{ disability studies }

  • Adding Disability To Your Syllabus


    In the past year, I’ve been finding ways to infuse Disability Studies into the education courses I teach. Since a few friends and colleagues have asked me for advice on how to infuse a week or two of disability-related content into their syllabi, I thought I’d share what I’ve learnt so far for any other educators out there looking to do the same.

    The three biggest things I’ve learnt:

    • Students really have no clue how bad discrimination is toward people with disabilities (e.g. forced sterilization, subminimum wage, immigration restrictions, removal of children, lack of sex ed, higher rates of violence and abuse and sexual violence)
    • It is new and alien for them to think about disability pride
    • They are not used to hearing disability voices at all

    As such I recommend any introduction to disability studies start with addressing these, especially from an intersectional lens. Pretty much of the ways in which ableism is accepted and reinforced in society disproportionately affect multiply-marginalized disabled people (e.g. black disabled people, trans disabled people) and that needs to be reinforced.

    Recommendations for Readings

    I’d start by thinking about how you can take existing topics in your syllabus and relate them to disability justice. For example, let’s say you’ve been teaching about critical race studies. You could then talk about the intersections of race and disability, such as how special education as we know it was created to ensure racial segregation after Brown v Board. Or, let’s say you’re teaching a course about the sociology of science; you could get into issues of eugenics or the relationships between disability and technology.

    Since students tend not to have any background in disability studies, here are a minimal set of readings I’d suggest to start with. Only one is an academic reading; and other than it and a 45min podcast, they are all quite short. All of these should be accessible to an undergraduate audience.

    If you only have one week:

    1. Stella Young: I’m not your inspiration (~10 min video, has captions)
      • Introduces social model of disability, inspiration porn, critique of how education system deals with disability, disability community
      • I generally hate TED talks but this one has proven effective! Heard students returning to it a bunch during small group activities.
    2. Center for Disability Rights’ Disability Writing & Journalism Guidelines (~15 min read)
      • Resource on language to use about disability; good/bad disability organizations
      • Introduces ableism, disability community, intersectionality
      • If you’re assigning the Stella Young video, I’d order things so this comes after so it reinforces her speech. You can make this one optional but I recommend having it posted so it’s a resource available about what language is appropriate.
    3. Harriet Tubman Collective’s open letter: The Vision for Black Lives is Incomplete Without Disability Solidarity (~10 min read)
      • Note: “audism” is discrimination toward the Deaf community
      • Introduction to the issues at the intersection of race and disability
      • Overview of some of the ways that disabled people today continue to be oppressed
      • I have students who are already supporters of BLM. Might think about a different reading introducing race+disability intersections if you’re worried about students being anti-BLM.
    4. Rose Eveleth in Wired: It’s Time to Rethink Who’s Best Suited for Space Travel (~10 min read)
      • Introduces some of the ways in which disability is advantageous

    If you have a second class, or assign more than an hour of reading each class, add:

    1. 99% Invisible podcast episode “Curb Cuts” (~45 mins, has transcript)
      • Introduction to the history of disability rights movement in the US; Ed Roberts and the Rolling Quads
      • Introduction to curb cuts, universal design
    2. Chapter 2, “The Social Construction of Disability”; from Wendell, Susan. The rejected body: Feminist philosophical reflections on disability. Routledge, 2013. (~40 min read)
      • Introduces how disability is socially constructed
      • Discusses intersections of disability and sex/gender
    3. Olga Khazan in The Atlantic: When Hearing Voices is a Good Thing (~5 min read)
      • Describes how schizophrenia symptoms vary culturally - helps reinforce how disability is socially constructed
      • Also presents people who are happy to have schizophrenia and don’t see it as a bad thing - helps reinforce disability pride

    If you’re worried about there being too much in the second week, I would switch either the 99pi episode to week 1 and then move the CDR writing guidelines to week 2. And then from there add readings relevant to things you’ve already talked about in your course!

