Nikki Nolan: We are here today on Disability Bandwidth and to start Sam, I would love it if you could introduce yourself.

00:00:11 --> 00:01:52 Sam Proulx: Sure. Make me go first. (both laugh) No. Okay. So yeah, I’m Sam, Sam Proulx. I’m the Accessibility Evangelist at Fable, which means that I talk a lot about accessibility, how to do it, why it matters, all of that good stuff. I also talk a lot about why it’s so important to involve the voices and the lived experience of actual people with disability in all of your kind of product and development processes, right from research and prototype through to the coding and design and ideation and testing and all of that, because, you know, as the saying goes nothing about us without us.

That’s what Fable helps companies do, is get that voice of folks with lived experience of assistive technology involved in research and testing. A little bit about me. I am completely blind and have been using screen readers all of my life. My father was also completely blind.

So there has been a talking computer in the house for as long as I can remember. My father worked for IBM for over 30 years. So, I’ve always sort of had the incredible privilege of being at the very forefront of technology and watching as the industry has grown and changed in really exciting ways.

Visual description of me always feels weird because as someone who is completely blind, I do not look in the mirror. And so what you get in the visual description is more how I perceive myself than what the actual reality of the thing is. But I’m a dude, with facial hair, a Ravenclaw class crest off to my left, and a Brailler behind me. I tend to wear boring clothing. I think it is probably the best way to put it. Do you disagree?

[00:01:52] Nikki Nolan: No, no, it’s not necessarily boring clothing. You wear a lot of collared shirts. I mostly can only see you from the hip up, you know, I mean, I only see your shoulders.

[00:02:02] Sam Proulx: I mean big reveal right at the end here. There’s nothing, you know, shoulders down and just a floating head. No.

[00:02:11] Nikki Nolan: That would be such an epic reveal. Oh my gosh.

[00:02:15] Sam Proulx: Oh, I always tease people at work when I meet them for the first time. Wow. So you’re not just an AI. That’s cool. All right. Hey, we got to meet at some point. I think we’re making that clear. Why don’t I shoot it over to you? Enough of my silliness.

[00:02:29] Nikki Nolan: I am Nikki Nolan. Did you say your pronouns? You did, didn’t you?

[00:02:34] Sam Proulx: I might’ve just said, man, but he/him, yes.

[00:02:36] Nikki Nolan: So my pronouns are she/they, and I actually just shifted to she/they mostly because, if my gender doesn’t matter in the context of why someone’s talking about me, I prefer them just to say they or them or something like that. I don’t really think that my gender matters when describing things that I do.

So that’s why I use she/they. My title, I am a podcast host. I am an artist. I am a software product designer at the moment. And I’ve been getting more involved with what is disability and what is my lived experience and really owning my lived experience as something that is like important and that I would love to share more about because I think I have a really, I don’t think I have a unique story, but I have an interesting story where I have been misdiagnosed several times and I have an invisible disability and my invisible disability is sometimes visible when I’m writing.

I’m dyslexic. I have sensory processing disorder. I have Ehlers-Danlos syndrome. I have mobility issues on my right side from a vehicle accident that happened a few years ago. I had reconstructive foot surgery. So I have a little bit of limited range in my feet. Yeah, it’s just a ball of fun inside my body.

I also believe I’m on the spectrum. There’s no diagnosis, but there are a lot of indicators that I see. I have a lot of traits about that.

Visual description, let’s go visual. Let’s go visual! So, I am a white woman, who is five foot six. I have dark brown hair with bangs.

My hair goes past my shoulders. I typically wear a jumpsuit with a very loud pattern on it. Usually, it has like tigers or rainbows or smiley faces on it and triangles. So if you come to see me, I’m typically wearing that. I have blue eyes. I am left-handed. I mean, that’s not a visual description, but I am left-handed.

I was doing a body scan and I was like, what are things about me? Behind me I have a bike and some artwork because I collect artwork. That’s one of my favorite hobbies. I love art. I have a master’s degree in fine art. I also have a bachelor’s degree in fine art. I transitioned into tech to pay off my student loans, which I actually did and have another podcast about it that people can check out if they want called Matter of Life and Debt.

[00:05:18] Sam Proulx: What a fun transition from art to design, from UX design to software design. I mean, does it feel like you’re bringing your arts skills to bear or do you just feel like you’re following the rules of the design system and doing the thing and the kind of robotic way?

[00:05:34] Nikki Nolan: Oh, that’s a great question. So for me, the transition was not planned. I didn’t plan to go into design. However, I don’t dislike that I’m in design. I think design has the opportunity to solve a lot of problems. And so I do love that aspect of design. I do feel like they are two different worlds for me though. I did go, I thought I was going to be an artist, and then saddled myself with a little bit too much debt, which made it impossible for me to pursue that then. Then I just found myself sort of haphazardly landing these positions where the theme kept coming up, do design.

