Black Lives Matter: Voices from Our Community

UNITED SPINAL ASSOCIATION’S

life beyond wheels

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Prefer not to convert to digital but still want to give back? Any amount helps! Visit www.unitedspinal.org/donations CONTENTSIssue 323 - August 2020

life beyond wheels

COVER STORY BLACK LIVES MATTER Behind every sign and slogan are the stories that give a movement meaning. We weren’t sure what stories Black wheelchair users would tell about the intersection of race and disability — so we asked. Thirteen people answered the call, sharing both unique perspectives and common themes of wheeling while Black. 20

Cover Photo by Erin Taylor Contents Photo Courtesy of the Milwaukee Journal Sentinel

FEATURES DEPARTMENTS

4 BULLY PULPIT 16 SEE THE WORLD, 5 BEHIND THE STORIES STAY CLOSE TO HOME 6 SHARE If you’re not sure that now is the best time for international travel, LILLY LONGSHORE shares some creative ways you can 8 POSTS enjoy the perks of foreign travel without leaving the U.S. 10 UNITED NEWS 12 HOW WE ROLL 36 WELCOME TO THE GROUP 14 PRODUCTS A long-running SCI support group at Craig Hospital continues to thrive because of its ability to serve the various needs of 39 IN THE MEDIA its ever-changing roster of attendees. RICHARD HOLICKY 40 DAILY DILEMMAS talks with his fellow group members to better understand the 43 CLASSIFIEDS group’s success. 44 LAST WORD life beyond wheels

BULLYBy Ian PULPITRuder

NEW MOBILITY IS THE MONTHLY MAGAZINE OF UNITED SPINAL ASSOCIATION BLACK LIVES MATTER PRESIDENT & CEO: JAMES WEISMAN VP OF PUBLICATIONS: JEAN DOBBS It’s impossible to know how future genera- when it comes to diversity of disability, tions will look back on 2020 and remember but in terms of diversity of cultural expe- it. If I had to single out one issue that has con- rience, we are lacking. We know this, and EDITORIAL sumed the most of my thoughts, it would be we are working on it. PUBLISHER: JEAN DOBBS the murder of George Floyd, the subsequent We have made strides in terms of EXECUTIVE EDITOR: JOSIE BYZEK calls for police reform and the strengthening including people of color in our content in EDITOR: IAN RUDER of the Black Lives Matter movement. the last two years, but we haven’t been as ASSOCIATE EDITOR: SETH MCBRIDE As Alex Jackson writes in this issue, on successful in terms of recruiting and em- EDITOR EMERITUS: TIM GILMER May 25, when officer Derek Chauvin held ploying writers of color. This issue shows SENIOR CORRESPONDENT: BOB VOGEL his knee on Floyd’s neck for eight minutes we can do better, and it highlights the value and 46 seconds, everything changed. As CORRESPONDENT: AARON BROVERMAN of including authentic voices from across difficult as it had been to adjust to the stay- the spectrum of diversity. in-place protocols of COVID-19 and the CUSTOMER SERVICE new post-virus world, responding to and Toll-free 800/404-2898, ext. 7203 dealing with the coronavirus was simple by comparison. Wash your hands, wear a “We have made strides in mask, avoid large groups. In essence, be ADVERTISING SALES smart. Not fun, far from ideal, but clear. terms of including people 718/803-3782 When it comes to reforming the police of color in our content, MANAGER, CORPORATE RELATIONS: and addressing the deeply-rooted systems MEGAN LEE, EXT. 7253 that perpetuate inequality in America, but we haven’t been as AD MATERIALS: DEANNA FIKE, EXT. 7250 Floyd’s death and the ensuing events have successful in terms of reinforced that the need for radical change recruiting writers of color. PRODUCTION is equally clear. What isn’t as clear, and PRODUCTION MANAGER: DEANNA FIKE what keeps me awake at night thinking, is This issue shows we can do how we bring about that change. better, and it highlights the CIRCULATION I wish we could end systemic racism CIRCULATION MANAGER: with something as simple as wearing a value of including authentic BEVERLY SMITH mask, but if these last three months have voices from across the shown us anything, it’s that A) nothing is as spectrum of diversity.” POSTMASTER: Send address changes to New simple as it seems, and B) the divides in our Mobility, 120-34 Queens Blvd, #320, Kew Gardens nation will not be easily healed. NY 11415. Subscription rates: $27.95/year; $35.95/ year in Canada; $67.95/year international via So, when it comes to bringing about that New Mobility isn’t going to end racism, airmail. New Mobility (ISSN 1086-4741), Volume change, what is the role of New Mobility? or ableism for that matter, but we have a 31, Issue 323, is published monthly by United What can New Mobility do to be part of the Spinal Association, 120-34 Queens Blvd, #320, part to play, and we are committed. It’s Kew Gardens NY 11415. Copyright 2020, all rights solution? reserved. Reproduction without permission of any These aren’t new questions, but in not going to be easy, and we’re going to material contained herein is strictly prohibited. We need all of your help to guide us, critique welcome comments; we reserve the right to edit light of current events and ongoing con- submissions. versations around racism, disability and us and enlighten us, but it is critical that Periodicals postage paid at Flushing, NY intersectionality, we want you to know we make our voices heard in this fight so and additional mailing offices. they are guiding our editorial process and that when people do read about 2020 future planning. in the future, they can say that George There is no getting around the fact Floyd’s death and the movement that it www.newmobility.com that our editorial staff consists of four galvanized led to something that made www.unitedspinal.org white people. Maybe we pass the bar the world a better place.

4 NEW MOBILITY life beyond wheels

BEHIND THEWith Ian Ruder STORIES COLUMNISTS MAT BARTON • JOSH BASILE SHERI DENKENSOHN • MIKE ERVIN MIKE FRANZ • BROOK MCCALL TEAL SHERER • TODD STABELFELDT REVECA TORRES • KATE WILLETTE life beyond wheels KARY WRIGHT At some point in the weeks after George Floyd’s death, our editorial team started discussing the possibility of a cover package focused on the impact on Black wheelchair users. The striking photo on the cover of this issue, which came across one of my social media feeds, was one of many images and stories we saw that quickly convinced us to scrap what we had planned for CONTRIBUTORS this issue and commit to the BLM package. The image shows first-time protestor Evita Rush at a KIM ANDERSON • CHRISTIAAN BAILEY Portland, Oregon, protest in early June, and was captured by photographer Erin Taylor, a friend LAWRENCE CARTER-LONG of Rush’s. “We as black people have let so many injustices slide. I’ve lost count of how many times MICHAEL COLLINS • RORY COOPER I’ve read about some horrific killings of an innocent and/or unarmed black person,” says Rush. Ac- DEBORAH DAVIS • JENNIFER FRENCH cessibility concerns had kept her away from protests in the past, but this time felt different. The ALEX GHENIS • RICHARD HOLICKY experience was powerful, but left her aware of how much work needs to be done integrating people with disabilities GARY KARP • PAULA LARSON

UNITED SPINAL ASSOCIATION’S into broader movements for social justice. “This protest is REGAN LINTON • LILLY LONGSHORE for equality, but I was wondering if they’re really thinking of KATE MATELAN • BEN MATTLIN everyone.” Read Rush’s perspective on page 33. ASHLEY LYN OLSON • KENNY SALVINI ERIC STAMPFLI • MITCH TEPPER ANTHONY TUSLER • KIRK WILLIAMS CORY LEE WOODARD life beyond wheels LOREN WORTHINGTON

BLACK LIVES MATTER Black Lives Matter: WEB PARTNERS Voices from Our Community BACKBONES

The world came to a halt as we witnessed George Floyd struggling to breathe while CURB FREE WITH CORY LEE a police officer knelt on his neck for nearly nine minutes until he died. Now African Americans are voicing their opinions on issues that have been overlooked for centu ries, from the after-effects of slavery to police violence. AUG 2020 $4 The protests that are transpiring today are similar to how people with disabilities newmobility.com fought for the passage of the Americans with Disabilities Act of 1990. It took a rally - ing of people with and without disabilities who performed public demonstrations, like ROLLIN’ RNS crawling up the U.S. Capitol building steps, to prove the need for accessibility. After such relentless advocacy, lawmakers eventually realized more had to be accomplished to better - FACILITATED BY ALEX JACKSON accommodate people with disabilities. Similarly, my hope is that our country is finally realizing that police brutality is a sys temic problem for African-Americans. I interviewed Black people with SCI to get their perspective on Black Lives Matter and its 20 NEW MOBILITY ROOTED IN RIGHTS intersection with disability. — Alex Jackson -

Photo of Tucker Lundy by Bear Gutierrez SPINALPEDIA

AUGUST 2020 21 SPIN THE GLOBE Alex Jackson has written for and been featured in New Mobility several times, and I was PARTNERSHIP FOR INCLUSIVE thrilled when he agreed to helm the roundtable discussion at the center of this DISASTER STRATEGIES issue. Showing the resolve in the face of adversity I’d like to think characterizes New The Partnership works for equal Mobility, Jackson persevered through abbreviated deadlines and an unexpected, prolonged hos- access to emergency programs and pital stay to create what I think will stand as one of the magazine’s most timely pieces. Despite the services and full inclusion of the difficult circumstances, Jackson says the conversations proved enlightening and highly valuable whole community before, during personally. “Getting the chance to hear so many different perspectives really opened my eyes,” he and after disasters. says. “I learned a lot, and they reinforced why what’s happening in our country is so critical.” Disasterstrategies.org

Lastly, I’d like to thank the many members of the Black community who took the time to submit their words and thoughts for our Voices compendium, which starts on page 27. The volume and quality of responses we received inspired us to expand the amount of space we had allocated. As you will read, the stories we received are powerful and exactly the kind we need to be sharing and discussing as we as a community, and a nation, reconcile our attitudes and policies around race. UNITED SPINAL BOARD OF DIRECTORS: unitedspinal.org/our-story Please send queries, manuscripts or feedback to Ian Ruder: [email protected]

AUGUST 2020 5 UNITED SPINAL ASSOCIATION’S Paris by Firefly Designing an Exoskeletal Arm Swimming SHARE “The distance easily

traveled is amazing.” life beyond wheels Active Vent Life

An Uncertain Future Front-Drive Fun Having enough caregivers to do your I’m 50 and a 30-year para. I’ve often newmobility.com JUN 2020 $4 care and making sure that you are safe thought about traveling around Europe now with the coronavirus is a big problem but wondered about how it would be (“Spotlight on Vent Users,” June 2020). seeing the famous old stuff in a chair One thing I would recommend is if you (“Paris by Firefly,” June 2020). I recently cannot breathe on your own try to get purchased a front drive and was sur- a VOCSN vent. You stay on breathing prised at how well you can travel on one Make Masks Meaningful support for everything like cough assist when the small front casters are simply I would like to see some masks that and suctioning, and it helps a lot. taken out of the equation. The distance say something like “I’m doing my part” I agree with everything that [the people easily traveled is amazing. or “where’s yours?” or “mask=love” in the article] are saying, and I do not Tyler Tingle (“When It Comes to COVID-19, It’s Not Newmobility.com know how [people will] get out now. I You, It’s We,” Blog, May 14). I’m sure went to my medical appointment and someone could come up with some- they made sure no one was in the waiting Wudlick is Wudlikable thing more creative, you get the point. room when I went through, and every- Rob Wudlick has tirelessly advocated This is no small thing to ask people body there was wearing masks. This will for the betterment of those living with to do, but I guess way too much for not be like this forever, but I will always SCI. It’s no surprise to see that he’s also the president to do. He does not care be at high risk of getting any kind of respi- used his skills as an engineer to help about anyone else but himself. ratory infection. develop this product (“Helping Design a Kathi Pugh Larry Pagel Life-Changing Product,” June 2020). As Newmobility.com Newmobility.com his former caregiver, I know how impact- ful this will be for his independence. Think About Others More Vent Solutions Liisa Holm Even if people can go out and then We appreciated your June spotlight on Newmobility.com choose to care only about themselves ventilator users, in particular VOCSN am- and not about the safety of others, I’ll bassador Loa Greisbach. The benefits of About Time stay home. But I urge people to care integrated respiratory care are now avail- I can’t wait to see the final product about others. Wear a mask, keep social able to all ventilator users. Anyone who is (“Helping Design a Life-Changing distance and wash your hands well. You prescribed a ventilator plus one addi- Product,” June 2020). As an SCI OT, I express this so well. We live in commu- tional therapy (oxygen, cough, suction or have always been frustrated at the lack nities. Please. nebulizer) may be eligible for a VOCSN of research and development of upper Rose Pacatte Multi-Function ventilator. Under its new limb orthotics while I see so much time/ Newmobility.com Medicare billing code, HCPCS E0467 is effort/capital go into lower limb orthot- billable across Medicare, Medicaid and ics. “It’s just not fair,” I’ve heard so many private insurance. If any prospective user of my clients with C1-4 tetraplegia say. Confused & Confounded has questions about cost or insurance, “If only I had one hand to do something I could not agree with you more! I do not we encourage them to visit VentecLife. with, I’d be happy.” I am so hoping that understand why so many people are not com/contactkelly. Our team is happy to the Abilitec Assist with help meet that taking the basic precautions that will help answer their questions. goal. I will be holding good thoughts for protect their friends, neighbors, family Mark SooHoo you and the Abilitec Company! members, and society as a whole. VP, Marketing and Communications Theresa Gregorio-Torres Ann Woodley Ventec Life Solutions Newmobility.com Newmobility.com

