Person of the Year: Andrea Dalzell

UNITED SPINAL ASSOCIATION’S

life beyond wheels Person of the Year: Andrea Dalzell

newmobility.com JAN 2021 $4 a special thanks to those who support

PLATINUM

GOLD

SILVER

BRONZE

EXECUTIVE

full color

black

w hite PREMIER

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. Aquila’s SofTech Healing Results Amaze the Medical Community

SofTech Cushion Completely Self-Contained with Wireless Remote

Shown without cover

Medicare HCPCS code E2609 AquilaCorp.com 8667829658 JUNIPERunltd_NewMobility_ad_ 7.875x10.375-2.indd 1 12/16/20 11:43 AM CONTENTSIssue 327 - January 2021

life beyond wheels

COVER STORY PERSON OF THE YEAR: 20 ANDREA DALZELL All Andrea Dalzell ever wanted was to be a hospital nurse. It took a global pandemic to provide that opportunity, but Dalzell fearlessly seized it and blazed a trail for other wheelchair users to follow. For her tenacity, vision and passion, we are honored to introduce Dalzell as our

2020 New Mobility Person of the Year.

Cover and Contents Photos by Stacy BE Photography

FEATURES DEPARTMENTS

16 THE LAST BOOKSTORE Josh Spencer is 4 BULLY PULPIT proprietor of one of the nation’s largest and most interest- 5 BEHIND THE STORIES ing new-and-used bookstores. DAVID RADCLIFF chronicles 6 Spencer’s path from beach bum to business owner. SHARE 8 POSTS 10 UNITED NEWS 27 WHEELS ON CAMPUS New Mobility suveyed America’s top universities to find out which were 12 TECHNOLOGY best for wheelchair users. Using that data, we compiled the 14 HOW WE ROLL most in-depth college guide ever written for our community. 34 RESEARCH MATTERS 37 ERVIN For TIM GILMER and 30 SWOLLEN JEWELS 39 CLASSIFIEDS many other male wheelchair users, epididymitis — an infection affecting the testicles — is the uninvited guest that 40 LAST WORD keeps coming back in a most sensitive place. life beyond wheels

BULLYBy Ian PULPITRuder

NEW MOBILITY IS THE MONTHLY MAGAZINE OF UNITED SPINAL ASSOCIATION

PRESIDENT & CEO: VINCENZO PISCOPO VP OF PUBLICATIONS: JEAN DOBBS THE FIRE RISES I am thrilled with the selection of Andrea quick search of FoxNews.com turns up 369 EDITORIAL Dalzell as New Mobility’s Person of the mentions. PUBLISHER: JEAN DOBBS Year. As Teal Sherer writes in this month’s Enter Dumpster Fire PPE Edition. EXECUTIVE EDITOR: JOSIE BYZEK cover story, Dalzell’s story centers around The adorable anthropomorphic mask- EDITOR: IAN RUDER many of the events and issues that defined wearing dumpster is the progeny of Truck ASSOCIATE EDITOR: SETH MCBRIDE 2020, and she is a compelling and tenacious Torrence, a Los Angeles-based artist known EDITOR EMERITUS: TIM GILMER advocate who embodies the best of our for his cute, simple creations. Torrence SENIOR CORRESPONDENT: BOB VOGEL community. gave birth to the original Dumpster Fire in CORRESPONDENT: AARON BROVERMAN Honestly, as we assembled this issue and GIF form in 2016 and looked back on the year has spawned various CUSTOMER SERVICE that was, it struck me merchandise and some that she is too good for novel variations over the Toll-free 800/404-2898, ext. 7203 2020. A year as infamous past four years under as 2020 doesn’t deserve his brand, 100% Soft. ADVERTISING SALES her or any of the other Torrence introduced 718/803-3782 candidates we consid- PPE — my nickname for MANAGER, CORPORATE RELATIONS: ered. As I thought about Dumpster Fire PPE Edi- MEGAN LEE, EXT. 7253 it, I wondered: Who, or tion — early in 2020 in AD MATERIALS: DEANNA FIKE, EXT. 7250 what, would be a better response to the pan- emblem of the year we demic. PRODUCTION can’t wait to forget? No, PPE is not a PRODUCTION MANAGER: DEANNA FIKE That’s when I discovered Dumpster Fire person, and no, PPE doesn’t fit our crite- PPE Edition. Scholars are still debating the ria for the annual honor, but it does have CIRCULATION origins and etymology of “dumpster fire,” wheels and is a proud proponent of wearing CIRCULATION MANAGER: but according to NPR, Urban Dictionary a mask — a key issue for our community. BEVERLY SMITH had a working definition as early as 2008. And seriously, I challenge you to come up Merriam-Webster was late to the party with anything — human or not — that better POSTMASTER: Send address changes to New as usual, but finally included the phrase in embodies what we just went through. Mobility, 120-34 Queens Blvd, #320, Kew Gardens NY 11415. Subscription rates: $27.95/year; $35.95/ March 2018: The only argument against PPE that I will year in Canada; $67.95/year international via Dumpster fire (noun, U.S. informal): an even deem worthy of addressing is that it airmail. New Mobility (ISSN 1086-4741), Volume 31, Issue 327, is published monthly by United utterly calamitous or mismanaged situation or is too cute for such a hellish year. And if I’m Spinal Association, 120-34 Queens Blvd, #320, occurrence: disaster. being honest, I can’t argue. Kew Gardens NY 11415. Copyright 2021, all rights reserved. Reproduction without permission of any In the interim, an animated GIF of a fire PPE is too cute for 2020. material contained herein is strictly prohibited. We raging in a large, blue dumpster captivated But after all that we’ve endured, I think welcome comments; we reserve the right to edit the hearts and minds of internet users submissions. we could all use a little cute in our lives. around the world. The 2016 presiden- Periodicals postage paid at Flushing, NY PPE may not be the hero we want, but as and additional mailing offices. tial election elevated the GIF to the rare we head into the unknown of 2021 and meme-celebrity status reserved for all-time beyond, it is the hero we need. legends like the Rickroll. Today the phrase is If you’d like to own your own version of www.newmobility.com commonly used and accepted. The New York PPE, or check out Torrence’s other creations, www.unitedspinal.org Times published it in a 2018 headline, and a visit his site: 100soft.shop.

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

When Teal Sherer wrote her first article for New Mobility back in 2007, she was an up-and-coming actor who wasn’t sure she CONTRIBUTORS saw a future for herself in writing. Thirteen years later she has KIM ANDERSON • CHRISTIAAN BAILEY an impressive acting resume, a regular column in our maga- LAWRENCE CARTER-LONG zine and, as of this issue, her first published cover story. What MICHAEL COLLINS • RORY COOPER changed? “As I’ve gotten older, I feel like I have more I want DEBORAH DAVIS • JENNIFER FRENCH to say,” she says. “Writing gives me a great excuse to connect ALEX GHENIS • RICHARD HOLICKY with other people and take what I’ve learned and apply it.” GARY KARP • PAULA LARSON The same wit and insight that made her hit series, My Gimpy REGAN LINTON • LILLY LONGSHORE Life, so enjoyable brings her prose to life and results in a fun KATE MATELAN • BEN MATTLIN read that gets below the surface of whatever she is covering. ASHLEY LYN OLSON • KENNY SALVINI ERIC STAMPFLI • MITCH TEPPER ANTHONY TUSLER • KIRK WILLIAMS After a year in which Tim Gilmer didn’t author a single ar- CORY LEE WOODARD ticle for New Mobility, it feels good to have our editor emer- LOREN WORTHINGTON itus back in our pages. His articles have been an intrinsic part of our magazine since 2000, but he retired in 2018 and spent the last year assembling NM’s excellent college guide, Wheels on Campus. You’ll see what took him so long to re- WEB PARTNERS turn when you read an excerpt from the guide and then his BACKBONES story on epididymitis — a type of inflammation common in CURB FREE WITH CORY LEE men with SCI. When I asked him if it felt good to get back ROLLIN’ RNS in the swing of the monthly magazine, he laughed. “I’m not ROOTED IN RIGHTS quite swinging,” he said. SPINALPEDIA SPIN THE GLOBE

David Radcliff will humbly tell you he is surviving the pan- FEATURED WEB PARTNER: demic by keeping safe and busy, but his idea of busy may be SPINALpedia is a social mentor- more extreme than most. A writer and producer, Radcliff is ing network and video archive pushing the entertainment industry for more accurate and that allows the spinal cord injury visible representation of disability and diversity. In addition community to motivate each other to writing for season one of ABC’s The Rookie and working with the knowledge and triumphs gained from individual experiences. on a yet-to-be-released Netflix series from President Barack spinalpedia.com Obama and First Lady Michelle Obama’s Higher Ground Pro- ductions, he serves in the Inclusion & Equity Group at the Writers Guild of America, West, the Think Tank for Inclusion and Equity, and is a board member for the Los Angeles chapter of the New Leaders Council. Keep your eyes peeled for a top-secret project he’s developing built on his own material. UNITED SPINAL BOARD OF DIRECTORS: unitedspinal.org/our-story Please send queries, manuscripts or feedback to Ian Ruder: [email protected]

JANUARY 2021 5 UNITED SPINAL ASSOCIATION’S

CAN WE SHARE TRAVEL YET? “You cannot be

careful enough!” life beyond wheels

OCTOBER 2020 Not Their Problem: My worst ‘Return to Accessible Travel’ experiences flying have been with newmobility.com OCT 2020 $4 American Airlines. They seem to have Mask Up: Though I won’t be flying a “not my problem” attitude that is until there is an approved vaccine, written into their policy. It makes it so road trips are still fairly safe, if you the customer service agents on the carefully follow CDC guidelines. Mask ground can’t do much for disabled up, social distance, frequently wash passengers. hands and sanitize hard surfaces. Emily McQueen Michael Gilbert Instagram Facebook

A Simple Solution:Simply let people Be Careful: The travel issue is very stay in their wheelchair with dignity. good, and certainly reinforces my own Stow an aircraft seat. This eliminates went to full-on power about 10 years conservative views on the matter, boarding, disembarkation, and con- ago. Repeated rotator cuff tears and which are those of a 75-year old male nection delays. It serves all passengers surgeries helped, but my surgeon with a C3 spinal cord injury: You can- better together, more profitable to finally just said, “Look, I’ve been telling not be careful enough! airlines — saves fuel by pushing to you for years, but now, you’ve abso- Richard Addison Dey make up time from leaving gate late. lutely got to get motorized — I can’t Newmobility.com Wheelchairs are not luggage! do any more for that shoulder.” I was Mark E. Felling bummed (I’m a para since birth), but ‘American Airlines Denies Access Newmobility.com now I’m sorry I didn’t do it sooner! to Power Wheelchair User’ Editor’s Note: As of November, Jacquie Tellalian Avoid Regional Airlines: I’m very sor- American Airlines has revised its Newmobility.com ry this happened to John. He’s certainly policy to allow for the weight of most an experienced and responsible traveler. power wheelchairs. See newmobility. Options are Good: I’m 67 and have I’ve been planning trips for persons with com/2020/11/american-airlines- been a manual chair user since ’88 and disabilities since 1992. When a client reverses-wheelchair-weight-limit- had to reluctantly opt for the power as- has a large power chair and lives near policy/for more details. sist ($7,000, too, yikes!!). Since I was still a regional airport, I highly recommend working, Medicare and my insurance that they drive to a larger airport where ‘Embracing Power’ said “OK.” It’s nice to have the option of they can fly on a large aircraft. Using Lose-Lose: My shoulders are killing both. I can still throw my wheelchair in regional airports often means having me after 18 years in a manual, but I’m the van and my shoulders feel much less their wheelchair dismantled in order to too scared of getting lazy and fat in a pain. I typically use the SmartDrive for fit into the hold and this is where major power chair. So you sacrifice shoulder long hauls down equally long hallways, damage can occur. Especially when problems for health issues like obesity. or hauling grandkids around the yard. crew attempts to put the pieces back Damn, it’s a lose-lose. It’s nice to have the option. together. While I do not have a large Max Millione Tom McNally power chair, I still avoid American Eagle Twitter Newmobility.com [regional airline] like the plague! Correction:NM inadvertently referred Debra Kerper, Easy Access Travel Full-On Power: Add me to the list to the SmartDrive as the Smart Wheel Newmobility.com of reluctant manual users who finally in the October issue.

6 NEW MOBILITY UNITED SPINAL ASSOCIATION’S Adapted Esports Equipment Repair A Great Romance FALL 2020 The Pandemic: Struggle, Resilience and Wheels on Campus Unexpected Gifts In November, NM released its free digital guide to wheelchair-friendly colleges, Wheels on Campus. See page 27 for an excerpt, and visit newmobility.com/ wheels-on-campus to view the digital edition or download the PDF. Join the con- life beyond wheels versation about the guide (excerpted below) on Facebook.

