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.
From the point of view of the public, this position might not seem obviously morally problematic. Many might think of it just as a natural consequence of the increased availability of the relevant technologies. However, the worry is that, under circumstances of widespread availability and safe intervention, the paradigm under which we think about responsibility for disability might switch, with important implications for what we take to owe disabled individuals and their families. Traditionally, disability has been understood within philosophy as a case of bad brute luck—a disadvantage or inequality stemming from factors beyond an individual’s control, and therefore a legitimate ground for social support or compensation. Yet, as genetic selection becomes more common, disabilities might instead come to be seen as chosen or avoidable outcomes—as inequalities that could have been prevented, and thus no longer warrant compensation. As I and Fay Niker argued in an earlier blog post, this shift risks reinforcing the burden of those already disadvantaged.
Some might think this is a problem only if we view justice merely as a tool for compensating for inequalities resulting from bad brute luck. However, even though our social systems are not explicitly nor merely structured only around luck egalitarian principles—those deriving from the idea that justice requires offsetting inequalities that stem from factors outside one’s control (see e.g. Ronald Dworkin’s “What Is Equality? Part I & II” (1981); Richard Arneson’s “Equality and Equal Opportunity for Welfare” (1989); and G. A. Cohen’s “On the Currency of Egalitarian Justice” (1989))—many implicit norms, behaviors, and attitudes reflect these types of assumptions—e.g., there are sometimes priority-setting rules regarding conditions seen as self-inflicted and behavioral changes are sometimes required from patients before access to certain medical treatments, such as in cases of addiction. Even when such principles are not formally codified, the attitudes of medical and social professionals, as well as public health messaging, may implicitly treat responsibility for disability as a matter of individual choice rather than recognizing its complex social and structural determinants and the alternative choices available to families. This marks an important shift in the prevailing paradigm around responsibility for disability—the future effects of which philosophers should examine carefully.
Yet, in many ways, things have also stayed the same in these thirty years. Misconceptions, stigma, and a lack of knowledge about what it is like to live with a disability continue to shape both public attitudes and personal choices. For example, it is fair to say that we are still not great at knowing what it is like to live with a disability (and with certain disabilities, like intellectual ones, even more) or sickness, more generally. Here, popular opinion and much of the philosophical literature tend to diverge from the perspectives of many disabled individuals, who often assess their own conditions more favorably.
In the last decade, some philosophers of disability have argued that disabilities are not necessarily bad for those who have them, most notably Elizabeth Barnes in her 2014 article “Valuing Disability, Causing Disability” and her later book The Minority Body: A Theory of Disability. They have emphasized, among other points, the distinction between disability and poor health, thereby challenging the traditional “bad difference view,” according to which disabilities are detrimental to well-being. While some versions of this alternative view might be open to certain theoretical and practical challenges—such as explaining why, on this account, it would still be impermissible to inflict disability, or how it applies to intellectual disability—its central insight marks a significant shift in the philosophical understanding of the value of disability. However, more nuanced approaches are still needed to assess the value of different kinds of disabilities based on their distinct impacts on people’s lives, taking into account both objective and subjective factors—such as their connection to specific health outcomes, exposure to discrimination, and individual or collective preferences regarding different disabilities.
Assumptions about the value of disabilities—whether they are overall bad, neutral, or good for those who have them, or to what extent they are so—are crucial. They influence both the acceptance and rejection of interventions aimed at preventing or ameliorating disability, and underlie decisions about which future technologies to investigate and fund. And while there are many reasons people might choose not to prevent disability, making informed decisions in this context seems to require reliable knowledge about the value of these conditions, which should be carefully factored into the decision-making process.
Yet, paradoxically, as the size of certain disability populations continues to decline—due to, among other things, the widespread use of non-invasive prenatal testing—the public and philosophical understanding of what it is like to live with a disability may decrease even further.
Disability remains a challenging philosophical issue because it exposes the limits of how we think about many questions that we often take to be settled, from responsibility, to equality, or even how we identify and measure value in the first place. Nearly thirty years later, I feel privileged to have grown up with my sister as a reminder of how rich, complex, and surprisingly different lives can be. She continues to inspire me—both personally and philosophically—to think carefully about fairness and value.
Julia Mosquera
Julia Mosquera is a researcher in Philosophy at the Institute for Futures Studies (IFFS) in Stockholm, where she leads the research project The Future of Disabilities: The Ethics and Politics of Disability and Technologies, funded by the Riksbankens Jubileumsfond.
