New Mobility Magazine Mar-Apr 2022 by United Spinal Association

Spasticity Solutions DME Dealers Accessible Skydiving

Rural Life as a Wheelchair User THE MEMBERSHIP PUBLICATION OF UNITED SPINAL ASSOCIATION

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MAR-APR 2022

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CONTENTS Issue 341 - March/April 2022

C O V E R S T O RY

RURAL LIVING 22 This story is for readers who requested an article about how many wheelchair users live their best lives outside the urban landscape — and for everyone else who likes well-told tales. Editor emeritus and longtime farmer TIM GILMER offers a colorful and insightful look at the draw (and the drawbacks) of rural living for people with mobility disabilities.

Cover and Contents Photos by Nolan Ryan Trowe

F E AT U R E S

D E PA R T M E N T S

16 ACCESSIBLE SKYDIVING

4 BULLY PULPIT

JOHN BEER’s reflection on the passing of the instructor who opened the skies to him shows how liberating skydiving can be.

19 THE DEALERS

JOHN LOEPPKY writes about wheelchair users who make a living selling durable medical equipment and what they bring to the profession.

30 LIVING WITH SPASTICITY

Muscle spasticity can feel like an unwelcome intruder has taken over your body. RICHARD HOLICKY searches for the best solutions to evict the uninvited guest.

35 SEATTLE’S KING KHAZM

Daniel “King Khazm” Kogita reigns over Seattle’s hip hop culture as an emcee, poet, artist, mentor and advocate. Profile by IAN RUDER with ALEX GHENIS.

5 BEHIND THE STORIES 6 SHARE 7 UNITED NEWS 8 POSTS 10 PRODUCTS 12 HOW WE ROLL 14 GEAR HACKS 38 DILEMMAS 39 REFRAMED 40 OWN IT 43 CLASSIFIEDS 44 LAST WORD

BULLY PULPIT By Ian Ruder

NEW MOBILITY IS THE BIMONTHLY MAGAZINE OF UNITED SPINAL ASSOCIATION PRESIDENT & CEO: VINCENZO PISCOPO VP OF PUBLICATIONS: JEAN DOBBS

EDITORIAL PUBLISHER: JEAN DOBBS EXECUTIVE EDITOR: JOSIE BYZEK EDITOR: IAN RUDER SENIOR EDITOR: SETH MCBRIDE SOCIAL MEDIA MANAGER: TEAL SHERER EDITOR EMERITUS: TIM GILMER SENIOR CORRESPONDENT: BOB VOGEL CORRESPONDENT: AARON BROVERMAN

CUSTOMER SERVICE Toll-free 800/404-2898, ext. 7203 ADVERTISING SALES MANAGER, CORPORATE RELATIONS: MEGAN CHINTALLA, 718/803-3782, EXT. 7253 AD MATERIALS: DEANNA FIKE, EXT. 7250

PRODUCTION PRODUCTION MANAGER: DEANNA FIKE

CIRCULATION CIRCULATION MANAGER: BEVERLY SMITH New Mobility(ISSN 1086-4741) is published bimonthly by United Spinal Association, 120-34 Queens Blvd., Ste.320, Kew Gardens, NY 11415. Periodicals postage paid at Flushing, NY and additional mailing offices. POSTMASTER: Send address changes to: New Mobility, United Spinal Association, 120-34 Queens Blvd., Ste. 320, Kew Gardens, NY 11415. Subscription rates: $16.95/year; $21.95/year in Canada; $26.95/year International via Airmail. Copyright 2022, all rights reserved. Reproduction without permission of any material contained herein is strictly prohibited. We welcome comments; we reserve the right to edit submissions. Periodicals postage paid at Flushing, NY and additional mailing offices.

www.newmobility.com www.unitedspinal.org 4

NEW MOBILITY

SIDE-TUM Among the many things we have to thank Janet Jackson and Justin Timberlake for, the introduction of the term “wardrobe malfunction” has to rank right up there with Rhythm Nation 1814 and FutureSex/LoveSounds. I’m not condoning what happened during that fateful Super Bowl show, but the fact that it led to the coining of “wardrobe malfunction” definitely merits it a place among 2004’s most consequential events. Defined by Wikipedia and the American Dialect Society as “an unanticipated exposure of bodily parts,” a wardrobe malfunction is something we can all identify with — especially us wheelchair users. The lack of accessible and chair-friendly clothing options, coupled with the complications that come with careless caregivers and the realities of sitting down all day put even the most fashion-conscious of us at high risk for all kinds of unique wardrobe malfunctions. From an unexpected moon sighting because of some ill-fitting pants, to a drain bag tube dangling where it was not supposed to, we’ve all been there, learned and adapted. After 20+ years, those types of faux pas are pretty rare for me, but there is one recurring wardrobe malfunction that has long been my nemesis: the side-tum. For those unfamiliar with side-tum, here’s a true story. Picture me — a tall white dude in a power wheelchair — rolling through a bustling Latino flea market desperately seeking a Justin Bieber piñata (don’t ask). After about 10 minutes of searching, I started to notice everyone’s eyes seemed to be on me. At first, I wrote it off to the public’s general fascination with seeing a wheelchair user out and about on his own. As I noticed more and more eyes, I told myself, well maybe it’s

the wheelchair and the fact you’re one of the only non-Hispanic people within 100 yards. That’s when I finally looked down at my lap and realized that my T-shirt had ridden up to expose my mid-section — perfectly accentuating the right side of my naked quad belly: prime side-tum. The combination of a custom-molded seat and backrest and a fashion world with no concern for making the seated consumer look stylish have put my side-tum on regular display.

“There is one recurring wardrobe malfunction that has long been my nemesis: the side-tum.” That day in the flea market, I laughed and covered up to the best of my ability, but I was definitely a little embarrassed. More recently, my attitude on side-tum has changed. These days, I own it. That doesn’t mean I’m going out featuring intentional side-tum (yet), but if you happen to catch a glimpse when we’re out together, you’re welcome. While my side-tum may be a little pale — I live in Oregon — there’s certainly nothing wrong with it, and there’s definitely nothing to be ashamed or embarrassed about. It’s a part of my disabled life, and I’m here for it. In a world where we’ve sexualized or romanticized pretty much every other part of the human anatomy, why can’t the side-tum get a little love? Just like Justin brought sexy back, I’m working on bringing sexy to the front and side … tum, that is.

BEHIND THE STORIES With Ian Ruder

COLUMNISTS MAT BARTON • JOSH BASILE SHERI DENKENSOHN-TROTT MIKE FRANZ • REGAN LINTON BROOK MCCALL • TEAL SHERER REVECA TORRES • KARY WRIGHT It took a little bit of convincing to sell New Mobility editor emeritus Tim Gilmer on writing this month’s cover feature, but I knew he was the man for the job. “Because I was raised in a small town with no big cities nearby, I identified with the people I was talking to,” he says. “It amazed me how I could understand their situations. I felt a real closeness to them.” The kinship Gilmer felt with his subjects comes through, as does a larger point: “There are stark divisions in this country, but underneath it all, we all share the most important things, and that’s what this story is about.”

With over 22 years on staff, Monica Quinn is the secondlongest tenured member of the New Mobility team. As our web and electronic media manager, she is responsible for keeping our fancy new website looking pretty (and working). She says the transition to the new site “has been a bit of a learning curve” but nothing too crazy as far as adjusting. It’s definitely been a smoother adjustment than when she took over the magazine’s website in 1999. “The chat room was full of people saying the worst things about everyone,” she says. “Nothing but adults behaving badly.” These days she prides herself on avoiding the drama. “I strive to make myself boring,” she jokes.

This issue’s feature on wheelchair users who sell durable medical equipment is John Loeppky’s second for NM. “I pitched this story because I’m always interested in these spaces where lived experience of disability is — or in some cases is not — prioritized,” he says. “I happened to know of wheelchair users doing this work and wanted to connect the stories of both the U.S. and Canadian markets.” Loeppky says researching the story and talking with the dealers he connected with proved enlightening. “To have someone challenge traditional thinking on wheelchair measuring and talk through current ways of measuring was really valuable,” he says.

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.

CONTRIBUTORS KIM ANDERSON • CHRISTIAAN BAILEY 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 ASHLEY LYN OLSON • KENNY SALVINI ERIC STAMPFLI • MITCH TEPPER ANTHONY TUSLER • KIRK WILLIAMS LOREN WORTHINGTON

WEB PARTNERS BACKBONES CURB FREE WITH CORY LEE PARTNERSHIP FOR INCLUSIVE DISASTER STRATEGIES ROLLIN’ RNS ROOTED IN RIGHTS SPINALPEDIA SPIN THE GLOBE WHEELCHAIR TRAVELING FEATURED WEB PARTNER: SPINALpedia is a social mentoring network and video archive that allows the spinal cord injury community to motivate each other with the knowledge gained from individual experiences. spinalpedia.com

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

MARCH/APRIL 2022

Emergency Hacks Repurposing Used Gear Life in Russia

“I’m so glad the world gets to witness what you’ve created.”

THE MEMBERSHIP PUBLICATION OF UNITED SPINAL ASSOCIATION

PEOPLE OF THE YEAR: THE REALITY POETS

JANUARY-FEBRUARY 2022

People of the Year: The Reality Poets The Journey Continues: A deep bow to you all, my friends! What a journey. I’m so glad the world gets to witness what you’ve created, how you have surmounted every obstacle. Thank you for sharing your story! Dorothea Biba Naouai Newmobility.com

They Deserve Better: I first glimpsed at this and immediately thought, why are these people even in a nursing home? None of them should even be there. I was disheartened just by knowing this fact. As I continued to read, it made sense, but it made me even sadder. This is a very enlightening story, and more people of power and influence should take notice. Theo Braddy LinkedIn

Life, Love, Death and Disability in Russia

It’s not Much Better Here: How splendidly you have written about a terrible situation. Your tenacity and resourcefulness are carrying you through. I am a spinal cord injured quadriplegic, and you have described exactly the way I feel when I am in bed, trapped and completely helpless, even to turn or scratch an itch. My total care is by my long-suffering partner of 29 years who came to me when I first needed help and stayed. So far, we have eluded COVID-19. But 6

NEW MOBILITY

I must hire others as if she should, by chance like your parents, suddenly disappear, I would be lost and probably would die very soon without help to even get me water to drink. I have no friends or even neighbors nearby to help me. My family, some who have had COVID-19, are over a thousand miles away and cannot come to me to my aid. Fortunately, we do have much assistance for the disabled in this great country, the United States of America. But there is no real safety net for those of us like you and I, totally dependent on our own resources for help so that we can be sustained in our own homes. Ronald W. Hull Newmobility.com

Please Remain Seated

Not Funny: I am a long-time reader of NM and have always appreciated the honest, helpful, mind-boggling, sometimes irreverent tone of this magazine. Great job settling into the shoes of Tim Gilmer, Ian. You have put your mark on the magazine, and I like it! But I have not enjoyed some recent episodes of “Please Remain Seated.” I find them offensive. I understand the frustration over nondisabled people’s use of accessible toilet stalls, but the term douchebag is insulting and unacceptable. There is no need to degrade women by linking a women’s intimate care procedure to disgust. And who thought it was a good idea to convey the idea that a kid’s dad talks about hookers? Please help your cartoonist to find

newmobility.com

JAN-FEB 2022

other ways to convey his humor. In the meantime, please keep the excellent content coming. Carrie Larson Via email

In Case of Fire … Take Stairs?

Hotels are not Ready: Nice story,

but a possibly more interesting one would be advice for travelers and others that are visiting in multi-story buildings. In my experience, a not-so-excellent way to get that “deer in the headlights” look is to ask the hotel desk clerk that is checking you into an ADA room on an upper floor what the fire evacuation plan is for you as a wheeler who can’t do stairs. I’ve gotten about a 90% fail rate on getting an answer. Arthur Torrey Newmobility.com

The Adventurer Leading Government Research

You’re a Trailblazer: If you make it more accessible for yourself, hopefully, it will get noticed by other people, and they will do it too. I keep thinking if more people are out and about doing this kind of stuff, more people will realize that they can do it too. Larry Pagel Facebook

NEWS FROM UNITED SPINAL

UNITED SPINAL’S CHAPTERS AND MEMBERS ARE #STRONGWHEELED TOGETHER United Spinal Association unveiled its #StrongWheeled Together Campaign in February as part of its ongoing efforts to erase the stigma of disability and unify its #strongwheeled community of wheelchair users and people with mobility disabilities. The campaign builds on the strength of shared connections and personal stories of United Spinal’s diverse membership. One thing each of United Spinal’s 50 chapters and nearly-60,000 members have in common is fighting for everyone with SCI/D to live the life they choose, as they work together toward common goals. “It’s about recognizing people with spinal cord injuries and disorders as valuable members of society and ensuring that we have a seat at the table when policies are created,” says United Spinal CEO Vincenzo Piscopo. “And that we have a say in the development of

MEMBER BENEFITS unitedspinal.org United Spinal Association is dedicated to enhancing the quality of life of all people living with spinal cord injuries and disorders (SCI/D) by providing programs and services that maximize independence and enable people to be active in their communities.

