10 Commentary Two

Gregor Wolbring

Throughout history, people as individuals and as collectives have been judged regarding their abilities, whether physical or mental ones, with often negative, disabling consequences for the targeted individual or groups of people. The focus of this book is the practice of eugenics as a social movement toward “improving” human hereditable physical, mental, and other abilities while influencing the judgment of individuals’ and groups’ abilities—or disabling consequences, for that matter. This commentary chapter will examine several of the chapters through a lens of disability and ability studies.

WHAT IS DISABILITY STUDIES?

Disability studies is an interdisciplinary or multidisciplinary academic discipline that investigates the social situations that disabled people face. The discipline appeared rather late, in the 1970s, within the domain of other scholarly disciplines harnessing central human rights agendas, such as Marxist, feminist, and postcolonial studies and critiques. Ever since, disability studies has thereby challenged “the view of disability as an individual deficit or defect that can be remedied solely through medical intervention or rehabilitation by ‘experts’ and other service providers. Rather, a program in Disability Studies should explore models and theories that examine social, political, cultural, and economic factors that define disability and help determine personal and collective responses to difference.”¹ According to Dan Goodley, twentieth-century disability studies was associated with establishing the factors that led to the structural, economic, and cultural exclusion of people with (so-called) sensory, physical, and cognitive impairments.² One of disability studies’ main foci is the investigation and critique of ableism. The disabled people rights movement had already coined the term “ableism” in the 1970s, in order to question species-typical, normative physical, mental, neuro-, or cognitive ability expectations (see, for example, deaf culture and neurodiversity discourses) and the ability privileges (e.g., the ability to work, to gain education, to be part of society, to have a social identity, to be seen as a citizen) that normally come with species-typical physical, mental, neuro-, or cognitive abilities.³ Furthermore, the negative consequences have been highlighted, which emerged through disableism that one experiences if one does not fulfill species-typical physical, mental, neuro- or cognitive ability expectations.⁴ Indeed, as I have suggested elsewhere, “many disabled people perceive themselves in a cultural identity war with the so called non-disabled people where their self-identity understanding of being ability diverse and ability variant, as being a culture and not being ability deviant and ability deficient, is rejected by many.”⁵

DISABILITY STUDIES AND EUGENICS

According to its founder, Francis Galton (1822–1911), eugenics is a theory and movement that emphasizes the “investigation under which men of a high type are produced,” which should cover all kinds of abilities that aimed to “bring as many influences as can be reasonably employed, to cause the useful classes in the community to contribute more than their proportion to the next generation.”⁶ Disabled people form one group that has been a target of mostly negative eugenic practices (as a type of prevention of something undesirable), such as sterilization and prenatal and pre-implantation diagnostics aiming to prevent the birth of humans seen as impaired. In Germany, for example, the Reich Association of the Blind had published jurist Rudolf Kraemer’s (1885–1945) pamphlet Kritik der Eugenik: Vom Standpunkt des Betroffenen (Critique of eugenics: From the standpoint of one affected by it) since April 1933.⁷ The book formed the only well-founded critique of eugenics written up to that time by a disabled person. Kraemer’s project was to unmask the ideological nature of eugenic conceptions of inferiority. He warned against the forthcoming Nazi sterilization law and predicted that euthanasia of “useless” persons was a logical consequence of eugenic thinking as a whole.⁸ Also, he critiqued eugenicists for exaggerating the cost of caring for the impaired, for viewing impaired people as necessarily suffering, and for overemphasizing the importance of productive labour and military fitness.⁹ Kraemer’s views hint at a fundamental position that there was more to ableism than covered through disability studies.

WHAT IS ABILITY STUDIES?

Ability studies was introduced in 2008 as a field to investigate how ability expectations (“want stage”) and ableism hierarchies and preferences (“need stage”) come to pass, as well as the impact of such hierarchies and preferences on multiple subject formations, social relationships, and lived experiences based on diverse ability expectations.¹⁰ My 2008 article, entitled: “Why NBIC [Nanotechnology, Biotechnology, Information Technology and Cognitive Science]? Why Human Performance Enhancement?,” exemplified how sexism and racism have been justified through specific narratives, in which one powerful group decided that certain abilities were essential and that other groups lacked these “essential abilities.”¹¹ In the case of sexism, the ability expectation of male rationality and the labelling of women as irrational was and still is used as an ability expectation of human cognition.

