Thursday, June 12, 2008

Harriet McBryde Johnson: able advocate

The eloquence of facing your challengers and speaking the unspeakable takes a bittersweet twist this morning in a New York Times appreciation of author, attorney and advocate Harriet McBryde Johnson, who died June 4 at age 50. Johnson, herself a wheelchair user with a muscle-wasting disease for much of her life, was best known for "Unspeakable Conversations," an essay she wrote in the New York Times. In it, she challenged the idea that parents should be given the legal right to end the lives of infants who would grow up to be severely disabled--an idea put forth by Princeton professor and philosopher Peter Singer. She writes about going to Princeton for two speaking engagements to address the issue, noting, "I am the token cripple with an opposing view," and that view was that "the presence or absence of disability doesn't predict quality of life."

The essay describes her journey to make those two speeches, illustrating, along the way, what it means to live a full life as a person with a disability. Here's a sample, as she arrives at the Princeton hall where the first speech is to take place:
The elevator doubles as the janitor's closet -- the cart with the big trash can and all the accouterments is rolled aside so I can get in. Evidently there aren't a lot of wheelchair people using this building.

We ride the broom closet down to the basement and are led down a long passageway to a big lecture hall. As the students drift in, I engage in light badinage with the sound technician. He is squeamish about touching me, but I insist that the cordless lavaliere is my mike of choice. I invite him to clip it to the big polyester scarf.

The students enter from the rear door, way up at ground level, and walk down stairs to their seats. I feel like an animal in the zoo. I hadn't reckoned on the architecture, those tiers of steps that separate me from a human wall of apparent physical and mental perfection, that keep me confined down here in my pit.
If women see hurdles to public speaking in general, that passage tells us there are even higher hurdles they might face. Calling Johnson "an eloquent defender of the rights of the disabled," Times editorial board member Lawrence Downes notes:
"...her rebuttal boiled down to a simple: How dare you? How dare you decide that certain people with limitations are nonpersons with no right to exist? How dare you presume to define “quality of life,” for me or anyone else, to set the value of a disabled life lower than yours, or to conclude that such a life lacks the potential for happiness and dignity because you cannot imagine how it could?
How, indeed. You'll find Johnson's several books and writings here.

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