Ways of seeing
I've been thinking about seeing, and how people with disabilities are part of the social construct of looking and being looked at.
Children look at things and people with unmalicious curiosity, before they're taught by adults not to stare. I think that not staring is primarily about maintaining boundaries and privacy (eye contact is usually taboo on public transport, where you may be pressed so closely to strangers that you can feel the contents of their pockets), but staring is also about wanting to look at something unusual in order to understand it. We don't give real training in how to look at something we find unusual or threatening, and are left with the options of staring invasively or refusing to look. Many people find it difficult to maintain normal eye contact with someone disabled, and most will take avoidance over staring, since they've been taught that staring is rude but not that refusing to look is also rude. From the receiving end, it feels like being pointedly shunned. You're rendered invisible, but it's not the liberating type of visibility which gives you the freedom to do whatever you want, because the second you put a toe out of line you will be under the spotlight. People talk about visible and invisible disabilities, as if the marker of how a disability is judged is how it is seen by passers-by. You may wonder at my use of the term "judged", but people with disabilities are judged all the time to see if they're worthy of state support (whether or not they actually receive such support), a situation not helped by the media's constant baying about benefits scroungers.
Some people, the ones I think of as the rudest, will discard social training about manners and treat people with disabilities as if they have lost their entitlement to privacy, or even as if they are not real people. Staring goes along with behaviours such as coming up and saying, "So what's wrong with you?" to a stranger, or offering unsolicited advice, or talking to the disabled person's companion instead of them, the "does she take sugar?" syndrome. More people hastily avert their eyes. They do so literally, like a toddler who thinks that if they don't look at something, they won't be seen by it and are safe from interacting with it.
Disabled people simply don't get looked at in the usual way, which lessens normal social interaction. It also means that we are excluded from the category of things which can be looked at, things which provide pleasure to the viewer. Perhaps this is why people get absolutely flustered by the sight of someone disabled who doesn't fit into this category sexually. We classify the elderly as asexual and outside the "pleasant to look at" category. Mobility aids are associated with the elderly - indeed, disability is often exclusively associated with the elderly, to the point where a great deal of preferential treatment that should apply to both gets applied to the elderly only, and young disabled people are routinely hassled for using the "elderly/disabled" seats on the bus. If you're not elderly but you are using a mobility aid, this flummoxes people. There appears to be an automatic tendency to try to lump you in with the elderly, and of course you don't fit. Some people appear to be proceeding along the lines that mobility aid = must be elderly = you're not elderly, therefore you're a fraud.
When I was well enough to use buses, I was hassled about being disabled about 50% of the time. The most striking incident was one day when I was sitting, as usual, in the elderly/disabled seats, on the window side. My walking stick was hooked over the rail in front of me, and a little old lady was sitting next to me. When she got off the bus, a man suddenly grabbed my walking stick and leapt off the bus to give it to her. I called out rather sharply, since I was startled and didn't want to lose my stick, but still perfectly politely, "Hey, that's my walking stick!" The man turned round and delivered a volley of abuse to me. Now, I can understand that an elderly woman is more likely to be the owner of a walking stick than a woman in her twenties, but the easiest solution would have been to ask, "Is this yours?" rather than appropriating it, and there was no need for the extraordinary level of hostility he displayed. He made it very clear that by rights, the walking stick should have belonged to the old woman rather than to me.
If you're doing anything other than blending with asexual decorum into the background, you disturb people's vision of what you ought to be. I read a forum post once by a young woman who'd been deliberately blanked by two girls who knew her from school when she was out with a brightly decorated walking stick, and who was terribly upset as a result. An astonishing number of people said, "Well, maybe they weren't comfortable with the design on the walking stick," as if that gave those two girls the right to behave with exceptional rudeness. What is so upsetting about a piece of wood which has been painted with a simple flame design?
