Kokila Shah has lived with polio ever since she was two years old. It is not so much the disability that bothers her, but the lack of amenities in the city. Says she, I feel that the city planners are most insensitive to the needs of the disabled. If I want to go out and buy a dress for my granddaughter, I have to sit in the rickshaw and wait for the shopkeeper to bring the samples out to me. This is because there isn’t a single footpath in the city that has ramps or banisters that a person with disability can access.
People are very helpful, I know, but what really helps us people with disability is the feeling that we are not dependant on anyone. But without the help of the Pune Municipal Corporation, we cannot do it. Why can’t the PMC make it compulsory for builders, hospital’s and to the public places to have ramps, banisters and other such things that make it accessible to persons with disability? Why do we have to depend on people’s generosity?
I don’t understand why we cannot have a special bus service which can be used by people in wheelchairs? Why doesn’t anyone think about us? I have tried talking to ward officers and so on, but I think that we can achieve all this only if we put up a united front. I feel it is very important for people like me to come together and campaign for our rights.
Late Chhaya Mehta
This was the time she started experiencing acute pain in both her legs. Says Mehta, “After this I started getting sick. In between I was able to finish my graduation in Home Science from SNDT College, Mumbai and even hold the post of a lecturer. But I had to stop because of my arthritis and a skin problem on my right leg which did not seem to disappear. This was when my brother took me to the All India Institute of Medical Sciences (AIIMS), Delhi. Sometime during my treatment, certain injections which were given to me led to the formation of gangrene in both my legs. The team of 16 doctors attending my case decided to amputate both my legs. I could not be given heavy anesthesia because of my condition and I could feel doctors operating on me”.
For Mehta the trauma was really painful. Says she, “I kept wanting to tell them to stop cutting my legs but I couldn’t find my voice”. Then, there were other complications which developed because of the pain killers she took despite the doctors advice. “Their side effects led to high and low blood pressure, failing kidneys, a collapsed left lung, cataract in both the eyes, diabetes, fragile bones and lesser blood supply due to contracting veins. This only goes to show that one should take drugs only on the doctor’s advice”, says Mehta.
In due course, Mehta also tried to get artificial limbs fitted. But she encountered another disappointment. Says she, “My body could not take the burden, which came as a big shock to me. It meant a lot for me to be able to stand on my own feet. But I can manage rather well now, with the aid of a wheelchair. Since I have always been good at handicrafts, I have taken this up as a profession. I get a lot of orders from friends and neighbors. I also managed to get a telephone booth for rehabilitation from Late Vijay Merchant”.
Late Chhaya Mehta’s Achievements
Inspirational Poems for the Disabled
When Narendranath Dubey had a rail accident at 21, he did not expect to become a paraplegic. Says he, “Initially all I felt was the amputation. The doctors assumed that I would know that I was about to become a paraplegic, but I didn’t. Even when they told me it took time for it to sink in. It was only when I moved my leg and it would not move, that I realized what had happened”.
It may come as a surprise to most, but I did not feel depressed or angry or any such thing. Yes, I did feel the loss, I did feel the loss of not being able to run around, of being bound to a wheelchair. But I got over that phase pretty soon.
I feel in fact it was my mother who was devastated. My parents were shattered and it was I who told them that I would soon become ambulatory, that I would be able to live a fairly normal life.
In the beginning, it was hard. You lose control over your bowel and bladder, you find it hard to get used to the wheelchair, but I think it all depends on how you deal with it. I have noticed that disabled persons who are outgoing do better. It’s actually simple. If I need to go to a store to buy a book and cannot climb the footpath with my wheelchair, then I ask a passerby to help me. People are very happy to help someone in need, that makes them feel useful and I get my work done.
If I were to sit in my chair and mope about my condition and not reach out to people, then I’d feel more miserable about being in a wheelchair. I feel people with disabilities should get rid of this hesitation and ask for help. There’s nothing wrong in it. As far I am concerned, I don’t feel my disability till people come ask me something.
Dubey needs to know where he can procure hand operated gadgets for automobiles in India.
“I lost the use of my legs in an accident. It has been my experience that doctors treat a patient medically and then don’t know what to do with him. Many a time I have doctors sending me their patients asking me to help them out with my experiences. Just the other day there was this lady who was bound to a wheelchair and was feeling very low. I took her to meet a female friend of mine who is also wheelchair bound. By sharing their feelings, they both felt at ease with their disability and are now well settled. I feel that even basic information like how to avoid bedsores, how to protect your feet, how to be wary of witch doctors are not taught in hospitals. I have learnt them along the way”.
