Disability and the Outdoors by rhobart

DISABILITY AND THE OUTDOORS. A MAGAZINE BY REBECCA HOBART. MADE FOR ‘ARCHAEOLOGY OF TRAILS’ FALL 2021. UNIVERSITY OF NEW MEXICO.

Table of Contents

I. II. III. IV. V. VI. VII. VIII. IX. X. XI. XII.

INTRO TABLE OF CONTENTS BACKGROUND (CLASS) BACKGROUND (ME) MY FIRST TIME CAMPING ACADEMIC SECTION BARRIERS DUSTIN BERG FEATURE ZOE PRINGLE FEATURE ISABEL FRALEY FEATURE SARAH SHAFFER FEATURE MY FIRST TIME WINTER CAMPING

ARCHAEOLOGY OF TRAILS I’ve had the utmost privilege of being a student of the Honors College at the University of New Mexico for the past few years. This opportunity to participate in interdisciplinary, thought-provoking conversations on a wide array of topics (musical theatre, the Civil War, murder, Latinx cinema and now – the outdoors) has been uniquely mine and I’d loved it all. This magazine is created for my current honors course: UHON401: The Archaeology of Trails, but welcomes perusal and thought from all.

Photo from Fall 2021 El Morro Field Trip L to R: Annette, Evelyn, Zoe

MY BACKGROUND I didn’t grow up hiking, camping, biking, backpacking, etc. My family wasn’t all that outdoorsy and it was scary. My parents had health issues that really kept them from getting outside, especially for overnight periods. I never felt connected to some of my peers and community growing up who had so much confidence and experience outdoors. I was in Girl Scouts as a young girl, which involved some shorter-duration, outlined-schedule camping experiences. I recall enjoying them, nonetheless. Early in middle school, I became best friends with the French horn player in band, Kaitlyn, who had such a profound impact on my life as she inspired confidence in me and my ability to exist outdoors. The Summer after 9th grade, herI family invited me on their week-long family camping trip to the monumental sand dunes in Eastern Oregon and I loved it. That was the first time I’d ever stayed in a tent…and would be the only time until my third year year of college. It’s not that I never had outdoor experiences, there was just a lot of fear from my parents about the go-into-the-woods-without-cell-service types of outdoor experiences, so I often refrained. I’ve had hearing aids since I was 8 – so, about 13 years now – and that’s always been a point of concern for me. I didn’t think I had a place in the outdoors because I felt that anything that could potentially compromise my hearing aids would be the end of my world. There’s a sense of security being near civilization because civilization, oftentimes, equates to resources. In the event that my hearing aid battery died and I was ill-prepared, I could easily get to the orange, size 13 batteries. If my wax guards gave out or my hearing aids were too plugged with wax to work at all, I could schedule an emergency appointment with my audiologist. It’s not just a fear of not being able to problem-solve. My hearing aids are my lifeline to being able to have conversations with people. I have a working proficiency in sign language, but I’m not fluent right now and no one around me uses it. Losing access to my hearing aids would effectively stifle me from participating in my own life. That said, I’m working with this fear. I have a swanky dehumidifier for my hearing aids that I use at night in super moist conditions that helps dry them out. I (usually) keep extra batteries on me (nowadays I’m the yellow, size 10). I’m leaning into what scares me in hopes that I can continue to experience more of this life. -Rebecca

My first time camping! Summer 2015, Oregon Dunes

I never thought I’d be including camping photos from seven years ago in a project about disability and the outdoors, but here we are. Once I started to accept and embrace my disability, things got a lot better for me.

DISABILITY AND THE OUTDOORS Though my outdoor experiences are far and few between, I’ve long had a fascination with thruhiking, which is a term coined to describe an endto-end hike of a long trail. This brought me to my dream of hiking the Pacific Crest Trail and then again to this honors course. I

The general anxiety that many seem to experience being alone outdoors is amplified by my hearing loss. It has been tough for me to be comfortable camping or backpacking, especially doing so alone, because I recognize the vulnerability that comes with my disability. I try to think back on the principles adjacent to Labyrinths and get out of my head, but It’s touch-and-go.

