Episode 24: Phoebe Chestna and Ben Wimett

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.”

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. For folks in our audience, ATP is an Assistive Technology Provider.

Ben: Yeah.

Phoebe: You’ve mentioned that a couple of times, so I want to make sure people know what that is.

Ben: Just again, making sure you have that report is really important, and that I want to stress.

Phoebe: Yeah. Thank you, Ben. You have gotten here to this point of advocacy for yourself after a long journey. So as a member of the Early Mobility Project, which for our audience, is a project at CDCI that focuses on providing, developing, creating early power mobility systems for very young children, I’m wondering if you can go back to your journey and those days when you first were receiving that electric chair, where were you using it, what experiences that led you to?

Ben: Sure. I think one of the things that’s very important to say is that I was always involved in decisions from a very young age, even if I didn’t make them. If I didn’t like something, especially my mom made sure that was key. Because even though I was young, I was taught if something doesn’t feel right or it doesn’t fit, let them know. So that was pretty key. For me, I was the first person in a power wheelchair in the school district. So as I moved through the school district, they would put me in buildings and realize, “Oh wait, there’s stairs to get to the other building,” or, “Oh wait, he’s moving to the new building, but the only way he can get into the building is going in the main entrance. Everything else has a five to six inch curb drop. We got to foot ramps in.”

So I was, from a mobility standpoint — and really just a physically disabled individual being mainstreamed for the district — I was a first.

So making sure things like I could get into the doorways to the classroom in my wheelchair was something that we had to factor in. And I will say that I, back in the early days and until I was in my mid-teens, we did not have a mobility vehicle at home for me. So my wheelchair stayed at school. We made it work. I had a manual chair as well, so we made it work, but both my parents, and probably my siblings would have a lot better backs today if we had gotten a mobility vehicle sooner, and probably a better ramp set up too, because even …

I was, I think, nine years old when we put in my first wheelchair ramp, and we just put it where we thought it was going to be the easiest to build it. And then we realized, “Wait a minute, this is the easiest place to build it, but we’ve got to go through 30 yards lawn,” and in mud season, that’s not easy.

Phoebe: For sure.

Ben: Or in a typical winter when there’s six inches of snow on the ground, that’s not easy. So a couple years later we ended up relocating the ramp and spending a lot more money and doing switchbacks and stuff to make the ramp work at a better location, but it was right off the driveway so that when I got out of a vehicle, it was right up the ramp instead of through yards and yards of mud.

I can remember … This always makes me chuckle. I think it was probably my second or third wheelchair clinic, I can remember I was being fitted for … They were doing both power and manual, and I was being fitted for the manual wheelchair and my mom asked if they could have a second set of wheels and tires so that I could have a set of wheels for inside the house that were clean, and then a second set that I could get muddy and dirty. Because I will say even in the early days, I took my power chair everywhere. Those things, in the early days, they were all metal, they weighed about 500 pounds. Even though they were the basic chairs, they didn’t have any plastic on them, and they could go anywhere. Man, I used to scare the bejeebers out of some of my one-to-one aids and people on recess duty, because I’d have people hanging off my wheelchair, and riding on the back, and doing all sorts of stuff they wouldn’t let kids do now.

Phoebe: Yeah, that’s great. Ben, I’m curious about those times on the playground and in school, and what having a power chair meant to you in terms of becoming independent.

Ben: I didn’t realize it at the time, but looking back on it now, especially before we got that mobility van when I was 16, when I was at school, that was my one time that I could be independent, and really … I could go on the playground and my one-to-one aid wasn’t always right there. I could even get into a little bit of harmless mischief and do things that able-bodied kids did. Build forts in out-of-bounds places in the woods, and just run around, and just … I can remember thinking, “This is the coolest thing ever.” Because it did. It gave me freedom.

And I do remember when we got that first van and I was able to bring my wheelchair home easily and also have that independence at home. I could do things like put dishes in the sink, and if I needed to, I don’t know, brush my teeth. I didn’t have to have somebody help me to get pushed over the threshold in the bathroom. I could just go in and do it, and it did. It opened doors. And then as I got older and I started doing things like going to people’s houses more regularly, because even if I couldn’t get it inside, if it was nice, I could hang out with them outside. And just doing that, I can remember … I didn’t appreciate it then, but looking back on it now, that was a huge piece of … Okay, I got the power mobility device, but I’ve also got the van. I really did have freedom and independence for the first time in my life.

