World

‘I Wanted That Self-Reliance Back’

Beneath the wooden boardwalk where Syren Nagakyrie, 40, was on a hike through Lettuce Lake Conservation Park in Tampa, Fla., dark shadows of fish moved in the vegetation-clogged waters, while red-eyed herons strode between the cypress roots that stuck out from the water like knobby, twisted knees.

Mx. Nagakyrie, who is nonbinary, pointed out a turtle sunning itself on a log. . But to see the wildlife, Mx. Nagakyrie’s mother, Vickie Boyer, 59, had to lean out of her wheelchair and peer through cracks between the wooden railings. The short wooden boardwalk loop, near Ms. Boyer’s home in Riverview, Fla., was supposedly on an accessible trail. Mx. Nagakyrie jotted down the railing’s height measurements in a notebook. It was 42 inches, six inches higher than what someone using a wheelchair could comfortably see over.

While some organizations offer to have non-disabled people carry, push or otherwise help people with disabilities navigate the outdoors, Mx. Nagakryie, who has conditions that cause chronic pain and fatigue, reflects a growing movement of disabled people pushing for more independent access to the great outdoors, taking steps themselves by publishing trail guides, establishing nonprofits to empower others through equipment, advocacy and training, and testifying before Congress.

Trevor Thomas convinced a seeing-eye dog school to let him have two dogs that he could train for the backcountry.Credit…Trevor Thomas

Growing interest in outdoor recreation

As a result of the pandemic, more people nationwide have turned to outdoor recreation. A March 2021 report commissioned by the Outdoor Industry Association found that 53 percent of Americans over the age of six participated in outdoor recreation in 2020 — the highest rate on record. Many destinations managed by the National Park Service also welcomed record numbers of visitors in 2020.

As visitation increases, so do the number of visitors with disabilities, said Jeremy Buzzell, an accessibility program manager with the National Park Service.

Last April, several disability activists testified at a hearing on Capitol Hill, in front of members of the House Natural Resources Committee, which oversees the Park Service, to push for greater accessibility in outdoor spaces and call attention to barriers in public parks.

Mr. Buzzell said that parks across the country are receiving increased requests for more accessibility information, and the demand prompted the agency to form an Accessibility Task Force and launch a five-year strategy in 2015 to improve accessibility.

More national parks are partnering with local disability organizations to get accessibility, Mr. Buzzell said, and the agency is assessing trails to see if there are improvements that could be made — such as increasing the width of a trail or removing obstructions or steps — that could increase access.

“Very often, even if a trail is not able to meet the letter of the law as an accessible trail, we can still change things to make it more accessible,” Mr. Buzzell said.

Ambika Rajyagor, right, loves hiking with her sister, Devika. The pair have traveled to the Yosemite, Grand Canyon and Joshua Tree National Parks.Credit…Ambika Rajyagor

Hikers want more information

Some outdoors enthusiasts have begun to write their own trail guides for national, local and state parks, such as Mx. Nagakyrie. They founded a project called Disabled Hikers to empower others and share detailed trail guides they write. A native of Washington state, they have already completed close to 200 trail guides, most of which are clustered in the Pacific Northwest.

Mx. Nagakyrie was inspired to start this project after struggling to determine which trails they could hike — sometimes trails that were labeled easy presented challenges like stairs or rocky, uneven surfaces that a non-disabled person might not think twice about.

“I’m not out here to tell any individual ‘yes or no, you can or can’t do this trail’,” said Mx. Nagakyrie, who on the hike in Florida recorded details about the width of the boardwalk, the height of the bump between the boardwalk ramp and the ground, the steepness of the ramps and the type of surfaces on the path to the boardwalk. “I just want to provide information so they can make that decision themselves.”

Rather than only sticking to paved trails, they argue that any trail can be more accessible if disabled hikers are equipped with the right information — and even trails labeled “accessible” can present challenges that park staff don’t always recognize.

