This article was originally published on April 13, 2016 by The Influence.

Kahtia “acted out” from a young age. At least that’s what the counselors involved in her case said. The reality, Kahtia recounts, is that she wanted to get away from the horrific sexual abuse in her home. By age 12 she was in residence at a juvenile treatment institution. By age 13 she was tired of being locked up.

After running away she had a few good years, during which she was adopted by a New York City gang whose leader had heard impressive stories about “the girl who hides a razor blade in her mouth to protect herself.” Later on she contributed to the gang through some high-priced prostitution and exotic dancing at upscale clubs. “Then,” she explains, “I was dealing drugs and became my own best customer.” The high-end sex work descended to street work, and Kahtia spent the next 15 years or so in and out of prisons and jails.

By the time I met her in 2008 (I have come to know her as part of an ongoing project with formerly incarcerated Boston-area women) she was spending far more time in treatment programs than in jail. Over the years, Kahtia has been sent by the courts, social workers, child welfare workers and doctors to residential treatment both in and out of jail, to outpatient multi-service clinics, gender-sensitive therapeutic groups, methadone treatment and ubiquitous 12-step programs.

What Should “Alternatives to Incarceration” Mean?

As a national consensus seems to be building around the idea that people who use drugs problematically are mentally ill and need treatment rather than incarceration, Kahtia’s experiences shed needed light on the concept as well as the practicalities of the “alternatives to incarceration,” which are garnering more enthusiasm than critical examination around the country.

Conceptually, the term “alternatives to incarceration” takes for granted that we are talking about ways to handle criminals who otherwise would need to be incarcerated—that incarceration is a reasonable baseline against which to measure “alternatives.” In light of the over-representation of Americans of color and low-income Americans in jails and prisons, however, it’s necessary to be careful about any sort of presumption of correlation between criminality and incarceration. In fact, about a third of people locked up in the US are awaiting trial; that is, they have not been convicted of a crime. Another third are locked up because they violated the terms of probation or parole; that is, the “criminal” act was not sufficiently egregious to require imprisonment but a subsequent action—often simply not showing up for a meeting with a parole or probation officer, or failing to keep up restitution payments or money owed in court fees—was the reason for incarceration. And 97 percent of federal and state criminal prosecutions are resolved by plea bargain—often accepted by defendants out of fear that if they don’t accept the deal they will be locked up even longer—rather than by trial.

Logistically, most alternatives to incarceration involve various sorts of intensive monitoring. This includes electronic bracelets, probation, parole and drug courts. Kahtia, like many other women I know, explains that all of these are a “set up” to be sent to prison. The terms of the supervision tend to be so extensive and rigid that, in her experience, everyone is bound to violate the terms. In her case, her last incarceration—four years ago—was triggered by the parole violation of having a “dirty urine.” When she added up the jail time and the time she was on parole, the total came to more months than she would have served if she’d been sent to jail to begin with.

Criminalization and Medicalization: Two Sides of the Same Coin

For the past 40 years, the cultural logic behind the mass incarceration of drug users rested on framing drug use as a personal choice, with the implication that it is appropriate to punish drug users who could have “just said no” to drugs. A similar logic still lies behind nearly all treatment alternatives to incarceration.

The individualistic understanding of addiction that is the bedrock both of prisons and of most treatment programs has important consequences in terms of social policies. In both medical and correctional settings Kahtia has been told—repeatedly—that her problems are the result of the bad choices she has made: the wrong men, wrong friends, wrong ways of getting money and wrong drugs. Correctional staff and therapeutic staff alike have drilled her in the idea that her problem lies within herself, her flaws, her disease, her female propensity to be “too nice,” and her proclivity for “denial.” Neither while incarcerated nor in any treatment programs has she ever been told that her problems may be the consequence of the failure of the collective to address economic inequality, racism, or sexual violence.

Sociologist Peter Conrad explains that, “[S]ince the medical profession’s mandate to treat addiction is dependent on (and accomplished at the determination of) the state, medicine functions as a social control agent in the former’s behalf. The uneasy alliance between law-enforcement and medical systems has created a hybrid criminal-medical designation of addiction” (Conrad p. 144). For women like Kahtia medicalization and criminalization are two sides of the same coin. She has been treated by doctors and psychiatrists for the very same conditions (pain and fear) and with the same or similar psychotropic and pain medications for which she has been sent to prison.

The murky line between punishment and treatment has not been lost on some of the corporations involved in the prison industry. Correctional Healthcare Companies, for example, has expanded beyond providing medical services to prisons and now offers services for the “full spectrum” of “offenders” lives: “pre-custody, in custody, and post-custody,” a timeline that perhaps says more than the company intended about American understandings of criminality.

What Is Treatment?

Typically, treatment begins with a short (five- or seven-day) detox. Ideally, people are sent from detox to residential facilities. However, in Massachusetts, like in much of the country, that transition often does not happen because there are no appropriate long-term placements available. Kahtia has been through dozens, perhaps even hundreds, of detoxes. Francesca, a friend of Kahtia’s, describes detox as “spin dry”—people come in, dry out, and are spat out afterwards. Spinning dry is particularly problematic because tolerance for heroin or pain medication is lower right after detox, making post-detox a period of danger for overdosing.

While one might argue that this simply points to the need for more long-term residential facilities, it is far from clear that such facilities offer much of a solution. If residence is voluntary, many people will leave because like Kahtia, they have families whom they do not wish to abandon or because they are fed up with the many rules about making beds, eating times, dress codes, etc. that residential programs typically see as necessary to “recovery.” If residence is coerced, then we as a society are at risk of a mass return to the cuckoo’s nest.

Recently there has been more interest in opioid agonist therapies such as methadone and buprenorphine. To be clear, these drugs do not “cure” addiction but rather are used like insulin or other on-going treatments for chronic diseases. While many people find these therapies useful, others feel that they simply substitute one drug for another (Kahtia told me that she found detoxing from buprenorphine even worse than detoxing from heroin), put money into the coffers of pharmaceutical companies, and too easily are misused when people sell or trade their doses.

Kahtia currently is in an outpatient program that provides group and individual therapy, psychiatric medication and methadone. Unfortunately, the combination of psychiatric medication and methadone made her so groggy that the director of the day camp to which she sent her kids last summer reported her to child welfare services (DCF) for being on drugs. Eight months later her kids are still in foster care; in order to get them back Kahtia is required to attend a full-time program of therapy and classes.

While not all treatment programs prescribe psychotropic medication, virtually all incorporate—explicitly or implicitly—12-step ideology and practices. Treatment facilities tend to be plastered with 12-step slogans such as “Let Go and Let God” and “Cultivate an attitude of gratitude,” and formal AA/NA meetings typically are part of the treatment regime. With emphasis on admitting one’s powerlessness (Step One) and making moral inventories of one’s faults (Step Four), these programs do not seem to offer people like Kahtia a meaningful script for re-organizing their lives. Having been at the receiving end of physical, emotional and sexual abuse both as a child and as an adult, she already is quite familiar with her powerlessness. And having spent much of her life in correctional facilities, her faults have been inventoried more times than she cares to think about.

Most treatment programs in Massachusetts also include some sort of psychotherapy. Kahtia has been treated by multiple therapists in both conventional and gender-sensitive programs over the years. While Kahtia typically enjoys talking about her history and her problems, she is frustrated by the rapid turnover in therapists at community mental health centers, by the fact that therapy has been required by parole officer and caseworkers, and most of all by the fact that therapy addresses her attitude to life’s challenges but can’t address the challenges themselves.

But Does It Work?

Politicians, advocates and just plain folks tout treatment as if there is clear evidence that treatment for addiction works. Indeed, “work it til it works” is a popular 12-step slogan. But by the standards commonly accepted for medical and scientific research there simply is no substantial evidence that this is the case. Studies showing positive outcomes to treatment typically look only at participants who completed the program, do not track program participants for long enough time to establish meaningful rates of success, fail to control for confounding variables, or look at very small numbers of participants from the start. Indeed, a recent meta-analytic review of the effectiveness of continuing care for substance use disorders (the need for ongoing treatment is one of the few things that virtually everyone in the field seems to agree upon), the researchers concluded, “Limited by [the] small number of [methodologically sound] studies, analyses did not identify any significant moderators of overall effects.”

