to struggle
against discrimination?
life I have tried to show people that disabled people have one and the same
dignity as all the others have. Do you think writing can help to struggle
against discrimination?
You are right! Helen Keller was and continues to be
the greatest example of a human being’s overcoming concerning her condition. Keller was
a defblind person, just like me and thousands all over the world. Keller made
writing a powerful tool and so have I. Yes, I believe that words and writing
have an infinite power of social transformation. Sometimes we think words and
writing are slow or that they seem to have no effect. Yes, it is true for the
“impatient” ones, but for the “unshakeable faith” ones
words and writing will seed and aupport hopes.
the greatest example of a human being’s overcoming concerning her condition. Keller was
a defblind person, just like me and thousands all over the world. Keller made
writing a powerful tool and so have I. Yes, I believe that words and writing
have an infinite power of social transformation. Sometimes we think words and
writing are slow or that they seem to have no effect. Yes, it is true for the
“impatient” ones, but for the “unshakeable faith” ones
words and writing will seed and aupport hopes.
For me personally, a society is not tolerant and democratic if it does
not include disabled people. What does real inclusion mean to you?
not include disabled people. What does real inclusion mean to you?
Exactly! Society is not tolerant and democratic
because it is still far – far away – in issues regarding the inclusion of
people with disabilities. Real inclusion for me means: Respected rights and
duties that we must respect, primarily in the individual field, and then, in
addition to inclusive individualities, the collective inclusion arises. It is
in this sense that for me the world is turning to collapse. Society reversed
the process. Today there is much talk about groups and collective as if these
spheres were made of “ghosts”. What is a group or collective that
does not know their rights and duties (submissive individuals)? It is a
subordinate group or collective. And what is a group or collective that knows
its rights and duties (individual active)? It is an independent group or
collective.
How do you struggle for disabled people’s rights?
Keeping the mind politicized to question the
surrounding reality. Writing and publishing reflections on these questions.
Developing lectures and participating in national and international congresses
on subjects of daily life of people with disabilities in general, and deafblind
people in particular.
How can alternative journalism contribute to the struggle for disabled
people?
people?
Truly, alternative journalism is central to our
struggles, aswell as social networks are. I am not going to hide the reality
here: Alternative journalism is what most supports us. Alternative journalism
is effective. It gives us more visibility and opportunities. Alternative
journalism is highly inclusive. Conventional journalism, on the other hand,
does not support us. It is very sad to open a newspaper of great circulation in
Brazil and to observe pages, pages and more pages highlighting the notorious
corruption, highlighting the daily of the drug dealing and the murders.
However, it is rare to find something, a highlight on the overcoming and
achievements of a person with a disability. This is discouraging.
Here you can find My steps for development!, a guide written by Alex for other people with
disabilities.
In “My steps for development” I want to guide person with
disabilities – and perhaps even to guide person without disabilities on how to
achieve development. As usual, in my thoughts I will tell you a truth – my
truth. I think there are many truths. Every human being has his truth.
disabilities – and perhaps even to guide person without disabilities on how to
achieve development. As usual, in my thoughts I will tell you a truth – my
truth. I think there are many truths. Every human being has his truth.
“My steps” as you can see, may be similar or very different of
other steps , my steps are of a deafblind person, in the belief that deafblindness
is the condition that most “affects” the essence of society, because
it implies the distance imposed by visual and hearing loss, as well as the
impatience that generates communication difficulties . We do reference to deafblindness
as the most dreaded condition to human beings: the “staying alone” as
synonymous of abandonment, is a very different situation from
“Solitude” choice for enjoyment situation when we have no fear of
ourselves. In my life, I try to transmit and exercise “My steps for development”.
We must never interpret these steps as ready. The steps are in the daily
motions of life.
other steps , my steps are of a deafblind person, in the belief that deafblindness
is the condition that most “affects” the essence of society, because
it implies the distance imposed by visual and hearing loss, as well as the
impatience that generates communication difficulties . We do reference to deafblindness
as the most dreaded condition to human beings: the “staying alone” as
synonymous of abandonment, is a very different situation from
“Solitude” choice for enjoyment situation when we have no fear of
ourselves. In my life, I try to transmit and exercise “My steps for development”.
We must never interpret these steps as ready. The steps are in the daily
motions of life.
Knowing yourself
The first step, to know yourself – needs and abilities – it takes time,
so it does not fit at the time of the soap opera. All persons with
disabilities, especially deafblind people must realize that nothing is static,
so knowing yourself is a constant re-starting and it needs a lot of patience!
so it does not fit at the time of the soap opera. All persons with
disabilities, especially deafblind people must realize that nothing is static,
so knowing yourself is a constant re-starting and it needs a lot of patience!
