Sunday, January 27, 2019


Indian Osteogenesis Imperfecta Foundation (IOIF) had an opportunity to interview Sirisha, a person with Osteogenesis Imperfecta. In an hour-long conversation with Sirisha, we got to know about her life and its finer details and how despite all odds she continues to work independently in Bangalore away from her parents and homely care. This post attempts to capture the eventful life of Sirisha and intends to spread the message to families and people alike that the greatest truth of life is our inner strength in front of which every seeming incapacity crumbles and surrenders.

Sirisha was born in Chittoor town district in Andhra Pradesh in the year 1988. The medical staff was not aware of OI and handled her as they would handle any infant born without OI. During birth she experienced multiple fractures in several parts of her body. However, a recognition of underlying cause could not be made and Sirisha was continuously writhing in pain. Observing these incidents, the doctor advised to take the baby to an orthopaedic doctor. Within 30 minutes, as the orthopedic doctor checked her, Sirisha was diagnosed with Osteogenesis Imperfecta. With the hope to find a cure for their daughter, Sirisha’s parents took her to several hospitals like NIMS Hyderabad, Vijayawada orthopaedic center and AIIMS. The diagnosis, however remained the same and was confirmed by all the doctors. By this time the family had understood that there was no cure for the condition.

Growing up she was home-schooled till 7th class mostly by her mother. It was in her 7th class that she went to school for the first time to write exams. She eventually succeeded in writing her 10th class exams but after that there were some challenges in getting admission to pre-university. After concerted efforts from her family and with the support from school management she was able to get permission to appear in exams and continued to be homeschooled. She had opted for Commerce stream. She enrolled in BCom(computers) and successfully finished it. Post graduation she enrolled for an MBA and simultaneously she was also preparing for some competitive exams. Eventually, she joined a private firm as a data entry operator and handled multiple responsibilities including that of customer care executive, quality analyst person and also a mentor to people with special abilities at the workplace. She worked there for 3.5 years and currently she is working in a foreign bank.

Sirisha with her parents.
The biggest decision Sirisha took was to move out of her hometown and come to Bangalore. Her father was a big force behind this decision. She clearly remembers what he had said, “Now that you are a grown up adult, you need to learn to take care of yourself”. It would not have been easy for him to say that to Sirisha, he knew the challenges involved, yet he encouraged his daughter to explore and experiment with life in her own personal ways. Additionally, the motivation behind this decision she says was also to prove herself and to provide a peaceful response to those people who had objected to her education while growing up. Sirisha mentions that she had to hear statements like – “What is the point of writing exams? She has to be carried all the way to the school. What is the use of education to her?” and much more. Who would have thought that this girl would be using all these doubts to cultivate inner strength and moulding a dream? With exemplary demonstration of positive rebel attitude Sirisha has managed to turn those anxious about her life and future into her admirers.  Obviously it was not as easy it sounds on reading; growing up and embracing her condition involved momentous efforts and an attitude change. Imagine a girl with OI coming to Bangalore on her own and setting up a comfortable dwelling. She currently lives in a paying guest accomodation with the help of a caretaker.

Sirisha also mentioned about her colleagues in office, especially the MD, who have been very cooperative and supportive. She also learnt Kannada to mingle with the employees and the Bangalore community.  We asked Sirisha what her message is to the parents of kids with OI after experiencing the way her parents brought her up. She says,
“Why do you think the child has a critical condition? The child needs little bit extra care and the responsibility ought to be to nurture the child such that he/she can live independently at any cost. In that respect, education of child plays an important role. See that you are making your child fiercely independent”.
Sirisha is also a National Awardee in the Best Employment category.

Sirisha receiving the National Award.
IOIF thanks Sirisha for sharing her valuable time with us and letting us know about her life. Sirisha’s life is a testimony to the fact that OI does not have to stop anyone from becoming a useful asset to the society and lead a life of financial independence and social dignity. IOIF is also immensely proud of Sirisha’s parents.

(This article was written by me for Indian Osteogenesis Imperfecta Foundation).

Saturday, January 12, 2019

My trip to Swasthya Swaraj : Computer Lessons

This is a post in continuation of my attempt to share lessons from my visit to Swasthya Swaraj Society. Swasthya Swaraj is a secular, not-for-profit, organization working towards making health a reality for the poorest and unreached. Swasthya Swaraj has set up a model community health programme – Swasthya Swaraj Comprehensive Community Health Programme in the tribal-dominated Thuamul Rampur Block of Kalahandi district in Odisha, India.

During my stay at SS, I also took lessons in Computer skills development, mainly Microsoft Word and Powerpoint. The total number of students were 6, so I divided them in two groups of 3 each and focused on practical training. I tried to teach them how to create documents in MS Word with practical knowledge of headings, font, table creation etc and in MS Powerpoint my focus was to help them understand its utility and how it can used as a tool to disseminate information or present some reports/findings. These sessions were of longer duration and mostly took half of the day. The students had a playful and experimenting attitude. As I was observing the students, I went back to memory lane to my college days when I had felt the touch pad for the first time on laptop (2009) and was struggling with it. I remembered how I had learnt it - observing an M.Tech student using it. Getting comfortable with mouse and touchpad takes some time and the students were experiencing it. They exhibited quick learning curve in computer and whenever I’d ask them before a class, “Computer or Maths” they used to declare “Computers”. My decision would often be based on what they needed more practice in and mathematics always had an upper edge.

Students of Diploma in Community Health Practices learning in Computer Training Class. 
My decision to focus on technology and mathematics in an applicative and practical way was based on my own experience of their tremendous utility in day-to-day life. I usually read a lot on women in STEM and the opportunity at Kaniguma presented a good platform to seed that in the minds of students. As most of things these days are based on technology and computers, I felt that it was important to show them how computers make our lives easier in work-related ways. In the brief time that I had I tried to tell the most important things, tremendously helped by Mr. Sudhakar Reddy. I taught them MS word by giving them writing assignments with features that involved experimenting with multiple options in MS Word. These assignments were done in class as I helped them when they got stuck. Thus, it was sort of, a training like that on a sports ground. I also helped them understand the use of tables and how they can be inserted in a document. Later on, all of us learned MS Powerpoint by creating a presentation titled, “Father of Nation - Mahatma Gandhi”. Through this activity, I intended to make them understand the concept behind Powerpoint and its utility. I also emphasized on the difference between ClipArt images and images saved on computer. BSNL is still not available at Kaniguma village, hence internet is not available except for that on mobile devices.

I was satisfied by myself with the computer classes more than those of mathematics classes, yet that is not a delight to me particularly. To my unaware-city eyes, most things looked normal but I know that beneath the appearance of peace and silence, lie truths of tribal health challenges and acute lack of quality education. These very few personal observations have bombarded me with questions and I see myself tongue-tied. Something appears to be changing in me. The city noise does not knock on my ear drums now; I choose to retire with myself and my thoughts in my room and all that runs on my mind is Kaniguma, those 12 days at Swasthya Swaraj and so much more learning that I can never imagine.

Long Live Swasthya Swaraj.

My trip to Swasthya Swaraj : Teaching Lessons

My trip to Swasthya Swaraj (SS) was a balanced mix of multiple experiences. I got the opportunity to interact with young students of Diploma in Community Health Practices (DCHP) at Kaniguma village, the staff at Health center set up by SS and also spent good amount of time working in the office of SS at Bhawanipatna, Orissa. All of these experiences are close to my heart and have added value to my being. In this post I would describe my experience of interacting with the girls. In these sessions I focused on revising basic arithmetic concepts, mathematics for community health, developing computer skills through hands-on training and English book reading. I spent close to three sessions on three different days with the girls. Although my experience is very limited yet it has given me some food for thought which I try to share here.

In the first session I decided that it would be a good idea to have a detailed discussion on BMI (Body-Mass Index) with the students. Naturally, the discussion began with malnutrition and how it is assessed. I helped them understand how BMI helps to classify whether someone is severely malnourished or of normal weight. The theoretical knowledge of girls was adequate and they responded well to my conceptual and situation-based questions. Obviously, they were hesitant because I was a new face to them but I ensured that it did not smother the discussion. During the class then, I asked them about the mathematical formula for BMI. This took time and eventually we all arrived on a consensus over the universally-accepted formula for BMI. Later on, I asked them compute their own BMIs and classify self into the three categories of BMI we had discussed, namely, Normal, Overweight and Obese. This exercise would open doors to big and significant revelations to me and would then direct all my efforts into something more fundamental than BMI : addition, subtraction, multiplication and division. Computing BMI involved handling decimal numbers and division and multiplication; the students struggled with it and I clearly was not happy. My assuming mind was expecting that high school graduate students would be adept in these basic operations but I realized that we needed to work hard on these. This realization, I’ll be honest, was not quick, it was preceded by anger and a psychological shock. I had read in multiple reports worldwide and also national that students find it hard to read and perform basic mathematical operations. Somewhy I had not really paid attention to the veracity of those findings and never cared to think over what it meant and my first session made me sink within. “How could high school graduates not know division and multiplication?”, I asked myself recurrently. I did not arrive at a satisfactory answer. Postponing the question to my night-time rumination, I composed myself , wiped the white-board and decided that it was more pertinent to discuss and make them practice sums involving basic arithmetic. The anger and psychological shock was morphed into a self-discovery; I was not so much angry on them but on myself for I found it challenging to teach them those concepts. This was another revelation and it pinched me harder than the first one. It was a brush with my own incompetence and I knew I needed to work on it and do my homework. Much thanks to one of the students who eased my job and as she explained certain exercise questions to her classmates. This was my brush with language barrier, although they understood Hindi but obviously they understood Oriya better, the local language. Multiplication was still manageable, what I found tough to teach was decimal division and simplification of decimal fractions. Their confusions were valid, the students were trying hard and responding really well but I was not satisfied with myself. I was not able to teach them that with my existing abilities. I have taught students, mostly in college and yet  I was struggling with basic concepts, things we term as “no-brainer”. That day really hit me hard; at night I called up my friend Manali and shared my feelings. She told me that may be they were never taught while growing up and I naturally asked, how could that be possible. I could not believe that they were never really taught this in their primary school and this thought still haunts me. At one end of spectrum are people like me who aspire to study from the promising institutes of the world and at another end of the spectrum are students who have not been instructed satisfactorily in their primary schools. This is the first time in my life I sensed a real divide and a wide one at that. It seemed like violence to me. For a long time I had been hearing the unwillingness of doctors to serve in the poor and heard-to-reach areas and here I experienced the same for education, primary education. And then it was an attack hurled on myself from self. In that respect, I am still torn and lie in deep ambivalence.

In those moments I also realized how fortunate I have been to receive a good education; it has allowed me to dream higher and aspire for greater things. I wonder what dreams of so many tribal students would be like. Notwithstanding all that I was feeling, I decided to work on my teaching skills and referred some material so that I could teach them properly the intricacies of basic arithmetic operations involving whole numbers and decimals. I had to work extra-hard with two of the students and what followed that was nothing short of a discovery to me. The two girls were able to understand what initially seemed challenging to them; with my naked eyes I saw that concerted effort from teacher’s side and focused practice does pay some fruits. “No student is incompetent”, it was written all over the walls of my brain. I was delighted to see that they did obtain some idea but I do sulk now for my visit was limited and they need more practice and a close interaction with a facilitator. I tried to teach them but I am aware that it was like providing a spoonful of elixir to them from the vast ocean of knowledge.

In the kind of world I live in, I am made to believe that everything is perfect, people are well-read, well-clothed and well-fed and that the problems that we have now are the problems of materialism, substance abuse and other crimes. However, it is a tragedy that there is so much that I do not know. So much which is actually important to know that I do not know of. It is after experiences like these that I can understand books written on social issues and health better. Furthermore, it was precisely due to this experience that I went back to the day when Mahatma Gandhi was thrown out of the train in South Africa and read it all over again and what transpired after.

Long Live Swasthya Swaraj.

My trip to Swasthya Swaraj : New Year Eve Celebrations

On my first day at Swasthya Swaraj, I got up at 5:30 am and went for a morning walk. Whenever I am on travel, my first priority is to find out a place to exercise and as God would have it, I not only found a huge stadium 5 minutes walk from where I was staying but also a “desi-gym” it housed. The dumbbells and weights were of rusted iron and big stones, the machines I had never seen before but elegant and uber-unique in their own ways. Exactly, my kind of place. I was very happy to find this gym and the stadium - LAL BAHADUR SHASTRI STADIUM, BHAWANIPATNA, KALAHANDI.

Later on at 9am I met Sister Aquinas. She gave me one of the warmest, most loving hugs I have ever come across- she snuggled me close to her with a loving force. That was when I realized what it really means to hug someone and have been practicing since. The team of Swasthya Swaraj and I started off for Kaniguma at around 10am and reached there at 12 in the afternoon. The scenic beauty outside was breathtaking, forest everywhere and small streams sidelined with boulders reminded of all the times I have planned treks just to experience them. And here they were lying in their plain innocence, raw and wild beauty but with grace still intact. At Kaniguma I met the staff and students associated with Swasthya Swaraj. Swasthya Swaraj has started a diploma course in community health for tribal girls so these were the 6 students I met in addition to its huge staff of swasthya sathis, field animators, ANMs, lab-technicians etc. Since it was a day of the celebration feast was also getting cooked in the open. I could spot water flowing just 200m from the place and went there with my friend. And what a pleasure that was. I threw my shoes and socks away and went in water: running, cold, clean water. I even drank from that spring and spent some 15 minutes there. This place is still etched in my memory.

Later on games began. We played lots of games : like jumping and trying to reach out for the candies tied above on a rope while both our hands tied backwards, blindfolding games, musical chairs, passing the parcel, tug-of-war and the tribal girls also performed dance. I got to see the tribal dance closely, even though what I saw was limited but that rhythm, symphony and pattern in which the girls danced in a round circle felt nothing short of some mathematical function contracting and expanding with immense grace and perfect periodicity.
A game in which the person is blind-folded and is supposed to hit the vessel with the stick. 
After the games, we had food - I mostly ate rice and little dalma. After the lunch, prize distribution ceremony was held and then again some games including the dance performances. It was a colorful, vibrant and energetic event interspersed with so much happiness in all the surrounding hearts and also allowed me opportunity to carve new friendships.

During the onward journey and often time-to-time Sister Aquinas would tell me about philosophy of tribals and their way of living in a community. I got to know that for Tribal people, "jal-jameen-jungle” (water-land-forest) are the things they worship for they believe that that is what sustains them. Their philosophy is to take that which is needed and not to exploit the nature. I wondered when was the last time I thought about being responsible towards nature to this extent- virtually never. Of course, there are challenges - network connectivity, access to academic resources is severely limited. But the village has a health center now where staff is well-equipped and trained to handle any sort of emergency of health case and save the villagers anxiety and prevent them from lethal consequences. Sister Aquinas who is a doctor herself carries out OPD regularly in the 76 programme villages that Swasthya Swaraj has adopted. People who come to clinics are given money for attending clinics and also provided grains. TB, malaria and severe-acute-malnutrition are major health concerns and level of education makes me feel fortunate and disappointed at the same time. Certainly, we have got so much in our life so easily that we almost live in a closeted world of luxuries and comforts and when we move out to area outside of our cocoons we wonder, “Is this for real? Does this really exist? How is this possible?”. You realize that truth is stranger than fiction and harder to believe.

Suveschcha, Me and Sangeeta (Left to Right)
When I come to places like these I often think about my father and mother. It would have taken such huge struggle and immense hard work for them to get out of village, envision a dream and then work towards that dream despite financial hardships and prolonged periods of despair. Clearly, I do not know what gem they are and clearly I am not mindful of all I have received.

Day 1, as much fun-filled it was, it was also revelatory in many ways, mostly due to the short real life stories Sister Aquinas would narrate from her experience of working in the area. My first day of the trip was eventful, I met many new people, made some friends, played many games, laughed a lot more, got huge time to spend in raw nature and that was the way we all welcomed the new beginnings.

