I had a prior post regarding the protest in Chicago by the activist groups FRIDA. (The group Not Dead Yet and ADAPT, both disability civil rights activist group, protested with FRIDA at the American Medical Association headquarters.)
The latest developments-- the AMA has agreed to a meeting, to discuss concerns over the ethics of the Ashley Treatment.
6 comments:
What will they decide? How will it impact other people with disabilities being used as science experiments? Share this around-- send it to your legislators, media and other bloggers of influence. The attention needs to be kept on the AMA to make them understand and carefully consider their words.. The disability community is watching and listening attentively...
Stay tuned!
AMA to Meet with Activists Mad about Growth-Stunting Case
By Lindsey Tanner
CHICAGO, IL - The American Medical Association bowed to pressure
from disabled activists and met Tuesday to hear their opposition
to growth-stunting treatment performed on a severely brain-damaged
girl.
The now 9-year-old girl identified only as "Ashley" had surgery in
Seattle to remove her womb and breast buds, and hormones to keep
her permanently child-sized - treatment some activists say
amounted to mutilation.
The treatment was first publicized in a medical journal owned by
the AMA, and her parents created a blog about their "pillow angel"
last month to defend their decision. Their daughter was diagnosed
with severe brain damage shortly after birth. She can't walk,
talk, sit or stand and functions like a young infant.
Her parents say the treatment makes Ashley more portable, more
comfortable, and will enable her to remain with her family and
receive care at home even as she ages.
Advocacy groups including Feminist Response in Disability
Activism, Not Dead Yet and Access Living asked the AMA to condemn
the treatment. They also sought support for proposed federal
legislation that would give families more resources to care for
disabled people at home so they could avoid drastic treatment or
being institutionalized.
After a protest outside the AMA building last month and repeated
phone calls and faxes demanding that the AMA listen to their
concerns, five activists from the grass-roots groups met Tuesday
with Dr. Michael Maves, AMA's chief executive officer, and Dr.
Cecil Wilson, chairman of the AMA's board of trustees.
While Maves and Wilson made no promises during the meeting at AMA
headquarters, the groups said just getting the nation's largest
group of doctors to hear their concerns was a victory.
"It was definitely a victory to at least have the dialogue that we
had," said Donna Harnett of the Feminist Response group, who
attended the meeting.
Harnett started a blog Monday to counter Ashley parents' blog. It
includes photographs of Harnett's disabled 11-year-old son,
Martin, whose medical problems are similar to Ashley's.
The Harnetts want "to show other families and inform the public
that there is an option available other than the 'Ashley
Treatment.' That option is to let a child grow into adulthood and
exist as the human being they are destined to become," the blog
says.
Maves called the tone of the hour-long meeting positive and said
the AMA would consider supporting legislation if it is introduced
in Congress. He said the AMA also agreed to consider more meetings
with the groups, and will give them a more formal response in
writing during the first week in March.
"We don't expect anything to happen overnight. We're in it for the
long haul," said Diane Coleman of Not Dead Yet, who also attended
the meeting.
Maves said the ethical issues involved in the Ashley case "are
difficult for everybody involved. All of our hearts go out to
Ashley, her family, the physicians involved."
Still, he said Tuesday's meeting will not result in any immediate
AMA policy revision. Policy-making decisions at AMA are made by
the group's house of delegates, which next meets at its annual
meeting in June.
The AMA's Council on Ethical and Judicial Affairs is preparing a
report for the June meeting that will address decision-making in
cases involving children. The report, started before Ashley's
treatment was publicized, may address issues relevant to her case,
Maves said.
Ashley's doctors wrote about her treatment in October's Archives
of Pediatrics & Adolescent Medicine. The journal's editor has said
that publishing the report does not signal support for the
treatment, and a journal editorial called the treatment ill-
advised.
In an e-mail to The Associated Press last week, Ashley's parents
said they'd received 1,600 supportive e-mails and 120 messages
from critics.
"Most of the supportive ones are thoughtful" and show that the
senders have read the family's blog. "Most of the critical ones
are clearly knee-jerk one or two sentence reactions" that appear
to be reactions to sensational media headlines, the parents said.
On the Net:
Ashley's parents' website: http://ashleytreatment.spaces.live.com
Journal: http://www.archpediatrics.com
Martin Harnett's blog: http://martintreatment.spaces.live.com
Hi Arlene--I'll need your email address to get you started into the schedule for the Disability Blog Carnival. Didn't see it listed anywhere here, so send it my way at turley2 AT earthlink DOT net and we can discuss the carnival further.
Donna Harnett? She lives with a man - who this Martin (they say) calls "Dad" who has never paid a dime of his own court-ordered obligations to meet his own children's medical and dental needs (and is at least $50,000 in arrears). He never covered his son with a health insurance policy (for almost 9 years) and his 16-year-old daughter is without any coverage from him, too. He has not held a full-time job in years, and leaves the great bulk of the financial responsibility for his children to his ex-wife (me). And you celebrate this woman (Donna Harnett) who helps this man (Jeff Dick) cheat his own children? Why would you do that?
The focus of this blog story is the Ashley Treatment, not the lifestyles, trials and tribulations of Donna.
What are your thoughts on the challenge to the AMA regarding validation of the Ashley Treatment?
To "Future Doc Wilson" - Sorry about that . . . but I just think that when anyone (man, woman, child, advocate, etc.) enters the public forum to speak on the parental decisions of others (as Donna Harnett and her 'significant other' have done, they should not be allowed to spew their views on how others "care" for children, while he (with her tacit and formal approval) does NOTHING to care for his own children, leaving (literally) tens of thousands of dollars of their bills unpaid. Those who lie and cheat their own children should have no standing (moral or otherwise) to comment on the challenges faced by other parents when they have abandoned their own children.
Right? It is not dissimilar to Jesse Jackson discussing what is morallly correct when he has a child out of wedlock (while married to his wife); or Rudy Guiliani discussing "Family values" after living with his mistress (and now 3rd wife) in the mayor's mansion in New York City while still married to wife #2.
It is our duty to call these people out . . . isn't it? Otherwise, why would anyone take what we say about the "Ashley Treatment" seriously?
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