Live your potential

Living with dignity

One of the familiar phrases in Spinal Units is "leave your dignity at the door". Spinal cord injury with its paralysis, its bladder and bowel complications means dignity is hard to maintain when you're in hospital, especially at the beginning of your stay. You are prodded and poked and invaded. There is some advantage in not being able to feel all the prodding and poking but it's still deeply shocking.

The debate about assisted suicide on Radio 4 and in the papers this morning reminded me of my time in the hospital. There was a round-table discussion on the radio about the importance of living with dignity: how if you did, then life was worth living. But the idea of dignity, I have discovered, is hugely subjective. My attitude has changed dramatically, largely because it's had to. Well, I suppose I've chosen to live with less dignity in some ways: I go out despite the risk of leaking, I travel despite the risk of falling, I go to venues with stairs despite having to be carried. I know some people who refuse to allow themselves to be carried, some who stay at home because they have once fallen in public. But dignity is a very personal thing. Everyone has to make their own choice about what they will and will not accept. Perhaps it's to do with pride. Perhaps it's also to do with the ultimate end: if I want to go to a show and the only way to get there is to be carried down the stairs, then I'll do so. The means (in that case) justifies the end.

And my attitude to dignity has changed as I've acclimatised myself to new experiences. The first time I asked a stranger to pull up my trousers was horrendous. Now it doesn't bother me (as much). I've explored (and continue to explore) what I'll tolerate: I don't mind being in the hoist at the swimming pool any more. I don't notice people's stares as much. It's an ongoing process for me, but my dignity is my own. I don't want anyone deciding that my life isn't worth living any more because they think my life lacks dignity.

Make haste slowly

 
I had my first interview for six years yesterday. Since leaving the Millennium Commission back in January 2003, I've run my own business and have been dealing with the impact of becoming paralysed. Sitting in a room with five interviewers was an experience good to get back. Waiting in the office, surrounded by the chaos of a business with the stationery cupboard and photocopier and ringing phones brought back good memories. I miss being part of an organisation.

I had applied for a Board level post because at the moment, that's what I want: a day a month when I know all the dates in advance. It's paid, I get expenses and it's easy to work around childcare. I love being a hospital governor and Salisbury Hospital is very close to my heart, but all I receive is travel expenses. It's not enough.

I've changed in many ways since my last interviews. I'm older, perhaps wiser. And I'm calmer it seems. I have a different attitude toward time, and a different attitude toward fate. An acceptance of what will be, will be.

This was tested to the limit yesterday. My alarm failed to go off so instead of getting up at 6.30 to be at the London venue by 11, I woke at 8am. I couldn't find my suit trousers and I only had one shoe. I got stuck on the drive to the station behind a line of slow-moving traffic. I left the details of where I had to go at home. When I tried to put on my tie in the train, I discovered that my neck has got thicker (transfers? age?) and I couldn't fasten the top button. And rather than panicking or driving madly, I smiled in bemusement at this comedy. I simply can't get dressed much faster. I can't run back upstairs when I forget something. I can't sprint to the taxi. I can only move at the pace I can move.

I think months of full time bed rest as well as being paralysed has taught me a sense of acceptance. This doesn't feel like a passive state of resignation. Rather, it's a realisation that I have a choice about how I react to situations and that there are only certain things I can change or control. Although I will be changing my alarm clock.

Rose tinted perspectives

I'm still mulling on this idea of dependence. I was on a three day course at the weekend. I was cherished. And I realised that I enjoyed being looked after. Yes, I could have got my own coffees but I've not yet mastered the wheeling safely with hot drinks technique. I could have pushed myself up the steep hill but I was shattered from early rises.

My feelings about asking for or being offered help change. I suppose all I need to do is be aware of how I'm feeling at the time. Sometimes I do want help. Sometimes I don't. Sometimes I want to be independent and do everything for myself. Sometimes I don't. There's no right or wrong way of behaving: I just need to do what's right for me.

