So many wonderful guests joined Sam and Nikki for the first season of Disability Bandwidth! To wrap things up, the duo reflect on the themes that thread through each conversation had: inclusive design, accessibility, and leadership.
Thank you to all of the Season One guests of Disability Bandwidth for sharing your stories, thoughts, and expertise.

References

 

Transcript:

[00:00:05] Nikki Nolan: Welcome to season one of Disability Bandwidth.

[00:00:11] Sam Proulx: A show where we talk with disability leaders each week about career, life and technology.

[00:00:17] I’m Sam Proulx

[00:00:17] Nikki Nolan: And I’m Nikki Nolan

[00:00:19] Sam Proulx: Let’s get started.

[00:00:20] Nikki Nolan: Hey Sam, this is the final episode of season one of Disability Bandwidth. Welcome.

[00:00:28] Sam Proulx: Yeah, final episode of the first season, but, you know, it’s hopefully very likely not going to be the final season. So, this is the reflection on the beginning of the beginning.

[00:00:41] Nikki Nolan: Let’s just jump into this. Let’s just start talking about ourselves. What have you been up to?

[00:00:46] Sam Proulx: Oh, I think I told you before whether this is the official podcast announcement or not, Fable will have made a couple of really big announcements that I’m super proud of and excited about. Fable is announcing our Fable pathways, focused on training for people with disabilities to help folks get into the tech career, whether they work with us or not. It’s an important thing that we’re working on, we’ll have announced our latest round of investment.

[00:01:12] So, a lot is happening in my work life and in my personal life, things have continued steadily. There’ll be another podcast for me, that I’m involved in at some time in the, undefined future, with more creative studios that are part of inclusion hub. So if you’ve seen any kind of press around that, it’s kind of one of the first outputs of that effort.

[00:01:35] And, I’m continuing to do the thing. I feel really in a very real way, like the weather here is just warming up and so I’m kind of coming out of hibernation and getting ready to do things. When it’s like minus 19 Celsius, just stay inside.

Nikki Nolan: I don’t have that at all. I live in California.

[00:01:56] Sam Proulx: Yeah. So you stay warm all year.

[00:01:58] Nikki Nolan: Yeah, but the days bleed together, like I’ve been living in California 8, 9, 10 years. I have no idea how long I’ve been here. And it feels like an endless day.

[00:02:08] Sam Proulx: You have it made. You’re going to say I have no idea how long I’ve been living.

[00:02:12] Nikki Nolan: I mean, do we really know how long we’ve been living? You know, it’s all just a concept.

[00:02:19] Sam Proulx: I mean, the universe could have been created 10 minutes ago with all of our entack the way they are now. Solipsism.

[00:02:30] Nikki Nolan: Why we came here today was to record our reflections on the season and what we’ve experienced and also to recommend to people to go back and listen to season one, if they haven’t listened to it. All the episodes are out now, since this episode is out. And our last episode was released with a guest on Global Accessibility Awareness Day.

[00:02:52] And that was Jennison who is the co-founder of Global Accessibility Awareness Day or GAAD, as you might hear him call it in the episode. I would love to hear what this experience has been like for you creating season one of the podcast and what were some of your favorite learnings?

[00:03:11] Sam Proulx: Oh, I was in mortal fear that you were going to ask me what my favorite episode of season one is. No, answer to that question because they are all great. I think one of the interesting things about season one and I don’t know that I would have picked it out when we sort of started recording.

[00:03:32] It’s one of these themes that came out, as we recorded. And it doesn’t surprise me now that it’s here, but is really hearing people say different things in different ways that all facets the same thing, right? Inclusion and inclusive design and accessibility and leadership are all such big topics.

[00:03:55] Every, all of the people we’ve talked about and all of our guests approached it from wildly different angles and life journeys and roads. But everybody sort of got to the same place and I think that’s really encouraging that within this community, there is broad agreement on what needs to be done to solve them.

[00:04:15] What resonated with you thinking of an Eagle’s eye view of this thing?

[00:04:19] Nikki Nolan: What was fascinating to me about season one was just how separate we are. You know, that came out a lot about how we have our own little communities, but how little we intersect in a meaningful way at a system level. And how so many of us have been, I had to create work arounds, from systematic exclusion. And I always do this. This is just like a theme for me. I always go back to the system and how can we repair and make the system better?

