That Must Be So Hard

During the Good Morning America segment on neurodiversity, Kristina Chew corrected the interviewer's suggestion that she was suffering because she is a parent of an autistic child. "I don't feel that I suffer," she replied. On Kristina's blog, a commenter named Sharon discussed how widespread this view of inevitable suffering has become, and how often she, as a parent, has to deal with this assumption that she must be suffering. Sharon wrote:


I know when I tell people that my sons have autism, the look of pity on their face and they say "That must be so hard."


Reading that comment, I was reminded of a conversation that I had almost 25 years ago with an older white woman, who was generally a nice and well-meaning person and who thought of herself as tolerant, but who—like many of her generation—had more racial preconceptions than she realized. We were talking about an African-American woman who had a light complexion, and I mentioned that her children all looked very much like her husband, whose skin was much darker.

I wasn't thinking about it in racial terms and just meant to comment on the children's close resemblance to their father; but much to my surprise, the response that I got—complete with a pitying sigh—was "That must be hard for her." Not sure what to say to that, I just stammered something to the effect that I thought she was happy to have three healthy children, no matter what color they were.

Times have changed, and it's been quite a while since I heard anyone suggest that a person of color must surely be disappointed when his or her child turns out to be darker. Most people nowadays would understand that this is a prejudiced and mistaken assumption that shows disrespect for both the parent and the child; however, it seems that very few people realize the offensiveness of making similar statements about parents of autistic children.

Granted, there are some autistic kids who did not inherit their autistic traits from a parent; but familial inheritance accounts for a significant percentage of the autistic population. (I suspect that the actual percentage is considerably higher than the genetic studies indicate, as it's likely that many multigenerational autistic families are choosing not to take part in genetic studies because of the possibility that the research could be used for eugenic purposes.)

I don't mean to suggest that pity is ever desirable, because it's not; pity always objectifies and dehumanizes those who are on the receiving end of it. Still, it strikes me as particularly obnoxious when our society is so ignorant—and so intolerant of diversity—that many parents who are autistic themselves, or close to it, are being told that their lives "must be so hard" because their children are like them.

Pity. It's 100% curable.

This outstanding tagline belongs to an advertising campaign for Gillette Children’s Specialty Healthcare, a nonprofit hospital and clinics in Minnesota serving children with cerebral palsy and other disabilities. You can learn more about Gillette and its ad campaign by visiting http://www.curepity.org/ (a great domain name, too!) which prominently features an image of a confident and joyful child in a wheelchair. Steven Koop, M.D., who is Gillette's medical director, states on the main page: "Every child has hopes and dreams, and the children who come to Gillette are no different. They simply have more barriers and challenges before them."

I'm posting this example of excellent advertising as a response to a comment on Autism Vox by Marie S., who asked what a positive campaign seeking to raise awareness of services for children with disabilities might look like. Marie was responding to Kristina Chew's discussion of a New York Times article discussing the Ransom Notes controversy. The article discusses the widespread outrage and public condemnation of the stereotypes and stigma perpetuated by the Ransom Notes ads, and it mentions the work of the Autistic Self-Advocacy Network in coordinating a response. Kristina Chew is quoted in the article on the importance of finding a more positive way to frame autism and other conditions.

The reporter also interviewed Dr. Harold Koplewicz of the NYU Child Study Center, who stated that he was surprised by the opposition to the Ransom Notes ad campaign. He seemed to be particularly taken aback by the extent of the criticism from autistic self-advocates and parents of autistic children. The article describes his reaction as follows:


Dr. Koplewicz said he had not considered jettisoning the campaign, but there was some discussion about dropping its two most controversial components: the autism and Asperger’s ads.

He decided to retain the ads after conferring with colleagues whose attitude, he said, "was that some people would be upset but that we should stick with it and ride out the storm."


Nice try, Dr. Koplewicz, but the storm is only going to get stronger. We're not going to shut up, we're not going to go away, and we wouldn't be satisfied even if you did drop the autism and Asperger's ads. Playing the divide and conquer game won't get you anywhere this time. We fully intend to keep on raising hell until every last one of those disgusting Ransom Notes is taken down, NYU makes a sincere apology, and disability rights groups are invited to play a meaningful role in designing a replacement ad campaign that promotes understanding and respect.

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!