ESL and the Right to Health

Last night, I taught English class for the first time. When I was in high school, I had tutored math and science, but this is a completely different ball game. I have to write my own lesson plans rather than rely on the homework assigned by another person and there’s no textbook to flip through if I forget something (or don’t know how to explain something). My students are (probably) all older than me (a few of them didn’t make it to class yesterday, and one man seems to be about my age), and some of them have been in this country longer than I’ve been alive. But they are all driven by a ferocious desire to learn—every single one thanked me for teaching after class had finished. I didn’t know how to respond.

One of my students is a woman who’s been here for over twenty years, and yet has learned very little English. After class, she pulled me aside. “My husband speaks English very well,” she told me in Spanish. “He used to work, but now…” she trailed off, gesticulating to a man seated in a wheelchair in the other room. “I used to just stay around the house, but now I have to learn English.”

Her husband appears to be quadriplegic. In class, as we took turns telling brief life stories to practice different tenses, he told us “I used to be a painter. One day I will try to walk again. Right now, I am sitting in this chair.” Simple sentences, and perhaps mis-ordered, but powerful nonetheless. I remember feeling infinitely grateful that he had revealed this truth to me in the context of an English class, where I could praise his use of three tenses and move on to the next person, rather than grapple with his thoughts and feelings about his disability and my fundamental incomprehension as an able-bodied person.

I don’t know what kind of healthcare this man and his wife have access to. Obviously they have something, because this man was conversing with us despite having severed his spinal cord. But his wheelchair is manual, not electric, which means he is incapable of going anywhere unless someone pushes him. He will require extensive (and in this country, expensive) rehabilitation if he is ever to walk again. His health has powerful ramifications for that of his family as well. His wife is learning English in order to find  work to cope economically with the loss of the primary household provider and any bills incurred by her husband’s accident. An event like this could drive a family into poverty even without a private, free-market healthcare system (never mind the impact of poor English comprehension and usage in either the healthcare or work setting). Viewing health as human right demands that we provide care for this man and his family, regardless of their ability to pay, regardless of how long his rehabilitation takes, and regardless of their status in this country (I don’t know if they are here legally or not).

But this case also demands that we set parameters for rehabilitation of disabled patients. Does health care as a human right require that we provide basic treatment so that he is “functional” in a wheelchair, or does it require the most advanced treatment we can provide, holding his goal—to someday walk again—as our mandated end of treatment? Part of me says that providing the best possible treatment isn’t feasible. But part of me says that to do anything other than that would automatically set up divisions between people, and force us to value one disabled person over another so as to decide who gets cutting edge treatment. And that fundamentally undermines any claims of the intrinsic human rights-ness of health.

 

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Thoughts on Paul Farmer

Disclaimer: I just submitted this as my weekly post to the discussion board a global health ethics class that I’m taking at Duke University…so forgive me if you’ve already seen it there. This post is a follow-up to the previous (and much more coherent) piece about reading Partner to the Poor: A Paul Farmer Reader, which I do highly recommend. I’d love to hear your thoughts about these issues, or any others (including whether you liked the book!!).

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Paul Farmer is very clear about where he stands: health is a human right, and both physicians and states are morally obligated to do all within their power to combat illness and disease, even if it will bankrupt them in the process (although he argues that it will not). However, some would argue that Farmer is overstepping the boundaries of what constitutes ethical behavior by pushing us from “treating others as we would want to be treated” to “treating others as they want to be treated”—that is, a shift from merely leaving others to their own affairs to actively getting involved to do something for/with others. Part of the danger then with Farmer’s argument is how far do we take this—was the 2003 invasion of Iraq ethical because we were ostensibly “protecting the rights of citizens”? Is there an ethical obligation to get involved militarily in North Korea? Does this include ignoring national sovereignty in the interest of best serving the people of a country (who constitutes “the people”?)? Is there a point where this type of interventionism becomes paternalistic and just a 21st century version of “the White Man’s Burden”?

Furthermore, Farmer is highly critical of medical ethics boards, which he argues overlook basic moral tenets. The examples he cites certainly make this seem the case. But if so, how did/do we allow researchers to become so removed from the humanity of their “guinea pigs” that these types of things happen? I would argue that the proverbial “Ivory Tower” is not filled with sociopaths, so then how do we explain the disconnect? Is it the structure of grant proposals and journal articles—e.g. the conventional formality of such writings force a dehumanization of the subject in order to facilitate a sufficiently scholarly write-up and discussion? But more importantly, once we identify the problematic structures that convert academia into a “human rights violator” (defining “human rights” broadly, as Farmer does) how do we address them in a way that keeps academia effective (I struggle to say impartial here because I personally have yet to see a truly impartial piece of scholarship)?

