Talking about independent living

Non-disabled people don’t talk about their ‘right to live independently and to be included in the community’ just as non-LGBT+ people have never talked about civil rights to same sex partnerships. And so just as the latter came to learn to talk instead about ‘marriage equality’ and to centre their messages not on rights, but on love, commitment and family, so it would be wise for those campaigning for independent living to find a way to speak to shared values and universal aspirations. That’s what the vision and narrative that has been developed by #socialcarefuture aims to do:

All of the elements of Article 19 of the UN Convention on the Rights of Persons with Disabilities are here – living in and being part of the community with choice and control over our lives. But it is written in a way that is wholly relatable and avoids the common trap of ‘othering’ by not addressing the message at or about older and disabled people at the outset, but to everyone.

Our narrative goes on to explain how ‘social care’ needs to work to make this vision real. This again speaks to Article 19 CRPD, rendering Article 19 (b) and (c) in service to Article 19 (a): people drawing on a range of supports and relationships to lead the life they want to lead, as part of their community.

We do talk about ‘social care’ in this work and we have thought a lot about this. I was confronted with a similar question when working on a project to try and shift public attitudes to human rights. Given people support the underlying principles, wouldn’t it be better to talk about and deepen support for those rather than use the increasingly toxic words ‘human rights’? The problem is, human rights is only ever then talked about in connection with terrorism or criminality. Similarly, while what we ultimately want may lie beyond ‘social care’ as it is traditionally conceived, our agenda is unlikely to get anywhere unless we redirect the resources and reform the law and practices associated with it. So we’ve used the language of social care to make it clear to our audience what it is we want to change and who needs to change.

Moreover, people will hopefully notice that we do not talk about people being ‘cared for’ but instead use the word ‘support’. This was a word that emerged without our prompting during the qualitative stages of our public audience research and offers the most consistent way to talk about what a reformed approach to ‘social care’ should do if aligned to independent living – as providing the means to the end of living the life people want to lead. However, it is still possible to use the word ‘care’ or ‘caring’ not as a verb, but as a solidarity value e.g. ‘in communities where we care about one another.’ One could also say ‘where we support one another’ or as we do ‘look out for one another’. This is important, as too often the word ‘independence’ triggers associations of self sufficiency and atomised lives, rather than being able to pursue our goals because of the strength of our social bonds.

This is a framework for communicating, not a script. But I feel it offers a way to talk about independent living that will resonate far more widely – just as marriage equality has done – and in dong so to open up the space for us to put forward ideas about law reform, funding, commissioning and practice change that have too often eluded us.

You can read the research and guidance here:

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