librarypunk - 094 - Disability Archives Lab feat. Gracen Brilmyer

Episode Date: June 23, 2023

This week we're joined by Gracen to talk about the Lab, accommodations, death and remembrance, Crip futures, and lots more!  Transcript: https://sonix.ai/share/EshPDeD7BmqS2zUR4V3PoUL4 https://linktr.ee/disabilityarchiveslab https://twitter.com/DisArchivesLab   http://disabilityarchiveslab.com/blog/  https://litwinbooks.com/books/preserving-disability/#:~:text=Preserving%20Disability%3A%20Disability%20and%20the,approaches%20to%20the%20archival%20profession.  Media mentioned https://bookriot.com/illinois-has-officially-banned-book-bans/  https://lostinthestacks.libsyn.com/episode-560-what-is-the-disability-archives-lab?tdest_id=157087 https://mukurtu.org/  https://www.dukeupress.edu/work-requirements https://firstmonday.org/ojs/index.php/fm/issue/view/728 

Okay, then I'll play the theme and we'll go. It just gets us in the mood to go. What did they go? I'm Justin. I'm a Skalkan librarian. My pronouns are he and they. I'm Citi. I work IT at a public library, and my pronouns are they them. I'm Jay. I'm a music librarian, and my pronouns are he him. And we have a guest. Would you like to introduce yourself? Sure. Thank you. My name is Grayson Berlmeyer.

And I'm an assistant professor at McGill University School of Information Studies. and the director of the Disability Archives Lab, and my pronouns are they them. Welcome. Thank you. Good to have you. So yes, we're going to talk about the Disability Archives Lab.

I heard you on Lost in the Stacks. And this is one of the many ways. It's actually, I don't even really listen to that podcast. I don't know how I came across it. That was the very first library podcast I ever listened to back when I was in undergrad. And I was talking about becoming a librarian. It was Lost in the Stacks.

That's how I learned about, like, um, uh, bit rot and stuff. I had a good episode on that. Yeah. I don't know how it came across, uh, my feed. Because I, I really don't really like most library podcasts. I think they're over edited. Um, and there's, I think it's like NPR.

I think people who make library podcasts also like NPR. And so they want to make them like whatever the NPR podcasts are called. I forget. Talk chop. Talk, talk chop. Talk in talking shop. Liberal bullshit. It. Talking,

Tocin, talking Nardo. I don't remember what it's called. Radio Lab. There we go. You weren't even close. Yeah. Talking shop with Radio Lab. But first, I'm going to do some news because it's just a follow up on something we did before.

Illinois has officially banned book bans. I believe we talked about this exact bill. Basically, it ties state funding to the library, the ALA's library bill of rights. So you have to adopt it as a policy. And then you, it just preempts local book bands. So I thought, I thought it said that it didn't actually know which, which library bill of rights it was going to use yet. Might be the ALA, might be one created by. Oh, right. Yeah. I think this might have been like maybe an earlier version of the bill that I'm thinking of. Illinois finally has a good governor. Can you believe it? I'm from Illinois.

originally. Like, I was a Kevin Blighovich happened. Like, wow, he's not watergating himself. This is amazing. It also, it could have been like another state that I was thinking of that has got a bill like this going where it just, yeah, it just preempts local book bans. And so good news. And it's, I think, pretty smart legislation.

Looks like it passed pretty easily. So, you know, get on it other states. There are so few laws that actually impact libraries like privacy laws. like archival laws. There's like, I had to look this up one time when we were making archival privacy policy, but it was like 10, 15 states have laws about archival privacy. Anything else is just like, yeah, like the cops can just walk in and start going through boxes. There's like no privacy laws. If it's in the state archive, you can show up. So, like, cool. Well, here's my next project. How to delete information. And so then we did a series of talks about how to

to do digital forensics and delete information and stuff like that. And also not take information that you don't need, for the love of God, stop taking people's social security numbers. Why are you doing that? I'm sure Grayson runs into this in their work. But yeah, that was it. So, Grayson, thanks for coming today. I really am interested in hearing about the Disability Archives Lab and, like, just tell me how it got

started. Sure, yeah. I started it a couple years ago. And it's basically was just, I mean, it's essentially a website. It's a way to digitally connect a lot of the projects that I work on and make sense of them, make new narratives between them. And then also, importantly, like as an avenue to find funding and fund projects and pay, disabled people for their time and expertise, that is incredibly important to me.

and it's a great privilege to now have access to granting bodies to be able to do that. Yeah, I'm really trying to focus it as like a space to host a bunch of community-based projects and collaborative projects and get people connected with one another. That sounds awesome. Is there a funding source for it? Is it institutional or grant-based? There's not a single funding source for it, but different projects have different funding for. So you're like coordinating people? Yeah, yeah, yeah. I can relate.

