. . . . Is that everyone has different agendas and understandings about care, about what it actually is, what it means, who provides it and who pays for it, and who monitors it, or says it’s okay, and who sanctions when it goes wrong . . . . and before we know it our lives are tied up in red tape, misunderstanding, fatigue and resentment, neglect and abuse.
This is not an extreme description: recent headlines tell these awful stories, whilst proposed solutions – the famous ‘cap’ being the most recent – are unpicked and found wanting. And still the number of older people grows, the number of working age disabled people grows, the number of young disabled people who survive into adulthood grows, and the army of ‘unpaid carers’ gets bigger and bigger. Is there no light at the end of this caring tunnel?
Meanwhile the government, in the guise of austerity measures, is rolling back the welfare state and ‘encouraging’ skiving disabled people to pull their socks up, get a job, and just get on with it.
Anyone can see that a perfect storm is gathering and disaster beckons. What to do?
Two things, easier said than done and both about re-establishing concepts that we thought were reasonably solid but are being gradually dismantled daily. The first is independent living; simply, disabled people supported to live in their homes and contribute to their communities, and resourced to do so. If this were the case there would be no child carers, no ‘unpaid’ carers struggling at home or at work, and an employment and career structure that could be an exemplar for flexibility and work/life balance.
Secondly, a reclaiming of the concept and operation of ‘welfare’, and social security, disgracefully appropriated by this government and used to demonise and disempower disabled people. See Jenny Morris’s excellent paper at http://www.jrf.org.uk/publications/rethinking-disability-policy for an overview.
This is not to devalue or discredit carers, who are often operating under dreadful conditions: rather it is to say that supporting disabled people to be as independent and autonomous as they can be, in an appropriate legislative and welfare framework, will massively reduce the need for ‘care’.
And perhaps we can reclaim the word ‘care’, referring it to a loving reciprocal relationship, as it used to be.
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