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(US) 866-800-2002 (Canada) 888-570-1113 quantumrehab.com CONTENTSIssue 297 - June 2018

life beyond wheels

COVER STORY ERIC HOWK. THE MAN Eric Howk just won a Grammy. His band, Portugal. The Man, has two of the biggest hits of the year. And he is living his dream touring the world and 22 playing guitar. IAN RUDER sat down with Howk to find out what it’s like being one of the most visible wheelchair-using musicians in the world, what life is like on the road and what went on behind the scenes at the Grammys.

Cover and Contents Photos by Maclay Heriot

FEATURES DEPARTMENTS 4 BULLY PULPIT 18 ISS PRODUCT ROUNDUP 6 LETTERS The 2018 International Seating Symposium is history, 8 NEWS but BOB VOGEL scouted out the greatest innovations in mobility and seating so you won’t miss anything. 12 LIVE WELL 14 EVERYDAY ADVOCACY 30 ROLLING WITH DAD 16 HOW WE ROLL Her father’s broken leg provided TEAL SHERER a unique 34 HOSPITAL MEMBERS opportunity to spend time together as wheelchair users and to reflect on their relationship. 40 PARA/MEDIC 42 OUTDOOR TRACKS 36 GIRLFRIENDS 44 ERVIN ELLEN STOHL shares how the regular gatherings of her closest friends have helped sustain her and educate them 47 CLASSIFIEDS about living with a disability. 48 CRIP BUZZ life beyond wheels

BULLYBy Tim PULPITGilmer

NEW MOBILITY IS THE MONTHLY MAGAZINE OF UNITED SPINAL ASSOCIATION

PRESIDENT & CEO: JAMES WEISMAN VP OF PUBLICATIONS: JEAN DOBBS A NEW PATH FOR NEW MOBILITY In 2000, I faced a life decision: whether Ian Ruder officially becomes our new to continue teaching community college editor on July 1. He has a fresh outlook and EDITORIAL writing courses or accept the editorship of just the right leadership qualities — a wealth PUBLISHER: JEAN DOBBS New Mobility magazine. So I prayed — as I of personal experience with disability issues, EDITOR: TIM GILMER often do — that God would make my path nearly two decades of journalistic writing MANAGING EDITOR: JOSIE BYZEK clear. Many of us with disabilities, with our and editing experience, and a talent for shap- SENIOR EDITOR: IAN RUDER overriding need to live independently, reject ing stories that resonate with our readers. He ASSOCIATE EDITOR: SETH MCBRIDE the idea that God guides our lives. As for me, is also extremely well-connected with United SENIOR CORRESPONDENT: BOB VOGEL over the years I have grown to accept that Spinal chapter members and freelancers. much of my life path has, in ways beyond my Josie Byzek, always committed and com- understanding, been chosen for me. CUSTOMER SERVICE petent, takes on the newly created position The application process, trial editing and of executive editor. She is our advocacy ex- Toll-free 800/404-2898, ext. 7203 writing assignments went smoothly. I told pert, champion of diversity and indefatigable myself that either path would be right since voice of passion. And a damn good writer. teaching and editing both centered around ADVERTISING SALES what I love doing most — writing. Then came 718/803-3782 a three-hour interview with Barry Corbet, MANAGER, CORPORATE RELATIONS: “I have been extremely Jean Dobbs and then-owner Jeff Leonard MEGAN LEE, EXT. 7253 at Barry’s home in the Rockies. Afterward, fortunate to serve as AD MATERIALS: DEANNA FIKE, EXT. 7250 I flew home to Oregon and awaited their NM’s editor.” PRODUCTION decision. When Jean called and offered me the job, I realized how much I wanted it. I got PRODUCTION MANAGER: DEANNA FIKE emotional, choked up — and could not speak. Most recently she has infused new energy CIRCULATION “Tim, are you there?” asked Jean. into our online presence and social media “Yes, yes, of course,” I finally managed. platforms and eagerly steps up to meet any CIRCULATION MANAGER: BEVERLY SMITH “I’m … overwhelmed, and happy to accept.” new challenge. CIRCULATION COORDINATOR: I’ve been extremely fortunate to serve as Seth McBride is our new associate editor, MARIA KURTZ NM’s editor. Now, 211 monthly issues later, a gifted writer, exceptional athlete, world I have reached another fork in the path: At traveler (and new father), poised to grow and POSTMASTER: Send address changes to New the end of June I will retire as editor. I hope prosper with New Mobility — we all hope — Mobility, 120-34 Queens Blvd, #320, Kew Gardens NY 11415. Subscription rates: $27.95/year; $35.95/ to stay connected to the magazine, both for a long time. year in Canada; $67.95/year international via in print and online, editing and writing in a Bob Vogel, with decades of NM writing airmail. New Mobility (ISSN 1086-4741), Volume 29, Issue 297, is published monthly by United part-time capacity. and reporting experience, known for his in- Spinal Association, 120-34 Queens Blvd, #320, New Mobility has made recent changes sightful profiles, adventure, recreational and Kew Gardens NY 11415. Copyright 2018, all rights under Jean Dobbs’ leadership. The magazine, product expertise, anchors our freelancers. reserved. Reproduction without permission of any material contained herein is strictly prohibited. We newly redesigned, has a bright future. Since And our stellar lineup of columnists is a rich welcome comments; we reserve the right to edit 1991, Jean has risen from intern to managing blend of talented veterans and new voices. submissions. editor to editorial director to publisher. Her As bright as NM’s future is, we are noth- Periodicals postage paid at Flushing, NY and additional mailing offices. multiple talents, dedication and unparal- ing without you, our faithful readers. May leled experience make her the best possible your paths remain connected with ours — www.newmobility.com person to guide the magazine, and we are all and may we continue to educate, encourage www.unitedspinal.org the better for it. and support one another for years to come.

4 NEW MOBILITY life beyond wheels

CONTRIBUTORSOur Staff and Freelancers CONTRIBUTING EDITORS MICHAEL COLLINS MIKE ERVIN ROXANNE FURLONG ALEX GHENIS life beyond wheels RICHARD HOLICKY KATE MATELAN ALLEN RUCKER ROBERT SAMUELS ELLEN STOHL ERIC STAMPFLI A little eccentric, a little wild and full of soul — that’s how El- ELLEN STOHL len Stohl, a New Mobility mainstay for many years, describes BOB VOGEL herself. She also teaches at California State University, North- LOREN WORTHINGTON ridge, and is raising a beautiful 14-year-old daughter with her husband, David — roles she never thought possible 35 years ago when she took a dangerous curve on a wet freeway at COMMUNITY PARTNERS breakneck speed, shattering her spine and, at the time, her KIM ANDERSON dreams. Today she considers herself a self-actualized woman CHRISTIAAN “OTTER” BAILEY whose education, experience and life story have given her MARTY BALL unique opportunities and insights into living life fully. TIFFINY CARLSON LAWRENCE CARTER-LONG RORY COOPER MIKE ERVIN JASON DASILVA Mike Ervin is a playwright, author, activist and the one and DEBORAH DAVIS only Smart Ass Cripple. In addition to writing for NM, he TOBIAS FORREST has been published in everything from The New York Times JENNIFER FRENCH to Warehouse Executive magazine. He boasts of being ar- ALLISON CAMERON GRAY rested 20 times in ADAPT actions. He also blogs relentlessly MINNA HONG at smartasscripple.blogspot.com, where he shamelessly pro- MARK JOHNSON motes Smart Ass Cripple’s Little Red Book, which has a blue GARY KARP cover, Smart Ass Cripple’s Little Yellow Book, which has a red NANCY BECKER KENNEDY cover and Smart Ass Cripple’s Little Chartreuse Book, which has CORY LEE a black cover, all available at lulu.com. BRITTANY MARTIN LINDA MASTANDREA LYNN MURRAY TEAL SHERER ASHLEY LYN OLSON TEAL SHERER Teal Sherer is an actor and advocate for the inclusion of perform- TARI HARTMAN SQUIRE ers with disabilities in the entertainment industry. She created and MITCH TEPPER starred in the online comedy series My Gimpy Life, loosely based REVECA TORRES on her real-life adventures in Hollywood. Teal wrote her first arti- ANTHONY TUSLER cle for NM in 2008, taking readers behind the scenes of the Emmy KARY WRIGHT Award-winning film Warm Springs, which follows President Frank- lin Delano Roosevelt’s early battle with polio. She lives in Seattle with her husband and 3-year-old son. This summer, you can find her on the water with the adaptive rowing team Seize the Oar.

UNITED SPINAL BOARD OF DIRECTORS:

Want to contribute to New Mobility? Please send queries and manuscripts to Ian Ruder: www.unitedspinal.org/about/ [email protected] our-leadership/

JUNE 2018 5 Metabolism Wisdom Tech Jobs Van Brooks: Local Hero SHARE “It is good to hear of these thoughtful

innovations and thrusts.” Smartchairs: Fact vs. Fantasy

life beyond wheels

Smart Chair Innovations back, used a lovely, soft lambskin fur for the seat and color coordinated Be encouraged! It is good to hear of the duct tape for the arms. I added a these thoughtful innovations and Harley “Lady Rider” patch for the back thrusts that address the emotional of the headrest and acquired a chrome and psychological health of chair users newmobility.com APR 2018 $4 “Limited Edition” for the front. Most [“Meet the Smartchairs,” April 2018]. of the comments and conversations I Thanks for sharing. had were upbeat and complimentary in Michael Andrew Williams the mode of “you go, girl.” Now for the Newmobility.com Quantum, a friend has offered to install neon ground effects More Diet Info Needed Lori Kowalski I’ve been struggling with weight ever Newmobility.com since I wasn’t able to swim frequently. It is so hard to find information about Patient Advocacy SCI and metabolism and diet [“Making I have found that you need a patient Sense of Your Metabolism,” April 2018]. advocate — whether a professional or Thank you so much for writing this com- family member who learns the job — now that have the sand just under the prehensive article. More articles like when you are hospitalized, and then trunk and those are easier to stay on, these are needed. you have to become your own advocate but still expensive. If you can lie in a Mary Keating afterwards [“Finding My Patient Advo- couple of positions, like on your left and Newmobility.com cate,” April 19 NM blog]. It is exhausting right sides, and not put pressure on your to fight for what you need. It takes flap area, and if you are diligent about Wheelchair Vanity being tenacious to the point of wanting turning regularly and eat lots of protein, Why shouldn’t we be vain about our to give up, but you just keep going. you can probably do well on a good low- air-loss mattress. wheelchairs? People are vain about the Sheri Denkensohn car they drive, and the wheelchair is Newmobility.com Laurie Rappl really just another mode of transpor- Newmobility.com tation [“Dreaming of a Prettier Chair,” Wound Bed Advice April 2018]. I want my chair to be very I am a T12 para, physical therapist, Portable Hand Controls comfortable, to be cute (or pretty) and former clinical manager for Span-Amer- I have rented cars with hand controls in quite frankly to have people stop me ica (therapeutic bed manufacturer), multiple states over the years, always at not because they feel sorry about the and have a history of pressure ulcers a major airport [“Problems with Rental fact that I am in a wheelchair, but be- and one small flap surgery on my right Car Hand Controls,” Everyday Advoca- cause the chair is so “cool looking” that ischium. Clinitron beds are excellent cy, April 2018]. I have had companies they want to know where I got it. pressure equalizers, so if you have to flat out botch the reservation and lose Idalia Ringwal lie on the flap site, they’re the best the fact that I needed to have hand con- Newmobility.com option [“Finding My Patient Advo- trols on the car, and I’ve had to scramble cate”]. However, they are painful to lie and arrange alternate transportation on Unique Chair Deco in because you’re floating on liquid, the spot. Because of this I have begun My Jazzy Select 14 served me well sand and air. Many have experienced to carry my portable hand controls as a for nine years until I got my Quan- severe neck, back and shoulder pain. It’s backup when I fly. tum iLevel. I found bright, interesting difficult to move in it or for caregivers John Nicholas T-shirts and skirts to slip over the seat to take care of you. There are versions Newmobility.com

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ADA LAWSUITS: SHOULD SOCIETY BE WORRIED ABOUT SERIAL LITIGANTS, OR SERIAL VIOLATORS OF THE ADA? In March, the Pittsburgh Post-Gazette is all businesses should reasonably be reported on a lawsuit filed against expected to provide. the University of Pittsburgh Medical From the Lowell Sun to 60 Minutes Center, the largest nongovernmental on CBS, this same type of coverage employer in Pennsylvania, alleging surrounding ADA lawsuits is prevalent. violations of the Americans with There is often an attempt to show Disabilities Act. The lawsuit was filed balanced reporting, but the overall on behalf of Josie Badger, a wheel- tone tilts to the side of business. Take chair user with a doctorate in health- the case of the Lowell Sun, of Lowell, care ethics, who alleges that parking Massachusetts, which reported in April lot slopes, lack of appropriate signage on Dino Theodore, a man who, like and steep curb cuts, among other Badger, was suing his local hospital for violations, have limited her ability ADA violations, and had already sued to fully and equally access many of many of his region’s businesses for UPMC’s locations. similar violations. The Sun paints the The Post-Gazette’s article shares sheer number of lawsuits as a problem “There’s no mainstream a tone with many stories on ADA with the individual and his attorney: lawsuits from around the country, “The hospital is just one in a long media coverage of the and is illustrative of the way that the list of companies in Massachusetts and systematic inaccessibility mainstream press often portrays these New Hampshire — there have been lawsuits and those who file them. more than 50 over the past decade — of our healthcare “UPMC has become the latest target that Theodore and [lawyer Nicholas] system. Instead we get of a disability-rights activist who has Guerrera have sued in federal court retained a Pittsburgh-based law firm over their compliance with the land- articles about the local to sue nearly two dozen corporations mark disability rights law. wheelchair user who’s in federal court in recent years over “The work has earned them a alleged violations of the Americans reputation as shysters among some brought dozens of with Disabilities Act,” reads the lead of those on the other end of their lawsuits on unsuspect- sentence of the article. lawsuits.” The article immediately frames Usually when a news publication ing businesses.” UPMC as the victim in this story with wants to make a point, it will use a the use of the word “target.” The yet quote to let a member of the public unnamed disability-rights activist, with make it for them. But the Lowell Sun rights movement, but language mat- her dozens of similar lawsuits, is thus doesn’t even bother with that. If who- ters, and the language used from the cast as a pesky interloper, clogging the ever called Theodore such a loaded beginning of the article makes a clear legal system with the minutiae of park- term as shyster didn’t want to be point: ADA lawsuits are a problem, one ing lot angles and ramp measurements. quoted, why would a reporter feel it that isn’t the fault of the business. It’s as if, regardless of what the law — necessary to insert it into the article? No effort is made to frame the now nearly three decades old — actu- The article actually goes on to pres- sheer size of the access issue, or to ally requires, a minimal effort at access ent a decent overview of the disability ask a simple and valid question: What

