“I realize what a radical political act it seems to be to believe that Ben isn’t the issue, the world around him is.” This line summarises Jessica Moxham’s deeply personal book, The Cracks That Let the Light In , best.
The book runs along multiple tracks — being 10-year-old Ben’s mother and being Ben’s advocate, and in the process making sense of parenting, making sense of a society that is exclusionary to needs that are not ‘normal’, and attempting to make sense of the politics around inclusion or lack of it.
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Stream of consciousness
Let’s first get out of the way the things in the books that could have been improved or included. The lengthy streams of consciousness often make for difficult reading, perhaps because of the weight of the subject and that there are so few spaces to have that conversation. That these portions are always sandwiched between something funny, something insightful, something so mundane, it immediately brings the reader back to the central theme. Yes, the care and parenting of a disabled child is a challenge, but as she puts it, “We are finding ways of pushing ourselves out into the world and making it work for Ben. It fills us with a sense of possibility.”
For those not familiar with the U.K. and the NHS there remain unanswered questions on the processes and policies that decided the care Ben would receive, and how much of it depends on the parent’s knowledge of the issue and sheer will power. Reading this: “There isn’t an option to not be politically engaged, and often angry, because Ben relies on the support that the state provides,” the immediate reaction is, tell us more. Tell us about how the state plans that support, how are the staff trained, what are the facilities available there that is not available in many other parts of the world? Would this scenario look different for a different class and type of family? We read about the 40-page document she had to fill out to get her son a particular type of care. Moxham clearly is intimidating and is not someone to be messed with when it comes to her Ben’s care, even as she describes herself as being a people-pleaser otherwise. How intimidating would the bureaucracy be for a parent who may not have the skill to handle it? But as the title says, the book is about what Moxham learnt from her son Ben, she is not particularly setting out to educate the world.
A different matter that she does a fine job of it all the same.
Indulgent brother
So onwards to all the things that are brilliant about the book. We are told of Ben’s medical issues, the hundreds of consultations he has required over the years, the 26 carers he has had in the last 10 years, the challenges of feeding and that of mobility, but the image of Ben that endures is the big brother indulgent of his younger siblings, tolerant while they distracted him from his books, amused by their childishly crass humour, and enamoured by performing arts of all kinds.
Moxham chooses to use the term disabled, because “rather than being defined by what they [activists] were told they were unable to do, they have self-defined as being disabled by the world around them not letting them participate in the way they would like.”
A good part of the book is about parenting overall, with nuggets that most parents would appreciate and go ‘exactly’ ! “The danger is in exalting some skills above others — in having a hierarchy of achievements and comparing them against each other,” she writes, as she notices the ease with which her younger children hit milestones that Ben couldn’t and how the encouragement can be offered without it becoming a comparison. Moxham’s mind voice that accompanies her recounting of events is so identifiable and uncomfortably honest.
In writing about how her younger children see Ben and his disability, she comments on the idealist acceptance of children. Be it her second child Max’s relaxed attitude to disability’ or little Molly’s casual mention that her “brudder is bisabled.” This attitude would be more common “if we came across more disabled people at school and work,” she says.
Hazy boundaries
And just like that, it hits you. In India, why aren’t we seeing more people with disabilities in public spaces? In the few parks that exist, at the beach, in schools, in malls. We don’t see them enough at train stations and bus stops. Precious few in airports. How inaccessible are these spaces? That most of the children without obvious disabilities may never meet a child with, and when they do would not know how to respond is a concern. That these children will grow up to design buildings and policies that continue the exclusion, is the real danger. What one doesn’t see or experience gains no attention or importance.
“The barriers to disabled people living full, unhindered lives are physical (inaccessible buildings) or to do with prejudiced attitudes (assuming disabled people can’t work) and discriminatory institutions,” she writes. At this point it is difficult not to compare the U.K. with India “if only we had half of that” — and immediately falling into the trap of wanting to make small allowances for the disabled, to seek inclusion in degrees. What we need is a more radical questioning and activism around ableist normalisation of our spaces.
After all, as the book highlights, “Categorization can be imprecise. I realize the boundary between non-disabled and disabled is hazier than I had thought. When do we flip from one to the other? When does the exclusion begin? Everyone is on sliding scales of skills, impairments and needs which shift and often defy categorization.”
As Ben grows older, Moxham is fairly confident that they can help him with his physical difficulties (they have “made a house in which Ben is least disabled”), but the greatest challenge would be the attitudes of other people. Like those who in the presence of Ben and his siblings would ask what was ‘wrong’ with him, assuming Ben would not understand or that it didn’t matter. Ben can communicate, not just in a way everyone immediately gets. Moxham writes, “I think that much of people’s discomfort with disability, and their inability to talk about or to disabled people in a way that isn’t rude, patronizing or dismissive, is because they don’t have the language.”
There is an index of books that Ben (quite the reader) enjoys and a list of books on disability. In reviewing one such book, Moxham writes “Like all good books, it raises themes beyond the story...” That’s precisely what hers does too.
It is only apt to end the review with questions raised in the book. “Who should teach children about things that they are not and the people they may not yet have met? Can we teach our children to react to unfamiliarity with kindness?”
The Cracks That Let the Light In: What I Learned from my Disabled Son ; Jessica Moxham, Octopus Publishing Group, ₹734 (Kindle edition).
The reviewer is a journalist and human rights advocate, focussing on labour migrants in the GCC (Gulf Cooperation Council).
