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

1. Considering Quality of Life While
Repudiating Disability Injustice:
The Pathways Approach to
Priority-Setting
Govind Persad, PhD, JD
Assistant Professor
Berman Institute of Bioethics and
Department of Health Policy and Management
Bloomberg School of Public Health
Johns Hopkins University

2. The “QALY Trap”
• QALY: quality x quantity
• Example: liver transplant for someone with
paraplegia (John et al.)
– Deepak: 20 yrs @ 0.55 quality = 11 QALYs
– Valentina: 20 yrs @ 1.00 quality = 20 QALYs
• Many object to the use of QALYs in priority-setting
because they disadvantage people with
preexisting disabilities (“double jeopardy”).
• Yet QALYs are a powerful priority-setting tool and
recognize important values

3. The “QALY Trap”: existing solutions
• Ignore quality of life assessments (Persad et al.
2009; Kerstein)
• Accept disability discrimination (Ord & Beckstead)
– Seem unsatisfactory

4. The “QALY Trap”: existing solutions
• Prioritarian: Assign higher priority to people who
experienced lower QoL in past. Offsets lower
priority due to lower future QoL. (John, Millum,
Wasserman)
– Problem: equivalent to traditional QALY approach
when QoL-lowering disability was recently
acquired
• Assign greater weight to QoL improvements for
the worst off (Merritt)
• Make quantity “lexically” prior (Esposito, Hassoun)

5. The Pathways Approach
• Allow consideration of lower QoL due to disability
when the loss of QoL:
– Results from unpreventable disadvantage
– Results from fair response to scarcities/tradeoffs
– Results from transition costs
• Don’t consider lower QoL when loss of QoL:
– Results from private aversions
– Results from disability-focused injustice
• Priority-setting is not just about optimizing a
welfare function

7. Unavoidably disadvantaging disabilities
• Death: deprives individuals of experience and
agency
– Anencephaly, coma: experience
– Profound mental disabilities, advanced dementia:
agency
• Severe pain
• Claim: severe pain, loss of experience, loss of
agency are net disadvantages regardless of how
we arrange the social world
– Doesn’t entail that inability to have certain types of
experiences is a net disadvantage

8. Unjust-to-prevent disadvantages
• Tradeoffs among people with different disabilities
– Web design example
– Ramp example from Leslie and Anita’s paper
• Tradeoffs between disability accommodation and
other values
– Education for general-education students, wages
for service workers, other social goals
• Claim: some disadvantages that result from
interaction of a given disability with the social
world would be unjust to prevent

9. Private aversions
• Acceptable: dating preferences
• Objectionable, but wrong to legally prohibit:
private associational choices
• Claim: While the effects of private aversions can
be disadvantaging, societal decisionmakers
setting priorities should ignore QoL impacts that
result from private aversions
– Parallel with Palmore v. Sidoti – “giving effect to
private bias”

10. Unjust policies
• Claim: When setting priorities, we should ignore
expected lower future QoL that results from:
– Policies motivated by animus against people with
disabilities
– Insufficient accommodations for people with
disabilities (as settled by background theory)
• Injustice producing lower QoL must be disability-
focused—unjust background scarcity is not
enough

11. Modularity
• Could combine Pathways Approach with
prioritarianism suggested by John et al.
• Could ”plug in” a variety of background theories of
what assistance people with disabilities are
entitled to

12. Other pathways approaches
• Count QoL decreases that are due to allowable
private aversions (e.g. dating preferences)
• Assign lower weight to QoL decreases that are
due to aversions or injustice, rather than ignoring
them altogether
• Don’t count QoL decreases that stem from
background injustice, even when not disability
focused
• Don’t count any QoL decreases because they
wouldn’t exist under ideal circumstances—all are
”cosmically unjust” (“[GA] Cohen-inspired”)