8 NEW MOBILITY articles about the cute local bistro or hair used. He also spent thousands of dollars salon that has two steps to enter and in attorney’s fees.” whose owners offer casual indifference The report makes no mention of the when asked if there’s an access ramp. size of the manuals for building code Instead we get articles about the local and worker safety regulations and what wheelchair user who’s brought dozens seemingly trivial things they might cover. of lawsuits on unsuspecting businesses. Businesses accept these regulations If wheelchair users alone were to bring a because they know they have to comply. lawsuit every time they encountered an Multimillion dollar settlements could ADA violation that substantially limited their access to a business or other public potentially await those who decide to accommodation, our courts would be flout worker safety rules or modify build- backlogged into the next decade. ings so that they no longer meet code. But if a business restripes its parking lot The 800-pound Gorilla to remove or lessen accessible spaces, The hulking backdrop to all of this is or never bothers to install a pool lift, the H.R. 620, a piece of legislation that only punishment it typically faces is hav- Republicans in the U.S. Congress have ing to provide the access the law already been trying to pass for years, and demands. At worst, it may have to pay finally jammed through the House of opposing attorney’s fees and nominal, Representatives in February. The bill was state-restricted settlements, as in the sold by its backers as an attempt to stop case of the noncompliant hotel owner. so-called “drive-by lawsuits,” in which To cast that same owner, or any an attorney and plaintiff sue large num- other business owner as the victim, is bers of businesses for ADA violations. The law would allow businesses up to both reflective of, and helping to fuel, a four months to start making “substan- larger attitude in which providing mean- tial progress” toward removing barriers ingful access for people with disabilities before they could be sued. is seen as more trouble — and expense H.R. 620 was no doubt helped along — than it’s worth. H.R. 620 is that atti- percentage of businesses are still in vio- by Anderson Cooper’s 60 Minutes report tude codified at one of the highest levels lation of the ADA? As wheelchair users on drive-by lawsuits, a veritable parable of government. Regardless of whether across the U.S. know, the numbers of the ignorance of nondisabled society a companion bill ever makes it past the aren’t good. Even looking just at doc- to the needs of those with disabilities. Senate and into law, it represents a tor’s offices, a 2013 study by Tara Lagu, It places the ADA — with its “275-page troubling window into how a powerful manual that details everything from the Ph.D., a researcher at the University of segment of our society views the frame- Massachusetts who has written exten- exact height of a mirror in a bathroom, work that supports the civil rights of the sively on public health, found that near- to the maximum thickness of carpeting, disability community. ly a quarter (22 percent) of subspecial- to the angle at which water can come — Seth McBride ists reported that they would be unable out of a drinking fountain” — squarely in to accommodate a specific patient with the frame of bureaucracy and regulation a mobility impairment. That’s a rather gone amok. Resources shocking number, one that deserves to Perhaps along with these examples, • “UPMC becomes latest target of dis- be mentioned when framing the story it would be relevant to share how carpet ability-rights activist suing over alleged of specific lawsuits, but rarely is. Given thickness may have a large effect on ADA lapses,” www.post-gazette.com that they’re in the same state, perhaps a wheelchair user’s ability to get from • “From a wheelchair, Lowell man’s a point A to B or, when you think about the Lowell Sun should have contacted force for accessibility,” www.lowellsun. Lagu to get some much-needed context it, what exactly is the point of a mirror if com for its story. you can’t see yourself in it? • “What’s a ‘Drive-By Lawsuit’?” www. If it feels like we are picking on the In one segment of the 60 Minutes cbsnews.com/news/60-minutes- Lowell Sun and the Pittsburgh Post- piece, the audience is made to feel for a Gazette, we are. But unfortunately, hotel owner who “says he didn’t know americans-with-disabilities-act-lawsuits- this kind of myopic reporting is all too he was required to install” a pool lift, and anderson-cooper ordinary. There’s no mainstream media after being sued by a serial litigant, we • “Access to subspecialty care for coverage of the systematic inaccessibility are told that he ended up “paying $3,000 patients with mobility impairment: a sur- of our healthcare system, and too few to buy a lift, that so far, no one has ever vey,” www.ncbi.nlm.nih.gov

JUNE 2018 9 MEMBER BENEFITS unitedspinal.org

United Spinal Association is dedi- CHAPTER NEWS cated to enhancing the quality of life of all people living with spinal cord injuries and disorders (SCI/D) TAKE A LOOK AT THIS FILM by providing programs and services that maximize independence and “If I’m with the right enable people to be active in their person, I don’t feel like communities. I’m paralyzed.” So says Push Girls BENEFITS INCLUDE: star Angela Rockwood, one of 17 people Personalized Advice and Guidance who share their most Peer Support intimate and honest Advocacy and Public Policy perspectives on love and disability in the Veterans Benefits Counseling new film, Take a Look Accessibility Advocacy at This Heart. The film, by director and pro- Local Chapters ducer Ben Duffy and New Mobility magazine executive producer Informative and Educational Dan Garcia, is 98 per- Publications cent done, according to Garcia, after over a Ongoing Educational Webinars year of relentless work. He and Duffy have Membership in United Spinal been raising funds Association is free and open to to secure the rights all individuals who are living with to music for the film, SCI/D, their family members, work on final edits, friends, and healthcare provid- ers. Visit unitedspinal.org or call and get the word out 800/962-9629. across the country. A crowdfunding United Spinal has over 70 years of campaign on Indiegogo experience educating and empow- earlier this year raised almost $4,000, and United Spinal Association ering individuals with SCI/D to donated $2,000. The duo is still looking for funding and working to set up achieve and maintain the highest screenings across the country. If you are interested in donating you can levels of independence, health and do so through the New York City Chapter of United Spinal Association personal fulfillment. We have 50+ at www.nycspinalcord.org/donate-2/take-a-look-at-this-heart-fundraiser. local chapters and 190+ support If you are interested in arranging a screening in your community, or simply groups nationwide, connecting want to watch the trailer or find out more about the movie, visit the offi- our members to their peers and fostering an expansive grassroots cial website at www.takealookatthisheart.com or email Garcia at dangar- network that enriches lives. [email protected]. “We’re almost there,” says Garcia. “We just need some help to make that final financial push.”

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Continence Care People First LIVE WELL By Josie Byzek

HEALING THROUGH ACTIVISM, MEMOIR WRITING DIANE KETELSEN Back in 1977, HolLynn D’Lil was one of hundreds LOVES A CHALLENGE who participated in the historic demonstrations to get Section 504, one of the earliest disability rights regula- Aspiring sports photographer Diane Ketelsen, 31, was studying fash- tions, signed. “It changed my whole life when I became ion design at University of Oregon when she took a photography an activist, and that felt really good,” she says. class, and it changed her direction. “I fell in love with the photograph- Now D’Lil (center in photo above) has gathered up ic image and I knew it was something I wanted to get into,” she says. her memorabilia and self-published it in Becoming Real in Although she wasn’t sure right away what she wanted to photo- 24 Days: One Participant’s Story of the 1977 Section 504 graph, she did know she didn’t want it to be easy. “Being a person Demonstrations for U.S. Civil Rights. The book contains with a disability, I grew up in a family where I wasn’t really encour- first-hand documentary and oral history that will make aged very much, so I like the challenge of photographing sports disability studies students very happy. because it forces “It was healing to write this book,” says D’Lil, 72, a T5 you to react para from Graton, California. “When I came into my dis- fast,” says ability, I lost my civil rights. I was 22, and I felt like I was Ketelsen, who thrown back to when I was younger than 18 again. I was has cerebral dependent, treated differently — there is a lot of dam- palsy. “When age that occurs to our self-esteem. So much stigma was I’m photograph- associated with disability.” Writing the book, she real- ing an event, I get ized much of that stigma has been turned around by the lost in the moment of activism: “I’m very proud I did what I did and persevered, capturing that action, and so proud of everybody who got involved.” that emotion. There’s Does she think she is “real” now? “Yes, I am. And a sense of freedom steadily becoming more so every day.” Learn more at when I have a camera becomingrealin24days.com. in my hand.” Ketelsen uses her Amysystems track hybrid when shooting KAYAK PADDLE SOLUTION events since it’s faster and more functional over mixed surfaces than her manual. Also, she shows up an hour or two ahead of time. “That Angle Oar offers two mounted paddle systems to make way I can get set up, decide what the lighting is going to be and what recreational, adaptive kayaking much easier for people the shutter speed should be. That gives me more preparation to get with limited arm motion or stamina. consistency in my photographs,” she says. The first, Versa, features a paddle that can be kept Also, even though Ketelsen wants to be challenged, she’s realistic straight or angled in a sort-of tee-pee shape, which allows about what she can physically do. “With my disability, sometimes the for much less range of motion. The mount lifts upward to camera gets heavy, I get tired. Sports is very intense, very fast, so I make getting into the kayak a bit easier, and the unit can tell myself if I miss the shot, it’s OK.” be removed with a pin. The second, Gamut, uses Ketelsen is the administrative The Versa system YakAttack RotoGrips to hold the kayaker’s own assistant at Emerald Art Center paddle between two soft rollers. It’s positioned in Springfield, Oregon, where she between the legs, so is not recommended for shows her work. “They are helping kayaks that have built-in cup holders or other me grow in my communication and such features in the center of the boat. passion and I’m very grateful for Sit-in kayaks use a hinged mount that them,” she says. “I’m blessed to be attaches on the cockpit rim and sit-on-tops use a able to work there and be part of plate mount that is secured to the kayak’s floor. that community.” Follow her jour- For more info, including a list of most compatible ney at dketelsen.wordpress.com. kayaks, go to www.angleoar.com.

12 NEW 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

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JUNE 2018 13 EVERYDAY By Michael Collins ADVOCACY

SMALL TOWN ADA VIOLATIONS: “It is not unusual BUILDING A GROUP CASE to find property Q. I am a wheelchair user in a town as “troublemakers.” We only want to with fewer than 50,000 people. I have exercise our right to access and enjoy owners who change a lot of problems accessing local busi- the society we live in. parking lot striping nesses and restaurants, with many Our latest concern is legislation acting as if access laws are not in being considered by Congress that and, in the process, existence, or do not apply to them. would seem to take away our ability to remove or diminish Barriers include step entries, door sue or get access created in a timely handles that I cannot grasp, doors manner when it comes to ADA viola- the number or size that require too much pressure to tions [HR 620, which passed the U.S. of the required open and, for those businesses that I House of Representatives]. Worse yet, can enter, restrictive seating and inac- I hear that similar legislation is being accessible spaces.” cessible restrooms. drafted to present to our state assem- Unfortunately, I am not alone in bly that would cover our state’s access my concerns, as many of my friends laws as well as the ADA. While we who use wheelchairs or other mobility hope these bills do not become laws, devices, or even those who are blind, my friends and I are trying to decide face similar problems when seeking how best to gain the access we need accommodations or trying to frequent here at home. We’re currently talk- Act and in many state civil rights said businesses. I am not a shy person, ing about taking this on as a group, laws or building codes that are “sub- so when I run across these problems so that several perspectives can be stantially equivalent” to the ADA. I try to bring them to the attention of addressed. That might also make it a Public facilities that are owned by the business owner or manager. I try bit harder for the media to accuse any the city, county or state should not to demonstrate the problems I encoun- one of us of simply making trouble be overlooked, either. Even though ter and recommend solutions that without having a valid complaint. Do much of what these government will improve, or create, the access my you have any suggestions about the entities do is covered by Title II of friends and I need. best way to go about this? Do you the ADA, they need to comply with We have discussed filing com- think this approach might work? the same architectural guidelines. plaints or taking an egregious violator — Frustrated, and That would include such features as to court, but are wary of what might parked at the doorstep transit stops, the city hall, recreation happen to us in this smaller communi- centers, parks, curb ramps, sidewalks ty. I have read about other people and our concerns are definitely and municipal parking garages. their attorneys who file these types of valid, and widespread I have not heard of anyone using complaints and how they are branded Ythroughout the disability the type of approach that you are negatively in the local press and some- community. The types of businesses considering, except in major class times even prevented from bringing that you have mentioned are classi- action lawsuits that include a large subsequent lawsuits in front of those fied as public accommodations since number, or class, of plaintiffs who same judges. My friends and I don’t they sell or rent goods or services to are disabled. Your idea makes sense want to go through that, as it would the public. They are covered by Title but would require some preparation seem to put us at risk of being branded III of the Americans with Disabilities on the part of you and your fellow

