Mumbai Meri Jaan- Candice Dsouza

 

I still remember all my firsts - as a young woman with a disability, I had had a lot of firsts a lot later than most people. No, not my first time drinking or going to a club - I’ve had those too - but my most memorable firsts were my first experience of independently going out of the house,  using public transport, crossing the road, my first ever independent shopping experience and even my first time riding pillion with a friend on her scooter.

As a child growing up with cerebral palsy, I had been (much to my annoyance) sheltered greatly by my mother to the point where I wasn’t sure what I would do, unaccompanied in public spaces. But as will all things there is a first time for everything. So it was with me.

 On an especially rainy evening in June 2015, I found out I’d gotten into St. Xavier’s College, Mumbai. This would’ve been an occasion to celebrate for anyone else. After all, I’d done fairly well on my exams and “made it” as we starry eyed teens looking for the fun Bollywood-esque “college life” experience would have described it. But for me, this spelled a host of new challenges, that I was certainly anticipating but didn’t recognize the gravity of what lay ahead (well, who am I kidding? Perhaps I did, but I didn’t want it to dampen my spirits.)

                                           

                                 Me with my friend who took me on the Andheri Local Train

                                               (Ironically on Independence Day in 2018)

 How would I travel over forty two kilometers from home, I wondered, in a city whose trains were brimming with harried, hasty commuters, permanently in a rush to get on this multi-compartment colonial monstrosity that whistled its way past me nonchalantly? It was almost like the train mocked me, for my inability to be among the extremely determined, agile horde that pushed its way into the compartment, something of a rat race worse than any exam I’d ever taken. People jostled right past me, and I heard the whistle blow and the train move, realizing my feet were still rooted in place on the platform, almost like the roots of a tree unyielding despite my desperate brain riding them to lift me into the train in front of me. For the first time in my entire life, I truly understood the meaning of what my surgeon had told my mother seventeen years ago - the weight of his words  “ She’s living with an intelligent mind trapped in a stubbornly disobedient body” dawned on me at the ripe old age of eighteen.

                                           St. Xavier's College, Mumbai, Farewell, 2018

 A week later, at the insistence of my worried parents, I unwillingly hauled myself into a cab and headed to college. But dare had other plans, and as the old Bollywood adage goes, I found a way to get what I always wanted - a “normal” college travel experience. After some hesitation, I found my place in the hordes of students at Xavier’s - the imposing Gothic structure stared down at me, yet another dreamy eyed hopeful young person, waded (or should I say waddled?) my way through the hordes of students - to the notice bird with my timetable. My classrooms were mostly on the terrace, where the ancient 18th century  teakwood elevator didn’t go. So I clambered my way up the narrow staircase and finally entered the class and even crossed the busy streets near CST by myself with a triumphant air about me, as if I’d just experienced my life’s greatest victory.

                                                                 

                                                                College Farewell! 2018

It’s been 6 years since that day, and I’ve almost mastered all modes of public transport, except the local train. The turn of events came three years later, when (rather ironically) around Independence Day in 2018, when my set of equally adventurous and (my professors and my petrified mother would agree) rebellious friends, who against their better judgment took me on the train with them. We had to come up with the safest plan and my rather ingenious friends decided to board from Vile Parle (a slow train station and therefore less crowded one). I was barely done taking a horde of pictures from the train (window seat, of course) when the women in the compartment began noticing my unflinchingly gleeful grin, realising  with some amusement, that this was my first time.

                                                        

                               Just before I received my degree! Graduation Day, 23rd June 2018

When I finally built enough confidence to defy the cautioning words of concerned teachers and peers, I went on a solo trip to the metro, which was a pleasant surprise, as it had ramps with banisters that led up to elevators that took me directly to ticketing booths and the platform. It was less crowded and the magnetic doors meant that unlike trains, there was safety and no possibility of me being pushed off the train. The added thrill of doing this without anyone’s knowledge only inflated my sense of accomplishment.

