Introduction to the Interview Series
The interviews seek to understand the stories of People with Disability (PwD) and their caregivers in the lockdown which includes their day to day struggles, coping/ negotiating with challenges, changes in their lifestyle, and learnings from the COVID-19 pandemic. Also, we are keen to bring the experiences of experts who are pioneers in empowering the disability movement in India. We will try to understand the existing as well as emerging challenges in the community of PwD in India.
The COVID 19 pandemic has brought upon us the immense task of reimagining our lives in radical ways. It has impacted our social life. Concepts like Work from home have become a common term suggested by a section of PwD community as a solution to their issues of employability. There are economic as well as psychological issues which have impacted the population in general. The pandemic and lockdown have also brought us closer to our families. There are several discussions which are taking place in these lines. In many ways, the so called ‘abled’ are facing the constraints that are pointed out by the community of PwD for a long time. It is a very crucial time where we delve into the experiences of People with Disabilities in the context of COVID-19 pandemic and their interaction with their families, peers and larger society.
Please tell us about your disability.
I was five years old when I was diagnosed with Steven Johnson syndrome, which resulted in partial visual impairment. I can see light and colours, but I can’t see physical forms.
Tell us about some of your school experiences.
I attended a special school for the blind until seventh grade, where we were taught all of the fundamentals that a visually challenged student should know, but I felt it was a closed group. We were at ease within our circle, but I’d like to point out that there was a reluctance to communicate outside of our group.
The educational standard was not up to par with that of mainstream schools. However, many activities, such as project work, which is common in schools, are not available in blind schools. There is a significant gap in the curriculum. The blind school does not offer the same range of subjects as mainstream schools. When I shifted to a mainstream school in eighth grade, I noticed the difference and realised I had a lot to catch up. If the curriculum at the blind school had been competitive, I and other visually impaired students would have been able to join the mainstream. Our country’s larger education system emphasises rote learning rather than personality development.
How did your interest in music begin?
I’ve been learning music since I was four years old, and my family has always supported me. I’ve studied classical music. This training has helped me in the creation of original tunes and music. Raga knowledge is extremely useful for recognising tunes and creating music.
How did you switch from classical music to rap and hip hop?
In 2018, I started listening to western music, specifically rap and hip hop. Bohemia had a profound impact on me. Pune also gave me the opportunity to pursue my interests further. I moved outside of Nagpur for the first time, which was both challenging and exciting. The college environment gave me the confidence to perform on stage and in front of a crowd, which was a significant improvement over the previous version of myself, who was afraid to even speak to others.Because I was raised in a Marathi-medium school, I needed to improve my English, which I began doing in 11th grade. I kept getting better. Hip hop gave me a platform to express my dissatisfaction with the system while also connecting me to other social causes.
What role did your family play in your journey?
My family was always there for me and helped me get through difficult times. My family has been the basis for everything I’ve accomplished so far.
What is your message to the general public about the inclusion of People with Disabilities?
In one of my hip hop tracks called ‘We are capable’, I have expressed my thoughts on this. This song discusses the society’s double standards, where we are constitutionally guaranteed equality, but PWDs, along with other marginalised groups, face discrimination.
When we see People with Disabilities in public, our first thought is, “How come they are here?” as if we are supposed to be inside our four walls. Nobody should have any preconceived notions about anyone else. Learn about their struggle first, and then form an opinion.
What is your message to People with Disabilities?
First and foremost, before discussing about People with Disabilities and the community, I would like to draw attention to inequities in policymaking and institution building in the context of PwDs. The services we receive are insufficient to help us get back on our feet. People with Disabilities must think outside the box in this situation. I challenged myself to stand out at every level. After graduating from the blind school, I moved to a school where both visually impaired and sighted students studied together. I moved to a mainstream school, where I was the only visually impaired student. After that, I went to a prestigious university in another city. I chose hip hop and rap because no other visually impaired people were taking it seriously. Exploring unknown environments benefits not only oneself but also others. When I won medals in the music olympiad for my hip hop in Sri Lanka and Dubai, it proved that people with visual impairments could pursue and succeed in this field as well. The harsh reality is that the world will only recognise you if you work effectively. When I say “get out of the defined system,” I have to prove that I gained something by challenging the system with my accomplishments. People with Disabilities will be able to challenge and overcome the limitations imposed by society if they think in this way.
Tell us a little bit about your and your sister’s disabilities.
We are twins. My sister Pragya and I were diagnosed with Retinopathy of Prematurity due to an oxygen overdose when we were five months old after my parents noticed rapid eye movement. Surgery was attempted, but nothing could be done by then.
How did you find your schooldays?
Initially, our parents took us to the National Association of the Blind (NAB) in R.K Puram, where we were taught Braille for reading and writing and Taylor frame for mathematics. After that, we went to Springdales School in Dhaula Kuan, which is a regular school. We were advised to bring a helper with us. We had Manni didi with us. Manni didi was with us. She used to go to the same school as us. She mastered Braille, computers, and taylor frame. She must have been 14 years old at the time and assisted us in school. Our mother took a NAB bridge course to learn Braille and tailor frame to assist us. The school campus was completely inaccessible. Peers were uninviting and didn’t want to hang out with us. Academically, we excelled and received high marks. In terms of other accomplishments, in 2006, when we were in Class 5, we were given the opportunity to inaugurate a book in the presence of A.P.J Abdul Kalam. We received Fisher Foundation Academic Awards in Class 8. We had the opportunity to interact with Pranab Mukherji in class 12th.