 

High-ho, high-ho, it’s off to circumcision camp we go….

We drove out to Ezakheni today to help prepare for a massive, district-wide male circumcision campaign. Although the jury is still out on the degree to which male circumcision reduces the risk of HIV infection (with some folks saying it doesn’t help at all and that the correlation noticed is due to other factors like genital ulcers or high-risk behavior), the South African government (traditional as well as modern) has whole-heartedly jumped onto the male circumcision bandwagon.

In Xhosa and Zulu tradition, circumcision is but one part of a coming-of-age ritual for young men (due to a high post-circumcision rate, the Zulu monarchy had suspended the circumcision part of the rite for years and has only recently revived it in light of the HIV/AIDS epidemic sweeping the nation). Young men go off to the mountains in groups with a sangoma (traditional healer) to be initiated into the ways of manhood. Part of this includes circumcision and the burial of the foreskin (and thus, of childhood). Since circumcisions have picked up in recent years, so has the infection rate. This winter alone, 40 boys have already died from infections acquired because of circumcisions. So in an effort to prevent the deaths and disfiguring infections, the government has mandated that the public hospitals run these circumcision camps.

In a nod to the tradition of going away to the mountains for the whole process, we set up the clinic in an old technical college in Ezakheni instead of running the campaign out of the hospital which would have been considerably easier (it was supposed to be in a more remote area but the location wouldn’t have been feasible for the medical staff). Some 250 adolescent boys will come through there this weekend, so there were a lot of preparations to be made. Although I definitely think that using the time to teach about HIV infection and safe sex would be more helpful (isn’t manhood about accepting responsibility for your actions and making decisions that will benefit you and your loved ones?), this does seem to be a step in the right direction. I disagree with the whole circumcision thing (genital mutilation is genital mutilation whether practiced on boys or girls), but if it’s going to be done, better in a sanitary setting where there are doctors performing the procedures than out in the bush. At the end of the day, it’s about saving lives, right?

Crepes and Colposcopies

So I didn’t end up making it to Lord Vishnu Temple on Monday because we had dinner with our lovely dietitians, Cristen and Caryn, along with some other medical folk over at Cristen’s place in Winterton (a little town out in the Berg about 20 minutes from where we spent the weekend). Cristen made pancakes for dinner (crepes, to all my American friends…South Africans have “flapjacks” for breakfast) and we all pigged out. Delicious.

Then it was back to Ladysmith for some more work. Today I wandered up to theatre to watch a colposcopy (basically just the removal of pre-cancerous tissue in the cervix). This procedure is the follow-up to an abnormal Pap smear, assuming the results suggest pre-cancerous or cancerous cells. Normally this doesn’t happen until the patient is older, in her fifties or above. But if there’s one thing I’ve learned since being in South Africa, it’s that HIV complicates everything. Here, a number of our cervical cancer patients are quite young–in their twenties and thirties. This is because someone who’s HIV positive is less able to mount an effective immune response to an HPV (Human papillomavirus)  infection.

Normally, HPV lies dormant amongst the cervical cells for years before slowly converting normal cells to cancerous ones (this is why the HPV vaccine is so important!!*). Certain strains of HPV also cause genital warts, and the high incidence of those amongst the patients I’ve seen suggests that the immune response to those strains isn’t so good either (don’t worry, the vaccine protects from those too). Normally, the body does a pretty good job fighting this stuff and can even rid the cervix of the pre-cancerous cells by itself, which is why usually women with abnormal Pap smears are told to simply repeat the exam in six months. But if you’re HIV+, especially if you’re CD4 count is low, you can’t fight off the pre-cancerous cells so they have to be removed before they become malignant. Thus…the colposcopy.

