This is the second part of a three-part series by Soumita Basu, a social-development-practitioner-turned-entrepreneur. When she was diagnosed with an autoimmune disorder, Soumita’s views on society transformed. This experience made her realize how much is wrong with our society and the way we organize it. Join her reflections on re-thinking productivity, inclusivity, and entrepreneurship.
Slipping through the shades of oblivion
[By Soumita Basu]
It was a day like any other, until it wasn’t. No, not days like just anybody’s. But like ours. The ones in which we have to make umpteen calls if we want to catch up with a friend over coffee. Or plan days in advance if we have to celebrate with a lovely dining out experience. No, our days are not like yours, because everything needs planning – to the last detail. And then not much is left to uncharted experience. I am like anyone else, sometimes wanting to tread carefully, and sometimes just wanting to jive spontaneously. Having to meticulously plan every single outing can be tiring.
I’m tempted to think this need for such extensive (and often, expensive) logistics is due to my disability. It all happens, because I can’t move easily; because I use a wheelchair; because my hands are feeble and crooked, deformed and grip-less. And then, I think again. It’s because ramps are rare; it’s because everyone is expected to be comfortable with the same spoon; it’s because everyone thinks lounging is more comfortable (no! It hurts. It actually hurts most people, irrespective of their disability). And then on such days, I realise that it’s something much more fundamental: it’s about having surroundings that are thoughtful. Its knowing that I’m not ostracised and that people have given me enough thought.
So what really had happened that day?
I had yet another experience where I was told I was asking for a lot of accommodations. Reminders at every step that I’m not really mainstream and am expected to stay on the margins. Yet another experience where I had to claim my space instead of feeling I naturally belong. This surely wasn’t my worst experience but definitely one of the most frustrating. Here’s why: I was invited on this program for my work on inclusion; the program was by an organisation that promotes inclusion, diversity and encourages empowerment. But I felt excluded by someone who claims to be dedicated to the cause of (women’s) empowerment – the main facilitator of this programme and here, we will call her Halodale.
In a snapshot: I was one of the finalists in a program for women entrepreneurs, curated and organised by an agency and one of the leading universities of the world. Due to the pandemic, most of the programme was adapted for an online delivery. After nearly 18 months, the last 3-day segment was held in person. My disabilities, by then, were well known to the organisers. I had been given a lot of spotlight on their social media, for my work and often my lived experience of physical disabilities. Yet, the hall arranged for this 3-day meeting was not accessible for me. In fact, when I wasn’t asked if I had any specific needs, I was happy to assume they knew how to ensure inclusion and diversity. It was only when I started asking about some specific accessible needs for the room I had been assigned for my stay (more out of habit!), that I realised no thought had been given to how I would navigate the space. Halodale then just left it to me to contact the venue and make the right arrangements, and I did. Apart from fixing accessibility in my room, I also shifted the meetings to an accessible hall within the same grounds. There was such a space; the organisers had only to ask.
When suddenly faced with it all, Halodale only asked me this: “Would you like to stay in your room when the women entrepreneurs’ group goes out for dinner together? It’s a part of the agenda on Day 1 and I don’t know if the restaurant we are going to is accessible, but I will be happy to arrange for your dinner in your room. Would you like me to?”
I felt a bit stumped. I asked her if the objective of the group dinner was networking (extremely important for entrepreneurs). She tried to dodge it initially and then agreed that it would help in networking. However, she insisted that staying back could be an easier option for me. I countered the insistence with a simple offer: I can suggest accessible restaurants if she is willing to consider it. (It wasn’t difficult to find these restaurants as some mobile food apps allows restaurants to mark themselves as accessible and disability-friendly). I sensed reluctance. She had already used some contacts to reserve tables. On probing I found the reservation was without any pre-payment. Although I must admit, even that should not be an obstacle to include a participant. She offered to carry me over any steps we might encounter. Neither my safety, nor my dignity mattered to her. I refused. Finally, she agreed to look for another place based on my suggestion.
