New Mobility Magazine Sept-Oct 2022

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For more information on how you can support United Spinal and become a corporate member, please contact Megan Chintalla at mchintalla@unitedspinal.org or 718/803-3782, ext. 7253. Acknowledgements on our website, in New Mobility, in United Spinal e-news or any other United Spinal publication should not be considered as endorsements of any product or service.

BULLY PULPIT

By Ian Ruder

NEW MOBILITY IS THE BIMONTHLY MAGAZINE OF UNITED SPINAL ASSOCIATION

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MY COMPLICATED RELATIONSHIP WITH MY BODY

I don’t love my body.

To be clear, I’m not talking about how I feel about how hot (or not) I am, but about my physical body — the actual tissue and organs and gooey stuff that makes me go.

Problem after problem and surgery after surgery have forced me to accept that any love that I once had for my body is long gone. Our relationship is broken. The intuitive back and forth we used to enjoy has been replaced by a confusing (and often overwhelming) interface of bags, pouches, dressings, tubes and more. They allow us to converse, but re-enforce our growing distance.

For a while, I held onto the notion that with the right blend of proactive diligence and medical/holistic savvy, I might stumble upon some sort of magical solution — a little bottle that says “Drink Me” and restores my love for my physical body.

Alas, this isn’t Wonderland.

Instead of being lost down a rabbit hole, my body and I fight like mismatched detectives on a weekly crime show. We bicker our way to small victories every week, but the real villain always stays in the shadows.

Whether its hemorrhoids, dysreflexia, sleep apnea or the malady du jour, I’ve learned to do enough to keep my body running, but rarely at peak speed and performance.

I tried to love my body, and there were times where I came close. I’m glad I did it. I learned to interpret its physical signals and work with it if possible to make things better. When things were good, we made a pretty decent team, but I’d be foolish to ignore the overwhelming signs that tell me this phase is over.

There’s a part of me that feels guilty

for owning up to my true feelings about my body. Whether as a result of my own insecurities, societal pressure, or some combination of the two, I’ve long felt a great deal of pressure to profess my love for my body. I worry that in some way I’m affirming the sinister ableist narrative that all of our disabled bodies are broken, ugly and unlovable — but I’m not.

24 years as a wheelchair user and 11 years with New Mobility have convinced me that body love does not discriminate along ability lines. I know plenty of disabled people who love their bodies with a passion, just as I know plenty of nondisabled folk who don’t love their bodies. What I am doing is being honest with myself, that my body is not in a great place.

A couple of columns ago, I wrapped up my Bully Pulpit looking into an uncertain future and ready to embrace something new. I was on the mend from a colostomy that seemed to offer the best hope for a truce and possibly even some healing between me and my body. At the time, I thought I’d found my way out of the rabbit hole. A few months and another unexpected surgery later, the future looks more uncertain than ever.

For a long time now, I’ve been living a lie — feigning a love that wasn’t real. I hoped my positivity would lead to improvement. I’m done with that.

Instead, I’m embracing the sometimesugly reality and accepting that the only certainty my body and I can look forward to is more uncertainty. We made it this far together and we’re not giving up yet. Each dalliance with hope has left me more skeptical of making lasting progress, but my direction remains unaltered: forward.

BEHIND THE STORIES

With Ian Ruder

Hilary Muehlberger is a committed SCI advocate, former Ms. Wheelchair America and the newest member of our New Mobility team. She joins us as an administrative assistant, but a better title might be Jill of all trades. She is already having an impact in a number of areas and played a big role in the Roll on Capitol Hill coverage in this issue. She credits adaptive tennis with showing her how vibrant the disability community is and how critical the need for advocacy is. We’re thrilled her journey led her to United Spinal and NM. “Being able to work for and with an organization that supports the advocacy I feel passionate about was the main reason I came here,” she says.

Talking with wheelchair users about their exercise habits for this issue’s feature reminded Jessica Farthing how complicated staying fit in the post-COVID era can be. Farthing and her husband, Paul, a wheelchair user, have struggled to find the right balance of managing their business, exercising and enjoying life. “During COVID we worked out at home and ran our business the whole time,” she says, “but as things have opened back up, it has been nuts.” She says they are looking for ways to spend time out together “that aren’t eating out.” When times are stressful, she adds, “having a healthy routine is something you can count on.”

As she writes in her feature on colostomies, Jenny Smith considered the procedure herself before settling on a Kock pouch ileostomy. Her experience has given her a unique perspective and imbues her story with valuable insights. “With any procedure like this, there are going to be positives and negatives,” she says. “If you are having problems and considering a surgical option, talk to multiple people who have had it — with good and bad experiences ideally — and listen to what they have to say.” If you decide to have surgery, Smith suggests giving yourself time to adjust. “A few years later I can see the benefits that I couldn’t before.”

Please send queries, manuscripts or feedback to Ian Ruder: iruder@unitedspinal.org

United Spinal’s Resource Center provides information on any aspect of living with SCI/D. Contact: 800/962-9629; unitedspinal.org/ask-us; 120-34 Queens Blvd, Suite 320, Kew Gardens, NY 11415.

COLUMNISTS

MAT BARTON • AARON BROVERMAN

SHERI DENKENSOHN-TROTT

MIKE FRANZ • REGAN LINTON

TEAL SHERER • JENNY SMITH

REVECA TORRES • KARY WRIGHT

CONTRIBUTORS

KIM ANDERSON • JOSH BASILE

LAWRENCE CARTER-LONG

RORY COOPER • DEBORAH DAVIS

JENNIFER FRENCH • ALEX GHENIS

RICHARD HOLICKY • GARY KARP

PAULA LARSON • CORY LEE LILLY LONGSHORE

KATE MATELAN • BEN MATTLIN

BROOK MCCALL • ASHLEY LYN OLSON

KENNY SALVINI • ERIC STAMPFLI

MITCH TEPPER • KIRK WILLIAMS LOREN WORTHINGTON WEB PARTNERS

BACKBONES

CURB FREE WITH CORY LEE ROLLIN’ RNS ROOTED IN RIGHTS

SPINALPEDIA SPIN THE GLOBE WHEELCHAIR TRAVELING

FEATURED WEB PARTNER: Spin the Globe is an award-winning travel blog and site for accessible trip planning and disability resources. spintheglobe.net

UNITED SPINAL BOARD OF DIRECTORS: unitedspinal.org/our-story

SHARE

“I’m convinced that all wheelchair users have to be reinventors.”

JULY/AUGUST 2022

Clothing Hacks

We’re all Hackers: Great column and kudos to all of the spotlights! I’m convinced that all wheelchair users have to be reinventors if we want clothing that meets our medical needs. I’m a clothing hacker. I am a C4 quadriplegic and cannot empty my urostomy bag so I connect it to a bedside bag that I put in a lower pouch of my backpack. I cover the tubing with black tape so it looks like a wire and I put a slit in the right side of my pants to connect my small bag to my large bag. I also have a colostomy, so I buy pants two sizes bigger so they don’t pinch the bag. I know what styles don’t look baggy. #wheelchairlife #adaptiveclothing #wheelchairfashion @happyonwheels Instagram

The Lowdown on Lauren ‘Lolo’ Spencer

More Lolo: I really like this show, and when I saw her character I was happy to see us represented. But I was disappointed because she had NO main storyline, and was given sparse appearances. I even tweeted at HBO to point out that disabled people have sex, partners and interests. And that I was disappointed in the lack of representation. I hope in the next season they give her character better stories and scenes. I would really like to see more of [Lolo] and get to know her character. As a talented actress she deserves better. The disabled community deserves better.

Wheeliegirl1962   Newmobility.com

The School Bus Hack

Substance/Style: Smart move on getting the rear-engine unit. Those are MUCH more pleasurable to drive. And rare for a 31-footer, too. Your bus is far more appealing and practical than any of the #skoolie pageantry found on IG. I took the same approach with my crusty old Sprinter van. All function. NO flare.

Seth Arseneau Newmobility.com

Desperately Seeking Caregivers

Robots! The caregiving crisis is worse than I’ve seen since my injury in 1993. I need a robot PCA please!

Tiffiny Carlson Facebook

Scary Times: Same here. Very frustrating. Travel plans canceled. Looming concerns with the quality of facility care, lack of knowledge and skill. Scary.

Carla F. Steinbuchel Newmobility.com

WHILL C2: Affordable Power and Portability for Some

Pros and Cons: It looks like a promising product for some people, but I was a little disappointed to see that the chair doesn’t have more range or speed comparable to my Permobill M3. It’s very cool to see that this chair utilizes a lithium ion battery, and I wish the other manufacturers would do so.

Rob Gibbs Newmobility.com

WEB-FIRST CONTENT

Best Of: Contento Brings Inclusivity to Fine Dining

More than Content: Great story — I’ve been to Contento so I can testify to how exceptional it is — and beautifully written. So, kudos to New Mobility, too.

Stephen Feldman Facebook

Ian Mackay Blows Away Power Wheelchair 24-Hour Distance Record

Record Dreaming: I guess yeah, the hardest part would be to stay awake. We need cruise control on our wheelchairs if we are going to drive for 24 hours. After my bedsore heals, I think I will give it a go. Who knows, maybe Ian and I can do the next one together? Great job, Ian.

Mark I NewMobility.com

Ending Violence Against Women With Disabilities

Terrifying: It’s frightening how unresponsive every authority is when we as women with disabilities express fears or concerns about violence and abuse. I’ve been in a situation for some time and have had very little assurance from domestic violence centers, the police, a judge, etc.

Nikki Reese @MaxSwtLdy Twitter

POSTS

Friendlier Skies Ahead?

On July 8, the Department of Transportation rolled out the Airline Passengers with Disabilities Bill of Rights — the first bill of rights for travelers with disabilities. Truthfully, the document contains no protections not previously outlined in the Air Carrier Access Act, a federal disability law, but it’s not old hat. The Bill of Rights spells out passengers’ rights in a user-friendly 10-point format, including the right to be treated with dignity and respect, the right to accessible airports and aircraft features, and the right to assistance at airports and on aircraft.

Knowledge is power, according to John Morris, who shares his own experience from more than 900 flights at wheelchairtravel.org: “Few disabled travelers fully understand the rights and protections they are guaranteed ... and this document could improve passengers’ understanding of those rights.” Knowing accessibility laws allows consumers to assert their rights over the whims of aircraft carriers, which operate under limited enforcement by the DOT. Ideally, he says, 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.

Meanwhile, Touching Down at Minneapolis-St. Paul International Airport: While we can hope the Airline Passengers with Disabilities Bill of Rights leads to safer airways, the Minneapolis-St. Paul International Airport is thinking bigger … much bigger. In collaboration with Delta Air Lines, the airport built a 33-foot Boeing 737 cabin intended to help people with disabilities and other flying-related issues get used to the boarding experience in a realistic but relaxed setting.

The mockup features rows of standard coach seats and a bathroom (non-working) in addition to a gentle ramp where the tail and wings would be. This first-of-its-kind creation is part of the airport’s Navigating MSP program, which includes practice with using ground transportation, getting through security, and getting in and out of plane seats.

The mock cabin isn’t solely for flyers. Airline personnel, flight crews, first responders and companies that provide accessibility services to passengers also use the cabin for training. Prospect Airport Services, which provides wheelchair attendants and other services at airports across the country, now runs weekly staff-training sessions in the mock cabin.

An airport official said that airports in Houston, Denver and Kansas City, Missouri, have reached out for information. The mock cabin and Navigating MSP are free to visit, but only by appointment. Schedule at mspairport.com/navigating.

A mock cabin allows passengers and crew to practice boarding at MSP airport.

The Need for Speed

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.

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

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.

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.

Bonfonte shows off his 3D-printed hand controls.

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.

Pekoske encouraged the 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.”

Sen. Tammy Duckworth, left, meets with United Spinal member Michele Lee, right.

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

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

CAN’T LIVE WITHOUT? My Amigo scooter and my BraunAbility accessible van — because they give me the freedom to go anywhere I want.

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

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.

Don’t Complain, Share Your Lane

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.”

“ “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?

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

RECREATION

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.

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

ROLL RETURNS TO THE HILL

BY GABRIELA ISABEL PHOTOGRAPHY

In June, more than 100 advocates from 29 states and the District of Columbia attended United Spinal Association’s 10th annual Roll on Capitol Hill. After canceling the event in 2020 and hosting a fully virtual event last year due to COVID, leaders were delighted to see wheelchair users rolling through the halls of Congress again, completing more than 150 visits to lobby for the SCI/D community. “It was so nice to reconnect with everyone and see our United Spinal family in person again after three long years,” says Alexandra Bennewith, vice president, government relations at United Spinal.

“Roll on Capitol Hill exemplifies our passion for the empowerment and advancement of people with disabilities. Everyone who has gathered with us — from member advocates to dedicated partners — shares a vision of a future where people with disabilities can live independently and pursue their dreams. And that vision begins here in Washington, as we ensure future generations of wheelchair users have a seat at the table when policies are created that impact our lives,” says Vincenzo Piscopo, president and CEO of United Spinal.

This year, the event highlighted these important issues:

• Supporting more funding for SCI Model Systems to ensure that newly injured individuals receive necessary healthcare and services.

• Ensuring passage of the Air Carrier Access Amendments Act and advocating for other protections for travelers with disabilities.

• Emphasizing the importance of personal care services to pursuing economic independence and mobility, including elimination of subminimum wages for people with disabilities.

• Advocating for Department of Veterans Affairs funding of automobile grants for disabled veterans, that are necessary for community living.

• Action on outdated and restrictive federal regulations that prevent wheelchair users from having access to the wheelchair that’s right for them.

For updates, subscribe to the United Spinal advocacy newsletter at unitedspinal.org/newsletters.

PHOTOS

“I ENCOURAGE MY FELLOW ADVOCATES TO FOLLOW UP, KEEP ATTENDING THESE EVENTS, AND MAKE YOUR VOICE HEARD.”

— ADAM LANE

Top left: Engineer and SCI research advocate Rob Wudlick meets with members of United Spinal’s Corporate Advisory Council during ROCH.

Top right: The mood was joyful at the Congressional Reception. Advocates enjoyed reconnecting and relaxing after a successful day of legislative visits.

Lower left:

portation

Lower right: Mississippi chapter leader Johnny McGinn enjoyed his firstever ROCH legislative visits.

United States Department of Trans-

advisor Kelly Buckland shares a laugh with United Spinal Association board member Monica Wiley.

Left: “This was my fourth Roll on Capitol Hill,” says Adam Lane, a United Spinal member from Oklahoma.

“One of the things I really enjoyed was that my representatives remembered talking to me in the past, so having that rapport makes a huge impact and keeps policymakers engaged with you. I encourage my fellow advocates to follow up, keep attending these events, and make your voice heard.”

Top: Brian Denny, a United Spinal member from South Carolina, meets with Rep. Joe Wilson (R-SC).