This episode only served to embolden me, and I soon found myself in a series of firsts. I realised that despite its uncertain frequency, BEST buses were a safer mode of transport, because the front entrance meant the driver saw me and didn’t start until I’d slowly hauled my way up the steep steps. My seemingly “normal” appearance when I was seated meant I drew hateful stares from elderly people, who felt I was “using” their reserved seat, until sending my embarrassment, fellow travellers explained I was disabled. Thereon, it almost felt like yet another contest - a contest of whose suffering was “greater” and therefore, deserved the comfort of being seated on this bumpy long ride home. Initially , despite the vehement protests of fellow travellers, I gave up my seat for these elderly people, until some neurotypical adult guiltily (albeit begrudgingly) relinquished his back end seat for me.

                                                    Loitering at Maritime Gardens, Mumbai 

 My first solo shopping experience (at the huge Phoenix Market city in Lower Parel) was another story. Every few minutes, a random person in the mall stopped me and enquires why I was “left unattended” in this public place. I could feel the waves of sympathy for me, judgment towards my “neglectful parents” and horror at seeing a disabled adult for what was probably the first time in their lives. Trying clothes on with no seating in tiny trial rooms not equipped with stools or seating was exhausting, and the walk from end to end of the mall in search of the elusive elevator (My reflexes are too slow to get on to and off escalators) was so exhausting, that I couldn’t get out of bed for almost 2 days. But the experience taught me not to assume I couldn’t do something until I’d tried.

                                                       

                                                           Loitering at the Upvan Lake in Thane

These seemingly innocuous struggles made me realise how inaccessible the city was for someone like me. Staircases and even ramps to most public buildings had no banisters, impossibly high and broken footpaths, overcrowded trains and no elevators meant I needed help with a lot of spaces. Naturally, this meant I wasn’t truly as “independent” as I’d imagined. As a woman who bought into the narrative of female independence as a prerequisite to be a true feminist, this did make me feel hypocritical, particularly when I needed to use wheelchairs at museums or airports to avoid missing out on my flight. 

                                                                      

        My first time wearing the safety hazard better known as the saree at Traditional Day in college

But that got me thinking about spaces and how much easier it is being able-bodied in a country as unaccepting of difference as ours. It made me rethink a lot of things - such as my understanding of the word “disability”. Was I truly disabled by my body, or by the system and the infrastructure around me, that held no consideration for my needs? After all, healthy bodies are ephemeral. Everyone will age, fall ill, or otherwise need assistance at some point. What’s to become of us when the frailty of age or infirmity catches up with all neurotypicals in a society that is so capitalist that it only prizes the productivity and financial viability of our bodies?

 Over time, although it’s still a struggle at times, I acknowledge to myself that for me, “independence” wouldn’t necessarily be absolutely complete, and that I would still need to ask for some help in certain inaccessible parts of Bombay. But none of that made me any less feminist, independent or worthy. My struggle to feel “adult enough” continues but now I’ve come to see them more as an act of rebellion against a system designed to exclude me than a struggle to fit in, because why fit I’m in a world of people dying to stand out?

About the author- Candice Dsouza is a young therapist who lives with cerebral pasly. She loves reading and talking about everything ranging from politics, social justice, disability rights to the newest TV shows. She thoroughly enjoys the thrill she derives from taking risky local train ridesin Mumbai and drinking countless cups of Iced Tea!                             

                                                             

                                                                 

A revolutionary body- Samidha Mathur

 

Samidha Mathur at a salon!

The very first images that I harboured in my brain about Delhi were images of revolution. I saw huge crowds protesting, demanding rights which should be a given in our political capital – particularly following the repeated instances of rape and state inaction in Delhi. Seeing people gather before seemingly impermeable Houses of Parliament made me feel powerful, in a way in which I had not felt before. Moving here from a tiny town in Thane thus, felt like it would be my political awakening.

