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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Sunday, December 16, 2007


Pity -- It's 100% Curable

Talking about fear-marketing at various conferences throughout 2007 and it seems that the work is never over (I will be speaking at the University of San Diego in January for those who wish to attend). As the year closes, I'd like to focus in 2008 on not just what is so destructive for individuals by marketing fear and how that leads to MORE stigma, but to focus on what disabled people do so well and what they DO contribute to society.

This will be my 2008 theme -- making such comparisons and critical investigations. My current studies and papers include a look into disabled art and performance and how it has criticized the "normalized gaze," and our popular notions of cure. I will also continue to look at how organizations "market" autism and disability -- be it overly positive as to glaze over the issues disabled people face and so make the so-called "typical" society feel better, to "acceptance" campaigns that don't really accept, to campaigns and films like Ransom Notes or Autism Speaks' Autism Everyday Film and the overly negative and generalized media attention it derives. I hope that all of us can look to ourselves, how we grew up, and challenge our conceptions of disability and "normalcy." I like to use myself as an example -- a neurotypical girl who grew up with virtually no disabled people around me; who ignored the mentally challenged boy from down the street as a child because of peer pressure (and fear); I consider myself an example of how to challenge and hold oneself up to criticism everyday FOR THE SAKE OF MY SON, and others like him. I credit Adam for at least starting my journey in changing my world view.

Thanks to a couple of friends of mine who pointed me to the Gillette Hospital Foundation's Cure Pity Campaign. Here is what the copy says on their website:

Most of our patients have medical conditions for which there are no cures.

But through breakthrough surgeries and innovative medical treatments and therapies, we are able to help them overcome some of the barriers they face so they can lead more normal, joy-filled lives.

That’s what we’re trying to communicate with this campaign. That Gillette does provide a cure for one of the most insidious human conditions of all—pity.

We ask you to look beyond the disabilities and see the spirit, resiliency, and determination these children embody.

In these videos, you will see children of various disabilities who are showing us what they can do. No hype, no fear...only what is possible. In the wake of the Ransom Notes Campaign and Autism Speaks' relentless fear-marketing, there are a few of us who would like to suggest that every time you see some fear tactic, that you make a donation to the Cure Pity Campaign of The Canadian Down Syndrome Society of Canada -- the latter which has major bill boards up here in Toronto that say "Celebrate Being." Self-reflection is really important. Listening to communities who are effected by such negative campaigning is even more so and our Canadian organizations can no longer act as if the voice and concerns do not exist and are not valid. With one in seven Canadians recently reported with having some kind of disability, such campaigning may effect most of us in our lifetimes. It may effect our ability to be treated fairly and with respect. It may effect someone's view of us, as they may ignore us altogether BECAUSE we are viewed as incompetent as a result of disability.

Take a look at this story from the UK Telegraph:

Myles Fitzpatrick, a 10-year-old autistic boy who saved his mother's life after she suffered a near-fatal asthma attack, was among those honoured at the star-studded service in Westminster Abbey, London.

Sarah and Gordon Brown with the 10 winners of the Woman’s Own Children of Courage award, and Steven Tomlinson [third from right]

Despite severe autism, which means he is unable to carry out even simple instructions, Myles dialed 999 and directed paramedics to his home after finding his mother fighting for breath.

As a good friend said, fear is good when you want to make people STOP something, like drunk driving. Fear immobilizes. Hope mobilizes. If you feel hopeless from all this negative campaigning, go to these sites and keep perpetuating LIFE and something tangible for our children's future. Send a strong message.


Anonymous -Brian- said...

The Cure Pity Campaign reminds me of another campaign, albiet on a "therapy" level, of others trying to run a "Cure Self-Pity" Campaign.

They could only see me being a "normal" person if I would end what they said was nothing but "self-pity". I should have no problems, whatsoever, according to them, of looking people directly in the eye, approaching people at any time and starting a conversation, and engage in team activities.

When I tried to describe the problems of looking at others with more eye contact, or the problems associated with all the noise and "hoopla" of sports, their answer was always the same: "Stop that self-pity right now! Don't talk that way! You can do it! Start right now and look at me when I am talking to you! There's no excuse for self-pity!"

This only lead to more feelings of isolation, as though trying to communicate with others was a waste of time--they would never understand what it was like having these and other issues, and only speak about the positive "normal" lives that others were living, around me...

It was not a matter of pity, but of truth. When I told others that eye contact was a painful process, and that, when I made I contact, I lost the gist of the conversation, to the point of not hearing a word that the other person was saying, it was not an "excuse", but a "truth"...something that these others (mostly professionals) could never agree to, because they felt "superior" to someone with a disability.

4:43 PM  
Blogger kyra said...

'fear immoblizes. hope mobilizes.' yes. yes to hope! why is it such a hard message for some?

sending holiday blessings to you!

9:49 AM  
Blogger farmwifetwo said...

Brian - but some can learn. I got an appology from my Son's teacher a couple of weeks ago. The Gr 1 - severe, non-verbal one.... She said to me "you could have told me and told me but until I saw him do things for himself, saw him learn..."

One at a time. All we can do is try to change the attitude of those in our sphere by showing.

And I am positive.. she use to be terrified he'd "melt" on her, terrified of the unknown of his autism and now she's pushing him to learn and enjoying having him in her class.


3:34 PM  
Anonymous -Brian- said...

I am trying my best to resolve, internally, the two statements: "fear immobilizes; hope mobilizes", and the one by Spinoza: "“There is no hope unmingled with fear, and no fear unmingled with hope," (as outlined in the left column of this blog).

The first statement seems to be one of contrast, whereas, the second statement seems to be one of integration. Am I getting this issue right, as you see it?

10:35 PM  
Blogger Estee Klar-Wolfond said...

Hi Brian,
Sorry it took me a while to get back to your comment.

You're right about the Spinoza quote. Hope (in the way of charity campaigns to cure autism especially), is based in fear. We fear something and we hope not to have to deal with it. You are not wrong when you "try to resolve" the hope comment here. But if I had to choose, I would put my "hopes" in changing attitudes, rather than in cures. It is something I look forward to as much as we take for granted women's rights, ethnic rights and such.

12:35 PM  

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