14 NEW MOBILITY team members. Taking this on with- plans prior to construction and also Did You out being fully prepared will simply to follow up to make sure that struc- result in disappointment if someone tures follow approved plans. KNOW... accuses you of making recommenda- The ADA Architectural Guidelines, tions that are not within the law or as well as many state building codes, that would not hold up in front of a are readily available online. Printing judge or jury. out a copy of the sections that cover If your goal is to correct the con- what you find and providing them to ditions, here are the steps that I the property owner or business that consider important. Please remember is out of compliance will not take that that these are simply a layman’s rec- much time. ommendations, and not derived from In those instances where there is any other source: • Assure that those who join you an applicable state law, you may hire an attorney and sue in a state court. Disability in this endeavor can provide multiple etiquette perspectives. As one example, it State civil rights laws may allow the Tips On Interacting With People With Disabilities would not be helpful if you only con- payment of an award to the plaintiff, Understanding the (ADA) sidered access for people who use plus attorney’s fees. You can check Americans with Disabilities Act wheelchairs and ignored conditions at that out through the state’s National the same location that might impact Disability Rights Network office or a people with vision loss. knowledgeable attorney. • Learn the applicable laws and As I have explained in previous regulations, state and national, and Fire Safety for Wheelchair columns, the U.S. Department of Users at Work and at Home how to determine if features are out Justice, as the top law enforcement of compliance with either. Find some- agency in the country, can take A Publication of one with real experience working action against entities that are the with the architectural guidelines, and subjects of ADA violation complaints. get them to train you about how to The steps the DOJ takes may include take measurements and record what civil action in a federal court, but its you find. It is best if the person tutor- ing you has received some formal primary goal is to eliminate the recur- A Publication of training about the requirements. rence of those violations through • Watch for features that might arbitration or mediation. Settlements have been changed after they were have been reached in many DOJ United Spinal Association approved by a building code inspec- cases, and these are available for tor or public works department. reviewing on the DOJ’s ADA website. produces more than 30 This might include parking facilities It is important that you file a DOJ brochures and pamphlets that do not have enough overhead complaint along with whatever other on subjects like Disability clearance to allow access with a action is taken. Without a record of raised roof vehicle. You will also multiple complaints, the DOJ cannot Etiquette, Fire Safety find that once constructed, it is not assume that these violations are a for Wheelchair Users unusual to find property owners pattern or practice within the indus- at Work and Home and who change parking lot striping and, try. Good luck with your plan, and let in the process, remove or diminish Understanding the ADA. us know how it works out. the number or size of the required You can download them accessible spaces. for FREE or order printed If the property was constructed Resources after the effective dates of the ADA • National Disability Rights Network: copies on our website at or state laws, include the city or ndrn.org/index.php www.unitedspinal.org county authorities in whatever com- • DOJ ADA resources: www.ada.gov plaint or lawsuit might occur. They • Filing an ADA Complaint: www.ada. have a responsibility to approve the gov/filing_complaint.htm

JUNE 2018 15 HOW WE ROLL

FATHER, COACH, TRAVELER Ed Suhr

Ed Suhr, 55, is originally from Brooklyn, New York, and now lives in Portland, Oregon, but his life has taken him all over the world from China to South America, Europe to New Zealand.

Travel Advice: Stay Flexible The best advice for managing life and travel with a disability, Suhr says, is something he learned while he was a cadet at the United States Military Academy at West Point: “Stay flexible and keep a sense of humor.” It’s a motto that has served him well in the 30-plus years since he sustained a C5 SCI near Fort Benning, Georgia, a few months after Wheelchair Rugby team, in 1995. “We ended up in a less he’d graduated from the academy. West Point is designed than ideal hotel situation. We were dropped off at the wrong to push your mental and physical limits. “You need to be boat stop, and had to get carted over 10-12 flights of stairs able to embrace the suck,” Suhr says with a laugh. The same just to get to it. The hotel was virtually inaccessible — some applies to the years after his accident. “There are so many rooms were glorified closets. There was an elevator, but we potential frustrations that we have, if we’re not ready to had to take wheels off just to fit in. A lot of the guys packed take those with a little bit of humor and some flexibility, their bags and left the next day, but a few of us stayed, along we’re going to be screwed.” with one of the nondisabled team staff. It might not have Perhaps the most obvious times that abiding by this maxim been perfect, but we enjoyed the next few days and got to comes in handy is when traveling, as Suhr has often used see Venice. If you’re not able to adjust and go with things, international wheelchair rugby tournaments as jumping-off sometimes you’re going to miss out.” points to see the wider world. Suhr relates the time when he That willingness to be flexible has stayed with Suhr as traveled to Venice with a group of quads, members of U.S. he’s become a father. Suhr met his wife, Trisha, a physical

CAN’T LIVE WITHOUT: Ergo seating [an alternative ON LEADERSHIP: If our commu- method of angling seat tubes, offered by many manual nities are going to thrive, every- wheelchair manufacturers] makes a huge difference for me. one needs to contribute in their I’m way more stable and it’s much easier to push. I think my own way. Sometimes people need posture’s better, which makes my breathing better. to be led along that path.

16 NEW MOBILITY HOW DID I GET HERE? Put Me in, Coach

Suhr has coached at all levels, from local teams happy to win a single game to national championship and Paralympic gold medal winning squads. These days, he coaches his son’s youth basketball team.

Suhr didn’t have much of a choice about becoming a coach. “I started coaching rugby in ’91,” he says. “The sports director of the EPVA at the time was coaching us and he needed to get back to doing more of his job, so he kind of dropped it into my lap without even consulting me. All the guys were comfortable with it, Suhr and his so in the long run it ended up working out better for sons, Daniel everyone.” and Conor, tour Stirling But the most valuable thing he sees in sports has Castle, a short nothing to do with the outcomes of games. “It’s about distance from giving people the opportunity to grow in different Edinburgh, Scotland. ways,” he says. “They can come out and be active, and learn from their teammates. At a practice people aren’t bitching about how bad life in a chair is, they’re having fun and competing. People with new injuries, or even someone who doesn’t start playing until therapist, at a rugby tournament. Together they have many years after an injury, can really learn from that. twin boys, Daniel and Conor, now 13. “After the 2012 They learn how to be more positive and proactive.” Paralympics, we all went to Edinburgh, Scotland, with Trisha’s parents. One day Trisha and her parents went wandering in the city. I hung with the boys so they could get some school stuff done and asked them if we should go to a restaurant near the hotel, but they wanted to go to a pub we had been to a few days before. Conor liked the hamburgers, and Daniel wanted the haggis. Of course, the pub was a steep, hilly mile or so away, but I told them, ‘If you can help me get there …’ We ended up having a lot of fun as all three of us pushed my chair up the hills and over the cobblestones.”

I’ve been a member FAST AS A SPEEDING GLACIER: WHY I JOINED UNTED SPINAL: My rugby nickname is Glacier. Since since before there was a United Spinal! I first got involved it’s self-inflicted, I have to be OK with with the EPVA because they had a big presence in the it. Describe your speed as “glacial” one rehab hospital, and they got me motivated to go do stuff time and bam, instant nickname. outside of the hospital. But I stayed involved because it was a good way to help people move forward after their injuries.

JUNE 2018 17 United Spinal Association’s 7th Annual

On Capitol Hill

THANK YOU TO OUR SPONSORS

full color

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A special thanks to NRRTS for sponsoring this year’s Roll on Capitol Hill Program Booklet. ISS New Products Unveiled BY BOB VOGEL

The 34th International Seating Symposium returned to Van- But the real draw for many is the exhibit hall — think the couver, British Columbia, March 6-9, offering a glimpse of ultimate Abilities Expo — where manufacturers showcase the latest and greatest and what is to come in the seating their newest products and technology. This year, 75 exhibi- and mobility field. With close to 100 educational sessions tors filled the hall, giving attendees a hands-on opportunity and workshops covering a wide spectrum of mobility- to evaluate the coolest adaptive equipment and new tech- related disability subjects, ISS is a must-attend event for nology, from manual and power chairs, to cushions, acces- physical and occupational therapists as well as seating and sories and more. Here is a look at some of the products that mobility technology providers. stood out this year.

Seating iShear Introduced to the U.S. market in March 2017, iShear provides clinicians a way to identify, quantify and reduce shear with a system that looks similar to a pressure mapping device. An iShear mat is placed under the wheelchair cushion and it measures shear forces, which are shown in real time on a laptop or tablet. Minimizing shear is vital for avoiding pressure sores because shear can cause tears in tiny blood vessels deep in the tissues. This can cause an injury that manifests as a major skin ulcer, which often erupts with no sign or visible warning. The iShear system enables clinicians to adjust seating and positioning to minimize shear and lets wheel- chair users and/or caregivers view shear forces on a screen, as they are happening. They can also see how changes in posture and movements can reduce shear, hopefully devising ways to keep it to a minimum. At press time, iShear is in use at five rehab centers and by 10 seating professionals in the U.S. It is an item you may want to ask about prior to your next seating eval. MSRP of the system is $2,365. iShear, ishear.com Ride Designs Java and Custom 2 Cushion When it comes to enemies of skin integrity, add heat and moisture to pressure and shear. Ride Designs, known for outstanding skin protection, has taken the successful ventilation channel from its flagship cushion, the Java, and included it as an option to the Ride Custom Cushion 2. In both cushions, the ven- tilation channel provides even more airflow to Ride’s breathable spacer fabric cover, and the combination helps keep skin dry and cool in any climate. MSRP for Ride Custom Cushion 2 is $1,590 and is covered under Medicare. The ventilation channel is a $147 option that can be bundled in Medicare pricing. Ride Designs, ridedesigns.com Certain products, like ultralight- weight manual chairs [CMS K0005] CoolCore require very specific letters of Stealth Products is creating an environment for healthier skin by justification, and clients should reducing heat and moisture using CoolCore, a unique, patented discuss the amount Medicare material, in the covers of its line of cushions, which range from con- allows vs. the actual price of the chair including desired options toured foam to gel. CoolCore’s breathable fabric helps remove heat with their provider prior to and moisture by wicking away moisture and hastening evaporation ordering. Medicaid coverage is to help keep the skin cool and dry. less certain, as coverage is up to MSRP varies by cushion — from $375 to $500 — and they are each state, and they are often on covered under Medicare. extremely tight budgets. Stealth Products Cushions, stealthproducts.com/522/

APRIL 2018 19 JUNE 2018 19 AllRounder 02 Skin protection is vital, especially when we are out of our chairs. The AllRounder 02 cushion made by Vicair, a company in the Netherlands, is perfect for this because it acts like a protective shoe for your butt. Like the original AllRounder, the 02 has five chambers filled with hundreds of “smart cells” — tiny air packages that distribute pressure. Improvements to the 02 include leg and waist straps made of tough, heavy-duty material with super strong buckles. The outer shell is also made from durable material, and it’s waterproof and washable. Available in small, medium and large sizes, the AllRounder 02 is great for activities ranging from play- ing on the floor with your dog or kids, to camping, sailing, or any activity where you aren’t in your chair. MSRP is $268, plus shipping from the Netherlands. Vicair AllRounder 02, vicair.com/product-detail/vicair-allrounder-o2 Mobility Matrx MX2 Back Matrx MX2 backs, by Invacare subsidiary Motion Concepts, are made of carbon fiber and are ultra-light- weight. They provide the postural support of a rigid back and are engineered to employ carbon fiber’s ability to enable subtle flex and dampening, which translates to a smooth ride. In addition, the shell has cutouts for extra breathability. The backs match chair widths from 14 to 18 inches and are available in heights of 16, 12, 9 and 6 inches — likely the shortest commercially available carbon fiber back. Mounting options include fixed or quick-release, and mounting can be adjusted in terms of height, depth and angle. MSRP is $795-$940 depending on hardware, and it’s covered by Medicare. Motion Concepts, motionconcepts.com

NAVIONE Power Assist Wheels Yamaha’s NAVIONE power assist wheels fit most manual wheelchairs and come as a package that consists of two quick-release wheels and a battery pack that is mounted under the chair. Control input comes from the push rims, and pushing on the rims engages power assist. NAVIONE’s unique features include “wheel-to- wheel communication,” meaning the wheels can be programmed to adapt for wheelers that have uneven arm strength. The system also features rollback prevention, downhill speed control, extra power on uphill sections and stability control to keep the wheelchair tracking straight on off-camber surfaces and side slopes. The total weight of the system is 34 pounds, and battery weight is approximately 6 pounds. Battery range is 12.5 miles for nickel batteries and 22 miles for lithium batteries, and speed is programmable up to 4 mph. MSRP was unavailable at press time but should be on Yamaha’s website by June 1. Medicare coverage is pending; approval is expected by June 1. Yahama NAVIONE, yamahanavi.com

Catalyst 5Vx Folding Chair Ki Mobility has redesigned its Catalyst 5Vx folding wheelchair. It features double cross braces for a rigid ride, an axle plate that gives 2 inches of center-of-gravity adjustment in half-inch increments, 5 inches of rear seat height (seat angle) adjustment, and 4 degrees of camber adjustment. Made of 7000 series aluminum, the Catalyst 5Vx weighs 24 pounds and has a transport weight of 13.9 pounds with the rear wheels unattached. It comes in seat widths from 14 to 22 inches and depths of 14 to 20 inches. Among its very cool options are a single anti-tip that easily swings out of the way, and side guards made from foam padded aluminum or carbon fiber. Another option are its “transit wheels” — roller blade wheels that extend below the rear frame, making the chair at least 7 inches narrower for navigating ex- treme tight spaces and doorways when the rear wheels are removed. MSRP is $1,895 and it’s covered by Medicare. Ki Mobility, kimobility.com

