Health equity, as defined by keynote speaker Camara Jones, Morehouse School of Medicine, is the assurance of the condition of optimal health for all people. She noted that this differs from the Healthy People 2020 definition, which says health equity is the attainment of the highest level of health for all people. Jones agreed that this is the ultimate goal, but argued that health equity should be seen as a process rather than a final outcome. In the keynote session, three presenters related personal stories and historical accounts of social and racial injustices, and the impact that structural racism has on long-term health outcomes. Jones then addressed the social determinants of health, the social determinants of health equity, and the interconnection between racial inequities and disparities.
SHAPING THE PUBLIC NARRATIVE THROUGH PERSONAL ACCOUNTS
Deborah Klein Walker, past-president of the Global Alliance for Social Justice and Behavioral Health, introduced Emily Haozous, the University of New Mexico College of Nursing; Devin Reaves, Brotherly Love House in Philadelphia; and Christine Vining, Center for Development & Disability at the University of New Mexico, to share personal accounts to frame the day. She highlighted the need to respect personal stories, recognize and learn from the past to shape the present and future, and understand the challenges experienced by people of color and how the majority cultures have hindered opportunities for equity.
“Complicated Lives” of American Indians and Alaska Natives
Emily Haozous focuses her work on oncology nursing and end-of-life care. She conducts research on eliminating health disparities among American Indians and Alaska Natives in the Southwest and nationwide. Haozous is a member of the Chiricahua Warm Springs Fort Sill Apache Tribe.
At the University of New Mexico, 5.6 percent of undergraduate students are American Indians, a relatively high percentage when looking at the overall Native American population in the United States. She said the university has had a difficult time retaining Native American students; the explanation that has been provided is that Native students live “complicated lives.”
Haozous said dealing with complicated lives means being creative and identifying ways to coach students to be more successful. For example, many Native students live hours away from campus, and she suggests they make audio recordings of their notes and lectures to study during their long commutes. She has also advocated on behalf of her Native students with faculty, helping her colleagues understand that the ceremonial calendar should be considered when scheduling tests and projects.
Haozous stated that she recognizes other complications in students’ lives by relating to experiences in her own family’s life, including health and social challenges. “This takes a lot out of you,” Haozous acknowledged. She realized her colleagues do not have to coordinate their schedules around such events. With this recognition, she advocates for students when sitting in meetings where people do not take these complications and competing interests into consideration. Haozous feels that when these events occur, blame is assigned to the students, and the lack of cultural competency leads to institutional racism that exists within the education system, which perpetuates disparities. She ended by acknowledging the privilege she has of illustrating what “a complicated life looks like for someone like me.”
Journey Through Recovery and Social Justice
Devin Reaves established and operates Brotherly Love House, a recovery residence in Philadelphia. As a community organizer and grassroots advocacy leader, he worked on the expansion of access to Naloxone (the medication used to block the effects of opioids), implantation of 911 Good Samaritan policies in his community, and the expansion of youth-oriented systems. He has been in recovery from substance abuse since 2007.
He recounted his childhood in a military family that frequently moved. In high school, he began using cocaine with a friend, which led to a substance use disorder. After 5 years of hard work, mentorship, supervision, and guidance, he was accepted to the University of Pennsylvania Master of Social Work program. His high school friend, however, died the summer
Reaves was accepted into graduate school. Throughout his graduate education, Reaves wanted to take action and effect change rather than maintain the status quo. He spoke to anyone willing to listen and established a coalition of 100 organizations. He connected with legislatures to introduce legislation that expanded access to Naloxone.
Reaves highlighted the importance of creating and becoming agents of change. He said the United States is not prepared to face the enormity of the opioid epidemic. Relating to the topic of health disparities and his own experience, he commented, “My problem isn’t that the system failed me for a decade . . . my problem is that no one told me that recovery is possible. I am much more likely to end up dead or in jail than to graduate with an Ivy League degree. And that’s not right.”
Reaves encouraged participants to participate actively in social justice, which requires the involvement of people of color—including women of color and trans people of color. He also suggested that participants “use their privilege to give credence to the next activist like me.”
A Living History
Christine Begay Vining, a bilingual Navajo speech-language pathologist, began her introduction in Navajo, highlighting the importance of speaking the language that connects her work with communities and serves a vital role in their health and well-being.
