Conversations on Tech and Social Justice: Kenny Salvini

Kenny Salvini founded the Here and Now Project, a local non-profit that connects people whose lives have been affected by paralysis.  (Photo by Luke Savot.)

As a self-identified “adrenaline junkie,” Kenny Salvini learned to ski when he was only three years old — a hobby that would drastically change the course of his life.

Eight months after graduating college, Salvini headed to Snoqualmie Pass for some night-skiing with his father. He took a jump too fast, fell 40 feet onto his head, and was permanently paralyzed from the shoulders down. 

I spoke with Salvini almost sixteen years later. “All I can do is shrug,” he said, moving his head and shoulders to demonstrate. “I drive the [wheelchair] with my head—it’s all sensors in the headrest.”

After returning home from the hospital, Salvini entered what he called “a six-year dark spell.” He was depressed, sore, isolated, and emotionally lost. “If I can’t be that adrenaline junkie that’s out coaching, wrestling, and all these things I was doing before,” he reflected, “then who am I?”

Eventually Salvini found other paraplegics who gave him access not only to vital tools, such as cushions that would heal the pressure sores he’d been suffering from, but to people whose experiences and stories reflected his own.

The fellowship he found in others was instrumental to the creation of the Here and Now Project, a local non-profit that connects people whose lives have been affected by paralysis. 

The following interview has been edited for clarity and length.

Luke Savot: Would you mind introducing yourself and talking a little bit about how you got into the work that you do?

Kenny Salvini: My name is Kenny Salvini, I’m a C34 quadriplegic. I broke my neck in a skiing accident up at Snoqualmie Pass, just off of I-90. 2004 doesn’t seem like that long ago, but that was kind of the dawn of social media, right? We weren’t as interconnected as we are now. I got sent home from the hospital [and] they basically said, “Good luck.”

You go home, and there’s nothing there for you. All I could see were the differences between me and everybody else. 

That all changed [in] January of 2010. I met a guy named Todd Stabelfeldt [who] had gotten a gunshot wound [that] paralyzed him in the same level as me when he was 8 years old, and I met him 25 years later. He was having a 25th anniversary [party] for his injury and I showed up at his place. There were [six] other quadriplegics. We [were] all sitting in a circle and something just clicked. Suddenly, I heard my story six different ways.

A couple years before then, I had lost someone close to me to drug addiction, [which] introduced me to the 12-step community, where they’re called a “fellowship of mutual aid.” I fell into the arms of that fellowship, and that was kind of the model. 

Suddenly I was at [meetings] and it was all about experience, strength, and hope. [Around that time,] I found a website called ihadcancer.com. At the time, it was a Google map that was searchable by age, location, diagnosis, relationship—for cancer survivors and their families. And I was like, “I want that for paralysis.” 

So that’s where the Here and Now Project came in. It was originally going to be based around technology, but I just want to find people and see what I can learn. I might have a few things to share, but that’s what we say — if you’ve been in a chair for 6 weeks or 50 years, you might have something that could change my life.

We rented a barn down in Fife in 2014 and we made a Facebook invite for it. We had 19 RSVPs, and it’s like, yeah, the paralysis crew is a flakey bunch. [Kenny laughs.] So maybe 10-11 people will come. 27 people showed, and like 40 family members. It was pretty cool. You open the doors and just let the sparks fly — there really wasn’t that much to it. 

So we’ve been doing that every year since — 2015 is when we started doing support meetings all over Western Washington. We have between 5 and 10 a month depending on the location. We’ve got Port Angeles, Sequim, Silverdale, Puyallup, Renton, Woodinville, Northgate, all over. 

There’s just no replacing that [feeling] in a meeting when you’re dumping what’s on your plate and you know that you’re not alone. So that’s where we’re at right now. I approached Green River College’s IT and web design department about finally putting the map together, but it hasn’t quite got legs [yet].

Savot: I heard technology come up in a lot of different ways. What role does technology play in connecting folks and establishing that community?