20 NEW MOBILITY Quickie 7 Series Although they have been available for a few years, the Quickie 7 series rigid chairs by Sunrise Medical caught our eye. Each 7-series frame is custom designed and built for the end user from 7000 Series aerospace alumi- num that is heat treated to increase strength and enable using thinner, lighter weight tubing. This makes it 18 percent stronger than previous designs and creates a chair that weighs a mere 18.89 pounds, with a transport weight of 11.1 pounds for the 7R. Experienced wheelers who know their exact dimensions can order the non- adjustable, fixed-back 7RS that drops the weight by 1.1 pounds. Available in widths from 12 to 20 inches. Among the cool options is the Freestyle Backrest, a center mounted rigid backrest that enables a wider range of motion. The 7R MSRP is $2,495, the 7RS MSRP is $2,795, and both are covered by Medicare. Sunrise Medical, sunrisemedical.com TiLite Pilot Instead of taking an adult-sized chair and making it smaller, TiLite by Permobil designed its newest chair for kids, the Pilot, from the ground up. Among cool features are front caster arms that enable the chair to grow in width and depth as its user grows, and also allow better centering over the rear wheels for push- ing. The Pilot employs carbon fiber seating and frame components to keep it lightweight — its transport weight is 11 pounds. It comes in widths of 8 to 14 inches and depths of 9 to 15 inches. The official launch, including website info, will be in mid-2018. MSRP is approximately $2,800, and it’s covered by Medicare. TiLite, permobilus.com/products/manual-wheelchairs-by-tilite/ Veloce The Veloce is a relatively new addition to Motion Composites’ line of fully adjustable carbon fiber wheel- chairs. The total weight of the Veloce is 17.6 pounds and transport weight, with the rear wheels removed, is 11.98 pounds, making it one of the lightest folding wheelchairs around. The Veloce is a folding chair with a minimalist look, energy efficient ride and quick responsiveness of a rigid chair. That’s in part possible thanks to the oval shaped cross tubes and oversized pivot axles. Made of T700 high-modulus carbon fiber, the Veloce is strong and nimble, yet dampens minor vibration in a way that is unique to carbon fiber, resulting in a smooth, quiet ride. Additional standard features include single sided caster forks, rubberized hand grips for easier transfers, integrated impact guards in high wear areas, and a one-piece footrest that folds up as the frame is folded. Available in widths from 14 to 20 inches and depths of 14 to 20 inches, the MSRP is $4,795, and it’s covered by Medicare. Motion Composites, motioncomposites.com Gadgets Kinova Robotic Arm Kinova offers a robotic arm with a three-fingered hand that greatly increases independence for people with limited or no hand or arm function. The device mounts to a power chair and is controlled by the wheelchair system — joystick, head control, sip-and-puff or any other type of controller. The robotic arm provides greater daily independence and less dependence on caregivers by enabling a user to accomplish a wide array of daily living tasks. These range from scratching one’s nose or adjust- ing glasses to eating and drinking, picking things up, pushing buttons for doors or elevators, to holding a phone or camera. MSRP is $82,300. Mark Clark, Kinova regional account manager, explained it could be covered under Medicare but nobody has tried it yet. Clark also said it has been covered under private insur- ances and by the VA.

Kinova, kinovarobotics.com

Editor: New Mobility’s policy is to disclose author-product relationships when appropriate. Accordingly, Bob Vogel recently became an ambassador for Motion Composites. He received an Apex wheelchair in exchange for feedback and promotion of the chair on various social media platforms; he will also be a paid representative of Motion Composites at up to three disability expos. The Apex is not the wheelchair described in this article.

JUNE 2018 21 Eric Howk.The Man By Ian Ruder

ric Howk misses his dog and the Seattle home they share. As the guitarist for hit band Portugal. The Man, Howk has been on the go so much for the last 18 months, he has barely had time to see either. In fact, he has spent so much time on the Eroad that the Uber app on his phone is convinced he lives in The LINE Hotel in Los Angeles. Howk estimates that between concerts, media bookings and other gigs, he made more than 365 appearances, all over the world, in the last year alone. Among the high- lights, the band brought the house down with a perfor- mance at last November’s American Music Awards and then surprised even themselves when they won Best Pop/Duo Performance at the 60th Annual Grammy Awards in January. Such is the life of a rock star. And after a whirl- wind year that saw the band skyrocket from indie sensation to mainstream success, that is exactly what Howk, 36, has become. It’s a life Howk has stubbornly pursued since he was a teenage gui- tar prodigy in Wasilla, Alaska — not so much the Grammy and the fame, but making great music and touring the world with friends. “It’s a damn good life. Even when it’s terrible, it’s all right,” he says. It would be easy to marvel at how Howk accomplished this despite sus- taining a spinal cord injury in 2007, but after talking to him and the people who know him, the more interesting story may be that no one ever really doubted he would. Photo by Maclay Heriot Maclay by Photo

22 NEW MOBILITY Photo by Greg Ketterman/1304 Photos Eric Howk.The Man

JUNE 2018 23 cord injury. While the injury unofficially I had my hands,” he says. “And if I didn’t Live from the ICU tabled the discussions about joining have my hands, I’d work my way up to Unless you have been living under a Portugal. The Man, there were signs all being a world premiere slide guitarist or rock, you’ve undoubtedly heard Howk’s around that it did little to slow his musi- something. I’d figure something out.” riffs on one of Portugal. The Man’s two cal momentum. Howk learned to sit slightly off-kilter smash hits, “Feel It Still,” and “Live in Before Howk even started rehab at to maintain his “floppy” balance while the Moment.” With a throwback rock Harborview Medical Center in Seattle, playing, and often rolls without his vibe and the catchiest chorus of the an impromptu visit from some of his chair’s right armrest to accommodate year, “Feel It Still” quickly became the friends led to what was perhaps the first the body of his guitar. “It’s like so many earworm of 2017, finding its way into ads recording session conducted in a major things, there’s a period of adapting and for everything from Apple to Vitamin trauma center. “I knew they were com- a good measure of stubbornness that Water en route to going double platinum ing by to visit. I did not know they were comes along with that. But you set out and reaching number one on six of the gonna bring a small recording studio in your life to do something, and when major airplay charts. “Live in the Mo- into my room,” he says. But they did. something happens it’s up to you to ment” followed that success by hitting “At this point I haven’t even sat up yet make that sort of a nonissue and find a number one on the Billboard Alternative for longer than 10 or 15 seconds without chart and breaking the record for most getting all light headed and passing out. plays in a week. I’ve still got a neck collar and I’m fully Four months after his injury, This level of success was new for hooked up, I think I had a nurse take Howk played on stage for Portugal. The Man, and for Howk, who out a couple of IVs because they were joined the band in 2015. With a rotat- making noise on the mics. … I had the first time. “Well, no one ing cast of musicians, led by singer John strummed around and messed around ever asked me if we wanted Gourley and bassist Zach Carothers, on some guitars before that point, but Portugal. The Man had built a loyal that was definitely a trial by fire.” to cancel.” following over seven albums and 11 Other than a brief moment when years but had never really reached the he woke up mainstream. in the middle Howk grew up with Gourley and of his spinal Carothers in Wasilla, Alaska, and was surgery, Howk talking with them about joining in 2007, was always when everything changed. “We had just confident that got pretty close again, and he was about playing guitar to join our band, and then suddenly the would remain a accident happened,” says Carothers. central part of his Howk was sitting against a wall in a life, and this just friend’s yard when the wall collapsed. He confirmed it. “After fell 12 feet and ended up with a T4 spinal my injury, I knew

Photo by Maclay Heriot

24 NEW MOBILITY Photo by Maclay Heriot Maclay by Photo way around it.” was stirring. Marcus Charles was part of His next trial by fire came The Budding a group looking for investors with local four months later when he Businessman connections. When he met Howk, he played on stage for the first With a huge network of friends and knew he’d found his man. time. His band, The Lashes, connections in the music industry, Howk “Eric has always had credibility in had a long-booked gig at had no trouble finding bands to tour the music scene, before and after he got Bumbershoot, Seattle’s with after rehabbing. Taking advantage hurt,” he says. “I was really impressed premier music festival. of his self-described “truck driver’s soul,” by him and wanted him to be involved.” In typical fashion, Howk he drove himself all over between gigs to The fact that Howk was only months plays down the fact that feed his musical compulsion. At the same removed from his injury didn’t faze he got back in the swing time, back in Seattle he got involved Charles at all. “He’s the ultimate ex- of things so quickly. behind the scenes, joining an ownership plorer, trying to figure out what he wants “Well, no one ever asked group that bought and refreshed the to do with his life and where he wants me if we wanted to can- Crocodile, a famed Seattle music venue. to go. He’s always up for an adventure cel,” he says. The Crocodile had won over Seattle and trying new things,” he says. “I think Despite the success, music fans thanks to shows by Nirvana, that’s rare to find in human beings.” The Lashes were coming Pearl Jam, R.E.M. and many more, but Howk’s exploration didn’t stop there. to an end. “Everyone it held even more significance for Howk. In 2011, Howk partnered up with an- looked around and took “All of my firsts were there,” he says. “I other group to start The Forge, a bar on inventory and said, played all of my first big shows at the Seattle’s up-and-coming waterfront. Like ‘Nah, I don’t think we Crocodile. My early bands opened for Charles, investor Mike Ager instantly hit wanna do another 60- The Strokes and The Libertines back it off with Howk, knowing he had found day tour in a van that’s in the day … it’s really the first place I an ideal partner. Howk’s connections not running great learned how to manipulate my ID so it were appealing, but it was his personal- with no prospects of looked like I was 21.” ity that sealed the deal. climbing our way out When Howk saw a sign in the win- “He’s infectiously positive about of it,’” he recalls. “But, dow announcing the 2007 closure, he everything. You don’t see him ever

Photo by Noah Witt Noah by Photo I wanted that.” started asking around to see if anything get down or bummed out,” says Ager.

JUNE 2018 25 “Whatever crisis there is, or hassle, he All that experience had given Howk out, like I would not go anywhere with- has this very sort of calming presence. the confidence that he needed to persuade out a commode. That’s what I learned He can be the mediator and take in Carothers and Gourley. On paper, being on and I’m used to.” He has also weaned everyone’s ideas and positions and then a part of a major touring band seemed re- himself off baclofen, tizanidine and articulate them and come up with solu- ally hard, says Carothers. “I would talk to lorazepam, learning that some simple tions that everybody can get along with.” Eric, and he would say, ‘Every day is differ- stretches and coffee are way better for his Longtime friend Nathanial Bradford ent, some days are really easy, some days body and his busy life. was the one who introduced Howk to are really hard. There are a lot of things Still, some realities can’t be escaped, Ager. He seconded all of Ager’s com- that don’t look like you can do them, but and when it comes to inaccessible venues, ments, highlighting Howk’s intelligence you just figure it out.’ With that, we just Howk has learned to grin and bear it. and selflessness. “He just makes every- decided to go for it.” “We’ve had to get me onstage some crazy thing make sense,” says Bradford. “I “I snuck in there,” Howk says with a ways, but we always get me onstage,” he think we are all so close to the business smile. “I peeked in under the radar.” says. From being carried through the that we exist with our heads up our own Once officially in the band, all the crowd and lifted onto the stage, to navigat- asses a lot of the time. And what Eric theoretical discussions about access ing narrow ramps too steep to even walk brings into it is just being like, ‘Hey, I obstacles became real. At the top of the up, Howk has seen it all. He documents know that you guys are doing this and list are inaccessible venues and transpor- each venue using his own rating system you guys are doing that, but here’s a little tation. “It’s im- and a color-coded collection of notes. bit of how the possible to find Carothers has developed a routine Getty Images actual world an ADA acces- to assess what lies ahead. “I get up every works.’ He sible tour bus,” morning, grab us coffees and I go in brings a new says Carothers. and scope out the venue. I’ll send him a perspective “Like, they text like, ‘Everything is fine,’ or ‘Today’s without any don’t exist.” gonna kind of suck, man.’ Every day is ego, working That makes different, but what are you gonna do? We toward the for some inter- haven’t found a stage that we haven’t got better good esting nights on him up on yet, so it works.” for everyone. the road when Howk laughs when retelling the all- … He’s just the band is too-common conversation the band’s so fucking ca- between gigs. stage manager has with local staff when pable in every “I’ve got to the rare venue does have a wheelchair lift way, shape Cliffhanger my onto the stage. and form.” way around,” “He will oftentimes go up to a guy at Buoyed by says Howk, a venue and be like, ‘I noticed you’ve got their success, a lift. Does that thing work?’ And nine citing the movie where Sylvester Stallone five years later the group opened The Sov- times out of 10, the answer is no. But on plays a mountain climber tasked with ereign, another bar, less than a mile away. the occasion that it does work, the guy’s taking down the bad guys. “Because Howk describes The Forge as “somewhere usually like, ‘Oh, yeah. It works just fine. scooting my way on over … let’s just between Cheers and the bar from It’s What’d you have in mind? A bass cab or say it’s a dirty place to be. There’s a lot Always Sunny in Philadelphia,” while The a couple of PA speakers or a drum set?’ of peeing in bottles and stuff. It is not Sovereign has a slightly more refined feel. And he just shakes his head.” glamorous.” For Howk, owning a part of the bars Howk relies on Carothers to get fulfilled another childhood dream. “It’s in and out of a myriad of inaccessible the clubhouse! Who doesn’t want to Grammy Fame vehicles. “He literally carries me around own a bar? If I go back in time and tell Howk’s best accessibility story revolves the country,” says Howk, “throwing me 12-year-old me that this is what you’re around the band’s unexpected win at into Sprinters and 15-passenger vans gonna be doing, he’d be like, ‘yeah!’” this January’s Grammys. After Lady and catching me as I fall out of them.” Gaga nearly tripped over his chair on After nursing a set of constantly the red carpet, Howk and the band were Making the Band sprained ankles thanks to rough trans- eagerly awaiting the announcement of That same enthusiasm was on display fers, Howk has learned to be careful and their category when one of the handlers when Howk rekindled talks about joining to try and grab a second person to help. approached them. Portugal. The Man with Carothers and It’s one of the many ways the band’s “We’re gonna need you guys to take Gourley in 2015. “He had jammed with demanding schedule has pushed him your seats at the event, and then when us whenever we were in the same place, out of his comfort zone and helped him the category before your category comes whenever we’d play Seattle or we were at grow. As an example, he mentioned how up, we’re gonna sneak you up side stage the same festival,” recalls Carothers. “And he has streamlined the equipment he so that you can go up there and do your we always wanted him in the band, but he needs to travel. “There used to be things speech,” he told them. was always in so many other bands.” that I would absolutely not travel with- Howk remembers mentally process-

