CDA ‑ Invisible Disabilities: A Panel Discussion
MAY 21, 2020
7:00 P.M. E.T.
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Nick Ng: All right. This is the main event. So this year marks the 9th Global Accessibility Awareness Day. Which is — we sum it up as GAAD. And according to their website, we have over 1 billion — one second. I've got to make my screen bigger so I can see my notes. Give me a minute. There we go. So according to the GAAD website, there are about 1 billion people worldwide with disabilities. The most common disabilities, there are four: Visual, hearing, motor, and cognitive. And this year at Accessibility Chicago, we have invited Fen, Keidra and SC to share their experiences with invisible disabilities. So to them, a really big thank you. Thanks so much.
And this panel will be less of a formal Q&A process. It's more going to be a conversation between the three of them. And occasionally, we may jump in with prompts. But we'll hold audience questions, please, until the very end. So now I'm going to pass this off to Karen who will introduce them all to you.
Karen Viado: Hi, everybody. Our first presenter or speaker is Fen Slattery. Fen is the accessibility liaise at Clique Studios. As a web engineer and seamlessly translates the needs of users into digital experiences that minimize barriers to access. As part of their advocacy work, they have spoken across the U.S. to audiences of all skill levels, been featured on many panels about inclusion in the tech industry and have spread their passion for accessibility in mentorship of web professionals. Fen is also a co‑organizer for the Chicago‑based Hivemind Press, where they write and publish zines. And you can find them on Twitter @sublimeMarch. Next slide, please.
Our next speaker is Keidra Chaney. She is a writer, essayist, nonprofit communications professional and co‑founder. She is a 2020 fellow at the ADA 25 advancing leadership institute, the only program in the country for emerging leaders with disabilities. She is a certified professional in accessibility of core competencies from the International Association of Accessibility Professionals. And you can find her on Twitter @kdc. Next slide, please.
And finally, we have SC. SC recently became a senior accessibility test engineer at VMWare. Before that, she worked with Level Access as a consultant with Fortune 500 companies to improve accessibility compliance. She trained companies to incorporate accessibility into agile workflows, says provided code remediation, and audited client products. SC has worked in the field for other ten years, is IAAP WAS certified and is passionate about the intersectionality of disability and diversity. You can find her on Twitter [Redacted].
Let's get started is if you would like to share. What is your invisible disability or disabilities? And for anybody who isn't familiar with invisible disabilities, what would you like them to be aware of?
Fen: The thing that's tricky about remote panels is I'm sure the three of us would be looking at each other in person and going oh, yeah, yeah, yeah. Nonverbal communication. So I'll just go first. [ Laughter ] Yeah. Oh, sorry, my Zoom everything rearranged when you turn off the slides. There we go. Okay, cool. So yes, thank you for the lovely intro. My invisible disabilities. So I have a super rare genetic condition called block Salsberg syndrome that affects a bunch of different stuff about me. You're going to laugh. It makes me very susceptible to viruses which is fun in this time of coronavirus. I am also autistic and have other mental illness. That's me.
Keidra: I'll go next. Yeah. So my disability is a degenerative cornea disease that causes blurry vision, double vision, extreme light sensitivity, ghost images, really crappy night vision, and a host of other eye‑related or visual impairments.
I think the thing that I would really like for people to know about this disability and similar ones is that when you talk about hidden disabilities and visible ones, especially with visual impairment, I often with this disorder felt even more marginalized in that eyesight is a — and this actually came up in Twitter earlier on today, and it wasn't me who started the conversation. But eyesight is a disability that is so accommodated through contacts and glasses that people don't really view it as such. But now within, you know, within the age of COVID‑19, people don't, you know, they may not be able to get their prescriptions as quickly as they would like. And so they — it feels more like a disability in a way that it wouldn't be when it's heavily accommodated. For someone like myself who is more than just what would be the average of visual impairment but not fully blind, I'm low vision, and it fluctuates depending on a whole bunch of different things. The fluctuation of invisibility disability I think is where a lot of people fall through the cracks if you don't present as a fitting a certain definition of disability to everyone all the time. People don't see it as always being there. And so because it fluctuates, people don't really know how to react to it. And I think the fluctuation is a big part of life with an invisible disability that doesn't always get talked about, and I would like to talk about it more today.
SC: Yeah. I'm definitely going to build off of that for sure. It's certainly a fluctuation. You know, not just for invisible disabilities but disabilities, in general. And, you know, I can speak to my specific invisible disability which is a bit frightening to admit this out loud to folks. Firstly because I have both ex‑ and current coworkers on the call today, so this is something that a lot of folks might not even know about me, which is the nature of invisible disabilities, right? So I have multiple sclerosis, M.S., and that's the primary one that I would probably discuss. And it means a lot of different things and also nothing, right? It's, like, a lot of different kinds of disabilities. You meet one person that has a disability and you've met one single person with that disability. So what it means to have me to have M.S. and I've written this down because one of the main things is I have memory issues. So if you meet me in person and I struggle with your name, it's not because I don't like you. It's not because we haven't had a very intimate personal conversation. It's just because the names is one of the things that I struggle with the most. I will recognize you. I will remember the conversation that we have. Yet the name, it always escapes me. So that's, like, that's one of the biggest things.
Cog fog is another one of those things that waxes and wanes, comes and goes. I might seem completely with it one day and then the next day it's, like, I'm not — and just I'm a little bit slower. It's just — it takes me a little bit longer to respond to some things. So those are the two major things with M.S. that affect me. There's some other things that come with it, too. Not to mention, you know, the actual medical things of going and getting infusions and those various different kinds of things. Eyesight. I have a little bit of a blind spot and a little bit of a color deficiency but not anything that's that big of a deal or anything that's super significant. Reading through documents. I actually use a screen reader which is something that surprises most folks because I am sighted. I can read. Whether it's my M.S. or it's my ADHD, it's just easier for me to get through a big verbose technical document actually turning on my screen reader and having that read it for me. So that just kind of gives you a brief overview of what it's like and the various different kinds of things that I'm dealing with with M.S. But definitely that waxes and wanes as I get to my infusion, I receive regular infusions, which is just an IV medication once a month. Once I get closer to that infusion date, I have a lot more symptoms, and you'll see these things kind of crop up. And I just had my infusion today, so I'm probably having the most symptoms today that I typically would have. But, yeah. That's definitely something that I think people who aren't familiar with disabilities just in general, they don't really take that into account that it's something that does change on a day‑to‑day basis. For me, I'm better right after my infusion. I'm super sharp. I'm very much with it. I have lots of energy. And then slowly, slowly, slowly throughout the month, I just get less and less energy and kind of just a little bit more scatterbrained than usual.
