At What Point?

Filed Under (Acceptance, Inclusion, Joy, Research) by Estee on 14-11-2010

At what point do we stop participating in research studies? I think about this as I receive another request to do so with Adam. We’ve received many of these notices and requests over the years to participate in one research study or another — none of them very appealing to me.

Adam is eight. He began his life as any other infant and toddler. Then suddenly, at the age of 19 months, before he was two (!), he was diagnosed as autistic. Everything at that point changed in our family life, although Adam had never changed. Our views of him had changed by virtue of a label, a screen through which we now saw him. We spent time in doctor’s offices, with diagnosticians and therapists galore. Life has been nothing but a stream of experts and research trying to figure him out. As his mother, I’ve accompanied Adam on this journey, and even subjected him to this.

Although I’ve always been so inclined, and this is likely a natural progression for me, I feel as if I’m entering a period of trying to look at myself objectively as his parent and how I need to figure myself out. How have I managed, after all, with autism and the many things that life brings? I am becoming far less anxious about what Adam will be when he grows up to trying to figure out what will make us simply content in the day-to-day. The work we need to do should be less about fixing people than on creating an inclusive, welcoming communities.

After all, life is extremely fragile. The odds of being born are slimmer than we imagine. Nature has a way of aborting the “wrong combinations” of genes. Yet, there are so many fragile people who have usurped the odds and reached the point of being born. Who is to say that autism or any other disability in this sense, then, is “wrong?” Perhaps there is no real genetic “order,” and “normal,” is not one complete genetic sentence. It is a new way of looking at disability. It is a new way I can look at Adam who continues to overcome so many odds. Adam is here. He forced his way into the world and he not only survives — he thrives.

Today I can’t stop thinking about Adam’s quality of life, and what that means for him, not me, although the quality of mine seems to improve everytime I look at Adam and enjoy him. He must be taught, he will grow, and he will develop his own need for independence. No matter how severely disabled one is, the will to be so is strong in all of us, even when we need others to assist us in our daily lives. I’m reluctant to be a part of research studies as they are crafted right now — to subject Adam to batteries of tests and “experts,” even if some of these studies may be valuable. I know there are some disorders that may benefit from studies, although my thoughts are still inconclusive on this. Still, I do not want Adam to view his life as if he is living in a sort-of test tube. I do not want to get angry at people who will view, by virtue of their research role, on-looker and so forth, Adam as a subject or a pathology. Hey, he made it after all. He deserves to be here. Researchers should be throwing rose petals at his feet! (Hmmm, that’s an idea. Celebrate life. Novel.)

So I don’t participate. We don’t need false expectations and I don’t need the pain of prejudice, that is, that subtle suggestion that we should be doing something to change Adam and make him better. I am much more interested in, not the genetic code, those “incomplete genetic sentences,” if you will. I’m interested in book of life we are writing — fragmented to full sentences, idiosyncratic spelling, words, noises and all. We are born to give back to the world, to contribute, and to find the beauty in our lives. As I grow a little older, I no longer see the value in competition, in being the best. I see the necessity of working together in creating a more just world.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.