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.
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.
- The full text of Fernanda’s speech at the UN can be read here.
FERNANDA SANTANA, 26 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.
CATHERINE V. HOWARD is a Portuguese-to-English translator at TranslationCraft Services as well as an Amazon anthropologist and researcher of endangered languages. Growing up with an autistic cousin, she knows the challenges that autistic people face in a world that has not yet learned to adapt to neurodiversity. She is enthusiastic about how autistic people are now assuming control of their own self-advocacy and teaching the rest of us more about the myriad of ways of being human.