FA L L / W I N T E R 2 0 2 1
THE ARTS & CULTURE ISSUE tracing the history (and future) of disability rights with jim lebrecht and judy heumann
Behind the Music go behind -the-scenes to learn more about making live events accessible for all
Presented by
Pro Tips for Travel ensure your chair is protected during holiday travel
A Work of Art how three nonprofits are creating beauty, inclusion and access
Respect Excellence
Honor
HEARTS
Service
Teamwork
Accountability
Our values create a community that is stronger together. We believe it’s an HONOR to live, work, and laugh alongside people who love and support each other — no matter what.
We believe in the pursuit of EXCELLENCE within ourselves and each other. It’s improving ourselves a little at a time while lifting each other up.
We believe ACCOUNTABILITY equals community. We promise to never let ourselves or those we care about give up – failures do not define us, but make us stronger.
We believe
RESPECT means more than just good manners.
We believe no one should have to face their challenges alone. TEAMWORK isn’t just working together to do better — it’s working
together to be better.
It’s an expression of love and believing every human being deserves to be treated like one.
We believe a spirit of genuine, compassionate SERVICE is embedded into who we are. It means being there when our neighbors need us and doing our best to make their lives better, starting today.
FALL/WINTER 2021
contents FEATURES
INFORM
14 crip camp
8 a better way to pay
20 behind the music
12 made to move
The Academy Award-nominated documentary “Crip Camp,” explores how far disability rights have come—and why there’s work still left to do.
Austin Whitney answers our questions about planning accessible live events all can enjoy.
24 moving beyond one
size fits all Learn how a Parkinson’s diagnosis spurred the creation of the first adaptive high-end cosmetics line.
Current research is shaping the future of the healthcare payment model.
Artfully designed wheel covers are bridging the gap between disability and fashion.
22 pro tips
for travel Help protect your chair during holiday travel.
32 seat elevation
14
Explore the benefits of seat elevation.
EMPOWER 10 make your voice heard Be your own hero when faced with an insurance denial.
28 the world
needs you As a caregiver, Jen Dean understands the reality of life with a disability. It’s why she knows the world needs YOU.
24 Cover collage comprised of images Courtesy of Netflix, ©iStock.com/natasaadzic and fine art by Desiree Lange
12
20
INSPIRE 4 heart to heart
Get to know four members of the NSM community who making the world a better place.
20 the hearts
of nsm champions Meet five NSM employees who put the “art” in “heart.”
30 the work of art
Three nonprofits are creating beauty by promoting inclusion and access for all.
DEPARTMENTS 2 ceo's note 34 fall park exploration 36 let's get social 40 leading your best life
CONTRIBUTORS
Alaina Leary is a program manager at We Need Diverse Books and a children’s book reviewer for Booklist. Her work has been published in the New York Times, Good Housekeeping, Refinery29, Cosmopolitan, Teen Vogue, Washington Post, Healthline, and more. She lives with her wife and three literary cats outside of Boston, Massachusetts.
Paralyzed in a car accident when she was 14, Ashley Lyn Olson began wheelchairtraveling.com in 2006. The mission: to empower people with limited mobility to access and experience the world of leisure and adventure travel. In 2015, Olson formally launched the Access 2 Parks Project.
Sylvia Longmire is an awardwinning accessible travel writer, a service-disabled Air Force veteran, and the former Ms. Wheelchair USA 2016. She travels around the world, usually solo, in her power wheelchair to document the accessibility of her destinations. She is the author of four accessible travel books and the creator of the Spin the Globe accessible travel blog.
Madison Lawson is a journalist, model and writer. She has written for a variety of publications including Vogue, Glamour, COOLS, Teen Vogue, Allure. She also serves as an editor for Cripple Media, a media company composed entirely of writers and artists who have disabilities.
Cultivating Creativity At National Seating & Mobility, creativity is ingrained in our DNA. From finding creative solutions for our clients to pursuing and promoting innovative approaches in all areas of our industry, we want to cultivate a culture that values creativity, originality and inspiration. In this issue of Let’s Get Moving, we’re exploring creativity and expression in all its forms and sharing stories of innovators and creators who inspire us. We’ll go behind the scenes with Crip Camp director Jim LeBrecht and disability rights activist Judy Heumann to explore how Camp Jened shaped disability rights advocacy. We are also sharing conversations with Rob Mendez, the 2019 recipient of the Jimmy V Award for Perseverance at the ESPYS, and Austin Whitney, who’s exercising his creativity to help make music festivals and live events accessible to all. From books to fashion and fall hiking advice to tips for protecting your wheelchair during air travel, we hope the Arts & Culture issue inspires, informs and encourages you. At NSM, we deeply believe that we are a community that is stronger together—and the world needs your creativity. Whether you’re an artist, writer, musician, designer, scientist, researcher, strategist or creative problem-solver, our world is better when your voice and work is heard and seen. At NSM, we’re committed to playing a part in ensuring that happens.
Sincerely,
Bill Mixon Chief Executive Officer, National Seating & Mobility
Let’s Get Moving Vol. 1, No. 2 Fall/Winter 2021 Editorial Director Stephanie Buckley Vice President, Marketing National Seating & Mobility
Editor Mandy Crow Alday Public Relations
Content Development Alday Public Relations 305 Seaboard Lane, Suite 309 Franklin, TN 37067 615-791-1535 aldaypr.com
Art Director/Designer Ashley Spear 5by5 Agency
Creative Development 5by5 Agency 5210 Maryland Way, Suite 200 Brentwood, TN 37027 615-595-6391 5by5agency.com
Let’s Get Moving is published by National Seating & Mobility, North America’s largest provider of comprehensive mobility solutions. Have a suggestion or interested in writing for the magazine? Send your ideas and writing samples to Mandy Crow, editor, at 305 Seaboard Lane, Suite 309, Franklin, TN 37067 or mandy@aldaypr.com.
National Seating & Mobility 302 Innovation Way, Suite 500 caricature by wayne cater, an nsm employee. learn more about the artist on page 38.
2 | Let’s Get Moving
Franklin, TN 37067 nsm-seating.com
The iLevel® Difference THE WORLD IS NOT DESIGNED AROUND SEATED HEIGHT. Unfortunately, wheelchair users have been excluded for far too long from many everyday tasks and interactions beyond their physical reach. iLevel® Power Adjustable Seat Height is a feature that can dramatically increase the quality of life for wheelchair users.
If you have a condition that affects your mobility and makes it difficult to complete daily activities, iLevel may be right for you! Available as an option on the Edge 3 Stretto® Power Chair, iLevel offers greater access and increased confidence. With iLevel, you can elevate the power chair’s seat up to 12 inches and drive at 3.5 mph while elevated. Designed for children, teenagers and adults, the Stretto’s narrow width allows you to easily maneuver around the tight corners of your home, while iLevel gives you access to bookshelves, closets, kitchen cabinets and more.
Built with Extra Stability Technology® for enhanced safety, iLevel is perfect for completing Mobility Related Activities of Daily Living (MRADLs), such as cooking, grooming, transferring, toileting and reaching. In addition to performing routine activities around the home, consumers can feel confident in their daily interactions as they have eye-to-eye conversations with friends and family. iLevel offers benefits outside the home as well, such as navigating crowded grocery stores or accessing high-top tables at restaurants. From in the home to out in the community, iLevel technology can help make life safer and make social interactions more fulfilling. Learn more about iLevel today!
quantumrehab.com/ilevel-power-chairs/
we wou ld like to than k quantu m for sponsoring this article .
Heart to Heart personal stories that inform, inspire and empower
SHANNON DEVIDO Shannon DeVido’s career began at just 7 years old during a school production. Since then, her impressive resume has expanded to include notable acting, comedy, singing and writing projects.
