Disposable: A Universal Design?

The following is piece I wrote immediately after striking out on my own in this field, and after meeting an advocate from Nigeria at the Affiliates in Action Conference in 2009 in Kansas City. (Check out AIA’s conference-it is simply one of the best events for the promotion of issues regarding inclusion and Down syndrome.)

I’ll admit I was taken with his lyrical voice and the lilting way he said my name, which made “Krista”, sound much more like an exotic flower than the hippy, slightly Danish name my parents gave me. In Kansas a number of weeks ago speaking at the National Down Syndrome Affiliate Conference, I had the good fortune to meet and become friends with the President of the Garkuwa Down Syndrome Organization in Nigeria Balarabe Mohammed.

Balarabe is charm personified. He is a passionate advocate for children and adults with Down syndrome and other disabilities. He speaks softly, in short sentences, clearly and articulately about the challenges facing a country where estimates put the number of citizens with Down syndrome alone close to 25,000.

It wasn’t until he began to tell the story of his most recent experience with his countries (and dare I say most countries) indifference to people with disabilities that my heart stopped mid beat and my hands became numb and cold.

You see Balarabe is a very sought after and successful contractor; he shared with me pictures of his most recent projects, solid sturdy buildings with a sense of style and purpose. One afternoon when the sun was particularly hot, and the day unseasonably humid, while he was unloading his truck of unusable building materials at the community garbage dump, he heard what he described as a low mewing sound. Not at all a cry or a howl, but a low constant garbled mew. Searching through the mountains of garbage bags and human detritus, he soon came upon a garbage bag tied tightly at the top in which he assumed was a kitten or puppy, the unfortunate casualty of a household with barely enough food to feed the human members of the family. As he untied the bag, he was horrified to find a very new born, umbilical cord still attached, very sick, but clinging to life, baby; a baby that upon closer inspection had Down syndrome.

He described the moment as providence.

At first I thought I didn’t understand his usage of the word: a translation issue? Soon he began to help me understand the sheer incalculable odds of his coming to this particular part of the garbage dump that takes up acres of land, the inconceivable chance of his hearing the baby’s muffled cries in the overwhelming industrial noise of the landfill, and the instinct to search through the mountains of waste, until he came upon this child. In his mind this was nothing short of divine.

I have not yet been able to erase this image in my mind.

As I lay in my hotel bed that night, far away from my babies, I considered the horror of what I had heard that evening. I ruminated on the fact that Canada and the US are both countries with stellar records for outreach and pre-natal care to even the most marginalized of women, it struck me that the elimination of an entire segment of the world’s population is no less horrifying in Nigeria than it is in Canada. In the US it is estimated that 80-95% of women with an early determination of Down syndrome will chose to terminate their pregnancies. Based on estimates, Canada’s termination rate is very likely similar. No definitive data is available due to privacy laws in Canada that make a woman’s decision to terminate her pregnancy a private one between a woman and her Doctor. Pre-natal care for most women in Nigeria is non-existent, let alone women having access to prenatal screening for Down syndrome and other disabilities.

Goldman in his 2006 study found in the US, 45% of Doctors considered their training on the impact of prenatal tests as inadequate or non-existent., and less than half of the Doctors in the survey could successfully describe what the tests were screening for. Sutter’s study in 2002 found that on average US Doctors spent 2.5 minutes counseling women under the age of 35 about prenatal testing, and in these 150 seconds a minority of Doctors admitted to discussing termination as result of these screening tests. Women are entitled to the most timely and accurate information that will help them make the best, most informed decision for themselves and their families.

Let’s not think for a minute that the consideration of citizens with disabilities as so much ‘flotsam and jetsam’ to be discarded from the human family when the load gets to heavy is an issue of the developing world. One only has to examine the pandemic planning policy as it relates to the distribution of respirators in Canada, to face the all too real presumed disposable nature of our most vulnerable citizens.

Smugly, we look at the massive orphanages full of children with disabilities in countries like Serbia and Kosovo and think…”well thank-goodness that doesn’t happen in Canada anymore” But what of the countless citizens who still live in Canada’s remaining institutions, or those that live at the mercy of service delivery systems that fail to see their unique and indisputable gifts of individuals.
A landfill, a denied respirator, an ill informed Doctor providing biased and outdated information to women, a group protesting the freeing of citizens with disabilities from institutions, torture administered in the name of behavior modification therapy, all means to the same end.

Here’s what I know to be true…we are not immune…in fact, we may, in a more sterile and palatable way, be handing out the garbage bags.