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.
Getty
Show Hide image

Anorexia, breast binding and the legitimisation of body hatred

Forcing people to live in a body where they do not feel at home causes intense, often unbearable suffering.

In 1987 I underwent the first of three hospitalisations for anorexia. I was force-fed via a nasogastric tube. This led me to gain a significant amount of weight, which I hated. Furthermore, it made my overall psychological state not better, but worse.

Upon discharge I lost the weight again and in the years that followed I tried to play a game of keeping myself just thin enough to manage my anxiety, not so thin as to be coerced into further treatment. I was not always successful. I used to fantasise about the peace I would experience if only people were to leave me alone. The expectations they had for my life, my body, were not my own.

Decades later I have not come round to other people’s point of view. I still think force-feeding was violent, traumatising, if not downright abusive. I still reject the idea that one might somehow, by sheer force of will, learn to accept a body in which one does not feel at home. The portrayal of anorexia as some invading enemy, or a sly, toxic friend, is one I find wholly ridiculous. There was no battle between the “real” me and a manipulative, alien “Ana”. Every thought I thought, every feeling I felt, was mine.

Should this sound like the start of The Pro-Ana Manifesto, I would like to stress that anorexia robbed me of a great deal. It almost killed me. Perhaps, if I had been “left in peace”, I would not be around to write this today. Yet there was no simple cure, no demon to kill. There was, in the end, no Ana, no skinny mean-girl shadow stalking me, whispering in my ear. There was only me. There was only ever me and a world for which I desperately wanted – and still want – to be the right shape.

In Hunger Strike, Susie Orbach describes how recovery from anorexia is seen by many as having been achieved “when the normal weight is reached and appropriate sex role functioning is achieved”. It is not just a matter of “being healthy” or “looking normal”; gaining body fat means, for a woman, gaining hips and breasts and having to contend with the gendered expectations that accompany this. A female with hips and breasts has a job to do, a role to perform, both sexually and reproductively. I did not want this role. It was easier to change my body than to ask the world to accommodate my humanity.

There is a way in which I understand force-feeding and coercive eating disorder management as a form of conversion therapy, an attempt to impose gender conformity on an unwilling subject. The problem is not the anorexia sufferer’s refusal to eat; she is absolutely correct in assuming that by gaining weight, she will be expected to give up something very personal and meaningful to her. “I have gained weight, but lost myself,” writes Nancy Tucker of her own recovery. “How can I explain that inside I remain an anorexic, but trapped in a fat suit?” How can one be seen as human being while looking like a woman? The anorexic must struggle with this conundrum, at least if she wants to live, but it cannot be hers alone to solve.

I first became ill in 1987, aged 11. I’d been an early developer, already wearing a bra at primary school. I did not want to be that person, the fat girl, the slag, the one who got her breasts groped, her bra snapped, pushed into corners, the one who ended up playing that role anyhow, because it’s less shameful to be a slut in a slut’s body than it is to be a blushing eleven-year-old prude with tits. I tried it for a while, a good eight months, then I gave up and stopped eating. Such a pattern is not uncommon. Eating disorders are more prevalent in those of us who experience an early onset of puberty. I knew, absolutely and without question, that the body I had acquired was not the one I was supposed to have. I wanted to be one of the skinny, straight girls, the ones whose bodies were indistinguishable from those of the boys. Better still, I wanted to be a boy, to never have to gain hips and breasts, or to bleed, again.

Had I been born thirty years later, starvation may not have felt like my only option. By which I do not mean that the situation for pubescent girls has improved. My groping male classmates interpreted female bodies through the lens of Playboy and page three; the harder, faster, crueller world of online porn was yet to come. I mean I could have said I was not a girl. I did not feel like a girl. I was not a girl, not that girl, not that bleeding, stinking body I had become. It would not have been a lie. If I were going through what I went through thirty years ago today, perhaps I would not have needed to flee puberty all alone. I could have asked for help. Instead of having to face down my force-feeding adversaries, I could have found adults willing to support me in my efforts to sculpt a body more in keeping with my sense of self.

For instance, recent advice given to UK schools on how to accommodate the needs of transgender children includes information on chest-binding. According to Cornwall Council, binding can be “hot, uncomfortable and restrictive – but very important to [pupils’] psychological wellbeing”. Teachers are nonetheless told to remain aware of the risk of “breathing difficulties, skeletal problems and fainting”. Lancashire County Council offers the following advice:

“If you have young people who bind their chests, monitor them carefully during physical activities and in hot weather. It may be necessary to subtly offer more breaks.”