Controlling of emotions
Controlling emotions is the second step but you cannot reach it without
passing through the first , i.e. , it is not possible to control our emotions
without self-knowledge. You can only take a new step safety if the last step
was solid. Controlling emotions plays an important role in our development. In
everyday life I observe often the desperation and fear in persons with
disabilities, as well as people who are deafblind, emotions are essentially
limited knowledge of ourselves.
passing through the first , i.e. , it is not possible to control our emotions
without self-knowledge. You can only take a new step safety if the last step
was solid. Controlling emotions plays an important role in our development. In
everyday life I observe often the desperation and fear in persons with
disabilities, as well as people who are deafblind, emotions are essentially
limited knowledge of ourselves.
Planning actions
Here we have the third step. To plan actions we must know ourselves and
control our emotion. It’s a fact! Planning is the mainspring of development,
but, a bad planning can knock you out in a short period of time. A bad planning
will bring up the lack of emotional control and we are going to see it clearly
I do not know myself deeply as I imagined. I thought to be able to do that but
in fact I have other needs. It’s pretty clear: if we know ourselves we will be
able to control our emotions and as a consequence of that, we will be able to
plan actions that can reach our abilities, not our needs.
control our emotion. It’s a fact! Planning is the mainspring of development,
but, a bad planning can knock you out in a short period of time. A bad planning
will bring up the lack of emotional control and we are going to see it clearly
I do not know myself deeply as I imagined. I thought to be able to do that but
in fact I have other needs. It’s pretty clear: if we know ourselves we will be
able to control our emotions and as a consequence of that, we will be able to
plan actions that can reach our abilities, not our needs.
Guiding means
Here we have the fourth step. When you know yourself, you control your
emotions. When emotions are under control, it’s possible to plan actions and
then, finally, guiding the means is possible. Guiding the means is the apex
because we live in a society and although we have many abilities, there isn’t a
perfect human being who doesn’t need any kind of support. I must warn that
guiding the mean can sometimes be very different from what we expect, it is, it
is possible that when we try to guide a person to help us, this person isn’t
interested. If you face a person who isn’t interested, honestly, do not try to
change this person. Turn around because you will find another person there who
is really interested for sure.
emotions. When emotions are under control, it’s possible to plan actions and
then, finally, guiding the means is possible. Guiding the means is the apex
because we live in a society and although we have many abilities, there isn’t a
perfect human being who doesn’t need any kind of support. I must warn that
guiding the mean can sometimes be very different from what we expect, it is, it
is possible that when we try to guide a person to help us, this person isn’t
interested. If you face a person who isn’t interested, honestly, do not try to
change this person. Turn around because you will find another person there who
is really interested for sure.
Dreams of a Deafblind Person
I dream that one day… I
will be “less” invisible for Humankind.
will be “less” invisible for Humankind.
I dream that one day…
Humankind will recover the patience it has lost.
Humankind will recover the patience it has lost.
I dream that one day…
Humankind will recover its wisdom and will understand my communication.
Humankind will recover its wisdom and will understand my communication.
I dream that one day… Humankind
will be close again as in ancient times.
will be close again as in ancient times.
I dream that one day…
Humankind will be free of prejudice and will be able to touch me without any
fear.
Humankind will be free of prejudice and will be able to touch me without any
fear.
I dream that one day… I
won’t be “just a brick in the wall” anymore, as Pink Floyd said in
the song “Another brick in the wall”.
won’t be “just a brick in the wall” anymore, as Pink Floyd said in
the song “Another brick in the wall”.
I dream that one day… I
won’t need to “drink from the same water fountain” as Carl Jung, one
of the founders of modern Psychoanalysis, said.
won’t need to “drink from the same water fountain” as Carl Jung, one
of the founders of modern Psychoanalysis, said.
I dream that one day…
Humankind will be able to eliminate the label that deafblindness is the most
terrifying condition.
Humankind will be able to eliminate the label that deafblindness is the most
terrifying condition.
I dream that one day…
Humankind will assume that “being alone” doesn’t mean to be
abandoned.
Humankind will assume that “being alone” doesn’t mean to be
abandoned.
I dream that one day… I
will sow the “loneliness” that deafblindness imposes us as a possible
aim to be enjoyed because we won’t be afraid of ourselves.
will sow the “loneliness” that deafblindness imposes us as a possible
aim to be enjoyed because we won’t be afraid of ourselves.
I dream that one day… I
will change the pre-assumptions concerning my identity and the sentence which
is currently repeated “Poor thing, he/she is deafblind” will be left
in the past.
will change the pre-assumptions concerning my identity and the sentence which
is currently repeated “Poor thing, he/she is deafblind” will be left
in the past.
I dream that one day…
Humankind will see my being and will indeed value my essence as my fight and
then will say “Great! He/she is a deafblind person”.
Humankind will see my being and will indeed value my essence as my fight and
then will say “Great! He/she is a deafblind person”.
I dream that one day… I
will erase the shame from Humankind’s mind as a tool of controlling.
will erase the shame from Humankind’s mind as a tool of controlling.
I dream that one day…
Humankind will understand and value that all people are a Divine Creations:
alike, however, incomplete.
Humankind will understand and value that all people are a Divine Creations:
alike, however, incomplete.
I dream that one day… I
will not just “exist” but actually “be”.
will not just “exist” but actually “be”.
