Ep. 17: Disabled in Grad School: Ableism, Accessibility, & Burning It All Down (PART 1)
In this episode of Dear Grad Student, Elana chats with Cait Kirby and Kayden Stockwell, of @DisInGradSchool, about being disabled in grad school. This is PART 1 of 2. You can find Part 2 HERE.
In this episode they discuss: what 'disabled' means, defining and diagnosing, how the Twitter account was born, National Disability Employment Awareness Month (NDEAM), and academic rigor, accessibility, & accommodations in grad school during COVID.
Mentioned in this episode:
A wrap up of the polls they ran during NDEAM
A Twitter thread about the blog post by Cait and Adam Hubrig
The blog post: COVID-19 and Remote Work: Access for Whom?
@DisInGradSchool has a list of Disability Advocates on Twitter -- this list is always growing!
Additional academia-related Disability accounts on Twitter to follow: @DisInHigherEd, @DisabledStem, @DisabledAcadem, @chron_ac, @ChronInvisSTEM, @ND_in_STEM, @AcademicAbleism, @DisMHMatters, @StemDisabled
Cait's website --> CaitKirby.com
Kayden's website --> kaydenstockwell.com
More 'Dear Grad Student' episodes in the area of Racism and/or Diverse Identities
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Find Elana on Twitter: @elana_gloger
Music provided by:
Open Those Bright Eyes by Kevin MacLeod
Link: https://incompetech.filmmusic.io/song/4171-open-those-bright-eyes
License: http://creativecommons.org/licenses/by/4.0/
Support the show (https://patreon.com/deargradstudent)
EPISODE TRANSCRIPT:
Elana Gloger: 0:08
Dear Grad Student...Welcome to part one of this giant episode all about being disabled in grad school. Part two will be released this Thursday, December 10 at 12pm Eastern Standard Time. If you think this episode has hot-takes, just wait till Thursday. Anyways, today's episode is all about burning down the system...Uh, I mean, being disabled in grad school and ableism with the wonderful grad students who run the @DisInGradSchool Twitter account, sixth year biological sciences PhD candidate Cait Kirby and second year developmental psychology PhD student, Kayden Stockwell. Hello, listeners! Welcome back to 'Dear Grad Student', the podcast where grad students can come together to celebrate, commiserate, and support one another through this long and difficult journey. I'm Elana, I'm a fourth year doctoral student and your host, and I'm joined today by sixth year PhD candidate studying mitochondrial DNA and C. elegans, Cait Kirby and second year PhD student studying autistic social interactions and perceptions of autistic people, Kayden Stockwell. Welcome to the podcast!
Kayden Stockwell: 1:22
Hello, it's nice to be here. Thanks for having us.
Cait Kirby: 1:24
Yeah. Thank you very much. I'm excited for this episode.
Elana Gloger: 1:28
Me too. Thank you guys, for joining me, thank you for reaching out about this. We'll get to that in a second. But as always, I like to start my episodes shouting you guys out on social media. So if you, I don't know who wants to go first, but if you want to give your personal accounts if you want and the group account that you guys run, go ahead and shout those out, where can they find you online?
Cait Kirby: 1:49
So, we run a group account together on Twitter that's called 'Disabled in Grad School'. And the handle for that is @DisInGradSchool and you can find both of our handles in the bio on that account, but then my personal account is @CaitSKirby on Twitter. And I also have a website where I post resources for teaching and learning that are available for free to anyone.
Elana Gloger: 2:23
Amazing. Do you want to go ahead and spell your personal handle as well?
Cait Kirby: 2:26
Oh, yes. So, my personal handle is @C-A-I-T-S-K-I-R-B-Y.
Elana Gloger: 2:34
Perfect and Kayden, where can people find you on Twitter?
Kayden Stockwell: 2:37
Oh, you can find me on my personal account @KaydenStockwell, K-A-Y-D-E-N-S-T-O-C-K-W-E-L-L.
Elana Gloger: 2:48
Perfect. So, everybody listening, go ahead and give them a follow as I know you all will. But don't worry, if you're not yet convinced about 50 minutes from now, we're gonna do it again. So if you if you didn't catch that, don't rewind, just wait 50 minutes, it'll come again at the end. But today's topic is all about being disabled in grad school and experiencing ableism really every step of the way. Now, y'all approached me about doing this episode, and I know the answer to the question I'm about to ask. But I would love if we started with 'why this episode, or this kind of episode is important? Or relevant? You know, why did you guys want to come and chat with me about this today?
Kayden Stockwell: 3:25
So, on Twitter, there is a good sized and ever growing sort of disability community. And within that there is a sort of sub-community of disabled grad students. But at least for me, like outside of the internet, I didn't know other disabled grad students in my cohort or in my program. And so I was really sort of looking to find that community in any place we could for disabled grad students, but then also sort of bring awareness to the fact that disabled people are present in grad school and in the academy at large for people who don't have disabilities to sort of give some insight into our experiences and the barriers that we face.
Cait Kirby: 4:10
Yeah, I think one big reason why we wanted to start that account, but then also why we reached out after we had started the account was that there's some research that maybe about 20% of undergrad students are disabled, but then only around 8% of grad students, and then only around 4% of faculty. And so, there's this big drop off that there's a much higher percentage of undergrads than grad students and then faculty, and so we recognize that a lot of the barriers, that Kayden was just alluding, to are sort of preventing that transition from undergrad to grad school. And then I've read varying rates of dropout from graduate school for all students, I've read that it's sometimes approaches like the 40 to 50% range...
Elana Gloger: 5:17
Whoa...
