Ashley Treatment - Action/Protest in Chicago

[Traveling_Home]

----- Original Message -----
From: Amber Smock
Sent: Thursday, January 11, 2007 5:06 PM
Subject: "Ashley Treatment Action" Report: What Really Happened


(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 Starbucks, 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.

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
FRIDA
Chicago ADAPT


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[elehhhhna]

1. How is this any of their business?

[jkshaw]

2. There could be ramifications

resulting from this one procedure on this severely handicapped child that I know nothing about but, that said, I can only agree with your question, How is this any of their business? Will these protesters help to care for the child when she reaches adult size? Each of the protesters, that is? And the protesters' supporters? The procedure seems, from what I have learned so far from reports, to be a humane effort to help the child's family. I can't imagine facing the future they are facing in caring for her, even with these efforts in place.

[DemBones DemBones]

8. It's about mistreatment of the disabled.

It seems that DU has a large number of people who do not understand disability issues.

I wish that people who are not disabled and don't understand disability issues would stop posting in the DISABILITY forum that disability activists are "wrong" in what they say. It's like white people posting in the African-American forum that black activists are "wrong" in what they say.

If you're not black, you can't really understand racial issues from a black perspective but DUers try to be respectful of the black perspective and to learn what blacks think. White DUers don't generally go around telling blacks what they should and shouldn't think.

Why, then, do the abled feel they can tell the disabled what they should and shouldn't think?

If you're not disabled, you need to educate yourself by reading disability activist sites, or at least reading carefully what is posted here, and asking questions if you don't get it. You need to be respectful of the disability perspective and learn what disability activists think.

Unless you're black now, you never will be. But you could become disabled tomorrow. Or next month, or X number of years from now. Or someone you love could become disabled.

When that happens, you'll probably be glad that disability activists have been working for the rights of the disabled. You may well want disability activists to help you.

[Burnsey_Koenig]

3. Why is medical treatment a problem

in this situation? From everything I have read about this case, the young lady will never proceed past a three month olds mental capacity, and her growing in size presents issues involving future medical concerns.

We give children human growth hormones if we consider them "small for their age", ridilan if they are too active, and anti-depressants that actually make them suicidal, so what is the difference in this case where the parents want to take care of their child and have made a way forward in which to do so? Why shouldn't those in charge of her care be in fact IN CHARGE OF HER CARE?

I understand the ramifications of using any type of medical alterations in dealing with disabilities, but when the child has been shown to never be able to mentally mature past three months old, why is the altering of her physical form any issue for anyone else? From what I read in articles about this it will be of more benefit, in the longer run, than what protestors are saying. The removal of the breast buds, and the control of her size will enable the parents to care for her as long as they live, and will prevent serious health concerns in the future, such as massive bed sores when she gets to be larger in size.

The parents are trying to make the best arrangements to care for their child and not have to place her in a "care" facility at the discretion of those who have not loved or cared for their child.

Isn't this the same moral issue as Terri Shiavo? Where one side believes they know better than those who are actually doing the care, and the advice of the childs medical representatives? Are we now to try to get congress to pass an "Ashley's Law" which takes medical decisions out of the hands of those who are responsibly caring for their own child, akin to the Shiavo Law?

[shance]

4. Does something look manufactured and/or fake here?

Is it just me?

[Traveling_Home]

5. Larry King Tonight

More on the Ashley X Case on Tonight's Larry King Live Show

On Friday, January 12 at 6:00 p.m., Beverly Bertaina, Chair of
the Board of the Disability Rights Education & Defense Fund (and
the parent of a son with a disability), will appear on the Larry
King Live Show on CNN to discuss the case of Ashley X, a nine
year old girl with intellectual and physical disabilities.

When she was six, Ashley's parents requested that their daughter
be treated with medications (large doses of estrogen) to halt
her physical growth, and with surgeries to remove her breasts
and uterus. They believe that altering her body will make her
more comfortable and allow them to better care for her as she
becomes an adult. These interventions were undertaken at the
Children's Hospital of the University of Washington, School of
Medicine in Seattle, after consultations with the medical
center's ethics committee.

For more information about the Ashley Treatment story, check out:
http://dredf.org/news/in_news.shtml

[Traveling_Home]

6. Why not just ........

Now the chemical and surgical mutilation of this child leads to obvious other questions.

Why not just cut her legs off? She will never use them and they increase her weight which was the reason for checmically stunting her growth.

Why not just also take cut off her arms? They took off her breasts didn't they because of 'her' future discomfort from straps. Having her keep her ams just means she'll flail with them, people will have to cut her finger nails cause she'll scrtach herself (or them!!!!) She will be much more comfortable not having arms them having them get in the way all the time.

And the real solution - since she is always a child -

She will never be considered an adult human being with a severe developmental disability.

Since she'll always be 'thoughtless' - well - there's the solution - off with her head. Now - we've solved 'her' problem.

Why isn't it just ok for the parents to kill her. That would make it all better for everyone - right!

IF mutilation by parents for the good of their child is ok why not euthenasia (based on YEARS of hearing 'systems' professionals - teachers, social workers, doctors - present mutilation as a viable option to keep from demanding that the disability services system do its job).

This does nothing to help the parents provide for her in the future. It simply gets the social service system off the hook to provide the services that Ashley requires, deserves, and is already eligble for.

It's the SYSTEM - You IDIOTS - giving the parents no choices, few alternatives and a static view of future gains in technology and service delivery.

But then many of us know that it's not the purpose of professionals to seek a better life for disabled persons by providing services, skills, and options.

Not by any means - we disabled persons exist to provide jobs for Special Educators, Social Workers, Doctors, etc.

It's ass backwards and it is never ok to mutilate a child whether a disabled child like Ashley or a young girl facing clitoral mutilaton. IT IS NOT OK. EVER!

A society is known by how it treats it's most vulnerable and defenseless.

[DemBones DemBones]

7. You're the first person who's said what I have,

about cutting off those heavy arms and legs. She'd fit on a pillow much better then.

But the head is still a problem if you want to use a square pillow so off with her head!

People do NOT get it why this is a disability rights issue.