Disability news, Accessibility Issues, Disability Issues, Accessiblity News

Archive for the ‘public policy’ Category

Following up on the ‘pillow angel’ saga

Sunday, June 17th, 2007

The Seattle Post-Intelligencer carries an insightful column by Anne McDonald about Ashley, the 6-year-old girl whose uterus and breast buds were removed at the request of her parents. The parents had argued that it would would be easier to care for their daughter, who has mental and physical disabilities, if she did not grow to an adult size, and that a childlike body would afford her “more dignity and integrity than a fully grown female body.” In their blog, the parents (who have not revealed their identities publicly) refer to their daughter as “Pillow Angel.”

Last month, in the face of an investigation and mounting controversy by disability rights advocates, Children’s Hospital in Seattle admitted that the hysterectomy was illegal.

McDonald’s column explores her own experiences as a child whose growth was attenuated and whose potential was overlooked by medical professionals. She questions the assessments of Ashley’s abilities, and criticizes the decision to subject the girl to surgery without an effort to obtain her participation and consent for the procedure.Her words:

“My ongoing concern is the readiness with which Ashley’s parents, doctors and most commentators assumed they could make an accurate estimation of the understanding of a child without speech who has severely restricted movement. Any assessment of intelligence that relies on speech and motor skills cannot conceivably be accurate because the child doesn’t have any of the skills required to undertake testing. To equate intelligence with motor skills is as absurd as equating it with height.

“The only possible way to find out how much a child who cannot talk actually understands is to develop an alternative means of communication for that child. An entire new discipline of non-speech communication has developed since I was born in 1961, and there are now literally hundreds of non-speech communication strategies available. Once communication is established, education and assessment can follow, in the usual way.

“No child should be presumed to be profoundly retarded because she can’t talk. All children who can’t talk should be given access to communication therapy before any judgments are made about their intelligence.

“Ashley’s condemned to be a Peter Pan and never grow, but it’s not too late for her to learn to communicate. It’s profoundly unethical to leave her on that pillow without making every effort to give her a voice of her own.”

Secret pacts a problem for special ed

Thursday, June 14th, 2007

Okay, it’s a small school district, but we’re deluding ourselves if we think these practices aren’t widespread.

I’m talking about confidentiality agreements. The Santa Monica, California, School District has been requiring that parents of children with disabilities promise to sign confidentiality agreements (translation: stay silent) in return for getting the educational services they feel their children deserve. Parents have criticized the policy as an effort to intimidate them into silence and put a lid on political organizing. District officials say they’re just keeping costs down.

The controversy had been simmering for a while, then came to a head when the school board also required that its departing CFO sign a confidentiality agreement in return for a cash settlement.

Now the Santa Monica city council has weighed in, voting to withhold funding unless the school district changes its ways. Read the link here. And then tell me that this isn’t happening elsewhere. I’ll believe you. Really.

About the Blog

More than 50 million people in the United States have disabilities, a number that is growing rapidly as the population ages. Experts say disability will soon affect the lives of most Americans. This blog attempts to explore what we know about disability, and to chronicle the efforts of people who are seeking new ways to address familiar challenges.

Join journalist Patricia E. Bauer as she sifts through current news and commentary, bringing you the best information about what's happening now and what it may mean for you and your loved ones.

Read More »

Search

Categories

Read More »

Election 2008

Read More »

Not2BeMissed

Read More »

My Articles & Essays

Read More »

FAQs

Headlines

Read More »

Tropic Thunder

Read More »

News2Use

Read More »

Mailing List

Sign up for our mailing list!





RSS Our RSS Feed



Archives
  • December 2008
  • November 2008
  • October 2008
  • September 2008
  • August 2008
  • July 2008
  • June 2008
  • May 2008
  • April 2008
  • March 2008
  • February 2008
  • January 2008
  • December 2007
  • November 2007
  • October 2007
  • September 2007
  • August 2007
  • July 2007
  • June 2007
  • May 2007