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The ride back home
5 min read . 14 Feb 2015Shakir 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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