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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Meet Anne Marie Waters - the Ukip politician too extreme for Nigel Farage

In January 2016, Waters launched Pegida UK with former EDL frontman Steven Yaxley-Lennon (aka Tommy Robinson). 

There are few people in British political life who can be attacked from the left by Nigel Farage. Yet that is where Anne Marie Waters has found herself. And by the end of September she could well be the new leader of Ukip, a party almost synonymous with its beer-swilling, chain-smoking former leader.

Waters’s political journey is a curious one. She started out on the political left, but like Oswald Mosley before her, has since veered dramatically to the right. That, however, is where the similarities end. Waters is Irish, agnostic, a lesbian and a self-proclaimed feminist.

But it is her politics – rather than who she is – that have caused a stir among Ukip’s old guard. Former leader Paul Nuttall has said that her views make him “uncomfortable” while Farage has claimed Ukip is “finished” if, under her leadership, it becomes an anti-Islam party.

In her rhetoric, Waters echoes groups such as the English Defence League (EDL) and Britain First. She has called Islam “evil” and her leadership manifesto claims that the religion has turned Britain into a “fearful and censorious society”. Waters wants the banning of the burqa, the closure of all sharia councils and a temporary freeze on all immigration.

She started life in Dublin before moving to Germany in her teens to work as an au pair. Waters also lived in the Netherlands before returning to Britain to study journalism at Nottingham Trent University, graduating in 2003. She subsequently gained a second degree in law. It was then, she says, that she first learnt about Islam, which she claims treats women “like absolute dirt”. Now 39, Waters is a full-time campaigner who lives in Essex with her two dogs and her partner who is an accountant.

Waters’s first spell of serious activism was with the campaign group One Law for All, a secularist organisation fronted by the Iranian feminist and human rights activist Maryam Namazie. Waters resigned in November 2013 after four years with the organisation. According to Namazie, Waters left due to political disagreements over whether the group should collaborate with members of far-right groups.

In April 2014, Waters founded Sharia Watch UK and, in January 2016, she launched Pegida UK with former EDL frontman Steven Yaxley-Lennon (aka Tommy Robinson). The group was established as a British chapter of the German-based organisation and was set up to counter what it called the “Islamisation of our countries”. By the summer of 2016, it had petered out.

Waters twice stood unsuccessfully to become a Labour parliamentary candidate. Today, she says she could not back Labour due to its “betrayal of women” and “betrayal of the country” over Islam. After joining Ukip in 2014, she first ran for political office in the Lambeth council election, where she finished in ninth place. At the 2015 general election, Waters stood as the party’s candidate in Lewisham East, finishing third with 9.1 per cent of the vote. She was chosen to stand again in the 2016 London Assembly elections but was deselected after her role in Pegida UK became public. Waters was also prevented from standing in Lewisham East at the 2017 general election after Ukip’s then-leader Nuttall publicly intervened.

The current favourite of the 11 candidates standing to succeed Nuttall is deputy leader Peter Whittle, with Waters in second. Some had hoped the party’s top brass would ban her from standing but last week its national executive approved her campaign.

Due to an expected low turnout, the leadership contest is unpredictable. Last November, Nuttall was elected with just 9,622 votes. More than 1,000 new members reportedly joined Ukip in a two-week period earlier this year, prompting fears of far-right entryism.

Mike Hookem MEP has resigned as Ukip’s deputy whip over Waters’ candidacy, saying he would not “turn a blind eye” to extremism. By contrast, chief whip, MEP Stuart Agnew, is a supporter and has likened her to Joan of Arc. Waters is also working closely on her campaign with Jack Buckby, a former BNP activist and one of the few candidates to run against Labour in the by-election for Jo Cox’s former seat of Batley and Spen. Robinson is another backer.

Peculiarly for someone running to be the leader of a party, Waters does not appear to relish public attention. “I’m not a limelight person,” she recently told the Times. “I don’t like being phoned all the time.”

The journalist Jamie Bartlett, who was invited to the initial launch of Pegida UK in Luton in 2015, said of Waters: “She failed to remember the date of the demo. Her head lolled, her words were slurred, and she appeared to almost fall asleep while Tommy [Robinson] was speaking. After 10 minutes it all ground to an uneasy halt.”

In an age when authenticity is everything, it would be a mistake to underestimate yet another unconventional politician. But perhaps British Muslims shouldn’t panic about Anne Marie Waters just yet.

James Bloodworth is editor of Left Foot Forward

This article first appeared in the 17 August 2017 issue of the New Statesman, Trump goes nuclear