A Beginner’s Guide to Chronic Illness and Disability in the Outdoors

The Outdoors
Written By Amy Denton-Luke

Written by Amy Denton-Luke

Amy sits on a downed log on a riverbed, with her crutches and backpack sitting beside her.

This blog post was originally a zoom presentation for the National Library of Medicine.

Hi everyone! First, I wanted to say thank you to the National Library of Medicine for inviting me to give this presentation today, and a thank you to everyone who is joining us as well. I hope you're all having a low pain, low symptom day!

My name is Amy Denton-Luke and I'm the creator of Disabled in the Wild, an Instagram account, YouTube channel, and blog where I talk about exploring the outdoors with chronic illness and disabilities. My primary goal is to encourage other people with chronic illnesses and disabilities to find ways to enjoy the outdoors within their own abilities and interests, and I also enjoy helping non-disabled folks learn what it really means to be disabled.

For today's presentation, I've put together some of the things I've learned and projects I've done over the last few years, and turned them into a practical beginner's guide to being chronically ill and disabled in the outdoors, where the goal is to plan our outdoor activities with our unique challenges and considerations in mind to make our time outdoors as enjoyable as possible.

First, I'll tell you a bit about me and my background, as well as my work through Disabled in the Wild. Then we'll discuss finding the right activities, equipment, and approach that works for us. I'll also go over accessible outdoor spaces, what that means, and how to find spaces that are a good fit for you. Then I'll discuss safety, rest and recovery, and finally resources. Then we can take some questions at the end.

(A condensed list of resources mentioned throughout this presentation is available at the bottom of this page.)

My Background

I am both chronically ill and disabled myself. I've been disabled for ten years and chronically ill for about 20. My primary symptoms include severe chronic pain in both of my legs, chronic fatigue, cognitive dysfunction, as well as mobility issues, so I've also been a forearm crutch user for about eight years.

The crutches help me with a few things, including fatiguing weakness, which basically means the more I use my legs, the weaker they become and the less function and control I have over them. So, I can walk a short distance unassisted, but after a couple hundred feet my legs stop working correctly. The crutches also help with the nerve and muscle pain by taking some of the pressure and weight off of my legs, with shorter and more mild flare ups after using them. The crutches also give me stability, balance, confidence and freedom.

It's because of my crutches that you can find me wandering around the mountains, rivers, and high desert plains of Montana and Idaho, where I like to go rockhounding- my favorite outdoor activity. If you're not familiar with rockhounding, it's where you go to certain locations known for having certain special kinds of rocks, and you go look for and collect them yourself. I mostly like to collect agates, jasper, and petrified wood, with some occasional fossils, crystals, and sunstones.

By looking at me you might not guess it, but rockhounding is actually the perfect fit for my abilities. Most of the sites I visit are on BLM land, where I don't have to walk too far from the truck to get to the collection areas and I can explore at my own pace, going as slowly as I need to, which is perfect because it takes me about an hour to walk a mile and I can usually walk two miles in a day total.

There are benefits to being a disabled rockhound: I naturally walk very slowly, which is ideal for surface collection so you can spot the rocks you are looking for. I automatically have four points of contact when crossing rivers, and trekking poles when I'm hiking uphill or downhill. Plus, my whole life involves being very in tune with my body, steadying my muscles and finding strength and balance where it feels like there is none, so I'm actually quite comfortable and confident on steep hills and in rivers.

I've learned a lot about what works for me in the outdoors over the years, like learning how to take breaks on my adventures and feeling comfortable resting in nature. Sometimes that means using a portable chair, but if I need to, I've also been known to take a quick nap on the riverbed. I've learned what gear I need to bring so I have everything I need for the day with no extra trips back to the truck. And perhaps most importantly, I've learned to be gentle with my body, to listen to what it needs, and go at the pace my body wants. These are some of the things that I talk about through Disabled in the Wild.

Disabled in the Wild

I started Disabled in the Wild in January of 2022 because I wanted to share my love of the outdoors and I wanted to help people, but I was also looking for a place to use my voice and advocate for disabled people after witnessing how dismissive people were of disabled lives throughout the pandemic. I wanted people to know that immunocompromised, chronically ill, and disabled lives are worth living and worth protecting as well.