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This is Not a Wheelchair It’s no wonder the off-road adaptive device “The Rig” is seemingly everywhere on social media lately — Zack Nelson, the guy who built it, runs “Jerry Rig Everything,” a YouTube channel with 5.82 million subscribers. His wife, Cambry, has paraplegia and uses a wheelchair, and a couple of years ago he built her a homemade off-road device out of two electric bikes that he fused together and put a seat between. The pair immediately began working on ways to improve the design, and a few iterations later they launched The Rig (youtu. be/vuMg0QwKAGI). “Our whole goal was to Best Places to Work design an affordable, capable off-road wheelchair and mass produce them,” says Nelson. The 2020 version of the Disability Equality Index The Rig runs mainly off bike parts, has a is out, revealing the companies with the best top speed of 12 mph and a range of 10-20 practices when it comes to workplace inclusion miles, though you can upgrade to a two- and accessibility. According to the report, “the battery system that can take you up to 35 miles. DEI continues to see an increase in year-over- With a full-suspension model going for $4,750, year participation, with the number of top-scor- The Rig is significantly less expensive than many ing companies more than quadrupling to 205 in other adaptive off-road vehicles. There are some tradeoffs 2020 as compared to 43 in 2015.” though. On the positive side, it does well enough in dirt, gravel and Companies were measured in a variety of grass that it would be able to handle whatever most riders need it to. categories that included culture and leader- Also, it has space and mounting racks to carry your wheelchair and ship, enterprise-wide access, community packs up small enough to fit in a short-bed pickup or even a Subaru engagement and employment practices such Outback. As far as drawbacks, it only has two-wheel drive, struggles as recruitment and retention. with traction in soft sand, and has a fairly high center of gravity. For Top-scoring corporations come from all full details, check out notawheelchair.com. industries — tech giants like Microsoft and Google, financial firms like U.S. Bank and Visa, retailers like Lowe’s and Walmart, and blue-chip manufacturers like General Motors and Johnson & Johnson. The DEI makes sure to note that a score of 100 doesn’t equal perfection. It “means that a company adheres to many of the numerous leading disability inclusion practices featured

in the DEI, but there’s still

room for improve-

ment.” To read the

full report, go

to: disabilityin.

org/what-

e we-do/ g

disability-

equality-

index/

8 NEW MOBILITY

Why Won’t You Date Me? — WATCH Sitting Pretty ‘Dating With Disability’ Rebekah Taussig — the force behind Nicole Byer, host of the popu- the popular Instagram account lar podcast Why Won’t You @sitting_pretty — is set to publish Date Me?, recently had come- her first book, Sitting Pretty: The View dian, wheelchair user and New from My Ordinary Resilient Disabled Mobility cover woman Santina Body. She says it “grew from my ten- Muha on the show. The hour- derest memories and most pressing long episode covers every- questions attached to living life from thing from problems with the this disabled body. It’s a memoir in ADA to the unique perils of essay form — each online dating with a disability chapter covering to including disability in broad- a different topic, er diversity discussions. The IF YOU HAVEN’T SEEN THE GOLDEN- from romance to conversation is fresh, funny GLOBE-WINNING HULU SERIES RAMY, work, ableism to feminism, repre- and doesn’t hold anything WHICH FEATURES WHEELCHAIR- back. Go to bit.ly/2ZABUSD sentation to acces- USING ACTOR STEVE WAY AS THE or search for it on your pod- sibility.” Release is FOUL-MOUTHED BEST FRIEND OF THE cast app of choice. on August 25 from SHOW’S CREATOR, DO YOURSELF A Harper Collins, and FAVOR AND START YOUR BINGE NOW. you can go to her Move SMOOV-ly THE SERIES’ SECOND SEASON WAS website for info on When it comes to attachable RELEASED EARLIER THIS SUMMER, AND how to preorder: power assist options for a manual WAY’S TURN IN EPISODE 7 — IN WHICH rebekahtaussig.com/portfolio/ wheelchair, the SmartDrive has a RAMY HAS TO HELP HIS FRIEND WITH sitting-pretty. smooth new competitor — correct SOME, UH, “PERSONAL ISSUES” — IS that, a SMOOV new competitor. ALREADY GETTING EMMY BUZZ. READ The SMOOV one was designed NM CONTRIBUTOR TEAL SHERER’S by Alber, a German subsidiary of My Wheelchair Guide REVIEW OF HOW RAMY IS HELPING TO Invacare, and has been available Searching for the right manual wheel- PUSH THE BOUNDARIES OF DISABILITY in Europe for the past year. As of chair and proper components is hard, but July, you can get it in the States. PORTRAYAL AT: HULU.TV/2WOBMLH a new mobile application from United The unit looks very similar to Spinal Association and the University the SmartDrive and has similar of Pittsburgh aims to change that. My specs, with a range of 12 miles, 6 mph max speed and a weight of 16 Wheelchair Guide includes tools and pounds. There are some key differences though. Whereas the SmartDrive resources to help consumers navigate is controlled by a Bluetooth connected bracelet, the SMOOV has a through the wheelchair selection, deliv- controller that mounts on your wheelchair. You tap it to start ery and maintenance process. “There’s and stop, and twist a dial to increase or decrease the a lot of information out there, but much speed, and the SMOOV’s motor is smart enough of it is geared towards clinicians,” says that if you grab your pushrims to stop, the Dan Ding, a researcher who helped unit will automatically shut down propulsion. develop the app as a one-stop Similarly, “If I’m doing six miles an hour going shop for quality information straight, and I enter into a turn, it will auto- in an easy-to-digest format. matically adjust my speed downward,” She hopes it helps users

says Bill Russel of Alber USA. better advocate for

With these advanced drive features their own needs when

and app-based customization, the working with a seating

SMOOV one is worth checking out if clinic or DME supplier.

you’re looking to add some power The app is available for

assist to your arsenal. It retails for

download from Google

s e $6,895. For more info and their g Play and Apple app a

online shop, visit smoov.com/

store by searching

us-en.

“MWG Manual.”

AUGUST 2020 9

The SMOOV one

MEMBER BENEFITS NEWS FROM UNITED SPINAL unitedspinal.org

United Spinal Association is dedi- CAPSTONE COOPERATION cated to enhancing the quality of United Spinal Association is hosting two graduate students from Mary Baldwin life of all people living with spinal University as they complete their capstone projects for the university’s doctoral program cord injuries and disorders (SCI/D) in occupational therapy. While United Spinal often works with occupational therapists in by providing programs and services a variety of roles, these capstone placements are a new approach. that maximize independence and The 14-week-long projects are a critical part of the educational process leading to enable people to be active in their students’ clinical doctorates, and ask them to create something that will contribute to communities. their fields of interest. Working hand-in-hand with a nonprofit allows students to gain a different perspective on their field, while also offering them an array of benefits and BENEFITS INCLUDE: connections that might not otherwise be available to them. “It has definitely impacted how I view everything,” says Brooke Cardwell, one of the Personalized Advice and Guidance two students paired with United Spinal. “I love working with a nonprofit, because obvi- Peer Support ously everyone’s heart is in the right place, and it’s very meaningful work.” Cardwell is developing an online employment resource group and a video library Advocacy and Public Policy for her capstone, and says having access to United Spinal staff and chapters has been Veterans Benefits Counseling invaluable. Sitting in on one chapter support group’s conversation about the value and role of OTs during their early weeks of rehabilitation proved particularly reaffirming. Accessibility Advocacy “That conversation really impacted me because it showed me that being an OT is impor- Local Chapters tant, meaningful, and really is helping people,” she says. Mary Burford, the other MBU student paired with United Spinal, is working with the New Mobility magazine organization’s Resource Center team to update its knowledge books and improve the Informative and Educational way it analyzes and provides resources to United Spinal’s peer-mentoring program. Publications “We’re really lucky to be here,” she says. “It’s nice to be with an organization that really cares.” Ongoing Educational Webinars Both Cardwell and Burford hope to continue their relationship with United Spinal after getting their degrees. Membership in United Spinal The partnership has been equally valuable for United Spinal, says Abby Ross, United Association is free and open to Spinal’s chief operating officer. all individuals who are living with “We’ve been thrilled to host Brooke and Mary for their capstone projects. We appre- SCI/D, their family members, ciate their insight and the valuable contributions their work will provide to our programs friends, and healthcare provid- and members. We hope the experience has given them an intimate view into the SCI/D ers. Visit unitedspinal.org or call world that stays with them throughout their careers.” 800/962-9629. Ross says United Spinal is currently speaking to several schools about future capstone placements and looks forward to expanding and improving these opportunities. United Spinal has over 70 years of experience educating and empow- ering 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.

Brooke Cardwell (left) and Mary Burford are working with United Spinal Association as part of their doctoral degree programs in occupational therapy. 10 NEW MOBILITY T h e S a f e , P r a c t i c a l a n d C o n ve n i e n t w a y t o t r a ve l wh e r e ve r a n d wh e n e ve r yo u w a n t .

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AUGUST 2020 11 caption HOW WE ROLL

NASA SCIENTIST Shannon Franks

As an earth scientist at NASA, Shannon Franks tackles some of our planet’s most difficult scientific questions. He brings that same approach to his personal life: confronting challenges head-on to find solutions.

Franks to the Fullest

Franks, 43, has always lived the most well-rounded life he which monitors Earth’s environmental changes. And if that’s can. But, the College Park, Maryland, resident’s idea of “well- not enough, he is a successful inventor with numerous adaptive rounded” might be a little different than most people’s. products under his belt, including Wheelchair Buddies — a After rehabbing his T2 SCI in 1996, he returned to school at mechanism for attaching your wheelchair to a handcycle so it Northland College in Northern Wisconsin, one mile from the can be brought to places like work or a friend’s house, or on a shores of Lake Superior, despite the region’s harsh weather and cycling trip. lackluster accessibility. But before doing that, he drove across He’s also a person who can look at a problem and innately America for a month — alone. realize how to solve it. For example, Franks and his wife built “That was tough, but it gave me the confidence I needed to a log cabin in the Appalachian Mountains that had a second know I could still be the person I was before my injury,” says floor Franks couldn’t get to. That is, until he applied some old Franks. “I’ve never been the type of person who takes the easy rappelling knowledge. way out.” He credits his confidence for his ability to achieve “I created a pulley system where I could get to the second great things. floor of my cabin using rock climbing equipment. My wife was The New Jersey native still competes in many of the same like, ‘I knew that was going to bother you, and I knew you’d sports he did before his injury. He is a competitive rower and figure it out’,” says Franks. “And I did.” wheelchair racer who also takes multi-day skiing, kayaking and When it comes to problem solving, Franks always zigs when handcycling trips. And when he’s not outdoors, he’s conducting everyone else zags. He knows of no other way to be. remote sensing studies for NASA’s Landsat satellite program, “I’m a scientist. My job is to solve problems. The stuff that

FAVORITE ADAPTIVE TECHNOLOGY: WHEELCHAIR OF CHOICE Something that lets me easily get on the AND WHY: beach. Beach chairs mean you can’t push I have a TiLite. I use it because yourself, and you must pre-arrange them. I can beat it to hell and it They’re kind of ridiculous. doesn’t break.

12 NEW MOBILITY STRANDED ON Robinson Crusoe Island

Though Shannon Franks is the type of guy who could escape Alcatraz with a spoon, sometimes that confidence and ingenuity gets him in trouble — like the time he was stranded on an island off the coast of Fiji.

Me being the person I am said, ‘You know what would be cool to do in Fiji? Maybe I’ll go to a small Island off the coast.’ I did this, and I have no idea why. It’s “called Robinson Crusoe island and ... it’s all sand!

I do, there’s generally no set rules on how to do it. That’s what research is — learning how to do things that are not established,” says Franks. “In my daily life, I always have to figure things out. The pulley system wasn’t my first idea. I had to try a few different ways to figure out the best way to do it, but I’m not a quitter.” You might call it bad planning — Franks calls it an adventure. The inspiration for Wheelchair Buddies is testament to that approach. Franks needed to figure out how to bring his I don’t know what I was thinking. I got — well, I don’t wheelchair on his handcycle, so he invented a mechanism want to say stuck — but I was on this island for two or “ three days. I couldn’t get around anywhere. I had to be that allowed him to do that. With that setup, he handcycled carried around by these Fijian men who kept giving me through the mountains of both Big Sur and New Zealand. He these alcoholic drinks, and I slept in a hut. quickly learned there was a demand for such a product. “I So, I get myself in these situations because I just live just thought I could teach people how to make it, and then I my life. It’s gotten me to a lot of places, and it’s gotten realized maybe not everybody is as mechanical as I am,” he me a lot of funny stories too. says. “I grew up in a blue-collar family with a father who was a mechanic, so doing things with my hands is not necessarily a challenge. I just did it.”

WHERE’S THE MOST ACCESSIBLE WHY I JOINED UNITED SPINAL: I belong to VACATION SPOT YOU’VE BEEN: many disability organizations, but most of them I would say New Zealand. Not only is it are athletic. Maybe United Spinal will get me in accessible infrastructure-wise, but it is touch with people who have other like interests. one of the most progressive countries, relating to thought.