about being outdoors is how easy it is to be mindful. We explored this in our first reading of the semester ‘Walking the Labyrinth.’ I really connected with the idea that walking could be meditative and foster meaningful thoughts within and beyond ones self.

forms, but the common threads are the differences in accessibility, representation, resources

have, time and time again, found that my favorite part

Disability takes so many

“Movement removes the excess charge of psychic energy that hinders efforts to quite one’s thought processes.”

and community. There’s adversity in being disabled because the outdoors weren’t shaped for

In the Jon Anderson’s

someone that’s not able-

‘Talking whilst walking: a

bodied. There’s a collective

geographical archeology of

responsibility to strengthen

knowledge’ reading, he

the outdoors to include

illustrates the idea of co-

everyone – because people

ingredience of people and

and place includes

place. This reading allowed

everyone. Through this

me to think more broadly

project, I interviewed and

about how different pieces

wrote features on 4 disabled

fit together and how

outdoor-goers from across

disabled people fit in the

the country.

outdoors.

BARRIERS

Representation

Accessibility

Resources

I follow a gazillion hiking

To have resources, such as

What is the responsibility of

accounts on social media,

adaptive climbing or local

big, outdoor companies to

but I can count on one hand

nonprofits whose work is to

be more inclusive in the

how many of those are

make the outdoors more

products they offer? How do

specifically oriented toward

inclusive, simply exist is

disabled people who want

highlighting or serving hikers

important. However,

to get involved outdoors

with disabilities. Without

education and awareness

acquire appropriate gear?

representation of disabled

are also critical to consider.

Will people at their local

people, with all kinds of

If a person with a disability

outdoor shop know how to

difference, doing all kinds of

doesn’t know that there are

accommodate them? Gear

activities, these spaces are

adaptive activities that exist,

is hard enough to make

seriously lacking. I want to be

where to find them, how to

decisions about for able-

able to see people with a

get involved – then the work

bodied people; this barrier

bilateral hearing loss, like

isn’t done to make these

matters.

myself, talk about their

outdoor spaces accessible

experiences thru-hiking.

for all. 7

Dustin Berg Born in New Mexico and raised in the outdoors, Dustin Berg is a shining example of overcoming adversity to get back to what you love. In 2003, at the age of 19, he was in a motorcycle accident, which resulted in a T7 spinal cord injury. Just two years later, he created nonprofit GO Unlimited, which helps people in wheelchairs participate in the outdoors through adaptive opportunities. “That changed everything about my mobility,” he said. “It was a long process to get back to being independent.” He said it was important to use his strengths to spur action and make a difference that would really have a positive impact on people around him.

Courtesy Photo.

“One of the huge driving factors (in creating GO Unlimited), and what I was going to do with my life, is that I wanted to do something meaningful. I didn’t want to be a person that people just took care of, I didn’t want to be a drag on my family, especially. I didn’t want to do something that was just monotonous,” he said. He said nothing of the sorts existed in Albuquerque and that his work was “born out of necessity.” 8 Courtesy Photo.

“The outdoors for me and my family hasn’t really been a luxury, it’s been more of a necessity. It’s what we do … so getting back that part of my life was critical, really.” Dustin said he’s been able to get back to doing many of the outdoor adventures through adapting equipment to meet his needs, and looks to help others do the same. His work enables people with disabilities to participate in fly fishing, boating, mountain biking and the list goes on. “We got an accessible drip boat so you can float down the rivers in its entirety and not be limited by where you can get a wheelchair to the bank,” he said. I

Courtesy Photo.

Dustin said his favorite activity right now is mountain biking and that it’s a “phenomenal increase in opportunity.” Adaptive measures have allowed Dustin to independently adventure outdoors for some activities, notably mountain biking, but logistical and safety concerns are definitely still present. “I’ll travel to the Valles Caldera in the Jemez - I could probably get away doing it by myself but at the same time, it’s kind of like a situation where you want to have a little bit of a backup in case something were to happen. Like, a bike breaks down and you’re out there and you can’t just walk back,” he said. 9

