An Obituary for Iulian, a Romanian XDR-TB Patient, Husband, Father, and my Friend

© Jonathan Stillo. Iulian patiently sat while I photographed him. This is the first shot and my favorite because he looks so peaceful.

On May 5th 2012, Romania lost one of its most loving citizens at the young age of 42. This is an obituary for Iulian Ilie Dobre, one of the 1,500 Romanians who die of tuberculosis (TB) every year. When desperately poor people like him die, few people notice. Beyond his immediate family, I don’t know how many will miss him. But Iulian’s death matters. It matters to me and it should matter to you. Even though this man had virtually nothing in this world, he had a wife and little girl who are now lost without him and a son who is starting university in the fall. He was a responsible person, but he was poor. I knew Iulian for the last two years of his short, hard life. During that time, I watched TB turn him from a strong young man into a shadow of himself.

Many people blame TB patients when they don’t complete their treatment. They don’t know that treatment for drug-resistant TB (MDR and XDR) is two years long and requires taking handfuls of pills and receiving daily injections. They don’t know that the medication makes you feel sick so you cannot return to work. Most of all, they don’t know that the poorest people need to return to work. There are no “sick days” for the poor.

This is a remembrance for a patient whom I admired and respected. He helped me understand TB in Romania and how it both exacerbates and creates poverty. Secondly, his death makes me face the questions that always plague me: What is a researcher’s responsibility to their research participants? What do we owe to the families of our participants after they are gone? How do we respect their contributions to our research?

Iulian and I met shortly after he was diagnosed with MDR-TB (Multi-Drug Resistant Tuberculosis). I had never heard anyone speak with such love about their family. Many patients would tell me they loved their families while I was doing interviews at the mountaintop sanatorium, but when Iulian said it, you knew it was true. He glowed when he talked about them. He was tortured by his separation from them. He especially missed his little girl.  He would tell me about life in his village, and how he loved to watch American Western movies. He just seemed like such a good person.

© Jonathan Stillo - The sanatorium had a balcony connecting all of the rooms. Drug-resistant patients like Iulian lived on the upper level.

Iulian and I became close through a series of strange coincidences. I would frequently leave the sanatorium, sometimes for months at a time. Anytime I returned from a long absence, Iulian would have also just arrived. While I was gone, he was back in his village trying to complete his treatment. He would leave the sanatorium before his treatment was finished to return to work to help his family. Inevitably, he would relapse and we would meet again at the sanatorium. Iulian and I enjoyed talking with each other. He used to tell me that talking to me made him feel calm.  Most of the time, Iulian was stressed. He would constantly worry about his wife and little girl. His phone would ring and his wife would tell him they didn’t have enough money for food or medicine. He felt powerless.  Before he became ill, Iulian had worked in Spain painting houses and in Greece picking fruit.  He told me he loved to work, especially with animals at home. “I would work another 30 years and I wouldn’t ever feel upset or sad, if only I were healthy.”

Iulian’s daughter suffered without him. He told me once that she had found one of his old hooded sweatshirts still smelling of gasoline because he worked with cars. Her mother caught her hugging it and crying. She said “it smells like daddy.” It was one of the saddest things I had ever heard.  In less than a year, he would be dead.

Iulian's profile in the TB Voices publication. The full text can be viewed here.

Last summer, I approached Iulian with a proposition from the TB Europe Coalition to have his story included in a publication called “Tuberculosis-Voices in the Fight Against the European Epidemic.” Before they contacted me, they couldn’t find a Romanian patient willing to tell their story and be photographed.  I sat down with him and told him that Romania needed people brave enough to be advocates, to tell their story. I was nervous; it was a big request.  I told him that when they asked me if I knew a patient who might do this, he was the person I thought of. Not only did Iulian agree but he insisted that his real name be used. He said that he was not ashamed of having TB and wanted the public to know about the disease so that people wouldn’t die of it anymore.

Countless people have read Iulian’s story by now. His was one of several  presented in a European Parliament session about TB. There is also an article about him on pg. 81 of the  Parliament Magazine and a quote of his appears in a new WHO brochure . Unfortunately, in March, just a few months after these publications came out, his TB became XDR (extensively drug resistant). He died less than two months after that. I last saw Iulian at the end of March when I brought US Embassy staff to the sanatorium where I did my research. The US Embassy in Romania held a fundraiser to buy toiletries for the patients and even Vice President Joe Biden and US Ambassador to Romania Mark Gitenstein participated .

Vice President Joe Biden and U.S. Ambassador to Romania Mark Gitenstein participated in the week-long marathon for Romanian TB patients

I wanted to show the Embassy staff how difficult life is for poor Romanian TB patients and their families. We went room by room accompanied by the Romanian National TB Manager and handed out little care packages to the patients. It was a bittersweet return for me because so many of the patients I had grown close with were already dead. About halfway down one hall, our procession came to a halt and a nurse told me there was someone who wanted to see me inside. As I got closer I saw it was Iulian. She whispered in my ear that he was much worse and now had XDR. She started to cry. As I entered the room he had a huge smile on his face and said “Hey Jon!” He was smiling ear to ear, but looked terrible. His cheeks were sunken and his skin was hot with fever.  He looked so frail.  My heart sank.  He told me that he was much worse, but that he was still fighting. He died two months later in his home with the people he loved so dearly. He once told me: “Here in Romania, if you don’t work, you starve to death. There are two options: you take the TB pills and get better but starve, or you work and have to come back to the sanatorium. So it’s a lose-lose situation.” These words couldn’t be truer. In Romania, every day, TB patients are forced to make impossible choices between their own well-being and that of their family. Iulian chose his family. I’m sure he doesn’t regret it.

Iulian’s death may not have been caused by, but was certainly hastened by a shortage of one of the drugs he needed. Nine months before he died, his local dispensary, as well as the sanatorium, were out of ciprofloxacin. This drug is inexpensive and since 2008 has been replaced in World Health Organization treatment protocols by a more effective but expensive one (ofloxacin). Romanians are guaranteed free TB treatment, but drug stock-outs are common. This stock-out and subsequent treatment interruption probably caused Iulian to develop XDR-TB.

