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Disability, Representation And Pride

Disability, Representation And Pride

Disability Pride Month
Q. Please give us a brief introduction of yourself and a little about your disability.
My name is Karthik (he/they), and I am a cisgender gay man. Hence, there is a level of intersectionality in my identity. I work with Thoughtworks, a global software consultancy firm. I have cerebral palsy, a disability by birth, and for me, it has manifested in the form of spastic diplegia. It affects my lower limbs and makes mobility complicated for me. I would not say that it is not there completely, I have had a couple of surgeries to help me with that.

Q. What was your life and routine like before the pandemic?
I moved to Bangalore just before the pandemic to become independent, away from my family home. I lived in the USA for 5 years with my family for my master’s and lived alone for 2 years for a job. After that, I returned to India, got to enjoy homeliness and “ghar ka pyaar” and then moved to Bangalore for work just before everything got locked down. Before that, I was active in terms of workout and going to the gym. Then I would drive to the office, work and return home to relax after a long day. It feels like a different reality altogether now. Now there’s no gym, no socialising. Being stuck in one place and getting sick of video calls is definite. You wake up, get ready for a meeting and suddenly the day is over.

Q. What was childhood like? School life and friends and stuff.
Spoiler alert: It’s not that exciting. My childhood was very normal, I did not get any special treatment at school. Most of my childhood was spent in physiotherapies and under surgeries. I have had 3 surgeries- in 1998, 2001 and 2005. I did not play sports at all, but I did all the other extracurriculars like pottery, tye dying and candle making. While other kids went out to play sports or do PT in the sun, I spent my time reading books in the classroom. I would not say that I missed out on anything, I had my own experiences.

Q. As you mentioned, there is intersectionality in your identity. How did being a cisgender gay man and a person with a disability impact your life?
Honestly, I did not think much about my sexual orientation for a long time. Primarily, my childhood and my experiences were defined by my disability. I did not have avenues to socialize, even identifying as gay was not predominant because you realise attraction when you interact with people. It was not there for me, because most of my time was in physiotherapy and doctor’s offices. Once I hit adolescence, I realised my attraction towards guys and I was in a state of denial for a while. Not that I was denying my sexuality, I was denying my prospect of a long term relationship due to being gay and disabled. I did not really have the opportunity to “experiment” and make sure that I was gay, I did not know that it was a normal thing. The predominant narrative is that dating a disabled person means being the provider of all the support. This narrative makes the disabled person very dependent. Hence, I knew early on that I did not want to get married because I did not like the idea of someone becoming my support system. Not wanting to marry early on worked out well for me, because queer marriages are anyway not recognized.


Q. Did you face bullying in school? Did you ever feel “different”?
Not really, I think I got away with it because of my disability. I got advantages of the “pity card” without ever playing it. People notice queerness, on the other hand, they do not care much about disabled people or normally interact with them. They treat us lesser than and ignore us, which worked out for me in that case. I’ve heard queer kids getting bullied, but I did not because my social interactions were also limited. It kind of worked out for me, I guess.

Q. What do you want people to keep in mind when speaking with a person with a disability?
People are not defined by their disability so don’t start talking about it firsthand. It’s not your story to know or assume, it’s the person’s based on their comfort level. Don’t start with it, get to the comfortable stage where they would want to talk about it. Disability is a very personal topic, just like someone’s sexuality. Let them take that step, be accommodative and offer them help. “Let me know if you need help,” is great because it tells the person with a disability that you’re there to help if needed but that you’re also not trying to be the saviour. It is difficult to interact online because knowing someone’s physical aspects is only limited to photographs. Very seldom do we find people with disabilities including full-body shots, including me. Disabled people do this because it becomes the centre of focus and a definitive factor, while you want to be known beyond your disability. People look at it and quickly start making assumptions about aspects of physical gratification, sexual desires and desexualise disabled people. This desexualising narrative goes beyond assumptions and is also present in representation in books and movies. It is difficult to crack on a dating platform. We are also fetishized on dating apps, where people have fantasies and say things like, “I’ve never had sex with someone like you”. On the other hand, there are people who reply with, “I’m not into specially abled people” when I say “hi”. One is fantasising, other is running away. There is a middle ground to this, where a good conversation is going on and I mention that I have something to tell them before we meet. The response is, “Why didn’t you tell me before?”. Not to say there aren’t people who are okay and comfortable with dating and behave normally. It is tiring though, I tend to think sometimes, “Do I really want to invest time in this?” Because I don’t know how they are going to react. Bringing together aspects of queer dating and disability is very off-putting.


