Making disabled peoples participation real

Wed,4 June 2014

Chief Executive of DR UK Liz Sayce, replying to Neil Crowther’s blog, says that as well as making short-term plans to stop cuts for disabled people we should also plan to make freedom and participation real.

The blog, “We need to talk about the elephant (trap) in the room”, itself was a response to Tom Shakespeare’s lecture on disability equality at the British Library.

In this talk, the researcher and disability rights advocate Dr Tom Shakespeare considered what it takes to achieve equality for disabled people, in the era of the UN Convention on the Rights of Persons with Disabilities and ‘welfare reform’. He argues that barrier removal and reasonable adjustments make workplaces more accessible, but only if the extra costs which disabled people face are met through state benefits. Because disability is so diverse, ensuring that all disabled people can flourish requires more than simply levelling the playing field. Where next for disability equality?

Neil Crowther is an independent expert on equality and human rights with a particular interest in working to secure the rights of disabled people.

Liz’s comment

“It’s good to read this debate: fantastic thinkers and activists on disability debating crucial issues for our disability rights strategy. We should not get polarised or divided – but we need to have strong debates, because the issues are so important.

I heard Tom’s talk last Friday. It was eloquent and I agree that we need to think beyond only barrier removal. But to my mind a couple of things were missing: a vision of social protection that goes way beyond the welfare state as we have known it, by changing power relationships; and an ambition to transform the world of work so that more people can participate. You can’t cover everything in one talk, but perhaps in an ongoing debate we can.

On social protection – when cuts put our backs against the wall, people rightly fight to protect our earlier gains; but we don’t in truth just want to keep what we have had, to get boxed in as ‘vulnerable’, in need of help and safeguarding. We want completely different uses of public money – for instance, a massive expansion of peer support and an overthrow of risk averse health and social care policies that restrict independent living.

Safeguarding all too often acts against choice and control, the use of co-ercive powers under mental health law is growing inexorably, and as Shami Chakrabarti put it last night ‘there are many prisoners who are not convicted’ in care homes, psychiatric institutions and the like. So we don’t want to sustain these disempowering health and social services.

Tom, you argued that the disability community’s proposals for personalised services had allowed government to dismantle provision. The same arguments were made years ago in relation to community care and de-institutionalisation. People said the government had seized the rhetoric of radicals and used it to justify cost-cutting. In that case, de-institutionalisation, even accompanied by some cost-cutting, was on balance a positive – all the research shows people had better lives after leaving institutions, and even if they encountered difficulties they didn’t want to go back. The current position is complicated – but we need both to fight to protect resources and to campaign for forms of support and ‘social protection’ that offer freedom and the opportunity to participate in families, communities, employment and more. If we take a relational approach, as you argue in your book, it needs to be one that accords power to the person making use of support.

On employment, if the DRC (as you mention above) can accommodate someone living with a fluctuating mental health challenge, then so can other employers – and by the way, I was there, and we accommodated people so they could do fantastic work, not out of some ideological whim. It worked there and could work elsewhere – particularly if government made some simple changes to Access to Work and statutory sick pay to remove disincentives for employers taking someone on with a fluctuating condition (as recommended in several reviews to Government including the Perkins review).

To be clear, this is not to argue that everyone can work, still less that the ridiculous processes of the :Work Capability Assessment and sanctions regime are justified – they are counter-productive, cause fear that is the exact opposite of what people need when they try something new, are based on no evidence, are not fit for purpose, are unfair (I could go on). But we should not lose our vision that the world of work could change so that more disabled people could take part.

For instance, for some jobs annualised hours can work; or groups of people living with fluctuating conditions can work together on contracts and cover for each other. It would not be beyond the bounds of possibility to incentivise and support this kind of development. If we stop at the argument that ‘some people can’t work because of their impairment’, we risk essentialising the problem and de-contextualising it. Let’s not forget that it used to be obvious in society that there were many jobs women could not do. We hope that in future we will be surprised that we used to think people with fluctuating conditions couldn’t work – because by then we will have improved the way we organise work, so people can work when they are able to.

We need short-term plans to stop cuts alongside plans to make freedom and participation real.”