Cait Kirby: 5:18
...yeah, that there's a huge rate of attrition. And that that is likely higher for disabled grad students. And so that's probably why we don't have as higher rate of disabled faculty, is that there are all these barriers to getting to grad school, to persisting through grad school, and then making it into the faculty. And so we really wanted to be able to come here and kind of talk about, again, as Kayden mentioned, these barriers to maybe help abled peers understand the role that they can play in sort of normalizing disability, and helping their disabled peers persist through to help diversify the faculty.
Elana Gloger: 6:04
Yeah, wow. So that was like an amazing description that I feel like you've hit every point of what we're going to go over today, I'm like, you did a better job than I would ever do describing any of my episodes. I'm so glad to have both of you here to chat about this. I think that it's, it's really clear that you're both expert on it. Both in your experience, but also just in your sort of like advocacy work. Like, it seems like based on the way that you describe that, it's very clear to me in that 30 seconds, or however long that was, why this is necessary. And I already knew it. Otherwise, I wouldn't have you here because I would have been like, "I don't get it," I get it. But also that was a really sort of like shocking description, in terms of the stats that you mentioned. I admittedly, like didn't even run through my mind, like what percentage of grad students are disabled? And the fact that there is that drop off, just seems like a major problem. You know, as I've talked in previous episodes, like when we talk about representation, right? So like with that drop off, not only is that a bad thing at the level, that it's a bad thing, but it also means that if you have 4% of faculty or who are disabled, right, that contributes, like in the cycle of, well, yeah, undergrads aren't seeing themselves in faculty...
Cait Kirby: 7:11
Exactly.
Elana Gloger: 7:11
...which, as I know, we're going to get to, also contributes to the fact that the like, insane amount... *record scratch* You're probably wondering how I got here. Well, after recording the episode, Cait and Kayden provided really important feedback for me about certain language that I use while we were recording. And turns out the word "insane" is not a neutral phrase! Because of its historical use as a derogatory term for people with mental health diagnoses, or to invalidate women's emotional reactions, or just for generally increasing the stigma around mental health, it's been labeled by many as an ableist term, meaning that we really shouldn't use it anymore. And frankly, there are about 1000 other ways to describe situations than the word "insane". And I'd also probably add the word "crazy" to that list. So I definitely messed up here. I'll probably catch myself doing this in future episodes, and I'll keep trying to work on it. But just to let you know, all right, back to the episode, I was just talking about the large, huge, immense amount of ableism... ...of ableism, in terms of like accommodations, and things like, that is such a hard roadblock. Because people aren't listening. Because they don't they don't see it themselves, right, faculty aren't seeing other faculty that are not getting it. And on top of that, like some disabilities are not as visible...
Cait Kirby: 8:24
Yeah.
Elana Gloger: 8:25
...and so there's an issue there as well about it, you know, almost like disability erasure, right? Where it's like, "Oh, well, if I can't see it, it's not happening to you." And I think that, to me, has been one of the biggest eye openers in the last year or two that I have realized, you know, I hear it a lot about like medical conditions that you don't see, which in some cases are in some cases are not disabilities, but I just never thought about it in terms of more broadly, like disabled and what that really means. So yeah, those numbers just really hit me.
Cait Kirby: 8:56
Well, and, and on that it kind of brings up the question of how are we getting these numbers? And so, sometimes these numbers are actually just taken from people who are registered with whatever Office of Disability Services is on campus, or who gets accommodations. And so, we know that a lot of grad students just don't even register and as we'll talk about, I'm sure, it's because like getting accommodations in grad school is really challenging. It's really hard...
Elana Gloger: 9:27
It's expensive.
Cait Kirby: 9:28
...it's expensive. It's not as easy, which, I mean, it's almost never easy.
Elana Gloger: 9:34
Yeah.
Cait Kirby: 9:34
But the accommodations that grad students need are usually not what's sort of on the "menu" of accommodations in in the offices of disability services. But further then...we talked about how there are so few faculty members, but faculty members have a really challenging time with stigma and maybe they're hiding their disabilities from their offices on campus. And so we actually aren't 100% sure about what that picture looks like. Because, it is really hard to quantify that.
Elana Gloger: 10:13
Yeah. Wow. And and even as I'm thinking about that, too, right? I've talked on so many episodes about like, in academia, there is this unspoken, like, "just push through it", "this is supposed to be hard, just..." and like, at some level, yeah, like this is challenging. That's like an objective description of grad school. It should be challenging, but it shouldn't be inaccessible. And so I think that the line between challenging and inaccessible is really, really important. And I think that many abled students and faculty and I will include myself in that group, because this is something that, especially over the last, like I said, year or two years is really coming to light. So I'm not going to act like I'm above it, I'm past it. I'm sure I make tons of assumptions. But I think that this is something that, when we have this built in, "this should be hard to push through it, just get over it....", when somebody asks for an accommodation, whether you like it or not, your bias is "why aren't you strong enough to...?", "why can't you just...?" and that needs to shift for me and for others, it has nothing to do with willpower at all. And I think that that has been a mental shift for me that I'm very purposely making, because, I mean, they're like they're perpendicular. They're not related.
Cait Kirby: 11:24
Yeah, yeah.
Elana Gloger: 11:25
I would also love to hear how you guys met, because I know you're at different universities, and really also how the Twitter account came to be, because I think it sounds very clear from your description of like, why it exists. But why did you two feel like "we want to be people running an account" like that? Why was it important for both of you?
Kayden Stockwell: 11:43
Yeah. I mean, we meant met on the internet, because like you said, we go to different different universities...
Elana Gloger: 11:49
That's so cool! Internet friendships are the best.
