Title:
Two Wheelchairs, One Marriage: The Questions People Actually Ask Us
Subtitle:
Alycia and Marty answer the questions people ask about being a married wheelchair-using couple, from travel and accessibility to love, independence, intimacy and who is really the most stubborn.
Transcript:
Alycia Anderson: Welcome to Pushing Forward with Alycia, a podcast that gives disability a voice. Each week, we will explore topics like confidence, ambition, resilience, and finding success against all odds. We are creating a collective community that believes that all things are possible for all people. Open hearts, clear paths, let’s go.
Welcome back to Pushing Forward with Alycia. I’m Alycia Anderson, your hostess with the mostest. Feeling way more mostest than I was last week, so that’s good. But we have been having a couple, few heavy weeks around here. We’ve been talking a lot about hospitals, procedures, caregiving, all the things that happen when life decides to throw you a curveball and changes the plan.
And so today, Marty and I, he’s back, ‘ cause he’s been my caregiver with the mostest the last few weeks. We wanted to have a little fun together today, lighten it up. What do you think, babe?
Marty Anderson: Sounds slightly concerning.
Alycia Anderson: It might be. But recently we’ve shared a little more about what it actually looks like for two disabled people, you and me, two wheelchair users, to navigate life together. I did a post last week, and there was so much interest. It went mini viral. And it’s had so many responses that I thought we could do a little Q&A fun thing today because people have been asking things like, “How do you travel together?
How do you help each other? What happens when something isn’t accessible? Who asks for help first?” Ooh, that’s a good question. ” Who gets more annoyed by bad accessibility?” I already know the answer to that one. “And who’s more stubborn?”
Marty Anderson: Again, I feel like we know the answer on that one.
Alycia Anderson: Who was it, you or me? Let’s not get ahead of ourselves. But after almost 15 years of marriage, we’re celebrating our wedding anniversary in December. We have stories, lots and lots of stories. And the one thing that we’ve learned is that being disabled and a couple is not nearly as complicated or I’m gonna air quote, “tragic” as some people imagine.
Most of the time it’s actually pretty normal and probably a little bit boring. So our version might involve two wheelchairs, accessibility, negotiations between accessibility, and negotiations just between ourselves, and sometimes a ridiculous amount of planning and creative problem-solving.
And occasionally looking at each other and go, “All right, how are we gonna make this happen?” But most of the time, I’d say, what, 99% of the time we’ll figure it out. So today we’re gonna talk about all those things that everybody’s been asking us as a disabled couple, the funny stuff, the frustrating stuff, the surprising stuff, and probably a few things that we disagree about.
Probably more than a few things, actually. Are you ready, Marty?
Marty Anderson: Always ready.
Alycia Anderson: All right. Okay, let’s do it. Let’s see how it goes.
Marty Anderson: Hey, why don’t we have a few rounds of fun questions like who’s most likely to? Who’s most likely to be the stubborn one out of us?
Alycia Anderson: You?
Marty Anderson: Okay. Who notices an accessibility
Alycia Anderson: Wait, we have to talk through it a little bit though, don’t we?
Marty Anderson: Sure So who’s
Alycia Anderson: more likely to be stubborn about asking for help?
I think it’s me.
Marty Anderson: I agree that it’s you.
Alycia Anderson: Yeah, I think most of the time you’re encouraging me to ask for the help, to lean into other people, and I grew up just wanting to do everything on my own, so it’s really hard for me to ask for help. And sometimes you ask for help for me in place of me doing it, and then I get really uncomfortable.
Marty Anderson: And upset.
Alycia Anderson: And upset sometimes.
But you don’t really ask for help all that much, and we don’t really need all that much help as far as our day-to-day. But, I’m hoping that we can maybe ask for more help in collaboration and all the things that we’re doing with work and things that we may not be perfect at or understand and trying to find out solutions to, types of things. Ask the next question. Who notices an accessibility problem first?
You.
Marty Anderson: Ooh, I’m always pointing them out, aren’t I, babe?
Alycia Anderson: Yeah.
Marty Anderson: There’s another spot that they should have done this or that, right?