Studies of addiction treatment tend to focus on retention rate in programs rather than on how the program impacted participants after they finished. The notion of treatment being measured by sticking with the program rather than by actually being cured seems bizarre. In cancer treatment we wouldn’t consider long-term treatment to be good. Yet, in the world of addiction research we find studies like this one that conclude that “Consistent with a sustained benefit for 12-step exposure, abstinence patterns aligned much like attendance profiles.” Despite the researchers’ use of the word “benefit,” all that their study showed is that there is some correlation between attendance and abstinence. Their data do not show that one causes the other. (In other words, it could just as well be that people who are not using drugs—for whatever reason—are more likely to continue attending 12-step meetings.)

Every Statistics 101 student learns that correlation does not prove causation, that two phenomena can be related with one causing the other. Yet studies like this one on “engagement” in treatment seem to remember that wisdom only in the “Limitations” section at the end of the article.  After pages of numbers showing that people who remain engaged in treatment are also less likely to be arrested, the authors acknowledge that “clients with stronger motivation at entrance to treatment may have both higher engagement and better outcomes.”

Very few studies follow the people who have left the treatment program, though in many studies more than half of the initial participants have left before the end. And even the best studies, the ones that make efforts to follow-up with all participants, typically cannot find half or more of the participants thus have no idea what has happened to them or whether the half (or less) they have managed to find are in any way representative of the full participant cohort.

For example, an otherwise strong study that compared methadone with buprenorphine (Suboxone) looked at 1267 opioid-dependent individuals participating in nine opioid treatment programs between 2006 and 2009 and randomized to receive buprenorphine or methadone for 24 weeks. But perhaps the most important finding is that the treatment completion rate was 74 percent for methadone versus 46 percent for buprenorphine. The researchers have no idea what happened to the half of the participants who dropped out. In short, while the study ostensibly found better patient retention with methadone but lower continued use of illicit opioids with buprenorphine, it’s difficult to conclude anything meaningful about the efficacy of treatment.

Even the best studies, the ones that that make efforts to follow-up with everyone who started the study, typically limit the follow-up to three months, six months, or at the most a year or 18 months post-program. However, as in Kahtia’s case, it is common for people who use drugs to have periods in which they use heavily, periods in which they use occasionally, and periods in which they don’t use at all. And while I suspect it is likely that many forms of treatment do have a short-term positive impact on participants, without a double-blind random study in which some people are treated and some are not and then everyone is followed-up for a substantial period of time, we really cannot know which, if any, treatment modalities actually work.

The absence of evidence for the success of treatment programs is especially glaring when the treatment is coerced or carried out in a coercive situation. It may be tempting to believe that even if treatment doesn’t help everyone, at least it doesn’t hurt. Yet, as we’ve learned from past efforts to “cure” homosexuality, treatment that is ostensibly for the patient’s own good may be used to bring the “deviant” individual back into line when their ideas or behaviors challenge social hierarchies of race, gender, sexual orientation or class. Those of us old enough to remember Jack Nicholson’s performance in One Flew Over the Cuckoo’s Nest can attest to the reality that therapeutic interventions aimed at “getting inside” the patient’s head can carry heavy costs indeed.

A Real Alternative

As the treatment-industrial complex gathers steam, there is need for critical thinking regarding not only the effectiveness but also the goal of treatment. Is the goal necessarily abstinence (an ideology promoted by the 12-step movement), as opposed to temperance or moderate drug use? More broadly, is abstinence or even temperance really the ultimate aim, or is the true goal a life of purpose, meaning and dignity? In Kahtia’s case the absurdity is that she would now be considered a “success” by treatment researchers because she has not had a dirty urine in many months. But the reality of her life is that she spends all of her weekdays in various classes and groups, she is not able to work, she is always broke, and her kids are still in foster care with no set date for her getting them back. Is that a success story?

Last month President Obama gave a strong speech about drugs. Yet even this thoughtful man, a president who has demonstrated his ability to hold onto competing ideas and live with ambiguity, offered the same uncritical promotion of treatment that has started to replace the uncritical promotion of mass incarceration. There was, however, an intriguing kernel of insight in his allusion to his own drug use in his younger days and his implicit acknowledgment that not everyone who uses drugs becomes addicted. I would have liked him to examine his own experiences a bit more and move beyond his uncharacteristically superficial analysis that, “I was lucky because, for whatever reason, addiction didn’t get its claws into me.” Could it be that his strong political and social views and commitments—his deep belief that the world can be made better and that he can be part of that process—made drug use less appealing?

If so (and I think it’s pretty likely that this is so) then we should be talking about social factors in addition to medical ones.

If, as President Obama has articulated many times, reckless use of violence by the United States cannot cure the violence that plagues the Middle East, then surely he can recognize that uncritically escalating our use of medical treatment cannot cure the problem of America’s massive overuse of drugs. Just like we need to put more thought and resources into understanding why people become suicide-bombers and into preventing disaffected young people from joining terrorist organizations, we need to put more thought and resources into understanding why so many Americans feel the need to use large amounts of mood-altering and sense-numbing substances. At this point we barely know what prevention of problematic drug use would entail.


 

This post is part of a blog carnival. Mothers, activists, healthcare professionals and researchers around the world have come together to ask the UN Secretary General to recognize April 11 as the International Day for Maternal Health and Rights. Please join by using #IntlMHDay

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Maternal health and rights are inextricably connected.

Without rights to safety and bodily autonomy, women may be prevented from carrying and raising children whom they dearly wish to nurture.

Without laws guaranteeing women’s right to choose when or when not to be mothers, they may be forced to endure pregnancies that endanger their health and well-being.

Without rights to clean water and air, adequate nutrition and stable housing, women may enter pregnancy already in poor health. Women whose health is compromised are more likely to suffer miscarriages, complications during birth, low birth-weight babies, infections during the post-partum period, insufficient milk and heightened rates of maternal and child death.

Without rights to paid maternity leave women may not have the financial resources to properly nurse infants or allow their bodies to heal after childbirth. And without access to appropriate, respectful and high quality health care, mothers may become too weak, tired, discouraged or sick to advocate for their rights and for the rights of their children.

The U.S. Healthcare “Non”-system

Maternal health in the United States — to be blunt — is not good. The US ranks 61st in maternal health standards, by far the worst rank among all developed countries. And among 25 of the wealthiest capital cities surveyed around the world, Washington, D.C. has the highest infant mortality rate, with babies from the District’s poorest wards dying at much higher rates than the city’s already high average.

The United States lacks a system of universal health care access. Although the Affordable Care Act (Obamacare) has expanded Medicaid eligibility for women and men living in about half of the states, local governors and state legislatures in the other half of the country have refused federal money to expand Medicaid in their states. Especially in the states that did not expand Medicaid, women may find that they get healthcare coverage temporarily while they are pregnant. This means that women’s health may not be optimal going into the pregnancy; there may be delays in prenatal care because they cannot afford to pay for the doctor visit to “prove” pregnancy; or that their eligibility ends too soon after birth or miscarriage. This sort of policy conveys a clear message that women’s health is not important in and of itself, but only insofar as the woman’s body is a baby-carrier.

Kim (all names used in this post are pseudonyms), a young Illinois woman, worked hard to balance college and her job. Though she managed to support herself, she could not afford health insurance, “I also tried to apply to public aid for a medical card [Medicaid], but they were telling me I have to have a child. They said that’s what I need in order to get help through the system. They make me think that they’re stupid, because, I mean, you have people out here like me with no kids and trying to go to school and trying to do the right thing, and I think we should also be helped. I was like, ‘Child, are you serious?!’”

In quite a few states, the eligibility threshhold for Medicaid is more generous for children than for adults. In these states, babies and children may be are eligible for healthcare coverage even when their mothers are not.

Jamie, a married woman in her early thirties, was diagnosed with gestational diabetes during her first and only pregnancy. The Illinois doctor told her that gestational diabetes put her at risk of developing type 2 diabetes later on. Her son was born with special needs, so Jamie left her job to stay home and take care of him. She and her husband were able to arrange Medicaid coverage for their son, and her husband was covered through his job, but the household income was too high by a couple hundred dollars a month for Jamie to be eligible for Medicaid. However, their income was too low for them to afford to pay for her as a dependent on her husband’s insurance. Jamie did have a few good years during which she would get her blood sugar tested at free health fairs held at churches and parks. Today, she has full blown diabetes.

The absence of a comprehensive healthcare coverage system creates a dangerous roller coaster for women.

