Tag: shruti pushkarna

  • Shruti Pushkarna: Does literature exclude or misrepresent children with disabilities?

    Shruti PushkarnaBy Shruti Pushkarna

     

    In the past, I have talked about disability representation in films, television and news media. If I look back to my childhood, I was most influenced by the books I read. Apart from entertaining, the fictional characters from comics and novels colored my thoughts and behaviour. At times I tried to emulate their traits, imagining myself as part of the plot.

     

    My first and perhaps only memory of a character with disability is Klara from the novel Heidi. She was a wealthy but lonely and frail girl who is assumed to be invalid because she cannot walk. In the end, she is miraculously cured, stands up and starts walking. Somewhere it may have reinforced a medical definition of disability in children’s minds, the idea that Klara wasn’t normal and she had o be made whole and healthy again.

     

    Often discourses on disability inclusion emphasize on the need to sensitize children from an early age. One of the understated advantages of inclusive education is peer acceptance and normalizing the differences in a commonly inhabited environment.

     

    According to a UNICEF report, there are around 240 million children with disabilities globally, which means, one in ten children live with disability. As per Census 2011, out of the 26.8 million persons with disabilities, 2.04 million are children with disabilities. And 75% of them don’t attend schools.

     

    They are physically absent. Children’s books with disabled characters as protagonists can generate empathy in young readers, who otherwise have little exposure and understanding of disability.

     

    I spoke with Aniruddha Sen Gupta, a writer and creator of the Fundoo #4 series, curious as to why he chose to make one of his characters hearing impaired. Aniruddha enjoyed writing from an early age but pursued the interest seriously once he moved from Delhi to Goa. He believes that creative content needs to be inclusive. The medium needs to be the message, and inclusivity needs to be built into the storyline itself.

     

    When and how did you start writing books for children?

    The first Fundoo #4 book, Mystery of MindNet came out in 2008 and the second one, Lake of Betrayal came out in 2012. But the books weren’t the first things that happened with these characters. We created these characters for an educational CD ROM with Eklavya Education Foundation on the subject of measurements. They wanted to create stuff which was cross discipline, like in Maths or Physics, and measurement seemed like something that crosses different subject areas. So, we created these characters then, at that time Mani wasn’t conceived to be hearing impaired. Later we started using them for different kinds of projects, the books also came out of that. There was some talk with Cartoon Network also, because we were conceiving Fundoo #4 as a multimedia franchise of sorts.

     

    What was your initial tryst with disability? How did you get sensitised towards it?

    Salil Chaturvedi (friend and colleague who is a paraplegic) is the main factor in my understanding of it. We are very close friends, almost like brothers. Most of my understanding comes from interacting with him, and also from working with disability organizations. My mother was almost deaf in one ear for most of her life, it’s been there in my life but I never thought along those lines.

     

    At what point did Mani become a character with disability?

    When I wrote the books. We thought let’s have one of the characters with some form of disability, and deafness worked well because we could use it in different ways. The character copes with it and uses the disability as a strength. For example, Mani has the ability to read conversations across a room, that’s the kind of secret ability which helps them in solving mysteries.

     

    How would you define Mani, who is he?

    Mani is a lot like me. He likes to have a good time, he uses humour in dealing with the world in many ways. The only difference is that I don’t have a hearing impairment. That is just one element of it. I am not able to deal with certain kinds of everyday issues. If something involves going to an office, I usually get my wife to do it. That characteristic of mine is sort of a limitation. I see Mani in the same light. He can’t hear, that’s it. His mind is not any different just because he can’t hear. He is a bright kid.

     

    And how did you come about choosing deafness as his disability?

    Sign language is almost like a code, you use certain things which no one else around you will know. That’s another aspect of Mani’s superpower, all four of them can talk to each other without people knowing what they are saying to each other. When the book was launched, we went to schools for events (promotions) and we had a few routine exercises as part of the book event. One of these activities was to introduce kids to the concept of sign language. We would show them some basic signs, Indian Sign Language alphabets et cetera. At the end of the event we would get them to applause like deaf people. The students and teachers both appreciated this exercise.

     

    In your book, the disabled character and his friends are referred to as ‘misfits’ and ‘fellow outcasts’. The terminology has an ableist ring to it, and that’s probably how the average reader perceives them. What are your views on the portrayal of disability in literature, in terms of stereotypes?

    There are two things to this, one is of course, however we may think about it, the fact is that society looks at them in a certain way. So just to reflect the reality of a situation, it’s good to bring that in. Through the course of the book, through the course of what happens to the kids, how they do things, you realise they are not misfits. They are not outcasts, in fact they are probably gifted. It develops a different sort of empathy in the readers for the kids, in the sense that you understand that these words don’t mean what you think they mean. They are words which are thrust upon people for no reason and people have their own abilities and ways of doing things. Various people are disabled in various ways, it doesn’t have to be necessarily a physical or a mental disability. There are things that you can do and things you can’t. And that’s the case here also. And that’s what we are saying through the books, disability doesn’t have to be looked at differently. A person with disability doesn’t have to be discriminated against, based on that.

     

    Usually disabled characters are used to generate fear, pathos, hatred et cetera. In trying to depict disability with a fresh perspective, you are up against all such (mis)representations. Was it challenging to beat that image? How has the response been?