Above: Kenny Menendez shakes hands with Kansas member Scott Mendenhall while fellow Florida member Al Salvi looks on.

“Wherever you find yourself, in whichever space, you are bringing that disability lens to the conversation,” said Emily Voorde, assistant director, White House Office of Public Engagement, in her keynote address. She is pictured with Vincenzo Piscopo, president and CEO of United Spinal Association.

HOW WE CAN CONTINUE OUR ADVOCACY WORK TOGETHER

Our advocates may have departed Washington, but the Roll on Capitol Hill continues with all of you.

We need to make sure that Congress continues to hear from us on the issues we raised on Capitol Hill in June. One of the most important factors in getting members of Congress to support United Spinal on an issue is hearing from constituents back home via emails and phone calls. Sending messages through our Action Center is easy and can make a big difference.

Take action at unitedspinal.org/ action-center/#roch and stay tuned to find out more about our Virtual Advocacy Day Sep. 13.

— AlexAndrA Bennewith, vice president, government relations, United Spinal Association

RICHARD BAGBY: From Peer Support to Policy

BY SETH MCBRIDE WITH REPORTING BY HILARY MUEHLBERGER

Richard Bagby was sitting in a packed hotel ballroom with a bunch of people he didn’t know at a conference he wasn’t sure he wanted to be a part of. It was the first Monday morning of United Spinal Association’s 2016 Roll on Capitol Hill. As thenPresident James Weisman started his introductory address, all Bagby could think was, “How long am I going to have to do this? We’re here for six hours?!”

He thought about how he could be back home in Virginia, meeting patients at his local hospital, helping them adjust to life with a spinal cord injury. He could be getting things done instead of sitting around in a hotel. But then he started listening. Weisman talked about the issues they were going to tackle, like legislation to improve communitybased services and provide better access to mobility equipment. This wasn’t about making signs and picketing at the U.S. Capitol. It was about meeting with legislators, having conversations and making logical arguments about concrete policies that could help improve people’s lives. “It kind of clicked for me,” Bagby says.

PUTTING PEOPLE FIRST

Bagby never set out to be an advocate. In fact, he says, “I never labeled myself an advocate until Alex [Bennewith] called me and let me know I’d won Advocate of the Year,” he says. His focus after he was injured was on helping individuals adjust to life with a spinal cord injury. He was injured in 2008 and became friends with a couple of his occupational and physical therapists at rehab. “Early on in my recovery they started asking me to come and chat with some of their clients because they were experiencing some of the same things I had,” he says. “I didn’t realize at the time that I was doing peer mentoring. I was just

chatting with people.”

The chats became more regular. “It became apparent that there was a huge need for it that I couldn’t fulfill on my own.” At the same time, United Spinal Association reached out because they didn’t have a chapter in Virginia. Bagby and a woman whose son recently had a spinal cord injury decided to start a chapter. Bagby’s focus was on the peer mentoring program, and he says that everything the chapter does has developed out of that. “We take on issues as they organically present themselves to us via our membership,” he says.

That approach has led to programs as diverse as a ramp-building program to help people get back into their homes after rehab and a massive effort to ensure a new SCI-rehab facility went well beyond ADA compliance, setting a new standard for hospital accessibility.

“Richard has helped build the

Virginia chapter into a model for how United Spinal can serve its community,” says Vincenzo Piscopo, president and CEO of United Spinal Association. “The chapter really goes above and beyond to make sure all its members — from the newly injured to longtime wheelchair users — have the tools and support they need to succeed.”

LESSONS FROM THE ROLL

Bagby had never delved into legislation or government policy before Roll on Capitol Hill. But his initial experiences at ROCH taught him a few things. First, that policy advocacy uses some of the same skills that peer mentoring does. It’s having conversations and educating people — in this case, legislators and staff rather than people with new spinal cord injuries — about the realities of life as a wheelchair user.

Second, most of the policies that they

Above: The first time Bagby attended Roll on Capitol Hill in 2016, he didn’t consider himself an advocate. This year, United Spinal Association named him Advocate of the Year (below right).

were advocating for made sense from both a human and a fiscal perspective — they were an easy sell. Once you start comparing wheelchair components to the cost of flap surgery or extended hospital stays, quality cushions and well-fitting wheelchairs don’t seem so expensive. “We’re trying to educate the legislators to spend a penny so they can save a dollar,” says Bagby.

Third, advocacy often works. “We’ve always had at least one piece of legislation that was successful from [ROCH], which is incredibly rewarding,” he says.

But perhaps the most empowering thing about attending ROCH was seeing that there are hundreds of other people passionate about tackling the same issues. “Roll on Capitol Hill embodies all the work that chapters are doing across the country,” he says. “The fellowship and community built around it is worth [attending] in and of itself.” Bagby was able to see and learn from what other chapters leaders were doing in their own communities and take those lessons with him back to Virginia.

TAKING IT HOME

Not all issues that presented themselves to the Virginia chapter were solvable by simple solutions like building ramps. Bagby met a man named Chris in 2019, a high-level quad who had been discharged from rehab. Chris was going to go home, but his family decided they needed a little more time to make their house more accessible. So he went to a skilled nursing facility for what was supposed to be short stay. Chris still isn’t out of the SNF.

He originally had been fitted for a power wheelchair through Numotion, but NuMotion wasn’t able to deliver it to a skilled nursing facility. Virginia Medicaid policies stated that they wouldn’t reimburse complex rehab technology for people living in nursing homes, only for those living in the community. So Turpin wound up in a cheap, ill-fitting Hoveround power wheelchair. “He’s now had flap surgeries, a stroke and multiple hospital stays because he doesn’t have the proper equipment,” says Bagby. “Just yesterday I learned that he had a bilateral amputation because of more sores.”

His experience at Roll on Capitol Hill had shown that taking the issue to the legislature could be successful, but it would also be a ton of work. Megan Murphey, an ATP from Sheltering Arms, the hospital at which Bagby had helped with the design process, heard Chris’s story and convinced Bagby to start the fight. “She had zero advocacy experience,” he says. “But she gets really pissed off when she sees an injustice.”

Fortunately, Bagby and Murphey realized their knowledge was limited — they needed help. “The first thing we did is form a working group,” says Bagby. They recruited people who worked for Numotion, other vendors, local advocacy organizations, people who knew Medicaid coding and rules and who had connections at Virginia’s Department of Medical Assistance, which runs the state’s Medicaid program. “Megan and I became organizers. … We were getting the right people at the table. We only knew a smidgen of what the group needed to know, but these 50 people are each adding their piece. When you put that together, you get a bill, and a successful one.”

In April, Virginia governor Glenn Youngkin signed House Bill 241 into law, which requires Medicaid officials to study and work toward allowing coverage for complex rehab technology to people living in nursing homes. It’s a major step toward making sure that people get the equipment they need, wherever they’re living — a step that likely never would’ve been taken had Bagby not ventured into the ROCH hotel ballroom seven years ago.

What Bagby has learned since then is that he is an advocate, and advocacy, just like everything else in life, is about people. Being successful starts with one skill: “Networking, networking, networking. It’s so beneficial across so many different aspects, especially for folks with spinal cord injuries — whether you’re trying to figure out how to become independent, or you’re trying to make legislative change or societal change. It’s knowing people. And you can’t know people without getting out there and introducing yourself.”

Vincenzo Piscopo, John McElroy and Bagby celebrate at the 2022 ROCH Congressional Reception.

“ROLL ON CAPITOL HILL EMBODIES ALL THE WORK THAT CHAPTERS ARE DOING ACROSS THE COUNTRY. THE FELLOWSHIP AND COMMUNITY BUILT AROUND IT IS WORTH ATTENDING IN AND OF ITSELF.”

Bagby and Ian Ruder hit Capitol Hill in 2018.

COLOSTOMANIA

Why Some Wheelchair Users Wish They’d Chosen a Colostomy Sooner

BY JENNY SMITH

Mentioning a colostomy in an online forum is akin to yelling “Fire!” in a crowded space. Suddenly nearly everyone is mobilizing and has something to say. It makes sense, because managing a bowel program is one of the trickiest, most frustrating, and mentally consuming aspects of life with an SCI. Ever-lengthening routines, incontinence, hemorrhoids, and numerous other issues leave many wheelchair users looking for an alternative to suppositories, enemas, and stimulation.

I ended up going a different route (see sidebar), but a part of me wishes I had taken the time to listen to my peers and better understand how something so initially unappealing could be so beloved by so many users.

A COMPLICATED DECISION MADE EASY

Steve Harris, a T9-10 incomplete para, returned to work as a TV news director six months after his injury while still adjusting to his bowel program. In his first two years postinjury, he used every sick day to deal with bowel accidents that occurred at work.

Harris saw a gastrointestinal doctor, increased his fiber and switched to Enemeez suppositories. He finally asked about a colostomy, and his doctor referred him to a colorectal surgeon. “It was a hard decision because it’s a major life change, but ultimately it wasn’t too difficult to make because I was so frustrated with my existing bowel routine,” he says.

The surgical procedure for a colostomy involves bringing part of the colon through the abdominal wall and stitching it to the outside of the abdomen. An “end” colostomy uses the end of the colon and is permanent, while a “loop” colostomy opens a hole in the colon and attaches it to the abdomen; this procedure is typically reversible. Both procedures create a stoma where stool is eliminated into a bag, usually worn full time on the abdomen.

Between the poop emojis and jokes, most comments fall in two very different camps: “It’s the best decision I’ve ever made,” and “I’d never wear a bag of crap on my belly.” When I started having issues with incontinence in 2008, I leaned towards the latter, probably because I never spoke with anyone who actually had a colostomy and took the naysayers’ comments at face value.

Barring complications, the surgery can usually be done laparoscopically, minimizing the incision and making for easier healing. Many SCI recipients reported minimal or no pain post-op. Harris wasn’t as lucky with his loop surgery. “I was in the hospital for about four days, then they sent me home with a home health nurse,” he says. “I had developed a wound where the skin around the edge of the stoma separated. They extended my home health, which was really helpful because I had a hard time finding products that would work for me.”

At that point, Harris started to doubt his decision. “After surgery, just looking at the bag, then having the problems with products, I didn’t have a lot of optimism,” he says. Surgeons say to expect five to eight weeks to heal as the stoma shrinks and your digestive system adjusts to its new reality. In six weeks, Harris was back at work. Once he found the right

Steve Harris hasn’t had to take any sick days from his job as a TV news director since getting a colostomy.

wafers (attached to the abdomen to hold a bag) he could go through his day with confidence. He’s only had one major blowout, which he managed to clean up at the office. No need to take a sick day.

“I spend barely any time on it in the morning. When I change the wafer every four to five days, it only takes about 20 minutes. It frees me up to do everything that I want to do during the day,” he says. “It has worked out and been a really positive thing for me.”

INCREASED INDEPENDENCE

For Racheal Palmer, a C6 quadriplegic from Texas, a colostomy solved her growing problem with incontinence and increased her independence. For the first 14 years after her injury, Palmer relied on her mother to assist with her bowel program. “I’ve always been afraid that if my mom dies, who am I going to teach how to do digital stimulation?” she says.

On top of that, in 2013, she started having bowel accidents. “There was one year where I had diarrhea every single day,” she says. “I had an accident at least two or three days every week.” She modified her diet and eliminated anything that might trigger an accident. “I was terrified to eat. If I had a family function to go to, I’d plan ahead by not eating. I was so scared of having an accident. And I just wanted to have a beer. One beer without fear.”

Palmer says her positive experience with her own urostomy eventually helped ease con cerns about a colostomy. “It got to the point where it was an easy decision,” she says. “I was like, I’m over this.”

Her surgery went smoothly, but her re covery was complicated by a surgeon who refused her pleas for any sort of pain medication. While her bowels worked better almost instantly, Palmer struggled with dysreflexia and discomfort for a few weeks.

Even with the lack of hand function, Palmer was changing her bags days af ter her surgery. She is now completely independent with her bowel program. “I don’t have to worry

Racheal Palmer, a C6 quad, is now completely independent with her bowel program. “Not once have I regretted it.”

OSTOMY VOCABULARY

COLOSTOMY:

A colostomy is placed in the large intestine, and output is typically formed or solid.

ILEOSTOMY:

An ileostomy is placed in the small bowel. Output is liquidy.

WAFER OR FLANGE:

The adhesive portion of the colostomy appliance. Wafers may be pre-cut or cut-to-fit for the size of the stoma.

ONE-PIECE SYSTEM:

The wafer and bag/pouch are one piece. The entire appliance is removed when changing out a bag. May not be the best option for people with sensitive skin or limited dexterity.

TWO-PIECE SYSTEM:

The wafer and bag are separate. The wafer can stay on multiple days, while the bag can be disposed of or reused.

The surgically created opening from the bowel to the abdomen.

now about going to the bathroom. I can take care of myself.”

Since the colostomy, Palmer can eat or drink a beer or glass of wine without fear. “Not once have I regretted it. This summer, I get to eat ice cream!”

PROS AND CONS

Colostomies can be a boon for your independence even if you can’t manage them with your own hands. Unlike Palmer and Harris, Shawna Buchannan didn’t choose to get a colostomy. It was her doctor who insisted on the procedure to prevent infection after flap surgery for a stage IV pressure wound.

Despite 15 years of doing a two-hour bowel routine, Buchannan, a C5 quad, had been adamantly opposed to a colostomy. “My only regret now is that I didn’t get it sooner,” she says. She needs help changing the bags but no longer has to plan her life around going to the bathroom. The surgery has given her more time and made caregiving easier. “My boyfriend learned how to change the bag. It’s a lot better than someone putting their finger up your butt,” she says with a laugh.

Even though time savings, increased independence and easier caregiving are common outcomes, it’s important to remember that colostomies aren’t all sparkles and sunshine, and they aren’t guaranteed to solve all your problems. Physically and emotionally adjusting to having a stoma can be difficult.

For Harris, who has been married for 28 years, self-image wasn’t as much of a concern as it is with many. “It wasn’t a big deal, and, honestly, I didn’t have the best body image anyway.” Before her colostomy, Palmer had been so fearful of having a humiliating accident that she didn’t date for 10 years. The increased confidence that she would be conti nent more than made up for any body image con cerns post-surgery.

“The colostomy was a game-changer when it came to relationships. It was the first time I was in a relationship where I allowed myself to actually fall in love with someone. I couldn’t do that before,” she says. “My sex life improved because I didn’t fear the humiliation of hav ing an accident.”

As she moved from her 20s into her 30s, she became more comfortable with her body the way it is. “I’ve got ten to the point where if a colos tomy bothers a man, then that’s fine. I’ll find someone who can accept me as I am.”

What about the odor? While there is no way to escape the fact that poop smells, today’s pouches do a good job of con cealing the smell, and there are a number of products that help reduce the odors that escape when chang ing bags. “I don’t have an odor that I have

“My only regret now is that I didn’t get it sooner,” says Shawna Buchannan.

