Story URL: http://news.medill.northwestern.edu/chicago/news.aspx?id=1518
Story Retrieval Date: 8/23/2014 8:23:52 AM CST

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Activists demonstrate against Ashley treatment at AMA H.Q.

by Kelly Mahoney
Jan 11, 2007


Area activists protesting the so-called “Ashley treatment,” in which doctors stunted the growth of a disabled Seattle girl, won a potential meeting Thursday with the CEO of the American Medical Association.

A boisterous protest at the AMA’s Chicago headquarters on North State Street drew more than 20 area residents who chanted slogans such as “accommodations, not operations” and demanded the meeting. An assistant to CEO Dr. Michael Maves met with a representative of the group and promised to arrange a meeting sometime in the coming weeks, according to spokeswoman Jann Ingmire. Maves was out of the office.

“The contact has been made, but no meeting has been scheduled,” Ingmire said.

Ashley’s story was first reported in October 2006 in the AMA's Archives of Pediatrics and Adolescents, though the AMA and its journals are editorially independent of one another. Ashley has profound disabilities that prevented her from advancing developmentally beyond an infant. But Ashley’s parents became concerned about her rapid physical growth by age 6 and elected to prevent maturation using a hysterectomy and hormones.

“The parents particularly feared that continued growth eventually would make it untenable for them to care for their daughter at home,” wrote Drs. Daniel Gunther and Douglas Diekema in the article. Due to the treatment, the girl will never grow beyond childhood or mature into puberty.

Ashley treatment is “terrifying for those of us with disabilities,” said protestor Marca Bristo, president of Access Living in Chicago. “It’s like a moral abomination that our lives are valued so little that (people) shrink this little girl to make it easier to care for us,” Bristo said.

Veronica Martinez, a 20-year-old Chicago resident who said cerebral palsy, explained why Ashley’s story saddens her.

“They’re taking away a part of her humanity,” Martinez said. “She’s going to find out sooner or later with her female intuition.”

Chicago resident Gary Arnold said he thinks Ashley’s situation is indicative of a bigger trend.

“People with disabilities like us are facing barriers, but making us bed bound isn’t the answer,” said Arnold, who has dwarfism. “It’s not changing who we are, it’s changing society.”

Arnold said the AMA and the journals are influential in the community. He said that, in his opinion, publishing of Ashley’s story in some ways sanctions treatment of the disabled such as Ashley has received.

In written statements, the AMA has stressed its independence from the journals.

“The AMA does not have policy pertaining to the medical treatment referred to as the ‘Ashley treatment,’” the statement said.

Amber Smock, a member of Feminist Response in Disability Activism who organized the event, said the event was a success. She hopes that the AMA will push home care initiatives, which help disabled people with all the functions necessary to live a normal life at home.

“Our response is that we’re opposed to the Ashley treatment," Smock said. “We want the AMA to tell Congress that we need home support.”