Unlearning Ableism is a discussion series about disability issues and ableism as a system of privilege and oppression. For these discussions, we come together, share our own experiences around a topic, and engage with perspectives from disability culture. We welcome all people to join us, whether you identify as disabled, nondisabled, or somewhere in between.
Our discussions start from the idea that ableism shapes ideas, interactions, representations, and institutions that touch all of our lives. So it is worth understanding how ableism impacts us as a kind of oppression and as something that gives privilege. This series is also interested in understanding how ableism interacts with with other forms of privilege and oppression that may be related to racial or ethnic identity, gender identity, sexuality, socioeconomic status, age, immigration status, and more.
Ask Us Anything! Call for Questions
We are planning a new session of Unlearning Ableism where we take some time to answer our communities’ questions, big and small.
Have you seen an access practice or assistive tech and wondered what it is for? Are you curious about certain aspects of disability experience or accessibility? Have you caught onto a sense that something is shady or offensive, but you’re not sure why?
You may also want to submit questions you’ve had in the past that you think others may benefit from. Again, encourage you to ask us *anything.*
Fall 2020- Unlearning Ableism: The Recordings
1. Access Labor
Live screening with Chat Q&A: September 29, 4pm
For Fall 2020, we are offering these discussions as pre-recorded videos of the DCC staff having a conversation about a given topic. For each session, the DCC will host a live-screening of the video on Zoom, followed by a live 15-minute discussion in the Zoom chat, where people can ask questions and make comments.
We’re also posting each video here so that folks can watch them on their own time. We’re happy to engage with you if you have any questions or thoughts you want to work through– just email us at email@example.com.
2. Ask Us Anything!
Unlearning Ableism: The Recordings- Access Labor (9/29/2020)
Video description: Title slide shows the Unlearning Ableism flyer, which has bold white text and a pair of blue lips with a blue speech bubble and multi-colored squares. Then there are some explanatory intro slides with a blue background and white text. After that is a conversation with the video showing each speaker while they are talking, including DCC Director Margaret Fink, Program Coordinator Lily Diego-Johnson, Grad Assistant Sylvie Rosenkalt, and Grad Worker Jordan Alcantar.
Transcript for Unlearning Ableism- Access Labor (9/29/2020)
Transcript: Unlearning Ableism: DCC Discussions (The Recordings), Access Labor
Unlearning Ableism: DCC Discussions (The Recordings)
Thank you for joining us for Unlearning Ableism: DCC Discussions, The Recordings. This session is Access Labor, and on the screen is a pair of blue lips with a blue speech bubble and multi-colored squares.
The next slides are blue with white text.
Unlearning Ableism: DCC Discussions is a program at the UIC Disability Cultural Center. We welcome everyone to join us–non-disabled allies and accomplices, people who identify as disabled, and anyone who falls somewhere in between those two categories.
Unlearning Ableism creates the space to talk about disability issues and ableism as a system of privilege and oppression–something that we can all unlearn and resist.
We do that by sharing our experiences, thinking through what we’ve encountered, and engaging with perspectives from disability culture.
A word on the format for Unlearning Ableism, The Recordings. There are two ways you can engage with us. One, you can watch the live screening with us and stay for Q&A in the Zoom chat. Or, you can watch on your own time and submit questions and reflections to a form that will be on our website, dcc.uic.edu/unlearning-ableism.
We’re really glad that you could join us.
We decided we will start with a conversation about access labor. But before we start, let’s just go around and do some introductions.
We’ll do name, pronouns, our position at the Disability Cultural Center, and an access check-in. So, I’ll start! I’m Margaret, I’m the Director of the Disability Cultural Center, my pronouns are she, her, hers, and my access needs are currently being met. Lily, do you want to go next?
>> Yeah! I’m Lily, my pronouns are she, her, hers. I’m the Program Coordinator of the Disability Cultural Center, and I believe my access needs are being met, but if that changes, I will let you all know.
>> Hi, my name is Sylvie Rosenkalt. I use the pronouns she, her, and hers. I am a graduate assistant at the Disability Cultural Center, and my access needs– I just want to give you all a heads up that I’m having a TMJ flare in my jaw, so I might be rubbing my face a lot. It also makes it a little painful to smile, so my facial expressions may not actually match the emotions that I’m feeling. So just wanted to let you all know.