I think it was because it didn't just diverge from the norm (grey and boring, please), it was actively lively and celebratory, and it was fun. Disability isn't allowed to be fun. I have an elegant wooden walking stick myself, which really increased my self-esteem after those horrible aluminium-and-plastic hospital jobs that make you feel like you're eighty-three in the shade. I probably wouldn't have gone for a bright and cheerful one if I'd been able to find one (the most exciting ones I'd seen were in floral patterns aimed at old ladies), unless it was cheap enough that I could have it as a spare, partly because no one colour is going to match all of my wardrobe or moods, and partly because I'd be afraid to stand out that much. You have to be terribly careful how you present yourself.
Showing any signs of sexuality together with disability really upsets people. If you think you get dirty looks walking down the street holding hands with a same-sex lover, try walking down the street looking equally couply with a walking stick added, even in a mixed-sex couple. Wear sexy clothing and you will be glared at in disgust. It's rare for the disgust to be so strong that you can see the person thinking, "Good God, I hope they're not planning to breed," but it's common for the glare to suggest that by wearing a strappy top in the summer, you are behaving completely inappropriately. Nobody wolf-whistles a woman in a wheelchair. It would be considered obscene.
One of the reasons why I'm still shy of going out in my wheelchair, apart from the obvious ways in which it's physically disempowering and people suddenly treat you like dirt, is because my first experience was so distressing. A friend was pushing me around Tesco and I was getting used to not being able to reach things and being jolted and having to ask for help with absolutely everything, which on its own is quite enough. We were at one end of an aisle when we saw a man I knew from the university Jewish society. Now, this was one of the men who felt that it was his life's duty to live up to the time-honoured pun on lecturer/lecher. He was a sleaze. He'd been ogling me and making suggestive comments every previous time he encountered me, and a flatmate who'd run into him had commented meditatively, "You can tell he's the sort of man who's thinking about his penis all the time." At last I was to discover how to stop him doing this. He saw me at the other end of the aisle, recognised me, put down his shopping basket, and bolted out of the store. I found out that yes, there is something worse than being sexually objectified.
Women grow up with being sexually objectified by men. We all have to learn how to deal with it and come to terms with it in our individual ways. Like many women, I've found a middle ground. Random leching or having someone talk to my breasts instead of my face is unpleasant, but mildly appreciative, unthreatening glances are rather nice. I like to wear tops that are low-cut but still well within the bounds of decency, and I always liked the response given by Julia Roberts' character in Erin Brockovich when, on being taken to task by the women in her office for wearing revealing tops, she said simply, "Well, I think I look nice." I got along fine for years, and then I started using mobility aids and my neat little social system of eye contact cracked. It's not only how I am looked at that is askew now, it's how I look at other people, because that is dependent on how they are looking at and treating me. I suspect that a lot of people with disabilities will end up looking down because they're afraid to look up and meet hostility or invasive pity in someone's eyes, and when I'm stressed and tired I can default to this myself.
Something odd I've noticed is that when people with disabilities are photographed for media articles or leaflets put out by disability organisations, they almost always pick people with disabilities which are considered, for want of a better word, unattractive. At worst, they will look helpless, unaware of their surroundings, poorly dressed, mouths open, eyes vacant, to the point where looking at the photographs can feel creepily like joining in an act of exploitation. It's been suggested to me that this is done in the spirit of inclusiveness, so that people who don't look like magazine models can feel that they're being represented. I don't know whether the people in those photographs feel that they're being shown fairly, but it sure as hell doesn't make me feel like I'm being represented. In fact it makes me feel further marginalised, that my disability is not worthy of being included because it is not visible enough, and that I should fit into a certain model if I want to get any help - because being the passive recipient of other people's aid is how we are invariably portrayed in these photographs. They're about the disability, not the person. If I were to choose something to represent what I am, it wouldn't be my wheelchair or walking stick, it would be my quilts, beauty and creativity and vivid colour, or the walls of books I've been collecting since childhood that are a huge part of who I am and how I got here. Going back to photographs of people, I think it's about time we saw people with disabilities who look appealing (while still looking human rather than airbrushed to death): smart, sexy, in control of their lives, interesting, vibrant, sophisticated. Right now I think the mere notion is taboo, sadly.