Kayden Stockwell: 11:52
They're, they're fun. But yeah, we sort of met in this, you know, the disability, Twitter community, and then sort of disability in, like education sort-of-sphere. And so we were both interested in, like, creating a space that was focused on like actionable things that people could do at their own, like local communities, or their local or their own institution. And so the Department of Labor, right, does October National Disability Employment Awareness Month, to further increase awareness and increase hiring of disabled people in a variety of sectors. And so, you know, our world is grad school, and there are disabled grad students. So what can we do to make grad school more accessible? Can we talk about, sort of, illuminate some of the barriers that are there and then can we sort of provide actionable items that people can do to try and make their own institutions more accessible?
Elana Gloger: 12:53
Yeah, you and I know that, you know, for those of you listening, you want to hear the behind the scenes, we tried to make an October episode work. And by the time we were in chat, like chatting about it, I had all my October episodes recorded, I was drowning in schoolwork. And I was like, "the soonest I can do is December can we do...?" and so we're making it work. But certainly in future October's going forward, you know, this episode will continue to be shouted out. And I know that you guys had a whole sort of like daily hashtag event, I would love to hear a little bit about how that went. I did follow along with it. I tried to retweet as much as I saw things come up, but I was admittedly not on Twitter as often as I would have liked just because October and November during this squished COVID semester...Oh, boy! So, I would love to talk a little bit about like, how that went, what you learn from it, you know, I saw a couple different accounts doing and it was just really powerful... *MUSIC* Hey, it's Elana from the future. So, after recording Cait and Kayden decided that in addition to linking some of the accounts in the show notes, they also want to give a shout out on air. So here's a clip of Cait doing that now....
Cait Kirby: 13:56
So, we want to highlight the important parallel work that the Twitter account @DisInHigherEd did in October, as well, and you can find them on Twitter @DisInHigherEd, which is @D-I-S-I-N-H-I-G-H-E-R-E-D and you can follow their hashtags from October, which was #DEHEM. There are also many other Twitter accounts that are doing great things too. And we've linked them in the show notes, so please check them out and follow along to hear all about disability and specifically disability in grad school, higher ed, and academia.
Elana Gloger: 14:45
Thanks, Kate. Okay, back to the episode... I think it really helped my own awareness in terms of my actions, my biases and things that I need to work on going forward for sure.
Cait Kirby: 14:55
Yeah, well, so as Kayden mentioned, we were kind of like piggybacking off of the Department of Labor's NDEAM. But, we found that a lot of their takes were a little questionable, that we didn't really agree with some of the, like... narratives that they were putting forth, we didn't really agree with some of the framings of things. And so we wanted to sort of take the, like, bare bones structure framework of what they had, and then fill it in with maybe slightly more disability positivity, I would say more like, embracing disability instead of just trying to sort of overcome, which was kind of prevalent in their takes. And we also wanted to specifically tailor it to graduate school. And so there's quite a bit of research now into the experiences of disabled undergrads. This year, actually, I think three books came out about the experiences of disabled faculty members and academic ableism. But there is no research about the experiences of disabled grad students, there is just...I don't know, if there isn't funding for it, or they're not interested in it, I have no idea. But, so, we sort of recognized that there was this kind of niche that wasn't being filled, and that we have experienced our own struggles and challenges. And so we thought that we could kind of carve out this space to really focus in on this kind of unspoken experience. But we also recognize that we...our experiences are not *the* one disability experience, because there's not one experience, right? And we both are white people. And so we don't experience, the intersection of racism and ableism. And so, we both kind of come from the experiences that we come from with the privileges that we are afforded. But we still thought that we could kind of use the account to, yeah, promote these very actionable items, we wrote, like email templates to have people email their Director of Graduate Studies, or the chair of the department or whoever. But I think the most informative thing that we did was all these polls. And so most of the time, we ran some sort of a poll to sort of collect a little bit of information about other people's experiences based on our own. And I think having some concrete numbers, because, again, no one's really doing anything, we don't really have any numbers on anything. And so that that was kind of where the polling came in. And we can talk about maybe some of the interesting or shocking or really negative answers that we got, and how that might inform us going forward.
Elana Gloger: 18:14
I find that to be so extremely useful, like, as you're talking about, like the research of disabled students in grad school, not really being a thing. You know, I think a lot with my background, being in psychology, and specifically clinical psychology, I do assessments at my University's, like psychology clinic, run by our department, and I thought I would just drop a few numbers, because I was actually thinking about this as you were talking, as we're talking even about, like accessibility of the services to get Accessibility Services.
Cait Kirby: 18:43
Yeah.
Elana Gloger: 18:44
You know, at our clinic, we do assessments for things like ADHD, we don't support Autism assessments, just we don't have somebody who could supervise that. So like, legally, we just don't, but it's mostly like ADHD, or like a learning disability that we're able to assess for. And we have discounts for students. And that price is $450. For one assessment. Now, it is a fully comprehensive assessment. So it like does a full, like, we check for a million things, we do eight hours of testing, which also like, let's talk about accessibility, but that's fine. But we do like eight hours of testing, and we really, you know, either screen out or find out multiple things. But we don't work with insurance. So if people have insurance, we can give them anything to get reimbursement, but we don't do that. So that makes it a little bit less accessible. And the other thing we're hearing $450 like, Wow, that's so expensive. We're the cheapest in our area...
Cait Kirby: 19:33
It is.