As a researcher, but also as a human being I feel a responsibility to Iulian and his family. He wanted his story told. He wanted his life and death to mean something. Now that he is gone, I owe it to him to make sure that he is not forgotten. This is a man who wanted desperately to get better so he could return to his family. He stopped taking his treatment and returned home to work when they could not pay the bills.  Every single TB-related death in Romania is a tragedy, but this is one of the worst—to lose a man who was so young and who really wanted to get better. Iulian didn’t have the vices like alcoholism that people and even doctors use to shift the blame to the patient. He didn’t want his daughter to grow up without a father. Ultimately, what killed this man is more complicated than tuberculosis. Iulian’s death certificate says that he died of tuberculosis, but more accurate causes of death is poverty and living in a country that is unable or unwilling to dedicate the resources necessary to ensure that even the poor can be cured of TB.

In his last year of life, people all over the world read about Iulian.

In his last year of life, Iulian did something that few Romanians with TB have had the courage to do. He wanted people to know that he was suffering from this disease so that others would not have to. Most Romanian TB patients would disagree with him. They feel too ashamed to tell their stories and reveal their identities.  I’m proud of Iulian and am happy to have been a part of his life. I hope his family knows how important being in those publications was for drawing attention to the problem of TB in Romania. Thousands of miles away from his village Iulian told me that he wanted to make a difference, and by telling the world his story, he did. It is a shame he didn’t live long enough to see.

I am going back to Romania for another year in June. I will visit Iulian’s village to pay my respects to his wife and daughter. I will be bringing them some money, the photographs I took of him and two and a half hours of my interviews with him on audio CDs. I have written before about what to do with the recorded interviews of dead patients and the balance between guaranteeing their privacy and giving their family the gift of some of their last words. (See my post: The Trobriand Islanders Never Friended Malinowski on Facebook. I wrestle with the same issue after a 20 year old woman died.) It’s not a decision I take lightly. Iulian put his trust in me and gave me permission to use his words and photos as I saw fit to help fight TB. I know he would want his family to be able to hear him telling me how much he loved them. His little girl deserves to hear how much he cared for her. As a human being first, and an anthropologist second, this feels like the right thing to do.

I Admit it, I Google Myself: The Other Jonathan Stillo

On March 19th 2012, the Tokyo district court issued an injunction ordering Google to suspend its autocomplete function after hearing the case of a man whose name generated suggestions of criminal acts which he did not commit.  He claims that the search results caused him to be suddenly dismissed from his previous job and have prevented him from getting new employment.

Oxycontin or "hillbilly heroin" is really strong stuff. Creative Commons License photo credit:

Similar cases have been brought in France and also in the US. Google maintains that they have not violated any laws.  I have been well aware of this issue since 2009 when I discovered that the top autocomplete suggestions for my own name were “arrested” and “Oxycontin”

Today, thankfully, “arrested” is no longer an option, but “Oxycontin” still is. In 2009, I discovered there was another Jonathan Stillo, 10 years younger than me, blonde, living in Jersey who also shared my love of grappling. The internet felt too small for two of us. I had just won four dissertation research grants, was living in Romania researching TB and for the first time in my life, making a footprint on the internet with my scholarly activities. At the same time, the other Jonathan Stillo was in New Jersey getting arrested along with his father and older brother for allegedly running a 1000 pill a week Oxycontin ring.

My namesake eventually completed a diversionary program and had his record cleared. His father and brother are still awaiting trial. For people with common names like Joe Smith, being found on the internet is difficult, they melt into the woodwork. But in a case like this where there are only two of us it is more complicated. Jonathan W. Stillo was captain of the wrestling team at Centenary College, but mixed in with his achievements are a couple of my own (much less impressive) high school wrestling results and Brazilian Jiu-Jitsu competition wins.

Just when I thought that a recent summer in Romania which generated internet stories from the US Embassy, major Romanian newspapers and other media had finally pushed the other Jonathan’s alleged prescription drug ring involvement out of my top search results he went and upped the ante by allegedly crossing into opposing traffic and driving headfirst into an oncoming car in January 2012.  I can’t speak to his motive but if it was not alcohol or drug related maybe it could be Fight Club style enlightenment seeking.

Stop trying to control everything and just let go

I am starting to realize that as long as Google’s algorithms favor arrests and car crashes over academic results there is no way my name will get top billing. The good news is that the other Jonathan even after sustaining head injuries, seems to have recovered from the crash.

I spent most of my life with the assumption that I was the only Jonathan Stillo. I grew up in a pre-internet era and the only people I knew who shared my last name were my immediate family. With the growth of search engines like Google, the digitizing of old newspapers and the fact that virtually everything one does makes some sort of mark on the internet these days, my own world has grown quite a bit. I feel a bit like one of these newly discovered tiny chameleons.

© Frank Glaw Tiny chameleons discovered on Madagascar.

They were happily living in Madagascar in on tree branches 4” inches from the ground and managed to go completely unnoticed.

While searching Google results for this post I also discovered that Samuel Stillo an assistant mayor in Illinois pleaded guilty to bribery charges in 2006 and Patrick Stillo an asphalt foreman in Illinois was arrested for corruption in 2004. And then there is John F. Stillo who according to the who according to the Ohio Attorney General’s Office was released from prison in 2009 for “Gross Sexual Imposition” and is a “Child Victim Predator.” I don’t know what all that means, (and also question the logic behind these online sex offender registries)  but I am happy that I go by Jonathan. So far as I can tell, these Stillos are (thankfully) not related to me.  However, I can’t help feeling a hint of pride that someone with my family name (more commonly held by masons, construction workers and security guards) was actually able to become an assistant mayor in the first place.

As I am writing this I’m chuckling to myself wondering if Jonathan W. Stillo is ever annoyed at me for cluttering up his internet search results with all of my tuberculosis advocacy  the way his wrestling results, car crash and arrest distract from mine?

In my own effort to win greater control of my identity on the internet, I recently purchased the domain names and, though I have little idea how to actually turn the “parked” websites into actual pages with content, it does my heart good to know that I have at least staked a claim and put up a virtual fence around it.

