Life in the Time of COVID-19 Stories, Safety, Solutions

UNITED SPINAL ASSOCIATION’S

life beyond wheels

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COVER STORY LIFE IN THE TIME OF COVID-19 15 COVID-19 has affected all of our lives in more ways than we are even aware of yet. To help make sense of the all-too-confusing present, we’ve assembled a snapshot of the post-COVID world we are living in. We hope these personal stories, works of art, resources and expert advice provide reassurance and support as we all work to figure this out together.

Art (detail) by Amanda Russel (see page 24)

FEATURES DEPARTMENTS

30 FAMILY-FRIENDLY 4 BULLY PULPIT 5 BEHIND THE STORIES ADAPTIVE FUN There’s no reason to stay on the sidelines when the 6 SHARE family heads outside for summer activities. JESSICA 8 UNITED NEWS FARTHING helps you get back in the game. 9 REFRAMED 10 PRODUCTS 34 AGING PARENTS AND 12 HOW WE ROLL ROLE REVERSAL Your parents were there for you when you most 40 MEDIA needed them, and now it’s your turn to give back. 42 DAILY DILEMMAS RICHARD HOLICKY talks with wheelers who are 44 caring for aging family members. ERVIN 48 LAST WORD Cover art by AJ Brockman life beyond wheels

BULLYBy Ian PULPITRuder

NEW MOBILITY IS THE MONTHLY MAGAZINE OF UNITED SPINAL ASSOCIATION SHOULD I STAY OR SHOULD I GO? PRESIDENT & CEO: JAMES WEISMAN VP OF PUBLICATIONS: JEAN DOBBS Music has played a huge part in helping me and secure the best outcomes. I forcefully maintain my sanity during the COVID-19 advocate for myself, train my caregivers well, quarantine, as I’ve found that the right song and cultivate advocates who can speak up on EDITORIAL or album can set the tone for the day and my behalf if I’m still not being heard. PUBLISHER: JEAN DOBBS provide inspiration when it might be hard But these are not good times. People are EXECUTIVE EDITOR: JOSIE BYZEK to find. Whether it’s Bob Marley reassuring afraid, and hospitals are overtaxed. Many EDITOR: IAN RUDER me every little thing is gonna be all right, or states and hospitals have prohibited admitted ASSOCIATE EDITOR: SETH MCBRIDE R.E.M. letting me know that the end of the patients from bringing a partner or caregiver EDITOR EMERITUS: TIM GILMER world starts with an earthquake, not a virus, into isolation. I watched a friend who was SENIOR CORRESPONDENT: BOB VOGEL I’m a sucker for finding unintended meanings not infected, but admitted for unrelated CORRESPONDENT: AARON BROVERMAN or purposes for the music I enjoy. reasons, get stuck — alone — on a floor with When The Clash’s “Should I Stay or all the COVID-19 patients. No visitors, no CUSTOMER SERVICE Should I Go” started playing on Spotify Toll-free 800/404-2898, ext. 7203 recently, my brain kicked into high gear. This During good times, a might be simply because it’s a killer song, “ but I think it’s more that the title and central trip to the hospital can ADVERTISING SALES lyric mirror a question that has been inces- be a disempowering, 718/803-3782 santly on my mind since I barred the doors MANAGER, CORPORATE RELATIONS: and windows and took refuge in my bubble: dehumanizing and, dare I MEGAN LEE, EXT. 7253 If I do end up catching COVID-19, how long say, dangerous experience AD MATERIALS: DEANNA FIKE, EXT. 7250 should I stay at home, and when should I go for a person with a visible to the hospital? PRODUCTION If there is a “correct” answer, I know disability. And these are PRODUCTION MANAGER: DEANNA FIKE what it is. I’ve interviewed doctors and read not good times.” every disability-centric guide on the web. As CIRCULATION Dr. Thomas Bryce, the medical director of CIRCULATION MANAGER: Mount Sinai’s Spinal Cord Injury Program, outside caregivers, just a steady stream of BEVERLY SMITH told me, as someone with a cervical SCI, I overworked doctors and nurses coming from should hightail it to the ER as soon as I start neighboring rooms flush with the virus. POSTMASTER: Send address changes to New to experience trouble breathing (for more That is my worst nightmare. As much as Mobility, 120-34 Queens Blvd, #320, Kew Gardens NY 11415. Subscription rates: $27.95/year; $35.95/ from Dr. Bryce, see page 23). I like to think the skills I’ve learned and the year in Canada; $67.95/year international via I get that. I also understand the underlying protections that are supposed to be in place airmail. New Mobility (ISSN 1086-4741), Volume will ensure my safety, I know that in this eerie 31, Issue 320, is published monthly by United medical reasoning, and would describe my- Spinal Association, 120-34 Queens Blvd, #320, self as a very risk-averse person. And while twilight zone we currently reside in, this is not Kew Gardens NY 11415. Copyright 2020, all rights the case. In these uncertain times, there are reserved. Reproduction without permission of any there is no way to know how I will react until material contained herein is strictly prohibited. We I’m actually in the situation, I don’t see myself few guarantees. welcome comments; we reserve the right to edit going to the hospital until I feel like I have If something happens and I do get sick, I’m submissions. hoping that all the hours I’ve spent thinking Periodicals postage paid at Flushing, NY exhausted every other option. and additional mailing offices. During good times, a trip to the hospital about the right time to go to the hospital will can be a disempowering, dehumanizing and, pay off. For now, I’m turning the music up and dare I say, dangerous experience for a person doing everything I can to stay healthy. I’ve www.newmobility.com with a visible disability. As people with dis- survived seven weeks, and I’m ready for the www.unitedspinal.org abilities, we learn ways to combat this reality next seven.

4 NEW MOBILITY life beyond wheels

BEHIND THEWith Ian Ruder STORIES COLUMNISTS MAT BARTON • JOSH BASILE SHERI DENKENSOHN • MIKE ERVIN MIKE FRANZ • BROOK MCCALL TEAL SHERER • TODD STABELFELDT REVECA TORRES • KATE WILLETTE life beyond wheels KARY WRIGHT This special COVID-19 issue needed a compelling and evoca- tive cover image, and Florida-based artist and entrepreneur AJ Brockman nailed it. I asked Brockman if he had a title for the image, and he said he didn’t but that he’d considered a CONTRIBUTORS few. “It’s a whole new world we’re living in,” he says. “Right KIM ANDERSON • CHRISTIAAN BAILEY now, it feels like we’re trapped, but hopefully there is a light LAWRENCE CARTER-LONG at the end of the tunnel. That’s what I wanted to get at with MICHAEL COLLINS • RORY COOPER this.” Brockman has been isolated at home with his wife and DEBORAH DAVIS • JENNIFER FRENCH son, managing the restaurant/art gallery and music venue he ALEX GHENIS • RICHARD HOLICKY runs and tackling more freelance assignments to pay the bills GARY KARP • PAULA LARSON while those two venues are mostly closed due to COVID-19. REGAN LINTON • LILLY LONGSHORE “It’s definitely been a struggle,” he says. “We’re all trying to KATE MATELAN • BEN MATTLIN make the best of a crazy situation.” ASHLEY LYN OLSON • KENNY SALVINI ERIC STAMPFLI • MITCH TEPPER ANTHONY TUSLER • KIRK WILLIAMS After years of writing the Motorvation column for New CORY LEE WOODARD Mobility, Mike Collins isn’t thinking about flashy cars LOREN WORTHINGTON and groundbreaking adaptive vehicles these days. Like the rest of us, Collins is stuck at home, but unlike most of us, he is eagerly waiting to get into the hospital. Collins, who had to postpone long-scheduled elective surgery, is WEB PARTNERS one of seven contributors who share their unique tales BACKBONES in this month’s cover story. “I’m hopeful I’m near the top CURB FREE WITH CORY LEE of the list when they get things going again,” he says, ROLLIN’ RNS “but I don’t intend to sacrifice my life for a surgery that’s ROOTED IN RIGHTS supposed to prolong it.” SPINALPEDIA SPIN THE GLOBE

When it comes to pitching story ideas, we don’t have many FEATURED WEB PARTNER: writers who can rival Richard Holicky for quality and sheer CURB FREE WITH CORY LEE An award-winning travel blog volume. Knowing that, I had to laugh when he told me that he devoted to sharing the world from wasn’t in love with his original pitch for this month’s feature a wheelchair user’s perspective. on wheelchair users caring for aging parents. “I thought I’d be Featured in National Geographic hard-pressed to find enough people who are taking care of and on the Travel Channel. their parents, but it was quite a surprise and very enlighten- Curbfreewithcorylee.com ing that so many people were doing this,” he says. Holicky adds that he was impressed by the creative ways people are helping their parents, even when their physical function is limited. “These people are very persevering,” he says.

UNITED SPINAL BOARD OF DIRECTORS: unitedspinal.org/our-story Please send queries, manuscripts or feedback to Ian Ruder: [email protected]

MAY 2020 5 SPECIAL UNITED SPINAL SECTION: SHARE ASSOCIATION’S Sundance Film Festival and the Success “Inspiration is in the of Crip Camp other person and not something we really have any say over.” life beyond wheels

COVID-19 Coverage Bubble Man Fantastic information to have, guys! Wow! This is an amazing article (“Para/ Thanks for this since I’m heading into Medic,” March 2020). I have a T10-12 Sports Chairs Come of Age a need for homecare post-surgery and incomplete injury from an 18-foot fall Plus Power Soccer

this is critical to review. that occurred in 2003. Can I use a PEMF newmobility.com MAR 2020 $4 Patrick W. Maher bone growth stimulator after having Newmobility.com titanium rods and screws in place? My guess is, probably not. But I’m sure going A Great Disservice to show this article to my orthopedic surgeon at my next visit in two weeks. I have been the owner/operator of Eagle Thank you so very much for providing Sportschairs, LLC for 40 years. I am us with this valuable information! By the knew who weren’t “disabled.” writing about the article you recently way, I broke my left femur 10 years ago. So by doing nothing exceptional, but published about wheelchair sports At that time, I went to my doctor, but just living my life, I provided inspiration equipment, “Specialized Sports Chairs they didn’t do X-rays and sent me home. to him. Maybe next time someone and the People Who Use Them,” by Bob Six weeks later, I went back to my doctor, sounds a little dumb and says you are Vogel. This article does a great disservice and X-rays show the bone was broken to the people who use sports wheel- but was now mending. My wife says I their inspiration for doing something as chairs. You completely omitted several need to be bubble wrapped. simple as getting in your car, just smile brands and manufacturers of specialty and think, “I hope it opens their mind.” Robert Lamb wheelchairs — notably my company, Ea- Lucian Smith Newmobility.com gle Sportschairs, and RGK Wheelchairs, Philadelphia both major sponsors of the NWBA Author Bob Vogel responds: I know of Nationals [which were not mentioned]. several people who used bone growth stimulators in conjunction with rod or Longtime Reader, By not consulting more sources and in- metal hardware in their femur or tib/fib- First Time Writer cluding all of the options, you cheat your ula. I hope you have already seen your I have always enjoyed this mag. My readers of the chance to make the best doctor and are healing quickly. daughter is a nonverbal quad with cere- choice for their needs based on equip- bral palsy. Your mag is always the best ment, price and availability. source for info to deal with everything. Not only do we build custom equip- Don’t Be Offended Thank you. Best to all of you. You have ment for highly competitive athletes, Recently there have been a few pieces on no idea how much good works and we also build great budget equipment “inspiration” and how some disabled folks hope you give us! that helps build teams and promote are offended by [nondisabled people] Name Withheld sport for up-and-coming athletes. who are inspired by us doing things that As a remedy, I would like to see an arti- strike most of us as mundane daily tasks. cle on adaptive sports equipment that But I would like to just remind the readers Crip Camp includes all of the brands and manufac- that inspiration is in that person and not It’s really cool that former President turers. It would be helpful if you also something we really have any say over. Obama is a producer (“Crip Camp,” included a chart to compare equipment I had a good friend break his back March 2020)! I hope a lot of people by features and price. Stay safe and well in a skiing accident. He said that he besides just people with disabilities are in these trying times, wasn’t afraid because he had watched interested! Barry Ewing me deal with my paralysis for years Alexandra Shepard Founder/Owner Eagle Sportschairs, LLC and do more than most people he Newmobility.com

