Not letting a serious crisis go to waste

Our work brings the voice of people with intellectual disabilities and their families where decisions about their future are made. This has always been incredibly important. It is even more so with the Covid pandemic drastic impact on their rights and lives. Being visible and vocal on issues directly affecting millions of people requires your...

Not letting a serious crisis go to waste
etr The economic crisis means that
countries have problems with money.Many governments decided to spend less money on helping people.This makes it harder for people with disabilities to use their rights.But the crisis can also be a chance for governments
to find better ways of helping people with disabilities.


“You never let a serious crisis go to waste. And what I mean by that is it’s an opportunity to do things you think you could not do before.”

Rahm Emanuel , ex-Chief of Staff to President Barack Obama

Given the eye-watering austerity measures in most Member States it may seem implausible to suggest that the crisis facing the European Union could present opportunities for disability rights.  But the reality is that while austerity presents many challenges in pursuing a progressive disability rights agenda, the crisis itself has not involved a dismantling of a well-established infrastructure of support for choice, control and full participation.  This is because across most of Europe such approaches were in their infancy and rarely was public policy and spending in alignment with the principles and goals of the UN Convention on the Rights of Persons with Disabilities.  This is not just a European weakness. As the US National Disability Council noted in 2011 “public policy remains entrenched in the 1960s-era all-or-nothing approach to serving people with disabilities, in which a person must demonstrate inability to be productive to be deemed eligible for critically important supports.” Such welfare states compensate people for their social and economic exclusion – a safety net – they do not typically strive to fix it – an investment.

Writing in 1990, Mike Oliver – widely credited as the academic who framed ‘the social model of disability’- reflecting on disability rights advocacy in the UK noted: “It is perhaps ironic that many of us spent the 1970s criticising the welfare state, only to find that these arguments were built upon and taken much further by a government determined to reduce state expenditure. Consequently we spent the 1980s defending what we had previously attacked. In sum, we defended the indefensible and I do not propose to spend the 1990s doing the same.” Likewise, in 2013 a great deal of the energy of disability rights advocates is being spent defending, or imagining a future return to, the welfare states of old.  Some will argue that such conservationism is the only sensible response. Yet this is to stick our heads in the sand. The challenging reality is that austerity is not a short term aberration following which things will return to ‘business as usual’. We face a ‘new normal’ and we have no choice but to seek to reimagine disability rights for the days ahead if we wish to continue to make progress.

The opportunities to do so arise from the fact that the crisis facing Western democracies was and is not only economic in character.  It is equally a crisis of old assumptions and ways of doing things now Europe faces competition from the emerging economies of Asia and South America, a crisis of the European social model and post war welfare states in the face of ageing populations, a crisis of democracy with declining engagement in elections and membership of political parties and a crisis of trust in the institutions – democratic bodies, businesses, the media – where power is concentrated and which have been revealed as sometimes lacking integrity or strong ethics.  It is also a social crisis with the potential either to bring people together to forge new ways to work for the common good, or to push people apart, leaving space for incivility and extremism.   All of these crises are opening up opportunities to seek to do what we were unable to do before because each has created the spur for deep reflection and the search for new ideas and answers.  As the British disability rights activist Jenny Morris has argued “it’s no good continuing to fight our battles within the context of the intellectual and political space which the disability movement has very effectively carved out over the last 20-30 years. Instead we have to carry those concepts and ideas into the wider arena of not only social policy but also economic policy.”  Disabled people and their organisations have much to offer these wider debates and it is through doing so that I believe there is a significant opportunity to position the ideas that are central to disability rights not as problems not-yet-fixed or as aspirations from a by-gone era, but as fresh solutions for the days ahead.

In my view, the UNCRPD challenges us to shift from a social welfare approach to a human development approach to social policy, and from the idea that ‘every man is an island’ to an understanding of people’s lives in the context of their existing or potential relationships and personal networks.  Embracing this understanding would herald a series of profound changes in law, policy and practice.  Compensatory welfare states would be replaced with capabilities-building social investment states which nurture individual agency and which through doing so harness the innovations of individuals and their appointed advocates to generate new solutions. Power would be devolved to people to self-direct their own support in order to be the author of their own lives. We would rid ourselves of the wasteful bureaucracy and fragmentation which plagues many disabled people’s efforts to lead an ordinary life by re-purposing and then integrating health, social care, benefits and employment support around the individual unified ‘access to living’ schemes.  A decisive shift from the high costs and perverse incentives imposed by the liability-driven culture of adult safeguarding would give way to a liberating model of ‘supported risk taking.’

Focusing on the rights of disabled people to ‘be in the world’ challenges us to focus not only on closing down oppressive institutions, but on how to open up liberating communities.  It requires us to think beyond the repeal of plenary guardianship laws to consider how concerted social action might empower people to exercise and maintain capacity.   It requires us to think not just about the nature of transactions between individuals and services, but about how people can enter, contribute to and draw from the networks of relationships around them.  Such thinking can be glimpsed in the most progressive approaches to supported decision making, such as Representation Agreements in British Columbia or the Indian Persons with Disabilities Act and in emerging thinking regarding the right to live independently and to be included in the community such as in the Scotland Self-Directed Support Act 2013.

These glimpses of promising practice have yet to be fully realised and that is precisely why they are not victims of the crisis.  Instead, they provide a plausible way forward, via which the pursuit of disabled people’s rights to full participation can be allied to the search for more effective and sustainable ways to draw upon and make good use the full range of resources around us.

Most importantly of all, such thinking helps to make hope possible rather than despair convincing.

Our work brings the voice of people with intellectual disabilities and their families where decisions about their future are made.

This has always been incredibly important. It is even more so with the Covid pandemic drastic impact on their rights and lives.

Being visible and vocal on issues directly affecting millions of people requires your support. 

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