Friday, January 05, 2007

Ashley X

Numerous other bloggers have covered this story much more in depth, so I will defer to their better analysis in the links below. The gist of the issue is this:

Ashley X, age 9, has a mental impairment, static encephalopathy, which leaves her mental development stopped at approximately that of a 3 month old. From the "Ashley Treatment" website:

Now nine years old, Ashley cannot keep her head up, roll or change her sleeping position, hold a toy, or sit up by herself, let alone walk or talk. She is tube fed and depends on her caregivers in every way. We call her our “Pillow Angel” since she is so sweet and stays right where we place her—usually on a pillow.

Ashley is a beautiful girl whose body is developing normally with no external deformities; see photos. She is expected to live a full life and was expected to attain a normal adult height and weight. Ashley being in a stable condition is a blessing because many kids with similarly severe disabilities tend to deteriorate and not survive beyond five years of age.

Ashley is alert and aware of her environment; she startles easily. She constantly moves her arms and kicks her legs. Sometimes she seems to be watching TV intently. She loves music and often gets in celebration mode of vocalizing, kicking, and choreographing/conducting with her hands when she really likes a song (Andrea Boccelli is her favorite – we call him her boyfriend). She rarely makes eye-contact even when it is clear that she is aware of a person’s presence next to her. Ashley goes to school in a classroom for special needs children, which provides her with daily bus trips, activities customized for her, and a high level of attention by her teachers and therapists.

Ashley's parents have pursued a path of invasive medical procedures that will stop Ashley's development and keep at her current body size for the rest of her life. The procedures include a hysterectomy, removing the "buds" of her breasts, and hormonal treatments.

Overall, I find the parents' actions to be those of convenience for them, not what is best for Ashley. I can understand them wanting to make things simpler, but this is Ashley's life and body, not theirs.

Further (and better) analysis from a feminist and disability rights perspective:
The Gimp Parade: "Frozen girl" discussed on TV tonight
Did I Miss Something?: It begins with Ashley.
Wheelchair Dancer: Human Rights

11 comments:

Malky said...

You're right, we should leave this up to Ashley. Let's ask her what she wants.

Oh, that's right, she can't communicate. So who should the choice fall on now?

I cannot think of anyone more qualified to carry this burden than her parents and doctors.

les wilkinson said...

--------------------------------------------------------------------------------

The parents of this little girl are doing what is right for them, and for the girl.
What we have here are parents that gave birth to a handicapped girl so did they abandon her no did they put her up for adoption no.
They love her and every decision they make regarding her well being and future are done with love.
Its obvious they have been informed of this procedure by Medical experts so they alone are not responsible for this treatment.
We must remember this ,in reality its not a nine year old child but a 3 month old baby who will enjoy the stimulus and affection we give children of that age.
By keeping the child to a certain size this will enable the parents to continue to give the the kind of love and affection a child of three months would expect bringing both dignity and respect to both parents and child

When you consider we can terminate pregnancies if the baby is thought to be handicapped ,the parents of Ashley are without question ones to look up-to and to be supported in every way possible.

I for one admire them both, and send out my love and support to them and Ashley

Disgruntled Ladye said...

My biggest problem is the parents' insistence that this is NOT for their benefit, but for Ashley's benefit. It's a bit of "the lady doth protest too much".

There are no easy answers in this situation, but I think that less invasive procedures to keep Ashley safe and comfortable could have been undertaken.

Who knows, in 15 years, we may discover that Ashley was cognizant all along. How many people with severe Autism or other cognitive impairments were thought to not know what was going on 20-30 years ago? Medical science is advancing, and in the future we may find that this was a mistake.

The other major issue I have with this is the parents' pushing of the "Ashley Treatment" for other children in a simliar situation. We don't know enough about the long term effects of this treatment. Pushing it as a viable solution to other parents does not sit well with me.

Anonymous said...

Why don't the people who have nothing to do with this little girl mind their OWN business and let the parents(who are responsible for her)take care of her.

Disgruntled Ladye said...

Anonymous,

These parents left all semblance of privacy behind when they put up a BLOG about their daughter's treatment.

Sharon L said...

Parents are not allowed to do anything that they want to their children. Doctors are not allowed to do anything they want to their patients.

Why should Ashley's case be an exception?

Anonymous said...

I completely disagree with the parents being able to change Ashley to make life "easier". I am a mom to a disabled child and I would never change anything about him! Children are a gift and they shoud not be forced to conform to our needs! We as parents have to adapt to fit thiers no matter what this entails! As far as them giving the excuse of taking her breast tissue because Breast Cancer runs in thier family, Ovarian and Breast Cancer run rampant in mine should I go have my Ovaries and Breasts removed??? I wonder who gave them such an idea in the first place????

Disgruntled Ladye said...

"As far as them giving the excuse of taking her breast tissue because Breast Cancer runs in thier family, Ovarian and Breast Cancer run rampant in mine should I go have my Ovaries and Breasts removed??? I wonder who gave them such an idea in the first place???? "
You make a good point. I imagine that a doctor planted the seed of these changes. I just hope that someone steps in before this becomes an accepted practice for disabled children.

Anonymous said...

there are 8 billion people in the world. SHould the world change for each of them???? or should we all change, and all compromise in order to live together?

against the Ashley treatment said...

"there are 8 billion people in the world. SHould the world change for each of them???? or should we all change, and all compromise in order to live together??"

Sure, the world should change. I see a lot of selfishness and arrogance in the world, especially in this country and that is EXACTLY what "Ashley's" parents are acting like. YES THE WORLD SHOULD CHANGE FOR EACH OF US. Try thinking of others for once. It's not all about you!

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