Yeah, and right now I'm talking to some folks about, like, yeah, co-applying for different funding and like what they're in the U.S. And I'm based in Canada. So we're trying to figure out, like, what funding bodies apply across these borders to make international projects happen. Yeah, North American grant funding, I imagine, is not fun because we're not in a, not an economic union like the EU. Yeah, I don't envy you, but let me know how that turns out because I would love to do stuff with Canadian colleagues.

Yeah. I know some people have just decided to base their projects in the U.S. who are at Canadian universities, but have partnered with like Texas Digital Libraries or Arizona libraries to host like journals because the libel laws are different. So the journal of journal reviews is based in the U.S. for that exact reason because scientists, can be pretty litigious about their precious little articles. If you read Retraction Watch, you will know that people are getting sued left and right all the time. Wow.

Yeah, right now it's just looking like we just pick a PI based in a particular country and focus on that set of grants, but then I also have been, yeah, just offering my grant writing services to PALS in order to get money to fund their projects that are related to stuff I'm doing too. And I like this idea of like an archive as something because like, you know, in like traditional definition of archive, it's like of an institution or a person. It's like the ephemera that is produced. And then it's the archivists that curate it and catalog and process it and put that all together. But really honing in on archive is about like connection and discoverability. So it doesn't necessarily need to be a specific type of ephemera.

So I like how it's like an archive of like projects that are being brought together as well as resources. I think that's a really cool way of envisioning what an archive can be. Because I feel like people just say archive to me just like anything. It's a website. No, thank you. I appreciate that. And we're actually in the, we just finished the first year of an FRQSC grant that is going towards building an actual digital archive. But that is similarly messy.

and expansive. So I'm hoping, I mean, in my dreamland, I'm hoping that this digital archive, it will be a post-custodial digital archive around disability. I don't want ownership over anything. And so, yeah, post-custodial means all of the ownership stays with the originators of records. And I'm imagining that it will be sort of, it'll function as an umbrella to host and fund different archival projects and again connect them all together in a kind of constellation of records, whether that's looking historically at existing repositories and trying to get digital copies of records that we can link out or funding projects like oral history projects or scanning people's posters and ephemera that they have to sort of create a big mess of

records to tell some more complicated disability histories. Yeah, that is. the issue is, you know, you make a website and then how do you archive it or you make a digital project? How do you archive it? Where does it go? And then, I mean, honestly, the answer is always, like, the institutional archive is always the safest place. You throw it on CDs and you put it in a fire safe. Like, at least it will be there in 50 years. But I like the living archives aspects of, like, you know, digital archives that can be accessed now, you know. Yeah. Yeah. But I think the physical part also is like really salient. I'm like already intimidated by like thinking about like storage capacity and yeah, like the sustainability of a project like this, which is why I think having it be not having

having not having custody over any records is also helpful if they're hosted elsewhere and we're linking to them. But a big part of this conversations too with other disabled folks who have physical stuff is like, okay, if you want your stuff, preserve. We may scan it or something in the future, but where does it go if you want an actual repository? So I've been chatting with some folks about finding a home for their actual stuff too, which has been really nice to think about. Sometimes larger institutions are helpful in that regard because they have the ongoing funding to sustainably keep some of the physical records. And also the digital preservation too can be tricky. At my university, our digital preservation pipeline is just stalled since we lost our digital archivist.

So stuff is still getting preserved, but not in the kind of like 75, 100 year timeline that I want it ideally preserved in. But it's in a good like 10, 15, 20 year state. So we're not super worried about it. But every once in a while, we're like, let's throw some of these on DVDs. or M-Discs or something and put them in a file somewhere, especially if it's something like we just had a project about COVID, and they didn't get consent to share the records, but they want to preserve the records.

So we're like, well, people can see them in 75 years. So we'll put them away. But, you know, 75, 100 years will take the embargo off. But you've got to write your consent forms better. So tell me about like a project that's, you've got all these different projects living in different places. Tell me about one you think is really cool. Well, top of the brain is definitely this digital archive.

And it's, I guess, this past year has been focused on just having conversations with other disabled folks about what that might be. So a lot of my research and the labs research has to do with like talking to other disabled people and having community-based research. And yeah, after, I guess, a professional. previous project where I had had all these conversations with folks about using archives, about, you know, feeling erasure, feeling misrepresentation, feeling historical violences, which are, you know, disabled people are documented in all kinds of ways, not just through these violent histories, but our activism, our resistance, and our stories like, like Disability Visibility Project is a great example. So through all of this