I wanted to march down streets with huge banners and posters, and make my discontent heard. After all, a protest seemed like a mode which gave the collective their space of expression – and that was what I loved the most about these. The fact that a state could not avoid or ignore you if you were in their face or in their way, as protestors did. I wanted to immediately be one of them – make my discontent heard. And as a queer disabled woman, I sure had a lot of discontent.

The very first thing I wanted to do when I reached Delhi, was therefore, to go and see the Parliament. With all my glory, I decided to embark on this adventure, only to learn that in fact, accessing the main road of the Parliament was impossible for me. With frequent ups and downs, and a non-wheelchair friendly tiling on its footpaths, I stood confused. How was I supposed to approach this institution which claimed to represent me? Could I do it by myself? Thankfully, I did have help from my family to make my journey to the Parliament simpler, but are disabled persons who wish to be political then only ever recognised as plus-ones, and not as worthy of accommodation themselves?

My family asked me to not make a lot of this experience – citing examples of how all old government buildings are inaccessible – and how my symbolic comparison with how this demonstrated the able-bodied assumption that underlies all our laws was swiftly deemed to be an overthought. Maybe it was. But it did seem like politics wanted nothing to do with me at all.

There was still a lot to be excited about outside the Parliament. I began looking forward then to the queer pride parade I had excessively obsessed over yearly. Preparing myself for this meant preparing the perfect outfit – I mean with the rainbows and the glitter and the bright lipstick and feathers – I was ready. This was political to me, being out there, and occupying the roads of our capital as a queer woman. It was all the more special as this was the first time I was doing it as not a criminal under the law. I was happy that I would feel free.

However, my happiness was not permanent. A Pride Parade also involved walking, in the June Heat, which was not a good mix with my nearly constant dehydration, and my wobbly legs. Here as well, I needed a hand to hold, someone to walk with me, because the route was in fact wheelchair inaccessible. And as I held the hand of someone I barely knew on this walk, while feeling lightheaded – I came to a realisation. Was I even meant to be here?

I mean, do not get me wrong. I really really wanted to be there reclaiming my sexuality, walking a walk meant to be about equal love and rights for all (even though I later realised how exclusionary it actually was). But, was I meant to be here? Did the organisers, just like the architects of the Parliament imagine a situation where my disabled body would be there in all its glory? Or, was I meant to sit at home, hidden? It seemed like a dilemma – using my voice to make political change was what I always wanted to do, but somehow, my body which carried this voice was really not meant to occupy this space. And that is what I saw when I looked around and saw reclaimed love, I still saw no bodies like mine, struggling to walk, almost fainting while celebrating themselves.

What then is our revolution? Who is it for? I refuse to believe that it is mere coincidence that I was unable to access both a government legislative house, and a public movement on the streets – the only two modes of political expression that I knew at that point. Instead I believe that the discomfort I felt at both these places reflects how far away being political is from my body, reflects just how left out bodies like mine are from political discussions – because, we never occupy space at the political roundtable anyway. Not because we do not want to, but because we cannot.

For three days after Pride, I lay in bed with my legs unable to move, because the walking they endured was not normal to them. And next year, and the year after that – while my friends went to Pride Parades and Anti CAA-NRC Protests, I chose my body instead and stayed at home. While they went to the streets to ask uncomfortable questions, I chose to avoid my own physical discomfort by staying at home, silencing my voice. And that is a choice nearly none of them had to think about.

I do not know if this is my careless optimism speaking, or some internal peaceful voice of wisdom – but I believe that my decisions were just as silently revolutionary as theirs. Choosing my body and its comfort, over spaces which were never meant to be mine, was hard – and so was not going to these spaces and point out their inaccessibility (merely because I would have really loved to do that). Recognising sometimes that a movement is not just about you can be the toughest thing of all.

However, I also do realise that this narrative is about me, it is about my imperfect body, and its desire to take on the streets. Can I do it with broken footpaths, horrific ramps and walking only protests? Certainly not. But my desire to do it with my imperfect body is still revolutionary – because it questions the crux of these public movements. Yes, I am disabled, and Yes, I am political – and therefore, political spaces must necessarily accommodate me. Because I want to be a part of the noise that makes the change, and not just from the sidelines with someone holding my hand, or from my home typing this out – but from the centre of it all, sitting in a wheelchair in all glory.

Now, wouldn’t that be a revolution by itself?

About the author-

Samidha is a law student studying at Gujarat National Law University, Gandhinagar who absolutely loves dogs. She lives with Ehlers Danlos Syndrome-III, Fibromyalgia, Chronic Fatigue Syndrome and Rheumatic Heart Disease. She wants to change the world everyday, but settles for being able to get out of bed and feed her community dogs.

A WOMAN’S PLACE IS IN THE REVOLUTION - Anusha Misra

NAYI DILLI

Going to a new city made me realize and reflect on spaces. This was the first time that I was going to

be all on my own. I had to start from scratch : get used to not only my emotions, but the physicality of my

location. Ramps are meant to be accessible, not rugged and uneven. This was a city where the roads

were too wide, the traffic lights were too bright and the cars zoomed in and out. As a physically disabled

woman, 5 ft in height and anxiety in her heart, I had to learn how to take up space and make the city my

own.

Making the city my own had an entirely different connotation for me as a disabled woman, than say,

my able-bodied counterpart.

At the movies, exploring a city to an able-bodied woman meant going on long walks, meeting a cute

person, falling in love, going to Sarojini Nagar and shopping. But for me, everything had always been

terrifyingly inaccessible. The crowded, inaccessible lanes of Sarojini Nagar, the long, winding, roads

filled with pebbles at Jugmug Thela, the concert which had no chairs at Saket mall, and oh, romantic

love. 

Romantic love, for me, was distant. I had convinced myself that it's unattainable, and hence

unnecessary. I always ended up choosing the first person who asked me out, who executed the bare

minimum and who frankly, never really met my standards. But, my mind would think, ‘’Oh yes, this

person accepts me DESPITE my disability, despite my flaws, despite my voice, despite my everything.

They’re the only person in the world who’ll accept me as I am, so I better hold on to them EVEN if

they’re abusive, manipulative and do not live up to their words.’’

My thought process was reiterating an ableist society - that applauds an able-bodied man for ‘’agreeing’’

to marry a disabled woman. Pay close attention to the words used in these two paragraphs -

‘’DESPITE’’ and ‘’AGREE’’, makes dating disabled folks seem like a favour, doesn’t it? You see, in my

experience, even when able-bodied folks do the bare minimum for disabled folks (ie. Carrying food from

a buffet, helping me cross the road, helping me climb the stairs), they always remember to point it out

to me that what a great, big favour they have carried out for me.

Well, I’m anything but a favour. I’m Fierce, I’m Radical, I’m Fabulous. To find power in my reality, however, took me many years.

                            I’m Fierce, I’m Radical, I’m Fabulous. (Dont fall for this easy breezy look)

‘’CHALEES RUPAYE KYA HOTA HAI, BHAIYA?’’

I would venture out into the city with caution - counting my steps, fearful, and weary. At 20 years of age,

I took my first auto ride on my own. I distinctly remember the vibrations on the bottom of the auto, as it

went through my shoes. It made me feel alive and independent, in an able-bodied world. Suddenly, I

had discovered an entire new feeling on my auto ride : a feeling that gave me power, a feeling that made

me feel radical, a feeling that made me joyous. Public transport, I discovered that day was actually fun!

Until, I reached my destination and the auto driver turned to me and said - ‘’Chalees rupaye’’. I panicked

, being from Calcutta I hadn’t bothered to learn my numbers in hindi. ‘’Chalees rupaye kya hota hai,

bhaiya?’’ I said, as I panicked. He chuckled - it seemed like I had made my first friend in a new city!

                              Learning something new about my new city everyday (and making notes)

MY FAVOURITE CHADDIS???!

