Independent living – making the future together

By Martin Routledge

These are incredibly worrying times for disabled people.  Progress towards independent living is at greater risk than it has been for decades. People who care about this must act, but what to do?

Some questions I continually ask myself are: Why are the conditions not in place to support independent living? Why have attempts at legislation failed? Why does no political party properly support independent living? The answers must primarily be small “p” political.  Disability remains marginal in national and local political narratives – it is not raised in most canvassing discussions on the door step at elections. It is not the subject of heated discussions in the café or pub. Disabled people’s organisations  remain marginal in most communities. Opinion polls and attitude surveys show us that the population doesn’t buy the social model yet (to say the least)  and is much more supportive of disabled people in some circumstances than others – mostly people considered “deserving” and even then quite conditionally.  Responses to disabled people tend to prioritise institutional and professional “solutions”. Attempts to “personalise” public services though worthwhile and potentially positive are inevitably  limited in scope and run up against system forces and cultures that limit power transfers. These are not the conditions which will easily generate national and local action to achieve independent living.

How can this be changed and how quickly? These are tough questions.  Given the current gap between public, political and policy positions and the achievement of independent living, strategic shifts are hard to achieve. Power is dispersed. There isn’t a single actor (usually we think of central government) that could just adjust its behaviour and bring independent living about. We need to think about  a combination of tactical and strategic activities running in parallel that might achieve positive short term developments which can support and link with more major shifts. We will need to be principled, pragmatic and opportunistic all at the same time.  The threats currently faced can provide energy, determination and drive the construction of alliances.

The political activity and change efforts I’ve been involved in and observed over the years suggest that there will be a need for a number of linked strategies carried out by a wide range of people, sometimes tightly, sometimes loosely connected. These groups won’t always find it easy to agree or co-operate with each other and will differ on significant things.  Alliances will be complex. Some of us might not be accepted as allies by others and sometimes some of us should get out of the way of others. It will be important though to generate a series of both specific and broader activities that move the position on to build the right conditions as quickly as possible. Some of these (not necessarily delivered in rational or incremental order) will be:

  • Development of strong and powerfully communicated narratives that demonstrate why independent living is the right thing for disabled people and society. Communicating the social model in terms which are meaningful to a range of societal groups.
  • Disabled people develop a set of key principles and elements in the form of a new or adapted IL statement/agreement that could get wide sign up while not diluting core principles
  • Campaigns – Some targeted against policies that undermine IL and especially that can resonate as unfair with the wider public or key influencing groups . Also positive campaigns  using the strong clear narratives which can engage key groups
  • Development of exemplars and persuasive examples of independent living in practice based upon the narratives  – where possible across whole localities and systems. Taking advantage of developments  such as local health and well-being boards  to get independent living supported within strategies and priorities (directly where possible, indirectly where necessary)
  • Find ways to generate investment in national and local leadership (in its broad sense). Equipping people will the skills and networks to generate positive activity and building peer connections.  Where possible link disabled leaders and progressive allies in public services at local level to support exemplar development
  • Support local groups access to the information and advice that can assist their efforts to defend and extend elements of independent living locally
  • Lobby political parties nationally on key policy positions – tactical and strategic lobbying on specific and general policy. Build towards key positions in party manifestos
  • Strategic litigation – using existing, or forthcoming legislation to help build case law, defend existing rights being denied in practice
  • Enrolling of key groups and organisations that influence systems and practices – looking for “convergence” with professional and provider bodies, academics, journalists etc. This might include full sign up to IL and associated action or it might be partial and incremental – to be built upon. Use this to get IL or key elements into important policies, publications, stories, protocols, work-streams etc
  • Entryism – getting people who are strongly sympathetic to IL and who can influence positive strategic or tactical action into key roles in national and local government and other organisations. These might be permanent or temporary
  • Legislation. At some point national legislation, linked to international law, which enshrines enforceable rights to IL. On the way to this, more tactical helpful pieces of IL specific legislation, other legislation that helps shifts towards IL (or at least doesn’t create barriers).

How might all this activity be co-ordinated, driven, supported – is this even possible or sensible? It strikes me that some form of organisation is definitely needed. As a minimum I would suggest a coalition of disabled leaders and their organisations  to generate a core mission and agree key activities in a plan. Such a coalition could be supported by a wide range of other groups and individuals based around sign up to the mission and accepting the leadership of the coalition. These groups and individuals could provide  a range of supports: resources, skills, specialist advice, connections, local opportunities etc. In Control are very keen to play whatever role we can to support such a development.

 About the author

Martin Routledge is Head of Operations for In Control. Before joining In Control most of his work has been with local and central government. His main interest has been in efforts to shift policy and delivery of public services in directions that support independent living and inclusion – there is a long way to go!

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