Greg is singing the praises of a beach-side campsite in northern California.
“Ooh, I have to add that to my bucket list,” says Mary Rose, getting out her phone.
(Mary Rose’s bucket list includes the whole world, as far as I can tell. She is spiritedly racing the clock of debility, before spinal stenosis limits her further. She loves every campsite our caravan chooses. All she asks is that we park close enough that she can socialize without having to walk long distances. Even we introverts willingly scoot together.)
When I don’t reach for my phone to make note of this Edenic campsite, Greg cocks a quizzical brow. I explain that I don’t even have a bucket list; I assumed I’d never be able to do anything on it. A realization is slowly dawning.
“I wonder if I’m limiting myself unnecessarily.”
Greg and Mary Rose both smile.
“I’m glad to hear you say that,” Mary Rose says. “I don’t think you’ve fully absorbed the freedom your van can give you.”
“We’re having a campfire tonight. Gwen’s bringing her guitar, and I’ll have mine. Bring your ukulele and play a song for us,” Zeke suggests—again.
“I’m not very good yet.”
Zeke isn’t impressed.
Eventually I gather my courage to play and sing “When You’re Smiling.” Cheers follow.
“Charlie Chaplin wrote that,” says Zeke.
Gwen smiles warmly and talks about how playing in supportive groups encouraged her when she started, too. She launches into a Mazzy Star tune, and the songs keep flowing.
Evan glances away, his voice gentle. “I know you’re not able to hike, but you miss exploring. Is there a reason you don’t break camp to explore by van?”
Oh. There isn’t. I realize that I’ve been conditioned by camping alone in Colorado over the summer not to leave a campsite lest I lose it. Now I have fellow campers who are glad to save my place.
“I’m stuck in deep sand. Can you pull me out?”
“On my way,” Zeke texts back. While I wait, I make a cup of tea and relax in desert sunshine with my ukulele. Soon Zeke shows up and unearths a snatch strap from his arsenal of recovery gear. He’s perfectly cheerful about having to break camp and wallow in sand under my van to attach the strap to the front axle. In moments I’m mobile again.
“I may have to leave,” I tell Tess. I’m not used to socializing. I haven’t conversed with five people at once in years. I struggle to process all the information in a conversation. And people keep dropping by my van to chat, as if they want my company. My brain is fried, and I’m exhausted, unable to recover after a flare-up without full rest.
“No, don’t leave!” she replies in dismay. “We’ll find a way to make it work. You can put up a flag or something when you’re up for company. Just please stay.”
Just please stay.
Except among my inner circle of family and friends I have never encountered people who accepted my disability so readily, with so little judgment; who encouraged me to stretch my limits without denying them; who accommodated them with so little resentment. Not once in the 4 1/2 months I camped with this shifting constellation of people did I feel pressured to “pass” for able-bodied.
My experience in 26 years of illness, including six of disability, is that most people are willing to accommodate limits—right up until the moment those limits affect them. That’s when you become a whiner, an oddball, a wuss; someone without the gumption or will or character to keep up. The disabled, neuro-atypical, ill, or elderly who want full access to a world built for others are not always considered fully fellow humans, but rather an irritating, “less-than” minority making inconvenient demands of the “real” people. We may be accommodated out of pity or under duress, but seldom because we’re desired. Because people want our company.
I have often found it easier to harm myself by trying to “pass” in public for abled or to withdraw from the world of the (temporarily) able-bodied than to be thus diminished. The fight for self-hood can feel like the ultimate exercise in futility, because people who don’t see you as “real”…don’t see you.
“Just please stay.”
One member of our caravan has hiked the Appalachian Trail; one was a wildland firefighter. One ran ultra-marathons, another served in the Navy for twenty years. One walked across America and rode the rails as a hobo for fun. One raised a child at 16. These are not people who twiddle their thumbs.
What grace made them open to limitations, taught them to understand human value as separate from ability? To care more about the “content of someone’s character” than their capacity to perform up to standard?
Why did they value me enough to accommodate my disability when others have not, even though I have been the same person to them all? Are nomads—people for whom “So, do you have a sink?” is a genuine, curious question—just predisposed to see a broader range of normal?
I don’t know. We certainly had our share of -isms, judgments, and divisions. I just know that in this caravan, ableism wasn’t one of them.
It matters, more than I can tell you, to belong.
I encountered my caravan through the Homes on Wheels Alliance. HOWA is a not-for-profit that prevents unsheltered homelessness and supports nomadic communities. Every winter they organize caravans in the desert southwest. I joined one simply hoping for a sense of safety. I certainly found a great deal more than that.
7 thoughts on “Caravan”
This is great Stacy. As the child of a severely disabled adult, so much of what you’ve written about acceptance as a whole person and not ‘a drag’ rings true. Family parties … family holidays … shopping trips *shudder*. Also love your beautiful photos. I do hope you stay with your People. x
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Thanks, Jacque. As I was writing, I wondered if things had changed some for your son’s generation, or if he was still pressured to “pass.”
Our caravan has separated for the summer but has plans to rejoin in the fall. With the huge range of climates in the US, the world is a nomad’s oyster in warmer weather, so we’re all over the place. In the cold seasons, we all converge on sunny, dry Arizona.
Pressure, probably not. But camouflage for sure. Glad you have plans to rejoin the caravan. Take care xx
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It sounds as though you have found a wonderful community of explorers.
I was incredibly fortunate, Jean.
I feel so warm inside reading about these amazing people and how they have taken you in and accepted you fully…what a wonderful and rare thing to find this. I feel similar with our current neighbors. And the blue skies with all the colors of the desert are amazing. I do miss the beauty of the desert.
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It really is wonderful and rare, Donna! Good neighbors make all the difference. Glad yours know how to appreciate you, too!
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