Campaign to prevent Ashley case

LDDA - The Liberal Democrat Disability Association <info@disabilitylibdems.org.uk>

Campaign to prevent Ashley case

January 17, 2007 8:29 AM

A British disability charity is trying to ensure that an "Ashley X case" could not happen to a child in the UK. Ashley is the American child who has been medically "frozen in time" to stop her body developing to adult size.

Scope has taken out full-page adverts in national papers asking people to sign a petition in favour of protecting disabled children's rights. The campaign says the treatment given to Ashley, who has severe brain damage, is an abuse of human rights.

Scope already has the support of other disability organisations, including RADAR, the National Autistic Society and Disability Awareness in Action. Disabled writer and actor Mat Fraser has added his voice to those who want to ensure that such a situation could not arise in the UK.

"We mustn't change the child to fit society - we need to change society to meet the needs of the child," said Scope's community development director, Bob Benson.

Scope wants the government to increase funding so that the families of disabled children have access to the right support. It says that thousands of families are unable to buy essential equipment like wheelchairs, hoists and communication aids.

And the organisation points out that the "postcode lottery" for respite services means that many parents of disabled children are unable to take a break. The government is also being urged to introduce legal and other safeguards to ensure that no child in the UK is subject to what Scope calls "the Ashley treatment".

"If we are to prevent this abuse of the human rights of disabled children in the future, the government must face up to the pressure families are under and increase the money and support available to them," said Mr Benson.

Among those who have decided to speak out on the issue is Sandy Collington, a Scope trustee whose daughter has cerebral palsy. "The idea that we should prevent our children from developing into adults is appalling," she said. "It's very sad that the parents of Ashley X felt they had to resort to these measures - the rights of the child should not be sacrificed because the right level of support is lacking."

Scope is asking those in favour of its campaign to express their support via its website or by text message.

Ashley X was born with severe and permanent brain damage, called static encephalopathy. The nine-year-old has the mental ability of a three-month-old baby and cannot walk or talk. Her parents argue that keeping her "frozen" as a girl rather than letting her go through puberty and growing into a woman will give her a better life.

They authorised doctors to remove her uterus to prevent menstruation, to limit her breast growth through the removal of breast buds so that she would not experience discomfort when lying down, and give her doses of hormones to stop her growing taller.