It was my first night out in my new home city of Mumbai. My mother was staying with me for three months before heading back to our hometown in New Jersey and shrilled with excitement upon discovering my evening plans at Mehboob Studios. ‘Did you know the shooting for Mother India happened there? Of course, that was “my time.”’ I ignored the studio’s fame entirely; my sole focus on the anticipation of witnessing a concert in Mumbai. Clearly, Bollywood appealed to my mother as much as the allure of this new city did to me. I arrived early, as I usually do when checking out a new place, only to discover an already packed parking lot.
I wove through the throng of concertgoers, making sure to place my cane down steadily as a signal to others — I wasn’t someone to be pushed. A security guard emerged from a backdoor. I asked him about the performance. He drew a long finger pointed towards a steep set of steps. ‘Upar hai.’ (It’s upstairs.)
‘Well, shit.’ I stood around for a minute or two with my pre-paid ticket in hand. My friend’s invitation to the show didn’t come with accessibility details, and my eagerness to attend made it slip my mind to ask.
Four years into discovering I had limb-girdle muscular dystrophy, my condition had progressed to the point where stair-climbing was out. Maybe a part of me didn’t care whether or not there were stairs — I was determined to have the experience. There was no service elevator, no secret entrance that allowed me to effortlessly glide into the upstairs studio. My excitement quickly waned. I looked up once more at the long, narrow staircase and promptly dialled Balu, who has worked for my family as a driver for many years.
The guard began to understand the situation and insisted I could be carried up in a plastic patio chair. He’d walk up the stairs backwards, directing Balu and two other men he asked to help carry me up. I hesitated at this large feat: was this too much effort for a concert? Did I want to put myself through this? I turned to Balu, ‘Are you sure about this? Is it safe? There are a lot of stairs, you know.’ I asked myself, is this worth it? At the time, it was. And so up I went, gripping hard at the chair’s sharp edges, trusting nothing would go wrong.
‘Side per reh, side, side, side (Stay on the side),’ the guard shouted on our shaky journey up. The following thoughts ran through my mind: ‘Why am I doing this? Do I weigh too much for these guys? What if they pull a muscle doing this? I definitely weigh too much for them. Great, now everyone is staring at me. I hate this so much. Okay we’re almost there. This will all be over soon.’
The men gently placed me down near the studio’s entrance. I thanked them, genuinely grateful for their help. As I sat in the chair for a few minutes more, I hoped the neon lights emanating from the inside stage would soothe any residual anxiety I felt over our ascent.
This wasn’t the first (or last) time I was lifted. The first time was in New York City when I desperately needed to use a restroom. A friend’s brother swept me up and carried me down the basement stairs to the restaurant’s bathroom.
In Istanbul, a dashing dancer carried me up two steep flights of stairs so my mother and I could watch the dervishes whirl.
In Mexico, I was lifted over steep sand dunes to relish the ocean breeze with friends.
At my part-time job in Mumbai, I must be carried up six steps just to access the building’s lift.
I spend most of the year in Mumbai, a city filled with steps and stairs of all heights: from ridiculously chunky steps to mere two-inch boosts. It’s the city I’m lifted up in most often. When I first moved here, I asked friends why, aside from space constraints, accessible entrances are so rare. Their answers ranged from rising flood levels and architectural aesthetics to complete negligence on the government’s part to either implement or ensure compliance with accessibility laws.
When faced with stairs, I’m forced to make precarious decisions about my body. There’s a level of vulnerability I experience when I walk around with my cane — I’m met with confused stares, looks of concern or pity. I’ve even come to appreciate and enjoy some of it. Hell, the world is my runway. But how much more vulnerable must I be in a public setting, especially when it’s not entirely on my terms?
Was I glad to see the show at Mehboob? Yes. Was I grateful for the support of those who carried me? Of course I was. Except the decisions leading up to that left me with mixed emotions. I had a choice to say no and turn away from the situation. But my desire to enjoy a night out was like anyone else’s — why should I be denied that? I could do without the emotional torment, anxiety and unwanted attention that ensues as I’m carried up. Eyes lingering longer than feels appropriate, onlookers’ heads moving along my trajectory as they try to dissect what’s ‘wrong’ with me.
There’s a scene from Margarita With A Straw that comes to mind. Staff members carry the protagonist Laila up the stairs when the lift in her college is inoperable. The look in Laila’s eyes is a familiar one — frustration mixed with mild fear and a deep desire for the entire ordeal to be over in a flash. Mostly, Laila seems preoccupied with getting upstairs ASAP to see her boy crush. Still, it’s very easy to feel like cargo in the process.
In Mumbai, for example, most of the accessible infrastructure in place is intended for just that. Many venues, including five-star hotels, have short, steep ramps meant for transporting cargo, not humans. I’ve mastered the art of slowly making my way up these obtuse structures because the alternatives aren’t much fun: getting lifted up, pushing myself to climb stairs with assistance, or turning away from it all.
The fact is that I don’t enjoy the act of being carried upstairs. I understand its purpose and accept it as a means to an end (given, of course, that I have the support of individuals to help me up). I’ve declined/refused the offer to get lifted out of concern for the men carrying me or because I felt unsafe. In these moments, an internal dialogue plays: ‘Is it worth it?’ I ask myself. I don’t always know or choose the right answer. Because other people are involved and a plan is required, my decision is usually time-sensitive. My choice has the potential to invite a host of ordeals: unwanted attention, anxiety, strategic planning, becoming dependent upon the mercy of strangers and being touched by random men who may have ill intentions or are seeking an opportunity to cop a feel.
Having said that, every experience of getting lifted hasn’t been shameful or scarring. It can be a straightforward process that leaves my emotional well-being intact. Sometimes it can even be empowering. I’m not succumbing to inaccessible entrances or washrooms; rather, I am literally rising above them. In those moments, I’m actively choosing to continue living my life on my terms, deciding what’s right for my body and mind, finding a way to ‘make it work’ or saying no.
Upon hearing or seeing the obstacle course I navigate in order to get where I’m going, friends and family members offer their praises, ‘It takes courage to do what you do, you’re a strong girl. Always remember that,’ or ‘If I was in your position, I don’t know what I’d do. I’d never leave the house.’ They tell me they admire my spirit and share how my ‘unbridled fearlessness’ inspires them to push through obstacles in their own lives, no matter what.
I can’t say I’ve made the right choice every time when getting lifted or that I always feel courageous. But it helps when you have wonderfully supportive people in your life. Those people that lift you up — not just physically, but spiritually — and remind you not to feel ashamed but rather empowered, knowing you are living your truth.
Accessibility issues need to be addressed in the city of Mumbai (and all over India, for that matter) but in the meantime, it won’t stop me from living the life I want for myself.
On a recent night out, a friend insisted I join our group at a popular underground club’s basement event space. I heard about the interesting events hosted by the venue and had wanted to explore it for some time. Except it takes navigating stairs, countless stairs to descend into the urban underground scene. My friends assured me that if I wished to go, they’d arrange for me to get in and out safely.
There was no pressure, since I’m past the point of feeling peer pressure in situations like these, only a desire to continue a fun night out with friends. The decision was mine alone. I’d take a look at the surroundings first. When we arrived at the venue, I examined nearby walls, pushing at levers or handrails to test the strength of their support. There was ample space to be carried. I looked over at my supportive friends, standing ready with a chair and smiled, ‘Okay. Are you ready?’
Sonali is a freelance writer and aspiring author. She has written for BuzzFeed India, Huffington Post and various lifestyle publications. You can follow her on Twitter @sonaligups.
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