By Elsa Sjunneson
The instructions for visiting The Island had been very strict. No GPS devices, no tracking. We could bring a camera as long as it wasn’t hooked up to the Grid, and we couldn’t bring our cell phones.
Any biohacking parts were required to be taken out before we were allowed to approach.
My team, a small group of journalists and social scientists, agreed.
The Island had been established as an independent outpost to support the lives of disabled people. It was a unique location, but because of threats to their lives—very real, and unimagined—we were required to help protect them during our visit.
My crew set out early in the morning, following all the procedures that had been laid out for us by the leaders of The Island.
Our purpose was to tell the world what was possible, when you stopped to think about how adaptations worked.
Our first shot was perfect. The sun was beginning to rise over the San Juan Islands, the steel-blue water waving in front of us. The wheelchair ramp dock led straight into the sea—but we had been told to expect this. One of the first design imperatives was to create a way to get the Island’s wheelchair-using residents on and off of boats without ever having to be removed from their chairs.
As we docked, I could see that a small group had formed to watch us disembark. I tapped my camerawoman on the shoulder.
“Remember, faces are fine, we just have to get the consent of everyone on the island.” And then I dispatched my PA, who leapt out of the boat, soaking his shoes as he navigated forward with sheaves of consent forms in his hands.
For a moment, I let the camera linger on their faces. They were suspicious, but they were also proud.
“Hello, I’m Isla. I’ve been asked to be your guide today.” The woman stepped forward with the sweep of a long white stick in one hand. One eye appeared to be made of glass; the other twitched and quivered as it tried to make out my face.
“Sophia Park, I work for—”
“Yes, yes, we know. Please come with us, the cameras can follow.” With that, she turned her back on me and took off at a quick pace—faster than I’d expected for someone with her abilities. Then I looked down.
Embedded on either side of the pathway were raised stones, marking a safe route through the forest. Not that she needed it; the cane never touched the stones, her whole body engaged with leading the way down the path. I gestured for the cameraman to get the shot.
The pathway was laden with pine needles, and surrounded by giant trees that had never seen a logger in their lives. Isla was dressed carefully in corduroy pants that seemed worn, but comfortable, and a cable-knit sweater that had been made with love and careful hands.
The forest path eventually opened onto a large field.
“This is where our preschool is. We don’t have a lot of children on the Island yet. But we have plans to age up their education as we do.”
“Are all the children—” I start to ask a question, but stop myself short. Whether or not the children are disabled isn’t my business, nor is it relevant. But Isla laughs heartily. She’s used to the question, I can tell; she’s laughing at me, not with me. I swallow my embarrassment and pay attention.
“Some are, some aren’t. Not all disabilities are ones you’re born with.”
I look out onto the field. The play structure is wheelchair-friendly, with tactile surfaces and high-contrast colors for blind kids to use. The swing set has a multitude of types of swings, also in bright colors, pebbled with different textures.
We moved on past the big field, the play structure, and the schoolhouse that I desperately wanted to film, but which wasn’t on our approved shot list.
We moved on through the forest towards the housing structures.
“When it comes to the children, we all work together. The kids know which adaptations their parents need, and they use them.”
I’d been most excited to see the housing structures, but they’re also what had prompted the request by the Island’s residents that we not bring our own connected tech or bio-bits onto the grounds.
As we approached the buildings, at first they looked like nothing more than rustic cabins, rough-built and homey. As we drew closer, I saw that I was wrong.
One home had a wooden wheelchair ramp leading up to the front door. Our guide led us forward toward this house. As soon as her cane touched the ramp, the lights switched on outside and inside.
“Each home is designed with bespoke technology to support the inhabitant. Vocal controls on lights, temperature, entirely keyed to the individual or individuals who live there. It’s why we don’t want any outside technology. We built these homes to protect our residents from manipulation. The same goes for the adaptive aids.”
She gestures to a woman speaking animatedly in sign language to another resident. In her ears are bright-purple molds encrusted with glitter, the small hearing devices hidden behind her busy hair.