6 NEW MOBILITY AD - TMK200211 - Rev04 - MM Award - Fev-Mar 2020 magazine (EN).indd 1 2020-02-11 6:15 PM MEMBER BENEFITS NEWS FROM UNITED SPINAL unitedspinal.org

s the COVID-19 pandemic spreads across the world and affects every aspect United Spinal Association is dedi- of our lives, United Spinal Association is working tirelessly to ensure the cated to enhancing the quality of needs of the disability community are met. life of all people living with spinal A cord injuries and disorders (SCI/D) Currently, United Spinal’s focus is to lobby senators and representatives as they by providing programs and services debate what will make it into the various stimulus bills aimed at dulling the worst that maximize independence and effects of the crisis. At the time of writing, over 2,700 messages from United Spinal enable people to be active in their members have been sent to members of Congress on COVID-related legislation. The communities. advocacy and policy team has been following up on those contacts to make sure advocates’ stories are heard and their needs are reflected in policy. BENEFITS INCLUDE: President Trump signed the third stimulus bill — Coronavirus Aid, Relief and Economic Security Act — into law March 27. Wins for the disability commu- Personalized Advice and Guidance nity include increased funding for Aging and Disability Resource Centers, the Peer Support Administration for Community Living’s Aging and Disability Services Programs, and an Advocacy and Public Policy extension of Money Follows the Person funding through November 30. The CARES Act also grants individuals a cash payment up to $1,200. Married cou- Veterans Benefits Counseling ples who file taxes jointly will receive up to $2,400, and there is a $500 supplemental Accessibility Advocacy payment per child. To receive these payments, a person must have a Social Security number. Asset and income limits, such as those in place for SSI, do not apply because Local Chapters this payment is being treated like a tax rebate rather than income. Initially, people were New Mobility magazine required to have filed tax returns with the IRS in order to receive payments, but thanks Informative and Educational to disability community advocacy, this was updated recently so that Social Security, Publications retirement, survivors and disability insurance recipients no longer need to file tax returns to get their stimulus money. Ongoing Educational Webinars In addition, there are a number of other policy priorities that haven’t yet made it into stimulus bills. Omitted from the legislation were dedicated funding for Home and Membership in United Spinal Community-Based Services and increased supplies and personal protective equipment Association is free and open to for individuals with disabilities and our caregivers. United Spinal also advocated for all individuals who are living with Money Follows the Person to be extended permanently so as to get and keep as many SCI/D, their family members, people as possible out of nursing homes, where there is clearly a higher risk of COVID- friends, and healthcare provid- ers. Visit unitedspinal.org or call 19 infection. United Spinal also wanted the CARES Act to include strong language 800/962-9629. prohibiting discrimination against people with disabilities in accessing health care. A new coronavirus response package, potentially worth another $2 trillion, is being United Spinal has over 70 years of developed as of writing in mid-April. United Spinal’s advocacy and policy team is work- experience educating and empow- ing very closely with congressional offices to make sure these and other missing priori- ering individuals with SCI/D to ties of the SCI/D community are part of the package. The additional priorities include: achieve and maintain the highest • Increased federal funding for Medicaid. levels of independence, health and • Passage of the Coronavirus Relief for Seniors and People with Disabilities Act (S. personal fulfillment. We have 50+ 3544), which provides funding for job protection for personal care attendants and local chapters and 190+ support home care workers. groups nationwide, connecting • Ensuring that there are no shortages of critical medical supplies and equipment. our members to their peers and fostering an expansive grassroots SHARE YOUR STORY: Anybody who wants to join this important effort can con- network that enriches lives. tribute to and spread the word about United Spinal’s new Coronavirus Storybank. We are collecting personal accounts about how people in the SCI/D community are coping during the coronavirus pandemic. Please send your stories to advocacy@ unitedspinal.org, and we will make sure congressional leadership hears us and hears about the challenges our community is facing. — Mike Ervin

8 NEW MOBILITY REFRAMED by Reveca Torres

FEELING MY PAIN y eyes are closed, and I scan my body from head to toe. What do I feel right Min this moment? Eyebrows, chin, jaw. Neck — it’s tight and hurts. Shoulder, hurts. Elbows, wrists, they’re on fire. Fingertips are tingling. A flare at my hips crackles and hisses, screaming through my legs to my feet. I identify areas where I’m in pain, take a deep breath, and visualize exhaling into the pain. It dis- solves, even if only briefly. I have constant nerve pain or muscle aches and have made the decision to stay away from pain meds unless I absolutely need them. Stubborn? Yes. In my journey to be pain-free I have tried many alternatives and a combination of all make my day somewhat manageable, most of the time. A friend once told me, “Your pain is chronic. Acknowledge it, and then let it go.” Easy for him to say, the guy without pain. But he was right. I practice doing this — acknowledging it and letting it go. It chooses to stay. And so, we co-exist. “A friend once told me, ‘Your pain is chronic. Pain-free. Do I even Acknowledge it, and then let it go.’ Easy for remember what that feels like? I have come to the real- him to say, the guy without pain.” ization that pain is a part of my life. It’s not something that’s happening to me, and I try to stop hating or resenting it. Instead, as I practice acknowledging my pain, I also look for enjoyable or pleasurable moments in my day, such as the sun warming my skin or savoring a meal, and I acknowledge them too. Still, sometimes I can’t even concentrate. Pain takes over my thoughts. Sometimes pain just sucks. I share this with you so maybe you don’t feel so alone or defeated, and because if we can’t say it to each other, then who else? Thanks for feeling my pain.

MAY 2020 9 PRODUCTS By Michael Franz

VITAGLIDE IS BACK. IS IT BETTER?

In my nearly two decades with a spinal cord injury, there hasn’t been much new exercise equipment that has intrigued me. Most new equipment is too expensive and complex to use at home, so I stick with what’s tried and true. Recently, however, an old favorite has been resurrected and updated to keep pace with modern options. The newly redesigned Vitaglide offers a combination of strength and cardio training that can be done in the comfort of your own home. SCI veterans might remember the original iteration of the Vitaglide. First released in 2003, the Vitaglide was unique in that it provided users a way to perform a cross-country skiing motion while seated. The first model was very much a product of its time. The resistance was adjusted mechanically, the only information Michael Franz that could be gathered about your finds the new Vitaglide design workout was the time displayed to be much on a small LCD screen, and the improved. whole thing felt rickety and cheaply made. The concept behind the new fasten together. The only tools neces- controlled by a touchscreen attached Vitaglide remains the same, but there sary for assembly are an Allen wrench, to the frame. The touchscreen allows are many significant improvements. a Phillips screwdriver and an adjust- the user to adjust the resistance, the Assembling the Vitaglide is a two- able wrench. The whole process took duration of the workout (which can be person job that would be difficult for approximately 90 minutes. counted up or counted down) and the anybody — let alone a wheelchair user Once assembled, the Vitaglide has Glide Factor. — to do solo. The machine arrives in a footprint of 56 by 48 inches. The The Glide Factor is an algorithm two large boxes that are quite heavy. height is controlled by a gas spring and developed by the makers of the My brother and stepdad used a dolly to can be raised or lowered to accommo- Vitaglide that enables users to set wheel the boxes into my house. Once date any type of wheelchair. Having goals and monitor their performance. the parts are removed from the boxes, no hand function and poor balance, I It tracks energy expended through putting everything together is fairly was unable to adjust the height inde- reps completed and the resistance straightforward. The biggest challenge pendently. However, once the user level at which they were completed to is manipulating the large pieces of the finds the proper height, it will not give you a Glide Factor score for each machine in order to align the parts to need to be changed. Everything else is workout. I found the Glide Factor use-

10 NEW MOBILITY ful — being able to quantify my results allows users to perform a rowing motion be able to see your progress over time was helpful to track my progress and in addition to cross-country skiing. The as you are working out. Lastly, at the challenge myself to improve. motions can be changed on the fly, so if moment there is not an option for tri-pin The biggest improvement on the the user gets tired of one exercise, they handles to be added to the Vitaglide. new Vitaglide is how the arms of the can switch to the other at any time. Personally, I prefer to use adaptive grip- machine can function independently of The new Vitaglide is not without ping aids over tri-pin handles, but this each other. On the original version of its shortcomings, however. Retailing at could be an issue for some. The develop- the Vitaglide, the user could only do a $3,299 plus shipping, it is expensive. I ers are working to find a cost-effective cross-country skiing motion in which find it to be worth the money, as it is way to offer them as an option. the two arms operated together. If the a huge upgrade over the original, and All things considered, I would user pulled back on the right side, the I like to exercise as much as possible. strongly recommend the Vitaglide to left side would go forward automatically, But it might not fit in the budgets of anybody looking to add to their workout regardless of whether the user exerted many. To date, the Vitaglide has not regimen. In my opinion, it is suitable any force to move the left side. In my been covered by insurance, though for those with injuries C5 and below. It experience, this led to my stronger some people have had success getting offers a great cardiovascular workout arm dominating the workout. The new funding through the VA. The company while simultaneously strengthening the model eliminates this problem. The arms recommends that those who purchase arms, shoulders, back, chest and core. move independently of each other and the Vitaglide have their doctors write The makers of the Vitaglide achieved a The Safe, Practical Theand Safe, Convenient Practical way to give resistance going both forward and letters of medical necessity to help with tremendous feat by combining so many The Safe, Practical andtravel Convenient wherever way and to backward, resulting in a more balanced reimbursement. Options for financing exercises into one machine that can be and Convenient way to travelwhenever wherever you want. and workout for both arms. For those with are currently being explored. used independently or with minimal travel wherever and whenever you want. strength imbalances, the resistance Considering the price, it would be assistance. The price point might scare whenever you want. No more worries about can be adjusted for each arm in order nice if the Vitaglide stored and tracked some people away but, in the long run,

Nohaving more accessibleworries about No more worries about to accommodate the difference. For workout information. It isn’t a major I feel that the benefits of using the havingfacilities. accessible facilities.having accessible instance, the resistance on the left side inconvenience, but I have to track my Vitaglide will outweigh the cost. could be set to three while the right progress using a spreadsheet on my The Vitaglide is available for purchase facilities.  Different models to meet side is set to four. The new design also phone. I think it would be beneficial to for $3,299 plus shipping at vitaglide.com.  Different models to meet specific needs!  specificDifferent needs! models to meet “GO-ANYWHERE” Chairs  Simple to assemble; no “GO-ANYWHERE” Chairs  Simplespecific to needs!assemble; no TheThe Safe, Safe, Practical Practical tools required. andand“GO-ANYWHERE” Convenient Convenient way way to to Chairs  toolsSimple required. to assemble; no The Safe,traveltravel Practical wherever wherever and and Convenient and  Safe and easy to use. way towhenever travelwhenever wherever you you want. andwant.  Safetools and required. easy to use.  Seat and footrest heights whenever you want.   SeatSafe and and footrest easy to heights use. NoJust Nomore more worries worries In! about about Awarded VA Contract V797D-30180 are adjustable. No morehaving worrieshaving accessible aboutaccessible having Mobility  areSeat adjustable. and footrest heights facilities.facilities.  Casters have “total-lock” accessible facilities.  Castersare adjustable. have “total -lock” Solutions brakes.  Different Different models models to meet to meet  brakes.Casters have “total-lock” • Different modelsspecificspecific needs!to meet needs! specific  Lightweight and durable, needs!  “GO-ANYWHERE”“GO-ANYWHERE” Chairs Chairs  Lightweightbrakes. and durable, SimpleSimple to assemble; to assemble; no no high-quality aircraft-grade • Simple to toolsassemble;tools required. required. no tools “GO-ANYWHERE” Chairs  high-Lightweightquality aircraft and durable,-grade  Safe Safe and andeasy easy to use. to use. aluminum. required. aluminum.high-quality aircraft-grade  Seat Seat and andfootrest footrest heights heights  Compact, convenient, and • Safe and easyare adjustable.are to adjustable.use.  Compact,aluminum. convenient, and  Casters Casters have have “total “total-lock”-lock” PORTABLE! • Seat and footrest heights are  PORTABLE!Compact, convenient, and brakes.brakes.  Won’t Rust or corrode; adjustable. Lightweight Lightweight and anddurable, durable,  Won’tPORTABLE! Rust or corrode; high-high-qualityquality aircraft aircraft-grade-grade easy to clean. • Casters have “total-lock” brakes.  easyWon’t to Rustclean. or corrode; aluminum.aluminum.  Virtually maintenance- • Lightweight Compact, andCompact, durable, convenient, convenient, high-quality and and  Virtuallyeasy to maintenanceclean. - aircraft-gradePORTABLE!PORTABLE! aluminum. free.    free.Virtually maintenance- • Compact,Won’t convenient,Won’t Rust Rust or corrode;and or corrode;  Cushions are available in easyeasy to clean. to clean.  Cushionsfree. are available in PORTABLE! (3) colors and remove  Virtually Virtually maintenance maintenance- -  (3)Cushions colors and are remove available in • Won’t Rustfree. orfree. corrode; easy to clean. easily for cleaning.  Cushions Cushions are availableare available in in easily(3) colors for cleaning. and remove • Virtually maintenance-free.  Optional accessories (3) colors(3) colors and andremove remove 30-Day  Optionaleasily for accessories cleaning. • Cushionseasily areeasily available for cleaning. for cleaning. in (3) colors include: wheeled custom  Optional Optional accessories accessories  include:Optional wheeled accessories custom and remove easily for cleaning. Risk-Free travel bag, positioning include:include: wheeled wheeled custom custom travelinclude: bag, wheeled positioning custom • Optional accessoriestraveltravel bag, bag, positioning include: positioning Trial belts, slide-out commode belts,travel slide bag,-out positioning commode wheeled custombelts,belts, slide travel slide-out -commodebag,out commode tray, 2-way adjustable positioningtray, belts,tray, 2-way 2slide-out- wayadjustable adjustable commode tray,belts, 2- wayslide adjustable-out commode tray, 2-wayheadrest, adjustableheadrest, and andheadrest,upgraded upgraded and For Home AND On-The-Road; headrest, and upgraded ForFor home home AND AND on -the-on-the-road;road; When When ya Gottaya Gotta Go, Go, We We Go GoWith With Ya!” Ya!” headrest,tray, 2-way and adjustable upgraded upgradedcushions! cushions!cushions! cushions! For home AND on-the-road; WhenWhen ya Ya Gotta Gotta Go, Go, We We GoGo With Ya!” Ya!” cushions!headrest, and upgraded For home AND onwww.goesanywhere.com-the-www.goesanywhere.comroad; When ya [email protected] [email protected] Go, We Go With 800- Ya!” 800-359 359-4021-4021 cushions! For homewww.GoesAnywhere.com AND on-the-road; When | [email protected] ya Gotta Go, We Go With Ya!” | 800-359-4021 www.goesanywhere.comwww.goesanywhere.com [email protected] [email protected] 800- 800-359359-4021-4021 www.goesanywhere.com [email protected] 800-359-4021 MAY 2020 11 Custom wheeled travel case “For home AND on-the-road; When ya Gotta Go, It'll Go With Ya!" available. HOW WE ROLL

ARTIST Brogan Joe Murphy

Brogan Joe Murphy was trained classically as a realist oil painter, but his art was put on hold after back surgery complications made him a paraplegic. Now he uses painting as a pain management tool while he completes his life’s work — a portrait of poet Walt Whitman. #WWWWD? (What Would Walt Whitman Do?) When Brogan Joe Murphy was first commissioned to paint reduced drying time from weeks to minutes. This made Walt Whitman, he hated the results. He felt the subject painting from a wheelchair more doable and allowed him to was forced upon him and that making a color painting of a create other paintings for charity, including for United Spinal photograph lacked originality. Instead of rehashing someone Association. But soon, fundraising became secondary. else’s artistic vision, he wanted to create an original painting of “What I found is that painting is very similar to meditating the famous poet. in one respect,” says Murphy. “You’re focused on something Then in 2012, at the age of 58, a botched back surgery not in your head. So when I paint, I don’t feel pain. I can left Murphy a paraplegic and any painting was put on hold literally paint for an hour and feel nothing until I stop to think thanks to neuropathic pain. “I couldn’t reach the easel, and about it. Pain really is perception.” it was hard for me to work for a long period,” says Murphy. Murphy believes that, in the interest of mental health, it’s “Oils don’t dry [quickly], so it was very difficult to work with a important to come back to some aspect of who you were painting and hold it in my lap.” before you were injured. It’s advice he gives many newly- Four years later, he was invited to set sail on The Impossible injured wheelchair users he mentors on behalf of United Dream — a 60-foot catamaran that goes up and down the east Spinal. To that end, he decided to redo that old Walt Whitman coast giving people with disabilities the chance to embark on painting. At first, it was about honoring the poet’s 200th a completely accessible sailboat. The captain of the vessel birthday and creating a painting worthy of The National is also a paraplegic, and he made a request Murphy couldn’t Portrait Gallery. But as Murphy fell deeper into the research, refuse: paint a piece on the boat’s sail to be auctioned off for he started to see uncanny similarities between Whitman’s life an Impossible Dream fundraiser. and his own. “He was paralyzed on his left side. I have a lot of Time constraints meant oil paints were out of the question, pain on my left side. But imagine what it’s like to be paralyzed so Murphy swallowed his pride and used acrylics, which in the 1800s,” says Murphy. “During the Civil War, Whitman

CAN’T LIVE WITHOUT: LIFE WISDOM: I learned you’re still SCI PARENTING: HARDER OR EASIER?: My wife, probably, but the same person after SCI. You just Some things are harder, like travel, but it’s also joy — you need to have to learn new ways to use the not particularly harder. My kids worry more find joy in your life. resources at your disposal. about me than they should though.

