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.

Coming Home Undefeated

I'm thirty in less than three months time and I am moving back in with my parents. So many truths that I held as dear have been crushed underfoot in the past six months, and here goes another one: Whatever happened, I would never ever live with my folks again.

Squish. But as with most of these recent squishings, it is a surprisingly pleasant sensation.

I think it is much harder for adults living with their parents when one party is disabled. I am not capable of living in such a way that home is just a base, somewhere to rest my head and store my stuff and borrow the washing machine once a week, spending most of my time out at work and socialising out of the house. My home is my environment for work and rest and most of my social activities. I cannot live alone and I have to live with people who are willing and able to help me and from whom I am comfortable asking for help.

As a sick teenager, I lived in terror of being stuck at home forever. In my early days as a wheelchair-user, riddled with internalised prejudice, I experienced a special kind of mortification when being pushed around by my mother (not helped by the fact that she initially kept muddling the words wheelchair with pushchair). My parents and I had returned to a practical dynamic we had left behind years earlier and I think, for a short time, our relationship actually regressed; I think my parents forgot how old I now was and I assumed they couldn't possibly adapt. There were real struggles around my desperate need to be both looked after and left alone which I thought could never be resolved. And none of it was resolved before I moved out and in with my ex-husband.

After that, living with my parents remained the big threat. I suppose that between lots of couples, there are arguments that culminate in threats of desertion. But for me, the threat was always that I would be sent back to my parents, like an unruly child who having abused her grown-up privileges, has them taken away again.

For all kinds of reasons, my marriage caused and sustained unnecessary tension between my parents and I and since its end, my relationship with them has dramatically improved. This is mostly about me. I have finally shrugged off my adolescent evasiveness and started to be more honest about my life, my experiences, my health and the help I need. I've also seen my parents through different eyes; my own eyes when no other opinion mattered and the eyes of my open-hearted friends. And thus they frustrate me much less, and I like them much more.

Plus, of course, life's dramas always allow folk to surprise you, either way. My parents have been brilliant in the last six months. Not that I thought they wouldn't help me, but I underestimated their capacity to know how to help me and when. They stepped back when I needed space, they stepped in when I needed assistance. They moved all my worldly possessions from East Anglia to Wales and this weekend, they are moving everything back again.

And I feel at peace with them. Peace is something I am learning a lot about. Where it can and cannot be found, how and with whom.

But it also helps that I am choosing to live with them now, because it is a sensible and practical thing which I actually want to do, not because I don't have any other options. And it helps a very great deal, that this situation is not permanent. I think it would be a lot harder without plans for the future.

As you can see, I have new boots. Second two photographs (and plans for the future) courtesy of the amazing Stephen.

On a not dissimilar theme, William has been writing a lot about independence and dependence lately, both from hospital and now in bed at home.

Seduced by Cats!

In the last few months, I have been learning a great deal about who I am, who I thought I was and who I may yet become. Some of this has been very heavy going – the last few months have been very heavy going, on and off. But here's something fairly light with which to restart blogging (fingers crossed). I am, so it turns out, a cat person.

When I arrived in Wales, I was allergic to the two cats I was moving in with. I knew it was a temporary reaction, just not being used to the things, but I didn't imagine I'd need have much to do with them at all. As I wrote a couple of years ago, I don't like cats. Most of my friends, past and present, are cat people – the friends I am living with are cat people – but I have never been one to confuse cats with people. Cats are animals. Animals are not people.

But I hadn't reckoned with the power of Pudding. Pudding's owner - no, that's not right. Nobody owns Pudding exactly, but my friend L does at least own the house we all occupy and buys his food. Anyway, L had warned me that Pudding's single goal is world domination, to be acquired one person at a time. I was dismissive. Now I have my doubts.

Pudding is a rather special cat. Given my relationships with cat people, I had encountered more than my fair share of cats, but none have been as friendly, none as downright flirtatious as Pudding. Pudding pounces on you, purring before you've even touched him, rubbing himself against you like your clothes and skin are the most delicious texture he has ever encountered. Resistance is futile; place him on the floor and he will return to your lap, refuse to fuss or stroke him and he will force his head under your resting hands.

