Ability Forum

[Lovingheart]

Hospital rebuked for stunting disabled girl’s growth

Chris Ayres in Los Angeles

Doctors who kept a severely disabled six-year-old girl artificially small by removing her uterus, appendix and breasts to “improve her quality of life”
broke the law, an investigation has found.

The case of “Ashley X” created a worldwide controversy when her father published a blog justifying his decision to go ahead with the radical treatment.
Feminist and disability groups were particularly angered by the case, arguing that it brought to mind the forced sterilisations of the 1920s.

Now the Washington Protection and Advocacy System (WPAS), a private group with federal investigative authority, has ruled that Seattle Children’s Hospital
violated Ashley’s rights by performing a hysterectomy without a court order.

“Washington law specifically prohibits the sterilisation of minors with developmental disabilities without zealous advocacy on their behalf and court approval,”
the group’s executive director said. The organisation said it had no plans to sue.

The hospital acknowledged the error and said that it would make sure all future procedures involving the controversial “growth attenuation therapy” had
court approval. David Fisher, the hospital’s medical director,” said. “The parents consulted an attorney and obtained a legal opinion that concluded the
treatment was permissible without a court order. This is where our system broke down. We take full responsibility.”

Ashley X, now 9, has a condition called static encephalopathy. She cannot walk, talk, keep her head up in bed or swallow.

Her parents argued that “keeping her small” was the best way to improve her quality of life. “Ashley will be moved and taken on trips more frequently and
have more exposure to activities and social gatherings instead of lying in bed staring at TV all day,” her father wrote in his blog.

By remaining a child, he went on, Ashley would have a better chance of avoiding everything from bed sores to pneumonia. The removal of her uterus, was intended
to ensure that she would never have a menstrual cycle or risk developing uterine cancer. Nevertheless, critics accused the parents of maiming their daughter
to make life easier for themselves.

The treatment, approved by the hospital’s ethic panel as in Ashley’s best interests, stunted her growth at 4 ft 5in (1.3m). She now weighs about 5st 5lb.
The panel debated the hysterectomy at length, ultimately siding with the family’s lawyer, who said the primary goal was not sterilisation, but to spare
her the trauma of menstruation.

But Mark Stroh, of the WPAS, said the treatment had wider implications. He said: “It raises serious concerns about the discrimination faced by people with
disabilities, discrimination which is often based in stereotypes about their potential and value as individuals.”

The Times, Thursday 10 May

www.bbc.co.uk/ouch/news

_________________
Warmly,

Amit Bhatt
New Delhi, India
Mob: +91-9013323229
"Alone we can do so little, together we can do so much"-Helen Keller.

Hospital rebuked for stunting disabled girl’s growth

Chris Ayres in Los Angeles

Doctors who kept a severely disabled six-year-old girl artificially small by removing her uterus, appendix and breasts to “improve her quality of life”
broke the law, an investigation has found.

The case of “Ashley X” created a worldwide controversy when her father published a blog justifying his decision to go ahead with the radical treatment.
Feminist and disability groups were particularly angered by the case, arguing that it brought to mind the forced sterilisations of the 1920s.

Now the Washington Protection and Advocacy System (WPAS), a private group with federal investigative authority, has ruled that Seattle Children’s Hospital
violated Ashley’s rights by performing a hysterectomy without a court order.

“Washington law specifically prohibits the sterilisation of minors with developmental disabilities without zealous advocacy on their behalf and court approval,”
the group’s executive director said. The organisation said it had no plans to sue.

The hospital acknowledged the error and said that it would make sure all future procedures involving the controversial “growth attenuation therapy” had
court approval. David Fisher, the hospital’s medical director,” said. “The parents consulted an attorney and obtained a legal opinion that concluded the
treatment was permissible without a court order. This is where our system broke down. We take full responsibility.”

Ashley X, now 9, has a condition called static encephalopathy. She cannot walk, talk, keep her head up in bed or swallow.

Her parents argued that “keeping her small” was the best way to improve her quality of life. “Ashley will be moved and taken on trips more frequently and
have more exposure to activities and social gatherings instead of lying in bed staring at TV all day,” her father wrote in his blog.

By remaining a child, he went on, Ashley would have a better chance of avoiding everything from bed sores to pneumonia. The removal of her uterus, was intended
to ensure that she would never have a menstrual cycle or risk developing uterine cancer. Nevertheless, critics accused the parents of maiming their daughter
to make life easier for themselves.

The treatment, approved by the hospital’s ethic panel as in Ashley’s best interests, stunted her growth at 4 ft 5in (1.3m). She now weighs about 5st 5lb.
The panel debated the hysterectomy at length, ultimately siding with the family’s lawyer, who said the primary goal was not sterilisation, but to spare
her the trauma of menstruation.

But Mark Stroh, of the WPAS, said the treatment had wider implications. He said: “It raises serious concerns about the discrimination faced by people with
disabilities, discrimination which is often based in stereotypes about their potential and value as individuals.”

The Times, Thursday 10 May

www.bbc.co.uk/ouch/news

_________________
Warmly,

Amit Bhatt
New Delhi, India
Mob: +91-9013323229
"Alone we can do so little, together we can do so much"-Helen Keller.

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