Rights language and disorders of consciousness: a call for advocacy

ABSTRACT

Drawing upon sources in neuroethics, civil rights, and disability rights law, we argue for the reintegration of people with severe brain injury back into the nexus of their families and communities consistent with the Americans with Disabilities Act (ADA) and the UN Convention on the Rights of Persons with Disabilities, both of which call for the maximal integration of people with disability into society. To this end, we offer a rights-based argument to address the care of people with severe brain injury. Instead of viewing the provision of rehabilitation as a reimbursement issue, which it surely is, we argue that it can be productively understood as a question of civil rights for a population generally segregated from the medical mainstream and from society itself. Their segregation in the chronic care sector constitutes disrespect for persons, made all the more consequential because recent advances in brain injury rehabilitation make reintegration into civil society an aspirational, if not achievable goal.

KEY WORDS:

• Brain Injury
• Disability and Civil Rights
• Disorders of Consciousness
• Medical Ethics
• Neuroethics

Declaration of interest

The authors gratefully acknowledge the support of the Jerold B. Katz Foundation to the Consortium for the Advanced Study of Brain Injury (CASBI) at Weill Cornell Medical College and Yale Law School. The authors report no conflicts of interest.