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Friendlier Skies Ahead?

On July 8, the Department of Transportation rolled Meanwhile, Touching Down at Minneapolis-St. Paul out the Airline Passengers with Disabilities Bill of Rights — the International Airport: first bill of rights for travelers with disabilities. Truthfully, the While we can hope the Airline Passengers with Disabilities document contains Bill of Rights leads to safer airways, the Minneapolis-St. Paul no protections not International Airport is thinking bigger … much bigger. In colpreviously outlined laboration with Delta Air Lines, the airport built a 33-foot Boeing in the Air Carrier 737 cabin intended to help people with disabilities and other Access Act, a federal flying-related issues get used to the boarding experience in a disability law, but it’s realistic but relaxed setting. not old hat. The Bill The mockup features rows of standard coach seats and a of Rights spells out bathroom (non-working) in addition to a gentle ramp where the passengers’ rights in a tail and wings would be. This first-of-its-kind creation is part of user-friendly 10-point the airport’s Navigating MSP program, which includes practice format, including the with using ground transportation, getting through security, and right to be treated with dignity and respect, the right to acces- getting in and out of plane seats. sible airports and aircraft features, and the right to assistance at The mock cabin isn’t solely for flyers. Airline personnel, flight airports and on aircraft. crews, first responders and companies that provide accessibility

Knowledge is power, according to John Morris, who shares services to passengers also use the cabin for training. Prospect his own experience from more than 900 flights at wheel- Airport Services, which provides wheelchair attendants and chairtravel.org: “Few disabled travelers fully understand the other services at airports across the country, now runs weekly rights and protections they are guaranteed ... and this docu- staff-training sessions in the mock cabin. ment could improve passengers’ understanding of those An airport official said that airports in Houston, Denver and rights.” Knowing accessibility laws allows consumers to assert Kansas City, Missouri, have reached out for information. The their rights over the whims of aircraft carriers, which operate mock cabin and Navigating MSP are free to visit, but only by under limited enforcement by the DOT. Ideally, he says, appointment. Schedule at mspairport.com/navigating. savvy flyers could create more pressure for the industry to improve. “I am hopeful that a more informed population of disabled travelers will encourage the DOT to act.”

There’s no doubt action is needed. The Washington Post reported that since late 2018, major airlines have lost or damaged more than 15,000 wheelchairs. Morris has lost four wheelchairs this way. Even Sen. Tammy Duckworth reports having multiple damaged chairs.

You can print out your own bill of rights to carry with you at transportation.gov/airconsumer/disabilitybillofrights. A mock cabin allows passengers and crew to practice boarding at MSP airport.

REID DAVENPORT’S FEATURE DOCUMENTARY DEBUT, I DIDN’T SEE YOU THERE, HAS BEEN RACKING UP THE ACCOLADES SINCE IT DEBUTED AT THE SUNDANCE FILM FESTIVAL IN 2022. IT WON THE DIRECTING AWARD FOR U.S. DOCUMENTARY AT SUNDANCE, THE GRAND JURY AWARD AT THE FULL FRAME FILM FESTIVAL AND THE GGA MCBAINE BAY AREA DOCUMENTARY AWARD AT THE SFFILM FESTIVAL. DAVENPORT, WHO HAS CEREBRAL PALSY, SHOT THE FILM FROM HIS WHEELCHAIR, EXPLORING THE CIRCUS LEGACY OF THE “FREAK SHOW” AND THE ABLEISM THAT HE CONFRONTS ON A DAY-TO-DAY BASIS. FIND OUT MORE AT IDIDNTSEEYOUTHEREFILM.COM.

There’s always the kid who will tie a blanket around his neck and jump off the highest place they can find. Mario Bonfonte Jr. was definitely that kid. “I’ve always pushed the limits in anything I’ve ever done,” says the C4-6 quad.

As a 17-year-old, his life changed dramatically when he sustained a spinal cord injury riding BMX in 2006, but he wasn’t done pushing. In fact, after years of adjustment, he upped his game. He taught himself SolidWorks, a 3D CAD program, to design a custom set of driving controls. His stepfather and friends fitted them into a BMW M3. Bonfonte was ready for auto racing.