26 NEW MOBILITY “Someone hands me a wireless microphone. ‘Hey, just in case, if you can’t reach the podium mic and you wanna say some words.’ I’m like, if? If?! If this Grammy goes to anyone else right now, I’m gonna burn this building down!”

is coming up and I’m Reeve. He won a Grammy for Best looking at Paul Shaffer Spoken Word Album in 1998 for his and the CBS Orchestra, memoir, Still Me. freaking out a little bit, If it wasn’t already crazy enough hear- and someone hands me ing the band’s music played on pop radio a wireless microphone. alongside stars like Chance the Rapper ‘Hey, just in case, if you and Demi Lovato, the Grammy win cata- can’t reach the podium pulted the band into even more fame. mic and you wanna say “My family’s a lot bigger now,” jokes some words.’ I’m like, if? Howk. “I have cousins that I hadn’t If?! If this goes to anyone heard from in years and years and years. Band members (clockwise from upper left) Zach Carothers, else right now, I’m gonna I’m like, ‘Oh yeah, I remember you. I Zoe Manville, Jason Sechrist, Kyle O’Quin, Eric Howk and John burn this building down!” haven’t talked to you since I was 6, but Gourley at the Grammys. Howk didn’t need to yeah, we’re cool.’ It’s pretty crazy. The ing what the handler’s words meant. break out the matches. super popular kid from high school that “Are you telling us … wait … what are He rolled on stage with the band and was never friends with me and never you telling us right now?” became the second person with a spinal reached out or anything, just friend “Oh, yeah, no, uh, good luck,” the cord injury to receive a Grammy, ac- requested me on Facebook. I’m letting Newhandler Mobilityt slyly OCTreplied. 2014 6000TRS_mm_346.qxdcording 9/26/2014 to the 9:44 awards AM Page department. 1 The that hang for a bit.” “Then we get up there, our category first? None other than Christopher Still, Howk hasn’t reached the level of

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JUNE 2018 27 recognition where he gets mobbed when he goes out in public, and that is fine with him. “One out of every 200 dudes in an airport will be wearing a Coachella T-shirt and a tie-dyed headband, and he’s gonna know who I am and yell ‘Eric Howk!’ and come running over, but by and large, none of us are really media darlings or personalities.” Howk jokingly describes Portugal. The Man as “36-year-old fat Alaskan pop stars,” but it is clear he is happy with the level of stardom they’ve at- tained. Instead of Mick Jagger, Howk says he wanted to be Ron Wood, “the guitar player with mystique.” Borrowing a quote from Almost Famous, he added,

“like one of the out-of-focus guys.” Heriot Maclay by Photo “That’s exactly where I want to be,” he says. “I’ve tried fronting my own bands. that, he’s the exact same person. You send tweet. He remembers what it was like I hate it. I hate the ‘all eyes on me’ kind of him a text, you get a response. He never adjusting after his injury and has said he thing. I love sneaking in there, having my talks down to you. He never pretends cropped his wheelchair out of his photos moment and taking it for a second, and like anything is more important than the for the first few years. Now, in a matter handing it right back. I’ve always just kind friendships he had going into it.” of a few months, Howk had become one of wanted to be on a team.” of the world’s most visible musicians in a Even now, when he is on one of the Untrodden Territory wheelchair. most visible and successful teams in “I mean, all this stuff is untrodden and While Howk hasn’t let success go to new territory to me,” he says. “The easiest the industry, Howk hasn’t let it change his head, it has opened new doors and him. “That’s what’s hilarious and that’s and most obvious thing I think I can do brought new responsibilities, which he is not miss shows and have a public and why he’s the perfect guy to have some- admits he is still trying to figure out. thing like this happen, because it doesn’t a visible job. I think the second that you A tweet from one of his followers after start really trying to sell yourself as a mo- change him at all,” says Ager. “He’s the band’s performance on national TV the exact same guy he’s always been. It tivating or inspiring figure, it loses some in last year’s American Music Awards of its earnestness and genuine intent. I’m doesn’t matter if he’s in a situation that’s drove the matter home. @MusicQueen87 tough or easy, he’s the same, consistent, still trying to figure that out. I’m still try- wrote, “I cried when I saw you on the ing to draw that line all the time.” good guy all the time.” AMAs because I’d never seen a main- “He cut his hair, and he wears a Howk has embraced early opportuni- stream musician in a wheelchair on TV ties to use his visibility for good — stop- jacket that I’ve never really seen him wear before. It was a magical feeling.” before,” adds Bradford. “But other than ping in to visit newly injured people at Howk choked up on hearing the Craig Hospital, helping with a fundraiser for March of Dimes and recording a se- ries of PSAs for National Telecommuting Institute, a nonprofit that helps people with disabilities find jobs. NTI has been around for 26 years, but director of marketing Mike Sanders says the ads Howk recorded have helped the organization connect on a larger scale than normal. “We’re on over 400 radio stations right now and people have been calling us up, saying if it wasn’t for Eric Howk, if it wasn’t for Portugal. The Man, I would never have heard of NTI.” Howk was one of the people who had never heard of NTI before connecting with Sanders, but the organization’s goals especially resonated with him. “A lot of their messages are things that I person-

Photo by Maclay Heriot Maclay by Photo ally hadn’t really thought of myself, and

28 NEW MOBILITY And he’s used it for very good things.” “I cropped my wheelchair How Howk decides to use that out of pictures for the first voice going forward remains to be seen, but there’s no question his few years. Visibility helps eyes are open and he’s an articulate all of us grow as a society, spokesperson for many of the issues affecting wheelchair users. “If there and we all shine on.” was ever a time to get riled up and to — @EricHowk on Twitter point out some hypocrisies and not just let things take their course with- they hit home,” says Howk. “If you want out shining a light on them, I think it’s to work, there’s a way. I was doing con- now,” he says. “Look at the number of struction, and I pretty much, like, threw things this administration has deemed that away the second I realized that I disposable, the number of social pro- was gonna be a paraplegic. Now I realize grams that are on the chopping block, “Reunited.” — eric_howk on Instagram that’s ridiculous and I’m sure I would be and the number of things that are going totally valued and useful on a work team. away. I think that’s the biggest problem “I love my job,” he says. “It is never “NTI’s whole message is what would with what’s happening, things sort of really hard for me to get out of bed and you like to do? And here are some of the gently going by the wayside. And sud- do this thing. Even if the music ended things that you could jump into right denly we look around and there are no and touring was over, getting back into now. I think that’s killer.” safety nets left for anyone or anything. Portugal and into touring and all that Carothers is proud of the way his It’s terrifying.” was vindicating. It scratched an itch that friend and bandmate has embraced the For right now though, Howk’s eyes I was always gonna have and I proved spotlight. “I don’t think he realized that are focused squarely on the music, and something to myself. he could do as much, or have the plat- the continued success of Portugal. The “I would be heartbroken if it all ended form to help as many people,” he says. “I Man. The band is wrapping up some and it all went away, but I would be think he’s super excited about it. When U.S. dates this month before heading to proud of what I was able to accomplish you do have a voice, you should use it. Europe for a month of shows. and I’d be all right.” Enjoy driving with both hands on the wheel

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JUNE 2018 29 Rollingwith Dad

BY TEAL SHERER

hen my dad called to tell me he’d fallen off a ladder putting up the outdoor television and had broken his leg and needed surgery, I cried my eyes out. Prob- ably an overly dramatic reaction, but ever since my mom died four years ago, I’ve been holding onto him more tightly. It has been one thing after another, with my Wdad having bladder cancer, then prostate cancer, my stepmom’s heart surgeries and my stepfather’s liver cancer, not to mention my in-laws’ health scares. It was too much. I knew I needed to be with my dad, and my husband supportively agreed to hold down our fort.

I flew diagonally across the country from my with the whole “not being able to walk” thing. home in Seattle to Osprey Cove, a retirement When I was 14, I was in a car accident and community in St. Mary’s, Georgia. My dad and crushed my L2 vertebra and have been para- stepmom kept me in mind when building their lyzed from the hips down since. My dad helped custom one-story home, so it was perfect for me position my sliding board while I learned to my dad, who was now also on wheels. When transfer, and he installed my shower bench. He I arrived, my dad was two weeks post-op and also helped me put my jeans on before school. maneuvering his $115/month rental wheelchair I’d lie in bed while he’d hold my legs high and pretty well. He had just opened a bottle of pi- I’d shimmy them up over my hips. Now it was my dad’s turn to use a sliding board and shower bench. And My dad was very familiar with the whole ‘not being able to it was his turn to transfer onto the La-Z-Boy couch, aka his walk’ thing. He helped me position my sliding board while I “perch,” and recline to more easily get his shorts up. learned to transfer, and he installed my shower bench. Now After I became paralyzed, it was his turn to use a sliding board and shower bench. my neurosurgeon told me to stay in the best shape possible. He said there would be a cure not noir. I watched him angle and re-angle his for spinal cord injuries in the next 10 years and wheelchair and then Go Go Gadget his arm to I needed to be ready. So I worked out my up- successfully grab wine glasses off the hanging per body with an arm bike and weights. I had rack. Wheelchair to wheelchair, eyes to eyes, we leg braces made so I could stand, and my par- clinked our glasses. ents rented a motorized bike called a Quadri- Considering my dad couldn’t put weight on ciser to move my legs. I swam, I stretched and his leg for another four weeks and was miss- I ate a healthy diet. It’s been 23 years, and even ing the best time of year in St. Mary’s to play though I’m not “cured,” I continue to take care golf, he had a positive outlook. But I guess that of myself. I even got certified as a health coach. didn’t surprise me. My dad was very familiar When my dad mentioned he’d like me to help

30 NEW MOBILITY him stay in shape during his recovery, it filled me with joy. I had the opportunity to apply all I had learned over the years to help him. Rolling Dad Working Out and Kicking Back Since my dad’s first physical therapy appointment wasn’t for anoth- er week, we decided to focus on strengthening his upper body to make transfers easier, as well as work on his upcoming transition to a walker. Maybe it would even improve his golf swing! With the Bee Gees’ “How Deep is Your Love” playing in the background, we got to work. As I guided my dad through some resistance band exercises, I instructed him to engage his core and keep his shoulders down and back. To keep him motivated, I played a video of Aaron Fothering- ham doing a back flip in his wheelchair, and said, “If you work hard enough, Dad, this could be you.” After our workout, we’d reward ourselves by transferring onto the perch. Buttons pushed, we’d recline back, while our legs were raised. We’d read, watch movies like Hidden Figures or The Intern, and in- evitably, we’d fall asleep. The La-Z-Boy is dangerously comfortable and should come with a warning sign, “IF YOU ENTER YOU WILL MOST DEFINITELY NOT STAY AWAKE.” As a mom of a 2-year old, I was set- tling into this routine nicely. Well rested, we were more than ready for happy hour and gin rummy. My dad is a very competitive card player. When he is at his other home in Knoxville, he plays every day with a group of guys at a place they call “The Treehouse.” It’s a windowless room in a strip mall, full of couches, a big screen TV, a bar, poker table and cigar smoke. (My husband once gained entry, which is how I know these specifics.) I hadn’t played gin in forever, so I encouraged my dad and stepmom to go first in order to observe and plan my attack. My dad’s strategy is to figure out what his opponent has, so he doesn’t give them a card they need. Anytime you pick up a card, he obnoxiously repeats it over and over to lock it into his brain, “Eight of hearts, eight of hearts, eight of

JUNE 2018 31 ,

hearts.” Thankfully I was able to tune him out, and after a couple days I was beating him at least half of the time. Though frustrated, deep down I knew my dad was proud of me. A highlight of our day was when my dad and step- mom’s friends would drive over in their golf carts — my favorite was a neon green-and-white striped one named “Margarita.” They’d stop by for a chit chat, to drop off a good book they’d just finished reading, or to share a yummy home-cooked dinner. One of the couples was prepping for their annual 50-person shrimp boil and recounted their drama-filled day trying to find enough shrimp. Even though my dad and stepmom had only lived there a few years, it was like they had known these friends forever. They’d hilariously tell stories, crack jokes and give each other a hard time. It was pure entertainment, like a trashy reality show: The Real Retirees of Osprey Cove. Dad Turns 70 After seven days, we had settled into a nice routine, and it was hard to say goodbye. Being injured forces you to slow down, to just be. And it felt good to just be with my dad. To sit with him, keep him company and bring him handfuls of mixed nuts to snack on, as he refused to keep the huge Costco container by him in fear of eating too many and jeopar- dizing his waist line. I was going to miss my dad, our workouts and our nightly viewings of Family Feud. Three months later, my sister and I waited curbside at the airport. It was our dad’s 70th birthday, and we’d flown in to celebrate. He pulled up in his Buick Enclave and walked over, with just a slight limp, to hug us. He looked well. We threw him a party with his closest friends, and my sister and I gave him a framed collage of photos from when we were young. Back then, 70 seemed so old. The next day was beautiful, 68 degrees and sunny. As my dad and I headed through the garage to go on a walk, he stopped in front of his wheelchair, which was parked against the wall next to his golf clubs. He sat in it, bent over to grab his tennis shoes, and put them on. I laughed. His wheelchair had a new purpose. My dad walked, and I rolled, through the neighborhood. We’d stop to chat with neighbors and to check out the new houses being built. When we finished the mile-long loop, my dad sat back down in his wheelchair and rolled into the drive- way. He stopped, looked up at the sky and closed his eyes. As I watched him sunbathe, I thought about how lucky I was to be his daughter. I pulled my chair up beside his, grabbed his hand, and held it tight.