And I need to be aware of the impact of my choices. By not getting my chair out of the car, my damaged shoulder stays pain free. Yet now that I do get my chair in and out, the increased pain is balanced by the increased freedom. I no longer need to wait for help: I just hop out the car when I arrive at my destination. This liberation makes me question choices that have been coloured by the perspectives of healthcare professionals: my occupational therapist emphasises the need to reduce exercise in order to lessen exhaustion. This reminds me to ensure I balance such perspectives with those of others, especialy wheelchair users. There are many viewpoints out there and this is still a very new world for me. I've got a lot to learn.

Dependence

The snow and various conversations have got me thinking about dependence. I've written before about my independence, the fact that I have full use of my arms and that I don't need a carer. I've commented how lucky I am.

And yet how independent am I? I'm stuck in this weather. If I fall outside, I cannot get back into my chair. I can't manage steps or stairs. Hoovering is hard as is stripping beds and washing floors. Without an occasional cleaner, I can't keep the house tidy. Without strangers helping me down steep pavements I can't cross the road. Without a friend to push me I can't get through the snow. Without a special beach chair, I can't wheel on the sand. I'm not independent.

I fear increasing dependence. I fear my shoulders giving way and needing a carer. And ironically, I have allowed this fear to increase my dependence. I choose to do less in the hope of preserving my shoulders. I choose to ask strangers to put my chair in the back of the car rather than face the effort and strain of dismantling it myself. I choose to ask my children to go upstairs to get things for me rather than transfer on to the stairlift. I allow people to make me tea when I'm sitting on the sofa rather than getting up and making it myself.

Of course there's a balance. Sometimes it makes sense to ask people for assistance. Without it, I simply cannot get over steep pavements. I cannot move in the snow. And do I want to be truly independent? I like being part of a community where we depend on one another. I'd never manage the school run juggling act without the community. I like this interdependence. Yet I've got the balance wrong. I do less than I could. And I may inadvertently be causing myself greater health problems by doing less. I'm less fit. I'm less flexible. 

But I don't want to go to the other extreme: refusing all help. A friend who does live alone, who is extremely independent, who never asks for help would rather his life were other than become dependent. "As soon as my shoulders go, I'm booking my one way flight to Switzerland". But I can become less reliant on others. First step, get my chair in and out of the car. My first New Year resolution.

Snowbound

 

I am snowbound. I have been stuck inside the house for days. And now I understand how people can die at home in bad weather. I'm fearful of pavements. I'm alarmed by ice. My wheels spin in the snow and I go nowhere. I went out to the car yesterday and got stuck. I'd thought that if I lifted my front casters off and balanced on my back wheels, I'd be fine. But a combination of poor back-wheel balance and deep snow left me trapped. I'd still be there if my daughter hadn't wondered where I was. 

It's given me a deeper sense of the implications of being paralysed. This is the most disabled I've felt for a long time. I'm trapped by the weather and appreciate why people who are unsteady on their legs are reluctant to leave their homes. And I'm struck by how easy it would be to freeze to death: a slip when walking to the car, falling... It's so cold I don't think I'd last long in the snow. And because I can't safely get to the car, let alone further, my horizons have collapsed to the four walls around me.

The cold takes me back to basic needs: the need to stay warm and sheltered. I just want to stay in bed with my three duvets and read. I wonder how wheelchair users in cold countries cope. The kids are thrilled that their schools have been closed. I don't share their enthusiasm. Snow should be about playing and fun and snowball fights and sledging and excitement. Being a (literally) sitting target in a snowball fight loses its appeal after a while. I've lost the joy that comes with the cold. I simply want to hibernate.

Avatar

   I joined the crowds to watch Avatar the other day. It was a surreal experience wheeling out after watching a movie where the hero is a paraplegic marine. I felt exposed in a way I rarely do.

I didn't recognise Sam Worthington, even though I'd seen him in Terminator Salvation a while ago. I thought he really was paralysed. His legs were thin, his transfers effective, he looked comfortable in his chair. And he has a lot of screentime not being an avatar (you have to see the film) - far more than I'd expected. He falls and can't get up; he revels in the sensation of his toes in the sand (that struck a real chord); he thrills in his new legs and can't stop running. It's well-observed.

Yet there are elements that made me feel uncomfortable, such as when one of his colleagues drags him backwards by his chair because she wants him to stay by her side. I suppose that could happen: I've found myself been unexpectedly pushed up a slope. I'd hope that people would realise that my chair is part of me and that to push it is invading my space. But in reality people don't realise this, people do sometimes grab my chair without my asking. So maybe the scenes in the film are true to life.

