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Disabled Hikers
Syren Nagakyrie is the nature lover behind Disabled Hikers, a website that publishes free online trail guides tailored for the disabled community. (Photo: Courtesy Disabled Hikers)

A New 国产吃瓜黑料 Guide for People with Disabilities

The founder of the organization Disabled Hikers is making the outdoor industry more accessible one trail guide at a time

Published: 
Disabled Hikers
(Photo: Courtesy Disabled Hikers)

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It鈥檚 standard practice when writing about people with disabilities to use person-first language: 鈥渁 person with a disability鈥 is preferable to 鈥渁 disabled person.鈥 Proponents argue that it prioritizes the subject鈥檚 humanity over their condition.聽

disagrees.

鈥淚t inherently implies that being a person means being able-bodied, or we wouldn鈥檛 need the additional descriptor,鈥 Nagakyrie explains. 鈥淧eople don鈥檛 use the term 鈥榩erson with abilities鈥 to describe able-bodied people.鈥 The 37-year-old disability advocate, who uses the pronouns they or them, refers to themself as a disabled person.聽

Nagakyrie is the nature lover behind , a website that publishes free online trail guides tailored for the disabled community. A freelance writer and community organizer of 15 years, Nagakyrie has long, loosely curled brown hair and a gentle demeanor. As a child, they were diagnosed with Ehlers-Danlos syndrome, a relatively rare connective-tissue disorder that causes frequent joint dislocations and chronic pain. They鈥檝e dislocated almost every major joint in their body鈥攎any聽more than once. Nagakyrie also has postural orthostatic tachycardia syndrome, a condition that causes dizziness and fatigue when standing up from a reclining position, among other symptoms. Combined, these things make attempting the average trail feel like 鈥渙ne long trip of pain and frustration, second-guessing myself and my abilities,鈥 they say.聽

Nagakyrie has found solace in nature since they were a child, observing flora and fauna in their family鈥檚 yard, but it wasn鈥檛 until their teens or early twenties that they really started exploring what their body could and couldn鈥檛 do in the outdoors. But there was a lack of infrastructure for the disabled community. 鈥淏eing on a trail meant for able-bodied people reminds me that my experience is of less importance,鈥 says Nagakyrie.

There are lots of straightforward worries鈥擧ow exposed is the trail? What鈥檚 the grade? Are there any crossings? How slick are they? Is there cell service in case of an accident? And then there are the complex emotions that come with the territory. 鈥淪ometimes I鈥檓 afraid of getting stuck: reaching a place in the trail where I won鈥檛 be able to continue forward聽but turning around would be equally difficult,鈥 says Nagakyrie, who experiences anxiety and depression as well. 鈥淚 often berate myself, wondering why I can鈥檛 do this when people are passing by me with no problem.鈥

Nagakyrie, who is mostly able to walk unaided but sometimes uses a sleek green cane (or more rarely a wheelchair), has long been vexed by the lack of nuanced information available about trails. Physically and mentally disabled people, as well as those with chronic illnesses鈥攑eople who arguably need nature even more than the able-bodied community鈥攁re precluded from outdoor recreation because they don鈥檛 know what to expect. Hours of research before hitting the trail still often doesn鈥檛 solve the problem. 鈥淪hort of a trail saying it鈥檚 ADA accessible and paved, that鈥檚 the only accessibility information that鈥檚 out there for trails,鈥 says Nagakyrie. 鈥淎,听it鈥檚 not always true. B,听it鈥檚 not always accurate or helpful for people.鈥澛

Disabled Hikers
Syren Nagakyrie (Courtesy Disabled Hikers)

Even so-called accessible聽trails present physical challenges that the able-bodied might never consider, such as bumpy boardwalks, inaccessible parking areas, and visual barriers at sitting height (let alone the dearth of signage and interpretive programs for people with visual, aural, and other impairments). Things that are ostensibly trivial to the able-bodied, such as the size of gravel bits, can be a determining factor for聽a trail鈥檚聽accessibility with a wheelchair or rolling walker鈥攂ut good luck finding that information ahead of time.

