In the early nineties, when she started her work as a disability rights activist, Shampa Sengupta was part of an effort to set up a school for disabled children in a town in Behala. On the first day of school, some residents from the neighborhood tried to prevent the disabled children from entering the place, as they somehow had a “bad influence” on the “normal” children. When the children were inside, angry local residents threw bricks at the school.
“That is unthinkable today,” says Sengupta, 56. The understanding of disability has changed over the past three decades. The Behala School, which got off to a bad start, is now known as the Mentaid Special School and is also supported by the neighborhood.
Disability is also no longer seen as “something that requires charity,” says Sengupta. Instead, the conversation about it has changed to one of the rights. This change is possible, says Sengupta, because of the disability laws, first in 1995 and then in 2016, and the disability rights movement. “Even if a law is not implemented, it helps,” says Sengupta, who founded the Sruti Disability Rights Center in the city in 2005 to campaign for disability rights with a focus on sexual violence.
However, these achievements must be measured by what remains to be achieved. Which is immense.
Life is tough for someone with a disability. But in this part of the world, a disabled person generally faces insurmountable difficulties due to the way in which spaces around them, as well as institutions and facilities, are designed or structured. Or not. Something as harmless as a blinking OTP can cause a minor trauma to those who are not trained in using the smartphone, which itself, as ubiquitous as it may seem, is not suitable for many people with disabilities.
Small things can be left out by many people, not to mention whole processes in offices or banks that can completely exclude the disabled.
Disabled people are denied access because most systems are coordinated so that they are more or less invisible, not to mention the signs on public transport. It is also because the able-bodied close their eyes or just stare.
Much would change, says Sengupta, if all children grew up with different types of children and people.
As happened in Sengupta’s case. Her mother, a teacher, wanted a full-time carer for her daughter. When the nurse arrived, it was found that she was hearing impaired. Although relatives said a child could not be looked after by such a person, Sengupta’s mother insisted otherwise. “Ma’s decision influenced me deeply,” says Sengupta.
Sengupta later attended Jadavpur University and studied comparative literature, which did his part. “I think it’s literature that gives you a worldview,” she says. She took a certificate course in special education at the Indian Institute of Cerebral Palsy, but soon found that she wasn’t interested in teaching. This would lead her to shift her focus to advocacy.
The Sruti Disability Rights Center is not a formal group and relies on volunteers. Sengupta is also the joint secretary of the National Platform for the Rights of the Disabled (NPRD), India’s largest network for people with disabilities with several Lakhs members from different states.
Sengupta made a decision in her personal life that deepened her understanding, even if it took its toll. She married someone who told her about his mother’s intellectual disability when they first met. “So I became a supervisor, but of my own free will. Caring for a mentally ill person has taken its toll. My mental state has worsened, ”she says. She eventually came out through “self-counseling and self-analysis” but finds it very important to talk about the mental health of the carers.
She points out how the pandemic has destroyed the lives of the disabled.
Most people with disabilities work in unorganized sectors and many of them have lost their jobs. “We see a lot of disabled people who work as street vendors at train stations. In the second wave, not only disabled children but also young adults who need support and care in everyday life lost their parents. ”The government has not thought of them. The CoWin website remains inaccessible to the visually impaired, as does the Arogyasetu app.
Most web platforms are not accessible to the visually impaired and they cannot take online courses, she points out. Masks prevent hearing impaired people who communicate with lip movements from expressing themselves. Special schools remained closed and therapy was denied to children. “As people were asked to avoid being touched, people with mobility problems who depend on others found it difficult to get around because our cities are not accessible. Apart from Kerala, no state has set up a Covid helpline with sign language facilities.
Last October, Sengupta wrote to the Calcutta Municipal Corporation (CMC) to include the disabled in the study that CMC conducted on people with co-morbid conditions during the pandemic. “It’s strange that NGOs have to say that,” says Sengupta. She has not yet heard from the authorities.
Sengupta is particularly concerned about the increase in sexual violence during the pandemic. The sexual violence experienced by disabled people is an area that is little talked about. It’s an area she started working in after the first few years.
“I was the first employee of Swayam, an organization that works against violence against women,” says Sengupta. “The group rape of a young woman with speech and hearing impairment in 2000 changed my path. I decided to work at the interface between disability and gender, ”she says.
“When you work at intersections, the challenges are bigger,” she adds. “Not all women’s groups understand disability issues, nor are disability groups aware of gender rights,” says Sengupta. “I had the opportunity to meet members of the Verma committee following the gang rape case in Delhi in 2012. Members told me that they didn’t get many referrals about disabled women. They kept asking me for more case studies to better understand the problem. Our criminal law now includes the issue of disabled women, ”says Sengupta. She took into account that both the country’s disability law and sexual violence laws toughly incorporate the issue of women with disabilities she had worked for, the milestones of her life.
“Sometimes the FIR is just not spelled correctly. A speech impaired person can be mistaken for deaf. The whole case then changes, ”she adds. “You can’t blame the police, authorities or institutions for that.”
What is really responsible is a terrifying lack of information that is spreading across communities and institutions and still generating ignorance and fear. Information about the law, rights, facilities can empower disabled people. Even now, parents with a disabled child may not even know where to go, which school to take their child to, what to do in the first place.
When it comes to information, empathy is required. Which brings us back to the argument for an inclusive education in which all children grow up together, even if the model brings its own challenges. But empathy is a matter of course for children. “Children with disabilities who attended mainstream schools always say that their classmates were their friends. If they were discriminated against, it was by teachers and the authorities, the adults, ”says Sengupta.
Now, as you grow up, it is very important to learn to respect differences if right-wing politics is to make uniformity a code. “It’s dangerous when it comes to disability,” says Sengupta.
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