Ulgulan Talks! : Interview with Kavya Mukhija
In this seventh interview of The Sangyan’s ‘Ulgulan Talks!’, an endeavor to voice the issues of the larger interest of ‘We, the People’, Abhishek (the interviewer) talks to Kavya Mukhija, a young woman from Jaipur, Rajasthan (India), primarily regarding the impact of climate change on her life with respect to her disability.
Kavya has completed her MA in Applied Psychology from the University of Delhi and is an organisational psychologist by education. Currently, as an NCPEDP-Javed Abidi Fellow on Disability, she is advocating for Accessible Tourism and simultaneously works as a job coach at v-shesh. Kavya also curates an online platform Namastey Disability, that works on Accessibility in Public Places and Tourism in Jaipur, India.
This interview was conducted in December 2022 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.
Please tell about yourself in some detail. Your life journey in essence.
Hi, my name is Kavya Mukhija. I’m 24 years old. I’ve just completed my masters in Applied Psychology from the University of Delhi, South Campus, where my specialisation was Organisational Psychology. Currently, I’m associated with NCPEDP as an NCPEDP-Javed Abidi Fellow on Disability and with v-shesh as a Job Coach.
On a personal level, I identify as an introvert, though I like interacting with people too (but at my own pace). It will be apt to say that I’m a rolling paradox. Prior to taking up my current profession, I was working as a freelance content writer after developing an inclination towards creative writing. I head the social media at The Anonymous Writer today, and also write stories and poems weaving my disabled experiences into tales. I’m a writer who likes buying books more than actually making an effort to read them!
I am someone who loves art, be it music or visual arts. I used to train for classical music and painting back when we were in Delhi. In school and college, I was an enthusiastic singer and rocked the stage with many group performances. With time, I also self taught myself calligraphy and it acted as a stress buster.
Other than that, I love travelling, visiting new places, trying different cuisines and being in nature. I find natural geographic beauty very pleasing and absolutely enjoy being strolling in gardens, markets, mall roads or even driving through ghats. Travel makes me feel alive.
Please tell about your condition/disability and comorbidities, if any, in detail.
I was born with a medical condition called Arthrogryposis Multiplex Congenita, AMC for short. It basically means that there are multiple joint contractures at birth. A joint contracture occurs when a joint in the body is restricted in mobility and movement. My wrists, elbows, knees, ankles, hips and shoulders are stiff and have limited movement. My mother told me when I was a few months old, I also had one of my hips dislocated.
However, although my limbs are in their usual position now, they weren’t like that at birth. Both my legs and arms were extended outwards and they had be brought back by using traction. This was done by using external force to bring both my arms and legs closer to each other over a period of time. As a result, I spent 3–4 months in the hospital after birth.
Over time, due to my constant and prolonged sitting, I also developed scoliosis. My spine has a curvature. As a result, I sit tilted towards my right side. Due to scoliosis, I have weak lungs and feel breathless after even a short instance of physical exertion. Recently, I have also noticed that sitting for 5–6 hours at a stretch causes my feet to swell up.
Due to AMC, my muscles lack strength and I use a wheelchair to move around. Earlier, I used a manual one. Today, I use both powered and a manual wheelchair, depending upon the requirement. Earlier, when I was younger, I used to walk at home with the help of a tripod. There also used to be a physiotherapy session every evening till when I was in grade 9. However, over the period it was financially taxing as the therapists charged more than 700–1000 INR per session.
Please talk about your experience with climate change (read extreme weather and climatic conditions like heatwaves, cyclones, floods, etc.) that affected or worsened your experience or condition. Please provide a personal account if plausible.
I was born and raised in New Delhi — the national capital also famous for its extreme climatic conditions. Though summers were far more tolerable, winters were hauntingly difficult. Since I don’t have any physical activity, my body becomes numb in response to extreme cold. My fingers become extremely cold and my legs are freezing cold. My toes become blue from the extremely chilly weather.
Back in school, I used to wear 2–3 layers of socks under my AFOs and shoes to keep my feet warm. But still it’d be numb. Usually, when one feels cold, the viable option is to cover up with multiple layers of clothing. However, that was not feasible for me as layers of sweaters and warmers restricted whatever little movement my arms had and made me feel frustrated from not being able to do basic things like eat food or drink water.
Exams become another nightmare because the weather froze my hands and I wouldn’t be able to write. I remember I had to blow warm air on my hands so that I could at least complete the exam on time. Even though I got compensatory time, it would still be a marathon to complete the test on time.
