Mutilation of daughter as disability treatment

[PDnemesis]

ACTION ALERT

Fax/E-mail/Phone Campaign

Feminist 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
E-mail: Douglas.diekema@seattlechildrens.org


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


Melinda Gates
PO Box 23350
Seattle, WA 98102
Phone: (206) 709-3100
Fax: (206) 709-3252
Email: info@gatesfoundation.org

Susan Macek
Director of Communications, Seattle Children’s Hospital
Phone: (206) 987-5201
Pager: (206) 469-6310
E-mail: susan.macek@seattlechildrens.org


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:

http://ashleytreatment.spaces.live.com/

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

http://news.bbc.co.uk/go/pr/fr/-/2/h...as/6229799.stm

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.

This is the email I sent:

I am horrified by the Ashley Treatment.

As the single parent of a young adult who is moderately disabled by both Down syndrome and prenatal exposure from his birth mother to drugs and alcohol, I can say with all honesty that there have been times when ideas have crossed my mind that have made me wonder what means not completely dissimilar to the Ashley Treatment would make it easier to take care of my child. Those ideas have entered my mind when I have faced roadblocks, confusion, and dispair. So do not think I have not been where these parents are - I have been.

Thankfully, these moments of dispair have challenged me to work harder to provide my son with access to everything he needs to be the best person he can be. It has compelled me to work harder for access to services our family needs to remain the family we want to be. It has demanded that I become a disability activist struggling to help people understand his rights as person to be fully integrated into life however he chooses to be.

Yes, this has forced me to make difficult decisions that have not always been easy. No decision I have ever made would compromise the person my son is or take away any of his personhood. I cannot imagine authorizing a treatment plan that would force him to fundamentally change from the person he is or will become.

Ashley is not a medical experiment. She is a little girl who has every right to grow up to become a young woman and an adult. If this makes it harder for her parents to raise her - then the solution is to work harder toward finding means to get the help and support they as parents need to raise Ashley.

These parents have harnessed an amazing amount of energy to get their child what they think she needs, I cannot for one second believe they could not have used that energy to get the services and care she needed without resorting to this horrid mutilation of her body.

Elie Wiesel said “in extreme situations when human lives and dignity are at stake, neutrality is a sin." It has not gone unnoticed who has given the parents the tools they needed to commit atrocities upon their daughter.

Most sincerely,

[Rbrauer]

I think it is up to the parents and everyone else should stay out.

[LaMemChose]

I don't see this as an issue over which I'll spend my time writing letters and making phone calls.

Ashley is cognitively three months old. The parents say they made the choice for the surgery and medication because they don't want her possibly abused later in life.

Whatever your situation with your son, Susan, that's your business.

I'm sure these parents made a difficult decision in an even more difficult situation. I'll not judge them for it.

[Karla523]

I would never judge the parents for their decision. Ashley is cognitively unaware. They are not even sure she recognized her own parents. Is your son that severely impaired mentally? You stated that "She is a little girl who has every right to grow up to become a young woman and an adult". She will never be a young woman or an adult... she is mentally an infant and will always remain so. I am sorry that your son is moderately disabled, but I believe this family is in a far different situation and it is unfair to judge their motives.

[PDnemesis]

Parents do not own their children.

When a parent beats their child as a punishment fort their own good - do we stay out of it then too? They believe it is the best thing for their kids too.

[PDnemesis]

How do you or anyone know Ashley is cognitively unaware? She is unable to communicate - that is a very BIG difference. Have you looked at her photos? - she speaks with her eyes that she is happy. She obviously laughs and smiles. If she was as cognitvely unaware as they say she wouldn't enjoy visits to the zoo and being included in family functions.

My son speaks is sentences that resemble a 3 year old and so people think he understands his world as a 3 year old does - but if you listen you know he understand the world like the 23 year he is.

There are people with graduate degrees who cannot speak - but they have had the benefit of facilitative communication - someday that could be key to Ashley's ability to communicate too.

[Obieone]

Originally Posted by LaMemChose

I don't see this as an issue over which I'll spend my time writing letters and making phone calls.

Ashley is cognitively three months old. The parents say they made the choice for the surgery and medication because they don't want her possibly abused later in life.

Whatever your situation with your son, Susan, that's your business.

I'm sure these parents made a difficult decision in an even more difficult situation. I'll not judge them for it.

Exactly ....... if there is any judging to be done ..... its certainly not up to us ..... as a parent I can only imagine how gut wrenching it was for these folks getting to the place where these decisons had to be made and then living with those decisons! My heart breaks for them and I wish them peace ! There is no question after having read their blog and viewing the pics this is a child who is well loved!
I can not support your position!

Obieone

[betheny]

I can't judge them. I think they probably have a pretty good idea how much their daughter processes mentally.

Stunting her growth is their solution to her growing too large for them to care for her, correct? They aren't stunting her so she'll stay cute, or funny, or childlike. Just so they can care for her.

It's a horrible thing for them to have to do. There are other solutions, like institutionalizing her...I actually have to applaud their taking a hard choice in attempt to ensure their daughter's care and safety. Also, they are removing secondary sexual characteristics, not lobotomizing her. The future speculative potential facilitative communication PDNemesis mentions need not be beyond her scope due to this surgery or hormone treatment (in my uneducated opinion).

I don't know much about it but on the surface they seem like loving parents.

ETA: Is it just me or is the targeting of Melinda Gates quite random and possibly a big intentional media play?

[LaMemChose]

If they wanted to be rid of their daughter they could. If they wanted to place her in an institution, they could.

They don't want to. They love her, want to care for her themselves.

By having the surgery, she'll not become pregnant from rape. She won't have breasts or periods. She won't get too large for her parants to lift on their own.

This decision had to be gut-wrenching. These parents made a hellish decision so they could keep Ashley at home.

Leave the parents alone, Susan. Raise your child as you wish. Don't tell them how to raise their very significantly disabled daughter.

The doctors are probably very accurate about her cognitive abilities. She's never going to thrill to the joys of womanhood with the mind of a three month old. A woman's body will not benefit her as she ages chronologically.

As for saying they should not do this for their daughter, do you also think people shouldn't have surgery to improve other situations or conditions? We should just be as we are, not try to have better lives through medicine and surgery?

If I break a leg, should I just accept it, embrace it, learn to live with it and love it? Or should I get help for my leg, including casts and surgery if necessary?

You're trying to apply your views of about disability rights to people you don't know just to make a point.

If they had a child who was going to be very short, would growth meds be wrong? Possibly to you, but to a child who has the opportunity to be more like others, it would't be abusive.

Seattle Children's is not handing out growth stunting meds and reproductive organ removing surgeries like candy on Halloween.

I'm not calling to complain about this, not writing letters.

[rfbdorf]

I agree with the several posters above. It was an extremely difficult decision to have to make. I have no doubt it caused them a lot of agony. I also have no doubt that the best interest of the child is foremost in their minds. I could not support any harassment of the parents or their doctors for their actions.
- Richard