Leslie Swartz

from ABLE-BODIED: Scenes from a Curious Life*

The social model of disability requires us to think contextually and holistically about disability and the social situations in which it is experienced by all of us, and, as I've suggested, this is sometimes easier said than done. But it's a mistake to think that the social model focuses only on barriers to social inclusion. The social model is also about the kinds of situations that make it easier for people to be included in society. In order to discuss this issue, I have no choice but to raise the profound question of what hairdressers think.

One thing I thought I knew for certain growing up was that I would never be bald. My father had a full head of beautiful white hair, and I had a lot of curly and quite unruly hair, perfect for my youth in the 1970s. Sad to relate, I am now bald. Hairdressing issues have become of little relevance to me, but when I did still have hair (and this was not that long ago), I used to have my hair cut by a very strange woman I'll call Crystal. About forty years old, Crystal was sweet and always friendly, but an unnerving feature of having my hair cut by her was that she never seemed to be looking at my head, which was worrying given that she would be wielding a variety of sharp instruments. She was excellent at cutting my bushy hair, but the minute I sat down she would begin to tell me dreamily how she had had visitations from aliens, she had been on extraterrestrial travels, and the world was about to end because of human greed. She heard messages from rocks and sometimes from trees, and the rock energy sometimes controlled her thoughts and actions. All of this was spoken about in a languid manner as she snipped at my hair, and though the hair never seemed to be her focus, my hair was always well cut. One day she showed me what to me looked like a ridiculous book with pictures of people with lines in different colours drawn around them — the lines, she told me, were the auras of the people, and the photographs had been taken by psychic cameras. Quite involuntarily, I chuckled at this, and Crystal became angry with me, but just for a moment, and then she continued with her dreamy monologue. Crystal had recently set up an internet connection at home (she was ahead of me on this one), and she told me how she now had contact with people of similar views and interests in all parts of the world, especially California. These relationships seemed more important to her than any she had locally ' she lived alone, there seemed to be no partner in her life, and she did not go out anywhere, apart from to the supermarket and to work, as far as I could tell.

I have little doubt that if a psychiatrist (or I) were to have sat down with Crystal and put her through a standard diagnostic interview, she would have been diagnosed as psychotic. She heard things others did not hear, felt controlled by forces from the outside, and had beliefs out of keeping with those of her cultural group. There's always some difficulty in psychiatric diagnosis with whether beliefs held by someone which seem strange to the psychiatrist are actually part of the beliefs shared by another culture or subculture. In some groups, for example, it's considered quite crazy to believe that my contracting, say, tuberculosis, is because someone is jealous of me and is bewitching me; in other groups, this is a perfectly reasonable explanation and not at all strange. But there's a difference, a psychiatrist who once taught me used to say, between a subcultural belief and a belief shared by a group of crazy people who seek one another out! Regardless of the beliefs and hallucinations she may have had, Crystal was also quite withdrawn socially. Leaving aside the issue of whether she was technically psychotic or not, Crystal was a person out of step with many of the social roles one would expect from a woman of her age and social background. She reminded me of many people I'd seen in or at the fringes of psychiatric institutions. But as far as I knew, she had never received any treatment for mental disorder, and according to the social model it would be difficult to say she had a psychiatric disability ' she was earning a good living and was well liked, as far as I could see, by clients and colleagues, though socially isolated otherwise. On the other hand, she had quickly made lots of internet friends. More important than anything else, she seemed quite happy and contented ' happier than many people I find much less strange.

Part of why Crystal was so well able to cope despite what for another person might be serious symptoms was that she had her nice, dreamy manner and was pleasant and non-threatening to be with. It's often recommended that people who are a bit strange socially should be in jobs that do not involve too much social interaction, and in fact internet business has been a boon to many people with autism spectrum disorders, for example. But Crystal had chosen a job that involves working with people. When you think about it, though, Crystal's interactions with people, though quite intense, were structured around a specific task – she would begin her monologue as you sat down to have your hair styled and would stop as you left. The social rules of turn-taking in conversation were not really being followed, but because of the situation this was not as much of an issue as it might have been in other contexts. She had also chosen a profession in which there is tolerance for creativity and difference. Among her colleagues, for example, were two men who were both flamboyantly gay. One of the men called himself Alicia and was never seen without his eye make-up. Both these men were, as far as I could judge, single, and both looked older than Crystal. Another colleague was a woman who always dressed in black; she was heavily tattooed and had many piercings. Clients who came to this salon expected eccentricity, accepted it and probably (like me) found it part of the charm of the place.

For some time I would scratch my head wondering how Crystal could manage in the world, and if I am honest I must admit that I still worry that she might be vulnerable to exploitation and hurt by an unscrupulous person. But my overwhelming feeling about Crystal when I think about her now is one of admiration. She was just so clever to find the job she did and to make her niche where she did, to find a virtual social circle on the internet, and to have carved out a way of living happily and productively, if somewhat out of the mainstream. I imagine she was teased and shunned as a child and adolescent, and that there were times she (and her family) worried about how she would make her way in the world. There are so many worse things to do than to be a very good hairstylist, if one with a slightly odd way of dealing with the world. I doubt Crystal will ever be an entrepreneur or own her own hair salon, but there are millions of others who also won't. And she's just a shade away from so many people who can't find and keep work because of their psychiatric problems. Not all of these people are lucky enough to have a talent, and Crystal does have a talent, but I have met many talented people (including talented hairdressers, in fact) who have not been able to manage in the world.

Are there any lessons we can learn from the story of Crystal? I think there are. For behind the story of Crystal and her accomplishments, her ability to find a way in a world not built for her, there must be stories of people who were prepared to look beyond her oddness and to give her a chance to work and interact with people. All too often I hear people saying, 'We can't have disabled people here – it will upset the customers/children/adults/donor funders.' And though it is sometimes true that people will be upset, it's often our own worries, our own sense of upset, that we are responding to. People may be more accepting and more tolerant than we think, and that tolerance comes in part not from themselves but from the cues in the environment. If Crystal's colleagues had nervously apologised for her behaviour and assured me as a customer that I could have another stylist if I so wished, I might have become anxious and worried, and this would have put a barrier between me and Crystal. I was upset to read recently about complaints from some parents regarding a BBC children's television presenter who has one arm.2 I have no doubt some children were indeed frightened when they saw the presenter, that some were worried that she was hurt. Parents of such children had a choice. Some chose to complain and to ask for the presenter to be removed from television; I'm sure there were others who reassured their children and told them about how people's bodies may differ from theirs. And there are also people with minds different from our own. Not all of them are as gentle or as personable as Crystal; not all of them are able to discuss their 'six shock treatments' with the same loud equanimity that my granny did. But there are things we can learn from them, things that can enrich our lives and make us grateful for what they can provide.

*Able-Bodied is pubilshed by Zebra Press (2010). Copies are available by contacting the author at lswartz@sun.ac.za.