[00:04:50] There were just so many amazing things that happened this season. And I feel like I’ve learned a lot. I feel like I went on a big journey. It was fun hearing all of these people in these voices and these different perspectives for sure.

[00:05:03] Sam Proulx: Yeah. You know, we do talk a lot about how separated we are and we all have our own little communities and we all do our own little thing. We don’t work together and we don’t advocate together as much as we should. And I think it is something that I have brought out and I have talked about over several of these episodes.

[00:05:16] But if you think about any other community, if you look at, for example, politics, right? If you’re a farmer or a city person or rich or poor, you have very different politics and very different ideas about what the problems are and what the future should be and what should be done and what the solutions are. I think it is so interesting and encouraging and enlightening to me that no matter what our personal approach to disability is, or our journey with disability and accessibility is, we all seem to be coming to the same place. There is nothing that somebody- you, as somebody with cognitive challenges would say that I would like to disagree with, right? And they’d be like, no, that’s the wrong solution. I think it’s so rare to see so many people with different life journeys and experiences and abilities, all coming together around the same kinds of solutions.

[00:06:21] It’s not a matter of convincing everyone about the solution. It’s just a matter of bringing everyone together and organizing everyone to act.

[00:06:28] Nikki Nolan: Yeah, no. And I think that that’s the hardest part. I think organizing people together is really, really difficult. I have another podcast about student debt and back in April, we organized and went to a protest in DC and right after the protest President Biden extended the pause for student loans. And just seeing, it’s not like a one-to-one comparison, but seeing how hard it is to organize around something that’s affecting 45 million people in the United States, which is student debt.

[00:07:00] There’s like, a billion people with disabilities. The complexity of the organizing and the ongoing change. I think, you know, one thing that’s coming to mind for me is just how, when we asked that question and I just started noticing this pattern, like, what was your biggest success or what is something you solved that you were incredibly proud of?

[00:07:19] A lot of people had a hard time doing that because they came to this understanding that there is no real solution. It’s an ongoing experience where we’re constantly having to solve things over and over and over again, because the world changes and things are not fixed. And so I think that was really interesting to hear so many people take note of that accessibility inclusion, all of this as an ongoing experience,

Sam Proulx: And you know, your point about organizing really makes me think and wonder. There were some great protests that brought about the ADA and some of this change in the United States. But I wonder if the differences in culture are possibly caused by social media and the internet, possibly just caused by circumstances caused by other things.

[00:08:06] I wonder if we are as open to protest and sort of civil disobedience as we once were. Like if I was organizing a group of people with disabilities today to do a protest, my primary worry would be safety. Like what happens when the cops show up with tear gas?

[00:08:26] I don’t know if that was quite so much of a worry 30 years ago.

[00:08:31] And I don’t know, maybe I’m just overly paranoid and affected by some of the other things. Maybe it’s just me.

[00:08:45] Did you protest last April? I wonder what you must have thought.

[00:08:49] Nikki Nolan: Yeah, no, I think that getting people to show up and getting people to organize is hard in this ever-growing landscape of over stimulation and over saturation with too much information. I think we’re getting to a saturation point from my perspective, where it’s hard to focus on anything and it’s hard to know what you need to be a part of.

[00:09:10] And we’re also stretched thin. We’re stretched so thin because of life and things we have to deal with in our basic day to day things. So like on top of that organizing. But I’m fairly youngish, I was born in the eighties. I don’t know if that’s youngish, but you know, so I don’t have a whole lot of historical contextualization. But just looking at the documentation of past protests, it seems like it may have been easier because we were in closer proximity to each other to organize and show up. But I don’t know, like that’s just a feeling I have and feelings are not facts.

[00:09:46] Sam Proulx: I think I’m going to learn so much. As I sort of start to dig in and learn about, about the history of disability activism, and protest and things. Hey, maybe I’ll get to pose that question to someone because I think there’s also been this idea that online activism is the way to go.

[00:10:03] And I think people with disabilities are actually quite good at online activism and putting articles out and trying to raise awareness, maybe you have to show up.

