Thank you very much, it’s an honor to be here.
My name is Fernanda Santana, I’m a Brazilian
autistic self-advocate, member of Abraça, the Brazilian Association of Action
for the Rights of Autistic People, and I’d like to thank our partner Autistic
Minority International and, of course, Lumos and UNICEF for making it possible
for me to be here today. What I’ll say is, in fact, the current opinion of the
entire autistic community … not doctors, not parents, but autistic people
themselves. And all the essence, of course, is much the same for people with
other disabilities too.
I’d like to start by quoting one of the general
principles of the Convention on the Rights of Persons with Disabilities: “the
respect for difference and acceptance of persons with disabilities as part of
human diversity and humanity”. For us, autistic people, the keyword is
neurodiversity. And we are proud to say that our neurodiversity is truly an
expression of the human diversity. That’s our identity. Our autism isn’t a
disease or a mental illness, neither is it a curse, our autism is part of who
we are. And that’s why the existence of a cure isn’t possible. Because people are
who they are, and their differences are important too.
Autism may be a relatively new word, but we have
been here for a long time, across the entire history of mankind, contributing
in our way. Unfortunately, society has been cruel to us. And the children are,
of course, who suffer most. Starting with the difficulty of diagnosis,
especially for autistic girls and women, who often go unnoticed. In so many
places it is still hard to find doctors and other professionals that can tell
you, for sure, if you are autistic or not. Especially if you are a little girl
who uses her mouth to talk. Many receive misdiagnosis and wrong treatments, and
unnecessary medication. But a correct diagnosis isn’t a guarantee that all will
be fine.
I know it’s hard for a family to notice that their
child is different from what they expected. That’s frustrating, for sure. But
if you think the worst about autism, just the bad part, if you think that it’s
terrible and that autistic people can’t be happy, can’t live a “normal” life, can’t
do anything at all, can’t have a job, or study, or marry … well, of course it
will be the worst to hear that your child is autistic.
All over the world, are desperate families without
information, without help, without any support at all. And because of this lack
of support, they are easily misled. They give all the money they have to the
first person who promises a cure, a fake-cure. And then the most bizarre things
can happen. That are the “alternative therapies”. In Brazil, for example, we
are fighting against the MMS protocol, which is industrial-strength bleach that
the parents give their own autistic children to drink or force it into their
rectum in form of an enema.
It’s so strong that it erodes the intestines to the
point that they literally come out in pieces. Recently we heard about a Chinese
clinic that killed a little autistic boy by making him walk absurd distances,
just because they think that autism is laziness. In France, for some reason,
some psychiatrists wrap autistic kids in cold wet towels and they call that a
treatment.
In many countries autistic children are being
exposed to injections of stem cells, for which there is no scientific
justification. Some people make autistic children breathe pure oxygen in
chambers that may burst into flames. Others suggest chemical castration. Or
chelation, which removes all metals from the body, including calcium, which is
very important to the organism. We also heard about brain surgery and other
horrible things. Occasionally, someone dies, but the “alternative therapies”
continue.
The convention says that “No one shall be subjected
to torture or to cruel, inhuman or degrading treatment or punishment”. But that
is what’s happening today.
More conscious families, or those that simply don’t
have enough money to pay for these dangerous “alternative therapies”, seek
healing through unproven and odd diets and, of course, behavioural therapies,
which is a polite name for brainwashing. Children are trained to pretend they
aren’t autistic, trained to hide their true identity, to obey without
opposition. The psychological damage is a matter of time. Compliance-based
therapies, such as ABA, also make autistic children more vulnerable to other
forms of violence, including bullying and sexual abuse.
Over-medicalization is very common, to drug and
dope autistic children is an easy way to make them seem calm and controllable.
If that does not work, then there are the mental asylums and institutions. Or,
if the family has enough money, the most contemporary version, an entire
housing complex that simulates the real world and keeps autistic people
isolated from the real community. Is that respect? Is that protection? I don’t
think so. There is no consent and it isn’t in the best interest of the child.