previous research, I just had so many more questions about like what we might do differently if we were to sort of reimagine an archive together. And so yeah, this like central question just emerged of like how do we as disabled people want to be remembered in the future? And I started thinking about all about Crip Futurity, which is if you don't mind me going into a little bit of disability theory. I believe Alison Khafer was the first person to have named it outright, but thinking about some fictional utopias that imagined disability out of the future through medicine and technology, through eugenics, essentially. And that has really been resisted through a bunch of disabled people who have been thinking about how disabled people keep each

other alive through, you know, access, networks of support, mutual aid, information sharing, and kind of building the futures that we want. And then I was thinking about this in combination with archival futures or these, you know, these questions that for me seem core to archival studies of like what we keep for the future and what we imagine would be useful for future users. So anyways, I ended up planning a number of focus groups with disabled people who had any experience researching disability and archives. So we could have really expansive conversations around what they've experienced, what they might want to be differently, and what might just need to be like completely reimagined. And these conversations will hopefully go into. to distilling a set of design principles for this archive to really think complexly about

core archival concepts like description and access and privacy and what that might look like in all its complexity for different disabled people. And so that's sort of the point where I'm at now is I've had all these conversations. I'm just sitting with these ideas. And yeah, I'm really excited and nervous and unsure of the next steps for actually, like, building a thing and what it will actually look like and how do we actually make it accessible and embody these really complex notions of privacy and access, of description, of reckoning with, you know, historical records or problematic terms and things like that. So a lot of it sounds like you're planning right now.

are you kind of building out like a series of archival standards before you want to start doing any of these projects? So it's similar to like you want to know what the system's going to look like. Is there anything you're already looking at as an example, like other fields that are doing digital archives? Yeah. I mean, I have, I've been working with one student just on metadata. And so we've been looking at different existing repositories that have records on disability, whether they're community archives or, particular projects on disabled stories or histories or archives that don't have anything to do with disability but have records or collections on disability. So yeah, we have started sort of

outlining the different metadata standards to think about information sharing and metadata mapping of like for part of a foundation. But then I think there's also a big piece of like how we might not want to do some of those things or how like a disability informed metadata schema might not conform to those things. Yeah, I think I had a second part to your question and now I'm forgetting it. Can you repeat your question? Can I? Is there anything you were looking at as an example? Things like other places that are doing collections like that or yeah. Yeah, yeah. Okay. Thank you very much. I have also been chatting with a person who has been for a long time working with Mercutu, which reimagines it like indigenous protocols into digital spaces, which is a CMS.

And that has been exciting to think of as a platform or a platform like that to think about, yeah, I guess looking to examples where community values inform the show. shape of a technology in different ways than it has been done. Yeah, I wrote about Mukatu a lot in my master's thesis on how, like, it is a good way to see that like, sort of patron-centered and patron-driven and patron-formed metadata and access is being put into practice that like that, that like, as we go forward, like, doing this kind of work in metadata, it's indigenous librarians and indigenous models of knowledge organization that are where a lot of this work is happening and has been happening,

because my thesis was focused on queer metadata, but a lot of this kind of, like, challenging metadata structures and access in digital spaces, like, a lot of that for like the past decade or two, that that is work that has been actively going on, especially in places like New Zealand and also now like the Pacific Northwest in the United States and like Canadian institutions with like First Nations librarians. Lots of good shit out there. Yeah, totally.

Yeah, and like queer and trans metadata, like all of these, yeah, examples of people who are sort of reimagining the ways that these systems can be used for in other ways than their, you know, perhaps colonial or imperial histories and goals. It's pretty exciting just to, yeah, to see. Yeah, I was actually talking to someone from New Zealand last night. And we got on the topic of indigenous intellectual property. And so I was saying like, you know, everyone kind of looks to New Zealand as sort of like this place that is doing a lot of interesting things. But it's got a lot of problems because it's using intellectual property, which is a patriarchal system. Like April Hathcock has a paper specifically like, this is the line from patriarchal dominance to copyright.

Here you go. It's a straight line. You know, it imagines things that are just not true, not only for, it's not even true. for our culture, but it's definitely not true for indigenous cultures. You know, trying to impose these things, then causes social reproduction that are problems. So it causes sort of like capitalistic and patriarchal ideas to reform themselves in new places. And then that also creates a political problem more than you try to critique it. And then the what we were making fun of sort of like the outraged liberal who's just like,

how dare you question the indigenous community? It's like, this guy's like a fucking landowner. Yeah, he's indigenous, but he's recreating capitalism. This is a big problem. You don't want to talk about these things, but it creates a political problem when you're creating a system that causes oppressive systems to reassert themselves. Yeah, there was a big discussion about that at the Music Library Association conference this year, where they around indigenous recordings in the Library of Congress's digital archive. I forget what the exact collection is called, but there's been a lot of issues. with like permission of like things that have been posted on there like historically that didn't

