HBO has produced a wonderful biopic on Temple Grandin. Dr. Grandin is a professor of Animal Sciences at Colorado State University and has pretty single-handedly reformed the entire livestock-handling industry. About half of all cattle in the U.S. go through a Grandin-designed system from feedlot-to-slaughter. Her designs have been embraced by the cattle industry and also lauded by animal welfare, and even animal rights, advocates. Cattle who pass through her systems endure much less stress, pain, and suffering.
Dr. Grandin also has autism. She credits her autism as enabling her to think visually and put herself in the place of cattle to understand what causes them stress and suffering. She has written and lectured widely on autism as well as animal science, animal welfare, and humane slaughter. In short, she's pretty amazing.
While I haven't read any of her autobiographical books, if the HBO movie is accurate, her mother was told her daughter would never talk and should be institutionalized as a young child. Her mother refused to follow that "standard of care" and instead encouraged and pushed her daughter to attend school, college even. Her mother, as with so many mothers of children with "disabilities" was her advocate. In the movie, one of her mother's mantra's is that Temple and life with autism is "different, not less."
I was struck with the horrible thought of how many children just like Dr. Grandin were institutionalized, neglected, and essentially forced to live up to the no-expectations curse that was put on them. What a crime against humanity for the children, their parents, and society at large.
Dr. Grandin has taught an entire industry that no doubt is often hostile to change, to women, and to animal welfare advocates how to do things better. Not just "different, not less," but "different AND better." What has society lost in snuffing out the potential of all the other Grandins over many generations who were condemned to institutions and the tyranny of low expectations?
Jenny McCarthy has also been in the news a lot lately. McCarthy, of course, came to fame as a Playboy model and then a comedienne and television personality. But, she's best known now as a speaker and activist on autism issues.
Full disclosure -- I don't have any direct experience with autism. But there is something about Ms. McCarthy's approach that I find deeply disturbing as a parent of a child with a disability. McCarthy is focused on a couple things that stand out. First, the supposed vaccine-autism link and second, the idea that kids with autism can be "cured" or, more crudely in her words, "fixed."
I'll leave the vaccine thing aside, except to say that I don't buy it. Not just because of the many studies debunking the one published study claiming a link, but also because I just don't see a motive in this alleged public health cover-up. What is the upside for the "vaccine deniers"? Money? Fame? Desire to create more autistic kids?
Okay, on to my larger concern, the idea that kids living with autism need to be "fixed." Again, I don't know if "a cure" is possible or not, but I have grave concerns about the message that they NEED to be fixed. And, the implication to parents that if they try all the things suggested by the "fixers" and it doesn't work, they have failed. Certainly, there are interventions, therapies, etc. that are no doubt god-sends, valuable, wonderful. For example, Grandin invented a type of squeeze-chute for herself to calm her during times of sensory overload and it is apparently helpful for others living with autism. But an intervention or therapy is not a "fix." An intervention or therapy helps people living with autism, or other challenges, to achieve their potential.
Perpetuating the idea that people with differences need to be "fixed", in contrast, does a lot to prevent those people from living up to their potential. It stunts growth, frustrates development, and fosters the attitudes that make for an unwelcoming and hostile society at large.
By advocating "fixing" kids with autism (or any other disability), it also sends the message that these people are not just different, but that they're "less." And, I find that abominably prejudiced. Stone age thinking. Whatever the equivalent is to racist when talking about anti-disability biases and attitudes.
Come to think of it, why don't we have a word for that? We have "racist", "sexist", "homophobic", "classist", etc. Okay, that's a topic for a future post.
Would anyone in this day and age suggest that we can "fix" being of color? I know there are still the "you can cure homosexuality" bigots out there, but I do think they are largely seen as the bigots they are.
CONVERSATIONS ABOUT INTER-ABLED ROMANCE, part 5
9 years ago
I vote for dumb assist or maybe dipstickist or jackhole-ist. I'm looking forward to the future post where you'll coin a new term for these fools.
ReplyDeleteMcCarthy is a lightning rod on the whole immunization topic. I agree with you on the lack of evidence. But having worked at the TX Dept. of State Health Services for over a year, I have seen lots and lots of parents very concerned over this connection. Okay so maybe Texas is not exactly middle of the road on these types of issues anyway. It is home school-o-rama down these here parts. Religousity run amok, distrust of gov-ment, and anti-intellectualism. What is surprising is the number of well educated parents that have succumb to the media frenzy and fear mongering around the issue.
I know we have our moments of doubt about all kinds of things because of some early in utero tests that pointed to possible downs syndrome. It is innate for parents to want to safe guard and protect our children. In this age of information overload, it's hard to determine what to listen to and what to discard.
More importantly than media and info over saturation is the idea of fixing. In my hopeful moments, I like to think that this is merely ignorance. I think back to my days of a freelance web designer enamored with new cool technology and building site with Flash. I gave some thought to usability but only in my sighted, able-bodied user frame of reference. Then I got a gig working on a new national collaborative about workforce and disability. Section 508 was freshly being enforced across the board on ALL websites with federal funding. The Dept. of Labor was funding the project and wanted it to be an example of accessibility and good design. No pressure, all I had to do was find out what made a website accessible.
It has never been said of me that I don't throw myself into projects. I found an amazing resource lab in DC where users with disabilities volunteer to use (or really try to use) your web site with their assistive technology while you observe. Eye opening would be an understatement. Download a trial version of JAWS and try to navigate a site listening to it. It wasn't just about learning something new professionally. It was about meeting some very smart and cool people who just happened to be blind or have a visual impairment or a physical impairment. Imagine this but hey they all actually use the internet too. And even more amazing if you actual understand how assistive technologies work and interact with browsers and consider that knowledge when you design a site, app, widget, whatever - it only takes a little bit of effort to change their user experience from completely suckfest to easy.
Maybe that's a little too techy, but the lesson was simple and holds true across all ignorance, prejudices, fear. It shaped a belief I still hold, some say naively. All that ugliness drops away when one person gets to know another person, listens to their story. They stop being colored, foreign, disabled, gay and they just become a person, a friend, a son, a hero.