the cracks that let the light in

8 Of My Favourite Non-Fiction Books That Talk About Disability

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These books have all given me valuable insight into the experience of being disabled or caring for someone who is. Some are confronting (which is necessary), others are beautiful and insightful. All are worth your time and will widen your understanding of people and the world.

I have included my own memoir (in a reluctant flash of self-promotion) because I’m proud of it. Together they are a mixture of own voice accounts by disabled people, memoirs by parent carers, and well-researched non-fiction.

Most are available to buy from my Bookshop.org list here.

1 Sitting Pretty: The View From My Ordinary Resilient Body – Rebekah Taussig

This is one of my favourite books. It does exactly what I want a book to do – speak truthfully and lyrically about complex issues that are personal and also universal. 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, and how it feels to be a woman. It’s funny and powerful.

2. A Still Life – Josie George

George’s memoir is about her life being made physically still and small by her illness and pain, yet full and rich in her mind. She writes so evocatively about all the challenges and triumphs of her day-to-day experience, and helps us reimagine what is valuable.

3. The Cracks That Let the Light In: A mother’s story of raising her disabled son and the life-changing power of books – Jessica Moxham

My memoir about my son Ben and what he’s taught me. A lot about the challenges and triumphs of parenting, his love of books and my hatred of people pitying us.

4. Far From the Tree – Andrew Solomon

This is a huge book that covers the stories of hundreds of parents whose children with very different identities from their own – from autism, to deafness, to complex physical disability. It would be impossible to read in one go – I’ve read a chapter at a time – Solomon’s writing is accessible and represents diverse views while being true to lived experience.

5. Tender: The Imperfect Art of Caring – Penny Wincer

Part memoir, part interviews, part manifesto. Penny covers all of the realities and emotions of being an unpaid carer – the highs and lows, and how it can still be possible to live a good life.

6. Dear Parents – 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 is disabled and a parent of a disabled child and her insights can feel challenging, but are undoubtedly necessary.

7. The Skies I’m Under – Rachel Wright

Rachel writes movingly about how her life is turned upside down when she realises her son will be disabled. Despite her being a nurse and her husband being a doctor, this is a different way of engaging with health services and makes Rachel re-evaluate her life, her faith and her responsibilities.

8. Disability Visibility: First-Person Stories from the Twenty-First Century – edited by Alice Wong

This is a collection of writing by disabled people with diverse impairments and there is something for everyone. The range of topics and styles make it a powerful anthology, representing views and insights that I haven’t read elsewhere.

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My Book is Out!

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The Cracks That Let the Light In: What I Learned From My Disabled Son is about the last ten years of my life, becoming a parent and then working out how to be Ben’s mother.

People often assume that having a disabled child is awful, a pity party. It isn’t. Some things about being Ben’s mother have been difficult, and my learning curve has been steep, but our lives aren’t miserable. In fact Ben is thriving and my children and I try, much like any family, to live the fullest and happiest lives we can. My book is about how being Ben’s mother has changed me for the better. It’s about family love and hope.

There’s a brief video of me talking about why I wrote the book and what it is about here:

‘An honest and unflinching account of Jessica’s journey as the mother of a child born with complex needs. Essential reading… and a source of solace for those who may find themselves on a similar path’ Leah Hazard, author of Hard Pushed: A Midwife’s Story 

‘A powerful, moving and inspiring story – it opens up a whole new world of understanding.’ Esther Freud

‘The Cracks That Let the Light In chimed so clearly with my own experiences of growing up with a disabled older sister and my feelings as a parent. The book reveals that disabilities only make people difference up to a point. And that parenting, and the love of a parent, is the same.’ Rory Kinnear

‘A universal story of family. This uplifting read sets out what it means to be human, how our similarities are far more obvious than our differences and the powerful force of maternal love. I loved every word of it.’  Rebecca Schiller, author and Co-founder of Birthrights

It is available to order now:

Bookshop.org

Amazon

Waterstones

WH Smith

Foyles

Blackwells

The Complexity of Sharing

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I went to a panel discussion at the Wellcome Collection in late 2019 that discussed ‘The Trouble with Charity’. One of the topics of conversation was that disabled people are often seen as recipients of charity, a view compounded by campaigns like Children in Need that tugs at heartstrings to encourage donations. We all know these videos – where poor, sad disabled people need your money to get better equipment or more opportunities.

Most of us will have mainly seen disabled people on screen, or in any media coverage, in these kinds of positions – as beneficiaries of benevolence. Being talked for by non-disabled helpers or being grateful for the charity they have received. The panel discussed how much airtime is given to parents of disabled people, rather than disabled people themselves, and how this reinforces a sense that disabled people cannot talk, advocate, for themselves.

I asked a question to the panel about how parents should approach this issue and the disabled speakers answered thoughtfully but clearly – that parents should not talk for or over disabled people. They shouldn’t take up space in which disabled people could advocate for themselves. 

I feel like my work at the moment is at the heart of this conundrum. I am a non-disabled person who talks about disability, and I could be taking up airtime or attention that would otherwise be occupied by a disabled person. 

But I am also a non-disabled person who unexpectedly became the parent of a disabled child, and the last eleven years of being Ben’s mum have given me a rapid education. Up until his birth I had a probably-typical understanding of disability, which is to say very limited, and I found many aspects intimidating or incomprehensible. Now, I don’t. A lot of my insight has come from being close to and raising Ben, but most has come from listening to disabled people. This took time and I can now see there is an inevitable gap between new parents, who know little about disability, don’t know where to look for information and are worried, and disabled communicators who could help. 

The challenge of being a new parent coupled with the responsibility for a disabled, in my case complex, child means the early years are often very muddled. I found it very difficult to separate which of my concerns were to do with being a parent for the first time (a colossal responsibility and profoundly discombobulating for anyone), and which were to do with Ben being disabled. I wonder whether I could have more quickly come to realise that Ben’s disability didn’t mean our lives would be sad and small, and found the disabled people and their families who were living lives that we could aspire to. 

I think in the early years the gulf between my little baby and a disabled adult, however content, was just too large. I wasn’t ready to anticipate my boy growing up, but I was hungry for stories from other families and to see other parents living lives similar to ours. Through those families, I gradually came to see that there was a whole world of diverse disabled people living lives that were good and true, if sometimes challenging.

All parents are thrown in at the deep end, despite being surrounded by advice and people in similar situations. No parent does everything perfectly. New parents of disabled children generally have even more to contend with, yet are less likely to find themselves represented when they look around. They may depend on their experience of disability so far – the campaigns they have seen fundraising for needy adults, the limited exposure they have had to people needing help to access places and services. I couldn’t work out where our family fitted in for a long time.

It took me a long time to realise that Ben’s challenges weren’t only ours to face. They felt individual and specific, but they actually fit into a collective experience of being a disabled person. A lot of Ben’s difficulties are about how he is treated rather than how his body works. The power of disabled adults will become his power as he grows. I am more observant of whose voices are being centred. 

As Ben’s mother I will always have a different experience of the world to him. I can be his carer, advocate and ally but I am (currently) not disabled. Yet I am his mother and that is itself a particular and specific role, for me as an individual and as a collective. I think talking about my experience is valid and there should be space to do it, as long as it is done carefully. The challenge of talking about mothering while not oversharing is not unique to me – it’s true for all mothers, of all children. The reason we share is because we are trying to work out what we are doing and who we are. I want to attempt to articulate what I have learnt because I’d like to help reduce the number of people who, like me, had no idea. I hope that is what I have done in my book, which is published in seven weeks (argh!), and I am excited and terrified for people to read it.