    Selecting Relevant Readings To Your Course

    If you don’t already have some relevant readings in mind, or don’t feel confident about the ones you’re thinking of, I would do a google scholar search for "ableism" + (relevant topical keywords).

    I would steer away from searching for "disability" + your relevant topical keywords because of how much ableist content there is out there. Talking about ableism is a decent shibboleth to gauge DS background.

    You may also want to have a skim through the table of contents for Lennard & Davis’ Disability Studies Reader (pdf). There’s a ton of classic articles in there and the TOC usefully gives short descriptions of each. You’re also welcome to peruse my annotated Disability Studies syllabus here!

    Class Activity

    In class I have a set of slides in which I discuss current disability rights/justice issues, different models of disability, and disability pride. When I presented these slides in winter 2019, it took me 37 minutes to go through them; I gave a more streamlined version in fall 2018 that took 20 mins.

    I then do a class activity wherein for multiple disabilities I ask students in group questions like “How does society marginalize people with this disability?” and “Why would somebody with this disability feel proud to have it?”. The worksheet is here and takes about an hour (~10 mins a question). If you want to shorten it, I would assign 2-3 disabilities out of the five there, but vary which groups get which disabilities. You can get it down to 20-30 mins this way.

    Before the worksheet I work through two worked examples: deafness and Ehlers-Danlos Syndrome. Students struggle the most with why somebody would be proud, so be prepared for that! After the students have worked through the sheet I have groups share their responses to that question because I know that’s what they tended to struggle with.

    My Experiences With This

    • Each time I’ve taught this (slides+activity), I’ve opened with asking people to list some disabilities and categories of disabilities
      • “Mental” vs “physical” always seems to be the first thing, and I have to do some work showing how that dichotomy breaks down
      • Students typically expect there’s a definition of disability, or expect there to be agreement on what it is. So they ask questions like “is X a disability?” and I have to explain that it depends on who you ask.
        • If you’re pressed for time and don’t want to really dive into social constructionism, you might start with the WHO definition and discuss some of its limitations — but at the same time I think it’s important to make clear there is no agreed upon definition
        • Students often stuck on how chronic illness is disabling, and how the dichotomy between illness and disability is also a broken one
    • The first time I taught a lesson disability studies I didn’t spend any time justifying why disability matters as a lens. Second time I put in a little slide listing some of the legal forms of discrimination against PWD and the students were shocked. Third time I did even more.
    • I’ve learnt to do EDS as a worked example because students don’t know what it is. An earlier version of the worksheet had more disabilities available (I had a bunch of strips of paper and randomized which groups got what) but we were slowed down since many of the disabilities students had never even heard of before.
    • Working through some examples of what the social model entails and having students work through some more appears to be effective for getting their heads around the social model.
      • Students often get stuck on the difference between social model and social construction.
    • I’ve gotten consistently positive feedback for including disability studies in my teaching — students appreciate learning about it!
  • A Reading List for Critical CS Education

    One of the challenges of studying equity in computing is that while there is a lot of work on the subject, the topic lacks the infrastructure of a well-established (sub)field. For example, when I was a PhD student studying for my qualifying exam, there was not a pre-established list of texts for me to study. When students and colleagues ask me for readings on equity in CS I tend to start from scratch each time, and will miss things.

    To solve these issues, I’ve put together a reading list on critical prespectives on equity in computing. The list is heavily annotated for guidance, and importanty covers foundational texts in areas that a criticial approach to computing equity should draw on (e.g. critical pedagogy, Science and Technology Studies, Gender Work & Organization, critical disability studies, critical race studies).

    I welcome feedback on the list. Hopefully you’ll find it useful!

  • Spoon Theory: A Form Of Capital

    As social stratification is something that sociologists study, it’s also something that we sociologists have spent a fair bit of time thinking and theorizing about. One of our modern understandings of class & social stratification comes from French sociologist Pierre Bourdieu. Bourdieu argued that there are multiple forms of capital which together determine class.

