A Day in the Life Four Wheelers on What It Takes Life Beyond Wheels

Back to School A Very Personal Letter Sommelier on Wheels

A Day in the Life Four Wheelers on What It Takes life beyond wheels

newmobility.com SEP 2015 $4 NATURAL MOBILITY WITH THE WIJIT LEVER-DRIVE & BRAKING SYSTEM FROM INNOVATIONS HEALTH fter breaking both of his legs and sustaining other serious injuries during a night training jump while a member of the 37th Engineer Battalion, Iraq War veteran Josh Steward was forced into a manual wheelchair.

(800) 659-4548 www.InnovationsHealth.com Powered by NATURAL MOBILITY WITH THE WIJIT LEVER-DRIVE & BRAKING SYSTEM FROM INNOVATIONS HEALTH “I didn’t know if I would ever be able to do the friends, I flew up and down the hills while they things I love again,” said Josh. “I’m able to get were 100 yards behind, struggling to keep up.” around for short distances with a cane or crutches, Because Wijits don’t require you to grasp and but most of the time I have to be in a wheelchair, release, they are perfect for individuals with and because of hand injuries I can’t even get around limited hand function. And Wijit’s inverted-press a grocery store using push-rims.” Josh has regained motion is much easier on the shoulders than his mobility with the Wijit lever drive & braking the forward rotation of the shoulder required system, and is now able to get healthy exercise while for push-rim use. Wijits feature a nearly 1-2 gear pursuing his love of nature. ratio that makes it easier to climb hills, and its “With Wijits, I can easily climb hills, turn on a dime, independent brakes allow you to easily maneuver and go just about anywhere I want.” Whether and safely descend. outdoors or at the mall, Wijits allow Josh to live his Covered by the VA and most public & private life to the fullest. “I’ve been to Disneyland twice with insurance, Wijits are easily installed on most my Wijits and was able to spend all day enjoying the manual wheelchairs. Call or visit us online to learn park without my wife having to push me around,” more, and then ask your doctor for a prescription he said. “When we were in San Francisco with some for Wijits of your own. EXTEND YOUR REACH

WITH THE KINOVA JACO JACO is the assistive robotic arm from Innovations Health that attaches to nearly any power wheelchair and is operated by most controllers (including sip and puffs) to allow you to eat, drink, open doors, and perform a wide variety of ADL tasks without assistance. Visit www. InnovationsHealth.com or call us at (800) 659-4548 for more information. Personal online or in- person demonstrations are availableEr uponGO saferequest. transfertrans harness

ErGOtrans GoWing safe transfer harness Powered by WHILL is Now On Sale!

Our production models are finally ready to be shipped. Plan your weekend without thinking twice about where you can go. You can take WHILL out with your friends and enjoy brunch at your favorite cafe. WHILL is a personal mobility device for everyone, so you do not need a prescription for purchase.

Order your WHILL today.

Book a Test Drive The WHILL Model A is not considered to be a medical device and has not been submitted to the Food and Drug Administration for review or clearance. 1 (844) MY-WHILL | whill.us

WHILL Magazine Ad - August.indd 1 7/2/2015 5:09:44 PM CONTENTS VOLUME 26 NUMBER 264 September 2015

life beyond wheels FEATURES

13 NIPPING INFECTIONS BEFORE THEY BUD Conventional wisdom says to take antibiotics sparingly. What if conventional wisdom is wrong? BY TIM GILMER

19 THE WINE MAN For sommelier and para Yannick Benjamin, nothing is better than bringing people together over a great bottle of wine. BY IAN RUDER

25 LETTER TO A MOTHER LAURITA TELLADO was asked a heart-rending question, “How can I ensure I won’t have a baby with your disability?”

44 CHASING THAT DEGREE Going to college after an SCI is different, but not impossibly so. STEPHANIE LOLLINO shares stories of students who have made it work. Mowery Lauren by Photo

COVER STORY FOUR WHEELERS, FOUR STYLES, ONE DAY 28 Have you ever wondered how other wheelchair users organize their days? We have, too, and asked ALEX GHENIS, PAULA LARSON, IAN JAQUISS and ELLEN STOHL to let us tag along with them for one day. We go to work with them, meet their families, learn how they adapt, and see what products they use to make it all come together. Cover and Contents Photos by Eric Stampfli

DEPARTMENTS

4 BULLY PULPIT 40 UNITED SPINAL NEWS 5 CONTRIBUTORS 48 INNOVATIONS 6 LETTERS 50 PARA/MEDIC 8 NEWS 52 ERVIN 10 SCI LIFE 55 CLASSIFIEDS 39 SPOTLIGHT 56 CRIP BUZZ BULLY PULPIT

life beyond wheels SEPTEMBER 2015

NEW MOBILITY IS THE MONTHLY MAGAZINE OF

PRESIDENT & CEO: JAMES WEISMAN VICE PRESIDENT OF PUBLICATIONS: JEAN DOBBS

EDITORIAL EDITORIAL DIRECTOR: JEAN DOBBS Criplessness EDITOR: TIM GILMER Many of us like to say things like, my dis- MANAGING EDITOR: JOSIE BYZEK ability does not define me, and I don’t think “On my 3,482nd birthday, I will SENIOR EDITOR: IAN RUDER SENIOR CORRESPONDENT: BOB VOGEL of myself as disabled, but really, just how far have lived 99.426 percent of my can we go with that mindset? I remember making travel easy for individuals with spinalEDITORIAL cord disabilitie SUBMISSIONS:s life with a disability.” [email protected] it was a big deal when I turned 40 and realized that since I was paralyzed at 20, paralyzed, below-the-knee amputee my life could be divided neatly in half — 50 wheelchair user in this class. What makes it percent able-bodied, 50 percent disabled. CUSTOMER SERVICE interesting, at least for me, is no one in the Now that I am 70, I have to lay hands on a Toll-free 800/404-2898, class knows that I am sitting in a wheel- calculator to figure the percentage. Let’s ext. 7203 chair. They only see me from my chest up. see, 50 divided by 70 = 72.429 percent of I have the perfect setup to exercise the my life I have lived with a disability. mindset of I don’t think of myself as disabled ADVERTISING SALES Mathematically, for those of us with because as far as anyone knows, I am not. 718/803-3782 acquired disabilities, the percentage grows Usually, in public or when meeting peo- NATIONAL SALES MANAGER: each day but will never quite reach 100 per- MEGAN LEE, EXT. 7253 cent, even if we live to be 3,482 years old. In ple in person for the first time, my disabil- AD MATERIALS: my case, on my 3,482nd birthday, I will have ity is the most obvious thing about me. But DEANNA FIKE, EXT. 7250 lived 99.426 percent of my life with a disabil- now that I have a foolproof opportunity to reverse that perception, I have no need for PRODUCTION ity. And what of those of us who were born with a disability? If you have been disabled it. In fact, the opposite is true. I am dying PRODUCTION MANAGER: DEANNA FIKE for 100 percent of your life, how can you not to tell my classmates that I am paralyzed, crippled, with one leg missing below CIRCULATION think of yourself as disabled? I will let you in on a little secret. At the the knee, and that I have been wheeling CIRCULATION MANAGER: age of 70 I enrolled in an online class at a around for 50 years. My crippled identity is BEVERLY SMITH major university. It doesn’t matter what the just bursting at the seams to express itself! CIRCULATION COORDINATOR: Calm down, Gimpster … calm down. MARIA KURTZ subject is. The class is run like an intimate workshop. We started with eight in the But since the class has nothing to do POSTMASTER: Send address changes to New Mobility, 120-34 class, and now we are down to seven. We with disability, I can’t find a logical way to Queens Blvd, #320, Kew Gardens NY 11415. Subscription rates: $27.95/year; $35.95/year in Canada; meet once weekly for three hours by Skyp- divulge my true identity, unless I decide $67.95/year international via airmail. ing. We look at each others’ faces and listen to spontaneously blurt it all out and spin New Mobility (ISSN 1086-4741), Volume 26, Issue 264, is published monthly by United Spinal Association. to ourselves interact with the instructor and circles and do wheelies in a wanton display Copyright 2015, all rights reserved. Reproduction without each other, and I would estimate that I am of — dare I say it? — disability pride. permission of any material contained herein is strictly prohibited. We welcome comments; the oldest student by at least 30 years. I’m Truth is, I feel damn good about my dis- we reserve the right to edit submissions. older than the instructor by about 20 years. ability. Without it, I am not me. Periodicals postage paid at Flushing, NY and additional mailing offices. I’m also quite sure that I am the only — Tim Gilmer www.newmobility.com

4 NEW MOBILITY CONTRIBUTORS life beyond wheels SEPTEMBER 2015

After sustaining an SCI in a car accident in 2002, Erin Gildner CONTRIBUTING went on to complete her undergraduate degree, get married EDITORS and work for the state of Arkansas in several different agencies MICHAEL COLLINS and positions. She is now a program specialist for the Arkansas MIKE ERVIN Disability and Health Program and hopes to complete her mas- ROXANNE FURLONG ter’s in public health by 2016 at the University of Arkansas for RICHARD HOLICKY Medical Sciences. She lives in Bryant, Ark., with her husband, PRISCILLA MALTBIE Ryan, their two sons, two cats and a shaggy dog. ALLEN RUCKER ROBERT SAMUELS ERIC STAMPFLI San Francisco Bay Area native Eric Stampfli, a paraplegic 40 years ELLEN STOHL post-injury, has spent more than 30 years breaking down doors BOB VOGEL in the challenging world of advertising photography. Having LOREN WORTHINGTON taught at the university level, he is now actively switching gears and creating artwork of a different kind. Encouraged by many of his design students, Eric will be celebrating his first solo fine art photography show in Los Angeles this October. He describes himself as “an evangelist for all things creative,” and as a teacher COMMUNITY PARTNERS has helped hundreds of students find their artistic voice. KIM ANDERSON CHRISTIAAN “OTTER” BAILEY Laura “Laurita” Tellado was born in San Juan, Puerto Rico. An only MARTY BALL child, she was 3 when her family moved to Orlando, Fla., where FINN BULLERS she has resided ever since. Tellado is a freelance writer and blog- TIFFINY CARLSON ger for Holdin’ Out for a Hero and Espresso con Leche. As founder LAWRENCE CARTER-LONG and president of The Laurita Spina Bifida Project, she works to RORY COOPER promote positive awareness of spina bifida and unite SB com- JASON DASILVA munities globally. She holds a bachelor’s degree in interdisciplin- DEBORAH DAVIS ary studies from the University of Central Florida. Follow her on TOBIAS FORREST Twitter @Laurita86, @TheLSBProject, and @HoldinOut4Hero. JENNIFER FRENCH ALLISON CAMERON GRAY MINNA HONG MARK JOHNSON FEATURED PARTNER GARY KARP NANCY BECKER KENNEDY Mark Johnson is director of advocacy at Shepherd Center in BRITTANY MARTIN Atlanta. He also serves as chair of the ADA Legacy Project, which LINDA MASTANDREA is working to preserve disability history, celebrate its milestones, LYNN MURRAY and educate the public and future generations of advocates. ASHLEY LYN OLSON Mark has a master’s in guidance and counseling from University SCOTT RAINS of North Carolina at Charlotte. He is one of the founders of TEAL SHERER ADAPT and has received numerous awards for his advocacy and MITCH TEPPER organizing across disability, health and human service organiza- REVECA TORRES tions. He is married and has one daughter. His memoir, I Love ANTHONY TUSLER Today, was published in June 2015. KARY WRIGHT

SEPTEMBER 2015 5 American Cowgirl Road Trip USA New Perspectives

25 Years of ADA: Progress, Promise and Potential

LETTERS life beyond wheels “Our fight is continuous.”

