More MS news articles for August 2000

Peter Axelson: Design and Advocacy for Active Living

By Gary Karp

Peter Axelson
Judging from Peter Axelson's schedule, it would be easy to imagine him as a hard-core type A personality. You know, the driven type -- intense, fast talking, obsessed.

Not at all. Axelson is a gentle soul. Quiet, easy to be with, thoughtful and gracious. And very clear about what he's doing. Peter Axelson and his company, Beneficial Designs, have their hands in an incredible array of projects to help people with disabilities be more active in an increasingly accessible world.

Axelson has the vision, and the skills, to see a problem or idea and just get it done. This led him to develop the Arroya Sit Ski, the first commercial adaptive snow ski, which evolved into the mono-ski, now a fixture of international competition. Axelson himself was a member of the U.S. Disabled Ski Team from 1985 to 1992.

Axelson and Beneficial Designs have also developed back supports and cushions for wheelchairs, handbikes and hand controls for airplanes or manual transmissions. The list goes on.

Axelson's daily exercise habit keeps him pretty buff. He's a natural blonde. His hands are stocky and strong. He's also a man of faith, a man who says grace before a meal.

When he broke his back at T-10 in a fall during a mountain climb in 1975, he was a cadet at the U.S. Air Force Academy. Lying there, fully aware that his spinal cord was injured, he knew he was facing the boundary between life and death; he could choose to go either way. "I figured God must have a purpose for me in this," he says. So he stuck around.

He went on to graduate from Stanford with a degree in product design and mechanical engineering, establishing his business while still in school -- and while competing as a skier. Type A indeed.

Beneficial Designs is located in the hills 15 minutes from Santa Cruz, Calif., on 10 acres Axelson bought in 1980.

Gary Karp: All of this started with the Sit Ski. How did that come about?

Peter Axelson: I was with friends at Winter Park in Colorado. They sort of tricked me, saying, "Well, we need you to test this device." It was a Norwegian sled, a little fiberglass shell with curved up sides that you sat in. It went as fast sideways as it did forward. It was fun, but I said, "This thing doesn't work! I think I could make it work better." And thus, the Arroya Sit Ski.

Karp: So how did it evolve into the mono-ski?

Axelson: There were some Germans who were mono-skiing, using a tractor seat with a U-shaped spring. I didn't have the balance for it, but as I interacted with orthotists and prosthetists, I realized that there were ways of connecting through the seat up to the torso. As soon as I had that idea, I went back to the mono-ski idea. And then I had an injury from being bounced. It had a spring, but it didn't have any dampening. One of the guys working with me was a motorcycle racer, so we got some motorcycle shock absorbers and figured out how to put that into the mono-ski. In 1986, at the world championships, it was the only mono-ski in the world with a shock absorber. It was a technological advantage over all the countries.

Karp: You had a pretty serious career then as a competitive skier.

Axelson: And when I competed on the U.S. Disabled Ski Team, I was literally planning my projects around the fact that I was going to be gone weeks at a time in the winter. To do it now, you have to do it full time.

Karp: You had to run your business at the same time?

Axelson: Every night, after the racing and the training and the coaches meeting, it would be check the voice mail and review the faxes. There wasn't any time to go out and be part of the gang at the bar. I was very focused on keeping Beneficial Designs going, so I was probably viewed as being antisocial.

Karp: A nondisabled athlete has sponsors, so how tough is it for a disabled athlete? What are the resources available to them?

Peter Axelson and Gary Karp Axelson: I don't think any of the national teams can afford to say, "OK, you're on. Here's your expense account!" I know they're going through a real struggle right now with the U.S. ski team trying to push the disabled team off, because I think they're afraid that they're going to have to support the disabled team to the same tune that they support the alpine team.

Karp: After your injury, were you doing athletics that didn't involve adaptive devices?

Axelson: Before I fell, I was into skiing and tennis and ice hockey. So when I first got out of rehab, I got a copy of Sports 'N Spokes and saw swimming. So I got hooked up with the disability sport team at Craig Hospital. It seemed like that was the only outlet I had for sports. I didn't like basketball. Never did.