“If it’s something you want to do, follow your passion because you will be miserable if you don’t. Commit to it but know it’s going to be hard.” 4 | Let’s Get Moving
Film photos courtesy of Best Summer Ever
“When I was in elementary school, everyone had to be in the plays. It wasn’t a choice,” said DeVido. “I played an adult townsperson in ‘The Pied Piper’ and the person playing my child was at least four times taller than me. As I grew older I realized performing was what I was meant to be doing.”
“I really think that if you’re able to see yourself represented in a positive and inclusive way, that will reflect what you feel in real life.”
DeVido graduated with a degree in music business, then pursued acting as a career. As she progressed through young adulthood, she grew to love comedy and comedic acting most of all. So far, DeVido’s impressive resume includes recurring roles on Hulu’s "Difficult People," Netflix’s "Insatiable," guest starring on NBC’s "Law & Order: SVU," and many more. Her career wins haven’t been easy to achieve, and DeVido is still working toward achieving success.
“This industry is very hard,” shared DeVido. “There are times you wonder whether or not you should keep going. If it’s something you want to do, follow your passion because you will be miserable if you don’t. Commit to it but know it’s going to be hard.”
Headshot Photo by Phil Provencio
While many aspiring performers consider the industry to be challenging, DeVido says, being a disabled performer adds an even greater element of difficulty. She hopes the industry will continue to evolve to include more people with disabilities both on- and off-screen. “What we see on-screen reflects how we’re treated in society,” she said. “I really think that if you’re able to see yourself represented in a positive and inclusive way, that will reflect what you feel in real life. The industry needs to focus on writers, producers and creating content that is a better representation for disabled characters who represent members of society.”
Catch DeVido’s recent starring role in Hulu’s Best Summer Ever, a film with an inclusive cast and crew featuring more than 50% of actors with a disability. Follow along on Instagram for more, @ShannonDeVido.
Let’s Get Moving | 5
ROB MENDEZ Rob Mendez recently released his first book, Who Says I Can’t. Mendez, the recipient of the Jimmy V Award for Perseverance at the 2019 ESPYS and the new offensive coordinator at Francis Parker High School in San Diego, hopes the memoir will encourage readers to look for possibilities rather than barriers.
What’s the story behind the book’s title? The first time I remember [using that phrase] was at an eighth grade dance. I was going to go up to a girl and ask her to dance. I started doing some donuts around her, and she started wiggling and dancing. I remember looking back at my friends and saying, “Oh, yeah? Who says I can’t?” So that’s where it started. Throughout my life, I’ve used that mantra to relate to other life aspects like jobs and anything I wanted to do.
What do you hope readers gain from reading your story? Focus on what you’re able to do instead of what you’re not, because we all have disabilities and abilities. I would love to hear people start changing the word “disability” to “different abilities.” [This book was a way of ] expressing my journey of living a life without arms and legs, yet receiving life as a beautiful opportunity instead of a disability.
Tell us about your new job. I’m the varsity offensive coordinator at Francis Parker High School here in San Diego. It’s an independent private high school. I'm very fortunate and blessed for this opportunity to be able to work with a former NFL football player, Steven Cooper, who is the head coach. He hired me as the offensive coordinator … and we’re installing a new playbook. It's been challenging to really install a new system with these kids who have been in their system for the last three years, but they're getting adjusted and doing a really good job.
“Oh yeah? Who says I can't?”
WANT MORE? Rob’s book, Who Says I Can’t: The Astonishing Story of a Fearless Life, released on Sept. 7. Get your copy at Amazon.com or anywhere books are sold.
6 | Let’s Get Moving
KIM OCAMPO
Fighting for Accessibility In 2018, Zoey Harrison became a viral sensation, nicknamed “the girl who saved recess” because of her family’s invention of a coat specifically designed for wheelchair users. These days, the 12year-old is going by another title: Miss Wheelchair Michigan. Zoey, who lives in Ithaca, Michigan, was crowned in November 2019. Despite the global pandemic, Zoey has stayed busy in her role, which is expected to be extended throughout 2021. “She’s raised money for a local animal shelter,” said Jennifer Harrison, Zoey’s mother. “She’s done bake sales and recently delivered a check to Lori's Voice, a nonprofit out of Coopersville, Michigan. She’s also working on some bills with Graham Filler, our state representative.” The legislation is focused on making family restrooms in Michigan more accessible. “They have the ADA recommendation for how large a bathroom should be, which is fine and dandy if it’s someone without a power chair,” Jennifer said. “There’s room for a chair and that’s it. There’s not room for someone to assist.” The Harrison family began their adaptive clothing line, X-Ability, when Jennifer invented the Bodycoat to keep Zoey warm at recess. Created as “an extension of the wheelchair,” the coat features universal openings designed to fit a variety of wheelchair types and models. Randy Malcolm, assistive technology professional with NSM, shared measurements for a number of wheelchair models, which helped Jennifer determine the best design. The Harrison family’s patent for the Bodycoat’s design was approved in early 2021. Learn more at XAbilitystore.com
Song and Dance Kim Ocampo has always lived an active life, and her accident didn’t change that. “When I was younger, my dad and I used to teach, perform and compete in salsa,” Ocampo recalls. “It was Zafra, the Colombian style of salsa, full of quick steps, and your legs were moving nonstop. And we used to perform six minute songs!” In 2015, Ocampo was riding her bike in downtown Miami when she was struck by a car, resulting in a spinal cord injury and a traumatic brain injury (TBI), followed by a stroke. After months of rehabilitation, physical therapy and exercise became vital parts of Ocampo’s life. Ocampo recently took part in the first-ever Freestyle and Showdance Online Competition organized by World Para Dance Sport. She’s found time to pursue a new interest: bodybuilding. In March, Ocampo learned she has several herniated, tearing and bulging discs. She’s hoping that strengthening her core will help provide relief and help prevent future issues. “I met Rachel Daniels, who is my age and has scoliosis—she has more rods in her back than I do—and she is a professional bodybuilder,” Ocampo says. “She’s now my trainer. We’re a couple months in and are focusing on building good habits, then we’ll work on building muscle.” Coming to terms with her accident is something Ocampo says she’s still working through—and will be for the rest of her life—but her zest for life has never wavered.
ZOEY HARRISON
“I want to be happy and make others around me happy,” she says. Let’s Get Moving | 7
Finding a Better Way to Pay mark schmeler (ph. d., otr /l, atp) is the lead investigator of a federally funded grant seeking to find a better way to pay for complex rehabilitation technology (crt ) equipment, in addition to his work as an associate professor and vice chair for education and training at the university of pittsburgh. we spoke with him to learn more about the grant, the goal of his research and how he hopes it shapes future policy.
How could a different approach benefit Let’s Get Moving readers? There are many reasons why wheelchairs fail, but one of the main reasons is maintenance. Part of the policy we’d like to see is that when a wheelchair is provided to someone, the payer is willing to incorporate the cost of maintenance, almost like a bumperto-bumper warranty. So then we could be proactive about what might need to be maintained on your chair before it fails.
How could you see your research shaping eventual policy?
[This grant] is centered on finding a better way to cover wheelchairs in a contemporary healthcare payment model. At the end of five years, the goal is to have a model plan that has been tested [through simulation]. We are taking a large sample of cases and examining how services were delivered under a traditional policy and then comparing it to a more innovative policy to see if it would have resulted in better results, fewer expenses or reduced secondary complications. We are looking at data from more innovative policies that are already in use (like those of Kaiser Permanente), from traditional Medicare and even from our own healthcare plan at UPMC. We want to look at different pieces of policy and see [what has worked well]. Then, we can package those together to create a comprehensive plan, while also providing accurate scientific analysis.
8 | Let’s Get Moving
Join the Conversation Schmeler and his team are in the second year of the five-year grant. In future issues, you’ll get a chance to participate in their research through an online survey. More information will be available in the next issue of Let’s Get Moving.
NatashaFedorova. Depositphotos.com
How would you describe the grant and its goal?
