Farewell: the final Crip's Column

In her final column for the New Statesman, Victoria Brignell reflects on what it has meant to write

"Finished, it's finished, nearly finished, it must be nearly finished." Such are the opening words of Samuel Beckett's Endgame and they seem an appropriate way to start this piece. This will be my last column for the New Statesman (for the foreseeable future, anyway). Like an ambassador coming to the end of a foreign posting, I'm sending my valedictory dispatch. After four years, 50 columns and 83,000 words, it's time to call it a day. Martin Luther wrote his 95 Theses, the Church of England devised its 39 Articles, and I've produced my 50 columns.

I don't expect this news to provoke the same reaction as David Tennant's decision to leave the Tardis or Terry Wogan's announcement that he was standing down from his Radio 2 breakfast show. After all, the number of hits this column receives is slightly lower than the audience for Radio 2 or Doctor Who. Besides which, I'm far from being in the Premier League of British columnists. I'm not as witty as David Mitchell, not as outspoken as Jeremy Clarkson and not as erudite as Mark Lawson. On a good day, I might just scrape into the Vauxhall Conference, or whatever it's called these days.

No, the most remarkable aspect of Crip's Column isn't the quality of my writing but the fact it exists at all. I would like to thank the New Statesman for having the bravery to commission this column in the first place. I might be wrong but I can't think of any other mainstream newspaper or magazine website that currently has a disabled columnist writing regularly about disability issues. Instead of ignoring disabled people, the New Statesman has given us a platform to reach a wider public and it should be praised for that. If the previous editor of newstatesman.com hadn't approached me, I would never have had the confidence to propose writing this column. More publications need to make an effort to find and publish work from the talented disabled writers out there.

Although the commissioning of this column is noteworthy, what is even more surprising is that I agreed to take it on. If someone had told me on my 30th birthday that I would spend much of my spare time over the next four years writing a regular column about disability and my life as a wheelchair user, I wouldn't have believed them.

You may not believe me, but I am naturally a private person. I don't readily talk about myself. In everyday life, I only tend to open up to close friends and family. I've always thought there was considerable truth in the French saying, "A happy life is a hidden life" so I didn't choose to write this column for the publicity. Unlike many of my generation, I've never wanted to be famous.

And I certainly didn't decide to write this column to earn extra money. In the current economic climate, the New Statesman is as cash-strapped as the rest of the media that specialises in serious current affairs coverage.

So why did I decide to write this column? When the editor asked me, why did I say yes? For a start, I felt I had a duty to accept the commission. For most of my life I've complained that the press doesn't employ enough disabled journalists and writers. It would have seemed hypocritical if I had turned down the request. I've always believed that if something is wrong we all have a responsibility to try to put it right. As someone once remarked, if you're not part of the solution, you're part of the problem.

Secondly, it's become clear to me over the years that there is a great thirst for knowledge about disability amongst non-disabled people. Now and again I'm asked questions about my life as a wheelchair user and it's usually the day-to-day mundane matters that interest people the most. Questions I've faced include: How do I wipe my nose? (Someone does it for me). How do I use a telephone? (I use a headset and someone dials the number). How do I wash my hair? (Sometimes while having a shower or bath but often while I'm lying in bed. I have a specially moulded plastic tray which slips under my head and enables water poured over my hair to drain into a bowl beside the bed). A colleague once told me that she had never properly understood the role of a disabled person's personal assistant until she met me. I hope this column has helped in a small way to increase the public's understanding of disability and what it means to be a wheelchair user.

Thirdly, I said yes because I find writing very fulfilling. I relish the process of composing a piece of writing, whether it happens to be a poem, a story, an opinion piece or a factual article. I love playing with words, manipulating and shaping language, and the challenge of translating the ideas in my head into text on the page. After I've finished this column, I'm not going to stop writing. I already have plans to write a play or TV drama. One day I might even attempt a novel, although perhaps that is a bit ambitious.

My fourth reason for agreeing to write this column is that the New Statesman gave me complete control over it. They have permitted me to write whatever I want, whenever I want, as much as I want. They have never tried to influence what I write, never made any suggestions, never rejected any articles I've given them. To have this much editorial freedom is highly satisfying.

However, my main motivation for writing this column is that, just like Pliny the Younger 2000 years ago, I want to leave something for posterity. The words that I have written will continue to exist long after I have ceased to wheel around this planet. As the art expert Waldemar Januszczak says: "When we are gone it is our art that remains and which our successors use to judge us. Art is our gift to the future." This column is my piece of art, my gift to the future. Somehow I doubt whether my columns will be as valued in 2000 years time as Pliny's letters are today. But I hope that when historians come to research disability in the late 20th/early 21st century they might find my writings useful. The height of my ambition is to be a footnote in the thesis of a future PhD student.