Vision is often used as a metaphor in literature, but it's used far more as a metaphor than as a real description. King Lear isn't about disability for all its grand theme of blindness, it's about power and cruelty and relationships. Saramago's harrowing novel Blindness, which shows a society suddenly deprived of sight descending into filth and violence, has been criticised for being just a metaphor and a negative one at that, a way of looking at the worst side of a sighted society which is uninterested in the realities of life without sight. John Wyndham wrote another, and probably better-known, novel about what might happen if one day almost everyone woke up blind, The Day of the Triffids. He's more concerned with social breakdown and attempted recovery, and of course there are the famous man-eating plants, but you can still sum it up with, "In the country of the blind, the one-eyed man is king," a proverb which has nothing to do with actual blindness. The novel contains at least two appalling accounts of people waking up blind and deciding that suicide is the only reasonable option, in one case a woman who kills her children along with herself.
It always seems to be about tragedy. Following the classical definition, tragedy is meant to evoke pity and terror. Disability evokes pity and hatred, the hatred probably stemming from fear. (Not that I think the fear lets people off the hook, I've always been uneasy with the suffix "-phobia" being used for types of hatred, as it turns the perpetrator into a victim.) And again we have the notion of display. Tragedy is something acted on a stage, to be looked at and learned from and used for the viewer's personal satisfaction. No wonder I bridle when someone learning about my disability describes it as "tragic".
I don't want to end this article on such a grim note. Yes, this stuff is depressing, often plain shitty, and I will sometimes have a good rant about it, but it's not my entire life. Let's go back to quilting, something I only came to after years of illness, after most of my other usual pastimes had become impossible. It is not only a source of pure joy for me, but a completely unexpected one. From early childhood until I fell ill at 19, I was a keen and extremely busy musician. It was a huge part of my identity, both personally and socially, and as a result it never even occurred to me that I have rather a good visual sense until someone assessing my cognitive impairments for university casually pointed out that I'm a visual thinker. Ten years into the ME, I was pretty severely disabled. I was mostly housebound, the music had fallen by the wayside years earlier, my eyes couldn't follow standard-sized print any more nor my hands control a pen for long enough to write more than a very wobbly shopping list, but elfbystarlight had been telling me about quilting and I decided to buy a few pieces of fabric and give it a try.
To my delight, hand-sewing requires little muscular strength and it's a different type of visual focus from reading, so that as long as I pace myself reasonably, I can get a surprising amount of sewing done. Some quilting can even be done curled up in bed! I listen to audiobooks while I sew, and again that's a situation where I thought I'd lost something but found that I'd gained as well. Yes, they're slower and there's less choice, but the RNIB library has thousands of titles, more than enough to keep me busy for years and years, and I can listen to any of its books at a moment's notice without having to go out and buy it. Listening to a book read aloud makes it something quite different, the characters take on new life and you find things you'd never noticed before even in a book you may have read ten times. I find that I gain extraordinary pleasure from gazing at colours, studying patterns, and feeling the fabric in my hands, not to mention the excitement of creation. I wish I'd continued art at school past the age of fourteen, I don't know the first thing about it and can't draw for toffee, but it turns out that you can get away with murder in this respect, between copying and adapting pictures found on Google Image and finding beautiful fabrics that do half the work for you. Ironically, while I never learnt to draw and thus am having to learn how to look at things almost from scratch, I spent quite a bit of time at university studying concepts of seeing from the literary and psychological points of view, Bulger and Mulvey and the discovery that if you talk to a layperson about the "male gaze", they almost invariably mishear it as the "male gays".
It's a different visual world I live in now, and in many ways a lovelier one. And now, if you'll excuse me, I have the last two hours of a Pratchett audiobook to polish off while selecting and cutting fabric for an exciting new quilt I'm working on. It's my own design.
