Category: SHRUTI PUSHKARNA

By Shruti Pushkarna

Before I delve into this piece, I’d like to congratulate Team MxM on their tenth anniversary. Feels like it was eons ago, when I joined the team in August 2011. As my Editor handed me varied assignments, I saw myself mature and learn. Even today, I credit a great deal to MxM for helping me refine my writing style and develop a deeper understanding of issues. I continue my association with the team, with this fortnightly column on Media and Disability, with the belief that awareness can help create an empathetic society.

As a young girl, 10 or 12 years of age, I was quite interested in pursuing a sport. Badminton, specifically. But it wasn’t easy to nurture my passion.

At school, teachers only seemed to care about the academic scorecard of every student. If you so much asked to be excused for a sporting event, you were deemed lazy and unintelligent. There was no talk around the importance of sports in shaping one’s personality, team spirit and confidence.

At home, parents were busy grappling with their daily difficulties due to my mother’s chronic illness. However, on my insistence, they got me a temporary membership to a sports club nearby. I have vivid memories of that summer day, jumpy, all dressed up, and a racket in hand. I walked in with a beaming glow, as if I had already won my first game.

But the reality was very different from what I had imagined while lacing up my shoes that afternoon. Older men, who dominated the courts, overlooked me. I waited patiently for my turn. This repeated a few times, also because I didn’t have anyone my age to play with.

Soon I made peace, deciding not to pursue this interest further. Once in a blue moon, I would find a friend to play with, but the vehemence was gone.

Why am I reliving this childhood episode today, after all these years?

Sports have been the flavour of the season. After India’s best performance in four decades at the Tokyo Olympics, the Paralympic medal tally brought more cheer. India’s global ranking moved up to 24, with five golds in our kitty.

Each of these champions, who made the country proud, has a story to tell. An account of their beginnings, the budding interest, the journey, the follies, those who supported them, those who shunned them, an account laden with respective set of challenges and achievements.

As the medals started coming in, the Indian audiences began to take notice of a body of sports they never really followed. People on Twitter made open confessions, some journalists even, that they’d never seen Paralympics or any tournament involving Para sports.

It was the success rate that forced everyone to watch and applaud. Thanks to our shooters, archers and athletes, the national conversation steered away from cricket and focused on people beyond the average able-bodied citizen.

Between 1968 and 2021, India won 12 medals altogether. Whereas we got 19 just in this year! The Paralympics created new sporting icons for the country. This was our chance to acknowledge human ability beyond disability. Not just celebrating them as Heroes on primetime but recounting their additional challenges and the need for access.

Inclusion. I kept scanning media coverage for this one word, something the disabled community has long been fighting for. The focus of most news items (barring a few exceptions) in both print and television was on the divine, almost supernatural abilities of the winners.

There was no mention of how the player made his or her way through an inaccessible environment. What are the hurdles in infrastructural access? How difficult is it to get a corporate sponsor or a government body to arrange for special equipment or travel? What is the kind of money allocated to Para sports in the total sports budget?

The other obvious thing missing from the discourse was ‘disability’ itself. What does it mean to live on the fringes of society, unseen and neglected? What is it to be excluded from mainstream activities of education, employment or recreation simply because the physical spaces are ridden with barriers?

Most persons with disabilities lead undignified lives, because they are dependent and confined to the four walls of their homes. They are not seen as contributing members of the community. So if a disabled person manages to achieve something, it comes with a ‘Wow’ element. Because let’s admit it, a majority of us cannot fathom a reality where persons with disabilities lead normal lives.

It took nineteen medals since 1968, for us to nationally acknowledge their feat. Wonder how many more will it take for the media to look beyond their special abilities.

Sport is believed to be an enabler and an equaliser. People from different backgrounds compete on a common front. The same principle applies to disability. The victorious images of our Para champions can wash away the stereotypes of handicap. Once seen in an active avatar, the world can perceive the disabled folk as people with varied characteristics. See them as people first and disabled after.

Insensitivity and apathy springs from our inability to imagine a diverse scenario. Social media was full of ridiculous jokes and cartoons. One of them stated, that we should just break one or two limbs of our sportspersons before the next Olympics.

Reading that made me angry. Just like the time someone got into a Twitter row with me, saying the disabled folk have no business going out to a shopping mall.

But what made me angrier were the shallow interactions and on the surface reporting around this sporting milestone.

The media had the opportunity to bust a few myths. This was a chance to understand that disability is only a condition, and not something that defines a person’s identity.