Right now, the policy is that you can get a specific chair if you have a certain diagnosis. We want policy coverage that’s based on the individual themselves—yes, your diagnosis does account for what would be appropriate— but you have to look at other factors, like where you go and what you do. We’re trying to come up with a method that would classify people based on them as a whole to justify what type of device they need. That’s something the clinical community has wanted to do for a long time, but it’s a pretty daunting, timeconsuming process. This grant gives us the time and money to do that.
AVIVA STORM RX Rear-Wheel Drive Reimagined The new Invacare® AVIVA® STORM RX™ Power Wheelchair with the UltraLow Maxx Power Positioning System was developed with the customer experience in mind and brings new features to enhance the user, provider and clinician experience. The Invacare AVIVA STORM RX Power Wheelchair is an innovative leap forward in rear-wheel drive power wheelchairs and a perfect complement to our robust portfolio of power wheelchairs including the AVIVA FX (front wheel drive) and the TDXSP2 & ROVI A3/X3 (center wheel drive chairs).
The AVIVA STORM RX is targeted for users who travel outdoors but also need the maneuverability for indoors. It is intuitive to drive and is an easy transition for people that move from a manual wheelchair to a power wheelchair.
FOCUSED ON DESIGN
FOCUSED ON TECHNOLOGY
FOCUSED ON PERFORMANCE
With its sleek base, the flared front end supports use of the center mount foot platform for overall turning radius reduction, enables the legs to tuck under the chair up to -7˚, allows a user to get closer to their environment, and facilitates easier stand pivot transfers.
Rehab-redefining LiNX® technology continues to enhance the set-up process with new and improved features. From pre-set programming parameters, to live wireless programming, to integration with ASL specialty controls, set-up is as simple as turning on the LiNX remote.
With a short wheelbase and narrow width, the AVIVA STORM RX gives a compact base footprint for excellent maneuverability. At the same time, users can choose between a 5.8 mph or 7.5 mph high performance motor package.
“When I’m looking at a rear wheel drive power chair I’m looking for ground clearance, suspension, power/torque and ease of use in the home.”
What Impressed You About the NEW AVIVA STORM RX? Submitted by: Carey J. Britton, ATP/SMS, CRTS 29+ Years in Rehab | Ft. Lauderdale, FL
OVERALL SIZE - Narrower than most and an exceptional turning radius in a rear wheel drive chair
ABILITY TO USE CENTER MOUNT FOOTPLATE - near 90º leg/foot positioning on rear wheel drive chair, due to offset casters
ABILITY TO HAVE OUTBACK ARMS - which I have found to be very helpful in getting arm support/positioning
NO MORE RATTLING REAR CASTERS - is an issue with some other chairs
16.5" STF TO START - Helpul for smaller stature individuals
LIGHTS (BONUS!) - to have lights that are protected and functional are a huge asset we wou ld like to than k invacare for sponsoring this article . we wou ld like to than k invacare for sponsoring this article .
Make Your Voice Heard an insurance denial can be devastating, particularly when it’s for the complex rehabilitation technology (crt ) that keeps your daily life in motion. but even when you ’re faced with a refusal to cover the equipment you need to live life to the fullest, you can take steps to advocate for yourself. be your own hero! here’s how.
1 Make an official complaint. If your insurance provider denies your claim, the first step is to file an appeal with your insurance company. Consult your care team as well as your insurance company’s website for information on how to file an appeal. You can also file grievances or complaints with various city and state departments (look for the department of health or offices with a focus on those with disabilities) or your state’s attorney general. | naag.org/find-my-ag/
3
2 Do some research. City and state governments often have departments that provide resources to those in the disability community. Local organizations and advocacy groups may also be able to guide you. The Administration for Community Living website provides detailed information regarding state aging and disability networks as well as protection and advocacy groups. | acl.gov
Reach out to your representatives. Contact your elected officials at both the state and federal level, share your story and ask for their help. If you need help finding their names or contact information, consult USA.gov. | usa.gov/elected-officials
4 Nothing about this process is easy, comfortable or fun, but you are your own best advocate. Only you and your care team can fully explain how the denial affects your daily life, and it may take a while to make your voice heard. If you have questions, frustrations or concerns, don’t hesitate to reach out to your seating and mobility clinical team.
—Gerry Dickerson, ATP, CRTS®, contributed to this article.
10 | Let’s Get Moving
©iStock.com/Natalia Smuriakova
Be persistent.
Your World Within Reach Face your daily tasks head-on with Permobil’s ActiveReach and ActiveHeight. It’s amazing how much your access is improved with just 20° of forward tilt and up to 14” of seat elevation! Think of all the ways you can use this enhanced positioning: • Giving someone a hug • Accessing smartboards at school or work • Getting closer to your sink, fridge, or stovetop • Increasing your knee clearance for fitting at a desk or in an accessible van • Reaching the ATM or elevator buttons • Adapting to different bed or surface heights for easier transfers Did you know that ActiveReach provides you with up to 4.5” of additional reach? It’s the forward tilt that makes the difference! This also helps by putting your body in a more engaged and active position instead of being positioned sideways to the task at hand. The seat can tilt forward from 5-45° depending on the Permobil chair model and ActiveReach package you choose. “The more features you can have, the more things you’re able to do, the better life that you’re able to live,” says Cyndi Leach, Permobil F5 Corpus user.
FORWARD TILT PLUS SEAT ELEVATION HELPS YOU REACH FOR MORE! Permobil’s ActiveHeight is unique to all other wheelchairs’ elevation because your seating system actually repositions 3.5” backwards to maintain optimal forward stability and allows you to get closer to objects. Perfect for reaching items on a higher shelf while grocery shopping or at work. Choose Permobil’s M & F-Series wheelchairs for a difference you can see and feel.
we wou ld like to than k permobil for sponsoring this article .
Scan to learn more about Permobil’s ActiveReach & ActiveHeight today!
MADE to
Created by Irish sisters Ailbhe and Izzy Keane, these artfully designed wheel covers allow you express yourself in a style that’s all your own. With tons of designs to choose from, these unique accessories turn your wheelchair into a statement piece.
move photos by sar ah doyle
12 | Let’s Get Moving
“Izzy Wheels empower wheelchair users to make a statement about themselves. Having stylish wheels on your chair that match your outfit or show off your interests immediately addresses the chair and opens conversation.” — Izzy
Wheel Art by Craig and Karl
Wheel Art by La Scarlatte
Wheel Art by Hola Lou
Born with spina bifida, Izzy has used a wheelchair all her life. Since they were children, Ailbhe has been dressing up Izzy’s wheelchairs with crafty creations of her own. Today, they have collaborated with more than 90 well-known designers and brands, including Disney and Hello Kitty. Izzy Wheels is bridging the gap between disability and fashion, making the world a more inclusive place. | To see the selection and/or purchase a wheel cover, visit izzywheels.com
Wheel Art by Lucy Tiffney
Let’s Get Moving | 13
the disability rights movement was born at a camp run by hippies
by al aina le ary
“I’m very tired of being thankful for accessible toilets. If I have to be thankful for an accessible bathroom, when am I ever gonna be equal in the community?” When Judy Heumann poignantly asks that question in the 2020 Academy Award-nominated documentary Crip Camp, the camera lingers on Heumann’s face. The directors didn’t hurry, but instead chose to give viewers time for Heumann’s words to sink in.
Photos courtesy of Netflix
Because even in a documentary recounting how far we’ve come, directors Nicole Newnham and James LeBrecht know there’s still work left to do.
14 | Let’s Get Moving
Camp Jened itself was a pivotal moment for the disability rights movement because that community, where campers could finally participate without barriers, inspired many of them to fight for a society with fewer barriers—a world that looked more like Camp Jened.
A LIFE-CHANGING EXPERIENCE The film, which also garnered a 2021 Peabody Award, spans five decades, beginning in 1971 at Camp Jened, a summer camp in the Catskills for disabled people. “I knew there was a story here that was going to be lost to time if it didn't get told,” says LeBrecht, who has been a sound mixer for documentaries for more than two decades. “There were two factors in wanting to make the film: not seeing [a] documentary that would hopefully speak to the disability experience through the lens of people with that lived experience and trying to reframe what disability means for people with and without them. [Camp Jened was] this incredible experience that captured that.”
