Get-hooked November 2, 2020
People with Invisible Disabilities Need Visibility in Law & Policy – Guest Column by Swati Agrawal
Swati Agrawal is a diversity and inclusion activist. She graduated from National Law School of India University, Bangalore. She is a Fibromyalgia and Bipolar Disorder Type-II warrior. She uses her own experiences to create more awareness about invisible illnesses and mental health.
The commonly known and understood disabilities are those that are more or less noticeable just by looking at the person. Did you know that all disabilities are not visible? Most people are familiar with visible disabilities, but do not know that not all disabilities are easily visible to naked eyes. Invisible disabilities are often not talked about or understood. Invisible disabilities come in the form of Lupus, Fibromyalgia, ME/Chronic Fatigue Syndrome etc. There is no one fixed definition of invisible disabilities. They come with myriad symptoms such as chronic pain, cognitive difficulties, fatigue, irritable bowel syndrome, balance problems etc.
These symptoms are often invisible to someone just looking at the person suffering from them. Even though invisible, they have important impact on functioning and quality of life of people suffering from such disabilities. As much as our law has taken very progressive steps to recognising the right of persons with disabilities, it has largely left out people with invisible disabilities. I examine some of the important laws and policies for persons with invisible disabilities.
Definition of disabilities under RPWD Act 2016
People with invisible disabilities should get recognition under the Rights of Persons with Disabilities Act. A person with a disability is defined under the Act as: “a person with long term physical, mental, intellectual or sensory impairment which, in interaction with barriers, hinders his full and effective participation in society equally with others.” This is a very progressive definition and includes all kinds of disabilities. It would have been great if we had just adopted this definition along with a 40% benchmark (this 40% benchmark is as per the current Act).
The problem is the Schedule to the Act which has listed out 21 disabilities for the purpose of many of the benefits under the Act. The Act is progressive in so far as it has expanded this list but is regressive as it leaves out many disabilities just by the fact that it needed to limit the scope of the benefits by prescribing a list. Under Section 58 of the Act, only people with these 21 disabilities can apply for the certificate of disability. This certificate is extremely important for exercising the rights under the Act.
A person with invisible disabilities also faces many barriers that impact their quality of life. There is no reason to exclude them from the benefits under the Act.
Protection against discrimination & reasonable accommodation at workplace
It is important that persons with invisible disabilities are given reasonable accommodation and protection against discrimination at workplace. In case of invisible disabilities, there is an additional matter of disclosure of the disability. People often remain silent about their illnesses as they fear loss of job or discrimination. With proper protection, people with invisible disabilities would be more likely to disclose their disability. This would benefit the workplace as well as they can devise the right environment and methods to ensure proper functioning and productivity of the persons with disabilities. In fact, this is an extension of Right to Equality and Non-discrimination under Section 3 of the Act. We need more awareness so that these rights are included in non-discrimination and equal opportunity policies at workplaces.
Access to accessible amenities in public spaces in India
Lots of people with invisible disabilities may need access to accessible amenities in public spaces such as accessible toilets, lifts, accessible parking, seats for people with disabilities in trains and buses etc. There are many reasons for this such as needing handrail for balancing, quick access to toilets due to bowel syndromes, accessible parking due to pain in legs and access to lift due to similar reasons. These are just some of the examples of cases where access to accessible amenities are needed. The access to many such amenities in public spaces is monitored based on the person having a disability certificate. This implies that they are not available for many invisible disabilities.
Access to welfare schemes
Currently various welfare schemes are restricted to persons with specified disabilities who meet the 40% benchmark. Invisible disabilities also cause barriers and restrictions in as much as visible disabilities. People with invisible disabilities may find it difficult to stay employed due to their health conditions. They may not have support or caregivers. They need access to proper health care and insurance. As long as they meet the 40% criteria, there is no reason to deny them the benefits of such schemes.
Need for statistics, information & awareness
There are lack of statistics and information about invisible disabilities. We do not know the estimate of people living with invisible disabilities in India. There is also lack of information and awareness about invisible disabilities. As often many of these disabilities do not have a blood or other lab test to confirm their diagnosis, patients struggle for years with misdiagnosis or in absence of a clear diagnosis. This problem can be mitigated if we have proper statistics, information, and awareness. This data is also important for medical research. The Washington Group has devised question sets that we should adopt in our census to get clear idea of number of persons with disabilities instead of restricting it to disabilities mentioned in the Schedule. Another important aspect is to spread awareness about the broad definition of the disability under the Act so that people come forward to identify themselves as disabled even when the Enumerator does not ask the right questions.
I would like to end on a hopeful note. There is increasing awareness about invisible disabilities. A lot more people with invisible disabilities have been talking about their experiences since I first got diagnosed. The Act now covers thalassemia, mental illnesses, chronic neurological conditions etc. so the benefits are definitely reaching more people. With greater awareness and policy changes, we can make our society more accessible for persons with invisible disabilities.
Mathias, Kaaren. “Our understanding of disability must expand to include people with invisible disabilities.” indianexpress.com. Indian Express, 3 December 2018, https://indianexpress.com/article/opinion/our-understanding-of-disability-must-expand-to-include-people-with-invisible-disabilities-5476146/
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