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In 2011, India declared itself
polio-free. It had taken decades of government and civil society
intervention to achieve this result in a country where an attack
of polio, and the physical disability it caused, was traditionally
regarded as punishment for past sins.
One of the early pioneers of polio activism in India was Fathema
Ismail, who was born in 1903. Ismail was the sister of the
flamboyant mill owner, Umar Sobhani, an ardent Congress party
activist who was very close to M.K. Gandhi and who, in fact,
supported the party financially in a major way. Given her
brother’s proximity to nationalist leaders, Ismail was naturally
also drawn to issues of social emancipation.
In 1936, she had served as the Secretary of the Simla branch of
the All India Women’s Conference. Her Nepean Sea Road residence in
Bombay (now Mumbai), where she lived after marriage, was a meeting
ground for members of the party. She was known to have hidden
Jayaprakash Narayan, then a young freedom fighter, under her bed
to escape getting arrested by the police! She was also actively
involved in women’s education and was a founder member of All
India Village Industries Association.
Her life, however, took a different turn when in the 1940s her
two-and-a-half-year-old daughter was diagnosed with poliomyelitis.
The shocked mother realised there was very little that could be
done, but driven by her personal anguish, she travelled the length
and breath of the country to ensure that her daughter got the best
medical attention available at that time. More than her daughter’s
condition, it was the attitude of the medical community and lack
of proper treatment for polio patients that disturbed her.
Finally, Ismail was referred to Dr M.G. Kini, a renowned
orthopaedic surgeon based in Madras (now Chennai). For around
eight months, her daughter underwent treatment at Stanley Medical
Hospital under the supervision of Dr Kini and all the while she
herself made sure to imbibe the basic principles that underlay the
rehabilitation of the polio stricken.
From Madras, she went to Pune next, since it offered her daughter
more salubrious weather conditions than those that prevailed in
Bombay. Here Ismail regularly visited the Army Rehabilitation
Centre, which took care of injured soldiers and officers, to
observe for herself the methods employed there.
After around three years of such work, she decided to put her
experience to good use by assisting parents struggling to get
their disabled children treated. She single-handedly networked
with the medical community to achieve this and her first step was
to collaborate with Bombay’s leading doctors to start a
rehabilitation centre.
By May 1947, even as the country was on the threshold of
independence, the Physiotherapy and Rehabilitation Centre for
Infantile Paralysis had taken shape. But it did not have premises
from which to operate. The space crunch was eventually resolved
after Dr A.V. Baliga, a surgeon and educationist, offered his
clinic to Ismail since he himself was going to the US on a
six-month tour. Thanks to Dr Baliga's generosity the Centre could
start functioning and patients began to trickle in as word spread.
By July 1948, the Centre had a waiting list of more than a hundred
patients with around 80 children under treatment.
Once the Centre was up and running, Ismail began to work towards
the creation of supportive organisations like the Society for the
Education of the Crippled (SEC), the Fellowship of the Physically
Handicapped, and the Children's Orthopaedic Hospital, all of which
continue to be around today.
Ismail was a true visionary who understood how difficult it was
for differently-abled children to get access to educational and
recreational facilities and she worked hard to address this
concern.
Veteran journalist, M.V. Kamath, who was then a reporter with ‘The
Free Press Journal’, did a story on her, naming her India’s Sister
Elizabeth Kenny. Kenny, incidentally, was a remarkable Australian
nurse who had evolved rehabilitation techniques for polio
patients. Such media coverage made Ismail’s work better known
among those who really needed such support and with this the
number of patients who sought medical assistance increased
dramatically. People began to realise that children with
disabilities had as much right to a future as any other child.
With the phenomenal increase in the number of patients, Ismail
decided to expand the movement. Since the rich and educated could
seek assistance from economically prosperous countries, she
decided to focus on the less privileged. They clearly needed help
and information.
In September 1947, just after the country had gained independence,
Ismail - ably supported and guided by the socially conscious
doctors and surgeons – established the ‘Society for the
Rehabilitation of Disabled and Crippled Children’. As Ismail put
it herself, it was to “organise diagnostic and treatment
facilities and to educate the public on the problem as well as to
collect statistics”. The government could now no longer overlook
her pioneering efforts in the area, and released a grant to ensure
that the good work being done could continue.
In 1951, she represented India at the Second International Polio
Poliomyelitis Congress. She also visited several countries to gain
first-hand experience on the different ways to support and help
polio survivors. She was awarded the Padma Shri in 1958 and was
nominated to the Rajya Sabha in 1978. The pioneering activist
passed away on February 4, 1987.
Piecing together the shards of Fathema Ismail’s remarkable life is
not easy given the sparse information available. For instance, the
question arises as to what happened to her daughter whose
treatment had led to the determined mother emerging as a
disability activist. Again Kamath provides some clues. In the
1970s, he was introduced to a certain Miss Ismail at a party in
New York. As he notes in his book, ‘Reporter at Large’, she turned
out to be the daughter of Fathema Ismail and bore no visible trace
of any disability. She was married and had children.
But it was not just her own daughter to whom Ismail had reached
out - she had helped innumerable children stand on their own feet
and enjoy lives on their own terms. Today, she continues to do
this through the institutions she built and nurtured.
A London based
journalist, Danish Khan teaches at MA King's College India
Institute.
He blogs at: http://urdufigures.blogspot.co.uk.
He can
be reached at danish.khan@gmail.com
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