12 NEW MOBILITY Not Another Average Joe

Brogan Joe Murphy explains the unique history of his name.

Here’s the problem. When I was in California and started to paint, in the town I was living in, there were 13 Joe Murphys, and two on the same street. I knew if I was going to paint under a name, I needed one people

would remember. My great grandmother’s name was Jenny Brogan. She came over on a boat at 7 years old from Ireland

“and married a guy named Peter Murphy. I thought, I’ll just use both names. I’ll use Brogan and Murphy. Everyone just calls me Joe anyway, and Brogan Joseph Murphy seemed pretentious to me, so I shortened it to Brogan“ Joe Murphy and just stuck with it. Murphy considers “Walt Whitman of Camden" his life's work. My real full name is Joseph Edward Murphy, but when I He even grew out his own hair and beard in order to get the was in the hospital there was another guy on the floor with light right on Whitman’s face in the painting. the exact same name as me. It was like, ‘Oh my God!’ The Irish were so limited with their options. If you were born became a nurse. He would visit with patients, impart his Irish, you were named after saints. wisdom and write letters to loved ones for them.” Not only did he see parallels to Whitman’s life in his age, injury and peer-mentoring practice, but Murphy started looking like him — growing his hair and beard out until he became the spitting image of Whitman himself. He says he cultivated this look in order to get the light right on Whitman’s face in the painting. Meanwhile, after 13 months on his easel, the new painting, now called “Walt Whitman in Camden,” is almost complete. And, in what became a century-spanning spiritual commune between subject and artist, Whitman taught Murphy to see life and all its setbacks in a new way. “It’s a beautiful day in Boston today,” says Murphy. “I look at the colors, I smell the wind, and I realize these are the things Walt Whitman would be doing as a matter of course — embracing every ounce of life joyfully. I think no matter what This painting is called “Steph and Izzy” and was created by Murphy you’re dealing with, that’s a really great lesson to learn.” for an exhibition called, “Overcoming Barriers.” It received a special For more on the Impossible Dream, see “Sailing the Impossible governor’s citation. Dream,” May 2018 NM.

This is the first painting WHY I JOINED UNITED SPINAL: An SCI is a sudden shock Murphy completed after for anyone, and people need to know it’s going to be OK. I his injury. He painted it on a sail, as part of a fun- needed to know that. Once you hear that and meet people draiser for The Impossible who inspire you, it helps you inspire yourself. Dream catamaran.

MAY 2020 13 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 [email protected] 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. It may be hard to remember, but six months ago no one had heard of social distancing, and the idea of the United States asking citizens to quarantine at home seemed like a laughable movie plot. Then a novel, highly-contagious virus ripped across the globe and changed everything forever. COVID-19 has affected everyone’s life to some degree, but its impact on our community has been dis- proportionately large. In this issue, we hear how the virus and all the disruptions that come with it have changed the lives of seven wheelchair users facing unique situations: a nurse, an active vent user, a traveler isolated in Argentina, a man struggling to find a caregiver, a mom-to-be, a quad awaiting key surgeries and an outdoor enthusiast. We’ve also compiled a selection of art from artists with disabilities, along with the latest medical information, news and resources to make this unprecedented and unsettling time more manageable.

STORIES: SNAPSHOTS FROM OUR COMMUNITY 16 FACTS: DISABILITY-SPECIFIC MEDICAL INFO 23 ART: IMAGES FROM ARTISTS WITH DISABILITIES 24 RESOURCES: YOUR QUESTIONS ANSWERED 26

MAY 2020 15 patients, and we’re seeing younger people with no prior illnesses end up on vents. It’s scary. There are people out and about, but I’m staying in the house, updating my resume and applying for nursing jobs. I’ve never seen this many nursing job listings. I’ve already applied for 27 jobs today — those are positions that weren’t there last week. I’ll go through, website by website, and submit my application for all the relevant jobs. You would think a nurse "I went from with a firsthand knowledge of disability would be in being unwanted demand, but discrimination is rampant. and stuck at home to being I’ve had staffing agencies tell me, “We can’t place needed on the you. We don’t think anyone’s going to want you.” I front lines." had two interviews for dialysis positions last week. The first person claimed he forgot he made the appointment when he saw me, and when the second found out I was in a wheelchair, I heard him tell his assistant, “In a wheelchair? For an interview? No way. Nurses can’t be in chairs.” It’s frustrating, but I guess it comes with the ter- ritory of being a trailblazer. I live with my parents and two siblings, and everyone is doing all right so far. My dad and sister are considered essential employees, and my mom still works three days a week, so there’s lots of coming and going. We’ve been super vigilant: no guests and no visitors. We set up a decontamina- tion zone right when you come into our house. We have a set of towels at the front door and everything gets sprayed down with Lysol and hung outside when possible. Everyone takes showers when they get home. It seems like a lot, but I don’t know how at risk I am personally with my spinal cord injury, and my mom and sister both have compromised lungs. We don’t want to exacerbate anything. A NURSE IN WAITING My brother and I have been at home alone most of the time. Andrea Dalzell I’m staying sane with heavy doses of pet therapy with my Shih Transverse Myelitis Tzu, Gigi, and regular exercise. Shout out to the Rollettes — Brooklyn, New York I’ve been watching their exercise videos and workout stuff. My friends have been tagging me on exercise challenges, and I’ve been adapting where I can. Still, I would give anything It’s been two weeks since my job as a school nurse in lower Man- for creme brulee from Opera, my favorite restaurant. It’s not hattan closed down, and I’m quarantined with my family in anything over-the-top or fancy. It comes in a little ramekin, Brooklyn. The healthcare system here is already overwhelmed. and everything about it is perfect. I would eat them all day if I The hospitals are putting up tents to be able to triage COVID-19 could. But now the restaurant is closed, and I can’t get it at all.

16 NEW MOBILITY respect of my peers. I think they had their own trepidations about having a coworker with a disability on the floor since they’ve never worked with someone like me before. Last night, it was really cool to hear one of the nurses say they need to keep me because I work hard and help everyone out. As a pio- neer, I know I’m changing perceptions, and it’s important they see that not only do I not need their help, but I can help them. I’m learning a ton on the job. Working in the pandemic, I have to process minute to minute. I have to figure out how I’m hanging that IV bag, moving that bed and turning or repositioning that patient. I don’t have a day or an hour to think about how to get something done. I just have to do it. As someone with a disability, I’m constantly trying to be in- novative, and that’s helpful when I have to figure something out and get it done with safety and infection control and everything else going on. I go into work thinking, “Please God give me the knowledge that I need to keep everyone alive.” I don’t want to have to call a rapid, I don’t want to have to call a code. I don’t want to do those things. After the shift, I’m thankful and just like, I need to go home and sleep.

LIVING IN A HOUSE OF CARDS Chris Tango Incomplete Cervical Injury Hudson, Massachusetts

I am an incomplete quadriplegic. I am on a ventilator. I don’t like this pandemic. Before the pandemic, I would’ve told you that, all things considered, I dominate this disabled life. As someone whose body utterly failed nearly two decades ago, On the bright side, we have more than enough toilet paper. I still managed to maintain a It’s not a hoarder thing, my family is just always on the look- relatively normal existence. out for a sale, and we had loaded up on a good deal before all Sure, I required a 24/7 this started. babysitter, but I ate at res- Editor’s Note: We checked in with Dalzell a week after she taurants, drank at bars, submitted her article and discovered her job applications gambled at casinos and paid off — she now works as a hospital floor nurse in the traveled anywhere within Bronx. Following is her update: driving distance. I lived for these glimpses of normalcy. Last night I worked my seventh shift since being hired at My biggest complaint was Montefiore Hospital in the Bronx. I went from being unwant- that I could never truly re- ed and stuck at home to being needed on the front lines. I lax, that the severity of my never would have guessed that in my first job as a floor nurse, disability caused me to be con- I would be thrown into the fire like this, but I’m loving it. stantly and invariably aware. I’m working on the one floor in the hospital not dedicated Before the pandemic, I rarely to COVID-19, and our main goal is to rule out the virus. We’re felt vulnerable. Yes, I’ve been so short staffed that it is literally nonstop from the moment on a vent my entire adult life, you get in the building until you leave. Typically, a nurse staff- but I’ve always viewed it as ing ratio would be six to one, and last night I had 13 patients. just another inconvenience. We had 33 on my unit when I arrived and 37 when I left. I did realize my lifestyle was, The work is incredibly gratifying, but so is earning the and has always been, a house

MAY 2020 17 of cards, albeit a sturdy one. Even if it were to collapse, I knew There are no backups or safe havens. There quite literally I could probably rebuild it. aren’t any hospitals for me to safely go to. I am at home, and The primary reason I felt so confident in my situation was that’s where I’ll stay until this is over. the team of caregivers I’d surrounded myself with. Everybody My life is simpler now. The outings, social gatherings and in my position has a primary caregiver and mine is my moth- normalcy I previously yearned for are gone. My ventilator is er. She has been there every day for the past 18 years while also no longer an inconvenience, but a lifesaving device sought working a full-time job from home. My father worked outside around the world. For now, my house of cards is still standing. the home but helped when he could, especially with the more But there’s a hurricane outside, and if it blows my house over, I physical tasks. I’ve also had numerous nurses and personal don’t know if I’ll be able to put it back together. care attendants who are capable of taking care of almost any need I may have. These people allowed me to live about as well as a person who can’t move or breathe could live. QUARANTINED IN ARGENTINA But that was before the pandemic. Kirk Williams As I write this, it’s March 27, and the world has stopped. C6 Quadriplegia After a brief period of jokes, dismissal and denial that COV- Buenos Aires, Argentina, by way of Boulder, Colorado ID-19 would affect my life, shit began to get real. Don’t worry, they said. It’s only dangerous if you’re old or have underlying conditions. They said it only affects “vulnerable” populations. It’s crazy to think that a just over a month ago I was in the Well, I’m a Type 1 diabetic on top of everything else, so I’m far reaches of Patagonia with only my brother and guanacos definitely part of a vulnerable population. I had to learn more roaming around for company. Now, I’m in an Airbnb rental, about this disease. looking out a 10-story apartment building at many confused I reached out to my human faces staring back doctors and spoke to my I know that life as we knew it may never be the same at me. Argentina, where current and former nurses, after this. I felt this way when I first had my accident. I had last been traveling several of whom work at But similarly to how I’ve adapted, rebooted in my converted van, has large prestigious hospitals been in total lock down around Massachusetts. I and remodeled, our world will too. since March 20, and so heard similar things from here I am, quarantined everyone. Their ICUs were in a concrete jungle [see already full. The scene at “Baja or Bust, July 2019]. some hospitals was de- My brother and I were scribed as “crazy,” “wild,” taking what we thought was and “unlike anything ever a short break from van/tent seen before.” Two pieces life, checking out the big of advice were universal: city, when COVID-19 cases Don’t get this virus and started spiking. We were don’t get hospitalized for trying to decide whether any reason. The sheer vol- to stick to our planned itin- ume of patients in these erary — heading back on hospitals would prevent the road to Uruguay and someone like me from re- then onto Brazil — or to ceiving adequate care. just hang tight. The Airbnb Since those conversa- we rented is reasonably ac- tions, life has turned up- cessible and works well for side down. I was forced me, definitely not a given in to cancel my nurses and South America, so we de- PCAs indefinitely. My cide to stay here. Once they mother and father are the started to close borders and only humans I’ve seen put up road blocks outside for over two weeks, and cities, we knew we’d made they’ll likely be stuck do- the right decision. ing my care by themselves Still, I’ve spent zero time for weeks or months. It’s physically touching nature not the disease itself that in the last month, which scares me; it’s the fact that is a new personal record I I’m finally vulnerable. wasn’t intending to surpass.

