Ashley - the disability perspective

By Geoff Adams-Spink
Age & disability correspondent, BBC News website

Ashley is the subject of a raging ethics debate

The case of Ashley X - the American child with learning disabilities who has had surgery and other treatment to keep her body "childlike" - has triggered a debate about medical ethics. But what do disabled people, themselves, have to say about the matter?

Disability rights campaigners often accuse health professionals of over "medicalising" disability and ignoring the social aspects.

This 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.

This is unnecessary treatment to deal with what is, essentially, a social problem Agnes Fletcher Disability Rights Commission

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.

Inadequate social support

Not surprisingly, the Disability Rights Commission (DRC) attributes the difficulties being experienced by Ashley's parents to inadequate social support.

If that were in place - the argument goes - there would be no need for Ashley to be kept in a permanent state of childhood.

To make such a choice for their daughter is an abuse of this young woman's human rights Andy Rickell Scope

"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.

"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."

Although what the DRC calls the "care crisis" is part of the equation, there are other considerations of a moral and ethical nature that have been fiercely debated by contributors to the Ouch! website - the home of disability at the BBC.

Some readers question the suitability of the parents, others the professionalism of Ashley's doctors - both should be prosecuted, argues one reader.

"It seems the parents are being allowed to manifest their fears for the child's future in an extreme way," argues another reader.

Basic rights

For Andy Rickell from pan-disability charity, Scope, 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."

Other Ouch readers worry that the case sets a dangerous precedent for, "carers being able to sculpt disabled people into something more convenient for them".

The consequence of Ashley growing into a fully developed adult could well be that she would have been forced to live in institutional care if her parents were unable to look after her.

"Would that make her any better off?" wonders another reader.

And he goes on: "If this girl is to have any kind of meaningful equality it will surely be equality with a small child, not adult equality as she will never be capable of the independent decision making needed to function as an adult."

Restricted view

But this view is strongly countered by another contributor who argues that society has too restricted a view of the capabilities of people with profound learning disabilities.

"People with even the most supposedly severe and profound learning disabilities - people who have been assumed to have no 'intelligence' or means of communicating their feelings at all, people who have been explicitly told they were nothing more than an 'empty shell', have been facilitated to find methods of communication with which they have incredibly clearly expressed themselves."

"[They] have absolutely proven themselves to be adults, with all the feelings that adults have, including sexuality and including the same desire that any adult has to have autonomy over their own bodies and lives."

Overwhelmingly, the disabled community - as represented by participants in Ouch's messageboard discussions - seems to want to claim Ashley as one of their own.

In other words, a disabled person whose human rights need to be carefully protected and whose fate has the potential to be shared by a much larger group of people.