This post is part of a symposium from speakers and participants of Northeastern University School of Law’s annual health law conference, Diseases of Despair: The Role of Policy and Law, organized by the Center for Health Policy and Law.
All the posts in the series are available here.
By JoHanna Flacks
If despair is the disease, what is the remedy? I was privileged to participate in a panel with colleagues from the medical-legal partnership (MLP) movement at a Diseases of Despair conference convened by Northeastern University’s School of Law in April. We were invited to share how MLP approaches can answer this question broadly by helping to identify and implement interventions that show promise as despair antidotes or – better yet – antibodies that can prevent despair’s onset.
While hope is despair’s antonym in common usage, the idea of “resiliency” has taken root among healthcare and human service teams as a key quality to cultivate among, for example, survivors of adverse childhood experiences (ACES) who are at risk of poorer health and well-being in the absence of buffers from the toxic stress of these traumas.
Resiliency in this context is a key counterbalance to risk factors for toxic stress, and is featured among several protective factors that serve as the foundation of the Strengthening Families approach. This framework elevates a positive alternative to the traditional child abuse and neglect prevention frame with a focus on increasing family strengths around:
- Parental resilience
- Social connections
- Knowledge of parenting and child development
- Concrete support in times of need
- Social and emotional competence of children
“Diseases of Despair” is a relatively new term, invoked primarily to date around substance use disorders, as well as suicide and violence. Yet the concept has deep roots in social determinants of health (SDOH) scholarship. The World Health Organization defines SDOH as “the conditions in which people are born, grow, work, live, and age, and the wider set of forces and systems shaping the conditions of daily life.”
These conditions of daily life can generate hope or despair, they can build or deplete resiliency, and they can reflect a culture of respect or disrespect for populations based on the degree to which different populations benefit from the inequitable distribution of features that promote well-being. Neighborhood “opportunity mapping” is one way of crystallizing this concept. The use of this research method has contributed to a widely acknowledged conclusion: ZIP code predicts health status better than genetic code does.
While substance use, suicide, and violence typically are classified in the behavioral health domain, another subcategory of diseases that disproportionately afflict populations with health disparities should be included among Diseases of Despair: the experience of oppression itself as a determinative factor in the incidence and severity of disease.
Minnesota’s Department of Public Health Commissioner, Dr. Ed Ehrlinger, has commented in the context of substance use disorders and suicide that “[t]hese diseases and outcomes are brought on in part by a lack of hope, a lack of opportunity and a lack of paths out of poverty.” He goes on to explain that “[f]or communities of color, trauma caused by marginalizing policies and behaviors have affected generations,” observing that vast income inequality and other negative socioeconomic conditions “eat away at the resilience of the community.”
Indeed, the City of Boston—locus of the conference that convened this blog symposium—is experimenting with forthright acknowledgment of the relationship between racism and the buffering value of resilience by establishing an Office of Resilience & Racial Equity.
An alignment between Diseases of Despair and what could be termed more broadly Diseases of Structural Violence offers both a valuable caveat and a pathway toward progress.
If hope boosts resilience, false hope breeds despair. In other words, resilience is not just a state of mind but also a state of affairs. There is a high risk that viewing resilience as the primary antidote to oppressive conditions sites the solution to the problem within the victim rather than excising root cause(s).
Potentially capitalizing corrosively on a stereotype like “the strong black woman,” a resilience strategy that focuses on what an oppressed person can change in herself ignores the root of what will remain a persistent problem: the social conditions that are beyond her sole control, often by historical and structured design. With good reason, oppressed people are “sick and tired of being sick and tired.”
This remains the case more than fifty years after civil rights pioneer Fannie Lou Hamer made this oft-quoted declaration on December 20, 1964. It is not empowering to ignore injustice. It is irresponsible and disrespectful to ignore injustice, and disrespect depletes resilience. Further, it diminishes trust in an advocate.
Respect may be the most important action that answers the question posed at the start. And it is an answer from people, including Native American elders, speaking for themselves about their needs as they define them. It is also the reason that Justin Goforth, RN, who was an MLP leader for many years at Whitman-Walker Health’s Red Carpet program, has described the clinic receptionist as the most important link in the chain of service: because a patient who presents for the first time and senses disrespect at the front desk may leave and never turn back for HIV testing, treatment or legal care.
At the same time, though a person’s strength must not be used as an excuse to ignore the injustice that calls upon it, a person’s strengths are real and must be honored. This too is a feature of respect for a whole individual. A member of the workforce charged with SDOH screening and service responsibilities is at once a cheerleader, a coach, and a compassionate agent of reality. They level with a person about the daunting scale of obstacles, and honor the expertise of the person who has managed to engage despite those obstacles. Personal, family, and community-level strengths deserve to be counted and brought to bear in problem-solving planning.