have permission and stuff. And so this one of the speakers on the panel was an indigenous copyright librarian and lawyer and talking about alternative modes of copyright and intellectual property that were sort of built with this like restorative justice model. And there was a lot of interesting stuff about it because it wasn't just, you know, like the way we view copyright. There were like different aspects of like what does this intellectual property quote unquote like look like if we want this sort of reparative type of relationship and cooperation to happen. But the guy talking also brought up that like it's good that there's like young indigenous hip hop artists that are breaking these rules and stealing this music that they're not supposed to because then that's creating good like culture and stuff that like just because oh we're doing this restorative justice or

model of using indigenous recordings and stuff that doesn't mean it's sacred. So yeah, it was a really interesting like panel discussion that that they did. I will need to look up what the model is, but it was basically like if you are a digital archive posting like indigenous sound recordings or basically anything like sort of showing not not provenance, but like the permission. It's like a permission justice type of framework instead of this is mine and this is how you can use it type of framework. But I think it still could be rooted, like, just because something is quote, indigenous doesn't mean it's good. And so, like, still could be rooted in these, like, these patriarchal ideas, just like, just and saying. But it was very interesting. Yeah, I'm finding

that through these conversations, especially around, like, privacy and access, like, with disability, it just gets so complicated. It's like, you know, like, I feel like disabled people are often, like, made to talk about our disabilities. And, like, when it comes to historical. records, certain things are documented without our consent. But at the same time, like, in these conversations, one person brought up, like, trying to look for records on a disabled person that they, like, knew this archive had records for, but those were embargoed because it was medical information. And so it's this really messy area of, like, personal, private, public, consent-based. It's very complicated and all the decisions that have made around that really impact how disabled people can access our own histories, but also might not desire everyone to be able to access those histories.

It was like I was saying earlier with those collections that didn't have proper consent. Like, yeah, I'm kind of on the archive side there. It's like, yeah, that should be embargoed. And that's why I also see it's important part of like my job to go to researchers. and get to them at the beginning of their projects and be like, please consider this now because the IRB is not going to tell you to think about it. They're going to tell you to think about, you know, not harming the subject of the study. They're not going to tell you how best to think about something archivally or historically

because that takes specialist training to start thinking of like, oh, 50 years is a long time, 75 years is a long time. 500 years is a long time. And yet, you know, that's the kind of scale you have to think about when you're talking about preservation and doing history. So moving on, though, because we have the outline of your book behind you. You have a book coming out or you're working on a book. Oh, a different book. Okay. Well, just move my computer.

So you can't see that. Well, you have, you're working on a book. I don't know if it's out yet. Preserving disability, disability in the archival profession. It is not out yet, but we are in the like end-end phases where, It's with the publisher. We're getting like a final, final review of feedback for each of the authors.

So yeah, it should be out. Hopefully late 2023 is what we're thinking. But yeah, I can talk about that more. Yeah, what can you tell us about it? Yeah, so it is, I am co-editing this collection of chapters with Dr. Lydia Tang. And it is, it addresses, I guess, disability as it intersects with the archival profession in a variety of different ways. And we also have this incredibly beautiful forward by Alice Wong, who writes about like what it means to consider oneself an archivist. So that is I'm incredibly excited for.

But I guess to say a little bit about the contents, we have, I think, 20 chapters. plus our introduction chapter that talk about different aspects of disability and different aspects of archives. And Lydia and I have sort of organized the chapters into three clusters to try to make sense of like this huge wealth of information that addresses the archival profession. So it starts with a cluster of chapters that take up navigating employment for disabled archivists. So some chapters address archival education or job applications or interviews or accommodations. And yeah, each of these chapters, I think, identify like a number of experiences in the archival profession, that the ways that ableism perhaps shows up in the archival profession or the ways that disabled archivists do feel better supported in their work. And I think all of this is really complicated.

The conversations around accommodations or retention are really complicated by precarious employment and contract work, as well as other axes of identity where people do or do not feel belonging as a disabled person working in archives. And then the next group of chapters, we highlight what the work looks like for disabled archivists. So we have some really cool pieces on description and rediscription by disabled archivists or accessibility assessments or outreach projects. And I think some of these chapters show how even like doing the work as a disabled archivist working sometimes on disability collections or on accessibility at one's workplace. really shapes the sense of oneself too, which is pretty magical. And then the last cluster shifts more towards disabled users. So we have a lot of first person narratives throughout the book and in this cluster in

particular about the impact of all of this archival decision making. So like what it feels like to be a disabled user researching like one's family history, for example, but also to be a disabled creator or a disabled educator that uses archives in particular ways. So I think that that cluster really helps show how disabled, what disabled people bring to archives as users and how they kind of transform records when they're doing research or using archives in different ways. Yeah, and I guess I'll just say that we've been incredibly lucky. The book is being published with Litwin. And the series editor, Michelle Caswell, has been incredibly supportive and has really helped Lydia and I on this gigantic journey of like doing like a call for papers,

like reading all these abstracts, wrangling like peer reviewers. And then getting also outside reviewers for the book as a whole. And also the project has been really collaborative to. which has been a huge treat. So each contributing author was one of the reviewers for another chapter. So they got to read each other's work and give feedback and help each other build their chapters. And then each chapter was also read by an outside reviewer. So it's just an enormous amount of humans who have like made this book actually happen. And I feel like I've just like wrangled the cats.