newmobility.com JUL 2015 $4

Those Who Went Before: Thanks so I started looking for another job. I came that claim ADA compliance refuse to take Our fight is continuous … [“ADA: A People’s across some jobs listed on Rush & Company’s on this responsibility because of costs — History,” July 2015]. Even though my voice website. I applied and the recruiter respond- when burden of costs is not legal grounds is not always heard, my presence can’t be ed in an email that none of her clients would for exemption from the ADA. ignored. Thank you to those who have gone hire someone in “my condition.” She refused Jane Klingsten before us to make way for the future. Happy to send my resumes to any of them. University of Michigan 25th anniversary to the fight! After two years of consulting, I sent in my Barthenia Rochester, Peer Support Specialist, resume again [to the same recruiting compa- Amberley Snyder: In Awe Independent Resources, Inc. ny] and followed up with several emails and This story [“American Cowgirl,” July 2015] phone calls. No reply by email or phone. gives new meaning to the saying, “Hard ADA Not for Disabled The job descriptions posted on Rush & work beats talent when talent doesn’t work I’ve been using a wheelchair for nearly Company’s website do not list any physi- hard.” I am in awe. 34 years, and when the Americans with cal requirements. I am now in the process Amy Rast Disabilities Act went into effect on July 26, of filing a complaint with the U.S. Equal Lyndon State College 1992, I was very excited! [“25 Years of ADA,” Employment Opportunity Commission. The July 2015]. Unfortunately for the disabled owner of Rush & Company called and fol- Access Improved community, the ADA merely recognizes lowed up with a couple of emails pointing I’ve been traveling routinely since 2007. one’s disabilities … nothing more than that. out that they had to follow “strict” guide- Finding real accessibility is rare [“USA: Cross- For the nondisabled community, the ADA lines from their clients. I take “strict” as code Country Road Trip,” July 2015], but I’ve is great! Just think of all those blue placards for “no one with a disability.” To date they found ways around most everything and hanging from rear-view mirrors in your local have not contacted me on the positions I post my findings on TripAdvisor under the Wal-Mart parking lot! For those of us who applied for on their website. name Cajun71. I have been to Niagara Falls need the ADA, it does next to nothing. For After going through the DOJ, DOL and in Canada and the U.S. side. The Canadian those people exploiting its benefits solely several other agencies, I don’t feel confident side is much more accessible, and getting for conveniences like closer parking spaces, the bureaucracy is going to do anything. gasoline was a treat — they still have atten- the ADA is great! That brings me back to the ADA. If you want dants at some of the stations. I was para- Joe Reto to file a lawsuit over being denied a seat at lyzed in 1980, and life has improved as far as Brick, New Jersey a football stadium, the feds and lawyers will access since those early days. line up to help you. As for those of us in the Dawn Marie Klug On the Hamster Wheel trenches trying to get a job, they put us on a Saint Leo University Your column on the ADA [Bully Pulpit: hamster wheel, hoping we will go away. “Winning Hearts and Minds,” July 2015] Jim Harris New Models Better prompted me to write. In 1992 I was a [non- Bybee, Tennessee When I have discussed RV travel with disabled] plant manager of a small facility in those individuals with impaired mobility Soddy-Daisy, Tenn. Fast forward to 2005. I Work to be Done [Motorvation: “Recreational Vehicles — At was in a plane crash in Grand Junction, Colo., I totally agree that the work isn’t done [“Stay Home on the Road,” July 2015], the one thing and sustained a T12 incomplete injury, which Strong, ADA! There’s More Work To Do,” July I always hear is that the bathrooms are too left me in a wheelchair. I worked hard, went 2015]. Something that is still commonly dis- small or configured so the commode is right back to work in March 2007. Fortunately missed in northern states is that public side- up against a wall with the sink almost in one’s my old boss at a company I had worked for walks must be cleared of snow and ice for lap. The newer models that have a bathroom previously had no problems with me being accessibility. The DOJ Civil Rights Division and sink in one are better because they give in a wheelchair. He said he knew I could do has repeatedly stated that the debris remov- more room and the person can sit to bathe. the job of a process engineer. But by 2013 he al for accessibility in the ADA includes ice Jean Baker retired, and the company was bought out, and snow. Yet the most progressive places Via newmobility.com

6 NEW MOBILITY VMI NORTHSTAR

You could win a FREE VMI wheelchair van conversion!

The VMI Northstar has been the No. 1-selling in-floor ramp system for more than 20 years due to its industry-leading ease of use and reliability. Because there is no manual labor or complicated deployment process, 90% percent of end users prefer our in-floor ramp to a fold-out version. With a ramp that slides out from under the floor at the push of a button, the simplicity and convenience of VMI’s in-floor system is truly the easiest to use for independent wheelchair users and caregivers alike. VMI strives to recognize the unique needs and challenges of our customers, and we’re inviting you to tell us what works best for you. We’re challenging anyone and everyone to compare their current mobility vehicle against a VMI wheelchair accessible van. VMI is committed to providing the most advanced mobility solutions for people with disabilities, and your opinion counts! Enter for your chance to win a FREE VMI wheelchair conversion for the Toyota, Honda, Chrysler or Dodge minivan of your choice at VMIChallenge.com, or visit your local VMI Mobility dealer to compare. We’re that confident in our mobility vans and their life-changing advantages.

Visit vmichallenge.com for applicable terms and conditions.

Visit VMIChallenge.com or call 855-VMI-VANS for your chance to win a free VMI conversion! NEWS By Mark J. Boatman

Steve Gleason Act Signed Into Law tracking technology that operate speech- Bronx Medical Center It’s about to become a lot easier for people generating devices. The law removes Sued Under ADA with speech impairments to get Medicare these communication devices from the A Bronx, N.Y., medical center is facing to cover their speech-generating devices, “capped rental” category, so that hospi- legal troubles after a federal lawsuit was as President Obama signed the Steve tals, hospices and nursing facilities can be filed against it on July 29 over complaints Gleason Act into law on July 30. reimbursed for them. that it fails to treat people with disabili- “People like myself, who are literally “Steve feared thousands of people ties. The suit against Union Community voiceless, were heard, loud and clear,” said would lose their ability to communicate Health Center cites numerous architec- former New Orleans Saints football player with the world around them — to share tural barriers, inaccessible medical equip- Steve Gleason in a statement made ear- their stories, order coffee, tell jokes, ask ment, and problems with untrained staff lier this month when the bill passed the for help, or say ‘I love you,’” said the that fail to adequately assist wheelchair House of Representatives. “This legislation bill’s lead sponsor, Rep. Cathy McMorris users — often even turning them away. may have my name on it,” said Gleason, Rodgers, a Republican from Washington. “This is an issue of a full service com- who has ALS, “but please know it is the “Before eye-tracking technology became prehensive medical center that prides ALS community and the diligent legisla- available, once people lost their ability itself on serving the community around tors who deserve our applause.” to type, they could no longer communi- it,” says Michelle Caiola, senior staff attor- The legislation is intended to ensure cate, but that all changed with this revo- ney for Disability Rights Advocates. “To that Medicare will cover the types of eye- lutionary innovation.” have these barriers and not treat those People in the News: Alice Wong Meets President Obama Virtually

isability scholar and advocate Alice Wong made history by those around her through an interactive video screen without becoming the first person ever greeted by a president of leaving her home in San Francisco. Dthe United States while driving a telepresence robot. Wong was delighted by how easy the technology was to use. Wong, who has spinal muscular atrophy, received an invita- “Once you log on, you see the image of the room [where the tion to the July 20 ADA reception hosted by President Obama, Beam Pro robot is] and below that are two smaller screens — a but regretfully she turned view of the floor so you don’t hit anything and a screen that it down, since flying to showed my face,” she says. Washington, D.C., from San Before the reception began, Wong, using her robot-avatar, Francisco would be too dif- waited in the Blue Room. Suddenly the president came on the ficult. The story could have screen and she was introduced. “Thank you for your leadership,” ended right here, but much he told Wong. She nervously replied, from thousands of miles to her surprise and delight, away, yet present within the Beam Pro, “Thank you for every- the White House Office of thing you’ve done for Americans with disabilities.” President Public Engagement sug- Obama then asked Wong to demonstrate the technology, so gested a solution: She could she maneuvered the robot to the left and then to the right. The borrow the Kennedy Center’s interaction was over quickly, but Wong is thankful the robot Beam Pro, a telepresence made their meeting possible. device. The Beam Pro is a The East Room was packed to capacity, yet using the Beam driveable robot with a screen Pro, Wong made her way into the audience of fellow advocates. perched on top of it, and After the reception, Pete Souza, the president’s photographer, using this avatar, she could tweeted and Instagrammed a photo of Wong with the president drive and communicate with — the first ever such meeting. Photo by Pete Souza

8 NEW MOBILITY with disabilities on an equal basis as any- being served ought to be going up. And one else who wants to walk in and use NUMBER OF BRONX RESIDENTS WHO HAVE this has been happening now — and the facilities is a problem.“ ONE OR MORE DISABILITIES: we’ve been sounding this alarm — for a Disability Rights Advocates brought couple years.” the ADA lawsuit against UCHC on behalf 176,915 State officials say KanCare inherited of Bronx Independent Living Services an outdated waiting list. They claim OF 62 NEW YORK COUNTIES, RANKING OF and individuals with disabilities. Caiola hundreds of new enrollees are receiving BRONX COUNTY FOR HEALTH OUTCOMES: says the violations degrade the quality of services, but the total of people receiving care at UCHC and endanger the health of services is dropping through natural attri- people with disabilities. #62 tion. The state won’t share its data, so this Brett Eisenberg, BILS executive — DISABILITY RIGHTS ADVOCATES can’t be independently verified. director and plaintiff in the suit, uses a “Overall it’s really hard to tell how power wheelchair due to osteogenesis Is KanCare Dumping PAS KanCare has been working out because imperfecta. He says getting care at the the state has data and information center is a safety risk, plaintiffs have Recipients? related to goals, accomplishments and tried working with UCHC to no avail, Something is amiss with KanCare, Kansas’ so on that I don’t have access to,” says and he just wants to be treated fairly. managed care system, warn advocates. Mike Oxford, the executive director of “We just want them to be accessible While the state’s personal assistance the Topeka Independent Living Resource for us and other individuals with dis- waiting list has shrunk by 1,500 — pre- Center. He says the state has been less abilities,“ he says. sumably a good thing — the number of than transparent. Caiola is troubled that these issues people receiving services has also shrunk. After advocates shared their concerns are still occurring. “These facilities had 25 “That’s very counterintuitive,” said about KanCare with officials from the years to bring themselves into compli- Rocky Nichols, executive director of National Council on Disability on July 7, ance, and they should certainly know the the Disability Rights Center of Kansas, the Department of Justice has agreed to law,” she says. “That they’re still function- to the Kansas Health Institute news investigate. Meanwhile advocates remain ing in a way that doesn’t provide equal service. “If your waiting list numbers concerned that people who need ser- access is disheartening.” are going down, the number of people vices are now going without.

GREAT FOR: • Overactive legs that move during sleep. • People who spend all night in one position and risk bed sores. Frog Legs are lightweight and durable, • People who have trouble reaching their legs allowing users to reposition their legs when they while laying down. spasm or become uncomfortable. • Someone who wants an easier transition Frog Legs can be used with ease while back to sleep when waking to reposition. lying down, eliminating the need to sit up or thrash around in order to roll over. Frog Legs are eﬀective for anyone with limited lower body or leg mobility. Frog Legs can give people with impaired use of their hands the chance to be more independent.

To order visit: www.froglegmobility.com

SEPTEMBER 2015 9

SCI LIFE

By Tiffiny Carlson

Stand Out, Be Safe “There is There is an unfortunately high number of no greater wheelers hit by vehicles each year, and the main reason for this is that wheelchair users satisfaction than are not easily seen by drivers. Safer to Be Seen wants to put an end to this sad state of affairs helping others with its VISIBAG — a high visibility bag for climb the ladder wheelchair users. The VISIBAG has high-visibility panels and of success.” wide reflective strips that are arranged on the bag to make sure you are seen by drivers, no matter the weather or light conditions. Wheelchair users have used reflective tape for Rising From the Ashes years, essentially doing the same thing, but this is a definite upgrade. Kevin Saunders, a Paralympian Randy Snow, for helping him The bag measures 18 inches tall and 14 who has done way more than get there. “I became friends inches wide. For some wheelchair users this just compete, is passionate with Randy,” he says, “And we may be too large, but the reflectiveness of about many things, but his trained together for many years. the bag trumps the size. If you are out on the most important passion is let- They both participated in the streets often, this is the bag for you. ting people know what their 1988 Seoul Paralympics, with Look it up at www.safertobeseen.com true capabilities are. Saunders Saunders winning a bronze in had just graduated from track and field. Kansas State University and Throughout the 1990s, landed a job as an inspector for Saunders honed his wheelchair the FDA when he was injured road racing skills. He has com- at the T5 level in 1981. While peted in over 700 races, many of on the job in Corpus Christi, them marathons. He was also the Texas, a grain silo exploded, first person with a disability to killing 40 people and throwing serve on the President’s Council Saunders 300 feet. on Fitness Sports and Nutrition, When he awoke and doctors which he did under President told him he would never walk George H. W. Bush. again, he was shocked. “When Motivational speaking now the doctors told me that I was is his main passion, one that has a paraplegic, I fell into a mas- taken Saunders all around the sive depression,” he says. “How world. “I show audiences how Ask Before You Jet Set could I have been hurt? I was to bring out their peak perfor- It may be based in Croatia, but Travabled.com 24 years old, newly married and mance,” he says, “focusing on is the latest travel site to give disabled travelers with a baby on the way.” fitness and education. I truly what they have been dreaming of — an online But slowly Saunders found believe that there is no greater community where you can get trusted travel purpose in life again, and it satisfaction than helping others advice from other disabled travelers. Plenty of was through wheelchair rac- climb the ladder of success.” accessible U.S. domestic and international trav- ing. He credits one of the Learn more at www.kevin eling advice is available. greatest wheelchair athletes, saunders.com Go to www.travabled.com