ABILITY STUDIES AND EUGENICS

Given Galton’s early vision of eugenics, negative eugenics was often instrumental in targeting the poor and other groups seen as physically or mentally impaired. It was also used to justify racism, anti-Semitism, and other negative-isms targeting other groups. Positive eugenics was achieved by encouraging those with desirable traits to continue to reproduce (see, for example, the Nazi Lebensborn program).¹² In the future, positive eugenics might be achieved through a synthesis of desired genomes (synthetic biology) in combination with the prospect of the artificial womb. Eugenic thinking could then be applied to enhance humans beyond the normal, through for example somatic and germ line genetic enhancement. Indeed, in recent years the debate around genetic modifications has intensified under the term of “gene editing,” and through these discussions the debate has been pushed to accept enhancement directions as well. The debate has seen many supporters among ethicists and not much explicit criticism, as is evidenced by the 2015 International Summit on Gene Editing (see also the foreword by Guel A. Russell).¹³ The only prerequisite would be that these interventions give an advantage beyond the normal enhancement over the physiological functioning of others and that this advantage be durable and benefit the genetic stock.

In chapter 1, Henderikus J. Stam and Ashley Barlow write about John M. MacEachran (1873–1947) and eugenics in Alberta. This chapter reflects on the discourse around MacEachran, who was an influential and highly decorated academic as well as the chair of the Alberta Eugenics Board (AEB) from 1929 to 1964. From a disability studies perspective it is of interest to know how eugenicists became involved in the negative treatment of people labelled as “ability-impaired” today. There were many contemporary academics like MacEachran: for example, Margaret Thompson (1920–2014), a member of the AEB from 1960 to 1962, the former president of the Genetics Society of Canada, and a member of the Order of Canada. She fervently defended the sterilization practice in Alberta during the lawsuit brought by Leilani Muir against the Alberta government in the 1990s, saying that “some causes of mental defectiveness are hereditary and when the eugenics board was created there was a real danger of passing on those causes because contraceptive choices were limited. Today, people at risk of inheriting or passing on a defect to their children have the pill and other contraceptives available. They can seek genetic counselling before a child is born and can abort a child likely to be defective.”¹⁴ Thompson mentioned health and medical professionals in many of her publications, in which she dealt with genetic connivance—such as genetic “carrier detection” and physician-induced “termination of pregnancy”—within wider eugenic practices.¹⁵

Many put forward that people should not be judged on their eugenic history. Cases in point include, for example, the “famous five”—progressive women who stand in high regard in Canada for their fight for women’s rights despite their connections to the eugenics movement.¹⁶ In the case of geneticist Thompson, however, she was still defending the practice of forced sterilization as late as 1995, when it had become widely critiqued in Canadian society, but she faced no consequences for her views. From a disability studies perspective, the lack of consequences for the deeds of eugenic protagonists is quite troubling. That the eugenic leaders met with no negative sanctions might be one reason why public education—at least in Alberta—largely ignores the breadth and scope of Canada’s eugenic past. At least, I assume it is not taught, given that nearly all students taking my first year “Introduction to Disability Studies” (CORE 205) course at the University of Calgary as part of their Bachelor of Community Rehabilitation degree had never heard the term “eugenics” at high school. It is apparent that people are often not aware of the eugenic background of prominent public figures such as Margaret Sanger (1879–1966), the founder of the Planned Parenthood movement, or Woodrow Wilson (1856–1924), the twenty-eighth president of the United States.¹⁷

However, the lack of investigation into eugenic pasts is not only linked to people covered through disability studies. Paul Weindling’s chapter, “Too Little, Too Late: Compensation for Victims of Coerced Sterilization,” also describes the reluctance to prosecute. As Weindling suggests, “the criminality of coerced sterilization was slow to be recognized even after the Nuremberg trial prosecutions for the medical crimes under German National Socialism. The problem was simply that the German authorities declined to accept the criminality of the Nazi-era sterilizations.”