AUGUST 2020 13 PRODUCTS By Michael Franz

THE APEX CARBON FROM MOTION COMPOSITES

The original plan for this column was to review two wheelchairs — the Motion Composites Apex Carbon and another that shall remain nameless. Understandably, both companies had significant problems with production and delivery of the wheelchairs due to the pandemic. Despite the challenges, Motion Composites was committed to delivering the Apex, and did so as quickly as possible. The other company was unable to deliver its wheelchair. Therefore, this review will be limited to the Motion Composites Apex Carbon with comparisons being made to my two-year-old ultralight wheelchair made by another leading manufacturer. Michael Franz tested the I am a big fan of my cur- Apex Carbon with his own rent chair, and it works well custom cushion and back, for me. So to get the most and power assist wheels. accurate comparison possible, we copied the dimensions ening when going over rough terrain. By itself, the standard of my chair when ordering the Apex Carbon. We also used size 16 x 16 frame weighs in at a svelte 9.8 pounds. The much of the same equipment including my Ride Designs Apex Carbon can be customized to meet the needs of most Java cushion, Invacare Matrx Elite back, and Alber E-Motion manual wheelchair users and is compatible with a variety of M-15 power assist wheels. The only significant differences third-party add-ons. between the two wheelchairs were the frame and the cast- In my opinion, the two most important things about a ers. The Apex Carbon has a carbon fiber frame with 4-inch manual wheelchair are how quickly I can get around and Frog Legs suspension forks and casters while my current how smooth the ride is. To test the speed, I took the Apex chair has a titanium frame with 4-inch LiteSpeed casters with Carbon for my usual roll through my neighborhood. I am a stock suspension forks. C5-6 quad with no triceps or hand function to help push. By After spending two weeks with the Apex Carbon, I can no means am I a fast pusher, but I can keep up with most confidently recommend it to anyone looking for a new walkers, and my dogs do not seem to mind the pace. The manual wheelchair. The Apex Carbon is a rigid-frame wheel- route through my neighborhood is about 1.2 miles, downhill chair made of T700 high-tensile strength carbon fiber. The on the way out and uphill on the way back. In my chair, I was carbon fiber is strong, lightweight and provides shock damp- able to do the trip in about 33 minutes. Two days later in the

14 NEW MOBILITY Apex Carbon, I did the same trip in just less The Apex Carbon without than 30 minutes. The weather conditions power assist wheels. were the same on both days, and I doubt that my strength improved by 10% over the course of 48 hours, so I think it is safe to attribute the faster time to the better performance of the Apex Carbon. Even more notable than the increase in speed was the smoothness of the ride. The streets in my neighborhood are smooth and easy to roll on, but in my chair, I feel every little bump. In the Apex Carbon, the bumps are much less noticeable, and it feels like the chair is just gliding along. In my driveway, where there are much larger cracks and bumps, I could still feel the difference. Big bumps felt like small bumps, and they were much less jarring than usual. Typically, when I hit a larger bump or crack, I can feel the impact through my spine. In the Apex Carbon, I could still feel the impact, but it was much reduced. The brick pavers in my backyard that frequently trigger spasms did not do so in the Apex Carbon. Oftentimes, the biggest obstacle when ordering a new wheelchair is getting insurance to cover it, and that is especially true of the Apex Carbon, which retails for $4,295. Medicare will not pay for the upgrade to carbon fiber. When dealing with Medicare, there is the option to do an unassigned claim. In this scenario, the dealer submits to Medicare to determine the likely coverage amount and the consumer pays the entire cost of the wheelchair upfront. Once Medicare approves the order, the consumer will receive a check reimbursing the cost of the wheelchair minus anything that is not covered. Many private insurance companies will pay for the upgrade to carbon fiber if it is deemed to be medically necessary. It can be a frustrating process, but by working with the dealer, doctor, therapists, and insurance company, it is possible to get coverage. Some insurance companies will allow the consumer to pay the difference for the upgrade to carbon fiber. Of course, there Assistance Dogs Provide is always the option to pay the entire cost out-of-pocket. There are companies like CareCredit that offer credit to pay for medi- Access to the World cal equipment over a period of time. Any time credit is involved, it is important to check the terms to ensure that the interest rates are fair. International Assistance Dog Week The Apex Carbon is a great option for anybody looking for an August 2—8, 2020 ultralightweight wheelchair that offers great performance and a nice ride. The Apex Carbon can be adjusted to fit the needs Organize or take part in an of most wheelchair users, and many customization options are International Assistance Dog Week event. For more available. The most significant prohibiting factor is the cost and info and materials visit: getting insurance to cover it. If funding and insurance coverage are an issue, the Apex Carbon may not be an appropriate option. www.assistancedogweek.org However, if insurance is willing to cover the cost, the Apex Carbon is worth looking for your next wheelchair.

AUGUST 2020 15 TravelingTraveling AbroadAbroad at home BY LILLY LONGSHORE

fter being shut in at home for pelgangers, road trippers can save a lot months during the COVID-19 of money, time and energy by visiting Apandemic, I found myself America’s European-ish counterparts, dreaming of taking tantalizing vacations and in a more self-contained manner. to distant destinations. I want to get back One can get a taste of old-world charm to enjoying recreational travel, but as a without ever leaving the country. Plus, wheelchair user with a medically at-risk the American versions are often more family, it’s imperative to stay safe and wheelchair-friendly. These road trips healthy. Traveling internationally is too are not the same as traveling abroad, much of a gamble, but domestic road trips but they’re a lot better than nothing, and allow me to control my circumstances. right now that sounds divine. As I pondered where to go, I realized that there is a way to simulate some of the joys Amish Authenticity and experiences of traveling abroad with- Ohio Amish Country is a great place to out leaving the lower 48. start if you’re looking for a taste of Ger- During my travels to all 50 of the man-Swiss architecture and culture. U.S. states and Puerto Rico, plus 24 dif- The Amish originated in what is pres- ferent countries, I have noticed simi- ent-day Switzerland and they brought larities between domestic and Euro- aspects of their language and culture pean destinations. For example, when with them to the New World. Many I was in Bavaria, Germany, going from German-speaking Amish settled in Rothenburg ob der Tauber to Munich, Holmes County, which is now home to I kept thinking, wow, this looks just one of the world’s largest Amish com- like southern Ohio. And it really did — munities. They also live in neighboring green rolling hills covered with species Wayne and Tuscarawas Counties. of deciduous trees like oaks, maples, The region’s topography and flora chestnuts and birch stretched as far remind me of my visits to Germany as I could see, just like in Ohio. After and Switzerland. German is commonly thinking about it for a while, I realized spoken in the stores, restaurants and I shouldn’t be surprised. Both areas are streets, and the Swiss architectural in- along similar latitudes, have similar fluence is obvious in shops like Heini’s weather, similar seasons and are in the Cheese Chalet, and Sugarcreek’s Broad “Pullquote pullquote pullquote pullquote foothills of large mountain ranges — Run Cheesehouse and Swiss Heritage The world-class Kentucky Horse Park is a must- the Appalachians in Ohio and the Alps Winery. Sugarcreek has been dubbed visit and only two hours from Mammoth Cave. in Bavaria. “the Little Switzerland of Ohio” and is pullquote pullquote pullquote pullquote Door in Wilmot. These are all nicely ac- In addition to Bavaria and south- famous for its huge Ohio Swiss Festival pullquote pullquote” ern Ohio, other prominent parallels each fall that draws thousands of visi- cessible with level entrances and wide between America and Europe are the tors. Catering to tourists, the area res- aisles. Among the many shops that Postojna Cave of Slovenia and Mam- taurants have excellent and abundant provide easy wheeling and great fun moth Cave National Park in Kentucky, home-style food. are Carlisle Gifts in Walnut Creek, Sol’s the tulip fields of the Netherlands and My favorite wheelchair-friendly Craft Mall in Berlin and Lehman’s Gen- Skagit Valley in Washington, and the Amish restaurants are the Farmstead eral Store in Kidron. Like some other Dingle Peninsula in Ireland and the Restaurant in Berlin, Ohio, Der Dutch- nearby small towns, Berlin has upgrad- Oregon coast. With these almost-dop- man in Walnut Creek and the Amish- ed its streetscape’s accessibility. The new,

16 NEW MOBILITY Karst Caves and On a 2.2-mile electric train journey, Horses I saw a very old portion of the Postojna Like the friendly fight over cuckoo cave system. The age means incredible clocks, another cross-Atlantic rivalry calcite structures are everywhere. They gave me another deja vu moment when I sparkle like glitter under the artfully visited Mammoth Cave in Kentucky the placed lights distributed throughout same year that I visited the Postojna Cave the train route. There is no way of sit- in Slovenia. Among the two destinations’ ting in any wheelchair while on the many similarities, they both claim to train, so I transferred into my seat at have the largest cave system in the world. the beginning of my trip, and the tour staff met me at the ride’s end with my manual wheelchair. At Mammoth Cave, the newer part of the cave system is wheelchair-friendly via an elevator that takes visitors 300 feet below ground. I used my power- chair on this trip. We left the elevator and entered the Snowball Room, which is named that because of the white gypsum deposits all over the ceiling. Picnic tables, a cafeteria line and a kitchen are still in this room from the days when one could have lunch in the bowels of the earth. A wide, easy-to-wheel, dim- ly-lit half-mile-long path leads visitors from the Snowball Room into the cave. The gypsum deposits are the distin-

Courtesy of National Park Service guishing feature here, as this portion of Mammoth Cave is too new for glitter- ing calcite formations. wide sidewalks and curb cuts have Both Postojna and Mammoth cave made access even better. It’s still hilly, Over millions of years, both cave systems are home to bats and other but that’s part of the beauty of southern systems were carved from limestone unique critters that live in the dark, wet Ohio — and Bavaria. by water, primarily the Green River in clime. Postojna is known for an olm, a Elements of German-Swiss culture Kentucky and the Pivka River in Slove- white unpigmented amphibian, that endure in the quality clock shops and nia. This type of geologic activity where lives in the cave. Mammoth Cave has cheese markets found throughout Ohio water dissolves and carves limestone eyeless albino fish, crayfish and crickets Amish Country. Sugarcreek shares a is known as karst geology. Karst is dis- among its fauna. claim to the world’s largest cuckoo clock tinguished by sink holes, swallow holes, Since Mammoth Cave is a national with the town of Schonach im Schwarz- underground caverns and solutional park, it also has wheelchair accessible wald in Germany. At almost 24 feet tall, caves. This entire area of geologic study trails above ground, like the half-mile Sugarcreek’s clock stands at the city’s is named “karst” after the Karst Plateau Heritage Trail. This level trail begins just entrance in a small, wheelchair-friendly in Slovenia where these unique features outside of Mammoth Cave Hotel and is park. On the hour, a band emerges from are extremely prominent. As limestone either packed dirt or boardwalk. Mean- within the clock and plays a happy tune caves age, beautiful calcite formations dering through a wooded area, it pro- while two dancers dressed in traditional can form, such as stalactites, stalagmites, vides a view of the historic cave entrance style spin around. It is a must-see, along curtains and columns. These formations and overlooks an old cemetery. with the town’s famous cheese stores. are often coated with sparkling crystals. A two-hour drive from Mammoth

AUGUST 2020 17 Cave takes you to the fabulous, world- over in time for the annual Skagit Valley director of the Skagit Valley Tulip Festi- class Kentucky Horse Park in Lexington, Tulip Festival. As we drove through the val, pointed out a number of events and where many beautiful Derby and Breed- tulip fields, we passed wave after wave of venues that are wheelchair accessible, ers’ Cup race-winning thoroughbreds vibrant hues, all offset against the ma- including Art in a Pickle Barn, Art Bash, are retired. It is absolutely worth the jestic North Cascade Mountains in the Art in the Schoolhouse and Garage Sale drive. The paths are wide, smooth, most- distance — a background that rivals the and Antiques and More at the Fair- ly level and either paved or packed dirt. Netherlands’ rows of windmills. grounds. “But I would be careful about The barns — if they can be classified as going into the agricultural fields with that — are spotless, spacious and very mobility aids,” she cautioned. I heeded wheelchair-friendly. What a delight it is her advice and stayed out of the mud, to watch and pet these elite creatures! but I was awed by what I did see from Slovenia has its marvelous horses, gardens and roads edging the many too. Only 23 miles from Postojna is Lip- “I was struck by how much blooming fields. ica, Slovenia, where their magnificent Although the Netherlands’ tulip Lipizzaner horse farm has bred horses the Irish scene reminded me growers may not Photo by Meredith Matherly/Bureau of Land Management Oregon and Washington for over 400 years. The wide, paved of the central Oregon coast.” focus on main path lined with chestnut trees is wheelchair easy to wheel. The outdoor show arena accessibility, is up a slight hill along a packed dirt Keukenhof road, but it is so worth it to see these Park and gorgeous horses prancing and dancing Gardens are in competitive shows. I have been to the Netherlands, wheelchair- Why caves and horses ended up to- but not to their tulip fields. So I called friendly. Flat, gether like this, I don’t know. But both Jeannette DeGoede, who until last year wide paths, Slovenia and Kentucky share these sim- co-owned Tulip Town in Mount Ver- wheelchair- ilarities that are thrilling to see. non with her husband, Tom, a native friendly of the Netherlands. As a tulip grower, restrooms, a Fields of Color she has been to the Dutch tulip fields restaurant and After wandering through the packed dozens of times and has participated in exhibition hall gravel paths and firm grassy areas of the the Skagit Valley Tulip Festival since it all make this at- Roozengarde Display Garden in Mount began in 1984. She confirmed that the traction available Vernon, Washington, my sister and I two regions’ similar climates make for to wheelchair us- found ourselves looking out over never- world class tulips, while also noting ers. Because the ending tulip fields. “This looks just like some differences. Netherlands is a bit farther north, the Netherlands,” she said. “Except there “The focus in the Netherlands is Photo courtesy of Tulip Town are no windmills.” Really, there is at least more on growing and not tourism,” De- its tulips bloom one big windmill — it was right behind Goede points out. “In Skagit Valley, we throughout most me in the middle of the garden. But not try to do all we can to promote inclu- of May. rows of them. Beyond that, though, there sive tourism. We have some truly great are definite similarities. events during the Tulip Festival, too.” Sea Cliffs and Tulips flourish in maritime climates Tulip Town has a wheelchair-friendly Marine Critters that are cool — but not too cool — with indoor area full of flowers, a waterwheel The view from my tour bus atop the pleasant, breezy summers and no freez- and huge wall murals. rocky cliffs of Ireland’s Dingle Penin- ing winters. They like soil with good I attended the Kiwanis Salmon BBQ sula was gorgeous. As I leaned toward drainage. Two places on earth that at Hillcrest Lodge in Mount Vernon and the seaside window to catch a glimpse nicely fit these criteria are the Nether- stopped by multiple shops. The popular of Fungie, the local bottlenose dolphin lands and Skagit Valley, Washington. Downtown Mount Vernon Street Fair, that inhabits Dingle Bay, I looked at Every April, Skagit Valley becomes normally held each April, is nicely ac- the sudden, rocky drop-off at the edge an array of colors when the tulips take cessible, too. Cindy Verge, executive of the road. I was struck by how much

18 NEW MOBILITY clatter against each other. I could spot harbor seals farther out on the nearby rocks. A woman next to me saw an el- ephant seal, but I wasn’t so lucky. Be- hind me, the Yaquina lighthouse stood on a tall bluff, and behind it rose wheelchair accessible whale watching plat- forms, from which I could see a myriad of sea birds like cormorants, murres and gulls — similar to the species that live in Dingle. On the other side of Yaquina Head, one of the only wheelchair accessible intertidal zones in the world allows access all the way to the edge of the sea. There’s Photo by Meredith Matherly/Bureau of Land Management Oregon and Washington a great visitors center in the park, too. I met a man in its parking lot who was looking through a long, fancy telescope at a cliff. “I’m watching a peregrine falcon,” he told me. Then he lowered the scope to my level, and I saw it, too. The falcon, perched on a cliff, seemed to be love to hang around and looking right back at me. — voila — another twin. Another Newport must-see is the The species vary a Hatfield Marine Science Center. It is bit — grey and com- part of Oregon State University’s ma- mon seals in Dingle rine research program and is admis- and northern fur and sion-free. It is nicely accessible and Pacific harbor seals in provides family fun and educational Newport — but the opportunities, including a wave ma- similarity is clearly chine, an octopus display and a marine there. On the inland “touching tank.” side, Dingle offers Newport Historic Bayfront offers beautiful, unusual many wheelchair-friendly shops like green hedgerows ex- Newport Candle Company and Wax Photo courtesy of Tulip Town The tulip fields in Skagit Valley, Washington, tending across emerald, rolling fields. Works gift shop. Restaurants include rival those in the Netherlands. Hedgerows developed as natural fences Mo’s Original restaurant and Rogue and are unique here. Newport coun- Ales’ Public House, and there are also the scene reminded me of Newport, ters with lighthouses, a cobble beach, wheelchair-friendly boat excursions Oregon, and the central Oregon coast. a wheelchair accessible intertidal zone around the bay with Marine Discovery and a wonderful historic bay front with Although Dingle is on the Atlantic Tours. barking, entertaining sea lions. Ocean and Oregon is on the Pacific, the When it comes to seeing some mar- Of my favorite wheelchair-friendly velous sights, incredible nature and average high and low seawater temper- places in Newport, I love Yaquina Head unique cultures, I really don’t have to atures are within a few degrees Fahr- Outstanding Natural Area, which is go that far. I don’t even have to leave my enheit of each other. This lends itself to owned by the Bureau of Land Man- own country — or my own state — for supporting the same types of sea crea- agement. Within this one park, there fabulous adventures. I can take my own tures, like seals, dolphins, whales and is much to see and do from my wheel- vehicle on a road trip, control my cir- seabirds. Add that to the rocky islands chair. I sat above a cobble beach where cumstances and go as near or as far as and crags that sea mammals and birds wave action caused rounded cobbles to I want.