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

CEO-TWO® Laxative Suppositories combine Bowel regularity is no accident with Sodium Bicarbonate and Potassium Bitartrate CEO-TWO Laxative Suppositories! in a Polyethylene Glycol Base. Upon insertion into the rectum, the pre-moistened suppository • Water-soluble formula reacts with the moisture present to produce • Self-lubricating

carbon dioxide gas. This CO2 gas gently expands • No refrigeration necessary – perfect for travel the lower bowel and creates a reflex stimulation • Individually wrapped and easy to open resulting in an urge to empty the lower bowel • Unique tapered shape makes retention easier, within 30 minutes. Moreover, there is no chemical providing satisfactory results every time stimulation to the bowel, no painful cramping, no • Comfortably empties the last 25 cm of the lower diarrhea and rarely a second urge to defecate. bowel within 30 minutes • Does not cause irritation or cramping, unlike stimulant laxative products

ORDERinG inFORMATiOn: ORDER by phOnE ORDER OnlinE Box of 2 suppositories ...... NDC #0283-0808-11 Box of 6 suppositories ...... NDC #0283-0808-36 1-800-238-8542 www.amazon.com Box of 12 suppositories ...... NDC #0283-0808-12 M-F: 8:00 a.m. – 4:30 p.m. ET Box of 54 suppositories ...... NDC #0283-0808-54

LLC CEO-TWO is a registered trademark of Beutlich® Pharmaceuticals, LLC. CCA 469 0215

10 NEW MOBILITY USA

Introduces The All-New Military Grade Stainless Steel Side-Entry

Reinforced Marine Grade Cutting Edge Lowered Floor Hydraulics Design

Strength, durability and the safety Powered by Kneelvan™ technology, The benchmark for longevity and your family deserves. Freedom Mo- the automatic side-entry Toyota quality in a wheelchair accessible tors USA places your family’s safety Sienna comes equipped with heavy vehicle just got set a little higher. first. Why settle for anything less duty marine grade hydraulics. Built to last, the all-new military when you can drive with piece of Constructed with longevity in grade stainless steel flooring in the mind delivered from our reinforced mind, our specially equipped Toyota Sienna side-entry tackles tubular steel lowered floor. Built hydraulics last longer and stand the harshest conditions, prevents with the same technology race car up to extreme temperatures. Don’t corrosion and provides years of teams use to protect their drivers. settle for electric ramps, choose worry free operation. reliable hydraulics.

Engineered to free the human spirit.

1-800-625-6335 / www.fminow.com *Mention this ad and code “mobility5” and save $500 on your next purchase. *Must be redeemed before purchase and not to be used with any other offer. Is Long-term Daily Use of Battle of the Bugs: Low-Dose Antibiotics Safe? Illustration by Doug Davis

BY TIM GILMER Most doctors will tell you that long-term daily low-dose use of antibiotics is not recommended. It can lead to the development of resistant strains of bacteria, an increasingly serious problem. But sometimes, the benefits can outweigh the risks.

any of us have had problems with femoral artery graft. The wound finally and took a complete medical history, infected wounds or sores. Over began healing with improved circula- pre- and post-injury. He then wrote up a Mmy 50-year life as a T11 para (I’m tion, but the infection had gotten into plan of treatment, which included using now 70), I have had about 20 cellulitis my bone. The heel of my left foot liter- Unna boot compression wraps (changed infections — five in one year. In 2012 ally rotted away. Amputation was the twice weekly), compression therapy I got what seemed to be the mother of best choice at that point. when the wound healed, a possible all cellulitis infections in my left lower A year later the same thing happened venous ablation procedure to correct ve- leg. What started as a large blood blister to my right leg, but this time the femoral nous insufficiency from my calf “muscle turned into a larger, nasty, deep wound. graft prevented amputation. pumps” not working properly, zero No matter what I did — take the At this point Dr. Bruce Ruben, who external pressure, and a daily dose of usual meds or frequent the wound care had been acting as a medical advisor amoxicillin as a long-term prophylactic clinic, the wound did not show signs of from his home state of Michigan, came to lower the risk of further infections. healing. I took my cephalexin, went to to see me while vacationing not far from Dr. Ruben prescribed my prophylac- a vascular surgeon, wore a wound vac, where I live in Oregon. In my home tic daily dose of amoxicillin only after had a stent implanted and an artificial he examined my still healing wound a thorough evaluation. He treated me

SEPTEMBER 2015 13 — not just my wound — my whole body, germs on my body — the most common promised. New Mobility contributor my lifestyle, my history, and he did so bacterial invaders in cases of cellulitis. Allen Rucker was struck by transverse carefully and with complete understand- “Your own body is the key to this,” myelitis in late 1996, effectively becoming ing of all medical options. Ruben told me. “There are 11 trillion a lower thoracic para overnight. Not long So far, after two years of taking 250 perfect copies of white cells manufactured after that he developed sores on his outer mg. of amoxicillin twice a day every day, from your bone marrow each day. They ankles. “A number of these got infected I have had no skin problems, no infec- are the first defense infantry that protects and turned into cellulitis,” he says. “I tions. And as a possible beneficial side you from invaders. So as long as staph would be hit by a fever and get very sick, effect, I have not had a single UTI in and strep stay on your skin, and they do 103 degrees or so, and have to go to the that same time period, the first and only cover you, they usually don’t bother you. ER. My foot and lower leg would get red time this has ever happened. But Ruben But when you cut yourself [or have a crack and sometimes a red line would start would be the first to say that taking an or wound on your skin], those 11 trillion creeping up my leg.” Usually a vancomy- antibiotic daily is not the sole reason for white blood cells circulate through your cin drip did the trick, but the problem my infection-free status. blood and target your skin where the would return from time to time. “Some- In my case, restored arterial blood sup- breakthrough occurs. Within seconds times it seems I didn’t even have to have a ply is critical. Since I can’t deal with com- they have eaten up the bacterial invaders visible break in the skin.” pression stockings, compression therapy and your wound is left to heal itself.” Another problematic area was with daily Ace bandage wraps is the key to Once my body’s problems — poor Rucker’s trochanter — the bony promi- preventing edema. Treating athlete’s foot circulation, edema, dry skin, unnoticed nence where the thigh and hip attach. to prevent skin cracks between toes, etc., pressure — had been corrected, healing About two years ago he had especially is also important. Using lotion or Vaseline followed. “Antibiotics are not an answer bad cellulitis in that area and had to be ointment on my legs to prevent dry skin to disease,” says Ruben. “They are an ad- hospitalized for several days. Doctors is another preventative measure. And of junct to your natural immune system for tried various meds, but nothing worked. course, avoiding pressure is a must. treatment of disease.” “The infectious disease doctor told me But the last step in tilting the odds in they could not ID the invading bacteria,” my favor was the daily use of a proven, More Cellulitis Stories he says. “That was a scary moment. Fi- safe antibiotic, not as a “cure,” but to Cellulitis can strike anywhere, but most nally they found the right ‘cocktail’ mix, reduce the numbers of strep and staph often it is wherever circulation is com- and following that they did a tricky skin Barrier Free Lifts To meet the individual’s needs

We serve individuals with disabilities, caregivers, and health care institutions with an extensive line of patient lifts and slings.

th 1620 SW 17 St. Ocala, Fl. 34471 Phone: 1-800-582-8732 Email: [email protected] Fax: 1-866-378-3318 www.barrierfreelifts.com

14 NEW MOBILITY flap operation. That’s when my doctor disease-resistant bug from taking a daily “are only take antibiotics when you are decided I should take 250 mg. of Keflex antibiotic worry him? really sick, and if you’re not sick, don’t go [cephalexin] twice daily. It has been “No, not at all,” he says. “I read stud- to the doctor.” about two years and I haven’t had any ies and discussed this at length with Dr. A bacterial build-up is not the same recurrence of cellulitis since then.” Ruben. I have full confidence in him as infection. People with SCI and neuro- Rabbi Herschel Finman, 57, also sees and in the prophylactic treatment, and genic bladder tend to have large numbers Ruben. “I have neuropathy, no sensation I don’t expect infection to return at all.” of multiple types of bacteria adhering to in my feet, and I get athlete’s foot but He takes 250 mg. of penicillin twice a the walls of the bladder. This can result don’t know it.” Finman has had three day to keep the numbers of harmful in cloudy, smelly urine and feeling “off,” cellulitis infections in the last few years. streptococci bacteria low and has been but absent fever or pain, it is most likely “About one a year,” he says. “The first infection-free for three years now. a colonization, not a true infection. Usu- time I got cellulitis I ran a 104-degree fe- ally drinking water and cathing more ver and got very sick. The redness started What About UTIs? frequently can clear out an asymptom- in my foot and traveled above my ankles Taking low-dose antibiotics for urinary atic bacterial buildup. Symptoms of true to about mid-calf.” Since Ruben offers tract infections is more complicated infection are fever, possibly chills, back IV infusion therapy seven days per week than with cellulitis. For those of us who pain, spasms, and autonomic dysreflexia. in his office, Finman went there instead have spinal cord injuries, a UTI can be Eric Stampfli, 57, is a T11-12 para, of the ER. “I went in twice a day for a difficult to self-diagnose, unlike cel- 40 years post-injury. He went through week. The fever broke right away, and I lulitis, which results in visible redness, bladder training in rehab at Santa Clara went back to work.” swelling, and often a high fever. Low- Valley Medical Center, where he began But cellulitis came around a second grade UTIs can be mistaken for a sore wearing an external condom catheter time and a third time. In all three cases, back, fatigue, or other problems. Because and a legbag. Due to uncontrollable leak- he went in for infusion therapy with of this, many of us with SCI tend to call age at unpredictable times, he still uses penicillin, and in all cases the infec- the doctor and ask for a prescription at this system. tion responded right away. Still, he and the first sign of discomfort. Most doc- In the early years following his in- Ruben began discussing the possibility tors, and just about all clinical studies, jury, like most paras, when he noticed of low-dose prophylaxis for prevention. warn against this approach. any symptoms he would immediately Didn’t the possibility of developing a “The two main rules,” says Ruben, be put on antibiotics. “Now that I have

Traveling with Personal Assistive Equipment?

Scootaround’s Disability Number Assistance program allows you to store your personal assistive equipment information (your “DNA”) on our secure database.

Should you encounter diﬃculties while traveling with your equipment, simply call and provide us your DNA number. No matter which airline you ﬂy with, Scootaround can help.

For more information, call 1-888-441-7575 or visit www.scootaround.com/loyalty-programs/scootaround-dna

