Ulgulan Talks! : Interview with Kavya Poornima Balajepalli
In this fourth interview of The Sangyan’s ‘Ulgulan Talks!’, an endeavor to voice the issues of the larger interest of ‘We, the People’, Abhishek (interviewer) talks to Kavya Poornima Balajepalli, a young woman aged 26 from Visakhapatnam, Andhra Pradesh, India, about her life journey, education, disability, climate change, and beyond.
Kavya is an Architect. She completed her Bachelor of Architecture (B.Arch.) from the University of Mumbai in 2021. At present, she is working as an NCPEDP- Javed Abidi Fellow on Disability carrying out advocacy activities on Accessibility in Public Spaces of Visakhapatnam by addressing the gaps in the framework of the Architecture Curriculum with a Motto of “Design to empower everyone to experience everything”. She is a person with late visual impairment living with IIH since 2017. Kavya curates Poornamidam — an endeavor focused on issues concerning disability, universal accessibility, architecture, and beyond.
This interview was conducted in August and September 2022 through online mode in oral and 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 Kavya, please talk about your life journey in detail.
I am Kavya Poornima Balajepalli, a 26 years young ambivert with a bright smile, who loves to experience joy in little things in life. A trained Bharatanatyam dancer, an art enthusiast with a passion for all art forms. Painting, tactile art, sketching, craft work, singing, and playing kalimba are a few to name. Exploring the second phase of my life through a keyhole.
As a child, growing up in a joint family was something that made me understand the collective approach towards life yet having different perspectives. Later, dividing into a nuclear family made me realize the importance of financial management, sacrificing something to get another, setting up small goals while dreaming big, finding happiness in little things, and so on. When moving from a small town in Andhra Pradesh to Mumbai, it was a major transition happening with my graduation, from facing regional discrimination at college during the initial days to becoming one of those reliable persons in the class till the end, my adaptability helped me to manage through all those ups and downs.
“There are decades where nothing happens; and there are weeks where decades happen” and the second week of August 2017 was one such in my life. While I was pursuing my final year in B. Arch., I was diagnosed with a rare Neurological disorder (one out of a lakh) named Idiopathic Intracranial Hypertension (IIH) due to which I suffered sudden vision loss in both eyes. It was a challenging time physically for me, mentally, and financially for my family to cope with the sudden change, but in return, this new phase of life has given me courage, a positive attitude, and tons of confidence to me as a gift for a lifetime. After those life-changing health challenges, I had nothing but time for myself and my thoughts. The period slowed me down and helped me to be more mindful, and minimal, embrace solitude and find happiness in the dark. The only thing that disability took away from me that I still miss is watching skylines and gazing at stars.
Since childhood, I have always had this hobby of observing my surroundings. I was brought up in a couple of centuries-old slope-roofed ancestral homes with multiple courtyards and lush green gardens around. It was very exciting to compare the buildings in the streets to the colonies in my town. That interest developed even further when I started traveling to different places for dance performances across India. I always used to like the human interaction, cultural diversity, and role of a backdrop in the story or even in a film. I was fascinated by the vernacular styles, and old heritage buildings, and those interested me to learn more about the link between art, nature, and science through architecture.
Right from my childhood to my college days, I have been a star performer in all dance forms, music, and anything related to arts. There wasn’t a kind of extracurricular activity that I didn’t excel at. The kind of travel freak I was, who had a bucket list like any other teenager.
The transition phase was a big blow to my family and a few close friends as many of my friends are still not aware of it. Long story short, during the following year 2017–18, I underwent five major surgeries among which there were repeated spinal shunt revision surgeries as a part of the management of my incurable condition. For those of you who don’t know, the shunt is a device that is surgically placed in the brain or the spine to help drain cerebrospinal fluid and redirect it to another location in the body, such as the abdomen.Yes, it’s as painful as it sounds but life has taught me the art of acceptance well.
After endless visits to the operation theatre, I am finally surviving with my hopefully forever VP shunt baby since August 2018 and taking care of it each passing day. Although it limits my mobility and activity throughout, it gives me so much in return. These four years have been a challenging time physically, but in return, this new phase of life has given me courage, a positive attitude, and tons of confidence to me as well. When I first woke up in a doctor’s clinic after being unconscious for hours, I didn’t know such a wild ride was awaiting ahead.
After three years of quarantine due to Osteoporosis and surgical recovery, I resumed my final year of B. Arch in early 2020, when the University and my college finally agreed, a black swan event hit all of us — Covid19 and made the entire world go quarantine, to be my company.