Children look at things and people with unmalicious curiosity, before they're taught by adults not to stare. I think that not staring is primarily about maintaining boundaries and privacy (eye contact is usually taboo on public transport, where you may be pressed so closely to strangers that you can feel the contents of their pockets), but staring is also about wanting to look at something unusual in order to understand it. We don't give real training in how to look at something we find unusual or threatening, and are left with the options of staring invasively or refusing to look. Many people find it difficult to maintain normal eye contact with someone disabled, and most will take avoidance over staring, since they've been taught that staring is rude but not that refusing to look is also rude. From the receiving end, it feels like being pointedly shunned. You're rendered invisible, but it's not the liberating type of visibility which gives you the freedom to do whatever you want, because the second you put a toe out of line you will be under the spotlight. People talk about visible and invisible disabilities, as if the marker of how a disability is judged is how it is seen by passers-by. You may wonder at my use of the term "judged", but people with disabilities are judged all the time to see if they're worthy of state support (whether or not they actually receive such support), a situation not helped by the media's constant baying about benefits scroungers.
Some people, the ones I think of as the rudest, will discard social training about manners and treat people with disabilities as if they have lost their entitlement to privacy, or even as if they are not real people. Staring goes along with behaviours such as coming up and saying, "So what's wrong with you?" to a stranger, or offering unsolicited advice, or talking to the disabled person's companion instead of them, the "does she take sugar?" syndrome. More people hastily avert their eyes. They do so literally, like a toddler who thinks that if they don't look at something, they won't be seen by it and are safe from interacting with it.
Disabled people simply don't get looked at in the usual way, which lessens normal social interaction. It also means that we are excluded from the category of things which can be looked at, things which provide pleasure to the viewer. Perhaps this is why people get absolutely flustered by the sight of someone disabled who doesn't fit into this category sexually. We classify the elderly as asexual and outside the "pleasant to look at" category. Mobility aids are associated with the elderly - indeed, disability is often exclusively associated with the elderly, to the point where a great deal of preferential treatment that should apply to both gets applied to the elderly only, and young disabled people are routinely hassled for using the "elderly/disabled" seats on the bus. If you're not elderly but you are using a mobility aid, this flummoxes people. There appears to be an automatic tendency to try to lump you in with the elderly, and of course you don't fit. Some people appear to be proceeding along the lines that mobility aid = must be elderly = you're not elderly, therefore you're a fraud.
When I was well enough to use buses, I was hassled about being disabled about 50% of the time. The most striking incident was one day when I was sitting, as usual, in the elderly/disabled seats, on the window side. My walking stick was hooked over the rail in front of me, and a little old lady was sitting next to me. When she got off the bus, a man suddenly grabbed my walking stick and leapt off the bus to give it to her. I called out rather sharply, since I was startled and didn't want to lose my stick, but still perfectly politely, "Hey, that's my walking stick!" The man turned round and delivered a volley of abuse to me. Now, I can understand that an elderly woman is more likely to be the owner of a walking stick than a woman in her twenties, but the easiest solution would have been to ask, "Is this yours?" rather than appropriating it, and there was no need for the extraordinary level of hostility he displayed. He made it very clear that by rights, the walking stick should have belonged to the old woman rather than to me.
If you're doing anything other than blending with asexual decorum into the background, you disturb people's vision of what you ought to be. I read a forum post once by a young woman who'd been deliberately blanked by two girls who knew her from school when she was out with a brightly decorated walking stick, and who was terribly upset as a result. An astonishing number of people said, "Well, maybe they weren't comfortable with the design on the walking stick," as if that gave those two girls the right to behave with exceptional rudeness. What is so upsetting about a piece of wood which has been painted with a simple flame design?
