My wife, an international aid worker for the Red Cross had been away for a couple of months. Unexpectedly, there was a family emergency. Now I needed to join her in Australia,.
There was one thing I had to do before I left. I had contracted a peculiar blurring of the vision in my left eye, (as well as, if I admitted it - which I didn’t, a paling of the image) together with a disconcerting intermittent buzzing feeling in the head which lasted only fractions of a second. I had decided to see the doctor about it: maybe it was a brain tumour; but of course I assumed it was ‘just an eye problem’. (While I’d been in Oxford, the previous week, I’d been to see a GP friend, wanting confirmation of that. He said that it was some form of optic neuritis.} But what was causing it?
Now I was off to Brisbane. I kissed my colleague Monica goodbye, feeling grateful to this funny, stern young woman for baling me out emotionally, and caught the tube to Old Street (Victoria Line, change to Northern Line at Kings Cross). From there it was just a short walk (writing that now is sad but "a short walk" is nice to remember) to Moorfields Eye Hospital. I needed to know what was going on inside my head. I gave my name to someone behind a glass partition, and settled down in Outpatients to wait. My flight was the next morning. I just had a bit of shopping to do, so I had the whole afternoon and the Guardian. I finished the paper, and the afternoon, not without more and more frequent visits to the glass partition with hostile glances at people who appeared to be jumping the queue. Didn’t they know how urgent was my case? So I gave up. It would probably sort itself out.
When I got home after an incredible holiday -- not without some confusion arising from the uncertain state of my vision, I went back to Moorfields. They gave me a variety of tests. My instinct is always to endow the consultant with my complete confidence. This one I felt I could trust. She asked me lots of questions, filled in forms, and did some familiar coordination tests that had been done when I had complained of minor symptoms, but also one which involved the screen timing my reactions to the appearance of images on it. She said I had optic neuritis and that amongst other things it could be MS. I felt relieved to have some kind of diagnosis, but overwhelmed too. We made an appointment to look at the results of the tests, and I supposed, for a definitive diagnosis.
I delivered myself back to Moorfields, feeling that they’d finally tell me what was wrong and sort me out. I was ushered in to see a different doctor. While he started out on the same series of tests that I had had before, I became increasingly disconcerted. Eventually, when he asked me to look through exactly the same piece of apparatus as previously, I told him that I’d done all this. Shamefacedly he admitted that they had lost my notes. When I got home I cried: one of those roars of pain and rage in which you notice your shoulders shaking uncontrollably.
The next time I turned up at Moorfields I was met by a troika of dignitaries including its chief administrator. I had assuaged my tears with a furious letter of complaint. How could they treat anyone like this? It was hard enough, but possible, to live with the unlikely diagnosis. "Surely.", I had thought, "it couldn’t happen - it’s bound to turn out to be something else. And if it is MS, then we’ll have to deal with that once we know." But their incompetence amounted to torture. It was like telling the infantryman, subjected by foolhardy generals to battle, and returning home from the Somme, that he’d been dreaming. He hadn’t fought the battle yet: he’d got to do it all over again.
So I went through the same series of tests and back again two weeks later to get the result. I think I knew what it would be, but in those days, I didn't have the Internet, and so could hope it was something else. Tio hadn't usually come with me on my medical appointments. But she did this time. I imagine that she sensed my trepidation, and that she too feared it would be bad news.
With no ceremony, the consultant told me, “You have Multiple Sclerosis". No counselling was offered, although I think he mentioned the MS Society. I remember Moorfields as being set in a fairly ugly part of London. But that might be because of the associations. Anyway, we found somewhere for a coffee and sat down to try to absorb the shock. We felt comforted, but a little dubious, by the ‘benign form’ diagnosis - many are told this, presumably to lessen the blow, without being told the likely future course.
But there was no escaping it: I had been diagnosed as having MS. Who could I turn to for help in coming to terms with it? The MS Society was an obvious first port of call. And then I looked, for the first time as someone with MS, at their advert on the Underground platform. If you're anything approaching my age, you've probably seen them somewhere. I'd seen them before. Strong, effective stuff. Images of people with parts of their body being ripped off.
Now, I was horrified. This wasn't help: this was terror. And the terrorists were the MS Society. "My own" society, ripping me to shreds. Turning me into litter, to be picked up please, by the conscientious, and tidied out of the way. Meanwhile, I was needing the opposite: to feel good about myself. If it was up to the MS Society, I'd still be feeling very bad. Their next campaign featured despairing, helpless men with cradling arms holding someone up, still featuring the ripped paper motif, it was called "A hope in hell". Who was putting us there?

Telling my family

Not yet being obviously disabled by the MS I imagined that I wouldn't have to tell all my friends and family. I thought, to begin with anyway, that I would not tell my elderly mother. I realise now that this was silly. I needed her support. Just as my children need my support: although I am disabled. I’m still the same person. She was still my mother, despite nearing 90 years old.
My wife Tio was and always has been kind and encouraging, although every now and again she has to remind me of the limitations of my condition and of the way it affects her. My son and daughter Simon and Zoe,19 and 18 years old, did not panic, although I could imagine their mother Claire, my former wife, being fairly upset.
Zoë came to see me. She had just finished her A-level biology, and so was able to tell me in graphic detail the function of myelin.
“You know your nerves”, she said
“I’m fairly well acquainted with them, yes. They send messages round your body, don’t they? Round your mind too, I should imagine.”
“Let’s leave minds out it for now shall we”, she said, “God knows what you’ve got on yours at the moment”
(She had an idea, not entirely wrong, that in those days my head was like a cartoon strip filled with women who I was chasing.)
She continued her lesson: "Nerves are covered with fatty stuff called myelin. That's what gets damaged by MS, I think.”
"Thanks Zoë”, I said, “You did a lot better than the consultant”. (She was right. Nerves are covered with a protective layer of myelin, called the myelin sheath, which gets damaged in MS., causing slow or no delivery of messages to and from the central nervous system to various parts of the body).
Simon was just as he always is: his loving self. Fairly soon after the diagnosis, I took the train up to Manchester to see him and my grand-daughter (she and her brother call me Poppy: I chose the name after reading about the beautifully described friendship devised by John Le Carré between his Perfect Spy and his opposite number, codename Poppy.). When we arrived at Piccadilly for the return trip, I found I had forgotten my shoulder-bag. By this time, I was having what some people euphemistically call ‘trouble with the waterworks’.
Simon had worked this out, and asked “Won’t you need it? I’ll go back for it if you want.” I replied, optimistically forgetting my condition, and again like an elderly ‘mustn’t grumble’ kind of person, “No, it’s OK”. Well, it was not OK. Trish as usual was her generous self and rescued a sopping wet, bedraggled Poppy from Euston station, and revived me when I got home.  
I had to tell my sisters Kate and Viv. We had dropped Viv back home in Bristol after a family occasion, and we were in her garden. Their looks of shock and distress took me by surprise. I suppose I should have got them to sit down first. I was flattered that they felt the bond between us so strongly.
The other member of my family I had to tell was my Aunt Betty, "Aunt" to the family. She was my mother's younger sister and she was very dear to me and my sisters. When we were children, she used to come for the weekend laden with preposterous gifts and when we were little she sang to us in our bath. I remember her trilling the frightening song "Poor baby has gone down the plug hole".
Now, she was the only other member of the family living in London, and I used to visit her in her St George's Square flat. She had had a minor stroke and had become a sweet little old lady. Tricia loved her too, and together we saw more of her. She had been a catering manageress, and she enjoyed entertaining us in her Pimlico flat. I asked her round to my house in Brixton. While I waited for her, I watched from my first floor bay window. She scuttled up the street in fits and starts checking the houses for their numbers and, I think, for whether she recognised them. At last she turned into my porch, and rang the bell.
She was a little bit fazed by my news, but enjoyed her cup of tea and cake. The next time I saw her, she told me that one of her Australian friends visited London especially to see a homoeopath, who was very well recommended. I did not have much time for homeopathy – after all, can drinking something diluted to a negligible concentration really do you any good? – I preferred stronger stuff. But to humour her, and because I fancied the idea of a trip with Aunt, I agreed to visit Mr Jenkins in Hastings.
We arrived at the Jenkins practice, run from his semi-detached house. An ageing, scruffy hippie dressed in a crumpled shirt and shorts answered the door. Mr Jenkins did not inspire confidence, and nor did his consulting room. This Merlin-like figure had surrounded himself with mounds of tiny bottles of water interspersed with dried- up foliage. We found chairs amongst the detritus and went through the motions of a consultation.
I'm afraid Mr Jenkins believed every word of the fictional story that I wove for him. After all what difference was it going to make if my father had been a circus performer not a businessman, or if in my youth I had suffered from a plague of boils, not an inflamed gut? From his ‘surgery’ bay window I watched an interesting array of mothers bringing their children home from school to identical semis in the street
Asking himself which of his potions might be best for the nervous system, Jenkins rooted through his pile of bottles. I turned my thoughts again to the display of suburban houses across the road. I was imagining a procession of elderly ladies beating a path to his door from houses like these or from as far away as Sydney, New South Wales, only to be palmed off with a bottle, green or brown depending on the complaint, of the flat water to be taken “one or two drops under the tongue per day" for the placebo effect. I'm sure it was strong. I kept Mr Jenkins’ bottle in my kitchen for a couple of weeks and tried a few drops per day. They did me no harm.

