Tuesday, May 27, 2008

Midwives reach out

This is a great little PSA for a better trained international community of midwives.
The problem, as I see it, is that we tend to train from one model (a western model) of care which fails to take into account the cultural needs and resources of a community. I think hand in hand with the medical training of midwives, we must do training's in critical risk assessment based on a community of cultural competent midwives. We have to start thinking about how culture effects medicine and inversely, how western medicine effects culture, if we want to have truly integrated approaches to treating women.

Monday, May 26, 2008

Abnormal agency




Twenty-four women sit cross-legged on straw mats that are laid out strategically to cover the dirt between two huts in Unyama, a camp for internally displaced persons in Northern Uganda. A plate of boiled yams is passed around and water is poured from a large gourd into tin cups. One of the women towards the back raises her hand and begins to speak. I cannot tell if she is young or old. Her voice is soft and we all lean in to hear her. She pauses between sentences so that the translator can speak into the recorder.
A woman came to me in the night. She was feeling strong labor pains. I stayed with her into the morning. Finally, she began to push. I leaned in close to her, placed my hands to catch, but instead of a baby… she pauses and glances around the circle, we are all silent in anticipation, imagining what could have come out in place of a baby…instead of a baby, a swarm of one thousand black flies flew out of her vagina into the hut in a thick cloud. Almost like smoke from a fire. After this there was no sign of a pregnancy. Nothing at all. Her belly became small and tight very quickly. We took her to a hospital and the ultrasound revealed nothing. It was as if it never happened. An American doctor for World Vision suggested we were crazy but I know what I saw. Tell me sisters. Tell me. Was this the Devil? Most women begin to nod their heads in agreement and one woman calls out “yes, yes, this is the work of the devil, I have seen something similar…”
Suddenly there is a rush to speak. Women begin rapidly telling tales of abnormal or ‘devil influenced’ births they have attended: a woman who gave birth to a large hairy eyeball, a child born with her foot attached to her head, and a baby born with a full set of teeth. Sitting in this circle I find myself wondering how narratives about the body and birth work to both create and heal the traumatized female body.

This particular incident was transcribed during a meeting of Traditional Birth Attendants, women trained by their mothers, sisters and aunties in the art of catching babies. None had been formally trained by Western standards, but all had attended hundreds of births and most were mothers as well. Supported by a grant from Mama Cash, an organization that allocates funds to bolster the position of women’s rights, I was one of two Americans, a midwife and a doula, working alongside Ugandan midwives with the intent to exchange practices, share techniques and understanding of the birthing body. I hold a Masters degree in Performance Studies, which framed my understanding of this circle of tales as a performance of it.

The ‘devil’ is one of multiple answers to the question of ‘what’ came out of this woman instead of a baby. The biomedical rationale for a swarm of flies disguised as a pregnancy could be that the laboring mother had a parasite. According to the American Journal of Infectious Disease ‘Gasterophilidae’ or ‘Stomach Botflies’ can produce a pregnancy like distension of the pelvis. Another biomedical explanation may be that, as the World Vision doctor suggested, the birth attendant was delusional and imagined the entire incident. The institution of medicine produces a certain story of the body, one that is skeptical of personal experience narratives. From the biocultural perspective however, the rationale will be as diffuse as the experiences of the women sitting in the circle. Religious belief systems, myths and ritual may be used to make sense of the world in ways that move beyond scientific explanation and offer points of entry into understandings of health. dimension of narrative and voice as intrinsic to women’s health care in particular.

In war torn Northern Uganda, the biomedical conditions of women’s reproductive health are mediated and created by the circumstances of cultural warfare. For twenty-years a group of rebel soldiers attempted to tear down the Ugandan government to replace it with one, it claimed, based on the Ten Commandments. In the name of those religious principles the ‘Lords Resistance Army’ kidnapped more than 20,000 children, who made up the bulk of their fighting army. Some academic attention has been paid to the stories of boy soldiers but fewer accounts have been published of what happened to the girls, although we know that rape and servitude - as well as murder - are part of the tale. Most of the women in Unyama are refugees who have escaped abduction by rebel soldiers and are now giving birth to their rapists babies.

