Grandma\’s Tales

January 9, 2007

Better dead than disabled?

Filed under: My Other Avtaar,Society — Rajesh @ 10:31 pm

CNN-IBN took up this controversial story from Seattle for panel discussion today. On the panel were Javed Abidi, a wheelchair user and a disability activist and three parents of disabled kids. Also discussed with a clipping was the recent story in which a fairly well-to-do mom of two mentally disabled boys had chosen death for the kids and herself. The Seattle story came from Michael Rowland.

Parents defend decision to stunt daughter’s growth

“The parents of a severely disabled nine-year-old girl in the United States are defending their decision to deliberately stunt her growth.

Ashley was born with a rare brain condition. She cannot walk or talk and she cannot even lift her head in bed. Three years ago Ashley began to show early signs of puberty and her parents decided to stop her growing, so, as they put it, the girl could have a better quality of life. Ashley was given hormone treatment and had her uterus and breast buds removed. As a result Ashley’s growth has been suspended at just below one-and-a-half metres. She’ll weigh no more than 34 kilograms. Her parents haven’t given their names, but they’ve set up a blog to defend what they’ve done, alongside a gallery of photographs of Ashley.

Critics have accused the parents of maiming their child for convenience, but Douglas Diekema – one of the Seattle doctors who approved the treatment – says this was not the motivation. “If she were smaller, it would be much easier for them to continue to provide a much more personal level of care,” he said. The parents insist they stunted their daughter’s growth out of love. They call her their pillow angel.

At the present time, dad is frequently the one that lifts her from one place to the other. As she gets bigger that would become much more difficult. They would be forced to consider using a mechanical lift, which is impersonal. Also, Ashley will have more exposure to social gatherings, instead of lying down in her bed staring at TV all day. And they’ve told their critics that “unless they’re living the experience, they have no clue what it’s like to be the person or the caregiver.”

In the United States, controversy is raging over the decision. The move has triggered intense and emotional debate, with critics accusing the parents of maiming their child for the sake of convenience. Andy Imparato, CE of the American Association of People with Disabilities said, “To remove a child’s uterus on the grounds that she doesn’t have the mental capacity to know how to use it is child abuse.”

Ashley’s doctors, Daniel Gunther and Douglas Diekema, wrote that the treatment would “remove one of the major obstacles to family care and might extend the time that parents with the ability, resources and inclination to care for their child at home might be able to do so.”

Javed was furious. He said he was disgusted that this should happen in a country where advanced facilities for the care of disabled people exist, where research is ongoing and the government prides on a pro-active policy of inclusion.

The other panellists were angry too. The mom of a boy with autism said, “I can’t really comment on this because I’m not the mother of a girl child. Disabled girls of course have problems far worse than those of boys. Will I do this to my son? Never!”

She agreed all parents of disabled kids have this question foremost in their mind. What happens to him/her after me? She said, “Instead of looking for cures and quick fixes, why don’t we create a society where children who are diferent are accepted as part of the diversity and are given the accommodation they need? Don’t they have a right to be what they are?”

Amen to that, however Utopian that may sound.

Advertisements

5 Comments »

  1. All I can say is that some people should not be parents. A disgusting thing to do, pre-supposes that there will be no advances in medicine in the future that could help. It was not done with the child in mind, but to make the parents life easier. Shame on you!

    Comment by Eric — March 3, 2007 @ 3:53 pm | Reply

  2. Totally agree with you, Eric and thanks for stopping by. But the reality is different. A lot of the parents of disabled children we meet just aren’t prepared to accept them as children first. Do you think there ought to be pre-natal counselling on this?

    Comment by Geeta Padmanabhan — March 3, 2007 @ 4:50 pm | Reply

  3. I think that Ashley’s parents made the decision to stunt her growth out of love.The decision is benifiting to both Ashley and her parents after all she is is permantly disabled,can not care for herself in any way, and she has a mind of a three month old.While i agree the decision is benifitting i also agree that it is morally wrong in every way possible.she has not been given the chance yo grow up but physically.Instead of trying to put myself in her parents shoes i ask myself what if i was Ashley… and i would want to have the surgery because i would want to be cared for easily end to feel as comfortable as possible.

    Comment by JACOA — March 19, 2007 @ 5:35 pm | Reply

  4. Hi!
    I’m not very sure any of us (read-normal) are really in a position to comment on this. There’s someone very close to me who is underdeveloped-mentally, if not physically and it really is painful to see him go through the difficulties of everyday life. There’s a ridicule at every step, a feeling of utter helplessness always. Rarely do we find people willing to slow down and accept others just the way they are, willing to slow down for them.
    Probably, that’s what Ashley’s parents felt. I’m sure as parents they did all they could to avoid the situation.
    It is Utopia where people like Ashley can grow up and be accepted.

    Comment by Poulami — March 22, 2007 @ 11:27 am | Reply

  5. Hi JACOA, thanks for stopping by. I guess “If I were Ashley” is the whole point here. If I were Ashley and if I took the decision to stay stunted, who is anyone to question that decision? Ashley is NOT taking that decision which profoundly affects her life. That is the issue. I also believe in miracles. The changes are permanent, and what if a cure is found for Ashley in the future? Isnt her condition irreversible?

    Hi Poulami, thanks for stopping by. As someone who is constantly in touch with people with disabilities, I can see your point very well. True, the society as we see it today is not a compassionate one. It allows no time or empathy for people who are slow. We see this attitude at traffic signals every day.
    We are chasing that Utopia at Ability Foundation, Poulami. We engage in a number of innovative, interesting and attractive activities to bring about this mindset change.Check out http://www.abilityfoundation.org. Just because we live in an unkind society, we cannot arrogate to ourselves the right to engineer someones body, can we? While I completely sympathise with the thinking of Ashleys parents, and yours about your neighbour, I would, as JACOA points out, find it morally wrong to stunt anyones growth. All I can do is to ask for people to grow up to accept disability as part of lifes diversity and governments to build a support system for disabled people to function to the best of their ability.[Sorry about the apostrophes. The computer isnt accepting them today.]

    Comment by Geeta Padmanabhan — March 22, 2007 @ 9:45 pm | Reply


RSS feed for comments on this post. TrackBack URI

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Blog at WordPress.com.

%d bloggers like this: