Photos by Kyle LaMere
Regardless of whether you have experienced her beaming smile in person, or heard of her work, or the organization she founded, Reveca Torres is changing the way you think about people with spinal cord injuries and disorders. An artist, storyteller and humanitarian, the Chicago-based quad is promoting an exciting new identity for the SCI/D community — one that moves beyond the dichotomy of the inspirational and the depressing to a more approachable and real depiction of what people face every day. She understands the importance of empowering people within the SCI/D community, while connecting with and educating people outside the community, and her unique approach to achieving those ends is at the heart of why she is the 2015 NEW MOBILITY Person of the Year.
Reveca Torres is too restless to sit behind a desk every day. She devotes most of her time to running Backbones, the SCI/D nonprofit she founded, out of her home in suburban Chicago, but she loves to leap into adventures, both large and small. Variety keeps Torres, 34, motivated and stimulated. “It keeps it exciting. I like trying new things, new activities. I might not always get good at them, but I like to try.”
This week it’s a group harmonica lesson at the Old Town School of Folk Music in Chicago, where I agree to meet her. The instructor is named Skip. He’s a robust and avuncular white man with a gray beard. He wears an Irish motorist cap. His black pants are hiked up high around the equator of his waist.
The five students join Skip in singing a few rounds of the blues song he is about to have them take turns playing.
How long? How long?
Has the evenin’ train been gone?
Torres sings tentatively as she stares intently at the song lyrics spread out on the music stand in front of her wheelchair. In her lap rests a small black case containing a wide array of harmonicas.
How long? How long?
Baby how long?
It’s Torres’ turn to play the tune solo. Her sound is faint and thin. She has a bit of a struggle keeping up the tempo. The song ends with everybody singing one last round. And then Skip says, “Such a gloomy song.”
Yes, but it goes well with the gloomy autumn day. Outside the window, the afternoon sky is slate gray. Golden leaves still cling to bare black tree branches. Torres looks at me after the song ends and says, “I’m out of breath.” But then Skip announces that the next song for everybody to play will be Cabaret. It’s a much faster tempo. Hang on tight!
After class Torres and I chat in the lobby of the Old Town School. She says she played much better during her round of harmonica lessons earlier in the year, but she got rusty over the summer because she didn’t keep up practicing. She says she played violin before her injury happened on the last day of 1995. As a kid, she fantasized about being in a Mariachi band. After the injury, she says, “I tried playing the violin to see if I could adapt it somehow. But you really need fingers for that. I was looking for something to play.” And then a few years back her nephew gave her a harmonica “just to mess around with,” she says. “I told him, ‘I can probably do this. And it’ll probably help my breathing, too.’”
Torres had a good excuse for not keeping up with the harmonica last summer. She was busy helping organize a Chicago version of the ReelAbilities film festival. The four days of disability-themed film screenings and panel discussions was intended to commemorate the 25th anniversary of the signing of the Americans with Disabilities Act. One of the festival sponsors was Backbones. The Backbones mission statement says it’s there “to help people with spinal cord injury or disease and their families connect with their communities … by creating events and experiences that promote awareness and engage people of all abilities.” That description could just as easily apply to Torres’ mission since she was paralyzed at the age of 13.
A Fateful Trip
New Year’s Eve, Dec. 31, 1995. Adam Torres is driving his van back to Chicago after visiting family in Guadalajara, Mexico for the holidays. He’s in a hurry to get across the U.S. border. The auto insurance he purchased to cover this trip expires at midnight.
In the front passenger seat is his son, Noe, 11. In the rear seat is his daughter, Annie, 6. Adam’s wife, Francisca, sits behind him on the middle seat along with their one-year-old son, Jacob, and Reveca, 13.
It’s raining as they travel along a desolate Mexican road. Francisca lifts Jacob out of the baby seat and onto her lap to change his diaper. A truck swerves. Adam swerves to avoid contact. His van skids off the road and tumbles down a ravine. Annie and Noe are thrown from the van. Adam climbs out of the wreckage. He says to Reveca, “Get up and help me with your brother and sister!” Reveca tries to sit up, but she can’t. It feels as if something heavy has landed on her and is pinning her down.
Adam and a man Reveca doesn’t know are climbing into the wreckage. Who is this man? How long has the family been lying in the ravine waiting for someone to notice? Reveca doesn’t know. She’s going in and out of consciousness. Time has no substance. Adam and the man hoist Reveca up in a cradle lift and pull her from the wreckage. Her neck is limp and her head falls back. She knows something is seriously wrong.
They carry her out of the ravine and slide her into a Chevy Suburban that’s parked on the side of the road. The man she doesn’t know is an American who drove by, spotted the family in the ravine, pulled over and hurriedly removed the seats from his Suburban to make room to transport all the injured family. He delivered the family to what Reveca refers to today, with an exasperated laugh, as “the shittiest clinic ever.” It was the closest place to get medical help. From there she was taken by ambulance to a “less shitty clinic,” where they screwed a crown (“halo”) into her head. Then she was airlifted to a Texas hospital where she spent three weeks stabilizing before being airlifted again to the Rehabilitation Institute of Chicago.
Reveca had injured her spinal cord at C5-6. Adam injured his shoulder. Francisca fractured her pelvis and sustained a deep gash. Noe was also severely lacerated. Annie had whiplash. Francisca held on tight to baby Jacob throughout the tumbling and hurtling and his only injury was a broken tooth.
Artist With a Mission
Watching how adeptly Torres navigates the world of wheelchairs today, it would be easy to forget that past and assume she had always used a chair. Last week she spent a lot of time taking pictures of herself “just out and about” and engaging in some of her favorite weekly activities, like producing visual art and practicing yoga. The camera was mounted to the back of her wheelchair so all the pictures show her from behind. “The idea is to show that a wheelchair is not restricting,” she says. She’ll display selected photos at an upcoming Chicago-area art exhibit called The Art of Normal, featuring the work of artists with disabilities.
The exhibit is her latest effort to raise awareness of what life in a wheelchair is really like. In 2013 she cultivated Reinventing the Wheel, a striking exhibit where she paired 21 nondisabled photographers with 21 wheelchair users to depict their everyday lives. The project grew out of her own dissatisfaction with the stock images she had to choose from when launching the Backbones website. “You end up seeing the same people in wheelchairs over and over and often doing the same things,” she says. “I wanted to have new people representing different experiences all over the country.”
The exhibit started in Chicago and has toured around the country. It is now available online. “It’s been really, really well received,” says Torres. “It’s been nice to hear what people say about it and how it changed the way they view disability.” (See some of the images here.)
With Confidence Comes Purpose
After her injury, Torres didn’t return home from RIC until April. She was the third of six children in a Spanish-speaking household. Her father always said, “English is for school. Spanish is for home.” Being 13 is crazed and jumbled up enough without piling on the tumult of jumping back into life with a spinal cord injury. Still, Torres graduated from middle school on schedule a few weeks later thanks to assistance from a tutor during rehab.
As she looks back on that time today, Torres says the key word that repeatedly comes to mind is connection. Connecting with the disability community was of indispensable importance for her recovery. Connecting with and getting to know other people in her situation helped motivate her and give her hope. She started Backbones because she wants to hasten those connections for others.
As a teenager, sometimes hope came from a connection with a supportive professional. Before her injury, her strongest ambition was to be a fashion designer. She timidly shared that dream one day with her high school home economics teacher. “But that’s not gonna happen,” she told the teacher. “I can’t sew.” Sewing machines weren’t very accessible for people who couldn’t use their feet or fingers. “I was all pouty. And she said, ‘Yes you can. Come to my office tomorrow on your lunch.’” The teacher showed her a high tech sewing machine where everything was controlled by pushing buttons that were easily accessible. “I was amazed! I was like, ‘Oh my God! I can sew!’ I ended up not going to lunch for the rest of high school. I would go to her classroom and take my lunch and sew and make things.”
After high school, Torres took a leap. She enrolled in the fashion design program at Harper College in suburban Chicago. And then she took another leap when she entered the prestigious Fashion Group International Costume Design Competition. Her entry, which she made herself with some physical assistance, was a Victorian dress with all the undergarments, including a corset. She was a finalist.
Even after becoming the first student in a wheelchair to complete the program at Harper, Torres still had doubts about herself. She’d never lived away from home. Only family members had done her personal care. It was time for yet another leap. In 2002, she signed up to travel to England on an exchange program with Mobility International USA. Rather than bring her own assistant, she opted to work with whatever assistants Mobility International could arrange for her abroad.
That adventure gave her the confidence to go further. Immediately after her return she applied to the University of Arizona. In 2004 she obtained a bachelor’s degree in theater arts, with an emphasis in costume design.
The next trip Torres took with Mobility International was to a Costa Rican rain forest in 2006. This time she was a group leader. All this and more taught her that the deepest connections are made with peers. “I didn’t have peer support after my injury. Not until much later,” she says. As a teen, Torres had good family support. While she was in rehab, her father and older brother, Adam Jr., adapted the family ranch house to make it accessible, or at least accessible-ish. It was accessible enough for Torres anyway. But there’s nothing like peer support. It’s great to be able to talk shop sometimes. And the more disabled folks she met as she got older, the more she heard painfully familiar stories about lack of peer support. “I kept seeing it over and over again. People were going into rehab and coming out after three weeks. What possibly can you learn in three weeks? People were asking me about things I learned in rehab, like about things like bowel programs, that you think they would’ve learned.”
