Editor's Note

What Have We Learned?

In the late 1930s and early 1940s, there were Nazi Germany “mercy killing” programs for the disabled and sick. In 1976, the sci-fi film Logan’s Run had “Carousel,” a mandatory death ceremony for residents who’d reached age 30.

And today we have Great Britain’s Geoffrey Clark, a (now former) candidate of the U.K. Independence Party.

Clark, referencing the climbing costs of healthcare — particularly related to the United Kingdom’s publicly funded National Health Service (NHS) — suggested money could be saved if expectant mothers carrying babies with Down syndrome or spina bifida were forced to abort. The BBC quoted Clark, via his Web site, as recommending NHS policy be amended to support “compulsory abortion when the fetus is detected as having Down’s, spina bifida or similar syndrome which, if it is born, could render the child a burden on the state as well as on the family.”

On the other end of the age spectrum, the BBC reported that Clark also suggested scrutinizing medical care given to people over the age of 80 because it makes up a disproportionately large part of NHS’s overall budget. Instead, Clark says the U.K. could give “free euthanasia advice to all folk over 80” while legalizing euthanasia for people of all ages.

Condemnation for Clark’s remarks came quickly and loudly. His own party withdrew its support, and Clark acknowledged — in a letter to Shine, a British advocacy organization for people with spina bifida and hydrocephalus — “I have erred, and I do recognize my error in causing offense needlessly to several groups of people.… I apologize unreservedly.”

So many advocacy organizations today work to raise funds for research into the causes and possible treatments and preventions of conditions you work with every day: muscular dystrophy, multiple sclerosis, ALS, spinal cord injury, spinal muscular atrophy, cerebral palsy.

But as if living with progressive neuromuscular diseases and injuries, genetic conditions, etc., weren’t enough, people with those conditions also have to fight for something much more basic: The right for their lives to be considered inherently worthwhile. The opposite, in other words, of “the life unworthy of life,” which is how the Nazi party viewed people with disabilities.

In answering Mr. Clark, Jackie Bland, chief executive of Shine, said, “If tomorrow you were tragically injured in a road accident and survived severely disabled, perhaps with lower-limb paralysis like many people with spina bifida have, perhaps with brain injury and lifelong pain, would you want us to value your life?”

In his apology, Clark asked how he could do penance, and Bland suggested he “resolve to learn more about people with spina bifida, find out what you can do to stop the ongoing discrimination that they still have to face.”

Discrimination and ignorance does not always take such an obvious form as Mr. Clark’s, but it’s still right in front of us — and it needs to be fought with every weapon we can raise. In this issue, with its focus on adaptive automotive technology just in time for the annual NMEDA conference, we talk with NMEDA Executive Director Dave Hubbard about National Mobility Awareness Month and the organization’s ongoing efforts not just to reach and support people who can benefit from accessible automotive equipment, but to also teach people who don’t yet need it.

"If your comments have highlighted how far we have to go in getting a better deal for people with spina bifida, perhaps some good can be made of them," Bland says of Mr. Clark's idiotic statements. Indeed, his comments should remind us: We can never let our guard down. Stupid words that can lead to stupid deeds are closer than we think.

This article originally appeared in the February 2013 issue of Mobility Management.

About the Author

Laurie Watanabe is the editor of Mobility Management. She can be reached at lwatanabe@1105media.com.

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