Shahid Akhter, editor, ETHealthworld, spoke to Nidhi Ashok Goyal, Founder and Executive Director, Rising Flame, to figure out the growing challenges associated with people with disabilities.
Challenges for People with Disabilities: Trends
I work for rights of person with disabilities. I’m disabled myself and I live with blindness.
It’s really important for us to recognise, identify, and visualise this important group of people with disability. Data from the 2011 census will tell you we’re just a little over 2 percent, but the global data indicates that around 15 percent of people live with disabilities. We’ve definitely moved forward, and the Rights of Persons with Disabilities Act, which was passed in 2016 in India, has expanded the number of disability groups. So, from 7 (which was in the older Act) to 21, which is now. But where are the people with disabilities? Are we counting them in the data that we collect? We, the governments, the organizations, the people, and the surveyors, just to give you a very brief example, are very crucial after a lot of advocacy back and forth for people with disabilities included in the national family health survey. This year, we were dropped out as a group altogether. Some of the reasons given were that the data wasn’t effective. We needed to change the questions; we did not need to drop out an entire group. I was really thinking about which citizens in this country are not counted and are persons who are not citizens enough. Why are we not visible in the data as much as we should be?
Challenges for People with Disabilities: Healthcare Infrastructure
When we talk about access to health, immediately, health infrastructure becomes a question. For people with disabilities, access to health infrastructure means physical infrastructure, digital infrastructure, equipment, gadgets, and technology. Physical infrastructure: does the hospital has a ramp, has access to a toilet, is there a sign language interpreter for information, are you aware of the booking of appointments, are the apps accessible to the right of your payment machine, the POS machine you know, and credit card machines that are becoming only touchable, accessible for people with disabilities? Are we looking at medical equipment, for example, a bed? Can the beds just go up and down so that the users can transfer independently? There are many such questions around medical infrastructure; unless we address them, health access for people with disabilities won’t become a reality, which is mandated by the International Instruments Union and Indian law.Challenges for People with Disabilities: Insurance
In a judgement in December 2022 in Delhi High Court, the Justice basically said the right to life, which is constitutional, includes the right to health and healthcare. Access to health insurance has been a source of discrimination for people with disabilities. We are under the IRDAI guidelines; we were in the category of substandard life, and we were denied insurance altogether. After the Delhi High Court judgement, it was directed to IRDAI to change these guidelines, to alter them and not have us living a substandard life, and also to have insurance packages that specifically cater to the needs of people with isabilities. To do it, preferably within two months, and we still see that implementation of this or stopping the discrimination against people with disabilities is still a very distant dream as far as health insurance is concerned.Challenges for People with Disabilities: Sexual & Reproductive Health
Sexual and reproductive health becomes very crucial as a subject or an issue for women with disabilities, particularly women and gender marginalised persons, I would say. To give you a few examples of what sexual health or reproductive health means for women with disabilities. We had a deaf woman who was pregnant and who came to the hospital, and her mother reported because she was the woman who was deaf and she was an adult woman. The mother said this was a rape case because the hospital did not have a sign language interpreter. Its really important that the statement be noted in a medico-legal case without the testimony of the survivor who was sitting there because of the paucity of the sign language interpreter, which later was rectified through an NGO. It was discovered that it was a pregnancy emerging out of a consensual relationship. It’s absolutely critical to the way we approach and depart from the law when it comes to women with disabilities. The law has not been super helpful. The Rights of Persons with Disabilities Act, if you see, has a clause saying that no termination of pregnancy of a woman with a disability can be done forcefully except in cases of severe disability, and the law refuses to define severe disability. It’s very imprecise because what are they doing? You know, I remember an advocacy meeting that I was having, and I said I’m 100 percent blind, so how can blindness get more severe than this so that somebody can take a decision about whether I should carry my pregnancy forward or not?
Challenges for People with Disabilities: Climate change
Climate change is the new discourse, and it’s really important because it’s not only emerging but crucial for now, like right now, and who’ll get left behind in climate change conversations, these people with disabilities? There is a massive impact on the health of people with disabilities and elderly people. We can’t imagine the mental and physical health impacts. To give you a small example, with many disabilities and chronic health conditions, you cannot regulate your own body temperature. So extreme heat waves and extreme drops in temperatures have a disproportionate impact on them, and this is not something that we are accounting for. If we don’t account for the mental and physical health or health impact for people with disabilities, the safety of persons with disabilities, and climate change solutions right now, we will land up again in a world that is great but exclusionary, creating a circle of exclusion for persons with disabilities.