(for those of you looking for the "meat" of the action scroll down past the initial stuff)
Report on the "Ashley Treatment Action"
On Thursday, January 11, disability rights advocates gathered in downtown Chicago with the intention of staging an "Ashley Treatment Action," in response to the case of nine-year-old Ashley X. of Washington State.
Ashley has multiple profound disabilities and does not talk or move on her own. Her parents sought home care supports but those did not work out. Instead they opted to care for her on her own and have her undergo a "treatment" that would enable her parents to more easily care for her. The "treatment" included a hysterectomy, removal of her breast buds, an appendectomy and ongoing estrogen hormone "therapy" to stunt her growth so that she stays small. The case has inspired controversy around the nation. Many disability rights advocates have opposed it.
In an effort to achieve some concrete change, Feminist Response in Disability Activism (FRIDA) led a coalition of Not Dead Yet, ADAPT and Advance Youth Leadership Power (AYLP) in an action at the national headquarters of the American Medical Association (AMA), located in Chicago.
We targeted the AMA because it sanctioned the "Ashley Treatment" by publishing the original article describing it in one of its publications, the Archive of Pediatric and Adolescent Medicine. In addition, the publication's editors recommended that the way to find out if the "Ashley Treatment" was beneficial was to perform it on other children.
Our demands were threefold. First, we asked that the AMA's Committee on Ethical and Judicial Affairs meet with a team of advocates from the disability community to review the case. Second, we asked that the AMA issue a formal statement of support for MiCASSA. Third, we asked that the AMA issue a statement condemning the "Ashley Treatment" for other children.
On Thursday afternoon, our coalition met up at a coffee shop, about twenty strong. (FYI having coffee before an action is a really, really, really good idea!) We would be joined by others at the site. We lined up and proceeded to the building housing the AMA offices. We arrived and attempted to enter through the accessible entrance. Security guards blocked the majority of the group from entering, citing the "fact" that the lobby was private property. Our group began entering through the *other* accessible door. Most of us made it in. Reporters had already arrived and had begun attempting to interview the protesters. Our negotiating team began attempting to meet with AMA CEO Michael Maves.
After several minutes of attempting to gather in the lobby, our team decided to move outside because we were losing the opportunity to get recorded on TV cameras. Our negotiating team remained inside to continue fighting for access (the Michael Maves kind). Once we moved outside, we faced a barrage of TV cameras, as well as print and radio reporters. The media presence was truly incredible and our coalition had worked very hard to achieve that. We whipped out our protest signs, which included slogans such as "Operations Not Accommodations" and "AMA: Stop Medical Oppression of Women." (Thanks to Sharon Lamp, who is DA QUEEN of good slogans!) Gary Arnold then led the group in a skit on how to apply for an ethics job with the AMA.
Then, while we waited for news of negotiations, we chanted and chanted and CHANTED!!! The police wanted us to move away from the building and gave us three warnings. The media were complaining they could not interview us, so we went ahead and moved farther away, so we got interviews and plus, the people looking down from the highrise building had a good look at the disabled people making a stink on the ground! The employees sure had an exciting day. Many came down to the lobby to observe what was going on.
After about 45 minutes, our negotiating team came away with a deal: apparently the CEO was on a plane somewhere and unreachable (so they say...). His secretary committed to securing us a meeting with her boss next week. You know what will happen if that doesn't happen....!!!!! So we will be following up with all of you for your support if they don't meet our promises!
At that point, we had a load of media coverage and as much of a win as we could secure before the paratransit rides arrives. So we called it a victory and chanted some more, yeah you know what it was..."The people united will never be defeated!"
The best thing about this action is the AP covered us with a photographer too, so the story is going out across the nation...and I just got word CNN included our action in a story. The other best thing about the action was the people who turned out and worked to get this organized. The energy was fantastic! Amazing! The best thing to happen to feminist/disability rights in a long, freakin' time! Many thanks to the following people who contributed in various ways:
John Jansa, Larry Biondi, Steve Drake, Ramona Harvey, Sam Knight, Diane Coleman, Rahnee Patrick, Ana Mercado, Sarah Triano, Marca Bristo, Sharon Lamp, Lauren Bean, Mike Hasler, Jim Glozier, Gary Arnold, Gabriela "I Lead Parades" Hernandez, Devon Whitmore, Jose Ocampo, Veronica Martinez, Jody Thomas, Wil Cowling, Gloria Nichols, Rob Rotman, William Owenson, Bob Kafka, Stephanie Thomas, Marsha Katz, Jeanine Bertram, Sarah Watkins, Joe Hall, Veramarie Baldoza, Janice Stashwick, Heather and Garland Armstrong, Mary Delgado, Sharon Snyder, Donna Shaw and many others who I apologize to for not having the names....and lots of others that offered support and encouragement. The disability community is wonderful...and ANGRY.
I also want to thank Donna and Martin Harnett for coming. Donna is Martin's mom and Martin has a severe disability similar to Ashley's. Martin's PA didn't show up this morning so Donna brought Martin to the action. Donna spoke to the news media today at our action. Thank you very much to Donna and Martin.
In particular I wanted to thank the negotiators: Sarah Triano, Diane Coleman, Lauren Bean and Marca Bristo. Gary was our skit dude, and Sharon Lamp was our street marshal and a media contact. Stephen Drake and Diane Coleman were super media callers. Thanks again to you all.
Keep up the debate! The time to act is NOW. Tell all the important people you know to make a public statement about this case.