Elana Gloger: 19:33
...we are most accessible. And we're $450--an
Cait Kirby: 19:33
Wow. this is not me dissing m department, because, you know at some level, like we're no funded by the University, so w only are funded and you know o r therapy services, I've sa
Elana Gloger: 19:42
...and the other thing that you had me thinking d before, like some people p y $5 or $10 for a therapy session. So, it really is quit accessible when you compare it But if you're not comparing it and you're just looking at i ...like...that is a lot of mon y. of, as we're talking about numbers that came from your polls, I think it would also be really useful just as we're about to really deep dive, really from either of you, if we could somehow define what disabled is, who are we talking about? I think the reason I'm asking this to be defined it -- this is a bigger word than I ever really realized. Not only that, this is not a bad word. I think that, you know, we hear word things like "special needs," we've seen the memes, for those of you on Academic Twitter, of people who are like, they go through the list of like, the things that they've heard themselves be called. And they're like, I'm just disabled.
Cait Kirby: 20:32
Yeah.
Elana Gloger: 20:33
...like, just call it that. So yeah, what who are disabled people? Like, what does disabled mean? Who are we talking about?
Kayden Stockwell: 20:41
So, we're not going to give you an easy answer.
Elana Gloger: 20:45
No, I don't. I don't want an easy answer. We can just like play with a working definition. Because I think it's, it's exactly that like for you both being in the disabled community, I feel like there's a mental concept of like, "yeah, I get it," but could I verbalize it? No. But yeah, give it your best shot. Give me your not easy answer. I'm here for it. I'm ready.
Kayden Stockwell: 21:07
So yeah, we, we thought about it. And our -- my, at least -- general stance is that any written definition you find, is probably going to be limiting, and exclusionary to some people. And one of the ig problems that is that you ll find is that a lot of the ti es these definitions, especially as you get into, like, qu te unquote, "official ones" by l ke government agencies re generally created by abled-people. Not always, ut generally. And so sometim s, like formal definitions can be useful to like star a conversation if someone has l ke no background in what disabil ty is. But I think like, once ou sort of maybe give that init al formal definition to like st rt a conversation, it helps to k nd of just, like go into he "but..." or the critiques of "here's why this is limiting or not exactly 'the end all be all
Elana Gloger: 22:00
Yeah, it's tough. Cait, do you have anything to add in that definition of it's everyone but not everyone?
Cait Kirby: 22:08
Well, so I think, thinking about the information that you just shared about testing, I think that's a really great example of why our definition is too limiting is that with testing, we basically have decided that some assessor, whether it's a doctor, or it's whoever's at this clinic, has the power to decide, right? We are putting the power of the decision about disability into the hands of some person. And then access to that person can be limited based on geography, or based on time, or based on money. But also, the assessor has biases. And the metrics that we use can be really biased, based on who they were, who the original doctors were assessing, when they designed the assessment, and what biases we have about individuals. And so often, when people are trying to get diagnosed, their diagnosis can come down to whether or not the doctor perceives them as being like a reliable narrator. And so if you're a woman, if you're a person of color, if you're poor, the doctor just might think that you don't know enough, that you're not educated enough, that you don't fall into the right category to be a reliable narrator. And so you're probably hysterical, or you're lying, or you just don't understand what's going on. So, all of that makes it so that oftentimes people don't get diagnosed when they really should be. And so having a very medicalized definition, which is the one that happens at these assessments for accommodations, they're the ones that the governmental organizations use to give you benefits, or to help you get the care that you need, using these really medicalized models can be really harmful. And so there's this other model that sort of more like a social model of disability -- and there are a number of models -- the predominant one that oftentimes we are socialized into is that medical one, but oftentimes folks in the disability community also kind of think through this social model, in which we think more about disabled people as being disabled by the society by all these barriers. And so I don't know if any of that was helpful in coming more towards the definition. But I think it just gives you like a little bit of context.
Elana Gloger: 25:11
Yeah, I mean, listen, you know, I should have caveated, when I started that, like, I did know going in that, like, there's not a good definition, and I think, Kayden, you bring such a good point that almost all like, I want to quote unquote, call it official here, but like governmental or institutional definitions are created by abled people looking to try to define this other to themselves, they're looking to put it in a box because they don't understand it. And as somebody coming from clinical psychology, I hear a lot about this medical model that you talk about, Cait. It's interesting, because from a clinical psychology standpoint, we do a lot of things different than the classic medical model of things...in treatment of psychological disorders, or what have you. Now, in the assessment of it, you just made me really think about, like, how do we do it? And in the program, I'm currently and we really have a clinical science focus, which is a heavily evidence based and less clinical judgment of like, "what do I think? Oh, that's valid if I think that as an expert." We really, we move away from the expert model, we try to really be a lot more...there's a word here, collaborative, there it is. And it still got me thinking. Now, I don't know this, because not all disabilities are visible, I don't know off the top of my head, if I can think of a disabled grad student in my program, not to say that there aren't any, but in terms of what I'm currently aware of, I don't know. And yet we are making these judgments or, you know, judgments based on -- sure -- valid measures of whatever. But what does valid mean, when you think about how they're created and who created them? And...
Cait Kirby: 26:37
Yeah.
Elana Gloger: 26:38
...it's a really good point to bring up. And something that you also made me think of, is this word "enough". I am not a disabled person, I do have some different intersectional identities. What I've talked about on the podcast is that I'm bisexual, and I've always been in a heterosexual relationship. And I've had this in my mind in terms of just thinking about an identity thing, of part of the reason I hadn't come out for many years, it was like, "Well, I'm not bisexual enough, because I don't have quote, unquote, proof people can't see it." I'm not, you know, I'm very cis-gendered as well. So there's nothing about me visibly that someone would say she's not heterosexual. The reason I bring up this comparison is to say that there's also something to be said about when we're assessing for any kind of ability, that, "Oh, you know, they're right on the borderline, they're not quite x or y or z enough for us to call it this." And that has me feeling angry as we're talking...that I'm like, that is erasure. I mean, like, I know, I brought it up before, but I've, I'm making this connection live as we're recording really, to my own work of...it's very dismissive. It can be very dismissive. You know, I have seen there have been times when like, we give a diagnosis of something, and it's very affirming, those are good-feel times to be like, "Yes, this is--this describes," like, there are also other people who experience this that you can connect with and it can be very affirming. But on the other side, when it's like, "No, you don't have this thing..." it can leave people very feeling very lost, of like, "Well, how do I explain what's going on?" because, "I'm having difficulties with something or I'm having things that I have more barriers than I noticed other people have. So what do I do, then?" I don't know, I don't even know if I have anywhere to go with this comment, its just to say that like you, once again, if I say this, a million times my wheels are turning, which I think is valuable. It's just it's really interesting.