In Nagakyrie鈥檚 opinion, few parks excel at being truly accessible for the 鈥攖hat鈥檚 more than one in ten鈥攚ho have disabilities. 鈥淢ost parks and organizations that I speak with are open to hearing about changes that need to be made and are working on possible solutions, but change is very slow,鈥 Nagakyrie says. Compared with the costs of constructing new facilities, merely providing detailed information about existing trails, campgrounds, park buildings, and other recreation sites would be a relatively quick way to start getting more disabled people outside. But even that鈥檚 rare.

In early 2018, Nagakyrie鈥檚 frustrations came to a head. A supposedly easy trail on the Olympic Peninsula, near their home in Forks, Washington, started out with steep stairs and a narrow path along a scree-filled drop-off edge, then branched off with no markers. Nagakyrie and their dog, Ranger, an elderly beagle鈥揓ack Russell mix, eventually made it to a waterfall. Exhausted, Nagakyrie leaned on a bridge railing, observing the early-spring flow. 鈥淚t was a light-filled moment where I said, 鈥榃hy don鈥檛 I do something about this?鈥欌

Disabled Hikers was born shortly thereafter with three goals: organizing group hikes, celebrating disabled people鈥檚 experiences in the wild, and facilitating those experiences by making specific information readily available. The organization聽makes聽detailed , of which there are currently 11聽written by Nagakyrie about destinations in the Pacific Northwest. The guides are intended for disabled people, but can also be useful for聽a range of聽people, like friends and family of disabled people, parents of young children, elderly people, and those with temporary injuries (although Nagakyrie notes that the experience of being injured temporarily is very different from that of the permanently disabled).聽

Nagakyrie also thinks broadly聽about trail use when putting together guides. 鈥淚 define a hike聽as anything that you鈥檙e doing outside鈥攁ny form of movement鈥攚hether that鈥檚 moving in a chair, or walking, or biking,鈥 they say. To approximate the difficulty of hikes, Nagakyrie uses the聽, a rating system that accounts for the limited energy reserves that disabled people have to ration. The guides weigh potential hurdles versus the regenerative potential of an outing; a beautiful vista, for example, could be worth the exertion, even if it means you have to spend the next day or two recuperating in bed. 鈥淚 can鈥檛 decide for someone how difficult the trail will be for them,鈥 Nagakyrie says. 鈥淥nly they can do that. That鈥檚 why I try to provide as much information as I do.鈥

At present, Nagakyrie is the sole person working on the back end of the site. They from those in the disabled community as well as behind-the-scenes help from people聽who aren鈥檛 disabled. The website鈥檚 blog component, Tales from the Trails, is the foundation for a more sophisticated community forum that Nagakyrie would like to build out. It currently features post, about an accessible cabin in Wisconsin鈥檚 Blue Mound State Park, written by a couple from the state.聽

Although the website is somewhat limited鈥擭agakyrie maintains the site for free, but we鈥檒l get to that later鈥擭agakyrie has plans for more diverse offerings. They hope to expand the trail-guide library to a national scale and create PDF guides to distribute to other organizations. They鈥檙e chipping away at a proposal for a guidebook, as well as curating all the online research that鈥檚 already available from other websites into a sort of e-book, to make researching trails easier. On the ground, they give presentations and work with local groups, like the Washington Trails Association, and Olympic National Park to enact change. This summer, for example, Nagakryie convinced the National Park Service to widen聽the pedestrian entrance to聽Olympic Hot Springs Road, which will allow people who use wheeled mobility devices to access the area. Nagakyrie is also developing an ambassador program, which would train chronically ill and disabled folks from throughout the U.S. to lead hikes, write guides, and do advocacy work in their own communities.聽

Nonprofits like , which creates partnership opportunities to help disabled people get outside, and聽adaptive groups, such as 听补苍诲听,听already exist around the country, but they鈥檙e predicated on able-bodied people assisting the disabled. Disabled Hikers is鈥攊n addition to being a disabled-led organization鈥攁 resource that helps disabled people get outside independently.

