Sunday, April 12, 2009

Living with a Disability in India

This past December 2008, my family took a trip of a lifetime to India to attend the wedding of my daughter Kelly to my new son-in-law Sahil Merchant. It was a special and memorable family vacation for obvious reasons. Also, it was a memorable trip because of our exposure to many learning experiences with respect to Indian culture. I’ve always been fascinated by the study of other cultures and this trip offered our family a glimpse of its rich values, traditions, and mores.

I share a common career interest with Kelly about the role competitive employment plays in the lives of people with disabilities from other cultures. My daughter works as an employment consultant for Kaposia, Inc., a progressive employment provider serving businesses in the Twin Cities metropolitan area. In addition to Kelly’s role as an employment consultant, she is also Editor for One Step Ahead, Kaposia’s corporate newspaper. Kelly wrote the article below for the newspaper about an Indian woman with a disability who had attended her wedding. Shanoor Forbes is a close friend of the Merchant family and this article details her personal journey in managing a significant disability and regaining her independence after an injury by contributing her talents to India’s workforce.

Living in India with a Disability
By Kelly Merchant
Editor’s note: Last December, I met a very inspiring woman while visiting my in-laws in Mumbai, India. This woman uses a wheelchair and I immediately wondered how she got around the chaotic city of Mumbai. Seeing as how I work with people with disabilities, I had noticed the uneven terrain and total lack of wheelchair-accessibility in public and private buildings. As she shared with me the details of living with a disability in her society, I came to realize that disability is a challenge no matter where you are in the world. Her story reminds us that a successful social and working life can be achieved no matter where you live, if you have confidence, motivation and a positive attitude.

Shanoor Forbes lived a life much like many others in Mumbai, India, until one morning in the winter of 1988. Like many other days, she was riding her horse, Romanique, at the Mahalaxmi Race Course in Mumbai. That morning, however, Romanique took an unexpected fall and Forbes was thrown to the ground, leaving her paralyzed in all four limbs. At that time, there were no properly trained ambulance personnel in India, and the driver of the ambulance pulled her onto a stretcher without protecting her neck or head. The ride in the ambulance was very rough, as the roads in Mumbai are full of pot holes and the traffic moves at a snail’s pace.

Hospitals in Mumbai were not equipped, at that time, to treat someone in her condition and without a specialized unit for spinal injuries, Forbes underwent improperly performed operations. She suffered horrific nightmares where she heard the noises and felt the sensations of her body being ripped into two. She had many moments of despair where she questioned whether this new life of dependence and lack of movement was worth living. “It was like being a new-born infant – utterly helpless and at the mercy of others,” Forbes explained. The only thing that kept her going through these dark hours of shock, fear and horror was the tremendous amount of love and support she received from friends and family.

During this transitional period, most of Forbes’ loved ones said that one day she would be riding again. It was her Uncle Rubzeh who decided to do the straight talk and explain that her walking days were over and that she would never again regain her continence. He also told her she had to “face up to living in a wheelchair with the same grace and courage that she had shown in her life up until this accident.” Forbes said it was his blunt honesty that helped her finally accept her new reality.

Despite this acceptance, Forbes continued to struggle with suicidal thoughts as the reality of her paralysis and helplessness became more apparent through the everyday workings of life. She dealt with innumerable surgeries, choking fits, pressure sores, blood clots, and the humiliation of bowel and urinary accidents.

Forbes did eventually receive the rehabilitation she needed at the Humana hospital in London, and with this intense therapy she slowly gathered strength and found her old courageous self, ready to fight back for her independent life. "So what if I have no power in my body below the level of the chest? I have the brain, strong shoulders, a fiery tongue, sound eye sight, excellent hearing, knowledge, intelligence, character and culture,” Forbes said confidently.

Slowly, Forbes began adding community-based outings to her routine. With the help of physiotherapists, she began swimming again and attended picnics arranged by the hospital. She began taking trips to the countryside with her husband, going to the movies and after immense practice with using specialized equipment to feed herself, she was able to eat out at friends’ homes and restaurants, too.

Upon returning home to India, Forbes was fortunate to find that her employer, Gulf Air, was interested in working with her talents and developed accommodations for a part-time position in the reservations department. Having worked in the airline industry for the last twenty years, there was nothing she wanted to do more. “I love going to work five days per week,” says Forbes. With the help of typing gadgets attached to her hands, she is able to handle telephone sales, flight bookings and discuss flight details with clients. “I feel it is vital for people with disabilities to have employment so they can be a part of the mainstream of life’s activities and be constructive individuals in society. This enhances ones self-value and gains respect from others.”

Since the accident, Forbes has found a love for writing and spends a good deal of time corresponding with friends and relatives all over the world. “I have to lead an active social life,” she explains. “Being in touch with people is important for someone like me who is wheel-chair bound. We can so easily get isolated from communicating with others and from human touch.”

For many years following the riding accident, Forbes dreamt of herself in her old body - running and walking and standing. It wasn’t until nine years after her paralysis that her dreams began to include herself in a wheelchair. To me, this is a sign that she has come to accept her condition and has begun to feel comfortable with her new body and new life she is leading. “I do not think that the frustrations felt can ever be abated completely,” explains Forbes, “but once you can come to accept and embrace your disability, that is when life can be lived to its fullest”.

Reprinted with permission. For more information, you can contact Kelly Merchant at kmerchant@kaposia.com. For more information about Kaposia and its newspaper One Step Ahead, you can link to their website here.

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