IRRIGATING A COLOSTOMY

Irrigation can be a good option for people looking for more control of their bowel schedule. Flushing the bowels with water via the stoma mimics an enema and evacuates them. With irrigation, little to no output may occur for 24 hours. Some people may even be able to “cap off” their colostomy, using a small cap instead of a bag.

Kimberly Thomas chooses to irrigate her colostomy so she can completely clear out her system before starting the day. It also keeps her bowel movements

tubing, and a sleeve—or large bag—into which the

scented castile soap to help her colon contract for

head, removes her regular closed-end pouch from the flange on her body and attaches the irrigation sleeve, which allows access to the the tubing into the stoma and opens flow. It takes about five minutes -

to deal with except for when I’m changing the bag,” says Harris. “Generally, when everything’s working like it’s supposed to, I don’t have any smell to worry about.”

One thing often not mentioned when discussing ostomies is the sound. Any gas you have will now pass through the stoma. The result can be unsettling and surprisingly loud, but most people learn to live with it.

James Lee, a C5 quad

from Oregon, accepted the smells and sounds as small drawbacks compared to the relief his colostomy brought after years of bowel issues. “From day one after my injury, I had bad motility with my gut,” he says. “I kept getting backed up, and it just started hurting.” He tried diets, cleanses, juices — anything and everything to relieve his constipation and ease his discomfort. “I committed to everything I thought might help, but nothing did,” he says.

His gut issues landed him in the ER multiple times and

MY STORY

For the first 20 years of my injury, my bowel program worked rather well. As a quad, I had to have help, but it was manageable. Around 2008, I started having accidents. I’d have to leave wherever I was — work, volunteering, sports — and get cleaned up. I eliminated everything I could from my diet. I saw five gastroenterologists, none of whom had answers or solutions.

came to dominate his daily life. In 2018, after talking with his doctors and many in the SCI community, he got a loop colostomy.

“I instantly loved it,” he says. The colostomy made his days easier and provided relief, but after about two years he started having issues again. His bowels simply weren’t moving enough. More hospital visits and more discomfort forced Lee to consider his options. After much deliberation and consultation, he opted for surgery to remove his large intestine and get an ileostomy.

In the procedure his surgeon connected his small intestine to the existing stoma and removed the feces-filled bowel. Though the ileostomy presents a number of new management issues and possible complications, it’s hoped that connecting higher up in the digestive tract will improve motility. Lee isn’t sure what to expect, but he is optimistic. “The biggest fear you have is the fear of making the wrong move,” he says. “I still feel like I have a huge question mark. I know I did something that needed to be done, but I don’t know if it’ll make me feel better.”

Harris and Palmer summed up the consensus.

“A colostomy isn’t for everybody,” says Harris. “It’s a big surgery and commitment. But if you’re having problems with the bowel routine, and you can’t seem to get it under control, it’s a perfectly legitimate option.”

“The only thing I would change is doing it sooner,” says Palmer. “Now, it seems silly that I waited this long. Life could have been a lot easier. This summer I’m planning on going to California to visit friends. I’m not scared to travel! This has opened up my life.”

I learned about continent ileostomies from another person with an SCI. The two most common procedures are the Kock Pouch and BCIR (Barnett Continent Intestinal Reservoir). Both take bowel tissue to form a pouch and stoma, and you empty waste from the internal pouch into the toilet using a catheter. The surgery and mechanics are similar to those of a Mitrofanoff procedure, which allows you to empty your bladder with a catheter inserted into a stoma. However, with a continent ostomy, the risks are greater than a Mitrofanoff and involve more possible complications. The biggest concern is the lack of knowledgeable surgeons if something goes wrong.

I shared the information about the continent ostomy with my urologist, rehab doctor, primary care and two gastrointestinal doctors. The colorectal surgeon said he wouldn’t recommend it due to the high risk of complications, but I was desperate and proceeded with the surgery.

One surgery tuned into five surgeries, fifteen weeks in the hospital, and two weeks of rehab to regain my strength.

I don’t regret having the surgery. I’m now completely independent with my bowel program. However, I continue to experience complications such as pouchitis, fistulas, sodium and potassium deficiency, and dehydration.

I wish I had taken the time to consider a colostomy. Read more about The Pros and Cons of a Continent Ostomy with SCI at jennysmithrollson.com/the-prosand-cons-of-a-continent-ostomy-with-sci.

— Jenny Smith

“THE COLOSTOMY WAS A GAME-CHANGER WHEN IT CAME TO RELATIONSHIPS. IT WAS THE FIRST TIME I WAS IN A RELATIONSHIP WHERE I ALLOWED MYSELF TO ACTUALLY FALL IN LOVE WITH SOMEONE. I COULDN’T DO THAT BEFORE.”

— RACHEAL PALMER

Smith

BY IAN RUDER ILLUSTRATIONS BY OWEN SWIFTER

No one can tell you what lies ahead when you roll out of rehab. You are thrust into life with SCI with minimal instructions, and every decision you make impacts your future in ways you can barely understand. It all seems overwhelming. Over 33 years of covering life with SCI, we at New Mobility have come to believe that the best strategy for navigating the journey is to listen to others who have rolled before us. To that end, we reached out to a diverse group of wheelchair users at different phases of their personal journeys so they can share what they’ve been through, what they’ve learned and what they see ahead.

PHASE ONE

Age: 22 Injury: C1-2 Years with SCI: 1.5 Artist, TikTok Creator

“I’ve always been an optimist and a positive person, and being paralyzed didn’t change that.”

Melissa McRoy

Age: 51 Injury: T2, L4-5, S1 Years with SCI: 8 Mom, Student

“It’s been an up-and-down eight years, but I’m happy where I am and excited for the future.”

Rebecca Koltun

PHASE TWO

Jemal Mfundshi

Age: 53

Injury Level: C6-7

Years with SCI: 28 Mobility Equipment Rep Motorcycle Racer

Chris Benson

Age: 62

Injury Level: C6-7

Years with SCI: 46 Photographer Entrepreneur Grandmother of Twins

“I’ve climbed out of a deep hole and I’m moving forward on my terms.”

“I’ve worked hard to accept that my life is the way it is and not let the little things stress me out.”

WTF Happens Now? 1

After almost nine months in hospitals and rehab following my injury, I was nervous about leaving. I’d grown used to being around trained staff and having easy access to the medications and equipment I needed. What would I do if I had an emergency and all these things weren’t readily available? I was also worried I was going to be really bored without the hours of therapy I’d grown used to. On top of all that, the home I grew up in was still being remodeled, so I’d be temporarily moving into an assisted living facility.

I made it through a six-week stay in assisted living and returned to a freshly remodeled home courtesy of the NBC show George to the Rescue. There was a ramp, elevator, and widened hallways and doors I could navigate independently using my sip-and-puff head array. They even redid the deck and made a sweet outdoor patio space with a firepit where I can hang out.

My friends and community have been incredible. My par-

Even with all that support, managing my caregiving situation and finding the full-time assistance I need has been stressful. In part because of the pandemic and the nursing shortage, at one point I had almost no outside caregivers. My parents are amazing and have sacrificed a lot for me, but I feel guilty relying on them for stuff like night care. I hate having to call them because my neck hurts or I need some water.

Thankfully, I’ve found more consistent help. I posted the jobs everywhere and my parents both got the word out wherever they could. The situation now is still complicated — with some caregivers coming from an agency via Medicaid and some private aides covering shifts the agency can’t cover — but it’s way better. Seeing my parents able to live their lives and not be responsible for so much of my care makes me happy. It took some time, but after 16 months, I feel I have a pretty good handle on my health and how to manage it.

Rebecca Koltun

Plainview, New York

C1-2 for 1.5 years, Age 22

Rehab: Four and a half months at Spaulding; four months at Glen Cove Center for Nursing and Rehabilitation March 2021 Paralyzed at age 21 December 2021 Finished rehab, moved to assisted living February 2022 Returned home

anymore. I don’t want to treat patients if I can’t use my hands. More than that though, I’m just not interested in being a doctor.

I still scramble to find things to keep me busy, but right now I’m really enjoying making art and TikTok videos. I was never that into art before my injury — I was more into sports and athletics — but I started mouth painting during rehab and have grown to enjoy it. I’ve sold a few paintings and I really want to start selling more. There seems to be a demand, so I’m looking at opening my own Etsy shop.

I got into TikTok because it was fun, but I’ve gained over 42,000 followers, and I’m making a little money now. My videos are very much me and embrace my dark humor. Sometimes my friends help me edit my videos, but I’m able to do it indepen dently using my GlassOuse head mouse. I love seeing people’s

Melissa McRoy

T2, L4-5, S1 for 8 years; Age 51

When I got out of rehab in 2015, I was lost. A few weeks earlier, I didn’t even know what Guillain-Barré syndrome was. Now I was paralyzed and headed home in a wheelchair that didn’t fit me after a shortened two-week stay in rehab at TIRR. I had no clue how to do most of my care, and I’d only been out in public once in my chair. I was a single mom, and with no family or support system in the area, I had to get home to my teenage daughter and two young sons. I had no choice.

My nerve pain was unbearable — a single touch could make me cry. I still hadn’t gotten any of my strength back, and I was an emotional wreck. On top of that, my house lacked any adaptions, forcing me to rely heavily on caregivers to access

reactions to what I create. It’s crazy to think 15.5 million people viewed something I made.

Beyond art and TikTok, I’m finally getting back to doing lots of the things I enjoy. I’ve got an adapted Chrysler Pacifica that makes going places easy. I’ve become a regular at the beach. I saw The Kite Runner on Broadway, and I just snagged front-row seats at a OneRepublic concert. Not only were the seats unbelievable, the lead singer pointed at me twice.

I’ve always been an optimist and a positive person, and being paralyzed didn’t change that. In a relatively short period of time, I’ve weaned myself off the ventilator (I use a diaphragmatic pacer 24/7), learned to manage my caregiving, found new hobbies and generally healed from my injury.

the bathroom and get in the front door.

Home therapy visits helped, but most of my learning and improving was trial and error. I watched a lot of videos and learned from people sharing online. Trying to regain control of my body was physically tough, but watching how it impacted my two younger kids and trying to make sure they were OK was even harder. I tried to be as independent as possible, but inevitably ended up asking them for help.

One time, during the period I was teaching my youngest how to use the restroom by himself, I asked him to grab me something so I could use the bathroom. He looked at me, puzzled. “Mommy, you’re a big girl, you shouldn’t do that.” It kind of crushed me, but eventually I had to laugh because I could see he was just trying to process my new disability.

Jemal Mfundshi

C6-7 incomplete for 28 years, Age 53

I left rehab focused on regaining my independence and getting back to work. Despite my C6-7 injury, at that time I functioned more like a C5, with no triceps and limited wrists. I had a tenodesis splint, a dig (dil) stick, a sliding board and a loaner chair. I could dress myself in sweats and a T-shirt, transfer, and I didn’t need too much help — as long as it was a good day.

I moved in with a woman I’d been seeing for about a month before my injury. She lived up a flight of stairs in an apartment. I had to be carried up to get in, but once inside I could get to all the important places. Alone at home, I missed the structure of rehab and being around other people in chairs.

I’d started attending quad rugby practices during rehab and made a point of going every week. I became great friends with

Chris Benson

C6-7 for 46 years, Age 62

By the time I left rehab at Craig Hospital in 1977, I already had a fierce desire to live independently. I adjusted to my accident and my new life in a chair.

I returned home to finish high school, then moved back to Denver for the summer to live with my Craig roommate, Sharon. She had an amazing energy and attitude about life, and that helped me get a good start in my wheelchair journey. We shared an apartment and worked out at Craig but spent more time having fun. We transferred into her two-door Monte Carlo and took in all the scenery, tourist traps, fairs and concerts we could.

From early on, I prom

another rugby player who happened to live a half-mile away from me. He’d drive his stock Dodge Grand Caravan to my place, and I’d transfer through the sliding door onto the floor (he’d had the seats removed) and we would drive to a local bike trail and push. Every time, we got a little stronger. When we started, I could barely push a half-mile. At the end of the first year, we completed the Portland Marathon together in racing chairs.

I knew getting physically stronger would make me more independent, but I hadn’t anticipated how it would help me emotionally. Learning to transfer from the floor to my chair gave me a huge psychological boost and the confidence to get out and do things without having to worry about what would happen if I fell out of my chair.

Around a year after my injury, I’d regained decent triceps and some hand function. I figured this is what I have to work with. I focused on continuing to get stronger and building my endurance so I could go back to work full time.

because of my disability. A good example is when Sharon and I saw the Grateful Dead at Red Rocks. Back then the only accessible seating was all the way in the back — miles above the stage. We were not having any part of that. We asked some big guys if they’d help us get down to the stage, and they agreed. Those guys turned out to be the Isley Brothers. They gave us tickets to their upcoming show, but more importantly we ended up in the front row for a Grateful Dead show.

The following year I moved to Tucson to start a new chapter in my life. I met a new crew of friends, lived on a ranch with 12 cabins on five acres. No one really worked too

Great rehab helped send Benson on an adventurous path.

Exploring Options for #WheelchairLife

Back in the Driver’s Seat 2

After a year or so of struggling to get back to living my life the way I wanted, things started to improve. I started attending the Metropolitan Multi-Purpose Center, and when I saw a flyer for their adaptive offerings one day, decided to give them a try. The center had a gym, pool and a bunch of different adaptive classes and teams, but it was the community that really helped me. When I first went, I didn’t know anyone — not only in the disability community, but in Houston. I’d only lived here a few years and didn’t have family around.

Some of my new friends encouraged me to try wheelchair basketball. I’m a girly-girl, so I opted for tennis. I went to a weekend tennis camp and actually liked it. On top of the exercise, I knew getting out and socializing was good for me mentally and emotionally, so I joined the adaptive tennis team at the University of Houston.

Now I attend Tabata Tuesday workout classes at the MultiPurpose Center every week in addition to working out on my own and attending other social events there. Through the center, I got involved with two great support groups, and the friends I’ve made there have been key to regaining my independence. One took me out in her car to teach me how to drive with hand controls. I still don’t have a vehicle I can use independently, but I’m confident in my abilities.

Eight years after acquiring my disability, I’ve regained a lot of the strength I lost and some of the function. I’ve recovered full use of my fingers and hands. My core is strong, and I’ve even gotten some ankle function back. I’m a lot more independent around the house, but still need assistance regularly as my strength comes and goes. My kids are old enough now that they can help me and get paid by the state, but for a while, managing caregivers was a nightmare. One time, my son caught an attendant swapping out my two-ply toilet paper for one-ply rolls she got from a gas station. I told her I would have just given her a roll if she had asked!