The lived experiences of indigenous people are often forgotten, Vining said, observing that the experiences of children and families living on reservations are often invisible to the health care system that is not familiar with reservation life. She recalled the Long Walk, the forced relocation of the Navajo people in the 1860s, including her ancestors. In 1968, Vining continued, a treaty was signed and her people were allowed to return home. Her family settled in an area known as the Hopi Partition Land, but were forced to relocate again in what became known as the second Long Walk. Similarly, Hopi communities living on the Navajo Partition Land were also forced to move. A freeze on construction, from 1966 to 2009, forced generations of families to live together in substandard dwellings lacking infrastructure, electricity, and plumbing.
Vining grew up in a Hogan, a three-room dwelling without electricity or plumbing. Her family relied on firewood to keep warm during the winter. In 2012, the Environmental Protection Agency (EPA) estimated that 54,000 residents of Navajo Nation lacked access to public water systems and 24 percent of the homes were uninhabitable. “The freeze and relocation has affected our people physically and mentally,” she said. “The impact is unimaginable, including mental illness, depression, youth suicide, and alcohol and substance abuse.”
Vining also shared memories of a childhood raised with strong values and cultural traditions. “Having access to strong family and cultural connections at an early age provided a foundation for enduring unimaginable hardships,” she said. Many of her relatives and community members on the reservation later discovered that they were living on contaminated land and suffered significant health problems due to pollution in the air and water from oil drilling and uranium mining. She said that EPA has reported over 13,000 abandoned mines on the reservation, and nearly one-third of unregulated water in the western part of Navajo Nation exceeds drinking water standards for kidney toxicants, including arsenic and uranium. Many people have become ill or died from cancers and autoimmune diseases.
In closing, Vining stated that historical and intergenerational trauma continues to impact the health and well-being of her people. The needs of her community, and all tribal communities, have largely been ignored by society. She expressed hope that this and other stories will strengthen the resolve to help Native people face the challenges of health disparities and recognize the mental, behavioral, and developmental needs of children living on reservations.
DEFINING SOCIAL DETERMINANTS OF HEALTH AND SOCIAL DETERMINANTS OF EQUITY
Keynote speaker Camara Jones emphasized the seriousness of the morning’s conversation, recognizing the commitment of the forum and the Roundtable on the Promotion of Health Equity to addressing health disparities for children, families, and communities. She began by stating that racism is foundational as this country’s “original sin.” Jones said that when she speaks about racism, parallels should be drawn to other systems of structured inequities, including ableism, heterosexism, and economic systems that perpetuate inequities.
Jones cited the Healthy People 2020 definition of health equity (U.S. Department of Health and Human Services, n.d.), which is the attainment of the highest level of health for all people. The goal, she continued, is the attainment of the highest level of health equity; thus, she asked, if the highest level of health has been attained for all people, is the work then done? In defining health equity, Jones posed three questions:
- What is health equity? Jones argued that health equity is not a goal; rather, it is the assurance of the condition of optimal health for all people.
- How is health equity achieved? Achieving health equity, according to Jones, requires three components: (1) valuing all individuals and populations equally—that is, there are no invisible, undervalued, or disposable people; (2) recognizing and rectifying historical injustices; and (3) providing resources according to need—not equally, but according to need.
- How is health equity related to health disparities? Jones said health disparities are the differences in outcomes; when health disparities are eliminated, health equity will be achieved.
Jones highlighted the report Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, which concluded that health disparities arise due to differences in quality of and access to health care (Institute of Medicine, 2003). The report documented examples, across a number of studies, of differences in how vigorously chest pain might be investigated or treated depending upon race or ethnicity, even within the same health care system. Furthermore, there are many who are unable to get into the health care system in the first place. Health is not created within the health sector, she said. Health is impacted by the conditions of people’s lives, and health disparities arise through differences in underlying opportunities, exposures, and stresses that make some individuals and communities healthier or more vulnerable to illness.
The Cliff Analogy
Jones has developed a theory called the Cliff Analogy to describe different levels of health interventions for populations.
There exists the cliff of good health, she said. If someone falls off the cliff, he or she may be delighted to find an ambulance at the bottom of the cliff to provide care. Those concerned about the risk of falling off the cliff might ask what health interventions can be implemented other than stationing a number of ambulances at the bottom of the cliff. Jones suggested a safety net: if people fall, they will be caught in the net before they are crushed at the bottom and in need of the ambulance. However, nets often have holes through which people may fall. Another suggestion is a trampoline. While the trampoline may not have holes, Jones observed, people may find themselves bouncing up and down on the trampoline at half functionality, unable to return safely to the top of the cliff. Jones proposed a fence might be placed at the edge of the cliff to prevent people from falling off, specifically a strong fence that could withstand the pressure from entire populations pressing up against it. Even better, she argued, is a health intervention that moves populations away from the edge of the cliff so they are not pushing up against the fence.