Fen: Yeah. That's a really good point that, like, over time and even in, like, different contexts, our disabilities might be, like, visible and not invisible or, like, not even present. Like, I mean, depending on, one, we might be intentionally, like, masking kind of hiding what we're experiencing but, like, I don't know. Like, in my own experience, like, talking about autism as an invisible disability, like, sometimes it's invisible. Sometimes it's really not. Like, there are times when you might be talking to me or eating lunch with me. And you can definitely tell that there is something different. It's not invisible. So, like, the nature of all of it is very fluid. It's not like a dichotomy.
Keidra: Right. And I think because disability tends to be viewed in the general public often as, like, a zero‑sum game where you're either completely disabled and helpless or you're not disabled at all and you're faking or you're over — you're being dramatic or you're, you know, there's so many things that with many disabilities, not most of them, they exist on a spectrum. And as we were saying earlier, you know, depending on what treatment you have that day or just how you're feeling that day, there are different symptoms that are going to come and go, and that's the reality for most people with disabilities, but that's not what is seen and especially in workplace environments where you're told to kind of bring 100% all the time that with invisible disabilities, that need to either not disclose or hide what you're actually going through, and I know that's happened in my experience a lot where I might need some, like, large type or I can't see something or I'm using a screen reader and I don't necessarily want people to know that I'm using a screen reader because there's questions about what that is and why I need it and, you know, what's wrong with me. And there are certain things that you just don't want to slow the workplace down, so you keep it — you keep it to yourself. You keep it on the DL. I think especially with invisible disabilities, the ability to pass and not disclose and the fear of disclosure and what it might mean is, you know, how many people end up falling through the cracks of employment if they feel like they can't disclose or they can't get the accommodation to do the work that they want to do. At least in my experience and others that I know that becomes a real issue if you aren't able to even ask for the accommodations that you need because of fear of not being able to keep your job or, you know, workplace harassment or just not really feeling that you will be seen as competent in your job. There is just a lot of issues that come into play.
SC: For sure. And, I mean, there's also the issue of needing to fight for the accommodation. I know that I've had that experience of trying to make sure that I get what I need and, you know, in the grand scheme of things, it felt very minimal like, you know, an ergonomic keyboard, for example, having to fight a really exhaustive fight for something that simple, you know. Let alone the other different kinds of things like working from home that we now have and I know that people have made that point of people with disabilities have always asked for work from home and have not been able to get that accommodation. And now, you know, it's a reality of COVID‑19. And everybody is able to have that. And folks in the disability community is just asking, why haven't we been able to have this all along? So, yeah. The amount of self‑advocacy to be able to first come out about it with an invisible disability but then to have the energy and stamina to be able to fight for the accommodation in a workplace that might not be accepting or might not be understanding, which I definitely have had that experience with other employers even before my diagnosis with M.S. So I don't know if that's something that, you know, either one of you care to speak about about trying to get accommodation.
Keidra: Yeah. I mean, I've been in at least two if not three different workplaces where my attempt at asking for accommodations. Left one workplace, I disclosed and I asked for accommodations, and the work that I was being assigned started getting magically moved to another coworker because I was seen as not being as effective or competent or as much of a high achiever as I was because I didn't disclose. Even though they said that wasn't the reason, it started as soon as I disclosed to HR and asked for accommodations.
In another workplace, I asked for accommodations and had them taken away from me because it was disruptive to the team. Yeah. And, you know, being — yeah. If you can pass, don't disclose, and I did for a while until it got to the point where it — I couldn't anymore. I had some real bad experiences in terms of disclosing and then having that used against me. And then even more benign things that — where coworkers would kind of make jokes about things that I needed when I wore — if I had really bad light sensitivity and would wear shades in the office and people would laugh at me for wearing shades in the office or why I needed a screen reader to read things back to me. Just, like, the kind of things that in any other situation, like, I would say, well, I'm going to go and report it. But I didn't want to disclose. And then I did. It's hard. I've been very lucky for the past couple of years. I think honestly when I moved to the nonprofit sector, it was much better for me than when I wasn't in the nonprofit sector because the places that I work have been — even though there's a long way to go with accessibility within nonprofit, when I did disclose, they did — they did the work to give me the accommodations that I needed and didn't question it. And I wasn't mocked. And I wasn't immediately seen as being, like, not as competent because I disclosed.
And at least for me, and I think there's — not to bring it into this, but I think as a black woman, I had a different — there are different levels of what I had to fight for in a nonprofit environment that I was already probably seen as, like, I had to work harder to be seen as competent. So adding — disclosing my disability on top of that added more possible stigma. And so that makes it even harder to disclose if you do have a marginalized community and you're already fighting to be accepted in a work space, if you have an invisible disability, you're more likely not to disclose because you're already thinking that your job is not, you know, your job is on the line if you do disclose. So there's just so many issues that come into play with that and just creating an environment where people can disclose. And not just to HR but that the workplace, like, there's a spirit and culture of universal accessibility and an understanding and acceptance of the different disabilities that are out there within work spaces that isn't just about HR but just about the culture itself being diverse and accepting and accessible that, like, I don't think we're even close to being there yet, but at least we're talking about it now. And we're being up front about it and the fact that we can be on a panel and be up front about invisible disabilities that we wouldn't disclose in other places is, you know, really meaningful for me.
Fen: Yeah. Hell, yeah. Thank you for saying all that. It makes me think of, too, you were mentioning a lot about, like, workplace and things like that. And in addition to that, it makes me think of just, like, medical contexts as well. Like, the whole do I disclose this disability that is irrelevant to the medical treatment I'm getting? Like, my hand is broken. I promise this has nothing to do with it, you know. And, like, if this is a medical professional, I've never met before, do I tell them about this? And are they — if I tell them, are they going to decide, oh, well, your problem isn't actually that your hand is broken, blah, blah, blah. Like, it's also something I deal with, like, as a transgender person. Like, we have this concept known as the trans broken arm syndrome that, like, as soon as you reveal you're trans, oh, well, the reason your hand is broken is because you're trans. Like, oh, you know, your digestive issue is because of hormones. Like, stuff like that. And it's a similar sort of, like, disclosure fatigue kind of thing. Like, if I tell them I have this mental illness, are they going to go, oh, well, you're faking this. You're just, you know, crazy or some other slur here, right?
