When you are the parent of a severely disabled child you may be under the impression that YOU are the person best qualified to make the decisions regarding their care, well being and future. Well, that’s the way it should be…but it isn’t. Be aware that certain ‘groups’ may decide to have your decisions over-ruled and certain issues regarding your child taken out of your control. Why, and how? All in the name of The Rights of the Disabled.  They exist, as they justly should, but they can be applied by complete strangers to your own situation and prevent you from making decisions regarding your own family member. Just ask Ms Alison Thorpe of Essex in England.

Alison has a fifteen year old daughter, Katie, who is severely affected by cerebral palsy and has been all her young life. She is also brain damaged and cannot communicate; she cannot walk or speak, her hearing is deficient, she is completely incontinent and is very often in alot of pain from her various other ailments. This child is completely and utterly dependant on her mother for everything. Her mother cares for her absolutely on her own – she is not married – she receives very little support from the Govt and says that in 15 years she has never had a full nights sleep. Katie is a round-the-clock committment.  But Katie is at ‘that’ age.

Alison Thorpe knows exactly what her daughter endures every day of her life, constant pain. So faced with the real aspect of Katie beginning puberty very soon she decided to spare her daughter all the extra discomforts, pain and stress of menstruation. She approached her consultant doctors and requested that Katie be given a hysterectomy so that her life is not disrupted any more than need be. The child cannot express when she is in pain so period pain would be an added burden for her, Alison is adamant her daughter will be extremely distressed by the monthly bleeding and it would be just one more indignity for the child to suffer. In short, she wanted her daughter sterilised. Long range contraception is not an option for Katie as there is the very high risk of her suffering thrombosis due to her complete immobility.

Ms Thorpe took her concerns to the doctors feeling confident that they would agree with her, and they did briefly, until third parties stuck their noses into the bargain. The story was made public, Ms Thorpe and her daughter were the subject of media articles and it was not long before certain disabled groups were shouting that Katie Thorpe’s human rights were being violated.  It was not long before the doctors backed down and now they have refused to perform the surgery on Katie. The decision has devastated Alison Thorpe. But she believes the Mid-Essex Hospital Services NHS Trust has been swayed by the outcry from some quarters, including the cerebral palsy charity Scope. Scope fight for the ‘rights’ of the disabled, yes, but what about their well-being and quality of life in cases like this? What about the rights of the caregivers such as Alison Thorpe who only ever have the best interests of their children in mind?

This is young girl who will never marry, never have children yet she will be expected to endure all the problems associated with puberty that able-bodied females often find difficult.

She said: “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’

Third parties such as Scope should butt out of the private business of individuals. People such as Alison Thorpe should be left to make their own decisions along with their doctors.  That, surely, is their right.

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