The Last Custodian Stephen Lightbown (Burning Eye, 2021)
Many people will use a wheelchair sometime in their life. After an operation, though probably well enough to walk, you might have to obey the conscientious hospital staff and be pushed in one to taxi or car-park or bus-stop. In that few minutes through the hospital corridors your world will change. Your line of vision will diminish but not as much as your innate sense of personal authority: you will find people talking across you, for you, even about you. You will find, even in some hospitals, the doors open in such a way that you have to manoeuvre, or be manoeuvred, awkwardly – stop, reverse, start – to accommodate their geometry.
You might also experience the sense that you could go much faster in that chair, a kind of wheeled weapon, but for being held back by the person ‘guiding’ you.
You could argue that everyone uses a wheelchair at some point in their life for another reason: because a pushchair or buggy is really a variety of it. Clearly mothers, who for structurally sexist reasons are most likely to be pushing buggies, know how difficult getting that mini-vehicle around the built world is, but they have no political clout: the infrastructure is just appalling for buggies and wheelchairs alike – though with key differences in favour of the children’s market – and it is clear that women, just like the disabled, have had to fight very hard for every inch of power so far ‘granted’ them.
Some people will be longer-term wheelchair users or have family or close friends who are, or they may be professional carers, and so have plenty of experience of the difficulties. Getting on a bus, for example: they will know how buses are designed to pit those in buggies against those who use wheelchairs. It seems it has never been conceivable that a bus should have enough space for a sleeping baby in a pushchair and for a wheelchair user. Wheelchair users will also know how easy it is for ‘possession is nine tenths of the law’ to be a law: before their eyes a passenger, clearly destined for the airport and occupying the wheelchair space with their luggage, will firmly stand their ground, their well-earned holiday the priority, they believe, before a wheelchair user’s mere daily commute. (Incidentally, disabled people are far more likely to be out of work than their abled peers, though as capable to work in many roles).
And yes wheelchair users themselves. My daughter and a close friend are wheelchair users so I have some experience of the things I’ve just described but I can only guess at the anger or, sometimes, beaten-ness of those who must use wheelchairs regularly themselves. One part of that frustration is about what might have been and might still be in provision of built and social infrastructures. Wheelchairs and even lifts are very ancient inventions, evidence of their existence predates the birth of Christ. Yet for millennia those who would most benefit from them have not been seen as part of the future these inventions could make.
The commissioning agencies of underground systems, for example, couldn’t imagine that wheelchair users could ever be part of a public future: like women, the disabled were not seen as fully public people and so, like women, public design could not happen for or with them.
The 1st World War brought many male casualties who, having made sacrifices (they thought) for the public, would now need wheelchairs to be part of that public and a built world that would accommodate them. While there was much activity for the safely dead, with memorials built here, there and everywhere, the transport infrastructure would design the surviving physically disabled out of normal public life (closed institutions would do the same for those suffering mental trauma). This set the pattern for Remembrance Day: a sombre fest that pretends to ‘remember’ the many dead without paying proper attention to either the causes of continuing wars or the living casualties of contemporary conflicts, many of whose ex-soldiers live rough, discarded among the litter.
That the people affected were and continue to be overwhelmingly working class also speaks to their relative powerlessness in the enduring political system. If the public have complained they haven’t made it a sufficiently political complaint. Instead, in the case of war casualties, ‘Remembrance’ is a kind of woozy Feels-so-sad-it-must-be-good Month. It anaesthetises against social action for peace or practical help for veterans. Those poppies are indeed opiates. The country is Remembrancing too hard to do any active thinking.
Carers who would also have benefitted from such innovations were overwhelmingly women but we all know how that would go as far as translating to public innovation. The new tube stations post-war, of which there were many, had lifts (rather than escalators) only for the deeper platforms, and there were steps here and there before you got to them, ‘tank traps’ that made sure wheelchair users were barred. Impassable stairways were the default everywhere else.
Even today, underground after underground across the world, even those built post Second World War, lack basic access for those who use wheelchairs or buggies. Retro-engineering proceeds slowly because an ‘economic’ and ‘able’ public argument is assumed instead of a wider public one, so any re-engineering work is done in the gaps of ‘normal’ trade. Sometimes it is even done so with a self-congratulatory tone, as if a favour is being done. In fact, excluding disabled people from work is bad economics because it reduces the natural talent pool and the experiential pool – of those who have had to personally solve challenges the ‘abled’ would not even think of. Even to entertain economics as the primary meaning of public infrastructure, though, is to devalue the human, is to accept and assert that an individual’s role is to be a soft robot for a set of high controllers, the super-rich: surely it is best to leave an existence-as-drudge view of humanity behind.
The future is of course fundamental to disability activism and so the dystopian form – a form that transfers and amplifies disturbing parts of the present into an imagined future – can be a particularly powerful creation for looking at disability now. I have concentrated on war examples here but am conscious that this risks a kind of ‘heroic disability’ narrative in the same way that ‘good immigrant’ narrative seems like a well-meaning approach but in fact pushes contingency instead of fundamental humanity. I do not believe in those narratives and use the war example only because it was a mass event that, even then, prove insignificant for manipulated public policy.
Stephen Lightbown’s The Last Custodian references this approach by making his anti-hero the victim not of some ‘noble’ combat scenario but of an accident on a bicycle. He conjures a world almost completely devoid of the ‘abled’. The blurb is a rare instance of a back cover proving functional rather than florid and it sets the scene:
A paraplegic wakes to find he is the sole survivor of an unknown apocalypse. He decides to survive and spends a year navigating the empty motorways of England to see if he really is the only one left alive. […] Told through a daily account of poems he begins to question his own identity, whether you are disabled if there is no-one to be compared to and what does it mean to want to move forwards.
Lightbown’s poetry is essentially lyric poetry. “You used to sleep so beautifully, / a five-pointed star to curl around” writes our narrator-protagonist Luke, remembering the woman he loved. The minute I say “essentially” I realise that’s inadequate. Lyric is usually pretty static, contemplative, and avoids the ‘unpoetic’ but Lightbown activates the lyric by making the book a what-is-going-to-happen-next diary as Luke explores the post-catastrophe world. This of course is a reflection back to today’s pre-disaster era (well, we are actually in the middle of one, but that is another story). Other tactics assist: he deploys what becomes incantatory repetition at times and its close relative the list-poem; he incorporates short prose sections; an entirely circular poem reflects on Luke’s wheelchair – “I Cannot Move Without You” round and round; and, innovatively, he introduces another visual dimension with the use of images of pebbles, inscribed with significant capital letters (I won’t spoil the meaning).
This is a work about mourning the loved and remaking the world. The poems about Luke’s parents and his late wife are tender with detail and the characterisation of all those Luke remembers is layered and observationally acute– and it is also a work of anger, mystery, and in a way societal recovery. As with all dystopian writing there is a kind of joyful sense of the macabre, whether it’s rumours of severed arms with their own autonomy and personal tattoos or the joy of raiding supermarkets full of pasta. There is something nearly mystical about its ending (again, I won’t spoil this) and the book has, despite all the weapons that knowledge has arrayed against disabled people, a faith in knowledge as key scenes in the national library testify. It only remains to say it is also a really attractive object, designed beautifully and with a striking cover, an artefact to be read now, hopefully activating change, and then placed in the time capsule for future readers, if there are any.
Richard Price's books include Lucky Day (Carcanet) which recounts the early years of his daughter Katie who has Angelman's Syndrome.