This often seems to happen in Mississippi, for Alisha’s tubes were tied shortly after she gave birth. The reason for this, Alisha explains, is that the doctor encouraged her to get her tubes tied while she was still entitled to Medicaid by virtue of the pregnancy. A few months later, when she began menstruating, she experienced profuse bleeding. By this time, however, her Medicaid eligibility was over and she was not able to afford a medical assessment or treatment. “It started with the heavy, heavy bleeding and the days lasted longer,” Alisa explains, “And then it started with it going longer and longer into periods being heavier and harder for me. Sometimes I just lie on the floor and push real hard until it’s time and then get up and get on the toilet and then the blood clot comes. So I have periods like that now.”

Mothering in the Shadow of the Correctional System 

The health challenges faced by low and moderate income American women are exacerbated when they are caught in the correctional system. The United States has the highest incarceration rate in the world – and the gap between U.S. rates and those of the next most incarcerating countries are even higher for women than for men.

At this time, more than one million women are under the control of the United States correctional system. Most of these women are mothers of minor children and the majority of these mothers lived with their children before entering jail or prison.

According to the Center for Investigative Reporting, doctors sterilized as many as 148 women inmates in California prisons during the five-year period from 2006 to 2010. Women can be shackled during labor or delivery in most U.S. states. Incarcerated women struggle to obtain routine prenatal services, and the majority of newborns are separated from their incarcerated mothers immediately following birth.

Kristin from Massachusetts went to prison for the first and only time in her life immediately after giving birth to her second child. (The state kindly allowed her to wait to start her sentence until the baby was born.) At her request, her married brother and his wife took custody of her eight year old son and her newborn baby. Shortly afterwards, the brother and his wife found it difficult to cope with behavioral problems the older boy began to exhibit when his mother was taken away. At Kristin’s initiative, the department of Social Service (DSS) placed him with foster parents who seemed well able to care for the boy. A year later her son was placed with a single man in his forties who has asked to adopt the boy. Kristin is suspicious of his motives in wanting to adopt a ten year old with special needs and cannot understand why the Court feels that he is a preferable parent to her – even after she finished serving her sentence for a non-violent crime. There is no record, evidence or even accusation that she ever abused or neglected her children, and the boy desperately wants to come home with his mother.

With all of this going on, Kristin found out that she was pregnant. This was an unplanned pregnancy, for at 41 years of age she thought that her childbearing years were over.

By the time, Kristin was able to see a doctor, who showed her ultrasound images of the fetus, SHE felt that she could not have an abortion. The various lawyers and social workers involved in her custody cases are outraged at her decision to continue the pregnancy, seeing it as “irresponsible”. Caseworkers have threatened that by going through with this pregnancy rather than having an abortion, she will “lose any chance” of regaining custody of her other children.

Kristin’s loss is not a rare event. Across the country in Idaho, a friend watched Child Protective Services rip a baby from the arms of a woman who had just given birth. This woman’s child was taken from her because her drug use was seen as a danger to her children. “She asked for help,” her friend explains, “She failed her drug first test, but passed every one since. She is clean and committed to staying that way.” To make matters worse, CPS deemed the woman’s family members as unacceptable to take the child because they do not live in the same state. She has no money for a decent attorney and is looking at a hard road ahead. “Today I will watch them rip her three year old son from her arms too,” her friend says, “The baby was born with no drugs in the system. A perfect healthy 7 pound 3 ounces bundle of love. I’m sad and mad today.”

I share both the sadness and the anger. If there were any evidence that removing children from mothers like Kristin actually benefited children or mothers, I might feel differently. But children put into state foster care systems tend not to do well: they typically move from placement to placement, each time switching schools, doctors and caregivers. They are more likely than other American children to be overmedicated with cocktails of psychotropic prescription medication. And while some mothers may respond by trying as hard as they can to stay off drugs and to jump through every hoop demanded by every caseworker and judge involved in the case, some mothers become so despondent that, as one mother who lost her children told me, “After that happened I just gave up. When I had my kids, I admit, I sometimes used [drugs] but I always kept it under control – just small amounts on a Friday night, never in front of them, never got so high that I didn’t take care of them. But once they were gone I was off and running. There was no reason to try [to refrain from drug use] anymore. I stopped taking care of myself. I never cried so much in my life.”

Concluding Remarks

While the brief stories presented in this post have to do with women whose mothering experiences are particularly harsh, once we understand the political, legal and economic contexts of mothering in the United States, we understand that these personal experiences are shaped by the same social forces that shape maternal health for all women.

Around the world maternal health is constrained and encouraged by both formal and informal social institutions. In the United States, mothering increasingly has become a matter of legislative policy and judicial control. The lack of universal healthcare coverage, narrowly limited coverage for pregnant women, abortion restrictions, mass incarceration, prosecution of women for prenatal harm, removal of children from mothers who use drugs, welfare (TANF) limitations on childbearing, and the authority of family courts in child custody decisions are manifestations of a broad cultural consensus that the State has legitimate powers to decide what constitutes maternal health, who is entitled to health-enhancing conditions and services, and who counts as a good enough mother.

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Get Involved!

Forward this post to everyone you know.

Click here to learn more about how to get involved in the movement to urge the UN to declare April 11 as International Day for Maternal Health and Rights.

If you live in Massachusetts, let your legislators know that you SUPPORT HB 1382: An Act to Provide Community-based Sentencing Alternatives to for Primary Caregivers of Dependent Children Convicted of Non-violent Offenses. If you live in other states or countries, find out about — or initiate — similar legislative efforts.

Click here to learn about or to donate to Families for Justice and Healing.

 

I thank Terri Sterling, Amy Agigian, Maureen Norton-Hawk and Cortney Holmes for suggestions, stories and support.

Background

I first met Carly back in 2008 when, together with my colleague Maureen Norton-Hawk, I launched a long-term project following the life experiences of criminalized women. Younger than most of the women we were meeting at homeless shelters and women’s centers around Boston, Carly recently had been released from prison on a drug dealing charge. This was her first and only arrest and she herself had never used hard drugs. “I just smoke weed,” she told me, “because it helps me deal with my emotions from abuse.”

In the wake of childhood sexual abuse Carly had been removed from her family, spent a few good years in foster care and then three not-so-good years in a juvenile residential treatment center which she left the day she turned eighteen. “I regret it now,” Carly murmured, “but at the time I didn’t know what it is to be homeless.”

Two years at homeless shelters and on the streets, then a year in state prison followed by a return to the shelters left Carly with single-minded determination to get an apartment of her own. Life at Long Island Shelter (which has since been closed; see Outcast Island) helped her keep her eye on the prize and her name on every housing waiting list in the Boston area.

Carly’s First Apartment

In 2014 Carly finally got an apartment subsidized through a Section VIII government voucher provided by the non-profit agency Home Start. From the outside the building looked nice enough, but inside the stairwell was disintegrating. For $1150 / month, Carly moved into an apartment in which daily sweeping was insufficient to keep up with the mice droppings on the floors or the piles of sawdust created by some sort of wood-chomping insect. Each time I visited her, I could see the mold growing on more places in the walls. In some places, the mold actually seemed to be holding the wall up.

Complicating matters, the apartment was officially a one-bedroom but actually had another half bedroom. While for some people this would be a bonus, that was not the case for Carly. She explained, “I am too generous and can’t say no to people. I’ve been there and know what it’s like not to have a home. So I let people stay with me and then I get hurt.” For a while she let a man she knew stay in the half room. He “made trouble – brought drugs into the apartment,” and when she told him to leave, finally locking him out, he kicked the door down. “I’m lucky I wasn’t evicted.” Then she let a young woman she met at her church stay with her. “But she wasn’t a true Christian. She kept saying she’d help pay the bills but never did. Then she stole from me.” It took Carly almost six months to persuade the young woman to move out.

Yet with all of this going on, Carly found that having a home allowed her the stability to finish her GED, complete a training program to be a nurse’s aid, and look into possibilities for further education in nursing.

A Turn for the Worse

In December of 2015, I visited Carly at the maternity triage department of one of the local hospitals. Embarrassed, she told me that she had the misfortune to become pregnant the one time she “slipped” from her Christian vow of pre-marital chastity. When she first learned she was pregnant, Carly recalled, she did not want to go ahead with the pregnancy. Single, unemployed and living in a horrid apartment, she did not feel that she was in a position to raise a child. And, she explained, she was afraid that she would be shunned by her church for the unmarried pregnancy. But after a visit to the Boston Center for Pregnancy Choices where “a woman prayed and talked with me,” she decided to keep the baby.

