Disability Blog Carival, Ashley X, and Other News

The 33rd Disability Blog Carnival is up posted on Wheelie Catholic's blog. These carnivals have really good writing and perspectives on disability--check it out!

Next, consider contributing to the Blog Swarm March 30th to support ratification of the UN Convention on the Rights of Persons with Disabilities. Find out more here.

Also, Ashley X's parents have been interviewed on CNN. Their feelings about the surgeries they had performed on Ashley when she was 6 to stunt her growth have not changed. My opinions remain the same, further solidified by another year of following stories about the utter disregard in our world for the rights of people with disabilities.

(I have a picture idea, but I will have to take it later!)

FRIDA has some ideas about making sure the perspective of people with disabilities who feel endangered by Ashley X-type decisions are heard. Check out her post here.

Also, check out JFA for an action alert to get IDEA funded. It will take 2 phone calls to your senators' offices (they even have a link to find your senators' contact info.

Katie

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.

Peter Singer and Ashley

I knew it was only a matter of time before Peter Singer weighed in on the Ashley controversy. Ashley is the little girl with a disability whose parents convinced doctors in Seattle to remove her breast buds, perform a total hysterectomy and treat her with hormones when she was six to prevent her from ever growing in stature and sexual maturity. Peter Singer is the bioethicist from Princeton whose remarks have angered and frightened people with disabilities for years. In the past Singer has stated that killing babies with disabilities would be acceptable because their quality of life would be so poor. When adults with disabilities assured him that they indeed had quality lives, Singer stated that they were not qualified to make that assessment. Singer is also known for writings where he states that animals have more status and value than people with disabilities.

His op-ed piece in the New York Times on January 26th held no surprises. He stated that the modifications that were made to Ashley were acceptable because Ashley is precious not for “what” she is, but because her family loves her. Singer once again asserted his view that a person’s value is not inherent in them, but assigned to them by others.

This view is natural to human beings. Every two year old that smashes another child on the head to get a toy holds the same view. Every teenager who exerts, or succumbs to peer pressure holds that belief, as does every competitive consumer who buys their car, house or clothing to ‘keep up with the Joneses.’

The problem is of course, if someone else can assign your value, someone else can take it away. Like deadly nightshade, this view is natural, and deathly dangerous.

Every person that tolerates abuse and every abuser hold this value.

Every pogrom, holocaust and ethnic cleansing in history, from Ancient Egypt to today in Darfur has its roots in the same philosophy. All forms of exploitation, slavery, hate crimes and even road rage are based on this same belief. This philosophy provides the foundation for a slippery slope that has brought avalanches of horrific behaviors since the dawn of time.

As Singer himself points out, “natural” does not necessarily mean “better.”

There is an alternative to this inborn and common philosophy of course and that is the belief that everyone’s value is inherent in them. In Singer’s statement he tries a little verbal sleight-of-hand and substitutes the word “dignified” for “dignity.” The point he attempts to obscure is that these words are not synonyms. ‘Dignity means worthiness and value. ‘Dignified’ means behaving in a proper and respectable way.

When dignity is inherent in a being, dignified behavior is an interesting aside, appreciated but not determinant of worth. This philosophy is more complex, but it protects everyone—the able as well as the frail, the flawed, and even the sometimes just plain foolish.

If Ashley’s and everyone else's’ inherent value were presumed perhaps we would not subject her to surgical procedures and risks that we would not consider for a non-disabled person.

If we championed a belief in everyone’s inherent value we would apply technology, relationships, innovation and any other resources we had to adapt the environment, the community and even the world to meet the needs of Ashley and her family instead of resorting to using medicine to neuter her and stunt her growth.