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.
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Brexit confusion is scuppering my show – what next?

My week, from spinning records with Baconface, Brexit block and visiting comedy graves.

I am a stand-up comedian, and I am in the process of previewing a new live show, which I hope to tour until early 2018. It was supposed to be about how the digital, free-market society is reshaping the idea of the individual, but we are in the pre-Brexit events whirlpool, and there has never been a worse time to try to assemble a show that will still mean anything in 18 months’ time.



A joke written six weeks ago about dep­orting eastern Europeans, intended to be an exaggeration for comic effect, suddenly just reads like an Amber Rudd speech – or, as James O’Brien pointed out on LBC, an extract from Mein Kampf.

A rude riff on Sarah Vine and 2 Girls 1 Cup runs aground because there are fewer people now who remember Vine than recall the briefly notorious Brazilian video clip. I realise that something that gets a cheer on a Tuesday in Harrogate, or Glasgow, or Oxford, could get me lynched the next night in Lincoln. Perhaps I’ll go into the fruit-picking business. I hear there’s about to be some vacancies.



I sit and stare at blocks of text, wondering how to knit them into a homogeneous whole. But it’s Sunday afternoon, a time for supervising homework and finding sports kit. My 11-year-old daughter has a school project on the Victorians and she has decided to do it on dead 19th-century comedians, as we had recently been on a Music Hall Guild tour of their graves at the local cemetery. I wonder if, secretly, she wished I would join them.

I have found living with the background noise of this project depressing. The headstones that she photographed show that most of the performers – even the well-known Champagne Charlie – barely made it past 40, while the owners of the halls outlived them. Herbert Campbell’s obelisk is vast and has the word “comedian” written on it in gold leaf, but it’s in the bushes and he is no longer remembered. Neither are many of the acts I loved in the 1980s – Johnny Immaterial, Paul Ramone, the Iceman.



I would have liked to do some more work on the live show but, one Monday a month, I go to the studios of the largely volunteer-run arts radio station Resonance FM in Borough, south London. Each Wednesday night at 11pm, the masked Canadian stand-up comedian Baconface presents selections from his late brother’s collection of 1950s, 1960s and 1970s jazz, psychedelia, folk, blues and experimental music. I go in to help him pre-record the programmes.

Baconface is a fascinating character, whom I first met at the Cantaloupes Comedy Club in Kamloops in British Columbia in 1994. He sees the radio show as an attempt to atone for his part in his brother’s death, which was the result of a prank gone wrong involving nudity and bacon, though he is often unable to conceal his contempt for the music that he is compelled to play.

The show is recorded in a small, hot room and Baconface doesn’t change the bacon that his mask is made of very often, so the experience can be quite claustrophobic. Whenever we lose tapes or the old vinyl is too warped to play, he just sits back and utters his resigned, philosophical catchphrase, “It’s all bacon!” – which I now find myself using, as I watch the news, with ­depressing regularity.



After the kids go to sleep, I sit up alone and finally watch The Lady in the Van. Last year, I walked along the street in Camden where it was being filmed, and Alan Bennett talked to me, which was amazing.

About a month later, on the same street, we saw Jonathan Miller skirting some dog’s mess and he told me and the kids how annoyed it made him. I tried to explain to them afterwards who Jonathan Miller was, but to the five-year-old the satire pioneer will always be the Shouting Dog’s Mess Man.



I have the second of the final three preview shows at the intimate Leicester Square Theatre in London before the new show, Content Provider, does a week in big rooms around the country. Today, I was supposed to do a BBC Radio 3 show about improvised music but both of the kids were off school with a bug and I had to stay home mopping up. In between the vomiting, in the psychic shadow of the improvisers, I had something of a breakthrough. The guitarist Derek Bailey, for example, would embrace his problems and make them part of the performance.



I drank half a bottle of wine before going on stage, to give me the guts to take some risks. It’s not a long-term strategy for creative problem-solving, and that way lies wandering around Southend with a pet chicken. But by binning the words that I’d written and trying to repoint them, in the moment, to be about how the Brexit confusion is blocking my route to the show I wanted to write, I can suddenly see a way forward. The designer is in, with samples of a nice coat that she is making for me, intended to replicate the clothing of the central figure in Caspar David Friedrich’s 1818 German masterpiece Wanderer Above a Sea of Fog.



Richard Branson is on the internet and, just as I’d problem-solved my way around writing about it, he’s suggesting that Brexit might not happen. I drop the kids off and sit in a café reading Alan Moore’s new novel, Jerusalem. I am interviewing him about it for the Guardian in two weeks’ time. It’s 1,174 pages long, but what with the show falling apart I have read only 293 pages. Next week is half-term. I’ll nail it. It’s great, by the way, and seems to be about the small lives of undocumented individuals, buffeted by the random events of their times.

Stewart Lee’s show “Content Provider” will be on in London from 8 November. For more details, visit:

This article first appeared in the 27 October 2016 issue of the New Statesman, American Rage