Inclusion Daily Express
Tuesday, March 27, 2007
  Should "Ashley X' Be At Center Of Community Living Debate?

By Dave Reynolds, Inclusion Daily Express
March 23, 2007

SPOKANE, WASHINGTON & ISTANBUL, TURKEY--As most of you know, I am a strong advocate for community living. I believe that
the only way people with disabilities have any chance of experiencing freedom and a decent quality of life is to live in their own homes, outside of institutions.

That's why I started Inclusion Daily Express in the first place.

Having said that, I've been a bit worried about our movement's use of 9-year-old "Ashley X" to further our cause.

During the first week of this year, an anonymous Seattle couple launched a website to promote the fact that they had doctors give their daughter massive doses of estrogen while surgeons removed her uterus and breast tissue -- to keep her from growing.

They said they did not want the girl, who has developmental disabilities, to go through the discomfort associated with puberty, and that they wanted to have her at home -- to carry and to cuddle -- for as long as possible.

Many US and UK disability rights advocates condemned the parents of "Ashley X", saying the procedure amounted to mutilation and violated her human rights.

I agree.

Some added that an increase in funding for community residential programs would keep other parents of children with disabilities from turning to the "Ashley Treatment".

This might indeed be true.

Frankly, however, I haven't been able to make that link between community supports and Ashley's parents. I don't think one has much to do with the other.

For one thing, I found nothing in statements by Ashley's parents to suggest that an increase in community supports would have kept them from surgically changing their daughter to fit what they wanted her to be, an eternal "Pillow Angel". To the contrary, they said that they had tried in-home services but were not happy with them. Not that their satisfaction with the services would have mattered; even if they had the best in-home supports for Ashley, they still would have chosen their radical procedure.

"We would never turn the care of Ashley over to strangers even if she had grown tall and heavy," they wrote.

For another thing, the parents have said over and over that they chose the 'attenuation treatment' because they did not want Ashley to go to an institution. So, as strange as this may sound, these parents consider themselves to be community advocates.

Yes, we do need to push, at every opportunity, for more and better in-home supports for people with disabilities of all ages.

But using this case to justify our position puts us on rather shaky ground.

One reason is that the same young girl can be -- and is being -- used to justify the opposite position.

On Friday, Turkey's Zaman newspaper reported that a Turkish family is considering the same treatment for a 13-year-old by who has cerebral palsy.

Füsun Evren said she was looking for a doctor to stunt the growth of her 42-pound son, Umut Mert, by having him castrated.

"I want him to stay as my little Mert," she said.

Sound familiar?

While one university professor pointed out that castration violates all religions, including Islam, the head of the Turkish Association for the
Disabled, Zülfikar Akar, said: "These situations happen because care centers don't offer long-term care for people with disabilities."

In other words, there needs to be more funding for institutions.

"Parents of disabled children support ‘Ashley’s treatment’" (Today's Zaman)

"Disability Advocates Respond To 'Ashley Treatment' Designed To Keep Girl Small" (Inclusion Daily Express Archives)

Dave Reynolds, Editor
Inclusion Daily Express / Inclusion Weekly Review
International Disability Rights News Service

Hey, Dave, I have worries of my own about this Ashley case. From my years fighting phoney brain rehab, I know many parents who keep their kids alive at home, and many of them in states which will not fund home services. Missouri for one. New York for another — if the parents aren't poor enough. One parent even called me to say she'd done something similar to the Ashley treatment to her own daughter so she could continue to care for her as they both grew older. I know other parents, both short, light people, who wrestle to care for their 6' 8" tall 220 pound son/stepson who has been fully paralyzed since he was 19. So I wish all the pc types would get off their high horse and think about this. I hate the idea of "pillow angels" but first and foremost I value our lives.
I appreciate your article, and the call to question about community supports having anything to do with Ashley's Alterations. I have thought from the begining that her parents do not want to be inconvenienced. Personal Care Attendants inside of your home and your lives is difficult, and inconvenient. The PCA's get to see how you live, all the time. When your house is dirty, laundry is piling up, and you are angry or sad.... the PCA's are there too. If you want a nice, neat, private life, without the inconvenience of PCA's, then you can take your family member with disabilities in for alterations so that you don't need a PCA. You can continue to lift your kid and flop them onto a pillow and call them an angel.

Ashley's parents are probably independently wealthy. They could probably have paid PCA's out of their own income without a problem.

This has more to do with the ethics question about physically alterating your kid to fit your life.
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