Transportation Challenges and Opportunities for People with Disabilities

CARLY PACHECO, HOST: From KVMR and in partnership with FREED, this is Disability Rap.

VIOLA DWYER: Before there were even lifts on the bus, I would have to get lifted or carried by my oldest sister – who didn’t have a disability – onto the bus, and the bus driver getting impatient.

PACHECO: Today, Dan and Viola Dwyer on the joys and challenges of transportation for people with disabilities.

VIOLA DWYER: And the day that Dan and I could wheel our power wheelchairs onto a plane, well, first I’m gonna cry. But the second thing I’m gonna do is just be totally elated for – I mean – it will be revolutionary just to do that simple act.

PACHECO: That’s all coming up right here on Disability Rap. Stay tuned!

[Music]

PACHECO: Welcome to Disability Rap. I’m Carly Pacheco with Carl Sigmond.

Today on the show, we’re going to talk transportation for people with disabilities and the opportunities and challenges that come with public transportation for our community.

We’re joined by Dan and Viola Dwyer. Disability Rap listeners may remember Dan and Viola from our February 2021 show, when we did a Valentine’s Day special. If you missed that episode, go to FREED.org/disabilityrap, where you can listen to it or read the transcript.

Dan and Viola are a married couple living just outside of Philadelphia, Pennsylvania. In 2020, they started a YouTube channel called The Ginchiest, where they talk about disability experiences and what these experiences teach people about being human. They are working to create a society where differences are intriguing and accepted, not shameful and feared.

In addition to their work on The Ginchiest, Viola is now a lead recruiter at La Jolla Logic. She was born with a genetic neuromuscular disease called Spinal Muscular Atrophy. She grew up using a wheelchair and continues to do so today. Dan was in a hit and run accident at the age of nine that left him in a coma for three months and resulted in a traumatic brain injury that he lives with today.

Here’s an interview Carl recorded with Dan and Viola last month.

CARL SIGMOND, HOST: Dan and Viola, it is great to have you back on the show. I actually want to begin where we first met. I met you in the main Amtrak train station in Philadelphia, 30th Street Station. You were waiting for a train to go south to Charlotte, North Carolina, and I was waiting for a train north to Massachusetts, where I was living at the time. And I want to begin there because I think it says so much about our experiences as people with disabilities riding public transportation. Can you reflect a bit about that trip to Charlotte? If I remember, you said they put you each in separate cars. What was that whole trip like for you?

VIOLA DWYER: I don’t recall if we actually had to be separated, though that has happened many a time on a SEPTA train, where there isn’t enough space. Because in typical train cars, there’s only a designated space for, maybe, two wheelchairs, about. And so, especially on SEPTA, it can be very, very tight. The train cars are older and there isn’t as much space allocated.

And then in Amtrak, it can come to that, because there also isn’t a lot of space. Like typically, they put you near where the luggage is stored and the bathrooms, which can be a double-edged sword – to be by the bathrooms. But yeah, so that trip, we had to stay together, because we needed to help each other. That trip was a very, very long one. I think it took… How many hours did it take, Dan, to get there from Philadelphia?

DAN DWYER: Twelve, I believe.

VIOLA DWYER: Twelve hours?

Yeah, so, you know, we had to stay together because we helped each other. I helped him with food, and Dan helps me with positioning and things.

SIGMOND: Thank you, and I should note for a national audience that SEPTA is the regional transit provider in the Philadelphia area. I want to go back even more. What are some of your earliest memories riding public transit as disabled people? What was that like for both of you?

DAN DWYER: I just remember I used to live in Philadelphia proper, so I would either take the buses or the El.

VIOLA DWYER (repeating Dan): I used to live in Philadelphia proper, so I would take either the buses or the El, which is the subway system – one of the subway systems – that runs in Philadelphia.

DAN DWYER: I remember getting frustrated when the buses’ lifts broke down.

VIOLA DWYER (repeating Dan): I remember getting frustrated when the buses’ lifts would break down.