SEPTEMBER 2015 15 decades of experience,” he says, “I his having learned how to take better care edema, and the doctor wanted to up think maybe I didn’t need them at all. of himself as he has gotten older. the dosage, but I thought Macrodantin Most of my symptoms could be ex- A 2014 study on nitrofurantoin could be the problem,” says Smith. “He plained by my being dehydrated. Nine claims that it is a good choice for low- ignored me and increased the dosage, out of 10 times, that is the problem.” dose daily use, partly because bacterial and the swelling in my lungs got worse At that time, Septra or Bactrim — resistance to it has remained “virtually and it was harder to breathe. I stopped sulfamethoxazole/trimethoprim — was unchanged since its discovery.” Side ef- taking it and the doctor threw a fit. But the drug of choice for SCI and UTIs. fects, compared to other antibiotics used the next day the swelling went down. I Stampfli took it a number of times and to treat UTIs, are minimal. However, the am actually allergic to Macrodantin.” it worked well, but then something possibility of pulmonary problems such Smith now manages his bladder by strange happened. “I started getting a as shortness of breath in a small number trying to avoid antibiotics altogether. “I still T h e S a f e , P r aweird c t i c a l reaction on my hands, splitting of users indicates the need for close take Mandelamine (methenamine) and a n d C o n ve n i e nand t w a cracking y t o skin, losing skin. Turns out monitoring. “When I first went into vitamin C,” he says. Methenamine is an an- t r a ve l wh e r e ve r a n d wh e n e ve r yo u wit a nwas t . Stevens-Johnson syndrome,” he Kaiser, a doctor insisted on lung stud- tiseptic for the bladder but not an antibiotic, says. Whenever he went off Septra, the ies,” says Stampfli. “But I haven’t had any and should not be taken with Ciprofloxacin N o m o r e wo r r i e s a b o u t h a vi n g a c c e s si b l e reaction would stop, and when he went problems with taking it.” He says he has or Bactrim without first checking with a fa c i l i t i e s. back on it, it would start again. been taking it for 30 years and doesn’t doctor. Smith takes 500 mg. daily of Man- have any plans to stop taking it.  About this time he started taking ni- delamine with plenty of water. “I just know Different models totrofurantoin meet — Macrodantin or Macrobid that on me it works really well.”  specific needs! Simple to assemble;— no for low-dose daily prophylactic use, 100 Every Body’s Different Joan Anglin is a 76-year-old C4 quad,  tools required. mg. per day. “I got the original prescrip- John Smith, Jr. had a completely dif- injured 25 years ago, who lives an ac-  Safe and easy to use. tion from an older doctor, but all other ferent experience with Macrodantin. tive lifestyle, spending as much time as Seat and footrest heightsdoctors have gone along with it,” he says. possible in her greenhouse, where she  are adjustable. Apparently he was one of that “small Casters have “total-lock” “Infections have definitely“GO-ANYWHERE” gone down. I number” who can Chairs have an adverse reac- produces thousands of seedlings. She has  brakes. may get one occasionally, but not severe. tion. Smith, 59, a C5 quad, was taking a been taking a daily low dose of Bactrim Lightweight and durable, high-quality aircraft-grade The incidence of infections is way lower low dose of one pill daily, like Stampfli. for almost six years with no problems  aluminum. than it used to be.” He does add, however, “After four months, I developed a raging — unlike Stampfli’s experience. “This Compact, convenient, and that this may be partially explainable by infection with a side effect of pulmonary last February was my first UTI in almost  PORTABLE! Won’t Rust or corrode;  easy to clean. Virtually maintenance- For Home AND On-The-Road  free. Cushions are available in (3) colors and remove VA contract  easily for cleaning. Optional accessories V797D-30180 include: wheeled custom travel bag, positioning belts, slide-out commode tray, 2-way adjustableThe Safe, Practical and Convenient way to GO-ANYWHERE Chairs headrest, and upgradedtravel wherever and cushions! whenever you want. “When Ya Gotta Go, We Go With Ya!” No more worries about having accessible facilities. “GO-ANYWHERE” Chairs www.goesanywhere.com DifferentFor modelshome to AND meet on-the-road; [email protected] When ya Gotta Go, We 800-359-4021 Go With Ya!” • Safe, Practical, Convenient, specific needs!  Simple to assemble; no Portable tools required.  Safe and easy to use. • Won’t rust, easy to clean.  Seat and footrest heights are adjustable.  Casters have “total-lock” • Simple to brakes. assemble;  Lightweight and durable, Come See high-quality aircraft-grade no tools Our New aluminum.  Compact, convenient, and required. PORTABLE! Ultralight  Won’t Rust or corrode; Different models • Numerous easy to clean. “Sport”  Virtually maintenance- to meet optional free. Model!  Cushions are available in specific needs! accessories (3) colors and remove easily for cleaning.  Optional accessories include: wheeled custom travel bag, positioning www.GoesAnywhere.com | [email protected] | 800-359-4021 belts, slide-out commode tray, 2-way adjustable For home AND on-the-road; When ya Gotta Go, We Go With Ya!” headrest, and16 upgraded NEW MOBILITY cushions! www.goesanywhere.com [email protected] 800-359-4021

Custom wheeled travel case “For home AND on-the-road; When ya Gotta Go, It'll Go With Ya!" available. three years,” she says. “Bactrim seems to Studies of Interest be helpful. When I went off of it for a year, it got much worse.” She says she doesn’t Cellulitis: “Antimicrobial Prophylaxis of Urinary Tract Infection for Patients understand how it works, but it does. “My in Adults,” Mayo Clinic Proceedings, with Neurogenic Bladder,” University of doctor says using Bactrim like this doesn’t July 2011; www.ncbi.nlm.nih.gov/pmc/ Michigan, Current Bladder Dysfunction make sense, but he does it with one other articles/PMC3127564/. Reports, December 2014; link.springer. quad, and it’s working with both of us, so com/article/10.1007%2Fs11884-014- he wants to keep using it.” Nitrofurantoin: “Role of Old Antibiot- 0257-4#page-1 Clearly, no doctor has a crystal ball ics in the Era of Antibiotic Resistance,” • “Urinary Tract Infections in Spinal that produces a one-size-fits-all treat- February 2014; www.mdpi.com/journal/ Cord Injury,” Harvard Medical School, ment for everyone. antibiotics. 2014; emedicine.medscape.com/ Urinary Tract Infections: “Prevention article/2040171-overview What Can We Conclude? Jerome Stenehjem, M.D., physiatrist and medical director of SHARP Alison deRose Rehabilitation Center, thinks long-term antibiotic therapy for UTI prevention in SCI is where the art of Eliminate leg bag hassles medicine intersects with science. “In theory,” he says, “long term use of a with the touch of a button. drug like nitrofurantoin, or any other antibiotic, to prevent UTIs should not work due to development of resistant The only leg bag that empties itself ... organisms. However, empirically, and inexplicably, it often does work.” Where and tells you when it’s time. recurrent UTIs are a vexing problem, • Unique integrated level sensor and pump he thinks it may be “worth a try” for • More control and independence the patient and the treating doctor, with • No more leaks or backﬂ ows close monitoring. • Reduces UTI risk by encouraging He has also learned another preven- proper hydration1,2 tion technique that he is eager to share. • Simple to use and discreet “I have had great success with bladder irrigation. Once a day, after draining the bladder, a 30 ml. solution of gentamycin NEW! is infused and left in the bladder. This For self payers and Medicare has the advantage of having no systemic covered* effect but good efficacy in the bladder.” In interviewing medical experts To learn more or ﬁ nd a dealer, and numerous people who have experi- visit www.MelioLegBag.com ence with daily low-dose prophylactic use of antibiotics, some of whom are *Subject to co-pay and deductable requirements. not included in this article, two strong 1. National Institute for Health and Clinical Excellence (2012) Prevention and control of healthcare-associated infections in primary and community care. themes emerged. First, whether treating 2. Hooton, T.M. et al. (2010) Diagnosis, Prevention, and Treatment of Catheter-Associated Urinary Tract Infection in Adults: 2009 International Clinical Practice Guidelines from the Infectious Diseases Society of America Clinical cellulitis or UTIs, we all have unique Infectious Diseases 50 625 – 663. reactions to antibiotics — what works for one person does not necessarily work for another. Second, antibiotics can be harmful as well as beneficial. The lesson is clear: Be certain to find a doctor who knows your medical history well, is familiar with your disability, and keeps up with the latest studies on antibiotic use. The decision to start a prophylactic regimen of daily low-dose antibiotics should not be made without carefully Find a Dealer at www.MelioLegBag.com weighing risks versus benefits for your Melio is a trademark of Albert Medical Systems ©2014 Albert Medical Devices E1012 Rev B 07/15 unique situation. And close monitoring of potential side effects is also a given.

SEPTEMBER 2015 17 When it comes to safety, we’ve turned the mobility world upside down. We built the MV-1 with all of the features wheelchair users need, and we focused • Factory built for universal on safety at every turn. We like to say we started with a ramp and created the wheelchair access entire vehicle around it for safe and easy wheelchair access. And because you’ll spend most of your time driving or riding in your vehicle, we designed the MV-1 • Safest wheelchair accessible to have exceptional handling and plenty of ground clearance for the everyday vehicle on the road* obstacles you’ll encounter. Right off the assembly line, the MV-1 is accessible, durable, robust and reliable. It’s the one vehicle for you, protecting you and your • Durable performance with family even as it gives you easy access to the world around you. high ground clearance

* Based on NHTSA safety recall data

2016 MODELS See them at mv-1.us

NewMobility-MV1-KidAd.indd 1 7/31/15 11:04 AM NOSE FOR AHOSPITALITY Photo by Lauren Mowery

BY IAN RUDER

hen Yannick Benjamin felt that there was no reason for me — or get back to becoming a sommelier. A Googled “wheelchair som- anyone with a disability for that matter steady morphine drip didn’t keep him W melier” in the wake of the — not to pursue their passion and work from drawing restaurant layouts while 2003 car accident that left him para- in the field they choose.” recovering from his spinal fusion in lyzed, the results were not heartening. That attitude, coupled with the drive the ICU, and once he started rehab at The returns told of a French sommelier that had helped him rise so quickly Mount Sinai he surrounded himself with a crushed hand, but there didn’t before his accident, set Benjamin on with books about wine. “They would appear to be any wheelchair users who a long and difficult, but ultimately take me away from those few moments were serving wine at the highest level. rewarding, path toward achieving his when I wasn’t in the best mental state,” Before the accident, Benjamin, then 25, dreams. During that journey he dis- he says. “They meant so much to me at was working at the Ritz-Carlton and covered a new passion, helping others that time because I was reading about well on his way to becoming one of with spinal cord injuries, and used his places — about vineyards in Portugal, New York’s top sommeliers. The career hospitality and wine experience to co- vineyards in southern Spain, the signifi- perfectly blended Benjamin’s passions found Wheeling Forward and launch cant wine regions located in Germany for wine and people; as a sommelier he the highly successful Wine on Wheels and in France — and I remember think- could bring people together through fundraisers for SCI. He also found his ing about them and imagining being wine. Becoming a sommelier was a goal future wife and helped make sure that there.” he had worked toward for years. Now any aspiring sommeliers who Google When his therapists asked what his he was a T6 paraplegic aspiring to a field “wheelchair sommelier” in the future future work plans were, he told them where no paraplegic had gone before. will find a plethora of articles and he still planned to be a sommelier and “I thought, oh my God, what am I information. tasked them with helping him figure supposed to do now, get a desk job or * * * out how to carry bottles and glasses on just go back to school and become a After his injury, Benjamin wasted his lap without spilling, dropping or lawyer?” recalls Benjamin. “But I really little time before plotting how he would breaking them. “It wasn’t an overnight

SEPTEMBER 2015 19 success,” says Benjamin. “I think my is always restaurants,” he says. “One passion outweighed the failure. It of the things I love about wine is came to where I no longer dreaded how it gets people together and how failure. Instead I embraced failure it gets people to talk about different because I felt that every time I failed, subjects. It’s a very intimate thing. I I was good at taking it, breaking it always loved that fact. I always love down, and learning from it — and it being around people, and I always only made me a better person.” (See love hearing other people’s stories.” sidebar on his custom tray, page 22.) At 19 he was working at Le Cirque, Alex Elegudin, a C6 quad, one of New York’s most esteemed befriended Benjamin during their restaurants. Before he could even stays at Mount Sinai and says it legally drink wine, he was enrolled was always clear he would find a in wine classes. “I knew pretty much way. “His passion for wine and the from when I was in high school that industry was so strong,” he says. I was going to make hospitality my “Yannick’s not the kind of guy that career,” he says. could have a desk job. He needs to Fellow sommelier and friend be out there on the floor, working Pascaline Lepeltier says Benjamin’s with people. It’s his calling.” personality is ideally suited for the Benjamin makes Benjamin grew up in Hell’s field. “He really cares about people,” time for handcy- Kitchen watching family and friends she says. “He is a genuine hospital- cling every day, work in the restaurant industry and ity person. He’s really, really good often waking focused on a career in the industry at paying attention to the people at the crack of dawn. “If I don’t at an early age. Both his parents around him and trying to make work out, I get were French, and his mom was an them happy.” very grouchy,” excellent cook. “Once a month we all Those qualities could have made

Photo courtesy of Wheeling Forward he says. have the family over and everyone’s Benjamin an excellent food server, together — of course the main topic chef, or restaurant or bar owner —

