reflections related to disability advocacy, family and (needed) cultural change
Friday, January 25, 2008
In Tazewell County, IL on 1/18/08 Dr. Karen McCarron was convicted of the murder of her 3 ½ year old daughter, Katie. According to news reports Dr. McCarron stated to the police and to the jury that she had suffocated her daughter with a garbage bag on May 13, 2006 purportedly because she had a diagnosis of autism.
Cases like these are terrifying to the disability community. There is a common perception that people with disabilities are perpetually ‘suffering’ and that this ‘suffering’ is somehow contagious to everyone around them. This perception seems to throw a switch in some folks that almost imperceptibly moves them from being human WITH someone to being humane TO them. The person becomes less important, the ‘suffering’ (diagnosis) becomes the only thing that matters.
Once the ‘suffering’ becomes the focus, alleviating ‘suffering’ becomes the goal—or obsession—and what happens to the humans involved is seen as collateral damage. Anything can be justified.
In Katie’s case the perception that hers and her mom’s suffering were monumental persisted even though she had not lived with her mom in months and it was reported by all the folks that she HAD lived with that she was happy, singing, loveable, little girl.
While daily care presents challenges for people with disabilities, clinging to the slippery slope created by prejudices, general perceptions and policies is an out-and-out battle for survival. Organizations like Not Dead Yet exist to fight this battle.
Throughout history this battle has occurred on many fronts—babies with disabilities were left on hillsides to die in ancient Greece and folks with disabilities were high on Hitler’s extermination list—and it rages on today.
In the last year there have been stories out of Portland, Oregon and Lexington, Kentucky telling of abuses in large institutions—and these are just the stories that made the news. Our taxes continue to fund these institutions despite overwhelming evidence that they are much more expensive (and less desirable) than community-based housing alternatives.
Life expectancy, health, educational gains and quality of life for people with Down syndrome are higher than they have ever been, yet the American College of Obstetrics and Gynecology came out with a recommendation last year that ALL babies in utero be tested for Down syndrome. They made this recommendation while knowing that 85-95% (depending on who you read) of all positive tests for Down syndrome result in abortion. And one of my friends was at a conference two weeks ago where it was announced that the birth rate of babies with Down syndrome in California was nearly down to zero.
In the last couple of years there have been surgeries performed on children with disabilities that would be refused to people without disabilities even if they requested it. There is an overriding belief—even in this age of amazing accomplishments in science and technology—that the challenges of disability are just impossible to address any other way. And that anything is justified to alleviate ‘suffering.’ The effect on these children of being customized for ease of portability may never be known, the effect of treating a person with a disability in ways one would never treat a person without a disability (aka dehumanizing them) diminishes everyone. It is a sign telling us who we really are.
The disability community is relieved and grateful that the judge and jury in Illinois recognized Katie’s humanity and convicted her murderer.
Her father told reporters, “If the measure of a person’s life could be quantified by the number of people that loved them then Katie, in her brief 3 ½ years, achieved well beyond all of us.”
Pictures (and context for which they may be used) here.
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.