I initially had started out as a front-end engineer, quickly learned that I did not enjoy doing that. So the company I was working for was like, yeah, you don’t seem like you like this. And they actually were like, now you’re the designer. And then I had to quickly ramp up and figure out what that meant.

And so I am not a trained designer, but I am an on-the-job trained designer. It’s really fun to solve visual problems for me, but it’s also really fun for me to solve real problems. And I think that’s where I struggle a little bit with design because sometimes I will see design only solving visual problems when I like to solve fundamental problems. I like to uncover what is going on and see how I can remove barriers, to allow people to achieve whatever they’re trying to achieve. And so I do think through design, you can do those things.

[00:07:14] Sam Proulx: I mean, that’s the line from front-end engineering to design work. Right? Because it feels like with a master’s in fine arts, there’s a whole other path, like pop art, that you could have, know, kind of done the soup cans, as the famous saying goes, right?

[00:07:29] Nikki Nolan: I am not a pop artist. I am a conceptual installation artist and it’s not everybody’s cup of tea. So I am not very sellable. I’m not very commodifiable. I don’t typically work in the realm of things that people like, if I’m being honest. My art is very much like performance art. I’m really into absurdity. I love absurdity and I love, well, some of my artwork, most of my artwork is about the fallibility of human memory and like what we do with the documentation of things and how much more we rely on documentation. videos, audio, all of these things to construct our realities.

And so I play a lot inside of photography. I play a lot inside of sculpture. I play in sight of found artifacts from my childhood. I feel like it’s almost compartmentalized for me. It’s like I do my podcasting. I do my art. I have my job and I’m a designer. And for me, they’re all sorts of things I pursue with different types of energy and exploration. Yeah.

[00:08:41] Sam Proulx: Interesting cause I feel those things, like the fragility of memory and the kind of art installation and the absurdity and stuff, are so deeply connected now, as we have the set of sort of reality of Facebook and doctored photographs and fake news, and it brings me to an idea that I’ve had for a long time- that I’ve always wanted to do just for the heck of it, which is like get access to someone’s calendar. And give them four things and say, you did three of these four things last week, which one did you not do? And I bet you, most people could not do it. Right? Cause as soon as you see the thing, you assume, I probably did that. That sounds like something would be on my calendar. I probably did that. And then you remember having done it. That’s an aside, but it’s that that’s always interested me.

Right? Or the thing, like if you show someone a Photoshopped photo, a photograph of Disneyland, they now remember going there, even though they didn’t.

[00:09:28] Nikki Nolan: So I’m really fascinated by a lot of the research that came behind a lot of that stuff. When I was in grad school back in 2009ish, a lot of my thesis work was around sort of like that scientific information about implanting false memories, of witnesses misremembering things, and all of that stuff led me down this path of really exploring, what photography, social media, social constructs sort of doing to us.

Actually, there’s a YouTube video that you all can go and find of me talking about some of my artwork from back in the day. It’s got baby me talking- I’ll send it to you, Sam. I just realized- we’ve known each other, but you and I haven’t actually sat down and talked about this.

[00:10:15] Sam Proulx: I mean, we worked together in a very particular vein and that’s like a fun vein. Do you know what I mean?

[00:10:24] Nikki Nolan: Yeah.

[00:10:24] Sam Proulx: And it’s also such a deep and rich vein as we talk to each other and share each other’s experiences that I think sometimes we don’t move out of that thing.

[00:10:40] Nikki Nolan: I really want to ask you about you, Sam, tell us a little bit about you. What got you into being an Accessibility Evangelist? Take me on that path as well.

[00:10:42] Sam Proulx: There was absolutely no plan. All through high school, I did the thing that some young men do as they grow up and they want to be their fathers. I sort of felt that I was going to be a computer programmer and that’s what I was going to do. I got into high school and I could not do the math. I just couldn’t do it. Some of it is because I don’t have a natural aptitude. But, some of it is because the accessibility resources were not there. Right? There was a lot of graphing. There was a lot of once you start to get into calculus, if you don’t have visual aids that are well-adapted, you can no longer do it. You can no longer keep up. So that was a disappointment to me. I had to figure out what to do if I can’t get the math to go into a computer science degree in university. It’s not going to be possible for me. So I figured, well, what is my second choice?

