In October 2012, ABC News produced a series on a “Hidden America” in which parents, many of whom are low-income single African-American mothers, are raising children in violent conditions that are unfathomable to most Americans.Reference Bauder1 Reporter Diane Sawyers noted that the number of deaths in Chicago in 2012 were more than the number of United States troops killed in Afghanistan. Many Chicago residents feel as though they are living in a “war zone” and often refer to Chicago as “Chiraq,” a combination of Chicago and Iraq. Director Spike Lee used “Chiraq” for the title of his 2015 film about gang-related violence and the limited opportunities for improving life chances on the South side of Chicago.
But violence in Black segregated neighborhoods in Chicago and elsewhere is not limited to gang violence or gun deaths. In 1966, Dr. Martin Luther King, Jr., gave a speech before the Medical Committee for Human Rights, health care professionals who provided services during the Mississippi “Freedom Summer Project.” Dr. King stated, “Of all forms of inequality, injustice in healthcare is the most shocking and inhuman.”Reference Moore2 One month after the assassination of Dr. King, Coretta Scott King echoed his words at a May 1968 Mother's Day March for Welfare Rights that was part of the Poor People's Campaign (established in 1967 to advocate for low-income individuals of all races and to highlight the need for jobs, affordable and quality housing, etc.). “[S]tarving a child,” she said, “is violence … Ignoring medical needs is violence. Contempt for poverty is violence. Even the lack of will power to help humanity is a sick and sinister form of violence.”Reference Williams3
Many of the neighborhoods with high levels of gang and gun violence also have high levels of substandard housing that expose children and adults to other extreme and pervasive health threats such a toxic mold. Black residents in these neighborhoods also face mental health challenges due to post-traumatic stress disorder and depression from witnessing gun violence and losing loved ones. Another layer of mental distress is added when residents cannot afford to move to safe neighborhoods with quality housing and express a sense of feeling trapped.
Scholars are beginning to use the concept medicalization of poverty to examine how the United States spends large amounts of money on illnesses related to poverty but invests much less in preventing these illnesses and the conditions that create them, such as economic insecurity, housing instability, continuous exposure to violence, and racism. Risa Lavisso-Mourey, President Emerita and former CEO of the Robert Wood Johnson Foundation, makes this point: scholars and advocates can no longer seek to address poverty or health; instead, to effectively reduce either, “we must address both, as well as the contributing factors they share.”Reference Lavizzo-Mourey, Andrews, Erickson, Galloway and Seidman4
This article examines the medicalization of poverty in the lives of low-income Black mothers and children and describes how living in neighborhoods with high levels of violence affects their mental and physical health. This article shares the results of a recent qualitative study examining issues of neighborhood stress and resources affecting the lives of low-income Black mothers in Chicago. Exposure to interlocking systemsReference Crenshaw5 of inequality demands dramatic and innovative community and policy solutions. Some promising projects being considered for Chicago are discussed last.
This article examines the medicalization of poverty in the lives of low-income Black mothers and children and describes how living in neighborhoods with high levels of violence affects their mental and physical health. This article shares the results of a recent qualitative study examining issues of neighborhood stress and resources affecting the lives of low-income Black mothers in Chicago. Exposure to interlocking systemsReference Crenshaw5 of inequality demands dramatic and innovative community and policy solutions. Some promising projects being considered for Chicago are discussed last.
I. Affordable and Safe Housing: The Intersection of Race, Class, and Gender
In the 54 years since passage of the 1964 Civil Rights Act, social inequalities have persisted and residential segregation, lower quality housing, high rates of unemployment, neighborhood violence, and health disparities reflect the harsh lived experiences of many Blacks in the U.S.Reference Mendenhall, Henderson, Scott, Evans, Bell and Burton6 From 1970 to 2004, about 2.7 million Black Americans died prematurely, in part, due to poverty and racism.Reference Rodriguez, Geronimus, Bound and Dorling7 Social inequalities are also implicated in the homicides occurring throughout large cities in the U.S. For example, in 2016, Chicago led the country in gun violence with 4,367 shooting victims and 780 homicides.Reference Mitchell8 Between 2008 and 2014, almost half of Chicago's homicide victims were under 18 years of age.Reference Gorner, Geiger and Dizikes9 During the weekend of August 3, 2018 in Chicago, 74 individuals, ranging from 11 to 62 years of age, were shot; 12 died, two of the murdered were 17 years of age.Reference Buckley10 During the weekend of August 17, at least 58 individuals were shot and seven died, one victim was 17 and another was 16 years of age.11 Scholars researching adverse childhood experiences caution that traumatic events during childhood are associated with disease and premature death during adulthood.