In chapter 2, “The Consequences of Eugenic Sterilization in Alberta,” Douglas Wahlsten discusses the issue of science’s sales pitches and the uses of science as a tool to justify social policies. Disability studies pursues a long-standing narrative of questioning many of the claims used to sell eugenic practices—claims that have often been ignored in the wider scientific and public literature. Let me here also discuss chapters 4 and 6 through the lens of media responsibility, a topic that is also approached from both disability studies and ability studies angles. Mikkel Dack’s contribution, entitled “The Alberta Eugenics Movement and the 1937 Amendment to the Sexual Sterilization Act,” highlights the unique situation in which Alberta increased its eugenic actions virtually unopposed by government officials, health administrators, and the general public in the province when the practice had been largely discredited in other countries. Dack identifies four reasons for this phenomenon: (1) that Alberta experienced a mass influx of immigrants, resulting in growing fears that “inferior stocks” were polluting the local community, (2) that the general public had been unaware of the sterilization laws themselves, since such legislation had been confined to conversations and debates by politicians and health administrators, (3) that the public was unaware of the racial eugenics programs in Nazi Germany, the discrediting of hereditary science, and the decline of eugenics movements throughout North America, and finally (4) that there were widespread popular beliefs that eugenics legislation would improve the economic conditions of the province and that sexual sterilization helped reducing frivolous government spending.

If these four points were really valid, one could make the argument that the media had either missed their obligation to support charitable initiatives or that they formed an active part of the problem. Diffusion of knowledge through printed media was seen as an essential part of the fabric of society that enabled social participation.¹⁸ In the 1936 case of Grosjean v. American Press Co., the US Supreme Court emphasized the important role of newspapers and magazines in informing the public regarding national affairs.¹⁹ If the four points above were correct, then this suggests that social participation is highly limited, because the media did not inform the public accurately on national affairs such as the actual danger posed by immigrants, if any. Media violated their responsibility to sustain political freedom and stable social order.²⁰ The four points further suggest that the stable order supported by contemporary societies was that of the powerful. The media have thereby helped to set the discussion agenda and created the boundaries within which debates have taken place.²¹ Further, if the four points were correct, one needs to say that the media set boundaries biased toward the powerful. This conclusion as to the problematic role of the media is also reflected in chapter 6, “ ‘New Fashioned with Respect to the Human Race’: American Eugenics in the Media at the Turn of the Twentieth Century” by Celeste Tường Vy Sharpe, who argues that the American print media discourse on eugenics from 1900 to 1915 blended established nineteenth-century preoccupations with racial taxonomies and reproductive control. During the Progressive Era, ideas of social control and collectivism thus situated eugenics as a response to old and new social and political problems alike.

From a disability studies perspective the role of the media is important not only during the historic past but to modern societies today. Many investigations by disability studies scholars have provided evidence for a negative and one-sided coverage of disabled people. Article 8 of the UN Convention on the Rights of Persons with Disabilities posits that state parties undertake to adopt immediate, effective, and appropriate measures to combat stereotypes, prejudices, and harmful practices relating to persons with disabilities, including those based on sex and age, in all areas of life. In addition, the “Convention requires States to take steps to encourage all organs of the media to portray persons with disabilities in a manner consistent with the purpose of the Convention (art. 8 (2) (c))” because of “the important role that the media play in both reflecting and influencing public opinion.”²²

“IS IT ALL HISTORY?”

As stated earlier in this chapter, eugenics is not just a historical phenomenon but a contemporary and future one as well. What changes are the scientific and technological methods deployed to fulfill eugenic goals. Many of the problems intrinsic to the historical eugenics discourse are still evident and pertinent today. Disabled people are still often portrayed in very negative ways, and just as Kraemer’s Kritik der Eugenik was ignored, so for the most part are those who question the negative narrative around disabled people today. Various groups of immigrants were and still are seen in a negative way and feel disempowerment and social neglect (as, for example, mentioned in Diana Mansell’s chapter, “The Involvement of Nurses in the Eugenics Program in Alberta, 1920–1940”). Marc Workman includes in his commentary a section related to immigration and disabled people, outlining the still unresolved problem of immigrating as a disabled person to Canada (see chapter 9)—a problem profoundly questioned by the disability rights movement in Canada. The views of health professionals were and still are important in discussions around disabled people and eugenic practices in their broader scope, as I have outlined here. Mansell in chapter 3 outlines the role of nurses and other health professionals in promoting eugenics from 1920 to 1940 and Erna Kurbegović in chapter 5 also describes the role of medical professionals in promoting eugenic practices. Yet it is well documented that health professionals today, including nurses, often have negative views of disabled people, and of course, health and medical professionals are often involved in the discourses and practices around genetic-testing programs today.²³

People quite often are not aware of the contemporary reality of eugenic practices and future potential eugenic practices (see, for example, in the human enhancement discourse),²⁴ nor do many know the history of eugenics. This history is essential for the understanding of current discussions and debates about recent “newgenic” developments in the biomedical and sociobiological discourse.