Whose Planet Is It Anyway?

Friday, December 22, 2006

The Disability Prejudice Train

I got a few comments on my Autism Whines Blues post from people who thought that I was being too critical of Autism Speaks and who pointed out that most of the pro-cure parents have good intentions.

Well, OK. For the record, I don't dispute the fact that most of the ordinary working folks who make small donations to Autism Speaks honestly (although mistakenly) believe that they are doing something to help autistic children. I also agree that most of Autism Speaks' rank-and-file supporters (unlike their leaders) are caring parents who would never dream of murdering a child.

There's one more point in need of clarification, which explains the other two. Although the language and views expressed by Autism Speaks are extreme by many standards, they represent a natural and logical outgrowth of an existing cultural prejudice that equates disability with death.

Today's quest to eradicate autism took root in the same social environment where Dr. Jack Kevorkian spent many years exhorting disabled patients to commit suicide with his assistance; where, as Joel just wrote, euthanasia is widely viewed as a compassionate means of saving a person from an undignified life; where eugenic abortion has become so commonplace that about 92 percent of fetuses identified as having Down Syndrome and 95 percent of fetuses identified as having cystic fibrosis are aborted; and where medical charities often solicit donations by playing up the supposedly inevitable horrors of living with a disability.

I recently received a solicitation letter of that sort from Smile Train, a charity that sends medical teams into developing countries to perform cleft lip and palate surgery on children from low-income families. The letter began by asking if the reader had ever saved a child's life, and it went on to make the following assertions (emphasis in original):

Although a cleft is not a matter of life and death, it's not much of a life for the child.

Being born with a cleft in a developing country is a life sentence of shame and suffering.

Most children with clefts never eat or speak properly. They can't go to school or hold a job. They're often ashamed to go out in public and are taunted mercilessly by other children.

Many children with clefts are abandoned every year soon after birth by their families. The "lucky" ones survive to spend the rest of their childhood in orphanages.

The good news is that there is a simple answer to this problem and a way to help end the suffering of millions of these children. We've found a way to provide cleft surgery that is safe, effective, and affordable.

Nowhere in the letter is there any suggestion that it might be desirable, or even possible, to end the intolerance that is causing these children to be abandoned in orphanages—the same intolerance which, in our allegedly more civilized parts of the world, causes many parents to rush to the abortion clinic as soon as a cleft becomes visible in the ultrasound picture. Rather, the letter simply takes it for granted that anyone who does not speak "properly" is doomed to a life of social exclusion and suffering.

So yeah, maybe I'm being a smidge too critical of Autism Speaks. They didn't invent disability prejudice; they just took it to new depths. And it's the widespread social acceptance of attitudes like those described by Smile Train that made it possible for Autism Speaks' leaders to declare publicly, to applause and donations, that their goal is the worldwide extermination of a minority group consisting of an estimated 60 to 70 million people.

You want to save a life? Take a stand against disability prejudice. Any one of us could fall victim to it at any time. The life you save could very well turn out to be your child's or your own.

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  • Brava! Yes! Thank you.

    By Blogger Penny L. Richards, at 11:33 AM  

  • Yeah...I got one of those Smile Train things in the mail as well, and had a similar reaction. It's one thing if a person's cleft is keeping them from breathing effectively or making them prone to infection (things that could be life-threatening), but it's quite another if it's just an aesthetic issue. Making someone look "normal" should NOT be a condition of "saving their life".

    By Blogger Zilari, at 1:01 PM  

  • I take your point in this context, the 'problem' is the time lag [delay] between 'educating' about prejudice and the suffering that people endure in the meantime.
    I'm fortunate in that I am largely immune to people's reactions to my children's disability [unless they direct their prejudices at them rather than me] but it took me a while to develop a thick skin. [Rhino hide]
    So perhaps we should be focusing on how to speed it up?

