In this episode, occupational therapist Phoebe Chestna interviews Ben Wimett.

Ben is a lifelong Vermonter, living down in Brandon, Vermont, with his dog, Pepper. Ben also has cerebral palsy, and works as an assistive technology provider with the Vermont Assistive Technology Project. And Ben’s here to share his stories of navigating Vermont schools (and snowbanks!), how power wheelchairs have changed over the years, and his advice to children with disabilities — and their parents. “The biggest advice I can give you is that if something happens, it’s not your fault. The biggest thing I can tell you is deal with the cards that you’re dealt. And I think the way my family did that is, yeah, I had to do things differently, but if I wanted to do something, we did it.”

https://youtu.be/zPvoFnHCZ0c

A full transcript appears below.

Phoebe: Welcome to Green Mountain Disability Stories. I’m Phoebe Chesna, and I’m an occupational therapist (OT) with the Vermont Early Mobility Project. I have the pleasure today of having Ben Wimett join me, and we’re going to be talking about Ben’s experience over the course of his life as a power mobility user.

Ben, I’m going to pass it to you to introduce yourself.

Ben: Hi. As Phoebe said, I’m Ben Wimett. I’m a lifelong wheelchair user. I will be 40 this year, and I got into a powerchair for the first time when I was four years old. I also work with CDCI as an assistive technology specialist. I cover the southern region, parts of the central region for some of our programs, and really wherever they tell me to go.

So that is me in a nutshell, other than three years of college. I’ve been a lifelong Vermonter. Don’t have any plans to leave anytime soon. Love the outdoors, hiking, fishing, hunting, photography. Yeah, that’s me in a nutshell.

Phoebe: Thanks, Ben. Really appreciate you being here to share your story. I’ll just reflect to our audience that I have been an OT longer than Ben has been on this earth, so it’s been really interesting to learn about his journey accessing healthcare, accessing equipment systems, and all of those pieces. I also have the pleasure of living in the same community as Ben, and being appreciative of what an outdoorsman he is. So thanks so much, Ben, for joining us.

Ben: Thank you.

Phoebe: I’m really hoping that you can describe your journey through wheelchair use and mobility, going way back.

Ben: What first approached me for this, I could remember going to Kids on the Move, or it was just referred to as VAC when I was really young, Vermont Achievement Center, and going down this long dark, dingy hallway to this room, and a bunch of people were sitting around in a circle in those little plastic colorful chairs from the ’80s, and they were all there and they kept asking me questions and all these funny things, and then they started bringing out wheelchairs and wanted me to get in it and drive it. And I remember my first … That was they wanted to teach me how to drive it, and I was like, why? It is just like a Nintendo. You want to go forward, you push it forward, you want to go backwards, you push it backwards. And I do remember they put me in it and instantly went, “Well, he’s four years old, but we’re not going to have to teach him how to drive.”

And then I remember just … Comparing then to now, back then when I was younger, there was no … For my first wheelchair that I remember anyway, there was no measuring of seats, there was no custom seat cushions, there was no choices. You kind of got what you got, and then hopefully there was a PT, OT person that would kind of help you make modifications. I remember … I’ve always leaned to one side, so my first seating modification, it wasn’t anything formal. Somebody took a piece of wood and took two brackets and put it on the side of my wheelchair by where my armrest was. So when I started to lean, I could grab it, and pushed against it and set myself up. I think my first wheelchair might’ve had a seat belt, but if it did, it was pretty crude. It was something that somebody tied in there.

Yeah. And now, fast-forward 36 years and I’ve got a wheelchair that’s full standing chair. I can get stuff out of high cupboards. I can walk around on sidewalks and level surfaces with my dog. I can do pressure relief stuff myself. I have lights, so I don’t have to worry about getting hit at night. I’m not going to say things have come full circle, because every time I think, “Well, wheelchairs have gotten as good as they’re going to get,” they come out with something different.

Phoebe: Ben, is accessing and obtaining a new chair, a new design, different now? Is it easier? I hope it is.

Ben: It’s so much easier. And I would say, even though for some people it’s still a wait, most of the time it’s a much faster process. I can remember my first chair, I think we waited over a year for it to get approved and built and delivered. I think I was about four and a half when it was fitted, and I think I was almost six when it was delivered. So it took a long time.

Now when you go to a clinic there are … Well, it’s different. They’ve kind of changed the way they do. It used to be every provider was there bidding for your business, literally. And it was kind of weird because you felt like a client, but you also felt like an account, because they were all trying to, “Oh, well, we can do this and we can throw this in, we can da, da, da, da, da.” And it was a very different atmosphere.

Now, which I definitely appreciate. You pick your vendor ahead of time so that when you get to the clinic and you get to the fitting, you don’t have three or four different varying opinions, and, “This is what we should do,” and, “This is the wheelchair brand he should go with.” As long as it is not your first chair, hopefully you have a pre-established relationship with a vendor. They know you, they have a good relationship with your therapist and they have a good relationship with you, and it’s a much more seamless process now. I would say even in the last five to 10 years that’s changed, and it’s a change for good.

There is just so many more options available too. When you look at the power bases themselves, there’s anything from simple to rear wheel drive, front wheel drive, mid-wheel drive, standing, reclining, anterior tilt, power leg rest, air chambers in seats. All these things that when I think about my first wheelchair seat, I think it was literally something that my mom picked up at Joanne Fabrics in Rutland and put some sort of cover on, because the wheelchair did have a pad that was built into it, but it wasn’t … I can’t quite remember, but it wasn’t tall enough, or it didn’t provide enough padding for me to sit in it all day. But things really have come a long way, and now there’s guards to help me not lean and things to hold my knees in place and to cancel out my spasticity. Everything’s measured and double-checked. When there’s a custom-fitted wheelchair now, they mean it, and it hasn’t always been that way.

Now what I struggle with is, even as an adult, and probably six, seven, eight wheelchairs in at this point, I struggle with finding a balance for myself that keeps me into that perfect therapeutic position, but also lets me have an active life and lets me still do things like lean over and grab something out of a cupboard, or bend forward to grab something. So when I’m in clinic, I’m constantly thinking to myself, “Okay, I see what they’re trying to do, but how is that going to impact my activities of daily living?” And I try to work with a therapist to find that happy medium.

So yeah, and it’s good. I have therapists that know that I do have a pretty extensive background, so they’re like, “All right, Ben, you know what you need. Just go.” And I think finding a therapist that you work with really well, as well as an ATP from your vendor, and assistive technology practitioner, is really key. My practitioners know that when I have a fitting, I know what’s out there. I know the new technology. I’m going to ask, “Is this appropriate for me?” Thinking about families, and especially early mobility, I have a little bit of advice. It’s important to educate yourself, but it’s important to realize that you don’t have to know everything, especially if you have a relationship with your OT and PT, they’re going to know you and they’re going to work with the ATP from the wheelchair vendor, and they’re going to reiterate what they know about you, and they’re going to be your best voice. So you don’t have to know everything. You don’t have to be like me and start doing your own research.

Phoebe: Yeah. I just want to interrupt you for a second...