>> Thank you. Jordan?
>> Hey everyone, this is Jordan Alcantar and I use she, her, hers and they, them, theirs pronouns. I’m one of the graduate student workers. And I’m a little sleepy right now–I’m fine–from class and I might move around a lot because I can’t sit still a lot sometimes. But other than that, I feel like my access needs are being met as well.
>> Okay, thank you. All right, so access
labor. I kind of promised everyone that I would start us off with, what are we even talking about? And access labor is something that I’ve heard more informally talked about, and it’s kind of this idea that, you know, if you’re kind of moving through spaces that aren’t necessarily super accessible, you’re taking on a certain amount of work and energy– like effort–to get your access needs met. So that can be emotional labor, it can be logistical labor, it can–that’s usually what it has been, in my experience. And you can also do access labor for other people. So it’s just the work and the effort that goes into making things accessible. So that’s my starting definition, you can definitely add to that! But yeah, I’m really curious about how access labor has played out for everyone– at work, at school, personal life…
>> I can start. (Clears throat.) Excuse me. So, this is Lily speaking. I am–so you all know this, but for those who don’t– I am blind and I have chronic pain and some mental disabilities. And so I always tell, and have been telling, my therapist that like, I can’t just show up to a space because I’m always anticipating my actual way of getting there, and whether it will be accessible, and then when I actually arrive, will the activities be accessible? You know, like will it be a shock to people to find out that I have, like, an apparent condition? So, actually as we were going through this in my therapy session, I was starting to feel really triggered because we actually went through, step-by-step, like all the things that I anticipate, and like the planning that I do. And it got — I didn’t realize how much I actually put in throughout the day just to like navigate my daily life. So that was a point of reflection for me.
>> Totally. Yeah, that’s how it plays out for me a lot, too, that I can’t just show up to something and like it’s gonna work out for me. Like it literally–there’s almost no point in going unless I, you know, email someone to see if something’s set up, and– for me, it’s usually captioning or something– and then, you know, they don’t really know how to set that up. You know, kind of talking them through what that might be like. And it’s just– it’s involved, for sure.
>> I feel like–this is Sylvie– I have a different experience than that, I think. So my disability mainly is like chronic pain. And so it’s sort of this– I don’t know–in between. First of all, it’s not an apparent disability. And there are events, there are times that I can go to an event where the planner has not thought about access whatsoever, and I can participate in that event. And… but, where I find my labor coming in a lot is really around planning. Because it’s mainly about conserving my energy and making sure that the, you know, the number of things I do in a day and the types of things I do are balanced, that I have enough breaks, you know, that I can get time to do the physical things like the stretching, you know, whatnot. Things that I need to do. So for me, it’s not so much like on an event-by-event basis, but it’s more on like a planning a day or planning a week. And I’ve noticed that–that it’s like a skill I’ve really developed, my time management. Especially since–so I’ve had chronic pain since I was 13. So throughout high school and college, really learning how to manage my academic work and my time that I spent on homework really efficiently. I notice when I talk to friends or family members who are also in grad school right now, but are able-bodied and maybe never had to do the intensive kind of planning that I do, that some folks are like really struggling with time management. So that’s kind of a happy, you know like– I know we say that our disabilities they– sometimes there are like difficult things that come about because of them but then there’s also like skills we learn, or other positive things that come about from being disabled. And that, for me, it’s like I am super good with managing my time, managing my flow of activities, and conserving my energy. Yeah so that’s what I’ll say for now.