The social and physical conditions in which individuals live, work and play are critical to the health of Black women and children. Their struggles for survival are often hidden, ignored, or even denied because the trauma, injustice, and pain associated with them can be overwhelming to process. Standpoint theory provides a lens to understand how the particular social location of the lives of low-income Black women frames their lived experiences around interlocking systems of racism, classism, and sexism. Standpoint theory argues that where a group is hierarchically situated in society creates shared histories and challenges that result in a collective group knowledge.Reference Collins12 An example of shared history is that Black women are more likely to have higher levels of maternal illnesses and mortality associated with pregnancy compared to White women.Reference Simmons13 Another example of how social location creates shared experiences and group knowledge is segregated housing. The level of housing racial separation in the U.S. is similar to the levels of racial segregation during Apartheid in South Africa.Reference Roberts14 High levels of racial segregation reproduce Black poverty and health inequalities.
Scholars have identified housing as a key social determinant of health because poor and unstable housing conditions are associated with high levels of stress, mental distress, disruptions in sleep, drug use, and chronic disease. TalkPoverty.org is a blog where low-income women write about their struggles with poverty, hunger and housing. One of the contributors, Sherita Mouzon,Reference Mouzon15 writes her story called “My Poverty, My Trauma: “I have lived in Philadelphia, in poverty, for most of my life. I remember the smell of mold and mildew. I would watch as my most valuable possessions were destroyed by them. The smell of decay was all around me. I remember being cold and being in houses with no heat or hot water.”16 The issues of mold and mildew, nonfunctioning plumbing, and cooking meals outside the house because of a nonfunctioning stove are common lived experiences of those in poverty. The voices of low-income Black mothers belong at the center of discussions and solutions about the medicalization of poverty that is causing many U.S. citizens to endure disease burden and premature death in a “Hidden America.”
To gather these voices and place them in context, I and a team of seven Black women researchers (faculty and students) interviewed 93 single, low-income participants in the South Chicago Black Mothers' Resiliency Project. The goal of this project is to illuminate and bring to the forefront the lived experiences of these mothers that are often hidden from view of most Americans. We also want to involve Black mothers in genomic research in ways that are culturally sensitive and transformative.
This multilevel triangulation research projectReference Creswell and Clark17 included interviews (2 hours on average), field observations, surveys, psychological scales (anxiety, post-traumatic stress disorder and depressive symptoms), and genomic analysis. The interviewers included questions about neighborhood stress and resources, coping mechanisms, and health. Post-traumatic stress disorder and depressive symptoms were measured using the PTSD Checklist (PCL-civilian)18 and the Patient Health Questionnaire (PHQ9),Reference Kroenke and Spitzer19 respectively. The mothers received $40 for their expertise and time.
The interviews were transcribed verbatim, put into the Atlas.ti qualitative software and coded using aspects of grounded theory: open, axial and selective coding.Reference Strauss and Corbin20 Open coding involved underlining key phrases, creating categories or themes and engaging in constant comparisons to ensure coding consistency. Axial coding involved determining the relationships between the categories and themes followed by identifying the core themes (selective coding). Pseudonyms are used when describing the mothers' experiences. One of the core themes that emerged involved costly, but preventable health problems in the mothers and children.
