A question – or series of linked questions – has been running through my head, about why Connor’s epilepsy and Nico’s musculo-respiratory difficulties were so disastrously ignored, and why Steven Neary’s autism was dismissed as an irrelevance during his stay in the positive behaviour unit.
Was it that, as learning-disabled dudes, they and their physical ailments were discounted? In Connor’s and Steven’s cases, was it that their other symptoms were viewed – and dismissed – as mere manifestations of their supposed mental-health problems? Is it that physical illnesses are seen as things that come from outside and happen to a person, thus meriting sympathy, while mental difficulties are seen as resulting from a failure to manage one’s internal landscape, so that the sufferer deserves only censure for colluding in the causation of their own problem or illness? Or is it just that as people specialise, ‘knowing more and more about less and less’, they can no longer see beyond their own specialism and lose the ability to spot things outwith their narrowed boundaries?
I don’t know what the answers are. But I’m pretty convinced that if a person has a label of learning disability or mental illness, then the attention paid to their physical state tends to be less thorough than it would otherwise be.
I met Richard through my membership of one of the University societies. He had red hair, blue eyes, an ethereally clear tenor voice, an inventive way with wordplay and a keen appreciation of puns, a talent for calligraphy and for creating beautiful, complex monochrome ink drawings with a fine-nibbed steel pen, an enviable turn of speed on his racing bike, a degree in pharmacy, and insulin-dependent diabetes.
He had wanted to read medicine, but his diabetes was of the unstable, swinging-wildly-from-high-to-low-blood-sugars sort that was then (and, for all I know, may be still) called ‘brittle’. The medical schools wouldn’t accept him, even with top grades, as the view was that the stress of medical training was likely to aggravate his condition, and the condition was likely to prevent him from ever taking up a post as a doctor. The pharmacy degree was a second-best option, and after graduating, he decided that actually, he didn’t want to spend his life behind a counter in Boots, checking pills under strip-lights. Instead, he went to work for the City Council’s Leisure Department, running sporting events, which at least got him out into the daylight, although it didn’t particularly tax his capabilities. “I just have to make sure they know what they’re doing, where they’re going – and whether they’re taking sandwiches,” was his cheerfully wry take on his job spec.
Nowadays, most insulin-dependent diabetics will test their blood glucose before every meal, using a smart meter that calculates a dose of insulin precisely tailored to their blood-sugar level, their body’s insulin sensitivity, and the carbohydrate content of the food, but twenty-something years ago, blood-glucose test strips were not available on a GP’s prescription. You either had to buy them (at an astronomical retail price) or cadge them from a sympathetic hospital doctor. Without the flexibility offered by frequent blood testing, the diabetes treatment regime consisted of fixed doses of insulin, and fixed amounts of carbohydrate permitted per meal, and if you miscalculated, you wouldn’t know it until either (a) you did a pee test and found you had been very sugary for the past several hours, or (b) the bottom fell out of your blood glucose and you went ‘hypo’. Richard had a tame hospital medic who kept him supplied with strips, but a decade and a half of the no-test regimen had taken a toll. Having run sugary for months and years, and then having been nagged to rein in his blood-glucose drastically, he no longer noticed hypo warning signs until his blood-sugar was way below normal, and when he did go hypo, it was often spectacularly, complete with staggering walk, slurred words, chalky complexion and an obstinate insistence that there was nothing wrong with him. All his friends knew that “‘M fine! Nothing wrong with me!” was the cue to pin him down and force him to puncture a finger to prove himself mistaken.
Nevertheless, he managed for a long while not to let the diabetes affect his work, hauling himself in on time despite still being groggy from overnight hypos and the terrible nightmares that they generated, and surviving erratic mealtimes by crunching dextrose tablets and swigging sugary fizzy drinks. But when he started having ‘fitting’ hypos, during which his blood-glucose would plummet so rapidly and so far that he would collapse, unresponsive and twitching, work became problematic.