I like writing. I like speaking. So that must be nice, I should be a journalist. I went to university for journalism, and of course, all of the newspapers immediately closed and went away. I pivoted, it was around this time that it wasn’t even cryptocurrency. It was just that Bitcoin was becoming a thing. My father had recently retired from IBM. And neither of us had any sort of political aspirations, we’re down with fiat currency and let’s take control away from the feds and whatever. It was just that people are making money at this. He’s got 40 years of experience and I’m pretty intelligent, we should be able to do this. We can make a business, we can do this. He was looking for something to do and there were no prospects for me. So we did it. Did it for, let’s see, from 2012 to 2019. Did the whole thing, had some land, was running a mining operation, doing some speculation and did not become a millionaire, but I will say, sort of kept food on the table and never lost money. So I think that’s pretty good. Yeah.

[00:12:34] Nikki Nolan: Wow. I didn’t even know that about you.

[00:12:38] Sam Proulx: Yeah. It was pretty good. I learned a lot. Those experiences were experiences that I use as much as my university experiences. I think part of the reason why I got out of it, well, first of all, it is the most stressful thing that you can do, right? Cause it’s like one day you’re a millionaire and the next day you’re broke.

There’s nothing that you can do to sort of control the thing. So it’s super stressful that the joke I always share kind of with the founders of the company I work at now is, oh, I love the stability of working at a startup, right? Compared to what I was doing before.

[00:13:11] Nikki Nolan: Wow. That’s a statement. That is a statement because I know how notoriously stable startups are.

[00:13:20] Sam Proulx: Compared to Bitcoin, they are a rock of stability. You know that there is probably going to be a paycheck. Whereas with Bitcoin, one month you’re a multi-millionaire, and one month, you’re not sure if you’re gonna be able to pay the hydro bill. It’s wild and the stress and the number of people in that community who had severe mental problems and lost their lives and just all kinds of stuff.

[00:13:41] Nikki Nolan: Ooh. Wow. I didn’t know that. I did not know that. So he went from Bitcoin mining to being an evangelist of accessibility.

[00:13:53] Sam Proulx: Actually, no, I went from Bitcoin mining to the founder of Fable, Alwar. She used to work for Rogers, a big telephone communication company here-

[00:14:04] Nikki Nolan: In Canada, because not everybody realizes that you are in Canada, I’m in the US.

[00:14:08] Sam Proulx: Should clarify that. Yeah, there we go. But anyway, she worked very closely with my best friend named Dave and she said to “Dave, hey, do you want to work with me? I’m going to do this accessibility stuff. I think we can do it better. I’m going to create a startup. Do you want to come to the startup with me?” And Dave said “well no, I’m not leaving my steady corporate job. I have got a family and an apartment, but why don’t you talk to my friend, Sam, he’s getting out of Bitcoin. I think he’s looking for something.” So we met and I immediately got the vision behind Fable and became one of the first employees of the company.

And I actually started off as the community manager. So I built the first hundred of our testers. All of whom are people with disabilities who use assisted technology, who worked with us, testing websites and apps and digital products and services. I spent quite some time building that.

And as I built that, it became clear to me that the thing that I’m most passionate about is speaking and sharing my experiences and like presenting and recording doesn’t give me nerves. It doesn’t make me nervous, nothing like that. It also became clear to me that the skills of managing and building a community for one hundred are very different from the skills of scaling it to its first thousand. If I can bring up my ego and speak for myself, I think I’m pretty personal. And when your community is your first 50 people and you can afford to be personable with each person and you talk to them and you get to know them and you make friends with them and you can get folks to follow you.

But I don’t work in the kind of organizational metrics kind of way. So managing a thousand people would not work for me. I thought, well, why don’t I figure out what can I do with these skills of being personable and getting people who seem willing to listen to me. How can I continue to promote the vision of Fable and let the community manager be someone who has the skills that are now needed for the next order of magnitude? And so that’s how I got into being an Accessibility Evangelist.

[00:16:03] Nikki Nolan: Ooh. Yeah. Thank you for taking me along that path.

[00:16:07] Sam Proulx: Quite the journey.

[00:16:08] Nikki Nolan: Yeah. I love your journey. I just stepped into a reality television show where I was like, I love that journey for you, Sam.

[00:16:17] Sam Proulx: Oh man. And, you know, it was really interesting because as we built Fable and had our community and it’s kind of like our community, our contractors, and it’s this like gig economy type thing. Sort of like I did through university to support myself. I did like the Amazon Mechanical Turk and the associative content and the, like all of that gig economy, proud work, distributed work type stuff.

I came to Fable with a bit of an idea of what worked there and what didn’t work there. And what should this be and what should it not be? Which I think was really helpful at the beginning when we’re trying to figure out what is the thing and how do we build the thing?

But of course, now that it’s built, now that it is the thing, right? It was time to move on and to do something else. So yeah, done all kinds of things. Someday I think there is probably a pretty decent science fiction book inside of me. I mean, that’s nothing. Ask any single person that you will ever meet and they all intend to write a book at some point. I’m sure you do.

