21 August 2009
Reminiscences of a day centre in May 1983 ...
When I shook hands with Jimmy there were some kind of warts that covered most or all of his fingers and there were similar markings around his lips. He was rocking from side to side and to and fro. Me, that’s me in my naivety thought he was just drunk. Then I noticed, what I thought were warts were actually cigarette burns that had scabbed over. He later told me he had no feelings in his fingers or his lips. So, his cigarettes would just burn down and then burn holes into fingers and into his lips from keeping the cigarette in his mouth, which he did most of the time!
He then slurred he had Huntington’s disease. I hadn’t a clue what that was? I tried, really tried to understand everything he was trying to say. It was like learning another language but I was getting there. He was half way through the history of Huntington’s when tea and biscuits were being brought around. I was one of the first to be served my afternoon tea, together with the other young spinal guys. The tea servers missed Jimmy even though he was on the same table; they completely ignored him like he wasn’t there.
(“It was always the same routine,” he slurred) “Glamour crips!” he called us. We were always the first. Then it was the turn of the C.P.’s (cerebral palsy) next to be served were all those who were deaf with no speech. This process happened once in the morning and once in the afternoon. Next to be served the tea and biscuits were the elderly. Next were those with mental health problems “the loopy gang” is what the tea servers called them! Then it was the turn of the recovering addicts. The tea-lady finally served Jimmy. Every afternoon and every morning was the same, except if there were official visitors or family. Then everything was served in a correct order. I asked the tea-lady why it wasn’t served like this all the time? “Mind your own business,” she snapped. Then for two days I was served the last tea dregs alongside Jimmy!
I couldn’t fault Jimmy’s openness and yes at times: embarrassing. As far as I was concerned we were all one regardless of our disabilities. Yes, there were arguments like all families, but that’s what we were - a family. The problem being the tea servers seemed to have a stronger voice than we had. Some of us had only just joined the family, and were finding our feet (so to say) ! While others had been in the family all their lives!
Someone had to say something but what, how, who? It was the fear and loneliness of being at home in front of the telly watching nothing more interesting than something like: “Watch With Mother” that gagged us.
Some of the other guys in our little gang of ‘crips’ even spoke of us has a “None People” They also thought that being with other ‘’None People” was far, far better than being with no people at all. Or even worse with people who didn’t want you anywhere near them!
I wasn’t the only who was ashamed from not speaking out. The tea-servers knew we were all scared of supporting Jimmy’s claims of unfair treatment. So, no one said anything, not even an out-of-place look. Nothing was ever aimed at the tea-servers!
Occasionally able-bodied researchers who knew everything there was to know about disability, except disability itself, would visit us from time to time. Yes, they were a pain in the bum and they would report everything they saw, but for those few weeks we were served tea/coffee in some kind of humanitarian order.
I asked Jimmy if his illness was catching or not? He slurred ‘dick head’ for thinking such a thing. I apologised. He said he was going to have a fag outside. It was just like watching someone walk who had, had about ten or more pints of extra strong lager.
I watched him stagger on past the toilets towards the exit/entrance down the corridor down through the stench of piss and shit which layered the corridor near the main entrance. Jimmy would turn around to me and then aim two fingers at the office.
When he returned we carried on our conversations of trying to get to know each other. I was impressed with his honesty but I couldn’t cope very well with him continuously standing then sitting. This was happening way beyond reasonable. I tried not to make it obvious. But I think he could see I was getting annoyed; I tried, really tried not to make it obvious. I asked John, the chef who was nearby if he could get someone to push me to the toilets. John was the first gay man I had met who constantly talked and talked about his ex boy- friend. Who he was still and always would be in love with. John was the main chef of the centre. It was a natural choice.
John and his ex had been partners in a Blackpool Hotel until he caught his boyfriend ‘having it off’ with a stranger! So, John decided to jump from a sixty-foot bridge into a flowing river, but then landed on a tiny stone island in the middle. The fall broke his hips and he sustained a spinal injury, which he half recovered from. It wasn’t that simple with his hips. He walked with a stick and when he wasn’t cooking he chained smoked. Then one day he said he had given in his notice to quit the day centre and was going to find his ex. It was a couple of weeks later when we received a card addressed to me. Why me I hadn’t a clue! The postmark was Rhyl in Wales saying: “Paul is sorry and we are back together – Love John” It was the p.s: Be careful – that’s all I’m saying!
It was a case of escaping or going mad. But how, where and what could I do? Then I discovered I could get a lift to a local college but I would have to sign up for O’levels or something like that.
Nine months later I had failed in everything. That didn’t bother me. That’s how it had been through school. No difference really. It was basically the same: we sat in a classroom and listened while they talked – the same boring talk! The same boring people, with the same boring clothes, who led the same boring lives!
What else was there to do? Besides, I could boast to everyone I was a student. That was until the head of college rejected me, saying the O’ level course was far too much for me. That I should sign on to an adult literacy class. I refused.
Hallgrim’s Church, Reykjavik
That church from
where I’m standing:
here bottom of the hill
and yellow houses
south side of Reykjavik
I’m sure is the space-ship.
let me draw in her maths class
in ’59 while all other kids
were busy working
It has a stair case
on the outside like the one
I pretended to climb
sit, close my eyes
and wait for the count down
But the one thing I had found was poetry – it was the most exciting thing…..I was re-born. My new life was just beginning. Ok, I couldn’t go to college but I had now learned how to write a letter (maybe I was wrong! Maybe they weren’t that boring after all) I sent a copy of my letter to Joe our local councillor.
I never found out what happened to those particular tea servers. But the place has since been demolished!