I found that to be a really good way to learn how to function again. It helped me learn how to get around in the world. Most of the people I met had been in wheelchairs for a long time. The best transfer techniques I learned were from a quad who showed me how to get off the floor, not from a therapist who showed me how she thought I was supposed to do it.

When I got to Stanford, I needed a way to work out. They had a swim team, so they gave me a lane and a coach, and I worked out every morning. It's not like I had to argue or go to court. There was a person there who was interested in helping to coach me, so she did.

Karp: All this began with athletics and recreation, but then it got more involved in the daily wheelchair.

Axelson: Seating is the area we've worked on the most, for manual and powered wheelchairs, to make the daily chair more comfortable. That was really my own desire -- to make my own personal chair more comfortable. Anybody that sits all day long is going to have back problems.

Now my goal has remained focused on getting support for the work. We were putting papers out there so they could see that we back the work up with science. With an objective measure of how effective is this back support -- like the one you're wearing on your wheelchair (Beneficial Design's PaxBac, distributed by Invacare) -- that it increases your efficiency when you're pushing up a ramp, for instance.

Karp: I'm assuming that, like me, the first chair you were in was the old E & J so-called "lightweight." When you got in that chair, did you think, "There must be something better than this!"

Axelson: I just tried to figure out the most flexible and adaptive chair and started moving axles around and stuff like that. I had my hands full designing the early sit skis and became friends with Marilyn Hamilton (of Quickie Designs, one of the pioneers of the lightweight wheelchair). Marilyn and her group were making great progress with their wheelchair designs.

I don't want to look at competing with what other people are doing. Somebody's doing a great job, then I say, "Great! Can I try one of those? You wanna try one of these? This is what we're working on."

Karp: A very cooperative spirit.

Axelson: Yes. There are four or five companies now that continue to evolve all these mono-ski designs. And I think that's great. If I had patented the mono-ski with the shock absorber, I'd be in the business of negotiating who gets to manufacture mono-skis with shock absorbers, and that's not what I wanted to be doing. Instead, I'm chairing a committee that's developing standards for the safety and evacuation of those devices from lifts.

I'm used to people reacting to things that I'm doing as sort of crazy. The head of the design division at Stanford saw the sit ski and said, "Well, who's going to use that?" A person who encourages all this incredibly innovative thinking. Then, in two years, there are 50 people out at the national championships.

I can just see what the potential is for something, and I have that gift or that ability to see where something can go, even when it doesn't work the first 10 times. I can show you the 40 back supports that went into the PaxBac that you're sitting in now.

Karp: I had the experience in college of running programs, doing stuff I enjoyed, until I found myself a "leader," sitting on committees and writing a lot of reports. It wasn't so much fun anymore. That seems to be what has happened to you.
 

Axelson: Oh, it's a struggle. Most things are 90 percent paperwork and 10 percent doing and seeing the fruit of your work. Regardless of what anybody does in his or her work, there's a piece of it that's fun and exciting, and then a lot of it is follow-through and paperwork and persistence.

Karp: Do you see your work as a form of disability advocacy?

Axelson: I'm an advocate through design and development of standards.

Karp: It's a nonadversarial form of advocacy.

Axelson: Right. I never wanted it to be Axelson vs. whatever. I prefer to be a person that tries to analyze the situation. How steep should things be, or how flat should they be? How should they be designed? I'm the researcher who helps develop the protocol to do the testing to figure out what's an appropriate standard.

Our work with trails is another good example. We wanted to create a way to develop the nutrition food facts label for trails. So you can decide, "Well, I can do 4 percent average grade for one hour," or however long it's going to take to go 1.3 miles, and therefore you go on this trail. Or, "I can't do this trail alone, so I'll do it on my mountain bike chair with some friends along."

Have you ever experienced discrimination in your own life that made you want to become a frontline advocate?

Karp: I had a very frustrating experience buying a house. I had so little to choose from, unless I was willing to spend a lot of extra money to adapt a place. What about you?