Keidra: I love disclosure fatigue and I'm using that. I'm yanking that from you.
Fen: Hell, yeah. My therapist made that up two weeks ago. It is all yours.
Keidra: Yeah. I will credit you, but I love it, love it, love it. Going to use it.
Fen: You're just, like, tired of having to explain shit all the time.
SC: For sure. And, I mean, there's both the disclosure fatigue as well as the intersectionality that we all — we all have on the panel, we all have some kind of other minority status other than just the invisible disability that we have. So, you know, just having to come out so many different kinds of times as, you know, I'm read as different kinds of races depending on who I'm standing next to or who's standing in front of me. So just whatever privilege and/or drawbacks that has which has been a very interesting thing to try to navigate of sometimes being read as white and sometimes being read as a brown person and being very confused about what that has to do with anything, frankly, a lot of the times. And then, of course, I'm also queer. So, you know, continuing to come out and having varying levels of acceptance for any of these things. And I actually love to in a quote from a well‑known YouTuber who talks about her disabilities and is also a lesbian, people accept that I'm gay but not that I'm disabled. So that just resonates with me as somebody who has an invisible disability and has to continually come out with all of these things that I have, you know, being a person of color, having a disability, and also being gay of, you know, which are you going to accept of me, and which aren't you going to accept of me? So, yeah. I definitely — all of this resonates especially the — I'm sorry, what did you phrase that? The disclosure fatigue.
Fen: Disclosure fatigue. It's a good word. I think we should write a paper on it.
SC: Yeah. It's amazing.
Fen: I'm just exhausted now. I don't know. [ Laughter ]
Keidra: Good night, everybody!
Nick: Would this be a good time to do a prompt, another new prompt?
SC: I think so, yeah.
**Fen:**Yeah, yeah. Redirect my brain from me. Oh, I'm so tired. Line of thinking. So, yeah.
Nick: I'm going to drop the prompt in the chat. The question, how does your experience shape how you create your work on the web?
SC: I think I'll flip the question, frankly. My work on the web actually shaped how I view my own disability, which maybe I'm fortunate in that regard that I started with learning about accessibility work before I identified with any kind of disability and before I was diagnosed with MS certainly. So, you know, I learned how to use a screen reader before any of this happened, and I just discovered that using a screen reader is so much easier for me to digest information. And then just kind of understanding the different kinds of disabilities that existed and understanding the community and just learning from everybody else has really kind of shaped my life as opposed to my life shaping what it is that I do on the web. And it's just given me just so much more awareness and understanding in that regard, and now I'm able to approach it from my own experiences. And therefore able to become so much better of an advocate for those disabilities that I don't personally have and just being a lot more compassionate and empathetic of being able to explain it of trying to approach it in a very humanistic way. So whenever I'm trying to explain to somebody why they need to make a certain change to code or something needs to be changed of just approaching it from — it doesn't need to be changed for assistive technology. It needs to be changed because a person can't access what you are trying to build. So, you know, just removing the technology behind it, removing, oh, a screen reader can't access it. I'm saying, no, a human being, a person, is unable to access this thing that you're making. So, you know, really kind of internalizing that for my own self and being able to advocate in a better way.
Keidra: Yeah. I think I have a slightly different experience because until — I was, like, on the web all the time. Like, I did digital strategy and writing. So I was, like, you know, clocking 12, 14‑hour days always looking at a screen. Until my vision loss. And I didn't know what was out there. I didn't have access. I didn't know about assistive devices. I didn't know about screen readers. I didn't know about those things, and I didn't really have until I found a community of other folks with low vision and with the syndrome I have and other visual disorders who would say, hey, have you heard of a screen reader? I'm, like, I had no clue. And so, like, learning how to advocate for myself and learning — basically coming from nothing and then going, oh, wow. I guess I need this now helped me learn how to advocate, and it made me more passionate about, like, the experience that — especially working in digital strategy and social media, and so much of it is not really accessible, and there are certain things that are just taken for granted like it's super image‑based and it's super image‑based and we don't have, like, image descriptions or alt descriptions or whatever if you're video based and you don't have captions, and there's so much, like, community that is built online that isn't accessible, and the idea that there are a whole bunch of people who are missing out on these communities that are built online because the content isn't accessible.
And so learning and advocating for myself when I needed to continue to participate in those communities made me more passionate about making sure that everybody with different disabilities across the spectrum to be able to have the same experience that I was still fighting to have. But I think not having access and the knowledge and really knowing what was available to me in terms of assistive devices and in terms of just what would make something accessible in the first place made me super determined to learn about what was out there, not just for myself, but for other folks because, like, if I didn't know, there's a whole bunch of people who are maybe afraid to disclose or maybe are, you know, they don't know what they need because they don't have the privilege and the safety to ask for it and get it. And that, like, that for me is what drives me every day. And I think I might cry, but I'm not. That's what drives me every day to know that there are people who need it, but they don't know what they need because they don't have the ability to find out what they need. And that's what really drives me to do the work that I do to make digital spaces accessible.
And in the same way, because it's not just enough to be accessible. It's to have a similar experience. Like when you're missing out on the experience that brings people together, like it's not an also and. It's not, like, oh, then and you person, you know, deaf person, you blind person, you autistic person. You don't get to experience this the way everybody else does. We get to have our kind of fun. You get to have your fun over there. And it's, like, with online spaces but also with, like, music venues and artistic venues. Like, it shouldn't be an experience that disabled people get to have over there in the corner. It should be an experience that we all get to enjoy together in the same way and have the same kind of community and the same kind of connection. And it's not an also and or an afterthought.
