How a visually impaired bicyclist adapts to change
Michael Stone is a bicyclist, a Triathlete, and owner of Colorado Multisport, a bike shop in Boulder. He’s also legally blind with a degenerative eye disease. Michael is a public speaker, and talks about living with adversity and uncertainty, and is a member of Bicycle Colorado.
We sat down to chat with him about riding as an adaptive cyclist, his love for biking and more in our interview below.
When did you first start biking and what kinds of bicycling do you do? Are you primarily a mountain biker?
I can tell you flat-out it was August of 1997 when I moved to Boulder. Obviously I grew up riding bicycles, but when I moved to Boulder I only knew two people here and one of them said “You have to have a road bike.” So I bought my first road bike. I didn’t know what I was doing with it, I didn’t know how to shift, I didn’t know anything about riding … And then eventually about three years later I found Triathlon, which really appealed to me. I found that by accident. It’s the one sport where you can be a beginner or average swimmer, biker and runner and still be a good triathlete just by persevering.
You can’t just go jump in a bike race, there’s so much technique, it’s so competitive, it’s just not for everybody. And I was never going to be a competitive cyclist, nor did I want to be. To me, I just wanted to ride a bike. I liked being able to identify with that feeling of the inner child. When you’re a little kid, you get your new bike, it was so fun and a bike was freedom, going to the store, you can do things. Biking in Colorado was equally that way, you could go bike up a mountain, you could go to a coffee shop, you could do so many things with it. And that’s really to me what cycling was … To me it’s always been a recreational thing that I found and entered into competition with. My favorite is being off-road. My life is very tactile, being visually impaired, so [it’s] what I can feel, and feeling the dirt under your tires is something really, really special. But road biking is just wonderful. You can just cover so much more distance, especially living out here.
Could you briefly describe the eye disease that you have and how it affects your vision?
It’s an inherited retinal degenerative condition called retinitis pigmentosa. The typical form of it is that you lose your peripheral vision and then it works its way to the center. The one that my brother and I have, we lost our central vision first and then it worked its way out. We lost our cones first, and they are for day vision, color, and depth perception. Next [was] peripheral vision, which is your ability to see light and dark contrast and movement. I have a little bit out of my right eye, I can still see contrast at close distances and still pick up movement and that’s how I get by. I’ve been living off of motor memory for a couple of decades.
Were you riding prior to your vision starting to be affected? How was that transition to guided rides or other accommodations?
I’ve always referred to myself as the “Forrest Gump” of the visually impaired world. Meaning, you know how he sort of navigated life and it was all he knew, so that was me. I was legally blind before I knew I was legally blind, so this was just normal to me. So what had happened was eventually, things came more and more into my awareness. I thought I saw better than I did. It was messing with me because a lot of doctors would say, “You shouldn’t be able to do the things you do.” And then they’d follow up by saying, “I’m not saying you shouldn’t do them, I’m saying you shouldn’t be able to.”
I didn’t want to be foolish, and irresponsible and/or put anybody else in danger. So I started to question these things and decided to start taking as many safety precautions as I could. But what ends up happening is that every time I try to do things, there’s always that one thing I didn’t consider. Like, what I’m going to be able to see or what I’m not going to be able to see … It’s been this constant state of a new normal. For example, I lost my left eye[sight] kind of overnight. I was doing an XTerra, which is an off-road triathlon. We pre-rode the course the day before and I was doing it guided and I was fine. The next day, we’re on the same course and during it I kept bumping into things on my left. I’m like, “This doesn’t make any sense, this is not an area I should be struggling with.” All of a sudden I put my hand in front of my eye and it was gone. My left eye[sight] was just literally gone. It was a very subtle change that had exponential effects
I’ve been living on borrowed time for a long time for what sight I do have. I’m just continuing to make the most of it.
Did you worry about being able to bike after you learned of your diagnosis?
Absolutely … I worried about it, and I still do. Most of the riding I do is guided. I have someone with me who is giving me audible cues to tell me where to go. And I’ve been continuously refining it to a point where [the cues are] all directional. Most of the time if it’s on the road, it’s just “get behind me.” I don’t need to know “rock” or “tree” or “unicorn” or whatever is in the road, I just get behind the person and I follow them really closely. Being visually impaired, you learn how to respond very quickly to both audible cues and tactile cues, being nudged one way or another. If someone taps me, I’m going to move. When I race on mountain bikes, we use headsets that are built into the helmet. Nothing that impairs our ability to hear anything outside, it’s nothing that goes in the air, doesn’t cancel any noise, and then if the person is far enough in front of me, it gives me time to be able to respond.
A lot of doctors would say, “You shouldn’t be able to do the things you do.” And then they’d follow up by saying, “I’m not saying you shouldn’t do them, I’m saying you shouldn’t be able to.”
What do you find that people are surprised to know about you as a bicyclist with a visual impairment? Or what do they assume?
What I always do is I put myself into their shoes. Because it’s easy. If I saw somebody who I knew was visually impaired and I saw them riding a bike, especially independently, I would do two things. One, I’d wonder, “How are they doing it?,” and two, I would just start making assumptions of what they can and can’t see. But there is nothing obvious about it.
What people don’t know is how it feels. One of my doctors, Vinit Mahajan at Stanford, said something really profound to me a couple of years ago that really impacted me. He said, “You know what? I’m the only person in the world that knows what you can and can’t see. How you do it, I’m not exactly sure. But I can’t tell you how it feels.”
