Irreducible Subjects: Disability and Genomics in the Past, Present, and Future
Since the announcement of the initial draft sequencing of the human genome in 2000, scholars working in disability history and disability studies have sought to expand and deepen our understanding of disability in consideration of our advancing knowledge of genomics and medicine. They have moved beyond the medical model — which emphasizes disability as impairment, loss, morbidity, and entailing varying degrees of social ostracism. Recent accounts of disability have highlighted the extent to which individuals with disabilities have lived and continue to live full and enriching lives.
As importantly, scholars of disability and the disability community have done much work to address the dehumanizing dynamics of ableism. Ableism is both an ideology and a practice. Like racism, misogyny, and heteronormativity, and often interconnected with all three, ableism narrowly defines “ability” and those who are “able” (typically the white, straight, cisgender male) and declares “disabled” those who stand outside of that framework. Ableism gets enacted when non-disabled people design and build a world without consideration for its disabled inhabitants. Many disability studies scholars have examined the long history of ableism, especially its links to the global eugenics’ movement in the early 20th century and its continuing influence on our lives in the 21st-century. Other scholars have discussed proslavery ideology and scientific racism and the ongoing connection of racism with ableism.
Scholars have shown how since the Enlightenment concepts of disability and ability have had their origins in an idealized, deeply racist account of the “normal” body: white, proportional, unblemished, rational, “fit”, able to carry out physical work, and to contribute towards the defense of the nation and the ‘race.’
Since the 18th century, scientific racism has perpetuated the notion that bodies outside of these narrow and utopian schemata were to exist at the margins of society or altogether be eliminated from social life. Such studies demonstrate that in many instances (though not all), disabilities are only as real as society can make them, and that such making reveals complex interplays between ideologies, inequities of power, and violence against persons and groups.
Although an ableism that is deeply informed by other prejudices has continually worked to remove disabled people from society, contemporary disability studies scholars and the disability community have repeatedly underscored that in a very real sense disability is a fundamental expression of being human. Disability is a universal experience. At some or multiple points throughout their lives, everyone will experience disability of some form. Furthermore, disability studies and the disability rights movement have highlighted the necessity of defining disability collaboratively as a dialogue between not only health care providers but also community members.
As importantly, since the early 1990s and especially in the last decade, disability scholars have argued (sometimes strenuously) that prenatal selection against genetic “impairments” is overly broad, ill-defined, and discriminatory, even eugenic, and that impairment is itself a poor indicator of future happiness, social integration, quality of life, or fulfillment, as many with impairments lead full rich lives on their terms.
Other disability scholars have pointed out that selection against “major” genetic impairments or “abnormalities,” or even the “risk” of specific disease phenotypes, will eventually lead to selection against minor instances, thus pathologizing and making eugenic any genetic variation, whether pathological or not. Rapidly improving technologies such as CRISPR-Cas9 have also sparked discussion among disability scholars of the often-blurred lines between a so-called “cure” and enhancement, as well as how some rhetoric around gene editing reflects the same utopian valorization of the perfected body of past generations of eugenicists. Even the language traditionally used for genomic variations – mutations – imply a stigmatizing departure from some established societal or clinical norm.
All of this must be balanced with clear evidence that prenatal screening, newborn genome sequencing, clinical genomic diagnosis, precision medicine, advancements in reproductive technologies and gene therapies have had enormous positive benefits for patients and their families, including those with disabilities. Improved education, better-informed choices about care, and life-saving therapeutics have led to extraordinarily improved health outcomes for individuals as well as groups. As important, the rebranding and relaunch of genetic counseling (previously “eugenic counseling”) since the 1970s has especially revealed the central importance of genes, genomes, and disability in discussions of disease, difference, identity, and reproductive choice in clinical settings and beyond.