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.

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5 comments from readers

PaulWady
20 February 2007 at 12:32

Good for you James. Speaking as one of so many Independently Living Autistic Adults, soon to marry another one, you are right.

Thankfully, in the real world the Autsim Speaks people are wasting their time trying to 'cure' people of how they were born. A neurological state of affairs is not usually the result of mercury/vaccine poisoning. We are a Genotype, not a perversion of humanity.

If I got cured, I'd lose my creativity, personality and capacity to love the way I as an individual do.

Consider, what when they can delete the Autsim gene? Whats next - being Gay? How about short? Gingers will be out of course, and people with smelly feet - surely thats a biological fact of life. Somewhere in the midst of all this Neurological-Racial-Purity (Dr Goebells, The Nationalist Socialists of Germany, Eugenicism) humanity is going to get awfully bland...

PAUL WADY.

gcolvin
14 April 2007 at 05:26

To: Paul and James

Congratulations on being able to enjoy a full life while having autism. I admit I don't know all the facts about autism and I certainly don't know how severely you are affected with the disorder, but before you cast aspersions on the people at Autsim Speaks or any other organization you might take a moment to step outside of your own life and take a real look at what other people are going through.

While you may have had an excellent support system of family and friends who helped you learn to deal with your autism, I know three young children who do not. Their mother didn't finish high school, doesn't value education in and of itself and never bothered to make the effort to learn the skills needed to help her autistic children grow up into functioning adults. We have since lost touch with them, but when we last spoke with them Charlie, who was 9 years old at the time, still could not speak more than a few simple words and had not learned to communicate using sign language. His sister, Brittany, had gotten into a special program in her preschool years and could make her desires known through sign language but her mother had not learned to sign and had no desire to do so. Their lives would still be hard because of their mother, but a cure or even a treatment that would help them grow up like other children would remove one burden from a life they didn't ask to be born into.

I don't know where these notions about what the left wants come from, but let me assure you, no one I know wants to wave a "magic wand" and make everyone the same. What we do want is to minimize needless suffering. I'm a type II diabetic and I freely admit that it is my fault and no one else's. Does that mean that I shouldn't want scientists trying to find a way to cure it? No matter what I do to change my diet or lose weight will change the fact that someday I will die from complications of my diabetes, be it heart disease or kidney failure. Before that happens, I may lose a limb or my eyesight and despite the fact that I am overweight and already have a pacemaker, my two favorite hobbies are photography and hiking and one of my dreams is to be able to hike a portion of the Appalachian Trail.

For every person like you who has been able to overcome whatever it is that has been placed in his or her way there are some who cannot. I consider myself a proud liberal and I know we can't "fix" everyone, as you put it, nor do I want to. Want I do want to do is reduce suffering and if cures or treatments could be found that can do just that, isn't it worth the effort?

moggymania
20 May 2007 at 06:32

There's another fundamental problem with th magic wand approach, which is that it blames the person's differences rather than society's attitude towards them. It's not that I can't be cured of who/what I am; it's that it isn't any more of a problem in itself than being a female has been. (Read up on the Social Model of Disability to get a better idea of what I am trying to convey.)

PaulWady: Congratulations on your impending marriage, I hope you have many wonderful years together! I was in a LTR for years with another autie, so I know the big improvement over dating NTs that it can bring. ;)

GColvin:

We have to be careful not to mix up the actual problem with somebody's disability, which I think is what happened in your argument. :) The children's problem isn't that they are autistic, but rather that their mother has problems that lead her to not care for them fully. She would still have problems were the kids NT, and those kids would likely develop depression, substance abuse, or worse as teens/adults as a result. (Most parents of autie kids *don't* treat them the way you describe.)

In a way, as auties the kids are better off with her as a parent than the majority of alternatives. The "interventions" most parents force on their autie kids, such as neuroleptic/antipsychotic drugs or teaching them to hide all signs that they're autistic, do serious long-term harm. Sometimes they even result in death, either directly in childhood or later down the line in adulthood from suicide or substance abuse.

The claim that somebody like this fellow can't really speak for other autistics because he's conventionally successful doesn't work, either. First because only another autie can share our sensory-cognitive-perceptual experience; no non-autie can. :) There are stereotypical autistic people saying exactly the same things, some feeling much more strongly like Ballastexistenz.autistics.org does. The auties I've met that are pro-cure have invariably cited reasons also used by longtime victims of domestic violence to excuse an abuser, which more indicates that what needs to be "cured" is the bigotry of others. ;)

miscellaneous
22 May 2008 at 11:53

Each person in the spectrum is individual so there is no 'off the shelf' outlook. Understanding and tolerating differences is the best way to help improve quality of life. Autism is fundamentally another aspect of the human condition.

Direct communication is often perceived as arrogance, rudeness or trouble causing but neurotypical communication is flawed because 70% of their communication is non-verbal and only 30% of communication is verbal, therfore they are not always concentrating on what is actually being said. Instead they are trying to 'read between the lines.' They draw conclusions from signals and symbolism which don't necessarily mean anything.

Parents and 'Professionals' think that they social skills training helps. However, I believe social skills training are merely a cosmetic effect. They seem to think that if they can control the autistic enough to appear 'normal', then perhaps the autistic life can be improved. These are good intentions but perhaps they are misguided, because there are many different social codes for many different situations. Cultural differences mean social rules differ, so who is to say which social rules are superior to another? Therefore the autistic is actually being set up to fail.

edrebber
22 June 2008 at 03:50

A man’s reach should exceed his grasp. To achieve anything worthwhile, a person should attempt even those things that may turn out to be impossible.

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