Could you describe some of your college experiences?
For our bachelor’s, we both went to Miranda House. Pragya got her bachelor’s degree in psychology, while I got mine in political science. The college was very welcoming and easy to get to. Here, we were able to make some great friends. Education materials, on the other hand, were totally inaccessible. We had to do it ourselves. As a result, we were unable to participate in extracurricular activities. We had to put in extra effort in school. In stark contrast to the schooldays, peer support was excellent. We were both accepted to the Tata Institute of Social Sciences for our master’s degrees.
How did you find TISS?
TISS was once again a wonderful experience. Pragya studied Clinical Psychology while I pursued a Master’s degree in Urban Policy and Governance. We were able to live an independent college campus life here. Every piece of reading material was available digitally. We went to Pune on our own for fieldwork and data collection. We learned how to be self-sufficient and proactive. Yes, we faced challenges, but we also learned how to overcome them.
Tell us about your present job.
Pragya is an Executive Trainee at Tata Power, and I work as a Project Consultant for Ernst and Young in the Water Sector.
Describe your relationship with Pragya and your family.
We are very close and the best of friends. We discuss everything. We have a small pet dog named Sparky. Our parents believe in us. We are all here because of the love and support of our families. They encouraged us to work hard in order to succeed in life.
Where do you see yourself in five years?
I hope to be settled in five years. I’d like to work for the government, either in civil service or in banking. Or, in the private sector, I’d like to progress in my current position.
What is your message to society?
The issue is that people believe that People with Disabilities cannot advance in life. This mindset must change, and society must become more inclusive.
Could you please tell us about your initial days of disability?
At the age of five, I was diagnosed with ADHD. Along with this, I have a learning disability. I also developed depression, OCD, and anxiety as a result of it. I went to the best school in South Mumbai, where the competition was intense. There were no mental health counselling services available. Teachers told me that despite my thirty years of experience, I would not pass even the first grade because of my severe learning disability, which included not reading, writing, or doing things that a ‘normal’ kid would do. I had to go from one doctor to another, therapist to therapist, psychiatrist to psychiatrist. I was later prescribed ADHD medication.
Share some of your school experiences.
I was bullied a lot in school because I could never fit in as a result of my ADHD, I couldn’t handle studies, and I didn’t have time for extracurricular activities. I was socially isolated. The boys on the school bus used to make me lick their shoes. There was even a Facebook campaign in 8th grade to ‘Ban Huafrid Billimoria.’ It was being passed around on college campuses. Such hatred in children was shocking. This campaign contributed to my lack of friends and the establishment of honest relationships in school. My peer’s parents suggested enrolling me in a special school. “It will be better for all of the children, Huafrid will be happier in his place, and other kids will be happier in their places, and there will be no incidents of bullying,” they said. Due to my ADHD and anxiety, I abused my school principal in 10th grade, which was wrong, but the school administration went out of their way to make an example of me. They forced my parents to apologise in front of the entire school. My parents were in tears on stage. On top of that, they suspended me indefinitely. Despite my learning and writing disabilities, I was not given a scribe for the 10th board exam. Despite the trauma and lack of support, I received a 77 percent on the 10th board examination. I didn’t change schools because I wanted to fit in with the school’s ‘norms.’ We (PwDs) must ‘fit in’ to the school’s ‘norms,’ rather than the school adapting its ‘norms’ to us.
How have you found your interactions with psychiatrists and therapists?
Most psychiatrists and therapists do not understand a person’s resilience and will put you on medication as a result.Few professionals understand individual needs and abilities, which I believe every person with a disability should have.
Tell us about the challenges you faced after graduating.
In my 12th grade, I received concessions and a writer for my exam. I passed with a distinction. Soon after, I started experiencing Dystonia symptoms in 2015, which worsened in 2016 and 2017. While my dystonia was worsening, I got into IIHM, one of India’s best hotel management colleges. I didn’t get any writers there for the internal, which is where I struggled. I hired a writer for the finals. Following that, after interning at a firm, they refused to offer me a permanent position. They stated that my skill set is comparable, but they made an unusual remark, referring to me as ‘dheela.’ After that, I decided to be open about my disability and my struggle to become a motivational speaker and raise disability awareness. During that time, I got admission in TISS for masters in Social work (Disability Studies and Action), which was relevant to my work. I was also involved in sports at the time. I first tried mixed martial arts, but it worsened my Dystonia, so I switched to endurance sports. It aided me in coping with Dystonia. My health and immunity began to improve .My medication was also being reduced. As a result, I began running marathons and became the first Indian with Dystonia to do so.
How was the experience at TISS?
Overall it was good. The professors were amazing and understood my problem. But peers had problems understanding me because of my bluntness which is part of my personality due to ADHD. I utter politically incorrect words to realise later that it was inappropriate. But some of my peers understood that I behave weirdly but being eccentric is part of my personality, which has nothing to do with my intentions. I feel this culture of political correctness does not help in accepting the diversity of behaviours.
How important was family support to you?
The love and support from my family has been incredible. My family is the reason I’m here. It is important to have a strong family in order to succeed in life. It’s important for us (PwDs) to be independent, but we also need to have our families on our side.No matter how strong you become, you will require assistance at some point, whether it is emotional, physical, or otherwise. A heart-to-heart discussion about disability with family members can be helpful. We should not regard seeking assistance as a taboo.
How has your experience with COVID been?
COVID has made things worse for me. It has brought back anxiety and depression. But I’ll get out of it because I’ve done it before. It’s difficult to live with Dystonia and ADHD, but I’m now seeing a mental health specialist.
Please tell us a bit about yourself.
I am Piyush Mishra. I have done my Master’s from NIT, Rourkela. In my second year of my Master’s, I attended a workshop on Autism and assistive technology. Initially, I got interested in the field as Mechanical engineer. I felt that I could contribute to Autism and Technology as my experience as a sibling of a Person with Autism would be helpful in the field. The earlier plan was to pursue PhD in mechanical engineering and straight up go to academia, but in the last month of my Masters, I decided to take a gap of 6 months and figure out what to do after my Master’s. There were many fields such as robotics, Autism, and design, but I realised that these were not the pressing problems I wanted to work upon, although it was related to my previous qualifications. My brother, Punit is an inspiration for all my endeavours.
Tell us something about Punit and his journey.
Punit is 24 years old and is a Person with Intellectual Disability, to be specific, Autism. In the prenatal stage, the umbilical cord was wrapped around his neck, creating complications. There were no significant problems until 10 months. He used to get frequent fevers till 1.5 years. The play school teachers noticed some anomalies, like he couldn’t make eye contact. By the time he was 2 years of age, he couldn’t speak. He was diagnosed with Autism at around three years. From 13-17 years of age, he liked painting and artwork. After that, he lost interest in it. Subsequently, he developed an interest in putting rings in the piston. To our delight, now, he has started cooking. He goes to a special school named Sandhya Sanwardhan Sanstha in Nagpur since the age of sixteen.
Growing up with him, how you came to terms with Autism?
I never had a problem with the acceptability of Intellectual Disability. When I was mere four years old, I understood and accepted that my brother has Autism. I also have an anecdote to share. When I was six years old, my class teacher in school asked me about my brother’s condition. I replied immediately, ‘He has autism’. They were curious to know about Autism. I had to explain it to them. I was surprised that they didn’t know anything about Autism. Sadly, this is the reality even today. You go to any regular school and ask about Intellectual and Developmental Disability, hardly know about it. Coming back to my experiences, I accompanied my brother with my mother to the therapy centre, parks. We used to even fight like brothers. I mean to say that there was no special or exclusive treatment to him, making him feel isolated or neglected. He tells me frankly not to become his another parent and treat him like any other sibling, as the gap is merely two years, so there is no formality between our relationship. We both are foodies.
Share some of the challenges you faced growing up with Puneet.
I will tell you my experiences. In my school, I used to feel anxious, even though at that time, I had no idea what anxiety is, but I used to sweat a lot. There was this feeling that no one would understand my problems. Other reasons would have contributed to my anxiety but my brother being a person with an Intellectual disability occupied a significant chunk of my concern.
When the age gap between siblings is less, as a non-disabled sibling, one has to absorb a lot at a young age. Had I been eight years elder to Puneet, I would have been better positioned to take care of his needs. Another issue that I feel is important to highlight is the social isolation I had to face. Punit is hyperactive, and he didn’t like going to parties because of the sensory overload he used to get by noise and light. I also didn’t feel like going to parties as he was not going, but as a result, I too developed social isolation, which affected me until my undergrad course. It is in my Masters’s only that I opened up. Also, in the school, there is bullying of siblings as well. Comments like ‘Your brother is mad or what?’ were common in my school, and I am sure other siblings also face this regularly. The most crucial period of anybody’s life is childhood, irrespective of having a disability or not. The behavioral patterns we create in childhood are well reflected in adulthood. In college, one of my friends suggested that I marry as soon as possible, hinting at my brother’s disability. I asked, why? They said, “If you don’t get married, then how your family lineage will move forward” Insensitive and misinformed comments like these are passed on as genuine advice. It is the lack of awareness and information.
How was your experience of residential centers for Persons with Intellectual Disability?
I have visited 5-6 residential centers. They have good facilities, but unfortunately, it is not affordable for middle-class families like us. A large chunk of the population cannot afford it. Another shortcoming in residential support facilities that I noticed was that residential support structures are not there. For instance, if an individual chooses to get the support while remaining in their own home itself or needs help at certain times when the caregivers are out for work. Even tried to work upon such residential support facilities locally in Nagpur. I later realized it was a bit premature for me to understand the complexities of setting up such structures. It is a matter of concern for my family, who will be the caretaker of Punit, after our parents.
How did you gravitate towards Doctoral studies in the field of Disability studies?
Gradually, it was prudent for me to move beyond the confines of engineering and find ways of solving the problem. After that, I felt the need to focus on social issues. After getting into the field I realized, it has cultural and political aspects also. While exploring possibilities, I applied to universities, as I got interested in research, my primary area of research being Future Planning for Adults with IDD’s. I got admission to PhD in Disability Studies at the University of Illinois, Chicago I was supposed to join last year, but due to COVID, it got postponed, but now I will be joining this year.
What are the few initiatives which you undertook for the issue of Intellectual and Developmental Disability?
In 2020, the pandemic hit us. From November 2019 to March 2020, I started an initiative called ‘Varta’. We were three people and tried to initiate it as a startup around developing resources for sex education for Persons with Intellectual and Developmental Disabilities. One of the limitations of this project was that we couldn’t connect to experts. Since it was a sensitive topic, we didn’t have the capacity and expertise to develop resources. The idea of Saarthi was there since November 2019, which emerged alongside Varta.
What is the concept and working of Saarthi?
Saarthi, meaning ‘Charioteer,’ is a group of siblings of Persons with Intellectual and Developmental disabilities. Life of Siblings becomes like Sandwich after a certain point. We are expected to take care of our siblings with Intellectual and developmental disabilities alongside aging parents. While fulfilling these responsibilities, we have to look after our well-being as well. So, the fundamental essence of Saarthi is to provide emotional support to siblings and assure them that they are not alone and all their feelings are valid. Firstly, we focused on the visibility of siblings. The life of siblings, the struggles they go through which are often neglected. In a series named ‘Tales of Saarthi’, we started sharing sibling’s experiences.
Until now, people were not aware of the perspective of siblings and their life. This initiative encouraged many siblings to share their experiences who were otherwise hesitant to share their stories. We also organise something called Sips Talk, where one sibling would interview 2-3 siblings about their experiences through simple questions back and forth. Through this process, they get to know that they are not alone, and there others who go through similar experiences. Even parents get to see and understand the anxiety the siblings go through. Some anxieties are deep-seated and stacked up since childhood. At the core, we provide a platform for siblings to open up. Blurt it out is another initiative where siblings talk about their mental health issues. We even talk about the problems and taboos regarding the marriages of siblings of Persons with Intellectual Disability. Especially the female siblings, they are asked to go for genetic counseling to ensure that their progenies are not born with IDD’s which is extremely problematic.
How can we spread awareness about Intellectual and Developmental disability in society?
We keep on repeating the word “awareness,” but I feel awareness cannot come without visibility. We can write thousands of articles about Autism and other intellectual disabilities. Still, this fancy jargon will not be practical if we don’t see them in restaurants, parks, malls, and other public spaces. It will remain in papers. There is a particular view in the disability field, held by a section of Persons with Disabilities. It is not their responsibility to make non-disabled aware of their issues. Still, they should themselves try to understand our issues which I respect and understand, but I don’t know how we convert these words into actions. Creating a separate and safe for PWIDDs is one way to go, but I believe inclusive space that comprises PWDs and non-disabled will ensure recognition and visibility of issues of PWIDDs. These binaries are created due to misconceptions. They have to work cooperatively to build an inclusive future.
Please begin by telling us about yourself and your disability.
I was born with complete visual impairment in one eye and short-sightedness in another eye. But from the year 2000 I lost my vision completely due to retinal detachment. The retina’s central portion is entirely opaque, which resulted in total loss of vision in both eyes.
Did you face any discrimination in school and college?
I went to a regular school and I didn’t face any discrimination but I remember not participating in any sports activities because I had thick glasses on and was always afraid of breaking them. However, my teachers always supported me and I received the same support from my college as well.
Tell us something about your path of rebuilding and progress.
I completely lost my vision soon after I graduated from college and this resulted in the lack of confidence in me. The initial 6 to 7 months were difficult to cope up with. There was self doubt in every step I took and the reaction from people bothered me.
Tell us more about what you did to cope up with the self doubt.
I have really supportive seniors and an encouraging family who helped me to get out of that phase and inspired me to explore. I discovered various mobile softwares and screen reading softwares like JAWS. Staying at home was not an option. I wanted to build a career not just to earn money but also to gain my self-confidence back. I decided to complete my degree and eventually started doing chartered accountancy as a profession.
How can the perception of co-workers in the workspace be changed regarding a person with visual impairment? Tell us from your experience.
Initially my co-workers were not sure about how to interact with a person who has visual impairment. I was told by my colleagues in Reliance that they have not met or worked with a “blind person” before. It is a fact that people with visual impairment are considered invisible especially in my field. In certain professions such as teaching, singing, etc it is easier to accept a blind person but in chartered accountancy, we are a novelty. Therefore, I had to take initial steps to start a conversation. But once they got comfortable, things went smoothly. Initially, they have tons of misconceptions like how can a blind person work, how to interact with someone with a visual impairment , what if we did the wrong thing or said something wrong. It is about putting their doubts to rest and break the ice. Then you have to go and interact with them, get along with them, show them that it was just like dealing with any other colleague. If you keep waiting for someone to invite you, it will happen very rarely. I had to be proactive, and I have followed that same rule throughout my career. Meeting at dinners outside the office hours and informal parties and hangouts are essential. When you are willing to go, they are also comfortable to accommodate and help you.
Tell us an instance where people came for your help and how the visibility of a person with visual impairment in public spaces plays an important role?
My third job was in CST, near Cuffe Parade. I used to take the local train from Mulund to CST.Daily there was this police officer who also used to get into the same train. He used to get down at Dadar as he was posted in Andheri Police station. One day, I went to Andheri to meet my friend and was standing by, below his building, waiting for him to come down so that we could go together to watch a movie. This cop was passing by, and he said, “Did you recognize me? I see you daily taking the train to Mulund, and what are you doing here? Do you want any help?” So, you see, if people know you, they come forward to help. I did not need any help at that moment, but if I needed any assistance, I am sure he would have happily done so, just because he could see me daily on the train. Therefore, visibility plays an important role.
Tell us about your achievements and the initiatives other than your professional career.
The institute of chartered accountants of India, the governing body for all chartered accountants, gave me a special recognition award in January 2020 at their 13th annual day celebrations. Also, the income tax department gave me a certificate of appreciation in July 2020 for work during the past two years to make the e-filing process accessible. Now, they have launched a new website on June 7th, so again they have reached out to me for assistance in looking into the problems, and hopefully, we will be able to make the new website accessible.
I have conducted sessions for Tally for people with visual impairment. They are told not to pursue commerce because they are told if they get into commerce, there is a software called Tally, which does not work with screen reading software, so it is futile to pursue commerce. (for visually impaired) During these sessions, which I took in May 2021, focusing on removing the myth that Tally cannot be used with JAWS. It is accessible to a great extent. Yes, there are problems, but Tally is broadly accessible through JAWS. People have not explored it yet. It may have been inaccessible at one point in time, but not everyone went back to check whether it was accessible or not.
What are some of the challenges that you have faced during the COVID pandemic.
There are a lot of challenges. One of them being lack of social interaction. When you go to office, you meet your colleagues, you have tea and lunch together. Even during work you interact with them which helps the team to bond but this is not possible when you’re working from home. It is more difficult for those who have recently joined the team I didn’t get the opportunity to meet and get to know the team members better.
But the Covid situation has also opened up new learning opportunities. We have learnt to use Apps like Zoom and Teams for meetings. Along with this, many of us had to learn how to work remotely without day-to-day supervision from our seniors. Finally, many of us had to take responsibility for our work and do it on time.
What would be your message to people with visual impairment who want to pursue chartered accountant?
Those who want to come up in this field have to be professionally qualified. They have to keep themselves updated with all the recent changes. One of the facts today is that there are ten or more applicants for every job, and sighted applicants are usually preferred over non-sighted or disabled applicants in the overwhelming majority of the places. So, one has to have something extra to be considered. One has to be self-confident and should be able to do effective networking.
One of the things which they can follow, which I follow myself, is that I always carry my laptop with JAWS in it, so when people ask how as a blind person you work, showing them a small demonstration showing how can I work as a blind person. So, rather than just telling them, showing them helps them to understand. I did it in every interview. Simple things such as opening documents, typing a few sentences, that’s all. It doesn’t have to be a detailed demonstration.
Please begin by telling us about yourself and your disability.
I had a tumour in my spinal cord which was detected immediately after my birth. The tumour was obstructing the blood circulation to the lower limbs, which was hindering the movement of limbs. In order to remove the tumour I had to undergo an operation when I was merely 13 months old. But the operation was not completely successful and the doctors failed to remove the entire tumour. However, after the surgery I was able to crawl, stand and eventually walk with support. The doctors advised me to join swimming classes during my early years as it would help maintain the flexibility of my body. Along with this, the doctor suggested physiotherapy and exercises as well. I joined swimming classes at the age of 4 and have continued ever since.
When I was in 9th grade, the size of the tumour increased due to which my mobility was hampered. The doctors believed that it was not safe to go for another operation at that stage.
Can you share something about your schooldays and your experiences?
Getting into a school was tough because the schools weren’t accessible for me. Along with this, there was a lack of acceptance for people like me as the authorities would consider me as a responsibility and the school didn’t have enough facilities to provide me with personal attention. They were afraid that I would be harassed or bullied by my peers. I finally got into Vidya Niketan, which was near my house. They even shifted my classroom to the ground floor and were extremely supportive. All my peers were helpful and would never exclude me in any way. They always encouraged me to participate in all the school activities. Academically, I was good and I used to get distinction in all the subjects.
Later, I joined NMV Girls High School and Junior College which was about 5-6 kilometres from my home. My father had to drop me at the college while managing his job as a Development Officer at United Insurance. It was getting extremely difficult and so I decided to discontinue my education after 12th grade.
What did you do after dropping out from school?
My brother was a financial advisor and so I started assisting him in the office. The work involved, dealing with mutual funds, shares, insurance, etc. My brother would always emphasise on gaining practical knowledge rather than theoretical knowledge and so I started working on online share trading. Gradually, I realised that I should learn new skills on my own. So now I have started learning digital calligraphy, album designing, graphic designing via Youtube and this is my independent venture. I have launched a website for graphic design that involves designing wedding and birthday cards.
Tell us about your achievements and how your family and friends supported you throughout.
As mentioned earlier, I have been swimming since I was 4. I took swimming classes as a part of my exercise routine but never thought of going for competitive swimming. However, in 2018, an acquaintance of mine suggested that I should enrol for state level swimming championship. We went to Kalyan for the competition where I bagged gold medals in free stroke, freestyle, breaststroke and backstroke.
Talking about the support I receive, I have got complete support from my family, friends, and neighbours. They have always encouraged and celebrated my achievement. My school, Vidya Niketan, invited me as a special guest to hoist the national flag at Republic day celebration. They are proud that I am the alumnus of their school.
What are some of the accessibility challenges that you have faced?
Talking about accessibility, the pool where I go for swimming is not at all accessible. I cannot even take my wheelchair there. Two people have to carry me to the chair in front of the pool and from there I have to crawl my way to the pool. Apart from this, there are no facilities for an accessible toilet either. After my swimming sessions, I have to go back home drenched.
My apartment too is not accessible. The lift in my building is so small that my wheelchair doesn’t fit into it. And so, first, we have to send the wheelchair down, and then I go down alone sitting on the floor of the lift. After reaching the ground floor, there are another four steps of the staircase with which I have to struggle.
Recently, I bought a scooter which is modified to fit in a side-wheel. I am yet to complete the registration and licensing but it is extremely troublesome as there are no proper provisions and system for the paperwork. I have to go to the hospital to get the driving fitness certificate and then have to visit the RTO office multiple times for various other verifications. Visiting government buildings is very difficult as there are no ramps, lifts, or accessible toilets. I have also stopped travelling in trains as it is extremely inaccessible. So I usually prefer to travel by car or plane. I avoid going to places that are inaccessible as much as possible, but in case I have to go, I have to make sure that I do not consume water or wear a diaper so that I don’t have to use the toilet.
What changes would you like to see in order to ensure an accessible infrastructure?
Regarding this, I would like to share my experiences I have had while I was on a trip to Dubai with my family. I was pleased to see the accessibility of the infrastructure. I couldn’t find a single place which was inaccessible. Be it washrooms or the parking slots for Persons with Disabilities. Looking at the level of accessibility and awareness that Dubai has, I felt that I can live here independently. India should also target such infrastructural facilities.
The pool where I go to for my swimming sessions ideally should be accessible but it is not because of the administrative negligence and lack of awareness. They are of the opinion that changes cannot be made for an individual and the building is quite old, therefore retrofitting the built space would be difficult. The same is the case for my Apartment building.
How have COVID and the lockdown impacted your lifestyle and routine?
For people like us, we were in lockdown before the pandemic happened. The only difference is that now other people are experiencing what we experience on a daily basis. On a serious note, it has impacted my routine. I am used to a disciplined lifestyle. My swimming sessions are put to hold. I had started playing basketball just before the COVID outbreak but it too is on hold now.
I was preparing for the national championship for para-swimming but due to the lock down it was cancelled. The Pandemic has affected my daily routine, as there is no motivation to wake up early. People are connecting through social media a lot more these days, which is good but I prefer an active disciplined lifestyle.
Where do you see yourself in 5 years?
I would like to continue with my sports career and represent India at the Paralympics. I have started preparing for it too. But for the process to start this pandemic and lockdown situation has to end. Apart from this, I would like to work on the disability movement and would love to amplify the voices of disability rights in India.
Please provide a brief description of your disability and how you navigate built spaces.
I have polio in my right leg. I use a calliper for short distances, but when I am on field, I use a wheelchair. When I was in college, I started using a scooter with a sidecar for travelling. I have been using a car for 10 years now and I have a Bullet (Bike) with a sidecar which is geared. The previous bikes that I have had were non geared ones. I keep on making modifications as per my requirements. For instances, in the previous scooters that I owned, I used to set up the braking system on the left side. In Bullet, it is not possible as it has a gear system on the left side and therefore I have set up the braking system on the righthand side. These are some of the ways, I deal with my mobility constraints.
What changes do you notice in India’s perceptions and policies towards disability?
In urban areas, the awareness of the general public has increased to some extent. Legally speaking, the law exists on paper but the implementation has not been very successful. In rural areas, awareness on disability rights is yet to reach. The government mechanism is lethargic in implementing guidelines and policies. We have IT cities like Bangalore and Hyderabad. And yet we can’t say that we have any model city which is known for its accessible infrastructure.
Can you share some of the instances where you intervened for your rights and concessions?
Initially, I had to struggle for the railway ticket concessions and the provisions for escort. When there were no separate coaches for Persons with Disability, there used to be Provision for escort in the first and second class of the general compartments but for availing that facility, I had to travel all the way to VT (Victoria Terminus, now Chatrapati Shivaji Maharaj Terminus) from Dombivali. At the VT, the booking staff are usually aware of the railway ticket concessions for PwDs.
Two years ago, I bought a Bullet (Bike), which was fully modified. As per the law it should have been tax exempted, however I was forced to pay the tax amount as the RTO commissioner was unwilling to implement the provisions. Issues like these on the end of the administration are a major roadblock for people like me. Same is the case with the toll tax, there have been numerous instances when I was forced to pay the toll, despite my vehicle being exempted from toll. There were times when I protested and I did not pay the toll but sometimes the circumstances were such where I had to. I have also raised issues regarding parking for Persons with Disabilities in malls, railways, cinema theatres, airports, etc. This arbitrariness of the administration is troubling.
You are a photographer by profession, did your disability come in the way of your efficiency in carrying out the responsibilities of your job?
No, it did not. I am into tabletop photography, product, site and portrait photography. I have seniors who are wheelchair users and have established a good name for themselves. I am no exceptional. However, I cannot directly engage in wedding photography and similar branches. Nevertheless, I give my directional insights to my efficient team members who carry out the major part of the event.
What recommendations would you suggest as someone involved in the fight for disability rights that demands immediate action?
There are a lot of crucial information which every Persons with Disabilities need to know. Right now, the available information related to the rights of PwDs is all over the place. It needs to be collated and accessible through a single portal. I know a lot of people who don’t even know the basic rights, a Person with Disability can avail.
The place which I can think of right now that has accessibility issues is Kalidasa Krida Sankul which is a sports complex in Mulund. There, the swimming pool is not accessible to Persons with Disabilities. Along with this, many government buildings do not have accessible infrastructure. Apart from this, I have experienced several issues which includes grievances in my housing society, issues regarding accessibility in car parking, installing handrails in the building, etc. I have been raising issue to my housing society authorities regarding such basic amenities for 7 years but they have been questioning the legality of such constructions and are not accepting my requests.