After everything was settled, I cried. Ten minutes were washed away by my tears. No, I didn’t feel relieved that I was finally included. I was pained that even where I had made a mark for myself, I still had to fight to be included. I cried because I just went to war to make space for myself, in a place where my existence was already known, where I had earned my spot. I was included in the program, but was far from being integrated.
Can laws enforce integration?
The hotel where the meetings were held boasted of four stars. To ensure it retains all its stars, it had to abide by the laws passed under Right of Persons with Disabilities Act (2016). It had mobile ramps. They are always quickly hidden away as soon as a wheelchair crossed over it; brought out only when another wheelchair user asks for it and patiently waits for it to arrive. The ramps are so steep that no wheelchair user would be able to wheel herself up or down the ramp. In fact, they’re too steep even for a comfortable walk. At many places, there were heavy glass doors which could only be swung open manually. They had only one disability-friendly room and they couldn’t offer a hard mattress there. They explained that they only had hard mattresses the size of a single bed, and the disability friendly room had a double bed. People with lower back issues usually prefer hard mattresses. The hotel didn’t consider that, just like it ignored all other accessibility needs. This is not just a matter of empathy. It is bad business. What business sense does it make to spend on ramps that don’t do the job?
Even some of the top hotels I have been to across the country, had similar issues. Every one of them had only one room designed as a disability-friendly room. Yet, none of these special rooms were actually disability-friendly. None of them considered many disabilities like blindness and deafness. Mobility impairment was the main focus and even for that, the rooms were not fully accessible. I could hear the walls whisper the underlying assumption in every design. The designer didn’t expect a person with disabilities to travel independently. They are always expected to be escorted.
From disogyny to kindness
Like me, you may be wondering as well why all rooms are not disability-friendly. Wouldn’t it be easier for other guests, too? Those with a slipped disc, lower back ache, knee pain, sore neck (I can go on). Wouldn’t it be easier for the elderly? Wouldn’t it make more business sense to offer more comfort, especially in the luxury hospitality sector? If all rooms were disability-friendly, we wouldn’t have to frantically ask for it. We wouldn’t feel so ‘different’, so ‘special’. You can design to integrate, you can design to include, or you can design to disable.
So, why are these very evolved businesses not making enough business sense? Probably for the same reason Halodale was not very inclusive even as she works for the inclusion of women. Shrinath, a dear friend, calls it the problem of ‘disogyny’. We have coined this word to mean the hatred of, contempt for, or prejudice against people with disabilities. It enforces ableism by punishing those who reject an inferior status for people with disabilities.
Disogyny is systemically fanned. It has strong roots in our socialisation which emphasises homogeneity. We are made to think all our wants and needs are same and any difference is stigmatised. How often do we ask our guests if they have any food allergies before serving them? The person with allergies is expected to proactively ask and often gets something completely different from others, often served much before or after others. This is a small example from everyday life that shows how deeply the notion of uniformity is entrenched in us. It gives rise to assumptions, which we think are universal truths. But there is only one universal truth: kindness. Kindness doesn’t assume. It only asks “how can I help?”. Having that space to ask for help, the way you need and want it, is real empowerment.
While laws can help to push infrastructure to be inclusive, and nudge some thinking, it is people and thoughtfulness that can truly integrate. Thoughtful business is good business.
Soumita Basu is the founder CEO of Zyenika Inclusive Fashion, a company that designs clothes for all body types and physical abilities. Her work at Zyenika has been recognised with the Entrepreneurial India Award, 2021. She is the India Inclusion Fellow, 2020 and recognised as an Industry Disruptor by DO School, Berlin, UNWomen and the European Union. Soumita started her career as a journalist and then specialised as a social development practitioner and researcher, particularly in the domains of livelihoods, governance, and heath. Soumita’s focus has always been on cross-cutting issues like gender, inclusion, and equality. She is waiting for the publication of her reimagination of popular fairytales with a feminist lens. Soumita has earned a PG Diploma in Journalism, from Asian College of Journalism, and a Masters in Development Studies from ISS, The Hague, Erasmus University Rotterdam. She was awarded a fellow position at the Netherlands Fellowship Programme.