Training in structural competency combined with strengths-based approaches to screening and problem-solving could be a way forward.
Laws and public policies afford some, but not full, relief for the panoply of health-harming social conditions. Meanwhile, front-line healthcare and human service workforces are emerging as our country’s SDOH “first-responders.” Those first responders cannot be presumed to have the diversity of tools on hand that are necessary to meet each patient at the precise intersection of experiences and social conditions that make up their health and disease ecosystem. Thus, cultural humility is essential for this work.
Structural competency skills can equip community health workers and their colleagues to be more incisive issue-spotters and can help show respect for (and thus earn trust from) a person asked to share very personal challenges. This is especially relevant when life may feel like a despair-inducing ratio of “a million appointments and no true friends,” as Executive Director Michael Botticelli of the Grayken Center for Addiction at Boston Medical Center reflected during his speech at April’s conference.
Concretely, a structurally competent approach to screening practice may empower an Afro-Latinx patient to name racism as a factor in a thus far unsuccessful housing search when the encounter is facilitated by a Latinx doula and where the points of cultural congruence between doula and patient may include gender and language but not necessarily race.
A structurally competent conversation about housing search may create a safe space in which a patient can broach her experience of racism, which has a bearing on rights under fair housing laws. If due care is not taken to create such a space, a home-seeking pregnant woman may not feel comfortable sharing the root of her concerns and thus may miss a valid opportunity to preserve an affordable housing resource: there is a “use it or lose it” window to sign a Section 8 lease, and exercising rights in response to fair housing violations may extend the expiration date.
This represents a crucial fork in the road toward housing stability: professional testing results indicate that Black, Latinx, and transgender people experience discrimination in the housing market even in the 21st century, and the cost of rent without a subsidy is utterly out of reach for low-income tenants. Practice informed by these facts—an example of structural competency—can improve patient experience and treatment of their SDOH.
What do we stand to gain by introducing this level of complexity into already-challenging conditions of SDOH screening, triage, and problem-solving?
First, each of us gains the wisdom of acknowledging our own privilege. Ignoring the complexity of intersectional experiences of oppression is a privilege enjoyed only by those who are not oppressed.
Second, we gain the opportunity to prevent some of the most devastating Diseases of Despair (and Structural Violence): the evidence is mounting that if a pregnant Black woman is offered acknowledgment of the burdens under which she is still expected to resile, she is more likely to maintain good health herself while carrying her baby to full term: an improvement on the status quo culture of maternal health in which most of her treating clinicians will know nothing of her experience as a Descendant of Africans Enslaved in the United States (DAEUS).
Worse, they will not know how they may contribute to its weathering impact on her and her pregnancy (notably regardless of socio-economic status). Culturally congruent doulas in particular can offer this acknowledgment.
Through a public health lens, our goal must be to prevent both Diseases of Despair and Structural Violence. This calls for the most upstream of approaches at the culture and policy level to achieve social justice.
Meanwhile, secondary prevention requires us to detect Diseases of Despair as early as we can in their development, and in turn to identify risks and strengths that can be leveraged protectively.
In that vein, through my work with MLPB I was honored to co-author with Renee Boynton-Jarrett, MD, ScD a paper published this past January by the Center for the Study of Social Policy, “A Strengths-based Approach to Screening Families for Health-Related Social Needs.” We hope this resource can serve as a tool for organizations and workforce members invested in the “pathway” to progress described above.
Other teams across the country are working on complementary approaches from which the field has much to learn, such as Empathic Inquiry. Coupled with a structurally competent approach, a strengths-based approach to social screening practice shows respect for people, which is a primary lever for fostering the genuine hope that can help transform a downward spiral into resiliency.
JoHanna Flacks is the Legal Director at MLPB and in this role links MLPB’s workforce capacity-building services to broader opportunities to inform public policy in ways that will reduce health disparities. Before joining MLPB, JoHanna was in private practice, and provided pro bono services to the Cape Cod Anti-Discrimination Task Force in its successful campaign to establish the Barnstable County Human Rights Commission. Prior to that, she served as Assistant General Counsel for the Boston Public Health Commission, and Senior Investigator for the Boston Fair Housing Commission. She began her career as a labor-side employment discrimination litigation associate. JoHanna graduated from the University of Oklahoma College of Law and Brandeis University.
This symposium is published in partnership with: