Another brilliant blog post from Mark Neary today on the right to sleep, not to minor respite from extreme and persistent exhaustion. Imagine if you will, those of you who are parents, that the sleep patterns of the first few weeks of your child’s life continued in perpetuity. That’s a reality for many people supporting family members in Britain.
As usual Mark’s personal accounts expose the dishonest, patronising and frankly abusive bullshit not just of national and local government and our politicians, but of many charities who profess to exist to advance the interests of disabled people and their families.
Informal care-giving is over celebrated and massively unsustainably over-relied on. Yet so twisted has the public narrative around care become that those allegedly standing up for ‘family carers’ frame common experiences such as a level of sleep deprivation that would shame the interrogators at CIA blackspots, people being unable to hold down their job and living in poverty as a consequence, people suffering isolation, stress and depression, family breakdown, child labour and a situation putting not only those providing support but those receiving it at risk not as a national scandal, but as a heroic, irreplaceable £119 Billion ‘saving’ to the State. One charity’s big answer to this is to encourage ‘carers’ to make sure they have a good breakfast…
Without a change in the narrative, this over-reliance is set only to become greater. Public spending cuts are squeezing services while demand is growing exponentially, due both to our ageing society and increasing numbers of disabled people with so called ‘complex needs’ reaching adulthood. Who or what is going to fill this ever yawning gap?
Our starting point has, I believe, to be an abandonment of the ‘carers’ & ‘cared for’ labels. We need instead to talk about and focus on people’s right to good, authentic and sustainable relationships as a matter of equality and human rights. My thinking here is influenced by a piece I read by the Swedish Historian Lars Tragardh regarding the ethic underpinning the Swedish Welfare State:
‘…authentic human relationships are possible only between autonomous and equal individuals. in Sweden this ethos informs society as a whole. Despite its traditional image as a collectivist social democracy, comparative data from the World Values Survey suggests that Sweden is the most individualistic society in the world. Individual taxation of spouses has promoted female labour participation; universal daycare makes it possible for all parents – read women – to work; student loans are offered to everyone without means-testing; a strong emphasis on children’s rights have given children a more independent status; the elderly do not depend on the goodwill of children.’
British public policy it could be argued relies upon inauthentic human relationships. That is not to say people in relationships of support would not otherwise be in these relationships at all, but rather that the nature and scope of the relationships they are in are not ones they would choose, imposing both dependency and burden, undermining the self-determination and well-being of all affected, however much people love one another.
A common objective should then be to dismiss the labels of ‘carers’ and ‘cared for’ and the false metaphors of the good Samaritan and burdensome dependent that these titles invoke. People in relationships of support and their advocate organisations have a common interest in coming together to campaign for the right to a good, authentic family life – the right to be husbands and wives, parents and children, partners, sons and daughters, brothers and sisters….Public resources should be marshaled in support of nurturing and sustaining (not replacing, or subverting) these natural relationships.
Until that happens there will continue to be many more sleepless nights.