After spending many sleepless nights, hard work, ups and downs, fighting health challenges, and struggling with disability and pain, I have completed my graduation in architecture. Amongst all the pain it has given me, my health condition has truly been a blessing. It gave me a perspective — it’s more about putting the negativity that surrounds us at bay, benefiting from my traits, and enriching my inner world. I want to build a purposeful life for myself, where I contribute to self-development every day.
And fortunately, I got an opportunity to work and contribute to an inclusive society as a fellow at NCPEDP Javed Abidi Fellowship on Disability. At the beginning, I was very apprehensive and skeptical about joining the fellowship. The ones from the disability sector I reached out to for advice even discouraged me or rather recommended me to go for safer career options than wandering into the unexplored territory but then one that always kept me determined to take up this challenge (as I was new to both the disability as well as the accessibility sector) was my inbuilt attitude of “why to reject even before giving it a reasonable try?”.
Many dimensions of my disability
Invisible Battles
Travelling was a part of my life until the day I acquired my disability. Life has changed completely. It has made me sacrifice most of my interests and travel was one of them. Air travel is the only safe and fastest travel option for my vulnerable state. At least that’s what I thought until the day I traveled. I struggle traveling not only because of inaccessible transport infrastructure but also owing to a lack of awareness. I know that it is a mandatory process to go through the security check at Airports for everyone but in my case, I have a Programmable Brain Shunt implant to manage my Neurological Disorder, and the magnetic field disturbs the program set which further leads to the imbalances in the Brain Pressure (ICP).
The attempts to convince the security to do a manual check instead of using a Magnetometer/metal detector often become a hassle to prove through my medical history and reports. The security checks and use of these magnetometers/metal detectors are now in service at many public places as well which further hinders my experiences.
Thus, there is a need for sensitization on reasonable accommodations in the transport sector. Travelling has always been overwhelming because the shunt is invisible just like the rare Chronic Neurological disorder (IIH) is.
Disability and Adaptation
Neither my disability nor my neurological condition is visible, which made it difficult for me to make people understand that I have a disability. For example, whenever I travel, my mother accompanies me as my caregiver and at times, it’s challenging for her to make space for me in the crowd.
Given the ableist culture in the society, I started using the white cane, to carry wherever I travel to avoid unnecessary conversations and convincing, more to be recognized by the public as a disabled though it doesn’t help me much on the inaccessible roads, potholes, uneven surfaces everywhere that becomes dangerous for my brain shunt implant.
Changing Bases for the Better!
After acquiring my disability, I moved to the nearest city with the hope of accessing good healthcare services, better connectivity, and other online facilities where using apps for basic needs could make my disabled life easier and independent. Being completely dependent on these apps for daily needs like groceries, medicines, etc. has become part of my life. Often faced several issues as the app interfaces are not user-friendly, descriptions provided for the product were hardly accurate, returning or exchanging would become a major issue apart from the delivery, and seeking help from my mother and other family members made me dependent upon others.
There are various apps for different purposes in the market for the visually disabled, which is always confusing for me as a person who acquired vision impairment late in life. I take such experiences as an opportunity to make it an advocacy tool to complain about accessibility and sensitize the service providers. I often ponder upon questions like “Why can’t we use the same apps as the non-disabled?”, “Why can’t there be a set of standardized applications that can accommodate all the needs of the visually disabled available for free?”, and much more.
Compromised Career
In search of pebbles to pave a path, I developed this condition when I was in my final year of graduation. After having a series of surgeries and recovery spanning over two years, when I expressed my interest in restarting and pursuing my education, my family was not in favor because of the visual impairment, though they supported me after seeing my passion and determination. Not many supported my decision to continue, but my mother and brother stood by my side and my professor who believed in me agreed to guide me in what I wanted to do against all the odds. Though I faced institutional hurdles apart from the atmosphere where everyone doubted my abilities, it was my will and my support system that helped me sail through the storm.
Going ahead I faced the puzzle game of people asking me, “how can they find a way for me in architecture?”, “what would I do after finishing my graduation?”, “what if I end up making a disaster with my architecture career because of my disability”, and so on.
Due to the lack of awareness and sensitization at the institutional level in providing “reasonable accommodations”, students like me suffer and face discrimination. I was asked to quit architecture when I acquired my disability as then people questioned my ability to make a professional career in architecture primarily because of the nature of my disability that is contrasting with my professional training. At times, I used to even get frustrated because of the denial from people doubting my credentials of working in architecture and physical accessibility given my visual impairment.
According to some from the architecture fraternity and the disability community, it is impossible as I cannot see and I cannot use the architectural software even after learning a screen reader because they are not compatible. I am still being judged and advised to change my career path and pursue something “less challenging” like arts and government jobs that will provide me a “better life”.
