Portland Community College | Portland, Oregon

Episode Transcript

Transcript edited by Hannah “Asher” Sham

Introduction

Kylo: You’re listening to Let’s Talk!. Let’s Talk! is a digital space for students at PCC experiencing disabilities to share their perspectives, ideas, and worldviews in an inclusive and accessible environment. The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the opinions or positions of Portland Community College, PCC Foundation, or our community partners. We broadcast on our home website, pcc.edu/dca, on Spotify, on XRAY 91.1 FM and 107.1 FM, and KBOO Community Radio, 90.7 FM.

Meet the Guests

Asher: Hello, Let’s Talk! Listeners! My name is Asher, and I am here with some very special guests today from The Wheelchair Repair Shop. Do you guys mind introducing yourselves, your name, occupation, and your pronouns, please?

West: Sure! Thanks, Asher! This is a wonderful opportunity to share a little bit about ourselves. My name is West Lividay, and I’m the executive director of Oregon Spinal Cord Injury Connection, and my pronouns are he/him.

Tyler: Thanks, Asher. My name is Tyler. I use he or they pronouns, and I am one of our repair coordinators here, at The Wheelchair Repair Shop.

Asher: Awesome. Thank you guys so much for joining me today. 

What the Repair Shop Is

Asher: For listeners who may not be familiar with your work, what is The Wheelchair Repair Shop and how did it come to exist?

West: Yeah, so The Wheelchair Repair Shop is a new program that Oregon Spinal Cord Injury Connection is launching. It really came out of our wheelchair maintenance workshops, which is a monthly workshop that is hosted in multiple cities around the state. We meet for two to three hours, and we provide, education, free access to tools, and the space to help people address their critical wheelchair needs. Sometimes that’s simple maintenance or repairs, and we utilize volunteers that have a heart for this work to really make this program come alive. So, the wheelchair repair shop is an effort to expand the hours and we’re starting in Portland. We have a space and we have, I think it’s, four shifts of four hours each month currently.

Asher: Awesome. Cool. Thanks for that, West. 

From Workshops to Shop

Asher: What role does The Wheelchair Repair Shop play within the Oregon Spinal Cord Injury Connection?

West: So, the Oregon Spinal Cord Injury Connection is like the parent organization, and The Wheelchair Repair Shop is like a microenterprise, or a small business, within the organization. The shift from “The Wheelchair Maintenance Workshops” to The Wheelchair Repair Shop is a shift from thinking about the work purely from a nonprofit perspective; getting grants and donations to do this work, and provide free services and parts to people, utilizing the revenue that comes through, providing services and repairs to make the program more sustainable, expand the services, and provide different modes in which people can access those services. Namely, mobile options and providing good quality, new parts, to people that can’t afford, perhaps, like brand new equipment.

Asher: I feel like that’s a very important part for people who do use wheelchairs and are wheelchair bound. They need the accessibility to be able to grab the parts they need in order to fix their wheelchairs and be able to move around. That’s a very huge work. Thanks for doing that. 

How They Got Here

Asher: Can each of you tell us a little bit about your background and what brought you to this work?

Tyler: I can start first, West. So, I’m actually not a wheelchair user. My background is that I was a bicycle mechanic for a really long time and I got interested in organizing around public transit, walkable cities, urban infrastructure… Through working in those groups, I ended up getting introduced to West and Allison, who started The Wheelchair Repair Nights at Bike Farm. I had no connection to the disability world, or anything like that. But, they told me, “Hey, we’re starting this wheelchair repair event and we think you’d be great.”. My first thought was, I don’t know anything about wheelchairs or repairing them, or anything, how can I be helpful? But, I’m really glad that they both pushed on me a little bit, because it turns out that repairing wheelchairs is really, really similar to the kind of skills that I had from working on bikes. It’s been really exciting to, over the years, kind of use these skills I already had, but use them in a different way that’s really impactful. So, it’s just been really fun, and I’ve really enjoyed kind of working with this program. But, yeah. I did not come at this from a disability sort of background. I came into it from more of just like a mechanical and volunteering thing. But, I will say like learning about this gap in services that the current kind of repair industry is leaving people in; it’s been really motivating and really encouraged me to dive deeper into the disability-related work.

West: I’ll go next. So, I do have a spinal cord injury, in 2013, and out of that experience started Oregon Spinal Cord Injury Connection to try to create community and access to services and resources that I didn’t experience. Part of that experience of becoming a wheelchair user was navigating durable medical equipment services and getting access to learning how to repair my chair. It wasn’t easy and it quickly became obvious that it’s easier to do it with somebody else’s help. Specifically, to Oregon Spinal Cord Injury Connection, my spinal cord injury is what brought me to that work, as a wheelchair user. Trying to navigate durable medical equipment, companies, and fixing my chair on my own really was the idea that brought Allison and me together to start The Wheelchair Maintenance Workshop.