We tend to make assessments and judgments of what people can do. And impose limitations on what someone can do.
You talk to other folks who have the same disorder, you have a book, it sounds like you’re writing another one—given all that context, how do you support other bicyclists with visual impairments and bicyclists with other disabilities?
I don’t really differentiate between anybody with a physical or mental or any kind of challenge. We do a lot of work here in the store with other kinds of para-cyclists like full leg amputees, partial leg amputees, arm amputees, we have to figure out how to do it. I have people who are hemiplegic, meaning they only have use of half their body, so we have to adapt their bicycles to where they are. I support them first and foremost with tech, like let’s retrofit your bike so you can go out and ride. Some people choose to ride with prosthetics, some don’t. Then it all comes down to developing the technique that works for them.
So basically we find out what everybody’s strengths and challenges are and then we find out how to compensate for it. All of us, whether we’re fully abled or not, are working with what we have. Some of us have fear, or anxiety. We’re working with the best of what we have and sometimes the worst. What I do in supporting other people is to say, “Okay, let’s figure out how to make this work for you. We will figure it out.”
If it’s a visually impaired person, obviously somebody who’s completely blind is going to have a different set of circumstances than somebody who has partial sight. Can we figure out by using sunglasses, or visors, how quickly by looking at your front wheel can you respond to something that comes into your field of view. So if you can’t look twenty, 30, 40 feet in front of you, can you look two feet in front of you? So if that’s the case, let’s make sure you have somebody in front of you so you can ride their wheel and be able to respond to it fast. And then hone those skills, let’s work on your reaction time, how fast can you react to this? It’s to really find what techniques work, and it’s a lot of trial and error until we find what works. And be super patient.
What made you decide to start a bike shop?
Again, to some degree it was fear. There was a commonality that I started to realize and primarily when I was working on my book Eye Envy. The same year that I released Eye Envy was the year that I became involved with Colorado Multisport. I wanted to stay connected to this community. It’s the thing that I enjoy most. Getting into cycling when I moved to Boulder brought me into this incredibly larger world. And I still relate more to the beginner. I started to realize, how can I stay connected with my community if I’m going to be sitting in my house all the time?
And I’ve seen what happens to people. A day became a week, a week became a month, a month became a year and they never left the house. So the bike shop was a way for me to stay connected but also with all these years of learning and experiencing, to be able to share that with others, especially newbies.
And then of course being able to hear the stories of where they rode today and all the adventures that they had. And it’s incredible to just be right smack in the epicenter of all of that.
It really was never meant to be anything other than for me to be able to connect with amazing people, both the people I work with here at the store and then of course our customer base.
What does bicycling mean to you? What has it done for you?
It helped me find both an inner athlete that I didn’t know existed, for one thing. It helped me find that there’s a wonderful level of healthy fitness. And then connectivity. Being able to connect with other people on that very, very intimate level that we talked about. Some people would call that freedom, independence, adventure. It just brought me closer to the natural world which includes, obviously, people and everything else. That’s always what cycling has been. A part of it is really just fun. That and just staying in touch with your inner child. You find yourself smiling.
I do have one funny story that I’ll leave you with: Years ago, I was training for an Ironman and I used to do the same long ride every week. It was out toward Carter lake, in Boulder out toward Larimer County, and there was this road, very rural out there. For whatever reason, week after week I got to this area where in my mind’s eye, I was looking at a rider on the side of the road. I was looking forward to being able to stop there and help them, like making sure that they had whatever they needed to fix their flat or whatever was going on with their bike. This was well before I had the store. And I would say “got everything you need?” and the person wouldn’t answer. So eventually I’d realize I was stopping at mailboxes. It wasn’t exactly a person.
Well, after three weeks of making that same mistake, I said, “Okay, I’m not stopping here, I’m going” because it always felt just different enough every week. And sure enough, I passed it, and I heard from behind “thanks a lot, a**hole”, and sure enough it was somebody on the side of the road who needed help and I didn’t even ask. I turned around and I tried to explain to them, but that answers your other question about the confusion that people have. I’m trying to explain, “Listen, I’m visually impaired, I don’t see that well, I see well enough just to get by,” and I got nowhere with that person at all. I gave them a tube and CO2 and I went about my day. You’ve go to laugh at yourself.
Anything else you’d like to share?
We pigeonhole people into “Every cyclist is x” and it is anything but the case. There’s really a very broad range of people. There are people that are still trying to do things visually impaired and / or with other things. And you name it, I think I’ve heard it all at this point but I’m sure I haven’t. As soon as I think I have, is when somebody comes in wanting to ride in a unique way.
In my neighborhood in north Boulder, we see more families biking together. I mean, that’s how we grew up. We went on family bike rides, we rode around the block, it wasn’t like we were out there for hours but it was really fun and we’re seeing more and more of that now. I rode my bike to school until I could drive. I wish I continued to do that, but there was probably a time where it was uncool. I still remember my bike lock combo from when I was in second and third grade.
I spend most of my time as an advocate for people with “living losses.” Anything that you might have that you would have to live with, and it could be a disease, anything. But I learned that if you can keep yourself moving on some level, I don’t care if it’s just going out for a walk, or just to go ride your bike around the block, it’s spectacular. But there’s something very intimate about riding a bicycle. It’s different from other sports. What we’re seeing is a lot of new people getting on bikes. Here at the store for example, we’re about to put our demo bikes that we’d use for rentals during this time period out for sale just so people can have an affordable nice bike. Hopefully it’ll be an entry to a larger world for them.
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