When winters reached their apex in the month of January, I would soak my feet in warm water to ease out the soarness. Sometimes, it’d be so cold that my mother had to massage my legs with warm mustard oil. Heaters were a constant sight in my house in winters.
We moved to Jaipur in 2016 as my father’s occupation moved there. Winters were such a relief! They are not so extreme. Although my feet and body still becomes sore, it is fairly manageable with warm sweatshirts and boots.
What do you think about climate change (read extreme weather and climatic conditions like heatwaves, cyclones, floods, etc.) acting as a threat multiplier and resulting in capability deprivation in your own personal experience? Please provide a personal account if plausible.
Over the years, I have experienced the climate becoming more extreme. Summers are becoming hotter and winters colder.
As winters result in deprived ability, extreme winters in future will only make it impossible to do whatever little I can. This also means that I would be increasingly dependent on either my family (parents and younger sister) or a professional caregiver to cater to my needs increasing my cost of living.
As for summers, the hotter weather makes it harder for me to breathe. I live with scoliosis and the curvature of my spine has caused my lungs to shrink a little. Increased temperatures and low ventilation put a lot of pressure on my lungs, causing breathlessness.
For me, my ability to function is greatly affected by the weather I’m in. Winters make my muscles stiff and spastic and simple tasks like writing or eating take a lot of time to complete, while extreme heat waves cause strained breathing. Hence, as climate change worsens in the future, it would be nearly impossible for me to function independently because of the capability deprivation.
There have been times when I have had to avoid going out because of the extreme weather and I’m sure it’ll increase as climate change becomes even more dreadful. Once while I was out with my family and friends for lunch, it rained and all of us got drenched. We managed to seek shelter but there was no way we could reach our car to head back home.
Another time, we had gone for a vacation to Jaisalmer in December 2018. We stayed in a tent and the entire night, my feet were numb from the cold. No amount of shawls and socks could even make them slightly warm.
When we were young, we used to go to Pune to our cousins’ place on our summer vacations. At that time, it would be the rainy season there but much better than the scorching heat of Delhi. I used to feel happy and was able to function to my fullest capacity.
Please tell about any measure/action you take to mitigate the negative impact of climate change (read extreme weather and climatic conditions like heatwaves, cyclones, floods, etc.) in your life to avoid worse-off experiences? Please provide a personal account if plausible.
As it gets very difficult for me to manage my disability during winters, I wear 2–3 layers of socks. At night, I use heat pads to keep my legs warm. My outdoor expeditions and bathing also reduce as winters get colder. If I have to travel during winters, I make sure to pack everything I need such as heat pads, extra pairs of socks and boots, caps, shrugs, and shawls.
In the summer, I try to keep myself cool by consuming cold food and increasing my intake of fluids. Summers, for me, are easier to manage.
What else you think that needs to be done to counter the worse-off experiences of climate change (read extreme weather and climatic conditions like heatwaves, cyclones, floods, etc.) in respect to your specific condition? Please suggest from your personal experiences.
Personally, I feel there should be more research on how climate changes impact AMC, the condition I live with.
On a general level, there should be inclusive disaster management plans for every city that could be implemented in the instance of a catastrophe. I also feel public places should have sheltered areas where people with disabilities or those with mobility impairments can take shelter in the event of rains or other such extreme climatic conditions.
There should definitely also be more awareness on the fatality of climate change and how detrimental it is to the lives of people with disabilities among other vulnerable communities.
Does climate change (read extreme weather and climatic conditions like heatwaves, cyclones, floods, etc.) have any impact on your mental health? If yes, please illustrate on the ways it affects.
Yes, it definitely does. According to psychological studies, a greater number of people experience low mood and depression in winters than in summers. This is known as seasonal affect disorder. The cause is that darkness and a gloomy environment increase the secretion of melatonin which causes low mood. This is also true for me. I dread winters because the heavy layers of clothing restrict my ability to function independently. As my body lacks physical strength, the extra layers of clothes make it further difficult for me to do things independently.
On the other hand, summers see a positive mood because my abilities and activities aren’t restricted. In summers, it is easier for me to function. As a result, I feel happier and more joyous.
This was Kavya Mukhija talking about her experience 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 lived experiences concerning disability and climate change.
Abhishek Kumar is an NCPEDP-Javed Abidi fellow on Disability who is currently working on the “Impact of Climate Change on Persons with Disabilities.” The author 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!’.
