Disability Bioethics

mainstream limitations & ableism, social/medical model, quality of life, epistemic injustice

Disability

• body/mind conditions → impairment or biological/physiological deficit

• alter feel/act/think/experience world

• Conditions = temporary, chronic, acute, episodic

• Types = physical, cognitive, intellectual, sensor, psychological

• impairment or biological/physiological body/mind deficit

Language

• identity-first - “_ person”

• person-first - “person with _”

• disabled (person) > handicapped or differently abled

Disability Bioethics

• recenter disabled voices → uncover marginalizing/disenfranchising societal forces

• failure of social/political/economic environment

• accommodation failure X inherent health condition

• challenge assumptions/narratives about QOL

3 Lessons

Reynolds (2018)

• X assume poor QOL bc disabled

• X impose idea of “normal” function → ableism

• X conflate disability w/ suffering/dysfunction → may not be true

Differences

• Mainstream - perpetuates harm against disabled (Mukherjee et al 2022)

  • top-down approach X family values/expectations → fulfilling life

Ableism

• systematic marginalization/stigma of disabled

• favors non-disabled (cultural norm)

• individual level - not offering care

• institutional/societal level - prevent marriage

Quality of Life

• assume low QOL → assume death > life-saving interventions

• “paradox” → disabled rate QOL as excellent

Eugenics

• disability/eugenics relationship → historic forced sterilization

• genetic testing dilemma → abortion

Disability Models

• Medical Model - body dysfunction/injury → clinical intervention

• Social Model - environment failure → X meet body/mind needs

Epistemic Injustice

• harm against “knower” (Fricker 2007)

• testimonial injustice → disbelief in story/experience

• frequent in chronic illnesses → pt concerns minimized/disbelieved