Following Jonathan W. Stillo’s life on the internet, I can’t help but feel for him. His family has hit a rough patch and after that car accident he is lucky to be alive. He seems like an all right guy, but at the same time I wonder if one of my students or a prospective employer might get us confused. Sure with within a few minutes one can easily tell that our ages and locations don’t match up, but will the searcher put in enough effort to discover this? Like much of the potential risk and benefits of new web-based technologies, all of this is unknowable at this point but we ought to seriously consider the implications that negative information (even if incorrect or about someone with the same name) on the internet can have on one’s future prospects, be they aspiring young professors or their alleged drug-dealer and child victim predator namesakes.

Joy and Laughter in a Zone of Social Abandonment?

My last post, Saving Lives or Just Documenting Suffering, was hard to write. I received tearful emails over it and more than a few hugs. This post is a lighter take on life at the sanatorium. In between the tragedies and high-definition misery, there is laughter and joy. I want to talk about these moments because I don’t always do a great job of conveying the positive. When your research is based on suffering and death, you tend to think of those stories as being the most important to tell. And it is true, people need to hear these stories and be moved by them so that things change for the better. I try to bring the reader into the life of the patient, to let them see how lost and hopeless they feel. I overwhelmingly focus on sad moments because misery far outweighs joy on top of this mountain. The joyous and hilarious moments, don’t get published, at least not yet, but they are important too.

Going through the nurse’s logs, I noticed that some patients were frequently “missing” when the nurses take roll and give out morning medications. I always wondered, “where could these men be?” During an interview, one of these troublemakers asked me if I wanted to go hiking in the mountains.  Some patients can scarcely walk out of their rooms, but others are well enough to explore the surrounding forest hiking in the mountains and gathering wild berries and mushrooms. One day, I accompanied a group of them. It was late spring, but it is always cooler on the mountain. I had no idea where we were going, how long we would be, or even who some of my companions were. We made small talk and walked along, one older man was still wearing his pajamas and gathered wild mushrooms as we passed.

Our pace was slow and deliberate. The terrain was steep and loose from recent rain. Each of my companions carried a hiking staff cut from a tree branch to steady themselves as they walked. They joked that these could be used to fight bears as well. I laughed and immediately felt guilty for taking solace in the fact that if we were chased by a bear, I would definitely not be the slowest in this group. As we walked, the incline grew steeper. We grabbed fistfuls of tree roots as we progressed. Suddenly, a cell phone rang. For TB patients, phone calls are not to be missed. When patients are so far from home, and without more modern methods of contact like the internet, phone calls are what keep families together during these periods of absence. Within seconds, Gheorghe, a good- natured patient in his late 40s, was talking to his wife who called from hundreds of miles away. He answered with a breathless, “hello?” Gheorghe did his best to compose himself and sound normal, but she wanted to know why he was out of breath and proceeded to chastise him for being a bad patient. By this time, none of us could hold in our laughter as he tried to convince her that he is getting better, it was just a particularly difficult hike and everyone else is tired too. When he hung up, he smiled sheepishly and said “I’m in trouble” and we continued up the mountain. 

Romania is home to half of Europe’s wolves, bears, and lynx. When I first arrived at the sanatorium I was told that the large packs of dogs that live on the grounds keep them at bay. I still have never met a wild bear, despite tempting fate several times with late night runs through on the mountain. These dogs live short, rough lives surviving on leftover food from the kitchen, scraps tossed from the balcony by patients, or slipped from the pockets of this anthropologist to gain their trust and friendship. The dogs bring life to the grounds with their barking and playing.

When puppies are born, patients, staff and especially me, fawn over them. It might seem strange at first to find packs of dogs living at a medical facility, and in fact Romanian journalists have criticized the practice elsewhere in the country. But the dogs live outside, and the patients live inside, it is not as if they are sleeping in hospital beds. One day, surrounded by bouncing puppies I couldn’t help but think that in America, this would be called “animal therapy” and is offers scientifically documented physical and mental health benefits.  Romania may be well ahead of other countries in that any patient who wants can form a friendship with one of these dogs, without the need to pay a high-priced animal therapist—you just reach out and pet the dog.

Joy at the sanatorium can come from seemingly insignificant things. One day, I was lucky enough to watch Cristi, a boyish, 40 year old MDR-TB patient, make homemade French fries on the balcony in a little electric skillet. He is poor and must have borrowed the skillet from a nurse or cleaning person. He lovingly cut two potatoes into little sticks and fried them in some oil. As he was carefully turning them, I watched him grinning ear to ear. That night, he ate like a king,

Winters on the mountain are long and it seems like the snow never ends. The trees lining the road look like dry skeletons. When spring arrives, it is as if the whole world awakens. I was walking down the road after a long day of patient interviews, when I heard children giggling and one of them called out in English “Mister, where are you going?”  I looked around and didn’t see them until I saw the leaves of a nearby tree shaking with the laughter of smiling children. Of all the photos I have ever taken, this is probably my favorite. It reminds me that even in a place of such misery, there is the laughter of children whose parents work there. These children grew up here on the mountain. To them, this is not a place of abandonment, it is just home.

Saving Lives or just Documenting Suffering?

© Jonathan Stillo - Stefan reflected in a mirror staring off the balcony. He would do this for hours when he especially missed his wife and 13 year old son. He died a few months later at the age of 37.

Last week, the New York Times Lens Blog highlighted the work of Misha Friedman, a Moldovan-born photographer who has documented tuberculosis patients in the Former Soviet Union.  Friedman questions whether he has done any good for the patients, in the post “Saving Lives or Photographing Them?” “Most of the people you see here are dead,” Friedman tells the interviewer.  “My images have not really helped them. Maybe they’ll help people in the future. Maybe they’ll help with fund-raising here and there. But to these particular people, they did not help.”

What Friedman is feeling is the same thing that I have been troubled by—that after two years of anthropological fieldwork which included living at a TB sanatorium [click here to read more about what I am doing in Romania], did I do anything for the patients whose heartbreaking stories I collected? It is easy to say in the abstract that one’s photographs or research will help hypothetical future patients, but what about the person in front of our lens or talking into our voice recorder?

It’s like a collapse. Since I caught this disease, I lost friendships, social circles, acquaintances. They marginalized me, bit by bit. You’re no longer seen with good eyes, no longer welcomed. You’re not in the position of satisfying your needs, because you can’t work for a period of time, especially if you don’t recover to restart your work you slowly crumble as a whole. And you end up alone. – Stefan age 37 a Romanian MDR-TB patient shortly before he died.