I dream that one day… I
will learn to be “strong” so that nothing can defeat me.
will learn to be “strong” so that nothing can defeat me.
I dream that one day… I
will be “me” so nobody will forget me.
will be “me” so nobody will forget me.
I dream that one day… My
dreams will design the future.
dreams will design the future.
I dream that one day…
Humankind will be “human”.
Humankind will be “human”.
In 2014 Alex
wrote the book „Beyond Existing We Should Be!“
wrote the book „Beyond Existing We Should Be!“
About this book
Alex worte us: It is a book in which I write several thoughts and reflections
that gave me and still give me sustenance to my development. I, Alex Garcia, a
deafblind person, graduated and post graduated in Special Education, overturned
paradigms and I still do it mainly because I am an extremely fulfilled human
being. These thoughts follow me, they are part of me. To me, these ideas were
and are a kind of “recipe to success “, built from my daily relations
with the people and the environment that surround me. The thoughts and
reflections which are in “Beyond Existing We Should Be”, taught me
two maxims: to be strong so nothing can defeat me and to be myself so no one
can forget me.
Alex worte us: It is a book in which I write several thoughts and reflections
that gave me and still give me sustenance to my development. I, Alex Garcia, a
deafblind person, graduated and post graduated in Special Education, overturned
paradigms and I still do it mainly because I am an extremely fulfilled human
being. These thoughts follow me, they are part of me. To me, these ideas were
and are a kind of “recipe to success “, built from my daily relations
with the people and the environment that surround me. The thoughts and
reflections which are in “Beyond Existing We Should Be”, taught me
two maxims: to be strong so nothing can defeat me and to be myself so no one
can forget me.
The
“gaucho” Alex Garcia, is one of the most famous persons in the world,
he combines three major characteristics: a Rare Disease, Deafness and
Blindness. He is the coordinator of the Rio Grande do Sul Regional – a south
state in Brazil – for the Baresi Institute. Specialist in Special Education by
the UFSM/RS, he was the first Brazilian Deafblind person who attended an
university. He is the founder of the “Gaucha” Association of Parents
and Friends of Deafblind people and people with Multiple Disabilities –
AGAPASM. He is the pioneer in Brazil to develop the first research to find
Deafblind people all over the state of Rio Grande do Sul and he had, as one of
his most important supporters, The Association of the Swedish Deafblind, FSDB.
He is also considered “the father” of Deafblindness in the state of
Rio Grande do Sul. Since 2004, as a volunteer, he structured for the first time
in Brazil, a Program of Home Care to the families of Deafblind people, to help
them with information and educational orientation and also medical and social
referrals, the training of professionals to attend Deafblind people in their
original places and also, the adaptation of these places to their needs as well
as the development of special programs in schools. The Writer: he is the first
Deafblind person to write a book about education in Latin America. His book
“Deafblindness: Empirical And Scientific” was published in 2008. In
2010, he published a book for children: “The Big Revolution”. He has never
given up of his autonomy, and so he is registered at the National Library as
Individual Editor – Editorial Prefix 908690. In 2009 he won the
“Sentidos” Award, a national award, due to his overcoming story of
life, chosen as the biggest of the year in Brazil. He is also an Honorary
Rotarian – Rotary Club of São Luiz Gonzaga in the state of Rio Grande do Sul –
RS. He was the first Deafblind Person to be an alumni at the Mobility
International Program in the USA, in 27 years of the history of this
organization. He was the first Deafblind Person in Brazil and Latin America to
participate with total freedom, in a Training Program for teachers who deal
with disabled students. It was held in the city of Cuiabá, in the state of Mato
Grosso – MT. Another training occurred in Niteroi, in the state of Rio de
Janeiro – RJ, the students were two educators with disabilities, a young blind
girl and a deaf man. Alex also writes for the Magazine Reação and for the
website Planeta Educação. He is a consultant of the Educational network Redem
and the Institute Inclusion Brazil. Alex Garcia was the only deafblind person
in the world to participate of the High Level Meeting on Disability and
Development “The way forward: Disability Inclusive Development Agenda for
2015 and Beyond” held in 2013 at the United Nations headquarters in New
York.
“gaucho” Alex Garcia, is one of the most famous persons in the world,
he combines three major characteristics: a Rare Disease, Deafness and
Blindness. He is the coordinator of the Rio Grande do Sul Regional – a south
state in Brazil – for the Baresi Institute. Specialist in Special Education by
the UFSM/RS, he was the first Brazilian Deafblind person who attended an
university. He is the founder of the “Gaucha” Association of Parents
and Friends of Deafblind people and people with Multiple Disabilities –
AGAPASM. He is the pioneer in Brazil to develop the first research to find
Deafblind people all over the state of Rio Grande do Sul and he had, as one of
his most important supporters, The Association of the Swedish Deafblind, FSDB.
