In discussions with doctors at Seattle Children's hospital they devised the treatment: removal of Ashley's uterus to prevent fertility, excision of early buds on her chest so that she would not develop breasts, and medication with high doses of oestrogen to limit her growth by prematurely fusing the growth plates of her bones.
Most of the comments I've read on the BBC site are backing the parent's decision. Lots of people are saying that unless 'you have walked a mile in their shoes', you cannot criticise their decision. I'm wondering if anyone is willing to put themselves in Ashley's shoes?
The parents insist that the treatment, carried out in 2004, was conceived for Ashley's benefit and not their own ease or convenience. With a lighter body and no breasts, Ashley will have fewer bed sores and lie more comfortably. And a smaller Ashley can be cared for and carried. "As a result we will continue to delight in holding her in our arms and Ashley will be moved and taken on trips more frequently instead of lying in her bed staring at TV or the ceiling all day long," they write.
On the Guardian blog, there are all there are several clever-sounding and highly disablist comments like the following;
Human rights are concerned with the individual, preventing harm to the individual, preventing violation of their wishes and preventing the removal of their freedoms of choice. The child in this case has no wishes to violate, and the action taken will not limit her freedoms of choice for the same reason. The child's psyche will not experience the moral indignation we might jump to, but she will certainly be able to feel pain. If the bedsores explanation is medically correct, the right for the child to remain in comfort and free of bedsores is justification enough.
I have left a comment of my own on the BBC site but can't be bothered to engage with the 'superior' beings who write on Comment is Free.
I managed to see an interview on the BBC News 24 channel with a woman from a UK disability organisation (I didn't catch which one) and a doctor from the Great Ormond Street Hospital in London. They both spoke against what has been done to this child, the woman gave a brilliant interview making all the points about how Ashley's human rights had been disregarded, how technology is available to enable many people to move and communicate.
I think this is horrible and I have tremendous pity for this little (and staying that way) girl. I dislke the name they've given her; 'Pillow Angel'. I wonder if there is any evidence showing that women get more bed sores than men? I say that she has been mutilated in a way that should shock anyone who cares about human rights, particularly the rights of disabled people and women. If the parents are concerned that she could be impregnated, contraceptive pills exist. There are even Pills that prevent menstruation, though I personally don't see why dealing with bleeding once a month would be such an issue. They say that;
Unlike what most people thought, the decision to pursue the “Ashley Treatment” was not a difficult one. Ashley will be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully-developed breasts, and with a smaller, lighter body that is better suited to constant lying down and is easier to be moved around.
She is only 9 years old. Who can say what her outcome would have been?
I would agree that the parents, and all those caring for children who need so much help and attention, deserve to have all the support and access to enabling technology they need and that really doesn't happen now, either here or in America. But this is just wrong. And yes, I am entitled to judge.
For a good analysis of the issues, read Wheelchair Dancer. For a gut reaction, go to Cheaper Than Therapy.