Genius

by Clare Nonhebel

CHAPTER 51

  Keith was being interviewed by a television researcher. So far, his mother had done nearly all the talking. He could feel the anger rising inside him again.

  'Thank you,’ said the woman, who was called Rachel. 'So that's the whole list of Keith's operations and hospital admissions. Now, Keith ...’

  'I may have missed one,’ said his mother. 'I wish you could have spoken to Mr Abdul. It's such a shame he's not here.’

  'Mr Abdul only met me this week,’ said Keith. 'I can speak for myself.’

  'Yes, but this lady wants the medical history, Keith.’

  'I know my own medical history,’ Keith pointed out. 'I've lived it.’

  'Yes,’ said Rachel. 'And what I'd like you to talk a bit about, Keith, is what it's been like to live through all ...’

  'He's been terribly brave,’ said Keith's mother. 'He never complains, never. Always a smile for everybody.’

  He thought he had defeated it, this anger. He thought it would have been enough, speaking up for himself as he had, first with Mum and then with Dad. But they still weren't listening. The lions were growling again, hungry for blood. He closed his eyes and prayed.

  'Are you all right, Keith?’ said his mother. 'I don't think he's up to this,’ she told Rachel. 'It's not a good day.’

  Keith opened his eyes. 'I'm fine,’ he said. 'Please go on with what you were saying, Rachel.’

  'But, darling, you will say, won't you, when you've had enough or if you feel you're going to have a ...’

  'Mum, why don't you go back to Grandad now and I'll see you tomorrow?’

  'Go back? Darling, the interview isn't nearly finished - is it, Miss ... sorry, I've forgotten your name?’

  'Rachel.’

  'I can't just leave Rachel here with you. She wouldn't know what to do if you weren't well. It isn't fair on her to give her that responsibility.’

  She was offended and hurt, he could tell. He nearly relented and said she could stay. But if he gave way on this occasion, she wouldn't take any notice next time he objected to her answering for him, and his earlier bids for independence would have been wasted.

  'I'm in a hospital, Mum,’ he said gently. 'If I need anything, I'll call a nurse. I can phone this evening and tell you how the interview went. But I'd like to do it on my own.’

  'What d'you mean, you'll phone, Keith? I'd be coming in this evening anyway. I always come in twice, don't I?’

  'Okay. I'll see you this evening, then.’

  She gathered up her handbag and scarf, taking her time. Her mouth was tense and there were patches of angry red colour on her cheekbones.

  'I'll leave you to it, then,’ she said. She went out without a backward glance, a goodbye to Rachel or a kiss for Keith.

  'I'm sorry,’ Keith told Rachel.

  'Families of disabled children can get a bit overprotective,’ she said. 'Is that a problem with yours?’

  Her pen was poised over the notepad. He didn't want to say that.

  'It may be as much to do with becoming adult as with having certain physical disabilities,’ he said. 'I'm the eldest, and I suppose all parents find it difficult to let their children grow up and be more independent.’

  'Right,’ said Rachel. 'Well, on the subject of independence, Keith, if you don't mind my asking you, how independent can you be in your circumstances? I mean, I don't want to be offensive, so do tell me if ...’

  'No,’ he said. 'Go ahead and ask anything you like. People tend to handle me with kid gloves and it can get a bit wearing. So can having to be the boy who never gets depressed and always has a sunny smile. I hope that's not what you're looking for on your programme, because it isn't me. I can get quite cynical.’

  Rachel laughed, and relaxed, stretching out her legs. 'Good. That'll be much more refreshing than the boy with the sunny smile. Tell me what you get cynical about, will you?’

  'I get cynical about the attempts to redesign me physically, supposedly for my benefit, and about the attitude that no one must mention my disabilities, let alone talk about death, and that I mustn't have any feelings that might upset other people, and about people's attempts to treat me as normal.’

  'What's wrong with being treated as normal, Keith? Isn't that what disabled people want? Or should I say "differently abled" people?’

  'I'm not normal,’ he said simply. 'I don't look normal or function normally, physically, and I can't do normal things. Pretending I'm not disabled or calling it something that sounds more positive isn't the answer. Most people, seeing me for the first time, are shocked and upset. I expect it. I respect their embarrassment with me and I try and help them with it. I do know I'm disabled; I don't need people to pretend they haven't noticed or that the disabilities don't exist. Or that I don't know my condition is terminal. I do prefer people to be honest and blunt, rather than tactful or evasive.’

  'Oh.’ She hadn't been warned about this.

  'So if you'd been led to expect Little Mister Nice Guy, I'll quite understand if you'd rather pick some other disabled young person to interview,’ said Keith. 'I have been well-behaved and smiling in the past but recently I've been feeling really pissed off.’

  'Mmm. Your grandfather mentioned on the phone that you had a strong faith and he thought that helped you. It's not sustaining you at the moment, then?’

  Keith's eyes flashed. 'It is, in the sense that I feel God is prompting me to speak up for myself, not just to sit back and accept everything.’

  Rachel was interested. 'You think God's will means that you fight your condition, not give in to it?’

  'Not fight my condition, no. I'm not talking about willpower, or mind over matter.’ Keith paused, trying to get his thoughts clear. He couldn't have talked like this with his mother here; by now she would have rushed in to fill the gap in the conversation. Rachel seemed prepared to wait for the answers.

  'My condition is me,’ said Keith slowly. 'I was born like this; it's the way I am. I can't imagine a non-disabled version of me. Fighting my condition would be fighting myself. I accept that this is the way God designed me and I believe he must have a good reason.’

  She was scribbling notes on her pad. 'But ...?’ she prompted.