DAN DWYER: But that would happen no matter what, even if you had a private vehicle or a bus.

VIOLA DWYER (repeating Dan): But that happened no matter if you had a private vehicle or were going on a bus.

DAN DWYER: I also love when I got either down through the El or getting off and the elevator was broke.

VIOLA DWYER (repeating Dan): I also love when getting off the El or another stop when the elevator would be broken.

VIOLA DWYER: I mean, my earliest memory of using public transportation is… This is before there were even lifts on the buses, and I would have to get lifted or carried by my oldest sister – who didn’t have a disability – onto the bus. And the bus driver getting impatient because she then had to get back off the bus to take up my wheelchair, fold it, and get me situated before actually moving again. And I just remember how – you know – how much the center of attention I was, how many people were staring, how awkward it felt to be lifted and carried all that way.

So I was very, very grateful once lifts became the norm on the city buses, and particularly when they switched to the foldout ramp ones, because I [felt] very uncomfortable in the prior type of lifts. They were like steps that transformed into a platform lift, and I’ve heard horror stories of it malfunctioning and people falling off of them from their wheelchairs. And I was always worried that that would be me. So I really, really feel much safer with the foldout ramp.

SIGMOND: Yeah, I also grew up in Philadelphia, and I actually had forgotten about those lifts on SEPTA buses. I was never scared of those lifts, but the lifts I am terrified of are on long-distance coach buses. Have you ever used them?

VIOLA DWYER: Yes, Dan has. Dan, he’s talking about the Greyhound lifts, remember? That raised you really high up in the air.

DAN DWYER: Yeah.

VIOLA DWYER: But Dan has an adventurous spirit, you see. Like, not much freaks Dan out. He’s not afraid of many things. So I tremble and as I look on, because I would never… I think I did it once or twice and I told them… It was a Megabus bus and I thought I might die on this thing. So we had to ride Amtrak going back. This was a DC trip. But Dan, he will regularly do it. If it requires it, he will get on a Greyhound bus, and get on that tiny little platform, and be raised like seven feet in the air.

SIGMOND: For me, the height is not what is scary, but in my experience, half the time, they don’t work properly or the bus drivers don’t know how to operate them well.

VIOLA DWYER: No, I mean, we’ve even had to coach or guide along a Greyhound bus driver, during one of Dan’s adventures to Pittsburgh.

SIGMOND: Yup, been there, as well. I want to pivot to talking about accessible vans. You have one. I now have one myself, and I know for me, it has opened up a huge number of possibilities that were not previously available to me. Can you talk a bit about your experiences?

VIOLA DWYER: Accessible vans… Wheelchair accessible vans, at least, are very, very expensive and typically need to be paid for by some entity. So we’re very fortunate to be able to have access even to a van and to get help with the payment of the conversion. Because there’s a van itself; that’s your average minivan, typically. And then there’s the conversion, which requires the van floor to typically be lowered, and seats to be taken out, brackets being put in to strap down the wheelchair, a ramp mechanism to be installed, all these things. And then if you’re a driver – because some wheelchair users will drive themselves – then that’s another, you know, additional equipment that’s quite pricey.

I mean, I did go through the process of getting my license, but I never felt safe with the system that I trained on, which was the Scott system at the time. I never really felt safe driving, so I never did. And so I ended up… My parents, you know, they were able to fund the conversion when I was in my early 20s. So I didn’t have it growing up, which was a huge difficulty, like, as you said, Carl. Like, I mean, when you have a van and you can suddenly move around more freely and [not] have to rely on these crazy bus schedules and be late all the time, it really does open up a world of possibilities. It is extremely challenging, financially, to afford a van, and to have one is a true privilege. Because not many people with disabilities who need it get them.