A quick look at the organization’s website confirmed my suspicion that “Choices” may be a bit misleading. This organization does not perform or give referrals for abortions and strongly encourages women considering abortion to have an ultrasound “to determine viability” before going ahead with the abortion. Co-opting the rhetoric of choice, this organization – like many others of its kind – have been described as “the darlings of the pro-life movement,” dedicated to helping women “choose” to go on with pregnancies.

That day in December, like many other days throughout the late fall and early winter months, Carly was in the hospital while the doctors and nurses tried to get her asthma under control. The problem she explained, is that the asthma is triggered by the living conditions in her apartment. “The landlord is a slumlord,” Carly told me. “He will not fix anything.”

Complicating matters further, Carly’s blood pressure was high and the doctors were concerned that she may have pre-eclampsia, a potentially fatal condition for pregnant women. Carly had struggled with obesity for much of her life. In the year before becoming pregnant, she succeeded at losing a great deal of weight, but pregnant, she had become bigger than ever before.

Now eligible for a $1500 Section VIII voucher for a two bedroom apartment for the baby and herself, she could not find a place for the price allowed by Section VIII. And when she occasionally did spot a listing that fell within the allowed rent, she found that landlords often do not want Section VIII tenants. (SeePoor and Homeless Face Discrimination Under America’s Flawed Housing Voucher System“.)

Carly had made about a hundred calls both in Boston and in the furthest suburbs and hadn’t even made it to the stage of actually looking at an apartment. But she had not lost hope: “God doesn’t turn his back on me.” In the meantime, she continued commuting between the roach-haven and the hospital.

A New Home (For Now)

As it turned out, Carly was right to remain hopeful. In mid February she landed a lovely two bedroom apartment (albeit in the one neighborhood she wished to avoid – Dorchester, where she’d spent her drug dealing younger days).

This is how the apartment came about: Among the dozens of people with whom Carly networked in her apartment search she met a real estate agent who knew another agent, and the two of them made it their mission to find her a place. Since real estate agents often present barriers to apartment-seekers with Section VIII vouchers, this was quite exceptional.

“They really helped. They even are splitting the agent’s fee [one month’s rent].” For many Section VIII apartment-seekers the agent’s fee presents an insurmountable barrier to rental. This time, for reasons that we could not ascertain, Home Start was able to pay the fee for Carly. There was, however, one hitch. The monthly rent for the new apartment is $34 / month above the amount permitted by the voucher. Carly told Home Start that she’d pay the difference, but they told her that is not allowed. (For more on bureaucratic hurdles see  Failure by Design: Isabella’s Experiences with Social “Services”.)

The way it finally worked out is that the Boston Center for Pregnancy Choices offered to pay the difference for the first year (Carly does not know what will happen after that one year). She does not know why, but this plan was acceptable to all parties and she should be moving into her apartment next week.

For Carly, the lesson learned is that everything worked out “because I chose life. God is good.”

For me, the lesson isn’t so straightforward. Carly remains precariously housed in an apartment she may be able to keep for only one year. She still lives in one of the most violent neighborhoods in Boston, a neighborhood with particularly high rates of elevated lead levels and of asthma hospitalization rates for children under five. She will be raising a child by herself with no financial support other than welfare and food stamps. Her career momentum is on permanent hold. And, if past track records with similar “pregnancy choice” organizations hold true, Carly is not going to be able to count on her pregnancy-support network for substantial help with the daily grind of single-parenting.

For more on Carly click here and here

For more on housing see Health is Where the Home Is

This brief is offered as a contribution to current deliberations regarding Medicaid expansion and healthcare reform in the Idaho state legislature. Idaho, like many other “blue” states, did not accept the Affordable Care Act’s Medicaid expansion. As a consequence, Medicaid in Idaho, at this time, is only available to children, pregnant women, parents of children under the age of 19, disabled people and the elderly. Even within those categories not many meet the Idaho Medicaid criteria: A family of 4 must earn less than $650 / month to qualify.

Research Findings

In 2003 I conducted in-depth interviews with uninsured individuals and families in northern Idaho, south-central Illinois, Texas, Mississippi and Massachusetts. All 37 Idahoans – at the time – were in the work force, though many were struggling to maintain a level of health sufficient to allow them to continue working and caring for their families. As I wrote in Uninsured in America: Life and Death in the Land of Opportunity (University of California Press, 2015), I was struck by the “rugged Idahoans” who shared with me stories of swallowing handfuls of Ibuprofen each day in order to manage pain, using a pocketknife to shave off bone spurs from their feet, turning to friends who worked as aides at nursing homes for help bandaging wounds, and confronting medical bills of $100,000 or more in the wake of an accident or health crisis.

In 2015 I returned to Idaho and the other four states in which I had carried out research in 2003.

  • In Idaho I looked for 37 people and was able to re-interview 20 of the 37.
  • Five of the 37 were dead: all five had passed away prematurely (in their 40s, 50s or early 60s).

One of the dead, who passed away at the age of 58, had worked in the mines his entire life. He left behind a wife and children.

  • Five are now recipients of SSI or SSDI by virtue of having become too disabled to continue working.

Jane used to work at three jobs: cleaning houses, doing laundry in a nursing home, and waitressing at a café. “Eventually I cut back to just the café job because it was my social life,” she explained, “but finally I couldn’t do it anymore. I even kept working through double pneumonia because I had to pay my bills, but eventually I had to stop because of my legs – you see my feet and ankles hurt and then turned black.” When she was finally diagnosed with diabetes at a free clinic she was told that she most likely already had diabetes for seven to ten years, but it had never been diagnosed or controlled. The staff at the free clinic would give her free samples of her medication whenever they had it available, but that was not a consistent source. At age 57 Jane was granted Disability (SSDI), but then had to wait two more years to become eligible for Medicare. By 2015 was able to access care through Medicare and Medicaid, but it was too late. She now is housebound.

  • Five now receive insurance through their employers and none of the five are able to cover their dependents through their employers. According to the Idaho Department of Labor, approximately 95% of Idaho businesses employ less than 50 workers, exempting the businesses from the ACA mandate to provide health insurance.

Marla and Peter, parents of three young children, were uninsured when I met them in 2003 and remained uninsured until a year or so ago. This was challenging because Peter has a blood disorder, ulcerative colitis and glaucoma. Throughout his adult life he has worked steadily for a company that he likes and likes him, but does not provide health insurance. When their kids reached school age Marla took an office job, but it did not provide health insurance. To take care of her family’s health needs, Marla drove them to doctors all over the northern part of the state – sometimes putting hundreds of miles on the car. At each office she would accumulate a manageable bill that they tried to pay off over time. Typically, the doctor would not see them again until they fully paid the bill. Knowing they needed healthcare coverage, Marla began to work for another small business owner who agreed to pay half of their monthly health insurance premium. But the remaining half was so high that after it was deducted from her salary she ended up taking home about $5 / hour. In 2015 she moved to a job with somewhat better insurance. Her premium now is $250 / month, but the deductible is $3000 per person and there are hefty co-pays and co-insurance.

Al, a farmer in his early 60s, was embarrassed to admit to liking “Obamacare.” But he certainly has benefitted from expanded healthcare access. Diagnosed with lung cancer a number of years ago, he had not been able to obtain health insurance before the ACA because of his pre-existing condition. During those years, hospital bills were as high as $300,000 annually, leaving him in horrendous debt. Now he pays $12 / month for insurance through the Exchange and his doctor is satisfied that “there are no new tumors.”

  • Four had moved out of state, primarily in order to access healthcare in Washington or other states that have expanded Medicaid under the ACA. No one in Idaho was receiving Medicaid in 2015.

Chris and Brittany, a vivacious couple in their thirties, moved from Idaho to Washington several years ago after Chris injured his leg on a construction job and the workers compensation ran out before the surgeries he needed were completed. While Chris was out of work Brittany took a job at a restaurant in order to tide them over. With her salary they earned too much for Chris to qualify for Medicaid and get his leg fixed. But without that salary they couldn’t survive. Today, they both are healthy and productively employed in the state of Washington, where they are raising their children and waiting for the day when it will be possible for them to return home to Idaho.