Shooter Avani Lekhara became the first Indian woman to win a gold at Paralympics. This was an occasion for the media to investigate the state of women with disabilities. How many of them manage to get an education? How many of them face abuse inside and outside their homes due to their gender and bodily limitations?

I can go on ranting, but the moot point is that people simply don’t know enough about disability. Questions need to be asked. Situations need to be probed into. No amount of cash prizes and gifts or airtime will compensate for a faceless existence that the society has handed out to its 2.68 crore population.

Shruti Pushkarna is a former journalist (part of the founding team of MxMIndia) who has moved full-time to the social sector. Shruti writes for MxMIndia every other Thursday. Her views here are personal. You can reach her via Twitter at @shrutipushkarna

By Shruti Pushkarna

It’s been five years since I quit the media to work in the non-profit sector. Whenever I tell people that I work with the disabled community, I get typecast into this ‘saintly selfless soul’, who chose to sacrifice her economic aspirations for the larger good. My vivid imagination introduces music from Ramanand Sagar’s ‘Ramayan’ in the background.

But there’s nothing pious or heroic about my choice of career. It’s a job, albeit with a purpose and a passion for equality. It’s because I work with a minority (not sure if you can call 15% of the global population that), public reactions are riddled with the ‘wow’ element.

Society perceives the disabled as ‘becharas’, something that domain experts and activists have been advocating against. The bechara syndrome arises from our tendency to accentuate the limitation. And what’s physically obvious and ‘different’, is easy to isolate. Often disabled people internalise a feeling of helplessness, which emanates from this societal perception. Many even believe they are paying for the sins of a past life, as part of a divine plan.

It’s interesting how we address someone as blind, deaf, autistic, wheelchair bound and so on. Why don’t we do the same for able-bodied persons? Because we recognise people by their names, characteristics, professions or families. But when it comes to persons with disabilities, we omit the person. Their identity becomes their condition (read inability).

The portrayal of disability in literature, films, television and news also reflects a ‘pitiful’ or ‘abnormal’ existence.  Never mind the fact that there are thousands of persons with disabilities who refute the prevalent stereotypes in their daily living.

Recently I heard an interview with Dean du Plessis, a Zimbabwean cricket commentator who is totally blind. Dean is the first and perhaps the only blind person who participated in international matches. It blew my mind to picture a blind guy giving ball-by-ball commentary on radio and television. His techniques were simple, picking audio cues from the stump mics and amassing on his knowledge of the game. Of course, the job requires great attention to detail, because he has no access to visual prompts.

Likewise, there are chefs, dancers, yoga instructors, content writers, radio jockeys, athletes, entrepreneurs and other professionals who lead fulfilling lives despite their disability. Instead of fixating on the problem, they build solutions to circumvent the barriers in physical as well as the virtual environment.

My encounters with a diverse set of people have taught me an important lesson. To bring the focus back on the person. Traits, abilities or inabilities follow next. Hence the usage of the term, ‘person with disability’.

And not all of them are heroes. They can be courageous, determinate, resilient, selfish, greedy or even malicious. There might be nothing ‘divyang’ (divine) about certain disabled folk.

In the American legal and political drama series, ‘The Good Wife’, Michael J Fox plays the part of a scheming lawyer, Louis Canning, who provokes the protagonist, Alicia Florrick for several episodes. Canning suffers from dyskinesia which causes involuntary, erratic, writhing movements of the face, arms, legs or trunk. But his disability doesn’t generate a typically sympathetic response, because the character abuses his condition to get ahead and manipulate situations.

Louis Canning challenges the clichés associated with disability. His flaws humanize him, taking the spotlight away from his ‘suffering’.

The disabled population is a heterogenous subset, just like any other citizen group. So why do we tend to paint them in a certain light?

A battle for equal rights cannot be based on vulnerabilities. The dialogue on disability inclusion has to acknowledge all aspects and complexities of human existence.

Shruti Pushkarna is a former journalist who now works as a programmes and media specialist for the inclusion of persons with disabilities. Shruti writes for MxMIndia every other Thursday. Her views here are personal. You can reach her via Twitter at @shrutipushkarna

By Shruti Pushkarna

The other day, I was hanging out with a seven-year-old who excitedly put her games and toys on display for me. And then she invited me to play her favourite game, ‘Memory’. Happily losing to her, I noticed how she swiftly matched the pieces, almost unconsciously reinforcing the associations in her nascent mind.

Associations. Perceptions. Stereotypes. It’s a vicious circle.