Alycia Anderson: I think your advocacy voice with that is stronger than mine. And I even sometimes will see an accessibility problem but know we can figure it out. Like for instance, when we get on shuttles from the airport. One of the biggest challenges that we have traveling is when you land at an airport, to go get a rental car you have to take a shuttle.
And shuttles for Marty and I both are triggers because they’re stressful situations. They’re never consistent customer service. Sometimes the ramps don’t work. Sometimes the people that are driving the shuttles don’t wanna pick you up. You can tell, it’s very obvious. And so before we get on the shuttle, as we’re rolling from the airport to the shuttle.
Marty Anderson: shoulders get tighter, she starts showing wrinkles on her forehead. And all of the sudden I’m like And she keeps saying things to me like, “You’re not gonna do this, are you? You’re not gonna do that, right?” And I’m always like, “Yeah, babe, don’t worry about it. It’s okay. Everything’s fine.” But when the most frustrating is either, A, the shuttle is totally packed and we’re there waiting and as people are
As the driver’s putting down the ramp and everything else, 25 people shuffle into the shuttle and all sit down and try to, cut … And even though we were there first waiting for the shuttle. And then we get in there and then the bus driver’s like, “Okay, now time to strap you down.” And we get that, some people prefer to be strapped down and some people this and that.
But generally we’re like, “Hey, we’ll just hop over onto the seat and we’ll hold our wheelchairs and everything is fine. We don’t have to go through this 25-minute strap down.” so we’ve had a mixed a bag on that, haven’t we? Sometimes the drivers are like, “Okay, cool.
Awesome. I don’t have to work so hard,” we jump on and go. Other times they look at us and go, “Oh no. You’re gonna be strapped down.” And those guys are the ones that really get under my skin, aren’t they, babe?
Alycia Anderson: Yeah, that’s when it turns into a more of a transactional thing where the human customer service experience is taken out, and we’re treated like a check box on a disabled checklist rather than humans that can collaborate with how to make things work. And there’s been some really uncomfortable situations, almost to the point where we’ve gotten off the shuttle a couple times ’cause the service was so bad and made us feel so alienated.
Yeah.
Marty Anderson: It’s okay for all you able-bodied folks to jump onto the tram and just stand there, but not okay for us to roll on and just sit there. What’s the difference of an accident in a tram where you’re standing there and you take a tumble on your face, or we’re sitting there and we take a, a stumble onto our back? the difference? So anyways, let’s move on to the next one.
Alycia Anderson: So it was a good one though, ’cause that it was a good talking point because travel is a scenario where we’re constantly running into things together with two wheelchairs that we have to solve for. And that, that is one, for sure. So.
Marty Anderson: Let’s go back to an easy question. Who’s most likely to take longer getting ready?
Alycia Anderson: That’s definitely me. But I am a woman, and I am a professional speaker, so I need to look good on stage. So I need to be stage ready all the time. And my disability’s more complex than yours, like internally. So I deal with a lot of other things, catheters and medical supplies and, changing things and maintaining all of that.
And on top of just having three surgeries, there’s even more for me to plan to get ready for the day. So I think partially it’s from me just being a woman and wanting to get all jazzed up and look good and feel good. But also my disability is more complex from a preparation standpoint.
There’s a lot of steps I need to take to have … to be ready for the day and to maintain it throughout.
Marty Anderson: You do take longer, and I was just being funny.
Alycia Anderson: Here
Marty Anderson: we go. Who’s more likely to say, figure it out”?
Alycia Anderson: Me.
Marty Anderson: You?
Alycia Anderson: Yeah.
Marty Anderson: Okay,
Alycia Anderson: No? Why do you laugh?
Marty Anderson: I don’t know. I’m always saying we’ll figure it out but that’s true. We both do. That’s why we’re a team. That’s why we work together. We figure it out together.
Alycia Anderson: I think that’s part of like adapting to life with a disability is we’re constantly having to figure things out all the time because the world’s not built for us. And the only way to participate in life is to figure out new ways to participate or we’re stuck. So I think that’s fair. Like we can both say we figure it out all the time.
Marty Anderson: Yep, yep. Who gets more irritated when someone parks in an accessible space?