A little earlier, his annual eye check-up had revealed that the the years of high blood-sugars had caused diabetic retinopathy, and he needed extensive laser treatment to cauterise leaking capillaries at the back of his eye. The laser treatment began to affect his sight – “My own permanent private firework display” – and between that and the hypos, he had to hand in his driving licence. Then one dreadful evening, as he sat in the train on the way home, he saw beyond the window a red sunset that had nothing to do with the atmospheric conditions and everything to do with a haemorrhage inside his eye. Further laser treatment, surgery to remove the blood-filled vitreous from his eye and replace it with liquid silicone, another operation on the other eye to repair a detached retina, all failed. Although he could still distinguish between dark and light, he had so little useful vision left that he was registered blind. He had lost his sight, his job, and his ability to draw, write, read, drive and cycle. Now that he could no longer read music, and could not easily move around safely on stage, he also had to give up most of his singing, and with it, most of his social life.
He was assigned a social worker, who, while in many ways a pleasant and well-meaning woman, nevertheless drove him nuts. Herself blind since birth, it seemed she could neither understand nor empathise with the feelings of someone mourning the loss of their sight. Nor, apparently, did it occur to her that Braille – about which she was volubly enthusiastic – was going to be problematic for a person whose fingertips were scarred by years of fingerprick testing and numbed by diabetic neuropathy. About the time that I moved to the south-east of England, Richard got himself onto a Master’s course in computing, hoping that technology would offer some fixes that could help him compensate for his disability, but despite text-enlarging screens, text-to-speech software, and the services of a note-taker and reader, he was unable to complete his dissertation and had to drop out.
After that, it could astonish no-one that he should be diagnosed with depression. He was prescribed the latest in SSRI anti-depressants and offered a course of the newly-popular cognitive behavioural therapy, which left him rueful and exasperated with the psychiatrist, whom he nicknamed ‘Dr. Optimism’.
“I’m his hard case,” he told me, with a soupçon of relish, during a phone-call. “I keep asking him how developing a positive mental attitude is going to help me see better. He says it’ll help me adapt to my blindness and I tell him I don’t want to adapt. I don’t like being blind, so I don’t want to accommodate to it, would he? He says it’s not about him and off we go again.”
“What I’m hearing is that this CBT malarkey isn’t what you want. So, what do you want?”
“What I WANT is to have my pancreas and my eyes working again. I’d SETTLE for being able to do a few useful things and a few enjoyable things. What I GET is isolation, boredom and a patronising git who is telling me in so many words that I need to buck my ideas up a bit.
“I don’t want therapy and I don’t want people throwing pills down my throat to put themselves out of my misery. I don’t want to be treated as though I am the problem, when it’s my circumstances that are the problem. If I’m going to talk, I want it to be to someone who can understand that, which is why I hope you won’t mind if I phone for a rant from time to time.”
“You’ll be welcome.”
I don’t recall if or when he stopped taking the happy pills, but I clearly remember how, over time, his outlook deteriorated. Even down several hundred miles of phone line, the misery was clearly audible.
“I feel really awful. I’m tired all the time, it’s an effort to eat, and even if there were somewhere for me to go, I don’t think I could be annoyed going. They tell me that it’s all psychosomatic, but that doesn’t make it any less unpleasant to live with. I can’t see any good reason for carrying on living. Nothing I do has any value, and I don’t enjoy doing it, so what’s the point?”
I cradled the phone against my ear, feeling my spirits sinking into the horrible empty gulf that had opened up in my middle, and picked my words with extreme care. “I would miss you dreadfully, we all would. But I am there for you very little of the time, and I know the same goes for everyone else. If you want to go, you have the right to go; and with the love and good wishes of your friends.”
“You’d let me go?” he said, disbelief in his voice.
It felt safe to laugh a little. I won’t pretend it wasn’t a little sawtoothed, but I was glad I could manage it. “Well, from this distance I could hardly stop you anyway, could I?” I paused, sought for a tone that would be serious without being solemn. “But look, even if I could, I wouldn’t, not if you get to the point where you are truly sure you’ve had enough. Ever since I’ve known you, you’ve been pushed around by diabetes and blindness and by people you’ve met because of the diabetes and so forth; I hope you know I’m not up for joining in with pushing.”
Very quietly: “Thank you.” Silence.
Hesitantly, I said, “One thing – how would you feel about letting me know in some way if you do decide to go? I promise I won’t try to talk you out of your decision, but I’d like to be able to say a proper goodbye.”
Long pause. “I know you won’t try to stop me, although it’s a delaying tactic, isn’t it?”
“I suppose it is. If you don’t feel able to to make any commitment about it, that’s fine too.”
