Your Kicks For Free

Censorship, within the arts, is almost always a very bad thing. Art not only makes our lives much more enjoyable; we use art as a mirror in whose reflection we can better understand ourselves, our lives and the world around us. I don't really need to defend art or variation within it. Where art is stifled by censorship, life itself is stifled.

And alas, art has to mean everything. Everything anybody calls art, music, drama, creative writing, even if to our own eyes it lacks all merit. This is not to say all art must be revered or indeed given any time or space at all, but it must be protected from interference. And freedom of expression is always a too way thing – we have both the freedom to express ourselves and the freedom to access those expressions.

A far more worthy post than this one would be about budget cuts to the arts in the UK, both in direct arts funding and in education, as well as the closure of libraries and all sorts of other heinous crimes against our culture being committed at this time. But I feel I am a blogger in rehabilitation and I need to pace myself. So let me start with Dire Straits.

When I first heard that Canadian radio stations will now only be allowed to play a censored version of Money for Nothing by Dire Straits, I thought it was a bit ridiculous. The song (unedited version here) is about a removals gang who envy and mock the easy and hedonistic life of rock musicians, referring to one of the musicians as a faggot. This context is self-evident from the lyrics. It's rock musicians mocking their own self-image; the irony is not at all subtle. And it is a classic song.

Sparky wrote about this and has been quite upset. Some folk who are against the censorship have used the opportunity to use the offending word repeatedly and mockingly. Others have attempted to defend the word as inoffensive and still others have used the events to attack gay men as tyrannous and over-sensitive - all those classic rants about political correctness. And reading Sparky's considerable discomfort at the debate (if it can be called a debate), I swung towards his position.

And this brings us to an often neglected but vital part of freedom of expression. Part of the freedom to express oneself is the freedom to be silent. Artists have the right not to make art, the media have the right not to publish or broadcast things. And part of the freedom to access art is, for lack of a better way of putting it, the freedom to remove oneself from the experience.

Nobody has a right not to be offended, but people do have a right to opt out, within reason, of listening to or looking at things which offend them. This is why what is allowed on a billboard is quite different to what is allowed between the covers of a magazine – most people who pass have no choice but to at least glimpse the billboard, whereas a magazine must be bought and a page can be easily and swiftly turned to hide offending words or images. All mediums have different responsibilities according to how active or passive a person has to be in order to access the art.

There are lots of situations where you can't opt out of listening to a radio. In various places of work, in stores and restaurants, in taxis, even in the streets in the summer when folk have the volume up and their windows open. So where a word is well-established as being both offensive and discriminatory, then maybe it is fair enough to keep it off the radio? It is extremely easy to access uncensored music, so nobody is really missing out.

But I'm not entirely happy with this. The biggest problem with this kind of censorship is inconsistency. Sparky wrote a bit about this too, and lists some bizarre examples of words which have been deemed unpalatable. It's a very small list of words which are totally offensiveness in any context *. One of the more difficult words for me to hear is bitch, which is often used in deeply unpleasant contexts, but I've never been upset by Elton John or Meredith Brooks singing it, where it is self-referential. Context does matter with many offensive words, if not all of them.

It isn't such a challenge to edit out individual words, but there are songs where the entire lyric is homophobic or misogynistic or otherwise hateful. This is both far more problematic and usually very difficult to define - at what point does a song about a heartbroken man cursing all womankind slip into actual misogyny? Homophobic songs, at least all the ones I can think of, tend to have such a profound lack of subtlety that they are swiftly identified and more or less removed from radio playlists. There are entire genres of music where misogynist lyrics come as standard.

I have to say that I would distinguish between these arguments, about offensive discriminatory words or content, and arguments about art encouraging certain behaviour - like Money for Nothing encouraging people to use the slur within it. I think the argument that some people can't understand the ironic usage and would think it gives them license to use such language is the top of a very slippery slope.

Art is often about emotional extremes, including hate and violent inclination. There have been lots of popular songs about romanticised murder coming through from folk music, sometimes sung from the perpetrator's point of view. Violence has always featured in gripping and moving narratives, without calling us to violence. That issue is not uncomplicated of course, but this issue of art corrupting our minds is more dangerous when it comes to our freedoms of expression.

Anyway, I don't have a particular conclusion here because I'm still pondering it all myself.

