For all its hardships, living with disability can keep one connected to our essential humanity
Sometimes, I imagine how a famous person, say Julia Roberts, President Obama or Bill Gates, might handle a disability in their lives. Julia Roberts and a son with Autism. President Obama and a daughter with Cerebral Palsy. Bill Gates and a kid with Down Syndrome. I imagine their glamorous lifestyles, their meetings with others like themselves — rich, illustrious, ensconced — their elegant evenings out in fancy restaurants and at concerts and theatres in which everything goes as planned and predicted and the worst that can happen is a shattered wine glass, an audible fart, a private comment spoken too loudly in a sudden silence.
And then I imagine them in the situations I so often find myself — not the public ones, because there is no comparison between my life and theirs. No, I’m thinking about the situations at home — in the bedroom, in the kitchen, in the bathroom. Famous or not, we all have those in our homes. Famous or not, we all have to eat and sleep and shower and use the toilet. Famous or not, we all change our clothes and put on shoes.
So there I might be, bathing the beautiful, 22-year-old woman Moy Moy has become; or changing her diaper; or feeding her through her tube and dodging as she coughs mid-meal, spattering my face with Ensure and Valparin and suddenly I am thinking about the famous trio.
I’m going to help you picture it. To bathe Moy Moy, I assist her into a wheelchair (by assist I mean I use my 52 kilos to transfer her 35) and roll her into the bathroom. We designed the bathroom with her in mind — a wide door, a tiny divider to separate the bathing area from the rest — her chair can navigate it with minimal effort. I have already filled the bucket with warm water and I am about to ladle a cup of it over her body.
How do I describe this? My 22-year-old naked daughter is simply gorgeous — slim and perfectly proportioned, she has golden brown skin and thick, black, shining hair. But there is also a tube emerging from her flat, muscular tummy and I have to wash that carefully. As I do, I note her amazingly beautiful breasts and the fact that she is drooling on to that tummy. It is in this crazy barrage of contradictory images, this cognitive dissonance which is our life together, that the thought of President Obama bathing his daughter pops unbidden into my mind.
In my mind, his daughter is just like Moy Moy and he, suddenly, is just like me.
Because though I could never become him, he could, in fact, become me. Disability can happen to anyone.
And though Bill Gates is thinking globally about malaria and TB and helping to create a world where everyone has the chance to live a healthy, productive life, if one of his own children developed a disability, global thinking would suddenly become frighteningly local and circumscribed.
This is what I love about disability. For all its hardships and loneliness, it dissolves barriers between people with the ease and sweetness of profound truth.
By her insistence on my attention for the most basic aspects of life (Does her diaper need to be changed? Is it time for a meal? Will her stroller be able to navigate this particular landscape?), Moy Moy keeps me connected to everyone else in the world. In her paring down of life to its essence, she reminds me that no matter how famous others are, they are really no different than me.
And simply by that act of solidarity, she calls me, and everyone else, out of our individual lives — beyond ambition! achievement! amazing feats! — to the life of community, where small steps are celebrated and applauded for the great leaps they are.
It is no small thing, this levelling of boundaries, this reminder of our shared inheritance, our common history. Disability, paradoxically, has that power. It makes us aware of how fragile our independence really is, how urgently we need each other and how vital it is to teach our children that we are all in the same small boat.
Look at these children. They are growing up in an atmosphere of inclusion and acceptance. Their bodies, their expressions, their leaning in toward each other model what they are imbibing. They know without needing to say it that we are all the same, all members of the same flawed race, all in need of the same protections and welcomes and loving kindnesses.
A touch of disability. We all have it. We all need it.
Jo Chopra can be reached at firstname.lastname@example.org