Monday, January 29, 2007

FRIDA Thanks Our Friends!

FRIDA would like to THANK YOU and your friends/allies for faxing/calling/emailing the AMA on Friday! We heard people all over the country were getting into it. Vermont, New York, Oregon, Texas, South Carolina, Michigan, Indiana, Illinois (obviously) and on and on... It was great! We heard some people actually spoke to Dr. Sade. And Jon Burkhart was not in the office...he'll have a surprise this morning, thanks to you all!

Unfortunately, we have not yet got a set meeting date and time. You know what that means...more action! Over the weekend, FRIDA, with the support of Not Dead Yet and ADAPT, held a planning meeting to strategize our next move. We'll be sending out an alert this afternoon, so keep your eyes peeled! We have the force on our side, folks. It's incredible.

Til this afternoon! Power to the people!!!

Saturday, January 27, 2007

Update on AMA Campaign

Thanks to all of you across the US who called and emailed and faxed the AMA on Friday! Unfortunately, we do not yet have a meeting time and date, so we are laying plans for next steps. Those of you on my email list, look out for news on Monday, January 29. To join this list, please email me at

FRIDA would like to give huge applause to everyone in the disability community who has worked hard to keep the Ashley Treatment issue alive in the media. We have heard from pissed-off people all over America, parents and people with disabilities alike. If you have ever doubted in your heart for one tiny second that a person with a disability might just be less than a full human being, know that there are millions of people out there who believe otherwise, and who are ready to do something about it. The disability community truly has POWER. Thank you all.
FRIDA would like to recognize major disability organizations for opposing the Ashley Treatment. Susan Fitzmaurice of Michigan is keeping an excellent list of statements from these organizations. Please visit her site at: Don't forget to sign her petition against the treatment.
FRIDA would like to invite you also to view a YouTube video by A M Baggs on the autism experience, which is dedicated in part to Ashley X. For the video, please visit: Never assume.

I would also like to apologize for the delay in posting to this blog as FRIDA has been working mainly through e-mail alerts.

Again, the RESPONSE by the disability community on this issue is staggering. Take every opportunity you can to educate your community on the Ashley X case and to stimulate debate on the rights of ALL people with disabilities.

Thursday, January 11, 2007

(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.

Amber Smock
Chicago ADAPT

Wednesday, January 10, 2007

Some Good Blog Posts Regarding the Ashley Treatment Debate has several things on Ashley it is the january 5th entry entitled "Sigh"

Thanks to imfunnytoo for the links!!
For Immediate Release: January 10, 2007

For Information Contact:Sharon Lamp - (847) 894-4907
Stephen Drake - (708) 209-1500; (708) 420-0539
Amber Smock -

Feminist Response in Disability Activism (FRIDA)To Lead “Ashley Treatment Action”at the American Medical Association Headquarters

At 1 p.m. on Thursday, January 11, Feminist Response in Disability Activism (FRIDA), with the support of other disability groups, will stage an “Ashley Treatment” demonstration at the national headquarters of the American Medical Association (AMA) in Chicago at 515 N. State Street.FRIDA will demand that the AMA start practicing real ethical accountability and dialogue with the disability community.

The action is in response to the AMA’s sanction of the “Ashley Treatment” through its publication of the original case article in the Archives of Pediatric and Adolescent Medicine case. This AMA owned-journal went so far as to call for further “study” of the issue by subjecting more children to the same drastic surgeries and follow them over time.

People with disabilities and families nationwide have reacted with outrage to the drastic medical “solution” to what is actually a complex social problem of finding real supports for people with disabilities and their families. FRIDA is also not surprised that the initial recipient of the “Ashley Treatment” was a little girl, given that girls, and girls with disabilities in particular, are perceived as easier subjects for mutilation and desexualization.

Ana Mercado of FRIDA notes, “Our bodies really are the battlegrounds on which ethics debates are fought.” FRIDA seeks to protect our bodies from having to become battlegrounds in the first place. The issue at hand is not our bodies, but the choices that other people make for our bodies.

FRIDA is a group of radicalized women with disabilities representing ourselves and fighting for freedom for our bodies. FRIDA is supported in this action by Chicago ADAPT, the national ADAPT community, Not Dead Yet and Advance Youth Leadership Power (AYLP).


Feminist Response in Disability Activism
614 W. Roosevelt RoadChicago, IL 60607
Contact: Monica Heffner, (312) 253-7000

Tuesday, January 09, 2007

Send this action alert to everyone you know. Then give Seattle a buzz. Thank you.

ACTION ALERTFax/E-mail/Phone CampaignFeminist Response in Disability Activism (FRIDA), with the support of Chicago ADAPT, the national ADAPT community and Not Dead Yet, invites you to speak out about the “Ashley Treatment.”

Our Targets: Seattle Children’s Hospital staff involved in the case of nine-year-old Ashley’s growth attenuation and sterilization, as well as Melinda Gates, chair of the Seattle Children’s Hospital fundraising committee and Susan Macek, Director of Communications for Seattle Children’s Hospital. Why: To oppose their permission of what is now known as the “Ashley Treatment,” and to condemn further permission of such “treatments” for children with disabilities whose lives are not otherwise at risk.When: Tuesday, January 9, 2007, starting at 9 am in your time zone.

Contact Info:

Dr. Douglas Diekema
Phone: 206-987-2380
B-5520 – Emergency Medicine
4800 Sand Point Way NE
Seattle, WA 98105
Fax: (206) 987-3836

Dr. Daniel F. Gunther
Phone: (206) 987-2380
M1-3 – Endocrinology
4800 Sand Point Way NE
Seattle, WA 98105
Fax: (206) 987-3836

Susan MacekDirector of Communications, Seattle Children’s HospitalPhone: (206) 987-5201Pager: (206) 469-6310E-mail:

Melinda Gates (yes, Bill Gates' wife)
PO Box 23350Seattle, WA 98102
Phone: (206) 709-3100
Fax: (206) 709-3252
Ashley is a nine-year-old with a severe cognitive disability. In order to keep her small and more easily cared for by her family, doctors at Seattle Children’s Hospital are having her undergo hormone “therapy” to stunt her growth. In addition, they surgically removed her breast buds, uterus and appendix. The “Ashley Treatment,” as her parents call it, is a medical “fix” to serious social problems we face in America today. The first of these problems is a lack of quality home-based services for people with disabilities. The second is the social attitude that people with disabilities are less than human and therefore fair game for experimentation. The third is a lack of understanding of disability vs. illness: as Joe Hall of South Carolina has stated, “When I was born my parents knew that I would never walk, but they would have never thought it would be acceptable to cut my legs off.”

To review Ashley’s parents’ blog, please see:

To review one of the original articles as reported by the BBC, please see:

We need to let the Seattle Children’s Hospital and its fundraising chairperson know that the Ashley Treatment has not gone unnoticed by those of us who live with disabilities.
For more information, AND TO KEEP US POSTED OF YOUR “ASHLEY TREATMENT” ACTIVITIES, please call Sharon Lamp at (847) 803-3258 or e-mail Amber Smock at