Access India should discuss this article! I feel the author needs to be commended for an honest confession. Many privileged people with disabilities don't talk this piercing reality. I often stress upon understanding each category of disability as an independent unit.I'd love to read comments and people can debate discuss this powerful write up this weekend! "Among persons with disability (PwDs), there exist individuals who have an edge over most others in the community." Antara Telang https://thewire.in/191527/visibilising-disability-bravery/
Visibilising your disability – especially when you have the option not to – takes serious bravery. Among persons with disability (PwDs), there exist individuals who have an edge over most others in the community. Credit: Reuters/Vivek Prakash Among persons with disability (PwDs), there exist individuals who have an edge over most others in the community. Credit: Reuters/Vivek Prakash We all like eating cake – the reason why we like to slip in references to cake in our conversations. If something good happens, it’s the cherry on the cake. If something is easy, it’s a piece of cake. While talking about minority groups, we like to say that there’s a ‘creamy layer’ to ignore the shit cake that lies below it. This creamy layer refers to people who are the most privileged among the oppressed. They tend to have a louder voice, greater socio-economic privilege and more cultural capital than most others of their ilk, and hence outline problems that are only the tip of the iceberg to others in their group. Take for example, cishet, nondisabled, white feminists as opposed to feminists who belong to the LGBTQIA+ community/are people of colour/are Dalits/have a disability/are at an intersection of two or more of the above categories. Similarly, among persons with disability (PwDs), there exist individuals who have an edge over most others in the community. This is where I publicly admit that I am lucky – I’m a savarna, well-educated, upper-middle-class woman who has a high-end prosthetic leg. Do I face repercussions of disability? Most definitely. I need to take several days off work – and several zeroes off the end of my bank balance – every year for healthcare. I’m subject to humiliating and outdated security checks that often involve me stripping off my pants and having to pass my leg through the X-Ray machine with others’ bags and laptops. I’ve had to hear a lot of hurtful comments about my eligibility for shaadi with ‘good boys’. (And though these become the object of hilarious drunken gaalis in retrospect, they’re not the most pleasant thing to have to actually hear when they’re directed towards you.) Despite all this, there are many reasons why I need to call out my own privilege. The first is that I do not face social discrimination or exclusion in terms of education, job hunts or recreation. The second is that my family and friends are textbook cases of what maximum levels of emotional and financial support should look like. And the biggest reason of them all is that, at first glance, I don’t ‘look disabled’. I often find myself walking a tightrope – on one hand, I certainly enjoy more privileges than most disabled people; on the other, how do I negotiate the problems I actually face without seeming like I’m hogging the mike? I have the privilege, unlike most other PwDs, of ‘invisibilising’ my disability when I choose to. When I wear jeans and closed shoes, most people around me can’t even tell that I’m wearing an artificial leg. Unlike other disability aids like wheelchairs or crutches, my prosthetic leg has the same shape and size as a ‘normal’ leg, and thus, doesn’t attract much attention, especially when covered up. It grants me the mobility to climb stairs and to walk without a limp. Due to this, I’m able to independently navigate public spaces, travel to new places alone and avoid stares from every single stranger on the road. (I settle for every tenth stranger instead, woohoo!) In fact, on the rare occasion that I get into what’s popularly known as the ‘disabled compartment’ (I mean, if you were even slightly woke, you’d be calling it ‘compartment with a disability’) on the local train, I’m usually shouted at and asked to get off until I roll up the right leg of my pants to prove my innocence to my irate co-passengers. On the few occasions that I’ve ventured out in shorts or a dress, the number of stares I’ve got make me feel like I’m Deepika Padukone. (Except nobody asks me for autographs. And nobody asks to take photos with me. And nobody has my face tattooed on their arm. Okay, fine, I feel nothing like Deepika.) I end up getting so annoyed that I prefer to wear full-length jeans daily even in the sweltering Bombay heat. However, Hema Subhash, who has an above-knee amputation and regularly wears dresses, says, “Initially, I only wore short clothes in front of friends and family, but started ‘brandishing my mettle’ (wink wink) after about two years of being an amputee.” Disability Pride parade in New York. Credit: Reuters Disability Pride parade in New York. Credit: Reuters Visibilising your disability – especially when you have the option not to – takes serious bravery. It means putting up with a lot of irritating comments, pointing and stares. It means having to force yourself to smile at well-intentioned people who just don’t know where to draw the line with questions of “Kya hua? Kab hua? Kaise hua?” However, for the public, it means the beginning of the normalisation of a body type that is seen as atypical. The more that happens, the less of a curiosity it becomes, and the more people will realise how common PwDs actually are and what their needs are. Nipun Malhotra, who was diagnosed at birth with a disability called arthrogryposis (underdeveloped muscles in arms and legs), has spent the past 30 years of his life in a wheelchair, being stared at. He says that as a child, he used to reply with pithy one-liners – once, when a stranger told him, “Aapki khursi kamaal ki hai,” he replied with, “Haan, main toh raja hoon, and I roam around on my throne!” Nipun adds that, over time, he’s become used to the stares and he now uses them as an opportunity to educate people (especially children, who are often – though not always – less covert with their questions) about disability, wheelchairs and how ‘normal’ the other aspects of his life are. Internationally, several cities organise Disability Pride parades which centre around PwDs showing off their disabilities. Nipun tells me that there exists a section of PwDs who feel that disability is nothing to be proud about, just as it is nothing to be ashamed about – it’s just something that happened to you. However, the flaunting of something that people otherwise see as weak, damaged or oppressed is, according to me, an incredibly powerful reclaiming, and needs to be done more often… And here’s where I fall short. Though I write about my disability often, it’s usually in a safe space. Venturing outside my echo chamber into the more uncomfortable outside world and being equally vocal about it there is a challenge that I need to undertake. I have to stop hiding my disability just because I can. I experience privilege in other ways as well, especially because of my class and caste location. For example, I had the accident that left me with a severed leg when I was eighteen years old. By this age, a large part of my adult personality had been formed. The ball had gotten rolling on my education, and I was already in the first year of the college of my choice, St. Xavier’s in Mumbai. I had a strong support system, and my professors went out of their way to ensure that I wouldn’t have to drop a year despite missing more than three months of college. On the other hand, Geeta Salunkhe, who also has a leg amputation, hails from a village in rural Maharashtra. She had an accident when she was just over a year old, and unable to afford a prosthetic, used crutches for twenty five years and travelled three kilometres to her school each day on foot to complete her education. Today, she’s an engineer with Larsen and Toubro in Mumbai, and finally got her prosthetic leg in late 2015. There is absolutely zero question that, despite having a similar disability, she has had to go through approximately 7,344 times the struggle that I have had to. The accidents of our births in two wildly different circumstances ensured it. To come back to the tightrope that I walk: yes, I do need to outline issues I face. The people who form the bulk of my social circles are not aware of the various hardships (yes, I see you raising your eyebrows, but they are hardships) that people like me face. It’s much easier for them to pretend that I’m not disabled, since I often don’t show it. At the same time, I need to constantly work to amplify the voices of other PwDs who do not have my privileges, and who specifically ‘look disabled’ – by helping them share their experiences on platforms I have access to, discussing their needs while I’m talking about mine, and of course, by ‘visibilising’ my own disability. After all, I can’t have my cake and eat it too, right? Antara Telang is a freelance writer. -- Avinash Shahi Doctoral student at Centre for Law and Governance JNU Disclaimer: 1. 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