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NewMobility.indd 1 4/25/18 6:54 AM REHABS Hospital and Organizational Members

ALASKA Santa Clara Valley Medical Center, Hospital - SCI Program, Washington, MASSACHUSETTS San Jose, CA; 408/885-5000 DC; 202/877-1000 Providence Alaska Medical Center Spaulding Rehabilitation Hospital, Anchorage, AK 99508; Sharp Rehabilitation Center, San Charlestown, MA; 617/573-2770 FLORIDA 907/562-2211 Diego, CA; 858/939-6709 Brooks Rehabilitation Hospital, Sutter Rehabilitation Institute, MARYLAND Jacksonville, FL; 904/345-7600 ARIZONA Roseville, CA; 916/878-2588 Adventist Rehabilitation Hospital of Pinecrest Rehabilitation Hospital at HealthSouth East Valley Rehabilita- Maryland, Rockville, MD; COLORADO Delray Medical Center, Delray Beach, 240/864-6132 tion Hospital, Mesa, AZ; FL; 561/498-4440 480/567-0350 Craig Hospital, Englewood, CO; International Center for Spinal Cord 303/789-8800 Barrow Neurological Institute at GEORGIA Injury at Kennedy Krieger Institute, Baltimore, MD; 888/554-2080 Saint Joseph’s Hospital and Medical CONNECTICUT Emory University Hospital Center for Center, Phoenix, AZ; 602/406-3747 Rehabilitation Medicine, Atlanta, GA; University of Maryland Rehabilitation Gaylord Specialty Healthcare, 404/712-7593 and Orthopaedic Institute, Baltimore, CALIFORNIA Wallingford, CT; 203/284-2800 MD; 410/448-2500 Rehabilitation Hospital Navicent Hospital for Special Care, New Brit- Dignity Health - Northridge Hospital Health, Macon, GA; 478/201-6500 Medical Center, Center for Rehabili- ain, CT, 860/827-2761 MICHIGAN Shepherd Center - Southeastern tation, Northridge, CA; Mount Sinai Rehabilitation Hospital Mary Freebed Rehabilitation Hospi- Regional SCI Model System, Atlanta, 818/885-8500 - a Saint Francis Care Provider, tal, Grand Rapids, MI; 800/528-8989 GA; 404/350-7645 Rady Children’s Hospital San Diego Hartford, CT; 860/714-3500 DMC Rehabilitation Institute of - Division of Pediatric Rehabilitation ILLINOIS Michigan, Detroit, MI; 313/745-1055 Medicine, San Diego, CA; DISTRICT OF COLUMBIA Marianjoy Rehabilitation Hospital, 858/576-1700 Medstar National Rehabilitation Wheaton, IL; 800/462-2366 MISSOURI Memorial Medical Center, Spring- Ability KC, Kansas City, MO, field, IL; 217/788-3302 816/751-7812

Schwab Rehabilitation Hospital, MISSISSIPPI EVENT: DAY AT THE LAKE Chicago, IL; 773/522-2010 Methodist Rehabilitation Center, Shirley Ryan Ability Lab, Jackson, MS; 601/981-2611 Place: Smithville, Missouri Chicago, IL, 312/230-1000 Date: July 13, 2018 NORTH CAROLINA INDIANA Cone Health Inpatient Rehabilitation Time: 9 a.m to 4 p.m. Parkview Rehabilitation Hospital, Center, Greensboro, NC; Fort Wayne, IN; 260/373-4000 Cost: Free for participant and one guest; additional 336/832-8153 Rehabilitation Hospital of Indiana, guests $5 Vidant Medical Center, Greenville, Indianapolis, IN; 317/329-2000 NC; 252/975-4100 Ability KC’s Day at the Lake introduces people with IOWA Wake Forest University Baptist disabilities to adaptive water skiing, kayaking, canoe- Inpatient Rehabilitation Program, Childserve, Johnston, IA 50131; Winston-Salem, NC; ing, pontoon rides and handcycling. All participants 515/727-8750 336/716-2011 and guests must be at least 16 years old, and registra- WakeMed Rehab Hospital, Raleigh, KANSAS tion in advance is required by June 25. Visit: www. NC; 919/350-8861 Mid America Rehabilitation Hospital, abilitykc.org/events/day-at-the-lake/ Overland Park, KS; 913/491-2400 NEBRASKA Madonna Rehabilitation Hospital SCI KENTUCKY Rehabilitation Program, Lincoln, NE; Cardinal Hill Rehabilitation Hospital, 402/489-7102 Lexington, KY; 859/254-5701 QLI - Spinal Cord Injury Program, Frazier Rehabilitation Institute, Louis- Omaha, NE; 402/573-3700 ville, KY; 502/582-7490 Gateway Rehabilitation Hospital NEW HAMPSHIRE Florence, KY, 859/426-2400 Northeast Rehabilitation Hospital Network - Neuro Centers, Salem, LOUISIANA NH; 603/893-9478 The Gilda Trautman Newman Reha- bilitation Center, New Orleans, LA; NEW JERSEY 504/899-9511 Bacharach Institute for Rehabilita- , Pomona, NJ; 609/748-5480 Touro Rehabilitation Center, New tion Orleans, LA; 504/897-8560 Kessler Institute for Rehabilitation, West Orange, NJ; 973/252-6367

34 NEW MOBILITY HealthSouth Reading Rehabilitation WASHINGTON Hospital, Reading, PA; University of Washington Harbor- 610/796-6000 view Medical Center: Northwest RESOURCE: SCI FERTILITY PROGRAM Moss Rehabilitation Hospital, Regional Spinal Cord Injury System, Elkins Park, PA; 215/663-6000 Seattle, WA; 206/221-7390 Hospital and Organizational Members With the goal of making parenthood a possibility for people Reading Hospital Rehabilitation with spinal cord injury, Sharp Rehabilitaion Center in San at Wyomissing, Wyomissing, PA; WISCONSIN 484/628-8000 Diego, California, offers a comprehensive, single-location The Spinal Cord Injury Center at Spinal Cord Program at The Froedtert and The Medical College SCI fertility program. Services include: certified rehabilita- Children’s Institute, Pittsburgh, PA; of Wisconsin, Milwaukee, WI; tion nursing evaluation and referral; fertility evaluation; 412/420-2400 414/805-3000 initial assessment and counseling; ongoing individual and UPMC Rehabilitation Institute at Mercy, Pittsburgh, PA; couples counseling; outpatient sperm procurement and 800/533-8762 high-frequency vibratory stimulation; physical therapy and SOUTH CAROLINA occupational therapy assessment for child care needs, home Organizational Members Greenville Health System - Roger C. Florida Spinal Cord Injury Resource modification and adaptive equipment; pregnancy, delivery Peace Rehabilitation Center, Greenville, SC; 864/455-3779 Center, Tampa, FL; 813/844-4711 and postpartum care; and parenting classes with adaptive

HealthSouth Rehabilitation Hospital Miami Physical Therapy Assoc., Inc. techniques. Visit: www.sharp.com/services/rehab/spinal- of Charleston, Charleston, SC; Miami, FL; 305/444-0074 cord-injury-fertility.cfm 843/820-7777

NextStep - Kansas City Roper Rehabilitation Hospital, Charleston, SC 843/724-2800 Overland Park, KS; 913/451-1500

NextStep - Orlando TENNESSEE Sanford, FL; 407/571-9974 Patricia Neal Rehabilitation Center, Knoxville, TN; 865/541-3600 Project Walk - Boston

Regional One Health Rehabilitation Stratham, NH, 603/583-5119 Hospital, Memphis, TN; 901/545- 7100 Project Walk - Houston Missouri City, TX; 281/410-8348 Vanderbilt Stallworth Rehabilitation Hospital, Nashville, TN; Project Walk - Mt. Laurel

615/963-4051 Mt. Laurel, NJ; 484/800-1563

TEXAS Project Walk - San Diego HealthSouth RIOSA, Carlsbad, CA; 760/431-9789 San Antonio, TX; 210/691-0737 Project Walk - Walnut Creek Houston Methodist Hospital, Freemont, CA; 510/623-1924 Houston, TX; 713/ 394-6000 Texas Rehabilitation Hospital of Fort Push to Walk Worth, Fort Worth, TX; Oakland, NJ, 201/644-7567 817/820-3400 NEW YORK OHIO TIRR Memorial Hermann Hospital, The Perfect Step Claremont, CA; 888/436-2788 Helen Hayes Hospital, West Metrohealth Rehabilitation Institute Houston, TX; 713/799-5000 Haverstraw, NY; 845/786-4000 of Ohio, Cleveland, OH; University of Texas Southwestern Mount Sinai Medical Center, 216/778-3483 Medical Center - Rehabilitation Unit, New York, NY; 212/241-6500 Summa Rehabilitation Hospital, Dallas, TX, 214/493-0597 Orange Regional Medical Center, Akron, OH; 330/572-7300 Middletown, NY 10940; UTAH 845/333-1000 OKLAHOMA Integris Jim Thorpe Rehabilita- University of Utah Health Care Rusk Rehabilitation at NYU Langone tion Network, Oklahoma City, OK; Rehabilitation Center, Salt Lake City, Medical Center, New York, NY; 405/951-2277 UT; 801/585-2800 212/263-6012 St. Charles Hospital Rehabilitation OREGON Interested in becoming Center, Port Jefferson, NY; VIRGINIA Legacy Rehabilitation Institute of -Or a hospital or organiza- 631/474-6011 egon, Portland, OR; 503/413-7151 Inova Rehabilitation Center at Inova Strong Memorial Hospital of the Mount Vernon Hospital, Alexandria, tional member? VA; 703/664-7924 University of Rochester, Rochester, PENNSYLVANIA Please contact Nick NY; 585/275-2100 UVA - HealthSouth Rehabilitation Allied Services Integrated Health LiBassi at 718/803-3782, Sunnyview Rehabilitation Hospital, Hospital, Charlottesville, VA; System Spinal Cord Injury Program, 434/924-0211 Schenectady, NY; 518/382-4560 Scranton, PA; 570/348-1360 ext. 7410 or VCU Spinal Cord Injury The Burke Rehabilitation Hospital Healthsouth Rehabilitation Hospital [email protected] - Spinal Cord Injury Program, White Rehabilitation, Richmond, VA; of Altoona, Altoona, PA; 804/828-0861 Plains, NY; 914/597-2500 814/944-3535

JUNE 2018 35 A Tribe of UNRULY WOMEN BY ELLEN STOHL

comply. My friends help me transfer to a Erin is our queen. She created the seat and park my wheelchair in the emp- group and gave it its name, a play on ty spot next to me. The first scene opens the infamous Illuminati, a secret society and out come the candy and the flasks, whose aim was to create “a state of lib- discreetly smuggled in under my chair. erty and moral equality.” Erin says the We pass them along throughout the film women of the Clitorati have a similar while we laugh ourselves silly. goal. “A state of temporary liberty to go It’s just a typical night out for the a little wild and enjoy unconditional sup- Clitorati. port to be seen as equals in all aspects of our lives.” For me, discovering a group of ladies who understood the trials and t’s dark except for the previews on “DISCOVERING A GROUP OF LADIES tribulations of being a mom, wife, and a the movie screen and we are all WHO UNDERSTOOD THE TRIALS woman meant I wasn’t alone. It was liber- dressed up like bridesmaids, with AND TRIBULATIONS OF BEING A ating finding my people. And the ladies oversized, light-up engagement MOM, WIFE AND A WOMAN MEANT of the Clitorati are definitely my crowd. rings that blink on each faux brides- I I WASN’T ALONE.” maid’s finger. We hustle to get situated MEETING THE TRIBE before the movie, Bridesmaids, starts. Security has already asked us to lower I have my daughter, Zoe, to thank for our voices, and they approach us again to “We were like celebrities, dressed to the my membership. As a new mom, I was turn off the rings. We giggle loudly and nines and a little bit full of ourselves,” re- completely overwhelmed with trying to pose for a quick picture before we dim calls my friend Erin. “We strode along like do everything right, and had little time the rings and take our seats. Just as the we owned the place … smoking where we or energy to meet people. So when my shutter clicks, the usher confiscates the weren’t supposed to, taking photos where then-3-year-old wanted a playdate with camera stating, “No pictures or video al- we weren’t supposed to, and, finally, you another kid who attended her preschool, lowed.” We all protest: “The camera was riding the escalator in a wheelchair like I popped a wheelie at the chance. My life pointed at us, not the screen!” The usher you’re not supposed to! —‘What am I going had evolved from jet-set pseudo-celeb to gives it back with a strict warning, and we to do? Break my neck? Oops, I already did.’” teacher, wife and mom. It felt like every-