Pre-COVID-19 pandemic, Dustin said GO Unlimited had a partnership with Lovelace UNM Rehabilitation Hospital to provide peer mentorship and support groups for others experiencing mobility challenges. That said, some activities, such as mountain biking, grew significantly as GO Unlimited adapted to more individualized adventures. “It’s taking off,” Berg said. “That’s been a national trend in the biking industry as everybody’s trying to find things to do outside. For us, that was kind of a natural thing to expand on and make available to people.” Amplifying conversations between disabled individuals, community members and legislators about how to better support adaptive outdoor adventure activities is critical to advance opportunities for people. Dustin said he hopes to see continued efforts between disabled people and those without disabilities to have meaningful conversations about disability. It should be a two-way street of abled people being comfortable asking “Hey what can I help with?” or “Can you explain to me how disability impacts your life?” and people with disabilities speaking up about their needs and how outdoor spaces can be made more accessible, he said. One barrier for users of adaptive mountain bikes is a need for 36” trail openings. Without it, an otherwise perfectly-good trail “prohibits people from even enjoying it.” “When you build more of a community of people working together - people with and without disabilities - it starts to (break down) that stigma between the two groups of people that are afraid to ask ‘Hey what can I help with’ or ‘Can you explain to me how does disability impact your life’ and same to the other other side.”

Zoé Pringle

A public health and sociology student at Brandeis University in Massachusetts, Zoé Pringle has a rare form of Ehlers-Danlos (EDS), which is a connective tissue disorder. She considers herself physically disabled with limited movement, and has lower muscle tone and limited spinal movement from scoliosis surgery. Growing up in Oregon, a place over-flowing with outdoorsy culture, Zoé said her EDS made it hard for her to feel comfortable participating in the outdoors at a younger age. Nowadays, she’s big on adaptive rock-climbing, hiking and backpacking. She said having adaptive outdoor activities is really important to make the outdoors accessible for disabled people. Zoé said adaptive opportunities helped her to feel confident being outdoors with abled people. “I always felt really insecure about having to try hard in front of abled people,” she said. “I couldn’t name that that’s what I was feeling when I was younger, but now … I know I move a little differently.” Though she doesn’t use mobility aids, existing in the outdoors looks different for Zoé. She said she once was really hesitant to try new things outdoors because her needs were different and that not knowing if she should or how to ask for accommodations kept her from participating as a child “The unknown was really freaky to me,” she said. “It was like, ‘What if we get to this point and I can’t do what everyone is about to do’ … and I didn’t really know how to ask for help.” “I was always really hesitant to do things that I knew were going to be difficult for me. Basically, I stuck to hikes that I knew were going to be easy,” Zoé said. Compromised lung capacity from scoliosis, which is then further worsened by her heavy backpacking pack, makes her feel out-of-breath and need to stop more frequently. “I find comfort in being surrounded by people who also know my limits,” she said. 12

Zoe’s first backpacking venture, a 12-mile, 2-day trip in Oregon, was with a close friend and their family. She said going with a close friend who was aware of her needs made her feel more secure trying something new in the outdoors. “Being able to spend that time with my friend and let her see me in this state that I generally don’t let people see me in - which is more vulnerable and in need a helping hand or take breaks every 10-15 minutes instead of every 30 minutes like everyone else is doing, I think that was really powerful.” She said that backpacking trip was overwhelmingly positive and affirming of what she’s capable of as a disabled hiker. The summit views were all the more beautiful because they went hand-in-hand with finishing a challenging hike, Zoé said. “I had to stop a lot, but I did it. I (realized that) I can ask people for help and they can give me a hand if I need, people don’t actually mind if you need to take more breaks than they do. It’s actually okay to say what you need and then you can do these cool things.” Zoé said even though it’s hard to ask for disability accommodations, especially from strangers, she’s getting better about it. Recently, she went alone to an outdoor training for climbing to get more practice setting up the ropes. She said the approach was more difficult than she anticipated and she ended up asking someone for a hand, which allowed her to move forward and complete the training. The training wasn’t designed from an adaptive approach, Zoé said, despite there being multiple adaptive climbers, and that it would’ve been helpful to get information up-front about the approach to plan for how to get to the walls. “I’d rather just ask for help instead of not doing these things at all,” she said. “I used to feel very embarrassed about it.” 13

