People with disabilities, especially women, have all the same pressures currently non-disabled people do to look “good enough”, with added bonus of being either non-sexualised or hyper-sexualised, as well as having people infantize them to an incredible degree.
Talking about disability and self-esteem and body image is very difficult for me. People look at me and see a woman without a disability (or a woman with a non-evident one), and I pass. I don’t get the odd looks that a woman of my age (or younger, or older) using a cane or crutches would. I don’t get the pats on the head that women who use wheelchairs report, and I don’t have people leaping out of the way when I’m using a motorized scooter.
But at the same time, women like me are often used as stand-ins for “horrible”. Whether that’s the simple of “she took off her glasses and suddenly she was beautiful!”, or the more complicated of “oh my gosh! the woman I had sex with is actually a crazy person! Quick, let us make many movies about crazy = bunny-boiler = grotesque!”, I’m well aware that women like me are bad, ugly inside, and unacceptable.
These things add a whole other layer to the conversations that many women, feminist and non, have about self esteem and body image. We are all inundated with the constant barrage of White, Long-Haired, Slender (But Not Too Slender), Tall (But Not Too Tall), Unblemished, Healthy-looking, Young women in most advertising and fashion spreads, television shows, movies, and even on our book covers.[1. The last one is so ubiquitous that until just now I didn’t realise that of all the non-fiction books on my desk about disability, only one has an actual image of visibly disabled people on it. Most of them have very plain covers, or abstract-type art on them.]
At the same time, though, poster children and the pity parade are a fairly common image of disabled children – whether with visible or non-evident disabilities – that present people with disabilities as weak, as undesirable, as needing of pity – and always, always, always, as children. Very rarely are images of self-possessed, happy, disabled adults shown, unless they are in one of the “he’s so brave” “look at what she’s overcome” news stories.
I don’t know how this affects other people, or how they deal with it. I know that when Don first got his cane, and then his wheelchair, his self-esteem and image of himself took a hit, and it took a while for me to convince him that yes, I still found him attractive (and I can’t tell you how much I love that wheelchair, since my sexy sexy husband now has energy!). I know for me it would be nice to see images of Actual Crazy Women who aren’t mockeries of women like me, but treated like actual people. It would be nice to see casual fashion spreads with people with evident disabilities in them, rather than only seeing “diversity matters!” posters that include maybe one (male) wheelchair user, usually white.
As I said, I find these things very hard to talk about, because in many ways I don’t even know where to start. While to some extent discussing pop culture and representations there is important, how do we, as individuals, deal with our own self-esteem issues? How do we, as a group, tackle the constant attacks on people with visible disabilities to hide parts of themselves? Make yourself more approachable by putting sparkles on your cane! Soup up your wheelchair and maybe someone will ask you a question! Hide your obvious aid-devices so that they don’t offend people! Cake on make-up so no one can see your scars!
I think there’s so much here to talk about. Please, tell me your thoughts.
I keep refreshing the page hoping someone else has gotten the ball rolling, because this has been on my mind a lot lately and I am not quite sure where the jumping-off point is.
“oh my gosh! the woman I had sex with is actually a crazy person! Quick, let us make many movies about crazy = bunny-boiler = grotesque!”, I’m well aware that women like me are bad, ugly inside, and unacceptable.
And on the flip side, there’s the “Manic Pixie Dream Girl”, which term just strikes me as a whole mess of ableist language and pathologizing (pathologization? Firefox spellcheck, you defeat me once more!) of female happiness.
Cake on make-up so no one can see your scars!
Would it be o/t here to talk about how we deal with the visible signs of invisible disability? I don’t want to derail from visible disability issues, but I’d really be interested in hearing other folks’ thoughts about it, because I am starting to realize what a major body issue that is for me. (Honestly exhausted and lacking in concentration today; I’m happy to delete if this is o/t.)
No, I think it is totally on-topic, because for a lot of us there are visible signs of of our so-called invisible disabilities. I have visible scarring from self-harm, for example, as do many other people.
I also think it’s a really hard thing to talk about (hence why this post is so unfocused).