Telling my friends


Jogging yourself out of it

Those days I spent most of my time voluntarily editing a left wing magazine, and proof reading and copy editing for various publishers to provide some kind of income. (It was the early 1980s, Ken Livingstone was running the Greater London Council, and like many of my friends, I felt there must be room for our publications in the future.

But sitting at my Craster Road desk, I felt I should take some exercise. Unlike the modern, bloated industrial fashion for gymnasium machinery, the enthusiasm at the time was for running. My morning run took me fifteen minutes before breakfast – a few minutes more if I bought the paper on the way back. It took me down the street, to a path through the Tulse Hill council flats, and into Brockwell Park. The rolling grassland park, complete with a modest stately home, Brockwell Hall, was created by a wealthy glass merchant in the early nineteenth century, and bought for the public on the initiative of a local MP. I ran past a series of ponds to check out the coots and Canada geese. Railings kept them safe from the public, and they built nests and reproduced at quite close quarters with walkers, children and dogs. I grew to recognise two lady dog-walkers who would stop for a gossip by the ponds.

Over a number of years of morning runs following my diagnosis, I did not notice much difference in my fitness apart from tiring earlier, and the slightly greater reluctance of my legs to put themselves where I wanted them. Both things that could be put down to getting older, or less fit, as well as to the MS. Sometimes, I would break into a walk, maybe to pass the time of day with the ladies. Then one morning, returning past the flats, I tripped and fell.

Propping myself up against some railings, I sat on the pavement and took stock. Indignantly, I examined the paving. I had read stories about people suing councils, accusing them of responsibility for sidewalk mishaps. A few steps back I could see where I must have caught my toe. One of the slabs was slightly raised. But only slightly. Even in my state of shock, I reasoned that the case would not stand up. “A middle-aged man with MS, your Honour, is bound to drag his feet !”

I had grazed knees, and my left hand hurt. I examined it. One finger protruded from the others at an odd angle. Heaving myself upright, I walked up the road to the paper shop, got the paper, and showed my finger to the Indian owner, Sachi. There were soon several of her family gathered round, proffering advice. Sachi’s husband came in. He was shaping up to shove the finger back in place. I declined the offer, thanked them, and ran away – probably walked, actually.

Once I was home, I called Tio. I must have sounded shakey.

“Is anything the matter?”

“I was out for a run and I think I’ve broken my finger”

“How did you do that?” she asked incredulously. But then she stopped asking questions because I had dissolved into tears. It was like telling my mother I had fallen off my bike and grazed my knee. The shock had got to me. It remained a shock when I occasionally fell over, but this was the first time. Tio no longer asks me how. She knows.

A minicab took me round to King’s College Hospital A&E. I was admitted straight away. I was shocked again. The ward was full of old men puffing away at cigarettes. Apparently, in that period of history the idea was that it kept them calm. But what about the other patients? What about me? What about the nurses? Tio turned up with provisions. She was shocked by the smokers too. Happily, she had brought a radio, and so I could avoid both the inanities of ‘hospital radio’ and what seemed the interminable wait for an operating theatre slot (no ‘modernisation’ in those Thatcherite days). They came for me at 10pm. At 10 the next morning Tio was escorting me to the main exit. A young man stumbled down the stairs into the lobby. I recognised my young surgeon. He had been working all night.

Moving in South London

The fatigue I had first noticed when I was away became more obvious once we had moved to Harborough Road. I could neither stand nor walk for long, even using a stick. The physio told me to contact the wheelchair service. As with all gleaming new toys, the wheelchair, when it arrived, invited me to try it out right away. There was a superb French delicatessen, run by an avuncular ex-sea captain, at the end of the street. It would have been pain to walk it. I decided to ride there in my new wheelchair.

The pavement looked bumpy, so I launched into the street. It felt very comfortable not to be standing up, and I was encouraged by my first push. But soon I ran down the natural slope of the road into the gutter. Pushing myself back up the camber I found that I could make stately if hazardous progress along the centre of the road; but uh-oh: anything - maybe a road repair - could easily put me off-line and down I went back into the gutter on one side of the street or the other. I returned home exhausted, but with a bag full of croissants and with increased respect for those parathletes you see on televised track events.

It was around this time that I was given another salutary lesson in disability. I had naturally progressed from using one to two walking sticks, and was grateful for the extra balance provided and for the fact that many people gave me due consideration as a disabled person, but I had not physically realised exactly what this meant until I decided to post a letter. There were postboxes at each end of our street and so naturally, I selected the nearest and set out on foot. Subconsciously, I had always thought that I could walk to the end of the street. I now learned that I could not. I was shocked. Of course, I could easily get someone else to post the letters, but, like my first few weeks at work, it was a rite of passage. Or rather, of no passage. With the diagnosis, and arriving as an apprentice in the disability field, I had recognised my disability conceptually, rationally and politically, but now I felt it physically, and that translated into another aspect of the concept: I began to feel it emotionally.

The wheelchair, however, was soon put to use, in particular for shopping and looking. By this time, shops had become a pain on foot. I no longer even tried to enter my favourite Shrubbery Row bric-a-brac antique shop. Streatham High Street clothes shops always used to tempt me in to look for shirts or jeans. Now, if I went in at all, I grabbed the nearest rail to hold onto and chose something nearby. After I had come home with fairly inappropriate garments (I remember a pair of tartan jeans that looked good enough in the shop) a couple of times, out of sympathy for my wife and friends, I stopped browsing.

With the wheelchair, there was no problem. In fact, I developed a liking for shopping malls, which I had previously shunned as downmarket. Picture galleries became a joy once more. The Turner Galleries at the Tate were revisited with an increased relish for the huge, spacious rooms combined with the depth of light and colour on canvas. I feel an almost euphoric sense of calm there, only matched by visits to concerts, which often take me back to sublime days in the fifth row of the second violins in the school orchestra.

Oddly, something that I previously regarded as an imposition became a pleasure. With alacrity I volunteered for supermarket shopping. I would load the wheelchair into the car, park in the wheelchair users’ space at Sainsbury's, wheel to the entrance, attach a special trolley to myself and enjoy viewing the plethora of goods and shoppers on show. Of course, it was still a nuisance if they had moved the Loyd Grossman pasta sauces to a different aisle, but now I didn't mind going back. After all, I might find another delicacy on the way. Contrast that to my previous dismay on finding that I had to walk back the length of the store to find something. Smug or what?

I was reminded of one of the interviews I had done for London Disability News. I had gone to see one of the GLAD stalwarts, a woman who I was told was a veteran campaigner for accessible transport for disabled people. I was experienced enough by then not to concentrate too much on how or why she had become a wheelchair user. I asked her about her professional life, and found that she was a medic and in particular, a nutritionist. This intrigued me. How had she jumped from nutrition to transport? "It's simple really," she said. "I was working with disabled people, and their carers or the institutions in which they lived weren't getting them the food that they wanted or needed. Far better that they went to the shops and chose the food for themselves. Getting about would give them some independence too."

I could see what was coming. "So they needed transport to the get them there." This redoubtable woman had therefore campaigned in the LCC, GLC, and anywhere else she could for accessible transport. I had already reported on the campaign for LDN. It had now taken the form of direct action in which disabled people, in wheelchairs or not, positioned themselves in front of the inaccessible buses. Of course, it was not difficult in London traffic jams to do this. Sometimes they chained themselves to the vehicles to make the point. The direct action movement mushroomed from there. It took me back to my days as a student 'revolutionary'. Now, as a journalist within the disability movement, it gave me some satisfaction to be part of it.

