Special needs? Or disabled?

Maitê foto 2

*A versão desse texto em português está na postagem anterior.

A common term these days is “empowerment”.  We talk about empowerment for race, gender, and sexual orientation, but I’m going to consider yet another kind – empowerment for the disabled.

Disabled, yes, and not special needs, exceptional, blue-eyed, or any other euphemism society likes to use.

I confess that I do find it difficult to admit that my little girl has a intellectual disability, and that it’s genetic, named Kleefstra Syndrome. It’s much easier for me to say that “I have a special needs child.” That’s easier on my heart – but it’s also a barrier to facing and owning this condition, which is hers but mine as well.  Being mentally disabled doesn’t mean having no intelligence at all, but having a different way, a different rhythm of learning.

Someone with a visual disability learns to see through their other senses.  Someone with no arms learns to use their feet to function in amazing ways.  People with intellectual disabilities must also develop strategies to adapt to the world, and when they are given the chance to learn, they will surprise you.

What people with disabilities want is to be recognized for their individuality, just as they are, with no disguises – acceptance, and thus, empowerment. There are some very organized groups, such as those formed by people with Down Syndrome, who have held campaigns to show that such people deserve respect, opportunities, recognition – exactly as they are.

So you say you agree with all this and yes, we are all different and we all deserve respect.  However, in practice, this is counteracted by the idea that we all have of what is “normal”.  Your concept of “normal” is what defines you (and all of us) morally: it’s “normal” for marriage to be between a man and a woman; it’s “normal” for girls to wear pink; it’s “normal” to put disabled people in special schools keeping them apart from typical children, and for them to be forever dependent on others.  It’s “normal” to enter an office and not run into anybody with any kind of disability, and many competent people have enormous difficulty getting a job just because they have a physical disability of some kind.

We don’t know how to deal with autistic people, for example; we don’t know how to act with a intellectual disabled person, or somebody with psychological problems, or with a visual disability.  We feel awkward, we don’t know what to say or how to teach our children to behave.  The sidewalks aren’t designed to allow people whose mobility is restricted to get around freely.  Our cities and our entire society are completely hostile to all these people.

Know why?

Because, until recently, all these folks were locked up, hidden from view. Now you’re going to say: “Come on, that was a long time ago!  It’s different today!”

Did you know that, in 1911 in the USA, they passed a law that said basically that disabled individuals were not allowed to be out in public?  That it was immoral?  A person with Down Syndrome would be “offensive” to normal people if they dared to show themselves or tried to have a normal life.

So then you’ll say “Well, but that was in the USA, of course it was like that there!” But you’d be wrong, because this was the mentality of everybody in those days and likely all over, even here (in Brazil).  That law was overturned only in 1973 – that is, our parents and grandparents were raised and educated in a society that held strongly to these ideas.  They passed that on to us, and we in turn are educating the next generation. (Andrew Solomon. “Far From The Tree”)

Back then, people were called “mongoloids” or “mentally retarded” and in fact this latter term is still what is used by the medical profession – according to a specialist, that’s what my little girl has: mental retardation.  There’s even a diagnostic code for it.

Today, I see it as my duty to be deeply resolute and empowered by this human condition of disability, so that I can teach my little girl that she is disabled and it is nothing to be ashamed of.  That she has some needs that are different from many children her age, but that, at the same time, she also has the same needs they have: she needs to be loved, to learn, to go to school; she needs to have friends, to play, to go to parks and playgrounds; and all the other things children her age need.

So let’s try a bit more to have some dialogue, to hear what these disabled people have to tell us.

My dream is to see all kinds of disabled folks all over the city (“occupying the city” – a current subject in the Sao Paulo megalopolis). How many disabled people do you see in your everyday life?  At the bakery, at the bank, at the gym, at the movies, on the subway?  I dream of a day when my daughter can say goodbye to me at the door and go off to the bus stop by herself, just like people with visual disabilities, or in wheelchairs, or with autism. A city that’s more accessible, more inclusive.  Utopia?  But without this, how will we even begin to undo what’s been done to these people?

*A special thanks to Mary Leigh Burke, a dear friend of my family, who lives in Oregon but  lived with my grandparents in Brazil long ago. If it wasn’t for her  this whole text wouldn’t be translated.

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