Fen: Hell, yeah. What you said about — just what — the really good point you made and evoking the idea about, like, people needing things but not even knowing it's an option available to them. Like, really, really hit me because, like, a thing I've personally gone through. And also it's something I see a lot in the, like, you know, accessibility web professionals kind of space amongst pretty much folks who are, like, abled and working in accessibility like the idea of, like, oh, well, I mean, yeah, but we can leave it like that because the screen reader user, they can just navigate there this other way, and it will work just fine. Like, they can just put their screen reader in this other mode. Or, like — I'm in consulting, and I've had like, an argument with clients before. We're, like, oh, well, if they just zoom the browser in this different way, it works. So as long as they know — you know, then it's fine. Like, and just the assumption that one, everybody who has these needs, like, has the digital literacy to know how to do that to just even know it's, like, there, right?
And also has, like, the access to the tools or, like, the assumption that oh, you know, yeah. If you're blind, well, of course you can be using a screen reader. Like, not everybody can use a screen reader for a wide variety of reasons, you know. And a lot of us don't even know that things are out there that we could use to make our experience better for ourselves, especially if you're not — if you have the kind of disability where, like, you're not aware of the way it impacts you. Like, this is super an experience I've had with my autism and this kind of gets to my answer to this question. But, like, there were things that, like, you know, I've been autistic my whole life. I didn't know I was autistic until, like, six months ago, right? And so up until then, there were a lot of things that I do and, like, on the web and in my day‑to‑day life that I didn't think I was doing these because I'm autistic. I thought I'm just bad at stuff or lazy or can't pay attention, you know, other negative self‑thoughts, right? And so I didn't perceive those as being accessibility needs. I just saw them as oh, I'm just bad at stuff. It's just a quirk I have. So I would have never thought to, like, seek out, like, something if it were framed as, oh, if you're autistic and you have a problem with this, use this thing. Like, I didn't think of that, you know? Instead a lot of the things that in retrospect were things I was doing because I needed them from an accessibility standpoint.
Like a good example. I've realized a big thing that impacts, like, how my autism impacts how I use the web is how I, like, I end up, like, kind of focusing on making sure I'm reading everything. And, like, Reddit is a big example where you have a big list of things to read or Twitter. I have a really difficult time if it's not linear. And so for ages, like, I have different tools and browser plugins I use to allow me to navigate with just the keyboard easily through those kinds of sites. And I've told myself for years, oh, well, I'm just — I just want to be cool. Like, I just do this because I like it. It's just fun. But the answer is, I freak out if that browser plugin isn't working and I can't use Reddit with just a keyboard. Like, I hate it. And there's been a lot of other things like that for me where I didn't know it was an accessibility need I had. And I wouldn't have thought to look for it. So, yeah. I guess to that question a little bit, I made actually a whole Twitter thread about this. But for me and, like, my career in, like, web accessibility, it's been a lot of kind of like what SC's experience was. I actually pretty directly realized I was autistic and have all these accessibility needs because of my work in accessibility. Like, I wouldn't have realized that all these things about me and these weird problems I have are autism if I hadn't been actively working, like, with autistic people and making things accessibility for autistic people. I would have had no idea. So, yeah.
Nick: I'm going to take a moment to ask how we're all doing. Are you all doing all right? Doing good? We're good? Let's do another prompt. This is more of a general context. What makes you feel included or excluded in the way you interact on Twitter, et cetera?
Fen: Well, for me, one of the things that makes me feel very included — sorry. That's my don't forget to eat dinner alarm that just went off. Autism. For me a really big one that can make me feel included and feel super excluded when it's not present is contact warnings. Both as a result of, like, trauma history and mental illness but also just, like, I can have strong reactions to strong emotional content because of autism. If, like, things especially, like, Twitter and other social media, if they don't have a content warning, who! It spins me off into a bad place a lot of the times. And if somebody's doing something just as simple when they're tweeting about, oh, I don't know. Some crappy thing a politician said as an example, right? Here's a crappy thing somebody said about trans people, right? If they put a content warning, like content warning, trans phobia, like, that makes me feel so safe and included, and I can engage with things. And when things like that aren't present, it makes me feel like especially if it's somebody that, like, I know, like a mutual on Twitter. It makes me go, what the heck? Like, do you not care? Like, do you not know that I'm going to have a really hard time with this? Yeah. It's one of the things off the top of my head.
SC: I know that you'll resonate with this one, Fen, because we've talked about this privately, but dietary things is one of the biggest things (Indiscernible). I mean, there's so many instances, like, trainings or lunch and learns or things like that that that you cannot leave work, and yet they haven't taken the fact that I don't even certain things into consideration, and that's not — that is directly related to my MS. So it actually is an accommodation in my case. It's not just, like, I don't prefer to have dairy. I'm specifically avoiding dairy to avoid inflammation which then reduces the amount of symptoms that I have with my MS. So it's specifically related to my health, and yet if I don't have somebody that's going to accommodate my dietary needs, and then I can't leave to go get food, I mean, what am I supposed to do? Just not eat? And I've definitely had scenarios like that that, like, I'm locked into some kind of work thing, and my needs haven't been taken into account. And so therefore I don't know, what am I going to do? Just, like, go find the one bag of chips that's in the kitchen? I mean, it's just — it's just inconsiderate as a person, and it doesn't — I shouldn't have to justify it with my medical needs to have that accommodated. I shouldn't have to tell you how this affects me and my invisible disability for that to be a thing, you know? So that's one of the biggest pet peeves that I have.
Keidra: Yeah. Fen, I am totally — actually, yeah. The content trigger warning issue is huge for me. It means a lot to me when people do include them for different issues. My big pet peeve — and it's not necessarily web connected — but it is a big, big part of a lot of spaces and especially in nonprofits is during trainings or conferences or breakout sessions, when people will do note taking or drawing on a whiteboard and they don't have any other way for people to read or look at the content that's being taken on the whiteboard, and — or there's, like, the presentation is done, and the font is too small, and there are no other options. There's no printout with large type. There's nobody reading anything out. And people just write on a whiteboard and don't read things out as they write them out or they have presentations with really small type, and they don't give people with low vision or blind people any other option to read or see what's going on. And that happens pretty much everywhere I go, even places that are really trying to do their best because people don't think about it, and they don't ask until somebody does ask.
And I think just any time there's a presentation or a breakout session or whatever, just making sure that there is something for the people who may not be able to see what is on the board at all to be able to see what's going on. And the same thing goes for having captions and sign language and a mic. Oh, my God, please have a mic. And I'm not even, like, hard of hearing or deaf, but just have a mic, like, guys. Just please. Please — like, you're not loud enough. You need audio because people need to hear. And just having those options. To me that's like bare minimum 101 accessibility in a space. And it's so often not noticed or seen until somebody brings it up. And it's just — it's really unfortunate because I feel like there's a lot of spaces especially in the nonprofit sector where there's talk about diversity and inclusion and making spaces available for different types of people, and you don't even have the bare minimum of communications for people with disabilities to be able to participate fully. If that's not on, like, the first thing on your checkoff list, then, yeah, you're not making a space that's diverse and inclusive. Hard stop.
SC: Yeah. And to just kind of build off of that, I mean, I feel very fortunate with the digital accessibility meetup group that we have at a11ychi, as one of the co‑organizers, I already know we already built in a lot of these things without people asking. We all three of us went to the negative things of the things that bother us, right? And I think that's very easy for us to do because it just happens on a regular base, these microaggressions of things that other people might not even think about that occur to us on a regular basis that we might make noise about it and we might say something that annoys us. But internally, we're just dying inside when this happens. So just switch it up and say the things that make us feel included and of me personally, not having to ask for these things, not having to identify myself as having a disability, and this is why I'm asking for it, of just having these things included, the microphones, the captions, these various different things. Because I both reason and also read those captions. So just having that — you know, I might not be able to understand somebody regardless of whether I can hear them or whether I can see them.
And just having the accommodations without having to ask for it, and then also having people listen to my experiences and either not trying to — I know it's well intentioned but trying to just come in and say, you know, everybody has that, or everybody feels like that. Just listening and hearing what I'm experiencing where I'm coming from and just kind of checking in and having a friendly ear about that kind of any of the issues that I do choose to disclose. You know, it's really nice when I have my infusions, just somebody checking in and being, like, oh, how did that go? How are you feeling? You know, I never expected it. I would never ask for somebody to do that. But it's just, like, an extra nice thing to do if I'm not ignoring the thing that you have to go do medically. But I'm just checking in, you know. I'm just seeing how you're feeling. So it seems so small, and it just seems like a person‑to‑person sort of thing. Those kinds of things are definitely the things that make me feel more included as opposed to, oh, I need to raise these alarms every single time I'm feeling crappy or every single time I don't feel included. Just having that built in.
Fen: Yeah. That makes me think of a thing that makes me feel included. It might — it might sound kind of silly but, like, let the fact that I have a disability be boring and not boring as in don't accommodate me but boring as in, like, oh, okay. Sure. Like, I care but I don't. Like, a really good example, again, it's, like, in the physical space at work but, like, I have a lot of sensory, like, oversensitivity issues. And so I have, as SC sort of alluded to, we've talked about dietary stuff a lot together. I have a really limited amount of things I can eat because of, like, sensory issues. And I have a really difficult time eating around people a lot. So, like, at previous employers, it was, like, a weird big deal that I would, like, not want to eat with people and would kind of go off on my own. But where I work now, it's, like, the most boring thing in the world, and no one cares that, like, yeah, maybe they all eat together in the lunchroom, but I go sit somewhere else and eat. And if anything, it's treated as oh, where'd you go for lunch today? Oh, that sounds cool. I like that place. Like, it's boring. It's boring that I'm doing something different in a good way. And I like it. Make me feel included by making it seem like a total normal everyday thing that I have a different need. Like, whatever.
Keidra: I have to say real quick, the fact that more places are making image descriptions, like, normalized and just a common part of putting out content makes me super happy. And it makes me really happy as somebody who works in digital strategy when organizations have content that they put out that the image descriptions are already written. That makes me happy as hell! Like, every time I see that, I always shoot off a thank you to whoever sent me that content, the fact that they already wrote the image descriptions out is amazing. That's a little thing. But the folks that do it, I just have so much appreciation for. It's just a tiny thing that I love.
Fen: That makes me want to go give my content team at work, like, a high five because they just do that magically, and it's so nice.
Karen: All right. We're going to start with Q&A session. I have the first question from Traci. Their question is, is there anything COVID‑19 related that has altered or changed how you function digitally, especially with Zoom or other video communications platforms?
Fen: I would like to jump in and talk about COVID. Because as I mentioned, I have a disability that specifically makes me more susceptible to viruses. So I have really strong opinions about the COVID situation. I've been quarantining for way longer than other people have because I can get this virus way easier, and it will be way harder on me than folks who don't have an issue like I do or who have other immunocompromised things. So it's less about, like, how it's impacted how I use the web and more about, like, I'm slightly living in a ha, ha, ha, welcome to my world. I've always been here. I've owned this very fancy, like, mask since way before COVID. I've had hand sanitizer since way before this. So I guess I think — I can't remember which of the two of you brought this up before but, like, the idea of why couldn't we have always had this? Kind of the zone I'm in of, like, now we're all worried about viruses. So, yeah. It's given me a lot of, like, emotions around, like, people being careful or not being careful. Because I'm immunocompromised. Yeah. That didn't really answer the question. I just have a lot of feelings. Somebody else should say something. I'm sorry.
SC: Yeah. I don't know that it's — I feel like I've been fortunate in my regard that my last jobs have had a remote ability, and so had I not had that, it would have been changed that for me just because I didn't mention but also there's a fatigue aspect, like, a physical actual fatigue that sometimes happens. And so working remotely is always something that I ask for as an accommodation. And so had I not had employers who would accommodate that and already kind of had that built in, then it would be a much bigger deal. You know, I just started with VMWare, so I actually had no idea they already had that built in. So starting a brand‑new job and having that as a given is a really nice component to have. You know, I've been fortunate, and maybe that's why I've selected the jobs that I've selected and always ensuring that I had that remote ability.
I guess the only other thing that's really affecting me with COVID is just with the cognitive aspect, the ritual of going into an office and having a different space does help me to cognitively be in work mode a little bit better. It's kind of a weird thing to acknowledge that ritual is an important part of a cognitive issue of being able to get in the right mindset to turn on my work brain. But I'm really kind of missing that aspect of it, of going into a physical space and having a place where I can be. You know, we can try to recreate that at home, but only to a certain degree. What am I going to do? Go walk around the block to mimic my commute to work? I mean, I could. But, you know, trying to get into work mode is maybe the biggest thing that's affected me with COVID. And I'm sure that it's affected other people as well as trying to make that transition into, oh, I'm not at home. I am at work. So I guess that's the one thing that I could say about how it's affected me.