Disability and Safety
I would like to share a small instance, while I was doing my second-year architecture, I met with an accident and fractured my leg. I had to write my semester examination and the room was on the top floor. I had to seek help from students who were using stairs in the absence of a functioning life. And they happened to be men and that situation was more of a helpless state when they grabbed me and lifted me without any concern and that too in front of my mother.
When this was the case for a girl with a temporary disability, imagine the role of accessibility plays in women's safety. They are interconnected. As women, we are being impacted by inaccessibility and safety at the same time. Even more for women with permanent disabilities because we’re in a way, bearing double minority identities like patriarchy and ableism.
Disability and Superstition
I lost my eyesight and at the same time, this bedridden condition happened to me and all surgeries were happening without any clue of any reason about everything going on with me. This idiopathic intracranial hypertension (“Idiopathic” means the cause isn’t known) further gave the scope for random theorizing about the plausible reasons (including black magic) that may have caused this and consequently random irrational solutions to cure for the same as well. There were even theories like someone close to you is jealous of you and thus this happened and with the right rituals, things can be amended.
Further, as I used to travel forts and monuments (as part of my work related field visits) and that too in loose hair so that might have also affected me as that probably attracted the negative energy. Also, the fact that while traveling during my periods and as I was dealing with PCOS (continuous bleeding among other things) might have made me fall sick.
Polycystic ovary syndrome (PCOS) Episode
I was diagnosed with PCOS in 2013, though my symptoms were present even before that. After the diagnosis, it was hardly discussed because it was considered taboo, mainly among males. Sometimes, I tried to talk about it but then it happens to be followed by awkward silence. Later, when I did my internet research, it was filled with negative information attached to this condition. Earlier it was considered that PCOS may result in infertility, difficulty conceiving or being prone to miscarriage, and much more.
Another concern was that if the relatives and extended family members get to know about this condition then it would be difficult in finding matches because everything looks “normal” from the outside, it’s better kept that way. As rumours suggested, if one becomes infertile because of PCOS then there is no point in marrying.
I was brought up in a small town (Srikakulam) where we hardly even discuss menstruation. Although, there are traditions to celebrate periods as a symbol of fertility (like Rajaswala: Andhra’s festival celebrating menstruation).
I used to talk about periods with my brother who in fact explained to me all about PCOS. I had also started discussing PCOS with my circle including both boys and girls, as I was never ashamed to talk about this because it’s a natural phenomenon. Few used to still comment “how can she even talk about all these and that too among boys?”.
After the diagnosis (my first medication was allopathy which didn’t work for me, then tried Homeopathy and Ayurveda), while using my medication people used to ask in my college “What is this?”, “What is that?”, “Why do you use this?”, and I used to share my diagnosis story with them concerning PCOS and they often happen to curiously ask “what is PCOS?” and I used to explain. One who used to listen patiently used to understand while one who doesn’t often share stupid advice like “you have to be more active and come participate”, “just forget about it”, “it’s okay, it’s fine” and so on.
But for me, it was more about continuous bleeding so I couldn’t manage to go to college and even miss my classes at times. I also developed other issues like weakness and headaches and on and off one and other issues which happen to badly disturb me.
PCOS is different for each individual and mine was Menorrhagia (continuous and heavy bleeding). It is not always because of infertility, obesity, or genetic carry-forward. This gave me thoughts like “why me?” and I kept wishing that it would get regular as it used to disturb my whole work cycle and I constantly felt tired and irritated. This also hampered in pursuing my interests like swimming and traveling. Most people were not sensible and understanding about all this. They often had a judging face and passed comments like “I have some unusual thoughts in my mind which I shouldn’t think about as that triggered this condition”.
As most people didn’t even have a clear picture about periods, they were often theorizing what could have caused this to me. This further adversely affected my field visits, overnight works, final submissions, etc.
Disability and Apathy
During the initial days of surgeries when I was in the ICU, my nose was packed as one of the surgeries (Optic Nerve Sheath Fenestration) was done through my nostrils. I was kept on fluids for a week and advised to take water in short intervals. The only way that the staff could offer water was by dipping a cotton ball into water and squeezing it in my mouth so that I could gulp a few drops. Since I could not see, I used to rely on the voices around me to seek help.
The process was exhausting for the staff to attend to, and they used to silently avoid my calls and kept me waiting for hours before seeking their assistance which made me feel helpless.
