Body image and disability
After life-changing injuries, people sometimes looked different than before and their bodies didn’t always function in the way they used to. They often experienced anxiety, frustration, and problems with mood and emotion. People with brain injury often dealt with a range of challenges that weren’t always apparent' problems with memory, understanding, behaviour and personality change. These changes had consequences for their lives and their identities.
Because he has changed so much since his injury, Adrian feels that his old self died. It is...
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For example about two years ago, my friend [name] said to me, again I’ve known him more, I’ve known him 36 years of my life from the age of 6. He lives in [place]. He said to me, “Come on over, guy, the guys are getting a get together you know, at the [name of pub] Pub. You can stay the night at mine on Saturday evening”. I said to him, I checked my memory aid and said, “Ok, that’s great, [friend’s name], but I’m going out Friday night. I know my stamina-wise I won’t be quite up for it because I’m having a heavy night Friday, do you mind if I give it a miss?” He said to me, “The old Adrian wouldn’t have done that.” I said, “The old Adrian died.” I felt bad saying that to him, but I had to say to him, “Look, I’m not the same person anymore.” He knows me but he doesn’t know me. Even though he’s known me from the age of 6, I can’t … I might want to do that, but I know I can’t do that. I’m aware, I can see, it’s not that I can’t do it. I just don’t know if I can do it or not. I don’t want to say to him, yeah, I’ll be there and then not be there. I want to be reliable. I don’t want to say, I don’t want to be oh I’ll do my best. I’m either there or not.
I said to him, I said to him like, “I can’t be there. I think I’ll be tired.” “Oh the old Adrian wouldn’t have said that.” The old Adrian’s dead. I’m not the same person. I might look the same person, but I know... I felt bad saying it to him, but I had to make sure he was aware that I’m not the same person any more. I’m not. I have the will of the old Adrian knowing I want to do that. But I don’t know I can do it, which is more like why there’s uncertainty, which is why I don’t want to confirm either way I’d rather not say it. Yeah.
After injury, people we spoke to often experienced a loss of self-confidence and because of this some became withdrawn and didn’t want to go out. Nick Y said that after his son Jamie was injured he didn’t want people to see him in his wheelchair. “He would not let me take him in his wheelchair down to the town centre because he didn’t want people to see him. He’s past that stage now, I think.”
Another factor that affected people’s confidence was how they felt about the changes to their body after injury. Simon A said initially he was embarrassed by his injury. But people said that getting fit, pushing their boundaries and going out with friends helped them to regain their confidence. Louise worked through her body issues by photographing herself, a process she found “aesthetic and therapeutic”. By raising their body confidence they became confident in other areas of their lives.
Initially Jack put on a lot of weight and was reluctant to go out. He got his confidence back by...
Why do you think you gained weight?
Well I was fairly big before the accident and I'd lost a tremendous amount of weight in hospital from not eating and everything. So I think the weight gain was my body getting back to its last recollection of a healthy weight, and also the fact that I wasn't moving around. So I'd put on the weight that I'd lost and then a bit more so I think that's the reason, just lack of moving around and eating rubbish all day didn't help so.
And how did that make you feel?
Not very good. Having lost a leg is one thing and then to be overweight the way you were, my confidence was quite low at the time. So I was kind of reluctant to go out and about, and going to the gym and starting in there has helped me I think definitely. That's been the main thing that's helped me get out of that routine.
Has it helped you sort of psychologically as well you mean?
I think it's helped me more psychologically than it has physically. Obviously there's physical benefits of going to the gym and swimming every week, but in terms of my confidence, it's shot up since, even in the first few months just losing like the five kilos that I lost, it makes you feel so much better about yourself. So it was August when I started and I got back to work in about October. I got back to work only two days a week, but I got back to work. I mean that was one thing that I did as a result of starting the gym. It was obviously not just the gym, but I'd got to a level where I thought I could go back to work, but confidence definitely it helped. Getting fit again or even on being on the road to getting fit again definitely helped me hundred percent.
Louise pushed herself to come to terms with her scars after she was burned. She compensates for...
Could you tell me a little bit about how your injury has affected your body image?
Well it’s a difficult one because, you see, I was working with body image and identity before my accident as well. I actually think I wasn’t particularly happy with my body before the accident and my body was pretty perfect before. And this is why the project I think is interesting to everyone at every level because almost the more perfect and beautiful we are, the more issue we can have with obtaining perfection. I think I personally try and compensate a lot for the scars in terms of fitness, diet, clothing. I mean always have been quite creative in that aspect, but I think in terms of fitness and diet and stuff, I just feel that I really want to look good, and that is over-compensating. I just feel that, I guess the scarring is quite obvious in a sense. Even though I know you can’t see it and obviously I’ve got a boyfriend. And I go swimming. I went to St Tropez in the summer. I did a project in the South of France and it was hot, and I did want to go the beach, and I did want to swim and you push yourself through all these challenges, and it’s hard. It takes time, but it’s getting there. It’s okay, but yeah, I think I probably do over-compensate to a degree in other areas to make myself feel okay. Everyone’s got their little mechanisms of doing things. I think if you raise your confidence in other areas maybe work is one, relationships. Once those other areas raise up it kind of balances it out a little bit.