The manually-operated wheelchair design, which hasn't changed much over the last century, is still very useful to me on flat surfaces, that is, or in places that my power-chair cannot penetrate because of steps or stairs. But my manually-powered attempt to reach the end of Harborough Road had been a real 'Mrs Armitage' moment. With Lewis I had been reading Quentin Blake’s stories about Mrs Armitage. In them she pragmatically keeps adding equipment to, say, a bicycle -- with the words “What this bicycle needs is: a seat for my dog" (when the dog tires of following); “a sail” (when she gets tired of pedalling) and so forth. Once getting around, even in the house, became a problem, I told myself “What someone in my situation needs, is something along the lines of the powerchair I used to see in use by my colleague, Brenda, as she defiantly sped to work through Brixton.”

As I describe elsewhere, the employment service fortuitously provided the answer: part payment for a ramp at the entrance to the house, and a power-chair that I could use for work, including getting to the post box, which, happily again, was right outside the French delicatessen. I'm not sure whether the pastries I purchased there were exactly what my Department of Employment assessor had in mind, but they certainly did my morale a power of good.

Soon after the new powerchair was delivered, intoxicated with its manoeuvrability, and bypassing my new ramp, I unintentionally drove it backwards down the flight of steps beside. Happily I picked myself up, dusted myself off, and started all over again.

Pleased with my new-found mobility, I invited a friend to go out with me to a local Indian restaurant. Not yet depending entirely on the powerchair to move around, I decided to leave it outside and walk in with my sticks. I was soon given a negative lesson in my generally trusting attitude towards the citizens of Streatham. My dinner companion glanced out of the window and saw somebody making off with the powerchair! Luckily, the thief was a prejudiced type, and clearly did not care to be seen using the powerchair himself. And so he was trying to drive it by walking alongside. Not an easy task. My friend Liz caught up with him and remonstrated. He claimed that he thought that it had been abandoned, and that it would be very useful for his little boy to roll around in.

Becoming a father

Conception had not been easy for us. I had fathered two children with my previous wife, but to be on the safe side took some fertility tests. Hurray! Disability seemed not to have harmed my fertility. But there was a role reversal . Somehow Tio kept having miscarriages. But hurray again! Those two tell-tale lines appeared on the pregnancy test, and the St Mary's fertility unit provided a lot of support .
The time came for our baby to be born. Came and went. Two weeks beyond B-day Tio was admitted to the St Thomas’ maternity unit and given a pill. I was sent away to await developments, keeping in touch by phone. Tio told me that to while away the time, she was pacing around. Actually, she was in labour: but given her history I suppose, she didn’t recognise the obvious. Eventually she fired the starting gun, and I drove over to the hospital, taking my wheelchair: as I was determined to be present at the birth, I couldn’t stand for what would certainly be a protracted process.

Six years after our baby Lewis was born, I watched a scary TV drama series called Bodies, in which an overweight medic sits in on Gyney Unit meetings stuffing herself the while with toffees and never says a word – just makes up the numbers. I recognised the duty midwife who had officiated at Lewis’s birth. At the time she gave us the impression that she had seen it all before – which was undoubtedly true – but the lack of eye contact and her concentration on sitting comfortably in a corner away from the labour-ward bed, filling in a form gave me no confidence or recognition that bringing a new life into the world meant anything more human than checking a bus into the Camberwell Green garage.

In the labour theatre, I positioned myself beside Tio, so that I could hold her hand, grip her thigh, and give encouragement. I was, incidentally, on the same level as the business end of the proceedings though I was not in direct view of that intimate place which had become the birth canal. Later she was to tell me that she wished I had been closer. (Sitting in the wheelchair, I was considerably lower than the raised working surface of the bed). I suppose she meant, I should've been in a position to give her a hug and kiss. And I should have been.

But I too had some lateral feelings about that labour theatre. Beside me, Tio's maternal flank became a strong sea wall, protecting her calm belly harbour, from which the baby would assuredly emerge. Both the baby and I could feel confident despite the rigours of labour. Lewis went aground more than once during an arduous journey along the canal, but emerged, crumpled and crying from the shock of at last accomplishing his first training passage. (The midwife had adroitly avoided having to do any labour herself by calling in a doctor as pilot when the boat got stuck). Mother and baby looked very happy. Me too. I did not feel at all disappointed by my role as a back seat spectator. It was their scene, after all.

I got back home from St Thomas’s at 3.30 am to find the dedicated parking bay outside my house occupied by some oaf who didn't recognise the right of disabled people to have a nightlife - or even have a baby come to that. I parked the car in the middle of the street and shouted with frustration at having to use my sticks to walk the100 yards from the nearest parking space to my house. Then I calculated that I could do it if I stopped halfway and sat on somebody's car. But what if it had one of those alarms that woke everybody up in the neighbourhood when it was jogged? It took a long time, sitting there crying. When I dried my eyes, I realised that most of the tears were a release from the emotional turmoil of the last few hours: a homage to my wife and new child. As if in recognition of my plight a nightshift worker ran from a house three doors from mine, jumped into his Renault and left a space.

Finding a job in journalism

As a new father, I began to put my lifestyle decision, to look for a job, in train. Blithely, I thought that, although I hadn't got a conventional journalistic career path, people might be interested in me simply because I did not have a traditional trajectory towards the job.

At that time in the UK, job adverts had started to include phrases like ‘working towards equal opportunities’. I found such expressions strange: either employers gave people an equal chance, or they did not. I started by applying for local authority jobs which I felt I could do – press officers and the like – which included in the advert things like ‘disabled people are under-represented in our staff, and are encouraged to apply’. I got no answer.

Next, I applied for jobs for which I was less well qualified, but which interested me more. I got some way with applying to the Economist Intelligence Unit as an East European editor (The application process was quite informal. I was aided by my study of East European politics as a postgraduate at Glasgow University) but besides a smattering of German, I didn’t speak the languages.

Tribune was advertising for subeditors. I applied and was invited to a shortlisting session. A group of fairly scruffy reporters were waiting for the test. Their air of resigned expertise immediately made me feel out of my depth.   We were taken to a room with three rows of tables, upon which sat three rows of typewriters. I was only used to word processors. I had never before used a typewriter. They might as well have asked me to use a quill to write. In fact these unwieldy great machines, green for some reason, squatting there looked toad-like and menacing. They were certainly intimidating. From observing others using such antiquated equipment, I reckoned however that I could make a stab at it. We were given a handful of press releases to turn into newspaper stories. I was very slow, but I don’t think I did too badly. I didn’t get the job of course.

Another interview was for the Xinhua News Agency, run by the Chinese government. I was of course unqualified for the job, training Chinese journalists in the ways of the British press. But once again my Glasgow studies must have helped me get an interview. The auditions were conducted at the headquarters of VSO (Voluntary Service Overseas). Their means of selection were to get the candidates together and eliminate them one by one through a series of tests – a bit like the Big Brother House. One exercise was to organize the others to sort different coloured ping pong balls into different baskets and transfer them in a certain way to somewhere else. Fun! Maybe someone at VSO was having a quietly ironic joke in the light of ‘ping pong diplomacy’, which was the way the press portrayed relations between China and the West at the time. Anyway the fun and games only delayed the ‘informal’ interview. I thought the diagnosis of M.S. might cause a problem, but no: the inevitable question was asked:

“Mr. Lewis, how would you approach questions on reporting, for instance, China’s invasion of Tibet”.

I told them, and the interview substantively ended there. It wasn’t long anyway before the Tien An Men Square debacle. Not even the most hard-boiled British hack would have taken the Xinhua line on that one. Or maybe they could have found someone.

My next tactic was to apply to disability organizations themselves. I got interviews! In each I had to confront my own prejudice. One was to edit a newsletter for LEPRA, the British Leprosy Relief Association. Of course the job would have suited me – and might have meant travel too. But I don’t think I managed to conceal my appallingly prejudiced distaste for the subject.


Finally, I applied to GLAD, the Greater London Association of Disabled People, which was looking for a disabled person to edit its newsletter, London Disability News (LDN).

As I approached the interview room, I heard someone talking with the unmistakably impaired speech of a disabled person. I was scared. “But of course”, I reasoned to myself, patronisingly forgetting my own wretched frame, “there will be the odd disabled person working here”.

The interview panel consisted of Frances Hasler, the Director of the organization, Michael Turner, the founder and existing editor of LDN whom I had heard talking, and who would become my manager and firm friend, and someone from the executive, the voluntary body that controlled the organization. Each interviewer was disabled. Michael explained to me later that he and the other disabled members of staff, responding to a national civil rights campaign within the disability movement, had just gone through a battle to transform GLAD from an organization for disabled people into an organization of disabled people – staffed by and run by them.

