November 22, 2005

And now for the 'wrongful-life' discussion

Lawrence Carter-Long writes,

Those still reeling from the Grey Lady placing the perspectives of real, live disabled people front and center in their coverage of the squirm-inducing trend to genetically test disabled folks out of existence (read NYT story here, and Mary Johnson's 11/21 blog entry about it here ) might do well to consider what may well be the most extreme, and perhaps least discussed, facet of the debate.

The disability-friendly perspectives featured in the NY Times article, while overdue, is not new thinking to most readers of Ragged Edge. But it is refreshing -- and just as striking -- to see our views in print.

We've come to expect "better dead than disabled" viewpoints presented primarily by non-crips in mainsteam coverage of disability issues, but what do we do, to paraphrase Pogo, if we turn to face the enemy and the face looking back is us?

On Nov. 11, Court TV's website detailed the story of Alexia Harriton, 24, a blind/deaf woman suing Dr. Paul Stephens for a "lifetime of suffering" in Australia's first "wrongful life" suit. Harriton claims her mother would have aborted her had she been aware of the potential birth defects associated with the rubella which was misdiagnosed by the doctor in the first trimester of her mothers pregnancy. Since the statute of limitations has expired for Harriton's parents, the suit is being brought in Alexia's name, seeking payment for the costs of the medical treatment she needs to survive.

Harriton's suit, initially filed in 2002, was denied by lower courts on the grounds the doctor did not breach his duty to the mother or the child. "The defendant has not caused the infant's injury but merely failed to prevent its birth," Justice Timothy Studdert wrote in a June 2002 judgment.

"Its" birth????

Troubling semantics aside, so-called "wrongful life" suits are hardly new. The New York Court of Appeals wrote in a 1986 decision rejecting a similar "wrongful life" claim, "Whether it is better never to have been born at all than to have been born with even gross deficiencies is a mystery more properly to be left to the philosophers and the theologians ... the implications of any such proposition are staggering."

If history is any indication, people with disabilities -- those who wish to live, that is -- might rightly dispute the relegation of the "wrongful life" issue to the clergy and philosophy crowd, still the potential for harm clearly goes far deeper than the court cases themselves.

The internalization of society's fear -- and perhaps, flat out hatred -- of disability may prove to be a much bigger stumbling block for disabled folks than the us vs. them, disabled vs. non-disabled paradigm we've fought this far. Neglecting the enemy within may prove to be our undoing -- for fighting that enemy may be our biggest battle yet.

Lawrence Carter-Long is Network Coordinator of the Disabilities Network of NYC and Contributing Editor of Satya Magazine.

Posted on November 22, 2005