New Mobility Magazine Jan-Feb 2022 by United Spinal Association

Emergency Hacks Repurposing Used Gear Life in Russia

THE MEMBERSHIP PUBLICATION OF UNITED SPINAL ASSOCIATION

PEOPLE OF THE YEAR: THE REALITY POETS

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JAN-FEB 2022

a special thanks to those who support

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

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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 VetsFirst leads the way in advocating for veterans living with disabilities and ensuring they achieve the highest level of independence and quality of life. Our History As a program of United Spinal Association, VetsFirst has a long and illustrious history assisting and representing veterans and their eligible family members. United Spinal—a VA recognized veterans service organization—strives to ensure the organization remains an instrument for veterans. About VetsFirst VetsFirst brings to bear seventy years of expertise in helping America’s veterans with disabilities, their spouses, dependents, survivors and other eligible family members receive health care, disability compensation, rehabilitation and other benefits offered by the U.S. Department of Veterans Affairs. We supply direct representation, proactive legislative and regulatory advocacy, individual support and counseling services, guidance on education and employment, timely news and information and valuable self-help guides. VetsFirst advocates nationally for all generations of veterans, including individuals living with post-traumatic stress disorder and traumatic brain injuries. Our advocacy efforts go far beyond offering words of support and encouragement. We take this fight to Capitol Hill to bring attention to issues that matter most to the men and women who proudly served our country.

Timely Support We connect with thousands of veterans and active military servicemen and women annually through our call center and online help desk, Ask VetsFirst. Our staff takes the time to address each inquiry, offering guidance with questions on military separation, claims appeals, and state benefits. Visit http://helpdesk.vetsfirst.org/ to submit your questions and receive quick response from our knowledgeable staff. Valuable Resources In addition to providing individual support and counseling services, VetsFirst offers timely news and information across the spectrum of issues presently impacting the veterans community, including state benefits, separating from the military, as well as exclusive feature stories on military health care and VA funding and compensation. Our Core Beliefs VetsFirst’s priorities are based on three core principles that will improve the lives of veterans with disabilities. Community Integration and Independence— We support policies that help veterans with disabilities reintegrate into their communities and achieve independence. Timely Access to Quality VA Health Care and Benefits— We support improved access to VA health care and compensation and pension benefits that are the lifeline for many veterans with significant disabilities. Rights of Veterans with Disabilities— We believe that discrimination against disabled veterans that produces barriers to housing, employment, transportation, health care, and other programs and services must be eliminated.

www.vetsfirst.org

CONTENTS Issue 340 - January/February 2022

C O V E R S T O RY

NM’S 2021 PEOPLE OF THE YEAR: THE REALITY POETS 22 A group of current and former residents of Coler Rehabilitation and Nursing Care Center in Roosevelt Island, New York, were recklessly placed close to the epicenter of the COVID19 pandemic. They banded together to hold administrators and elected officials accountable and to share their terrifying experience as wheelchair users in a nursing home where COVID raged inside. SETH MCBRIDE profiles the artists, poets and filmmakers known as the Reality Poets.

Cover and Contents Photos by Nolan Ryan Trowe

F E AT U R E S

14 ANJALI FORBER-PRATT

ELIZABETH FORST profiles Anjali Forber-Pratt, the new director of the National Institute of Disability, Independent Living and Rehabilitation Research.

18 DATE NIGHT PHOTO CONTEST

From beach days to walks in the woods to ball games to elegant dinners, our readers show they know how to keep that flame of romance alive.

33 WHAT TO DO WITH YOUR OLD CHAIR

4 BULLY PULPIT 5 BEHIND THE STORIES 6 SHARE 7 UNITED NEWS 8 POSTS

BOB VOGEL explores what you can do with your old wheelchairs instead of letting them gather dust in your garage.

10 PRODUCTS

36 FROM RUSSIA WITH EMOTION

46 OUTDOOR TRACKS

OKSANA SMITH pulls back the Iron Curtain to reveal what life is like as a wheelchair user in Russia.

42 IN CASE OF FIRE … TAKE STAIRS?

The fire alarm is ringing. The stairs are packed. The elevator is locked down. JOHN BEER talks with emergency experts and wheelers to find out the best course of action.

Photo by Olympia Orlova

D E PA R T M E N T S

12 HOW WE ROLL

48 MEDIA 51 CLASSIFIEDS 52 LAST WORD

BULLY PULPIT By Ian Ruder

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

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

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CIRCULATION CIRCULATION MANAGER: BEVERLY SMITH New Mobility (ISSN 1086-4741) Copyright © 2022 is published bimonthly by United Spinal Association, 6x/year. Business and Editorial Offices: United Spinal Association, 120-34 Queens Blvd., Ste. 320, Kew Gardens, NY 11415. Accounting and Circulation Offices: United Spinal Association, 120-34 Queens Blvd., Ste. 320, Kew Gardens, NY 11415. Call 718803-3782 x7255 to subscribe. Periodicals postage prices paid at Flushing, NY, and Lebanon Junction, KY. Volume 33, Issue 340. Reproduction without permission of any material contained herein is strictly prohibited. We welcome comments; we reserve the right to edit submissions. Subscription rates: $16.95/year; $21.95/year in Canada; $26.95/year International via Airmail.

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NEW MOBILITY

DOUBLE YOUR PLEASURE, DOUBLE YOUR FUN If you’re reading the print edition of this issue and you can’t stop fighting a weird feeling that something is a little different — like there’s a glitch in the matrix — let me put your mind at ease: Something is different. For 25 years, we’ve been publishing issues monthly — this is our first bimonthly issue since 1995. Moving to six print issues a year doesn’t mean we’re cutting the amount of content we will generate. In fact, our plan is to produce more than we did with monthly printing. The difference is we’ll be debuting more of that content online. The result will be a livelier website with more frequent updates with timely articles and bigger print issues filled with original content and the best of the stories that were first published online. This is all part of continuing efforts to modernize New Mobility for the digital age. While many other small-market magazines have come and gone, we’ve stayed alive and rolling, in part because we’ve adapted to the changing times. Our first print issue came out in 1989 when the mere idea of an online version would have been incomprehensible to all but a tech-savvy few. For context, it was that same year an English computer scientist is credited with inventing the World Wide Web. We were relatively early adopters of the newfangled internet when we launched newmobility.com in the ’90s. Looking back on the first archived copy of our site, from November 1996, provides perspective on how much we have changed while also staying true to the core values that continue to make New Mobility a trusted content provider for active wheelchair users. Maybe the site looked more appealing using Netscape 2.0 in the then-recommended 800x600 resolution, but good luck reading in that resolution on your highdefinition monitor or phone. You’ll need even better luck to find a functioning copy of Netscape. Eyesore is the first descriptor that comes to mind today.

The only images on an all-black background are the pixelated bullet points before a bunch of neon green links, a laughable “New” sticker highlighting a few of those links and our logo:

But as dated as the site may be visually, the main text describing New Mobility could have been pulled from our current site. While unsentimental and uncompromising, New Mobility’s voice is practical, knowing and friendly. New Mobility covers people and issues that matter to people with disabilities: medical news and cure research; jobs; benefits; civil rights; sports, recreation and travel; fertility, pregnancy and childcare. And there’s a lot more, too. “Disability isn’t all misery or triumph, pity or admiration,” says New Mobility editor Barry Corbet, an award-winning author and filmmaker and paraplegic for 28 years. “Disability is news, art, politics, humor, healing, recreation, travel, show-biz and rehab-biz, and that’s what we do.” Corbet founded this column, and his eloquence set a bar higher than the tallest seat elevator or most insane transfer could hope to reach. As I was looking through the archives, I stumbled on the May 1996 Bully Pulpit, titled “My Inner Brat.” Like the old version of our site, the layout isn’t much to look at — a bunch of text with a small photo of Corbet in his manual chair. But like all his columns, the writing is exceptional. After a long examination of how he views himself as an aging wheelchair user, he ends with some advice that I hope we will use to guide New Mobility in its next phase: Be who you are. Do it well.

BEHIND THE STORIES With Ian Ruder

COLUMNISTS MAT BARTON • JOSH BASILE SHERI DENKENSOHN-TROTT MIKE FRANZ • REGAN LINTON BROOK MCCALL • TEAL SHERER REVECA TORRES • KARY WRIGHT As soon as I disconnected from one of the Reality Poets’ weekly Zoom meetings last spring, I started brainstorming how we could do justice to their sprawling combination of art, advocacy and community. Months later, I’m thrilled to share Seth Mcbride’s People of the Year story and Deanna Fike’s comprehensive and elegant layout. As Seth points out, what the Reality Poets endured over the last two years will leave you shaking your head. But what stuck with him was how they fought back. “It really speaks to the power of community and the power of telling your own story,” says McBride.

“What the hell am I going to do if there is a fire?” Instead of just pondering the question, John Beer got the firsthand evacuation experience most of us wheelchair users dread (a false alarm, thankfully). We’re lucky that he used that close encounter to fuel a deeper look into best practices for fires and evacuations. His research and interviews opened his eyes and fueled a desire to learn more. “In an emergency, there’s a matter of personal responsibility,” he says. “You’ve got to make sure your ducks are lined up in case the worst happens. Don’t wait for the emergency, be prepared.”

Some readers may know Elizabeth Forst through her delightful blogging for the Christopher & Dana Reeve Foundation, but her profile of Dr. Anjali Forber-Pratt in this issue marks her first time writing for New Mobility. It is also the first profile she’s written. After years of blogging, she found the interviewing and research needed for a profile to be a welcome change. “It has been a great learning experience for me,” she says. “The way I go about my blogging will probably change as a result of what I’ve learned.”

Please send queries, manuscripts or feedback to Ian Ruder: iruder@unitedspinal.org United Spinal’s Resource Center provides information on any aspect of living with SCI/D. Contact: 800/962-9629; unitedspinal.org/ask-us; 120-34 Queens Blvd, Suite 320, Kew Gardens, NY 11415.

CONTRIBUTORS KIM ANDERSON • CHRISTIAAN BAILEY LAWRENCE CARTER-LONG RORY COOPER • DEBORAH DAVIS JENNIFER FRENCH • ALEX GHENIS RICHARD HOLICKY • GARY KARP PAULA LARSON • CORY LEE LILLY LONGSHORE KATE MATELAN • BEN MATTLIN ASHLEY LYN OLSON • KENNY SALVINI ERIC STAMPFLI • MITCH TEPPER ANTHONY TUSLER • KIRK WILLIAMS LOREN WORTHINGTON

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

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

JANUARY/FEBRUARY 2022

“Thanks for the more in-depth story of how these positive changes came about!”

NOVEMBER 2021

The Weird and Wonderful Tokyo Paralympics We’re happy to report good news:

Great interview with Dr. Blauwet — thanks for the more in-depth story of how these positive changes came about! Alicia Dana Newmobility.com

Eric Howk is Rocking the System for Accessible Substance Abuse Recovery

Sad to hear not much has changed: I entered recovery back in

1993 and faced the exact same issues with finding a wheelchair accessible treatment facility. Out of the 30 or so residential facilities in Rhode Island, only one was accessible. I was kind of hoping that things had gotten better but apparently not. Paul Newmobility.com

How do they get away with it?: It’s abysmal here in Arkansas — way back in 2002, I was able to access recovery without needing acute treatment or detox, but many people would die trying to get clean and sober without it. I want to know how treatment and rehab facilities have been able to skirt the ADA all these years. Erin Gildner Facebook

New Design May Let Passengers Fly in Their Wheelchairs Flying would be so nice: Is this

really going to happen? It’s super important to [make planes accessible] for power chair because it would 6

NEW MOBILITY

make life so much easier and more enjoyable! There are many of us in power chairs that wish we could fly to different places but [don’t] because of the difficulty of being transferred in and out and getting your power chair smashed — this would make such a huge difference! I would probably go flying at least twice a month if this was possible. Alex Newmobility.com

Think again: Sorry, but this seems

next to useless. I suspect most active travelers use rigid or folding chairs, not these power chairs. Back to the drawing boards, guys. And come up with something that is universally functional. You can do it if you put your mind to it. Kirk Cunningham Newmobility.com

Quadsplainers, Bully Pulpit

If you don’t have something nice to say: Anyone telling me or implying

that I don’t do enough by myself is like waving a red cape in front of a bull. I have literally ended friendships and relationships over that stuff. Katherine M. Stice Newmobility.com

Six Stylish Adaptive Footwear Options

Shoes are preferable: I appreciate this information, which is useful for so many people. I had surgery on my toes last year and it’s harder to put shoes on now with pins in my toes. They don’t bend and are still tender so don’t like being shoved into small places. As winter gets closer, I’d prefer a shoe to wearing socks

with sandals! I’m going to share this article with my foot doctor as well. Deborah Gregson Newmobility.com

Motherhood and Disability: Dani Izzie and Teal Sherer on Instagram Live

More parenting resources needed:

Finally got to watch this tonight! We can relate to the need for post-partum PT — my wife didn’t get any before being discharged since insurance insisted on outpatient, starting the next week. We went home, she started to transfer into the shower, fell, broke her knee and spent the first month of our daughter’s life back in the hospital. I hope New Mobility can foster a resource for parents with disabilities. We tried back in 1996, in the early days of the interwebs. It was called The Parent Empowerment Network, and we managed to bring together lots of people worldwide (even got some ink in Marie Claire!). Unfortunately, it was just too hard for a couple of working parents to keep it going by ourselves, so it kind of faded away. @jedistig Instagram Watch our Instagram account @newmobilitymag for more stories and IG Live events.

NEWS FROM UNITED SPINAL

UNITED HOSTS POWERFUL NEW DOCUMENTARY AND Q&A ON INJURED VETERANS AND INTIMACY During December, United Spinal’s VetsFirst program provided a week of free access to a new documentary on the intimate lives of injured veterans and their partners and hosted a well-attended virtual Q-and-A discussion about the film. Love After War is a feature-length

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

look at the challenges facing veterans upon returning from service with a disability as they

BENEFITS INCLUDE:

work to restore their sexuality and rebuild their romantic partnerships.

