(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
national leaders.
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 Goenka:
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 goenka
excerpt from http://www.healthlibrary.com/reading/disability/narrate.htm