Is ‘User Involvement’ used to keep people disempowered?

I have been involved in User Involvement in one way or another for the last 20 years and it is important to say I am not against the principle at all. However, a few weeks ago I briefly saw a photo of a slide of a title of a paper presented somewhere by Peter Beresford, and it suddenly made me realised that the way user involvement is often implemented is a con, simply designed to keep people disempowered.

After 25 years experience in any field, I should be at the top of my game and paid accordingly, but when it comes to dysability, the being paid part is not there. If I was non-dysabled, then certainly the big fat salary would be on the table. But as a dysabled person, I am supposed to feel grateful that I have a voice in issues that affect me.

‘Service Users’ are starting to be paid for their time but getting paid as an ad-hoc contributor is time-consuming and bureaucratic, and most importantly not comparable to my non-dysabled peers. I have sat on too many committees where I have the greatest experience and expertise, but I am the only one not being paid a middle-class salary.

Is user involvement simply tokenistic? By calling us users rather than partners, it is simply a way to drain our expertise from us, often to improve their own career prospects, without paying us? And who is controlling the agenda?

I have reached the conclusion that user involvement is now simply an exercise to disempower us, by ensuring the professionals keep the control. And I fear because ‘user-led’ organisations have carved their survival by paying the user involvement game, reinforcing dysabled people as unpaid experts, they are not the way forward.

Dysabled people can no longer be perceived as the experts simply because they have impairments. I also do not believe anyone can represent ‘all dysabled people’ since it is an issue of understanding, not a democracy. We need dysabled professionals who are experts in dysability issues, and paid properly to convey relevant information to organisations who are required to know about these issues.

Lets move beyond user involvement, and start having professional engagement on dysability issues so those of us who know what we are talking about can be properly paid for our experience and expertise.


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No One Can Represent Disabled People

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.