Ulgulan Talks! : Interview with Shikha Uma Agarwal
In this thirteenth interview of The Sangyan’s ‘Ulgulan Talks!’, an endeavour to voice the issues of the larger interest of ‘We, the People’, Abhishek (the interviewer) talks with Shikha Uma Agarwal, a young woman from Delhi NCR (India) primarily regarding her lived experiences with disability and climate change.
Shikha is a lawyer and did her graduation in B.A. LLB and B.Com. She can be reached at her LinkedIn profile.
This interview was conducted in November 2023 through online mode in written format. The due informed consent of the interviewee has been taken before the publication of the blog. Further, the ‘Right to be Forgotten’ of the interviewee shall be respected.
Hello Shikha, please talk about your life journey in some detail for our readers.
Hello, I am Shikha Uma Agarwal (my middle name catches the attention the most). Well, few years ago I decided to append my mother’s name to my name, hence two names! My legal profession keeps me tied up with legal and tax related matters during the day, so I calm down by reading during the night. Sometimes I don the hat of a writer (an amateur one) to pen down accounts and chronicles. A complete décor freak, giving different looks and feels to the corners of my home is nothing short of therapy for me. I was a born foodophile and it is during lockdown that I enhanced my culinary skills.
Cut to the present, I cook multi-cuisines and often experiment so as to provide gastronomical pleasure through my own mantras of inter-flavor marriages. I am an introvert for those I am not comfortable with, and an extrovert for the ones who I love dearly, and I can switch from being a complete chatter-box to mute mode in a fraction of a seconds; you can also blame this on me possessing a typical Gemini dual personality trait :)
Please tell about your condition/disability and comorbidities in detail.
I was 6 months old when I was diagnosed with polio. Soon after started the journey of what seemed like never ending visits to hospitals and treatments. Back then when I was barely a few months old, those visits and treatments weren’t something I understood, but it was really taxing for my parents to see their new born child suffering and having to endure that pain. As I was growing up I knew I was different, and the obstacles faced at every stage made it even more difficult to cope up. After a series of tests and with 0% muscle power I was finally told by doctors that I could not be cured.
We live in a country where religion plays a predominant role in almost every sphere of life. Having said that we are also surrounded by people who cast upon themselves the responsibility of distributing free-advise. Therefore other than medical treatments, there were several other remedies suggested by extended family members, neighbors and friends, ranging from offering prasad to God, to performing some rituals and even doing some kind of daan-dakshina (charity). Needless to say, for my family the only constant thought at that time was to do anything that could cure me, so they indulged in everything that was told to them. But nothing helped (not surprising though).
Hence my wheelchair became my permanent soul-mate right from the time I started to know about life. While growing up I only learnt to survive on wheelchair by learning the art of managing daily chores while sitting on it. My parents were sure that they didn’t want me to live a dependable life (to the extent possible), simultaneously I had this urge and confidence to become self-sufficient in every which way, that led to devising ways of performing daily activities on my own, even though how hard it seemed. The manner in which I was managing my life was a bit different, but helped me with a sustainable and most importantly a self-governing life. While the word ‘stand’ is common in day to day usage — such as stand-up, stand-up comedy, stand-ing ovation, stand-by, stand-up-to, and the list goes on…for me it’s an experience I never had. Rolling every second on wheelchair, life became a ‘roller-coaster’ ride in its literal sense to me.
As if this wasn’t enough, I started to show signs of scoliosis and had 65% curved spine soon after, I was about 8 years old then. A few years later I underwent Spinal Fusion Surgery, having a rod & hooks implanted next to my spine. This new addition was a permanent fixture inside me and wasn’t accepted that well by my body at the beginning. Round plaster casts were applied for complete one year which made body movements even more difficult. Lifting myself up to even shift from bed to wheelchair had become a nightmare, especially for initial few weeks. With the upper part of my body plastered, my studies took a major hit, and the next 3 years were not less than a battle. I used to find it difficult to even sit straight properly for hours and concentrate, so I was confined to home, study while lying down and orally gave answers which my mother used to write for me for school homework. The excruciating pain and restricted movements made me a dependent person, something that was not on my agenda ever. But as they say ‘When life gives you lemons, make lemonade’. So I pushed myself up, started to study, appear for exams and managed to crack them (this time not with flying colors) but even that low score left me with a great sense of pride and satisfaction.