Keidra: Yeah. Like, SC, I have been working remotely for about the past five, six years now exclusively. So things haven't really changed that much for me on a work level. What I am noticing and thinking a lot more about is as I socialize more, like, there's — especially Chicago. Chicago has such a very kind of rich live music and live performance community. And so I've been seeing a lot of events try to move to Zoom and to virtual and online. And I think about the accessibility issues for making these events enjoyable for everyone. Because I feel like workplaces kind of have a long history and experience and best practices with that. But, you know, live performances, live music, they don't. And if this is going to be a new normal, if this is going to be something that we'll lean on in the future, I'm thinking about how — how to convert live music, live performance, and make those play areas for people as accessible as work areas can be virtually and what it would take to do that. And that's where my brain is. Not necessarily that my experience has been all that different, but I'm just — my head is kind of wrapping my around what that might look like and what virtual event accessibility looks like COVID and beyond.
Karen: I have another question from Steve. I really like the term disclosure fatigue and trying to think through how to explain it to others. Could we get a succinct definition to share?
Fen: Sure. I can do that since I was the one that introduced it. Let's see. My succinct definition. Disclosure fatigue is a reaction to needing to come out or disclose or reveal a part of yourself over and over and over again and the sort of burnout almost associated with it.
Karen: All right. Next one is from Anna M on Twitter. What are your tips for both workplaces and event organizers to help the invisibly disabled? And for invisible ones, how would you like to do the asking or disclosing thing? It can be really awkward to ask if someone is disabled if it's not 100% obvious. So mostly about how to make workplaces and events more welcoming to everybody, including the invisibly disabled.
SC: I feel like Fen and I literally have an entire presentation on just that.
Fen: We literally do. I have a blog post about it. I have — I've yelled about it on Twitter. Yeah.
SC: We could spend forever talking about that alone.
Fen: It should be a separate panel almost.
SC: It really should. Briefly, though, I think an environment of inclusion does help somebody regardless of whether or not they want to disclose and just taking people at their truth. You'd be surprised, the different kinds of environments that I've worked in and folks that tapped themselves as disability professionals who don't embody that inclusion atmosphere. So, you know, if you're going to walk the walk, talk the talk. And regardless of who you're around try to be mindful of the way that you're discussing all different kinds of disabilities, especially being mindful of those invisible disabilities that you might not be as familiar with. So when talking about mental issues, you know, trying to avoid certain words that are problematic such as crazy, just as an example, and just the language around it goes a long way. So trying to have more inclusive language, I think, fosters that kind of an atmosphere that somebody feels more comfortable disclosing. Yeah. I'm sure that Fen can jump in and talk about it and also Keidra, feel free to add to that.
Fen: I put some links in the chat because it's easier than me trying to say them right now. Here's my really — my spicy take for the day. If you are running an event or you are — it's a workplace, and you have any budget at all, like, you have money for this event, not like it's a nice free thing you're doing. But if you have any money, hot take, you should be paying somebody who has disabilities who specializes in making sure events are accessible and having them, like, help you do that if you don't know how. And not ask for — I mean, I don't mean to say don't ask us this question in a panel. But, like, I've had people who, like, companies and, like, big conferences ask me to give me — give them my, like, expertise on how to make an event inclusive for free. Compensate us for our labor. Hire people with disabilities as almost, like, a sensitivity consultant or an inclusion consultant. Like, if you can, pay us. But there are lots of good free resources, too.
Keidra: Yeah. Everything y'all said and also do it early. Don't do it the day before or two hours before the event. Like, it should be baked into the cake of event planning and organizing. It should be as much a part of event planning and organizing as booking where it's going to be. Like, that should be one of the first things that you're talking about. And I feel like don't think of it as an afterthought not thinking of accessibility as an afterthought goes a long way because it so often is. It's, like, oh, and then we have to do this. Like, if it's as part — as much a part of the event as, you know, mics and presentations and food and all the things that they're always obsessing and thinking about, then accessibility should be a part of that. It should be one of the first conversations, definitely not the last. And that would be my suggestion.
Fen: Hell, yeah. Building on that even more, if you don't have the money for, like, live captions or the money for inclusive food options, you don't have the money to put on an event. Like, I've had event organizers tell me that before. Like, oh, we're sorry. We don't have the money to give an additional food option that is a common accommodation. Or, like, oh, we're sorry, we can't afford to have some lovely person who's doing live captions. But you have all the money for all this other stuff, like, come on. If you can't afford that, you can't afford your event. I'm sorry. Womp. Try harder. Get more sponsors. It's actually not that hard.
Karen: Our next question is related to that. What can those of us that work in the field so what can people do with bringing awareness to an empathy for these various needs so that they can take at least one step closer to fruition? And especially concerning budget restraints. What are — sometimes we can't get budgets, do research with real users as the first step even if we want to. So what else can be a building block or at least a first or second step to get them more ready to take these types of changes? Is that clear?
Fen: Was that in the context of, like, events or in, like, a general sense? I wasn't clear. Okay. I have — I'll just point out and then let someone else answer. One of the links I shared, it's specifically about how to have an accessible and inclusive event with no budget at all. So just sayin'. You could read that if you wanted. I don't know.
SC: I think also, too, in addition to that for sure, understanding what affects different kinds of invisible disabilities. And I know this would — something like distractions, for example, crosses a large boundary of different kinds of invisible disabilities. So making sure that you're educating yourself on distractions and what that means, whether that is designing a product for the web or actually going to an event space and scoping that event space out and trying to figure out, okay. Are there any distractions? Are there weird things like flashing video games which we actually have had at one of our events which personally has driven me bonkers, you know? And just kind of various different things like that, distractions specifically, just focusing on one category but certainly there's many other different kinds of categories that you can focus on with things that would affect folks with different kinds of diversity and would affect those with invisible disabilities as well as just, like, all things accessibility, it affects all the people in the audience who may or may not identify with having a disability. So just trying to educate yourself with those various different kinds of categories and then trying to figure out certain ways to account for that might help when you're planning a product or an event.
