Did you know that all disabilities are not visible? Invisible disabilities are often not talked about or understood. These include illnesses such as Lupus, Fibromyalgia, ME/Chronic Fatigue Syndrome etc. They come with myriad symptoms such as chronic pain, cognitive difficulties, fatigue, irritable bowel syndrome etc. These symptoms are often invisible to a cursory glance. Even though they are invisible, they have an important impact on the quality of life of people suffering from such disabilities. Even though our law has taken progressive steps to recognise the right of persons with disabilities, it has largely left out people with invisible disabilities.
People with invisible disabilities should get recognition under the Rights of Persons with Disabilities Act, 2016. 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 progressive and inclusive definition. The problem is a Schedule to the Act which has listed out 21 disabilities for the purpose of many of the benefits under the Act. The Act has expanded this list but is regressive in so far as it leaves out many disabilities. Under Section 58 of the Act, only people with these 21 disabilities can apply for the certificate of disability. This certificate is important for people to exercise rights under the Act.
It is important that persons with invisible disabilities are given reasonable accommodation and protection against discrimination in workplaces. In case of invisible disabilities, there is the matter of disclosure of disability. People often remain silent about their illnesses as they fear the 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.
Many 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 public transport. People may need a handrail, accessible parking and access to lift. These are just some of the examples of cases where access to amenities are necessary. Access to these amenities is monitored based on a disability certificate. This implies that they are not available for many invisible disabilities.
There is a lack of statistics and information about invisible disabilities. We do even have am estimate of people living with invisible disabilities in India. There is also a lack of information and awareness about invisible disabilities. 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 to get a clear idea of the number of persons with disabilities in a region. Another important requirement 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 during Census.
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 and chronic neurological conditions, so the benefits are reaching more people. With greater awareness and changes in policy, we can make our society more accessible for persons with invisible disabilities.
(The writer is a graduate from National Law School of India University, Bengaluru. She is a Fibromyalgia and Bipolar Disorder Type-II warrior)