We have this little group. You might call it a drama group. You might call it an activity group. You might call it therapy. I don’t like the word therapy. It suggests (to me) that there is something wrong. I know some people don’t see therapy like that, but believe me, I’m keen for people to do drama, not drama ‘therapy’. Sure, I know drama can be therapeutic, but for me it’s about being creative, about being alive, about self expression. And above all, about communication.
Heather is in the ‘group’. When I tell you that Heather is a wheelchair user who has incredibly limited movement you may instantly start labelling her. Paraplegic? Quadriplegic? Oh no, it’s much worse than that (someone might whisper to you). Heather’s ‘not all there’. What? What do you mean ‘not all there?’ Whenever I meet Heather and hold her hand (as I do frequently in this group setting) she is certainly all there. She’s not a ghost. She’s real. Visceral. With (I imagine) hopes and dreams and likes and dislikes just like you and me. The only difference is she can’t convey them easily. Which means that she’s stuck with the label of ‘learning disability’. Actually, it’s worse than that. Her label is ‘profound and multiple disabilities’. That means A LOT. We are not using the word profound in terms of ‘intellectual depth’ here (though sometimes I wonder if we might not be better to use it that way and try to plumb the depths to understand rather than to be so quick to label).
Well, the practicalities of this situation mean that for one hour a week Heather and I sit in a circle with a few others – usually between four and eight – and play drama games. Not for therapy. For fun. It’s not even fun therapy. But it is usually fun. I think there’s more to it than fun though. I think it’s about communication. Not communication therapy you understand. Just communication.
Now you may wonder how it can be that Heather can communicate in such a setting. I’ll admit it’s not easy. For any of us. The first problem we face is making sure Heather actually gets wheeled into the group. I am still raging about what happened this morning. That’s why I’m writing this piece. It’s my way of communicating something I find unacceptable. Something I have limited control to do anything about. I’m luckier than Heather. I have ways of communicating, even if people don’t listen to me any more than they do to her. What happened this morning was that Heather wasn’t at the group as we were about to start. Sharp at 10 am. I asked where she was. There was a bit of shuffling and lack of eye contact and eventually I found out that she was ‘still on the bus’. The bus in question is known as the ‘blue’ bus. It’s the one which goes round picking up all the people with learning disabilities who come to the activity centre each day. Why is Heather stuck on the bus? Because the ramp which takes her wheelchair down to ground level had stuck.
I’m glad I asked; because when I did, and okay, maybe I made a bit of a fuss, I discovered that the ‘plan’ such as it was, was to leave Heather on the bus till the end of the day. Okay they’d come and feed her and presumably change her pads or whatever ‘personal’ care she requires, but hey, the plan was just to leave her there. Because it was broken.
Because she was broken? Who else would be left on a bus for eight hours simply because a piece of machinery was stuffed and no one could be bothered to get someone to fix it. I know people get left on trolleys in hospitals for hours on end and maybe, maybe you do think I’m over-reacting here, but I’m sorry, I think it’s profoundly and multiply iniquitous that someone with limited communication and massive ‘needs’ is just going to be left on a bus like so much broken machinery. Not if I have anything to do with it.
I don’t like conflict. I don’t like making a fuss. I don’t like to complain if I get poor service. But sometimes I realise that you have to stand up for what is right. So I did. I made my feelings fairly clearly known. Well, actually I just suggested we might either a) try to get the ramp fixed or b) carry her off the bus or c) we’d move the drama circle to the bus and do our session there. Doing nothing and leaving her on the bus was not one of the options I outlined.
I think it was the third comment that got them. They could see chaos that is our drama circle (which frightens a lot of them though they don’t admit it), moving from the circle out to the bus and that sounded a bit too out of control for the authorities to handle. So they did what I suggested second and managed to lift Heather out of the bus and then lift her chair out of the bus and it was a bit of hard work and some sweat and yes, possibly someone had to fill out a risk assessment form but you know what, in ten minutes Heather was back with the group, in her chair, in the drama circle, holding my hand.
Ready to play the game. The game Heather likes to play is Animal Noises. And since she’d had such a poor start to the day, it seemed only fair to start with that. You may think you see a problem here. Heather can’t make any recognisable noise. And she can hardly move. Note ‘hardly’. It’s all a question of how deeply you look. How profoundly you pay attention. Over time we have noticed that there is some movement. She can hold my hand. She doesn’t squeeze hard but she is doing the holding, it’s not me holding her. She can wave that hand about a bit, for a short time (when she’s not holding mine obviously) and she can stretch her neck and put out her tongue. With effort. Beyond that, like so many people with profound and multiple disabilities, she talks with her eyes. I’m still learning how to read eye-talk, it’s not that easy, but believe me, it can be done. It just takes more effort. Well, you don’t just leave someone on the bus now do you? You don’t just ignore the only way they can communicate? You learn. You try. You go to where they are. If you can’t meet them half way, you go as far as it takes to meet them. Well, that’s what I do. That’s nothing other than common sense and common decency in my book.
So back to the game: animal noises. Colin goes first. He’s a tiger. He roars. Then Chris. He does a mean monkey. Then Bob who is a frog today ‘ribbit ribbit’. No, actually Bob is Kermit the frog so he gives us a rendition of ‘it’s not easy being green’. We are flexible in our interpretation of the rules of this game. Our game. Our rules. Yes, it may scare you, but I have to tell you, largely we make it up as we go along. That’s how life works isn’t it? That’s how our group works anyway. Steven is also in a chair with limited movement but he has one of these Augmented Communication Aids and he can push buttons with his finger and he chooses to be a dog and has a good bark noise on his ‘board’. Then we come to Heather. Heather is a giraffe. Being a giraffe means making no noise at all and just stretching your neck as far as you can and sticking out your tongue. Heather does that. She likes to do it. As much as you can smile with your neck stretched and your tongue out, she smiles. And she smiles with her eyes. Look profoundly enough and that’s easy to see.
