There are two kinds of people in this world. One, who succumbs to the problems which arise, and the other, who takes up that problem and strives to eradicate it forever.
Jyoti Dhawale falls in the second category. Generally, when people get diagnosed with HIV, it becomes difficult to fight for yourself, let alone others. Being tested HIV positive, Jo (her cute short name) took up the responsibility to fight not only for herself, but on behalf of every AIDS patient who gets discriminated just because…..you know what.
Jyoti has never allowed her problems to get the better of her.
She has been suffering from hearing loss ever since she was 3 years old. Then she was tested positive due to medical negligence in the year 2005, when admitted to undergo forced abortion for the fourth time.
Life has never been easy for her, and she agrees, “Life is not a bed of roses, it’s a bed of thorns.” But these obstacles have only made her stronger. She constantly works for People Living with HIV/AIDS (PLWHA), and is a prominent activist for LGBT rights.
It feels great to have crossed paths with such a strong headed person like Jyoti. She becomes a role model for everyone who comes across her, and I was no exception. We didn’t even realize when our light conversation about media and news on FB took a serious tone.
There was so much I wanted to know about her. So many questions in my mind, and I had to ask her.
What was your first reaction when you learnt that you were HIV positive?
Disbelief. I refused to believe. No way can that be true. I was totally stunned. Too stunned to believe it to be true. I was tested negative when I got married so there is no way I could have contracted the virus other than through medical negligence, which I am sure of.
When did you realize that you need to take a strong stand against discrimination of HIV positive people? How did it all start?
The day I came to hear and see that even the innocents are getting discriminated against HIV, that’s when I decided enough is enough. Why they have to suffer and go through the pain because of other’s ignorance? Why do they have to endure the virus? Why can’t people just live and let live?
Many don’t even know the right way of taking the medicine or even the “importance” of it. HIV is considered a “taboo” subject that needs to be erased. Ignorance only leads to FEAR, and that fear leads to STIGMA and DISCRIMINATION. It is to be understood that HIV and AIDS are different, though of the same virus. And also HIV is no more to be considered a “gay man’s disease” or “a sexual disease”. Gone are the days when it was contracted only through multiple intercourses. Now there are many other ways to contract the virus. So, when you come across a person living with HIV, PLEASE do not judge them.
What were the hardships which you faced in your early days of activism?
Of getting loved and being accepted. Coming out of the closet was the hardest part. I lost many friends I thought I called my own. Regarding dentists and hospitals, stigma was at the worst.
Dentists refused to treat people living with HIV for the fear of losing their patients. Only the multi-specialty clinics could take them in, and poor people are unable to afford such services. Hospitals “label” HIV patients and that need to be stopped. Such discrimination is wrong. And that’s where the activists are drafting a law (HIV/AIDS BILL) which has already been passed by the Supreme Court but yet to be passed by the Parliament.
What do you think is the biggest reason behind the huge stigma attached to being HIV positive?
IGNORANCE. Time has changed. Even medical science has advanced. With better medical care facilities, life expectancy for people living with HIV has been made available. Unfortunately, not many know about this as its reach is few. How many know about PEP and PREP? How many people know that ALL long-term medicines have side effects (not just HIV, but all) but if certain care and precaution/adherence is taken, we can take care of our body in a much better way – it is up to US in how responsible are we in how we understand our body better and how we take our medicine well. The onus lies on us too to take daily health check-ups and it is society’s responsibility to support and encourage each and everybody to look after their health. Stigmatizing them is not going to help.
You are an inspiration to many, but what inspires you to take up such responsibilities and keep moving forward?
Seeing people suffer for no fault of theirs. They need to understand that life is meant to be a struggle on the path of suffering and one needs to emerge a victor. Sufferings only make you stronger, not weaker. They make you endure the pain so that you can live and understand the pain of others. And if you don’t, then you are considered “weak”. Because this is just one life – either you live and fight to get it, or die a loser. Yes, never feel shy asking for help though. If you feel that you can’t fight alone, ask for help. Even the mighty ones do seek help.
What message would you like to give anyone who has ever come across a person having HIV?
UNITED for a cause – UNTIL there is a cure. Against Hatred. Against Stigma and Discrimination. Against HIV, for HIV.
In the way she answered my questions, I could imagine the spark, or I should say fire that she must be having in her eyes while explaining those things to me.
And that is the kind of fire which every one of us should have within ourselves to fight along HIV patients, not against them.