18 NEW MOBILITY The apartment has no plants, no artwork, no yard, nothing but to connect with the outside world. Zoom and FaceTime have the bare essentials. Fortunately, I have a balcony that gets direct been wonderful technological coping tools in times like these. sunlight until approximately 2:34 p.m., and a view over a pool Sheltering in place from COVID-19 in another country is with a few trees. Fresh air and sunshine are important for my an interesting situation to be in. I feel horrible for all those sanity, so I’m thankful for that. suffering, but I try my best not to dwell on something I can’t Is it Tuesday, or is it Wednesday? I can’t really keep change and instead only focus on what I can. I know that life track these days. As of late, everything seems to smoosh to- as we knew it may never be the same after this. I felt this way gether. Wake up, check Instagram, make breakfast and do when I first had my accident. But similarly to how I’ve adapt- a little workout. Netflix, nap and repeat. It’s like an episode ed, rebooted and remodeled, our world will too. of Groundhog Day, nothing seems to change other than the Stay healthy, positive and optimistic. I’ll see you on the length of my hair and size of my belly. other side. Surprisingly though, I’m rarely bored. I’m not mad, upset or confused. There’s nobody to blame and nothing to change, so I’m just making the best of the situation and living day-by- AN UGLY STATE OF MIND day — a useful skill that most quadriplegics are forced to learn. Matt Grillot I’ve stared a daily workout using resistance bands and strapping Gatorade bottles to my hands to imitate weights. C5-6 Quadriplegia DeWitt, Iowa Best part is, the weights get lighter as I hydrate! I’m thinking on Fridays I’ll switch to beer. I’ve begun reading and writing more and still somehow managed to procrastinate doing my As an Iowa resident who depends on Medicaid, I’ve been liv- taxes. I’ve enjoyed listening to neighbors play music on their ing in a caregiving nightmare for a long time, but COVID-19 balconies for everyone to hear and the nightly 9 p.m. clap for has amplified the insanity. I live alone, and for over 10 years, all the healthcare workers in I’ve relied on having caregivers the city. It’s a nice community come four times a day. I have a here in Buenos Aires. hard enough time getting and I’m challenging myself to keeping the few hours a day cook more, since my brother of service I get. Since the state does all the shopping. And be- privatized Medicaid in 2016, cause the selection of groceries the bureaucracy has compli- is slim, improvisation is key. cated every step of the hiring Garlic and onions are a staple process, from certification to and provide a welcome aroma payroll and beyond. to fill this otherwise bleak The result is that something space. When I complement that should be simple — hir- the meal with an Argentinian ing a qualified caregiver — can vino, being stuck in this apart- take six weeks to four months in ment doesn’t feel that bad any- good times. I had one caregiver more. Good food takes time give me a generous two-and-a- to prepare, something I have half-month notice and, despite plenty of these days. aggressively looking to fill her I briefly skim the news spot, I was unable to get a new about the United States and person certified by her end date. have realized how fortunate I’m looking to hire a new care- it is that Argentina took pro- giver now who is better for my active measures dealing with mental health. I know the COV- this pandemic rather than re- ID-19 situation is going to make active. Being that all borders You take what was already an isolating that significantly worse. and airlines are locked down, I situation and all of a sudden you can’t have I spent 19 days in the hos- couldn’t leave here if I wanted church events or go to restaurants or mov- pital in February before all the to. But I feel like I’m as good ies or any social outlets. The result is that the COVID-19 stuff hit, and my off, or better, here than I would stay just reminded me how be back in the states. depression and anxiety I deal with on a frustrating and depressing it This whole situation isn’t regular basis are even worse. can be to deal with the medical ideal, but if boredom and in- establishment. convenience are all I have to deal with, I’m very fortunate. I It’s tough enough being a quad in the winter and early have a roof over my head, a hot shower and good enough Wi-Fi spring because of cold temperatures and lack of access. Then

MAY 2020 19 you take what was already an isolating situation and all of a doctors and the hospital facility is wonderful, but thinking sudden you can’t have church events or go to restaurants or about the complications the virus presents can be scary. movies or any social outlets. The result is that the depression I’ve been in complete isolation for the past two and half and anxiety I deal with on a regular basis are even worse. I’m weeks, but now that I have to go to pre-natal appointments living in an ugly state of mind. more frequently, the risk of exposure increases. I asked what Thanks to my depression and anxiety, I haven’t been pro- would happen if I get sick and the plan is that I would be iso- ductive for the last two weeks. I’m trying to catch up on pa- lated, and if I give birth while sick, I’d be separated from the perwork and projects from when I was in the hospital, but babies immediately. everything is taking me two or three times as long. I’m just On top of that, the rule at the hospital for now is only one now starting to get caught up on stuff, even though I’ve been visitor during and after labor, but I’ve seen other cities where home a little over a month now. Normally I’m a pretty strong they are removing even that privilege because of COVID-19 reader, but I’ve just been zoning out in front of the TV because concerns. I’m going to talk to my doctor, because, at a mini- my attention span hasn’t been there. mum, I need my husband to be there to help me transfer and do my daily care. After 30 weeks of battling SCI-related low blood pressure PREGNANT AND QUARANTINED and pregnancy-related anemia, I look like a pale corpse with a Daniela Izzie big belly. I can’t transfer myself anymore, and because of faint- ing spells, I can’t safely use my ceiling lift. I’ve had two iron C5-6 Quadriplegia infusions because my red blood cell count was rock-bottom, Northern Virginia and I spend a lot of my time on bedrest trying not to blackout. I try to keep up with my job working for Spinergy, but it My go bag is ready by the front door, and at 30 weeks pregnant is really hard because my blood pressure is not cooperating. with a high possibility of pre-term birth before 40 weeks full There are some days where I start blacking out every 10 min- gestation, my husband and I are ready to drop everything and utes. All I can do is stop, sit there, breathe, lean forward and head to the hospital to wel- wait until it passes. When come our twin girls. it doesn’t pass, I have to get It’s hard to believe that on the couch and lie down. it was just last May when And, as a quad, it’s really we set up a consultation hard to do my work in that with a high-risk pregnancy position. I thought I knew specialist to find out my op- what fatigue was, but oh no, tions as a quad. We decided this is a whole other level. to go for it and were shocked I’ve had a lot of other when we found out I was women with spinal cord in- pregnant with twins. No in juries ask how I’m doing or vitro, no history of twins, what my thoughts are on no genetic disposition … having a baby, and I try to it was totally unexpected. I keep it all in perspective. All was like, “OK. So much for these things bother me from all my meticulous planning. day-to-day, but as quads, This is going to be a little we’re so used to dealing with different than I anticipated.” challenges. The knowledge We learned about all that, unlike most spinal cord the possible complications injury-related obstacles, what

and obstacles we might face Photo by Bonnie Turner Photography I’m going through with the because of my spinal cord pregnancy is just a temporary injury, but we never could It’s gone from the novelty of being a quadriplegic challenge, makes me feel OK. have expected we would be having twins, to being a quadriplegic having Knowing the issues I’m spending the final weeks of twins during a pandemic. having are not going to my pregnancy on quaran- hurt the babies, and they’re tine in our rural Virginia not really going to hurt me, home. It’s gone from the novelty of being a quadriplegic having helps put my mind at ease. Yeah, physically, it’s not fun, but twins, to being a quadriplegic having twins during a pandemic. it’s not going to kill me. Emotionally, however, I’m feeling Despite all that, we’re doing pretty well. I’ve got a great team amazed at my body for growing two babies despite paralysis, of doctors, and I love the specialist I’m working with. We’ve and it is both an empowering and heartwarming experience. been going to see them once a month, and we will be in touch Follow Daniela’s pregnancy and parenting journey at every two weeks during the third trimester. I totally trust our daniizzie.com.

20 NEW MOBILITY I was scheduled for meetings with surgeons to plan out surgeries that should allow me to regain some lost function and hopefully alleviate some chronic pain. I’ve had to place my needs on hold.

not left my house for the past month, nor do I want to. So- cializing face to face with friends and neighbors is a thing of the past. The only other people going in and out include my caregiver and others who have a need to be here, like home health nurses who visit periodically. My caregiver is now sleeping here at night in order to provide assistance related to the high blood pressure I’d hoped to correct with the surgery I had planned. That has increased my out-of- pocket home healthcare costs significantly, and those are not reimbursed by anyone. I’m over 60 and I’m quadriplegic, so I know the virus could have a more significant impact on me than it would on younger, healthier individuals. I live near the first reported case in the United States, in one of the hardest hit areas, so I pay careful attention to what is happening and try to follow the recommendations of health care professionals with first-hand knowledge. Seemingly simple things, like buying food and replenishing medical supplies, are no longer easy. When it comes to stocking food, I was ahead of the crowd. I had already been purchasing groceries online and having them delivered. That is easier said than done today. Everyone seems to be using those online services, and the businesses are so oversubscribed that it is impossible to place an order. Hoarding is rampant, but I thought I had plenty of cleaning supplies and hand sanitizer prior to the outbreak. Now that this is going to last for months, I am not so sure. Thankfully, I have nearby family members who watch the store shelves when they do their own shopping, so I have not A FUTURE ON HOLD run out yet. Mike Collins Suddenly I find myself in com- C5 Quadriplegia petition with those who are treating Redmond, Washington the victims of the virus, as we use the same gloves, masks and some 2020 was supposed to be the year I ac- other supplies. When it comes time complished a lot to make my life better. to reorder, I imagine those short- Instead, it has turned out to be a year ages will impact my ability to get I’ve had to place my needs on hold. them in a timely manner, if at all. At the start of the year, everything was in place: a new in- All across my state, medical appointments are being sched- surance plan, new physicians, new mail order pharmacy, and uled and subsequently canceled as the virus shows no signs of I was already scheduled for meetings with surgeons to plan abating. Doctors who insisted on face-to-face office visits in out surgeries that should allow me to regain some lost func- the past are now reluctantly agreeing to telephone conferences. tion and hopefully alleviate some chronic pain. The situation is extremely frustrating, as I know that my My best-laid plans have completely fallen apart, thanks to health is unlikely to improve and may even deteriorate fur- this nasty novel coronavirus that has killed thousands world- ther as this year drags on. There is no projected date when wide. Rather than lament what has happened, I know that I surgeries might begin again. With hospitals here filled with need to be extremely grateful that I am still here and living virus victims, that date might be well into next year. At least independently. I am alive. I intend to stay that way. Hopefully the rest of my This virus has necessitated a few lifestyle changes. I have peers will do the same.

MAY 2020 21 THE COVID-19 CAMPOUT Matt Tilford T12 Paraplegia Salt Lake City, Utah

I was paying attention to COVID-19 before the United States was hit by the pandemic, so I was prepared for the quarantines. Some of my favorite hobbies are cycling, hiking and camping, and I knew I would need to be creative if I wanted to fulfill those passions while isolated. I may not have a trail to hike or bike, but I have a backyard and plenty of space to set up a base camp. The terrain may not be as rugged as Joshua Tree, Yellowstone or Arches National Parks, but I’m using my imagination. My work life has come to a screeching halt. I moved to Salt Lake City from Oakland, Cali- fornia, at the beginning of the year to follow my dreams of working in the outdoor industry. I Matt Tilford's girlfriend, Emily Tsitrian, joined his COVID-19 campout. was in the beginning stages of interviewing to become a recreational guide at National Ability Center and I earthquake. Somehow, I slept through the rattling and shaking. was stoked to land a job at REI. Unfortunately, REI was one of I lived in California most of my life, so earthquakes are a normal the first companies to temporarily close its doors. I haven’t been part of life for me. Unfortunately, Salt Lake City’s infrastructure to work since March 11. I’m still getting paid but expect that to wasn’t as prepared as I am. Downtown streets and sidewalks stop soon and I’m ready for the possibility of being laid off be- were covered with crushed brick and broken glass. Having a nat- cause outdoor recreation isn’t an essential industry. ural disaster during a virus pandemic is what I call bad timing. So, right now all I have is a backyard, camping gear and a lot This has me worried about the upcoming hurricane sea- of spare time. The COVID Campout continues. I’m using this son. Our government had six weeks to prep for COVID-19 time to freshen up my survival skills, test out new camp gear and failed. Hurricane season starts in June and lasts five and, of course, keep my mental health in order. I won’t be able to months. Let’s hope our government is prepping for the next do much hiking but there’s way more to camping than explor- disaster that hits while we’re still experiencing this disaster. ing the wilderness around you. I’m a few weeks into camp- Food and nutrition are just Having a natural disaster during a virus ing and have had a blast being as important as exploring when pandemic is what I call bad timing. creative in my backyard. I’m not you’re camping. I’ve been using sure what my future holds. I do camp stoves to cook dinner and know I have a tent, sleeping bag make coffee. Because Salt Lake and campfire to keep me oc- City has had a few snowstorms cupied for the time being. You during my campout, I’ve even don’t need a back yard or a tent melted snow for drinking wa- to camp. All you need are a few ter. Camp stoves aren’t the only blankets draped over the couch cooking option while camping. or kitchen chairs. Turn on Net- I used some stones around my flix fireplace crackle and micro- yard to build a fire pit. I even col- wave yourself a s’more. It doesn’t lected twigs, sticks and brush to look like COVID-19 has plans to use as fuel. I find a lot of joy from pack up camp anytime soon. So the sound of crackling wood and why not set up your own COV- sizzling steaks. It wouldn’t be a ID-19 camp to pass the time? campout without s’mores, so Follow Matt’s COVID Cam- you better believe I’ve roasted a pout at MattTilford.com and on few marshmallows too. YouTube at /MrMatthewTilford Early into my backyard cam- and on social media with #covid- pout, Utah was hit with a 5.7 19campout.

