Saturday, February 24, 2007

So We Had the Meeting. What's Next? (And Some Links You Should Visit!)

Yes, on Tuesday, February 20, a team of five women representing FRIDA, ADAPT and Not Dead Yet met with AMA CEO Dr. Michael Maves, AMA Chairman of the Board of Trustees Dr. Cecil Wilson, and AMA Senior VP for Communications Mike Lynch. In addition, AMA communication staffer Melissa Smith was present.

Our team included Diane Coleman (Not Dead Yet), Donna Shaw (FRIDA), Donna Harnett (a mom of an 11 year old with profound disabilities and a FRIDA ally), Rahnee Patrick (Chicago ADAPT and FRIDA) and myself, Amber Smock (FRIDA and Chicago ADAPT).

A whole lot of people helped us out in preparation!! For every person who went to the meeting there were probably about at LEAST 10 to 15 people weighing in directly with advice and support. That's a conservative estimate. Thanks also to Access Living for interpreting support.

We laid out our demands and proposals as follows:

That the AMA issue a resolution opposing the Ashley X case.

That the AMA support the Community Choices Act.

That the AMA establish an ongoing series of meetings with the disability coalition to pursue the following proposals with their Ethics Group: that there be an Ashley X discussion panel at the next AMA convention in June; that a disability medical ethical protocol be developed in conjunction with the disability community; that the Council on Ethical and Judicial Affairs review the Ashley X case with us; and that we work together to develop disability sensitivity and awareness programs in AMA programs such as STEP, which works with medical schools.

AMA CEO Maves is to respond to us with a letter by March 6 with the AMA's decision on whether to meet these demands.

We in the coalition were excited to meet with the AMA to, for the first time ever, engage with a medical professional organization on issues related to disability ethical concerns. Meeting with the CEO and Board Chair is key to real engagement with the AMA as a whole.

We want to once again thank everyone who has supported this campaign through faxes, calls, emails and direct actions. All of our efforts together made this meeting happen. Our will to change society for the better is amazing and hopefully we can turn this into a meaningful partnership with the AMA. YOU ARE TERRIFIC.

Stay tuned!

In the meantime, there are three significant websites FRIDA would like to ask you to visit.

Martin Harnett's Website: Martin's family has created this website as their answer to the Ashley X case. They do not sugarcoat the reality of living with a person with severe disabilities; however they make their case for choosing not to pursue the medical solution that Ashley X's family chose.

John Hockenberry on the Ashley X Case: Hockenberry's blog post is titled "Ashley X: Straight On Till Mourning" and most significantly comments on the nature of the covenant of parenthood.

Dissent Among the Doctors, as told by Rebecca Clarren found that doctors at Seattle Children's are not as unanimous in support of the Ashley X case as was originally reported. In addition, doctors who deal with people with disabilities across the country came out in opposition.

Friday, February 16, 2007


That's right folks, on Tuesday, February 20 at 2 pm, FRIDA/ADAPT/Not Dead Yet is scheduled to meet with AMA CEO Dr. Michael Maves and AMA Board Chairman Dr. Cecil Wilson, who is in Chicago from Florida for the day. At this meeting, we will open dialogue on our demands. Many thank yous to our faithful feminist freedom fighter Sharon Lamp for serving as our AMA phone contact!

Many thanks also to everyone across the US who called and emailed and faxed various members of the AMA over the last month. FRIDA, ADAPT and Not Dead Yet are aware that there have been many who have been working behind the scenes to get the AMA to meet. Also, there has been incredible informaion sharing between diverse advocates. Together, we have all created some historically significant pressure to seize on an issue to expose real problems. FRIDA/ADAPT/NDY applaud everyone in our community for their UNITY!

Remember, this is only one step in our campaign! Right? Smile. So that means we gotta prepare for this meeting...and keep you guys posted, of course! Please contact us if you feel there is information we should have prior to the meeting.

Congratulations to everyone!

Monday, February 12, 2007

FEBRUARY 12. AMA, It's the Last Day.

Today is the last day for the AMA to respond to our demands regarding the Ashley X case. We have heard nothing so far. Let's go get em folks!!!!!! Just remember how many people are PISSED OFF about this case!

