Imaginary families and the Social Care crisis

Today is Bloggging Against Disablism Day 2017, a day where disabled and non-disabled people around the world blog about disability discrimination.

Social care in in crisis. Last year, Age UK reported that 1.2 million older disabled people were not receiving adequate care. This crisis is often presented an inevitable effect of an aging population rather than systematic underfunding by the Conservative and coalition governments.

In January, MP David Mowatt spoke to the the House of Commons’ select committee on communities and local government, passing the buck onto the family members of care-users;

“…no one ever questions that we look after our children – that is obvious. No one says that is a caring responsibility, it is what we do. I think some of that logic […] will have to impinge on the way that we think about caring for our parents. Because it is a responsibility in terms of our life cycle which is similar.”

Disabled adults of all ages are missing out on Social Care (or Independent Living as we used to call it), but most are older people and most of them are women. Women also make up the vast majority of carers and PAs, both unpaid within families and underpaid professionals. Social Care is a feminist issue and the Conservative government’s idealisation of families where women are available, capable and willing to take on any unpaid care work needs to be put to bed with a nice cup of cocoa.

There are two problems at the heart of the Social Care crisis. One is money; we live in the age of austerity and there are important missile programmes which have to be paid for from somewhere. The second is the Charity Model of Disability; the idea that disabled people exist as objects of charity, for the generosity and warm-fuzzy feelings of non-disabled people. The value of a disabled person is measured by our appeal as a charitable cause; we have to be prove ourselves innocent victims of tragedy, deserving of compassion and it helps if we’re cute. Disabled people’s needs are then met through kindness and compassion and everyone feels good.

The Charity Model works well if a six year old needs a new wheelchair; folk can put their hand in their pocket, sit in a bath of cold baked beans for an hour and the gratitude in the smiling eyes of that poor wee child makes it all worthwhile. Disabled adults have much less appeal, but our culture still expects our needs to be met this way. Carers – both professionals and unpaid family members – are often portrayed as acting out of kindness, as modern day saints.

It would be vulgar to talk about money in relation to saints – knowing that they’re doing good is surely reward enough for such people. Carer’s Allowance – awarded to people who perform at least 35 hours a week care without pay – has just gone up by 60p to £62.70 a week. Professional carers are often paid only Minimum Wage, sometimes zero hours contracts, and often paid only for the time they spend with clients when much of their working day is spent travelling between jobs.

It would be insulting to talk about abuse in relation to saints, despite the fact that carers often yield dangerous levels of power over disabled people, half of all disabled women experience domestic abuse at some point and over half a million older people are abused each year.

Disabled adults are not like children. While children require guidance in all things, disabled adults need to be allowed to organise our own lives. We need more space, are more cumbersome to move and require considerably greater privacy and autonomy. Even when unexpected, babies usually provide at least a few months warning, while illness and impairment can arrive, or a manageable condition deteriorate, at any time. Few people can organise flexible working hours and a ground floor spare room just in case Granny – who is independent just now – needs live-in assistance.

People largely choose to have children but nobody chooses to have the parents they have; if people have a poor relationship with their parents, it is of benefit to no-one to place older disabled people in the hands of family members they don’t get along with. Meanwhile, there are plenty of folk who just don’t have any blood family, or any in the country, or any who aren’t already laden with responsibilities.

This is not the first time that the Conservative administration has implied that everyone has a supportive, geographically close family with a lot of spare rooms, but Social Care requires much more than even those things. I have experienced the gap between deep love and the capacity to help from both directions: I have performed care for others but lacked the physical capacity to do it well. I have had family members do their very best for me while lacking the temperament or patience required. The very best of intentions are not enough.

We need decently paid professionals funded by the state and real support for those caring for family members. We need this not because we have sympathy for older disabled folk, but because we respect their right to live with dignity, make choices about their lives and continue to contribute to communities around them.

See also Recognizing Elder Abuse.

[Image is a photograph of a black woman with grey hair. She is learning against the back of a seat, resting her chin on her hand and looking thoughtfully from a window. This photograph is by Rhoda Baer and is in the Public Domain.]