1 00:00:01,000 --> 00:00:06,139 ♪ Opening theme music ♪ 2 00:00:13,646 --> 00:00:17,984 Hello, and welcome to this episode of ArtsAbly in Conversation. 3 00:00:18,018 --> 00:00:20,253 My name is Diane Kolin. 4 00:00:20,253 --> 00:00:26,192 This series presents artists, academics, and project leaders who dedicate their 5 00:00:26,226 --> 00:00:32,198 time and energy to a better accessibility for people with disabilities in the arts. 6 00:00:32,198 --> 00:00:37,604 You can find more of these conversations on our website, artsably.com, 7 00:00:37,604 --> 00:00:42,542 which is spelled A-R-T-S-A-B-L-Y dot com. 8 00:00:43,543 --> 00:00:48,681 ♪ Theme music ♪ 9 00:00:55,455 --> 00:01:01,294 Today, ArtsAbly is in conversation with Elizabeth McLain, an assistant professor 10 00:01:01,294 --> 00:01:06,933 of Musicology and Director of Disability Studies at Virginia Tech. 11 00:01:06,966 --> 00:01:11,471 You can find the resources mentioned by Elizabeth McLain during this episode 12 00:01:11,471 --> 00:01:15,575 on ArtsAbly's website in the blog section. 13 00:01:15,608 --> 00:01:18,945 Welcome to this new episode of ArtsAbly in Conversation. 14 00:01:18,978 --> 00:01:23,650 Today, I am with Elizabeth McLain, who is Assistant Professor 15 00:01:23,683 --> 00:01:28,188 of Musicology and Director of Disability Studies at Virginia Tech. 16 00:01:28,221 --> 00:01:30,090 Welcome, Elizabeth. 17 00:01:30,123 --> 00:01:32,325 Thanks. Thank you for having me. 18 00:01:32,358 --> 00:01:34,594 Thank you for taking the time in your busy schedule. 19 00:01:34,627 --> 00:01:36,896 I know you are very, very busy. 20 00:01:36,930 --> 00:01:38,231 Yeah, thanks for working around that. 21 00:01:38,264 --> 00:01:40,900 I really need to work on my schedule. 22 00:01:40,934 --> 00:01:42,469 It's a bit much. 23 00:01:43,136 --> 00:01:47,907 I always like to know a little bit more about my guests. 24 00:01:47,941 --> 00:01:52,111 I wanted to know a bit about your background, who you are, 25 00:01:52,111 --> 00:01:55,548 what made you start in music, things like that, 26 00:01:55,548 --> 00:01:57,817 How I got started in music. 27 00:01:57,817 --> 00:02:00,820 I grew up in a family where music was very important, 28 00:02:00,854 --> 00:02:03,857 but it wasn't anyone's day job. 29 00:02:03,857 --> 00:02:09,095 So all of my family members played brass instruments, and they did it just for fun, 30 00:02:09,095 --> 00:02:13,199 but I was the first one to want to go to music school and pursue that. 31 00:02:13,233 --> 00:02:17,203 I was working on a degree in trumpet performance 32 00:02:17,203 --> 00:02:20,974 when more of my disabilities manifested. 33 00:02:20,974 --> 00:02:26,713 I'm autistic, but didn't really get a formal diagnosis until my 20s. 34 00:02:26,746 --> 00:02:32,719 I also have Ehlers-Danlos syndrome, which causes all of my joints to dislocate 35 00:02:32,719 --> 00:02:36,322 when they want to, among other fun things. 36 00:02:36,356 --> 00:02:39,459 When I was in undergrad, 37 00:02:39,459 --> 00:02:43,763 I think my second into my third year, 38 00:02:43,796 --> 00:02:47,033 my ribs started dislocating while I was playing trumpet, especially 39 00:02:47,066 --> 00:02:51,170 when I was playing piccolo trumpet, which requires just a lot more force. 40 00:02:51,204 --> 00:02:52,872 It was very confusing for doctors. 41 00:02:52,906 --> 00:02:56,609 They didn't immediately catch that that's what was happening, and it still took, 42 00:02:56,643 --> 00:03:00,180 I mean, almost another decade to know why it was happening. 43 00:03:00,180 --> 00:03:03,116 In fact, if I hadn't gotten the autism diagnosis, I don't know 44 00:03:03,116 --> 00:03:06,619 if I would have gotten the diagnosis for Ehlers-Danlos syndromes. 45 00:03:06,619 --> 00:03:10,890 And these two things seem to both correlate with each other. 46 00:03:10,890 --> 00:03:12,692 If you have one, you're more likely to have the other, 47 00:03:12,725 --> 00:03:14,561 but also the other way around. 48 00:03:14,894 --> 00:03:19,933 So on top of just asthma and other things that were putting pressure 49 00:03:19,933 --> 00:03:25,471 on my lungs and on my rib cage, very clearly this became 50 00:03:25,471 --> 00:03:27,941 not a viable career path, let me put it that way. 51 00:03:27,974 --> 00:03:30,977 I explored orchestral conducting for a while, which I liked 52 00:03:30,977 --> 00:03:32,712 and I think I was pretty good at. 53 00:03:32,745 --> 00:03:36,883 But after going on some auditions, I realized that the path 54 00:03:36,916 --> 00:03:41,221 to get there was just odd. 55 00:03:41,221 --> 00:03:45,291 It was very much based on personal charisma, and there's a lot 56 00:03:45,325 --> 00:03:46,759 of obstacles to navigate. 57 00:03:46,759 --> 00:03:50,830 I was used to the sexism from being a trumpet player 58 00:03:50,863 --> 00:03:52,999 where women are still a minority. 59 00:03:53,032 --> 00:03:58,037 But it really did not seem like a viable path in terms of, 60 00:03:58,037 --> 00:04:02,609 Oh, if I put the work into it, I will end up being able to make a living off of it. 61 00:04:02,642 --> 00:04:07,614 It was a lot more confusing than that, and especially with my health falling apart, 62 00:04:07,614 --> 00:04:09,215 I didn't know if I could count on it. 63 00:04:09,215 --> 00:04:13,419 I met a professor, his name is Michael Saffle, 64 00:04:13,419 --> 00:04:16,089 at Virginia Tech, where I did my undergrad. 65 00:04:16,289 --> 00:04:20,360 And he just needed a research assistant to work on a book about Liszt 66 00:04:20,393 --> 00:04:23,029 and some letters between Liszt and D'Agoult. 67 00:04:23,062 --> 00:04:27,000 And I could step in and help with my background in French. 68 00:04:27,033 --> 00:04:29,936 And that's when I learned that I was musicologist. 69 00:04:29,936 --> 00:04:31,404 It just seemed to fit. 70 00:04:31,437 --> 00:04:36,776 A lot of the skills that I had, whether it was learning different languages or 71 00:04:36,776 --> 00:04:40,146 I had been also working on a bachelor's in history the whole way along 72 00:04:40,146 --> 00:04:43,449 and things like that, everything fell into place. 73 00:04:43,483 --> 00:04:46,486 So then I did my graduate work at the University of Michigan, 74 00:04:46,519 --> 00:04:51,791 where as I acquired more of mobility disability side to my chronic health 75 00:04:51,824 --> 00:04:58,498 disabilities and really got the name for why my brain was so different and why 76 00:04:58,531 --> 00:05:01,200 I was struggling, got that autism diagnosis 77 00:05:01,234 --> 00:05:07,307 I became involved in disability organizing first at the local level, 78 00:05:07,340 --> 00:05:09,876 things that needed to get done at the University of Michigan, 79 00:05:09,876 --> 00:05:14,981 and bringing the knowledge I had and the knowledge I was gaining every day 80 00:05:14,981 --> 00:05:19,252 to the the School of Music, Theater and Dance. 81 00:05:19,285 --> 00:05:23,089 I don't want to forget Theater and Dance just because I'm not talented in either. 82 00:05:23,089 --> 00:05:26,225 But the School of Music, Theater and Dance at the University of Michigan, 83 00:05:26,225 --> 00:05:28,528 Musicology Department. 84 00:05:28,561 --> 00:05:31,731 It was a gradual thing. 85 00:05:31,764 --> 00:05:36,969 I was doing a lot more on the activism side than getting into pedagogy. 86 00:05:37,003 --> 00:05:43,776 It took many years before I realized that disability was infiltrating my research. 87 00:05:43,776 --> 00:05:48,815 I came to Virginia Tech in 2019 to be an instructor full-time 88 00:05:48,815 --> 00:05:52,418 while I was finishing up my dissertation. 89 00:05:52,418 --> 00:05:56,789 That timing will probably bring a lot of bells for folks because then the pandemic 90 00:05:56,789 --> 00:05:59,992 hit and everything became a lot trickier. 91 00:06:00,026 --> 00:06:02,495 But I finished up and defended my dissertation 92 00:06:02,528 --> 00:06:06,733 and graduated in August of 2022. 