If you can get your hands on a copy, “Between Myself and Them: Stories of Disability and Difference” (2005) is a great collection of anecdotes featuring young adults with various disabilities and their experiences – it even features actually photos of actual disabled people on the cover! I was a contributor, and I wrote a short piece on, not only body image, but also self-esteem and relationships. As I don’t have publishing rights, I probably can’t post my whole chapter here, but I’d be willing to email it to you to work into further discussions?
I’m a stimming person, which is a pretty classic visible-sign-of-invisible-disability I guess. A year or two ago, I remember having this whole mental narrative about my imaginary future marriage and why it wouldn’t be possible. I felt that the people I was friends with who I stimmed in front of all thought that my stimming was cute or funny or quirky or something. So, I had this whole scenario thought out, where what if I got married to someone who thought that my stimming was okay because it was SO CUTE, and then I did some sort of regular asshole thing, like cheating on the person, or not doing my share of housework, or whatever normal people do when their relationships are going wrong? And what if when the person and I were having an argument, I started stimming?
I imagined the person saying, “I can’t fucking believe you would do this to me when I still wanted to be with you even though you do all that weird stuff with your hands! You should be grateful!”
Since stimming is just a kind of expression, it isn’t just funny or joyful, it’s also angry and sad sometimes. But weirdness is only endearing when it isn’t angry or sad. Some people have really liked me and then when they see me talking about something that makes me angry, they act like a unicorn died. I used to try to be a Manic Pixie Dream Girl on purpose, for cover, but it only lets part of me exist. I also wouldn’t be attracted to an MPDG myself, so I don’t know if I want to date anyone who is attracted to them.
It’s not exactly going super smooth, but at this point I try to just think of myself as disabled and not try to fit myself into some sort of stereotype that was made for a non-disabled person. I want someone to be attracted to me because disability is one of the things they are attracted to in another person.
I have both visible and invisible disabilities. The evidence of mobility impairment, I don’t try to hide, but I admit it took some time for me to get used to a walker emotionally. I was 21 when I was given one of those drab, grey walkers at the hospital… it took me about a week or two to get over my prejudices there. I don’t know what I would have done if that device had turned out to be particularly useful to me. I don’t know if I would have dressed it up or gotten another one. I later got a four-wheeled walker with a fold-down seat… and she’s something to show off — she comes with blue flames! I did some crafting to cover the company logo with pretty patches, one of which looks like jewelry. (My wheelchair is standard black and I’m not looking to change that. Have some nice-looking cushions, though.)
I know that because I am young and visibly disabled, people are going to notice me. I think that my style has changed because of that. Before my condition became apparent, my dress was… ignorable. I tended toward dark or muted colors. Now I wear much brighter things, bigger jewelry… just more. Now I wear hats, too. That’s not to be distinctive but to limit light, but I know they make me noticeable, too. It’s pretty common for strangers to complement my hat and ask where I got it. I got one shirt specifically to give people something to look at if they’re going to be looking anyway. It’s bright pink with black and yellow lettering (including some glitter) saying, “It’s NOT that SERIOUS!” Most of my visible disabilities, I’m not at all ashamed of or embarrassed about. When my hand flies up for no reason and people stare, I’ll give a pointed look back and go on with my business. It has changed my self-image (body-image? dunno): It’s made me bolder. I know people look, maybe even pity… and I’ll give them something to look at and no reason to pity.
I do have a scar from a recent surgery, the first one I’ve had. I’m not exactly ashamed of it, but I feel funny about it. I don’t hide it but I have freaked out at things some people have said about it and I did do the “would you still want me if” thing with my partner. But I know it’s just something else to get used to.
It’s the invisible disabilities that give me the most trouble. Cognitive stuff. Among other things, deficits in executive function (which explains some of why this is so long). Limited emotional understanding. Those can make social situations very difficult. When there are problems there, I do get embarrassed, even ashamed though I know it’s not my fault any more than my limited walking. That’s really hard because these notions are entrenched that people are “supposed” to be able to control these things, that not doing so is some sort of moral failing. But my very control systems are down. On a good day, that’s hard to even think about. The whole thing still gives me trouble from time to time. Briefly gets me ashamed. Creates days I want to stay in despite having a good day physically. I feel funny about that… but I understand why it’s hard for me to integrate into my self-concept. I understand that by the very issue, I might be unable to resolve the internal conflict or that it might take years. But mostly I’m happy and I almost always like myself. It helps that my partner has been very supportive.
