My wife Nellis -- Director of Equity for Sierra Club and the usual author of this blog -- and I have been exploring and enjoying the planet together for over ten years. When I was diagnosed with lupus a few years ago, we promised ourselves that we wouldn’t let our health challenges stop our adventuring. But it hasn’t always been easy.
Suzanne enjoying the outdoors
People with disabilities are excluded from public life, and especially outdoor spaces, in a million ways both visible and invisible. Living with lupus means being careful about getting my heart rate elevated, staying out in the sun, or tiring myself out. On bad days even a flight of stairs can cause a lupus flare that could take me more than a week to recover from. So when I do get outside to enjoy the fresh air and contemplate my existence in this beautiful world, I take pride in my accomplishment. The first trip I took after being diagnosed with lupus was to the White Sands National Park in New Mexico. I was so afraid of not being near a hospital in case of an emergency, or of getting sick from being in the sun for too long, but with every step I took I felt just a little bit more in control of my life and my health.
As Nellis has written in the past on this blog: identities intersect. Our Native and queer identities often make us a target for bigotry. Living at the intersection of several marginalized identities means that we have to think twice about everything we do. If we’re adventuring near the border of the U.S. and Mexico, we have to think -- will the color of our skin attract attention from violent militias, or from the Border Patrol? When we’re deciding which national park to visit next, we have to think -- is the surrounding area a safe one for queer folks? (The answer is usually no, and we take our chances.) And no matter where we go, whether outdoors or just to a restaurant for dinner, we have to wonder -- is this space ADA compliant? Is there an elevator, or will I have to climb stairs? Are there any accessible, paved hiking paths? It gets complicated quickly.
But we live our lives. We recently went on a trip to Rocky Mountain National Park with a friend and had a great time thanks to an accessible trail we found. It was wide, paved, and flat, making it possible for me to get out of the car and explore. But often we visit parks where no such facilities exist.
Visiting Rocky Mountain National Park
People with disabilities are coming up with our own solutions and work-arounds to address the obstacles we face in accessing nature. A few years ago, Nellis and I published a whole series of videos on Youtube called Kickin’ It with Lupus, to share some of the tips and tricks we have come up with to make camping and hiking possible and comfortable for people with lupus and other disabilities. Check out the video below for some practical advice on how to make your next outdoor adventure inclusive for people in your community who live with disabilities.
Array
It feels powerful to take control of my own destiny by finding ways to explore and enjoy the outdoors that work for me and my body. But leaders in outdoors communities, policy makers, and outdoors enthusiasts can also work to make outdoor adventure more accessible. A great example is the lifetime pass for folks with disabilities that allows me access to every national park in the U.S. This fantastic policy from the National Park Service recognizes that disabled folks already face a ton of barriers in accessing national parks, and cost shouldn’t be one of them. But it might not be around for long -- a couple of months ago, Secretary of the Interior Ryan Zinke blamed disabled folks, veterans, older people, and children for funding issues in national parks. He told the Senate Energy and Natural Resources Committee: “When you give discounted or free passes to elderly, fourth graders, veterans, disabled, and you do it by the carload, there's not a whole lot of people who actually pay at our front door.” A lot of progress has been made, particularly by the National Park Service, to improve accessibility for folks with disabilities in our national parks. But all the progress we’ve made can be undone in an instant by an administration hostile to my very existence.
All of us can work toward a more inclusive world for folks with disabilities in every aspect of our lives. One of the ways to show up as an ally to people with disabilities that feels important to me is to use people-first language. That means acknowledging the fullness and complexity of my identity and life experience in the ways that you refer to me. I’d rather not be thought of as a “lupus patient” or “disabled person.” My name is Suzanne, I live with lupus and I love the outdoors and work really hard to spend my time there. Now if only the people my wife and I ask to take our obligatory picture in front of every park’s designated sign knew how much physical effort and years of advocacy went into making my visits to our national parks possible, then maybe they would stop taking pictures from our waists up. I can’t help but suspect the sight of my forearm crutches or my walker is what they are trying to exclude. As if I made it to this spot to get my picture taken looking just like everyone else. That is not my truth and I am proud of my journey and the accessibility aids that make it possible. One day I hope to live in a world where people with disabilities are fully included in public life, seen as complex individuals with much to contribute, and have access to all the same opportunities and spaces as people without disabilities.
It's a big world out there. Discover it with us: View our 2018 Sierra Club Outings trip brochure.