Michelle: [00:00:00] Welcome to our next episode My name is Michelle Frechette. You have most of you know, who watched our vlog. And today I have my very good friend here. Maryann Reissig , who is visiting us today, um, in place of Allie. Hi, Maryann. Thanks.
[00:00:16] Maryann: [00:00:16] Hi, thanks for having me.
[00:00:18] Michelle: [00:00:18] I said one of the things I wanted to talk about on our vlog is ableism . And how people who have disabilities, whatever that disability is, um, can sometimes face issues in public and jobs in lots of different places. You and I were talking beforehand that, um, neither one of us has ever not gotten a job because of a disability, which is awesome. Cause I know that there are people out there who, for whom that’s true, has been true, that they’ve not gotten jobs because of the disabilities that they, that they face every day.
[00:00:51] But you and I haven’t had that experience, but we have had other experiences.
[00:00:55] Maryann: [00:00:55] Yeah, for sure.
[00:00:56] Michelle: [00:00:56] And so I wanted to talk a little bit about, um, ableism today now. Um, you’re not private about the fact that you have a disability. I’m not private about the fact that I have disability. I have fibromyalgia, I, um, you know, carry extra weight.
[00:01:09] And there are times when I just can’t walk. Right. And I use a cane or I even have a scooter or, you know, for example, in airports and things where there’d be a lot of walking, I use wheelchair service. And that helps me a lot. So, and I know you deal with this.
[00:01:24] Maryann: [00:01:24] Yes. Similar. Yeah. So I have cerebral palsy and I’m on the mild end.
[00:01:31] It’s it’s just affects my lower body. And you know, my gait is definitely, I’m not your average gait, so, um, yeah, but that is, um, diagnosed when I was about two and a half, I think something along those lines. So, um, yeah.
[00:01:51] Michelle: [00:01:51] So sounds like you’ve dealt with a lot longer than I have for sure. Cause fibromyalgia doesn’t usually present itself until later on for sure.
[00:01:57]Maryann: [00:01:57] Um, and yeah, it’s interesting because, um, just as I get older, um, I, I’ve learned so much more about this, this. As, um, as someone aging with cerebral palsy with CP it’s, it’s, it’s very, um, it’s been, uh, uh, you know, a struggle cause you’re like, I can’t do all the things I used to be able to do, you know?
[00:02:21] And, um, so I’ve been learning a lot about, uh, you know, how to deal with aging and the aging process, um, with, with when you have, you know, constant, um, different kind of movement of your body and what it does and that kind of thing. So, um, if anybody. You know, is also dealing with that. There are lots of, um, it’s hard to find resources sometimes, but I’ve been, um, finally been able to, I could probably even give you a list of good places, um, to, to go and, and just do read about it.
[00:02:52] And. You know, kind of you’re like, what do I do with this? You know, so yeah, sure.
[00:02:59] Michelle: [00:02:59] Um, this last year, I would say actually the last three years I went from, um, being able to walk , albeit, you know, painfully and, um, out of breath through an airport to just not being able to do that. And just like being just beside myself, because I thought I was going to miss a flight because it just seems so far to walk and for the first time in 2018, I used wheelchair service in an airport and it was like, Wow. The, like the lights came on, like, why wasn’t I doing this before? Because it’s, it’s a free service, but I tip people. So it does cost a little bit extra, of course, because if somebody is going to push my ass from one end of an airport to the other, they deserve a little something extra.
[00:03:43] Maryann: [00:03:43] Right. I do, I do get that, but I also, I have a bit of a problem with tipping for, for those services in the airport. Um, I feel like, yeah. If you have to use those services, you may not be able to afford that. Sure. I really, um, I I’ve had a couple of, kind of, um, awkward. Moments with people who were expecting tips or, and I didn’t have money on me or, you know, I kind of left the situation feeling bad and I just wish we could change that, um, culture of tipping sometimes because maybe, maybe if maybe they should pay those folks the right wage, right.
[00:04:25] You know, for the super important service that they provide people like I’m always so grateful, um, for, to the same thing. Like I’m always so grateful for the service. I’m always so grateful for how that I receive. Um, yeah. So, so I don’t know.