We are losers in society. And when you see yourself, the way you are now, and you know what you used to be, when you mattered, and worked… it’s hard for you. This is why we say we are embarrassed, because you don’t matter anymore, to anybody. Mircea 55, dying of XDR-TB.

Mircea’s bright blue eyes well up with tears as he tells me about is life before he contracted tuberculosis in 2005. He is a tall man with large hands who used to be a coal miner. Now, he looks much older than his years and he always looks sad. He hasn’t seen his family in a very long time. No one comes to visit him at this mountaintop Romanian TB sanatorium. Most of all, he wishes he could see his little grandchild. He doesn’t have any pictures, he says it hurts for him to remember those better times. The drugs that Mircea is taking are not going to cure him. XDR-TB or Extensively Drug Resistant TB  is resistant to most common treatments. Before I left in August, I took some portraits of Mircea on his bed, and had them printed for him. He didn’t remember the last time someone took his picture. Now at least his family will have something to remember him by. When I return to Romania next month, I don’t expect to find him alive.

© Jonathan Stillo- The long hall leading to Mircea's room. Many of the patients are too ill to reach the staircase at the end.

Before I left for Romania in 2009, my department chair pulled me aside and gave me some advice. He told me he was worried about me–that as mentally tough as I thought I was, conducting this research was going to be so much harder on me than I thought. He asked me to please take care of myself.  At the time, I dismissed what he said. I have always worked with marginalized and sick people, homeless people, sex-workers, crack and heroin users.

I think I realized that I was in over my head when Mr. Popa died. I remember sitting on his bed watching his sunken-in chest moving up and down with each strained breath. He told me he was afraid to go to sleep for fear of dying. I held his hand and could only focus on how cold it was. He died crying, waiting for his son who would never arrive. He wasn’t an old man at 52, like many patients he didn’t even  make it to retirement age.

© Jonathan Stillo "The Last Garden of Mr. Popa" published in "Tuberculosis: Voices in the Fight Against the European Epidemic" by the TB Europe Coalition and Results.UK

I remember meeting with master’s student who was transcribing some of my interviews and warning her that the content is heartbreaking and that she would have to be able to handle that. To this she asked, “so how are you handling it?” She caught me off guard and I replied with complete honesty, “I’m not handling it well at all. I’m a mess.”

Living at the sanatorium, listening day after day to people who had lost hope I soon began to realize that for many of these patients, there would be no happy ending, no recovery and no beautiful reunion with their family. Many of their families had moved on without them. Their lungs were riddled with holes and in some cases, the medicines simply were not working. They would tell me “yes, TB is curable, but not for me.  All too often they were right. They would die even before I was able to get the interviews transcribed. I never told my research assistants when they were transcribing a dead person’s words, but I think sometimes they knew. It always left me wishing I could have done something, for them while they were alive, besides just the gifts of coffee, chocolate, crossword puzzles and an empathetic ear.

© Jonathan Stillo- One lung X-ray. A now deceased patient was momentarily entertained when I told him a tree had grown where his lung once was.

At my best, I feel optimistic. I’m glad that people are finally paying attention to the problem of  TB in Romania, and I am happy to have become an advocate for this cause. Unfortunately comes at the expense of more scholarly pursuits (such as completing my dissertation after nine years).  I don’t know what will ultimately come out of my efforts to help the patients. Since 2011, I have worked in partnership with the US Embassy and the Romanian National TB Control Program on new anti-TB advocacy and education campaign. NGOs have used my photographs and patient stories in their publications and one of my favorite patients is even quoted in a World Health Organization brochure.  I’m working with NGOs to develop funding proposals. Lately, I have been writing things to inform and influence (hopefully) policy. The worst part though, is I’m haunted by the ghosts of dead patients who wanted me to give them a voice.  I still have nightmares about them, but not as many as I used to. When I returned to America, a colleague told me that my “fieldwork had traumatized me and I need to come to terms with that.” I had never thought of it that way. As difficult as this research was for me, it does not compare to what the patients are going through. Now that I have at least a partial understanding of what they are going through, all I can think of is how to improve their situation improved. How can I help to reduce the suffering and death that this curable bacterial disease causes? I know these are activist and advocate questions and many will say my objectivity has been compromised, but at the end of the day, objectively documenting suffering does not feel like enough.

Research Ethics in Impossibly Unethical Situations

The very existence of my research site is unethical.  It is a place of poverty and death—a mountaintop tuberculosis sanatorium in Romania where many patients are incurable. They know their situation is hopeless. Dozens of patients I have personally known died during the course of my research. Some have told me that because they are dying, they want to tell me their stories and to help those who still might live.  I enter into every interview knowing that I may not have the opportunity for follow-up questions.  My months living there were filled with ethically tricky situations, from patients (and nurses) asking for my medical opinions to being propositioned sexually by patients. The worst was when Florin a chubby-faced 20 year old patient committed suicide the same day I interviewed him. His doctor gave him the bad news that he had the same highly resistant strain of TB as his father and he would have to stay at the sanatorium much longer. He was so scared, that evening he left and hung himself. I didn’t find out until months later when I asked his father, now also dead of Multi-Drug Resistant Tuberculosis (MDR-TB) how his son was. I didn’t know what despair looked like until I saw that man, cheeks sunken in, wearing his dead son’s brightly colored hooded sweatshirt. When he finally died, I was disgusted with myself for thinking it was merciful–that maybe death was better than constantly being tortured for infecting his son with a deadly disease.   My university Institutional Review Board (IRB) did not prepare me for any of this—in fact nothing did. Here I was worrying about protecting my participants from my research, but who was protecting them from their own lives?

© Jonathan Stillo This couch, where crying relatives sit waiting for the patient to be admitted is the saddest place in the sanatorium. Sometimes, the goodbyes said here are final ones.