>> This is Jordan speaking. Yeah, I feel, in a similar sense, — so I don’t experience chronic pain, but I do experience a lot of, like, chronic fatigue, and sometimes even illness, and stuff like that. So I constantly also think about, like, “Okay, how many meetings can I do in a day?” Or I want to go to these events–“Okay, how many of these can I actually go to, depending on how I feel that day?” So and one technique I have done over the years, and I still do even at home that joke a lot about– but it’s very serious for me!– is that I take lots of naps and stuff like that, and I feel like it gets so funny, like especially when we’re on campus, where you’ll walk into one of the Cultural Centers, and you’ll see me, just like completely knocked out on the couch. And everyone’s just, you know, talking and stuff like that. But I have to do that, like people just like, “Oh, I wish I could take a nap like you,” and I’m like, well if I don’t take a nap, I will literally– I can’t pay attention, I can’t really do too much in a class like in class or anything. I’ll just like zone out completely and stuff like that. There’s times where I’d like put my head down in class because I just couldn’t handle it, so it’s like–it’s just funny how people are like “I wish I could do that,” but like I have to, you know, or lay down and stuff like that, a lot. If I’m not in the mood to actually fall asleep, I’ll just lay down a lot. And I’m in a weird balance where people tell me I’m really good at time management, but I also feel like I’m not, just because when I do try to manage my time, I still will sit down and do homework, and just not do anything at all, still. So, I don’t know, I’m still not– it’s still kind of hard to navigate, where I have the understanding of time management very well, but also at the same time, in practice, it doesn’t really work out with with me a lot. And then, it’s also hard to explain to people this, because none of my disabilities are apparent either. So kind of like, okay well, if I do this like, don’t–you know, that’s how I function. Or, I need reminders and stuff like that. But it just makes you think a lot about how I think time management is something that– yeah, as you mentioned, Sylvie, that I was like, “oh wow, yeah, that’s a big part of my life,” but I still– there’s still techniques I have to do that other people may find silly, but I have to do, I guess.
>> This is like totally bringing up some other conversations we’ve had recently to me, about– I’m thinking about how you guys are so good at figuring out your access needs, and just like taking the steps that you definitely need to take. And I’ve definitely been in places in my life where, like, I don’t really do the access labor, almost, like not…. like, I just want to avoid it, like I don’t want to be bothered by it, and that is definitely a certain level of privilege, to be able to take or leave it, and just– –sometimes I will like not go to the event rather than have to undertake all the access labor that would be involved in, you know, getting things set up. Which definitely ended up, you know, quote- unquote “hurting” me. But, I don’t know, it’s a choice. It’s a choice you make, whether it’s worth the extra–it’s not “extra”! I’m trying to avoid that word, super avoid that word. I keep forgetting to say this is Margaret speaking, sorry about that.
>> Yeah, this is Sylvie. Jordan, I think something that I really related to is your discussion about people saying like “I wish I could nap as much as you do,” [laughs] Yeah. Oh man, oh boy, yeah. That– that really–I’ve had that a lot, with my sleep schedule too, which is, for me not so much taking a lot of naps, although I do rest during the day, but it’s like going to bed very early and getting between 10 and 12 hours of sleep every night. And I have heard a lot of people say, “I wish I could always get as much sleep as you do.” Yeah. And what they don’t realize–I’m trying to like tie this back to access labor, and something I was thinking about before when, Margaret and Lily, you were mentioning, like, you can’t go to an event without checking first–for me, a lot of events that are inaccessible is like the entire category. So like, night time events. (chuckles) Yeah, Jordan, I like the face you’re making. (chuckles) And I think, Margaret, like you said there was different times in your life where you would just take it or leave it. Like, there have definitely been times in my life, particularly in college, where I was working way beyond my capacity, both like academic work, work work, for like a job, and also just socially And it has been a trade-off that I’ve made to kind of narrow my life more, and while I feel good about that, like I definitely feel healthier on a day-to-day basis, I’m in a lot less pain, it also you know, it is a choice, and it is something that I wrestle with. Like if I get invited to a housewarming party like that a friend’s having, it’s like, “okay is there gonna be somewhere for me to sit down? Is it going to be like a lot of people talking that I don’t know? Is it going to be like kind of quiet and cozy and not very sensory-stimulating, or is it going to be really overwhelming?” And yeah a big type of event that I’ve had to wrestle with is also like concerts. And I love music, but going to like a loud concert where there’s no seating– which I’ve found out happens more than I would like– I can’t do it, even if it’s like an artist that I love. So yeah, I don’t know how that–I don’t know that that exactly is about access labor, but it’s about access and the types of events that I can or can’t go to, you know, without doing some significant planning in advance.
