Beyond Labels: Living With an Invisible Disability

It’s the International Day of Person’s With Disability. There are more than 21 million disabled people in India, according to the last Census report.

What is the first image which comes to your mind when you think of a disabled person? A wheelchair?

The history of disability is a history of myths – myths propagated by society, shaped by our mindsets, enshrined by medical science, and then debunked by further investigation.

This complex cycle has repeated itself through decades of ignorance, often to disastrous effects on the lives of the disabled; because their issues are not confined to accessible toilets and ramps in buildings. Disability is not always visually apparent.

From epilepsy, to Crohn’s disease to autism, ADHD, learning abilities, mental illnesses, even cancers which impair day-to-day functioning, millions of people around the world are living with conditions which are not visible. And they are often judged, abused and neglected for looking ‘normal’ but acting different.

‘But You Don’t Look Sick!’ Living With an Invisible Disability

30-year-old Mohini Melhotra, an epilepsy patient since birth, my college mate was diagnosed with a grave bowel disease in 2006. She had to undergo numerous surgeries and finally had her colon removed. Like with many people with hidden conditions, she was repeatedly judged over using facilities such as accessible toilets - just because no one could see her illness.

It is frustrating! Here I am living with a horrid condition and people assume I’m a faker because they can’t see my condition. So I’m constantly policed and people whine when I use the disabled coach in the train or make use of the disability access on the rare occasion that it is actually offered, assuming that I am abusing a privilege.

Mohini Melhotra, Living With an Invisible Disability

Sometimes the attitude of people got on to Mohini so bad, that she considered using a cane to walk - with a visual sign, people are less likely to comment.

Below is the picture of Chitra Iyer with her son, Shravan. From birth, Chitra noticed that something wasn’t quite right with him. Even after 15 months, he wasn’t making eye contact, the coo-ing and the babbling were missing. At the age of 3, he was diagnosed with severe autism and cerebral palsy.

Shravan is a handsome boy who walks fine and doesn’t do the flapping of the hands, or the pacing of the limbs, like a typical autistic kid. In society, unless the disability manifests itself, unless you look ‘odd’ you are expected to behave normally. Chitra recounts that Shravan was involved in a frightening situation with neighbourhood kids once, because he looked ‘normal’ but behaved ‘odd’.

He has been called retard! People can’t understand why my child is like this. If he exhibits his disability, he is judged for it. He is misunderstood, stared at, labelled for being differently wired.

Chitra Iyer, Mother

The words “but they don’t look sick” are marginalising. People with invisible disabilities certainly don’t appreciate being informed that their conditions are “all in the head” or made up or their parents aren’t doing enough. They don’t need to be informed that only people in wheelchairs are really disabled, or that the only people who need service animals are blind. They need respect. They need accessibility. They need to be treated like human beings.

Mental illnesses are a huge part of invisible disabilities.

The World Health Organisation predicts that by 2020, 20% of India’s population will suffer from some form of mental illness. We are already woefully under-equipped to handle mental health issues. So with crumbling infrastructure, abject poverty forces many families to desert the mentally ill, leaving them to rot on the streets. The administration is virtually absent. And when a family can and is willing to support their ill relatives, there is little or no expert psychiatric help available in most parts of the country.

And given the huge stigma associated with any psychiatric illness, the vast majority continues to live with mental illness in the shadows, away from public view. That’s why WHO calls it the “hidden emergency”, one that the world has royally ignored.

But the government should get the talk going on reforms for invisible disabilities. People with disabilities already face a lot of ignorance and prejudice. People with invisible disabilities deal with prejudice on a whole new level.