A few years ago I ran into a classmate from medical school who is now a gastroenterologist. When she heard I work with children with disabilities, she said: “Gosh, that is so brave of you. How do you do something that’s so depressing?”
I was a bit nonplussed and not sure how to respond. It had never struck me that I needed to explain why I find my work with children with disabilities positive and fun.
In conversations with people about disability I have noticed that their attitudes are shaped by whether they actually know a person with disability. I mean truly know, not just say, “There’s this guy in a wheelchair I have seen in our building sometimes.” I am not talking about getting to know a person beyond their disability either, because disability shapes who they are. I am talking about knowing the individual. It is in that personal knowing that we can overcome our generalisations and stereotypes.
Sometimes, I am reminded of a cartoon which shows a person without a disability asking someone in a wheelchair, “So what do you prefer to be called – handicapped, disabled or physically challenged?” The person in the wheelchair says, “Joe would be fine.”
The first person with disability I knew was my father’s brother, Sambu Chitappa. I now know that he had an intellectual disability, but back when I was a child he was an integral part of my long summer holidays in Salem. He was always willing to play Snakes and Ladders, make helpful suggestions about my sister’s future career (“Definitely the circus,” he said) and was happy to accompany us to the movies despite having seen the film several times already.
Candy loot from relatives was equally divided among the cousins and Sambu Chittapa. In the small town that was Salem then, everyone made sure he was part of the community. He was our representative for all marriages and sacred thread ceremonies, bringing back reports of the feast and the family.
When I see how most of my patients’ families struggle with getting their child to become part of their community, I wonder if the simpler lives we once led allowed people to get to know one another better, and whether that was the key to creating inclusive societies.
A certain shyness
Some people don’t require you to make an effort to get to know them. My friend Shanoor was one of them. She had quadriplegia from a riding accident. When I first got to know her, we discovered shared interests in books, music, theatre and children. Of course, we talked about disability too.
Shanoor died a few months ago and my memory of her is of a person who filled the room when she was in it. The force of her personality never left you in doubt about her opinions on an issue.
But there are some who need time and warmth for you to get to know them. One of my patients has a condition that makes it hard for others to understand what he says. Last time he visited, I asked him what he does in his free time. He used a combination of gestures, drawing, Google and YouTube to tell me why he loves listening to Japanese music. Our visit lasted a few minutes longer than usual but if we hadn’t had that time together I would never have heard this Mumbai boy confess shyly that his dream is to be a singer and sing Japanese songs one day.
Trying to talk to someone who is struggling to communicate can be intimidating if you don’t know what to do. The first time I met a young man with cerebral palsy whose speech was hard to understand, I panicked. What if I offended him by not understanding him? Perhaps it was better not to talk at all. Then I noticed that his friend who was with him seemed to understand him well. I checked with the friend if it would be okay for me to ask her when I did not understand something he said – of course it would be, she said. The three of us managed a lively discussion with some good-natured teasing and laughter when I misunderstood what he was saying. Had I not overcome that initial barrier, I might never have got to know him, or more importantly, attempted to speak to someone like him again.
Curiosity of the young
Young children are naturally curious about the world around them. Their questions are endless, from “Why is the sky blue?” to “Where do babies come from?”. Disability is just one more thing they want to know about. They have no problem with asking questions like “Why is that big girl in a pram?” or “Why can’t that boy talk?” and “Why does he look different?”. In response, parents will often shush them and tell them not to look or ask rude questions. But questions are just questions – if they do not ask about things they don’t know, children will never learn. Most parents would love for children to come up to their child and be curious and open to learn about their disability, rather than ignore the child completely.
It is hard to generalise about any group of children but one thing that stands out for me is how self-aware children with disabilities are compared to children without a disability. Dr Scott Wright, a professor at Johns Hopkins University, who also happens to have a disability, talks about how being aware of his strengths and challenges at an early age has helped him become the reflective and empathetic leader he is today. He encourages his trainees to reflect on their own challenges and supports them in working on a professional development plan to address them. Author Collin Diedrich, in a recent article in Science, makes a case for why having a learning disability has equipped him for a career in research.
When you have a learning disability you learn to ask a lot of questions to understand things and you are familiar with failure – both important qualities of a good scientist.
Most children with disability have moments when they are sad, angry or frustrated by the assumptions that the world makes about them, and the way it leaves them out. The right to be in school does not ensure that every child with a disability is in school (38% of them are not, according to a World Bank report). Being in school does not mean the child will have friends or be included in games, yet far from turning bitter, many children with disability tell me they want to help others. They are able to recall clearly the individuals who have helped them on their journey and want to do the same for other children with disabilities.
My patient Sanket has muscular dystrophy and moves around in a wheelchair. Attending school was a struggle – his parents had to carry him up three flights of stairs every day and it was hard to get a scribe to write his exams. But he is now in college and is clear that his future career will be in mental health. He wants to be a child therapist, like Jill, his therapist, who is an important part of his life.
I recall times when my patients have reached out to me with concern and care. Children who have experienced the anxiety and fatigue of juggling many difficult things can recognise the symptoms in others. One hectic day I greeted my 12-year-old patient with attention deficit hyperactivity disorder somewhat distractedly with “How are you doing?” He gave me a once over and said gently, “I’m okay, but how are you?” We did a little check in on how our respective days had been and quietly, my day became lighter.
Vibha Krishnamurthy is a developmental paediatrician and the founder of Ummeed, a non-profit organisation in Mumbai for children with disabilities.