Humans are social beings. Say what you will about introverts and extroverts or even introverted extroverts, we are not meant to go through life in isolation. So, when I moved to Mumbai in 2012, I carried with me a headstrong New Yorker attitude when it came to my social life; I would explore the nightlife in my new city and I wasn’t going to let muscular dystrophy stop me. On one of my first nights out, I headed to Bonobo, a classic introduction to the city’s bar offerings. Near the bar was a young man on arm clutches. I didn’t know it at the time, but it would be the first and last time, until many years later, that I would see a young person with a disability in your average social situation. We spoke briefly about Bonobo being one of his regular haunts and shared how we dealt with the steps at the bar’s entrance. He seemed to be good friends with the staff and carried a similar determined spirit to mine. As a newcomer to Mumbai, it was encouraging for me to see that I wasn’t the only person out there making an effort to socialize in spite of physical challenges.
But friendly entrances (and faces) haven’t always been my experience while socializing in Mumbai. Overtime, I lost some of my New York gusto. The inaccessibility of the city made me dread dealing with stairs or potentially being carried up steps in a chair when I was supposed to be out having a good time. Not to mention the glares and sometimes insensitive line of questioning thrown my way about my condition. So often, I’ve felt alone in my struggle to socialize with muscular dystrophy. Where were the people in wheelchairs or other young people with disabilities? Did they get out of their houses, have friends or socialize beyond garden outings? These questions crossed my mind whenever I went out.
The answers to these questions came to me after speaking to people across disability-centric NGOs and through friends. One of the most obvious reasons not enough persons with disabilities (PwDs) were getting out was basic infrastructure. The lack of ramps, lifts, accessible washrooms (that aren’t accessible in theory, just larger) and the likes makes it extremely challenging for PwDs to even attempt to socialize.
The government’s approach to addressing the lack of inclusivity was the Accessible India campaign. The nation-wide program launched three years ago by prime minister Narendra Modi promised to “bring universal accessibility that will enable persons with disabilities to gain access for equal opportunity and live independently, participate fully in all aspects of life in an inclusive society.” One way of achieving this was to make the infrastructure at various sites across India more accessible. Oddly enough, this included government buildings, hospitals, medical practices, and railways — sites that should have been accessible for wheelchair-users prior to the program’s inception.
Unfortunately, the Accessible India campaign has turned out to be a lackluster attempt to improve conditions for the disabled without truly doing so. According to Rustom Irani, filmmaker and wheelchair-user, the campaign completely lacked awareness of what people with disabilities needed. “The program has an app wherein users can take pictures and report which places including restaurants aren’t accessible,” he told Re:Set. “But there is no follow-up. People will post and comment, but nothing is ever done to make those places accessible.”
Irani believes grassroots inclusivity in India should begin with making schools more inclusive and ensuring children of all abilities can be supported in mainstream schools. “The day all your schools become more accessible, that would be the best start for the government. I had gone to vote at a school and had to be carried up and down stairs to access the voting area,” Irani said. “I asked about disabled students and there were none. I was the only guy on a wheelchair the students had ever met!”
Integrating students with disabilities into both private and public school systems at an early stage can also help ease the stigma surrounding disabilities. Meeting someone with a disability will no longer be a source of discomfort; the able-bodied won’t be afraid to ask the right questions when they’re curious and the disabled won’t be afraid to be themselves.
While infrastructure is one of the biggest challenges in accessing social spaces, it isn’t the only reason young people with disabilities aren’t getting out. The emotional mindset of PwDs, their families and communities also plays a significant role. When people are physically shut out from having typically normal social experiences, it creates a chain effect: the less options there are for PwDs to socialize, the more isolated they feel. The more isolated they feel, the less motivated they are to get out or create spaces for themselves. We are meant to be around other people, create shared experiences with emotional connections and relationships. Without these basic rights, PwDs miss out on experiencing important aspects of a balanced lifestyle. PwDs can also feel discouraged to go out because of overprotective family members. While there are likely good intentions behind the family’s behaviour, it can often encourage unhealthy dependencies for both sides.
Finances also factor in on one’s ability to have social experiences. Many individuals with disabilities aren’t able to move outside of their home due to financial constraints. Socializing requires transport and most likely some personal assistance. Personally, I am acutely aware of my privilege: I have the resources of a car, a driver, and full-time live-in help. If I need to purchase risers for my sofa or procure chair cushions to make standing up easier, I’m able to do so. When I have carpenter design a step for me to carry, I recognize it’s an opportunity not everyone is afforded. Financial security allows me to make choices about where I want to go and when it just isn’t worth the effort. Hiring help outside of family members isn’t always an option for everyone. Neither is paying for a customized lifestyle.
This doesn’t mean I don’t push the boundaries. I still get creative when I want to enter a place that isn’t accessible. I still say yes instead of no to social gatherings. I still push past my comfort zone into the unknown because I know it’s there that I grow. Inclusivity starts when we ask what can feel like difficult questions and support one another in our quests toward living our best lives. And when we begin doing this, perhaps one day you’ll see more of us out there by the bar.
Sonali Gupta is a freelance writer based between Mumbai and New Jersey. She writes about health and social issues and is currently working on a manuscript for her first novel.