93 00:06:06,766 --> 00:06:09,602 I defended my dissertation, I think 94 00:06:09,602 --> 00:06:14,173 it was less than a week before I had major surgery 95 00:06:14,173 --> 00:06:19,512 to have a spinal fusion, and I had to do all of my revisions and all of the submission 96 00:06:19,545 --> 00:06:24,684 and paperwork and stuff in the first week that I was out of the hospital for that. 97 00:06:24,717 --> 00:06:27,353 So it's a bit of a blur, but it's very nice to have it done. 98 00:06:27,387 --> 00:06:30,356 I'm very grateful to Mark Clague and everybody else at Michigan 99 00:06:30,356 --> 00:06:32,725 that helped me cross the finish line. 100 00:06:32,759 --> 00:06:37,864 So yeah, this year I started as my new role, as you mentioned, 101 00:06:37,897 --> 00:06:40,833 Assistant Professor of Musicology in the School of Performing Arts 102 00:06:40,867 --> 00:06:44,036 in the College of Architecture, Arts and Design here at Virginia Tech. 103 00:06:44,070 --> 00:06:47,173 But then I'm also Director of Disability Studies in the Academy of 104 00:06:47,173 --> 00:06:52,245 Transdisciplinary Studies in the College of Liberal Arts and Human Sciences. 105 00:06:52,278 --> 00:06:53,513 That's a lot to say. 106 00:06:53,546 --> 00:06:58,050 I did it without notes this time, so I'm very proud of myself. 107 00:06:58,251 --> 00:07:01,487 Yeah, that's a bit of how I got from where I was to here, I guess. 108 00:07:01,521 --> 00:07:04,257 Yeah, and which explains the busy schedule. 109 00:07:04,257 --> 00:07:04,924 Yes. 110 00:07:04,957 --> 00:07:11,397 I'm straddling two colleges, two units, two completely different lives. 111 00:07:11,397 --> 00:07:15,501 Frankly, learning about disability studies as I go, I didn't have access 112 00:07:15,501 --> 00:07:18,838 to being able to take classes in disability studies. 113 00:07:18,871 --> 00:07:19,972 And that's not unusual. 114 00:07:20,006 --> 00:07:24,477 A lot of professors of disability studies have to add this knowledge on 115 00:07:24,477 --> 00:07:27,513 after they're done with their coursework. 116 00:07:27,547 --> 00:07:33,786 So I do my best to read one chapter, one article in the realm 117 00:07:33,820 --> 00:07:36,422 of disability studies, but also disability activism and arts and all 118 00:07:36,456 --> 00:07:39,592 of that, disability culture every day. 119 00:07:39,625 --> 00:07:42,695 And I fail a lot of times, but I do succeed a lot of times. 120 00:07:42,728 --> 00:07:48,334 I'm hoping eventually - my lived experience is at one level, and I'm 121 00:07:48,367 --> 00:07:52,605 hoping the academic knowledge to talk about it, they'll meet soon. 122 00:07:52,638 --> 00:07:53,973 That's my hope. 123 00:07:54,440 --> 00:07:58,611 But you're also the co-chair of the Music and Disability Study Group 124 00:07:58,644 --> 00:08:01,113 at the American Musicology Society? 125 00:08:01,147 --> 00:08:02,782 I was until recently. 126 00:08:02,815 --> 00:08:06,118 I did step down last year, which was a year early, and 127 00:08:06,118 --> 00:08:07,920 that's why it looks like I still am. 128 00:08:07,954 --> 00:08:11,624 I stepped on a year early because my co-chair, James Deaville, and I 129 00:08:11,624 --> 00:08:16,562 had talked about the need for the co-chairs to overlap 130 00:08:16,562 --> 00:08:19,098 so that we don't lose two at the same time. 131 00:08:19,098 --> 00:08:24,003 Because I had such a busy schedule and so many research projects going, 132 00:08:24,003 --> 00:08:26,873 I offered to be the one to step down first. 133 00:08:26,906 --> 00:08:29,775 But I'm really proud of the work that we did there. 134 00:08:29,775 --> 00:08:35,815 It was wonderful to be able to step down and walk away and know that 135 00:08:35,815 --> 00:08:38,351 everything I wanted for the group 136 00:08:38,384 --> 00:08:42,889 was going to manifest with or without me. 137 00:08:42,922 --> 00:08:47,293 We'd made several gains, but I could just see the that we're on and I think 138 00:08:47,326 --> 00:08:52,231 bringing new energy in has been really helpful in continuing that. 139 00:08:52,431 --> 00:08:54,233 This group is really fantastic. 140 00:08:54,267 --> 00:08:57,637 It's really a good group of people 141 00:08:57,637 --> 00:09:02,208 who really are activists in their field, 142 00:09:02,241 --> 00:09:05,978 try to make things happen, you including. 143 00:09:05,978 --> 00:09:11,450 I'm really happy to have been able to work with this group also and with 144 00:09:11,484 --> 00:09:13,486 different people from this group. 145 00:09:13,519 --> 00:09:18,891 I think you can be really proud of what you've accomplished in that. 146 00:09:18,925 --> 00:09:22,662 Yeah, my big goals for the group, I love seeing that they're happening 147 00:09:22,695 --> 00:09:24,130 even when I'm on the sidelines. 148 00:09:24,163 --> 00:09:29,001 Making sure that we're collaborating with people from different fields, 149 00:09:29,035 --> 00:09:32,872 centering the experience of disabled artists, which may sound like 150 00:09:32,905 --> 00:09:39,712 a no-brainer, but when you're in this work, it's very common for stuff to slide 151 00:09:39,745 --> 00:09:43,149 into music studies of disability. 152 00:09:43,182 --> 00:09:45,751 We're talking about disabled composers or disabled performers performers 153 00:09:45,785 --> 00:09:49,488 or whatever, but we're not really applying a disability studies lens. 154 00:09:49,522 --> 00:09:53,693 And a lot of times, maybe the people studying it aren't themselves disabled 155 00:09:53,726 --> 00:09:57,129 or aren't in community or don't have that background. 156 00:09:57,129 --> 00:09:59,498 And there's a lot of great work that falls into that category 157 00:09:59,532 --> 00:10:01,000 that I use every day, and I love. 158 00:10:01,033 --> 00:10:02,535 It's fantastic work. 159 00:10:02,535 --> 00:10:07,139 But I wanted to make sure we were growing this segment of music studies 160 00:10:07,139 --> 00:10:12,078 surrounding disability that really was bringing disability studies to the table and 161 00:10:12,111 --> 00:10:17,817 trying to find ways in which our academic work could have a real-world impact. 162 00:10:17,984 --> 00:10:22,321 So, yeah, it's been really cool to watch the group do that. 163 00:10:22,321 --> 00:10:24,657 I go on record all the time, so I'm not afraid of doing it here, 164 00:10:24,690 --> 00:10:29,528 that I'm very disappointed in the lack of access in our society, 165 00:10:29,528 --> 00:10:31,030 in the American Musicological Society. 166 00:10:31,063 --> 00:10:33,099 I think we've actually taken some steps backward 167 00:10:33,132 --> 00:10:35,768 when it comes to access in recent years. 168 00:10:35,801 --> 00:10:38,838 And that's the one thing that I'm nervous about. 169 00:10:38,838 --> 00:10:40,473 It's not the future of the group. 170 00:10:40,506 --> 00:10:44,410 It's whether people like me can continue to be a part 171 00:10:44,410 --> 00:10:49,882 of this society, whether this society will continue to serve us or let us serve them even, 172 00:10:49,915 --> 00:10:53,753 or if one day we end up either needing to strike off on our own 173 00:10:53,753 --> 00:10:58,224 or find another organization like the Society for American Music or RAMPD 174 00:10:58,257 --> 00:11:03,329 or something like that that we can take this fantastic work to. 175 00:11:03,329 --> 00:11:08,668 Yeah. And recently, there has been conversation about someone we know that who is part 176 00:11:08,701 --> 00:11:15,141 of a group and who had to step down from presenting because there were a lot 177 00:11:15,174 --> 00:11:18,677 of access needs that were not met. 178 00:11:18,711 --> 00:11:20,579 And so it's sad. 179 00:11:21,580 --> 00:11:25,618 Especially when you see a smaller society like the Society for Music Theory 180 00:11:25,618 --> 00:11:29,955 offering a significant amount of their programming online, not just for 181 00:11:29,955 --> 00:11:35,261 people who have gone through this onerous accommodation process, but for everyone. 182 00:11:36,028 --> 00:11:41,100 I love the curb-cut effect, and it's an example of that, where disabled people 183 00:11:41,133 --> 00:11:46,539 needed to be able to access the society remotely for presenting and for attending. 184 00:11:46,539 --> 00:11:51,077 But doing that also benefited parents of young children who couldn't travel, 185 00:11:51,110 --> 00:11:55,548 people who are in employment situations where they're not getting any funding 186 00:11:55,581 --> 00:11:57,883 for traveling or they can't get their teaching covered. 