This would not have been possible without support from Swasthya Swaraj Sansthan, hence I thank Sister Aquinas and her team for allowing me to visit SSS.
Watch below 5 minute video capturing the Day 1 at Swasthya Swaraj.

Long Live Swasthya Swaraj.

My trip to Swasthya Swaraj : The Journey

It had been couple of months since my last field trip to MASUM (Mahila Sarvangeen Utkarsh Mandal) in April and I thought I needed another. My mentor at SOCHARA(Society for Community Health, Action, Research and Awareness), Dr. Thelma Narayan suggested Swasthya Swaraj. In 2 days I tried to read everything about the organization and also sent an email to the team expressing my interest for an exposure visit. The mail was warmly replied by Sister Aquinas Edassery. To my delight we met at the 14th World Bioethics Conference in December 2018 after our correspondence and the visit was fixed for the first week of January 2019. What more could I ask for? I was excited, eager and grateful for the opportunity that was to come. In the series of posts I will share my experience at Swasthya Swaraj in Kalahandi, Odisha.

My trip started on 29th December early morning at 5:30am. I took up a flight at 9am in the morning from Bangalore to Visakhapatnam and reached there at 10:45am. My train from Visakhapatnam to Kesinga (the nearest station to my destination) was at 3pm in the mid-afternoon-early-evening. Figuring out how to leave the Vizag airport took some time for the cab drivers were not open to a share ride till the railway station. Twenty minutes after understanding the state of things, I took an auto and proceeded towards the railway station. I had lunch at a hotel near the railway station, Kalindi Restaurant. It was 1pm by the time I finished my lunch and headed towards the railway station which was actually a 5 minutes walk, prolonged to 10 minutes because of my voluntary sauntering. At station I was hooked on to the bookshop and explored multiple books, bought some and read them till my train arrived at right time at the station. I had booked my ticket for the sleeper class, it had been a long time since I not only travelled in train but also in SL. I particularly am fond of travelling in SL because of the vibrant experience it offers and also a sneak peak into the life of people in a sort of mini-India in train. Needless to say I was not disappointed, my eyes and brain did observe some events which led me to feel how aloof I had come from the reality while living in the closed quarters of ACs, 24x7 electricity, clean washrooms and less people. The coach in which I was travelling was over-occupied than its capacity and on my seat (side lower) , 3 people were sitting - 2 of us were women, hence the seat was less crowded. Many fellow travellers were standing, but carefully looking in all directions to just get a small share on the seat to sit and relax. Fights and some arguments did take place over luggage adjustment and clean passage area. In that I saw a glimpse of rich insulting the poor (travelling without full ticket). I wondered whether offering these people a seat would be kindness or implicit encouragement to them for not buying a full-ticket. I wondered if they lacked money. But I am still torn on that question. People were sitting in the exit area of the train coach, covering themselves with thick shawls because of the winter and indulged in casual conversations while munching on roasted peanuts. Food stuff sellers made the coach look like a mini-fair and the pandemonium never seemed to stop and I didn’t mind it. It was something that I wanted to observe. The train was running on time - Dhanbad/Bokaro Express. I had my dinner on train which I had got packed - chapattis, 2 bananas and one apple. I could not sleep during the 6 hours journey, mostly because I didn’t get the space and secondly also because I was not that inclined to sleep. Around 9:40pm I got down at Kesinga after series of to-and-fro movements between the two exit doors not understanding which way the platform would come. I was anxious all the time because I thought that I might not be able to alight at the platform because of the human-traffic at the coach exit doors. The men did help, I had requested them to keep looking outside in the dark to get any inkling of the side where the train would stop. The train stops for a very brief time at Kesinga but I was able to comfortably alight despite the congestion at the exit doors.

Swasthya Swaraj had sent Mr. Surendra to pick me up and the place of accomodation was further 35km away from the railway station. It was cold in the night, very cold in fact, as compared to Bangalore. I reached the place around 11pm and immediately went to sleep. Next day, we were all supposed to celebrate the onset of new year 2019 with the tribal people at Kaniguma village. I could never have imagined what a delight it would be to be with all of the lovely, warm and simple people and welcome the New Year.

Long Live Swasthya Swaraj.

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