    By Blogger Maddy, at 1:06 PM  

  • OK this is my last post. Don't worry I know my views are not wanted and you view me as a troll.
    I was about to leave this blogsite in absolute disgust after posting my last post in Autism Whines. I then as an afterthought read your newest offering.
    It was right on the mark. I mentioned the morons in NeuroDiversity who are anti-nt. They are morons but not dangerous maniacs as the people wanting to abort possible autistic fetuses.
    This element of Autism Speaks ought to be destroyed. Misguided and/or desperate parents of autistic children can be swayed or reasoned with if communication channels are open and a patient, tolerate and informative discourse left open. Murderers are a bit beyond that.
    I am all for supporting parents of autistic kids in whatever efforts they try to support, educate and treat their children. I am happy to help educate misinformed or uninformed people about autism. I am happy to show tolerance to well-meaning but wayward folk acting in what they think is the best for autistics. I oppose selective extermination.
    I think moderation, tolerance and education are needed especially when considering more than 99% of the population isn't autistic and the majority of this number are in no way even affected by autism.
    As a last note, the reason I lashed out at you and your blog ABFH is you verbally attacked a friend (no not Foresam - yes I post on his site. I find him basically brutally honest, passionate and compassionate about his child but also at times self-righteous, arrogant, rude and opinionated - something I have not been afraid to state on his site either).
    HOWEVER this latest blog is 100% on the one I commented on and you were big enough to concede some very big points which I found aggravating. I am a big enough man to admit I may have been too severe and misjudged you and the views you represent.
    Anyhow as I promised I won't return but wish you and the rest of the site a Merry Christmas.

    By Anonymous Anonymous, at 7:03 AM  

  • Penny and Zilari: Thanks, and I hope you both have a great New Year 2007!

    McEwen: Yes, it's a long road, and I don't blame people who try to escape prejudice by conforming to social expectations. I'm guilty of doing that myself, in ways as simple as coloring my hair to hide a few strands of gray -- we all do such things. It's almost impossible to go through life without being a conformist in one way or another. The pressures are huge, and "rhino hide" is definitely needed when one takes the path less traveled!

    Ross: Merry Christmas to you also. On that other post, it wasn't my intent to attack Jonsmum (I assume she is the friend you mean?) I've had some disagreements with her from time to time, but I respect her as a loving parent who wants the best for her son.

    By Blogger abfh, at 11:08 AM  

  • My best friend was born with a severe cleft palate and nearly died. There are no scars left now (she's 27).

    I've found that once people realise that a kid is "different", they're actually pretty forgiving. Which can be good or bad, depending on what it is they're forgiving (and how they're doing the forgiving).

    It seems to me that the issue isn't so much the everyday people, but those who have wrangled their way into the high-up places in the autism organisations and government etc.

    By Blogger Jannalou, at 7:16 PM  

  • ABFH;
    Yes you are right to assume I am the "friend" Rossco is referring to.
    He is a good friend, and a wonderful father to his children, as is John Best.
    I know it wasn't your intention to attack me, on your last post.
    Yes we have had our disagreements, and to be honest I am tired of arguing against views I see, (in my opinion), as fundamentally wrong. For my own sake I should not read them, or comment.
    I thank you for your generous opinion of me, and sincerely wish you a Merry Christmas and a Happy New Year!

    By Blogger Jonsmum, at 7:04 PM  

  • I've been in a country where Smile Train offered their services, and the environment they described is far from universal. There are plenty of developing countries where a kid with a cleft palate is casually accepted into society, and some where there is less extreme ostracism than what they described. They may have been using the most extreme examples to win more donations.

    But what they picked for an example really shows warped value. If there had been an account of the extreme negative end of the physical consequences of having a cleft palate, that would have been one thing. But to argue that the cure for cruel and irrational predjudice (there's no possible rational basis to use a cleft palate as a bar to school attendance), is to make the persecuted group stop being different, is blaming the victim, and reinforcing the idea that people have a right to mistreat someone for not being normal.

    And I was going to stop responding to the troll, but he also promised to leave, twice. It isn't a certian viewpoint that makes a you a troll; it's putting up an inflammatory argument, and neither defending it, nor admitting you were wrong, but attempting to pass the whole thing off as a "test". This indicates a person more interested in mind-games , boosting your own ego, and getting attention than sincere discussion of the issue at hand. In short, a troll.

    By Anonymous Anonymous, at 5:52 PM  

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