So I started by creating an Instagram account, where I liked to share pictures, personal experiences, and short stories. I am a writer so I prefer writing long form content, so I created the blog to explain my thoughts in detail and my lived experience more thoroughly, for example the Challenges and Privileges of my Disability Experience. I wanted to help my local disabled community so I took on the project of writing accessibility reviews for some local outdoor spaces after being inspired by Syren Nagakyrie's work for Disabled Hikers. Then I started doing some videos for YouTube, turning some of my blog posts into video format, for example, "Tips for Exploring the Outdoors with Chronic Illness and Disabilities" and "My Must Have List for Outdoor Adventures". I've also made a few adventure videos to show others how I like to enjoy the outdoors and how I do it with my disabilities.

Through my work with Disabled in the Wild, I've been fortunate enough to get invited to give a guest lecture for the University of Maryland, I was featured in two local magazines last year, and I created a video for an event for Explore Austin. This past spring I did a 90 minute presentation for the Montana Library Network, and over the summer I actually helped Montana's Fish Wildlife & Parks on some of their accessibility initiatives. So this is a topic I not only love sharing with others, but it's one that a lot of folks are starting to take interest in, which is great.

Chronic Illness & Disabilities

Before we dive in, I thought it would be helpful to first go over some basics of disability so we're all on the same page. Because when we talk about disability, a lot of folks just think about a wheelchair user who has a total loss of function in their legs, but disability includes a lot more folks than that.

A disability simply means a person struggles with one or more daily functions or activities. It doesn't have to be a total loss of function; it can vary in severity and extent. Some people are born with disabilities due to congenital diseases, others develop disabilities later in life as a result of illnesses or injuries or age. There are physical disabilities that affect mobility where people need to use aids such as wheelchairs, canes, or rollators, but there are also many other types of disabilities: cognitive, developmental, psychiatric, medical, or physical disabilities that don't affect mobility.

Some folks have visible or apparent disabilities, but the majority of disabled people actually have a non-apparent disability, meaning that you can't tell they're disabled just by looking at them. Some folks will have heart or respiratory conditions, neurological, musculoskeletal, autoimmune disorders. Issues with pain, fatigue, dizziness, balance, breathing, heart rate, motor control, bladder, bowels, joints, connective tissue, muscles, fainting, brain fog, executive function, vision, hearing, limb differences— just to name a few.

So the terms chronic illness and disability cover a lot of different people with different conditions who struggle with different daily functions and have different needs. They will also have vastly different abilities in terms of their mobility, range of distance, and activity level. So that's important to keep in mind as we go through this guide.

Outdoor Activities

What outdoor activities might a chronically ill and/or disabled person enjoy? This will depend on what kind of outdoor spaces you have access to, your abilities and disabilities, and what's a good fit for you and your interests. Let's explore some options, starting with higher energy activities, and then we'll go into the more gentle, low energy activities.

Some disabled folks still enjoy hiking, but can't do the longer, more difficult trails, so finding shorter trails with little elevation gain might be a better fit for them. If you're like me, going to BLM land and wandering around looking for cool rocks is a great way to get outside. If you struggle with your legs but your arms are your strength, something like kayaking, canoeing, or rafting could be a good fit. Or if you have the adaptive gear, there's activities like mountain biking or skiing.

If you are interested in trying adaptive sports but don't know where to start, I recommend checking out adaptive sports organizations in your area. Just Google "adaptive sports organizations" plus the name of your town or area, and you'll likely find an organization nearby. These are nonprofit organizations that plan and organize outdoor activities for people with disabilities a few times throughout the year. They will have adaptive equipment and people to assist you throughout the activity, whether it's skiing, paddle boarding, kayaking, mountain biking, and more. However, they do often have requirements to join. For example, you usually have to have a permanent disability and I'm not sure how strict they are on requirements or proof, so it might not be for everyone, but it's an option worth looking into.