Some trail guides are already available for free on the Disabled Hikers website, but Mx. Nagakyrie also plans to publish a guidebook, which is currently available for pre-order. Each trail is given a rating of how many “spoons” it takes to complete, in reference to a popular term used by those with chronic fatigue to describe how much energy they have to complete a given task. The more spoons a task requires, the harder and more energy-consuming it is.

The trail descriptions also include in-depth descriptions that start fromthe parking lot. Details Mx. Nagakyrie provides include trail width, steepness, surface material, landmarks, obstacles like roots or boulders, places to rest, accessible bathrooms, cellphone reception and water sources.

Mx. Nagakryie reflects a growing movement of disabled people pushing for more independent access to the great outdoors.Credit…Todd Anderson for The New York Times

Collaborations to improve access

This is the type of information Georgena Moran would like more available on websites for national, state and local parks. Since being diagnosed with multiple sclerosis two decades ago, Ms. Moran, 64, has held on to her identity as an avid outdoor enthusiast. A former canoe racer and scuba diver, she uses her chin to drive her power wheelchair on hikes near her home in Portland, Ore. She particularly loves to get off paved trails.

“My adventurous spirit never died because my disability increased,” she said. “I still want to go out and challenge myself as much as possible.”

While she usually brings an abled-bodied companion the first time she tries a new hike, she said that going on hikes independently is equally important for her to connect with her spiritual self.

“It’s a way of re-rooting,” she said.

But simple obstacles can prevent her from even getting onto a trail — sometimes there is no available handicapped parking, or curb cuts for her to get out of the parking lot. At the trail head, she’s found concrete barriers designed to keep out cars and ATVs but that also block her from entering.

Experiences like these pushed Ms. Moran to start Access Recreation, an organization that created guidelines for the type of information parks should provide disabled hikers. The group wrote sample trail guides for around three dozen trails in Oregon with the intention of getting larger organizations involved.

Access Recreation is now working with the U.S. Fish and Wildlife Service to improve accessibility at the Ridgefield National Wildlife Refuge outside of Ridgefield, Wash., with the aim that it will serve as an example for other parks. Juliette Fernandez, a project manager with the Wildlife Service, said the agency is collecting and publishing better information about the trail, as well as installing new signs at the park that blind people can read through touch.

“We can really move mountains with very subtle touches,” she said.

David Nickelson is partially paralyzed from the waist down and uses an off-road handcycle to tackle all sorts of terrain.Credit…NPS/Jacob W. Frank

Demand for affordable outdoor equipment

Sometimes, more regular trail maintenance could make a huge difference. David Nickelson, 42, of Winter Garden, Fla., is partially paralyzed from the waist down and uses an off-road handcycle to tackle all sorts of terrain. But he cannot get around fallen logs.

“You could have a trail where 99 percent of it could be passable or doable,” he said. But “if there’s one ledge or one tree down, or one narrow part of the trail at the beginning, then none of it is accessible.”

His off-road handcycle cost him over $7,000, an out-of-pocket price he paid for his independence outdoors.

“So often with a disability you’re reliant on others to help you do things you used to do on your own,” he said. “One of the things I love about nature and hiking and trail running and stuff is being out there just with my own thoughts.”

But the type of equipment he uses wasn’t always available.

When Eric Baker, 63, of Morado, Calif., started experiencing symptoms of his chronic debilitating joint diseases 40 years ago, he could not find any wheelchairs on the market that could handle rugged outdoor terrain.

“One of the biggest problems in the disability community is most everything is made for indoor use,” he said.

Any mobility equipment made for the outdoors is expensive, Mr. Baker said, and often not covered by insurance because it isn’t deemed medically necessary. The type of standard wheelchairs that insurance does typically cover cannot go through rocks, soft surfaces or uneven surfaces.

Over time, Mr. Baker said he has noticed more and more options for outdoor wheelchairs, but he still couldn’t find one he could afford. Track chairs, which use motor-powered tracks instead of wheels to tackle uneven, rocky or soft surfaces, typically cost over $10,000.