On the Olympic Peninsula, Nagakyrie coordinates group outings and leads private hikes on a donation basis, a service that鈥檚 less rare but equally valuable. (If outings are farther afield, they request compensation to cover expenses.) 鈥淭his is really important,鈥 says Sadaf Hussain, a 48-year-old retired physician from Seattle who has done one guided and one group hike聽with Nagakyrie so far. 鈥淒isabled people often cannot work, or only work part-time, and have limited resources to be able to hire an experienced guide that can provide you with the confidence and support needed to be on the trails.鈥澛

Hussain says she was ecstatic to discover Disabled Hikers. Multiple autoimmune diseases, including neuro-sarcoidosis and autonomic dysfunction, have left her unable to venture out alone, even though she considers nature part of her treatment plan. 鈥淚 often feel guilty when I hike with my healthier, active friends, as they would need to stop frequently for me. So I stopped asking them to join me on hikes,鈥 Hussain says. 鈥淪yren has eliminated any reservations or guilt I may experience in slowing others down, because the group hikes as fast as the slowest hiker. When one person rests, we all rest.鈥

鈥淭he only disability in life is a society that is inherently ableist in an inaccessible world.鈥

Nagakyrie goes out of their way to be inclusive, noting Native land names and adding descriptive captions to help screen readers pick up on informative text; one reads, 鈥淭he rectangular photo captures the scene at an angle. Aqua blue water flows between a moss covered rock wall on one side and rounded rocks on the other. There is a small waterfall in the background.鈥 It鈥檚 an intersectional approach informed in part by their own identity: a queer, disabled person from a working-class background. This acknowledgement of diversity has proven beneficial not just in their work but in their personal life, too. 鈥淣oticing the diversity in nature鈥攁nd the ways in which all beings have a place鈥攈as been healing for me,鈥 they say.

Nagakyrie is still recovering from a series of traumatic events that unfolded a few years ago. In the spring of 2016, their younger sister, the middle child of three, died suddenly from disability-related causes, an experience Nagakyrie describes as 鈥渁bsolutely devastating.鈥 Six months later, a knee injury left them unable to walk for a time. The circumstances enabled Nagakyrie鈥檚 increasingly abusive husband to become physical. Nagakyrie knew they needed to get out. After a drawn-out separation process, the two eventually divorced in 2017, a few years into their marriage. Left without a stable place to live, Nagakyrie bounced around before landing in Forks that autumn.聽

Through all of it, Nagakyrie says that nature felt like a place to come home. At one point, they lived near the waterfalls of the Columbia River Gorge, on the Washington-Oregon border. 鈥淚 would just kind of sit, and relax, and breathe,鈥 they say. Around the same time, Nagakyrie started a Patreon page to help crowdfund their community work, which also includes volunteering with their local land trust, organizing grief circles, and other projects. Their disabilities prevent them from full-time work, and it can be tough to get by living聽alone in a rural area. 鈥淚t was the first time I had really asked for financial support from my work, and since then, it鈥檚 been鈥︹ They give a big sigh. 鈥淚t鈥檚 been challenging.鈥

Nagakyrie says people push back on social media about accessibility work: 鈥淵ou want us to pave over the wilderness just so a few people who use wheelchairs can see it?鈥 Strangers quibble about how a disabled person can lead hikes, to which Nagakyrie explains, 鈥淛ust because I could hike a moderate trail one day doesn鈥檛 mean I鈥檓 not disabled, and it doesn鈥檛 mean I鈥檒l be able to do it again tomorrow.鈥 Some people ask how Nagakyrie can spend so much time on Disabled Hikers. 鈥淭he truth is, it comes at a huge cost,鈥 Nagakyrie wrote in one . 鈥淏ut that doesn鈥檛 mean the work isn鈥檛 important.鈥

Nagakyrie has a love-hate relationship with social media that extends beyond the trolls. While Nagakyrie recognizes the value of using and as community-organizing tools, much of their frustration with the outdoor community stems from these platforms. They find that social media tends to perpetuate ableism鈥攅ven, somehow, when the subject of a post is disabled. Nagakyrie is tired of hearing about 鈥渉ow inspired [able-bodied people] are to 鈥榣ive their best life鈥 and stop making excuses for themselves about climbing the next 14,000foot peak,鈥 they say. 鈥淭hat is an experience that is entirely inaccessible to a great many disabled people, and using our everyday lives as inspiration to do the epitome of able-bodied privilege is very frustrating.鈥

Nagakyrie rails against what they refer to as 鈥渋nspiration porn,鈥 those viral, feel-good videos that do little to advance the ball.聽

鈥淚 hear a lot of 鈥榯he only disability in life is a bad attitude,鈥 and that is just not true,鈥 they say. 鈥淭he only disability in life is a society that is inherently ableist in an inaccessible world.鈥

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