BENEFITS INCLUDE: Personalized Advice and Guidance Peer Support Advocacy and Public Policy Veterans Benefits Counseling Accessibility Advocacy Local Chapters

new technology, pursue opportunities, receive quality healthcare — and that we can live

New Mobility magazine

independently, travel freely and fully participate in our communities.”

Informative and Educational

The campaign emphasizes that while we may be at different points in our journey toward greater independence, we all gain strength from each other’s lived experiences and

Publications

personal stories. Or, in other words, we’re #Strongwheeled together.

Ongoing Educational Webinars

United Spinal invites everyone to be a part of the Strong Wheeled Together campaign and

Special Offers and Discounts from Partnering Organizations

embrace diversity and inclusion. Go to Unitedspinal.org and follow United Spinal Association on social media to participate and join the movement.

United Spinal’s New Job Portal is Live United Spinal is pleased to announce that its new job portal is now live. Job seekers will find resources, trainings, options to connect with a career mentor, and open job postings. Those who are employed can join and mentor a job seeker who might be needing encouragement. “In the current job market, it is a fantastic time to find a new job,” says Michele Lee, the program’s director. “The time is now, so don’t hesitate to begin your pathway to employment.” The portal is easy to use. Go to unitedspinal.yourjobpath.com and put in the type of job you’re looking for and where you want to work. To test it, we typed IT and New York City and pages of entries popped up. We clicked on one that looked interesting, and in addition to taking us to a page with all the info we needed to apply, it prompted us to sign up for United Spinal’s Pathways program — think of it as Indeed for wheelchair users — to facilitate applying for many jobs. This latest tool is part of an array of employment resources offered by United. To see

Membership in United Spinal Association is free and open to all individuals who are living with SCI/D, their family members, friends, and healthcare providers. Visit unitedspinal.org or call 800/962-9629. United Spinal has 75 years of experience educating and empowering individuals with SCI/D to achieve and maintain the highest levels of independence, health and personal fulfillment. We have 50+ local chapters and 190+ support groups nationwide, connecting our members to their peers and fostering an expansive grassroots network that enriches lives.

what else there is, go to unitedspinal.org/pathways-to-employment/. Also, be sure to join United’s Pathway to Employment LinkedIn group at linkedin.com/groups/12585036 and stay up-to-date on events and job postings. MARCH/APRIL 2022

POSTS

NM Writer Releases First Novel Author Jerry McGill has graced the pages of New Mobility twice, most recently penning a profile of Push Girl and dancer Auti Angel last March. He burst onto the scene in 2012 with Dear Marcus, a powerful memoir looking back at the senseless violence that left him paralyzed and the journeys and realizations that have followed. In December, he released his first novel, Bed Stuy: A Love Story, which focuses on many of the same issues and emotions McGill so eloquently tackled in Dear Marcus, but from a whole new perspective. McGill worked on the novel for over eight years. “It’s amazing how a work can change over time,” he says. “What I started with looked very different than what I finished with, but I’m happy with it.” Fans will be glad to know he is working on a second novel. Find both books at your local bookstore or on Amazon.

LEGO Updates Disability Representation Dutch toymaker LEGO hasn’t exactly been on the cutting edge of disability representation. If you ignore a puny push-only wheelchair built in a 1975 hospital set (as you should), the company didn’t release its first true wheelchair until 2016. That set, 60134, is only available through resellers these days and costs upward of $60 — three times what it did when it was on shelves. That has left wheelchair users looking to build mini-versions

Jerry McGill

of themselves. But last year, LEGO released a city

Give a Hoot for Adaptive Resources We stumbled on TechOWL through its catchy TikTok videos highlighting adaptive tools and solutions, and the further we went into the owl’s nest, the gladder it made us. TechOWL is the Assistive Technology Act Program that serves the entire state of Pennsylvania, but its resources are invaluable for anyone looking for adaptive help. The library of TikTok videos runs the gamut from reviews of adaptive tools to howtos, and the kind of random fun TikTok is known for. Its full website offers even more, including a lending library for locals, 3D printing guides, training and more. The program will even 3D print devices for you if you qualify. Find it on TikTok at @techowlpa and online at techowlpa.

NEW MOBILITY

skate park set featuring a WCMX figure, and on Jan. 1, LEGO released its Series 22 Minifigure set with 12 new figures, one of which is a wheelchair racing champion. The good news is the individual Series 22 figure packets only cost $4.99, the bad news is there’s no easy way to tell which of the 12 figures is in the bag. You can buy them at LEGO. com or your local LEGO dealer. If you’re interested in more on LEGO’s lackluster history with disability representation, check out brickset.com/ article/21709/a-history-of-lego-wheelchairs.

The Accessible World is a Click Away

The Loop+ uses realtime data aimed at helping you prevent pressure injuries and scoliosis.

Planning your next accessible vacation just got a little easier thanks to TravelAbility’s Accessible Destinations portal. The portal offers a curated collection of accessible web pages for over 120 destinations in the United States, Canada and Mexico, supplemented by articles and listings from disability travel bloggers and other reliable sources. The portal is the culmination of 18 months of research and outreach by the TravelAbility team. They checked out the accessibility of 245 destinations and found that only around 50% had official web pages focused on accessibility. TravelAbility founder Jake Steinman says the portal is part of the organization’s ongoing efforts to improve access across the travel industry while educating destinations and industry leaders about the needs of people with disabilities. “While the ADA provides some baseline, albeit woefully inadequate, physical accessibility, there’s no ADA for information,” he says. “For travel at least, we felt this was information that destinations could provide, and we could organize all on one website to make it easy to find.” He urges disabled travelers to check back regularly as his team constantly grows the portal. Roll into the portal and see for yourself at travelability.net/accessible-destinations.

Pressure-less Pressure Monitoring A new pressure mapping product gives you

Mastering MS

the power to get real-time data aimed at help-

Award-winning filmmaker and 2014 New Mobility Person of the Year Jason DaSilva’s new documentary, Predicting My MS, is a 30-minute short that chronicles DaSilva’s quest to understand why he got primary progressive multiple sclerosis. DaSilva used the pause brought on by the pandemic to reach out to family members, doctors and researchers to understand the disease better and any possible causes in his personal history. The result is a fast-moving, informative and optimistic watch for anyone interested in MS or DaSilva’s work. Without spoiling anything, one of the main takeaways is the importance of living your life to the fullest and pushing through adversity. “The big thing is it just reiterated that it’s important to keep on going,” says DaSilva. As his MS has progressed, DaSilva has done just that. Since the 2013 release of When I Walk, he has directed more than a dozen documentaries and short films. He is currently working on When They Walk, the final film in a trilogy focusing on his life with MS. Predicting My MS premiered in February on the PBS science series NOVA. Watch it on NOVA’s YouTube Channel at youtube.com/user/NOVAonline or find out more about DaSilva and his work at axslab.org.

ing you prevent pressure injuries and scoliosis. The Loop+ utilizes mobile pressure mapping technology to monitor your sitting habits while giving you easy access to track them via your iOS devices. The Loop+ sits under your cushion and lets you continuously monitor pressure points in real-time, track how long you have been sitting and log activities to see how pressure changes correlate with your daily routine. You can view a summary at the end of the day and make changes to your seating position or pressure relief program as needed. The Loop+ can also provide data for clinicians when evaluating seating options for their clients. The pressure-sensing mat is water-resistant and can be cleaned with a damp cloth. It features a 36-hour battery life, and its small controller can be attached in an unobtrusive place on your wheelchair. The Loop+ can be leased for three weeks for $435 or purchased for $1,200. A clinical package is available for $1,950 that includes a license allowing use with multiple clients, a training session, and one year of customer support. The Loop+ is available in pediatric and adult sizes. For more information, visit the Loop+ website.

MARCH/APRIL 2022

PRODUCTS By Michael Franz

DEZZIV WHEELCHAIR BRAKE CLASSIC Finding new equipment to make pushing a wheelchair easier is always exciting to me. As a quad who uses a manual chair with power assist wheels, I try to take advantage of any opportunity to remain independent in my mobility. The Wheelchair Brake Classic is a new product from the Slovenian startup DEZZIV intended to make it easier to go up and down slopes and, for those who are strong enough, to make pulling oneself up a flight of stairs easier. I was able to try the brakes out for a few weeks and found positives and negatives. DEZZIV’s brakes are comprised of a regular brake handle that locks and unlocks a brake wheel. The brake wheel makes contact with the wheelchair tire and a red switch handle that can be moved up or down on the tire to prevent the wheelchair from rolling forward or backward, respectively. To work properly, each brake needs to be installed in a precise position on the frame using the clamps that come in the installation kit. This proved trickier than it sounds. The challenge is positioning the brake DEZZIV’S new Wheelchair Brake Classic is designed to help users ascend and wheel in relation to the wheelchair wheel. In descend steep terrain, including stairs. the unlocked position, the brake wheel needs to be 4-6 millimeters away from the tire for the the brakes can be set to a neutral position and function as hill-stopping mechanism to function when the red switch regular brakes. When engaged, they hold as tightly as my handle is engaged. The entire process required two visits regular wheel locks. from my wheelchair guy to install the brakes and make Aside from the enhanced basic braking, DEZZIV’s adjustments. If you are installing the brakes yourself, be marketing touts its product’s ability to make it easier for patient and give yourself plenty of time. wheelchair users to pull themselves up a flight of stairs. The DEZZIV Wheelchair Brake Classic’s main function The ads show users pulling themselves up stairs with the is stopping the wheelchair from rolling forward or backred switch handle in the up position. As a C5-6 quad, I ward down a slope. With the red switch handle in the up don’t have the function and strength to independently position, the brakes stopped the wheelchair from rolling test this, but I did have an aide pull my empty wheelchair forward while going backward up a slope. This is not someup the staircase in my house. The brakes did hold the thing I do regularly but for those that do, it works well. wheels and prevented them from rolling forward. This was When the switch handle is flipped to the down position, obviously without my weight in the chair, but I do have it prevents the wheels from rolling backward while going forwards up a slope. This is a much more common situation, heavy power assist wheels. The brakes are likely useful for and the brakes work well when needed. For general use, someone with lightweight wheels and the strength to pull 10

NEW MOBILITY

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themselves up stairs, but I couldn’t verify their function in this scenario. While testing the DEZZIV brakes, I did encounter a few issues. The most annoying issues related to the positioning of the red switch handle during normal use. When disengaging the wheel locks, the red switch handle would often spring into the up position preventing the wheel from rolling forward. On several occasions I caught myself unlocking and rolling backward only to find myself stuck when I pushed forward. I would then have to move the switch handle into the neutral position before moving again. This problem improved somewhat after making some adjustments but was consistent throughout the testing period. There were also several occasions when I was pushing my chair normally and one of the switch handles would engage, stopping the wheel, and spinning me out. This happened a few times on flat surfaces but happened more frequently when going over bumps. As the brakes are a new product and unfamiliar to me and my installer, an installation error may have

The engaged Wheelchair Brake Classic with the adjustable red switch of the brake wheel.

caused these problems, but it happened on both sides and persisted after suggested adjustments were made. Another problem arose when changing the wheels on my wheelchair. I visited Florida with the DEZZIV brakes on my wheelchair and realized that my beach wheels would not fit with the brakes. I almost never change the wheels on my chair, but those who change wheels regularly may encounter the same problem I did with my beach wheels. If the DEZZIV brakes worked perfectly, I would be able to give them a stronger endorsement. However, the problems I encountered were annoying enough that I would only recommend them to people specifically looking for help going up stairs. As mentioned, the brakes are a brand-new product, and it is possible that the problems I had were caused by an installation error. The DEZZIV Wheelchair Brake Classic is available for about $320 and can be shipped worldwide. For more information about the Classic model or the other models offered by DEZZIV, visit dezziv.eu.

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MARCH/APRIL 2022

HOW WE ROLL

Z U M BA I NST RUC TOR A N D WOM E N ’ S A DVO C AT E

Monique Stamps

Monique Stamps used her platform as one of the few wheelchairusing Zumba instructors to raise money to support women with spinal cord injuries. Then, when a car accident left her needing support, the Zumba community returned the favor.