Salvini: It’s fascinating. One of my best friends that was in my wedding a year-and-a-half ago, his name is Jesse Collens and he’s a C1 quad from a mountain biking accident, on a ventilator full-time. It was at Jesse’s that one of our other founding members [told us about] switch control, which is built into the iOS platform inside of Apple. 

It started out with facial recognition, way before iPhone 10 — this is 2013 — and it would recognize your face. If you turned left, it would do one thing; if you turned right, it would do another. Buried even further, the phone would recognize Bluetooth switches. So if you could utilize any kind of Bluetooth switch, you could access the phone. Our buddy Cody [was] like, “That might work for Kenny and the high quads,” and, sure enough, that has extrapolated into the Pacific Northwest being a hub for people using the switch control. 

One of the other quads who was in my wedding, Ian Mackay, he’s been in a couple Apple commercials now with switch control and they just launched voice control, probably in the last month.

Access to smartphones is access to the world. Just the advent of switch control changed everything. Now Ian is famous for stalking us all on Find My Friends. He’s always like, “Why are you at the hospital?” And I’m like, “I’m just visiting somebody!” But yeah, it seems like we’re on the cusp of something really cool. 

Savot: That really ties into one of the biggest questions that I had in reaching out to you. I’ve witnessed technology move at such a fast pace, but still, buildings aren’t accessible. People have Siri and Google Home, and all of these things that I would imagine would make life a lot easier for folks — but is that trickling back to communities that actually need it?

Salvini: I mean, the ADA is going to be 30 years old. If you look at the civil rights movement, that was 50 years ago, but is racism gone? No. Just because we passed the first law to make things accessible, it doesn’t mean that you’re going to have blanket accessibility. It’s that Martin Luther King Jr. quote, “The moral arc of the universe is long, but it bends towards Justice.” 

I do a lot of advocating on the local and national level, and airplanes aren’t accessible. They strap you in like Hannibal Lecter in this chair, they drag you down the aisle, and it’s so dehumanizing, you know — but we don’t change until there’s a lot of pain, or financial burden, right? You don’t have a cross-section of the community big enough that it’s affecting the bottom line. So it’s cheaper to just break a few chairs, and not change. 

Todd always jokes, “Convenience for lazy people is access for paralyzed people.” If you want to sit around your house and not lift a finger [with home automation], that works well for us because now we can turn on our lights and blinds and thermostats. It’s an arc, and it’s going to take awhile to bend in the right direction.

Savot: What has all of this looked like in Seattle, or in the Pacific Northwest, with so many tech companies and with tech being such a big focus in the city? What has that looked like?

Salvini: I read [on a] Christopher Reeves website a while ago that Seattle was always voted the most accessible city. You talk to anybody in the city, and they laugh. A good friend of mine, Conrad Reynoldson, is a lawyer and he’s done a lot of push for curb cuts and all these things within town. I’ve traveled a good amount all over the country, and Washington DC has access on us in spades in there. Their metro is like the most successful thing. 

I was stuck in bed in 2008 when Obama was inaugurated, and I remember watching all these people converge on the National Mall, and that made me think of Forrest Gump when he’s around there, and I’m like, “Man, I wish there was still that kind of activism like there was in the ’60s.” Now you’re seeing it with the disabled community — that voice is getting louder and louder. I go back to DC to do a lot of lobbying, and I remember one of the last Healthcare deals, I saw a bunch of my friends getting dragged out of a senator’s office in zip ties and handcuffs because they are pushing for the same change that everybody pushed for 30 years ago. 

Savot: Do you think that having access to one another through technology and through social media helps with organizing and activism?

Salvini: I think it has. I mean, even if you look overseas, like what Twitter has done in those grassroots movements. Things can travel fast. When my wheelchair got destroyed the second time, I threw a couple posts up on social media and I woke up to like half a dozen calls from Alaska Airlines, because people pay attention.

Savot: That public pressure.

Salvini: Right! I mean, you see that with cell phone footage of shootings. There’s a lot more accountability and there’s a lot more reach, where your voice can get elevated. 

