My Photo
Name:
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

Monday, January 29, 2007

 

The Tougher Hill



"To hate is to refuse to accept another person as a human being, to diminish him, to limit your own horizon by narrowing his, to look at him - and also at yourself - not as a subject of pride but as an object of disdain and of fear..."
- Excerpt from The Oslo Declaration



This picture was taken last year when Henry hosted Elie Wiesel in Toronto. We are seen here at a book signing at Indigo Books in Toronto. I didn't "advertise" this photo for all sorts of personal reasons, however, I feel it is time to discuss the tougher hills people have climbed in their lives, and how that relates to autism.

Autism is referred to all to often as a war, a fight, a combat. The war is waged largely between ABA parents and those who do not solely advocate for this one type of therapy. There are large factions of us in between, who want to acknowledge and receive support for an education and accomodation that befits our unique child and the ABA "fight" doesn't do this. There are many who understand that if there is a tougher hill to climb than putting the onus on children to change, it is this hill of prejudice that effects our children.

In my opinion, Elie Wiesel has climbed it. With a recognition that prejudice abounds, and may always, people like Elie don't give up the quest for peace, justice and the dignity for all.

Mr. Harold Doherty (Autism Reality NB) and some others want to create divides, where there should be none. Your toughest ABA advocates who I know personally, have called me to find out about other approaches (you know who you are), because all they want to do is to help and accomodate their children: the ultimate acknowledgement that their are other ways to broach autism education other than ABA.

Mr. Doherty calls autistic people who can communicate "not autistic." He creates divides between levels of functioning to justify services and money -- as if the "neurodiverse" movement is doing an injustice. Yet, all autistic people require accomodations throughout their lifetime. There should be no prejudice towards autistic people in terms of the assistance that they require, no matter what level of functioning. People like Mr. Doherty like to put the blame on someone for not getting ABA therapy funded as a sole "treatment" for autism. So it will be people like me, like Michelle Dawson, like any one who wants something better and let's face it, a lot more complicated.

I am advocating for more services, not less. I am advocating for the basic human right of the disabled person to be regarded as a full member of society. I am advocating for a new standard of ethics to be applied as it would be for any of us, towards disabled people. I am advocating that autistic people should be on the Ministry of Education's reference committee on autism, and any other committee or policy that concerns autism. I am advocating for parents to receive support and compassion with the challenges they face in raising speical needs children, so that they will also experience the joy of their child. I am advocating for bias and harmful language to be removed from autistic organizations and scientific research, for the purpose of creating hype for money, and which end up perpetuating prejudice and continued segregation. I am advocating for the parent's right to participate in educational and service desicions for their children while also drawing the ethical line of how far those decisions can go. I am advocating for inclusion of all disabled members in society at all levels -- which may be the hardest objective of all -- as prejudice starts young and runs deep. Yes, inclusion can be cruel if a disabled member is not fully accepted and accomodated. But inclusion should be the ultimate goal. Real inclusion. I extend my hand to you, Mr. Doherty, and any others who wish to work together for the sake of our children, to find that middle ground that will help them be the best autistic people they can be. If autism "awareness" was built on the backs of people like you (and not), then we have to ask ourselves now, with the advent of the disability rights movement, with the voices of autistic people yearning to be heard which can benefit the way our children are viewed by society, where we are going? Between your reality and mine, there lies a place where we can achieve our goals.

I don't think the onus should be on our children to just "fit in," or "become normal," and ABA has functioned on this premise of making children "indistinguishable from their peers," with questionable methods. I believe that the onus is on the rest of us to discover all people -- their intrinisic value, beauty and worth.

It may take a very long time, for prejudice is the toughest hill to climb.

5 Comments:

Anonymous christschool said...

Estee, this is a very thoughtful post. You raise many worthy points which need to be examined.

1:40 PM  
Blogger mcewen said...

'as prejudice starts young and runs deep,' you know that this used to be my opinion too. I would watch as small children of 18 months under 5 would back away from my children. Some instinct warned them of the 'difference' which they instantly recognised but I couldn't work out how?
I still don't know how 'exactly' people know, but I don't think that is the essential point. The most important matter is how, having recongised a difference, what you do with that knowledge.
You can see this is small children too. Little ones, give other people the benefit of the doubt.......until they are whisked away by their parents.
Best wishes

1:57 PM  
Blogger Alyric said...

If ever there was a method of instruction that is incapable of moving with the times and accommodating new data, ABA is that method. It's the remnant, a vestige of a former age clinging precariously to the fringes of psychology. It has long been sidelined as a serious form of pedagogy in all fields bar autism. It has no scientific basis. It has never been demonstrated that operant conditioning "works' for humans - and so says behaviourist literature. Marianne Ofner was more right than she knew when she said that to recommend this form of therapy, one had to be a behaviourist. That wasn't what she meant to say but it was certainly accurate. And I think that because there has never been proof that this is a reasonable thing to do with children, autistic or otherwise, the results of its effectiveness as therapy are so random - this study - yes and that study no. I read something recently which referred to Thomas McKeachie - former President of APA who in 1970 gave a few reasons why behaviourism is so attractive. A, it's simple, B it's an offer of hope - a magic bullet and C, I would add that parents are mightily attracted to a full working week's worth of respite care. It doesn't take much to convince a parent that one-to-one and a structured program must be good for you. I'd bet the bank that the vast majority of parents have never even looked at behaviourism and if they did, some of the enthusiasm might die, because let's face it, absent proof that ABA is based on sound scientific principles, what are these therapists doing? Training for obesity through the prolific use of high calorie food reinforcers seems to be it. But that's not the worst. Because through history, through misplaced professional zeal and a lack of critical thinking skills, the autistic presence that might lend a little perspective and sanity to the proceedings has been thoroughly marginalised. We can thank the likes of James Mulick and Kit Weintraub and a fair amount of the blame accrues to FEATBC for the current farcical situation. Here we have, for the first time in the history of autism research some real data, which looks not at the environment (the behaviourist approach) but at the autistic person (anathema to a behaviourist). And that data,coming from Mottron, Dawson et al - from a Canadian university no less is quite likely to be marginalised as well because behaviourism of the sort underlying ABA is just not capable of using it. That's the tragedy and one that unwittingly, parents are pushing.

5:16 PM  
Blogger Jannalou said...

I hope you don't mind me advertising myself on your blog, Estee. I would like to draw people's attention to an advocacy effort I have begun. Please follow the link and read the page through. There is a French version in the works - a friend has translated it for me and I have simply to code the page so people can read it.

And there will be more projects to come. We're starting here, and eventually we'll begin lobbying for precisely what you're talking about here: proper supports and funding for those services people truly need. We just have to stop this bill first.

7:15 PM  
Blogger Estee Klar-Wolfond said...

Hi Janna,

Advertise away!

7:48 PM  

Post a Comment

Links to this post:

Create a Link

<< Home