And I do remember when I went to college, I went to [inaudible 00:19:45] for a couple years, before I transferred to Keene, they got degrees there and everything. But I remember that first night away from home, my parents were so terrified because it was the first time that I had been away that either my parents weren’t with me, or one of my brothers or sister wasn’t with me. And they realized when they dropped me off, and even though [inaudible 00:20:16] only about 25 minutes from where I live, both my parents completely lost it. And they knew I was going to be okay, but I’ll be honest, that first week or two or month or so in college, that was a learning experience, and that was a learning curve, because all of a sudden I was 100% independent. I didn’t have that one-to-one aid there either to keep me focused and keep me on task, and to tell me I had to get up and had to go to class, and I needed to do this and needed to do that. That was a learning curve as well. So that’s a great question.

Phoebe: Yeah, so much more than just the academics that you were there for that you were experiencing.

Ben: Yeah.

Phoebe: Ben, I’m wondering if you have any other experiences back from your early school days, your early days in the power chair that you’d like to share?

Ben: Yeah. I think one that comes to mind, Phoebe, is I think I was in fifth or sixth grade, and I don’t remember particularly what it was. I think it was during recess, and by one-to-one aid or special educator, or both of them, wanted me to do my PE and my physical activity during recess. I didn’t want to do that. I wanted to go build a fort with my friends and be a typical 11 or 12-year-old boy. And I remember saying, “I don’t want to do this today.” And they told me, “Ben, you have to.”

And I was being grumpy about it, so they put me in time out in the hallway and I was by myself, and I remember going, “Wait a minute. I don’t have to do this.” I took off, I realized, “I don’t want to do this. I don’t have to do this. I’m going to go do what I want.” So I took off towards the playground and I went around the back way, so it took them a while to find me and figure out where I was. But I remember thinking to myself, “Wow, this is my first time running away and there’s not an adult here, and I can do whatever I want and I’m still safe because I know where I am. I’m not leaving the cool grounds or anything, but I don’t need somebody with me and I don’t need somebody hovering over my shoulder all the time.” And that was really, that little act of rebellion was really my first … I can remember feeling like, “Oh my gosh, this is what it feels like to be by yourself.”

Phoebe: Yeah. What power that must have felt.

Ben: And I can remember my parents were so conflicted when the school called and were … I got in a little bit of trouble for me being defiant, but I don’t think I was rude about it, and I just wanted to be left alone and do what I needed to do. Or do what I wanted to do any other kid. And actually, I remember, because of that, my mom realized it and the team realized it. Instead of doing my physical therapy during recess, I came in before school, or I stayed after and did it. And that was a nice compromise.

I think that was the first instance, that I remember anyway, of knowing that I needed to do things to address my cerebral palsy, but also finding that balance between making sure my education came first, but also having that typical social experience. And I do remember that from that point on, one-to-one aides and staff were instructed that if I was in a social situation or had a social opportunity, to kind of back off and just let me do my own thing. It gave me a little bit more freedom. And I did.

I do want to go off on a tangent for a second. I did have some gym teachers and some science teachers, and some alternative type teachers that really would make sure that I could participate in everything. I can remember the gym teacher, Nick Montello, taught at NSUB for years and years and years. He had this adventure ropes course, and everybody would get to do it. And when I got to be in, I think it was fifth and sixth grade, that’s when you got to go on all the high trees, and he said, “Ben, do you want to do this?” And I said, “Yeah, but how?” And he said, “Well, everybody else is on safety ropes for when they fall. We’re going to use the safety ropes and hoist you up there, and then if you can pull yourself across, instead of using your legs, you can pull yourself across. If not, you’ll know what it feels like to be 30 or 40 feet in the air.” And that was really cool too.

I did alternative PE at Otter Valley, but I also did … The one unit I did normally is the gym teacher knew that I liked archery and I liked hunting, and I liked that stuff. So when they did archery, he figured out a way for me to do it too.

Phoebe: That’s great. I can picture Nick doing that on the ropes course with you, absolutely.

Ben: Yeah.

Phoebe: Yeah. That’s so exciting.

Ben: Yeah.

Phoebe: Ben, you’ve mentioned your family a few times and you’ve mentioned your own experiences advocating for yourself. I’m wondering if you have any advice for families and students accessing our systems now?

Ben: I think my biggest piece of advice is … And I actually asked my parents about this this past weekend. It came up in discussion. I asked them for the first time in my life, and I wasn’t even thinking about this podcast, but I asked both my mom and dad, we were having dinner, “How did you feel when you realized that there was going to be no magic bullet, and that I was going to have some barriers, and that I wasn’t going to just have some surgery, or there wasn’t going to be some device that could make me magically walk, and give me that typical able-bodied experience like the rest of your kids?”