    One of the problems I feel in terms of a book about the subject or with characters who are disabled, often they tend to become preachy. I feel to get the message across, the storyline and the characters have to be compelling. That’s what you notice about the Harry Potter books as well. The plot is gripping and all other social messaging becomes apparent later. Children’s books which preach too much won’t work. I tried to keep the setting such so that the kids will relate to it easily, like adventure and mystery. And then bring the issues as a secondary layer. The reactions in schools were positive, with kids talking about someone they know of being disabled at the end of the sessions. I felt that maybe a lightbulb had gone off in their heads.

     

    Literature is said to be an agent of change, capable of influencing attitudes and behaviour. What is the kind of impact you think books and other media can have?

    My view is that the first area of impact needs to be in the minds of people who are not disabled. That’s what the books or other forms of media that we are working on, can do. There are several other factors in terms of including people with disabilities in education or employment. It helps to create a picture that prevents people from discriminating. That’s where our main focus is. To make sure people who are not exposed to disability, get an understanding of what it is and how you bring people with disabilities into the mainstream. Just changing mindsets more than anything else.

     

  • Shruti Pushkarna: Turning 50: From Preachy to Pragmatic

    Shruti PushkarnaBy Shruti Pushkarna

     

    On December 3, 2019, International Day of Persons with Disability, I penned down my nascent thoughts on what the media must do in terms of disability representation and inclusion. Little did I know that it was the germination of a fortnightly series on ‘Media and Disability’.

     

    As I wrote the next couple of columns, issues and ideas surfaced. It seemed an obvious and an imperative move to carry on writing, challenging perceptions, questioning people (authorities), raising my voice for India’s largest invisible minority.

     

    The intent was clear. Urge the media to change the societal perception (read misconception), by creating awareness, broadening the scope of imagination, normalising the discourse on disability and recognising the potential of persons with disability.

     

    This is my 50th attempt at shifting the focus to a ‘person first’ narrative, consciously steering away from either a disparaging or a heroic portrayal. Hundred weeks. Fifty columns. Phew!

     

    Although an enriching journey, I must confess it wasn’t easy. I had my fair share of vindicating, glorifying and swimming upstream moments. But it’s been fulfilling nonetheless. As I revisit my past writings, I can chart the growth of the ‘disability advocate’ in me. Exploring different aspects of inclusion, gaining varied perspectives, treading unchartered territory, acknowledging influences, I have learnt to observe, absorb and respect, before I discern, judge or dismiss.

     

    Initially, the columns called out the media on misrepresentation, stereotyping and shallow coverage of a community that constitutes 15 per cent of the global population. As the series was building a case for inclusion of disability in the mainstream agenda, the Covid pandemic struck.

     

    Locked down in their spaces, every citizen experienced isolation first-hand. Being cut off from ‘normal’ modes of functioning was no longer exclusive to the disabled folk. This seemed like a great opportunity for cultivating empathy in an otherwise indifferent world.

     

    This also appeared to be a great context for introducing solutions. Moving from a preachy, finger pointing mode to a more constructive approach. In the post Covid era where virtual replaced the physical, it was time to appreciate the empowering ability of technology for persons with disabilities. Through the column, the need for accessibility in all spheres, especially digital, was explained and emphasized. And champions of change were celebrated.

     

    Personally, I gained more than what I set out to achieve. I was able to align my sensitivity towards disability with my journalistic experiences, churning out a realistic ask. Seeking accessible content, dignified reportage, outlying stereotypes and building a diverse workforce.

     

    As for the experience of curating content, identifying patterns and researching statistics, I enjoyed it all. Some pieces were obviously more memorable, for the responses and reactions they garnered.

     

    The cringeworthy display on television news channels, of Prime Minister Modi laying down the foundation stone of the Ayodhya Ram temple, riled me (and my TV production sensibility). The oversight of accessibility in a building that was yet to come up, led to a mince-no-words attack on the media and the powers that be. It led to some people, bhakts included, recognising the challenges a disabled, pregnant or a senior citizen could face visiting the site. (https://www.mxmindia.com/2020/08/ayodhya-ram-mandir-disabled-access/)

     

    American polity and media also contributed to my arguments against othering. The piece on Invisible Disabilities, inspired from the American legal drama series, Boston Legal was received well. Persons living with chronic illnesses and invisible disabilities face greater rejection by society as their conditions are not apparent. Unfortunately, even today our understanding of disability and access is limited to ramps and wheelchairs. Young Marissa’s self-portrait titled ‘Happy Girl’ challenging her inability to smile in the conventional sense, remains a personal favourite. (https://www.mxmindia.com/2020/09/shruti-pushkarna-invisible-disabilities-missing-from-any-discourse-on-disability/)

     

    US President Joe Biden’s swearing in ceremony was a trendsetter, presented with live captions, American Sign Language, audio description and other accessibility features on YouTube. The event featured speech and hearing impaired, 22-year-old poet laureate, Amanda Gorman flawlessly reciting her poem, ‘The Hill We Climb’. (https://www.mxmindia.com/2021/01/shruti-pushkarna-disabled-lives-matter-time-to-take-a-cue-from-america/)

     

    Then there was the piece applauding the fervent speech delivered by the first visually impaired Pakistan diplomat at the 76th UN General Assembly. A strong advocate of global peace, Saima Saleem made history by reading out her speech in braille at the international convention. (https://www.mxmindia.com/2021/10/shruti-pushkarna-a-fervent-spokesperson-first-disabled-after-has-the-media-finally-got-it-right/)

     

    Finally, there was the explosive performance by India’s Paralympians. The historical medal tally forced the average citizen and the media to nationally acknowledge Para sports.  (https://www.mxmindia.com/2021/09/shruti-pushkarna-can-the-historic-paralympic-medal-tally-alter-our-perception-of-disability/)

     

    The list goes on.

