The Access Radio Hour blends music by disabled artists and conversations about disability at Emerson. Hosted by Access: Student Disability Union's Vice President for Community, Greyson Acquaviva, this accessible radio show brings disability to WECB every Friday from 2-3pm EST.
The audio of this interview can be found here.
Greyson:
We are going to be doing the interview segment of this radio show. I am your host, Greyson Acquaviva and we have my co-host, Harper Mackenzie. How are you doing today?
Harper:
I'm good. Thanks for having me back on as a co-host.
Greyson:
No problem. Always happy to have you. And today's interviewee is Alex Pyne. How are you doing?
Alex:
I'm doing pretty well today. It's snowing, and I'm loving that. It's so cozy. And yeah, I love the snow.
Greyson:
Nice. Well, if you could tell me a little bit about yourself, that'd be great. Like, who are you?
Alex:
Uh, just, not getting too deep with that question. I'm a sophomore at Emerson, I have an IDIP major, which is a fancy way of saying interdisciplinary studies or like self-designed major. I study— I think the degree is called “The Politics of Culture and Media.” So, how mass media and popular culture can function in political ways or have political messaging embedded inside of them. And, you know, how that functions in our broader economy of creating different kinds of either conservative or liberal cultures or, you know, making certain views more pervasive. At heart, I'm a pretty happy go lucky person. And I'm also disabled. Which is why I’m here,
Greyson:
Yes, of course!
Harper:
Yeah, it always comes down to that in the end, doesn't it, here on The Access Radio Hour? But yeah, so you're a member of Access. So, could you speak a little bit to like, kind of how and why you got involved with Access? All that kind of stuff?
Alex:
Yeah, sure thing, I'd love to. Um, I'll start with why first, because I think not that that's more important, but I think probably more interesting. Basically, the— at Emerson we have lots of different orgs dedicated to very important identities like race, class, gender, and nothing really for ability. Which is strange, because like the issue of access and disability both come up a lot on campus. Like, I could tell you, a number of times when professors have been asked in class by students to make simple accommodations either by students— like not say simple words that kind of then make them— that cause them to then tick or then to like, or that are triggering, or, you know, things like that. And, or, like the times when I've, you know, been kind of teased for, you know, not being able to read fast enough, or really simple thing sometimes. And then other times larger issues, like I know, personally, I had last semester, to like schedule my entire, like weeks around the fact that I used to do weekly infusions. And that was something that not many people understood are like, why or how, you know, the importance of it. And so I think, and on top of that, like, since there are so many disabled students on campus, we also need like, certain resources, like housing accommodations, and, you know, accommodations in classes, like I just mentioned. And so, having a specific organization that's dedicated to both educating non-disabled people on the importance of accommodations on like, what certain disabilities are, you know, how to be more accommodating, things like that. And also, you know, a source of collective power that can then provide resources to disabled students I think is really important to kind of fill in that gap that exists at Emerson. And then as for how I joined, it was over the summer because speaking of housing accommodations, I wasn't getting one that I needed. Because I had a concussion back in January of this year when I was supposed to have been applying for the housing accommodation. But, you know, both as a freshman and as a person with a concussion and like underlying immune disorders that can get flared by concussions, I was not focused on, you know, applying for a housing accommodation, especially since, like, I didn't know that the deadline was coming up. And the lack of forethought on “Oh, this person is dealing with these different disabilities at the moment. Maybe we should just tell him when the deadline for this thing is so that way he doesn't miss it” never seemed to have come up in the minds of Student Accessibility Services. And so, I mostly was just asking Harper for help. And advice and also complaining a lot.
Harper:
You know, that's what—
Alex
Which I really appreciate. You listened. It helped me feel sane.
Harper:
It great. I mean, that's what the Access Instagram DMs are for. Like, just to, like, reach out, and, you know. I think you're one of my favorite like joining stories, because yeah, you just joined like, over the summer in Instagram DMs. I was like, “Cool. Welcome. You’re one of us.” So yeah, a lot of really good stuff in that in that answer.
Greyson:
Yeah, you did.
Alex:
Yeah. Thanks a lot.
Greyson:
What has been your experience here at Emerson College as a person with disabilities?
Alex:
So, I've had a bit of a mixed experience at Emerson. Um, I think that part, like— I think the worst experience I've had, can be chalked up to, you know, not getting the accommodation I need. And honestly, like, I probably could have gotten away with not getting it or like not getting, or getting what they had offered me instead had the pandemic not been a thing. Since I am immune-compromised, like, I really needed it as a standalone room, rather than a single in a suite. And, like, under normal circumstances, that might have been fine. I'm not really sure. Um, so my experience has been I somewhat okay. Like, I would have loved if the deadlines for things were, like, more publicized. And, um, if, you know, certain, at certain times, like, your own personal disabilities were taken into account when SAS deals with you. Because in my case, it seems to be, it seemed to me, like, the way that people can be dealt with, and this is what I've heard from others, is that you'll get like a very friendly face at first, and then they'll kind of walk you through what you need. But the moment like you ask to be treated according to like, what you need based on your disability, in terms of like, logistics of getting what you need, then it's a very different story, or, like, then they begin to gatekeep. I've experienced some of the gatekeeping and that looks like you know, requiring a lot of medical documentation or— which is also like a class issue. Like, you know, if there are disabled students of color Emerson, they might not be able to afford like the same amount of the medical care. And, and also, like, it's a race issue. And also, I've been told that, like, sometimes the experience at Emerson is a gendered issue. So, like, when dealing with my case manager, I've had a perfectly like, okay, experience, but that's also because, you know, I present like a masculine person. Whereas I think that, or I've been told, that sometimes women with disabilities sometimes get more condescended to or more easily dismissed by SAS. So, um, yeah, I think my experience probably is more positive because I'm a wealthy white man, maybe. And I don't think that my experience with SAS speaks to everyones. Yeah, sorry, that was a long answer.
