Nidhi Goyal is a disability and gender-rights activist, founder and executive director of Rising Flame, a non-profit organisation that works with women and youth with disabilities. She is India’s first disabled woman standup comedian.
New routines away from the city
It was a monsoon night and I wanted to sit down with a steaming cup of coffee and pen down my thoughts. But damn, the coffee powder would take six days to deliver from Amazon! That is how the world we lived in was during the lockdown and semi lock-down stages of COVID-19.
With huge risks to vulnerable populations, like my ageing parents with health conditions and of-course me as a blind woman, we moved away from the city as soon as the country went into danger. This was even before the lockdown was officially announced in the country. We were extremely fortunate to move into a community living center, 120 km from my home in Mumbai.
This combination of the crisis situation and my location meant that we were safe and away from the city. But it also meant that I did not receive all the services that had begun for the city folks. But also, instead of thinking of the limitations, I pushed my chair back and said, Okay, Okay what were my options - tea? juices? ice cream?
I walked around touching different boxes in my kitchen and settled on the electric kettle. Hot water would have to do now. And this is what life was, for a young woman on a Friday night, sitting alone with a cup of hot water for company.
But half smiling, half annoyed, I was not sure who was to blame- COVID 19? Or my ‘early to bed’ boyfriend?
Promises and uncertainty
After eight years of friendship and a period of hesitation and figuring out, we had finally started dating in January 2020. The interesting thing was that none of the hesitations were stemming from our disabilities. Our thoughts, beliefs and working styles were the reason for our moments of pause and uncertainty.
And finally, 2020 was going to be magical for us. My man had asked me out over the phone when I flew from his city and landed into mine. Seriously over the phone! A thing that I don’t let him forget. He had followed it up with a please, a stronger please and a very very strong please requesting me to move in with him.
The private dining area of the fancy Gurgaon restaurant was full of whispered promises – promises of togetherness. Neither of us knew then, how much these promises would be tested in the months to come.
Months of innovation, months of frustration and months of struggling to support each other remotely was too much. It was of course too much for everyone, but particularly difficult for a couple like us.
Hmm lets see, because we both are extremely calendar driven; I for one hate long distance, he was living without a flatmate after years, I am a foodie and I had no access to my comfort junk food / restaurants! And oh yes, perhaps because I live with blindness and he lives with low vision.
A month passed and he would not ask for a video call and I had begun to feel annoyed. Being used to being showered with compliments or the typical boyfriend visual flattery, I was feeling starved. And somewhere the insecure part of me was creeping up on the confident young woman that I am.
‘I love your smile’
Very hesitantly I asked him, don’t you want to see me? The helplessness in his voice cut me. ‘Of course, I want to see you baby but I don’t want you to feel like it would be difficult for you and don’t want to inconvenience you. You are going through so much otherwise, that I didn’t want to ask for you to find a good wi-fi spot and make that extra effort of adjusting the camera’.
Holy crap! The resistance, the silence was not because I was not attractive, or because he did not miss me, but because of some misplaced noble reason of saving energy and effort.
Grinning like crazy, I made my first video call after 40 days of lockdown and, ‘Hey gorgeous, I love your smile,’ were the words that welcomed me and parched my soul.
But as someone who was very tactile even before she became blind, I struggled a lot with losing that privilege. Yes, we were in different cities even before, but with my crazy work schedule and him working out of the city which I visited at least twice a month for work, made it very convenient!
So this long distance relationship was not so long distanced for us. But now the digital world was the only link, and quite frankly on bad days I would think this link was very tenuous literally and metaphorically. Literally because my cellular network was no good where I had moved to and Wi-Fi was not yet installed.
The only temporary or sometimes available piece was the five-year old phone with not great batteries or mic or other things which housed an additional working sim for me. Literally because unlike for others, the entire digital world was not open for us both as screen reader and magnifier users.
The inaccessibility’s of apps, websites, and digital content meant that options albeit there, were also limiting at times, which meant that we could not just pick a favourite film to watch, but would have the additional layer to check if and which film of ours had audio description.
This meant that when we wanted to send little things to each other, we were restricted to the e-commerce sites that were accessible, which some would say are many but sometimes the cynic in me said yes but always fewer than non-disabled folks.
Life is not Bollywood!
Metaphorically, the link was delicate because we had just figured a way of being with each other, of ways that worked for us as a couple. And wham, bam! the world had changed. We no longer knew what worked for us as individuals, let alone what worked for us as a couple.
What would something as basic, but as important as spending time, would mean for us digitally? What would our time expectations from each other be when he was living all alone at home with no additional help or human interactions, and I was suddenly living in a closed community with not my usual work infrastructure and many demands on my time.