For people who have moderate energy levels or mobility ranges, a good activity option could be finding nature trails that have no elevation gain and mostly flat paths with some benches along the way. You can also go to wildlife refuges, forest preserves, or state parks for wildlife viewing, birding, or to practice nature photography. Fishing is another fun activity that you can often do while sitting.

For those who have lower energy and need more gentle or low spoon outdoor activities, you could go to the beach or a fishing access to sit next to a river, ocean, or lake. You could do a picnic at a nearby park. If you don't want to do any walking, you can drive through national parks or national forests and enjoy nature from the comfort of your vehicle. Even better if someone else can drive you.

If you need activities to enjoy from home, you can enjoy your backyard if you have one by sitting or laying in the grass or on a blanket, and watch the clouds moving across the sky or the trees swaying in the wind. You can get a potted plant that you can water, take care of, and watch bloom. If you need to stay in bed or on the couch, place a bird feeder outside your window so you can birdwatch from bed. Or do what I used to do when I was at my sickest: find nature videos to watch online and try to imagine you're there in person. Ask yourself, "What do I see, hear, smell, and feel?"

There's always some way we can connect with nature, even if it's something small or simple, or short. Go for twenty minutes or an hour instead of the whole day. Spending time in nature can look however you want it to look. It's just about finding your own way of enjoying the outdoors that works for you and your body. That's really all that matters.

We have to unlearn how we've been conditioned to approach the outdoors. Many of us have internalized this idea that outdoor recreation can only look a certain way, or you might feel pressure to be a certain way as a disabled person. But you don't have to be an inspiration, or overcome your disabilities, or be a ”supercrip”. You don't need to do everything a non-disabled person does in the way that a non-disabled person does it. You don't have to conquer a mountain to feel proud of your body or get an adrenaline rush to enjoy the outdoors. It doesn't have to be about showing off your strength and power, or going quickly, and it doesn't have to be a ten mile hike or nothing. We don't have to approach the outdoors like that. It’s okay to slow down, be gentle with your body, and just enjoy being in nature.

Accessibility in the Outdoors

What types of features can make an outdoor space accessible or inaccessible for a disabled person? Just like disability doesn't solely mean wheelchair user, accessibility doesn't solely or necessarily mean a paved path. Because each disability and every disabled person is different, their access needs are going to be different as well. The main accessibility categories are parking, restrooms, paths, benches, and signage.

For parking, is there accessible parking? And is there van-accessible parking? Keep in mind some folks require that extra protected space to get in and out of their vehicle. Also, is there a ramp and a clear pathway from the parking lot to the entrance?

For restrooms, are there restrooms available? Are they located farther into the site or just at the parking lot? That can make a big difference for folks with bladder and bowel conditions. Are the restrooms ADA accessible? Are there steps and stairs to get to the restroom?

For pathways, what is the material of the path? It does not have to be concrete or asphalt for it to be accessible, just a firm, mostly flat surface. In fact, paved paths don't work for every disabled person. For example, I would prefer finely crushed gravel trails because they are less painful for me to walk on with my chronic nerve pain, but on the other hand, a finely crushed gravel path may be more difficult for some wheelchair users to navigate. So everyone will have a different need and preference here. There is no one size fits all when it comes to accessibility. For other path materials, chunky gravel is used a lot- I'm guessing because it's cost effective- but it's very hard to wheel a wheelchair through it. Boardwalks are also great but over time, sometimes boards can shift and cause tripping hazards. I like natural dirt trails but in the rain they can become soft and muddy and problematic. So there are pros and cons to every material.

Other factors with paths: how wide are the paths? Are there bumps and holes or is it fairly even? Are there obstacles like tree roots or large rocks, rough transitions, or other tripping hazards? Lifting your feet can be difficult and physically exhausting for some folks, so if there's a lot of obstacles it can actually change the difficulty level of the trail for them. Also, are there steps and stairs or any steep hills? How far is the walk from the parking lot to the point of interest?

Next, are there benches? How many benches and how far apart are they? Do the benches have back support? This would be helpful for people with fibromyalgia or chronic fatigue syndrome where pacing is especially important.

For signs, are the trails clearly marked? Are there signs that point where to go, especially at forks in the trail? This one is essential for people with cognitive issues or folks with low vision.