The most important “ethics review” I ever received did not come my university’s Institutional Review Board (IRB), or the Romanian medical ethics board which both approved my anthropological research on tuberculosis in Romania. Rather, it came from Mr. Gheorghe, a fifty year- old Roma man dying of MDR-TB,   when he stepped out on the sanatorium balcony and told anyone within earshot something close to the following: “Jonathan is a good person. He wants to know about your lives and your families. You should talk to him.” I could feel myself blushing as he said this. His opinion mattered to the other patients, especially because he was the one selling them cigarettes out of his nightstand. Suddenly, other patients seemed eager to speak with me when they had been aloof and skeptical only days before.  Gheorghe didn’t live long enough for me to thank him, he died of a “massive hemoptysis” a technical way of saying he coughed up a massive amount of blood. This is how TB patients often die and it is terrifying.

©Jonathan Stillo Hemoptysis- As patients grow sicker, they cough up blood, sometimes pints at a time.

It took years for me to obtain the official permissions required to live at a Romanian TB sanatorium. I even had to sign a waiver for the U.S. National Science Foundation that they were not liable if I caught the disease. But just having the permission of my university and the Romanian government were not enough. I had to actually ask patients for their permission to ask them about sensitive issues, sometimes asking dying patients about their regrets and about how their families will survive without them.  Part of my initial problem was I didn’t know how to ask the patients to let me interview and survey them. Following my IRB protocol, I showed them my stamped informed consent, a full page of Romanian legalese with talk of risks and benefits. I would read sections out loud and the more “informed” the patients became the more uncomfortable they became. This level of formality does not exist in most aspects of their lives. They could not understand that if I only wanted to talk with them, why I needed such involved paperwork with multiple signatures, dates and stamps.  In fact, when I submitted my original protocol to the Romanian medical ethics board, I was laughed at and told that this research did not need approval because it was not “clinical”.

What did patients care about? That I would protect their identities and that the process was voluntary. Everything else, including talk of risks and benefits, names and numbers of people to contact, made them uncomfortable.  They just wanted my assurance that I would maintain their confidentiality by not publishing their names.  Many patients did not even have an expectation of privacy and did not feel qualified to make the decision as to whether or not they should participate in my research. They did not want to hear about protocols. Rather, they wanted someone that they trusted to tell them it was ok and that they could trust me. A document from my IRB could not accomplish this, only someone else vouching for me could.

I gained the endorsement of Mr. Gheorghe by accident.  There was no plan, he just seemed willing to talk so I sat on his bed with him and asked about photographs on his wall, one of a handsome young man in a military uniform (him during socialism), another of a strikingly beautiful woman on a motorcycle (his 18 year old daughter) and my favorite, him and his wife proudly standing with their eight children in front of their rural home. He told me that doctors never sit on patient’s beds and they never ask about things like this. Visiting doctors and researchers only care about numbers and information on the patient charts. They are not interested in patient’s lives, only their disease.

In my last post, The Trobriand Islanders Never Friended Malinowski on Facebook,  I suggested that the reason for the existence of IRBs is not primarily the protection of research participants. Rather, it is to provide legal protection to institutions such as hospitals and universities which despite their non-profit status, operate more like businesses every day. Every researcher connected with the CUNY system must undergo an online ethics training course where they are without fail, asked questions about the Tuskegee syphilis study and the importance of informed consent. The problem is that researchers in any time are operating under the ethical norms of their particular time and place. Withholding antibiotics from those men long after their syphilis could have been cured is ethically unconscionable now, but then, it was not, at least to enough of the people involved. Today, it is still the medical industry (specifically pharmaceutical companies) that is pushing (and in my opinion far exceeding ethical boundaries, in spite of the presence of IRBs in virtually every medical and educational institution.

US CDC Venereal Disease Branch (1970-73) Tuskegee syphilis study doctor injects subject with placebo

In Romania, people generally don’t sue each other, especially the impoverished patients I work with. They live on a mountain “beyond the sight of God” as one patient put it. They don’t have access to lawyers and cannot even call or email the contact info on my informed consent because they lack internet access and money for international calls. When these patients give me their informed consent, it is informed by the personal relationship I have with them and those they know. They do so with the knowledge that they would have little recourse if I did behave unethically. It makes their consent all the more meaningful. Ultimately consent, at least in my research site, has little to do with my protocols and institutional approvals. For the patients informed consent is not something I read out loud to them, it is earned over the course of months through drinking coffee, staring off the balcony and exchanging stories of our families. It is something I take seriously not because of the IRB, but because I know that the people sharing their lives with me trust me on a personal level. I owe it to them to behave in a way that is ethically appropriate and respects their humanity and dignity. I think at this point we have a system of ethics approval which is designed by clinicians and enforced by lawyers for the protection of hospital and university endowments in a litigious society. It is the worst of possible worlds and despite best intentions 20 years from now, future researchers will read of all of the unethical research that took place even in this age of IRBs.

I think part of the issue is that ethical research means different things to different people and institutions. In the technical, clinical and legal language of U.S. IRBs, it means limiting “risk” to the study participants. This definition of ethics was inadequate for one of my Romanian transcribers who did not want to work on my project unless there was an actual benefit to Romanian TB patients—that I am not simply studying their “biosociality” or some other nebulous academic nonsense, but rather trying to use my research to improve people’s lives. I told her that is the only reason why I research. This is the same concern that many patients had. However, it never comes up in my U.S. ethics reviews.  I wish it did.

The Trobriand Islanders Never Friended Malinowski on Facebook

It used to be that the anthropologist traveled far from his/her home, conducted research in a foreign culture, and wrote up findings which never made it back to those who were studied . Globalization and now social media have changed this paradigm (as well as debates over who research actually belongs to and what moral responsibilities a researcher has to those he/she studies). Now, the “natives” are your Facebook friends. This a positive development, we should be in conversation with our research participants, but what does this mean for their confidentiality and privacy?

Trobriand Islanders never friended Bronislaw Malinowski on Facebook. Judging by his posthumously published diaries, he didn't like them enough to accept the request anyway.

This post is more of a question than a statement. It is about research ethics, confidentiality and social media. When I began my research on tuberculosis (TB) in Romania, I did not have a Facebook account. I never imagined that TB patients I work with would be among my Facebook friends and that they would actively share my writings using social media in which they or their loved ones appear.

First, much of my PhD research was conducted at a mountaintop TB sanatorium, that one patient described as “beyond the sight of God.” I spent over two years studying TB and much of that was spent talking to dying people and sometimes even holding their hands while they died.  The field site was amazing—visually stunning, but tragic. It was a place of abandonment where many patients would go to die, not just of TB, but also of its complicating factors: poverty and hopelessness.  Dozens of patients I interviewed are now dead, but a few of those who survived keep in touch via social media.

