Wednesday, November 17, 2010

The Big Society and The Charity Model of Disability

The government rhetoric around benefit reforms has a clear message: almost everyone should be in renumerative work. People not in paid work are not contributing. Even people who are in paid work but aren't earning enough to come off means-tested benefits, like housing benefit, are not contributing as much as they should.

On the other hand, all this talk about the Big Society has another message: lots of work that people are currently paid for should not be renumerative. Tuesday morning's headline was that social care was "everyone's responsibility". Which of course it is. Only up until now the general idea has been that everyone exercises this responsibilty by paying the government to provide what care can't be reasonably expected of family and friends.

And it all makes me rather nervous. Disability, benefits and social care are becoming about charity again. The Charity or Tragedy Model of Disability imposes a highly emotional set of value judgements on our lives, our impairments and the help we need and the roles of those around us. Under new benefit reforms, impoverished, unemployed disabled people are to be categorised as deserving or undeserving and the supposedly undeserving - people considered maybe able to work given a perfect and flexible job and a few other miracles - are to be made poorer and stigmatised as workshy. Our Prime Minister acknowledges the need to take care of people who are not able to work because this is part of being a compassionate society. The welfare state is portrayed as a charity, as opposed to the insurance scheme it always was.

Disabled people who need personal care are going to be forced to rely even more heavily on family and friends or volunteering strangers. Bendy Girl has spoken and written a lot about the benefits side of this at her place and Broken of Britain. But I wanted to focus on care.

Care is extremely difficult to define. Most of the help that disabled people need because of our impairments is not unique to disability and only becomes care when it is necessary to pay for that help. For example, my health prevents me driving or using public transport, but lots of people get lifts from friends and family for all sorts of reasons. I have trouble preparing food for myself, but there are lots of households where one person or other does the bulk of the cooking.

Over the years, I have had a number of arrangements with friends and family members where I've had help with the things I can't do in return for some help or other I can give them. Where I need so much help there's no question of reciprocity, I am extremely careful about the people I ask. But for most of my kith and kin, the help I have received has been no greater than the normal exchange of help and support.

But for some people, there is a profound difference between favours once disability is involved. For them, disability has emotional baggage and to help me because I am disabled is an act of nobility, compassion and generosity. They may be no more capable of, say, setting up an e-mail account than I am capable of driving or using public transport to get to where I want to go, but because I am disabled, their giving me a lift becomes an act of heroism my amateur techy skills can't compete with.

Such attitudes are a real problem, because quite apart from having to deal with someone who treats you like they're carrying you on their back up a mountain, they invest you and your impairments with so much emotional baggage. With tragedy, helplessness and dependence which is not your own.

And the current culture encourages this mindset. Placing so much importance on renumerative work or structured volunteering may even discourage people from spending their time and energy just helping out friends and family, which covers most of the help disabled people need - along with elderly people, young families and others who know very well than no man, woman or child is an island.

What I have been very lucky with is not needing very much intimate personal care, and not for very long. What I do know from my experiences with that is that it can be extraordinarily difficult receiving intimate care from people close to you. Sometimes it can work okay, other time it completely queers relationship dynamics and makes disabled people extraordinarily vulnerable to neglect and abuse.

Paying folk doesn't render all carers socially-conscious egalitarians, but it allows disabled people to make choices and maintain some degree of autonomy - to hire and fire people to some extent. This is much more difficult to do with unpaid volunteers, whether they are in your family or not. Sometimes the mere existence of an alternative buys an awful lot of power.

When benefits or any help disabled people get is seen as charity, our progress towards equality flaunders. Disabled people lose choices, and find themselves having to meet the emotional needs of others. As charity cases, we must be deserving, humble and grateful for whatever we get. Others must sympathise. And nobody who feels sorry for you for being who you are will ever see you as an equal.


Anonymous said...

Wonder if you have the same worrying trend in Britain.

Here, there seems to be a real "Crusade". nearest description I can think of at the moment whereby People seemingly more and more regard the Lack of "Quality of Life" (which Injured or disabled people are perceived to have) makes Killing them off a justifed option.

Unfortunately it seems one does not notice this until you actually find yourself in a position whereby you are almost fearful of any interactions with "Injury management" or "Medical People".

Another concern is the number of Injured people, who seemingly are recovering well in hospital and then take a turn for the worse and Die.

An interesting statistic would be the number of "Managed" injured people whose deaths are put down to "suicide" each year

BenefitScroungingScum said...

Great post! Would it be ok to put it on BSS as a guest post please?
Hope all is well with you, BG Xx

The Goldfish said...

Thank you both!

Dad - in the UK there is a troubling debate about euthanasia. The fact we have this debate isn't troubling in itself, but the language used, the assumption that there are great swathes of disabled people who want out is a problem. The poorer we become, the more that families are relied on for care, the more tragic our lives are likely to be seen...

Bendy Girl - of course it would, so long as you link back and so on. Thank you. :-)

BenefitScroungingScum said...

It's up here

Thank you so much for this, hope the 2 links back are ok? BG Xx

The Goldfish said...

That's great, Bendy Girl, thanks again. :-)

BenefitScroungingScum said...

I don't think you're on twitter? So thought you'd like to know this piece is in today's Society Guardian, congratulations! BG Xx

Anonymous said...

May I reprint this blog on my tumblr? Full credit given and with a link back here of course ( :

The Goldfish said...

Thanks for letting me know, Bendy! :-)

Anonymous - that's fine, thank you. :-)

Stephanie said...

Another aspect of hiring carers is that the quality of care (potentially) increases. If someone engages in care as a professional, especially when they work through a provider-organization, they are usually required to go through training, assessed for quality, and have standards that often exceed the level of care necessary to avoid charges of neglect or abuse.

It doesn't always work out that way, of course. But a good caregiver, like a good nurse, often has skills and knowledge a family member or friend is not likely to have.

Stephen said...

@Stephanie - well said! It's also true that carers allowance can be exploited, with family members being paid and then not doing the job through laziness or lack of care. When in that situation, the person in need of care can be trapped with no means of complaining.

Stephanie said...

That's true, Stephen. That's why I recommend working through a provider organization. That way, even if a family member or friend is hired, there is an intermediary to turn to if things go sour.

We have such an intermediary for our respite/therapy funds. Mostly we work autonomously, but the provider organization manages the paper work and the payments, and is there for support and training opportunities when necessary. This particular organization is also a non-profit organization, so the costs are kept low and the funds are spent where they're supposed to--providing care--not eaten up as profit. But even so, it's not run as a charity, but as a community service organization.