     

    Striding towards a utopia where diversity is no longer scorned at, in the past two years I have learnt to redefine my own idea of ‘normal’. Looking forward to bringing you a sharper, riper view on disability inclusion as the column turns a quinquagenarian!

     

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

     

     

  • It’s not funny! Mocking one’s disability for another’s hilarity

     

     

    By Shruti Pushkarna

     

    Shruti PushkarnaLaughter, they say, is the best medicine. Humour is also an equaliser of sorts, the jester can ridicule the prince and the pauper alike. Often what can’t be uttered directly, is passed off easily, garbed in satire. We see that a lot these days, in the form of standup comedy, where political powers or specific groups are targeted in jokes. Gaining popularity in both online and offline avatars, standup comedy is increasingly becoming a respectable career choice for many.

     

    But what happens when the joke is directed at someone vulnerable or marginalised?

    The other day, I came across a video clip in which an Indian comic, Abhishek Upmanyu incites laughter by mentioning physical disability. The joke is not only in bad taste, it makes no sense. I’m sure there is a larger context to his gig, but nothing justifies the sheer insensitivity.

     

     

    What is funny to someone, can be extremely hurtful to another. Growing up, I used to wear thick spectacles to school. That’s when we didn’t have the luxury of ordering high index (thin) glasses to meet one’s cosmetic needs. I was mercilessly derided by peers who called me ‘chaukhi’ which loosely translates to ‘four-eyed girl’. Some kids even hid my glasses, and rejoiced seeing me bump into furniture, trying to find my way around.

     

    While their laughter filled up the classroom and the corridors, it wasn’t funny for me.

     

    Because of intrinsic stereotyping in literature, cinema, television, advertisements et cetera, the business of ‘othering’ is assumed to be acceptable. It comes naturally to people, young kids included.

     

    It has been normalised to such an extent, that we use phrases and words without worrying about the implications. Common utterances include, ‘That joke is so lame’, ‘Why are you acting bipolar’, ‘Are you retarded’, ‘Can you dumb it down’ and so on.

     

    Another comedian, Neville Shah was slammed online for ridiculing persons with disabilities. Incidentally, this artist features on a popular OTT platform. In this particular clip, Shah mocks disability and reservation for the underprivileged sections of society.

     

    https://twitter.com/riteshjyotii/status/1393945614946164746?ref_src=twsrc%5Etfw%7Ctwcamp%5Etweetembed%7Ctwterm%5E1393945614946164746%7Ctwgr%5E%7Ctwcon%5Es1_&ref_url=https%3A%2F%2Fwww.idiva.com%2Fnews-opinion%2Fnews%2Fcomedian-neville-shah-criticised-for-casteist-remarks%2F18020195

     

    How can apathy towards a sizeable section of the population result in comic relief?

     

    Bollywood also has a history of portraying disabled people as farcical, oafish or villainous. Their physical disability is accompanied with a character distinction that puts them apart from the rest of the cast. Premnath plays the powerful villain, Sir Judas in the film Karz who is speech impaired. Shah Rukh Khan plays young Rahul in the film Darr, chasing Juhi Chawla with an abnormal passion. His unhealthy obsession is attributed to mental instability. Vivek Oberoi plays the villain, Kaal in Krrish 3 who is paralysed neck down.

     

    Buffoonery and disability also go hand in hand in Indian cinema. Tushar Kapoor is characterised by speech disability in the famous Golmaal series. The weird noises made by his character have made him all the more endearing to the audience. Three lead actors, Akshay Kumar, Riteish Deshmukh and Abhishek Bachchan pretend to be disabled, in the slapstick comedy Housefull 3. One character plays a wheelchair-bound cripple, another pretends to be blind, and the third dons the garb of a mute man, only to generate some silly laughs.

     

    However, mocking disability is not limited to the Indian subcontinent. Several comedians across the world have indulged in thoughtless mirth at the expense of persons with disability.

     

    A Canadian comedian, Mike Ward mocked a disabled singer, Jeremy Gabriel who became a celebrity as a young boy. Known as ‘Petit Jeremy’, Gabriel has Treacher Collins Syndrome, a genetic disorder that affects facial bone structure. In his case it caused severe deafness. His family filed a human rights complaint, which was challenged and won by Ward on grounds of free speech.

     

    In 2018, advocacy groups, individuals and parents of children with Down Syndrome vociferously condemned comedian Tom Segura’s repeated usage of ‘retarded’ in the Netflix special ‘Disgraceful’.

     

    In the American sitcom ‘Big Bang Theory’, Stuart Bloom who is the owner of a comic bookstore, struggles with physical as well as mental health issues. He is made the butt of jokes, used for cheap comedy and easy one-liners.

     

    In the process of entertaining a majority, comedians and writers indulge in ‘otherising’ a minority and reinforcing prejudices in the societal mindset. Should the media be perpetuating such stereotypes?