[00:17:15] Nikki Nolan: Yeah, I’m sure I do. But also being someone that’s dyslexic, it makes it hard to feel I can pursue that. However, podcasts are really wonderful for me. It’s a medium that feels really natural and really easy for me to experience. So I’m really glad that I came across this medium because it is something that I work well with.

I am the editor of this podcast as well. You and I are producing it and Fable is our sponsor. Thank you so much Fable for helping this podcast become real. They really have been incredible to work with. I’m so glad that you worked there. I feel like this is a good company. It seems like a really good company.

Every single person that I know that works there seems to love it. I think it might be good for us, now that we introduced ourselves and people know who we are and a little bit of the lenses that we bring to things and where we’re coming from. Let’s talk about why we decided to do this podcast together now and why we decided to do this thing.

I met you because I was running an event called Disabled in Tech. It was a public event. We’ll add the link here. And all of the panelists on the panel of Disabled in Tech, where we were talking about how there is a lack of representation of people with disabilities in tech leadership. All of those people from the panel are on this season.

I don’t remember who specifically at Fable was like, “Sam really wants to do a podcast. He has a really great voice for podcasting.” The person that introduced me to you, they were like, “Sam would be an amazing podcast person.” And that little nugget was in my head and the person said that before we even did the Disabled in Tech event. And the event went so well and I got such good feedback from it, that I was like, we need to keep this conversation going.

And so I approached you and was like, would you want to do a podcast? And you said, yes.

[00:19:06] Sam Proulx: I was like yeah absolutely because that panel was so great. And in a very real way, this is sort of grown out of that and a follow-up to that. This goes to show that whenever you do events, they can really make changes. Even if it feels like a small event, right? It inspires people and gets people to keep the conversation going.

But then you brought up the podcast to me and I’ve been thinking about doing a podcast for a while. I’ve been thinking and looking around and trying to figure out, what do I have to contribute to the podcasting space? Because for those of you who are not aware, there are a lot of really incredible podcasts that are run by incredible blind screen reader-using-hosts that talk about the screen reader world and the blindness world and the visual impairment world. I thought I don’t want to do that. There are people- there’s nothing wrong with that- but there are people doing a great job of that already, that if you want that it is out there, go listen to it.

It’s incredible. I don’t need to do more of that. There are people who have that, who are doing a great job. Then when you approached me, I thought, yeah, this is something that is new and that is different. And that hasn’t been done before. It felt, and still feels like you are the ideal co-host.

As I frequently joke, you’ve come up with the actual planned questions and keep me on track as I veer wildly off-topic with every interview.

[00:20:30] Nikki Nolan: I love your curiosity. I love that you bring this real conversational curiosity. I feel I am a very structured sort of person. And if I don’t have that structure, I tend to not know what to talk about. But you are teaching me so much more and really helping me get more conversational. And I’m like, so appreciative of that.

And It’s been really lovely having you as the co-host. And one thing I want to touch on, which is something you just said is what really drew me to this as well is that there are a lot of podcasts out there that have, you know, two wheelchair users or two people who are on the autism spectrum or two people who have hearing impairments or are deaf. Where we have this thing, where we join our communities of disabled people and tend to sometimes become insulated.

And so I loved the fact that you have a visible disability and I have an invisible disability. And between those two places and the fact that we’ve interviewed people with a very wide range of different disabilities, We get to learn from each other. We get to build those connections between each other and see, you know, where we’re the same and where we’re different and where we need to learn and grow. And I don’t know, it’s just like, it’s really nice to have the space between us and also the similarities.

[00:21:49] Sam Proulx: Yeah, I mean, it was one of the first things that I learned when I came to work at Fable. And when I started doing the things that I do. I don’t know whether it applies to other folks, but because screen readers occupy so much of the web accessibility conversation, sometimes you can fall into a trap of thinking that, okay, as a blind person, I am an accessibility expert. I know all of the things and it’s cool and great. And like I’ve got this. I very quickly learned as I thought about how blind people need to be more included in everything and research and all this stuff at Fable. That’s where I very quickly learned that I know almost nothing outside of the somewhat narrow community of blindness and visual impairment. And I went on a big learning tour around that, and around voice control and dictation and the needs of folks who have different physical challenges but hadn’t really gotten the opportunity to sort of dig into folks who are not neuron-typical and, and the challenges that go with that.

So I’ve much from you and from doing this podcast. From you directly and just sort of from the way that you work and the way that we figured out how to work together, as well as from our guests. So, if you are one of those folks who maybe is listening to this and thinking, I already know about screen readers, this is all this is- you are going to learn so much just like I did throughout the journey of this thing.

[00:23:27] Nikki Nolan: So we ask these questions of almost all of our guests, what is a problem that you have solved that you’re really incredibly proud of?