A couple of years ago, while on holiday in Norfolk, my parents and I went hunting for ancestors' graves in a churchyard in Holt. I found looking at the headstones a sad, depressing experience, not because the people were dead but because I knew so little about them. During their lives they would have had hopes and fears, joys and sorrows, jobs and hobbies, love affairs and friendships, but all this had now disappeared, hidden at the bottom of the dark well of history. Nothing was left of their existence except their names, dates and to whom they were related. I don't want this to happen to me. I don't want to be forgotten. Now that I have created this column, there is a chance that future generations will remember me. I'm glad to know that some record of my life, my personality, my spirit will survive after I've gone. According to the Jewish tradition, there is a bone at the tip of a person's spine called the luz where the essence of your soul is kept. This will always remain, even if the body is destroyed. These columns constitute my luz.

So how have I written these columns? As I'm paralysed from the neck down, I can't type so I use a voice recognition computer program. It's an amazing piece of software. I speak into a microphone and the words miraculously appear on the screen. From time to time, the recognition rate isn't as accurate as I would like it to be and I have to spend time correcting its mistakes. But the benefit of using voice recognition technology is that it enables me to write on my own. The alternative would be to dictate to a human being but I am too self-conscious to compose new work if another person can hear what I am writing. It would also be unfair of me to expect my carers who already help me so much to spend countless more hours typing these columns.

When I first embarked on these columns, I set out to give a realistic account of what being a tetraplegic wheelchair-user entails - the practical details, the subtle psychological effects, the philosophical aspects and the wider social issues. I've aimed to explore its serious and funny moments, its positive and negative sides. Whether I've succeeded or not is up to others to judge. What I want to emphasise is that every disabled person is different. While there are bound to be similarities between me and other wheelchair users, there will always be variations in experience, needs and views. I would no more claim to be representing the lives of all wheelchair users than I would claim to represent the lives of all Londoners or all radio producers.

I've tried all the time in my columns to be as honest and truthful as possible. However, the picture I have painted of my life is inevitably a partial, incomplete one. There are limits to how candid I can be. Some topics are just too sensitive to write about. And some incidents cannot be touched because it would mean invading other people's privacy. Although I have chosen to expose my life in public, others have not made that choice and I have a responsibility to protect their confidentiality. I'm not going to exploit those close to me for the sake of my writing. As a result, I have had to be selective in what I write. Still, if I recounted every single detail of my existence these columns would be very tedious. I don't want to be seen as the female equivalent of Frank Pickle, the dull and pedantic parish council secretary in the Vicar of Dibley. Let's be honest, my life isn't as interesting or as eventful as that of my heroes Betty Boothroyd, Joan Bakewell or Dame Judi Dench.

Writing these columns has been hard at times - emotionally, mentally and physically. When I'm tired, have a cold or generally don't feel well, my voice deteriorates and dictating to the computer becomes harder. You won't be surprised to hear that Crip's Column has consumed a large proportion of my spare time. There have been periods when it has been difficult to fit in producing this column together with a full-time job and my other commitments such as being a school governor and helping with a local charity. I confess too that there have been moments when I've wished I was doing something else. I've lost count of the number of books that have been published in the last four years that I haven't had time to read because of my obligation to Crip's Column. However, if I could turn back the clock, I wouldn't have wanted to change the last four years. I'm so pleased to have had the chance to create this column and grateful to the New Statesman, both for asking me to write it and allowing it to continue for as long as it has.

At this point, I would like to issue an apology. As far as I'm aware, almost all my friends and family are completely unaware that I write this column. I've never told them about it. When this column was first commissioned, I only mentioned it to one of my friends and that was because her husband used to work for the New Statesman and she would have found out anyway. I didn't let on to any of my relatives. My parents only found out by chance when they saw my photo in the magazine. My brother didn't hear about it from me but from a mutual acquaintance who happened to see my column.

If any of my friends or relatives have come across my column and feel offended that I didn't tell them, I apologise profusely. I had to keep you in the dark for a number of reasons. I was worried you might think I was an egotistical self-publicist. I've always doubted the quality of my writing and I wasn't sure if my columns were worth reading. And most significantly, I find it difficult to write about myself if I'm aware that people who know me will read what I have written. This may sound odd but I have fewer qualms about complete strangers reading my work than people who are close to me. I suppose it's because the opinion of strangers doesn't matter to me whereas the views of people I care about do. Now that I am bringing this column to an end I feel more comfortable with the idea of you reading it.

So what are my final reflections for you, dear reader? What messages do I want to leave you with?