Feeling the Zumba Love After two pregnancies and 20 years as a wheelchair user, Monique Stamps, a 43-year-old C6-7 quadriplegic, had put on 300 pounds and didn’t feel like herself. Before her injury at 16 from a car accident, Stamps had always been a small, healthy woman. “Throughout both pregnancies, I didn’t eat the healthiest, to be honest — pizza, hot dogs, and I wasn’t big on veggies. I just ate what the babies and I craved,” she says. Motivated to change, Stamps joined her local YMCA. While working at an adapted bench press machine, she heard some salsa music and saw about 50 women having fun. “It sounded fun, so I poked my head in the door and saw a bunch of ladies in the class dancing and having a great time,” she says. “The instructor saw me in the back and motioned me to come on in and not be shy.” She had stumbled into a Zumba class. Zumba was founded in the 1990s by Colombian aerobics instructor Beto Perez. It melds salsa, merengue, cumbia and reggaeton into a high-energy dance workout. Although Stamps had danced before her injury, she was initially unsure how to respond, so she just started using her arms to repeat the gyrating motions the women were doing with their

WHEN DID YOU USE HUMOR TO GET THROUGH A SITUATION? When my aunt saw me pregnant and asked me, ‘How did you manage to spread your legs?’ All I could do was laugh at that. 12

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feet. She was hooked — so much so that she began attending class once a week, and soon after, twice a week. She didn’t even notice the pounds melting off because she was having so much fun. “I fell in love with it,” she says. “At that point, I didn’t even really think about my weight. I was just having a good time. I didn’t feel judged in any way as the only person with a disability in the class. I was among the people and the music. I had a sense of freedom that I never had before, and I was instantly part of a family.” Stamps got so swept up in what the Zumba community calls “Zumba Love” that in 2013, she became an instructor teaching Zumba Gold — a low impact, seated and half-speed version of Zumba for seniors and people with disabilities. “In the future, I hope they will use instructors in wheelchairs to help train the trainers because I had to teach myself verbal cues like ‘Twist the lightbulb,’ ‘Jellyfish arms,’ or ‘Shimmy your shoulders,’” says Stamps. “The training is geared toward seated people who could move, rather than people paralyzed from traumatic injury.” Later that year, at her first ZumbaCon, Stamps was randomly invited onstage by Perez himself. A video of them went viral. “I was

CAN YOU RECALL A MOMENT WHEN YOU REALIZED YOU COULD HANDLE LIFE WITH A DISABILITY? My second car accident. I could’ve easily called it, but at the end of the day, no matter what I’m going through, I’m still Mom.

Women Embracing Abilities Now Monique Stamps explains the circumstances and events that inspired her to create the WEAN support group.

“ terrified. All that attention was not my thing, but I got a ridiculous amount of Facebook friend requests out of it,” she says. That following helped Stamps hold successful Zumbathons to raise money for the support group she founded — Women Embracing Abilities Now — to help mentor women and girls with SCIs (see sidebar). The tables turned in December 2013, only a few months after she got her instructor license and met Perez when a car accident caused significant injuries to both her legs. The Zumba community helped Stamps get back on her wheels financially by raising $50,000. “Zumbathons were going simultaneously in a few states. Plus, donations were collected all over the world, and the Zumba head office made a huge one. Without them, and already with an SCI, I don’t know what I would have done,” she says. “The Zumba community has given me so much that had I not felt those salsa rhythms and poked my head in that class, I don’t know where I’d be now.”

IF YOU COULD CHANGE A PIECE OF LEGISLATION, WHAT WOULD IT BE? We have the ADA, but it’s not being enforced.

“

Monique Stamps is shown with members of Women Embracing Abilities Now, the support group she created.

I was injured at 16, and being from a rural area, I didn’t know anyone with disabilities. It was especially hard being a young girl with a disability. I mean, it might be too much information, but I was like, ‘Oh god, what do I do if I get my period?’ I’m not saying men don’t have concerns and things, but it’s a lot different being a girl. I had to figure it out alone, so I went to college, majored in social work, and that’s what got my foot in the door at a Center for Independent Living. That’s when I started noticing the differences in the lifestyles Stamps sits between her daughter, Camryn, and between women her son, Jordan, in front of Camryn’s dorm at and men. More Norwich University in Vermont on drop off day. often than men, women with disabilities are not encouraged to pursue higher education or encouraged to go back to work and are judged very harshly for having children. This is what I experienced, and I found other women were experiencing the same thing, so I decided to start a program to stop this crap.

WHY DID YOU JOIN UNITED SPINAL? It was a great way to connect with others with SCIs. I just wanted to be in the know as far as policy changes that affected all people with disabilities.

MARCH/APRIL 2022

GEAR HACKS By Seth McBride

TOTALLY NORMAL POWER WHEELCHAIR HACKS A lot of the time I get annoyed with the internet, but every once in a while, something comes along that makes me say, ah yes, that’s what this is for. It happened recently when NM’s editor, Ian Ruder, told me to check out a YouTube channel called Totally Normal. Totally Normal, youtube.com/c/ WeirdPDX, is run by a guy named Dan Payton. He’s a power wheelchair user after a TBI who has incomplete C7-ish function and a knack for making DIY seem doable no matter what he’s modifying — a full-size touring bus, one of the 24 used power chairs he currently owns, consumer electronics or just about anything you can think of. He has videos of himself pulling apart his brand new Permobil F3. One of him wiring a Honda generator on the back of an old Quantum 6000 to make a Dan Payton “hybrid electric” power wheelchair. Another of him and a friend unboxing and testing a Chinese folding power chair that his friend bought from Alibaba (see sidebar). The first power chair Payton can remember hacking is a Pride Jazzy 600 mid-wheel-drive model that he bought off Craigslist for $400. That last part is important. Payton’s rule number one for power chair hacking: “Just make sure you’re not using your only chair.” Better still, until you’re confident in your abilities, only mess with something that won’t make you sad if it breaks. Finding a secondary power chair to 14

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mess around with doesn’t have to be difficult or overly expensive. Payton says he used to get most of his from Craigslist and now mainly uses Facebook Marketplace. He’s also found chairs at pawn shops and even yard sales. “EBay can be tricky, because you can’t verify the chair works before you get it,” he says. “Usually, I’d only recommend buying a chair if you can actually go test it out and

make sure it moves.” Another thing to consider is the cost of replacement batteries. “I don’t care if they say the batteries are brand new, 90% of the time the batteries will be bad no matter what,” he says. Factor needing new batteries into your budget before you buy, and your only surprise should be a good one. There are a lot of used power chairs on the market and they don’t hold their value. Even if

Wild World of Alibaba If you have never looked at the mobility equipment section on AliBaba or AliExpress, do yourself a favor and dive in. It’s fascinating. The Alibaba sites are like a mishmash of Amazon and Ebay combined with a side of industrial-scale manufacturing. Chinese manufacturers sell products directly to consumers, or wholesalers, all over the world. They have everything. A tennis wheelchair from $153$205? They have that. A remotecontrolled folding power chair for $485? Check. A device that looks suspiciously similar to a Smart Drive for $779? Yup. A pair of Spinergy knock-offs complete with tires and handrims for $99, minimum order of 50 pairs? Yes, those too. Warranties and returns aren’t really a thing, but it is possible to purchase functional products that look and operate more or less as advertised. If nothing else, it’s an entertaining way to spend an afternoon as you ponder whether you want to play DME roulette. Visit alibaba.com or aliexpress.com.

a chair is in great condition, you shouldn’t pay more than 20% of its retail value. And for something as your backup/hackable chair? “You should be able to get something functional for less than $1,000.” A complex, near pristine chair can run to $5,000 or more, but Payton says that for a used chair, anything being sold for over 20% of retail is overpriced.

Mechanical Mods

That first chair Payton worked on was a relatively simple modification. “I put giant tires on there because I wanted to go to the junkyard, and the crushed rock they use at the junkyard doesn’t work with normal wheelchair tires.” He removed the front casters from the Jazzy 600, then used pieces of flat metal to make adaptors and bolted on wide, knobby ATV wheels to replace the drive wheels. He bought oversized casters and forks from Harbor Freight — surprise, surprise, these did not hold up — and swapped them onto the back. The results weren’t pretty, but they did let him move around the junkyard. Other mechanical mods Payton has tried over the years include putting a pair of Honda mini-dirt bike tires on a Permobil C300 (see “Building the $91 Off-Road Power Chair”) or swapping more powerful motors onto the same C300, which is all good until you get overconfident and the chair spits you over on the lawn. He’s upgraded the suspension on old power chairs, added custom LED lighting to his Permobil F3 and built new foot plates for an Omegatrac.

Fun (and Danger) With Programming

From mechanical mods, Payton quickly learned about programming the electrical systems in his chairs. Once you attach the controller to a computer — sometimes this is as simple as copying the settings onto a SD card, and sometimes it can require a dongle costing as much as $650 — you can tweak everything about a chair’s settings from forward, rear and turning speed to acceleration and braking levels to seat recline or leg rest movement. If you have a seat elevator, you can change how the chair moves when you’re up in how-do-you-do mode.

Starter Guide to ‘Totally Normal’ Videos Payton has hundreds of videos on his YouTube Channel. In addition to the sheer volume of in-depth content he posts, Payton’s videos stand out from the pack for the ingenuity of his hacks and creations and the knack he has for making complex system and processes accessible. Here are a few of our favorites to get you started: • Shop Class Episode 1 – Why Are Power Chairs So Complicated? Payton breaks down a Quickie to give an indepth look at the various systems within a typical power wheelchair and why they’ve gotten so complicated over the years. youtu.be/BzUbcMByx0A • Mega Vlog 504 – Remote Control Wheelchair! How Payton hacked an old Manufacturers and DME dealers don’t want people programming their own wheelchairs because, well, they don’t want to kill their customers, get sued or cover repair bills. Power wheelchairs often have powerful motors, and tweaking settings could quickly send you crashing into or over all manner of objects if you’re not careful. “Knowing enough to be dangerous is definitely a thing with wheelchairs,” says Payton. Depending on the chair, you can fry the motors if you mess with the wrong setting or you could lock it out, leaving it unwilling to move at all. So: Tweaking programming is a do-atyour-own-risk endeavor. But so is bombing a steep hill in your

power chair to be able to control it with an RC remote. In addition to being a lot of fun, this video is a good example of Payton’s technical and problem-solving abilities. youtu.be/vFT1LmLqYXY • Mega Vlog 513 – Building the $91 Off-Road Power Chair. How to make a Permobil C300 off-road capable with a few quick hacks and inexpensive tire mods. youtu.be/sa0kdiGgPao • Chinese Folding Power Chair Review! – Want to see what one of those chairs from Alibaba looks like for real? Here you go. Payton helps a friend unbox, set up and test drive a folding power chair bought off the internet. youtu.be/HNtqLRmPINg

manual chair, and why should manual chair users get to have all the fun? If you want to be able to power drift through parking lot puddles or spin around so fast you hurl, hey, do your thing. Payton recently found what he calls a “magic box” on his Permobil chair. It’s a port for an input/output module that lets you plug in up to eight different components. “You can do some really crazy stuff, like drive an RC car from your joystick or remote control your chair using an RC controller,” he says. Yes, you read that right. Payton has a video of himself using a standard radio controller to drive an empty wheelchair around his house. Now that’s a gear hack. MARCH/APRIL 2022

I FEEL SO ALIVE: Accessible Skydiving and the Guy Who Made It Happen for Me

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n a cold, still morning, camped on a lake, with dawn weak in the sky and autumn bittersweet in the air, I woke to the message that Nathan was gone. I was shocked. Nathan Dexter took me on my first skydive. That day had been electric, one of the most exciting of my life. Nathan was electric. How could he possibly be dead? Nathan and I jumped together for Skydiving for MS. For 19 years people with MS and their allies took to the air over Chicagoland Skydiving Center in Rochelle, Illinois. What started as an annual benefit for the late Ken Adams, expanded into one of CSC’s signature events, raising over $250,000 for the National Multiple Sclerosis Society. I touted it as “The Most Exciting Fundraiser in the World,” and the epic raffles and after-parties definitely were. In addition to fundraising, the event succeeded in its mission of getting disabled jumpers in the air, growing from one or two to dozens. I was one of the many who got hooked — over the years I jumped 11 times.