Almost makes me wish I was starting my college career over — almost! FROM NEW MOBILITY MAGAZINE AND UNITED SPINAL ASSOCIATION WHEELS onCAMPUS Kathy M. Stice A GUIDE TO WHEELCHAIR-FRIENDLY HIGHER EDUCATION

life beyond wheels I graduated from Fashion Institute of Technology in 1985. The school newmobility.com NOV 2020 $4 was accessible, with elevators and ramps, but I struggled more with the people. It was a different generation for the disabled — glad to see a lot of inclusion on these campuses! Laurie Perlongo Zappulla

I graduated from Michigan State University. The campus is wheelchair-friendly, and the community is inclusive. The MSU Resource Center NOVEMBER 2020 for Persons with Disabilities is awe- ‘Life in 2020’ some at making sure every Spartan has what they need to succeed. “Wish I’d known this I Relate: I love the touching cover Katie Feirer photograph! Kudos to Anthony for information 20 years stepping up to the plate, for being a real I graduated in 1971 from UNLV. Most ago.” — Dave Riley dad in a real-world situation. He’s met of my classes were on the second the challenge many parents face, while floor. No elevator. My wife was a fierce not letting his own challenges slow him advocate and managed to get an exter- Every college should be wheelchair- down one bit in his love for Mya. nal elevator installed. At the time, I was friendly in this day and age. Mary Ellen Pataro only wheelchair student, and there Shirley Kologinczak Kent, New York was one professor in a chair. Billy Lee Sharkey That’s depressing. Edinboro Uni- Top Marks: Excellent edition this month. versity (Pennsylvania) used to be Well done and important. Thank you. UNLV is an excellent school for ranked pretty high in terms of acces- Richard O. Salsgiver, Professor Emeritus students with disabilities. Campus is sibility. It’s not even on this list. California State University, Fresno totally accessible, including the gym Keith Piskur and pool in the Wellness Center. ‘How to Get Your Old Equip- The university also has a wonderful I am shocked that Ohio State Univer- ment Running Like New’ Disability Resource Center. Friendly sity is not included in the top 10 or atmosphere, and all of Las Vegas is very 20; I know they work hard to support Size Matters: Going from a 4-inch to disability-friendly. ... Billy Lee Sharkey, and include disabled students. a 5-inch caster only increases dump by we really appreciate your story and Bob Taylor half an inch, not the full inch of differ- your wife being such an incredible ad- ence. Half of the difference is below the vocate. Every major change has a first Editor: Bob Taylor, we plan to expand axle where it increases front-end height. step. You and your wife made that step. the guide and will reach out to Ohio The other half is above the axle. Don’t Your service is paying forward more State again. Many fine schools were ask me how I learned that. than you can imagine. Thank you. unable to respond to us, due to the Toby Potts Protect People with Disabilities upheaval of the pandemic. Newmobility.com

JANUARY 2021 7 POSTS

Power Chair Innovators Honored in Time and Popular Science Power wheelchair users will never drive off a hidden curb or crash because of an out-of-control chair if the innovative designers at LUCI get their way. Time magazine recognized LUCI’s sensor-based mount- able hardware for power chairs as one of the 100 Best Inventions of 2020 and Popular Science deemed it the Best of What’s New in 2020. LUCI’s system mounts between the power base and seat and “com- Replace the Blue Button With Your Phone bines data from cameras, ultrasonic sensors and radar into a single, Dana Jones got the idea for Accessadoor while 360-degree view of the world, giving riders unprecedented indepen- she was stuck inside a building because she dence and safety,” according to a press release announcing the honor. couldn’t hit the automatic door opener. Jones LUCI CEO Barry Dean designed the product with the needs of his called a friend to come let her out. While daughter, a power she was waiting, she thought, “I just wheelchair user, in used my phone to get help, why mind. “This is an can’t I use it to open the door?” incredible honor, Enter Accessadoor, a simple and one we would retrofit insert that can be have never con- installed onto any door that sidered when my already features push-button brother Jered and access. The device takes about I started tinkering five minutes to install and runs off with my daugh- the power in the button. Once the unit ter’s wheelchair in is installed, anyone who has downloaded the the kitchen three Accessadoor app can open the door simply by years ago,” said opening the app on their phone. Dean. “The most Jones and the team at Accessador are work- LUCI’s sensors and cameras could keep power chair users exciting part of ing to get the word out to colleges, hospital from flying off curbs or crashing. being included in systems and others. Until they are more readily this list is having available, it’s worth asking your favorite almost the opportunity to bring more attention and, hopefully, innovation to accessible establishment to install a device. the world of power wheelchair users.” Accessadoor is taking preorders now, and at The product is already in use in five states and will be offered in clinics $99.95, “it’s not going to break anybody’s bank,” across the country as early as next month. See Time’s full list at time.com/ says Jones. “It’s kind of a no-brainer.” For more collection/best-inventions-2020, or learn more about LUCI at luci.com. info, check out: accessadoor.com

MEDIA ACCESS AWARDS: CRIP CAMP AND ITS PRODUCER JAMES LEBRECHT WERE AMONG THE HOLLYWOOD CELEB- RITIES HONORED NOV. 19 AT THE 2020 MEDIA ACCESS AWARDS. HOSTED VIRTUALLY BY PRODUCER, MODEL AND ACTOR NYLE DIMARCO, THE 2020 CEREMONY RECOGNIZED INDIVIDUALS, SERIES AND FILMS THAT HAVE REDEFINED ON-SCREEN REPRESENTATION FOR THE DISABILITY COMMUNITY, WHILE ADVANCING THE PORTRAYAL AND EMPLOY- MENT OF PEOPLE WITH DISABILITIES IN HOLLYWOOD. NETFLIX HIT AWAY ACTOR DANNY J. GOMEZ AND WRITER RAMY YOUSSEF ALSO WON AWARDS. THE ENTIRE SHOW IS AVAILABLE AT MEDIAACCESSAWARDS2020.COM, ALONG WITH THE SECOND ANNUAL DISABILITY LIST, A CURATED LIST OF THE MOST PROMISING UNPRODUCED SCRIPTS FEATURING

WATCH AT LEAST ONE LEAD CHARACTER WITH A DISABILITY.

8 NEW MOBILITY On the Road Again Finding the accessible RV of your PLAY dreams is easier than ever with the IF THE SLY SMILE ON WENDI “WHEELS” launch of Winnebago Industries’ BURNER’S FACE IS ANY INDICATION, YOU Accessibility Enhanced RV Line. Built DON’T WANT TO MESS WITH HER ON THE around two new class A models — the BASKETBALL COURT. WITH A SLICK SPORTS 35-foot, diesel-powered Inspire AE and the 31-foot Adventurer 30T AE — these CHAIR AND A MEAN HANDLE, WHEELS IS new motorhomes include revised floor ONE OF NINE “BALLERS” YOU CAN CHOOSE plans and adaptations to approximately FOR YOUR 3-ON-3 BASKETBALL TEAM IN THE 40% of their features. NEW BOARD GAME HOOP GODZ. THANKS The new floor plans reflect the design TO ITS FAST-PACED, FUN TAKE ON A SPORT elements most commonly requested by THAT HAS STRUGGLED TO TRANSLATE TO customers with accessibility needs over THE BOARD GAME ARENA, HOOP GODZ BLEW the last four decades, including expand- PAST IT’S KICKSTARTER FUNDRAISING GOAL ed hallway and bathroom areas, acces- WITH OVER $47,000 RAISED. sible controls for lights and RV systems, and remote controls for the wheelchair lift and door. The Inspire also features factory-installed wheelchair tie-downs. THE GAME IS IN PRODUCTION NOW, BUT YOU Winnebago has been building one-offs and custom vehicles for over 40 CAN MANAGE YOUR OWN TEAM TO TEST IT years, but standardizing the accessibility features translates to measurable con- OUT ON TABLETOPIA AT TABLETOPIA.COM/ sumer savings and more readily available vehicles, according to Jennifer Butters, PLAYGROUND/HOOP-GODZ-QHHWEJ/PLAY- the director of Winnebago’s Specialty Vehicle Division. The 2021 Inspire AE NOW. KEEP TABS ON THE GAME’S DEVELOP- starts at $299,000, while the comparable 2020 model started at $357,000. MENT AT KICKSTARTER.COM/PROJECTS/ The AE vehicles will be available on the lot at La Mesa RV locations OMARIAKIL/HOOP-GODZ. around the country, sparing would-be owners the eight to 12-month wait to purchase a custom vehicle. “This year we have seen a drastic change in the way people vacation, and with RV travel on the rise, La Mesa RV wants to provide model options to all of our customers across the country, including those with mobility limitations,” said La Mesa RV President Jason Kimbrell. “We are excited to work with Winnebago and enable more people to experience the joys of traveling with a modified, accessible RV and very little wait time.” For more information about Winnebago Specialty Vehicles, visit sv.winnebago.com/models/accessibility-enhanced

Where We’re Going, We Do(n’t) Need Wheelchairs! Michael J. Fox has been to the future, the past and pretty much anywhere you can think of in the entertainment world, but none of his journeys prepared him for the experience of travelling as a wheelchair user. In his new memoir, No Time Like the Future, Fox, who has lived with Parkinson’s disease for 30 years, writes: “Often in the wheelchair, I’m luggage. I’m not expected to say much. Just sit still. … No one listens to luggage. It can be a frustrating and isolating experi- FACTS & FIGURES ence, allowing someone else to determine the direction I’m going and the rate $80.5 to $134.2 million: The estimated of speed I can travel. The pusher is in charge. From the point of view of the range of the total annual economic impact occupant of the chair, it’s a world of asses and elbows. No one can hear me. To of adapted and para sport-related tourism compensate, I raise my voice and suddenly feel like Joan Crawford in What Ever events nationwide. Happened to Baby Jane?, barking out orders.” — Based on a survey sent to 262 organizations The memoir, Fox’s fourth, focuses on reconciling his energetic advocacy and between July 28 and Sept. 22, 2020 by All In Sport Consulting, in partnership with Stitch Marketing optimism with the often harsh physical and emotional realities he is facing. In a Research and Huddle Up Group. The full report is November profile, New York Times reporter Lisabeth Egan summed up his per- available for download at adaptedsportlabs.com/labs- spective thusly: “He used to be a believer in making lemonade out of lemons, 2020-session-recordings (see “Economic Impact of the Adapted Sport Industry” presentation). but now, he writes, ‘Screw it — I’m out of the lemonade business.’” Read Egan’s profile at nyti.ms/3pre8mH, or buy Fox’s book, No Time Like the Future, via online retailers.

JANUARY 2021 9 MEMBER BENEFITS unitedspinal.org

United Spinal Association is dedi- NEWS FROM UNITED SPINAL cated to enhancing the quality of life of all people living with spinal cord injuries and disorders (SCI/D) by providing programs and services that maximize independence and STAY CONNECTED WITH enable people to be active in their VIRTUAL SOCIAL HOURS communities. Just because you are stuck at home during the pandemic doesn’t mean you can’t BENEFITS INCLUDE: meet new people and get your socialization on. United Spinal Association is commit- ted to helping people with SCI/D connect for peer support, meeting up virtually or Personalized Advice and Guidance just finding ways to take breaks from the daily, socially-isolated grind. Peer Support United Spinal’s Resource Center maintains an up-to-date list of daily virtual support groups and social gatherings offered by United Spinal chapters. After seeing the Advocacy and Public Policy demand for online get-togethers, Lindsey Elliott, United Spinal’s director for member Veterans Benefits Counseling resources, started hosting a weekly social hour on Zoom every Thursday at 1 p.m. Accessibility Advocacy Eastern Time. The weekly gatherings, which began in September, offer attendees a chance to meet new people, catch up with old friends and chat about whatever is on Local Chapters their minds with fellow community members. There is no agenda. New Mobility magazine

Informative and Educational Publications

Ongoing Educational Webinars

Membership in United Spinal Association is free and open to all individuals who are living with SCI/D, their family members, friends, and healthcare provid- ers. Visit unitedspinal.org or call 800/962-9629.

United Spinal has over 70 years of experience educating and empow- Elliott added an 8 p.m. ET social hour to accommodate west coast participants, ering individuals with SCI/D to and says the groups usually draw five to 10 participants. “We certainly have our achieve and maintain the highest regulars that come every week now,” says Elliott. “It’s helped our members connect levels of independence, health and with each other regularly. I hope we can continue to spread the word about it and personal fulfillment. We have 50+ that more folks will feel comfortable joining us.” local chapters and 190+ support If your chapter or support group hosts an online gathering, or you would like to groups nationwide, connecting be included on United Spinal’s page, contact Elliott at [email protected]. To our members to their peers and see the listings or register to attend one of United Spinal’s Social Hours, visit united- fostering an expansive grassroots spinal.org/events-usa. network that enriches lives.

10 NEW MOBILITY RIBGRIPS HANDRIM COVERS Available from RibGrips 559/372-3243 or RibGrips.com

A wheelchair handrim cover designed by a quadriplegic veteran, RibGrips are made with ergonomic/ responsive soft rib discs that increase performance and decrease fatigue. RibGrips’ unique material offers longevity and 360 degrees of grip.

You can say goodbye to gloves and calluses and hello to a whole new level of mobility.

