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Transcript: What Does Eugenics Mean To Us? Episode 4


Episode 4: Confronting ableism in eugenics
 

Subhadra Das: Welcome to What Does Eugenics Mean To Us?, a podcast from the UCL Sarah Parker Remond Centre. I'm your host, Subhadra Das, and for the last ten years I've been researching the history and legacy of eugenics at UCL, in the sciences and beyond. In this podcast I've brought together some brilliant researchers for some fascinating and insightful conversations across the disciplinary divides. Together, we are going to discuss, examine, critique and explode eugenic thinking. How are racism, ableism, sexism and class warfare embedded in our ways of thinking about and perceiving other people? What can we do to challenge and dismantle those ideas and structures? As a university and a community of researchers: what does eugenics mean to us?

In this series, I’ve been talking to lots of colleagues and friends about their work here at UCL in order to understand, challenge and deconstruct this university’s legacies of eugenics. So far, my own work in this area has been in the history of science, particularly the life and work of the Victorian scientist Francis Galton, and I have mainly looked at him through the lens of critical race and racialisation. However, as we’ve touched upon in other episodes, eugenics was not just about racism. There are, in fact, many other isms that were seeded and that continue to grow today, fed by eugenic thinking.
 
In this episode, I want to look at ableism. To do this, I sat down with Nicole Brown and Nora Groce. We talked about ableism, barriers of access at universities like UCL, and what someone like me, who is trying to be an anti-ableist ally, can do to build more anti-ableism into my own work and to acknowledge, confront and disassemble eugenic thinking.
 
Nicole Brown is a lecturer in education at the Institute of Education here at UCL, and the editor of two books, Ableism in Academia, Theorising Experiences of Disabilities and Chronic Illnesses in Higher Education, and the follow-up Lived Experiences of Ableism in Academia, Strategies for Inclusion in Higher Education, which is due out in May 2021.
 
Nora Groce is Leonard Cheshire Professor of Disability & Inclusive Development at UCL. A medical anthropologist, Nora works on issues of global health, international development and human rights, with a particular focus on global disability issues.
 
Nicole, can I ask you, what is ableism? Because I think this is something that we often think we know maybe what it is, but maybe we don’t understand really the full extent of it.
 
Nicole Brown: So, ableism is one of those terms that’s obviously, like any other term, developed over a period of time, and different scholars put their own slant on the definitions, and also it depends on disciplinary conventions as well, how actually people interpret the term in itself. But, generally, I would say that the best explanation for me is that it’s a term that describes all sorts of isms that are non-normative. So, basically, you’ve got an expectation of what’s normal and what’s normative and as soon as you don’t fit within that criterion, that’s what ableism is all about.
 
That’s the description of what it means to experience ableism, it's that kind of comparison between what’s expected, what’s normal, what’s standard, and that we basically don’t fit that mould. To be realistic, not many of us will fit that role of being perfectly able-bodied, able-minded, perfectly healthy, pretty, fit, healthy, athletic; and anything that kind of does not fit with that mould, that’s how I would suggest that’s the experience of ableism.
 
Subhadra: What’s interesting about this is that it goes to demonstrate, as a structure of thought, just how broad a church these isms can be, because ‘normal’ encompasses really so many different things. The way eugenicists historically framed what we think is normal was based on very particular ideas of who they thought should be having children, and so they framed normal as cisgendered and heteronormative, and then on things like physical appearance and intelligence, which we know relates directly to racism but relates to ableism too. Nora, do you have anything to add to that definition?
 
Nora Groce: The issue is also that the term is relatively new in terms of it’s just coming to the fore now, but it encapsulates a lot of what people have been trying to say for many years, generations actually, around the issue of disability. So, it’s one of those terms that, once you hear it, you go, aha; that puts together what otherwise often has been divided by different types of disabilities, different age groups, when you talk about global disability issues. And remember that, roughly 15% of the world’s population, one billion people worldwide, according to the World Health Organisation, live with a disability.
 