Incidentally, this matter is a million billion miles from the nonsense about taking the N word out of Huckleberry Finn, which has been written about very eloquently elsewhere (such as here). In summary, when a book is being used in education, context is everything, and removing the word dilutes a vitally important context

* My wee nephew was singing a somewhat illegible nursery rhyme and I tried to identify it using Spotify. On one album of nursery rhymes I spotted P*ssy's in the Well. Which did make me giggle. Proving that censorship itself can corrupt young minds – chiefly my own.

One Month Before Heartbreak: Judgement Day

More or less cross-posted at Single Lens Reflections

I've had a very busy and exhausting week, but really wanted to participate in the One Month Before Heartbreak blogswarm, campaigning against UK disability benefit cuts and in particular, the proposed abolition of Disability Living Allowance. But I haven't been able to write anything. I was lamenting this to Stephen and we decided to have a IM chat about it and use that, however it came up. So it is a little cringe-worthy, but better than nothing.

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Goldfish: A few months ago, I mentioned to my new GP that my DLA was up for renewal. He warned me that if I got turned down, I shouldn't take it personally - he knew many people who were being refused now, despite having very severe impairments. I know not to take it personally, of course, and yet the current system, political rhetoric, media coverage and the tone of proposed reforms are such that anything we have to do with disability benefits feels very very personal.

Stephen: And indeed it is personal. As much as it'd be nice to live in a communists utopia, we need money to live and as such are reliant upon national insurance to pay out for our survival. But not only that, we, the disabled, are made to jump through hoops to determine whether or not we're capable of work. Which is especially galling when the hoop jumping can be as difficult or impossible as work.

Goldfish: "The disabled"? You're proposing to put this on my blog, honey.

Stephen: You know me - I call a spade a shovel. Dear reader, please forgive my horrendous grasp of correct terminology. I care about you all deeply, even though I'm insulting you at the same time.

Goldfish: Anyway.

Stephen: Anyway.

Goldfish: I think another thing which makes it so personal is the fact that politicians talk about the workshy and other variations on the undeserving poor, the media take that a step further and render most of us scroungers or cheats, but then people around us use the same language - worse language even than "the disabled". They talk about welfare cuts as a universally good thing because of the scroungers, because of the so-called disabled. And if they notice your discomfort, they insist that they don't mean people like you.

What they don't realise is that almost all claimants are people like you, and me. And we're not magically protected from the effect of cuts just because they happen to consider us worthy of protection.

Stephen: Okay okay not so subtle point taken. People who might not be quite so able but who are still dashingly handsome and/or ravishingly beautiful are, indeed, clumped together. I mean, the DLA form itself is only really relative just so long as you stick to a certain set of disabilities. If you're outside of those pre-defined multiple choice answers then you have to write a huge amount to try to explain why you don't fit in and yet why you still need this money.

Goldfish: And I imagine most people are outside those boxes; most disabled people aren't full-time wheelchair users, don't experience total blindness or deafness etc..

Stephen: Do you think that the forms mirror public perception? The good disabled person who's deserving of the money that they so generously donate from their children's piggy banks is the one who answers all those questions by ticking the top most box (and who, sadly, but also thankfully, might not live too long and so not be a long term financial drain)?

Goldfish: In fairness, I don't think the public feels very generous towards those who tick the top box of the mental health questions.

Stephen: True...as we saw recently in the aftermath of the Giffords shooting. The stance of Sheriff Dupnik was that the world was a safer place with the mentally ill locked up rather than integrated into the community. So our ideal disabled victim (because surely they are a victim - of a random virus, a terrible car accident [just so long as they didn't cause it] or, if possible, falling from a height whilst trying to save a poor little girl and her kitten from a tree house fire) is a full time wheelchair user, possibly also blind, very grateful and entirely sane. Is that even possible?

I'm not sure I'd be that sane after all that bad luck.

Goldfish: *rolls eyes

Stephen: What?

Goldfish: I will have to apologise to any heroic blind wheelchair-users who pass by my blog now.

In any case, we were talking about this issue of how difficult it is not to take this stuff personally. You've been trying to sort out your exam conditions for your final university exams.

(Do you like the subtlety there? - I should work on daytime TV.)

Stephen: Indeed. I'm studying for a BA in Classics via distance learning. Because of the setup, it's 100% exam graded. As you can imagine, that means that come exam time there's a considerable amount of pressure. Indeed, for the last few months I've been hell to live with, isn't that right, Darling?

