Thursday, March 13, 2008

CNN interviews parents of Ashley X posted an email interview with the parents of Ashley X on March 12, which is the parents' first media interview. They are the Washington State couple who in 2006 received permission to surgically and hormonally stunt the growth of their 6-year-old disabled daughter so her body would remain small. (I wrote about the "Law & Order: SVU" episode that referenced it in January.)

The parents seem to be framing their perspective around what they call a new category of disability -- "pillow angels." These children are "permanently unabled," they say, and will remain at an infant level mentally and physically. They claim that "increased weight and height are the worst enemy for pillow angels."

Controversy has surrounded the parents' decision to stop their daughter's growth, and disability advocates explain "that it is never ethically acceptable to medically alter a human being for the benefit of caregivers. Such unnecessary medical procedures without therapeutic indications demean the essential humanity of the person undergoing them and of all people with similar disabilities."

Ashley's endocrinologist Dr. Daniel Gunther, who created the procedure to stunt Ashley's growth, committed suicide last fall. Ashley's parents discuss that event and the criticism from disability advocates in the interview. The parents say, "Ashley is in a vastly different category of disability than someone who is able to blog and write e-mails and can make decisions for themselves. A chasm separates the two, not a slippery slope like some fear or claim."

Hundreds of people with disabilities and disability organizations have come together to sign "A Statement of Solidarity for the Dignity of People With Disabilities," which is a response to Ashley's treatment ( Advocates say they sympathize with Ashley's parents but explain "the real issue is the lack of support, care, and help from our social, medical, and civil establishments for Ashley's parents and for all those who care for people with disabilities. "