And that has been my job in making it happen. But I'm really excited for it to come out. I think it really, it's, I think one of the first books of its kind, and it really, like, marks this contemporary moment of where we are in both archival theory and archival practice when it comes to disability, which, in my opinion, is still like a pretty new topic of addressing in an archive. Yeah, I think so. I feel like there's all kinds of accessibility issues in libraries that just get ignored,

but especially archives just get like a special pass on all kinds of things, simply because no one pays attention to archives. But when you were talking about disabled workers and precarity and jobs, we had Alison O'Dell on recently talking about that. And she also mentioned the health risks of archival work. So being in the basement, being in the attic, exposure to molds and toxins, and a lack of exposure to fresh air and light. right, which helps sanitize things.

But yeah, go ahead. Oh, I was just going to add in like repetitive tasks and heavy lifting and, you know, sitting in particular ways that might not be appropriate for one's body. It is surprisingly hard to, because as much as like corporate workforce kind of health stuff is like, go have a walking group and stuff like that. I was like, hey, can someone do an ergonomic assessment of my office and I get bounced to 50 different emails and no one has ever. showed up to do an ergonomic assessment of my office.

And I'm like, I don't have an adjustable desk. I don't have like, I bought this like this steel case or whatever it's called chair because my when COVID started, my chair at home was in such a bad condition that I developed like a back problem. And I had to buy, you know, like a $900 chair to fix it. And like had to relearn how to sit. I mean, I'm sitting all kinds of wrong now. But until I fixed it, I had to sit like, you know, very strict.

all the time and retrain myself on how to sit. And I don't have that kind of stuff at work. And when I've said at work like, hey, I've got an employee with back pain, can we get one of these $800, $900 chairs because that's the only thing that's going to fix it? They go, well, it has to be in our ordering catalog. So, and then they get like a cheaper thing. And I'm like, that's not what I said. I sit you with the link.

It's $100 more. Get the right, get a proper ergonomic chair. Yeah. And it's like the easiest thing to fix. health problems. Yeah. Anything that costs even a small amount of money that you would spend anyway on chairs and desks just becomes impossible unless you're a university president,

then you get the nice fancy up and down desk like I have. It's my own money, though. Yeah. Yeah, I have in the Disability Archives Lab, we have another project on disabled archivists, similarly just talking to a bunch of folks about, like, what their experiences like at work and their jobs. and applying for jobs.

And yeah, it was pretty devastating to hear just like how common it is the struggle to get basic accommodations. Yeah, and how hard it is for disabled folks to navigate many different kind of archival archives expectations, not just like getting in the building or like doing their actual job, but like the different cultures of like, over production or different expectations around like conferencing and like being social. Like, yeah, this isn't like just a physical thing. It's like encompassing like all the ways that disabled people navigate all of these

different professional expectations for their body minds. I'm trying not to go too far off topic because I've got other stuff we wanted to ask about. But well, I think this follows in. sort of identifying and not identifying with your disability, disability as like identity. How do you see that impacting the disability archives lab? That's a tough question. I think, I mean, I am chronically ill and disabled, and it is a huge part of my identity and the work I do is incredibly personal.

But I guess my way of leaving space for difference in ambiguity and contradiction is really to let the folks who I talk to, like, identify in however ways that they do. For most of like the interview-based projects, I usually ask that people self-identify as disabled and that can mean all sorts of things to folks. And yeah, I don't really think it's up to me to, like, determine what is and is not, like, enough if you identify as disabled, like, then that usually, like, qualifies you to, like, talk about your experiences as a disabled person. Yeah, rather than what's, what's the called certification. They talk about this on a death panel, like medical certification model of disability or, uh, uh, diagnosis. Yeah, it was, there's a, there's a term they used by I think I'm. forgetting it. I haven't been keeping up with the podcast, so I've forgotten some of the terms they use. Yeah. I mean that also to like kind of hop back to when we are talking about consent, that like I think consent enters into the research that I do like so much around not only

having people consent to like participate in a research project and like be recorded, but also consent is ongoing. So I check in with people every time I'm going to use any of their words for anything that I'm publishing or putting on social media where they can edit any of their quotes. They can change the way they want to be named if they want to be anonymous or not or change the way that they're described. And with articles or book chapters, they read the whole thing. It can also give feedback on that.

