I Define Myself, by Amy Sequenzia
I Define Myself.
Not only that, I am also the one who plans my own future.
That should not be something that needs remembering. I am, after all, a human being, I have dreams and aspirations, I am discovering myself every day.
I also have friends who help me with all kinds of support I need. They are available at all times, physically and emotionally, near and everywhere. My friends believe in me. They support me because they respect me.
I am an Autistic activist, and according to my friends, I am quite awesome.
As I said, I define myself. I am a woman, recently out and still discovering my identity as a neuroqueer, definitely Autistic, proud activist (I use identity-first language. My autism is inseparable from me - thank goodness!)
Some people have a hard time understanding this. How can I be proud of being Autistic and thankful for it? The answer is simple: I am who I am and if I cannot value myself, nobody else will. Besides, I don't know how to not be me. Would you know how to not be you just because a neuromajority does not like or understand you?
What I am not, is a functioning label. All my life I have been said to be "low-functioning". I refuse this label. Not because I am somehow "afraid" of not looking "good" (I know myself very, very well) but because the label does not make sense. It is used by people to grade me, to point out my deficits; or it is used by some people to separate themselves, or their children, from me, because the supports I need are more visible. They think that by using "high-functioning" they are somehow superior or better than me.
Many of my friends who are said to be "high-functioning" also reject the label. They also have difficulties and are dismissed as just quirky or "almost normal". This is also not allowing them to be themselves.
It is confusing for some people mostly because I am non-speaking, I cannot do the so-called "simple things" by myself, I am not safe if left alone. People tend to think I suffer because I don't talk, and they tend to pity me.
I don't suffer and I don't want to talk. I also refuse to be pitied. I do want to be heard and to be respected.
As a child, I was called names and dismissed as "not home" (a doctor's assessment). As a teenager, even though I had learnt how to type, I was still dismissed as "not smart" and "without human dignity" (another doctor's official assessment). This happened because I am Autistic, because I am disabled, because my body acts rebelliously sometimes, because I also have cerebral palsy and epilepsy (something some people insist is part of autism. It is not)
The conclusion drawn from doctors, teachers, and almost everyone else was that I couldn't possibly be smart, or of "normal intelligence", and happiness would be something elusive, maybe a little bit of it with a lot of prayer (again, a doctor's words) and if I could be left alone in my "little world".
Wrong conclusion. My world is not "little" and I obviously experience all the emotions any other human being does. As for having an intellectual disability, I taught myself how to read at a very young age, but even if I am intellectually disabled, I still have value, I demand to be respected, I am a person. As for my autism, if you could see and feel words like I do, you would want a piece of it too.
Sometimes being autistic is hard, but it is not devastating. My life is not tragic but the way autistics are treated is. We are not burdens, but we are burdened with the lack of acceptance.
We are human beings, so we are not immune from hardships. Being Autistic Happy does not mean living in denial. It means knowing how to value ourselves, and work hard on the things we want to improve. Notice that I said "we want". Because being happy, autistic or not, also means the right to exercise self-determination.
One thing we need from non-autistics is respect. If we are not forced to look or act "less-autistic", we can go after our happiness with confidence. This is true for the young ones to. They should be allowed to be themselves, safe and respected.
I said I define myself. I am autistic.
I am an activist and I fight for the rights of my community, no matter how many deficits some people want to pin on me. I am a human being and my rights do not depend on perceptions of controlling naysayers.
I can already hear people saying that I only feel proud and happy because I have supports and people helping me. It is true but it wasn't always like that. I am not lucky because I have these supports. I am lucky because I met people who saw my worth and understood that I already had a right to be respected. Once a few people saw me as a whole person, my confidence grew and today I fight for autism acceptance. If ALL autistics are valued, supports will not be something we have to fight so hard for.
Self-determination is one of the things that allow me to plan my future. I know what I want and I know that it is my right to be "non-compliant" (a term people who like to control us like to use). I can say what I want, make decisions and live with the consequences. I can also recognize when I need guidance or another advocate by my side, when I need a trusted friend. This does not mean that the final word won't be mine.
The way to self-determination and to self-identity is not an easy one. That is one reason why we must be presumed to be competent. This means allowing us to grow - mistakes, set backs and disappointments included. But they should be OUR mistakes, OUR disappointments.
I can see why many parents struggle between presuming competence and overprotecting their children. I can see this happening especially when the autistic person has trouble communicating in a way most people understand, and when the autistic person needs more extensive supports.
But this should not be a reason for supporting the status quo that denies us choices and a voice, that segregates us in the name of safety and companionship. Actually, it should be a reason to fight against the status quo. We can only be safe and a real part of society if we are free to go wherever we want, free to connect, free to participate. And if we need a lot of help, this is even more important: help is not a dirty word. Our rights and safety depend, in large part, of being visible and included.
I define myself and I plan my future. I am a person and I have rights, just like you. Your rights are not more important than mine because no one person has more value than another person.
Respect should not be selective.
Amy Sequenzia is a non-speaking Autistic activist, writer and poet. She has presented in several conferences in the US and Canada. She is part of the Board of Directors of the Florida Alliance for Assistive Services and Technology (FAAST) and the Autism National Committee (AutCom). She blogs for Ollibean and the Autism Women's Network. Links to all her published articles can be found on her blog Non Speaking Autistic Speaking (http://nonspeakingautisticspeaking.blogspot.com)
*The title is a quote from Autistic self-advocate Henry Frost