Disability and Healthcare: Systematic Policy Failure and the Continuing Legacy of Eugenics & Racism

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On Tuesday, October 19th, 2021, the Center for Ethics Education hosted a Zoom conversation on the topic of “Disability and Access to Healthcare.” This was the second installment of the Center’s Fall 2021 discussion series on Advancing Health and Social Justice. The two speakers present were Dr. Brooke Ellison, PhD, MPP and Dr. Arrianna Planey, PhD, MA. Professors Ellison and Planey engaged in discussion on how social perceptions can influence how we think about and gain access to a healthy life.

Brooke Ellison, PhD, MPP
Dr. Brooke Ellison is an associate professor for the Center for Medical Humanities, Compassionate Care, and Bioethics at Stony Brook University. There, she is also Interim Program Director of the PhD program in Health and Rehabilitation Sciences and Co-Director of the Advanced Certificate in Health Care Management. She received her BA in Neuroscience and MA in Public Policy from Harvard University. After completing her PhD in Sociology from Stony Brook University, Dr. Brooke has been a member of multiple boards which deal with the issues of ethical stem cell research and policy.

Dr. Brooke’s talk, “Disability, Science and the Policy Outcomes,” focused on the history of the linkages between science, medicine, social perception and policy in the United States. She began by explaining how public policy and scientific progress are inextricably linked. Some of her examples included the race to the moon, the development of nuclear technology, and Project MKUltra. She continued to highlight that although we most often prefer public policy to be guided by science, we still see cases where science is used to create “unfortunate policy.”

According to Dr. Brooke’s research, the progressive era in the United States brought not only social activism and political reform, but also the heightening of eugenics. “Genetics research was really coming to fruition […] Eugenics promised to eliminate social problems by breeding a race of healthy, moral, and industrious individuals.” This, however, contributed to the marginalization of individuals regarded as “inferior.” Disabled people, alongside people of color, were then regarded as a threat to the abled white society. As the faith in science increased, so did the desire to have it influence public policy. Dr. Brook argued that the institutionalization of the medical definition of disability across multiple practices, such as social work and policymaking, made disabilities a social problem to be dealt with. This change in social perception consequently influenced how disabled people were negatively affected by policies intended to be progressive. The Works Progress Administration, for example, was developed in 1935 to alleviate massive unemployment following the Great Depression. Yet, people with disabilities suffered through massive discrimination by work relief agencies. Another way in which we can see how social perceptions changed attitudes towards people with disabilities is in the increase use of language such as “the crippled” and “the feebleminded.” Today, Dr. Brooke argues, conversations about bioethics still emerge from the medical model of disability. By this reason, she claims that bioethicists have failed to “look at disability as a social construct and part of humanity.” She demands a greater sociocultural orientation in order to fix this issue and to stop regarding a disabled life a substandard life.

Arrianna Planey, PhD, MA
Dr. Arrianna Planey is an associate professor for the Department of Health Policy and Management at the University of North Carolina Gillings School Of Public Health. She is also a fellow in the Cecil G. Sheps Center for Health Services Research. She received her BA in History at the University of California Berkley and her MA in Social Science is from University of Chicago, followed by her PhD in Geography from University of Illinois at Urbana-Champaign. Her research focuses on spatial analysis, access to healthcare, social epidemiology, and rural healthcare.

Dr. Planey’s talk, “Ethical and Social Justice Dimensions of Disability and Healthcare,” focused on the intersection between healthcare access and disability. She began by explaining how current systems to measure the contributions for social health policies only take into account what is considered the “normal” body. For example, Planey claims that the Robert Wood Johnson’s Foundation model to estimate the contribution for health behavior, clinical care, social economic factors, and physical environment to population health is missing four key elements. The model does not account for (1) federal and local funding, (2) disability rights enforcement, (3) inequities in access to care, and (4) root and fundamental causes. Furthermore, most models of care used today are based on an acute care analysis rather than a chronic one. Thus, failing to provide an accurate model to measure the health of those experiencing long-term chronic conditions. “Ableism is baked into decision making heuristics”. For instance, Planey said, the DALY Measurement (Disability Adjusted Life Years) measures diseases burden and life expectancy in economic terms and cost-effectiveness.

Additionally, the ways in which we define concepts such as population or market could also contribute to an inequitable health policy development. Market is defined in the health industry as those who live in geographic proximity to a hospital which fails to include all of the people who rely on the hospital’s resources. This type of definition fails to include rural patients who have to travel more than 25 minutes to access the nearest hospital. One way in which Dr. Planey encourages us to push the boundaries of what we mean by “accessible” is by thinking of it in 5 distinct terms: (1) availability as the adequacy of the supply of providers in relations to the need, (2) accessibility as the distant to care alongside system-level barriers to service use, (3) accommodation as the degree within a healthcare system enables patient entry into care, (4) affordability as the financing, reimbursement, and patient-cost associated with accessing services, and (5) acceptability which is the degree of agreement between patient and provider expectations towards care.

Another popular framework which Planey identifies errors in is the IHI Triple Aim Initiative. This framework describes an approach to optimize health system performance [1]. However, it fails to address access to care, as well as the fact that public health practitioners define populations differently from healthcare systems. Most importantly, the Triple Aim framework designates reducing per capita cost as one of its aims. Planey warns that per capita cost does not measure the uneven burden of healthcare cost across the income gradient nor the inequitable access to care. After discussing affordability dimensions of access, Planey discussed the book, The Economization of Life by Michelle Murphy, PhD, which “describes the twentieth-century rise of infrastructures of calculation and experiment aimed at governing population for the sake of national economy, pinpointing the spread of a potent biopolitical logic: some must not be born so that others might live more prosperously.”

Dr. Planey ended her discussion with an important reminder that racism is imbedded in how our systems developed and is something we always need to consider when thinking about these issues and asking questions like, “Who did we define as part of the health population before?” and “How does that affect how we define it today?” She further explained that ”we can’t really talk about disability, health social policy, and eugenics without talking about race. Because so much of the history of disability policy and eugenics is tied up in racism and how we understand disability is inseparable from how race has been constructed”.

[1] “The Triple Aim: Care, Health, and Cost: IHI.” Institute for Healthcare Improvement. Accessed December 2, 2021. http://www.ihi.org/resources/Pages/Publications/TripleAimCareHealthandCost.aspx.

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