Even longer pause. “OK. I guess you’ve earned it. I promise I won’t leave until I’ve said a proper goodbye.”
The next phone call I got was not from Richard, but from his parents, who lived in northern England. “He’s not answering his phone. We’ve called the Infirmary, and he isn’t there, so we called the social work department, but they say that owing to confidentiality, they can’t give us any information about him or even confirm that he’s a client of theirs. You know his friends and where he might be likely to go – would you mind making a few enquiries? We’re worried….”
After calling everyone I could think of, to no avail – and after a couple of local friends had been persuaded to go round to the flat and had reported their failure to get an answer to the loudly ringing doorbell – I phoned the social work department myself. By now, it was late in the evening and I didn’t get Richard’s social worker, but the duty cover person, who repeated the spiel about confidentiality, but added, with what seemed to me to be slightly odd emphasis, “If you have concerns that a person may have suffered an incapacitating health problem at home, you need to call the police. They can do things we can’t.”
I called the pollis and had a pleasant chat with the station officer, who confirmed that if no-one was answering at home, the police were permitted to break doors down to see if the person was ill, and to institute enquiries if someone was missing unexpectedly. “Well, as I’ve explained, his family has good reason to worry about his physical health, and it’s not like him to disappear without warning. But you might want to call the duty social worker before you send a team out with a battering ram. I just have a prickle in the nape of my neck which says that fella knows more than he’s willing to tell me; but he might be able to tell YOU and save everybody a lot of worry and trouble.”
The policeman called back ten minutes later. “Ye were richt aboot the social worker. We dinnae need tae go an’ pit the laddie’s door in, an’ Ah can tell ye he’s in whit they ca” a place o’ safety, he just disnae want emb’dy tae ken whaur he is. But dinnae fash yersel’. They lot doon at the social mayn’t be able tae say whit’s whit, but come the morn, Ah’ll be sendin’ one o’ my lads up the road tae — er, up the road tae whaur he’s bidin’ the noo, tae mak’ sure he’s a’richt. ‘S’matter o’fact, Ah micht just be takin’ a turn oot there masel’ and tellin’ the heid high yins there that they need to rethink their confidentiality policy ef’n it means fem’lys huv tae start wastin’ pollis time, settin’ them lookin’ fur folk that arenae really missin’.”
Having noted, as I am sure the canny pollis meant me to do, that telltale ‘up the road’ phrase, I was accordingly unsurprised to get a call from Rigg a couple of days later. In a flat, bored voice, Richard said that Dr. Optimism had become sufficiently worried about his, Richard’s, state of mind and ‘suicidal ideations’ to arrange for his enforced admission, and that he would prefer it if I didn’t share with his parents that he was an involuntary patient. I said I was sorry to have disturbed him, and was it all right to let his parents know that I had spoken to him, but not to let on his location? He agreed, indifferently.
Over the next few months, I received intermittent calls from the Rigg patients’ payphone, which I would call back into. After a few weeks in hospital, Richard’s benefits had been stopped, and coins for the phone were in short supply. He was having a lot of group and individual pyschotherapy, and had been messing about trying to be creative with clay and oil paints in occupational therapy, but he sounded as down as ever.
One day, a call came in, with the distinctive ‘clonk’ at the beginning as the 10p piece dropped at the other end. “Hiya!” said the familiar voice, with a jauntiness that I had almost forgotten.
“Oh, hiya, d’you want me to call back? Usual number?”
“I’m not in the Rigg,” said Richard, with emphasis. “I’m in the Infirmary. Here’s the number.”
I dialled and heard only half a ring before the receiver was snatched up.
“So, what gives? You sound remarkably well for someone who’s in the Infirmary.”
“Had my diabetes checkup. Guess what? My serum creatinine and blood urea nitrogen are through the roof and I’ve got proteinuria levels that mean you could make omelettes from my piss. I’ve just spent the last twenty hours on dialysis and I’m completely bloody knackered, but I feel like myself again. All the crap in my system, all the poisons my kidneys haven’t been filtering out – they’re the reason I’ve been feeling so utterly shite.”
I was too stunned to be able to utter a word.
“And I’ve wasted six months in that fucking hellhole” – his voice suddenly split and the next few words came out as gasps – “While they they tried to cognitivefuckingtherapp me out of being blind and having kidney failure.”
