In the upcoming Winter Issue of the Council’s People & Families magazine, there is a column I wrote about growth attenuation and its use, along with radical surgical procedures, on people with developmental disabilities. The issue is an important one for this community. These kinds of “treatments” have been inflicted on people with developmental disabilities throughout history. Often with the best of misguided intentions but devastating for the individuals regardless.

Like those, this one should be stopped.

Instead, they are continuing and even increasing.

Growth attenuation, the process of using hormone injections (estrogen) to keep children, mainly female, from getting excessively tall, as determined by parents and doctors, has been used since the 1960’s.

In 2007 a couple, working with doctors and the hospital they were connected with, gave their daughter Ashley, who has significant developmental disabilities, the hormones and went further by surgically removing the six-year-old’s breast buds and uterus.

The rationale from the parent’s perspective was that Ashley would be easier to care for as she got older. She would never have children, they said, and so would not need to breast feed and developed breats would get in the way of her shoulder harness. Also, not being expected to ever have children they wanted to spare her the discomfort of menstural cramping by cutting out her uterus.

For me this is another in a long line of egregious things that have been done to people with developmental disabilities throughout history under the rationale of being in their best interest. They are most often done by good people looking for good solutions to issues they obviously don’t fully understand. For, the instances of where these kinds of “treatments”—ones that were somehow deemed to be okay when applied to people with severe disabilities but would never have been acceptable if proposed for anyone else—are eventually discredited far outnumber the ones that remain creditable. In fact, off hand, I can’t think any from the latter category.

The rationale for the so-called Ashley treatment fails both broad counts.

First, it’s unnecessary as to the parent’s primary concern—care and inclusion of Ashley. The family support movement has long moved past extreme measures to address the needs of people with severe and profound developmental disabilities. Even institutional placments, thought still practiced, are rejected by the overwhelming majority of parents I know. With the proper information and support families, parents and other caretakers all over the country are managing situations as challenging, and more so.

Secondly, it continues to be detrimental to people with developmental disabilities when medical and other professionals recommend procedures for them they would never recommend for other based on their certainty that the individual doesn’t have the cognitive skills to know or care.

There have been numerous instances of miscalculations in this area. We’ve seen it time and again.

I remember reading about a resident of a developmental center that was about to close in Massachusetts. This resident was used as an example of why the institution needed to stay open. He was completely palsied and uncommunicative. Doctors and experts said he would always be this was and would always have the mind of a three-year –old. A year after the closure of the center the researcher and writer of the original report visited the group home where the man had moved. She was amazed. He had range of motion in three limbs and a growing vocabulary of 150 words.

The story moved me deeply. As a new member of the Council staff I was still feeling my way in the advocacy arena of this community. Like many people with limited first hand interactions with people with servere and profound disabilities I thought that what you saw was what you got. And would be that way always. I trusted the medical professionals to know what was possible and what was not.

I’ve grown since then.

Everyone should have that same opportunity, whether they are able to take advantage of it or not. Opportunity should not be predicated on fulfillment. If it was it would be denied in some ways to all of us.

I’ve used up my space for this week. But this conversation needs to continue. Below are two more links. Also a search of “Pillow Angel” “The Other Story of a Pillow Angel” and Peter Singer’s Op Ed in the New York Times in 2007 will give those who are interested more to digest.

And please let us know what you think.

Issues like this need the bright light of exposure and discussion.

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Disability in Focus