    In this essay I argue that spoon theory, a common metaphor for units of physical/emotional energy used in disability circles, are a Bourdieusian form of capital. I’ll explain Bourdieu’s forms of capital, spoon theory, and why “spoons” as a unit of energy are a form a capital. Thinking of spoons in this framework is something that would be useful in social theory, as well as disability studies.

    Forms of Capital

    Bourdieu listed three forms of capital in his work:

    1. Economic capital: how much money you have, assets, etc
    2. Social capital: who you know
    3. Cultural capital: your knowledge, intellectual skills, and ability to navigate particular social situations. A subtype of cultural capital that is often discussed is linguistic capital — the language you have at your disposal.Thinking of multiple forms of capital allows us to have a more nuanced notion of class. For example, a graduate student with very little economic capital often will have a great deal of cultural capital.


    Capital Begets Capital

    Each form of capital can be used to get more of itself (a positive feedback loop):

    1. If you have more economic capital, you can invest the money to get more money. If you have more money, you can buy things in bulk, or buy higher quality items that do not need to be replaced/maintained as often.
    2. If you have more social capital, you can similarly use it to get more social capital. If I know many people, I can ask my many connections to get me in touch with more people.
    3. If you have more cultural capital, you can use it to get more cultural capital. If I have a university degree I am more familiar with how universities function and am better able to navigate the process to get additional degrees or apply to academic jobs.And with all of these forms of capital there is the possibility of a poverty trap. For example: if you don’t know anybody, it’s harder to meet more people. Capital also has inter-generational effects. A parent with more capital can pass their capital onto their children.

    Those who have a given form of capital often take their capital for granted. A rich person does not worry or think very much about spending money. A highly educated person can take it for granted how difficulty it is to get into (and stay in) university, since they likely did not struggle with a lack of cultural capital during their education.

    Capital is Convertible

    These different forms of capital are not separate. For example:

    • If you have more economic capital, you can attend events where you meet people and increase your social capital. You can also attend more “elite” universities wherein you can increase your cultural capital.
    • If you have more social capital, you can find more business partners and talk to people with sound financial advice. Similarly, you can find people to help you get into university, or into a prestigious job.
    • If you have more cultural capital, you will have an easier time getting a bank loan. Also, you can leverage your alma mater’s alumni association to meet people and get social capital.Thinking about capital beyond economic capital is often a useful lens for sociologists when it comes to understanding social stratification. Some of what Bourdieu is known for is his analyses of who in society gets a higher education, which depends on all three of his forms of capital.

    What are Spoons / Spoon Theory?

    In 2003, Christine Miserandino found herself trying to explain to a friend what was like to live with lupus. They were at a diner. Looking for a prop to demonstrate her limited energy, she grabbed spoons from nearby tables:

    _”Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

    I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. […]_Miserandino then proceeded to illustrate to her friend how daily tasks such as getting out of bed, getting dressed, showering, washing her hair, each cost spoons. If she ran out of spoons, she had to stop and rest to recover spoons. For a video description using the Sims, check out Jessica Kellgren-Forzad’s description of spoon theory.

    The metaphor caught on in the disability community as an emic descriptor, particularly online. The term “spoonie“ refers to people who live with limited spoons, such as due to autoimmune disorders, neurological disorders, connective tissue disorders, sleep disorders, chronic pain, chronic illness, and other disabilities where energy is scarce. These types of conditions are often co-morbid with each other, and it gives an unifying label for people who have multiple energy-limiting conditions.

    It’s common for spoonies to describe their activities and lived experiences in terms of spoons. The term spoon has a well established meaning in the disability community as a unit of exertion. I’ll be using the term “spoon” in this way throughout the rest of this article, to reflect that I am using a concept that has been both labelled and accepted by the disability community.