I think it was because it didn't just diverge from the norm (grey and boring, please), it was actively lively and celebratory, and it was fun. Disability isn't allowed to be fun. I have an elegant wooden walking stick myself, which really increased my self-esteem after those horrible aluminium-and-plastic hospital jobs that make you feel like you're eighty-three in the shade. I probably wouldn't have gone for a bright and cheerful one if I'd been able to find one (the most exciting ones I'd seen were in floral patterns aimed at old ladies), unless it was cheap enough that I could have it as a spare, partly because no one colour is going to match all of my wardrobe or moods, and partly because I'd be afraid to stand out that much. You have to be terribly careful how you present yourself.
Showing any signs of sexuality together with disability really upsets people. If you think you get dirty looks walking down the street holding hands with a same-sex lover, try walking down the street looking equally couply with a walking stick added, even in a mixed-sex couple. Wear sexy clothing and you will be glared at in disgust. It's rare for the disgust to be so strong that you can see the person thinking, "Good God, I hope they're not planning to breed," but it's common for the glare to suggest that by wearing a strappy top in the summer, you are behaving completely inappropriately. Nobody wolf-whistles a woman in a wheelchair. It would be considered obscene.
One of the reasons why I'm still shy of going out in my wheelchair, apart from the obvious ways in which it's physically disempowering and people suddenly treat you like dirt, is because my first experience was so distressing. A friend was pushing me around Tesco and I was getting used to not being able to reach things and being jolted and having to ask for help with absolutely everything, which on its own is quite enough. We were at one end of an aisle when we saw a man I knew from the university Jewish society. Now, this was one of the men who felt that it was his life's duty to live up to the time-honoured pun on lecturer/lecher. He was a sleaze. He'd been ogling me and making suggestive comments every previous time he encountered me, and a flatmate who'd run into him had commented meditatively, "You can tell he's the sort of man who's thinking about his penis all the time." At last I was to discover how to stop him doing this. He saw me at the other end of the aisle, recognised me, put down his shopping basket, and bolted out of the store. I found out that yes, there is something worse than being sexually objectified.
Women grow up with being sexually objectified by men. We all have to learn how to deal with it and come to terms with it in our individual ways. Like many women, I've found a middle ground. Random leching or having someone talk to my breasts instead of my face is unpleasant, but mildly appreciative, unthreatening glances are rather nice. I like to wear tops that are low-cut but still well within the bounds of decency, and I always liked the response given by Julia Roberts' character in Erin Brockovich when, on being taken to task by the women in her office for wearing revealing tops, she said simply, "Well, I think I look nice." I got along fine for years, and then I started using mobility aids and my neat little social system of eye contact cracked. It's not only how I am looked at that is askew now, it's how I look at other people, because that is dependent on how they are looking at and treating me. I suspect that a lot of people with disabilities will end up looking down because they're afraid to look up and meet hostility or invasive pity in someone's eyes, and when I'm stressed and tired I can default to this myself.
Something odd I've noticed is that when people with disabilities are photographed for media articles or leaflets put out by disability organisations, they almost always pick people with disabilities which are considered, for want of a better word, unattractive. At worst, they will look helpless, unaware of their surroundings, poorly dressed, mouths open, eyes vacant, to the point where looking at the photographs can feel creepily like joining in an act of exploitation. It's been suggested to me that this is done in the spirit of inclusiveness, so that people who don't look like magazine models can feel that they're being represented. I don't know whether the people in those photographs feel that they're being shown fairly, but it sure as hell doesn't make me feel like I'm being represented. In fact it makes me feel further marginalised, that my disability is not worthy of being included because it is not visible enough, and that I should fit into a certain model if I want to get any help - because being the passive recipient of other people's aid is how we are invariably portrayed in these photographs. They're about the disability, not the person. If I were to choose something to represent what I am, it wouldn't be my wheelchair or walking stick, it would be my quilts, beauty and creativity and vivid colour, or the walls of books I've been collecting since childhood that are a huge part of who I am and how I got here. Going back to photographs of people, I think it's about time we saw people with disabilities who look appealing (while still looking human rather than airbrushed to death): smart, sexy, in control of their lives, interesting, vibrant, sophisticated. Right now I think the mere notion is taboo, sadly.
