On October 25, 2008, the What Sorts Network hosted a public symposium to examine, well, philosophy, eugenics, and disability in Alberta and places north. Four speakers were featured on the panel, Dick Sobsey, Simo Vehmas, Martin Tweedale, and Rob Wilson. This event was video recorded and over the next month we will highlight these videos on this blog. Videos will be featured on average twice a week, roughly every Saturday and Wednesday.
To download the full description of the symposium please click here.
We began this series with the first two parts of the presentation by Dick Sobsey, titled “Varieties of Eugenics Experience in the 21st Century.” This presentation amounts to a summary of various kinds of eugenic motivations, justifications, and practices from the 19th century to today with a good collection of anecdotes and trivia. Parts 3 and 4 are highlighted in the videos below. Transcripts are also posted below.
Highlights from part 3 include: criticism of Jukes as an assault upon the poor, best cement in the world, origin of the underground records for all the new york banks, continuing the Juke heritage, Dugdale’s findings, Oliver Wendell Holmes Sr. on Sterilization, measures of intelligence and the Flynn Effect, and stopping people from having children easiest through institutionalization.
Highlights from part 4 include: repudiation of most open practices of eugenics, rise of guilt and shame as tools of eugenic counselling, Margaret Thompson receives the order of Canada despite being a eugenic champion, proportion of deaths in neonatal care units made on the basis of quality of life, blurred bias between preventing a disease and preventing a person with a disease, the illusion of informed consent, and comparative “rational” justifications for suicide.
So I’m not going to spend a lot of time talking about the Jukes, other than there was this notion of pauperism. And pauperism involved being poor, and clearly you can see this as an assault on the poor, and it’s another story, but a lot of these people were cement miners and about that time, what they mined was natural cement. There was a discovery of Portland cement, which was not nearly as good as natural limestone cement but the problem with cement that was used prior to that time, which is still the best cement in the world, it’s called Rosendale cement, I’ll advertise for it, help my Juke brothers out (laughter), is that it takes about two weeks to harden. Portland cement or artificial cement that was developed about that time, you could pour it and you could work with it as a solid product the next day, and so very shortly Portland cement put the cement mines where these people worked out of business. And so at the time when the Jukes were studied, they were dealing with people who were in economic collapse because of the failure of the cement mines. Interestingly, those cement mines, there are entire mountains that were hollowed out by these Juke miners, today house all of the underground records for the New York Banks, for Standard Oil, there’s an entire city-atomic-bomb-proof city-underneath the ground in this hollowed out area that was actually built by the Jukes. So if we have a nuclear war, know that your bank records will be safe, there will still be a record if you owe the bank any money, and you can thank the Jukes for that. (laughter) They were principally being criticized for intermarriage and of course for having defective handicapped children. As a Juke a hundred years or so later I can tell you proudly that I’ve got a handicapped kid and an interracial marriage and we’re still the same people we always were (laughter).
So I won’t go all through Dougdale’s finding. The one thing I will point out is that I think it is quite famous that Supreme Court Justice Oliver Wendell Holmes made this decision about sterilization and whether it is constitutional and that decision was influential in the development of the Alberta act and other acts as well. But 52 years older, earlier, Oliver Wendell Holmes Sr., his father, actually was writing about eugenics in the Atlantic, and picking on those Jukes. So we’re still at war with the Holmes clan. In 20th century eugenics we start to get further emphasis on race, more refined views of intelligence, belief in deterioration of the intellect. One of the things that was really interesting is that as soon as we got the idea of intelligence being something we could test and measure, we got the idea that somehow everybody was getting dumber. And so this was partly driven by the fear that all of a sudden we were producing large numbers of people with less intelligence. Now it’s interesting because we could never measure it before, and some people will say that we can’t measure it now, but as soon as we started to measure it we assumed that it was getting worse. Is anybody here familiar with the Flynn effect? Basically what the Flynn effect says is: we’re getting smarter, nobody knows why we’re getting smarter. If you actually look at intelligence testing and a standardization of intelligence testing, they have to keep re-standardizing tests because people’s scores are going up and it’s irrefutable. Sort of the initial reaction, it’s happening all over the world, and it seems to be happening in spite of all these reasons that people say that we need to wipe out people in order to counteract the effect that our intelligence as a group is going down. It’s a huge effect, it’s not a small effect. It’s basically about one standard deviation every 50 years. This basically means that 100 years ago that the average person would test what would now be as mentally handicapped. Some people have tried to say that it’s because of education, maybe it’s Sesame Street. Interestingly, the strongest place you can demonstrate it are on Raven’s progressive matrices that are entirely non-verbal, non-cultural, etc. so that this effect is that this effect is actually strongest in measures of intelligence that are not affected by culture and learning, etc. And, why is it happening? I think we need to ask ourselves… when I started work here, I was tall. I have probably actually shrunk about half an inch, but when I get on the elevator with university kids now, they’re all taller than me. And it’s not just that I’m getting smaller. They’re getting a lot bigger. And if you look over a hundred years, the average height has increased drastically, and why is that happening? We can sort of say, well maybe there’s nutritional reasons, maybe there’s all these reasons. We don’t entirely know the reasons. But in the same way that we’re getting taller, we’re getting smarter. Here this is only sort of relevant because part of what was driving the eugenics movement was the belief that just the opposite was happening.