He is also considered “the father” of Deafblindness in the state of
Rio Grande do Sul. Since 2004, as a volunteer, he structured for the first time
in Brazil, a Program of Home Care to the families of Deafblind people, to help
them with information and educational orientation and also medical and social
referrals, the training of professionals to attend Deafblind people in their
original places and also, the adaptation of these places to their needs as well
as the development of special programs in schools. The Writer: he is the first
Deafblind person to write a book about education in Latin America. His book
“Deafblindness: Empirical And Scientific” was published in 2008. In
2010, he published a book for children: “The Big Revolution”. He has never
given up of his autonomy, and so he is registered at the National Library as
Individual Editor – Editorial Prefix 908690. In 2009 he won the
“Sentidos” Award, a national award, due to his overcoming story of
life, chosen as the biggest of the year in Brazil. He is also an Honorary
Rotarian – Rotary Club of São Luiz Gonzaga in the state of Rio Grande do Sul –
RS. He was the first Deafblind Person to be an alumni at the Mobility
International Program in the USA, in 27 years of the history of this
organization. He was the first Deafblind Person in Brazil and Latin America to
participate with total freedom, in a Training Program for teachers who deal
with disabled students. It was held in the city of Cuiabá, in the state of Mato
Grosso – MT. Another training occurred in Niteroi, in the state of Rio de
Janeiro – RJ, the students were two educators with disabilities, a young blind
girl and a deaf man. Alex also writes for the Magazine Reação and for the
website Planeta Educação. He is a consultant of the Educational network Redem
and the Institute Inclusion Brazil. Alex Garcia was the only deafblind person
in the world to participate of the High Level Meeting on Disability and
Development “The way forward: Disability Inclusive Development Agenda for
2015 and Beyond” held in 2013 at the United Nations headquarters in New
York.
My Thoughts:
I really believe
that all of us, with our differences, are truly and essentially great works of
God and that belief is my religion. All our fights keep our balance and support
my “incomplete being” so I keep walking.
that all of us, with our differences, are truly and essentially great works of
God and that belief is my religion. All our fights keep our balance and support
my “incomplete being” so I keep walking.
Deafblindness is
the disability which “affects” most the essence of the society
because it takes to a distance imposed by the visual and auditory losses as
well as the impatience which is generated by the difficulties in communication.
So, what concerns to Deafblind persons, the most feared condition lived by us:
“being alone” as a synonymous of abandonment, which is different from
“loneliness”, because this state you can choose and enjoy it when you
are not afraid of yourself.
the disability which “affects” most the essence of the society
because it takes to a distance imposed by the visual and auditory losses as
well as the impatience which is generated by the difficulties in communication.
So, what concerns to Deafblind persons, the most feared condition lived by us:
“being alone” as a synonymous of abandonment, which is different from
“loneliness”, because this state you can choose and enjoy it when you
are not afraid of yourself.
Inclusion to me is
to rupture the assumption and shame, these powerful social control tools that
get and maintain the continuity, the flow. To obtain and maintain the truth and
happiness, grounded in the justice of the free man. Inclusion is denying the
static, denying the interest that creates opportunities to certain people who
are supposed to give something back, in return. The intolerance which designs
the frontiers. To deny and subtract men´s freedom and autonomy.
to rupture the assumption and shame, these powerful social control tools that
get and maintain the continuity, the flow. To obtain and maintain the truth and
happiness, grounded in the justice of the free man. Inclusion is denying the
static, denying the interest that creates opportunities to certain people who
are supposed to give something back, in return. The intolerance which designs
the frontiers. To deny and subtract men´s freedom and autonomy.
To be happy. To
have freedom of thoughts and actions. To be human. To support ourselves and our
fellow-creatures. To be strong. To be successful. To be proud of being the way
we are. We observe everything using the sense of reason without losing the
tenderness. All these and much more is totally possible, with intelligence,
faith and determination.
have freedom of thoughts and actions. To be human. To support ourselves and our
fellow-creatures. To be strong. To be successful. To be proud of being the way
we are. We observe everything using the sense of reason without losing the
tenderness. All these and much more is totally possible, with intelligence,
faith and determination.
Any organization
is born from continuity . It comes from the need of movement. It comes from the
desire of the truth and happiness, grounded in the justice of the free man. It
denies the statics. The intolerance which designs the frontiers. It denies to
subtract the freedom and independence of man.
is born from continuity . It comes from the need of movement. It comes from the
desire of the truth and happiness, grounded in the justice of the free man. It
denies the statics. The intolerance which designs the frontiers. It denies to
subtract the freedom and independence of man.
May all the
“choices” be grounded on the historic contribution to the movement
and not on the exchanges of favors which were born yesterday and that “The
Nothing Over Us Without Us ” may truly become “Real Power” and
not “False Power”, as I see in many occasions.
“choices” be grounded on the historic contribution to the movement
and not on the exchanges of favors which were born yesterday and that “The
Nothing Over Us Without Us ” may truly become “Real Power” and
not “False Power”, as I see in many occasions.
I refuse to be
just “one more brick in the wall”, as Pink Floyd sang, in
“Another Brick In The Wall”. In some part of the song, Pink Floyd
says: “All in all it was just another brick in the wall”. I am going
to fight more and more to further deny in order of not being one more brick in
the wall.
just “one more brick in the wall”, as Pink Floyd sang, in
“Another Brick In The Wall”. In some part of the song, Pink Floyd
says: “All in all it was just another brick in the wall”. I am going
to fight more and more to further deny in order of not being one more brick in
the wall.