Alycia Anderson: I don’t really think either of us get that irritated when somebody parks in an accessible space. I think that we’re… Like, of course there’s the one-off moments where you can tell that somebody’s taking advantage of it, but I think overall, especially in the work that we’ve been doing from a accessibility and inclusive standpoint we are well-versed and educated to know that disability doesn’t look just one way, and that there’s over a billion people worldwide that have disabilities.
So if somebody has a non-apparent disability and is parking in a spot we’re educated enough to know that they very well could have an invisible disability. I do think the one thing that people with non-apparent disabilities that don’t use mobility equipment should be cognizant of when they’re parking in a disabled spots, is they should use the spots that don’t have the space for the mobility…
Extra space for the mobility aids to be able to be put together. I do think that is something that needs to be differentiated, because a lot of people with non-apparent disabilities park in those spots that are specific, have the lines, the diagonal lines next to the spot, and that is so somebody with a wheelchair, a walker a ramp.
Marty Anderson: A van.
Alycia Anderson: Yeah. So we use that spot to have enough space to get our equipment out, and I don’t think that there’s enough education on that. And I think that it’s a kind and polite thing to do that if you have an invisible disability, that you’re picking the right spot if there’s options to leave those ones open for mobility device people.
Because otherwise we get in a real pickle of not being able to park or get out of our car ’cause there’s not enough space.
Marty Anderson: That is a hot topic though in the disability community, this disabled parking thing. And I don’t think we’ve had enough talking about it and maybe some new solutions. you know how they have different colored disability parking passes? Why don’t they have different colored parking spaces for disabled parking? then why don’t they put maybe some disabled parking in the back of the parking lot than in the front of the parking lot.
Alycia Anderson: I do think, to your point, that all, all those policies and laws need to be looked at again because even just the mere amount of spaces does not accommodate the amount of people that are identifying as disabled now and really leaves a lot of room for inaccessibility because of that. So I think all of those things need to be looked at again.
Marty Anderson: Yeah, that’s great. That’s great. Who carries more disability-related stuff when we travel?
Alycia Anderson: Wait, me?
Marty Anderson: Do you?
Don’t we just carry the same.
Alycia Anderson: We don’t carry the same. We both carry wheelchairs, but then I have a whole half a bag full of catheters and medical supplies.
Marty Anderson: Oh yeah, that’s true.
Alycia Anderson: So definitely me.
Marty Anderson: Okay, cool. But sometimes I carry crutches and a brace maybe if I’m lucky, even though I haven’t worn one in years. But anyways. Okay. who’s more likely to speak up when something isn’t accessible?
Alycia Anderson: You?
Marty Anderson: I don’t know. That’s a good question. Maybe me, maybe you, maybe both of us at the same time. Or maybe we both just shrug it off and just don’t even say anything.
Alycia Anderson: I think it’s, I think it’s dependent on the situation. It’s situational, right? If you wanna speak up and I think there’s certain situations where there’s always gonna be educational opportunities, like going into a restaurant and there not being any accessible bathrooms other than maybe going in through the back door of the kitchen and using the employee bathroom.
And speaking up about those things, about what a terrible consumer experience that is is an educational opportunity. I think if we run into small things that could be better like staying in a hotel room and everything’s accessible other than a table top height or something like that, that we’re not even using or something like that.
So I think it’s situational.
Marty Anderson: Yep, for sure. It’s definitely situational, and I think that I speak up more about the feeling of accessibility. Like you mentioned maybe having to go around the back and go in through a special door or some kind of entrance, and I’m always bringing up like, if you invite someone to your home, do you expect them to go through the backyard and climb through a window? Or do you create a nice grand entry for them and put all the nice stuff out for them to see on their way in? It’s about a feeling. It’s about that belonging feeling. It’s about being invited, right? So let’s keep this rolling, and let’s switch it up to a little bit of what more people have asked and wanna know about us. We’ve gotten some questions in throughout the years and one of them is how do two wheelchair users actually help each other? You want to just take a stab at that one?
Alycia Anderson: I want you to take a stab at that one first because I think it’s more obvious for me how you help me.
