Today, while sitting in a shaded outdoor common space on my college campus, comparing sets of blood test results from the last year to see if there was anything I wanted to bring up with my doctor, I overheard a snippet of conversation between two middle aged women. What stood out to me was the woman who said, clearly in praise, “I know she’s suffered extremely, but she comes to work and she does her job!”
This is a kind of violence.
Now, maybe you’re reading this thinking What?? Sounds like the lady is a badass, good for her! Or maybe you’re thinking Why are you complaining? I would be appreciative that my coworker was doing her job despite hardship! Everybody has problems, I have problems, but I don’t bring them to work with me!
So before I break this down, let me tell you a little bit about two of my coworkers with disabilities: for context, there are other people at my place of employment with disabilities but I am most familiar with “A” and “B”’s specific circumstances, so they’re who I’m going to talk about here. Both coworkers I am discussing here are white, straight, cis women. I am not going to give any specifics that might make them identifiable, but I will say that “A” is in a skinny young adult with an autoimmune disorder; and “B” is middle aged, plus-sized, and has multiple disabilities. “B” is required to be provided with a chair so that she can sit periodically and has restrictions on how much weight she can lift; “A” has not requested or received any accommodations, although she does miss work periodically when she has bad flair ups. My manager has told me multiple times that she hates seeing “B” sit down because she thinks it “looks bad,” and both she and other managers have frequently harassed “B,” telling her that they need to see her doing more, threatening to stop allowing her use the chair (despite the fact they are required by company policy, and I believe law, to provide this accommodation), and writing her up for sitting down, claiming she is using her chair “too much.” All this is despite the fact that she was moved, against her wishes and to her disadvantage, by said managers from a position that allowed her to accomplish tasks while sitting (and to use a mobility aid while performing tasks while standing), to a position which makes it so that sitting in accordance with her doctor’s directions makes it more difficult for her to accomplish her assigned tasks; she also has less ability to use a mobility aid. “B” frequently expresses concern that she will be fired, and frequently goes longer than she is supposed to without sitting or lifts significantly more than she is supposed to (impacting her health), because she is afraid of being written up, or having a customer complain she was not helpful enough. My other coworker, “A” frequently works while visibly suffering from flair-ups and explains at length to myself and other managers that she is trying to get her health stabilized so that she does not inconvenience anybody, and because she wants to be a good employee. My manager praises “A,” except when “A” does have to miss a period of work because of her condition, and then, despite the fact that “A” always brings in documentation showing she was not only having a flair up, but was receiving treatment, my manager writes “A” up because her absences are “too much at this point,” and “beyond what we can reasonably excuse.” This is only the smallest possible example of the harm done by praising someone for “coming to work and doing her job.”
This mentality focuses on a valuing of human life based off of how productive and convenient a person is, and it’s something I see prevalent in classroom and employment settings (both as the affirmation, as well as the inverse “I know X is going through a lot, but they’re attitude is terrible, they’re just not doing a good job!”). Essentially, the value assigned to a person as an employee (or as a student) is based on how much they are able to do despite disability (or other barriers), and is framed through a lens of personal convenience (ie “I’m not ableist, I just don’t want to get stuck doing all the work because they can’t”). At its core, I believe the idea that this mentality stems from ableism, neoliberalism, and capitalism.
Disabled people, especially disabled women, are under constant surveillance; there’s a great article by Sharon Dale Stone called “The Myth of Bodily Perfection,” where she discusses the idea of bodily perfection and points out that morality is generally tied to ability, and that people (especially women) are likely to conceal disability if they can. This is because of capitalist ideas of productivity, as well as neoliberalism; anyone who is not appropriately productive, who can’t come to work and do their job, must just be lazy, must not be trying hard enough. “Model” disabled figures, such as the woman I overheard be discussed on campus, are used to prove this; if she can do her job, why can’t someone else? What is overlooked is not only that people have different needs and abilities and not everyone can come in every single day and meet/exceed expectations (or that the additional burden of trying to do this may not be desirable, and shouldn’t be enforced), but it overlooks the actual lived experiences of this “ideal” figure: what is it costing her to fill this role? Why is she put in a position where she has to? Furthermore, why are you blaming those who cannot do it? While it may be inconvenient for you to “pick up the slack,” rather than blaming your disabled coworker, maybe ask why your employer is setting you both up to fail–why is your coworker being asked to work beyond their ability, and why are you? Why is the workplace not setup to accommodate for disability?