There are other small factors that might be useful to know for some folks: loud noises, strong smells, large crowds, health hazards like blue green algae blooms.

I also always think it's helpful to know what views and activities are available at a site so I know if it's worth visiting and worth the flare up afterward. Additionally, some outdoor spaces will also have accessible features, like accessible picnic sites, camp sites, fishing platforms, viewing platforms, and even kayak launches.

Finding Accessible Sites

Having detailed and accurate site information is really important to be available so that each person can decide for themselves if a site will be accessible to them. So how do you find this information? How do you know which sites are going to be accessible for you and a good fit for your abilities? Depending on your location, sometimes this information is readily available and sometimes you're going to have to do some digging.

If you're a hiker, there are probably some local hiking trail guidebooks as well as apps like All Trails, where you might be able to find some shorter trails with basic information like distance and elevation gain. Of course, these resources were not made with disabled people in mind, so depending on your disability, they likely won't have a lot of the details you need.

This is something that Syren Nagakyrie, the founder of Disabled Hikers, noticed back in 2018, which is when they started writing detailed hiking trail descriptions with accessibility information. If you're in the Pacific Northwest, I highly recommend getting the Disabled Hikers guidebooks, which have a lot of site ideas for a variety of ability levels. Disabled Hikers is also working on adding additional trails to their website, so be sure to check out their blog at DisabledHikers.com.

Syren's work is what inspired me to write some accessibility reviews for my area, so if you happen to be in Missoula, MT, you can find my reviews on my website disabledinthewild.com. Also, Freya at Access Birding is currently writing a book of accessible birding locations in the US that will be published next year, so keep an eye out for that.

Unfortunately, most places won't have a helpful guide to point you where to go, and most people will have to start from scratch finding that information themselves. So I would start by searching on either Google or Google Maps for "outdoor spaces near me"," state parks near me", "hiking trails" plus your area, etc., or just scroll around on Google Maps looking for green spaces and green icons, and start gathering the names of sites that you want to look into.

When you have some site ideas, see if there is information available on the FWP, USFS, or other official government sites. What and how much information is available there is going to depend largely on the state and the site. For example, the Michigan Department of Natural Resources website has a page dedicated to accessible recreation and which sites are accessible. Hopefully soon more states will follow suit, but at the moment, most states don't have a dedicated accessibility page, and you'll have to go through each site individually to find the few basic details that are available. Unfortunately, in addition to limited information, I have also seen inaccurate information on these websites before, so take everything you read with a grain of salt.

If the official sites aren't helpful, check out recent blogs and Google reviews and see what information you can gather there. Check out the pictures people share too, because sometimes you can get the information you need that way instead. With reviews and blogs, just keep in mind people have different perceptions of sites and might describe them in a way you wouldn't. What one person calls "easy" or "accessible" might not be easy or accessible to you. Plus, sites change, especially in places with annual spring runoff and flooding that might affect the path or the entrance.

You can also look at each site on Google Maps with satellite view to get an idea of the area and layout. Sometimes I even measure the distance from the parking lot to the point of interest if I can't find that information elsewhere. To measure distance in Google Maps, you left click on the map on your desired starting point, then right click on your pin, and select measure distance. Then left click your end point on the map and it will tell you the estimated distance.

There are lots of creative ways to find information. It's up to you how much you need to know beforehand and how much digging you're willing to do online. You can never fully know what a site is like until you get there, but it can be helpful to look it up first to try to be prepared. If people are saying the road to the trailhead is super bumpy and windy, I know to bring nausea medication. Or if I'm going to a park with no benches, I'll bring my portable chair.

I also recommend having a backup plan in case your first choice of site turns out to not be a good fit for you after all, then you're not traveling all that way or causing a flare up for nothing.

Equipment

Moving onto equipment. What can you bring or use that might make your outdoor adventures easier? What outdoor gear can help support you? First and foremost, I want to talk about mobility aids because a lot of folks really struggle to start using them. People sometimes feel embarrassed, self-conscious, or think their condition isn’t bad enough, but you don't need to have a total loss in function in order to justify using a mobility aid.

