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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

Wednesday, February 07, 2007


Prenatal Screening and Ethics

In the Globe and Mail today, you will find a series of letters, and one paragraph of one I sent in, published regarding yesterday's article "Expand Prenatal Gene Tests, MDs Urge."

Two pages later, one of my favourite ethicists was quoted on The Ashley Treatment, Margaret Somerville, who is author of many wonderful books (The Ethical Imagination: Journies of the Human Spirit, The Ethical Canary) and founding director of the Centre for Medicine, Ethics and Law at McGill University.

She also targets NYT writer Peter Singer for his latest support of The Ashley Treatment and writes:

"He believes in extrinsic human dignity -- that is, dignity is conferred on us by others; we have dignity if they see us as deserving it and that depends on how well we function mentally and physically. Below a certain level, we don't merit dignity and the protections it affords. And because dignity is conferred, not innate, we can, as Mr. Singer proposes, confer on animals the same kind of dignity we do on humans. Humans are not special in any relevant sense and thus not deserving of respect different from that owed to other animals. So if you can redesign your dog, why not your disabled child?

Mr Singer says the surgery is ethically justified on a wide definition of 'best interests' and uses a utilitarian ethics analysis. That analysis does not involve an inquiry into whether something is inherently wrong. What is and isn't wrong depends on circumstances.

I suggest we need to inquire into inherent wrongness (a prinicple based on ethics analysis). The arguments that the intervention on Ashley is inherently wrong would include that we're dong something to this girl we would never do to a non-disabled child; that it's not 'the least restrictive, least invasive way' to achieve a necessary benefit (an ethical requirement for 'wounding' interventions such as surger) because we could provide assistance to the parents; that it's only peripherally therapeutic and cannot be justified on htat basis (although a medical cloak makes us feel better); and that Ashley is being treated as an object to be 'designed,' not a natural person to be respected whatever her state -- which afterall is 'her..."

Once we leave ethical analysis at the individual level, the case has very disturbing features at the level of societal values. May we redesign disabled people to make them easier to care for? They used to take out all the teeth of the mentally ill people so they couldn't bit their caregivers, but we are rightly appalled by that now. And waht about the precedent it sets for our society with respect to how we value and treat disabled people in general?

In deciding the rights and wrongs of the Ashley case, we should keep in midn that the 'ethical tone' of society is not set by how it treats its most powerful, strong and independent citizens but how it treats those who are weakest, most vulnerable and most in need. It's hard to imagine anyone better fitting the latter description than Ashley."

On February 19th, I'm presenting a talk at Giant Steps in Montreal which I've now re-titled: The Selling of Autism: How the Marketing of Fear Manipulates The Way We Deal with Autistic People. In it, I will be talking about my experiences as a parent, as someone who initially knew nothing about autism faced with dire messages from parent groups, doctors, and of course, the media.

Articles and doctors who promote prenatal gene tests as 'mandatory,' or necessary, only heighten the fear, the urgency. The article on screening yesterday states that it will enable better, earlier interventions in the context of disabilities and Down's Syndrome. We've heard that before in autism. But I ask better than what? If, as we are beginning to understand, autistic people do learn naturally, in an autistic way from their environment (a way underappreciated by the larger population so much so that we are seeking to ameliorate autism and autistic learning altogether as 'inappropriate'), what better intervention can their really be? ABA studies with children under the age of two have been useless, as the children could not "respond" under that age.

I suppose you are thinking like I'm thinking that "in your face," therapy might the way in autism, but how much more "in your face," can you be to a six month old baby than we all likely already are?

I am skeptical and concerned that prenatal testing for disabilities, under auspices of finding "better interventions" will be used as a cost-effective measure to get rid of any person with a physical and neurological difference, instead of accomodating people. We saw the costs of the "mentally ill" written in German posters and ads to justify their extermination under Hitler. Juxtapose this financial "analysis" against our modern politics and lobby efforts: "it will cost taxpayers," or "autism will be a burden on society if..." and we can see that we have not come very far.


Blogger Ruth said...

Recently George Will wrote a column in Newsweek, asking what his adult son with Down's has done that merits the destruction of all those like him. Change that to autism and ask the same question.

Before I knew kids with Down's and autism, I might have bought the hype. Now I know that they are delightfull children deserving of full human dignity and proper education.

10:43 AM  
Blogger Club 166 said...

"They used to take out all the teeth of the mentally ill people so they couldn't bit their caregivers, but we are rightly appalled by that now. "

I wish she wouldn't have brought that up.

It might give some ideas to modern day caregivers...

10:54 AM  
Blogger David said...

"It might give some ideas to modern day caregivers..."

Too late.

Places like the Judge Rotenburg Center (if not that place itself) actually do this on a regular basis, I'm afraid.


12:04 PM  
Blogger mumkeepingsane said...

It all just breaks my heart.

I've asked myself, if there was a genetic test for autism, and I'd taken it, would I have chosen to keep my son. I wouldn't know the joy of having him without having had him. I would be told by some doctor that his life wasn't worth anything and how would I know any different?

And oh, how much poorer we all would be if my answer had been no. I wouldn't have been able to appreciate how wonderful he is without first having experienced raising him. Kinda makes these decisions a no win situation, doesn't it?

All children, my son included, are valuable human beings and deserve respect and dignity. The Ashley treatment, IMO, does not fall into those categories.

12:59 PM  
Anonymous Ms. Clark said...

I hope you can share video of powerpoint slides or something from your presentation in Montreal. I think Michelle Dawson will be speaking there, too. I'd love to see video of her speaking, of course.

4:06 PM  
Blogger mcewen said...

Old mum's like me often have the tests. Tests for junior said he 'might' be deaf. [though no specifics about the severity]
Deafness, even to an ignoramous like myself is a known / familiar concept.
Autism wasn't, but is becoming more 'known' by the general public.
Forewarned is forearmed as far as I'm concerned, I still sincerely doubt that there would be a spate or increase in terminations as a result of advanced knowledge.

10:03 PM  

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