The ordeal didn’t refuse to end here as something else was waiting for me. I had started to face severe hormonal imbalance and the tests revealed presence of multiple fibroids in uterus. I was advised by gynecologist to take medicines, but that only helped for a short while. The condition became worse on a winter night during a visit to a restaurant for my father’s b’day when I started to bleed uncontrollably and I had to be rushed to the hospital immediately. With non-stop bleeding my hemoglobin level came down to 5 which was almost life threatening. After a series of tests and scans my gynecologist confirmed that the only option was surgery. The fibroids were formed such that they couldn’t be removed so I had to undergo hysterectomy, i.e removal of uterus along with fallopian tubes. The surgery seemed to be a lot more complicated than my gynecologist assumed, thanks to my disability and almost numb lower abdomen part, therefore the laparoscopic process that should have lasted for about 45 minutes took almost 3 hours because my cells resisted the laparoscope and video camera inserted through incision in my tummy. The trial extended further post surgery that led me to stay confined to bed because I couldn’t lift myself up for next 2 weeks, as against a regular case where the patient is asked to stand and start normal course within a couple of days.
Even today, as a wheelchair bound person suffering with scoliosis, and overall 75% disability, living a barrier free life still seems to be a luxury because of accessibility issues that I have to face at every step. But lack of infrastructure and climatic conditions are one side of the story, the other obstacle that I have to deal with is the outlook that people carry towards us. Talk about schools, colleges, temples, parks, restaurants, recreational centers, and even high-class corporate offices — the story is the same everywhere. On one hand I have to compromise due to lack of infrastructure and facilities, yet on the other hand my skills and capabilities were often questioned and ignored, which means compromised career opportunities.
Till sometime ago I was not very vocal about my disability and the obstacles & experiences associated with it, but I realized it is significant to talk about it, as it will not only help in creating awareness of what we face and suffer, at the same time it will help provide for much needed solutions and an inclusive environment.
Does climate change and its induced disasters (read extreme weather and climatic conditions like heatwaves, cyclones, floods, etc.) have any impact on your physical health/condition? If yes, please illustrate on the ways it affects you.
Undoubtedly climate changes are proving a threat to everyone’s safety on our planet. Personally for me, extreme winters are troublesome as I bear severe back pain during this weather. The calf muscles and feet get swollen and inflamed during harsh winters, making it difficult to sit with legs dangling down. Hence I have to take breaks in between my work hours to lie down for rest and also limit roaming on wheelchair and rather stay on bed with legs straight, or any other posture that minimizes excessive swelling and resulting pain.
Rainy season is yet another chaos. The challenges seem tiny but for a wheelchair user, they are hard to survive with. Water clogged & slippery roads, potholes and poor drainage systems disrupt normal wheelchair movement, even makes me lose control of the chair. I have to take extra caution while transferring out of the car because the wet wheels prevent proper grip of hands on the wheels leading to imbalance. Soiled wheels during this weather make my hands also unclean which is not only unhygienic but also unacceptable. Climbing a wet ramp located at the entrance of a building causes slip of the wheelchair and difficult to roll on to the ramp. Often during rains we experience power cuts and most of the residential buildings till date don’t have power back up, in the absence of which lifts/elevators stop working. As a wheelchair user when I am inside any such building, I have am left with no option but to wait for elevators to resume working, or be lifted on wheelchair and climbed down by people in worst situations.