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B E E R

I loved skydiving, but more than that I loved skydiving with Nathan, the instructor for my first four jumps. Of the many lifelong friends I made at CSC, he was the one I most looked forward to seeing. I’d roll out of the minivan with butterflies. The plane revving on the airstrip ... the scheduling orders crackling over the PA ... the outfitted skydivers rushing to and fro … all on the move. But none of it was real, not until I’d heard Nathan’s jolly, swaggering pirate’s laugh. Like him, it was larger than life and full of gusto. The adventure had begun. “My most potent memory of Nathan is that raspy laugh that would just carry through the hangar,” says Becky Johns, former events and marketing director at CSC and a student of Nathan’s. News of his death by heart attack in 2020 “sent a wave of shock through the community.” He was 48. “He was a big personality,” says CSC owner Doug Smith, a close friend and competition teammate of Nathan’s. “You know, he could sometimes be abrasive to people because he’s

so loud. But you spend five minutes with that guy and you re- arms from whipping in freefall. From the tarmac they hoisted alize that it’s purely his passion for the sport, for sharing fun me up to the floor of the plane. I was a lot of work, and year after year he was there for all of it. experiences with people, that was driving everything.” Once a year, he poured all that energy into opening the skies to me. For someone like me who spent his days in a room peck- FREE FALLIN’ ing a keyboard, this was mind-blowing stuff. He exemplified an Climbing to 14,000 feet takes a noisy 15 minutes in the prop industry of instructors, facility owners and equipment makers plane. On my first jump, the air was filled with adrenaline, willing and able to adapt safe access for people of all abilities. anticipation and war-whoops from a couple dozen jumpers Skydiving for MS was a big day, and I needed a big instruc- inside. All along, Nathan checked and rechecked the harness, tor. Nathan was strong enough to do everything with a 6-feet- yanking straps tighter and tighter as there could be no space 2-inches-tall quad strapped to him. After 19,500 jumps he had between us. From the jump seat I got a bird’s-eye view of the more than enough expertise to introduce scores of paraplegics world falling away through the clear Plexiglas door. and quadriplegics to skyFinally, the door jerked diving. Every year he and open, rolling overhead John Beer and instructors Nathan Dexter and Jacko the folks at CSC brought like a garage door. Cold Jackson are fired up after another successful jump. some new improvement to air and prop-noise rushed inside. A half-dozen forour setup. It was incredibly mation jumpers slapped welcoming. hands and lined up inches He’d drip sweat as he away in the open doorsuited me up in the summer way, and in the blink of humidity, weaving a cord an eye, vanished outside. through my jump harness That was our cue. With and pulling tight. A halfgrab bars, Nathan pulled hour later I’d come rolling himself to his feet and out of the hangar trussed trudged us to the threshlike a pot roast to keep my

ational Skydiving Championships competitor and T3 paraplegic Jarrett Martin, and Afghanistan War veteran and triple amputee Todd Love are both certified advanced free fall solo skydivers, who push the bounds of performance and equipment design and show the limitless possibilities of adaptive skydiving. They have hundreds of jumps between them and make it look easy. But how is adaptive skydiving for first-timers? Like so many things when you are disabled, it’s highly doable as long as you do your homework first. “There’s not a barrier for [people with disabilities] to experience a tandem skydive,” says Shanon Searls, director of sport promotion for the United States Parachute Association, the governing body setting professional standards for over 40,000 members and 200 group member skydiving facilities, or drop zones. “Some DZs are more equipped than others or feel more ready or more trained than others. It does take special training and equipment to make sure that the jumper can be as safe as possible, knowing that it’s still a risky sport for anyone who goes up.” My experiences with Nathan and “Jacko” Jackson at CSC were always smooth and showed that not every jump is the same. “Each instructor will have their preferred method and tools of the trade,” writes Jackson from Dubai, where he is an instructor. “Wind conditions, passenger size and instructor’s abil-

ity will all factor in choosing a slide or stand-up landing. With smooth, steady wind conditions a safe stand-up landing is easily achievable, but with no wind or turbulent conditions, most instructors will usually opt for the slide landing.” Jackson brought his own innovation to the tandem — after takeoff, he started duct-taping my feet on top of his. He aimed to bring us sliding in on our rears. Both Searls and Jackson recommend asking DZs how many people with disabilities they’ve taken on tandems, what disabilities they’ve accommodated, and how long they’ve been doing so. The USPA will refer people with disabilities to DZs qualified to take them up. Write sportspromo@uspa.com to reach Searls. She says a list of qualified DZs will be available on the newly redesigned USPA.com website in 2022. For those who want to sample the experience a little closer to the ground, the iFLY chain of indoor skydiving facilities rolls out a red carpet to people with disabilities. On its All Abilities Nights, anyone can fly with instructors trained to accommodate their access needs. Although people with disabilities are encouraged to attend All Abilities Nights when staffing is best-suited (and event prices lower), jumps can also be made on other dates. When reserving, specify accessibility needs or concerns. Customers can also speak to the instructor directly. Find the nearest iFLY at iflyworld.com.

Find Your DZ

MARCH/APRIL 2022

old like some two-headed, eight-limbed science experiment. Looking down on the earth 2.5 miles below — where the highway looked like slot racing and the farmland an endless quilt of green and gold squares — here was where I thought I’d feel fear. But there was no time for that. He pulled us through the cargo door and we were gone. The first several seconds we tumbled in a kaleidoscope of blue sky, white clouds, the airplane, the earth, sky, clouds, airplane, earth, blueness. Surprisingly, I didn’t feel dizzy. Nausea is rare, Nathan told me, adding that in all his jumps he’d seen only one person get sick. My mind was busy processing the swirl of images. It is rapid flight. In one minute of freefall, you drop 10,000 feet through tornado-level 120 mph winds. The photographer flying alongside with his helmet-mounted camera was an excellent reminder that I was there to enjoy myself and not get all serious – besides, if I didn’t smile pretty for the camera, my skin would’ve been looser, and my cheeks would’ve flopped all goofy in the wind. Then, Nathan changed the game by pulling the chute. Under the canopy of the parachute, the world turned serene. Moments earlier, my ears boomed like a volcano, but now it was quiet enough to have a conversation. “You just completed your first freefall, my man,” he said. We turned this way and that, as he pointed out landmarks. It was the first time in years I’d moved around without being tied to a piece of machinery. In the field below I spotted a golf cart with people beside it, and in that cluster was a black dot I realized was my wheelchair. I called Nathan’s attention to it. “Keep me out of it as long as possible,” I said. I mean, I love my wheelchair and all, but we’re cool about seeing other devices like airplanes and canopy rigs. Nathan began shifting me higher in the harness, so that his feet were positioned below mine. It was ingeniously simple: His feet would simply reach the ground first. The ground got closer and closer. The grass rushed by. People ran to intercept us. Here we go, I thought, gritting my teeth. The bad news is they didn’t catch us. The good news is they didn’t need to. Nathan’s feet touched down and he sat back in the grass — 14,000 feet, 120 mph, and it ended with the lightest “plop.” Each and every time, Nathan set us down gently. After five years, a bad back would force him to hand me over to another instructor with 25,000 jumps of his own and experience taking up people with disabilities. 18

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TOUCHING THE CLOUDS

July 3, 2021 was a perfect summer’s day in Rochelle. Over the course of the day about 100 people gathered at CSC, some from the area or Chicago, others from as distant as Minneapolis, Texas and Arizona. They included family members of Nathan’s and those he had trained, tandemed and jumped with over the years, including some from Skydiving for MS. It was the third and final tribute, after similar events in California and Arizona, other skydiving communities where Nathan left his mark. “So many people came and said I wouldn’t be skydiving today if it weren’t for Nathan Dexter ... people came out of the woodwork that I had not seen in 10 or 15 years,” says Smith. “It was a great vibe.” At sunset a plane took off for the day’s final flight, carrying many of his closest friends from CSC, including Smith and Johns. The climax was an “ash dive,” when Lisa Dexter, Nathan’s wife, released a portion of Nathan’s ashes while freefalling in tandem with former CSC co-owner Todd Davis. There were ash dives over California and Arizona as well. “An ash dive is such an important tradition to skydivers,” says Johns. “It’s to signify you’re retiring to the sky, right, like you’re one with the sky forever.” She says the tribute “couldn’t have gone any better ... lots of tears, lots of laughs.” Back when we jumped together, Nathan had also produced the souvenir DVDs that document customers’ jumps. For mine, he used an aggressive rocker as the soundtrack, “Alive” by POD. I wouldn’t think it was possible, but I get more amped watching it now than when I first saw it on that electric day so many years ago. The chorus couldn’t be a more fitting tribute. It’s beyond my control, sometimes it’s best to let go Whatever happens in this lifetime So I trust in love You have given me peace of mind I feel so alive for the very first time I can’t deny you I feel so alive I feel so alive for the very first time And I think I can fly. Blue skies forever, bud. Now you’re touching all the clouds you want.

Wheeling

DME DEALING B Y

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Across North America, we found wheelchair users running their own DME businesses that sell everything from recreational equipment to everyday chairs to elite sporting equipment. These dealers use their personal experience and hard-won knowledge to help improve the lives of their customers.

L O E P P K Y

ohn Squires first connected to the adaptive equipment industry when he became a quadriplegic in a 1987 diving accident. He founded Ohio’s first wheelchair rugby team, competed in numerous handcycle marathons and even met his wife, Annalisa, working in the industry. The two of them spent more than a decade subcontracting with Bike-On.com before deciding to venture out on their own with Rolling in Paradise in 2021. Their goal: Provide the kind of personalized customer service that has become harder and harder to find in the durable medical equipment industry. “It used to be you had a choice. You could go down to a ‘Bob and Mary’s DME shop’ whose owners may have had a disabled child, and you felt that they had empathy for you. In the mid-’90s, things started changing because insurance was cutting everything back,” says Squires. “We feel that it’s incredibly important that providers in our community are actually disabled people rather than nondisabled folks just selling very expensive pieces of equipment to our community. And, you know, that’s what we’re finding.” They’re not the only ones. Husband and wife Reg McClellan and Chantal Benoit spent a combined 47 years playing on Canada’s national wheelchair basketball team. Today, they run 49 Bespoke, an Ontario-based company that sells custom-fit RGK wheelchairs alongside a variety of everyday mobility products. I purchase from 49 Bespoke for some of my own DME needs. McClellan’s experience as a wheelchair user lets him challenge norms in the industry, such as the key measurements used to fit a person for a chair. In wheelchair sports, where the wheelchair is often considered an extension of the body, convincing an athlete to get a tight-fitting chair isn’t difficult. 49 Bespoke has a harder time convincing new everyday users of the benefits of a formed fit. “Right now, people are still being taught to measure outside-inside-outside the thigh and add one to two inches for winter clothing or whatever,” says McClellan. “But we measure outside the thigh to outside the thigh and then see if we can have a rigid side guard to allow an even snugger position.” In addition to reducing the chair’s overall width, McClellan says a snug fit can provide stability similar to what athletes experience when they strap their hips into their sports chairs. McClellan’s mission to get people into chairs that promote an active lifestyle began in the late 1970s. That’s when he took a trip to California to have Jeff Minnebraker, inventor of the revolutionary Quadra wheelchair, build him an everyday chair. While there, Minnebraker asked if he was interested in being the Canadian distributor for the product. Finding out all he needed to do was buy 50 units helped McClellan make up his mind. “I said, ‘Well, geez, I know quite a few people, so why not?’” MARCH/APRIL 2022

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You’d think being the first to bring a solid frame wheelchair to Canada, in the late ’70s no less, would be a risky undertaking. Not so. “It was obviously a product that was due,” McClellan says. “We had 250 of the units sold before the first 50 came in.” Part of this success was the desire of wheelchair users to enjoy active lifestyles. Another factor was the new paint finishes, which set the Quadras apart from older, staler-looking options. The clincher was a simple change from chrome and stainless steel to a powder-coated or anodized finish that reduced the medical stigma attached to everyday chairs. Like McClellan, William Hernandez’s experience as a wheelchair athlete got him into the DME industry. Hernandez was competing for the University of Texas at Arlington in the mid-’90s when he and three other engineering classmates came up with the idea to design a chair. Hernandez started building basketball wheelchairs and founded PER4MAX, a Texas-based company that now offers sport and everyday wheelchairs. Hernandez agrees there is no substitute for the personal experience of a wheelchair user who can identify and address problems with the products they sell. In PER4MAX’s case, that can be as simple as looking at the location of the caster housing or rethinking measurements. “You have individuals who are swimming in their chair. And when I say swimming, I mean they [other providers] always give them a chair that has maybe an inch or two of clearance between their side guards and hips.” Whether it’s building a sport or an everyday wheel-

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chair, Hernandez aims to The DME make a chair that perfectly fits each client, industry both in terms of bodily measurements and how has steadily they move. grown over THE RIGHT the last 60 EQUIPMENT Be years. Grand no 49 n it a w For the Squires, perfect fit goes nd ,o her la n l View Research e l husban C c beyond measurements to selectM g d, Re ing the right type of equipment and estimates that the options based on a client’s goals, functional abilities and budget. John is blunt market could reach about what makes a disabled service provider dif$271 billion worldwide by 2026. ferent from a nondisabled one. “Anybody can spec out a wheelchair for a fit, low [level] paraplegic,” he says. “I That’s more than the 2021 gross mean, let’s face it, those guys, they can pretty much do anything short of walking.” domestic product of Portugal. But, he says, many nondisabled providers have limited

knowledge of which types of equipment and adaptations work best for quads and others with more complex disabilities. That lack of knowledge often pigeonholes people into suboptimal equipment, as what works well for one person’s injury level may leave another unable to use the function they do have. Think of a quad with their hands ace-bandaged to a handcycle’s cranks or fighting gravity as they try to push a manual wheelchair with no dump. John and Annalisa pride themselves on being able to answer disability-specific questions that might stump nondisabled service providers. One area these questions come up most, John says, is when they’re working on active living equipment, like the variety of handcycles that Rolling in Paradise sells. “I get a lot of people asking me, ‘Well, how do you cath when you’re in the bike? What do you do when you’re out on the long ride? How do you manage that?’ They’re not going to ask Joe, the 6-foot-2 blond-haired ATP that’s trying to sell them a wheelchair. And what’s he going to tell them?” John and Annalisa identify as an interabled couple, something that Annalisa says helps when the clients and their partners come in to talk about not only purchasing a product but the realities of living with a disability and, in some cases, taking on a care role. “They feel a little more open to asking me those questions because they know some of the things that I go through from a caregiving standpoint,” says Annalisa. “What about skin? What about their foot placement?” Also, she says, partners who take on a caregiving role tend to have questions about what it takes to get

MONEY TALKS For anyone in the market for mobility equipment, cost is often high on the list of considerations. John Squires says that the varying reimbursement rates provided to sellers by Medicare, Medicaid and private insurers, — numbers that depend on the brand — restrict the options for consumers. That’s a big reason why Rolling in Paradise chose to move away from insurance. They prefer to stay small and provide products that promote an active lifestyle, such as handcycles. It’s something that John says is now a fundamental part of their business. “A lot of the bigger durable medical equipment suppliers, they’re pushing what they make the most margin on, which, most times, is not the best piece of

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someone into and out of a piece of equipment. The Squires agree that those discussions between wheelchair users and their partners can shift the equipment that Rolling in Paradise might suggest. Annalisa gives an example: choosing between a handcycle and a device that attaches to a wheelchair. “For somebody that’s getting into it, that’s new, they look at the handcycle, and they’re like, ‘Wow, it’s so sweet. It’s awesome,’” says John. “It’s this really cool piece of equipment, but it might not be the right fit for that person yet.”