Goldfish: Hades, sweetheart - I thought it was Hades?

Stephen: I've failed already. Anyway, because I'm a person who might not be quite so able but who is still dashingly handsome and/or ravishingly beautiful (or a PWmnbqsAbwisDH/RB to those in the know) I need some help when it comes to exam time. I get to take my exam locally, for example, rather than having to travel to London. And I am able to use a computer keyboard rather than handwrite. And in order to qualify for these I have to get a doctor's letter explaining that I'm a PWmnbqsAbwisDH/RB and so should be allowed these things. In my first year the system was so poorly set up that I wasn't aware as to whether I was going to get the special arrangements or not until two days before the exam.

So although I got the help I needed to make my chances as fair as the next wannabe classicist, I had a considerable amount of extra stress that none of the other candidates did.

Goldfish: (Incidentally, dear reader, he has not been at all difficult, only has occasional flashes of self doubt, such as "I've failed already." What this man doesn't know about the motivations of Ajax when he set upon his "wooly captives" is not worth knowing. )

(That's the lesser Ajax, by the way. Or is it the greater one?)

Stephen: (Greater)

Goldfish: (Okay)

Stephen: (You know when I said - could you take the exam for me..?)

Goldfish: Anyway

You were trying to make sure the exam conditions were sorted for this May, love. And like any large institution, the wheels were turning very slowly...

Stephen: Yes. I had been told that there would be no need to reapply, but things have changed and now I have to get a new doctor's letter. Of course, getting an appointment with the GP isn't that easy and I've got that booked for just over a week away. The expectation was that I should be able to get a letter posted off to them instantly, so straight away I wasn't conforming with the idea of what I should be doing.

Then there was the issue of a local exam centre. If you're one of the idealised disabled, the process of getting to London *shouldn't* be a problem. But for me it's impossible.

But the problem is...the people in the special needs department haven't specifically questioned these things. They just mentioned them (in, I think it's fair to say, a rather clumsy way. Even more clumsy than my terminology. Yeah, I know, I didn't think it was possible either). The problem is that I feel under pressure to conform to ideas of what I should be capable of doing. I feel that I am being judged. And, well, I *am* being judged. Someone has to look at my medical evidence and say whether what I'm asking is appropriate. But that's a horrible position to be in. Especially when I am actually paying for the privilege of taking the degree!

By the way, dear reader, Deborah's just popped to the loo. So we're alone now. We can talk about whatever we want! Have you seen the new Mercedes SLK? What do you think of the front end redesign? I'm afraid it's a bit too clunky to me. that sort of front heaviness works on the SLS, but then that's an entirely different vehicle...

Goldfish: Sweetheart, I think you are getting distracted.

Stephen: Er...yes, maybe.

Goldfish: When you got that e-mail from the Special Needs people, you said that you felt that they were suspicious of you?

Stephen: Yes. Well, just the act of asking again. When you're living with something, especially a disability, it leaves you very sensitive to any mention of it. Or it does me. Being told that they would collect the information so that they could make the 'right decision' upset me. What is the right decision? Is it right for me? For the university? For the world in general?

And what's right got to do with it?

If the world were right I'd not have to be dealing with extra process to get to a point of equality.

Goldfish: And I tried to reassure you that they probably weren't suspicious of you, just clumsy and uncreative in the way big institutions often are. But this is how we're made to feel. Like every need, however simple, has to be justified.

And this is the case in many areas. Lilwatchgirl is going through this with Access to Work, you've got this with your exam conditions, but I think it all comes down to the way that we talk about disability in society.

And so much of that is to do with politics, and so long as disabled people are a political scapegoat, so long as money-saving measures are so often focussed on us and how expensive we are, then people are going to think that it is the natural order of things that we have to justify our existence in that society.

Bad Legs versus The Stairs

I accidentally pressed publish half way through writing this, so folks reading my feed may have read an unfinished post here earlier - sorry!

Describing myself as disabled for the first time was one of the single most liberating experiences of my life. It was the next best thing to being cured of my illness. This is difficult for lots of people to understand, including some disabled people. The thing that enabled me to acknowledge my disability was the Social Model of Disability. I'm not going to write a primer for that here (I tried before), but this months Disability Blog Carnival is about freakiness, and this post is about how raising the freak flag can enable you to feel less freaky.

