I have just returned from an appointment with my tailor, a sunny man skilled at creating the illusion of symmetry. Although I have never used the services of a tailor before, the prospect of starting a job as a trainee solicitor without the suits which seem a condition of being taken seriously, took me to his door. I have multiple pterygium syndrome, a rare condition caused by a recessive gene. Among its effects are stiff joints and weak muscles. I am also four feet tall, with a curved spine and a clumsy gait. The tailor's workshop, with its rows of shapely mannequins and chic garments waiting for collection, promises a miraculous transformation. But my search is more realistic-for clothes that will fit me, and make me fit.
A specific incident marked the beginning of my consciousness of being disabled. I still remember the shy sense of pleasure and surprise with which I reached the finishing line first at the school sports day, after my teacher had persuaded me to take part in a walking race. A few days later a friend told me that the class had been instructed to let me win.
Before then I don't remember being aware that I was different. Of course I knew that there were things others could do that I could not, and that I was more physically vulnerable than my class fellows in the playground. But I had never before experienced the fear that I, like my sporting victory, was a sham. Being witnessed so publicly enjoying a success which everyone but me could see was undeserved, made me doubt my judgement entirely.
When I crossed that finishing line, I crossed another frontier, into a life where my disability and my sense of self were at war. The strategy I employed to subdue the power of the disability was to deny its existence. If I could make the disability unreal to me, I could, perhaps, by that effort of will, reduce its vividness for others. To allow myself to experience fully any aspect of my life as a disabled person would threaten my ability to carry off this vanishing trick; consequently, any feelings of loss or frustration must be suppressed.
Every day became an exercise in bracing myself against intrusions on this manufactured equilibrium. Potential disturbances might come from any direction. Most pervasively, I felt a discomfort at being inside my body; embarrassment at my physical awkwardness and the fact that I didn't measure up. But the most potent source of danger was other people, or more particularly, what they might think. A remark which showed that my disability was part of their apprehension of me could cut to the quick because it seemed to go to the heart of my survival. (I remember, for instance, being in a car with a friend and her family, looking for a place to park. Her brother suddenly said: "Emma, don't you have a handicapped parking badge?" I felt as if I had been punched, as if the word "handicapped" was itself a badge, a mark of otherness and shame.)
To be physically remarkable is to be a frequent object of others' surprise, interest, and assumptions. But more than the occasional pointing finger or tactless word, it is the not knowing which is unnerving. To know that I make an impression on anyone who sees me, and yet (thanks to the conventions of politeness), do not know what impression, is unsettling. Am I just mildly odd and worth only a moment's extra appraisal? Or am I a freak-tolerated and capable of commanding affection, but a freak all the same?
In the absence of a definitive answer, I have always felt it safest to imagine the worst. I have tried to avoid being taken by surprise, as when an unexpected mirror reveals a quite different image from the one in the mind's eye. Of course, unease at the inevitable gap between your sense of self and the person you are in the eyes of others, is by no means the prerogative of disabled people. Almost all of us have, at one time or another, experienced some anxiety about how we are reflected in the pool of others' perceptions, and how much distortion we suffer in that translation. But to be markedly and visibly different from the norm, in whatever respect, makes it harder to resist the impulse to do other people's thinking for them.
While the self-consciousness I experience is exacerbated by my own unhelpful assumptions about others, there is an objective element, too. The predominant form in which I experience being disabled is in being "done to," in more or less subtle ways. More significant than the experience of orthopaedic surgery to correct the body is the psychological effect of being made a screen for the projection of other people's fantasies.
For instance, there was the woman who suddenly appeared from the other side of a clothes rack in an up-market shop, to press a ?10 note into my mother's hand. "Please buy her something nice for Christmas," she said, "it would make me feel so much better." Why? I can only think that the sight of me represented for her a cameo of suffering which she could not bear. By giving the money she could release herself from the burden of her empathy by feeling she had done her bit. Or perhaps my imagined misery echoed some unhappiness of her own which she could, at least temporarily, expel by attributing it to me; the gift cementing the distance between giver and recipient. The fact that she did not give the money to me, nor address me directly, completed the sense of having been bypassed, as if I was only there as a symbol of affliction.
At the other end of the scale were the girls at school who liked to tell me how lucky I was. At the age of 16, I was given a car and was independently mobile for the first time. They were right; I was much luckier than a person in my position who did not have a car. But the sting of their remarks was the suggestion that I had profited from an unfair advantage whose benefit they had been denied.
I also remember an exchange in a caf? when I was much younger. My mother and I were chatting when a woman at an adjacent table leant over and, beaming, said to me "Isn't Mummy wonderful." Well, yes, she is, I felt like saying, but how do you know? By imputing to me a blissful life in the care of a mother up for canonisation, perhaps she protected herself from some kind of unease. Those who insist, even with the slimmest evidence, on finding in disabled people examples of extraordinary courage or cheerfulness, effect the same psychological manoeuvre. Rather than risk being overwhelmed by another's bad luck and by the knowledge that misfortune is indiscriminate, they impute to the disabled person qualities which more than compensate for the deficiencies, so that, on balance, nothing is lost.
There are, of course, less dramatic encounters which reinforce the sense that disability eclipses the person. I, like many other disabled people, commonly find that a question I have asked is answered to a third person, or I am asked a question indirectly-the "does he take sugar?" phenomenon.
The question of a disabled identity, then, becomes partly a question of how to rescue a subjectivity-free from the onslaught of other people-within whose compass the fact of disability none the less has its place. Disability activist groups have created a political identity by reclaiming the prejudices associated with disability and turning them on their head. But my question is more: how to think of oneself as disabled? If I give up disputing the obvious and fully acknowledge my physical difference, will I be buried alive in a box labelled "invalid?"
I have tried simply not to care what others think. But, of course this is futile. We all rely on social relationships; some attendant worry about how we are perceived is inescapable. My goal now is a kind of engaged detachment. Accepting the unhelpful responses evoked in some by the presence of disability, and yet not taking them too much to heart, may create a space in which my own self, sustained by those who know it truly, has sufficient freedom to forge an autonomous identity.
I heard it said once that the world can be divided into those who wear their bodies and those who drag their bodies around with them. The idea that the achievement of a greater integration between body and mind may simply require daring fully to inhabit my own skin, is liberating. I can begin to imagine walking, if not tall, then at least with new self-possession. True, I am still looking forward to collecting my finished clothes with a somewhat disproportionate feeling of anticipation, as if they could make a more than superficial difference. But a body one feels at ease in is, of course, beyond the remit of any tailor. For the stitching together of a fitting and well-proportioned attitude to living with disability, you must be your own, psychological, seamstress. n
