Advocating for Health Care Access

Anthropologists challenge threats to health care coverage for immigrants and people living with disability in the United States.

The election of Donald Trump has signaled profound impacts to immigration, health, and social welfare policies in the United States. In a series of steps utilizing his executive powers, President Trump has kept his bold campaign promises to toughen border security and free health care markets from government oversight. He has issued tough restrictions on immigration and rolled back requirements that employers offer insurance covering birth control. His 2018 budget proposal and tax plan call for massive cuts to the social safety net, including food stamps, Medicaid, and the Temporary Assistance for Needy Families program.

The Trump administration has threatened to significantly reduce coverage for immigrants and people with disabilities, violate their right to live in our communities, and undermine decades of state and federal initiatives to rebalance spending towards community-based care.
In this new political landscape, uncertainty over the future of health care and immigration continues to deepen. As anthropologists, we have a have an important role to play in documenting the profound impacts of these policies on the lives of millions, particularly the sickest among us who need coverage the most. This requires us to move beyond scholarship and critically engage in health advocacy work through active participation in community and grassroot coalitions, local and national health initiatives, and interdisciplinary collaborations within and beyond the academy to curb repression and prevent the systematic targeting of particular marginalized groups.

For close to two decades, we have conducted research on policy, governance, and inequalities in Latin America, the Caribbean, and the US. More recently, our research has focused on growing disparities in health and health care access in the US among highly vulnerable groups such as non-citizen immigrants and people with disabilities. Such engagements have led us to work alongside a variety of stakeholders including activists, front line providers, community members, and policy makers to advocate for change in immigration and health policies that would improve access and quality of care in efforts to improve individual and community well-being. We also have increased our public engagement activities through local partnerships, disseminating our work and advocacy efforts on social media, newspaper editorials and op-ed pieces, policy briefs, and press releases.

Immigration and rural landscapes of care

Sangaramoorthy partnered with immigrants, local advocates, and organizations on the Eastern Shore to bring attention to the surprising scope of new immigrant populations living and working along Maryland’s Eastern Shore and to raise concerns about how an already overburdened rural health care system is struggling to meet basic needs. She has written extensively about women like Beatriz, a widowed mother of four from Hidalgo, Mexico who has returned to work for the same crab processing plant for seven years with an H-2B visa, a US government program that allows employers to bring foreign workers to the US to fill temporary nonagricultural job. Several hundreds of Mexican women like Beatriz migrate through these temporary guest worker programs to work in Maryland’s globally renowned crab industry located on the remote and rural Eastern Shore region.

For Beatriz and other migrant crab workers, injury and illness brought about by living and working conditions are a temporary but inevitable part of daily working life, “Right now we’re well but you could get sick just like that. So, I’m always worried. We will all eventually develop something or another [while here]. ”

Mobile health clinic for immigrant laborers on the Eastern Shore. Emilia Guevara

Picking crab meat at a pace fast enough to meet the daily poundage quotas set by supervisors, women experience dry skin, cuts, scrapes, and rashes on their arms and hands. Vapor generated by cleaning and steaming crabs, cuts from knives and crab shells, and constant contact with containers filled with salty water, bleach, and other chemicals often exacerbate or precipitate existing chronic issues among women such as allergies, chronic back pain, acute pain, and myalgia.

The crab pickers also experience psychological injuries including heightened levels of anxiety, depression, and stress stemming from extreme social isolation. Despite these serious issues, these women have very little access to care. They rely on the weekly mobile clinic during the summer for triage and basic medications and the local federally qualified health center 25 miles away for more serious medical issues. Women paid a flat $15 for an entire season of basic preventive care for these services, which also covered some prescriptions. Often, the women are in need of more specialty or urgent care. With the regional hospital located 30 miles away, women incurred massive debt for emergencies.

Although women’s working and living environments vary depending on the employer, they are socially isolated and heavily reliant on employers for food, housing, and health care. Additionally, conditions of legal precarity render them susceptible to a number of social, political, and economic disadvantages, including poor health outcomes and lack of access to health care.

Through engaged partnerships with frontline providers and immigrant advocates, Sangaramoorthy has documented the multiple barriers to health care faced by Mexican, Haitian, and Central American immigrants working in agricultural, poultry, and seafood industries and the critical challenges facing a small, aging group of health and social service workers caring for immigrants in the region. Next, she will work with collaborators to understand whether the provider capacity in rural Maryland can adequately serve newly insured individuals under the Patient Protection and Affordable Care Act (ACA) and Medicaid expansion. Specifically, she will be examining how recent immigration and health care policy developments influence the complex pathways to mental health care for non-citizen immigrants on Maryland’s Eastern Shore.

In addition to publishing in academic journal articles and presenting at conferences, Sangaramoorthy has been disseminating her findings on the challenges faced by rural health care systems and immigrants to a broader public, through an online blog, podcasts, newspaper editorials and op-ed pieces, press releases, and public meetings with local organizations. She is also partnering with local organizations with state and national reach to produce policy-relevant products including research reports, policy briefs, and commentaries as well as future research proposals.

By bringing attention to immigrant and provider perspectives and the institutional capacities of rural settings like Maryland’s Eastern Shore, Thurka is working to help the public and policy makers understand how some proposals to cut public spending on health care will have long-term negative impacts on entire communities, native and immigrants alike.