AUGUST 2020 19 BLACK LIVES MATTER

FACILITATED BY ALEX JACKSON

20 NEW MOBILITY The world came to a halt as we witnessed George Floyd struggling to breathe while a police officer knelt on his neck for nearly nine minutes until he died. Now African Americans are voicing their opinions on issues that have been overlooked for centu- ries, from the after-effects of slavery to police violence. The protests that are transpiring today are similar to how people with disabilities fought for the passage of the Americans with Disabilities Act of 1990. It took a rally- ing of people with and without disabilities who performed public demonstrations, like crawling up the U.S. Capitol building steps, to prove the need for accessibility. After such relentless advocacy, lawmakers eventually realized more had to be accomplished to better accommodate people with disabilities. Similarly, my hope is that our country is finally realizing that police brutality is a systemic problem for African-Americans. Photo of Stewart Tucker Lundy by Bear Gutierrez I interviewed Black people with SCI to get their perspective on Black Lives Matter and its intersection with disability. — Alex Jackson

AUGUST 2020 21 BLACK LIVES MATTER with people not working and being able to do things, recreational things, they have to stop and actually look and not ROUNDTABLE PARTICIPANTS be distracted. What happened to Floyd was so horrible that it made people fi- ALEX JACKSON, PUBLIC RELATIONS PROFESSIONAL: For this ar- nally want to listen because they didn’t ticle, we're asking African Americans with spinal cord injuries to share really have a choice this time. their perspectives on Black Lives Matter, police brutality and how we MINNICK: It’s terrifying. Change is go- can bring together all of our communities into one better society. ing to come, but for a police officer to Now to let you know a little bit about myself, I was injured at about 9 feel that it’s OK to put his knee on some- months old in a motor vehicle car accident and I have a C5-6 spinal cord one’s neck when they’re telling him that injury. Even with the injury, I'm able to use my right arm and hand to pretty they cannot breathe and when they’re much do everything. Can you tell me a little bit about your injury? calling for their mother … for someone to feel that this is OK is hurtful. It an- NAMEL NORRIS, RAPPER AND EDUCATOR: I'm a T2 para from a gers me. And to have other officers gunshot wound. When I was 17, my cousin was playing with a gun and there and witnessing this and no one that left me paralyzed from my chest down pretty much. I’ve been helping? Now I understand that one paralyzed for more than 20 years, and I’m from New York, New York. officer tried to step in and say, “Hey, take your knee off of his neck, he can’t STEWART TUCKER LUNDY, MEDIA PRODUCER AND CONSULTANT: breathe,” but you have to do more than I got hurt in a diving accident in — this will make you feel like a baby that. Right is right, and wrong is wrong. — in 1982, when I was 14 years old. And it’s C4-5 incomplete quad- LUNDY: I read a quote from Will Smith, riplegia. I live in Denver. “Racism’s not getting worse; it’s getting filmed.” And I just see the arrogance SHANNON MINNICK, INDEPENDENT LIVING SERVICES DIRECTOR: when people say there is not any racism I was in a car accident. I was with two friends and one of my friends in the police force. Well, we’ve been fell asleep. We swerved and hit a tree, and I was in the back seat of the talking about this for a long time. car with no seat belt on. I'm a quadriplegic, C6-7, for 30 years now. I’m In regards to the deaths, George in the Silver Spring, Maryland area. Floyd’s hit home. I mean, Alex, you’re a Black man. You know what it takes, WES HAMILTON, SPEAKER AND NONPROFIT FOUNDER: I have a pride-wise, to make a Black man yell in T11-12 incomplete spinal cord injury from multiple gunshot wounds desperation for his mother. That almost to my abdomen back in 2012. I grew up as a nondisabled Black man brought me to tears. in Kansas City, Missouri. The lifestyle that I chose was one that, I believe When he said, “Mama, mama.” Oh now, was designed for a Black man in poverty, living in the streets, really man, I just want to tear up right now be- not even expecting to make it past 21, and I was 24 at the time I was shot. cause I know those times when I’ve yelled At that moment, I knew I was going to die and I didn’t have many regrets like, “I for my mom, I wasn’t in a good place. So wish I would have lived to 80.” My regrets were more personal, about my daugh- my heart went out to him, because I’m ter or something like that. But being shot wasn’t something that I didn’t expect. like, “Man, this brother about to die and he’s calling out for his mother.” Editor’s Note: These interviews were conducted and recorded individually by JACKSON: That really struck a nerve for Alex Jackson, who asked all interviewees the same questions. They were com- a lot of people. You realize that it could bined after the fact to create the “conversation” you see here. happen to you. LUNDY: I’m glad for the younger generation — the rainbow generation as ALEX JACKSON: What are your the policy brutality and the injustice, the far as you got mixed kids, white kids, thoughts on the Black Lives Matter racism. Then it was other things that hap- Asian kids, you got everybody into movement as a whole and the response pened with Ahmaud Arbery, Breonna it. And I think that’s ultimately what to George Floyd’s death? Taylor, the Karen stuff. [Karen is a term we need, because we’ve been fighting NORRIS: What happened this year has applied to white women who use the po- this battle for a long time by ourselves been a perfect storm. The main thing lice to harass innocent Black people.] or with few allies here and there. But was George Floyd’s death. That video You got all this going on during this they’re coming out in full force now. gave people something to use to identify pandemic and quarantine. I think col- And I’m so proud of them for being our a lot of what’s been happening, as far as lectively what happened this year is that civil rights activists.

22 NEW MOBILITY Before I was in this chair, I ran from the cops plenty of times for stupid things, like smoking weed. I got a friend that I grew up with who was running from the cops. He jumped out a window. He died running from the cops. HAMILTON: I’ve always felt like I’ve experienced racism. I lived in a radius of zip codes that were defined here in Kan- sas City as high crime areas. And growing up as a kid, we were always harassed by police because they thought we could be criminals. The history of Kansas City is that [developer] J.C. Nichols created a divid- ing line that eventually the rest of the country implemented. The model was, “Here’s one block that separates the Wes Hamilton talks with a young participant in Disabled But Not Really, the inclusive fitness com- whites from the Blacks,” and the blocks munity Hamilton founded to serve Kansas City’s east side. “How can they grow if growth isn’t represented by us?” he asked on Instagram. on the west side of town have it written in their deeds that you cannot sell a home to a person of color. On the east MINNICK: I haven’t done any protests, My friend used to pick me up, put me in side are all the houses of poverty. So, our but I’m the director of Independent Liv- his car and we’d go ride around. city has a huge racial divide. ing Services at the CIL in my area, Inde- I remember thinking to myself, “If I pendence Now. I’ve been talking to my have a spasm or make a wrong move or JACKSON: Do you think there are any director and saying that we have to do something, this joker is going to shoot me differences in discrimination, based on something. At first, I said, “Let’s have a in the back of my damn head.” And I got race and disability? protest outside the office,” but with the a lot of different things going through my pandemic it’s not safe. body right now. I was like, I’m scared, I HAMILTON: I think about the resources Instead, I had a group of 15 youth want to shit my pants, literally. I’m telling that I was never given as an African with disabilities, and we had a conversa- my friend Jerald, “Let them know I’m in American becoming disabled. Nobody tion about everything that’s going on. It a wheelchair, man. Let them know I’m ever even told me I could drive, bro. I allowed them to talk about their feelings in a wheelchair.” Because I could see the didn’t know I could drive until, like, three and their fears. That was pretty amazing cop in the mirror, where I was sitting at, years later. And so, I started searching because they’re male, female, brown and coming up along the side of the passenger Caucasian. We had a speaker come in to side, and he had his hand on his gun. It help us explain what’s going on and how wasn’t drawn yet, but I was like, “Oh my “ they could have their voices heard safely. God, what are we getting into?” And they’re actually holding a live pro- And I’m thinking to myself, “This test on Zoom later this month. I THINK ABOUT THE is not going to be good.” I mean, I’m laughing about it now, but I was scared RESOURCES THAT I WAS JACKSON: Have you experienced police to death. NEVER GIVEN AS AN brutality or racism, either before or after NORRIS: I’ve dealt with racism all my your accident? AFRICAN AMERICAN life. I feel like a lot of what happened to BECOMING DISABLED. MINNICK: I’ve been in a car and the po- me and a lot of my friends, like gun vio- lice pulled us over and asked me to get lence and the way it’s affecting the Black NOBODY EVER EVEN out. I told him, “Officer, I can’t get out. community, is part of racism in a way. TOLD ME I COULD DRIVE. I’m quadriplegic, and my chair is not in A lot of times when somebody sees me I DIDN'T KNOW I COULD the car.” Thankfully they understood but in a wheelchair, they just assume I was if they hadn’t, how do you deal with that? shot or whatever. But the thing is like, DRIVE UNTIL, LIKE, LUNDY: I was with a friend of mine, why? Why are people so criminalized in THREE YEARS LATER. we were in Washington, D.C., getting the neighborhood? It goes back to a lot ready to go into Georgetown, and we got of things, like poverty, schooling and the pulled over. This was after my accident. way we over-police in the community. ” AUGUST 2020 23 cause I’m a quadriplegic and they don’t feel that my life is valued?” I have two daughters, and I reached out to them and said, “If I get sick and have to go into the hospital, I have a right to have one person with me. I don’t know which one of you that’s going to be, but my life is valued and you have to be my voice if I can’t be my voice.” I also gave them a list of phone numbers to call in case Alex Jackson, above in Charles- it came to the point where doctors say ton, South Carolina, interviews they weren’t going to treat me because I Denver resident Stewart Tucker Lundy, left. have a disability and they were not going to be able to improve my quality of life. hearts. I don’t feel like we JACKSON: That’s so inhumane. get that kind of love, as Afri- can Americans, sometimes. MINNICK: I was looking at Red Table And then funding-wise, Talk with Will and Jada Pinckett Smith, a lot of stuff that we need is and I came across the recorded conver- very expensive, and some- sation of Mr. Hickson’s wife talking to times agencies don’t pay for the doctor. It’s one thing when you read things, or it’s set up so you a story and think, “Oh my God, this is can only make so much crazy,” but to actually hear it and see it, money. And then when you that changes how you feel about things. get out of that, you pay an JACKSON: and I found some hand controls. Then, I It’s really sad to hear things arm and a leg to pay for it out of pocket. found out that there was a place here that like that but it’s good that people are re- So it’s like dang, come on, this system alizing what’s happening. actually did driving classes. is set up to not let you Most of the people that don’t look get far. And then on top like me were able to have access to Craig of that, you’re Black, so Hospital or some other nice spinal cord you’re really not going to injury hospital outside of Kansas City get far. that, when they came back, gave them a little bit more mobility. I meet someone MINNICK: Have you that’s not of color and I ask, “Hey, have heard of Michael Hick- you driven?” And they say, “Oh, yeah. son? He is the 46-year- We’re just waiting to get our van now.” old Black man who And I’m like, are you serious? I’ve had died in Texas. He was people pull up in trucks and stuff and a quadriplegic and he they get their houses remodeled! You was refused healthcare see that? because the doctor said And when I asked all the Black peo- that he had no quality of ple here in our community, have they life. And so he died six heard of driving? No. But now that I days later of starvation. They didn’t feed him. have my nonprofit, I have people that [For more information tell me, “We learned driving while do- about Hickson, see ti- ing rehab.” nyurl.com/y2dzjxws.] It plays a part in everything I do. I called my direc- LUNDY: When somebody gets injured tor and asked, “Oh my at a young age, they’re the flavor of the God, have you heard month. And then it kind of dies off after the story?” She said, a while, because it’s like, “OK, we helped “Yes.” We talked about said person, blah, blah, blah, blah.” And it and I said to her, “If I it’s almost like a charity case. But I’ve get COVID-19 and go to Wes Hamilton is active on Instagram at @iamweshamilton. noticed with a white woman or white the hospital are they not When he posted this photo, he wrote, “I hear you brother, we kids, they’re just America’s little sweet- going to treat me? Be- hear you, they should’ve heard you.”