Even after all the efforts, my issues still remain unresolved. This is for the first time, I have reached out for legal advice emphasizing that these amenities are mandatory and fall under the ambit of basic rights for Persons with Disabilities which can be legally enforced. It is not an illegal activity. This is the positive approach that is missing at the administrative and societal level. It is the responsibility of the government to publish clear guidelines using all the relevant media on disability rights to create awareness among common public and a strict charter should be created to solve all the grievances related to Persons with Disabilities in a time-bound manner.
What is your message to the Society who have a particular perception of Persons with Disability?
My message to all the people would be that Persons with Disabilities have equal rights and they should not be discriminated based on their disabilities. Any assistance given to the PwDs should be consistent with the spirit of equal rights rather than charity.
This interview is about how a person with Hearing Impairment has navigated the Covid Crisis.
Thomas, tell us how your family and you coped during this pandemic, and how they were supportive of you.
Your immediate family is someone who knows about your disability and coping mechanisms, so when they communicate with us they do adjust, drop their masks, text us if something requires to be communicated etc. My family in this sense was quite supportive.
But when it comes to your extended family, and given the current embargo we all are in, there is a bit of resistance when we reach out to them for help, to go to a Doctor or to some place, after all, we cannot blame them too – everyone is scared for their own life, for their own kith and kin etc. Last year both my parents were Covid positive. My Dad had to be hospitalised, my brother was not sailing, my mom was quarantined in a room, the whole process of getting him admitted to hospitals, taking calls, checking with Doctors, Hospital offices etc fell on my sister-in-law. I felt so helpless, I wanted to help but couldn’t help, how to converse with the security at the hospital, all were just screaming at me with the hope that I will hear it out, but that was a futile exercise. However, I had friends who were willing to do the grocery shopping, buy medicines, arranged cooked meal for us etc. So we sailed through, but internally I was hurt as I was not able do my part, I am a Person with hearing impairment, society doesn’t understand me, totally helpless, quite unfortunate but we sailed through the crisis.
How has COVID impacted your life? What changed?
Prior to the pandemic, life was easy, and I was able to do my own things independently although there were some difficulties here and there due to my hearing loss. However, with the pandemic around, I am mostly dependent on people to get my own things down, I feel I have lost my sense of independence as simple tasks seem to be a herculean one now.
Please share some of the challenges you experienced recently during the Pandemic.
Very recently I had to go to Government Medical College Trivandrum, to get my disability certificate renewed for both myself and for my wife. Right from the OPD Department till the Administration office we were facing challenges to communicate since everyone were completely masked up. However, the staff were a bit accommodating, but it definitely was not a flawless experience. The Doctor was cooperative, he asked us questions by writing it on a piece of paper, however, when it came to the non-medical staff, we had a tough time. At the Superintendent’s office, one of the staff literally screamed his lungs out, what a pity he was wasting his own energy in spite of us telling him that we are a deaf couple. However, we were in need and hence chose to keep cool and get things sorted out. For further follow up visits, one of our relatives accompanied us. As I mentioned we have become dependent on others, but this experience had left a bitter taste in our mouths. It was like we were totally helpless. However, I had a better experience in HDFC Bank near my home, I lost some money on a transaction done via a fake site and was advised by the Cyber Crime cell to take it up with the bank as well. I had to go alone on a weekday, the moment I reached the bank the first thing I did was to disclose my disability, I told them that I cannot hear but I can speak and I rely on lip reading to understand speech. Within a blink of an eye, the concerned staff member dropped her mask, and I was able to execute all the banking transactions without any hindrance, much thankful to have even got my own money back.
What is your message to society as a Person with Disability?
As I always reiterate, we should not wait for some unfortunate situations, for instance, this pandemic to teach us lessons and make changes. Disability Sensitisation and Awareness is the need of the hour. This should start much early in educational institutions so that the right minds are sensitised at a very young age. Sign language should be introduced as a third language in schools. There should be sensitisation and total awareness at all levels in the society. Accessibility and Disability Sensitisation should go hand in hand.
Q. Please tell us a little bit about yourself, your background and how you began your journey.
My basic background is a combination of two fields which is Fine Arts and Psychology. After my graduation in both the fields, I went on to do my Masters in Fine arts and Applied Psychology. Along with this, I have done B. Ed in Special Education and 3 years Diploma in Graphic Designing.
Talking about my inclination towards the disability field, it was almost 23 years ago, when I was taking art classes and working with children. At that time, one of the parents referred a young girl to me. She had difficulty communicating and had behavioural challenges. At that point, I had no idea what her diagnosis was. When I started doing Arts with her, I felt empowered and elated that I was able to use Art as a strong medium to communicate with her as that was the medium she understood. It started from there on. Someone referred me to a kid with autism. Had no idea what autism was. But as I got deeper and deeper, I realised that Neurodiversity was something which excited me. I began with expressive art therapy, using it to teach, but subsequently I went on and educated myself further in special education. Over the years, I had figured out which age group I like to work best with, which was the adult group. I found that both my strength and challenges are with students who do not have extreme levels of difficulty and are almost on the verge of being included into the mainstream work space, but are not able to make it due to lack of appropriate training.
