What will it take to celebrate disability rights again?

Liz Sayce argues for some winnable campaign targets – on which we can make progress even in hard times. Our vision must go beyond campaigning only to preserve what we have. We need to be creative and work for our positive vision for equality, freedom and opportunity.

Back in the heady days of the noughties (the 2000s) we used to celebrate achievements on disability rights with what now seems amazing regularity. I remember cakes shaped like Disability Discrimination Act Codes of Practice, and toasts to everything from new rights legislation and landmark legal cases (remember Ryanair?) to formal investigations that made far-reaching recommendations to reduce inequalities in health, inaccessible websites and more. Year after year, the celebrations flowed - with legislation covering education in 2001,  physical features (2004), better coverage for people with cancer, MS and mental health conditions (2005), a positive public sector duty (2006), the UN Convention (2009) …….. And in 2010 we achieved a ban on employers asking irrelevant pre-employment questions about your health or disability (questions that so often leave people open to discrimination).

Gradually we saw some service providers, employers and education providers change their practices – sometimes without anyone going near the courtroom. The demands of disabled citizens, positive guidance, discussion, awareness and support began to change behaviour.

Of course it wasn’t all great:

·        After government brought in community treatment orders in 2008, the number of uses per year of compulsory detention or treatment under mental health law went up from 44,000 to nearly 53,000 – in just 4 years. This use of compulsion - on people who have mental capacity - is a major human rights issue of our time.

·        Although disabled people’s definition of independent living was adopted by government in the Life Chances report of 2004, in practice some people (and not only mental health service users) experienced diminishing choice and control, or outright abuse.

·        Recent statistics tell awful stories of poverty: disabled people are less likely to afford fruit and vegetables than non-disabled people, less likely to be able to heat a child’s room. This is shocking.

Still, over that same decade:

·        The ‘employment gap’ between disabled and non-disabled people went down by 10%

·        The gap narrowed significantly between disabled and non-disabled young people without level 3 qualifications (like A levels).

·        The proportion of disabled people reporting transport difficulties went down (by 5% - OK it’s a start) and

·        Disabled people reported fewer barriers to accessing goods and services.

There are still gaping gaps of inequality: the employment gap, for instance, is 30%, representing 2 million disabled people who could be in work if only the gap was nil.

But we did make some progress towards equality.

There are a few things to learn from these (modest) successes. The disability sector worked together – through Rights Now in the 1990s, with the Disability Rights Commission in the 2000s. We focused on changing behaviour not attitudes alone. We drew on evidence of what  worked: for instance, contact between disabled people and decision makers (since contact on at least equal terms  - preferably leadership by disabled people - changes attitudes and behaviour more than any amount of information); and we addressed the power that underpins discrimination, through legislation, systemic investigations and positive, proactive duties.

So what should we do next?

So far in the ‘teens’ most of our high profile campaigning has aimed to halt particular policy changes. We have tried by hook or by crook to protect our hard won progress: to stop attacks on independent living, to preserve a benefits system that recognises the extra costs of impairment. We have had some small successes. We stopped people living in residential care from losing the mobility component of Disability Living Allowance; we have delayed the full introduction of PIP till 2015, just after the next general election (which gives us a window to convince the political parties not to implement it at all…..). From the Hardest Hit to Spartacus and the actions of Disabled People’s Organisations, a big focus has been on preserving the gains of previous years.

With an eye on the future, we know that is important – but not enough.

On the quiet we have seen a few ‘newer’ changes in the 2010s as well:

·        Cross-party agreement to strip away archaic laws that debar people with mental health conditions from being company directors, jurors and MPs

·        A fund to enable more disabled people to stand for Parliament

·        Planned roll-out of personal health budgets, which could give people living with long-term health conditions more control over our lives, more access to peer support

·        A commitment to improve and expand Access to Work, including for entrepreneurs and people doing work experience.

Looking ahead to 2018, many economists predict continuing depressing news. None of the political parties is promising increased public spending – indeed they often vie with each other to use the hated ‘skiver and striver’ rhetoric to justify reductions. Whoever wins the 2015 election will be tempted to stick with planned spending constraints.

In this context we need to be smart. If our main strategy is to preserve what we have, we risk forgetting that what we have is completely inadequate. In truth we want something better – much better – and parts of it might be achievable even in hard times. For instance:

·        We want to transform services to suit our lives. We have the expertise to propose new independent living models that give us more control over how we choose to live with our impairment or health condition, that offer collective peer support – and that are cost effective. We do not want a professionally dominated health service, overly focused on cure, that offers little for the older and disabled people living with our long-term conditions. We want support across social and long-term health care, employment and education. This could be winnable

·        We do not want only to preserve current (sadly poverty-level) benefits to disabled people who are out of work; we want education, skills, employment, transport and related policies that enable far more disabled people to get ‘good work’, that is to say work with some prospects. Britain’s growth depends on upskilling its population. We can campaign for more access to apprenticeships, for Access to Work support for every single route into employment (all types of work experience, internship and business start-up), and for skills support integrated into the work of Disability Employment Advisors. This could be winnable

·        Disabled people face risk-averse, bureaucratic processes in dealing with the state. In some places though, simply making monitoring of direct payments less frequent has saved millions that have been ploughed back into services. We could campaign to stop (for instance) weekly returns on Access to Work and other bureaucratic nonsense. This would benefit disabled people and government – and is winnable.

Neil Crowther has recently proposed campaigning for an Independent Living Bill – which could help embed some of the ideas above.

As we move towards the 2015 election, we should unite behind common positive objectives. If we don’t there are 2 big risks. Firstly we will miss some opportunities – and even in tough times there are opportunities (remember getting Direct Payments law in the 1990s?). And secondly if our priorities rely on increased public expenditure we may find we win the occasional battle – but lose the war, as government of whatever persuasion continues to squeeze spending. We have already seen in Germany the horrendous sight of older people being shipped out to other countries where care is cheaper. We should now show the alternative: promoting and testing models of support led by disabled people, that sustain and build resilience and social networks and show how to use public money better. To my mind the war is about transforming the position of disabled people in society. Just trying to preserve what we have is not enough.

We need to think carefully about our alliances. Think of the people who will benefit from an independent living transformation – for a start, the citizen power of older and disabled people and our relatives, and employers (who want people who acquire impairments – and relatives/carers - to continue to work).  This may be more important than allying ourselves with (for instance) professional health and social care groups – who may seek to protect their particular profession’s position.

We simply want the freedom to live independently; and the opportunity to participate. And we can build public support. With a public that believes (whatever the evidence) that spending has been too lavish, it is hard to build support for keeping the status quo. But campaigning for the freedom and opportunity to contribute shows how the paralympic effect can be extended – by creating supports on our own terms that enable independent living for the many, not the few.

And then perhaps we can start to have the occasional celebration – of the inventiveness of disabled people to make a difference even in hard times.