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Daniel Goldberg, "Epistemic Injustice, Disability Stigma, and Public Health Law"

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June 1, 2018

Historically and across societies people with disabilities have been stigmatized and excluded from social opportunities on a variety of culturally specific grounds. These justifications include assertions that people with disabilities are biologically defective, less than capable, costly, suffering, or fundamentally inappropriate for social inclusion. Rethinking the idea of disability so as to detach being disabled from inescapable disadvantage has been considered a key to twenty-first century reconstruction of how disablement is best understood.

Such ‘destigmatizing’ has prompted hot contestation about disability. Bioethicists in the ‘destigmatizing’ camp have lined up to present non-normative accounts, ranging from modest to audacious, that characterize disablement as “mere difference” or in other neutral terms. The arguments for their approach range from applications of standards for epistemic justice to insights provided by evolutionary biology. Conversely, other bioethicists vehemently reject such non-normative or “mere difference” accounts, arguing instead for a “bad difference” stance. “Bad difference” proponents contend that our strongest intuitions make us weigh disability negatively. Furthermore, they warn, destigmatizing disability could be dangerous because social support for medical programs that prevent or cure disability is predicated on disability’s being a condition that it is rational to avoid. Construing disability as normatively neutral thus could undermine the premises for resource support, access priorities, and cultural mores on which the practice of medicine depends.

The “mere difference” vs. “bad difference” debate can have serious implications for legal and policy treatment of disability, and shape strategies for allocating and accessing health care. For example, the framing of disability impacts the implementation of the Americans with Disabilities Act, Section 1557 of the Affordable Care Act, and other legal tools designed to address discrimination. The characterization of disability also has health care allocation and accessibility ramifications, such as the treatment of preexisting condition preclusions in health insurance. The aim of this conference was to construct a twenty-first century conception of disablement that resolves the tension about whether being disabled is merely neutral or must be bad, examines and articulates the clinical, philosophical, and practical implications of that determination, and attempts to integrate these conclusions into medical and legal practices.

Learn more: http://petrieflom.law.harvard.edu/events/details/2018-petrie-flom-center-annual-conference

Published in: Health & Medicine
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Daniel Goldberg, "Epistemic Injustice, Disability Stigma, and Public Health Law"

  1. 1. Daniel S. Goldberg, J.D., Ph.D Associate Prof, Center for Bioethics & Humanities, Dept. of Family Med Scholar in Equity, Health, & Law Farley Health Policy Center @prof_goldberg
  2. 2. © 2018 University of Colorado Center for Bioethics and Humanities “Public health law can integrate medical and social understandings of disability in ways that promise to reduce disability stigma and enhance epistemic justice. However, models of disability currently embedded in public health law do precisely the opposite, at least partly due to the fact that public health laws have historically assimilated medicalized models of disability.”
  3. 3. © 2018 University of Colorado Center for Bioethics and Humanities  Possible to wrong another in their capacity as a knower  A kind of injustice connected to yet distinct from distributions  Two dimensions 1. Hermeneutical 2. Testimonial
  4. 4. © 2018 University of Colorado Center for Bioethics and Humanities 19th c. History (esp. Eugenics) Contemporary  20 C.F.R. § 404.1508; 1528  “from anatomical, physiological, or psychological abnormalities which can be shown by medically acceptable clinical and laboratory diagnostic techniques.”  “Your statements alone are not enough to establish that there is a physical or mental impairment.” Puck,v. 6 (1879)
  5. 5. © 2018 University of Colorado Center for Bioethics and Humanities  Disabled people esp. likely to experience epistemic injustice  Credibility deficits to intellectually disabled people  Epistemic gap cx to phenomenology of disability  Medical vs. social models  Woeful capacity to discern QOL for disabled people  Hermeneutical gaps connected to felt/internalized stigma & passing  Marginalization, power, inequalities – stigma POWER  Chronic pain is excellent example
  6. 6. © 2018 University of Colorado Center for Bioethics and Humanities  Reconciliation of social & medical models  Social (welfare) policies should actively resist long histories of doubt, skepticism, & silencing  Medicaid work requirements??  Conceptual models req evaluation via #phlr, #legalepi
  7. 7. © 2018 University of Colorado Center for Bioethics and Humanities

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