Whose Planet Is It Anyway?

Friday, August 31, 2007

Pity's Scrap Heap

I recently came across a forum post by a young autistic man who wrote that he did not believe he was fit to be a father because he had "bad genes." Unfortunately, that wasn't the first such post I've seen. Over the past few years, as the autism epidemic propaganda has spread across the landscape like a noxious fungus, I've seen many posts in which autistics described themselves in such terms. One woman wrote that the Autism Speaks awareness ads left her feeling like a heap of genetic scrap metal. There is a mock awareness poster on the autistics.org website that puts it this way: "Odds of having an autistic child, 1 out of 166. Odds of an autistic person feeling like garbage when reading autism epidemic hype, 64 out of 83."

When you're a target of pity-mongering cure charities, it can be hard to keep your self-respect and to look at what's going on from a broader perspective. The truth is, society's privileged elites have been describing various minority groups as having "bad genes" ever since genes were discovered in the 19th century. Back then, doctors and scientists authoritatively proclaimed that anyone who wasn't white had "bad genes." Now it's autistics and other people with disability labels. Same prejudice, different minorities.

The pity industry is big business. The infamous Labor Day muscular dystrophy telethon, which has been spewing rivers of disability prejudice for over 40 years, raised $61 million last year. Some people think that the telethon's condescending attitude is excusable because it has raised so much money for a cure. Well, no, treating people as pity objects instead of human beings is never justified; and the cure is, of course, nonexistent, so where has all that money really gone? To pay the salaries of fat-cat charity executives, to further inflate Jerry Lewis' already gargantuan ego, and to fund the development of prenatal screening tests that become more accurate every year in identifying fetuses to be aborted.

No doubt, over the years, well-meaning contributors to the telethon didn't intend that their money would be used for purposes of eugenic abortion; but it is an inevitable result of the attitude that certain kinds of people belong on the scrap heap unless they are cured.

It's time to send the telethon off to the graveyard of old prejudiced TV programs, bury it six feet under, and pull the plug on pity.

Edit, September 3: The Anti-Telethon Blogswarm is now up at Kara's Place. Check it out and join the protest against pity!

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  • True, but depressing.

    We have all kinds of legislation going on for research, education etc, but where are any supports that someone like me with an executive function issue who still works, and is not 'qualified' for what is available to others? Should I re-join my aging parents and bog down their enjoyment of their retirement life? I think not, and I think it is not right for our society to leave so many adults unsupported while the powers that be (ir)rationalize what is needed.

    By Blogger Patrick, at 12:59 PM  

  • This is such a nice addition to the thread I made on a norwegian board "Destructive use of Language" refering to the way the media portray autism. I am thinking alot of that not-so-very-pleasant article Hunting down the gene that traps children in their own world with this among other things written in it:

    "but it prompted thousands of parents to agonise over the cruel condition that seems to leave children walled off in a social and emotional world of their own, apparently beyond their love. "

    By Anonymous erkolos, at 3:13 PM  

  • I don't want pity, either for myself or my older son. I want understanding.

    By Anonymous bullet, at 4:23 PM  

  • My child should not be pitied. She should be respected and accepted as a human being. She is flawed; she has strengths; she has weaknesses; she struggles; she sees the world in a unique way.

    Pretty much like every other human on earth.

    By Anonymous Bink, at 7:06 PM  

  • By Blogger Bev, at 7:08 PM  

  • Why can't these charities get some snese into them and buy tools and accommodations for people with disabilities, and fight to pass accessibility laws?

    By Blogger reform_normal, at 8:38 PM  

  • Pity is easy to use. It is a fast response.

    Understanding by its own definition takes knowledge.

    It is far easier to pity than to learn.

    By Blogger bigwhitehat, at 9:05 PM  

  • Bullet,
    I understand you and your son were poisoned by mercury. I pity you not being able to understand this so you can help yourselves.

    Comparing people who were poisoned to people of different races is a poor analogy. Sanity demands that you remove the poison and get well.

    By Blogger Fore Sam, at 8:12 PM  

  • I love this! My daughter has T21 and I wouldn't change or cure her for anything. I think she is a unique, beautiful person with various gifts and will contribute in her own way many things of value to our world. My goal as her mother is that she will grow up to be full of confidence and appreciation for who she is...never wanting to be anything but. So your post and blog makes me well...happy. I look forward to visiting again.

    By Blogger Nicole, at 11:46 PM  

  • Nicole, hi, it's always good to see a new reader here!

    By Blogger abfh, at 11:32 AM  

  • I have said this before, but I think the prenatal screening tests simply will not work. There are too many genes involved, and that fundamentally I believe that ASDs are not a "disorder".

    It is a spectrum. ASD traits are fundamental human traits. They are like being tall. If being tall was a disorder, could genetic tests be developed that could be used to purge all tall individuals? Yes, they could. But there will always be individuals who are the "tallest".

    For the most part, genetic screening studies are easy, all it takes is a blood sample. You put it in a machine and out come gene sequences. Compare enough and you find differences. Are the differences "important"? Good question, obviously genes are not the whole story because homozygous twins can be discordent for ASDs.

    What that means, is that if you did have a test, and tested the DNA of the discordent homozygyous twin pair, in one case the test would be "correct", and in one case it would be either a false positive or a false negative.

    This is an inherent defect in any such test that more genetic research can not "fix". There are aspects of ASDs that occur during development and are not mediated genetically. These non-genetic aspects cannot be determinined via genetic testing.

    Any such genetic testing will have either false positives, false negatives, or (more likely) both.