It seemed natural enough to me: recalling my 1960s political vocabulary – we weren’t in favour of the US running Vietnam for the Vietnamese were we? I don’t know whether it was because they assumed, as an editor of socialist magazines, that I would support civil rights, or because of my professional experience (well after I’d turned Interlink into a shareholding cooperative I did get badly paid for a few months), I got the job.

From the day I started, I made civil rights – the campaign for anti-discrimination legislation, and the right of disabled people to participate in society as equals – the main feature of LDN. It was well-placed to wage the campaign. The leading disability publication, Disability Now, was published by the charity for people with cerebral palsy, and was not edited by a disabled person. It did eventually change from its emphasis on fundraising and amazing feats (parachuting, mountain climbing etc) by disabled people to align itself more with the prevailing ‘rights’ culture of the disability movement, but LDN and some of the local publications such as the Manchester group’s, were the main printed form of protest.

Fortuitously, GLAD was based in Brixton quite near where I lived. I used to drive down Brixton Hill and park near the office. On the way down the hill, I often saw Brenda, our admirable Head of Equal Opportunities, speeding her wheelchair along the pavement towards work. Woe betides any pedestrian who impeded her progress. I suppose other footpath users had as much right as her to be there, but Brenda, a pugnacious fifty-year-old Lesbian woman with arthritis, made a mission statement of her life to redress the balance of years of discrimination.

The office was on the third floor of a building which had been given to disability groups by a generous bank.            

I walked into the open plan office and immediately felt embarrassed by being so fit. It was staffed by people with a selection of impairments that I have come to recognize in my time in the disability movement. But I found it strange. I entered as a member of a culture which is routinely prejudiced against disabled people and routinely discriminates against them. I was a disabled person who was prejudiced against disabled people; but I had already warmed to Michael, who took me round to meet the rest of the staff.

Lunchtime. I was asked if I wanted to join the sign language course, which happened every other lunchtime. I declined, but I regretted that later because it was taken by a capable-looking deaf Caribbean woman, whom I would have liked to get to know.

That afternoon, I found my way around the equipment that GLAD had got for me. I was relieved to find that I recognized the word- processor and publishing program that I would use. To this self -- trained reporter in this strange environment, it was the employment equivalent of a warm blanket. I also got to know the staff in my section as well as Michael. There was Liz, the Information Officer and Vilma, the Admin. Assistant. Liz happened not to be disabled, but she knew the ropes. Vilma was a Caribbean woman who had endless problems with her social life, particularly with her accommodation. Michael tirelessly listened to her catalogue of calamities and returned her to work. I learned a lot about management from him.

One manager, who was blind and had funky technology on his desktop that printed Braille, used to come up to my desk and talk, or sometimes he would just stand there and say nothing at all. He could never see the funny side of things. It must be difficult not to see people's body language. He did smile sometimes. You just had to laugh along with him.

In this manager's Equal Opportunities section was a man called Des. In contrast to his line manager, he made his presence felt a lot, with great roars of laughter. I found this difficult, because Des worked just behind my back. He was the Transport Officer, but found it very difficult to communicate. With much flailing of arms, he could hit a keyboard. Speech was even harder for him, so he would yell. Suddenly, as I was trying to fit a three-page article into four lines, there would be an explosion behind me.

“Why? Why can’t you make stashun access--ble?”

Not without difficulty, I got used to these interpolations.

In particular, Des would shout at his assistant, whose job it was to try to understand what he wanted. He got through loads of them by rudely barking at them. Life was very difficult for Des, and no less hard for his assistants. (He might have got one of them to help him wash, though.)

Des propelled himself around his office space pushing his wheelchair backwards with his toes. Other characters in the office were just as zany, and often just as distracting. Sometimes there would be a crash and clatter of limbs as a young woman fell to the ground, picked herself up and happily carried on careering through the office. She had taught herself to walk using the inductive method pioneered in Hungary. Perhaps a wheelchair might have been more effective, but clearly she was proud of her achievement. Besides, physios are always saying how important weight-bearing exercise is.

It was a happy office. At lunchtime, Liz got together with two of the Admin Assistants, and used to joke about the latest management silliness. You could get a sandwich for lunch at a nice little French patisserie a couple of hundred yards along Brixton Road. I used to walk there! The exclamation mark records that sixteen years ago, despite being diagnosed with MS, I could walk some distance without any trouble. The other members of staff were impressed!

One lunchtime we went on a civil rights rally. Jackie, a very attractive and fairly militant young manager, gave me a lift. We chatted as she drove. She said, “Do you consider yourself to be a disabled person?” This could have been an insulting question, given GLAD’s employment policy. Also, I imagine there had been some talk about me not being visibly disabled. But I thought I knew where the question was leading. I had talked to Michael about the social, rather than medical definition of disability: you are disabled by society discriminating against you. As a socialist, this seems exactly the accurate way to see it. I thought for a bit, then said,

“Yes. Nobody, besides a disability group, would give me a job once they saw I had MS. They disabled me didn’t they?”

I think I passed the test.

Once a week, the trainees used to prepare lunch in the building's Canteen. Out of a sense of loyalty, and because I liked their apple crumble desert, I used to go. Strangely enough, it was here that I had one of my first experiences of prejudice. By this time, I was walking quite unsteadily. I was carrying a tray back to the counter when one of the trainees remarked, “He shouldn't have had too much to drink this morning!” I was not visibly disabled, and he did have learning difficulties, but the staff told him off anyway. It was soon after this that I began using a stick.

Before that, despite not needing a stick and of course still imagining that I was as strong as the rugby player I once was, I began to feel at sixes and sevens - and a little bit off-balance - with the pushy London travellers and shoppers. Rival pedestrians were forever nudging past me on Underground platforms or Tube trains. But the stick served as a badge; people gave me an inch or two more room, and sometimes even gave up a seat for me. It was mostly middle-aged women who did that.

Feedback from LDN readers was very rare. Sometimes I wondered if anyone read it, but once I spotted a bus passenger apparently immersed in it. At last! Gratification! She was wearing a yellow scarf with blue spots. I was tempted to give her a kiss.

My interview page provided a break from the latest horror story about the appalling treatment of disabled people in the capital. The stories of my fellow disabled activists are truly inspirational. Goia, a life drawing artist whose blindness to all but lightness and shade gave her the opening to study the way light fell on her subjects; Alan Holdsworth, one of the many actors and performers in the movement, whose protest songs could not contain his anger: he founded a direct action movement which led him to chain himself to the bumpers of inaccessible buses or to Downing Street railings.

One interview took me to the Aylesbury Estate, home of the Southwark Disablement Association (SDA). Row upon row of dispiriting concrete ‘maisonettes’ brought home the unity of, on the one hand my post-sixties leftism, which led me to brave the monstrous Hyde Park flats in Sheffield, and compelled me across the threshold of some stinking repulsive homes into the bargain, and on the other hand, my current situation as a disabled person. The leader of the SDA cheerfully took it for granted that the members of the Association were going to be living in poverty, scrapping for the benefits which would allow them to keep as clean and to be as well entertained and well fed as the other residents of that mean, benighted estate.

Take that!

There were some very positive moments at London Disability News. A man with MS, John Jevvons, called me and asked me to report on the way he was being treated by his local authority in South London. He got around his flat in Walworth using a walker that looked very like a supermarket trolley. When he answered his door, he was in the process of loading the trolley up with bags of garbage. We talked as he did this: "They keep sending so-called helpers who don't know me, and they don't know my needs. They come from different agencies and they're different ones every time." His particular dispute this time was that they wouldn't take out the rubbish from his flat. They said it wasn't part of their job. Well, I could see that he could open the door of his flat and push the rubbish out, but wasn't sure whether he would be able to get it in the bin. But the point as I saw it was that anything like that would tire him out. Social Services should have understood that.

When he'd finished loading the trolley he pushed it to the lift, and then along Walworth Road until we got to the Town Hall. There was a ramp to the entrance, and he then tipped all rubbish out of trolley in front of the vestibule. I took a photograph, and then we went our separate ways. He to his lonely flat and I to my employer (where as a disabled person, I felt I could do a useful job) to write up a report.

Stretching myself too far

Tio and I used to enjoy accompanying my mother on holidays to Southwold – a time-warped resort on the Suffolk coast. It is distinguished by an absence of noisy slot-machine arcades and the presence of plenty of antique shops. We found a cottage right on the front. Mother used to spend hours sitting on the veranda greeting passers-by. While I could, I went cycling with Tio alongside the harbour and over the river to Walberswick. At one time the village had attracted a colony of artists, including Stanley Spencer and Rennie Macintosh. The light and the rattle of the waves on shingle still appeal to watercolourists. I kept up my sketching when I went there.