Dr. H. S. Dhaliwal
Dr. H. S. DhaliwalDr. H. Dhaliwal, a young doctor at the threshold of his career, became a paraplegic due to an unfortunate accident. Dr. Dhaliwal along with aarogya has started a support group with the objective of creating a platform to discuss and find solutions for the needs of the paraplegics, whereby they can lead a better life.
Dr. H. S. Dhaliwal
C/o Col. S. S. Dhaliwal
12/1, Stavely Road,
Behind Wanawadi Post Office,
Camp, Pune, Maharashtra, India.
My View on “What I feel it is like to live with polio. How this has affected my life and how I deal with it”. Hello, I am Sandeep Kharat aged 35. I am married and have a 2 year old son. I am a Science Graduate from Wilson College. I work as DTP Operator cum Office Assistant in Cipla Cancer Palliative Care Centre, Warje, Pune.
I was affected by polio at an early age of 1 yr. just after I was given oral dose of polio in the morning and in the evening I was showing signs of polio. Both of my legs are affected by polio and I use crutches to walk.
As a child and an adult I have learned to live with the disability and to find ways to overcome whatever problems that come. I am by nature a lively person and I think this is what counts. If one is lively he will be happy most of the time. It’s mental attitude that helps to overcome any disability. There can be people willing to help but only if you are ready. As a child affected with polio, though most of my childhood memories are cheerful ones I had my dark moments due to this disability. I am very fond of playing games and unfortunately I could not play the games.
Therefore, I used to spend lot of time. Seeing, the children play games and wishing I could also play. A common problem that people with disability face is the teasing they receive mainly from children. One has to learn to overlook it. Saddest part is that even when the children are making fun of disable children and sometimes even adults, the parents of these children, if seeing, hardly make any effort to educate them. This is particularly the case with uneducated people. Of course this is not true only for the children, many a times even adults gawk at you or worse frown. Another problem I faced as a child was the transportation. Coming from a middle class family my mode of transport was Bus. In those days there was no Janata Bus, no reserved seats for people with disability. In the school I had to be very careful at the time when the school was beginning and getting over as children tend to be in a hurry to come and go and would push anyone in their way.
My personal experience has shown me that parents have a major role to play in the lives of disabled children at least in the initial stages. Parents should understand that their child has some limitations and they must contribute towards making the child overcome it. The main key that all the efforts should be in the direction of making the child independent, as sooner or later the child will have to face the World on his own. Many parents try to keep such a child at home most of the time which denies him an opportunity to mix with the other children, enjoy, learn the ways of society. Situation is really pathetic in many rural areas or even in some educated urban families where such children are either denied any education or in some cases even necessary accessories such as crutches, wheelchairs etc. Not only such child remains uneducated but mostly immobile and mobility is life. Recently my vehicle was in garage for over a week and i commuted by 6 seater rickshaws. One of the rickshaw driver asked me how much I am educated and where I am working, that is if I am working. Then he told me that he had a younger brother who had polio and could not walk at all. They did not take the child to the school. He was not given even a wheelchair thinking that they would manage him at home only. That child became so frustrated being lonely and unable to do anything about it, no one to play or talk to except brothers and sisters, totally dependent. He did not see the outside World much. Finally when he turned 16–17, totally frustrated committed suicide at home. There is a family in my area which is well to do and have a boy who cannot walk. They too have not provided him with even a wheelchair. They take him to school in their vehicle. But how long can they lift him and put in vehicle or carry in the classroom. The boy must be able to manage for himself for he will gain weight as he grows, his brothers and sisters will marry and lead their own lives. Parents will not be in a position to help him once they are past their youth. Not many families think this way.
It is responsibility of parents to think of the future of their disabled child. If they need help or guidance they can approach the NGO’s working for the disabled. Parents should remember that only if their disabled child becomes independent and manages most of the daily chores on his own that they can die peacefully knowing that he will not only survive but will do well.
What I expect from people is to look at the people with disability like any other normal person. Most of the people with disability who come on the road can manage most of the things for themselves, otherwise they would not have ventured on to the road. All they need is an occasional help. This particularly is directed towards employers.These people either have aversion to the people with disability or doubt their capacity to work. I have an experience of this at few places. One lady working for a well known placement agency located at Shivajinagar ST Bus Terminal blatantly told me that if she had been around she would not have enrolled me. According to her many employers do not hire people with disability and went on to tell me that they judge by physical appearance. How is it that then I could get a jobs on my own and that working well without anybody’s help. There are many people with disability serving in offices, factories.
