2018 Petrie-Flom Center Annual Conference: Beyond Disadvanta

June 1, 2018, 8:00 AM - 5:00 PM

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Couldn't make it to the event? Check out some of the speakers' slides here!

"Congress acknowledged that society's accumulated myths and fears about disability and disease are as handicapping as are the physical limitations that flow from actual impairment." Justice William J. Brennan, Jr., School Bd. of Nassau, Fl. v. Arline, 480 U.S. 273 (1987).

The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2018 annual conference was organized in collaboration with the Harvard Law School Project on Disability.

Conference Description

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 conference aimed to construct a twenty-first century conception of disablement that resolves the tension about whether being disabled is merely neutral or must be bad, examined and articulated the clinical, philosophical, and practical implications of that determination, and attempted to integrate these conclusions into medical and legal practices.

This event was free and open to the public.

Agenda

8:30 - 9:00am, Registration

9:00 - 9:10am, Welcome Remarks

I. Glenn Cohen, Professor of Law and Faculty Director, the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics, Harvard Law School
Michael Stein, Visiting Professor of Law, Harvard Law School and Co-founder and Executive Director, Harvard Law School Project on Disability

9:10 - 10:10am, Theory and Definitions of Disability

Elizabeth Barnes, Professor of Philosophy, University of Virginia - Disability and Theories of Health
Ani Satz, Professor of Law, Emory University School of Law - Health Care as Eugenics
Daniel Goldberg, Associate Professor, Center for Bioethics and Humanities, University of Colorado Anschutz Medical Campus - Epistemic Injustice, Disability Stigma, and Public Health Law
Moderator: Anita Silvers, Professor, Department of Philosophy, San Francisco State University

10:10 - 10:25am, Break

10:25 - 11:25am, Disability in the Beginning and the End of Life

Mary Anne Case, Arnold I. Shure Professor of Law, University of Chicago Law School - Abortion, Vulnerabilities, and the Dignities of Risk
Marie-Eve Lemoine, PhD Candidate, Biomedical Sciences, University of Montreal (with Vardit Ravitsky) - Mere Difference and Chloe’s Law: Redefining the Scope of Prenatal Testing Conversations?
Rebecca Dresser, Daniel Noyes Kirby Professor of Law Emerita, Washington University in St. Louis School of Law - Dementia, Disability, and Advance Medical Directives: Toward a Defensible Legal Framework for Individual Decisions about Future Dementia Care
Moderator: I. Glenn Cohen, Professor of Law and Faculty Director, the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics, Harvard Law School

11:25am - 12:45pm, Disability in the Clinical Setting

Emily Largent, Assistant Professor of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine - Disabled Bodies and Good Organs: Reducing Discrimination in Transplant Decision-Making
Omar Sultan Haque, Lecturer, Department of Global Health and Social Medicine, Program in Psychiatry and the Law and Co-Director, UNESCO Chair in Bioethics, American Unit, Harvard Medical School (with Michael Stein) - Humanizing Clinical Care for Patients with Disabilities
Paulchris Okpala, Assistant Professor, College of Natural Sciences, California State University, San Bernardino - Medical Professionals with Disabilities Workforce and Associated Challenges
Caroline Huang, Bioethics Fellow, Department of Bioethics, National Institutes of Health Clinical Center (with David Wasserman) - Chronic Pain as a Challenge for Disability Theory and Policy
Moderator: Joseph T. Giacino, Director of Rehabilitation Neuropsychology and Research Associate at Spaulding Rehabilitation Hospital and Associate Professor in the Department of Physical Medicine and Rehabilitation at Harvard Medical School

