I have spent many days of my life, since the age of 16, sitting around committee room tables, engaging with others on what could be regarded as an equal basis, often coming up with all the good ideas or saying what everyone else was thinking but too frightened to say. The only problem with this idyllic picture of that while everyone else around the table was getting paid five or six figured salaries to be there as professionals, I was being paid nothing other than my travel expenses as a service user.
When I was younger I assumed everyone on these committees had the same wish as myself to improve the lives of disabled people, or whoever we were discussing, and then I realised it was just a job to many of them and more upsetting, some were sucking up my ideas and solutions to their problems, simply so they could do what they were supposedly paid for, solely with the aim of getting a better job in the not near distant future. I then understood the whole true inequality of the situation.
If I was paid what I was really worth, in relation to my peers as well as my expertise and experience, I would be on a six figure salary and living very comfortably indeed. But as an self-employed disability issues trouble shooter, prepared to tackle the issues no one else can, I have found it very difficult to be taken seriously, yet alone be paid. At almost aged 40, I now have the creditability of an experienced consultant, but simply because I am disabled, people expect me to work for free. Everyone loves what I do and happy to pat me on the back, but still find it odd I am expecting to be paid for my work, just like anyone else. I have of course been paid for work I have done, but it remains a time consuming exercise to find people willing to pay me, filled with too many false promises.
The problem is many charities, including one supposedly led by disabled people, have done well in portraying disabled people as unable to work, unless it is 'supported employment', which is being underpaid because it is seen as therapy, or volunteering. So many disabled people think they can volunteer but do not understand this means they can therefore get paid for working. At the same time, councils and other bodies have realised they can used the political correct notion of user involvement to basically get disabled people, who clearly have nothing better to do all day, to do their job for them as volunteers.
There is a place for volunteering as a stepping stone into paid employment, but when it is used by organisations simply to save money, then there is a problem. The government is also making things worse with the idea we need more volunteers (just to save money) with the appalling idea of Big Society, providing organisations with another excuse not to pay disabled people for the work they do, demonstrating an inexcusable inequality, which has yet to be recognised.
I strongly believe everyone should be properly paid for the work they do, even if it is on an ad-hoc basis, rather than a full-time paid job. How can we help disabled people value themselves when their contributions are not being valued? Why should I have the stresses of no money in the bank when I have helped and continue to help so many organisations and individuals better themselves? It is frustrating because while some organisations are acknowledging they need to pay service users for their time on committees, it is a small token of the amount of what they should be paid. The premise of co-production and partnership working being advocated in health and social care is still very primitive and meaningless if service users are not being adequately paid for their experience and expertise.
With all this said, I acknowledge that my style of working makes me controversial, since you can only say what customers need to hear a few times before it is time to find new work, means I will never have a stable income in the long-term, but it would be so nice if I could get paid more easily for the work I am willing to offer people. But until it is no longer just assumed disabled people will simply volunteer their time, I will have to continue to battle the point that disabled people should not work for free.