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equipment for the person in our community.” Another frustration John and Annalisa have is the disconnect between the stated mission of health care — to support disabled people in being healthy — and what insurance will approve. It’s a fact that insurance won’t cover many items that can help keep disabled people healthy. “It’s a shame that insurance companies do not pay for some of this equipment because this equipment … the bikes, the handcycles … those ultimately lead to better mental health, better physical health. This, in turn, should hopefully reduce your chance for illness, hospitalization, sickness,” says Annalisa. “And if they really thought about it, they’d see this would help … but they don’t. It’s all about the dollars, sadly.” In Canada, McClellan also sees benefit in selling directly to consumers rather than having funding sources and medical providers inserted into the process. The fewer players involved, the more likely the consumer is to ask questions, push back when something doesn’t seem like a good fit, and ultimately, get the right equipment. Regardless of how you get your mobility equipment, who fits it and who pays for it, McClellan has one final piece of advice gleaned from 40 years in the industry. “People ask me what the best chair is on the market. I keep telling them that there really is only one good chair on the market, and that’s the one that best fits you and does the job for you.”

X MA MARCH/APRIL 2022

OU T IN T HE G R E AT WIDE OPEN:

Rural Life as a Wheelchair B Y

T I M

G I L M E R

William Meyer uses one of his lift-equipped pickup trucks to get into the cab of a hay mower. 22

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User

magine waking up to a herd of elk meandering across your property, or rolling out the door in the morning to spend the day chasing the horizon through fields of wheat in the cab of your tractor, no one but you and your dog for miles. The appeals of rural living are plentiful and don’t discriminate around ability, but there are undeniable drawbacks and sacrifices for people with mobility disabilities who decide to eschew the more accessible convenience of urban life. Still, many of those who do will proudly defend their decision and tell you that the benefits are more than worth the hassles. In the end, home is where you choose to be. For some, that has always been out where there’s more room to roll. Others took years to realize the rural lifestyle was for them, and some discovered just the opposite.

BOR N TO FAR M William Meyer was born and raised in Central Nebraska, working on his family’s farm, ranch and feed lot while growing up in Wolbach, population 254, and later in Palmer, population 469. He has driven a tractor since the age of 9. “I’ve been around a grain cart since I was 12, pulling it with a tractor. I’d also rake hay in the summer,” he says. He owned his first cow in sixth grade and had 30 by the time he graduated from high school. “My dad would train me on weekends.” At 21, he had just graduated from Southeast Community College and signed papers for an FSA farm loan to purchase 235 acres of his own. One week later he was lying in a hospital after a car crash, paralyzed, with spinal cord damage at C4, T1 and T4. Surgeons fitted him with rods on both sides of his spine from C2 to T6, plus a cage around C4. All signs pointed to an end to his farming career. Meyer lay in the hospital, searching for a way to save his farming future. His family had survived the relentless consolidation of family farms that began after WWII. As smaller farms were swallowed up by larger farms due to high costs, economy of scale and global marketing, the sons and daughters of farmers and ranchers had left home and relocated to cities, leaving the farm behind. The Meyer family acreage had almost doubled in the last 10 years while food production from family farms had been cut in half during the rise of corporate agribusiness. After being transferred to Madonna Rehab in Lincoln, he was contacted MARCH/APRIL 2022

by a woman from AgrAbility, a government-subsidized state and federal program whose specialty is helping farmers with disabilities return to agriculture. She had learned from her brother and dad, who knew of Meyer’s accident, that he was paralyzed and in the hospital. Call it fate, God’s will, quintessential small-town culture, or all three. She came to the rehab and shared some adaptive possibilities with him and asked if he was willing to give it a try. Meyer was all in.

The Right Tools for the Job Just three weeks after being discharged from Madonna in 2015, AgrAbility provided him with a lift — a temporary loaner to take him from his pickup and place him in the cab of his John Deere 8310R, a 310-horsepower tractor with a cab that protects him from the elements. Since getting back on the job, he has acquired the adaptive machinery he needs for his lifestyle. He has two pickups, each with a lift, two tractors, an adaptive saddle for rounding up cattle and an Action Trackchair for getting around and managing his property. His young dog, Ricky, his faithful companion, rides with him wherever he goes. Every piece of adaptive equipment he uses for his livelihood has been provided at no cost by AgrAbility, which arranges for grants from various programs. He works year-round farming 450 acres, including rental acreage, and also at the family-owned feedlot, a 4,000acre operation that grows row crops and feeds around 10,000 cattle. He runs a feed truck in the mornings, working with two others, then does whatever needs to be done — tractor work with feed crops, checking on cattle, or tearing out trees to work on fencing. Some may think it would be boring being cooped up in a tractor cab. “Not at all,” says Meyer. “I’m busy paying attention, always doing something, reacting to changing conditions. I rarely sit still. It feels good when I’m working, time passes quickly, and I feel useful when I’m in the cab. I Meyer's view can do anything anyone can do. from horseback. I feel a sense of freedom when I’m being productive. My least favorite thing to do is bookwork, taxes and record-keeping.”

Living the Life of a Nebraska Farmer-Rancher Meyer puts at least 30,000 miles a year on his truck driving from operation to operation and for occasional hunting and fishing trips. His parents, grandparents, aunts and uncles live and work on scattered acreages, while Meyer lives in his own home on his own acreage. Farming, ranching and feeding is most of his life, but he never gets lonely. “I’ve been in bars surrounded by all kinds of people and it’s easier to feel lonely in that situation,” he says. When he’s not farming, he might be fishing for walleye in South Dakota with his parents or hunting wild boar in Texas with buddies, but most of the time he is working. “It’s not just about driving machinery. In spring I get on my horse with a lift, and we bring in the calf crop,” he says. “Rope ‘em and drag ‘em, tie their legs, vaccinate, brand and castrate them, but I stay on my horse.” Besides the feedlot operation, the family has 1,000 head of cows to manage. From early March to mid-April is calving season. The family owns all their own bulls and feeds and sells all the calves. Like anyone living with a spinal cord injury, he has had complications, but doesn’t dwell on them. He hasn’t had any skin problems yet, but he did get infections from his implanted spinal rods, eventually leading him to have them surgically removed. Once a year he sees a urologist in Lincoln who is also a para. He has lived in his own home since having it remodeled for accessibility in 2017, and he hasn’t even thought of moving away from the great plains, as barren as it may seem to some. “Living in town is not for me,” he says. “I’m good with where I’m at. Can’t see myself living anywhere else. I don’t like mountains. No cities.” He says traveling isn’t interesting to him, but he has thought about it. “I’m thinking maybe I should go on a real vacation someday, but you got to have time or money, and I spend on what I need,” he says. “I’d rather buy a new tractor than go to Cancun.”

“On a horse or in a tractor, you’re always moving a little. No sitting dead still.”

NEW MOBILITY

On the day this photo was taken, the low was -40 degrees Fahrenheit. With the sun at its zenith, Tracey Porreca and her husband, Tony, jumped into action to snap the pic, knowing good light would last only an hour. That’s normal for mid-December in Delta Junction.

After enlisting, she became one of the first women machinists in the Navy, repairing submarines in the maledominated field. “Many men resented my being there,” she says, “so I worked very hard to become proficient in everything I could.” Porreca married a man she met in the Navy and left the service after their first child. The couple’s third child was born with hypophosphatasia (see sidebar), a rare bone disease doctors were unable to diagnose for over two years. Figuring out her baby’s diagnosis led Porreca on a path of advocacy, research and asking questions. “The doctor, a geneticist who diagnosed my son, asked a lot of family history questions that led to discovering the rare disease ran in my family. I had it, too, but had never known it. I thought it was just the way I was.” She had learned to live with loose joints, soft skin, and frequent bruising. The disease was progressive and included bone weakness. The stress of caring for her third child led to a divorce in 1993.

A New Life

T HE L AS T FR ON T IER Living in Alaska isn’t easy for wheelchair users, but Tracey Porreca wouldn’t want to be anywhere else. She and her husband, Tony, live in Delta Junction, near Fort Greely, a remote location known mostly as the U.S. Army’s Northern Command Center, a launch site for anti-ballistic missiles, and the Cold Regions Test Center. It’s the coldest location in the states, yet it is also an agricultural valley surrounded by three towering mountain ranges. “There’s farming over a large area and nothing around us,” says Porreca. That is if you don’t count the bison herd that occasionally gallops past the cabin-home that she and her husband finished building in 2010. “Outside our door is a spruce forest. Moose, eagles and owls are frequent visitors. I love it here.” She’s a Navy veteran and a mother of three who describes herself as a survivor. As a 10-year-old growing up in Xenia, Ohio, she weathered the 1974 “Super Outbreak” when over 100 tornados devastated the region in less than 24 hours. She remembers the role she was given to help the volunteer fire department provide for the townspeople: “My job was to cook for everyone, and at 10 that was a big job, and it had a huge impact on me.”

Porreca started the first support organization for HPP in 1994 and continued to work different jobs for several years. In 2005 her work offered her a choice of relocating to Hawaii or Alaska. She chose wilderness over paradise — drawn by her wanderlust and an adventuresome spirit — and moved north with her two younger teenagers. After living in and around Anchorage, the most populous city in Alaska, Porreca and her new husband, Tony, built a cabin near Delta Junction. “We both talked about our love of outdoors and how we wanted to experience the “real” Alaska,” she says. She had been running the HPP organization, flying all over to speak at conventions, and working as an Iditarod photog-

Hypophosphatasia HPP is an “orphan disease,” a term used to describe diseases the pharmaceutical industry has not invested in, usually because only a small number of people are affected. In 2015 a new “orphan drug”— Strensiq — was discovered. Tracey Porreca calls it a miracle. Only about 800 people in the United States are diagnosed with the disease, which makes insurance matters tricky, complicated, and frustrating. She must renew her coverage every six months. For more information, go to magicfoundation.org/Growth-Disorders/ Hypophosphatasia.

MARCH/APRIL 2022

rapher who also led Aurora Borealis she is looking at 4-wheel drive vans. Still, she’s tours. But her bones and joints were worried because lifts tend to freeze up in the starting to give out. After a total knee extreme cold and driving can be treacherous. replacement went wrong, she started She has occasionally met others with using a manual chair with power asmobility disabilities, mostly when she lived sist in 2017. As if all that hasn’t been close to Anchorage. While there she learned enough of a challenge, in the last of a group called Alaska’s Healing Hearts. couple of years she had Covid, then Porreca poses for a selfie with husband “They’re all about hunting and fishing, and Tony in an ice cave. cancer. “I had a double mastectomy they were originally set up for disabled vets,” in October last year.” she says. “Our move to Delta Junction put me too far away to Now, at the age of 58, having settled into a world of incred- participate, but I still talk to them.” ible beauty and daunting challenges, she needs a power chair. None of this has dampened her love for her “unique slice” “I haven’t ordered it yet. My insurance company is losing its of Alaska, surrounded by mountains, glaciers and volcanoes. mind, the drugs are really expensive, and I’m trying to get a Despite the cold, northern location, plants thrive. Porreca new chair in less than five years.” has a greenhouse dedicated to raising tomatoes. “GardenLiving with a disability in a remote area is difficult. “You ing connects me with my family and wonderful memories don’t do anything without help,” she says. “It’s really hard to of growing up in a farming community, gardening with my be independent. Getting around is hard. I have to travel 350 grandmother, and 4-H as a kid,” she says. “I get a great deal miles for specialists, to Anchorage, and it’s two and a half of personal fulfillment and satisfaction from starting somehours to an airport. I go there once a month for cancer treat- thing from a tiny seed and watching it grow. It’s so gratifying ment and to see my kids.” to see all the jars of food I’ve canned and our freezer full of Travel can be dangerous as well. “Not long ago my right wonderful vegetables I’ve grown from seeds.” Cooking is one front tire on my little SUV edged off the pavement in the of her oldest passions. snow and I slid 25 feet down an embankment. I had to crawl Faced with trials ahead, that 10-year-old girl who went through an F5 tornado reminds her older self to be brave. “I decided then I would not be fearful. The mindset is to meet things head on,” she says. “My current situation is another mountain, how am I going to tackle this one? I can, and then I’ll go on to the next step.”

