DREDF on the "Ashley Treatment" - Modify the System not the Person

[Traveling_Home]

DREDF Responds to "Ashley Treatment"
- Modify the System not the Person

"Benevolence" and "good intentions" have often had disastrous
consequences for the disability community. Throughout history,
"for their own good" has motivated and justified discrimination
against us. The recent story about nine-year old Ashley, a child
with severe disabilities, exemplifies this problem. 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.
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.
An article about the case appeared in the October 2006 issue
of Archives of Pediatrics and Adolescent Medicine (160:1077-1078)
and MSNBC first reported the story on November 1, 2006. Ashley
is now nine years old, with an expected final height of 4'5" and
a weight of 75 pounds. The physicians involved with Ashley's care
have expressed the opinion that she will never achieve a cognitive
level greater than that of a three-month old. Ashley's parents,
who call her their "Pillow Angel" (see their blog at
http://ashleytreatment.spaces.live.com/blog/), argue that
they can care for her more easily if she remains permanently
small, and that she as well as they will benefit from these
medical interventions. The case was reported by the Los Angeles
Times, the Associated Press, CNN, and many other media outlets on
January 4, and it has since raised a firestorm of debate.

We deeply empathize with parents who face difficult issues raising
children with significant physical and intellectual disabilities.
However, we hold as non-negotiable the principle that personal and
physical autonomy of all people with disabilities be regarded as
sacrosanct. For decades, parents, families, and the disability
community have been fighting for this principle, and for
community-based services for children and adults that make it
a reality. Their advocacy led to enactment of state and federal
laws in the 1970s that establish extensive rights to full
personhood for children and adults with disabilities. These laws
were passed to remedy our shameful history of abuse and
mistreatment of people just like Ashley.

As parents and adults with disabilities, our experience
demonstrates unequivocally that all people with disabilities can
be an integral part of home and community, if needed help and
support is available. It is not always easy to find home care
workers who are competent and empathetic. Too often, we must fight
to persuade social service and healthcare bureaucracies that help
at home and appropriate equipment such as adapted wheelchairs and
mechanical lifts are essential and fundamental to our autonomy.
However, if these problems seem insurmountable, or cannot as a
practical matter be surmounted, as Ashley's parents suggest, then
it is all our duty to change the system so it works rather than
find novel ways to modify people so that they will more easily
"fit" a flawed system.

Where, we wonder, was the network of programs and services that
exist in every state when Ashley's family decided the best option
was to employ medical procedures that violated their daughter's
autonomy and personhood? Were other families whose children have
disabilities like Ashley's asked to talk about their experiences
and how they solved problems as their children grew to adulthood?
Where were the social workers and advocates who should be
providing alternative perspectives? Why did the system fail this
family and their daughter? That, it seems to us, is a fundamental
question.

Beyond these apparent institutional failures, the conduct of
Ashley's physicians and the ethics committee's decision in this
tragic story should be widely questioned - there are future
implications for other families and their children who have
significant impairments. We rely on healthcare professionals to
alleviate pain and suffering and maintain functionality, not
decide when someone is worthy of holding human rights. After
decades of struggle to enshrine the human rights of people with
disabilities in law and policy and to challenge the overwhelming
prejudice, negative attitudes, and misperceptions that are widely
held about people with intellectual disabilities, this sad and
puzzling episode must not mark a turning point for those hard-won
gains.

It is ironic in light of this story that the United Nations
General Assembly recently adopted the first convention of the
twenty-first century - the Convention on the Protection and
Promotion of the Rights and Dignity of Persons with Disabilities.
Recognizing that the rights of people with disabilities to
autonomy and personhood are still violated by many nations around
the world, Article 17 of the Convention, entitled "Protecting the
integrity of the person," reads, "Every person with disabilities
has a right to respect for his or her physical and mental
integrity on an equal basis with others." In our view, Ashley has
been denied her basic human rights through draconian interventions
to her person.

Source: Disability Rights Education and Defense Fund
http://www.dredf.org
________________________________________________________________

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[Shipwack]

1. Thank you for framing this debate this way...

It finally convinced me of the right decision. Actually, I knew this was wrong, but couldn't quite articulate why. This does show how flawed our health care system is, that we would mutilate a person instead of working to get her parents proper care for her.

For the cost of all these operations and and drugs, couldn't they get a live in nurses aid? And why remove her breasts? Did they let her keep her clitoris, or was that removed so that the parents wouldn't be made to feel uncomfortable if she touched herself "down there"?

What's next? Amputating a blind person's legs so they don't stumble and hurt themselves? Removing a left handers dominant arm so their parents don't have to spend extra dollars on lefty base ball gloves or can openers?

