Ulgulan Talks! : Interview with Anjali Vyas
In this inaugural 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 with Anjali Vyas, a young woman aged 29 from Bhandara, Maharashtra, primarily regarding the impact of climate change in her life in reference to her disability and beyond.
Anjali is a British Council-certified IELTS Trainer. She is a member of the MS Society of India and at present, working as an NCPEDP- Javed Abidi Fellow on Disability. She has completed her B. Tech in Chemical Engineering from Amravati University. She is proudly living with Multiple Sclerosis since 2014 and was named the India MS Person for the year 2021. Anjali can be reached out through her LinkedIn profile.
This interview was conducted in the first week of June 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.
Hello Anjali, please talk about your life journey in some detail for our readers.
I was born in Mumbai and was raised in Bhandara, a small town near, Nagpur. I was born as a premature baby and was suspected as a patient of leukemia, which was later announced incorrectly. Although, after spending some time in an incubator, I was fine, I have always had low immunity and I had been anaemic for a long time during my childhood. My father is a Technician and works for a Private Steel Company in Bhandara, hence I completed my primary and secondary education in Bhandara. When I turned 18, I left my hometown to pursue Chemical Engineering. During Engineering too, I had fallen sick and required hospitalisation a couple of times.
In 2014, When I was in the final year of my Engineering, I experienced temporary vision loss which was later diagnosed as a symptom of a neurological disorder, Multiple Sclerosis. After successful completion of my Engineering, MS made me take a break for a year and during this time, I learned more about MS and its challenges. My treatment cost was hefty (₹ 30,000/- per month) and still is, which is why I am still dependent on my father financially. As I learned that no insurance policy covers MS and that even my father’s Corporate Insurance denied my reimbursement, I felt helpless. It also made me realise that there might be many people living with MS who might not be even able to afford the diagnosis as there are multiple tests involved in the diagnosis of MS. There was no awareness of MS even amongst the doctors.
When I started working in 2016, I wrote a letter to the Prime Minister of India requesting affordable treatment and research on MS in India. I was surprised to receive a response from the PM’s office after 7 months, which stated that my case has been disposed of and has been sent to the Department of Pharmaceuticals. I was happy to read the response, but I still filed an RTI to seek an update on the action.
In the year, 2018, when I relocated to Pune for my work, I joined the MS Society of India, Pune, and have been volunteering and advocating for the rights of persons with MS since then. I served as the Hon. Joint Secretary of the MSSI Pune for 2 years and now a part of the National Advocacy Team of the MSSI.
I have always been a happy-go-lucky, confident person, which has made me push my boundaries each day. Today, I am 29, and a part of a diverse group of persons with disabilities, learning from each one of them.
Please talk about your condition/disability and comorbidities, if any, in some detail.
I live with an autoimmune, neurological disorder, Multiple Sclerosis. It’s a disease of the central nervous system which affects the brain & spinal cord of an individual. In MS, the immune system, attacks the myelin sheath (the protective layer) of the neves, because of which, the damaged nerve of the respective body part gets dysfunctional, either temporarily or permanently (subject to treatment/hospitalisation).
While MS is incurable, its symptoms can be treated/managed with medications, physiotherapy, or both. Multiple Sclerosis, a neurological condition, has many symptoms, most of them being invisible. The apparent symptoms of MS include vision loss, double vision, and walking issues.
However, other invisible symptoms are fatigue, urinary/bladder incontinence, tingling, numbness, muscle spasticity, cognitive dysfunction, pain, and heat sensitivity. The severity of the symptoms can vary from person to person as MS affects every person differently. MS is not fatal, congenital, hereditary, contagious, and not always disabling. But the invisible symptoms affect the quality of life of all persons with MS.
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.
People with MS are always advised to avoid/stay away from extreme hot and cold temperatures/climates as they can aggravate the symptoms of MS. The October heat is also a bothering period. Even though the symptoms affect my life on an everyday basis, Summers aggravate fatigue, anxiety, and tingling, while in winter, I experience spasticity issues accompanied by pain. I also live with Migraine, which is a terrible part of MS. During heatwaves, the Migraine sometimes elevates to such an extent, that I need hospitalization. This further impacts my work life. Further, the October Heat aggravates the symptoms of Multiple Sclerosis because of which I feel lethargic throughout the month.
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 from your own personal experience? Please provide a personal account if plausible.
Climate change to me means flared symptoms. I have to be extra careful each time, I step out of the house. In the past nine years of living with Multiple Sclerosis, I have observed and experienced climate change closely, especially since 2019. I personally feel that the rise in temperature has impacted people with disabilities and will continue to impact, not only their health but mental well-being. This can also have an effect on the work/employment of PWDs.
For instance, when I first started working, I was living in Nagpur, one of the hottest cities in Maharashtra, which made my MS symptoms worse and resulted in a relapse. Following it, I decided to quit my job as the climatic conditions were unfavorable for me. I later relocated to Pune because it had a better climate.
Please tell me about any measure/action you took 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.
Since I face spasticity issues in winters, I use a heating pad to keep my back and legs warm, however, I have to be careful, as sometimes, excess warmth can trigger and cause inflammation in my nerves. In addition to that, I avoid eating ice cream and also avoid traveling in summer.
This was Anjali Vyas talking about her life journey and 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 story.
Abhishek Kumar is an NCPEDP-Javed Abidi fellow on Disability who is currently working on the “Impact of Climate Change on People 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!’.
