ABSTRACT
In this essay, I recount and examine my response to a genetic diagnosis of my disabled daughter. My daughter was forty-nine before the diagnosis came. All her disabilities were traceable to a de novo single gene variant on the PURA gene that was discovered only in 2014. I speak of the jolt and the recalibration that this discovery engendered, concluding that, while it seemed that everything had changed, nothing had changed. But my family did discover a community in which Sesha joins other PURA-perfect sons and daughters and where we as a family acquire a "horizontal identity" marked by a genetic variant.
Subject(s)
Developmental Disabilities/genetics , Genetic Testing , Intellectual Disability/genetics , Cost of Illness , Decision Making , Female , Humans , Middle Aged , ParentsABSTRACT
In this essay, we suggest practical ways to shift the framing of crisis standards of care toward disability justice. We elaborate on the vision statement provided in the 2010 Institute of Medicine (National Academy of Medicine) "Summary of Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations," which emphasizes fairness; equitable processes; community and provider engagement, education, and communication; and the rule of law. We argue that interpreting these elements through disability justice entails a commitment to both distributive and recognitive justice. The disability rights movement's demand "Nothing about us, without us" requires substantive inclusion of disabled people in decision-making related to their interests, including in crisis planning before, during, and after a pandemic like Covid-19.
Subject(s)
Coronavirus Infections/epidemiology , Disabled Persons , Health Equity/ethics , Pneumonia, Viral/epidemiology , Social Justice/ethics , Standard of Care/ethics , Betacoronavirus , COVID-19 , Communication , Health Equity/legislation & jurisprudence , Humans , Pandemics , SARS-CoV-2 , Social Justice/legislation & jurisprudence , Standard of Care/legislation & jurisprudenceABSTRACT
The writer responds to the book review essay "Caring for People with Disabilities: An Ethics of Respect," by Kevin Mintz and David Wasserman, in the January-February 2020 issue of the Hastings Center Report, which discusses her book Learning from My Daughter: The Value and Care of Disabled Minds.
Subject(s)
Disabled Persons , HumansABSTRACT
Many bioethicists try to secure a moral requirement to select against disability, while wishing to avoid denigrating disabled people. Dan Brock's arguments are representative of this attempt. Brock argues that the harm of giving birth to a disabled child when an able child could be had in its stead is a "nonperson-affecting harm." The harm is creating a world with less opportunity and more diminishment of opportunity. I argue that the presumptions that a life with disability is ceteris paribus a worse life, and that there is an inherent badness in living with a disability are contestable and fail to provide an argument that avoids the objections that disability scholars have voiced to reproductive selection against disability.