We have a bit of a different tactic today though, keep reading.

Today, the AMA is at the JW Marriott Hotel because their Advocacy Conference starts tomorrow. Let's try buggin' em at the hotel. Ask for Doctor Maves, Doctor Plested or Doctor Sade (you choose!). The phone number is: 202-393-2000. The fax is: 202-626-6991.

Here is our original basic letter:

Dear Drs. Maves, Plested and Sade,

Feminist Response in Disability Activism (FRIDA), joined by Chicago ADAPT and Not Dead Yet, and with the support of the national ADAPT community, urges the AMA to set up a meeting with us regarding ethics and disability in the case of Ashley X BY 5 PM CST MONDAY FEBRUARY 12.

Through Jon Burkhart, the AMA Chief of Staff, Dr. Maves has said that he does not feel a meeting with the disability community would be fruitful. We beg to differ. If the AMA is truly dedicated to discussing all angles of controversial medical cases, an AMA meeting with representatives from our coalition would be extremely fruitful and mark a historic step towards building a bridge between our communities.

We ask of Drs. Maves, Plested and Sade that a meeting time and date be established for the purpose of a dialogue on the Ashley X case between our coalition, the AMA Council on Ethical and Judicial Affairs (CEJA), and the AMA Board of Trustees. We would like to review the Ashley X ethics situation with CEJA and address support of legislation for home-based supports with the Board of Trustees.

Please contact FRIDA via Sharon Lamp at (847) 803-3258 with a time and date to meet with our coalition by 5 PM CST MONDAY FEBRUARY 12.


Feminist Response in Disability Activism (FRIDA)
With the support of Chicago ADAPT, the National ADAPT Community, and Not Dead Yet

The regular contact info is:

Dr. Michael Maves
CEO of the AMA
Via Jon Burkhart, Chief of Staff voice: (312) 464-4344
Jon Burkhart's e-mail:
AMA Fax: (312) 464-4184

Dr. William G. Plested III
President, AMA
AMA Fax: (312) 464-4184

Dr. Robert M. Sade
Chair of the AMA Council on Ethical and Judicial Affairs (CEJA)
Voice: (843) 792-5278
Fax: (843) 792-8286
Thanks once again to all of you!!!! We will send an update if we hear anything, and if we don't, you know what's next....MORE ACTION!!!
Feminist Response in Disability Activism Hosts Speakout to Demand
The American Medical Association Engage on Disability Ethics

(Chicago) On February 7, Feminist Response in Disability Activism (FRIDA) hosted a speakout with leading Chicago-area disability rights groups on FRIDA’s campaign to meet with the American Medical Association (AMA) regarding the ethical issues raised by the case of Ashley X. The AMA has refused to meet with FRIDA and their allies for over a month. The conference was held at Access Living of Metropolitan Chicago.

Ashley X is a nine-year-old girl with a profound cognitive disability. At the first signs of puberty when she was six, her parents approved a “treatment” which included a hysterectomy, removal of breast buds and massive infusions of estrogen, all with the effect of maintaining Ashley’s childlike size and appearance for the rest of her life. Disability rights advocates worldwide have since united in opposition to the ethics of the case.

Speakers included Monica Heffner, a FRIDA member; Marca Bristo, President of Access Living; Rahnee Patrick, Chicago ADAPT; Donna Harnett, mother of a son with profound disabilities; Diane Coleman, co-founder of Not Dead Yet; Larry Biondi, Progress Center for Independent Living; and Mary Kay Rizzolo, Associate Director of the Institute on Disability and Human Development, University of Illinois at Chicago.

Rizzolo expressed the fundamental outrage of those present when she said, “Disability is not undignified. Nor is reproductive health offensive. There is no indignity in being a sexually mature adult with significant functional limitations.”

“If any other recognized minority group requested a meeting to discuss disparities in medical treatment, it is hard to imagine that the AMA would refuse. Disability groups deserve the same respect and consideration that would be given to other minority groups,” stated Coleman.

Amber Smock of FRIDA said, “Our efforts to meet with the AMA will continue because this is literally a life-and-death issue for people with disabilities. As a community, we must hold medical professional organizations and ethics committees accountable for their violations of our bodies.”

