The Future of Disabilities: Responsibility, Equality, and Value

"I have been interested in disability ever since my younger sister was born with Down's Syndrome. As a child, I remember wondering whether there might one day be a "medicine" that could "remove" her condition (non-identity wasn't much of a concern for me then!). At the same time, I couldn't quite see anything wrong with that playful, stubborn, and sassy little girl my parents had told me would grow up having more difficulties than other kids."

"Nearly thirty years later, much has changed in how we think about Down's Syndrome and other disabilities. For example, the widespread introduction of non-invasive prenatal tests (NIPTs) and other diagnostic mechanisms have radically transformed the landscape of reproductive decision-making. Here is an implication that some might intuitively think follows: the ready availability of early and non-invasive diagnosis of certain chromosomal conditions-together with the possibility of termination-may change people's perception of responsibility for disability. Under such circumstances, default expectations regarding procreative decision making may shift: those who decide to continue with their pregnancies after a positive diagnosis (or not to get tested in the first place) might be perceived as acting in a way that cries for justification in the eyes of many."

Personal experience with a sibling with Down's Syndrome shaped early curiosity about eliminating the condition and ambiguous feelings about the sibling's personality. Technological advances, notably non-invasive prenatal tests (NIPTs), have transformed reproductive decision-making by enabling early, safe diagnosis of chromosomal conditions. The combination of early diagnosis and termination availability may alter public perceptions of responsibility for disability, generating expectations that parents justify continuing affected pregnancies or avoiding testing. Such shifts could change the paradigm of disability from bad brute luck to a matter of procreative responsibility, with significant implications for obligations toward disabled people and their families.

Read at Apaonline