This also ties into another of Stone’s points: that we imagine individuals are “totally able or totally disabled, with no in-between,” and that disability cannot be concealed (418); essentially, in the hegemonic imagination if someone is disabled they should not only experience the same amount of disability at all times, but should be completely (and visibly) disabled. The employed disabled figure is something of a paradox: while neoliberal Model Minority figures exist, those with visible disabilities must either be able to achieve this status, or be viewed as unemployable; this comes out in sentiments along the lines of “Well, if they were able to do x,y,z task last week, they can do it today!” and “All I’m saying is if they can’t do the job, they shouldn’t work here!” With invisible disabilities, it largely comes out as a complete refusal to believe the person in question is disabled; this doesn’t always mean a specific belief that the person is lying, but rather a refusal to engage with, on a meaningful level, the idea that a person who “looks” healthy and normal has real limitations that impact their ability to do things, and is not just “being lazy” when they can’t do something.
So what’s the solution to this? Ultimately, what I want is good allyship. Think critically before you speak. Ask yourself why is it so important to you that your coworkers, who are “suffering extremely” are also meeting your standards of productivity. Look for ways to make your workplace or classroom more accessible. And above all else, try to find ways to build solidarity; instead of praising the woman who is working despite suffering, ask what you and others can do to alleviate the suffering.
do you ever feel unbearably frustrated or constrained by conventions of writing? i.e. linear presentation of ideas or narrative, argument that “progresses” by building on previous points, intro-thesis-support-conclusion structure, the beginning-to-end nature of reading and writing, etc…
if you could write in a way that better suits your ways of thinking, speaking, or sense-making, what might that look like? or, what are some practices that have helped liberate you from the mold? how would you change up structure, style, or medium? would you incorporate other sensory modes like visuals, audio, or physical materials?
I have an associate way of thinking, and I often visualize my ideas in mindmaps with networked, interconnected, ecological points. I’m thinking of inserting such a mindmap in a paper. writing in websites with multiple sections/pages have helped in some ways too, though often, there’s still linearity in how we navigate menu bars. I want to explore other stategies and tools that could empower us.
I’m interested in flipping the script - questioning and reimagining it.
the language we use to describe ourselves, to build communities, and to frame the world within and around us matters. with this in mind, i’ve been asking myself tough questions that i’d like to extend to others who feel marginalized in ableist systems:
what term(s) do you identify with to describe yourself in relation to ableist structures?
what meanings or functions does this language have for you? are there challenges or limitations that come with using this language?
despite the stigma and misconceptions that the word disability carries thru ableist lenses, many folks (including myself) identify with it as a tool for repurposed meaning and community. i’ve seen folks identify and communicate with differently abled, neuroatypical, neurodivergent, etc. as alternate/related terms that challenge some of the negative connotations of disability, though they also have potential to be framed in ways that makes us other. nonetheless, i think each of these words empowers, (re)frames, resists, and connects us in unique ways, often dependent on our goals and experiences.
i’m not searching for infallable language or a catch-all descriptor for diverse experiences. however, i am hoping to understand how others are navigating and negotiating language within their own contexts. i amtrying to be mindful and critical of language that shapes how i see myself, how i relate to others, how i resist and interrogate ableism. i am searching for language that can bridge me with folks who may not identify with markers as politicized as disability, persay, but may resonate with not fitting into ableist norms.
would appreciate reblogs or DMs to circulate conversation and share perspectives/stories. <3
Hi there - I’m Kaydra! I’m trying to create a communal space for dialogue, support, resources, research, coping, and personal reflections regarding mental health and (dis)abilities, esp in academic contexts. I’ll often post on Idiopathic Hypersomnia, ADD, chronic depression, and my rage against the ableist institution that is academia (along with strategies for being a student and teaching students).