[00:04:41] Michelle: [00:04:41] And I don’t always tip as, unless somebody who’s been super kind to that kind of thing.
[00:04:44] I had people who were pushing wheelchairs in an airport, treat me poorly. Yeah, and I like isn’t this, your job? Like, aren’t you supposed to help people who can’t walk the length of the airport? Um, but one fellow was just so rude about pushing me that he, asked a passenger to help him push me up the ramp, which was mortifying to me.
[00:05:08] Oh, absolutely mortifying. I’m like, you’re asking a stranger, it’s not his job. And now I’m feeling like really, really embarrassed. And, um, and when he got me down to baggage claim, he stood there. Like I was supposed to give him a tip, but I just glared at him. Like no fucking way, buddy. Yeah, you don’t need to make me feel,
[00:05:32] Maryann: [00:05:32] I think I have the same experience with that same guy.
[00:05:35] Michelle: [00:05:35] Honestly. Yeah. I was just like, you don’t get to treat me like shit. And then standing there with your hand out, like, I’m supposed to give you money for that, because now you don’t, you’re not going to get reimbursed for, for treating somebody poorly. But yeah, no, I think it’s just like not having that.
[00:05:54] Maryann: [00:05:54] There’s a lot of, um, there’s a lot of blame. Like you see in, in, in society about, you know, people, people walk into situations with bias or what have you, what they’re bringing to the table is not always what is really in front of them. And sometimes it’s hard to like, get past that, to kind of swim past that jerk, you know, and yeah, for sure.
[00:06:27] Michelle: [00:06:27] No, I’ve, I’ve had people like, look at me weird, like, why is she in a wheelchair? Like her, her legs look like they work or things like that. Or, you know, you, you get to, um, just thinking about the whole airport thing. Like they get to the point where like, You’re going to go through security and they’re like, well, could you walk through there?
[00:06:42] And you’re like, well, yeah, I could walk 10 feet. Right? Like, and then people look at you, like, you just got special service, you got pushed into the beginning of the line. Like they are there in a hurry. So like, you get, you do get some preferential treatment. Right. Um, but, but trust me that the rest of my life does not make up for that.
[00:06:58] Maryann: [00:06:58] Like. Right. So it’s not like the whole, I’d rather be in line with you, you then not being able to stand for long periods of time. Right?
[00:07:10] Michelle: [00:07:10] Exactly, exactly. Right. Yeah. So, but, um, But we did a, I did a poll yesterday on our Twitter account where I asked, like, what do you think that people hear the most who deal with or who are disabled or deal with chronic illness or are chronically ill.
[00:07:25] Maryann: [00:07:25] And I had read that, I think, yeah.
[00:07:27] Michelle: [00:07:27] So one of them was like, well, you don’t look sick. You know, another one was like, you know, all you need to do is eat better. Another one was, um, Oh, you just need more exercise. You know, I thought of another one since then. I’m like, well, have you tried essential oils?
[00:07:42] Maryann: [00:07:42] Yeah, that’s my favorite or, you know, growing up. I, I, so, like, I can tell you some funny, many things about like when I was a kid, I remember, um, people wanted to pray over me and to touch me, just cause thinking that if they prayed over me that I would get up and walk normally, or, you know, I shouldn’t even use that word, but, you know, typical. Yeah, really hard.
[00:08:09] I’m really trying to get that out of my vocabulary because it has a purpose, but it’s kind of, doesn’t really work in our world anymore. I try to tell my kids, I’m like, we’re all, we’re all, you know, we’re all unique and everybody has a, you know, try to use the word, you know, typical situation or average, I think sometimes.
[00:08:31] Yeah. And just, just try to try to get that out of the. Of the vocabulary, because we all bring something to the table, you know, and we all, and, and I was when if you see me in a wheelchair going through the airport, like, you know, nothing about me, you know, you don’t know that, you know what, and I don’t, I don’t owe you an explanation either, you know?
[00:08:58] So sometimes because a lot of times you feel like you have to explain yourself, Or, you know, and, and I’ve had my family like explain me to strangers and I’m like, and like afterwards, I’m like, you didn’t have to do that. You know, like we don’t owe anybody, anything, you know? Right. And, um, and I guess . But if I had had this conversation with you 20 years ago, my, my whole stance would be different, you know?