It was early July. One day we had seen some swimmers wading in from the beach between the breakwaters. So I decided to go for it: “Coming in, Tio?” I ventured. “You must be joking,” she shivered at the stubborn English habit of bathing in the North Sea after its spring cooling in Arctic currents. Although she is a strong swimmer, she had no intention of even dipping a toe into a ‘freezing cold’ ocean, “specially one with no lifeguards”. So, with Tio standing on shore ready with a towel, hoping, I imagine, she wouldn’t have to come to the rescue, I picked my way over the shingles and plunged in. The water felt freezing, but then I had known it would be cold.

As I struck out for the end of the breakwater, I felt invigorated. The water was a brownish-grey colour, but I reminded myself of my mother-in-law’s Queenslander remedy for everything: sea water. From one breakwater to the next and back. That would be enough. I was beginning to tire when I reached the end of the first lap, “But then”; I thought as I began the return leg, “I’m nearly there”. And so I resumed my redoubtable breaststroke. The finishing point now seemed a long way away. I glanced at Tio’s anxious posture and welcoming towel, and veered off course towards her. Each stroke was becoming more difficult to make. I thought of waving at her, but a combination of reluctance to sound the alarm and calculation that any attempt to stop and wave would have me floundering and foundering decided me to carry on dragging myself through the water, and finally crawl onto the beach and into an enveloping towel. It was a short stumble back to the house: Tio ran a hot bath, and as the towel dropped from my shoulders said “You’ve turned blue. I told you the water would freeze your bollocks off!” It took me an hour in that bath to thaw out and discern that all my body parts were present and correct.

South London Swimming

Streatham, which is where I swam at that time, had a superb pool – or at least you could see it had once been superb, with a spectators’ balcony and a stage at one end: imagine swimming to an orchestral performance of Die Moldau! Well, I could imagine. The bath’s management had let the building decline. Paint peeled from its Art Deco features and dirt hugged corners. And even when Lambeth did allot some cash to refurbishing changing rooms, we disabled people were left out. I had to change in a meeting room. Plenty of space actually, and a window let in fresh air and snatches of conversation from passers-by. This room was soon privatised into a fitness club, however and I was shuffled into the ‘first aid’ room to change. This grubby room doubled as a store for cleaning paraphernalia – equipment that was used sparingly if ever to provide a suitable environment for casualties.

The staff were helpful though: as sometimes is the case, alarmingly helpful. At that time I was using two sticks to get around. I felt self-conscious in my swimming trunks on the short haul from the First Aid room through the lobby, past a queue of punters just in from the street. From the entrance hall you could reach the pool through swing doors, which I was taking my time to open when strong lifeguard arms appeared round either side of me, and gave the doors a push, and whoosh I fell forward. Luckily the lifeguard picked me up, but I was cross.

“What did you think you were doing?”

“I was just trying to help!”, he said.

“Really? If you see someone drowning, do you help them drown?"

Some people, when they see a disabled person, just panic. It puts them under an obligation: they do the first thing that comes into their heads, without thought.

A couple of hours on Thursday evenings were scheduled for a session for disabled people, including, naturally, people with learning difficulties. I went along. Room was found for us to change together. My instincts were to recoil from the palaver: piles of unlovely clothes, smelly bodies, unlovely people, and trainers all over the place. But then I had my own difficulties finding a suitable corner to balance my sticks and getting myself undressed, and something came to me that I was by then learning in the disabled peoples’ civil rights movement. If I was going to love myself, I might just as well love these people.

I heard about the favourite girlfriends:

“Go on, you want to take her out; go on, you love her. Go on, ask her!"

The object of this cajolery looked down very shyly.

“Go on, go on, go on”, he was urged.

And I heard about the cafes, escapades and activities of the day-centre club members. There was a hoist to plunge us into the water – no shilly-shallying at the waters’ edge.

After our child Lewis was born, we favoured the Latchmere pool in Battersea, crowded on a Sunday morning with middle-class dads and mums giving their partners a break, or a chance to cook Sunday lunch. It was one of those “beach” pools which I could wade into, holding on to the edge until it was deep enough to swim, and there was a rail I could use to help myself stand up when I got out. A hooter sounded every half hour before a massive mixer churned the water up into waves. Tricia sat with the baby in the shallows and let the water wash over them. Supported by the deeper water, I enjoyed using what purchase I had left in my toes and ankles to leap with the waves.

It occurs to me that swimming is a way that disabled people who can’t move very well can have a sexual relationship: there should be private pools where we can savour the support and ease of movement provided by buoyancy in the water. At least there, we are unencumbered by spasmodic limbs, walking aids or wheelchairs.

Trouble with a Parking Attendant

I had carefully parked my car, a smallish blue People Carrier, as near as I could to the framing shop on a Brixton sidestreet. Painted next to the pavement was a worn single yellow line. "No matter" I thought, "my Orange Badge entitles me to leave the car here: I won't be long." With that, I used my stick to walk round to the passenger door and pull my life drawing from the seat, nudging the car door closed as I started round the corner. "Well this is a lovely piece of work if you don't mind my saying so." Anthea, the frame shop assistant said. "Well, she would say that wouldn't she?", I thought , privately proud of my work.

I had joined a group of local artists who had carried on painting despite having our teacher’s funding cut by the Local Authority, and hired our own models. Initially, people answering our advertisements had been too thin and skimpy for the group's tastes, and so I agreed to ask my wife, who was well proportioned, well rounded "not looking as if she is starving like some of the professional models" I told the group as I thought fondly of my young wife Tio. She had been quite uninhibited and generous with the positions the group had asked her to adopt, I remembered. After discussing suitable mounts and frames, agreeing a price and a completion date, I returned to my car. I was astonished to find a parking attendant fixing a notice to its screen.

"Hey!" I cried "can't you see my orange badge?". "You're parking like a moron" replied the attendant. "I'll show you the rules for Orange Badge users", I offered as the attendant started moving on to his next catch. "Fuck off then!", I said.

After indignantly relating the incident to my family, I returned to the spot the next Sunday. Not to my surprise, I found an intermittently worn yellow line. Even more indistinct were two lines, a van length apart, and a broken sign above the pavement saying Loading ... and some rusty figures which might at one time have indicated the hours which loading was permitted. I took photographs of the position at which I had been parked when the alleged offence had been perpetrated, and then went home to await a parking fine notice. I was determined not to pay, and to explain to the Legal System the illegality of the fine and the rudeness of the parking official. Confident of the justice of my case, my own abuse of the wretched man had been quickly forgotten.

Several months later a Court Summons duly arrived. As a journalist in the disability field whose employers were quite used to the kind of incident that I had described, I took the day off work, found an appropriate parking bay and arrived in good time at the appointed South London Court. Somehow I felt at home with the assorted men and women, some of whom were hurriedly consulting their lawyers and waiting for their names to be called. After an hour or two engrossed in my Frank Bascombe novel, someone disappointingly not clothed in wig and robe, called out "Nicholas Lewis". I stood up, to be told by someone who must have been a clerk that the case had had to be postponed because the chief witness, the parking attendant was unable to attend. I went home disappointed at not having had my day in court.

Weeks passed and I was summoned again. Same parking space, same waiting area, similar groups of people in conference. I had finished my novel though and replaced it, appropriately enough with Jonathan Franzen's The Corrections. It was not long before it was indicated that somebody with my name (it was hard to believe that it was me) should present himself to Court Number One. Clutching my file containing photos and a written speech I clambered and clattered with my stick along a wooden bench and surveyed the magistrate and officials. "Mr Lewis". I stood up again. "You have twice appeared here in a case brought by the Lambeth Borough Council. Their witness, a Parking Attendant has again failed to appear. I can see you, in contrast, have gone to some trouble to get here. Case dismissed!"

So I had won! I was pleased I could tell my friends and even have a party on the strength of it. But I was denied my Rumpole day in court. I should have known it when that pathetic parking officer ran away from me on the day of the so-called offence.

The Chase

While I could still use sticks to walk a few paces, I used to nip up to the chemists on the High Street and park in a dedicated bay while I was in the shop. When I got there one time, there was an obvious imposter in the bay. I circled around a couple of times, building up a head of steam, and then backed into the bay as he was leaving.

Injudiciously, I wound down my window and told him what I thought of hiim. He was still there, double parked in his darkened-windowed BMW, when I left the chemist. I cursed myself for aggravating this weasely, nasty piece of work, but hobbled to my car nevertheless and started off, trying to ignore him. He snaked after me! He kept very close. I knew the streets round the chemist very well, though. So I took a left when I could and weaved through them. He stayed right behind. Next, I took him fast over some speed-bumps, reckoning that he would value the chassis of his BMW more than I would be bothered about my car.