Personally, LeBrecht says, Camp Jened challenged how he had allowed public perception of disability and disabled people to shape how he viewed himself. “Getting the sense that people [at Camp Jened] were proud of who they were and that disability was nothing to be ashamed of was life-changing,” LeBrecht says. He had never experienced that anywhere else.
Photos courtesy of Netflix
LeBrecht understood that the power of Camp Jened, an accessible space designed for disabled kids, teens and adults to just
be themselves, went beyond the imagery of campers playing baseball or participating in the usual summer camp activities. Camp Jened itself was a pivotal moment for the disability rights movement because that community, where campers could finally participate without barriers, inspired many of them to fight for a society with fewer barriers—a world that looked more like Camp Jened.
Let’s Get Moving | 15
That 28-day sit-in is detailed in the documentary. Part of the Rehabilitation Act of 1973, Section 504 prohibited discrimination against people with disabilities in programs or services that receive federal funding—but regulations defining what that meant had been delayed for years. Scholars and disability activists alike widely recognize Section 504 as a necessary precursor to the Americans with Disabilities Act of 1990.
In the 1970s, LeBrecht recalls, many disabled people began to move from New York to Berkeley, California, “recreating our community that we found in camp but in much better circumstances.” Many former Jened campers, living in Berkeley and across the country such as Heumann, Bobbi Linn, and LeBrecht became disability activists. Jenedians, as former campers are also called, were heavily involved in the 1977 Section 504 sit-in in San Francisco, which LeBrecht calls “a very important story for our community.” “It still to this day is the longest non-violent takeover of a federal office,” says LeBrecht. “We were really fighting to get some kind of civil rights protection.”
16 | Let’s Get Moving
The lessons Heumann and others had learned at Camp Jened challenged that mindset.
We were really fighting to get some kind of civil rights protection. “Camp Jened was cross-disability in a number of interesting ways,” Heumann recalls. “At that point, for two summers, there were three Deaf teenagers who were in my bunk. That was the first time I'd ever met any Deaf people.” Heumann’s fellow campers began teaching her American Sign Language, even though the camp’s speech therapist warned it would discourage deaf campers from learning to read lips. Moments like these, Heumann recalls, taught the Jenedians about the vitality of crossdisability rights.
Photos courtesy of Netflix
TRACING THE CAMP JENED EFFECT
The Camp Jened experience also shaped other aspects of the disability rights movement. According to prominent disability rights activist Heumann, a former Jened camper and staffer, the 1970s reflected an “emerging disability rights movement,” but the work wasn’t centralized. While numerous organizations and groups focused on specific types of disabilities, few were working together.
THE PATH FORWARD LeBrecht and Heumann both believe that we have come a long way since 1971, thanks largely to representation in the media as well as legislation that makes it possible for disabled people to access the world with fewer barriers. But there’s still a lot of work to be done. “Things have changed a little, but the reality is that the average person is seeing disabled people more than before because of all these laws that we've been discussing,” says Heumann. “As disabled people, we see ourselves reflected more than in the past. But we're still pretty absent.” LeBrecht agrees, stressing the importance of opening doors across the entertainment and media industries to disabled people, including journalists, television writers, producers, filmmakers and more. “If the media doesn't change and employment doesn't improve within the entertainment business, the stories are going to continue being the old tropes of tragedy or overcoming adversity,” he explains. “I think Crip Camp has really helped to show the entertainment industry that there are unique, unknown, and compelling stories within the disability community. People with disabilities are just as creative and capable as anyone else to create and produce these films and television shows.” Access barriers weren’t completely erased by the passage of the Americans with Disabilities Act. Air travel is still a major concern, especially for wheelchair users. Research shows that before the decrease in travel due to the COVID-19 pandemic, airlines reported 29 damaged, lost, delayed, or stolen wheelchairs
on average per day. Additionally, the low asset and saving limits of Supplemental Security Income for disabled people forces individuals to stay in poverty. Heumann believes that the keys to change are collaboration and cooperation. It’s critical, she says, for disabled people from different industries to meet each other and connect.
As disabled people, we see ourselves reflected more than in the past. But we're still pretty absent. LeBrecht agrees, stressing that networking opportunities and social events need to be accessible, because these are often the places where real community is built and as a result, change happens. “If my way of getting into the industry is a) being able to attend networking events and b) being able to lift that box of 20-pound printer paper, you're filtering out a whole bunch of people who could be incredible talent on your crew,” he says. “Networking events need to be accessible.” The work is moving forward. Organizations such as FWD-DOC, 1in4 Coalition, and Disability Media Alliance Project are creating change for disabled people in the entertainment industry. Netflix really stepped up in terms of accessibility for Crip Camp, LeBrecht says, by offering audio description in more languages than they ever had before, captioning in more languages, and providing the option to download the transcript of the film, for Braille readers, a suggestion from Haben Girma. These are all positive steps forward, LeBrecht says, but he hopes they point to a change in peoples’ hearts rather than additional legislation.
Photos courtesy of Netflix
“You can pass a law but as long as you don't change society's view, it's not going to do a lot,” LeBrecht says, quoting Denise Sherer Jacobson’s words from the documentary.
Let’s Get Moving | 17
A Brief History of
Disability Rights
1951 Camp Jened opens
1990s 1990 Capitol Crawl of 1990: Sixty activists with disabilities climbed up the 83 steps of the U.S. Capitol to protest to their rights not being protected.
1990 Americans with Disabilities Act passes, guaranteeing disabled people unrestricted access to public buildings, equal opportunity in employment, equal access to government services and employment opportunities.
18 | Let’s Get Moving
1964 Civil Rights Act of 1964 passes, outlawing discrimination based on race, color, religion, sex, national origin. Sexual orientation and gender identity were added later.
1988 Fair Housing Act amended to protect people with disabilities from housing discrimination and more.
1998 Section 508 amends earlier legislation to require federal organizations to make their electronic and information technology accessible to people with disabilities.
Clockwise from top: Patrick Carlson / Alamy Stock Photo; American Photo Archive / AlamyStock Photo; Realistic Reflections / Alamy Stock Photo ©iStock.com/Matt Anderson; Courtesy of Netflix
1960s
1950s
1973 Rehabilitation Act of 1973 prohibited discrimination against people with disabilities in programs or services that receive federal funding through Section 504. 1977 504 Sit-Ins begin
Clockwise from top: Courtesy of Netflix; Science History Images / Alamy Stock Photo; ©iStock.com/FatCamera; ©iStock.com/Debbie Eckert; Kirn Vintage Stock / AlamyStock Photo
1970s 1972 Independent Living Movement begins with the Berkeley Center for Independent Living in Berkeley, California.
1980s
1986 Employment Opportunities for Disabled Americans Act of 1986 enhances work incentives for people with disabilities under the Supplemental Security Income (SSI) program.
1978 Rehabilitation Act Amendments of 1978 establishes the first federal funding for independent living centers and creates the National Council of the Handicapped.
2010 21st Century Communications and Video Accessibility Act legislates accessibility standards in digital, broadband and mobile innovations, ensuring broadcast/communications are accessible to all.
2000s
2010s 2004 Individuals with Disabilities Education Act (IDEA) permanently authorizes a grant program that provides federal funding to states to offer a "free, appropriate public education" to all children with disabilities in the "least restrictive environment." Let’s Get Moving | 19
Behind the Music
Austin Whitney is the president of Ten Fifty Entertainment, the leading provider of accessibility and guest services programs for event planners across the country. Whitney started the company in 2014, seven years after a car accident that severed the biggest names in live events, such as Coachella Music and Arts Festival, EDC, Rolling Loud, and the PGA Championship, think through the accessibility needs for their events—all fueled by a passion that everyone should have access to events, regardless of ability.