If you think a cane or rollator or trekking poles can help you reduce symptoms like pain or fatigue, or increase stability, balance, endurance, or confidence, and that’s all it takes for you to get outside more and enjoy the outdoors, then it’s worth it. Increasing your quality of life is a completely valid reason to use one. And you don't have to use the aid all the time, every day, or for every activity, just when you feel like you need it.

I wish people knew that mobility aids are not a negative thing. Using an aid is not somehow giving up on yourself or “giving in” to disability. Mobility aids exist to support our bodies the way they need to be supported and help us continue living our lives the way we want to live. They can make it possible to go to certain places or do certain activities, or just do more in general. That's why so many people view their aids as freedom. I, for one, couldn't do any of the things I do outdoors or indoors if it wasn't for my crutches. They are a wonderful, positive addition to my life.

In addition to mobility aids, I highly recommend looking into adaptive equipment rentals for your area. These places are usually a nonprofit where they have various mobility aids and equipment that you can rent for a certain number of days and a certain price, although it is often free. To see if this is available in your area, just do a Google search for "adaptive equipment rental" plus your town or area.

For example, in my area, we have the Montana Assistive Technology Program. The equipment is typically free and you can borrow them for anywhere from a month to 180 days for some gear. All you have to do is make a reservation on their website, pick it up, use it wherever you want, and then return it. You can borrow mobility aids like rollators and wheelchairs, including all-terrain and beach wheelchairs, as well as ramps to get the chair in and out of your vehicle. There's also adaptive outdoor gear like kayak and boat equipment, adaptive ski sets, even bow hunting wheelchair attachments, and more. This is an amazing resource and I would encourage everyone to utilize it.

There are also certain outdoor spaces that will have their own adaptive equipment available to borrow at that particular site on the day of your visit, for example a state park might have a wheelchair or two available at the visitor's center that you can use on specified trails within the park. To see if this option is available, go to the park's official website and check for an accessibility section to see if they have equipment to borrow, or contact them via phone or email.

I've also seen more specialized beach wheelchairs or all-terrain wheelchairs available through a wider area like the town, the county, or through universities, where there's some flexibility on where to take the equipment for the day or a couple of days. For example, this all-terrain trackchair in South Dakota is available through the university, it comes with a trailer and you can take it wherever you'd like within the state for up to two weeks.

I was also recently in South Carolina and I was looking up accessible public beaches, and stumbled on the town of Sullivan's Island, which has a beach wheelchair you can rent to take to any of their beach accesses for the day.

Lastly for equipment I wanted to talk about outdoor gear and finding your own personal must have list for outdoor adventures. Everyone's must have list will be different of course, depending on the location you're in, the terrain, what activities you're doing, plus your particular illnesses and disabilities. I shared my own must have items on my YouTube channel and blog, where I talked about which outdoor gear is most helpful for me and some of the things that I have to think about when choosing outdoor gear.

For example, the backpack I use has to be tall and narrow, so I can still fit lots of stuff in it, but my elbows aren't bashing into the pack as I'm walking with my crutches. I also bring a portable chair or stool wherever I go. They're both lightweight and compact. The stool sets up in about ten seconds; I use it when I need to take a quick five minute break while walking. I use the portable chair when I'm staying a bit longer in one spot. It takes two minutes to set up, and then I have a safe place to sit back and rest my back, shoulders, and abdomen.

My hiking boots have to be super lightweight and non-bulky so I don't trip over my own feet. For my forearm crutches, I usually use a specific brand for hiking called Sidestix. They are lightweight, have ergonomic grips, and shocks. I also like Millennial Medical’s In Motion Pro’s which also have ergonomic grips and spring assist, and are way more affordable. I also wear weight lifting gloves to protect my hands while walking, which is especially important when you are weight-bearing on your crutches, otherwise you can rip holes through your skin after walking long distances. Ask me how I know.

As a rockhound, my hands are constantly covered in dirt, mud, algae, and probably cow poop, so I bring hand wipes and hand sanitizer to clean my hands when I need to eat food with my medication. I also bring a dry bag to keep my medication water and dirt-free. And lastly, I always like to share my pro-tip for those with a vulva and especially an overactive bladder: if you don't like packing out used toilet paper but you also know drip drying isn't quite good enough, I recommend wearing a small cotton pad, like panty liners for menstruation or incontinence, to absorb any excess moisture after squatting in the bushes.