Jones reviewed the levels of health interventions described in the analogy: the ambulance at the bottom of the cliff is medical care or tertiary prevention, which involves preventing complications from diseases that have manifested, such as preventing amputations from diabetes. The net represents safety net programs, often in social services, as well as secondary prevention, early detection, and screening. The fence represents primary prevention, which prevents bad things from happening, such as immunizations in clinical settings or policies that limit purchase of tobacco products to minors. Finally, moving the population away from the cliff’s edge is what Jones described as addressing the social determinants of health.
The cliff of good health has a fatal flaw, noted Jones, because it does not address how health disparities arise. It is not flat and two-dimensional, she said, but a three-dimensional cliff. Some areas at the base have access only to ambulances that have flat tires or are moving in the wrong direction, and some areas have no ambulance at all. Also in some areas, there are holes in the nets and trampolines, or the fence is broken. Jones explained that it is these vulnerable areas of the cliff where populations are being pushed closer and closer to the edge.
Jones said health disparities arise based on the three-dimensionality of the cliff. There may be differences in quality of care (represented by the ambulance moving slowly or in the wrong direction), differences in access to care (represented by the absence of an ambulance or safety net), and differences in underlying exposures and opportunities (represented by the close proximity of one population to the edge of the cliff). With this, Jones shared a set of questions to consider when addressing health disparities, such as identifying the distribution of resources among populations beyond those recognized as social determinants of health. She explained further that there are social determinants of equity and inequity—they consist of systems of power (e.g., racism, sexism, heterosexism, ableism, and economic systems). See Appendix C, Continuing the Conversation, for a full list of questions posed by Jones.
Jones restated the three dimensions of health interventions. Health services are represented by the ambulance at the bottom of the cliff, the trampoline midway down the cliff, and the fence at the edge of the cliff. Going beyond the three dimensions, there is the flat plane by the line of the cliff. The health care system itself can be overwhelmed when the population is pushed against the fence, but there are opportunities for improving health by moving the population away from the cliff and further out across the flat plane. “This is where we address poverty, neighborhood conditions, employment, and other social determinants of health,” she said. “We must do this to have sustained improvements in health outcomes.” Given this, Jones stated, if the population is moved away from the cliff without recognizing its three dimensionality, there is a risk of moving only some of the
population, but not all of the population, and worsening health disparities. She continued by stating that whatever part of the cliff on which people are operating, they need to address the three dimensionality and the differential distribution of resources in populations. “That is our citizen role,” Jones stated.
Jones encouraged workshop participants to start conversations with communities using the Cliff Analogy. For example, in considering infant mortality, the ambulance is the neonatal intensive care unit; the net and trampoline are prenatal care; the fence is women, infants, and children’s programs and excellent maternal nutrition. And moving people away from the cliff’s edge represents educational opportunities so that young girls do not have babies and living wages that keep pregnant women from living in poverty. Discussion questions included in Appendix C can facilitate these conversations with communities.
Barriers to Achieving Health Equity
Jones said a barrier to achieving health equity in the United States is its ahistorical nature. She argued the nation disconnects the present from the past. It is necessary to talk about history, she stated, and to explore the system of power that is foundational to the country: racism. Many people, she continued, are in denial of its continued existence and profound impact on the health and well-being of the entire nation.
Jones defined race as the social interpretation of people in society; racism is the system that operates on that so-called race to structure opportunities and assign value. She clarified that racism is a system and not an individual character flaw or personal failing. Rather, she continued, it is a system of structuring opportunities and assigning value on the basis of race, the social interpretation of how one looks. As an example, Jones stated that in Washington, D.C., she is viewed as black, but in some parts of Brazil, she would be considered white, and in South Africa, she would be considered colored. Despite the same physical appearance, the social interpretation of her appearance would assign her to three different racial groups. If she were to stay in any of these settings long enough, she explained, her health outcomes would probably take on that of the group to which she had been assigned despite having the same genes in all three settings.
Racism unfairly disadvantages some individuals and communities, said Jones, noting that every unfair disadvantage has its reciprocal unfair advantage. Racism saps “the strength of our whole society through the waste of human resources,” said Jones. When the country is not vigorously investing in children because of the color of their skin or the neighborhoods they came from, she said, the genius of these children and communities is lost. Jones described the genius caught in the system by discussing the prison sys-
tem, in which many men of color cycle in and out. Once leaving prison with a felony conviction, access to work and housing may be limited, as well as the ability to vote. She called for the interruption of the cycle of genius because of structured systems of power that unfairly disadvantage individuals and communities based on race. She also called for conversations around the dinner table to bring a sense of urgency to these issues in order to dismantle the system and replace it with a system in which all people can know and develop their full potential.