I know there have been occasions in my articles when I've grumbled about the negative aspects of being a disabled person in early 21st century Britain. This country is far from being a paradise for disabled people. According to the Office for National Statistics, half of disabled adults of working age are unemployed compared with 23 per cent for the general population. Radar, the Royal Association for Disability Rights, estimates that 44 per cent of disabled young people are not in a job, education or training, almost double the figure for their non-disabled counterparts. A survey by Leonard Cheshire Disability suggests that if you are disabled you are twice as likely to live in poverty as non-disabled people. One in 10 disabled people say they have been the victim of hate crime.

Nevertheless, life for disabled people on the whole is better now than it has ever been. Our lives have been transformed by anti-discrimination legislation, new technology, more stringent monitoring of social care providers and more accessible public services. In the early 1980s, when I first became disabled, I would often go shopping in my local town centre and not see another physically disabled person. Now I almost always do. We've become more visible, more integrated, more part of our communities. Leonard Cheshire Disability's annual review last year showed that many disabled people believe their situation is getting better and reported improvements in their experiences. Problems are simply "not as bad as they used to be".

Obviously, there's no room for complacency, as the statistics I've given clearly indicate. Campaigners are mostly sceptical about whether the government will meet its target of eradicating disability inequality by 2025. Public spending cutbacks will make life harder for many disabled people in the coming years. But in my final column I want to applaud the significant progress that has already been made towards achieving the full inclusion of disabled people in society. Today disabled people are more aware of their rights and are more prepared to challenge prejudice and discrimination when it occurs. On average, we face fewer barriers and enjoy more opportunities than ever before.

The second point I want to make is this. As well as a more accessible, less discriminatory country, I would also like to see a cultural change. We live in a society which prizes independence from the help of others. We are brought up to think that doing things for ourselves is always good and that having to rely on other people is bad. We are taught the importance of standing on our own two feet (in both the metaphorical and literal sense) from an early age. In such a society, tetraplegic people like myself who need assistance with virtually every task can regard their reliance on others as a source of shame, even humiliation. Valuing independence lowers the self-esteem of those disabled people who are very dependent on others.

It also leads to some disabled people spending an enormous amount of energy trying to accomplish tasks on their own when they would be much better off asking for the help of a human being. When I was a teenager I remember the frustration of trying to read a book using an electronic page turner. It kept turning over two pages at once or failing to turn over at all. Asking a human being to do it is much simpler and more reliable. In recent years, I have come across healthcare professionals who have tried to get me to return to using a battery-powered chair on the grounds it would make me more "independent". In actual fact, a small manual chair is not only more suitable for my current lifestyle, but I can move around more quickly and easily if a PA pushes me in a manual chair.

The ironical aspect about our emphasis on independence is that all of us, including able-bodied people, are dependent to a lesser or greater extent on others. No one, not even rich people, can supply all their own needs. In his book Democracy in America, Alexis de Tocqueville criticises those who are deluded enough to think they can. He writes: "Such folk owe no man anything and hardly expect anything from anyone. They form the habit of thinking of themselves in isolation and imagine that their whole destiny is in their own hands."

If we want to stop disabled people feeling inadequate, we need to change our social attitudes to recognize the value of depending on others and being depended upon. As Susan Wendell points out, this would also reduce the fear of becoming dependent in our old age, a condition most people, including the able-bodied, will reach. Barbara Hillyer Davis argues that non-disabled people can learn from the reciprocity involved in the relationship between disabled people and their carers - "reciprocity involves the difficulty of recognizing each other's needs, relying on the other, asking and receiving help, delegating responsibility, giving and receiving empathy, respecting boundaries". Instead of celebrating independence, we ought to be celebrating our interdependence. In the words of Mark Vernon: "To be human is to be, at once, independent and dependent. We can only become independent because of our dependency, and vice versa."

Now for my third message. Disability has an impact not just on disabled people but also on their family, their friends and their colleagues. When someone becomes disabled, it presents a challenge both to that person and to their loved ones. Those close to the disabled person have to go through a process of adjustment just as difficult as the disabled person themselves. Carers UK estimates that there are six million unpaid family members in this country providing support to elderly and disabled relatives. Often they have to give up their jobs, become socially isolated and suffer ill-health because of their caring responsibilities.

For much of my life I have been assisted by my parents and I want to dedicate these columns to them. They are the best parents anyone could ever hope to have. After I became disabled they were determined that I should lead as normal a life as possible and continued to have the same expectations and aspirations for me. They have always encouraged me in my endeavours and always had confidence in my abilities (more confidence than I have had).