So those are some of my must haves. Hopefully this helps get you brainstorming what outdoor gear would be beneficial to you and what features you might want to look for in that gear.

Safety

I also want to touch briefly on safety, because the reality is that, as chronically ill and disabled people, we are more likely to have issues come up outdoors. I've nearly passed out in the middle of a river before. I've been caught in lightning storms because I couldn't walk fast enough to get out of there in time. There was one time where I got confused and disoriented when I was rockhounding alone and I accidentally made a wrong turn. By the time I realized it, I had walked too far, my legs stopped working, my knees kept buckling, I fell a few times, and I even tried crawling, because it was 4 pm and I didn't have cell service to call for help.

Sometimes things happen when you have unpredictable symptoms. Exploring the outdoors when you have known health issues can be a risk, so it's important to be careful and take extra precautions to limit risk as much as possible. Make sure you're thinking realistically about your abilities and what is safe for you to do. My message is not about just ignoring the reality of your body, disabilities, or symptoms, and doing whatever the heck you want. It's about figuring out what actually works for you and your body, and finding that balance and the intersection between your disabilities, your strengths, and your interests.

So here are a few more suggestions for staying safe:

Number one: go with other people if you can, because then if you have any unexpected symptoms show up or run into issues, you'll have help. It's also a good idea to communicate with the people you're with what you might need should a health emergency occur. I recently went rockhounding with someone who has a heart condition, and he told me, "If I start acting funny, just give me the pills in my pocket." He didn't expect an issue to occur, but it's a great idea to tell people in advance just in case something happens. It's also a good idea to communicate your access needs to the people you're planning to recreate with. For example, I usually share with others that I can walk pretty far but I cannot walk fast, I need to go slow, and I need to take breaks. That way, they know what to expect from me and we're all on the same page.

If you want to go alone, try to choose a popular trail or park where there are other people in the area in case something happens and you need assistance. If you're a disabled hiker, then just like any other hiker, make sure a friend or family member knows where you are going and when to expect you back, and if they don't hear from you by a certain time, then they contact someone like the game warden or park ranger. You can also carry an emergency beacon, basic survival gear, and have offline maps on your phone if you get lost. It's also a good idea to wear bright colors or have something bright with you in your pack so you're easier to spot. Lastly, always bring plenty of water, pay attention to the time and the weather, and give yourself plenty of time to get back to your vehicle.

Rest and Recovery

We've talked about equipment, aids, and adaptive sports, but sometimes it's not about fitting our bodies into how we recreate outdoors, but adapting how we recreate outdoors to fit our bodies. Ask yourself, "what support does my body need to make this trip more comfortable and enjoyable for me?" One of the most helpful things we can do is rest, and not just during our adventures, but before and after as well.

Rest is important in the days leading up to your adventures in order to save your energy and make sure you're starting that activity with low symptoms, so you can enjoy yourself as much as possible. And it's important to rest after your adventures, because it's pretty common for people with chronic illnesses to have flare ups after doing pretty much anything. So when you're planning an outdoor activity, also plan for the inevitable flareup afterward. Just expect it, be prepared to take some time to rest, recover, and let your body heal. Chores and to-do lists can wait. Just be extra gentle with yourself and take good care of you.

The same goes for during our adventures. Taking breaks periodically, for example, sitting down to rest for five to ten minutes every hour or so, is a really good way to check in with yourself, help manage symptoms, and keep everything regulated. This can make all the difference in getting to spend more time outdoors, having less symptoms, making it a more enjoyable day, and maybe making it an easier recovery in the days afterward too.

I know rest is something that a lot of us struggle with, myself included. So many chronically ill people are ambitious overachievers who don't know how to rest or quit. It doesn't help that we live in a world that tells us to ignore our bodies and push through our limits at any and all costs. Of course, when you're chronically ill, you have to push through symptoms at some point or you'll never do anything at all, but there's a difference between pushing slightly outside of symptom tolerance and completely destroying your body. It takes a long time to unlearn that tendency to overdo it. For many of us, the hard part is not doing more, it's doing less. It's slowing down, taking breaks, and listening to what our bodies need. So I want to remind everyone that "pushing through" is not the only strength we can carry. Listening, resting, and pacing are all strengths too.