I’m perfectly aware that one is not supposed to question guidance of this nature. But I think, just for one moment, we should be honest about what we are witnessing. Young people who hate their breasts, absolutely loathe them, would be willing to take a knife to them and slice them off, would be practically suicidal if someone told them that these breasts were with them for life. Young people who know without doubt that their inner selves, their very identities, are wholly incompatible with the ownership of breasts. Young people who, in other words, feel exactly as I did. And instead of challenging this self-hatred – instead of acknowledging the pain (which no one did for me), but also recognising that it is not caused by the body itself – grown adults are accepting this narrative without question. Because it’s easiest. Because yes, a child still suffers, but the ends (not looking female) are deemed to justify the means (physical pain and possible long-term damage).

Pink News recently described the drawing of comparisons between anorexia and certain narratives of transgender experience as “insulting”. It was not made clear who was being insulted, but I’m guessing it was not anorexia sufferers; after all, they’re the mentally ill ones. While I have no desire to get into a long discussion on the arbitrary nature of definitions of sanity, I think it is perfectly possible to acknowledge the cultural, political and gendered meanings of anorexia without going all-out pro-ana and suggesting it is not an illness at all. It is an illness that operates within particular social settings, in response to and interacting with particular cultural influences. “The world gets harder and harder,” writes Hilary Mantel on self-imposed starvation. “There’s no pleasing it. No wonder some girls want out.”  

The female-to-trans narrative offers a different way of framing the same impossible dilemma. We know that there are countless individuals who have always had this sense of not-belonging. It is now being suggested that contemporary trans politics is granting them to access the language and treatments they have needed all along. But another way of putting it might be that a vocabulary and treatment protocol have been created precisely in order to accommodate rather than challenge the relationship between gender and hatred of one’s own sexed body. What we are seeing remains a symptom, not a cure.

In The Argonauts, Maggie Nelson describes her partner Harry’s experiences of binding:

“Your inability to live in your skin was reaching its peak, your neck and back pulsing with pain all day, all night, from your torso (and hence, your lungs) having been constricted for almost thirty years. You tried to stay wrapped even while sleeping, but by morning the floor was always littered with doctored sports bras, strips of dirty fabric – “smashers” you called them.”

I can easily see myself, aged 14 or 15, reading words like this over and over again, every bit as reverently as I used to read every anorexia memoir I could get my hands on, absorbing every word, feeling ashamed of not being as hardcore, of not having proven myself yet. You still have breasts. You’re not bleeding. Do better. Do more. This is not to question the genuine pain that is being depicted here. At one point Nelson reports her partner’s response to her own lack of comprehension:

“Don’t you get it? you yelled back. I will never feel as free as you do, I will never feel as at home in the world. I will never feel as at home in my own skin. That’s just the way it is, and always will be.”

I don’t know a single long-term anorexia sufferer who has not expressed similar sentiments. And there is no simple response, because it is, in all likelihood, the truth. It is heartbreaking, a tragedy. We can acknowledge the validity of an individual’s suffering without losing sight of the fundamental injustice of it.

It would be wonderful if there were a simple answer to all this. Every day young women are encouraged – berated, almost – to accept their bodies, love their curves, not give a fuck about what men think. It doesn’t work. If it were that easy – if feminism were self-help, little mantras you repeat in your head, one long, extended Dove advert – we’d all be laughing. It’s not. Body positivity messages do not help, even those that do not come with advice on how to get “beautiful underarms” or “age-positive skin”. To really, truly get to the heart of what is wrong with female flesh, why it feels so hateful and alien to so many of us, we need to relate our alienation to the uses and abuses to which this flesh is put. And even then we need to accept that doing so will not necessarily save us as individuals. But the idea that sexed bodies do not match identities due to some innate mismatch – as opposed to the deeply political meanings inscribed upon them – is not just absurd, it is harmful. It leads us to focus only on our bodies and it short-circuits efforts towards long-term political change.

We are reaching a point where even questioning body-hatred is seen as a cruel denial of an individual’s inner self.  I have even seen articles including statements such as “personally, I would feel more empowered in my body […] if I heard that hating your boobs is OK”. How is one supposed to respond to that? ”Well, then, hate away?” Then there is the assumption that women who “consent” to be women – who choose not to bind or change their pronouns – must be so insensitive, so dumb, so politically unengaged as to be pacified by a quick “love your curves” slogan. The truth is that very few female people can accept their bodies as long as ownership of a female body – failure to starve it away, or crush it, or have it surgically corrected – is taken as implicit consent to be treated as a member of the inferior class.

I am not saying “burn your binders”. Forcing people to live in a body where they do not feel at home causes intense, often unbearable suffering. There is no quick fix, perhaps not even a lifetime one. But we need to think hard and keep asking questions, even if these contradict other people’s interpretations of what is possible for them.

We need to accept that an individual’s experience of themselves and their body is an interaction with the world around them. We need to do what we can to create comfort and hope. For women, there is a cost to growing and a cost to staying small. There is pain either way. But please can we keep open the option that it doesn’t have to be like this for all of us, forever? No matter how much it hurts we must at least believe that.  

Glosswitch is a feminist mother of three who works in publishing.