Wednesday, November 24, 2010

Weight-Loss and Misplaced Congratulations

In the summer, I lost weight due to stress. I felt on edge and sick all the time and lacked motivation to look after myself, so I wasn't eating nearly enough. I am not rendered skinny, not by a long chalk, but I shrunk enough for others to notice.

I can't claim to be unhappy about the aesthetic effect - I was slightly overweight for ages and I'm not any more*. But my relative slimness is a physical indicator of what I have been through, and as such, I have been confused that all but one person who has noticed has congratulated me on this. Even when people know exactly what has happened, even when I've told them that the weight loss is a direct result of a horrible time and an appalling diet, I am told, “Well, that can't be a bad thing.”

Only it was. I guess folk don't realise how little I have to eat in order to lose weight, given my lack of mobility. I was really quite lucky not to have suffered any more serious ill effects than I did. As it was, my diet compounded my physical and mental ill health; I was tired and dizzy, physically frailer, my sleep was all over the place, and I was functioning on adrenalin. I was not experiencing an eating disorder, but it was hard to break the cycle into which I had fallen. Decision-making was even tougher than usual, so it was easier not to have to think about food. I had even less energy than normal and excessive sleep was disrupting my day, so it was easier not to have to get up and prepare something to eat.

And then there was the psychological element. I had been bullied about my weight, so it felt liberating to be able to simply not eat. Having been congratulated so much on the weight-loss, I was half-afraid of putting it back on again. Last month I read an article about eating-disorders in older women which focussed on the risks following divorce or other personal crises;

"The person can lose their job, suffer a bereavement, have a child or see their relationship break down. As a result, their mood deteriorates and they develop a depressive illness. They lose their appetite and then lose weight," said [psychiatrist Sylvia] Dahabra. "They then notice that they feel better when they don't eat, that they look 'better' and might even get compliments, and this then distracts them from what really bothers them and gives them a new focus."

There's no might about it; women who lose weight quickly receive compliments, regardless of circumstances – I have known women who have lost weight through cancer being congratulated on their shrinkage. The belief is that weight-loss is always desired and always healthy.

The healthy thing is a particular mystery, because as well as the decidedly unhealthy way in which I lost weight, I know I have just a little bit more disability privilege out of being slimmer. Not much, because I wasn't very big and haven't shrunk that much. But the slimmer you are, the more legitimately sick you are seen as being. When you are fat and disabled, even though weight-gain is an obvious side-effect of reduced mobility and a less obvious effect of many illnesses and therapies, you are considered lazy and your impairments are seen as less legitimate.

So for disabled women smaller equals both healthier and properly sick at the same time.

I was quite literally tempted back to eating properly with extremely good food. My young man is a true culinary genius - none of this feeding pigs humbugs to make the sausages taste minty. Stephen is an unabashed skinflint, has physical limitations similar to my own and the worst collection of allergies and intolerances I've ever encountered in one person and yet in his company I have the best and most varied diet I have ever had. The man should write cook books and probably will do one day.

Food is such a tremendous source of pleasure and we are so lucky in the West with the choice and quality of produce available to us. This is why emotional or medical conditions which spoil one's appetite are so miserable, and why a culture which loads food and fat with so much emotional baggage impoverishes itself in doing so. And it doesn't make people healthier or even slimmer - most women you speak to are unhappy about their weight and feel guilty about eating, but the average woman is still heavier than our culture says she should be.

Because of the way weight is spoken about and because of the way my own weight has been spoken about, I do feel some pressure not to put on weight once more. It's not happened yet, despite eating until I'm full at every meal and being on new drugs which could encourage weight gain. However, deep down I know it doesn't matter if I do. And that's something I always did know. Only these days, I actually feel it.

* Since I started writing this, Cara posted on the dubious concept of "normal" weight.

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.