In the Special Interest Research Group for Ethics’ publication The Quiet Progress of the New Eugenics, following IASSIDD’s 16th World Congress in Glasgow in 2019, its authors (Prof. dr. Hans Reinders, Prof. dr. Tim Stainton and Prof. dr. Trevor R. Parmenter) "consider recent developments in terminating human life affected by intellectual and developmental disability". These developments include "ending the lives of severely disabled prematurely born infants, terminating pregnancies after positive outcomes of genetic screening and testing, and ending the lives of persons with IDD by means of euthanasia". The justification for these practices is rooted in ideas about a strong correlation between IDD and a poor quality of life, which, as the authors argue, ignores "alternative views, most of all the views of persons and families directly implicated who do not consider living with IDD identical with a life full of suffering".
Some readers expressed concerns about using a term as abhorrent as eugenics to describe these developments. It is indeed a concept that is widely rejected as anachronistic, as Prof. dr. Hans Reinders recognizes. To completely reject this direct comparison however, would be to also reject the unresolved and deeply rooted undercurrents of ableism that are at the core of both 'old' eugenics and certain present day philosophies and practices in science, healthcare and beyond.
Comparing 'old' and 'new' eugenics, as is done in this debate from several different perspectives, can help to navigate the impact of ableism on people's lived experience. It opens up space for the examination of whether it is truly too far-fetched to argue that eugenics never disappeared, but rather took on a new form.
The Quiet Progress of the New Eugenics can be accessed here: https://onlinelibrary.wiley.com/doi/abs/10.1111/jppi.12298
In her biography on University of Dundee’s website, Professor Campbell is described as an interdisciplinary scholar-activist and non-traditional academic, being biracial, disabled, LGBT, and from a religious minority background, who acknowledges the importance of knowledge standpoint and the exclusionary practices of the academy. It is apparent that Professor Campbell is exceptionally broadly oriented in her research focus, which includes Studies in Ableism, Decolonised Knowledges & Methodologies, Critical Legal Studies, ‘Area’ Studies, and Religious Traditions. Her publications include monumental works such as Contours of Ableism – The Production of Disability and Abledness (2009), which, as stated by Palgrave MacMillan’s summary, “[challenges] notions of what constitutes ‘normal’ and ‘pathological’ bodies”, and many papers examining intersectional identities in geographical, legal, and religious contexts.
In her capacity as scholar-activist and non-traditional academic, she delivers her work with a much-needed passion and conviction, which she also showed during a Webinar on New Eugenics organised by DSiN and IASSIDD on June 25th 2020. Having been intrigued by her suggestion that the connections between the various episodes in the history of eugenics are best explained as mediated by the reality of ableism driving them all, Professor of Ethics Hans Reinders was eager to explore this topic more deeply, and sent out an enthusiastic invitation that was gladly reciprocated. Professor Campbell knows what it means to Value Diversity, and we are honoured to have her as our key speaker for the New Eugenics track of the congress, where she will be speaking on the comparability and extant correlations of certain current responses and practices with eugenicist traditions.
Fionn and Jonathan run a social enterprise, Fionnathan Productions. Fionn is the first learning disabled person to self-design and manage a government-funded support program in Ireland. They’ve worked hundreds of hours for local and national government, through task forces and working groups on Community Inclusion, Service Reform, and UNCRPD Compliance Assessment. They are longstanding members of the Inclusive Research Network of Ireland and Global Ambassadors for Citizen Network. As film makers, they’ve produced projects with various support organisations and advocacy groups. Their Happiness research project comprises 500 filmed interviews asking what people love about their lives. Including both common citizens and leaders at the tops of their fields, their Youtube channel has over 2 million views. They guest lecture annually on social care reform to ten Irish colleges, and present at academic and family leadership conferences around the world. They are peer reviewers for the Journal on Developmental Disabilities, and contributors to numerous books. Fionn is one of five trustees living with Down syndrome (and the only non-UK resident) on the National Down Syndrome Policy Group, who recently achieved a Parliamentary Bill to create a Down Syndrome Act. If passed, it will be the first of its kind globally. Having consulted for progressive service provision agencies in eight countries, and advised dozens of individual- or family-led support projects, this son and father team rarely slows down. As Fionn often reminds him, Jonathan is one of the luckiest dads on the planet.