I glanced in the mirror. He was still there, clearly enjoying himself. I noted his number and thought of making an emergency stop, and claiming against him on the insurance when he crashed into me. But then I noticed a street with a no-entry sign on my right. The next time round our circuit, I abruptly turned right the wrong way up the one-way street.

I waited for a while a little way up the street and then turned back. The enemy had disappeared. I half expected him to be blocking my parking bay when I got home but it was clear, and I congratulated myself on a more exciting and unusual visit to the shops, over a steadying cup of tea.

Underground incident

My wife Tio who worked at the time for the International Red Cross, decided to take a spell working at their Geneva HQ. I devised a plan to consolidate my three days per week at GLAD into three weeks in Brixton and one week in Geneva so that I could join her. I had always liked the idea of living abroad, and it worked – for me that is. I felt my role was to keep Tricia company and busy myself getting things for her flat. I enjoyed taking washing to a Swiss launderette, but found that my confidence, dented by disability, made the relatively simple process quite hard. Still, I was bold enough to make use of my smattering of holiday French, and made one or two friends.

Of course, disability threw up other obstacles. I stood at the top of the long, deep escalator at Hyde Park Corner Tube station and wept. The escalator was not working. A station worker had hastily scrawled an ‘OUT OF ORDER’ notice and strung it limply from a post. It was the second of my week’s Geneva visits. I had packed a suitcase with not only my things, but some essentials from Tricia’s flat and from London’s shops -- a coffee pot; Bob Dylan CDs (she had grown up listening to her sisters' 60s music). I had targeted Hyde Park Corner because I could get almost directly from a cab via an escalator onto the platform for Heathrow, and then a safe transfer to a Departures luggage trolley. I was fairly proud of this plan, being used to leaving things mainly to fate.

That is why I was standing there dismayed, watching how everyone else was managing. And then: salvation! A middle-aged woman approached me. “Need some help?” she asked politely. How did she know? I hadn’t asked, nor was I at that time very obviously disabled. She must have sensed my predicament from my body language. I told her I was expecting the escalator to be working . She did not hesitate. She took hold of my baggage, trundled it down the stairs, and then waited while I plodded down. As much as I feel frustrated that society – capitalism, the market, and the social structures that belong to it - are deployed against those of us who are disabled, I feel a great love for those whose humanity gets beyond its narrow utilitarian margins.


Well into my job publishing a newsletter for the Greater London Association of Disabled People, a volunteer, Lottie came into the office. It turned out that, like me she had MS; she seemed to share my level of mobility. She was a pretty young Afro-Caribbean woman – always ready with a joke about our situation: “What was I doing the last time ? Of course it wasn’t the very last time. Here I am again!” She wanted to get involved with journalism, and helped on the newsletter. We were working on a protoacted story brought to us by a mother who could not get her depressed daughter’s doctor to prescribe medication for the girl, Emma. We agreed that she should try to contact Emma. "I know the kind of thing" Lottie said, "maybe this girl wants to make her own decisions for herself. This is an eighteen-year-old after all. Sounds like she's being patronised." So Lottie went as an official GLAD volunteer to see Emma.

Lottie missed a week every now and then. She told me she was periodically admitted to hospital for steroid treatment to stem relapses. After one long absence, I asked our volunteer programme manager where she was. “Hadn’t you heard? I’m sorry”, she said. “She died of a heart attack”.

I couldn’t help wondering whether her heart just could not withstand the shocks of coming on and off high doses of steroids. The funeral was a few days later, in Hackney. Friends and family had been delivered a shock too. A vibrant, funny young woman had suddenly left them. “But”, I reflected, “at least she made us happier”. Some time afterwards I heard that Emma had left home. Maybe that was another of Lottie's legacies.


We booked late for our annual holiday in Southwold, in September, and so we missed our usual house above the beach. The new one wasn’t bad, but it brought the rain and broke the spell that the town seemed to cast over our July breaks. Mother went home early, possibly because we had our new baby Lewis and couldn’t give her as much attention as usual. It was raining as we left; one of my sticks slipped on the wet concrete drive as we were packing our car; I fell, broke my leg, and almost sunk my teeth into the car tyre to ease the excruciating pain. Someone called the doctor and an ambulance. Both were very welcome, and necessary. The doctor gave me a shot of analgesic;   the ambulance paramedics scooped me up and kept the pain-killers going. Ipswich Hospital orthopedics immediately operated, fixing my fractured femur with a steel pin stretching from hip to knee. Meanwhile they transfused me with several leg-fuls of blood. A helpful nurse told me later that in wartime many soldiers with broken femurs used to die from loss of blood.

I got acquainted with the other inhabitants of the ward. The first question was: why were they there? One elderly man had left his alarm pendant in the bathroom. He fell over and fractured his arm when he was getting out of his armchair to go and get it before he made a cup of tea. It took him hours to inch over to the other side of the room, where the alarm system was based, and then reach up from the floor and press the button. By the time help came, he said, he was really desperate for that cup of tea!

One man had fallen off a ladder while trying to replace a tile on his roof and one young man had been playing an informal game of football in the lunch break at work and had kicked a curb instead of the ball. Ouch! The composition of the ward kept changing in about even numbers between genial local people who have come to grief, and very ill elderly men confused by tubes inserted into their wrists to provide them with life-giving nourishment or catheters to drain away the liquid byproducts. It is a real problem for a nurse to explain to a bewildered old man exactly why he has something protruding from his penis, and tell him off for clutching at it.

While I was hospitalized, I was encouraged to drink as much as possible; they fitted me with a catheter to drain away the contents of my bladder. This seemed to me an admirable situation. MS makes you lose control of the muscles regulating the bladder and so you are forever wanting to have a piss, sometimes very urgently. Doctors had prescribed me tablets to solve the problem, but they were never very effective. And so it was a relief to be comfortable, at least in this department, while I was in hospital.

On discharge, it was wonderful to be back home with my little family. My sister Kate and my friend Liz, who had helped Tricia come to see me more or less every day, were also there. I was overwhelmed to have them all around me. Convalescing was nice too. Until that is, I was knocked over again by my bladder. I felt as if it had been taken over by one of those mediaeval fools, inflated, and swung around to belt me in the belly. “Aha!”, said the clown, “You thought you’d got that sorted. That was just a trick. Let’s get real.”   Try as I could, I could not wee. The pain became excruciating, and so there was nothing for it but to call the ambulance to take me to Casualty, where to my great relief they inserted a catheter once more.

Unfortunately, the doctors decided to keep me in King's College Hospital, in one of those massive old general wards the size of a football pitch, where the nurses, at full stretch in those Thatcherite days, busily strode up and down with their eyes glazed and firmly fixed on the horizon, determined not to meet a patient’s eye and be coaxed away from the set curriculum. The regime in that general medical ward was primitive. Meals, washes, bottles, bedpans, commodes and a medicine trolley once or twice a day. I was surprised that this kind of place still existed. Very soon they shifted me; just, I think, in case I made a fuss in the outside world. The new ward was pleasant enough, and I soon got to know the patients in my bay. Opposite me was a terminally ill cancer patient, John, whom I liked a lot. He and his wife were concerned that in many wards where he had been treated, weak and elderly patients tended to be neglected. At mealtimes, their food was often put down out of their reach and then carted away if they hadn't eaten it. One day John fell while he was getting out of bed to use his wheelchair. I couldn't move, and there were no nurses about, so I pressed my alarm button.

After several minutes, during which John, clearly distressed, sank further onto the floor, a nurse arrived. She hauled him into a sitting position, threw a blanket over his shoulders and hurried off, apologizing that they were in their "clocking on" meeting. This is command economy "Stalinist" behaviour, in which people do what is expected of them by some bureaucracy rather than treating people with humanity. I have met it and, I am ashamed to say, done it myself. John survived. For a time.

Sue, the Continence Nurse

Another nurse breezed in, this time to see me. She announced herself as Sue, the Continence Nurse. "I have come to teach you how to use a catheter,” she said. I had been briefed by a doctor the day before that somebody would come to talk to me about my urinary problems, but this plump, well endowed woman surprised me. In a reassuringly capable way, she asked me to pull my pyjamas down below my waist and proffer my penis to her. She donned rubber gloves, produced a package about twice the length of a classroom ruler, and ripped the paper cover off the catheter. Then she squeezed some kind of lubricating jell over it and inserted it into the opening at the end of my penis. I had always thought this hole to be rather small, but having now become better acquainted with it, I realise that it's quite big enough to accommodate a 14 mm plastic tube. I helped her to thread it, right down through my penis and urethra and then, with a slight push, through a valve into my bladder. Magic! Just as if I was having a piss, the urine came peeing out into a jug. The nurse left me some catheters to try out, which I did the next time I wanted a pee. My immediate thought was what a wonderful woman Sue was. She probably has a following all over South London.