I went through all of that in the summer because I did two beach holidays. I mean when you come out the water I’d put trousers on because I’m not supposed to be in the sun at all really. So, people would have seen me momentarily and then, more recently I’ve been swimming quite a lot. It bothered me a lot in the beginning yeah, but once you push through that.
How did you overcome that? How did you push through it?
Just went to the beach and just forced myself to do it. But in the south of France all those perfect bodies – it wasn’t, maybe it wasn’t the right thing, but I didn’t think about that before I rocked up there, but it was too late when I was there. So, what you realise is nobody’s interested in what you look like. No one gives a monkey’s what you look like.
The way they looked was important for some. They didn’t want to be different from others or be stared at, and disliked it when others were aware of their impairments. This sometimes related to pride. Bill said that it was important to be able to show other people you’re “a whole person” because they don’t understand what a “part person” is. Amputees were able to wear a cosmesis over their prosthetic limb to hide it, which Nick Y said was important for him. Jack didn’t want to wear one because it was not realistic enough for him.
Bill said that body image was not a priority for the NHS, but it is very important to survivors...
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On a prosthesis there is something that you can do that that you can have silicon cover.
Cosmesis. And it can be colour matched to your skin colour. Hairs can be put on it, and you would not recognize… well you would recognize, but I mean the point is at first glance you wouldn’t recognize. Now if you’re going to put trousers over it, it’s absolutely pointless but if you want to go out in shorts or you want to wear a kilt, then it’s very important that actually you have and ability to have an appearance of normality. You might not want to have it all the time, but it’s important that you have it at least part of the time.
The NHS do have a budget, or they did have a budget I should say for that. But bizarrely they will only do it for below knee amputees. Is that discrimination? It is in my book. You know, if a below knee amputee can get it, why can’t an above knee amputee get it. And the reason is cost, weight, there are medical problems associated with it. But if you as the patient are willing to put up with those problems for the benefit of what you’re trying t achieve, then why shouldn’t you. It is important because body image is very, very important to a psychological support and well being.
Sometimes this changed and people got used to others staring or felt their physical appearance improved. It was important for some to accept their injuries and not hide them, although other people with brain injury thought the hidden nature of their impairments could work to their advantage.
Part of Daniel’s skull was removed after brain injury. A dip in his head was later covered with a...
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I just get on with it now. Before, like before the actual plate was put, when I was like able to go to the shops and stuff like that with the dip, it was like everyone kept looking and stuff like that. And I didn’t care at all. But now I feel like, oh imagine if I’d still had it and stuff like that, and now it’s just, well get on with it. I’ve got a scar on my head, you know, what I mean?
So before you had the plate put in the bone had been removed and hadn’t been replaced, so you could very definitely see?
Oh yeah, everyone kept looking. At the time I wasn’t at all fussed. I couldn’t care less about what people were looking at. I would start laughing at them rather than like being like angry or stuff like that. Because I was saying, I just kept thinking, yeah, I’m getting, in a month I’m getting a new one. So do you know what I mean? I just thought, forget it. Getting a new one, so you lot can laugh or stare at the moment, but when I’m back to normal I’ll have a nice, not nice but I’ll have a scar there. So it’s people now that they probably do think, oh look at that guy with the scar, but again, again it doesn’t bother me at all. You know, literally at all. I couldn’t care less, what people will think. Because obviously people think and look and stuff like that, but to me it’s not a problem at all, especially after what I’ve been through. Again I couldn’t care less. But just be happy like.
We asked people to think about whether they felt disabled by their injuries and their responses varied. For instance, Juri who has a visual impairment hadn’t thought about whether he was disabled, while Bridget said she did, but also didn’t, see herself as disabled. Jack said he felt more disabled when his prosthesis was covered by trousers, as people then saw a man with a limp.
Even though they thought they probably were considered to be disabled, people didn’t necessarily feel that way. People like Ambrose thought others probably see him as more disabled then he himself feels. For some, this was because they thought their condition would improve or they would be cured in the future. They recognised that there were things they could no longer do, but there were others they could do and do well. Jack said he felt restricted by his limitations since his amputation, but didn’t see himself as disabled and Nick Y said his pride prevented him from accepting he was disabled. Accepting disability took time, but acceptance didn’t mean that their injuries became life-defining. It was important that others saw them as the people they are and not their ‘disability’.
Even though his legs don’t work, Sam doesn’t feel disabled. He firmly believes there will be a...
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And do you see yourself as disabled?
I don’t really know. I mean it’s a word and you know, you say a word often enough and it loses meaning. Do I see myself as disabled? Yeah. My legs don’t fucking work, you know, it’s, it’s a massive pain in the arse. It’s a pain in the arse every time I wake up, every time I get ill, every time there’s some fucking stairs. Every time, you know, there’s something you can’t do something. So of course you see yourself as that.