I observe in my way, having a deafblindness as my eternal
fellow. And if the humankind wants to value me, may it do it while I am still
alive, recalling * Nelson Cavaquinho, who used to say “I know that
tomorrow /when I die/ my friends will say/ that I had a good heart/ some will
even cry/ and they wi ll want to honor me/ making me a gold guitar/ but after
time goes by/ I know that no one is going to remember/ that I am gone/ that is
why I think like that/ if someone wants to do something for me/ may it do it
now/ give me the flowers while I am alive/ the affection, the friendly hand/ to
relieve my ouch/ after I call myself nostalgia/ I don´t need vanity/ I want
prayers and nothing more”.
fellow. And if the humankind wants to value me, may it do it while I am still
alive, recalling * Nelson Cavaquinho, who used to say “I know that
tomorrow /when I die/ my friends will say/ that I had a good heart/ some will
even cry/ and they wi ll want to honor me/ making me a gold guitar/ but after
time goes by/ I know that no one is going to remember/ that I am gone/ that is
why I think like that/ if someone wants to do something for me/ may it do it
now/ give me the flowers while I am alive/ the affection, the friendly hand/ to
relieve my ouch/ after I call myself nostalgia/ I don´t need vanity/ I want
prayers and nothing more”.
Indeed, the
victory is the result of persistency. Therefore I love developing my work
because I realize, in the handshakes and in the hugs I receive from people, the
huge respect they have as well as the appreciation they offer me.
victory is the result of persistency. Therefore I love developing my work
because I realize, in the handshakes and in the hugs I receive from people, the
huge respect they have as well as the appreciation they offer me.
We can measure the
strength of a deafblind person, through the planning he or she develops exactly
for not listening or nor seeing, the planning becomes fundamental.
strength of a deafblind person, through the planning he or she develops exactly
for not listening or nor seeing, the planning becomes fundamental.
It is a serious
and historical mistake to address disability as a whole. It is as serious as it
is unacceptable. The development is individual, not collective;
and historical mistake to address disability as a whole. It is as serious as it
is unacceptable. The development is individual, not collective;
Deafblind people
have five powerful enemies to defeat: fear, presupposition, shame, distance and
impatience.
have five powerful enemies to defeat: fear, presupposition, shame, distance and
impatience.
Having the straight
representation, real, respectful and responsible, is important but attention, i
t is not the case of having a deafblind or any other person with disability to
represent their peers, that are in equal condition of invisibility because it
provides subalternity and submission to exchange of favors. I´m
straightforward: a person to have voice and to represent others must, in
advance, be free and independent to face the “normality”.
representation, real, respectful and responsible, is important but attention, i
t is not the case of having a deafblind or any other person with disability to
represent their peers, that are in equal condition of invisibility because it
provides subalternity and submission to exchange of favors. I´m
straightforward: a person to have voice and to represent others must, in
advance, be free and independent to face the “normality”.
Fear in a
deafblind person will disturb his/her mind, guiding his/her behavior in such a
way that he or she will fail to develop appropriate planning, and without it,
everything will collapse.
deafblind person will disturb his/her mind, guiding his/her behavior in such a
way that he or she will fail to develop appropriate planning, and without it,
everything will collapse.
The presupposition
is, actually, an early thought. Our society in general, when reading the word
“deafblind”, presupposes the identity of a person. A sea of doubts is
cast upon us. Quickly, we are in a position of extreme disadvantage. We start
having to prove something to someone.
is, actually, an early thought. Our society in general, when reading the word
“deafblind”, presupposes the identity of a person. A sea of doubts is
cast upon us. Quickly, we are in a position of extreme disadvantage. We start
having to prove something to someone.
For a deafblind
person, shame is sneaky. It comes from the cradle, it comes from the religion.
The person feels ashamed but doesn´t know the reason and the purpose. But it´s
clear! The person confuses guilt with shame and vice versa. In this mess called
shame, a “tsunami” is formed.
person, shame is sneaky. It comes from the cradle, it comes from the religion.
The person feels ashamed but doesn´t know the reason and the purpose. But it´s
clear! The person confuses guilt with shame and vice versa. In this mess called
shame, a “tsunami” is formed.
Distance to a
deafblind person is an enormous challenge, because all the means of
communication we use are of closeness. Without being closer there isn´t a
chance to establish presential communication with another human being.
Impatience is something terrible for a deafblind person. All the communication
models we use are slower. Therefore, we need to be patient. I consider myself a
shameless in the servicer of Inclusion. So give up! I am not ashamed to be as I
am. It is impossible to control me with this “tool” called shame.
deafblind person is an enormous challenge, because all the means of
communication we use are of closeness. Without being closer there isn´t a
chance to establish presential communication with another human being.