Reactions were predictable, and certainly understandable. “They’re looking at me like I’m crazy ... You can’t hold a pencil, you can’t shake my hand. How are you going to hold onto a steering wheel?” he says. But Bonfonte is relentless. “I’ve figured out my own way to do pretty much everything in life.”

His professional racing and his gripping story are featured in the short film Daredevil Racer, by Freethink Media. Watch at tinyurl.com/rt8anf6h and follow him on Instagram @mariobonfonte_37.

Handrims, Au Natural

For anyone who wants to add a natural touch to their wheelchair, you can now get high-performance handrims made from wood. Austrian manufacturer Lignorim uses lightweight ash wood to make handrims in a variety of sizes, styles and colors, all of which are designed to be nonreactive to water and to not splinter no matter what you put them through. Lignorim says wood handrims won’t get nearly as cold in the winter or as blazing hot in the summer as metal ones. Plus, when you squeeze through a tight door frame or accidentally grind them against a curb, you can refurbish the wood rims with a little sandpaper and oil. To learn more about these one-of-a-kind handrims, visit lignorim.com. They are available for purchase in the U.S. starting at $500 a pair from vaporwheels.com

LISTEN

Bonfonte shows off his 3D-printed hand controls.

ACCLAIMED ACTOR AND NM COLUMNIST REGAN LINTON NARRATES THE BREAKUP ARTIST, A NEW AUDIBLE ROMANCE COMEDY FROM WORLD-CHAMPION PARA-POLE ATHLETE ERIN CLARK AND AUTHOR/PODCASTER LAURA LOVELY. LINTON BRINGS THE FEISTY INDEPENDENCE OF ZELDA REYNOLDS — THE BREAKUP ARTIST — TO LIFE AND KEEPS THE ACTION MOVING. LISTEN ONLY ON AUDIBLE AT AUDIBLE. COM/PD/THE-BREAK-UP-ARTIST-AUDIOBOOK/B09ZVQDG9V.

UNITED SPINAL

Member Michele Lee Shares her ROCH Experience

More than 100 advocates from across the nation attended United Spinal’s 10th annual Roll on Capitol Hill in June to meet with their Congressional representatives on key issues affecting wheelchair users and others with SCI/D.

Member Michele Lee, a C56 quad, met with Illinois Senator Tammy Duckworth, who she named as one of her personal heroes. Duckworth is a double amputee, so she understands the needs of the disability community firsthand. “Tammy Duckworth is informed,” says Lee. “She knows her stuff. She gets all of the issues wheelchair users face, and we’re on the same page. It was so refreshing to be in that room.” Duckworth also happened to be with TSA Administrator David Pekoske just before meeting with United Spinal advocates. “She actually brought him into our meeting and said, ‘This is United Spinal Association — they’re here to advocate for the Air Carrier Access Act and airline accessibility.’ And he was very interested in what we were trying to do and welcomed feedback from the disability community,” Lee says. Sen. Tammy Duckworth, left, meets with Pekoske encouraged the United Spinal member Michele Lee, right. advocates to document and report any issues they have about the TSA experience because he was not aware of how the current process impacts travelers with disabilities.

“Chair users are worried about every other step of the way like bathroom access, wheelchair damage — we’re busy with the other things,” Lee says. “TSA is an important component, and we should definitely turn our eyes that way as well. Especially when the director is eager to hear our feedback.”

While conversations with Duckworth and Pekoske indicate progress, the fight for accessibility is far from over. “We can’t lose momentum,” urges Lee. “If leaders are willing to hear us, we have to keep raising our voices and keep being heard because otherwise, we’re not going to see change.”

Celebrating Disability Pride Month

United Spinal members recently took to social media to share the importance of Disability Pride Month. Celebrated each July, it aims to break down stigma around disability, celebrate the history of the disability rights movement and honor contributions the disability community has made to society. “The disability experience is not a onestoryfitsall situation,” says United Spinal member Ashley Llorens. Ashley and her twin sister, Nikki, were both paralyzed in the same car accident, leaving Ashley a quadriplegic and Nikki a paraplegic. “So many people have such a limited view on disability,” says Ashley. “This month aims to break that stigma.”

“It’s a time to see how beautiful the disability experience can be,” she adds. “Are there challenges? Yes! And it’s a time to see those challenges as well! The disability experience is a human experience filled with both joy and sadness, beautiful moments and moments of struggle.”