22 NEW MOBILITY FACTS AND ADVICE: COVID-19 AND SCI/D

As part of our continuing coverage on COVID-19 and SCI/D, New On April 14, the Mayo Clinic released a list of COVID-19 Mobility Editor Ian Ruder emailed Dr. Thomas Bryce, the medical precautions and advice for people with disabilities. The director of Mount Sinai’s Spinal Cord Injury Program, to get advice comes from Dr. Kristen Garlanger, a physiatrist, and answers to some of the more frequently asked questions in the Lisa Beck, a clinical nurse specialist. SCI/D community. “When you have a condition that causes paralysis, or weak- IAN RUDER: Does the isolated diagnosis of SCI/D in an other- ens muscles in the chest, abdomen or diaphragm, you may wise healthy individual put them at increased risk of contract- not be able to remove lung secretions by coughing,” says ing COVID-19? Garlanger. “You may have difficulty inhaling and filling the DR. THOMAS BRYCE: An isolated diagnosis of SCI/D in an oth- lungs with oxygen that is carried to the rest of the body." erwise healthy individual may put the individual at increased For those with physical disabilities, she offers a few tips for risk, depending on the cause of the SCI/D. If someone acquired maximizing respiratory and immune function: SCI/D through transverse myelitis, Guillain-Barré syndrome, or • Stay hydrated to keep lung secretions thin. spinal cord compression from cancer, they may have an im- • Eat a healthy, well-balanced diet to boost the paired immune system and be at greater risk. immune system. If someone is self-isolating and requires a personal care as- • Perform deep breathing and “coughing exercises,” which sistant who does not live with them, they may be at increased are controlled coughing maneuvers that help clear lungs. risk of contracting COVID-19 from the personal care assistant. • Change position frequently, using gravity to help clear lungs. IR: Does SCI/D-related impaired respiratory function put someone at higher risk with COVID-19 even if they aren’t oth- SOCIAL DISTANCING CONSIDERATIONS FOR erwise immunocompromised? If so, what injury levels causes WHEELCHAIR USERS more concern? While social distancing is important for everyone, Beck says that wheelchair users should be especially mindful of TB: SCI/D-related impaired respiratory function puts some- keeping distance from others. “When CDC guidelines talk one at higher risk with COVID-19 even if they aren’t otherwise about keeping at least six feet from another person, that’s immunocompromised. Persons with all levels of SCI/D above especially important if you use a wheelchair,” she says. “Your T12 have a reduced ability to both inspire air maximally and to head is lower than people who are standing, so you may be forcefully expel air through coughing. The higher an injury lev- more vulnerable to respiratory droplets produced when an el is, the greater the impairment of respiratory function will be. infected person coughs, sneezes or talks. Droplets drop.” With COVID-19, the tiny air sacs in the lungs that absorb oxygen can fill with fluid, preventing oxygen from being ab- ADVICE FOR PEOPLE WITH CAREGIVERS sorbed. Persons with SCI/D above T12 have less reserve lung For those who rely on caregivers, making sure that every- capacity, meaning that when parts of the lung are not work- one stays healthy is of primary importance. Beck offers a ing to absorb oxygen, other areas are not able to take over and few suggestions: compensate for the loss. • Ask caregivers to wear a mask when they enter and work With an impaired cough, individuals are less able to expel with you in your home. secretions that fill the airways and air sacs, further preventing • Have caregivers wash their hands when they arrive and oxygen from being absorbed. The higher the injury level is, the each time before touching you. weaker the cough. • Ask caregivers to be vigilant about not touching their face or yours. IR: At what point of showing COVID-19 symptoms should • Have caregivers check their temperature before arrival. someone with SCI/D go to the ER? • Ask caregivers not to come to your house if they are not TB: As COVID-19 can progress very fast, with a person breathing well, including if they have symptoms such as a cough or with mild shortness of breath one minute, then being unable to temperature of 100.4 degrees Fahrenheit or higher, or if breathe and in respiratory failure several minutes later. Persons they have a known exposure to someone who is sick. who are at greater risk of developing severe symptoms, espe- • There’s no doubt that coordinating backup help is dif- cially persons with upper thoracic and cervical levels of SCI/D, ficult If your primary caregivers get sick or are unable to should go to the hospital if they are experiencing any shortness come to you. But that’s why, Beck says, “It is so crucial to of breath. Hospitals should have a lower threshold for admit- plan ahead to find someone who can help if your caregiver ting persons with SCI/D-related impaired respiratory function gets sick or isn’t able to assist you.” than for persons without such impaired respiratory function. To read the full post, go to: mayocl.in/2VMnnzR

MAY 2020 23 In early April, we asked six artists Amanda Russel who use wheel- Above left: Strange Days 8.5 x 11" digital painting chairs to submit pieces that This is a part of a digital series dealing with the beauty of the season infused and infected by coronavirus. Everything speak to these around us feels different — we are surrounded by invisible unique times. particles waiting to infect us — but the seasons and the weather are predictably doing what they always do. They delivered

Photo by Michael James Schneider James Michael by Photo See detail of image on Contents page with themes of strangeness, iso- Nathaniel Bibaud Above center: Social Distance lation, anxiety Ink and gouache on paper and, ultimately, I am a C5 quadriplegic, and I work from home as an art- the power of art ist. My day-to-day schedule hasn’t changed all that much, to ease us into although now I can’t break up my routine with an active social life. I am trapped inside the house with more time the unknown. to spend with my thoughts, so I am trying to use this as an opportunity to tackle some more personal projects.

24 NEW MOBILITY Mariam Paré Right: Les Reves de la Femme in Utero 20 x 24" acrylic on canvas Below: My Brave Face, photograph

My life as a person with C6 quadriplegia has been upended in countless ways by the current global pandemic. Elements within these two images symbolically express some of the effects that the crisis has had. As a person with a disability I am already used to a certain amount of general isolation, but during this crisis, I have experienced deeper levels of isolation and uncertainty than anything I've experienced before. The worry about contracting the virus, and the knowledge that I am in the category of those who could very well die from it, is in the forefront of my mind on a daily basis. Things I have to do for work to generate income, or getting food, begin to feel like I'm playing Russian roulette. Even receiv- ing help from my caregivers now puts me at risk for the virus, yet suspend- ing my care for the time being isn't an option since I live alone and cannot take care of myself. So instead I live in this constant oscillation between concern and need — trying to remain calm and positive, putting on a brave face, while at the same time, protecting myself and bracing for what comes next.

MAY 2020 25 Richard Bell The Last Mask 30 x 20" acrylic and oil on canvas

This idea came about after talking to my friend Lila in New York, who is a doctor at one of the large hospitals there. She was concerned about the lack of protective equipment and her own safety. Later on the news, they were talking about how people were sanitizing and reusing facemasks. So the idea for this painting was to speak to that issue in pictorial form. This would be the last mask, so I put it on a clothesline with a lonely clothes pin next to it to drive that point home.

Wes Holloway It’s a Matter of Perspective 8.5 x 11" pen and ink on paper

26 NEW MOBILITY Tommy Grieco The Love of Music in Isolation 3 x 4' acrylic on canvas

This piece is my interpretation of COVID-19 and social distancing. In the beginning, I wasn’t sure about this virus or what it would do to me personally. A lot of fear and anxiety. Now, being self-isolated from family and friends, I hope for a positive outcome. The three individuals on the top are practicing social distancing, which will probably last for weeks and maybe months. The guitar player is every artist, playing for all the essential workers to give them hope and joy during the tough times and sacrifice. The profile is the essential worker with a tear and blood droplet from their eye over the pain and heartache they deal with week-to-week just to see their families. The individual at the bottom left is either someone next to their home surrendering to quaran- “The piece was inspired by our time as a nation tine or a person celebrating the end of quarantine. No matter how tough this spent in isolation and quarantine. This is not a “new” normal will be in the upcom- new experience for most of us with disabilities. ing years for everyone, I know we will We have all spent time, often alone, looking out move forward to be better citizens toward our neighbors who paid the at the world where things are still happening. true sacrifice. The struggle to reconcile your own needs with the needs of many is something we try to figure out often.”

MAY 2020 27 Are there any specific nutrition and grocery shopping How do we disinfect pushrims/wheelchairs to keep our homes virus-free? recommendations? The easiest method of disinfecting your wheelchair or other assistive devices is to For this question, we turned to use bleach wipes or other sanitizing wipes, though washcloths or paper towels with Joanne Smith, a certified nutri- soap are effective when you don’t have access to anti-microbial wipes. Any sur- tionist, wheelchair user and long- faces of your chair that you or anyone else regularly touches should be disinfected time contributor to New Mobility. every time you return from a public space. For manual wheelchair users, these She says that while eating a include handrims, tires, brake handles, backrest bars or push handles, arm rests and balanced diet won’t prevent you any part of the frame that you place your hands on when you transfer. For power from getting COVID-19, having chair users, high-touch areas include arms rests, joysticks and controls. the strongest immune system Consider keeping a container possible will help you fight it if of disinfecting wipes at the sink near- you do contract the virus. est to your entry door. If wipes aren’t Smith has a number of rec- available in your area, keep a supply ommendations for immune- of washcloths or paper towels there. boosting nutrition. On the Start by washing your hands for 20 vitamin front, she says, “Don’t seconds. After washing, but before do a multivitamin. They have touching any part of your chair, grab a little bit of everything, but a wipe or a soapy towel. Wipe down it’s not enough to give you the all high-touch areas until they’re vis- boost that you want.” Instead, ibly wet, and wait for them to dry she recommends looking for an before touching. immune-boosting formula that If someone in your home is at includes vitamins A, C, D and high-risk, you could set up a disin- zinc. If you can’t find one, then fecting station with wipes and hand take those vitamins separately. sanitizer immediately out- Probiotics are also extremely important for immune func- Illustration by Ben Hubbard side your entry door. Pushing the chair forward while applying soap Follow the same tion, so regularly ingest will clean your handrims. procedure, but use yogurt, sauerkraut, the hand sanitizer kombucha or other fer- instead of washing your hands. If your hands or arms are visibly mented foods. In addi- soiled, go directly to the sink once you get inside to do a more tion, a rampant inflam- thorough cleanse. matory response is one “It is important to remember that direct contact with an infected of the drivers of severe surface does not guarantee the spread of infection, so long as you COVID-19 symptoms, so continuously wash your hands and keep them away from your face,” Smith recommends a diet rich says Peter Axelson, a manual wheelchair user, owner of Beneficial Quad Tip: Don’t in anti-inflammatory omega-3. use your mouth Designs and author of the most comprehensive disinfecting guide for to grasp things Fish, like salmon and sardines, wheelchair users we’ve seen yet. that other people are a good source, as are nuts The most critical part of chair disinfection is making sure you wash have touched. and seeds. Source: sci-can.ca/ your hands and disinfect your chair at the same time after returning home To stock up on groceries resource/covid- — otherwise you will re-soil your hands as soon as you touch your chair. 19-guidance-our- that are healthy, Smith says To read Axelson’s full “Wheelchair and Assistive Technology Users spinal-cord-injury- it’s OK to switch over to fro- Precautions for COVID-19” guide, go to bit.ly/39RLuCx. community zen fruits and veggies, as the

28 NEW MOBILITY How can I keep fit without leaving my house? There are a million disruptions to life during this pandemic, but exercise doesn’t need to be one of them. Having a few workout aids on hand, like resistance bands and wrist weights, would be ideal. But even if you can’t get any, it’s still possible to get your heart rate up and your muscles firing with nothing but your body. One of our favorite resources is the Youtube channel Adapt to Perform, which features a myriad of quality home workout videos. Most can be performed with minimal, or sometimes no, specialized equipment right from your wheelchair. Additionally, the series, “Yoga for Paralysis,” by Quinn Brett is a great way to get an in-depth lesson in the multitude of physical and mental benefits that adaptive yoga can provide. For more info, check out “Stay at Home Wheelchair Workouts” at newmobility. com/2020/04/stay-at-home-wheelchair-workouts.

way produce is now flash- frozen maintains nutrient Are deliveries safe to touch? values. For her shopping list, The short answer is yes. The CDC and the WHO agree that both food delivery packag- Smith is cutting down to the ing and packages received through the mail are considered very low-risk for COVID-19 basics. “I’m sticking to canned transmission. Most important is to eliminate contact with delivery people — let the driv- chickpeas and kidney beans, ers drop packages outside and retrieve them after they’ve left, and whenever possible frozen food and supplements use delivery services with contactless payment for food. The WHO says, “The likelihood as much as I can. I’m not doing of an infected person contaminating commercial goods is low, and the risk of catching a lot of fresh stuff.” Other rec- the virus that causes COVID-19 from a package that has been moved, travelled, and ommendations include to skip exposed to different conditions and temperature is also low.” sugar, but make sure you have It is possible that the virus could be present on locally delivered goods, like some butter on hand, as it can groceries or restaurant food, if it was handled by an infected person, last for months in your but public health authorities don’t believe this to be a driver of fridge, up to a year in transmission. Instead of sanitizing packaging, authorities recom- your freezer and is mend immediately throwing it away and washing your hands a great source of after transferring your food to your own plates or bowls. If vitamin A. Also, you want to be extra cautious, consider following a more buy turmeric thorough disinfecting method, as Jean Dobbs outlines in powder, which her blog, “Five Strategies for Safe Shopping in the Time of COVID, at newmobility.com/2020/04/five-strategies- is a cheap anti- for-safe-shopping-in-the-time-of-covid-19. inflammatory, and protein powder for those times your grocery How do I isolate when I need personal assistance? store may be out of If you use personal care assistance, there is no way to truly your protein of choice. For an extended Q&A quarantine yourself. All you can do is be as proactive as your with Smith, including an anti- situation allows. If you have multiple PCAs, it is worth taking their inflammatory turmeric tea individual situations and reliability into consideration so you can prioritize recipe and a healthy, non- shifts for the people you are most confident in. Whether you have that flexibility or not, perishable, cost-effective shop- make sure to communicate to your aides how important it is for them to be careful in ping list, see our online article, their personal lives and diligent about hygiene and proper COVID-19 protocol. If pos- “COVID-19 Nutrition and Shop- sible, provide protective gear for your employees and for yourself. Your PCA agency or ping Guide,” at newmobility. service coordinator may help you with this. com/2020/04/covid-19- If your homecare has been affected by this crisis, United Spinal Association wants to hear nutrition-and-shopping-guide. your story at askus-resource-center.unitedspinal.org/index.php?pg=request.

