May Blog Post: Towards a new narrative on Independent Living

Neil Crowther

Advocates for action on early childhood development in the USA had for years and with little success framed their case in terms of the vulnerability of the children they cared about and the damaging impact of stress in early childhood on their lives. Eventually they came to be in touch with the Frameworks Institute, an organization dedicated to ‘communications research and practice that pays attention to the public’s deeply held worldviews and widely held assumptions.’ The research Frameworks carries out allows it ‘to test and validate, through different disciplines, both the negative frames and the potential positive reframes that can further an issue’s salience.’ Through such research Frameworks discovered two deeply challenging things:


• The frame of ‘vulnerability’ not only didn’t help advance their advocacy aims it actually depressed support for their goals

• Most Americans take the view that ‘what doesn’t kill you is good for you’ and hence don’t regard stress as inherently problematic


They then went on to develop a new narrative, again employing in depth research to determine the most effective way to frame their advocacy. Instead of emphasizing the vulnerability of the children they cared about the evidence told them to focus on the impact of stress in childhood on prosperity and in order to get around antipathy to ‘stress’ they came up with the notion of ‘toxic stress’. A decade on and ‘toxic stress’ now frames debate around early childhood development across professions, advocacy and the media in the USA and has begun to transform policy and practice.


I believe the same methodology needs applying to the way we communicate about independent living and disability rights more generally.


The term ‘independent living’ is itself an attempt at reframing, as are associated terms such as ‘personal assistance’ and ‘support’, which through language challenge the common power dynamics of ‘care’ and aim to redirect policy, practice and resources in support of disabled people’s human rights. Yet the very fact that advocates of independent living often feel compelled to qualify their demands by saying ‘It does not necessarily mean living by yourself or fending for yourself’ reveals an acceptance of its inherent fault-line as a frame.


When advocates of independent living use ‘independence’ they are referring to self-governance: to the right to be the author of one’s own life through having sufficient practical and financial support and control over that support. Yet I suspect for most people (including policy makers) ‘independence’ intuitively means self-sufficiency, and is associated with metaphors such as ‘leaving the nest’ or ‘standing on your own two feet.’ Go to a government Minister under pressure from the Treasury to find 40% departmental savings with a demand for ‘independence’ and they will probably thank you for your generosity and understanding. They will then frame cuts to benefits and services as ‘tackling dependency’ and promoting ‘independence.’


Yet we seem devoid of any alternatives but to retreat back into the language of vulnerability: of disabled people as passive victims who are the object of ‘cruel’ policies and ‘under attack.’ Such language has been employed in recent years by those challenging welfare reforms and austerity more generally. Some will argue this is borne of necessity, but that would suggest it is successful in achieving its aims, for which sadly there is little evidence as the recent cut to ESA demonstrates. While my hypothesis requires testing, I believe that as in the USA, the language of vulnerability probably depresses support for what we are striving to achieve. At best it protects inactive benefits and acute social care for a dwindling minority. At worst is conveys ideas of disabled people as lack agency or productive potential, undermining progress on disability rights overall.


What we require then is a narrative that is simultaneously empowering while conveying the need for resources and supports. I don’t know what that narrative will look like. It requires the kind of in depth research carried out by the Frameworks Institute on early childhood development and a host of other topics, including immigration, climate change and criminal justice. I hope that DRILL might support such a body of work. I genuinely believe it could be a game changer.


Blog post by Neil Crowther

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