A question I am often asked is ‘Who looks after you?’, to which my reply is always and simply ‘Me!’. There is this idea that just because I am ‘disabled’, that there is presumably someone in the government, locally or nationally, managing my every move to ensure I am kept safe in a form of social warehousing!
It is true that I am a service user, in that I require the assistance of many government services and funding streams, but this is no different to any other citizen in this country. But I frame myself as a user, and not a passive recipient in the way many people frame the term ‘service user’. I understand, or perhaps rather work on the basis, that you need to fight to receive anything worthwhile in life, and that government services, like any service, should never be fully trusted to deliver what I need and want first time, not without a polite incentive as I kick their butts with a smile.
I often despair when I hear disabled people say “I want to work but the government is not doing enough to get me a job”! Disabled people are not baby chicks chirping in hunger until Mother government feeds them, even chewing their food for them. From my perspective, I see many people with high support needs have the motivation to lead independent lives as far as circumstances allows them, including making a meaningful contribution to society. At the same time, I see people with health conditions, some they appear to self-diagnose themselves, like having anxiety, who seem to use their understanding of the term, disability, as an excuse, sorry, I should say reason, to claim they unable to help themselves, and require the government to help them, but only in the way they have specified, because “they are disabled and have rights”.
The term disability has had a good outing, compared to its previous core term of handicapped, but it is now meaningless. There is not a new term to replace disability because the concept of disability has been so corrupted, I am now almost embarrassed to use it. I have an impairment, cerebral palsy, as well as other impairments, and I have high support needs, but I am unsure if I am disabled anymore.
The term disability has been turned, I believe, into the new term for poverty by welfare and other activists, where the only solution they are willing to understand in terms of overcoming disability, is money and support on their terms, not the government’s. This demand for help from the government, but refusal to take it if it’s the wrong colour, is bizarre. The fact that ‘human rights’ is used to justify framing disability as a form of poverty the government must solve, has played into the Tory’s hands, as they continue to misuse human rights for their welfare agenda.
The real help many sick and disabled people need right now is to be enabled and empowered to understand they are not the property of the government, and they must learn to engage with services as partners, with a level of healthy distrust and understanding that life is generally unfair for everyone, so having to fight for almost everything is the norm. This does not mean we should stop fighting for a better world, but neither should we sit at home simply complaining until the world is perfect, as that is never going to happen.
I refuse to be just a number and a prisoner of the government just because ‘I am disabled’, and my attitude makes me a free person. I merely want other sick and disabled people to escape the chains they have chosen for themselves, and become free to see their full potential as real users of services.