Impatience is something terrible for a deafblind person. All the communication
models we use are slower. Therefore, we need to be patient. I consider myself a
shameless in the servicer of Inclusion. So give up! I am not ashamed to be as I
am. It is impossible to control me with this “tool” called shame.
Deafblind people
should learn how to be strong. Yes, we can more and more strengthen our
identity, denying what threaten us, rebelling against the oppression, being
unresigned to what they present to us. I learned to be strong so nothing can
defeat me, above all, I learned to be myself so no one forgets me.
should learn how to be strong. Yes, we can more and more strengthen our
identity, denying what threaten us, rebelling against the oppression, being
unresigned to what they present to us. I learned to be strong so nothing can
defeat me, above all, I learned to be myself so no one forgets me.
I refuse to simply
exist. I must be. I must be to live intensely the freedom that I have left.
exist. I must be. I must be to live intensely the freedom that I have left.
My attitudes
follow what Martin Luther King Jr. taught us when he said: “Cowardice asks
the question: is it safe? Expediency asks the question: is it politic? Vanity
asks the question: is it popular? But conscience asks the question: is it
right? And there comes a time when one must take a position that is neither
safe, nor politic, nor popular, but one must take it because it is right.”
In this way, I take the right position.
follow what Martin Luther King Jr. taught us when he said: “Cowardice asks
the question: is it safe? Expediency asks the question: is it politic? Vanity
asks the question: is it popular? But conscience asks the question: is it
right? And there comes a time when one must take a position that is neither
safe, nor politic, nor popular, but one must take it because it is right.”
In this way, I take the right position.
I am completely
against the “medical model”. The model and culture of “the
normalized body”. I mean, for this model, our bodies, only have social
value if they can be “fixed”. Our rights to a worthy life are denied.
This model and culture substantially increase our problematic, for they showed
us only one door, one way – our cure or nothing.
against the “medical model”. The model and culture of “the
normalized body”. I mean, for this model, our bodies, only have social
value if they can be “fixed”. Our rights to a worthy life are denied.
This model and culture substantially increase our problematic, for they showed
us only one door, one way – our cure or nothing.
Life for several
times, beat me up. And in each bashing, I have learned different lessons. These
moments made me realize I would have to have more attitude. By having attitude,
the bashings decreased. Is it an absolute truth?
times, beat me up. And in each bashing, I have learned different lessons. These
moments made me realize I would have to have more attitude. By having attitude,
the bashings decreased. Is it an absolute truth?
It´s clear that
the understanding precedes the execution. Therefore, it´s necessary to be an
inquirer and a dreamer Qui jote and, then, bang the spirits.
the understanding precedes the execution. Therefore, it´s necessary to be an
inquirer and a dreamer Qui jote and, then, bang the spirits.
Poverty is the
same as being the most invisible of the invisible. A poor person is a strange
in his/her own country. Creating a favorable environment to equal opportunities
means as a prior request, having “voice”. Are the “poor”
invited to have “voice” ? Of course not! They are invited only to
justify, with their physical presence, the decisions that in their name, were
taken.
same as being the most invisible of the invisible. A poor person is a strange
in his/her own country. Creating a favorable environment to equal opportunities
means as a prior request, having “voice”. Are the “poor”
invited to have “voice” ? Of course not! They are invited only to
justify, with their physical presence, the decisions that in their name, were
taken.
Historically, I
refuse to accept what Carl Jung, one of the founders of Modern Psychoanalysis,
used to say to us, that “we all drink from the same source.” I refuse
to drink from the same source. In this same source where the gags and the
“brakes” are to our full development.
refuse to accept what Carl Jung, one of the founders of Modern Psychoanalysis,
used to say to us, that “we all drink from the same source.” I refuse
to drink from the same source. In this same source where the gags and the
“brakes” are to our full development.
I always ask for
forgiveness to people, if my considerations are not important, however, truly,
my being does not allow me to make speeches. I must be voracious and straight
in order to develop a reflection.
forgiveness to people, if my considerations are not important, however, truly,
my being does not allow me to make speeches. I must be voracious and straight
in order to develop a reflection.
Many leaders in
the area of people with disabilities say when we touch the wound ”
“Gosh! You seem to have hate in your heart. Your complains are hurting
people. Apologize yourself!” And you apologize. Then the leader
says:”You are a sweet heart.” Be careful! Keep out! This leader is a
corrupt one.
the area of people with disabilities say when we touch the wound ”
“Gosh! You seem to have hate in your heart. Your complains are hurting
people. Apologize yourself!” And you apologize. Then the leader
says:”You are a sweet heart.” Be careful! Keep out! This leader is a
corrupt one.
For me, it´s
clear. The main challenge is the unequal power relation that affects directly
the development of our full identity.
clear. The main challenge is the unequal power relation that affects directly
the development of our full identity.
We should be very
careful when someone talks about representation. How will a blind person
represent a deaf person? How can a person without any disabilities represent a
deafblind person?
careful when someone talks about representation. How will a blind person
represent a deaf person? How can a person without any disabilities represent a
deafblind person?