Personalized Advice and Guidance

Hosted by United Spinal Program Director Michele Lee, the Q-and-A included the film’s director, Dr. Mitchell Tepper, and Tyler and Crystal Wilson, one of the couples fea-

Peer Support

tured in the documentary. Tepper is a sexologist who has lived with a spinal cord injury for

Advocacy and Public Policy

nearly 40 years. A veteran and United Spinal member himself, Tepper has long been com-

Veterans Benefits Counseling

mitted to working with fellow veterans with disabilities, and Love After War is the culmination of a project that began 15 years ago. “In 2006, the headlines said failed intimate relationships are the leading cause of suicide in the military,” he said during the Q-and-A. “I wanted to tell a counter narrative, or at least show people who are doing well, as an example for those who are still struggling.” Tyler and Crystal are one of five couples who share their experiences with Tepper in

Accessibility Advocacy Local Chapters New Mobility magazine Informative and Educational

the documentary. Tyler was paralyzed while serving with the U.S. Army’s 173rd Airborne

Publications

Brigade in Afghanistan in 2005. He met Crystal in a handcycle clinic where she worked as

Ongoing Educational Webinars

a recreational therapist. “After being married for five and a half years with two kids, we wanted to do the film to help spread awareness that people with disabilities can still have a loving, healthy relationship,” Crystal said during the Q-and-A. She hopes the documentary helps combat stigma and misunderstandings about disability and intimacy. In addition to misunderstandings, Tepper and the Wilsons pointed to the need to raise awareness about available resources to support veterans and disabled people struggling with intimacy and relationships. More than just a compelling series of profiles, the documentary provides extensive resources to counter this problem. “Most of the resources we found were in the first 20 minutes of Love After War,” said Crystal. “We had no idea about 95% of these resources. Tyler at that point was 13 or 14 years post-injury, and we had zero idea. There had been no one [who provided them] within the VA system.” Discussion attendee Katherine Froehlich-Grobe, a research scientist at Craig Hospital, was one of many who left excited to spread the word about Love After War. “This documentary is amazing,” she said. “I cannot wait to share it with our students because you guys truly get to the raw, important stuff, and what I love about it is, while it’s centered around the notion of sexuality, it’s all about healthy relationships. We can all learn that communication and being vulnerable is so important, for every relationship regardless of disability status.”

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

For more on Love After War or to find out how to view the film, visit loveafterwar.org. For more on disability and sexuality, visit Tepper’s website drmitchelltepper.com. United Spinal’s VetsFirst program is online at vetsfirst.org. JANUARY/FEBRUARY 2022

POSTS

Visionaries, Leaders … Millionaires

LISTEN

Via Instagram @iamweshamilton

Three SCI leaders will start 2022 $1 million richer after being honored as Neilsen Visionary Prize winners by the Craig H. Neilsen Foundation. This year’s Visionary Prize recognized Kim Anderson-Erisman, Wesley Hamilton and Alice Sheppard for their invaluable contributions to the SCI community. All three awardees should be familiar to NM readers. Kim Anderson-Erisman is a researcher at Case Western Reserve Out and About with Chad and Ashlee University and a founding organizer of the North American Spinal Cord Injury Consortium. A wheelchair user for 32 years, her SCI research and Chad Waligura and Ashlee Lundvall launched AbleOutdoors.net to show viewers how accessible expertise have been featured in multiple NM articles, and she regularly the outdoors can be with the right knowledge, submits story ideas. skills and approach. Waligura, a C7 quad, has been Wesley Hamilton is the founder of Disabled But Not Really, a nonhunting, fishing and exploring outside for 35 profit in Kansas City that provides adaptive fitness training and various years, and Lundvall, a T12 paraplegic, has been programs that support and doing the same since being paralyzed in 1999. empower minority communiThe well-produced videos showcase ties. Nationally known for being Waligura and Lundvall’s personalities, knowlfeatured in an episode of Queer edge and passion for all things outdoors. As a Eye for the Straight Guy, Hamilton veteran of the scene, Waligura has long been was most recently in NM as part frustrated with the lack of disability repreof a roundtable on Black Lives sentation and the fact that what exists often Matter. approaches access and disability from a charity Alice Sheppard is an internaangle. “There has been a need for something real tionally recognized dancer and like this in the mainstream outdoors market for choreographer. She founded her years,” says Waligura. own company, Kinetic Light, an The first episodes are available online now, intersectional disability dance and the duo has plans to shoot four more in Wesley Hamilton 2022, along with a dream trip to New Zealand ensemble that “promotes dislooming in 2023. ability as a creative force enabling new understandings of the moving world.” Her show DESCENT was featured in our May 2018 issue. Established in 2020 to honor the memory and legacy SHOUTOUT TO NM READER REBECCA FONSECA of Craig H. Neilsen, the Visionary Prize celebrates influential voices who show great potential to expand or FOR RECOMMENDING THE CRIPPLE THREAT PODadvocate for new ideas for those living with a disability. CAST. FRIENDS TONY AND JAMIE GATHER WEEKLY “All three [awardees] embody the vision of the TO HUMOROUSLY BREAK DOWN REPRESENTANeilsen Foundation and the dreams our founder had TIONS OF DISABILITY IN POPULAR CULTURE, AND to enrich the lives of those affected by SCI,” said Kym THEIR OBVIOUS RAPPORT AND INSIGHT WILL KEEP Eisner, executive director of the Neilsen Foundation. YOU COMING BACK. LISTEN ON SPOTIFY OR APPLE “The Prize is awarded for contributions and the signifiOR AT CRIPPLETHREATPODCAST.COM. cant impact they have already made and their potential to continue to inspire all around them as they do.” 8

NEW MOBILITY

Sexy, Cool, Crippled

Ashlee Lundvall and Chad Waligura host on AbleOutdoors.net.

Alpine Skier Barbie Barbie Para Alpine Skier Doll is Mattel’s latest disabled addition to its most famous product line. The 12-inch posable doll comes just in time for the 2022 Winter Paralympics and includes clothes, outrigger skis, a sit ski and winner’s medal. Available everywhere for $19.99.

Trickshot Golfer Shines in Documentary If you’ve never seen World Golf Hall of Famer Dennis Walters hit three balls with one swing or smash a drive with a floppy club, a new Golf Channel documentary makes it easier to revel in his trick shot mastery. “Get a New Dream!” tells how Walters adjusted his golf dreams after he was paralyzed in a golf cart accident at 24. Instead of playing on the PGA Tour, Walters toured the world with a trained doggie sidekick and an assortment of trick clubs. Over 3,400 shows and countless entertained fans later, Walters is legitimate golf royalty. Narrated by iconic CBS broadcaster Jim Nantz, the document includes testimonies from legends like Jack Nicklaus, Gary Player, Arnold Palmer and Tiger Woods. Read more at bit.ly/3lZMRHZ, or check your local listings for re-airing information.

Pin-ups and knitting pins might not be the first things that come to mind when you think of disabled beauty standards and representation, but a new art exhibit in Garnerville, New York, is hoping to change that. “On Pins and Needles: Accessible Burlesque & the Art of Adornment” showcases a mix of pin-upinspired illustrations highlighting women with a broad spectrum of disabilities and a series of knitted adaptive garments. Illustrator Delilah Blue Flynn and graphic designer and knitter Magdalena Truchan hope “to spotlight and redefine the beauty standard with an exploration of disability, seen through the lens of the aesthetic of mid-20th century pin-up illustration and the capabilities of those we categorize as disabled.” The two artists met through a mutual acquaintance and bonded over their passion for art. Truchan, an L3 paraplegic, shared her frustration over the lack of representation of disabled women in art and popular culture and inspired Flynn to illustrate a colorful pin-up of a striking female wheelchair user. “She presented me this beautiful illustration, and I nearly collapsed,” says Truchan. “I knew it was special and that it needed to be shown.” Flynn supplemented that illustration with 19 more pin-up-inspired creations, depicting women across multiple disabilities. Truchan will showcase eight one-of-a-kind adaptive hand-knit wraps she designed for people with limited mobility. Truchan hopes the exhibit inspires women to reject society’s outdated conceptions of what is considered desirable. “Let’s make disabled women look beautiful and feel sexy,” she says. “It feels great being sexy and dressing up and getting yourself out there. I’m not talking about in a promiscuous way, just something that makes you feel good about yourself.” “On Pins and Needles: Accessible Burlesque & the Art of Adornment” is on display thru Feb. 5 by appointment at the GARNER Arts Center at 55 West Railroad Avenue, Garnerville, New York 10923. Call 845/947-7108, email info@garnerartscenter.org or visit garnerartscenter.org/onpinsandneedles for details.

W AT C H

WHAT HAPPENS WHEN YOU TRY TO

PUT ON THE GREATEST, MOST ACCESSIBLE, YET SIMULTANEOUSLY LEAST COMMERCIALLY-VIABLE COMEDY SHOW FEATURING COMEDIANS WITH DISABILITIES? THAT’S THE PREMISE OF THIS IS SPINAL INJURY, A NEW MOCKUMENTARY FROM THE CO-CREATORS OF THE DISABLED LIST, A SEATTLE-BASED GROUP THAT FEATURES AND HIGHLIGHTS THE WORK OF PEOPLE WITH DISABILITIES, WITH A PARTICULAR FOCUS ON COMEDY. CHECK SPINALINJURYMOVIE.COM FOR DETAILS ON HOW AND WHERE TO WATCH.

JANUARY/FEBRUARY 2022

PRODUCTS By Michael Franz

THE ABILITECH ASSIST The Abilitech Assist is a new wearable orthotic device that enhances natural arm movement for people with upper arm weakness to restore independence in daily tasks. With adjustable springs at the shoulder and elbow, and cables that carry electrical signals to adjust the tension of the springs, the sleevelike Assist is custom fit to the user’s arm. It is supported by a vest that offloads the weight of the device, making it comfortable for the user to wear for extended periods. In addition to the orthotic and the vest, the Abilitech Assist comes with a power pack that includes a rechargeable lithiumion battery and motors that adjust the spring tension. The power pack weighs about 10 pounds, fits in a backpack that can be attached to a wheelchair and can withstand the jostling and jarring of daily life in a wheelchair. The Assist has 10 programmable settings that allow you to adjust the springs to properly assist for different activities and function levels. For example, one program can be set for picking up a toothbrush, while others can be set to

NEW MOBILITY

Erica Gonzales

pick up a cellphone or soda can. The programs can be changed quickly, allowing the user to move from one task to the next efficiently. The programs can also be changed as users’ fatigue levels fluctuate throughout the day or if they get tired while doing an activity. In some cases, users might find that they gain strength through repeated use of the Assist and can complete tasks without the device. However, more research is needed to determine whether repeated use of the Assist can lead to permanent improvements.

Early Results Encouraging

Rob Wudlick, a quadriplegic who was involved in the design of the Assist, wrote about the long process leading up to the product’s release in our June 2020 issue. To learn more, I spoke with Erica Gonzales, one of the Assist’s first users. She sustained an incomplete C1-2 spinal cord injury and traumatic brain injury leading to weakness in all of her limbs. Before using the Assist, Gonzales had great difficulty performing activities of daily living and relied on her mother and her pri-

Gonzales uses the Assist to gain independence. “I can do more with my arms and hands, and I can help with eating a little more,” she says.

mary caregiver to help her throughout the day. After approximately eight weeks using the Assist, Gonzales says she has become more independent in completing many tasks. “I can do more with my arms and hands and I can help with eating a little more,” says Gonzales. She uses the Assist so she can wash her face, brush her teeth and rinse her mouth independently. In addition to these home tasks, Gonzales uses the Assist during her occupational therapy sessions to open doors and relearn how to throw a ball. In the time that Gonzales has used the Assist, she has experienced a great increase in endurance. When she first started using the Assist, she was only able to do so for about 30 minutes and had difficulty completing tasks. Now, she can use it for over an hour and complete tasks without fatiguing. She can even lift light weights with the Assist. “It makes me more independent, and I am getting stronger,” she says. “I would recommend it.” In the two decades I have been injured, it has been remarkable to see the evolution of assistive devices from the awkward weighted pulley system that I used to relearn to feed myself, to a lightweight wearable orthotic that is portable and easy to use. Finding a way to obtain more independence is a priority for many living with a disability and the Abilitech Assist is a valuable tool toward this end. For more information about the Abilitech Assist and to find out if it is appropriate for you visit abilitechmedical.com.

How To Get An Assist

The process of obtaining an Abilitech Assist begins with a video consultation with an Abilitech representative who can help determine whether the Assist is appropriate. After the consultation, the potential user will have an in-person evaluation that lasts about two hours. During the evaluation, the user’s capabilities with and without the Assist are documented. Would-be users need a minimum amount of shoulder and bicep function and the ability to move the joint through 50% of its range of motion with gravity eliminated or be able to hold against resistance in a position without gravity. If the evaluation is successful, the Assist will be ordered and custom-fitted to the individual. The fitting and calibration process takes about an hour. After the final calibration is completed, Abilitech offers support to its customers and clinicians if any problems arise. As with any new medical device, it can be difficult to obtain funding or reimbursement. The Abilitech Assist is listed with the Food and Drug Administration and is eligible for reimbursement from insurance companies. The cost of the Assist depends on the customer’s insurance coverage, or whether they will be paying out of pocket. Abilitech helps customers in the process of collecting documents proving medical necessity and submits those documents to the insurance company. So far, results have been mixed in obtaining reimbursement, but Abilitech is hopeful that insurance companies will be more cooperative in the future. For those paying out of pocket, Abilitech offers payment plans on a case-by-case basis.

JANUARY/FEBRUARY 2022

HOW WE ROLL

“I’m married. I have a 3-year-old daughter now and a home with a mortgage, and I’m very blessed and very happy,” says Kyle Considder

F I NA NCI A L I N V E ST M E N T PROF E S SIONA L

Kyle Considder

While his teenage friends were doing teenage things, Kyle Considder started dabbling in the stock market and quickly realized it could be the road to the fulfilling, independent life he envisioned.

The Wheels of Wall Street Kyle Considder, 44, grew up in Geneva, Florida, as one of four boys riding horses and dirt bikes on a 6-acre property in the country. When he was 13, Considder sustained a C5 incomplete injury in a car accident. His family didn’t have health insurance, and he was fortunate to get his post-acute care covered by Shriners Hospital in Philadelphia. Adjusting to a new city was a lot, but it didn’t necessarily get easier when he went home, as the mobile home he and his family lived in was not entirely accessible. As he thought about all the new obstacles, including health care, accessible housing and vehicles and adapted equipment, he realized one thing united them beyond his disability: money. “If I wanted to live the type of life that I desired, I was going to have to make more than the average individual because it started to occur to me that my life was going to be much more expensive,” says Considder. His road to financial security took off when his younger brother won a computer. “It was the first time we ever had a

FAVORITE OUTDOOR ACTIVITY? I love to hunt and be out in nature. I love getting out before sunrise and listening to the owls hooting while watching the sun come up.

