Whose Planet Is It Anyway?

Tuesday, May 23, 2006

Never Again

At the Museum of Tolerance in Los Angeles, each visitor to the Holocaust exhibit receives a "passport" that depicts a child. During an interactive tour, the visitor learns more about what happened to that child during the Holocaust. This emotional experience allows the visitor to see more than just the statistics and to gain a better understanding of what the survivors meant when they vowed "Never again."

Although there are some Internet sites that discuss
murder of autistics, I have not seen any site that gives the reader an interactive experience similar to that presented at the Museum of Tolerance. I'm going to remedy that lack by describing what it would have been like for you, the reader, to be a young autistic child from Illinois, three-year-old Katherine McCarron:

If your mother had not been a doctor, she might not have seen any cause for concern when you did not talk much as a toddler. Indeed, she might have thought you were a clever baby for lining up your toys neatly. But she was familiar with today's autism awareness campaigns, and she promptly took you to get a diagnosis and enrolled you in a school for autistic children. She joined an autism support group and became obsessed with finding the best treatments for you.

One of her friends
was quoted as saying that your mother's life was "all about autism" and that she "couldn't break away from the dark stuff." The friend didn't elaborate on what the dark stuff was, but we can make a reasonable guess. Maybe it was the statements from Cure Autism Now to the effect that an autistic child is nothing but "a shell, a ghost of all the dreams and hopes you ever had." It could have been the fundraising solicitations of the National Alliance for Autism Research (NAAR) and other groups that describe autism as a devastating disorder. Perhaps she saw the remarks by Rick Rollens of the MIND Institute, who compared autistic people to train wrecks and their existence to a tsunami. Wherever she looked, your mother found websites, press releases, and posters calling for the demise of autism. It's possible that she watched a recent video by Autism Speaks, which implied that "every day" mothers think about murdering their autistic children.

You were an innocent three-year-old, and you didn't know that so many strident voices had declared your life and the existence of millions of people like you to be a
burden on society. You just enjoyed playing with your toys, watching the bees in the clover, and feeling the soft grass beneath your feet and the wind in your hair on a warm spring day.

Until your mother put a plastic bag over your head and suffocated you on Mother's Day weekend.

** never again **

Suzanne Wright of Autism Speaks, which is funding
prenatal testing eugenics research through its affiliate NAAR, recently said that her vision of the future is one in which autism "is a word for the history books."

Let me tell you something about what it's like to end up as a word for the history books. A century ago, large numbers of Jews lived in Yiddish-speaking villages in Central and Eastern Europe. Such a village was called a
shtetl. Life was often hard for these villagers, who were persecuted in many ways, but they created a rich and vibrant culture in which they celebrated their unique experiences and their different outlook on the world. When the Nazis came to power, these villagers were all rounded up and sent to the concentration camps. A way of life that had endured for a millennium was destroyed in just a few short years.

You're not going to find a shtetl in today's Europe. It's just a word for the history books.

** never again **

55 million people worldwide are on the autistic spectrum, according to an estimate by the UK's National Autistic Society. That's a social minority group made up of 55 million human beings whose genotype has existed since ancient times, who share a thriving international culture, who often find life hard because of prejudice and discrimination but still celebrate their accomplishments and their unique perspective on life.

How many more times will genocide have to happen before our world finally learns to value all human beings? How many more children will die because of hate and ignorance?

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  • One of her friends was quoted as saying that your mother's life was "all about autism" and that she "couldn't break away from the dark stuff."

    Sounds a bit like a "perseveration>"

    Suzanne Wright of Autism Speaks, which is funding prenatal testing eugenics research through its affiliate NAAR, recently said that her vision of the future is one in which autism "is a word for the history books."

    How about "the common popular understanding of autism, ca. 2006, will end up in the history books"?

    You're not going to find a shtetl in today's Europe. It's just a word for the history books.

    There's a good way this could have happened (acceptance) and a bad way it could have happened, and did.

    BTW, am I the only one who thinks that an icon of a wheelchair is an extremely stupid way of conveying that blind users have an alternative to the visual representation of a Captcha?

    By Blogger ebohlman, at 3:52 AM  

  • I just saw and met Elie Wiesel yesterday at U of T. He is on Oprah later today.