[00:10:11] Nikki Nolan: I think it’s really hard because like, so if we’re getting into things that are frustrations. Frustration, rant hour, that’s not what this is going to be, but, it is easier to organize online, but then we might create this echo chamber where the information is only getting out to us and not disseminating to other people.

[00:10:32] However, I don’t think that that’s necessarily true. I just think that not everybody who needs to hear things is on social media and is online and complex problems deserve complex thinking and solutions. And I think that’s what we’re here to do.

[00:10:50] Sam Proulx: Yeah. I mean, we do.

[00:10:51] Get stuck in the echo chamber.

[00:10:52] I mean, I can tell you that a great deal of a blind advocacy thought, is in uncaptured podcasts. And I’m sure a lot of sort of autism stuff and stuff around cognitive challenges as in like visual on captioned means. Wouldn’t have been a thing before the internet. So maybe you’d have a point at the end that sort of reinforces our bubbles. I don’t know.

[00:11:12] Nikki Nolan: Yeah, it’s interesting. I feel like definitely with this podcast, I’ve expanded what I know. And I hope people also have expanded what they know and we would love to hear from people what they think about season one. They can also send us a message on any social media and tell us what they think season two should be.

[00:11:31] Sam Proulx: Absolutely. I wish I was part of this conversation. I wish I’d been on the podcast. I want to answer some of these questions. Absolutely. Get in touch with us because we try to bring everyone folks who are interested and passionate and related to our themes.

[00:11:45] Also something to be said for folks who have something to say and want to say it. And want to claim that voice. Because I think there’s so many people who get a platform like you and I, who start something. Cause we both got the talent and you’ve got the expertise.

[00:12:01] And then the folks that we like reach out to. Right? But sometimes I wonder if a lot of podcasts don’t welcome people who sort of reach out and say, hey, I’d love to be on. And so I wonder how many folks don’t get to have a microphone or a platform or a cause they can’t start their own thing and nobody else’s reaching out.

[00:12:17] Nikki Nolan: My other podcast, I have a lot of people who have just reached out from it. So if anybody reaches out and says, I have something to say, we’re still evolving season two. We don’t know what the theme is going to be. And we don’t know when it will come out, but super open to growing and learning and figuring this out with our community.

[00:12:36] Sam Proulx: Absolutely and you can probably tell just from listening to us that we are a very easy going pair of folks. It’s not terrifying. It’s not some kind of dragon’s den, guess in America it’s a Shark Tank kind of thing.

[00:12:54] Nikki Nolan: Yeah, I would love people from different countries, too. We had Canada. We had South America. We had America. But it would be great to get some people from Europe, from India, from Asia, from Africa, you know, Australia. I’m just naming continents at this point, but it would be fantastic to get a global perspective as well.

[00:13:19] So if anybody out there is from somewhere else and has some interesting insights that need to get out, we’re here for you. And we’d love to hear from you.

[00:13:29] Sam Proulx: Absolutely. You know, it’s always so exciting to talk to folks, especially in places where disability rights and organizations are maybe not as established as they are in some other countries. Because I feel that you go through that cycle, right?

[00:13:46] An organization gets established and it’s young and grassroots and scrappy.

[00:13:50] And you’ve probably had the same experience that I have where now some of our organizations are big and bureaucratic and not dynamic and scrappy that are representing us. So encouraging isn’t the right word, but that vitality of the folks who are still doing it, is we have so much to perhaps relearn from that.

[00:14:11] Nikki Nolan: Yeah. And our interview with Ean, which I believe was one of our first episodes, he talked about just the scrappiness of travel. And I just found all of the innovative things that he did to enable travel, but all of the amazing things that when he’s traveling, people are willing to go above and beyond to makeshift build a ramp in like a day.

[00:14:41] Sam Proulx: Yeah. It reinforces what you were saying. I think so much of disability discrimination is systemic. It’s not an individual.

[00:14:51] Nikki Nolan: Yeah, and I think that that’s something that rings true to me is that I don’t feel like for the most part individuals that I interact with for the most part, large caveat, the most part, necessarily approach me with bad intent. Whenever ableism comes out, that’s a systemic thing that they were taught. It’s not like them personally. It’s all very interesting.