Talking about my dogga, it was all about visiting him just once a year during the summer holidays as back then I was living in Mumbai. Later on, after acquiring my disability, in the initial months, I was in Mumbai and when I was shifted to Vizianagaram is when I heard him barking, howling, and wagging his tail to welcome me. He used to be very excited and jump and shout in happiness. All this somehow gave me the comfort of someone being there for me even when many deserted. When I started to get settled within this new phase of my life, he was the constant one and my chatterbox. In the beginning, he was confused but with time, he somehow understood my condition. Further, when he met with an accident, I helped him in his recovery and it felt like we two were there for each other.
Later, I didn’t get much chance to overthink and ponder negativity as my Snoop kept me involved and busy by cheering and playing with me and making sure that I feel comfortable. He helped in my recovery as I wanted to get better so that I can spend more time with him. Because of old age, he also started losing his eyesight and became weak but his childlike attitude taught me to live in the moment apart from many other lessons.
Disability and Marriage
There were instances during my studies when people used to send marriage proposals through some relatives and in fact during my graduation, my family even had the thought of getting me married and continuing my studies after that but I rejected those proposals as I wanted to focus on my career. My relatives used to try to convince me and my family about the proposals.
After my disability, these people who were desperate to get me married suddenly lost their interest as they felt sorry about my condition and situation and soon vanished which was a welcoming change and felt at peace.
Post my disability, even the ones who still talk about my marriage and even got some proposals had this idea that I should marry someone who is like me — a disabled person or someone who is way older than me and so on.
Art and Craft
Art exists to help us live creatively so is a disability. Post my disability, I tried my hands at my hobbies. Initially, I started with sketching which was not very comfortable and started exploring painting in different mediums (started using my fingers, understanding the colors with the help of my mother and imagining the outcome, and tried using matchsticks, toothpicks, etc. to feel the surface later started using brushes, sponge or cotton to paint) though it takes a lot of patience with the physical limits I have, I enjoy doing and getting better at it every time. Within my limitations, I started tapping my hands to the music as the dancer in me always explored different ways (tap dance, sitting choreography, etc.) to express myself.
Family
So talking about my brother, in Telugu we call Anna (elder brother) — Aa is from Amma (mother) and Na is from Nanna (father) (the sum up of Amma and Nanna), but my brother is more than that to me. It’s really hard to describe him, be it pre-disability or post that, be it my studies or treatment or rehabilitation and whatnot, he is the sole reason behind everything. When I was taking my baby steps, while trying to sit or walk, his support and strength were always there. And that kept me going through thick and thin. He played the role of my father which my father couldn’t (due to his disability), and stood strong through the crisis. We don’t exchange our feelings much about each other but understand best.
My mother is a superwoman, the strongest of all. She is full of love, adaptability, and sacrifices. The importance she gave to our education, the vision she had for our future despite being in not-so-favorable conditions that she imbibed into us is what kept us standing high. If my mother and brother wouldn’t have been there for me and with me then I don’t know where I would have been as can’t even imagine a life without them.
The Divine Interference
I feel some connection with Lord Venkateswara. He was in my thoughts before my surgery and I promised him that if I get better I will visit Tirupati and donate my hair which is a familiar belief. But it couldn’t happen right away. My condition was not supportive enough for my travel initially but later after a series of surgeries (2017–18), I went to meet him after my brain shunt and the subsequent recovery. During my brain surgery, there was this funny incident where the doctors informed me that they need to shave my head for a surgical incision for which I requested them to shave just the required area. They thought that I am making this request because I am ashamed and afraid of my looks post head shave while the reality was my promise and I couldn’t break that.
Post my brain shunt surgery, I went to Tirupati despite it being a challenge and it was only Lord Venkateswara who made it happen given the difficulty in traveling (there is this saying that you can’t see the lord whenever you wish but only when he wishes). As promised, I felt at peace after successfully completing the task with his blessings. The significance of him in my life goes beyond words.
Charaiveti-Charaiveti
The dreams that I had before acquiring my disability were so contrasting with the life I am living right now. For instance, traveling has been my second favorite interest after dancing and my condition has made me compromise on both of them for some or other reasons. As a young girl, I had this dream of traveling to different places, understanding different facets of the cultures while living among them for a substantive time, and learning from their traditional knowledge while carrying out my profession as an architect to learn the local techniques and work on them.
However, traveling for me has become very scary as traveling even for a couple of hours is very challenging and irritating because of my shunt and pressure changes. The journey from my home to the other place is very tiring as I feel like returning to my home as soon as I go out rather than being excited about the journey and the destination. I still love traveling but not the experiences and that’s how I have made my choices. With the changed scenario, I am trying to explore all of them through other means.