A. Poor Housing Quality: “Deadly Toxic Mold”
A total of nine mothers reported issues with their place of residence and at least three of those mothers reported severe mold in their apartments. Their stories reflect several medicalization of poverty themes. Rosanelle describes high levels of stress in her life and how the recent illness of her son due to mold led to her own hospitalization. When asked if her high levels of stress ever made her feel depressed, she states:
It probably could have. It's just that I won't allow it. [Interviewer: Tell me more about that. How do you not allow it?] [I don't] you know get into that, where I just wanna kill myself … If a thought like that ever pop into my head, I pray it instantly out because that ain't nothing but the devil. [Interviewer: And so sometimes did you feel kinda like hopeless?] A lot of times I felt hopeless like, man, I have the worst luck in the world. Why is this happening to me? I'm a good person. I try my best to be good to everybody. It's like don't nothing work for me. [Interviewer: And so did it affect your sleep?] I couldn't sleep. It had got at point in my life, I was sleeping like an hour and a half a day. It got so bad that my body shut down on itself and I was in the hospital for a couple of weeks for lack of rest, but I could not sleep. [Interviewer: So what was going on then?] My lights had got cut off. My house was full of mold in the basement. My son had got osteomyelitis. He had got osteomyelitis from the mold in my basement … So one day when he woke up he couldn't walk and his eyes had turned dark yellow. And his kidneys had stopped functioning on they own. His liver had stopped functioning on [its] own. He had small black spores all over his lungs. He stayed in the hospital for three frickin months!
Rosanelle advocated for her family by calling a lawyer who had the house tested. The house was “full of high levels of deadly toxic mold and that we had to move out instantly.” During this time she describes not feeling well, “I just couldn't sleep then, I started having headaches that hurt so bad I couldn't take light or sound [for about five months].”
While her son was in the hospital for three months, Rosanelle continued working as a home health aid from 6 to 9 a.m. for one client and 12 to 3 p.m. for another client. She traveled round trip four hours by bus and train because one of her clients lived on the North side of Chicago and she lived on the South side. When she went to work in the morning, she had someone come and sit with her son in the hospital. After work, she would go to the hospital to see her son and then back to the house to check on her other children who were also sick from the mold. She then returned to the hospital at night to sleep in a chair in her son's hospital room. This schedule went on until she collapsed from exhaustion and had to spend a couple of weeks in the hospital — her “blood pressure was through the roof.”
Rosanelle describes the day she collapsed: “I was at my momma[‘s] house. I was sitting down. She was asking me what was wrong. I was crying because my head was hurting. Then, I just passed out. They [doctors] said ‘it was basically because I was stressed out and tired.’” Rosanelle's hospital bill for her portion of the two-week stay was $12,000. Fortunately, it was covered by her insurance. Her son's three-month hospital bill was covered by the landlord, but he did not provide additional compensation for her son's illness. She stated “he [lawyer] sued but the landlord didn't have any money, so that was just a waste of time.” Rosanelle's story reflects several interlocking societal issues that resulted in a total of almost four months of hospital bills for her and her son and an emergency room bill after she collapsed at her mother's house.
Rosanelle's experiences with mold and having her child hospitalized are echoed in Earnice's story. Ear-nice describes how she experienced headaches and her children were diagnosed with asthma and mold around the spine. She states
At first, I use to get headaches when I used to live on [street name]. And the reason why was [that] both my kids was born with asthma. But the reason why I found out they had asthma [was] because the apartment I was in on [same street name as above] had a lot of mold in it. So that's how my son got diagnosed with it. So … when I had my second child, I moved from that apartment to another apartment, and that apartment has mold in it. So my baby ended up in the hospital for like a month [she later says two months]. They said the mold was around his spine and stuff … So they moved me out of that apartment, to an apartment … come to find out, it [the new apartment] had mold. It started … mushroom started growing in our ceiling. So, I told the landlord, and they didn't do anything. So they [the authorities] was like, “Well you need to tell them to take off the carpet and they need to do something about that.” So I gave [the landlord] all the doctor papers, and they still didn't do nothing. I had to call, I went to the alderman's office and he called channel 32 news. They came out to my apartment and it was in the news. I wanna say about two months later, they moved me out into this building.
Rosanelle's and Earnice's stories highlight the danger and untold cost of mold, particularly for vulnerable children. Earnice evinces enormous amounts of agency as she engaged actors in medicine (doctor's note), the political system (alderman), the media (channel 32 news) and the housing industry (landlord). Even after engaging these actors, she and her family continued to live in an apartment with mold for two months before they moved her out of the building.
Poor quality housing is just one aspect of low-income Black mothers lived experience. Over half of the mothers interviewed reported wanting to leave their neighborhoods due to the high levels of violence but feeling trapped because they did not having enough money to leave.