My hostel room however, was my haven. It’s where I put on lipstick and slept in my favourite lingerie

(Um, yes alone!). As I look at myself in the mirror, and at my naked disabled body, I realized something -

I’m beautiful! Actually I realized one more thing : that able-bodied men have disempowered me my

entire life. I’m my own mother now and that I must look after myself in a new city - because no one else

will, not even a partner.

But to be a disabled woman in the world, one had to have courage, work harder than her able-bodied

counterparts, and be fearless.

                        Thats an accurate representation of me in my hostel room in Delhi Summers

Let's deconstruct these 3 terms : courageous, workaholic and fearless, shall we?

What does having courage and being fearless, mean to me, as a disabled woman?

Courage means being unafraid to dissent, to question the existing social structure, to be enraged. Even if it means dissenting in my mind, and not in real life, always remember : it is still valid. 

What does having courage and being fearless, mean to me, as a disabled woman?

Courage means being unafraid to dissent, to question the existing social structure, to be enraged. Even if it means dissenting in my mind, and not in real life, always remember : it is still valid. 

We have to redefine our definitions of activism and politics. No voice is unequal or not valuable. My

speech difficulty that is sidelined and ignored just because ableists fail to comprehend what I’m saying,

is political. When my speech and agency is ignored, and others speak over me–a tool of systemic

oppression–is also political. I speak a language of resistance and rebellion. 

I grew up with a speech difficulty, something that I’ve been ashamed of, for a long time. Sometimes, I

wouldn’t talk for an entire day, because I was so afraid of people hearing my “disabled” voice. I was

disgusted by how it sounded. So much so, that when the teacher would begin the role call I’d dread it

because then that meant having to yell back “Yes, I am present” to my name. When I say I was afraid

to Take Up Space, I also mean the space that the voice I have muffled for years would take up. But now

when I look back at every instance, I think to myself, “Should we really have a loud voice to take up

space?” Maybe my voice is not loud enough for everyone to sloganeer with at political rallies and

protest sites and give elaborate public speeches. But it is still enough, isn’t it?

Why don’t we make the definition of political spaces more accessible and disabled-friendly instead?

Just because I’m an activist who writes about disability makes me no less than an activist who speaks

about disability in front of a large audience. I feel that we really need to change our perspective and how

we view certain concepts, even within the disabled community itself, where women with speech

difficulties are discriminated against.

Now, what do I mean when I say that, as a disabled woman, I need to work harder than my able-bodied

counterparts?

When I say work harder, I don't mean in an able-bodied sense. You see, I can work hard from anywhere

- from my bed, from my table, after having a good night's sleep, after waking up at 12pm - one doesn't

have to have a certain able-bodied standard to work hard : one doesn't have to wake up at 5am, they

can work hard even after 12pm, one doesn't have to sit up straight at the table, they can even work

hard from their bed. For many of us who are chronically ill, the bed is our safe haven. Sometimes we

can't get out of bed due to our aching bones. But don't worry, that doesn't deter us from working hard

akin to your able-bodied employee. As disabled folk, we can start an entire social movement from our

beds, make routines, get sh*t done. You get the point. 

   My all time favourite look!  Resistance is so sexy!

How the meaning of survival has changed for me -

In my childhood, as I looked down at my crooked, bent fingers begging for my love, begging to be

accepted, I quickly hid it under my coats because my environment told me that it is unattractive and

hideous to be disabled. I grew up with fairytales where only witches had crooked teeth, crooked fingers,

crooked legs. Meanwhile, Cinderella was able-bodied, tall and white.

When I approached the end of my teenage years, the only thing that was on my mind was that I wanted

to go to the supermarket alone for the first time in 10 years. It’s all that I could think of. All I wanted to

do was travel in public transport and go for a walk alone. I had never gone for a walk alone or gone to

my local bazaar alone. Being independent in my own way, I felt was essential for my survival and

well-being.

