Irreducible Subjects: Opening Remarks
Irreducible Subjects: Disability and Genomics in the Past, Present and Future
October 6-7, 2022
Transcripts
Eric Green
Hello, I’m Eric Green, Director of the National Human Genome Research Institute, one of the Institutes and Centers that make up the U.S. National Institutes of Health.
Welcome to our first-of-its-kind, two-day symposium entitled, “Irreducible Subjects: Disability and Genomics in the Past, Present and Future."
Today’s event is intended to help people of all backgrounds better understand the complexities of disability within the context of science, particularly the science of genomics.
Speaking from evidence that I have seen as a scientific leader and from my personal experience as a physician-scientist, the lack of understanding of disability – and the unnecessary medicalization of disability – has led to vast differences in health outcomes for those with disabilities. For example, the data showing more deaths among those with disabilities due to COVID-19 tragically illustrates this kind of disparity.
And yet, disability is widely misunderstood -- which is shocking, considering that disability is common.
Sixty-one million adults in the United States live with a disability, according to the CDC. That is 26 percent (or one in four) of adults in the United States. And, as we age, most (if not all) of us will have some type of disability.
As you participate in this symposium over the next two days, I encourage you to keep these facts in mind.
We have assembled an internationally recognized group of scholars, researchers, and communicators who will present meaningful and important talks on disability and how it relates to genomics and genetics -- both historically and today. It is past time that we have conversations about disability, ableism, and the legacies of eugenics, and how genomics studies still have a long way to go to appropriately represent disabled individuals.
I look forward to the lectures and what will surely be a fascinating series of question-and- answer sessions with our experts and other symposium participants. Many of the talks will include frank discussions of the histories of scientific and structural racism, eugenics, hetero- normativity, and ableism, which may be disturbing to some of you.
The speakers will illustrate how these unscientific and unethical ideologies dehumanized individuals in the past; they will also highlight how they continue to make the field of genomics less inclusive, less equitable, and less responsive to the lived experiences of individuals with disabilities. The history of genetics and medicine includes very real examples where disabled people have been excluded, denied care, or subjected to eugenic practices. To fully recognize this history, we must reckon with our inadequate understanding of disability, just as we must acknowledge the rich history and culture of the disability community.
The scientific and medical enterprises too often see “disability” as a series of diseases that need cures and medical interventions, and view individuals with disabilities as simply being “less healthy” and having a “lower quality of life.” These inaccurate perceptions need to change.
As the leading funder of genomics research and its ethical, legal, and social implications, NHGRI encourages conversations about genomics and disability.
Each day, our clinicians, researchers, trainees, support staff, and extramural program officers encounter disability in some way. Many of our clinical research programs focus on reducing disease and disability in the context of rare and common genetic conditions. We have a duty to help educate the medical leaders of tomorrow on what our responsibility is, and even what using language like “reducing disability” means to those who are disabled.
The Americans with Disabilities Act was passed in 1990, which was right around the time that the Human Genome Project began. We may ask ourselves why we did not have these important conversations about how disability should be central to genomics and medicine 30 years ago? We should think about that question as the symposium unfolds.
I, like you, will be fully engaged with what the speakers and other symposium participants have to say.
With all of this in mind, I urge you to absorb this rich discussion. While the dialogue may sometimes be difficult to hear, I have no doubt that it will make all of us better informed.
Now over to Christopher Donohue, who has co-organized this symposium and is our co-lead for the History of Genomics Program in NHGRI’s Office of Communications.
Christopher Donohue
Hello, my name is Christopher Donohue, and I am an Historian at the National Human Genome Research Institute within the National Institutes of Health, where I co-lead the History of Genomics Program. I am a white man wearing a blue shirt, and I wear glasses.
I have the privilege, with Mike Rembis, of opening the first symposium at the National Institutes of Health which will specifically focus on disability and ableism, especially within the context of genomics, but as importantly will bring to our audiences the rich philosophical, sociological, and historical life of disability, especially in the context of biomedical science.
