In an NUJ report on invisible disabilities I quoted a while back, the responses to the NUJ study made it very clear there is an ‘us’ and a ‘them’. ‘We’ are the people with hidden disabilities. ‘They’ are the people who ‘we’ complain about. Of course, it’s not unreasonable to suggest that this distinction wouldn’t exist if ‘they’ didn’t tend to make ‘us’ feel stigmatised but a creeping realisation has grown in me over the past few years. Most of ‘them’ I’ve encountered haven’t been deliberately cruel. ‘They’ haven’t deliberately patronised or trivialised me. Those people exist but most of ‘them’ just don’t understand ‘us’. ‘They’ don’t understand me but it has to be said that I don’t really understand ‘them’ either. It’s really hard for me to find common ground with ‘them’ in certain basic ways. I don’t understand how ‘they’ have the energy to go to the gym or to networking events before or after work or, for that matter, to even work full time, let alone overtime. I don’t know where ‘they’ find the energy to socialise on a worknight or to do the cleaning in one go. I don’t understand people who think nothing of a long drive or a day out and don’t need to recover from it afterwards. I really don’t get those people. I can’t comprehend the life ‘they’ lead. I find it very difficult to understand what it would be like to live a life free of chronic pain. I have as many words for pain as the proverbial Eskimo has for snow but no real comprehension of what not being in pain is like. I must have known at one point but I’ve long since forgotten.
Even back in the days when the doctors told me there was nothing wrong with me, pain affected my life. It meant that I napped in the afternoons at university and skived off some lectures purely because the theatres were so uncomfortable for me. It influenced my decision not to work in an area of the law which would have been too physically demanding. It meant that shopping trips would get slower and slower as my hips seized up, that friends were trained to look for seats in a pub which were likely to be comfortable for me and that I rarely went to the cinema (it’s now been over 10 years since I went to the cinema, although I have been to the theatre occassionally during that time). It meant that I had to take breaks during driving lessons to get out and move around etc etc. There’s never been a time during my adult life when pain hasn’t been affecting my activities and the decisions I take. All that’s changed is that there are more limits now than there were when I was 18 (half a lifetime ago this month – wow!) and that I’ve accepted that I’m not actually in a ‘normal’ body.
Recognising this is important. It reminds me that it’s unfair of me to get overly frustrated when others can’t understand the impact of pain on my life. I have no real frame of reference for their lives either. For a long time I was doing my best to pretend I was just like them but I wasn’t really. It also made me realise that I have to stop comparing myself to ‘normal’ people and setting standards that I can’t reach. If I need to take holiday time to do chores (or even because I know I’m exhausted and heading for sick time), that’s just the way it is. If I can’t keep up with housework, that’s nobody’s business but mine and I shouldn’t feel ashamed of it. As long as I know I’m doing my personal best, I have to make myself stick to that and not sweat the fact that I can’t do anywhere near everything. Well, I can try not to sweat it. Sometimes it’s hard not to let frustration get the better of me anyway.
For that matter, of course, the nature of different disabilities is such that we experience different disabilities in very different ways. Many of my experiences would be familiar to other people with broadly similar disabilities but there are many other disabilities and my understanding of them is limited by my own experiences in much the same way an able bodied person’s understanding would be.
Of course ‘us’ and ‘them’ is an increasingly politicised distinction and we are now seeing a total failure of empathy being pressed on all disabled people in the political agenda. It’s difficult to put yourself in someone else’s shoes and I’m sure many disabled people have had similar experiences of being patronised or trivialised by people with the best of intentions (and different disabilities result in different responses). That is frustrating but there is a big difference between that and deliberate cruelty and deliberate discrimination. There is a big difference between ignorance and wilful ignorance.
In some contexts like employment, ignorance is unacceptable and has serious implications for the disabled person. Businesses and public bodies are held by the law to a higher standard than individuals. That is very much the case for governments but we have a government which has openly stated that its own wilful ignorance is acceptable. The job of a government is to think through actions before it takes them, even if that often seems laughable in retrospect. It should carry out necessary research to establish the impact of its proposals. When it comes to disabled people it has various obligations, including an obligation to consider whether its proposals put disabled people at a substantial disadvantage. Yet, the Government’s response to the WOW Petition reaching the 10,000 threshold (which is shown on the petition’s page) was that the issues are too complex to carry out a proper impact assessment into the impact of social security reforms on disabled people. It adds that nobody else has done so. Who can, if not the Government? So ‘they’ aren’t even trying. That’s not something ‘we’ can reasonably be expected to just come to terms with. I’ll blog a more detailed reaction to it in the not too distant future I’m sure.