Meet New United Spinal Members Michelle Moore and Granddaughter Amyah

Ages 55 and 9 from Roundup, Montana SCI, T11T12 Complete

Why did you join United Spinal? My 9yearold granddaughter, Amyah, was injured in a motor vehicle accident and is now paralyzed. What is the one disability-related product you couldn’t live without? Amyah says she cannot live without her catheters because they “keep me from having my bladder explode!” If you could change one thing in the world to improve quality of life for wheelchair users, what would it be? Amyah says she’d love to “put a rocket launcher on my chair so I can keep up with my classmates at school and not get left behind.” She’d also wants a better vehicle or way to get into a truck “without my gramma lifting me cuz she’s old.”

Join a Virtual Support Group

United Spinal Association offers virtual support and resource groups on various topics. Additionally, an uptodate events calendar includes peer groups and social gatherings offered by chapters and hospital members. Something is happening every day, so check in often at unitedspinal.org/virtualsupportgroups. Here are just a few of the offerings: Resource Center Live: Join the Community Supports team to have your questions answered about health and wellness, new spinal cord injury, financial assistance, traveling, sports and recreation, and more! TechTalks: Collaborate and share about accessible technology with other wheelchair users. Pathways to Employment: This resource group meets to share resources, brainstorm solutions and encourage you in your journey to employment. Advocacy Live: Collaborate with fellow advocates. Rolling With Pride: All disabled members of the LGBTQIA+ community and their allies are welcome to attend this support group. United Spinal Social Hour (Day): A weekly social hour that meets every Thursday at 1 p.m. Eastern time. United Spinal Social Hour (Night): A weekly social hour that meets every Thursday at 8 p.m. Eastern time.

Meet Erin Gildner, the New Director of Chapter Relations for United Spinal

Erin Gildner is beyond excited to work with United Spinal Association’s chapter network. That’s a good thing since she’s the organization’s new Director of Chapter Relations. “I am a natural connector and love helping people, so I feel this role is a perfect fit for me,” says Gildner, who lives with her husband, Ryan, and their two sons, Hagen and Koen, in Little Rock, Arkansas.

Another reason this role is perfect for Gildner, a T11-12 para, is her experience co-founding United’s Arkansas chapter. “I understand how intimidating and scary it can be when you are just starting out,” she says. It’s tough to keep that chapter running when your budget is small and your staff members are volunteers. “The ups and downs I’ve experienced give me a unique insight into what our chapters go through.”

Gildner adores her state. “Arkansas is beautiful — that’s why it’s the ‘natural state’ — and has a lot to offer,” she says. “We have many amenities bigger states offer, but without the grueling traffic jams or the feeling that you are always bumping into people and living on top of your neighbors.”

Much of Arkansas is rural, so Gildner understands the challenges faced by wheelchair users living far from the city lights. “There is limited or no access to employment, transportation, broadband internet, technology — especially assistive technology — complex medical and rehab equipment, and quality healthcare. This is where United Spinal can help.” She relishes collaborating with other United programs, especially Pathways to Employment, which strives to put paychecks in members’ pockets. “Also, our policy and advocacy teams, and our Tech Access Initiative are addressing these access issues, which in turn will help rural chapters improve their communities,” she says.

Gildner is laying down plans to strengthen all United Spinal chapters, from big-city to suburban to nestled-in-acountry-valley-somewhere. “I truly believe that good things come from collaboration and teamwork, so I’d like to work closely with chapter leaders, regional chapter coordinators, and other United Spinal programs and staff to build and strengthen our chapter network,” she says. Her process is twofold: provide new chapters the tools they need to begin their United Spinal journey and resource existing chapters to grow and strengthen. She recognizes that all United Spinal’s programs function together to improve chapter members’ everyday lives holistically — and by extension, the lives of all Americans with disabilities.

Gildner

HOW WE ROLL

TECH COMPANY COFOUNDER Gene Murphy

After years of battling tumors on his spinal cord, Gene Murphy wasn’t sure what to expect when he became paralyzed in 2012. He never expected he would find a new cause and community he loved.