20 NEW MOBILITY something he still aspires to — but it is out and he says, ‘Uh, Yannick Ben- hire someone in my situation,” he says. “I his passion for wine that defines him. jamin?’ and I say, ‘Yeah.’ He started know a lot of people who say hiring me “He loves wine for the right reasons, laughing nonstop and was incredibly is not a big deal, that’s what employers not for the label or for the fame, just nervous — it wasn’t like he was laugh- are supposed to do. But I tell them, no, 99 because he realizes sharing wine should ing hysterically at me — and he was percent of the people I interviewed with be simple and for everybody. He has this just like, ‘Are you OK?’ I said, ‘Yes.’ or tried to work for did not want to hire amazing quality of being super knowl- He asked what happened, and I said, me. It’s a pretty big deal.” edgeable and an excellent taster, but he’s ‘What do you mean, what happened?’ Looking back, the arduous process of never arrogant,” says Lepeltier. He said, ‘Wait, did you get into some finding a job was not without benefits. “Going in, I didn’t know if people were * * * kind of ski accident?’ And he just kept going to take me seriously or if they were Even with the ideal makeup, training laughing and laughing … I had given going to be shocked,” says Benjamin. and passion, Benjamin knew finding up at that point. Rejection is one thing, “But one thing that I have learned about work as a sommelier would not be easy. but humiliation is another.” being in a wheelchair is that if you come He anticipated the difficulty of finding a Luckily, it wasn’t in Benjamin’s char- across as confident and comfortable with venue with enough space for him to ef- acter to give up. He eventually found who you are, then I don’t think people fectively roll around and serve in notori- work at Le Du’s Wines in 2006 and then are ever going to really notice.” ously cramped New York, but he didn’t at the esteemed University Club in 2012. foresee some of the other obstacles that With one of the biggest cellars of any * * * awaited him. He applied all over New private club in America and a spacious Another unexpected positive out- York and ended up with “75 to 100” floorplan, the Club has proved a perfect come of Benjamin’s injury has been the interviews. The employers’ responses place for Benjamin to work on his craft. creation of Wheeling Forward, a New ran the gamut from not knowing how to He appreciates the way the Club has York-based disability advocacy group deal with a sommelier in a wheelchair, worked to accommodate him and of Benjamin and Elegudin founded in 2011. to enthusiastic but logistically unable course, the fact that it hired him. The two were injured about a week apart to hire him. Despite receiving much “Most people think it’s really great and quickly became friends during rehab encouragement, one interview nearly that a wheelchair user like me is working at Mount Sinai as they worked through made him give up. and pursuing my passion, and they’re the many issues that arise post-SCI. “The owner of the restaurant comes always impressed that the club would “In rehab I remember how we

SEPTEMBER 2015 21 always had friends and family come to heavy on the development side and mak- year. She remembers him being taken visit, and many other people there with ing sure that fundraising and partner- aback when she asked why he returned us didn’t have any friends or family. ships are coming in. He loves that role, to the wine industry after his injury on We realized how lucky we were that we and is a natural in bringing attention and one of their early dates. “There was no had help to keep our morale up,” says social media to the organization. And other option,” he told her. Now that she Benjamin. I’m very heavy on the programming side, has gotten to know him and adapted The two remained close friends over putting all the programs into place, run- to his religious early morning exercise the next few years as they got their lives ning them and spending the funds.” routines and heard the stories of how he back together. Benjamin went to wine One of Benjamin’s biggest contribu- would wake up at the crack of dawn as school, Elegudin went back to college tions has been an annual fundraiser a kid to go play hockey two hours away, and then law school and got involved called Wine on Wheels. Benjamin she understands. in volunteering. envisioned the event as an intersection “His drive is beautiful,” she says. “We got to a place where we had been of his two worlds — wine and Wheel- “Every day he is out the door, going. He there for each other over all those years, ing Forward — that would bring both just works really hard to make sure he supporting each other, and you know, communities together by enjoying one gets done what he commits to and what our friendship grew,” says Elegudin. of his passions to support the other. The matters to him. It reminds me every day to push a little harder.” His friends say that willingness to go On top of all the normal rehab the extra mile is one of the qualities that tasks, Yannick Benjamin had to defines Benjamin. “He’s always there figure out how to carry expensive when you need him,” says Elegudin. “I wines and glassware to would-be know I can rely on him for anything,” customers. “One of the biggest adds Lepeltier. challenges we have as wheelchair That drive and his innate ability to users is to be able to tend to stuff put people at ease are behind much of on our lap while we’re pushing his success to date, and will likely help our chair,” says Benjamin. “So if I him accomplish even more, according have a normal tray on my lap with glasses on it, they don’t move. But to those around him. Elegudin shared a as I start pushing, everything flies story from the first Wine on Wheels that off. I needed something I could illustrates Benjamin’s approach. just put the glasses in without “The morning of the event while them moving, and through trial we’re setting up, he decides to break out and error I was able to develop a an impromptu dance contest — right in tray with a carpenter. The eventual the middle of the venue, like two hours model, built by Jean-Paul Vio- before we’re about to start. And all the llet, has specific slots for bottles, glasses and a decanter. volunteers and all the people who get there early just have this dance contest, and we give away a bottle of wine. He’s just really easygoing. It’s his thing.” “And then one day we just said, ‘Hey, we results have been an unabashed success. Benjamin is excited about expanding can help others who weren’t as fortunate The first Wine on Wheels in February Wine on Wheels beyond New York and as we were, and we want to do it.’” 2012 raised around $20,000. The 2015 continuing to grow Wheeling Forward. They launched Wheeling Forward event, held May 2, has already grossed His dream of owning and running a in December 2011 and have watched it over $125,000. Cheers-like establishment remains grow since. The organization now offers a “It’s such a cool event,” says fellow alive, but for now he is focusing on his variety of programs to help New Yorkers, sommelier Heidi Turzyn. “New York upcoming nuptials and simply being the including adaptive sports, fitness, nursing City is so big and so competitive, and best sommelier he can be. To that end, home transitions, social events, scholar- there are so many somms, and Wine on he continues to study for the Court of ships and more. Benjamin and Elegudin Wheels just stops everything and brings Master Sommeliers exam and a chance continue to work to raise the organiza- them all together for a great cause.” to earn the title Master Sommelier. tion’s profile and expand its reach. Turzyn met Benjamin two-and-a-half There are only 147 Master Sommeliers “We really complement each other years ago at another wine event, and the in the world, and he would be the first well,” says Elegudin. “Yannick is very two are now engaged to be married next paraplegic one.

22 NEW MOBILITY J U S T B E ANDY O YOU’RE U R ONE S E OF L US. F

If you’re ready to join a team that’s all about breaking down barriers and building careers, look no further than Lowe’s. We celebrate the diverse backgrounds and abilities of each employee, and it’s those differences that help grow our

business every day. Apply today at Lowes.com/Careers.

Lowe’s is an equal opportunity employer committed to diversity and inclusion. ©2015 Lowe’s. LOWE’S, Gable Mansard Design, and Never Stop Improving are registered trademarks of LF, LLC. For me, painting is about having a conversation. the same as everyone else. Expressing myself through art was always easy, These simple things make a but expressing myself in person has been more huge difference, and I’m happy to say my life at eye challenging since my mobility changed. With level is much more fulfilling. iLevel, I can speak to others without feeling self- conscious, and I can be seen, heard, and treated Artist

Learn more at www.ilevel.rehab • (US) 866-800-2002 • (Canada) 888-570-1113

#ilevelsmile /quantumrehab @quantum_rehab TO THE MOTHER WHO ABORTED HER BABY WHO HAD SPINA BIFIDA — LIKE ME

Laurita Tellado is a 28-year- old woman who has spina bifida and blogs about her fantastic life, work she enjoys and a community she loves. When she was contacted by a woman who aborted her fetus because it had spina bifida, her first reaction was shock, then outrage, then sadness … and finally, remarkably, grace.

ecently I received an email from a mom who contacted I was accused of not being a good advocate because a good me for advice. She was pregnant, her fetus had spina advocate “doesn’t think of her own feelings.” How is it even bifida, and at the recommendation of her doctor, she possible to do that? I could never put my own feelings aside, chose to abort. In addition, she wanted my advice on for it was my own feelings that helped me become an advocate Rhow not to have another baby with spina bifida. Having spina for the spina bifida community. It is my emotions that fuel my bifida myself, I felt the entire gamut of negative emotions upon passion for activism and education. I could never turn off my opening and reading that email — anger, sadness, judgment emotions. That is just absurd. toward her and an overall sense of melancholy that pervaded However, I also was not prepared for the outpouring of my mood for several days. love, support and encouragement from many friends and fol- In an attempt to sort out my thoughts, I took to lowers who applauded my blog entry. They felt it was a the only place I felt I could safely share my good tribute to how so many parents of kids with heart — my blog, Holdin’ Out for a Hero, spina bifida — and adults with SB, especially where I published a letter to the mother — feel when they come across stories like that I did not send. these. I will be forever grateful for these The backlash to this entry was people, for they buoyed my spirits up almost immediate. Although I am during one of the most challenging still very much on the fence in the situations I’ve encountered in my abortion debate, I expected there five-plus years of blogging. would be pro-choice advocates So, without further ado, follow- who would argue that she acted on ing is my first letter to her, the one I her rights. What I didn’t expect was posted on my blog but did not send. the anger and vitriol that spewed, And then what I actually sent to her even from moms of children with follows after. spina bifida who know me personally. And it was all from the heart.

By Laurita Tellado

SEPTEMBER 2015 25

FROM THE DESK OF LAURITA TELLADO Mami when she was about eight months pregnant with me Mami and me

Dear Woman, First off, let me say I am not writing this on an impulse. In fact, I have given this a lot of thought and have decided to - give this situation a “grace period” in which I could cool off, reflect, cry, pray, gain perspective from others in your situ ation, and allow myself enough time in which to answer you without anger or bitterness. Of course, this time has allowed me to be more merciful and fair to you. But please know I needed this time as much as you did. It’s not easy for me to process my emotions about an issue that is so personal to me. But you emailed me asking for advice and answers. After choosing to terminate your pregnancy of a child with spina bifida, you want my advice, my insight, my wisdom, on how to have a “healthy” baby. How’s this? I have nothing to offer you. No advice, no answers, no wisdom, no tips, no magic crystal ball to predict what your next child will be like. hate you. After all, you managed to break down wall after wall of My first instinct, upon reading your email was to cautious, precarious illusion of self-esteem that I have spent 28 years painstakingly building. And for 28 years, it has worked for me. When I first began blogging, I was moved by the many moms who contacted me. Most have had children with spina bifida, and some were pregnant with a baby with spina bifida and wanted advice on how to handle the birth of a child with my disability. Or maybe they wanted solidarity, just to know someone else out there in cyberspace can relate. I was elated at the idea of being able to help these women, to give them a glimmer of hope for what the future held for their children. I offered them my friendship and unconditional support. In return, I have been rewarded many times over by their reciprocity, their encouragement in my difficult times, and their genuine happiness at my triumphs. Then I opened your email. It’s as if the fortresses of support and encouragement from these moms and little white lies I told myself quickly eroded around me. I was exposed. Vulnerable. You shattered my illusion of invincibility. I built a community of support and encouragement, of sharing knowledge about the good, the bad and the ugly of spina bifida. Women all over the world thank me for simply sharing my story, trivial as it may seem to many, because the story of my normal yet fulfilling life gives them hope. It helps them to know their children can aspire to this. And yet I cannot help you, because you aborted your baby. You cut the common thread we would have shared. Now all I see is a dark chasm between us, because I am nothing like you. No, I am that child with spina bifida, the one you chose to abort. I look in the mirror and I see the life that was discarded because it wasn’t deemed worthy of living. - You ask me for advice because you don’t want your next baby to turn out like me, and I am angry beyond words. Be cause in spite of all I have accomplished in my life, no one wants to have a child like me. Not even my own mother would have wanted that. But she bore me. And that is what frightens me the most — that maybe, just maybe, your story and my mother’s are not all that different. You each won the lottery no one wants to win. I wish you well … and maybe next time, take a second glance at your lottery ticket. After a few days of mulling it over, I decided to finally reply to this woman with a clear head and lighter heart. This is the letter I actually sent: Dear Woman, Thank you so much for contacting me. I can’t imagine how difficult it must be to contact someone with spina bifida after losing a baby with spina bifida. First, let me say I am very saddened for your loss. However you lose a baby, it is heartbreaking and it must be so difficult. I admit, upon first reading your email, I was quick to judge you. I felt angry that you did not want to have a baby with the condition that I have, as if having spina bifida means my life is not worth living. This is why I did not answer you immediately. After much thought, crying and praying, I have come to realize there are many like you who do not have the information they need to make this decision. I know for a fact that many doctors put pressure on mothers to have an abortion when spina bifida is diagnosed. I have lived with spina bifida my whole life, but I have never been a mother, so of course my advice is based on what I know from having spina bifida myself. Let me start by saying there is no way to guarantee you won’t have another child with spina bifida. Nobody can promise you that. Sadly, there has not been much research or information about spina bifida until recently. Honestly, the only way to guarantee you won’t have a baby with any disorder or disease is to not get pregnant. A B vitamin called folic acid has been shown to help prevent a child from having spina bifida, but even if you take it as recommended by a doctor, it only works about 70 percent of the time. So that is not going to promise you a baby without spina bifida. Here is a link to some information about folic acid published by the March of Dimes, a won derful organization that helps prevent birth defects and support families of children affected by birth defects: www. marchofdimes.org/pregnancy/folic-acid.aspx - Because you seem very determined to not have a baby with spina bifida, the best piece of advice I can offer you is this: If by chance you do end up becoming pregnant with another baby with spina bifida, please know that it is death sentence, or a tragedy. not a I have met many, many families who have children born like me, with spina bifida, who, like me, grow up to be happy, successful, even healthy adults. Yes, they sometimes go through many surgeries or other medical complica tions, but most of us grow up happy and make friends, and as adults, get jobs, go to school, even get married and have our own families. I have played with many children with spina bifida, and they are absolutely beautiful and precious, - and very smart and active. It is possible to have spina bifida and live a happy, healthy life. I work as a blogger, writer, and social media professional, and I am often invited to speak at events and conferences around the United States. I have connected with adults with spina bifida and their families all over the world who reach out to me for advice or simply to know someone else understands. I do not mean to say I never get sick or feel pain, because I do. I have had 19 surgeries and many, many hospital visits. My family has been through a lot, and it is not easy. Pain is a part of life, and even “healthy” children will get sick, hurt, and suffer at some point. All parents feel their job is to take away their child’s pain, but like my parents have done with me, their job is to stand by her, to hold her hand when she is having a hard time. My parents are my best friends and love me so much. So please don’t think having spina bifida means I have a horrible life. Thank God, I live a wonderful life and I feel grateful for every minute of it. I hope this serves to encourage you, no matter what doctors say, no matter what others say to you, to be the best mom you can be for your child, whether he or she has spina bifida or not. That’s all you can really do. May God bless you and please contact me if you want to talk some more. I am here.