187 00:11:57,917 --> 00:12:01,854 It ends up helping a wide range of people, including people who are part 188 00:12:01,887 --> 00:12:05,191 of our society but can no longer travel to the US with visa restrictions 189 00:12:05,224 --> 00:12:08,928 or all sorts of things like that. 190 00:12:08,961 --> 00:12:13,999 The fact that, again, a smaller society like SMT has been able to accomplish it, 191 00:12:14,033 --> 00:12:16,635 I feel like that should be an example for AMS. 192 00:12:16,669 --> 00:12:19,805 Although when it comes to curb cuts, I'm… 193 00:12:19,839 --> 00:12:26,011 This is completely off topic, but I'm having a lot of frustrating feelings. 194 00:12:26,045 --> 00:12:30,950 When we're taping this, it is a week after the US election. 195 00:12:30,983 --> 00:12:36,655 I was thinking about the fact that when we talk about disability and access, 196 00:12:36,689 --> 00:12:40,993 this idea of curb cuts as a metaphor, the fact that when you give disabled people 197 00:12:41,026 --> 00:12:43,696 access, many people benefit from it. 198 00:12:43,696 --> 00:12:48,934 Coming from when we've had to retrofit sidewalks to have that little cut 199 00:12:48,934 --> 00:12:51,203 in the curb so you can go up there in a wheelchair, 200 00:12:51,203 --> 00:12:53,973 well, that's also going to help people pushing around grocery carts 201 00:12:53,973 --> 00:12:57,843 or strolers or just all sorts of folks. 202 00:12:57,877 --> 00:13:03,582 The thing that makes me furious about curb cuts is when disabled people fight 203 00:13:03,616 --> 00:13:10,022 for them alone, and then they benefit everyone, and then disabled people 204 00:13:10,022 --> 00:13:14,059 have to fight to keep them because we're always in danger of losing our access. 205 00:13:14,059 --> 00:13:16,762 It's Anita Cameron who reminds minds everyone. 206 00:13:16,796 --> 00:13:19,298 You have to fight for your rights and then fight to keep them. 207 00:13:19,331 --> 00:13:21,033 You can't let off the pressure. 208 00:13:22,234 --> 00:13:28,007 But then on top of that, there are times when it feels like in the United States, 209 00:13:28,040 --> 00:13:29,642 we're gearing up for a lot more fights. 210 00:13:29,675 --> 00:13:31,477 We're gearing up to try to keep Medicaid. 211 00:13:31,477 --> 00:13:33,379 We're gearing up to try to keep access to our health care, 212 00:13:33,379 --> 00:13:35,981 a lot of things that have been threatened. 213 00:13:37,383 --> 00:13:41,453 And it's been infuriating to see people I know who benefited 214 00:13:41,453 --> 00:13:45,224 from the work disabled activists did, from disability legislation. 215 00:13:45,224 --> 00:13:50,563 I mean everything from caps on Insulin to the Americans with Disabilities Act 216 00:13:50,596 --> 00:13:53,432 to infrastructure changes like curb cuts. 217 00:13:53,465 --> 00:13:57,336 And not only are they not in the fight with us, but they try to tell us 218 00:13:57,336 --> 00:14:00,406 everything's going to be okay because they've never had to fight for 219 00:14:00,406 --> 00:14:03,175 this thing that they take for granted. So I don't know. 220 00:14:03,175 --> 00:14:06,212 When I think about curb cuts, I think about the fact that that should produce 221 00:14:06,245 --> 00:14:09,014 more solidarity with disabled people. 222 00:14:09,048 --> 00:14:13,519 And instead, too often it's interpreted as, Okay, we can give you 223 00:14:13,552 --> 00:14:16,322 this cookie because it will also benefit benefit other people. 224 00:14:16,355 --> 00:14:17,423 I don't know if that makes sense. 225 00:14:17,423 --> 00:14:19,391 Yeah, it makes sense. 226 00:14:19,391 --> 00:14:23,896 Yeah, I've been perseverating on it a little bit. 227 00:14:24,463 --> 00:14:28,200 But in a way, we are both part of an organization called the RAMPD 228 00:14:28,200 --> 00:14:32,471 that you mentioned briefly, and RAMPD is doing 229 00:14:32,504 --> 00:14:35,975 that work inside the music community. 230 00:14:35,975 --> 00:14:41,680 I wanted to know a little bit about your arrival to RAMPD 231 00:14:41,680 --> 00:14:45,985 and your work with people in RAMPD. 232 00:14:46,619 --> 00:14:50,055 Yeah, I came into RAMPD. 233 00:14:50,356 --> 00:14:55,461 I was not in the founding cohort, but I think fairly quickly, 234 00:14:55,494 --> 00:14:57,196 definitely within the first year. 235 00:14:57,229 --> 00:15:01,500 It was Gaelynn Lea, who's one of the cofounders of RAMPD, as you know, 236 00:15:01,500 --> 00:15:06,138 who really encouraged me to join. 237 00:15:06,438 --> 00:15:08,440 It's a little interesting. 238 00:15:08,440 --> 00:15:11,310 Unlike you, I'm not currently performing as a musician. 239 00:15:11,343 --> 00:15:13,412 At first, I thought, Well, this isn't quite for me. 240 00:15:13,445 --> 00:15:17,416 I'm happy to support it, but it's really only for artists. 241 00:15:17,416 --> 00:15:20,019 It really hasn't been the case, though. 242 00:15:20,019 --> 00:15:22,621 I've had the good fortune at Virginia Tech. 243 00:15:22,621 --> 00:15:26,892 My colleague Ashley Shew and I, and some other folks here 244 00:15:26,926 --> 00:15:29,795 and at the University of North Carolina, Charlotte, 245 00:15:29,828 --> 00:15:33,032 received a grant from the Mellon Foundation for what we're 246 00:15:33,065 --> 00:15:36,535 calling a Disability Community Technology Center that's really trying to bring 247 00:15:36,568 --> 00:15:40,339 disability culture and arts and folks that talk about 248 00:15:40,372 --> 00:15:43,475 disability justice to Appalachia. 249 00:15:43,509 --> 00:15:46,745 Working with RAMPD, it's been fantastic to then be able 250 00:15:46,779 --> 00:15:51,617 to connect with artists and start building these residency programs, which 251 00:15:51,617 --> 00:15:55,955 have been delayed significantly because we've lacked accessible infrastructure 252 00:15:55,955 --> 00:15:59,325 when it comes to venues, especially. 253 00:15:59,358 --> 00:16:02,695 We had to put things on hold and then try to get venue problems 254 00:16:02,728 --> 00:16:06,598 fixed and raise funds for that and then find alternate venues. 255 00:16:06,632 --> 00:16:09,435 Now we're gearing back up. 256 00:16:09,468 --> 00:16:12,738 But it's been really nice developing that project in partnership 257 00:16:12,738 --> 00:16:15,975 with all of the folks at RAMPD who are doing this work. 258 00:16:15,975 --> 00:16:19,578 I've been able to serve mostly on the membership committee. 259 00:16:19,611 --> 00:16:25,050 I think I was on PR for a hot minute and then jumped over to membership 260 00:16:25,050 --> 00:16:26,752 or engagement is what we call it. 261 00:16:26,785 --> 00:16:31,357 But a lot of the stuff we're dealing with is membership, and then some of them planning. 262 00:16:31,690 --> 00:16:35,894 I had the opportunity to speak to the National Independent Venue Federation 263 00:16:35,894 --> 00:16:40,265 a while back, I think almost a year ago now, about trying to improve 264 00:16:40,299 --> 00:16:45,437 accessibility for their venues and ways that you can do it, even on a low budget. 265 00:16:45,938 --> 00:16:49,241 I was able to go to the White House with some folks from RAMPD. 266 00:16:49,274 --> 00:16:51,910 There have been a lot of terrific opportunities. 267 00:16:51,944 --> 00:16:54,713 So much of it is just community building. 268 00:16:54,747 --> 00:16:58,117 I'm hoping that in the coming years, we can build up even more on the side 269 00:16:58,117 --> 00:17:02,788 of people who are behind the line, 270 00:17:02,821 --> 00:17:05,991 academics, industry professionals, 271 00:17:06,025 --> 00:17:09,795 because I think right now there's a lot of burden on artists to run everything. 272 00:17:09,828 --> 00:17:13,232 That can be really tricky because they have tour schedules and their lives 273 00:17:13,265 --> 00:17:15,834 are just a little less predictable than those of us who are fortunate 274 00:17:15,834 --> 00:17:18,771 to have more or less a 9:00 to 5:00. 275 00:17:18,771 --> 00:17:21,874 I'd like to get a lot more of us represented there. 276 00:17:22,141 --> 00:17:28,747 Yes. And there is a new musicologist also right now who is also a performer, 277 00:17:28,781 --> 00:17:32,951 but it's nice to see that We are more and more to consider, Okay, 278 00:17:32,985 --> 00:17:38,257 let's join that and try to work on the connections and the community. 