     

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

     

  • Negotiating their way to compliance

    An image of a visually impaired girl with an adult sitting in front of computer

     

     

    By Shruti Pushkarna

     

    Shruti PushkarnaIn my last piece, Building a Case for Access in an Exceedingly Digital World, visually impaired professional, Rahul Bajaj explained the basics of accessibility, how technology enables disabled people to function independently and how inaccessible products and services exclude them from the mainstream of things.

     

    The disabled community is one of the largest minorities, as 15% of the global population lives with some form of disability. They have similar needs, aspirations and interests. Their limitations simply change the way they access facilities. In an increasingly digital post-Covid world, food delivery, travel bookings, banking, health appointments, entertainment, et cetera can all happen easily online. But what about persons with disability? Are mobile apps and websites just a click away for them as well?

    Unfortunately, not.

    Lainey Feingold
    Lainey Feingold

    Rahul Bajaj along with a couple of other legal experts who are also visually impaired, has started an initiative against inaccessible websites and mobile applications. Interestingly, in this battle for inclusion, the legal route is their last option. They are applying a method called ‘structured negotiation’, a concept popularised by an American Disability Rights lawyer, Lainey Feingold. An alternative to lawsuits, Lainey proposes a meaningful dialogue with the service provider, to get them to become accessible, explaining the issues and encouraging them to do something about it. The method assumes that inaccessibility is a fallout of ignorance rather than a deliberate attempt to exclude.

    In a candid conversation, Rahul shares certain issues with commonly used mobile and web platforms, accessibility guidelines and the need to advocate for equal rights.

     

    Rahul BajajQuestion: What is this new initiative that you have taken up against inaccessible websites and apps?

    Answer: I realised there is massive inaccessibility for the disabled in the digital world we inhabit. From making payments, to ordering groceries, making medical appointments, everything is either out of reach or very difficult to do independently. And if these were in existence in the physical world, I might still understand that it requires a lot of retrofitting as old buildings were not designed with accessibility needs in mind. But it is very painful that in the digital world, where there is absolutely no reason for it to be inaccessible to anyone, there are so many barriers. Mission Accessibility seeks to constructively work with service providers of apps and websites to get them to become more accessible. And we try to do this through a variety of ways. One approach is to identify the users of a particular inaccessible platform, and share a template to get them to write to the service provider. That is a way of empowering individuals to advocate for themselves. Another approach is systemic in nature where the idea is to create a more conducive environment at the systemic level, to ensure that the service providers are made aware of their obligation. That can be done by involving the government or regulators like, SEBI, RBI, TRAI, under whose control the service providers fall in. Third approach is some sort of judicial intervention against service providers who aren’t complying. The basic idea is to change things.

     

    Question: You must have received several responses to your request, seeking details about people’s experiences of inaccessible apps and website?

    Answer: We sent out an email asking people for the names of such platforms that we should work on. The response was overwhelming, we got as many as 40 to 42 names. And we got a whole host of service providers, from food, to groceries to dating to academic writing and referencing, to medical appointments, everything. Some people said that this is something they’ve always wanted to do, to take on the issue of accessibility in a more systemic fashion.

     

    Question: Can you name some of the apps and websites that came up in the responses? I’m curious if there are any media websites in the list?

    Answer: There are, definitely. In terms of more generally what it includes, Dunzo for groceries, the common app people use for home delivery. Practo to meet doctors online. Hotstar, which is an OTT provider, and Rapido for booking cabs and bikes online. Dating apps like Bumble and Tinder. There are a lot of media apps that came up, including NDTV, Moneycontrol, Economic Times, Times of India, all of these have some or the other issue on their platform. For instance, the iOS NDTV app sends you a notification when there is breaking news or some major update. When you double tap that, or when you open that with VoiceOver on the iPhone, it doesn’t actually take you to the article. It takes me to a random advertisement on the app rather than to the actual article that I had opened up.

    Question: You mentioned that you access your daily dose of news on the YouTube programme put out by Faye D’souza. Are there any other examples of inaccessible news websites?

    Answer: One other that I really struggle with is New Indian Express. Whenever you open an article, it keeps telling you other things. And that must be because there is some sort of a visual, these are dynamic websites, where the content is constantly switching from one thing to the other. So, either it will be an ad or some flashing stories, which come in the way of smoothly reading the article from start to finish. Even with Moneycontrol, there is a similar problem. The screen reader jumps focus because people don’t design the website properly. Nobody’s saying that you do away with visually appealing elements. Because at the end of the day, that may be a strategic call. But at the same time, I’m sure there must be ways to retain those visual features and yet remain accessible to the disabled. People just don’t think about it because they don’t have accessibility experts in their midst. Also, they don’t anticipate disabled users visiting their platform.

     

    Question: Speaking of design, can you tell us about the W3C guidelines which are in place to ensure accessibility?

    Answer: The World Wide Web Consortium has what are called the Web Content Accessibility Guidelines or WCAG. And the latest version of that is called 2.1 AA. They actually prescribe in granular detail what norms you have to comply with in order for something to be accessible. So, if you want to know, what you must specifically do to make your platform disabled friendly, then that is really the tool that you need to use. Like having headings in place, making sure that buttons are clearly labeled, making sure that you don’t use CAPTCHA without either an audio or text substitute, or both ideally, for the deafblind also.