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computer in the house, and it came with a one-year subscription to AOL. About that time, the internet exploded, and online trading became a thing,” says Considder. He started investing as soon as he was old enough to have a trading account. At 16, his first stock was the Philadelphia Suburban Corporation. He bought it because Philadelphia was where he had his surgeries, and the company was one of the largest investor-owned water utilities in America. He purchased two shares at $7 each, eyeing the long-term. Considder turned out to be a bit of a trading whiz. He used some of his investing profits to buy a 15-foot, Glasstream bass boat for $800 so he and his buddies could hang out on the St. Johns River. “We grew up as river rats. We would go fishing, camp out on the banks and get lost in several of the little tributaries that flowed off the river. Thinking back, I’d probably be much wealthier than I am now if I had not liquidated that account, but that boat bought memories that I’ll keep forever. It was never

FAVORITE PIECE OF ADAPTED EQUIPMENT? My track all-terrain wheelchair looks like a tank and literally gets me everywhere in the wilderness I want to go.

Considder This Kyle Considder shares how a family argument that spiraled out of control led to the unique spelling of his last name.

“ understood that would come at a price,” says Considder. He continued to invest until his love of the markets led him to want to see how the industry’s business side worked. After completing his finance degree at the University of Central Florida for free, thanks to state vocational rehabilitation, Considder joined BNY Mellon as an accounting analyst. There he helped accurately calculate values for stock market funds every day. Now, he works at a commission-free stock trading and investing app called Robinhood. The job affords him the financial stability and freedom he always aspired to. “I always try to be an example and let people in my situation know that it’s possible to get out and have the things you want in life,” he says. “I’m married. I have a 3-year-old daughter now and a home with a mortgage, and I’m very blessed and very happy with that.”

MOST ACCESSIBLE PLACE YOU’VE EVER BEEN? Washington, D.C. There was someone there at every train station, and I never was in a situation where the elevators weren’t working.

“

about being rich, it was about the freedom to live life, and I

My original ancestors came from France, and the name was Considér. It was spelled with an accent and one ‘D.’ I always wondered where the second ‘D’ came from. I happened upon a bit of family history that explained it. The reason was, basically, my great-great-greatgrandfather had a disagreement with his brother or his family and decided he did not want to be associated with them anymore, so the way he distanced himself was he added an extra ‘D’ to his name, so that’s where the extra ‘D’ comes from. What spurred me to find this out Considder has worked around stocks and was my unique finances since he was a teenager. last name and my parents having no clue where it came from. I got in touch with a distant relative who, some years back, had done some genealogical research. She’s the one who found it for me. It was written in a diary from one of my great grandfathers.

WHAT DO YOU GET OUT OF YOUR MEMBERSHIP TO UNITED SPINAL? New Mobility. The magazine is a cool way to learn from others in my situation and see what they are up to.

JANUARY/FEBRUARY 2022

The

Adventurer

Leading the Government’s Disability Research B Y

E L I Z A B E T H

F O R S T

Moving to D.C. from Nashville has been a challenging yet exciting transition. Just six months ago, Forber-Pratt was named the new director of the National Institute of Disability, Independent Living and Rehabilitation Research. Housed within the Administration for Community Living, NIDILRR is the federal government’s primary disability research organization. After devoting years to disability research and leadership, she has landed a dream job. But before taking on her new role, she had the daunting task of finding an accessible living situation where she and Kolton would be comfortable. “All I wanted was a place to sleep, shower and do laundry,” she says. “I am someone who has grown up with my disability since I was a baby, and I feel like I’m pretty savvy in navigating these spaces, yet it was still hard even for me.”

Embracing her Identity

Photo courtesy of anjalifp.com

t’s 6 p.m. on a Friday, and Anjali Forber-Pratt takes in the majestic view of the sun setting against the U.S. Capitol Building in Washington, D.C., from her new living room. As she closes her laptop, she feels a slobbery mouth pop up from underneath her desk and settle on her knee. With a soulful look, Kolton, Forber-Pratt’s black lab service dog, reminds her it is the end of their workday and the beginning of playtime. Fresh air and a rooftop dog park full of other furry friends await them. “OK Bubba, let’s go, let’s get out of here!” Wheeling around half-opened packing boxes, Forber-Pratt removes Kolton’s service vest, grabs his favorite squeaky toys, and they head out. It’s been a long week of working remotely and settling in to her new apartment. It’s time to get outside with her bestie. 14

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Forber-Pratt was born in India. She was adopted from an orphanage in Calcutta by a Boston family who brought her to the United States when she was a little over 2 months old. Shortly after her arrival, at just 4 months, she contracted transverse myelitis, an inflammation of the spinal cord, paralyzing her from the waist down. Forber-Pratt grew up using a wheelchair and loved adventuring with her older brother Ian. They played street hockey, built snow forts, crossed the neighborhood creek and went downhill skiing. “I stayed out of the adventures as much as I possibly could to allow for limit stretching in a reasonably safe way,” says Rosalind Forber, Forber-Pratt’s mother. “But one day, when they were about 9 and 5 years old, I looked out from our kitchen window and saw the two of them way up in a large white pine tree. I would guess that they were up about 40 or 45 feet, sitting on a branch and laughing. I realized that there was really nothing I could do to change the fact that they were already up there. I could only breathe deeply and send up a few prayers.” Moments later, the two descended safely, though covered in pine pitch, and Forber-Pratt happily reported back to her mother that she had planned their escapade from the beginning. Learning to embrace her identity as a disabled child, rather than shy away from it, helped mold Forber-Pratt into the woman she is today. She remembers crying in the bushes in preschool when she realized her disability was not going away. “I had this incredible teacher who presented me with the choice of either staying in the bushes crying for the whole rest of my life or coming out from the bushes to learn how to live my life, disability and all. Thankfully I came out of the bushes that day,” she says. Around the same time, Forber-Pratt watched wheel-

chair racers fly by in the Boston Marathon. “I was awestruck. It was the first time I saw individuals with disabilities succeed — it put dreams on the map,” she says. It proved to be a lifechanging experience. Forber-Pratt took up wheelchair racing and competed in high school, college and international events. At the age of 21, she fulfilled her childhood dream and crossed the finish line at the Boston Marathon. But that was not the end. She represented Team USA in the 2008 Beijing and 2012 LonForber-Pratt learned to embrace her don Paralympics and earned identity as a disabled person at a two bronze medals. young age. Forber says participating in sports helped her daughter take risks and advocate for others. “As a teenager, she started promoting sport as a freeing, no-limits activity to other children and teens, many of whom were trapped by their disabled idenAnjali, feeling 1997 tity instead of proudly loving who they were,” says Forber. “This mentoring has taken her all over the world.”

A Scholar Emerges

In addition to achieving greatness in athleticism, ForberPratt is also an accomplished scholar. She earned a bachelor’s in speech and hearing sciences, a master’s in speech language pathology, a doctorate in human resource education, and became an assistant professor of human and organizational development at Vanderbilt University’s Peabody College.

"You never know what's next, you never know when an opportunity is knocking, you never know when a new path may be even more fulfilling and even more rewarding than the path that you previously thought was the direction to go." — Anjali Forber-Pratt While at Vanderbilt, she focused on disability research. “We needed a way to measure this thing called disability identity — that sense of self that you have in terms of a connection to disability,” says Forber-Pratt. She created a research lab on campus and then, with the help of her students, she formulated the Disability Identity Development Scale, an analytic tool now utilized within the research community. In 2013, the White House named her a Champion of Change, and she participated in a roundtable discussion with President Obama about disability policy issues. The same year she was awarded the American Association of People with Disabilities’ Paul G. Hearne Leadership Award, given to emerging leaders within the national disability community. Other accolades include the inaugural Ameri-

A childhood fascination with wheelchair racing led Forber-Pratt to a medal-winning career as a U.S. Paralympian.

JANUARY/FEBRUARY 2022 Photo by Ian Forber-Pratt

can Psychological Association Citizen Psychologist Award for Advancing Disability as a Human Rights and Social Justice Issue Award in 2020 and recognition by Diverse: Issues in Higher Education as a 2018 Emerging Scholar. As Forber-Pratt’s status grew, nonprofits started seeking her expertise in matters such as research grant provisions, strategy planning, analysis and augmentation of various disability programs both nationally and internationally. As a policy adviser for the Christopher and Dana Reeve Foundation's National Paralysis Resource Center, she worked with the organization’s leadership team to improve the quality-of-life grants for the paralysis community. “Anjali has been an agent of change for almost 20 years,” says Maggie Goldberg, president and CEO of CDRF. “Her professional focus on disability identity development provides a unique perspective to her new role at NIDILRR, and she is the ideal person to bring together the aging, disability research and rehabilitation communities within ACL.” Goldberg recalls a few winters ago when Forber-Pratt traveled from Nashville to New Jersey to join CDRF staff for an important two-day strategy meeting. A blizzard dumped almost 3 feet of snow on the tri-state area, stranding the entire crew in a hotel with limited staff and food. “Anjali could not have been more accommodating, focused or fun to be around. She handled it with her trade-

mark smile and grace, and we ended each day with a lot of laughs,” says Goldberg. “Anjali could have seen the weather report and canceled, but she didn’t think twice of it.”

The Path Reveals Itself

Leading NIDILRR provides a perfect opportunity for Forber-Pratt to apply her life experiences and passions. She is responsible for generating new knowledge and promoting the best practices to improve the lives of people with disabilities while pushing for maximum inclusion and integration in all aspects of society. “It’s been a breath of fresh air to be around others with doctoral degrees who are invested in this research,” she says. “It’s been really exciting.” Kristi Hill, deputy director of the NIDILRR, appreciates Forber-Pratt’s excitement. “She brings enthusiasm, disability experience and a fresh perspective that has energized all of ACL, and particularly the NIDILRR team,” says Hill. “Her organizational vision and perspectives on disability will be infused and integrated and have the potential to shape and influence the field for many years.” NIDILRR is responsible for funding research of rehabilitative technologies and ensuring they are practical, useful and readily available for the people who need them. Forber-Pratt knows these advancements are crucial to disabled individuals who want to live independent lives, and she is

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committed to integrating research and improving the field. through all of the ups and downs of life,” she says. “I would “This career trajectory has been about building that plat- have been lost without him, especially during the pandemic. form piece by piece along the way and coming full circle from I feel so lucky and grateful for him in my life.” King Kolton, that 5-year-old seeing the Boston marathon and realizing as she affectionately calls him, is her best friend. you can be disabled and As Forber-Pratt throws a tengo to college, get a job nis ball for Kolton at the rooftop and do all these things,” park, she chitchats with her new she says. “For me, it’s alneighbors about the comings and ways been about making goings of the upcoming weekend. sure I leave the world a She shows the same humble, soft more accessible and inand cheerful presence in her caclusive place for all, and sual conversations that makes her whatever that looks like, so beloved in work and academia. that is what I work toWith darkness looming, she ward every single day.” calls for Kolton to finish up his It’s not all work and playtime. As they head in for no play for Forber-Pratt. A warm personality and sharp intellect have made Forber-Pratt a dinner, Forber-Pratt stops to When she needs to es- favorite with colleagues. take one more look at the beaucape, she explores her new city with Kolton. The two of them tiful view of the city that is now her home. Realizing that have been together for six years. He travels everywhere with every experience in her life has led her to this place, she has her, and his antics, like sneaking into his food bins when a great sense of pride in knowing that she is exactly where she is not looking, keep her on her toes. “He has saved me she is meant to be here and now. There is no doubt this is in many ways in the essence of having that emotional bond her next great adventure.

JANUARY/FEBRUARY 2022

DATE NIGHT PHOTO CONTEST

e asked to see what date night looks like for you and your partner and enjoyed seeing all the ways the two of you celebrate each other. From beach days to walks in the woods to ball games to elegant dinners, you know how to keep that flame of romance alive. Congratulations to the winning couple, and enjoy these photos from other couples who are doing it right.

WINNERS: GABRIELA MENDOZA AND MORIS ALDANA

“New Mobility wanted to know what a date night looks like for us ... some dates we go out and others we stay home watching our favorite shows together. Living as a disabled person in El Salvador, Central America, is not easy, but having a life partner makes it more fluid.”

HONORABLE MENTION: STEFFI AND JORDY GONZALEZ

“From rooftops, to pizza nights, weddings and runways ... we clean up nice.”

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“We love to explore nature and goof off as much as possible — after all, age is a number, but maturity is a choice!” says Daniel Ellman, pictured with his wife, Derin Kenny.

©Paul Anthony Parker

“This is what a #grandslam of a date night looks like! Beautiful night at the park with a beautiful partner!” says Callie Fagg, with husband Christopher Sparrow.

“I met this amazing man in 10th grade Spanish class in 2012,” says Leslie Rogers of her husband, Gunnar. “Our first date was in 2014 at a Starbucks because the ice skating rink was at maximum capacity. Now, every time we go on coffee dates I reminisce about all the adventures we’ve had … graduation, college, jobs, nursing school, major sickness, new fur babies, medical school, marriage in 2021. It hasn’t always been perfect but I wouldn’t trade any of it for the world!” JANUARY/FEBRUARY 2022

DATE NIGHT P H O T O C O N T E S T Jessika and Rey Maiz: “Fishing and Chambulls in the Keys for the win.”

Jake Brockman and his girlfriend, Erica, were surprised by a hot air balloon ride at a wedding reception. “As a C 4,5,6 quadriplegic, my electric chair would not fit in the balloon so I had six strongmen pick me up in my manual chair and set me in the basket. This adventure was a lot of fun and on our bucket list to do one day! We don't let my disability stop us from doing the things we love and want to do together.”

Ryan Nell and Andrea Frisch soak in Wilderness on Wheels, an accessible outdoor paradise in Colorado. “What a few months!“ she says.

Abe Waugh and Maggie Redden: “Throwback to a date day that perfectly sums us up! We're always up for exploring new places with cameras ready to capture our adventures!”

See more entries at newmobility.com/date-night

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“Sometimes a date night for my me and boyfriend is taking a stroll through Chicano Park with our fur baby, Lovey, and connecting with our roots as we watch Danza Azteca,” says Joanie Lopez, with Juan Carlos Lozano.

Jessika Lesley and Dan Michael: “We’ve just celebrated our two-year anniversary, and we couldn’t be more in love with each other. We tell each other our secrets and talk about anything.”

