Language

Back 7 or 8 years ago I was asked to speak to the staff at a local school about Down syndrome. I started with a true/false quiz and then spent time dispelling common myths, misinformation and replacing their pre-conceived notions with accurate information. I talked about chromosomes and challenges, potential and possibilities and then I opened the floor up for questions.

I answered a couple innocuous questions and then called on a woman in the front row whose hand was up. She looked at me and said, “So, what do I do when a downy…..”

To be honest, I have no idea what the rest of the question was. My ears started to burn and I got completely flustered. A DOWNY???????? Isn’t that a FABRIC SOFTENER????? I nearly died. I could feel my face burn—my ears stayed red for hours.

I don’t know what I actually said to her—I didn’t yell or ridicule her so I think I get extra credit!

From that day to this I begin most presentations by introducing and explaining the use of person-first language. The best defense is a good offense!

Person-first language is the practice of saying “a person with a disability” or “a child who has Down syndrome” rather than saying “the disabled” or “ a Downs child.” It is one more tool in the arsenal against prejudice.

It is extraordinary, but many people do feel that because they know a diagnosis they know the personality, characteristics and even the future of a person who has a disability. I can’t tell you the number of people who told me, before my daughter was even a year old, how placid (or stubborn) she would be, about weight problems and learning issues and what kinds of life she would have—she was a BABY, for Pete’s sake!

By making things a bit more cumbersome person-first language interrupts the flow of our common thinking and helps us focus differently. Keeping the human being in the priority position in our thoughts and in our sentences makes it more difficult to make a disability the center of our relationships. As the case of Katie McCarron illustrates focusing on a diagnosis and losing sight of the human being who has it can be carried to dangerous extremes.

Author and speaker (and fellow Partners in Policymaking graduate), Kathie Snow, has written and spoken extensively on the value of person-first language. She has created a handy reference sheet and she uses a quote from Mark Twain that I just love:

“The difference between the right word and the almost right word is the difference between lightning and the lightning bug.”

Or, as the Bee Gees used to sing, “It’s only words, but words are all I have to take your heart away.”

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.