How OSCIC Started

Asher: Awesome. Thank you so much for sharing how The Wheelchair Repair Shop and how The Spinal Cord Injury Connection also came to be. I know you touched on this a little bit, West. But, what fully inspired you to create the Oregon Spinal Cord Injury Connection? Was it simply your injury, something else, or…

West: yeah, I guess what I would share is; after my spinal cord injury, I was trying to make sense of the world and move forward as best I could. I was working in Public Health and I started a degree at OHSU to get a Master’s Degree in Public Health. That, in addition to my experience with spinal cord injury, galvanized me to host meetups where I would meet other people and we could share stories and build community. Those meetups were really well-received and more and more people came; they were here in Portland. Over the course of a year, or two years, they kinda became… I don’t know what to say. But, basically, people knew that they were there and I was encouraged to try to make it something more, and that’s when we became a nonprofit. So, what I try to do and what I’ve tried to create with Oregon Spinal Cord Injury Connection is, a space where people can thrive and find community after a really devastating injury. It can be very devastating and families can find themselves at a loss without resources and it’s very disruptive at nearly every level of a person’s life; physically, educationally, job-wise, relationally. It just turns everything upside down. What I’ve come to learn over these years is that, more than money, more than the level of injury that a person has, like a really serious injury or a lesser, almost any other factor; having strong community support is one of the greatest indicators that someone will thrive after a spinal cord injury. So, to put it simply, starting the Oregon Spinal Cord Injury Connection was my way of metabolizing something that happened to me and trying to make it positive.

Why Repair Matters

Asher: That’s awesome. As soon as you started the Oregon Spinal Cord Injury Connection, you saw some gaps that were unmet in the community. Was that how you identified that wheelchair repair was such an important service to offer?

West: Yeah. Tyler alluded to this previously. But, people that use wheelchairs, rely on wheelchairs for their independence and, getting out into the community quickly realize that the medical industrial complex has a lockdown on wheelchair repair and parts. It’s difficult, it’s frustrating, and it can actually have serious negative health consequences for a person when their chair breaks down. It has physical aspects and emotional aspects and it’s really cool to come together with bike mechanics who care about wheelchair users and watch them learn what a wheelchair is. In those conversations at The Wheelchair Maintenance Workshop, at Bike Farm in Portland, I’ve seen wheelchair users impart their experience to the mechanic and the wheelchair user didn’t realize they knew so much technical aspects about their chair. Then the bike mechanic picked it up and started helping and working alongside this wheelchair user to fix what needed to be fixed. I guess for me, in a city that loves bicycles, there could not be a more like synergistic, symbiotic partnership. That’s what I’ve seen with these Wheelchair Maintenance Workshops, at the Bike Farm in Portland, every month. People coming to learn, people coming to be in community getting their wheelchair fixed when they’re really in a pinch. It’s a joyful place. It hums with positive energy and Tyler is kind of leader in that space. He has a ton of experience and like I think he’s naturally talented at problem-solving and people love to learn from him, and we all love to learn from each other. I’m not sure if that exactly answered the question, but it gives you a little bit of insight into the spirit of what this work is about.

Asher: It’s great. I love it! Yeah, definitely answered the question. Thinking about it, bicycles and wheelchairs sort of do have the same part, and correct me if I’m wrong, I’m not an expert at that either.

West: I’ll let Tyler answer that.

Proud Moments and Growth

Asher: I’ll get to that question as well, later on down the line in our list of questions too. Looking back, West, is there a moment or success story that makes you especially proud? Whether it’s The Wheelchair Repair Shop that you guys have opened up recently or the Oregon Spinal Cord Injury Connection?

West: I would say there are many things that I’m proud of. Not only for Oregon Spinal Cord Injury Connection, but also for the Wheelchair Maintenance Workshop. Of all of those things, what comes to mind immediately is the years that Alison and Tyler and I showed up at Bike Farm during COVID and during wintertime when nobody showed up. We tried, and we tried, and the season wasn’t right, perhaps. But, they stuck with it and there were times where I’m like, “Why haven’t you given up on this or given up on me with this?”. I realized then it wasn’t “Tyler and Alison doing West a favor” to lift this program and make it happen; it was their work their passion. Their care for this community. It’s like when a match lights another match, now you have two flames. This is what’s happening with the Wheelchair Maintenance Workshop and the Wheelchair Repair Shop, in Portland and around the state, is when we empower somebody with tools and equipment and companionship, their mechanical literacy improves, they have more confidence and they have a place to come to with this problem. With this challenge of living a life, in a wheelchair; maintaining it. That gives me so much joy. Tyler’s here. I’m very grateful to Tyler and, Alison is not here, I’m very grateful to Alison. We wouldn’t be here today. We wouldn’t have the success we had and The Wheelchair Repair Shop probably wouldn’t happen.

Tyler’s Coordinator Role

Asher: That’s super sweet! Thanks for that, West.  I’m moving the questions onto Tyler. I’m sorry to leave you out of that whole conversation. What does a typical day look like for you as a Wheelchair Repair Coordinator at the Wheelchair Repair Store?