 Policy Recommendations

  • Senate Bill No. 1204, an act that proposes expanding Medicaid eligibility to persons under age 65 whose modified adjusted gross income is one hundred thirty-three percent (133%) of the federal poverty level or below, is an excellent first step towards allowing all Idahoans access to appropriate healthcare services and thus the ability to maintain better health.
    • Those with incomes below 133% of the federal poverty level cannot afford to pay for appropriate medical services. As a consequence, their health deteriorates and/or they amass medical bills that eventually are passed on to the counties or the state.
    • Idaho hospitals and clinics, for the most part, already accept Medicaid payments. Thus, the infrastructure is in place and implementation of this expansion should not involve additional costs or bureaucratic complications.
  • The proposed Primary Care Access Program (PCAP) is unlikely to substantially improve access to healthcare for Idaho’s low income residents.
    • While primary care is the core of any healthcare system, the reality of today’s complex medical world is that primary care visits alone are rarely sufficient for diagnosing or treating serious illness. For primary care providers it is frustrating not to have the capacity to send patients for tests, procedures or specialist care. Patients will find themselves in the frightening position of being told by a primary care provider that they need certain treatments but that the primary care program does not cover them.
    • There is no evidence that access to primary care alone, without parallel access to other medical services, improves the health of populations.
    • According to the published description, “The program requires payment for services on a sliding scale fee, which encourages greater personal responsibility for the patient’s own health.” Given that this program is aimed at people with very low incomes, it is more likely that fees will function as deterrents to care rather than as encouragement of personal responsibility.
    • In my research in Idaho I have never spoken with a single individual who can afford healthcare but irresponsibly chooses not to seek it. The most common reasons for not seeking care are: lack of insurance, deductibles that are too high to meet, lack of transportation to healthcare centers, inability to take off time from work during clinic hours.
    • By limiting access to healthcare to specific health centers, this proposal fails to address the needs of many Idahoans who do not live near any of the specified health centers.

 

************************************

Acknowledgments: In addition to the uninsured and formerly uninsured individuals whom I interviewed, I spoke with Terri Sterling, ICAN; Charlotte Ash, Snake River Community Clinic; Ken Whitney, Jr., Mayor of Troy; Dr. Richard Thurston, St Maries Volunteer Clinic; Donald Duffy, Panhandle Health District; Moriah Nelson, Idaho Primary Care Association; Pam McBride, Clearwater Valley Hospital, Orofino; Ashley Piaskowski, Heritage Health, Coeur d’Alene; Dr. Ted Epperly, Idaho Healthcare Coalition and Family Medicine Residency of Idaho; Stephen Weeg, Board Chair, Idaho Health Insurance Exchange. I thank all of these people for taking the time to share their expertise with me. All opinions and errors are my own.

 

Contact Information: Susan Sered, PhD; Department of Sociology, Suffolk University; 73 Tremont Street, Boston MA 02108

Email: ssered@suffolk.edu

For more on this research see Health is Where the Home Is   Health Insurance Roulette: The House Always Wins   The State(s) of the Affordable Care Act     

Courtesy of Independent 1.23.16

The emergence and spread of the Zika virus is worrisome on many levels: the impact of global warming on the spread of infectious and mosquito-borne diseases (see “Getting Dumped On: Snowmaggedon, Women’s Health and Human Rights“); indiscriminate aerial spraying of poisonous chemicals — especially in poor regions — whether well-intended or not; and the reality that the poorest families in Brazil and other countries disproportionately bear the burdens of global warming and are disproportionately exposed  to Zika virus due to living in crowded neighborhoods, reliance on public water pumps that often are surrounded by pools of standing water, and lack of adequate public health resources.

A related set of worries are products of structural gender inequalities: prohibitions on abortion in countries and US states at the same time as women are being warned not to become pregnant because of the presence of the Zika virus (see “Pregnant Bodies as Public Property“); the power of ‘rape cultures’ in which women may not be able to control access to their own sexuality and fertility (see “Fighting Rape Culture: Real Tips“); and a problematic history of public responses to viruses (such as HIV-AIDS) that may be spread through sexual contact, especially when the virus initially impacts disenfranchised or stigmatized groups.

In addition to alarm regarding the vectors of spread of the virus, there is cause for concern for the well-being of families affected by Zika virus. Here in the United States, Zika virus-bearing mosquitoes have shown up in Florida and other southern US states where many people are unable to access appropriate medical care because their state governments have refused to expand Medicaid under the Affordable Care Act (see “The State(s) of the Affordable Care Act“). Shocked and saddened by the pictures we are seeing in the press of babies born with microcephaly, the US’s continued refusal to sign the International Convention on the Rights of Peoples with Disabilities (see “Disabled Rights“) seems particularly indefensible at this time.

I’d like to share and support this statement put out by the Women’s Global Network for Reproductive Rights:

A Feminist Approach in Responding to the Zika Virus

Posted on February 5, 2016

In light of the recent outbreak of the Zika virus in Latin America and the Caribbean, the Women’s Global Network for Reproductive Rights (WGNRR) and the Latin American and Caribbean Women’s Health Network (LACWHN) join the voices of our feminist and women’s rights partners[1] in admonishing regional governments’ limited public health advisories for women. In particular we denounce the calls of countries such as Colombia, Jamaica, Ecuador, and El Salvador, advising women to delay pregnancy until the virus is eradicated, and particularly the call of El Salvador for women to avoid becoming pregnant for a full two years.[2]

Governments must recognize that when combatting the Zika virus, any public health strategy that does not have human rights, including sexual and reproductive health and rights (SRHR) at its core, will be limited in its impact and sustainability, while also creating massive grounds for human rights violations.

As a region, Latin America and the Caribbean is characterized by: high rates of unplanned pregnancy, where upwards of 56% of pregnancies are unintended;[3] high levels of sexual violence; limited access to contraceptives and sexual and reproductive health services; and restrictive laws on abortion, where in some cases such as El Salvador, abortion is prohibited under any circumstances and women are routinely persecuted and even criminalized on suspicion of having abortion.[4] Moreover, women who are young, from remote or low-income communities, and/or living in other vulnerable situations, disproportionately face multiple barriers when it comes to exercising meaningful decision-making power and control over their sexual and reproductive lives. In such a context, calls for women to simply delay or avoid pregnancy are not only unrealistic but irresponsible and negligent.

The rapid spread of the Zika virus and its strong association with marked increases in microcephaly and other neurological abnormalities is in many ways new terrain, with new elements continually coming to light, demonstrating a clear need for more research. This uncertainty makes it all the more imperative for governments to undertake from the beginning a holistic, sustainable, and rights-based approach to eradicating the virus and mitigating its effects. Anything less is careless and counter to governments’ human rights commitments under regional and international human rights law.

We thus urge the governments of affected countries both in Latin America and the Caribbean as well as other regions worldwide to undertake a rights-based, reproductive justice, and sustainable development approach towards the Zika virus and any other emerging health issue. Such an approach must be holistic, while recognizing gender equality and women and girls’ empowerment as a cross-cutting priority, in keeping with governments’ agreements and commitments under the 2030 Agenda.[5]

In practice, this approach to combatting the Zika virus must include:

  • Ensuring universal access to a full range of high-quality, voluntary, and user-friendly contraceptive methods, including barrier methods such as female and male condoms, and emergency contraception, as well as comprehensive SRH information and services, including antenatal services to enable early detection of microcephaly.
  • Targeting both men and women in public health awareness campaigns, especially in light of recent evidence that Zika may be sexually transmitted,[6] recognizing that the responsibility for safer sex methods falls on both men and women and cannot be shouldered by women alone.
  • Decriminalizing abortion, and removing all legal and implementation barriers to expand and ensure access to safe, comprehensive, free and high-quality procedures for pregnancy termination, free of requirements for marital or parental consent. As has been flagged by partners,[7] in the context of the many uncertainties and increasing public fears surrounding the Zika virus, calling on women to simply not become pregnant when access to safe abortion is limited or even completely criminalized will inevitably risk driving up rates of unsafe abortion, and ensuing maternal mortality and morbidity. Moreover, restrictive and punitive abortion laws that force a woman to carry an unwanted pregnancy violate women’s right to be free from inhuman and cruel treatment, as noted by Human Rights Bodies.[8]
  • Supporting pregnant women in Zika-affected countries who decide to remain pregnant to be able to carry the pregnancy safely to term, including access to comprehensive pregnancy, safe delivery, pre- and post-partum care and neo-natal care services; as well as the provision of special needs therapy, health and educational services as needed for children with microcephaly.
  • Systemic policy and programme changes that account for the intersections between climate change and SRHR.[9]
  • Immediate implementation of related recommendations under the Montevideo Consensus as well as targets under the Sustainable Development Goals of the 2030 Agenda, particularly those related to health and gender equality, in order undertake effective and holistic protection measures and help curb the spread of the virus.

Click here and here  and here for previous updates.