ISABEL ISABELFRALEY FRALEY

Isabel Fraley is an avid rock-climber, hiker and backpacker; she also identifies as deaf and wears hearing aids. Born with a severe hearing loss, which worsened at the age of two from a rapid change in air pressure on a flight, Fraley currently has a 75-decibel bilateral, sensorineural hearing loss. “Everything is just a little bit harder,” Fraley. “(My hearing loss) is definitely something I take into consideration no matter what I’m doing, but being outdoors is just another element of something you have to worry about.” Growing up in south Florida, Fraley always had an interest in being outdoors but seeing mountains for the first time at 15 is what solidified her passion. Her first time solo backpacking trip was in college, when she did a section of the Appalachian Trail. “That’s when I really solidified my connection to the outdoors and nature and just realized that it was almost like spirituality for me,” she said. “I’ve always just felt more comfortable outside and in nature and have naturally never let anything come between that.” Fraley said there’s a “default” in her mind that she always reverts to when preparing for outdoor trips. She said there are additional preparation steps she has to consider to protect her hearing aids, such as using hearing aid sleeves and hats to protect them from excess moisture. “I love the rain, but also it just makes me extremely anxious because … I know that if these $3,000 things in my ears get a little bit wet, I’m screwed,” Fraley said. Isabel said hearing loss really affects her, especially at nighttime, when she “can’t hear anything” and that it “adds another layer of vulnerability.” She said there are times, especially when she’s in an outdoor leadership role, when she’ll sleep with her hearing aids in throughout the night. Fraley went to college at Appalachian State University in Boone, North Carolina and moved to Colorado to teach at an outdoor education school. She said many of the kids at her school have disabilities and her work is centric to teaching them science and outdoor skills. “At that age - they’re in sixth grade, you’re just so aware of your peers and what everyone’s thinking,” Fraley said. “My number one job is to teach them science, but honestly right next to that is to get them excited about the outdoors. That looks different for 15 everyone.”

Sarah Shaffer

Backpacker Sarah Shaffer has Type-1 diabetes, which she was born with. She grew up in northern California and skiing in the Sierras, backpacking, and hiking. In the outdoors, she has to be vigilant about regulating her blood sugar and has a continuous glucose monitor, which monitors and records her blood sugar. “It can be super dangerous. Outside activities require a lot of energy and when my body uses a lot of energy, my blood sugar will go low which can put you into a diabetic coma,” she said. She said she follows precautionary measures and always prepares for additional needs when she goes into the wilderness. Though the exact needs vary depending on the type and duration of the trip, she always makes sure to have an abundant food supply. “When I’m hiking, I carry a lot of bars on me and … glucose,” she said. “The same with backpacking - I carry probably twice the amount of weight in food when I go backpacking than most people probably would.” 16

She also seasonally goes on week-long kayaking trips, with family and friends. She said without cell service readily available to call for emergency assistance, it’s especially important to have access to a satellite communications device. As an avid backpacker, Shaffer said she makes it a point to go with someone who’s trained in responding to diabetics with low blood-sugar and noted that it’s not exceptionally difficult to teach people how to administer a glucagon shot. “The average person doesn’t really know what (the shot) is, but typically they aren’t scared off by it,” she said. “They get that it’s something they might have to do (and) just want to make sure they know how to do it before something else.” This past summer, Shaffer was hiking a dome in Yosemite National Park with her dad and was ill-prepared for an unplanned night at the summit. She said her hike up had taken longer than expected and she wasn’t able to hike 7 miles down in the dark. “I didn’t really pack for it, so I didn’t really have enough food or glucose for the night, so we really had to just figure that out and basically stay up all night, trying to make sure that my blood-glucose levels were okay,” she said.

Winter Camping

I had the utmost pleasure of joining my friend, who was an adult leader for a local boy scouts troop, on their annual “Klondike” winter camping trip in January 2021. It was a 3-day, 2-night hellscape (kidding. Ish.) on Mt. Taylor just outside of Grants, New Mexico. I’d never been backpacking before, much less winter camping. I dove head first into this weekend with limited experience and borrowed nearly all of my gear from my pro-backpacker friend. Moisture is my worst nightmare with hearing aids – hello, desert living. This was a really positive experience for me and showed me that there are ways to accommodate my disability in the outdoors.

THANK YOU.

ISABEL ISABELFRALEY FRALEY