In Jo's Blog

Sometimes, I imagine how a famous person 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 President Obama, Julia Roberts, Bill Gates.

I’m going to help you picture it. To bathe Moy Moy, I help her into a wheelchair (we are a four-wheelchair family – the one area where I could give any of these folks a run for their money) 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, golden brown skin, thick, black, shining hair. But there is also a tube emerging from her flat, muscular tummy and I have to wash that carefully and 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. Being the President of the United States, in spite of 24 hour Secret Service coverage, doesn’t protect you or your family; being Julia Roberts, able to sign million dollar movie deals, can’t buy you a ticket out of disability if disability is in your destiny.

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. President Obama, Julia Roberts and Bill Gates share in the human condition in exactly the same ways that Moy Moy and I do. Exactly. 

Young woman talking to Moy in her stroller; child on the side looking on and smiling

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 they are no different than me.

And simply by that act of solidarity, she calls me – and everyone else – out of our individual lives – Ambition! Achievement! Amazing feats! – to the life of community, where small steps are celebrated and applauded for the great leaps they are.

A small boy practices his walking, while an older boy smiles with delight and a teenage cool cat helps him take the next step

It is no small thing, this leveling 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 – President Obama, Julia Roberts, Bill Gates and me – are all in the same small boat.

Three children chatting together

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.

Showing 5 comments
  • Entropy

    This is our Gift of an Ordinary Day !!

    I may not have gone where I intended to go, but I think I have ended up where I needed to be.

  • Entropy

    This FaceBook Like button on this blog is entirely out of place, irreverent and meaningless ..

  • annie koshi

    You know what I think Jo, I wonder if you would have written as beautifully and with as much insight if Moy Moy had not opened your eyes and understandings. Her beautiful and continued gift to all of us is that she speaks through you in words and images that only she possesses and only she experiences. And that is why when Obama speaks we dont listen but when you do it opens our eyes and hearts.
    Im sharing this with the staff on our yahoo page. It is as if you give a continued talk and I’m sure you will open their ears and they will be listening before they see you in person.
    Thank you Moy Moy.

  • Nandita de Souza

    I want to write something that will be worthy of this post and express how deeply it touched me. But, the words that come to mind sound trite and inadequate. So, I’ll only say THANK YOU for filling my heart and uplifting my spirit.

  • Lakshmi Surendran

    Jo, you have written it from your heart! Touched! Even so, because I think the same way with my grandson Dhan. He is an 8 year old. Having CP. Seizures. Cannot walk, talk or see properly. Has to be fed, bathed, diapered……… And abandoned by his father!

Leave a Reply to annie koshi Cancel reply