Alejandro Castillo and Tania Sánchez connect at Secrets Huatulco Resort & Spa in Mexico. “I am very lucky because I have the love of a man who loves me and loves what I am, complementing me with everything he is,” she says

Cory Wohlford, the Smithville Missouri High School football coach for 33 years, and Brenda Norton take in a date night game. Coach Wohlford sustained a spinal cord injury in a car accident when he was a college athlete. This year, his 4A Smithville Warriors won the state football championship.

Nathan Davis and Madison Farley: “We played tennis together, and it was Nathan’s first time playing since his accident. It was so much fun to try something new!” JANUARY/FEBRUARY 2022

2021 PEOPLE OF THE YEAR:

THE REALITY POETS BY

SETH

MCBRIDE

Photos by Nolan Ryan Trowe

ne in 10. If you were a resident in a nursing home before the COVID-19 vaccines arrived, you had a one in 10 chance of dying during the pandemic. Despite making up less than 1% of the total U.S. population, people who live in nursing homes accounted for at least 34% of COVID deaths. Those statistics are devastating, but they don’t tell the full story — of the terror, the neglect, the mismanagement and the disregard for their lives — that nursing home residents across the country experienced. At the Coler Rehabilitation and Nursing Fire through dry grass is what I experienced Care Center in New York City, one group of working-age wheelchair users known as the but this grass was never green Reality Poets spent a year locked inside their Or did it ever smell like that fresh cut grass facility, fighting for their lives. Amidst the chaon a summer morning os of their everyday lives, they used every tool at their disposal — from film and poetry, to sothe fire was never visible cial media, political advocacy and public protests — to force reforms and ultimately make but O did it spread like a wildfire Coler a safer place for its residents and staff. And while the immediacy of the pandemic has died down among the public, the Reality Poets – Vincent Pierce, from his poem continue the long fight to raise the voices of our most marginalized communities — black “Fire Through Dry Grass” and brown, immigrant, significantly disabled and low-income. For shining a light from the inside and showing that our “most vulnerable” can also be our community’s most powerful advocates, we are proud to recognize (clockwise from top left) Peter Yearwood, Andres Molina, LeVar Lawrence, Alhassan Abdulfattah, Ramon Cruz, Shannon Nelson, Vincent Pierce, Francene Benjamin and the rest of the Reality Poets as our 2021 People of the Year.

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JANUARY/FEBRUARY 2022

Photo by Nolan Ryan Trowe

I could write about each and every time That I made my mother cry, Or about when I got paralyzed And how I wished I would die. There’s so much pain inside of me That I can express through my pen

The front entrance to Coler nursing home, located on Roosevelt Island in New York City.

Where the fuck do I begin?

t was March 2020 when Andres “Jay” Molina got a new roommate. Staff rolled a sick man into Molina’s room at Coler Rehabilitation and Nursing Care Center on Roosevelt Island in New York City one evening and put him in the next bed over, separated by only a curtain. Molina, a power wheelchair user who has a severe lung condition, diabetes, and heart and kidney problems, had no idea who the individual was or where he’d come from. The man was coughing and continued to cough throughout the night. In the morning, Molina was able to talk to his new roommate. The man told Molina that he had COVID. He also told Molina that he’d been transferred from Elmhurst Hospital in Queens, which at the time was the epicenter of America’s first surge of the COVID outbreak. If you remem-

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– LeVar Lawrence, from his poem “II” ber the news footage of refrigerated trucks parked outside hospitals to stow overflow bodies, Elmhurst was one of those places. Now this sick man from Elmhurst was lying in Molina’s room, in a facility run by the city of New York that housed 500 other residents, many who were elderly or, like Molina, with significant disabilities and various other health complications. Shocked and angry, Molina got on the phone with Coler’s administration. “I told them, ‘How are you going to put a guy with COVID into my room when you know I have underlying conditions?” The administrator told Molina the man didn’t have COVID. “But he’s telling me he does,” Molina replied, anger rising even further.

Sorry, there’s nothing we can do, said the voice on the other end of the phone. Molina hung up. “What they were telling me was, ‘If you survive, you survive. If you die, you die,’” he says. Molina refused to go quietly. He reached out to his friends and fellow residents in Open Doors, an art and social justice collective of wheelchair users who lived or had lived at Coler. The group hadn’t seen each other in person since the pandemic began, as their respective units were locked down, but they met over Zoom regularly. The members who lived in Coler were reluctant to speak out, fearing reprisals from the administration. But it was clear it was time to do something about the increasingly dangerous situation they found themselves in. An aspiring filmmaker, Molina did

the only thing he could think of: He strapped a GoPro to his wheelchair and started filming — documenting the reality of what he and his friends were experiencing from the inside. —— This wheelchair life is not a game ever since I got paralyzed, my life hasn’t been the same But I will never be ashamed to let the whole world know my struggles and pain Life is an adventure, I am an inventor in the midst of chaos, I am calm in my center Coldest than the throes of the winter, yet so warm, I could stove up November – Micah Harris, from his poem “This Wheelchair Life”

OPEN DOORS On sunny summer days a breeze often flows up the East River, cooling the grounds in front of Coler. The facility is housed in a massive brick building that spreads across the northern tip of Roosevelt Island. Most days a group of wheelchair users gathers in the yard overlooking the river and the high-rises of the Upper East Side beyond. They are Black and brown, some are immigrants, and some grew up poor. Many have been to jail, faced addiction or both, and most have been put in wheelchairs by gun violence. They still meet in the yard when the winds turn cold, bundling in puffy jackets and hoodies, stocking caps and winter gloves, so they can enjoy a bit of freedom in a schedule often dictated by the realities of needing care in a chronically understaffed institution. They are at Coler because Coler took them. If you are a young man of color who was shot, has a criminal record or

history of drug use, many other nursing homes in the city don’t want you. Accessible housing lists can take years to work your way through and often aren’t available if you are undocumented or have a felony on your record. Coler and a few similar city-run facilities are where you go, the nursing homes of last resort (see sidebar). Jennilie Brewster would see these men when she started coming to volunteer at Coler in 2014. She lived on Roosevelt Island, was taking a course at the New York Zen Center for Contemplative Care and had been placed at Coler as part of a caregiving assignment. Her unit was for people with nonverbal, cognitive disabilities, and she spent a year there as a companion, reading and playing games and taking residents outside. “There was a younger crowd that hung outside. Frankly, all of them kind of looked good — had cool hats, cool shoes — just hanging out, smoking, listening to music, shooting

WHAT HOMES IF NOT NURSING HOMES? In New York City, people who rely on Medicare/Medicaid and

a real connection to the community. Some would love to live in

don’t have the resources to pay for access modifications or acces-

an apartment on the island, but those apartments hardly exist

sible housing out of pocket can wait years for suitable hous-

anymore. Add to that the problems with self-managing, and pay-

ing. If you are an immigrant who lacks proper documentation,

ing for, sufficient care during a full-blown caregiver crisis. Some

public housing isn’t available. Having a criminal record doesn’t

of the Reality Poets who could live in the community decided

technically disqualify you from getting on a public housing list,

that moving out of Coler isn’t worth the fight. There are a couple

but navigating the byzantine bureaucratic systems, paperwork,

of Reality Poets, Alhassan “El” Abdulfattah and Shannon Nelson,

hearings and appeals it adds can make the process even more

who have found apartments in the city and moved out.

interminable. Many people in these situations wind up in nursing homes like Coler. Many of the Reality Poets fear that if they were to get out of

The disability community often treats nursing homes as a black and white issue: we need people out of nursing homes, now. For many Open Doors members, the more pressing priority

Coler, they will wind up back in the same neighborhoods they

is to improve the conditions for all residents and staff, who are of-

came from, in the middle of the same issues they’ve been trying

ten poor, people of color and immigrants, just like them. As Mo-

to leave behind.

lina said in an interview with disability advocate and author Alice

Roosevelt Island is accessible compared to many neighbor-

Wong when she asked him about abolishing nursing homes: “We

hoods – with wide sidewalks and easy pedestrian access – and in

aren’t advocating for institutions like Coler to be abolished. We

non-pandemic times, the residents have access to it. They have

just want them to be changed, to be more humane.”

JANUARY/FEBRUARY 2022

the shit. And I was like, I want to know these guys,” she says. She eventually introduced herself and started hanging out. As she got to know them, she learned there really weren’t any programs at Coler to help residents move forward with their lives. “I saw it as this cycle of oppression — a lot of them had grown up in public housing, attended underfunded schools, and now they’re back in a city-run institution, and again [there were] no resources being put into their education, creative development or anything.” Brewster asked what they’d like to do, and a few said they’d like to tell their stories, share them with young people growing up in similar neighborhoods, facing similar challenges. In the spring of 2016, Brewster started a writing workshop. It wasn’t an immediate hit. “Hardly anybody came,” she says. “I’d walk around trying to entice them in with snacks.” For the guys, Brewster was still “this white lady who kept coming around,” as Molina once described her to me, and they weren’t sure what a writing workshop was going to do for them. LeVar Lawrence is one of that Peter Yearwood is a writer, poet and organizer for Open Doors. He contracted polio as an infant in Belize and immigrated to the U.S. with his family when he was a child.

original crew. He drives a sip-and-puff power chair and is known to the group as the Vartist because of his talent for digital painting. When I asked him what finally convinced him to start coming to Brewster’s workshops, he doesn’t hesitate. “The snacks,” he says with a quiet chuckle. Eventually guys started showing up, learning how to write essays and poetry. Many residents were hesitant to start attending workshops. “I was terrified of poetry,” says Peter Yearwood, a polio survivor. He didn’t know what to say or how to say it. But Yearwood says Brewster had an inherent trust and confidence in people, and that confidence eventually won him over. “She told me to just write what I feel,” he says. The process of writing, Yearwood says, “helped me to get to know myself. … It put me in touch with my humanity.” The writing workshops continued. The group dubbed itself the Reality Poets and Brewster founded Open Doors, the nonprofit initiative that would coordinate a growing number of the Poets’ programs and projects, in 2016. They started speaking about gun violence prevention at local schools, reciting their poetry for students and telling their stories: the drug use, the crime, the consequences of the decisions they’d made. Many of the guys felt like they had a purpose for the first time since their injuries. When they held school events, it seemed like students were really listening. When the Reality Poets spoke about gun violence and the reality of life on the streets, students’ bullshit sensors didn’t immediately sound. As one student told Molina after a talk at

“What was happening here was happening in nursing homes all over the country.” – Peter Yearwood Photo by Nolan Ryan Trowe

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school on the Lower East Side, “You guys actually lived through it … what you guys talk about is the truth. It’s the way it is.” —— They get to go home We are left to fight this monster It’s like throwing me in a dumpster Close it And walk away – Peter Yearwood, from his poem “Frustration” WE NEED BEDS Even in the early days of the pandemic when little was known about the virus, it was an idea that seemed to defy all medical logic or common sense: COVID patients would be sent to nursing homes to free up beds at the city’s overwhelmed hospitals. And when the city announced the emergency plan that would first bring COVID patients to Coler, it made no mention of nursing homes. On March 16, 2020, New York City Mayor Bill DeBlasio held a news conference in which he announced a variety of measures the city was taking to combat the virus. “The Coler facility on Roosevelt Island, a [NYC Health and Hospitals] facility that was empty. It is immediately being brought back online,” he said. But Coler wasn’t empty. It still operated as the last vestige of Roosevelt Island’s institutional past. The city acquired the island in 1825 and began construction on Blackwell Penitentiary, an infamous prison whose prisoners were used to construct other buildings on the island, including a now derelict smallpox hospital. There was the Municipal Pauper Lunatic Asylum, where inmates from Blackwell once served as staff, the Women’s Lunatic Asylum and workhouses where drunks, prosti-

Photo by Nolan Ryan Trowe

The Reality Poets outside of Coler.

tutes and vagrants were sent to supply labor for various city endeavors. “The island has always been a dumping ground for the city’s undesirables,” says Yearwood, who now works as an organizer for Open Doors. In the 20th century, many of the island’s most notorious institutions were shut down, and the island became the center of New York City’s efforts to create a modern public health system. The city built a nurses training school and nursing homes like Coler and Goldwater, where Yearwood and Lawrence both lived before it was demolished in 2014. By 2020, most of the island was residential. Open Doors quickly published an open letter to the mayor stating that Coler was an active nursing home, and that, for various reasons, bringing COVID patients there was a terrible idea. Yearwood still marvels that they had to tell the mayor there were still people in Coler. He felt like they were having to yell from behind the walls of their nursing home, “Hel-

lo! Us little people are still here!” Eventually the city backtracked, saying that they were creating a new 350-bed hospital on the “Coler campus.” There would be strict separation between the nursing home and the temporary facility. And they weren’t going to be bringing COVID patients into Coler, just non-COVID overflow patients. You can call it bad information, or you can call it outright lies, as many of those who were living in Coler during the early days of the pandemic do. Whatever the reason, the reality in Coler was completely different from the official story. The city did set up a separate medical facility, known as Roosevelt Island Medical Center, but it was in the same building as Coler, and the new facility shared the same entrance, elevators and in some cases, hallways. They heard from nurses that the other facility, at times just a floor away, was treating COVID patients. Then, a few days after the press release,

the city again changed its messaging and confirmed that they were treating COVID patients at the new facility. It didn’t take long before the virus gained a foothold in the nursing home. Once there, it found a field of dry grass waiting to be lit. —— I am the point guard Score 30 pts per game Soon I will be in the hall of fame I am the drummer laying down a beat That is sure to get you on your feet Dream black man. Dream – Peter Yearwood, from his poem “Dreams”

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Poet and music producer Vincent Pierce leads Nursing Home Lives Matter.

