Call for Papers and Presentations
A Two-Day Symposium and Scholarly Volume
“Irreducible Subjects: Disability and Genomics in the Past, Present, and Future”
May 18, 2022
The National Human Genome Research Institute and the University at Buffalo Center for Disability Studies are collaborating on a two-day symposium and edited volume entitled, “Irreducible Subjects: Disability and Genomics in the Past, Present and Future.”
We invite scholars to submit ideas to be one of six speakers at our symposium, with an additional opportunity to join a collected set of papers on the same theme.
Summary and Background
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.
A Call for Scholars
The National Human Genome Research Institute (NHGRI) seeks:
- To interrogate the meaning of disability today and its connections to genetics, genomics, and contemporary medicine
- To understand the revolutionary realities and potentialities of existing and emerging genome sequencing technologies and therapies in the context of vibrant discussions of disability and social justice
- To improve how scientists, clinicians and genetic counselors, and science communicators engage with the complexities of disability, building on numerous efforts already existing on the NIH campus and at NHGRI.
- To guide us as an Institute and the NIH as we seek to further improve our dialogue with the disability community about genomic medicine and the realities of disability in the genomic era
- To ensure that the promise of genomics and the concerns of disability studies scholars and historians are accessible to all.
In the symposium and the edited volume, we aim to bring together a broad and diverse range of scholars and others who have thought about or are working in areas related to:
- conceptualizations and boundaries of disability especially in the context of genetics and genomics
- “madness”/insanity, and “impairment”, especially in the context of genetics and genomics;
- disability, madness, corporeality, and “non-canonical” or “non-normal” bodies, especially in nineteenth- and twentieth-century science and medicine;
- dialogues between disability and madness and bio-and medical ethics;
- queer epistemologies and disability;
- disability, impairment, madness, and the ideas, ideologies, and lived experiences of race, ethnicity, and ancestry;
- disability, genetics, genomics and the psychological and behavioral sciences
Parameters for Submission
Title: Irreducible Subjects: Disability and Genomics in the Past, Present, and Future
Event: Two-day symposium (October 6-7. 2022)
Format: 6 presentations from invited speakers; 20 minutes each
Proposal length: 250-300 words
Brief biography: 50-100 words
Send to: email@example.com
Preferred Proposal Themes
Proposals related to the following themes are preferred:
- Science communication concerning genetics, genomics, disability, and “impairment”
- Genetics, genomics, disability, and stigmatizing language in science communications
- The “medical model”, ableism, and discussion of disability in genetics and genomics
- The Human Genome Project and disability
- Difference, disease, and disability in the genomic era
- Disability, health disparity and genetics and genomics, especially in the United States
- HIV/AIDS stigma, genetics, and disability
- Deafness as a Culture
- Covid, genetics and disability
- The development of genetic knowledge/power in the context of disability
- The commercialization of genetic information and its impact on understandings of disability
- Genetic or medical surveillance
- Genetics and medicine in carceral settings
- The medical or clinical encounter
- The pharmaceutical industry
- Eugenics, history and/or present manifestations
- Scientific racism, eugenics, and ableism
- Reproductive technologies
- Gene editing and enhancement
- Stigma and contemporary genetics and medicine
- Disease and cure in the context of genetics and genomics
- The phenomenology of madness and disability
- The social construction and lived experiences of race, ancestry, ethnicity, and their connection to disability and madness
- Choice ethics
- Knowledge ethics
- Reproductive politics
- Medical- and bioethics
- Medical education
- Genetic testing or screening (clinical and popular), and the complex legacies of eugenics and scientific racism
- Genetic testing, disability and social justice
- Social genomics and disability
- Neurodivergence, genomics and disability
Deadlines and Contact Information
Proposals due: July 15, 2022
Notice of acceptance: August 15, 2022
Two-day symposium: October 6-7, 2022
Follow up with authors: November 15, 2022
First draft of chapters due: May 31, 2023
Final draft of chapters due: December 31, 2023
Christopher Donohue, Ph.D.
National Human Genome Research Institute
Michael Rembis, Ph.D.
Associate Professor, Department of History
Director, Center for Disability Studies
University at Buffalo
Request an Accommodation
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Last updated: July 18, 2022