So, there's so many different people who fall into the category. Ableism is one term and a new term, but a very powerful one that brings together people with many different backgrounds, many different types of disabilities and many different experiences. You can talk about it in education, in employment, in social justice. So, it’s one of these terms that, again, is very useful to move to the next step of kind of a broader discussion on real issues of concern to us all.
 
Nicole: I totally agree with what you’re saying, Nora, but what I find interesting is also, with the term ableism, it’s not just a structural sort of like non-normative or normative question, it’s also that we actually grow up with that internalised version of it. As a person, you’re born into some kind of society thinking this is what your life looks like and this is what you have to expect. And you kind of expect to be able-bodied, able-minded, and healthy, and pretty, and sporty, and god knows what, and you kind of expect to, potentially, be ill or aching when you’re 90 years of age because that’s part of a life trajectory.
 
But obviously, as soon as someone is hit with any kind of condition, chronic illness or disability, throughout their life, that is hitting peoples’ identity as much as their experiences, because it doesn’t fit with that idea, that we have internalised, of what’s normative, expected, and brilliant and perfect.
 
Nora: That’s a really important point but also, importantly, there’s a question that goes along with that which is, if not, why not? If you don’t come up to those norms, then why don’t you? And it’s your job to explain where you fall short, as it were. So, suddenly the burden is on you, not on the broader society.
 
Subhadra: And that brings us quite neatly onto the next thing I was going to ask you, which is we’re starting to have conversations about racism in the academy. We’re starting to acknowledge that this is an issue even here at UCL, and so we’re starting to think about how the university is racist in terms of its structure. I think it’s also fairly safe to say, given the title of a couple of your books, Nicole, that the institution is also ableist. But this is very complex, isn’t it? It’s also about how we perceive ourselves and also how ableism makes us think that we are the problem that we ourselves need to solve.
 
Nicole: Absolutely, but I think the university itself, even like the building, and I’m not talking about structurally as in the organisation and the people within in it, even just the architecture, the building itself, that’s kind of the symbolic power of it as well. There’s this book by Jay Dolmage, Academic Ableism, and he starts out by describing the typical university building, which is a grand staircase, leading up into the tower of knowledge.
 
Well, we have got that at UCL as well, obviously, with the grand staircase and it’s pretty, it’s beautiful, I love it, but obviously it means that anyone with a wheelchair is relegated to the back entrance, to the vehicle entrance, to the rubbish bin lift, elevator, whatever it is, because that’s what the reality is for somebody who is disabled in that kind of environment.
 
Again, I do appreciate that the architecture is there and that’s not necessarily people of nowadays fault, because that’s been there for a long time now, I do appreciate that, but at the same time we have to ask ourselves, what is the message that we are sending to those people? And is there a way of separating out this staircase and creating a new entrance with part of a staircase, to maintain the symbolic power, but also creating an accessible route to the building.
 
So, it’s not just about the people and the organisation as such, in terms of the structure. It is actually already even the building itself that’s quite a powerful reminder of how ableist actually academia is.
 
Subhadra: The thing that you’re describing suggests to me that it’s almost about widening access, the idea that there is an accessible campus that is accessible for everyone, because the way things are right now, it actively leaves people out.
 
Nicole: Exactly, and obviously, within the organisation, then we’re talking about a universal design for learning, for example. So, where we are actually trying to be as open to different needs and wants as possible. And that’s the other thing, we do still have to be realistic about this because we cannot fulfil everybody’s needs 100% of the time; that’s just not possible. There are so many needs that are actually conflicting, and that’s one of the problems that we are finding as well.
 
For example, as we are sitting here on a computer screen with a few people in the room, there are the kinds of people that find too many videos going on at the same time really difficult and distracting, and they suffer from sensory overload. So, ideally, for those people, all of us would have our video switched off. But then there are the other people amongst us who are hard of hearing, who will need to have this video on, so that they can lip read. And that’s the problem here, these are conflicting needs and you can’t actually say this need is more important than that need; in a way, you have to, but that’s trying to find a consensus and trying to find a compromise. So, yes, 90% of the time, you can meet 90% of the needs of 90% of the people, but it’s never going to be 100% and that needs to be said as well.
 