Kayden Stockwell: 28:23
Yeah, I think you make a good point, because in that sort of like, the clinical classification classifications of, you know, "do you have quote-unquote like "enough" of the of the DSM, the diagnostic criteria to get this diagnosis?" can be the line between whether somebody then has access to services or to accommodations at their University, or whether, you know, "here's an acknowledgement that you're struggling, but because you're not, quote unquote, struggling 'enough', we can't help you, or at least not in any formal setting."
Elana Gloger: 28:52
Yeah. And I'll say too, you know, without -- there's gonna be no HIPAA violating here -- but just to say that, in any ADHD diagnosis I have given, anytime that there's a borderline, me personally, I usually come to my supervisor with the argument of if they're on the borderline, there's enough that I don't want to...I don't want to be, me -- 24/25 year old student in training -- don't want to be the reason that this person can't get accommodations for their college career onward. Like, I...I have no right to make that call. And so if we're saying, there's enough going on that we're wondering, who am I to say? You know, so I usually like to lean on the side of "yeah, let's write the damn letter," what effort -- it's going to take me what 15 minutes to fill out our form letter with their information and send it off and then I never think about it again, but it gets to change their entire college experience and perhaps mental health and life? Yeah, I'm going to spend 15 minutes to make that call. So, that's where I like to live. And I think my clinic does as well, though I really am not, and cannot speak for them for liability reasons. But from my impression, that is how you know, but that's not everywhere. And that's not every clinic and that's not everyone's bias, you know, so, I like to err on the side of, you know, quote unquote caution with it. But, that is not how everyone leans I can tell you that, from what I've seen on Twitter, on the outside of the disabled community for sure.
Cait Kirby: 30:12
Yeah, well, and I relate a lot to your anecdote and like, relating the "enough-ness," I think it's also very true with individuals who have like chronic illnesses, or they have fluctuating disabilities, that you might have an illness or a disability, that is "enough" on the day before you get tested. But then it's not, quote unquote, "enough" when you actually are tested and where I really hope that maybe we can have your wheels turned to and you can -- yeah -- is like, like the realization that if somebody is on the borderline, that you might be preventing a person from getting accommodations, I would argue that having anybody in a position to make any decision is actually like a barrier, right? And, and so often in the disability community and the movement there is, and I mean, it's been around for a while now, there's this concept of universal design, which is basically just designing things and planning thing is to make them accessible to the greatest number of people based on size, and age and ability and race and gender and everything. And, there's like a more specific part of it. That's about universal design for learning, where you basically make all of your materials accessible to everyone in all formats, and you provide choice of engagement. And I think if we can move towards that model, where you don't even need to give somebody accommodations, because you have created everything for them that is already accommodating, I think that would then no longer position anybody to be the person who grants or permits people to have access via these assessments and medicalizing and pathologizing procedures.
Elana Gloger: 32:33
You know, and you -- I don't often swear on the show, but I am going to drop a swear word here -- because, being a grant-er, as we'll...it feels f***ing weird. I have no right.
Cait Kirby: 32:44
Yeah.
Elana Gloger: 32:45
...that is kind of how I feel it is a very, and I'll just be straight, it is a very uncomfortable position to be in, because it kind of feels wrong. And I've always kind of felt that way when I'm like, "...mmmm...are we looking at it...?", you know, and this is, ya know, I'm not, you know, this is nothing on my supervisor. It's nothing on the training, nothing like that. This is the state of the world. But it is weird for me to be making a judgment on somebody. And I know that's the job. Like, I know, I didn't end up in a job there, at least in some sense, but it is. It's strange. And I think that when you when you talk about that, and I want to make sure we get back to these numbers you mentioned because I'm sure that this might be wrapped up in this as well. But as we think about the pros and cons of COVID
Cait Kirby: 33:28
Mm hmm.
Elana Gloger: 33:28
The things that we were seeing -- that I was seeing I should say. I say "we" just like, I mean "me" , I say this all the time, where I'll say the word "we" and then I'm like I'm talking about myself, I'll say things like, "Oh, yeah, we're dropping the episode." And I'm like "we"? Like, no one does this podcast with me, like, I am dropping this. I don't...I work alone -- But things that I was seeing in March, about, you know how...ugh it's like, I'm feeling already angry, as I'm about to say this, but like...how quickly universities were suddenly, magically able to provide everything online. And I'm like, I was noticing this and I was...I didn't think anything of it. Until I saw people online who were like, "How many years have I petitioned my University to provide me this so that I could attend class if I couldn't physically make it to campus that day? A pandemic hits. Six days later, they have an entire infrastructure for the you know, 50,000 students at my University and suddenly because the ableds need it, it's happening. And I had this, and I'm, I just got like sweaty because I all of a sudden was like, holy sh*t. It is 2020. This has always, not always, you know, in the last 10 years, been possible. And I, I cannot imagine what kind of--like how--I'm like trying to verbalize this but like, as a person, I would feel like not a single person give a sh*t about me if that were me. I would feel kind of worthless and be like they don't get they don't care. I am nothing to this university. And I'm not saying...I'm not saying that that person is worthless. I'm saying that if I were in that position, I would feel like there was no point. Why? And we talk about attrition. So when I say thinking about COVID, clearly, universities have the infrastructure.
