As-I-look-back-on-it,I-see-it-as-a-defining-moment/page-of-my-life.
It-had-its-plus-points-as-well-its-drawbacks
http://www.livemint.com/Leisure/TIoEvzuPhNjv2hOC6lAYBM/The-ride-back-home.html .
Shakir and Rukaiya Virpurwala. Photographs by Abhijit Bhatlekar/Mint
At the entrance to their home, getting ready to go out. Their
siblings live as nuclear families in other parts of the city. Some of
Shakir’s friends have accepted Rukaiya into their gatherings; Shakir and
Rukaiya go occasionally. Their socializing is limited to strangers on
the streets—some kind, some wary of them. “In our neighbourhood, people
recognize us. A supermarket near our house has accepted Rukaiya’s
visits. They are used to her,” Shakir says.
It-had-its-plus-points-as-well-its-drawbacks
http://www.livemint.com/Leisure/TIoEvzuPhNjv2hOC6lAYBM/The-ride-back-home.html .
The ride back home
Shakir
Virpurwala gave up a career to take care of his disabled sister
Rukaiya. And fight for her right to be accepted in Mumbai’s public
spaces
Rukaiya
Virpurwala, 63, has spasticity with mental retardation, a relatively
rare condition that requires support for basic body movements, and the
most mundane of daily activities like eating, bathing or walking. The
Spastics Society of India, now called ADAPT (Able Disabled All People
Together), does provide special caretakers for a fee, but her sole
support and caretaker now is her 52-year-old brother Shakir.
A former
professor and copywriter, Shakir gave up his career three years ago when
their mother died, to take care of his sister. “She has me, and I have
her,” says Shakir, a bachelor, as he helps his sister adjust rubber
slippers over her socks-covered feet. She sits on a wheelchair
restlessly, anticipating an outing. This is the best part of their
day—getting ready, locking up the house and venturing out.
We met
recently, after a city tabloid published reports of the Virpurwala
siblings being denied entry at a restaurant called Stadium in south
Mumbai.
The
restaurateur denied Shakir’s claim that on seeing Rukaiya, the waiters
on duty said there were no tables available and almost “shooed” them
away. “There is a way you tell a customer if there are no tables. Their
attitude towards us was more like, ‘You can’t go in here, and we don’t
have to explain why.’ She is not disturbing anyone or causing any alarm
with odd behaviour. Why were we asked to leave?” argues Shakir. Most
restaurants declare “rights of admission reserved”. Shakir approached a
lawyer friend, who is helping them with information on how the law can
protect Rukaiya’s free movement in the public space.
The story
spread on social media. Shakir and Rukaiya became the city’s ambassadors
for a cause that rarely gets much attention, except, perhaps, in the
weepy TV show Satyamev Jayate.
The siblings
are like outsiders in the housing society they live in; most neighbours
are indifferent towards them, only noticing when Rukaiya tries to
speak—her speech is unclear, but voice loud.
Rukaiya looks at
the city’s bustle and its fretting humans with childlike wonder. I
discover this while accompanying her and Shakir for a walk on the
Mahalaxmi Race Course. She sits behind Shakir on their blue scooter. The
two-wheeler keeps pace with my walk; she is impatient for a serious
ride around town. “Go, go,” she would say to her brother, infuriated.
Shakir and
Rukaiya, who live in the house their father bought in 1978 near Haji
Ali, have three other siblings. Their father was an assistant collector
with the Brihanmumbai municipal corporation. By the time the family
moved from Abdul Rehman Street to the leafy housing society right in the
heart of south Mumbai, Shakir had completed his bachelor’s in English
from St Xavier’s College.
He started
working at an exports company before moving to Khalsa College as a
copywriting lecturer. All this while, Rukaiya attended the Society for
the Vocational Rehabilitation of the Retarded, while her parents tended
to her smallest needs.
Shakir, whose
family traces its roots to Godhra in Gujarat, says Rukaiya developed
spasticity and mental retardation as a baby, and has become weaker with
the years. She started developing the condition when she was about
eighteen months old, he says.
In 1997, their
father died, and in 2012, they lost their mother to a prolonged illness.
Since 2011, Shakir has been taking care of his sister. Since he doesn’t
have a full-time job, the siblings make do with Shakir’s freelance
copy- writing work and meagre financial help from their family.
“It has been
quite an exhausting three years for me; but I never regretted my
decision to give up so much to take care of her. I knew nobody else
would. And I know she will be worse off at state rehabilitation homes or
institutions,” says Shakir. “I am sure a specialized caretaker will be
better at caring for her. Besides the money that it would cost us, I am
concerned about her acceptance of one. She likes to go out, eat out, and
we have found a way to do all that and be happy,” says Shakir. They
often travel to Lamington Road for seekh kababs. .
“The incident at
Stadium was a culmination of many such incidents. Indirect belittling
of her, strange looks, excuses to keep us away from patrons—we have
faced this everywhere we go. Taxis refuse us all the time. There are
occasions when I take her to places many kilometres away on my feet and
she on her wheelchair,” he adds.
When denied
entry at the juice centre on Lamington Road, Shakir approached the
police, but they weren’t sure which section of the law would apply and
what case to register.
Legal experts
say The Persons with Disabilities (Equal Opportunities, Protection of
Rights and Full Participation) Act, 1995, has largely failed to empower
India’s disabled population of around 100 million. And a Bill to repeal
it, The Rights of Persons with Disabilities Bill, introduced in the
Rajya Sabha in 2013, is yet to become law. The draft attempts to
assimilate the provisions of the UN Convention on the Rights of Persons
with Disabilities (UNCRPD), which was ratified by India.
The Bill has
received mixed responses. Pankaj Sinha, a New Delhi-based advocate who
takes up cases related to the rights of the disabled in the high court
and Supreme Court, says, “The law can’t provide absolute protection and
dignity to the disabled population until there is social security
available for them, in the form of a minimum wage.” The private and the
government sectors have devised their own procedures. “Airports will
have a set of rules, for example,” says Sinha, “but there is no
centralized mechanism to help.” The Virpurwalas can claim some form of
compensation if they use the UNCRPD provisions, he says.
Shakir was
initially hesitant to be interviewed because Rukaiya does not like
questions. “She is smart enough to recognize who a journalist is,”
Shakir says, jokingly. “If our story is just a great one-time read, it
is a pity.”
He is active on
WhatsApp and Twitter, sharing news, photos and information. Photos of
the Virpurwala siblings continue to circulate on social media.
They want to be seen. They want to be embraced.
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