Tyler: Yeah. So, “coordinating” is definitely the key word there. We are really new, making this move from something that we’re doing once a month to having a physical store where we’re open once a week. As we’ve opened, we’ve already been sort of flooded by repair requests. Which is great on the one hand and, on the other hand, it really highlights the size of this problem. That there’s so many people in the Portland area, that are not having these mechanical issues fixed in a timely or safe kind of manner. But, the coordinating part of my job is just fielding all of those requests and trying to pair people up with our volunteers, who are awesome and have really widely different skill sets. So, trying to pair a person with a volunteer who is going to be able to help them with whatever it is that they’re working on; whether it’s a power chair or they need some help with some seating adjustments, or whatever it is. Just trying to tie specific people in our community who have this need with a volunteer who has the time, energy, and skills to help them. So, yeah. A lot of coordinating, a lot of networking, and it’s really been cool to watch this kind of network get built.

Asher: Are you mostly in the store all the time now that it’s open, or do you do a lot of work from elsewhere?

Tyler: I do work from home mostly. This is not my full-time job, so I do it on the side and a lot of it is email and phone-based to just reach out to people; make sure that they feel heard. “Hey, we’ve received your request. We’re getting you connected with someone.”. Another thing that’s been really interesting is, thanks to some recent legislation that we helped get passed last year; we’re now able to access a lot more repair documentation online. Which means that a big chunk of my job now is also this computer research element; trying to figure out, “hey, this person, they gave me the serial number for their wheelchair. Let’s see if we can figure out, based on the service manual, what kind of batteries it has”, or something like that. So, that was not something I expected as much, but it’s become a larger part of my job lately. Is this kind of internet sleuthing, trying to figure out what could be causing this problem, or how does the manual recommend that we fix it? What have other people on the internet, across the world, done to solve these problems? Because we’re often kinda operating in an ecosystem where there isn’t always great info about how to solve these things. So, that’s been an unexpected but fun sort of component lately, too.

 

Right To Repair Bill Explained

Asher: What is this law that was passed that you mentioned, last year, if you don’t mind talking a little bit about it? 

Tyler: So, Oregon, a few years ago, passed a Right To Repair Bill. When it was first passed, the Right To Repair Bill covered consumer electronics. So, things like cell phones, TVs, laptops. The point of a Right To Repair Bill is to really break the monopoly that companies have on repairing devices. The most common one that everyone is familiar with would be smartphones. So, for a long time, if your screen broke; on iPhone, you had to take it to the Apple Store. In states with Right To Repair, you can have third-party repair businesses. So, all of a sudden, these businesses pop up that repair cell phones from all kinds of brands. These parts, the service diagrams, all of these things are made available to whoever kind of wants to fix them. So, you can fix them yourself, you can hire someone at a repair shop to do it, or you can take it to the manufacturer. You essentially have options when you want to decide how something gets repaired. Last year, what we helped get passed was that durable medical equipment, including powered wheelchairs, got added to the existing Right To Repair Bill. So, now it covers phones, laptops, computers, but also, really importantly, things like power chairs. So, companies can no longer sort of hide behind this monopoly. They now have to make these documents, tools– specialized tools, is another one. I think the text of the law says they have to be made available to the public at a reasonable price. So, if there’s some specific tool where it’s like you need this specific wrench to work on this specific object, that wrench has to be made available to the public at a, quote, “reasonable price”. So, that’s been really huge for us in helping to make sure that we actually can repair things. For a long time, a lot of repair tasks were sort of locked up, because these companies were hiding behind this monopoly.

Asher: Oh, interesting! Wow, I had no idea that wheelchairs, in general, don’t have an instruction manual or don’t have a way of telling you, “Oh, this is how you repair it in case this thing breaks down.”! I would think that machinery would have something that goes with it! But, I’m also very glad that that law has now been passed, and it was passed last year? Is there a name for the law itself, or I completely missed it, probably?

Tyler: West, do you remember what it was? I want to say it was “SB 55”, in Oregon?

West: Yeah, I think it was “SB 550”.

Tyler: “550”. Thanks. Yeah 

West: Championed by Senator Janeen Sollman.

Common Fixes and Issues Encountered at the Shop

Asher: That’s so good. I’m so glad that wheelchairs, especially machine-operated wheelchairs, now are able to be properly repaired and with the right tools at a reasonable price. With that, what are the most common repairs or issues encountered at The Wheelchair Repair Shop? Do you mostly fix “machine-based” wheelchairs or “manual”? Yeah, there we go. Correct me if I’m wrong with those terminologies and such.