There was a point where my bad legs gave me problems getting upstairs. My condition causes my legs to hurt all the time, more so when I have my weight on them and very much more so when I attempt to climb steps. I was the problem. And this was how I saw my role in all the difficulties I encountered. There were all sorts of things that were difficult to do because I hurt, because I had this problem or that problem, even because I had a problem that other people couldn't understand and were reluctant to accommodate.

Then I realised that the problem was that stairs disagreed with me. I think this is the best way of putting it. Rather like when people are told they have food intolerences - really, it makes more sense to say that food doesn't agree with them; the food makes a ruckus travelling through their bodies when the person themselves was quite happy to live and let live. I have nothing against stairs but they pop up and get in my way. I am perfectly capable of moving between levels if there is a ramp or a lift. Where I can't access areas of a building, the stairs, not my legs, are the problem.

This is not to say that all stairs are wrong or that every building that exists can or should be made fully accessible, but where there are stairs and nothing but stairs, this is a problem that must be born. I am not a problem that the building (or those who have the power to do something about it) have to work around. The stairs are a problem to me and other people. Not even people like me, but people with all kinds of physical variation.

And thus I am disabled. Obstacles exist, attitudes exist which impose unnecessary limitations on my life. Disability isn't something I have, it is something that happens to me.

So why was this realisation the next best thing to being cured?

My illness suddenly became much more personal and private. My illness had nothing to do with the obstacles and attitudes I came across. The fact that my condition is invisible, fluctuating, a little medically mysterious, none of that stuff matters in terms of my interaction with the world. The world sometimes has a problem with that stuff, but it is the world's problem, not mine.

So for example, the stairs. My illness isn't the problem with steps. If they invented a magic cure for the Dreaded Lurgy, then there would still be people with other conditions that cause pain when climbing stairs - including some of the most common effects of aging. Then there are conditions which make folk unstable and prone to toppling over when climbing stairs. Then there are legs that don't work at all, don't bend or straighten and cannot hold any weight. Then there are legs that aren't even attached any more. That's a great number of people, to say nothing of those non-disabled little people who have not yet learnt to walk and so need carrying or pushing in prams. In any busy public building which caters for a cross-section of society, steps and stairs are likely to cause an obstacle to several people every day.

In other words, whatever happens with my health, the stairs are still a problem. If I am able to build up my strength so that I can move about more comfortably, then the need for accessible buildings wouldn't go away. My personal ability to climb stairs has varied greatly over the course of my illness, but their disabling effect hasn't changed.

My identity as a disabled person is a very public thing, whereas my illness is very personal. And this gives me far greater freedom about how I deal with my illness. I have written before about the Sick Role and the obligations one feels when one identifies as an ill person. You are obliged to appear ill, to convince others that you are ill, to try to get better and to convince others that you are trying to get better. It is almost as if you end up apologising to every flight of stairs you meet, as if there is some bargain between you that you have failed to keep.

But since it is stairs and narrow doorways and loud, bright environments and most of all other people are the cause of the inconveniences I experience, I have far greater freedom in my attitude towards my illness. I am allowed to hate it or not mind it. I do not have to put on a brave face, nor do I have to see it as a tragic.

So for example, to be honest, I don't mind not being able to walk about very much. It is far bigger problem that I can't drive, which is mostly down to cognitive symptoms. If I could be rid of my cognitive symptoms, and still experience chronic pain (at this level) and mobility problems, my life would be a lot better. During periods where my pain has not been so well managed, I have longed to lose my legs rather than experience that amount of pain. These aren't socially responsible attitudes - if I wanted to be more convenient to other people, I would first want to walk normally, then to be able to work normally and so on.

Most of all, I don't have to mind the difference. Because my difference is no more extraordinary than lots of other differences, including those which have nothing to do with medical problems or physical impairments. However I feel about my illness myself, to the rest of the world this ought to be a neutral fact, like my height or the colour of my eyes. The fact it isn't is what makes me disabled.

It was thirty years ago today

This year, I've done a great number of things which required significant courage and as a result, my life has completely transformed from where it was a year ago. Today is my thirtieth birthday, so I think I am entitled to one self-congratulatory blog post, which also explains some of what I've been up to whilst not blogging, or hardly ever blogging this year. Things haven't settled down just yet and next year promises to be another kind of adventure, but life is better for me, at thirty years old, than it has been for at least the last decade. Because I was brave.

