(v) Locomotor disability : In the Act "locomotor disability" means disability of the bones, joints or muscles leading to substantial restriction of the movement of the limbs or any form of cerebral palsy.
Case Study Number Nine
Pallav Desai :
Pallav is a 40 year old paraplegic who now spends most of
his waking hours in a wheelchair. He lives in Delhi with
his charming wife Bina, whom he married 11 years ago, and
a young, somewhat shy daughter Gauvi. She is totally
devoted to her father who always has a pleasant smile on
his face and tells her funny stories. The Desais live in
a ground floor flat, specially adapted for Pallavs
needs. He loves to dress up, his clothes always are
carefully selected and neatly pressed, his expensive
shoes are always well polished. As silent but eloquent
reminders of his professional achievements there hang on
his drawing room walls coloured photographs of a tall and
elegant Pallav Desai, dressed in a crisp khaki uniform,
receiving awards from high ranking army officers and
After obtaining a bachelors degree in science and studying law Pallav joined the Armed Forces. Pallav was commissioned as a second lieutenant. At the age of 34, just before he could celebrate his fifth wedding anniversary, the helicopter he was piloting met with an accident during a routine army operation. The air crash left his spine fractured and he was diagnosed as paraplegic. Pallav spent several months in the army hospital for treatment. Initially he could walk a little with help but gradually Pallavs condition started to deteriorate and he was forced to use a wheelchair for mobility. He is on medication and under the supervision of army doctors and is satisfied with the treatment he has received. Pallav is acutely aware of the limitations of his physical condition and has the enormous will-power to fortify himself against the long-lasting consequences of his disability.
After the accident Pallav lost his job with the army but his repeated petitions got him a kind of sheltered employment which helped him to retain his accommodation and other facilities associated with service in the army, but Pallav could not help noticing that these could not be demanded and he was made to feel that dispensation of routine services was indeed the granting of special favours to him.
Pallav has discovered that disability acquired in later years of a life alters ones lifestyle. He started to lose his circle of friends because his daily activities, both in his professional and social life, did not overlap or coincide or cross the activities of others. The occasions for "drinks with the boys" or picnics with other families or get togethers with colleagues gradually stop. Reasons are seldom demanded or given for such exclusions. The disabled some how develop a sensitivity to understand the unsaid and learn to gracefully accept the status of an outcast. The hurt does not heal with the wounds but grows with time, particularly for the members of the family.
On the other hand, Pallav Desai regards himself in being extremely fortunate in the loving support he has received from his wife, his parents, his brother and sister-in-law and other relations. These family relationships have not changed, if anything they have become even more deep and binding. Pallav feels that disability changes relationships profoundly, at times for the better too. He recalls that there was a time when he used to take out his wife, now she takes him out and both stll have great fun. She gave up her job after his accident and devoted all her time looking after him, and never with any expectations of gratitude for him. " A good marriage, whether made in heaven or on this earth, is for better or worse" says Pallav with a smiling face and moist eyes." "The accident may damage the spinal cord and kill some nerves but affection and love help you to handle the tidal waves of destruction that pass through your body," the valiant army officer adds on to his earlier statement with a mournful determination.
Mobility does not present itself as an insurmountable obstacle for Pallav Desai. He has acquired a couple of extremely manouverable wheelchairs and adapted car, with hand controls. These have helped him to remain mobile and active. He has even travelled to Japan to participate in a tennis match for paraplegics like himself. Pallav takes part in car rallies for handicapped drivers and manages to win prizes depending on the skills of his able-bodied navigators.
But despite these smiles and laughter, optimism and visions for a better future, help from the army set-up and support from his family, Pallav knows deep down that there is discrimination against the disabled. By and large, they are unwelcome guests even when invited out of politeness or a a sense of embarrassment. Furthermore Pallav is acutely aware of the difference between the soldier who gets wounded during the war and the one who becomes disabled during peace time. The first one, whether living or dead, is definitely a hero who gets tributes from the entire nation but the second one does not enjoy the same privileges, although he too had offered the most precious gift to the nation, the gift of his own life.
The society does not want them to be brought into the mainstream activities. Pallav says with a touch of bitterness in his soft voice: "If people really want to invite us then they can not ignore the question of accessibility. They can not expect us to crawl on their stairs and on their wet toilet floors".
Pallav has availed of income tax and railway concessions permitted by the government to people with disabilities. He feels that the procedure of obtaining such concessions is very cumbersome, time-consuming and humiliatiing. Pallav suggests that there ought to be only one standard certificate with a photograph with all the details and this should be sufficient to obtain all concessions.
Pallav Desai is opposed to the concept of charity to people with disabilities. He demands that there ought to be a positive attitude giving disabled people the feelings of self- respect and dignity and reinforcing their self-confidence. The disabled should not be allowed to accept a marginal role but should be given a central place according to their respective interests, skills, assets, and contributions, etc. Pallav says "yes, that helicopter crash has broken my spine but I want to live a full life and I shall. Try to stop me, if you can."
Pallav knows the limitations of his physical condition and is mature enough to not to expect miracles. He is also deeply convinced that people with disabilities have a great deal to contribute to the progress of society. He has an overwhelmingly positive attitude towards life and declares that an unexpected spinal injury should not be allowed to reduce a person to be treated as a mere vegetable. Pallav welcomes the new Indian Disability Act with a great deal of enthusiasm and is convinced that it will get implemented, sooner or later. Pallav, at the age of 40 years, does not want to be written off by the society. He accepts his disability but wants to fight its adverse social consrequences. Pallav Desai, after all and above all, is a trained soldier. He knows how to fight and give his life, his most precious possession, for a good cause.
