Do mummy and daddy know best?

Ashley X, treatment and whether parents always make the right choices for their children

The recent headlines about ‘Ashley X’, the girl who was given hormones to prevent her growth, not to mention a hysterectomy, threw up the usual conflict between the medical establishment and its critics which arises in such cases.

However, I was struck by another opposition it reflected, one that is seldom discussed, and that is the one between disabled people and our parents. By this, I do not mean arguments within the family, although no doubt many took place in every type of household over Christmas, but rather between the distinct lobbying groups which represent each party but have rarely been acknowledged.

Disabled people have generally expressed opposition to the ‘treatment’, which has been condemned by the Disability Rights Commission and the charity, Scope, while there have been many messages of support on the website set up by Ashley’s parents, from people in similar situations.

Such differences of opinion seem obvious and yet are somehow elusive in most of the media reports. This is nothing new. When journalists deign to obtain the views of interest groups at all, they usually fail to specify which particular lobby is being represented. It is probably overly generous to say that they do not consider it important enough to mention. It is rather more likely that they are just unaware of the difference.

There are important consequences. For example, charities such as the National Autistic Society were founded by the parents of disabled children and often continue to reflect the views of these members in their press releases. The imaginative scares about vaccinations originate largely from parents, while most autistic people simply observe from a position somewhere between indifference and incredulity.

Nevertheless, there are also occasions in which the disability rights orthodoxy is overly harsh and the views of parents provide a useful corrective. When Ruth Kelly decided to send her seriously dyslexic son to a public school, rather than a local comprehensive, she could be accused of betraying her party’s principle of integration as well as that of a free state education. On the other hand, there is sometimes a bittersweet necessity to put your own child first and your politics second.

The reaction of David Cameron, whose son has cerebral palsy, was telling. Rather than play party politics, he decided to respect her choice, wisely keeping his own options open for the future. I find myself in the same boat.

As I grow older, fortunately not prevented by oestrogen from doing so, and I start to contemplate the possibility of one day having a family of my own, I gain more sympathy for parents of disabled children and the tough decisions that they face. After all, it is highly probable that my children will inherit some autistic traits and I do not yet want to rule out any possibilities for their education. It is sensible that groups representing disabled people and our parents should try to come to a mutual understanding. We agree on a large number of issues and, even where we do not, it is often assumed we do, so we can only benefit from knowing where the other stands.

But understanding only goes so far. However tough it is to be a carer, and however badly the state has failed to provide adequate support, it can never be justified to employ highly invasive procedures simply to make a child easier to carry. Now that Gordon Brown has revealed that his son has cystic fibrosis, we are soon likely to be in a situation in which the leaders of both main parties have disabled children. Unfortunately, I lack confidence that this will result in policies which will genuinely address the needs of disabled people.