My biggest physical setback came in 2019 when I went into

Melissa McRoy

Houston, Texas

T2, L4-5, S1 for 8 years, Age 51

Rehab: Two weeks at TIRR Memorial Hermann

TIMELINE

2014 Guillain-Barré syndrome at 43

2015 Rehab at TIRR

2016 Peer support, adaptive sports

2017 Took classes

2019 Anaphylactic shock

2021 Attended community college and joined University of Houston adaptive tennis team

2022 Developing clothing brand

anaphylactic shock from a bad interaction with one of my medications. I blacked out and ended up spending a week and a half in the hospital. That led to dysphagia, a swallowing disorder that made it much harder for me to eat. For a while I pureed everything, and to this day have to be careful about what and how I eat. I’m a big juicer now and enjoy a lot of soups.

As I became more confident and figured out the day-to-day stuff, I started working on other goals like finding work. I took some classes at the local community college in 2017 and 2018, but none of the job opportunities worked out.

I’ve always loved fashion and modeling and wanted to launch my own fashion business but lost my self-confidence after I was paralyzed. I couldn’t put pants on by myself, so I wore nothing but dresses for a year. My feet were too swollen to wear any of my fancy shoes, and on top of that I had foot drop.

I still remember my first trip to the mall when I started to get my fashion confidence back. I dressed up like I was going on a date — a real head-turner! Some stared at me. I went right up to them and said hello. People tell me I have a great spirit and contagious smile, and if I can use those to disarm some people, I’m all for it.

As I got my sexy back, I returned to the idea of launching my own fashion company and started working out what I needed to do to make it happen. I knew I’d need some marketing skills, so I enrolled in a marketing class at Houston Community College.

PHASE TWO

Around the same time, I started competing with the University of Houston adaptive tennis team. I go to practice every Thursday, and earlier this year I won my first tournament. I had never imagined that was even possible. I was even prouder to see my kids’ reaction and pride.

It’s been an up-and-down eight years, but I’m happy where

Jemal Mfundshi

C6-7 incomplete for 28 years, Age 53

About 14 months after my injury, I returned to work. Voc rehab helped me modify my car so I could drive, and the semiconductor manufacturing company I’d worked for came through on their promise that there would be a job for me when I was ready. I wasn’t able to physically do the job I had before, so I went into human resources. I was just happy to have a job and not be dependent on SSI.

Returning to work wasn’t easy. I’d worked with those people for five years before my injury, and they all knew me as a fit 24-year-old. Now I used a manual chair and had a quad gut. I was very self-conscious. Additionally, everything I had known was different now — doors were heavy, things were out of reach, the bathroom was tricky — it was a challenge.

Thankfully, everyone was super supportive and over time it got easier. The conversations shifted from all being about

I am and excited for the future. I wish I had started my clothing line a long time ago, but I feel closer to where I want to be than I have been in a while. I’ve taken the keys to my life back! I’m bold now. I want to do my thing. I notice now that people latch onto me in the support groups that I’m in, and I want to encourage them to realize they can do whatever they want.

“Over time it got easier,” says Mfundshi.

anything wheelchair-related, more just lack of compatibility. I kept playing rugby and building my strength and stam-

Chris Benson

C6-7 for 46 years, Age 62

My 20s consisted of school, travel and photography. Life seemed easy and carefree.

One of my friends gave me a 35 mm camera for my birthday and I fell hard. It was all I thought about and all I wanted to do. I enrolled in community college to learn the technical bits and lived in the darkroom. I started with makeshift studios and a lone 35 mm camera. As a wheelchair user, I knew I would never get hired as a photographer’s assistant, so I had to work twice as hard. I couldn't get a bank to believe in me. Instead I focused on finding mentors I could follow around. I was constantly learning and made lots of mistakes, but I became established and worked all the time.

I built my portfolio by convincing boutique owners to let me shoot their clothes and accessories at scenic resorts, old adobe towns and the docks and beaches in Mexico. I loved organizing these events. I took

required.easy to use.

footrest heights adjustable. have “total-lock” Lightweight and durable, quality aircraft-grade aluminum. Compact, convenient, and PORTABLE! Won’t Rust or corrode; easy to clean. Virtually maintenancefree. Cushions are available in (3) colors and remove easily for cleaning. Optional accessories include: wheeled custom travel bag, positioning belts, slide-out commode tray, 2-way adjustable headrest, and upgraded cushions!

all of it very seriously and yet was one of the best and funnest times in my life.

Ten years after my injury I broke my neck for the second time. I was getting out of a car with my dog’s leash around my wrist. She bolted and took me with her. I fell right on my neck and broke it at the same spot. I had fusion surgery and a halo for four months, then healed up and got back to life as usual.

I went back to school to make myself more marketable and eventually moved back to Denver in search of opportunity. That opportunity came in the form of a chance to shoot for the disability resource book Spinal Network (from which New Mobility was developed). After years of shooting models, I discovered a new love for focusing on real people and disability. The next thing I knew I was on a plane for the West Coast to photograph people for the book.

In her 20s, Benson lived for photography.

Joy and Hardship: Adulting

Does Not Discriminate Living Life on Our Terms

Coming off my divorce, I wasn’t looking for a new relationship, but through my peer mentoring at the local rehab hospital, I met a new quad who had also just gone through a divorce. We talked about everything, including our mutual struggles with self-image as quads, and we became close friends. We ended up moving in together, and 10 years later, marrying.

One of my other passions had been racing bikes. After getting injured in a racing accident, I didn’t think I’d ever again feel the way I did when I was racing. But my new boss at the mobility dealership loved racing cars and introduced me to autocross, timed racing on a set track. He had built his own custom hand controls for clutch and shift and had more dexterity than I did, but he got me racing stock cars with an automatic transmission. That really rekindled my passion for speed.

I’ve owned and raced in a ton of cool cars and currently roll in a C5 Corvette. Eventually, I started thinking about what it would take to get back on a motorcycle. I’d gotten more hand function and upper body strength, but I still didn’t have enough trunk or tricep strength. But when I saw a video of a para on a motorbike, I figured if he can do it, so can I.

I bought an old bike, then I fabricated retractable landing gear and put on a push-button shifting system. I took it to the same track where I had my accident and rode for the first time in 19 years. It was the scariest thing I had done since being in a

chair, but also one of the coolest. Being able to overcome the fear while feeling the thrill of being on a fast sport bike again was one of those paramount moments in life.

Racing also helped fill the gap left when an unfortunate rugby accident brought an early end to my time playing. An illegal hit resulted in back damage, two surgeries and severe neuro pain I deal with to this day. Outside of that, I’ve been pretty fortunate when it comes to health. I haven’t had any pressure sores and just a few urinary tract infections here and there.

Accepting the way I look has always been a struggle. I still hate my posture, my quad gut and my skinny legs, but over time I’ve learned that appearance doesn’t matter that much and I’ve adapted. I’ve also learned to find silver linings, like my skinny legs making it easier to transfer.

Keeping things in perspective is key. In my job as a mobility dealer, I see a lot of people who’ve given up or let themselves go. I try not to judge, because I know how hard and complicated life can be, but I do make a point of reminding myself to keep working my ass off and keep pushing.

That’s the message I’ve always tried to instill when I’m mentoring people with new injuries or anyone in the community. Every once in a while I run into people I mentored years ago and it’s so rewarding to see how far they’ve come and the people they’ve become.

After almost a decade of living in apartments together, my

wife and I bought a house in 2009. It didn’t need too much work to accommodate both of us, but we fixed up the bathroom and ripped out some carpet. Our house is our own little secluded cave with our three cats.

As I head into my 28th year in a chair, my main focus is maintaining my health. Every day I see other chair users with different medical issues, and my family has issues of its own. After trying some different diets, I settled on a high-protein diet and at 53 I’m in better shape than I have been in the past 15

Chris Benson

C6-7 for 46 years, Age 62

Eventually I moved home to South Dakota to be closer to family and open a photography studio. After years of being a little fish in a big pond, I was ready to try being a big fish in a little pond. I renovated an old auto shop and started Chris Benson Photography. Finally I was making serious money. It felt great. I bought more equipment, hired an assistant and expanded my marketing. I channeled my love for dogs into fundraisers for the Humane Society. In 22 years, I helped raise over $50,000 photographing families with their pets.

Everything changed in 2002 when I adopted a daughter. She had stomped into my studio a year earlier as one of many foster kids who came for professional photos to show prospective parents. I knew at that moment I wanted to adopt her. After asking a caseworker what to do, I completed a 10-week class and had a home inspection. Being a single quad didn’t seem to matter to them.

But, honestly, nothing really could gave prepared me for what was ahead. Everything moved so fast, and two months later she was living in my home. I was a foster parent for a year before I adopted her. They told me she had a diagnosis called Reactive

Jemal Mfundshi

Portland, Oregon

C6-7 incomplete for 28 years, Age 53

Rehab: Two months at Legacy Rehabilitation Institution of Oregon

TIMELINE

1994 Paralyzed at age 24 1995 Returned to work 1999 Started job with mobility dealer 2000 Completed Sadler’s Midnight Sun Ultra Challenge in Alaska 2001 Back injury in quad rugby 2009 Bought a house 2011 Married longtime partner 2013 Rode a motorcycle 2022 Repping Action Trackchair

years. A few years ago, I was sure I was going to need rotator cuff surgery and that scared the shit out of me. How could I take care of myself — much less help my wife — with one arm? I tried a low-carb diet and miraculously, within two weeks my joint pain was gone. I never tell people that what works for me will work for them, but I do say you need to figure out what works for you. It’s about working smarter, not harder. I’ve worked hard to accept that my life is the way it is and not let the little things stress me out.

Attachment Disorder, or RAD, a condition where children don’t form healthy emotional bonds with their caregivers, often because of abuse or neglect at an early age.

A little shell-shocked, I vowed to help this little person who’d had every adult fail her. Being a single mother is difficult, but being a quad single mother adds a whole other dimension. Managing my business and taking care of my daughter proved too much, so after 14 years I closed my photo studio to spend more time with her. It was a rough ride. Life was very difficult for us, but we made it through.

Around the same time, in my late 40s, I decided to try online dating. I had always been a little unsure of myself in the dating department. I was aware of my insecurity back when I lived with Sharon, who always had guys around, but I never would have guessed it would follow me throughout life. I’ve had several relationships and a few serious ones, but had never put myself totally out there.

I posted a picture of me in my chair and was very open and honest in my dating profile — I didn’t want there to be any surprises. I wrote that I used to think I wanted a guy who made me feel like I didn’t have a disability, but really I wanted one who makes me feel like it’s OK to have a disability. I had quite a few responses and many dates. It was fun, but nothing long term came out of it.

4Keeping it Together

Healing as a Way of Life

For as long as I can remember, I’ve derived a big part of my self-worth from being busy. That started to change when I tore my rotator cuff in 2016. The surgery and recovery slowed me down physically and mentally.

Needing assistance with everything drove home how central my independence — and living independently — is to my identity. I had grown so used to filling every minute of every day, that it was difficult to find a new healthy balance. I had to learn to stop pressuring myself and realize I don’t need to prove anything to anyone, or put myself out of my comfort zone to feel like I’m thriving. It’s OK that instead of going out, I’d rather garden and spend time with my dogs. My family and close friends are what matter most to me, and while I still have a passion for photography, it doesn’t define me.

All of this has been tested over the last few years as I’ve endured an unprecedented series of physical setbacks. More than 40 years of a slow-moving gut and lengthy bowel programs at last took their toll when I underwent emergency surgery on my small intestines in 2019. I woke up with an ileostomy, a 10-inch incision and no belly button. Months

Chris Benson

Rapid City, South Dakota

C6-7 for 46 years, Age 62

Rehab: Four months at Craig Hospital

TIMELINE

1977 Paralyzed diving at 16

1978 Graduated from high school

1979 Attended college

1980 Moved to Tucson, lived on a ranch

1987 Broke neck again

1990 Returned to school

1994 Pursued photography in Denver

1996 Moved to South Dakota

1997 Started CB Photography

2002 Adopted foster daughter

2010 Closed CB Photography

2015 Opened a used clothing store

2016 Tore rotator cuff

2020 Ileostomy, reversal, pressure sores, broken femur, amputated leg

2021 Started ChrisCooks

later, what was supposed to be a five-day hospital stay for re versal surgery turned into a six-week hospital ordeal. I got a feeding tube because my body refused to accept food. I also developed pressure sores that took months to heal.

When I finally recovered from pressure sores, I promptly fell while transferring and broke my femur. I tried every way to heal the bone, but years of sitting had made it fragile. Meanwhile a bad infection was stirring. Less than a year after the intestinal surgery, I had my left leg amputated.

That was the lowest point of my life. I was in a dark place, waiting for the next thing to go wrong. I felt defeated and thought my body was done. I was tired, and worried that my time on wheels had caught up to me. Taking care of this body felt like a full-time job. I avoided going out at all costs.

But my time as a wheelchair user has shown me a fun ny thing about a strong mind: Given time, it can heal. I started feeling stronger, and eventually everything healed. My doctor suggested ketamine treatments to help my anxiety. I had a 45-minute session every week for five months. I’m still not sure if it helped,

but they were nice trips to la-la land. I am still battling anxiety and probably always will to some degree, but I began to get my motivation and creativity back.

Going through this has forced me to reconsider my perspective on inspiration. I have always been confused about that word. I didn’t know I would ever need inspiration: I was the one to be doing the inspiring. It’s only in these later years that I’ve searched for it to help me through tough times. Now I find inspiration all around me.

I’ve reestablished a healthy life balance. When I was in the

I still love photography and continue to shoot pictures, and to top it all off, I’m a grandma. It’s the best! My daughter has grown to be an amazing person and mother. I couldn’t be prouder. I feel good — my body and soul feel more connected. I’ve climbed out of a deep hole and now am moving forward on my terms.

Setbacks seem to be a part of my life, the hardest part. Now I am getting major work done on my teeth. All the years of taking meds that kept my mouth nice and dry, and open-

“

I feel good — my body and soul feel more connected. I’ve climbed out of a deep hole and now am moving forward on my terms. ”

See Benson’s work at cbtalent-photography.com.

a CHANCE to DANCE

BY CHERYL ANGELELLI

The music of a fiery Tango fills the room. You can feel the floor vibrate from the beat of the music as the graceful and elegantly clad dancers take their positions. At first glance it may look like any other ballroom dance competition, with one exception: The competitors are all wheelchair users.

This inaugural event, hosted July 16 in Detroit by Dance Mobility, was the first ever Para Dance Sport competition in the U.S. More than a dozen dancers from across the country participated.

Para Dance Sport was founded in Sweden in 1968 and is currently practiced in nearly 40 countries. However, it has been slow to grow in popularity in the U.S.

After retiring from Para Swimming in 2014, I was looking for a new competitive adapted sport and fell in love with wheelchair ballroom dancing. I soon realized the opportunities for others to experience Para Dance Sport in the U.S. were limited, so I co-founded Dance Mobility in 2015. Funded by a grant from the RIM Foundation, and in partnership with Fred Astaire Dance Studios-Michigan Region, Dance Mobility provides free monthly group lessons in wheelchair ballroom dancing.

