Three books on disability, family and rights

In this post I’m going to briefly review three books that look at family life and disability. I’ve grouped these three together because disability affects individuals but also determine and impact life in a family. It’s easy to feel sometimes that the voices of those who live with people with a disabilty become segregated from disabled people themsleves, meaning that life in all its richness isn’t told in the round but as a series of separate stories. 

I feel that our life as a family has been changed and enriched by all our family members – Great Uncle Henri, a French war veteran who was blinded in the First World War and ran an association of blind former soldiers, another French family member who had a spinal condition and my lovely great aunt Cecile, who had schizophrenia. Nearer to home my granddad was deaf, and in more recent generations family members are autistic. I don’t want to romanticise our experience of disability though – it’s not easy, dealing with stigma, poor social support and the impact of particular conditions on family life. One that has shaped my immediate family life most, depression, remains particularly poorly understood.

So I”ve been itching to look at these three books that all take a clear sighted look at disability, family life and the gaze of outside, which can other and stigmatise, making life harder than it needs to be.

Jan Grue’s memoir, I Live a Life Like Yours (Pushkin Press, 2021) is a beautifullly written memoir of Grue’s life as a journey through disability, translated by Becky Crook from the Norwegian. Grue, a Professor of Qualitative Research at the University of Oslo, draws on art, fiction and the lives of other disabled pioneers, such as the writer Mark O’Brien, to explore themes including family life, the body and relationships. It is a thoughtful meditation on how to be fully human with a disability when the external gaze is clinical or stigmatising – and how relationships with others, including his wife and son, restore a sense of subjectivity, rather than being objectified – and even judged. Grue makes the point that his life is similar to others in his family, but is experienced as different in a way that is often uncomfortable.

“I follow a timeline that others might have followed. I live in the same city where I grew up. I am an academic, a child of academics. I live a life like theirs. I am married and have a child with Ida, who is a woman who writers…These are the threads that hold my life together. This is the fabric.”

But as Grue says, when people meet him who knew him as a child, there is a sense of surprise, because he has “surpassed expectations”, prognoses. There is another sense too, that to live a life like everyone else’s, there is struggle – against the gaze, against the threat of institutionalisation, so that Grue and other disabled people are accepted, just as they are in a world of barriers where everything must be planned. “It is hard to be human beneath the institutional gaze.” Grue’s exploration of O’Brien’s own exploration of the troubled landscape of sex surrogacy and competing rights is particularly sensitive. 

This is an outstanding book in which Grue’s experience becomes a fulcrum around which he explores a disabled life lived in connection with other people, both those who objectify and those who support and are supported by him being in the world, navigating it and peeling away the shame and stigma that still cling to disability like a burr on wool.

In The Cracks that Let the Light In, by Jessica Moxham (Octopus, 2021), the writer explores the subtitle  – What I learned from my Disabled Son. Moxham explores how she and her husband, James, have raised their three children whilst supporting their eldest child, Ben, who uses a wheelchair and needs assistance to communicate. Life in a family with a disabled child is one where you take on the state in all its guises. Whether you like it or not you become an advocate, a campaigner for equal rights, and even pushing to raise a family becomes a political act. Life isn’t what you imagine, and Moxham feels her way through some of the thoughts that are often linked with life with a disabled child – that there is grief, even though your child is alive, for instance. Like Rue, she explores the idea that the young disabled child’s body should be put through exercises to change it, when she sees how her second son rolls and moves. “No matter how much time I had spent helping Ben roll or sit, he would not have been able to overcome the essentiall wobbliness and involuntary movement of his muscles. I am relieved rather than sad…Ben’s impairments cannot be taken away.” One vivid passage explores the fact that Ben’s disability means that he dribbles. A child at her son’s nursery calls it disgusting. There were surgical options and other interventions such as Botox. “All of these would involve recovery periods, side effects, disruption. We decided we wouldn’t intervene, but had he noticed the girl saying he was disgusting? I didn’t know whether we should reduce his dribbling to make him more acceptable to strangers…My aim is for our children to grow up thinking they are enough…I don’t want him to feel like he takes up more space than he is worth, or to force him to be a certain way because it’s perceived as more palatable.”

Moxham’s clear sense that some bodies work differently and that’s OK is nuanced, but challenging in a good way. She says she has got bolder over the years – but is also just getting on with life. “Sometimes I’m considering the careful use of particular words and tone, sometimes I’m policing other people’s language and sometimes I’m just shouting “Bum!” at my kids. 

There is such a clear sense of family life going on, accepting each child’s idiosyncrasies. “We have pitched our tents on the undulating landscape of uncertainty and we’re making the most of it…we are all doing our best.”

Lastly, I wanted to mention Somebody Up There Likes Me: Living with the Threat of Huntington’s Disease (Amazon, 2021), written by Melanie Pearson about her family’s experience of being affected by the condition. Her mother and brother both had the condition, and she supported her brother through the condition. Pearson’s book is an exploration of how ignorant so many medical professionals are, and how poor the support is for those with the condition. Despite the hardship and bereavement, Pearson is very clear that this isn’t a misery memoir, but more of a road map through a condition that is hugely misunderstood, leaving families to support their members with it and the difficulty of choosing whether or not to have a test for it, knowing what your future might be.