Laurita A DAY IN THE LIFE of Four Wheelers

Alex Ghenis, Paula Larson, Ian Jaquiss and Ellen Stohl are four very different people with disabilities with one similarity in common: Each agreed to share a day of their lives, taking us on a tour of what do they do, where they go, how they adapt, and the tools and products they use to make it all work.

28 NEW MOBILITY MOST WEDNESDAYS BY ALEX GHENIS

ost of my Wednesdays start at 6 — but only three times a week in consid- a.m., and today is no different. eration for the California drought — then My personal attendant, Jim, who get dressed and in my power chair. Some MI’ve been working with for a couple years podcasts on my bedroom speakers make now, comes into my room after a quick that part of the routine go by faster and drive from home. I have a suprapubic cath- seem less like a chore, so I start my day out eter, and we’ll be switching from a bedside feeling fresh. Today we’re listening to Stuff bag to a leg bag later. But for now, Jim gives You Should Know’s podcast on clowns, and me an extra minute’s rest by quietly rins- Jim shudders as he tells me about his 6th ing out the leg bag before we do stretches. birthday party. I’ll spare you the details, but When he’s done, we stretch my arms and it’s a hell of a story. Trust me. legs and then change out the bags before Breakfast is pretty straightforward, and Jim brings over my shower chair. Right the only disability trick I have is coffee- after my accident I would have moved over related. As a C5 quad with no fine-motor using my Hoyer lift, but I switched to pivot transfers about 10 years ago and haven’t turned back. To do the pivot, Jim locks my shins between his thighs, grabs under my shoulders, and then shifts his weight back to lift my butt off the bed and swing me over to the shower chair. He’s only 5 feet 6 inches, but it works like a charm. Morning routines are interesting. It’s two hours from the time Jim arrives until I’m up in my chair, which is why I’m waking up at 6 a.m. just to get to work on time. I can’t avoid the routines, so I do everything possible to make the most of my time — just like my half-hour routine at night, Alex was nervous about losing his benefits when he started back to work, but now that he has fig- where I watch the Daily Show and laugh ured out the regulations, he loves his job. myself to sleep. It’s a minute later and Jim has rolled me dexterity, I use tenodesis to grab things into the bathroom. I do a bowel program — this means I flex my wrist and use the every day using a combo of two supposito- natural motion that results to pinch and ries: Magic Bullet and CEO-TWO, which hold things. It turns out beer steins have is the most effective setup I’ve found so the perfect type of handles for holding a hot far. Even with the good combo plus digital cup without burning my hand, and luckily stimulation to wrap things up, it can take a the Dollar Tree has huge ones. As I nurse while, so I browse the Internet on my laptop some piping java out of my 25-ounce stein, in the meantime. We’ve figured out a setup I thank Oski (the Cal Berkeley mascot, my with folded towels and a plastic tray that main deity) for caffeine and know I’ll be helps the laptop stay stable on my lap, and productive once I get to work. Dragon NaturallySpeaking makes it so that My job at the World Institute on Dis- I can type if I need to. My go-to morn- ability is a half-mile from my front door ing websites once I’m set up are some Cal here in Berkeley, and going full-speed down Berkeley sports blogs, climate change news, side streets gets me there in under 10 min- and trusty old Facebook. So if you see me utes. It’s amazing to have work this close. I post something at 6:30 a.m., you’ll know don’t have a rampvan and instead use the what I’m doing. Bay Area’s solid transit system, but rolling

Photos by Eric Stampfli Eric by Photos After things wrap up, I take a shower straight to work is the easiest thing possible.

SEPTEMBER 2015 29 (Left) After a long day at work, Alex loves unwinding with friends in his Berkeley apartment. (Below) Alex’s office at the World Institute on Disability is set up to make it easy for him to work independently.

room where he helps me put on my workout shirt, a raggedy ALEX GHENIS, 27, C5 QUAD screen-print tee a kid made for me when I was a camp coun- Turf: Berkeley, Calif. selor in 2007. As I head out of the locker room, I remember Employment: Policy Specialist, World Institute on Disability when I started doing cardio at the gym a few years ago and Staying employed: Disability Benefits 101, www.db101.org realized there weren’t any good options for doing weights. His ride: Invacare TDX-SP with tilt-recline seating Some research brought me across the UPPERTONE, which is Hobbies: UC Berkeley sports and saving the earth built for folks with SCI, so I decided to talk with management Staying buff:The Uppertone at UC Berkeley’s Rec Sports Facility and started a petition to get one in the RSF and it ended up a Pro tip: Use both Magic Bullet and CEO-TWO suppositories success. A lot of times it’s easy to just be frustrated when there aren’t any accessible options, but it’s better to channel that frustration into action. That’s what happened with the UPPER- I arrive at the office at 9 a.m. and my coworker Kat is sitting at TONE, and today I’m able to build up some muscle because of the desk right next to mine, same as usual. She does assorted it — and so are a few other folks that use it on the regular. projects and manages some human resources work, and she’s I’m done with the gym an hour or so later and head out. also one of the designated staff for handling reasonable accom- Some evenings I’ll go to an event around town, like the weekly modations, like when I need help microwaving lunch later. We poetry slam at the Starry Plough pub by my house. After all, say hello and crack a few jokes, then she unpacks my backpack it’s nice to stay social and keep life fun. But today’s been a and throws my laptop on my thighs. longer one, so off to home I go. My roommate, who also helps I was once nervous about working because I thought I with dinner and cleaning and throwing me into bed, is hang- might lose my Medi-Cal and In-Home Supportive Services, ing in the living room playing with her cat when I arrive. “Are which pays for my personal attendants. If those disappeared, you ready for some food?” she asks. “Of course!” I reply, so my earnings wouldn’t come close to keeping my head above we throw together a salad and I munch away while watching water. But after chatting with some friends and new coworkers, SportsCenter — they’re talking about Cal Berkeley’s basketball I realized that working is completely possible if I know how to win earlier today, so life is good. navigate the regulations — check out www.db101.org for tips By the end of dinner, I’m yawning, so we switch straight on that. So when I started working I signed up for California’s from food to the night routine. Getting into bed takes a half 250 percent Medi-Cal working disabled program and was able hour, a perfect amount of time for the Daily Show on my to keep both. Now, I work on a ton of policy issues — my main bedroom television. The yawns get bigger as I start to sink schtick is actually how climate change will hit people with dis- into my comfy memory foam mattress. The foam makes it so abilities — and it’s fulfilling to be doing something good with I don’t get pressure sores while I sleep, and the full-size is big my time. It still doesn’t hurt that the day’s going by quickly, enough for someone to stay the night, as opposed to my air and I’m not complaining when the clock hits 5 p.m. before I mattress from the few years after my injury. Tonight is a solo even realize it. one — womp womp — but I’ll be crashing out so quickly it After work is a great time to hit the gym, and by 5:30 I’m in wouldn’t make a difference. My roommate says good night as the lobby of UC Berkeley’s Recreational Sports Facility, ready she closes the door, and I fall asleep, recharging for another to work out. An old friend meets me and we head to the locker full day tomorrow.

30 NEW MOBILITY AN UTTERLY UNPREDICTABLE DAY

BY PAULA LARSON

nce upon a time, a day in my life would have been ut- call from the bank. I hung up the phone, answered the text and terly predictable. called the bank back. I wrestled with the bank for 20 minutes, I would lose an early morning fight with the hung up and then got another call from my boss. We talked Oalarm, wake up later than I should — man, I hated morn- about work stuff for a while as I found my second shoe again ings — stumble out of bed and rush to work. I would work at (seriously, did it wander off on tiny feet of its own?) and finally least eight hours at my place of employment five days a week, wrestled it on my foot. 52 weeks out of the year, except for the way-too-rare vaca- Finally, both shoes on, I tossed my crutches aside, hopped tion. I knew where I was going every weekday, what I’d be in my wheelchair and rushed from my living room to my other doing and how much I’d be getting paid. And I knew that I office — my kitchen table. would be getting paid. This is my new, unpredictable life as a freelancer. I’m a That was then, this is now. freelance writer and freelance compliance reviewer, and I This is what I did this morning. work part-time and sporadically for our parks and recreation I lost an early morning fight with the alarm because I had to department. In between that I apply for other jobs that would get up to take my wife to get her truck fixed. Since I have spina theoretically pay me regularly. Oh, and I am a community col- bifida and adult onset tethered cord, my arms and legs spasm, so I slowly stretched them before grabbing my crutches. Then I umnist for our local paper this year — that’s the gig that puts stood up while stretching my high tone right ankle back to its the “free” in “freelancer.” rightful place. Ahhh … it’s good to get everything rolling. Far from my former 9-to-5 job, my working life now is com- I crutched the six feet or so to my royal morning seat on the toilet where I did my first of the day cath and teeth brushing PAULA LARSON, 49, SPINA BIFIDA — even I, the queen of morning grogginess, don’t mix those two up. I imagine it would be stunning if I added up all the Turf: Tacoma, Wash. time I spend sitting on that toilet every day. I threw my sweats Employment: Freelancing. Lots and lots of freelancing. and a hat on and put on my two ankle-foot orthoses. These are Cath: Coloplast 6-inch straight tip for the ladies plastic toe to knee custom braces that hold my ankles and feet Her ride: TiLite Aero Z and Walk Easy crutches Hobbies: Bird-watching and sled hockey in position all day. In what seems like another life, I was once Pro tip: To fit AFOs in your shoes, get diabetic, extra-depth shoes an orthotist and I made the left brace. But I haven’t been able to a half-size larger and one width wider than your usual size. do that work for a few years now. I crutched it to the car and took Julie to work after dropping the truck off, then headed back home to take my first meds of the day. Gabapentin — it’s what’s for breakfast! I feel like I’m more productive if I get out of my sweats and into real clothes. OK, I’m talking my idea of real clothes, so a T- shirt and jeans — I call it “Paula business extra casual.” Others call it slovenly. Whatever. So I took a shower, got dressed and started the long commute to my office — in my living room. That’s right, someone’s a freelancer! Yes, instead of my former predictable full-time jobs, I now work several part-time gigs to bring home the bacon — well, soy bacon in my case. The pay’s low, the security is non-exis- tent, but the commute is the best. So this morning I got dressed, got one shoe on and had just found the other when the phone rang. One of my bosses tells me there are two more cases for me that have fallen through the cracks that need to be processed ASAP. I hung up from her, found my second shoe again after it somehow got lost during a single phone call, and the phone rang again. It was the pain clinic about my appointment. Working from home as a freelancer has its benefits for Paula Larson, includ- While on the line with them I got a text from Julie and a phone ing being able to move her “office” to take advantage of a sunny afternoon.