These children are NOT having their rights
respected. And they will not, not while we don’t overcome the awareness stage
and start talking about acceptance and respect. That is what we need today. We
need self-advocacy. We must start to talk about what these kids are capable of,
we must empower them by telling them that they can do it, can decide for
themselves. Even those who don’t use their mouths to speak have to know they
have rights about themselves, about their body, their health, their life.
Society needs to know that autism is more than some
difficulties and that it isn’t a disease. Needs to understand that autism does
not need to be defeated, because trying to do so causes the defeating of
autistic people themselves and their own rights, their self-confidence, their
self-esteem, their possibilities and hopes.
We need you to stop the violence against autistic
children by bring information to the world. Not information about medical
treatments, but about human rights, respect and acceptance. The governments
need to give support to the families, the schools need to receive instruction,
and children need to grow-up with their self-esteem and general health intact. That’s
the only way. The respectful way. Not just to autistic children, but for
children with any disability … who are different, sure, but never less.
Thank
you very much.
Washington
Lima, Atleta, years old, hails from the state of Paraná, Brazil, and lives in
the city of Curitiba. She was diagnosed with Autism Spectrum Disorder only
after a serious depression during her adolescence, caused by her difficulties
of understanding herself and the world. Today she considers her situation to be
resolved for the better. She is an architecture student, an activist, and is
engaged to be married.
Translated by Catherine V. Howard
A few weeks ago, the United Nations held the Ninth
Session of the Conference of the States Parties to the Convention on the Rights
of Persons with Disabilities (CRPD). The meeting was held in New York City on
June 14-16, 2016, at the United Nations headquarters. One of the invited
speakers was the Brazilian activist Fernanda Santana, who gave a talk entitled
“Ending violence against disabled children and adolescents” at one of the side
events.
After some back-and-forth in our emails, Fernanda and I managed to meet up in the big. Apple. We got a sandwich and visited one of my favorite bookstores, and then began our interview. Fernanda talked a bit about her experience of coming to take part in the UN conference and about her perspective on autism and activism in Brazil.
Happy reading!
Alexia Klein – Organizations and activists from around the world participated in the Conference here in New York last week. How did you get involved, what was it like witnessing such an important event for international human rights, and what will you bring back from this experience to your activism in Brazil?
Fernanda Santana – My history with activism is more recent than you’d imagine. If someone had told me a year ago that I’d be going so far, that I’d be giving a talk at the UN, I’d never have believed it. It’s so crazy, you know? For a long time, I was one of those internet activists, admiring anyone who went abroad to put themselves on the front lines, but the idea of doing this would have really frightened me. It still does. I don’t know what changed, but one day I decided to move forward and do something different. Look, I’m certainly not saying that publishing information on the internet isn’t important, I think it’s essential, but we can’t stop there; we need representation in the outside world as well.
The first major barrier for me was coming out as a disabled person, as an autistic person, coming out to everybody: at college, to my family, to my friends, everywhere that I hung out. I don’t have any of the most obvious characteristics, those that you recognize immediately, so I manage (and have managed, my whole life) to pass as someone neurotypical. It’s exhausting, it’s draining, and mainly it’s depressing, but I’ve managed to do so, and this way I passed unnoticed for a long time, dodging all the social stigma that’s attached to the group I belong to.
One day, I began to think about how hypocritical this is, you know? I talked about respect and identity, but I lived in hiding. One day, I got tired of this and decided I wouldn’t lie any more, that I’d start being more honest with myself and with my community. By coming out about being autistic, I could start to talk about the subject outside the internet, which was very important for me. In Brazil, and specifically in the region where I live, there are many different groups that are defending the rights of autistic people. I’ve seen many meetings and events being organized recently.
I even tried to participate in some of these meetings, but (I know that will sound strange) I never felt quite so out of place as in one of those events or meetings about autism. Shouldn’t it be just the opposite? The fact is that none of them were meetings of autistic people; meetings about autism are meetings of neurotypical parents and/or doctors and other health or education professionals, which, oddly enough, seem to have a vision that’s totally the opposite of ours. This is something else I don’t know how to explain.