Think Disability. What pops up in your head? A wheelchair, crutches, white cane, physical deformity or maybe mental incongruity?

Over the years, we have come to identify disability with either an assistive aid that reduces the inability (to walk, stand, see, hear, speak) or an oddity that separates ‘them’ from ‘us’.

Essentially, it’s a physically visible or obvious association that helps us recognise and categorise a person with disability.

But what about a condition that might not require an assistive equipment or is evident in external appearance?

An invisible disability is a physical, mental or neurological condition that is not apparent and yet it limits a person’s movements, sensory abilities and activities of daily living. These include Diabetes, Sarcoidosis, Ankylosing Spondylitis, Hepatitis C, Chronic Fatigue Syndrome, Traumatic Brain Injury, Inflammatory Bowel Disease and so on. And not to forget the latest one, Long Covid.

Last year, I wrote a piece on how persons with invisible disabilities face discrimination, dismissal and rejection by the society. My articulations were based on literature, lived experiences of people and portrayals in the media.

Today my words emanate from a personal ordeal. My skirmish with Covid has brought me one step closer to the idea of living with a debilitating condition that is not only hard to diagnose but harder to explain to people around you.

A Colorado-based organisation, The Invisible Disabilities Association, began hosting Invisible Disabilities Week (IDW) in 2014. This year IDW is being observed from October 17-23, to spread awareness, create educational programmes and advocate for supportive legislation.

The Invisible Disabilities Awareness campaign encourages people to participate and share their own stories of #visiblecourage. This prompted me to recount my ongoing episode.

(Disclaimer-In all likelihood mine is not a lifelong condition.)

For me, Covid itself was not all that bad. I had the usual fever, congestion and fatigue, but what ensued a month after recovery, was much worse. The Delta variant attacked my gut, something many other patients have reported as well. Except five months on, my symptoms persist. This is despite multiple clinical examinations, tests, biopsies and what not.  During and post-Covid, my body has been subjected to medicines like never before. And I wonder to what end.

Covid has changed the definition of normalcy. Both physical and mental.

On the surface, no one can call me sick. I lead a so-called ‘normal’ life, go out to work every day, manage my household, attend to the needs of my family and socialise to whatever extent I can.

Underneath, I struggle every moment. With new symptoms, frequently altered medication, alternate therapies, home remedies, et cetera.

Initially, I found some solace in reading about the ‘Covid Long Haulers’ and some universal symptoms, like the loss of smell and taste, brain fog, difficulty in word recall, muscle weakness and so on. But as people around me recovered at a decent pace, a feeling of isolation started to set in.

It irks to not be able to eat, drink or sleep properly, for months. As an inquisitive caregiver (and patient), I have always questioned doctors and researched for information online. All to acquire a better understanding and awareness.

Unfortunately, there is little material on the aftermath of Covid, when it comes to prolonged illnesses. There are enough news reports citing the rise or decline in the numbers on a daily, weekly, monthly basis. They also chart out comparisons between states and countries with respect to the intensity of infection, treatments and vaccine administration.

But as someone who is battling to accept the adverse effects of Covid on a daily basis, it’s important to know if I’m not alone. It’s important to know what are the recovery rates in varied age groups, does it get better in a few months or a year, do I need to see a specialist or simply let my body heal? First-hand accounts on social media prove helpful but there is a need to collate data from the infected, recovered and ailing patients across the globe.

The impact of Covid on mental health has been captured in statistical detail. We need similar detailed accounts of other invisible conditions, like gastrointestinal enteritis, ulcerative colitis, renal disorders or liver dysfunctions. Certain side-effects of Covid treatments like the loss of eyesight due to optic nerve damage have gone unreported.

Nearing two years of the outbreak, it’s time to stop the scaremongering and help people understand each other’s challenges so that ‘anxiety and trauma’ don’t replace ‘common cold and cough’ for the future generations.

Shruti Pushkarna is a former journalist who now works as a programmes and media specialist for the inclusion of persons with disabilities. Shruti writes for MxMIndia every other Thursday. Her views here are personal. She can be reached via Twitter at @shrutipushkarna

By Shruti Pushkarna

Happiness. Equality. Anxiety. Compassion. Empathy. Trauma. Sensitivity. Embrace. Frenzy. Love.

When I sat down to write this piece, my state of mind threw up these words. Growing up or ‘maturing’, as we call it, teaches us to filter our words, sentences and even emotions. Very often to suit others or portray a better version of ourselves. Does it mean that we are trying to hide the ‘real’ us? Or does it mean that the world is obsessed with certain perceptions of ‘you’ and ‘me’, and we simply have to live up to those?