Pudding sits around most of the day and eats more than he should. He is a big fat cat - I'm currently away with my young man and his two poodles and I'm sure Pudding would flatten both poodles in a fair fight. I'm quite sure he weighs more than the two little dogs put together.

Pudding doesn't scratch; having been born in the US, he had his claws removed (!) as a kitten. So it is not such a bad thing to be kneaded when he wishes to make my lap more comfortable. And being somewhat tubby, he doesn't move too far and doesn't bring me many presents. Thusfar, I have received a single swallow and I have my doubts that it wasn't found dead rather than caught. I have seen a red kite evaded by a flock of swallows, so quite how Pudding could have slain it, I'm not sure.

After I had lived here all of three or four days, Pudding started crying at my door at night. Sometimes at my window. For such a great hulking bulk of a cat, Pudding's meow is rather high-pitched, almost effete. Certainly unignorable. And so he started being allowed in my room at night, and then he'd climb on the bed. Then growing ever bolder, he'd climb under the bed covers. And thus, I found I had been taken in.

My other feline housemate, Booboo, is a very different character. At first acquaintance, she seemed rather stand-offish. Now I realise she merely pretends to be independent and unsociable in the cast of most domestic cats I have met. She rarely climbs onto one's lap and she does consider both fingers and writing impliments to be legitimate prey. Especially when a person is trying to do something with said fingers or writing impliments.

But she does not wish to be left alone. She keeps her distance but follows me around and if ignored for long enough, she begs for my attention. She also cries at my door at night, although her greatest desire for intimacy is to sleep on the end of the bed beside my feet.

Despite a long acquaintance-by-proxy with cats, I have only begun to really get cats this year. I now recognise their considerable appeal. And their downright spookiness. The cats know things that they ought not to know. The cats turn up whenever I am distressed. The only time they won't sit on the bed is when I am in particularly great pain and they'd be in danger of hurting me - I don't need to shoo them away, they just won't get that close. And they get a little weirder than that. One day Pudding startled at my hallucination. It didn't startle me; these things happen. It was just a vague small thing that I knew wasn't there, moving between two points and then vanishing. But Pudding turned suddenly and watched the point where it disappeared for a moment afterwards.

So cats are spooky in ways I can't fully explain with my rationalist materialist outlook. All I do know is that my clothes are now covered in cat hair.

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Thanks to everyone who commented on my post in June and who has e-mailed. I am very behind with all correspondences but your support is most appreciated.

The Unreliable Narrator

Sooner or later I had to write again. I have been out of touch with all of you. I have not been reading blogs. I have been busy leaving my husband and running away to rural Wales.

When I first began to talk to others about my marriage, and it being in the trouble it was in, I was very conscious of the danger of editing the past. If it was going to fall apart, I thought, I don't want to start telling stories about it having always been bad, as if the last ten years of my life – my entire adult life so far – had all been a big mistake. That would be ridiculous.

It's not that it turned out to be a mistake. And it's certainly not that I didn't love the man – I loved him as much as I thought myself capable, which was a very great deal. But it wasn't what I thought it was. When I began to talk to others about our problems, I couldn't pretend for very long that it had just been the last six months or a year. And I couldn't pretend that our problems weren't deep or that they hadn't damaged me.

I don't lie to myself very often. Or if I do, I am bloody good at it. Whenever I've made mistakes in the past, or whenever I've become disillusioned with projects or people or places, I have always understood why I thought the way I thought at the time. Even when I was wrong – even when I was foolish to see otherwise – my mistakes have made a kind of sense to me. Not that it's always easy to forgive myself.

I don't yet understand why I thought as I did about my marriage, why I presented what I presented to the rest of the world. The facts I edited out. The spin I put on what was left. And this blog is the documentary evidence. I haven't blogged properly for a long time and
I thought about abandoning or deleting Diary of a Goldfish, but I like blogging, I want to keep blogging and there is so much of my history here. Only, as every historian knows, eye-witness accounts are not always to be taken at face value.

So here I am. I find I trust myself a little less, but I like myself much better. I am living in the most beautiful place in the world with good friends to whom I am as useful as they are to me. My heart is full of love and hope and is in very safe and capable hands. And
here I am, writing again.