Riding the Internet to Success

As a businessman, Murphy, 59, made a habit of getting in on the ground floor of lucrative opportunities and riding the elevator to the top. In the 1980s he was selling Apple computers to schools, and wiring networks with a high school friend. He remembers telling his friend, “Everybody’s going to have to cable their building. They don’t have a choice; they’re going to have to do this. Our boss is getting the majority of the money, so why don’t we do it [for ourselves]?”

In 1995, the two friends started a technology-networking business called ProMedia in his friend’s basement. The printer was on the washing machine and the phone was on the dryer. They relied on contacts they’d developed in their previous companies. “We designed and installed the infrastructure — the computers, the wireless, the phone systems, the security systems — and we ran all the cable and put all the electronics in,” says Murphy.

At the same time that he was trying to get his start-up off the ground, he was diagnosed with tumors wrapped around his spinal cord at T10 and T12. Every few years he’d go in for another surgery and take steroids so that the tumors would subside and allow him to regain his mobility, only to grow back a few months later and render him at least partially paralyzed.

That rollercoaster ended in 2012 when he became fully paralyzed from the waist down once and for all. “I was done with all the steroids and all the surgeries and just thought, ‘Enough is enough, I’m just going to live my life now,’” says Murphy.

ProMedia was successful enough that Murphy and his friend were eventually able to sell it to a large Australian technology conglomerate in 2015. The sale gave Murphy the flexibility to live the way he wanted. Since becoming paralyzed, he has embraced the SCI community and used his business experience, influence and expertise to give back. “When I first became paralyzed, I stopped doing a lot of things in my life like flying to places, because I didn’t want to have to deal with the complications,” says Murphy. He found a welcoming refuge at Push to Walk, a nonprofit organization in Oakland, New Jersey. Push to Walk is an abilities-based gym specifically geared towards providing customized exercise programs for individuals

CAN’T LIVE WITHOUT? My Amigo scooter and my BraunAbility accessible van — because they give me the freedom to go anywhere I want. HAS YOUR DISABILITY CHANGED HOW YOU PARENT? I didn’t let it hold me back. I got involved in every aspect of their lives. I was very active in both my children’s lives, and I still am today in their adult lives.

with paralysis and other mobility issues. “When I went to Push to Walk, it was like ‘Cheers’ – everybody knew my name.”

Being there gave Murphy an opportunity to compare notes with other wheelchair users on how best to do the regular tasks associated with living with a disability. “I just loved going there, and they helped me so much physically and emotionally,” says Murphy.

He eventually joined the Push to Walk board and has fully embraced his role as a fundraiser and vocal advocate for the organization. He has enjoyed connecting with other organizations, such as United Spinal Association and the Christopher & Dana Reeve Foundation, getting involved in peer mentoring with newly injured people. “I went through some dark years focusing on what I couldn’t do, but after a while it clicked for me,” he says. “What I now try is to get through to people as a mentor: ‘Yeah, I get it. This isn’t fun, but don’t let it ruin your life. You still have so much to give and so much to accomplish.’ How you deal with it is a choice, and I make the case to choose to live life to the fullest.”

RECREATION THAT NO ONE WOULD EXPECT? I surf with Operation Beachhead on the Jersey Shore, by bodysurfing on a surfboard with grab handles.

Don’t Complain, Share Your Lane

Gene Murphy talks about how his SCI gives him a new appreciation for the little things in life.

I appreciate everything, whether I’m out at a show with friends or hanging out with my family. Sometimes I look at nondisabled people who seemingly have everything going for them, and I don’t see the same attitude. For example, I go “ swimming at this beautiful gym with two pools, and there must be eight lanes per pool. Yet, when it gets crowded, so many people don’t want to share their lane with somebody else. They’ll make believe they don’t see them when they get in the pool, or they’ll complain: ‘I can’t believe

I had to share my lane today. This is crazy.’ Meanwhile, I’m in complete amazement, like, ‘My God, you know how lucky you are? You’re here, you’re in a nice place with a beautiful gym, swimming in a pool and you’re complaining you have to share your lane with somebody?’ I’m telling people, ‘If you ever see me, you can jump right in my lane.’“ WHY DID YOU JOIN UNITED SPINAL? I joined United Spinal to open myself up to the resources they have. One of the biggest things that truly helped me was New Mobility.