Nora: I couldn’t agree more. It will never be 100%, but you can set up adaptations to make it to be as inclusive as possible. I think an important issue also is that we pose this as a problem often, and it shouldn’t be a problem. It’s really a question, I like to think of it as enlightened self-interest. It’s not a question of making special allowances for people who aren’t contributing. The issue is that we’ve got a lot of problems in the world, we can use as many people as possible contributing solutions right now.
 
And that, to my mind, is what universities should be doing; so that we can address things like racism and ableism that keep people from being part of the solution, or people with a variety of backgrounds that can add to our insights- otherwise we all lose. And if we frame it as taking advantage of peoples’ abilities as opposed to problems, then I think that we already start with a very different conversation.
 
Nicole: I agree with you. Can I just ask you a question? One of things that I always say is that we should try and actually bank on the strength in numbers. Like you said, the more people we have within that, the easier it is then to actually change things because we’ve got strength in numbers. But, at the same time, I have been criticised for saying things like that, because it kind of lumps peoples’ experiences together, when actually every experience is individual.
 
Again, I totally understand that. My experience is not your experience, is not the next person’s experience. I totally understand that. But in terms of trying to push for change, I still believe that we actually do need the strength in numbers and try to kind of bring together as many experiences as possible. So, can I just ask, how do you stand on that, what do you think about that?
 
Nora: For my part, I think that a lot of what we do in academia is we take lots of experiences and we abstract to another level. I’m a social scientist, I’m an anthropologist actually, so we look at the individual and things like oral history is very important, but so is the next level. It doesn’t have to be either / or. To my mind, individual experiences often feed into what we can say about group experiences or the breadth of experience.
 
So again, I think part of the problem with a lot of these discussions is we push people into it’s a problem or it’s not a problem; it’s either the individual or the group. In normal life, we seem to be able to adapt to a range of things depending on what the needs are. There are some things that apply to everybody, for example human rights apply to everybody. No matter who it is, those rights should be universal. There are other things that are really unique experiences. But we do this all the time in all of academia. We talk about literature and then we talk about specific authors, for example. We talk about all of history and then we talk about the works of Herodotus. We don’t have to make decisions in lots of other fields. So, we shouldn’t have to be pushed into a corner with this.
 
Subhadra: I’m liking this. I think it’s interesting for me to hear but it’s also, I’m sure, going to be interesting for our listeners to hear, just how much of this is about collaboration and listening to each other, and trying to work out what the right answer and the best thing is to do. But before we try to solve the problem, I want to get a clearer picture of the problem. What I’m hearing from you is about how there are structural barriers, both physical barriers but also societal and cultural barriers, that are shaped against some people. I’m interested to find out, what was it that shaped the barriers that people are coming up against today?
 
Nora: There is a range of things. It’s all of history. If we’re talking about ableism, we’re talking about assumptions of what people with a range of disabilities can and cannot do, but we’re also talking about not just what they may be limited by in terms of disability but, very importantly, we’re talking about a lifetime of experiences. It’s a feedback loop. So, if you’re born with physical impairment, for example, or you’ve had polio at a young age and you can’t walk, then often, in many countries, you still are denied basic education, elementary school education, grade school or high school education. So, by the time we get to universities, oddly enough, people who otherwise could contribute to things have been left out of this entire loop of education, social inclusion, civic involvement. So, it’s not just one thing, it’s a lifetime; it’s like death by a thousand small cuts. You’re denied one thing after another and it often starts very early in life.
 
We’re talking right now about ableism but you could also talk about racism in the same way, where advantages or opportunities for inclusion- you’re just left out, and so by the time you come to be an adult, you’ve already suffered a range of issues / exclusions that are completely unnecessary, but that has deprived you of the background that gets you to the point where you can be a fully participating person in your society, with the same benefits and advantages of many other people.
 
Nicole: I’m looking at the same situation but from the experience of the person who is becoming disabled, acquiring some kind of disability, or chronic illness or condition, or whatever, throughout their life. In that case it goes that little step further. So, it’s not just that it’s chipped away, the injustices and all of that, on your lived experience, it also means that, within the current situation of higher education, for example, people don’t feel comfortable to say I have got whatever disability, or chronic illness, because they know that doing so would push them into the disadvantaged minority group, and they don’t want to do that.
 