Marty Anderson: Yeah. No it, it’s the same question to me how do two people help each other? It’s just natural thing to do to help each other when you love each other, when you care about each other. As a man, I’m always wanting to open the door for you, to hold your chair while you transfer things that make it easier for you in respect to carrying the bags or pushing this or that.
You’ve this new way of me helping you out where you grab onto my back wheel or my back bar and get a tow everywhere we go, which is of a, unique to our situation. But, what do you think? How do we help each other outside of the norm?
Alycia Anderson: I, I don’t really think of the physical things. I think more of the like emotional support, when we’re going through different challenges that we might run into, whether it’s accessibility or health things or even just like not challenges that aren’t even related to our disability, just marital challenges.
I feel like the way that we help each other is, the way that you really help me is that I know that I’m not navigating things alone. And I think Those are, like, some of the most powerful tools that you can have in a relationship, is feeling the partnership that you’re there for each other.
That one, when one is down, the other one’s helping the other one lift back up, and vice versa. And so you help me physically with a lot of things, but I think knowing that somebody’s on your team the way that you are on my team, it makes me feel braver in the actions that I can take in my life, whether it’s work or personal or all the other things.
So I think that is, for me like the biggest.
Marty Anderson: Can you? Go ahead, I cut you off.
Alycia Anderson: That’s okay.
Marty Anderson: Well, I was gonna say that you help me a lot too in a lot of ways. It’s helping me figure out how to respond to something or reply to an email or to when to take an action on something, what kind of action I should take on it. I think that people really just assume that, in relationships with disabilities, that there’s gotta be a caretaker and then the disabled person that’s getting taken care of. And it’s two disabled people, just like two able-bodied people. do things just to help each other out because that’s what we need to do to get through situations, right? And a lot of that is just based out of love. It’s based out of respect, and it’s based out of care for one another. And oftentimes even when we’re helping each other, it’s not we get this feeling of, “Oh, I’m helping them out.” It’s more as we’re just doing what we need to do.
Alycia Anderson: I have a question.
Marty Anderson: Sure.
Alycia Anderson: What do you think that people completely misunderstand about disabled relationships when there’s two people with disabilities?
What do people misunderstand when there’s two people with disabilities in a relationship? Can you not rub your eye while you’re answering the question?
Marty Anderson: I think that people misunderstand the opportunities that we maybe have and things that we wanna do. I think that this is one of those areas where we’re oftentimes pointing out the lack of accessibility. This shows up and over again in the entertainment industry when you and I wanna go to a play together and sit next to each other, and there’s one disabled seat and a companion seat.
When we wanna go to the movie theater and there’s one companion seat and there’s one disabled seat, why aren’t there ever two disabled seats right next to each other in those types of situations? That is a, a total assumption that hey, we’re not gonna, go do anything together. It always boggles my mind.
Alycia Anderson: I think that is the assumption there is actually developers, people that are planning things like theaters, they don’t think that two people in wheelchairs are gonna be married. They think that a disabled person is gonna always have an attendant with them or a caregiver. And that’s why theaters are set up like that, and that’s ableism, right?
This is why we’re having this episode because people don’t expect often, people don’t expect often there to be wheelchair user couples that literally will go into a movie theater and say, “We wanna buy two tickets. We need two spots for our wheelchairs to sit, and two chairs to transfer into so we can both sit in a theater seat for the two hours of the movie.”
And this is miss hits because we’re not being accommodated for like we would be married or in a social situation or things like that. So that’s, that is what is completely misunderstood in that scenario, in my opinion. And what is also misunderstood goes back to that, is that people don’t expect two people in wheelchairs to get married, and if they do get married, they don’t expect our marriage to have the same layers as everybody else.
Careers, intimacy, challenges, financial, planning. Like, all the things, medical, all the things that we have to do together, people don’t assume that two wheelchair users are gonna be married and are gonna be tackling all those things. The intimacy thing is a huge one. People don’t…
General public doesn’t expect two disabled people to be married and intimate and have a healthy life like that, and that is a false narrative. I think those are some of the big hits, miss hits.
All right, so let’s switch it up a little bit and let’s go to a different question.