[00:15:17] Sam Proulx: Yeah. Or I have had this systemic thing where, oh, well, I want to help you. I want to lead you over there, but the rules are that I’m not allowed to leave my post, this place I have to be here. I’m on shift. I’m not allowed to get out of the car or leave the cash for two seconds or whatever.

[00:15:36] And so I often run into the state of people who want to help.

[00:15:40] But have been required to follow rules that do not permit them to help.

[00:15:47] Nikki Nolan: Yeah. Interesting. Yeah, I know we have that very much in America where you can’t apologize for anything because you’re admitting fault and then you can get sued. Oh my God. Okay. So this is super random, but I just watched this YouTube video where they were talking about dueling in America and dueling across the world and stuff like that. When dueling was where two people were like I challenge you to a duel and then you would shoot each other. So after dueling sorta fell out of fashion, the thing that came into fashion was suing people. It was fascinating that suing people can have the lineage out of dueling. And I think that we have built a lot of systems around fear of helping, fear of doing things just cause we don’t know what the consequences are. And that’s understandable, but it’s also like, why is it so hard for us to just help each other?

[00:16:35] Sam Proulx: I think you might be right. But it does fascinate me that people sort of make these prognostications or these statements about American culture, about the culture in the US. It’s like, oh, well, no one will help you, because we’re all suing each other or blah, blah, blah, blah. Because we’re allowed to conceal carry firearms. We have gun culture, right? And like in Canada, our lawsuits don’t work the same way. We do not carry firearms. And yet the culture is basically the same.

[00:17:07] Nikki Nolan: Fascinating.

[00:17:08] Sam Proulx: I think if these things were as important to American culture, as we think that they are the lawsuits and the guns and the rest of it, Canadian culture would be wildly different.

[00:17:19] And I mean, sure, we’re different in some ways, but not really.

[00:17:22] Nikki Nolan: Fascinating. I know. And you hear so much about Canadians, like all of these are just stereotypes. And again, one of the things that I think that was helpful during the season was just how much diversity there is within disability and how we can’t stereotype people. Like when you’ve met one blind person, you’ve met one blind person.

[00:17:39] When you’ve met one deaf person, you’ve met one deaf person. And just the spectrum within each one of the disabilities, not everybody’s a hundred percent deaf, a hundred percent blind. You know, I think that was really, really fascinating to me. I was worried we were going down a hole of like stereotyping, which is something we’re like trying to break again.

[00:17:59] Sam Proulx: Yeah, yeah, no, no. I don’t think that’s where I was trying to go. I was just trying to talk about overall cultural trends. But I think when you talk about disability, the other thing that interests me is that technology has a big impact on my life as I think it does for a great many people with disabilities, right?

[00:18:23] Because it enables us to do so many different things that we would have struggled to do or been unable to do before. And for me, that really resulted in my love of technology becoming part of my identity. But it was very interesting to me that so many people with disabilities love technology and depend on technology and work with technology and make technology part of their jobs.

[00:18:49] But they wouldn’t, I don’t think based on our interviews, necessarily identify themselves as like geeks lovers or technologists or if they do that say, oh, I’m a legal nerd or whatever. Like it’s, I think I had this assumption that because technology is so important to a lot of us, it would be embedded into our identities in the way that it was for me. And it isn’t for a lot of folks, which is interesting.

[00:19:13] Nikki Nolan: Yeah, no. Me specifically, I have to rely on a lot of technology, but I don’t consider myself as knowledgeable as you are. And a lot of our guests had this deep love of knowledge. I’m not calling out Elsa but some people really love technology to that level.

[00:19:33] And then a lot of us, we just use it because like it’s helping make our lives easier. And sometimes it’s making our lives harder, you know? It’s very interesting.

[00:19:43] Sam Proulx: Also, I think that, if we asked her and I didn’t, but I think she would call herself a writer and thinker and futurist rather than like a technology person. You know?

[00:19:53] Nikki Nolan: Yeah. Yeah. I think, I think you’re right. I don’t know. I feel like Christopher, he was out of everybody this season, the most of the technologists. I don’t know. I don’t know if that’s fair, but I’m trying to think back to the season and think of all the amazing people.

[00:20:10] Sam Proulx: And it’s interesting. What do we even mean by technologists? Right? Ean invented a device to make things easier for himself, but doesn’t really identify as an inventor. He identifies as a traveler, really in a very real way.