I couldn’t see too much during the procedure, but the doctors were kind enough to let me peek in through the machine from time to time. I think I was able to tell which parts of the cervix looked abnormal…

Then it was off to the monthly district morbidity and mortality meeting. Apparently our stats look better than in previous months and improvements have been made since the last quarterly meeting, so it was mostly good news. And then, towards the end of the meeting, we suddenly shifted gears and began to talk about CTOP. No, not the UNC first-year orientation program. In this context, CTOP refers to abortion. Although abortion is legal in South Africa, there are few providers (especially in KZN province). The clinic sisters told us that they were being flooded by women looking for abortion providers and that they had no one to refer these patients to. Many of these women later end up in our Casualty ward as a result of a botched back alley abortion, or an incomplete medical one started by a doctor who was unwilling to do the follow-up work. There has been talk of building an abortion clinic here for two years and it looks like all this work may finally come to fruition, “may” being the key word. There has been a big debate (which continued even today) about the location of the clinic that had basically all the same arguments as one might here in the States. Just a little kick in the pants for me in case I’ve been getting too comfortable in maternity…

*NOTE: HPV has also been implicated in certain anal and penile cancers so guys should really think about the vaccine too, even though it’s only being marketed for girls at the moment. That being said, it’s not even offered here in South Africa’s state hospitals because the government can’t afford to get it for folks. Definitely felt that invisible knapsack of privilege again when I learned that, since I’m one of the lucky ones that has been vaccinated….

Fish Out of Water in the Maternity Ward

Today was our first day in the hospital. We met with Cristin the dietitian, who is our contact here. Although she wasn’t expecting us until Wednesday, she was super accommodating and took time out to tour us around the hospital and introduce us to various doctors and nurses. She then sent me to do rounds in the paediatrics ward with her colleague Caryn.

Caryn was also absolutely wonderful. She’s in the middle of her community service year (after completing medical school, all South African health professionals must perform a year of community service in one of the state hospitals) and wants to stay on for another few years. We went through the ward and spoke with all the mothers about their children’s nutrition. Most of the patients were infants, but there was one almost-four-year-old. All of the children were malnourished, but some were much worse off than others. One of the babies was only at about half of her proper weight. I just wanted to hold and play with them, but before I knew it we were off to maternity.

Ward 9 is the maternity ward here, and it is busy. First I joined the doctors on their rounds. The women who were in the ward overnight were those that had been admitted the day before because they were starting to go into labor (or “labour,” since we’re in South Africa). The group of doctors and interns went through palpating abdomens and performing pelvic exams. Two women were given a stack of paperwork to fill out in preparation for their C-sections (the hospital hasn’t been computerized so everything is on paper).

From there two of the doctors and I moved into admissions, where a long line of patients was waiting. The admissions room had one desk which the doctors shared and three beds for exams. Some of the women who came in were given pelvic exams to determine how close to term they were and whether or not they were in labor. Very few ultrasounds are done here–gestation is determined the old-fashioned way, by the size of the uterus. The doctors here have done this long enough to know how large the fetus is by feel, but they explained that one can use a tape measure as well (the measurement in centimeters of the external distance from the fundus to the pubic symphysis is equivalent to the number of weeks of gestation towards the end of the pregnancy, assuming the fetus is developing correctly). Palpation is also used to determine the positioning of the fetus. Generally, ultrasounds are reserved for abnormal cases, like when the fetal heartbeat is absent or when the weeks of gestation as determined by palpation don’t match up with the weeks of gestation as determined by dates (counting from the woman’s last period).

The doctors totally expected me to jump in hands first and as soon as they realized I knew nothing, they set about remedying the situation. I’ve already learned how to decide if a woman is going into labor and been given lessons on how to draw blood and how to palpate a pregnant uterus (definitely don’t feel comfortable with the latter two yet). As much as I love that I’m being allowed to get involved right off the bat, I must admit I’m a little uncomfortable with it. This whole experience is giving me a ton of respect for the degree of patient involvement at Feminist. I’m not sure the women I’m being instructed over have any idea who I am, and they’re certainly not being asked if they’re ok with my presence (and incompetence). This is definitely sitting very uncomfortably with me.

Heart Transplants and Ostriches, oh my!

We’ve come to Doppio Zero, a local Italian restaurant, for some dinner. Of course, given that Doppio Zero has the only free wi-fi we’ve seen since being in the States, we’re all buried in our laptops, typing frantically. Kind of funny I suppose, but we’ve all got a lot to write about.

