Monday, 8 October 2007

Ashley's Back

Well, it looks as though the Ashley Treatment is about to hit the headlines again. A quick trip thru the blogosphere suggests that no one else has mentioned this yet and maybe no one else cares. But I do.

A mother has asked that her 15 year old CPer daughter undergoes an unnecessary hysterectomy. Different sources online suggest that the surgery is "being considered by the doctors" and that "a doctor has agreed and is seeking legal advice/permission".

From The Times:
A severely disabled teenager’s womb may be removed to improve her quality of life, and not because it is medically necessary, in what is thought to be a British first which has reignited debate over medical ethics.

Disabled charities yesterday condemned the plan while experts in the field cautioned against proceeding with such radical surgery before all other options were exhausted.

Doctors are seeking legal approval to perform a hysterectomy on Katie Thorpe, 15, in a radical solution to her mother’s fears that the girl, who has cerebral palsy, will not be able to cope with the onset of adulthood.

Alison Thorpe wants the operation to go ahead at St John’s hospital in Chelmsford to protect Katie from the “pain, discomfort and indignity” of menstruation.

Legal guidance is being sought because Katie, who cannot walk or talk and is believed to understand little of what is said to her, is unable to give consent.

News of the procedure sparked controversy yesterday, with charities denouncing the surgery, describing it as a “breach of human rights”.

Simone Aspis, of the United Kingdom’s Disabled People’s Council, said the operation was “unacceptable” when Katie could avoid menstruation through alternatives such as the Pill.

“Katie, like any other nondisabled teenager, has the right to grow up with her body intact, and where she can have the same choice as anyone else to give birth to her own children.”

She added: “We know of plenty of disabled people both with physical impairments and learning difficulties who give birth to their children and are great parents. This is nothing more than eugenics and abuse of Katie’s human rights.”

Gary Birkenhead, head of the programme development unit at Scope, the disability charity, said that while it was tough to bring up a disabled child, “that is not a reason to have to go to these lengths”.

However, Paul Hardiman, a consultant gynaecologist at the Royal Free and University College London, said the matter was not black and white. “I think you have to balance the protection of her human rights against the distress she is going to suffer if something isn’t done,” he said.

But he added that a hysterectomy was a radical and irreversible procedure that should only be considered as a last resort because less invasive options were available.

Faced with a patient in similar circumstances this year, Dr Hardiman recommended a device that releases hormones when it is inserted into the womb, slowing down or stopping menstruation. “It is as effective as sterilisation. but a key issue is that it is also reversible. A hysterectomy seems such a major and final thing to do to somebody.”

Doctors initially suggested contraceptive pills and injections to stop Katie’s periods starting but Ms Thorpe ruled them out because of the risk of her wheelchair-bound daughter suffering from thrombosis.

She said the decision to go ahead with surgery was an agonising one, but she believed it was the right one.

She told The Sunday Times: “Katie has an undignified enough life without the added indignity of menstruation. She will not understand what is happening to her body and it could be very frightening for her.

“Katie would be totally confused by menstruation. She could not manage it by herself. She could not keep it discreet; she cannot be private.”

The case echoes that of an American child known as Ashley X, who underwent surgery and hormone treatment to keep her at the size of a six-year-old child because her parents believed it would make her life more comfortable. When her case was made public in January, her parents’ argument that “keeping her small” would improve her quality of life was criticised by advocates for the disabled.

Ms Thorpe, who looks after Katie around the clock, said that her critics should “come and spend a week with me, walk in my shoes”. She said: “I’ve spent 15 years with my daughter. As a mother who loves her dearly, I am trying to do the best I can for her. I believe this is right for my daughter. It might not be the right thing for other children with cerebral palsy, and I’m not advocating that every disabled girl should have a hysterectomy, but the choice should be there.”

Maybe I'm naive but although I was sure we hadn't heard the last of Ashley and her "treatment", I am shocked that we have a case over hear. And even more shocked that it's for a person with CP. CP, damn it.

I'm not saying that I think this sort of "treatment" is acceptable for some disabilities but not others - just that I never thought it would be considered for a girl with CP basically because of what CP is.

And mostly, because CP is what I have (and it doesn't have me) and the idea of something like that being done to someone just like me in terms of diagnosis etc doesn't just sicken me. It scares me.

Some relevant/interesting links

Wikipedia article on The Ashley Treatment.

Ashley's Parent's blog

Link to the article online (as reprinted above) with the comments left by people. I don't know how long that will be a live link.

My original entry on the Ashley Treatment when the story first broke in January

Most importantly - Petition being run by Scope for the human rights of disabled children and against the Ashley "Treatment" 


Kathryn said...

Emma - thanks for posting about this. I am going to link to you tomorrow. I did hear about this on NPR and was totally appalled. They had the mother on as well as a woman from some carer organization in the UK who was disagreeing with the mother. I was just appalled. The mother said the surgery was just like any other "nonessential" surgery...

I care. It scares me for Ellie. It seems so mysongenistic. You don't hear about the disabled boys being castrated - which would be equally appalling. But so far it has been the girls suffering these assaults. Besides being a disability rights issue it also feels alot like a feminist issue as well. I would hate to have something like this to happen to her after I am gone just because she can't say ya or nay and it makes it easier for someone else to care for her.

Sair said...

i am not saying at all that hysterectomys are the way, not at all, however there are few choices when it comes to menstruation. medicine should investigate ways of lessening menstrual effects short term without the pill's side effects!!!

i saw katie on gmtv the other morning and they did not speak directly to her once. nor did she have any communication devices. that to me was scary in itself! when will people stop thinking that if you cannot verbally communicate you cannot comprehend/communicate by other means.

Jacqui said...

Thank you for the review. Is it just me or do we as a society seem to be jumping back into the dark ages. You only have to read about Anne McDonald to see how presumptions can be so wrong.

There are so many ways out there to lessen the effects of menstruation. But even if she did get her period - so what? Unless she gets them, how do you know how severe they will become. How unmanageable? And unmanageable for who? And when did having your period become so undignified?

This is a very sad day. Someone needs to step in and stand up for this girl's rights because obviously the parents aren't.

When will we learn? « Terrible Palsy said...

[...] 2007 at 12:27 pm | In Blogroll, cerebral palsy | Tags: ashley treatment, cerebral palsy, disability Emma has written about the continuity of the Ashley treatment in the UK. It seems that now girls with CP [...]

The Life and Times of Emma said...

[...] The Life and Times of Emma The assorted ramblings and writings of a 25 year old Brit who just happens to be a Wheelchair Princess « Ashley’s Back [...]


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