Tyler: Yeah, I actually get asked this question a lot, and I always kind of get excited about it. Because, the answer is that the most common stuff is really, really small stuff. For example, “Hey, this bolt is loose. Can you tighten it?”. There’s so many things that– I’m surprised– don’t actually require, specialized tools or a whole workshop to fix. There’s so many times where people are like, “Hey, could you just raise the feet on my power chair by a half an inch?”, or “Can you tighten this bolt that’s coming loose?”, “Can you put this cup holder on the left side instead of the right side?”. Some of these things are really small, mechanically. But, of course, they make a really big difference to people. It’s like a bug in your brain when your wheel is squeaking everywhere you go. We just have to put a little bit of oil on that and tighten this bolt and it goes away. A lot of the things are not very complicated, so there’s a lot of repairs that kind of fall into that category. There’s kind of another category of just, wear and tear. We do live in a pretty rainy place, so it’s pretty common for bearings to get rusty, or just dirty from the water kind of splashing around in the wheels all the time. So, we replace a lot of bearings. Tires are another thing that just wear out over time as people roll on them, so we replace tires. Another one that has been coming up a lot lately is power chair batteries. Just like a cellphone batteries only have so many cycles of being charged and discharged before they wear out. So, some power chair batteries can last two to five years. But, oftentimes, when people get to the end of the life of the power chair batteries, they notice, “oh, it’s getting really slow. It doesn’t hold a charge for very long.”. So, that’s another thing that people pretty frequently reach out to us about.

Barriers in Traditional Repair

Asher: You mentioned this a little bit, Tyler. But, what are some challenges people face when trying to get repairs through traditional channels? Whether it’s like coming into the shop to get it fixed or even going online; you were talking a little bit about like forums and trying to figure out the whole internet space of getting requests in for repairs and such.

Tyler: Yeah. This is definitely a topic that could be a whole hour-long podcast. Because, as with so many complex issues, there’s some sort of small things and then there’s some really big structural things. One of the really big structural things is in this country we have this whole insurance system of approvals and denials. I think everyone who’s interfaced with the medical world knows that can sometimes take a long time. People are also sometimes required to prove medical necessity for things. So, maybe you already have a wheelchair, but in order to get a repair done on the thing you need to prove to your insurance company that you still need this wheelchair. So, there’s all these kind of steps that we’ve added to the medical system that require people to document things, get stamped by 5 to 10 people, and all this stuff causes really long delays; which is really what makes it unacceptable. To have these repair companies telling people, “Well, we can’t come out to even look at it to diagnose the problem for three to six months.”. Then they figure out, “we need to replace your tires.”, then it’s gonna be another three to six months before they can go through that whole process, get insurance on board, order the parts, install them… at the workshops, people tell us a lot of horror stories about technicians who show up at their houses unannounced, so they weren’t home and then they say, “You missed your appointment. You have to wait.”. There’s so many things that just make it really hard for people to access. Which is why, increasingly, people are taking this more DIY, sort of, approach. So, one of the things that we kinda offer people is; a lot of the stuff that we’re doing is not really “medical”, in the sense that there are lots of things on wheelchairs. For example, seating adjustments, fitting, that you should have a professional custom fit the wheelchair for you. But, there’s other things, for example, putting new tires on; that aren’t really a medical procedure so much as they are just like a repair procedure. So, a lot of the stuff that we try to do is say, “Hey, like we can handle that stuff. That is well within our wheelhouse. You shouldn’t have to jump through all these hoops. We can tell you where to get tires from. We can help you figure out what size. We can install them.” So, even though some people are willing to go the DIY route, there’s another kind of thing too where some people, maybe they live in an apartment, they don’t really have space, maybe they don’t have tools, maybe whatever disability they have is limiting their hand function; they may not physically be able to hold a wrench in the way that is needed to do something like change a tire. So, that’s another place where we can come in and say, “Hey, we’re doing this still in a DIY, type of way”, but it’s really more of a “do it together”. To say, “How much do you wanna be involved? Do you wanna try to do this yourself? Would you like me to do it for you?”. We really try to work with you, but it’s still a very DIY process.

Asher: That’s awesome and great that even with all these different hoops of like insurance– I know that can be a really big nightmare to hop through– that The Wheelchair Shop is there to help out people in a very quick way or a very “DIY way”, as you mentioned. I’m sure that once there is a broken wheelchair, it quickly becomes a very big major life disruption for someone as well. 

Stories That Show Impact

Asher: Are there any repair stories that have stayed with you, or even with West, as well, just because of the difference that it made for someone’s life?

Tyler: Yeah, I can take this one first, and then I’ll pass it to West. But, every one of these stories, everything sticks with you. Because, you hear these horror stories from people and it’s just very aggravating. But, also very motivating. People are very thankful when you help them out, because of these things that they’ve gone through trying to get service. But, some of the stories that stick with me; there was a person who, the batteries ran out on their mobility scooter and, because of that, they were living in a skilled nursing type facility. We replaced the batteries in this scooter, and that was the difference for them between independence and living in the skilled nursing facility. So, they were able to return to like a more traditional apartment and live independently, which was lower cost for them, and also a much better experience for their mental health because they’re independently living, right? That’s a really empowering thing for a lot of people to do. So, there’s stories like that, where there’s this one mechanical piece of the puzzle that is keeping someone from something, and it’s really satisfying to go in and just literally fix that thing that is a barrier to this goal of theirs. Especially at all the monthly Bike Farm Workshops; there’s so many small repairs that we make that make a big difference to people. We’ll change the bearings out on someone’s wheelchair, they go to push it forward, and they’re just like, “Oh, whoa, this rolls so fast now!”. That was a five-minute little project and it made such a big difference to that person. That stuff is just like really, really heartening and so cool to see every time. I’ll pass it to West.