Even in rural Uganda, birth is managed from a technocratic model. “Traditional” birth attendants are trained in practices that date back only as far as British colonization. The story of the cell is privileged over the story of the woman. In spaces such as Unyama, I posit that the biomedical explanation of an ailment is not always the most helpful. Knowing that the flies were a parasite might be useful in America where one has access to clean drinking water and hand sanitizer in order to change future outcomes. In Unyama, knowing the conditions of emergence does little to change the circumstances of transmission. It is not surprising that it is the abnormal birth stories that create the necessary conditions for narrative sharing among the group of women who are both refugees and birth attendants. The tales are bound to overarching themes of religious morals, sin and punishment; themes that are not unlike the conditions that produced the pregnancies themselves. These tales of the devil mirror cultural circumstances and can be useful biomedical tools towards understanding what women think about their own bodies, the babies that pass through them and how they care for one another. The vocalizing of the tales demonstrates a certain level of ownership and rationalization of the circumstances, making possible the potential for personal decisions and choices about bodies and babies, which may be inclusive of safer biomedical practice. The two models overlap and intermix, the story of the woman informs the management of the molecular tale.

In a medical context, interpretation of narrative is critical; the successful transmission of information becomes intrinsic to the care that a patient receives. A scientific explanation may have its place in the treatment of physical ailments- yet it does not address the integral nature of women’s understanding of her own experience and therefore her ability to heal or prevent future instances.

I am interested in intersection of these two tales of the body– the spaces between what a woman speaks and a doctor understands, what a human experiences and science explains. I am interested in exploring the multiple narratives or means of framing one story, and locating the cultural influences between these narratives that can lend agency to both medical practice and patient care. While science may offer some explanations for the social conditions, to privilege the biomedical tale of the body misses opportunities for understanding and thus changes of practice that might be accessed through cultural narrative. The spaces and gaps between the story that is narrated by a patient and the story that is actually heard and interpreted by a health care practitioner should be explored to determine impact on women’s bodies and agency.

Thursday, May 8, 2008

Personal Narrative as Medical History?




I am the daughter of a storyteller.
Personal narrative has been alive in my cell memory since I was born.
My research as of late has been on the medical history- this charting of abnormality we all fill out at the doctor, which helps them to pathologize and diagnose, yet misses most of our actual history of 'health'.

About two years ago I had Cellulitus (a bacterial skin infection) on my face.
I recently switched doctors and so I had my medical records shipped to me. In the ‘notes section’ of this chart, my Doctor had written:
Patient presents with swelling and rash on ears (and face). Bumpy and hot to the touch. Skin is swollen to capacity and has burst… oozing a sticky yellow fluid, between water and puss. Left ear grotesque. Diagnoses: Cellulitus. Treatment: Penicillin and Benadryl.

Aside from feeling slightly woozy from the description, I was intrigued. Here was a history of my body that somebody else had narrated, and I had never seen. Not only that, I remembered the experience completely differently. In my memory it was not my ears that mattered so much, but my eyes, mouth and cheeks: a parenthesis in the Doctors description, but the most painful for me. I remember that all I wanted to do was cry, but could not because my eyes were swollen shut. I remember my cheeks stung and dirt kept collecting on the moist (pussy) skin so I had to lay with a wet washcloth spread across my face to keep from further infection

As Foucault points out in ‘The Birth of the Clinic”, “I cannot be present to a temporality that exceeds my own capacity for self-reflection, and whatever story about myself I might have to give has to take this into consideration. It constitutes the way in which my story arrives belatedly, missing some of the beginnings and preconditions of the life it seeks to narrate”.