[00:09:25] Um, but I am where I am now, you know, and you have a lot of life in between and, um, you learn what you can handle and what you can’t. And, and I mean, I feel like I have I am surrounded by so much love. And support and you know, in my life, I I’ve really built, you know, something wonderful. I, and I’m so proud of that.
[00:09:55] And I’m so happy to have the people around me that I do, you know, and, and it’s hard. Some days are tough when you’re just like, oh, you know, there’s, the pain is up here and I just want to be left alone. Please don’t touch me again. Exactly. And, um, but you know, We all have those days. Everybody has those days, right?
[00:10:15] Michelle: [00:10:15] Yeah. Now I know you’re kind of a web accessibility expert. At least you’re my guru expert on web accessibility. But instead of talking about web accessibility, which is a huge topic and it’s all over the place, I want to talk about, um, tech accessibility when it comes to physical accessibility at conferences, especially so a few years, a few years back, we had the last WordCamp US.
[00:10:39] Last one in person . Yeah. And I specifically asked, it was the first time it was in St. Louis. And I specifically asked if all of the rooms were going to be nearby each other, because if I was walking, like I had at the last WordCamp U S, which was in, uh, Nashville, I knew I wasn’t going to be able to deal with the whole venue because it was so far to walk just to lunch and things like that.
[00:11:02] And I was assured that everything is really nearby. Well, My, you know, between the time that we were planning it. And the time that I was actually going, my walking had de- you know, what’s the word I want deteriorated, deteriorated enough that I really did need a scooter. So I, we rented a scooter for that, and it turned out it was a good thing because what’s nearby to an able bodied person is not nearby to somebody who looks at, you know, a hundred yards and thinks that’s a marathon. Yeah. You know? Um, and so, you know, when people are thinking about putting together an event at a venue, thinking not just about, you know, are there elevators and are there curb cuts? Yes. Those are great things to take into mind, of course, are there bathroom stalls that you can use a wheelchair? Those are great things to keep in mind, but if you have events that are at one end of the building, and then somebody has to be at the other end of the building in five minutes and they’re walking with a cane or they, they have a limp or whatever it is, and a walker and they’re not using a rolling device.
[00:12:10] Yeah. It’s Herculean. Right. And so, um, I’ve dealt with that. It is so exhausting.
[00:12:18] Maryann: [00:12:18] Yeah, I’ve definitely gone to a couple of conferences that were like that, that it was all, it was all marketed as like, oh, it’s all in one building and it’s all, but like to get to lunch was a half a mile walk in the same building, you know?
[00:12:32] So it’s, it’s definitely, I’m looking at it. We you know, we kind of talked before about, you know, any kind of physical barrier, um, that, that. You see, and like for doing WordCamp Rochester, you know, figuring out the venues for that. And, um, I felt. Fortunate in my situation, because I could actually say, okay, is this too far away?
[00:12:59] You know, coming from my own experience. And, um, we had some of those issues too. And like, so, so the one thing that I made sure that a lot of, uh, in somebody else may not have done it. I made sure I had a golf cart to take people to lunch that needed it, you know, like, and that wouldn’t have been available if I wasn’t one of the organizers, you know?
[00:13:21] So, um, it’s, it’s those things like just keeping those, those little things in mind when you’re, you know, looking at your physical space and, and seeing, um, you know, Looking at it through somebody else’s eyes that may not be able to get from A to B in that five minutes, you know, exactly.
[00:13:43] Michelle: [00:13:43] Another thing that I’ve encountered at WordCamps as a speaker is a raised platform without a ramp.
[00:13:50] So, and, and to some people it’s like, it’s only two steps and yes, I can do two steps, but two steps is still difficult, especially at the end. Right. I mean, I could fall anybody can, I mean, let’s face it. Any, any able-bodied person or whatever typical person could still fall. But yes, those of us who can’t lift their legs as easily, right.
[00:14:10] My toe could catch on that bottom rung. And it has, um, at an Airbnb, my toe caught on the bottom rug, um, for WordCamp Buffalo a few years ago. And I went down hard on those steps and I still have an indentation in one of my shins from hitting that I hit it so hard, but, um, Right. And you don’t want to see that you don’t want to do that in front of a room full of people?