279 00:17:39,358 --> 00:17:40,392 Absolutely. 280 00:17:40,426 --> 00:17:42,928 I think a lot of folks end up feeling like they're alone. 281 00:17:42,961 --> 00:17:47,232 We're also pushed to speak on things 282 00:17:47,232 --> 00:17:50,636 as experts that we're not 100% experts in. 283 00:17:50,669 --> 00:17:53,806 This is something I've only been thinking about a lot in the past year. 284 00:17:53,839 --> 00:17:58,544 How often disabled folks go from diagnosis or realizing they're disabled 285 00:17:58,577 --> 00:18:03,015 or identifying as disabled to having to speak for the community and being treated 286 00:18:03,048 --> 00:18:04,917 as an expert on accessibility. 287 00:18:04,950 --> 00:18:08,420 And then all of the education you might lack while you're trying to do that, 288 00:18:08,420 --> 00:18:10,422 like you just kind of... 289 00:18:10,923 --> 00:18:13,725 Now I'm thinking about the fact that there are a ton of us. 290 00:18:13,759 --> 00:18:15,527 We can specialize. 291 00:18:15,561 --> 00:18:18,897 We can share opportunities around. 292 00:18:18,931 --> 00:18:23,735 We don't have to carry that alone because that pressure to be the ambassador 293 00:18:23,735 --> 00:18:27,306 for disabled musicians or disability in the arts or to say that, 294 00:18:27,306 --> 00:18:30,175 Yes, I can solve all of your accessibility in the arts. 295 00:18:30,175 --> 00:18:34,813 I mean, that's how questions, that's how we get burn out. 296 00:18:34,913 --> 00:18:39,151 Whereas RAMPD is increasingly, I think, and I hope, 297 00:18:39,151 --> 00:18:43,288 helping us see that no one of us has to be an expert on everything. 298 00:18:43,288 --> 00:18:45,824 We can work together, we can move together, where we can build 299 00:18:45,858 --> 00:18:48,760 the world that we want to see together. 300 00:18:48,794 --> 00:18:49,728 Yes. 301 00:18:49,761 --> 00:18:55,767 Recently, Lachi has organized a meeting to explain to pro members 302 00:18:55,801 --> 00:19:00,038 what is the social model of disability, 303 00:19:00,072 --> 00:19:05,811 what are - What is a possibility of 304 00:19:05,811 --> 00:19:08,247 talking about people with disabilities? 305 00:19:08,280 --> 00:19:14,219 What are things that we hear in our society all the time 306 00:19:14,219 --> 00:19:17,022 and that bother us, but why? 307 00:19:17,389 --> 00:19:19,892 It was a one-hour conversation. 308 00:19:19,925 --> 00:19:24,530 She presented things and then she launched the conversation. 309 00:19:24,530 --> 00:19:30,869 It was very nice to have that because, one, it's important. 310 00:19:30,903 --> 00:19:36,108 Two, some people who just joined the community and say, Okay, so I'm now 311 00:19:36,141 --> 00:19:42,247 part of the big family of musicians or performers with disabilities. 312 00:19:42,281 --> 00:19:44,383 Now what? 313 00:19:44,383 --> 00:19:50,289 Exactly. Just being disabled or being autistic doesn't mean that you know anything. 314 00:19:50,289 --> 00:19:53,025 I've been autistic my whole life. 315 00:19:53,058 --> 00:19:56,995 It took me a long time to really understand that. 316 00:19:57,029 --> 00:20:01,833 But even after getting a diagnosis, it's like, Okay, Go on your way. 317 00:20:01,833 --> 00:20:06,171 And of course, the person who diagnosed me, it was a horrible process. 318 00:20:06,905 --> 00:20:09,274 He just told me to go on the Autism Speaks website. 319 00:20:09,308 --> 00:20:10,976 That was the only resource he gave me. 320 00:20:11,009 --> 00:20:12,110 That was the only follow-up. 321 00:20:12,144 --> 00:20:14,947 And I was moving to France for a research year. 322 00:20:14,947 --> 00:20:18,116 To compound it further, I also ended up with an emergency surgery 323 00:20:18,116 --> 00:20:20,752 in Roanoke, Virginia, when I was visiting my brother. 324 00:20:20,786 --> 00:20:22,754 It was a nightmare time. 325 00:20:22,788 --> 00:20:25,824 But I'm just in France by myself, trying to do my archival work 326 00:20:25,857 --> 00:20:28,160 and function in a different language. 327 00:20:28,160 --> 00:20:29,328 And... 328 00:20:30,329 --> 00:20:32,864 Oh, yeah, you're also autistic. What on earth does that mean? 329 00:20:32,898 --> 00:20:38,036 It wasn't until I came back from France, and I joined a support group that 330 00:20:38,070 --> 00:20:42,174 I think it was supposed to be very much led by someone at our counseling center 331 00:20:42,207 --> 00:20:43,675 at the University of Michigan. 332 00:20:43,709 --> 00:20:47,512 But the autistics just took over every single week. 333 00:20:47,546 --> 00:20:49,881 She was so sweet. She's wonderful. 334 00:20:49,915 --> 00:20:53,752 She'd come in and she'd have a plan agenda, and she'd distribute poker chips 335 00:20:53,785 --> 00:20:54,987 that had a specific meaning. 336 00:20:55,020 --> 00:20:57,022 So we had some nonverbal communication. 337 00:20:57,055 --> 00:20:59,992 And then we would just do whatever we wanted to do every week. 338 00:21:00,025 --> 00:21:01,026 And she let us. 339 00:21:01,059 --> 00:21:02,294 She did let us guide it. 340 00:21:02,327 --> 00:21:05,263 So it turned more into, She has a plan if we don't have one, 341 00:21:05,297 --> 00:21:08,000 and then we just took off. 342 00:21:08,000 --> 00:21:11,370 But anyway, that's where I met a friend of mine named Luke Kudryashov, who's now 343 00:21:11,403 --> 00:21:14,806 at the University of Minnesota as an accessibility specialist. 344 00:21:14,840 --> 00:21:18,944 And Luke really brought me in and helped me understand 345 00:21:18,977 --> 00:21:23,148 how to survive as an autistic adult and what I was experiencing 346 00:21:23,181 --> 00:21:25,250 and connect me with community. 347 00:21:25,284 --> 00:21:29,988 I think when people are trying to learn more about disability, 348 00:21:29,988 --> 00:21:33,558 if you're on social media or you're looking at going to a presentation, 349 00:21:33,558 --> 00:21:36,962 there are some questions you have to ask yourself. 350 00:21:36,995 --> 00:21:40,165 All disabled people can speak about their own experience. 351 00:21:40,198 --> 00:21:41,033 That is true. 352 00:21:41,066 --> 00:21:43,702 But the minute we go beyond our own experience, you do have 353 00:21:43,735 --> 00:21:47,005 to wonder what our credentials are. 354 00:21:47,039 --> 00:21:49,975 And it's not just professional training. 355 00:21:50,008 --> 00:21:53,645 I could get a psychology degree, but that doesn't actually mean 356 00:21:53,645 --> 00:21:57,516 that I know much about mental health-related disabilities. 357 00:21:57,549 --> 00:22:02,521 The thing that I'm really interested in is who is in community with other people? 358 00:22:02,554 --> 00:22:05,524 Because either I'm speaking about my autistic experience 359 00:22:05,557 --> 00:22:08,827 or I am able to start pointing towards, You should read this person. 360 00:22:08,860 --> 00:22:10,429 This person says this. 361 00:22:10,462 --> 00:22:13,865 This is how it's different from what I hear to be autistic. 362 00:22:13,899 --> 00:22:17,569 And there are some great people who are Indigenous and autistic. 363 00:22:17,569 --> 00:22:20,205 I learned so much from them on social media. 364 00:22:20,238 --> 00:22:22,541 Folks who are Black and autistic. 365 00:22:22,574 --> 00:22:26,311 Autistic parents of autistic kids are some of my favorites in the universe 366 00:22:26,345 --> 00:22:30,515 because they just understand things much more holistically than the rest of us. 367 00:22:30,549 --> 00:22:34,786 So yeah, checking out and seeing, is this person in community with other people? 368 00:22:34,820 --> 00:22:38,457 Are they reading and referencing other stuff? 369 00:22:39,891 --> 00:22:43,729 It's funny because in one sense... Okay, yeah. 370 00:22:43,762 --> 00:22:45,330 Common sense. Of course, we know to do that. 371 00:22:45,330 --> 00:22:48,233 But on the other, we almost never do. 372 00:22:48,266 --> 00:22:50,235 It's really tricky. 373 00:22:50,235 --> 00:22:53,405 But yeah, that being in community part of RAMPD is really important. 