[00:23:28] Sam Proulx: I really don't like saying the problems are solved because are solutions that work for now. but solutions always need to change and adapt, but I don't think any problem is ever completely solved. one of the things that I have been sort of tangentially involved with, is kind of around access to e-books. And we have come so far where people who are blind or visually impaired can buy a book on say Kindle the day that it's published and be able to read it.

[00:23:57] and of course there's been some things like, like the Marakesh Treaty, but, there's also been sort of a lot of writing to makers of eBooks and eBooks software and advocacy and all of these things. and I don't even want to say that I've solved it because it's the entire community of people with visual impairments who

[00:24:14] Sam Proulx: I mean, solved is a very sort of final term.

Nikki Nolan: Yeah.

Sam Proulx: I really don’t like saying the problems are solved because they are solutions that work for now but solutions always need to change and adapt, but I don’t think any problem is ever completely solved. One of the things that I have been sort of tangentially involved with, is access to ebooks. And we have come so far where people who are blind or visually impaired can buy a book on say Kindle the day that it’s published and be able to read it.

Of course, there have been some things like the Marrakesh Treaty, but, there’s also been sort of a lot of writing to makers of ebooks and ebooks software and advocacy and all of these things. I don’t even want to say that I’ve solved it because it’s the entire community of people with visual impairments who worked on this for seven years and brought it to a solution.

It’s, I think, one of the greatest changes in sort of the past 7 to 10 years, that affects the lives of those who are blind, visually impaired. Perhaps on something I’m more directly involved with, I am making progress every day. I am making progress on that problem that accessibility is thought of as like a checklist.

And it’s thought of as just kind of an abstract thing and nobody puts names to it and faces to it. And the voices of people with disabilities are left out of design and research and development. And everything that we do at Fable is working on that problem. Will the problem ever be solved? No, I don’t think it’s work that is ever done. I’m incredibly proud that I get to get up every day and work on that problem. And make it better.

I could work at Fable for 150 years and I would never really say the problem is solved. But my goal and my objective and the thing that I’m proud of is that every year I can say I made it a little bit better. I helped to make things a little bit better in that very particular area. What about you? Now you’ve got me curious.

[00:25:19] Nikki Nolan: Oh, no, the entire time you were talking, I was listening, but also I was like, oh no, I don’t know the answer to this question. Then all of a sudden I’m like, oh my gosh, are we asking our guests something that’s really difficult?

[00:25:37] Sam Proulx: I mean the thing that I love is that all of our guests have had very unique and fascinating answers to it.

[00:25:42] Nikki Nolan: Yeah, I agree. I agree. So what am I incredibly proud of solving? I guess starting podcasts actually has been just a significant shift for me. It took me about two years to start my other podcast. I was taking podcasting classes. I took a bunch of writing classes. I really over-thought it, which is like something I do.

I tend to circle inside my brain and then never start. And just starting the other podcast that I did and getting into the workflow. And I actually have brought on a new host for that show so that I could dedicate myself to focusing on this podcast, producing and creating the space for people.

I really think that I am so incredibly proud of the thing that I solved was like, how do I even make a podcast? How do I even get it from point A to point B? And I’ve been learning along the way. And I won’t say that I’m perfect at this, but it brings me a lot of joy. And it brings me a lot of happiness to have this dedicated time to talk to people about interesting topics and then be able to share those interesting conversations out with the world.

It’s brought so much into my life. Like two of my best friends are previous guests on my other podcast. We talk pretty much daily. And it’s just given me so much. Podcasting has given me so much. I’m so glad that I figured out how to do it.

[00:27:09] Sam Proulx: Yeah. I mean, podcasting is like radio used to be right? It’s that very intimate experience of sitting down with people. Yet it’s that intimate experience that is shared with the whole world. It’s sort of what radio used to be, what I wanted to get into it, through the forties and fifties and sixties.

Unfortunately in a lot of ways, it is not that anymore, but his tastes have changed. And the economic realities have changed. And now podcasting does the thing. So that’s fine. But I mean, radio is sort of a thing that I thought about getting into, I did some internet radio as a teenager where you host the whole thing and take all the calls and got completely burnt out on that because doing it all yourself was very stressful live.

[00:27:47] Nikki Nolan: Oh live. Yeah. I mean, up until recently I was doing everything on my first podcast and then brought in someone that brought in another person. And what I’ve loved about this podcast is how supportive Fable has been, not only of being our sponsor, but they help us with visuals and they give a lot of feedback. That’s like really, really moves us forward.

So I’d love to transition into what do you feel is your biggest frustration in your career? And is it still happening?

[00:28:16] Sam Proulx: How do you decide whether one is bigger, worse than the other? So I’ll just list off a few. First of all, the underemployment of people with disabilities is such a large problem and you really need to solve it holistically.