Wednesday, February 07, 2007

FRIDA Statement As of Wednesday, February 7, 2007

On January 11, Feminist Response In Disability Activism led a coalition of people with disabilities in an action at the American Medical Association to demand three things. First, that the AMA meet with our coalition to review the ethics in the case of Ashley X. Second, that the AMA issue a resolution opposing the decision reached in the case of Ashley X. Third, that the AMA support social solutions to social problems by endorsing MiCASSA, the Medicaid Community Attendant Services and Supports Act.

The AMA promised that day to work on setting up a meeting with CEO Dr. Michael Maves. The AMA has failed to uphold that promise and in fact has stated that they will refuse to meet with us. FRIDA stands here today with our allies to ask once again for a meeting with the AMA by February 12.

FRIDA feels the AMA’s refusal to open a dialogue with our coalition is a symptom, so to speak, of doctors’ disconnection from the everyday lives of real people with disabilities.

Disconnection is fatal. It allows people to treat one another as though they were less than human. Disconnection led us to the practice of forced sterilization in this country. Over 60,000 Americans were sterilized without consent before protective laws were passed. Members of the medical community, who were also prominent eugenics leaders, promoted the old laws that allowed sterilization.

Disconnection led us to cases like that of Baby Doe, who was born with Down syndrome in 1982. Baby Doe’s doctors advised his parents not to approve a surgery that would unblock Baby Doe’s esophagus, because the baby’s death would leave everyone better off. So Baby Doe starved to death at one week old. 20 years ago, the euthanasia of newborns was commonplace. Baby Doe’s case, and the case of Baby Jane Doe, led to federal legislation forbidding the withholding of treatment from disabled newborns.

Disconnection has led us to the case of Ashley X. Little is understood about the potential of people with what appear to be profound cognitive disabilities. While Ashley may not be able to speak English or solve math problems, we cannot so easily define her capacity for emotion and identification. FRIDA is offended by the effort to label Ashley and make her less than human. Every effort should have been made to preserve Ashley’s bodily integrity. Ashley was not at risk of death. The removal of her breast buds and uterus, along with her growth stunting, are not a 100% safeguard against the uncertainties of the future. As women with disabilities, FRIDA is angry that in a nonmedical situation, medical means were used to solve a social problem.

Last December, the United Nations passed a Convention on the Rights of People with Disabilities, which reads in part, “Every person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others.” Baby Doe had to die for federal legislation that saved the lives of others. What will it take to protect the bodily integrity of people like Ashley, who are not ill, only disabled?

Many doctors have worked to speak out on this case, most notably Dr. Henry Betts, who is the former CEO and President of the Rehabilitation Institute of Chicago, or RIC. RIC is the number one rehab hospital in the country. Dr. Betts wrote a letter to the President of the AMA requesting that the AMA meet with us. The AMA has chosen to ignore Dr. Betts.

The AMA is out of touch with disabled people. 11% of American children have disabilities. One in five Americans in the general population have a disability. We in FRIDA want to know why the AMA refuses to engage on disability issues, a topic of pressing concern to so many of us. FRIDA asks the AMA to today begin seeking social solutions, not medical “fixes,” to social problems.

Monday, February 05, 2007

FRIDA Press Conference Wednesday Feb 7, 11 AM

Friends, thank you for your patience. The final info for the FRIDA press conference is:

Wednesday February 7, 11 am to 12 noon
Access Living 614 W. Roosevelt Rd
Speakers will include representatives from FRIDA, Not Dead Yet, a parent, and others from our coalition/community
We will be asking, through the media, that the AMA engage with the disability community according to the FRIDA demands.

Please, please make time to attend this event if you can. Also, please take the time to sign the Solidarity Statement against the Ashley Treatment at So far over 430 people from 73 organizations and 12 countries have signed it.

Below we have pasted a story that ran in the Chicago Defender last Thursday. Jann Ingmire, director of media relations for JAMA and its archives, says the AMA doesn't plan to meet with us. OK folks, that means we need to show them some power!!!! See you Wednesday.

The Chicago Defender
Activists for disabled maintain AMA shunned them

by Kelly MahoneyFebruary 2, 2007

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 more than 20 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."