Q. How would you visualise an open workspace, what does it mean to you?
I can tell you what an open workspace eventually should look like. A workspace that is adapted, the mindset changed to be able to accommodate everybody. Years ago, I always equated this with the situation just before when women must have started going to the office, they probably may not have separate toilets in the office, then there comes the first woman and immediately there comes the need of a separate toilet. It is this evolving policy and procedures of workspace to include everyone that are the core principles of an open workspace. It should have a diversity of meaningful work for everybody and it should be safe for everybody.
Q. What are the challenges faced by the organisations and Persons with Intellectual Disability in terms of employability?
There are two kinds of issues which are at play here, one is from the individual’s point of view and another would be from the organisation’s point of view. When individuals are concerned, there are very few organisations which understands the difference between
vocational training and soft skills training. This is my experience. I feel that the actual hard skills of a job, for example entering data, if somebody is a data entry person comprise only 10% of the
things you need to know to function in the organisation.
The other 90% is understanding what it means to go to work, waking up on time, sticking to the deadlines, being punctual, being able to communicate with your superiors, being able to communicate with juniors, being able to communicate with friends, having the emotional vocabulary to share what one is feeling, to understand the difference between workplace and home, to be able to navigate the travel space, to be able to manage yourself, even one is having a meltdown if he/she is able to communicate that, what is work ethics, time management and knowing where do I fit in the worldly affairs. These things are not so difficult to teach but are not being looked upon. Things like arts and crafts are not the skills of the future. Lockdown has woken up a lot of people about the possibilities of the future. It is time for teaching them the skills of the future like sending SMS, organising Zoom meetings etc. Whereas, where the industries are concerned, they are struggling to find neurodiverse employees as they have a very efficient way of approaching a situation. They are relying on organisations, which are sending students who are still of the opinion that it is the responsibility of the industries to take neurodiverse candidates as a part of corporate social responsibility which overlooks the fact that whether they are skilled for the job profile or not. I feel this is not the correct approach. I think this process has to include a training model, which is consistent with business ethics, then only it will sustain. If we keep sending our students solely based on sympathy it will not work in the long run. Until we are not training them properly, we should not be sending them to the industry. We have to look at both the ends. This is where organisations like Evoluer Solutions come into play. We try to find the match between an individual’s skills and suitable industry. We recently finished a successful mentorship programme with Microsoft. We got close to 60 CVs of which we had to select the best of 4. Companies like Microsoft are relying on us to send them the right people and then hand holding interns throughout the programme. There is no scope of favouritism as it would have daunted the credibility of our organisation. Maintaining business ethics is important.
Q. What kind of programmes do you offer and what are the various components of that?
I do employability skills training in depth and detail and all the students who complete the training go for internships. Lockdown has impacted the internships to some extent but till last year, those who completed all the stages of training went for internships. We were working with the hospitality sector, retail, IT, schools and my own office. I have a parallel organisation called ECOS (Evoluer Contemporary Office Services), which is an open co- working where my entire staff are neurodiverse people. All my backend work is done by my interns. This is the business model that works.
Q. According to you, what are the new avenues the lockdown has opened for the disability sector?
First of all, let me make it clear that we focus on employability skills, we do not do vocational training at all. So, before lockdown all our students, roughly 45 of them, were already on the way to become global citizens. They all knew how to operate laptops, they were use to online teaching, they were googling presentations, they had projectors, their notes were on their computers. They were already comfortable with the idea that the computer screens, in front of them are also their teacher. We were already using Information Technology for teaching. So, even before the lockdown was announced, which was on the 25th of March, on 16th of March we went online completely. We have another partner organisation in Mumbai, with whom we were already in touch through zoom meetings before lockdown. The pathways were already created. The kind of staff we had also helped us in making the switch. All the staff in the Evoluer are professionals. They are not just purely therapists/ educators. There are corporate trainers, language therapists and life skill trainers as well. They are Gen Z, gadget savvy, IT accomplished people. Within the first two months of lockdown we went from 45 students to 80 students and we touched 100 at the peak of the lockdown. Now we have students from all over the world and we have teachers across the globe. We paid full salary to everyone, we didn’t ask anyone to leave as there was enough work for everyone. Apart from this, we started Facebook live sessions from 16th of March till the end of July, which started with cooking activity, art activity, or theatre activity which were open and free for all. I honestly believe that those live sessions opened up the doors for many parents who had no idea what kind of activities can be learned through online medium. Many people with extreme challenges started joining the sessions routinely. I remember, in one session the viewership reached 6 thousands . That day, I realised the power of Information technology. It empowered lots of parents and people with neurodiversity.
Q. What are the challenges of mainstream education in imparting education to Persons with Intellectual Disabilities?
When we teach an academic subject, we have to understand the difference between concepts and processes. In mainstream education we focus too much on the processes so much that the concepts lose their significance. If we focus on concepts, we can teach it to everyone. I will give you an example, when we teach the concept of addition, we tell them to put one number on the top and another number below it and to use a plus symbol adjacent to it and as a result a third number will come. This is a process. The concept is that when we add two entities, the third entity as a result of addition will become bigger. The teacher who is able to think through every level of these concepts will be someone who can plan through the progression. We have to be prepared to hire quality staff which is going to be expensive. The content of courses like B.Ed needs to be revamped to include global practices and experiences.
I feel, all the organisations working in the disability sector needs to collaborate and share knowledge. The disability sector in India can only flourish by having the mentality of plenty.