Time Travel

Almost two years ago Ben went on a school trip. He left on Monday morning and returned on Friday afternoon, and we got some messages inbetween but we were otherwise largely oblivious to what he was doing. We knew he would be okay – we trust the school staff, and his usual night carers travelled with him to be there if he woke – but it was still strange. Not because we were away from him – we have often left him with family or carers. But because he was away from us, which is unusual.

There is an expectation of linearity in childhood. Babies are expected to reach developmental milestones and then continue to tick life stages off the list: walking, talking, starting school, being left at other people’s houses, riding a bike, sleepovers, school trips… Through these stages there’s a distancing of the child from their parent – probably not entirely smoothly (my children often pull away from me for a bit and then return close for a while, before pulling away again) but there is a broad direction of travel. They become more independent both physically (Max no longer needs me to tie his shoelaces) and mentally (Molly will take what her teacher has told her to be true over anything I say). If children have siblings there is an expectation that they are like a little chronological train – the first child makes their way along the track and others chug along behind.

For Ben the path is less linear – in some ways he is right on that track, wanting to watch 12 Certificate Marvel movies rather than the more gentle films I encourage, preferring to listen in on adult conversations than be at the bottom of the garden with his brother and sister, and learning from and communicating with teachers, carers and TV programs as much he does as with me and James. But in other ways, particularly physical, Max overtook him a long time ago and there are ways in which Ben will always be dependent on me and James (or other adults) to help him.

Time, and our family’s passage through it, is not progressive in the way that I had expected. I entered into parenting expecting linear development of my children but it won’t be like that. Ben entering his teens will have no effect on his ability to walk away from me, and yet he is becoming more mature and bursting out of his unadjusted wheelchair. The ways in which I am his mother are in some ways completely different to when he was little, and in some ways (feeding, dressing) exactly the same, so being his mother concertinas time in a way that feels, as Ellen Samuels has said, like time travel.

Ellen Samuel’s essay, Six Ways of Looking at Crip Time, talks about the ways in which time shifts or stretches when you are disabled. It’s a brilliant essay that I would recommend reading – an eloquent insight into how disability affects so many aspects of life beyond the solely physical.

From the essay: ‘Crip time is time travel… Some of us contend with the impairments of old age while still young; some of us are treated like children no matter how old we get. The medical language of illness tries to reimpose the linear, speaking in terms of the chronic, the progressive, and the terminal, of relapses and stages. But we who occupy the bodies of crip time know that we are never linear, and we rage silently – or not so silently – at the calm straightforwardness of those who live in the sheltered space of normative time.’

This made me think about the ways that being Ben’s mother doesn’t conform to the linear path I had been told to expect, because he is disabled. Being Ben’s mother is a process of undoing assumptions, and it’s near-constant work because the world tells us that the right way is chronological and cumulative, and that these things indicate progress. At the beginning, having a child who didn’t do things in the order others did was disorientating. It’s not any more.

Ben will lead the way for Max in some ways (he already has a smartphone, as Max reminds me near daily), and in others he won’t. He will go on school trips, but people will still ask us if he goes to school. He will continue to grow and need ever larger clothes, yet sometimes people will speak to him as if he is a baby. The issue isn’t with Ben, it’s with the ways some people struggle to compute his difference. I can get my head around it, and have, but we are continually butting up against other people who are confused by Ben’s developmental time travel, and express it. I can’t know what that feels like for Ben, but it is annoying as his parent.

Reference: Six Ways of Looking at Crip Time by Ellen Samuels, in Disability Visibility: First Person Stories From the Twenty-First Century edited by Alice Wong.

Link to buy from Bookshop.org here

8 of my Favourite Non-Fiction Books about Disability

I have tried to find books written by disabled people and these are some of the best I have read. These have all given me valuable insight into the experience of being disabled – some are also confronting (which is necessary), some are beautifully written, some are funny. All are worth your time if you, like me, read in order to widen your understanding of people and the world.

A good place to see more is by following #disabilityreads on Instagram.

1. SITTING PRETTY: THE VIEW FROM MY ORDINARY RESILIENT BODY by REBEKAH TAUSSIG

This is one of my favourite books, of any genre. It does exactly what I want a book to do – speak truthfully and lyrically about complex issues. It really digs into the ways that disabled people are made to feel like the difficulties they face are individual, when actually they’re societal. It’s funny, feminist, and powerful.

Buy it here

2. DISABILITY VISIBILITY: FIRST-PERSON STORIES FROM THE TWENTY-FIRST CENTURY edited by ALICE WONG

This is a collection of writing by a really diverse group of disabled people and so there is something for everyone. I have dipped in and out of it, taking my time to read the whole book. The range of topics and styles make it a powerful anthology, representing views and insights that I haven’t read elsewhere.

Buy it here

3. SAY HELLO by CARLY FINDLAY

Carly Findlay is a colourful, insightful presence on social media and her book is just as clear and powerful. She challenges how we approach physical difference and disability, and how widely held assumptions affect her, and is entirely convincing in dismantling prejudice.

Buy it here

4. THE PRETTY ONE by KEAH BROWN

This collection of essays covers disability, popular culture, race, discrimination and how to find joy in complexity. It’s about a woman growing up in America and Keah Brown is a smart, accessible narrator. 

Buy it here

5. CONSTELLATIONS by SINEAD GLEESON 

I don’t often re-read books but I have read this twice. I absolutely love Sinead Gleeson’s writing. This collection covers parenting, femininity, family, love, death and bodies. A lot of it isn’t explicitly about disability, but her descriptions of being ill and using a wheelchair as a younger woman are powerful and affecting.

Buy it here

6. DEAR PARENTS by MICHELINE MASON

I was lucky to see Micheline Mason speak when my son was younger, but this book is a good alternative to hearing her in person. Micheline addresses the relationship between disabled children and their parents. She is both a disabled person and a parent of a disabled child and her insights can feel challenging, but are undoubtedly necessary.

Buy it here

7. WHAT THE **** IS NORMAL? by FRANCESCA MARTINEZ

Francesca Martinez is a comedian and so, of course, this is a funny book about being ‘wobbly’. She combines autobiographical detail with a more general campaign against the ways in which we are taught that normal is best.

Buy it here

8. THE WORLD I FELL OUT OF by MELANIE REID

Melanie Reid became disabled following an accident and so this is an account of coming to disability relatively late. It describes all the ways in which she had to accommodate her changed body, and how that altered the ways she saw and was seen by the world. It is unflinching and compelling.

Buy it here