MAY 2020 29 FamilyIN THE SUMMER Fun TIME BY JESSICA FARTHING

30 NEW MOBILITY ummer is right around the cor- want to do,” says Kate. “They begged us as much as we do,” adds Kate. “We can ner and the COVID-19 pan- to let them ride up and down our lane foresee many future bike rides together demic means this year will be in the rain this morning, so we did!” as a family.” Smuch different than any other we’ve When the family tires of wheeling had in our lifetimes. There may not be around their house, they visit one of KAYAKING IN THE PACIFIC packed musical festivals or big beach the many well-maintained accessible NORTHWEST holidays, but there will still be plenty trails near their home. And they even With a blended family of five and a to do with our own families. And, who take their bikes with them on vacation. baby on the way, Dr. Brian Bowen and knows, maybe we will also be able to Last summer, they visited Lake Tahoe his wife, Brittney, rarely take it easy — patronize some of our favorite adaptive and rode the Truckee River Bike Trail. especially in the warmer months. As sports organizations before the leaves “It brings me a lot of joy to be able to soon as the weather cooperates, Brian, a start to change. ride alongside my family and go on ad- T11 paraplegic, is outside playing tennis ventures together,” says Jon. “It’s a great with Brittney and throwing footballs HANDCYCLING ON A QUIET way to connect, have fun and exercise.” and baseballs in the backyard with their COUNTRY LANE “We are very blessed to have ad- boys. The kids’ ages range from 11 to 22, Dr. Jon Porter, a T4 para, was in medi- opted two little boys that love riding and the family finds that kayaking of- cal school when a friend of a friend gave him a handcycle. He and his wife, Kate, started cycling together after ACTIVE FAMILY-FRIENDLY GETAWAYS they were first married, and the couple There are many organizations around to adapt and get back into the world made squeezing Jon’s bike into their the country that offer adaptive adven- after service is important. For example, small apartment a priority. Kate also tures for families. Here are a few oppor- the objective of the ropes course is to bought a bike, and they spent week- tunities in some iconic destinations: demonstrate reliance on other people, ends cruising on the Huntington Beach and working together. You can’t do it boardwalk and local trails in Upland, SHAKE-A-LEG all by yourself.” California. Miami’s Shake-A-Leg welcomes Eligible families and kids stay at the When the Porters adopted two boys, families, friends and athletes with dis- now 3 and 5, cycling became a family lodge in Breckenridge, Colorado, with abilities to learn how to sail, swim and access to fully accessible activities on affair, and safety is always a priority for kayak on the Biscayne Bay. “We offer the parents. Fortunately they live on a 40 acres of land. “I think it’s one of our sailing with families together. We do private country lane, so there’s lots of more valuable programs,” says Rubin. adaptive kayaking, rowing and fishing, room for the boys to practice. “And • boec.org, 970/453-6422 but it doesn’t stop there. A person can now that our boys know how to ride register to borrow equipment,” says without training wheels, it’s all they ACCESS UNLIMITED Karis Starkes, Shake-A-Leg’s water- Access Unlimited offers adapted sports director. “We believe there’s fly fishing for free, with views of magic out there in Biscayne Bay and postcard-worthy beauty in Bozeman, we want to provide an opportunity to Montana. It all started when Jesse access that.” The center is open every Alberi sustained a spinal cord injury Family Fun day and most national holidays. and his friends and family rallied to • shakealegmiami.org, 305/858-5550 get him back on the water. With their BRECKENRIDGE OUTDOOR expertise in adapting boat trips, the EDUCATION CENTER group began to add larger trips that During the summer, much of the focus included both wheelchair users and of the talented staff at the BOEC is on their family members. Now, it hosts the Heroic Military Families Wilder- about five big trips a year, and smaller ness Adventure, which brings adaptive two-day versions, that include stays in activities to military veterans and their a lodge, Polaris rides, shoots and fish- families. “We have a ropes course, rock ing. Craig Hospital in Denver is offering climbing and maybe rafting on the an adventure camp through Access Colorado River,” says Wilderness Pro- Unlimited, as well. gram Coordinator Stephen Rubin. “You • challengelimitation.org, can clearly see the value. Being able 406/219-8629

MAY 2020 31 nity. Greg Traynor, a C4-5 quadriplegic, runs the popular Accessible Hunter Facebook page, which offers advice on how to get outdoors. The page started as a website in 2010 and now has over 5,000 followers. This year, he added an Accessible Hunter podcast. Traynor says that disabled hunters become more comfortable with experience. “One of my taglines for my Acces- sible Hunter page is ‘no matter how you get there, get there,’” he says. “I hunt with a lot of people who have significant disabilities, and we just don’t think much about it anymore. We know how it works best and how to get out there.” His father taught him how to bow hunt in Pennsylvania’s bountiful game lands when he was 15, and he credits Dr. Jon Porter loves to take his sons bike riding. Shepherd Center in Atlanta, Georgia, fers an opportunity for everyone to get vorite memories is of when Brian and for his return to hunting after his 1999 spinal cord injury. “When they found out and enjoy the same activity. “We I first went kayaking together,” says out that I was a big bow hunter, they have a lake nearby, which makes kayak- Brittney. “It was just the two of us. We took me down to the gymnasium and ing so much fun,” says Brittney. “After packed a lunch, took a double kayak introduced me to shooting again with some trial and error, last year we decid- out on the river, and paddled around in adaptive equipment,” he says. ed to buy two sit-on-top kayaks because the sun.” It was also one of the first ac- The Shepherd recreational therapy they make it easier for Brian to get his tivities the couple did together after his department used a BMF trigger activa- legs situated, and to get on and off.” injury that didn’t need to be adapted. tor — a lever that makes depressing the The family usually launches from a “It helped us remember that we can do trigger easier — on a .22 rifle. Greg was dock. Brian transfers from his chair onto pretty much anything we could before inspired. “It was amazing. I learned the dock, then Brittney holds the kayak his injury.” that I could shoot again,” he says. steady while he transfers onto it. They Around 10 years later, Traynor started bring extra towels to lay down so Brian THE GAME LANDS OF the original Accessible Hunter website can avoid slivers and scratches. PENNSYLVANIA and moved back to Pennsylvania to be Kayaking is special to Brian and There is no doubt that adaptive hunting closer to family. The move allowed him Brittney’s relationship. “One of my fa- is popular in the wheelchair commu- to spend time hunting with his brother

Far left: Dr. Brian Bowen and his wife enjoy their blended family. Left: If it’s sum- mertime, you’ll likely find Bowen in a kayak.

32 NEW MOBILITY “For me, therapy happens outdoors.”

his 30-inch-wide outdoor wheelchair fits on his full-sized van’s lift. “I don’t have to trailer it, and when I travel to hunt, I can even take it inside the hotel rooms with me and charge the batter- ies like my regular everyday chair,” he says. Also, since it tilts and reclines, “I can stay in that chair all day and do my weight shifts.” Traynor prefers to hunt the game lands in his area rather than travel far on adapted hunting trips. “Now, I Greg Traynor and his wife, Beth, make the most of Pennsylvania’s natural bounty. mostly just hunt with friends and family,” he says. and nephew, as well as other long-time his rifle, shotgun and bow. He still uses What he enjoys most is the shared hunting friends. the BMF on his shotgun, but uses a sip- time in nature, far from life’s distrac- These days, Greg uses a mount de- and-puff trigger with his scoped rifle. tions. “For me, therapy happens out- signed by a welder friend that works on Traynor is especially happy that doors.”

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MAY 2020 33 Caring for Your Parents from a Wheelchair BY RICHARD HOLICKY

our parents are getting on in wheelers who have dealt with different his truck’s bucket and falling 27 feet. “I years. They’re definitely slow- issues around caring for aging parents didn’t bounce well,” he deadpans. “After ing down and in need of an while also caring for themselves and dad passed, Mom and I owned the busi- occasional hand, a need that others. Here is what they learned. ness, and she’d use me as a sounding will likely only increase with time. board. That’s when I noticed her repeat- They were there when you most needed Advising and Supervising ing herself a lot.” Ythem, and now it’s your turn to be there Christopher Finney, a 65-year-old para They’ve since sold the business. for them. This may be the most difficult in rural Kansas, manages to keep an eye “The problem is my mother is 85, thing you’ve ever done for someone on his mother as best he can. Finney extremely headstrong and often un- else. But you’re not alone. owned an electrical business with his aware of having any problems at all,” New Mobility reached out to four father prior to being knocked out of he says. “Or at least she never mentions

34 NEW MOBILITY “SHE HAS ALWAYS CARED FOR OTHERS — ESPECIALLY ME SINCE MY INJURY. TO BE ABLE TO HELP HER, NOW THAT SHE HAS NEEDS, GIVES ME MORE Illustration by Mark Weber Mark by Illustration PURPOSE EACH DAY.”

followed by surgery and then a Finney wishes he could do broken ankle, has left her more. “I feel daily frustra- too weak to saddle and tion in my inability mount a horse. So to give the physical the colt is a big pet help she needs,” he that is beautiful says. “It’s emo- to look at in the tionally drain- pasture and fun ing because to watch play. sometimes I Besides, she has have to put two other hors- my needs first. es she can ride. She has always “Now I worry cared for oth- about her getting ers — especially kicked or hurt some me since my injury. other way. I spend a I feel guilty because good deal of time worry- Christopher if I had not gotten hurt, ing about her health, as well as Finney and both our lives would have been my own. Frankly I’ve been sur- his wife, left, so different. My parents made prised at the degree of her men- feel honored sacrifices for me my entire life, to care for tal decline,” he says. “Obvious- his mom, right. especially after my injury, to ly the situation is stressful. I’m improve my quality of life.” always talking to her, listening to her, Finney focuses on the positives in his monitoring what she says, watching her situation. “We’re spending lots of time decision-making and trying to get a feel together, as well as time with her sisters for what’s going on. My mother’s not and brother, sharing meals and conver- exactly totally forthcoming.” sation. She may tell them things that she All of these issues make it hard for hasn’t told us. They’re very helpful and him to look ahead at the future discus- sometimes are a good source of infor- any problems. Needless to say, I spend a sions he knows are coming, should her mation regarding her health,” he says. good deal of time at her place, advising decision-making worsen. COVID-19 has added an extra layer and supervising.” Though Finney has two sisters, they of concern, but during the shelter- Caring for Your Parents He talks with his mother every day offer little support, leaving him to deal at-home period, Finney continues to and visits weekly to get a feel for what’s with the situation. “I’m very fortunate contact his mom daily to care for her going on in her life. “She’s been mak- that my wife is so supportive. I could physical and mental health. “My wife BY RICHARD HOLICKY ing some poor decisions lately,” he says. not care for Mom without the help of supplies her with books to read and One of her poorer decisions was not my wife, aunts, uncles and a large cir- picks up her groceries,” he says. “We calling him for help when she needed it. cle of friends,” he says, but in the end, still get together to share meals and play “She fell, but failed to activate her medi- her care falls to him. “Physically it is dominos several times a week. Mom cal alert device, not realizing she didn’t very frustrating trying to help her. If feeds her dog, cats and horses daily. It purchase the automatic alert feature. she falls, I can’t help her up, and I can’t gets her outside in the sunshine and She was angry, thinking it didn’t work. get into her home without assistance. fresh air.” Now she refuses to wear it. She also had When she had an allergic reaction to Even with the difficulties, Finney her cell phone but didn’t call my wife medicine and suddenly began having recognizes the fortunate position he’s for two hours because she didn’t want difficulty breathing, I rushed her to the in. “I feel honored to have an opportu- to bother us.” local ER, but all I could do was honk the nity to repay the love and devotion my Another poor decision was buying horn until help came. If this had hap- Mom gave me. To be able to help her, a colt. pened when she was alone, she would now that she has needs, gives me more She’s ridden her entire life, but pain, probably not be with us now.” purpose each day.”

MAY 2020 35 Tangled Up in Knots Jeremias, who she didn’t mention be- to care for my father, who should be In October 2018, Joe Jeremias’ 70-year- cause he lives three hours away, is the doing it and what we were going to do old father had a massive stroke and now third son, a C5 quadriplegic for the past in the future, between just about every- is a hemiplegic. After three months and 33 years. His mother then assumed the body in the family,” he says. “All while some rehab, he was sent home to live with role of his father’s sole caregiver, mostly we were coming to terms with my mom his wife, also 70, in his inaccessible house. due to “pride and her stubborn nature,” being terminal, that she wouldn’t be go- Prior to his discharge, a social work- Jeremias says. ing home. She died on the 31st of July.” er asked Jeremias’ mother what kind of Less than a year later, in July 2019, Throughout that month, he split his help she would need. She said none — Jeremias’ mother was hospitalized with life between sleeping on his parents’ that she had two sons who live nearby, a terminal illness. “During that month couch in New Jersey and traveling back and one of them didn’t work that much. there were a lot of arguments about how to his home in Long Island, New York. He has a beach house about half an hour from his parents’ home where he took showers and used the bathroom. “We’d made the decision to not rent out the house that summer so I’d have an accessible place to crash while I was helping my mom care for my dad,” he says. Although Jeremias had been working with his mother since January to get his father on Medicaid, she didn’t follow through, and his father was denied coverage. Ultimately Jeremias convinced his father to reapply, explaining that he couldn’t rely on his sons to take care of him. By the end of August, the family was pretty much fractured beyond re- pair. “I now have two brothers who will not speak to one another and expect me

When asked for advice about how to make a hard situation easier, each wheeler we interviewed was quick to offer what’s helped them: ARE YOU ELIGIBLE FOR AN • Take care of yourself first and find some emotional support. ACHIEVING A BETTER LIFE EXPERIENCE • Do some senior care planning well (ABLE) SAVINGS ACCOUNT? before anticipating ever needing it. • Be certain the entire family is on the same page about their role moving If your disability occurred before your 26th birthday, you may be forward. eligible to open a tax-exempt savings account that won’t affect your • Make sure parents are honest and eligibility for federally-funded benefits such as Medicaid and SSI. not hiding financial difficulties or spending issues. Funds saved in an ABLE account can be spent on qualified dis- • Accept that you can only do so ability expenses such as housing, transportation, personal sup- much because you may not always be port services, assistive technology, education, health care, and in full possession of all the facts. employment training and support. • Accept that all you can do is what you’re capable of doing. To learn more about how to open an ABLE account, visit ablenrc.org/get-started. • Do your best to maintain a sense of humor.