Q. I’ve seen people with disabilities receiving weird backhanded compliments. What are some such things you’ve seen?
This is called “inspiration porn” in the disabled community. People have set the bar so slow, just because they have disabilities it does not mean they are doing great things by just living their lives. The name comes from the fact that people try to derive inspiration from people with disabilities without understanding basic problems like lack of resources and support that is preventing us from doing extra stuff. We won’t have inspiration porn if there are more narratives about disabled people just living their lives. I’m just going about my day, it’s nothing special, my way of living is just different to work around my disability. Other than that, an able-bodied person doing grocery shopping is the same as me doing it, there is nothing great about it. It’s only how people treat it, being surprised and saying, “Oh you’re so independent!” I’ve also had people tell me that I should be careful on dating apps because I’m “like this”. I could not understand the logic. I think we should refrain from making people’s stories public unless they are open about it. Sexual orientation, gender identity and disability are very personal aspects of someone’s identity. It’s only about the person’s comfort level. I’m not an inspiration or doing anything different. How my life impacts you is your journey, don’t put me on a pedestal because of it. Just because I can do it, does not mean even another disabled person can do it, we all have different experiences which we need to tap into and learn from.
On the same line, people do not treat people with disabilities as normal people, they think of you as less than and that they need support to do basic things. It’s not the case, things like sex, going on dates and hooking up are very natural things that people want to do. How is society looking at it, is the question. For example, if you have to go on a movie date and you have to climb all those steps to reach your seat, how is that helping? That will be a problem. Or, even at a restaurant, if someone is in a wheelchair and there are stairs, how would they go there? This is where we need to stop thinking that disabled people want support in living their life. Having a ramp or not having stairs is a basic need for people with disabilities to live their lives respectfully. If places where people can go on dates, like movie theatres and restaurants, have stairs then people with disabilities will not go on those dates and lose that experience. Even during virtual dates, a person who is hard of hearing will not be able to communicate properly without a closed captioning or sign language interpreter. They can lip read in a physical setting, but that becomes complex on a virtual platform. Even during staycations, I cannot just plan and go. I have to check if that place is accessible. So, lack of accessibility robs a person from living their life respectfully.
Going to a pride parade, for example, how is it for a disabled person? All of that comes into the question of people with disabilities being robbed of life experiences because people can’t understand that we need accessibility and not disrespect. It is not about being treated differently, it’s about our needs being accommodated.


Q. So basically not making someone’s life more difficult?
I don’t want to use the word “difficult” because, at the end of the day, difficult or easy comes from perspective. Saying “more difficult” goes back to inspiration porn, because for you it may seem difficult but for me, this is my lived experience, my life. There is a term called “temporarily abled body” because you never know when you can meet an accident and become paralyzed. People can become disabled from any point in their lives, it’s not just about disability from birth but any point. Even at old age, people get disabled. So, how are we treating people to live their lives respectfully without feeling like a burden? Like there is a carnival that happens just before pride, it happened on the terrace of a mall. Now to get to it, one has to climb downstairs, go into a shop and then go in. Even there, how would someone with a disability be able to go? I have my crutches but, what about someone in a wheelchair? You are robbing them of the experience of enjoying the carnival. Even pride parties happen in closed spaces that make it difficult for people with disabilities to get in. It’s good to have elevators, but is your dance floor big enough to avoid someone with a wheelchair or crutches to not be pushed? We have to think about how to give everyone the space to be whom they are without feeling excluded.