24 NEW MOBILITY the other hand, it’s being Black. Those had three strikes, he has to go. If I get “ two things go hand-in-hand so much three strikes as the African American, because both sides don’t get the respect. I’m going down. So why is the system From the disability side, I feel like the IF YOU’RE BLACK AND different for a police officer? Just think disability community doesn’t get a lot about it. DISABLED, YOU’RE of support and respect from the main- If you look at child molesters, how GETTING DOUBLE THE stream media. Then, coming from the much time do they usually get? A year? Black side, now people don’t even want to Two years? But if you have marijuana, SHORT END OF THE acknowledge racism and speak about it. they trying to get you 10 years. Why? STICK. THAT HASN’T But look at the landscape and how People have to be treated equally across things trickle down. Then you see who CHANGED. the board. the money goes to, and how programs We have to educate people on his- are implemented. It’s not directly in the tory, and once they get educated they will hands of Black people. If you’re Black and sometimes — not all the time, but some- disabled, you’re getting double the short times — learn. We’re human, we’re peo- end of the stick. That hasn’t changed. ” ple. It’s hard for me to think that someone can think of me as an animal because of JACKSON: How JACKSON: What can the disability can the disability community do to help end racism? community and HAMILTON: Most people have been society as a whole around someone with a disability of a dif- change the viewpoint ferent race, whether at an Abilities Expo that law enforcement has or some seminar. I highly encourage peo- on African Americans? ple with disabilities to use their voice and MINNICK: I knew this question would their platform to support those of a differ- come up. Folks need to be educated on ent race who are part of their community systematic racism. We African Ameri- in whatever they are doing. cans are oppressed, and violence accom- Also, say there’s a sports day or abili- panies that. If I feel like somebody’s knee ty camp, and it’s in a location that maybe is on my neck, I’m going to be angry, you don’t go to because it’s too far or it and I’m going to want to fight because might be in a community like mine. Go. I’m struggling to live. Police officers, and Meet some different people. Find a way people, period, need to be educated on to network. And start listening to dia- that. Not just have to sit down in a class- Namel Norris raps at United logue. It’s hard for me to tell anybody to room and watch videos and hear stories, take more action without understand- Spinal’s 2016 but they have to understand it, actually Roll on Capi- ing first. feel it. tol Hill. LUNDY: I think the visibility part is im- Sometimes when portant. It is putting Black folks, and you learn, it has especially Black men, in elevated areas, to come from the where we’re more visible, and somebody heart. And you have is able to relate to us. Because sometimes to teach people com- I’ll see pictures of a group of disabled folk, passion because if they and it’ll be one or two Black folks. It won’t don’t care about life, be a lot, but just maybe one or two. And then they just don’t then all of the rest of them will be white. care about life. And sometimes with these MINNICK: I think that we have to also police officers, I think be open. We have to find a common they’ve been doing this ground and get together and have these for so long that they discussions. It doesn’t have to be a bunch need to be let go. You’re of us walking down the street protest- not going to be able to ing. Some people are doing Black Lives change their perspec- Matter events via Zoom. tive or what they think. NORRIS: I get confused with the fight If this is an because on one hand, it’s disability. On officer that’s

AUGUST 2020 25 the color of my skin. understanding, instead of But you know what? Ev- going on a stereotype that he erything comes out in the has in his head. Or the mon- light. So there’s a lot of peo- ster that lives in his head. So ple in our lives, even some I think the training would of our white friends, whose help a lot. eyes are being opened today. They’ve got a lot on their And if not for this whole in- shoulders. They have to be cident, we would all still be social workers, they have in that same place of think- to be relationship experts, ing that everything is OK things like that. And I know when it’s not. So this had when I’ve got a lot of stuff on to happen. I’m sorry that it my mind that I’m not going happened, but it has awak- to do too well, so I can only ened people. And enough is imagine what a police officer enough. We’re tired. feels when he has to go out JACKSON: Definitely. and deal with someone in Yeah, hopefully, this will be the public acting all crazy a wake-up call. or whatever. They’re just not trained for it. And some of MINNICK: I think it is a those guys are really young, wake-up call. I pray all the they don’t know nothing. time that it is. People are waking up. We’re seeing it HAMILTON: We’ve got to every day because they’re test the police’s outlook on out on the street every day Black people, especially if marching. Instagram @iamweshamilton they’re a person who’s not of color. Right? Black cops NORRIS: Well, I don’t think we have need training, too, because sometimes to do anything — they have to do it. there’s a code that everyone lives by. So, That’s why I like that Martin Luther “ they fall into that trap. King Jr.’s quote, “It may be true that the Everything has to happen at the law cannot make a man love me, but it grassroots. White people, you’ve got to can keep him from lynching me, and I EVERYTHING HAS TO go to Thanksgiving dinner and have think that is pretty important, also.” I that conversation. You know what I feel like that’s the key: Having things in HAPPEN AT THE GRASS- mean? You’ve got to see Grandma’s place to keep people in order. Then over ROOTS. WHITE PEOPLE, views. Grandma might not even share time, just working through the process YOU’VE GOT TO GO TO her views with you, but she instilled of communication and coexisting with them in your mom. each other will help. I don’t think every- THANKSGIVING DIN- I have an 88-year-old grandma body has to feel the same, but everybody NER AND HAVE THAT who still stays in the hood. She’s got has to be respectful. 80-something grandkids. The majority LUNDY: I think white police officers CONVERSATION. YOU of her kids got killed. Most of the males have a fear that goes back to slave days, KNOW WHAT I MEAN? have been in jail. Eighty-something like, “Oh, he’s going to come get me, I’ve YOU’VE GOT TO SEE grandkids and great-grandkids, and got to draw first,” that kind of thing. I’m the only one that makes her happy And training is essential, as far as how GRANDMA’S VIEWS. every day. I’m the only one showing her you approach someone. GRANDMA MIGHT something different. But she stays in the I was telling my wife this the other house. She hasn’t left that house in 50 day that I think, when you come out of NOT EVEN SHARE HER years, unless we do events. the police academy, if you arrest some- VIEWS WITH YOU, BUT I asked her, “Why you don’t leave?” body, you should know the person you SHE INSTILLED THEM IN “It’s safe in here,” she said. arrest. Like, “Man your aunt, such and I have to let my grandma know that such, you know good and well, she YOUR MOM. it’s safe now. Right? If we want to make wouldn’t want you out here. But I’ve got it safe, then somebody else has to let to take you to jail.” their grandma know that we’re in it to- The police officer would have a better ” gether now. 26 NEW MOBILITY BLACK LIVES MATTER

Illinois, that would not seat our group of employees of this restaurant. There was 10 Black people, claiming they didn’t ac- my proof that this restaurant turned us CHANELLE WIMBISH cept “large groups” and that they were away due to our Blackness. near closing time. It left me wondering As I reflect on this country’s Con- Research Assistant if they did not seat us because we were stitution and how it only accounted for 37, College Park, Maryland Black or because we had two wheel- those who looked like our founding T6 Paraplegia chair users in our group. When I looked fathers, I realize that every other group around the restaurant, I knew we were of people that are not white males were AT THE INTERSECTION being discriminated against, as there not considered. Think about the num- OF BEING A BLACK AND was a large group already seated. It was ber of acts and amendments that have DISABLED WOMAN quite appalling to experience and was thankfully been passed to include Having lived at the intersection of being maddening that we had to find some- women, and Black people, and persons a Black disabled woman for close to 11 where else to eat when we wanted to with disabilities. The Civil Rights Act of years now, I regularly experience various eat there! Ironically, recently an article 1964 ended segregation in public places injustices. Since I am part of both of these came out in one of the Chicago papers and banned employment discrimina- marginalized groups, about stories of racism from patrons and tion on the basis of race, color, religion, sometimes I don’t know if sex or national origin, but the injustice is due to my didn’t cover disability. It’s truly shocking to Blackness or my disability. me that even 30 years after I live in fear of being the passage of the Ameri- physically harmed or ver- “I DON’T KNOW cans with Disabilities Act bally abused. Once when IF THE INJUSTICE in 1990, I still experience I was in the parking lot IS DUE TO MY inaccessible public spaces. of Whole Foods in Provi- BLACKNESS OR How can a restaurant have dence, Rhode Island, a MY DISABILITY.” an accessible parking spot white man verbally as- and ramp into the restau- saulted me for parking rant but not have an acces- in between two spaces. sible bathroom? How can When I told him there a restaurant claim to be ac- were no more accessible cessible but have one step spots and I needed room outside, or its only no-step for my wheelchair, he entrance be in the back al- said that I shouldn’t be ley amongst the trash? out if I have to park like Just as with the Black that! This is a perfect ex- Lives Matter movement ample of “ableism.” Who that is fighting for racial knows if his issue re- equality and justice, the ally was just my parking fight for equal access and job, or the fact that I was justice for all people with Black and disabled and a disabilities is also a tir- woman, but it made me ing but necessary fight. both infuriated and sad. Whether Black or dis- I had every right to be at abled, we are all human that store to collect my beings and deserve the groceries, just as he did. right to live in a world Three years ago, I was free of iniquities amongst at a restaurant in Chicago, our white brethren.

AUGUST 2020 27 JAMES SENBETA as to the cause of my issues. fell into a depressive episode, left the Engineer and Athlete I had to go see a psychiatrist for proof team and flunked out of school. 33, Philadelphia that I was not making up my symptoms Eventually I rebounded and trans- C5-6, T7-8 Spinal Cord Injury and came out with a diagnosis of mod- ferred to the University of Illinois to erate depression. A new set of physicians pursue a degree in agricultural and bio- had the willingness to review my medi- logical engineering due to its renewable HINT: IT’S NOT THE FLU cal history and actually research possible energy systems specialization. While My first experience with being Black with causes. It’s rather amazing that it took there I joined the wheelchair racing a SCI/D came with trying to be diag- years to receive the official diagnosis of team, initially as a way to stay in shape, nosed. I was about 16 or 17 years old when trauma-induced transverse myelitis. but I ended up turning into a Team USA I bruised my spinal cord at C5-6 and T7-8 athlete. But being on the U of I team al- in a sports accident and lost partial con- BENCHED WHILE BLACK lowed me to realize I was dealing with trol of my legs. When I complained about individuals who, despite their disabili- I initially went to the University of Mis- a burning sensation across my torso and ties, displayed some of the greatest ex- souri where I studied civil engineering around my upper abdomen, I was ig- amples of white privilege. It is a sport and played on the wheelchair basket- where you need to have money coming nored. Spinal taps showing elevated an- ball team. During my third year, the tibody count and EMGs showing weak- in to be successful, and so many come coach kept changing the offense every from upper-middle class families whose ened responses were disregarded. week. When I explained to him that I became sick with flu-like symp- parents helped pay for the equipment the ever-changing plans were leading and other fees necessary to compete. toms on my 18th birthday with Malice toward stagnation on the floor, he got at the Palace as the last thing I could upset, questioned my intelligence and remember before passing out. The benched me. When another teammate JOB HUNTING WHILE BLACK next morning, I could not move any- proceeded to do the same, he was re- The worst of what I’ve experienced in thing below my first row of abs, and it warded with a co-captaincy. Yet when terms of being Black is employment. all became completely numb. I went to the team was in a deep deficit due to The thing about being an engineering more neurologists with the expecta- full court presses, I was immediately student while Black is that in all of your tion that they would treat the problem dragged off the bench to help salvage classes you’re either the only one or one but wound up being considered crazy games and keep them somewhat com- of very few, and that still does not pre- when their hypothesis didn’t pan out petitive. At the end of that semester, I pare you for your outlook in terms of trying to get an internship or full-time position as a Black engineer. I stayed in James Senbeta athletics strictly because I had a hard competed at the time obtaining an internship before Rio Paralympics. and after graduating with my bach- elor’s degree. It took me participating in the Rio Paralympic Games, at least two years after graduation, to receive an offer for an internship. In most cases, hiring managers and talent acquisition personnel hire not by what a candidate knows but whom they know, unless you bring something extraordinary to the table. This is usually reinforced by the makeup and experiences of those individuals. Most companies, including those that boasted “Black Lives Mat- ters” after George Floyd, will hesitate to hire anyone that does not look like themselves. I’m thankful for the opportunities I have received, but if I have to rely on hiring managers who are actually looking for talent and potential and not just a cultural fit, my options are far

Photo by Loren Worthington/WorthingtonVisuals.com Loren by Photo slimmer than others’.

28 NEW MOBILITY Jason Hurst, center, surrounds himself with family.

JASON HURST skin than their white counterparts. don’t know that Native Americans kept Self-employed/Mortgage Broker While in the hospital, I suffered from us as slaves, also. Historically, when we 45, New Orleans open wounds and a bone infection. have attached other struggles/move- C5-6 Quadriplegia I was experiencing extremely rough ments to that of Black people, it served bouts of automomic dysreflexia and to delegitimize the Black experience. For severe headaches as a result. I was in that reason, I tackle the two separately. I AM NOT A LAB RAT excruciating pain and was given mor- Sometimes, I’ve felt like a lab rat, literal- phine by my doctor. However, one par- ly! The first thing that many in the medi- ticular nurse refused to give me the pre- KRIS MCELROY cal field see is a Black man who has been scribed morphine, but instead gave me Artist and Advocate shot. Immediately, they have formed an Motrin whenever I requested my pain 35, Eldersburg, Maryland opinion that he must be a drug dealer medicine. She asked me why I needed it, Multiple Disabilities or gang member. On more than a few even though morphine was the medica- occasions, I have had to qualify my situ- tion prescribed by my doctor. This same ation. I was home from college, visiting nurse would subsequently bombard me BLACK LIVES MATTER: friends. My being injured in a drive-by daily with her anti-Obama comments MY EXPERIENCE shooting was strictly an accident. I was while he was running for office. And As the noise grows in the midst of his- in a house, minding my own business, she would force me into racist litmus toric national conversations about race, when gunfire erupted nearby. tests by asking how I felt about Louis discrimination and police brutality, I Several studies over recent years Farrakhan. am reminded of my own history and have confirmed the persistent bias trauma around these conversations and among medical students, and in some LET EACH MOVEMENT my struggle to find space and inclusion cases their seniors, regarding the differ- within them: ences in Black physiology versus white, BE ITS OWN • A history that showed me as a Black particularly in regards to pain toler- The disabled community is a sleep- child I would be called “crippled n- ance. And I experienced this person- ing giant for sure. Most people spend word” and “retarded n-word.” Teachers ally from one particular nurse during about seven years of their life disabled continually kept me after or sent me out my last stint in the hospital. It is an idea — whether due to old age or some oth- of class because my tics, tremors and that harkens back to people like Thom- er disability. But the Black experience coping mechanisms were seen as “dis- as Jefferson and his “Notes on the State in America is unique to Black people ruptions” when I was being mocked and of Virginia,” as well as Dr. Thomas and unlike anybody else’s experience. bullied and hurt because I didn’t know Hamilton, who performed horrific ex- I cringe even when I hear it compared how to fight back. periments on Black slaves in an attempt to the Native American experience be- • A history that showed me as a teen and to prove how much more tolerant they cause as bad as their experience was, young adult that I was seen as a “suspi- are of pain and that Blacks have thicker we were a part of that too. Many people cious” person sitting on a curb. Some-

