The United States often refers to itself as a ‘post-racial’ society, using a Black President and other superficial markers as evidence that it is a nation no longer plagued by racism, by racial inequalities, by white supremacy, and by the dominance of white culture, Whiteness, and ‘white is right’ thinking.
Any person of colour or nonwhite person living in the United States could tell you otherwise, of course, as could any white person willing to pay attention and observe societal and structural imbalances. This is a nation where racial injustice is a pernicious and pervasive evil, one that allows young Black men to be gunned down in the street for holding bags of Skittles, to be executed on train platforms by transit police. This is a country that allows Indigenous women to be raped at a rate 2.5 times higher than women of other races, that allows trans Latinas to be raped, beaten, and murdered. This is what a ‘post-racial’ country looks like.
Huge disparities in terms of what kind of health care you can access, and what kinds of health care outcomes you receive, fall out along racial lines in the United States.
Disabled people of colour live at a horrible and painful intersection of racial hatred and ableism, and when these factors collide, the results are, as one might expect, catastrophic. Notably, statistics show profound health disparities along racial lines, the consequence of racist policy, access to health care, and more (.pdf.): “The incidence of disability is significantly higher among working-age African Americans (17 percent) and among Native Americans (22.5 percent) as compared with 12.6 percent among whites.”
Disability in pop culture is most commonly represented by the white man; the ‘average’ disabled person is iconically represented in the form of ‘wheelie blue,’ who reads to many socialized to see white men as the default as a white gentleman using a wheelchair. The idea that disability intersects with gender, with sexuality, with class, and with race is deeply alien and sometimes threatening to many people, including those in the health care system.
Huge disparities in terms of what kind of health care you can access, and what kinds of health care outcomes you receive, fall out along racial lines in the United States. Yet, they don’t have to. Despite knowing about race-based healthcare inequality, the United States has made a calculated decision to keep things this way, instead of tackling the structural problems that leave Black women dying for want of basic breast care, that leave Latino men struggling with diabetes complications, that leave Indigenous women with undertreated chronic illnesses.
The Breast Health Initiative (.pdf) run by the Cambridge Health Alliance drew upon striking data illustrating profound racial disparities in access to care and outcomes for breast cancer patients, focusing on cisgender women. A 2004 study showed that some women were waiting longer than others for mammogram appointments, despite a community initiative to raise awareness — and that the fall in appointments and awareness was especially dramatic after a grant providing multilingual services expired. Those involved in the study used concrete data on the known issues with their screening programmes to identify areas of concern and improve their screening rates: and they did.
At Sinai-Grace Hospital in Detroit, Michigan, doctors noticed profound disparities in cardiac care for Black men (.pdf). In an impoverished city where over half of the residents are ‘medically underserved’ and nearly 90% live with one or more chronic illnesses, medical care can be complex, and critical. Disparities in health outcomes and the identification of health conditions are of particular concern in such settings.
The Sinai-Grace team found that older Black men in Detroit were dying at a much higher rate than their counterparts in the rest of Michigan, creating a striking disparity within their own racial demographic that was even more appalling when compared with overall health outcomes for the Black versus white communities. Consequently, they initiated changes in protocol and data collection at their hospital to shrink the gap: and they did.
Meanwhile, in Colorado, Kaiser Permanente doctors acted to address the unusually high rates of diabetes among the Latina/Latino population of the region (.pdf). Relying on data on their community, doctors and researchers identified populations most at risk of not adhering to diabetes treatment and thus developing severe complications of this chronic illness, and they used outreach to reduce disparities in health outcomes: and they did.
These case studies on disparities in health care outcomes merely probe the surface of research being done across the United States to identify at-risk populations and determine how to address the imbalances they face while navigating the health care system. Some doctors and care providers, at least, are aware of the problem and are working on it, focusing on the identification of specific community-based problems and addressing said problems to improve outcomes.
But this is about so much more than a community-by-community fix, although this work on the ground is critically needed to save lives and improve outcomes now, when patients need it. To take this issue on in the larger sense, however, requires adopting an aggressive anti-racist approach to healthcare, to reform an industry that has been racist from its inception.
In the 1850s, the bogus diagnosis of ‘drapetomania’ was developed to pathologise the desire for freedom; now slaves fleeing captivity were sick, and there was something wrong with them. This was not the first or the last time that resistance to oppression and reactions to racism would be pathologised.
Physicians and researchers historically used bad science to label slaves as less than human, as a species different than that of white people. They argued that people of colour and nonwhite people didn’t experience pain and emotions as white people did; particularly in the United States, such arguments were used for wrenching Black families apart. The Black slave who was devastated over being treated as breeding stock and torn from her children was likened to an animal, or, worse, an unfeeling object.