Q. On that note, how do you think representation has benefitted/failed people with disabilities?
There is not enough content about people with disabilities. The movie that I can think of is Margherita With A Straw, Kalki played it well but it was not authentic. She is playing someone with a disability, while having none herself. She doesn’t get the nuance, it’s just an act. Getting the story told with a person’s experiences is a different thing, it would have been better even if the creators had someone with a disability come in and tell what to do and what not to do. The lack of representation is really there. How many people with disabilities have you seen in the fashion industry? Any drag queens? It’s because they are not even encouraged. As a part of my day job, I take interviews for my company. We were discussing people with disabilities and opportunities for them, someone immediately said, “Become a software developer because you will be sitting down all day”. This narrows opportunities for us, why can’t I be someone else? A fitness model? Why are they not thinking beyond one career path? Although being a software developer benefitted me, I’m thinking of what more I can do in terms of side-hustle. They are not even given the opportunities to think that there are other career paths, something that is more out there.
In International media, we have not faired well for people with disabilities. There is a Netflix show called “Special”, adapted from a book and now a 2-season show. But the episodes are very short, around 15 minutes. It is from a white person’s experience, excluding factors of race and other backgrounds from the narrative. We fall into the trap of making a successful person with a disability into inspiration porn. We need to get out of it, they have just lived their life, nothing exceptional. They do not have different or special abilities, they just work around their disabilities.

Q. Are people with disabilities expected to be excellent in other aspects, like studies, almost as compensation?
On the opposite, actually. Disability is seen as a defect, something that is lacking. Hence, there are low expectations. That’s where inspiration porn comes in. You’re setting the bar so low that anything slightly above the bare minimum is seen as exceptional. The playing field is different, but they must be given the support to reach there instead of reducing expectations. Understand that they will need extra support, give it to them and then see how they perform.

Q. What must one definitely not say and ask?
Don’t treat people differently. Get to know them before asking about their disability, it is a very personal topic, and you should not ask directly. We are not up for public education that you come and ask whatever you want. Don’t shy away from the topic or ignore me and talk to someone else, even doctors do this sometimes. I’m still a human who is capable of doing it. Talk to me, address me, don’t consider me invisible. Ask how they want to get addressed, the knowledge to not use “differently-abled”, “specially abled” or “Divyang” is still not predominant. “Person with disability” or “disabled person” are two common ways, but each person has different ways of being addressed. Be there to offer help, but don’t assume that I would need it. Like, opening doors, I can manage opening doors for myself, and I’ll ask if I can’t. Suddenly people come and open doors, but I still have to work around positioning myself through the open door. Doing so when I haven’t asked can throw me off balance. Don’t touch someone’s support animal or their wheelchair, treat accessibility accessories as an extension of that person and don’t touch them without consent. I can manage with a wheelchair on my own but people insist on pushing around, only to get it stuck somewhere. Don’t do that.

Q. Do you think apps like Instagram/dating apps can make themselves more friendly or accessible for people with disabilities?
I don’t think I am the right person to answer this. On one hand, it has levelled the playing field because everyone is on there. But it does come down to the platform’s policies in terms of harassment. People can be rude, but how is the platform responding to harassment reports? That would be the differentiator. Accessibility in the app ranges from it being accessible to people with physical disabilities, visual disabilities and hearing disabilities, is the app accessible to them? But that comes under app accommodations and product design, which we are not the stakeholders of. Primarily, if there is a report of abuse, how seriously is the app taking it? People will say things like “I’m not into specially abled people” and say that it’s a preference, but then the app is not a safe space. Similar to people who body shame and say “no fat/skinny people”. We should not have gatekeepers of looking a certain way because of your identity, the apps must cater to that. Outside the app, people face more. If a person with a disability meets someone from the app and finds it difficult to find a place, or go to that place and find that it is not accessible, what happens then? Or if someone is body shaming in public or in private, things like that. What happens then? People meet each other through pride events also, are those places accessible to people with disabilities? That’s where we need to focus in terms of inclusivity. If there are systemic barriers to participation, you will not have narratives and representation, their experiences will not be accounted for. It becomes like a token, “Oh I had sex with a disabled person and it did not go well so I won’t try again” or fetishization. People need to understand that disability is not just one thing, it is a spectrum.