I don’t even know where other autistic people are who live in the same city as I do! I know at the most four or five others, and this is a city of 1.7 million people, so something’s wrong here. The first group where I found a real opening, a real space and a vison compatible with mine, was Abraça [Portuguese for “Embrace”].
They found out about me and invited me to come get to know their organization, and that’s where I found everything I was looking for.
It was through Abraça that I ended up in the Conference on the Convention on the Rights of Persons with Disabilities. Alexandre, our president, recommended me to Erich Kofmel, of Autistic Minority International, who in turn recommended me to Lumos (the NGO started by J.K.
Rawlings, who’s someone I’m a huge fan of), which funded my trip to New York. The side event where I spoke was organized by GPcwd, Lumos, and UNICEF. I met so many incredible people during the conference that it’s hard to even cite all their names, each person being inspiring in a different way. I learned a lot through this experience, mainly about what I can do, what I’m capable of, you know? At various times, I started trembling, thinking I couldn’t keep going, so many unexpected things kept coming up.
My fiancé has been with me the whole time and giving me a lot of strength and courage to breathe deeply and take everything one step at a time. And I did it! I managed to do absolutely everything I wanted to do: I managed to give a talk, I managed to meet all the people I wanted to, I managed to participate as a listener in all the side events that interested me, and, even if I cried a little bit because of the stress, I kept going.
I didn’t even think I’d manage to do so. I can do a lot more than I thought I could, and, in realizing this, I have to recognize that it’s my moral obligation to work for the cause I decided to embrace. I already backed out of so many things before, the moment I ran into the first obstacle, you know? But not this time; this time I went all out! That’s what I learned here: how important this work is and how worthwhile it is!
A.K. – The topic this year was looking into the
future about the inclusion of all persons with disabilities. What is your view
of this future within the Brazilian context?
F.S. –
We still have a long road ahead of us, and it’s going to be a very rocky road,
very difficult, but we can already trace the path to take and make plans, and
that’s very important. We’ve got a lot of examples from outside the country
that can serve as our mirror, about what to do as well as what not to do, both
things being relevant. I think the greatest obstacle is with people’s
attitudes, but we have so many folks who are seriously committed to the cause
that I think that, no matter how difficult it is or how long it’ll take, we’re
going to get there. I believe in people a lot. CRPD is a very important tool in
this process, the laws that are already in effect, the regulations… each small
thing is a victory, but it’s clear that having this on paper is just the first
step, right? We need to make sure it gets put into practice.
A.K. –
How does autism fit into discussions about disability?
F.S. –
These days? In Brazil? Very timidly. In a lot of places, we’re still at the
stage of telling people that autism exists, that it’s not the same as
intellectual disability… we’re starting out, slowly, and claiming our space.
Unfortunately, that space is still controlled by parents, relatives, and
caretakers, so the autistic person still has very little voice here in Brazil…
well, not just in Brazil, right? But this question of control is really just
the beginning. We’ve got LOTS to do. Every time others remember to include us
as one of the types of disabilities, I’m happy. It’s such a small thing,
remembering that we exist, right? Even apart from knowing who we are, what we
need, and everything else, just the fact that the term “autism” (or ASD
[“Autism Spectrum Disorder”]) is included makes me happy, because I know that
this is the result of a lot of work and a lot of dedication.
A.K. –
Your talk concerned violence suffered by people with disabilities. How and why
are autistic persons victimized by violence? Do data on this exist in Brazil?
F.S. –
No, the data here in Brazil are very scarce. In fact, we even have problems
with getting people diagnosed, and if they don’t know they’re autistic, how are
they going to be counted? No, we’re still very behind in this regard. This is a
very personal opinion, but I believe that a great deal of the violence against
autistic people originates from the lack of acceptance of autism. To me, autism
is an expression of human diversity. Everybody is different, some are more
different. This “more different” is interpreted by a lot of people as a
disease, but I don’t agree, I don’t think we’re diseased.
We’re
just “more different” than the usual. The world isn’t set up for us, and that’s
where the deficiency lies: in the world’s lack of preparedness, so, as a
result, we need some extra help so we can live our lives. The violence
sometimes comes from within families, who think that any action that
hypothetically will “cure” autism is justified, whether it be some of those
bizarre alternative treatments (from MMS [“Miracle Mineral Solution”] to
lobotomies), excessive medication, intensive training so a child (or adult)
“looks normal,” “discipline” imposed in an attempt to “teach good behavior,” or
the institutionalization (internment) of people… even psychological violence,
rejection, attacks on someone’s self-esteem. We also see violence that comes
from ignorance, suffered outside the home, in the street, at school, at work.
And
finally, the question of vulnerability, because we have a certain difficulty in
detecting dangers, which other people don’t seem to have, especially when it
comes to other people’s bad intentions, and this certainly complicates things.
If we started to make a list of everything bad we see happening, each more
shocking than the other, we’d end up spending the whole day writing, seriously.
A.K. –
Did you attend any other speech by other autistic people? Are the demands being
made by autistic persons in other cultures the same or different from those of
Brazilian autistic persons?
F.S. –
No, I didn’t hear any other autistic person speak at the conference, but from
what I know, especially about the demands being made at the global level, we’re
all talking about the same thing, what we need is very similar! And realizing
this is really encouraging! Having exchanges and discussions with other groups
enriches our struggle a great deal.
A.K. –
What else would you like people to understand about what it means to have a
disability, and what would you like to see change in the world in this regard?
F.S. –
I would very much like people to understand that having a disability doesn’t
make someone incapable. The social model of disabilities is still unknown to
most people, it still needs to be absorbed. As soon as it is absorbed, I think
a lot of doors will begin to open and disabled people will start to have
opportunities… at school, in universities, in the job market. This is really
important for achieving autonomy.
A.K. –
The UN understands disabilities as being based on a social model, that is,
disabilities exist because the surroundings exclude them rather than because
the individual is “defective.” Are you optimistic about the future? Do you
think that society is making the effort to make the world more accessible to
everybody and to make this exclusion less and less common?
F.S. –
I think that society is seeing more requirements to make the world a more
accessible place, but we still have a huge barrier, which is making people
really care, to understand why it’s important, you know? This is something
that, for the time being, I see happening almost nowhere and, when I do see it,
I admit I’m surprised. I saw this happen in my university and it was really
great: they care a lot about doing everything possible to include me and
guarantee that I’d have all the support I needed. But this is an exception; I
think I was very lucky, since, in most places, it’s not like that, people only
do things they’re required to do.
When
we overcome this, everything will be easier, for sure. Yes, I’m an optimist,
but my optimism doesn’t come from society in general, but from disabled persons
I’ve met; I think they’re the ones who are going to change the world.
I
think that one of the ways we’ll achieve this is to make things more personal
(all right, this is an idea of mine, I don’t have any way to guarantee it, but
I really believe in it). How many disabled persons do you know? Almost one
quarter of the Brazilian population has some type of disability. The
other day I was thinking about this and realized that there are various people
in my family with handicaps. One of my grandfathers, now deceased, suffered
infant paralysis; the other hears very little. I remember one of my father’s
cousins (I think it was a cousin, it’s a big family, I never know) who is an
amputee, and another who is deaf.
Not
to mention the autistic persons; the only ones diagnosed are me and my sister,
but my father also is and I suspect others are too. How many of them call
themselves (or are called) disabled persons? I don’t know! But I have the
impression that when we start to use the terms correctly and tell people why
this is important for questions of accessibility and support, then people start
to understand and feel empathy. It’s different if you hear this from a total
stranger or if you read it on the Internet or watch it in a documentary… this
isn’t personal.
If
it’s a friend of yours who’s in need, if it’s someone in your family… the
weight is different. That’s where the value comes in of us talking about these
matters openly. I’m not saying it’s easy; at times, you just want to hide your
difficulties, since some of them are awkward, with others you’re sure no one
will understand. So why spend energy sharing this? To make it personal! To make
people think, that’s why. Several classmates at my university have been asking
me about autism and I’ve enjoyed talking a little about it to them; I think
it’s a very effective way to raise people’s awareness.
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