Over the next two days, there will be presentations on a variety of topics related to genomics and disability. We begin with a general overview of the key issues and then move to conversations around disability, eugenics, genomics…and reproductive autonomy, and concerns around life and death, disease and cure, well-being, and morbidity.
We then move to another needed discussion of the complex and disturbing connections between racism, ableism, heteronormativity, and ableism, in both the clinic and beyond.
We will end with a series of lectures and discussions on the irreducibility of disability, and what we think is a brilliant conversation about how to develop a truly dynamic account of disability in genomics that is truly responsive to the needs and aspirations of those with disabilities.
This symposium is long overdue, given the centrality of notions of ‘ability’ and ‘disability’, health, and disease to every aspect of genomic medicine. As importantly, the Human Genome Project was framed, in part, as a revolution in science, which would herald a new age of personalized medicine and individualized cures.
This framing was developed without much discussion of disability and the total absence of disabled voices.
As importantly, these conversations are vitally important too given that, as our expert speakers will describe, disabled individuals are still oftentimes locked out of scientific professions and medical schools, and oftentimes only included in studies of rare diseases- cohorts and protocols which impart an irredeemable “outsider-ness” and otherness to disabled bodies and disabled conditions.
The discussions we will have over the next two days are of vital importance too because disabled individuals are viewed as “biological different,” having differing health outcomes than so-called “typical” individuals because they are, by some clinical definition, “disabled.” And not of course because society makes it so difficult to be disabled.
Many in our society, especially in clinical contexts, view disabled individuals as having lower quality of life, diminished autonomy, and capacity. As the covid pandemic has graphically illustrated, and as our speakers will empirically prove, such vicious stereotypes lead to the death and debility of disabled people, as well as a relentless affirmation of normality and typicality.
Although the motivations are different and the historical circumstances have changed, there are disturbing parallels between the (intentioned or not) contemporary grading of disabled lives and livelihoods and historical eugenic rhetoric of disabled individuals being “less productive,” less deserving of care, and “less worthy” of life.
As our historical understanding of disability and the history of medicine becomes ever more fine-grained, we are continually confronted more and more with the realization that eugenic potentials are ever-present, where, for example, omnipresent prenatal screening and diagnosis as well as emerging gene-editing techniques could lead to the disappearance of certain forms of disability.
Indeed, in places like Denmark, this has already occurred. And the key question is whether what is preventing it from happening elsewhere is not due to ethical or cultural constraints, but simply availability of screening technologies.
As others will no doubt emphasize during this symposium, we need to move beyond seeing disability solely in the context of ‘disease’ and cure, in total ignorance of disability culture and history. And the question is, of course, how to do this?
The first step is to continue to have symposia like this one, which bring together a plurality of perspectives, which inspire meaningful conversations, and which do not shy away from difficult dialogue about problematic histories and present-day realities.
As importantly, we must acknowledge that genomics – which is absolutely revolutionary in its potential, leading to ever-greater medical interventions that save lives every day -- was developed with a very narrow concept of the body and its so-called “proper” function.
Genomic medicine is built around a similarly incomplete idealization.
Rosemarie Garland Thomson has discussed the “normate body.” This is a false and utopian abstraction developed around a gendered “everyman” who is totally autonomous, self-reliant, physically sturdy, and endlessly active and expressive without any difficulties. In a similar way, we have a “normate sequence” which over-represents European ancestry and “typical,” often male, research participants.
This overrepresentation ensures that for disabled people, precision medicine is the opposite of precise.
A fuller understanding of disability, particularly in the context of genetics and genomics is no doubt possible, but this will only occur when we, as we used to say, “stop being polite…and start getting real” about disability.
We need then to ensure that our discussions of disability resist easy (or comfortable) narratives, with the certainty that knowledge gained from these conversations will make genomics and biomedical sciences more inclusive and responsive. A genome science that really acknowledges disability is perhaps the only science worth having, otherwise it is incomplete.
