On disability

Namine has physical therapy.

She works on a variety of things: from increasing her shoulder range to crossing center, from walking forward and backward to stepping from side to side. Namine has formed a close bond – a kinship, if not perhaps a friendship – with her many therapists. She works hard for them (most of the time), and she proves every day to them – and of course to us – that she has not come so far without an iron will.

An acquaintance of mine is still under the impression that because Namine is disabled, she is unable to do things – to do nearly anything. We know people who talk about Namine as though she will never be a real person – she cannot (whether it’s actually true or not, it is true in their minds) live life with the same experiences they themselves have, so somehow her life will somehow always be less. But Namine has proven what she can do, disabilities and all.

“Disabilities” – I’ll call them that because there’s no better word. The terms “differently abled” and “handi-capable” secretly (or not so secretly) annoy me. Terms are merely that – words. I’ll not focus on how to refer to how my daughter is different. She is determined and self-enabled (oh look, another bon mot) because she has no concept of being “disabled” – and that’s because Jessica and I bring no attention to it. She is simply the way she is; she knows no other way, and we are supportive of her no matter what. We are her number one admirers, advocates and cheerleaders. And no matter what, we’ll always celebrate who she is and what she can do.

5 responses

  1. Steve aka Dadgineer Avatar
    Steve aka Dadgineer

    I bounce around in my head of seeing O as just a normal kid, other days his differences glare out at me. Either way, it is what he is, just like it is who Namine is. People focus to much on what they can’t do, or they expect right away that they cannot do something. Almost every new teacher/therapist/whoever says the same thing, “Oh I didn’t expect he would be able to do that” or “I didn’t realize he was that smart.” Really? How about you don’t assume anything and just take the child for who they are. I could just go on and on about this subject, but I will be quiet, for now.

  2. There was a few years ago a campaign about autism to counter the propaganda of groups like “Autism Speaks”. In this campaign, a person was to send in a picture of themselves with a caption along the lines of “1 in 100 adults may have autism. Don’t panic, it has always been this way. Certain therapies have been shown to help us. One of these is called:” and then put in a non-therapy concept that is helpful (like “respect”). I didn’t get things together in time to submit mine, but I had been planning to post a picture of me doing something autistic people aren’t supposed to be able to do (dancing or working spring to mind) and my caption would have ended “letting us tell you what we can do instead of trying to tell us.” You’ve illustrated that concept beautifully.

  3. Jon Eiche Avatar

    I think sometimes we poor humans are our own worst enemies. We classify and categorize as a way to deal with a world that would otherwise be just a jumble of chaos, and that can be helpful, but when dealing with other people, we start with our “sorting bins” firmly in place. This seems especially true when dealing with those whom we know least, so right away we put up barriers that make it harder to really know the person as the individual they are.

    I like what you said once (probably more than once): Namine’s disabilities describe her (at least partly), but they don’t define her.

    When I was in college, I took a course on the films of Akira Kurasawa. With the first movie we saw, somewhere in my mind I registered the overriding observation, “Wow, everybody in this film is Japanese.” By the end of the semester, nobody even looked Japanese to me anymore; they just looked like people. I think familiarity is the main way we break down our own, and others’, reflex to categorize. I don’t think of Namine as a certain kind of person, but as an individual whom I know well and love dearly.

    I like the commercial that used to run in which Tony Danza said, “How do you treat a person with a disability? Like a person.” And as we help those with whom we come in contact to get to know all “persons” better, at least some of them will use those experiences to break apart their little compartments in favor of one big one: human beings.

  4. Came across this article. Makes a lot of the same points you were making. http://autistichoya.blogspot.com/2011/11/whats-wrong-with-disability-awareness.html

  5. Without a doubt, I think the most interesting thing about disability is that impression–that a disabled life is a lesser life. Meanwhile, people go along with more or less money, different genders, and ages, and we don’t question their value. Only disability seems to inspire in people the belief that different is somehow less.

Leave a Reply to Steve aka Dadgineer Cancel reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Related