Before my injury I felt very much a part of society. I had lots of friends and went out socialising an awful lot. Now of course, as we age things change, some people marry and have children and others choose other paths. My life took a major route change when I became a wheelchair user aged 20, in 1978 after a car crash.
Firstly, I had always been an unskilled manual worker. My knowledge of disability was scant. Indeed I don’t think I saw disabled people in any particular way – I just didn’t see or think about them. So then being faced with seeing this person in a mirror who was me – but did not resemble how I defined myself – was very difficult to come to terms with.
Secondly I found that the way people responded to me was different than prior to my injury. People that knew me seemed to feel sorry for me and people that didn’t know me either seemed consumed with interest in terms of why I was a wheelchair user or ignored me entirely. Of course I am generalising here, but the fact remains that interactions with people where my physical presence should not have mattered were different and so it did matter.
Lastly, I couldn’t navigate the physical environment as easily as before. Using a wheelchair in an environment based on the premise that most people walk disabled me and made getting about difficult. Some places were impossible to get into.
Other places were accessible but often access was by unusual means that required negotiation with staff and so access became dependent on either the organisations policies or staff attitudes.
So why anomiepete?
So whereby prior to my injury life had often been spontaneous and access expected, post injury I had to: 1) plan and negotiate to go to places; 2) be much more aware of people’s attitudes and adjust my behaviour (get in their face or gently steer the subject matter to the issue I wanted to discuss); and 3) try to understand my own self loathing.
Of course access has improved in the 36 years I have been a wheelchair user. We now have the Disability Discrimination Act. And I know myself better and accept myself warts and all – and so refute any stigma. But the rather sad fact is that there is a gap between much of society and me caused by physical and social barriers that define me as a special class of person whose needs largely fall outside the expected and accepted. As such I feel and experience a disconnection with non-disabled people. I am estranged from society and do not share its norms.
Emile Durkheim, the French sociologist, introduced the concept of anomie in The Division of Labour in Society, published in 1893. He used the term to describe how changes in society – largely he thought – caused by industrialisation were leading to norms in society (expectations on behaviours) breaking down are confused, unclear or not present. This is of course true for me because my norms of behaviour are built around my impairment and so different from others.
That’s why I chose the name anomiepete – it reflects who I am and how I feel – quite well.