HOME AT L AS T Randy Langton, a 64-year-old para, has lived the life of a dedicated artisan, living off sales of his handmade wares for the past 40 years, mostly without any government benefits. During that time, he bounced between many living situations before finally finding what feels like home. In late spring of 1975, as a top skier on his ski team, just a week away from finishing high school in Medford, Oregon, he sustained a T5 spinal cord injury in a hang-gliding crash. He graduated the following year and enrolled at nearby Southern Oregon State College (now “I decided I would not be fearful. The mindset is to meet things head on,” says Porreca. Southern Oregon University). Unforgiving terrain and an inaccessible campus led him up to the road and wait for help. I’ve followed dog teams out to transfer to Portland State University, an urban campus in into the wilderness, and I’ve always been OK, but this un- Portland. He graduated with a degree in painting in 1981. “I nerved me. Now I’m hesitant. You can be somewhere for 12 looked around, tried to get jobs after college, worked briefly hours and never see another car. I’m nervous about going in a stained-glass shop and decided I could do this stuff on my own,” says Langton. anywhere by myself now.” She’d like to get a truck, but with a power chair imminent Living in a Portland apartment, he started selling his hand-

NEW MOBILITY

lier marriage, Lara, lived with them. With the advent of the internet, their in-person sales dropped off, and in 2005, they sold their property and moved to Beaverton, a Portland suburb, to save money. Lara got married and the two couples shared the small house. Randy continued commuting to the weekend market but quit in 2008 after more than 25 years as a regular. Commuting had grown wearisome. “We wanted to get some land and get out of the city,” he says. In 2015, after an exhaustive search for a house on small acreage, the two families took a big leap and bought a house on three acres outside Ellensburg in Central Washington. It was a family move that took their combined resources to pull off.

Rural Living

Langton uses a bariatric scooter like an ATV to gather firewood, which he chops himself. Below: Three generations share a rural lifestyle, thanks in large part to the internet.

made, wooden jewelry and accessory boxes in 1982 at the Portland Saturday Market, an open-air arts and crafts market. Langton was the only wheelchair-using artist as the endeavor expanded to Sundays and became a popular tourist stop in Portland, drawing a million visitors per year. “My stuff sold the first day. I was surprised anytime I sold anything,” he says. “Lots of times in the early years I had to sit out in the rain, ice storms in the winter. Sometimes it was just unbearable.” After about 10 years of hawking his goods, he got the spot he really wanted, under the protection of a nearby bridge, where the shoppers felt comfortable all-year-round. After living in three different city apartments, he bought a house. In the late 1990s he met Dottie, a ceramics artist whose booth was next to his. In 2000 they married, and Langton’s life changed dramatically. He and Dottie began looking for a house together, possibly on acreage. They bought a place near the scenic Columbia River, about 45 miles from Portland and close enough to make their weekly pilgrimages to the market. “It was on a hill, a nice house. It had a big shop, but outside was pretty much inaccessible with a great view, but no garden,” he says. “I could barely move around outside.” Dottie’s daughter from an ear-

At 1,500-2,000 feet in a fertile basin next to the Yakima River, Langton has finally found his rhythm and his place, all without missing a beat doing what he loves. He lives a simple life in a modest home on an older homestead that was split off from a larger hay farm with a second building on it, a twostory historic building. “At first, I wasn’t sure about the move, but I’ve grown to love it here. This is rural living,” he says. Hard, snowy winters provide one of the biggest challenges, but Langton manages to find the positives. He purposely bought an oversized bariatric scooter to ride around his property and gather firewood. “I use my scooter like a tractor or ATV,” he says. Its big 12-inch wheels give him plenty of clearance to go wherever he needs — snow or no snow. “I split firewood every day, I like it. It keeps me warm, it’s satisfying.” He especially enjoys moving about freely on the acreage. He gets up every morning to make earring racks for a few hours, then gets the mail and leaves packages to send his customers. He has carpel tunnel syndrome now and had to drive over a montain pass to Seattle for an operation, but he gets regular care in Yakima, no more than an hour away. In his home he uses his manual chair. In the spring the families have a garden, but it can be windy. Lara has four horses and works at an Arabian breeder’s place up the road. “We are definitely in the country,” says Langton. “Cattle run down the street. Hundreds of them. This is nothing like being in the city, and it couldn’t have happened without the internet. It’s necessary for our lifestyle here. Now we sell all our stuff remotely. It would be nice to have more money and fix things up, but this works perfectly for all of us.”

MARCH/APRIL 2022

nearest disability specialist or place where I could get my chair repaired was three and a half hours away,” she says. “I had no awareness of disability culture or laws. Nobody did.” She had to leave the Currie-Slayton area to attend three two-year colleges, two in Minnesota and one in Texas, graduating with degrees in photography and travel, event planning and hospitality, and also studied American Sign Language. “I have degrees in all kinds of stuff,” she says.

S E AR CHING F OR MOR E Rachel Malone, 33, grew up in Currie in Southwest Minnesota where her family had lived for generations. She got an immediate taste of what it’s like to live in a remote rural area — she was born with spina bifida and needed an ambulance to whisk her through a blizzard to a bigger hospital in Sioux Falls, South Dakota, that could perform needed surgery. With only 233 people, Currie is one of the smallest towns in the state. “To me,” says Malone, “all towns there are my hometown because you have to go to all of them to do anything.” Slayton has a county hospital and courthouse, while Currie has a railroad museum and state park. Another town has a bar. You may have to go to church in another town. A lot of towns don’t have grocery stores. There are no taxis or transportation. Her ancestors, farmers from Ireland, started an Irish colony near Currie. “A lot of them were there when the railroads came, so they worked around trains. Some stayed, but most people were farmers. My dad is a lawyer, and our family owns land — corn, soybeans, cattle, pigs. Everyone knows my family.” The nearest high school was 10 miles away in Slayton (pop. 2,002). With a graduating class of 40 students and only 400 in the entire school, Malone often felt alone as a disabled student. “I had a regular gym class, but no adaptive sports or extracurricular activities. I didn’t know you could sue for compliance and make it happen,” she says. “They would tell me when I was growing up that I was teaching them. ‘We are learning from you,’ they’d say. It was like I was the first and only wheelchair user, and I knew nothing then.” For the majority of her medical needs — including 10 surgeries before she was 15 — and any real contact with disability culture, Malone had to trek over three hours to St. Paul. “My

Malone on Currie farm

Looking to further expand her horizons, Malone applied for an intercultural study abroad and exchange program scholarship sponsored by Mobility International (MIUSA) and CIEE. She was selected and got to go to Ireland, the homeland of her ancestors. She attended Dublin City University and studied Irish history, Irish tourism and sustainability. “I wanted to feel like what it was like to grow up there. I got to meet my family relatives and went to a brewery. Everyone there knew my family.” She found Ireland’s approach to disability to be very different. “People are very nice in Ireland, but disability is treated like charity. They were helpful to me. A bus broke down and six people lifted me and set me down from the bus. Here [America] they would ask first, which is both good and bad.” She has now traveled to 13 different countries and hopes to make a second trip to Ireland to attend the Harkin Summit in Belfast, an international gathering of disability activists and organizations that meets annually to advance career goals and aspirations for people with disabilities. Her travels have given her an opportunity to make good use of her photography skills. Her varied travel and living experiences have also given her an appreciation of the different levels of disability awareness that exist in America. “A lot of rural communities where I grew up are still not making changes. It’s like they don’t care. They don’t get it that business will get better with improved accessibility,” she says. “The level of awareness there is just not what it is here.” Almost seven years ago she decided to leave behind her rural roots and settle in Boulder County, Colorado. She currently lives in an apartment in Lafayette, not far from Boulder and Denver. A desire for better weather factored into her move, but the real draw was her proximity to more opportunities to live an active life, with programs and responsibilities that didn’t exist in Currie. She’s a member of Denver’s Commission for People with Disabilities, and she makes use of the full range of adaptive sports she couldn’t do where she used to live, including air rifle, fencing, power weightlifting and curling. She has a job working for the Boulder County school

“It was like I was the first and only wheelchair user. I knew nothing then.”

Currie, Minnesota, from one end of town to the other.

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Breaking Away

district and recently added another position working as an ER receptionist for a hospital in Boulder. She’s a long way from Currie now, but remote rural life still hangs on in America. About a 20-minute drive from where she grew up, you’ll find the iconic small town of Walnut Grove, population 800, the childhood home of Laura Ingalls Wilder, author of Little House on the Prairie, set in the late 19th century and made into a popular TV series that ran in the 1970s and 1980s. You can still get a taste of that era if you stream the show on Amazon Prime, and recently Paramount announced it will make a reboot of the popular series. Not surprisingly, internet services are now available in Walnut Grove.

Resources • Action Trackchair, actiontrackchair.com • AgrAbility, agrability.org • Alaska’s Healing Hearts, alaskashealinghearts.com • CIEE, ciee.org • Langton Studio, etsy.com/shop/LangtonStudio • Life Essentials, lifeessentialslifts.com • Mobility International, miusa.org • Willpower (video of William Meyer), youtube.com/watch?v=lbEcvUTdWI4

Bright lights, small city: a different kind of life in the suburbs of Boulder, Colorado.

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• Personal stories and photos of wheelchairusing students at every school, plus advice from successful grads • Resources and scholarships for wheelchair users

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Searching FOR SOLUTIONS to

Spasticity

ost wheelers who live with spasticity know all too well just how irritating and inconvenient spasms can be and how much they can limit your ability to get through the day. Spasms can be more than just a pain in the keister. They can also be disruptive and dangerous — leading to insomnia, pain and further injury. The nerves of the brain and spinal cord form a complex communication circuit that controls our body movements. Information on sensations or processes such as touch, movement or stretching is sent up the spinal cord to the brain. In response, the brain interprets the signal and sends the necessary commands back down through the spinal cord to tell the body how to react. An SCI disrupts that flow of signals, making them bounce back to the spinal cord’s motor cells, where they cause a reflex spasm. This can result in a twitch, jerk or stiffening of the muscle. Just about anything can trigger and sustain spasms. And, as with so many other things SCI-related, spasticity varies widely from person to person. Common spasm triggers include irritation to the skin, such as rubbing, chafing, a rash or ingrown toenails, and anything very hot, cold or painful. Pressure sores, a urinary tract infection or full bladder, constipation or large hemorrhoids can set them off, as can a fracture or practically any injury below the SCI level. I’ve come to intimately know spasms and the havoc they wreak over the past 33 years. I’ve gone through most everything physical therapists and pharmacists have offered to rid myself of them. Initially, I tried contorting myself into advanced yoga pretzel positions, a common approach recommended by PTs, who advocate range-of-motion stretching to maintain flexibility and reduce muscle tightness. I also tried weight-bearing or standing with support to help stretch muscles, and I even wore splints, braces and progressive casting to provide continuous muscle stretching.

NEW MOBILITY

BY RICHARD HOLICKY

EVERYONE IS DIFFERENT Like many with spinal cord injuries, Ben Hernandez, a C5-6 incomplete quad, deals with spasms daily. When asked if he experienced bouncy leg syndrome, contractions, extension or other types of spasms, he quickly responded, “Oh, pretty much all of the above.” Whether it’s cold temperatures, pain, a UTI or something else, Hernandez has learned what to expect in the 24 years since his injury. Likewise, he knows what works and what doesn’t for his body. He often has better luck with natural solutions than with pharmacological ones. “For a while, I took about 160 mg of Baclofen, along with Klonopin, Valium and Elavil for nerve pain,” he says. “The side effects, primarily mental acuity, were too much to deal with.” He quit cold turkey against his doctor’s advice, which led to a seizure. His experience is a good reminder that many of the most common anti-spasticity medications come with serious and potentially dangerous drawbacks. Even moderate doses of some of these medications can result in drowsiness. He now sticks to marijuana, which he has found helpful, and what sounds like a lesson plan for a yoga class. “I stretch twice a day following a routine of yoga poses for about 30 minutes. I also do massages, using a TheraGun and a licensed massage therapist,” he says. “Deep breathing is quite effective, especially breathing in through the nose and out of the mouth, with the exhale a bit longer than the inhale.” He occasionally incorporates acupuncture, acupressure and dry needling. More rigorous exercise also helps reduce his spasms, as long as he can fight through an initial increase in spasticity. He regularly sits for 45-minute sessions on an FES bike. Jim Erjavec, a C5-6 incomplete quad, battles powerful spasms that make daily activities difficult. “I’ve got great grip in my right hand, but the tone interferes with that,” he

says. “My quads are very strong, and spasms can be particularly bothersome while dressing.” Like Hernandez, Erjavec says his spasms can be triggered by a downturn in the weather or becoming chilled. “If I stay warm, I’m better,” he offers. He also stretches for spasm relief but doesn’t enjoy the same results as Hernandez. “Stretching helps some, so does exercise and the vibration plate,” he says. “I tried massage as well, but nothing really solves the problem.” He experimented with marijuana and CBD, but to little avail. “I’d get some short-term relief, enough to take the edge off, but nothing made the spasms totally go away,” he says. Marijuana relaxed him some but didn’t help the spasticity all that much. “It did help for sleep,” he says with a chuckle. He now takes 30 mg of Baclofen spaced throughout the day, down from 60 mg. Sherown Campbell, a C4-5 incomplete and walking quad, reports a similar experience with spasticity medication. “I tried Baclofen. It took the edge off but didn’t solve the problem. The spasms never went away,” he says. “I haven’t utilized CBD much. It was helpful, but not enough to justify being a normal thing for me.” He mainly deals with abdominal and triceps spasms, pri-

marily triggered by cold weather and inactivity. They usually subside once he spends some time up and moving on crutches or ski poles. “My quad spasms are quite strong,” he reports, “but I can usually overpower them. I also deal with abdominal and triceps spasms, along with the ones brought on by cold or stress, which can also be quite intense.” He learned to see that not all spasms are bad. “Early on, I was able to use the spasms to help with transfers, blood pressure and function/movement,” he says. “They can also help with erections.” Research and a host of PTs confirm that spasticity is not always harmful or bothersome, nor do spasms always need to be treated. Sometimes spasticity can help with functional activities such as standing or transferring. Spasticity that causes your fingers to bend can help you grip objects. Spasticity can also signal that you have a medical problem that you might not know about otherwise, such as a urinary tract infection, fracture or pressure sore. Erjavec has often wondered if his leg spasms might be the key to walking again. “If the spasms were milder, I might be able to walk,” he says.