     

    Question: What are the legal remedies in terms of non-compliance? What does the law say on it?

    Answer: Under the 2016 Rights of Persons with Disabilities Act, there is an obligation to make your platform accessible, and all service providers were required to do this by June 2019. The deadline to do that has already expired. Now, the question arises, what do you do about it? Section 89 says that any breach of the Act shall be punished with a fine up to five lakh rupees. There is a possibility of financial penalty being imposed on those contravening the Act, so you would basically need to go to the Chief Commissioner for Persons with Disabilities in the first instance, or the State Commissioner. If that doesn’t work, then you go to a High court and to the Supreme Court.

     

    Question: OTT platforms are the trending thing now. We’ve seen with Covid and the lockdown, most of us were hooked to Netflix, Amazon Prime, Sony Liv, Voot or Hotstar. Are these OTT platforms accessible to a blind person? By the way, a lot of people think that blind people don’t watch films or TV. So why don’t you start by busting that myth…

    Answer: While it’s true that movies are primarily visually oriented, there are a couple of ways in which someone who’s blind can also have a really enjoyable experience while watching them. One is by listening to the audio components of it, the dialogue, the music, all the background noises. And the second, perhaps the more important aspect is audio description, which is where the OTT providers’ role comes into play. Audio description is basically where whatever is happening on the screen is being described by someone for the benefit of a blind person. Like Meg is a white woman who has brown hair and black eyes; we see her standing in her living room; or Meg drives in her car, and goes to the grocery store. And this is something Netflix has really pushed the frontiers on. A large majority of their content, and I hope it stays this way, is actually audio described, even in Hindi. Amazon Prime is also good, but it doesn’t have as much audio description. But the platform itself is definitely accessible. However, Hotstar is the most disappointing of the lot, the platform is inaccessible, what to speak of audio description. The app is designed in a very bad way, different controls are jumbled up. Buttons are unlabeled, you can’t really find things on your own. Many issues are there, but we are working with them. Actually, we sent them a legal notice and after that they began talking to us. They have in fact asked us to conduct a sensitization session for their engineers.

     

    Question: Let’s talk about the inaccessible content in terms of a sporting event on TV. Or national news coverage on Elections or Union Budget which is accompanied with a lot of graphics. How do these visual elements affect the visually impaired person’s TV watching experience?

    Answer: That is definitely a big issue. Sometimes the ad comes even before they have told you the score at the end of an over, and you can’t read the score on the screen. Same with other graphic content. The way to resolve that is to mainstream audio description. It benefits everyone because it will generate more employment. It will also generate more revenue because at the end of the day, you will tap into more users who are not seeing the platform/channel currently. I was interviewed on this Good News programme where the news team portrayed me in a very positive inspirational light. That doesn’t help me. This was part of the India Today network, if Aaj Tak gives me audio description or subtitles, that’s what will truly change something. To the folk in media I would say, bat for accessibility in whatever shape or form you can. Some people might say that this is a call to be taken up by people higher up in the organization. That’s not true. You can connect relevant people, your product design team, your engineers, your marketing people who run your website, and so on, with people with disabilities and open up that channel of communication. It’s not okay just to be outraged by this. See what you can actually do in your everyday life to make things a little better.

     

    Rahul Bajaj works as a Senior Resident Fellow with the Vidhi Centre for Legal Policy. A Rhodes scholar, he also worked with a Supreme Court judge before joining Vidhi.

     

  • Shruti Pushkarna: Building a Case for Access in an Exceedingly Digital World

    Shruti PushkarnaBy 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

     

  • Shruti Pushkarna: Does disability make social engagements less gratifying?

    By Shruti Pushkarna

     

    Shruti PushkarnaI personally love the winter season in Delhi. December and January are my favourite months, as long as the sun keeps shining. I enjoy stepping out after layering up adequately. But winter rain can be a downer.  Moist and gray outside, chilly inside, it’s hard to feel anything but gloom.

     

    Needless to say, it’s even more discomfiting to be locked in because of the rampant virus. The lack of choice, of going out to work, shop or meet someone, puts us under stress, unconsciously.

     

    In such harsh times, the idea of catching up with a friend over a steaming cup of tea or cocoa is exhilarating.  It’s the easiest, most casual thing for us to do. Call a pal, sibling or cousin, pick a café and chill. I have a list of catch ups planned once the Covid numbers start abating.

     

    Social engagements are intrinsic to human beings. A sonorous fact of the post Covid times. When we speak of inclusion, whether it’s gender, caste or disability, the conversations are mostly centred around empowerment through employment.

     

    We (organisations, governments, individuals) often underscore the need for social integration. Apart from the sense of dignity that comes with economic self-reliance, persons with disabilities (just like you and me) aspire for societal acceptance.

     

    Let’s take five commonplace scenarios which offer some form of gratification or liberation to us. And then picture if the 2.68 crore disabled population and 13.8 crore elderly (who may live with temporary disability or limitations in mobility, reading et cetera) feel the same way.

     

    1. As a woman and a working professional, driving gives me a sense of freedom. The fact that I don’t have to depend on anyone to shuttle me back and forth, or worry about hailing a taxi and contracting the virulent Omicron, is liberating. You can argue that disabled people cannot drive with their physical limitations. True. But there are ample solutions in the market. Here’s a picture of a paraplegic who drives himself around in a modified hand-controlled car.