So in the 20th century we had mass institutionalization, sterilization, and in some cases we had actual euthanasia. So we had, for example, the T4 program in Germany where people were actually put in the gas chambers and the first gas chambers were actually developed in the euthanasia program. And it was both the equipment and the personnel from the euthanasia program that then went on to create the death camps like Treblinka and Sobibor, etc. So when they got the process down, they though “well maybe there’s all sorts of undesirable people that we could get rid of.” So, sterilization is the most obvious form that was practiced here in Alberta, however it’s not the most prevalent form. Institutionalization in fact was the major tool of eugenics and stopping people from having children by locking them up in sexually segregated institutions throughout their reproductive years was practiced not just in Alberta, but across Canada. And the only difference is that it was easier to justify that in some other way. However, if you look at the discussions about the creation of institutions in Canada and the United States, the intent is entirely clear that the purpose is primarily eugenic. We also had, and this was a shock to me, you know I grew up thinking about Clarence Darrow and the Scopes Monkey trial etc. If you actually look at Hunter’s Civic Biology, it’s a eugenic tome that I think we would find kind of disgraceful. But it’s interesting that that aspect of it is not carried forward when we look at our liberal traditions and how that battle was carried out.
So, getting into the second half of the 20th century, we had the coming of, really in the wake of World War II, the repudiation of the most open practices of eugenics, of euthanasia, of mass sterilization. And at that time, we had people like Fredrick Osborn, who were the head of the American Eugenic Society, who began to say, “we can’t force people anymore, it’s not popular, we need to convince them its in their own best interest, and we can use things like guilt and shame in order to convince people not to have kids that have problems.” Sheldon Reed is the person who actually coined the term “genetic counseling” and he did that when he was appointed as the head of the Dype Institute, which was an openly eugenic organization, which they referred to as an organization for “racial betterment.”
Here in Alberta, we had Margaret Thompson, who was on the eugenic board, also was the founder of the medical genetics department here at the U of A, and yes Lelani, she did get the Order of Canada in 1988, I looked it up. So, it’s interesting right now the Canadian Society for Genetics each year gives an award for the best PhD thesis in genetics, and that’s the Margaret Thompson award. This is a person who authorized castration of people in order to use parts of their testicles for medical experiments and was a major figure on the eugenics board. So today, most of what is happening does not meet the strict sense of eugenics in the sense that it’s not manipulating the gene pool. For example, if somebody decides not to have a child with Downe’s Syndrome because of genetic counseling, that child is probably not going to have children of their own, so it really has no effect on the gene pool.
It’s proven in part by our increased capacity to control life and death. As an example, right now there have been both Canadian and US studies that kind of look at deaths in the intensive care nursery, and the California one is the one I’m most familiar with, and I’m not sure about the precise percentages, but basically roughly 75% of infants who die in neonatal intensive care units don’t die in spite of treatment, they die because there’s a decision made that it’s the right thing for them to die at that time. And of those you can divide it into cases where medical treatment is deemed futile, in other words, treatment is withheld, but it’s well understood that even if treatment were given that they would not survive for very long, and cases where treatment would be effective but it’s deemed that their quality of life is not adequate, and that’s about 20% of the 70% of deaths. So, because we have decisions to make, then we have to decide on what basis we’re making those decisions. If we lived in a world where we didn’t have the technology to keep people alive, we wouldn’t have to make decisions about whether or not to keep them alive. Racial disparities exist, but I don’t think that anybody would say that most of the practices that are out there today are designed to improve the race. Certainly much of what’s done is well intentioned. I don’t think that there, if there are any instances, there are certainly very rare instances, of people who just have malice. I think there are instances where there’s disagreement about whether it’s really in an individuals interest or in a family’s interest for people to die. Continued bias on intellect and a problematic, in my view, blur of the distinction of preventing a disease and preventing a person who has a disease. So, you can pick any disease, like if you wanted to wipe out AIDS and you just said “Let’s carpet-bomb Africa with nuclear weapons” that would end a lot of cases of AIDS. But I don’t think we would think of that as a curative effect, in the same way if we prevent the birth of a woman, women have a much higher rate of breast cancer than men have, but I don’t think we would think of that as a prevention for breast cancer.
But in many of these practices, what we do is we end up with the notion that somehow we’ve reduced the disease, or cured the disease, or prevented the disease by eliminating the people who might have it. In many case I think certainly my objections is not that people have choices to make, but the information given is incredibly biased. So, people are often given dismal pictures of the outcomes for their children. They’re told that having a child with a disability has tragic effects on the family, that it does horrible things to siblings. These are not things that are actually supported by research and yet we continue to give people information like that in order to make decisions that then we refer to as “informed consent.” And in many cases what is being described by people is that when they actually refuse, that then they’re told it’s not their decision to make anyway. And it’s particularly problematic when people are told “well, I think you should authorize this DNR order” or “I think maybe we shouldn’t go ahead with this treatment” and then they make a decision and then they’re told that it’s not really their decision to make, that they’re being overruled by the physician, etc. Another tragic piece of this is that often people make those decisions thinking that they actually have control over that, and then later feeling guilty because they made a decision that they don’t even realize was really somebody else’s decision. Again, assisted suicide and euthanasia, I think, is another example where we refer to it as a rational choice, but the reality is it’s not more or less rational than anybody else’s decision to kill themselves. And I think if, as a society, if what we want to do is say “suicide is ok, and anybody who wants to commit suicide, we’ll assist them to do it,” that may be reasonable, but where we say, “if you happen to be a person with a disability or with a terminal illness, we’ll help you, because we think that’s rational, but if you want to kill yourself because your stock portfolio just dropped 75% in the last few weeks, we think that’s irrational and we’ll try to stop you.” In fact, the only way that that’s more rational is that we agree with the idea that that one person is better off dead and the other person isn’t.
That’s basically all that I want to say. I have to acknowledge my sponsors, and I’ll tell you that some of this comes from an article that my colleagues and I have put together, so I want to give Nancy Hansen and Heidi Janz some credit for some of this content.