The unseen amongst us

Exuberance, humour, passion — these are not emotions the average person associates with disability. But the majority of the Persons With Disability (PwDs) she met during the course of her three-year research were vivacious, resilient, and full of hope.

I suspect that at some point you must have toyed with this frivolous speculation like I have: which is worse — to go blind or go deaf? For the average person, the prospect of our ‘indispensable’ sensory organs ceasing to function is terrifying. Our dread comes from imagining what we would lose. Because the typical individual measures disability in terms of a deficiency, and reserves only pity for a Person with Disability (PwD).

But what if we viewed disability not as a liability or an affliction but as a different way of negotiating the world?

This was just one of the many fresh perspectives I gained while working on The Invisible Majority: India’s Abled Disabled, a book that involved a three-year marathon: a year of research and travel, a year of writing through the Covid-19 lockdown to complete the first draft, and a final gruelling year to undergo the processes of editing and other aspects of production and marketing leading to publication. My first step in the marathon was an intimate encounter with a subject on which I had written plenty of articles on, but hadn’t experienced before as an exercise in empathy.

A revealing experiment

On a late November evening in 2018, I joined a queue outside a large hall in a Bengaluru hotel, unaware that I was soon going to have my eyes bound tight with a broad silken sash. A hand guided me forward and I immediately lost all sense of direction. “I think we’re going around in circles,” I said with a nervous laugh. I could hear voices buzzing but after a couple of minutes, the hand led me across a vast, silent space and lowered me down, way down onto a flat, soft surface that felt like a mattress. A female voice to my right said, “Hi, I’m Yetnebersh but you can call me Yeti. I’m from Ethiopia and I’m blind. I’ve travelled all over the world and I love talking to people.”

That was enough to get us yakking away like two old neighbours over a village fence. Actually, it felt more like speed dating! Questions and answers shuttled rapidly between us. In no time I discovered that she was half my age and half Indian, that she had a three-month-old baby asleep in her room upstairs, and that we both came from societies that exert undue pressure on women to procreate. “In my country,” she said, “the very next day after the wedding, people ask the bride, when are you having the baby?” I explained the Indian expression “any good news?” which made her laugh. I described how, at an Ethiopian restaurant in Washington DC, I had eaten a pancake that tasted exactly like a wheat dosa. “What’s a dosa? Is it like a chapati?” she asked. I explained the difference. “Ah, you must have eaten injera,” she said, and added, “I love spicy food, so I love Indian food.”

We could have kept gabbing all night long but we were interrupted by an announcement asking us to read the words embroidered in relief on our cushions. I tentatively groped to my right and my fingertips brushed against several tiny protrusions. Was it Braille? In fact, my cushion, which displayed “be yourself” in lower case, was behind me. What I had fumbled with was Yeti’s silver bead purse!

After my blindfold was removed I found myself in a spacious hall with people seated on mattresses arranged along the perimeter. Yeti said, “Now you can see who you were talking to.” And although I was the same to her as before, this stunning African vision manifested before me like another Yeti, so I felt obliged to say hello once again. She gave me her double-sided visiting card: one side printed for the sighted and the other in Braille. Yetnebersh Nigussie was a disability rights activist and Right Livelihood Award winner, and one of the international speakers at the Indian Inclusion Summit (IIS) the following day.

A doorway to another world

Our exuberant conversation set the tone for the rest of the Friend-Raising Evening (as it was termed) and indeed for the entire disability marathon. Exuberance, humour, passion — these are not emotions that the average person associates with disability. But the IIS can best be described as a day-long carnival. PwDs outnumber average/typical individuals at this annual event filled with empowering talks, music, and general merriment. The ‘minority’ becomes the majority.

IIS was conceived by my co-author V R Ferose. If not for him, I wouldn’t have written The Invisible Majority and couldn’t have accomplished it so swiftly. For over 10 years this inclusion evangelist, whose journey began when his son was diagnosed with autism, has traversed the field of disability in India and abroad, not only nurturing PwDs through the India Inclusion Foundation but also cherry-picking individuals and organisations that have made pioneering or immense contributions to their welfare. He drew a blueprint for the architecture of the book, which would present a cradle-to-grave view of disability.

