>The Ashley Treatment is back

>I will write more about this later because this is a story that needs addressing.  I need some time to think on it though.

But I’ve just read that the Ashley Treatment has been decided by an ethics committee to be “Morally Permissible” in certain circumstances.  See: “Stunting disabled children’s growth is ‘morally permssible” group says” (h/t to BendyGirl).

They only looked at growth attenuation and not all the other issues that were involved in the treatment of Ashley X.  The very idea of it makes me feel sick however.

Other entries I’ve written about The Ashley Treatment and about Ashley X

>Look Great in 2008

>It’s Wednesday.  And on Wednesdays I check in for Tales from the Scales.

My scales seem to be broken because they wanted me to think I had lost 40lb in one week.  One week, people!  totally not possible, although a lovely number to see!  So I suspect a new battery will be being bought at the weekend or maybe some new scales.

I’ve still been pretty  crazy busy over the last week, travelling all over the country to see friends and having a surprise visit from another friend.  So I haven’t been focusing too much on the weight loss thang.  And I have been drinking cocktails.  Cocktails are yummy and they did a lot for my cold which is finally now beginning to clear up.   So not much focus on anything related to the challenge but I start again today.  It’s always been a part of my plan to allow myself flexibility and not to deny myself anything and so I don’t feel guilty about this week.

One thing I have noticed a couple of times this week is that I’ve been mindlessly eating.  BUT the fact that I realised and stopped is a good thing!

Measurements again next Wednesday day, it’s very tempting to do them today but four weeks seems like a better period of time to leave it methinks!

If you have a spare couple of minutes and don’t mind my going completely off the weightloss topic, please take a look at these links below, they mean a lot to me.

Petition being run by Scope for the human rights of disabled children and against the Ashley “Treatment”

Entry I wrote explaining why this topic is coming up again and linking to information about the so called “Ashley Treatment”

>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” 

>The Ashley Treatment

>In case you haven’t heard about it this is a link to Ashley’s parents website which explains what they had done to her and their reasoning behind it. It makes some very interesting reading.

The short version is that Ashley X is 9 years old and has profound physical and learning disabilities. Her parents love her dearly (that much is clear from their writing) and call her their “Pillow Angel”. They have taken steps medically to ensure that she remains in a prepubescent state forever.

It’s not something I agree with and it is something I am glad wasn’t done to me. However they did do what they think is best for their child and really that isn’t something we can condemn. Realistically I think this probably wasn’t the best choice for Ashley and that they haven’t considered several issues. It really is, as Jacqui said, a case of damned if you do and damned if you don’t.

I do worry about the fact that it was passed as a suitable treatment by an ethics board and also by reports that Ashley’s doctors have had requests from other parents for their children because at the end of the day this is not something that should be being done to children. Especially as doctors frequently give incorrect prognosis. What would happen if that was done to say, a two year old and then it turned out the situation wasn’t as bad as anticipated. It’s a bit of a slippery slope.
I am physically disabled and I know a lot of other people with physical disabilities. Once or twice I have been faced with people who assumed I also have cognitive difficulties but I also know a few people who have CP (and other disabilities) to such an extent that this is a regular occurance for them. I also know several people with learning disabilities (less severe than Ashley’s appear to be) and I would hate to think that they would be subjected to part of the Ashley Treatment. They are all valid members of society and so is Ashley. They and Ashley deserve to be treated as such and not reduced to permanent childhood.

Also, Pillow Angel is a horrible term but as Jacqui said in her reply to my comment on her blog (talk about a run on sentence!) some people think the fact that she calls her blog Terrible Palsy is out of line but she finds it funny and so do I and may that is the case here. It (pillow angel) works for them and whilst we may not like it not all of us can be as militant about people first language etc as I and others are. A lot of the language is offensive if you believe in people first language and some of the sentiments or facts presented are confusing or incorrect. But, you know what? Live and let live. Sometimes it’s all people can do to survive and I wonder if that is the case here.

Ashley was treated as she was treated, that cannot be undone. And whilst I do have many many issues with this I think we cannot truly condone the parents. I blame the doctors and other support agencies who allowed it to get to a stage where her parents felt they had to do this and then carried it off.

Don’t blame the parents. Yes, a lot of parents would not do what Ashley’s have done but at the end of the day sending them hate e-mail or whatever isn’t going to change anything. What we need to do is make sure this never happens to any other child.