But now I have started embracing whatever is thrown to me by life and that’s what I learned from life. Nothing is permanent except for what is given by life itself and we must be content with that only. And this approach made my life very easy as I don’t have any regrets now. I still have dreams but those desires are subject to the pragmatism of life. It’s not about limiting myself but being realistic with my approach. I feel I am living a dream just right now where I am exploring new avenues every day without being worried about the future and limited by my disability.
I have this dream about having a vernacular home for myself near a water body, earning for parenting my pets and plants, continuing my music and dance in ways that I can, painting once in a while, documenting my old vintage home, and many such things.
Please talk about your condition/disability and comorbidities, if any, in some detail.
I live with different conditions which affect me differently. To begin with, as a child, I struggled with breathlessness, due to asthmatic attacks because of weather and water changes during floods/heavy rains as we used to get mud water in our municipality during the rainy season. During my teenage, I was diagnosed with Polycystic Ovary Syndrome (PCOS).
I also live with late visual impairment due to Optic Nerve Atrophy which was caused by Idiopathic Intracranial Hypertension (IIH), a rare Neurological disorder. I am having 2% keyhole vision in my right eye and 0% in my left eye. I survive with a VP Shunt as a part of management for my incurable condition while I also developed osteoporosis, both of which limit my mobility.
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.
Extreme weather conditions are quite challenging for everyone but for vulnerable groups like people with disabilities, it gets even worse as climate change have a threat multiplier effect on us. Extreme heat and cold have their toll on my overall health with compromised immunity due to PCOS, IIH, and Osteoporosis.
The cyclones have a major effect on intracranial pressures (ICP) which often elevates the headaches and hampers my productivity. This affects my efficiency at work resulting in my inability to travel, sit for long hours, miss on doing committed tasks, and attend some important events among other opportunities and capability deprivation.
These extreme weather and climatic conditions often lead to relapses, and flare-ups of my condition resulting in the need for health care management like medication, programme corrections for the shunt to maintain the flow, and extra care. Invisible conditions like these are looked up with a different lens as they are not reflected on the body physically and thus often go ignored and not accommodated.
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 personal experience? Please provide a personal account if plausible.
I have learned that living at high altitudes and altitude changes aggravates and deteriorates my condition. So do cold and major barometric changes like grey skies, high humidity, rising temperatures, and storms can also bring on headaches and low pressure. Pressure changes that cause weather changes are thought to trigger chemical and electrical changes in the brain. This irritates nerves, leading to headaches and worsening my condition.
Barometric pressure headaches occur after a drop in barometric pressure. They feel like your typical headache or migraine, but you may have some additional symptoms, including nausea, vomiting, and increased sensitivity to light.
When the Barometric Pressure is high, the pressure pushes more against our body and limits how much tissues can expand. On the other hand, when the atmosphere’s air pressure is low, it allows our body’s tissues to expand more — putting more pressure on nerves and other parts of the body.
For my PCOS, extreme weather conditions affect the hormones, which disturbs the treatment, causing heavy bleeding cycles, body ache, cramps, and stiffness which is interlinked with my IIH symptoms, causing high-pressure headaches due to elevated ICP levels. Monsoons and cyclones cause relapse in my condition making it difficult to manage. Apart from the extreme conditions, altitudes also adversely affect the ICP. All these factors act as barriers and affect the place where I can live, travel, and work.
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.
The concepts like Climate Responsive and Universal Design are part of the built environment in India as an ancient practice for ages where the system of the joint family was an integral part of Indian tradition and the houses were constructed with vernacular construction techniques (use of local materials and methods and adaptive to local weather and climatic conditions) that had the design consideration for elderly, children, women, and persons with disabilities. It can be argued that the concepts were not directly expressed but they were well embedded in Indian architecture.
However, with the influence of western models, the approach to building design has now changed in India. With the rapid and mostly unplanned urban development, the built environment has resulted in major concerns surrounding the climate resilient and inclusive architecture.
Any further comments you want to make concerning climate change and disability?
Reasonable accommodations depending upon the needs of each individual could help in providing a quality of life with dignity for persons with disabilities. Having flexible working hours at the workplace by providing work-from-home facilities would help in limiting exposure to extreme weather conditions and inaccessible infrastructure.
Further, limiting the use of all other factors affecting climate change in daily life like cutting down the use of building materials which are absorbing heat by creating heat pockets in the concrete jungles of current developing urban spaces, adapting to sustainable lifestyle practices for healthy living, and educating future generations regarding these important issues are few essential shifts for the moment among others in respect to countering the impact of climate change concerning people with disabilities and others.
This was Kavya Poornima Balajepalli talking about her life journey and her experience with disability and climate change among other things. We, at The Sangyan and Ulgulan Talks! thank her for giving her precious time and an opportunity to know about herself and 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!’.