12:45 - 1:30pm, Lunch

1:30 - 2:50pm, Equality, Expertise, and Access

Natalie M. Chin, Assistant Professor of Clinical Law and Director, Disability and Civil Rights Clinic: Advocating for Adults with Intellectual and Developmental Disabilities, Brooklyn Law School - Olmstead and the Role of State Government Agencies in Desexualizing Adults with Intellectual Disabilities
Leslie Francis, Alfred C. Emery Professor of Law and Professor of Philosophy, with adjunct appointments in Family and Preventive Medicine, Internal Medicine, and Political Science, University of Utah (with Anita Silvers) - Making “Meaningful Access” Meaningful: Equitable Healthcare for Divisive Times
Jasmine Harris, Acting Professor of Law, UC Davis School of Law - Publicity As Antidiscrimination Law
Wendy Salkin, Assistant Professor, Department of Philosophy, San Francisco State University (Fall 2018-) - Judicial Representation: Speaking for Others From the Bench
- Handout: "Judicial Representation: Speaking for Others From the Bench"
Moderator: Michael Stein, Visiting Professor of Law, Harvard Law School and Co-founder and Executive Director, Harvard Law School Project on Disability

2:50 - 3:50pm, Disability, Intersectionality, and Social Movements

Medha Makhlouf, Assistant Professor of Law and Director, Medical-Legal Partnership Clinic, Penn State Dickinson School of Law - Destigmatizing Disability Under U.S. Immigration Law: A Proposal for a Construction of Disablement Based on Dignity as Opposed to Dependency
Craig Konnoth, Associate Professor of Law, University of Colorado School of Law - Medicine, Legitimacy, and Gatekeeping
Sagit Mor, Director, Law and Health LLM Program, Faculty of Law, University of Haifa (Israel) - Nothing About Us Without Us: Individual and Collective Dimensions
Moderator: Carmel Shachar, Executive Director, the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics and Lecturer at Law, Harvard Law School

3:50 - 4:05pm, Break

4:05 - 5:05pm, Quantifying Disability

Nathaniel Counts, Senior Policy Director, Mental Health America (with C. Taylor Poor, Julie Erickson, Thomas Hart, and Kelly A. Davis) - Can We Universally Accommodate Mental Health and Should We?: A Systematic Review of the Evidence and Ethical Analysis
Mason Marks, Visiting Fellow, the Information Society Project, Yale Law School - Algorithmic Disability Discrimination: How Corporate Mining of Emergent Medical Data Promotes Inequality
Govind Persad, Assistant Professor in the Department of Health Policy and Management, Bloomberg School of Public Health and Berman Institute of Bioethics, Johns Hopkins University - Considering Quality of Life While Repudiating Disability Injustice: The Pathways Approach to Priority-Setting
Moderator: William P. Alford, Vice Dean for the Graduate Program and International Legal Studies;
Henry L. Stimson Professor of Law; Director, East Asian Legal Studies Program; Chair, Harvard Law School Project on Disability

5:05 - 5:20pm, Closing Remarks

Carmel Shachar, Lecturer on Law and Executive Director, the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics, Harvard Law School

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Slide Presentations

Rebecca Dresser, "Dementia, Disability, and Advance Medical Directives: Toward a Defensible Legal Framework for Individual Decisions about Future Dementia Care"
Leslie Francis, "Making “Meaningful Access” Meaningful: Equitable Healthcare for Divisive Times"
Daniel Goldberg, "Epistemic Injustice, Disability Stigma, and Public Health Law"
Omar Sultan Haque, "Humanizing Clinical Care for Patients with Disabilities"
Caroline Huang, "Chronic Pain as a Challenge for Disability Theory and Policy"
Craig Konnoth, "Medicine, Legitimacy, and Gatekeeping"
Emily Largent, "Disabled Bodies and Good Organs: Reducing Discrimination in Transplant Decision-Making"
Marie-Eve Lemoine, "Mere Difference and Chloe’s Law: Redefining the Scope of Prenatal Testing Conversations?"
Mason Marks, "Algorithmic Disability Discrimination: How Corporate Mining of Emergent Medical Data Promotes Inequality"
Paulchris Okpala, "Medical Professionals with Disabilities Workforce and Associated Challenges"
Govind Persad, "Considering Quality of Life While Repudiating Disability Injustice: The Pathways Approach to Priority-Setting"
Ani Satz, "Health Care as Eugenics"

Sponsored by the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School. This year’s conference was organized in collaboration with the Harvard Law School Project on Disability, and was cosponsored by the Center for Bioethics at Harvard Medical School, with support from the Oswald DeN. Cammann Fund at Harvard University.