The big question was how would we manage our stresses and frustrations being ambitious young professionals? With the corporate lay-offs, will he be sacked? Would there be significant pay cuts? As the head of the organisation, other questions assailed me - would my team be able to perform? Were they safe? What were the urgent responses we had to think of and provide to the community my organisation worked for?
Even realists like me sometimes wish relationships were more like Bollywood where little effort gave huge rewards; where happily ever after was a give in ; of course where you start understanding every breath the partner takes. Sigh, life is not Bollywood and relationships are hard, you need to invest in them.
Creating intimacy digitally
But what happens when you have very little time, strength and energy to invest in them, what happens when external factors make it harder- like dating with a disability during COVID? What happens when the pride of being independent and of having reached there in life after many struggles just vanishes because of the new normal in the crisis?
As a partner, I can tell you now that I felt deprived not only because we didn’t meet. But I felt deprived because there was no way for me to see his swollen cheeks when he wanted to throw a tantrum and get his way, there was no way for me digitally to see his head bob up and down in enthusiasm when he planned something.
And there was no way for me to sense his gaze saying he finds me sexy, which his breathing and touch would tell me otherwise.
And I shared this sadness with him at some point when it all became too much, and I noticed since then he started describing all his actions and sometimes his reactions for me as well. ‘I am also folding my clothes while talking to you’ and ‘this is that shirt I wore and you really liked last time’, became just some of the descriptions that were peppered for me to fill the visual silences in our intimacy; and all without me asking for it.
Long distance felt longer
Think, innovate, try, repeat the process became our mantra. Watching films together? Damn the viewing party feature on that app which was not accessible. Playing games together on an accessible gaming website? But he is not interested in cards. Reading a book? Hmm, I like fiction and he likes non-fiction.
We never gave up finding newer things to do. Honestly with all our constraints and difficulties we also tried to follow each idea through, but it was not always successful. We are not saints, so we did shove the blame of incompletion on each other. But we knew one thing for sure, that both of us wanted to spend time with each other, and we were trying really really hard.
Distance in the times of COVID is harder, but long distance in the time of COVID with a partner who lacks the skills to indulge in romance and intimacy over the phone … hits the top of the difficulty scale!
The worst was the fear and the guilt that I went through. He is alone, is he safe? Will he cope with the stress and what about his mental wellbeing? Hand in hand went the annoyance of feeling pushed, feeling not understood on commitments and constraints living with a family and within a community at that.
How could we completely understand each other when we were ourselves coming to terms with our altered situations and ways of living. The initial months were difficult, uncertain, and left us trying very hard and often feeling misunderstood.
So work pressures kept mounting and work had to be done . It would be great to have a virtual office space, wouldn’t it? What better than to share that space with him…. 7 a.m. he was at his desk and I was on the makeshift desk – the foldable bed table.
More laughs, gifts and dates to come
Occasionally the sharp inhalation or the frustrated sigh or the noisy stretch made the hours together really come alive for me. I got to work with someone else around which really enhances my productivity, and him having the possibility to look at me intermittently through a few hours every day was perhaps the key for both of us. We felt closer, we felt supported and honestly, we both also felt a little smug and smart for having come up with this idea.
We had our bad days and good days. We had our speaking days and non speaking days but I feel that COVID was indeed the testing time that brought us closer and made us more sensitive to our imperfections, differences, and desires.
Looking back, I can laugh and smile and feel awe at the same time. The first gift that he sent me during the lockdown and semi lockdown was a chargeable fan since electricity was uncertain during the summer and then during the monsoons, and he wanted me to sleep through the nights.
Let me tell you that this thoughtfulness carved yet another special spot in my heart for him, perhaps more than even all his consequent gifts did. People always imagine that I am the creative one, but thinking out of the box, innovating, and researching are his thing- perhaps a gift of his Ivy league education.
My first lock down date was a stand-up comedy show which he bought tickets for and we watched it together at a distance. The show was on zoom and I was sitting with two different earphones in my ears - one to hear the performance on zoom, and one to hear him over a phone call. Our synchronised laughs calmed us down and brought us close in unique ways- and left a hope for many more dates to come!
Rising Flame in collaboration with Love Matters presents a series of essays on love, intimacy, relationships and disability. Dil Vil Pyaar Vyaar is an effort to amplify voices of disabled women; narratives on love that seldom are seen in mainstream discussions on romance. Starting February 14th, we will be releasing four pieces authored by women with disabilities giving us a sneak peek into their lives, dreaming and hoping for the possibilities of love.