And the film brings a little of the reality of paraplegia to a massive audience in a way no other film has done before. So whilst it's not perfect, it raises awareness. It shows that it's possible to live a life pretty similar to those around you. It exposes some of the prejudice you might encounter in a wheelchair. No commercial film is going to be able to convey what it's really like and most that show paraplegics have flaws: the lawyer in Notting Hill, Tom Cruise in Born on the Fourth of July... But isn't it better to include a wheelchair user even if the actor themself is not disabled? I'd rather see an able-bodied actor using a wheelchair on screen than see no wheelchairs at all. 

Standing up, looking down

  
Language is a useful tool for understanding attitudes. I've been pondering on the height difference I now experience in a world where almost everyone is taller than me. And it occurs to me that some verbs reveal how patronised I can be as a wheelchair user: people look down on me, I can't stand up to them... I've noticed this whilst watching the Channel 4 series Cast Offs about the six disabled people on an island: how Dan, the wheelchair user, is always sitting down (of course).

The idea and meaning of standing has been on my mind because I've been criticised and judged by acquaintances in recent weeks for some of my decisions. The vehemence of the attacks have shocked me. Talking with friends makes me wonder whether the issues are more complicated than they seem (aren't they always?). Are people bringing their subconscious prejudices to bear? Do they view me with pity/misunderstanding/disgust because they see me as a victim? Do they see me or my disability? Do they feel they have more right to put me down because I can't stand up to them physically?

It's not something I've experienced before and I'm not sure how to process or even express my thoughts. I'm finding this hard to write - I simply can't find the words. It's a difficult issue to address because I myself am not that comfortable with being disabled. I'm still coming to terms with the reality of my situation and haven't yet fully understood the complexity of feelings I have about it. So it will be hard for me to address with others, especially since (I imagine) they will give the kneejerk response "of course we don't view you differently".

I remember a comment a friend made when she heard about my accident: she said it could not have been worse if I was dead. Her words threw me. But they give a glimmer of insight into how people might now see me, how they might not see beyond the wheelchair. And the height difference is an issue: reading a British Medical Journal article about bullying, it seems that shorter people are more likely to be victims. I'd be interested to know what others think.

Marginalised

 
In the last few weeks I've been exploring two new (and highly) publicised museum redevelopments: the Ashmolean and the new Medieval and Renaissance galleries at the V&A. Both of these are lottery funded (both by the Heritage Lottery Fund); both are fabulous; both should be fully accessible.

I've written about this issue of accessibility before: one of the key criteria for winning lottery funding is that any building should be accessible to all. To my mind, as someone who used assess bids as well as advise applicants, and now as someone directly affected by access, meeting this criterion should be integral to any building development. An access specialist should be involved with the project right from the start and stay involved to the very end. Sometimes this happens. The proof is in the building itself: does access seem integral to the design or has it been bolted on at the end; is access a concession to getting the cash or a driving force behind the project? You can tell as soon as you enter a building: what kind of doors are there (heavy or light, automatic or manual); what's the signage like (the lifts are always a giveaway - are there Braille buttons? Are the buttons high or low? Is there a speaking guide that tells you which floor you're on?); does the ticket desk have one high counter or a low section? I've always been interested in this. Now, however, I have a particular perspective.

 So I was curious to see how each of these lottery-funded developments scored. The new Ashmolean is breath-taking in its conception. I've loved this strange Oxford museum for many years. It's got a wonderfully eclectic and eccentric collection. It has a Matisse, Picasso and Kandinsky hidden away at the top of the building (the Kandinsky is one of my favourite pictures and its remoteness means I can stare at it for hours without interruption). It has a rare Stradivarius guitar and the Messiah violin. There's the Alfred Jewel and Guy Fawkes' lantern. There really is something for everyone. The £69m development has created 39 new galleries, added a new rooftop restaurant (these always seem to feature in new lottery developments) and opened up the inside of the museum to create a fresh, light and stunning atrium. The architect, Rick Mather, has done a fabulous job. But where were the access advisors? For this kind of (largely public) money, the public should receive a model of good practice. This isn't. Access is fine, don't get me wrong. But it doesn't feel integral to the design. The cafe has heavy wooden doors, signage is poor, the shop is hard to navigate, the tills are high. Worst of all, some of the artefacts are impossible to see. In the musical instruments gallery, there's a cabinet which is inaccessible from one side. A ceramics display reaches toward the ceiling. I don't think it's unreasonable to expect to see everything in the museum. To me, lottery cash means a building must be accessible to all. The Ashmolean isn't.