“They lied about the death counts. They lied about a lot of things. And we felt like we had to speak up and let people know what was going on.” – Vincent Pierce

Photo by Nolan Ryan Trowe

A COMMUNITY FLOURISHES Open Doors started with writing and poetry, but the organization quickly expanded with new programs and projects. What holds them all together is a mission to encourage creative expression and to amplify the voices of people who don’t often have the opportunity to tell their own stories Vincent Pierce, a soft-spoken man who was shot in the neck during a robbery in 2012, enjoyed writing poems, but his real passion was for music. He wanted to learn production. So Brewster found a local music producer to come in a mentor him, and the organization helped with funding for equipment. In 2019, Pierce produced his first album, Open Doors Reality Poets, Volume I, a mix of spoken word and hip-hop featuring himself and other Reality Poets. That same year, he received a grant from the Center for Cultural Innovation to start a program teaching music production to children who wouldn’t otherwise have the opportunity. The goal, Pierce says is “showing kids from neighborhoods like the one I grew up in that they

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are bigger than what their environments expect them to be.” Open Doors published its first book in 2019, Wheeling & Healing, a poetry anthology. They performed poems from the book to a packed crowd at Bowery Poetry, a longstanding poetry and performing arts in venue in lower Manhattan. They co-wrote and produced a play, Fade, about their own lives, which debuted at a theater on Roosevelt Island. Molina taught himself film editing and animation software. He made a short film about Lawrence visiting the site of his former home, which was now a gleaming new campus for Cornell Tech. He did a few videos for the nursing home. Then, he got a grant to allow him to bring in an experienced filmmaker, Alexis Neophytides — who grew up on Roosevelt Island and won an Emmy for a public television series documenting slices of neighborhood life in New York — to help him make a short documentary about Fade. “It was like magic. Here was this guy from my old community making a film about his new community” says Neophytides. “We hit it off right away.” The projects were vital for their own personal and creative development. Through the work they were doing — visiting local schools, performing at local venues, working with artists and nonprofits from the island, collaborating on arts projects with professors and students at Cornell Tech — they con-

nected with the community on Roosevelt Island in a way they hadn’t before. Prior to Open Doors, Coler’s residents felt like “we were a sore thumb to this island,” says Yearwood. “When they started getting know us, who really lived at Coler, we started bridging that gap between the community and the hospital.” Open Doors started as a gun-violence prevention organization. Though that’s still a component of the organization’s work, now “what we really are focused on is community building,” says Brewster. The connections they made on Roosevelt Island would prove vital once the pandemic hit — they’d need all the help they could get. —— Will I survive through these hard times God only knows what your future holds now if this is being read after my departure just know I fought but my soul I didn’t let the devil capture – Vincent Pierce, from his poem “Will I Survive” WORSE THAN PRISON When COVID came to the nursing home, the Reality Poets heard about it the way they had everything else, through the grapevine of nurses, nurses’ assistants and other residents. “We weren’t getting

Photo by Gary Dean Clarke/@garydeanclarke

any type of information about what their plan was or anything. It’s like no one took the time … they were only worrying about COVID patients brought in from the outside,” says Pierce. Coler was severely understaffed, and the staff they did have lacked proper personal protective equipment. “We’d see a nurse with the same gown and the same mask on for the whole day,” says Molina. “And they treated patients that have COVID with the same gown and mask on in places that didn’t.” The hospital was locked down. “It was hard. They stopped us from seeing our families, stopped us from going out.” says Pierce. Then, the nursing home did something unconscionable — instead of quarantining residents who started showing COVID symptoms, they locked that person’s entire unit down together. As soon as COVID appeared, everyone in a multi-room unit would be shut inside, sometimes dozens of people, waiting for the deadliest virus in modern history to come for them. “Every day we’d wake up, we’d pray,

‘Thank you God for this day, because we don’t know we’re going to have another one,’” says Molina. Yearwood’s unit was one of the last to be locked down. About three days later, he started feeling weird — sweating at night, chills, no appetite. Yearwood was tested, and it came back positive. “It felt like someone had dropped the Empire State Building on me,” he says. “I knew how deadly this thing was … and what was even scarier was them telling you there’s not much they can do.” Yearwood had been estranged from his family ever since a long, dark period of his life when he was addicted to crack. He’d been clean since about 2000, but had lost touch so completely that he could no longer even find a way to contact them. One day a nurse asked him if he’d like to them to inform his family that he had COVID. He declined, there was no one to call. “If I had died in here, I’d just be a John Doe to them, I guess, buried out in Potter’s Field or something,” he says, referring to the cemeteries where people who died unknown and unclaimed would

be buried in unmarked graves. Fortunately, Yearwood’s symptoms never worsened. But Pierce and Lawrence both caught the virus as well. Each had their own brush with death that they were thankful to come out of still breathing. Others were not so lucky. Roy Watson was an older member of the Reality Poets, a recovered alcoholic who was a devout Muslim. “He didn’t really write poems — he’d write more about his life story,” says Molina. Watson didn’t know anything about film editing or have any particular interest in it, but Molina remembers one day pre-pandemic when they spent an entire afternoon in Molina’s room, Watson watching Molina work, asking questions about his process. “It just made me feel like he cared about what I was doing,” Molina says. After Watson got COVID, staff left him with minimal care for a week before they sent him to a hospital. One day, staff rolled him out on a stretcher. Watson died a few days later. “Roy died at the hospital from, they said, COVID and complications of a pressure sore —

Supporters gather outside of Coler at a twilight vigil for lives lost during the pandemic.

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FIRE THROUGH DRY GRASS The documentary Fire Through Dry Grass takes viewers behind the scenes of the devastation experienced by nursing home residents during the onset of the COVID-19 pandemic. Instead of sitting back while their lives were jeopardized by poor policy and half-truths, Coler residents fought back. Co-directed by Coler resident Andres “Jay” Molina and Emmy-winning filmmaker Alex Neophytides, this feature-length film shares the stories of many of the Reality Poets you’ve met in this story and explores the community they’ve built at Coler. The film centers on video footage recorded by Molina and other Reality Poets, and features art, poetry, and music from the group. It’s

from having been left in bed for a week because people didn’t want to move Roy because they were scared of getting the virus,” says Brewster. Nursing aides told Pierce that they’d been directed to leave residents until the last minute because they were preserving the hospital beds for other people. “I was shocked,” says Pierce. The implications were clear: There are people whose lives are worth saving — but you are not one of them. Up until then, the guys who were living at Coler were afraid to speak publicly. But Watson’s death, along with policies that they believed showed a complete disregard for their safety, left the group feeling like they had no choice. “We didn’t give a shit anymore,” says Yearwood.

Photo by Elias Williams

Reality Poets (left to right) Vincent Pierce, Andres Molina, Ramon Cruz, Peter Yearwood and LeVar Lawrence

emblematic of a new style of documentary filmmaking in which the subjects of the film are integral to the process, rather than having their story told by outsiders. The film is supported by ITVS, which funds and presents documentaries on public television, and the producers are working with the impact team for the ground-breaking documentary Crip Camp. The team expects Fire Through Dry Grass to be shown on PBS. For updates and to see a trailer for the film, visit firethroughdrygrass.com.

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—— Separating families killing old, young doesn’t matter who We have something for you It’s called solidarity When our way of life is threatened we all unite To fight the fight – Peter Yearwood, “Message to Corona”

FIGHTING BACK The Reality Poets were ready to fight back, but they realized that talking to Coler’s administration wasn’t going to do anything. Molina’s call had made that clear. Through their weekly planning calls with Brewster and other members and staff of Open Doors, they strategized what was essentially a threepronged attack: documenting and publicizing their conditions inside Coler, connecting with local politicians who could put pressure on New York Health and Hospitals, the city organization that ran Coler, and staging public protests outside the nursing home. Fortunately, the press had already caught onto the story. Mother Jones, the New York Post, NY 1 and ProPublica all published stories that poked holes in the official story and exposed some of the deplorable conditions that residents were subjected to. When COVID first hit, nobody at Open Doors knew any politicians, but, as Yearwood says, “We knew people who knew people.” They tapped the community connections they’d made on Roosevelt Island and found politicians who were willing to hear their stories. Manhattan Borough President Gale Brewer and State Assemblywoman Rebecca Seawright immediately understood the gravity of the situation and began a sustained advocacy effort for Coler’s residents. On April 17, 2020, they sent a letter along with State Senator José Serrano asking the president of NYC Health and Hospitals, Dr. Michael Katz, for clarification on the situation inside Coler. On May 4, with pressure from the press and politicians mounting, the NYC Health Department performed an official inspection of Coler. The report confirmed many cases where COVID-positive patients weren’t separated from patients without the virus. The health department issued a citation that forced Coler to change

some of its policies, mandating better testing procedures and quarantining COVID-positive patients. “I don’t know that the health department would have responded to us at all if we didn’t have the Manhattan borough president and the assembly members breathing down their necks,” says Brewster. As the first wave receded, residents settled into a grim purgatory. The entire facility remained locked down and residents could only go outside into a gated yard at set times, with supervision. Somehow, they couldn’t be trusted to follow the same protective measures, like masking up and social distancing, that staff were expected to. Pre-pandemic, many of the Reality Poets regularly traveled out into the city to visit their families. Pierce had a 12-year-old daughter, and Lawrence had children too. It would be over a year before they were allowed to see them in person. Throughout it all, Molina, who had been working on a documentary about Open Doors, kept filming. Neophytides had stayed in touch when the facility was locked down. When Molina and Brewster floated the idea to her of focusing his film on what was happening inside Coler during the pandemic and invited Neophytides to co-direct, she was all in. “There was never a question of whether or not I was going to do it,” she says. “It just felt really important.” Molina filmed with a GoPro and DSLR while other Reality Poets recorded what they were experiencing on their cell phones. Molina interviewed residents, and the team recorded Open Doors’ Zoom meetings and collected the pieces to tell their own story of the pandemic. Molina and Neophytides began meeting regularly over Zoom. “She would send me a list almost every week — can you film this, can you film that?” says Molina. They would review footage with the film’s editor, and Neophytides would make a new list. As she collaborated with Molina

on the project, her perspective proved invaluable, not only because of her experience with filmmaking, but because she had some distance from the unfolding tragedy. “If it were up to me, I would have just been filming people in their beds almost dying,” Molina says. On Dec. 20, 2020, nine months after residents had first been locked down, Pierce, Molina, Yearwood and a few other Reality Poets rolled into the snowy yard at Coler to protest the conditions inside. Press and a crowd of community supporters were gathered on the other side of a wrought iron fence — the comparisons to a prison were unmistakable. The men and supporters in the crowd held signs emblazoned with Nursing

Homes Lives Matter, a protest movement that Pierce had started over the summer after seeing the racial justice protests in the wake of George Floyd’s killing and drawing parallels with their own struggles at Coler. Reporters stuck long microphones through the bars to ask the men questions. They talked about the isolation, the lies, the disregard for their lives. They demanded change. If decisions were being made that affected them, they want a seat at the table. They wanted this change not only for themselves, but for residents of nursing homes across the county. As Pierce said after that first protest, “This is only the beginning.”

Now I’m praying to God that he saves my life So I can be around to watch my kids grow And teach my sons things about the streets that they don’t know

LeVar Lawrence is known to the group as the “Vartist.”

To make sure that my daughters don’t end up with the wrong man Let them know what they’re worth and that they need a ring on their hand Well, remember me God? The one that got shot in the Head? I’ve changed my mind Because what use am I to my kids if I was dead – LeVar Lawrence, from his poem “Change of Heart”

Photo by Nolan Ryan Trowe

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The mural behind Open Doors founder Jennilie Brewster, in FDR Park on Roosevelt Island, is modeled on Vincent Pierce’s quad hand. United Spinal Association’s Accessibility Consulting Services helped ensure a major remodel of the park was accessible. Previously, the park celebrating the only wheelchair-using president wasn’t wheelchair accessible.

—— At that moment he spoke and said, “You’re special to me. I have more in store for you Just wait you’ll see.” I told him that I didn’t want to hear that shit Unless he’s giving me the ability to walk He said, “My child, I just gave you back the ability to talk!” – LeVar Lawrence, from his poem “Something About Me” RISING FROM THE ASHES For the Reality Poets, like the rest of the world, this pandemic has no happy ending. So far, it has no ending at all. In January 2021, not long after the Nursing Home Lives Matter protest, Pierce spent weeks on the observation side of the quarantine wing set up at Coler because his roommate tested positive for COVID. Things slowly got better when the vaccine came. Starting in March they could finally go outside and see their families. They could hang out front of the building and feel the breeze blowing up the river. They’d successfully helped force changes at Coler — testing and separation of COVID patients,

increased scrutiny of PPE supply and practices — that made the facility safer for both residents and staff. They no longer woke up every day feeling like they’d been thrown in a lion’s den. They could focus on the hard work of sustaining their efforts now that the fire, and the energy and attention it brought, had calmed to a smolder. Pierce continues to lead Nursing Home Lives Matter, which held a public vigil for the lives lost in Coler in the spring of 2021. That summer he spoke at a virtual roundtable that brought nursing home staff and residents together to build solidarity for their parallel fights for better working and living conditions. Molina continues the multi-year effort to produce their feature documentary, Fire Through Dry Grass. It recently received funding and support from ITVS, a primary funding organization for public television projects, and they’ve started working with the impact team for the awardwinning documentary Crip Camp, trying to build momentum for the film’s release. In the past year, Open Doors expanded both its staff and its members. They continue their quest for creative expression, amplifying the voices of those who don’t often have the opportunity to tell their own stories. To that end, they launched a new project, Pandemic Island, in June 2021. They’re collecting and archiving stories and art from people who lived and worked through the pandemic on Roosevelt

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HELP LEAVING A NURSING FACILITY If you live in a nursing facility and would like to live in the community instead, the best place to start is usually your local Center for Independent Living. There are over 400 CILs in the United States. Helping people leave nursing facilities and other institutions is a core service of all CILs. Find your local CIL at ilru.org/projects/cil-net/ cil-center-and-association-directory. Additionally, you can contact United Spinal’s Resource Center. “We can point you to state and local resources that are available, as well as connect you with a local United Spinal chapter in your area, as they may be able to provide additional support to help you transition out of a nursing home,” says community advocacy manager Jose Hernandez, a C5 quad who lives in New York City. Visit unitedspinal. org/ask-us or call 800/962-9629.

Vincent Pierce and Peter Yearwood protest from behind a locked gate at Coler during a December 2020 Nursing Home Lives Matter Protest.

Photo by Gary Dean Clarke/@garydeanclarke

Island. “It’s so important that we do this and we do it now, while the memories are still fresh in people’s minds and we can get the stories from the people who actually lived through these experiences,” Yearwood says. As Open Doors grows, they seem to always circle back to the structure of the writing workshops where their work began: Take your turn to speak, then be there for the next person. They have truths to tell too.

I What To Do With Your Used Wheelchair

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f you’ve used a wheelchair for more than a few years, there’s a good chance you have an old manual or power wheelchair, maybe multiple, cluttering your garage, spare room or storage shed. Many of these chairs are in good condition and could be an upgrade for someone who doesn’t have a decent chair because of financial issues or because they need one right now, not in the six to 12 months it takes to navigate the system to get one. I set out to see what options and resources exist to ensure that potentially useful chairs find new homes with people in need and not end up in landfills. Here is a look at places you can donate or sell a used chair to or find a used chair at no or low cost, and what to do with a chair that’s too well-used to save.

