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Life-changing injuries

Being in public and other people's reactions after acquired disability

Life-changing injuries can result in a wide range of changes and challenges for people that may affect their interactions with others. These include impairments made obvious through the use of aids, e.g. wheelchairs, prosthetic limbs, long canes or guide dogs. They also include other less obvious or hidden challenges: fatigue, forgetfulness, saying the wrong thing, problems keeping up with conversations or understanding facial expressions. Since Rob lost his sight, he can’t gauge people’s reactions as easily as before. After brain injury, people found it difficult holding conversations with others. They sometimes overreacted or said inappropriate things.
 

Since her brain injury, Amy feels she doesn’t have the same level of “social grace”. She often...

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Age at interview: 59
Sex: Female
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What were the sort of problems that you had that were associated with your brain injury?
 
You don't have the same degree of social grace or discussion. So if something came into my mind I would just say it, whereas normally a lot of things came into my mind and do today and I don't necessarily say them and there's a reason that you don't necessarily say them. Also it takes longer to think, so many times when you're listening you don't hear the whole conversation so what you're responding to is only a part of what people said and misunderstandings can come from that, and I think that in many cases in the areas of face recognition and in the areas of expression, all of those things, once someone's been injured they have to be re-learnt and they can be re-learnt in many cases. But if they're not then a person can look perfectly normal on the outside but the person that's dealing with it feels that, 'Oh like this person's a little off,' or, 'this person doesn't like me,' or, 'why did she say that to me?' They don't feel, they don't feel comfortable because you're, you're not working within the social norms that everyone's comfortable with.

 

 

Raymond explains the complications associated with talking after brain injury.

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Age at interview: 44
Sex: Male
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I think back now and just remember how difficult it was really for me to talk in those days. Even today it’s still very, very challenging. And people don’t realise just how much goes into actually trying to speak' to gather your thoughts in your mind, how you want to express them, the mood you want to be in when you express the things you want to say, and then to get them across clearly and concisely can be very, very challenging. And I think for the first few years with me the hardest thing was trying to find and remember words that I’d wanted to say. And I was always speaking in too quiet a voice. Not out of because I was lazy, but because, you know, I’d be in the middle of a sentence trying to say something and I would forget what I wanted to say, so I decided to go very quiet then instead. And it used to annoy people quite a lot and I make no apology for it at all because it is really quite traumatic.  

 

Julie and Corrie explain that Wesley used to have outbursts in public places. They said this was...

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Julie: I mean it happens very rarely now, outside, but when he first came out of hospital, we would go out, something would trigger him off really quickly, couldn’t it?

Corrie: Hm.
 
Julie: And I’d have this abuse hurtled at me in the middle of a shopping centre, with him screaming and yelling and oh I used to want the ground to open up. Not, it wasn’t, it was strange, it wasn’t the fact that he was screaming and shouting and effing and you know, all of that. That bit I could cope with, because I would think don’t answer, just keep walking, or I would have to stand still, depending on whether he was still going to hurtle abuse as you walked, or when you stopped. It was the surrounding reactions of people, that you, you just get embarrassed.
 
Corrie: Yes, you weren’t embarrassed that you were being shouted at so much, as you were probably more concerned that people would think…
 
Julie: Badly of Wesley.
 
Corrie: ….badly of Wesley. “Oh my gosh, what a horrible man, shouting and ranting and raving like that. That poor woman she, you know, he, he must be a horrible son”, if they guess that relationship or whatever. And it wasn’t a case of that. It was a case of you didn’t want them to think badly of…
 
Julie: Wesley.
 
Corrie: …of him. Albeit if you’re looking at that snapshot, everyone’s going to immediately think isn’t he being horrible, but obviously they don’t have the standing or the understanding or know the background or the situation that that, everybody does that in different circumstances. We all make snap judgements about things that aren’t necessarily the case.
 
Julie: Yeah, yes, yes. I only had one reaction and it was only last year where he’d lost it with me in a shopping centre and was going garrity and berserk, and this young girl I suppose in her twenties walked past and she looked at me, she said, “How disgusting. How could you let him talk to you like that?” And she said, “He should be ashamed of himself.” And you just stand there and you think what, what am I supposed to say, and I just said, “It’s okay, just ignore him.” And she really obviously was, because he did let rip a bit. And I thought what do I do, I can’t stand there and say, you know, don’t worry, you know, he’s got a head injury, it’s fine. Because that wouldn’t give you any explanation either. You know, head injury could be the fact he’s got two stitches on the side of his head, you know, there’s no clarification. So you just have to stand there. And as you say, rightly so, I think its people thinking badly of him, because they don’t have the knowledge.
 