Okay, so I think we should do some myth-busting, speaking of what people are misunderstanding about disabled relationships. What do you think?
Marty Anderson: Sure.
Alycia Anderson: Okay. What do non-disabled couples take for granted?
Marty Anderson: I don’t know. I don’t know any non-disabled couples.
Alycia Anderson: What? We know plenty of non-disabled couples.
Maybe Spontaneity and travel
Marty Anderson: I don’t know. What do they take for granted?
Alycia Anderson: I think spontaneity in travel is a good one. Like being able to travel anywhere and just drop a pin somewhere and go, “This is where we’re going,” and not having to worry about like if there’s gonna be access. Or being invited to a party and at somebody’s home, and not having to worry about if it’s gonna be accessible when you get there.
Or, Restaurant seating. We were just talking about seating. Seating in different places. Anything else?
Marty Anderson: I got one.
Alycia Anderson: Okay, what is it?
Marty Anderson: non-disabled couples may take for granted the fact that ride shares or transportation or any of these types of, modes of getting around are there for them to just jump in and go, for us it’s “Oh, you gotta get the XL Uber,” or, “You gotta get the accessible Uber,” or, there’s limited limited modes for us.
Alycia Anderson: With, Airbnbs and things too, we’ve been denied if we, if the Airbnb is not technically accessible even though we can tell that we are able to access. And the rideshare thing is a big deal because we get left on the side of the road a lot when our wheelchairs are spotted by a driver.
So yeah, that’s a big one. That’s not even what couples take for granted though. That’s just what people don’t understand is that some of these services that are out there that everybody is using now, they have a lot of bias and discrimination against people with disabilities.
They’re, they don’t want us in their cars, they don’t want our equipment in their cars, they don’t want our service dogs in their cars, they don’t want all of these things. They don’t want our wheelchairs in their homes when we’re renting them. And it is, it’s a harsh reality that we live in when there’s all these opportunities to use those types of services and they discriminate highly against disabled people, like highly.
Marty Anderson: Yeah, we’re pretty lucky that we have a lot of non-disabled friends that that are really empathetic and they think about things. And we don’t see them taking stuff for granted very often, But one of the other things may be like getting ready in a room or seeing the mirrors on the walls. Generally up halfway up the wall and right there for them. They probably have no idea that, lot of times we don’t even get to see what we look like when we’re in a restroom or powder room or,…
Alycia Anderson: Hotel room.
Marty Anderson: Anywhere there’s a mirror.
Alycia Anderson: Yeah. Okay, so let’s do round three. Wheelchair couple hot takes This is an agree or disagree. Okay? I’ll read the first one.
Marty Anderson: Accessible hotel rooms should never have carpet.
Alycia Anderson: Agree.
Marty Anderson: Yeah, I don’t even think they should have carpet in hotel rooms, period. Or hotel hallways or hotel lobbies or anywhere in the hotel.
Alycia Anderson: Explain why. Why is that hard for us?
Marty Anderson: Oh, you remember when I tried to take you to the play downtown in Sacramento, and we went to go see Hamilton, and we got that nice balcony box, and, we thought, “Oh, how nice this will be. We’ll get there a little early. We’ll go have a cocktail out in the bar area, and, we’ll mosey over to our seats and get comfortable.” then all of a sudden we show up there, and this place has probably got a carpet that’s maybe a foot thick, and was like pushing in sand.
Alycia Anderson: It was.
Marty Anderson: The idea of carrying a cocktail in one of those little plastic cups while pushing, your chair over to your seat, I think we made it about two to three pushes away from the counter, and we said, “Hey, this is our spot.
We’re gonna suck these things down right here, and I hope we make the show.”
Alycia Anderson: Yeah. Carpet is bad. Carpet is really hard for navigating, especially when you’re holding a drink or pushing luggage or any of those things.
Marty Anderson: I used to walk a little bit with my leg brace and could never really feel this thing, with the carpet. I guess if you’re barefoot or something and you wanna just trounce around, but real dangerous too. Things get stuck in there, you never see a shard of glass or something. Who knows, so yeah, carpet…
Alycia Anderson: These are quick ones.
Marty Anderson: No way.