So, there is a serious issue here, and that’s an attitudinal issue, for the person disclosing, but also it’s quite a bad sign if nobody feels that they can actually disclose. So, it is an attitudinal problem within higher education as a sector as well, that obviously there is this discrimination, there is the disadvantage - I know that I have got x, y or z, whatever it is, but I can’t really say that, I have to hold back. I’m lucky enough to pass as somebody without disabilities because my disability is invisible, but what does that tell us about the kind of situation that we’re dealing with? What does that tell us about the society we are in? I think that’s at the heart of everything and that’s really quite shocking to me.
 
I mean in my experience, the reality of this is that people who have got some kind of chronic illness or condition will basically come up with this cost benefit analysis of what the costs are of disclosing their conditions and ‘admitting’ their faults and their weakness to the public, against the benefit of doing that. So, obviously the cost is the stigma, the fact that you are potentially discriminated against, the fact that you are not able to be part of the conversation in the same way that a non-disabled person would be. But what’s the benefit? I mean if there’s no real benefit, then what’s the point in actually disclosing in the first place?
 
Subhadra: Eugenics, particularly eugenics in terms of not simply some of the scientific ideas that were involved with it at the turn of the 20th Century, but also the fact that those ideas extended beyond the realm of science into politics and into the ways in which society has been organised, that eugenic thinking is, to some degree, framing these barriers, is it not? I’m also interested to know in what kinds of ways those ideas are still with us.
 
Nora: Eugenics, which I know you’ve done a number of things in this series, in terms of - we could call it the pseudoscientific at this point - ideas of eugenics were very problematic. They coalesced in the 19th Century and up through the 1920s-1930s and they became part of mainstream science and popular thinking in many countries. Obviously, after World War II, especially after the Nazi’s use of eugenics in eliminating millions of people, it became a less fashionable science, but it didn’t leave the scientific community. Even if we don’t label things eugenics, and even if the popular press doesn’t label things eugenics, and that’s in terms of both the racism and ableism, it’s still very much with us. And it’s a real problem because people think they know; they make assumptions based on incorrect thinking about peoples’ abilities; they rank people in terms of their heritage, or their disability. We now know that all this kind of thinking is problematic, it’s destructive and it’s getting in the way of moving forward. So, it’s a real problem.
 
And again, it’s still very much with us in many sciences and many disciplines, and it certainly is when it comes to both the social sciences and the medical sciences, and it’s something that we need to be keenly aware of. Certainly, when it comes to issues like deciding who lives, who dies, who gets appropriate medical care; even though we now should have human rights laws in place, and the UN Convention on the Rights of Persons with Disabilities, what we’ve just found out with Covid, that the decisions in terms of people with disabilities dying in all countries at rates much higher than people who were non-disabled, and it had little to do with their disabilities in many cases, but rather where the allocation of medical resources was going. That’s really scary stuff.
 
So, eugenics, regrettably, is still with us. And I know there is an effort now to kind of rethink and identify eugenic thinking, and to root it out from the sciences, but I think it’s still a real problem, and it’s going to be with us for many years to come, especially if we don’t address it.
 
Nicole: I think one of the problems with eugenics is also that there is a very clear idea associated with what eugenics is and does. Sometimes I feel that contemporary understanding doesn’t actually highlight that there is something there that was, at the time, of interest and, like Nora said, fashionable as well, and at the time this made sense and now it doesn’t.
 
For some reason there is a development in the contemporary understanding that hasn’t really happened, I don’t think. I don’t think that people have realised how certain things go in and out of fashion within sciences as well, and that this is now a time to actually get rid of the idea of hierarchy of disabilities and yet it’s still quite prevalent, unfortunately.
 
Subhadra: So, the more I learn about these ideas, and the more I learn about the how the world is set up and how it works - and this happened to me when I was learning about anti-racism too - the more I realise that I'd been educated into a way of thinking, or indoctrinated really is probably a more accurate way to describe it. In your experience, are people now more aware of ableism and the kind of barriers that disabled students and staff are facing?
 