So, to get back to the possibility of driving, it’s something that I want to explore again, because the technology has changed now so that you can drive with very limited hand strength. And as long as you have some coordination or even some way to manipulate a joystick… Because that’s something that – you know – possibly Dan could do, as well. There is that technology now. And so, if either one of us or both of us were able to drive our own van, that would add to our autonomy, as well. Because right now, we rely on our assistants to drive our van for us in it, And that is kind of… It’s difficult. It makes it more difficult. It’s almost to the point of – you know – public transportation, because you need to coordinate with their schedule and it’s not when and wherever you want to go.

SIGMOND: I could not agree more. And I just want to say for our listeners, wherever you are, at least if you are in the United States, if you are considering getting an accessible van, reach out to your local independent living center and they can help you explore various funding opportunities, at least for the accessible conversion portion of the cost of the van. It is definitely a privilege to own one.

Air travel: what has that been like for you? What stories do you have there?

VIOLA DWYER: Oof, we could talk for the rest of our lives about that one, Carl, because wow! But for you [Dan], it’s I think more easy.

DAN DWYER: Yes.

VIOLA DWYER: Dan is able to walk on and off a plane and get situated himself in an airplane seat. He does… You have brought your wheelchair, though.

DAN DWYER: Yes –

VIOLA DWYER: We’ve traveled –

DAN DWYER: To Pittsburgh and to Arizona.

VIOLA DWYER (repeating Dan): Yes, to Pittsburgh and Arizona.

VIOLA DWYER: Yeah, and did you have any problems with your chair after it arrived?

DAN DWYER: No.

VIOLA DWYER: Okay, you’re lucky.

[Laughter]

VIOLA DWYER: Because I purposely… So I’ve traveled… Both of us have traveled extensively, but Dan doesn’t always take his chair. And there’s a reason for that. Now, I cannot leave my chair because, unlike Dan, I’m not able to walk at all, and I rely on my chair the full time.

So, we’ve both traveled internationally and I purposely leave my power chair home, because it is nearly guaranteed that something will go wrong with the chair upon destination, arriving. And wheelchairs are way too expensive, way too customized – the equipment – to take that risk.

And so again, I’ve been very fortunate to have a separate chair that I’ve used just for traveling, that’s lightweight. It’s kind of like the very, very old version of what exists now, that I think are called, like, easy light chairs, or something. They’re becoming more and more accessible, I think, financially, and in terms of, like, accommodating air travel restrictions. And so, I had one from Invacare, which was about the same price range. But it wasn’t meant for air travel. But I got it purposely for air travel because of the excessively high rate of damage that airline carriers do to power wheelchairs. It’s horrible. It’s made news. It’s – you know – gone viral on TicTok. It’s a problem. And the day that Dan and I could reel our power wheelchairs onto a plane, well, first I’m gonna cry. But the second thing I’m gonna do is just be totally elated for – I mean – it will be revolutionary just to do that simple act.

SIGMOND: Yes, indeed. As we begin to wrap up, other than driving wheelchairs onto planes, which seems like a no-brainer, what else would you like transit operators and transit planners to know about our community and our travel needs?

VIOLA DWYER: I would say that it’s not as complicated as you think. I would even go back a step to other solutions, such as autonomous vehicles. I think that there could be more inclusivity there. And it would really open up a broader range of options for people with disabilities, transportation-wise. If we were thinking about, okay… When we’re building these autonomous vehicles, are we thinking about people [with] various physical abilities? And I don’t think the answer is yes right now. I mean, I have yet to see an autonomous vehicle that’s really integrating different abilities. So I think that that is another area where we could see more inclusivity. But yeah, to the transit planners and the operators, I would say: It’s not that complicated, but it makes a world of difference when we are included in the planning.

PACHECO: That was Carl’s interview with Dan and Viola Dwyer. Again, their YouTube channel is The Ginchiest. To listen to our interview with them from February 2021, go to FREED.org/disabilityrap.

And that does it for this show, which was produced and edited by Carl Sigmond. Special thanks to Courtney Williams for her support. To listen to this show again, go to FREED.org/disabilityrap or wherever you get your podcasts. I’m Carly Pacheco with Carl Sigmond for another edition of Disability Rap.