20 | Let’s Get Moving
© Robert Kohlhuber / Stocksy United
how austin whitney helps make music festivals and live events accessible
What kinds of accessibility issues do you help live event planners think through?
Tell us about yourself and your work. Austin: When I was 18, I was in a car accident that severed my spinal cord. I went to my first music festival about six months after getting out of the hospital and that was the place where I was first able to smile and not be consumed by anxiety, feel self-conscious about my disability or fearful about what my future looked like. So, I kept going to music festivals after that. Having those events to look forward to helped me get through the hardest time of my life. When I was in college, I started working in live music, and then I went to law school where some friends asked me if I could help set up an ADA compliance program for a live event, and [that led to other events]. That's when I realized there might be a place in the marketplace for the service we offered, so I started Ten Fifty Entertainment.
Austin: I'm thinking about everything, going through how people in a wheelchair might be getting to the event. How are they parking? And wherever those locations are, how do they get to the front gate? If [the event involves camping], we need to focus on the accessible shower units. What is the proximity to the entrance? Are there accessible restrooms? Are we gonna need power for somebody with a power chair to charge? … I'm thinking about what happens to this venue when it gets rained on for three straight days. What does that look like for somebody in a wheelchair to get around in the mud? All the things related to disabilities— whether it be sign language interpretation, guided tours or quiet rooms, whatever it might be—these are all aspects of my work.
How can our readers be resources to planners in their communities, no matter the event size? Austin: I think the first step is to present solutions to event producers. I don't spend a lot of time talking with my clients about avoiding legal liability; they want to do what’s right and that’s pretty consistent across the industry. Nobody wants events that are inaccessible. So, I think starting those conversations, being focused and solution-oriented is the right step.
In addition to his work with TenFifty Entertainment, Whitney runs the nonprofit Accessible Festivals, which is dedicated to promoting accessibility and accessibility policies. Learn more about him and his work at accessibilitylive.com. As the official ADA partner of Pilgrimage Festival, NSM recently worked with Austin to make the late September festival fun for all music lovers.
Let’s Get Moving | 21
Pro Tips for Protecting Your Wheelchair for Travel
COVER ANY SENSITIVE PARTS WITH BUBBLE WRAP. This can prevent things like your joystick and control panel from having screens or buttons damaged or snapped off. If possible, you may also want to cover the seat with plastic or a towel in case your chair is left out in the rain during loading or unloading.
by sylvia long mire
Traveling as a wheelchair user can be very exciting and liberating, but also a stressful experience. Some wheelchair users avoid travel altogether because of their biggest fear—damage to their wheelchairs or other mobility aids, especially when flying. Fortunately, there are a lot of things you can do prior to air travel to help protect your wheelchair as much as possible, and ensure an enjoyable experience at your destination. Here are a few tips as we head into the holiday travel season.
REMOVE ANY PROTRUDING PARTS. Things like head rests and foot rests are notorious for being snapped off by careless ramp workers. If there’s any part of your power or manual chair that is removable and can be put into a duffel bag for carrying onto the plane, that is advised.
22 | Let’s Get Moving
©iStock.com/wundervisuals
If you do experience any damage to your wheelchair during travel, make sure you file a complaint as soon as possible with both the airline and the Department of Transportation.
EXTRA TRAVEL TIPS TIE UP OR TAPE DOWN ANY WIRES. This is generally only an issue for large and complex power wheelchairs. The fewer wires that are exposed, the fewer things that can be snagged during loading and unloading and ripped out of their connections. ATTACH CLEAR AND SIMPLE INSTRUCTIONS FOR TRANSPORT. If your chair needs to be folded or placed into neutral for transport in an airplane, it’s wise to have some sort of sign inside a document protector attached to your chair. Make sure the instructions are simple, clear in large letters, and have arrows and pictures. Ramp workers literally have seconds to read them and figure out how to easily fold and move your chair. Depending on where you’re traveling, they may not be able to read English, so make it as easy as possible for them to help prevent damage.
SPEAK TO RAMP WORKERS WHEN POSSIBLE. Wheelchair users are supposed to be some of the first people to board a plane, and whenever possible, I try to talk to the ramp workers directly about how to handle my wheelchair. This isn’t always possible because time is short, but it makes me feel better that they can put a human being in connection with the chair they’re handling. BRING A BASIC REPAIR KIT IN YOUR CARRY-ON. In case there is some minor damage to your chair, it can be helpful to bring things like a roll of duct tape, basic tools like wrenches and screwdrivers, and some zip ties. This can help with temporary fixes until you can get more extensive repairs done.
Make sure you know your rights as a disabled passenger under the Air Carrier Access Act. Finally, just breathe, be ready for anything, and enjoy the adventure of accessible travel!
An avid traveler, Will Fargas understands the struggle of flying with a wheelchair. He’s arrived at his destination to find pieces broken off his chair or the back out of alignment, which Fargas, who has spinal muscular atrophy (SMA), says can impede his independence. In light of his experiences, Fargas offered a few tips to help ensure your flight is as problem-free as possible. FA RGA S’ A DVI C E TO AI R LI N E S:
“Hire more people with disabilities. Would you start an airline without hiring pilots as consultants?” KNOW YOUR CHAIR “Know everything about your chair so that if something does happen, you’ll know how to explain what’s going on,” he says. Fargas recommends getting your chair serviced prior to your trip and after you get home so you can pinpoint damages that occurred during travel. TRAVEL WITH A BACK-UP CHAIR IF POSSIBLE “I’ve done this one a few times,” Fargas says. “It’s helpful when possible.” EXPECT SOMETHING TO HAPPEN “Unfortunately, we often just have to go with the mindset that something is going to happen,” Fargas says. “Brace yourself for the inevitable.” REMEMBER WHO YOU’RE TALKING TO If your wheelchair is damaged during travel, Fargas offers a word of caution when you speak to airline representatives. “When you’re speaking with a customer service representative, know it isn’t necessarily their fault,” he says. REMIND THE AIRLINE YOU’RE FLYING WITH A WHEELCHAIR Yes, you notify them when you buy your ticket, but Fargas suggests checking in with customer service and reminding the airline a few times before your departure.
Let’s Get Moving | 23
Moving Beyond One Size Fits All celebrity makeup artist and educator creates the adaptive luxury makeup brand for people with disabilities by madison l awson
They say practice makes perfect, but for celebrity makeup artist and instructor Terri Bryant, it was feeling like a beginner again that taught her the most. Bryant has a resume to die for, working both in makeup artistry and education for world renowned prestige brands including Dior, Stila, Smashbox, and Josie Maran. After spending more than 20 years in the industry, makeup for Bryant was second nature. She loved being able to create looks that enhanced and brightened the natural glow within her models, and as an educator, she always wanted her clients to be able to replicate the looks that made them feel the most beautiful. “I like a fresh clean look. A tight line with lots of mascara and then soft light touches to enhance the features,” Bryant stated. Having so many years of experience and education in makeup artistry, it was sometimes difficult for Bryant to understand the difficulties her clients faced when it came to replicating her looks. That was until a diagnosis of Parkinson’s, a disorder of the central nervous system that affects movement, caused her to question her own skills when it came to applying makeup. Recognizing that traditional methods of application would no longer work for her unsteady hands, Bryant began to transform the way she looked at applying makeup. She recognized a flaw in the “one size fits all” standard of beauty tools that left women who have disabilities affecting motor function completely unaccounted for. “Designing for precision and stability without difficulty was important,” Bryant said. Bryant worked closely with an award-winning design team and ergonomic experts to develop solutions to design flaws that limited not only disabled women, but women in general when it came to makeup application.
24 | Let’s Get Moving
Passionate about accessibility, we are redesigning makeup application and formulation, all to make it easier for our users.