Backbones Comes Together
It took Torres a while to officially pull the trigger on starting Backbones. She almost didn’t do it. “I thought about it many times before I actually decided to do it. My background was in art and I dedicated a lot of time to art.” A series of internships with a variety of nonprofits helped her build the skills and confidence to finally take the plunge. She taught herself how to prepare the Backbones tax-exempt, nonprofit application to submit to the state. “I was ready to submit it and it sat on my desk for weeks. I asked myself, ‘Are you ready to do this? Are you really, really ready to do this?’ I felt like if I didn’t have time to be creative, I would lose my creativity. So I went to a teacher who eventually just became my friend. I was in tears and I said, ‘I don’t know if I want to do this!’ She goes, ‘You’re a creative person. Whatever you do in your life, you’ll bring creativity to it. You will be OK.’ And I submitted it.”
Not content simply to launch Backbones, Torres focused on ways to keep growing and improving the organization. She moved to Portland, Ore., and completed a certificate program in nonprofit management and interned with Mercy Corps Northwest. Executive Director John Haines, a quadriplegic himself, remembers her stay fondly. “From the start she was exceptional. She was a step above in terms of motivation, and she had an ability to absorb information on sight.”
On top of her dedication and obvious work savvy, Haines says Torres’ personality is what separates her from her peers. “Whether she is in a chair or not, she is somebody that people want to be involved with. She has built a wider cadre of supporters and colleagues that benefit from her work,” he says.
She designed Backbones to provide the kind of support and opportunities she finds interesting. Another thing she found missing in the transitional years after her accident were social interaction opportunities besides wheelchair sports. So Backbones organizes events that facilitate face-to-face connections. It could be the ReelAbilities film festival or maybe spending a summer afternoon at a Chicago Fire soccer game. Or it could also be a wine tasting in Sacramento, Calif., or a yoga class in Portland, Ore.
While Torres initially worried that her background in the arts had not prepared her to run a nonprofit, she found the opposite to be true. “Doing stuff with theater and the arts, you work with directors and actors and costumers and stage people — all these people have to come together to create this amazing production. Everyone comes to the table with a certain skill. A lot of that transfers over into Backbones. That’s one of my favorite parts, seeing what people bring to the table, whether it’s volunteers or collaborations with other organizations, just seeing how it all comes together and kind of leaving it open to become what it becomes instead of trying to guide it all the time.”
That freedom leads to many of Backbones’ most important connections being made online between people who never meet. Mona Pinon of Grants Pass, Ore., connected with Torres after her son, Isaac, was paralyzed by a tumor. “I needed help building a wheelchair accessible playground at my son’s school,” she says. “Reveca connected me with different people in the spinal cord injury community to help me spread the word on the need for accessible playgrounds.” Shortly thereafter Pinon helped organize the Blue Slide Project, which raised $150,000 to build an all-inclusive playground in her hometown.
Torres says in 2014 Backbones connected over 100 people with mentors and fellow travelers through the disability experience. She begins making connections by attempting to talk to everyone seeking Backbones’ help personally, either by phone or email. She is currently working on developing an app for mobile devices that would facilitate the connection process. She wants to keep growing Backbones to more cities and is looking to find ambassadors to help her do that.
“I’m trying really hard with the things that I do to change a lot of perceptions and make people see that disability isn’t something that should be hidden or pitied or that needs to necessarily always be cured,” she says. Her mere presence as a young, disabled woman of color as the head and founder of a nonprofit for people with disabilities shakes up perceptions. “There have been times when I haven’t been taken seriously. There have been times when I’ve tried to get meetings with certain people and I don’t necessarily get noticed. But then I have a board member do it who’s a white male and he gets attention right away. It’s like, ‘Hmmm.’”
Torres says, “There isn’t a lot of representation of people who look like me in the leadership of the disability community. But I think it’s getting better.”
Haines says it would be unwise to underestimate Torres just because she does not fit the traditional profile. “She is remarkably upbeat all the time and has this amazing smile, but she is persistent and strong and she is no pushover,” he says. “When she has an impulse or an idea, she implements it.”
But still, here’s one of the most frequently asked questions Torres gets about Backbones: “Why is your logo a female?” The logo is a variation of something Torres drew in her sketchbook one day when she was riffing on the idea of feminizing the access symbol. The Backbones logo also faces left. The access symbol faces right.
“I feel like I have to do a lot of defending. ‘She has boobs!’ Yes, she does. She’s a woman.”
But why is the Backbones logo a woman?
“Because I thought it was time,” she says.
For the Reinventing the Wheel traveling art exhibit, Reveca Torres paired 21 nondisabled photographers with 21 wheelchair users going about their daily
lives. Done in partnership with the National Museum of Health and Medicine Chicago, the exhibit has toured the nation and can be seen in its entirety at
vmuseum.com/rtw. To bring Reinventing the Wheel to a gallery or venue near you, contact Backbones, email@example.com.