9 Jan 2007

A bit more on the 'Ashley X treatment'

I don't usually write about anything other than my family and our experiences. I was just so shocked about this case, the coverage it was getting, and most of all, the huge bias in blogs and media commentary in favour of the 'treatment', and even worse, how many people were actually expressing views that she 'would be better off dead'. I'm inexperienced at writing about disability advocacy and especially at writing about feminism; but this whole thing just seemed to me to be so clearly an affront on the rights of women, children and people with disabilities.

Many people seem to be saying that we have no right to judge the parents, we don't know the exact particulars of the case, we don't know what it's like having to care for a child like Ashley. I agree with the last 2 points, but I think that it is important to judge this case, and I suppose by disagreeing with it, then I will be, by default, casting judgement on the people behind it. I would blame the doctors and ethicists involved and not the parents, who should, I feel, have been strongly advised against this. And although we don't know all the details, we can discuss what we do know, from the paper published last autumn by the doctors who performed the 'treatment' and from the long blog post written by her father.

Others have defended this by pointing to the '3-month age' functioning of the child as if this means she loses all her human rights. Her father addresses this too saying;

"If people have concerns about Ashley’s dignity, she will retain more dignity in a body that is healthier, more of a comfort to her, and more suited to her state of development as George Dvorsky, a member of the Board of Directors for the Institute for Ethics and Emerging Technologies, alludes to in a related article: “If the concern has something to do with the girl’s dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity. Nor do I believe this is somehow demeaning or undignified to humanity in general; the treatments will endow her with a body that more closely matches her cognitive state – both in terms of her physical size and bodily functioning. The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.”"

This is the ethics advice they have received. Oh dear.

It was interesting to read the comments on my own post. I was entirely unsurprised to see that all the Autism Hub writers who commented, were also very concerned about this and thought it was completely wrong. The main voice of dissent (here anyway) ended up sounding very extreme and irrational.

I want to point anyone interested in the direction of some of the great blog posts I've read over the past few days. First, there's Thirza's post, Growing Up with Sky, where she writes lovingly about her disabled sister and gets pissed off about the 'Ashley treatment'. She addresses in particular, the concept of mental age and how this applies to her sister's life.

Wheelchair Dancer has written again about this, and quoted the UN Convention on the Rights of Persons with Disabilities, including;

Article 17 - Protecting the integrity of the person

Every person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others.

I think that says it all.


Maddy said...

I think a great deal depends upon which web sites you are visiting. I try and check out opposing arguments so that I can try and gauge [understand?] who is saying what and why?
I'm afraid that as with most politically charged debates, both ends of the 'spectrum' exist.
Best wishes

Sharon McDaid said...

Hi McEwan. That is true and it's why I have presented the most common arguments people have in favour of the treatment. I have to admit, I was a bit shocked to read just how few Guardian columnists/readers were able to see this as a human rights issue, since it's the paper I read most often, being a bit of a lefty liberal myself.

Unknown said...

I hope my comment was inspiring at your first blog mentioning Ashley's treatment.That day reading the newspaper in train going to work about the 'Frozen Child'..i was totally devasted and depressed for the whole day.I couldnt do any work and kept reading on line about this treatment.i was trying to see myself in the parent's shoes...My son will be 6 in 4 years.He is already very heavy and I am a lone parent..would i ever put him through all that surgery so young,so valnurable and so defenseless? would i take such risk and give him to hope of change?no-
I didnt even wanted him to be circumsided.He was just trying to get out of me for hours in agony!why should I put him through more?I didnt even know then, he had problems...Right now he can only eat mashed food.His head is really weak and if not supported well, he can choke food and get a chest infection...He got a bad pneumonia once..doctors wanted to convince me to place him a feeding tube in his tummy! I didnt even allow that! I rather have him sitting in a special chair that supports his head in the right palces!I wish only peace for my child.He has being through 3 surgeries when he was only 2 months old but they were a matter of life and death...
I dont wish to ever take him to hospital again unless it is very critical...I dont like watching any children suffering or parents in the hospitals!
I hope Ashley's parents will never have any regrets...and live in Peace..

Anonymous said...

I think the disabled community is off base on this issue. Ashley's family has stepped forward to take care of their profoundly disabled daughter. They are taking this action to allow them to continue caring for her in the manner she has come to expect.

Rather than applaud them, the disabled community has vilified them. The reason for the vilification seems to be the fears of the disabled community, and not what is in Ashley's best interests.

The Disabled community had de-personalized Ashley in order to further its agenda, and that what is inhuman.

Anonymous said...

Anonymous says that the disabled community have dehumanised Ashley. It is unfortunate but you have to dehumanise the patient in an ethical case in order to make a fair decision.

Ashleys father makes very good arguments for the surgical infanticisation of his daughter but it does not necessarily follow that it is the right course to take.

When weighing up good against bad in a bioethical sense it is generally agreed that intention should be good evn if the bad can be foreseen and that the bad should not be the cause of the good.

In this case the good intention is a direct result of an act of surgical mutilation which would be absolutely condemned if performed on an able bodied person of the same age, parental consent or not.

I have seen many postings supporting Ashleys treatment from the able bodied community often accompanied by such wise words as "She is barely human" and " She would be better off dead". Are these the sort of people who should be speaking at all?

Sharon McDaid said...

To anyone who commented; sorry for the delay in replying, I wasn't able to get online for a few days.

Hello Alexandra and thank you for commenting here and on the other post. I am glad to read about how committed you are to your son's well being.
I think that parents of children with extra needs have a growing curve, and it seems that even though he is only 2 years old, you are already very in-tune to your son's needs and know how best to care for him. I can only wish you both all the best.

Anonymous 1, I disagree; those who have spoken out against Ashley's treatment have not depersonalized Ashley and that isn't what is inhuman. Anonymous 2, thank you for an excellent explanation of why this is so.

Anonymous said...

True! Everyone is entitled to their opinion but not to judge. I am so irritated at all the negative comments people are making about families that try to make their child more comfortable and happy. EPESIALLY, when those people don't know what the hell they are talking about. Not one single blog that I have read that opposes the decision of Ashley's parents has a child with global disabilities, therefore you may not judge, speculate maybe. I'm so sick of ethiticts and members of transhumanist groups saying how unethical the decision is and the talk about designer disabilities, and oversimplifying. Ashley is happy and she is healthy and won't have to fact many health risks with having a uterus and breasts. Do you think she needs to deal with additional complications? No, she just wants to be happy and with her family. I suppose you all just think she would be better off in a home, because that's what happens to these children whose families can no longer care for them theirselves. Many of these families can't afford in home care and all they want to do is keep their child at home so THEY can take care of them, not some pervert in a group home where they get paid $10 an hour. I'm sorry, I'm rambling, but you people don't get it. Her parents didn't do this for mere entertainment and that's how you are all making it sound. As a single parent of a child with a global disability you bet your ass I will do whatever it takes to keep my child happy, healthy and at home in my care where I want him and where he wants to be.