“Margie’s hearing aids are hooked up to her house, but also to the audio system we have built into the grounds. She can hear announcements, dance party music, all without having to worry about asking for us to turn on a T-coil. Our announcements can be anything from asking if someone can find one of the children in the woods, to storm advisories when the winds come. It’s important for her safety, and everyone else’s, that we be able to communicate.”
As my camerawoman slides into the door, I watch through the viewscreen on her camera. The inside of the cabin has wide floors, with carefully spaced furniture to allow the owner to move around seamlessly in her chair. The loft bedroom has a beautifully made wrought-iron lift, so that she can transfer out of her chair into the loft bed with ease. A bassinet sits in the corner of the loft. I’m not sure where the occupants are now, but it’s clear that they can go wherever they want here.
“But why?” I finally ask, “can’t you live like this with the rest of society?” I know we have the technology. The ability. The fact that they choose this island, far from the rest of the nondisabled community, baffles me.
“We used to,” Isla says, sighing. “For a long time, each one of us lived in the nondisabled community. We tried. But the truth is, we had to imagine a world for ourselves, because no one else wanted to. Here, if anyone gets sick, we wear masks to protect each other until the contagion is gone. If someone needs a specific food, we can help. Out there, we have to trust the nondisabled people to take care of our needs, and so often, they refuse out of their own self-interest.”
Being nondisabled, I catch myself wanting to fight back, to argue that we all just want to help. But I remember my own lack of interest in supporting people who needed different things than I did—my complaints at the loud cheeps of a crosswalk alert for blind neighbors, tolerating my wife’s impatience with a blind woman trying to order at a coffee shop, my own frustration with the long waits as wheelchair users boarded buses and trains.
“So… we’ve shown we can’t be trusted?” I ask. I know it’s a leading question. But it’s the right one.
“No, I’m afraid you can’t. What I need—walkable sidewalks, assistance with reading a check or credit card number… it often turns into a vulnerability. Something for a nondisabled person to exploit. Here, I can trust that what I need to live my life isn’t just available to me, but it’s available without fear.”
She walks past me and leads me back toward the large field near the school. The cameras follow her graceful path back as the sun begins to set through the trees.
“Tonight, like every night, we’ll eat in our communal dining hall. Some will take their meals back to their rooms, some will eat in community, but we’ll all at least meet for a moment.”
She leads us through the doors of a giant cabin, with plenty of space between tables for wheelchairs and walkers to pass. In the kitchen, visible through a giant pass-through window, there are people speaking sign language, counters set at appropriate heights for the Little People in the community, and a service dog napping just outside the door.
“The community cares for one another in many ways, but most of all, it’s that nothing is out of reach—sometimes literally, but often metaphorically. We choose to make it easy to live.”
I think back to how I’ve complained about all sorts of adaptations, things that barely would have inconvenienced me. I can see it passing through the minds of the crew as well.
Isla smiles at me. “Take these messages back to the people on the mainland. Show them it’s possible. I know I’ve made you think, but perhaps you will help others to think as well.”
As we film everyone talking and eating, taking careful close-ups of the straws, tactile plates and other tools throughout the hall, I know not everyone will understand. Some people will think the residents of the Island belong out here, on their own, away from society. But me?
I know we’ve made a mistake not creating this space on the mainland. Somewhere we can learn from each other. I know I’ve misunderstood for my whole life, and the changes I will make will be for the better.
As my crew boards the boat, I turn around, assured that it’s just me and Isla and the lapping saltwater waves.
“I suspect you thought I was nondisabled,” I say, finally ready to reveal my own truth—a truth I’ve hidden my whole life, afraid of the same things Isla herself is hiding from, out here on this island. Instead of speaking, I reach out and take her hand, letting her feel the throb and shake of my own. “All day, every day, for my whole life there has been pain. I see the world can be different. That I don’t have to push any more.”
I breathe in before speaking the words I’ve been wanting to say since I set foot on the island. “Can I come home too?”
Elsa Sjunneson is a three-time Hugo Award–winning author whose memoir about Deafblindness, Being Seen, also won a Washington State Book Award. Elsa lives in Seattle, Washington with her husband and two children, in a house filled with books. She fights to deconstruct ableism everywhere she goes.
Us in Flux is a series of short stories and virtual gatherings that explore how we might reimagine and reorganize our communities in the face of transformative change.