Yesterday, 14th July 2015, I spoke at the Reclaiming Our Futures Alliance conference in Sheffield. The number of people there, and the level of debate and contributions, were a tribute to the growing strength of the disability movement. Here’s the text for the speech I gave at the beginning of the day (what I actually said was a bit shorter than written here).
I’m not going to spend time recapping how awful things are and the impact of recent and forthcoming policies on disabled people. Instead I want to identify some positives, sketch out a few priorities for the disability movement, and at the same time try and identify areas where we might make progress.
So what are the good things we can identify in the political situation that faces us?
Firstly, there is growing and energetic grass roots movement of disabled people which in many ways is bigger and has more potential than the earlier years of the disability movement. Social media is a key factor in this - a tool which we didn’t have in the 1980s and 1990s. This makes communication faster and more far-reaching than we could have dreamt of in those earlier days. It also means that our movement is more inclusive: people who find it difficult to attend meetings or marches, or to be involved in other forms of formal organising, have made some of the most important contributions to recent activism. The Spartacus Network's reports and Catherine Hale’s research on ‘back to work’ programmes and people in the Work Related Activity Group are good examples. And it means that experiences which are by their nature socially isolating are making their voices heard in the public sphere.
Secondly, the impact of government policy on disabled people is much more of a mainstream political issue than it ever was. This is partly because of the disproportionate effect of austerity policies on disabled people but it is also because disability activists have been so prominent in the public debate. The fact that DPAC’s banner was at the front of the Anti-austerity March on June 20th illustrates that disabled people are at the head of the fight against the current government, rather than being on the periphery which is where we have usually been.
Thirdly, social care policy is moving up the political agenda - primarily because of the mounting crisis caused by local government cuts already made and the far worse ones which are about to come. Local authorities (even the Tory ones) are potentially on a collision course with central government, particularly because there are increasing signs of a collapse in the market of private care providers (who can no longer make the kind of profits their shareholders require because of the cuts in local authority social care budgets). Disabled people have won important fights before by making alliances with local government. There is potential for doing this again.
And fourthly, the real world is at odds with the political rhetoric - one key example being the failure to reduce the numbers of people receiving out of work disability and sickness benefits. Over the last 30 years or so governments have brought in new assessment systems, accompanied by a range of threats and promises about stopping people ‘languishing on benefits’ but each time they have failed to significantly reduce the numbers - although in the process of trying they have ruined many people’s lives. All the evidence is that it is the behaviour of employers and what is happening in the wider economy which increases employment rates amongst disabled people - only when employers adapt working conditions, and support people to keep their jobs when they have periods of illness, will we increase employment opportunities. The gap between rhetoric and reality is also created, firstly by an ageing population - people in their 50s are more likely to be unable to work because of ill health - and secondly because the way our economy is run is increasingly bad for people’s health.
In terms of our priorities and where we might make progress, I think the most important thing is first to be clear on what our principles are and to hold fast to these.
In particular, we must not get drawn into using language which is diametrically opposed to disability rights and independent living. For example, we have to resist the term ‘vulnerable’. It’s too easy to use this word in making the case against the devastating impact of cuts in benefits and services. But this kind of language undermines us. It’s part of an agenda which is about separating out the ‘vulnerable’ from the ‘shirkers’, the deserving from the undeserving. Let’s be clear, this rhetoric is a direct consequence of the government’s aim (which was also the aim of the last Labour government) of reducing the amount of money spent on both out of work disability benefits and additional costs benefits like DLA.
It’s a term which is part and parcel of the current government’s aim of a ‘small state’ because it implies that there is this small group of people who are so ill or disabled that they require ‘special’ treatment but everyone else must sink or swim according to their own efforts.
Our resistance to current policies should instead be based on arguments about social justice, about equality, about disabled people aspiring to the same human and civil rights as anyone else. Resistance should not be based on separating out people with the most significant impairments or long-term health conditions and making them into a ‘special case’, to be ‘protected’ by a very basic safety net.
Our resistance should be based on recognition that currently we have the kind of economy which creates low paid, insecure jobs that are bad for people’s health. An economy which creates working conditions that demand a level of fitness and resilience that many, many people do not have. These are mainstream issues in that they are issues which affect a much much wider group of people than those who are identified as ‘disabled’.
Our priority should be to make alliances with those more generally affected by our dysfunctional, unhealthy economy. We should therefore be broadening out disability as an issue rather than making a special case of our so-called ‘vulnerability’.