Corrie: At the end of the day they’re strangers. It doesn’t matter. You just have to move on.
 
Julie: I know but at that point in time it’s very difficult.
People reported positive and negative experiences with members of the public since their injuries. Those with mobility problems have been offered seats on the train or help with their shopping. But people have also been the victims of petty crime and have been challenged by members of the public over their use of a blue badge. Sam said his friends support him when he gets into difficulty with other people, but he doesn’t like having them fight his battles for him.
 

Simon B has been offered help with his shopping, which he found a little patronising.

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Age at interview: 42
Sex: Male
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There are many idiots who will park in the Blue Badge spot as there are other people who will help you get out of the chair, get out of the car into the chair. So for as many idiots as I shout out for parking in disabled… yeah, I’ll sometimes, I’m offered by two or three people in a row when I’m getting out the car. I don’t know if it’s just me. But people can be very generous and as equally as being very generous you can have utter morons. So I suppose that’s just human nature, isn’t it really? So, there’s no accounting for human nature really when it comes down to it. There are ignorant people. There are people that will stare, but on the other side of that, there people that will offer help. 
 
I don’t know whether it’s me, I just seem to take the good with the bad. I try not to pay too much attention to it. I think you can get very absorbed by the negativity of it if you pay too much attention or are too aware of some of the problems. I tend to be, it’s more of an impact on me when people offer me help that I don’t really need. I think sometimes they’re patronising you and they don’t mean it, but I think it’s nice that people offer help when they see an idiot like me, kind of rushing across Sainsbury’s with a big basket of food on his lap. Clearly I can cope because I do it all the time. People don’t necessarily know that, so I get offers of help quite a lot. But, no you just have to be quite tough to that experience of negativity.
 
I’ve not experienced any kind of direct hostility from anybody. I’m sure people have, but I can’t ever say I’ve experienced any kind of hate crime, which I haven’t, but I’m sure people have. I just haven’t personally experienced it. 

 

 
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John's phone was stolen when he dropped it on the floor in a public toilet. Initially he thought...

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Before your injury did you think the world was like this for disabled people?
 
Do you know what? It has opened my eyes. I didn’t think it was like this before my injury because I don’t think you think about it. You take it for granted, everyone does. It’s like I said to my occupational therapy about the shower. I said, “I can’t have a shower. I’ve got to go in the swimming baths to get a shower.” I said, “You go home, forget everything, have a shower, do what you want to do.” I said, “I cannot do that” So no, I took it for granted. 
 
I’ve had occasion where I went into a [public] toilet. I dropped my phone. A young fellow come past, he picked the phone up and went with it. I thought he was going to give me it. I said, “That’s my phone.” And he’s gone. So this is how the society is in London. It’s not really A-Plus. It’s not great round this area anyway. That’s how they are. My partner was outside the toilet. I said, “That guy’s just took me phone. I dropped it. I was getting a tissue out me pouch and when I went to pick it up he come along and he’s took it. I thought he was giving me it and he’s gone. I said, ‘Excuse me, that’s my phone’.” And that was it. I got out there and he’s gone with it. Couldn’t find him.

 

 

Since he lost his sight, Rob has found that some people seem to find it difficult to talk to him....

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Age at interview: 24
Sex: Male
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I just want to get across to people who aren’t visually impaired... Since I’ve lost my sight, it’s, for certain people, it’s difficult for them to talk to me. They, they won’t come up and engage me or like, like on a social level. I mean this is happening – it’s really been pointed out at college more than anything. It’s, at certain times like, like people will be less inclined to talk to me. Maybe they feel awkward or maybe, yeah, they just don’t know what to say; they’re worried about putting their foot in it or whatever. But, it’s really difficult because I struggle to engage people because I can’t see where they are, or whether they’re busy, or whether they’re doing something, and you know, it’s good to make an effort, don’t, if you see like a visually impaired person, you know, like in a social situation, I mean you shouldn’t really hesitate to go up, because I’d always appreciate someone coming up to me and talking to me and you know, just making the effort and if I felt like talking to them, fair enough, I would be like, “You know what, not right now”. But I mean it’s good to make the effort because I know it’s, it’s a dark intimidating world when you’re blind and the social side of things has been quite difficult for me. 

 
Out in public, people said they noticed others staring at them, possibly out of curiosity. This is something they can get used to; as Sam said, “That’s life”, but others didn’t like it. They worried that others might judge or make fun of them and thought people held negative views or had misconceptions about disabled people. This was attributed to the media’s negative portrayal of disabled people and current suspicions circulating about people on benefits. Barrie said the public’s reaction is usually “Why are you on benefits when there’s nothing wrong with you?”
 

Juri sees people staring at his injured eye. This bothers him because the way he looks is...

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Age at interview: 27
Sex: Male
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And when you’ve told anybody about it now have they reacted badly towards you?
 
Depends. Sometime I see people looking at my eye and they avoid asking me. But I know that they’re looking at it you know, because maybe you know, they lose their train of thought or they get like stuck there. And no but usually people who ask don’t get any type of I don’t know maybe empathy, but other than that nothing.

 

 

Kenneth thinks that the media contribute to people with brain injury being stereotyped as “mad”...

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Age at interview: 52
Sex: Male
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As soon as you hear of brain injury it’s natural that you’re going to feel slightly concerned for your own sake. Well actually I’ve found that most people are more likely to do harm to themselves than anyone else. I would say. It’s more likely to be an issue of self-harm rather than harming anybody else, which is what people worry about I think. I think people are concerned that you might have an anger management issue of some sort. But not really no. I haven’t really seen people turning on each other. It’s more turning on themselves, which is natural. Well I mean your whole as you know is completely destroyed and then you’ve got to try and patch it all back together if you can, which is not really possible.
 
Well you know, when you’re watching television or you’re reading newspapers, they always talk about something that’s happened in the media somewhere. It’s always commented on in a certain way. So you’re sort of stereotyped as a sort of a mad person. You know, then somehow you’re dangerous or something or that, you know, you’ve got anger management issues and so on. And I’m sure in the beginning that some people are in that situation. So yeah, you will get socially isolated. I mean that’s guaranteed. 

 

 

Sam always thinks of himself as being in a wheelchair, but other people have told him they often forget he uses one.

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Age at interview: 29
Sex: Male
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You said there that you don’t really think of yourself as being in a wheelchair.
 
I do. I totally do all the time.
 
Sorry you totally do?
 
I do. I do think of myself as being in a wheelchair.
 
Okay.
 
I think I could not think of that. I think of it all the time. You know, nobody doesn’t. But other people, I know this sounds like wishful thinking me saying what I want people to think, but I’ve just heard it too many times. Obviously when people first see you, strangers, people out and about, new people you meet, it’s the first thing they’re going to notice and they’re going to be intrigued and they’re going to want to know. But after a little bit, once you’ve kind of… Once they know, you know each other and you know, they have a sense of who you are, and you have a sense of who they are, I think you find that most people don’t even think about it. You know, I’ve lost track of the amount of times I go out to places and it’s like, “Oh shit, sorry, I didn’t even think of the fact you’re in a wheelchair. I don’t even think about that”, because you know, it’s always fine. So I think it’s good, but again sometimes you feel like people don’t understand. But I find, I think it’s quite good to feel like people aren’t making special allowances for you. That more than anything would kind of wind me up a little bit, you know. You know, because then you’re sort of taking away from what I’m trying to do which is to put in the effort to do something well.
 
People felt greater public awareness about life-changing injuries and their effects was needed, but said they had been unfamiliar with such injuries themselves previously. They felt there were misconceptions about how injury affected their lives. Sometimes they thought others saw them as more capable than they actually are, but they preferred this to being seen as incompetent. Ambrose said that people probably see him as more disabled than he feels.
 

Nick Z thinks people see him as a well person who uses a wheelchair. They don’t know about the...

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Age at interview: 49
Sex: Male
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But I think people who you come across assume that you are a well person, who happens to have to sit in a wheelchair rather than walk. So, you know, they are unaware and have no reason to be aware of you know, the problems that you might have with your bladder and your bowels and your skin and your chest, and, you know, your paralysis in your fingers and... And maybe its best that way, because I think you don’t want to be thought of as any more incapable than you need to be. 
 
But sometimes you do kind of get the impression that people almost think, “Well, I bet he leaps out of his wheelchair and jumps into bed when he gets home in the evening.” And obviously you think, I only wish I could. 

 

People felt there also needed to be more awareness and sensitivity amongst health and social care staff. Rob said that a representative from the council, who came to assess his new needs, only addressed his wife and not him. Raymond was “livid” when he felt a doctor pigeon-holed him based on the scores of his tests to assess how much his brain injury had affected his ability to understand and process information.
 

Adrian said that before his injury he would have assumed that brain injury meant that people...

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Age at interview: 42
Sex: Male
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Do you think you had any preconceptions about what survivors of brain injury were like before you had your injury?
 
I guess yes, I would guess straight away they’re in a wheelchair, whereas I’m not and a lot of people at Headway aren’t. There’s probably a third or half of them that aren’t in wheelchairs. And so you have preset conceptions and you think okay, head injury means this and it doesn’t always mean that. And Headway – say there’s 20 or 30 people in there on a given day – I wouldn’t say there’s, we’re not all the same. We’re not all the same. Our injuries are different in some ways. And it affects us differently in different ways and okay there’s a common thread where memory’s impaired, stamina’s impaired. So by about 3 o’clock for example, one or two people are yawning because they want to get home and get back into routine back home, maybe lie down and take it easy. So there are certain things are the same. But certain things again, as I say at Headway no, no one injury’s the same at Headway, they’re all slightly different. But they are all the same too. They’re the same but they’re different.

 

People varied in whether or not they told other people about their injuries. Some said they didn’t care what other people thought about them and didn’t want to hide their scars (e.g. Daniel) or other injury effects. By telling others they could become more comfortable with the challenges they face, raise public awareness about life-changing injuries, and gain help when they need it. Being open about injuries could be important for people’s identities. One man had told his wife (Interview 24) about his brain injury the first night they met. She said she was surprised, as it wasn’t apparent. DJ said he tells people about his wife’s brain injury, not as if she has a problem, but for information, so they know what to expect of her.
 
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Jack prefers to wear shorts and let other people see his prosthetic leg. In trousers he feels...

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I was asked, "Do you only wear shorts so you can get a seat on the train?" I was like, "No, I wear it because it's the psychological thing". I feel more obvious if I'm trying to hide it. That sounds really paradoxical, but when I'm in trousers I feel like I'm just a guy who walks with a limp. That's how I feel. But if I'm in shorts I feel that I'm not that guy who walks with a limp, I'm this above-knee amputee who's got one of these flash legs and people, rather than say, "Oh why he's walking a bit funny?", they're going to say, "Wow look how he's walking with one of those." So that's the mind-set I've got there, I hate wearing trousers, I actually hate wearing trousers. 
 
And why is it a big thing for you to wear them?
 
Because people can't see my knee. I want people to see it. When I'm in trousers or jeans I'm just someone who walks a bit slower and walks with a limp so people see me as disabled almost. I don't feel disabled when I'm in shorts. I don't feel that way. I feel that people are looking at me and I get glances when I'm in the High Street with my girlfriend or whatever. Every single person that walks past they have a look and I think maybe I thrive on that on some level. My girlfriend thinks I do. She thinks I'm a bit of an attention seeker, but I disagree. I feel that when I'm in shorts and people see this [prosthetic leg] they're not thinking, 'He's disabled,' or, 'Why's he walking funny?' They're thinking, 'Wow, look how he's walking with one of those'. That's how I see it. I don't see it any other way and that's why I wear shorts.

 

Others said they preferred not to tell people about their injuries because of pride or concern it would lead to them being wrongly judged by others. They feared they would be seen as “stupid” (Christopher) or mentally ill (Bridget). This meant that people concealed their injuries from potential employers and people they dated. Jane found moving to London “a gift to be able to start afresh”. Nick Y felt more comfortable hiding his prosthetic leg either under trousers or by wearing a cosmesis (a life-like foam covering). Jane and Bridget liked to conceal their brain injuries and pretend they didn’t have them. Being able to hide their injury was a marker of how well people felt they had recovered. Wesley said he didn’t go out of his way to tell people because he wanted his life “back to normal”.
 

Bridget didn’t tell people she dated about her brain injury because it may have given them a bad...

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Age at interview: 56
Sex: Female
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I think the reason was that I suppose I want people to like me for who I am now and not… And I don’t want anyone to have any preconceptions about; oh she’s got a brain injury. I think, if in the internet dating, you would hardly put it on anyway, but if I put, you know, I’d been in an accident and had a brain injury, I don’t think people would have wanted to see me. So, as far as I was concerned that was a dating issue really. I don’t think people would want to see you. And once I’d seen him a few times I suppose I just, I didn’t want it to go on forever, which I could have done, well I couldn’t have done, but I just felt I wanted to get to a stage where we both wanted to see each other still. So... For it not to be an issue really.
 
Right. You said there that you could have hidden it for a long time and then you said but actually I couldn’t. Do you think that it would become obvious to somebody?
 
No. But I think once we’d become more friends, more boyfriend/girlfriend he would have met my friends and they all knew. So, it wouldn’t have, I wouldn’t have done it.
 
Hm. Yeah.
 
Plus, I mean there are things like hitting my head on the cupboard in the kitchen and you know, not remembering where things are, where the grater is or something like that, which would have become, particularly irritating I think.

 

 
Sometimes people said they felt ashamed of their injury and its effects, or they didn’t want other people to know they were responsible for causing it. But hiding their injuries can be problematic because people can miss out on the support they need. Raymond said that he didn’t tell colleagues at work about his injury and because they were unaware of the problems he was dealing with, they didn’t make allowances for him. When he eventually told them, they were supportive.

Last reviewed October 2015. 

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