The Safe, Practical Theand Safe, Convenient Practical way to The Safe, Practical andtravel Convenient wherever way and to and Convenient way to travelwhenever wherever you want. and travel wherever and whenever you want. whenever you want. No more worries about

Nohaving more accessibleworries about No more worries about havingfacilities. accessible facilities.having accessible

facilities.  Different models to meet  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 JANUARY 2021 11

Custom wheeled travel case “For home AND on-the-road; When ya Gotta Go, It'll Go With Ya!" available. TODD AGAINST THE MACHINE By Todd Stabelfeldt

CAN YOU HEAR ME NOW? Because I have so many things I can’t of Jabra, acquired longtime audio physically do, I’m thankful that I’ve got industry leader Blueparrot in 2016, it my hearing and voice to help me out did something very smart and fully embrace both to maximize — it left Blueparrot my productivity and independence. alone. Blueparrot The Blueparrot Being heard is important to everyone, was known for C300-XT headset but, as a high quad, my life can depend innovative noise on my ability to make my needs canceling technology and high-quality known. So, it’s the practical “staying microphones favored by professional The bat- alive” aspects that drive me to secure drivers. You can expect the same tery life the most effective microphones, clarity and cleanly-captured voice is next-level. speakers and headset for my needs. from its microphone that the com- I need to know Much like the way I set up my pany has always delivered. With this my headset will keep a home and work computers (see microphone, I have the confidence charge for a long time. Todd Against the Machine, October that people will understand what I’m Whichever headset you go 2020), I break my audio setup into sharing with them and it won’t be with, make sure it has the ability to two modes: the mobile and the fixed. garbled. upgrade its firmware. Regular obso- When I’m on the go, I’m all about What’s so special about the lescence was the big reason headsets the headset. I want some- Blueparrot C300-XT? Truckers didn’t last long — the market out- thing that’s elegant, pro- use them; the entire deliv- paced them and they were quickly fessional and functional ery industry uses them; made unusable. In the old days, I’d go that flawlessly handles everyone who works in through headsets every year or two. my calls and lets me noisy places relies on the Now, with firmware upgrade capabili- easily control Siri and Blueparrot line. Its tech- ties, I can update my headset with Dragon Anywhere. But nology to clear out the the latest software so it works with when I’m sitting in front background noise and newer smartphones. of my workstation, focus on delivering your For my fixed setup, when I’m sit- performance trumps voice in a crisp, clear ting in front of my tech gear, the elegance. I need the soundwave is amazing. critical components are my speakers most accurate dic- Plus, the speakers in and microphone. The stellar speakers tation and highest my headset deliver I use are the AudioEngine line from reliability. And hon- the same kind of clar- Austin, Texas — I got the red ones. I estly, there’s nothing ity. I can be in a loud originally got them without the sub- better than vibrating place with dogs bark- woofer and that was a mistake. But bass blasting from my ing and still hear just after realizing something was missing subwoofer. fine. The C300-XT’s from the sound, I ponied up and got My enthusiastic sound quality is top the subwoofer. It made all the differ- mobile recommenda- notch and more than up to ence. Not long after, when I cranked tion is the Blueparrot clearly playing my favorite up the speakers, they shook the walls C300-XT headset from podcasts and music when to the point where pictures hanging Jabra. When GN I’m out and about. in the entryway fell to the floor. Audio, the owner Finally, the kicker: Setting up the speakers for maxi-

12 NEW MOBILITY The Yeti Blue mic mum effect takes some tinkering. Mine rest on a platform that tips them up at the perfect angle to pro- duce the best sound field together “Now my with the subwoofer. Now when I play Apple Music, my office sounds office sounds like a music studio. like a music Accompanying the speakers is studio.” my desk microphone, which looks like a throwback to old-school radio days. It’s round and not boxy, but AudioEngine speakers definitely bulky, and it’s called the come in fire-engine red. Yeti Blue. It’s the best mic I’ve tried. You have to get it set up correctly to utilize its great capabilities, so don’t throw away the instruction booklet and be sure to bookmark the YouTube tuto- Do you Believe in Magic? rials because they’ve got details on how to position it for maximum effective- ness. When you get it into that sweet Bowel & Bladder Basics are our Business! spot, it pulls your voice out of the air and filters out the background noise. Urological Supplements Suppositories The right combination of speakers and Cran Magic + ™ The Magic Bullet™ microphone should make your voice bladder, kidney & urinary health. safe & sure! Faster acting, crisp for others if you’re on Zoom, water soluble suppositories. while making sure you don’t miss a word of your next online meeting and Mannose Magic™ Bowel Supplements allowing you to boom out your favorite maintain a healthy urinary tract- flush jams when you just want to relax. away E.coli. Magic Cleanse™ The equipment I recommend in this promotes fuller movements column costs between $125 and $200, with greater ease if you choose models on the low-end. (and less time). That seems like a lot of money, but I have learned that sometimes buying Enzyme Magic™ less expensive products means that I better digestion= better elimi- end up paying what I bought them for nation. multiple times over. That ultimately costs more than if I’d chosen the higher-priced, better product up front. As always, your audio needs will be unique to you. Please keep that in mind as you explore your own audio options. Think about what your objec- tives and goals are for your setup and find tech that supports them. It’s never Mention This * one-size-fits-all. Ad and Receive Remember, if you’re not working the machine, the machine is working you. 5% OFF

Resources • AudioEngine, audioengineusa.com www.conceptsinconfidence.com • Blueparrot C300-XT, blueparrott. 2500 Quantum Lakes Dr. #214 com/on-the-road-headsets/ Boynton Beach, FL 33426 blueparrott-c300-xt (800) 822-4050 • Yeti Blue, bluemic.com/en-us/ *one time discount per customer products/yeti

JANUARY 2021 13 HOW WE ROLL

REAL ESTATE AGENT Ryan Gebauer

When Ryan Gebauer became a C3-4 quadriplegic at 16, he thought he had no future. But after getting his real estate license, he’s found his niche as the rare broker who specializes in accessible housing. Ryan to the Rescue henever someone calls Ryan Gebauer’s Ryan that becomes available is if someone who had one dies or Realty Group Brokerage in Coral Springs, Florida, moves out of the area.” W looking to purchase or rent an accessible home, Often, Gebauer works with his client and the landlord to it’s usually in desperation — and it always presents a new figure out what will best fit each of their needs. He does this by challenge for Gebauer and his team. facilitating inexpensive modifications that work for both parties. This is especially true since a lot of his clients end up being “If you can’t find an accessible home to own and a landlord isn’t people with new injuries, fresh from rehab. They often need going to let you renovate, that’s when you start looking for a step- an accessible rental while they search for a new accessible in shower where you can put a threshold ramp,” he says. “Or build home to buy or wait for their inaccessible home to be out the shower itself, so you can get a roll-in shower chair into it.” renovated. Sometimes they don’t have the money for either, While they search for the right home, Gebauer’s clients may so the rental becomes their permanent home. have to use the bathroom of a friend, sponge bath in bed or use “The ADA doesn’t a hose to take a shower, so his motivation is always high to get apply to private homes, these projects done as soon as possible. so you can’t guarantee Meanwhile, if someone does have the money to purchase or anticipate a landlord is and renovate a home, Gebauer looks for what he calls “the right going to rip out an entire bones,” such as a property with a larger bathroom or wider door bathtub to make a roll-in frames that are already conducive to accessibility. shower,” says Gebauer. Either way, accommodation takes strenuous negotiation “There’s a lot of desire for with contractors or landlords, so having a real estate broker one, but the availability is who has an SCI representing you is invaluable and rare. near zero. The only time Gebauer takes pride in being one of the select few, but he

Gebauer NEW YEAR’S RESOLUTION: ADVICE FOR YOUR PRE-INJURY officiated at I want to get back into video SELF? Get into support groups, get the wedding of two of his games and I want to play them into school. And — now that I know clients, the competitively at an amateur what I enjoy doing — just have ev- Sandovals. level just to have some fun. erything focused on one career.

14 NEW MOBILITY Masks and Mixed Messages

Gebauer discusses what it’s like living through the pandemic in Florida, where a lax government response and unclear health protocols have led to confusion and frustration.

Because of my disability, I’m not required to wear a mask, but I felt that to protect everyone else, including myself, I should. It’s a hardship for me due to my limited diaphragm capacity and because I need to cut a hole in the mask to drive my sip and puff wheelchair. “I can’t tell you how Gebauer enjoyed his first boat-fishing trip many weird looks I get since his injury. It was his friend’s first time, too, and to celebrate, his friend dedicated at the grocery store that first fish he caught to Gebauer. because the tube for my chair is baby blue like the mask, so I look like I have almost didn’t become a real estate broker at all. this elaborate oxygen “Being injured at 16, I thought college and university were apparatus. Still, I don’t closed to me, and I didn’t have any idea what I would do with want someone to my life,” says Gebauer, who eventually earned an MBA in 2008. complain I’m making Following that, he decided he wanted to practice real estate them uncomfortable. and estate law and figured he’d take a real estate course while What’s worse, the he waited to take the law school entrance exam. media is scaring everyone, and I don’t

“The teacher of the real estate course told us if we passed, know what to believe. we’d be eligible to take the real estate licensing exam and I It’s frustrating in the thought, why not? Why pass up an opportunity? That’s how I was political arena when raised,” he says. “If you get an opportunity, see where it leads.” I hear, ‘Don’t worry Where it led was to him opening his own brokerage and about wearing a mask. “ being one of eight realtors he knows of with spinal cord injuries It’s OK to go outside in Florida. That’s a far cry from how many wheelchair users with crowds, but were realtors when he started in the industry in 2009. Back don’t go indoors with then, when he asked the National Association of Realtors how crowds. But also, if you many in their ranks had disabilities, he was told that wasn’t even don’t have to go to a hospital, don’t go to a hospital.’ a statistic they kept. “It still isn’t,” he says. “But now I know of Honestly, what do you want us to do?” eight in Florida and one in South Carolina, all who were inspired by what I was doing and went out to get their licenses.”

CAN’T LIVE WITHOUT? Spinal WHY I JOINED UNITED SPINAL: I’m a chapter presi- Cord Injury Support Group of South dent of Spinal Cord Injury Support Group of South Florida brought me back from Florida, and we were approved for a grant. I wanted depression after I lost my mom and to thank United Spinal for providing that opportunity. helped me recognize the need for In September, we became the second United Spinal accessible housing. Chapter in Florida.

JANUARY 2021 15 JOSH SPENCER & ‘The Last Bookstore’

By David Radcliff with additional reporting by Allen Rucker

n March, as COVID-19 began to wend its way across the United States, the Los Angeles Times solicited stories of be- Iloved local shops, restaurants and hang-outs already clos- ing their doors, permanently. The list of casualties rapidly mounted: an open-play child- care center in Highland Park; an independent, LGBTQ- owned coffee shop in East Hollywood; a Middle Eastern eat- ery near Anaheim. Even Souplantation, a California mainstay restaurant franchise for over 40 years, proved no match for COVID-19. “I was a total geek until I hit about 10th grade, or so,” says And yet, for now, The Last Bookstore, a gorgeous and Spencer. “I was very into fantasy and science fiction and then expansive haven for bibliophiles in downtown Los Angeles, even writing and drawing out maps of these things. I was ba- continues to hold its ground. Like its founder, Josh Spencer, sically a Dungeons & Dragons type of guy.” who was paralyzed in a traffic accident at age 21, the business When he wasn’t ensconced in these escapist fantasy has a knack for persevering through unexpected setbacks. worlds, Spencer enjoyed what he describes as “an idyllic, mid- “I’ve trained my brain, over the years, in how to deal with dle-class existence” that bounced between Hawaii and North my disability,” says Spencer. “Learning to deal with challeng- Carolina. His childhood was enriched by two sisters and two es in business is the same thing. With every little frustration, loving parents and an active life in the nondenominational I’ve tried to figure out a positive way to spin it into something church his father pastored. He hiked, surfed and enjoyed interesting or fun. Even now.” other outdoor sports. “Once I started developing physically and getting tall and exercising, I began to move away from the books,” Spencer BeforeA Comfortable he became a wheelchair Life user, a business owner and a says. “So, for three or four years, I was much more about ath- devoted father, Spencer was a teenager with a singular pas- letics and physicality, because that would get me more atten- sion: books. tion from girls.”

16 NEW MOBILITY supposed to happen. It was what my lot was, coming to me from God.”

FollowingTime for his injury, a Change Spencer took a year off from college and found himself not only in physical recuperation but also becoming what he describes as “emotionally flat.” Whatever abstract ambitions he may have had pre-injury were now even further sidelined. For the moment, he was satisfied to simply play cards on the beach with friends and, gradually, to return to some versions of the extracurriculars he once enjoyed. “I was really just going through the motions,” Spencer said. “Before [the accident], I was athletic, so this was a pretty big shock to the system to go from being extremely physical Even as he was awash with typical teenage hormones, to not being able to do those things to the same degree.” Spencer always found joy and solace in nature and physical For several years, Spencer lulled himself into a comfort- activity. He still recalls the sensation of warm beach sand able, if unchallenging, routine. Beach time. Weightlifting. during many spirited games of volleyball. Video games with friends. A few hours a week spent flipping “Everything for me was about my feet having contact with items on eBay just to pay some bills. the earth,” Spencer said in a 2019 interview with the Surviv- Today he admits that, if not for the support of his family, ing to Thriving podcast. “Ever since I was a little kid, I would he might have ended up homeless. “My grandmother got me refuse to wear shoes. Being barefoot was my favorite thing in a little apartment, so at least I had a place to stay,” Spencer the world.” says. “But then, after a while, I started to feel That love of the outdoors was sustained during Spencer’s a little bit like a loser. I just wasn’t go- years at University of North Carolina, Chapel Hill, where he ing anywhere with my life. I wasn’t studied religion and communications and maintained an ac- contributing anything.” tive social life. Though he immersed himself in the college This shift in perspective “ experience, his post-college plans remained hazy — maybe was catalyzed, in part, by go to Japan, teach English and surf. the end of a relationship In these early years, Spencer — handsome, confident and with Jenna Hipp, a young a gregarious student — retained an enduring sense that ev- woman with whom Spen- I went from being erything would work out OK. cer had begun to fall in a beach bum to “I was also very religious at the time,” Spencer says. “As love. When Jenna left a young, religious person, you’re very sure of yourself, and Oahu to start a new life, a workaholic in you think you have all the answers, because you haven’t lived Spencer found himself re- long enough. I was very free with telling others what life was evaluating the trajectory of basically a week. all about.” his own. “ But in 1996, during his junior year of college, Spencer’s “I think people had begun faith and future were dramatically tested. While out riding to realize, ‘Oh, Josh has no am- mopeds with a friend, Spencer failed to halt for a stop sign bition. He has nothing,’” Spencer and was hit by a speeding car. says. “And a switch flipped in my head. The driver was a nurse who was running late for work. Her I immediately set out to work, like, 90 hours a 10-year-old son was a passenger beside her. They stopped, ter- week. I went from being a beach bum to a workaholic in basi- rified, in the wake of the accident. cally a week.” But even as he lay in the street with a collapsed lung, bro- But even with his mind set firmly towards productivity, ken pelvis and two exploded vertebrae, Spencer looked up at Spencer still had difficulties breaking into traditional work- what he describes as “a perfect sky” and felt an unusual sense spaces and overcoming feelings about his own limitations. of internal calm. “I felt awkward in my own skin,” Spencer says. “I didn’t “A Bible verse from the book of Job started cycling get any jobs. I started doing my own thing because I had to, through my brain, almost like a reel,” says Spencer. “‘Shall I because no one would hire me.” accept good from the Lord, but not trouble?’ I felt, then, that On his long road to recovery, Spencer sought out treat- what was happening to me was fine — and maybe was even ment for depression and eventually made his way back to his