There’s been a lot of focus in the past, oh, if we get people with disabilities, good enough technology, the employment problem will go away. It didn’t go away. And then we said, oh, if we give people with disabilities enough access to education, which we still haven’t really done, but still like, we improved that. And the unemployment problem didn’t go away. It’s about technology access. It’s about education. It’s about representation. It’s about sort of ending discrimination. It’s about accessibility. It’s such a multifaceted problem. I think we are making progress, but like, it is a problem that needs multiple people and organizations, and communities to work in a coordinated way. I think it needs to be done in a cross-disability kind of way. I don’t think we can sit here and I can solve under-employment for blind people. And just like, I’m not gonna work with deaf and hard of hearing people. I’m not gonna work with people with cognitive challenges.

Cause that’s not the problem I’m trying to solve. Right? But I think there’s maybe even in other communities, right? Folks who are not neuro-typical, maybe they say, well, we’re going to solve the problem for us. We’re not going to work with blind people because that’s not the problem.

And it’s just very frustrating to me that even to this day, I think there’s still a reluctance for various organizations to work together. There is also in some communities a belief that accessibility is kind of a limited pie and other people set people with disabilities against each other.

There’s the like, oh, well everything gets captioned. There’s not going to be enough money to do the audio descriptions, right? Oh, if we have to audio describe everything, there’s not going to be enough money to do sign language. And, like, oh, well there’s only so much time and effort people are going to put into accessibility. So we have to fight to make sure that our thing is first. Even if that means other people’s things don’t get done. And, so we can’t work together, in a very real way, right? Like people who advocate for captions, don’t also advocate for audio description and vice versa.

I think that is very slowly starting to change, but the change is very slow and I would like to see it happen more. That was a long-winded answer. And I apologize.

[00:30:32] Nikki Nolan: No, it was great. I think my biggest frustration is in a similar vein is systems that oppress people with disabilities. One thing that I’m currently a little frustrated about is diversity, equity, and inclusion that doesn’t include disability. And disability is such a cross-sectional identity that happens to every community.

And yet I feel like very underrepresented and there are so many ablest thoughts out there. Ableism is the thought that able-bodied people are somehow better than disabled body people. That was a terrible description of what that is, but I just wanted to make sure that if I’m using words that people don’t know that they have a little context into it. But I find myself as a neuro-diverse person running into a lot of barriers that I don’t see other people running into.

And as such, it’s been almost impossible for me to get a promotion at a job. And so it’s very frustrating for me because I don’t perform neurotypically and a lot of systems are set up for, you know, neurotypical, able-bodied people to be successful. And because I am neuro-diverse, it’s not like I can solve it through accessibility.

This is like system-wide changes that need to happen to make sure that we are creating space to elevate people who maybe think differently. Who may show up in the world differently? Who has value? It’s very hard for me I think in my career to feel like the way that I think, or the way that I show up is of value. So it’s very, very frustrating for me individually.

[00:32:20] Sam Proulx: I wonder if some of the problems with diversity, equity, and inclusion relate back to that pernicious idea of the pie, right? Of there is only so much to go around. I was sort of watching a very fascinating documentary about feminism in the sixties, and how they specifically wanted to exclude women who were not straight. Because they were like, oh, well, we don’t want our movement to be about that because they’re not going to win.

So we need to exclude them to make sure that we can win because there’s only so much that can be done. Right? And I wonder if that story in some small way is playing out again when it comes to including disability into this.

[00:33:03] Nikki Nolan: I think that’s an interesting thing because I know some people who have a cross-section between the queer identity and the disabled identity where they feel more included in the queer identity than they do in the disabled identity. And I think there are so many things it’s a multifaceted issue, but I do think that there are parts of disability that are so excluded from society, in a way that makes it even harder for us all to connect with each other.

[00:33:53] Sam Proulx: I mean, I think it’s so interesting that you said that you know folks who feel more included in the queer community than the disability community. I know folks and have spoken to folks and have heard stories told by folks who feel exactly the opposite. Who has been told that like, hey, are already a small disenfranchised community? We cannot afford to make materials accessible to you. We need to be exempted from accessibility laws around physical spaces, because we are such a small and underrepresented sort of disenfranchised community, that putting accessibility requirements on us is too much of a burden. And so we shouldn’t have to do it. And so you just have to be excluded.

[00:34:12] Nikki Nolan: Oh, whoa.

[00:34:13] Sam Proulx: That's the way it is.

[00:34:13] Nikki Nolan: Fascinating. Yeah, no, I think that this is the reason that when you’ve met one disabled person, you’ve met one disabled person. When you’ve met one queer person, you’ve met one queer person, you know, like we can’t generalize about people. And, that’s why having conversations with people really opens up our world.

It really opens us up to see the value of all of our different perspectives to make a more inclusive world that allows us all to be successful. Sam, what a myth around disability that you want to bust?

[00:34:45] Sam Proulx: The myth that I bring up in a lot of the talks that are given in presentations, and it relates directly to what I called this pernicious idea of the pie. That is the idea that accessibility is somehow a burden or a charity, or it takes away, or it means that designers have to, you know, aim for the lowest common denominator. Things like that. More accessible things are better things, right? They’re more customizable for everyone. They are more useful in more different types of situations. Diverse teams create better results. So accessibility is a tide that lifts all boats. It’s not like, oh, if we, if we have to do this accessibility thing, it’s taking away and now there’s going to be less resources and less things. Doing this includes more people.

It has a return on investment and doing more of it includes more people and has greater returns. It doesn’t take away and it’s not what they call a zero-win game, right? Where, like, if you get your thing, I don’t get my thing. That’s just not how it works either from a disability sort of thing.

Or we hear this in companies. Like I don’t have the time to do this. I don’t have the resources to do accessibility. I can’t do it because X, Y, and Z, and that’s just not correct. Accessible things are better things. An accessible world is a better world. And accessibility is not a moral calling or a kind of charitable calling. Accessibility is something that makes things objectively better.

[00:36:24] Nikki Nolan: Oh, I’m over here, like snapping in my head. I fully agree. Oh, well we’re getting close to the end. Oh yeah, I have to do a myth. I think that the myth and I’ve talked about this earlier is basically that when you’ve met somebody who has a specific identity within disability, you know something about the community.

I think that so often I see that people without disabilities are making a lot of the decisions for accessibility, making a lot of these decisions and they don’t have that lived experience. I guess the myth I want to bust is that people are the same. And that disability is a spectrum.

Or how we like to say it, the disability bandwidth, which would, the reason we call this Disability Bandwidth is that we didn’t want to use the word spectrum because we didn’t want to be that specific. But bandwidth sort of has that same connotation of being about a range of stuff.

And so I guess the myth, I’m not really being very clear right now, so Sam, can you help me out?

[00:37:33] Sam Proulx: Myth seems to be that people with disabilities are a monolith.

I think we have had guests on the show already who would not necessarily agree with each other. I think if we looked hard enough, you and I could find things that we don’t necessarily agree on. There are certainly other blind people who think things that I do not agree with. And that is healthy and fine and okay.

And that is necessary to keep in mind, right? You wouldn’t assume, I mean, if you say, oh, all people of this ethnicity are like this, we know that’s not okay, but somehow it’s okay to say, oh, blind people need this. Right? It’s somehow okay in the disability space and it’s not. And in some real ways, I think people with disabilities, if you are a person with a disability stop for a minute and think about maybe some of the ways that you have bought into this myth.

Right? Sometimes there’s this feeling of like, oh, I don’t want this other person with a disability like if they do something that represents poorly on me, right? And sometimes we can look down on each other or we can compare ourselves in that way because we all buy into this myth. And so it’s a myth that needs to be busted sort of worldwide for everyone.

[00:38:39] Nikki Nolan: Yeah, I think Sherry talks about this in our first episode, which everybody will listen to after this one will come out next week. So this podcast will be a weekly podcast. We can’t wait for you all to hear it. And so I’m going to take us out on the question that we ask most of our guests. I think we missed a few, but, what is the first piece of technology you remember using and what was it for?

[00:39:03] Sam Proulx: I have used so much technology over the years. I also want to do the very, unhelpful thing where I want you to define using. As I said, my father worked at IBM for many, many years. And so like, when I was like three, he’d put his computer OS II on it and he’d set it up so that like, I could press the buttons on the keyboard and it wouldn’t do any harm, but it would sort of talk to me and I could, know, pretend I’m using the computer like I was three. Does that count as the first piece of technology that I used? I don’t think so.

[00:39:36] Nikki Nolan: what do you remember? What is the first piece of technology? Or maybe I could

[00:39:39] rephrase this.

[00:39:41] Sam Proulx: I absolutely remember that, but I don't think I was using it for anything. You know what I mean? I was just pressing the keys and it was making funny noises. Which was great when you were three. but, but I think the first sort of piece of technology ever used for a thing, probably either the speak and spell.

[00:39:53] Nikki Nolan: What do you remember? What is the first piece of technology? Or maybe I could rephrase this.

[00:39:58] Sam Proulx: I absolutely remember that, but I don’t think I was using it for anything. Do you know what I mean? I was just pressing the keys and it was making funny noises. Which was great when you were three. But I think the first sort of piece of technology ever used for a thing, probably either the Speak and Spell. Which many of you probably remember, like the teen movies?

Nikki Nolan: That’s the first thing I remember!

Sam Proulx: Yeah, yeah, sort of that, that voice saying spell “sugar”. That is correct. They actually released a version of that, which I had, with all of the letters in braille, on the keyboard. And so it was a way to spell and it was a way to sort of, you know, learn braille and become more familiar with the braille letters by pressing one thing and hearing it say the thing.

Then shortly thereafter, I had an Apple 2 computer that I got used from a school board. I’m not old enough to use a new Apple 2, but I hadn’t used Apple 2. And I remember playing all those old texts, adventures and that fun stuff. What about you Speak and Spell it seems?

[00:40:34] Nikki Nolan: Speak and Spell. Yes. Speak and Spell. I remember doing Speak and Spell. My dad was really into computers, still very into computers. And we had this computer that was just green and black. Like the computer monitor was green and black and I don’t know what the computer was that we’re using, but I remember playing games on it. But I think the first, like real technology that I remember actively playing games on was a Jaguar. Do you know the Jaguar?

[00:41:04] Sam Proulx: The first 64-bit console. And they had those ridiculous commercials.

[00:41:07] Nikki Nolan: Oh, they had commercials? I don’t remember the commercials, but I remember playing Doom like a child. And just it is really bloody and graphic, but also, you know, every bit bitty. So like, it wasn’t like that graphic, but yeah. I remember playing Doom as a child on a Jaguar.

[00:41:27] Sam Proulx: Based on both of our total nonability at spelling, the Speak and Spell was obviously very effective.

[00:41:40] Nikki Nolan: Yeah. I don’t remember enjoying the Speak and Spell, but I remember enjoying the Jaguar. I remember also I loved recording things off of the television so I could memorize them. I didn’t really learn how to read until I was in 11th grade and so I was a memorizer. And so how I would do that is I had, just like a Playskool sort of recording system that had a microphone on it and I would tape the microphone and I would record TV shows.

[00:42:08] Sam Proulx: So, can you quote any of the tv shows you memorized back in the day? Give us, give us a quote.

[00:42:11] Nikki Nolan: No, but I did, I did memorize Ace Ventura and I annoyed everybody because I would say all the words. So yeah…

[00:42:20] Sam Proulx: Oh I did that with Monty Python but I was a bit older. I dunno what it is. I don’t know what it is with Python fans having to memorize it and quote it at the drop of a hat. There seems to be a phase that every humor lover has to go through.

[00:42:33] Nikki Nolan: Yeah, I would memorize, I would, I read and record a lot of comedy specials so that I could get better at timing and stuff like that. A lot of the things that I did with technology were to learn how to show up as neuro-typical. Learn how to get the timing, learn how to talk to people. I actually recently was talking with someone yesterday about this and realized how many things that I have done in my life to be perceived as a neuro-typical person.

It’s fascinating. Like I’ve been studying humans as if it’s a totally different thing so that I could show up. I’m hoping as I’m starting to uncover and unpack these things, that I will be able to show up more authentically who I am and less masked of a person

[00:43:19] Sam Proulx: Because George Carlin is like the perfect example of somebody who is obviously neuro-typical, no I’m, I don’t know. It just seems very interesting, the way that people are, it’s become more so right. We’ve become more and more manufactured, right?

[00:43:33] Nikki Nolan: Yeah.

[00:43:33] Sam Proulx: When on TV or radio or in the media, do you see real people being real? I wonder if that’s like a problem for this generation as they, as they sort of come up.

[00:43:44] Nikki Nolan: I mean, it was a problem for me growing up, who was a latchkey kid. Which this means that I was like popped in front of the television eighties child who just really, learned a lot from television for better, for worse, mostly for worse, you know, learned a lot of poor behaviors through television.

And that’s why I think it’s really important to have representation in the media and have people who have actual lived experiences making the media, because we do learn a lot from it. What completely off into left field there, but let me bring it back because we’re at the end of the episode. Is there anything that we didn’t talk about that you want to talk about Sam?

I mean, I could just have a conversation with you forever. I think we covered it all. I can’t wait for everyone to get to hear the first episode next week. I was going to say like it and subscribe but I think that’s only on YouTube. But absolutely make sure you’re following the podcast because it’s going to be really great if I do say so myself.

Nikki Nolan: So exciting. And you can find us at disabilitybandwidth.com/ and on Twitter @disability_band and on Instagram @disabilitybandwidth. And I’m sure we’ll get onto other social media. Thank you so much, everybody, for tuning in, and this is really exciting. You’re going to love it.

It’s great. And, yeah, Sam. Oh, (sound of knocking the mic) oops.

[00:45:06] Sam Proulx: I’ll be knocking over the microphone. This is great.

[00:45:12] Sam Proulx: 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. Feed music is created by Efe Akmen. 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/.