The last few months have brought some changes to the women of Can’t Catch a Break. Not all are of the life-changing sort, but I still marvel at the pace in which new crises arise in the women’s lives. Illness, death and disappointment in and of themselves are not extraordinary – they are the stuff of real life that all of us experience at one time or another. Rather, it’s the relentlessness. Some of the women don’t have time to catch their breath and assimilate one set of challenges and changes before the next set erupts.

Andrea is still unemployed and lonely. “I had a poor Christmas,” she told me. On the positive side, she is still securely housed in a well-located studio apartment.

 

Ashley is a gloriously happy stay-at-home Mom. I personally can vouch for the cuteness of her children. She posts daily photos of their antics and they keep me in stitches. Her husband is doing very well at work, they had a lovely Christmas, and both extended families are great sources of support and company.

 

Carly has had a busy few months. She remains fully engaged in her spiritual life – fighting Satan and trusting God — though she has not yet found a church that suits her perfectly. She quit the last church she’d been part of when the pastor “made white supremacist comments.” Having spent years living with a wonderful Black foster family, Carly will not tolerate racist comments in her presence.

Her big news is that she is pregnant! With a baby on the way she enrolled in a job training program which she graduated with a certificate that should pave the way for an entry level healthcare job. She still dreams of being a nurse in the future.

In the meantime, she remains stuck in an apartment that is saturated with mold and covered in rodent droppings. She desperately wants to move out but has not been able to find a landlord who will accept a tenant with a “voucher.” (Typically through the federal ‘Section VIII’ program, these vouchers cover rent according to a specific scale for low-income people. In tight housing markets like Massachusetts it is very difficult for voucher-holders to find apartments, even though the voucher guarantees rent; that is, the government agency pays rent directly to the landlord.) Because her living conditions trigger severe asthma, she has spent a great deal of time in the hospital.

For more on her housing struggles click here.

Elizabeth: See “Eulogy for Elizabeth, Update

Francesca is (still) a survivor. She is happy living part-time with the man she met last year. He is a stable, family man living in a semi-rural community at some distance from Boston. He works very long hours so she often comes back to Boston and stays for a few days with friends or with one of her sons. She has many close girlfriends of various ages and generations, and she enjoys being an “auntie” almost as much as she enjoys being a grandmother to her two lovely grandchildren.

She has had some serious health problems over the past months. She lost over one hundred pounds and spent a few stints in the hospital. She has been diagnosed with Crohns and Colitis, and then developed a C.difficile infection in the wake of antibiotics she was given for back-to-back kidney infections. She felt miserable with all of this, but is thrilled with her new svelte body!

Ginger moved back from Florida. She had moved there to be with a man she had met but that fell apart after a day or two. She called to tell me that, “I came to Fort Myers [and ended up] homeless. Last night I had a stomach virus. I threw up all over the bus. I had to go to the hospital. I was there all night. I’d been eating out of the trash. I have nowhere to in Florida.”

She called me from a local sheriff’s office next to the bus station. We figured out how to arrange to purchase a bus ticket for her. The next bus would leave in 12 hours and the trip would take two days. She had no money for food.

I spoke with the sheriff to see if there would be a way to help her out so that she wouldn’t risk being arrested for panhandling or soliciting sex for money. He said no. I wrote in my notes: “The irony that we’ll pay for a night sick in the hospital from eating in the trash, but we won’t pay for someone to get food.”

We spoke briefly when she returned to Boston, but since November I have not heard from her. I’ve tried every phone number and every friend and relative I can think of. I did catch a quick glimpse of her hanging out in the Boston Common with a small group of people whom I know to be homeless. It’s hard to know what to think. For many years Ginger has called me regularly at least once each week.

Isabella has had a horrid few months. She, her husband and her husband’s teenage son had been staying in the small living room of a one bedroom flat rented by a friend of hers. Both she and her husband were doing quite well on a methadone protocol that required them to come to the methadone clinic daily. In the Fall, after many months of applications, she landed a wonderful job. The new company sent her to a training seminar and she began to work in an office setting that she loved. Then, two things happened just about simultaneously. One, a more extensive background check carried out by her employer revealed her history of incarceration and she was let go. Two, her husband picked up heroin use (again), suffered what she considered a “psychotic break” that landed him in the emergency room and then the psych ward, and he destroyed all of their possessions.

Several weeks later he died of a heroin overdose.

Two weeks after that her roommate was given notice to move out; the landlord planned to empty out and renovate the apartment. She is now couch-surfing with a friend who lives in a town quite a distance from the methadone clinic that she needs to attend each morning. Isabella does not have a car.

Kahtia has been having a rough time. She still has not received her children back from state custody and she pines for them, as they do for her. After a few months in a sub-standard foster care situation they now are living with a foster family that Kahtia (who is not allowed to meet the family) believes is good to her kids based on how they are dressed and what they say when she sees them once a week in a supervised visit at the DCF office. I asked what she has to do to get them back. She said she’s already done everything she has to do — parenting classes, therapy, clean urines — and now is waiting on the next court date which is in February (two months off at the time). I asked her why the date is so far off and she said, “that’s just how it is.” Part of the problem is that she’s had at least three different DCF workers and two different DCF supervisors which “prolongs the case” (her words) because each time the new worker has to do a new assessment. She has gone to Court repeatedly and each time things are put on hold because of the new worker.

In the meantime she is struggling with serious health challenges and now needs to keep a portable oxygen tank with her wherever she goes. She has gained a great deal of weight and struggles getting up and down the stairs to her fourth floor apartment. She says it is highly unlikely that she will be able to move to another apartment on a lower floor.

The good news is that her husband is really coming through for her and the kids. He’s been working steadily and bringing all of his income home, coming to all the supervised visits, and staying by Kahtia’s side through the many medical problems and emergencies. He has sat with her in the hospital, stayed up with her at night, and done whatever he can to make her comfortable.

Melanie has long been one of the few women who has been steadily employed, securely housed, on good terms with her family, and in a stable relationship with a very decent man. I hadn’t heard from her in quite a while until she called this Fall, somewhat out of the blue. Distraught, she told me that she has an enlarged spleen. The doctors don’t know why though they have done many tests. Her concern is that her employer (a social service agency) is going to put her on short term disability which means that she’ll be paid only 70% of her salary and she knows that she can’t pay her bills on that. “If I have to go down to 70% of my salary I will get in my check $352 / every 2 weeks.” We went through her budget together dollar by dollar, and her calculation is absolutely correct. “I’ve used up all of my sick time and vacation time with going to doctors and then just being too sick to go into work.” She went on to say, “My job is the best thing. My Aunt said it’s my calling [to help people].”

Her asthma and depression are also acting up and “I am crying a lot” (my note: which is rare for her). She can’t stand on her feet or sleep on her left side. “I’m literally in pain.” The doctors offered her narcotics but she refused because she is an addict (that is how she defines herself though she has not used drugs at all in ten years.) She’s lost 16 pounds – “I can’t eat and I feel overwhelmed.” She also has gall stones in her digestive system, pain in her shoulder and a broken toe. She said the doctors do not know if these problems are related to one another.

Continuing updates will be posted so check back!

Christmas House Decorations wallpapers

Maybe it’s because of the bitterly cold temperatures at night this week, or maybe it’s my own visceral response to overdosing on television shows with happy family Christmas scenes and neighborhood holiday lighting competitions, but I’ve been giving a lot of thought recently to how housing and homes impact health.

About a decade ago I traveled to the Mississippi Delta, Texas’s Rio Grande Valley, south-central Illinois, the mountains of northern Idaho and the cities of eastern Massachusetts to speak with individuals and families scraping by without health insurance. Most of these people worked in construction, retail, agricultural or service jobs. The details varied, but across the country I heard about spiraling poor health, declining employability and growing poverty. In 2015 I made return trips to check in with the people I’d met ten years earlier.[i] While I was able to locate nearly all of the original interviewees who owned their homes (including very modest homes of immigrants in colonias in the Rio Grande Valley), I only located a minority of the renters. Typically, their original phone numbers were disconnected and original addresses belonged to subsequent tenants. When I knocked on neighbors’ doors the most common response was, “I don’t know [so-and-so]. I’ve only lived here for a few months myself.”

In previous posts I’ve written about marginalized Boston-area women who cycle through shelters, jails and the streets. In those contexts the “problem of homelessness” is relatively easy to see and define – all I had to do was visit shelters or walk through the public parks in which people without homes congregate during the day. But for me, it took weeks of trudging through muddy housing developments on the outskirts of Mississippi towns and knocking on doors in public housing complexes in a central Illinois cities to get a glimpse of the lives of those less visible Americans who generally manage to rent housing of some sort for periods of time but teeter on a financial edge that keeps them moving from place to place.

Unfinished housing project at 47-04 198th St. in Auburndale stands abandoned for several years.

On my 2015 reprise tour I looked for a total of 145 people in five states and was able to locate 98 of them. The missing people were not evenly distributed either geographically or by race. In Mississippi, the state that consistently has the poorest health profile in the country, I managed to locate only 11 of the 28 people whom I sought. The utter disappearance of 17 of 28 people did not surprise one local healthcare advocate (he asked to remain anonymous): “People move away to Birmingham or Tupelo to look for work. There is very little home ownership in Mississippi. The common thing is ‘lease to own’ in which a developer arranges for people to ‘lease’ (pay rent) and after 20 years they have an option to buy – to switch the rent to a mortgage. But people almost never make it to the 20 years so the developers keep leasing the same houses over.” Many of these houses would not pass even the most cursory safety inspection in other states.

I was able to locate 70 out of 88 white people I’d originally interviewed and 21 of 28 Latinos / Latinas (mostly in the Rio Grande Valley), but I only found 10 of 29 African Americans. This is consistent with national patterns. According to the US Census, the homeownership rate for the fourth quarter 2014 for non-Hispanic White householders was highest at 72 percent. The rate for All Other Races householders was 55 percent. And for Black householders it was only 42 percent. According to researchers Gregory Sharp and Matthew Hall, “The 1968 passage of the Fair Housing Act outlawed housing market discrimination based on race. …  However, emerging racial disparities over the next three decades resulted in black owners who bought their homes in the 2000s being 50 percent more likely to lose their homeowner status than similar white owners.” Even after adjusting for socio-economic characteristics, debt loads, education, and life-cycle traits like divorce or job loss, blacks were more likely to lose their homes than whites.”

Shanice’s Story

I first met Shanice in 2003 at one of the larger Black churches in Decatur, IL – a church known for its strong fellowship and advocacy on behalf of the community. She was happy to share her story with me:

“When I was 18 I worked a job, it was right after coming out of high school. No insurance and they said I wasn’t eligible for Medicaid. My doctor said that I needed to get my tonsils taken out cause they were so swollen it was almost causing me not to be able to breathe. … And so I had to go on like a payment plan with the doctor. … The whole surgery, the surgeon, the day at the hospital and then I had a setback and had to go back into the hospital cost $15,000. During the following year collection agencies called day and night, often making threats. They’d [especially] call on Sunday nights. Said that I would be going to jail if I didn’t pay them.” At age 20, Shanice filed for bankruptcy.

A few years later Shanice gave birth to her daughter. By this time Shanice was working for a storefront loan company that provided health insurance for her, but not for her daughter (she would have had to pay a premium that she could not afford on her salary.) A few years later their statuses reversed: When Illinois expanded Medicaid for children (Kid Care) her daughter became covered but Shanice, having made the decision to go back to school and learn a skill, became uninsured. Shanice was well aware of the risk she was taking was determined to build a better future for herself and her daughter. “It wasn’t just me living this carefree don’t worry about tomorrow life. Now I have someone that was dependent on me so I had to make decisions for the future. … We moved into a nice apartment, we got power, cable, phone and I got a new car.” During that time Shanice began to eat healthier meals and lost over one hundred pounds. In order to pay tuition, “I got Pell grants and student loans.” I asked Shanice how she was able to get credit to buy a car so soon after declaring bankruptcy. “Oh, they go after bankruptcy people like crazy [to sell them stuff]. I was getting credit cards in the mail every night.”

In 2003, after spending time with Shanice and her daughter at the church where they sang in the choirs, participated in groups and clubs that helped them focus on making good decisions, and volunteered helping out the poor in their community, I described Shanice in my notes as “a young woman on the way up.” She was working part-time at her church with youth and looking for her first professional job. “I just completed 1540 hours of cosmetology school and I just graduated last Friday.”

When Shanice and I walked out of the small room where the church choir stored its robes, I asked her if as a cosmetologist she would get health insurance. She answered, “I can get a job but in this field they don’t give insurance. You have to arrange that yourself.”

….

A year or so later I spoke with Shanice again. With a sense of resignation, she told me that medical and credit card debt had piled up and she was preparing to declare bankruptcy a second time.

….

Fast forward twelve years. I returned to the address at which Shanice was living when I initially met her. She had moved on and none of the current neighbors even knew her name. On USSearch I found six other addresses for her and visited each one of them. Two of the addresses did not exist. One was in a decrepit housing project that had been shut down for several years, though some people continued to squat in the apartments. (I was warned that mostly gang members were there and that it wouldn’t be safe for me to go poking around.) One address was in a middle-class, white neighborhood – none of the neighbors whom I could find knew of anyone named Shanice. Two were inhabited by other Black families who had moved in recently. Stopping by her church, I was told that, “Shanice is no longer a member of this church. She’s moved.” No one at the church knew where.

Health and Housing

It’s not hard to understand the devastating health consequences of homelessness. Living on the streets exposes people to cold, rain and assault. Without a home it’s a challenge to eat proper meals, get enough sleep and keep oneself and one’s clothing clean. The stress of not knowing where one can lay one’s head contributes to misuse of drugs and alcohol. And infections of various sorts tend to spread quickly in crowded homeless shelters. Like the people in the shelters, these health consequences are easily identified and counted.

The health consequences of moving around are less immediately visible to the casual eye. But at a community health center in Decatur Illinois, nurse administrators Karen Schneller and Tanya Andricks elaborated on ways in which churn in housing is related to churn in healthcare. Different states and even different counties and towns have different healthcare resources available to residents. Different providers have different medication preferences and treatment protocols so people stop and start treatments. Even with dedicated staff efforts, it is impossible to provide follow-up care for patients who can’t be reached – whose phones are turned off and whose mail is returned “addressee unknown.”

Jenny Trimmell, public health administrator and Melissa Rome, community liaison at the Vermilion County (Illinois) Health Department explained that children like Shanice’s daughter particularly suffer from frequent moves. “When the Cabrini Green housing project in Chicago was closed to pave the way for gentrification former residents were offered vouchers by the Housing Authority and promised housing and jobs in towns in central Illinois. But there was not enough housing and not enough jobs, so people go back and forth to Chicago. There was a cultural adjustment for many moving from Chicago to more rural downstate.  People were unaware that services outside of the city of Chicago may be limited, such as access to health care providers; bus services that do not run 24/7, etc.  Everyone is frustrated. The kids are in and out of schools and medical records kept by parents are incomplete or non-existent. It is difficult for the Health Department to determine immunization status for these children and frequently immunization series have to be started over due to the unknown immunization status.” Trimmell and Rome went on to explain that without the kinds of community support children develop when they stay put in one school, “there are high drop-out rates, teen pregnancies and drug use.”

Musings

Getting to know and then losing track of Shanice and others in similar situations has made me more attuned to the health privileges of stable and secure housing. My home allows me to accumulate the material objects that anchor and enhance my life, both in immediate ways by giving me space to store medication and in less tangible ways by grounding me in the photos, books and furnishings that tie me to my past and to the people I love. My home provides a hidey-hole for times when the outside world feels overwhelming. It gives me a familiar bed and private bathroom when I am sick, and a kitchen in which I can cook the food that I want to eat when I want to eat it. My home allows me to cultivate neighbors who can lend a hand at times of need and offers me the space to nurture those special bonds with the family that looks out for my well-being. In my own home I have the power to keep out rats, roaches, mold and the dust and down that I am allergic to. I am not dependent on the vagaries of landlords or property management companies. No less important, my home gives me an address at which I receive and retain the paperwork that helps keep my financial, medical and legal life in order as well as reminders of when and where to exercise my right to vote (yes – for candidates who support legislation that makes my community healthier).

I plan to return to Decatur next week and resume my search for Shanice. Maybe she has found another supportive church community somewhere else in the area. Maybe she finally has her healthcare coverage straightened out. Maybe her daughter has escaped being one of the kids who’s been subjected to multiple rounds of vaccinations. Maybe she’s become the star of her high school marching band or debate team. I hope so.

 

 

[i] In each community I began with the contact information people had given me when we first met. Only a minority still lived at the same address or had the same phone number. Then I turned to phone books, social media, Google and other public-access online search engines, including USSearch that listed multiple address histories for many of the people. In each community, if my initial attempts to make contact failed, I then called on common acquaintances, knocked on doors of neighboring houses, and asked at local grocery stores, libraries and churches.

For more on this project:”The State(s) of the Affordable Care Act”

For more on housing struggles, take a look at this article about “Carly”

Within the next months, Massachusetts’ legislators are expected to consider an amendment mandating that “Strip searches of inmates, including the videotaping thereof, shall not be conducted by or in the immediate vicinity of a correction officer or other employee of the opposite sex, except under an emergency or otherwise urgent situation.” Massachusetts Bill H.3444, An Act relative to searches of female inmates, comes in the wake of a successful lawsuit filed in 2011 against Sheriff Michael J. Ashe and Assistant Superintendent Patricia Murphy of the Western Massachusetts Regional Correctional Center in Chicopee. This lawsuit was filed on behalf of Debra Baggett and 178 former and current women detainees at the Chicopee Jail. As Jean Troustine explains, the defendants brought evidence showing that over a period of less than two years 273 strip searches had been videotaped, all of women, mostly by men who supposedly did not look.

The proposed law is certainly a step in the right direction. However, allowing the presence of an officer or employee of the opposite sex under an (undefined) “emergency or otherwise urgent situation” leaves the door open for subjective assessments of “emergencies” (for example, the inmate appears upset – a reaction that I’d expect to be fairly common when faced with a strip search) or bureaucratically based “urgencies” (for example, no officers of the matching gender happen to be available.)

Strip searches ostensibly are carried out in order to prevent contraband from entering prisons, yet reports cast serious doubts on the effectiveness of strip searches in that matter. In fact, evidence indicates that the majority of contraband is brought into prisons by prison employees rather than by inmates. Even if a strip search uncovers a bag of heroin or cocaine hidden on the body, that bag is likely to be a drop in the bucket against the background of the larger market of drugs smuggled in by employees. In other words, even if strip searches could be justified in terms of uncovering contraband (which, in fact, strip searches rarely uncover), to the extent that I have been able to see hard data on the matter, the amount of the uncovered contraband cannot justify this practice. In fact, no one really knows how effective strip searches are at keeping contraband out of prisons which is why I urge the Commonwealth of Massachusetts (and the rest of the country, for that matter) to document every strip search: the specific reason for conducting it and what exactly – if anything – the search uncovered.

National studies have found that strip searches often are conducted to establish power more than for real expectations of finding contraband . According to Deborah L. Macgregor, in an article published in the Columbia Journal of Law and Social Problems, women are particularly targeted for these displays of power. It is not uncommon for prison guards to use children as pawns to coerce women to participate in a strip search. For example, women may be threatened with not being permitted to see their children if they fail to cooperate. “Prison and police officers are vested with the power and responsibility to do acts which, if done outside of work hours, would be crimes of sexual assault. If a person does not ‘consent’ to being stripped naked by these officers, force can lawfully be used to do it,” according to Amanda George in the Australian Institute of Criminology.  George cites women’s accounts of strip searches: “We are strip searched after every visit. We are naked, told to bend over, touch our toes, spread our cheeks. If we’ve got our period we have to take the tampon out in front of them. It’s degrading and humiliating. When we do urines it’s even worse, we piss in a bottle in front of them. If we can’t or won’t we lose visits for three weeks.”

Justice Marshall has described a strip search as “one of the most grievous offenses against personal dignity and common decency.” These searches create “feelings of ‘deep degradation and terror'” and instill psychological reactions that “can be likened to those of rape victims.” The punitive nature of strip-searching is particularly egregious in light of the fact that approximately one third of women incarcerated in Massachusetts have not been convicted of a crime. Rather, they are in jail or prison awaiting trial, typically because they are not able to pay relatively small sums of bail money.

The coercive nature of prison exacerbates the humiliation of strip searches. An estimated 70% of women drawn into the correctional system have experienced physical or sexual violence, and in many cases that includes childhood sexual abuse. Prison procedures requiring the removal of clothing and intimate touching of an inmate’s body are especially traumatizing for women who have suffered abuse in the past. Responses to perceived threats can include alienation, withdrawal, fighting back, extreme outbursts, worsening of psychiatric symptoms or physical health problems, self-injury or suicide attempts, and increased substance use. In the prison context, these behaviors can lead to further punishment, including solitary confinement, and can easily be construed as an “emergency” meriting the presence of opposite sex officers at the strip search.

According to testimony provided by Carmen Guhn-Knight (August 7, 2015) based on interviews with sixty women who were videotaped while undergoing strip searches at the Chicopee Jail in western Massachusetts, “Women with histories of sexual abuse told me of their heightened sensitivity to having their naked bodies video-recorded. They said they returned to their communities re-traumatized, and in some cases with PTSD due to being recorded during strip searches.” Guhn-Knight shares some of the reactions she heard from these women: “Do we have to have the videotape? I don’t want to be videotaped naked. I don’t want to be filmed naked… I don’t want the camera on me.” “Is this going to end up on YouTube? … I’m being filmed while everything’s off? I’m naked being filmed.” “I’m not going to get stripped in front of a camera, that’s pornography.” “[You] take someone’s dignity and then do it again with a camera.” According to Guhn-Knight, “Despite their complaints, these women had no choice in the matter; they eventually removed their clothing themselves or were restrained while an officer removed their clothing.”

While the proposed amendment addresses the gender of the person holding the camera, it does not address the broader problem of video-taping strip searches overall. The taping of strip-searches is ostensibly for the protection of the prisoner; that is, having a record may prevent or at least document abuse during the search. However, the preservation of the tapes opens the door for grievous violations of privacy. In a country in which viewing on-line pornography is widespread (and sometimes unavoidable when unrequested porn sites pop up on screens), women inmates have good reason to fear that the tapes of strip searches may be misused for pornographic entertainment. Doubling down on the harm of the practice of videotaping strip searches, research shows that men who watch pornography are more likely to voice attitudes supporting violence against women and to display dominance and aggression (including choking, gagging and insulting name-calling) toward women while engaging in sexual activity.

Based on my reading of the scholarly literature as well as on my own research with formerly incarcerated women, I believe that the proposed amendment does not go far enough to protect women or men from the pain, humiliation and human rights violations associated with strip searches. I suggest that the law be amended to (1) disallow routine strip searches (2) permit strip searches only in situations when there is clearly defined and documented reason to suspect that the inmate is hiding contraband on his or her body (3) clearly inform all prison staff that strip searches may not be used as a form of punishment or discipline, and institute sanctions against staff who order or participate in strip searches in other than situations where there is clearly defined and documented reason for the search (4) disallow all strip searches by opposite sex officers and employees (5) cease video-taping of strip searches (6) immediately discard all existing video-tapes of strip searches.

For background on Elizabeth’s murder please read Eulogy for Elizabeth.

Nearly a year after she was murdered by a man against whom she had taken out a restraining order, the newspapers have uncovered a bit more of what happened.

The day before she was murdered she called the police with a request that they get her former boyfriend out of her apartment. She told them she had taken out a restraining order against him. According to the press, “When the two officers arrived, they failed to make the simple computer check that would have confirmed the restraining order she told them she had against him, and should have led to his arrest. They took [him] to a detox facility instead.” He came back the next day (allegedly) and battered her to death.

I can’t know what was going through the minds of the officers when they ignored Elizabeth’s plea for help, when they chose not to believe that she had filed a restraining order against the man she wanted out of her apartment. I can only guess that in their minds she was one more drunk, one more loser, one more woman who doesn’t deserve respect because she has been homeless or incarcerated.

While the Boston police may have invested a great deal of time and effort into educating officers about intimate partner violence, they certainly dropped the ball this time. “Police records show [one of the two responding officers] has had 22 internal and citizen complaints filed against him for use of force, disrespectful treatment, and conduct unbecoming. … [The other officer] has three complaints on his record. … He was the subject of a 2006 lawsuit after he led a car chase that left a 15-year-old boy dead in Roslindale.” Yet according to the Patrolmen’s Association attorney, they are “outstanding officers” who, when responding to Elizabeth’s call, did “the best they could in this situation.”

I could be snarky and say that I’d hate to see the worst they could do in this situation. On second thought, that’s not being snarky – it’s simply stating the truth.

Elizabeth – I still have your picture on my desk. I still hear your classic Boston-accent voice telling me — less than a month before you were murdered in your apartment — how grateful you were for finally having a home after two decades of shelters and the streets. I don’t believe in an eye for an eye, that’s not the kind of justice I’ll seek for you. But I will seek justice.