Harper and Greyson:
No!
Greyson:
It's fine.
Harper:
It's a good long answer. There's a lot. There's a lot in there. Um, yeah, I mean, our next question was, “What are your experiences with SAS?”
Alex:
*Laughs*
Harper:
Like, I feel like you kind of—
Alex:
I kind of—I took that to be like, my experience at Emerson as a person with disabilities is kind of like, chalked up to my experience with SAS.
Greyson:
Um, yeah, didn’t think about that when I wrote that.
Harper
Yeah. No, I think—
Alex:
It's more— Like, I, I think also, since I have more immune disabilities like, and, like, some mood disorders, I am able to mask my disability is a lot easier than I think some other people at Emerson are, which can be both a good thing and a bad thing. It kind of, you know, I think sometimes I do feed into the, you know, super crip myth, where, like, I may be pushed myself to my limit, because I feel that I have to or should because, you know, Emerson can be a bit of an overachieving place, in terms of organizations and things like that. Um, yeah.
Harper:
You’re speaking my language here.
Alex:
Yeah, you know what I’m sayin’?
Greyson
Yeah, I totally agree with you.
Alex:
Yeah. And so—
Greyson:
And another thing—
Alex:
Oh, sorry.
Greyson:
I was just saying another thing that's really interesting is as a person with disabilities who also has an immune system problem, I've definitely had my own share of experiences with SAS and getting accommodations that would make it so that I would be more safe in terms of being— like not contracting the coronavirus. So that's definitely been a struggle, but also a blessing because I've, I've been able to work with them fine.
Alex:
Mm hmm.
Greyson:
And I've been able to work with them really well, but I can't say for others, and I hope everybody's treated fairly and all that. And I, I don't know. I mean, please, if anybody has anything to say to that, or if anybody ever has anything to say to that, please comment on it and bring it up. Because it's important that everybody's experiences are similar and that everybody's experiences are treated fairly. You know, equally. Yeah, it's a shame because like, I hadn't even considered that. And this also speaks to, you know, my naivety and like, my privilege, but like, I hadn't even considered that people would be having different experiences until I had been told by my friends that they were, you know.
Greyson:
Yeah. And sometimes it takes that moment of realization, where like, “oh, maybe you need a friend to tell you that to realize that” or, and it's, and it's totally cool. So, I want to talk a little bit about your major. You have a pretty unique major,
Alex:
Oh yeah.
Greyson:
not a lot of IDIP majors. And I know Harper, you are one.
Harper:
Yeah, it’s so funny. I’m just sitting her on this and thinking, like, “Okay, we're three remote students with disabilities, two of which are IDIPs.” Like, what are the, what are the chances?
Greyson:
Yeah, what are we odd? But you have unique major, and I would love to know a little bit more about it, and how your disability might play into that kind of field of study. Could you tell us a little more about that?
Alex:
Um, yeah. I mean, like, the, the way in which disabled bodies are like politicized or, or not, it is a pertinent issue with like within portrayals of disabled people in the media. I know, at a recent meeting of Access we talked about disability representation. And, like, that kind of analysis is what I'm hoping to do with my major as I continue at Emerson. Like I don't have any specific course requirements that are geared specifically towards disability. I think that speaks partly to like the fact that Emerson only has, as far as I know, one course, on disability in the media. And it's like CD 100-something.
Harper:
153.
Alex:
Thank you. And I think everybody should take it. I mean, I'm, I'm gonna try to at some point. But yeah. The way that disabled bodies are, like, represented and portrayed in the media is a political issue, like, because it affects 1.) like, how the public perceives us and like, whether or not we're deserving of health care, or like, how the public decides to treat us, you know?
Greyson:
Yeah, you’re totally right.
Alex:
Yeah, I think that it's a lot easier to see in instances of like, autistic representation because there's like, a bit of a fetishization of autistic people, like, especially in sitcoms, with—
Greyson:
Oh, yeah.
Alex:
It's kind of interesting, um, that, like, that's the specific disorder, or, you know? But also, you know, I'm speaking to my personal experience, like I cringe every single time I see any, like representation of bipolar disorder in the media. Because it never— it always goes for like, one of the two extremes either like manic or depressive, and never shows, like what a functioning looks like, or, you know, what a middle ground might look like. And kind of feeds into this narrative that like, you know, people with mental disorders are, you know, inherently criminal or, you know, inherently abusive and things like that. I feel like that was very scatterbrained.