West: Thanks, Tyler. I have two short stories I would share that kinda illustrate why The Wheelchair Repair Shop is needed. The first is, one of my employees used a manual wheelchair and had a secondary chair. His primary manual wheelchair had a flat tire and he decided to go kind of, the recommended route of going to his primary care provider to get a referral to the DME Company to have his tire changed on his wheelchair. Basically, once he did that, he started the clock to see how long it would take for somebody to come fix his chair and being paid through insurance. It took three or four months to have an inner tube changed out of his primary chair. I think about that; there’s a lot of reasons why it is the way it is. That would also be another long podcast of describing why there are these breakdowns and the way the system’s set up. But, most people, would go to a bike shop and have somebody change the tube. It would cost a lot less. It would be a lot quicker. So, that was kind of an experiment that we ran just to see how bad is it really? A simple repair like an inner tube being changed shouldn’t take three or four months and it shouldn’t cost more than twenty-five dollars. It has such a huge impact. The other thing is a lot of people don’t have secondary chairs just hanging around that they can use. Another story is a good friend of mine, who uses a power chair, had the motors go out on his chair. It was a similar situation, it was a pretty new chair, and the motor should not have gone out. It took six months for him to get his chair back into his primary chair and, during that six months, he used another chair that wasn’t fit for him, or wasn’t suited to him. So, for those six months, it was really uncomfortable to be in a chair that wasn’t fitted for him and wasn’t his. When we’re able to quickly sidestep, or navigate, around all the requirements, that the medical industry requires of insurance, we’re able to get people batteries, fixed bearings, and get them back to living the life they love. Without the heartache and the frustration and the downtime that is characteristic of, working within– I’m gonna call it– just the medical industrial complex. Where there’s just so many requirements, so much paperwork, so much back and forth, other people, doctors, and insurance agents giving you permission to get your chair fixed, which is ludicrous.

Asher: It really does sound very ludicrous. Yeah, I can’t believe it takes at least about three months, four months, just to get something as simple as a wheelchair wheel to get like re-pumped or replaced. That’s so strange! I mean, if I think about it; if I bring my car to a repair shop and I’m like, “Oh, hey! My car has a flat tire”, instant change. But, when it comes to a wheelchair, it’s three- four months? What?

West: Yeah, and I’ll just speak to that briefly if you’d let me.

Asher: Oh, yeah! Of course.

 

Why Maintenance Isn’t Covered by Insurance

West: So, most health insurances and the centers for Medicare and Medicaid, don’t cover preventative maintenance. So, like you go to the shop to get your oil changed and your tires rotated, you pay for that out of pocket, but you know that’s standard care for your car, otherwise it’s gonna break down. Well, there is standard care that’s prescribed for your chair, but it’s upon the user. It’s their responsibility to do that. When you buy or you get the chair they give you the manual, or they give you some educational materials, on how you should clean it and all that. But, durable medical equipment distributors, suppliers, aren’t paid, aren’t reimbursed to do that work. So, they have to find other ways to make that pencil. So, it’s not a priority ’cause they can’t charge the end user to do that work. That gap causes chairs to break down more quickly and in the end that is beneficial to those durable medical equipment companies. Because, they make money off of selling new products and billing insurance for a new chair, billing insurance for a new set of push rims, or whatever. Versus doing frequent low-cost maintenance and repairs. That’s one thing and, then the other thing is, over the course of years, the many wheelchair repair shops that used to exist around the country, in the ’60s and ’70s have been, consolidated. So, that maybe there was 25 in The City of Portland and over the decades those have been bought up and consolidated. Now, in The State of Oregon, there’s really two main competitors. It’s “New Mobility” and “National Seating & Mobility”. Those two entities are owned by, “Private Equity”. Private Equity has just a totally different set of criteria to how they run their shops. What we hear is that the ATPs, people that are working on the ground, visiting people, trying to fix their chairs, at times there’s a lot of frustration at that level because their hands are tied. They’re not able to do everything that they want to do because of the corporate structure, of the organization they work within. So, people are feeling it all over, and speaking to a question earlier, that’s some of the larger context for why The Wheelchair Repair Shop is emerging; is that there’s a real need for it and there’s a large systemic breakdown in how we provide service and repair to wheelchair users.

Asher: For sure. It sounds, overall, very complicated in order to just get a wheelchair fixed. It sounds like there’s a lot of moving pieces, as well, in the whole process and such. 

Primary Vs Secondary Harm When Repair Is Slow

Asher: You both mentioned a little bit about what happens when a person has a broken wheelchair and even one of the stories where they had to move into an assistive living and not having that independence; what happens when a wheelchair breaks and repairs aren’t immediately available? Are there options for that person to be able to get another wheelchair, or would they have to go into assistive living, or are there other options for that person who needs to have a wheelchair to move around and to have that independence?

