From independence to interdependence – the case for reframing disability rights

This week I attended a fascinating presentation by the Framework’s Institute on the influence of ‘frames’ on public policy and the importance of framing in achieving social change.  I’ve been working with these ideas for a few years now in respect of seeking to change the public narrative around human rights, and I recently wrote about it in the context of disability in a blogpost on why we should abandon the language of vulnerability.

I’m particularly interested in applying these approaches in the context of disabled people’s right to independent living.  Doing so requires some serious resources (hint hint to any funders that might happen upon this blogpost) and it takes time and patience.  But I think the rewards could be considerable because I believe progress on independent living has stalled and that the framing of independent living that led to progress in the 90s and 2000s is partly responsible for that.

As Professor Gerard Quinn has noted, disability rights and independent living in particular is proof that individual freedom relies to a considerable extent on social solidarity.  That is to say, the resources that some disabled people require to achieve the support necessary to realise their rights require society as a whole to commit to investing in them.  Achieving such commitment demands a society which prizes values such as universal rights and human welfare.  It also requires a society that is prepared to recognise how structures create and perpetuate disadvantage and one which is committed to addressing such disadvantage.

Yet we seem increasingly to live in a society which prizes individualism over any notion of common goods, which regards social and economic disadvantage to be the result of individual choices rather than structural barriers, and which is less and less willing to commit public resources to social welfare, save to care for ‘the most vulnerable.’

These dominant values undermine the ability of disability rights campaigners to achieve their goals in two ways. Firstly, because they contribute to the idea that certain areas of public spending are intrinsically undesirable. Hence social security cannot be discussed outside the frame of ‘welfare reform’, the sole objective which is to reduce the numbers receiving assistance from the State.  Second, because the only way to maintain legitimacy in this welfare frame and to avoid the axe falling is to plead vulnerability – a lack of agency and productive value.

These are the things in what the Frameworks Institute refers to as ‘the swamp’ – the dominant public values and frames which we must carefully navigate in our journey towards our goals.

And as I sat and listened yesterday it occurred to me that it was not only some welfare campaigners emphasising vulnerability who are falling pray to what lurks in the swamp.  Those who have campaigned for independent living have often placed most emphasis on individual autonomy and the idea of the ‘rational actor’ to pursue reforms such as direct payments and individual budgets.  This makes sense as a vehicle for levering power away from professionals and public bodies.  But it draws on the same values of individualism and the notion that we alone are responsible for our lot in life that underpins declining public support for spending on social security and public services.

Moreover, I fear it remains deeply challenging conceptually and practically for many people, including policy makers, to reconcile the idea of relying on State assistance while ‘living independently.’  This is especially so when the very idea of ‘dependency’ is regarded as being as great a moral evil as hunger.  Hence we see progress on ‘choice and control’ in the Care Act 2014, yet fewer and fewer people can access any support.   We see Disability Living Allowance replaced with the Personal Independence Payment, with an explicit policy objective of decreasing the number of claimants by 20%.

What I say here should not be misconstrued as an argument against the promotion of choice and control, direct payments, personal budgets and the like.  I am also aware that campaigners will say that the independent living movement itself was rooted in communitarian vision.  Yet the very concept of independence and the manner in which these ideas have found currency in public policy over the past 20 years seem to me to have helped reenforce the idealised notion of personal freedom as the atomised individual, unencumbered by any ties to his or her community – independence as self-sufficiency.

Of course this notion of freedom is a fiction for all of us.  We lead interdependent lives.  Our freedoms rely on functioning infrastructure, laws and regulations and common standards of behaviour.  Cognitive science, psychiatry and philosophy all now point towards the idea of autonomy as ‘relational’ and question the very concept of free will.  No man or woman is an island.

It strikes me that for ‘independent living’ to have a future, it needs to be recast as community living, or such like: a reframing that captures the notion of interdependence, of relationships and recriprocity, of investment and return.  It requires a compelling narrative that persuasively conveys why an investment in disabled people’s right to choice, control and participation is an investment not just in individual rights but in the common good.

I hope I’ll find the opportunity to take this thinking forward and I really welcome others thoughts and to hear from anyone interested in being involved.