Panelist: Dr. Fabrizio Fea
Dr. Fabrizio Fea is a Fellow of IASSIDD, Vice President of EASPD and the Medical Director of Scuola Viva, which is an EASPD member organization that has created a close-knit community for people with disabilities, offering education through workshops, sports, art programmes, and much more. He has additionally helped to establish the American Best Buddies programme in Italy, which combats loneliness and promotes close friendships between people with and without disabilities. In this past year Dr. Fea has committed himself to try and navigate COVID-19 in order to keep the Center for Rehabilitation of Scuola Viva as safe as possible. Not only has he been a strong advocate for the improvement of the inclusion, chances, and overall quality of life of people with disabilities, Dr. Fea can offer us an important perspective on new eugenics from a practical, medical background, rooted in his clinical experience.
Panelist: Ivan Brown
Ivan Brown, Ph.D. (Special Education) is an IASSIDD Vice-President for Policy & Education, Director of IASSIDD’s Academy for Education, Teaching and Research, and IASSIDD’s SIRG Coordinator. Retired from the University of Toronto, he is now an Adjunct Professor of Disability Studies at Brock University, Canada. He is an internationally recognized expert in numerous sub-fields of intellectual disability, with a particular focus on quality of life and family issues. Currently, he coordinates more than 25 family quality of life projects in various countries around the world, and is a past co-chair of IASSIDD’s Quality of Life SIRG. Professor Brown has published widely in the academic literature and has written or edited fifteen scholarly books. He was the founding editor of the Journal on Developmental Disabilities, and continued to serve for many years as its editor. He has been active in local disability organizations, and his work there has been recognized by several awards. Professor Brown has been an active presenter at scientific conferences, with more than 200 presentations and keynotes to his credit in the past 30 years. He has also presented numerous IASSIDD Academy workshops around the world , and has been a frequent guest speaker on disability in many countries.
As a research master student at the University of Groningen, Lesley Verbeek is aiming to specialize in Disability Studies within the Arts, Media & Literary Studies programme. She is interested in tracing points of possible connection between DS and academic fields such as Film Studies, Indigenous Studies, Ecocriticism and Critical Animal Studies.
She will bring a perspective on new eugenics that ties it to cultural products that, although not directly or literally threatening lives, contribute to a dangerous erasure of realistic, fair, and positive representation. This includes the erasure / negative portrayal of disability in popular films, and the often post-disability worlds that are presented in speculative (science) fiction, in which human ‘enhancing’ technologies such as genetic modification and cyborgization frequently play an important role.
Professor of Ethics Hans Reinders (Vrije Universiteit Amsterdam) will be leading the discussion of the New Eugenics track. He is intimately familiar with ethical issues surrounding medical, social and policy developments, which include questions about the impact of these developments on the appreciation of living life with a disability, inclusion and participation, and quality of life and healthcare.
His previous extensive work with IASSIDD and with the topic of new eugenics make him a well-suited debate leader who will be able to maintain a clear overview on the presented arguments.
Johannes (Hans) S. Reinders (1950), emeritus Professor of Ethics, received his PhD from VU University Amsterdam. From 1995 till 2016 he served his Alma Mater as Professor of Ethics, and Professor of Disability and Ethics in Long Term Care. He has been a visiting scholar in philosophy at the University of Notre Dame and a resident scholar at the Center for Theological Inquiry in Princeton. In 2007 he was the co-founder of the
European Society for the Study of Theology and Disability (ESSTD) and acted as General Editor of the Journal of Disability & Religion from 2010 till 2016.
His main field of academic research has been ethics in long term care. Among his most well-known books are The Future of the Disabled in Liberal Society: An Ethical Analysis (the University of Notre Dame Press, 2000), and Receiving the Gift of Friendship, Profound Disability, Theological Anthropology, and Ethics (Eerdmans Publishing Company, 2008). He edited a volume called The Paradox of Disability: Responses to Jean Vanier and L ’Arche Communities from Theology and the Sciences (Eerdmans Publishing Company, 2010). His latest book (in English): Disability, Providence, and Ethics: Bridging Gaps – Transforming Lives, Waco TX.: Baylor University Press, 2014.