Attendee: Hit the phone.
Keidra What?
Fen: Someone named Dan, it looks like you accidentally unmuted yourself.
Nick: I'm going to mute Dan for now. But if you intended to be unmuted, just let me know.
Karen: And I have clarification on the last question. It is more about how to get leadership on board. So if you're not in a position to make these decisions, how can you help move your leadership of your organization in the right direction?
Keidra: I can maybe make a quick comment on that. I feel like I have never in my work experience been in a specific leadership position to advocate for accessibility, but I still do. Like, if you have the ability to make a comment about making space for accessibility, making room in the budget, like, it's not comfortable. It's not fun all the time. But if it you are in the room to bring up making space in the budget, making time, making a project plan to bring it up, even if it's not for an existing budget it's, like, well, okay, it's too late for that. If you're in the room when a project is being planned and you're there at the beginning, being that person to speak up about it is how you make change. And it doesn't come immediately. And you may get shut down. And you may get to the point where the leadership says we don't have room for it. But the more you bring it up, the more people will listen and change.
And I've been in more than one position where I've been the annoying accessibility bug about different projects. And I've been very lucky that I've been listened to. But I think if you have the space to do it, even if you aren't the person who can give the thumbs up on it or the green light to make it move forward, if you're that person who's always bringing it up and building in those opportunities, building in that space for a budget, building in a partner who might be able to fund something. Like, if you're that person and you keep bringing it up and you're, like, this should be a priority, then that's where the leadership begins. It doesn't always exist from up top. Sometimes it is from bottom up. And that leadership does come from managing and leading from below and, like, using your voice and your ability to advocate to be that person to say that this is important and this shouldn't be an afterthought.
You know, it's not always the leaders that make that change. It's often the people who are just really dogged and, you know, somebody who's always going to be that voice. And to bake it into the cake and to — part of the reason why I got the accessibility certification that I did is that I could have that as a way of saying, look, I'm an expert. Listen to me in meetings. And in spaces where, like, people like titles and people like certifications and people like knowing that you did something official. So here I am. I have something official. Now listen to me. And that means a lot for a lot of folks in a lot of spaces. So I think wherever you can be that person to advocate, you don't always have to be the project lead or the project manager to make space for that. And it may be a process that doesn't happen all at once. But it can happen over time.
SC: I think I'm going to add that to my bio. Here I am. I have something official. Listen to me.
Fen: Put it on a business card.
SC: Yeah, I know. Just to build off of that, I think, you know, a lot of the accommodations, selling it to the higher‑ups, it still rings true the same way that we sell accessibility to leadership. So, you know, still convincing folks that it's the right thing to do, that it's going to attract diverse talent, and then if you have to bring the shtick of saying it's the law, you know, we can still go back to WCAG conformance items that specifically speak to different kinds of neurodiversity issues and compliance even though WCAG isn't the best, there's a lot that's just AAA. So, you know, that's considered, oh, that's cute. That's nice to have. But it's not — it's not a firm requirement of the law. So you can kind of argue that to a degree. But I think just — I think, A, that will change. But B, continuing to reinforce, you do need to have these accommodations in place if they're not going to take the carrot if they're not going to say, you know, it's nice to do. It's the right thing to do. It's going to attract more diverse talent than it is still the law regardless of whether we have a specific conformance item to try to shoot to or not.
Karen: So if there are no other questions — you can unmute yourself at this point if you want to ask yourself — ask your question yourself.
SC: I think I saw one in there about us discovering our invisible disabilities later in life. It was somewhere in the chat, but I'm not seeing it.
Fen: Oh, yeah, yeah. I saw that one, too.
Keidra: Yeah. I see it. Should I read it?
Fen: Yeah, go for it.
SC: If you could.
Keidra: Yeah, yeah. Many of you recognized your invisible disabilities as adults. What do you think could be done to help recognize disabilities earlier in children?
SC: I can talk about that a little bit. Partially my invisible disability doesn't manifest itself in children. That's something that is very commonly manifests in women, firstly. It's a 2‑1 ratio. And secondly, it occurs somewhere around late 20s, early 30s. So there's no preventing the fact that I had this later in life. But I will say that I do have other different invisible disabilities that I didn't necessarily touch on. Certainly awareness is a big deal. You know, I wasn't diagnosed as ADHD until I was in my 30s. So, you know, just talking about it, more awareness about different kinds of invisible disabilities, you know, like this panel and talking about the things that we go through. And there's so many more amazing folks out there on social media that are starting to open up about their invisible disabilities and what they go through, what they experience, the different kinds of things that they need. So just continuing to talk about it much like everything, really, is just going to help other people recognize that they might have an invisible disability, that they can go talk to their medical professional about or they might recognize it in somebody else that they might try to help in various different ways, you know. So just really having these conversations, I think, is the most important thing that we could do and help people realize that there's something going on earlier. You know, even that said with my disability being something that is — manifests later in life. I went seven years probably having it and nobody recognizing it. So definitely these conversations and awareness is crucial.
Fen: Yeah. Especially, like, trying to — both, like, normalizing these kinds of disabilities but also specifically making people aware of what is and isn't normal. Like, it's specifically in the scope of a kid, says right? Like — oh. Somebody on an iPhone is not muted. Sorry, it's just, like, really distracting to me. What was I saying? Right. Having an idea of what actually is and isn't normal. So a big known thing about autism is that for a long time, it was thought to be only something that, like, one, that only kids had, ha. And two, a thing that, like, only men had. And there's a lot of really great research and literature about how it is super underdiagnosed in people that aren't cis men. So there are a lot of us who, like, had we been, like, young boys, we would have been immediately diagnosed with autism. But instead, like, how we're socialized growing up, we're, you know, people don't realize that we're autistic. But also to my point of, like, knowing and accepting, like, oh, this behavior this kid has, it's not necessarily, like, bad. But it's not normal. And knowing that and that it's okay, but to maybe seek support. Like, there's a lot of support I could have had as a kid that would have helped me out a lot. But instead it's sort of shamed and viewed as, like, oh, this is bad.