Cait Kirby: 35:08
Yeah
Elana Gloger: 35:09
I don't know what the world will look like when things are back in person. I wonder as you were speaking about making things available and accessible in all contexts, do we -- this is a we -- do we think that this will be folded in to increase accessibility? I mean, what is the disabled community talking about? About like, the effects that this could have positive or negative? Do we think that universities are suddenly going to go back to like, "well, we only had the infrastructure then, but now we magically don't?" I mean, what do you guys think? Like, I'm just I didn't mean to make you laugh. I'm glad I'm funny.
Kayden Stockwell: 35:44
Yeah, it's like, it's a good point. And I think there's a lot of maybe fear of like, you know, eventually, someday, when things are safe to be in person, again, that there will just be this giant rollback of online learning, because a lot of at least professors that I know, are not big fans of having to do the, like recording of lectures and stuff. And so uhm...
Elana Gloger: 36:08
I have so many feelings about that. But I'm going to hold it back so you can keep talking...
Kayden Stockwell: 36:12
So yeah, I think there's a lot of fear that there will be a lot of rollback once a vaccine is out, or however this is...this moves forward, and that disabled peop e will sort of be back in situ tion of "your request for zoom attendance of classes deni d.", "It's not a reasonable acco modation," or something I know in some places I know for like non-University acco modations of like doctor's offi es and telehealth visits have already, for some people I know rolled back where they prev ously been able to make appo ntments online. And that func ionality is now gone. Beca se...
Elana Gloger: 36:45
Okay, that doesn't even make sense to me. Because isn't that easier for doctors?
Kayden Stockwell: 36:49
You would think.
Elana Gloger: 36:50
Like, like, as somebody who's doing therapy over telehealth, it is like, I mean, I could do it from the university. And it would be just as easy of like, how much more accessible --don't even get me started on therapy, accessibility to people, I can't get started. But like, ugh -- it's easier as a doctor to not, like, if people are going to be late, less often people are probably more likely to attend if they get to do it from the comfort of their home. Not to mention, like when we think about doctors, I did not mean to cut you off Kayden and I just like feel really, as somebody who's worked in doctors offices, like if somebody needs a five minute appointment just to get a refill on a prescription, like how much time it saves them or like they wouldn't have to take off work if they could do it from their lunch hour at their desk could be like, "Yep, still need this! Still fine! Bye!"
Kayden Stockwell: 37:29
Exactly. Yeah, exactly. That happened to me as I had a specialist appointment, because normally an hour and a half drive away from me, and I could do it on my couch. And it was literally a 15 minute appointment. That was what it would have been if it was in person, but I didn't have to commute, I didn't have to take time off of doing things...
Elana Gloger: 37:45
I just like don't...I have a lot of feelings. I have a lot of feelings about this. And...and I have feelings about this and I'm not being affected by it! I'll say that right here. I'm not having feelings because I'm affected. I'm having feelings because people need to get their sh*t together. It's just...It disgusts me. Honestly, that's the...that's the emotion I feel, I feel disgusted.
Cait Kirby: 38:02
But, I will add, because nothing is ever so easy as, as COVID has made access better for everyone because it hasn't, right? There are actually tons of ways that COVID has reduced access, a lot of, like, as Kayden mentioned, not all faculty are keen to have to do things online now, and aren't really...there are some faculty who aren't really changing what they're doing to be online. And so they're still having just like multiple choice exams, and now they're just having students open the computer and have the the camera on. And if their eyes move too much, then they're accused of cheating. Or if they physically move too much, then they're accused of cheating. Or if they talk to themselves, then they're accused of cheating. And these are all things that that disabled students might do, right? I mean, abled students might too! But this is a particular issue for disabled students who might move around a lot for their exams, or who might speak the questions and their answers out loud as they're answering them. And never mind all the access issues of like having a computer with a camera and all of that or having a quiet space where you're by yourself and you don't have other family members or cats, or whatever it is that might be moving around in your background. And so I actually wrote...I co-authored a blog post about exactly this. About how COVID increased access for all students, which was kind of a slap in the face to disabled students. But how it's also like it's not all great. There are there are always going to be challenges. And we have to make sure that we're not leaving anybody behind. Anytime that we adapt, we need to be adapting for everybody, not just the easiest people to adapt for.
Elana Gloger: 40:14
Yes, I think that that's key, right is I think that within the abled community, it's the sense of like, "Oh, I get a gold star, I did this thing, and I'm done." And that shouldn't be how it works. And you know, as I'm thinking about this, you know, we're talking, we're talking about all students here, as we've been talking, I would love to -- now, finally, 20 minutes later, bring it back to...what are some of the things that you guys learn specifically about like grad student needs? And what grad students are saying, or what people in this higher education community are saying, I mean, even what came to mind as I was thinking, as I was, like, wow, I was thinking about how like quals, for some people, is like that eight hour sitting and typing thing. And I was like, "well, that sucks for everybody." Not to mention if that's an inaccessible way for you to demonstrate your knowledge. So that, like, that was one thing that came to mind that may or may not be in your polls. But I would love to hear some of these numbers that you said were like, really kind of shocking. As it talks about going forward, what kind of advocacy work you'll be doing?
Cait Kirby: 41:07
I think one point I'd like to make, before we jump directly into the numbers...
Elana Gloger: 41:12
Perfect.
