Lecture 10: Autonomy and Ableism

Vocabulary flashcards covering Anita Ho's critique of mainstream minimalist autonomy, landmark disability cases (Larry McAfee, Kenneth Bergstedt, Dan Crews, and Elizabeth Bouvia), ableist ideology, and systemic vs. individual interventions.

Minimalist (or Individualist / Procedural) Approach to Autonomy

The mainstream bioethical approach that treats patient autonomy as informed consent obtained one treatment or procedure at a time, requiring information, decision-making competence, and absence of coercion, while ignoring broader institutional and ideological constraints.

Dyadic Modeling of Power

An understanding of influence and autonomy focused strictly on two-party interactions (e.g., clinician and patient), which fails to capture how larger social structures, institutions, and ideologies determine patient value frameworks and available options.

Informative Model

A model of the physician-patient relationship described by Emanuel & Emanuel, compared to the minimalist approach to autonomy, where the clinician provides technical information and the patient executes choice in a value-neutral, procedural manner.

Anita Ho

A bioethicist who critiques the mainstream minimalist model of autonomy for ignoring systemic oppression, social resource constraints, and ableist ideologies that shape disabled patients' desires to discontinue life-sustaining care.

Anita Ho's Two-Part Critique of Minimalist Autonomy

The critique that the minimalist approach fails to consider: (1) how institutional frameworks and social structures constrain feasible options, and (2) how societal ideologies shape patient decision-making processes.

Larry McAfee

A quadriplegic patient injured in a motorcycle accident at age 30 who petitioned for ventilator removal after exhausting his one-million-dollar insurance deductible and being forced into nursing homes; he won the legal right to have the ventilator removed.

Kenneth Bergstedt

A quadriplegic patient injured in a swimming accident at age 10 who sought ventilator removal at age 31 when his father and primary caregiver was diagnosed with lung cancer, expressing fear of being cast 'adrift in a sea of indifference'; he won the legal right to disconnect treatment.

Dan Crews

A quadriplegic patient injured in a car accident at age 3 who sought ventilator removal in his mid-20s due to overwhelming medical bills, financial strain on his family, and fear of nursing home institutionalization, but was deemed to lack capacity due to depression.

Elizabeth Bouvia

A quadriplegic woman in her mid-20s with severe cerebral palsy and degenerative arthritis whose request to starve while receiving palliative care at Riverside General Hospital led to a landmark legal battle over the right to refuse force-feeding.

Bouvia v. Superior Court (1986)

A California appellate ruling holding that a competent adult patient—regardless of whether they are terminally ill—has a basic and fundamental right to refuse medical treatment, including life-prolonging mechanical respiration, nutrition, or hydration.

Life-Prolonging Medical Treatment (under Bouvia)

A broad legal category established by the Bouvia court that includes medication as well as artificially or technologically supplied respiration, nutrition, and hydration.

Ableist Ideology

A pervasive societal belief system that treats a life with impairment as categorically worse off and meaningless, potentially leading assessors and courts to accept a disabled individual's desire to die at face value as rational rather than investigating social causes of despair.

Deformed Desire

An adaptive preference formed as a result of internalized oppression so deep-seated that an individual cannot recognize or resist its influence, causing them to desire outcomes (such as death) that reflect severe social neglect and despair.

Oppressive Socialization

A social dynamic that impairs an individual's ability to develop critical reflection, self-trust, and self-confidence, preventing marginalized or devalued people from forming and exercising genuine autonomous agency.

Self-Trust and Self-Confidence

Psychological capacities identified by Anita Ho as essential to possessing and exercising autonomy, which can be undermined by ableist social devaluation and absence of support networks.

System-Level Interventions (Ho)

Material and institutional supports—such as personal care assistance, home support, assistive devices (e.g., ceiling lifts, electric wheelchairs), and accessible transportation—intended to remove social barriers and facilitate genuine self-determination.

Epistemic Oppression

The systemic discounting or silencing of disabled individuals' moral agency and perspectives, which Ho warns can occur when paternalistic protection overrides their choices under the assumption that oppression has rendered them incapable of self-government.