But I guess one thing that I've learned with this disabled archivist project, which I 100% attribute to one of the participants. is that the ways that disabled communities intersect with archival communities becomes pretty small or smaller communities. And one participant, we had presented at an archives conference, my collaborator for that project, Veronica Denison and I. And after the conference, we didn't name anybody's name in the conference, but we did name certain aspects of people's disabilities as it made sense to explain particular

quotes that we were reading. And this person brought up to us later that they felt like they could be identified through just their information about their disability because it was specifically a professional archives conference. And yeah, I guess first I think I am grateful because I think that, I'm continually learning how to be more accountable to the people I'm doing research with and really reimagining like consent and anonymity and all these things in different ways. But too, I think it really was like such a gift to realize that like consent and identification,

like are not like stagnant things like some like and that really changes depending on like what space like we're talking in. And yeah, I think that was like, yeah, something that I will always now think about and incorporate into my research and I'm really, I would name them now, but obviously I won't have. But yeah, I think that is like something that I've learned through doing research is like through when I mess up or do things imperfectly and I'm like learning these, relearning these like core concepts to doing community based research in ways that it can be done differently depending on the context and the situation, which keep changing. Following up with identifying with disability, we have done several episodes talking about accommodations processes at work and particularly how that creates more oversight for disabled people only.

So it's, you know, you get like more rules that you have to keep up with rather than, and so you have to do more certification. You have to do more reporting. Does that come up in the book at all? In ways, yes. And also it like comes up and just like the sheer amount of like time like disabled people spend like, you know, like speaking from personal experience. Like not only the time it takes to just like be disabled of like moving slower or having fluctuating health or needing periods of rest, but also just like the amount of time. Yeah, like I spend asking for accommodations over and over or waiting. for things to actually get done or when, yeah, situations shift and like you need to send like emails and follow up emails and have other conversations. Yeah. So I think like the part of the books that addresses disabled archivists and more of the labor side really does highlight the like amount of time that it takes to like going that goes into having to not only having

to get accommodations, but also like what that means for somebody personal. like how, you know, I think disclosure and accommodations are very closely linked. And so, yeah, how I think, I always think about affect and feelings and, yeah, the ways that we like internalize the world around us. And I think that it's not only about the logistics of you just have to send an email or this is the go through HR or we don't, we're a small archive, we don't have HR. So you have to go through this person. But also, also just like the emotional process. And again, the personal piece of like outing oneself, describing one's needs, knowing one's needs when, you know, you don't have an accommodations office that can think like creatively creatively with you about like what might be helpful in a

particular situation. So yeah, I think that's like a big part of the time too is time spent just feeling. Yeah. Asking you, what do you need is always such a tricky question. I actually want to shift gears because there's been this topic I've been interested in, which is sort of digital deaths and planning for the future. And so by digital deaths, I mean like when like a platform or an online community goes away, that, you know, it kills connections. It's parts of your writing and things that go away. And since this is a digital archive too, you know, you've got to, like we were saying earlier,

you've got to plan for when do these projects end? When do they get preserved? And you talked about like how disabled people want to be remembered in the future. Could you go into a little bit more of how you're thinking about that in terms of like, I guess what's the top things that come up when you think about disabled futurity? Yeah, I guess in terms of like digital deaths. I mean that like, yeah, the longevity of projects is definitely something I think about. And yeah, I might not be the best equipped to talk about like when Twitter goes down.

But yeah, these like digital communities that are really vital for for our connections. But I guess like the first thing that comes to mine is like planning for and considering like actual deaths of disabled people as it is like a very real thing. I hold like my communities with immense care. And I, you know, think about how the pandemic really amplified certain eugenic logic. and the people that we've lost over the past few years, which I can't talk about without tearing up. But archival work is incredibly personal because of the people that we are losing, because of institutionalization, because of lack of medical and financial support, access to care, and those who are just like aging.

So yeah, that's like one of very many emotional parts of thinking about archiving with, with other disabled people. And I'm really like honor to have friends who are disabled elders to think about this stuff with of like what it means when we're like losing whole like, or we're at risk of losing like whole generations of disabled folks who have all of these documents that capture amazing moments in history. Like the fight for getting the ADA. Like those activists now are getting older. And so thinking, again, yeah, ways of the urgency, I guess, of like preserving, preserving this stuff in some way or the urgency of finding like physical repositories for it. But yeah, I think that it really, to me, thinking archivally about

disability is really about the people who we want to remember and who want to be remembered and in different ways. Yeah, it was, I guess because part of what I've been thinking about is most people are pretty bad at planning for either their physical death or a digital death. And I imagine a lot of people who have different types of illnesses are going to have to, they're going to have even fewer models of like how to how to plan, right? Do I plan earlier? Do I need someone else to do this?