Cait Kirby: 41:12
...because I've now written it like three times in our notes, because it keeps coming back up again, is this concept that like rigor, that like academic rigor, is incompatible with accessibility, that we need to have this eight hour long typing qualifying exam, or, for me, it was, I think, like two hours standing up giving a talk and just being interrupted over and over again. And so like, the idea is that if we give you these accommodations, we're lessening the rigor, if we allow you to do your qualifying exam in three pieces, then are you achieving the same as the other grad students are? And I think that's just such a wrong answer.
Elana Gloger: 42:02
The answer is "Yes." Well, first, it's f*** you and then it's "Yes." But I agree with you.
Cait Kirby: 42:09
Yeah. And so, I think that, probably and we, we haven't asked to anybody this in any of the poll questions, but I think our except appearances, the anecdotes that Kayden and I have shared with each other, and the results that we got about the questions that we did ask, I think that a lot of the responses that we've gotten have been because faculty and Program Directors and Directors of Graduate Studies and, and chairs, and whatever all these have, people don't want to make this change, because they think the rigor is the important thing, and that we can't have, like, we can't be good grad students and good scientists, if we're not miserable and tired and overworked and if we don't do it in exactly this one way. And one of the polls that we ran, I think we got an N of 59 participants. And so the question that we asked...if I can find it here, okay, "If the disability office approved you accommodations, have you ever had a professor fail to provide your accommodations?" And we had 59 people answer, and out of those 59 80% answered, "Yes." And so these are students who had accommodations approved by the office, and a professor was basically just like, "No."
Elana Gloger: 43:50
Grad students?
Cait Kirby: 43:51
I don't know...I don't know if we specifically required it to only be grad students or not...
Elana Gloger: 43:57
Fair enough, I mean, it's bad either way.
Cait Kirby: 43:58
Yeah.
Elana Gloger: 43:59
But I thought I'd just check in. But yeah, no, that's disgusting. Back to my word. Gross. And maybe this is a really radical opinion, but maybe not. My reaction to that...is that that is...illegal. Like that is discrimination....legally.
Cait Kirby: 44:15
Yes.
Elana Gloger: 44:15
Okay. I was like that's illegal....
Cait Kirby: 44:16
That is correct.
Elana Gloger: 44:17
Okay, just wanted to like...
Kayden Stockwell: 44:17
Yep, totally illegal.
Cait Kirby: 44:18
Yeah, yeah, yeah, totally illegal.
Elana Gloger: 44:20
Cool. Totally. Great. Okay.
Cait Kirby: 44:23
But, I mean, that's part of it. And I don't think that we've gotten to ask this poll question. Actually, maybe we asked it...about like, what, like, is there a grievance procedure for if a professor...
Elana Gloger: 44:38
You know, there's not.
Cait Kirby: 44:40
...neglects...Sometimes there are. And they're nothing. I mean, it's basically you just like write an email and complain. But yeah, there are there are no consequences, right? That's one of the challenging parts about tenure. Is that tenure, once a professor has gotten tenure, they can now do whatever they want. And, while that's great for like academic freedom and getting to ask the kinds of research questions that you want, if a person is consistently not providing accommodations, they should be reprimanded slash fired.
Elana Gloger: 45:13
They're breaking...*the law*. You know, *intro music* Hey! It's Elana from the future again. Right it makes me think like. around this time I got back on my soapbox about things being illegal, but I didn't really know what I was talking about, nor did I really include any of this in my outline with Cait and Kayden, so none of us were prepared to discuss the law. And instead, I'm going to skip over this minute and a half of group confusion, and instead, you can find more information about the legal rights of disabled college students in the link listed in the show notes. Okay, back to the episode. ...it kind, of well, first things first. The blog post you wrote that you mentioned back a couple minutes ago, totally gonna link that for the episode. I love that. If you have any more, I'm ready. I love blog posts, I'm ready to link them. But it also made me think, you know, the only comparison that I can draw...And I know that you guys have the disability services office at most...all universities...I say most because some are more active than others. But the only comparison I can draw is because I'm Jewish, there are some holidays that fall on weekdays. And I had a professor who had an Organic Chemistry exam on Yom Kippur, which is a Jewish holiday where we fast, can't drink or eat a day. Although I will say, my personal opinion, Judaism is really good about like, if you can't fast, here's what you can do instead, that's like on a health measure, very whatever, not getting into it. But like, there's a lot of disabled rabbis that I follow on Twitter, who talked a lot about that intersectionality, anyways, off topic. But I basically told the rabbi at my university, "This person is having an exam this day and when I told them about it, they were like, 'it's not a university holiday.' and I was like, 'so this is like, this is a religious like exemption like you have to do it for me.'" And the rabbi, like, went to that person's office with me and was like, "Hello, this is illegal." and made them accommodate me. And I don't know if there's anyone to go to bat for you. I mean, I'm sure like you said, the Disability Resource office, maybe they send an email? What happens? What does happen on your end? Like, if things aren't accommodated? what do students have the option to do other than send an email for accommodations, and then wait for the professor to maybe give a sh*t about it or not, or ignore it because they can. Because no one's holding them accountable.
Kayden Stockwell: 47:16
It vary so widely by University and even within University in terms of how active your office is, how many students are on their caseload, because a lot of times is a very small, underfunded offices that serve a lot of people. Sometimes Disability Service offices are run by disabled people. At my undergrad for a long time the director was disabled. Um, that's definitely not, I don't even know how to call that common. It can also just depend on biases held by who's in the office. So like, I had Disability Service Office employees go to bat for me in undergrad. And I'm sure that that was facilitated by the fact that I was relatively quiet, considered well spoken in terms of like neurotypical norms, that I was a white person. And if I had held other marginalized identities, I don't think I would be confident in saying that I would have had the same support behind me.