In the 1850s, the bogus diagnosis of ‘drapetomania’ was developed to pathologise the desire for freedom; now slaves fleeing captivity were sick, and there was something wrong with them. This was not the first or the last time that resistance to oppression and reactions to racism would be pathologised; as Black men rebelled in the 1960s, suddenly the entire diagnostic pathway for schizophrenia shifted, turning it into a Black disease — the ‘protest psychosis.’
Meanwhile, communities of colour were being used for unsupervised and unethical experimentation. Henrietta Lacks’ cells were taken without permission and used in countless medical discoveries worth billions of dollars. The Tuskeegee Airmen suffered for a thought experiment. Puerto Rican women experienced severe complications so white women could have a birth control pill.
At the same time, low-income communities of colour were becoming informal testing grounds for environmental pollution. This persists today, where companies and governments are more likely to site polluting manufacturing facilities, landfills, and hazardous waste sites in or near such communities. Known as environmental racism, this practice puts communities at a much higher risk not just for serious health problems, but for developmental disabilities.
Today, outdated, inaccurate, and flat racist notions within the medical establishment harm communities of colour. Disparate health status and outcomes are the result of a confounding of factors, among which are: the class inequality that keeps people of colour, particularly women, poor; the everyday toll of racism, now understood to have deleterious health effects; racism in health care leading to delays in screening, diagnosis, and treatment; racist policies and attitudes such as treating women of colour with chronic pain as ‘drug seekers’ and denying them adequate pain management; and racist underpinnings of medicine, like the persistence in using a white, male ‘model patient’ in pathology, which leads to missed diagnoses and a fundamental misunderstanding of the progression of disease in many minority communities.
We estimate that in 2009, disparities among African Americans, Hispanics, and non- Hispanic whites will cost the health care system $23.9 billion dollars. Medicare alone will spend an extra $15.6 billion while private insurers will incur $5.1 billion in additional costs due to elevated rates of chronic illness among African Americans and Hispanics. Over the 10-year period from 2009 through 2018, we estimate that the total cost of these disparities is approximately $337 billion, including $220 billion for Medicare. We also estimate the impact on these costs of the dramatic changes in the demographic profiles of African Americans and Hispanics that have been projected over the coming decades. We find that even without taking into any account projected growth in per capita spending, these annual costs will more than double to $50 billion by 2050 as the representation of Latinos and African Americans among the elderly increases.
These numbers are truly staggering, and evidence of the depth of the problem; race-based health care inequalities nip at the heels of minority communities from birth (with much higher neonatal mortality rates for children born to women of colour) to death. Thanks to these disparities, the United States is spending and will spend billions in stopgap measures, when it could far more cost effectively fight the disparities that are causing the problem.
This, however, requires tackling racism in the United States head-on, admitting that racism is a problem, that specifically that racism in health care is a persistent social issue. Furthermore, it involves coming to a new understanding of how injustice works.
The Center for Medicare Advocacy discusses the shifts needed to strike at the root of healthcare inequalities in the US:
The key to understanding and eliminating racial and ethnic health disparities is to acknowledge that they are not the result of individual behaviors. Instead, poorer health outcomes and ethnic and racial disparities in health are the result of social determinants of health care status. Therefore, the elimination of health care disparities requires solutions based on social justice.
Social justice is the fair distribution of society’s benefits, responsibilities and their consequences. It focuses on the relative position of one social group in relationship to other social groups in society, as well as on the root causes of disparities and what can be done to eliminate them. Thus, eliminating racial and ethnic health disparities may necessitate altering social policies, social systems and social institutions in order to remove unequal treatment and outcomes in the United States’ health care system.
In other words, the United States must abandon ‘bootstraps’ rhetoric and focus on the fact that in order to adequately address the huge disparities within the system, it must first acknowledge that this system is socially, not individually, based. This requires throwing over the cult of individual responsibility that has shaped thinking and attitudes in dominant cultures within the United States for centuries, and it is a frightening thought to those in power.
This is a fight that involves advocacy in numerous areas. Some are working legislatively to target specific disparities, while others are spearheading community-based health programmes to tackle the problem. Others take to the streets as well as the academy, to change the way medical education and the practice of medicine are performed and to build a better world for disabled people of colour. It is a fight that requires adopting a social justice model of health care, and a social justice-centered model of disability and disability rights, as well.
What is certain about the long, slow battle to change the demographics of disability in the United States and create truly equal access not just to health care but to good health outcomes is that this battle will not be won without foregrounding anti-racist thought, advocacy, and ideas. Without ‘playing the race card,’ this issue will never be resolved, because it is about our racist past and present — and while many white people in the US are uncomfortable with having to talk about race and engage with racism, ignoring the problem doesn’t make it go away.
Image: An Ojibwa woman dances at a powwow in Wisconsin, Amy Puzia.