B. Rippling Costs of Poverty and Violence
The unfathomable situations associated with poverty in a “Hidden America” create conditions where stress gets “under their skin” to negatively affect Black mothers' health. The mothers reported experiencing back pains, stomach aches, hair falling out, panic attacks, hands shaking, insomnia (sometimes for two days), fainting from exhaustion, and a lack of sexual desire. In terms of psychological costs, 56% of the mothers reported post-traumatic stress disorder (PTSD) symptoms, and 48% reported depressive symptoms. Unfortunately, the children are not immune to the high levels of violence in their communities despite their mothers' hyper vigilant efforts to try and protect them physically and mentally. Angie describes the trauma her children have witnessed and their vulnerability to PTSD.
I can't handle it … It stress me out when I can't take my kids to the park over there or they can't go to the store or they have to go to a certain store because this block [is] into it with that block … It happens in every neighborhood. My kids have seen people shot. My kids' friends have been shot. My kids' friends have died. It's just not only stress for adults, it's a lot on the kids. Kids ask you a lot of questions [about the violence] … Like my son's friend got shot in the eye at the gas station on his way to school and died … He was on his way to school [at] 8 am in the morning, and he was on the wrong side of the tracks … Then my daughter's friend [was] shot in the back of the head standing on his grandma's porch. So it's like you know they [children] have witnessed this. [Interviewer: So how did they respond?] They [children] were scared for a long time. Crying a lot for a long time and they didn't want to go nowhere [Interviewer: As a mom, what did you try do to help because that's hard to see your kids suffering like that.] All you can do is talk to them and pray for them that's it. [Interviewer: Does the school have counseling like Sandy Hook?] No. [Angie puts up air quotes to say that the school is supposed to have counseling but it is not accessible.] She's [the counselor] never there. [The counselor says] “Oh, call back in the morning. We're busy right now” [I tried] three times. After the third time, I quit.
Angie's story reflects the consequences of interlocking oppressions for Blacks at the margins of society. Angie's children's trauma is manifested in tears, fear, and a withdrawal from their normal activities. She engages the educational system on their behalf but feels that counseling services to help them process the grief are not available like they are in more White and privileged areas of society.
Despite these interlocking conditions and their devastating consequences, Chicago's mental health infrastructure has been dramatically cut. Between FY2009 to FY2012, about $187 million was cut from state funds for mental health services.Reference Honberg, Diehl, Kimball, Gruttadaro and Fitzpatrick21 Another example of Chicago's contracting mental health infrastructure is the closure of Dr. Carl Bell's Community Mental Health Council which served mostly low-income Blacks on the South side, about 26,000 patients annually at its peak.Reference Ihejirika22 Thse fiscal policies did not appear to pay. Between 2009 and 2012 in Chicago, the use of emergency room visits by individuals in psychiatric crisis went up by 19%.Reference Kadner23
Despite these interlocking conditions and their devastating consequences, Chicago's mental health infrastructure has been dramatically cut. Between FY2009 to FY2012, about $187 million was cut from state funds for mental health services. Another example of Chicago's contracting mental health infrastructure is the closure of Dr. Carl Bell's Community Mental Health Council which served mostly low-income Blacks on the South side, about 26,000 patients annually at its peak. Thse fiscal policies did not appear to pay. Between 2009 and 2012 in Chicago, the use of emergency room visits by individuals in psychiatric crisis went up by 19%.
II. Dismantling Inequality and Creating a Culture of Health
There is need for multilevel neighborhood approaches that focus on the long-term policy goals of neighborhood change and immediate goals of supporting Black mothers who are using all of their psychological, economical and spiritual resources to survive and raise children under crushing inequality in U.S. society. The mothers highlighted here also show us something else. Their resiliency demonstrates an essential health and wellness principle, namely that the actions they take to protect themselves and their children reflect cultural strengths — spirituality; women-centered networks; and engaging various actors in their communities, law, and policy. These extreme poles of vulnerability and strength reflect Black history and Black life on the margins of society.