To reach the full
Inclusion and succeed in the public policies, to make them relevant, it is
required to have each representative in the right place. I speak in this way
because throughout my life, I have observed acts contrary to logic.
Inclusion and succeed in the public policies, to make them relevant, it is
required to have each representative in the right place. I speak in this way
because throughout my life, I have observed acts contrary to logic.
Deafblind people
don´t know what really affects them. Therefore, in general terms, the collective
of deafblind people don´t reach effective changes to improve their conditions
of life.
don´t know what really affects them. Therefore, in general terms, the collective
of deafblind people don´t reach effective changes to improve their conditions
of life.
The Good Samaritan
doesn´t exist. The unequal relation of power exists between people without
disabilities and people with disabilities, although there is also an unequal
relation of power among the people with different disabilities.
doesn´t exist. The unequal relation of power exists between people without
disabilities and people with disabilities, although there is also an unequal
relation of power among the people with different disabilities.
I am a deafblind
person and a person with a rare disease and I can tell you, our invisibility
is, for sure, a powerful tool that is manipulated to keep our subalternity.
person and a person with a rare disease and I can tell you, our invisibility
is, for sure, a powerful tool that is manipulated to keep our subalternity.
Addressing
disability as a whole is a partisan speech and, therefore, it is void. The
maintenance of this speech will produce the invisible of the invisible. This is
because this speech consigns more power to the inequality of power itself.
disability as a whole is a partisan speech and, therefore, it is void. The
maintenance of this speech will produce the invisible of the invisible. This is
because this speech consigns more power to the inequality of power itself.
I believe that all
people with disabilities are Human Beings. All. Deafblind ones, too. For it is
very hard to be the most invisible of the invisible. It is very hard to live an
uneven relationship of power that advances every day without being confronted.
people with disabilities are Human Beings. All. Deafblind ones, too. For it is
very hard to be the most invisible of the invisible. It is very hard to live an
uneven relationship of power that advances every day without being confronted.
The unequal power
relationship “said” that we. deafblind people. will be eternal
apprentices. This “eternal” speech is what we must bring down.
relationship “said” that we. deafblind people. will be eternal
apprentices. This “eternal” speech is what we must bring down.
Ensuring voice to
each person is the essence of an inclusive society. So I get upset when the
first question is, “What organization does he she represent? What
organization is he she part of?” Too much representation. Excessive
“being part of …”. And where are the individual rights?
each person is the essence of an inclusive society. So I get upset when the
first question is, “What organization does he she represent? What
organization is he she part of?” Too much representation. Excessive
“being part of …”. And where are the individual rights?
It is necessary to
have courage to make ruptures, to rebuild new structures. It is urgent to
eliminate all and any representation which was distorted from our identity. A
lot of those who claim to represent us, keep themselves as such, with the
support of the powerful and their money. And for sure not all of them act
democratically and neither are part of associative parties, legitimized by
their bases. It is necessary to rethink the individual identity and capacity to
self-representation.
have courage to make ruptures, to rebuild new structures. It is urgent to
eliminate all and any representation which was distorted from our identity. A
lot of those who claim to represent us, keep themselves as such, with the
support of the powerful and their money. And for sure not all of them act
democratically and neither are part of associative parties, legitimized by
their bases. It is necessary to rethink the individual identity and capacity to
self-representation.
God, to me, is not
in Heaven nor in the Earth. He is not in any religion nor in any image or book.
God, to me, is in our attitudes . And I am absolutely sure that in all the
attitudes I`ve taken in my life as wll as in the ones I wi ll take, God is
present in all of them! Where does this certainty come from? I have this
certainty because I am alive to this day and despite all my difficulties, I
wake up each morning saying; “Hi, hi, I woke up for another day of joy.
in Heaven nor in the Earth. He is not in any religion nor in any image or book.
God, to me, is in our attitudes . And I am absolutely sure that in all the
attitudes I`ve taken in my life as wll as in the ones I wi ll take, God is
present in all of them! Where does this certainty come from? I have this
certainty because I am alive to this day and despite all my difficulties, I
wake up each morning saying; “Hi, hi, I woke up for another day of joy.
Does diminishing
the stigmait favor the Inclusion? Yes! Diminishing the stigma favors the
Inclusion, but actually, the best thing to do wouldn´t be directly attacking
the stigma. We should attack what builds the stigma, in other words, the
presupposition and the shame. The presupposition and the shame, are powerful
tools of social control. We live in a society where the relation of power is
installed and consequently the tendency to control is huge and almost a rule.
In this relation of power, people need to control other people, precisely to
maintain the power and to do that, they use the tools of control, which are
presupposition (anticipating thinking) and the shame.
the stigmait favor the Inclusion? Yes! Diminishing the stigma favors the
Inclusion, but actually, the best thing to do wouldn´t be directly attacking
the stigma. We should attack what builds the stigma, in other words, the
presupposition and the shame. The presupposition and the shame, are powerful
tools of social control. We live in a society where the relation of power is
installed and consequently the tendency to control is huge and almost a rule.
In this relation of power, people need to control other people, precisely to
maintain the power and to do that, they use the tools of control, which are
presupposition (anticipating thinking) and the shame.
