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.
In the meantime, there are three significant websites FRIDA would like to ask you to visit.
Martin Harnett's Website: http://martintreatment.spaces.live.com 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: http://www.johnhockenberry.com/Blog/EDADA4E6-82AC-4B28-9525-3242F18F772A.html 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 Salon.com: http://www.salon.com/news/feature/2007/02/09/pillow_angel/ 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.