    Let’s Get Autoethnographic

    To get personal: I identify as a spoonie, and the day I learnt about spoon theory was an emotional day for me. It gave me a label to describe my experience, and terminology to explain my life. An incomplete list of my medical history includes myofascial pain, fibromyalgia, IBS, depression, migraines, anaemia, night eating syndrome, and a yet-unspecified hypermobility spectrum disorder.

    Each one of these conditions can severely limit the amount of spoons I have in a given day. I wake up each day not knowing how much energy I’ll have or how much pain I’ll be in today. I have to carefully ration my spoons and spend a great deal of mental energy budgeting my spoons.

    My medical history contains many co-morbid diagnoses of exclusion, and a list that keeps evolving since many of these conditions are only recently being researched by modern medicine. Having the term “spoonie” available to me gives me not only a consistent label, but one that acts as shorthand instead of having to list all my syndromes/conditions.

    It feels very personal for me to share my medical history. Using the term spoonie allows me to communicate my personal situation without having to disclose my medical history. It connects me to a community of other people who have to think about every spoon they spend every day — a currency not worried about by most people.

    Using the Term “Spoons” 

    When I showed friends and colleagues earlier drafts of this article, a common response was that my use of “spoons” felt unusual to them. I spent some time wondering if I should use a more academic-sounding term, such as energy, or exertion. But I see two main reasons why I should keep using the term spoons here:

    1. So the article is accessible to people in the disability community. A common problem with academic articles is we use use different terminology, and so the people who would benefit from reading the article often do not have the linguistic capital to find it.
    2. This is the language that is used in the disability community. It may sound strange if it’s new to you. That’s normal when you see a new term, particularly one outside your habitus. Consider the rest of this article a chance to get familiar with this new term.This isn’t the first academic text out there to use the spoon metaphor: for example there is this clinical study of patients with MS, and this paper about pain communication on Tumblr.

    Spoons are a Resource

    Spoons are a representation of units of physical, emotional, or cognitive energy. Another metaphor often used for this is a battery: energy is spent and can be recharged.

    Spending a spoon refers to an activity which requires significant exertion. Spoons can be recovered through resting.

    What costs spoons does vary from person to person. It costs me a spoon to get out of bed in the morning due to the physical exertion. But if getting out of the bed in the morning is something you can do without thinking about, likely it isn’t costing you a spoon.

    Similarly, while it costs me numerous spoons to get to work, once at work I generally expend few spoons. It doesn’t cost me a spoon to sit and participate in a discussion on advanced statistics, or to read a paper on social theory, or to meet with a colleague. But for somebody with a learning disability all of these things likely would cost them spoons.

    Whether an activity expends spoons is not the same as difficulty. It may be difficult for me to wrap my head around a particularly esoteric scholarly work, but the process does not feel like it drains my energy. Spoons are also not the same as disability. Being deaf or blind does not mean you have a stock of sight or hearing to spend each day. Furthemore, abled people expend spoons; the issue is that they do generally not worry about them.

    If you look at Jessica Kellgren-Forzad’s Sims example, she compares a day in the life of “Alice” who has a chronic illness, to “Mary” who does not. Alice begins her day with 10 spoons and keeps having to stop throughout her day to rest as she is frequently on the brink. Mary, in contrast, begins her day with 30 spoons, and ends it with 20, not having to worry about her energy as she goes through her day.

    Spoons are a Form of Capital

    People who have abundant spoon capital_ _available to them do not worry, or often think, about how  much they have. It is not a limited resource to them. Indeed, it probably wasn’t a limited resource for Bourdieu — and so not something he would have thought of in making his social theories.

