The space between: Stigma among MDR-TB patients in Mumbai
By Taanya Mathur & Francesc Galban Horcajo
TB patients in India continue to face stigma and discrimination on a daily basis. Misconceptions like TB being a ‘poor man’s disease’ or a curse has led to a callous attitude towards the very people who need our compassion and support the most. Hamari Awaaz, meaning ‘our voice’ in Hindi, is a photography book that attempts to express the stigma MDR-TB patients suffer. Nine patients photographed daily situations that related to a specific stigmatising feeling, and we used this to discuss how they felt, and the root cause of their pain and sense of isolation.
This blog is a behind-the-scenes look at the work that went into the book’s preparations, and the day of the launch. For us as well as for the patients, the journey quickly turned into the final destination. The relationships and bonds we created with each other have been as important for us to understand what patients go through as it has been liberating for the patients themselves, and to move from patients, to advocates and ultimately to activists. As one of the patients said during the launch, “with motivation you can achieve anything in your life!” We hope that Hamari Awaaz is a testament to this.
“I just want to advise other TB patients […] you may be facing a lot of pain or may be feeling depressed by the behavior of people… just don’t give up! Stand and fight the disease until your last breath! […] Don’t lose hope!”
Our voice
Emotions run high on the day of the book launch. It has been a long journey to get to this day for these TB survivors. As Kushi, a 23-year-old MDR-TB patient and one of the authors, clearly puts it, “The TB journey is not easy, it has so much physical, emotional and mental pain […] It takes time to go back to a normal routine. We as patients do not have the same life before TB and after TB”.
It is the 1st of March 2021, and as we get closer to World TB day, the authors of Hamari Awaaz get more and more excited, convinced that their voices will be heard. Heena, another author sums up the mood like this, “I am excited and nervous […] It took so much effort and research […] I hope this project can change peoples’ mindsets”.
Understated and timid, one might think that Kushi, Heena and the rest of TB survivors here today are mere observers, but it could not be further from the truth. They have collectively put together the book and organized the event, working side by side for over five months. Nothing defines the sense of ownership better than Heena’s response when asked how she felt when she saw the book for the first time “It was a great feeling. The entire team’s hard work paid off […] After seeing Hamari Awaaz I felt it’s my storybook. I felt as one writer felt when seeing his/her book for the first time…excited, nervous and confident”.
My plight
“Yes, I am afraid […] I know my family will leave me alone if I get infected again”, Nishi continues after a brief pause. Her left fist clenched, resting gently by her hip, moving to emphasise the end of each statement. Her voice is strong and the pace fast, nervous at times. You can see that it has been rehearsed, many, many times before, but her voice still maintains a warm spontaneity.
Nishi is one of the nine multi-drug resistant tuberculosis patients that today are presenting Hamari Awaaz. It would seem that after all they have endured, an oral presentation would be a breeze, but Taanya Mathur, co-principal investigator of this work, says, “It is very important to them. They don’t want to make any mistakes; they are very nervous that their English won’t be good enough”.
The session begins. A small hall with seven tables separated 2m from each other. Only two people per table and hand sanitiser on each table. Due to the Covid-19 regulations, the organisers have not been allowed to set up a round table as initially planned. Social distancing and masks are now norms, part of the daily routine of most people in Mumbai, and I realise that in normal circumstances, it would have been easier to identify the TB patients. They would have been the only ones wearing masks. Social distancing whether self-imposed or forced upon, is nothing new for TB patients.
I turn a page on the e-book shared with attendees, and I find a photo of an empty bench in a public park. It looks late at night; the only time of day when most people become anonymous amidst the colourful hustle and bustle of Mumbai. Kushi expresses it this way in the book: “To avoid uncomfortable situations, I just like to keep myself separate. I am more comfortable with isolating myself”. Mahera, a patient also in her early twenties, took a photo of an empty plastic chair in her living room. The chair carefully placed by the window, the brightest part of the living room, has remained empty for some time now. “My uncle would visit 2-3 times a month […] then one day he found out that I had TB. Since then, he stopped coming home. This is a picture of an empty chair where my relative [uncle] used to sit”.
During Covid-19, the voices of those affected by the pandemic have been heard globally, a privilege TB patients have rarely enjoyed. Many of us have seen how daily tasks have been intertwined with the mechanical routines of prevention. Framed within the new normality, the sense of a shared journey and a collective necessity have given us some comfort. As Nishi put it during the talk “[with Covid-19] people have become more aware and tolerant of people wearing masks”. However, for TB patients, daily routines have traditionally been turned into reminders that there are societal red lines that only apply to you. Your individual voice is irredeemably silenced by a fearful collective setting the norms. Your day-to-day picked apart, meticulously broken down into preventative tasks, all performed under a veil of secrecy and fear.
As the presentation progresses, patients grow confident, and the tone turns firm and determined. One of the patients advocates to improve the way they are being treated by healthcare workers and challenges the audience: “How can you ensure that the field nurses that you have trained speak to us and treat us like human beings?”. The audience is left stunned, but quickly reacts, and people start nodding. He continues, “How can you ensure that no other patient has to go through the trauma and humiliation of being discriminated like we have?”. Although as healthcare workers we believe ourselves to be the solution, it is hard to be faced with the reality that, at times, we can be part of the problem.
What now
The presentation ends with the collective agreement to work together to end stigma. The uncompromising plight before this audience is not a trivial matter. Most of us have not been addressed by patients like this before. We move comfortably in the privileged position of advising and directing patients. We lead them towards what we believe is the right way forward, but the question remains: do we really listen?
If there is one thing we have learned from Hamari Awaaz it is that exclusion and discrimination can take many forms. Stigma can be expressed in individual snapshots that when put together define a collective voice, expressing pain, loss, hope and self-affirmation. Surrendering to the distance that separates us from each other is admitting that stigma is a bi-product of the disease itself, as opposed to a consequence of how we treat people. The aspirations of all patients in the room can be summarised by one uncompromising answer. When asked if they felt they would have needed more support during treatment, one of the patients quickly responded, “More support? Yes, we felt like we needed a space where we were treated humanely”.