In 2019, my dance partner, Tamerlan Gadirov, and I began to work with other Fred Astaire studios across the country to start local wheelchair ballroom dancing programs. Dance Mobility has launched programs in six states and continues to grow.

We are excitedly planning for an international competition next year, welcoming para dancers from around the world.

To learn more about Dance Mobility, visit dancemobility.org

Top: 14-year-old Eve Dahl gets her make-up done for the competition. The Wisconsin teen is an emerging star in Para Dance Sport.

Middle: Competitors take to the floor to warm up prior to the start of the competition.

Left: Cheryl Angelelli and her partner Tamerlan Gadirov have competed internationally in Para Dance Sport, and they continue to be ambassadors for the sport in the United States.

Photos by Sylvia Jarrus

Photo by Paul Stoloff

Top, Right: 11-year-old Zoey Spencer started coming to Dance Mobility classes over a year ago because she wanted to dance with her dad. Their emotional duet won praise from the judges and audience.

Top, Left: Alonzo White, pictured with his partner Beatrix Weih, from Michigan, has been attending Dance Mobility classes since it opened in 2015. “Dancing has given me back my life again,” White says.

Left: Lauren Arena and her partner Arkadiy Stepanchuk, from New York, have been part of the ballroom scene for years, but this was the first time they competed together as partners.

Photos by Paul Stoloff

‘BEST OF’ SERIES

BEST OF is a web-first series highlighting the places that offer truly memorable wheelchair accessible experiences across the country — and occasionally internationally. To catch the latest installments, sign up for our newsletter at newmobility.com/newsletter.

BEST VENUE: One of the world’s greatest natural amphitheaters now boasts exemplary access for wheelchair users.

BEST FINE DINING: When the restaurateurs are wheelchair users, the whole dining experience is transformed.

BEST HOTEL CHAIN: This relative newcomer offers consistently spacious and accessible suites in 400 locations.

BEST VENUE

Picture this — you’ve somehow convinced your favorite band of all time to play a concert in your living room. They’ve brought a booming PA system, lights and all the fixings for an incredible show. Someone offers you a drink while the band sets up, and you happily accept. As the music begins, you think, “How is this even possible? I have my favorite band playing right in front of me!” Then you turn around and see nearly 10,000 other people watching the same show.

This is what it feels like to watch a concert from the front row wheelchair-accessible section of Red Rocks Amphitheater in Morrison, Colorado.

ACCESSIBLE RED ROCKS

BY KIRK WILLIAMS

For those of you who don’t know about the esteemed Red Rocks Amphitheater, it’s strategically placed in the foothills of the Rocky Mountains, overlooking Denver to the east. You can see the skyline shimmering in the distance from about halfway up the cathedral seating. If you turn around and look toward the back of the theater, you will notice the tiered seating built into the red stone on top of the remains of crushed boulders. The two towering spires on either end create a wraparound feel and a superb audio experience as they reflect the soundwaves toward you and the other concertgoers. It’s a fantastic experience for anyone who has the privilege to go.

I often attended Red Rocks before using a wheelchair and

never had a bad time. But nothing compares to the experience I’ve had since becoming a wheelchair user.

Your wheelchair-accessible Red Rocks concert experience begins when you pull into the fully paved, accessible parking lot. Most of the lots at Red Rocks are gravel, where tailgaters often show up hours in advance to kick back and enjoy some quality time with friends and strangers before the concert begins. It’s a scene of its own.

The ADA parking lot for front-row ticket holders has attendants to make sure nobody misuses the accessible spots — they may check your ID and placard to ensure they’re authentic. There’s even a wheelchair-accessible porta-potty

Topher Downham, Kirk Williams and Matt Feeney (left to right) have about 10,000 people envying their seats.

available. Once you’re ready, a wheelchair-accessible service shuttles you up the long, steep incline to a gate near the back of the stage. You then roll slightly uphill past the hustling crowd to the front row seating. There is a different parking lot for the top row accessible seats that you’ll be directed to if you have those tickets.

Upon arriving at the front row, an employee will check your tickets to make sure you are the one who purchased them and that you require accessible seating. They’ll give you a wristband and show you to your assigned seats. Seat 45 is dead center, so anything near that number is golden. However, it doesn’t matter what seat you have — you’ll still have an incredible view. There are a few seats set aside for hearing/visually impaired people that overlook a place on the stage dedicated to an interpreter if one has been requested.

Red Rocks has revised the accessible seating quite a bit in the last couple of years. There are now folding chairs available if you wish your friends or family to sit beside you rather than on the bench behind. They’re also nice if you need more back support or just want to get out of your wheelchair. You can bring up to six guests, but you must purchase all their tickets yourself. They are non-transferable and non-refundable, so

THE LAWSUIT THAT MADE IT POSSIBLE

The accessible experience at Red Rocks hasn’t always been so ideal. Before a 2016 lawsuit, ticket resellers would snap up the prime-location accessible seats and turn them around for a profit to the general public. A coalition of disabled concertgoers and disability-rights organizations  sued the City of Denver, which owns Red Rocks, for lack of “meaningful access.”

Kirk Williams, who wrote this article, was one of the plaintiffs in the suit. It took almost two years, but in 2018, a settlement agreement changed ticketing practices to make the front-row accessible seats non-transferable. Whoever purchases the tickets must show ID and the credit card they used to buy them when they arrive at the concert. This has helped make it possible for people with disabilities to enjoy a concert experience like few others in the world.

make sure they are definitely attending.

There will be an employee walking around to take drink orders. Instead of navigating the lines and hordes of people, you can have your drink brought directly to your seat. An employee will also likely inform you that there is a wheelchairaccessible restroom on a level-surface stage behind one of the concession stands. This is an employee/accessible restroom with a large enough area to turn around and shut the door behind you, complete with a baby changing station should you need it. It’s nice to have a private restroom since the public bathrooms are usually busy and gross during the shows.

When you find your seat and get over feeling like a VIP, you’ll be dumbfounded by just how close to the stage you are. You’ll likely ask yourself, “Is this really happening?” The only thing separating you and the stage is a handful of bouncers and a see-through railing. Your view of the band is practically unobstructed.

LET THE MUSIC BEGIN

After the band comes on the stage and you have picked your jaw off the floor, you’ll notice that the audio is superb, and the view is unmatched. Be aware — you are sitting very close to the speakers — the front row at Red Rocks is loud. Even if you enjoy loud music, you may want to pack a set of earplugs.

I often find myself rolling away from the front row and looking up toward everyone else enjoying the performance. There’s a special energy at Red Rocks that brings tears to my eyes.

Once the show begins, there’s not much else to do but sit back, smile and dance your wheels off. Whether it’s Paul Simon, Snoop Dogg, Nora Jones or anyone else, it’s clear that the performers are having just as memorable an experience as everyone else. There have been numerous interviews with

Unlike many outdoor concert venues, Red Rocks’ accessibility extends to the parking lot.

musicians who gladly admit that Red Rocks is one of their favorite venues. This feeling is evident the second they step on stage with a huge grin.

As the sky darkens, you can look up past the show lights to the gorgeous Colorado stars. The moon will often peer over the top of the stage as if to remind you this is exactly where you’re meant to be.

When the show finishes, you are welcome to work your way back down toward the shuttle whenever you are ready to

go. There may be a slight wait to board depending on when you depart, but it will take you right back down to your car, where you can exit the venue. It’s easy and seamless.

All in all, Red Rocks Amphitheater is one of the most incredible venues I’ve been fortunate enough to visit since being a wheelchair user. I have told my friends many times that there are a few perks to being disabled — sitting in the front row at Red Rocks is certainly at the top of the list.

If you enjoy live music, a surreal out-of-body experience, and want a lifetime memory, book a trip to Red Rocks Amphitheater. I can’t recommend it highly enough!

Getting Tickets: You can purchase either front row or top row accessible seats for Red Rocks on AXS.com. Shows usually sell out quickly, so buy as close to the on-sale date as possible.

CONTENTO BEST FINE DINING

BY SETH MCBRIDE

It was toward the end of the evening at Contento — after the ceviche and the panisse with uchucuta sauce, midway through my second glass of Alvarinho, as I decided between seaweed speckled deviled eggs or a Peruvian causa for my third course — that I realized something remarkable. I wasn’t in the way.

I had been savoring the cuisine at this small restaurant in Manhattan for an hour or more, and I’d yet to be jostled by a single elbow or have my wheels tripped over by a server. My back-end wasn’t protruding into the arterial flow of the room, nor was I stuck in a corner, unable to escape for a pee. “Excuse me, sir, can you squeeze in a little so I can get by? Oop, just a little more?”

No, here I hadn’t dealt with any of that. When I arrived, I rolled up to the front door via a wide, gentle concrete ramp from the sidewalk. Before I had a chance to think about opening the door, it opened for me. Mara Rudzinski, one of the restaurant’s managing partners who was serving as the host that night, greeted me and showed me to my spot at the lowered bar counter. Even as a party of one on a weeknight, I had needed a reservation. I quickly understood why Contento has rarely had an open table since it opened.

OPENING WITH A BANG

Contento was the brainchild of two wheelchair users, Yannick Benjamin and George Gallego. It opened in June 2021, staking itself as a restaurant opened by and for people with disabilities, and it immediately became one of the most talked-about new establishments in New York City. The  New Yorker and New York Times both reviewed it glowingly. Eater and Timeout both put it on “best of NYC” lists.

Most of the early coverage focused on the restaurant’s commitment to inclusivity. But then the awards kept coming. The New York Times named it one of its 10 Best New Restaurants of 2021. The World of Fine Wine deemed Contento to have the best micro wine list in the world for 2021, and Wine Enthusiast tapped Benjamin as its sommelier/beverage director of the year. Esquire listed Contento as one of the best new restaurants in the country. “In the most positive way … it was really overwhelming,” says Benjamin.

Benjamin is a sommelier who was New Mobility’s 2017 Person of the Year alongside Alex Elegudin, his partner in the disability-services nonprofit Wheeling Forward. Gallego worked with Benjamin at the Axis Project, a community and fitness center for people with disabilities in New York City. Gallego

The view of Nathaniel Rateliff and the Night Sweats from the front row wheelchair accessible seats at Red Rocks.

Selecting a space that needed a complete build-out allowed Benjamin and Gallego to design Contento’s interior to be as barrier-free as possible. Note the lowered bar and the wide aisle in the middle of the restaurant.

also runs a nonprofit that transitions New Yorkers with disabilities  out of nursing homes. Accessibility and inclusivity are not buzzy marketing terms for these two men, rather concepts that have been a driving force throughout their post-injury lives.

Benjamin had the idea of opening his own restaurant since he started using a wheelchair, the result of a car accident when he was 26. He’d already worked in some of the finest restaurants in NYC, but when he went for interviews as a wheelchair user, the conversation always seemed to focus on the physical demands of working the floor. Benjamin eventually found a job at Le Du’s, an iconic wine shop in the West Village, and then worked the floor at the University Club in Midtown Manhattan. Still, he never stopped dreaming of opening a space where access was a given.

It wasn’t until Gallego found a space in East Harlem — small, needing a complete build-out, but inexpensive and “an empty canvas” — that the pair decided to go for it. They didn’t know what the restaurant was going to be yet, just that it would be “as barrier-free as possible” for customers and employees and have a reasonable price point.

“Contento” means content in both Italian and Spanish, a nod to the feeling they intended to evoke and to the history of the neighborhood in which Contento is located. East Harlem — often called El Barrio or Spanish Harlem — was predominantly Italian throughout the 19th and early 20th centuries before transitioning into a Latino neighborhood in the ‘40s and ‘50s. Benjamin says it was important that the name paid homage to the immigrant groups that had made the neighborhood what it was. “I didn’t want to be known as the person who’s going to come in gentrifying a neighborhood that I already had such a deep respect for,” says Benjamin, whose parents emigrated from France. “I don’t want to change a thing about it. I just want to be a part of it.”

Benjamin and Gallego, who lives just down the block from the restaurant, wanted Contento to be a place where

people from the neighborhood would feel welcome and be able to afford coming in for a drink and a bite. From my single-night sample size, it appears that they have succeeded. Next to me at the bar sat a (very chatty) postal worker, originally from the Dominican Republic, who lived a few blocks away.

THE FARE

The menu isn’t cheap — Benjamin says the average dinner tab is $80 per person — but relative to other New York hot spots, it’s a bargain, and the menu is wide-ranging. The ceviche is $23, while the dry aged cote de boeuf (for two) will set you back $175. Everything is Peruvian-influenced, thanks to chef Oscar Lorenzzi, who grew up in Lima before working his way up through the New York kitchen scene. The food is creative — think of a risotto-style dish made from the Andean grain quinoa, fries made from yuca, a South American tuber, or octopus with a chimichurri sauce and cauliflower gazpacho.   Benjamin put together the wine list, with a section sourced from wineries with social and environmental impact. There are bottles and glasses to fit every budget and palate. You can get a $13 glass of Spanish Grenache or a $290 bottle of Domaine Roulot chardonnay and everything in between (or above). The postal worker and I stuck with the sub-$15 glasses,

Benjamin, a sommelier, often works the floor, serving wines from a custom-built tray.

while behind us, a guy who had enough money to not feel out of place wearing a T-shirt and jeans kept the bottles flowing.

Maybe expensive T-shirt guy learned something, though, as the 11-page wine menu has disability facts and explainers peppered throughout. If he found himself contemplating a Uruguayan Marselan, which apparently has flavors of blackberries, tar, hot stones and violets (yum?), he may also have learned that in 2020, “29% of workers with a disability were employed only part-time, compared with 16% of [workers] without a disability.”

Benjamin and Gallego were prepping for catering an event for the Mayor’s Office for People with Disabilities the night I was at Contento. But Benjamin is often working the floor, rolling from table to table, checking in with guests, recommending, serving and typically treating everyone he talks to like they’re the most important person in the room.

BEYOND PHYSICAL ACCESS

Perhaps the most exciting thing about Contento is that it manages to make its physical accessibility an afterthought. My night there reminds me of a conversation I had with the architect  Karen Braitmayer, who described accessibility as a framework within which good design can flourish. At Contento, accessibility is a framework from which you can fully experience great food, drink and service.

Don’t get me wrong, Contento does physical access as well as anyone. Tables are spaced around the edge of the restaurant, and wheelchair users have enough space to fit at every table without staff having to move things around. All tables are set at a height that can accommodate most manual and power wheelchair users. The bar is split evenly, with one section at typical height and the other set low. The outdoor seating is level and as roomy as the inside. There is one bathroom, and it has enough space for a power wheelchair user to turn

around and recline if necessary. A server will bring you adaptive utensils if you request them, and menus are available in braille or via QR code and a screen reader if you need.

