Greater understanding of invisible disabilities needed in the post Covid scenario

The theme for International Day for Persons with Disabilities 2020 is “Building Back Better: toward a disability-inclusive, accessible and sustainable post COVID-19 World”. In India, people with disabilities remain an invisible minority during the pandemic. Those living with invisible disabilities feel an even greater sense of isolation. That’s the focus on #StoryOfTheWeek.

What happens when you are disabled but nobody can tell?

The word ‘disability’ brings up images of ramps, handrails, accessible toilets, etc. But there are innumerable conditions that cannot be helped with a reserved parking spot. Many of these conditions are poorly understood, even seen as weird or distasteful.

“I have had my share of not being understood by people, even doctors and faced a lot of bullying in college,”, says Dr Anubha Mahajan, a dentist and Founder, Chronic Pain India. Anubha has Complex Regional Pain Syndrome (CRPS). “I deal with chronic pain every day take painkillers intravenously. The pain levels in CRPS are above cancer levels but you cannot see it on my face”.

Invisible disabilities not always obvious

This invisibility brings along with It secrecy that has some advantages but many disadvantages. Lack of data regarding the number of people with invisible disabilities is a big problem. In the post Covid scenario these numbers are bound to rise with a growing number of people reporting mental health issues.

Another major challenge is lack of understanding.

“Some of the illnesses covered under invisible disabilities don’t even have blood tests etc,” points out Swati Agrawal, an inclusion activist who lives with Fibromyalgia and Bipolar Affective Disorder (Type-II). She has had to cope with anxiety, depression, chronic pain, and fatigue, which are compounded by many other symptoms.

Many people with invisible disabilities must hide their disabilities at workplaces or work under harrowing conditions that are not conducive considering their health. Many more face challenges at home when their family do not understand what they are going through. People think we are faking it or being lazy and it is difficult to prove them wrong. – Swati Agrawal, Diversity & Inclusion Activist

Poor awareness brings with it less accommodations, lack of funding for research, poor understanding among caregivers and non-availability of competent medical professionals.

Invisible disabilities can include chronic illnesses

Challenges that the #ReassessMS campaign focusing on multiple sclerosis, tried to highlight during a month-long campaign earlier this year.

“We highlighted the real-life challenges people living with multiple sclerosis experience in their daily lives”, says Renuka Malakar, National Secretary, Multiple Sclerosis Society of India (MSSI). “It is extremely hard to make people understand that “I’m not a kaamchor or ‘I’m not high on some substance”. This pandemic has forced us to think differently”.

How then does one ensure that the International Day for Persons with Disabilities 2020 theme of building an inclusive world for people with disabilities in the post Covid scenario does not leave those with invisible conditions behind?

“Some of the people with invisible disabilities are more vulnerable now due to reduced immunity”, says Swati. “The government could have provided monetary help to those who lost their sources of income. They need to have non-discriminatory ethical medical practices.”

Policies too need to be reviewed in partnership with disability organisations. “These organisations work overtime to ensure no one is left behind”, says Renuka. “Governments both at the Centre and states levels must work with them”.

Above all there needs to be greater understanding. “Focusing on people with invisible disabilities would help resolve many of these gaps. All of us want to be understood, after all”, adds Swati.

Watch in Sign Language

Also Read:

• #ReassessMS – Campaign on Multiple Sclerosis underlines gaps in disability assessment guidelines