Selling Your Used Power Chair

There are a lot of used power chairs in excellent condition because of minimal use. Often this is because, unfortunately, the power chair user died or went into a care home, says Alex Vander Pool of Marc’s Mobility, a Lakeland, Florida, company that buys and sells used power chairs. “We currently have about 300 units ranging from scooters to high-end power chairs, so we only buy chairs in excellent condition,” he adds. “A power chair used daily for five years is generally worn beyond resale,” says Randy Brayman of Timeless Mobility, a Highland, Michigan, company that resells lightly-used DME ranging from scooters to high-end power chairs. “I only sell equipment that is in great condition. If a chair is too worn to resell, meaning the condition is less than a 7 out of 10, I’ll pay the person a small fee of $100, take it for parts that can be used to fix another chair, and sell the nonusable parts and batteries for scrap,” he says. Brayman’s pricing formula for purchasing a used

Buying a Used Chair

If you’re looking for a used power chair, check out Marc’s Mobility and Timeless Mobility’s websites. They both show the chairs they have in stock. Marc’s Mobility also has a YouTube channel with close to 2,000 videos of the chairs for sale. • Marc’s Mobility, marcsmobility.com/ used-power-chairs-options.html • Timeless Mobility, timelessmobility.com

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wheelchair in excellent condition is to buy it for 50% of the price that Timeless Mobility will sell it for, which is generally one-tenth of the new retail price. “Let’s say we have a power chair that retails for $30,000 in pristine condition. I will resell it for around $3,000. For purchase, I pay the customer about 50% of the price I sell it for, so on a $30,000 chair, I would pay around $1,500 and sell it for $3,000.”

Selling Your Used Manual Chair

I could not find any large-scale commercial operations that purchase and resell used manual wheelchairs. Since manual chair frames tend to last, especially rigid/non-folding ones, they can be fixed up by replacing worn components like wheels, casters, bearings and wheel locks. Parts like these can be found for reasonable prices at online DME sites, including Sportaid and Living Spinal. When it comes to pricing a used manual chair, Dave Moore, who used to run a business that sold demo chairs, offers this formula, “You start at 20% of MSRP for a used chair in mint condition and then lower the price depending on wear and tear. Hence, a used manual chair isn’t worth much to the seller but is priceless for the person that needs it, especially when it is a correct size and fit.” Disability product Facebook groups are good places to list a manual or power chair for sale (see resources). Other online sites to list and look for used chairs include Facebook Marketplace, eBay and Craigslist. Be warned — online used chair price listings tend to be all over the board as it can be difficult for potential sellers to grasp how quickly wheelchair values depreciate.

Make Your Old Chair A Beach Chair

With a Wheeleez All-Terrain/Beach Conversion Kit, you can turn that old folding chair gathering dust in your attic into a beach cruiser that’ll let you traverse the local dunes and catch some rays. The kits come with three low-pressure balloon wheels and a front and rear chassis made from aluminum. With mounting hardware and easy installation instructions, you don’t have to be handy to convert your chair. Kits start at $679 and range to $899 depending on rear wheel size and capacity. You can watch the conversion process here: youtube.com/watch?v=VbDX0MPq7Qw

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Donating Or Getting Used Chairs At No Cost

Donating your chair to a nonprofit comes with the double bonus of knowing it will likely help someone in need and getting a tax write-off for yourself. One example is the ALS Association, which accepts used DME in good condition at all locations. They have a “durable medical equipment loan program” that provides donated assistive technology ranging from shower chairs and cushions to manual and power chairs for people with ALS. “Because ALS is a progressive condition with a prognosis of two to five years, somebody with ALS doesn’t have time to go through the red tape of getting assistive technology,” says Amy Sugimodo of the Sacramento Chapter ALS Association. Although anybody can donate, only people with ALS are eligible to borrow the equipment. “We have never had to turn away anyone with ALS for any requested DME. They can come down to our chapter, and we work with a nurse or ATP to [properly fit them].” The Triumph Foundation, located in Southern California, gets top marks as a place to donate manual and power chairs. They take the wheelchairs to their warehouse and fix them up, including adding fresh batteries to power chairs. It’s also an excellent place for those who can’t afford a used chair. “Being able to provide a refurbished chair that is the right chair with the right fit is especially important for somebody with a new injury,” says Andrew Skinner, the organization’s founder. “They are often released from the hospital with the wrong type of chair or a chair that doesn’t fit.” The Triumph Foundation maintains a list of who has what type and size of chair. “If we match a person donating a power chair in another part of the country with somebody in need of a power chair, we have grants for new batteries,” says Skinner. Another great place to donate a chair or find DME at no

What to Do With a Dead Chair What can you do with a wheelchair that is at the end of its life and not worth donating? Former reseller Dave Moore suggests asking a scrap metal recycling center in your area to refer you to a metal scrapper, as they will usually be happy to take the chair off your hands. “This is especially true for power chairs because of the recycling value in the copper and other metals in the chair, plus core values for batteries,” he says. “Where I live, a set of used group 24 batteries fetches $20 for the core value.” Scrapping your old chair puts a little money in your pocket while ensuring that some of the materials are repurposed instead of winding up in the landfill.

cost is through one of the Centers for Independent Living in your state. Many CILs accept wheelchairs and other DME that is still in good condition. They’ll typically clean, repair and make it available for people with disabilities for free or minimal cost. “If your local CIL doesn’t repurpose DME, it can steer you to an organization that does,” says Ana Acton,

Deputy of California Department of Rehabilitation. Your local United Spinal Chapter or SCI support group are other places to check for donating used wheelchairs and DME. Some, like San Francisco Bay Area’s NorCal SCI, maintain a durable equipment closet of donated equipment that is matched with those who need it.

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Resources • Disability Equipment - Buy/Sell/Trade, facebook.com/groups/394223841091221 • Disability Trading Zone, facebook.com/ groups/DISABILITYTRADINGZONE • NorCal SCI DME Equipment Closet, norcalsci.org/equipment-list • Triumph Foundation, triumph-foundation.org • Wheeleez, wheeleez.com

Power Chair Resellers • Marc’s Mobility, marcsmobility.com/usedpower-chairs-options.html • Timeless Mobility, timelessmobility.com

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Life, Love, Death & Disability in Russia B Y

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W Artist and actor Oksana Smith lived in Moscow, Russia, with her parents, until they succumbed to COVID. Following is her story of the intersections between disability — she has significant cerebral palsy — illness, death and, ultimately, freedom in a nation that refuses to fully acknowledge any of these things.

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hen my father fell ill, I did not understand the full consequences at first. I called for him from my room again and again. He sat in the kitchen and muttered endlessly, as though engaged in conversations with those no longer of this world. He could not get up from his chair. It was late at night, and I did not know yet that my life had collapsed. Mother woke up. She herself is seriously ill and she falls asleep all hours of the day. She measured father’s temperature — 102. I sat in my wheelchair all night long. Mother found the strength to pull father to bed, although he had lost all sense of space and was barely conscious. She did not have enough strength left to lift me into bed. It was already a bright morning on May 22 when the ambulance arrived. The medical personnel separated me from my wheelchair backrest and slipped the hoist holders under me so that mother could raise me up. Mother pushed my wheelchair aside and began to settle me into bed when we heard father’s quiet footsteps. He appeared in the frame of the door, illuminated by a ray of morning sun passing through the window. As if nothing had happened at all, he hurried forward to give mother a hand. Unbutton, lift, extricate, pull, wash, and tuck me in. His smile was filled with sunshine. It was the last time I saw my father alive. I lay in bed, and my head felt like it would explode. Through the haze of pain, I heard voices and steps. Someone walked heavily down the corridor and a loud, piercing woman’s voice — presumably directed at father — spoke as if to a 3-year-old.

On Being Disabled in Russia By Oksana Smith | Translated by John Freedman

y American editor asked me to write an article about the general situation of disabled people in Russia. I’d like to answer with a single phrase: “It sucks!” But I’m afraid that such a laconic answer would not satisfy him, and so let me hasten to provide some details. I’ll begin at the beginning. As a Soviet representative said when asked in 1980 if the USSR would participate in the first-ever Paralympics, “There are no invalids in the USSR.” As such, I did not officially exist until my 12th birthday. A strange child lay on the bed waiting for mom or dad to come home from work. Sometimes this child was placed in an extremely uncomfortable baby carriage, because at the end of the 1980s not a soul in Russia had ever seen a wheelchair for children. This child was sent to a regular public school, and not to a correctional school, thanks purely to the heroic efforts of my mother. Even then I was only able to begin school when I was 10. The fact that this child had, since the age of 8, known how to type and had written novels set in Paris was of no interest to anyone. Such is a short historical sketch of my childhood. After the breakup of the USSR, an event over which many of my fellow countrymen still weep and moan, the situation slowly began to improve. The 1990s were difficult, but full of change. Yes, people lived in poverty. Some lost their jobs and, rather like infants being separated from the warmth of their mothers, gave in to despair and depression. But when the wave of lies about a totally healthy and happy society began receding, the realities of life came to light. And it turned out that there are all kinds of different people, and that, among them, are people with disabilities. It also turned out that just because a person could not walk or talk didn’t mean they couldn’t earn a salary. In the first two years of the “New Russia” I was transformed from a mumbling, unintelligible teenager into an advertising agent who supported her family. I was 15 years old. I sent out advertisements by fax. For me this was nothing short of a miracle! My parents could not believe that their helpless, hunched-over daughter earned enough with her first paycheck to buy a television. In time, people slowly began to realize that there were individuals with disabilities around them. Pensions were provided, as was the right to spend vacations in special institutions out in the countryside. In the middle of the 1990s, I found myself in a theater group working with the intellectually disabled. It was a rather funny situation. Someone, apparently not realizing my intelligence, invited my parents and me to a rehearsal in this theater where nondisabled actors performed alongside people with Down syndrome.

My connection with that theater emerged as one of the most important events in my life. It put me on the path toward creativity, summoning to the surface latent, long-forgotten interests in writing and drawing. Later, when this theater completed its project with the intellectually disabled actors, I joined the troupe. But that is a whole other story entirely.

The Fruitless Seed of Freedom The last decade of the 20th century in Russia brought not only poverty, but also a new sense of freedom. However, no one understood that physical freedom is bound up in another, much more important kind of freedom. No one understood that in addition to delicious foreign products, beautiful clothes and a luxurious lifestyle, there were other such things as rights under the law, and a respect for otherness. Falling on dry ground, the seed of freedom did not give fruit. While I was a teenager, my mother spent prodigious amounts of energy advocating for disabled persons. She was an aide to a member of the Russian parliament, and her work brought about the adoption of numerous useful and necessary laws, decrees and by-laws. But by the beginning of the new century, many yearned for a return to the Soviet Union. Slowly, but with the tenacity of the stricken Titanic, the big ship Russia began spiraling to its death, twisting round and sending up a massive spray of historical failures. Little by little, the new undertakings began falling by the wayside. My mother’s laws were repealed one by one, and she began receiving suggestions and threats. What kind of suggestions, you ask? Quite simple. One might be a suggestion to join the nomenklatura — a pool of people to fill government posts — glorifying the new powers-that-be. If she did so, select disabled people might be allowed to organize sewing courses, poetry clubs, or attend stuffed toy circles. But they would not be allowed to change anything of substance in the country. Or she could refuse. And then her organization would receive no funding, no benefits, nor places in which to meet. Mother refused. She refused because she had a conscience and a clear understanding that neither I nor anyone else with disabilities would have a place in such a token system. It was beneath her human dignity to be a cheerful screen for inhuman power structures. I participated only indirectly in these events. All my thoughts were occupied by my creative work, although I deeply supported my mother. Time has shown that she was right.

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Tears burst from my eyes. I wanted to call out to father, but I knew it was pointless now. My body went numb. My thoughts raced back and forth from my father to my mother, and then to my awkward physical position. What will happen to us all now? Pain, panic, despair.

An Ending

When I learned I had COVID, I was terrified, imagining myself lying on my stomach and wheezing through infected lungs. Nothing of the sort happened. My COVID covered me with a damp, thick blanket, dulling all my senses. Basically, it was like the common flu, only with severe headaches and the absolute loss of taste. Eating

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was strange. I could discern only what was salty or sweet. Sometimes, as if from afar, I might get a whiff of coffee. It was the same with the other senses. I perceived what was happening as if I were many kilometers away from my body. My father’s ghostly voice on the telephone did not seem to reach me at all. But, for all of this, I remained quite collected. I had problems to solve, for my mother no longer had the strength to take them on. Someone — not I — shouts into a smartphone left on my pillow, “Father, father, send me Farzona’s phone number, please!” Silence. Mumbling. A short, “got it,” followed by a click. Father never sent me our cleaning assistant's phone number, and I had to find her on Facebook, half hanging in

my hoist, half sitting in my wheelchair. I have always been shy about my naked body, trusting it only to family members, but now I didn’t care who dressed or fed me. It didn’t matter. Survival was the thing. As long as the deliberate, eternally late Farzona came and lifted me into life. Meanwhile, death lurked close by. No. I had no premonitions about father. I had no dreams, saw no mysterious clouds swirling in the middle of the room. Death simply came one evening with a shopping bag and sank wearily into a chair near the kitchen table. We didn't even notice it, Farzona and I, as we chatted about trifles and looked at fashionable handbags on her Instagram. By that time, my illness had almost receded, and I thought

My COVID covered me with a damp, thick blanket, dulling all my senses. Basically, it was like the common flu, only with severe headaches and the absolute loss of taste. Eating was strange. I could discern only what was salty or sweet. Sometimes, as if from afar, I might get a whiff of coffee. It was the same with the other senses. I perceived what was happening as if I were many kilometers away from my body.

the worst was over. My friends’ voices had brought me back to myself. Their concern for me made my heart beat properly in place. How wrong I was to think that. On this evening we could not wake my mother. Fate apparently was preparing her for the most terrible event in her life, plunging her into either sleep or oblivion. I did not hear the phone ringing in her frozen hands. Still weak from illness, I fell to sleep, lulled by the smell of incense that seemed to reach me from afar, although Farzona had placed the burner next to me, on the windowsill. When mother entered my room the next morning, she looked like a ghost. It seemed there was no longer a body inside her white, terry cloth robe. “Your father is gone.”

