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.
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.
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