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.

As a child, I was very successful in my schoolwork but found it difficult to make friends. I went to Cambridge University but dropped out after a year due to severe depression and spent most of the next year in a therapeutic community, before returning to Cambridge to complete my degree. I first identified myself as autistic in 1999 while I was studying psychology in London but I was not officially diagnosed until 2004 because of a year travelling in Australia and a great deal of NHS bureaucracy. I spent four years working for the BBC as a question writer for the Weakest Link but I am now studying law with the intention of training to be a solicitor. My hobbies include online poker and korfball, and I will be running the London Marathon in 2007. I now have many friends and I am rarely depressed but I remain single.
Grant Shapps on the campaign trail. Photo: Getty
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Grant Shapps resigns over Tory youth wing bullying scandal

The minister, formerly party chairman, has resigned over allegations of bullying and blackmail made against a Tory activist. 

Grant Shapps, who was a key figure in the Tory general election campaign, has resigned following allegations about a bullying scandal among Conservative activists.

Shapps was formerly party chairman, but was demoted to international development minister after May. His formal statement is expected shortly.

The resignation follows lurid claims about bullying and blackmail among Tory activists. One, Mark Clarke, has been accused of putting pressure on a fellow activist who complained about his behaviour to withdraw the allegation. The complainant, Elliot Johnson, later killed himself.

The junior Treasury minister Robert Halfon also revealed that he had an affair with a young activist after being warned that Clarke planned to blackmail him over the relationship. Former Tory chair Sayeedi Warsi says that she was targeted by Clarke on Twitter, where he tried to portray her as an anti-semite. 

Shapps appointed Mark Clarke to run RoadTrip 2015, where young Tory activists toured key marginals on a bus before the general election. 

Today, the Guardian published an emotional interview with the parents of 21-year-old Elliot Johnson, the activist who killed himself, in which they called for Shapps to consider his position. Ray Johnson also spoke to BBC's Newsnight:


The Johnson family claimed that Shapps and co-chair Andrew Feldman had failed to act on complaints made against Clarke. Feldman says he did not hear of the bullying claims until August. 

Asked about the case at a conference in Malta, David Cameron pointedly refused to offer Shapps his full backing, saying a statement would be released. “I think it is important that on the tragic case that took place that the coroner’s inquiry is allowed to proceed properly," he added. “I feel deeply for his parents, It is an appalling loss to suffer and that is why it is so important there is a proper coroner’s inquiry. In terms of what the Conservative party should do, there should be and there is a proper inquiry that asks all the questions as people come forward. That will take place. It is a tragic loss of a talented young life and it is not something any parent should go through and I feel for them deeply.” 

Mark Clarke denies any wrongdoing.

Helen Lewis is deputy editor of the New Statesman. She has presented BBC Radio 4’s Week in Westminster and is a regular panellist on BBC1’s Sunday Politics.