Persons with disability can live with dignity if society is structured keeping his/her functioning in mind
The tagline “Disability is only a state of mind” of a recent article, which featured an inspiring story of an Indian who had achieved success in spite of his physical disability, evoked a visceral reaction in me. With World Disability Day arriving on December 3, and because we all are looking for a diversion from our daily routine during Covid social distancing, I decided to sort out my feelings in writing.
The thinking behind the tagline presumably goes as follows: All of us have tasks, be they mental or physical, that we are insufficiently capable of performing. An expert pianist could be terrible at mathematics, and a computer scientist might not be an inspirational orator. We learn to live with our shortcomings but build our lives around our strengths. How is that any different for those with disabilities? Could they also not let their disability dominate them, and channel their strengths to perform wonders?
The view is well-meaning, intended to inspire persons with disabilities (PWDs) to strive for their best. However, the onus is not entirely on them. We must not forget the profound role that the society plays in shaping their state of mind and providing them with the right tools, environment and opportunities to flourish.
I am not a social scientist; my remarks below are based on my real life experiences from living with a disability in two countries, India and the United States. I joined the community of disabled as a 12- year-old child when, during a summer break with my mother’s family in Kolkata, an automobile accident left me with head injury, broken bones and ruptured arteries. The doctors managed to save me but my left foot had to be amputated. Back home in my rural village Sambhar in Rajasthan, I began the process of coming to terms with my new life as an amputee on crutches.
Physical challenges, often exacerbated by lack of proper medical resources, are only one factor adding to the daily struggles of PWDs. Social attitudes are another. Society can be unsympathetic, and even antagonistic, to the disabled, considering them objects of scorn and ridicule. The social stigma of disability often brings a deep sense of shame and guilt that robs the disabled of any feeling of self-worth and self-esteem. A combination of physical limitations and social exclusion condemns most PWDs in India to lives in the cruel, forgotten margins of the society.
I was one of the incredibly lucky ones. Unlike in the Western world, amputees in India did not have access to prosthetic limbs in those days. However, just about at that time, a craftsman named Ram Chandra Sharma and an orthopedic surgeon Dr. P K Sethi invented, in the nearby city of Jaipur, a new technology for manufacturing a basic prosthesis locally. This altered the course of my life by empowering me to continue my education and step out into the real world. (It turns out that I was among the first recipients of what would later become famous as The Jaipur Foot and rehabilitate several hundred thousand amputees in India and other third world countries around the world.)
Fast forwarding nine years, I found myself in the United States. While it was my passion for physics that brought me here, I soon realised that I had arrived in a land that can only be described as a heaven on earth for the disabled.
What can be
An indelible memory from my initial days in the US is that of a shock when I saw a student amputee in shorts, with her below-knee prosthesis in full display. Making no attempt to hide her disability, she appeared full of confidence, no more self-conscious than someone wearing glasses, and no one seemed to think any less of her for her disability. With time, the shock factor of such sights subsided. Seeing people with disabilities leading ordinary lives and employed in various mainstream professions is all too commonplace in the US and some other Western countries.
Coming from India, it was hard to believe that there exist societies where there is no shame in having a physical disability, and where a disabled person can lead a life of dignity and honor, be a purposeful citizen of the society, and rise to the highest levels in all walks of life, including politics (US President F D Roosevelt) and science (Stephen Hawking). The disabled are not shut out of the proverbial American Dream.
What makes the magic happen? The answer is simple: The disabled are seen and heard, not excluded, and all aspects of the society are structured keeping their functioning in mind. There is no shortcut, however. It takes strong laws, resources and a long-term commitment.
Most important is education. My wife, who teaches in the local elementary school, can go on and on about the level of support, in terms of human and financial resources, set aside to help keep disabled children in the education stream. Teachers are required by law to prepare a detailed educational plan for each disabled child, with parental input. Disabled children are intermixed with regular classes to the extent allowed by their disability, but also receive specialised education where needed. A full time nurse and a paraprofessional accompany a child with extreme disability. Professional therapists and counselors deal with various issues and strive to ensure that the disabled children achieve their full potential. (Even the thought of psychological counseling for trauma survivors had never occurred to me until a friend in Europe asked me if I had received psychotherapy after my accident.)
Accommodations are made in lectures and examinations for students with various kinds of physical and learning disabilities. This continues through college, which often has a Student Disability Resource Office to address disability related issues. I typically have a couple of PWDs in my undergraduate class of roughly forty students, who will all go on to have regular lives.
Others are also taught, from a very early age, to treat the disabled with the respect owed to any fellow human being. A typical American would never even think of mocking or looking down on a PWD because of his or her disability.
All of this is for naught unless the society makes it possible for the disabled to lead an independent life of dignity that comes with gainful employment. Law not only prohibits discrimination against qualified PWDs in granting employment but also requires employers to make reasonable accommodations for them. All bus and train routes, every workplace, all elevators, and all public facilities must have wheelchair accessibility by law.
Footpaths, stairs, sidewalks, and railway station platforms feature tactile paving with markings and indicators for the visually impaired. Elevators have signs in Braille. Old buildings and structures have been reconfigured to the extent possible, and all new construction must conform to strict codes to accommodate the disabled. Additionally, the government provides tax incentives to private sector companies for hiring PWDs. In many cases, for example, for someone with autism, the state pays for a job coach to accompany and train the person every day until he or she masters the required skills.
A long way to go
During my frequent visits to India over the years, I have seen signs of progress over time. I notice disabled friendly buildings, with wheelchair ramps in many offices and malls (although no tactile paving for the blind). An increasing number of movies and TV shows have sought to educate the general public about the lives of persons with physical and mental disabilities, thereby raising awareness of the issues affecting the PWDs.
Indian PWDs have also featured prominently in Paralympics and Special Olympics, which have attracted a large media following. There appears to be greater acceptance and understanding of the disabled.
However, the goal of a meaningful integration of the disabled into the society remains a distant dream. From my various visits to India, I do not recall coming across any regular employee with a visible disability, a telltale sign of strong inherent biases against the disabled in the job market. (An exception is the Jaipur Foot facility, which preferentially employs wearers of the Jaipur Foot.) A friend of mine in India could think of only one PWD in regular employment, who, ironically, had gotten the job only by carefully concealing his disability.
How the disabled are treated and assimilated offers a true glimpse into the innermost soul of a society. Social transformation will take time, but we all can try to do something about it. Next time when you come across a disabled person, please look past the disability at the person, who has dreams and hopes just like the rest. A word of acknowledgment and empathy can go far.
If you are a parent, teach your children that there is nothing sinister or evil about someone with a disability, which can befall any of us, and to treat the disabled as they would anyone else. If you are an employer, recruit PWDs for jobs that they are able to perform. The disabled are not looking for charity, pity or sympathy, but only wish to become useful members of the society and contribute in whatever way they can. If you accept them and give them a chance, they will not disappoint you.
(The author is Evan Pugh University Professor & Erwin W. Mueller Professor of Physics at Pennsylvania State University, United States. He can be reached at email@example.com)
Disclaimer: The views expressed above are the author’s own. They do not necessarily reflect the views of DH.