    There are some families with multiple siblings on the spectrum. If half of full siblings are on the spectrum, depending on the false positive rate, any child those parents may conceive might test as positive. How many "normal" children would a woman be willing to abort to avoid an ASD child? 2, 5, 10? This isn't going to be like Mendelaean genetics where there is one gene from each parent and 1 in 4 offspring are homozygous. It will be more like 4 out of 5. If there is a 50% false positive rate, a woman who aborts 4 fetuses will have aborted two that were "normal". How many cycles of pregnancy, amniocentesis, testing, abortion is a woman going to be willing to go through? 2, 5, 10?

    Legal liability issues (i.e. lifetime support for "wrongful birth") will likely cause the test to be weighted to produce more false positives and fewer false negatives.

    Genetic researchers may pretend they can fix this "problem", because it improves their prospects for funding. But they can't. There is a non-genetic component of ASDs (I think that component is low NO).

    Without an understanding of how any genetic differences translate into ASD symptomology, purging genes from the human genome will likely cause problems. Maybe NTs will be happier in their world if there is no one on the ASD spectrum. But who is going to design, build, program and run the computers of the 23rd century if there are no people with Asperger's? NTs?

    By Blogger daedalus2u, at 3:51 PM  

  • Thanks for this great post. I've blogged on the telethon also, over at http://reunifygally.wordpress.com/2007/09/03/why-deaf-people-should-boycott-jerrys-telethon/, though mine is written from a Deaf perspective instead of an Autistic perspective.

    By Anonymous Anonymous, at 12:50 PM  

  • Great points! Thanks.

    By Blogger NO, at 3:57 PM  

  • i still have to fight the "bad genes" feeling, and partly becos some of what i think would make me an incompetent parent is AS-related. but i suppose i could learn, just as i have learned other things i thought impossible, if only i am not too old to manage by the time i figure out some stuff.

    By Blogger Natalia, at 9:55 PM  

  • Couldnt agree more!

    By Blogger Casdok, at 12:01 PM  

  • I read on CNN that Jerry Lewis was criticized during the most recent telethon for using that "f-word" that is a slur for gay men. He's spewed a whole bunch of pity-mongering crap regarding the disability community, and THAT's the thing they catch him for (not that it's any less offensive than his pity-mongering towards the disability community).

    It's like looking for cockroaches or termites while ignoring the elephant in the middle of the room.

    By Blogger MeridiusMD899, at 2:30 PM  

  • Check this out:

    Jerry Lewis uses a homophobic slur....


    By Blogger Chasmatazz, at 8:11 AM  

  • By Blogger Chasmatazz, at 8:14 AM  

  • This is exactly why I'm going on all the time, about how curbie groups like Autism Speaks have a Genocide agenda.

    It's no different than if Hitler had got the genetic code for what makes a Jewish person, and then saw to it that anyone with that genetic code would be aborted.

    Anything can be made to be seen as a disease. It won't be long until we're living the world of 1984 and Gattica, where babies are genetically designed.

    By Blogger violet_yoshi, at 5:37 AM  

  • It's like people and parents are stuck in this matrix of what the media creates a vermin fear of autism and that it's catchy.
    Sad really reminds me of those propaganda films about the german propaganda film where it shows a flood of rats compareing them to jews.
    I have aspergers syndrome myself.Having a perfectionist father the media reminds me of the worship of perfectionism clouding thinking.
    I wrote a letter questioning the center for disease control and they were good about answering but don't seem to awake out of their matrix.
    If people saw the movie The Matrix you'd know what I mean.
    I agree completly I wouldn't want to be cured because I don't believe brain diffrences is a mistake.
    Out of all the blogs you got it right whoever owns this blog.
    It feels good there's someone else questioning why doesn't the news people ask the autism people who are intersted in answering in the way theyre able to.
    Also what is everyone afraid of?
    Forms of Autism is not catchy.
    I'm wondering if there's a hidden agenda to getting people full of fear.
    Fear is used to make people go to war or buy a product.That is a fact throughout history.
    The propaganda is that its to help you when it's really to help the company's stocks.
    I'm wondering what future product are they trying to get rich off of.
    What greedy company is behind the autism epedemic campeign.
    What's their method to their madness to the Epedemic overused word.
    I love your long post keep up the critical thinking.
    I like it.
    I hope more people question like you, because when people throughout history ran into something bad they couldn't easily get out of once they believed it and agreed with it.
    The autism people need empowerment as the african americans had and sadly that isn't going to come from the Pity scrap heap media.
    That's why I write letters and speak on panels about my experince because autism empowerment might take awhile.
    I hope to leave behind something that will help future genrations with acceptence not avoidence.
    I mean I guess that requires a voice with autism people and I struggle with which makes the media hate all the more awful.
    The media are cowards facing the real thing they'd rather just recycle what some other Jo blow wrote.
    I love all the other posts and agree with evryone else.
    Yes I want understanding too and coming down to my level because that makes the world less of a place to not feel anxious and overstmulated in. If people just listened to autism diffrent needs in many diffrent ways.
    Like useing pictures or getting into my world speaking my lanquage.
    The keys to understanding are so close but the media is so arrogant to pick them up.
    This is a society problem not an autism problem.
    That it doesn't just accept were here get used to it.

    By Anonymous Anonymous, at 11:29 PM  

  • Hi -- I wanted to make sure you knew about the latest that is happening with Jerry and his, yes, humanitarian award:

    Jerry Lewis, the man who runs the annual Telethon to raise money for people with muscular dystrophy in the US is about to receive a humanitarian award. Many people in the disability community is protesting this award because they feel that Jerry perpetuates and entrenches negative, harmful stereotypes toward people with disabilities. More about the petition campaign at: http://www.petitiononline.com/jlno2009/petition.html

    There is also a Facebook group at http://www.facebook.com/group.php?gid=40538392681

    By Blogger Andrea Shettle, MSW, at 10:02 AM  

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