But what sets Contento apart is the attitude of the staff and the ambiance formed by the regular presence of customers with varying types of disabilities. As a disabled person, you are meant to feel welcome here. Benjamin says they regularly bring in educators from different disability groups — low vision, deaf and hard of hearing, cognitive and sensory disabilities — to train staff on culture and etiquette. “I’m still learning,” says Benjamin. “We’re not claiming to be the endall be-all. … Teach us. Give us some feedback. How can we do better?”

The goal is to create an environment where people with disabilities feel comfortable being themselves. Benjamin tells the story of a lawyer who came into Contento not long ago. She has arm and hand weakness, and typically brings an attendant to restaurants to help her eat. But at Contento, she dined the way she does at home: by bending down and eating directly off her plate. “That’s the greatest compliment,” he says. “That’s exactly the way we want people to feel.”

THE FULL EXPERIENCE

Contento made a name for itself because of access and inclusion, but tables stay full because the team does everything well. The service is so good it can be unnerving — servers seem to appear only at the precise moment you need something. The effect is that you’re always taken care of but never feel like you’re being rushed.

As I sat at the bar, I noticed a woman in a wheelchair rolling up to one of the outdoor tables. In a few minutes, a few more wheelchair users joined her. I looked again, and sure enough, I recognized all of them from my work with New Mobility.

It was a bit of a surreal moment. They had all been featured in the magazine, but I had never met any of them. The “disability community” often only exists online, a collection of individuals with shared understanding and experience stitched together by social media posts, Facebook groups, blogs and websites. Yet here we all were on a Tuesday night because there’s no better place in the country for a wheelchair user to have a meal, sip a drink and catch up with friends, or make new ones.

My meal finished with the fancy deviled eggs. I didn’t have to think about an exit strategy through a gauntlet of patrons. I just unlocked my brakes, went to the bathroom and rolled back to the front door. Rudzinski offered to call me a cab, but it was a crisp fall night and rolling a few miles through the city back to my hotel seemed as good a nightcap as any.

George Gallego chats with customers in Contento’s outdoor seating area.

HOME2 SUITES BEST HOTEL CHAIN

BY SYLVIA LONGMIRE

Since I started traveling as a fulltime wheelchair user in 2015, I have stayed in hundreds of hotel rooms across dozens of countries and states. If I’m traveling domestically, I never know what I’m going to get when I roll through that hotel room door, other than the 99.9% chance I will come across at least one ADA violation.

The biggest problem when it comes to consistency across wheelchairaccessible rooms in the United States is that at least 90% of hotels are franchises. That means that the parent corporation, like Marriott, IHG, Hilton, etc., only dictates some things that must be standardized across the brand, like logos and some interior decorating touches. Construction companies, interior design companies, layouts and standards vary widely across the same brand. You could stay in 20 different hotels of the same brand that look nothing alike and have varying levels of accessibility.

The major hotel corporations are always looking to innovate and come up with different brands that meet different traveler needs. The Home2 Suites chain is a Hilton brand that launched in 2011 and was Hilton‘s first new brand in 20 years. Today, it has approximately 400 properties across the U.S. While most of them are franchised, the interior design elements are very standardized with minimal deviation and layout differences — something highly unusual for such a widely franchised hotel chain. This is an incredible bonus for travelers who require wheelchair accessible rooms.

I had never heard of Home2 Suites until I started making travel arrangements for a long road trip with my two sons in 2021. One of our major stops was Rapid City, South Dakota, and I wanted to take them for a couple of days at an indoor water park. Home2 Suites was one of three hotels adjoining the park, and looked newly constructed, so I took a gamble and booked a three-night stay. I was excited they had accessible rooms with two queen beds and a sofa bed, so we could each have our own bed, plus a roll-in shower — a relatively rare combination in hotels.

I was pleasantly surprised by that room, but it was only the first in a long line of fantastic stays at Home2 Suites properties across the U.S. Almost all of the rooms have been incredibly spacious. Our accessible room in Raleigh, North Carolina, was so big that my sons were passing a

football and running small drills.

As someone who needs a low bed to transfer, I love that the beds are relatively low and always around 22 to 24 inches above the floor. Plus, they have all been on legs and would accommodate a lift if necessary.

I’ve been equally happy with the consistency and quality of the roll-in shower bathrooms. Every Home2 Suites rollin shower had water controls and showerhead within reach of the fold-down bench — which I only find in maybe half the hotel rooms I stay in. The bathroom configuration is also pretty standard, with a roll-under sink and great grab bar placement near the toilet. There is usually a vertical grab bar, which makes it much easier for me to transfer.

One feature I particularly like is their push-button controls for the blinds. In so many other hotels without these controls, furniture blocks access to the curtains and pulls, and sometimes I must ask the staff to close my curtains. Similarly, Home2 thermostats are installed lower and within easy reach. I need electrical outlets near the bed to charge my power chair and phone, which has never been a problem at Home2 Suites. Their outlets also have USB ports.

Home2 Suites is an extended-stay type of hotel, so the accessible rooms typically have a sink, small dishwasher, refrigerator, microwave and pullout table. They offer free breakfast every morning with typical options like precooked omelets, waffles, yogurt, fresh fruit and cereal. Locations tend to be just outside a city’s downtown area, but nightly rates are reasonable and budget-friendly.

THE NICEST ACCESSIBLE HOTEL I’VE EVER STAYED IN

The Conrad New York Downtown is a gorgeous luxury hotel situated along the Hudson River in downtown Manhattan. It’s across the street from the Brookfield Place mall and an easy 10-minute roll from Freedom Tower, the 911 Memorial & Museum, the Oculus Transportation Hub and Wall Street. While its five-star status and luxury amenities are reflected in the price — depending on the day of the week and time of year, a night can be in the $400-$500 range — I chose this hotel mostly for the location. Out of hundreds of hotels I’ve stayed around the world as a wheelchair user, it is handsdown my favorite.

My two sons and I booked an accessible deluxe suite with two double beds, a sofa bed and roll-in shower. The sofa bed was in a living room that was separated from the bedroom by a short hallway and bathroom. Sliding dividers at both ends of the hallway provided privacy. The living area had a work desk and the hallway area a small sink and minifridge. The entire room offered plenty of space to roll around and reach everywhere. All lights and curtains had reachable push-button controls, and there were numerous outlets by the beds.

The double beds were incredibly comfortable. Because they were platform beds without box springs, they were not too high above the floor. Fortunately, the platform was open, with plenty of space beneath to slide hoist legs if needed. The sofa bed had a four-inch memory foam mattress with a

folding flat platform, and was easily the most comfortable I’ve ever experienced.

The roll-in shower was fabulous for many reasons. First, the fold-down bench was padded for comfort. Second, it was easy to reach the shower controls and the showerhead, which was placed in the lowest position. The shampoo and shower gel dispensers were not attached to the wall, but left on a reachable shelf. The toilet seat was only slightly lower than my power chair, making transfers easy.

The accessible room at one Home2 Suites was big enough for Longmire’s sons to run football drills. The chain’s roll-in showers consistently work well. The padded shower bench at the Conrad adds a luxurious touch.

Giving Back Helps Us Give More

Since 1946, United Spinal Association has been there for members like you, ensuring that life on wheels is more accessible, affordable, and offers more oppor tunities for living fully.

Membership is free, and we intend to keep it that way. However, if you have means to help with our mission, please consider a donation of any amount by visiting: www.unitedspinal.org/ways-to-give

You can also call us at 800/404-2898, ext. 7203.

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on Capitol Hill: Educating legislators about technology and quality of life

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Magazine: Covering active wheelchair life

Cruise is already operating autonomous vehicle ride-hailing services on the streets of San Francisco. This photo illustration shows their Origin “robotaxi,” which was unveiled in 2020 and is scheduled to begin production in 2023. No timeline for when this guy is getting a footplate.

Six Things Wheelchair Users Should Know About Autonomous Vehicles

BY JENNY SMITH

In cities across the United States, autonomous vehicles aren’t a scene from a far-fetched sci-fi movie. They’re a reality.

It’s an understatement that autonomous vehicles, or self-driving vehicles, could change the lives of thousands of people with disabilities. Lack of access to accessible transportation limits opportunities for work, social activities and medical appointments for many wheelchair users. Driving is often not an option, either because of lack of function or the cost of after-market modifications. Accessible public transit is spotty at best in

public affairs team with a focus on accessibility at Cruise, a ride-hailing AV service headquartered in San Francisco. Before that she was the employment program director at United Spinal Association. “I always found that a huge barrier to employment for wheelchair users was transportation — or not having access to funds to buy an expensive modified vehicle,” Lee says.

But it’s not only about employment. “After my injury in 2002, I had to move from the suburbs of Chicago to the city. In Chicago, I could take the bus because they all had ramps,” she says. Getting to outpatient therapy and social activities was not a problem. But, she says, “as a young female in a wheelchair, I always felt a bit vulnerable riding the bus.” Plus, available bus routes and schedules made transport options limited. “This is why I’m at Cruise — and why I’m advocating for accessible AV transportation.”

Here are six key points you need to know about the autonomous vehicle revolution:

AVs will first drive people through ridehailing services

Autonomous vehicles are already delivering pizzas and snacks on college campuses, transporting groceries to customers’ homes from Walmart in Phoenix and moving truckloads of supplies and goods on major interstates. Toyota, Volkswagen, General Motors, Jaguar and other companies have jumped on the AV bandwagon, developing vehicles for personal and ride-hailing services.

most major cities and often nonexistent in small towns and rural areas. Paratransit companies are notoriously unreliable. We need better options.

Michele Lee, a C5-6 quad, is on the

A least three companies in the U.S. — Cruise, Waymo and May Mobility — currently offer AV ride-hailing services. Cruise offers driverless rides in San Francisco, while Waymo has been

operating for nearly two years in the East Valley of Phoenix and recently expanded service to downtown Phoenix and Sky Harbor Airport. May Mobility currently offers AVs with backup drivers in Ann Arbor, Michigan, and Arlington, Texas.

Each of these companies claims its goal is to provide more transportation options to people who have limited access to transportation — including wheelchair users. However, at this time, neither Waymo nor Cruise offers wheelchair-accessible services. May Mobility is the only company currently offering wheelchair-accessible autonomous ride-hailing services in the U.S. Erin McCurry, product manager and accessibility lead at May Mobility, says the company didn’t want to re-create the wheel. “We partnered with wheelchair-accessible van manufacturer BraunAbility to modify the Toyota Sienna Autono-MaaS vehicles to include ADA-compliant vehicles.”

Kent Keyser, a C3-4 incomplete quad and public policy fellow for United Spinal Association, says, “The vast majority of the focus is on designing vehicles to serve in fleets — like shuttles, taxis and ride-hailing services. Sure, someday you may see an automated vehicle for sale to individuals, but for the average passenger, the price tag for any AV in the foreseeable future is going to be way out of our reach.” Ride-hailing services will be the primary use of AVs for the majority of the population until the price of the systems drops significantly.

Current AV designs are hit and miss for wheelchair access Autonomous vehicles require a complete redesign to be made accessible.

Almost all AVs run off an electric battery, which provides a stable power source and clean energy. Current AVs place batteries in the floor of a vehicle. “The floor design has to be rethought and essentially redesigned,” says Keyser. “That takes time — several years, not months.”

Rethinking space usage is to our advantage. The Origin is Cruise’s purpose-built vehicle that “looks like a living room on wheels,” says Lee, laughing. “It has a ramp, a space for the wheelchair, and a transfer seat. We’re working with BraunAbility and GM to help Cruise develop the vehicle while keeping in mind that safety is the number one priority.”

When I asked Waymo about plans to add wheelchair-accessible AVs to its fleet, Orlee Smith, a product manager, responded: “We are a technology company focused on building a driver, not a vehicle. We work with [manufacturers] to bring our technology to their vehicle platform.” In other words, Waymo isn’t attempting to create an accessible vehicle — the company is leaving that task to vehicle manufacturers. The problem with this logic is that Waymo isn’t just a driver. It is also a service provider, one that offers rides in minivans, just not wheelchair-accessible ones.

Zoox, an AV company owned by Amazon, is developing an AV “robotaxi,” but its first-generation vehicle isn’t wheelchair accessible. The company says that it’s in the process of developing a wheelchair-accessible version, but there’s no firm timeline for completion. French startup EasyMile produces an autonomous shuttle that operates on fixed routes and features an integrated

wheelchair ramp. Similarly, Toyota has a wheelchair accessible autonomous shuttle, the e-Palette, which debuted at the Tokyo Olympic and Paralympic Games.

AVs are sparking a quest for a universal wheelchair-securement

system

If AVs are to be fully accessible — with no backup driver — wheelchair users needs to be able to independently secure themselves in the vehicle. While standard four-point tiedown systems are safe, many wheelchair

How Do AVs Operate?

AVs operate with software and hardware, including cameras that provide a 360-degree view, LIDAR (a remotesensing method to measure distance), radar, artificial intelligence algorithms and computer programming. Based on input received from hardware, AV software determines where the vehicle needs to go and predicts and responds to movement of objects, people and animals. Cruise sums up the AV process like this: “See. Think. Act.” The more the AVs drive, the more information they collect and “learn,” and the safer they become.

During that learning process, AVs use backup drivers. Once the AVs achieve an agreed-upon level of safety, backup drivers are phased out. May Mobility is still using backup drivers, or autonomous vehicle operators.

Communications Manager Brittany Lockard explains, “As our technology progresses, we’re working toward driver-out operations. In the interim, our AVOs provide an extra layer of customer service and safety redundancy in our commercial operations.”

Cruise is the first company to operate a commercial driverless ride-hailing service in San Francisco, one of the most complex driving environments in the world. “If we’re able to safely operate in San Francisco, we’re technically able to do it anywhere,” says Lee. “We’re excited to expand, but we know from a safety perspective we want to do it extremely well, and then start to expand.”

May Mobility is operating ride-hailing services in a couple of U.S. cities using BraunAbility-modified Toyota Siennas.

users can’t fasten them without help. Docking systems like the EZ Lock are customized for individual wheelchair users. We need a universal securement system.

A team from the University of Michigan Transportation Research Institute, along with United Spinal Association, BraunAbility, May Mobility and others, was selected to participate in the U.S. Department of Transportation’s Inclusive Design Challenge. The goal is to design an independent wheelchair docking station and automated belt-donning system. Current designs for the Universal Docking Interface Geometry will secure the rear wheels and back canes. Until this is developed, May Mobility is currently using the Q’Straint manual securement system with the backup driver securing the belts.

Accessible infrastructure is as important as the vehicles

It’s not just the technology and vehicles that need to be accessible. How does a wheelchair user enter and exit the vehicle? Dropoff zones, access aisles for ramp deployment, curb cuts and sidewalks all must be designed and constructed to provide door-to-door access.

Then, when construction changes accessible routes, how do AVs “know” this information? They partner with transit systems in each city to ensure drop-off zones are always fully accessible, says May Mobility’s McCurry.