I have read and talked to others a great deal about courage over the years, especially in relationship to disability. Disabled people are often called brave for simply existing, let alone achieving things or making changes in our lives. We answer this misplaced compliment with the fact that faced with these limitations, you just get on with it. You have very little choice. Mik Scarlet wrote about this most recently in the context of the way disability is represented on television (his two other 'Lectures' on this are well worth a read).

But this year, I have been properly brave and learnt a few new things about bravery. The first is that once you are brave about one thing, further acts of courage become a lot easier. The most difficult thing I had to do, I did in March.

I allowed someone else to read my novel. There has been no occasion in my life so far where I have had to place such profound trust in someone. And honestly, this was the bravest thing I had to do. This may seem rather silly, given that I wrote the novel to be read and it would have been a ridiculous thing not to show it to anyone. But I was so disheartened about it all and I had no evidence that it wasn't a complete pile of pants. As soon as life calms down enough to look into agents and publishers, letting others read it will be a doddle in comparison.

The second lesson is that whilst we have very limited choices about whether to do the brave thing or not, there still is some choice. I have long thought this with disability - we don't deserve medals for carrying on and living our lives, but occasionally you meet someone who did give up. Some people experience loss, whether it comes in the shape of disability, bereavement, divorce or financial disaster and they simply become their own tragedy and get stuck as victims. It almost always requires some courage to get over things and move on. Sometimes, because people and their experiences are complicated, it requires a lot of courage, even where we have everything to gain by it and even though it's still inappropriate to be considered heroic just for making the right choice.

In April, I brought my marriage to an end. On many levels, I had no sensible choice at all and I faced very little temptation to do otherwise. But it was still a choice which required significant courage - hopefully far more than most break-ups require. I also had choices about how I went about things. I went to great lengths to behave honourably and kindly. And that was brave.

The third thing I learnt is that acts of courage require faith. There are some things you have to believe in, in the absence of evidence, especially when it comes to your own capabilities and the intentions of other people. You have to be able to make promises to yourself and others, and to believe the promises of others if you trust them.

At the beginning of this year, I had become very cynical about others and I had no faith whatsoever in my own resilience. I felt I would be flattened under the weight of any further crises, and that I couldn't believe anything another person said, especially about their feelings. But I learnt. I learnt very quickly and realised both my own strength and the strength that others were prepared to lend me. I am an extremely capable person when it comes down to it.

So what else did I do this year?

• I ran Blogging Against Disablism Day again this May, despite everything that was happening at that point. I was sleeping on a sofa, living in a house with the person I was separated from, dealing with no end of tension whilst trying to organise myself and the few worldly possessions I was keeping in order to move out. But my friend suggested that achieving continuity with BADD would be useful when everything else was in such flux. And it was. So a special thank you to everyone reading this who participated.

• I repeatedly placed myself upon the hospitality of others. In one context, I was paying rent and utility bills, but neither my friends-cum-landlords nor myself ever shook off the sense that I was a guest there (which was a problem, but one unwittingly created). Beforehand, I had imagined myself enormously burdensome because of my illness and difficult to live with because of ideas about who I was. Yet, since May, I have variously lived with seven different people, five dogs and two cats and I have received no complaints. I have broken two mugs, but I replaced them both with nicer ones. And I have a much better gauge of how much help I actually need against what I am able to contribute.

• I told a friend I was in love with them. That was brave. And worth it.
  

• I moved to another country. Well, almost another country. I moved to a part of Wales where Welsh is spoken more than English, and I knew no Welsh. Unfortunately, I didn't stay long enough to learn Welsh and make new friends locally. But I planned to and that was brave. And I'm still going to learn Welsh because I think it sounds great.

• I took on responsibilities, despite my sense of profound incompetence and dependence. There were days when someone relied on me for their oxygen supply. On the same days, I looked after three dogs, despite being totally intimidated by them (Border Collies do look at you funny – even dog people agree with me on this). I have now totally overcome my uneasiness around dogs.

• I placed myself in a great number of different social situations which involved some social risk. It's been so rare for me to get out of the house and deal with any face-to-face social contact, that this stuff has made me very nervous. I sat down to dinner surrounded by strangers, more than once. I joined a brand new family, very strange and different from my own.
  

• I moved to live with my parents, eleven years after I moved out, the second house move within six months. This required a lot of faith, both in my folks and myself, that we could avoid the nightmare I'd always feared it would be. So far, so good.