>> I feel like we’re talking about situations with the labor’s on us, right? Like, we’re the ones that have to kind of do all the thinking about all of this, and all the arranging, and I think that’s like a huge difference is when– you know, we’re starting to see this so much more, especially at UIC, people kind of taking on, as event planners and so on, some of the access labor of like thinking through, “okay, is it going to work for X person that I know how to think about, and you know there’s this thing that I can maybe arrange for, that would, you know, make things more accessible. But, yeah.
00:17:34.880 –> 00:17:40.240
>> Well, also–this is Lily speaking–Yeah. And also, something that I found is that I often–like now I realize that the ways that I’ve had to navigate the world have really influenced the way I interact with others and can kind of offer skills and techniques, whether they’re disabled or not, on how to approach things, kind of like you were saying, Sylvie, about time management, or or even if it is about like–particularly related to accessibility because of a condition, I’m finding that I’ve become so much more creative and like willing to think outside of the box, and just come up with sometimes ideas that seem really wild, but I think that’s part of it, right? Like that’s part of the brilliance of disability for me, and finding communities, that you’re able to explore these options with someone, and other people. And like if they don’t work, that’s okay, like we tried it, but at least, I don’t know, like it’s not always perfect and it won’t always be. It can be really draining but like, I don’t know, just even having spaces to be able to talk about this is really helpful for me right now.
>> Yeah this is Sylvie, and what you just said, Lily, reminded me of when I first met my mentor for a fellowship I was doing a while back. And we met over Zoom–well, this was before Zoom–but we met online because we didn’t live in the same state, and I was in so much pain. And at the time, like taking a bath was one of the only things that would help. And so, actually the first time I met my mentor, I was like in a bathing suit in my bathtub, and he was so affirming. I should say he’s also disabled and had chronic pain, and he was like so affirming of that choice to just make myself comfortable. It really made me think about professionalism and about the access labor around–or I don’t know if it’s access labor–but just the labor around trying to appear quote unquote “professional,” when that’s like not comfortable for you or your body or your mind, and the permission in like disability community spaces to experiment with things that might be seen as wildly unprofessional, like meeting someone in a bathtub, but that actually might be helpful. And when I think of professionalism, really, I think it’s it’s about like what does it mean to do good work, and if we’re trying to do work around disability and disability justice and disability culture, then like good work is rejecting whatever people thought professionalism was, and trying to make an environment that is as comfortable as possible and as accessible as possible for everyone who’s participating.
>> Yeah. This is Margaret. I was thinking earlier that some of my– earlier in my life, –I guess I’m on this really nostalgic thing right now, in my life. I figured out that it was exactly 20 years ago that I started college, so it’s making me feel kind of like, oh wow! But I think a lot of my energy was expended, in some parts of my life, on passing and like minimizing the appearance of my disability. And I don’t know if I even want to claim that as access labor, but it’s related, for sure. But yeah, that’s kind of my only thought.
>> So this is Sylvie again. I think there’s kind of this other side to the access labor we’ve been talking about, like our own personal experiences, but we also all work together in a cultural center where we’re like doing access labor for theoretically like all of UIC, in a certain extent– not that we’re responsible for all of UIC, but anyone who can come to our events. We, I think we want to take on that labor, like we don’t want our students to have to be doing that kind of labor. But, you know, that’s like way easier said than done. And I guess I’m wondering what people’s experiences are related to work, and like trying to provide access labor for our campus community.
>> Yeah, that’s making me think of Jordan actually, because Jordan did so much work on our newsletter, and the newsletter is such an access labor undertaking, OMG! I don’t know, Jordan, if you feel like expanding on that, because you’re so familiar.