THE PT PERSPECTIVE When it comes to spasticity, Laura Wehrli, Craig Hospital’s director of physical therapy, tells a hard truth: “There are no magic cures or potions.” That said, there are some go-to interventions. “We encourage stretching to maintain passive range of motion, active or passive standing and weight-bearing in a safe, supported position like a standing frame, and if possible, strengthening the muscles opposing those that tend to be spastic,” says Wehrli. “We use neuromuscular electric stimulation to assist with this strengthening and spasticity reduction when possible.”

“Exercise, electrical stimulation and other active interventions can help mitigate spasticity, so partnering with a physical therapist is a helpful strategy for people with spinal cord injury,” adds Meagan Rozwod, Craig’s clinical supervisor of locomotor and FES therapies. “In some cases, spasticity can be a helpful tool to assist with functional tasks. However, when it is negatively impacting function or quality of life or causing pain, we work with the rehab team to determine whether medication, injections or indwelling pumps are appropriate to help manage the spasticity.”

MARCH/APRIL 2022

PUMPS AND OTHER MEASURES Due to progressively more severe spasticity, I eventually resorted to a Baclofen pump. Installed via surgery, it delivers a small dose of the drug directly into the spinal canal via a catheter from pump to canal. It also comes with a bonus — because the dose is so small and delivered to a contained location, the systemic sedative effect is avoided, and I don’t end up falling asleep. The pump worked like magic until, alas, it didn’t. Evidently, I possess bad pump juju, since the catheter broke as it entered the canal, preventing the drug from reaching it. Another repair job came approximately 18 months later. That fix lasted about two years until one day, as I emerged from the shower, I happened to spy the pump emerging from the right side of my belly with a clear enough view to read the serial number. Rather than trying to stuff it back in and play-

ing the “don’t try this at home” sort of fool, I sought a surgeon to perform the eviction. It’s important to mention my pump experience is far from common. Jesse Collens, a C1 quad from Tacoma, Washington, calls the Baclofen pump he’s had for 10 years a game-changer. “I used to have full-body spasms in bed that made it hard to breathe,” he says. He got the pump after oral Baclofen proved unable to tame his spasms. It’s been smooth sailing since doctors found the right dose for the pump. He goes in every three or four months to get it refilled and ensure it’s working properly. He replaced the pump itself once — they have a seven-year battery — in what he describes as a quick outpatient procedure. Other surgical options far less commonly performed because they are not reversible include cutting a section of the spinal cord (myelotomy) or nerve roots (rhizotomy) or lengthening and transposing a tendon.

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When spasms are limited to only certain body parts, people can opt for nerve or motor point blocks. These consist of phenol alcohol wipes, though these are now being replaced by Botox injections, which, although temporary, allow more targeted and predictable results. Botox bladder injections, for example, have become a popular and common way of treating severe bladder spasms. None of these interventions guarantees total relief in banishing spasticity from daily activities, though each may provide some relief. Effectively dealing with spasticity requires we learn our bodies and maintain a checklist or inventory of possible triggers to scan during a particularly nasty spell — do my toenails need trimming, do I have a UTI, are my clothes too tight, do I need more rest, am I too cold? What do I need to avoid or simply not do? It’s also a process of learning what works and doing more of it. We must engage in constant, evolving negotiation,

weighing the benefits of different interventions against adverse side effects and deciding if the activities that trigger the spasms are worth the price. And much like every other aspect of SCI/D, it requires we reconcile ourselves to learning to live with that which we can neither control nor change. Hernandez suggests probably the simplest and most useful advice for other wheelchair users trying to figure out their spasticity. “As I’ve aged, I found that I need to take the time to take care of myself,” he says. “I tell people with newer injuries to try different solutions so they can be more self-aware regarding what works and what’s helpful to be able to have a life.”

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s an emerging hip-hop and graffiti artist in Seattle’s Beacon Hill neighborhood in the ’90s, teenaged Daniel Kogita decided he would go by the name Khazm. Like a chasm, he wanted to break ground and saw himself as part of a vibrant underground community waiting to be exposed. He changed the spelling because “K” and “Z” flowed better in his art, and by the time he graduated high school everyone knew him as Khazm 247. He lived up to his new moniker by dedicating the next decade to growing Seattle’s hip-hop community and making an international name for himself as a talented emcee, producer and visual artist. In 2005, the Universal Zulu Nation, one of the most famous and influential international hip-hop awareness groups, recognized his service by proclaiming him a Zulu King, a title the group used to recognize leaders. Thus, was born King Khazm. Khazm hasn’t let the title or respect go to his head. He is still committed to empowering the underground and hiphop communities, and as a proud wheelchair user, he has expanded his influence to do the same for people with disabilities and other underserved communities. Still, the soft-

spoken king thinks about the future with the same passion and restlessness that inspired his name years ago. “I’m one of the very lucky ones,” he says. “Sometimes I feel like I’m moving in slow motion because I live so much in the future. I think in great detail about where we should be going, where we are and what we can be. This feels so slow, like everything is moving so slow, but I have to remind myself that progress is indeed being made. We have to keep chipping away and count our blessings that we’re still here and able to see the progress over the years.”

Despite just returning from a world tour and often being on the road, King Khazm’s home and true domain will always be Seattle and the 206-area code that it covers. He grew up on the city’s south end in one of the country’s most diverse zip codes. Paralyzed in a car accident at the age of 5 and growing up as a C7 quadriplegic in a rough neighborhood wasn’t easy, but Khazm found refuge in hip-hop and art. “I didn’t get into too much trouble,” he says. “I made a lot of

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Khazm describes his visual art as, “highly stylized, Salvador Daliinspired, life-inspired. I like forced perspectives. I like sharp angles. I like exaggerated perspectives. My style is very introspective. Maybe something that’s a little bit more subjective, to just have to sit with it as heavy detail. I have a lot of different styles, but what I gravitate toward is more detail-oriented.”

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mistakes, but nothing too serious.” While he had a good family and upbringing, without any real mentors in the hip-hop community, he needed to figure things out on his own. As he did, his talent and charisma drew his peers closer and he emerged as the thing he never had, a mentor, or as he calls it, “a big homie.” “People just kind of gravitated toward me,” he says. “I’d always be surrounded by people, anytime day or night, whether roaming the streets, initially as a graffiti artist, or getting into music and sharing my knowledge of beat-making and production with my peers or honing my skills with lyrics and showing them how to record.” In 1995, the year before he graduated from high school, he and a group of friends founded the Madness After Dark Krew, a graffiti and hip-hop group. The MAD Krew organized events ranging from music and hip-hop shows to DJ battles to breakdancing competitions, all with the goal of invigorating Seattle’s underground scene. For the next five years, Khazm and MAD Krew built their reputation and repertoire. Khazm and other members hosted a weekly TV show, Hip-Hop 101, featuring emerging artists from around the country. Broadcast on Seattle Community Access Network, Hip-Hop 101 aired weekly through 2009. Kitty Wu cohosted another music show on the network and quickly identified Khazm as a potential collaborator and friend. “He has this grandiose thinking about all things,” she says. “He’s a visual artist, he produces music, he’s a teacher, an educator, an activist … there’s really nothing he cannot do.” Working with the MAD Krew, Khazm served as the creative director of Enter the Madness, an hour-long documentary featuring a montage of graffiti, other visual art, DJ battles, breakdance competitions, hip-hop shows and more. He joined some of the MAD Krew to form the group Cyphalliance (“cypher” in the hip-hop world is a ritual of coming together in a circle) and helped found Fresh Chopped Beats/MADK

Productions as a record label to put out the group’s debut album. “That’s kind of where we started doing more regional and national tours and events and eventually international tours, and started making a name for ourselves,” he says. In 2004, Khazm and Wu started 206 Zulu, a Seattle chapter of the international hip-hop Zulu Nation. The chapter was an evolution of all the work Khazm had done and a means to achieving his vision for the city’s hip-hop community. “He was such a great person to have as the lead,” Wu says, “because he was able to connect all of these varying groups [across Seattle]. He was able to just bring all of us together under the banner of 206 and got us to just start dreaming big and deciding what it is we wanted to do in the city.” Today, functioning as a nonprofit, 206 Zulu offers all kinds of events and programs centered around hip-hop culture, including breakdance competitions, spray painting mural festivals, after-school programs, media creation opportunities and much more. “We pretty much go anywhere we can spread positivity,” says Khazm. If there is a physical heart for 206 Zulu, it is unquestionably Seattle’s historic Washington Hall. Opened in 1908, the red brick building has a rich history but was facing demolition when a coalition including 206 Zulu purchased the property and launched a multi-milliondollar renovation effort. The fundraising and actual renovation took over seven years, but 206 Zulu set up and helped keep Washington Hall busy with shows and events in the interim. During the renovation, 206 Zulu staff and community members would grab the corners of Khazm’s manual chair and guide him up the stairway to the venue. The remodel finally finished in 2016, and 206 Zulu was named one of the three anchor tenants. The years of work restored the building’s Victorian charm and added an elevator and accessible bathrooms. “I’m sure my friends are glad they don’t have to pull me up the stairs every single time,” says Khazm.

Khazm played an integral role in finding a home for Seattle’s hip-hop community and fostering almost 30 years of growth in that group. You might think he would be content to sit back and enjoy his past success, but he is not that type of king. After a pandemic-forced pause, he hit the road last year to promote Pangea: Hip Hop Heals, an album on the impact of COVID, featuring 50 international collaborators from 17 countries. That tour took him to the United Arab Emirates and France. He is currently gearing up to hit the road again to promote his newest album, Return of a MAD. Khazm describes the new album, released on Feb. 25, as “a little less introspective” return to the themes he covered on his last album, including the intersections of hip-hop, identity, disability and growing up biracial (he is half-Japanese). In addition to advocating for Seattle’s hip-hop commu-

When he reflects on how far he has come since he was a kid rolling around Beacon Hill, Khazm always thinks back to the role hip-hop played in guiding him. “Hip-hop and the arts were a real grounding point for me,” he says. “Hip-hop kept me alive through the darkest of times. … It literally saved my life.” Sitting in a Paris hotel room while on tour, Khazm exudes a sense of the surreal as he reflects on the last 30 years. “I’ve never really had a traditional kind of job,” he says. “I don’t even know if I could survive in that world.” Surreal as that may feel, the impact he has had on the Seattle hip-hop scene is very real. Thanks to the efforts of 206 Zulu and other organizations, aspiring artists have numerous options, including hip-hop residencies and access to recording studios. He says it was hard to get the type of money for that access back in the day, “but now we’ve got free access for youth and all kinds of stuff and all you have to do is just have a desire to get in there.”

As a C6-7 quadriplegic, Khazm has some function in his fingers but not enough to easily use a spray can, so he focuses on other mediums, including markers, stickers, brush paintings, canvas, wood boards, digital and other mediums: “I started as a visual artist, illustrator, graffiti artist, as early as I could hold a pencil. For large-scale pieces I mainly design them and have folks execute it. Everything is a learning process.”

nity, Khazm has gradually gotten more involved with the disability community. He released a single called “disAbility” in honor of the 25th anniversary of the ADA and performed the song live as part of Seattle’s celebration. He has never hesitated to show his wheelchair in his music videos or on camera, but some of his recent lyrics delve into his thoughts on disability more than his older music. In 2018, he joined Seattle’s Commission on Disability and the board of the Here and Now Project, the Washington chapter of United Spinal Association. “He’s got a lot of wisdom that comes with living with a disability for so long,” says Kenny Salvini, the Here and Now Project’s founder. “He is super introspective and thoughtful — exactly the kind of person you want to grow and develop an organization.”

