Unspeakable Conversations: Study Notes on Disability Ethics and Personhood

Unspeakable Conversations By Harriet McBryde Johnson

Overview

  • Author: Harriet McBryde Johnson
  • Published Date: February 16, 2003
  • Context: The narrative discusses thoughts and interactions between Harriet Johnson and renowned philosopher Peter Singer regarding disability and the ethics surrounding lives of individuals with disabilities.

Main Ideas

Opening Reflection
  • Johnson recounts her experience with Peter Singer.
  • Singer's belief:
    • He prefers to give parents the option of selective infanticide to avoid suffering associated with disabilities.
    • He argues that certain infants do not meet the criteria for personhood due to a lack of self-awareness.
  • Johnson expresses confusion and distress regarding Singer's arguments, describing the mental strain as almost enjoyable.
Defining Personhood
  • **Singer's Definition of Personhood: **
    • Awareness of existence in time.
    • Capacity to hold preferences about the future, including a desire to continue living.
  • Johnson's perspective:
    • She was considered to lack personhood as an infant and will eventually lose it again if cognitive decline occurs.
  • Singer's stance:
    • Allows for the termination of individuals deemed non-persons at any point in life.
Engagement with Disability Rights
  • Johnson's motivations for participating in discussions with Singer:
    • To advocate for disability rights and challenge Singer's views on selective infanticide.
    • Personal interest in the story and its implications.
  • Public Speaking Engagements:
    • Morning: Discussion with undergraduates on selective infanticide.
    • Evening: Dinner discussion on assisted suicide.

Encounter with Peter Singer

Initial Connect and Responses
  • Johnson's experience meeting Singer is marked by her own physical appearance and reaction:
    • She recounts the physical impact of her disability and the public's reaction, which varies from admiration to pity.
  • Singer's Reaction:
    • Shows no discomfort, engaging Johnson as a professional.
Discussion Overview
  • In a lecture, Singer discusses:
    • The inconsistency of allowing abortion but opposing infanticide.
    • The utilitarian approach to ethics, emphasizing maximizing preferences for well-being.
  • Johnson challenges Singer's arguments directly:
    • Criticizes his jurisprudential views and the assumptions underlying them.
    • Argues against the replacement-baby theory of maximizing happiness, stating that humans are not interchangeable.

Johnson's Personal Experience

Physical Description and Life Experience
  • Johnson describes her disability:
    • Muscle-wasting disease leading to skeletal transformations.
  • Reflects on the societal perceptions of disability and her own journey toward self-acceptance and comfort in her body.
Public Perception and Interaction
  • Johnson notes common societal reactions:
    • Mixed responses of admiration and pity when encountering her.
    • Frustration with the misunderstandings and stereotypes related to disability.

Concept of Identity and Value

Singer's Position on Disability vs. Ability
  • Singer argues that disability inherently makes individuals 'worse off.'
  • Johnson counters this by discussing individual experiences:
    • Claims that those with disabilities can lead fulfilling and meaningful lives.
Hypothetical Situations for Comparison
  • Johnson leads a hypothetical scenario regarding race, inquiring why race-based preferences are deemed unreasonable and ability-based preferences are not.
  • Dissects disparities in societal treatment based on disability.

Dialogues and Further Engagement

Email Correspondences
  • Follow extensive discussions through emails after the initial meetings:
    • Johnson engages with Singer on selective infanticide and societal biases regarding disabilities.
    • Recognizes a two-way curiosity in their discussions.
Discussion on Assisted Suicide
  • Johnson attends discussions about assisted suicide, exploring autonomy versus societal views on the quality of life for disabled people.
  • Critiques the implications of suggesting that disability is a reason for assisted suicide.

Conclusions and Ongoing Reflections

Philosophical Reflections on Disability
  • Johnson grapples with Singer's framework regarding what defines a 'good life' and challenges the idea that a life with disabilities is less valuable.
  • Final thoughts include:
    • A hope that society will not accept a view that devalues disabled lives.
    • Recognition of interconnectedness in society, which complicates the moral and ethical considerations raised by Singer.
Continuing Conversations and Community Responses
  • Johnson acknowledges feedback from her community regarding her engagement with Singer, illustrating the tension within disability rights.
  • Explores the complexities of what it means to advocate for disabled lives amid prevailing prejudices.