To be literal about it, I don’t see that there’s anything I can’t do really bar some ridiculously physical things. You know, I don’t know, depends what you mean, if you mean do you see yourself as like something’s happened to you and your body doesn’t work the same way. Absolutely. If you just mean do you see yourself as handicapped across the board, then absolutely not. No. You know, I think I’m lucky that, you know, I think the way I was brought up, I was always confident and I felt like, you know, to the annoyance of lots of people I’m sure, that I was, you know, better than them, at you know, whatever I wanted to do. So that kind of made me feel, like I still had that stuff. You know, there was always like thinking stuff that I could do, and I always felt like I was a physical person, but I was also kind of like somebody who thought a lot as well, and still being able to do that and still being able to feel like you do that well.
I think a lot of people in wheelchairs focus on trying to prove they can do the things that people say they can’t do. So it’s like we hiked up a mountain. We swam something. We do Paralympics. And I think that really works for some people. Fair enough you know, if they’re like that and they were like that before their accident that was what they were all about, then fair enough.
But for me, I would focus on doing, I like, from the beginning I wanted to focus on the things I could still do just as well as before, and that, you know, I could still do better than other people. And that’s really an important part of not seeing yourself as disabled. Focussing all, all your efforts on something that you’re never going to do right while you’re paralysed, because I firmly believe this is like seven to… six to ten years away from getting sorted out to some measure. But to focus on doing stuff that you’re not going to be able to do properly and to, I don’t know… It just never made sense to me, but I don’t pretend to speak for everybody and I know it’s really important and really like has a very positive effect on a lot of people. I just never wanted any bit of that. I do exercise to make myself strong, not sport or stuff like that. I used to play a lot of sports and not be able to do like you did, you know, just frustrates me and makes me annoyed.
Although some people weren’t sure if they were or if they felt disabled, others definitely thought they were disabled. Nick Z thought it was important to come to terms with the fact he was disabled, but that it was also important to strive for improvement. He said, “I strive to be as able as possible, but I am paralysed from my chest down. I think it’s important to psychologically come to terms with that fact, whilst at the same time striving for improvement”. Louise said she had a “minor disability” as she can no longer run or walk downstairs properly, and others said that they felt disabled at times.
Sometimes Rob forgets he is blind. He thinks it’s a bit extreme to call himself disabled.
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Do you feel disabled?
On a day-to-day basis, I’d say no. I’m most, I mean I know there’s a difference now and I know, I know I’m less able then I was before. But for me to say I’m disabled it seems a bit extreme. It seems like it’s more than it is. Like I can forget I’m blind sometimes, like if I’m, if I’m talking to my wife, I’ve got a really strong image of her in my head and like I can, I forget I’m not seeing her, because I can hear her voice and I’ve built an image of her in my head and she’s next to me, and I’m looking in her direction and I feel like I can see everything around me. My head, my imagination like lets me feel I’ve never seen this house, or I’ve never seen I’ve never seen this sofa I’m sitting on or anything like that, but I feel I can see it. I can see it in my head using my mind. And life’s more difficult for me now. But to go as far as to say I’m disabled. I don’t know, it’s quite difficult for me.
And I mean if it was a different injury as well like maybe, like if I was in a wheelchair or something like that. Like I said before, gauging people’s reaction of like their face or like if they, if they can’t even look at you or anything like that, you can tell it’s probably something to do with my disability if they struggle to even like not be awkward around me. But if they are just disinterested, just they’re not interested in like who I am if you know what I mean, like it might be that but I just can’t see it, because I can’t see the way they react to me.
When it came to judging their level of disability or whether they were disabled or not, people compared themselves to others who had similar injuries, but they didn’t see always see themselves as the same. Initially after injury, Bridget didn’t think she had much in common with other people with brain injury because they looked to be more severely affected by injury than she was. People also felt that the hidden nature of brain injury made it hard to deal with.
Ed feels brain injury is almost the worst kind of disability because survivors’ impairments are...
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Do you think that brain injuries are a form of disability?
They’re actually...brain injuries, and actually sort of mental illness, is, to some extent, the worst type of disability, because it’s invisible. You can’t see it. I mean I stand up, I look in the mirror, I look, apart from my mad beard, I look, I look actually, I’m in pretty damn good shape at the moment. You know, I’ve got fitter than I was. I’m losing weight. I’m shaping up pretty well. You look at me, I look fine. However, I haven’t got a glass skull. You can’t see what’s in there. And in that respect it’s very difficult it’s very difficult to come to terms with. If you add into the fact that there is still an awful lot of stigma with, associated with brain injury, or mental illness, anything to do with the brain, it actually manifests itself to actually, it is, very problematic. It does disable people. It makes people less able to do what they should be able to do.
Yes, it’s not it’s not as physically obvious as someone that’s in a wheelchair, got one leg, missing an arm, blind, deaf, or whatever it might be, right. But it’s, it certainly affects people. It affects people very significantly, because, you know, if you, you might be, I don’t know, let’s say you’re on the bus and you have a funny turn, people around you don’t know there’s a problem inside. All they know is that someone’s gone a bit mad. Someone’s offending them. Someone’s stepping into their space. They become fearful. So yes, it is very, very much a disability.
Last reviewed October 2015.