Since then, intermittent self-catheterization (ISC) has been the way I have a piss. Initially, I interspersed it with the traditional method, but it was not long before urgency, combined with lack of mobility dictated exclusive use of the catheter. I have given up nostalgia for the ability to have a pee whenever you need one for the certainty of not pissing myself or alternatively living in the toilet. Courtesy of the NHS, we ISCers simply siphon our bladders three or four times a day. I am technically incontinent of course, but I no longer feel it.

Intermittent Self Catheterisation

I had followed my usual routine. Rosie, my personal assistant, hauled off the duvet and replaced it with a towel (this replacement was to "preserve your modesty ducky" despite my assurance that she had most likely seen it all before) and then shunted up my boxer shorts and trousers. Fully dressed, she expertly dropped me from my ceiling hoist into my wheelchair ready for a shave, wash and breakfast. Then, without much more ado, I was on my way around the corner to the bus stop. Waiting there, I had an inkling -- you know what it's like, just the feeling at the back of your mind -- that I might need a piss: the inkling was relegated further to the back of the mind once the Oxford bus arrived and I was making the familiar journey to the railway station. At last the day had arrived to meet Liz for a friendly lunch at a favourite restaurant besides the Thames. At the station, I reported to the reception desk. "Mr. Lewis is it? Got your ticket?" Glancing at the clock, the receptionist advised me: "you've got 20 minutes". Still keeping to my routine, I wheeled over to the coffee stall and bought a hot chocolate (carton with a plastic lid, hole in edge of lid to drink out of). The porter Johnny very kindly took charge of the drink while I drove up the ramp to my position in the London train carriage. Just like a commuter, I have got to know Johnny quite well over the years I've made trips to exhibitions, theatre or cricket. He is a reassuring presence on the platform.

Hills, trees and luminous stretches of the River Thames sped by. I enjoyed my hot drink watched by the anxious couple on the other side of the compartment table "You need a hand? Anything we can do?" "No, I'm fine thanks". But that inkling had returned. Not much they could have done about that. "Anyway", I thought, "I've got plenty of time once I arrive at Paddington to pay my usual visit to the toilet for disabled people and use my catheter". I keep one folded in my shoulder bag for just this purpose. Thinking about it, though, increased the urgency. Never mind: I would not need to go again until I got back home that evening. Comforted by the relative proximity of relief, I carefully wound my way to platform one through the throng of lost passengers hoping for an answer from the departure boards; into the reception area where somebody kindly opened the door of the fairly spacious toilet. I was there! Just needed to get the catheter from my bag (done), extract it from its paper covering (done), throw away waste (done), tilt my wheelchair (done), wash my hands (done), uncover the plastic tube from its casing (done), get my penis ready for the insertion of the catheter tube into the urethra -- Problem: "Christ I've waited too long"; remembering an urgent occasion at home once before, when I'd had to get Rosie to hoist me onto the bed into a relaxed position to use the catheter, my mood lowered dangerously. "What if I can't do it? Stuff my pants with toilet paper and carry on? Do the same, turn around, get reception to phone the restaurant and make my apologies? Get the train home? Find out if there is a nurse on the station staff who could help me with the catheter?" I looked at my watch. With relief, I remembered that I had left well over an hour and a half to get to the restaurant. An edge of confidence returned. I could see the little opening in the penis glans now. Got the catheter ready -- but where had that glans gone? Bloody thing had retracted. Try again. Think about something completely different. How about that time we were out for a walk and I had a wee against an oak tree? ... Get the penis ready. Yes! It is. In all its glory! Now slowly does it -- we don't want it to run away again. The catheter is in. Relief is at hand. There's still time. To my added relief the reception staff had patiently ignored me for what seemed like hours. Paddington now has a line of black arrows to follow all the way to the taxi rank. Obediently I followed at a snail's pace, occasionally pausing for oblivious travellers standing on my arrows. Now I had time to wait to be noticed. In fact when I got to the lifts for the rank, fellow pedestrians did help to clear the way.

Despite the worrying London traffic hold-ups, my cabbie got me to the Thameside Bistro on time. Phew! As I entered the vestibule I was met by the head waitress with a message from Liz to say that she had been delayed! 20 minutes later, looking lovely she arrived. She had been about to leave her flat, she said, when the fire alarm went off. "I had noticed some bluebottles buzzing around and tried to shut them in the kitchen, but they got into the living room and set on fire alarm off. I swatted one, then had to open a window and run around trying to chase the other two out." We found a riverside table. And relaxed.

Good morning

Richard burst through the door from the changing area into the cafe. He was dressed in long swimming shorts with a sunflower motif, and nothing else. This was no surprise, given that we were at the pool for the weekly session of the Oxford Water Rats, and we were waiting for a changing room to get free.. In preparation for jumping into the pool, Richard, a young man with learning disabilities showered us all with a display of joy. Keen to share the experience, he ran to each of us with a heartfelt "Good Morning". Instantly I felt enthused, and my support worker, already dressed in her swimming costume, beamed.

His mother gave him a kiss and a pat on the bum and dispensed him back to the changing room. Once I emerged, changed, into the pool area, Richard was still warming up: running around barefoot, clearly set on saying "Good Morning" to all the swimmers and helpers. We watched, fascinated, wondering when the preliminaries would finish, and the real swimming action begin. One of the life guards, also watching, intercepted him and playfully pretended to push Richard into the shallow end.

“Hey” someone bawled

Momentarily, the pool froze its stretched-necked swimmers into ice; conversation around it fell silent . One of the ‘support’ workers, a bearded man with a glint in his eye, for all the world like those football fathers who stamp and jump and hurl abuse at the referee from the touchline when they think their son has been wronged, ran up to the lifeguard and shouted "Get your hands off that boy!". Richard jumped between the angry man and the lifeguard and turning towards the former, who had previously escaped his greetings, smiled and said "Good Morning!"

Jonathan Luyden Montgomery

Mind you, he's a decent sort. Ex-Merchant Navy and NUM shop steward -- house work learned at sea and many a behind-the-scenes tale of miners’ struggles. I liked the stories. They coincided with my experience years ago, vainly trying to build a revolutionary party in South Yorkshire and selling Trotskyist papers at the pit-head. Somehow, after his experience of physical work as a young man, he had built a career in Social Care: Parkinsons, Alzheimer's, Stroke, Bedsores -- he'd seen the lot. An expert on cheese, you could ask his opinion on what to serve after a rabbit stew or whatever. But he was like a gnarled, mature top of the range Stilton himself -- he knew what I wanted before I asked him: no idea that I might like a creamy Brie or a piece of cheddar, so to speak, instead of my usual fare. Getting hoisted in and out of bed or onto the shower chair I might ask him to change the position of a strap. "Oh that’s this week's complaint is it?" he complained.

As somebody with secondary progressive MS, I have progressed (deteriorated is my term) from embarrassingly striding unaided into work as the representative disabled person, to sticks, wheelchair and hoists into and out of bed and bathroom (and swimming pool). Fairly standard in other words. Since I have needed support in the bedroom I have had to find care agencies to provide for me. Some are better than others, but they all seem to pay their workers at or just above the minimum wage and expect them to perform, exploiting their vocation to care for disabled and elderly people. Sometimes the workers actually lose money because they are paid little or no petrol allowance to get to a particular client. J L Montgomery’s employers, the Homely Care Agency, seemed at first to be humanitarian. But they were overtaken by the financial crisis and forced by government cuts to operate with a tiny staff. Some of their female clients objected to being looked after by a man. So Yours Truly ended up with JL Montgomery.

I could have coped with his clattering and patronising manner, but not every day morning and night. I felt trapped. There were other agencies of course, but in those days they were all under staffed. It was JL who suggested the solution when I reflected on a news item: "Can't stand these zero hours contracts, JL. There should be a union for Care Agency workers." The old ex-trade unionist shook his head "Some of the workers in this game like the flexibility," he said. "But I agree, the employers are taking a liberty. We need a new government to change the rules. The only alternative for people like you is direct employment of support workers."

So that is how I ended up paying two very friendly young self-employed women to help me. "Could you pass me that cup of coffee please Rosie?"

Could you just ...?