374 00:22:53,438 --> 00:22:56,508 I think the fact that we're continuing to educate each other 375 00:22:56,508 --> 00:23:02,147 and learn about these things, yeah, that can only help. 376 00:23:02,180 --> 00:23:04,082 For sure. 377 00:23:04,116 --> 00:23:07,819 Well, we talked a little bit about that, but what is it for you, 378 00:23:07,819 --> 00:23:12,691 what does it mean for you to be in an environment that promotes accessibility 379 00:23:12,724 --> 00:23:16,161 in the arts or disability culture? 380 00:23:16,194 --> 00:23:19,831 The most important thing for me is if disabled people are in charge. 381 00:23:19,865 --> 00:23:23,535 I think I used to be a lot more forgiving about this, but now 382 00:23:23,535 --> 00:23:25,370 that is almost my bare minimum. 383 00:23:25,403 --> 00:23:29,841 My armor is up, and I almost assume that I'm not going to be included. 384 00:23:29,875 --> 00:23:33,111 If I see disabled people not just with a seat at the table, 385 00:23:33,145 --> 00:23:35,447 but a position of power. 386 00:23:35,480 --> 00:23:39,351 Because a seat at the table without power or agency is tokenism, 387 00:23:39,384 --> 00:23:44,389 as Leah Lakshmi Piepzna-Samarasinha tells us, in care work. 388 00:23:44,423 --> 00:23:46,758 I hope I didn't butcher that. 389 00:23:46,792 --> 00:23:48,693 I love them, so I apologize if I did. 390 00:23:48,727 --> 00:23:52,998 But that idea is definitely in there. 391 00:23:53,031 --> 00:23:57,135 Accessibility for me is not just being able to get into a space, it's being able 392 00:23:57,135 --> 00:24:01,239 to have agency and power in that space and being able to transform it. 393 00:24:01,239 --> 00:24:05,410 So are they advertising in advance what access they do have? 394 00:24:05,443 --> 00:24:08,914 And are they providing a way for you to ask about other access you need? 395 00:24:08,947 --> 00:24:11,149 I think that's really important to me. 396 00:24:11,183 --> 00:24:13,318 Disability culture is something that... 397 00:24:13,351 --> 00:24:17,355 I have a class called Disability Culture and the Arts that I teach every year. 398 00:24:17,389 --> 00:24:19,257 It's very, very important to me. 399 00:24:19,291 --> 00:24:23,929 When I say disability culture, it's important to know it's not a monolith. 400 00:24:23,962 --> 00:24:28,667 You're trying to talk about an aggregate knowing that every individual within it 401 00:24:28,700 --> 00:24:32,437 probably doesn't fit whatever definition you come up with, and that we have 402 00:24:32,471 --> 00:24:38,376 subcultures based on types of disability, but also on how disability intersects with 403 00:24:38,376 --> 00:24:41,680 things like race and gender, because 404 00:24:41,680 --> 00:24:45,383 although ableism, and sexism, and racism, transphobia, 405 00:24:45,417 --> 00:24:48,820 all of are interlocking and interdependent systems of oppression. 406 00:24:48,854 --> 00:24:50,856 They all reinforce each other. 407 00:24:50,889 --> 00:24:54,059 They all shape your experiences. 408 00:24:54,092 --> 00:24:57,496 The way I experience ableism as a white autistic woman is going to be 409 00:24:57,496 --> 00:25:03,635 different than a black trans autistic woman, for example. 410 00:25:04,102 --> 00:25:10,509 But disability culture, to me, it's about the things that we care about. 411 00:25:10,542 --> 00:25:12,410 It's about how we understand ourselves. 412 00:25:12,444 --> 00:25:15,881 In some sense, it's the language that we use. 413 00:25:15,914 --> 00:25:19,718 I think increasingly values associated with disability justice 414 00:25:19,718 --> 00:25:23,755 are playing a bigger and bigger role in how we understand disability culture. 415 00:25:23,755 --> 00:25:29,861 Not that everyone's informed on the topic, but a lot of things that are articulated 416 00:25:29,895 --> 00:25:34,900 in the principles of disability justice, like interdependence 417 00:25:34,900 --> 00:25:36,268 and intersectionality. 418 00:25:36,301 --> 00:25:40,405 A lot of these things come out of that culture that we've created. 419 00:25:40,438 --> 00:25:45,043 It tends to be a culture that prioritizes care and that understands 420 00:25:45,076 --> 00:25:49,748 the value value of everyone, no matter what they can and can't contribute. 421 00:25:49,915 --> 00:25:53,652 It's still a culture that's problematic and exclusionary because it exists 422 00:25:53,652 --> 00:25:55,954 in the framework of other cultures. 423 00:25:55,987 --> 00:25:59,824 But I think it's often at its best, 424 00:25:59,858 --> 00:26:04,863 it's a space of trust where you don't feel any shame 425 00:26:04,863 --> 00:26:10,535 for having needs and where people will help you get those needs met. 426 00:26:10,969 --> 00:26:15,273 I think a lot about fictional characters when I teach my students, in part 427 00:26:15,307 --> 00:26:19,744 because I don't want to call out real living human beings if I don't have to. 428 00:26:20,478 --> 00:26:23,415 I'm going to have to update my references, though, because they're already getting too old. 429 00:26:23,415 --> 00:26:28,119 But I think about in Parks and Rec, the character of Ron Swanson, who was 430 00:26:28,753 --> 00:26:32,324 cutting down a tree and making a he knew and paddling in himself, 431 00:26:32,357 --> 00:26:37,429 he still spent this tiny amount of money, like less than $50 a year buying clothes 432 00:26:37,462 --> 00:26:38,830 because he couldn't make clothes. 433 00:26:38,863 --> 00:26:41,166 He was still driving on roads other people had paved, 434 00:26:41,166 --> 00:26:42,734 even if he did sometimes step in 435 00:26:42,767 --> 00:26:44,803 and fix the potholes for folks. 436 00:26:44,836 --> 00:26:49,107 We all have needs, and it's fairly 437 00:26:49,140 --> 00:26:52,744 arbitrary which ones are acceptable 438 00:26:52,777 --> 00:26:57,782 and unacceptable on a social level, which ones get met and which ones don't. 439 00:26:57,816 --> 00:27:00,452 I think about the number of life skills that a lot of my friends 440 00:27:00,485 --> 00:27:06,591 with intellectual disabilities have and skills that oftentimes 441 00:27:06,625 --> 00:27:10,495 my non-disabled friends, especially my friends who are men, might not have. 442 00:27:10,495 --> 00:27:13,064 We expect people with intellectual disabilities to be able 443 00:27:13,098 --> 00:27:16,634 to cook and clean and take care of their own homes. But 444 00:27:16,634 --> 00:27:22,674 grown non-disabled men, that for some reason is not the same expectation all the time. 445 00:27:22,707 --> 00:27:28,313 I think disability culture is also about exposing that and about challenging that. 446 00:27:29,147 --> 00:27:31,149 Yeah. 447 00:27:31,883 --> 00:27:36,721 Yes. So, you mentioned you're 448 00:27:36,721 --> 00:27:39,457 teaching a class about disability culture, 449 00:27:39,457 --> 00:27:42,527 but you're also doing other projects. 450 00:27:42,560 --> 00:27:48,299 Can you talk about some of your projects or at least one that 451 00:27:48,299 --> 00:27:50,802 counts right now that you're doing? 452 00:27:50,835 --> 00:27:55,040 Yeah. I'll mention one briefly, and then a lot more detail about another. 453 00:27:55,073 --> 00:27:59,611 We're in the middle of putting together 454 00:27:59,611 --> 00:28:02,981 an alt text music notation working group. 455 00:28:02,981 --> 00:28:07,318 This is going to be really focused on European-American Western art music style 456 00:28:07,318 --> 00:28:13,692 notation at first, just because that's the source material and the team 457 00:28:13,692 --> 00:28:15,060 that I've been able to put together. 458 00:28:15,060 --> 00:28:20,198 I I had to pause everything while I bring my graduate student worker 459 00:28:20,198 --> 00:28:24,135 up to speed, getting accessibility certifications to help us 460 00:28:24,135 --> 00:28:26,237 make sure all the PDFs are accessible. 461 00:28:26,271 --> 00:28:30,975 But we're trying to devise a way to help 462 00:28:30,975 --> 00:28:33,445 blind folks access music notation 463 00:28:33,445 --> 00:28:38,917 apart from just Braille or just transcribing Braille, because there's some limitations with 464 00:28:38,917 --> 00:28:42,587 the current most popular systems of Braille music notation. 