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.
