Being HIV positive and living a full life isn’t a crime. People get curious. She laughs graciously. Let’s hear it from Jyoti Dhawale.
Jyoti, Tell us in details about your journey from the beginning. Since when and why you thought of becoming an HIV Activist.
I am the daughter of an Air Force officer, and come from a broken family. I suffered from bilateral sensorineural hearing loss, since I was three. It’s hard for me to follow any conversations without reading others lips. I find the problem in pronouncing certain letters, and even following them.
Despite all these, I never felt any hatred towards my dad.
All the dreams were shattered because of my disability.
I fell in love and married. When the whole world abuses you, a little kindness and love make everything perfect. It was so until I became pregnant. My happiness was shattered when my husband asked me to go for an abortion. Before I knew it, I became a victim of marital rape. I went through this thrice and ended up being HIV positive.
I couldn’t fight my abortions because I was broken financially and emotionally. The Domestic Violence Act was unknown to me. When I had the report in my hand, which was said “you’re HIV positive”, I was three months pregnant, it was 2006.
I had been transfused with infected blood while undergoing one of my three abortions from three different hospitals.
The fourth and final pregnancy resulted in a healthy baby boy, thankfully born HIV negative. My ex-husband was forcing me to abort this child, but I came to know about his extramarital affair. He demanded a divorce soon after the birth, and took his son with him. I am now fighting an uphill legal battle to secure visitation rights with my son.
I needed financial security so I began searching for a job. I met Vivek Surve, my current husband in an online chatroom. In June 2011, my father passed away and my stepmother did not allow me to go near him. My emotional downfall led the foundation of our closeness. The love I deserved, I received from Vivek. Hence, the beginning of my dream to make the world a better place for people living with HIV/AIDS – against stigma and discrimination.
Prior to working at The Well Project, Jyoti was the creative manager and social media and public relations head for Black Swan Entertainment. Today she’s an activist fighting for the rights of HIV and AIDS patients. She is also the ambassador of the Pakistan-based Beydaar, Indian ambassador of The Stigma Project. Plus she is a part of International Steering Committee Member at Prevention Access Campaign. But most importantly, Jyoti dons the hat of a blogger for A Girl Like Me (sister concern of The Well Project, USA).
Tell us all the challenges you have faced throughout the journey and how did you manage to overcome it?
The feeling of worthlessness is what forced me to emerge stronger.My marriage was on the verge of divorce, my son being taken away, I was homeless and my fear of how I am going to survive without medication as my job didn’t pay me well enough to afford them.
Through Divine Intervention, I acquired a job that paid me a salary in 5 digits!!
Then came being a person with HIV. The stigma!! No dentists would treat me. I lost many of my close friends whom I shared my secret of being HIV positive. That was the critical point when I decided to learn about HIV.
The turning point came when I fell in love and married a man who is not HIV positive. Being a mixed status couple or serodiscordant couple had raised a few eyebrows in how we live as husband and wife. People’s curiosity made us come forward as an example to shatter all the myth that surrounds HIV.
How has the journey been so far?
“PURPOSE is the reason we journey. PASSION is the fire that lights the way!!”
Hence, it has been an overall LEARNING experience. Learning to be in other’s shoe and “feel” what they feel. UNDERSTANDING the background and society that they come from and think from their perspective instead of advising and judging. GROWING spiritually as the life unfolds moulding and shaping one’s thinking of what actually “life” is meant to be and how to achieve tranquillity.
What motivates you to play all these roles in one life Writer/Blogger/HIV Activist/Motivational Speaker/ Global Ambassador?
To make the world a better place for people living with HIV. It is not just HIV that is stigmatised – there are many other illnesses too, that are linked to stigma. HIV is just another thing in a world full of suffering.
What makes you passionate about what you do?
The tragedy of life is NOT DEATH but what we let die inside of us WHILE WE LIVE! That no one should die (emotionally and mentally) because of HIV – they deserve to live!! Thus, I battle with this virus, until There Is a CURE!!!!!!
Share your insights about the new age NGOs or other organisations…
I trust the two websites that give the accurate and deep information on HIV/AIDS and STD. These websites are well-connected to people and are reachable where one can ask questions, even blog, seek the help of support groups, etc. The Well Project even conducts webinars which help educate people all over the world.
What are your biggest ambitions as an HIV Activist?
I just let myself go with the flow and take things as they come. With the HIV/AIDS Bill passed recently in Indian Parliament, it would now empower and protect the rights of people living with HIV and also cut down on HIV criminalization.
Also, I plan to write an autobiography.
Last but not least am also looking forward to making organ donation by people living with HIV possible here in India (it is passed in the USA through HOPE Act) – It is just a start.
Could you also share with us that how you manage to organise funds for every program?
The Well Project relies on the kindness of individual donors, private foundations, and corporates to fund programs and initiatives. With their support, the organisation helps research related to women and HIV, promote better standards of care, further public awareness and education, and most importantly, connect people in search of a trusted, supportive, and protected environment.
What do you consider to be your greatest achievement so far?
Bringing back the smile on the face of people who had undergone depression and giving them a new lease of life. Every soul that I am able to save, whose lives matters are my greatest blessings.
How is digitisation helping you as an HIV Activist?
I am a person with hearing disability. Digital platform has a wider scope to connect and reach out via emails, chats, websites and blogging. I meet people face to face after being connected through a digital platform. I DO take my work beyond World Wide Web too, onto the field – but it starts virtually and then finally decide upon meeting and people personally.
What advice would you give to budding Activists who aspire to change the society?
Fight against the evil norms of the society and bring in the change. Give real life examples – as people believe more in “seeing” than just hearing. Am sharing with you the link on how to be a better activist and help change lives and also the mindset.
ANYONE can advocate…
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