Disability is not something to be ashamed of
Greta Thunberg, the Swedish teenage climate change activist has, this week, been taking the United Nations and the United States by storm. For over a year, she has been urging politicians worldwide to accept the predictions of scientists regarding climate change.
It is most interesting to learn that just five years ago, she became depressed and lethargic, stopped talking and eating, and was eventually diagnosed with Asperger autism syndrome, obsessive–compulsive disorder (OCD), and selective mutism.
While acknowledging that her diagnosis “has limited me before,” she does not view her autism as an illness and has instead called it her “superpower” and she refers to the selective mutism aspect of her condition as her speaking “only speaks when necessary.”
That Greta has become such a powerful voice in the climate change debate is, no doubt, due to the very strong support and encouragement she has received from her parents.
An issue close to heart
My earliest childhood memory in the late 1940s is of my elder brother sitting, it seemed to me, permanently, in a push-chair and sometimes in a wheelchair. It was something that as a young child I accepted, not knowing it was unusual. My brother, who died in 1999 at the age of 55, had Down syndrome, learned to walk when he was six years old, and was not able to speak.
I should emphasize, however, that he had a definite character and personality, and at the residential home in which he lived, he was a useful, helpful, and cheerful member of society.
Our elder son, Neil, also has a severe learning disability and, when he was diagnosed as such within a year of being born in New Delhi in 1975, we were told by medical specialists there, as well as in the UK, that he was unlikely to ever talk, and was expected to walk by the age of about five or six years.
Initially he was diagnosed as having Down syndrome, but that was subsequently found to be the wrong diagnosis. My wife and I were obviously depressed and completely at our wit’s end, but that did not stop us from searching out all possibilities of finding a cure.
We tried all types of Indian medicine and my wife began to spend a considerable amount of time deep in prayer. This brought her inner peace which helped her deal with the situation better.
To encourage Neil to speak, I would sing nursery rhymes and I would sometimes miss out the rhyming word at the end of a line. For example:
“Appley Dappley, a little brown mouse,
Went to the cupboard in somebody’s -----
In somebody’s cupboard there was everything nice,
Cake, cheese, jam, biscuits, all charming for -----”
Eventually, one day, to our great joy, he filled in the gaps with “house” and “mice.”
At the same time, we provided every type of stimulus to our son and he began to walk at the age of about two years and now, aged 44, can hold a reasonably good conversation, though he cannot live independently.
We always tried to tell Neil, and his younger brother Rohin, who is a cardiologist, that there is no part of the English vocabulary that includes the words “I can’t do it.” Neil has become, over the years, a happy, loving member of his family and the residential community that he is part of, and when he feels in a good mood, he can be extremely helpful to the extent of helping in the kitchen, preparing the table for a meal, and even washing the car.
If he is not stimulated to be involved in such activities, he will just sit in front of the television and watch the many programs available on television covering sports.
For someone with a severe learning disability, Neil has always had an incredible memory and a remarkably good sense of direction. Also, because he is on regular medicine because he suffers from epilepsy, whenever someone else is ill, it is Neil who will remind that person to take his or her medicine on time.
From these observations, it can be seen that Neil is able to participate fully in life even though he will not ever be able to live independently. He has all the emotions that you or I have, and an enormous sense of humour. He also has the capacity to laugh at himself.
A different story in Bangladesh
Neil’s situation is very different from that which faces a child with a disability in Bangladesh, particularly, if that child lives in the rural area. However, I have made these few comments and observations, from my personal experiences, with the hope that it might encourage others to feel less lost and hopeless when they know their child has some form of disability.
Parents of children with disabilities of all kinds in Bangladesh must never feel ashamed or embarrassed that they have such a child. As parents, you must love all of your children equally and have as much fun with them as possible.
When our Neil was young, I used to play the fool a lot of the time, so parents in Bangladesh must unwind and become a little bit crazy too. Just getting Neil to laugh was like giving him a good medicine as he would be happy and he would eat well and complete all his daily activities in time. This made his parents happy too.
And so, parents in Bangladesh should see Greta and Neil as fine, though different, examples and they should unwind, relax, “let their hair down” and have lots of fun with their children. The happiness will positively affect the whole family and, hopefully, the wider community.
Julian Francis has many friends in Bangladesh who have different kinds of severe disabilities, and says that they have immeasurably enriched his life over many years.