36 NEW MOBILITY to mediate between the two of them,” prise for Janette Lawler, a C4 quad from where she lives. “Placing her there was he says. “When this shit happens, the Denver. “We’ve always taken care of the hardest decision I ever made,” she stress is too much for most any fam- each other, so I was not thrust into this says. “But she’s 85 years old and very ily to endure. With my family, the dys- position, as some are,” she says, adding challenging due to the changes in per- function has grown to a point that no that, fortunately, her mother’s demen- sonality and temperament that accom- amount of plaster or paint is ever going tia developed slowly the first few years, pany dementia.” to be able to hide the canyon-wide gaps which allowed Lawler time to grow ac- Daughter and mother talk every day, that have been created.” customed to what her mother needs as even when it is hard for Lawler to want He wishes he could support his fa- the dementia progresses. to make those calls. “I always try to fo- ther more, but lack of accessibility gets Lawler, 54, is nearly her mother’s cus on the positives, but sometimes her in the way. His brother is his father’s only visitor at the assisted living center constant complaining gets to me and I caregiver while they wait for Medicaid to come through, and Jeremias visits on weekends when he can. “I need to rely on somebody else to get him into my ABLE ACCOUNTS HELP YOU SAVE car if I want to take him out to the mov- MONEY WITHOUT LOSING BENEFITS. ies or dinner. Otherwise all we can do is sit in his house, watch TV and order HOW CAN WE MAKE THEM BETTER? take-out,” he says. “There’s really not a whole lot I can do for him alone, which United Spinal supports the ABLE Age Adjustment Act, which is unbelievably frustrating. It reinforces would expand eligibility for ABLE accounts to allow people my own limitations. In some ways, I feel whose disability occurred before their 46th birthday to sign up for guilty for not being able to do more for these life-changing savings plans. This would allow another 6 mil- him, but at the same time it is an escape lion Americans the opportunity to open an ABLE account. from being responsible as well.” To contact your members of Congress, please visit unitedspinal. The shelter at home directive has org/save-the-able-act. To learn more about ABLE accounts, visit kept Jeremias out of New Jersey and ablenrc.org/get-started. on Long Island with wife and son. “I haven’t seen my dad in a month, and I probably won’t see him for another two. I call him every other day or so, but he’s not interested in deep conversations, especially after the stroke,” he says. “I know his twice-a-day, Medicare-funded aides are taking care of him. My two brothers are nearby and they’re making sure he gets what he needs.” As far as advice he’d give, Jeremias is stark. “Even situations and feelings that are completely unrelated to my parents’ aging have become tangled up into a knot that can never become un- bound,” he says. “All of these insecuri- ties and misunderstandings and feelings have become inexorably combined into a completely irrational perception of reality. So I would tell people to hash things out well before their parents die because if they don’t, they probably never will after.”

Try to Focus on the Positives Becoming her mother’s caregiver in her final years did not come as a sur-

MAY 2020 37 just have to hang up,” says Lawler. That’s currently a particular challenge Dealing with the psychological and for Lawler, as she spent the early period emotional aspects of her mother’s of the COVID-19 crisis in the hospital condition, which includes hallu- recovering from skin surgery. Before cinations, is understandably dif- Lawler was discharged, her mother ficult. Lawler feels she is watch- had reached the point where she ing her mother slowly slip away. needed to be placed in a full-time “We’ve been best friends my facility, and they were only able to entire life, as well as each other’s speak by phone. “It’s been a chal- emotional support, but now lenge,” Lawler reported, rather there’s not much to be optimis- emotionally. “So I’m left with tic about,” says Lawler. “I struggle phone calls and memories.” with the feeling of helplessness In the end, it’s their strong moth- that comes with not being able to er-daughter bond that sees Lawler help her to the toilet, get a sweater on through. “I love my mom,” she says. or just give her a hug when she’s having “She will always be one of the sweetest and a hard time. That is a huge part of the dif- most generous people I’ve ever known. I only ficulty of doing this from a wheelchair.” hope I can be as strong for her as she has been for me Although her situation is difficult, “you have Janette Lawler through all my challenging years.” is strong for her to find the positives in a generally negative situa- mom, as her tion,” says Lawler, who adds that some of the posi- mom has been Role Reversal tives include “living near each other so we can see for her. When Todd Whitehead became a C3-4 quadriplegic each other often, the good fortune that we found a at age 15 in 1987, his parents were his primary caregiv- decent facility within our price range and years of ers. But not long after his father died seven years ago, mostly good memories that, with help, I am learn- his mother acquired ALS, and he cared for her the best New Mobilityting to focus OCT on2014 rather 6000TRS_mm_346.qxd than on the frustration 9/26/2014 of the 9:44 AM Page 1 he could until her death four years ago. This switching present situation.” of roles was difficult for both son and mother.

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38 NEW MOBILITY “When mom got ALS, we sort of re- he died. And here I am, graduated from col- versed roles somewhat. Obviously I lege and wanting to spread my wings a couldn’t provide the physical care, bit and be free. Then mom got ALS. I so I served more as her emotional couldn’t just leave after all the years support. She’d been my caregiver she took care of me. It was a very for close to 30 years and had a difficult and stressful transition hard time giving that up,” he for both of us.” says from his home in Stephen- Fortunately Whitehead’s mo- ville, Texas. “There were things ther had a rare form of ALS that she needed to turn over to me, mainly affected her throat. “In now that I was going to be the the end she was nonverbal and main caregiver, things I would be was unable to swallow, but she responsible for, both for my care was out shopping a week before she and hers. She also had things she passed,” he says. needed to deal with, get off her chest and work through.” Being cared for by her son was particu- *** larly difficult for Whitehead’s mother because Four families, four unique situations. Our par- she wanted to be sure he was equipped to do it all. Going from ents get old, they become frail, they acquire disabili- caregiver to care ties of their own, and some of them display signs of But also, caregiving had become her identity. recipient was “When I first got hurt, my mom assumed full tough for Todd dementia, but all of their warranties expire. Now responsibility for my care,” says Whitehead. He Whitehead’s they need us, whether they know or admit it. None went to college, he and his parents built a house mom. of this is easy, especially as we age on wheels. But and moved in together, and their lives became in- who better to figure out what kind of help and how tertwined. “Things went along just fine until they best to deliver it? Who are we to say no or reject an didn’t,” he says. “Dad got sick with Alzheimer’s and opportunity to give, to give back? We need the expe- was in a nursing home for about six months before rience of giving extravagantly. Glide Again. From Home.

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MAY 2020 39 March.indd 1 4/12/20 4:18 PM IN THE By Teal MEDIA Sherer

STARDOM DOESN’T SOLVE HIS PCA WOES t might seem like Steve Way is living the dream. Last year, he gained renown Ias the feisty, foul-mouthed best friend in Hulu’s critically-acclaimed Ramy, and he’ll star in a second season later this month. Additionally, Way does stand-up comedy, is a public speaker and is developing a series for Apple TV+. But for more than 800 days, Way has been fighting for his life in a nonstop battle with Horizon NJ Health, a Medicaid provider. Born with muscular dystrophy, Way is asking for 84 hours a week of personal care assistance — 12 per day — instead of the 60 hours a week he currently receives. “My parents are getting older, and my girl- Steve Way and Ramy Youssef are best friends in real life as well as on screen. friend works all day,” says Way. “Also, my life doesn’t stop on the weekends.” character goes by the same name) upright on a toilet. Humming For Way, being alone could kill him. He needs assistance with a tune, Steve finishes his business, and Ramy wipes him. “Don’t everyday tasks that most people take for granted. We see this half ass it — I know when your heart is not in it,” instructs Steve. reality onscreen in Ramy. The cold open for the second episode Moments like these fill the series and feel undeniably human. takes place inside a bathroom where Ramy holds Steve (his “That is why the show resonates with people,” says Way. “It’s authentic.” Created by and starring stand-up comedian Ramy Youssef, Ramy has been praised for its portrayal of American Muslims. Youssef won a Golden Globe for his performance in the show. Like their characters, Youssef and Way are best friends and even met in a similar way. “I had just started fifth grade, and it was my first time at a new school, and 9/11 happened,” explains Way. “Kids hear the news and they hear parents talking, and they see Ramy and start making assumptions. For me, as the new kid, it was hard to make friends, especially being disabled. We didn’t know it at the time, but doing the show really made us realize that we bonded over the shared connection of being misunderstood.”

Real Life Goes On After countless phone calls, letters, assessments, faxes and even taking Horizon NJ Health to court, Way, who also has Steve Way trouble swallowing and is at high risk of aspirating on his own

40 NEW MOBILITY “My life doesn’t stop on the weekends.”

spit without assistance, has gotten nowhere. According to Horizon NJ Health, he’s not disabled enough to qualify for Steve Way is finding success on the screen, but struggles to get the PCA more hours. “I’ve lost friends from the same lack of care hours he needs in real life. I’m currently facing,” says Way. PCA hours are determined by guidelines that determine how disabled someone is. “Not being able to go to Do you Believe in Magic? the bathroom by yourself gives you a certain number of hours, but needing to use a diaper will get you more. Bowel & Bladder Basics are our Business! And no, I’m not wearing a diaper,” says Way. “If you have a trach, you’ll get Urological Supplements Suppositories more hours than someone like me who Cran Magic + ™ The Magic Bullet™ uses a non-invasive ventilator.” Besides bladder, kidney & urinary health. safe & sure! Faster acting, this, no other factors are considered, water soluble suppositories. and at no point does the person who determines the allotment of hours even Mannose Magic™ maintain a healthy urinary tract- flush Bowel Supplements meet or speak with the client. “We can’t away E.coli. Magic Cleanse™ even FaceTime,” says Way. “In the most promotes fuller movements

Photo courtesy of Hulu dehumanizing fashion, your entire life is with greater ease Steve Way and Ramy Youssef are best friends in real life as well as on screen. reduced to a couple pieces of paper with (and less time). a rubric created by nondisabled people, who could never fathom my daily strug- nzyme agic™ gle for survival.” E M better digestion= better elimi- Despite this, Way considers himself nation. lucky because he lives in a state, New Jersey, that is known for being generous with PCA hours. “It’s so horrible that I have to say that I consider myself lucky for getting the sub-minimum care to sur- vive, but I have friends who only get five hours a day,” he says. With the presidential election loom- Mention This * ing, Way advocated for Medicare for Ad and Receive All and Bernie Sanders for president. “My goal is to use my growing platform 5% OFF to bring awareness to this and to get in front of lawmakers,” he says. While these issues keep Way up at www.conceptsinconfidence.com night, he is looking forward to all 10 2500 Quantum Lakes Dr. #214 episodes of the second season of Ramy Boynton Beach, FL 33426 being released on May 29. “People are (800) 822-4050 going to talk about it,” he says. “It brings *one time discount per customer our friendship to a whole other level.”

MAY 2020 41 DAILYBy DILEMMASSheri Denkensohn-Trott

There is no ASKING FOR HELP FROM A STRANGER “ specific formula Q. I am a quadriplegic woman, and I use ost people with disabilities a motorized wheelchair for mobility. I will need help from a for requesting don’t have the muscles to control my Mstranger at some point in help that will trunk or enough arm strength to push their lives. While some people you myself upright in my chair. Occasionally, encounter may reflexively heed your guarantee a I lose my balance and my body slumps call and jump to action, it’s unrealistic response from a to one side. When that happens, I am to assume that a random stranger will person you don’t unable to reach the controls for my chair provide help when it is asked for. and cannot move it — I need someone There are countless reasons a know.” to push my shoulder back toward the request for help might be denied center of the chair so I can sit up straight or ignored. Someone might not again. This is not a problem when I’m know what to do and may feel with people I know, but sometimes I nervous. They may fear hurting you reach that cup of coffee and bring need to ask a stranger for help. inadvertently, or they simply may be it to the table for me?” — but that is Recently, I was crossing the street in a hurry or having a bad day. still no guarantee that the individual in my neighborhood, and just as I rode I wouldn’t assume that the into the crosswalk, I lost my balance in will respond accordingly. Consider young man was fearful of people my chair and my body slumped to the also whether the person you’re with disabilities. Assumptions right. Alone, I had no choice but to ask addressing can actually hear you. So are hypothetical explanations or a passerby for help. I called out for help many individuals wear earbuds these unproven beliefs, and they are not to the first person I saw crossing the days that catching the attention of always accurate. After all, many street, a young man, but he didn’t stop. a passerby can be difficult — which individuals with disabilities feel Soon after, a couple who appeared to be is frustrating even in nonemergency strongly about being able to do things in their early 60s came by, and I asked situations such as requiring help to independently and don’t like it when them for help. They were receptive, open a door, fill a cup at a restaurant, others assume help is required and asked what to do and then assisted or reach something off the floor. intervene without being asked. For without hesitation. In the event that you do receive After arriving safely at my instance, you may not like it when help, it is important to thank the destination, I reflected on the encounter. someone tries to push your chair helper for the assistance and not Why wouldn’t the younger guy help when you can drive it yourself. dwell on the intent behind it. Most me? Was he scared of individuals There is no specific formula for people with disabilities don’t want with disabilities? Did he not want to requesting help that will guarantee assumptions to be made about what touch a woman? Was there something a response from a person you don’t they need. In turn, the fairest thing unique about the older couple? What know. When calling out for help, it to do is to avoid making assumptions should I make of the situation? Is there may be useful to briefly specify what about others and just be thankful for something I could have done differently? you need — “Excuse me, can you getting help from a stranger.