AUGUST 2020 29 back” followed by having me “demon- small. And without the strategies and strate by acting out what happened.” tools to navigate them, they had a grave Engaging in conversations about impact on my mental health — mental Black Lives Matter/All Black Lives Mat- health already impacted by previous ter continuously shows me, as a Black trauma. man with disabilities, that basic barri- I know I need to share my experi- ers still exist. These barriers exclude my ence. I need to protest. I need to contin- full participation in events, opportuni- ue to call and fight for change. I need to ties and conversations because accom- express my value, and I need to express modations cannot be provided, or the that All Black Lives Matter, period. We location is not wheelchair accessible. need to work to create a society that And if it is wheelchair accessible, I find shows this in action at every level. myself navigating conversations and challenging stereotyped reactions by people calling me an inspiration, a hero STEFAN HENRY Kris McElroy and more before I even have a chance to Businessman and Inventor introduce myself. I have to fight to have 31, New York, New York one would call, and the police would my voice heard. C5-6 Quadriplegia come and question me about who I was, These conversations are mixed in what I was doing and was I drinking or with memories of all those other times on drugs because of how my speech was I got stuck maneuvering between furni- FIGHTING TO RISE slurred and stuttering. ture while people watched but didn’t of- ABOVE THE SYSTEM • A history that showed the police inter- fer to help or when I fell and had to crawl To be honest, I’m lucky. I was one of the rogating me during the SAFE Exam fol- to something I could use to pull myself few people able to experience lifestyles lowing a rape. It felt more like I was the up from the ground as crowds walked outside of my own. I had friends like perpetrator as they asked me “how my by me and no one asked if I was OK. George Gallego, Manny De La Cruz disability impacted my ability to fight These experiences made me feel so and Alex Elegudin who swooped in and R LL Celebrating 30 YEARS of the ADA July 26th, 2020 marked the 30th Anniversary of the Americans 30!on with Disabilities Act (ADA), the landmark civil rights law that protects our members and other people with disabilities from discrimination. United Spinal is proud to be a part of the legacy of the ADA. Throughout our history, we have used the ADA to fight for inclusion of wheelchair users in all aspects of our society. But there is still important work to do!

Mobilize with us and make your voice heard. Learn how you can help fulfill the vision of the ADA, by visiting www.unitedspinal.org/roll-on-30 Thank you to our Roll on 30! Sponsors

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30 NEW MOBILITY chose to mentor me in the ways of living go through this just to get home where my life as someone with a disability and cops are parked on your block waiting Stefan Henry as a man who essentially can only be de- to give out tickets for petty offenses like pendent on myself. being in the park after 10 p.m., jaywalk- The truth of the matter is, most Black ing and “acts of aggression” such as people don’t. asking questions. You are repeatedly We don’t often have people coming getting ticketed to the point where you into our neighborhoods and choosing are too broke to pay your rent. However, to guide us through the ins and outs of you suck it up because the alternative to life. Even when you search for a high- accepting the ticket is essentially death er level of education, private school is by the hands of the police, either in or normally too expensive to afford, and outside of your house. public schools only teach enough to get That’s what Black Lives Matter fights you through tests. They don’t teach you against. We fight against systemic rac- about personal finance or wealth cre- ism. Right now, we fight to stop police ation. They teach you how to work a job. brutality. Whether through abolishing Assuming you get through the the police (which I’m only for if an- school system, as a Black person you other form of law enforcement is pre- probably won’t get a job in your field sented just as quickly as the police are because someone with a whiter name is gone) or defunding the police (which a “better fit” for the company. You can is a reallocation of funds to social ser- try to build a business, but the banks vices that can handle nonviolent issues will refuse to give you loans outside in the community), we need to support of predatory ones that make you pay Black Lives Matter. Everyone needs to was able to be created because Title VII twice as much as the loan costs with a remember that when we set a standard, existed from the Civil Rights Act in Newhigher Mobilityt interest OCT rate 2014 because 6000TRS_mm_346.qxd you are un- then 9/26/2014 we can build9:44 AM off Pageof it. 1 1964. Let’s all remember that helping explainably a “high financial risk.” You The Americans with Disabilities Act each other helps everyone.

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AUGUST 2020 31 Hundreds joined this accessible march in Milwaukee.

BLACK LIVES MATTER

doing, and that we weren’t doing this in Harvey X. Ross separation of what they were doing, but ORGANIZING AN to raise awareness for people with disabilities also in the community. They ACCESSIBLE PROTEST joined our march. You had all the people BY HARVEY X. ROSS with disabilities up front, along with interpreters, and we dictated the pace that After the George Floyd killing, I was talk- everyone went. The other organizers and ing about the Black Lives Matter protests marchers were all open to changing how with three of my coworkers. One guy was they did things. asking, “Why aren’t African American We were marching by a police station, people with disabilities out in the march? and the police department decided to try We know that police brutality happens to to cut us off, detour people from march- people with disabilities, whether it’s phys- ing and set barricades. By doing that, they ical, mental health or whatever.” literally made it inaccessible for people The four of us — a biracial cowork- with disabilities to do what the Constitu- er, two Caucasian coworkers and my- tion and the ADA are set up for us to do. self — we all got together, and within Photo courtesy of the Milwaukee Journal Sentinel With some of the recent protests, a lot three days we were able to mobilize and of people were complaining about looting organize a protest in Milwaukee. We mapped out the march and rioting, but all of this is our government’s fault. The only where there were flat surfaces, so you wouldn’t have to worry times there’s protest is when there’s injustice being done. So if about going up hills. We were able to get interpreters and our government was doing its job, none of this would be neces- medical people to come, and we had enough people that if sary, and none of this would be an issue. anyone needed assistance, they could get it. There were volunteers set up to give marchers water, fruit and other foods. DRIVING WHILE BLACK We got together at the lake front, and our march was all to- I’ve seen it with the police. I’m a C6 quad and I use gloves, gether probably three to four hundred people. We notified the the same ones I wear to push my chair, while I’m driving. organizers of the original BLM marches about what we were I’ve been pulled over three times, once in Chicago and twice

32 NEW MOBILITY here because I had on gloves. In Chi- cago, my sister and I were all coming MY FIRST PROTEST

back from a Cubs game. We had just BY EVITA RUSH

dropped off my mother and other

sister, and the police stopped us. For many years, we as Black

An officer came around with people have let so many in-

his gun drawn and asked why justices slide.

I had gloves on. That situa- I’ve lost count of how

tion could’ve easily turned many times I’ve scrolled

bad, so we had to explain through my social

about my disability. media feed and read

Then here in Milwau- r about some horrific

kee, I was in my parking killing of an inno-

lot, getting ready to get cent and/or unarmed y

out of my modified van. Black person. I get

Photo courtesy of the Milwaukee Journal Sentinel

I dropped something to angry, but I’ve always

just kind of looked the floor and was bent

over, picking it up. I had at my phone, shaking

my gloves on and was us- my head. I say “that’s

ing one hand to brace myself a shame,” and then just

go on about my business.

on the steering wheel. And

the next thing, I look up, and I never would really say any-

thing. As a Black person, par-

there were flashlights and guns in

ticularly a Black woman, it’s kind

my face, and they were like, “Wait a

minute, are you stealing?” of hard to voice your opinions on stuff like this because you don’t want to come off I was like, “Stealing a car? No, this is Evita Rush my car. You see the wheelchair and the as the angry Black woman. ramp?” The situation didn’t turn into Me being a Black person living in the predominantly white city and state anything because I didn’t get all bellig- of Portland, Oregon, I just thought I should be there. This is my first protest. erent, but you never know what could I’ve never really been to one because typically when I think of a protest, I happen. This is just insanity. We were automatically assume that it’s not feasible for me to take part in it because of going through this stuff in the ’60s. a lack of accessibility in the logistics of it. Is the terrain going to be good for We’re in 2020, and we’re going through me in my manual wheelchair? What will parking be like? Will I have to push the same thing. up hills and gravel? I hope our accessible march helped I was fortunate to have a couple of friends and a support system lending join people with disabilities together a hand to make sure I could participate, but it wasn’t really easy for me. I with the other organizers and protes- pushed for probably close to five miles that day, and I didn’t ask for help until tors and taught them something. We the very end when I was coming up on a hill and my shoulders were pretty plan on doing more events — painting much done. It was important for me to just push it all the way through as murals, hosting rallies, things like that. much as possible. As things continue to go on and other The route wasn’t too bad, but I did come on a situation crossing a bridge situations come up, I hope that our with metal grating on it. A lady almost tumbled over me because I had to voices will be included in those events turn around and go the opposite way to get up on a curb that was about 8 without us having to bring attention inches off of the ground, and I needed help to get up on it. to it ourselves. You would think that When I was marching, I remember thinking that to me as a Black person, would be the same thing with race rela- being surrounded by people of all races, mostly white, holding Black Lives tions, but it’s clearly not. In the world, Matter signs, protesting for humanity, equality … just, that meant a lot to me. regardless of color of skin, people with It would be good to be more involved in things like this, but I don’t think or- disabilities are forgotten about. You ganizers are really thinking about people with disabilities. This protest is for have to make yourself prominent. equality, but I do wonder if they’re really thinking of everyone. I hope people who orchestrate these things think about everyone who wants to participate. Harvey X. Ross, a manual wheelchair Think about the route that they’re doing. Reach out to other people who may user and C7 quad, does outreach to un- have a disability and get their input on how to make this inclusive for every- derserved communities for Independence one — people with physical disabilities, blindness, sensory issues — to join in. First, a CIL in Milwaukee, where he is em- If you’re marching for equality, include everyone. I may not stand, but I ployed as an independent living specialist. wanted, and deserved, to be there for the cause like everyone else.

AUGUST 2020 33 BLM AND THE DISABILITY COMMUNITY: BLACK LIVES MATTER

BY JAMES AINSWORTH

he brutal public murder of George tives. Being part of this historic moment Floyd was a touchstone for all of us, brings me a sense of excitement and anxi- all around the world. With George ety in the face of new possibilities, height- Floyd’s tragic passing on Memorial Day, ened tensions and changing views. time stood still as our collective emo- tions reached a tipping point and people burning with the rage and pain of injus- NOTHING ABOUT tice had finally had enough. In recent WHO I AM MATTERED years, a parade of appalling killings of One day nearly 17 years ago, my inner unarmed Black men — Trayvon Martin, sense of myself and my life was tested un- Tamir Rice, Michael Brown, Eric Garner, expectedly, as I was driving through Five Philando Castille, Ahmaud Arbery, Bo- Points, the African American inner-city tham Jean, Freddie Gray and many oth- community in my hometown of Denver, ers — sparked numerous protests, social Colorado. I wanted to visit a friend of media debates and cries for justice that mine, James Chapman, who lived near the were largely unheeded heart of Five Points and also happens to by American society be a paraplegic. I drove a two-door Dodge as a whole. But some- Avenger and had to go through a tedious thing about the casual process of taking my wheelchair apart, hatred of Minneapolis putting the wheels in the back of my car, police officer Derrick taking the seat cushion out and folding Chauvin as he choked the life out of George the frame and pulling it across my body to Floyd by kneeling on place the chair in the back seat of my car his neck for 8 minutes every time I had to transfer in or out. and 46 seconds pro- There was no parking on the street that voked a visceral reac- day, so I pulled up along a side alley next to tion that could not be the lawn so I could wheel myself about 20 stomached by most or 30 feet to my friend’s apartment. A mo- Americans. torcycle cop watched me and complained How do we reconcile about where I parked after I came back to ourselves with this mo- my car, even though I was not blocking ment in history? As an traffic and he could obviously see that I African American who used a wheelchair. As he spoke to me, I tried has a T12 spinal cord to explain to him that there was no park- injury and has been living on the street and in my condition, it was ing as a wheelchair user physically painful for me to try to park two for 18 years, my viewing or three blocks away and wheel over to my these issues through the friend’s place. I was just trying to see if he lens of race and disabil- was home — I could figure out the parking ity yields a complicated later. He looked at me with a mean sneer set of vulnerabilities, and said, “Are you talking back to me?!?” To insights and perspec- be clear, he was threatening me. He was es-

34 NEW MOBILITY sentially saying, “Shut up and get in your the use of body cameras, bans car, or I will put you in jail.” choke holds and limits I was shocked and stunned. I have a qualified immunity for college degree from an Ivy League uni- police officers, among versity. I am well-spoken, thoughtful, other important polic- kind, considerate and helpful, and I am ing reforms. Hopeful- never loud or aggressive. I realized in ly, similar laws will be that moment that nothing about who I passed in other states am in my personality, education, char- and municipalities, as acter or demeanor meant anything to national policing re- this cop, who was lording his authority form legislation recently over me in that situation. I don’t live in passed the U.S. House of or near Five Points, but I immediately Representatives and is cur- saw why there are problems with some rently being debated in the police officers in that community. In U.S. Senate. As happened with retrospect, it is astounding that the offi- the passage of the ADA in 1990, there cer didn’t simply offer to assist — where is today perhaps a collective sigh of relief was the “to serve and protect” ethos? that a critical mass of political leaders has If you are African American, you may awakened to the importance of taking on be fine throughout eight or nine encoun- a widespread systemic issue relating to ters with the majority of well-intentioned social change. He told me that his main problem with police officers who try to do their jobs I hope telling my story will enable being a police officer was that nobody with integrity. But that one bad-apple people not of color to understand the ever invited him to sit down and have a cop out of 10 can literally be deadly for problems that a Black person might cup of coffee. Instead, he was only called a Black person. For all my efforts at per- face under the wrong circumstances when there was trouble. I would like to sonal peace — adaptive yoga, meditation, with the wrong policeman. The mur- encourage other people to befriend a po- prayer, being a good Christian and at- der of George Floyd is a turning point; liceman; the more we get to know each tending church services — I was remind- our society is, and should have been other, the more we will break down bar- ed of that potentially-dangerous reality all along, moving beyond a state of de- riers that create separation, emotional on that disturbing day in Five Points. nial. Supporting systemic reforms in divisions, anxiety and confusion. If the threat of police violence can how policemen are hired, trained and In the midst of this historic moment, happen to me, an obvious paraplegic held accountable will go a long way in it is my hope that people of all racial, who uses a wheelchair, it can happen to changing the culture of policing and cultural, nondisabled or disabled back- anyone. These ongoing police killings will also help create opportunities to grounds can learn to approach each and abuses captured on video — along build new bridges between police de- other with love and compassion and with the attempted cover-ups — compel partments and Black communities. nuanced understanding. Just as with us as a society to make systemic chang- As a man with a disability, and as an the monumental passage of the ADA es in how police conduct their work and African American, I often find myself 30 years ago, American society needs are held accountable for their actions. breaking through people’s stereotyped broad, systemic institutional change perceptions of me, to let them under- in policing, criminal justice reform WE’RE AT A stand that I am a human being with and other racial issues. However, along love, dignity and an inner sense of val- with and beyond the changing of laws, TURNING POINT ue, deserving of recognition. People on flags and monuments, perhaps build- As we celebrate 30 years of the Ameri- different sides of racial or cultural di- ing bridges of communication and un- cans with Disabilities Act, we can see vides should take risks and reach out to derstanding between Black and white, that we still have a long way to go in mak- try to talk with each other. Get involved young and old, nondisabled and those ing our society more compassionate and with community groups, churches or with all types of disabilities is some- understanding of people who are outside organizations that work on these issues. thing we can all partake in, collectively of the ordinary narratives of mainstream Simple day-to-day interactions can be and interpersonally. American society. In response to the life-affirming and at times can lead to protests surrounding George Floyd and authentic friendships. James Ainsworth is a journalist and Elijah McClain, the Colorado State Leg- Earlier this year, before the George copywriter in Denver, Colorado. He can islature recently passed Senate Bill 217, Floyd incident, I developed a friendship be reached through his website, island- which has been signed into law by Gov- with a former cop who had been in the ofspicemedia.com and his blog, island- ernor Jared Polis. The new law mandates Denver Police Department for 20 years. ofspice.wordpress.com.