[00:20:22] Nikki Nolan: Yeah. I think that brings up such interesting ideas about identity. That also came up a lot in our interviews about some people wanting to be called disabled first. Some people want to be people first. We all have different identities and different ways that we relate to the world.

[00:20:39] And human beings are complex and interesting. I really enjoy learning more about them. Like I’m a little alien from another planet. That’s sort of how I feel like as somebody who sort of feels like an outsider. I feel like I’m observing humans as if I’m not a human, but I am a human.

[00:20:57] Anyways, we just went somewhere. That’s not where we were supposed to go.

[00:21:01] Sam Proulx: We all contain multitudes. I forget who said it, somebody very famous, @ me on Twitter or something. I don’t know. There’s people screaming at their phones right now. Anyway, I think that’s a useful tool though, to be able to step back and observe as though an outsider. Because I know I sometimes fall into this trap where I don’t feel like part of this blindness community.

[00:21:23] And so I’m trying to talk about it or advocate for it, or something’s just not working or someone’s just not understanding something there. Could that be that frustration of doesn’t everyone know this? Everyone knows this now. What is going on here? Because when you feel like you’re internal to something, you feel like everybody else should be internal to it.

[00:21:40] And so it can be so useful to be able to set yourself as an outsider and observe whatever the thing is.

[00:21:46] Nikki Nolan: Yeah, definitely been a challenge and a benefit in my life.

[00:21:50] I feel like we’re getting close to the end. Is there anything that we haven’t talked about that you would like to talk about?

[00:21:57] Sam Proulx: Super interesting question. I think that one of the sort of interesting facets that we didn’t talk about, and I don’t know that there’s much to say about it. Other than that, I would, I just want to reinforce it for a sec- is that like all of the people with disabilities who are doing accessibility work came here to this place and to this work, after doing something else. And it makes me wonder, is accessibility work a place you can start your career as a person with a disability? Or do you need to go and do something else and get experience with the wider world and the problems before you can start on this career?

[00:22:42] It’s like authors. A lot of people do their best writing when they’re older and have experienced to lend to it. I wonder if those of us who work in it, disability, are there because we come to it later.

[00:22:52] Nikki Nolan: That’s a really interesting thing. I also think, based on- putting on my research analytics mind, we also talked to people who are later in their careers. And so maybe accessibility wasn’t as accessible. And now there are programs and things like that where we’re teaching accessibility.

[00:23:10] I do think experience is really, really helpful at seeing the variety and coming up with better solutions to challenges or what is a better word solution, you know? I don’t know. I can’t come up with a solution to that word.

[00:23:25] Sam Proulx: I think sometimes we aren’t, as accessibility professionals, even necessarily solving problems so much as we are engaging with problems. Or finding ways to make things work or ways to do things. I think the thing that makes me sort of nervous about the word solution is that like, oh, well, if you can’t see images, the obvious solution is to cure you and make you able to see. But that’s not what we’re doing. It’s like alt text then it’s audio description or it’s captions or it’s I don’t know, quote unquote, curing autism, whatever that means.

[00:24:05] Nikki Nolan: Yeah. I think we came across this in our interview with Chris and other people, we came across the thing of like sometimes seeing disability as a thing that needs to be solved. Solving the disability, as opposed to making changes within the broader system to just accept and include people with disabilities as they are.

[00:24:29] Sam Proulx: Yeah. The thing that I sometimes think about when I come to this topic of solutions and solving and access is like, if there’s a franchise where there’s a book or a movie. Even if the movie has audio description I’ll still rather just read the book. And I don’t know, like, that’s not saying that the movie is inaccessible or bad.

[00:24:52] But like, it makes me wonder, or sometimes when we talk about solutions, do we say, oh, well, that means the movie is not accessible because I didn’t enjoy it as much as the book. Like there’s people who do things in different ways and consume things in different ways. And I think maybe sometimes accessibility and diversity and inclusion is just about making as many of those different ways available as possible.

[00:25:14] Nikki Nolan: Yeah, and I think that that also wraps it up into inclusive design. There’s not one solution that will solve all the problems. Universal design isn’t a thing that is a hundred percent absolute, but what it is is about creating. You know, one of the things that I really took away is about creating diversity within your solution so that people can solve problems in the way that they solve problems with different pathways into being able to utilize the same thing.