     

    2. Catching the latest releases in a theatre nearby. And topping up the screening experience with popcorn and soda. How many wheelchair users have you encountered in a cinema hall? Even though some theatres have special access to a few seats. Did you know that a blind person relies on audio description to follow the visual narrative? A lot of OTT content on popular platforms like Amazon and Netflix now have audio described productions. Even if the disabled chap were to make it to the movies, can she or he really make an independent trip to the snack bar?

     

    3. Going out on a lunch date involves picking your favourite cuisine and the right ambience. Not so easy for someone with a disability, which often prevents them from even planning one. They have to ensure if the place is physically accessible for a wheelchair or a crutch or a walker. This includes entry/exit points, washrooms and seating area. Have you had to worry about a braille menu or a sign language interpreter for your meals?

     

    4. Shopping for clothes, shoes, bags or household stuff can be cathartic. But picking up something for yourself or a loved one is not easy if the shopping plaza isn’t accessible. Again, access is not defined in terms of physical navigation alone. The entire shopping experience has to be disabled friendly, including human assistance, secure transactions, quiet spaces for someone on the autism spectrum, and so on. Icing on the cake would be clothes and accessories designed for persons with disabilities. Online shopping does take care of some of these issues, except it’s not as delightful for those who enjoy the old school touch and feel version. A couple of years ago, Future Group’s Big Bazaar took a step towards making shopping inclusive and accessible.

     

    5. What better way of winding down in bed with an enjoyable book. I restrain myself from entering bookshops because of the urge to buy every interesting title. But if I want it, I can simply pick it off the shelf and start reading. Books have a way of expanding our imagination by transporting us into different settings. Can visually impaired people get a taste of something they will never see, by just reading about it? Yes of course. Except they access books in audio formats. Incidentally, India was the first nation to ratify the Marrakesh Treaty, an international legal instrument which makes it easier for blind and other print disabled people to access works protected by copyright. Yet, I know so many who struggle to find accessible books for their reading pleasure.

     

    In the last few years, I have made a lot of new friends who live with some form of disability. They share my urge to eat out, travel, gossip and splurge. Basic social engagements reiterate the ‘normal’, giving a chance to form connections without prejudice.

     

    Unfortunately, media portrayals hardly focus on the scope of collective light-hearted human indulgences, irrespective of (dis)abilities. Either disability is ridiculed, or treated too gravely, making it abnormal in some way.

     

  • Equality & Inclusion: The Year that Wasn’t

     

     

    By Shruti Pushkarna

     

    Shruti PushkarnaThis time last year, there was hope that the new year would be somewhat better than the ‘lockdown’ year. People thought things would change miraculously at the dawn of January 1, 2021. Sadly, it was only meant to get worse. India was hit by a worse second wave, losing numerous lives to the deadly virus.

     

    This year there isn’t any pretense. Going by the latest news reports of rising coronavirus cases and the new Omicron variant infecting people at a ghastly rate, so far there are no indications of a better 2022.

     

    Sigh.

     

    Looking at the year gone by, it seems as if once again we are standing at the helm of where things began. In February 2021, fears of another wave were rising despite the accelerated vaccination drives across the country. And here are we are again. A third wave now.

     

    Ending and starting on a similar (dreary) note, seems like this year was a total washout. Perhaps best classified as ‘The Year That Wasn’t’.

     

    The Top 10 words that defined 2021 were:

     

    1. Vaxxed- Social media was viral with selfies after taking first and second jabs

    2. Oxygen- or the lack of it! It was a battle for air at the end of the day

    3. Anti-viral- Drugs like Fabiflu were going off the market for thousands of rupees. Little did we know if they helped at all

    4. Plasma therapy- Donors were being lined up by families in the hope that patients could benefit from a treatment which was eventually scrapped by medical experts

    5. Variant- Delta was the D-word, if you had it, you were doomed

    6. HDU- Patients recited horror stories from their time inside a High Dependency Unit in hospitals

    7. Black fungus- Mucormycosis, a serious fungal infection that was presumably a fallout of steroid overdose

    8. Medrol- Hardly anyone with a severe Covid infection went without a prescription of this steroid. Many developed serious conditions from overuse

    9. Anti-vaxxers- Those who haven’t yet taken the first shot, at a time when boosters are due

    10. Mass graves- The summer of 2021 witnessed thousands of bodies cremated/buried without a proper closure for their family members

     

    It was a year of survival. Not just battling death and illness through most quarters but also surviving insensitivity, bordering on apathy. Personally, I struggled with my health, job and emotional sanity. It was tough to be playing against so many odds. But as they say, ‘what doesn’t kill you makes you stronger’. I learned to sail through, it was the greatest test in resilience.

     

    A trait that so far, I only observed in the people I work with. Persons with disabilities fight with several adversities, both physical and mental, to survive in a society which is bereft of equality. And yet they sustain and thrive somehow. Since the start of the pandemic, the general population has been given lessons in adjustment, patience, survival, accommodation, things that come naturally to the disabled community. With tables being turned on the majority, one hoped that the world would become more empathetic. Especially when an absolute cliché, ‘one when door closes another opens’, became a personal reality for many.