[00:14:32] Maryann: [00:14:32] No, that’s what we always talk about. Um, he was like, are you okay? Right. I’m like, yes, just my dignity is bruised.
[00:14:39] Michelle: [00:14:39] Yes exactly my take also for sure. But the blood will go away, but the dignity is hurt forever. But if you do, if you do have a raised platform, are you sure that none of your speakers need accessibility?
[00:14:52] You know, and yes, we asked that question now, but, um, But sometimes people still don’t think about what that means for me. Uh, I got to WordCamp , um, Boston, and there was just a one-step up onto a dais , but I would have had to stand for 45 minutes to deliver my talk. And so I asked for a chair, I always asked for a chair just to be able to sit down and do my talk, but now the podium was higher than my head.
[00:15:17] So how was I supposed to do that? So they, they ended up moving the podium to the floor. Which then was at desk height for me, but it was like all these accommodations in front of a room full of people when they knew that I had an issue and they waited till the very last minute to make adjustments was still embarrassing.
[00:15:32] Maryann: [00:15:32] Right. Yeah. Right, right. So not embarrassing to me. I’m like do it up, do what you gotta do. I don’t have a problem with that at all. And I, and I think that I honestly, I, I. I think it’s getting better and maybe I’m just, do I have rose colored glasses? I don’t know. I think, I think there is, um, that if, if we were talking about this 40 years ago, when there were no know cutouts in the, um, in the sidewalk and the curbs, you know, if the ADA or, you know, any I loved Judy Human.
[00:16:10] And all the work that they all did, you know, to help people like us going forward. And, um, she’s like my hero. So anyway, but just. You know, making that, that we’re, you know, we’re not hidden away anymore, you know?
[00:16:29] Michelle: [00:16:29] Hmm. I guess maybe it wasn’t so much that that was embarrassing. Certainly the thing in the airport was embarrassing.
[00:16:34] Right? When, when somebody grabs a stranger, um, it just that it throws your whole life thinking I’m about to give a speech. I was about to give a talk and everybody’s watching in the room, and now we have to take three minutes or four minutes. To make adjustments at the front. It just throws your gait off, not your physical gait, but like your mental, you know, your mental thoughts off, so, right.
[00:16:58] Maryann: [00:16:58] Yeah. Absolutely. That’s unfortunate. That’s unfortunate when those kinds of things aren’t taken into account early enough, I think. Yeah, that’s a really good, uh, that’s a real, like, I will remember that going forward, you know, doing any kind of, um, Event planning kind of stuff. It really is. And, and, you know, folks really appreciate it too.
[00:17:20] And the, and even the people who don’t necessarily. Um, need an accommodation after the fact, they’ll say, wow, that was such a great venue because everything was so close together or it was so easy to get in out in and out of the rooms. Like it benefits everybody, right. It really does. So it’s not just the people, um, you know, like you and me who really need it.
[00:17:42] Everybody benefits, you know, it’s not just. Um, just for folks like you and me, that’s why I say the, the benefit is wider and, um, people like they didn’t even know that how good it could be, you know, when you make something really accessible.
[00:18:03] Michelle: [00:18:03] Yeah. No, I think that’s true. And the more you can include people, the better the experience.
[00:18:09] Maryann: [00:18:09] Right. So if you and I were excluded because we couldn’t attend an event like that they’ve missed out on some pretty good people that they could have talked to. Absolutely. Yes, you are pretty awesome. And there’s so much like getting that kind of just, just learning about other people’s experiences and learning from, I mean, there’s a lot that you have to offer to the world, you know, that, that we have to offer to the world and yeah.
[00:18:39] Uh, yeah, I, I am much more, um, you know, the, the, getting, getting the experience with all different walks of life, all different, you know, I. I, I can’t stress how important it is for, you know, to have that inclusive piece, that any kind of event you do, you know? It really, I mean, did I never remember seeing, like, even like when the president’s talking now, like they have, uh, uh, or, um, or the governor, anybody that they’re talking, they always have a sign language interpreter.
[00:19:12] Like we never saw that growing up and now it’s like it’s at every speech and I just. It’s. I just, I love it so much. It’s so much better because you’re, now you can talk to everybody in their native language, you know, like what works for them. And I just, I love to see that. And it’s, um, and there’s no special door.