I would like the Govt. to see that whatever posts reserved for people with disability are filled. I do not know if there is a scheme for free education for people with disability. I would like Govt. to start free education scheme for disabled children and even for adults (if they are unemployed). This is mainly due to the fact that it is very difficult for a middle class family to spend on education of such child as they have to spend more on transportation. Also I would like the Govt. to start rehabilitation centres where help is given to such people. Crutches, wheelchairs etc. equipments are the constant companions of the people with disability. They have to spend on these throughout their lives and hence should be easily available at subsidized rates. These accessories are very costly and often substandard as well in the private shops. Your idea of getting a charitable organization to put railings is a very practical idea. I have often come across this problem. It is very dangerous to come down the staircase without railing. Another problem added now days is, glossy and ceramic tiles. Crutches slip of them, due to which I have even changed my bank. But everywhere people are using these tiles. They are so dangerous to walk on and when wet an open invitation for a free fall.
I would like to see support groups coming in every city and even in rural areas. Meeting of disable people should be arranged to give them platform to present the difficulties they face in life. It would be very humanitarian if some members of this group / volunteers visit those people who are disabled to such an extent that venturing out is impossible for them. It is great to have somebody apart from family member to talk to. Here where I work we have this system by which our Medical Social Worker and volunteers visit the terminally ill cancer patients at their homes. This would also help in assessing the financial position of the family and giving guidance to them as to where they can get help.
As for my adjustment towards life, I live like any able bodied person. I can do most of my work myself. I can walk at least 1 km and hence most of the marketing I do on my own. I have a scooter with side car attached for conveyance and for carrying material from market to home. But I can and do travel by public transport system. Most of the time I do not feel I am disabled except when someone reminds or when I see people playing. I think if not for this disability I definitely have become a good sportsman. I do take physical exercises to keep me fit and to retain my movements.
Article on disability by Win V. Pathak
“I was born on April 3, 1964 with Spina bifida occulta. But this was but only detected after many years. As a child I started to walk at nine months. The funny thing was that I started to walk at a early age but I kept on falling with regular frequency which was attributed to my eagerness to walk without being really ready. That this fact would be the cause of some muscular disorder which I would eventually suffer from was never even thought by anybody”.
I had no obvious weakness or difficulty walking, and I had no trouble getting up. As I grew taller, this problem was forgotten. As I had stopped falling easily and the issue was closed. But the problem continued to manifest itself – I could not squat easily and then get up from that position. My ankles were also weak and hence, I could not take to sports which involved fast responses. Doctors and friends alike thought that it was a case of plain laziness and nothing much could be done about it. So I took to activities which were more stamina based like trekking, rock climbing and long distance running. In spite of these difficulties I jumped into all such activities which I was comfortable. I was a Boy Scout and a good shot putter. In addition to this theatre interested me a lot.
I was skinny for most of my life till about 12 years and then suddenly I put on weight and muscles and yes, I was taller. Life was progressing in a perpetual high teenage, girls and parties. But soon problems started cropping up. When I was about 18, I found one day, that I could not jump.
This, I reasoned was due to my weight (180pounds) so I made a conscious effort to reduce, but the problem would just not go away. In fact it aggravated and I would easily tire after a game of table tennis or badminton. When I was appearing for my B.Sc (Physics) final examinations I came down with “Supposedly” viral fever which was 105oF for 3–4 days and then it was gone. This reduced my weight by 20 pounds in 7 days and I started to feel distinctly weak in my legs particularly the calf muscles. This was the point when the downward journey really started.
I was diagnosed for Limb–Girdle Muscular Dystrophies (LGMD) at the age 20. Here, I must also thank my mother (who actually is an angel incognito. She has made me look ahead with some confidence) Since she was aware that she would one day see her son in a wheelchair, she looked the other way when I went out for all night parties, had affairs and started drinking. Since I knew the end result, I plunged headlong to enjoy what life had to offer. To get variety of life I changed jobs at a very fast intervals and some of my friends were shocked with this, (they did not know of my LGMD). I have been a stock brokers trading floor clerk, insurance agent, investment analyst and portfolio manager, EDP incharge, company director and even a marketing and collection. In charge for a poultry feed manufacturer. Currently my physical condition has forced me to resign from my last job where I was manager operations in a leading stock broking house in Pune. I am currently involved with internet services through my own company “Plus Systems”.