[Traveling_Home]

2. You nailed it - Well Done!!! n/t

[NMMNG]

3. I love how they keep trying to make it seem

like it's all for her benefit. Giving her a hysterectomy prevents cramps (no mention of the convenience to the parents who won't have to deal with the messy menstrual periods). Taking her breasts off is good for her to prevent the risk of breast cancer and sexual abuse. Then they yank her appendix while they're in there "just in case". Gee, why don't we all get our breasts and appendixes removed then and end such risks? :sarcasm: Hell, why don't they just euthanize her to prevent any chance of suffering. (Mega :sarcasm:)

And all of that constant talk of "Pillow Angels", as if Ashley's a thing rather than a person. :puke:

[Traveling_Home]

4. Well said and ....

Even more so don't all of us agree that it would be better to provide the support services to her and her parents so that it is unnecessary to mutilate her in order for the parents see that she gets the support services she needs.

Independent Living = Anyone can live independently in the community if the neccessary support services are provided.

Supported Employments = Anyone can work in the community in appropriate support services are provided.

IF I'M RICH AND I HAVE SOMEONE DO MY COOKING I'M ENVIED

IF I'M DISABLED AND I HAVE SOMEONE DO MY COOKING I AM AN OBJECT OF PITY

Support ADAPT (ADAPT.ORG) - Free Our People

[NMMNG]

5. Indeed

I've seen this sort of thing before. The parents want to keep their disabled child a precious "little baby" forever so they take whatever steps they can to keep them childlike. One woman I know refused to let us toilet train her son because then he wouldn't be "her little baby" any more. She also didn't want us to teach him to stop sucking on his fingers, carrying throw pillows around and drooling on them and leaning over the furniture and drooling on it because she thought that was soooo cute. Try smelly, inappropriate and unhygenic. x( Countless others refuse to see their adult offspring as sexual beings because "they have the minds of children". :eyes:

These parents don't see Ashley as a human being, they see her as a little "pillow angel" to be sat upon a pillow as an ornament for their enjoyment. Everything they're doing is for their own convenience, not her benefit.

[DemBones DemBones]

6. I've said elsewhere that if the parents were

so worried about her getting too difficult to move around, why not amputate her arms and legs?

That would eliminate a lot of weight and make her fit on a pillow better, be a neater ornament.

(Of course, to really fit on a pillow, the head ought to go, too, but the parents might balk at that drastic step.)

It really disturbs me that doctors went along with infantilizing this child to please the parents. Whatever happened to "First, do no harm"? It seemed obvious to me, as to you, Buffy, that the parents don't want to see her as an adult and particularly as a sexual being. It's not only the parents of the disabled who are uncomfortable with their children developing secondary sexual characteristics, or (horrors!) having sex, of course. Nobody ever said parenthood was easy.

I realize that some perverted people will take advantage of those unable to give consent and that Ashley's parents want to protect her from that. No sane parent wants their child(ren) to be raped. But infants and toddlers are raped, as are very old women, or women in comas, or anally rape men or women. Rape isn't about sex in the normal sense at all. Sexual development and attractiveness are often irrelevant to rapists.

I can see the wisdom of sterilizing people who are unable to give consent to sex but a hysterectomy is an extreme move. Just the other day I read a quote from the parents that they thought caregivers would be upset by menstrual blood when changing Ashley's diapers. I was stunned anew by this case.

I hardly think you can be a caregiver for disabled adults, or a nurse or doctor, if menstrual blood on a woman's diaper is going to give you the vapors. I think the parents didn't want to see Ashley's menstrual blood, or her breasts, because they can't accept that she's becoming a woman. Even without ovaries, her body will produce some estrogen so they may have to deal with some things they'd rather not. I feel sorry for them that they're so hung up about Ashley's sexuality, but I feel a lot sorrier for Ashley, condemned to be a Beanie Baby.

[NMMNG]

7. Indeed

I've said elsewhere that if the parents were so worried about her getting too difficult to move around, why not amputate her arms and legs?

Why not? It's not like she's going to use them for anything functional anyway. :sarcasm:



I realize that some perverted people will take advantage of those unable to give consent and that Ashley's parents want to protect her from that.

The strange thing is that they claim that they are doing all of this so they can continue to care for her themselves, then state that they're removing her breasts so she won't be sexualized to her caregivers. Are they afraid that they are going to be tempted to abuse her?


Just the other day I read a quote from the parents that they thought caregivers would be upset by menstrual blood when changing Ashley's diapers.


So, as I said before, it's not about making life easier on Ashley. It's about making it more convenient and pleasant for her parents/caregivers. I would think feces in her diaper would be more traumatizing than some blood but I don't see them making plans to stop feeding her solid food....yet.


It is so outrageous that this could be going on in this day and age.

[Donald Ian Rankin]

8. I don't think those claims are true.

There's no way that someone who's permanently going to have a mental age of three months will ever be able to live independently or work.