[00:19:39] You have to go in where there’s no, like any, you know, that it’s just all there, you know, for everybody to. You know, to, to enjoy whatever it is, you know, like I, I feel like it just makes everything, um, everything better. Yeah.
[00:19:57] Michelle: [00:19:57] Yeah. There’s there are no second class citizens.
[00:19:59] Maryann: [00:19:59] Yes. Right, right. Exactly.
[00:20:02] Michelle: [00:20:02] What’s one piece of advice you would want to give to people in general, not just, um, you know, not just organizing events and things like that, but when you think about people with disabilities, physical disabilities, especially. And you think about the general public what’s one thing you’d want the general public to think about when it comes to other people with disabilities.
[00:20:25] Maryann: [00:20:25] I think that like having an open mind, first of all, that, that the person in front of you, they’re a person and they have a life.
[00:20:38] And I I’ve gotten away from, I mean, growing up, there was a lot of, like, people would assume I had, you know, a developmental disability cause physical equaled, you know, mental or some kind of delay or something, you know, like, and I mean, it, as soon as I talked to them, then that kind of went out the window, but there was that bias there was that preconceived notion of, of who that person was in front of them. So I think my advice would just be, have an open mind and, and, and, and acknowledge the person, you know, acknowledge the person’s humanity in front of you, because at the end of the day, that’s what we all are.
[00:21:25] Michelle: [00:21:25] Absolutely. I think that one thing I would add to that is not every disability is visible.
[00:21:33] Yeah. You know, so I I’ve seen stories of people who are amputees. Get reamed out by people for parking in handicap because they get out and walk and then they pull up their pant leg and they’re like, you don’t think this is a disability? Yeah. Like Tanium leg.
[00:21:51] Maryann: [00:21:51] Yeah. Right, right. The whole, you know, that they just, that those assumptions are made that, that, you know, or they think they know you or they think they, you know, I don’t know.
[00:22:03] I don’t, I’ve been touched many times without. Because people thought they were helping me. And I’m like that that’s one other piece of advice. Like don’t touch someone in public. I mean, now it’s way different now. Now we’re in, you know, COVID world. Like don’t don’t if you want to offer help. Awesome. But don’t touch anybody unless they, you, you give them like you have explicit permission because I’ve been given help before that was not helpful, not helpful, but I didn’t need it and I didn’t want it. And, and it was, it was it, those can lead to some very awkward moments and, and I shouldn’t ever have to feel bad. Right for somebody else’s, you know, lack of understanding of how to handle a social situation, you know?
[00:22:58] Michelle: [00:22:58] Exactly. Don’t push somebody else’s wheelchair don’t, you know, assume somebody needs help standing up. Don’t grab somebody who’s blind. Cause you’re going to show them the way, like none of those things are okay.
[00:23:10] Maryann: [00:23:10] Yeah. I know. Um, and also, I just want to say like, at the end of the day, if you see somebody at the end of the day and, and like I’m exhausted, you know, like the, the amount of energy it takes me to do something is, is higher, um, than you would think.
[00:23:30] And, and my, you know, some days I just I’m like, okay, it’s time. I need some quiet, you know, and give that person the space for that.
[00:23:38] Michelle: [00:23:38] So, That’s great advice, because as soon as we’re done recording here, I’m going home and sit on my sofa
[00:23:46] Maryann: [00:23:46] and, and you deserve it. It’s been a long day. It’s right. It’s nine o’clock at night.
[00:23:50] Michelle: [00:23:50] I’ve been here for 12 hours. It’s time, baby. It’s time. Yeah, Marianne, thank you so much for being so open to talking with me today. I really appreciate it. Thanks everybody out there.
[00:24:00] Maryann: [00:24:00] Oh my pleasure.
[00:24:01] Michelle: [00:24:01] Thanks for being here and everybody out there, we’ll see you next week on the vlog. I have no idea what we’re going to talk about, but we’ll figure it out in the meantime, it will be great.
[00:24:10] We hope this has been helpful. And if you have ideas for us, things that you’d like us to include, just let us know at underrepresentedintech.com . Thank you. Bye.