Are we being judged? Or we judging all along? Or is it both?

Human beings are a strange heterogenous mix. The word ‘complex’ perhaps comes close to explaining our kind. Studies in psychology aver that each individual is different in more ways than one.

And yet we put people through our homogeneous lens, expecting them to fit our definition of ‘normal’, one that we are ready to ‘accept’.

Just the other day, I was reading a blog by a hearing-impaired person who grew up thinking there was something so wrong with him, that he kept hiding his disability. His (mis)understanding emanated from the horror films he watched as a kid. The villain was always a strange looking person, with peculiar behaviour that distinguished him from the rest of the crowd. This kid grew up aligning himself to this ‘incongruous’ character used to bring out fear and panic in the viewers’ psyche.

Internalisation of ideas and emotions. That’s the next roadblock. In accepting who ‘we’ are and consequently colouring our perception of others.

So, what is the point of this lengthy prologue?

Through this series on ‘Media and Disability’, I have consistently addressed the issues around stereotypes and misconceptions that push the disabled population to the fringes, outside the so-called ‘inner circles’ of mainstream society.

But I am beginning to wonder whether this pattern of ‘othering’ is limited to disability. The past year-and-a-half, ridden with Covid and its aftermath, has brought out new sides of people. Some good, some not so great. But revealing, in terms of ideology and life philosophy. Come to think of it, experiences during the pandemic have altered people’s beliefs dramatically.

In the first lockdown of 2020, I recall individuals and organizations coming together to help those in need. So many families took it upon themselves to cook and serve meals to the elderly, poor and other vulnerable groups. With human noises slowly abating, nature’s inherent music came to life, giving us glimpses of a utopia of sorts. A world where people stopped to think who lives next door, upstairs or in the house across the street.

News coverage and social media sensitised citizens about the plight of migrant labourers, students’ struggles with online tests and classes, financial predicament of breadwinners after salary cuts, challenges of mothers working from home and to some extent, difficulties unleashed by social distancing for persons with disabilities dependent on caregivers.

For a little while, we cared. And then, as our lives switched into new ‘gears of normalcy’, old habits resurfaced. As soon as the lockdown rules eased, masks came sliding down. Shopping plazas were crowded again. Fake negative test reports circulated as tourists populated hill stations and holiday resorts. In short, we ceased to care about another individual whose well-being could be compromised because of our choices.

Barriers in inclusion and access for the disabled are also fueled by a similar indifference towards the needs of another. Actually, towards a whole section of the population that is conveniently ‘invisible’ to the majority.

The launch of so many new mobile applications and online services has made life easier. Business, shopping, entertainment and education, all work through a digital interface today. How many of these innovative solutions are developed considering user requirements of persons with disabilities?

There is no dearth of tech gurus in the media today. Also, everybody and their uncle are tech genii on social media. Yet we know so little about how technology can enable a person with vision impairment to work on the computer, or a deaf-blind person to use a smartphone to communicate. Millions of disabled folks can live and function independently if technology companies target them as part of their native user base.

I hear the phrase ‘paradigm shift’ a lot in the context of changing mindsets towards persons with disabilities. The fatal virus has definitely given us hope that a paradigm shift is possible. Whether we need another pandemic for that, I leave it to you to decipher.

Shruti Pushkarna is a former journalist who now works as a programmes and media specialist for the inclusion of persons with disabilities. Shruti writes for MxMIndia every other Thursday. Her views here are personal. She can be reached via Twitter at @shrutipushkarna

By Shruti Pushkarna

‘Accessibility’ and ‘Inclusion’ are the two intrinsic terms in the disability space. Prime Minister Narendra Modi popularized these with the launch of ‘Accessible India’ or ‘Sugamya Bharat’ in December 2015. It’s a pity that the implementing agencies have missed the several deadlines to make the physical and digital world accessible for all citizens.

The media is an important stakeholder and influencer when it comes to advocating for an attitudinal as well as on-ground change. And the media is constituted by people like you and me. It’s important that we get the basics right, and understand how the lack of access can impact a person with disability in different aspects of daily living.

I spoke to a visually impaired lawyer who currently works as a Senior Resident Fellow with the Vidhi Centre for Legal Policy. Rahul Bajaj was born with an eye condition called Leber Congenital Amaurosis (LCA), which is characterised by malfunctioning retina. Despite all the challenges, Rahul acquired a law degree from the University of Nagpur, bagged the Rhodes scholarship and pursue his postgraduation at Oxford. Before joining Vidhi, he also worked with a Supreme Court judge.