Allegory on Racism
Jones shared a story from her time in medical school when she and her friends went to a restaurant. As they sat at the table, she looked across the restaurant and noticed a sign, which she said was a startling revelation about racism.
The sign read open. Had she not thought anything of it, Jones continued, she would have assumed that other hungry people would be able to come in, just as she had done. She became cognizant of the two-sided nature of the sign. Because of the hour, she knew that the restaurant was indeed closed. Hungry people only a few feet away but on the other side of the sign would not be able to enter, sit down, order their food, and eat. Jones explained racism structures in society through a dual reality like the open/closed signs. Those sitting inside the restaurant at the table of opportunity see the sign that says open and do not recognize the two-sided nature of the sign. The system of inequity is difficult to recognize for those who are privileged by it. She cited several examples: it is difficult for men to recognize male privilege and sexism, just as it is difficult for white Americans to recognize white privilege and racism.
However, Jones stated, those on the outside of the restaurant are well aware of the two-sided nature of the sign. The sign they see says closed, and the restaurant is closed to them, but not closed to the number of people they see inside eating. Jones reiterated that when one is inside the restaurant, they may ask: Is there really a two-sided sign? Does racism really exist? It is hard to know when you only see open, she stated.
Part of the privilege, Jones continued, is not having to know that the two-sided sign exists. But once one does know, the choice to act and the choice to name racism is empowering. If a person cares about those on the other side of the sign, she said, he or she can ask the restaurant owner to open the restaurant again, pass food through the door, break the glass to open the restaurant, or tear down the sign. “What you will not be doing is saying, ‘Why don’t those people outside just come in, sit down, and eat?’ because you will understand the two-sided nature of the sign,” stated Jones.
Jones asked the participants to consider the definition of racism and how it can be generalized to define other kinds of structured inequity (see Appendix C for discussion questions on this allegory on racism). For example, sexism is structuring opportunity and assigning value based on gender that unfairly disadvantages some and unfairly advantages others. This exercise of recognizing and defining other kinds of structured inequities, she explained, is one way of expanding our understanding of how they continue to serve as barriers in achieving health equity.
Racism and Health Outcomes
Jones challenged the audience to identify how racism can impact health outcomes. “How does this structural inequity create differences in prevalence of attention deficit hyperactivity disorder, asthma, obesity, infant mortality, and cancer mortality rates?” she asked. To understand this, she defined three levels of racism: institutionalized racism, personally mediated racism, and internalized racism.
Institutionalized racism, said Jones, is the constellation of structures, policies, practices, norms, and values that collectively result in differential access to the goods, services, and opportunities offered to society by race. This type of racism, Jones argued, does not require an identifiable perpetrator because it has been institutionalized in laws, customs, and norms. It often manifests as inherited disadvantage or the reciprocal inherited advantage. Examples include access to power and material conditions, such as access to quality housing, educational and employment opportunities, income levels, and access to medical facilities and services—all of which impact health. Specifically, Jones noted the disproportionate placement of toxic dumpsites or bus transfer stations in communities of color. Institutionalized racism, she continued, involves acts of doing, acts of commission, acts of not doing, and acts of omission, as well as inaction in the face of need.
Jones described the second level of racism: personally mediated racism, which occurs through differential assumptions about abilities, motives, and intents of others by race and differential access or treatment based on these assumptions. Examples may include physician disrespect in not offering the full range of treatment options based on assumptions around affordability or health literacy; shopkeeper vigilance; waiter indifference; and police brutality. She noted these and examples of everyday racism are micro-aggressions—subtle communications of disrespect—that can elevate blood pressure in communities of color. Another example is within the education system: if a teacher thinks children are unable to learn just by the color of their skin or their family’s income level, they may be placed on a track where they will not know or have the opportunity to live up to their potential. Jones said personally mediated racism can occur through
acts of doing or acts of commission, as well as acts of not doing or acts of omission, and these acts may be either intentional or unintentional. “One does not have to have intended to do something racist to have had a racist impact,” Jones stated.
Jones explained the third level of racism: internalized racism, which is the acceptance by members of stigmatized races of negative messages about their own abilities and intrinsic worth. She cited an example in which a black man who needs a lawyer might seek a white lawyer over a black lawyer. This third level of racism, Jones expounded, is the deeply internalized myth of white superiority, in which members of stigmatized races accept the limitations placed on them. These limitations may lead to self-destructive behaviors impacting health, such as not registering to vote or not voting even though registered.