AUGUST 2020 35 THE POWER OF PEER SUPPORT BY RICHARD HOLICKY

lthough an incomplete quad for 31 years, I only attended my first support group at A Craig Hospital about three years ago. I’ve long recognized the importance of peer support during rehab and have been fortunate enough to learn from some true trail- blazers throughout the years, but I didn’t have access to a group of my own. This changed when a pair of Craig staff members — social worker Kathy Hulse and psychologist Lisa Payne — launched one. Having lost several chair pals to the Great Beyond, I knew I needed peers to help me separate reality from my tendency toward drama and hyperbole — and so I joined. Our group ranges from people who are a few months post-rehab to a member who was injured more than 50 years ago. Some weeks we have well over 200 years of SCI/D experience in the room. We’re chemists, social workers, supervi- sors, engineers, students, teachers, volunteers, min- ers, counselors and ne’er-do-wells who come together weekly to seek and offer support. Some spouses and other family caregivers attend as well, and they offer a totally different and often instructive perspective. Once a month the men and women meet separately. Somehow everyone pretty much gets their needs met and grows in the process. We normally have a dozen or more wheelers in each weekly session and we try to establish a topic for the hour to keep us focused and prevent a decline into a drama-laden bitch session. The magic comes as we see how our challenges and obstacles are similar to those experienced by other group members, and then experiment with a variety of successful solutions they have employed.

‘THE GROUP LETS ME SEE MYSELF IN A DIFFERENT LIGHT.’ Jon Forbes, 50, joined the group after our co-leader repeatedly suggested he attend. Forbes, a T6 paraplegic, was coming off a particularly rough losing streak. Following years of neuropathic pain, he underwent two successful dorsal

root entry zone surgeries, only to have it return when the Illustration by Mark Weber

36 NEW MOBILITY hardware that had been stabilizing his back broke down. The want to be alive,” says Ed, who also attends the weekly sessions. unrelenting agony returned and remains. After six or eight months, when Robbin felt safe enough He was deputy treasurer of the state of Colorado when to talk, her fellow group members listened and understood both his chronic pain and the pressure of the position got where she was coming from. “They opened to him. “I lost it,” he says. “And told the entire board my eyes to how good I have it,” she of the $40 billion public employee pension fund in says. “I didn’t lose friends, but Colorado to ‘go fuck themselves’ in a publicly- made friends. Ed didn’t leave recorded meeting. I was totally prepared to be me. Instead, he left a job he fired, but not for the public flogging I would loved to take care of me. I started looking take from the print and TV media.” I’m not sure I could do at myself in a The combination of relentless neuro- what he does.” pathic pain, terrible publicity, no job pros- Robbin says join- different light, and I pects, the death of his beloved cat and ing the group and shined that light the loss of his dream home all crashed being around other together to create an overwhelming cri- wheelchair users facing on some other sis. Suicide was his plan. That’s when similar problems was he joined the group. the best thing she’s ever more meaningful After a while Forbes began to see done. She discovered her possibilities. aspects of his own situation while peers are funny, loving and listening to other people’s prob- serious. She receives and wel- lems. In time, as he began identify- comes support, and finds pur- ing with his fellow group members, pose in being able to offer something he felt less isolated and more con- that might help someone else. As a bonus, nected to them. “I started looking at she learns her own compassion deepens when she is able to myself in a different light, and I shined realize other people’s pain. that light on some other more mean- She keeps coming back every week, despite a 45-minute ingful possibilities,” he says. “My general drive each way. mood began to change, and I noticed I was a bit more optimistic. Something was work- ‘SOME OF YOU HAVE SEEN IT ALL, ing and that was good enough.” He values the openness of his fellow group BUT MY EYES ARE JUST OPENING UP.’ Kirsten Rosvall, a C6 quadriplegic due to a surgical mishap members and the comfort of being encouraged to in late 2018, discovered the group when it appeared on her talk through his problems with good, honest folk. “The outpatient schedule during a routine PT/OT visit not long af- group gives me information that is either relevant to my- ter discharge. Since Rosvall, 56, has a master’s in social work self or my mom, who’s dealing with severe Parkinson’s,” he and has clocked about 15 years in childhood protective ser- says. “Someday, I will be able to measure what I bring to the vices, she’s had positive experiences with groups and decided group, but for now, I’m feeling a bit selfish.” to check this one out. She describes herself as initially clueless to wheelchair cul- ‘I FOUND OUT I WASN’T THE ONLY ture and says she is taking it all in. “I think there’s this ‘outer PERSON IN A WHEELCHAIR.’ culture’ of generally-shared wheelchair experiences and an Robbin Smith, 63, didn’t know what to expect after a bad ste- ‘inner culture’ that comes with many years of experience. I’m roid injection caused her T10 paraplegia and says she spent in that outer culture, usually listening and learning,” she says. two years in tears. “Most of this is still pretty new to me and I don’t get every- “Initially I was quiet, afraid of how others might react. thing people talk about. Some have seen it all, but my eyes are I was terribly ashamed and certain everyone was looking just opening up.” at me,” she says. Children staring didn’t bother her until Rosvall brings vocational insights along with her own their parents yanked them away as if she was contagious. shared wheelchair experiences. “What I like most is what I And although she knew her family loved her, she didn’t learn and how everyone shares information about anything like herself very much. and everything,” she says. “And I like the energy and knowl- Then Ed, her husband of four decades, talked her into edge that Kathy and Lisa bring. Mostly group is a great place checking out the group. “Those first couple of years, she didn’t to grow, and I’ve got a lot to learn.

AUGUST 2020 37 She appreciates the humor and support the group offers. special. I’ve made new friends, and I’m with people who un- “It’s also nice to touch base with people each week and to derstand what I —what we all — deal with, and there’s always have that connection in this time of isolation,” she says. something to take home.” Gerhardt appreciates the atmosphere of camaraderie, non- ‘PEOPLE ARE NOT ONLY ACCEPTED, judgment and total acceptance. “Actually, everyone is not only BUT THEIR DIFFERENCES ARE accepted, but their differences are honored. That makes for a very powerful support system. I’ve got my family and my HONORED.’ church family,” she says. “And now I have my group family.” Dorie Gerhardt comes to group with all the lessons gained by 54 years of wheeling. She was a day shy of 15 when an auto- ‘I LEARN A GREAT DEAL THAT I mobile accident caused her C5-6 injury. When Hulse suggested Gerhardt check out the group, she KNOW I’LL BE ABLE TO USE EVERY did and has returned most every week since. “I loved that first SINGLE DAY.’ session. I saw immediately what Kathy described,” she says. Sean Smith was recovering from Guillain-Barré syndrome “People’s willingness to share and not judge makes this group at Craig when his social worker suggested he attend a session. “I knew immediately I was in the right place,” says Smith. “I call it class because I learn so much.” At 51, Smith is the group’s Jeff Spicoli: He’s quick with a THE GROUP’S SECRET joke or laugh and, like Fast Times at Ridgemont High’s famous stoner, not shy about recommending the benefits of SAUCE FOR SUCCESS THC for stress relief. He can also be quite serious. “What I I’ve seen my share of groups, both as a leader learn is often something I can use every single day, like how and now as a participant, and I’ve learned that to pick stuff up off the floor without falling out of my chair.” there are a few aspects all successful ones share. Smith appreciates the peace of mind he gets from the Participants must commit to confidentiality — group. “There’s plenty to worry about, but I’ve learned to just what’s said in group stays in group. Every person take care of business,” he says. “There are people in group interviewed spoke of the safety that commitment who do that, and I appreciate the no-nonsense aspect they created. They also valued the support given and bring. I’m so lucky to be part of it.” being in a nonjudgmental space. Each person Smith was the head of maintenance for an apartment spoke of the welcoming atmosphere, as well as complex before his illness and appreciates the group’s diver- the opportunity to learn and share. These simple sity of experience. “We’ve all been knocked down, and this ground rules create a certain formality and an group is helping me stand like a man again,” he says. atmosphere that facilitates growth. “I’ve done various groups over the years and ‘THE FEELING OF COMMUNITY this one has a secret sauce,” says co-leader Kathy Hulse, a social worker at Craig Hospital. “It’s not AND CONNECTEDNESS KEEPS ME cliquey, not judgmental, and not centered on one COMING BACK.’ specific person or persons.” Being a part of group has reaffirmed that I need to be with She says the group’s been instrumental in people who, regardless of background, age, gender, education helping newly-injured folks adapt and she also or financial station, all share the profound, life-changing and appreciates the perspectives of caregivers and potentially-transformative experience of paralysis. We come spouses. “After 31 years I continue to be im- together weekly to seek or lend support to each other, and it’s a pressed with how resilient people are.” privilege to join with my peers in creating an atmosphere safe Craig Hospital psychologist and co-leader Lisa enough for us to cry, laugh, and offer and receive acceptance. Payne often suggests to people who have been Our group is free of judgment, yet heavy with encourage- recently discharged from rehab that they try a ment. I need their support to deal with my latest set of rapids. support group. “Most initially say no, that they’re I gain some measure of succor by sitting silently for an hour not ‘group people,’” she says. ”If they come a few with these folks; it’s even better for me when I talk. times, they see there’s no pressure to talk and that It hardly matters whether you are five months or five they are free to just listen. Soon many of them get decades post discharge, everyone runs into bumps in the hooked and become regular, vocal members.” road and can use some help, advice and support. And we should always welcome any opportunity to offer a shoulder to lean on.

38 NEW MOBILITY DAILYBy DILEMMASSheri Denkensohn-Trott

SPEAKING UP ABOUT PANDEMIC MASK RULES

Q. I’m having an issue with people not on one of your outings. Requirements high-risk individuals, but you don’t wearing masks. I’m a paraplegic, and I regarding masking at retail have to do this from inside the shop. live in an urban community. I’d like to go establishments differ by jurisdiction Consider calling and asking to speak out to my favorite local coffee shop and and are likely to change frequently with a manager, either on the phone show my support while we’re all dealing because of the shifting nature of or in person outside, to avoid being with COVID-19, but some customers the COVID-19 situation. Before indoors with unmasked customers. there don’t wear masks. I always wear engaging in any conversations with If you see widespread violations of one and, because of lung complications other patrons and/or management, current COVID-19 policies in your from when I was first injured, I’m mindful be aware of the regulations as community, you may want to alert of whether others have face coverings. well as related exceptions. For your local, county, state and/or federal I went to buy coffee the other day and example, some jurisdictions have representatives. could see through the shop’s windows exceptions for individuals with Another idea that eliminates that the employees behind the coffee disabilities who cannot put on or risk but supports the shop is to call bar all had masks. The shop allows only take off a mask independently. Also, ahead to order your drink and have it a few customers at a time, to maintain research reporting mechanisms for brought out to you. When the drink appropriate distancing according to noncompliance with COVID-19 rules is delivered, mention that you called current rules, but some patrons weren’t within your jurisdiction; these may ahead because other customers aren’t wearing masks, and I didn’t see a sign include email addresses, online forms, wearing masks and that endangers requiring face coverings. I wanted to say or telephone numbers for the local your health. Lastly, you can decide something to the people without masks health department or other entities to avoid the issue entirely by either but worried they wouldn’t be receptive monitoring COVID-19. choosing to remain at home or staying to my comments or could potentially After educating yourself, you have away from establishments that are respond with verbal aggression. Plus, I a few options that may be safer and not complying with current rules and don’t like confrontation, so I went home more effective than confronting a regulations related to COVID-19. without coffee. How can I go out to enjoy non-masked patron directly. You Many disability advocates feel my favorite places without endangering might approach the management strongly about speaking up in my health? How do I help people of the coffee shop to inquire about whatever format is most effective, understand that by not wearing masks, its COVID-19 policies in general. they put me at risk? If local regulations do require including on social media, as the customers to wear masks inside retail risk of developing severe symptoms he decisions you make about establishments like coffee shops, you from COVID-19 can be greater for what health precautions might follow up with examples of individuals with disabilities than for Tyou should take regarding noncompliance you witnessed and those without. It is up to you to decide COVID-19 are very personal, and ask management how the policy is whether or not to speak up. you should start by consulting your being enforced. Additionally, if the In sum, you have choices about primary care doctor. shop requires face coverings and you your comfort levels and the risks When it comes to going out, know see noncompliant customers on your you are willing to take based on your the current COVID-19 rules in your next visit, you might opt to report personal health and living situations. area. It’s also a good idea to maintain these patrons to management. You It also remains your prerogative to a calendar of your activities outside may need to explain the rules to the choose the advocacy route you want of your home to make contact tracing managers and educate them on why it to pursue when dealing with COVID- easier if you are exposed to the virus is important to protect you and other 19-policy violations you witness.

