More than 20 families came to Shanti Auluck’s home in New Delhi with their sons, keen at first to arrange a marriage with her daughter in an age-old Indian custom, but with each visit came apologies and a change of heart. All of the families were turned off by the fact Auluck also has a son with Down Syndrome.
“There was this feeling that somehow he might have a negative impact on them, that he might rub off on them. There’s a lot of ignorance about disability,” Auluck said.
Finally Auluck, a mother of two and a doctor of psychology, learned to choose her words carefully.
“I’d say: ‘Yes, I have a son. He has a job, but he can’t go into academia’,” Auluck said.
For the 40 million to 60 million people with mental and physical disabilities in India, discrimination and stigma are daily battles. In a country where social standing — including through marriage — is all important, having a disability often means being relegated to the bottom of the pile.
“A lot of families keep their disabled children behind closed doors because they are embarrassed,” said Auluck, who is the director of Muskaan, a training and work center for people with intellectual disabilities.
A long-awaited bill introduced into parliament this month aims to give more people with disabilities equal rights — including access to education, employment and legal redress against discrimination. Inidan Congress Party Chair Sonia Gandhi has promised advocacy groups that the landmark legislation will be passed, seven years after India signed the UN Convention on the Rights of Persons with Disabilities.
“This is a game changer,” disabled rights leader Javed Abidi said, after one of the many protests and candle-lit vigils held in Delhi in recent weeks and attended by thousands of people to pressure politicians to pass the bill.
Others fear the well-meaning bill, even if it is passed, will make no difference to the way in which people with disabilities are treated, in a country where many existing laws are poorly enforced and often flouted.
Attitudes against people with disabilities, particularly women, are deeply entrenched, especially in poor rural areas where families are already struggling to make ends meet and social services are few.
“This whole scenario makes her more vulnerable — she is treated as a burden in the family, as a result domestic violence and sexual abuse is rampant,” said Shampa Sengupta, who has worked with people who are intellectually disabled in the eastern city of Kolkata for 25 years.
“Both at family level as well as the outside world, people think she is dependent,” said Sengupta, who herself battles chronic depression.
As a result, forced sterilization of women, particularly ones with intellectual disabilities, is still common, along with forced abortions for those who do become pregnant, Sengupta said.
In some cases, a disabled woman is given to be married to a man who is also “given” the woman’s sister as a bride, as a way of smoothing the deal and as a favor to the over-burdened husband, she said.
Police are less likely to treat cases of sexual assault against disabled women as seriously, said Sengupta, who is currently helping a family whose blind 14-year-old daughter was allegedly raped by a neighbor.
“There is a perception that disabled girls are worth less so they are given less attention by police,” she said
“Others are very sympathetic, offering her sweets and saying ‘poor girl.’ But that doesn’t mean her case will be treated in the same way [as others],” Sengupta said.
Activist Abidi, who was born with congenital spina bifida and is confined to a wheelchair, said that more education is needed to change attitudes. He said the bill was crucial to empower people with disabilities to take action themselves to correct society’s misperceptions.
“This is the start of something. The bill may not be perfect, but nothing ever is, and we are not going to get this chance again,” said Abidi, referring to looming general elections that are likely to see the left-leaning Congress Party booted out of power and the bill dropped.
Millions more people are to be classified as disabled by the bill, including those with autism and multiple sclerosis, which entitles them to government benefits. These people could also use the bill to fight discrimination in all areas, Abidi said.
“It means people with mental disabilities in particular have the right to hold a job, have the right to open a bank account and no one can tell them ‘no’ because of their disability,” Abidi said.
Some advocacy groups opposed the bill, which would replace a 1995 law, saying it has been watered down from earlier draft versions.
However, Zorin Singha, who was born deaf, said the current paper was “perfect” for the country’s 18 million people with hearing impairments, including making captions or sign language interpreters available for all electronic media.
Singha said he learned nothing when he was at school because his teachers, not trained to help deaf students, just kept telling him to speak. The new legislation is to give people with disabilities the right to a decent education.
“We have been waiting since independence for this, some of us even longer,” Singha said.
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