Much of my research deals with the ways in which bodies are disciplined and how they go about resisting that discipline. In this piece, adapted from one of the answers to my PhD preliminary exams written and defended two months ago, I “name the disciplinary strategies that are used to control bodies and discuss the ways that bodies resist those strategies.” Additionally, I address how strategies of embodied control and resistance have changed over time, and how identifying and existing as a cyborg and/or an artificial intelligence can be understood as a strategy of control, resistance, or both.
In Jan Golinski’s Making Natural Knowledge, he spends some time discussing the different understandings of the word “discipline” and the role their transformations have played in the definition and transmission of knowledge as both artifacts and culture. In particular, he uses the space in section three of chapter two to discuss the role Foucault has played in historical understandings of knowledge, categorization, and disciplinarity. Using Foucault’s work in Discipline and Punish, we can draw an explicit connection between the various meanings “discipline” and ways that bodies are individually, culturally, and socially conditioned to fit particular modes of behavior, and the specific ways marginalized peoples are disciplined, relating to their various embodiments.
This will demonstrate how modes of observation and surveillance lead to certain types of embodiments being deemed “illegal” or otherwise unacceptable and thus further believed to be in need of methodologies of entrainment, correction, or reform in the form of psychological and physical torture, carceral punishment, and other means of institutionalization.
Caitlin Wood’s 2014 edited volume Criptiques consists of 25 articles, essays, poems, songs, or stories, primarily in the first person, all of which are written from disabled people’s perspectives. Both the titles and the content are meant to be provocative and challenging to the reader, and especially if that reader is not, themselves, disabled. As editor Caitlin Wood puts it in the introduction, Criptiques is “a daring space,” designed to allow disabled people to create and inhabit their own feelings and expressions of their lived experiences. As such, there’s no single methodology or style, here, and many of the perspectives contrast or even conflict with each other in their intentions and recommendations.
The 1965 translation of Frantz Fanon’s A Dying Colonialism, on the other hand, is a single coherent text exploring the clinical psychological and sociological implications of the Algerian Revolution. Fanon uses soldiers’ first person accounts, as well as his own psychological and medical training, to explore the impact of the war and its tactics on the individual psychologies, the familial relationships, and the social dynamics of the Algerian people, arguing that the damage and horrors of war and colonialism have placed the Algerians and the French in a new relational mode.
Not the “oh Einstein was probably autistic” or the sanitized Helen Keller story. but this history disabled people have made and has been made for us.
Teach them about Carrie Buck, who was sterilized against her will, sued in 1927, and lost because “Three generations of imbeciles [were] enough.”
Teach them about Judith Heumann and her associates, who in 1977, held the longest sit in a government building for the enactment of 504 protection passed three years earlier.
Teach them about all the Baby Does, newborns in 1980s who were born disabled and who doctors left to die without treatment, who’s deaths lead to the passing of The Baby Doe amendment to the child abuse law in 1984.
Teach them about the deaf students at Gallaudet University, a liberal arts school for the deaf, who in 1988, protested the appointment of yet anotherhearing president and successfully elected I. King Jordan as their first deaf president.
Teach them about Jim Sinclair, who at the 1993 international Autism Conference stood and said “don’t mourn for us. We are alive. We are real. And we’re here waiting for you.”
Teach about the disability activists who laid down in front of buses for accessible transit in 1978, crawled up the steps of congress in 1990 for the ADA, and fight against police brutality, poverty, restricted access to medical care, and abuse today.
Much of my research deals with the ways in which bodies are disciplined and how they go about resisting that discipline. In this piece, adapted from one of the answers to my PhD preliminary exams written and defended two months ago, I “name the disciplinary strategies that are used to control bodies and discuss the ways that bodies resist those strategies.” Additionally, I address how strategies of embodied control and resistance have changed over time, and how identifying and existing as a cyborg and/or an artificial intelligence can be understood as a strategy of control, resistance, or both.
In Jan Golinski’s Making Natural Knowledge, he spends some time discussing the different understandings of the word “discipline” and the role their transformations have played in the definition and transmission of knowledge as both artifacts and culture. In particular, he uses the space in section three of chapter two to discuss the role Foucault has played in historical understandings of knowledge, categorization, and disciplinarity. Using Foucault’s work in Discipline and Punish, we can draw an explicit connection between the various meanings “discipline” and ways that bodies are individually, culturally, and socially conditioned to fit particular modes of behavior, and the specific ways marginalized peoples are disciplined, relating to their various embodiments.
This will demonstrate how modes of observation and surveillance lead to certain types of embodiments being deemed “illegal” or otherwise unacceptable and thus further believed to be in need of methodologies of entrainment, correction, or reform in the form of psychological and physical torture, carceral punishment, and other means of institutionalization.
Caitlin Wood’s 2014 edited volume Criptiques consists of 25 articles, essays, poems, songs, or stories, primarily in the first person, all of which are written from disabled people’s perspectives. Both the titles and the content are meant to be provocative and challenging to the reader, and especially if that reader is not, themselves, disabled. As editor Caitlin Wood puts it in the introduction, Criptiques is “a daring space,” designed to allow disabled people to create and inhabit their own feelings and expressions of their lived experiences. As such, there’s no single methodology or style, here, and many of the perspectives contrast or even conflict with each other in their intentions and recommendations.
The 1965 translation of Frantz Fanon’s A Dying Colonialism, on the other hand, is a single coherent text exploring the clinical psychological and sociological implications of the Algerian Revolution. Fanon uses soldiers’ first person accounts, as well as his own psychological and medical training, to explore the impact of the war and its tactics on the individual psychologies, the familial relationships, and the social dynamics of the Algerian people, arguing that the damage and horrors of war and colonialism have placed the Algerians and the French in a new relational mode.
(Cite as: Williams, Damien P. “SFF and STS: Teaching Science, Technology, and Society via Pop Culture,” talk given at the 2019 Conference for the Society for the Social Studies of Science, September 2019)
Thank you, everybody, for being here. I’m going to stand a bit far back from this mic and project, I’m also probably going to pace a little bit. So if you can’t hear me, just let me know. This mic has ridiculouslygood pickup, so I don’t think that’ll be a problem.
So the conversation that we’re going to be having today is titled as “SFF and STS: Teaching Science, Technology, and Society via Pop Culture.”
I’m using the term “SFF” to stand for “science fiction and fantasy,” but we’re going to be looking at pop culture more broadly, because ultimately, though science fiction and fantasy have some of the most obvious entrees into discussions of STS and how making doing culture, society can influence technology and the history of fictional worlds can help students understand the worlds that they’re currently living in, pop Culture more generally, is going to tie into the things that students are going to care about in a way that I think is going to be kind of pertinent to what we’re going to be talking about today.
So why we are doing this: Why are we teaching it with science fiction and fantasy? Why does this matter? I’ve been teaching off and on for 13 years, I’ve been teaching philosophy, I’ve been teaching religious studies, I’ve been teaching Science, Technology and Society. And I’ve been coming to understand as I’ve gone through my teaching process that not only do I like pop culture, my students do? Because they’re people and they’re embedded in culture. So that’s kind of shocking, I guess.
But what I’ve found is that one of the things that makes students care the absolute most about the things that you’re teaching them, especially when something can be as dry as logic, or can be as perhaps nebulous or unclear at first, I say engineering cultures, is that if you give them something to latch on to something that they are already from with, they will be more interested in it. If you can show to them at the outset, “hey, you’ve already been doing this, you’ve already been thinking about this, you’ve already encountered this, they will feel less reticent to engage with it.”
