The Unwanted Guests

I try incredibly hard not to air any dirty linen in public, but I am totally sick and tired (no pun intended) of self professed "real disabled people" who insist on patronising, belittling and criticising those disabled through long term illness. Even of those with no disability at all who ruminate and opine on how I should classify myself and what I should be entitled to. So called "experts" covering their enormous prejudice with a fig leaf of academic lexicology.

For decades, thousands of individuals and hundreds of disabled people's organisations (DPOs) have campaigned fiercely and justifiably for the empowerment and inclusion of people with physical impairments. Using the social model of disability that states people are only disabled by the rigidity and stigmas imposed by society rather than the various impairments they live with, this has led to huge improvements in the way people with disabilities live their lives. A focus on independent living and mainstreaming has opened up the world for many who were previously written off.

But in the last few years, those of us most under attack from the current political obsession with "welfare reforms" have found a voice too. We are merely an unwell needle in a haystack of disability, yet it would appear we threaten the old school disproportionately. Concerned laments and wails of outrage ring out each time any of us dare to say anything at all. No matter that our livelihoods are under attack, our homes suddenly insecure, our health threatened still further by ignorant politicians. Should we dare to try to fight for our own survival, we meet a barrage of insults and are told off for "speaking for all disabled people". Which is ironic as that's exactly what those who are most critical  have done for decades.

I've been regularly and insistently assured that the social model of disability applies to me just as it does to those with congenital or physical impairments, yet how does society disabled me? Even if we lived in a utopia of inclusion and acceptance, I'd still vomit on my bosses shoes and spend most of my day in the toilet. An acceptance that there is any medical element at all to any disabilities at all stems from the fierce opposition those with physical disabilities put up to being "medicalised" and dismissed throughout history.

And it is utterly clear that these old schoolers do not want to be associated with us poorly people at all. They will jump up and down in outrage at this, deny it forcefully, but absolutely everything they do and everything they write betrays how they really feel. there have even been discussions about "separating us out" from disabled people and removing entirely the support we rely on if we cannot work in a self-supporting way. They criticise the language we use, the way we perceive ourselves, our symptoms, our fears and our aims. They have called us "fake disabled" "lazy and workshy", some have even accused us of wanting them killed at birth or re-institutionalised. How can there be any kind of sensible debate with accusations like that bouncing around every word we dare to utter?

The simple truth is that we are the first generation to benefit from enormous medical advances that have saved the lives of those who would previously have died young from serious illnesses. But we haven't yet learnt to do it comfortably or adapted to incorporate the skills of those affected. From distancing from us entirely to criticising every word we say, the old schoolers have proved very grudging hosts to this particular party.

But here we are, invited or not and we're here to stay. Over the next few decades, the proportion of those disabled by illness will increase and we will need to find a new discourse to explain our challenges. A post-social model if you will. One that accepts that there is a medical element to some disabilities and it doesn't threaten the whole to acknowledge it. One that faces up to the barely veiled sneering they have approached us with so far and tries to genuinely find ways to move forward. How utterly ironic that those who have fought so hard and so long for inclusion now feel much more comfortable excluding the nasty, untidy impairments that don't quite fit with their view of the world.

If we can't manage to make the transition towards this basic alliance, perhaps the least we could do is stop shooting off on a hair trigger every time someone dares to express their own issues and concerns. Perhaps we can learn that just because one person holds a particular opinion,  they don't speak for anyone else. However, should that opinion become very popular and should many people choose to read those opinions and share them - of their own free will - then all we can do is accept that there really are serious issues that led to them being expressed.