465 00:28:42,620 --> 00:28:45,056 So that's one thing that if you're interested in and you have time 466 00:28:45,056 --> 00:28:49,127 and energy to put into it, would love to hear from you. 467 00:28:49,160 --> 00:28:51,830 You can email me directly. I'm easy to find. 468 00:28:51,863 --> 00:28:57,235 One of my projects, though, that's quite different and has surprised me because 469 00:28:57,235 --> 00:29:02,040 was basically a footnote in a grant application, and now is 470 00:29:02,040 --> 00:29:07,078 causing me to write a lot of other grant applications, is called Open the Gates Gaming 471 00:29:07,445 --> 00:29:11,082 This is a project that grew out of a very local need. 472 00:29:11,116 --> 00:29:15,220 Here in Southwest Virginia, during the pandemic, we had a lot of disabled folks 473 00:29:15,220 --> 00:29:17,689 who wanted to play Dungeons & Dragons. 474 00:29:17,722 --> 00:29:22,527 Dungeons & Dragons is the most popular tabletop role-playing game in the world. 475 00:29:22,560 --> 00:29:23,795 It's not even close. 476 00:29:23,828 --> 00:29:27,832 It's a little embarrassing how much of the market share they have. 477 00:29:27,866 --> 00:29:33,338 But it exploded in popularity during the pandemic, again, thanks to being shown 478 00:29:33,371 --> 00:29:38,510 on television, like with Stranger Things on Netflix, or 479 00:29:38,510 --> 00:29:42,981 the fact that you could play it on Zoom, so you didn't have to be in the same room to play. 480 00:29:43,014 --> 00:29:47,018 And there were all these digital tools being created like D&D Beyond 481 00:29:47,018 --> 00:29:52,257 and stuff like that that helped people play it online and helped get players going. 482 00:29:52,257 --> 00:29:57,228 But it's also a system that has a huge cognitive load. 483 00:29:57,228 --> 00:30:02,534 It's, unfortunately, a subculture that historically has been quite exclusive. 484 00:30:02,534 --> 00:30:06,337 I know as a woman, I didn't get into this hobby for a long time because 485 00:30:06,371 --> 00:30:09,641 if I had to go to a gaming store and play with strange men, 486 00:30:09,641 --> 00:30:15,647 I was often just subjected to a lot of sexism or shady behavior, and I wasn't included. 487 00:30:15,680 --> 00:30:19,517 I think people of color have experienced much worse here. 488 00:30:20,051 --> 00:30:23,454 But it also has a lot of progressive, 489 00:30:23,454 --> 00:30:25,890 radically inclusive potential. 490 00:30:25,890 --> 00:30:29,260 There's no reason that we can't all play together. 491 00:30:29,260 --> 00:30:32,864 It's a game that develops a lot of empathy because you're creating a character 492 00:30:32,897 --> 00:30:37,635 and stepping into their shoes for hours, but sometimes years, if not decades. 493 00:30:37,669 --> 00:30:39,704 There are games that have been going on for decades, 494 00:30:39,704 --> 00:30:43,074 which is wild to think about. 495 00:30:44,075 --> 00:30:48,279 The local disability community wanted to play, and they didn't just want us 496 00:30:48,279 --> 00:30:51,849 to create a separate set of roles so they could play by themselves 497 00:30:51,849 --> 00:30:55,720 or to play different games because there are other games like D&D 498 00:30:55,720 --> 00:30:59,123 that are much more cognitively accessible. 499 00:30:59,157 --> 00:31:00,892 Kids on Bikes is wonderful. 500 00:31:00,892 --> 00:31:04,028 There's a lot of great systems out there, but they wanted to play this one, and 501 00:31:04,062 --> 00:31:05,797 they wanted to play it with everybody. 502 00:31:05,830 --> 00:31:09,767 They didn't want a segregated table. They wanted an integrated table. 503 00:31:09,801 --> 00:31:13,538 We started developing cognitive access tools to help bridge that gap, 504 00:31:13,538 --> 00:31:18,643 initially with a decision guide because after you sit around a table 505 00:31:18,643 --> 00:31:22,847 and after the world is explained to you, 506 00:31:22,847 --> 00:31:25,950 the person running the game will look at you and say, What do you want to do? 507 00:31:25,984 --> 00:31:27,719 And you can do anything. 508 00:31:27,752 --> 00:31:30,054 You can say that you want to jump off of a cliff. 509 00:31:30,054 --> 00:31:33,124 You can say that you want to open a pottery studio. 510 00:31:33,157 --> 00:31:35,894 You can try to seduce a goblin. 511 00:31:35,894 --> 00:31:38,730 Anything you can try to do in this game. 512 00:31:38,763 --> 00:31:42,033 But that by itself can actually become an obstacle. 513 00:31:42,066 --> 00:31:45,470 So our decision guide was just prompting players. 514 00:31:45,503 --> 00:31:47,538 Here are questions you can ask or things you can think about 515 00:31:47,572 --> 00:31:50,541 to help focus them in. 516 00:31:50,909 --> 00:31:54,679 We also created spell cards because the magic system is really complicated. 517 00:31:54,679 --> 00:31:58,716 So we created easier reference spell cards in larger print that had information 518 00:31:58,716 --> 00:32:02,287 presented in a standardized way. 519 00:32:02,320 --> 00:32:08,526 And we made a class selector, a tool that helps you build your character 520 00:32:08,559 --> 00:32:11,195 because building the character is often enough to scare people off. 521 00:32:11,229 --> 00:32:16,167 It's a huge, complex process with books that have hundreds of pages. 522 00:32:16,200 --> 00:32:20,271 So we tried to simplify that and make it storytelling from the beginning. 523 00:32:20,305 --> 00:32:25,143 It was so exciting for people that the demand for what 524 00:32:25,176 --> 00:32:26,844 we were doing skyrocketed. 525 00:32:26,878 --> 00:32:29,013 And once we started trying to implement these three tools, 526 00:32:29,047 --> 00:32:30,715 we realized we needed other stuff. 527 00:32:30,748 --> 00:32:34,285 Now we're making videos that explain concepts in 528 00:32:34,285 --> 00:32:36,954 social media length, 90 seconds or less. 529 00:32:36,988 --> 00:32:40,658 Here's what the concept is, and here's an example of people actually 530 00:32:40,692 --> 00:32:42,994 playing with that concept. 531 00:32:43,027 --> 00:32:47,332 They're multiple actors at a table with the dice, with all the things. 532 00:32:47,332 --> 00:32:50,201 We also have a sample adventure now, so you'll be able 533 00:32:50,201 --> 00:32:53,705 to watch an entire session, so you know what to expect before you go 534 00:32:53,738 --> 00:32:56,174 if you really want to do this. 535 00:32:56,774 --> 00:33:00,278 We have ability cards, and we also have character sheets. 536 00:33:00,311 --> 00:33:05,616 Our group eventually coalesced a couple of years ago around 537 00:33:05,650 --> 00:33:09,454 this name, Open the Gates Gaming, because there's another side of it 538 00:33:09,487 --> 00:33:12,357 that is creating more inclusive stories. 539 00:33:12,390 --> 00:33:18,396 It's not just this fantasy realm built around around what European cis-het, 540 00:33:18,429 --> 00:33:20,798 able-bodied white men would want. 541 00:33:20,832 --> 00:33:25,203 We're trying to open up other stories, like other realms of storytelling, other possibilities 542 00:33:25,203 --> 00:33:29,941 around disability and race and gender and sexual orientation. 543 00:33:30,641 --> 00:33:33,778 An idea for us is that play is a human right, and yet 544 00:33:33,778 --> 00:33:36,080 it's something that's denied to a lot of people. 545 00:33:36,114 --> 00:33:39,784 We believe that everyone is a storyteller, but not everyone is having the chance 546 00:33:39,817 --> 00:33:44,756 to tell their stories, that systems need to be flexible to be accessible. 547 00:33:44,789 --> 00:33:50,261 We're pulling that all together to then create these open access tools. 548 00:33:50,261 --> 00:33:53,331 We are in the last stages of prototype development. 549 00:33:53,364 --> 00:33:57,835 We'll be doing play testing in early 2025, and everyone that comes and play tests with us 550 00:33:57,835 --> 00:34:01,239 gets free custom dice that have our logo on them. 551 00:34:01,239 --> 00:34:03,107 They're very cute. 552 00:34:03,107 --> 00:34:05,376 But this will all be open access. 553 00:34:05,410 --> 00:34:08,880 We have a website, openthegatesgaming.org. 554 00:34:08,913 --> 00:34:12,617 If you mess up and say, openthegatesgaming.com, it will redirect you. 555 00:34:12,617 --> 00:34:14,819 So just minimal pressure there. 556 00:34:14,819 --> 00:34:18,456 And we're on social media, although we're just slowly building those channels. 