Something I could have used that I didn’t have: a group to tell me that disability is acceptable. That it’s not something you must fight against every moment else you’ve “given up”. That’s basically how it was framed to me in the medical community. I wish such a concept could be integrated into info for people with conditions that tend to lead to significant disability. That it’s not health or increasing DOOM. I know there are other things, but that would have made a big difference to me. The public, the media, those are bad, yes… but I wish views from the medical community were different.
I’m always stunned when I see a representation of a visibly or invisibly disabled woman I can relate to (I am either/or, depending on whether I need to use my wheelchair on a given day). Stunned because it’s so uncommon; because I am SO USED to being erased. Passing is problematic to me, but so is not passing.
It’s taken me a long, long time to realize just how powerfully I have been affected by body image issues. Like, when I first began using a wheelchair, I was all, ‘Hey, awesome, I can go places again!’, but then when I began walking more I realized that over the years I’d learned to avert my eyes from people.
That disturbs me profoundly, because it tells me that when I use the wheelchair I feel unequal; I feel unlike everyone around me. And I carry that inequality outside the chair too. On a walking day, if I meet a dog walker I’ll often smile at the dog but be unable to meet the eyes of the human. It feels kind of like being an alien.
Other times (most times), I’ll obsess over magazine and TV pictures of women with unscarred, undisfigured stomachs. That’s a huge deal to me, a huge aspect of being different that I can’t get around. I’m rambling because, like another commenter, I find it hard to get me teeth into the subject just because there are so many directions from which to approach it…
Clarification of my above comment: re: passing, I mean MY passing, not anybody else’s. It occurs to me that what I wrote could be read as me judging how or if other people pass, which is absolutely not the case.
By ‘problematic’ I mean… when I pass I’m relieved not to be noticed, but I’m also worried because I assume able people think I’m like them, and I’m not. I’ve had different experiences and if we get into a conversation that touches on this, I’m going to have to out myself, maybe justify using terms like ‘disabled’ at all… while I find not passing problematic because I’m having to be always alert for the other set of judgments that come with recognition of disability.
I’m really glad for this post. I saw it last night, but it’s been really hard to think about. I’ve always had body image issues and since becoming visibly disabled I’m even far more conscious than I’ve ever been about it. My mind goes: ‘People are staring at me, I need to look pretty.’ I have a cane that I picked out that I think is gorgeous, I bought it because it was gorgeous, but it has become problematic. My cane is the prettiest mobility device I own. It is also the least effective. The loftstrand crutches work a lot better than a cane, and on the days that I’ve gotten over my internalized ableism, a wheelchair works the best. The device that I use the most often? The cane. Because it’s pretty, and it becomes pretty because it’s less intrusive and I look less disabled.
When I finally accept that I need crutches or a wheelchair, I try to dress better. In fact, I went to a clothing store the other day and was almost in tears because none of the “pretty” clothes fit me right, and people were going to think that I was so ugly and lazy in the wheelchair. And then if I’m in the wheelchair, it’s just got to look cool. My brand new first wheelchair needs an entire can of spray paint dumped onto it just so I don’t look ‘too bad’.
Personally, I do think it would be great if the people who made mobility aids tried to make them more diverse and in different colors and styles. And yes, prettier. I do not think that we should do these things so that able-bodied people would be more at ease, but so that people understand that mobility devices are kind of like clothes: usually pretty necessary, but it’d be awesome if they weren’t all uniforms.
@Beth
“Something I could have used that I didn’t have: a group to tell me that disability is acceptable. That it’s not something you must fight against every moment else you’ve “given up”. That’s basically how it was framed to me in the medical community.”
I agree so much with this. I’ve been lucky enough to find very accepting disabled communities online, but once I leave the safety of those communities and go to my doctor’s appointments, they either tell me how terrible my diagnosis is (“for someone so young too!) or how I need to keep fighting it or it will be terrible. I’ve found out on my own that I am stuck with my diagnosis, that there is no cure, and it would be so much helpful if people just let me try to accept it and go on with my life. Many of the forums I’m on for the specific dx are all about fighting everyday. I can’t do that. I’d rather just go out with my friends some days, or go to school, I don’t want to keep fighting something that’s already a part of me.
my stick is solid shiny black. (i wear a lot of black; it goes with.) i don’t walk well and can’t stand long; if there aren’t chairs available i’ll sit on the floor. i have visible scars from self-harm and some are real damn impressive. ‘course, i’m not young any more neither, so the expectations are somewhat different.