I first met Mariana (all names are pseudonyms) in 2009  when I attended a Multi-Drug Resistant TB (MDR-TB)  patients’  group therapy session. I had agreed  to have a question and answer session about my research and TB in general. The patients sat in a semi-circle across from me. I was nervous. My Romanian is very good, but in 2009 it wasn’t.  Worse still, I am terrible at translating when multiple people speak at once. There I was, nervous and awkward; wearing a mask that covered most of my face, trying to talk with patients about what it is like having TB and answering questions TB in America.

© Jonathan Stillo. "Hi, I'd like to ask you a few questions!" Me in my hospital robe and mask.

I was struck by the diversity of ages in the room. There were many young people.  Looking towards a group of patients I joked that this looked more like high school than a hospital. One young woman  fascinated me from the beginning. She was in her mid 20s, and looked like a skeleton floating in a fluffy pink robe.  Mariana is beautiful and despite being one of the sickest people in the ward, filled the room with laughter and jokes. Then,  after I mentioned how I wanted to improve TB treatment in Romania by working with policy makers and the government, she locked eyes with me and asked “Do you really think the government and the people in charge will listen to you?” I told her I did, because TB is a major health problem.” She replied “Then you tell them this: TB is an economic problem and patients need support.”  I would interview Mariana many times over the course of my research in Romania. I learned how she had become ill with the disease by caring for her father who died of TB, that she had a little boy and she was very poor. I have close relationships with a number of people I met over the course of my research 2006-2011, but Mariana is the only patient I really think of as a friend.  I have written about her in publications in Romanian and English. However, I faced an ethical dilemma when I received her Facebook friend request. I thought, of course I should accept, she IS my friend.  I am happy that she can actively consume the things I write about her, and that she even shares them with others (some of whom know the articles are about her and others who do not). While this added an ethically complicated layer to our relationship, I think it is a positive one. We can keep in touch more easily and she is able to read what I write about her and other patients.

“The mother of all the rabbits”

Elena was barely twenty when she died. I didn’t know what to do when her mother found me on Facebook.  I knew I was treading ethically problematic ground.  She friended me after reading an article I wrote in the Romanian popular press. She told me she knew I had interviewed her daughter before she died. I wanted to say yes, I knew her daughter well, and give her the recording so she could hear her daughter’s voice again, or at least tell her what we talked about—how even though she was dying, she dreamed of being an actress.  Finally, I wrote to her, but kept all those details to myself. I told her that I did know her daughter well, that she loved her very much, and I was very sorry for what happened. I tried to comfort her. I felt I had that responsibility.  I am a human first and always an anthropologist second. It is hard to know what the right thing to do is when you are so deeply woven into the lives of those you research.  When family members come to you asking for information about their loved ones final days what does humanity require you to divulge. I always feel terribly inadequate in these situations. Certainly not everything is sensitive information. Elena told me of how one of her happiest memories in a life full of sickness and suffering was when she played the role of “mother of all the rabbits” in a kindergarten play. Her mother might have liked to know this. She might have liked to know that I cried when I listed to the interview again thinking how her life was so full of suffering that she had to go deep into her childhood to find a happy memory to share with me.

So my question is: how do we as researchers and citizens in this new world of social media balance ethics and privacy concerns with our responsibilities to our informants (which do not end after we leave our field sites)?  What might the future look like as more of our informants also become consumers of our research through social media? How can we balance our deceased informants privacy with their loved ones desires to know what their final days were like? What about participants who choose to reveal their identities and take on advocacy roles? Is it not their choice to do this, even though it violates IRB protocol? And finally, do our informants really understand how their activities on Facebook might lead to a breach in confidentiality?

Stay, Staying, Sted? Who is Teaching these Kids Grammar?!

Note: It is somewhat hypocritical for me to complain about people’s grammar. A member of my dissertation committee has repeatedly urged me to purchase a grammar book and alludes that my unedited writing is annoying.

I’m not ready to declare the death of the English language and literature yet, but my faith has been shaken twice in the past week at my local Bay Ridge Starbucks. The first occasion involved a loud group of teenage girls trashing the novel “Catcher in the Rye.”  “Ugh…It is like the worst book ever.” Yeah. It is not even about anything.  Terrible!”  I quickly stifled my first reaction which was to curse them out for disparaging a brilliant book that ought to speak to the alienation they feel as young people.  Instead I just took a deep breath, and imagined myself as a cranky old curmudgeon in a rocking chair muttering about kids these days and just continued writing. Who am I to defend J.D Salinger anyway? I didn’t even know who he was until my mid-twenties.

Where did the ducks go?
Creative Commons License photo credit: BRNFRRR

Yesterday, it happened again. There I was sitting on the couch working on a grant proposal (edited by my girlfriend whose first language is not English, but whose technical grammar runs circles around my own, but I will get to that…) when four high school students  piled onto the large couch next to me.  The usual teen activities of passing around each others cell phones and talking about fake IDs was soon replaced by a heated debate over what the past tense of the verb “to stay” was. One girl argued at it was “obviously ‘sted’” two of the teens were unsure and didn’t offer opinions leaving only one guy arguing that it was “stayed.” I kept working on my own writing until the group had decided that an impartial arbiter was necessary so the “sted” girl asked me, “you’ll know this, “sted” is a word right? Like they left, but I sted, at his house.” I said no, that the right word was “stayed.” She looked at me surprised.  English was this girl’s first language, and probably her only one.  This wasn’t a case of an irregular form of the verb, just a simple –ed ending. So what is happening?

Could it be that my local high school is particularly awful? Technology is frequently blamed for the impending doom of proper English. I don’t think it is the problem.  There were serious worries about the telegraph ruining English prose by making it terse and choppy. That never happened. As this NPR story shows, the introduction of new communication technologies has not destroyed the English language. As evidenced by the fact that here you are reading my (mostly) proper English.