Greyson:
No, but it's a great answer.
Harper:
No, but’s it’s good stuff. I think, I mean, media representation of disability is like, my whole, like, my whole passion, like, I mean, not all of it, but a lot of it. So, I think you're hitting on some really good stuff and could probably talk about media representation of disability for like, four hours or more.
Alex:
Yeah
Harper:
I think it's really interesting that it comes up in your IDIP that kind of focused around like, political, you know, messaging and that kind of stuff. Because I think I think we're in an age where, like, everything is political, and it kind of has to be and we just, I don't know, it's really interesting stuff.
Greyson:
Yeah.
Alex:
Yeah, thanks. Yeah. Um, it especially as because, like, the, the representation is important. Because, like, it decides, kind of, like, whether or not people think others are deserving of health care in, like, some grand sense, you know. Like, and especially in pop culture, like those stories, are able to change minds in ways that, you know, like, facts just can't.
Harper:
Yeah.
Alex:
especially, you know, like, I almost— as much as there are valid criticisms of it— admire The Fault in Our Stars in a way for that, because it does touch— or tries to touch on what it's like to be in need of like, treatment and to live with, you know, a debilitating, a debilitating condition.
Harper:
Yeah, that's super interesting. And I love what you said about like, that, like media representations are so powerful like that, like, I truly think that like, storytelling is our most powerful tool to like, communicate and explain and provide humanity to people. So.
Greyson:
And that's why I'm a film editor and why I want to go into filmmaking via storytelling. It’s essential to that.
Harper:
I love it. God, we're gonna, we're gonna get out there and change the media landscape, you guys. Let's do it.
Greyson:
Let’s do it.
Harper:
Um, yeah, so speaking of changing landscapes, so you're involved with the Emerson College Student Union, which I think is like, really cool. So, I was hoping that you could sort of speak to a little bit of like, what ECSU is and what it does, and of course, like, because we're on The Access Radio Hour, how, like, disability plays into that. Like, you know, Access and ECSU have done work together in the past, and that's a relationship that we're really, like, proud of and that we want to keep alive. So, if you could just speak to ECSU, that'd be amazing.
Unknown Speaker
Yeah, sure thing um, ECSU— I think certain members have referred to as a socialist org, I like to think of it as nonsectarian. But it's a nonhierarchical, left leaning organization that's trying to, that's attempting to address the issue of class to Emerson. Especially because like, with the yearly tuition increases, like it's— we all know that it's becoming more and more expensive and more restrictive to go to a college or university. And that's also reflected in Emerson student population. So, like, some of the work that we did last semester was we tried to protest the increasing tuition. And I, and we were beginning to see, like, the administration get a little bit worried and beginning to present, like counter-narratives or myths. But really, in the end, we did end up getting a reduction in tuition increase. I believe, you know, had the semester been normal, quote, unquote, you know, we probably could have gotten a even lower decrease in what they were originally planning for increasing the tuition. It's interesting to me, because the issue of class like kind of overlaps with everything. Like, especially, like I mentioned earlier with disability, if SAS requires a certain amount of documentation of a disability, or of any kind of need for an accommodation, in order for them to give it to you, only wealthier students who are able to afford the health care to get that documentation are going to be able to get the accommodations they need. And that's going to, in the long run, screw over lots of disabled students at Emerson. Emerson is a lot worse for not instead just giving out accommodations because people ask for them, you know. And, you know, there are likely some arguments that could be made for limited resources with— I’m making scare quotes right now. But it's also important to question like, whether or not those resources really are limited as much as Emerson wants us to believe and whether it's just a matter of like allocation, because a lot of the money from our tuition, like where does it go? And are we able to see Emerson's budget? One big thing that the ECSU pushed for last semester that I think we've since not pushed for as much this semester just because of COVID is a student member on the Board of Trustees with voting power, because that would be the only like structural change at Emerson that would allow us to better understand where money is going, how it can be better allocated. And like it can actually fight tuition increases and things like that.
Greyson:
That's really interesting, man. Thank you.
Alex:
Thanks.
Greyson:
Thank you so much. I know we went a little overtime this time, but it was so great talking to you. One of the, one of the best interviews I've had so far, if not the best.
Harper:
You say that every week, Grayson!
Alex:
*Laughs*
Greyson:
No? Do I? I just think everybody brings, like,
Alex:
No, no, no, Harper, don’t correct him— I am the best interview.
Harper:
*Laughs*
Greyson:
No, I guess, No, it just, it's really great talking to each person and each person has a different story and experience to tell.
Harper:
Yeah, for sure.
Greyson:
And it's so interesting.
Harper:
I love doing this. This was such— I'm so glad we're doing these interviews and getting people's stories and experiences and thoughts about the world like out there. I think it's really great.
Greyson:
Yeah. Well, thank you so much, Alex, for coming on the show.
Harper:
Yeah, thank you.
Alex:
Yeah, thanks for having me.
Greyson:
No problem. And thank you Harper for co-hosting with me.
Harper:
Of course.
Greyson:
It is always a pleasure to have you here on the show. And this will conclude our interview segment.