Story URL: http://news.medill.northwestern.edu/chicago/news.aspx?id=4187
Story Retrieval Date: 3/8/2014 1:09:46 PM CST
After five weeks of protests, Chicago-area disability rights activists gained a meeting with the chairman of the American Medical Association Tuesday to discuss the much-publicized Ashley X case.
Five representatives from the disability community met with Dr. Michael Maves, CEO and Chairman of the Board of the AMA at the Chicago headquarters, to discuss the so-called “Ashley treatment,” in which a 6-year-old girl was purposely made small for life.
The case was first publicized in the October edition of the Archives of Pediatrics and Adolescent Medicine.
“I think it was very helpful from an educational standpoint,” Maves said regarding the meeting.
In the journal, a group of doctors reported how they used high-dose hormones and a hysterectomy to stop the profoundly disabled girl's growth. The procedure was requested by the Washington girl’s parents, who feared they would be unable to care for her at home if she reached her projected height.
Activists the AMA to support legislation to assist the disabled, to oppose "Ashley treatment," and continue meeting with the group.
Disability community activists urged Maves to review the Community Choices Act of 2007, which moves resources from institutional care to home care. This bill would have given Ashley’s family more resources to care for her.
“[The bill] is very consistent with AMA policy,” Maves said. “We’ll certainly take a look at it and compare it with our policy and if it’s consistent with our policy, we will support it.”
The AMA has stressed in written news releases that the peer-reviewed journal Ashley’s case appeared in is editorially independent from the AMA. Maves said he encouraged activists to write a letter to the editor of the journal.
Bensenville resident Diane Coleman is the president of the Forest Park-based Not Dead Yet, a disability group that opposed euthanasia. She attended the meeting and said she would consider a letter.
“I think that’s probably something we will do, but there’s no obligation on their part to print the letter,” Coleman said.
Activists also brought up at the meeting the idea of the AMA developing a policy against Ashley treatment. Maves said policy is made by the AMA House of Delegates, which will meet in June in Chicago to discuss pediatric consent.
“That is going to be discussed and it wouldn’t surprise me if the Ashley X case came up,” Maves said.
Coleman said the disability community representatives asked if they could meet with AMA representatives again to discuss further issues.
“There’s a lot to talk about in the disability community,” Coleman said. “The medical community and the disability community have a long history and it hasn’t been a relationship of equal power.”
Maves said he will discuss activists’ proposals internally and reply to them in writing by March 6.
Amber Smock, a member of the Feminist Response in Disability Activism, said she thinks the meeting went well.
“We do believe this was an important meeting to start dialogue that will affect millions across the U.S.,” Smock stated in an e-mail. “We were able to present all of our proposals and I hope that we can begin to move positively on those.”
Coleman said she hopes the meeting will begin a dialog.
“We don’t expect everything to happen overnight,” Coleman said. “We’re in it for the long haul.”