Question: What does accessibility mean?

Answer: Persons with Disabilities (PwDs) access technology in a different way compared to their able-bodied counterparts. For instance, someone who can see, can read out from looking at the screen. But a blind person accesses text on the computer screen by using screen reading software. The software converts text into speech, speaking out all that is there on the screen. Unfortunately, not all platforms are designed to be used in that (accessible) way, not all websites can be read by the screen reader. Accessibility is just making sure that websites and apps are disabled friendly.

Question: Accessibility means different things for people with different types of disabilities. You are talking about audio being an essential cue for a person with vision impairment. Obviously, that is not relevant to the Deaf. Can you cite some examples from your daily life that have been solved by technology?

Answer: Let’s start with the basics. I wake up in the morning, I want to check what the time is. I want to check my appointments for the day. I have an iPhone, without which I would have to write these in a diary, or print, both of which are not accessible to a blind person. But the screen reader on my iPhone reads out those details to me easily. Once I sit down to work, I have to read a document that my junior has prepared, and give them my feedback. If they brought it to me in print, I won’t be able to give proper feedback, perhaps something just verbally. But because I have technology access, I can use track changes and comments.

Question: Now can you share three such examples where technology exists as a solution and yet you encounter accessibility challenges.

Answer: I need to read a government report in order to figure out what recommendation they have made on a particular point, in order to implement that through appropriate legislation. Now this report is an image-based PDF which means, the whole PDF comes up as an image. It’s not text-based searchable PDF. So, when I open Adobe Reader with my screen reader, it says empty document. Then I have to use what is called Optical Character Recognition (OCR) technology to be able to extract text from that document and then read it. Then also it’s about 80% accurate, so I have to get someone’s help to figure out the remaining 20%. And every word matters in the legal profession. Let’s say I want to conduct some legal research on a certain point. If the website is not laid out properly for the screen reader user, (with images and buttons properly labeled) then I can’t do it myself. A third example would be, if I want to watch the India-South Africa one day match. People watch it on the Hotstar app but for me it is inaccessible because of the bad design. So even though there is technology, the lack of accessibility shuts me out from that service.

Question: Can you give us a brief overview of how a blind person accesses his or her smartphone?

Answer: They do that using a screen reader. So nowadays, a lot of smartphones come with built in screen reading technology. The iPhone comes with something called VoiceOver. An Android phone comes with something called Talkback. And these software applications speak out the content on the screen. So, for instance, if I am an iPhone user, and I want to open a WhatsApp message, I will be able to go from one icon to the other by tapping on different places on the screen, and it will tell me what is under my finger. Now when it tells me that WhatsApp is under my finger, then I’ll double tap it, where it opens the app, and then the messages open up. Basically, instead of tapping anything once, which is what a sighted person does, I would have to tap it twice. Once just to know what is under my finger and twice to activate that icon. And then similarly, for all other things, the gestures are a little different. Your experience of interacting with the screen is mediated by a screen reader.

Question: Has Covid made the accessibility barrier even more prominent?

Answer: Yes and no. Yes, because it is true that we have become more reliant on technology. And therefore, it’s important now more than ever, that platforms be accessible to the disabled for doing all kinds of things, which we were traditionally not doing using technology. From attending meetings, to classes, to homework, to exams, to dating, to watching movies. But, on the other hand, in some sense, also, no, because it’s not like the physical world was very accessible to us to begin with. I would say that perhaps technology enabled access to the world has actually made things a little bit better. For instance, now when I go to a restaurant, I can access the menu using the QR code functionality, which wasn’t designed with accessibility in mind. But it was designed for people not to be exposed to a physical menu. What is to other people just an inconvenience or an annoyance, to me, it makes that menu which was until now inaccessible, more accessible.

How can individuals, companies, government and the media ensure accessibility on their offerings? What does it mean when we say XYZ app or website is inaccessible? Does it involve a huge cost in terms of human resource and money to design inclusive products and services? What happens if service providers don’t comply?

Next fortnight, we will get into the specifics of web accessibility guidelines, legal implications, and a new initiative against some of the most commonly used mobile apps and websites. The list includes banking, finance, delivery, dating, health, news, entertainment and so on.

Shruti Pushkarna is a former journalist who now works as a programmes and media specialist for the inclusion of persons with disabilities. Shruti writes for MxMIndia every other Thursday. Her views here are personal. She can be reached via Twitter at @shrutipushkarna