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 policy makers. Disabled people are presumed by measure developers, clinicians, policy makers, and the public to have a significantly lower quality of life than able bodied individuals, despite substantial first-person testimony to the contrary.
My current postdoctoral fellowship with the Collaborative on Health Reform and Independent Living (CHRIL) has given me the freedom to explore issues in the epistemology of disability more fully, and to develop new research skills. Not only have I participated in writing two major grant proposals, I have 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 my current research project, I draw 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 argue 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 am also taking part in the CHRIL’s “Disability Stories Project”, which interviews approximately 30 disabled people about their experiences with health coverage and health care and asks how these factors contribute to independent living and employment. I have participated with two other researchers in the creation of a codebook for these interviews, and in the descriptive coding the interview transcripts. When coding is complete, we will analyze the interview data and write up a qualitative analysis of the study for a health policy journal. A second, more philosophical analysis of the interview data will give me space to explore the ways disability is both inevitably embodied and political. Access to quality healthcare is essential for disabled and chronically ill people, as it is for all of us, but acknowledging that fact does not commit us to a medical model of disability. Structural barriers to accessing health care are one more piece of the ableist social infrastructure that systematically harms people with disabilities.
In the future, 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 faces many social barriers. 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. First, 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, how do limits in the 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?
A third future project might explore the ethics and epistemology of measures of disability deployed by clinicians in their role as gatekeepers for the Social Security Administration—the government body in charge of dispersing disability benefits. How do we determine who is disabled and how disabled they are? Are these assessments of disability “objective”, as per their remit, or inevitably value laden, and if value laden, should be happy with the values that inform them? Are the measures clinicians deploy valid and fit for purpose? Finally, how is our conception of disability and the credibility of those who claim it shaped by the purpose of these measures, namely, to determine who is capable of participating in the work economy and who is granted access to the welfare economy? Does a presumption of deception on the part of the disabled person distort the doctor-patient relationship in ways that we should be concerned about, and how can we repair that relationship?
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. Forthcoming. “Disability, Epistemic Harms, and the Quality Adjusted Life Year.” IJFAB: The International Journal of Feminist Approaches to Bioethics.