Teens are not using texting abbreviations when writing college placement exams so it appears according to researchers and I have never received student work with “OMG.” In fact, even text messages students send me often begin “Hello Professor.”  I’m convinced there is enough of a moat around formal English to protect it. Actually, this boundary is enforced by both teacher and student as I learned last semester when I  wrote “LOL” in my comments on a student’s essay. What she wrote was absurd, involving surveying people during a refugee crisis about what their favorite foods are.  I really did laugh out loud. When I handed the papers back, the students giggled at my use of such unprofessional language. I countered that, just days prior, LOL had been added to the Oxford English Dictionary, and therefore my use of it was completely acceptable, though perhaps a sign of the apocalypse. This only got me laughed at for even knowing that bit of trivia.

I still struggle with my grammar, but being in my 8th year of a PhD, my writing is much better than it used to be.  The problem is that no one ever taught me formal grammar, or at least I never learned it.  The emphasis, especially when I was in high school was on literature and creative writing. When I am feeling grammatically inadequate, I joke that I was taught grammar by hippies:

Youth Culture - Hippies 1960s
Creative Commons License photo credit: brizzle born and bred

[Flutes playing and birds tweeting in the background] “just write, just get your feelings on paper, don’t worry about the punctuation.” It is partially true. One of my favorite teachers wore Birkenstock sandals, had a ponytail and introduced me to amazing socially conscious books and how to write passionately, albeit without commas. I had a great time writing in high school, got A’s in English, but then got to college and discovered that I was clueless especially when it came to commas and semicolons, and passive vs. active voice… forget about it.

Many students are escaping formal grammar instruction or at least it is not sticking. There is quite a debate over how grammar should be taught, when and if at all.   Some students are not taught it in school or home school.  So unless the “Ellis Christian Academy” extends its K-3 program to college, this little girl may have as hard of a time as I did when I presented my passionately written run-on sentences and lack of punctuation to college professors who were not at all impressed.

So why don’t we teach grammar? And when it is taught, why aren’t students learning it? How can we explain the large numbers of college students who have poor grammar if we don’t blame the usual suspects, technology and “kids are just lazy these days?” What can we do to make sure that students as they are entering the job market can properly write a cover letter, or an email.  I think part of the problem is that no one is telling students why they need to know where a semicolon goes or the difference between “affect” and “effect” (something I learned last year finally, I think…) I explained it this way which got a few wide-eyed looks and raised eyebrows: “if you all don’t learn how to write properly, you will not get hired. Your peers are not hiring you, people like me are, and I am not impressed.”  Ugh…I have become the professors I hated in college.

Don’t Write Like A Cop

Officer Joe Friday from Dragnet–famous for getting straight to the point:

I teach in the NYPD Leadership program at John Jay College. This job comes with special challenges that other professors do not encounter. For example, my students, all active duty NYPD officers are often asked to work mandatory overtime. This semester between the September 11 10th anniversary, increased activity at the United Nations surrounding Palestine’s efforts to obtain UN membership, and lately Occupy Wall Street, there have been many empty seats.

I walk into the class and begin to tell them about the final assignment and simply start, “Don’t write like a cop, and don’t interview them like a cop.” For this assignment, I tell them, you are anthropologists and historians and not the famed officer Joe Friday.[1] For this assignment we need more than “just the facts ma’am.”

When I tell others that all my students are current police officers, they usually look at me confused not knowing whether or not to feel sorry for me. There is nothing to feel sorry about. I love doing this and the cops are some of the best students I have ever had. I have to admit though, I had no idea what to expect when I agreed to join the program last year. Now, each semester, I teach a roomful of officers who are taking classes to finish their bachelor’s degrees. The program is funded by City Council and the content is multi-cultural, anti-racist and fosters professionalism and respect.

In my course on Ethnicity and Immigration I require the students to do a series of interviews with a recent immigrant, and to write an ethnography or oral history style paper about that person’s immigration experience. This puts all of the readings about waves of immigration, huddled masses and the challenges of integration in the context of one person’s life. However, when I tell them to think like anthropologists, most imagine this:

Ethnography doesn't look like this anymore. Bronislaw Malinkowski. Original Copyright unknown

The NYPD is probably the most diverse police force in the world; many of the officers are recent immigrants themselves and very quickly realize that they are learning about their own families as well as other immigrants. Probably the most surprising thing for me is that so far, in each class there are family members of officers who came to this country illegally, sometimes fathers and mothers who were looking for a better life for their children. Often, the officers remember coming to this country themselves either as children or even as adults. It is inspiring to be able to help these officers connect to their own roots and to see them in the process of making their family’s own “American Dream.”

So far, the assignment has been very successful. Last year students interviewed Mexican landscapers, Korean nail salon employees, police officers from the Caribbean and one particularly ambitious student went to a local home improvement store and tried to pick up a day laborer to interview. While effort (predictably) failed and the man all but fled on foot, the student got a firsthand look at the fear that immigrants, especially undocumented ones feel. Even though NYPD does not enforce federal immigration laws and only reports immigration violations when they are discovered in connection with other criminal activity, the man in the parking lot did not know any of that and saw the well-meaning officer as a threat. The young officer told the class the next week, with slightly hurt feelings, because the man was too afraid to speak to him, even though he was out of uniform and doing it for a class.

So what do I mean when I say “don’t write like a cop?” Besides getting a rise out of the students, it is to get them thinking about different types of writing. Of course, all officers do not write the same. Some are tremendously gifted creative writers. One of my students this semester is a published poet while others write in terse, but clear prose that’s more appropriate for police reports than for a social science class. It is not that this style of writing is “wrong,” it is well-suited to the demands of their careers. However, in order to capture the immigrant’s humanity and convey their difficulties, hopes and dreams a different approach is needed. So once again this semester, twenty of New York’s finest will be asking questions of NYC immigrants not about crime but instead about what is was like coming to America and what the American dream means to them.

[1] Joe Friday of Dragnet never said exactly “Just the facts ma’am.”

Don’t Mistake Exhaustion for Apathy

In a previous post Luke asked the important question “where are the students?” regarding why there is not popular outrage at tuition hikes following Boone who wondered why students are not demanding a better, cheaper alternative to the expensive and uninspiring Blackboard software that students are forced to pay for and professors are pressed to use.  I was disappointed to see that no one in the comments mentioned what makes CUNY students different than those at other universities and why it actually makes perfect sense that they are not occupying buildings in light of the constant tuition increases as well as reductions in services and course offerings that are happening across the City University system, let alone taking an interest in what information technology platforms the university is using. In fact, I imagine most students have no idea that alternatives to Blackboard even exist. What they do know is that they like having their readings easily accessible online rather than going to the library, making photocopies or buying a textbook.

