Not Dead Yet Reacts to Ashley Treatmment

[Traveling_Home]

Not Dead Yet Statement on Growth Attenuation Experimentation

January 6, 2007

Contacts: Diane Coleman or Stephen Drake
708-209-1500, exts. 11 and 29
708-420-0539 (cell)

Not Dead Yet, a national disability rights group dealing with
medical and bioethics issues involving euthanasia, reacted today
to the public debate about the so-called growth attenuation
invasive medical experimentation performed on a young girl in
Washington State. These procedures rendered her sterile, prevented
any sort of puberty and will keep the girl the size she is now for
the rest of her life.

We are saddened but not surprised by the fact that this was
publicized and met with a great deal of public approval, said
Diane Coleman, founder of Not Dead Yet. The public is willing to
sanction the murders of disabled children by their parents, so
its hardly surprising they would rush to the support of parents
and their medical partners in a matter like this.

Coleman points out that the series of surgeries and drug regimens
would never have been given to a non-disabled female for any
reason.

But more of these practices are threatened. When a report of the
Washington case was published in the Archives of Pediatric and
Adolescent Medicine, some so-called critics of the procedures said
the only way we can evaluate the outcome is to do more
research, which we presume to mean more experimentation on young
women. Thats unacceptable, said Coleman. We simply need to
call a halt to it.

Stephen Drake, research analyst for Not Dead Yet, is not surprised
to hear there were medical professionals willing to perform such
drastic measures on a young girl.

As a child, I had many health problems that continued until the
age of 12, said Drake. By the time I was 11 or 12 I was feeling
good enough to worry about other things, like my height (Drake is
5 1). I was tired of always being the shortest guy in my class
and feeling bad around it. My parents took me to a specialist who
determined that my health issues probably had depressed my growth
and mentioned the possibility of growth hormone. My parents vetoed
the idea, since I was finally happy and healthy. They figured I
didnt need any new unknown health risks introduced into my life.
They were right and it didnt really take me long to see it their
way.

Not Dead Yet calls for a total ban on this procedure and similar
ones, no matter what ethics committees think of them. Ethics
committees are not a substitute for the constitutionally-
guaranteed right of due process. In fact, they often act as an
end-run around those protections. Ethics Committees often say
they strive for diversity in their membership, but they have
historically excluded representation from the disability community
about whom they are making life and death decisions, said
Coleman.

Source: Not Dead Yet
7521 Madison St.
Forest Park, IL 60130
708-209-1500
http://www.notdeadyet.org
________________________________________________________________

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[lisby]

1. The girl will have the mental capacity of a three-month-old her whole life.

Her parents are her caregivers and always will be, because they have no choice.

The doctor carefully considered how this would impact her quality of life. Since she will be a perpetual baby (and by the way, she started abnormally sexually maturing at age six), will never go to school, marry, have kids, speak, stand up, or anything outside the range of motion and life for a three-month-old, keeping her artificially smaller will allow the parents to more easily care for her, as well as give her what all three-month-old babies need: cuddling and holding.

I suggest someone do some reading on this case to see how the decision was made and why.

http://www.npr.org/templates/story/story.php?storyId=6730813

lisby

[NMMNG]

2. The parents may want to care for her her entire life

But it's not entirely possible they'll be able to. Ashley may outlive them, and even if she doesn't there may come a time that her parents are too old and/or infirm to care for her any longer. At that time she'll need to go into some form of residential care (unless one of her siblings or another family member wishes to provide care for her).

If she goes into residential care her childlike size could prove a disadvantage to her because she'll likely be placed with others who are of the same chronological age. These people will normal adult size (or close to it) and Ashley will be tiny compared to them.


And just because the doctors say she has the cognitive level of a three-month-old doesn't mean that she is going to be a "perpetual baby". I have worked with adults who have developmental disabilities for more than 19 years now. I know people who, according to tests, have roughly the cognitive levels of 9 month old babies and walk, undress themselves, dress themselves with minor assistance, open and close doors (sometimes even unlock them), feed themselves and complete other tasks no 9 month old baby is capable of. One of the biggest barriers these individuals face is low expectations.

[DemBones DemBones]

3. You are so right about low expectations.

I've seen it so many times with kids who've been labeled as retarded or learning disabled or just slow. It helps, of course, to know what a person's disabilities are so you know how best to help them.

But most people can do more than their IQ would indicate. If you, as a teacher or caregiver or parent, let them know that you're confident they can do better, chances are that they will do better.

Your experiences with people who, according to tests, have the cognitive level of 9 month-olds are amazing even to me, though. Kudos to you; it takes a special person to work with the severely disabled and I know the burn-out rate is high so 19 years is quite impressive!

[NMMNG]

4. I've seen so many instances

in which people have come to us out of institutions or even family homes with few skills then learned in leaps and bounds. All it takes is patience and determination on the part of staff. The individuals normally have the willingness, though occasionally they need to be encouraged to get over some reluctance since they may actually have been discouraged from doing things for themselves previously. Learned helplessness is all too common.