The great thing about taking breaks is that it gives you time to really take in the view, enjoy the scenery, and truly experience a place rather than just passing through. And really, that's the reason many of us even spend time outdoors in the first place: to connect with nature, enjoy the views and sounds, be in the moment, and admire the beautiful world we live in. When we recognize that simply enjoying the outdoors is the goal, it's easier to let our bodies lead the way, to be mindful of our symptoms and know when our bodies need tending to, when it's time to rest and when it's time to go home. Because if the goal is to enjoy ourselves outdoors, then we must also enjoy-or at least tolerate- being in our bodies while we're out there.

A New Approach

Being disabled has given me a new outlook on exploring the outdoors. It's a much slower, more intimate and grounded approach to the outdoors, and I have grown to appreciate this new way of being in nature. I love that I can let my body lead the way, so I can more fully enjoy where I am in the moment. I'm not as anxious about what symptoms may arise, because I feel safe and at home resting in nature and tending to my body as needed, which feels very special. I have no interest in fighting my body or conquering a mountain or being an athlete. I just want to sit next to the river. I want to drive into the grasslands and wander around for a while. I want to be gentle and go slow; to lean in to what my body needs and explore at my own pace and within my own abilities. I want my body to be enough as it is. And I want other disabled people know that that's an option too.

Learning this new approach doesn't happen overnight. It can take years to adjust to your new life and new limitations, and figure out what works for you. You have to first go through a period of grief and acceptance; you have to let go of the way you used to do things and find a new way to do them. It can be really difficult for people who became disabled later in life to accept they can no longer do what they used to. For some people, this will stop them from pursuing outdoor recreation altogether. When we return to the outdoors with our new limitations, we often have the same expectations of our bodies that we did before becoming sick or disabled, and we make comparisons with how we used to do things. That makes the adjustment even more difficult.

It's really important to first take the time to allow yourself to grieve, and then when you're ready, try to start over. Meet your body where it is right now. Get to know this new you and your new body. Learn a new way of interacting with nature and existing in the outdoors. Be open to trying new activities, or trying your old activities in new ways.

And try to remember that each day is going to be different. There are going to be days when your body will cooperate and you'll have a great time. There are going to be days when your symptoms will be higher and your body needs more support, but it will still overall be an enjoyable day. And then there are going to be days when it doesn't matter what you do, how much you prepare, how slow you go, or how much you rest, sometimes your symptoms will be unbearable, and it's just going to be a crappy day outdoors. I'm not saying it's always sunshine and rainbows, because it's not. There will certainly still be times when you get frustrated with your body and you won't want to deal with your limitations.

It's an ongoing process of adjusting and accepting, but we're nothing if not adaptable. Over time, we make room for our illnesses and disabilities, and living with them becomes our norm. This is why I find it so important to show through my work not just that I am exploring the outdoors but sharing how I am doing it: how my disabilities affect me, how I accommodate them and adapt, and how I continue to work with my body. I want to show others that we can and we do figure it out and find our way forward. Life goes on after disability.

Normalization

I would also like to normalize disabled people existing in outdoor spaces.

Some people are actually surprised to learn that chronically ill and disabled people are interested in outdoor recreation, but losing our abilities doesn't mean we lose our interests. Of course, when people are new to chronic illness or disability, it can definitely feel like the outdoors are no longer for you, and that's why representation is so important. They say, "You cannot be what you cannot see", and I want to show disabled people that these spaces are for them too. Everybody belongs outdoors.

When non-disabled folks see disabled people in the outdoors, it challenges their assumptions and socially conditioned biases about what it means to be disabled. Ability, like so many other things, is not a binary but a spectrum, and we all have our own limitations and support needs, including non-disabled people, whether it's two miles in a day with forearm crutches or ten miles in a day with trekking poles. A disabled person's limitations and support needs may be more profound or obvious, but it doesn't make our adventures inherently less fulfilling and our time in the outdoors any less valuable.

