In October 2006, two Seattle doctors published an article in the Archives of Pediatrics and Adolescent Medicine (APAM) about a new “treatment” they called “growth attenuation,” which they had used on a six-year-old girl with static encephalopathy, or a form of cerebral palsy. 

The girl, now known as Ashley X, is nonverbal and cannot move herself.  Her parents were worried about having to institutionalize their daughter as she got older and too big for them to carry.  They requested that her doctors keep their daughter short through hormone therapy.  After getting approval from the hospital ethics committee with a presentation from the parents, the doctors went ahead and started Ashley on hormone therapy that today has her, at age nine, at around four and a half feet tall.  Presumably to prevent side effects from the hormones, Ashley’s uterus was also removed. 

The initial public reaction to the case was limited and sensational.  A story about the case was passed around in the disability community, but it was not until January 2007 that activists felt compelled to take action.  Ashley’s parents published a blog explaining what they termed “the Ashley Treatment.”  In addition to the hormone treatment and the uterus removal, they had also had Ashley’s breast buds removed (allegedly for fear she would develop breast cancer and be uncomfortable with large breasts) and her appendix removed.  The parents also did not consider community supports a viable option to help care for Ashley. 

Our community was shocked.  Young people in ADAPT initially immediately issued a statement opposing the “Treatment.”  Then FRIDA, in alliance with ADAPT and Not Dead Yet, staged a direct action on January 12 at the American Medical Association, which publishes the APAM.  Our coalition demanded:

 

1. That the AMA officially oppose the “Ashley Treatment.”
2. That the AMA support the Community Choice Act.
3. That the AMA establish a committee within the AMA to represent the interests of patients and doctors with disabilities.

The action garnered international media coverage amid a storm of debate on the “Ashley Treatment.”  Not since the case of Terri Schiavo had we seen such a level of discussion on the rights of people with disabilities.  The coverage was so far-reaching that FRIDA was actually contacted by radio shock jocks on the West Coast. 

This campaign, and our efforts to date, are documented extensively in our blog.

Some important outcomes to date are: Seattle Children’s Hospital was found to have broken the law because there was no court order for Ashley’s sterilization and is now in a settlement agreement with the Washington Protection and Advocacy Agency; the AMA now supports the Community Choice Act; and FRIDA is working with doctors to develop a committee for representation of disability interests in the AMA.  Many disability organizations came out with statements against the “Ashley Treatment,” one of the most unified responses we have seen in a long time.  If you are interested in working on this campaign, please contact us.

For more information on this topic, you can also check out:

Ashley’s Parents Blog

Disability Community’s Response to Ashley X Case

FRIDA and Allies Go to AMA

Rebecca Clarren Article at Salon.com

ADAPT

Not Dead Yet

This entry was posted on Sunday, November 25th, 2007 at 6:52 pm and is filed under Take Action. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.