So, with that I hope that all our audience have open minds and open hearts as we begin this journey. And it is my honor to introduce Mike Rembis, the director of the Center for Disability Studies and an associate professor in the Department of History at The State University of New York at Buffalo.
Michael Rembis
Welcome everyone. Thank you for attending.
Thank you to Chris and Britny and the other folks at the NHGRI.
I am excited about this program and its potential to create dialogue about these important issues.
As a way of introducing the broader themes and concepts addressed in this symposium, I would like to reflect for a moment on its title: “Irreducible Subjects.” The word “irreducible” means not able to be reduced or simplified. The idea that disability and disabled people are irreducible should undergird all of our conversations over the next two days. Disabled people cannot be reduced to their disability, and their disabilities cannot be reduced to their genes. The exciting field of epigenetics is revealing the complex interactions and systems that shape the development of the human body and its capacities. This, I think, speaks to the power of social, cultural, and historical forces to shape human bodies and experiences.
As a historian and disability studies scholar, I would like to emphasize that how we define disability changes over time and from one culture or group of people to the next. There is no easy or straightforward definition of “disability.” It is contested and contextual; it is also in many ways subjective and situational or perhaps, more accurately, relational.
Disability and disabled lives are shaped by more than just physiology, biochemistry, or genetics. Disability and disabled lives are shaped by race, class, ethnicity, gender, religion, and other ways of being in the world. And the way we think about disability is shaped by the ways in which we structure our societies.
Disability is part of who someone is; it is not all that they are. People live with and through their disabilities. Disability is not the end of life, and it should not disqualify people from living.
To the extent that it exists, the idea that disability is the “end of life” or an “end of life” condition is rooted in ableism – or the systemic discrimination against disabled people – and in efforts to eliminate and remove disability and disabled people from society. We do not need to look to the distant past or the most egregious violations of human rights to find examples of ableism or attempts to remove disability and disabled people. In various settings: in medicine and scientific research, in the formation of modern welfare states and carceral systems, in education, and employment, disability has been seen as something that disqualifies people from meaningful citizenship and full participation in society and in many cases the presence of disability has warranted the removal of people from society. This has been true in places where there have been more authoritarian regimes, and in those places were liberal democracies and advanced welfare states have been developed.
Disability does not mark the end of life. For many people disability is their life, and it forms a significant and meaningful part of their identity. For many people, disability may not even be considered a “condition” – in the strict medicalized sense of the word. Disability has been seen as a source of creativity and insight, and as a positive, generative embodiment. History is filled with disabled people commenting on the disabling effects of an inaccessible and unwelcoming society and not necessarily the limitations of their own embodiment. Positive, or at least neutral and unremarkable, accounts of disability, and scathing critiques of ableism, can be found throughout history. This is not something that is exclusive to our current political moment in which identity politics and movements for the rights of marginalized and underrepresented people abound.
For all of these reasons, I think it is imperative that knowledge of disability history and culture shape engagement with disability and disabled people – even among those researchers and practitioners who think that their work is somehow removed from or not affected by the social, political, and cultural contexts within which it is performed.
Science and medicine are human endeavors, and as such they are shaped by human relationships and by the social and structural forces that shape all of our lives.
Listening to disabled people, taking them at their word, acknowledging and celebrating the desire to live with a disability, while also accommodating those people who value and work toward “recovery” and “cure” are valuable orientations that I think we all should adopt.
We can see examples of these new ways of living in neurodiversity, mad positivity, disability pride, and other social and cultural movement led by disabled people.
We cannot assume that everyone who is disabled wants to die, to recover, or to be cured. Life is rarely that simple or straightforward. When we move past this assumption, we can begin to envision a new world structured by a new set of values and a new ethic of care; and new ways of thinking about and engaging with disability and disabled people.
I am grateful to be a part of this symposium and eager for the presentations that it contains – many of which engage with these new ways of thinking about disability and disabled people.
Thank you, and welcome!
Last updated: October 5, 2022