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NewMobility.indd 1 3/27/20 10:46 AM ERVIN By Mike Ervin “On Thanksgiving you eat turkey, and on the Fourth of July you have HAPPY — OR SAD? — RARE DISEASE DAY a barbecue. But Another Rare Disease Day came and crippled can be accurately character- what do you eat went, and once again I didn’t do a ized as a disease. Is it rare enough to on Rare Disease damn thing to acknowledge it. I just let make the cut? Because again, in my it pass like an ordinary day like I always mind a rare disease is something like Day? As far as I do. And I feel terribly guilty about that. scurvy. I’ve never known anybody with know, there isn’t Rare Disease Day has happened scurvy, so it must be pretty rare. But on the last day of February every year I’ve known lots of people with spinal anything like a since 2008. As it approaches, I get muscular atrophy, which is what makes traditional Rare all anxious and intimidated because me crippled. Disease Day I feel like I’m supposed to be doing According to the Rare Disease Day something in observation of it, but I official website, a rare disease affects casserole.” don’t know what to do. It’s kind of like less than one in 2,000 people. I guess Presidents’ Day in that way. I prefer SMA qualifies as both rare and a dis- holidays where everyone knows what ease, according to Cure SMA, an orga- you’re supposed to do. Like on the nization that sends me a lot of emails. Fourth of July, you shoot off fireworks, This is a great stroke of luck for them and on Thanksgiving you eat like a because it creates a golden fundraising say, “Hate the sin, love the sinner.” damn pig. Everyone knows what you’re opportunity. One of their recent emails Maybe this will be a case of, “Hate the supposed to eat on normal holidays said an excellent way for me to “show disease, love the diseased.” like these, too. On Thanksgiving you my power” on Rare Disease Day would So that makes me think that what I eat turkey, and on the Fourth of July be to donate to them. Another recent ought to do for next year is organize a you have a barbecue. But what do you email said an excellent way for me to massive Rare Disease Pride Parade. But eat on Rare Disease Day? As far as I “celebrate” Rare Disease Day would be might that be too over-the-top? It’s one know, there isn’t anything like a tradi- to donate to them. thing to go around being all proud of tional Rare Disease Day casserole. But is celebrating the right yourself even though you have a rare I feel compelled to somehow mark approach? Shouldn’t we people with disease. But it’s quite another to embla- Rare Disease Day because I assume rare diseases be mourning instead? zon the names of our rare diseases on when those who thought it up talk Aren’t people with rare diseases sup- an armada of colorful floats being led about people with rare diseases, they posed to be suffering 24/7? Isn’t that through the city streets by a marching think they’re talking about me. I’m not the meat of our sales pitch? If people band. Is the undiseased majority ready sure I agree. First of all, I don’t think who don’t have rare diseases see us all to accept such an audacious display? it’s accurate to call that which makes out celebrating, won’t it negate all that And who among them would come out me crippled a disease. I don’t feel like precious negativity? to witness this parade? Our first obsta- a diseased person. To me, a disease is On the other hand, why should cle would be to convince everyone that something like typhoid. And to me, a we of the rare disease community even though we have rare diseases, we diseased person feels miserable all the be ashamed of ourselves? Maybe it’s aren’t contagious. time. But way more often than not, I high time we shed that albatross and Can you see now why Rare Disease feel perfectly eased. declared our pride in who we are. And Day gets me all tied up in knots? It But OK, just for the sake of advanc- maybe the undiseased majority will be makes me want to hide under the bed ing this discussion, I will concede sharp enough to embrace the subtlety until it goes away, as if I’m trying to the point that that which makes me of our message. I’ve heard Christians escape somebody with a rare disease.

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EMPLOYMENT OPPORTUNITY Where Will you go in your Job Title: Americans with Disabilities Act (ADA) Coordinator (Part-Time) Description: The Americans with Disabilities Act (ADA) Coordinator will build upon and administer the ADA accommodation program from start to finish. The position will also be involved in the Light Duty/Return-to-Work program. Other duties include but are not limited to the following: Identifies and performs outreach to employees possibly requiring accommodations; educates management and employees on the rights and duties under the ADA; coordinates with management and employees to develop and provide employees effective and reasonable accommodations; develops written materials and other informational pieces regarding the ADA program; develops and maintains internal measures to track ADA status and compliance and maintains and documents records of all disability and accommodation issues ensures compliance with applicable our all-terrain chairs are fully equipped with WheeEEZ® polyurethane laws, regulations, and policies; assures that workers with disabilities are provided wheels, which are specifically designed to navigate challenging terrain effective and reasonable accommodations allowing them to work productively like soft sand, mud, gravel rocks etc. WheelEEZ® wheels also perform and safely; assure Township-Sponsored activities, Township Facilities and events great over hard surfaces such as concrete and asphalt. address accessibility and accommodation concerns. Requirements: Bachelor’s degree in social sciences, human resource management, business administration or related field and two years of personnel administration experience are required (or a combination of education and/or training and/or experience which provides an equivalent background required to perform the work of the class); a minimum of eighteen (18) months of experience in a position that involved evaluating and administering reasonable accommodation issues subject to the ADA or §504 and completion of a course on barrier-free design or ADA accessibility guidelines which was sponsored or approved by the Photo courtesy: havewheelchairwilltravel.net New Jersey Department of Community Affairs or a department which oversees the Uniform Construction Code in any other State, the American Institute of noW eVeryone iS inCluDeD!! Architects, the Paralyzed Veterans Association, or the United Spinal Association, Enjoy your favorite beaches, parks, trails, fishing spots, picnics in within twelve (12) months of hire. the park, or just experience the splashing of water over your body. ™ Salary: DOQ Sandpiper will take you there with ease. Hours: Part-Time, three days weekly (not to exceed twenty one hours per week). Website: wheeleez.com Contact us today Phone: +1 707 751 3999 Apply: Send resume or application to: Ms. Braedon Gregory, HRIS Coordinator, Human Resources Department, Township of Montclair, 205 Claremont Avenue, email: [email protected] Montclair, New Jersey 07042 or email: [email protected] Closing Date: Job posting will remain open until position is filled. GO ANYWHERE WITH

MAY 2020 45 MARKETPLACE Did Your Address Change ?

If so, please provide New Mobility with your updated information so you will not miss a single issue.

Full Name, Street Address, City, State & Zip Code are needed for both the old & the new address. Please allow 6-8 weeks for this change to be processed.

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

Keep your essentials on hand while on the go with this great backpack! • Works with most chair styles • Easy-open zippers • Ample storage • Mesh pockets great for water bottles or other often-used items • Durable construction • Helps spread United Spinal Association’s active lifestyle message

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46 NEW MOBILITY CLASSIFIEDS

FOR SALE LEGAL CA ROADTREK RV WITH BRUNO In furtherance of Mobility Works’ JUMP START YOUR VIBERECT LIFT 4 SALE. CALL 650-355-6242 commitment to improving acces- • Treats men with [email protected] sibility, we are pleased to announce erectile dysfunction we have agreed to the nationwide SEX LIFE PACESAVER Power Wheelchair modification of a number of our • Treats SCI men 600 pound capacity. like new never policies regarding adaptive devices. with ejaculatory been out of house $7500 new will For additional information regard- dysfunction. take $2500 or best offer. Call 901- ing these changes, please see 598-6878. Orion Medical Group, Inc. the class notice for Community (Full D.M.E. Pharmacy Specializing S.C.I) Resources for Independent Living Galveston, TX: One bedroom, Tel. 714-649-9284 / 1-888-64-ORION (67466) / Fax. 714-594-4038 v. Mobility Works: http://bit. [email protected] furnished, ground floor condo, ly/3d5MwO4. wheelchair accessible and barrier www.medicalvibrator.com free. Roll in shower, wall sink, roll- Do you or your loved one need under kitchen sink and cooking legal assistance for injuries resulting surfaces, washer/dryer combo. from an accident or medical mal- Resort quality pools, gym, located practice? We are here to assist you across the street from Babe’s Beach. in finding the best lawyer for your 172K Contact: susanna@susan- specific case. Call us 1-888-888- namayberry.com. Also listed as a 6470. www.findinjurylaw.com five star Airbnb vacation rental “The Accessible Dawn Beach Condo”. VACATIONS If you have questions regarding your Veterans Benefits Queen Alternating Pressure Bed Voted “Best Accessible vacation or benefits that your family members may be entitled to, by Assured Comfort - Excellent Ever” (by those who stay here). VetsFirst can help you. Condition! (2) Tilt-in-Space Visit https://shipwatch108.weebly. Permobil wheelchairs, TiLite man- com/ ... read the reviews! H ual wheelchair, RAZ shower chair, www.vetsfirst.org/ask-vetsfirst GOMOBILITY travel shower chair. Costa Rica! Accessible 2+ bed- SOUTH FLORIDA! 954-494-1377 room house close to beach. Large bathroom, roll-in shower, adjust- 2010 Toyota Sienna LE. Braun able bed, pool with pulley lift, ramp van with 54,116 miles. Asking AC, wifi. Accessible taxi service. $22,500. Call 781-595-7976 or Recommended for adventurous e-mail [email protected] for travelers. Sleeps 7. 952-270-3027 PATHWAYSTOEMPLOYMENT more details. www.vrbo.com/925788

New Product, Electric and Manual Florida Keys! Accessible 2 /bed- United Spinal Association’s Pathways to Employment (PTE) Wheelchair seat pouch, $14.99 visit room Waterfront Home, Large program supports the pursuit of new job opportunities and www.cushpocket.com” Bathroom with Roll-In Shower. a successful career for people with spinal cord injuries (SCI) Spectacular View, Resort Amenities by providing the tools and support necessary to successfully Shower Curtain Sealer Products. included. 561-627-1941. www. overcome barriers to gainful employment. Collapsible Water Dam, Seal-to-wall placidaccess.com Shower curtains, Extra long shower www.unitedspinal.org/pathways-to-employment/ rings. www.StayDrySystems.com New Zealand Accessible Vehicle Hire. New Zealand disability Nationwide Wheelchair Van vehicles, hand control cars, left foot Rentals. For the next time you accelerator cars for hire. Explore want to get out, vacation, doctors New Zealand – we make it easy! We Meet New Member Castle Andrews appointment, or try before you buy. are happy to pass on our former Learn more at www.BLVD.com clients’ recommendations of acces- Age 61, from Houston, Texas sible activities and accommodation. Multiple Sclerosis Over 1500 wheelchair Accessible See www.freedom mobility.co.nz Vehicles for sale at one website. A Former Owner/Operator in the complete selection of New, Used Orchard Beach, Maine First floor Oilfield Industry and Pre-Owned wheelchair vehicles entirely wheelchair accessible. from dealers and private parties House sleeps 10. Visit www.dune- Why I joined United Spinal: I found United nationwide. Check it out today. grasscottage.com Spinal Association while doing some www.blvd.com online research and discovered there were others who Ocean-front condo, wheel- knew things I didn’t, who had been in this lifestyle for New LEVO standing electric wheelchair friendly, sleeps six, pool, a while and knew some of the answers to life. If I could chair. $19,950. Call 530-906-5553 boardwalk to beach. Rents daily, weekly, monthly. St. Simons Is., have jumped up and taken off running, I would have. I 08 SiennaLE with side ramp GA. [email protected] 419- needed United Spinal, and they answered the phone and pristine condition. Was 43k asking 569-6114. showed interest in me ... I’ve been in awe ever since. $25,333. 414-232-3210 Cape May farmhouse near beach. Can’t live without: I never thought I would be saying this Used Power Wheelchairs: First floor entirely wheelchair acces- Like-new, 75% savings, $1195+. out loud, but I enjoy my power wheelchair. It has given me sible. Sleeps eight. Visit www. the ability to not just get up every day but also to get out. I Warranty, satisfaction guarantee. beautifullyaccessible.com for more We ship anywhere. Quality first, info and reservations. can go to the park, store and other places. I can live outside since 2005. Used-Wheelchairs-USA. the four walls of this challenging life I’ve been dealt. com. 540-721-3327. To place your classified ad or to get information on advertising rates, call: 800-404-2898, ext. 7253 or Meet other members or join United Spinal at unitedspinal.org email your request to [email protected]

MAY 2020 47 WHEELCHAIR LAST CONFIDENTIAL

WORD BIRTHDAY PRESENCE This morning was my partner’s birthday, and we went out to celebrate. Toward the end of our meal, a woman walks up to our table, sets her arm on my fiancé’s shoulder and says, “I’ve just got to tell you how impressed I am with you two.” At this point, as two wheelchair users, we Instagram Follow give each other a knowing look and brace our- #infiniteinclusion selves for whatever inappropriate comment this woman is about to make. Then she says, “So many young people are always on their phones, but I’ve been watching you, and you two haven’t touched your phones once. You’ve just been so into your conversa- tion with each other. I’m very impressed! You don’t see that these days.” We get inappropriate disability-related comments veiled as “compli- ments” all the time when we’re out, but we’ve never actually gotten a genu- ine comment like that. I was stunned. While the birthday man sat speechless and in shock, I sputtered, “Oh thanks. We just really like each other.” As she walked away, we started laughing so hard that we were actually crying at our table. I wanted to take a picture, but my stunned partner told me I couldn’t touch my phone after what she just said. So we sat there with tears streaming down our faces. New Mobility is now on Instagram! Follow us @newmobilitymag The future Mr. and Mrs. E. Namerd

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48 NEW MOBILITY DO YOU HAVE A RELIABLE SOLUTION TO YOUR BOWEL PROGRAM?

Use CEO-TWO® Laxative Suppositories as part of CEO-TWO works reliably within 30 minutes. These your bowel program. These unique CO2-releasing unique suppositories are even self-lubricating, suppositories allow you to control your bowel making their use as easy and convenient as possible. function and prevent constipation and related problems, such as autonomic dysreflexia. Regain • 3 year shelf life confidence in social and work situations by • Reduces bowel program time to under 30 minutes avoiding embarrassing accidents with CEO-TWO! • Water-soluble formula • Does not cause mucous leakage Many laxatives and suppositories are not reliable • Self-lubricating and are unpredictable. Having secondary bowel • No refrigeration necessary movements when you least expect it with such • Individually wrapped and easy to open products is not at all uncommon. • Unique tapered shape makes retention easier, providing satisfactory results every time

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