Friday, September 15, 2006.
Imagine this: you are blind and deaf, and suspended on a high wire. Below is a surging, tumultuous ocean of hurtling cars, rushing people, a soundless cacophony of life on the move. They are invisible to you, but very often, it is you, with your tapping cane, who is invisible to them.
CAPTION: "Most people of Indian culture are embarrassed to show their disabled children public. But my parents -exceptional folks- could understand that my needs were very special." Anindya Bapin Bhattacharyya
Meet Anindya Bapin Bhattacharyya, 35, who lives out this scene day after day. He has been deaf since birth and gradually lost his sight till the world became blurred and finally went dark. To be deaf-blind is doubly challenging for it shuts down all avenues of communication.
And yet, Bhattacharyya has overcome the obstacle course of life to become a beacon for not only the physically challenged, but for anyone battered by the ups and downs of life. Today Bhattacharyya is an Adaptive Technology Instructor at the Helen Keller National Center in New York. His story is a tribute to the changes technology can affect in the life of the disabled, erasing communication barriers. Boldly he's embraced technology and run with it.
Bhattacharyya is just one of a large population of the disabled in America. According to U.S. census data, 51.2 million people have some form of disability. They represent 18 percent of the population and of them, 32.5 million have a severe disability. 2.7 million Americans use a wheelchair, while another 9.1 million use an ambulatory aid, such as a cane, crutches or walker.
Where do Indian American disabled fit into this picture? Surely there are many, but you don't see them in the public world of Indian American life. Do Indian attitudes of shame keep the disabled at home, hidden from view?
At the Helen Keller National Center, Bhattacharyya teaches those with vision and hearing losses to use computers assisted by Braille displays, screen magnification and speech output. He also evaluates and tests various computer applications, prototypes of new products and telecommunication devices, and communicates with manufacturers and designers to make them user friendly.
This world seems like another planet for a boy who grew up deaf in Telsari, a village 20 miles from Calcutta, during a time when there were few social agencies to turn to for assistance. "Most people of Indian culture are embarrassed to show their disabled children in public. But my parents - exceptional folks - could understand that my needs were very special," he writes.
Since his parents were educated, they taught him to lip-read in Bengali,and he even managed to attend a mainstream school. Life was not easy. "When I was six years old, I was sent to a school in Calcutta near my mother's family's house," he recalls. "As I was deaf, I had to sit in the front of teachers to be able to lip-read what was said. Unfortunately, I faced many difficulties at this school, because the pupils took advantage and made a mockery of my deafness."
"They would guffaw at my misunderstandings while I struggled to lip-read and comprehend what the teachers were saying. The teachers also were not aware of the situation and let it continue." This lack of communication led to rebellious behavior and he was expelled from school in six months.
Then at nine, he lost his vision due to retinal problems. He writes, "I was forced out of school as I could no longer lip-read and there were no interpreting services available. During the four year period my father searched for a school for me to resume my education. Unfortunately, all the schools for the blind in India would not accept me as they had no provisions for working with deaf students."
To travel abroad for studies was unthinkable for a boy whose father's annual salary was equivalent to the cost of two air-tickets to the United States, but Bhattacharyya managed to get a scholarship to attend the Perkins School for the Blind in Watertown, Mass., and his life transformed "from darkness to light." When he first came to the United States he only knew the English alphabet and a few words such as "I love you," "I want to eat," and "I want to go to sleep!"
"Upon arrival at Perkins and entering my dorm, the first question I was asked was whether I wanted to live alone or with my father," he recalls. "I told my father that I wanted to live by myself to force myself to learn English. From the next day on, I rolled up my sleeves to learn English, Braille, and sign language at the same time."
America dramatically changed his life of isolation. He writes, "I never imagined from a village with a large population living in poverty and illiteracy that there could also be people in similar situations as myself who existed on this earth." He went on to receive a scholarship to the University of Arkansas where he was the first totally deaf-blind student. At the university he worked, and served on the Chancellor's Committee on the Americans with Disabilities Act (ADA) to help make all facilities, including computer labs, fully accessible. In 1998 he graduated from the university with a bachelor's degree in political science.
Bhattacharyya has traveled internationally to present papers on accessibility and technology for the deaf-blind, participated in sports and made many friends with his outgoing nature. Technology, of course, comes at a price, since a new Braille display can cost $12,000; it took him three years to pay for a used one that he bought with a credit card for $3,000.
Besides technology, his constant, indispensable companion is his leader dog Dinah, who makes it possible for him to lead a normal life, hopping in and out of buses and trains. As he explains, "She guides me, we can walk quicker without running into obstacles. Dinah is great at finding elevators with open doors so that we can get in, especially in hotels where there are so many elevators. I cannot see which elevator will open and would have run back and forth among 5 or 6 elevators just to find one open. But Dinah helps me a lot in this regard."
Visit Bhattacharyya in his apartment and you find communication is not difficult at all as you and he type questions and answers on the twin keyboards of the TeleBraille at lightning speed. It's possible to carry on an animated conversation and even throw in some humor too. He doesn't consider himself disabled, just someone who has adapted to his limitations. He loves computing, woodworking, traveling, creative writing, cooking, sewing, participating in sports, and hanging out with his friends. And yes, he's in a serious relationship too.