Disability rights in the US heartland

During a May 2017  protest in front of the Wisconsin state capitol building, Olson met several parents she hadn’t seen at previous hearings or advocacy events. They weren’t the familiar faces who pushed her commentary on Senator Johnson’s proposed legislation forward on social media, or those who stood with her and colleagues from the medical school outside of his office. These parents, like Olson, were concerned about cuts to the Katie Beckett Program which provides support to families of children with disabilities independent of income. One mother, accompanied by her six-year-old daughter in a power wheelchair, told Olson she joined the demonstration: “Because it is better than sitting at home, fearing the news each day. Thinking that I may have to give up everything that I’ve known.” Over 74 million Americans receive insurance through Medicaid or the Children’s Health Insurance Program, including one in five children. For many people with disabilities, access to Medicaid is essential to participation in their communities.

Madison protest. Krisjon Olson

When Trump clowned a reporter who appeared disabled, many in the public and within disability rights organizations where Olson was conducting research labeled him a cruel and failed candidate. Olson, on the other hand, found his blunders to mirror jokes made by extremist leaders like Slobodan Milosevic, Félicien Kabuga, and Efrain Rios Montt who were known to use scapegoating humor to emphasize interethnic differences, evade responsibility for violence, and reinforce their own authority. Olson, who has written and taught on topics of nationalism, violence, and exclusion in Guatemala, Bosnia, and Rwanda over the past two decades, felt the lessons from this scholarship were critical to understanding the eugenics and extremism emerging in the US. As a new resident of Wisconsin, a critical swing state and home to powerful political leadership for the current administration, Olson witnessed deep structural inequalities facing economically disadvantaged youth and children with disabilities.

Across the US millions of people have spent the past year not knowing how they will access the medical system as Congress debated repealing and replacing the Affordable Care Act. Yet, with the far right movement on the rise, an even greater number of people in our communities fear seeking medical care at all. Just after Trump’s election in 2016, Olson met a young woman through her disability advocacy in Wisconsin. Leigh (a pseudonym), had not seen a primary care doctor since her release from the foster care system five years earlier. Like Olson, Leigh was born with cerebral palsy. Leigh feared that she, like many individuals with disabilities, would be pushed into a nursing home if she sought physical therapy. That ended when Leigh fractured her femur a few months after the two met. She received care in a rural emergency room and was then sent for rehabilitation at a nearby city facility where she has been stranded ever since. Many people, like Leigh, avoid medical care for good reasons. Struggles with transportation, access to groceries, and affordable housing consume daily life. As anthropologists, we often see the people that doctors do not.

That is one of the reasons why Olson, who works at the medical school that educates doctors across the state, partnered with the Wisconsin Board for People with Developmental Disability (WBPDD). There she joined a subgroup of self-advocates, caretakers, and activists who have worked to oppose efforts to limit Medicaid. Medicaid pays for more than half of the births in Wisconsin. It is the largest health care payer in the state, covering more than 20 programs for people with disabilities. Olson testifies with members of the WBPDD on national and local legislation and submits white papers on the impact changes to health care will have on children. She provides research for, and targets key community members with, opinion pieces and  multi-media spots that explore the impact Medicaid has on the lives of people in Wisconsin.

Olson has argued that this type of cut to our health care system would cause immediate, preventable, harm to people with disabilities. She and her partners, through their multi-sectoral alliance, are opposing attempts by the current administration to change how people with disabilities live and die. In doing so, they have galvanized people with disabilities, parents, teachers, and medical professionals. Coalition building between healthcare providers and recipients has provided Olson with valuable opportunities to channel her research and engagement. In the current political moment, understanding disability and health beyond diversity and consciousness-raising efforts can effectively block hazardous fanaticism and eugenics in our midst.

***

Although Trump has failed thus far in getting Congress to repeal the ACA, his primary health-care goal, he has taken several steps to undercut it. Growing uncertainty about the future of health care has left many advocates struggling to respond. Anthropologists have ample opportunities to contribute and participate amidst this crisis. From our perspective, anthropologists must engage in multi-coalition work with advocates, health researchers, and frontline providers to counter such legislative and administrative actions that are predicted to have catastrophic results for countless individuals and their families.

Despite the discipline’s complicated history in engaging with matters of public policy, we must make sure anthropological perspectives are included in discussions related to the material effects of health care reforms as well as the ideologies that make them seem practical. In the past year, we’ve made explicit efforts participate in policy debates that affect health and healthcare in the regions where we live. We’ve worked students to help them understand how particular ideologies make discrimination, ethnic profiling, and suffering necessary and normal. We’ve partnered with health care and consumer organizations who advocate on behalf of people with chronic, serious, and life-threatening diseases to inform policy makers about the unique needs of immigrants and people living with disabilities. The Trump administration has threatened to significantly reduce coverage for immigrants and people with disabilities, violate their right to live in our communities, and undermine decades of state and federal initiatives to rebalance spending towards community-based care. Anthropologists must join with others who are on the front lines in order to create a health care system that benefits all Americans.

Thurka Sangaramoorthy is assistant professor in the Department of Anthropology at the University of Maryland. She is a medical anthropologist whose research is focused on optimizing health outcomes and access to affordable healthcare for underserved communities, specifically related to sexual health.

Krisjon Olson is assistant professor in the Department of Pediatrics at the Medical College of Wisconsin. She is a medical anthropologist whose research is focused on children and death, including pediatric life prolongation, the impact of childhood inequalities, disability, and child health policy.

Cite as: Sangaramoorthy, Thurka,  and Krisjon Olson. 2018. “Advocating for Health Care Access.” Anthropology News website, January 24, 2018. DOI: 10.1111/AN.744

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