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.
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.
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?’
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.
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.
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.
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’.
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.