This segment explores key strategies for requesting workplace accommodations, navigating accessible travel, and preparing effectively for emergencies.
Transcript
From Bionews surveying people, 63% of the community said they frequently, occasionally delayed, altered, or even avoided travel due to accessibility, airline equipment concerns, and another whopping 66% describing school or workplace accommodations as exhausting or only somewhat manageable.
Um, I can personally add too that I’ve read a lot of columns about about statistics such as these. And I think the other thing that people don’t take into account is that a lot of us in the rare disease community after a while we just stop complaining. Um, everybody knows that the bathroom on an airplane is impossible for us. So the argument then is why should I bother? But if enough of us keep yelling at the airlines saying there’s no chance for us to go to the bathroom. So here’s what we do on a flight. We either dehydrate ourselves so we don’t have to pee at all, right? Or we skip it altogether or we try and figure out a way to do do the business at our seat with a bag or something like that, which is ridiculous, but I think those statistics would be higher, but we stop complaining, which doesn’t mean the complaint isn’t there. We’ve just we’ve not given up, but we’re kind of like, “Okay, there’s only so many hills you can die on, right?” So the advocacy part gets tiring. So I want to ask you guys, you know, anybody can take this, but I I know, you know, Adith, Kelly, you guys have had college experience. We could talk about that in the workplace, um, or or we can just talk about in general traveling stuff. Uh, you know, I I heard all you guys talk about loading up a van. Where where do you want to start?
Yeah, I can jump in. Um, yeah, as far as just planning and travel or going anywhere, just checking, triple checking, um, Google Street Maps is my best friend. That’s my most frequented visited thing on the internet because I’m always looking up addresses and places to see what the entrance is like. Are there curbs? Are there barriers? What is parking like? Um, because websites don’t always indicate those information, and even calling them, you’re getting a random person that may not even understand accessibility needs. So, um, I try to plan as much as I can beforehand. Um, and just really research, uh, prior to going anywhere and just, um, always having to adapt on the fly and pivot when even things don’t go wrong, like maybe the elevator’s broken or maybe, you know, that that ramp is closed or the entrance is closed. So, um, just having those kind of real world experiences to be like, “Okay, now we’re doing this,” just being able to kind of adapt on the fly.
Yeah, I think just to echo what Kelly said, um, Google Maps Street View has been excellent. Um, a lot of times if I’m traveling somewhere, um, like let’s say it’s to, I don’t know, a museum or an attraction or like even a restaurant. Um, something I’ve started doing recently is I’ll call like, um, you know, the host at the restaurant or whatever and ask them to do FaceTime or some other video call and show me what the entrance looks like or show me, you know, um, what the inside of the restaurant is going to look like, um, accessibility-wise, just so that I can get really get a, um, clear idea of, “Okay, am I going to be able to manage this with the tools that I have at hand right now? Is there an alternate way?” Uh, because lots of times you might be able to figure out something that’s accessible and the people on the ground there can’t. You know, they just don’t have that experience that we have. And, um, I’ve started doing this with hotel rooms as well because a lot of times, um, Betty, I know I’m sure this is something you’ve encountered many, many times, you get to a hotel and there’s no room under the bed for the Hoyer lift, and then, you know, I’m sure you have to physically transfer all three of your sons and that’s a lot, you know. Um, so I’ve gotten into the habit of asking them to, you know, um, show me video of the exact room I’ll be staying in, too, and, you know, just giving them instructions like, “Hey, can you show me under the bed? I want to make sure there’s room, um, under the bed.” And also explaining to them why I’m asking these questions so that in the future, if they encounter someone else who asks similar questions, they know how to respond. So I think it’s both an educational experience for myself as well as others. And I actually keep a list of like every hotel that we’ve stayed in in various different cities, um, you know, the room number and all of that, and just some of the, um, the ones that I found to be, um, pretty accessible. So that’s been helpful, um, as well. So, but I think just thinking on the fly.
No, I love the fact that you’re always educating. I think that’s extremely helpful because more people are going to come after you and in in the terms of, you know, looking around and traveling. And I also feel like as a disabled adult, we have a responsibility to pass this forward, the fact that look, we’re out and about in our communities and we are like everybody else and we should really have the same rights as everybody else to gain access to stuff. So, while you were talking, I dropped in the, um, our friend Maayan from Toronto, um, has developed an app and a website called AccessNow. And, uh, you put it on your phone, but you can drop a pin in all kinds of local places or if you travel, and you can specifically say—you can block your user stuff—but you could say, you know, “I’m I have muscular dystrophy and I visited this place, and it has everything from auto doors… How’s the bathroom?” Um, so this is gaining, uh, a lot of, um, notoriety around North America for a spot where other disabled people can rate stuff. Um, I agree.
