"A child should not be modified to fit society but instead that society needs to adapt and become more inclusive of disabled people": SCOPE
By John Connolly
LONDON, January 18, 2008 (LifeSiteNews.com) - Doctors in the UK have decided against performing a hysterectomy on a 15-year-old girl with cerebral palsy, an operation the girl's mother requested to prevent the girl from experiencing the pain of menstruation.
Alison Thorpe, whose daughter Katie suffers from cerebral palsy and cannot walk or talk, made the request to doctors on the basis that menstruation would be an infliction of pain and indignity on Katie. Following an outcry from disabled rights groups, the doctors changed their minds and said they would only operate if there was a medical reason to do so.
"This means that if and when Katie does start her periods she could endure months and months of pain and discomfort before anything is done," said Thorpe. "I think the Trust has bowed down to what they perceived to be public opinion. But I have had overwhelming support from the public, both able-bodied and disabled people. The only opposition has been from disabled rights movements but I would say to them, 'Come and spend a week with me, walk in my shoes'. I've spent 15 years with my daughter, as a mother who loves her dearly I am trying to do the best I can for her."
"I feel the trust misread the so-called lack of support from the minority, groups such as Scope," she continued. "I have not had any contact with any (disability) organization, they do not know me or Katie. They have not provided any support or help for us as a family. I am not surprised by what they said but in the way they said it. They have not been made aware of any of the facts in his case, they made up their mind before hearing the other side of the story, without referring to us. I don't want to take away disabled people's rights, I want to give them choice."
Doctors prescribed contraceptive pills and injections to stop Katie's periods, but Thorpe turned them down because she was afraid Katie might develop thrombosis from them.
The hospital authorities say they cannot justify surgery on the grounds suggested by the mother.
Thorpe, who lives with partner Peter Reynolds, has another daughter, 12-year-old Melissa, who has written to the hospital's non-executive directors in an effort to change their minds out of pity. The 12-year-old's letter recommends surgery once Katie starts her periods.
"It's one of those things, life with a disabled child is one long battle and this is just another step down the ladder," said Thorpe. "It was not unexpected. It means we move to stage two and carrying on fighting."
"An irreversible procedure of this nature that is not clinically necessary is not the right way forward," said Sharon Collins, an executive director at SCOPE, a British organization that works to aid victims of cerebral palsy. "There are so many approaches, this is a completely inappropriate response to the situation. To violate Katie's rights is not the answer."
"Scope does not believe that a child should be modified to fit society but instead that society needs to adapt and become more inclusive of disabled people," said Andy Rickell, another executive director at SCOPE.
"Before we make any decision to operate on a patient we look at each case on an individual basis," said a spokesman for the Mid Essex Hospital Services. "This applies in the case of Katie Thorpe and we have met the family to discuss this. Due to patient confidentiality we are not able to give any more details."
Katie's case is very similar to that of Ashley X, a girl born brain-damaged to parents in the United States. Ashley's parents argued that since she had the mind of a little girl, she should always have a body of a little girl. They used extensive hormone treatment to stunt the 9-year-old's development, and had doctors perform a hysterectomy on her. Doctors also performed a highly controversial procedure to remove her breast buds, a procedure that prompted backlash from disabled-rights organizations who accused the parents of mutilating their daughter for their own convenience.
The UK doctors made the right decision and will not violate the rights of Katie Thorpe who has cerebral palsy. Allison Thorpe, the mother of Katie Thorpe, claims that she wants to give disabled people a choice, but Katie did not choose the operation that her mother Allison wants her to go through. The only thing that Allison may have a point about is that the disability groups should give her and her daughter some assistance in their troubles.
Allison claims that the disability organizations have not heard her side of the issue. I don't think that is necessarily true because they have heard about the "Ashley treatment" and other similar situations in the past. People with disabilities should not be mutilated for parent's or other caretaker's convenience.