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Preface

Between a Clinical and an Ethnographic Gaze

In the early 1990s I worked for the National AIDS Fund on assignment in the poorest city neighborhoods in New Jersey. My job was to walk street after street of public tenements and condemned buildings that sheltered people who were injecting heroin or smoking cocaine, looking for those living with HIV who could design peer interventions.

I found Leila recruiting for her storefront ministry in Newark. Before her Pentecostal conversion, she earned money for heroin through sex work and was infected with HIV. She also gave birth to ten children and had custody of her youngest child, a six-year-old boy with AIDS. In between clinic visits for her son, she ran her ministry’s residential drug program and preached on corners where there was heavy drug traffic. Through Leila I met her pastor and his wife, ex-addicted migrants from Puerto Rico who had converted to Pentecostalism at Victory Outreach Ministries and then opened a drug program of their own.

The program was something that Leila, her pastor, and his wife had created from the institutional models they knew—storefront churches. In a city with the nation’s highest HIV infection rates among women and children, within a state that served as world headquarters for many pharmaceutical and health insurance companies and that had the country’s wealthiest suburbs and poorest cities, there was little public investment in HIV prevention or addiction treatment. Leila worked sleeplessly to save the souls and lives around her.

After meeting Leila, I began to notice Pentecostal ministries in the low-income Latino and Black neighborhoods of every American inner city that I visited, including San Antonio, New York, Providence, Worchester, Chicago, Oakland, Hartford, and New Haven. Ex-addicts in these ministries held evangelist rallies in front of crack houses and shooting galleries,¹ performed youth theater in urban schools, and ran outreach programs in the prisons (Leland 2004). I asked myself if addiction ministries were a form of working-class, grassroots health activism.

My fascination with grassroots health activism led me to study medicine and anthropology in an MD-PhD program. In the early years of the HIV epidemic, anthropologists entered shooting galleries and crack houses to observe the social hierarchies of drugs and sex that fueled HIV transmission (Ratner 1992, Epele 2002) and the ways in which interlocking “syndemics” of substance abuse, violence, and HIV (Singer 1996) were killing an entire generation. I reasoned that if clinical medicine would take field research on the social causes of disease to the bedside—just as it takes research on the molecular causes of disease from the laboratory bench to the bedside—it could have an impact on health outcomes.

Five years later I was a medical student in an urban Connecticut hospital, admitting a nearly unconscious homeless man for abdominal pain. He had injected drugs for years and the staff called him a frequent flyer: a regular in the emergency room. His legs buckled under him, his belly poked through the folds of his hospital gown. After an ultrasound and an enema, his colon released twenty pounds of feces. As he cleared fecal toxins from his bloodstream he became more alert. The hospital staff could not have been less pleased. He demanded morphine for his pain, and when he did not get it, he grabbed a syringe and needle from his nurse and threatened to stick her with his HIV-positive blood.

The staff responded by dimming his lights, closing his door, and ignoring his calls for help on the intercom. They slipped in meal trays while he slept but did not linger to clear old dishes or to clean his bed. After two days of frantic intercom calls, the patient made good on a threat to smear feces on the walls of his room.

“He’s disgusting!” grumbled the most seasoned nurse. The other nurses and a resident physician nodded. I asked the resident what had caused the patient’s severe constipation, he told me noncompliance. Unaware that the patient had been on medication, I asked, “Noncompliance with what?” The resident snorted. “Noncompliance with our advice to stop using heroin because it paralyzes his intestines.”

I clenched my jaw. If only he could just stop.

Until then I had not realized that my interest in addicted people started in childhood. My mother was a single parent working full time, so I spent much of my time with my grandparents in Oakland, California. The first floor of their house was a haven of plastic-covered easy chairs, Motown records, televisions in every room—including my grandparents’ bedroom—and an enormous barbecue grill enshrined on the back porch. The second floor had three bedrooms that housed my mother, my brother, and myself along with a rotating collection of uncles in need of a place to stay.

