I don’t, obviously, know how it is in your house, but in ours, you can almost guarantee that if one person goes down with a lurgy, others will follow domino-fashion. The last three-and-a-bit weeks have been dominated by a nasty, week-long, antibiotic-requiring bug that attacked Eldest to begin with, then felled Grenouille, and went on to make their Papa’s life a misery.
However, on the last Saturday in February, when E was just beginning to emerge from his cocoon of gloom, and G hadn’t yet fallen off the lip of the catastrophe curve into the pit of snuffledoom, their Papa and I finally got to see The Theory of Everything. Getting to the cinema – something we used to do as a spur-of-the-moment thing – is these days more akin to a trapeze artists’ routine, requiring much advance planning, co-ordination, split-second timing, and an acceptance that the slightest hitch will be disastrous. With only 3 hours’ respite in hand, you have to have everything lined up in advance and be at the front door in your outdoor shoes and coat as the carer walks up the path, to do the handover on the doorstep. You can’t go further afield than the local cinema (10 minutes to drive and park) and you have to wait for the film you want to see to come up in a slot that coincides with the carer’s allocated hours. Three hours to get to the cinema, see the film and get back again is a pretty tight fit. G’s respite carers are stellar about finagling their start and finish times to suit us if the slot is a near-fit, (and we do our best to reciprocate when they have their own domestic difficulties) but it’s still something of a rare treat to see a whole film in the cinema. It doesn’t matter that it’s not an evening out. A lunchtime matinée is fine by us.
As for the film – well, I mostly enjoyed it. It was beautifully shot, and Eddie Redmayne’s already Oscar-winning impersonation of Stephen Hawking was a masterclass in observation. I do share some of the unease felt over the plaudits heaped on able-bodied actors for ‘cripping up’ and the narratives of ‘disability heroically overcome’, especially when for many, being disabled comes before, and therefore prevents, the mere possibility of getting within a country mile of a chance to shine. Although Hawking developed motor neurone disease in his early twenties, a very young age for this condition, he had had ample opportunity to show that he was one unusually smart cookie, before his physical powers began noticeably to wane. People were aware that whatever his body might fail at, his mind was fiercely alive and creating. Nowhere was this more evident than in the ‘pneumonia’ episode, in which his first wife is adamant that he is to be given every chance to live, even if that means a tracheostomy and lack of speech, an air-ambulance home and a round-the-clock nurse; she remains unshakably loyal to his mind and its possibilities, even though she is already in a relationship with the man who will become her second husband after she and Hawking eventually divorce. What, I wonder, would have become of Hawking if MND had robbed him of the power of communication before he had had the chance to show how brightly he could shine? All that intellect and potential would almost certainly have been boxed in forever. Who would have bothered giving a prototype voice synthesiser to someone who wasn’t already a world-famous scientist?
Stephen Hawking is not just a very clever man, he is also very shrewd (the two definitely do not necessarily go together). Years before the advent of social media, he was working mass-media platforms that allowed him to extend and enhance his public persona; appearing on Star Trek and more recently in The Big Bang Theory and on Comic Relief; refusing to let go of his iconic ‘Perfect Paul’ synthesised voice when his computer and software were upgraded (I am as certain as if I had it calligraphed in Jeremy Hunt’s blood on vellum, that a less high-profile disabled person would have been obliged to accept whatever voice the commissioners deigned to provide them with).
He is also good at cultivating one-to-one relationships. My sister-in-law met him a few years ago when she was doing some work at Cambridge. As a result, E became the proud possessor of a signed copy of George’s Secret Key To The Universe, one of the children’s books that Hawking has written with his daughter Lucy; my sister-in-law is permanently in awe of him as a person as well as an academic; and now all of you know that Professor Hawking is generous towards random co-workers’ small nephews.
The ‘blink-poet’ Adam Bojelian, on the other hand, is an avid twitter user, using the handle @Adsthepoet. Adam has cerebral palsy; like Professor Hawking he uses a wheelchair for mobility and is ventilated via a tracheostomy. Adam communicates by blinking responses to multiple-choice questions, by selecting words from online lists, and by using a letter board, from which his mother painstakingly transcribes his compositions letter by letter.