Interestingly, a year before I received these charts, I had a flare up of the exact same symptoms that landed me in a Brooklyn emergency room. When my medical history was taken, nobody asked if I had ever had the same thing happen before. I was diagnosed this time with an allergy to Penicillin, the very drug that was used to treat the initial condition. It is hard for me to narrate the significance of these events on my physical body, in part because it is impossible for me to understand them apart from the context in which they emerged. Swollen to the point of having no facial features, my body became unrecognizable to my ‘self’. In order to give an account of myself in a way that was meaningful to the Brooklyn ER Doctors, I needed to remove myself from the actual experience; citing exact moments of swelling and symptoms, and leaving out the rest of the story. Reflecting on this experience and flipping through the charts that documented my medical history I cannot understand them as ‘mine’ without attaching experience to them. In my present embodiment I carry a mark of those stories. I still have a scar on my left ear from the broken skin that the doctor described as the biggest he had ever seen. Yet if asked for proof, ultimately, it is the charts that become the ‘official’ history of my body and not the scar. The scar, however, carries a story, one that is more ‘mine’ than the chart.

In a medical history form there are a prescribed set of questions that are meant to engage and evoke answers that fit into a prescribed way of understanding the body and its past or present malfunctions. The chronological history of the ‘event’ of malfunctions as well as a number of vague lifestyle questions such as overall diet and exercise lead the practitioner to a fuzzy framework of understanding the body they are treating.

The Health Care Financing Administration (those who decide what medical procedures will or won’t be reimbursed) and American Medical Association require the history component of the examination to the following elements (commentary in italics is written in a guide for medical students by chairwoman Donna McCune ).
• Chief complaint (CC)
The CC states why the patient is in your office. It is a brief description of the reason for today's visit including symptoms, conditions, problems, diagnoses, physician-recommended return, or other explanation. It is usually stated in the patient's own words. This entry is an essential part of every chart note. There must be a reason the patient is sitting in the examination chair.”

• History of present illness (HPI)
The CC and the HPI have a similar connotation. The HPI is a chronological description of the present illness from the first sign or symptom or from the previous encounter to the present. It contains subjective symptoms not observable by another (e.g., pain and nausea) and objective symptoms that are observable (e.g., redness, swelling).

• Review of systems (ROS)
An ROS is a listing of any signs or symptoms the patient may be experiencing or has experienced organized by body system. The ROS is not a history. It is a review of systems directly related to the problem(s) identified in the HPI as well as any pertinent current medical problem(s). There are 14 possible systems: constitution (general health), integumentary, eyes, musculoskeletal, ears nose throat, neurological, cardiovascular, hematologic lymphatic, respiratory, allergic/immunologic, gastrointestinal, psychiatric, genitourinary, and endocrine

• Past personal, family, and/or social history (PFSH)
The PFSH has three parts:
Past personal (current medications, allergies, prior illnesses/injuries, operations/admissions) Family (members living, health status, hereditary conditions related to the present complaint or illness) and Social (marital status, employment, tobacco, alcohol, drug use).


The author of this guide may provide insight into why health histories of the last one hundred years are only concerned with moments of rupture. Unless there is scientific capital to be gained, liability says that it cannot be done.
This locks Doctors into a system from which they must obtain very specific information and ignore the information that doesn’t fit into the box of what insurance says is important. In relation to what she is suffering from, the patient becomes an external fact; the medical reading takes her into account only to place her in parentheses. This enables classificatory medicine to presuppose a certain configuration of disease. The above framework for taking a medical history is used by all Doctors who are members of the American Medical Association. It takes into account a certain history of the body and completely ignores or bypasses another, assuming that illness happens in a prescribed and methodological way. Arthur Kleinmen, in his preface to Patients and Healers in the Context of Culture (1980) offers, “Clinicians tend to be simplistic about clinical practice. Their tendency toward positivistic scientism and atheoretical pragmatism discourages attempts to understand illness and care as embedded in the social and cultural world. Their reliance on ‘common sense’ often masks ignorance of relevant behavioral and social science concepts that should be part of the foundation of clinical science and practice”. (7)

Just a whole slew of thoughts today....