557 00:34:18,456 --> 00:34:20,892 So we'll be releasing stuff as it's ready. 558 00:34:20,925 --> 00:34:24,595 Currently, it's all 2014 rules because that's the set we can work with 559 00:34:24,595 --> 00:34:29,801 where the free rules are published and on a Creative Commons license, 560 00:34:29,801 --> 00:34:34,939 and we won't upset anybody at Hasbro or Wizards of the Ghost. 561 00:34:34,939 --> 00:34:38,109 But it's been a really cool project because I've been able 562 00:34:38,142 --> 00:34:41,913 to see that cognitive accessibility crosses so many barriers. 563 00:34:41,946 --> 00:34:45,016 I mean, one of our most popular demographics now is parents, 564 00:34:45,016 --> 00:34:48,686 people who don't get a lot of I am off in a way to just 565 00:34:48,686 --> 00:34:50,988 be separate from the kids and do something fun. 566 00:34:51,022 --> 00:34:54,859 So they don't want to spend the whole night just learning some rules. 567 00:34:54,892 --> 00:34:56,494 They want to get in and play. 568 00:34:56,494 --> 00:35:01,499 But we're also seeing a rise in a need for this, even from experienced players 569 00:35:01,499 --> 00:35:07,271 after COVID, because long COVID often has a lot of neurological manifestations. 570 00:35:07,305 --> 00:35:11,476 So we've got things for experienced players and new players, and we have 571 00:35:11,476 --> 00:35:17,315 a commitment that it is always going to be open access, free for everyone to use. 572 00:35:17,748 --> 00:35:19,550 Our team... 573 00:35:19,550 --> 00:35:22,954 Everyone in our team has a reason why they would not have been able to 574 00:35:22,954 --> 00:35:26,791 get past the gatekeeping, but we've all been able to leverage some aspect 575 00:35:26,824 --> 00:35:28,960 of our privilege enough to get inside. 576 00:35:28,993 --> 00:35:33,865 So now we're trying to kick Open the Gates from the inside to let everybody in. 577 00:35:34,465 --> 00:35:36,567 Wow, it's a fascinating project. 578 00:35:36,601 --> 00:35:39,637 Yeah, it's a lot. 579 00:35:39,670 --> 00:35:41,172 It's not where I thought I was going to be. 580 00:35:41,205 --> 00:35:46,043 I never thought I was going to be doing this, but it's really, really cool. 581 00:35:46,077 --> 00:35:51,516 We will share all these links on ArtsAbly so that people can have a look. 582 00:35:51,549 --> 00:35:52,617 It's great. 583 00:35:52,650 --> 00:35:56,654 I also read somewhere that if we want to challenge you with another game, 584 00:35:56,687 --> 00:36:01,292 which is the Star Wars game, if we fight with you, we will lose. 585 00:36:01,325 --> 00:36:02,693 Is that right? 586 00:36:02,693 --> 00:36:04,161 Probably. I don't know. 587 00:36:04,161 --> 00:36:08,833 I mean, there are some people that get really into the mechanics of the ships 588 00:36:08,866 --> 00:36:10,701 that will lose me for a second. 589 00:36:10,735 --> 00:36:18,009 But I have been a deeply devoted Star Wars fan from my earliest memories. 590 00:36:18,042 --> 00:36:20,478 I love Star Wars. 591 00:36:20,478 --> 00:36:23,114 In fact, the very first tabletop role-playing game 592 00:36:23,147 --> 00:36:24,382 I played was a Star Wars one. 593 00:36:24,415 --> 00:36:29,353 It was the Fantasy Flight Edge of the Empire. 594 00:36:29,387 --> 00:36:31,188 Yeah, Star Wars is the best. 595 00:36:31,188 --> 00:36:33,791 And I am one of those people... I love The Last Jedi. 596 00:36:33,824 --> 00:36:38,029 This is going to get you hate, but that's engagement, right? 597 00:36:38,062 --> 00:36:41,199 The Last Jedi is one of the best Star Wars movies ever made, 598 00:36:41,199 --> 00:36:43,401 and I think people are going to get there. 599 00:36:43,434 --> 00:36:46,170 You got to remember, people hated Empire Strakes back when 600 00:36:46,170 --> 00:36:49,473 and now it's universally held up as one of, if not the best. 601 00:36:49,507 --> 00:36:51,208 I think The Last Jedi is the same way. 602 00:36:51,242 --> 00:36:55,112 People were disappointed because they had ideas of what it should be, 603 00:36:55,146 --> 00:36:56,380 and it wasn't those things. 604 00:36:56,414 --> 00:37:03,020 But I love Star Wars and this age of Star Wars storytelling we're getting in. 605 00:37:03,054 --> 00:37:07,158 That's far more inclusive, far more people's stories. 606 00:37:07,158 --> 00:37:12,129 It's not just Joseph Campbell's monolith anymore. 607 00:37:12,597 --> 00:37:15,066 Yeah, it's a really exciting time. 608 00:37:15,066 --> 00:37:18,035 Fortunately, we learn a lot from the Andor show. 609 00:37:18,035 --> 00:37:21,572 That's all I'm going to say a week after the election. 610 00:37:21,606 --> 00:37:23,007 Sorry, I didn't get that. 611 00:37:23,040 --> 00:37:28,312 The Andor show, it's from the early days of the Rebellion. 612 00:37:28,512 --> 00:37:30,982 It's got some of the best acting, writing, directing. 613 00:37:31,015 --> 00:37:34,352 Even if you don't know anything about Star Wars, it's on Disney+, 614 00:37:34,385 --> 00:37:37,888 but Andor is a good one to watch. 615 00:37:37,922 --> 00:37:39,590 It's intense, though. 616 00:37:39,624 --> 00:37:41,659 It's the most intense of any of them. 617 00:37:41,692 --> 00:37:47,264 It's the only one I don't have my niece's nephew's watch right now. 618 00:37:47,698 --> 00:37:51,802 But whoever, somebody behind the scenes did their work 619 00:37:51,836 --> 00:37:54,238 on what resistance movements are like. 620 00:37:54,271 --> 00:37:58,342 As somebody who wrote a dissertation set in 1930s France and was following 621 00:37:58,376 --> 00:38:04,315 some people's stories into the '40s, it's intense. 622 00:38:04,649 --> 00:38:07,118 Well, I have a last question for you. 623 00:38:07,918 --> 00:38:12,156 Apart from George Lucas, who were 624 00:38:12,156 --> 00:38:16,694 the people who really motivated you 625 00:38:16,727 --> 00:38:19,530 to work in your field right now? 626 00:38:19,563 --> 00:38:24,135 If you had some people to think of who really counted in your career, 627 00:38:24,168 --> 00:38:25,936 who would it be and why? 628 00:38:25,936 --> 00:38:28,706 I think there's a lot of folks that I could name here. 629 00:38:28,739 --> 00:38:32,276 The big caveat is this is what's popping in my head in this moment. 630 00:38:32,276 --> 00:38:36,947 And if I don't mention you, it's just because my brain 631 00:38:36,981 --> 00:38:39,884 is not great on the spot sometimes. 632 00:38:40,351 --> 00:38:44,155 I think about the fact that I would not have the job I have 633 00:38:44,188 --> 00:38:47,158 or be doing what I'm doing if it wasn't for Andrew Dell’Antonio. 634 00:38:47,158 --> 00:38:49,794 I know he's been on your show before. 635 00:38:49,827 --> 00:38:52,630 He tends to undersell the role that he has in our community because it's 636 00:38:52,663 --> 00:38:55,833 one that's a little hard to put on CVs. 637 00:38:55,866 --> 00:39:00,171 But when I first started needing to use a cane all the time, 638 00:39:00,171 --> 00:39:01,405 I've got my cane today. 639 00:39:01,405 --> 00:39:07,244 Normally, I've got a rollator or crutches, whatever my body wants to do that day. 640 00:39:07,278 --> 00:39:12,650 But when I first needed to use a cane and I realized that I couldn't 641 00:39:12,650 --> 00:39:17,088 hide my disabilities anymore, I experienced a lot of ableism in graduate school. 642 00:39:17,121 --> 00:39:19,824 I'm still processing that. 643 00:39:20,991 --> 00:39:24,662 There are news articles about some of my professors in graduate school. 644 00:39:24,695 --> 00:39:25,830 I'll leave it there. 645 00:39:25,863 --> 00:39:27,965 But I experienced a lot. 646 00:39:27,998 --> 00:39:30,835 When I realized I couldn't hide it anymore, 647 00:39:30,835 --> 00:39:33,871 then the question came up of, What do you want to say? 648 00:39:33,904 --> 00:39:39,610 As an autistic person, I have a hard time lying or even telling half-truths. 649 00:39:39,643 --> 00:39:42,346 It's all or nothing with me, usually. 650 00:39:42,913 --> 00:39:49,186 But I also didn't know what the implications would be. 651 00:39:49,220 --> 00:39:52,823 I reached out to Andrew Dell’Antonio because I noticed that he was 652 00:39:52,823 --> 00:39:56,627 also friends with Amy Sequenzia, who's an incredibly important 653 00:39:56,660 --> 00:39:59,096 non-speaking autistic person. 