Vision is often used as a metaphor in literature, but it's used far more as a metaphor than as a real description. King Lear isn't about disability for all its grand theme of blindness, it's about power and cruelty and relationships. Saramago's harrowing novel Blindness, which shows a society suddenly deprived of sight descending into filth and violence, has been criticised for being just a metaphor and a negative one at that, a way of looking at the worst side of a sighted society which is uninterested in the realities of life without sight. John Wyndham wrote another, and probably better-known, novel about what might happen if one day almost everyone woke up blind, The Day of the Triffids. He's more concerned with social breakdown and attempted recovery, and of course there are the famous man-eating plants, but you can still sum it up with, "In the country of the blind, the one-eyed man is king," a proverb which has nothing to do with actual blindness. The novel contains at least two appalling accounts of people waking up blind and deciding that suicide is the only reasonable option, in one case a woman who kills her children along with herself.
It always seems to be about tragedy. Following the classical definition, tragedy is meant to evoke pity and terror. Disability evokes pity and hatred, the hatred probably stemming from fear. (Not that I think the fear lets people off the hook, I've always been uneasy with the suffix "-phobia" being used for types of hatred, as it turns the perpetrator into a victim.) And again we have the notion of display. Tragedy is something acted on a stage, to be looked at and learned from and used for the viewer's personal satisfaction. No wonder I bridle when someone learning about my disability describes it as "tragic".
I don't want to end this article on such a grim note. Yes, this stuff is depressing, often plain shitty, and I will sometimes have a good rant about it, but it's not my entire life. Let's go back to quilting, something I only came to after years of illness, after most of my other usual pastimes had become impossible. It is not only a source of pure joy for me, but a completely unexpected one. From early childhood until I fell ill at 19, I was a keen and extremely busy musician. It was a huge part of my identity, both personally and socially, and as a result it never even occurred to me that I have rather a good visual sense until someone assessing my cognitive impairments for university casually pointed out that I'm a visual thinker. Ten years into the ME, I was pretty severely disabled. I was mostly housebound, the music had fallen by the wayside years earlier, my eyes couldn't follow standard-sized print any more nor my hands control a pen for long enough to write more than a very wobbly shopping list, but elfbystarlight had been telling me about quilting and I decided to buy a few pieces of fabric and give it a try.
To my delight, hand-sewing requires little muscular strength and it's a different type of visual focus from reading, so that as long as I pace myself reasonably, I can get a surprising amount of sewing done. Some quilting can even be done curled up in bed! I listen to audiobooks while I sew, and again that's a situation where I thought I'd lost something but found that I'd gained as well. Yes, they're slower and there's less choice, but the RNIB library has thousands of titles, more than enough to keep me busy for years and years, and I can listen to any of its books at a moment's notice without having to go out and buy it. Listening to a book read aloud makes it something quite different, the characters take on new life and you find things you'd never noticed before even in a book you may have read ten times. I find that I gain extraordinary pleasure from gazing at colours, studying patterns, and feeling the fabric in my hands, not to mention the excitement of creation. I wish I'd continued art at school past the age of fourteen, I don't know the first thing about it and can't draw for toffee, but it turns out that you can get away with murder in this respect, between copying and adapting pictures found on Google Image and finding beautiful fabrics that do half the work for you. Ironically, while I never learnt to draw and thus am having to learn how to look at things almost from scratch, I spent quite a bit of time at university studying concepts of seeing from the literary and psychological points of view, Bulger and Mulvey and the discovery that if you talk to a layperson about the "male gaze", they almost invariably mishear it as the "male gays".
It's a different visual world I live in now, and in many ways a lovelier one. And now, if you'll excuse me, I have the last two hours of a Pratchett audiobook to polish off while selecting and cutting fabric for an exciting new quilt I'm working on. It's my own design.