Survival for me now, means an entirely different thing. Survival to me means acceptance : To be able to

dance in my room however I want - not the able-bodied way, but my disabled way. To be able to move

my curved fingers in the form of a dance step without a care in the world - At this point I don’t care if I’m

attractive to anyone - I should be attractive to myself. At 14, survival to me meant catching up to able-

bodied standards of living, dancing, affection and dating. But, at 23, survival to me means creating an

affirmative space for fellow disabled women where we carve out our own disabled histories. It means

not waiting for anyone’s approval but making an impulsive decision anyway. Learning, un-learning and

re-learning from impulsive decisions and looking out for yourself. As disabled women we need to speak

up, speak out and take up space in our neighbourhood, on roads, in grocery stores, at the dining table,

in conversations, in panel discussions. We need to so the seeds of intersectionality with our disabled

fingers and watch them bloom for future disabled women. 

Speaking up is easier said than done because for me personally, as a woman with a speech disability,

speaking up doesn’t only serve an auditory function. It becomes a tool of political resistance - whenever

I speak up, I speak up with immense courage. I speak up carrying a history of oppression, of ableism,

of misogyny, of harassment. I speak up carrying centuries of disabled anger, angst, dissent and

resistance. What is the use of being at the table if I’m not heard and acknowledged? So, whenever I

speak up, it takes effort. It takes acceptance - for me to accept my disabled voice and to get over my

fear that others might not understand me. When I was 14, able-bodiedness was something I looked up

to - like something I had to achieve, something that would finally make me happy and satisfied, just like

a before and after picture of someone who had lost weight. 

GASP! YOU’RE DISABLED!

Women with disabilities suffer from misinformation regarding their sexuality, far too often because most

doctors would consider us to be devoid of any desires or in other words, asexual. Disabled Sex-ed is

non-existent. Imagine a world where discussing accessibility or logistical requirements during sexual

intercourse isn't awkward, or weird. Imagine a world where I wouldn’t have to tell men I just met on

tinder that, ‘’I walk with a crutch’’ and that I hoped that that wouldn’t be an ‘’inconvenience’’ for them.

Imagine a world where we taught disabled girl’s to love themselves and normalized asking all those

questions that were at the back of our minds but we couldn’t ask because our parents had never

educated us about sexualities or identities. Imagine a world where we didn’t tell disabled girls that they

were too ‘’weak’’ to have sex. Imagine a world where some able-bodied men learn what ‘’no!’’ means 

 

As soon as I entered college, I remember my peers would run to ask my friend, "oh but she's disabled

and has a boyfriend? How?". There was this unsaid and invisible clause that a college student who's a

disabled woman should behave in a certain way : she shouldn't live life according to her own choices :

this would entail her not being able to go out with friends at night but instead, staying in and studying

because of course, disabled women cannot party. Since childhood, my disability had prevented me

from behaving in a certain way, that meant standing up for what I believed in. I had to be nice and

polite because I depended on my classmate for their help even if they were mean to me. I couldn't be

hostile to those who were rude to me because who would help me go to the canteen or who would help

me with notes when I was absent due to the untimely flare up of my chronic illness?

                                               Getting around on my own (and shopping of course!)

DISABLED DISSENT

Why do I have to fit into the various othered boxes constructed by my able-bodied classmates? Why do I have to be "the ideal disabled woman" and not someone who lives life on her own terms? You know what, I don't want to be an inspiration. In fact, I'm far from that. I'm flawed. I'm flawed and sad and depressed and angry. I have no motivation nowadays. Why is there a certain standard that disabled women must live up to, a certain standard that paints us as relevant only when we become TedX motivational speakers, or we "inspire" others with our struggle and make them feel better about their ablebodieness?

Until next time, 

Your fav disabled girl in a new city.

A little bit about the writer-

Growing up in a bookstore, books taught Anusha ways of dissent and how to take the road less travelled by. She is a psychology graduate from Lady Shriram College, a writer and the Editor-in-Chief of Revival Disability Magazine, a magazine on Disability, sexuality and intersectional Ableism. She writes a column about Taking Up Space as a disabled woman on Feminism In India.

She describes herself as "queer, chaotic and disabled" and strongly believes that intersectionality gives marginalized women the emotional skin to survive in the world.