Really good work has been done by disability activists and others to expose not only the flaws in the Work Capability Assessment but also the inability of private sector organisations to deliver what they promise when they tender for outsourced services. And no doubt there will continue to be such opportunities. But it’s really important that this campaigning puts disability equality principles at its heart. This means showing how the behaviour of employers, and the kinds of low paid, insecure jobs on which our economy relies, create impossible barriers to employment for many people. It means focussing on how the WCA is not even fit for its intended purpose, that sanctions are not only unfair but ineffective, and that so-called employment support programmes are not actually supporting people into employment.
And it means focusing on the failure of current government policy to recognise illness as a barrier to work. This last issue in particular has great potential in building broad alliances and exposing not just the callousness of government policy but also its impracticality. This is a key policy area where we can also demonstrate that policies that work in the real world have to be developed in partnership with people whose lives are affected by them.
The Chancellor’s decision to remove those placed in the Work Related Activity Group from long-term benefit rates and only pay the same rate as Job Seekers Allowances opens up a real campaigning opportunity. This change will not come in until April 2017, and only for new claimants. This gives us time to expose the huge gap between rhetoric and reality - people in the WRA group are disabled, are ill, and are assessed as not currently capable of work. There is considerable lack of understanding about this. Moreover, the Work Programme has proved unable to help more than a small percentage into work - which is not surprising given that it has been developed with no involvement from those with real expertise in what good employment support looks like - disabled people themselves.
This relates to an opportunity which is not just of concern to disabled people but to the majority of the population: how to design and deliver services that are responsive to the wishes of individuals, that are accountable to their users (rather than to shareholders - as in the private sector - or to a professional group whose culture is one of ‘we know what’s best for you’ - as is far too often the case in the public and voluntary sector).
The post-second world war welfare state may have been radical and empowering for its time but its bureaucratic and professionalised way of delivering services and support too often actually disempowered people. Which is why we had to develop direct payments as a way of delivering self-determination for people who need support to go about their daily lives.
Where policy and its implementation is not driven by those who use services you get situations where, for example, employment support services have very poor rates of actually helping people into sustained employment; where people with autism and/or learning disabilities are institutionalised for years in expensive services many miles from their family and friends; where disabled and older people are ‘warehoused’ at home or in residential settings.
As we know, social care is facing a crisis. Crucially, this is affecting a much larger group of people than has been affected by cuts to disability benefits. We need to make alliances with older people and also family carers. There is scope in the context of the campaigning which needs to happen - and will happen - to push our concept of independent living. The original vision which drove the campaign for direct payments may have been subverted into a bureaucratic system of rationing ever-scarcer resources but that doesn’t mean we should abandon the aim of self-determination. It just means we have to be clearer than ever in our demand for control over the support we need to go about our daily lives.
The magnificent fight waged against the closure of the Independent Living Fund has brought into the public spotlight a question that needs to be continually asked of the government: “Are you telling us that our society cannot afford to enable disabled people to have the kind of life, the kinds of opportunities, that non-disabled people take for granted?”. One of our priorities should be to keep asking this question. But we should also broaden it out because it is a question which applies to a much larger group than those who are commonly labelled as ‘disabled’, namely older people, including people with dementias. The cut-backs in local authority budgets mean that increasing numbers of older people, who need support in their daily lives, are imprisoned within their own homes, receiving diminishing levels and quality of support, relying more and more on family, friends and neighbours for the most basic care.
We need to build alliances with organisations representing older people and family carers. And at the same time, seize the opportunity to influence their campaigns with our vision of independent living because this vision applies just as much to older people who need support in their daily lives as they do to the younger disabled people who developed them. And as my generation, which came of age in the 1960s, enters old age I cannot imagine us being willing to put up with the ageism which is at the heart of many of the services on which we will come to rely.
The final point I want to make is that there is scope for both pissing inside the tent as well as outside of it. Successful movements do both. Trying to work with individuals and organisations who do not necessarily share our worldview is frustrating. But it has to be done. We made significant achievements in the past at both national and local government level, sometimes alongside voluntary sector organisations that we had profound disagreements with (even if we had to hold our noses). We need to recognise that there are individuals working within these organisations (and at national and local government level) who we can truly count as our allies. We need to be able to support them: this means recognising the value of what might be called the “pragmatism of small step progress” while not losing touch with our fundamental critique.
In the current political situation, where so much is against us, we do yet have a history of 30 years of disabled people’s struggle to build on. And we have more and more people identifying with that struggle, and more effective ways of organising. The greatest opportunities are created by the ways in which it is now clear that our fight for social justice and a decent quality of life is also at the heart of a broader fight. Remember less than 1 in 4 people voted for the manifesto that this government is currently implementing - and some of the things it is doing weren’t even in their manifesto anyway. That is a significant democratic deficit. It opens up considerable opportunities for exposing the gap between rhetoric and reality, for voicing our vision of how to deliver human and civil rights for disabled people, and for building alliances with the increasing numbers of people affected by this government’s disastrous policies.