Those within the AV industry are confident it will work, but service providers will likely be reliant on information acquired from many different sources. The timeliness and reliability of real-world accessibility information will be crucial to the functionality of autonomous vehicles for wheelchair users. Arriving at your destination in an accessible vehicle won’t be very useful if you can’t get out.

Other services have to be accessible too All AV services — payment, communication, selection of entertainment — must be fully accessible, not only for wheelchair users but also for deaf and blind com-

Autonomous Vehicle Safety

All AV companies agree that the goal of an autonomous vehicle is to safely and comfortably arrive at its destination. According to Waymo’s website, 94% of all accidents involve human error. But is AV technology really safe?

Waymo released a study in 2020 that gathered statistics from over 6.1 million miles of automated driving. According to the report, the 47 minor accidents involving a Waymo vehicle “show significant contribution from other agents, namely human-related deviations from traffic rules and safe driving performance. Nearly all the actual and simulated [accidents] involved one or more road rule violations.” More recent statistics released by the National Highway Traffic Safety Administration tell the same story. From July 2021 to May 2022, there were 108 crashes involving fully autonomous vehicles, and, “in most of the crashes, vehicles were struck from the rear,” the Associated Press reported (with humans doing the rear-ending).

munities. Fully accessible emergency response and rescue systems are also vital to ensure wheelchair users are not stranded on the road and can deboard an AV independently and safely in an emergency situation.

Delivery services, like Cruise’s partnership with Walmart in Phoenix, also need to consider access. Currently, the Chevy Bolt is used for deliveries. Their products — placed on the back seat of the vehicle — are not accessible to many wheelchair users. Cruise states that they plan to use the Origin for accessible delivery services when it becomes available.

We need sustained advocacy to ensure AVs work for us

As always, advocacy is key. Autonomous vehicles still have a long way to go before they impact the daily lives of the average person — disabled or not. However, Lee’s excitement gives me hope that accessible AVs are a real possibility in the future.

“I’ve rolled into the Origin,” she says. “I’ve been in it. It’s amazing. As a wheelchair user, I cannot wait for this vehicle to be on the road. We can talk about it all day long, but to be in it and experience it gave me goosebumps.”

Companies claim their goal is to provide access to people of all abilities, and some are making concrete progress in creating accessible AVs. But we need sustained advocacy to make sure they follow through on their lofty language. You only need to look at the multitude of lawsuits brought against Uber and Lyft to see how well ride-hailing companies accommodate people with disabilities in absence of robust accessibility regulations.

United Spinal and the We Will Ride coalition have been spearheading advocacy efforts to ensure AVs are accessible for everyone. “There are a number of opportunities for our members to participate in the design and development process of creating accessible AVs that will work for all of us — everything from answering in-depth surveys to brainstorming with auto and tech engineers to actually being part of a research study,” says United Spinal’s Keyser.

To receive updates on legislation and how to advocate for accessible AVs, sign up for newsletters from United Spinal (unitedspinal.org/newsletters) or follow the organization on Facebook, Instagram or Twitter.

Waymo is operating autonomous ride-hailing services in the Phoenix area, but none of their vehicles are wheelchair accessible.

EXERCISE THAT WORKS for Wheelchair Users

BY JESSICA FARTHING

Exercise is essential to preventing cardiovascular disease and living with a healthy heart, but finding exercise protocols and equipment that meet recommended criteria and work for wheelchair users can be very difficult. As an example, the American Heart Association recommends a “moderate” level of exercise five times a week to prevent cardiovascular issues. But the mainstream definition of moderate doesn’t fit wheelchair users who don’t have large muscle groups capable of burning calories and reaching standard aerobic exercise goals.

As always, wheelchair users need to think differently. Instead of getting lost trying to fit into categories and regimens designed for others, the focus should be on finding ways to achieve the desired physical outcomes, such as regular intervals of higher heart rates and/or increased oxygen levels. Everyone can find a way to achieve this that fits their abilities, time requirements and preferences. Even moderate levels of physical activity can improve mood, lower stress and assist with a good night’s sleep. It’s possible to reap

the benefits of a workout routine without the typical hours in a gym, by using a bit of creativity and new training methods.

BREATHING AND OXYGEN ARE KEY

As a dance and yoga teacher, Marka Danielle already had a deep appreciation of the importance of improving her strength and stamina when she became a C3-7 quadriplegic. Her first experience in a standing frame showed her how much work there was to be done. “The first time I tried it in the hospital, I threw up and passed out — it was such an enormous body change,” she says. Danielle refused to let a little dysreflexia keep her away from a vital rehab tool.

She found the breath work and meditation techniques that she had learned in yoga helped her stay calm during her workout. “Rehab taught me to gradually increase my height in the frame,” she says. “I’d do breathing exercises while I sat. I would fit in a meditation for a minute or two. I think the breathing helped me progress in rehab a little more quickly.”

The breathing also helped her associated nerve pain, and the yoga increased her flexibility, which allowed her

Before trying any new exercise regimen, it’s safest to consult with a doctor. Medications and secondary health complications, disabilityrelated or not, can affect your heart rate and capacity for high-intensity exercise.

Paul Hopkins stays motivated by working out with his wife, Angelique.

muscles to release, relieving discomfort from spending time in her chair. With no equipment needed, Danielle was able to find time to make the breathing exercises a regular part of her routine. “I would get on the yoga mat and concentrate on different breathing techniques,” she says. “My respiratory health improved by practicing box breathing, detox lion’s breath and kapalabhati breathing, also called skull shining breath.” (See Resources, page 55.)

Most importantly for heart health, research supports yoga breath work as a strategy to lower stress, increase oxygen levels and improve respiratory function. The European Journal of Preventive Cardiology published results finding yogic breathing may bring as much benefit for your heart as power walking. Danielle is a believer. “The whole point of yoga is to connect breath or unite the systems in your body,” she says. “When you learn to breathe more efficiently, you’re taking in more oxygen and nourishing all the cells of your body.”

When the coronavirus pandemic started, Danielle worked to be certified in face yoga, a method that tones and firms the face for a more youthful appearance. When she teaches face yoga classes for the South Carolina Spinal Cord Injury Association, she emphasizes the discipline’s “approachability.”

“I think that is a more accurate term than ‘accessibility’ and brings in some people who can’t move at all and would not give it a try if they heard ‘accessible,’” she says. “Face yoga is something anybody can do even if they can’t move their body. Yoga is about moving your energy, not moving the body.”

Danielle focuses on breathing practices, an integral part of any exercise class she instructs. “I didn’t have the ability to do yoga the way I’d always done, so the appeal of learning more about breathing practices was fascinating,” she says. “I can do face yoga leaning against the wall or from my bed or even if I’m hurting. I feel like it will benefit me and others for as long as I live.”

She is currently developing her own website with classes and a face yoga library that others can access to learn her techniques.

Marka Danielle practices yoga and breath work to reduce pain, lower stress, increase flexibility and improve respiratory function.

HEART RATE GUIDELINES

AND YOU

Many cardio exercise prescriptions are based on a percentage of “peak heart rate.” For nondisabled exercisers, there’s a simple formula to calculate your maximum heart rate: subtract your age from 220. Using that formula, as a 39-year-old, my maximum heart rate should be 181.

But as a C7 quad, there’s no way I’m getting my heart rate up to 181. It’s well studied that people with spinal cord injuries have lower maximum heart rates than nondisabled peers. But there’s no handy calculator for max heart for people with SCI. That’s because max heart rate varies from person to person, injury level to injury level.

Broadly, there are a few trends. The lower your injury level, the higher your potential max heart rate. The fitter you are, the higher your max heart rate. An athletic low para might be able to get their heart rate within 10-20 beats of their theoretical, nondisabled max. A non-athletic quad might be 80 beats per minute lower, while an athletic quad might be only 30 beats lower. The variability really is that great.

So, the only way to know your personal max is to test it out. Be warned — it’s going to hurt. Find an arm ergometer at a local gym. Warm up on an easy spin for 10-15 minutes. Then do a 10-minute interval. For the first nine minutes, go as hard as you can maintain. Then go all out for the next 30 seconds. When there’s only 20-30 seconds left on your timer, push yourself farther into the pain cave than you’ve ever gone. To get a true max heart rate, you are going to feel like you’re about to black out. Fun, right? As soon as you stop (and before you pass out) make sure to check your Fitbit, Apple Watch or heart rate monitor and see what it says. That’s your max heart rate. Now you have a baseline from which to calculate your percentages.

—Seth McBride

TOGETHER IS BETTER

Even if you find workout equipment or a regime that makes it possible to exercise, motivation can be difficult to maintain, given the difficulties and challenges of access. Paul Hopkins, a C5-7 quadriplegic, and his wife, Angelique, found that working out together was motivating in itself. The couple met after her mom had a spinal cord injury and Angelique

turned to an online support group. She posted questions to learn more, citing her job as a flight attendant and asking what could be improved on a plane. Hopkins decided to answer her, but not only because he could help. “She was beautiful,” he says.

The couple married in February 2022. They found that exercise and a healthy lifestyle was something they

had in common and began working out as a way to spend more time together. “We have a gym here at our apartment. We’ll go down, and he walks me through a workout. He’s so much better than I am,” Angelique says.

Hopkins has learned to adapt regular exercise equipment, like a SkiErg, using adaptable cuffs. He uses his rugby chair for CrossFit workouts and his TiLite manual chair for high-intensity interval workouts. “I push weights back and forth. I do shoulder presses in the chair, use stretchy bands and the medicine ball,” he says. He believes his high energy workouts contribute to his heart health. “It helps with circulation and my energy level.”

He says he monitors his heart rate using his Apple Watch. He shoots for a rate of 115-120, though he admits no one has ever given him guidelines on what an ideal rate is for active wheelchair users. (See sidebar.)

For Hopkins, marriage is the best motivator to stay committed and healthy. “We want to live for a long time with each other and we want to stay healthy,” he says. “We don’t want any health issues because we’d like a family, and want to be able to see our kids grow and to chase them around the park without getting tired.”

GOING ALL OUT WITH HIIT

Leah Gray, a T5-6 paraplegic, dedicated over 25 years of her life to playing and expanding the reach of women’s basketball. She played collegiately and on men’s and women’s teams before serving as the commissioner of the Women’s Division for the National Wheelchair Basketball Association.

After leaving basketball, she focused on her children as her full-time job. “I took time off to be in mom mode. We would exercise, but my son and daughter played a million sports. So being in two places at one time was hard enough. That was my cardio,” she says.

Almost five years ago, she participated in a study by the Human Engineering Research Laboratory at the

University of Pittsburgh that studied the health and fitness effects of HighIntensity Interval Training for people with spinal cord injuries. HIIT relies on alternating short periods of demanding physical activity with less intense recovery periods. The study found that 71% of the participants reported improvements in endurance, function and overall health. Gray was one of those. The study served as a “reintroduction” to HIIT and reinforced its value. “I definitely had more energy. The total health benefits of short spurt workouts helped me lose weight.”

For six weeks enrollees performed two 25-minute workouts per week. They started with a two- to three-minute warm-up, then did 10 high-intensity cycling intervals of one minute each, where subjects were trying to hit 85-90% of their peak heart rate. Each interval was followed with one minute of recovery time. They finished with a cool-down period of two to three minutes.

She was reluctant to use a full-sized handcycle, concerned about getting in and out on her own. The study provided an add-on, made by Quickie, that connected to the front of her chair, turning it into 10-gear, trail ready transportation. “It has two adjustable arms that raise your front casters enough to use on the bike trail,” she explained.

The HIIT study offered her a quick workout with many of the documented results of longer, endurance-type exercise. For Gray’s busy life, it was a benefit. “If you can get a nice workout in 20 minutes, I think that’s great. The interval training uses your arms and uses your body but doesn’t beat you up, I don’t think, as bad as hours of working out.”

Gray currently works out two to three times per week at a local Planet Fitness. She has adapted an old routine she got from an assistant coach on the U.S. Women’s Paralympic Basketball Team for her own high-intensity interval train-

ing. “I get a great workout in a lot less time,” she says. “I feel more energized, and I feel better about myself.”

RESOURCES

• More on Kapalabhati breathing, chopra.com/articles/releasetoxins-with-kapalabhati-breath

• Danielle’s Instagram Live with the founder of Face Yoga, instagram. com/tv/CXjyYm-lx0W/ ?igshid=MDJmNzVkMjY%3D

• Yoga and breathing, yogaformodernlife.com/ blog/vagus-nerve-and-yoga

• Marka Danielle’s site, faceyogawithmarka.com

OUTDOOR TRACKS

By Kary Wright

BUILDING AN ACCESSIBLE FISHING POND

The sun is starting to shine, the phone isn’t ringing yet, and the only sounds I can hear from my pondside dock are the chorus of serenading songbirds and the gentle hum of the aerator in the background. It’s a beautiful morning and a perfect setting to enjoy my coffee with the dogs.

I lift the handle on my custom feeder, and a handful of fish-food pellets drop into the pond. They start spreading out and slowly make their way across the water, using the breeze and the current as propulsion. I sip my coffee while the dogs hang over the edge of the dock, peering into the water, waiting for the action to begin.

After a few minutes of quiet contemplation, I’m rewarded as a twopound rainbow trout erupts from the water, attacking the food. The splash echoes across the pond, signaling other trout to join the frenzy. Soon the surface of the water is alive with jumping fish.

I feel lucky to be able to start the day like this. I’m able to do so because about 30 years ago my friends and I had a vision and the follow-through to bring it to life.

From Pondering to a Pond

I’ve loved fly-fishing since I was a kid. My family took yearly excursions to the mountains where we spent a couple of weeks fly-fishing for trout. I looked forward to these trips all

year. After school I often set up my fly rod and practiced casting. With ice cream pails on the lawn as targets, I’d try to land a small split shot weight into them. Soon I could drop a fly any place I wanted — a valuable skill for landing wary fish.

After my car accident, I returned home to my parents’ farm and tried to adjust to life as a quadriplegic. A friend rigged a rod and reel, and I got back to practicing casting on the lawn. I quickly convinced myself that casting a fly rod was possible. There

was only one problem: There were no lakes nearby that were accessible from a power wheelchair.

The solution to this problem started like so many other brilliant ideas — as beer talk among friends. If there were no accessible lakes nearby, we’d just make one. Problem solved.

There were a few minor obstacles. We had no equipment or water, and we lacked knowledge of raising fish. On the plus side, we had enthusiasm and lots of room. We borrowed a university aquaculture book, took a

With a custom quad-friendly feeder, Wright drops fish food into the pond, and the trout begin to jump.

course on building trout ponds, and scrounged together what money we could; my grandparents and parents chipped in, I had a little stash, and we found a government grant. All told, we figured about $5,000 should do it.

We learned what it would take to build a pond where the fish could thrive. The water would need to be at least 15 feet deep for trout to stay within their temperature range. Steep banks would allow fishing all around and prevent overgrowth of weeds, while aeration would keep oxygen levels high throughout the year to ensure the trouts’ survival.