36 NEW MOBILITY thing revolved around the kid, and I was from me, and I still didn’t notice the are not alone in our journey. losing sight of myself. I couldn’t even get wheelchair. What I did notice was that Andrea, my hero and mentor, has in- a shower alone without her fussing at the you were outspoken, brash and loud. spired me with all she has done. She is a door. I desperately needed to find some- But you also smiled — or should I say freelance writer, a speaker, and a mom one who understood the transformation grinned — and your eyes sparkled when extraordinaire. She started and com- I was experiencing and could help me you threw a martini-soaked napkin in pleted her book on raising a child with strike a balance. Accessibility was always my face to make a point. I knew I had met a disability, Happily Ticked Off, while I my concern, but I did not want to address my match.” still write mine in my head. Funny thing, it before I got to know someone. It was a Erin knows that women desire to be though, like all the ladies in our clutch, given that I would host the playdate. accepted for who we are, to share an in- I’ll say Andrea is my champion, but An- That is how I met Kristen, my first timate connection and quiet conversa- drea will swear I am hers. “mom” friend and the one who would in- “Ten years ago,” she tells me, “my son troduce me to this tribe of unruly wom- had just been diagnosed with a disorder en. Comfortable in my own skin, I still “THESE ARE THE FRIENDS I CRY I was terrified of. What would happen to him socially, academically and physi- found myself worried. Would I be cool WITH. THE ONES MORE ACUTELY enough, have the right snacks, be able to cally? What would happen to me? Your AWARE OF WHAT I EXPERIENCE AS relate? During the mom part of our pre- transparency on what it’s like to live with A WOMAN WITH A SPINAL school’s “Mommy and Me” period, Kris- the unexpected gave me the shot of en- ten always talked about organic foods, CORD INJURY.” couragement and hope UNRULY the problems with plastic, and alternative discipline. She was over a decade my ju- nior, a vegetarian, and her husband had dreadlocks. They were both young, hip, tions. To fulfill those needs, she coor- WOMEN and the epitome of cool. dinates our monthly outings for moms Kristen sensed my apprehension. that include delicious dinners, fabulous I kept a tub of Red Vines candy on the game nights, and themed movie adven- tures. The large events are a wonderful kitchen counter, and silly as it was, I place to celebrate and blow off steam, but somehow thought she might object to it. I we needed a more intimate meet-up to couldn’t have been more wrong. deal with the realities of life that plagued “I love Red Vines,” said Kristen. “Once us all. That led to Wine & Whine, a small I ate a few,” she confided later, “I think we offshoot of the Clitorati. both realized we are not that different.” The core faction of W&W includes During that first encounter, Kristen Kristen, Erin, Nel, Grace, Martina, and I talked about our birth and breast- Molly, Andrea, and myself. We have met feeding experiences, raising kids, and almost weekly for over 10 years to share how it sometimes felt like we were single our joys, sorrows, dreams, and desires. parents even though we had husbands. It We are all married, or have been. We was standard “mom” stuff, but the con- are all moms, and our ages span three versations were honest and vulnerable, decades. We are friends because we can and the laughter was real. say to the other, “What, you, too?” We “I remember feeling so relieved to find comfort and support knowing we meet a mom like you,” says Kristen. “A mom I felt like I didn’t have to pretend around.” And I felt exactly the same way. Kristen was sure I’d fit in with a larger group of moms she hung out with and in- vited me to tag along to what they called Mom’s Night Out. That’s when I first met Erin, the organizer of the dinner. “I don’t remember hearing too much about you,” says Erin. I really don’t even remember knowing you used a wheel- chair. Mostly, the vibe was like, don’t mess with Ellen. You sat across the table I needed to survive a terrifying time for Many people quit seeing the chair val cruise and dressed to the nines as me. You surrounded me with friendship once they get to know me, but my closest Mrs. Claus and her Naughty Reindeer and took me on adventures with four friends never forget I need the wheelchair for the Halloween costume contest. We other women who changed the trajectory for mobility. Their understanding of my got tagged as finalists, but we weren’t of my life in more ways than I can count!” accessibility needs make them more ame- even given opportunity to display our The support all of us have received nable to hold our sessions at my house. amazing costumes with all the other from one another has helped each of us They have learned how much easier it is contestants who were being showcased not only survive, but thrive. We con- for me in an accessible environment, and on the ballroom stairs!” stantly deal with the issues that arise with they are keenly aware when others are Traveling together also brings a whole marriage, divorce, dating, raising kids, not as thoughtful. new level of intimacy to friendship — es- dealing with teachers, illness and life in “People can forget to be considerate,” pecially when one’s body has a mind of general. Someone once wrote, “You can Grace acknowledged to all of us in one of its own. On our first cruise together, my laugh like a fool in front of good friends, our sessions, “and I find myself getting friends went to extreme measures to keep but you can only cry like a baby in front defensive about the venues we meet at. me warm. “Four of us huddled together of your best friends.” These are the ladies Friends who plan birthday parties at bars in an interior room. It was like a high I cry with, the ones more acutely aware of where there aren’t tables for Ellen to sit school sleepover,” says Grace. “The room what I experience as a woman with a spi- with us at, or choosing seats at a comedy was chilly, and you had trouble warming nal cord injury. My friendships with these venue where Ellen has to make an incred- up. I remember you were cuddling with women are not about my wheelchair, but ibly long trek to the front of the theater a hairdryer because it was cold, and me, my wheelchair is a part of them. just to get to the back of the theater where falling asleep wondering if I would die everyone is sitting… five feet from the that night by fire or electrocution. It’d be WHEELCHAIR stairs they were able to climb.” worth it either way.” But knowing my needs and the ob- On the flip side, Kristen got a first- EDUCATION hand introduction into the realities of dysreflexia when the two of us vacationed I was the first woman in a wheelchair “KNOWING MY NEEDS AND THE together. I had never left Zoe before, but most of my now-friends had ever truly the opportunity to scuba dive in Cozu- gotten to know, and looking back, al- OBSTACLES THAT I HAVE TO FACE mel presented itself, and I was beginning most all admitted to some degree of REGULARLY HAS A DEEPER IMPACT to realize how important it was to have apprehension about how to address the ON OUR FRIENDSHIPS THAN friendship activities that did not revolve chair. Molly remembers coming over for SIMPLE ACCOMMODATIONS.” around being a mom. So, we packed our a Halloween party with her daughter. bags and didn’t look back. Along with “You were in a wheelchair and I’d never scuba diving, there were drinks on the hung out with anyone ‘like that’ before,” plane, shots by the pool, she says. “When we got to the house, stacles that I have to regularly face has a there was a ramp next to the front door, deeper impact on our friendships than and I wondered about so many things. I simple accommodations. They accept was most concerned about how much I the fact we must argue for the appropri- should I help you.” ate accommodations, or double-check When Grace first came to my house, if something is really accessible. They she arrived armed with a bottle of wine, even accept the decision to leave if envi- a bag full of goodies in one hand, and a ronmental factors wreak havoc with my cute kindergartener in the other. ability to function. They accept me, warts “I remember wondering,” says Grace, and all. “do I acknowledge the chair? Look at it? Martina, our longtime comrade but Pretend it’s not there? As if the chair were latest travel companion, became acutely a lazy eye. I wanted to do the ‘right’ thing, aware of some of the physical challenges but what exactly was that?” of life in a chair when she broke her ankle In both cases, we quickly found mutu- and had to rent a chair with wheels. “It al understanding. “As soon as I met you, was not even a standard wheelchair, but I none of that mattered,” says Grace. “Your scratched nearly every doorway and trim presence was huge — bigger than your just trying to enter and exit,” she says. disability — and, of course, we hit it off “Forget about being able to rotate it in the immediately.” Adds Molly, “Of course, bathroom! I don’t know how anyone in a there was no need to be scared. You wheelchair manages when so many plac- greeted us the way you’ve been greeting es lack appropriate accommodations.” us ever since ... with a big hug, a ‘Hello, On our last cruise, Martina was re- doll,’ and warmth enough to melt all my ally miffed when a lack of access made worries away.” things awkward. “We were on a Carni-

38 NEW MOBILITY shopping, shows, and a horseback ride help you transfer on and off toilets and And true friendships are a two-way through the jungle that nearly killed me. find your urethra in the dark certainly street. Just as my friends have always “The tour guides were truly ignorant makes it easier to venture out of my been ready to help me, I have sat with of the fact that we needed the ride to be comfort zone. them through cancer, hysterectomies, short and sweet,” remembers Kristen. an autoimmune diagnosis, and divorce. We only paid for the shorter version, but ‘RIGHT AS RAIN’ We have held hands and hearts, sharing they insisted on giving us the extended the sorrows and joys that come from one instead. I learned a lot about spinal Every one of my friends has been privy living. We have picked each other up cord injury on that trip, and how quickly to the ignorance and lack of access emotionally, mentally, and, quite often, you could overheat and stroke out. I someone with a mobility impairment physically. knew it in theory, but that was the only experiences. Whether they wanted to As the years go by, our lives change. time it got real.” or not, they have all become experts in Kids grow and priorities shift, but our Speaking of getting real, my friends ADA accommodations and issues like friendship remains, and we grow and have shown a willingness to help with bed height and roll-in showers. They’ve mature together. Our last wine-tasting almost anything — however personal all shared in the frustrations of acces- adventure provides a perfect example. it may be. A bathroom stall at a bar sible parking and social ignorance, and “We found ourselves back in our hotel in Ensenada we visited on our annual they’ve also reaped some of the benefits: room at 6 p.m., each of us elbow deep in cruise provided a perfect example. “You early entrance to events, better seats at a can of Pringles, watching some mind- could get next to the toilet but couldn’t a lower price because the cheap seats numbing TV show,” says Grace. “We shut the door,” recalls Nel. “It was too aren’t accessible, and people just giving were more the Golden Girls, and less Sex dark to see, so I was either holding the us stuff because I’m in a chair. Together, and the City, but we were together.” flashlight so you could cath or helping we laugh it off as payment for the crap Looking back on the first dance party you cath.” we put up with. that I attended, it’s hard not to escape the For some types of friends, cathing My friends have been with me through feeling that our group was meant to be. might be too much to ask, but not for staph infections, a broken leg, keeping me Reminiscing, Erin told me not long my girls. “It’s crazy, but I don’t mind, I cool on hot days at the Renaissance Faire ago, “As you danced with us in your love just being able to travel together,” by dousing me with water, and picking wheelchair, leaving it all on the dance says Nel. And having a friend willing to me up from restroom floors. floor as we all do, it felt right as rain.”

JUNE 2018 39 PARA/MEDIC By Bob Vogel “When heterotopic ossification occurs in the acute stage of SCI, it most HETEROTOPIC OSSIFICATION frequently happens Q. I’m 34 and in my 10th year as a T6 way of predicting who will develop within two months complete paraplegic. About a year it, says Dr. Douglas Garland, a retired of injury. It can ago, I developed a pressure sore on my orthopedic surgeon and former director sacrum, and a couple months into the of neurotrauma at Rancho Los Amigos also occur years or healing process I noticed my right hip was Rehab Center, who has written peer-re- decades later.” red and swollen. My doc put me through a viewed papers on the subject. When bunch of tests, including a bone scan that HO occurs in the acute stage of SCI, it confirmed I had heterotopic ossification — most frequently happens within two bone growth in the tissues around my hip. months of injury. It can also occur years It has grown so much that it is affecting or decades later and manifests in 10 to — and autonomic dysreflexia. “If you are the range of motion in my hip. 20 percent of people with SCI. It occurs years out from your SCI and suddenly I was prescribed a medication called below the level of injury, most frequent- your hip or knee seems warm or swol- Didronel to stop the growth. My physician ly in the hip (70 percent) and at the knee len, or stiff, or you have other symp- said we can discuss surgery to remove the (20 percent), but also can occur in the toms, you need to address it with your bone growth to try and regain some range elbow or shoulder. Those with complete physician right away,” says Garland. of motion, but not until another bone scan injuries are more likely to develop HO Diagnosis of HO starts with ruling shows it has stopped growing. He also than those with incomplete injuries, and out blood clots, a septic joint or osteo- said it is a messy surgery. HO almost never occurs in people who myelitis, as well as cellulitis and other What causes heterotopic ossifica- do not have spasticity. forms of infection, says Garland. At the tion? What are the signs and symptoms? When HO develops in chronic rather hip, the most common cause of HO is In addition to medication for stopping than acute SCI, there is an underlying an infection. At the knee, it is usually growth, is there any way to shrink it? How cause such as a fracture, a bad pressure caused by fracture — often micro-frac- hard is it to remove? ulcer or surgery for a pressure ulcer, ture — that went undiagnosed because — Scott says Kathleen Dunn, a recently retired clinical nurse specialist and rehab case lower leg bones become so thin from eterotopic ossification is a condi- manager. “Those who had it in the past osteoporosis, it can be difficult to see tion where bone grows in mus- may find it reactivated by such events on an X-ray. When everything is ruled cle, tendons or other soft tissues years later.” Garland adds that even out, diagnosing HO is done with a bone H scan — a specialized type of X-ray that around joints in the body. The new bone repeated urinary tract infections can grows three times faster than normal and cause HO because UTIs send bacteria involves injecting a radioactive tracer can cause jagged, painful joints. In some throughout the body and can seed the into your body that will “light up” any cases, there is so much growth that it hip with bacteria, causing an infection HO, micro-fracture, or osteomyelitis. restricts joint movement. HO can also and HO. “The first thing I think about HO doesn’t show up on an X-ray until it develop into areas that protrude and are with new onset HO in chronic SCI is has progressed. prone to cause skin breakdown. In non- some type of infection,” he says. If HO is diagnosed, the progression disabled people HO is caused by some The most common symptom for can be slowed or stopped by taking type of trauma, such as dislocation of the HO is loss of range of motion, explains non-steroidal anti-inflammatory drugs hip or tears in a joint — the body “thinks” Dunn. Other signs include one or more like Motrin or Celebrex, or a class of the trauma is a fracture and tries to heal it of the following: swelling, redness, skin bisphosphonates — etidronate disodi- by making bone. that is warm to the touch around the um, or Didronel — all options to discuss HO in people with spinal cord injury affected joint, a fever that may increase with your doctor. “If you are prescribed is called neurogenic HO, and the cause at night, increased spasticity, pain — if these medications, it is important to in acute SCI is not known. There is no you have sensation in the affected area keep taking them until your physician