654 00:39:59,730 --> 00:40:01,665 Amy's work is so, so important. 655 00:40:01,699 --> 00:40:03,367 I cannot emphasize that enough. 656 00:40:03,400 --> 00:40:04,535 But I thought that was odd. 657 00:40:04,568 --> 00:40:05,703 I'm like, There's a musicologist here. 658 00:40:05,736 --> 00:40:07,338 What is going on? 659 00:40:07,338 --> 00:40:09,540 I reached out to Andrew, and he met up with me. 660 00:40:09,573 --> 00:40:12,877 I think it was AMS in Rochester. 661 00:40:12,910 --> 00:40:18,315 I was on medical leave, but I was with family in upstate New York, so I went. 662 00:40:18,349 --> 00:40:24,455 And not only did he introduce me to a network of neurodivergent academics, 663 00:40:24,455 --> 00:40:28,159 so not just autistics, but also people with ADHD, other things, 664 00:40:28,192 --> 00:40:32,096 many of whom are not out publicly or They're out about other identities, 665 00:40:32,129 --> 00:40:36,033 so they can't take the hit for being out about everything. 666 00:40:36,066 --> 00:40:40,738 Me being out as an autistic person is rough. 667 00:40:42,873 --> 00:40:45,976 I don't want people to ever come out because they think that they should. 668 00:40:45,976 --> 00:40:47,211 You don't owe anyone anything. 669 00:40:47,244 --> 00:40:49,914 Your safety and well-being is the most important. 670 00:40:49,947 --> 00:40:53,350 I can be out because I'm a white, cis-het woman. 671 00:40:53,384 --> 00:40:57,955 That's why I can be out. I had some privilege to leverage. 672 00:40:57,988 --> 00:41:02,526 But anyway, Andrew introduced me to a lot of people who told me the truth. 673 00:41:02,560 --> 00:41:05,729 I learned the good, the bad, the ugly. 674 00:41:05,729 --> 00:41:10,100 I was pretty prepared, I will say, when I made the decision to be open 675 00:41:10,134 --> 00:41:12,069 about this and to do this work. 676 00:41:12,102 --> 00:41:15,339 Because to me, it's also really important that if you're doing disability work, 677 00:41:15,339 --> 00:41:18,843 you don't need to share everything about yourself, but you do need to share 678 00:41:18,843 --> 00:41:22,279 your relationship to the community, because that's an important way 679 00:41:22,313 --> 00:41:24,915 for us to understand and evaluate what you're saying. 680 00:41:24,915 --> 00:41:28,519 It's just a really important piece of the puzzle. 681 00:41:28,552 --> 00:41:30,988 Andrew helped me think through all of those things 682 00:41:31,021 --> 00:41:33,157 for a very long period of time. 683 00:41:33,190 --> 00:41:39,663 And without him, I either wouldn't have been out and working in disability, 684 00:41:39,697 --> 00:41:42,433 or I might have done it very wrong. 685 00:41:42,466 --> 00:41:44,835 It might have been more dangerous. I wouldn't have been prepared. 686 00:41:44,835 --> 00:41:46,670 I wouldn't have felt like I had a network. 687 00:41:46,670 --> 00:41:50,107 And to this day, he's still just an incredibly essential part 688 00:41:50,140 --> 00:41:52,977 of my support system, and I'm very, very grateful for him. 689 00:41:52,977 --> 00:41:56,680 And his work also helps me understand what I wanted to do 690 00:41:56,714 --> 00:41:58,015 with pedagogy in the classroom. 691 00:41:58,048 --> 00:42:01,919 He's been very encouraging of a lot of my adventures. 692 00:42:02,419 --> 00:42:04,955 I did make him play D&D at least once. 693 00:42:05,289 --> 00:42:08,492 He played when he was a kid, but I brought it back. 694 00:42:08,859 --> 00:42:14,064 I think that it's hard to underestimate how important that was. 695 00:42:15,099 --> 00:42:20,137 I think about everyone who has been or is in Disability Culture 696 00:42:20,170 --> 00:42:21,939 at the University of Michigan. 697 00:42:21,939 --> 00:42:24,141 This is an organization that, kind of like RAMPD, 698 00:42:24,141 --> 00:42:28,913 I wasn't in it at the very beginning, but I was there very near the beginning. 699 00:42:29,847 --> 00:42:35,419 There are so many folks at DC@U-M, Luke Kudryashov, 700 00:42:35,419 --> 00:42:39,690 Jeffrey Edelstein, Ashley Wiseman, 701 00:42:39,690 --> 00:42:42,960 Solomon Furious Worlds, best name ever. 702 00:42:42,993 --> 00:42:46,497 Just so many people that I met through that organization 703 00:42:46,530 --> 00:42:48,232 and working together who taught me. 704 00:42:48,265 --> 00:42:51,635 The first time I learned what disability justice was, it was from them. 705 00:42:51,669 --> 00:42:55,439 The first time I learned to be comfortable explaining my access needs or what 706 00:42:55,439 --> 00:43:01,645 access intimacy was, it was them, and their fantastic Halloween parties. 707 00:43:01,679 --> 00:43:05,349 That was really, really important. 708 00:43:05,382 --> 00:43:09,553 Even today, folks like Ashley Shew, for example, here at Virginia Tech, 709 00:43:09,586 --> 00:43:13,490 I don't know that I would have lasted without her. 710 00:43:14,692 --> 00:43:18,696 I had long phone call with her this morning, and I'm sure 711 00:43:18,729 --> 00:43:19,997 we'll be texting all day. 712 00:43:19,997 --> 00:43:26,236 She is marvelous, and I owe her a lot. 713 00:43:26,270 --> 00:43:29,573 I think I wouldn't have gotten involved with RAMPD, if not for Gaelynn Lea. 714 00:43:29,606 --> 00:43:31,875 The first time I called her, I was so star struck. 715 00:43:31,875 --> 00:43:34,778 I was trying to book her for an event. 716 00:43:34,778 --> 00:43:37,181 It's adorable to think about because now 717 00:43:37,181 --> 00:43:39,817 she's one of my first calls after the election. 718 00:43:39,817 --> 00:43:45,055 Now it feels like we're comrades in arms, but back then I was terrified of her. 719 00:43:45,055 --> 00:43:48,626 Yeah, there's so many folks. 720 00:43:48,659 --> 00:43:53,931 And I love that I've gotten to a point where - My Open the Gates Gaming team, 721 00:43:53,964 --> 00:43:59,336 I joked to one of my student workers who is neurodivergent that 722 00:43:59,336 --> 00:44:01,538 every one of my team is neurodivergent. 723 00:44:01,538 --> 00:44:03,941 They just don't all know it yet. 724 00:44:03,941 --> 00:44:06,477 And then it became a game of trying to spot who knew it. 725 00:44:06,510 --> 00:44:08,278 That's probably a bit of an exaggeration. 726 00:44:08,278 --> 00:44:15,853 But the fact that I have so many people who are different than me, but just 727 00:44:17,121 --> 00:44:20,391 believe me if I need something, and then they're there for it, 728 00:44:20,391 --> 00:44:22,993 that think about my access needs in advance. 729 00:44:23,027 --> 00:44:25,996 I remember the first time I walked into a room and they turned off the lights 730 00:44:25,996 --> 00:44:29,400 that sometimes set off my migraine, and I didn't even know that they knew that. 731 00:44:29,400 --> 00:44:33,470 Just all the little things, like the fact that I have 732 00:44:33,504 --> 00:44:35,372 chosen family that will be there. 733 00:44:35,406 --> 00:44:39,276 It's just remarkable. 734 00:44:39,877 --> 00:44:41,145 Yeah. 735 00:44:41,145 --> 00:44:45,916 I should stop naming people because I'm only going to miss more and more of them. 736 00:44:46,784 --> 00:44:49,920 Well, thank you so much for this time together. 737 00:44:49,920 --> 00:44:52,690 It was a great conversation. 738 00:44:52,723 --> 00:44:59,263 I'm sure we're going to see each other in another - one project or another. 739 00:44:59,296 --> 00:45:00,631 I hope so. 740 00:45:00,664 --> 00:45:04,668 I'm so excited that you're doing this because I think ArtsAbly is really 741 00:45:04,702 --> 00:45:09,640 helping connect people and fill this gap that everybody has talked about, 742 00:45:09,673 --> 00:45:10,908 but nobody's done something about. 743 00:45:10,941 --> 00:45:14,078 I'm really glad that you're doing it. 744 00:45:14,111 --> 00:45:16,713 Thank you for the opportunity and your persistence. 745 00:45:16,747 --> 00:45:21,018 Even as my schedule just kept saying no, I'm glad that you kept saying yes, 746 00:45:21,018 --> 00:45:22,653 so we can make it work. 747 00:45:22,686 --> 00:45:24,221 Thank you. 748 00:45:24,221 --> 00:45:28,125 Yeah, have a great day and talk soon. 749 00:45:28,158 --> 00:45:29,626 Awesome. Thank you. Bye. 750 00:45:29,726 --> 00:45:30,360 Bye. 751 00:45:31,762 --> 00:45:36,900 ♪ Closing theme music ♪