SEPTEMBER 2015 31 Freelancer by While waiting for the second long-lost job to day, sled hockey warrior by night. arrive in my email, I did background research Paula Larson on a job I am applying for. It’s a different type makes sure to get of job than the ones I had when I was more her exercise in physically able, as are all the jobs I have applied every day. for recently, so I have to make my resume sound like I have an idea that I know what I’m doing (even when I don’t have any idea at all). Google Docs? Umm, sure, I can do that! I was practically born doing that. I’m totally who you need to hire. After working on this for a while, I noticed it was sunny and warm outside. What does a freelancer do when it’s sunny and warm? Head to my third office, which is outside on the chaise lounge, of course. So I packed up the laptop, water, phone and a pair of binoculars (I have to be prepared to see fabulous birds outside) and commuted to pletely by the seat of my pants. On any given day I might have my third home office on the deck. This is a seasonal- af no work to do, or I might get pulled in different directions by fair and completely at the mercy of the Pacific Northwest three or more different jobs. weather, but when it’s good, it’s very good. On the day I am writing this article, for example, I had those Sprawled on the deck chair, I traded emails with my com- morning phone sessions. Then I sent an email to my parks boss pliance boss — that file still won’t make it to my email — and about an off-site meeting we had the following day. After that I worked on an upcoming column. worked on one of the long-lost compliance projects for a couple After hours of being glued to my laptop and phone I headed of hours and submitted it while emailing that boss that the sec- out for a two-mile “jog” down on the waterfront in my wheel- ond job wasn’t making it into my email. chair. I appreciate being able to schedule my day however I need to, and I’m a lot better about getting exercise than I was when I worked 9 to 5. After my jog I do arm exercises and use the balance disc to work on my trunk strength for sled hockey. I started playing a couple of months ago and after tipping over repeatedly, it became apparent that my trunk was junk. The balance disc has improved my strength and I don’t tip over nearly as much. I can even make turns without falling over — sometimes. Then I headed out to pick Julie up from work, we picked up the truck and went out for dinner to cap off the day. Tomorrow will be completely different, which is the best part of the freelance life. It is work I can do on my own, at my own pace and with a maximum amount of flexibility. It allows me to slowly work my way back into “real job” shape while recovering from a yearlong health vortex. My confidence was shattered when my health went off the rails and I really didn’t begin to get it back until I started working again. 203.778.4711 I’m applying for more traditional topolinotech.com Engineered For Life work now. I need the money and could use the company, but I sure will miss my commute to the sunny back deck.

32 NEW MOBILITY A FASTIDIOUS DAY IN THE LIFE BY IAN JAQUISS

or most of my life, 48 years as I write this but 49 when For most of my life getting out of bed and into the wheel- you read it, I have been an early riser. I have never been chair has been easy for me, and I realize now I took that for a good sleeper, but I seem to be especially bad lately. granted. Standing to transfer is not as easy as it always was. FInitially, I credited an eagerness to see what the day held. Now I am an incomplete para with full feeling, which has been a I blame an aching body, not terribly well cared for, showing blessing most of my life — but now a curse because I hurt. the signs of living with a spinal cord injury since I was 2 (car Once out of bed, I zip to the bathroom to cath and brush versus pedestrian — I lost). Most days, I wake before the alarm the sludge out of my mouth. Then, after keeping the dogs and quickly shut it off so my wife can sleep a bit longer. from following me to the bathroom and hoovering any cat food left, I make my way to the front of the house, through the maze of dog and kid toys strewn about. I try to do everything Hot morning beverages as quietly and quickly as possible to lessen the chance of wak- are serious business at the ing the better halves (my wife and 9-year-old daughter). I have Jaquiss house. The ladies learned the longer they sleep, the greater chance I have for a love tea, but Ian is all about the pour-over coffee. more stress-free morning. My morning duties are to let the dogs out and in, feed them and get the various morning drinks started. I am a coffee guy. To be most precise, I am a pour-over coffee guy and have a kettle with a long, slender spout specially designed for making coffee the way I do. My wife got it for me, but were my father alive, I suspect he would be unimpressed by my fastidious morning rituals. I start another kettle for the tea drinkers (I am looking down my nose at them in spirit while I type that). From there it is time to prepare my yogurt parfait. My wife makes our yogurt, thanks to a suggestion from one of her fellow PTA do-gooders. Everything that happens in the morning does so with the local NPR affiliate on in the background. The bosses are usually up by the time I have made my breakfast, coffee and my daughter’s tea. We have breakfast together and then peel off to get clean and dressed. One bathroom for three people including a soon-to-be teenager is really not enough, by half. Getting dressed involves little more than falling out of my chair in a controlled way, and pulling the clothes on in the proper order. The act of dressing is made easier by the fact that I generally wear the same combination of things every day: dark trousers and blue shirt. I only have one pair of shoes suit- able for work — in some ways, being a person with a disability is cheap. Once the buttons are buttoned and the shoes are on, I climb back into the chair, say goodbye to my wife and daugh- IAN JAQUISS, 48, T10 INCOMPLETE ter, and drive to work. Traffic in Portland is generally great and my office is pretty Turf: Portland, Ore. close, so the commute is easy. I work for Oregon Health & Sci- Employment: Disability Awareness Trainer ence University as a disability awareness trainer and commu- Job perk: Watching people without disabilities shed their fears nity outreach specialist. Primarily I teach participants how to His ride: TiLite be comfortable around people with disabilities. Cath of choice: Coloplast Several years ago OHSU realized that few people with Husbandly duties: Letting the wife sleep in disabilities worked there. To better understand why, OHSU Pro tip: Use a pour-over coffee kettle or you might as well conducted enterprise-wide surveys and focus groups of its drink tea. employees with disabilities, and the results largely showed that they felt excluded because few people talk to them, and non-

SEPTEMBER 2015 33 disabled people were not talking to them because they were afraid of saying the wrong thing. The idea that someone would not talk to me because they were afraid of offending me was foreign. However, I have heard that explanation so many times since I have been at OHSU that I believe it. I lead the training by telling the class not to ask how a person acquired his or her disability — focus on the person. Then I always tell the class how I acquired my disability, and if the class goes well, they always forget that part by the end. I also do outreach and help to recruit both people with disabilities and veterans, working with job coaches who have clients with disabilities as well as with groups and agencies that serve veterans. These responsibilities are daunting, but it is incredibly rewarding to work for an institution that values diversity so much. And, I am thrilled to report that OHSU is making progress in both categories because of an institution- wide commitment to both those groups. My position is located in the Affirmative Action and Equal Opportunity department where I work alongside civil rights investigators, a compliance analyst and a tremendous ad- ministrative staff. Ours is a small department, but with our partners we have a great reach. OHSU has a main campus, largely contained at the top of a large hill, and a smaller, growing campus along the Willamette River in southwest Portland, and my office is between both campuses. I have meetings and Ian’s brother got him a Simpsons 10th Anniversary Grill as a gift and it conduct trainings on both, and so consequently I cover a lot quickly became one of his most prized possessions. of ground, in every way. I also meet, see and work with a lot of people. And, like other people with disabilities I know, I have ® memorized where the best bathrooms are on the campuses. Interestingly and kind of sadly, I have yet to meet a fellow The Para Ladder OHSU employee who uses a wheelchair or even a scooter. Although it’s cool being the only person in a chair here, I am A Stairway to Independence bummed that I don’t get to lord my cool titanium chair with The Para Ladder provides safe floor transfers red spokes over lesser chairs. for wheelchair users. Able-bodied users can go The commute home is often slower than the morning drive, from the floor to standing postition. but still it is not bad. In the summer, I assume cooking and cleaning duties for the family. Because the weather is gener- Minimize Staff Workers’ Comp claims and ally perfect here in the summer, I grill almost every night and insurance cost from lower back injuries resulting we only use charcoal. Food, coffee and beer are three of my from lifting patients biggest passions, and if all goes well, a good day will encom- pass all three. We try to stay outside as long as light provides or until the kid demands to go to bed. Actually that has never happened, but allegedly there is a first time for everything. When we go inside, I like to get out of the fancy wheelchair as soon as possible. The newly acquired aches, pains and spasms that are affecting my sleep and creeping into my waking hours are less bothersome when I’m out of the chair. My nighttime rituals involve getting the kid into bed, making popcorn using a popping device on the stove, and reading. I vowed to the kid that I would give up television for a year and I have been mostly good, other than the Letterman finale and We Care Designs one NBA finals game. VA Approved • www.paraladder.com My cathing program consists of “as needed” or when I 877-288-4988 • U.S. & Foreign Patented haven’t gone in a while. That has worked well, generally. Sleep- ing is my biggest challenge right now, but I am working on it.

34 NEW MOBILITY A TYPICAL DAY AS ELLEN BY ELLEN STOHL

“Woke up, got out of bed, dragged a comb across my head ...”

h — if it were only that simple. As an incomplete quadriplegic of 32 years, my mornings start out a bit slower. On Tuesdays and Thursdays I teach at Cal AState, Northridge, so the alarm rings at 6:50 a.m. On Mondays and Wednesdays I have until 7 a.m. and on Fridays until a glorious 7:15 a.m. Thankfully, the weekends are usually alarm- free; time to sleep in, enjoy a good roll in the hay, or both! I usually wake throughout the night. There are spasms and pain to deal with, along with a snoring husband. Add in dogs, cats and a kid that all consistently find their way into our bed each night, and it becomes quite full. But honestly, even alone I have trouble sleeping, so I wouldn’t have it any other way. I usually drift back into a dream state an hour before the alarm sounds and wake up in a groggy fog begging for another five- more-minutes. My daughter’s sing-song, “wakey, wakey,” or the melodic tune my husband, David, has chosen to arouse the masses usually clears the fog. Once alert, I lie in bed a few minutes and try to reflect. I read the canvas print across the room that reminds me to “Be thankful, live fully, laugh often, and appreciate life.” I take the words to heart, then slowly use my arms to straighten my legs, remove the knee pillow, and push myself into a seated position. Alexander Slanger by Photo I usually have enough strength to achieve this on my own, but occasionally need a strong hand to assist me. ELLEN STOHL, 51, C8-T1 QUAD Once up, the transfers begin. Most are fairly easy, but I still Turf: Northridge, Calif. need support so I don’t fall. I fell a few years ago and broke my Employment: University Instructor leg in three places, so now I’m overly cautious. David helps in Getting around campus: Slips a motorized Go-Ped the morning, and since we have been together 21 years, he is kids’ scooter under her front casters well aware of my needs. From bed to chair, chair to toilet, back Bathroom gear: The Toilevator to chair, to shower, to chair again — I glide easily from one Shopping for the fam: Amazon Prime Fresh to the other because everything is the same height. I have the Pro tip: Bladder Botox — it’s not just for wrinkles. Toilevator toilet seat riser mounted under my commode. No one else can touch the ground when seated on it, but it makes transfers a breeze. I slide over effortlessly, pull each leg up to that helps me maintain confidence throughout the day. the seat of my chair and grab my catheter kit — a mirror, book Once up and showered or “spit-bathed,” I get dressed, light and my catheters. I position the mirror, adjust the book put on a little make-up and head for the kitchen. I hate the light, find the urethra and wheeeee, literally. make-up process. My gimpy fingers find it hard to create a I’m lucky I have enough finger control to cath independent- straight line, but without a little color I look like a ghost with ly — at least, most of the time. Occasionally, the urethra is un- no discernable facial features. I’m thinking about permanent cooperative and I need an extra set of eyes and hands to get the make-up, but find my husband resisting the idea. He tells me job done. I recently got Botox shots in my bladder and that has I don’t need it and am beautiful as I am. I appreciate the senti- made urinating a breeze. No leaking and a consistent schedule ment, but let’s be honest, the rest of the world does not view me mean only a few trips to the toilet a day. Fewer transfers equal through his loving eyes. I figure a dab of eyeliner, a feather of a greater independence. Bowel movements aren’t as simple or brow and some naturally colored lips that don’t need to be ap- consistent. My injury is incomplete so I know when I have to plied daily would make me feel prettier and move my morning go, but keeping the right consistency to make the process run along at a much quicker pace. smoothly is difficult. I try digital stimulation every morning to David is in charge of breakfast for everyone and up until ensure the bowels are emptied. This is usually a quick process this year I was responsible for packing my daughter’s lunch.

SEPTEMBER 2015 35 (Right) Everyone does their part when it comes to house- hold responsibilities to keep the Stohl family, pictured here doing their best Simp- sons impersonation, running smoothly. (Below) Ellen relies on a converted Scion to get around, including to and from her job teaching at

Cal State, Northridge. Photo by Jonny Vincent

Suddenly at 12, Zoe has taken over packing her own lunch, but I still get the final word by checking the contents for a well- balanced meal and adding a Lunchbox Love note. In exchange, Zoe makes me a cup of coffee to go and stirs up some Mega Greens so I can wash down a handful of vitamins. One final check for homework, backpack, work items, etc., and we hit the road. I drive my daughter in my adapted Scion, and my husband picks her up. On teaching days, I use a Go-Ped scooter under my front casters to transport me around campus. I can’t get it into my car alone, but at a university there is always someone to help. I’m hoping to get a Smart Drive to increase my mobility, but insurance is slow and hard to convince. I have been assigned a classroom in my department’s building so I can easily access Alexander Slanger by Photo the copiers and office support. I also use the same class for and organized to function well, so everyone does their part. both courses and have my own locking file cabinet in the class- Amazon Prime and Prime Fresh have reduced the shopping room itself. This is a rarity for college instructors, but without burden and made life a lot simpler. it I would have to tote around a ton of stuff. Teaching itself is My daughter is more independent now, but I still check easy for me. I use the computer to provide visual support for homework daily and go over upcoming events. On days I don’t course content and can write on the whiteboard if need be. I teach, I grade, write, audition or pursue some other interests plan my semester carefully so I can have everything ready, and or endeavors. I find I’m always doing something. Every other I use my experience as a person with a disability to enhance Wednesday, I take a spa day and get my nails done, and on my lectures. I teach the Psychological Foundations of Learning and Teaching class, so we cover a lot of content on individual Fridays, I volunteer at my daughter’s school. Weekends are differences and needs. usually family time and include lounging around, reading, After work, I take an adaptive phys-ed course on campus entertaining or catching a film. Most days end shortly after where I get range-of-motion and a personalized exercise dinner. On a rare occasion I’ll go out with my girlfriends for routine. Tuesdays and Thursdays are full days, and by the time happy hour, but I prefer to entertain at home. My house has I get home, I’m exhausted. Luckily, David plays tennis those been designed to meet my needs and in it I have the environ- nights so it’s just my daughter, my PCA Jeff and me. Jeff gener- ment and support to function independently. I am thankful ally gets take-out for us or we put together a small meal. I often every day for all that I have. I know life using a chair makes cook the other nights, using David or Jeff as my sous-chef. everything harder. But as Kirk Kilgore, an amazing man and They are also in charge of dishes. We have a weekly house- quadriplegic, once told me, “Walking might make life easier, keeper, but daily upkeep is a joint effort. I need things neat but that doesn’t mean it would make life better.”

