How one disabled hiker is clearing a path for others: 'I didn't see people who look like me'
Syren Nagakyrie has always loved nature, but hasn't always been able to enjoy the outdoors.
"I just felt like hiking wasn't something I could do because I didn't see people who look like me," they said. Nagakyrie, who is nonbinary and uses the pronouns they and them, has Ehlers-Danlos syndrome, Postural orthostatic tachycardia syndrome and several other medical conditions that make hiking tricky.
"I deal with a lot of chronic pain, a lot of joint issues, a lot of chronic fatigue and some other internal issues," they said.
While paved paths and boardwalks can help make spaces wheelchair accessible, there are all sorts of other challenges for people of varying abilities. Nagakyrie founded the online resource Disabled Hikers to help make the great outdoors easier to reach. Their first book, The Disabled Hiker's Guide to Western Washington and Oregon, offers detailed descriptions of dozens of trails and what it really takes to navigate them.
Nagakyrie spoke to USA TODAY about ongoing challenges with accessibility ahead of the book's release. Questions and answers have been edited for length and clarity.
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Question: What led you to helping others access the outdoors?
Answer: I started Disabled Hikers in March of 2018, but of course, it's built on a lifetime of feeling excluded and left out of the outdoors.
In 2018, I was out hiking in the Olympic National Forest. I had just moved up here, and it's all old-growth trees and incredible scenery, so I was really excited to be out and exploring it. I started out on this one trail, and there (were) just all these obstacles and barriers that weren't listed in any of the guides that I read. I did tons of research beforehand, and none of it was mentioned anywhere.
I started out on this trail and there (were) like steep stairs and slippery rocks and steep drop-offs and really steep grades and things like that that I didn't know about, so it really put me in kind of a dangerous and exhausting position.
I finally got to where I wanted to go, this bridge over this beautiful waterfall, and I'm standing there exhausted and frustrated, but also looking at this waterfall and just feeling really inspired. And at that moment, I said, 'enough. I'm going to do something about this.'
I went home and put up a blog and started writing trail guides with the kind of information that I realized that I needed, hoping it would be helpful to people. And it really kind of took off from there.
Q: A lot of times, disabilities are invisible, right? So people may see you or someone else out on a trail and not realize there may be challenges they're experiencing.
A: Absolutely. With the way that I experience my disabilities and chronic illnesses, I will only be out on a good day, so you know if I'm out and about and if people are seeing me, I'm feeling relatively OK.
When I'm not having a good day, I'm at home, so I will literally be invisible because I don't feel good enough to be out.
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Q: What have you heard from park officials and people who can impact change?
A: It's been good. I think people are really interested and want to make things better. Maybe they just don't know how or they don't think they have the resources or they're prioritizing things that maybe aren't as helpful to the community because they haven't actually talked to the community yet.
Being able to talk with people and explain the kinds of things that are actually helpful for folks with disabilities, the kinds of information that I need, and things like that, has been really impactful. I've worked with Olympic National Park and the Redwood parks and various agencies and parks, national forests, things like that to create some change. That's been meaningful.
Q: What are some things that are are helpful and maybe not huge investments as people may imagine?
A: One is good information. A lot of parks just put up some basic information about a trail or have a checkbox that just says "accessible feature," but that doesn't tell me anything.
That can be a really easy thing, just to provide really good information about your sites and your trails so that people know what to expect and can plan accordingly. It's really about having the information so I can make my own informed decision and not rely on other people to tell me whether or not I can do a thing. I know whether I can do it if I have the information.
Q: What's the kind of information you provide in your guide?
A: I provide stats of the trail, things like length and (steepness) and surface and cross slope and things like that. But then it's a really detailed step-by-step or roll-by-roll description of the trail from start to finish.
What am I going to encounter when I get there?
What is the parking area like?
How many parking spots are there? Are they accessible?
Are there restrooms and benches and tables and things like that?
Step-by-step along the trail, what will I encounter as I go so that I can plan accordingly?
How to get there?
Am I going to be traveling on a rugged forest road or is it a two-lane paved highway, so I know am I going to be able to get my accessible van there?
Am I going to have access to public transportation?
Things like that.
The trails in the guide are rated according to a spoon rating system, based on Christine Miserandino's Spoon Theory, which is kind of a symbol for the energy rationing that disabled and chronically ill folks have to do every day. Maybe I start the day with 10 spoons and every activity is going to take a certain number of spoons. By the end of the day, I may or may not have any left. I may or may not be at a deficit.
Considering that and how much effort each trail will take, while also considering how restorative the experience may be, the rating is kind of a combination of what you might consider a difficulty rating, although not really, but also an accessibility rating and a quality rating. I've tried to be really objective, but also combine those three things so people can have a frame of reference that's more meaningful for folks with disabilities.
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Q: How many trails are there and what kinds of spaces are they in?
A: There are 46 numbered hikes in the book, but there's really much more rolled in there with additional options and viewpoints and things like that. So it includes scenic drives for those days when you're like low energy and don't want to get out of the car but still want to be out in nature. You can take a nice drive, and I've listed accessible viewpoints and stops along the way.
And then there are wheelchair-accessible trails that would be accessible for folks who use a typical manual wheelchair. You know they're like paved, flat, pretty easy access. And then there are wheelchair-hike-able trails for folks who are maybe more experienced wheelchair hikers or have adaptive equipment. They're a little more rugged but would still be accessible for folks with those skills and equipment. And then there (are) foot trails that are suitable for a variety of disabilities. And those again meet the different difficulty criteria and things like that.
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Q: What are you hoping folks experience when they when they read your book?
A: First and foremost, I want disabled folks to see this book and just say, 'Wow, this is something I could do. This is an activity that may be accessible to me' and to really feel that sense of like representation and seeing themselves in that outdoor space. That's something that is really lacking.
Then for nondisabled folks and other guidebook authors and things like that, to just see this and see some examples of how to provide good information for a wide variety of people.
Q: What message would you give to fellow hikers?
A: Just recognize that everyone has their own way of experiencing the outdoors, and no way is better than any other. There is no like peak experience. Whatever your experience is it's valid and not to judge people for that.
Q: What would you want to tell park planners?
A: Reach out to disabled folks in the community, but when you're doing that, recognize that many of us are working with limited resources, limited time and limited energy. Be mindful of that, and provide compensation if possible. Provide a way for folks to really feel like their time and knowledge is valuable and that they're not just going to give their perspective and then get dismissed.
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This article originally appeared on USA TODAY: New book aims to make hiking more accessible for all bodies
