Thursday, January 04, 2007

A nine year old forever

Drudge Report had a link to the fascinating story of a girl who is severely mentally retarded. What makes this nine year old girl fascinating is the fact doctors are performing medical procedures on her in order to basically keep her nine years old for the rest of her life.

From the Guardian article:
"Ashley's parents call her their Pillow Angel, a moniker that is a reference to the love and joy they feel for their nine-year-old daughter and the severe disabilities she has suffered from birth. She cannot sit up, walk or talk, is fed by tube, and, as her parents put it, "stays right where we place her - usually on a pillow".

Ashley won't know this, as she is brain-damaged and has the awareness, her doctors say, of a baby, but she has become the subject of a passionate argument in disability circles and beyond. Her name is becoming synonymous with the debate about the acceptable limits of medical intervention in the care of disabled people.

The cause of the controversy is the "Ashley Treatment" - a course of surgery and hormone supplements devised for her at her parents' request and with the blessing of doctors - that will for ever keep her small. It involves surgical operations, including a hysterectomy, and hormone prescriptions that will, in effect, freeze-frame her body at its current size.

Although she has a normal life expectancy, she will, physically, always be nine years old. Her growth has been suspended at 4ft 5in (1.3 metres), rather than the 5ft 6in she would probably otherwise have become. Her weight will stick at around 75lb (34kg) rather than 125lb.

...The parents insist that the treatment, carried out in 2004, was conceived for Ashley's benefit and not their own ease or convenience. With a lighter body and no breasts, Ashley will have fewer bed sores and lie more comfortably. And a smaller Ashley can be cared for and carried. "As a result we will continue to delight in holding her in our arms and Ashley will be moved and taken on trips more frequently instead of lying in her bed staring at TV or the ceiling all day long," they write.

But as news about the treatment became known, Ashley's parents were surprised by the virulence of some of the response. Comments on chatboards have included: "Ouch - this smacks of eugenics"; "I find this offensive, truly a milestone in our convenience society"; "This smells, I can't agree with this".

Outrage has also been expressed by organisations representing disabled people across the US, with many asking why a course of treatment that would not be countenanced for an able-bodied person should be allowed in this case. "People have been horrified by the discrepancy," said Mary Johnson, editor of Ragged Edge, an online magazine for disability activists.

(A complete description of the situation and the "Ashley Treatment" was posted by the parents here)

How can anyone have an issue with what is going on here? Am I the only one who can see these parents have this child's best interests at heart? I find it heartwarming that the medical community can perform these procedures to make a better life for a human being who will never know it.

As usual, there are busybodies out there who want to take this case and use it as a broad brush across society as a whole. Then they step back and say the individual case cannot be good because we don't like how it looks somewhere else. People spend so much time thinking in terms of forests that they forget the individual trees.

If we give in to the busybodies of the world, we will be nothing more than Ashley, a nine year old forever waiting for someone to take care of us. Rather, we should seek to emulate Ashley's parents, taking care of those who need us in the best ways possible, while still living our lives freely.

1 comment:

Madscribe said...

Ed, I'd have to agree with you. They said the girl is mentally disabled, so they are not interfering with the right of a cognitively able human being to make decisions for self.

It seems the humane thing to do, as puberty and reproductive maturation would only add unnecessary and cruel problems to a female that is unable to understand the body changes that would occur.