Like, do I need proxies in these situations? So it's, you know, when you're talking about archives, you're talking about like a lot of stuff that are like the last, you know, how are people ever going to be remembered? And so that's why I've been wanting to talk about this. Yeah, I will say, though, I have been privileged to a whole network of younger disabled people who all share skills of making wills and like preparing for our deaths, which is really amazing. Yeah, and folks who are disabled activists who either prior to their death have been or are thinking about what's going to happen to their stuff. Yeah, I've talked about how I already keep my archival file pretty much ready for processing. So I've already got my acid-free folders. I've got the plastics where I need it.

I've got it all labeled correspondence, 2017, correspondence, 2018. So when I'm dead, it's ready to go out the door if anyone needs it. And so that's my, oh, yeah, that's my goth archiving project. I think having a lot of family members who work in the funeral industry and having like my first jobs in the funeral industry kind of like gave me a weird sort of okayness with the whole process and also a somewhat twisted sense of humor because my uncle would play pranks on people in a funeral home, which is always like a really cool place to do pranks,

I think. Yeah, I grew up. My grandma worked at a monument company, you know, where you go buy gravestones. And it was like in my town's cemetery. And I would just go hang out with her, like when I got out of school while my dad was still at work.

And so I just like hung out in a cemetery and like was there when people were fucking buying gravestones for their dead relatives and shit. It was very interesting. And that's why I'm like this. Make your kids goth, and then they're okay with all this stuff when they're advised. Yeah, this is how you both ended up so goth. It's true. Yeah, but I don't like the heat, so I only just wear black t-shirts and black running shorts.

And I'm like, done. Texas goth. Maybe I'll dance around to Morrissey a little bit. Yeah. I did want to ask, though, sort of out of personal curiosity, you're doing this edited volume with Litwin. What's the process? Is this the first time you've worked on doing an edited volume? pitch, like when you're pitching an idea to Litwin, how does that go? Because I'm sure we have

listeners who would like to know. Yeah, that's a really great question. Um, because yeah, this was my this was my first time doing an edited book. Um, but by way of really horrible planning, where I am only to blame, I was also editing a special issue of the journal First Monday, kind of simultaneously. It was like one month different, so everything was overlapping, and it was so hard to keep like 40 different pieces separate in my brain. So yeah, I was like experiencing one co-edited volume, which I did with Dr. Crystal Lee for this journal, which was a similar experience, but I guess to speak to this litwin book, this book project came out of the Society for American Archivision, Accessibility and Disability Section, where folks wanted to, were organizing a sort of book of this

sort and had, yeah, we're looking around for publishers. And so I, there was previously another person who was co-editing this book and then I was invited onto it, onto the project in their place in pretty early phases. So yeah, so we, the first major step I would say for folks interested in doing this was really fleshing out a book proposal. And some people do this by first doing a call for papers and having the whole book together. We did it kind of the other way where we had a book proposal, which described the book, describe the audience, describe kind of the themes we were hoping to hit. But we didn't yet, although we had some contributors who were already agreed to participate from the accessibility and disability section, we also knew we wanted to do a public call.

So it was really just like a proposal for what would happen as well as like a very realistic timeline. And for me that meant like really planning for people needing, you know, extensions getting their work in. And by extensions, I don't mean like a month. I mean like three or four months, because like life happens, health happens. And so making sure we had a timeline that was like super flexible depending on what our contributors could do and when. And that had sort of like all of the nitty gritty steps in it. And then yeah,

then I think a big part of the decision making process on what publishers we wanted to approach was we wanted someone who, a publisher who was open to like having, parts of the book open access or open to conversations, like having different formats, as well as who, I guess like the audience was a big part too of like what publishers audience would be interested in reading this. And with Litwin, which is related to Library Juice Press, they, and they already have sort of like an LIS audience who's interested in sort of critical approaches to the field of information studies. And so we just kind of felt that was a good fit. And we approached Michelle

Caswell, who's the series editor for their archive series. I forget what it's called exactly, off the top of my head. Yeah, and went through just like a number of conversations with folks about if, yeah, if they thought it was a good fit, what they thought we needed to do, and what kind of support they offered. Some publishers are way more hands on and do the peer review process themselves, Slitwin said that we could do it. So we handled all of that, which was an immense amount of work, but also we could do it in a way that we wanted, even though it took so many like spreadsheets and shared documents and folders and, yeah, and Google forms. So yeah, it was, it was a lot of work, but yeah, I'm pretty happy that we had like a lot of agency in the process, even though that

made like more work for us. But that that I guess is kind of how I would describe what it was like putting it together. Interesting. Yeah. So you did so much of it sort of yourself, especially with the peer review, was one thing I was interested in. I was just thinking because part of my job includes like open education and open publishing and library publishing. And it's like, you know, why do people keep going through traditional publishers? Why would they want to? Why would they, you know, I'm kind of curious like why more of these library science books. that are like chapters and edited volumes, why aren't they being made in like press books? Why aren't they being made in other places?