    One thought that the concentration camps would be the end of anti-semitism, that darkest age of human history, yet it continues to live strongly today.

    Being human and believing in humanity means speaking up for each and every human injustice, not just ones that hit us personally. It means doing something for the people in Rwanda, Sudan, for the culture of autistic people who are being stripped of their dignity by the inappropriate and immoral positioning of NAAR and Autism Speaks.

    Let us all DO IT NOW.

    By Blogger Estee Klar-Wolfond, at 8:03 AM  

  • I just saw and met Elie Wiesel yesterday

    Estee, can you blog about this, please? I'd be very interested to learn more!

    By Blogger abfh, at 3:08 PM  

  • Thankyou for this post. I came across you via some memorials compiled for Katie on a friend's LiveJournal. I only wish everyone, worldwide, could see what you've written.

    While it's personal for me (both my oldest son and I are awaiting diagnosis... but I strongly suspect we're both on the spectrum) what you've written about is something that hasn't just occurred once and which most people don't find as unacceptable and horrendous as it really is. (Even my own mother made some comments which made me feel icky when I told her about Katie.)

    Thankyou for getting it out there. This is something the world needs to hear.

    ~ Jess, (from LiveJournal)

    By Anonymous Anonymous, at 3:15 AM  

  • Um, can I intrude at this point to mention my new blog? Sorry about this - I'm trying to ensure that the comment boxes aren't empty. Hope you don't mind ABFH.

    Anyway, it's at: redaspie.blogspot.com. It purports to be a journal of disability and autism rights, left-wing politics and occasional Doctor Who fanwankery. I hope people find it of interest.

    By Blogger Redaspie, at 9:08 AM  

  • Yes, anti-semitism is still alive an well these days. Unfortunately, it is fear itself that drives people to commit horrendous acts. We have to work extra hard to take fear-based responses away from the word autism. We have our blogs, our voices, our organizations, and our community.

    It is fear that needs to be eliminated.


    By Blogger E., at 10:10 AM  

  • Visit:


    By Blogger Stephanie, at 3:59 PM  

  • Hi, I've been lurking for a while and I feel obligated to comment on this one.

    I want to begin by stating that I believe effective treatments, and even a cure, for autism should be available for those that want it. Autism does have the potential to be a disabling condition, and autistics should have the right to ameliorate the effects.

    The problem is, I don't think it's responsible to search for a cure right now. Not when the conventional wisdom is that autism is a heartbreaking disease, a burden on society, and something that makes you less than human.

    Before the cochlear implant was invented, Deaf Culture was well-established. They had their own language and way of life. They also had a strong membership base, political clout, and plenty of exposure. That's what we need. Nowadays, parents of Deaf children not only get information about oral education, hearing aids, and CIs. They are offered ASL education and Deaf Culture resources. This is where we need to be as a community. Even Hearing people are learning about and joining Deaf Culture. What a world it would be if people were taking classes on Autistic Culture!

    Moreover, people with CIs are still deaf. The processors can be turned on and off, and most people with CIs will not have perfect hearing. Many people witht CIs are proud members of Deaf Culture and some choose to use their CIs only part-time. Some turn them off permanently. If we ever found a cure for autism, it should be like the CI, something that can be turned on and off. Most importantly of all, it should be used only on fully informed, consenting adults.

    People say that autism is very different from deafness, and it is. But it's also very similar. At one point, Deaf people did not have their own language and were forced to communicate like Hearing people. At one point, Deaf people were considered unable to learn because of their Deafness. Deaf children had emotional and behavioral problems as a result, and many still do. Sound familiar? The Deaf had advanced, and autistics can do the same.

    Notice how they say DISEASE. Not disorder. Not disability. DISEASE. Like smallpox or HIV. The difference may seem trivial to some people, but it's not. While people still misunderstand, pity, and even fear persons with disabilities, more and more people are realizing what disabled people are capable of. In other words, their disabilities don't stand in their way any. Disease, however, brings images of pestilence and death. Add the word epidemic and it's just positively toxic. Standard propaganda formula.

    Don't get me started on the primary sources of this rhetoric, the anti-vaccination crowd. So having your child DIE of a vaccine-preventable illness is better than having your child be autistic? Really?

    By Anonymous Adrianna, at 11:04 PM  

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