And my mom said I was actually still in the hospital, and somebody had given her book on premature babies and she said, “Just from your mannerisms and the way your body was moving and the way your body was reacting at two or three weeks old, I knew.” She said, “I knew Ben was going to have cerebral palsy.” And it hadn’t even been confirmed that I had had a brain hemorrhage yet. She just had a hunch.

So my mom knew really early.

I think for my dad, honestly, it took a lot longer to accept. It’s not that he didn’t accept it, it’s that he blamed himself for us not being closer to the hospital when my mom was only seven months pregnant and she said, “David, I think these babies are coming.” He said, “No, they can’t be. I’m at work. I’ll be there in a little bit.” So I think my dad had a lot of guilt and a lot of baggage that he carried for a long time. 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.

I remember when I was a kid, we had this epic sliding hill at my parents’ house. Our driveway was just … It was like a bobsled run. And I was like eight or nine years old, and I was strong enough to do things like hold my head up, and I could slide okay by myself. And all the other … My siblings and a couple of our friends were sliding. I wanted to do it too, but it was at night, and my mom was really nervous. “I don’t know, David, Ben can’t really control the sled.”

And I remember my dad saying, “Beth, if he doesn’t learn how to live dangerously now, he’s never going to learn how to take risks.”

So he put me in the sled and he kicked me down the driveway. And I bounced off the snow banks. This was back in the eighties when it used to actually snow in Vermont. We had five foot snow banks in our driveway. And I went off one of the snow banks and into the trees. Well, it was pitch black. I kind of knocked the wind out of myself. So I wasn’t crying, but I was like: “Can’t breathe. I can’t breathe,” doing that typical panicking thing.

So my dad’s trying to find me, and we still talk about this to this day, because, “Ben, where are you? Ben, where are you? Ben?”

“Dad, you’re stepping on me.”

Phoebe: No way.

Ben: So back then, headlamps weren’t readily available or they were super expensive. So my dad, the next time I went out, my dad took one of those big giant Maglite flashlights and duct taped it to my head. And that’s how we found Ben when he went off the sled.

If we wanted to do things, we did it. If I wanted to go hunting, we figured out ways. If I wanted to swim, we knew I wasn’t going to be the world’s best swimmer, but the first thing my dad taught me how to do was hold my breath. When I was really young and everybody else had to help weed in the garden in the summer before we could go to Branberry Beach, I would be sitting on the ground weeding in the garden too. We figured out ways to do it.

And I think my advice to parents is if you get some diagnosis, if you get some scary things told to you by doctors, yeah, it’s scary. But if you love your child and you try to give them the best life you possibly can with the resources you have, they’re going to be just fine.

Phoebe: That’s great.

Ben: It may take extra effort and it may take … My mom was a rock star. She was at that school every day making sure that not only I had the services I needed, but my twin brother who was hard of hearing also had the services he needed. And then when we got older, we realized that my oldest brother had Tourette Syndrome. So my mom was always at that school and advocating for somebody.

I remember when she got a job. My junior year of high school, she got a job in the spring, but my senior year is when she really started working full time. And I remember I had an IEP meeting and she said, “Ben, I can’t make it, but you can advocate for yourself.” And I remember the biggest thing people were worried about was not that I couldn’t advocate for myself, it was my mom wasn’t there so that meant she wasn’t going to bring cookies. Everybody liked her homemade cookies, and they were all bummed that she wasn’t going to bring them, because she always took care of the people that took care of us. And I think that was important too. Because we did, we had a pretty big network around us and a community that really helped us when we needed help and when we needed resources. Rely on those resources, and it’s okay to ask for help. You’re not going to know-

Phoebe: Ben, I so much appreciate everything that you’re sharing today. I am very grateful for that. I do know you as an advocate and model for students through our work, and I’m wondering if you have any thoughts for young students.

Ben: Engage in your education and engage in your life. You can have your parents, you can have your guardians, you can have your advocates help you, but it’s your life. I went to the IEP meetings and the team meetings when I was probably first and second grade. At that point, I didn’t understand why I was there. But now looking back, I think I learned how to advocate, and I think I learned how to speak up for myself much younger because I was in those meetings, and I took an active role. And I’m not going to say that I always got what I wanted because that’s not the case. That’s life. But I think having an active voice really helped. And you know what? I’m going to give this piece of advice too. It’s not always going to be easy. It’s not always going to be rainbows and unicorns, but if you keep trying and you keep pushing forward, and if you try, try again, and just keep getting back up, and eventually you figure it out. Just keep pushing forward.

Phoebe: That’s great. Thank you so much, Ben. I’m really grateful for your time today.

Ben: No problem. Thank you.

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