    Like other forms of capital, spoon capital begets more spoon capital:

    • Let’s say I start my day with five spoons. It takes me one spoon to get out of bed. One spoon to get dressed. One spoon to brush my hair. One spoon to brush my teeth. I’m now down to one spoon and need to spend my last spoon getting back into bed to rest. Resting gives me back three spoons. It took five spoons for me to get ready for work.
    • The next day I wake up with six spoons. It then takes me four spoons to get ready for work because I don’t have to spend spoons to rest in the process of getting ready. Having more spoons to begin with means the chance to more efficiently expend spoons.I mentioned I spend time budgeting my spoon capital. When I was an undergraduate I spent time budgeting and fretting over literally every cent I had. Budgeting my spoons feels the same way to me._ _Like those who need to track every cent they have in order to keep afloat, I have to pay attention to each one of my precious spoons just to function in our society.

    Spoons are a discrete resource. They can be quantified. They can be tracked. Indeed, I track mine: I keep a spreadsheet diary of my daily spoons and use it to plan and keep track of what I do. (Yes, I am a nerd and I love spreadsheets.) I have a pretty consistent idea of what one activity costs in terms of spoons, and so can reliably measure them.

    Spoon capital is not the same as health. Unlike in an RPG where somebody has health or hit points, it’s quite difficult to come up with a quantifiable, measurable way of saying how much health somebody has. Health is a categorical form of data, not a numerical one. Health is also not spent or recharged in the same way that spoons are.

    Depending on who you are, activities could cost different amounts of spoons for you. This is true of other forms of capital. For example, I don’t have to spend economic capital to read a paywalled scholarly article because I have the cultural capital of institutional access. Likewise, somebody who has the economic capital to get a fancy credit card that gives them free lounge access at an airport does not have to pay the fee to enter the lounge.

    Spoon Capital is Convertible to Other Forms of Capital

    Like how Bourdieu’s three forms of capital are affected by each other, spoon capital is related to the other forms of capital. For example:

    1. When I have more spoon capital at my disposal, I can do more to price shop. I can go to more stores, and compare more prices, or go to a store farther away to get a better deal. It also costs me spoons to buy in bulk. It takes me more spoons to carry a larger/heavier load home from shopping. 
    2. More spoon capital also means more social capital. With more spoons I can do go to more parties and events, or last longer at the same events — meaning I can interact with a larger group of people.
    3. And spoon capital can unlock cultural capital. You need energy to be a student and to finish a university degree. Students with disabilities often spend many of their precious spoons on getting documentation for their disability, navigating university bureaucracy to get accommodations.And these can all go the other way:

    4. With more economic capital, you can buy more mobility aids which will help you preserve your spoons and spend them more efficiently. I bought a recumbent bike ($$) since I can’t ride an upright bike, and riding it costs me fewer spoons than having to deal with public transit. (Driving is an issue for me.)

    5. More social capital means you’re more likely to know people with similar conditions who have helpful management strategies, helpful doctors, good physiotherapists, etc.3. And cultural capital means a that you can stay on top of new clinical research, have more productive discussions with health professionals, and unlock medications/treatments that could give you more (or fewer!) spoons.Spoon capital does not neatly fall into Bourdieu’s framework of three fundamental forms of capital. Spoon capital may be converted into or from other forms of capital but is still a distinct stock of capital. It is embodied, and often quite fixed — I can use my economic, social and cultural capital to find ways to spend my spoons more efficiently, but it is rare to find a way to actually increase the total number of spoons I have at hand.


    Spoon capital is a distinct form of capital that is missing from Bourdieu’s 1985 framework of forms of capital. Like other forms of capital, it can be overlooked and taken for granted by those who have the given form of capital. And like other forms of capital, those without can find themselves in a poverty trap, particularly if they do not have other forms of capital to leverage. Using a disability lens gives sociologists a way to identify aspects of social life which would otherwise be missed by traditional sociology.

    For those who have little spoon capital, thinking about spoons as capital not only unlocks useful language to communicate about our spoon-poverty, but also surrounding the relationships between being a spoon capital and economic, social and cultural capital. This lens can be used to give insight surrounding disability and social stratification.