She named the brand “Guide Beauty” to emphasize tools that quite literally “guide” your hand. Bryant wanted the products to look as luxurious as they feel. She incorporated angular designs with a lightweight product that she wanted to be as comfortable to hold as it is creamy to apply. “We designed tools that don’t require a strong grip, allow for a free hand,” Bryant said, “I wanted to design lightweight tools that can be used vertically without having to hold your arm up for a long time.” It was important to Bryant that the formulas and packaging be luxurious and not compromise accessibility. People with disabilities are finally receiving some of the representation they deserve, on the runway, in design studios, and now in cosmetics with Bryant’s line. Bryant’s makeup line was a first in the adaptive sphere of high-end cosmetics. Not compromising aesthetics and making it equally as luxurious and functional sets a new standard for makeup brands. Some people might have looked at a diagnosis of Parkinson’s as an end to a celebrity makeup artist and instructor’s career, but to Bryant, it was just the beginning of another.
People who have disabilities make up the only minority that anybody could potentially become a part of at any point in their lives. Innovation is vital to survival when you are a member of the disabled community. You constantly have to find ways to accomplish the things that you need or want to do in ways that most people never have to think about. As people, the hardest challenges that we learn to overcome allow us to help others like us more than anything else, from life-hack to luxury. To others receiving a Parkinson’s diagnosis and becoming a part of the disabled community, Bryant stated, “Embrace your community. Allow people in because they are there to support you. Life will throw you things like that, but it will be okay. Something beautiful can come out of this for sure.” Bryant saw her diagnosis as an unexpectedly beautiful gift that has allowed her to look at makeup application from a new angle that she never would have seen before. A new angle that is making applying a winged liner easy again, like magic.
BROW MOMENT
EYELINER DUO
LASH WRAP
Guide Beauty’s all-inone brow product uses a GUIDE ring to steady and guide the hand during application.
An 2020 Allure Best of Beauty Breakthrough Award winner, Guide Beauty’s wand features a replaceable, soft and flexible precision tip and an easy-to-hold handle to steady the hand.
Like Brow Moment, Guide Beauty’s Lash Wrap mascara uses the GUIDE ring for steady application. Let’s Get Moving | 25
Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judy Heumann | Memoir, 2020
Book Club the arts and culture issue wouldn ’t be
Broken Places and Outer Spaces: Finding Creativity in the Unexpected by Nnedi Odkofor | Memoir, 2019
complete without books! check out the following selections, highlighting the voices of those within the disability community.
The Pretty One: On Life, Pop Culture, And Other Reasons To Fall In Love With Me By Keah Brown | Audiobook, 2019
Disability Visibility: First-Person Stories from the 21st Century Edited by Alice Wong | Essay Anthology, 2020
I Will Dance By Nancy Bo Flood Illustrated by Julianna Swaney | Children’s book, 2020
26 | Let’s Get Moving
The Group 2 Power Chair Has Evolved The Jazzy® Power Chair is a household name, one that customers trust. Still, we’re always looking for ways to evolve the Jazzy brand and bring excitement and innovation to the power wheelchair market. Enter the Jazzy® EVO 613 series. The Jazzy EVO 613 series features: • 13-inch drive tires • 3-inch ground clearance • 22-inch turning radius • Per charge range up to 17 miles • 300-pound weight capacity • Medicare reimbursable through codes K0822 and K0823 It has a newly designed, depth-adjustable high-back seat with memory foam, swivel and is available in 16, 18 and 20-inch widths to accommodate most users. The Jazzy EVO 613 series offers multiple color-through matte shroud options.
The Jazzy EVO 613 series provides the freedom to navigate small spaces and tight corners indoors due to its narrow base width of only 22 inches. With unmatched performance, Active Trac® Suspension and Mid-Wheel 6® Technology ensure a smooth ride over uneven surfaces and is powered by two U1 sealed lead-acid batteries, in-line motors. Consumers can enjoy greater access to small spaces and experience a smoother, more comfortable ride than ever before. The Jazzy EVO 613 series of power wheelchairs represents a philosophy we share here at Pride Mobility. We strive for continuous improvement, always innovating and pushing boundaries. For more information on the Jazzy EVO 613 series, visit pridemobility.com/jazzy-power-chairs/jazzyevo-613-li/. *The Jazzy EVO 613 and the Jazzy EVO 613Li are FDA Class II Medical Devices.
we wou ld like to than k pride mobilt y for sponsoring this article .
FDA Class II Medical Device
The World Needs YOU by j en de an
twenty years ago, when jen and barry dean learned their daughter, katherine, had cerebral palsy, they didn ’t really understand what that meant. their journey has been marked by both beauty and struggle. read jen ’s words of encouragement in this excerpt from her longer essay, “ how i learned to navigate the world with my daughter in a power wheelchair.”
I’d like to challenge those of us who use mobility devices to proudly get out in the community. Here are a few thoughts on how to do it—and why it’s so important.
1 Self-generated mobility is not always faster It will take longer to get in and out of a vehicle. It will take longer to get dressed and ready to go anywhere. It is worth it. We need you out in the world. We need you to be seen in the community, so the next generation of kids (and families) who need wheelchairs don’t feel so alone.
28 | Let’s Get Moving
2 Recruit allies Find restaurants and places to go that work with you. Make friends with the staff. Katherine happens to be very social anyway, but the fact that she introduces herself and talks to waiters and store clerks (even though they can’t always make out her words) has become an advantage. Now when we go to one of our favorite spots, they work with us. They’ll have a table set up before I can get her out of the car, and these little things make life just a little bit easier.
3 Accept help Let family and friends help. Recruit them as teammates.Notice the people who make the effort. Appreciate them. They will be your allies and will help open up the world for your family. We have been able to go on family beach trips with our friends and visit their homes because they are willing to brainstorm with us and help us find a way, even when it isn’t easy.
4 Get comfortable being vulnerable Admit to your partner or friends that sometimes it is scary or difficult to maneuver certain public places, but try to keep that attitude away from your wheelchair-using child. Or if you’re reading this and you are a wheelchair rider, I encourage you to try.
WANT TO READ MORE? Read Jen’s entire essay, which includes more of the Dean’s story and a few additional encouragements, by scanning the QR code or visiting nsm-seating.com/blog/
5 Be open to opening YOUR mind As Adam Grant says in his book Think Again, “When we choose not to engage with people because of their stereotypes or prejudice, we give up on opening their minds.” We never know who we’re going to impact. It could be someone who will be motivated to become a therapist or a family that will be affected by disability in the future. You could be showing them that their future isn’t so scary after all.
Jen and Barry are now strong advocates for mobility devices. Barry and his brother are the creators of LUCI, smart technology for power wheelchairs, designed to give riders a safer and more inclusive experience. It attaches to a power wheelchair and uses cloud and sensor-fusion technologies to detect obstacles, prevent drop offs and alert caregivers with important health information. Learn more at LUCI.com. Let’s Get Moving | 29
The Work of Art the arts enrich our lives . from fashion and film to dance or design, the arts challenge, encourage, educate and inspire us . get to know three artsand - culture-focused nonprofits that are creating beauty in various fields as they promote inclusion and access for those with disabilities .
Runway of Dreams runwayofdreams.org
30 | Let’s Get Moving
Runway of Dreams Photo by Abbey Drucker
In 2014, Mindy Scheier’s son wanted to wear jeans to school like his friends. But Oliver, who has a rare form of Muscular Dystrophy, couldn’t manage the buttons or zippers. Realizing a need for fashionable and accessible clothing, the idea for the Runway of Dreams Foundation was born. Since 2018, Runway of Dreams has hosted A Fashion Revolution, an industrychanging fashion show featuring adaptive clothing and models with disabilities during New York Fashion Week with additional events in Las Vegas and Miami. The nonprofit offers scholarships, a summer internship program, wardrobe grants and more.