The V&A presents a different challenge. For one thing, this is only a partial redevelopment: only the Medieval and Renaissance Galleries have been completed. It's been a long time coming: I've been visiting the V&A for years and the hoarding always seems to be there. So I was thrilled to see the new space, a week after it had opened. The redevelopment is not a re-imagination in the style of the Ashmolean. It's more of a re-configuration: pieces have been moved from all over the museum to be presented as a thematic whole. And it's wonderful to see the incredible range and beauty of the collection (and sobering to be reminded of our rapacious past, as I admired a near entire Italian church that had been removed from Florence). But here again, access doesn't seem to have been integral to their approach. Yes, this is a new gallery added on to an old space so perhaps it's unfair to criticise the high ticket desks. However, I was appalled to see that the lifts for the new space weren't finished (and no one knew when they would be ready). So rather than staying within the space (both thematically and physically), I had to wheel out to another lift, go to the sixth floor, pass through the ceramics gallery (well worth a visit but not part of my plan) and then go down to the second floor.

The message I received from both museums was that access was something that had to be achieved, that access was secondary to the experience, that access was required rather than desired. Good access should be so seamless that it's not noticeable: everybody should be made to feel equally welcome. I didn't. To open a new space without functioning lifts summed it up perfectly: the new gallery must open on time even if it means that not everyone will be able to appreciate it fully. After all, most people won't be using the lifts anyway, will they?

Besuited and not booted

I rejoice in the way unannounced encounters can bring about unexpected changes. A couple of weeks ago I was at Salisbury for Prince Edward's visit to the Spinal Unit. My eye was caught by a strikingly attractive guest in a wheelchair. He looked fabulous in a perfectly tailored suit.

I have a perhaps higher than average interest in clothes by male standards. I feel better in well-made garments and find that clothes simply don't look as good when you're seated, not to mention the challenge of keeping said clothes clean as I wheel about in the rain. Suit jackets are a particular problem as they ruffle up and don't hang well. I'm frustrated by the lack of male designers who seem interested in the field (and it's a big market!). People have enough preconceptions when they see me in a wheelchair: it's great when what I'm wearing doesn't add to those (at worst) or changes assumptions (at best). And then there's the simple feeling of well-being that everyone has when they know they look good.

I approached said attractive man. "I have to say, you look amazing. Where did you get your suit?" It turns out he knows a tailor who used to work on Saville Row and who now works from home. "A bespoke suit should cost £1,200. This guy charges £600". I've started saving...

Fit and fitter

I rowed for the second time today. After last week's excitement, I was looking forward to another session, despite the anxiety of whether I could make it to Brunel and back between school run deadlines. But I wasn't prepared for the sheer exhilaration I felt. My rhythm had improved. My posture was better. My breathing was deeper. And I rowed more than twice as far in less than twice the time. Last week, 1500 metres in some 15 minutes. Today, over 3km in 25 minutes.

To see the metres on the dials racking up was a great feeling. But what thrilled me the most was my breathing. After years of rowing and running and fitness training, my lungs are pretty big. Yet post accident, I haven't been able to breath deeply: the intercostal muscles have been weakened and I remember with horror the assisted coughs I was given in hospital (if you want to understand more about the medical aspects, read the article on the apparelyzed site).

It's not so much the feeling of strenuous exercise that delights me (though it's pretty delightful). It's not a returning to my old, pre-injury body that motivates me. It's the realisation that my fitness is growing, and growing fast. One of the main causes of early death in people with spinal cord injury is heart disease and respiratory problems. And every minute I'm rowing, I feel like I'm improving my odds. Yes, I have a spinal cord injury. And yes, I want the fullest, longest, richest life I can have.