DAVID REILLY

A HOSPITAL in Essex will soon know whether it can go ahead with the hysterectomy that Alison Thorpe has requested for her daughter, Katie. Katie is a 15-year-old with cerebral palsy, and her mother has asked doctors to perform the operation to spare her the discomfort of having periods.

Alison Thorpe has argued that Katie would be confused by having periods and that they would cause her indignity. It is reported that doctors are now seeking legal approval to carry out the procedure.

This story is reminiscent of one in the US, where the parents of a child known as Ashley X put their daughter through a series of operations, including a hysterectomy, in order to stunt the child's growth and prevent her developing into an adult.

The parents argued the procedure was in Ashley's best interests because it would be easier to care for her if she remained "small" and would allow her to be taken out and about more easily.

As someone who has cerebral palsy, I find both cases, but in particular that of Katie, most distressing indeed.

Both cases sparked fierce ethical debates about the rights of parents to choose and about the human rights of the two girls involved. In Katie's case, her mother argues that the teenager is not going to get married or have children and that the operation would be in her interests, not her own.

Mrs Thorpe has already refused the option of a "depot" injection, which prevents periods and lasts for three months. She says that Katie would not understand what was happening to her.

The proposal to put Katie through a hysterectomy, which is major surgery, on the basis of the parent's reasoning and not of medical need, deeply disturbs me.

Katie does not have the capacity to consent to such an operation. Her primary carer, who, in this case, is her mother, is making the decision for her. To put a non-consenting individual through such a major, life-changing operation surely calls into question Katie's human rights.

Since it became public that Mrs Thorpe wants to put her daughter through this operation, there has been a wave of responses from all sections of the community, including disability organisations and the parents of disabled children.

There is a broad spectrum of methods people use to approach the whole subject of disability and this has been most apparent in the language that they use. Having read some accounts of other people's experiences, I must say that I often feel uncomfortable with how the needs of disabled people are described.

For example, Lucy Mangan wrote in The Guardian about feeding a young man with cerebral palsy in a public place. She very graphically described the way he had to have his food fed to him.Using phrases such as "spooning gloop into a baby's mouth" or "the way he often pushed food out of his mouth" is, to my mind, some of the most inhumane and degrading language.

What right has anyone to deny a child of his or her natural adulthood with all the ups and downs that brings? In the case of Ashley X, the decision that she should not be allowed to develop into an adult was made for her when she was just six, which is undoubtedly a denial of her basic human rights.

Similarly if the decision is made to put Katie through a hysterectomy, Katie will be denied the right to grow and develop into full adulthood.

If doctors are granted legal permission to go ahead with this operation, what message will it give out about disability and where could such legislation lead us in the future?

For example, it's not so many years ago that people, not dissimilar to myself with any sort of disability, would have been routinely sterilised upon entering care or an institution.

To grant legal permission for this operation to go ahead would be a massive step backwards in terms of disability rights in the UK and would give out completely the wrong message about disability and equality.

It would indeed give the impression that disabled people, of whatever disability, don't have the same natural right to adulthood and all that that brings.

If legal permission for this operation is granted, where might the legislation take us next? For example, in November last year, doctors were reported to be looking for legal permission to be allowed to let babies born with a disability die so that whole families were not affected by disability.

They argued that allowing disabled babies to die would spare a family the stress and financial hardship of bringing up a disabled child.

If legislation is passed that would allow doctors to let babies with a disability die, or let a mother of a young girl take the decision to sterilise her, it could be the start of a road back to some very dark times indeed.

What message does this give out to disabled people in their lives today, and what about the future of the disabled community? Is disability such a burden that is has to be avoided at all costs, even to the extent of allowing disabled babies to die?

If major operations such as the one proposed for Katie are allowed to go ahead without any medical necessity, this then surely gives out the impression that disabled people's lives are of less value or that disabled people have fewer choices or rights than everybody else.

In the UK we pride ourselves at the moment on how much of an inclusive society we have and yet the medical profession is asking to take drastic steps to prevent disabled babies from living, and people are seeking permission at the moment clearly to violate a young person's right to adulthood and all that that brings.

A society as rich and diverse as ours surely has the ability to accommodate and support everyone and not select people on the basis of ability. Society certainly has the resources to support and empower disabled people to live independent lives and to be valued members of our community.

While we claim to be an inclusive society that is meant to embrace diversity, it would seem that we are happy to embrace some forms of diversity such as multiculturalism, but we are less willing to embrace disability rights.