Below are the slides, audio, and transcripts for my talk ’“Any Sufficiently Advanced Neglect is Indistinguishable from Malice”: Assumptions and Bias in Algorithmic Systems,’ given at the 21st Conference of the Society for Philosophy and Technology, back in May 2019. (Cite as: Williams, Damien P. ’“Any Sufficiently Advanced Neglect is Indistinguishable from Malice”: Assumptions and Bias in Algorithmic Systems;’ talk given at the 21st Conference of the Society for Philosophy and Technology; May 2019)
Now, I’ve got a chapter coming out about this, soon, which I can provide as a preprint draft if you ask, and can be cited as “Constructing Situated and Social Knowledge: Ethical, Sociological, and Phenomenological Factors in Technological Design,” appearing in Philosophy And Engineering: Reimagining Technology And Social Progress. Guru Madhavan, Zachary Pirtle, and David Tomblin, eds. Forthcoming from Springer, 2019. But I wanted to get the words I said in this talk up onto some platforms where people can read them, as soon as possible, for a couple of reasons.
[Free vector image of a white, female-presenting person, from head to torso, with biometric facial recognition patterns on her face; incidentally, go try finding images—even illustrations—of a non-white person in a facial recognition context.]
All these things taken together are what made me finally go ahead and get the transcript of that talk done, and posted, because these are events and policy decisions about which I a) have been speaking and writing for years, and b) have specific inputs and recommendations about, and which are, c) frankly wrongheaded, and outright hateful.
And I want to spend time on it because I think what doesn’t get through in many of our discussions is that it’s not just about how Artificial Intelligence, Machine Learning, or Algorithmic instances get trained, but the processes for how and the cultural environments in which HUMANS are increasingly taught/shown/environmentally encouraged/socialized to think is the “right way” to build and train said systems.
That includes classes and instruction, it includes the institutional culture of the companies, it includes the policy landscape in which decisions about funding and get made, because that drives how people have to talk and write and think about the work they’re doing, and that constrains what they will even attempt to do or even understand.
All of this is cumulative, accreting into institutional epistemologies of algorithm creation. It is a structural and institutionalproblem.
The history of biotechnological intervention on the human body has always been tied to conceptual frameworks of disability and mental health, but certain biases and assumptions have forcibly altered and erased the public awareness of that understanding. As humans move into a future of climate catastrophe, space travel, and constantly shifting understanding s of our place in the world, we will be increasingly confronted with concerns over who will be used as research subjects, concerns over whose stakeholder positions will be acknowledged and preferenced, and concerns over the kinds of changes that human bodies will necessarily undergo as they adapt to their changing environments, be they terrestrial or interstellar. Who will be tested, and how, so that we can better understand what kinds of bodyminds will be “suitable” for our future modes of existence?[1] How will we test the effects of conditions like pregnancy and hormone replacement therapy (HRT) in space, and what will happen to our bodies and minds after extended exposure to low light, zero gravity, high-radiation environments, or the increasing warmth and wetness of our home planet?
During the June 2018 “Decolonizing Mars” event at the Library of Congress in Washington, DC, several attendees discussed the fact that the bodyminds of disabled folx might be better suited to space life, already being oriented to pushing off of surfaces and orienting themselves to the world in different ways, and that the integration of body and technology wouldn’t be anything new for many people with disabilities. In that context, I submit that cyborgs and space travel are, always have been, and will continue to be about disability and marginalization, but that Western society’s relationship to disabled people has created a situation in which many people do everything they can to conceal that fact from the popular historical narratives about what it means for humans to live and explore. In order to survive and thrive, into the future, humanity will have to carefully and intentionally take this history up, again, and consider the present-day lived experience of those beings—human and otherwise—whose lives are and have been most impacted by the socioethical contexts in which we talk about technology and space.
This paper explores some history and theories about cyborgs—humans with biotechnological interventions which allow them to regulate their own internal bodily process—and how those compare to the realities of how we treat and consider currently-living people who are physically enmeshed with technology. I’ll explore several ways in which the above-listed considerations have been alternately overlooked and taken up by various theorists, and some of the many different strategies and formulations for integrating these theories into what will likely become everyday concerns in the future. In fact, by exploring responses from disabilities studies scholars and artists who have interrogated and problematized the popular vision of cyborgs, the future, and life in space, I will demonstrate that our clearest path toward the future of living with biotechnologies is a reengagement with the everyday lives of disabled and other marginalized persons, today.
