Violent Protests in Toronto

Filed Under (Activism) by Estee on 27-06-2010

I want to take the opportunity on my blog to express the disgust I have for the violent protestors in my beloved city during the G20. Damaging businesses and hurting people does nothing to prove their point about poverty except to cost us more money. I hope the hoodlums pay a large price for the damage they have caused and the point that they have made — which is no point at all.

I was in Yorkville last night when police told us to get out as rumour had it that protesters were on their way. It was probably one of the more anxious moments of my life as I remembered the Seattle tragedy.

John Mayer sings a good song about Belief. It’s time to listen again. I recommend listening to the song while playing the videos of the protests underneath.

Toilet Humour

Filed Under (Humour, Joy) by Estee on 21-06-2010

You have to hand it to kids. Just when I forget to laugh, Adam comes up with something to make me laugh about.

Like all boys his age, the proverbial fart joke is something hilarious. What makes the fart so darn funny? I remember my step-children, now all adults, in the backseat of our Durango farting and laughing. “Whoever smelt it, dealt it!” They would giggle, sounding like hyenas in the back seat between whines and squeals, between farts and trying to pinch and smack each other. Of course I laughed. The child’s giggle is infectious. The fart is eternally funny. It takes pretense back down to the level of human.

I was reminded of all this — what seems like eons ago now — when Adam farted this morning before school. “Oops you farted,” I commented and his giggle, the one he never wants to end, ensued.

I suppose I’m writing this not just because farts are funny, but because such toilet humour does not get lost on Adam — the autistic child who supposedly doesn’t get humour. It seems so incredible to me now these vast generalizations are so not applicable in the autistic people I meet.

While I’m not sure what this really says about me, tell me really if this doesn’t make you laugh. It makes Adam laugh!

Click for fart sounds here.

Jump With Me Higher!

Filed Under (Adam, Joy) by Estee on 15-06-2010

This is the phrase that Adam begs of us when he wants to jump.

Here is a video of Adam that his dad taped which may just put a smile on your face as much as it does mine. This is the kind of exhilaration I think we all need at least once a day!

I haven’t put music to it yet. I was thinking of the song When You’re Smilin’ by Louis Armstrong. Then again, I sort of like it without any music at all.

For What It’s Worth

Filed Under (Adam, Family, Joy, Single Parenthood) by Estee on 13-06-2010

I have to admit that I’m adjusting to my new role, still, as single mother. There are lovely days, like yesterday, when I want to spend my time with Adam. We awaited a thunderstorm that never came, but watched Disney’s Mulan anyway — a movie Adam has not yet seen. Adam is more interested in watching movies from start to finish now that his attention is stronger, his awareness keen. In the “early days,” Adam could only sit still for about ten or so minutes and movies were simply not possible. These are rather nice days, like the time today we spent walking around the Scarborough Bluffs, listening to the waves gently swell upon the shore and watching the geese fly off as elegantly as immaculately set-up dominoes. Adam lead me to the shore-side restaurant and we ate together. I’ll admit that sometimes I miss having someone to share this with us, and then again I cherish every moment now because I have learned that life changes in a moment.

Sometimes we spend our afternoons by the pool and he is content in what I have called his nest (see picture) — I have this chair outside even though the rain is determined to wither the wicker away. He will curl up after a swim and stare at the maple leaves hanging above him in the sunlight, reluctant to depart at my declarations that he must be getting cold and it’s time for a hot shower. No, he prefers to cuddle up and listen to the birds. I don’t blame him — it was the same chair I healed in after surgeries a couple of years ago and I dragged it outside because it’s far better to heal outside than in.

As his treat, I purchased Adam a new nest for his room today so I could put it in the corner where he has come to read his books. I placed it under a canopy I also created for him with twinkling lights when I set up his room in his new house. Like all things these days, it was over-wrapped. We arrived home and I was determined to get this simple task done for him. He helped me lug a bag inside and I asked him to play on his own nearby. He wanted to eat, he wanted to do something else — he wanted my help.

“Adam, mommy doesn’t have any help so you have to be my helper today,” I said. New single-mother talk, I’m thinking. But I’m also thinking how frustrated I am over trying to do everything as quickly as possible, wishing right now, in this moment, that I had someone to do it for me so I can turn to Adam instead.

“Just wait, Adam,” I say with irritated breath, unraveling yards of ties and cardboard with an inappropriate pair of kiddie scissors that were handy. It’s me that I realize I’m telling to wait, though. Adam is doing just fine.

I struggle to carry the big hoop of the chair to the upstairs and set the chair up, going as fast as I can.

“Come see, Adam. Come upstairs,” I am now asking after I just told him to stay put. I imagine my son thinks I’m nuts. He obliges me and goes into the chair and curls into it contentedly reading his series of I Spy phonics books, reminding me that “it’s not a horse; it’s a duck.” His language skills have improved. He talks in more sentences, in particular to tell me everything he sees. I suck in some air and sit on the edge of his bed, enjoying him enjoying the chair. I like to watch Adam happy and calm. Heck, I like to experience myself happy and calm.

