The Robin In The Window

There is a robin that keeps banging into our window. For nearly a month now, it must be, but I’ve really noticed it lately. I thought the robin would be gone by now, failing to get into the house. Perhaps, I thought, he sees something he wants to get to in here, or more eerily, as Margaret Laurence once said in her novels “a bird in the house means death in the house.” Is some kind of death knocking at our door?

I heed "hidden" messages.

I am beginning to get worried about the bird. He seems no less affected by his beak-banging. I considered that something might be “wrong” with the bird. But knowing better, I turned to google to look up the meaning of the behaviour.

Birds, particularly robins, repeatedly bang into windows because they see their reflection. They are trying to fight the “other” bird for the territory. It’s perfectly understandable given the bird’s perspective. And then, I came to think about the irony of my interpretation: of fighting against our own shadows and came across the term egophrenia as I found written by Paul Levy: [It is the ] ‘ME disorder,’ for short. If ME disorder goes unrecognized and is not contained, it can be very destructive, particularly if the person is in a position of power." (Please note that I do not agree with how he makes references to "illnesses" in his article, but the over-riding idea of it is interesting in the context I have quoted here).

Apparently President Bush is egophrenic. I would venture a guess that he is somewhat delusional, and a collective manifestation of the way North Americans have come to think about their place in the world. We see it in everything, including autism advocacy. We have come to live the big lie, chasing the perceived enemy, that which lies outside of ourselves because we no longer want to take responsibility for what we do and how we contribute to injustice and the world in which we live. Autism Speaks is egophrenic and not self-reflective in the least at the moment. It is but one example.

We fight what we create. We fight ourselves, as the robin does its own reflection. If a polemic gets created, it does so with the creation of an “us” and a “them.” Fighting autism, fighting in the name of getting children services by creating an evil which is the other– the evil which is our own true reflection.

The robin reminds me of pushing myself constantly to avoid kitsch and rhetoric -- to consider myself as contributing to the polemic. The robin reminds me that what is out there is me. It is us.

Now what do I have to do to change it? What about all of us?

Being an Unperson in Canada's Autism Advocacy

May I direct people back to Amanda's insightful posts and videos on "Being An Unperson" as parent advocates and Mr. Eugene Levy march on without autistic people at all:

Autism: A Call for A National Funding Strategy

Today in the Globe and Mail, Brenda Deskin's son Michael, autistic, is a cousin to Eugene Levy. Levy, who has, according to the article, "only met Michael for the first time yesterday," decided that "this is a good fight here." He is holding a press conference in Toronto today to plea the government for ABA to be funded under medicare. He says in the article, "it's breaking families -- the emotional trauma and expense alone." Is this sounding tired and familiar?

Dr. Wendy Roberts is in support of this ABA movement and is quoted as saying "she has seen grandparents lost their homes and spend $80,000 a year for treatment." Not sure where Dr. Roberts stands these days since I had my last meeting with her. On the one hand, she wants to celebrate autism with art shows, on the other, she wants to treat autism with a treatment offensive to autistics. This desire to please everyone isn't accomplishing a thing. What we need FIRST AND FOREMOST to be just society, is to include autistic people in this dialogue. There are so many and we have them at TAAProject.

The article also starts with the line that autism "is no laughing matter," relentlessly and unethically making comparisons of autism to cancer. Hayley Mick, the reporter begins the article thus:

"When Canadian comedian Eugene Levy things about autism he pictures a scrawny kid. The kid is dwafed by other kids, who have names like cancer and diabetes and are protected by weathy foundations. And when they need treatment, those kids are swept into the loving arms of Canada's health care system."

Adam...scrawny? Dwarfed? Afflicted with a disease akin to cancer?? HOW DARE YOU IMPOSE YOUR SORRY "ADVOCACY" and metaphors to paint a pathetic picture of my beautiful child! How dare you create such a scary picture that it becomes increasingly difficult for our children to be treated as children and not someone's "client" or "project." And if they get included at all, it seems like a miracle.

Once again, Deskin and her partners completely ignore what the autistic community has to say -- namely autistics and the many parents of adult autistic children who are tired and offended by her constant referencing of autism as nightmare. If we are living a nightmare, she is perpetuating it through a basic violation of excluding autistics from her brand of autism advocacy.

She does not include any autistics -- at all. It is clear that she thinks that they have no right to be in "her fight." She does this for herself, not for autistic people.

She does not include other parents who do not want ABA for their children as the sole choice of education for their children. Deskin is trying to legislate what is right for others when we do not feel it is right for us.

She ignores the fact that Lovaas, to which she lovingly aligns herself in reference to ABA treatment, never apologized for his use of aversives. She ignores how that infamous 47% "success rate" was actually achieved. She is factless for her own convenience. For quick references that will lead you to more reading, read: www.autismcrisis.blogspot.com; No Autistics Allowed and Dr. Gernsbacher's paper: "Is One Style of Behavioural Treatment `Scientifically Proven?'"

She ignores an immense disability rights movement, to which autistics belong and the fact that the disability community in North America makes up the largest minority group who are TELLING US ALL what it is like to live with a disability, and what they need.

So, does she serve the greater community? Does she take into account that we want our children to be included, to have lives filled with joy, to not be confronted by stigma and stress that she continues to perpetuate, to have access, to live in safe environments, free from maltreatment that ABA has been at fault for? There is no such thing as "good ABA and bad ABA." It is time to stop using the term as a shorthand for a multitude of services, and acknowledge that there is a toolbox out there with many different tools that we dip into that is unique to each child. Above all, we need to acknowledge that autistic people are people first. They deserve help with our utmost respect -- not sensationalized propoganda that draws on heartstrings and elicits pity.

Families deserve to be supported, they deserve to be empowered to make their own choices for therapy and education. They deserve access. We need a strategy that encompasses all of our needs. And if Brenda Deskin wants her ABA therapy, let her have it. Just don't make us have to take it. Let's build a tool box that we construct by:

1) including autistic people in helping us understand and build appropriate education and self-help skills programs by revealing their early experiences;
2) build on what was successful for them;
3) build an anti-ableism strategy so that autistics and other disabled individuals have access and acceptance;
4) include all parents to work alongside autistics to develop generally accepted multi-model methods that honour each individual's learning style (this could be OT, SLP, Play, and one-to-one education/assistance as well as family appointed shadows and/or service dogs, assistive technologies, vocational training, autistic mentors, humane and supportive community living environments, and more)

Overall, let us work together to state that YES, our kids deserve more and we need to focus on our to support autistic people and their families. Our kids are great and have lots of potential given the patience of others and a change of attitude in terms of the fact that disability is part of human experience.

In other words, we need to get away from this manner of advocating -- that excludes the very people it seeks to "support" -- and talk about what autistic people really want and need by including them.

Deskin, et al -- are you ready for a reality check? It's not all about you. Most of us are coming out of the dark ages. Will you decide to stay there? If you do, please don't drag the public back into those days where the disabled weren't treated as human at all. Having said that, I do hope to include everyone in much healthier strategy that includes autistic people in developing.

I'm sorry, Mr. Levy, that you have been dragged into this "living nightmare" of Deskin's "advocacy." I'm certain had you really done "your homework" beyond Deskin's propoganda, you would see that many autistic people and families find this method of "advocacy" and this one-size-fits-all approach, drenched in human rights violations and exclusion of the very people they seek to "support," is not the way we all want to go.