If Not Now, Then When? Taking Disability Seriously in Bioethics

Area of Science:

• Bioethics
• Disability Studies
• Medical Ethics

Background:

• The disability movement has historically viewed bioethicists negatively, a perception persisting despite bioethicists' claims of progress.
• Common bioethical responses dismiss concerns as outdated, extremist, or resolved by legislation like the Americans with Disabilities Act.

Purpose of the Study:

• To challenge the notion that ableism and biased assumptions are resolved in bioethics.
• To argue for the continued presence of ableism and unexamined assumptions within bioethics.
• To advocate for systemic changes to address ableism in bioethics.

Main Methods:

• Analysis of historical records and bioethicists' responses to criticism.
• Drawing on collective experiences of bioethicists in clinical consultation, education, and program leadership.
• Examining the persistence of ableism and assumptions in healthcare decision-making.

Main Results:

• Ableism and unexamined assumptions about people with disabilities remain prevalent in bioethics.
• These biases lead to discriminatory healthcare decisions, mistreatment, and overlooking viable life options.
• Decades of counter-narratives and research have not fully eradicated these issues.

Conclusions:

• Ableism and biased assumptions in bioethics pose ongoing risks to equitable healthcare.
• Rectifying these problems requires multi-level solutions: individual, interpersonal, and structural.
• Urgent attention is needed to integrate disability seriously into bioethical practice and education.