Book contents
- Frontmatter
- Dedication
- Epigraph
- Contents
- Miscellaneous Frontmatter
- Acknowledgments
- Introduction
- 1 Decisions
- 2 The Injury
- 3 Coming to Terms with Brain Injury
- 4 The Origins of the Vegetative State
- 5 A Shift since Quinlan
- 6 Maggie's Wishes
- 7 Something Happened in Arkansas
- 8 From PVS to MCS
- 9 Leaving the Hospital
- 10 Heather's Story
- 11 Neuroimaging and Neuroscience in the Public Mind
- 12 Contractures and Contradictions: Medical Necessity and the Injured Brain
- 13 Minds, Monuments, and Moments
- 14 Heads and Hearts, Toil and Tears
- 15 What Do Families Want?
- 16 Deep Brain Stimulation in MCS
- 17 Mending Our Brains, Minding Our Ethics
- 18 It's Still Freedom
- 19 Maggie Is in Town
- 20 When Consciousness Becomes Prosthetic
- 21 The Rights of Mind
- 22 A Call for Advocacy
- Epilogue
- Notes
- In Memoriam
- Index
22 - A Call for Advocacy
Published online by Cambridge University Press: 05 September 2015
- Frontmatter
- Dedication
- Epigraph
- Contents
- Miscellaneous Frontmatter
- Acknowledgments
- Introduction
- 1 Decisions
- 2 The Injury
- 3 Coming to Terms with Brain Injury
- 4 The Origins of the Vegetative State
- 5 A Shift since Quinlan
- 6 Maggie's Wishes
- 7 Something Happened in Arkansas
- 8 From PVS to MCS
- 9 Leaving the Hospital
- 10 Heather's Story
- 11 Neuroimaging and Neuroscience in the Public Mind
- 12 Contractures and Contradictions: Medical Necessity and the Injured Brain
- 13 Minds, Monuments, and Moments
- 14 Heads and Hearts, Toil and Tears
- 15 What Do Families Want?
- 16 Deep Brain Stimulation in MCS
- 17 Mending Our Brains, Minding Our Ethics
- 18 It's Still Freedom
- 19 Maggie Is in Town
- 20 When Consciousness Becomes Prosthetic
- 21 The Rights of Mind
- 22 A Call for Advocacy
- Epilogue
- Notes
- In Memoriam
- Index
Summary
When Lyndon Johnson nominated Thurgood Marshall to the Supreme Court as its first black justice, Marshall thanked the president for being in command of history. He told LBJ, “You didn't wait for the times. You made them.” Robert Caro, Johnson's biographer, feels that Marshall's gratitude to the president was not for his elevation to the court but rather for Johnson's forward-looking stance on American civil rights.
To date, we have been waiting for the times to change before we change our attitudes and practices toward those who are minimally conscious. Ours is a moment of history that calls to collectively take control. We need to make the times our own and respond to what interdisciplinary study in the neurosciences and the medical humanities is teaching us about the experiences of those in a minimally conscious state. It is time that rights come to mind.
To do this we must build upon the disability rights movement with its deep debt to its predecessor movements and affirm consciousness as a right that must be recognized, respected, and enabled. It will foster productive science and rectify societal deficiencies that remain untenable, if not inhumane. The goal is a nascent social movement that will place the needs of these patients and families on the legislative agenda, so that in a bipartisan fashion they can be fully protected under the law and receive the care and support that they need.
To begin we need our generation of Freedom Riders, those who won't wait for the times but make them their own. These advocates will join in the long march of a new civil and disability rights struggle. Like their predecessors they will be motivated by a sense of what is right and the need to rectify injustice. But their journey will be different.
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- Chapter
- Information
- Rights Come to MindBrain Injury, Ethics, and the Struggle for Consciousness, pp. 309 - 312Publisher: Cambridge University PressPrint publication year: 2015