Have you heard about Nick Vujicic, a man with no arms or legs who has found a way to be independent? http://www.lifewithoutlimbs.org

If I can still add value to someone’s life or give and make a difference then I want to stay alive. If I am alive then I believe there is some value I can give the world. Otherwise God would let me go.

David
JRS Medical

As others have written, many who answered this survey probably did so out of ignorance. In all likelihood, they’ve never met anyone with a disability. The NDSC is currently launching its “We’re More Alike than Different” national awareness campaign, primarily aimed at OB/GYNS and teachers, but also to the general public to help share the reality that individuals with disabilities — in this particular case Down syndrome — live whole, happy and contributing lives.

My adult patients have fought infections and other debilitating conditions to try to maintain their life. They LOVE being alive. None of them has ever expressed a desire to die because of their disabilities.

My husband has multiple sclerosis. He flat refuses to give in to the disease and disability he has. He absolutely does not feel that he’d rather die… but he is also assured of what his afterlife will be, so he’s not scared of death, either.

Two of my children have Down syndrome (Trisomy 21). They are wonderful, delightful and precious children. I can’t imagine what life would be like for me without either of my precious children in my life. I’m SO thankful that their birth mothers chose to give them life, despite their disabilities! Life is precious, no matter WHAT your disability is!

Could it be that it’s easier to pay lip service to a concept that one doesn’t vividly comprehend, e.g. ‘I’d rather kill myself than live in a wheelchair,’ than it is, as Victoria suggests, to unlearn what we ‘know’ to be right? There is no black and white, and it’s taken me ALL my forty years of education to learn that I know absolutely nothing. But hey, I’m hoping to take classes this autumn!

Victoria Miller: Fabulous site on T18. Beautifully written, sensitive and highly informative. I have started learning from you already today. Keep up the great work.

downsdad

I think those of us whose own ego/identity are somehow tied tightly to our own sense of “intelligence” and that being the source of ALL control in life — fear not only disability but also having children who don’t aspire to college (gasp!) or excel academically. And then to add the possibility of cognitive disability the “fears” compound exponentially.

When focusing on building working alliances with physicians, we find that they are especially defined by these personal fears in large numbers. And thus their characterization when “diagnosing” disability are, as often as not, are shaped most by these personal “biases” that we share as able-bodied humans.

It is work to “unlearn” these biases. And I hope to continue learning where the dark corners still reside in my own thinking.

I know many disabled adults, teens and children living very full lives. Some were disabled at birth, some later in life. I think if you asked any number of these folks, they would be happy to tell you life is better than the alternative.

A more comprehensive survey would target a very different population and pose the question “Would you prefer to live with your disability or be dead?”

I am, in fact, the parent of a disabled young adult who was born with Down Syndrome. Had I known of her disability before her birth, I might have deprived myself, and countless others, the profound pleasure of knowing and loving an individual who is living life with grace and good character and who, all too frequently, puts my own life and accomplishments to shame.

I wonder how a severe disability was defined for those polled. I wonder if some people were thinking in terms of being on a life-support system.