I buried myself in my pillow and a heavy, almost bestial cry leapt from my chest. Grief filled every cell of my body. That morning flashed before my eyes, as did his bright, smiling face. Where now has this smile gone, where are those blue eyes? Death transformed this light into crystal beads and wove them into an infinitely long necklace. Death loves decoration. Farzona was late again, and my mother, overcoming her pain, put me in the scratchy net of the hoist to bathe me. I remember how I sat, bathed and clean for some unknown reason, and listened to the sobs of Farzona, who had finally arrived, out in the corridor. “The poor, poor man!”

The Beauty of Eternity

In all the 42 years of my life, I had never seen a dead body. When my grandparents died, I was not taken to their funerals. As a child, I was protected from that. Now it was different. I had to choose a coffin for my father. His last earthly refuge. My tears ended on the second day. I lived strictly in the moment. On the day of the funeral, I felt terribly sick. We descended the ramp at our entryway and the driver of a wheelchair taxi hurried up to us. For some reason, he tried to persuade me to switch into another wheelchair. Confusedly, we explained that I cannot sit in any other wheelchair. After a short back-andforth, I was lifted on the hoist. The sunny summer day looked gray through the cloudy glass. I stared indifferently at the children playing in the playground. A wall of grief separated me from the laughing world. And when I turned my head, I saw my mother being led forward, her arms propped up by other arms. She was holding on with the last bit of strength, my poor mother.

A lump of sickening weakness rose in my throat as the door slammed shut. We were in a hurry. As always, someone had told someone the wrong time, and someone else had forgotten to warn still some other person. As a result, the wheelchair taxi was an hour late. We hurried as if father were waiting for us somewhere alive. And when we arrived, he would greet us and offer us tea, black bread and bacon. Finally, we arrived and were greeted by friends. Everyone nodded sadly from a distance. Solemnly we ascended a small ramp and entered the hall where a coffin already lay beside a lectern. I didn’t see father. The coffin stood high on a pedestal, and I felt sad. Suddenly I saw someone in black approaching me. Two people picked up my wheelchair as if it were a feather and I see ... … a calm face, possessed of the beauty of eternity. I soar. I feel sick no longer. A strange, quiet joy overtakes me. “It’s all right, kid,” a memory of father’s voice drifts to me. “This is life.”

The Soul is Greater than Any Carcass

When I was an actor in the mid-1990s, my beloved director Boris Yukhananov walked past me and composed a poem. It was long and very funny, but now I only remember the first line about the soul and the carcass — dushá and túsha in Russian. Every time my body has distressed or been a burden to me, I remember that poem and smile. Somebody asked me recently what it’s like to be me. What comes to mind is the phrase “immobile mobility.” My mind is mobile and free. It flies where it pleases. It topples unjust governments, and it battles evil. My body, however, is immobile. Only a few impulses pass through my brain. Right now, my hand reached to the side, traced an arc, then fell on my pillow.

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I have nightmares about not being able to get out of bed. For many nondisabled, busy people, a bed is a longed-for oasis with its soft clouds of blankets and comfy islands of pillows. It’s never been like that for me. The burning desire to do something has always been so great in me that, even when I was a young child, nobody could ever put me to bed for naps during the day.

The pillow cools my hand and I doze off into a momentary dream. But I jar awake and instantly remember that my father has died, I have a splitting headache, and the worst nightmare of my life is coming true. I have nightmares about not being able to get out of bed. For many nondisabled, busy people, a bed is a longed-for oasis with its soft clouds of blankets and comfy islands of pillows. It’s never been like that for me. The burning desire to do something has always been so great in me that, even when I was a young child, nobody could ever put me to bed for naps during the day. I hate being trapped in a bed. I look around at things and begin to think they are as rational and full of spirit as me. I wonder, what political beliefs does this imposing wardrobe hold? And who is this staid lamp in love with now? Am I delirious? The minutes slog by so slowly I wonder if someone dunked them in honey. Hope thrash-

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es around my brain as a fly might against a window. Don’t lose heart! Someone will come soon and sit me up, and my life will take its course anew. I lose myself in thought again. They are somber thoughts. In Russia, unfortunately, people with disabilities are made even more helpless than we really are. Then the same people who do that to us complain about our helplessness and how we have no prospects for the future. Now, who can have prospects when the state only cares for its people for show? I have observed that the more oppressive a state is, the more it persecutes all the possible minorities, and the more hostile it is to those with disabilities. However, do what you may, time surges forward, constantly posing new questions that we must answer. What is a human body? And the soul? Perhaps our soul is our individuality, the essence that makes us unique. However, I’ll think about that later, for I just heard the door squeak, and mother has entered the room. In a few minutes I, the power of love, and the hoist will lift me up.

Life and Freedom

Now I am on my own. My mother, unable to bear the heavy loss of my father, followed him into death. But what about me? I embarked on an unexpected, unknown and completely new life. I was not taught how to take care of a house. Unfortunately, I was indoctrinated with fear that, were I to remain alone, I would not survive more than a few months because the iron

hand of the state would seize me immediately and throw me into some reeking Soviet-style asylum. There, no doubt, I would be killed because I have great difficulties speaking. Did I believe that fear? Yes. In part. But as I matured, down deep inside of me, I don’t know where from, an understanding grew and strengthened that I was not all that helpless. Now, I have learned to tighten my inner strengths into a fist. I have also learned to listen to no one. I usually smile at all the advice I receive, but I do whatever I think needs doing. This isn’t stubbornness. More likely it is tenacity. I’m fortunate, for now, for the people who surround me. I’m fortunate that circumstances allow me to remain in our home after my mother’s

death. I believe the time will come when my home, recovered from the grief that shook it, will shine brightly. Oh, my poor home! For over a year it was as sick as its inhabitants. It was sick with never-ending disorder and disrepair, its walls swollen with dust. My grandmother's favorite vase gazed with displeasure at the broken faucet, and it, in turn, stared stupidly at a long-forgotten stuffed toy. The house and all that was in it kept watch as my poor mother, descending into delirium, raved and tossed about on a mattress laid on an endless number of boxes. I sat next to her, and it seemed that the story of my father’s illness one and a half months ago repeated itself. Again unconsciousness, again delirium and again a bright ray of sunlight. Only this time it was not the morning sun that blessed and soothed us, but a furious, hot ray of sun that parched every living thing and obliterated coolness. It shone on my mother's face, making her rave and toss about even more. But this time, something had changed. I was no longer alone. In some incredible way, these terrible events Oksana Smith née Velikolug was born in the southern brought me closer both to Russian city of Rostov-on-Don with spastic quadriplegic friends and to people I had cerebral palsy. A chance 1996 meeting with the famed dinot known before. While rector, writer and educator Boris Yukhananov led to Smith my father was alive, I lived joining his troupe. In 2001 Smith published a book about in a bubble that was now her experiences studying with Yukhananov, Our Theater: A True Story and in 2004 she was a star performer and writer shattered. My soul was exin the production, The Tale of an Upright Man. In 2010 she posed to all winds. These married a citizen of New Zealand, hence her very unRussian winds carried it away last name of Smith. A computer artist, Smith sells her work from an illusory, halfonline via Facebook. In 2019 she mounted a solo exhibit of childish existence into the her paintings, "The Life in Me," in Moscow. real world.

JANUARY/FEBRUARY 2022

WHAT GOES UP

MUST COME DOWN

ife can go from 0 to 60 in just a moment. It was the sleepy hour after lunch. We were completing an OT session at TIRR Memorial Hermann, a research and rehabilitation hospital in The Woodlands, Texas. My OT and I had spent a productive session figuring out voice recognition apps, but I was drifting and daydreaming about a three-alarm burrito on the way home. That’s when the white emergency light overhead started flashing. A voice on the PA told us to head to the stairways. Do not use elevators. Staff will help those who need assistance. My therapist looked across the room to a physical therapy assistant who had us laughing for the last hour with his clever quips and dad jokes. “There’s my emergency guy,” she said. Dad jokes’ name was Matthew Haynes, the unit’s designated safety officer who trains and runs yearly emergency By training for all staffers. “This is Jo hn not a drill,” he said. “Let’s start Be moving to the exit.” There was er no dad joke in his voice. A dozen or so people in the room heard his announcement, as did many more spread around the rest of the floor. Some, like me, had mobility issues or other disabilities. The stairways stacked up with people. A bunch of us waited in the hall for a few long minutes, quiet and tense, not freaking out but not saying a word. In my power chair, I was near the back of the pack. There was no point in jumping to conclusions, but as we waited, we couldn’t help but wonder what was on the other side of the steel door or on the other floors. Over my shoulder Haynes said, “We’ll have to transfer you to a lighter push chair or to the Med Sled. Which do you prefer?” How do you answer that? And what’s a Med Sled? It didn’t seem like a good time to play 20 questions, so I said, “Whatever you think is best.” “OK,” he said. “We’ll have to go back.” I u-turned in the crowded hallway and we backtracked to the gym, in the direction opposite the exit. Haynes’ expertise was apparent, as he calmly gave my therapist and another rehab technician instructions and answered questions.

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For once I was able to describe where all my belts, hoses, wires and straps were located, without stumbling over my tongue. My wife says I give terrible directions, but perhaps emergencies can focus you, and I was picking up on the laserlike vibe of medical professionals. I reclined my chair to lie flat. They folded my arms over my chest and flipped back the wheelchair armrests. Then they lifted me onto the Med Sled emergency evacuation device. It is a sling formed of a sheet of high-density plastic that can be easily rolled up and stored in a bag. Haynes explained to me later that when you unroll it, you get a contour shape that curls in at the sides to keep in oxygen tanks, wound VACs, or my arms and medical bag. They secured my head on a pillow. My therapist and the rehab tech each grabbed a long strap at my feet to pull me along. One of the things I miss since be-

“I was daydreaming about a three-alarm burrito on the way home, when the white emergency light overhead started flashing.” ing in a wheelchair is tobogganing. Many times I’ve thought, wouldn’t it be cool to go one more time? But I never guessed that toboggan ride would happen at a medical center. No one could see the glee behind my mask. Of course, I followed the decorum and seriousness of the situation, but hey, this might never happen again, so for the moment I was enjoying the ride. Once in the stairwell, things moved fast. Using straps and a carabiner hook that attached to the posts fixing the handrail to the wall, one person controlled my rate of descent while the others guided me down the stairs. Thanks in part to the strong Med Sled material, designed to protect the spine, I felt only a slight bump at each landing. The other nice surprise was turning the corner and learning we were only on the second floor. I should have known this after weeks of sessions, but throughout the incident, my mind flashed back to the longtime high-rise job I’d held before going on disability, and I was preparing to descend 14 floors. So much for clarity of thought in emergencies. Outside, the entire building was evacuated, with people abuzz and milling about. They laid me on the sidewalk just as the firetrucks arrived. It turned out to be a false alarm — a worker had set it off without even knowing. Hats off to the cool-as-cucumber health care workers at TIRR, proving once again that heroes wear scrubs. They performed with precision and gave me one last toboggan ride I’ll never forget.

EVERY EVACUATION IS UNIQUE

Haynes later said that drill was their second evacuation of someone with mobility issues like mine. They continue to train for people with varied or multiple disabilities, including by getting in the sling themselves. “We get in it and go down the stairs,” he says. “It is pretty comfy.” TIRR’s preparedness plan began with on-site training from Med Sled’s manufacturer, Ethos Preparedness. “We offer a ‘train the trainer’ program,’” says Rob Marshall, Ethos’ director of sales. The Ethos training team conducts “probably hundreds of classes a year,” he says. The device was introduced in 2004 to meet the needs of two 17-story hospital buildings in St. Louis. Today, Marshall says there are over 100,000 units deployed in 26 countries. Every one of the top-20 hospitals in the U.S. as ranked by U.S. News and World Report has them. When it comes to tools to aid in evacuations, the Med Sled is not the only game around — a Google search for “evacuation chairs for fire escapes” shows dozens of devices. Many facilities include emergency chairs and lifts in their evacuation plans, and many fire departments carry their own evacuation chairs or slings. The experts I interviewed were unanimous in urging readers to seek out those plans and speak to facility management wherever they live, work or spend time. Because condos and apartment buildings are compartmentalized, Chicago Fire Department District Chief Walter Schroeder says that unless fire is near the unit, “almost nine times out of 10 in a residential, we will have the occupants stay where they’re at.” Evacuations are “the most dangerous time,” he says, risking exposure to contaminants and the fire itself. CFD advises sheltering in place, communicating through 911 and the building’s emergency alarm systems. Fire companies have evacuation devices they can deploy when and if evacuation becomes necessary. Fire Marshall Kevin Wiley, a 41year veteran of the Park Forest Fire Department in suburban Chicago, says simply evacuating someone to a floor below a fire can be a good solution for a small, localized fire. “To evacuate you all the way out of the building may not be a prudent thing to do,” he says. “We may just keep you a couple of floors below the fire with the firefighter there.” A common high-rise feature is the “area of refuge,” constructed as a safe space on every floor, typically in a stairwell

The “Texas toboggan team”: Lindsay Stubbs, John Beer, Cody Timpone and Matthew Haynes.

or balcony. These are equipped with emergency communications and are required to provide enough space to keep wheelchairs out of the way of doors and foot traffic. Pressurized stairwells that prevent smoke and toxic gases from entering are common in areas of refuge, although not universal. Many feature pressurized “smoke tower” stairwells, entered through a vestibule of double doors, that afford three hours of protection and time for rapid-ascent teams to arrive. Don’t be surprised when a building’s emergency plan for people with disabilities includes use of the elevator. “Fireproof elevators are becoming more prevalent as time goes on,” Wiley says. Their cars and working elements are constructed to be noncombustible. “There should be a sign there on the elevators that they can be used as evacuation routes.” Checking your elevator in advance is crucial.

TAKING CONTROL

To navigate such a varied landscape, the common chorus of the experts is to take control by being prepared. “There’s only one way for you to be prepared and that’s to think about something before it happens,” says Wiley.