>> Yeah, thank you for bringing it up because I was like, it was funny because I talked about that a lot when I used to do the bulk of that and I was like, “oh yeah, that is access labor!” Just to kind of explain what we mean is that, when– you know, I did a lot of the newsletter, and part of the access labor that, you know, I was like, “I have to do this!” It’s like, you know, image descriptions and like other, you know… my brain! (chuckles) Sorry, but –and the thing I got, kind of, I personally just got–I’m gonna say “annoyed” with, was that I would constantly compare the work I was doing to like other units on campus and I was like, “why aren’t other people doing this? This shouldn’t be just like for the Disability Cultural Center.” I mean, just like besides DHD or something like that, like none of the other Centers I saw were really doing it. And then, another incident that happened that I kind of was like, “no, that’s not okay”– once, when I made a flyer for one of the events and I wrote like this really, very, like you know, “oh, access notes!”– that was the other part that I always write– access notes, that are not just like “this is wheelchair accessible.” Like actually explaining what we’re offering, like maybe the limitations, you know stuff like that. And I remember I wrote like a whole access note, I wrote image description, everything. And another center shared it and they purposely cropped it out. And I was so angry, like I even like wanted to speak to everyone about that and I was just like you know that took me so long, so much of my time and energy and my knowledge to do, and I just was like– So, I don’t know, it was like, even that small part really got to me. And it just was like, you know, it’s like how much I really wanted to let other folks know, other departments, other people, that it shouldn’t be just us doing this work, too. Everyone should be, and if you are gonna share things from other folks who have done the labor, you should include that, in it and stuff like that. Because that was just total erasure, in my mind. And stuff like that. So, you know, don’t share things and then– just like, that’s what– yeah, I’m glad you brought that up because I was just like so angered at that. I think a lot more places have kind of listened to that, but it’s just like, again, where people are only expecting our space. But that should be the standard for all the spaces at UIC– and not just UIC, obviously– but especially, specifically within where we’re working, and stuff. Sorry, (chuckles) I was like angry again.
>> Well this is Lily speaking. Jordan, I think you’re getting at another point, where like part of the labor that is also going on is like having a huge culture shift for a whole bunch of people on campus, a bunch of departments, and then like, and then even, the labor that goes into explaining to people why things are important, or why this is accessible– that is a whole nother layer, and often not readily talked about or recognized. That actually, this does take time and energy and a lot of consideration, and there are reasons why we do some things the way we do them. And so… yeah, I feel like I had another comment, but it just escaped my mind. so!
>> Yeah, I– this is Margaret–I appreciate this so much, like about– the way you helped me think about it, Jordan, is that you’re kind of talking about, can you please respect this access labor, you know, that time has been put into it. And I think you’re also getting at the emotional labor that’s kind of related, which is like, the metaphor– there’s a little bit of a joke that I always have these strange metaphors to talk about things, but the metaphor that I’ve been thinking about for my own experience of access in a university culture, like many university cultures, they’re not very accessible at this point, it’s just like this icebreaker ship of like, you know, just grinding against this thing. And it’s kind of this aspirational metaphor, where it feels like I have to be completely unfeeling, and cold, and metal, and hard, and just tough. And it doesn’t feel that way. It feels hurtful that, you know, people aren’t taking on this labor of including me and people like me. Yeah. Yeah.
>> Yeah, well I mean there’s this emotional aspect– oh sorry, this is Sylvie– of just like existing in a place that wasn’t designed for you, and that never– you know, didn’t take a person like you into account, or never expected someone like you to participate. And I think that goes beyond disability. I mean there’s lots of identities that people have where it’s like painful– it’s painful to fight for your own right to exist in a certain space, or just to be at a university that, you know, clearly wasn’t designed for you, or to be in a class… Yeah, there’s just that underlying pain, emotional effort of existing and surviving and trying to thrive in a system that was not built for that.
>> Yeah this is Lily speaking. I think– um, yeah, and I think, because of all of this– like, in my particular experience, having to prove that I deserve to like, just simply exist and also but like, I deserve to be in spaces, that has caused me to internalize a lot of just like really harmful messages about the way I think about myself or the way that I interact. And, sort of, I think it kind of gets that– like, kind of going back to Margaret’s point earlier about passing, right? And like how sometimes for me, like clearly, I cannot pass, but like the need to want to pass as non-disabled, or like the way that manifested for me was like, never asking for help, or like trying to pretend that all is well when I’m clearly lost. (chuckle) Or like you know And just like –I guess it’s making me sort of– I think that this is why I’m so attached to the work that I do now and like trying to meet students and trying to build a sense of, there’s someone out there who gets it.