345/365 touch-up
Until recently, this is what “blackboard” meant to me…

Creative Commons License photo credit: kharied

I was slow to put mine up this semester and was surprised to see emails from students demanding it be put up. “Why? I emailed you the readings…” I thought to myself. There is a more important issue here though than simply student apathy whether it is economic and political or related to their lack of preference for open source software. It is more about class and race than anything else. I don’t want to come off as dismissive. Educational technology is important, the tuition hikes are out of control and I too want students taking action and demanding better. I will offer a possible explanation as to why they are not using an anthropology class I taught last semester as an example:

Creative Commons License photo credit: emokr

The class filters slowly into the stuffy, windowless room at John Jay. “Why is it always so hot in here?” I think to myself. There are 36 students registered for my class and to my pleasure/exhaustion  everyone’s attendance is great. An African American women in her early thirties rushes in comes in, flustered. A shy little boy peeks from behind her leg.  The baby-sitter has cancelled and she doesn’t know what to do and asks if her child can sit in on the class. I think to myself that surely there is a university protocol concerning this, but I do not know it. The little boy quietly sits in the back row, next to his mother playing with a cell phone and I begin teaching. In short, there are virtually no “traditional” students to be found. There are, however, many single mothers who have to miss class when the baby sitter cancels or when the child gets sick. Everyone in this room works, and they work harder than me their professor. I always say that CUNY students are special. Many of them have hard lives, in this particular class about 10% of the students are white and most of their parents never went to college. They range in age from scarcely 18 to 58, many were born outside of the country and most of their parents never went to college.   There is one white male in the room besides myself and he is a middle-aged former nurse who wants to go back to school to become a substance abuse counselor.  For many, English is not their mother-tongue.

There are two young Latinos in the class who work as security guards. One works overnight shifts at a factory and then comes directly to my class. Sometimes he falls asleep.  The other works at a hospital and when his “relief” does not show up he is not allowed to leave. He does not have a choice, his is the only income his mother, sister and her child have. They all live together in a small apartment. These students are just scraping by. They work hard, and face significant challenges. For them, life gets in the way of the possibilities of campus activism. Even the textbook (which I specifically chose because it was older and more affordable) proved too expensive for a couple students who privately, and with a great deal of embarrassment, told me that they couldn’t pay for it. In the end, I loaned them my copy and then felt guilty how thankful they were saving them $30.

I have to admit, I fell in love with these students. I marveled at their hardships and how they were pulling themselves up from poverty and getting an education. I was proud of them, impressed that they found time to take summer internships and how serious they were to graduate.  No one in my family has graduated college and will be the first (and probably last for a long time) to get a PhD. The CUNY system is one of the few places where I believe the American Dream, at least for the time being, is alive and well. Where students from the working class, and especially minority students can access an affordable, quality education.  The fact is, even in light of recent cuts, CUNY still costs far less than most universities.

The CUNY legacy is one of providing education to students who could not otherwise attain it. Indeed, it was free of charge until 1975, a fact I proudly tell my students to let them know that they are at a university with a history they should be proud of.  In 1920 80% of the students at City College and 90% of those at Hunter College were Jewish (Steinberg 1989:137), at a time when Columbia University was actively restricting Jewish enrollment using a redesigned application which asked for religion, father’s name and birthplace, a photo and a personal interview (Synott 1986: 239-240 cited in Sacks 1998: 82).

Today, it is a different set of students who need the boost to middle class life that an education can provide. The students I teach at John Jay as well as those in many of the other CUNY schools, especially at the community colleges face challenges unknown to middle and upper class white students attending more traditional colleges across the country. For the majority of the students I know, there are no dorms, frat parties—no campus life at all aside from the library and cafeteria. One simply goes to class and then rushes to work or back home to their children. This is a far cry from better funded, whiter, more upper-class colleges where the feel is more “low-stakes”  and about self-discovery. While for many CUNY students, especially in the community colleges, what is at stake is the well-being of their families and there is no room for error.

A comparison of CUNY students to those in Europe protesting is not fair. First, European students are much less likely to work during school than their American counterparts. Secondly, The Spanish protests were about far more than education costs, they were about the very fabric of society and the lack of opportunities for young people, who are now unemployed and living with their parents at record numbers even into their early thirties. Spain has the highest rate of youth unemployment in the European Union (43%) and this generation is called “ni-ni” –they neither work nor go to school. The situation is bad in America, but not comparable to what is happening in Spain, Italy and Portugal to name a few. The Spanish unemployed youth do not even have the opportunity to be overburdened by their jobs, as they cannot find any.

These economic and time constraints place significant limits on the sorts of activism many students can engage in. In fact, in class discussions, many students expressed serious frustration with recent tuition hikes of 15% in 2009 and 7% this year, but those students who are hurt the most by these hikes are also the ones who are working multiple jobs and supporting other family members. I don’t want to go quite so far as to say that activism is a privilege of the middle and upper classes, but I will say that most of the students I know cannot take the risk of getting arrested to protest a tuition increase of a few hundred dollars, nor can they get the time off from their jobs or hire a baby sitter to watch the kids while they march in the streets, let alone to pay lawyer’s fees should they be arrested—a much more common trend in the post 9-11 years. New York City has become a much less welcoming place to protest. I remember 1997 and 1998 marches and they had a different character to them with more arrests, more barricades and more pepper spray.

Police Lines
Creative Commons License photo credit: Holster®

The lack of militancy of these students is not surprising.  I want to see them marching in the streets demanding that education be a priority, demanding that CUNY continue being a place working class and minority students can get an affordable, quality education. I want students to take ownership and care about every detail of the university, but I do not think many have the time to do this. So while the students should be protesting tuition hikes, maybe the professors should be the ones protesting Blackboard software and the costs in terms of dollars, as well as lack of portability and doing a better job inspiring our students to take demand better from the state and the university.  So I will ask: Where are the professors?