From Ahmedabad, India, 25 year old Jazz Sethi has ‘danced with type 1 diabetes’ since the start of 2009. In this Diaview, Jazz shares about her life passion as a dancer and how she has choreographed it into her life with this condition – taking extra steps in recent years to reach out to others through her start-up called D1abesties.
1. You are someone who clearly has one distinctive passion which is in dance! Firstly, can you share with us an insight into that: the types of dance you do, when you first started dancing – what you enjoy the most about it!
2. After you were diagnosed with type 1 diabetes, did you have any fears or concerns regarding you love for dance and this condition? What was your initial reaction to diagnosis?
3. How did your family respond to your diagnosis, it must have been as big (or bigger) a shock for them as it was for you? And as for your dancing life, what were your families initial responses to it and have you seen them grow with you in this journey?
“My father is a professional athlete, and the first thing he told me when I was diagnosed was – “Wasim Akram has Type 1 Diabetes too, and he is a world class athlete”. Somewhere that provided a lot of instant comfort. It was definitely a shock for all of us, but we also grew together. My family and friends have been incredibly supportive, not only of my dancing but dancing with diabetes. There was hesitation in the beginning, but I think as I grew older and more comfortable and confident with my diabetes, everything fell into place. Extremely grateful for their support.”
4. Regarding diabetes care in India, is it fair to say it is a beautiful country but with such a large population, there are some great extremes: on one hand there is the glitz and glamour, the millionaires of the Bollywood world for instance, on the other there is a vast levels of poverty across all populated cities and rural areas. What would you say are some of the biggest challenges that exist for medical, and particularly diabetes, care across the provinces of India?
5. There is a large misconception into the mindsets of many families in lower income settings, out of love and concern for their loved ones, of taking less insulin and even replacing it with herbal remedies. Have you ever encountered these views, and what steps are being implemented to better support education for families with diabetes?
“I have always said – that its not enough just to give a family insulin, unless you educate them about it. I have personally interacted with so many families who have stigma and taboo about the idea of insulin… In my opinion, this happens because ‘insulin’ not only in India, but across the world is deemed as a punishment. Since type 2 is the higher percentage, I have often found HCP’s telling people with type 2 diabetes that if you don’t take care, we will have to put you on insulin. This reputation then sticks on and insulin is seen as the enemy. I have found families trying every alternative approach – from yoga, to prayers, to Ayurveda to chants.. The biggest thing we have to do and are trying to do, is normalise insulin. Our biggest ally is awareness – and that’s the mission – to make people aware that for T1D insulin is equivalent to oxygen.”
6. Diabesties has been growing both with its social media presence and more essentially so, with its action for communities. We have seen a few local organisations in recent years start to grow more and more across India, is this a new wave of patient empowerment in diabetes care occurring? And can you share about some of the work of Diabesties?
7. Back to your story and dance… you described recently your journey with type 1 diabetes been like a ‘choreography’ which is a wonderful concept. Can you explain to us a little bit about your dance life connecting with your daily life with diabetes, and how the two align together for you?
When I choreography, I think about a lot of elements – the lights, the stage, the space, the movement, the time, the music, the performers, the props, the backdrop, the sync, the expressions, the audience and the intention. Thats what T1D is like – its thinking about a lot of things, but doing it with grace. Its the 2 am rehearsals, the perfecting of a spin, the complicated floor work, the high of a leap, the picture perfect pose, the reworking of a step and so on. Choreography for me, has always been a never ending process and journey. Its never ‘finished’. It ends in performances, but the story and the message lives on forever.
8. Finally, what is your personal message to share to others around the world living with this condition?