So there we are. For one hour a week a group of ‘labelled’ people make their own rules and play their own game and have fun and there’s not a bit of therapy in sight. Heather has had a long journey this morning. From being isolated and stuck on the bus, she’s come into the group and taken her turn at playing ‘animal noises’. When it’s not her turn she holds my hand. When she likes someone else’s noise she does the smallest squeeze, or makes the smallest kind of squeak that she can do, with a lot of effort, if she’s really, really happy – like when Chris does his monkey noises and jumps round the circle like a monkey would do. Heather loves that. She loves to be taking part. I can read eye-talk enough to know that.
We’ve all come a long way in this one small hour. We are all learning to communicate with each other in more meaningful ways. And we are learning to watch each other’s backs as well. Colin tells me that if Heather gets left on the bus again he’s going to roar like a tiger till they let her off. Bob goes close to Heather and despite not liking eye contact, he makes it with her and says: ‘Heather, you are the best giraffe in the world,’ and she smiles with her eyes. I hold her hand. And we speak to each other with our eyes. I’m not telling you what we said. Some things are too private. But I can tell you, it isn’t therapy. It’s friendship.
A man was walking on a remote beach. He came across a girl cooking fish on an open fire. The fish smelt beautiful and he was overcome with desire to taste it. The girl, seeing his longing, offered him a bowl of the fish. It was moist and tender and quite unlike any fish he had ever tasted before, even though he had eaten at all the best restaurants and could afford all the most expensive dishes. When his bowl was empty he said to the girl, ‘I have never tasted fish like that before.’
She smiled and said nothing.
From that moment on, the man could think of nothing else but tasting the fish again. The next day he woke with an intense hunger. It was less a hunger of the belly than a hunger of the spirit. His hunger was for the fish, cooked by the girl over an open fire. He walked down to the beach and in the distance he saw the girl fishing. He stood and watched as she cast and played the large sea-rod. His anticipation grew along with her struggle, as she reeled the fish in. He watched her deftly gut and fillet the fish and place it on the fire to cook. His nostrils were filled once more with the delicious aroma. His whole body craved to taste the fish again.
He sat beside the girl as the fish cooked. ‘I would love to taste your fish again,’ he said. ‘What can I pay you for it?’
The girl smiled. ‘I do not pay the sea,’ she said and handed him a bowl of the freshly cooked fish.
Meal after meal the man came back to taste the wonderful fish, cooked over an open fire by the strangely beautiful girl who seemed to spend all her time fishing, cooking and tending her fire. No matter how many times he ate the fish, his hunger never abated and his thirst grew for understanding of the girl. He wanted to find a way to repay her, but he did not know how to.
One day as they ate their fish together he said, ‘Your fish is so delicious I am sure it would fetch the highest price at the markets and would grace the tables of all the fashionable restaurants throughout the world. If you caught twenty or thirty a day instead of two or three…’
‘Why would I want to catch twenty or thirty fish a day?’ she asked.
‘With the money that you made from catching the fish you could buy things to make your life easier,’ he continued.
The girl looked at the man and smiled.
‘Two or three fish a day,’ she said, ‘is all I need. You suggest I should spend all my days fishing. How would that make life easier?’
‘Ah,’ the man replied, ‘but with the money you made you could employ other people to catch the fish for you. You wouldn’t have to work. You could take it easy, enjoy life.’
‘And how should I enjoy life?’ she asked.
‘Money buys freedom,’ he said. ‘You could go to the city, travel, do whatever you wanted.’
She smiled. ‘Eat fish at one of your expensive restaurants?’
The man felt that she was laughing at him. He was trying to help her and she did not seem to appreciate his advice. He looked at her, saddened. Then he noticed that her face had lost its smile and had become serious.
‘So your advice is that I catch more fish, make money by selling the fish, with the money I make employ other people to do the fishing for me, leaving myself enough time to do whatever I want to with my life?’
‘Exactly,’ he replied. Finally, she had understood him.
‘But I do what I want now,’ she said. ‘I catch fish, I cook fish, I tend my fire. I can sit all day thinking, and all night looking at the stars. I do not have to bother with money or employees or profit, or whether I can afford to eat fish in a fancy restaurant. If I do all the things you say I will only end up where I already am. At best with more effort at worst less happy. What is the point of that?’
The man had no answer to her question. As he licked the rest of the fish from his fingers he realised that far from showing the girl a way that she could improve her life, she had perhaps shown him a way to improve his. He looked around the beach.
‘Let me stay here with you,’ he said. ‘Teach me to catch fish so that I too can sit by the fire and live as you do.’
The girl held silence for a time.
‘I catch fish, I cook fish and I eat fish,’ she said. ‘That is enough for me. But you crave fish, you dream of tasting fish, you want more and more and more. It is not the same. You would not be happy with this life.’
As she spoke, the aftertaste of the fish turned sour in the man’s mouth and he realised that she spoke the truth. As long as he stayed on the beach he would have an obsession, a craving which he could not fulfil. He would never be able to taste enough of the delicious fish and his life would become more and more miserable. He realised that the only thing for him to do was to leave the beach, leave the girl and never taste the fish again. He stood up, sad but somewhat wiser.
‘Think of me when you eat fish in one of your fancy restaurants,’ the girl said.
‘I will never eat fish in a restaurant again,’ he replied. ‘But I will think of you all the same.’
The man left the beach and only when the fire was a speck in the distance did he turn round to allow himself a last look at the girl with the perfect life.