Axelson: I'm a certified, level-three adaptive ski instructor. I wanted to get my certification as level-three alpine instructor, which would certify me to teach anyone to ski. I thought it would be a matter of course. I went to do this in the northern Rocky Mountain region of the Professional Ski Instructors of America, and the examiners had never seen anyone in a mono-ski.

Karp: And here you are, a world-class skier.

Axelson: Yep. So I went through this whole exam. Skied the best I'd ever skied, in every level that I could, but there were things I couldn't do. I couldn't do step turns, hop turns or any of the demos that a two-legged skier would do. But I can use video, use somebody else, critique what's right or wrong about what they're doing. I can describe it, but I can't do it.

Karp: So they denied you the certification?

Axelson: A couple of weeks later, I got an email saying that, sorry, current policy is that you have to be able to demonstrate all these things. I thought, "Huh, it doesn't seem right." There were already people who had been certified, so obviously there's inconsistency.

Karp: Are you going to fight it?

Axelson: Well it's one of those things where, how much energy are you willing to put into leading the battle? It's like the guy with the golf cart (Casey Martin). It's exactly the same thing.

Karp: You talked about sensing a purpose from God when you were injured. How did your fall impact your spiritual life?

Axelson: It didn't cause me to question why God was putting me in that place. But I did find it hard to figure out where I fit sometimes in a spiritual way. I can completely understand why so many people with disabilities have such a negative attitude towards organized religion. I've been to so many places where they say, "If you'll just believe, you'll be healed," or, "You're being punished." That kind of perspective is not what God is about. He's not about punishing us. He loves. He'll cause us to suffer in certain ways if we're off track, but only because he cares about us.

Karp: There are people out there who make a sort of religion of cure. They feel they can never be whole, that their body was meant to be "normal."

Axelson: I don't feel that way at all. Yeah, I'm thinking about the regeneration research. I've been a reviewer for the Spinal Cord Research Foundation for the PVA for 20 years. I've been labeled sometimes as being a non-cure advocate because of my very strong opinion that money should be spent on some of the complicating factors related to disability and on assistive technology development. My personal view is that I want to continue living life now with the function that I have. It's not an option for me to wait for a cure.

But the research is also about pain management and spasticity and bowel and bladder and sexual function, so for a lot of people, walking is almost at the bottom of the list. I'd rather have all those other issues addressed before I'm worried about trying to walk. I don't know the politics of regeneration research. I just know the need and appreciate that Christopher Reeve is bringing much-needed emphasis on the cure. I also hope he appreciates the technology that lets him do what he does.

Karp: People are upset that he fosters the societal view that if you're disabled, you're broken.

Axelson: But he hasn't been injured that long. He's reacting in a really human way. If anybody thinks back to what it was like the first years of disability, you needed help. You ask for help! There's a huge adjustment. Once you've been in a wheelchair for 20 years, your priorities start to change.

Karp: Some people get stuck in the idea that if they accept their disability, they have surrendered to it.

Axelson: Right. Like the issue of when are you going to use a powerchair.

Karp: Yes! I'm trying to psychologically prepare myself to accept that day!

Axelson: Because we need to prepare ourselves and be willing to accept help. I've had times where I've had to use a powerchair, after an injury from skiing. But I have bungee lines on my chair now. If we're going up a hill, I'm not unwilling to say, "Hey, will you give me a little tug?" I've experimented a lot with it. People say, "I'm not pulling you." But I say, "You're keeping my momentum going between pushes. It's making a huge difference."

We're all unique. You really don't want a room full of Peter Axelsons trying to solve a problem! Beneficial Designs would not be able to do what it does.  We've got people who are into attention to detail and all the minutiae. That person's important. People who are paying attention to completely different issues than I would pay attention to. It's about doing things together with people, because we all need each other's help.

ENDNOTES

For more information, go to the Beneficial Designs Web site.

Gary Karp is the author of the highly regarded "Life On Wheels" (O'Reilly & Associates), published last July. He is an ergonomics consultant and founder of Onsight in Marin County, Calif., as well as an accomplished musician, amateur juggler and a wheelchair user since 1973. To order his book, visit Life on Wheels.

(This story was posted on 9 Aug 2000)