Does climate change and its induced disasters (read extreme weather and climatic conditions like heatwaves, cyclones, floods, etc.) have any impact on your mental health/condition? If yes, please illustrate on the ways it affects you.
There are multiple barriers that I face because of climate change effects on disability which go beyond physical barriers. Inaccessible environments, unfulfilled interests, compromising on basic needs or wants give rise to feelings of denial, anger, shock, helplessness and depression. Often a sense of social isolation and loneliness takes place, which precipitates mental health issues. Lately, I am experiencing obsessive compulsive disorder because of anxiety and fear of missing out on many aspects.
What do you think about climate change and its induced disasters (read extreme weather and climatic conditions like heatwaves, cyclones, floods, etc.) acting as a threat multiplier and resulting in capability deprivation (like loss of livelihood, migration, or additional medical expenses, etc.)? Please provide a personal account, if plausible.
Climate change can result in disaster in multiple ways, such as weather hazards, increase in the vulnerability of communities at large to natural hazards, ecosystem degradation, reductions in water and food availability. More so, the disabled community is at a greater risk because of deficiency of required support, economic opportunities, livelihood resources and access to means.
Narrating a personal incident at my workplace — during a mock fire drill activity at my office, the elevators were shut down and everyone was asked to evacuate the office premises within 2–3 minutes. Sitting on the 2nd floor of the office, I was lifted by few guards and carried down to ground floor. Very likely, the guards did lose their balance a couple of times which was threatening not only for me but for them as well, further it took much longer for me reach the ground floor as compared to others. In a real life situation and in the event of a fire outbreak, when it is said ‘protect yourself first’, imagine the dilemma of a disabled person who is left in an endangered situation.
Please tell about any measure/action you take to adapt and mitigate the negative impact of climate change and its induced disasters (read extreme weather and climatic conditions like heatwaves, cyclones, floods, etc.) in your life to avoid worse-off experiences (like avoid travelling during extreme weather conditions or certain medication, etc.)? Please provide a personal account if plausible.
Since there are no proper available measures to combat the effect of climate change on wheelchair user, I have reduced my travelling to avoid getting stuck in undesirable situations. I have switched to a hybrid working model because of various climatic effects that impact my health and restrict movements. I prefer to go out with my family especially to new locations because they are well-versed with my needs and understand my situation well.
Referring to the above incident, I now request my concerned HR or admin team to inform me in advance of any such activity taking place so I can either switch to a WFH or leave for home in advance. However, my greatest fear is how to approach such a situation if ever surfaced in real.
What else you think that needs to be done to counter the worse-off experiences of climate change and its induced disasters (read extreme weather and climatic conditions like heatwaves, cyclones, floods, etc.) and to counter the disproportionate impact of climate change and its induced disasters on persons with disability concerning their physical and mental health, work and livelihood, hunger and poverty, disability inclusive disaster risk reduction, etc. to ensure disability inclusive climate justice.
It’s high time that the needs and perspectives of disabled people are taken into account for effective decision making, strategic planning and implementation of policies in such a manner that an accessible and climate-flexible infrastructure, accessible transportation and shelter options are created for disabled people.
Any further comment you want to make in respect to the intersection between climate change (and its induced disasters) and disability.
As far as I understand through various analysis done and reports available, disabled people are experiencing more harm and disproportionate rate of mortality being displaced by climate changes and disasters induced by such changes.
This was Shikha Uma Agarwal talking about her life journey and lived experiences with disability and climate change. We at The Sangyan and Ulgulan Talks thank her for giving her precious time and an opportunity to know about her and her lived experiences.
Adv. Abhishek Kumar is an NCPEDP-Javed Abidi fellow on Disability currently working on the “Impact of Climate Change on Persons with Disabilities. The curator can be reached at <abhishek.ncpedp@gmail.com>.
The interview has been published on the blog of The Sangyan as part of its public engagement and discourse initiative called ‘Ulgulan Talks!’.