Tyler: Yeah, I can speak on this just a little bit. So, West and I often talk about this in terms of there’s “primary” harm and then there’s “secondary”. So, people have experienced physical harm because of a wheelchair breakdown. People sometimes fall out of their wheelchairs. We had someone come in who; this thing had gotten loose on their foot plate and it was getting jammed in the crack when they were trying to board the MAX. These are things that could have been incredibly serious injuries. So, that’s like the “primary” thing. The “secondary” things are all those downstream effects. West was talking about this person who got a new power chair and, even though it was brand new, the motors still went out and they ended up in this secondary chair. Those are the situations that can cause things like pressure sores, other secondary health effects. Oftentimes, when people do have backup chairs, it’s something that they maybe have purchased on Amazon or at Goodwill. So, they may have a custom fit wheelchair but, if that’s the one that’s broken down, their backup may be like a hospital style chair or like a folding type wheelchair that doesn’t really have advanced seating or it may not be sort of adjusted to their body. There’s a person who emailed me last week, who’s having some shoulder pain from the fact that they’re using their backup chair currently and it’s not fit to them the way that their primary wheelchair is. So, there are some immediate difficult things, but there’s also this whole long list of the ways that it can physically, “secondarily” harm people. But, I think I’ll pass it over to West because there’s also this whole psychological and mental component too of what happens when people are just stuck.

West: Yeah. Thanks, Tyler. That psychological piece; it is devastating. When you had plans to go out with friends, or go to church, or go to school, or whatever it happens to be, and then you’re just stuck, or you need to ask for help in some unconventional ways to get where you need to go. It just takes a toll. I could give you some really funny analogies, basically like, imagine if you were walking around with your pants on backwards or your shirt inside out. It has that kind of effect. Your wheelchair is intricately connected to your health; physical, emotional, mental. So, when it breaks down, you’re broken down. The other thing I wanted to share, if they have no other option, if the durable medical equipment company isn’t able to fix their chair, and they’re not able to rent a chair to the person on a short-term basis, that person will start making phone calls, start searching the internet, “How am I gonna get a new chair?”. They might be looking on Craigslist or Facebook Marketplace or they find us, Oregon Spinal Cord Injury Connection, or they’re connected in the spinal cord injury, or disability community, and they start reaching out , and asking for help. So, Oregon Spinal Cord Injury Connection has employed other people with spinal cord injuries as community health workers, and those community health workers are embedded in the community. They are people obviously with spinal cord injuries. Their work is to connect people, know people, find resources, be educated on these topics. Many times I’ve seen this where the team of community health workers starts asking and looking around for a chair. Some of the community health workers, they love doing this and almost every time we find one. There are chairs out there and people are willing to loan them, but health equity emerges out of community. It doesn’t emerge from institutions. It’s fortunate that we’ve built this network, but I don’t think people should have to rely on that. Health Insurance and the way that we provide wheelchair services and repairs; it’s just broken. People have to go to the internet and Craigslist to find a chair that will help them in a lurch. So, that’s also what happens after a breakdown. People start finding ways to get the help they need and that’s why the Wheelchair Repair Shop exists.

 

Misconceptions About Wheelchair Users

Asher: What misconceptions do people often have about wheelchair users or accessibility needs, in you guys’ opinions?

Tyler: West, I have like a mechanical answer to this. Do you wanna go first with your more direct experience as a wheelchair user? 

West: Sure. I really can just speak to my experience. misconceptions, I’d say, probably the primary one is that, as a wheelchair user, I’m not able to do something simple. I’m just thinking about opening the door and people want to open the door for me. I have come to accept that, but for a long time it bothered me. I’m like, “I can open this door it’s fine. Don’t everyone throw themselves at me so they can get the door open for me.”. There are times where someone does wanna open the door and I’m going under their arm. It’s just weird. It just gets weird. It makes me think about, “why? Why are people doing that?”. I think it’s because there’s this misconception that I can’t open a door, or there are other examples as well; pull a chair out from a table or something. I do appreciate the help and it’s because I’m in a wheelchair. There are other people that maybe can’t do that and they need that help. So, again, I’m speaking to my own experience. The other one that I’ve experienced is an iciness, a chill. Being in a wheelchair, there may be the sense that I’m very different from the person I’m standing next to on the bus or in the elevator or maybe there’s a curiosity about it, but they don’t wanna ask because they don’t think they should, or they wanna know what happened to you. All these weird questions interfere, at times, with the natural interaction. So, I will just take it upon myself to use humor or start the conversation if I want to. But, that’s another thing I think I feel sometimes; is a little bit of distance with random folks, because I’m a wheelchair user. So, not sure if that’s helpful. That’s been some of my experience.

Asher: That’s definitely helpful. Thanks for that, West. What are your thoughts on that, Tyler, from a mechanic perspective?