40 NEW MOBILITY says it is OK to stop, or HO can return “Even with a skilled surgeon, it can cause mary way to identify Type II HO is lack with a vengeance,” says Dunn. lots of blood loss and has the potential of response to treatment. Repeat bone Both Garland and Dunn say that mov- for lots of complications, like infection scans will show the HO as “hot” well ing the joint can help preserve range of afterward, so it really should be a last after six months — because Type II HO motion. Many information sites on HO resort,” says Dunn. Garland emphasizes is very aggressive and continues to grow list radiation treatment as a way to stop the importance of discussing with your for quite some time. Identifying Type HO from growing, something Garland doctor the expected surgical outcome II is important because of its tendency cautions against. “I don’t think it is a good and potential complications, and wheth- to grow back following surgery. Once idea to be irradiating your average person er the surgery is worth it. again, check to make certain a bone scan with SCI in their 20s or 30s because it Prior to surgery, it’s important to affects the cells decades down the road have a bone scan to check that HO shows the HO has stopped growing. and can cause cancer. As soon as agents has completely run its course and isn’t For more information on HO, check like Didronel came along, I stopped doing growing anymore. If a surgeon cuts out out the resources below. The Craig radiation treatments on HO.” HO before it stops growing, it will grow module on HO provides a good primer, The typical case of HO in a person right back. In order to remove HO, the and SCIRE is an extensive peer reviewed with SCI runs its course in six months, surgeon does a wedge resection to cut it examination of the level of evidence for says Garland. Ask for a follow-up bone out. The surgery is followed up with an various treatment options for HO in SCI. scan to check that the area of HO no appropriate NSAID or Didronel to stop longer lights up. the HO from returning following the Resources Unfortunately, although medications trauma of surgery. • Craig hospital education module on can slow or stop the progression of HO, A caveat about surgery in acute SCI: a heterotopic ossification, craighospital. nothing can be done to shrink or reduce small percentage of HO cases — around it except to surgically remove the HO, 10 percent — fall under a different vari- org/resources/heterotopic-ossification usually only if it is seriously interfering ant, known as Type II. Such cases are • SCIRE Heterotopic Ossification with range of motion, which is not to be so rare that most physicians outside of Following Spinal Cord Injury, scireproj- taken lightly. It is important to find a sur- major rehab centers are not aware Type ect.com/wp-content/uploads/hetero- geon with lots of experience with HO. II exists, according to Garland. The pri- topic_ossification-version-6.0.pdf

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JUNE 2018 41 OUTDOORBy Kary Wright TRACKS

BUGGY FUN “OK, Joe, are you ready?” I say. “I’m ready to roll!” My brother, Joe, is always game. “I might need you to help steer or hit the brakes,” I say — sarcasm intended. “Just tell me what to do,” laughs Joe. I pull my left arm down on the hand control, the engine revs and off we go across the lawn. I move the wheel left and right to test the steering. The buggy Kary took his zigzags, and we head toward the open brother, Joe, for a spin. gate that leads to the field. I hear the roar of the engine, feel the breeze in my hair, smell the familiar smells of spring — what It all started a couple of months C5-6 quad with no hand function and a blast! We slow down going through ago. While cruising through spinal cord very weak arms, and it takes a lot of the gate, dodge a fence post and steer injury websites, my wife, Terry, noticed MacGyvering to make anything drivable to the right, accelerating as we head out an ad for an adapted dune buggy for for me. I took note of the phone number across the open field. Joe holds on tight sale. Knowing I’d be interested, she and decided to give it a try anyhow. as I head for the whoop-de-doos! Our immediately sent it to my computer. I About 25 years ago, the thought of stomachs rise up to our throats as we go looked it up, not taking it too seriously. adapting a Honda Odyssey was floating down over the hill, then at the bottom Usually anything that is already adapted around in my coconut, but I never got it the extra G-force sucks us down into the is way out of my price range and is not done. Now here was a similar unit that is seat. What an incredible feeling! designed for my specific injury. I’m a a two-seater and already adapted. Dirt- biking with friends was so much fun, but was it possible again? Frequently Asked Questions Some days later, I made the call. As What kind of engine is in it? it turns out, the buggy was adapted by The engine is 250 cubic centimeters, liquid-cooled. It has high and low and for a quadriplegic. In further coin- range and reverse. There is no shifting to do while driving. cidence, he happens to live 30 miles away. It actually hadn’t been for sale for How fast will it go? a couple of years, but the website was In low range, it will do about 25 mph, but has lots of power for hills. never updated. After chatting, Landon Landon told me that it would do over 50 mph in high range. and I discovered that we have pretty Do you need much strength to drive it? much the identical injury, with very simi- lar hobbies and attitude on life. Then I I’m quite weak and so far, tight turns are a bit hard. Like anything new, it recalled an email from a news team that will get better with time. had interviewed him, and by coincidence, Is it street legal? me, in the past. They were letting me It does have all of the signal lights and brake lights, etc. I believe in some states know that I should look him up because it is legal to drive it on the road, but living on acreage, I have plenty of room to we are so similar. I remember not being roam. It’s always best to check with your state’s motor vehicle division on what able to find him at the time. I then got modifications are necessary to make an off-road vehicle street legal. sidetracked and forgot about it. The more we chatted, the more we

42 NEW MOBILITY found we had in common. As it turns out, Landon and his friends were building “The previous owner received lots of offers another all-terrain vehicle for him that from nondisabled people is much more powerful and expensive, to buy the buggy, but with and he did not have room for both of all the work he put into them in his garage. He received lots of tweaking it to make it drivable by a quadriplegic, offers from nondisabled people to buy he did not want it to go to the buggy, but with all the work he put somebody who was going into tweaking it to make it drivable by a to just take all those adap- tations off. He offered it quadriplegic, he did not want it to go to at a bargain price that I somebody who was going to just take all couldn’t refuse.” those adaptations off. He offered it at a bargain price that I couldn’t refuse. Landon informed me that the steer- ing was low effort, taken out of a Saturn car. The hand controls were custom-made to fit the buggy, and the Do you Believe in Magic? driver’s seat can slide forward and back, and recline. He and his friends even made a second control, sort of an “oh- Bowel & Bladder Basics are our Business! crap-handle” that allows the passenger to hit the brakes or the throttle in an Urological Supplements Suppositories emergency, and they can easily reach Cran Magic + ™ The Magic Bullet™ the steering wheel from the right side. I bladder, kidney & urinary health. safe & sure! Faster acting, think this is an important safety feature, water soluble suppositories. especially for the first few rides. A couple of weeks later, my brother Mannose Magic™ Bowel Supplements and I borrowed a utility trailer and maintain a healthy urinary tract- flush headed over to Landon’s house. The away E.coli. Magic Cleanse™ buggy was in great shape, almost new. promotes fuller movements with greater ease He was a little sad to let it go, but was (and less time). very happy their creation was going to somebody who could use it. I am so grateful he let it go! Enzyme Magic™ So here we are, Joe and I, tearing better digestion= better elimi- around a plowed field on the maiden voy- nation. age. I steer to the right and we zip around the corner of a slough that is in the field, then back to the left and speed up for the long run toward the steep hill. I cannot believe the freedom of zooming around the field in an all-terrain vehicle. We race up the hill, and it climbs well for two- wheel-drive! After a quick turn-around, Mention This we fly through the field back to home. Joe * Ad and Receive jumps out and leaves the engine running. “Any other volunteers to go for a ride 5% OFF with him?” Joe asks. “I’ll try it!” says our friend, Sheila. She straps into the passenger seat, www.conceptsinconfidence.com and the crew pushes us back down the driveway. I pull the throttle down, the 2500 Quantum Lakes Dr. #214 engine roars once again and off we go, Boynton Beach, FL 33426 flying out into the field! (800) 822-4050 Driving an off-road vehicle is as fun *one time discount per customer as it gets!

JUNE 2018 43 ERVIN By Mike Ervin “I believe it was Jesus who said, ‘There will always be broke BROKE ASS CRIPPLES ass cripples If you’re trying to bring together a for Citizens with Disabilities Housing among ye.’” large group of cripples, like to orga- Task Force periodically puts out nize a protest or something, you can a hair-raising report titled “Priced attract a good number of them the Out: The Housing Crisis for People same way you attract alley cats. You with Disabilities.” Last year’s ver- put out free food. And just like alley sion found that the 2016 average cats, they’ll keep coming back. monthly Social Security payment for I know a whole lot of cripples the nearly 4.8 million adult cripples that will be there right on time, receiving Supplemental Security every time there’s free food to be Income was $763. But the report had. Exhibit A is a married couple also says the average rent for a I’d probably go to a hanging provided whose names I will change so that I “modest one-bedroom rental unit” they served free popcorn. can deny it’s them if they ever read was $861. Broke ass cripples have to hustle this and have a problem with it. I’ll I believe Lucy and Ricky both hard. I knew a cripple whose freezer call them Lucy and Ricky. Whenever receive SSI, which means their maxi- was packed with plastic storage bags there’s an event with free food, you mum monthly payment is $1,125. If full of helpings of her leftover Meals can count on them to show up. They they were friends not living together, on Wheels. And that was the barter pile their plates high and often bring their SSI maximum would be $750 currency she attempted to use to along a cloth shopping bag that they each. But when two cripples on SSI get people to do stuff for her. Like stuff full of leftovers until somebody get married, Social Security punishes for instance, in exchange for doing tells them to stop. And I bet if some- them by reducing their income. So I her laundry or taking out her trash body frisked Lucy and Ricky on their imagine when balancing their month- or whatever, she’d offer a friend or way out the door, they’d find they ly budget, Lucy and Ricky factor in a neighbor a bag of frozen chicken à have more food stashed away in lot of free lunches. la king. I suppose that’s a crime, like other creative places. Lucy and Ricky Because rents are so high and maybe Meals on Wheels fraud. But would make excellent smugglers. SSI checks are so low, “Priced at least she wasn’t selling drugs or I notice that people who live in Out” says that, in 2016, about her body or Amway products. nursing homes also tend to come 87,000 cripples were homeless, and Even if Lucy and Ricky weren’t running when the free dinner bell between 200,000 to 300,000 more broke ass, I think they would still rings. I used to think that some lived in institutions, nursing facili- take home a lot of leftovers from cripple elder ought to take these ties and other segregated environ- cripple gatherings, just like I always people aside and talk to them about ments. And the cripples residing in do. They seem to enjoy the thrill of politeness and decorum. Teach them nursing homes are the most broke some manners. Impress upon them ass cripples of all. Every month the the hunt, so they would probably still the importance of not developing a nursing homes confiscate their Social engage in this type of urban forag- reputation as a freeloader. Security checks and give them back ing as a hobby. But I believe it was But now the way I look at it is an insulting allowance of $30 for Jesus who said, “There will always be sometimes a cripple’s gotta do what the month. And nursing home food broke ass cripples among ye.” How a cripple’s gotta do, especially when tastes like lukewarm sludge. So hell true. And if we, their brethren, don’t those cripples are broke ass. For yeah, free food is alluring, especially supply them with the essential dog- instance, the Technical Assistance when it’s not powdered eggs and gie bags that get them through the Collaborative and the Consortium Kool-Aid. If I lived in a nursing home, month, then who will?

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G.I.M. Did Your The University of Tennessee Address Health Science Center, Depart- Change ? ment of Medicine is seeking General Internal Medicine SG-A601 If so, please provide candidate for primary care and $102 New Mobility with hospitalist position available in your updated the Division of General Internal information so you Medicine. BC/BE in Internal will not miss Medicine required. Academic a single issue. rank (Full Professor) based $320$279 on qualifications. Excellent Full Name, Street Address, benefits package. Send CV/ $310$27999 City, State & Zip Code are cover letter to Samuel Dagogo- needed for both the Jack, M.D., General Internal old & the new address. Medicine, 956 Court Ave., Suite Please allow 6-8 weeks for D334, Memphis, TN 38163 or this change to be processed. email to [email protected]. The Please mail to: University of Tennessee is an 120-34 Queens Boulevard, Suite 320 EEO/AA/Title VI/Title IX/Section Kew Gardens, NY 11415 Or submit your request electronically to: 504/ADA/ADEA institution in [email protected] or at the provision of its education www.newmobility.com and employment programs. Or call: 800-404-2898 x7203

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JUNE 2018 47 CRIP THE BEST OF DISABILITY BLOGS BUZZ AND BANTER

HE SAID WHAT? What do Ken Jennings, Donald Trump and a more LRT: “Noting sadder than a #HotPersonInAWheelchair” obvious troll named named Ken Jennings and that Cry about it, babe. Daniel Lawson have in common? #HotPersonInAWheelchair All three slammed disabled That 2014 Tweet by people on the internet, and Jeopardy’s biggest winner got slammed back Ken Jennings saying “Nothing in return. sadder than a hot person in a wheelchair” still burns Annie Segarra. So she Tweeted, “Cry about it, babe,” and created #HotPersonInAWheelchair, Definitely not Werewolves which you can join on Twitter, A Twitter troll drew the fire he relishes by exclaiming real Facebook and Instagram. disabled people have no business being out after 5 p.m. Jennifer Lee Rossman’s perfect response:

Paralympics are ‘Tough to Watch,’ says Donald Trump Immediately after calling them “inspiring,” Donald Trump said Paralympians are “tough to watch,” which drew a collective gasp across the world and this response from the Paralympics.

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