So, as you know, back in the summer of 2017 I participated in SRI International’s Technology and Consciousness Workshop Series. This series was an eight week program of workshops the current state of the field around, the potential future paths toward, and the moral and social implications of the notion of conscious machines. To do this, we brought together a rotating cast of dozens of researchers in AI, machine learning, psychedelics research, ethics, epistemology, philosophy of mind, cognitive computing, neuroscience, comparative religious studies, robotics, psychology, and much more.
[Image of my name card from the Technology & Consciousness workshop series.]
We traveled from Arlington, VA, to Menlo Park, CA, to Cambridge, UK, and back, and while my primary role was that of conference co-ordinator and note-taker (that place in the intro where it says I “maintained scrupulous notes?” Think 405 pages/160,656 words of notes, taken over eight 5-day weeks of meetings), I also had three separate opportunities to present: Once on interdisciplinary perspectives on minds and mindedness; then on Daoism and Machine Consciousness; and finally on a unifying view of my thoughts across all of the sessions. In relation to this report, I would draw your attention to the following passage:
An objection to this privileging of sentience is that it is anthropomorphic “meat chauvinism”: we are projecting considerations onto technology that derive from our biology. Perhaps conscious technology could have morally salient aspects distinct from sentience: the basic elements of its consciousness could be different than ours.
All of these meetings were held under the auspices of the Chatham House Rule, which meant that there were many things I couldn’t tell you about them, such as the names of the other attendees, or what exactly they said in the context of the meetings. What I was able tell you, however, was what I talked about, and I did, several times. But as of this week, I can give you even more than that.
This past Thursday, SRI released an official public report on all of the proceedings and findings from the 2017 SRI Technology and Consciousness Workshop Series, and they have told all of the participants that they can share said report as widely as they wish. Crucially, that means that I can share it with you. You can either click this link, here, or read it directly, after the cut.
SoThe U.S. Transhumanist Party recently released some demographic info on their first 1,000 members, and while they seem to be missing some some rather crucial demographic markers, here, such as age and ethnicity, the gender breakdown is about what you’d expect.
I mention this because back at the end of June I attended the Decolonizing Mars Unconference, at the Library of Congress in D.C. It was the first time I had been in those buildings since I was a small child, and it was for such an amazing reason.
We discussed many topics, all in the interest of considering what it would really mean to travel through space to another planet, and to put humans and human interests there, longterm. Fundamentally, our concern was, is it even possible to do all of this without reproducing the worst elements of the colonialist projects we’ve seen on Earth, thus far, and if so, how do we do that?
Crip time is time travel. Disability and illness have the power to extract us from linear, progressive time with its normative life stages and cast us into a wormhole of backward and forward acceleration, jerky stops and starts, tedious intervals and abrupt endings. Some of us contend with the impairments of old age while still young; some of us are treated like children no matter how old we get. The medical language of illness tries to reimpose the linear, speaking in terms of the chronic, the progressive, and the terminal, of relapses and stages. But we who occupy the bodies of crip time know that we are never linear, and we rage silently—or not so silently—at the calm straightforwardness of those who live in the sheltered space of normative time.
[…] [D]isability scholars like Alison, Margaret, and I tend to celebrate this idea of crip time, to relish its non-linear flexibility, to explore its power and its possibility. What would it mean for us also to do what queer scholar Heather Love calls “feeling backward”? For us to hold on to that celebration, that new way of being, and yet also allow ourselves to feel the pain of crip time, its melancholy, its brokenness?
Forcrip time is broken time. It requires us to break in our bodies and minds to new rhythms, new patterns of thinking and feeling and moving through the world. It forces us to take breaks, even when we don’t want to, even when we want to keep going, to move ahead. It insists that we listen to our bodyminds so closely, so attentively, in a culture that tells us to divide the two and push the body away from us while also pushing it beyond its limits. Crip time means listening to the broken languages of our bodies, translating them, honoring their words.
[Free vector image of a white, female-presenting person, from head to torso, with biometric facial recognition patterns on her face; incidentally, go try finding images—even illustrations—of a non-white person in a facial recognition context.]
[Image of my name card from the Technology & Consciousness workshop series.]