Easterseals Disability Film Challenge disabilityfilmchallenge.com
Disability Film Challenge
Launched in 2014, the Easterseals Disability Film Challenge creates a unique opportunity for filmmakers—both with and without disabilities—to work together to tell stories that showcase disability in its many forms. During the weeklong competition, filmmakers work together to write, produce and complete a 3- to 5-minute short film, with winners selected by a panel of industry professionals. The nonprofit, founded by actor Nic Novicki, seeks to provide a platform for new and underrepresented voices in the film industry. Since its inception, Challenge filmmakers have created more than 150 short films viewed online and at festivals.
National Arts and Disability Center semel.ucla.edu/nadc A program of the Tarjan Center at the University of California, Los Angeles - Semel Institute, the National Arts and Disability Center is a leading consultant in the arts and disability community and the only center of its kind. The NADC, funded by UCLA as well as federal, state and private grants and contracts, seeks to promote the inclusion of artists and audiences with disabilities into all facets of the arts community through technical assistance, training, professional development, community and vocational activities and more.
Let’s Get Moving | 31
Seat Elevation Seat elevation allows the user to raise and lower the height of the seat of a power wheelchair, using an elevation mechanism often controlled by a joystick or button. While wheelchairs help you get from point to point, seat elevation devices help you move through a three-dimensional world with a little more ease, from reaching tall cabinets to enjoying a conversation with a friend.
BENEFITS OF SEAT ELEVATION: • Easier transfers, especially to uneven surfaces. • Increased reach, making cooking, turning off lights and reaching elevator buttons easier, while lowering the need for home and workplace adaptations. • Less strain by ensuring you’re at a better angle to reach, see or navigate. • Social and psychological benefits such as increased self-confidence and independence. • Increased safety by helping you see more clearly when navigating through a large crowd or crossing a busy street.
So, if you think seat elevation might benefit you,
Am I Covered? Some insurance companies do pay for seat elevation, especially when it is shown to be medically necessary for transfers, reach, access, safety, communication or if it supports an identified vocational or educational goal. These may include Veteran Affairs, worker’s compensation, vocational rehab programs and some commercial payers.
what steps should you take? Talk to your ATP and care team If you use a power wheelchair with a standard seat height and experience difficulty transferring, reaching high enough to access areas at home, school or work or have difficulty seeing to navigate crowds or safely cross the street, you may be a good candidate for seat elevation.
32 | Let’s Get Moving
Document the need
Know your resources
Since all power wheelchairs and recommended options require prior approval, work with your healthcare provider, ATP and other members of your care team to document specific ways seat elevation would benefit you and submit it to your insurance provider.
If your provider does not cover seat elevation, other options may be available. Care Credit, a healthcare credit card that pays for out-of-pocket healthcare expenses, could be a solution, while some patients use crowdfunding. National Seating & Mobility also offers an everyday low price program for self/privatepay seat elevation orders that makes the option more affordable and available to more people.
product spotlight
Quantum Edge 3 Stretto™ • Most narrow, maneuverable power base available • Independent Smooth Ride Suspension (SRS) • Ideal for children, teenagers, small adults • Available with 12.5 or 14-inch wheels and optional 12 inches of iLevel® adjustable seat height also available from quantum: quantum edge 3 with ilevel; quantum 4front 2 power base
Permobil F3 Corpus with ActiveHeight/ActiveReach • Compact size translates to easy maneuverability in tight spaces • Up to 12 inches of elevation when combined with ActiveHeight seating system • Up to 30 degrees of forward tilt technology, making reaching easier, with ActiveReach • ComfortRide suspension reduces vibrations and enhances ride comfort and drive performance. also available with activeheight and activereach from permobil: f5 corpus; m3 corpus; m5 corpus
Invacare Aviva Storm RX Power Wheelchair with Motion Concepts Elevation • Targeted for users who travel outdoors but also need to maneuver indoors • 12 inches of discrete elevation that can be used while driving • Up to 50 degrees of tilt and 170 degrees of recline also available from invacare: tdx® sp2 powerbase; aviva™ fx; rovi a3; rovi x3
QUICKIE Q700 M • 12 inch seat elevation available • When ordered to tilt, recline or elevate, can achieve a seat height as low as 16 inches, making it easier to pull up to tables and desks even when using a thick cushion.
Let’s Get Moving | 33
1
Be prepared.
Fall Park Exploration by ashle y lyn ol son
I love visiting our U.S. National Parks, even if it’s just a day trip. Fall is a lovely time to visit parks as temperatures are nearly perfect. Sometimes, temperatures can be surprisingly warm during the day, but usually drop significantly at nightfall, signaling the coming of winter. If you’re planning a fall hike, here are a few tips to make your plans a reality!
34 | Let’s Get Moving
Fall can be the perfect time to visit the coldest wilderness regions of the country, soaking in the vibrant colors, woody smells and spices of the season. But I have also found that fall is an ideal time to explore desert parks. The heat is less intense. While rain is more frequent during the fall season, it usually doesn’t last long, so come prepared with a proper jacket and treaded tires. Personally, I enjoy hiking in the rain or right after it and don’t mind getting a little dirty—that’s what outdoor gloves and warm showers are for!
2
Pick your location. Being an avid, life-long hiker, it’s impossible for me to recommend only a few parks worth visiting in the fall. There are just too many! Start with the most northern U.S. National Parks, or look at parks in or near mountain ranges. Fall colors in these areas are spectacular. Equally as beautiful are the colors of the American Southwest, home to a plethora of parks, monuments and other outdoor points of interest that include not only accessible overlooks, but accessible trails as well.
“Do a little research on accessibility so you know what to expect and how much time you wish to spend.”
3
Do your research. Before visiting any park, do a little research on accessibility so you know what to expect and how much time you wish to spend. What do you need to plan for? Is there one trail or multiple trails you’d like to hike? A bunch of overlooks? Where are the wheelchair-friendly bathrooms? In addition, park lovers who have disabled parking plates (or placard), qualify for an Access Passport—a U.S. National Park card that gets your vehicle and all inside access into the park. Over any card in my wallet, I value it the most. So, if you don’t have one, get one! Then you are ready to experience the freedom and beauty of our national parks in the fall. Learn more about available passes at nps.gov/planyourvisit.
BEST FALL HIKING Most people can easily find or think of the top parks, like Yosemite and Smoky Mountain National Park, for fall hiking, but Ashley Lyn Olson suggests a few others.
C U YA H O G A VA L L E Y N AT I O N A L PA R K ZION N AT I O N A L PA R K YO S E M I T E N AT I O N A L PA R K
M A M M OT H C AV E N AT I O N A L PA R K
S M O K Y M O U N TA I N N AT I O N A L PA R K
“Mammoth Cave National Park and Cuyahoga Valley National Park are VERY under-rated and exceptionally beautiful in the fall. There are a plethora of national parks and points-of-interests, monuments and landmarks in the Southwest. Among them is Zion National Park with its river and lining trees that change colors against a red rock backdrop in the fall.” Let’s Get Moving | 35
Let’s Get Social! nsm loves seeing your enthusiasm about products
& experiences . share your story with us today!
We love celebrating our clients’ new found mobility! Guess who got her wheelchair today!! We are so excited to finally have an easy and safe way to get Miss Bo around! Clearly she is happy about it too!
We’re thankful we can help keep you moving! “What’s Poppin’? Brand New Chair, Just Hopped In — Thank You NSM”
A huge shoutout to Ed at National Seating & Mobility for helping make sure our girl’s chair had all the features she needs and making this process so smooth and easy! Also, to Rhyan’s therapists who are some of her biggest advocates! We are so thankful for all of you"
Connect WITH US @NSMOBILITY
@MOBILITYNSM
FAC E B O O K .CO M/N S M O B I LIT Y
36 | Let’s Get Moving
Our clients inspire us every day! Meet Alexander! A determined 7-and-a-half-year-old boy with cerebral palsy who enjoys riding his bike, reading, and making art.
Genuine Gel™ Batteries Make a Difference for Complex Rehabilitation Users Complex Rehab Customers that depend on batteries to power their mobility equipment have become accustomed to a certain level of quality, cycle life, reliability and performance that only Genuine Gel batteries can provide.