My grandmother Mildred was the daughter of a successful Black female entrepreneur who opened her own beauty parlor in Oklahoma City in 1911. Mildred was a sharp dresser and an equally sharp money manager: in her mind, her investment funds neutralized her white supervisors’ assumptions of her inferiority. My grandfather Johnnie—whose father had been a railroad Pullman porter in Shawnee, Oklahoma—told stories about walking uphill both ways in the snow to attend segregated schools during the Great Depression.

Mildred and Johnnie were proud and upwardly mobile, but there was also shame and rage in the air. They moved West during World War II because my grandfather had heard that in the Port of Oakland, a Black man could own his own company. And eventually he did. As a child I rode with him to his construction jobs, sitting next to the toolbox in the back of his shiny green 1952 Chevy pickup. He kept its engine, by then three decades old, purring by his constant attention. Oakland was indeed a place where, unlike Oklahoma, some White people would hire Black contractors.

But there was a hitch. More than once I heard the story of my grandfather’s first bout of pneumonia, which he caught working in the rain from Christmas Eve until Christmas Day on the roof of a White family’s home. His workers refused to work in the storm, so he did the job by himself. The White family did not pay him, pointing out that he had promised to finish before the holidays. My grandfather had no recourse in the all-White courts. A string of other failed contracts followed. In the long run, his business was not solvent, but he refused to fold it. Mildred worked in the Oakland schools and, tight lipped, she paid the bills.

Johnnie brought his rage home. He demanded perfection from his sons at school and at home. They foundered under the racist gazes of their teachers, and when they could not deliver, Johnnie beat them. Perhaps as a result, three out of four of my uncles—Bubsie, Billy, and James—struggled with alcohol and drugs. James had left home at sixteen and was heard from once every few years, drunk and cursing at my grandfather. Billy quietly nursed forty-ounce cans in his room upstairs in my grandparents’ house, unable to hold a job or keep his driver’s license due to multiple DUI arrests.

The uncle that was most painful for me to watch was my uncle Bubsie. Bubsie had been a football star in high school, and he was an avid reader who cited the Bhagavad Gita and Abraham Maslow in the same breath. When I reached high school and my mother refused to teach me to drive, he showed up in my room dangling the key to his VW bug from his fingers, prepared to risk his transmission for my freedom. I did not know then that his escalating binges on marijuana and cocaine would precipitate psychotic episodes that left him wandering the streets, muttering to himself and dodging the cars that he thought were following him. Unable to maintain his apartment, he moved back in with my grandparents, but they would not keep him. They were afraid of his outbursts, one of which landed him in handcuffs after he bit off the earlobe of a passerby on Telegraph Avenue. Another attempt at independent living—made while he was still in the throes of cocaine and marijuana use—ended with half his face burned by the bottle of Draino he used to threaten his roommate. Eight years later, in a state mental hospital, Bubsie died of heart failure likely caused by his psychiatric medications.

The irony was that my uncles had come of age during the Civil Rights Movement and were taught to aim high. James joined the military, Bubsie worked toward an engineering degree before dropping out of college, and Billy held a journalism degree. But their thwarted aspirations and substance use formed a vicious circle—shattering my grandparents’ hopes for their sons. My grandmother blamed my grandfather for breaking their sons, and my grandfather blamed my grandmother for emasculating him by controlling their bank accounts. Their angry silence led them to divorce just before their fiftieth wedding anniversary.

Church had been the center of Mildred and Johnnie’s lives; they and many of their childhood friends from Oklahoma attended the Methodist church two blocks from our home. Mildred and the churchwomen planned fundraising fashion shows, and heard financial advisors for their investment club. Johnnie and his church brothers set off from church on Saturdays in pickup trucks to go catfishing at Clearlake, ninety miles north, bringing the catch back to church for fish fries. My brother and I went to Sunday school, and church pageants at Christmas and Easter were occasions for Mildred and my mother to sew me lace-collared dresses and to buy me matching gloves and handbags. When my uncles decompensated, Mildred and Johnnie went to the pastor’s house for counseling. Before their divorce, they went to the pastor in an attempt to stay together.