JANUARY 2021 17 nicators, and I was raised to be kind toward others. People want to be around other people who make them feel good and who add something to their life.” Gradually, Spencer’s homegrown book business, cheek- ily called “The Last Bookstore” as a nod to the rise of digital books, became too unwieldy for the confines of his loft apartment. In 2009,caption tempted by the allure of an affordable short-term lease, he snagged a 1,000 square-foot storefront on downtown Los Angeles’s Main Street at a key moment in the neighborhood’s evolution. “I don’t think I ever would have pursued it until this community advocate, Brady Westwater, who lives downtown, found me,” Spencer says. “He was like, ‘I heard you sell books online. People downtown really need a youth bookstore, and Josh Spencer shares his love of reading with his children. I want you to open one.’” first love: the written word. But when one of his early ventures, an online music magazine, collapsed and his parents divorced, Spencer decided he needed a change of scenery to ThoughExpansion Westwater and made noInnovation financial investment of his own, get his creative and entrepreneurial juices flowing again. and expected no money from Spencer in return, he had a “It had been a series of losses over a year or so,” he says. “It strong reputation for helping Los Angeles entrepreneurs track was time for a change, and I had never lived on the West Coast down, and take root in, affordable downtown locations dur- or in a city, so I thought I’d give Los Angeles a shot.” ing what was proving to be a renaissance period for the area. “Brady never once mentioned my disability or anything about it,” says Spencer. “He just helped me look at every space People Downtown Need downtown and found both of the locations The Last Book- store ultimately ended up being in — the smaller one first, Plentya Bookstore of people arrive in California with an eye towards self- and then the larger one.” invention, but few go about it in quite the way Spencer did. “The larger one” is The Last Bookstore’s current, eye-pop- There were no parties or internships or rehab or networking ping location: a 22,000-square-foot bank building that hails events. Instead, Spencer just dug in, kept his head down, and from the early 20th century. Although today its epic “book flexed his eBay muscles once again — this time by selling tunnels” and hand-drawn wall art have lit up many an In- books out of his apartment. stagram feed, the location was first a blank slate on which He began by scouting out literature at thrift stores, garage Spencer could let his imagination run wild. sales, yard sales, and libraries — a relentlessly physical pro- “I just sat in there, in this huge and empty space, and I let cess that was not always well-suited for even the most skilled it speak to me,” he says. “I tried to really hear and see what wheelchair user. the space felt like. And the vibe I got was Indiana Jones — an “At some of these book sales,” Spencer says, “the moment early ’20s-’30s university kind of thing. And maybe a Hellboy they open the doors, everybody runs in and starts grab- steampunk feel, too. Stylish and fantastical.” bing books. Sometimes I couldn’t even move anywhere. So I With the help of his father, Alan, an experienced contrac- would find ‘back doors’ where I didn’t have to compete with tor, Josh set about turning his singular vision into an inviting people physically but could use my relationships to gain an reality: advantage. What if I volunteer at this library sale? Will they A purchase desk that is, itself, seemingly made of books. let me buy books when nobody is around?” A labyrinth of literature that visitors could walk through and Though he had no formal training in business, Spencer’s take selfies from within. Special hide-away spaces for antique nascent book-buying enterprise benefited from his deep love books and artwork. of reading and from his natural, easy-going way with people. How, exactly, would such a unique and expansive space His disability, whatever its challenges, became an added ben- come to be? At first, Spencer wasn’t sure. But just as he had efit, too — something that primed others to remember and done since the beginning of his ventures into business, he re- help him. lied on the strength of community relationships. As Spencer’s book business steadily grew, so did his self- “Without my dad’s help, this would all have been cost- confidence and his professional network. prohibitive,” Spencer said. “And, as far as artistic elements, “I was always cognizant of being friendly. I always wanted we lucked out there, too. There were a lot of artists with stu- to build people up,” he says. “My parents were good commu- dios in that building. … A lot of people who were just excited

18 NEW MOBILITY Spencer transformed an empty bank building with whimsical arches of books and other features that have come to define The Last Bookstore. about improving downtown LA. The Last Bookstore was and read while wearing masks. something that was really up-and-coming. A group thing. A And yet, perhaps because he’s no stranger to unwanted big art project.” surprises, Spencer is outwardly unbothered by the impact the global pandemic may yet have on the future of his business. “I would say COVID has turned [running The Last Book- A Storybook Ending store] into a more manageable stress,” he said, no doubt tap- In the nine years that have followed its opening at Fifth and ping into the same resilience that buoyed him after that life- Spring in downtown Los Angeles, that big, group art proj- changing car accident 24 years ago. “Everything was feeling ect has been recognized by Conde Nast Traveler as Califor- a little off the rails before COVID, and now we can shrink nia’s largest new-and-used bookstore, has been featured in down but still have just as many, if not more, books.” an award-winning documentary called Welcome to The Last One of The Last Bookstore’s most imaginative weapons Bookstore, has grown to occupy two separate warehouses, and against COVID-19 customer loss is its new “book bundle” of- has even housed a $2,300 first-edition Jack Kerouac novel. fering, which invites readers to send employees a list of their It’s drawn a visitor from Kenya, eagerly looking for (and personal literary tastes and then to receive a curated batch of finding!) a childhood story he’d been tracking for decades. surprise books in the mail. It’s attracted YouTubing backpackers hoping to snag some “The whole thing was just built around a surprise,” says video of the store’s famous book tunnel. Spencer. “You don’t know what books you’re going to get. At And for Spencer, The Last Bookstore has helped supply first I thought, ‘Who wants to buy a stack of books without direction and purpose to a life that once felt sun-dappled but knowing what it is?’ But it just took off like a rocket, and peo- directionless. ple really loved the idea. It was really hot.” “I really love this work,” Spencer says. “It’s an ideal envi- Though his imagination has powered so much of The Last ronment for me, to just be constantly gaining more and more Bookstore’s survival in the past, Spencer is the first to admit information — to soak in all of this. Every day I’m going he can’t take credit for that book bundle idea — it came from through boxes, finding new books I’ve never seen before.” someone he married in December. Today, although the Last Bookstore has just as much Her name is Jenna Hipp Spencer, the woman he’d fallen warmth and character as it did when Spencer dreamed it up for more than 20 years ago. Today, they work side by side at all those years ago, there’s not as much foot traffic through The Last Bookstore and raise four children. its aisles. The ongoing threat of COVID-19 has reduced the You might call theirs a storybook ending — but given the store’s sales by 80%, but staff are recouping some of this resilience of Josh Spencer and The Last Bookstore, there will loss by hosting socially distant weddings and other special likely be countless more stories to tell. You may visit them events, and by allowing a limited number of visitors to sit online anytime you like at shopthelastbookstore.com.

JANUARY 2021 19 BY TEAL SHERER

2020 NEW MOBILITY PERSON OF THE YEAR:

ANDREA DALZELL

At 6:45 p.m., on a warm spring evening, Andrea Dalzell pushes into the Montefiore Medical Center in the Bronx, New York City. COVID-19 cases are surging. Dalzell, a registered nurse, drops off snacks to share in the staff lounge, puts on protective gear, and huddles up with her coworkers around a white dry erase board. For the next 12-plus hours, Dalzell, who typically has six to eight patients, and up to 13 when the floor is short-staffed, administers medication, tends to wounds, gives baths and suctions the airways of those on vents. She holds patients’ hands when they need comforting, FaceTimes with their family members and responds to codes. The stakes are high and the work is emotionally taxing, but Dalzell is exactly where she wants to be — at the bedside caring for patients. At 33, Dalzell is the only registered nurse she knows of in New York City who uses a wheelchair, and she is forging a path for people with disabilities in healthcare. “Andrea is a pioneer,” says Karen McCulloh, a nurse with multiple disabilities who co-founded the National Organization of Nurses with Disabilities in 2003. “Nursing with a disability is still not completely accepted.” Despite repeatedly having her abilities questioned through school and being repeatedly denied acute care nursing jobs, Dalzell answered Governor Andrew Cuomo’s plea for assistance as COVID-19 cases overwhelmed New York City hospitals. “I just wanted to help,” she says. Dalzell’s knowledge of ventilators, gained from having friends who use them, proved valuable, and her co-workers and superiors took notice. In recognition of her achievements, the Craig H. Neilsen Foundation selected Dalzell as one of the inaugural recipients of its Visionary Prize and awarded her $1 million to use at her discretion. Dalzell is still figuring out how she will use the money, but has already started a foundation to help bridge the gap between education and employment for people with physical disabilities. We have no doubt that whatever Dalzell does will continue to build on the progress she has made, and we’re excited to see what her future holds. Her tenacity, compassion and vision are exemplary and shape her vocal leadership in a key, often-overlooked field. On the heels of a relentless and trying year, where the importance of public health and the essential nature of health care workers were constantly reinforced, it’s hard to imagine a more ideal person to honor as the 2020 New Mobility Person of the Year.

PHOTO BY STACY BE PHOTOGRAPHY

20 NEW MOBILITY JANUARY 2021 21 2020 NEW MOBILITY PERSON OF THE YEAR: ANDREA DALZELL

alzell was born and raised in Brooklyn, New York. hospital, this same doctor signed her out so she could at- She was diagnosed with transverse myelitis, an tend junior high school graduation. He even attended the Dinflammation of the spinal cord that causes pain, ceremony to make sure she was OK. “In my memory book, muscle weakness and paralysis, when she was 5 years old. he wrote, ‘Please, anything but a lawyer!’ So, I figured if you Even at a young age she was a force to be reckoned with. can’t beat them, join them. I decided I was going to be a doc- Dalzell laughs recalling a recent conversation with her tor so I could figure out how I could cure pain, because no childhood rehab doctor. “She said, ‘Andrea, you are grown, one should go through the pain that I have been through.” you are beautiful. I always knew you were going to be While studying biology and neuroscience at the City someone in the world, because even at 5 you were feisty, University of New York’s College of Staten Island and au- you were smart, you knew what you needed and you ran diting medical school classes, Dalzell realized that doctors the show,’” says Dalzell. “That is very interesting for me to treat the disease, not the person. “I was much more inter- hear because I run the show now.” ested in working hands-on and caring for people, just like Dalzell attributes her tenacity to her parents, first-gener- my nurses did throughout my life,” she says. “They took ation immigrants from Guyana, who encouraged hard work my mom’s place when she couldn’t be there, and they knew and perseverance. “I told Andrea, how to make me smile even when I don’t let anyone ever tell you there felt like I was at rock bottom.” Dal- is something you can’t do,” says her zell, who had never seen a nurse mother, Sharon Dalzell. “Just look in a wheelchair, applied to CUNY at them straight in the face and say, College of Staten Island’s nursing ‘Watch me.’ As long as you do it in program in 2016 and got accepted. the right way, you’ll reap the ben- During orientation, a profes- efits in the years to come.” sor pulled Dalzell aside, assuming As a child, Dalzell alternat- she could not do bedside care from ed using a walker, crutches and her chair, and dismissed her for wheelchair, but by age 12, she the day. “I told them that the ADA used a wheelchair full-time. “The says that you can’t kick me out of hardest part about it was the bul- a program that I’ve already been lying,” she says. “In junior high, I accepted to, and that I would stay,” was being pulled out of classes for she says. Afterwards, Dalzell went resource room, PT and OT — and to the school’s Office for Students that labels you. We don’t educate with Disabilities and the Office for kids about disability, so they don’t Diversity and Inclusion to see what know, and they say things.” legal action she could take. During her freshman year of Throughout the meetings that high school, Dalzell got a Metro- followed, Dalzell promised to com- Card, which allowed her to take municate whatever accommoda- the city buses to and from school tions she might require. She made on her own, instead of the tradi- Being a nurse was Andrea Dalzell’s childhood dream. it clear: “I need you to trust that as tional yellow school bus. “As a a nurse I am going to put patient teenager clamoring to feel normal and accepted, this was safety and my safety first.” huge,” she says. “It allowed me to be social and have a Between professors doubting her capabilities and the dating life. It gave me the opportunity to go to student constant pressure to prove herself, nursing school was council and be a part of the senior committee. I was part more challenging than Dalzell expected. “There was this of the gospel chorus that went on trips across the nation.” weight of never being allowed to be a student. What if I Though Dalzell felt capable, a school counselor referred couldn’t reach something? How would I be able to play that to her as someone with “three strikes”— meaning that out in front of the teachers? How would I be able to keep my since she is black, disabled and a female, she wouldn’t go wheelchair clean, hold this, wipe this, turn a patient, and far in life. “I just remember thinking that I didn’t want that carry a basin full of water? All of these things are running to happen,” she says. through my mind.” To help quell these fears, Dalzell started boxing. Gain- ROAD TO NURSING ing strength and stamina made the above tasks easier and Dalzell has had 33 major surgeries and used to jokingly allowed her to perform chest compressions to pass the CPR blame the doctors for all of her pain. “I’d tell my orthope- test. In February 2018, Dalzell passed her boards and be- dic surgeon that I was going to be a lawyer and come back came a registered nurse. She finished her bachelor of sci- and sue him,” she says. While recovering from sepsis in the ence in nursing later that year with high marks.