It’s an app I use. So, yeah.
Yeah, I use it, too, and I agree. Uh, there, you know, there are people that don’t care about accessibility, but again, we need to educate, uh, and we still need to talk to people, um, about how to do this. Uh, we, you know, we could do a whole another webinar on flying with a power wheelchair. Uh, I I waffle, but I refuse to not fly. I want them to see me. Uh, I fly with my power chair. It has been damaged. It has been repaired. But I have I have insisted that I don’t want to be transferred down at the bottom right outside the door of the plane. Uh, when I’m getting off the plane, I make them take me all the way up into the jetway. And they say, “Why?” and I say, “I’m more comfortable,” when really I want everybody getting on the plane to see what a giant mess it is to get me out of the aisle chair into another chair while I wait for my chair, and everyone just looks, and I love it because everyone feels awkward. I want everybody to realize it could be much better. Stop hiding us. We’re out here and we’re going to travel. But now I’m on my soapbox. Kelly, Betty, van travel, hotels, airplanes, what do you got? Hang gliding.
Um, I I would I could jump in here just a little bit. Um, from a caregiver perspective, um, having three sons with Duchenne, I’m always outnumbered as a caregiver. Um, and so one important thing when we’re traveling is that we have to share the responsibility. And I it’s not just finding the hotel and making sure it’s accessible, but all the little things, like I drive a very large van to fit three power chairs in it. It’s 9 ft tall, and a lot of times I’m driving in a city that I don’t know very well. So I’m extra cautious, a little nervous, and so I have the boys are navigating. They’re they’re on the map also making sure I turn at the right spot or that I see the right lane. Um, so I put them in charge and they also help with all of the packing. Like, I don’t know how you guys all pack, but I mostly pack for my three sons. But there are things that, um, I ask them to do like, “Find your chargers,” because it’s on their desk. It’s things that they can reach. “Please get your your your headphones that you want to take when we’re traveling.” Like I do have them help me also just to take some of the chores off of my list because it can get pretty extensive traveling with three of them. And because we have such a large family, I typically travel alone with the boys to all of their medical appointments or and for some of the fun stuff, too. But, um, it’s definitely more helpful when everybody takes a little bit of the load, because traveling is stressful, um, with three power wheelchairs. And, you know, even just little things like when you guys were talking about finding access to the the the accessible entrance to the restaurants. In my situation, we have to go into the restaurant anyways to see if there’s room for three power chairs. There have been a lot of time that we go in and say, “Can Is there a table that can fit three power chairs?” And there there’s no space. There’s no room for us to get our guys in. So, we’re off to the next restaurant. So, it does take so much extra planning and energy. And I know I couldn’t do it if I didn’t have my guys helping me with some of the tasks.
I love that. And I just I just plugged your column, uh, because I think everybody listening, it would be helpful to read because you have amazing stories to tell. Uh, one more time, uh, somebody just asked specifically, your three boys living with Duchenne, how old are they?
Um, 15, 17, and 20.
Kelly, anything you want to add for travel? You must have to travel sometimes for work coverages and such.
I do. Yeah. Um, I mainly I’m an adaptive driver, so I’m able to, um, drive my adaptive van independently. Um, I have flown before. It’s, you know, kind of like you mentioned, a mixed bag of what ends up happening. Um, but I definitely would encourage people to know their rights as an individual, like your air rights and even with any public transit, like your rights on buses, anything like just so that you know what’s legally allowed. Um, and so you’re not left stranded, that you know your rights. That’s really important.
And there are I know the Airline Passengers with Disabilities Bill of Rights is a big thing, but there are there are sites to go and look at. Um, TSA is helpful if you’re flying, if you call them a couple of days ahead of time. Uh, and again, like Adith said, calling the hotel, doing a FaceTime, telling them why you’re doing this. A lot of people are are happy to help. Uh, and I’ve also learned that hotels have heard and seen everything. They have people ask for specific rooms because they’re superstitious, or they don’t want to face the south or it or or the north, or like it’s just they’ve seen and heard everything. So don’t think you’re going to go in and stump them, because they’ve probably gotten, uh, you know, kind of the same. So I think, you know, somebody just put in the chat or BioNews put in the chat, “Be specific, ask network, and and lean on community.” You know, we’re—if you’re watching this, the four of us are resources for you now, and you can find your way to us using BioNews and and, um, and email, and you can ask us ask us what, you know, what we can help you with.
Sources:
Bionews MD Webinar Part 2 9-22-26 1.mp4