Over the years, my parents have sacrificed an enormous amount of time and energy to support me. It's impossible for me to tell you everything they've done to help - it would require a book larger than War and Peace. When I became disabled, my mum gave up working for five years so she could devote herself to caring for me. She got up a number of times to help me every night for 11 years until I started university (and still does the same even now at weekends). My dad has always been happy to act as my chauffeur - it was he who drove me to my first job interview at the BBC and had to change a tyre on the hard shoulder of the M25 when the car developed a puncture. Every week he spends a considerable amount of time helping me with the paperwork involved in employing my PAs/carers. On the occasions I've been admitted to hospital - such as when I caught a nasty case of flu or when my bladder stopped working - my parents have been close at my side. Through the good times and the bad, they have always been there when I needed them. Without them, I wouldn't have achieved any of the things I have.

Finally and most importantly, I want you to know I don't see my life as tragic or unfortunate. Debbie Purdy, the assisted suicide campaigner, was right to observe that when you become disabled, the world changes shape, but it doesn't get any smaller. Of course, there are elements of being disabled that I dislike. I miss being able to use a pen, especially as my teachers used to compliment me on my neat handwriting. I miss the feel of a book in my hands and being able to flick through its pages. And I miss being able to give people a hug. (Strange as it may seem, my inability to walk doesn't bother me. Walking is just a means of getting from one place to another and most of the time I can achieve that in my wheelchair.)

However, most people face obstacles of one kind or another during their life - unemployment, debt, addiction, bereavement, domestic violence, divorce, a business collapse or house repossession. As the Russian proverb says, "Life isn't meant to be a walk in an open field". In my case, the obstacle just happened to be becoming tetraplegic.

I've come to recognize that my disability has helped to shape my character and make me what I am. Amongst my friends and relatives, I'm known for my sense of humour and, in my opinion, this has developed at least partly as a result of becoming a wheelchair user. Humour has its roots in our weaknesses and inadequacies so disability and laughter are natural bedfellows. As that great comedian and philosopher of our times Dara O'Briain once commented: "There's no laughter in Utopia".

Becoming tetraplegic has given me a determination to accomplish as much as I can in my life. At times I've felt driven to live like a modern day Stakhanov, the Soviet miner who was more productive than any of his counterparts. This is partly a result of a desire to prove myself and partly because I feel the need to "carpe diem" or "seize the day". I wasn't surprised when Tanni Grey-Thompson chose this as the title for her autobiography. Suddenly becoming a wheelchair user when I was six years old brought home to me at an early age how unpredictable life is. I was the only person I know who was not surprised by Princess Diana's fatal car crash. You never know what might happen to you tomorrow. It could be something wonderful like gaining your dream job or making a new friend - or it could be something totally unwelcome.

In the 17th century, Dutch artists would often include a "memento mori" in their paintings - a ticking clock, an hourglass, a skull or pieces of decaying fruit. For me, my disability is the ultimate "memento mori", a constant reminder of my mortality. It makes me very conscious of the passing of time. I hesitate to tell you this because I don't want you to start associating disability with coffins. My point is actually a positive one. The philosopher Alain de Botton recommends that everyone should walk around a cemetery regularly because it helps you to get your priorities right. Every day my disability makes me aware of how fragile and precious life is. I don't want to waste any of my time on Earth.

The greatest benefit of becoming tetraplegic is that it's made me realise what's important in life. Today's politicians are keen to measure the public's happiness levels and increase our sense of well-being. If I were not disabled, my life would certainly be simpler and I would have more opportunities, but I wouldn't be any happier. For me the secret of happiness can be summed up by a comment from one of the characters in Spooks: "Happiness isn't getting what you want, it's appreciating what you have". How happy you feel depends essentially upon your outlook on life, not on external factors like whether you can dress yourself or make a cup of tea.

In fact, I feel incredibly lucky. I have a fantastic life. I have a comfortable flat, a rewarding job and enough money to meet all my needs. I have a team of kind, thoughtful and hard-working personal assistants. Above all, I have relatives and friends who love me and care about me. I would say my quality of life is higher than that of 99% of people on this planet. Another tetraplegic, the scientist Stephen Hawking has said: "I think of myself as fortunate because, although I cannot move, in my mind I am free". I feel exactly the same. I've so much to be grateful for. I'm very glad I'm me.

One last thought before I go. I've been writing this column for four years now. It's quite possible that someone out there began reading my articles in 2006 as an able-bodied person but has now become disabled. I feel I ought to finish by giving anyone in this situation some advice but frankly I'm nervous about doing this. I don't have all the answers to how to live a successful life as a wheelchair-user. I haven't even worked out what all the questions are. What I will do is express a wish for you based upon the words of Reinhold Niebuhr. I hope you will acquire the serenity to accept the things you cannot change, the courage to change the things you can, and the wisdom to know the difference.