• I have tried a great number of new things. Foods I have never eaten before and things I thought I didn't like. I have experimented bravely with clothes. I have made all sorts of decisions which bore no relation to the approval of anyone. I'm not sure I've ever managed that before in my whole life.

• I have opened up to friends and family more than I ever have before. I have begun to talk about some of the worst experiences of my life, things I have worked very hard to hide from the world. This is brave.
  

So there we have it. Happy Birthday to me, a very Merry Christmas to all who celebrate it and an excellent New Year to one and all.

Before I go, more reading for you: Ira provides by far the best festive post this year, God Bless Us Everyone on Tiny Tim and disability. And disabled bloggers in the UK need to know about One Month Before Heartbreak.

Ann Widdecombe: Feminist Icon

Ann Widdecombe is wrong about a lot of things. She campaigns against a woman's right to choose and as a politician opposed various anti-disrimination legislation. She does not consider herself a feminist. And yet, I'd argue that Ann Widdecombe is a feminist icon.

Ann Widdecombe proves that, whether or not women can have it all, we certainly don't have to. We might not want it all. We may be completely disinterested in over half of it. A woman can very well not have it all, and still be a tremendous success as a politician, as a public figure and most recently, as a competitive dancer. And she is a success. There is no reason to suspect that Ann Widdecombe is not completely and utterly fulfilled by the career she has had and the bits and pieces she does now, together with a family and social life which doesn't involve romance or children of her own. She is a rare public example of the not uncommon phenomena of the happy spinster.

Although her politics may be totally and utterly wrong (and they are), in many ways she was an exceptional politician. So far as I can see, she always said what she meant and did what she said, in a political climate increasing concerned with spin. She was not - is not - afraid to say something that most sensible people would totally disagree with. Last week, she supported Lord Young's comments that most of us had never had it so good (although in context, she has at least a bit of a point).

Widdecombe is the closest thing we have in mainland Britain to the Religious Right and yet she is not a hater. She is no egalitarian and converted from the Church of England to Roman Catholicism at the point that the CofE ordained women. She is anti-choice and believes in a very restrictive version of heterosexual marriage to be the only context in which people should take their clothes off - but she disapproves of most of us in equal measure. She has never said anything hateful towards gay people - she insists there is no difference between sexually-active gay folk and straight folk who also fornicate (it's a great word and without people like Ann Widdecombe, it might fall out of use entirely). I think the most enraging thing I ever heard her say were comments about rape, which focussed entirely on women's responsibility to avoid situations in which they might be vulnerable to assault.

But what makes Ann Widdecombe a feminist icon is that she doesn't want to be one. She doesn't feel that because she is a woman, she has to support women's issues, or exercise any gender bias at all. She doesn't feel the need to be any softer or fluffier than any male politician of her creed and generation, even though she was and still is subject to far more ad hominem attacks than most politicians of similar rank. Politicians who happen to be women (Widdy hated to be known as a Woman MP) are particularly vulnerable to criticism for their supposed attractiveness, their romantic and family lives and when they are right-wing and generally, well, harsh, they are attacked with gendered language. So Widdecombe is described by her detractors as lonely, loveless, frustrated and frigid, where there is no evidence that she is any of those things.

What is particularly admirable about Ann Widdecombe is that she apparently hasn't tried to neutralise this effect. Widdecombe is not ugly and has a very sweet face when she smiles, but she deviates from cultural ideals of beauty in almost every way; she's the wrong shape, the wrong weight, the wrong age and has had one of two very unfortunate haircuts. During a period where Blair's Babes were being made over to make relatively attractive politicians more attractive, she was still applying the pudding-basin and sheers method (we've all done it at some point). She has never tried to be other than she is. Unless I'm missing something, this lady is truly authentic.

In Strictly Come Dancing (yes, yes, you've got the point - I'm hooked), the Widdster resists all the reality show narratives that other folks fall into. Not for her talk of the journey, not for her tearful frustrations or life-changing experiences. Her brother died during training, and there was no mournful montage about her soldiering on despite it all. And she comes across as quite a lovely person. Physically awkward and a little shrill, but these are not bad things to be.

Women in late middle age are extremely rare on our television screens and newspaper pages and other than royalty, the only other examples I can think of are glamourous actors with long careers behind them. These women are famous, in part, for their beauty and continually congratulated on its preservation. Widdy proves that women can be valued and respected for more than being nice and being pretty. Even though she is, at least, just a little bit of both.

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.

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.