     

    Despite aligning our ways of living to a ‘new normal’ which had immense potential to be more inclusive, the disabled population remained invisible for the most part.

     

    Vaccination drives sidelined the vulnerable groups, mindless of their specific needs and challenges.

     

    Workplaces resumed operations without considering the travelling issues faced by persons with disabilities, in a socially distanced scenario.

     

    Olympic champions were cheered and Paralympians merely made it to the national headlines, despite a historic tally.

     

    Many Covid survivors experienced invisible disabilities and chronic conditions, and yet no sign of empathy for the 15 per cent global population.

     

    Collectively bracing through a year ridden with morbidities and economic slumps, sections of society failed to negate their differences. Instead, we saw a dark, selfish side of human existence. From hoarding medicines and essentials, to fighting for hospital beds and oxygen, people were erroneously engaged in self-care. Even in death, they were seen bargaining for a ‘better’ spot for incineration. If sickness of such magnitude didn’t help us equate our fears and troubles, one wonders what will.

     

    Recently, I started reading this book on honing the art of storytelling. Before getting down to the tips and techniques, the author talks about the power of narrating stories with respect to breaking down feelings, sharing pain and trivializing the whole ‘victim’ psychology. Just by a mere act of filtering emotions through words, we can step aside from the problem that seems so big in our heads, otherwise. Working in the disability sector, I have realized the need to focus on solutions rather than aggrandising the problems.

     

    The preamble also got me thinking of what the Dalai Lama once said, “The planet desperately needs more peacemakers, healers, restorers, storytellers and lovers of all kinds.”

     

    Going into another year of possible lockdown, disease and misery, we need to be mindful of equal opportunities and protection for all, included the disabled. Let the defining words of 2022 be, ‘equity, equality, equanimity’.

     

    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

     

  • World Disability Day: Is it time to question the country’s readiness on disability-friendly policies?

     

     

    By Shruti Pushkarna

     

    Shruti PushkarnaTwo years ago, on December 3, I wrote my first column with the intent of initiating a dialogue on ‘disability’. Why did I feel the need to do so? Primarily because disability or the needs of the disabled population have never been part of our mainstream agenda. Raising awareness, I thought, would be the first logical step towards reducing the ignorance levels.

     

    Second, the conversations on disability in the media focused on romanticised tales of role models, generating sympathy from the audience or worse, making them feel thankful for their able-bodied existence vis-à-vis someone who was paying off his or her karmic debt.

     

    I don’t know if my attempts at reinforcing the need to normalise disability, shifting the focus on abilities, and accepting the differences, has altered any mindsets. But if I have been able to make you pause and think even for a moment, I feel accomplished.

     

    And on the eve of International Day of Persons with Disabilities (IDPD), I renew my vow to keep at it. Keep advocating for an ‘inclusive’ world for all. Not only because it’s the right thing to do, and everyone deserves a chance to live independently with dignity. But also, because including 15 per cent of the global population will change the majority’s perspective towards life and situations.

     

    If you are wondering ‘how so’, believe you me, that’s been my biggest personal lesson. Disability is a condition that a person is either born with or acquires later in life. It’s a condition that results in limiting the person in some ways. The limitations, however, are a result of barriers in the physical (and virtual) environment as well as behavioural blockades.

     

    Learning to respect the differences stems from concentrating on the potential of people without fixating on what doesn’t ‘seem’ possible to us. For this to happen, ‘accessibility’ has to become a priority. Once persons with disabilities start participating and interacting with the mainstream, the walls in our heads will slowly start coming down.

     

    Let me break this down a bit. I worked as a television news producer some years ago. If I were to take up that job again, I can easily see a blind person scripting or voicing the show. I can also picture a speech impaired production assistant accompanying the crew on shoots, maintaining logs, holding up cue cards etc. A person with locomotor disability can very well be the go-to guy (or gal) for topical research.

     

    This is just one possible scenario emanating from my ‘limited’ understanding. Imagine the possibilities.

     

    If we can work on removing the obstacles and introducing solutions that enable persons with disabilities not only to enter or exit a space, but perform all the functions that are essential to that scenario, this column will become redundant.

     

    Why? Because first-hand interactions and experiences are the most effective ways to ‘sensitize’.

     

    Before you write me off as pedantic, here are some examples which reiterate the gaps in inclusion and speak of our (read society/government/corporates/policy-makers/media) indifference towards the disabled community.

     

    1. It’s 2021. And the Rights of Persons with Disabilities Act 2016 recognizes 21 types of disabilities. But our accessibility definition starts and ends with a wheelchair. So much so, that we force blind, deaf or speech impaired people into a wheelchair despite their ability to use their legs!

    2. Even wheelchair access is not implemented fully on the ground. Many places don’t have wheelchairs. If you bring one of your own, good luck pushing it through the narrow doors of rooms, toilets, shops, restaurants etc. And then there’s the ramps. You are sure to exercise your forearms pushing the wheelchair up and down the inconsistent and steep inclines.

    3. Where are the statistics on the disabled population? Forget gender, children, state or disability specific data, the latest count we have is from Census 2011 which is far from accurate. If we don’t know how many need access to services and spaces and in which geographies, what is the likelihood of catering to their needs?

