Unveiling the unseen: Invisible disability survivors, experts raise need for specialised care

Goa: Smitha Sadasivan, a self-advocate for cross-disability rights in India, said fatigue was the most consistent symptom in her struggle in life with multiple sclerosis but she was often questioned about it as her disability was not visible.

Multiple sclerosis is one of the invisible disabilities, also known as hidden disabilities or non-visible disabilities (NVDs), that are not immediately apparent. They are typically chronic illnesses and conditions that significantly impair normal activities of daily living.

"I function with a wheelchair but although able-minded people find her functioning without one, I am immediately questioned due to the prevalent notion of disability being all visible and not dynamic," she said while speaking at a session on invisible disabilities at the International Purple Fest here.

She said she is often perceived as drunk while driving due to slurred speech and the normalised appearance of her body.

Sadasivan stressed the need for a holistic approach to deal with such illnesses, taking into account the diagnosis of an illness, accessibility of doctors, technology and hospitals, and the expensive cost of a diagnosis.

Vikram Bhatt, who suffers from polymyositis, a disease that causes muscles to become irritated and inflamed, said it took 20 years to get the diagnosis of the disease.

"The circus of going to every doctor and that the illness is in my mind and is not real is an ever-going vicious circle. I was misdiagnosed with fibromyalgia. It is considered an emotional, mental and physical turmoil in the body. But finally, after 20 long years, I have been diagnosed with polymyositis. In the last 20 years, my body has taken such a beating, it is indescribable," he said.

Dr Nikhil Gupta from the Lupus Trust said there is a high probability of a chronic illness becoming a disability in the long run.

"Nevertheless, due to the lack of super specialist hospitals, services and doctors in particular, it is highly impossible to diagnose an illness, especially in remote and rural areas," he said.

Gupta emphasised the acceptance of a diagnosed disease which leads to growth in awareness in the lives of an individual as well as the community that person lives in.

He also flagged the impractical and expensive cost of diagnosis in Indian hospitals.

Subhojit Goswami from the Leprosy Mission Trust talked about the comprehensive definition of accessibility of technology in hospitals.

He pitched for a combination of awareness among people and society, and the necessary and affordable healthcare infrastructure.

He also highlighted consolidated knowledge repositories issued by hospitals for a greater impact through awareness amongst the people visiting hospitals for themselves or with others.

On certification and health insurance crisis, Ayushmita Samal, a member of the Organisation for Rare Diseases India, laid emphasis on the accounts of lived experiences and encounters with trauma when it comes to applying for disability certificates in India.

"We are in a huge need of intersectionality when it comes to budget allocation. For instance, the global standard for budget allocation for policies related to disability is 1-2% of a country's Gross Domestic Product. However, India's current expenditure is hardly 0.002% of its GDP," Samal said.

He further added that it is important to lay stress on the reduced expenditure.

Muralidharan Viswanath, national secretary of the National Platform for the Rights of the Disabled, said the harassment people face when they apply for a disability certificate in India is a huge issue.

According to the 2011 census, there were 2 crore 68 lakh people identified as disabled.

"This is the data available when there were seven legal(ised) disabilities as per the Persons with Disability Act, 1995. However, the Rights to Persons with Disability Act, 2016 lists 21 disabilities recognised by the Indian state. Still, as of 2022, there are 1 crore 74 lakh people in India who are certified and disabled, of whom 88 lakh have got UDID (Unique Disability ID). This shows the reality of certification of disability in India," he added.

Joshua Mark George, a mental health worker, raised the significance of community support.

"Disability is not well recognised, accepted or supported. It is the systemic structure that excludes us. Disability is intersectional where the identities work together in solidarity," George said.

Praful Baweja, co-founder, of 6 Degrees Diversity Counsel, lays importance on navigating two disabilities and gender identities together.

"Being a male, how difficult it is to ask for help! Nevertheless, now that I know better, I do better. There is not an association of shame or a question of ego anymore." Dr Anubha Mahajan, Founder, of Chronic Pain India, said.

"It is the acceptance which makes our lives easier and perhaps lovelier. To be a young woman, you are threatened and cornered by a hegemonic society. The questions of marriage are thrown at you. You are asked to look presentable. It is extremely disheartening what a young female entrepreneur goes through in the absence of support groups," Mahajan said.

The International Purple Fest-Goa 2024 is a festival emphasising diversity, inclusivity, and empowerment on a global scale.