[00:25:42] Sam Proulx: And it’s accounting for personal preferences and for making sure that people can do what they want to do and access solutions they want to access. I know lots of sighted folks who do not have any kind of challenges related to reading; they just don’t like reading books. And so like, we don’t want to say, well, that’s a problem we should solve.

[00:26:00] I think sometimes it’s just understanding problems too. Before we start creating solutions. Maybe a good example of this is in the blindness community, all the folks who want to create different smart canes, right? It’s like, oh, well, the cane has been around for hundreds of years.

[00:26:13] We gotta be able to make this better with technology. And my cane doesn’t break and it’s waterproof and I don’t need to charge it or change the batteries. It’s fine.

[00:26:21] Nikki Nolan: And it doesn’t have a patent and doesn’t have security updates or software updates. It doesn’t shut down in the middle of driving on your way to work like a bionic eye that they no longer service, you know?

[00:26:32] Sam Proulx: But people have all these ideas for solutions to make a smart cane when the problem that they’re trying to solve isn’t clear. In a lot of cases, it isn’t the problem that I actually have.

[00:26:45] Nikki Nolan: Yeah. I think that that’s a whole different sphere we need to eventually examine and I really like it. Well, Sam, this has been a great conversation and like all conversations we want to keep it going. Sam, where can people find you? Do you have anything you want to promote?.

[00:27:05] Sam Proulx: So, the most exciting things that I’m doing is my work with Fable right now. I know they’re my employer and that sounds sort of corny to say, but it’s absolutely true. There are so many big things coming up for Fable in the future that are going to have such a massive impact on employment and accessibility and the world. So absolutely keep up with that and what we’re up to over at www.makeitfable.com.

[00:27:29] And to keep up with me, the best place to keep up with me is on LinkedIn. I don’t really do too much on other social networks these days. But do keep up with LinkedIn. I also keep up with email.

[00:27:41] I’m sure my email is available in the public sphere for anyone who wants it. Love to keep these discussions going and engage with Disability Bandwidth on our social media, because we’re thinking about season two and what it should be and when it should be and how it should be and all of those things.

[00:28:00] So if you would like to shape that, we would love to hear your feedback and your thoughts and consider them all. Because we do this in order to make a change and the way we make a change is by having engaged listeners.

[00:28:17] And so if there is something in particular that you would like to hear more about or to say, we would love to hear.

[00:28:24] Nikki Nolan: I agree, a hundred percent agree. Well, I don’t really have anything to promote except for listening to season one of Disability Bandwidth, if you haven’t already listened to it. And to thank everybody for listening and you can find us at www.disabilitybandwidth.com, @disabilityband on Twitter. We are on Instagram and you can also follow me.

[00:28:49] I think I’m the most active on Instagram. @thenikkinolan, but most of my handles are @thenikkinolan.

[00:28:57] This was great!

[00:28:58] Sam Proulx: Yeah, now to split this whole podcast up into twenty-five-second clips for Tik Tok.

[00:29:03] We’re not on Tik Tok, I guess, I don’t know how that works.

[00:29:07] What were you saying about both of us being fairly young again?

[00:29:10] Nikki Nolan: Oh yeah. Age is a construct.

[00:29:17] We gotta get the young kids. So if anybody wants to help us with our social media, feel free to reach out to us as well. We’d love to get this message out there to more people. So please share, subscribe, give us feedback. We’d love to hear from you all.

[00:29:33] Sam. It was so good talking with you.

[00:29:35] Sam Proulx: Yeah. Good talking to you too.

[00:29:36] Bye.

[00:29:37] Nikki Nolan: Thanks for listening to Disability Bandwidth. If you liked this episode of Disability Bandwidth, please subscribe and share it with friends and family. Today’s episode was hosted by Sam Proulx and Nikki Nolan. Edited and produced by Nikki Nolan. Transcripts are written by Emma Klauber. Theme music is created by Efe Akmen.

[00:29:53] Special thanks to everyone at Fable who without their support. This show would not be possible.

You can find out more about Disability Bandwidth on Twitter, @disability_band and Instagram, @disabilitybandwidth, or on our website https://disabilitybandwidth.com/.

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