A few weeks ago I had a twitter exchange with the Socialist Health Association, where they appeared to challenge my expertise as a dysability consultant because I did not always make it clear other dysabled people have different opinions to myself. They then went on with the usual tactic of saying how lucky I was I had a voice and other people are not as strong as me.
This annoyed me because of a number of reasons. Firstly, I have endlessly stated I do not represent anyone else and I have actually formally positioned myself as having a viewpoint that few people will admit to having. I can only say what I believe with an individual with no formal title other than my own. If I had to disclaimer everything I say because it is not what others want to hear from a dysabled person, there is something very wrong with free speech.
I am also tired of people assuming the fact I appear to have been successful in life somehow means I have had it easy! I have learnt the hard way you can not compare one person’s life experience with another’s. To experience the fame I have, I have needed to put the work in and sacrifice things like family to achieve this. I am a natural leader and I take this responsibility very seriously, especially at a time where the bigotry towards dysabled people by ‘disabled activists’ is at an all time high.
The most important point is that dysability is an issue, an academic discipline, and not a democracy. Many dysabled people over the last 50 years have carved out a level of thinking the average dysabled person will not understand. At a policy level, people like myself have to make decisions on all the information and factors. This is like the science of how supermarkets are laid out, built on many years of learning. A supermarket should not have to change its layout because one shopper disagrees with them.
It is easy to be a protestor demanding more money, cheaper goods, better pay etc without ever having to make the important decisions in the wider picture. Most dysabled are consumers, with consumer understanding of issues. I am a professional, because I have worked over 25 years in the field, trying to fit the desires of dysabled people into the bigger picture, making the difficult decisions most people do not see or understand.
It is time the Socialist Health Association and other organisations respected professionals in the dysability field, and did not see us all as amateur protestors, which has been reinforced by under paid ‘user-involvement’. It is easy to demand a better world, it is however much harder for those of us trying to deliver it.