Today we visited the Heart Transplant Museum at the Groote Schuur Hospital in Cape Town. In 1967, Christiaan Neethling Barnard led a South African team in performing the world’s first heart transplant, beating out Americanscientists by a matter of days. Although some forty years have passed, today surgeons use the same procedure as Barnard (a procedure that Dr.’s Shumway and Lower had originally developed). The museum was fantastic, complete with life-sized silicon replicas of the surgical team at work (courtesy Madame Toussaudes), which you can actually see on the website. They were definitely a little creepy, particularly the model of Louis Washkansky (the first transplant recipient)  which stared straight at you when you rounded the corner into his room. Our guide admitted that she sometimes got a little spooked closing up the museum by herself at night, and I shuddered at the thought.

After the museum we headed out to the West Coast Ostrich Show Farm to learn about ostriches. A little random–but very cool. Our guide was very knowledgeable and before long we were joking about how easily an ostrich could disembowel us if it got angry. We were allowed to feed the ostriches and we’ve got some great pictures of us feeding (and trying to dodge) them. My favorite is probably the one of Kenneth in shock after one of the Kenyan ostriches got a little too aggressive going after the corn. Towards the end of the tour, the guide and another man collared an ostrich by the name of Michael Jackson and allowed us to climb on top of him. We all took pictures with Michael, who did his best to look dignified despite being mounted by a quick succession of six American tourists.

By the time we made it back to the hotel, we were all exhausted. It’s been a busy few days and we fly out to Durban tomorrow morning. Hopefully I’ll be able to get pictures up soon.

RE: “We Do Abortions Here”

Ever since Friday, when I started officially working in the clinic, I’ve been thinking of Sallie Tisdale’s essay “We Do Abortions Here: A Nurse’s Story.” (http://realweb.ifastnet.com/articles/weabort.html) I’d first read the essay years ago, when “abortion” was an amorphous term to me, a vague possibility for women in the most desperate of circumstances. At that time I could barely conceive of sex and pregnancy, much less termination.

I re-read it when I began applying for the position several months ago, trying to prepare myself for the things I might see and hear in the clinic, since I had had no prior experience with the procedures. I had a textbook understanding of abortion, obtained mostly through researching the debate and my work organizing campus Planned Parenthood events. I knew the difference between a D&C and a D&X, at least on paper, and I knew that Bush had outlawed intact D&E in the Partial Birth Abortion Act of 2003. In spite of this knowledge, I had no real tangible conception of abortion.

I finally returned to Sallie Tisdale’s essay last night, after ruminating on what I remembered it being about. This time her words jumped into strange, startling clarity. “How can you stand it?” they asked her, as they ask me. “What a strange job you have,” one client remarked as I held her hand and chatted with her before the procedure began. Tisdale remarks on the anger of the women she serves. In my case it is often the anger of the friends that accompany the younger clients, rather than the anger of the women themselves.

“I am learning to recognize the shadows that cross the faces of the woman I hold. While the doctor works between her spread legs, the paper drape hiding his intent expression, I stand beside the table. I hold the woman’s hands in mine, resting them just below her ribs. I watch her eyes, finger her necklace, stroke her hair. I ask about her job, her family; in a haze she answers me; we chatter, faces close, eyes meeting and sliding apart.

“I watch the shadows that creep up unnoticed and suddenly darken her face as she screws up her features and pushes a tear out each side to slide down her cheeks. I have learned to anticipate the quiver of chin, the rapid intake of breath and the surprising sobs that rise soon after the machine starts to drum. I know this is when the cramp deepens, and the tears are partly the tears that follow pain—the sharp, childish crying when one bumps one’s head on a cabinet door. But a well of woe seems to open beneath many women when they hear that thumping sound. The anticipation of the moment has finally come to fruit; the moment has arrived when the loss is no longer an imagined one. It has come true.”

Sometimes the women cry, sometimes they are simply silent. One, as the machine began to whir, said plaintively “Talk, just talk. I don’t care what about. Just please talk.” The women I have stood with do not cry, at least not during the procedure. They scrunch their faces up, crush my hand in theirs, curse enough to make a sailor blush. One remained perfectly composed throughout the procedure, and only once the doctor had left the room did she allow a single silent tear to course down her cheek. Her strength amazed me.

Once upon a time, I would have simply admired Dr. Tiller for his perseverance (this wasn’t the first shooting he had endured), but I would not—could not—have understood it. Now, after having heard the stories and seen the fear/pain/relief/confusion/sorrow/happiness in so many women’s eyes, now perhaps I can begin to comprehend.