At only ten years of age, Adam wrote this hilarious rhyme about why Santa’s deliveries depend, not on reindeer, but gibbons. His writing since has earned him a gold Blue Peter badge, a Highly Commended in a national short story competition, and a Brit Writers award. However, Adam fatigues quickly and his health is always precarious. He has spent extended periods in hospital and on the 28th of February, he was in Leeds Children’s Hospital, very ill, and unable to access the PICU. In the rush to get cinema-ready, I hadn’t even glanced at twitter that day, but when we got home, there was a series of a dozen frantic tweets posted by his parents on Adam’s account:
(12) If any of Adam’s friends can do anything to help please do. Thank you to @LTHT_People providing wonderful care for Adam.
I didn’t know what a GCS of 3 was, although it was evidently deeply undesirable. Turns out that it’s the minimum level on the Glasgow Coma Scale, a tool designed to assess severity of acute brain injury. The GCS scores neurological functioning against verbal responses (not available from an intubated person like Adam, so minimum score of 1), motor responses (not available from quadriplegic person, so another 1) and eye movement. Normally, Adam would score top on eye movements – ‘spontaneous’, giving him an overall score of 6 (and arguably, there’s another level of functioning above this – ‘purposeful’ – as in, Adam communicates by blinking, which ought to score enough bonus points on the Motor and Verbal parts of the scale to take him right out of any suspicion of being comatose). But at the end of February, Adam was too poorly to open his eyes at all, and apparently a doctor who didn’t know him was insisting that Adam’s rock-bottom level of function was not a sign that he was unwell, but was simply his normal state.
Eventually, someone did listen and Adam was transferred to PICU, where he remains at the time of writing, and where he has spent the intervening weeks fighting off sepsis, amongst other nasties. His mother was blaming herself for not having made enough of a fuss earlier, thus avoiding the tussle with the wilfully deaf doctor altogether, but I am not convinced that it would have made a huge difference. As my father used to remark, “There’s none so deaf as them that won’t hear”.
Adam’s parents started ‘listening’ to him when he was a baby. They noticed he would blink in rhythm to the claps on ‘If You’re Happy And You Know It’. He would also blink in response to questions. They were not sure if this was purposeful, so consulted a family member who is a consultant child psychologist. This lady agreed that the blinks did seem to be deliberate, and while issuing the standard warning that it was too early to be certain, added a golden piece of counsel: that the family should interact with Adam on the assumption that his blinks held meaning ‘since it would be unbearable if he were reaching out … and no-one paid any heed’.
How right she was. There are few things worse than not being listened to when you have something important to say. It reduces a person from a human being to a nonentity; a soundless puff of vaporous nothingness; a mere ghost in an ad-hoc gulag; Patrick Swayze unable to tell Demi Moore that Tony Goldwyn is not what he seems, and no Whoopi Goldberg in sight.
I suspect the process leading to such depersonalisation is in the form of a theorem that goes something like this:
THE THEORY OF NOTHING
That anyone whom I deem not to be my equal is nothing.
1) I am in charge here. It is a difficult position, but one that I can fill because I am clever, knowledgeable and strong. My cleverness, knowledge and strength are proven by my being in charge.
2) Anybody who is not in charge here must therefore be less clever, less knowledgeable and weaker than I am.
3) Weak people who lack cleverness or knowledge cannot hold valid opinions.
4) People associating themselves with the stupid, ignorant and feeble must themselves lack cleverness, knowledge and strength, so their opinions and information cannot be valid or relevant.
5) Ergo, none of these people count.
6) If they do not count, they do not have a right to exist. Their physical presence or absence is an irrelevance. They are nothing.
The theorists of nothing seem prepared to make an exception if someone can prove to the theorists’ satisfaction that they are clever etc., so Stephen Hawking’s work qualifies him for a permanent free pass out of the nothingness enclosure, and Adam’s poetry is at least an application for the exit visa. But what happens if you can’t evidence your worthiness to be classed as a person? What happens if one day some event unexpectedly pushes a hitherto equal into one of those categories of unperson, to the wrong side of that barrier?
Of course the nothing theorists are wrong. People are not valuable because of their cleverness, knowledge, strength or any other demonstrable attribute other than their humanity. People are valuable because they are people. This is not a theory. It’s a basic premise, which the nothing theorists don’t accept.
The kicker is that the adverse effects on real people of that non-acceptance is far from theoretical.