My research falls at the intersection of science and values and philosophy of disability, and I also have an ongoing interest in the epistemology of measurement. I began my philosophical journey studying the epistemology of measurement in health care, specifically exploring ethical and epistemological issues with quality of life measures. These measures attempt to quantify the well-being of persons with chronic illnesses and disabilities. The nature of the good life is a perennial question in philosophy, and what precisely constitutes well-being remains poorly defined in the context of quality of life measurement. Yet despite their weak grounding in theory, for the past five decades, these measures have shaped health policy and guided patient care. The values implicit in these measures have also retrenched ableist attitudes toward disability, both among clinicians and health policymakers. Disabled people are presumed by measure developers, clinicians, policymakers, and the public to have a significantly lower quality of life than able bodied individuals, despite substantial first-person testimony to the contrary.
My postdoctoral fellowship with the Collaborative on Health Reform and Independent Living (CHRIL) gave me the freedom to explore issues in the epistemology of disability more fully, and to develop new research skills. Not only did I participate in writing two major grant proposals, I also learned how to conduct qualitative, interview-based research during my time with the CHRIL. I believe this skill set is especially important when doing philosophy with marginalized groups, as it gives group members a greater voice in my scholarly writing and keeps my work relevant and accountable to the concerns of the disability community. In a recent paper, I drew on interviews with seven CHRIL members to argue that disability researchers can build collaborative knowledge with the disability community. CHRIL members do this not only by being disabled themselves, but by engaging with the disability community through advocacy, caregiving, and conducting participatory research. I argued that a commitment to the well-being and empowerment of the disability community puts researchers in a better epistemic position to do quality work. Engaging with the disability community helps researchers form better questions, tackle problems that are of greater interest to the community, consider novel interpretations of data, and better translate knowledge in a way that is accessible to the community their research is meant to serve.
I also took part in the CHRIL’s “Disability Stories Project”, which interviewed approximately 30 disabled people about their experiences with health coverage and health care and asks how these factors contribute to independent living and employment in the US. I participated with two other researchers in the creation of a codebook for these interviews, and in the descriptive coding the interview transcripts. Together we identified 4 themes characterizing our interviewees’ testimony. First, participants noted the perverse incentives that made workforce participation difficult to maintain for disabled individuals in need of public health insurance; second, participants discussed the unremitting financial pressures that dominated their lives; third, participants described the administrative barriers they faced in attaining the social supports they needed; finally, participants explained how they drew hope and meaning from the independent living movement in the midst of struggle. I contributed significantly to the completion of the final manuscript, authoring sections on the theoretical framework for our analysis and the fourth theme. This article recently appeared in Disability & Society.
A fresh analysis of this interview data, coupled with a science and values critique of disability benefits administration in the US, forms the basis of a new, co-authored project. I am currently collaborating with Karen Colorafi, a nursing professor at Gonzaga University, on an analysis of the capitalist values that shape policy decisions around disability benefits. Policy makers, benefits administrators, and the general public operate under the assumption that disabled individuals are motivated to deceive in order to remove themselves from the work-based economy and enter the need-based, welfare economy. While “genuine” disability has long been considered a legitimate basis for leaving the work-based economy, disabled individuals have also faced perennial suspicions regarding their truthfulness. Deborah Stone, author of The Disabled State, argues that both historically and today those who seek public aid have been made to demonstrate the legitimacy of their claims through a variety of validation devices. When proving their need for social supports, disabled individuals are forced to rely on the supposedly objective testimony of medical professionals, who certify diagnosis and level of function. Yet even according to physicians themselves, these markers are notoriously poor predictors of employability, especially in an economy based more on service and technology than on manual labor. Secondly, beneficiaries are forced to undergo what amounts to a poverty test in order to receive aid. Only if beneficiaries are willing to live below the poverty line, receiving meager benefits and facing tight strictures on their allowable earnings, do they qualify for public health insurance in the shape of Medicare or Medicaid. Contrary to popular opinion, disabled individuals are usually willing and able work, but are prevented from doing so by attitudinal barriers, lack of workplace accommodation, and the bureaucratic strictures of US benefits policy. I argue that the capitalist values that currently shape disability benefits administration, and the common assumption that supposedly disabled individuals are motivated to deceive, should be subjected to critique, not only by society at large, but by disabled stakeholders themselves.
This fall, I am also working through a number of texts on administrative evil and bureaucratic violence, with an eye toward exploring the ways that efficiently functioning bureaucracies and the well-meaning people who staff them can cause significant harm to vulnerable groups. Examples include administrative functionaries who facilitated the final solution during the German Third Reich, as well as current bureaucratic systems in the U.S. (e.g. the criminal justice system and the health care system) that enforce and uphold a strict gender binary in ways that endanger the trans community. I hope to explore analogous systems of administrative violence that affect the disability community, and to ask whether disability benefits administration is one such system.
In a second upcoming project, I propose to conduct a study of issues related to reproductive justice for adults with disabilities. While both the WHO and the UN have affirmed the reproductive rights of adults with disabilities, disabled parents still face many social barriers. First, returning to my interest in philosophy of measurement, I will examine ethical and epistemic issues surrounding the use of parenting competency assessments for parents with disabilities. What values are implicitly encoded in these measures of parenting competency, and how are these measures deployed in practice? What role does the personal expertise and cultural competency of the evaluator play in the interpretation of outcomes? What sort of rhetoric surrounds the use of these measures in family court, and is that rhetoric justified? Second, in a further interview based study, I propose to examine the ways limits in our social imaginary affect our perceptions of the competency of disabled parents. How does our lack of imagination affect the ways we evaluate risk to children of disabled parents, and how does it limit our perception of disability gain in this context? Finally, how do master narratives about motherhood and disability inhibit the agency of disabled women and damage their moral identities, and what counterstories can be told to repair their agency?
Select Publications
Cupples, Laura M. 2017. “The Epistemological Roles of Models in Health Science Measurement” In McClimans, Leah (Ed.). Measurement in Medicine: Essays in Assessment and Evaluation. London: Rowman and Littlefield International.
Cupples, Laura M. 2019. “Measure Development and the Hermeneutic Task.” Synthese. Pp. 1-16
Cupples, Laura M. 2020. “Disability, Epistemic Harms, and the Quality Adjusted Life Year.” IJFAB: The International Journal of Feminist Approaches to Bioethics.
Cupples, Laura M. 2021. “Knowing with the Disability Community: Building a Disability Standpoint for Health Policy Research.” IJFAB: The International Journal of Feminist Approaches to Bioethics 14(2): 36-60.
Colorafi, K., Cupples, L., Kallman, D. and Kennedy, J. 2021. “Disability stories: personal perspectives of people with disabilities on navigating the US health system.” Disability & Society, pp.1-23.
Laura Cupples, PhD 