Like, I think I brought this up earlier, right? Oh, I'm just lazy. I'm just bad at this thing. But to give other examples that are maybe less around, like, judgment kind of things, I'll draw from an example. I think my wife is even in this call, but giving an example that's hers, like, she has sleep apnea. You could call that an invisible disability. She didn't know for a really long time that, like, sleeping for eight hours a night but not feeling rested isn't normal. Like, we romanticize especially like in teens in the U.S. and, like, college‑age kids of, like, staying up all night and being tired and pulling all‑nighters. So, like, she had no idea that it wasn't normal to have these symptoms. And until she was aware that, oh, not everyone is like that was she able to get treatment and, like, save her life, pretty much. So it's, like, making things seem acceptable and okay but also just being aware of, like, no, actually, most people aren't like that. Let's get you some help. You know what I mean?
SC: And also building on that a little says bit, which I feel like was mentioned in the comments. You know, in the medical system is built around men, white men usually as the primary standard for everything. And this is, you know, years and years and years of research. So we're only now starting to undo that medical issue of white men on considered the norm. And this is, you know, this is literally killed people, women, people of color for years and years and years. So, you know, not only is the shift happening in the medical community, but also the social shift that we're talking about. So, you know, recognizing that there is a very real disparity in research and the medical community as well as the social shift that's happening right now and society being more accepting and recognizing that there's a societal model of disability. You know, we've chosen to have buildings with stairs as an example, as I'm sure we've talked about before in our meetup group. You know, we never required stairs to be a thing previously until we built buildings and then we built in a way that other people couldn't access buildings, you know. So what we're talking about is kind of that same way of there's the medical issues that we have had in the past and so therefore we might not have been able to get diagnosed until now as well as the societal issues of not feeling comfortable with disclosing and not feeling comfortable letting other folks know that we might have an invisible disability that needs to be accommodated.
Keidra: Yeah. I'm going to build off of both of y'all. My disorder was not diagnosed. It was misdiagnosed for several years until I got a proper diagnosis. And it took several doctors and me saying to several doctors, like, this isn't right. My vision is still really bad. Rather than oh, you're just good enough. Like, you can see well enough. It's fine. It's just a really bad astigmatism. It's, like, no, it's worse. I literally can't see. And it took going to several doctors to really — to get it diagnosed properly. And I think destigmatizing the fact that you're still not better might be a part of that. I think one of the things that happens with illness and chronic illness is that, like, the question of how you doing? Are you better? Sure, I'm better. But you're not better because people don't want to hear if you're still not better. And especially with kids, I feel like listening to kids, if a kid is saying I'm still not right, I still don't feel right, something's not right, and recognizing that and responding to that, like, that's not always easy. We don't do it with kids or adults. But I think especially with illnesses and disabilities, being, like, we're taught to not really push against professional medical advice and especially with doctors and especially if you are a marginalized person and a doctor tells you you're done. This is what it is. Now go home. You're taught to not really push back against that. But that's where a lot of misdiagnosis and, illnesses and fatally often where things get missed where somebody's, like, I'm still not feeling better. No, you're fine. You look fine. It's okay. To listen to people when they're still not better. And that's where getting second or third or fourth or whatever diagnosis, if you have the ability to do so because there's the issue of having access to, you know, and to be able to afford to go to multiple doctors and get, you know, a different diagnosis from different medical professionals. But to listen to folks, if they're not better and to take them at their word, I think Fen said that earlier and to be mindful of that is, you know, there's so many people who don't have an official diagnosis for their invisible disability, but they know something's wrong. And the diagnosis may not happen yet because there's so much going on that, like, you need to have multiple tests that people can't afford. But something's not right. Like, and understanding that and accepting people at their word even if the diagnosis isn't official and there's not an official letter from a doctor or whatever that you get from somebody saying that this is what's wrong, understanding and listening and accepting that and making a space where people feel comfortable with not being okay even though they still want to be at the table and they still want to participate. Like, you don't have to be fully okay to participate and to feel accepted and to feel like you can participate in a particular space. And that's what, like, accessibility does is say you don't have to be fully healthy or have a clean bill of health or whatever that means to be able to participate, just to listen to folks and be aware of that and mindful whether they're a child, an adult or whoever.
Karen: Thanks, everybody for your questions. And again, you can probably reach out to our panelists on their Twitter. And to close out the night, I wanted to ask the panelists if you guys had any closing comments that you wanted to share. Just to end out the night.
Keidra: I just think all of y'all are awesome. This was a wonderful panel, and it was so great to hear everybody's stories, and I'm just so glad to be able to talk about this kind of stuff. Anyway. Thanks for listening. Thanks for sharing your stories. This was a great moment.
Fen: Yeah.
SC: My dogs are picking this very moment to be very loud. [ Laughter ] I apologize for that in advance. But I do appreciate everybody showing up and talking about this. I mean, it's pretty rare that we have the chance to talk about invisible disabilities. And it's still something that the accessibility community is trying to understand how to design for and how to build for. So I think these conversations are important. So I would just say keep having these conversations and definitely again, thank you all for listening.
Fen: Yeah. Same thing. Thank you all for helping this to be a space for the three of us were able to feel safe enough to say the things we said, and that can be really hard to do to, like, do what we just did and also to leave space for people to do that. So I appreciate that. I guess the main thing I'll say is that, like, just be aware of the fact that, like, a lot — what I would encourage you to take away from this and take forward from this is that the three of us talked a lot about our experiences with disability and a lot about our experiences about how our disabilities intersect with race and how they intersect with gender, how they intersect with like, queerness and other things like this. And I would encourage you to think about that and take that forward and remember that — I'll say it, that question about, you know, kids being diagnosed early. You probably get three really different answers if this were a panel of three cis‑gender white men answering your question, you know? So I guess take that forward. Let it turn over in your mind. Think about that. That this is an intersection that you can't separate.
Karen: All right. Well, again, thank you to our panelists. You guys are amazing. And thank you to everybody who came out tonight for Global Accessibility Awareness Day. Yeah. Again, our next meetup is going to be next — in a couple weeks. You can find it on —
Nick: June 9th.
Karen: Go to our meetup site and we'll send out messages about that. Nick, do you have anything you want to close out on?
Nick: No. Just a huge round of applause for them for Keidra, Fen and SC. Thank you so much and thank you to all who have come tonight.
Fen: Thank you, everyone.
Keidra: Thank you all.