How does a neurodegenerative disease transform one’s perspective on life and society?

Beyond Disability is a collection of essays reflecting on life affected by a neurodegenerative disease. The author shares her personal struggles and her philosophical approach to life, intertwining a daily fight for survival with deep reflections on society, interaction, and self. Through this process, she offers valuable insights for researchers in human sciences while advocating for the importance of understanding disability. The book ultimately delivers a message of living life fully despite circumstances.

• Cover
• Half-Title Page
• Title Page
• Copyright Page
• Abstract
• Content warning
• Table of Contents
• Learning objectives
• Foreword by André Comte-Sponville
• Acknowledgments
• Introduction
• Part I Personal life [Intimité]
  • 1 Two ways of seeing things
  • 2 What would a human life be if never tested by fatigue?
  • 3 Shedding light on how we depend on others
    • Seizing the chance to meet others; reassessing who bears the greater burden
  • 4 Like a tango, a dance like no other
    • What it feels like to walk with each of my assistants
  • 5 Harsh reality attenuated
    • When my disability left me as long as I was in the water
  • 6 A speech read on my behalf at an occasion commemorating my late father
• Part II Devising solutions [Inventions]
  • 7 There are so many ways to dance your life
  • 8 What prevents us from going around in circles
    • Whether or not you are disabled, in order to be happy, you must have the ways and means
  • 9 To each their own world, to each their own path
  • 10 Some thoughts on the concept of freedom
    • What the experience of living with an evolving disability tells us about freedom
    • A life that wanted to live, in the midst of other lives that wanted to live.
    • Constantly opening up
    • Leave room for “the angels’ share”
• Part III Social norms [Institutions]
  • 11 What matters to us?
  • 12 Giving birth to life: On the importance of not eliminating divergence
    • Toward a new socially sanctioned and acceptable eugenics.
  • 13 In the midst of life we are in death, is this how people die?
    • What the present debate about euthanasia teaches us
    • A. The foundations of a position in favor of euthanasia
      • Proximate reasons in defense of euthanasia
      • The underpinnings of a pro-euthanasia position
      • A debatable notion of freedom?
    • B. The anti-euthanasia position: A practicable alternative?
      • Arguments against euthanasia
      • What underpins the anti-euthanasia position
      • Censuring freedom of choice
    • C. Accompanying a living or a dying person, the battle is the same
      • Euthanasia as an admission of social failure
      • What form of caring is desirable?
      • A modern-day loss of confidence
• Part IV Breaking new ground [Inouï]
  • 14 Calligraphy using the mouth: The technical transposal of a skill
    • Skills relevant to the use of the mouth for calligraphy
    • The means of technical transfer: Corporal space as the condition for innovation
  • 15 Writing differently
    • Description of the situation and ownership of my work
    • My work with my typing assistant
  • 16 Parachute
  • 17 Doctoral thesis: Acknowledgments
  • 18 Fashioning a life for yourself in a world with which you are at odds
• Conclusion
  • Opening up cracks in the wall of reality
• Notes
• Discussion questions
• Bibliography
• Index

Anne-Lyse Chabert has explored vulnerability in disability since 2007, winning the 2015 Pierre Simon Prize for her research on the topic.

Chorégraphier sa vie: Writing life as a dance

Un projet documentaire by Anne-Lyse Chabert

A short documentary that illustrates the themes of Anne-Lyse Chabert's two LPP books.

Translated by Jane Brooks

Éclarier Nos Dépendances à L'Autre: Declaring Our Dependencies on Others

Anne-Lyse Chabert & Swati Perrot

An excerpt from the presentation entitled "Shedding Light on Our Addictions," produced by Sciences Santé Société (S3ODEON) initiatives. Anne-Lyse Chabert answers the question: What is the most difficult thing living with a disability? 

© S3ODEON – Sciences Santé Société, used with permission.