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.
Photo: Getty
Show Hide image

The rise of the green mayor – Sadiq Khan and the politics of clean energy

At an event at Tate Modern, Sadiq Khan pledged to clean up London's act.

On Thursday night, deep in the bowls of Tate Modern’s turbine hall, London Mayor Sadiq Khan renewed his promise to make the capital a world leader in clean energy and air. Yet his focus was as much on people as power plants – in particular, the need for local authorities to lead where central governments will not.

Khan was there to introduce the screening of a new documentary, From the Ashes, about the demise of the American coal industry. As he noted, Britain continues to battle against the legacy of fossil fuels: “In London today we burn very little coal but we are facing new air pollution challenges brought about for different reasons." 

At a time when the world's leaders are struggling to keep international agreements on climate change afloat, what can mayors do? Khan has pledged to buy only hybrid and zero-emissions buses from next year, and is working towards London becoming a zero carbon city.

Khan has, of course, also gained heroic status for being a bête noire of climate-change-denier-in-chief Donald Trump. On the US president's withdrawal from the Paris Agreement, Khan quipped: “If only he had withdrawn from Twitter.” He had more favourable things to say about the former mayor of New York and climate change activist Michael Bloomberg, who Khan said hailed from “the second greatest city in the world.”

Yet behind his humour was a serious point. Local authorities are having to pick up where both countries' central governments are leaving a void – in improving our air and supporting renewable technology and jobs. Most concerning of all, perhaps, is the way that interest groups representing business are slashing away at the regulations which protect public health, and claiming it as a virtue.

In the UK, documents leaked to Greenpeace’s energy desk show that a government-backed initiative considered proposals for reducing EU rules on fire-safety on the very day of the Grenfell Tower fire. The director of this Red Tape Initiative, Nick Tyrone, told the Guardian that these proposals were rejected. Yet government attempts to water down other EU regulations, such as the energy efficiency directive, still stand.

In America, this blame-game is even more highly charged. Republicans have sworn to replace what they describe as Obama’s “war on coal” with a war on regulation. “I am taking historic steps to lift the restrictions on American energy, to reverse government intrusion, and to cancel job-killing regulations,” Trump announced in March. While he has vowed “to promote clean air and clear water,” he has almost simultaneously signed an order to unravel the Clean Water Rule.

This rhetoric is hurting the very people it claims to protect: miners. From the Ashes shows the many ways that the industry harms wider public health, from water contamination, to air pollution. It also makes a strong case that the American coal industry is in terminal decline, regardless of possibile interventions from government or carbon capture.

Charities like Bloomberg can only do so much to pick up the pieces. The foundation, which helped fund the film, now not only helps support job training programs in coal communities after the Trump administration pulled their funding, but in recent weeks it also promised $15m to UN efforts to tackle climate change – again to help cover Trump's withdrawal from Paris Agreement. “I'm a bit worried about how many cards we're going to have to keep adding to the end of the film”, joked Antha Williams, a Bloomberg representative at the screening, with gallows humour.

Hope also lies with local governments and mayors. The publication of the mayor’s own environment strategy is coming “soon”. Speaking in panel discussion after the film, his deputy mayor for environment and energy, Shirley Rodrigues, described the move to a cleaner future as "an inevitable transition".

Confronting the troubled legacies of our fossil fuel past will not be easy. "We have our own experiences here of our coal mining communities being devastated by the closure of their mines," said Khan. But clean air begins with clean politics; maintaining old ways at the price of health is not one any government must pay. 

'From The Ashes' will premiere on National Geograhpic in the United Kingdom at 9pm on Tuesday, June 27th.

India Bourke is an environment writer and editorial assistant at the New Statesman.

0800 7318496