I hope what I’m about to say is on-topic for this discussion. Thank you for bringing this topic to light. I’m totally blind and am in recovery for an eating disorder. I constantly was told: “how can you have this problem when you can’t see yourself?” Even many therapists didn’t know how to react to me. It was frustrating and isolating because my disability became such a huge part of my treatment when in reality I was having the same struggles as the other girls.
my disabilities interact in unfortunate ways here, though i don’t mean to whine too much because i know i am privileged in even having a choice about how much of my physical disability to make obvious.
one of the ways my social anxiety manifests is needing to be as invisible as i possibly can, and i’ve perfected the art over a lifetime till i’m usually quite good at it. i even got called on it by another patient in a psych hospital once. (i also know that being able to be invisible, to even have a chance to get good at being invisible, is completely a function of my privilege.)
anyway, it’s getting harder for me to walk long distances and especially to stand. but i get panicky even thinking about a mobility aid, because i already feel so visible and naked in public. if i sit on the floor or sidewalk i feel like i’m calling attention to myself. really, if i accommodate my physical disability in any way when i’m out in the world, i am no longer able to function because of the social anxiety. so i stay home a lot, and don’t even get out for necessities, like groceries. and i don’t have a solution.
@Yasona
“Personally, I do think it would be great if the people who made mobility aids tried to make them more diverse and in different colors and styles. And yes, prettier. I do not think that we should do these things so that able-bodied people would be more at ease, but so that people understand that mobility devices are kind of like clothes: usually pretty necessary, but it’d be awesome if they weren’t all uniforms.”
I think this is one really big issue with lots of impairments, which is partly social and partly practical – a diminished capacity for self-expression. All of us are judged by our appearance, but more privileged folk have a greater capacity to control what is seen and how it is judged. Putting sparkles on one’s cane, as Anna put it, *may* be about trying to look more approachable to folk who are intimidated by paraphrenalia. Or it may be an attempt to assert one’s own identity, in the same way that someone might customise a rather unassuming jacket. And I don’t think that need is to be underestimated. Our frustrated need to express ourselves is part of this entire picture, and probably somewhat distinct from the pressure to be meet social ideals of attractiveness and so on.
I’ve been thinking about something closely related to this a lot lately; How my presence in public, as a person with a disability, makes my body political space. This isn’t something people with disabilities, especially women with disabilities (and racial minorities with disabilities) have much choice in. My ‘person’, which I define as myself, my service dog, and any assistive devices I’m using becomes a political space as soon as I enter the outside world. It’s almost like because I’m in public I only exist to serve a purpose to everyone else -to reinforce their notion and ideas on disability- not simply live my life. Worse because I’m black, things become racialised very quickly.
Yesterday I went to concert on campus and a student came up to me very demanding, asking what my dog’s name was, how old he was, etc. No hello, no pleasantries, she saw my presence as only to answer questions about ‘the dog’, who she seemed to treat as public property, because we where in a public space. The moment she realised I was not pleased, she grimaced, turned to her friend said “Jeez, that black girl is so rude, I just NEEDED to know about the dog.” When I use my scooter or wheelchair I try not to dress poorly because I realise I’m making a political statement about women with disabilities (specifically black women with disabilities).
