Estée Klar » Politics

Terminal Fates

Estee — Mon, 29 Nov 2010 23:23:58 +0000

“You can’t say your child is great,” I was told when looking into services for Adam. As part of our growing process, we have to know what is available to us. I was discussing how Adam has many challenges and is also:

-affable
-affectionate
-likes to be social but has difficulty at times…

“He sounds great,” interrupted the woman I was speaking to on the telephone who had asked me what Adam was like. “Just so you know, I have a child with Down’s syndrome. It’s a drag to have to paint the worst scenario, but in order to get services, you just have to.”

Why subjugate our wonderful children, young and old, to terminal fates? You remember — the ones “worse than cancer.” Why must we have to paint a dimsal picture, or view people with disabilities as something horrible and devastating to us and society? This is the very reason why we’ve had such misrepresentation that hurts autistic people, and why parents are literally forced to represent ourselves as desperate, our children as hopeless without certain types of services. People with challenges have a right to support. At the same time, we have a right to love and cherish our children and believe in them. We have a right to think our children our terrific, great, a joy, even. It’s not sugar coating anything (back in the day, I was accused of this). My child needs lots of support. I do not wish to embellish anything. I simply want to tell people what he needs as his inherent right. As it is, the services and supports for autistic people here in Ontario are neither diverse nor robust.

If there is a thing called fate, I think it’s terminal for all of us, isn’t it? I sure wouldn’t call autism a fate worse than cancer and to be honest, I find it really hard to speak about my son in a way that I find demeaning to him. There are facts, and there are exaggerations. We all want to make the best of the lives we have, and so we should — with the support we need, and the love in our hearts that we just need to express.

What is Justice and the Democratic Debate?

Estee — Tue, 08 Jun 2010 17:07:54 +0000

This lecture on TED.com by Michael Sandel (Harvard) constructs an argument using this case of Casey Martin and his need for accommodation on the golf course. He suggests that without engaging our moral convictions in a constructive argument, we are doing ourselves a disservice. In the autism sphere, it is very much time for these discussions where “engagement” has become very much like that “ideological food fight.” Some voices are stronger, indeed and others are downright nasty and others still use false facts to present a case. Yet, this is no time to back away. It’s time to think about how to engage ethically in the autism debate.

What is justice, Sandel asks his audience? Like Aristotle, Sandel agrees that justice cannot be determined without an understanding of the following:

1) What abilities we recognize as worthy of honour and recognition and,
2) the purpose of our social institutions.

It seems to me that these are, in fact, the essential questions that we can ask ourselves as we discuss and debate the bigger questions like “what is autism?” and “what kinds of help do autistics need to contribute to society?” The question pertinent here, of course, is how and if we regard autistic individuals as worthy and how we prove that we believe it.

Miraculous or Naive?

Estee — Mon, 24 May 2010 15:59:53 +0000

It is said that one should write something that they would like to read. In those early autism years, as I was in that period of coalescing my arguments and thoughts about autism, I have enjoyed writing about Adam, motherhood, and our “journey.” There is a sense of therapy to writing and that can be beneficial for many people undergoing a similar situation. Writing can help us transcend the feeling that we are “all alone.” Yet I have the feeling after being a few years in this, that filtering autism down to miracles and gifts as well as horrors and tragedies has just become naïve. It’s time for all of us to up the ante (I am turning the finger towards myself here).

There is no new take these days on writing an autism and this in and of itself seems to me that either I’ve become over-saturated with the type of material, or I’ve simply reached a new parenting stage and where it takes me with writing here, I am not yet sure. I have tried to post a few interesting presentations on the blog the past couple of weeks. There are so many performances and exhibitions, and art is a segue to complex ideas often then used and analysed also by science as much as science can influence art. Of autistic performance and exhibition, please don’t label them as “miracles.”

I’m fatigued by references to miracles. Autistic achievement, as is discussed so often here on the blogs, is so often referenced as gifted or miraculous. There are no miracles. There is only what we wish to believe.

We’ve noted what a detriment to the autistic community such stereotyping can be. Even if it’s true that autistic thinking is different, and of benefit to our society in many ways, this is no reason to call it gifted or a “miracle.” When it comes to a play, or an autistic child typing, or a group of autistic children performing for an audience, I’m really taken aback at references to the achievements being “miracles.” However, if we are referring to all of us as being “miracles,” I sort of get that — I get that embrace of the miraculous state we call human. Miracles are a short-cut answer and resolution to that which is unresolvable. Try to tie it up with a convenient conclusion, and we will all fail.

Acceptance is as acceptance does, and in all likelihood, the name is too simple while embracing everything. “Simplicity embraces exactly the right details, the right difficulties, the right complexity,” but it also requires am effort in learning, observing, studying and yes, striving to argue well here in this contentious autism community. Acceptance is not simple. Autistic achievement is not a miracle, although it has been so unrecognized in human history that it is not surprising that we have labeled it as such. This is humanity we’re talking about. It’s messy, difficult, wonderful, full of frustration, anguish and yes, joyful.

And this may be the only miracle.