With a list of sources and the structural framework in hand, I began my marathon. To me, it became more than a journalistic enterprise; it was a doorway to a whole other universe. I met PwDs who had survived the bitterest circumstances, shrugged off victimhood, and been transformed into thriving individuals who were reaching out to help others like them. I met those who had adapted schools to the needs of children with disabilities, those who trained PwDs in skills to suit job opportunities, and employers who provided jobs that matched these skills. I met those who had started initiatives that enabled PwDs to participate fully in society and lead independent lives.

There were several lessons I imbibed during my marathon, and new concepts I was introduced to, such as ‘coolability’ and ‘disability gain’. I learnt that many PwDs have no patience with euphemisms like “challenged” and “differently-abled” and would rather be referred to as disabled even, since they do live in a disabling environment. Speaking of which, I became aware of the innumerable physical and social barriers they come up against every day. Huge swathes of the disabled population have been rendered invisible because lack of physical access has forced them to be confined to their homes; we overlook those who have ‘invisible disabilities’, and millions of them are missing in the national census! I learnt that the progressive disability law of our country has been barely implemented. And that a nascent disability movement is pushing back against this neglect and fighting for the rights of PwDs.

The inevitable labelling

Friends would ask me whether it was depressing to listen to the sad stories of the disabled. But the PwDs I met were vivacious, resilient, and full of hope for their future. By the way, I learnt to avoid labelling such individuals as heroes or role models — popular catchphrases of the media — because many of them are sick of being touted as brave or inspirational, especially when they’re not doing anything extraordinary. For example, a PwD I met in Bengaluru had no arms. After offering me a soft drink, when he opened the fridge and yanked out the bottle with his feet, I accepted it in a matter-of-fact way, making sure my face bore an appropriately bland expression. I had already learnt that the human body is highly adaptable and when a part stops functioning, another part compensates for it. In short: it’s no big deal.

Of course, events such as the Paralympics showcase genuine sporting achievements and help raise awareness about disability among the wider population. But society’s attitudes towards PwDs reveal a staggering level of ignorance, stigma, and superstition. I heard several eye-popping myths in the course of my marathon. However, I don’t claim to be a know-it-all. I realised the gaps in my own education as I continued to work on the book. One of the biggest revelations was such a fundamental notion that it’s a wonder it hadn’t struck me earlier: if we live long enough, as we grow older, every one of us will acquire some form of disability!

Remember that disability is simply defined as a restriction or inability of the body or mind to perform certain activities and engage with the world. It can be temporary or permanent. Besides old age, its causes include illness and accidents. A vast range of conditions from stammering to schizophrenia falls within its ambit. Therefore it makes eminent sense to make the world accessible for PwDs because it will end up benefitting each and every one of us.

A comprehensive overview

The Invisible Majority is perhaps the first non-academic book that presents a comprehensive overview of the disability sector in India. While it primarily focuses on amplifying the diverse, vibrant voices of PwDs, it also navigates a range of topics from history and laws to social attitudes and disability rights. It examines each pillar of the superstructure that spans the PwD’s life: awareness, prevention and diagnosis/early intervention, education, employment, lifestyle, assisted living, and advocacy. The book highlights the key roles played by caregivers, healthcare professionals, educators, trainers, and employers. It offers useful guidelines for parents of children with disabilities and features young entrepreneurs whose imaginative projects enhance the daily lives of PwDs. It also airs suggestions by PwDs, activists, and others in the disability sector on ways to build a disability movement and addresses the crucial question: How do we make India an inclusive nation?

The writer is a Bengaluru-based author and senior journalist who currently edits everyoneisgoodatsomething.com, an ongoing photo campaign featuring weekly stories of PwDs across India.