Lambert had been looking forward to this -- with trepidation. He had caught himself feeling aroused at the thought. How would she react? Already, while she was giving him a shower, she must have noticed him getting physically aroused whenever she got near with the water jet. "Now's the time," he thought. "I'm hot and sweaty. Time for a shower." Even the words, asking Felicity to get the sling ready to hoist him off the bed and onto the shower chair were exciting. Felicity, herself dressed in a light bronze-coloured top and leggings, delicately covered him with a towel and pushed the expectant Lambert into the wet room.

It had been on his mind. The doctor at the Disability Clinic had been helpful (must happen a lot once people disclose that they are having to sleep separately from partners): "One of the doctors here, you know, is very expert and happy to talk about sexual problems". Lambert said he thought that he could manage, and then thought he could metaphorically kick himself for losing the opportunity. Playing with himself was a bit lonesome. But then Felicity (‘Flick’}, his personal assistant had come into his life. She was a 40-ish aged woman who had "seen it all". She had carrot-coloured hair, and was not conventionally beautiful, but she reminded him of one of those faded Toulouse-Lautrec posters that had so attracted him in his student days.

"I'll just cover up your crown jewels with a flannel while the water warms up" Flick said as she deftly whipped away the towel. Lambert vainly tried to distract her with his hands while the flannel took off like a Harrier jump-jet, or more like a magic carpet. Ignoring that, Flick squirted shower gel into Lambert's hair and gave it a thorough massage, following up with his upper body and limbs. "I'll leave the rest for you" she said. There was nothing for it -- now was the time. "I suppose, in your job you've seen this kind of thing before" Lambert said as he soaped his fully revealed, inflated and clenched genitalia. "Well" Flick said with a frown, "I am sure you don't imagine that I have gone through life, boyfriends and husbands and my own children without seeing something similar ... but I think you measure up". Lambert was relieved: he felt his face turning from bright red to a normal pinkish hue. "Would you mind if I played with myself, Flick? Could you just stay -- and watch if you like. I would like that".

She stayed! Lambert couldn't tell what she was thinking, but he liked to imagine that she was at least marginally interested

It has escaped my mind

Some time ago I made an Advance Directive; what some people call a Living Will. It read "If I am unable to recognise my family, then I no longer wish to live." The next phrase seems to me now to be on the grim side. "I wish to be transported to the Swiss Dignitas Clinic where voluntarily and legally I can be assisted to kill myself." In other words, to commit suicide. What seems tortuous about the process, given that by that time I would, according to the directive, be extremely confused, is the negotiation of travel by ship, plane, or even car to an alien clinic, where I would find entirely strange people telling me what to do. But this is what the exigiencies of the UK law apparently require.

For now I will leave this strange method of ending one's life. What perplexes me is the question of the point at which I say to my friends and family something like:

"Okay, I've had enough of this! Now is the time to pack my bags for Switzerland/take those tablets you will find in the top drawer (you can open them up and dissolve the contents in water if you like)/escort me to the top of the multi-storey car park and push me off/ etc etc. Goodbye: tell the rest of my family and tell my friends that I love them and that I hope I have enhanced their lives a tiny bit, goodbye. I don't want anybody to mourn over my dead body. That's gruesome. If they would like to have a party to celebrate my life, I have left instructions in the manner of Desert Island discs for some music (including of course the Rolling Stones and Bob Dylan) to play at the event. Just look at the End of Life folder on my computer. ”

Before I go - a cup of tea, And possibly a luxury of some kind: how about a Bath bun? "Dare I eat a peach?". Perhaps, before I jump, I'll have time for some memories: maybe nice memories; playing tennis with my dad on our court with those encroaching weeds ; helping my mother to pick juicy raspberries; walking past my breast-revealing girlfriend’s open door -- did she mean to leave it open? I must have imagined the possibility a thousand times; together with my friends producing Gestetner leaflets for an early 1960s student demonstration; still interested in breasts, falling in love with a fellow radical but sophisticated student; playing hide and seek with our children at Roche Abbey; holidays with the family at Brittany campsites; getting to know miners at Rossington colliery; finding mature girlfriends; sketching – looking – discovering – learning; the beauty of the city of Glasgow; then spending years and years with an even more mature girlfriend, the lovely young Australian woman, Tio, having a boy with her; I am still devoted to them both ... those are just some of the glances which might come to mind.

To return to my Living Will. I think you might by now have worked out the problem that I face. My brain is gradually getting addled. I can't predict at what point I will become unable to recognise my nearest and dearest, and so it will be impossible to tell them that this is the point at which I would like to turn out the lights permanently.

Of course I could delegate the decision to Tio. But how unfair it would be to give her the totally unfamiliar task of making the decision whether to end someone's life. I think we both have had to ask the vet to "put to sleep" a cat or a dog whose life had become unbearable for either itself or for its owner. But ending a human life, let alone that of a loved one! I suppose it will be an easier decision if other people are involved in it. I imagine the task of actually carrying out the act of killing could be a relief, but would nevertheless be very sad if not agonising. I suppose it would be possible to involve my doctor, who is aware of the Advance Directive and has seen the deterioration of my condition over the years. But I think it would be illegal for him to kill someone. He would probably not want to do it.

Is there some other way of arranging my death? Actually, I've got that box of Xxxxxxxxxx. The contents could be dissolved in a special mug of water, of which I could train myself to recognise the significance -- a special mug for the big sleep. Like most things in life, and death I suppose, we can't be sure of the outcome. But I think I might be on the right track.

I have thought several times of sacrificing myself in a blaze of glory to some worthy cause, for instance, the assassination of a dictator such as Assad of Syria. Despite the undoubted sacrifices and discomforts undergone by the International Brigade of fighters against Gen Franco who had seized power in Spain in 1936, I don't think that such a Brigade will accept me, a wheelchair user, as a member. The same goes for any guerilla band that I might select. I definitely don't want to throw myself on the railway track, from a high building, or in front of a bus. What a mess. Not a suitable memory for my friends and relations.

One problem: I think I might be afraid of dying! Each day I watch the dawn, as it shows me the beauty of even the little things like the rubbish bins lined up outside my window, or the buds and berries, branches and leaves as they form through the seasons. I like to remember meeting Tio and our son, Lewis. But anew each day? That is what dementia wouldl be like. A sense of wonder. But I think I need to be able to make sense of my world, and I have got the feeling that life would be meaningless without the ability to do that. I’m scared of a fever-strewn life of confusion

I think I know about that kind of confusion. At one point when living in south London, and we had a visiting babysitter, I persuaded Tio that we should do something different: "Let's go out for lunch. We could go to that restaurant on the South Bank that we liked the look of". So we got in the car. "You know the way from here, Nick, don't you?" I assured Tio I did. Then I set us off in completely the wrong direction. Somehow I had remembered the way to somewhere else. When we realised, we were both upset and I felt humiliated. The lunchtime outing was abandoned. We now live in an Oxfordshire village, around which I roll in my power chair. I know the streets just as well as anyone who has lived here for 10 years or so, as I have. Yet even here I sometimes confuse myself and end up on the road to nowhere. I mention the fever, because I occasionally contract a virus and then literally don't know where I am. But that passes.

Tio did not want to know about my Advance Directive when first I e-mailed it to her. But just now, with increasing signs of my memory lapses I decided to talk to her about it again. This was after my doctor, Dr. Whittaker had called on a routine appointment, and suddenly pulled out a form which he said was a routine policy once patients reach the age of 70. I agreed in essence that one of those Do Not Resuscitate notices should be placed in my notes if I ended up seriously ill in hospital. She said "but what about what happened before? When you had pneumonia and you had a fever in which you thought you were back playing rugby against Eton or some other school?" I remember. I was in a high dependency unit and could not contain my bowels, but feverishly tried to conceal it from the nurses. That's one of their jobs isn't it, to clean people up? "I suppose I might automatically resuscitate, and then the least they could do is bring me a cup of tea and a sandwich", I said.

And what about my children? They're no longer children, and two of them have children of their own. The eldest, a very grown-up man now, I remember, sat on his dying grandmother's hospital bed and cheered us all up by joking with her and the nurses about the cuts in the NHS budget. My daughter, Zoe, absorbs every experience and writes about it. Maybe one day I will feature in one of her plays: "The Living Will"?. As for my younger son, Lewis. Not sure -- he knows I'm ill and I suppose he must have realised that I might die, but he is a teenager. He might blame himself. As absurd as that is, I had better talk to him.

For now I suppose the answer is to keep calm and carry on. But I hate the idea of that confusion; suppose it is complete confusion? Maybe I will still have enough marbles to recognise an End of Life Mug? Even one with some marbles painted on it?