Alycia Anderson: Okay. Disabled people are better problem solvers.
Marty Anderson: It depends on what kind of problem we’re talking about. Maybe on that one we could go a 50/50. Let’s give a little love to our able-bodied friends out there.
Alycia Anderson: I agree. Automatic doors should always be required. Yes
Marty Anderson: You’re in agreeance on that?
Alycia Anderson: Why not?
Marty Anderson: Yeah?
Alycia Anderson: It helps everybody. Automatic door openers?
Marty Anderson: Yeah?
Alycia Anderson: Yeah.
Marty Anderson: Do you like those spinning ones?
I don’t think that’s automatic door opener. Sometimes they’re automatic. They spin automatically or something. No?
Alycia Anderson: People are more uncomfortable around disability than disabled people are. Agreed.
Marty Anderson: People are more uncomfortable around disability than disabled people are?
Alycia Anderson: I don’t know actually, now that I’m thinking about it. I think it depends on your education level and how much you’ve been exposed, disability or not.
Marty Anderson: True.
Alycia Anderson: There was a time in my younger life that I wasn’t very comfortable being around disabled people. So I had to really learn about my culture in it, and the movement, and all the things to find my wheels in it. So I think that doesn’t matter if you’re, you have a disability or not.
Marty Anderson: Yep, yep. How about being married to another disabled person makes some parts of life easier?
Alycia Anderson: It makes,…
Marty Anderson: Do you agree or disagree?
Alycia Anderson: I think it makes some parts of life,
Marty Anderson: Some parts are easier and some parts are tougher, right? When the only option is the stairs, then it’s quite tough for me to lift you up and hop you one leg up a flight of stairs. You do like to tell that story that I used to do it way back in my twenties.
Alycia Anderson: He used to carry me on the airplane like that too. Marty used to be able to hop on his one leg down the airplane aisle to take me into the bathroom so I wouldn’t have to… So I’d be able to use the bathroom on a plane.
Marty Anderson: Yeah. You wouldn’t even dream of using an aisle chair on a plane way back in those days. Right?
Alycia Anderson: Let’s move through this, babe. We’re getting to the end.
Marty Anderson:
Alycia Anderson: Let’s get to the surprisingly great stuff. How about that? Let’s ask each other a few questions like, what is your favorite thing about being married to another disabled person?
No, I don’t wanna answer any more questions.
Marty Anderson: You don’t want to answer any more questions?
Alycia Anderson: We gotta wrap this up. It’s too long
Marty Anderson: Okay, let’s get to the finish. What’s one thing we’ve learned after almost 15 years that has nothing to do with disability and everything to do with marriage?
Alycia Anderson: Marriage is one of the hardest things that I’ve ever committed to in my life, but it is absolutely the best thing that I’ve committed to in my life. And it’s my favorite thing that I’ve accomplished, is having a partner and creating a life with somebody, and I’m really glad that somebody is you.
Marty Anderson: That’s amazing. That’s amazing, babe.
Alycia Anderson: Marty, I think this was such a fun episode to do a little Q&A, little deep dive into our relationship, our dual disability, and like all the, all of our love and all the things. I think you need to take us out with a pushing forward moment.
What’s a pushing forward moment that you could leave, gift away on our way out today?
Marty Anderson: Pushing forward moment for today is to take things a little lighter. try to have some fun with your life. Everything doesn’t need to be serious. Sometimes we can be a little goofy. Sometimes we can just unwind a little bit and be so serious. I’d like to get a dual moment on this one as well, so why don’t you throw out a pushing forward for yourself today?
Alycia Anderson: My pushing forward moment today is all you need is love. Love is all you need, disability or not. Go find love today.
Marty Anderson: That’s beautiful.
Alycia Anderson: Thank you for hanging out with us today. For everybody who’s been listening, I hope you enjoyed this episode. Please share it with somebody who could use a laugh, who could use a little love or light in their life.
Make sure you’re following Pushing Forward with Alycia on all the channels and on YouTube, and thank you for joining us. We’ll be back next week. This has been Pushing Forward with Alycia and Marty, and that is how we roll on this podcast. We’ll see you next week.
