Thursday, November 18, 2010

The Big Society And The Charity Model Of Disability

 A Guest Post From Diary Of A Goldfish

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.

Thanks very much to The Goldfish 

6 comments:

Anonymous said...

Friends? Family?
I think a lot of us do not have people who will or can help.
Big society?
Good luck with that.
I can't even find a small society!

Casdok said...

Well said.
Children in need this week always brings home these points to me.

Alice said...

I choose to live on a low income so that I can work part-time, and I often use the time I gain to help out friends and neighbours, some of whom have disabilities, and many of whom also often help me out with various things too.

If only basic rates of pay for all jobs were better I'm sure more people would choose to work fewer hours, which would mean more people could be employed and more would have the time to create communities and support networks.

Unfortunately this doesn't seem to be anyone's policy.

Jan said...

Yes, and are they going to assess how much "looking after" people are already doing to see whether they've already got resposibilities before they're expected to apply for a volunteering position? No, because that would give a bigger role to the state again. This whole thing's cracked.

The only reason I can't work is because my mind is mushed from years of psychological and sexual abuse. So should I be asking my family for help?! Stick it, Cameron.

Thanks, Goldfish and BendyGirl.

Robert said...

Of course working is not that easy even when you want too.

When i turn up for a job interview in a wheelchair you can see the face change the eyes look everywhere except at you.

The fact is as the government knows without employers we are not going to get back to work.

I've noticed the four people who use to work at my local Asda in wheelchair one living across the road from me have all been laid off until next year, yet the Job center has an advert in the job center for Christmas staff, which means they did not see the workers in wheelchairs as actual staff and thats a problem, if we are seen as charity case and not actual workers we will never get a good deal.

auto donation said...

Someone said,you can have disability but you are not disabled. I'm glad that there are still people who have disabilities but prove that they aren't disabled.