Deaf Advocate with Type 1 Diabetes Makes Himself Heard
Gujarat, May 2021: Nupur Lalvani, who lives with type 1 diabetes, is in conversation with our Blue Circle community member, Brijesh Barot who is deaf & also lives with type 1 diabetes & leads a full, happy life.
Nupur: Thanks for agreeing to do this with us, tell us a little about yourself, Brijesh
Brijesh: I am Brijesh Barot and I am from Gujarat, India. I did my learning
from kindergarten to 10th standard at the Deaf School in Gandhinagar, Gujarat and I went to another Deaf School for 11th and 12th class in Vadodara, Gujarat. In
2014, I happily received my degree of BA in Applied Sign Language Studies -
BAASLS run by University of Central Lancashire, Preston, United Kingdom
(UCLan) and Indira Gandhi National Open University (IGNOU), New Delhi, a 4 year course. I changed my life for the better after my BA in Applied Sign Language Studies; since in childhood, I was not even aware of sign linguistics and Deaf Identify. I completed my M.A in Education this year, in 2021.
Nupur: When & how did you get diagnosed with T1? When did you develop hearing impairment, are you fully or partially deaf?
Brijesh: In 2013, I was diagnosed with type 1 diabetes at the age of 23. I did not know the meaning of type 1 diabetes before it happened to me. One afternoon, after an hour long nap, I got up from the bed & felt dizzy. I visited the doctor's clinic, they asked for a blood test and confirmed my diagnosis with a high blood glucose of 358 mg/ml.
I visited another doctor too, for a second opinion - I was shocked and I could not believe I was diagnosed with something called type 1 diabetes. I had to quickly get used to my new life, took the advice of the doctor and started to use an insulin pen and a self-monitoring chart and my glucometer (SMBG). The Head Doctor asked “Does diabetes run in your family?" I was actually the first person in my family to have type 1 diabetes.
I am fully deaf by birth and I live an absolutely normal life by travelling, working, playing with friends, and communicating or writing.
I can do anything except hear and I am fully independent
I have travelled to Kerala, Odisha, New Delhi, Indore, etc for work including as a Peer Tutor, Researcher Assistant, Senior Trainer and Sign Language Instructor. I am also talented in cricket batting and I'm a spin bowler.
In Deaf culture, being deaf is not a barrier at all. Hearing folks sometimes think that hearing impaired people’s being deaf is a 'problem' but obviously it's not. In fact, little do they realise that if 2 hearing people who speak different languages (let's say one Indian, the other French) want to communicate, they definitely face a language barrier - one that 2 deaf people from different parts of the world might not!
Deaf people use sign language in the world the same way as hearing people use spoken language. Our Deaf community always remembers the words of I. King Jordan, President of Gallaudet University, “Deaf people can do anything except hear”
Nupur: What's it like, living with 2 medical challenges & if I may ask, which one is more difficult to manage?
Brijesh: Not difficult per se, but diabetes has its fair share of challenges for sure. During college in 2013, I used to walk, jog and play cricket with my classmates and roommates and was relatively relaxed. In 2016, I worked as a peer tutor in Kerala. It was difficult because I was working in a new place & juggling a lot of things. I lead a busy life and must take my insulin on the go sometimes - hard to do so in a moving vehicle like a train, flight, or bus!
Nupur: What equipment or technologies do you use for T1 & being deaf?
Brijesh: I use glucometers, ones from Alere G1 and BeatO and I also use a self-monitoring chart & my insulin pens (I use Humalog Lispro & glargine) by following the advice of the diabetes doctor. There are always technologies available to help - I had taken the services of a sign language interpreter for my appointment online with my diabetes consultant during the Covid19 pandemic.
Nupur: Tell us more about your family
Brijesh: I'm grateful a million times over to my family. My parents have supported me with everything despite financial difficulties. I completed my BA in Applied
Sign Language and Studies and at the time it was definitely difficult managing the small finances for medicines, food, and a rented house in Delhi since I was in another city, away from family but we managed.
Nupur: Tell us the story of how you met your wife
Brijesh: We were classmates back in 2011, when I enrolled for my degree of BA in Applied Sign Language Studies - BAASLS run by University of Central Lancashire, Preston, United Kingdom (UCLan) and Indira Gandhi National Open University (IGNOU), New Delhi. I was asking our teacher some questions in the classroom (through sign language of course) and she was paying keen attention because she wanted to know the answers too. Gradually we got talking, she started asking me questions about the coursework & once out of the blue she said “Do I have a friend in you?" and I said "of course!”
We started talking a lot, we would ask each other a lot of questions and discuss everything under the sun. We began dating in December 2012 and dated for 5 years. It's not been easy, we had to stay apart for sometime thanks to working in different cities & getting our careers on track. Eventually, we got married in 2016 in Gujarat. She has also done her BA in Applied Sign Language Studies - BAASLS and Special B.Ed. (Hearing impaired).
Nupur: Can you tell us about the social and other difficulties and challenges you have had to overcome as an individual as well as a part of various social groups and communities?
Brijesh: After I was diagnosed with type 1 diabetes, I told one of my classmates about it, hopeful to hear words of support from another deaf friend. Unfortunately for me that didn't happen - the news of my diagnosis spread like wildfire and a few of my classmates started talking negatively about my relationship with my girlfriend and our future marriage failing because I now had diabetes. I felt devastated.
I visited the hospital to ask the doctor if my diabetes will be an impediment in living a happy married life. My doctor patiently counselled me and told me not to bother with any negative thoughts or reactions and that I could have a perfectly normal life. That instilled some hope and I started to be confident and tuned out the negativity. My wife has been my rock in this journey.
As per the 2011 Indian Census there are 1.3 million people with hearing impairment but on the other hand India's National Association of the Deaf estimates 18 million deaf people in India. Community is very important - hearing people often do not know what deaf people need in terms of education (In Deaf education, many deaf people use oral language forced by hearing teacher instead of sign language universally chosen by deaf children and adults), health, inclusion or accessibility. If accessible sign language isn't available to the deaf community, we miss important events and updates.
Blue Circle Diabetes Foundation is doing good work in diabetes and community building but I would love it if sign language accessibility was available for things like workshops so that deaf people are able and comfortable to listen to important information on health.
Nupur: Wonderful to hear about your family and wife. Thanks for your support & suggestion, we will definitely try & work something out. Brijesh, what is your motivation to keep going? Would you like to share a message for our readers?
Brijesh: Right after I was diagnosed with T1, I often asked my doctor, parents,
and relatives, “when will I be cured?” Gradually, I understood & came to terms with the fact that there is no cure for type 1 diabetes. Having diabetes doesn't stress me now, in fact I enjoy reading & updating my knowledge on diabetes.
Laugh, be happy, maintain sugar levels & have faith in God
I am now more motivated to stay fit always, by running, walking, playing cricket, badminton, traveling, and cycling to boost my energy & maintain sugar levels. I miss the good old days of playing cricket & travelling with friends thanks to the pandemic and everyones busy lives and work. I still walk and cycle to remain fighting fit. I enjoy travelling to peaceful places to make my health better and body and mind happy.
My diabetes mantras are avoiding desserts or sweets, checking and controlling my blood sugar levels often and exercising regularly