Why I Don’t Want to be Cured

Tempted to wave the magic wand and cure my disability? Well, maybe for a day.

Among the things that non-disabled people find the most difficult to understand are those campaigners who say that they do not want to be cured of their impairments. If anything, this claim is hardest to stomach for people on the political left, wedded as they often are to notions of public healthcare, scientific progress and psychological malleability.

We are often accused of being in denial. Surely, we are asked, if someone could wave a magic wand and all physical or mental quirks could be excised, anyone would be foolish not to take the opportunity. It is true that there are certainly days when I feel like that, but these are my bad days, when I would not regard myself as making my best decisions. The rest of the time, I accept who I am, because I have self-respect and, anyway, I have no choice.

This is the fundamental problem with the ‘magic wand’ approach. It creates a possibility that does not exist and is therefore rather meaningless, rather like wondering whether you would want to live for ever. Unfortunately, unlike in the search for eternal life, when it comes to ridding the world of disability, there is rather less scepticism about finding the philosopher’s stone.

In most cases, there is and is never likely to be a magic wand, a cure that is cheap, free of risk and, most importantly, genuinely works. In the case of autism, which is my impairment, there is not a single treatment that has withstood the rigours of scientific scrutiny and yet the quacks continue to peddle their wares, selling false hopes at the expense of self-acceptance. All doubt fades, so desperate are people for us to be gone.

Even when so-called ‘cures’ exist, they can be partial in their effects, resulting in highly ambivalent consequences. For example, cochlear implants do not allow profoundly deaf people to hear perfectly or to speak like everyone else. As a result, many who choose this option feel no less isolated from the hearing world than previously and yet may create distance between themselves and other deaf people, who use less integrationist solutions such as sign language.

Similarly, those who are treated for facial disfigurements rarely end up looking like Joe Average but rather like people who have had bad plastic surgery, perhaps not surprisingly because that is often exactly the case. Of course, there is always a small risk of death or serious injury in any such surgery but, in the case of conjoined twins, an operation to separate them can frequently be fatal. Nevertheless, this fact does not prevent commentators from assuming that it must always be the necessary approach.

For the last century and a half, a central feature of the history of medicine has been its unremitting optimism about its ability to solve social problems, buoyed by the undoubted success of the germ theory of disease. However, no recent innovation can compare with the elimination of smallpox and the relative control of cholera and tuberculosis. Indeed, the greatest discoveries, such as the role of insulin in diabetes, have allowed people with impairments to live longer, when before they would have perished.

Medicine, whether with stem cells, genetic engineering, or psychotherapy, is not going to make us go away and is a distraction from the vital task of finding social and political solutions, based upon rights and access to jobs and services. But if there really was a magic wand, I know what I would do. I would cure myself for one day, just to see what it was like to be normal, knowing that I could use the same magic wand to return myself to the real me afterwards.

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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In focusing on the famous few, we risk doing a disservice to all victims of child sexual abuse

There is a danger that we make it harder, not easier, for victims to come forward in future. 

Back in the 1970s when relations between journalists and police were somewhat different to today a simple ritual would be carried out around the country at various times throughout the week.

Reporters, eager for information for their regional newspaper, would take a trip to the local station and there would be met by a desk sergeant who would helpfully skim through details in the crime Incident Book.

Among the entries about petty thefts, burglaries and road accidents there would occasionally be a reference to an allegation of incest. And at this point the sergeant and journalist might well screw-up their faces, shake their heads and swiftly move on to the next log. The subject was basically taboo, seen as something ‘a bit mucky,’ not what was wanted in a family newspaper.

And that’s really the way things stayed until 1986 when ChildLine was set up by Dame Esther Rantzen in the wake of a BBC programme about child abuse. For the first time children felt able to speak out about being sexually assaulted by the very adults whose role in life was to protect them.

And for the first time the picture became clear about what incest really meant in many cases. It wasn’t simply a low level crime to be swept under the carpet in case it scratched people’s sensitivities. It frequently involved children being abused by members of their close family, repeatedly, over many years.

Slowly but surely as the years rolled on the NSPCC continued to press the message about the prevalence of child sexual abuse, while encouraging victims to come forward. During this time the corrosive effects of this most insidious crime have been painfully detailed by many of those whose lives have been derailed by it. And of course the details of the hundreds of opportunistic sexual assaults committed by Jimmy Savile have been indelibly branded onto the nation’s consciousness.

It’s been a long road - particularly for those who were raped or otherwise abused as children and are now well into their later years - to bring society around to accepting that this is not to be treated as a dark secret that we really don’t want to expose to daylight. Many of those who called our helpline during the early days of the Savile investigation had never told anyone about the traumatic events of their childhoods despite the fact they had reached retirement age.

So, having buried the taboo, we seem to be in danger of giving it the kiss of life with the way some cases of alleged abuse are now being perceived.

It’s quite right that all claims of sexual assault should be investigated, tested and, where there is a case, pursued through the judicial system. No one is above the law, whether a ‘celebrity’ or a lord.

But we seem to have lost a sense of perspective when it comes to these crimes with vast resources being allocated to a handful of cases while many thousands of reported incidents are virtually on hold.

The police should never have to apologise for investigating crimes and following leads. However, if allegations are false or cannot be substantiated they should say so. This would be a strength not a weakness.

It is, of course, difficult that in many of the high-profile cases of recent times the identities of those under investigation have not been officially released by the police but have come to light through other means. Yet we have to deal with the world as it is not as we wish it would be and once names are common knowledge the results of the investigations centring on them should be made public.

When it emerges that someone in the public eye is being investigated for non-recent child abuse it obviously stirs the interest of the media whose appetite can be insatiable. This puts pressure on the police who don’t want to repeat the mistakes of the past by allowing offenders to slip through their hands.  And so there is a danger, as has been seen in recent cases, that officers lack confidence in declaring there is a lack of evidence or the allegations are not true. 

The disproportionate weight of media attention given to say, Sir Edward Heath, as opposed to the Bradford grooming gang sentenced this week, shows there is a danger the pendulum is swinging too far the other way. This threatens the painstaking work invested in ensuring the public and our institutions recognise child abuse as a very real danger. 

Whilst high profile cases have helped the cause there is now a real risk that the all-encompassing focus on them does both victims of abuse and those advocating on their behalf a fundamental disservice.

As the public watches high -profile cases collapsing amidst a media fanfare genuine convictions made across the country week in week out go virtually unannounced. If this trend continues they may start to believe that child sexual abuse isn’t the prolific problem we know it to be.

So, while detectives peer into the mists of time, searching for long lost clues, we have to face the unpalatable possibility that offences being committed today will in turn only be investigated fully in years or decades' time because there is not the manpower to deal with them right now.

So, now the Goddard Inquiry is in full swing, taking evidence about allegations of child sex crimes involving ‘well known people’ as well as institutional abuse, how do we ensure we don’t fail today’s victims?

If they start to think their stories are going to be diminished by the continuing furore over how some senior public figures have been treated by the police they will stay silent. Therefore we have to continue to encourage them to come forward, to give them the confidence of knowing they will be listened to.

If we don’t we will find ourselves back in those incestuous days where people conspired to say and do nothing to prevent child abuse.

Peter Wanless is Chief Executive of the NSPCC.