He's even thought of going to law school to work for the disabled to get better schools and services in India and other developing countries, as well as the United States: "I didn't want to see deaf-blind people confined at home and treated as devalued members just because of their lack of participation in society. Knowing all about laws and becoming a lawyer myself, I want to be able to advocate for disabled people to obtain the civil rights and equality to which they were entitled."
He finds hearing and sighted people are often uncomfortable around disabled people and don't even attempt to connect with them: "We miss a lot in life when we fail to see the benefits of trying to recognize disabled people as being humans, too."
Ask him if there is a difference in the attitudes of Indians and mainstream Americans, and he responds, "This is a good question. Yes and no. Those who are familiar with people with disabilities are more open-minded and hold better attitudes toward people with disabilities. In India I met many good people, yet many remain ignorant about people with disabilities. The government needs to do more to improve the quality of life for everyone and enact more laws toward equal employment and educational opportunities.
CAPTION: "I always wanted to be like everybody else,but I had to work very hard at it." Padma Reichwald
Padma Reichwald knows all about these negative attitudes. Born in Jodhpur, to a physician family, at the age of four she was stricken with polio and left paralyzed from the neck down and could not walk. Gradually with physical therapy and the aid of braces, she started to take faltering steps.
"At the age of 7, I was taken to a children's orthopedic hospital in Bombay for corrective surgery," she recalls. "I was left there for almost a year alone. My parents were both not well so they could not be with me. At the age of 8, I started to walk with the help of braces and crutches. Children can be very cruel. They would make fun of me so I did not want to go school. My father arranged for tutors to come to the house to teach me. It was a very lonely time in my life. I had no friends."
Her father realized that there wouldn't be much of a future for Padma in India and since two of her brothers were already in the United States, he decided to send her there to create a self-reliant life there. She came to America in the mid-1960's for medical treatment, moving in and out of hospitals for four years. She was just 17 years old and the ordeal was only just beginning. She underwent ten surgical procedures on her spine and legs and wore a body cast for a year at a time. She says, "Once again, it was a very lonely and difficult time in my life."
She wanted to become independent as by this time both her parents had died. She went to college at State University of New York in Albany, determined to get a bachelors degree. "The campus was huge and the only way I could get around was to use the wheelchair and so I did," she remembers. "It was tough going since I did not get any formal schooling in India." After four years, she received a BS degree in Medical Technology.
CAPTION: Padma Reichwald during her childhood in India
While she was still bound to a wheel chair or a cane, it was education that set her free. She started her first job in 1970 at Montefiore Hospital in the Bronx, before going back to college to get her Masters Degree in Immunohematology. She worked at New York City Department of Health for 12 years, the last four as an assistant director to the Commissioner of Health at the Bureau of Laboratories.
While the job scene for the handicapped in India is very bleak, she encountered her share of prejudice in this country too. "It was very difficult to land that first job, but my persistence and with the help of some good people I did manage to get a job at Montefiore Hospital in the Bronx, NY, as laboratory technologist." After her MS degree, she continued to work her way up, ending her professional careers in the late 1990's as the Manager of Transfusion Service at Mt. Sinai Medical services.
Many things - such as love and marriage - which people take for granted often are major hurdles for the physically disabled. Recalls Reichwald, "I had reached a juncture in my life where I wanted to meet someone and get married, but it was very hard to meet men who would be interested in forming relationship with disabled women who walked with cane. Finally, I did meet a sensitive and good-hearted man in 1977 and we got married in 1979. We do not have children, but we are good friends and true partners."
At the time Larry Reichwald was a graduate student at Teacher's College of Columbia University, and the couple later moved to Poughkeepsie, NY.
Reichwald has had a successful career running her own radio and television shows called "Geetmala" through which she promotes language and culture for the Indian American community. Yet she has never forgotten the heartbreak of growing up with polio, and she now gives back to the community through her work with Heart and Hand for the Handicapped, supporting polio corrective surgery for youngsters in India. She says, "I want them to realize a life of self-reliance and dignity. I always wanted to be like everybody else, but I had to work very hard at it. I want to continue to do whatever I can to make a difference in the lives of young victims of polio in India."
The Americans with Disabilities Act of 1990 guarantees equal opportunity for people with disabilities in public accommodations, employment, transportation and government services, but few new immigrants know their rights. They may be struggling with family members who are limited by their disabilities from leading a meaningful life, and often parents have to take a leadership role. In many ways, they are the heroes who help get their disabled children a fighting chance in life.
CAPTION: Amar Brijmohan
Shanta Brijmohan, a real estate agent and school bus driver in upstate New York, and her husband, who is in construction, have worked ceaselessly to see that their son Amar, 26, gets the services he needs. Amar has cerebral palsy, physical handicaps and is legally blind. How did she deal with this as a new mother for the first time?