Tyler: Yeah. I Feel like the biggest misconception that I come across, and I’m speaking as a person who’s frequently fixing wheelchairs, I feel like so many people treat them as this magical object that they can never possibly understand. I think a lot of people really underestimate their mechanical ability, if that makes sense? I see this is also not unique to wheelchairs. This happens a lot with bicycles, with cars, with stuff like that where people are like, ” Oh, I could never figure out how to change a battery in my car.”. I bet you can. I bet with maybe a coworker or friend who can walk you through it you can do it. Anyway, I think one of the biggest sort of misconceptions about wheelchairs is that like working on them is gonna be this really complicated thing. I will admit sometimes it is. There was a power chair I was working on yesterday that was very, very complicated. But, a lot of things aren’t. Changing the tires on a wheelchair; okay, maybe it’s not something that everyone just knows how to do, but with a little bit of training and help they can figure it out. It’s not more difficult than it is to change the tire on a bicycle. Changing the batteries on a power chair is not really more difficult than it is to change the batteries in a car. If you’ve done that or maybe your dad showed you once; these things are not unlearnable, black magic kind of things. Sometimes people approach them that way. So, that’s one of the joys of the workshop and this kind of do it together model is to help people kind of break through that and teach them you actually can understand how this is connected to this and it affects this. Especially with a device that you use every day. People just don’t trust themselves a lot and it’s really fun to get to break through that.

Asher: Yeah, I totally agree with you both. Especially in today’s day and age where we can learn everything from the internet, from YouTube videos and people online, and it’s very helpful. West, I understand people trying to open the door for you, especially if you’re using a wheelchair. Not even that, like if your hands are full . At Portland Community College, where I’m working at right now, the doors are just heavy and super awkward to open in general, so I can’t even imagine having a wheelchair and needing to try to open that. But, the great thing about it, right now, is Universal Design. So, even if your hands are full, or even if you have a wheelchair, or whatever have you, they have accessible buttons that you can press and the doors just automatically open for you. Which gives a great sense of independence to people as well, which I really love. 

Policy Changes in Healthcare Systems & Insurance Processes

Asher: What changes would you like to see in healthcare systems, insurance processes, or public policy related to wheelchair repair, mobility, and equipment? You guys have mentioned just the law that you guys managed to pass last year, which is a awesome win! Are there more wins that you guys are looking forward to in the next coming year, or so?

West: I’ll start. I don’t know if there will be more wins. I don’t know what they are. One thing that I would love to see changed is preventative maintenance to be codified and prescribed and paid for by insurance. That would probably prevent a lot of breakdowns, keep people happier, and allow the durable medical equipment service companies to be able to do those services. I do think what we’re doing now is empowering people and The Right To Repair Legislation, that Tyler spoke about previously, is going to facilitate that too. So I don’t know if it’s just one change. I do think that the work that Oregon Spinal Cord Injury Connection is doing with the wheelchair repair is, over time, going to change the landscape in Oregon and give people more resources and empower people and even create some economic opportunities. So, yeah. That’s one thing that I’m looking forward to.

Asher: Is there anything you’re looking forward to, Tyler, or just echoing West as well?

Tyler: Definitely what West said about preventative maintenance should be a billable category. That would be a huge thing. The other thing that I think about a lot is; this isn’t directly related to repair, but what people call “being on disability”, receiving money from the government, whatever that looks like. ‘Cause there’s different programs, but in almost every program you’re subject to an asset cap. So, you can only have so much in your savings account. The way that it’s related to repair is that ends up affecting people’s ability to do things like buy batteries or pay for services. So, that’s just like a disability in general kind of thing. But, having those asset limits removed or even just updated and increased for the inflation and today’s modern economy. Those numbers don’t get changed all that often, so it’s still incredibly low. So, that would be really cool to see. The other one that I thought of was; we’re not the only place that got Right To Repair Legislation, and specific to wheelchairs. 2026 is so far shaping up to be a big year potentially for Right To Repair Bills nationwide, and many of them include wheelchairs. One of the cool things is that the two kind of biggest groups of people we see advocating for the right to repair stuff is tractor owners and power wheelchair users. So, it’s been really cool to see. A lot of times, these bills are getting started in these states where there’s a lot of agriculture and then people are able to build this coalition of wheelchair users, farmers, and all these people and say, “We’re all gonna work together to get a Right To Repair bill passed and we need to make sure it includes tractors, wheelchairs, cars, iPhones!”. So, that’s just an exciting thing to see. I hope all those bills pass and I’m excited to see the kind of future of those in more and more states.

Asher: Definitely! I look forward to it too! I love these type of conversations, because I learn so much from it and I had no idea that there was such thing as a Right to Repair Bill. I feel like that should be just a universal thing, or already established thing, in general. 

Big Goals For The Repair Shop

Asher: Going back to The Repair Shop, what are the goals for the shop in general over the next few years and are there any new services or programs, events that you guys are excited about?