Case Study Number Ten
Sujata, now 34 years old, was born with cerebral palsy.
She is the youngest sister of a family of three, both her
brother and sister are normal. Her parents belong to a
rich, but somewhat conservative, Marwari family settled
in Calcutta for generations.
Sujatas parents came to know of her disability when she was not even two years. Sujata was not speaking or walking like other children of her age. Her plight was further complicated when she started to suffer from whooping cough and suffered two mild convulsions. Well known doctors were consulted by her family and an orthopaedic surgeon diagnosed that Sujata suffered from mild cerebral palsy.
Sujata Goenka developed an awkward posture and could not walk like a normal person, "it is a case of having bad legs" as some people described her. Sujata was not incapacitated but was noticeably handicapped. She wanted to run like other children of her age but could not and this fact she had to accept as a child. And her young brain did accept this cruel fact, but not without heartburn and bitterness. Now she knows that her disability is not inherited and that there is no cure for it. As a result of cerebral palsy, Sujata also has a speech defect and this added handicap has made her life even more taxing. Sujata realises that a little more damage to her brain after birth could have made her mentally retarded or could have completely affected the contol or coordination of all her four limbs. She knew in her tender years that she had to be trained to overcome the handicap. Sujata regrets that her parents were not given proper counselling after her diagnosis. Since Sujata was the first born and had such an obvious and visible disability her parents rejected her instead of showing sympathetic understanding.
Sujatas parents found it hard to accept her disability, and she had two younger and perfectly normal siblings. So the parents learned to keep Sujata, their first-born, out of their social life, family gatherings and outings. Even the domestic servants in her house were influenced by her parents attitude towards her. They would ignore her appeals for help and essntial services. Sujata had to learn to live with humiliation too.
Being affluent her parents could support her financially but had almost nothing to offer her emotionally. Whenever she looks back at her relationship with her parents, particularly in her formative years, Sujata is filled with anger and regrets their rejection of her. But Sujata was fortunate that her mothers mother accepted her as she was, a young girl with an awkward way of walking and a defective style of speech. It was this maternal grandmother of Sujata who took on the responsibility of caring for her until Sujata reached the age of nine years.
Some people with a handicap make use of it and instead of playing it down or denying that it exists they openly talk about it. Sujata is one of such disabled people and, unlike her parents, she has accepted the reality with all its harshness. Sujata went to a normal school and enjoyed deep friendships with her normal school-mates. Sujata knows that the parents of disabled children are always afraid that if they sent their children to normal school their children would be ridiculed and laughed at. Sujata is convinced that this is a myth and must be exploded. Normal children take great deal of care of disabled school-mates and go out of their to help them. Sujata thinks that not only the disabled children benefit from getting educated in normal school but the whole student community and their teachers end up learning skills of improved communication and methods of mutual help. Sujata remembers with gratitude the support provided by her own vice principal, Sister Cyril, which gave her self-confidence and stamina to overcome her problems. Sujata was encouraged to participate in all school activities.
After completing her school education, Sujata Goenka did her graduation in English Literature and then took a Diploma in Special Education for the Hearing Impaired, Mentally Retarded Multiply Disabled. Being herself disabled Sujata had better insight into the problems and needs of other disabled people and took professional qualifications to help them. As a volunteer Sujata has bee eaching disabled children in an NGO "Astha" in Delhi which is engaged in helping the disabled.
Sujata left her family home in Calcutta and moved to Delhi where she lives on her own and enjoys her independence. She does not want to get married because she does not believe in the institution of marriage. Her parents tried to force her to accept an arranged marriage but Sujata resisted. She also feels that responsibilities of a wife would prevent her from achieving her ambitions.
Sujata feels that the new Disability Act will not do any good for people with disabilities. She says that there are already many laws in India which never get implemented.
She thinks that disabled people in India are subjected to a lot of discrimination from birth and throughout their lives. They should neither be overprotected from the wide world outside nor excluded from routine family life but, on the other hand, should be encouraged to interact with able-bodied people so that they experience both rejection and acceptance of their handicap from the beginning and learn to live with such positive and negative sentiments. In order to create a barrier-free environment in all aspects that is from emotional, social, psychological to societal and environmental Sujata thinks that socialisation and normalisation should start at the beginning of disabled childrens life. They should be sent to normal school. They should be encouraged to have normal friends. They should be provided with opportunities to interact with non-disabled people, young and grown up.
Sujata is convinced of the importance of full integration and recommends that for this purpose schools, colleges, public buildings, railway station and parks should be made accessible to people with limited mobility like herself or for those in wheelchairs. She thinks that it is the society which creates a gulf by denying disabled people access to facilities like schools and colleges, places of work and worship. It is the duty of the society to bridge this gulf.
Sujata says that the experience of being heartlessly rejected by the so-called "normal" society is hurtful at any age but more so when one is young and excessively eager to get the acceptance and appreciation of others. There ought to be counselling services for the parents to understand and accept the specific disabilities of their children and benefit from the range of help that already exists.
THERE ARE 6 MILLION PEOPLE IN INDIA WHO SUFFER FROM LOCOMOTOR DISABILITY OF ONE KIND OR ANOTHER. THESE ARE PEOPLE LIKE PAllav desai AND sujata goenkaexcerpt from http://www.healthlibrary.com/reading/disability/narrate.htm