AUGUST 2020 39 IN THE By Teal Sherer MEDIA Alsaleh

VIDEO GAME REPRESENTATION omma, you’ve gotta see this,” my 5-year-old son River says “Mfrom the living room where he is playing Lego City Undercover on the Xbox. “I unlocked a wheelchair. It’s so cool.” As I roll into the room, I see his character, Chase McCain, quickly push down a street. “You’ve gotta try it,” he says. I grab a controller and join the game. Once I choose my wheelchair accent color (teal of course), we race each other up a hill. At the top, we go over a cliff, soar through the air, and land on the street below. “Wow. Let’s do that again,” says River. Because disability is rarely seen in entertainment and is often portrayed in stereotypes, I’m always surprised how meaningful it is when I feel represented. “The feeling of seeing even a glimpse of who you are in a positive light is profound,” says Cherry Thompson in “You Can Take an Arrow to the Knee and Still Meet Cerise, modeled on real-life wheelchair user Cherry Thompson. be an Adventurer,” a talk Thompson gave to the Game Developers Conference in 2019. “It’s a nudge that couldn’t play ball or swim, gaming was a developers how to design with acces- you are not alone, and more important- way for him to connect with other kids. sibility in mind and consults on the way ly, that you are welcome.” “Almost always the good guys are big, disabled characters are portrayed. In the 35-minute presentation, beautiful, bold, muscular, and the bad One of the promising upcoming Thompson, an accessibility consultant guys are disabled, disfigured and have games, Marvel’s Avengers — a third who uses a wheelchair and is autistic, not something wrong with them,” says the person action-adventure developed only explores why disability representa- 39-year-old. “They are always angry at by Crystal Dynamics set to release on tion is so powerful, but why the gaming the world, always mad about life, and September 4, 2020 — also consulted industry keeps getting it wrong and how therefore they are going to do this horri- with Thompson, who did motion cap- it can do better. “The lack of representa- ble thing, like blow up the world because ture for a wheelchair-using nonplayable tion — or even worse, bad representation they are disabled.” character, Cerise. — can reinforce stigma,” Thompson says. Spohn, who received the South “Our goal is to normalize representa- Steven Spohn is the chief operations by Southwest (SXSW) Game Industry tion within our game world by reflecting officer of AbleGamers, a nonprofit that Champion of Change Award earlier this the diversity of the real world,” says provides custom setups to people with year, is optimistic, though, about the Meagan Marie, the senior community disabilities, and has been playing video future of disability representation in and social media manager of Crystal games since he was a child growing up video games. AbleGamers has a certifi- Dynamics, in an interview with video with spinal muscular atrophy. Because he cation program that teaches video game game developer Square Enix. “There are

40 NEW MOBILITY scenes in Marvel’s Avengers, like the cel- characters do things realistic to wheeling Animal Crossing: New Horizons on ebratory day for Avengers, A-Day, where chair users, like drive or use a grabber to Nintendo Switch. In the game, there is this diversity is reflected in a crowd of get stuff off a shelf — things that have a a wheelchair. You can customize the people who are all sharing their passion tactile, interactive element to it.” seat color pattern, which is cool, but for superheroes.” “If I were going to advocate for a the wheelchair doesn’t move; it’s a Spohn’s favorite disabled video game character,” says Spohn, “I’d like to see piece of furniture. Hopefully Nintendo character is Pharah from Overwatch, a single-player, story-driven narrative will address this in an update. As we a popular shooter that features team- where a profoundly physically disabled know, a wheelchair isn’t something you based combat matches set on a near character — not just missing part of one are stuck in — it gives you freedom to future Earth. “Her background is vague, ear — has an entire romantic story arc explore the world. but her arms and legs have been and saves the day.” To watch Thompson’s presentation, visit replaced and she has a backpack for My son and I recently started play- youtu.be/Vb39BFs1UK0 movement. She is essentially half-bionic. They don’t go into if she was in a trauma or born that way —they just say that her mind and body are agile and able, and Do you Believe in Magic? that she needed some technology to enhance that. I am a fan of Iron Man and love that meching-yourself-up motif.” Bowel & Bladder Basics are our Business! “If a quarter Urological Supplements Suppositories Cran Magic + ™ The Magic Bullet™ of players are bladder, kidney & urinary health. safe & sure! Faster acting, disabled, why are water soluble suppositories. less than 1% of annose agic™ M M Bowel Supplements our characters? maintain a healthy urinary tract- flush ” away E.coli. Magic Cleanse™ — Cherry Thompson, “You Can promotes fuller movements Take an Arrow to the Knee and with greater ease still be an Adventurer” (and less time).

John Warren, the head of media of nzyme agic™ Fanbyte, one of the largest digital media E M better digestion= better elimi- networks in the world focused on the nation. fandoms of gaming, entertainment and tech, appreciates the quirky and humorous furniture-moving video game Moving Out, where every character has the customiz- able option of being in a wheelchair. “The feeling of having to move out of your house is a universal one and having a character that is in a wheelchair and basically acts the exact same way … I appreciate Mention This * that,” says Warren, who has minicore Ad and Receive myopathy, which causes muscle weakness. Warren hopes to see more diver- 5% OFF sity in the way characters who use wheelchairs are portrayed in games. “Wheelchair users are not a one-size- www.conceptsinconfidence.com fits-all category. You never really see them move their bodies in ways other 2500 Quantum Lakes Dr. #214 than just arms push, neck turn, mouth Boynton Beach, FL 33426 move. There is such a wide spectrum … (800) 822-4050 like wheelchair users who are partially *one time discount per customer ambulatory. I’d also like to see these

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Please mail to: 120 capsules for only $25.95 120-34 Queens Boulevard, Suite 320 Kew Gardens, NY 11415 Or submit your request electronically to: [email protected] or at www.newmobility.com DIESTCO MANUFACTURING Or call: CORPORATION 800-404-2898 x7203

42 NEW MOBILITY CLASSIFIEDS

FOR SALE VACATIONS WHY THE MIRACLE OF LIFE NO FERTI CARE® 2016 FES 300 cycle - 3 muscle New Zealand Accessible Vehicle LONGER NEEDS A MIRACLE PERSONAL • Treats men and women group therapy. Purchased from Hire. New Zealand disability • VA approved Restorative Therapies for $13,300. vehicles, hand control cars, left foot • Inexpensive alternative With any Ferticare, Viberect or to fertility clinics purchase over 250.00 receive a Asking $7,000 OBO. Call 360-461- accelerator cars for hire. Explore • Help with incontinence *while supplies last FREE 2oz SANITIZER!* 5569 New Zealand – we make it easy! We thru Kegel Exercise Orion Medical Group, Inc. • Ferti Care 2.0 are happy to pass on our former New Product, Electric and Manual (Full D.M.E. Pharmacy Specializing S.C.I) clients’ recommendations of acces- Tel. 714-649-9284 / 1-888-64-ORION (67466) / Fax. 714-594-4038 New Female Wheelchair seat pouch, $14.99 visit Version of the [email protected] sible activities and accommodation. Ferti Care www.cushpocket.com” www.medicalvibrator.com Available Now See www.freedom mobility.co.nz Nationwide Wheelchair Van Rentals. For the next time you Ocean-front condo, wheel- want to get out, vacation, doctors chair friendly, sleeps six, pool, EMPOWERMENT appointment, or try before you buy. boardwalk to beach. Rents daily, weekly, monthly. St. Simons Is., inACTION Learn more at www.BLVD.com Members Raising GA. [email protected] 419- Over 1500 wheelchair Accessible Spinal Cord Injury 569-6114. Vehicles for sale at one website. A Awareness Nationwide complete selection of New, Used Cape May farmhouse near beach. and Pre-Owned wheelchair vehicles First floor entirely wheelchair acces- www.unitedspinal.org from dealers and private parties sible. Sleeps eight. Visit www. nationwide. Check it out today. beautifullyaccessible.com for more www.blvd.com info and reservations.

New LEVO standing electric wheelchair. $19,950. Call 530-906-5553 WANTED PATHWAYSTOEMPLOYMENT Wheelchair Accessible Motor Home United Spinal Association’s Pathways to Employment (PTE) for a charity fundraiser from May- LEGAL program supports the pursuit of new job opportunities and Do you or your loved one need October 2021. Rent or buy. Call a successful career for people with spinal cord injuries (SCI) 781-545-3744 or e-mail: wrossma@ by providing the tools and support necessary to successfully legal assistance for injuries resulting overcome barriers to gainful employment. from an accident or medical mal- aol.com. www.unitedspinal.org/pathways-to-employment/ practice? We are here to assist you in finding the best lawyer for your specific case. Call us 1-888-888- ADVERTISE 6470. www.findinjurylaw.com Meet New Member Anna Adams WITH NEW MOBILITY! Age 36, from Deltona, Florida VACATIONS Myelomeningocele Spina Bifida, Hydrocephalus and Arnold Chiari St. Augustine Beach 3 bedroom To place your Malformation condo. Great location across from Founder, Mind, Body and Soul ocean in historic Florida North East. classified ad or to Solutions Recent renovation for para owner. get information on Excellent local accessible activities. Why I joined United Spinal: I joined United Spinal Associa- Contact: [email protected]. advertising tion because I can relate to many of your members when it comes to living with a disability. View at http://wheelchairtraveling. rates, call: com/florida-beach-house-rental/ Can’t live without: The one thing I cannot live without is 800-404-2898, ext. my lightweight Quickie sports chair. Florida Keys! Accessible 2 /bed- 7253 or email your room Waterfront Home, Large If I could change one thing: I would create a clinic where Bathroom with Roll-In Shower. request to mlee@ disabled patients could have all their doctors come together in one place in order to come up with the best Spectacular View, Resort Amenities unitedspinal.org solutions to help patients live a full life with a disability. included. 561-627-1941. www. placidaccess.com Meet other members or join United Spinal at unitedspinal.org

AUGUST 2020 43 WHEELCHAIR LAST CONFIDENTIAL WORD OVERHEARD & ABSURD I was at a neighbor’s house party this summer, doing the social distancing thing as people do now. A couple of the neighbors brought their young adult sons, and I remember discussing the college experience with them at some Instagram Follow point, but I didn’t think any- #socialdistancewin thing of it. Later that night, after the number of guests had thinned, I was sitting on a quiet part of their deck and overheard the voices of those same boys coming from below me. They couldn’t see me and didn’t know I was within listening distance. I wasn’t trying to eavesdrop, but when I heard them bring up “the MILF in the wheelchair,” I couldn’t unhear their conversation. That term pretty much narrowed it down to me, as the only woman in a wheelchair at the party. On the one hand, it was flattering that they thought I was attractive, but MILF?! That made me feel really old. Forget the wheelchair part, I’m a single woman in my early 30s. I’m no Mrs. Robinson or even Stifler’s mom. Follow New Mobility on Instagram at Not Your Mombshell @newmobilitymag

PLEASE REMAIN SEATED www.matbarton.com

44 NEW MOBILITY VetsFirst is a program of United Spinal Association that assists veterans and their eligible family members in obtaining the benefits they are entitled to, deserve and need.

Our Mission Timely Support VetsFirst leads the way in advocating for veterans living with We connect with thousands of veterans and active military disabilities and ensuring they achieve the highest level of servicemen and women annually through our call center and independence and quality of life. online help desk, Ask VetsFirst. Our staff takes the time to address each inquiry, offering guidance with questions on Our History military separation, claims appeals, and state benefits. Visit As a program of United Spinal Association, VetsFirst has a http://helpdesk.vetsfirst.org/ to submit your questions and long and illustrious history assisting and representing veter- receive quick response from our knowledgeable staff. ans and their eligible family members. United Spinal—a VA Valuable Resources recognized veterans service organization—strives to ensure In addition to providing individual support and counseling the organization remains an instrument for veterans. services, VetsFirst offers timely news and information across the spectrum of issues presently impacting the veterans About VetsFirst community, including state benefits, separating from the VetsFirst brings to bear seventy years of expertise in helping military, as well as exclusive feature stories on military health America’s veterans with disabilities, their spouses, depen- care and VA funding and compensation. dents, survivors and other eligible family members receive health care, disability compensation, rehabilitation and other Our Core Beliefs benefits offered by the U.S. Department of Veterans Affairs. VetsFirst’s priorities are based on three core principles that We supply direct representation, proactive legislative and will improve the lives of veterans with disabilities. regulatory advocacy, individual support and counseling services, guidance on education and employment, timely news Community Integration and Independence— We support and information and valuable self-help guides. policies that help veterans with disabilities reintegrate into their communities and achieve independence. VetsFirst advocates nationally for all generations of veterans, including individuals living with post-traumatic stress disor- Timely Access to Quality VA Health Care and Benefits— der and traumatic brain injuries. Our advocacy efforts go far We support improved access to VA health care and compen- beyond offering words of support and encouragement. We sation and pension benefits that are the lifeline for many take this fight to Capitol Hill to bring attention to issues that veterans with significant disabilities. matter most to the men and women who proudly served our country. Rights of Veterans with Disabilities— We believe that discrimination against disabled veterans that produces barriers to housing, employment, transportation, health care, and H other programs and services must be eliminated. www.vetsfirst.org Yes, You CAN!

Serving the Community Since 1979

At Abilities Expo, you can... • Build independence with the latest products • Learn tips and life hacks at workshops • Improve fitness with adaptive sports FREE • Open doors with service animals ADMISSION • Change the game with new tech • Get answers from the experts • Embrace your abilities through dance • Access facts on therapeutic cannabis • And so much more!

Precautionary health procedures will be in place at the Expo. Stay safe, everybody!

Virtual Experience Houston New York Metro Phoenix June 19-21, 2020 July 31-Aug. 2, 2020 Aug. 14-16, 2020 Sept. 11-13, 2020

Toronto Dallas Los Angeles Chicago Oct. 2-4, 2020 Dec. 11-13, 2020 Feb. 26-28, 2021 June 25-27, 2021

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