So I'm sure it'll happen eventually. I'm just still curious about like the industry and how it's changing and how much, you know, is it just too much work? Is it, you know, like what's the support that's needed, that sort of thing? Yeah, I feel like maybe the difference is like, I don't know. I feel like information studies as a field, you know, thinks about like the stuff and the processes and like that's a particular approach, which. I feel like is maybe field specific. But I was just reading the Todd Carmody's work requirements,

race, disability, and the print culture of social welfare. And this just came to mind. This is out of Duke. But I've read like a number of these books that I feel like are like Information Studies books because they take like a particular like set of documents or a history of a particular kind of document as the object to sort of trace a history. And so I feel like I'm seeing more of those in university presses. But yeah, I think still like the like clear information studies approaches to two archives or two libraries often get, not always, but often get in those specific presses. Makes sense. We're at an hour. So I usually want to do our last question. But would you, I know you wanted the questions up early. Would you mind if I changed it to a different question?

Sure. Okay. Because we used to do like imagine a future. And since you brought up crypt futures, I was like, okay, let's imagine a future. What would in sort of like an ideal society, we're using our imagination here. And in ideal society, how would we be handling disability in archives in a way that's not sort of erasing disability where we're imagining disability won't exist, right? How do we, what would you imagine that a perfect future, a, uh, a, uh, socialist utopia future would look like. It's always a hard question, but it's a fun question. Yeah, I don't know if I can speak to what like a perfect future would be. I mean, I guess I'll, yeah, come back to like concepts of crypt futurity of the ways that disabled people like have imagined themselves in the future. And I guess maybe you may have to edit out all of my ramblings here. Cut out silences. It's fine.

I guess I can answer that question by saying that, yeah, I don't think that this is at all like a perfect future. But I think like what disabled, what other disabled people have taught me and what I really hold with me is like disability as all the things that disabled people bring to the world. So not disability as deficit. But all of the magic that disabled people hold, all of the innovation. and resistance and creativity and imagination that people miss out on when their spaces are inaccessible or their attitudes are ablest or exclusionary. I think, yeah, and even with accommodations and access, I was having a conversation with a pal the other day who like we were talking about a particular initiative to make a building accessible and they

reminded me that like like access isn't like just bringing things like up to being equally accessible by disabled people but like access can be an addition like ramps can be like a beautiful architectural addition to your building it's not just like oh put a ramp and like then job is done, but, like, thinking creatively about, like, the aesthetics of ramps can, like, add to your building. It's not just detracting from historic preservation or, you know, adding a big metal or wooden thing on the side. So, yeah, I think that, like, with disabled people centered, I think we get all sorts of more magical and exciting conversations and existences. A great answer. That's why I like asking that one because I like having a future to go for.

If we can imagine a future, we can start working towards it. It's how I feel about it. And so, yeah, a world of universal design. You have to have something to look forward to even start during prefiguration, right? Yeah. Yeah. Yeah. And I think, too, though, that's like that, to me that also doesn't mean one thing. I think that's one thing about community-based work is like it's magical. it's emotional. It's like difficult and heartbreaking, but also like joyful. It's confusing. It's contradicting. It's messy, but also like clear and straightforward sometimes of like who I want to

support and what stories I want to be told or who I want to be listening to to to help me like find or change directions. So it's like all of that contradictory messiness that I think is the gem. Great. I think we're good to wrap up. Then is there anything you want to wanted to plug like your social media or website or anything we didn't mention already. So you can find more out about the lab at Disability ArchivesLab.com. We have a blog called ReRecordings, that is Disabled Perspectives, Thinking about Archives Broadly Construed, and you can find that at our website slash blog. And you can also find us on Instagram at at Disability Archives.

Lab and Twitter is at Dis Archives Lab. And you can find out our link tree at L-I-N-K-T-R-E-E-Sash-D-BILITY where there are links to all of that stuff, as well as a few PDFs of articles that are based on some of the conversations with other disabled folks about archives. It'd be cool to see this in conversation with the human trash dump project on internet archive that we talked about last year and like thinking about what archives and the disabled body and like the disabled body as

archive and all that like the sort of like embodied archiveness of disability and stuff is just really interesting to me. So I'm excited for this project. Thank you for coming on. Yeah. Thank you so much for the invitation and for this conversation and yeah holding feelings for or holding space for my feelings. We have a lot of feelings on this podcast. Don't worry. It's a feeling podcast. And that is weird because I did think about human trash dump too while we were talking. Yeah. That's weird. That was like a very long time ago. Yeah. Okay. Thanks again, Grayson. And good night.