A local man with a bulldozer and scraper surveyed the yard and laid out a plan to dig a large pond and landscape the yard at the same time. He understood that wheelchair accessibility was the primary goal. We shared what we knew about pond design, and he started right away. The pond — a oneacre, 25-foot-deep hole — took about a month to dig. We put a water well in and pumped for about three months to fill the pond over the winter. The next spring some friends brought an accessible dock from their marina.

Initially we had only rainbow trout, and I enjoyed many a fight with a large rainbow on the fly. Our pond is now full of minnows which must’ve been introduced by birds. The rainbow trout don’t appear to eat many

of them, so we stocked some brook trout. We are also planning to add some tiger trout, a cross between brown and brook trout. Apparently they are very aggressive, love to eat minnows, grow quickly and are easy to catch.

Trout will grow to 20 pounds or more if fed properly, so I needed a way to supplement their diet with trout food — high-energy pellets that make them grow fast and taste good. Food costs about $75 per five-gallon pail, and we’ll probably feed four pails over the summer.

Aside from the entertaining sight of a quadriplegic aimlessly spraying pellets everywhere but in the pond, throwing them with my quad hands didn’t work so well. The dog was gaining weight much faster than the fish — a new program was in order.

Fortunately, my friend Garnet, who can build anything, devised a one-off fish feeder I could operate. It consists of a five-gallon plastic pail with a spring-loaded ski pole down the middle. It is attached with strapping to the side of the dock so the pellets drop in the water. When the handle is lifted, the pole is pushed down, and a hole in the bottom of the pail opens to drop some pellets into the pond.

Even three decades later, spending my morning on the dock has become one of my favorite pastimes. I’ll wheel down, drop some food into the water and enjoy a coffee while watching the trout rise. I love to grow them big and watch them cruise by the dock in search of a meal.

I fly-fish occasionally when the fish are big, but watching them is fun, too. I’m currently in the rebuilding process. A couple of years ago all my fish died when an aerator failed. I upgraded my system, and now I’m enjoying watching the fish grow again. I’ll have eightplus-pound trout in a year or two, and this time they’ll be safe from low oxygen levels.

My parents and grandparents are long gone now, but every time I see a trout jump, I’m taken back to my childhood. Suddenly I’m a kid, fly-fishing with his family in the mountains, with not a care in the world beyond getting a trout to bite.

The fish population is growing again, thanks to a new aeration system. “I fly-fish occasionally when the fish are big, but watching them is fun, too,” says Wright.

“There were a few minor obstacles. We had no equipment or water, and we lacked knowledge of raising fish. On the plus side, we had enthusiasm and lots of room.”

IN THE MEDIA

By Teal Sherer

RAW BEAUTY PROJECT HEALTH

In Sara Jane Parsons’ portrait of me, my pregnant stomach is glowing. My hair is blowing in the wind. It is the first time I’ve been painted by another disabled woman, and it’s meaningful. The portrait is featured alongside 24 others in Raw Beauty Project Health’s UnstopABLE virtual exhibit that showcases women with disabilities who are unstoppable in their lives, yet are stopped from accessing basic health care.

Raw Beauty Project Health is a spinoff of the Raw Beauty Project — a photography exhibit created by Dr. Susan Solman and Wendy Crawford that debuted in 2014 and challenges perceptions of beauty and disability. It received worldwide attention, and the photographs were featured in O, The Oprah Magazine, TODAY.com, HuffPost, and Elle.com.

Like the Raw Beauty Project, Raw Beauty Project Health is personal for Solman and Crawford. Solman, a clinical pharmacist, podiatric physician and professor at Florida International University’s Herbert Wertheim College of Medicine, became a paraplegic at the age of 39. Crawford, a former model, TedX speaker and founder of mobileWOMEN.org, has been a quadriplegic for over 38 years.

Their disabilities have given them a first-row seat to the rampant discrimination disabled people face when it comes to health care. Solman has been turned away from doctors’ offices and hospitals for important medical tests due to lack of accessible equipment. Crawford relates how her doctor looked at her like

she was crazy and suggested she get a hysterectomy when she brought up having a child in her early twenties.

“There are known and statistically significant health care disparities that exist for patients with physical disabilities,” says Solman. “We are less likely to get physical exams, less likely to get weighed, less likely to get gynecological exams, less likely to get prostate exams and are less likely to get diagnosed with cancer.”

Solman explains the reasons are twofold. “Studies show that more than 90% of medical facilities lack accessible equipment. And medical professionals lack training when it comes to working with people with disabilities.”

To get Raw Beauty Project Health off the ground, Solman and Crawford asked

women with disabilities across the country to share their experiences. “It’s hard to connect when you just hear a statistic or hear something on the news, but by

Sara Jane Parsons paints Sherer from her home in Austin, Texas.

Al Kittel paints Kara Ayers from her home in Santa Fe, New Mexico. “It is assumed that our lives have less value so there’s less interest or urgency to medically treat us,” says Ayers.

telling stories and through the arts, it creates a way for people to understand. It can be a powerful, transformative educational tool,” says Crawford.

The responses painted a stark picture.

Tammy Jones, the National Vice President for Paralyzed Veterans of America, frantically searched for weeks to find an accessible mammogram machine after she was told she might have breast cancer. Kim Belliston, the co-chair of Disability:In Utah — an organization that promotes inclusion in the workforce — felt demoralized when a gynecologist suggesting they do her Pap smear on the floor because they didn’t have an accessible table.

I had recently been being prescribed the wrong dosage of a blood thinner. Because the scale in my doctor’s office isn’t wheelchair accessible, I guessed my weight. I was off by more than 10 pounds and received a lower amount of the medication than I needed. I got a blood clot and needed surgery.

Rendering Us UnstopABLE

Because of the COVID-19 pandemic, coordinating photo shoots with the 25 women selected for the project proved too complicated. Solman and Crawford pivoted and asked artists with disabilities to do artistic renderings.

I was paired with Parsons, who began mouth painting in 1995 as a creative outlet after becoming a quadriplegic. “Painting makes me happy,” she says. “It’s sort of like moving meditation. It’s nice to be super focused on something. I’m constantly problem solv-

ing and figuring something out. So, it’s an active process.”

Parsons is a member of the Association of Mouth and Foot Painting Artists Worldwide and says working on my portrait, which she based on a photo I had taken when I was pregnant with my son, was the first time she’s painted another woman with a disability besides herself. “It’s an honor to be asked to do it — to do a painting that is towards a cause, that is a piece of advocacy.”

Solman and Crawford are using Raw Beauty Project Health as an educational tool they can present to companies and schools to promote inclusivity and change. They also hope it empowers people with disabilities. “We’re used to knowing that there should be wheel-

chair accessible parking spots. We’re used to knowing that there should be a wheelchair accessible bathroom. But no one talks about how there should be accessible scales and exam tables,” says Solman. “Health care is the industry that is the least accessible and where the ADA laws are the least enforced.”

Parsons’ portrait of me hangs in my house. I treasure it. Being disabled is not always sparkles and roses, and it reminds me that I am not alone. It motivates me to keep up the good fight and to keep pushing forward.

To learn more about Raw Beauty Project Health and to see the UnstopABLE virtual exhibit visit rawbeautyprojecthealth.com

“It is the first time I’ve been painted by another disabled woman, and it’s meaningful.”

Photo courtesy of the Association of Mouth and Foot Painting Artists Worldwide

Artist: Brandon Athey

Artist: Kemi Yemi-Ese

PRODUCTS

By Michael Franz

MAGNAREADY ADAPTIVE CLOTHING

a considerable amount of time and effort. MagnaReady sent me a few samples of their clothing to test out and see if their adaptations do indeed make dressing easier.

Fordham Pants

The MagnaReady Fordham is a classic flat-front chino pant with magnetic closures replacing the zipper and Velcro replacing the button on the waistband. There is a nonfunctional button on the front of the pants concealing any evidence of the pants being adaptive. Another nice touch is that there are no buttons on the rear pockets, eliminating a potential pressure point. The pants fit well — the 34-inch waist pants fit as expected. I am six feet, three inches tall, and I usually order my pants with a 34-inch inseam to ensure that they are long enough while seated. MagnaReady only offers 30and 32-inch inseams, but the 32-inch inseam was long enough for me.

This magnetic cardigan is one of several crossover-style tops and dresses from MagnaReady.

MagnaReady is an adaptive clothing company that makes men’s and women’s casual and activewear. MagnaReady adapts their clothing with magnets to replace buttons and zippers to reduce

the need for fine motor control for dressing and tasks like cathing.

As a C5-6 quad, manipulating regular buttons and zippers without an adaptive tool is really difficult for me, and even with adaptations, it takes

I get dressed in bed, and the magnets and Velcro worked very well. When aligned closely, the magnets snap together quickly and hold well. The Velcro worked as well as one would expect Velcro to work. Both the magnets and Velcro were easy to undo by putting my thumbs in the belt loops and pulling apart.

When seated in my wheelchair, the pants were still easy to undo, but getting them to go back together was quite difficult. As with many wheelchair users, my quad gut expands considerably when seated, making it

difficult to get a waistband to close if it gets unbuttoned. I was able to put my thumbs in the belt loops and pull the waistband close enough to get the bottom magnet to secure, but that was it. I think that if I had gotten a bigger waist size, it would have been easier to get everything back together. Altogether, the pants look good and the magnets and Velcro work well as a replacement for the zipper and button, though I would recommend ordering a size larger than your usual size for the above reason. The Fordham pant is available for $69.50.

Long Sleeve Shirts

Next up was the blue chambray long sleeve shirt and navy plaid twill long sleeve shirt. Both shirts were comfort able and fit as expected. The shirts feature magnets in lieu of button closures down the front of the shirt as well as the cuffs. The shirts have nonfunctional buttons on the front to give the appearance of a classic dress shirt. Much like the pants, the magnets snap together quickly and easily when closely aligned.

It was a little more difficult for me to pull the front of the shirt together as there is nothing like a belt loop to

“The magnets on the cuffs of the sleeves should be a standard option on all dress shirts. Buttons on the cuffs are annoying for anybody regardless of hand function, and the magnets eliminate this problem entirely.

stick my thumbs in to pull the shirt together. However, once I got the bottom magnet secured, the others fell into place much more easily.

The magnets on the cuffs of the

offers a variety of pants and shirts that are suitable for everything from the office to a day at home. MagnaReady also offers a variety of women’s clothing, including pants, shirts and dresses

Depending on your hand function, you may want to size up on the pants to make closing the waistband easier.

FOR SALE

Permobil X850 Trax Corpus for sale. Call for details 718-642-6420

RT300-SL FES bike. adult leg system, sage 7 controller, with universal stimulation cable, electrodes, manual. Access to web database system. Purchased refurbished for $14,000, used very little. excellent condition. Pictures available. Asking $8,000. Tobie 860-874-4129

Smart Drive MX2+ with push tracker E3 watch. Bluetooth connectivity for manual wheelchair propulsion assistive device. $1,250 OBO. Contact 619-884-8304.

2016 FES 300 cycle- 3 muscle group therapy. Purchased from Restorative Therapies for $13,300. Asking $5,000 OBO. Call 360-461-5569

CushPocket Wheelchair Storage Bag, visit cushpocket.com

Nationwide Wheelchair Van Rentals. For the next time you want to get out, vacation, doctors appointment, or try before you buy. Learn more at www. BLVD.com

Over 1500 wheelchair Accessible Vehicles for sale at one website. A complete selection of New, Used and Pre-Owned wheelchair vehicles from dealers and private parties nationwide. Check it out today. www.blvd.com

VACATIONS

Cape May farmhouse near beach. First floor entirely wheelchair accessible. Sleeps eight. Visit www.beautifullyaccessible.com for more info and reservations.

Ocean-front condo, wheelchair friendly, sleeps six, pool, boardwalk to beach. Rents daily, weekly, monthly. St. Simons Is., GA. bmmk4@frontier.com 419-569-6114.

New Zealand Accessible Vehicle Hire. New Zealand disability vehicles, hand control cars, left foot accelerator cars for hire. Explore New Zealand – we make it easy! We are happy to pass on our former clients’ recommendations of accessible activities and accommodation. See www. freedom mobility.co.nz

ADVERTISE WITH NEW MOBILITY!

To place your classified ad or to get information on advertising rates, call: 800-404-2898, ext. 7253 or email your request to mchintalla@ unitedspinal.org

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SPINOUTS

A TALE OF TWO REHABS

Putting together this issue, we couldn’t help but think back to NM founder Sam Maddox’s Oct. 2018 cover story, “Surviving Modern Rehab: A Tale of Two Injuries.” While SCI life really begins when you get out of rehab, Maddox shows that your rehab experience can have a big impact on your long-term success:

Edie Perkins discovered another key thing at California Rehab Institute: community. She was met there by peer mentors Andrew Skinner and Dean McCabe, who she would see again at Casa Colina’s peer support program. “It was so moving, so motivational to have these guys wheel into my room,” she says. “I always had a sort-of vision that I’d become independent. I hadn’t lost hope. But I had no idea what that looked like. These cool guys zipping around, they were the first people I’d met who looked comfortable and cool in a wheelchair.”

WHAT TO WATCH FOR ON NEWMOBILITY.COM

As we wind our way toward fall, we’ve got an exciting lineup of stories debuting on newmobility.com:

Wheelchair Mushing Leashing a dog (or a couple) to your chair and letting them pull you like a sled may only be an eccentric hobby at this point, but we talk with three wheelchair users who are trying to broaden its sporting appeal.

Vapor X Wheels and Lignorim Handrims Reviewed Vapor Wheels has been offering customizable highperformance wheels since 2020 — Seth McBride reports on how the Vapor X carbon wheels fare for daily rolling. He also tries Lignorim wooden handrims to see how their grip, temperature stability and wet-weather performance compare to conventional alternatives.

NM Live

In her latest episode, Teal Sherer chats with Fatimah Fakhoury, a registered dietician who specializes in nutrition, weight loss and bowel health for people with paralysis. “Eating right can literally make you happier,” says Fakhoury. “It can make your life easier — especially as a wheelchair user.”

Dietician Fatimah Fakhoury (pictured with her husband, Ray) is Teal’s guest on NM Live.

What stands in the Way becomes the Way.

Quinn Brett and Jason Stoffer ride the grueling 600 mile Divide Trail from Canada to Montana, July 2022. Both dedicated road warriors are critical advocates for the U2FP mission, to speed the development of therapies for spinal cord injury.

Join Quinn and Jason at U2FP’s 17th AnnuAl Science & AdvocAcy SympoSium in Salt Lake City, September 23 and 24.

Scan here to register for U2FP’s 17th Annual Symposium and use discount code U2FP2022NewMobility to receive a 50% discount! Then see U2FP.org for full Symposium agenda and roster of all-star scientists, clinicians, companies and community advocates leading the way toward cures.

Photo ©2022 by Robbie Prechtl

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