"I accepted that this is my child. He didn't ask to come into this world, I brought him into the world," she says. "I gave him all the love and care and affection that I would any other child of mine. He's the oldest. It was a challenge, but I never looked at his disability and let the disability affect my love for him or what I do for him. Any mother would do that for her child. I can't see just because someone has a disability or is not operating on a level you expect them to - to treat them differently or indifferently."
Amar was born in Manhattan at St. Vincent Hospital and went through rehab at the age of nine months. At the age of two, he was not walking and just crawling. His left leg is shorter than his right, his left arm is not fully extended, and his hand is always fisted. She says, "I taught him everything you would a child. He was persistent in trying to do things and I had to be persistent in trying to teach him."
He never did learn how to tie his shoelaces, so Brijmohan put Velcro strips on his shoes. "In this country there are a lot of opportunities, lots of ways available as opposed to just one way," she says.
CAPTION: Amar and Amrita playing
He started special education school at age two and went to preschool at NYU Medical Center and then to United Cerebral Palsy School when he was five. Later while he was studying in the Bronx, and he was in danger of falling through the cracks in the system, Brijmohan decided to take things into her hands and speak up for her son. He had been placed with children who were more disabled and his mind was not challenged enough, so he was showing it through maladaptive behavior.
"No one would listen. They were suggesting medication in spite of the fact that at home he interacted well with his cousins and siblings. So I just packed up and left from the Bronx for Duchess Country and in that school they re-evaluated him and didn't find any of the negative behavior, such as hitting and biting."
At the age of 15, he went to Arlington High School and was mainstreamed, studying regular classes with the assistance of an aide who took notes for him. Amar graduated in 2000 with a regular high school diploma. Says Brijmohan, "He has good judgment powers, he'll voice his opinions and he'll tell you his likes and dislikes. He does everything for himself. He makes his bed, he showers and I help him with his laundry. He helps unpack groceries, he helps his father around the yard and he helps me around the house. He's very handy - when he wants to be!"
Having a disabled child can be financially draining unless one knows about the benefits available for such children. Brijmohan has utilized the programs available to Amar, but fears for his future as he will never be fully independent. She says, "I'm trying to provide enough financial help for him and my daughter has promised to take care of him."
Bringing up a handicapped child can be a lonely task if you don't see others around you in your own community. Says Brijmohan: "Well I have seen that it's not as accepted in the Indian community as it is in the American community. Indians tend to hide it or deny that it happens in a large degree in our community or our culture - however it does."
Currently Amar is forging a life for himself and making the most of his abilities and resources. He works at Bard College in the dish room loading and unloading dishwashers. He also attends workshops on packaging and sealing and is paid for his work. So he's made a meaningful life for himself?
Says Brijmohan, "Yes, like a normal human being would do. It gives him a sense of independence and a chance to interact socially with others. I knew my son needed more help and more attention and more patience. There were times when I would feel my patience was running out, but every time I would feel overwhelmed my husband would help me."
She adds, from her many years of experience, "I think the best thing to do is to never treat this thing as though it's going to break or is so delicate. You have to deal with the situation the way you would with normal situations, as if he were a normal child."
A disability is, after all, the luck of the draw and can be in the cards dealt to just about anyone. Perhaps the one thing that the disabled seek from the larger population is acceptance, to be treated as equals. As Bhattacharyya asks, "How many of you have had an old car, which you lovingly kept fixing, maintaining and driving until it finally just quit running? A lot of people tend to look at deaf-blind people and say 'Just give up, your parts don't work anymore!'
"Why are cars more important than people? Just because a part of our bodies is functioning improperly does not mean we are dead. We still have our brains to help us find other ways to make adjustments. In being deaf-blind, I have lost two senses, but I still have other senses, such as taste, touch, and smell. These senses are probably a bit keener in me, because I depend on them more."
CONNECTING IN A DARK, SOUNDLESS WORLD
Anindya Bapin Bhattacharyya shows you how he does it....
Although I function well both in American Sign Language and Signed English, I prefer ASL as my primary mode of communication. I encourage folks wishing to communicate with me to give it a go with whatever level of signing skills they have. Those who don't know ASL, I communicate by having them print capital letters on my palm with their index finger. I reply back either in the same manner or by writing on paper with a pen.I know of a deaf-blind individual who takes a TeleBraille to his doctor appointments because an interpreter is not always available. The TeleBraille has what you call "face-to-face" mode that allows you to communicate with another party. This deaf-blind person said that the doctor loved communicating directly with him, and on one occasion, they both ended up talking for two hours!
Another deaf-blind person that I know also uses his TeleBraille to communicate with waiters at restaurants and co-workers at his job. When you are deaf-blind, technology is an ever-present companion. I travel with a laptop for e-mail, phone and Internet access. I use a G.P.S.-equipped Braille note-taker to get information about my surroundings. To communicate with others, I have a Screen Braille Communicator with two sides: one in Braille, which I can read; the other an L.C.D. screen with a keyboard, for someone who is sighted.
The GPS is a great tool as is the Internet, email, instant messaging. I now have access to online news so I am better informed about all the events happening around the world.
End of article.
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