The
presupposition, to me, after being applied on the identity of a person for long
time, solidifies what we call stigma, like a brand. Examples of how
presupposition affects the identity- when people see a blind person on the
street, they think: “Poor guy, he can´t see!”, In general, when
people see a person on a wheelchair on the street, they think: “Poor guy,
he can´t walk!”. This is a common reaction that happens with all persons
with disabilities. Then, why always “poor”? Then, time goes by. There
is always an identity being watered by the “poor guy”. And after
several years, what do we have? Well, we have one more poor blind, one more
poor person on a wheelchair, one more poor person with disability. I´m going to
be a poor guy because everyone sees me as a poor one! This is it! The
presupposition won. The tool of control fulfilled its duty. The Cautious-Power
annihilated the possibility of the person to become someone that could
“disturb”.
presupposition, to me, after being applied on the identity of a person for long
time, solidifies what we call stigma, like a brand. Examples of how
presupposition affects the identity- when people see a blind person on the
street, they think: “Poor guy, he can´t see!”, In general, when
people see a person on a wheelchair on the street, they think: “Poor guy,
he can´t walk!”. This is a common reaction that happens with all persons
with disabilities. Then, why always “poor”? Then, time goes by. There
is always an identity being watered by the “poor guy”. And after
several years, what do we have? Well, we have one more poor blind, one more
poor person on a wheelchair, one more poor person with disability. I´m going to
be a poor guy because everyone sees me as a poor one! This is it! The
presupposition won. The tool of control fulfilled its duty. The Cautious-Power
annihilated the possibility of the person to become someone that could
“disturb”.
We have one bi
llion people with disabilities in the world, we are the biggest minority
worldwide, but just a few with autonomy. The overwhelming majority lives its
presupposed identity, with no power in their power relations, that is, they
live being controlled.
llion people with disabilities in the world, we are the biggest minority
worldwide, but just a few with autonomy. The overwhelming majority lives its
presupposed identity, with no power in their power relations, that is, they
live being controlled.
How about the
shame? The shame to me, is the most terrible tool of control. It is terrible
because it acts in the social ignorance and in the human being by confusing
“guilt and shame”. And where is this confusion? In general people
feel ashamed without being guilty. They are not gui lty, but they feel ashamed
and here is the power-control of the shame tool. People are not sure of the
guilt. The shame as a tool of control acts exactly in the uncertainty. To me,
it is clear and proven – after experiencing several cultures and behavior –
that people with more developed disabilities, are those who are very clear
about what is “guilt” and “no guilt”. They only feel
ashamed if they are guilty. If they are not guilty, they don´t feel ashamed.
shame? The shame to me, is the most terrible tool of control. It is terrible
because it acts in the social ignorance and in the human being by confusing
“guilt and shame”. And where is this confusion? In general people
feel ashamed without being guilty. They are not gui lty, but they feel ashamed
and here is the power-control of the shame tool. People are not sure of the
guilt. The shame as a tool of control acts exactly in the uncertainty. To me,
it is clear and proven – after experiencing several cultures and behavior –
that people with more developed disabilities, are those who are very clear
about what is “guilt” and “no guilt”. They only feel
ashamed if they are guilty. If they are not guilty, they don´t feel ashamed.
The presupposition
and the shame as they subordinate people with disabilities, empower them. This
is what I call “the chain of interest”. Power, most of the time,
chooses punctual and subordinate people with disabilities to receive jobs, status
and prestige. But this choice serves just to keep them in control. Everyone
knows that this practice is common today. Many of our “leaders” are
like that. Power gives power to those who will be agents, to those who will not
“hurt” power relations, that is, those who wi ll not break the chain.
and the shame as they subordinate people with disabilities, empower them. This
is what I call “the chain of interest”. Power, most of the time,
chooses punctual and subordinate people with disabilities to receive jobs, status
and prestige. But this choice serves just to keep them in control. Everyone
knows that this practice is common today. Many of our “leaders” are
like that. Power gives power to those who will be agents, to those who will not
“hurt” power relations, that is, those who wi ll not break the chain.
The presupposition
and the shame, as they subordinate deficient people, they also give them power.
That´s what I call “in the flow of the interest”. The Power, in most
cases, choose menial people with punctual deficiencies to receive position,
status and prestige. But, this choice only serves to maintain the control.
Everyone knows that nowadays this practice is very common. Manny of our
“leaders” are like that. The Power gives the Power to those who wi ll
be agents, to those who are not going to “hurt” the power relations,
that is, those who are not going to disrupt the chain.
and the shame, as they subordinate deficient people, they also give them power.
That´s what I call “in the flow of the interest”. The Power, in most
cases, choose menial people with punctual deficiencies to receive position,
status and prestige. But, this choice only serves to maintain the control.
Everyone knows that nowadays this practice is very common. Manny of our
“leaders” are like that. The Power gives the Power to those who wi ll
be agents, to those who are not going to “hurt” the power relations,
that is, those who are not going to disrupt the chain.