I recently covered one of my canes in band stickers and it’s been interesting to see the difference it makes in the reactions of others; while I did it to primarily make myself happy, it seems to signal to others (especially non-college aged folks, I thought it would be the opposite) that ‘I’m like you -it’s okay’. I have no outwardly visible signs of my physical disability, unless I choose to unveil scars and that rarely occurs. I really should be using a scooter or wheelchair full-time outside the house, but I just can’t bring myself to yet. When I think about the stark difference in how people relate to me it makes me reach for one of my canes instead. I guess I’m muttering off-topic now…
FWD is basically the entire reason that I don’t have a giant complex about my cane and even thought to get it in the first place. (I love my cane. It’s pretty shiny sort of steel grey, and it’s collapsible.) My cane is, generally, my only marker of anything being wrong with me, though the guard escorting me to the plane at Heathrow (long story) commented on how pale I was, which I’m pretty sure was due to my being sick and anxious and dizzy and shit, since my whiteness has never before been found worthy of comment. (that was a torturous sentence. tl;dr sometimes I look really pale and sick as well.) Scars are less of a problem, sicne I did a very good job of picking easily hidden and rarely looked at locations, and carefully always applying neosporin and bandaids resulted in even me barely being able to see them and I know exactly where they are. I have gotten some stares as a conventionall attractive young white girl with nothing apparently wrong with her (though until the UKBA guards at Heathrow, nobody I wasn’t related to had asked about it), but I haven’t had a bad experience yet, just people being polite and solicitous.
I don’t have a problem accepting myself, including my disability, but I feel unaccepted by a large part of society. So if I want to look cool i want to do so for others, and as a blind wheelchair user I find that hard. Sometimes I wonder if people look at anything or anyone any more. 2 days ago, someone walked backwards and would have collided with my wheelchair if she hadn’t been warned. Sometimes there are people talking to each other without noticing that someone wants to pass. So why dress up, wear makeup, etc. if people won’t look anyway? The only times I do this is when I’m on stage or when I’m particularly attracted to someone and want to get her/his attention. Other than that, I take care to feel comfortable, which meanns for example that I don’t wear makeup. I do wear jewelry sometimes, when i feel like it, but never large pieces. I’d feel I was hiding my body beneath them, and I have nothing to hide. since I’ve had this wheelchair which changes color in different light, nothing has changed in the way I’m treated by strangers or near-strangers, although I suppose it enhances my appearance. Friends and acquaintances notice a change if i change my looks, but even they only notice it once in a while.
You are all writing about things I feel too. I think of myself as having chronic illness which has symptoms and outcomes that disable me. I have a lot of surgical scarring too. It has taken me a long time to think of myself as disabled because I didn’t want to be different but also that word disabled is ‘owned’ by people who are more seriously ill than I am. I think too that I wanted to believe in the possibiliy that things could be over. My issues started with a cancer diagnosis so that shaped my response to my health and body issues I guess; such as I was alive – so the outcomes I am living with are not that important in contrast (according to other’s judgement). I have chronic fatigue and I use a walking stick because I can’t stand for long lengths of time on feet that don’t work properly, my cognitive functioning can disappear but the thing that depresses me the most is my permanent hair loss. This is only partly because of how it affects my sense of femininity and my vanity. Mainly it is about how others see me. It means that almost the first thing they know about me is that I am someone with illness and disability issues. I am approached in cafes and asked about it, my sister wishes I would wear a wig. I think the thing that disability takes away from us is a choice in how and what we present about ourselves to the world and that even socalled invisible disabilities do this.
Just wanted to say that I have had periods in my life where I have struggled with my body image being a Little Person (dwarf). I think in a lot of ways I try to over compensate by trying to get my skin as perfect as possible, exercising (sometimes too much) and wearing nice clothes so I can be considered if even just a little pretty by others. It’s a weird dichotomy that I go through;I want to be appreciated for my own beauty but at the same time I sometimes wish I could be invisible-free from the judgmental gazes.
This rang a bell for me:
‘When I use my scooter or wheelchair I try not to dress poorly because I realise I’m making a political statement about women with disabilities (specifically black women with disabilities). ‘
I’m a 39 year old, attractive, professional woman who wears leg braces because of a congenital spinal condition, and walks with a relatively slight, but noticeable, limp. When I’m dressed for work – professional clothing, hair done, makeup on – I go out and about in public and attract little attention. Let me run to the store on the weekend for a few groceries in sweats and no makeup, however, and the staring and obvious curiosity and pity are much more evident.
That said, I dress the way I do for me – because it makes me feel good, competent, like my life is in control. Basically for the same reasons I keep my house clean, lol – I don’t feel like I have to dress a certain way in order to be accepted, but that element does become clear whenever I am in public and not dressed in my usual way.