22 NEW MOBILITY “Anything that I ever asked for came true, and I didn’t want it to go away.”

JANUARY 2021 23 2020 NEW MOBILITY PERSON OF THE YEAR: ANDREA DALZELL

Dalzell will never forget the look she received from a jobs. “I had staffing agencies tell me, ‘We can’t place you. wound care nurse she was shadowing in the BSN program. We don’t think anyone’s going to want you,’” she says. “I “It was this utter look of ‘what am I supposed to do with had two interviews for dialysis positions. The first person her,’” she says. The nurse tried to push Dalzell’s wheelchair claimed he forgot he made the appointment when he saw and when Dalzell offered to grab supplies for a patient’s me, and when the second found out I use a wheelchair, I room she replied, “Are you sure you can go get it?” heard him tell his assistant, ‘In a wheelchair? For an inter- “I kept thinking to myself I need to move more, be more view? No way. Nurses can’t be in chairs.’” flexible,” says Dalzell. “I didn’t want someone to think that As the number of COVID-19 cases grew, the door I couldn’t do it. Not realizing that it was her actions that opened for Dalzell. Answering Governor Andrew Cuo- were wrong, I placed it on myself.” mo’s plea for nursing help, she filled out an online survey for placement and saw Montefiore Medical Center’s human FINDING A JOB resources number listed. She called and left a message, as- After graduation, Dalzell applied for acute care nursing suming she wouldn’t hear back. But 15 minutes later, the jobs in hopes of building a strong foundation. “Why not have me there when someone is newly injured or dealing with having a stroke or diabetes?” she asks. “They get to see me living my life and taking care of them.” Dalzell had 76 interviews for nursing positions in hospitals and was re- jected for all of them. “The first 10 or so interviews I never brought up my disability, but then I realized something had to give because I was having great interviews,” she says. Dalzell began dis- cussing her disability and how she handles certain situa- tions, like ambulating patients and performing CPR, but that didn’t help. “There is this very old-fashioned Florence Nightingale view that nurses are pristine in appearance, healthy and well. Though most people with disabilities are healthy, we are constantly being challenged about our abilities,” says McCulloh, who was working in neurosurgery intensive care nursing in the late 1980s when she began experienc- ing symptoms of multiple sclerosis. “And though there is a gradual movement towards more diversity and inclusion initiatives in healthcare, we are not there yet.” While trying to secure a position in a hospital, Dal- zell worked as the health director at Rising Treetops at Oakhurst, a camp for kids and adults with physical and in- tellectual disabilities. “I went there as a camper when I was Andrea Dalzell is unapologetically the best nurse she can be. young, and it was great to be back,” she says. “There was this unspoken understanding between me and the camp- phone rang, and she was hired. ers. Not only do I understand what they are going through Dalzell picked up her credentials and went through a medically, but I understand it as a peer.” half-day of training without a hitch. But, before the day Dalzell then moved on to case management, which ended, the director of nursing pulled her off the floor, she hated. “It’s heart wrenching telling people that certain questioning her abilities. “I asked her if she had spoken to things aren’t covered by insurance or that they don’t qual- HR, because they hired me,” says Dalzell. “She told me she ify for certain services,” she says. “I also don’t like being didn’t mean to be offensive, and I went back to work. After behind a desk.” that, they all sang my praises.” Dalzell was working as a school nurse when the CO- Saskia Hosein, an RN at Montefiore, remembers the VID-19 pandemic hit in March 2020, and schools closed first time she saw Dalzell. “We have computers on wheels, throughout the country. and Andrea was pushing her wheelchair as well as the computer,” says Hosein. “I asked her if she needed help, think- ANSWERING THE PLEA FOR NURSES ing that is the right thing to do.” Though Dalzell declined Quarantining at home in Brooklyn with her parents and her help, they immediately connected. “As nondisabled two siblings, Dalzell updated her resume and applied for people, we have this image in our mind that people with

24 NEW MOBILITY THE SEATED NURSE ON INSTAGRAM

Known on Instagram as @theseatednurse, Andrea Dalzell posts raw, empowering and relatable stories. “Even though I put out motivational things, I am doing it as a reminder to myself,” says Dalzell, who has over 24,000 followers. “I am glad that other people are able to pull from it, but it really just started from me saying ‘You know what, I need to see myself as better. I am trying to accept myself every day.” Following are photos depicting Dalzell’s journey to become a hospital floor nurse.

Pausing between two hospital beds, Dalzell told her Instagram followers Today Dalzell is confident in her abili- Dalzell reflected on how she has slept that she was nervous when she finally ties, and she posted photo depicting in rooms like this one since she was 5 secured a nursing position in a hospi- her working calmly at her station to years old. “At one point I lived within tal. All of the questions about how she encourage others with disabilities who the four walls of a hospital room for would be able to be a bedside nurse have to fight for their place on the months on end fighting for my life. I “burned in my head when I realized I hospital floor. She wrote: know the depression that sets in when couldn’t reach the IV lines on the top “Here’s to all the students turned lying in these uncomfortable beds. I shelf in the supply room my first day. away from nursing schools because of know the frustration of not being as in- They seared when I had asked for help your perceived disability. dependent as you want to be. To be the to reach a feed stuck on a IV pole or to To all the nursing students told to needy patient because you want to see release a brake on a newer bed,” she drop classes because your disability someone and not feel alone. What it’s wrote. Then she added, “Here’s the was too much for them. like to be scared, praying for a miracle thing: Wheelchair users are innovators. To all the nurses that made it and what it’s like to want to give up,” We constantly have to think about through school and couldn’t get place- her Instagram caption reads. “This time ways to get things done.” ment, told to find another career, told around I’m the caregiver! Here with a In this photo she’s shown reaching that you could never work in acute heart touched by all those who once for items stored up high. In addition to care, told to go against your dreams. cared for me.” figuring out how to get those supplies, Here is to the naysayers, the she has turned a patient; handled nonbelievers, the misconceptions, the hanging and starting IVs; done CPR, discrimination, the biases. pushed a bed down a hall and trans- Most of all: Here’s to you believing ferred the patient to a CAT scan table; in YOU!” juggled 13 patients with multiple issues, drains, chest tubes, meds and codes in one night. “All those questions are silent now,” she wrote.

JANUARY 2021 25 2020 NEW MOBILITY PERSON OF THE YEAR: ANDREA DALZELL

REPRESENT Andrea Dalzell knows it’s important for people to see someone like her — a black, disabled woman — out in the world and represented in the media. This is why she starred in the ad campaign for Apple Watch, participated in the Raw Beauty Project and became Ms. Wheelchair New York 2015. “Being Ms. Wheelchair New York opened me up to the disability world,” says Dalzell. “Having that platform and using my voice to advocate for others and not just for myself was huge. My voice tran- scended beyond my own needs.” That same year, a photo of her was featured online in O, The Oprah Magazine as part of a story about the Raw Beauty Project. Doing the Apple Watch spot in 2018 was a big deal for Dalzell and she lights up when she talks about it. It shows her using the watch to track her work-outs – pushing, hand cycling and boxing. “It’s important to see people like you out in the world and represented in these big spaces,” she says.

disabilities can do less, but with Andrea it was the com- Dalzell tried to stay on in a full-time position, but was not plete opposite,” explains Hosein. “That first night I met her hired, and had interviews at other hospitals. “I had to stop,” she had an 11-patient load, which is a lot. She was calm, she says. “It took a mental hit on me to go through that rejec- focused and was just getting it done.” tion again. What else do I have to do to prove myself?” Dalzell kept a reacher in the storage unit for when she needed access to something up high, and before every shift VISIONARY PRIZE WINNER made sure her computer workstation was stocked with On a rainy September morning in Brooklyn, T.J. Holmes, needles, tubing and IV drips. On top of the emotional a correspondent for Good Morning America, knocked on stress of caring for patients during a pandemic, Dalzell Dalzell’s front door to inform her she had won the Craig H. felt pressure to prove herself. “I didn’t want to make any Neilsen Visionary Prize. Broadcasting live across the coun- mistakes,” Dalzell told Dr. Dan Weberg on The Handoff, try, Holmes invited her to the front yard where a canopy of a podcast about nursing. “Everyone triple checks their pa- blue and gold balloons covered a screen playing a video show- tients’ medications, I am checking mine 20 times. I am in casing her achievements. With her mom, sister and brother my patient’s room every 20 to 30 minutes, because I don’t by her side, Holmes pulled down a banner to reveal $1,000. want them falling. There was this overwhelming feeling He kept expanding the number by revealing more zeros. that something could go wrong and I had to prevent it.” “Then T.J. says, ‘What could you do with $10,000?’ and Dalzell drew on her family for emotional support. Both I’m like a lot,” says Dalzell. “Then [he showed] $100,000 her parents also worked the frontlines, her mom providing and I’m automatically thinking I won’t have school loans. meals to hospital employees, and her dad sanitizing patients’ And then he says $1,000,000 and I think my brain blanked. rooms. “She would call me some nights, ‘Mom, we lost sev- I thought there is no way you are giving me anything been patients.’ It was really, really bad,” says Sharon Dalzell. “I cause I didn’t do anything to deserve this.” prepared a bag with Lysol spray and wipes and left it at the The Visionary Prize was established to honor the mem- front door for when she came home in the morning.” ory and legacy of Craig H. Neilsen, an entrepreneur with Andrea also found strength in the camaraderie of her an SCI who strove to improve life for others living with fellow staff. “What we forget is that nursing is teamwork,” spinal cord injuries. Dalzell is one of three recipients of the says Dalzell. “I was able to be there when someone was inaugural award. “Andrea is a role model and an advocate,” overwhelmed and say, ‘Hey, do you need help?’ or ‘Hey, can says the foundation’s executive director Kym Eisner. “She is you give that medication and I’ll take care of that wound.’ willing to share her story and fight for equality, in both the And I wasn’t afraid to ask for help when I needed it.” workplace and the community at large.” “Andrea is a great nurse,” says Hosein. “I think her dis- “In the long run, I don’t want the prize to just benefit ability and what she’s gone through only makes her a better me, I want it to benefit others,” says Dalzell. She is working one. It’s personal and she’s invested.” towards a master’s degree in nursing and already started a Despite being denied acute care jobs, Dalzell had foundation, The Seated Position, to help people with physi- shown she could do the work — and through a pandemic. cal disabilities obtain professional employment. “I am be- In June, as COVID-19 cases declined, Dalzell’s contract yond grateful because I wouldn’t be this far without every ended. It was difficult for her to say goodbye. “Anything single person who has come into my life, whether it’s been that I ever asked for came true, and I didn’t want it to go good or bad, because everyone gave me an experience that away,” she says. has shaped who I am right now.”

26 NEW MOBILITY y undergraduate college We wanted a specific definition of journey took place decades FROM NEW MOBILITY MAGAZINE AND UNITED SPINAL ASSOCIATION “wheelchair-friendly” — and found on ago, my time neatly split WHEELS CAMPUS M A GUIDE TO WHEELCHAIR-FRIENDLY HIGHER EDUCATION that numbers don’t lie. The campuses into freshman-sophomore classes as a life beyond wheels that scored the highest on the survey nondisabled student and junior-senior had the greatest number of registered classes as a paraplegic. The two halves wheelchair-using students. The best could not have been more starkly campuses were also distinguished different. Now that New Mobility’s by adaptive sports and recreation college guide, Wheels on Campus, has programs, housing that was strictly been published, I’m starting to hear wheelchair-accessible, disability from readers who all say the same studies, student and faculty awareness thing: if only I had a guide like this and buy-in, a supportive community, when I needed it. and a high percentage of accessible In 1998, Barry Corbet, then-editor buildings and services. of NM, wrote a 10-page feature article Wheels on Campus is the first ranking the top 10 colleges. Now it guide of its kind specifically for seems like it came from a different You can download or read the entire guide wheelchair users — and it is only a era. Yet readers kept unearthing for free at newmobility.com/wheels-on- beginning. We will keep updating it, campus. The following pages provide a it from our website and asking for teaser of what to expect. adding at least another 10 colleges more. In 2019, we decided to create in the next year and more student a contemporary guide that would profiles and helpful information as When the results were in, I evaluated be at least 40 pages long and feature it evolves. And make no mistake, all the surveys, settled on a list of expanded student profiles as well despite the current pandemic, finalists, and hired nine trusted NM as difficult-to-obtain accessibility physical campuses will continue information, both physical and writer-reporters to personally visit our to be the biggest collegiate draw, programmatic. top choices. I joined them. Just as we despite an inevitable expansion of As project editor, I created an got started, COVID-19 got a foothold, online offerings. This is the way updated survey, then curated a list of severely hampering our efforts. But it should be — equal educational 400 top colleges to receive the survey, we persevered — a six-month project opportunity for all. We invite you, which contained 45 “yes or no” grew to a year, and we came up with a our readers, to share your valuable questions that could be compiled and 68-page magazine-format guide with information with us. scored, along with other questions. colorful photos. — Tim Gilmer

JANUARY 2021 27 WHEELS ON CAMPUS: AN EXCERPT

Location:East Lansing, medium city, population 118,427; 5,200-acre campus Tuition and fees: in-state: $14,460; out-of-state: $39,766 2020 undergraduate enrollment: 39,400; student-faculty ratio:16:1 Popular Majors: business, communication/journalism, biomedical and social sciences Ranked #34 in Top Public Schools (Best Colleges 2020, U.S. News & World Report) Number of registered wheelchair users in 2020: 12 Resource Center for Persons with Disabilities: 517-884-7273, [email protected]; rcpd.msu.edu