West: I could take a stab at that and, Tyler, definitely feel free to say more. But, we have some short-term goals that I think we need to work out. By the end of the year, we’d like to add, or add more, volunteer shifts to The Wheelchair Repair Shop. I’d say if you’re listening to this and you’re curious. If you’re mechanically inclined, or you have a background in bike mechanic work; reach out to Tyler and we’ll introduce you to the work. We would love, in the next year or two years, to add a mobile component to this work. Many people that have their chairs broken down transporting to somewhere else; whether it’s driving or public transportation, it’s difficult. So, that mobile unit is helpful. That mobile option is helpful. I think those are the two kind of big goals to demonstrate that this Wheelchair Repair Shop pilot is gonna work. We need to create revenue to pay for our rent, pay for our inventory, and the services. Right now, we’re utilizing volunteers and we have a lot of really good used parts that we have, that are donated. So, we have to demonstrate our kind of business model. Maybe we can chat again in a year or two and we can share how we’ve succeeded. Tyler, do you wanna pick it up from there?

Tyler: Yeah, totally. One of the reasons that we’re really putting our energy into this effort is, because, previously, our workshop was once a month. Now we’re once a week. But, yeah. Just more volunteers to be able to be open twice a week would be incredible. Of course, long-term super big picture, we have 20 staff and everyone has a Sprinter Van and they’re driving all over the state to go fix stuff for a lot of rural people who can’t make it to a place like Portland. So, yeah. We have really big dreams. But, of course, baby steps in getting there. Our first goals are really, prove that this is a way that we can meet this community need and grow to the point where we’ve got enough availability that people don’t have to wait quite so long to come in to get service. We just need volunteers, and to do that, to be able to expand that little bit. So, those are our immediate goals.

How To Support & Donate WCRS

Asher: That’s awesome. I love that! The Wheelchair Repair Mobile. Be able to go around helping people fix their wheelchairs and stuff. That’s a great idea. How can people support your work or get involved in that effort, whether it’s through volunteering or anything else, and if listeners wanna learn more?

West: Yeah, definitely. Hit us up. Come check out our website; “www.wheelchairrepair.org”. Oregon Spinal Cord Injury’s website is; “oregonsci.org”. So, check us out definitely. We’d love your visit to the shop. We’d love a referral if you know somebody that needs preventative maintenance or simple repairs, come to us. You can also schedule an appointment. So, while we don’t have a van Tyler, and there’s another person, that will come to people’s homes and provide service to their chair there in their space. Donations; if you have a third wheelchair that is in good condition, let us know. We will definitely put it to use and get it to somebody who needs it. Donations in dollars; if you wanna become a monthly donor to this work, again, reach out. Those donations would go through the parent organization, Oregon Spinal Cord Injury Connection, and be directed to this work. Honestly, the idea of having a mobile unit is a longer term goal. But, if somebody does have a van, or wants to donate, knows a car dealership that has way too many cars, we would receive a donation and get that program moving in the right direction. So, those are some of the big things that come to mind. Also, I’ll just say one other thing, and Tyler I think I’m stealing your thunder here, but like tools, or pieces like shock vac, air compressor, ladder… there are things that we need, to do the work. So, that would be another way that people could donate or support our work.

Final Takeaways & Wrap Up

Asher: Awesome. Thank you so much, West!  Finally, last question, if listeners are to remember one thing from this conversation, what would you want it to be? I’ll start with you, Tyler, and then we can end off with West on that.

Tyler: I’m gonna get a little philosophical with this answer, to kinda close out. I think the biggest thing is; I was mentioning how I got pulled into this work, and I kinda joke about it as being “pulled in”, because I didn’t have any connection. But, I hope that everyone out there can find a way where your particular skill set and interests can be helpful to someone. It’s such a cool thing to have these moments of, “Oh, I can help with that,” and then you find out there’s all these people who you can help. I think that it’s been really just such a joy to get to work with everyone and find a place where you get to be useful. It’s a really great feeling. I also know times are tough and not everyone has the capacity to spend a whole bunch of free time volunteering and stuff like that. But, even still, there are still so many ways where people can get plugged in. So, I hope everyone finds that thing, that lights them up. I also secretly hope that it’s repairing wheelchairs and that you’ll come volunteer for us. But, whatever it is, that’s just a really exciting thing to see.

West: And if Tyler was philosophical, I’ll be very practical. “www.wheelchairrepair.org”. Check it out and come visit our shop. We’re excited about this work and we wanna share that with y’all.

Asher: Awesome. Thank you guys so much, West and Tyler. Once again, from the Wheelchair Repair Shop and also from the Oregon Spinal Injury Coalition. Thank you guys so much for the work that you guys do and maybe we’ll hear from you guys in a year to see how it’s going and if you guys got any more wins for the Spinal Cord Injury and Disability community. Appreciate you guys so much. Thank you so much for interviewing with us!

West: Thanks, Asher!

Tyler: Yeah, thanks for inviting us on. This has been really fun!

Outro

Asher: Thank you for listening to Let’s Talk!, Portland Community College’s broadcast about disability culture. Find more information and resources concerning this episode and others at pcc.edu/dca. This episode was produced by the Let’s Talk! Podcast Collective as a collaborative effort between students, the Accessible Education and Disability Resource Department, and the PCC Multimedia Department. We air new episodes on our home website, our Spotify channel, on XRAY 91.1 FM and 107.1 FM, and KBOO Community Radio, 90.7 FM.