Now he uses the GRIT Freedom chair, a three-wheeled chair that can be propelled using levers, invented by M.I.T. researchers about a decade ago. With the new chair, Mr. Baker hops curbs, hunts, visits the beach and can cross mud, rocks and gravel. The chair cost him about $3,500.

Its popularity has lead to several Facebook groups, where members organize group hikes, share favorite hiking locations, exchange tips on how to modify the chair for different activities and ask about fund-raising to purchase a chair.

“I’m not out here to tell any individual ‘yes or no, you can or can’t do this trail’,” said Mx. Nagakyrie. “I just want to provide information so they can make that decision themselves.”Credit…Todd Anderson for The New York Times

Aside from the GRIT Freedom Chair, there have been increasing options for affordable outdoor equipment over the past decade, according to Dustin Berg, the founder and executive director of Global Opportunities Unlimited, a nonprofit that works to make the outdoors more accessible.

Mr. Berg, 37, a paraplegic, founded the Albequerque-based organization in 2005 after meeting other people with spinal cord injuries who also wanted to get back outside independently.

“I wouldn’t want a bunch of able-bodied folks to carry me up to the top of a mountain,” Mr. Berg said. “I don’t see a whole lot of freedom in that.”

His company provides off-road handcycles, wheelchairs and utility vehicles that people can reserve and use for free for excursions in New Mexico.

It’s about training too

Sometimes, it’s not just about equipment — it’s also about training. Seeing-eye dogs for the blind are often only trained to work in urban landscapes, and instructors for the blind may only teach people how to use their canes on the pavement.

“They simply wanted you to use your cane and expected you to stay on the sidewalk,” said Trevor Thomas, 52, of Charlotte, N.C.

As a blind outdoor enthusiast, he trained himself to make detailed maps, trace sign letters with his fingers and use trekking poles to hike the Appalachian Trail alone. For every mile of hiking, he estimates he did about four hours of research and notetaking.

But, as he tried harder hikes, he realized he still needed other people to help him through dangerous or tricky sections. That’s when he decided to get a guide dog — and convinced a seeing-eye dog school, Guide Dogs for the Blind in San Rafael, Calif., to let him have two dogs that he could train for the backcountry.

“I wanted that self-reliance back, I wanted the safety nets removed,” he explained.

While Mr. Thomas believes the backcountry isn’t suitable for everyone, he thinks the outdoors should be. In 2013, he started the Team FarSight Foundation to help empower other visually impaired individuals to hike, climb and get outdoors.

Even short hikes can be meaningful

Ambika Rajyagor, 26, of Chino Hills, Calif., loves hiking with her sister, Devika, 23. The pair have traveled to the Yosemite, Grand Canyon and Joshua Tree National Parks, but sometimes struggle to find accessible trails.

Devika has cerebral palsy, experiences seizures and does not speak. She was able to walk until about five years ago, but now she is only able to control her facial muscles. She cannot control a motorized wheelchair and her family is unable to buy a wheelchair for different terrains.

If the sisters want to go on a hike, Ambika must push Devika, which is challenging because Ambika too has a disability, an autoimmune condition that affects her joints and energy levels.

On a recent hike in Carbon Canyon Regional Park in California, Ambika and Devika were testing out a new bright purple wheelchair, with thin rubber wheels that offered some traction. Even with better tires, the pair struggled to make it out of the parking lot, covered with chunky rock gravel, before reaching the hard-packed dirt trail.

“We’re not going to let the trail stop us,” said Ambika.

After encountering unexpected inclines on a short loop labeled “easy” by online reviews, Ambika had to rest. She took off her sister’s headphones, which had been blasting Devika’s favorite music from Taylor Swift, so that they could both enjoy listening to birds flitting around in a small redwood grove. Devika gave her a smile as they rested.

To Ambika, this moment of joy symbolizes the perspective that disabled hikers can bring to outdoor culture. While many outdoor enthusiasts have a mind-set of conquering the outdoors by doing increasingly challenging hikes on ever higher peaks, some disabled hikers often take time to just appreciate the outdoors.

“Just being outside and existing outside is something to be proud of,” she said.

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