Disabled people’s lost collective voice

Lessons from the past and present lead Peter White to the conclusion that disabled people need a louder voice to secure the future.
Three recent experiences in my job have brought home to me afresh that disabled people need a louder voice.

BBC Radio Four’s series The Reunion brings together major players in news stories of the past, and as a not particularly major player I was invited with some bigger hitters to recall the fight for anti-discrimination legislation back in the nineties. And it was a fight too, with replica buses tossed off Westminster Bridge as a symbol of non-accessible transport, and Parliament Square gridlocked by wheelchairs to give MPs a taste of what it felt like to have your free movement restricted. What struck me most forcefully during that programme was that at a time 20 years on when most disabled people you talk to feel that many of those hard-won rights are now being worn away, or rendered ineffective, where are the equivalent big-hitters and powerful political gestures?

It’s ironic that the recent U-turn on benefit cuts was caused not by benefit forms being hurled into the Thames, or demonstrators abseiling into the Department of Work and Pensions, but by a squabble to the death between two government ministers who apparently can’t stand each other, and government-supporting MPs who realised that juxtaposing cuts to disabled people with tax breaks for the rich was unbelievably politically inept, and liable to be electorally damaging.

I thought I got a bit of a clue to this situation with my second experience. A group of disability charities got together to stage a question-and-answer session between disabled Londoners and four of the mayoral candidates. They asked me to chair it. But, at the risk of biting the hand that fed me (transparency demands me to admit I got paid for the gig), where were the big beasts? Where was the real challenge to the candidates? If that had happened 20 years ago I would, quite rightly, have had a very uncomfortable afternoon. I can think of a dozen people without pausing who would have turned that event into a very challenging hustings indeed. But this, save for a little ineffectual heckling, was stage-managed. Questions were pre-ordained, and the opportunities for spontaneity were scant.

The charities have cleverly manoeuvred themselves back into the position of “spokespeople”, and governments have been happy to let them, until they get too bolshie, that is. In a nineties hustings like that, “permission to speak” would not have been asked for: it would have been demanded, and seized.

Finally, and most significantly, I went to see a woman who is terrified she’s about to lose her 24-hour care package: this, despite the fact that she has very little independent movement, is totally blind and has a substantial hearing loss. She is caught in a pincer movement between a Social Services department that has belatedly realised the implications of the new minimum wage on its ability to pay for a full night-time care and a tax regime that says that even if a carer is prepared to be regarded as self-employed to make themselves affordable, that’s not an option, as they don’t fulfil the self-employment criteria. If Social Services, Department of Health and HMRC can’t sort that out, her only option is to sell her house and pay the cost of 24-hour care until the money runs out, which would be in about three to four years; and then back into institutional care, something she’s been resisting all her life.

If the fifth richest economy in the world can’t sort that out while big companies continue to hide their money overseas, there’s certainly the need for some loud disability voices – more need, even, than 20 years ago.

2 thoughts on “Disabled people’s lost collective voice

  1. UNCRPWD is supposed to champion socioeconomic disability agendas, simply approach the UN Rapporteur on Disability Mainstreaming in support and cooperation of Disability Equity requirements in your country and beyond.
    Also flag DPI simultaneously in anticipation of a favorable response, failing assistance from these international liberation movements need to be exposed in all global media forum’s.
    Please advise accordingly.
    Joseph Williams
    South Africa
    Disabled People South Africa Activist on Disability Equity.

    Like

  2. I was also horrified by the experience at the hustings. I wasn’t sure, at first, whether it was because the room was full of young, politically naïve people, or if, perhaps, these were disabled people whose voices had been suppressed due to institutionalisation, but I was shocked how compliant most people were for the majority of the session. I’m a vintaged hustings attender and was one of those who contributed towards the “little ineffectual heckling” because a) it’s common practice and adds to the atmosphere, and b) most politicians thrive on and relish it, and c) it contributes towards the debating process. I recognise that, if a meeting is to be accessible to all, including those participating through BSL, SSE or via palantypists, then it’s important for one speaker to give way if another (for example, a heckler) wishes to interrupt. I suspect some people hadn’t seen you in action before and failed to recognise your ability to chair such a meeting. Also, i was surprised to see (whilst i was heckling) that I was being given the “evil eye” by some of the young, smartly-dresses non-disabled professionals who stood around the high table and who appeared to stage-manage the affair, held on to and gave out the microphones and who decided which questioner was permitted to speak.

    I was aware that most of the Questions would be pre-ordained (and I’d tried, along with other “activists”, to get some challenging questions considered befotehand). It appears that, primarily, only “users” from the sponsoring charities were chosen to ask the pre-approved and noncontroversial questions.

    You are right, Peter, the opportunities for spontaneity were scant. I’m sorry you may have come in for some criticism, for appearing to condone the whole affair (although, as you were paid to attend, whilst many of us broke a gut to be there, I guess you can afford to take some flack).

    The sponsoring charities do, on the whole, benefit from keeping their “users” passive, compliant and disempowered. The Charity Model of Disability works in favour of the management of the sponsoring charities and their highly-paid, non-disabled management and senior workers would be screwed if empowered disabled people managed to turn these wealthy organisations into DDPLOs (D/deaf & disabled people led organizations).

    The experience at the hustings reinforced in me the belief that the Charity Model of Disability must continue to be challenged and that awareness and adoption of the Social Model of Disability is a powerful and effective way for disabled people to become empowered and gain equality.

    But how are we to achieve that if the media, the BBC and Channel 4 in particular, to use disempowering images and language. (Yup, that’s right, Peter, that includes you!)

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