Tuesday, July 21, 2009

Disability is Natural...and Valuable

I'd been planning several posts (on early intervention, the role of parents as therapists, and the changing landscape for people with Down syndrome) when I read this post on Small Swift Birds.

I'll still be writing about each of the above topics, but the discussion of disability as a natural part of life is truly the thread that runs through all of these issues.

The idea that people with disabilities are an important and valuable part of life goes hand-in-hand with the idea that "disability" is natural. All levels of ability are natural. All people have value.

I've seen some disturbing pieces of writing recently, which suggest that people with Down syndrome should not be allowed to exist. These writers--their unbelievable arrogance and lack of compassion aside--are just missing the boat.

Just yesterday, I was sent a link to Why Trig has divided America, an article by Gary Bauer and Daniel Allott (which appeared on Politico). It highlights every aspect of the larger debate that's taking place all across this country (follow the above link for the rest of the article):
With the introduction of universal prenatal genetic testing, as well as more sophisticated and less invasive testing methods, many disability rights advocates worry about what former Washington Post writer Patricia Bauer predicts could be “the elimination of an entire class of people.”

In the midst of these powerful trends stands [Sarah] Palin. She understands that discrimination against people with disabilities is fueled by ignorance of what it is like to be, and to care for, a person with a disability.

Her advocacy is validated by the waiting lists of couples ready to adopt children with Down syndrome and other genetic abnormalities. And by the fact that those closest to people with disabilities are among the most vocal critics of universal prenatal genetic testing.

To many of the 400,000-plus Americans with Down syndrome and their families, Palin’s emergence marked the first time they felt their existence was embraced.

Palin is controversial, in part, because America is divided over disability. We’ve established laws and institutions that protect people with disabilities. But we also do everything we can to make sure they don’t see the light of day.

Trig is a reminder of our fierce ambivalence over disability. Every mention of his name is a pinprick to our conscience. Every photo of mother and son is a reminder of concepts — vulnerability, dependency and suffering — our culture no longer tolerates, as well as virtues, such as humility, dignity and self-sacrifice, it no longer extols.

Trig is also a reminder of an inescapable truth: Disability is an inherent part of the human condition. At a time of deep cultural divisions, 1-year-old Trig Palin represents the deepest division of all, between a culture that increasingly sees genetic perfection as an entitlement and a culture still rooted in the belief that human beings are defined not by their capabilities but, instead, by the very fact of their humanity.
Bridget turns three on Thursday. I have just finished a photo montage of this past year with her (I'll post a link on her birthday). I hope every photo is a reminder of the value of all life, and a testament to the beauty Bridget brings to our lives and to the lives of others...

2 comments:

  1. Thanks, Lisa. Loved this post -- and the one on Jen's site too. I'm stopping in at Amazon next to pick up the book -- I need the read. I keep thinking how much has changed (and how much has stayed the same) in the last 30+ years since I was a kid, not knowing anything about people with disabilities other than "short bus" jokes -- it's so sad and pathetic to me now. I hope the many parents like us (and love her or hate her, Sarah Palin too) are able to help pave a path of better opportunities and acceptance for our kids. Time will tell. Thanks again :)

    Sandy

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  2. Wow, what an interesting article. Thanks for posting.

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