Years ago, he set out to bring the underground hip-hop culture to the surface. Today it can be hard to look around without seeing its influence, yet Khazm’s pride is tempered. “It’s a double-edged sword,” he says. “It’s great to see the expansion of hip-hop. I just want to instill the cultural aspect of it — that it is bigger than just a genre. It’s the dance, the music, the art, the traditions, the principles, the history and all these different aspects that make hiphop culture.” Now that hip-hop is fully in the mainstream, Khazm sees too many artists sacrificing the cultural focus for financial returns. “It’s positive that they can get out of the hood to rap or whatever, but hopefully there’s some sort of connection to the culture and how they arrived at what they’re doing.”

MARCH/APRIL 2022

DAILY DILEMMAS By Sheri Denkensohn-Trott

ATTENDANT PAY HEADACHES Q. I have had the same primary caregiver for over 15 years, but the rising cost of attendant care jeopardizes my ability to retain her. I am a C4 quadriplegic who lives independently and works full time, but I am dependent on Sue for all activities of daily living, including getting in and out of bed. Because of my salary, benefits and other savings, I am not eligible for Medicaid, and I pay out-of-pocket for my attendant care. After 38 years of being paralyzed, I need attendant coverage for additional hours. Along with needing to go to bed earlier because I am tired, I require more care because I recently got a colostomy that must be changed during the day. I pay Sue $21 an hour, and she works eight hours, six days a week. She gets me up and does my morning care and then comes back in the evening to put me to bed. I do not have any coverage between 11 a.m. and 5 p.m. I have a second person who comes on the days Sue cannot cover. I do not have any family living nearby, and even if I did, I don’t want to rely on family for my care. I know I need to talk to Sue about the extra care that I need and that I cannot afford to pay her the same rate for additional hours given my current budget. The prospect of the inevitable conversation is causing me stress, so I keep putting it off. It has also been so long since I hired a primary caregiver that I’m not prepared to start a search. I worry about being left high and dry. What if she says no to working additional hours for less pay? What other options do I have to possibly retain her? If I do need to hire someone new, how can I find someone who is so reliable and knows my needs so well?

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his is a difficult situation, but not an uncommon one. Before you start analyzing your solution, it is worth taking a few minutes to make sure you are not eligible for any financial assistance from the state. I know you said you aren’t, but state legislation and return-to-work programs may have changed since you last investigated. Assuming you still aren’t eligible, the first thing you should do is an analysis of your budget and care needs to understand your options. For instance, can you retain Sue for her current schedule under the existing pay and extend the hours of your other provider to cover the added hours at a lower rate? It is also worth talking with Sue to understand her needs and thoughts. Be honest about your constraints. Sue may be willing to do the extra hours for less money. The two of you can possibly figure out a schedule where she still does your main care each day, and you find an additional person for other hours at lesser pay. Depending on your level of trust with Sue, revealing some of your financial specifics could help. Longterm relationships between caregivers and clients are usually unique and complicated. If you two have a deep understanding and respect for each other, your candor could lead to an unexpected solution. Even if no solution is attainable, having an open discussion could help you maintain the relationship and keep other options open. Whatever you decide to discuss, it is wise to have this conversation months before making the changes. That gives both of you time to think about the options. Sue may be unwilling to change her hours or work extra hours at a lesser rate. Therefore, even before

initiating this conversation, you should take steps to prepare yourself for a potential change. You may soon need to overhaul your care schedule completely. Think about other alternatives. Is there a college nearby with a nursing or physical therapy program where you could recruit a student to work for you at a lesser cost? It may also be helpful to talk to others in a similar situation to see if they have come up with innovative ways to sustain caregiver relationships that are not as costly. For example, if you have the space, many individuals have “live in” help, and the cost of the care is offset by rent and other expenses that the employee would typically incur. These are all difficult and stressful issues, but your independence and health are paramount. Taking the time to ensure you have the coverage you need is imperative. Losing Sue would be a big blow, but you have to persevere.

A Request For Anyone Who Relies on Caregivers: Please take this opportunity to reach out to your congressional representatives as well as groups such as United Spinal Association to explain how difficult it is to work and pay for necessary care. The system is not in line with current norms. While individuals with disabilities want to be independent and get an education and work, getting a good job and earning a salary often makes you ineligible for benefits that are necessary to sustain quality care. It serves as a ridiculous disincentive to getting ahead. Lawmakers should be working to create solutions that empower people with disabilities and encourage them to work.

REFRAMED by Reveca Torres

TOUCHY FEELY Skin against my skin, softly touching me. It feels delightful. I get goosebumps. A needle on the bottom of my foot and the doctor says, “Can you feel this?” I can’t, but I see the goosebumps. Glove-covered hands wash my body and the cold water upon contact … goosebumps. After reading the book Pleasure Activism and discussing it with other women with spinal cord injuries, it got me thinking about my relationship with touch and different types of touch — sensual, functional, pleasurable, painful and even imaginary. I once was encouraged to explore my body, touch my body, and give consent to someone I trusted in helping me find out where I could feel and what felt pleasurable, painful or triggering. I found some areas still had full sensation, and others were numb. Sometimes I couldn’t feel anything. Grief, loss and desperation sat in my stomach … just wishing to feel even a distant spark. It’s become a practice to see what I feel. Why is my stomach nervous? Can my gut trust? Do I have to pee? Is this hot or cold? Smooth or sharp? I let myself be curious using objects, textures, water, even air. What does it feel like? If I can’t feel it, can I imagine it? I invite my other senses to join — how does touch feel with my eyes closed? Open? What does it sound like? A health care provider once told me I wasn’t really feeling my foot. That someone with my injury couldn’t feel that. This interaction stuck with me and led me to not trust my body for years. Today I choose to believe my body. It stays the same. It’s always changing. What it tells me is the truth. It’s mine and I get to decide what I feel and how.

MARCH/APRIL 2022

OWN IT By Regan Linton

MY DISABILITY HALF-LIFE I’m approaching my disability half-life. Not in the “half-life” sense of nuclear physics and atomic decay — although yes, we are all slowly in the process of decay. But rather, the point where I will cross over to having spent more time in my life on wheels than not. This March I will celebrate the 20th anniversary of the car accident that left me paralyzed from the chest down. And according to my calculation of how long I spent not paralyzed (20 years, four months, 24 days and eight hours), I will cross the half-life point July 31 at 7:30 a.m. Mountain time. Now, I’m sure I am not the only one who has gone through these sorts of fun ritualistic ruminations. But I’m still figuring out what significance I want to assign to it. Should I consider it the point at which I’m, like, “officially” disabled? I mean, it shows I’ve made the 100% commitment, guys. None of this trying-it-on-for-size shit, I’m in this for LIFE! There is great importance to the rituals of markers like a half-life and engaging in whatever internal or external activity feels appropriate to commemorate the event that fundamentally changed a life, catalyzed transformation and initiated rebirth. I also enjoy the mental exercise of memory recall around the past. What are the small details I still can activate in my sense memory? What it felt like to rub my freshly shaved legs against each other. The burn of a hamstring squat at soccer practice. The feel of the first time my hair was washed in 40

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the hospital. The difficulty of the early “endurance runs” pushing my chair. The intensity of the emotional tsunami that enveloped me for the initial months and years. It’s akin to when I’m performing as an actor, and I situate my consciousness into my character’s, challenging my brain to upend its current reality and connect with moments from another time and place. There can be delight in the exploration of “what was,” “what if,” and “what could have been.” It’s what has given us artistic masterpieces of imagination … everything from Our Town to superhero comics to Groundhog Day (which, yes, is a masterpiece). But I do say, “caution, self.” Because in looking back to an era that was, there is always the risk of crossing over the threshold — where a mental exercise rooted in cognitive pliability devolves into a psychological rabbit hole. I have to be careful of slipping from a place of fond recollection or introspective curiosity into the perils of unhealthy comparison, where the lens of loss takes over. It is easy for the Deficit Trolls to sneak in and vomit their negativity all over my mental exercise. They stab their knives of vindictiveness into my heartstrings, and weave my memory into a cloak that makes me feel bad. They shriek laments of what my life is now. They open their tarpots and paint an unrealistically beautiful picture of life without SCI, while simultaneously slopping it all over my list of physical, psychological

“The purpose of the ritual is not to lament or judge. Rather, to recount the moments of pain, struggle, growth, difficulty, sadness, triumph — all in appreciation of what has been built, here and now.”

and emotional accomplishments of the last 20 years. Yah, F-U little trolls. I have to maintain a clear sense of the purpose of the ritual … that looking back is not to lament or judge. Rather, to recount the moments of pain, struggle, growth, difficulty, sadness, triumph — all in appreciation of what has been built, here and now. We need to do this to remind ourselves of the shitstorm — sometimes literal — that we made it through and the fortresses we’ve become. And I don’t care who you are reading this or whether it’s been 20 years for you, or three months. You’ve done it, baby, something incredible that no one can ever take away from you. So, I will propose a new “what if.” What if we dare to believe that exactly how we are, right now in this moment, is the only possible version of a human being that we could ever possibly have been? And the best? What if, in looking back, it is only to celebrate the countless moments and experiences that did exactly what they were supposed to do in making us into the complex human

that we are in this instant? Everything we have lived — survived — is ours. No more lamenting the building blocks of our personal humanity. Instead, celebrate. Give credit. Honor yourself. Perhaps you, too, remember the fire department pulling you from a mashedup car, and the lonely nights amongst your thoughts with the background din of a heart monitor, or the long, arduous process of emerging and navigating the world with a completely novel identity. Perhaps you, too, have … Fallen in love and had your heart broken. Exploded with laughter beside soul mates and strangers. Visited unforgettable places from underground golf courses in Denver to karaoke bars in Japan and desert oases in Dubai. Written a play, directed a film, painted an art piece or crafted a song. Been drunk, dropped, drenched, dressed, drawn, drugged, and in drag. Learned that failure doesn’t ruin the rest of your life, and often makes it better. Wondered at times “how will I ever survive this,” and then you did. Grown closer to family and friends, and apart from others. Become an insider in a club of wheelers who, regardless of personal familiarity, get you. Been challenged to grow, expand, and lead, and also to pull back and let go. For the sake of the ritual, I will tell you that these last 20 years have been filled with so much. Triumphs. Failures. The best of times, the worst of times. All the things that make for a complete life. I’ve gotten up each day and lived. And so have you. And that’s what I plan to continue doing. And so will you. Because after all, if you’re reading this, you ain’t dead yet. So anything is possible. One more “what if”: What if we challenge ourselves to celebrate every piece of that past in order to guide us

forward for the hours, days, years we still have to fill? There are still chapters waiting to be filled with adventures, micro and macro. No need to wait until July 31, 2022, at 7:30 a.m. Mountain time. Because if we haven’t learned anything else from navigating life on wheels, we know that things can change in an instant. Life is precious … and short. We all choose how we are going to

live our lives. As much as sometimes people try to take that power from us, it’s ours. If we’re living backward rather than forward, pining for what was or trying to get back to some rose-colored idea of what we remember, or dwelling in the troll tar-muck of what is no longer, we’re missing the possibilities that remain right in front of us. Let’s celebrate the past for what it is and get on with it. Time’s a’tickin.

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LAST WORD

WHAT TO WATCH FOR ON NEWMOBILITY.COM

SPINOUTS

Here’s a peek at some of the web stories we’re working on for March and April.

ZEN AND THE ART OF SKYDIVING John Beer’s moving tribute to his first skydiving instructor reminded us of “Jarrett Martin, King of the Sky,” by Ellen Stohl. The December 2014 story introduced us to Martin, a sky diving competitor who became a T3 para after a jump went bad: “When he first returned to skydiving, he described himself as a ‘stupid-little-inspirationalpunk-kid.’ Today, he says, ‘I have tamed down quite a bit at 23, but I’m still a kid for sure. Now I would describe myself as deep, contained, daring, adventurous and professional. Other people like to call me inspirational. But I don’t think it is that inspirational to keep doing what you love. I had a pretty kickass life. I still have a kickass life. ‘I’m doing everything now that I wanted to do before the accident and more.’” Read the rest at newmobility.com/jarrett-martin

Beijing Paralympics — We’re as excited about the Winter Paralympics as you are, and you can count on us for ongoing coverage of the games. The competition starts March 4 in China and Senior Editor Seth McBride — a Paralympian himself — is putting together a guide so you can plan your viewing schedule and stay abreast of all the big storylines. Gear Guide: Handrims — We’ll help you make sense out of all the different handrims on the market so you can choose the best option for your needs. Best/Worst: Concert Venues — It took a lawsuit to improve accessibility at Red Rocks Amphitheater in Colorado, but Kirk Williams writes that after some muchneeded improvements, it’s one of the best accessible music venues in the world. Ignorance vs. Ableism — A collection of essays from disabled writers looking at the difference between ableism and ignorance and how both intersect with our lives. NM Live — Teal Sherer’s interview series has a new truly live format on Instagram. Don’t miss her insightful and fun chats with disability community members. Follow @NewMobilityMag on Insta or view the shows later on our Youtube channel, youtube.com/NewMobilityMedia.

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New Mobility Magazine Mar-Apr 2022

Articles inside

ACCESSIBLE SKYDIVING

THE DEALERS

LIVING WITH SPASTICITY