|Posted by Mary Johnson|
January 5th, 2007
The most recent act in the ongoing circus that seems to almost routinely surround disability issues in the media is the doctors-and-ethicists show about the 9-year-old Seattle girl, Ashley, whose parents coyly won’t let themselves be identified, but who have chosen to have doctors perform operations to keep her an eternal child.
Written that way, it sounds like science fiction, Unfortunately, it’s all too real.
Ashley is disabled — and that, it seems, excuses things.
“The parents of a severely mentally and physically disabled child have stunted her growth to keep their little ‘pillow angel’ a manageable and more portable size,” is how reporter Lindsey Tanner’s widely distributed AP story puts it. “The bedridden 9-year-old girl had her uterus and breast tissue removed at a Seattle hospital and received large doses of hormones to halt her growth. She is now 4-foot-5; her parents say she would otherwise probably reach a normal 5-foot-6.”
Ashley’s being disabled excuses what would never be countenanced — or even considered — were a “normal” child to be mutilated to ensure she never matures, never menstruates, never has breasts….never gains weight. Can you imagine such a series of surgeries as Ashley has undergone even being considered, much less condoned, by a hospital’s ethics committee, were Ashley not disabled?
The weight is the issue for the parents, according to their manifesto on their Ashley’s Treatment blog: if she gains weight, you see, they won’t be able to care for her anymore.
There are so many things wrong with this travesty of “care,” on so many levels, that it’s hard to know where to begin. But let’s start with how the media is approaching this story.
“The case of Ashley, a severely disabled child from Seattle whose parents have taken the decision to have their daughter’s natural physical development arrested, is as controversial as it gets,” says The Times of London’s Sarah Vine this morning. And there we have the true reason for the media frenzy: Controversy. Not just controversy, but controversy with No Real Right Or Wrong!!
“Right or wrong, the couple’s decision highlights a dilemma thousands of parents face in struggling to care for severely disabled children as they grow up,” is how Tanner explains it.
Sarah Vine’s take on the issue may be the closest we’ll come to getting a fix as to why this story has become the headline-grabber it has. Vine writes,
Psychologically, it is one thing to care for a disabled child; it is quite another to care for a disabled adult, especially if that adult is your son or daughter. Those who talk about fundamental human rights should imagine themselves changing their daughter’s sanitary dressing; or worrying about what might happen if, after they’re gone, she ends up in a care home where some unscrupulous, or perhaps uncomprehending, co-patient takes advantage of her.
News about Ashley’s Treatment came out last fall, but it made few headlines until the L. A. Times published Sam Howe Verhovek’s story on the case on Wednesday (Parents defend decision to keep disabled girl small). The British news media seized on it right off: The Guardian, The Times and the BBC have all chewed on it by now; The Mail is reportedly flying a reporter to Seattle for an in-depth report.
Back on this side of the pond, Court TV’s Nancy Grace had a run at it last night.
On Grace’s show, it was Dr. Jeffrey Brosco, “a pediatrician at the University of Miami School of Medicine,” telling Grace’s TV audience that “argument that the physicians and family make is that this is in Ashley`s best interests,” and Dr. James Hughes, “the executive director of the Institute for Ethics and Emerging Technologies,” telling Grace that what the parents have done to their child is “no crime at all.” (See transcript.) These were the “experts.”
In Tanner’s story, the experts were the ubiquitous ethicist Art Caplan of the University of Pennslyvania and Dr. Joel Frader, a medical ethicist at Chicago’s Children’s Memorial Hospital, making the point that “as a society, we do a pretty rotten job of helping caregivers provide what’s necessary for these patients.”
Uh… where were the crips’ voices in all this?
Grace’s producers did, in fairness, bring on Lawrence Carter-Long of the Disabilities Network of New York City — but where, one might ask, are the women with disabilities? Where is their voice in the public debate?
Carter-Long had the grace to raise the issue on the air:
why [weren’t] people with disabilities addressed in this matter and why [have] we left it to the ethicists and those folks in the ivory towers ?
Imagine a controversial story about a breast cancer treatment. Would producers and editors leave out women’s voices? Do they even know how to find expert disability voices?
Ashley’s Treatment in the media is all too typical of the way stories about a disabled person’s life get chewed up and explained by anyone and everyone but the people who live those lives. “When it comes to disability, everyone thinks they know what’s best for us,” said one disgruntled disability rights activist to me years ago. “It never occurs to them to ask us.” I’ve often had occasion to recall that comment.
“I started to wonder how this story might be different if Ashley were a boy,” wrote Cory Silverberg on his blog.
Would the parents be removing the boy’s testicles? Would they get permission to have the entire penis removed? I don’t think it would ever enter their minds if they had a little boy. Boys need to grow big and strong. Boys need their penises. Boys don’t get sexually assaulted. This would be going down very differently if Ashley were a boy. . . .
“Because it’s easier to carry her around” is not a compelling reason to permanently stunt someone’s growth.
“Because I couldn’t stand the thought of her being pregnant” is not a reason to permanently make someone sterile.
“Because I can’t imagine wanting to live like that” is not a reason to take someone’s life.
The story that finally gets it right comes late on Friday from the BBC’s “age and disability correspondent” Geoff Adams-Spink. The furor over Ashley’s Treatment, he writes,
goes to the heart of the debate over two opposing ways of looking at disability - the social and medical models.
The medical model tends to favour using surgery, drugs and other interventions to “normalise” a disabled person. The social model stresses that disability is caused by barriers in society - physical or attitudinal - that turns a person’s impairment or medical condition into a disability.
Disability rights legislation is based on the principles of the social model - hence the requirement for businesses to make their premises accessible.
Note, first of all, that the BBC has such a reporter. The BBC also has an entire website devoted to the UK disability movement — called Ouch! – which Adams-Spink refers to in today’s story as “the home of disability at the BBC.” And when a major media player is interested enough in a social issue to devote a beat (and a website) to it, the public gets more informed reporting.
Because he knows where to look, Adams-Spink finds strong public reaction from Britain’s big disability groups.
“This is unnecessary treatment to deal with what is, essentially, a social problem: the poverty and lack of support faced by families with disabled children in both the United States and Britain,” said the DRC’s Agnes Fletcher.
(The DRC is the Disability Rights Commission, a government body.)
Fletcher tells Adams-Spink, “Ashley’s parents say that they cannot afford paid carers to come to their home to support her and this is one of the reasons they give for the treatment; but no one should have medical treatment that is of no benefit to them without their consent.”
It’s about time this point were made in a big media outlet.
Andy Rickell of Scope, a national disability group, insists to Adams-Spink that “the issue is one of fundamental rights.”
“To make such a choice for their daughter is an abuse of this young woman’s human rights and has worrying implications for other disabled people,” he said.
“We would expect any similar case in the UK to be taken to court and the rights of any disabled child protected.”