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The National Fire Protection Association offers a striking example: During the 1993 bombing of the World Trade Center, a man with a mobility impairment was working on the 69th floor. With no plan or devices in place, it took over six hours to evacuate him. In the 2001 attack on the World Trade Center, the same man had prepared himself to leave the building using assistance from others and an evacuation chair he had acquired and had under his desk. It only took one hour and 30 minutes to get him out of the building this second time. “What you trained to do is what you’re going to do,” says Bill Fertig, the director of United Spinal Association’s Resource Center and a wheelchair user who escaped a multistory hotel fire. He recommends getting to know local fire and emergency officials, learning a building’s emergency plan and improving on it yourself to ensure it’s not a “boilerplate plan.” Also regularly train and review your plan. If your building has a fire safety director, make sure you connect with them and are listed in your building’s updated pre-plan book. Fire com-

“What you trained to do is what you’re going to do.” manders and incident response teams can use the book to see floorplans, emergency numbers and individuals needing assistance. Also, make sure you can hear alarms and emergency instructions from your residence or workspace and know the location of communications devices in the stairwells. The firefighters I spoke with suggested a few simple steps you can take to bolster your emergency preparedness: • Take five minutes to get to know the different parts of the building and where the exits are. • Find the stairwells that are areas of refuge and locate the communication systems there. Find the nearest stairwell, and then find another in the opposite direction. Check how easy it is to open their doors and hit the communications buttons. • Check whether elevators are part of the fire plan. • Look for fire alarm pull stations throughout the building. • Count the doors between your apartment or office to the stairwells. If there is smoke, you may not be able to see very well. • Recruit at least two disability aides to help report, evacuate and keep you company during emergencies. Accessibility is the law of the land, so I had the misguided notion that when emergencies do occur, angels — or pros like at TIRR Memorial Hermann — would automatically swoop into the rescue. But fire doesn’t read the ADA. My toboggan ride showed that the safety I took for granted was the result of careful preparation and training. And now, I know that preparation begins with me.

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RESOURCES • Med Sled training video: youtube.com/watch?v=eZGOoyNwsHA • United Spinal Association’s Fire Safety for Wheelchair Users at Work and at Home: unitedspinal.org/pdf/WheelchairFireSafety.pdf • National Fire Protection Association’s Emergency Evacuation Planning Guide for People with Disabilities: tinyurl.com/ypadjkey • NFPA’s Hotel & Motel Safety: tinyurl.com/abbprc44 • Ethos Preparedness Med Sled: EthosPreparedness.com 314-965-7533

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OUTDOOR TRACKS By Kary Wright

FUN WITH BUGGIES Some of you may have caught my article on building a racing simulator with a computer and large-screen televisions, and how it has helped me gain strength and coordination for driving with hand controls. My friend and fellow quadriplegic, Landon, and I have been racing online, and scheming about real-life all-terrain vehicle fun for quite some time. Landon drives a souped-up Yamaha Rhino with hand controls, and I drive a much tamer 250cc buggy with hand controls that was adapted by Landon and his friends. Both units have electric low-effort steering, and we can drive them easily once we’re behind the wheel. During one of our chats over the summer Landon got us dreaming about how fun it would be if we held a mini-rally. “It would be epic to have two quads running ATVs around,” he said. “I bet that doesn’t happen often.” “I’ll bet you’re right,” I responded. “In the fall, when the crop is off, we can run around the fields.” Autumn rolled around, and warm weather allowed the crops to be harvested early, freeing up the fields for us. The mid-September forecast called for warm summertime temperatures — perfect for us — so we made a plan to get out riding.

Race Time When the day arrived, my buggy was fueled and ready in the garage. Landon texted that he was all loaded and on his way to my place. Like two children, neither of us slept much the night before. To get into the buggy, I have a rail attached to the ceiling of the garage. 46

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Landon’s souped-up Yamaha Rhino (left) and Kary’s 250cc buggy both have low-effort steering and hand controls, making them ideal for some fast and furious action once the fall crops have been harvested.

We use a Warn Pullzall portable battery-powered winch that works fine for lifting me. With 1,000-pound pulling power, it is especially versatile for applications like getting ATVs unstuck, lifting deer and more. Landon has an ATV trailer that he pulls behind his full-sized van, and it is equipped with its own self-contained lift to get him into the Rhino wherever he may be. Upon arrival, Landon and his partner, Tonya, parked and unloaded the Rhino, while my wife, Terry, and my friend Dave loaded me into the buggy. I parked my wheelchair beside the buggy, under the rail. They slid the sling down my back and around my legs, and the winch lifted me out of my chair. Then they slid me over the buggy with the rail, and dropped me in. Seatbelts tightened, steering wheel popped on, and pilot finally installed,

we were almost ready. I have rigged starter and kill switches on my hand controls. I started the engine and drove outside to meet Landon. Our mission: to make a 2.5-mile trail around the edge of the field. Landon had an action camera running. Terry jumped in with me, and Dave jumped in another ATV with cameras. Terry and I started by leading slowly around the field a couple of times, with Landon and Tonya following to get a sense of the terrain. A few laps later, tired of eating dust behind us, they zoomed ahead. I switched to high range in the buggy, and soon our “puttering around the field” had become “let’s see how fast we can do a lap.” With Landon zooming around faster and faster, I cut corners to keep up. Landon spotted a row of round straw bales and voila, we had a

slalom course. Our leisurely trail building mission became a no-holds-barred free-for-all with the ATVs burning doughnuts, slaloming bales, spraying dirt while doing figure-eights, racing and generally being irresponsible. We had permission to go on the fields next door, and soon our track had expanded. With three cars tearing it up, it sounded like a racetrack. Our neighbor heard the commotion and came by in his ATV to see what was going on. Landon stopped for a chat with him and invited him over, but he declined to join us, thinking he wouldn’t keep up. Landon, not surprisingly, took a shining to circling the bales. It was so much fun watching him that once my arms were too tired to drive anymore a couple of hours later, I got out of the buggy and Terry set me up with the drone. Landon and Tonya took off across the field, and I followed them with the drone. I’ve never used the “follow-me” mode, but it was relatively easy to

Nothing to see here, just two quads in ATVs tearing up a field.

figure out and lock on to them. The drone followed them wherever they went, up and down hills, around bales, and zooming in a straight line. I could circle them and change the angle, even fly backward in front and it would still track them. I learned to fly a little farther away, since the close-in highspeed turns and doughnuts occasionally eluded the tracking system.

Landon and I ended up with sore muscles — a sure sign of a successful day. We capped the day off with homemade pizza on a Traeger grill and reminisced about the day and our favorite highlights. In the end, we had a great time, got some great footage and pictures, and came away with another story to tell. Isn’t that what life’s all about?

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JANUARY/FEBRUARY 2022

IN THE MEDIA By Teal Sherer

A FIRST IN PRESIDENTIAL REPRESENTATION nondisabled actors, but NBC specifically wanted to cast an actor with a disability for Annie Live!, a holiday performance of the beloved, seven-time Tony Awardwinning musical that aired live on the network Dec. 2. “The real FDR’s disability was a vital part of his experience, his strength and his empathy,” says Lear deBessonet,

Photo by Yakir Ben-Hur

Alan Toy has acted in dozens of films and TV shows, but getting the opportunity to play President Franklin Delano Roosevelt in NBC’s Annie Live! surpassed his wildest expectations. “It was like doing a Broadway play, a movie, a TV show and an event all at once. It was exhilarating,” he says. “I was just trying not to think about the

“One of my favorite moments this past week on Annie Live! was meeting all of the girls from the National Dance Institute who opened and closed our show,” says Toy.

5 million people who were at home watching it.” Annie, which premiered on Broadway in 1977, takes place during the Great Depression and revolves around the title’s namesake, a spunky, optimistic orphan, who is taken in by billionaire Oliver Warbucks. The role of FDR traditionally has been played by 48

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who directed Annie Live!. “I wanted an actor who could bring depth and truth to their performance, which Alan Toy did beautifully.” Like the president, Toy contracted polio that resulted in paralysis. Toy is the first wheelchair user and polio survivor to be cast as FDR in a major production of Annie.

“It was great on the part of NBC to look for a person with a disability, and through the course of the audition process, they landed on the one actor in the world probably that has the same disability from the same cause that Franklin Roosevelt did. I think that’s pretty cool,” says Toy, 71. “I never thought at my age that I would be playing Roosevelt, though I always wanted to.” To prepare for the part, he watched recordings of FDR. “I think the essence of the character is that he is completely optimistic, and he’s just been elected,” he says. “He’s faced with the dregs of the Great Depression and trying to figure a way out of it. I think that if I go in there with a lot of optimism and love for the character, that’s the most important thing.” Toy contracted polio at age 3, when his family lived in Key West, Florida. He was a poster child for the March of Dimes, an organization founded by FDR in 1938 to raise money to help combat polio. “I was the cute little kid with crutches and braces in the ’50s. I was at bake sales and rodeos and stock car races,” says Toy. These early experiences in the limelight along with his involvement in theater in WinstonSalem, North Carolina — his family moved there when he was around 11 — helped lead him to a career in the arts. As an actor, Toy is probably best known for playing the creepy cult leader “Professor Finley” in Season 5 of Beverly Hills, 90210. His character convinces Kelly to dump Brandon

Photo by Virginia Sherwood, NBC

Photo by Zach Dilgard, NBC

for Dylan, who is rich, to help fund his cult activities. Toy also had guest spots in shows such as Matlock, Highway to Heaven and M*A*S*H, where he made his television debut. Some of his favorite acting experiences include playing a photojournalist in the movie Kansas and performing alongside Leonardo DiCaprio in the famous hand-washing scene in Martin Scorsese’s The Aviator. Toy has been instrumental in helping pave the way for better disability representation in Hollywood. As a union

activist in the Screen Actors Guild and the American Federation of Television and Radio Artists, he negotiated the inclusion of people with disabilities in the protected groups contract language. He then helped create and was the first co-chair of the Performers with Disabilities Committee. In 2015, Toy, who also has his master’s degree in Urban Planning from UCLA, retired from his role as the executive director of the Westside Center for Independent Living (now Disability Community Resource Center). Since then, Toy has done a lot of traveling. He celebrated Annie Live! by going to Mexico with his wife, Theresa, and son, John Henry, who helped him self-tape the auditions that booked him the role. “It was the love of my family and support of Theresa and John Henry that really got me this part,” he says, “between Theresa saying, ‘No honey, do it this way,’ and

John Henry saying, ‘Dad your glasses are reflecting, let’s move that light.’ So, we are going to celebrate together.”

“It was a magical experience getting to work with such a talented cast and a wonderful crew.” Toy has a part in the upcoming comedy film Bromates, executive produced by Snoop Dogg, and he hopes his performance in Annie Live! leads to more acting work. “If I move our image forward before I check out, that is great. And the cool thing now is I am not freaking out about needing money to pay rent — that’s taken care of. It’s just going to be for the love and fun and the heck of it now.”

Left: Toy said pushing FDR’s antique wheelchair in Annie Live! was like “driving a yacht.” Below: Toy described what was going on behind the scenes as “controlled chaos.” “There were around eight different cameras moving around and two dozen props people moving things in and out constantly. I’ve never been a part of a show like that before, where it all has to happen like that simultaneously and there is no retake.”

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Life changing science Our Research Center of Excellence, housed at the University of Miami Miller School of Medicine is dedicated to finding effective treatments, improving the quality of life of individuals with spinal cord injuries, and ultimately, finding a cure for paralysis. To be considered for current and future research studies, please visit our website: http://www.themiamiproject.org to complete our digital intake form or call our offices and request a copy of the form by mail. For more information, call 305-243-7108.

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

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

Brand New PressureGuard APM2 Mattress with Digital Control Unit. Alternating Pressure / Lateral Rotation Air Therapy Surface. “Float” mode provides powered flotation therapy. “Alternate” mode changes loading in 10-minute cycle for choice of lateral rotation or alternating pressure therapy. Queen Size, Therapy in Center, Model AP28060CTR-29. Paid $3,185.00, Will Accept Offer. Contact: ini5buy@msn.com 2016 FES 300 cycle- 3 muscle group therapy. Purchased from Restorative Therapies for $13,300. Asking $5,000 OBO. Call 360-461-5569 New Product, Electric and Manual Wheelchair seat pouch, $14.99 visit www. cushpocket.com” Nationwide Wheelchair Van Rentals. For the next time you want to get out, vacation, doctors appointment, or try before you buy. Learn more at www. BLVD.com Over 1500 wheelchair Accessible Vehicles for sale at one website. A complete selection of New, Used and Pre-Owned wheelchair vehicles from dealers and private parties nationwide. Check it out today. www.blvd.com

VACATIONS Ocean-front condo, wheelchair friendly, sleeps six, pool, boardwalk to beach. Rents daily, weekly, monthly. St. Simons Is., GA. bmmk4@frontier.com 419-569-6114. St. Augustine Beach 3 bedroom condo. Great location across from ocean in historic Florida North East. Recent renovation for para owner. Excellent local accessible activities. For accessibility questions please contact: dbrucesinclair@gmail.com. For availability, pictures and pricing please visit our VRBO listing: https://www. vrbo.com/1984785

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E-Z PULL DOOR CLOSER An assistive device that allows wheelchair, walker and scooter users to close a door behind them when the doorknob is out of reach. Easy to install. Made from clear polycarbonate, so it blends in with any decor. Invented and produced by a T9 para vet! www.e-zpulldoor.com

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

ADVERTISE WITH NEW MOBILITY!

To place your classified ad or to get information on advertising rates, call: 800-404-2898, ext. 7253 or email your request to mchintalla@ unitedspinal.org JANUARY/FEBRUARY 2022

LAST WORD

WHAT TO WATCH FOR ON NEWMOBILITY.COM

Now that we are printing every other month, we’ll be debuting more original content than ever before on Newmobility.com. Check the back page here when you get your print copies for a preview of the exciting content we’ll be rolling out online while we work on the next print issue. Here’s a peek at some of the stories we’re working on for January and February. An Oral History of Black Disability — Author and award-winning disability justice expert Luticha Andre Doucette talks with the Black pioneers who shaped the disability rights movement. Best/Worst — Seth McBride kicks off a new reccurring feature where we look at what makes a specific destination the best, or worst, of its kind when it comes to accessibility. Sex, Wheels & Relationships — We’ll continue our tradition of highlighting our best sexuality and relationships content in February. We’ve got some fun stuff planned … Product News & Announcements — Our product guru Mike Franz is scouring the web and recent press releases to keep you in the loop about all the gear you need and want.

NM LIVE VIDEO SERIES with Teal Sherer Teal Sherer is excited for her video interview series, NM Live, to be truly live this year on Instagram and Facebook Live. “It allows our viewers to be a part of the conversation and ask questions,” she says. Upcoming guests, dates and times will be announced on social media and the interviews will be saved to our YouTube Channel. Do you have a specific wheelchair user related topic you’d like to see Sherer address or a guest request? Please send those to tsherer@unitedspinal.org. WATCH PAST NM LIVE VIDEOS HERE: YouTube: youtube.com/NewMobilityMedia

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ANJALI FORBER-PRATT

FROM RUSSIA WITH EMOTION