After their divorce, I alternated between going to the Methodist church with Johnnie, and to Mildred’s newly adopted Black Baptist church half a mile away. My mother, Jackie, was not churchgoing; she was turned off by authoritarian preachers. But as the only one of her siblings who came out of the Civil Rights era with good health and a job, she was a moral standard bearer in the family. She was the child who achieved “perfection.” She went to Stanford on a scholarship, one of three Black students to arrive in 1962. She traveled to Norway on an Eisenhower International Fellowship where she met my father then returned to America, where in two months she married and in three years divorced my father. My mother then earned a degree in social work. As a social worker, she was horrified by the racial patterns of foster care placement, which was often state-imposed on African American and Latina women living in poverty who tested positive for drugs. When I was in elementary school, my mother became the first Black Ph.D. student in U.C. Berkeley’s developmental psychology program. Her mission was to correct racial bias in theories of child attachment that led to harmful foster care placements. Unfortunately, she was in the same department with Arthur Jensen and other proponents of racial-genetic determinants of intelligence. She got her degree, but she also challenged the claims of key faculty members, who saw to it that she did not get a viable academic job. Shut out of a research career, my mother returned as a social worker to a child protective service department where county guidelines forced her to place children in foster care against her will and against her knowledge of child development.

As pressures mounted, my mother’s perfectionism became puritanical. Almost no processed sugar or caffeine passed her lips. She never used profanity, always kept our house meticulously clean, and monitored my every excursion. Later in life I realized that my grandmother’s aunts and cousins—recent arrivals to California from Texas and Arkansas who my mother avoided because they had “strange ways” (they would not dance or show their legs)—were Holiness Pentecostals. My mother had more in common with them than she would admit. She embodied the ascetic personal morality characteristic of African American Holiness Pentecostal movements (Sanders 1996).

My uncles must have resented her. Uncle Bubsie once showed up at our door intoxicated, cursing and banging on the door hard enough to break its hinges while I hid behind the couch. Uncle James only came by to see my grandparents when my mother was not there, detonating his own drunken explosions. By the time I reached Puerto Rican street ministries, much about the strict daily discipline of ministry routines and the chaos of family life that the routines were supposed to guard against seemed familiar. Bubsie’s death was followed by James’ death from cocaine-related kidney failure. Billy drifted in and out of unemployment, but after my grandfather died, he joined Alcoholics Anonymous and my grandmother’s church. He got credentialed and eventually taught English in the same middle school in which my grandmother had worked.

My family’s frustrated aspiration, tenuous class background, and ethnic marginality guided my ethnographic curiosities. Although I had to check my tendency to project my family’s concerns onto my island Puerto Rican informants, identifying with my informants might have enhanced my patience regarding our differences, as well as my interest in their self-image as members of families and communities rather than as deviants.² I noticed that my practice of inviting ex-cocaine and heroin users to my home was not matched my professional colleagues. As a public health researcher in Puerto Rico asked me in disbelief, “You mean, you let your daughter meet the addicts?”

Like most biomedical practitioners in Puerto Rico and the United States, I was taught the Biopsychosocial Model (Engel 1977) in medical school. In contrast to evangelists—who relate all forms of suffering to the state of one’s relationship with God—the Biopsychosocial Model defines three discrete levels of influence on the health of an organism: biological, psychological, and social. The clinical diagnosis of substance dependence links physiological symptoms (such as tolerance and withdrawal symptoms) and psychological symptoms (such as the compulsion to use drugs) with social symptoms (such as avoidance of important occupational or recreational activities due to substance use). George Engel intended to call attention to neglected social factors with his Biopsychosocial Model, but in practice physicians often consider biology to be primary: physiological changes effect psychological changes, which in turn influence social adaptation. For these physicians, biomedicine enhances social functioning by improving physical functioning; social problems are caused by physical infirmities.