  'But I'm fighting the view that I'm not the best person to decide on my own treatment and that doctors always know more than the patient. And I want to be allowed to say I believe that all these operations to alter bits of me are not always motivated by the aim to ease my discomfort. I'm suspicious of some of the other motives there may be.’

  'Which are ...?’

  'To make life easier for the carers - in my case, my family - by making me an easier shape to lift. For instance, my tendons were cut, to make my legs bend; the knees used to be straight, which made it difficult for people to dress me or sit me on the toilet. That put paid to my dream that I might someday walk, because you've more chance of walking with legs that won't bend than with floppy legs that won't stay straight when you want them to. In my case it was just a dream, that I might walk. But the same operation was done to a boy I know - for the same reason, the convenience of the carers - when it might have been possible for him to walk eventually.’

  'You're saying he would have been able to walk if he hadn't had the operation?’

  'It was a possibility for him,’ said Keith. 'He'd managed a couple of steps, on a few occasions. But the doctor didn't think it was significant.’

  ‘And it was done without the patient's consent, this operation?’

  'He had some degree of damage to his brain. The doctor didn't consult him. He didn't consider him capable of making a decision. Neither did the family.’

  ‘And was he capable of making the decision, in your opinion?’

  'He was capable of being upset about the decision that was made for him, and he made his distress very obvious,’ said Keith. 'Only nobody listened.’

  'Keep talking,’ said Rachel. 'What other motives are there for carrying out operations, even
if the patient doesn't want them?’

  'Medical research. If you're an interesting case with multiple disabilities, there's more to be learned from trying out new treatments and different types of surgery on you than from leaving you as you are, obviously. Sometimes you're asked if you'll have a couple of extra tests done, or try out an untested drug, in the interests of research.

  'On other occasions, I suspect it's done without asking; it's presented as being necessary, beneficial to the patient, when it actually isn't. It all goes to create a fuller case history, of more use to future generations of medical students and research scientists. And carrying out experimental treatments and innovative operations doesn't do any harm to the surgeon's reputation either.’

  'You believe some of the operations you've had might not have been necessary?’ asked Rachel.

  'None of them were actually necessary,’ Keith said. 'Some of them have benefited me. The early ones did. My hands were made more movable, more use to me. And it's easier for me too to have knees that bend. Later on, though, I did wonder why some of the operations made so little difference to me and why the doctors still seemed satisfied with them and keen to get on with the next one. And the more recent operations have actually weakened me. I lost a lot of the use of my arms after the one before this.’

  'And are more operations proposed?’ asked Rachel.

  'Two, as far as I've heard - that is, as far as the consultant has suggested to my father. He hasn't discussed them with me.’

  'What are they for?’

  'To break and reset my left femur, and to break and reset one of my ribs and remove another one completely.’

  'Would that be for your benefit, Keith, do you think?’

  'Would it benefit you?’ he retorted.

  She looked serious. 'It sounds barbaric to me.’

  'That may be because it is,’ said Keith.

  'Whew!’ Rachel flicked back through her notes. 'Look,’ she said. 'I'll level with you. This isn't the interview I expected. What you're saying is quite challenging - quite controversial. I'm not sure if the programme's presenters will go for it, to be honest; they might well tell me to forget it.

  'But I'm interested in what you're saying. You could make a lot of people think twice about only admiring disabled people who accept their fate with a smile and don't make the rest of us feel uncomfortable. And I'm particularly intrigued by your view of faith as a ... what did you say? A prompting to speak up for yourself and fight this way of being treated, rather than sitting back and accepting it as God's will?’

  'I accept my condition as God's will,’ Keith confirmed. 'But I don't accept that the doctors’ decisions about my treatment are necessarily in accordance with the way God wants me to be treated. I've never met a doctor who asked God how he wanted him or her to treat a particular patient. In fact, some doctors appear to believe that medical science is the highest authority. That's dangerous, in my opinion.’

  'Why dangerous?’

  'Dangerously limited. Treatment is only as deep as the practitioner. Some doctors have no love or respect for people, as human beings with all the authority and dignity God gives his creation. Their medical practice starts and ends with an interest in disease and remedies and science. God doesn't come into it so neither, really, does the patient.’

  'So your faith means, to you, that you fight the doctors?’

  'No,’ said Keith. 'I'm not fighting any doctor. They have a job to do, in the way they think best.’

  'Then who or what is it you are fighting? Let me be sure I understand what you're saying here.’

  'I'm fighting for the right to decide for myself what treatment to have, without pressure being put on me to conform to the doctor's advice. I want to take the ultimate responsibility myself, not delegate it to the doctor or to my family. I decide.’

  'Right. I've got that. What about the right to live or die, Keith? You don't mind if I ask you about that? Okay. Well then, would you claim you had the right to end your own life if it became unbearable?’

  'No,’ Keith said. 'I don't have that right.’

  'Why not?’ asked Rachel. 'Isn't that the logical extension of your right to decide your own treatment?’

  'No, it's the opposite,’ said Keith. 'I'm claiming the right to decide what's best for my health and my quality of life. I don't have the right to destroy it. No one has that right.’ He thought of the unborn child he had visualized being aborted, again seeing it writhe.

  Rachel, still writing, said, 'But doctors take an oath to preserve and enhance life, not to destroy it. So if that's your priority as well, how can you be in conflict with their policies?’

  When he didn't answer, she looked up, surprised to find him crying.

  'That used to be their priority,’ he said. 'But these are changing times.’

  She put down the notebook. 'Let's leave it there,’ she said. 'I can see you've had enough for one day. Thanks very much, Keith. I'll be in touch, okay?’

  'Yes,’ he said, so quietly he could hardly be heard. 'Yes, I have had enough.’