WHAT IS A GENUINE GEL™ BATTERY? A Genuine Gel battery is a Valve Regulated Lead-Acid (VRLA) battery, regulated by special, one-way pressure-relief valves. The electrolyte in a Genuine Gel battery is immobilized in a highly viscous gelled state. Genuine Gel battery designs have a superior deep discharge resiliency and can deliver over two to three times the cycle life of other battery types sometimes used in Complex Rehab Technology (CRT). MK_Move_v1.qxp_Layout 1 4/1/21 3:38 PM Page 1 MK_Move_v1.qxp_Layout 1 4/1/21 3:38 PM Page 1
WHAT IS A “HYBRID” GEL BATTERY? There is no standardization or qualification for what are being called “Hybrid” Gel (or “AGM Gel”) batteries. These are marketing terms for battery products that are not Genuine Gel batteries. They have been labeled as either “Hybrid” Gel, “AGM Gel” or, in some cases, mislabeled completely as “Gel batteries” to associate with terminology that has been accepted as the standard in the industry. According to all international standards, the electrolyte must be immobilized by a gelling agent. None of these “Hybrid” batteries are genuine Gel Batteries. They will NOT provide the life, performance, reliability and confidence that complex rehabilitation users have come to expect from the most trusted brands of Genuine Gel batteries. Complex rehabilitation users should always verify with their provider that the batteries used in their equipment are genuine Gel batteries.
we wou ld like to than k mk bat tery for sponsoring this article .
The Hearts of NSM Champions the arts & culture issue wouldn ’t be complete without a nod to a few national seating & mobility employees who love to explore creativity in all its forms. from artists and poets to singers and photographers, meet five nsm employees who put the “art” in “ heart.”
CARE Y BRIT TON B R A N C H M A N AG ER (ATP/S M S , C RTS) F T. L AU D ER DA LE , FLO R I DA
When Carey Britton’s daughter was born, he discovered a new hobby: photography. After taking classes and participating in a few camera clubs, he began to develop a love for nature photography. Britton, who loves his work because it involves listening to clients and finding solutions that make a difference, says photography allows him to unwind. He and his family often combine vacations with photography, visiting national parks and other locations where he can capture photos of birds, animals and landscapes. Britton’s work has been featured in local museums and nature centers. You can check it out at Facebook.com/CareyJohnPhotography.
A musician (guitar and bass), developer and photographer, Cater finds meaning and purpose in the arts. He recently published a children’s book, Looking For Friends In My Backyard, and illustrated it with watercolors. He’s also a cartoonist/caricature artist. “I have always doodled on notebooks, planner pages and meeting notes,” Cater says. He estimates he’s done hundreds of caricatures over the past few years. “Most of my fellow employees usually end up with at least one on their desk!” he says. “It's a fun way to get acquainted.” Cater drew the cartoon of Bill Mixon that accompanies his letter in this issue of Let’s Get Moving.
38 | Let’s Get Moving
WAYNE CATER . N E T D E V ELO P ER N A S H VI LLE , TEN N E S S EE
La-Tesia Poole enjoys the culture L A-TESIA POOLE of NSM. “We get to help people,” R EI M B U RS EM ENT S P EC IA LI S T she said. Outside of her work, C H AT TA N O O GA , TEN N E S S EE Poole is a poet and visual artist. Drawing has always been a part of her life, but during a difficult season, Poole turned to the arts as an outlet for her emotions. “I am most proud of my self-published poetry book, my first solo art show where I sold half of my artwork, and my art apparel—you can actually wear my work as well!” Check out Johnson’s work by following her on Instagram (@artbylatesia_danielle).
REX JOHNSON TEC H N I C IA N (ATP, C RTS) M EM P H I S , TEN N E S S EE
JASMINE RENEE SMITH M ED I C A R E B I LLI N G S P EC IA LI S T C H AT TA N O O GA , TEN N E S S EE
Rex Johnson loves being an NSM technician because he can see the tangible difference his work makes in peoples’ lives. While his work allows him to find creative solutions for clients, he pursues creativity in a number of ways outside of work. Johnson currently fronts two bands, owns a restaurant and is an active member of his community’s garden club and association. “I’ve been a musician all my life,” says Johnson, who got his start in his high school band. “I started out in the Memphis music scene as a drummer and then I became a lead vocalist and guitarist as well.”
Jasmin Renee Smith deeply understands the value of NSM’s mission. “My mother has been disabled my entire life,” Smith says. “I love that I am a part of a company whose mission focuses on mobility and independence for those who have disabilities.” A visual artist, Smith paints custom artwork on clothing, shoes and accessories. She is especially proud of a pair of shoes she designed for Black History Month 2021. “I painted an African Kente cloth pattern on a pair of Chuck Taylors and decided to share a few pictures on social media. I received so much positive feedback on them and I even received a few orders!” Let’s Get Moving | 39
Embracing the Challenge by humberto chirino , as told to mandy crow
For more than 25 years I helped people and served my community as a law enforcement officer in Pembroke Pines, Florida. My wife, Tania, and I have been married for 21 years, and we are the parents of eight wonderful children. In 2018, we sold the successful food and spice business we had spent years building up with plans to retire and travel the world. But our plans changed in July 2018, just as we were about to embark on a one-year European adventure. While being treated for what the doctors presumed was a stroke, I had an allergic reaction to a medicine that created blood clots in my body. I ended up in a coma for 30 days, had seven surgeries—including a double amputation of my legs—and was pronounced dead three times. It has taken me three years to understand what happened to me. Before, my life centered around interacting with others, but after my amputations, I didn’t want to see anybody for a long time. I had to overcome that. I had to try to understand what had happened to me and accept it, and it hasn’t been easy. But I’ve accepted the challenge.
40 | Let’s Get Moving
This summer, we finally set off on our European adventure. We explored Italy—Rome, Milan, Bologna and Florence, as well as Switzerland and Greece. This journey has definitely made me a stronger person—and not just me, but my wife as well. It’s amazing how we are learning to meet the challenges [we face] together. Traveling was difficult, but in a good way. The challenges have made us realize that we take life for granted. The little steps we take—before, now and forever—are going to seem like giant leaps. So, my advice? Enjoy your life to the fullest. Seek to appreciate each moment because it’s not going to come back to you again. Travel. Explore. Learn. Yes, your life may be challenging—but embrace each challenge and figure out how to overcome each of them along the way. Be creative. If your life is marked by a before and an after like mine, your solution may not look like it would have in the past. But it’s your unique solution and your unique life. Don’t be afraid to live it.
Bert Chirino and his wife, Tania, spent the summer and fall fulfilling their dream of traveling in Europe. Bert hopes his adventures and travel tips will inspire more people who use mobility devices to explore locally, domestically and internationally. Follow Bert at instagram.com/ bertsjourney and on his YouTube channel, Bert The Phoenix.
Photo by Chris Barbalis / Unsplash
The new normal. We’ve all heard that phrase over and over again during the pandemic, but for me, my new normal began in 2018.
CALL YOUR LOCAL BRANCH TODAY! nsm-seating.com/find-a-branch
EXPERT HELP ON THE GO. With remote service, NSM can evaluate your equipment on the go, at home or across the country. All you need to do is contact us and we'll guide you through the rest.
We're more than a mobility company.
WE’RE A MOBILITY PARTNER. At National Seating & Mobility, we honor our clients' journeys of independence, and help them get where they deserve to go; at home, in their community, and throughout their lives. We don’t just customize chairs, repair equipment, or install accessibility solutions. We build relationships that last a lifetime.
Real mobility doesn’t end with a chair. We employ thousands of passionate service professionals to provide people with accessibility solutions wherever they need them — in their homes and beyond.
Le
ng
et Mov i 't s G
Want to learn more?
Want to join our team?
nsm-seating .com
nsm-seating .com/careers