Story URL: http://news.medill.northwestern.edu/chicago/news.aspx?id=3309
Story Retrieval Date: 12/12/2013 1:47:00 PM CST
The American Medical Association currently has no plans to meet with disability activists who protested in front of the AMA’s Chicago headquarters in mid-January.
Sharon Lamp of Des Plaines said she and 20 some other protestors left the Jan. 11 demonstration believing they had a commitment for a meeting in the near future over the so-called “Ashley treatment” of the disabled.
“The reason we left the protest when we did was because of (the AMA's) good faith belief and their promise to get back to us" the following week, Lamp said. More recently, Lamp and her associates were told that the AMA "didn’t want to meet and didn’t understand what the purpose of the meeting would be, something like that,” Lamp said.
The protest ended with an assistant to AMA CEO Dr. Michael Maves agreeing to arrange a meeting between activists and AMA representatives. Maves was out of the office at the time.
Jann Ingmire, director of media relations for JAMA and its archives, said Thursday she was unaware of any meeting being set up, however.
“I know that there is not going to be a meeting between the AMA exec and the protestors,” Ingmire said. “That is not going to happen.”
The protest stems from a Washington case in which doctors used high-dose hormones and a hysterectomy to keep a severely disabled girl permanently small. The parents of the 6-year-old girl (identified on a blog as Ashley) had sought the treatment, concerned that they would no longer be able to care for their daughter if she grew to her projected adult height of 5 foot 6 inches.
Ashley’s story was first reported in the October issue of the Archives of Pediatrics and Adolescent Medicine, a periodical of the Journal of the American Medical Association (JAMA) and Archives. Ashley is not identified by name in the article, however.
The AMA is editorially independent from its various journals, according to a Jan. 11 statement released by the AMA. The statement added that the AMA has no policy regarding the Ashley treatment.
Amber Smock is a member of the Feminist Response in Disability Activism, which organized the initial protest. She said her organization is working on a letter, phone call and fax campaign to urge the AMA to meet with activists.
“The goal is really to open discussion with the AMA and for the AMA to engage with the disability community," she said. “Now it’s a good opportunity for doctors and people in the disability community to come together.”
Smock said her organization and others will continue to press for a meeting to discuss issues sparked by the Ashley treatment.
“Right now we’re working on the meeting,” Smock said. “If they don’t (meet with us), we’ll just have to continue to advocate in our community. We’ve been waiting a long time for something like this to happen that will bridge the gap between disability and medicine."