I know I have to prepare dinner. The grandparents are coming soon, Adam was searching hi and lo in my kitchen for something, as usual, to eat. It’s a wonder the boy is so slim with all he eats.

I am breathing more calmly thinking that I know I can’t do everything at every moment I want to. I know that something’s gotta give; of some things I must let go at certain moments, and maybe even for life. I am still in that growing phase of learning to be on my own as a parent. Although life isn’t bad, it isn’t the same when you have to do everything yourself. I am learning, still, after two years to be okay with this.

While I get a lot of snuggles from Adam and a lot of kisses too, I realized that I don’t get a lot of “how are you’s?” from anyone, really. I don’t get the “how are you really doing?” kind of caring-talk. I suddenly realize it when Adam pops out of his room and hollers from the top of the stairs, “I wub you!”

“What?” I ask loudly as I am in the kitchen preparing food.

“I wub you mum!” All his words were spoken with force but with the same intonation. Then, I hear him go back into the room and shut the door.

I am stunned. I think Adam is saying thank you for the chair, for his little nest. I think he totally knows how much I love him.

For what it’s worth, I needed that.

More Than Their Genes

Filed Under (Activism, Advocacy) by Estee on 12-06-2010

Here is the Letter To The Editor I wrote that made the Globe and Mail today regarding Carolyn Abraham’s article on autism and genetic testing (see also previous post). The letter was of course edited a few times and one can never know what will be omitted.

I do not want to suggest that people with more “profound” handicaps are not equally valued as other people. When I read the version this morning, I wanted to ensure at least here I could make that clarification. Also, I had suggested that there is no scientific evidence to prove that early behavioural interventions (as early as infancy!) remedies autism –that part was cut. That very idea that we should diagnose and detect earlier in order to “fix the problem,” was a very important point that did not make printing.

I had noted that with our views overall towards autism as a series of “fouled up genes” and “hiccups” in the human DNA, we are already basing the science on a premise of prejudice. At least, we all know that this is the very real possibility in terms of how that science will be used.

Has Our Autism Doomsday Arrived?

Filed Under (Activism, Advocacy, autism, Discrimination, Ethics, Research) by Estee on 10-06-2010

We knew there were genetic studies on autism. We knew this was coming. Perhaps a better title for this would be “for every downside, there is an upside.” This is could be very true about the Human Genome Project.

Today Carolyn Abraham reports on the front page of The Globe and Mail the recent publicity surrounding the findings of an international group of scientists trying to uncover the genes that comprise autism. Throughout the article, Ms. Abraham describes autism and it’s “genes” as a hiccup — “genes fouled up by long stretches of missing or duplicated pieces of DNA.”

Doomsday is coming, or it could come. I know that there are parents who dread having a child with any disability. I understand that no two families are alike in the way they approach the subject. Yet there are families who do cope well; those of us who value the children we have and balk at the concept that humanity can be distilled into DNA. Of course, it can in a sense, but the complexities of being human cannot. I could tear this article apart. I am utterly offended by it, if I am to admit my leanings. I cringe at the thought of my son reading that he is a “hiccup” or a series of “fouled up genes.”

Just as important is the idea, the very scary idea I might add, that we can terminate an autistic pregnancy. The study co-author Peter Szatmari admits that the prospect of the commercial test that will prematurely reach the market “makes me nervous. I don’t think we have the science yet to nail it down. This isn’t one gene but a profile of genes, a pattern of susceptibility, not cause.” As reporter Abraham writes, “in the direct market age, the market rarely waits for more research.” In other words, in a world that hardly understands disability, how disabled people live and feel, disabled pride, autistic pride, and rarely hears or listens to the voices of autistic people, parents may rush to pick up a screening test. Without this knowledge, what do you think is going to happen?

Then it occurred to me: Adam’s parents, that’s right — his father and myself and his entire family — would likely have many of those genes — those “fouled up” ones in one way shape or form. Maybe this would mean I would not be here, his dad, his grandparents, his Bubby or his Zaida. “In all,” says the Globe article, “the study spearheaded by post-doctoral fellow Dalila Pinto at Sick Kids, identified more than 100 genes affected in the people with autism, many of them forming a part of a network that governs how brain cells grow and talk to each other.” Perhaps this comprehensive network is part of all of us that make up autism. Autism is an accentuation of our very human traits.

As far as I’m concerned, this is doomsday approaching fast IF the dialogue about how we use science — how we implement knowledge — better be linked with a dialogue about not only what it means to be human, but the very right to be disabled, autistic and yes, what can be wonderful about that in our world that has been taught to fear disability. There is a social aspect here that is running the show and we are a highly biased society against those with neurological differences and further, we write about autism as if it’s the worst thing on the planet.

In our family, and in many others that I know of, it is not. Premature reporting of scientific findings without a balanced argument (or even acknowledgment that there are people who prefer to be autistic) of this kind runs a very high risk.

Another discussion that may help our own:

The article referred to in Nature here.

What is Justice and the Democratic Debate?

Filed Under (Activism, Advocacy, autism, Law, Politics) by Estee on 08-06-2010

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.

ads
ads
ads
ads

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.