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Care vs Consent: For Persons with Disability, the Line is Often Thin and a Tad More Complicated

Care vs Consent: For Persons with Disability, the Line is Often Thin and a Tad More Complicated

For PWD, the first kind of violation of consent often comes from home or caregivers.

Smitha Sadasivan was working with the Disability Legislation Unit of Chennai-based NGO Vidya Sagar and had been earning her own living for several years before she could finally "convince" her well-meaning uncle that she did not need his money every time he visited. Once when she protested, he tried to infantalize her and kiss her on the cheek. Sadasivan instantly rebuked him, following which her uncle finally ceased offering her cash or treating her like a child.

Consent vs Care

Sadasivan also recalls the time when she was undergoing repeated tests before doctors could correctly diagnose her with multiple sclerosis. She later realised that, owing to the unusual circumstances of her condition, one of doctors had been using her as a 'subject' for medical patients. "He told me my diagnosis was not yet complete and made sure I went for repeated testings. Forget asking for my consent, he never even told me I was being treated like a guinea pig until I figured it out myself," she tells a captive audience in New Delhi. The fact that the violation came from a doctor is all the more horrifying.

She was speaking at the second anniversary of Rising Flame, a Mumbai-based NGO launched by disability rights activist Nidhi Goyal, who lost her eyesight to a degenerative condition at the age of 15. Incidentally, it was also Goyal's birthday. On this particular occasion, the activist and member of UN Women Executive Director's advisory board chose to discuss consent and how it differs for people with disabilities (PWDs) and non-disabled persons.

When it comes to persons with disabilities, consent becomes a tad bit more complicated, Goyal tells News18. She explains two main ways in which non-disabled persons often violate a PWD's consent.

"The first kind of violation often comes from home or caregivers," Goyal, who is also India's first visually impaired stand-up comedienne, says. Caregivers, in some cases, have the agency to both physically and mentally violate a PWD's consent in the garb of support or help. It can also get difficult for PWDs to voice their lack of consent out of a sense of obligation towards the caregiver or even fear of them leaving. Specially when a person needs the caregiver's help to carry out day-to-day and even intimate activities.

As per the 2011 census data, India had 26.8 million PWDs. A 2018 survey conducted with 729 women with disabilities in the state of Odisha, over 12 percent of the respondents reported incidents of rape, a report in The Indian Express quoted.

When it comes to sexual harassment of people with disabilities, this issue was doubly magnified. "If a romantic partner inflicts injury on a PWD, many may think twice before protesting. They feel they owe their partners something for choosing them, for 'bearing' the burden," Goyal says. This is specially pronounced in cases of PWDs with non-disabled partners. Nipun Malhotra, a popular face among disability rights activists in Delhi, recalls the time when his friends and colleagues were shocked and surprised to meet his girlfriend, who was non-disabled. "It shows the kind of imbalance of power that exists in most relationships between disabled and non-disabled individuals," Malhotra points out.

Consent vs Choice

In case of Harpriti Reddy who is deaf, the choice of whom to marry was also subject to her family's consent and not hers. Families tendto pair deaf people with non-deaf partners, Reddy explains in sign language, hoping it would lead to off-springs who are not deaf. Reddy recalls how her parents had tried to do the same, but in the end she managed to marry the person of her choice.

Lawyer Amba Salelkar, who has for years worked with women with disabilities, stresses that in terms of access to public spaces and representation of PWDs in public policies and laws as well as politics, much is needed to be done. And she says that most of this comes from lack of inclusion of PWDs in politics. "This lack of representation or participation often grows from lack of access," Salelkar says, adding most platforms of political news and information as well as representation were not inclusive of a PWD's needs. Such deficiencies can be seen in even something as basic as architectural planning of buildings and public spaces that hinder participation. News18 had in May reported that organisers of a Delhi-based event had invited wheelchair-using activist Nipun Malhotra to discuss the issue of access of PWD in public spaces, but failed to provide him a ramp to get on the stage.

It is only after being repeatedly vocal about issues like physical autonomy, agency, rights and equality, that PWDs can become a part of political discourse and policy frameworks. In that respect, 'Rising Flame' has worked on increasing visibility of the history of women with disability in India by documenting data on abuse and bullying faced by disabled children in so-called inclusive schools. "We have also started grooming and training fellowships for PWD youth to help them get adequate employment opportunities," founder Nidhi Goyal tells News18, even as the first batch of fellows awaits completion of the programme. "The motto of the the organisation is 'nothing about us without us'," Goyal says, adding that her group is working tirelessly to include marginalised and vulnerable voices in the country's socio-political and economic narrative.

Sadasivan, who recently served as an advisor with the Election Commission of India to work on the matter of increasing visibility of PWDs in electoral politics, says that for governments, the first point would be to at least consult PWDs when making decisions about them. "The honourable PM recently gave us a new name, 'Divyang'," she says. "May be we would have come up with a better name if he or the government had consulted us on it," Sadasivan signs off.