Q. Do you see the situation getting better?
No laughs. The discourse is not holistic, we are only looking at one section and failing to understand that not all disability experiences are the same. My experience is one in millions, my disability is one in a spectrum. Even cerebral palsy manifests differently for different people, some can walk. This is a generic message I’m putting forth, these are not the end-all. We forget of temporarily abled bodies too, how will you help if one of your employees suddenly becomes disabled? Laws are also failing to identify that we need mandates like those under the Americans with Disabilities Act of 1990. Only when we get to that level, we’ll understand that we should do it. We fail at the tiniest things. For example, we have steps randomly in our buildings and offices. How will that impact someone with a wheelchair? Or, if you have to get into a room, there is a step and an automatic single door that closes unless you are holding it. If someone is holding crutches, how will they navigate? How do you understand those aspects? Moving to housing, how many apartments have lifts and footpaths that are broad and clear? Most footpaths have trees coming out in the middle or people selling stuff. Similarly, there are dividers in the middle while crossing the road. How would someone with a wheelchair navigate? These tiny infrastructural changes must come in through law and policy. This again goes back to lack of representation in media and real life, the label of “divyang”, a little bit of money and tax credit, is not it. Or, let’s say, train reservations. How will you get into a packed train that is stopping for 2 minutes? Or in flights, are security personnel trained to scan disabled bodies? I have been told to just stand up and get it done. It seems like common sense, but people are ignorant. This is where we need awareness and representation. The very idea of a disabled person travelling is not predominant, I’ve been asked to wait till I have to go because all the wheelchairs were over. And this was on an International terminal, not even a domestic one.

Q. What should the topic of conversation and discourse be, in your opinion?
Even being aware of disability and disability pride month is a big thing. In India, on social media, people see some tag happening in the USA and follow it. Have people even researched why July is disability pride month? Or about Pride month? People ask why it’s celebrated in June because it’s USA centric. You have to have those conversations, why we need these things and how to amplify them. It should not become just a commercial trick or a hashtag, we must keep the conversation going. We should get more people from the community and showcase their stories the way they want. I think representation is where we are lacking. Social media, cinema, fashion and drag are the biggest sources of media consumption. How much representation do we have there? So people can pursue alternate careers and show that they can make it and ensure good representation. Things like acting schools for disabled people can really help in that. We should not have able-bodied actors playing disabled characters, because it will not be authentic. They will not be able to show the lived experience to the audience. The audience may not identify the missed aspects, but it may not be 100% authentic. You are taking away the opportunity from a disabled person to showcase their life. I think that is where we need to keep the conversation going, share more stories and give them a platform to do it. It is not restricted to corporates, but also in a social way. For example, if I have to move cities and look for apartments, I will look for a place that is accessible for me. I may do a couple of stairs, but what about someone using a wheelchair? These small changes make a big difference overall.

Q. Do you have any closing words or suggestions?
Strive for representation, amplify more disabled and minority voices. Disability is just one aspect because there are other aspects like caste and sexuality as well. You have to seek those voices, ask if they want to share their stories and give them a platform. Respect their anonymity, try to understand their challenges, solutions and refrain from inspiration porn. I think, as marginalized underrepresented people, we have the resources to work around our challenges, but systemic challenges need to be overcome.

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