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Caroline Huang, "Chronic Pain as a Challenge for Disability Theory and Policy"


Published on

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.

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Caroline Huang, "Chronic Pain as a Challenge for Disability Theory and Policy"

  1. 1. BIOETHICS AT THE NIH Chronic pain as a challenge for disability theory and policy Caroline J. Huang, PhD and David Wasserman, JD, MA Department of Bioethics National Institutes of Health Clinical Center
  2. 2. BIOETHICS AT THE NIH Disclaimer We have no conflicts to disclose. The views expressed in this talk are our own. They do not represent the position or policy of the NIH, DHHS, or US government.
  3. 3. BIOETHICS AT THE NIH The plan • Chronic pain represents an important and neglected type of disability • Chronic pain is a “bad” difference • Chronic pain requires mitigation that current practice and policy do not provide • Practice and policy require adaptations
  4. 4. BIOETHICS AT THE NIH “Locating” chronic pain Medically explained Medically unexplained Acute Chronic Category 1 (e.g., recent sprain) Category 2 (e.g., sudden back pain) Category 4 (e.g., fibromyalgia) Category 3 (e.g., rheumatoid arthritis)
  5. 5. BIOETHICS AT THE NIH How medically unexplained chronic pain compares to other disabilities • Longer pain lasts  more like other standard physical disabilities (e.g., paraplegia) – Substantial functional limitations – Adverse social responses • Less explainable  less like other standard physical disabilities – Subjectivity and invisibility
  6. 6. BIOETHICS AT THE NIH If chronic pain is a disability, what kind is it? “Mere” difference • Leknos et al. (2014): Benefits of pain • Barnes (2016): (1) “Pain is not wonderful, yet the identity is who I am. And I’m proud of it.” (2) Pain as integral part of athletic performance “Bad” difference • Miserandino (2003): Spoon theory • Shiffrin (2012): Pain as non-comparative harm
  7. 7. BIOETHICS AT THE NIH If chronic pain is a “bad” difference, it requires mitigation • WHO/IASP (2004): Access to pain relief is a universal right – Minimum conditions of a decent life – Protection against certain standard threats • A right to pain relief does not imply a right to be free of pain
  8. 8. BIOETHICS AT THE NIH This right is frequently disregarded, even by medical experts • Pryma (2017): female fibromyalgia patients – Tolerating insensitive treatment vs. potentially receiving accommodation • Eccleston (1997): patients and clinicians – Chronic pain as a learned behavior – Responsibility to seek care for acute pain
  9. 9. BIOETHICS AT THE NIH Suggestions for practice and policy 1. Do not rely on physiological cause alone 2. Provide assistance to people regardless of how they acquired condition 3. Offer patients range of management options, but do not mandate specific choices 4. Expand assistance for disabilities that limit participation
  10. 10. BIOETHICS AT THE NIH Summary • Chronic pain shares important characteristics with well-known disabilities • Badness of chronic pain supports idea of a right to pain relief • Disability theory, practice, and policy cannot be “one-size-fits-all”