Elana Gloger: 48:11
Mm hmm. That's important.
Cait Kirby: 48:13
Well, and I think part of it is, if your accommodation is one that you walk into the room, and they're either giving you the accommodation or not, you have to decide, "Okay, they're not going to give me the extra 20 minutes..." because, for example, if you get extra time on an exam, and you find out that they're not going to give you the extra 20 minutes, do you just go in and take the exam? Or do you not take the exam and take zero on the hopes that you're going to get an appeal with the accommodations office, right? In that instance, you can't write an email and wait, you have to make a choice in the moment. And that's a lot of added stress. It's a lot of added labor for a student to have to advocate for themselves to maybe take an exam, knowing that they don't have as much time as they are legally offered. And so like in the back of their mind, while they're taking the exam, they're worried like, "Oh, I don't have enough time. Oh, no." And so that's going to impact their performance on the exam. And they can always go to the disability services office afterward, and potentially appeal. But now the professor might argue that, "Well, they've already seen the exam. And so they can't go back and take it again." And they're not going to write another one. And so there are all these sort of like in the moment, choices that are being made. And then all the extra labor. I mean, we did a poll on that too.
Elana Gloger: 49:46
Yes. I love these polls. I'm obsessed with this. I love it.
Cait Kirby: 49:51
I mean, so like, I love polls also, which is why I was like "every day we have to do a poll!"
Elana Gloger: 49:56
Oh my gosh, I love that. This reminds me I should probably do a poll for the podcast. But anyways, I love...I'm a big poll fan.
Cait Kirby: 50:02
Oooo, yeah. Okay, "If an accommodation was not provided, how long did you spend advocating for the accommodation, or stressing over the lack of accommodation?" And again, we didn't differentiate between undergrads and graduate students. But more than 60% of respondents said that they spent months advocating or stressing over a lack of accommodation.
Elana Gloger: 50:31
Sorry, for anyone listening who didn't just see my like, visceral reaction to that. So I was gonna guess before you said anything. So I made a gue s in my head, and I was like, " h, like maybe three hours?" That was the number that came to min
Kayden Stockwell: 50:40
And that came up when Cait and I were sort of of like, "yeah, a couple h urs, probably"...mo creating the polls when we were setting what's, what's the timescale of the answer choice is going to be? And it was my suggestion that I was like, "Oh, you know, hours, weeks, months" and Cait was like, "Whoa, I was thinking, you know, on a timescale of somewhere between, you know, like, hours and maybe like a day or something like that." And, yeah, I'm glad that we ended up going with the timescale that we did, because apparently, it was, for a lot of people, months that they spent advocating and or worried about this.
Elana Gloger: 51:15
I think you made a podcast host speechless.
Cait Kirby: 51:17
Hahahaha
Elana Gloger: 51:20
Wow, give me some more polls. I think that this is so eye-opening...like truly. And it sounds like even for you guys, you know, when we talk too about like, the diversity of identities that may intersect along with disabilities, or just the diversity of disabilities themselves, like, like you said, we don't really have any idea who this is impacting how it is impacting them, how it's holding them back. So I love that you have some numbers on these. Are there any others that really stood out to you that you think are like really valuable to talk about here? I mean, I'm sure there are, but what are some of them?
Cait Kirby: 51:55
Well, I think the one that is personally the, I guess, the closest one to my ex perience and that I really wanted to have as a poll was, "If you have ever considered taking a leave of absence from grad school due to disability, chronic illness, or mental health, did your ability to pay for health care factor into your decision?" and so here we had a slightly lower N, it was only 27. But a little over 10% said "No, it didn't factor in", a little over 15% said "Yes, and I took leave," and that...Wait a second. The math on this poll looks a little funny. Am I right?
Kayden Stockwell: 52:43
Yeah the math looks a little funny on those...
Cait Kirby: 52:45
We need...hold on second...we have to re-crunch that number.
Kayden Stockwell: 52:48
I redid the math on that poll. If you're on polls page, Cait. I don't know if you are...
Elana Gloger: 52:53
I love how organized you guys are "the polls page". I'm like living. All right.
Cait Kirby: 52:59
All right.
Elana Gloger: 52:59
Should we jump back in then?... *outro music* The End of Part One! What a cliffhanger! Will you ever find out the results of that poll? I guess we'll have to wait until Thursday to find out. You can find this week's guests on Twitter @DisInGradSchool. That's @D-I-S-I-N-G-R-A-D-S-C-H-O-O-L, or on their personal pages for Cait, @CaitSKirby, that's @C-A-I-T-S-K-I-R-B-Y and Kayden @KaydenStockwell and that's @K-A-Y-D-E-N-S-T-O-C-K-W-E-L-L. If you want more 'Dear Grad Student' you can find the podcast on social media. You can find the podcast on Twitter at @DearGradStudent on Instagram @DearGradStudentPod and on YouTube by searching "Dear Grad Student Podcast". If you just want to connect with me online, you can find me on Twitter at @elana_gloger. That's @E-L-A-N-A_G-L-O-G-E-R. And, if you like what you heard on the podcast today, catch up on all your missed episodes! December is the perfect time, things are relaxed, you don't have as much assignments, and send your favorite episode to friend! Word-of-mouth really, really helps the podcast out. And if you can, please rate and leave a review for 'Dear Grad Student' on Apple Podcasts, Spotify, or, you know, wherever you find your other favorite shows. Reminder that all of the resources and links that we mentioned in today's episode can be found in the description. And until next time, Warmest regards...Best Wishes...Sincerely...Elana.
