Last month I was in Vienna waiting to fly home, having spent a week at a seminar called Transforming Roma Narratives in Health Care that Narativ co-led with the with the Open Society Foundations in Salzburg. Walking through the crowded Nasch Markt, I noticed a beggar woman sitting on the ground. She was what up to that time I would have called a gypsy woman. Her skin was dark and wrinkled. She sat cross-legged with a cup in her hand. I looked at her and we made eye contact. As our eyes met, she transformed into one of the Roma grandmothers I heard vividly described in the workshop. Suddenly, she was somebody’s grandmother. We held each others’ gaze and I handed her a euro. She bowed her head and said “God bless you.” I walked on.
For the two days between the Roma seminar and this day in Vienna, Murray and I had been at Radboud Medical Center in Nijmegen, the Netherlands. We opened a conference called the European Listening and Healthcare Conference with a performance of Two Men Talking. The conference focused on doctors and patients, and how things can go right when they listen to one another. At the end of the talk I felt it important to identify myself as a non-Roma person, who stands in solidarity with Roma doctors and patients everywhere who are working as agents of change. The recognition that a “non” identity can be a powerful act of solidarity comes from my own experience with Two Men Talking, which Murray and I have used to break down stigma and secrecy around HIV. As an HIV positive person, it has been empowering to me and to HIV positive audience members, to hear Murray declare “I am HIV negative, and it is my responsibility to love and understand my HIV positive brothers and sisters.”
The declaration of a non-identity can constitute the ethical use of an existing power hierarchy, when a privileged or dominant group (HIV negative, or in my non-Roma doctors) stands in solidarity with the marginalized group (HIV positive, or ROMA people).
My new identity as a non-Roma in solidarity with Roma, came from spending several days listening to stories of Roma and Non-Roma people in Salzburg.
A story that moved me deeply was that of a young Roma doctor, about to complete his studies. He is light skinned and says that he could pass for non-Roma. However, he views himself as an agent of change. For this reason he speaks up with his colleagues identifying as Roma. He is well spoken, intelligent and successful. He says that this is his way of changing the narrative about Roma, showing not telling that not all Roma are the way others think they are. His colleagues acknowledge his being different from the “other Roma”. He tells the story of how when a Roma patient is admitted to the hospital, there may be twenty, thirty of more people in the parking lot outside. They are in nice cars, and eat salami, and make a lot of noise. He explains that while he understands that they are there worried about their family member, to the hospital staff they are a menace. His colleagues look down from the window and say “look at them, you see nothing has changed, they are not good Roma like you are.”
He does not know what to do. Should he identify with the people in the parking lot and defend them, or should he identify as a doctor in the hospital and accept that these people are causing a disturbance?
This story evoked much discussion. What if the hospital staff went out to the parking lot and let the people know the status of their family member? Would this quiet them?
Someone said that people should understand that Roma are very connected to family, and unlike many cultures, when one person is sick, it’s the whole family who show up for treatment. This is a real moment for transforming a narrative. What if a family showing up in solidarity with their loved ones could be viewed as desirable rather than as a disturbance? Someone else suggested that the hospital should invest in a place for them to wait that is more appropriate than the parking lot.
A non-Roma doctor in the group says that if there are hospital rules they should be obeyed by everyone.
A powerful narrative to emerge was that it is the responsibility of “successful Roma” to change the narrative of the Roma in general. Specifically, it is the responsibility of Roma doctors to change the narratives about Roma in healthcare.
One Roma person asked the group if she could count on non-Roma people to stand with Roma as agents of changing the narrative about Roma in healthcare, and this resulted in two new identities for me, ones I had never considered. I am a non-Roma doctor who stands in solidarity with Roma doctors. I am also a non-Roma patient who stands in solidarity with Roma patients.
One Roma woman tells of her friend, who never married. She knew that the reason is that he was gay. However she never asked him. She watched his shame and embarrassment as others asked him, but she never said anything. She said to Murray and me, after we spoke about being gay, that it is a huge disgrace in the Roma community. “I judge you” she said sobbing. She explained that her friend was ill, and though she brought him food every day, she never addressed the issue of his being gay, which she knew was causing him so much distress, and which had resulted in his being thrown out of his family. He ultimately died alone.
Another narrative to emerge was that of a leader of an organization in Salzburg that provides services for Roma, including food and shelter. He said that Roma people are lovely people who are very musical. One of the participants in the group challenges this assertion, saying that it is a stereotype. She asks him directly “do you have any Roma on the Board of Directors of your organization?” She goes on to say that it’s very important to have Roma people at all levels of management, in organizations wanting to help the Roma.
One of the Narativ principles that guides my work as a doctor, relationship coach and storyteller is that it is how one listens that shapes the way other people speak. If one listens openly without judgement, people will feel the safety of that listening container and will feel free to speak openly and honestly. Conversely listening with judgment shuts the speaker down. “Knowing “ is not always helpful. Listening from a place of not knowing, what Buddhist teaching calls “ beginners mind” allows you to begin to understand the world of another in a deep and fully embodied way.
I come back from the conferences in Europe, knowing more about knowing less. I learned what I did not know about the Roma, and I learned that listening with judgment and preconception is bad medicine.
Paul Browde, M.D.
Founder, Narativ Inc.