    4. The United Nations theme for IDPD 2021 is “Leadership and participation of persons with disabilities toward an inclusive, accessible and sustainable post-Covid-19 world.” After the pandemic, a majority of our social and professional activities have moved online. But digital platforms including websites and mobile applications are not fully accessible to persons with disabilities. December 31stis the deadline for filing income tax returns and the government’s official portal is ridden with virtual barriers. Digital wallets, the new norm of post-demonetisation and socially distanced world, remain inaccessible.

    5.The UN Sustainable Development Goal 11 is to make cities inclusive, safe, resilient and sustainable. Yet we are building parks, cinema halls, shopping plazas and holiday resorts discarding the principles of universal design.

     

    Although some media reports and surveys might suggest that we don’t score too badly on the global index, is India really a disabled-friendly country? Can the media step away from tokenism on December 3 and really ask some tough questions on whether our country adheres to the ‘Leave No One Behind’ philosophy?

     

    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

     

  • Shruti Pushkarna: Time to look beyond differences and embrace inclusion?

    Shruti PushkarnaBy 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

     

  • Shruti Pushkarna: Not all disabilities are visible: You don’t always have to see it to believe it

    Shruti PushkarnaBy 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

     

     

  • Shruti Pushkarna: A fervent spokesperson first, disabled after: Has the media finally got it right?

    Shruti PushkarnaBy Shruti Pushkarna

     

    The last two weeks of September saw a fair bit of media coverage from the 76th session of the United Nations General Assembly (UNGA). Political gripes and handling of predominant world crises made headlines across countries.

     

    News around India and Pakistan tends to invoke a gamut of reactions and a sea of emotions. Especially when it comes to the regional conflict surrounding Kashmir. Otherwise uninterested in the usual furor, a Pakistani diplomat’s address caught my attention.

     

    The image of a woman fiercely defending her nation, reading from a Braille script at a global forum, challenged several stereotypes in one go.

     

    To set the context, Saima Saleem struck back at her Indian counterpart, Sneha Dubey, after the latter made a fiery speech accusing Pakistan of playing the “victim of terrorism” while fostering terrorists in its backyard.

     

    In response, the Pakistani delegate said that occupied Kashmir was not a “so-called integral part of India nor is it India’s internal matter”.

     

    Beyond this cross-country (s)he-said-she-said, two young women stood out for their professional abilities. And the world watched.  Bursting myths and contesting societal perceptions, there were a lot of ‘firsts’ at play.

     

    Saima Saleem happens to be the first visually impaired civil servant of Pakistan. A speech was read out in Braille for the first time at the UNGA.

     

    Both women won accolades from their country’s leadership, media and the average citizen. The focus of news reports was on the issue at hand, and not on any vulnerabilities, pertaining to gender or disability.

     

    It was truly ‘person’ first. Something activists and disability advocates have been rooting for.

     

    Although the language used by the media wasn’t completely disability-inclusive, but one is willing to forego that, on grounds of ignorance. So even though Saleem was addressed as ‘visually impaired diplomat’ and ‘first blind woman’, the narrative didn’t obsess with any sort of heroism. Yes, she was acknowledged as an inspiration to many, but mostly because of her knowledge and craft. Her blindness was merely a condition, something that became evident as she ran her fingers on the embossed dots.

     

    Pakistan’s largest and oldest English newspaper, Dawn covered the story with no mention of Saima’s vision impairment except in the cited tweets applauding her.

     

    Screengrab from Dawn.com

    So, who’s Saima Saleem?

     

    She is currently a counsellor with the Permanent Mission of Pakistan to the United Nations in New York. She has a degree in International Law with a specialisation in Human Rights Law from the Geneva Academy of International Humanitarian Law and Human Rights. She went to the Georgetown University, School of Foreign Service, in Washington DC on a Fulbright scholarship. She also has a master’s degree in English literature from the Kinnaird College for Women in Lahore.

     

    Saima was diagnosed with Retinitis Pigmentosa, a degenerative eye disorder that resulted in complete sight loss when she was thirteen.

     

    When she applied for Central Superior Services (CSS), she requested the Federal Public Service Commission (FPSC) to conduct a computer-based exam for her. But her request was rejected. Refusing to cave in, Saleem proceeded with her case quoting an ordinance that was passed in 2005 which stated that the government will facilitate candidates with visual impairment to take exams on computers. Her application was approved and she passed the competitive exam, only to face another roadblock. The FPSC didn’t allow candidates with blindness to apply for foreign service. Determined to become a diplomat, she managed to persuade the panel, thoroughly exhibiting her negotiation skills.

     

    She joined the Foreign Service of Pakistan in 2009. A strong advocate of global peace and interfaith harmony, Saima describes herself as ‘a diplomat with insight, not sight’. Interestingly her brother, Yousaf Saleem became the first Pakistani jurist with vision impairment in 2018.

     

    India also has its own share of bureaucrats (and professionals) who are persons with disabilities. Like Saima, they too have worked hard and pursued their passion to reach their current positions.

     

    On several occasions in the past, I have emphasised on the need to erase stereotypes with consistent media representation of people who lead fulfilling and dignified lives despite disability. I must confess, the recent coverage reinstates my faith in the media.

     

    Like I said there were many firsts here, one of them is the media getting the story somewhat right. Kudos to that!

     

    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

     

  • Shruti Pushkarna: Half a decade of lessons in accepting diversity

    Shruti PushkarnaBy 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