Even on a personal level with Here and Now — when I met Todd, he was living in his grandparents’ single-wide trailer on their family property. Ian was barely out of his shut-in days. Now Todd just spoke to corporate permobil wheelchairs in front of hundreds of execs. Ian’s on Apple commercials. I’m traveling the country — it’s that rising tide [that] lifts all boats. 

Getting people connected, it’s empowering. That’s all there is to it.

Savot: What are some amazing technological advances that have felt like science fiction? I mean, you have a chair that you can navigate with your head!

Salvini: Right! I’ve got a good buddy that’s got a 3D printer and he’s making all sorts of adaptive universal cuffs. I drew up a laser pointer that I redesigned because my wife was strapping laser pointers to safety glasses so I could do puzzles with her. If you can think it up, you can make it these days. 

Just having access to the phone gave Ian the opportunity to be out on the trail at his home in Port Angeles. He would go out 40 miles a day on his power chair, by himself, do sleeps on a ventilator. That kind of independence was not a possibility, because we always needed somebody within earshot. Help needed to be as far as we could yell for, and he’s extrapolated that into a whole non-profit, a whole movement. He’s built a platform and he’s helping people.

[And it’s not just] physical technology — it’s like a mental, emotional, spiritual kind of thing. Did you watch that Andrew Garfield movie, Breathe, where he had polio and he’s on a ventilator? 

Savot: No, I didn’t.

Salvini: It’s 1965, and this guy comes down with polio and he basically invents the first power wheelchair with the ventilator attached to it. That was only 50 years ago. There’s a scene in the movie where he goes into a home where they store all these people, and it’s literally iron lungs that are stacked like a filing cabinet. They’ve all got mirrors and that’s how they can see each other, and that’s it. That’s their life. They just lay there and that’s as much of the world as they see. And that was only two people ago, two generations—that’s all it was. 

I mean, my grandfather fought in World War II. He never would have been imagined his grandson sitting on a robot. [And] I travel way more now than I ever did before I got hurt!

Savot: Can you tell me a little more about Here and Now? What are you all doing now, where do you hope to go?

Salvini: Yeah, it’s a fellowship of support and our mission is to connect and empower. We’re doing a really good job of connecting right now, but the empowerment piece is missing. Whether that’s getting people back to work or back to school — everybody is so focused on physical recovery when an injury happens, and the mental, emotional, spiritual side is not covered. That’s the gap we’re trying to fill. Just, I see you. I understand. You don’t have to do this alone anymore. 

Savot: Just to tie it back to what you had spoken about before, with your experience say that this map that you all are working on, say that it had existed when you were in that years-long daze, you know.

Salvini: Would I have been into it? I don’t know. 

Because, like I said, I met a handful of people, but I never met somebody that was like, “Whoa.” I know that Ian was the one because we were so similar, we were so like-minded, we would have been pretty tight beforehand.

That big meetup that we started in that barn has expanded, and we do it down in Tukwila in September. It’s a two-day event, and the first day is all getting in circles and having meetings. The second day, we bring in like 30 tables and 7 or 8 different adaptive sports demos, and we had a guy show up. He was maybe 45 days post-injury and he was in tears, because he’s like, “I didn’t know this was out here.” So I hope I would have, but I don’t know that I would have.

Savot: Do you have dreams of Here and Now mostly being local, or do you have dreams for it to be globalized?

Salvini: You know, I’d love for it to be “the new program,” I’d love for that. But shoot, even if we’re doing it in our backyard, that’s good enough. Everybody’s got dreams that they want to change the world, but I don’t need to. If one person changes, if I can [foster] the same experience that I had at Todd’s house seven years ago [and] just spark one person, that’s the only goal.

 


 

Conversations on Tech and Social Justice: This story was made as part of The Seattle Globalist’s Fall 2019 Tech and Social Justice Fellowship, in partnership with the University of Washington’s Communication Leadership master’s program.

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