Looking at that history, in 1891, Provident Hospital in Chicago opened as the first hospital controlled by Blacks.Reference Gamble24 Provident staff and activists led health education campaigns to bring medical resources to the Black community, enforce sanitation laws, clean up slum tenements and to fight against housing segregation as part of the struggle against high death rates from tuberculosis. As with Provident Hospital in the late 1800s, bringing medical resources to the Black community must involve a multilevel approach that extends from individuals to social determinants of health. Community programs in health education are needed, along with policy investments to prevent mental and physical disorders by addressing the unfathomable stress and trauma that residents of a “Hidden America” are exposed to daily.
Scholars at the University of Illinois at Urbana-Champaign (in African American Studies, Sociology, Human Development and Family Studies, Genomic Biology, the Humanities, Art and Design, Gender and Women's Studies, Business, Computer Science, and Carle Illinois College of Medicine, Carle Health Systems) are working in conjunction with businesses, churches, hospitals, policy-makers, community organizations, community members and activists in Chicago on an innovative program called DREAM — Developing Responses to Poverty through Education And Meaning — and De.SH(ie) — Designing Spaces of Hope (interiors and exteriors).Reference Mendenhall, Linear, McKee, Lamers, Mouawad, Elmesky, Yeakey and Marcucci25 A guiding principle of DREAM and De.SH(ie) is to bring individuals together from all sectors of society to create innovative and sustainable solutions to entrenched societal problems such as poverty and community violence.
Three projects are currently being considered by DREAM/De.SH(ie). One is the DREAM Black Health Community Campaign that will provide Black mothers with information about the latest science of genomic biology and how stress gets “under their skin” to negatively affect their health. The campaign also highlights stress reduction activities that promote mental and physical health, such as mindfulness, spirituality, artistic expression and women-centered networks fostering civic engagement. Another project involves the development of an incubator to facilitate innovation and entrepreneurship with the goal of first fostering economic stability for those struggling to make ends meet and then accumulating wealth for low-income Black women and their families. Research from the University of Chicago Crime Lab showed that when youth in Chicago were provided summer jobs, violence dropped by 43% over a 16-month period.Reference Ingmire26
The final project relates to developing new construction material and methods to build small homes for $30,000 or less. The project will be accompanied by a workforce development initiative, which will employ community residents. The goal is to have families pay off their homes and start to accumulate wealth that can be passed down to their children.Reference Mendenhall, Kramer and Bellisle27 The Earned Income Tax Credit (“ETIC”) is a policy lever that families could use for their down payments and to significantly decrease the principal on their $30,000 loans. The EITC provides low- and moderate-wage workers with a federal tax credit to supplement their earnings. In 2017, the EITC refund was $6,318 for a family with three or more children and $5,616 for a family with two children.28
Other policy levers for community economic development include Tax Increment Financing (TIF) and Community Benefit Agreements (CBAs). TIFs are tools that help city governments obtain funds, from property taxes, to facilitate economic development by investing in public works projects (e.g., parks, schools, libraries and creating living-wage jobs) or subsidizing private developers (e.g., build stores and housing).29 A consequence of TIF development may be gentrification which makes it difficult for the original residents to remain in their improved communities. One possible tool to address this issue are CBAs, which are contracts designed to allow community members to share power with developers working on projects in their neighborhoods. Ideally, CBAs allow the community to voice the type of amenities or alleviation of negative issues they want from developers in exchange for their support of projects. These contracts allow the community to hold developers and policy makers accountable to the stated agreements.Reference Gross, LeRoy and Janis-Aparicio30 Because TIFs are designated for “blighted areas,” the communities on the South side of Chicago described in this article are eligible and can be used as examples of how developers and public officials partner with residents for housing and economic development.
These multi-sector efforts can transform a “Hidden America” at the margins of society into thriving communities where the violence of structural inequality is replaced by a culture of health — such as, economic prosperity, safe and affordable housing, and prevention and treatment of illnesses. Scholars who document the medicalization of poverty, the preference for our society to invest large sums of resources on treating poverty-related illnesses, provide insight into a much needed paradigm shift towards a focus on prevention and holistic well-being in all areas of life.
Acknowledgements
Thank you to all the members of the research team who assisted with recruiting participants, as well as collecting, transcribing, and analyzing data. Thank you to the participants for sharing your lived experiences that include both vulnerability and strength. Funding was provided by the University of Illinois at Urbana-Champaign Research Board and the Richard and Margaret Romano Professorial Scholarship.