We will all at some point need to grieve the loss of our abilities. Any one of us can become disabled or more disabled at any time, whether it's from illness, injury, or age, and we will all eventually become disabled if we live long enough. When we are able to see examples of disabled people living their lives with their disabilities, and especially when we see examples of disabled folks doing something we love to do, it can be encouraging to know that- whatever happens- we can find a way to continue doing the things we love too. So that's what I hope to provide for both disabled and non-disabled folks: Hope, reassurance, and encouragement.

Resources

Another one of my goals is to raise awareness and educate people on disability, so I have some book recommendations for everyone:

  1. Demystifying Disability is the perfect introduction to disability because it covers a lot of basics. This is the one I recommend to everyone. It's a great place to start.

  2. Disability Visibility is a collection of essays put together by Alice Wong, and it's written by people with various disabilities and backgrounds addressing various topics and issues. It's a great introduction to the lived experience of disability from different perspectives.

  3. Care Work is the one I most recommend for disabled people, especially those who are interested in community and activism.

  4. A Disability History outlines the history of the concept of disability in the US, who that term has included at different times and how it has changed over time, as well as important legislation and policy.

  5. Crip Kinship and Skin Tooth and Bone: both of these are also for disabled people who are interested in activism, as well as the culture and art of the disabled community.

You can read summaries and reviews of these books on my blog if you're interested. I also wanted to mention this book that is next on my reading list, by Missoula author Sarah Capdeville. The book is called Aligning the Glacier's Ghost. It intertwines stories of chronic illness with stories and descriptions of Western Montana landscapes.

I also recommend checking out my blog posts, including "Tips for Exploring", "My Must Have List", "Accessibility in the Outdoors", and "Why I'm Writing Reviews for Local Outdoor Spaces". I will also be adding the transcript from this talk and a condensed list of the resources I have mentioned in one spot to make it easier to find those resources. Go to disabledinthewild.com/blog/nlm.

Lastly, the National Library of Medicine has some wonderful resources that might be of interest to folks with chronic illnesses and disabilities. Go to nlm.nih.gov and you will find a variety of sources for health information, including Pubmed for biomedical literature, clinicaltrials.gov for clinical studies, and Medline Plus for reliable and easy to understand health information on topics like illnesses, drugs, and medical tests. These resources are really important to have, especially in a time like this when misinformation is so prevalent. The great thing about NLM is that you have this trusted information all in one place, and you can get the data and research from the actual sources.

So let's say you want to look up information on your diagnosis, for example. We can start on Medline Plus where there's easier to digest information for us civilians. You can go to health topics and search for your illness, or if your doctor ordered a test or prescribed a medication and you want to learn more about it, you can do that here too. Or let's say you're curious about clinical trials related to your condition, you can look that up on clinicaltrials.gov. There's also a helpful section under the "Study Basics tab" on how to read study results, which is very important. Then you can look at other studies done on Pubmed and find citations and abstracts of biomedical literature. The site does mention that it doesn't include full text journal articles, however, links to the full text are often available.

From the main page, you can also go to the tab, "Resources for You", and click on "For the Public". This page talks about the resources I just went over, as well as a link to a page of exhibitions on the social and cultural history of medicine, and the digital collections, an online resource with books, images, and videos.

So there's tons of information available here. I've been excited to dig into some of this myself, because I have a background in anthropology and I'm very interested in medical anthropology. In the future, I hope to do more learning about models and approaches to Illness and wellness, so this will be a great resource for that.

Closing

In closing, I always like to leave everyone with this: We don't always get to choose what happens to us or the challenges we face. Life with chronic illness and disability can certainly be difficult and challenging, but we can still have meaningful and fulfilling lives. We are here for such a short time and I don't want to waste my life wishing it were different. This is the one life I know I'm going to have and I plan to enjoy it no matter my abilities. I hope you all do too.

Thanks everyone again for joining, here is my contact information if you want to reach out to me, or you can feel free to ask questions in the comments.

Resource List

Accessibility and Adaptive Links

Amy Denton-Luke
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