I realised a long time ago that no one can properly represent disabled people, a total of 12 million people if we believe the statistics, but this does not stop many people trying. The problem is as I said in a previous article that there is firstly no clear definition of what is a disabled person and secondly, the diversity of impairment is huge and that does not take into account the extremely wide range of backgrounds disabled people have. So I fear when individuals imagine the disabled people they are talking about, they have very specific people in mind rather than the huge totality of disabled people.
The UK has had a large number of national and local ‘user-led’ organisations ‘representing’ disabled people for many years and while I can appreciate the logic of them, I am not sure why a bunch of unelected and often unaccountable people who simply share a political and socially constructed label with me should have the right to dictate and control aspects of my life in terms of being my voice in national and local government policy. The reality is this generation of organisations has moved from being grassroots organisations to simply third sector service providers following the funding opportunities wherever it takes them, simply to keep their paid staff in jobs, moving further away from their original purpose of representing disabled people, assuming that was ever possible.
As a result of the supposed government cuts, there has been a new generation of militant organisations and activists who feel the need to claim they are now the voice of disabled people without question like ‘disabled people against cuts’ and ‘black triangle’. These angry organisations assume if they think it, every disabled person thinks it and they have recently attempted to look credible by publishing a ‘manifesto’, which is a mixture of ideology and demands for things already in place if they bothered to look. This new generation of representatives is focused on a minority of working-aged physically impaired people as well as those with mental health issues, who are most likely to be affected by the cuts, and certainly not representative of those of us who wear bibs.
These ‘grassroot organisations’ are supported by a series of self-styled leaders who feel they have the authority to arrogantly represent all disabled people, like Sue Marsh, without consulting others. And while Sue does indeed have a lot to offer the debate, I just wished she realised the history of disability politics did not start with her, especially considering the way she imposes her natural prejudices and discomforts onto other disabled people. But at least she talks as a disabled person because what is worse is when the non-disabled chief executives of so-called disability charities like Richard Hawkes from Scope, and Clare Pelham from Leonard Cheshire Disability, regularly portray themselves in the mainstream media as the authoritative voice of disabled people as they make wild accusations based on their never ending GCSE level ‘research’. The reality is their only priority is to keep their middle class staff in well paid jobs by ensuring disabled people remain dependent on their services.
I know one of the criticisms often made against myself is that I try to represent all disabled people but this is simply not the case. I am an observer of disability issues and I attempt to help others navigate the complex landscape of issues, needs and opinions. I say ‘some’ or ‘many’ disabled people as loose descriptors as they could refer to any number of people. I do see beyond my own impairment and situation and while others may not agree, I do understand the viewpoint of others, such as why newly impaired people may not like being disabled, but that does not mean I have to agree with them or feel they can not be challenged. This is because I comment on disability issues as an independent individual, something some people find very difficult to understand as they often frown upon my use of ‘I‘ rather than ‘we’.
I do find it strange that many people only frame disabled people in terms of their political status as ‘disabled people’ and fail to see them as diverse individuals who should be seen as ‘individuals’ in terms of their needs, wants, outcomes, desires and opinions. The term disabled people is functionally meaningless as a tool for representing people and it is time everyone was more accurate in who they are talking about, and this may mean we need a whole new language to describe the varying and diverse social and political sub-groupings within disability.
I think if you wish to know what a specific disabled person wants, just ask them in the way you would with anyone else rather than just assuming someone else has the authority to say what they want on their behalf.