BY TEAL SHERER

ounded in 1855 as the nation’s pioneer land-grant university, FMichigan State University is a renowned research institution that offers more than 200 undergraduate, graduate and professional study programs and has graduated 20 Rhodes Scholars. Located in East Lansing, three miles from the state capital, the 5,200-acre campus is one of the largest in the country. It’s known for its world-class museums and beauty, as the Red Cedar River flows through the entirety of the campus. There are also art galleries, concerts and restaurants. Kathryn Mahoney went Mahoney MSU has a long history of disability back to school soon after and her dad inclusion, starting with providing her injury but probably show some needed more time to Spartan accommodations to blind and low- adjust (see sidebar). spirit. vision students in the 1930s. In the 1940s and 1950s, the university accepted students with polio at a time when fear with what RCPD could offer me.” has a robust snow removal system as well, of contagion was running high. “A lot Freshmen are not allowed to have a and students can notify the landscape of neighboring universities and colleges car on campus, but the RCPD arranged crew if there is an area they need priority were saying no — you use a wheelchair, for Martin to override the system, a major in clearing. There are also infrared crutches, walker, an iron lung — you are help since the campus is so sprawling. sensors for power activation doors — not coming,” says Virginia Martz, an “That created a sense of independence more reliable in the cold than standard ability access specialist in the Resource and freedom for me,” he says. Martin push plates. Center for Persons with Disabilities. “We also uses the bus system, which is run by Kathryn Mahoney, a standout were like, sure. You meet our criteria for Capital Area Transportation Authority. gymnast, was injured during her senior admissions, come on along.” “All of CATA’s buses are kneeling, so I year at MSU in a vaulting accident This inclusive, willing-to-adapt can roll right on. That’s really nice.” Also, at a gymnastics team practice. She outlook drew Clay Martin, a senior students with disabilities can reserve returned to finish her studies in chemical human resources and labor relations paratransit ahead of time to take them engineering as a C6 quadriplegic who major, to the school. “It’s part of the to and from classes and around campus. uses a power wheelchair. With three reason I fell in love with the campus This is particularly helpful during icy and semesters to finish degree requirements, when I first visited, how included I snowy winters. she took less than a full load and finished felt,” he says. “I was also impressed Because of the harsh winters, MSU in four. “First I lived with friends in

28 NEW MOBILITY an off-campus apartment that was so new the interior hadn’t been finished,” she says. KATHRYN MAHONEY: FIRST THINGS FIRST “There was no carpet and no closet door, so we got some fixes in there — the kitchen sink Sometimes when a student sustains a disabling condition just prior to entering area left open so I could roll under and an college or while enrolled as an active college student, a sense of urgency often dictates a return to studies as soon as possible. The feeling of not wanting to be accessible bathroom they converted to a roll- left behind is a strong motivator. Kathryn Mahoney, a C6 quadriplegic from a in shower. Since I was injured in gymnastics gymnastics accident late in her junior year, experienced just that. She went back practice, MSU helped with the cost of add- to Michigan State soon after her injury, eager to finish her degree. Now, looking ons.” back, she realizes she was not ready for the workaday world even though she had When she returned the following school graduated with a degree in chemical engineering. year to complete her She returned to her parents’ home in 2013 after graduating studies, she moved to a and began to take much-needed time to improve her strength mid-campus apartment and learn how to be truly independent. She had physical — now one of a hundred therapy three times a week with a goal of being able to live newly renovated by herself without personal attendants. She also got involved wheelchair accessible units in quad rugby and handcycling, both of which helped, but — and lived by herself, something was still missing. “I think the thing that bothered with help from personal me most was my inability to manage my bathroom situation. attendants. “I wanted to be I used to spend way too much time and get frustrated at on my own, and most of the whole process, so I had a Mitrofanoff bladder procedure my friends in my college done so I could cath myself,” she says. “It really helped with class had moved on,” she independence. I had talked with several women who had it, says. She had one lab to and it turned out to be a big, life-changing thing.” finish and wondered how The procedure involves the surgical creation of a reservoir she would manage without and a channel and valve arrangement that prevents leakage and dexterity in her hands. “It makes cathing much easier, especially for a low quad. “I no longer turned out I managed OK. have to struggle with taking off clothes and making a difficult But if I had needed a lab transfer to a toilet. It frees me up, takes very little time and is safer.” assistant, the RCPD would Rugby helped Mahoney build strength. The surgery, combined with her newfound strength and have provided one.” stability, meant she was almost prepared to re-enter the workforce. “But first I had The RCPD also arranges for note takers, to figure out what I could do.” Now, after a few years of not working, she was ready recording devices, and adaptive furniture, like to return to Michigan State with a clear goal. She moved into a new on-campus adding a height-adjustable table to classrooms, apartment with roll-in shower, lower countertops and easy accessibility. “I could and more. “I signed up for a class that turned now live by myself independently. I decided to get a master’s in business analytics. out to be in a building that didn’t have an It got my interest and only took one year. Those words — business analytics — are elevator,” says Martin, “so I was able to get that buzz words,” she says. “It means there is about a 99-100% chance of job placement class rescheduled for the following semester in when you have a master’s.” a building that was accessible.” With her earlier background in math and science, she got her master’s in MSU has an impressive Adaptive Sports December 2017. “I had accepted a job offer before graduating, working with and Recreation Club with a wide range of digital marketing on an analytics team. We serve all industries, helping clients wheelchair sports and adaptive recreation understand how their business campaigns are performing. I started in January options. They also host and participate in 2018, and I’m still there.” disability sports clinics, like sled hockey, water Her ultimate goal was to return to her home in Chicago and live independently. skiing and kayaking, community organized Now she lives alone in an apartment downtown, where she works. An aide comes events, and wheelchair sports tournaments. to help her three times a week in the evenings, but she does all her personal care Scholarships are available for wheelchair herself. For now she is where she wants to be. Her advice to others navigating the users, like the Education Abroad Scholarship college experience in wheelchairs? “Most campuses have resources on campus. It’s for Students with Disabilities, which gives important to connect with them. They help you help yourself to succeed.“ $2,000 awards for those enrolled in a credit- She also credits the SCI community. “The SCI community is very open. It took granting study abroad program. MSU has me a while to know I can ask anyone anything. People are willing to share their more than 900 student organizations. The experience — you don’t have to reinvent the wheel. A lot comes down to I just Council for Students with Disabilities, whose have to try this on my own. I had to realize, you are re-learning everything for the vice president is Martin, is one of them. daily things, you have to start over. It is easy to get frustrated in the beginning,” “We are an advocacy group that works with she says. “You have to allow yourself the time to know it won’t be easy the first administration to make sure the campus is as time, but give it time. And keep at it.” — Tim Gilmer inclusive and accessible a place as possible.”

JANUARY 2021 29 EPIDIDYMITIS:  What it is, how you got it, and how to get rid of it.

BY TIM GILMER

ike a cat burglar who slips in while inflammation and infection can take refers to an inflammation of one or both you sleep and is gone in the morn- over the family jewels. testicles. “Male patients who are reflex Ling, epididymitis shows up un- Young males typically contract it voiders and who have detrusor and ex- invited, unexpected, and leaves you through sexual disease pathogens, ternal sphincter dyssynergia [see expla- wondering how it got in. Worst of all, while older males, especially those with nation in next paragraph] or elevated it sticks around for weeks, maybe even a neurogenic bladder, tend to run into detrusor leak point pressures are at the months. Or, if you’re really “lucky” like problems with urine-borne bacteria. highest risk of infections. The high pres- me, it shows up again and again and But how do bacteria enter the epididy- sure against a closed external sphincter again — decades later. mis in the first place? can cause reflux of pressure, urine and My first episode began in rehab in the I spoke with two experts, Dr. David bacteria into the vas deferens and then caveman era, 1965. Lying on my back in A. Ginsberg, professor of clinical urol- back up to the epididymis and testes.” the hospital, I began feeling weird and ogy at University of Southern Califor- In layman’s language, the detru- antsy, and then came pain somewhere nia and chief of urology at Rancho Los sor (bladder wall muscle) and bladder in my urinary tract. I got sick, feverish, sphincter (which opens to allow urine and the pain intensified. That’s when I flow into the urethra) normally work realized the pain was coming from the “ together in a well-regulated system. area we euphemistically call “the groin” Spinal cord injury interrupts that sys- — reminding me of the day I was play- Inflammation and tem, often causing reflex voiding and ing shortstop in high school and caught infection can take over the elevated pressures, which can cause a bad hop in my balls. backward flow of urine and bacteria For the next week, lying there in my family jewels. into the epididymis and testes. While hospital bed, morphine became my best existing studies in males without SCI friend, but no medication could stop indicate that, compared to urinary tract the swelling. My entire scrotum got way ” infections, epididymitis is not com- oversized, with shiny skin stretched so Amigos National Rehabilitation Cen- mon, I did find one South Korean study tight I had to create a kind of tent to ter; and Dr. Michael J. Kennelly, profes- (Ku, Jung, Lee, 2006) that claims it may avoid contact with the sheets. I actually sor of urology and obstetrics and gyne- happen in more than 25% of males with began to worry that it might explode. cology at Carolinas Medical Center and SCI (see sidebar, page 33). Exaggeration? No doubt, but such is the University of North Carolina, Char- In order to better understand your the mind of a 20-year-old. Fortunately, lotte. Both are members of the Neuro- bladder pressure, both Ginsberg and when the swelling finally subsided and genic Bladder Research Group, which Kennelly suggest having a complete snuck away into the dark a couple of focuses on bladder issues in the spinal urodynamic study done in consultation weeks later, it didn’t return for a very, cord injury population. Both lamented with your urologist. As the author of very long time. Now, as I write this, in the lack of published research on epi- New Mobility’s Bladder Matters and December 2020, I’m still battling to get didymitis and SCI, and both agreed on Para/Medic columns, Bob Vogel re- rid of recurring epididymitis infections. the risk factors. peatedly advocated for the importance “Suboptimal bladder management of regular urodynamic studies. Over A UTI in Disguise can lead to higher bladder storage pres- 35 years as a super-active T10 para, The epididymis consists of tiny coiled sures, which is the most likely cause of he developed a bladder management tubes in both testicles where sperm is infection,” says Ginsberg. “From my routine that helped him almost totally created and stored. Sperm exits into the personal experience of over 25 years in eliminate UTIs, but he still fell victim urethra by way of the vas deferens, but clinical SCI urologic medicine, I have to epididymitis. when foreign pathogens, most likely E. found that bladder management meth- Shortly after turning 60, Vogel felt coli (but any number of different bacte- od and bladder storage pressure are key the symptoms he associated with the ria are possible), make their way up the risk factors for development of epididy- onset of a UTI. He had some Levaquin vas deferens and into the epididymis, mitis/orchitis,” adds Kennelly. Orchitis on hand and took it for three or four

30 NEW MOBILITY days, but it was ineffective. When he noticed a slight swelling in one of his balls, his nurse-practitioner prescribed Bactrim, but the swelling and pain continued for anoth- Epididymitis er four days, and his fever spiked at 102 de-  and Infertility grees. She switched him back to Levaquin and told him to go the ER, where they did hen Kevin Hansen got over epididymitis for the first time in 1975, his bloodwork and an ultrasound and diag- Wurologist told him he’d never be able to have children. “I had a low nosed epididymitis. sperm count following the infection, so the priority of having children was “Overall, I took about 10 more days of low,” he says. He and his wife, Connie, did not have children, but he found Levaquin and the swelling was still there,” other ways to interact with youth. He started a coaching career in 1984 and he says. “I had to be extra-careful transfer- has been involved with coaching wheelchair athletes ever since, including ring and moving. The fever and body aches Craig Blanchette, the double-amputee wheelchair athlete who won a medal at went away but the swelling was insanely the 1988 Seoul Olympics and was in a Nike commercial. “I think the loss of abil- slow to go down.” It can take as much as ity to have kids increased my incentive to have more to do with kids,” he says. six weeks or more. Hansen later became familiar with SCI issues, including how to enhance So what is his advice for others who fertility, as founder of the Portland chapter of the National Spinal Cord Injury think they might have it? “You’ll probably Association. Now he thinks his urologist’s earlier opinion was influenced by think it’s a UTI, but just as soon as you see the medical bias of the time. the slightest swelling or pain, go see your According to a 2017 study, approximately 10% of men from the general doc right away and make sure they know population who have had acute epididymitis develop persistent azoospermia it’s not acting like a routine UTI. They can (no sperm production from the infected testis), and 30% develop oligozoo- be fooled,” he says. “The key is recognizing spermia (malformation and poor motility of sperm). the swelling, and pain if you can feel it, and Scarring from infection can result in partial obstruction of ducts in the uncharacteristic fever and aches. Going to epididymis, resulting in decreased sperm count, or complete obstruction that an ER will result in your getting a urine prevents sperm from passing into the vas deferens. However, a surgical opera- culture, bloodwork and ultrasound, which tion called a vasoepididymostomy can bypass the obstruction and join the will indicate swelling. Then they’ll know epididymitis with the vas deferens to allow passage of sperm into the urethra. what to do. Be very patient and careful. It In oligozoospermia, where sperm is malformed and has reduced motility, the could take several weeks to clear up.” percentage of viable sperm is reduced, sometimes significantly, which can result in poor chances of fertilizing an egg. Scary Symptoms Even though, according to the study, epididymitis results in poor fertil- Eric Stampfli, 62, another NM contributor ity in less than 30% of men, the bottom line is not all about numbers. With and a T11 para for 44 years, had his first epididymitis, usually only one testicle is involved, meaning not all is lost. Since run-in with epididymitis about five years this study was not focused on SCI, however, chances are that males with SCI ago. He didn’t notice the swelling at first, are more likely to experience epididymitis, resulting in lowered fertility, mainly but felt sick and had a fever of 103. Know- because the resulting neurogenic bladder raises the risk factor of infection. ing he’d need a PICC line because he is Today, improved options for achieving pregnancy are more numerous than resistant to many antibiotics, he went to ever, and men with SCI are successfully becoming biological fathers in greater the ER. “I noticed the swelling in one ball numbers. New techniques that gave rise to home-use vibrators with special when cathing, so they did an ultrasound,” design and optimal frequencies have made sperm-collecting techniques he says. “I got pretty sick.” The infection performed in hospital operating rooms more of a rarity. proved resistant to the first antibiotic, and In 1985, 20 years following my first epididymitis infection, my wife and I only cleared up after doctors switched him traveled to Cleveland for a try at electroejaculation, in which my sperm, esti- to an even stronger drug. “I was maybe mated at about 30% of normal numbers, was collected in a simple operating only three or four days in the hospital, then room procedure. Then, through intrauterine insemination, it was introduced went home on the PICC line for another into my wife. Three tries over three days resulted in only one viable collection, seven days.” after centrifuging and washing semen to remove urine, and the procedure did How did it compare with a UTI? “It not result in pregnancy. Since the trip and operation were paid for out-of- was a different kind of pain, a deeper pain. pocket, we could not afford another try. But the story has a happy ending. In I wanted to throw up,” says the photogra- 1986 we adopted a baby daughter, just one day old, who has given us four pher/graphic artist. “For the first 10 days or healthy grandsons. so, it messes you up. You have to be very careful about travels. I didn’t do my normal stuff. I didn’t feel up to it.”