Nicole: There are certain conditions that are easier to disclose than others. Schizophrenia, for example, is one that’s really difficult. Would you like to be the academic that’s the poster boy or poster girl of schizophrenia? Probably not, because our environment doesn’t allow for that.  Also, because schizophrenia as a condition is massively misunderstood. And again, there are public misconceptions about it, that TV and media and films reinforce stereotypes in ways that are totally incorrect. The same is with narcolepsy, actually. Narcolepsy is a sleep condition where people are getting tired and have got fatigue, but how it’s represented in films and novels is that people drop asleep from one second to another, and whilst that may happen for some, it doesn’t by far happen for everyone.
 
So again, all these misconceptions that are not really helping that situation and that’s why this hierarchy of disabilities is happening. And then obviously, again, like I said earlier, would you like to be the poster boy or poster girl of schizophrenia? That’s what happens. Once you stand out as being non-normative and different, in whatever way, then you do end up with additional labour, additional requirements, additional tasks; you are then the poster person for the EDI Committee, for the interview panel, whatever it is. So again, there is that element.
 
Nora: Things also compound. So, are you disabled? Well, yes. Is your life easier as a disabled man than a disabled woman? Yes. Certainly I work a lot on issues of people with disabilities in low and middle income countries and a lot of the work I do compares not just disabled versus non-disabled, but disabled men versus disabled women, for example.
 
Of if you’re disabled and a woman and a member of an ethnic or minority community, or disabled and you’re a woman and you’re a member of ethnic or minority community in many parts of the world, including here in the UK, and you happen to live in a rural area as opposed to an urban area, your chances of getting an education, or equal access to healthcare, or the right to vote, are significantly less than even a disabled man from the majority ethnic group living in an urban area.
 
So, we need to think about these terms not just in terms of easy labelling, but also the complexity when it comes down to actual human lived experiences.
 
Subhadra: I think that here at UCL, we’re starting to get better at talking about the inherent racism of eugenics and that’s the way we’re going to tackle those problems. But we’ve seen that ableism intersects with racism to keep people in their place, it marginalises people. How can we better incorporate ableism into critical thinking about eugenics?
 
Nicole: I think, at the heart of everything, is to be aware and to listen. I think that’s what is really required. Everything else will fall into place after that, as far as I’m concerned. Like we said earlier, you cannot lump everybody’s experience into one big category, it just doesn’t work that way. There may be some people - again, their lived experiences are different - you may have somebody who is autistic, or has got a diagnosis of ADHD, but that person and that person’s experience is quite different from the next person who is also autistic, or has also got a diagnosis of ADHD. And how they want to be treated, how they want to be talked to, how they want to be approached is very different.
 
I’m looking here specifically at the deaf community. As a person who is hard of hearing myself, I am not comfortable using the word deaf. I keep using hard of hearing, although, technically I am profoundly deaf. I’m struggling to kind of identify as somebody who is deaf. Now, if somebody calls me deaf, I don’t take offence to that but another person might, and that’s why it’s really important to talk to people about that.
 
For some people, being deaf is being Deaf with a capital D; this is part of who they are, it’s part of their identify. So, to not call those people Deaf would be rude. So, it’s really about talking to the individual experiences, being aware that there are different experiences and then trying to listen to what people say. If somebody says, I want you to call me autistic, then do. Even if you don’t like the term, it’s not for you to decide, the person gets to decide, and I think that’s at the heart of everything, as far as I’m concerned.
 
Nora: I’ll just add to that, all you can do is to treat each person as an individual and treat them with that same courtesy and dignity that you'd want to be treated yourself. In terms of finding labels, I’ve been around for a while now, and so there are all these terms and what’s the best term for disability? These things cycle through and they’re rejected and we can overdo it in terms of what the right terms are. We don’t seek a term for every person we meet. We usually take them as individuals and people with disabilities should be no different.
 
Subhadra: Nicole Brown, Nora Groce, thank you so much for joining me today.