00:31:48.000 –> 00:31:52.159
>> Yeah. This is Margaret. Making me think of like Access Is Love. Like, I was thinking about how I identify with that completely, Lily, like this desire to make it not seem like a huge deal, kind of like hide all the access labor. Because I think kind of, in dominant culture, it feels “extra.” it feels like, you know, like a bother, like trouble to do this quote unquote “extra” access labor to make something accessible for someone. That’s not how we view it at all. It’s like, it’s not charity, it’s solidarity–which is kind of a refrain that we go to a lot. So yeah, that’s really helpful for me. Thank you.
00:32:49.039 –> 00:32:53.360
>> So, this is Margaret again. I just want to invite any last thoughts because we’re kind of coming up on the time that we said we were going to set aside for this conversation. So I don’t know if we want to go around– feel free to just pass– and just say what you’re kind of sitting with from this conversation.
>> This is Lily speaking. I think this has brought up a lot of thoughts and topics that I wish we had more time to go into, so I think–I don’t know, this has just been helpful for me, just to have a good reflective point in my day, so I just I really appreciate it.
>> Thank you.
>> Yeah, this is Sylvie. I also have like a lot of thoughts percolating right now. I think what I’m ending thinking about is just the balance of holding that like doing access labor for our community is solidarity, is love– and– is work. (chuckles) So like, holding that the reason why you do it and and that being important and also acknowledging, you know, that it’s labor. And wanting to make space for that but also– what’s the word, like I can’t think of it. Well, that’s okay. I’m just thinking about how access labor is labor as well as love.
(Sylvie and Jordan chuckling)
>> This is a good point.
>> It was like how are people getting compensated for this work that they’re doing– or not.
>> This is Jordan. I– yeah, I’m still like, there’s so many things I’m also absorbing right now, and even just bringing up compensation, I always think about that too, where like like, “Hey, I need money. I can’t just like– this is so much work.” And, or I don’t know, I still carry with me, it’s okay to like let others know that they need to also do this labor as well, it’s not just on me, just because I might be the only person in the space who understands like disability or stuff like that, and access. Like, no, it’s also your responsibility to learn this, and know this, as well. And I’m, you know, okay with helping people learn them, but it’s just like I think now as I grow into it more and more, I feel more comfortable kind of expressing like how I feel about these things with my labor, making sure that it’s respected and recognized, but then also holding other people accountable and knowing that there’s also so many people who are like me once and have no idea what like image description is. (chuckles ) But just like I had to learn, you will learn as well. You will learn! (all laughing)
But I feel it as a sense of love and I feel like–I really love that that’s part of the phrase, because it’s like, I love my community, and I love you, so that’s why I really want you to learn. You know, it’s like that’s how I want other people to extend their love to me, because I’m still learning these things. I’m still learning a lot of other techniques for access labor. I’m still learning on how do I even talk about my own like needs and stuff like that. But, yeah, I’m just thinking about a lot.
>> Oh, this is Margaret. You guys are great. Yeah, I think I’m I’m also just you know, the same refrain– it’s good, because we’re hopefully launching into a Q&A discussion, reflection situation– but yeah, I have a lot on my mind from this conversation. It was really just a lot of related ideas that, kind of the relationship became a little clearer for me. And maybe because of my position I am also thinking about, you know, just on this big scale– this question that we’re talking about, we kind of moved from the individual up to like a broader, collective scale, and I mean, the status quo is, many of us, many disabled people, are taking on the work of being present in community with other people and that’s not– just, that’s not right. And I really just, I’m optimistic, I really am, that you know we’re gonna get there. But yeah, I think it should be a collective effort. Collective access is one of the principles of disability justice, just that this is not on the people most affected only.
And, yeah. So, okay, I’m gonna kind of wrap it up now. I want to thank everyone who tuned in for joining us for this conversation, and I want to re-invite people who are here for the live screening to join us in the Zoom chat for reflections– just what’s on your mind after kind of being with us in this conversation? What kinds of questions are coming up for you? Just anything goes. We really invite you to engage with what we’re thinking through. And if you are watching this on your own time, please find our website, which is dcc.uic.edu/unlearning-ableism. There’s a Q&A form on the website where you can submit reflections and questions and stay tuned for our responses.
Yeah, okay! So this is us signing off.