JANUARY 2021 31 A couple of years later, he had a second bout. This time he knew what to look for. “I caught it much faster, and it never got to being bad. They put in a PICC line, it just started to swell, fever not as bad. I noticed my scrotum was warm, even hot. I stayed home. The swelling was much less, but tender. It was a good 10 days or more before I was back to normal.” To avoid full-on infections, Stampfli urges others to listen to their bodies and heed early warning signs like autonomic dysreflexia and increased spasticity. He has problems with rest- less leg syndrome and says that infection makes it worse, and sometimes it precedes infection. Kevin Hansen of Eugene, Oregon, a 68-year-old C4-5 quad, first got epididymitis when he was a young man in rehab in 1975. He remembers his scrotum got very large and stretched tight. “It was horrible, it was scary. I had pain, dysreflexia and high blood pressure. And a high temp.” It took a couple of rounds of Cipro, an antibiotic in the same family as Levaquin, to get rid of all the symptoms. “Some of being scared was psy- chological, my fear as a young man of something going wrong down there (see sidebar, page 31).” In 2019, 44 years after his first epididymitis, Hansen got sick again. “At first I thought it was a UTI. That’s what a doc said. But it was different because of the swelling and pain. This time one of my testicles got hard on the top, like it was calcified.” Most likely an abscess had formed or partially formed — another potential complication from epididymitis. He started taking Levaquin but the symptoms lingered for a long time. He thinks

GO GREEN TO GIVE BACK! Every print subscription that converts to digital saves United Spinal Association $20 per year. If 5,000 readers convert to digital, that would drive $100,000 into our advocacy efforts and resource center!

Help us help more people — call 800/404-2898, ext. 7255 or visit unitedspinal.org/switch-to-green-give-back to convert today!

Convert your New Mobility print subscription to digital and receive these great perks: • Early access to the full magazine • Enhanced media content, such as videos • Clickable links — no need to type in URLs to find more info

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

32 NEW MOBILITY he also may have experienced a Levaquin I have resigned myself to postpone sur- side effect — tendon soreness or damage gery until I can get a vaccine. At 75, with — which Bob Vogel also suspected of his coronary artery disease, diabetes and use of Levaquin (see “Popular UTI An- an immune system most likely compro- tibiotics and Tendon Rupture” NM, June mised by 55 years of paralysis, that seems 2019). “I think it took six weeks for the like the smart move. swelling to get softer and go down,” says I have spent a great deal of time study- Hansen. “Epididymitis is not fun.” ing this weird but nasty disease. In short, it can strike at any age, but is somewhat Studies on An Unwelcome Return more likely in older males. The main  Epididymitis In 2016, more than a half-century after takeaway is to get professional help as my first epididymitis episode, swell- soon as possible. Battling epididymitis is n my research I found some studies ing, abdominal pain and sickness struck more difficult than controlling UTIs and Ithat are informative, if not conclu- again. It was late on a Thursday. In denial, fraught with potential complications, sive. A 2005 study of 140 males with I thought I could fight it off but had to go such as infertility, autonomic dysreflexia SCI found that clean intermittent cath- to the ER on Saturday when the pain and and abscess formation. It is nothing to ing — as opposed to sterile technique swelling became severe. There was also a mess with, not just another annoying — is a risk factor for epididymitis/ substantial discharge of pus from my ure- complication. orchitis. It has long been known that indwelling urethral catheter use is also thra over days — this is known as pyuria, a risk factor. However, a 2008 analysis which most often occurs in older men. Relevant Studies of 56 earlier studies concluded that An ultrasound confirmed epididymi- • Influence of bladder management on CIC has resulted in improvement in epididymo-orchitis in patients with tis. I stayed in the hospital with IV antibi- bladder infections and complications; spinal cord injury: clean intermit- otics for three days, then was discharged suprapubic cathing has since been tent catheterization is a risk factor for and took Cipro at home orally for six proven to be similarly effective. A weeks. It struck again in late 2018 and epididymo-orchitis, pubmed.ncbi.nlm. 2010 study conducted by Long Beach has been a chronic problem since. Each nih.gov/16151451 Veterans Hospital of 179 male patients infection responded to antibiotics, usu- • Contemporary role of suprapubic found similar rates of complications ally Cipro, but another infection would cystostomy in treatment of neuropathic from UTIs in both urethral catheter follow four to six weeks after completing bladder dysfunction in spinal cord use and suprapubic tube use; how- treatment. injured patients, pubmed.ncbi.nlm.nih. ever, UC use is associated more often After six successive episodes, I went gov/18551568 with urethral and scrotal complica- on a quest. Why did this swelling keep • Urethral versus suprapubic catheter: tions. This may suggest that where returning? Three different urologists choosing the best bladder management epididymitis is concerned, UC is not I consulted agreed that surgery might for male spinal cord injury patients with the best option. Overall, though, this be needed, but each one had a different indwelling catheters, pubmed.ncbi.nlm. same study suggests that an individu- plan. By this time, I had undergone mul- nih.gov/19823191 al cathing method is best selected “on tiple MRIs and retrograde urethrograms, • What are the differences between older the basis of long-term comfort for the and four more infections brought me to and younger patients with epididymi- patient and a physician mind-set that allows flexibility in managing these December 2020. tis?, ncbi.nlm.nih.gov/pmc/articles/ challenges.” The latest MRI finally showed the real PMC5419104 I also found two 2017 studies problem: a fistula — a channel, like a si- • Urogenital Infection as a Risk Factor (both from a general population), one nus tract — had formed adjoining my for Male Infertility, ncbi.nlm.nih.gov/ pmc/articles/PMC5470348 comparing epididymitis in younger urethra and now reached into my scro- and older males, and the second tum. Urinary bacteria apparently travels covering infertility as a complication from my bladder to my urethra, takes Other Resources of epididymitis, which is treated in a a detour into the fistula and ends up in • Guidance and Options for Indwell- separate sidebar. my scrotum. In my experience, apparent ing Catheter Users, newmobility. symptom-free colonizations in the blad- com/2018/03/guidelines-options-in- der can morph into full-blown infections dwelling-catheter-users in the scrotum. A fistula is not common, • Popular UTI Antibiotics and Tendon but it does happen and may be associated Rupture, newmobility.com/2019/06/ with decades of intermittent cathing. popular-uti-antibiotics-and-tendon- Because of the COVID-19 pandemic, rupture/

JANUARY 2021 33 RESEARCH By Kate Willette MATTERS

THE PRINCESS PROTEIN AND THE PIG

The October issue of New Mobility 2001, one of the more wretched sur- included a 12-page section sponsored by prises was what happened when some- Unite 2 Fight Paralysis that previewed thing touched his skin lightly: his jeans “If a scientist could the organization’s annual Working 2 Walk sliding over his legs, the sheets on our conference. The pandemic forced the bed, my hand — it was intolerably pain- develop a way conference online for the first time in its ful to him. About two-thirds of people to eliminate the 15-year history … but the event worked. with damaged cords live with some No airports, no hotels, no over- kind of neuropathic pain, and for a very glial scar, axons air-conditioned ballrooms — and unlucky fraction of those, it’s constant. could recover lost yet the experience was familiar and There are no medications that can take motivating. I’d been anxious that they it down completely, though some work connections.” wouldn’t be able to reproduce the for some people, some of the time. sense of power and excitement that Candace Floyd, Ph. D., who is comes with gathering our tribes, but I associate professor and vice chair of needn’t have worried. Over October research in the Department of Physical 22–24, 245 people from 11 countries Medicine and Rehabilitation at the showed up for the presentations, University of Utah in Salt Lake City, is which were crisply organized into com- working on something that could help. example of many possibilities. pact and sensible groupings. She likes pigs. Scientists trying to solve this problem If you wanted exposure to both the She likes them as creatures, but she have used rodents in pre-clinical work big picture of the state of research and a also likes them as a vehicle for speed- to see if their remedies might be effec- sampling of how each aspect looks from ing up the translation of research aimed tive. Specifically, they try to interpret rat down in the weeds, Working 2 Walk at healing the damage from spinal cord behavior to see if it is in pain, and if so, was the place to be. A glance at the injury. Translation, in this context, means how much pain and what kind of pain. main topics of the agenda tells the story: taking a potential treatment all the way There’s no rat equivalent, though, of clinical research, pre-clinical research, from experiments in labs to doctors in industry, funding, community organiza- clinics. The usual path starts with basic the pain scale most of us have seen at tions — all leading to a final session on science, moves to pre-clinical work in the doctor’s office. Think of the version strategy. The only thing really missing animal models, proceeds to clinical trials often shown to children, who don’t have was the loud party with the dozens of with human volunteers, and then, if all the language skills to explain how much it wheelchair users and the two free drink goes well, arrives at your local doctor’s hurts. A rat can’t point to the orange face tickets — which, as a dedicated introvert, office with full insurance coverage. to indicate that it’s severe. A rat, under was never my favorite bit anyway. If you Translation is notoriously slow, diffi- a light touch test, can only jerk its paw weren’t registered, the good news is that cult and expensive. It also routinely fails. back, or not. And there’s the problem U2FP is putting the whole thing online The fact is, after that slow and expen- of spasticity, which makes it impossible at u2fp.org. sive process, only 8% of potential thera- to know if the rat is just having a spinal pies are even marginally effective — that cord-mediated reflex or is responding to Cracking the ‘Pig Code’ means 92% of clinical trials don’t work what it experiences as pain. For this piece, I want to drill down well enough in humans to make it to on a couple of talks from the second market. At W2W, Floyd showed us how Enter the Pig grouping of the first day, because they pigs might both reduce the time spent As Floyd explains in her presentation, combine in a way I find helpful, and on those pre-clinical trials and lead to a pigs are quite capable of expressing because they’re about research that much better success rate when therapeu- themselves, and it’s possible to learn could lead to a remedy for neuropathic tics make it to human beings. She used how to read them. She describes the pain. When my husband was injured in the problem of neuropathic pain as one moment she was inspired by her pet col-

34 NEW MOBILITY lie, an animal with an impressive vocabu- that work can access and use to assess the scar surrounding an injury is enormous lary of barks that she’s easily able to dif- probable results of their own work. in terms of potential functional recovery. ferentiate and understand. What if this Floyd’s ready to collaborate. What However, ChABC is a large, complex is possible in pigs, too? Cracking a “pig she needs is other scientists who have princess produced by a little bug that code” would mean having a very useful developed interventions they believe will lives, among other places, in human animal model for research that is both work in people. intestines. It’s made up of 1,021 differ- more expressive and closer in biological ent amino acids, and occurs in at least 71 terms to people. The Princess Protein different varieties in nature. Learning to understand pigs has been Neuropathic pain after spinal cord injury Now, protein molecules like this the project of her lab in Utah, with the comes from exactly the same thing princess can be re-designed, but how aim of, among many other things, cre- that causes loss of mobility — axons does one even begin to work through all ating a sort of pig-version of that pain that used to connect and carry mes- the possible mutations? Which of those chart. In terms of pre-clinical research, sages from body to brain and back again 1,021 amino acids would need to be tar- the pig could be a bridge between all are unable to cross the injury site. The geted? If only there were something like those studies relying on rats and the painful reaction to light touch happens a Protein Repair One Stop Shop, where a much more involved and expensive because signals from nerve endings in spinal cord injury scientist could ask for primate studies. Time would be saved. the skin get distorted and amplified as expert help in sorting through the mil- Human outcome results would come they attempt to travel up to the brain. faster and be more predictable. There’s a sort of chemical/physical bar- lions of options. The first part of this project sounded rier known as the glial scar. There is such a place, and Protein kind of fun — follow lab pigs around with If a scientist could develop a way to Repair One Stop Shop is actually video cameras and microphones to see eliminate the glial scar, axons could grow its name. Using PROSS technology, what kinds of sounds they make and more normally and recover lost connec- Shoichet’s team identified the three under what conditions. How does a pig tions. Then both sensation and mobility most promising sets of mutations to signal its level of irritation or discomfort? would return. That’s the theory. ChABC. One had 37 alterations, one had It turns out that pigs have reliable ways Enter Molly Shoichet, Ph.D., of the 55 and one had 92. These mutations to communicate their inner experience University of Toronto, whose presen- were carried out, and the new versions of distress, which means that once that tation involved an intervention that were tested in the lab. code is broken, they may be able to seemed like an excellent candidate for ChABC-37 turned out to be the win- shrink that timeline of pre-clinical work Floyd’s pigs. Readers of this column will ner. The new designer molecule is both and help us understand where to invest be familiar with the protein known as more stable under higher temperatures scarce resources in human patient trials. ChABC, chondroitinase. Decades have and more active for a longer time. It can They might show us, much better than passed since scientists first understood destroy more scar, but before people can rats can, what’s likeliest to work. how powerful ChABC is in neutralizing volunteer to have it tested in their bod- Once Floyd’s team was satisfied that certain molecules that gum up the post- ies, it will need to be tested in relevant it had developed a working knowledge injury spinal cord and build that glial pre-clinical models. That’s the scientist of pig communication, it had the missing scar. These scar tissue molecules are way of saying, “We have to find some tool. They proceeded to use it to learn usually referred to as CSPGs because animals that can help us understand how how closely pigs’ experience of neuro- their complete name, chondroitin sulfate well this will work in humans.” pathic pain post-injury mimicked that proteoglycans, is a mouthful. Pigs would be a good candidate. of humans. Many people reading this When ChABC encounters CSPGs, Especially if a scientist had already taken will be able to visualize these tests: light the CSPGs dissolve. The problem is that the time and trouble to understand their touch, pin prick, vibration, heat and cold. ChABC, like many proteins, is fragile. I language and was able to provide them The pigs, with common-in-humans con- think of ChABC as a persnickety prin- as research subjects, ready to go. tusion injuries, were given these com- cess. Everything must be ordered exactly mon-in-human tests. Their responses, as the princess demands, or she simply This is the beauty and purpose of quantified and documented, provide a folds her arms and refuses to eat. The Working2Walk: Scientists who might baseline that could allow scientists with temperature is one of those things that not think of working collaboratively, who medications ready for animal testing to must be perfect. might not even know about one another, quickly close in on proof of efficacy, or What Shoichet’s team has done is can be in the same room. As Matt to face the lack of it. deploy computational software and Rodreick, U2FP’s executive director, put Floyd is not making drugs or trying to design tools to change the princess’s it in a letter sent after the conference, do basic research on the cells, proteins, preferences — to create mutations that “Candace Floyd and Molly Shoichet … genes and molecules that will govern are less fussy. Many labs have attempted are now planning new ways to collabo- recovery from spinal cord injury. She’s cre- this over the years, because the promise rate together.” ating a living tool set that scientists doing of a molecule that can break down the That’s a win.

