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Blog Series: Re-thinking a crippled society

Re-thinking a crippled society – Part II: Inclusivity


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?

Image credit: Mahesh Basedia

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.

Categories
Blog Series: Re-thinking a crippled society

Re-thinking a crippled society – Part I: Productivity

This is the first part of a three-part series by Soumita Basu. Soumita is a social- development-practitioner-turned-entrepreneur. When she was diagnosed with an autoimmune disorder, her 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.

The value of my every hour

[By Soumita Basu]

“Now, I’m neither productive nor reproductive,” she said with a wry smile, skilfully turning it into a giggle. We were soaking in the warmth of the rare pre-spring sun beside the canals of Den Haag. It was a spontaneous meeting. We had a lot of respect for each other. What we lacked in chemistry, we made up for in our common quest to find our place in a world we had suddenly become alienated from. Words moved effortlessly as we sat beside each other on the wooden bench, munching on a mixed bag of nuts.

When she suddenly remarked on her productivity, I was staring at the tall, almost barren purple tree across the canal. I missed how the words looked on her. I turned to meet her eyes and found tiredness wrapped in smiles and giggles. A few months ago, she was diagnosed with stomach cancer. She wasn’t thinking of death. She was looking for life as she knew it for over four and a half decades. While I had fifteen less years to boost, my relationship with life was changing rapidly too. My (then) undiagnosed autoimmune disorder had started ruling much of any conversation.

Unless, they were with friends.

Friends bring out the deeper value of our existence. Something, we all need to cherish from time to time. Our value in the lives of our loved ones isn’t defined. Its sacred territory. This is the single most important thing that brings life to our days. But what about livelihoods? And the distinct identity we draw from our productive avatars? In a world where ones’ ‘usefulness’ is often judged by how productive they are, finding the space that allows you to be productive becomes imperative for ones’ existence. Yet, for most of us, it is also about existence itself. About the means to survival.

Image credit: Pixabay

Countries with strong social protection programs for the chronically ill or with disabilities are very few. While social protection programs ensure survival, it doesn’t give meaning to it. That can come only when we co-exist and co-create. Having chronic illnesses or disabilities systematically excludes us from having this feeling of contributing. It deprives us of a sense of belonging. Slowly the spiral of questioning our self-worth begins to grow. At every turn we ask if we are a ‘burden’. I had to restart my career in my mid-thirties when I acquired an autoimmune disorder and started to gradually lose my mobility. The more mobility I lost, the less work I got. And finally, I stopped working completely. I had no income, while the medical bills were piling. I leaned on my family. Anxiety started surfacing. I wasn’t worried about the constant chronic bulldozing pain that I experienced every second of everyday. I wasn’t worried about death either. I was worried about living, about being able to buy my medicines and put food in my mouth. I was worried about survival. I was worried and I was guilty. There are not enough words to suggest how guilt can engulf you without any trigger when you feel like a burden, when you cannot financially support your aging parents. In fact, your illness demands every penny ever saved as a family. Everyone told me I wasn’t being rational, especially since my family was so supportive. But it wasn’t about my family.

The world around me was not rational either. It only talked the language of productivity. It rated people based on a hazy relationship between input and output, where the output is very vaguely defined and the input is usually just reduced to the movements of the hour hand on our clocks. It’s completely irrational. Or at least very overpowering because most people usually cheat (often, themselves). In most white-collar jobs, people work unrecorded, and unpaid, ‘overtime’. News of burnouts have become common stories in any sector. We don’t just burn the mid night oil, but often ourselves in the name of passion, and dedication. However, when we work a few hours less, our compensation packages get adjusted accordingly. The relationship with our organisations and their employees is guided by mistrust, rather than faith. This mistrust becomes even more pronounced in case of persons with disabilities as there are often ill-founded doubts on their work-related abilities. The organisation-staff relationship is driven by ambition, instead of empathy. Completing the task gains importance over how that is achieved. Often, this alienates from the people of the organisation. It colours the people with monochrome, instead of multidimensional beings.

This doesn’t mean we should be without ambition. We need ambition to grow. It is important even for individuals within the organisation. However, we need to be driven by empathy at the core, with ambitions in the periphery instead of the other way around. A paradigm shift towards redefining our relationship with our organisations and redefining the identity of the organisation is imperative to be inclusive. Instead of focusing on linear one on one relationships with each individual staff and the organism, we need to build an organism as one unit with geometric networked relationships between the individual members. Here, tasks are not assigned to individuals but to teams. So, while the team completes the task, the individual members may contribute with ease. There could be the young parent needing to be back home early afternoon every day or someone who can work late evenings but needs a three week break every quarter. The design thinker with spurts of creativity and the focussed repetitive organised worker find equally comfortable space. Workspaces need to be designed to encourage collaboration instead of fanning the notion of survival of the fittest.

Being disability friendly demands a healthy environment. The culture of a place needs to be healthy and friendly for everyone before it can become disability friendly. In other words, being disability friendly and inclusive ensures a healthy environment for everyone. Not physically, but mentally and emotionally, too. It is an impossible feat to be disability friendly for just one person or a few select people. It’s a culture, a way of life, not something that can be practiced in silos. We need to rethink not hiring practices but also our work integration. Organisations truly invested in inclusion have started to reengineer their work processes to ensure more talent can participate.

The function of the society is to ensure its members operate at their full potential, creating a harmony that would otherwise be unknown. However, when the society choreographs its moves to only allow for a chosen few, it is not a healthy society. There are many people who have certain disabilities. Probably, if we look across the spectrum, we will find more people with disabilities than otherwise. Often, they might not even identify as a person with disabilities. Yet, the social structures favour the chosen few, and label others as marginalized. If we look deeply, even if there are people with disabilities, it is the society that’s disabled.

How do we evaluate the productivity of such a crippled society?

Our self-worth is silently driven by how useful we feel. I realised I needed to fulfil this existential need of mine. There was one year when I was completely without work; my sense of worth was shaken. I thought of the home makers. But they work at their homes, I thought. It was unpaid labour but at least there was tangible labour. I couldn’t do that either. I felt “neither productive, nor reproductive”. I took rescue in the locks of my hair. I cut them to donate to patients of cancer and alopecia. I needed to feel useful. I needed to be part of some story.


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.