In Atlas ObscuraSeries of questions and answers from Exploration for allwe talk to everyday adventurers and intrepid world travelers to find limitless wonder.
“Come in, find a seat, I already have one,” Kory Macy says with a smirk, nodding toward her wheelchair as she leads the way to her living room. A large window overlooks a picturesque wooded area on the north side of Madison, Wisconsin– but it’s what’s inside that catches the eye. The modest apartment she shares with her husband John and her two cats is filled with framed artwork, photos and other memorabilia from her travels across five continents. There’s a whole wall of selfies: dog sledding in a snowy landscape, sitting on a Galápagos beach while seals laze in the background, riding an adapted bike, kayaking, skydiving. On bad days, Macy says — and there are bad days — the photos remind her of what she’s capable of and all the journey that’s left to go.
Almost 20 years ago, Macy, now in her 40s, was diagnosed with a rare degenerative disease called ataxia with oculomotor apraxia type 2 (AOA2). Over time, AOA2 reduced his mobility and impaired his speech. But the disease did not stifle her desire to travel or her pleasure in living new experiences. Macy’s makes the most of accessible travel options and is part of a growing community of like-minded explorers.
Atlas Obscura spoke with Macy about how she chooses her adventures, what accessible travel means to her, and that time she thought she fell out of a plane at 20,000 feet.
Why are you travelling?
First because I can. This is my honest answer. I like meeting people. I’m a people person—obviously, I’m a social worker. So I like to meet people from different regions and see different parts of the world.
I also come from a family where everyone does crazy things. My grandmother climbed Kilimanjaro and crossed the Sahara on camels. My aunt rode a bike a few years ago Burma. When I got my bat mitzvah, I had the choice of having a party or going to Israel. I went to Israel. And my mother said to me, “Well, if you’re in Israel, you might as well go to Egypt.” Now I go paragliding. I did skydiving.
For many people, the mere thought of skydiving is terrifying. What made you decide to try?
I’m bored. And I usually get a boost when someone says, “You can’t do that.” I say, “Yes, look at me.” So I found a company called start skydiving in Middletown, Ohio, which works great with Wounded Warriors. They had a suit with a drawstring at the bottom so when you land they pull the cord to make your legs go up (when you hit the ground).
I was sitting on the edge of the plane at 20,000 feet and I didn’t hear the guy say, “We’re leaving. Obviously it was in tandem, and I was attached to it, but all of a sudden I was flying through the air. And my first thought was, “Oh shit, I fell off the plane. I’m at 20,000 feet. I will collapse. So of course I realized he was behind me. It’s all because I’m bored.
Do you usually travel alone or in a group?
I mainly travel by myself. I don’t want to slow anyone else down. Inevitably, you’re going to run into someone who isn’t patient, and I don’t want to blame myself. I prefer to be alone and take my time.
There is an inclusive non-profit adventure in Minnesota called Wilderness Surveyand I canoed and kayaked with them, and I went to Belize and to Kenya with them. Kenya left a big impression on me. First of all, it was wonderful. I had also just gotten into a wheelchair, and it meant a lot to me to go, because it’s not something that many people in wheelchairs do. Then later, when John and I got married, on our honeymoon, I thought, “Well, I’ve been on the equator in one hemisphere, let’s go to the other.”
Is that how you ended up in Ecuador?
I just googled “disabled travel in South America” and found Ecuador For all (now Latin America for all). The vice-president (at the time, Lenín Moreno, who later served as president) is a paraplegic and he started giving wheelchairs to people who could not afford them, by making cuts in the sidewalk. (That changed things a lot.) There are ramps now. Some of them are death defying, but there are ramps.
And you recently spent three weeks in India. How was this experience?
I’ve found capable planet, which organizes trips for disabled and non-disabled people of all kinds. I had a guy that was with me for those three weeks, and his job was to push me, pull me, whatever, up ramps and over things. I went rafting in the Ganges and saw pictures of how they lowered me (into the water). I’m so glad I closed my eyes (laughs). They put me in a small seat, picked me up and carried me onto the rocks. I really didn’t like being picked up and carried, but you gotta do what you gotta do. I think it’s good that I couldn’t understand what they were saying. I really didn’t want to hear “Oh shit, I’m dropping her.”
How does AOA2 affect you?
My cerebellum, which controls motor control, is basically dying. Of many different ataxias, this is one of the best to have; some cause multiple organ failure. No one really knows where I’ll end up. My speech is pretty clear right now, but when I’m tired I really graze my words. I can’t hold a pencil properly. I hold my glass in both hands like a small child. It bothers me, but I choose not to think about it because it’s no use.
So, what are you thinking about, your next trip?
We are thinking of going to Peru, to Machu Picchu. We plan to return to Islands of the Apostles (in northern Wisconsin) for kayaking. I have a degenerative disease. I don’t know how fast, or how quickly, I’m going to deteriorate, so I try to get in as much as I can, before I can’t.
What frustrates you about the state of accessible travel?
If something is technically accessible, I can understand it. Like with the toilet which is just a hole in the ground – I hold my wheelchair thinking please don’t fall, please don’t fall. I also wear incontinence underwear, because when you have to go, you have to go.
But traveling with a disability is much more expensive. There is no cheap way to do this. There is no backpacking and staying in hostels…. I really don’t live beyond my means. I have no children. I save. But we are considering a cruise around Scandinavia which is very expensive. I should probably sell a kidney. The only accessible room is a junior suite. So you have to pay the junior suite price even if you don’t want it.
And around here, a lot of parks are accessible: federal parks, state parks, they have accessible cabins, accessible trails, but how am I going to get there? There is no transportation if you are not driving. So there are a lot of accessible things, but there are also a lot of barriers to those accessible things.
What advice would you give to someone, disabled or not, who reads this with a bit of envy and thinks “I wish I could do that”?
I had to learn to think outside the box. John and I just cruised Greece and Turkey, and I knew it would be tough – there are hardly any sidewalks and cobblestones everywhere. So I asked one of his friends to come with us.
When we were in Scotland, we had a dinghy up to the dock, and then you had to climb stairs, these really steep metal stairs. So everyone went up and then the stairs had these little shutters that they pull down and it becomes a big ass ramp. Don’t get me wrong, it was still steep, but it was a ramp. Just get off the beaten track.
When I was in Ecuador, I had a special wheelchair – it was still my wheelchair, but you could attach metal poles to it and it became like an rickshaw. So I was able to go to parts of the Amazon jungle that way. I was able to hike in the mountains of Yellowstone National Park and in the jungle of Belize. We went to Boundary Waters (Minnesota) in the winter and they put me on a dog sled. I could see the trails in the middle of winter, with the trees covered in snow. Adapted Sports In Durango gave me a scholarship and I was able to go skiing. There are many things you can do, but you have to want to do them.
And even if you don’t want to, you have to think about what you need and be really honest about it. And you also have to adapt… If you choose to focus on all those things that are not accessible, you will not appreciate what is accessible and what you can do.
This interview has been edited for length and clarity. If you or someone you know has gone on an accessible adventure, Let us know! We would love to hear about it.