JANUARY 2021 35 FROM NEW MOBILITY MAGAZINE AND UNITED SPINAL ASSOCIATION

WHEELSon A GUIDE TO WHEELCHAIR-FRIENDLYCAMPUS HIGHER EDUCATION

life beyond wheels

NOW AVAILABLE! • Detailed info on the Top 20 Wheelchair-Friendly Colleges, researched and written by wheelchair users • Personal stories and photos of wheelchair-using students at every school, plus advice from successful grads • Resources and scholarships for wheelchair users

FREE DOWNLOAD AT www.newmobility.com/wheels-on-campus ERVIN By Mike Ervin

“Those conducting the survey don’t ask the most WHO DECIDES THESE ‘BEST OF’ LISTS? important ques- WalletHub published its annual “Best According to the WalletHub list, I tion in my book, & Worst Cities for People with Dis- should pack it all up and move to top- which is how abilities” in September. According to ranked Scottsdale, Arizona. That place many wheelchair the first-ever website to offer free credit must be a cripple paradise. But how scores and full credit reports that are long will it remain so? The top rank- accessible bars updated on a daily basis, I’d be better ing seems to be a fleeting distinction there are.” off if I lived in Albuquerque, Yonkers since in last year’s WalletHub survey, or even Bismarck. All these cities rank Scottsdale ranked number two behind way higher on its list than Chicago, South Burlington, Vermont, and South which is where I live. Chicago comes Burlington fell to third place this year. in as only the 79th best city for people San Francisco, with its rollercoaster with disabilities. That ranking doesn’t terrain, fell from fifth in 2019 to ninth make for an enticing selling point for in 2020. And can you guess which crippled tourists. city was tops on the WalletHub list With all these lists that claim to At 79th, Chicago is pretty much in 2018? Believe it or not, it was determine the Best-of or Top 10 or the smack in the middle of the list of 180 Overland Park, Kansas. But this year, Sexiest or whatever, the first question cities, which could mean Chicago is the Overland Park came in eighth. definition of cripple-friendly medioc- This confuses me in the same way to ask is: according to whom? rity. But living in Chicago really ain’t that the annual Sexiest Man Alive WalletHub says it evaluated cities so bad. competition confuses me. Each year, based on their economy, quality of Probably the best thing about the Sexiest Man Alive is a new person, life and healthcare. It measures qual- Chicago from a cripple perspective is even though the previous Sexiest Man ity of life by applying several factors, that the terrain is flat as hell. There Alive is still alive and, presumably, just including the ratio of special education aren’t many killer, steep hills to con- as sexy as he was while reigning. And teachers per 1,000 school-aged people quer in a wheelchair, which is a big wasn’t this year’s Sexiest Man Alive with disabilities and the number of plus. Some of the hills in ninth-place sexy and alive last year? So why didn’t wheelchair accessible trails per capita. San Francisco are so steep that the he win then? Did he do something in But apparently those conducting best I could do is make it halfway up a the ensuing month to become sexier the survey don’t ask the most impor- hill by sundown, establish base camp or did the reigning Sexiest Man Alive tant question in my book, which is for the night and proceed to the top get complacent and become less sexy? how many wheelchair accessible bars the next day. And I use a motorized And just how does one quantify and there are. And it sure doesn’t look like wheelchair! When I finally make it to measure sexiness? I’ve driven myself they give cities any demerits for having the top, I’d probably feel like sticking a nuts trying to make sense of it all! killer steep hills. damn flag in the ground. So what happened to the cities Oh sure, Chicago winters suck that lost ground with WalletHub? Did I suppose it’s good that WalletHub big time. But winter can’t be any they remove some curb cuts in South sees fit to engage in this exercise every worse here than in Bismarck, and Burlington and replace them with year. But it’s going to take a whole lot WalletHub ranks it as the fifth best curbs? Are there some new killer steep more for them to make me believe I’m city for cripples. hills in San Francisco? better off in Bismarck.

JANUARY 2021 37 MARKETPLACE

120 capsules for only $25.95

R LL Celebrating 30 YEARS of the ADA July 26th, 2020 marked the 30th Anniversary of the Americans 30!on with Disabilities Act (ADA), the landmark civil rights law that protects our members and other people with disabilities from discrimination. United Spinal is proud to be a part of the legacy of the ADA. Throughout our history, we have used the ADA to fight for inclusion of wheelchair users in all aspects of our society. But there is still important work to do!

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

Bronze Wheel Supporter: Partners:

38 NEW MOBILITY CLASSIFIEDS

FOR SALE VACATIONS WHY THE MIRACLE OF LIFE NO FERTI CARE® JSJ Jeans: Specializing in St. Augustine Beach 3 bed- LONGER NEEDS A MIRACLE PERSONAL • Treats men and women wheelchair jeans. Made room condo. Great location • VA approved in Oklahoma. Call for free across from ocean in historic • Inexpensive alternative With any Ferticare, Viberect or to fertility clinics catalog. 918-379-5052 Florida North East. Recent purchase over 250.00 receive a • Help with incontinence renovation for para owner. *while supplies last FREE 2oz SANITIZER!* New Product, Electric and thru Kegel Exercise Excellent local accessible Orion Medical Group, Inc. • Ferti Care 2.0 Manual Wheelchair seat activities. For accessibility (Full D.M.E. Pharmacy Specializing S.C.I) Tel. 714-649-9284 / 1-888-64-ORION (67466) / Fax. 714-594-4038 New Female pouch, $14.99 visit www. questions please contact: Version of the cushpocket.com” [email protected]. [email protected] Ferti Care Available Now For availability, pictures www.medicalvibrator.com Nationwide Wheelchair and pricing please visit our Van Rentals. For the next VRBO listing: https://www. time you want to get out, vrbo.com/1984785 vacation, doctors appointment, or try before you buy. New Zealand Accessible Learn more at www.BLVD. Vehicle Hire. New Zealand com disability vehicles, hand control cars, left foot accel- Over 1500 wheelchair erator cars for hire. Explore Accessible Vehicles for sale New Zealand – we make at one website. A complete it easy! We are happy to selection of New, Used and pass on our former clients’ WWW.APEXEQ.COM • 800-851-1122 Pre-Owned wheelchair recommendations of vehicles from dealers and accessible activities and private parties nationwide. accommodation. See www. Check it out today. www. freedom mobility.co.nz blvd.com Ocean-front condo, PATHWAYSTOEMPLOYMENT wheelchair friendly, sleeps LEGAL six, pool, boardwalk to United Spinal Association’s Pathways to Employment (PTE) beach. Rents daily, weekly, program supports the pursuit of new job opportunities and Do you or your loved one a successful career for people with spinal cord injuries (SCI) need legal assistance for monthly. St. Simons Is., by providing the tools and support necessary to successfully GA. [email protected] injuries resulting from an overcome barriers to gainful employment. 419-569-6114. accident or medical mal- www.unitedspinal.org/pathways-to-employment/ practice? We are here to assist you in finding the best lawyer for your specific case. ADVERTISE Meet New Member Kebra Moore Call us 1-888-888-6470. WITH www.findinjurylaw.com Age 46, from Granbury, Texas NEW MOBILITY! T12 Incomplete SCI VACATIONS Author and Educator Florida Keys! Accessible 2 / To place your bedroom Waterfront Home, Why I joined United Spinal: To be with like-minded people who have various Large Bathroom with Roll-In classified ad or to get disabilities and to keep up with new events, Shower. Spectacular View, information on products and cures. Resort Amenities included. 561-627-1941. www.placid- advertising rates, call: What is the one disability-related product you access.com 800-404-2898, ext. couldn’t live without? My TiLite wheelchair because it helps me be independent. Cape May farmhouse near 7253 or email your beach. First floor entirely If you could change one thing in the world to improve quality of life for wheelchair users, what would it be? wheelchair accessible. request to mchintalla@ It would be for the FDA to approve stem cell pro- Sleeps eight. Visit www. unitedspinal.org cedures. It could make a life changing difference for beautifullyaccessible.com many SCI individuals. for more info and reserva- tions. Meet other members or join United Spinal at unitedspinal.org

JANUARY 2021 39 LAST WORD

NM LIVE OUR FIRST INTERVIEW SHOW

New Mobility’s 2020 Person of the Year, winner of Craig H. Neilsen Visionary Prize and nurse extraordinaire Andrea Dalzell wears many hats and wears them well. Now she can add the honor of being the inaugural guest on Teal Sherer’s new monthly show, NM Live. Tune in Teal Sherer and Andrea Dalzell met in 2014 at newmobility.com or NM’s social media for the rest of their conver- while attending the sation. Find out what Andrea learned about herself in 2020 that she’s ReelAbilities Film Festival carrying with her into this new year. Hear about the awkward experi- in New York City. ence she had while working as a nurse during the height of the COVID- 19 pandemic in New York City. Learn about her new foundation, The Seated Position, that she created to help bridge the gap between education and employment for those with physical disabilities. Meanwhile, five quick Qs for Andrea Dalzell: What is your favorite thing to do when you are not working? Sleep. I also like to watch movies. It’s great to turn off my phone, forget everything else that is going on, and get lost in a story. Number of pushes you have done in a day tracked on your Apple Watch? 45,000. I was in Washington, D.C., for a conference. The hotel was attached to the conference center and I went back and forth between them over 17 times that day. Dream Dinner Dates? Oprah Winfrey and Michelle Obama. What is something you are looking forward to in 2021? Finishing my master’s degree in nursing. What’s on your bucket list? To swim in the Great Barrier Reef. I don’t know how to swim yet, so that’s a big one.

Instagram: @newmobilitymag See the print Person of the Year feature starting on page 20. Twitter: @newmobilitymag Facebook: @newmobility

PLEASE REMAIN SEATED www.matbarton.com

40 NEW MOBILITY Serving the Community Since 1979 Your life gets better with Abilities Expo!

Expand your abilities with… • Products that meet your challenges • Resources you didn’t know were there • Workshops to access experts • Connections with peers FREE • Service animals that make the difference ADMISSION • Adaptive activities like sports, dance & more! Abilities.com • Register online today.

@AbilitiesExpo @AbilitiesExpo @abilities_expo

Virtual Experience Los Angeles Toronto New York Metro March 2021 TBD 2021 Spring 2021 April 30-May 2, 2021 Chicago Houston Phoenix Dallas June 25-27, 2021 Aug. 6-8, 2021 Sept. 10-12, 2021 Dec. 3-5, 2021

NewMobility.indd 1 12/9/20 10:02 AM MAXIMIZE YOUR INDEPENDENCE with the ‘My Wheelchair Guide’ Mobile App

When choosing the right manual wheelchair, one size does not fit all.

Finding the right manual wheelchair is hard, we make it easy! My Wheelchair Guide makes choosing the right manual wheelchair easier and more efficient. (*Search ‘MWG Manual’ in Google and Apple app stores to download.) Now, all the necessary tools and resources to guide you through manual wheelchair selection, delivery and maintenance are at your fingertips. This “The app will be a handy comprehensive app covers the entire process of getting a wheelchair, reference providing credible and providing ractical information to evaluate your needs, wants, and concerns practical information about usage, from beginning to end. maintenance, and health issues that THE MY WHEELCHAIR GUIDE FEATURES: wheelchair users face daily.” • Self-assessment & maintenance checklists • Customizable to-do lists — Tanya L., Physical Therapist/ • Wheelchair skills videos Assistive Technology Provider • Illustrations on wheelchair types, parts, & accessories • Critical health considerations • Organized hub that integrates the contacts essential to getting a wheelchair Our Partners: • Ability to take notes within the app using text, pictures, or voice recording • Q&A section Whether you’re a beginner or advanced wheelchair user, My Wheelchair Guide will help you discover greater health, mobility and independence. Co-developed by:

HTTPS://UNITEDSPINAL.ORG/MY-WHEELCHAIR-GUIDE/