Jones dissected the interconnection of social class and racism. People of color, she noted, are overrepresented in poverty while white people are overrepresented in wealth. She noted that this is not happenstance, and that for each marginalized, stigmatized, or oppressed population, there has been some initial historical injustice. For example, American Indians experienced forced removal of their land and a near genocide, and African Americans experienced an initial kidnapping and were subjected to slavery, all of which have had long-lasting impacts on contemporary structures and policies that have hindered opportunities for economic growth and optimal health.
The Gardener’s Tale
Jones recounted a story she has used in other settings (for a fuller account, see Jones, 2000). She stated that its intent is to illustrate the three levels of racism and argued that institutionalized racism needs to be addressed in order to address the other two levels of racism.
When Jones moved from New York to Baltimore, she and her husband bought their first house. The house had a porch on which were several flower boxes. As spring approached, she and her husband decided to plant marigold seeds.
Noticing that some of the flower boxes were already filled with soil while others were empty, they went to the gardening store and brought home new soil. They filled the empty flower boxes with the new soil and placed an equal number of marigold seeds in each box—some seeds were planted in the new soil, while others were planted in the old soil. Several weeks later, Jones was surprised to see that some boxes were full of tall and vigorous flowers while other boxes grew scrawny and scraggly flowers. She realized that the potting soil she and her husband bought was rich, fertile soil, which allowed the seeds grown in that soil to sprout and grow to
their full potential, whereas the old soil turned out to be poor and rocky. The strong seeds in the poor, rocky soil struggled to make it to half their potential, and the weak seeds died.
Jones continued the story by introducing the gardener. The gardener knows which flower box has rich, fertile soil and which box has poor, rocky soil. For purposes of her story, the gardener has one set of seeds that will produce red blossoms and another set that will produce pink blossoms. Jones noted that in this tale, the gardener prefers red to pink.
Given that preference, the gardener plants the seeds that produce red blossoms in the rich, fertile soil and the seeds that produce pink blossoms in the poor, rocky soil. As expected, the red seeds sprout in the rich, fertile soil; the pink seeds struggle to sprout, and many die. These flowers then go to seed, and year after year, the cycle repeats itself. Ten years later, the red flowers are still vibrant and thriving, and because of this, Jones stated, the gardener is affirmed in the decision to prefer red blossoms to pink.
Jones suggested that the separation of the seeds into two types of soil represents historical injustice, and the flower boxes that keep the soil separated mark the institutional racism within contemporary structures that perpetuates these injustices. She stated that inequities are perpetuated through inaction in the face of need. Personally mediated racism, she said, is represented, because when the gardener thinks red is more beautiful and healthy, she leaves the red flowers to grow but plucks the scrawny and scraggly blossoms off the pink flowers before they can go to seed. And when the pink seeds blow into the rich fertile soil, the gardener pulls them out before they are able to sprout, which Jones likened to anti-affirmative action efforts. Internalized racism, Jones continued, is represented by the red flowers’ inability and unwillingness to understand or acknowledge that they benefit from the richer, more fertile soil. Internalized racism is also represented by the pink flowers wishing that they themselves could be red; the pink flower has internalized that red is better than pink.
Jones asked the audience about how to set things right in the garden (see Appendix C for discussion questions on The Gardener’s Tale). To change the situation, Jones reinforced the need to address institutionalized racism by breaking down the boxes; the poor, rocky soil should be enriched so that it becomes rich and fertile. This would allow the pink seeds to flourish as the red blossoms have. By addressing institutionalized racism, this intervention may also address internalized and personally mediated racism, leading to greater outcomes for the pink flowers.
Jones stated that racism is not a miasma or a cloud that people are unable to grasp, but rather a system with identifiable mechanisms that
exist within societal structures, policies, practices, norms, and values. It is the responsibility of those with a seat at the decision-making table, Jones argued, to look around and see who is not there, rather than represent their interests. The goal is to get them to the table, she stated.
Health equity, Jones said, requires assurance of equity for all people. Long-term investments in communities are needed to ensure conditions for optimal health for all people. Jones asked how health equity, which requires valuing all individual populations equally, can be achieved. Her solutions included the need to rectify historical injustices, provide resources according to need, and bring unrepresented voices to the table. She further emphasized taking a historical lens to provide insights into how to resolve perpetuated injustices.
Jones closed her keynote by stating that populations of people with equal potential are not being manifest. She called for (1) investing in opportunities based on need and understanding the uneven balance in investments and the need to patiently wait for generational outcomes; (2) connecting with the past and historical injustices; (3) disposing of the myth of meritocracy; and (4) addressing the unevenness of the playing field that has been structured and maintained by racism, heterosexism, and other systems of structured inequity.