Because ex-addicted evangelists think of volition not in terms of biological vulnerability but in terms of spiritual power, they reject the central criterion for the diagnosis of substance dependence as described in the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM): loss of control. The idea of loss of control, in the biomedical frame, implies that an individual no longer is able to choose whether to use substances in a logical manner—he is the victim of his pathophysiology, psychopathology, or genetic inheritance. Many addiction specialists believe that framing addiction as disease reduces stigma and helps patients to accept and treat their conditions (McLellan et al. 2000).

The diagnosis of substance dependence offered in the DSM is seamlessly biomedical. Making the diagnosis requires a clinician to check off three or more items from a list of seven symptoms that the patient reports having had in the previous twelve months (see Appendix I DSMIV-TR). But moving from diagnosis to treatment in a doctor’s office is not a straight path. Pharmacological treatments for narcotics dependence often yield suboptimal results and have side effects; and in the case of opioid maintenance for heroin dependence (such as the prescription drugs methadone and buprenorphine), they are so highly regulated that most physicians are not licensed to prescribe them (Greenfield 2005). Medical school and residency training in treating addiction is minimal. One study found that less than 1 percent of U.S. medical school curriculum hours are devoted to addictions (Miller et al. 2001), and only half of all U.S. residency programs offer any training in substance abuse intervention (Isaacson et al. 2000), despite the fact that substance abuse directly accounts for more than 10 percent of U.S. health expenditures (CASA 2009). As a result, many clinicians feel powerless when confronted with their most difficult patients: the addicted ones. Biomedical training does not provide clinicians with psychosocial tools; they resent their addicted patients as manipulators and, in turn, addicted patients suspect physicians’ malice (Merrill, Rhodes, Deyo et al. 2002).

This thinning of social and cultural understandings of patients is acute in psychiatry—the biomedical specialty charged with treating addiction. In its effort to standardize diagnosis and treatment through biological models, psychiatry largely has become biopsychiatry and the strength of its doctor-patient communication has atrophied. Academic psychiatrists—with notable exceptions (e.g., Kleinman 1988, Kleinman 2007, Galanter 2005, Lewis 2011, Fullilove 2013)—focus on the neuroscience of mental disease and remain silent on spirituality and social connection. Psychiatrists understand and diagnose patients on their own biomedical terms rather than the patients’ terms. Built on the authority of practitioners and the scientific expertise ensconced in pharmaceutical markets (Lakoff 2005, Martin 2006, Rose 2003, Healy 2006) that delimit pharmaceutical selves (Jenkins 2010, Martin 2006, Rose 2003, contemporary psychiatry does not recognize that many patients have their own theories of disorder and treatment. Neither does it recognize systemic ethnic and racial bias in health care (Roberts 2011, Metzl 2010), nor the criminalization of addiction through disproportionate drug-law enforcement in non-White neighborhoods (Alexander 2012). The outcome is that a great number of addicted people arrive at clinics desperate for help, but leave facilities alienated from their doctors.

Although biopsychiatry promises practitioners universal truths and power, its reductionism costs them; I repeatedly have seen that the patients who the hospital staff fear the most are the working-class Latino and black addicts.

This book represents my efforts to understand addiction from a vantage point as radically outside of biomedicine as I can imagine. Yet, in the end, I found commonalities between the biomedical and evangelical understandings of addiction, and recognized overlap in the practices of addicted people who move from biomedical to evangelical institutions and back again. Addiction ministries are autonomous from the clinic, but also are a reaction to the clinic. At times they are combined with biomedicine. Well-meaning people on both sides of the issue benefit from a nuanced understanding of the other position, and of the elements common to biomedicine and evangelism that ultimately move people beyond addiction. After all, addiction often leads to severe distress during which the meanings that people attach to their acts—and the openings that they find for hope and change—are matters of life or death.