36 NEW MOBILITY Serving the Community Since 1979

Explore new products, experience the fun! Leading-Edge Products State-of-the-Art Tech Assistance Animals Adaptive Sports Inclusive Dance Vital Services Fun for the Kids Essentials for Seniors Info-packed Workshops FREE ADMISSION

Boston - Sept. 18-20, 2015 DC Metro - Dec. 4-6, 2015 Los Angeles - Feb. 5-7, 2016 Boston Convention/Exhibition Center Dulles Expo Center Los Angeles Convention Center

New York Metro - April 29-May 1, 2016 Chicago - June 24-26, 2016 Houston - August 5-7, 2016 New Jersey Convention & Expo Center Schaumburg Convention Center NRG Center (Formerly Reliant Center)

NewMobility.indd 1 7/1/15 2:45 PM Thank You to Our Chapter Leadership Meeting Sponsors

Corporate Diamond Sponsors

Corporate Sapphire Sponsor Corporate Silver Sponsors

full Corporate Platinum Sponsor color

CLMbl acSilverk Sponsor

w hite Corporate Gold Sponsors CLM Bronze Sponsors

SPINAL NETWORK FOURTH EDITION 400 PAGES OF: HEALTH // RELATIONSHIPS // SEX // SPORTS TRAVEL // EMPLOYMENT // RECREATION INDEPENDENT LIVING // INSURANCE ADVICE CURE RESEARCH // ATTENDANT SERVICES CIVIL RIGHTS // HUMOR $17.95$29.95 + + Free$10 s/h shipping* To order call toll free, visit us online, or send check or money order to:

SpinalSpinal Network Network 120-34PO Box 220 Queens Horsham, Blvd, PA 19044 Suite 320, Kew Gardens, NY 11415 888-850-0344, ext. 209 *US ONLY 800.404.2898,www.newmobility.com/bookstore.cfm ext. 7260

www.unitedspinalstore.org/products/SN enter code NM13 a Publication of United Spinal Association

38 NEW MOBILITY SPOTLIGHT: LITTLE ROCK, ARK. BY ERIN GILDNER

MY TAKE SKINNY ON THE CITY Little Rock is not usually the first With approximately 200,000 people calling it home, Little Rock is the most popu- choice when thinking of a vacation des- lous city in Arkansas. Since it is also the capital, it was once the home of former tination or a city to move to, but I feel President Bill Clinton, when he was governor, and you will find his presidential it is unjustly overlooked. I wasn’t plan- library and museum situated right on the Arkansas River bank. ning on living here permanently when I moved to the city in January 2002 from Florida, but I quickly fell in love with The riverfront area is home to the city’s beautiful scenic views, rolling many inclusive hills and friendly people. I events. also liked that I didn’t have to spend hours on the interstate during rush hour and that it seemed as though everyone knew each other, despite it being the largest city in the state. I didn’t live here long

before my life-altering injury occurred, Photo courtesy of Arkansas Department of Parks and Tourism but I already felt at home and wanted to stay. This is a great place to raise a Learn family and the city is continually mak- about the Arkansas ing changes to the built environment to Chapter on become more inclusive for all residents, next page no matter their age or abilities.

GETTING AROUND downtown Little Rock. You could spend shops and art galleries. You can visit the I am blessed to have a car with hand con- your entire stay in this area and never Museum of Discovery, the Witt Stephens trols so I’m able to get where I want to go, run out of things to do. The neighbor- Jr. Central Arkansas Nature Center, Wil- but visitors or residents without access hood is home to amazing locally crafted liam J. Clinton Presidential Center & to adaptive vehicles have a much harder beers, unique restaurants, and lots of fun Park, and also the Heifer International time getting around the city. It’s best for headquarters and Heifer Village. Street visitors who use wheelchairs or mobility MUST SEE, MUST DO parking can be difficult to find, but plen- aids to stay downtown since it’s easier to ty of small parking garages and lots are travel by chair or bus from this area. The located close to the action with accessible Flying Fish of Little Rock: This dining Central Arkansas Transit Authority does parking. The sidewalks are fairly easy to establishment almost always has a have accessible buses (and some inacces- travel and curb cuts are located every- line out the door, but it’s worth the sible trolleys downtown), but not all bus where, although not always in the best wait. The fried catfish is some of the shape. At the farmers’ market, open ev- stops are accessible, and to my knowl- best I’ve ever had, and you can also ery Saturday from May to October, you edge the routes don’t cover all parts of the get delicious healthy grilled options. can shop for Arkansas-grown produce, city. LINKS Paratransit is available, but locally sourced products and meat, and you must submit an application, provide William J. Clinton Presidential Cen- handmade local arts and crafts. proof of disability and call a minimum of ter & Park: One of the largest presi- Two must-see bridges located along the 24 hours in advance. There is an option dential library archives in American scenic 15-mile Arkansas River trail in the to rent accessible vans, however, through history also has a full scale replica of River Market: the Junction Bridge and the www.wheelchairgetaways.com, which has the Oval Office. The surrounding park Clinton Presidential Park Bridge. Junction partnered with a local business, Accessi- showcases native wildlife and river Bridge, spanning from River Front Park to bility Specialties. life of the restored wetlands habitat. the Verizon Arena in North Little Rock, is a Big Dam Bridge: This pedestrian/cy- 100-year old “lift span” bridge transformed PLACES TO GO clist bridge is beautiful at night, when into a pedestrian/cyclist bridge that has Many different areas are worth high- it is illuminated by LED fixtures with 16 an elevator. The Clinton Presidential Park lighting, but the most accessible area million possible color schemes. Bridge is a very accessible ramped multi-use is the vibrant River Market district in trail that closes the loop on the River Trail.

SEPTEMBER 2015 39 Chapter Check-In

Arkansas Chapter: Getting Things Rolling Every year many people approach United use wheelchairs,” she says. “I was going out Spinal about starting a new chapter where and working with all these people in state they live, and every year many of those same government and it was such a novel concept people discover that getting a new chapter to them that somebody with a disability off the ground is no small feat. Even with the was working. It started to really get under support of the parent organization and a fer- my skin, and I started to do a lot of research vent desire to help the local SCI community, about what I could do.” the logistics of making it happen and mak- Arkansas has a Spinal Cord Commis- ing it successful can be tricky. Erin Gildner sion that runs an SCI registry and helps low learned that first-hand as she worked to start income people with spinal cord injuries, the Arkansas chapter. but Gildner sensed that the local SCI com- “It has been frustrating,” Gildner says. munity needed more. “There are so many “There are a lot of moving parts to get this people and organizations all over the state done. Our state is very rural and we don’t have that are doing good work, but they’re not a model spinal cord injury center.” connected and there is not a unified voice,” Erin Gildner (front left) and other Arkansas mem- Gildner, a paraplegic, began to see the she says. “We haven’t really had a forum bers met with U.S. Sen. John Boozman, R-Ark., need for a new organization when she started that’s a safe place for all the groups to meet (back middle) at the 2014 Roll on Capitol Hill. working in state government as a grant and to network. That’s where I am thinking coordinator in 2009. “I just became very the chapter can bring a novel approach and online community on Facebook for Arkansas interested in public health and the lack of give them that space to be able to interact women with spinal cord injuries, and she participation and employment for people and know where we want to go and what we hopes to expand on that. She is also looking who have disabilities, especially those who want for our state.” at offering adaptive sports and assembling a Gildner first contacted United Spinal’s registry of accessible parks. Her biggest focus director of chapter relations, Nick LiBassi, is helping bridge some of the gaps in state about starting a chapter in 2012. On the services. “The transition from pediatric to heels of her first advocacy trip to Wash- adult health care and the community supports ington, D.C., she and an Arkansas friend around that are very, very weak, and there are started discussing the holes in the state a lot of families that don’t realize that life can support system and brainstorming how they be just as fulfilling as an adult with SCI as it could address them. But as it often does, is for anyone else,” she says. “There are low life intervened. Finishing graduate school, expectations a lot of the time.” raising kids and having difficulties finding Gildner hopes to have the chapter off the the right professional to work with kept ground and running by the time this article is delaying the chapter’s launch. The whole published. “I’ve met with lots of family mem- endeavor nearly fell apart this year when bers and doctors and they’re just so excited for Gildner’s family almost had to move be- the potential,” she says. “We call ourselves a cause her husband took a new job. chapter and we are, but we’re just emerging.” Luckily the family stayed put and Gild- ner recently found the medical professional To start a United Spinal chapter or support she felt the chapter needed for its board. group where you live — or to find out more “We haven’t really had a forum that’s a safe “Finally having that piece of the puzzle and about the organization or if there are chap- place for all the groups to meet and to network,” having her on board, I think now we’re go- ters or support groups around you — contact says Gildner (right). “That’s where I am thinking ing to take off,” she says. Nick LiBassi at [email protected] or the chapter can bring a novel approach.” Gildner has already built a successful 718/803-3782, ext. 7410.

United Spinal Association’s mission is to improve the quality of life of all Americans living with spinal cord SPINAL CORD RESOURCE CENTER injuries and disorders (SCI/D). Membership in United Questions? We Have Answers! Spinal is open to anyone with an interest in SCI/D. For 800/962-9629 www.spinalcord.org/resource-center more information on the benefits of joining, visit www.unitedspinal.org or call 800/404-2898.

40 NEW MOBILITY News

United Leads Uber Protest United Spinal Association, Taxis For All Campaign and other wheelchair-using advocates held a “roll-in” outside Uber’s West Side headquarters in Manhattan July 30, calling on the company to end its discriminatory practic- es and to start serving wheelchair users, blind people and other disabled communities in New York City and around the United States. The protestors urged Mayor Bill de Blasio, the City Council and the Taxi and Limousine Commission to enforce rules and pass new legislation that would require Uber and other app- based transportation services to serve wheelchair users. “Uber’s zeal to replace the soon to be 50-percent accessible yellow cab industry — coupled with its refusal to operate even a single accessible vehicle — is jeopardizing the The First Annual Disability Pride Parade had a great turnout on a beautiful New York summer day. taxi option for wheelchair and scooter users,” says James Weisman, president and CEO of United Spinal Association. “The needs and their supporters noted that 25 years after the retired from the fight … we know that when rights of people with disabilities should not be Americans with Disabilities Act became law, companies hire people with disabilities they ignored on the 25th anniversary of the Ameri- the six-year-old company has consistently re- get the best workers, the most loyal workers, cans with Disabilities Act,” he adds. jected direct appeals to offer accessible service the most productive workers,” said Harkin. TLC records show that at least 20,777 here or in other cities July was designated as Disability Pride Uber vehicles are on NYC streets, but not “Uber says it’s revolutionizing the taxi Month in honor of the 25th Anniversary of one Uber vehicle is wheelchair-accessible. business, but what it’s really doing is engaging the ADA. New York City planned a month- Accessible taxis typically have a ramp that in old-style discrimination,” said protest orga- long series of events to celebrate New York- allows wheelchair and power chair users to nizer Jean Ryan, a Taxis For All leader and a ers with disabilities, including an exhibit at roll into and out of the vehicle. vice president at Disabled In Action. the Brooklyn Historical Society titled “Gain- Holding signs reading “Uber UNFAIR,” ing Access: The New York City Disability “Uber: NOT innovating, JUST discriminat- Disability Pride Parade Rights Movement.” It‘s the first museum ing” and “Uber: Stop Your Old Time Dis- a Success exhibition about the New York City Disabil- crimination,” wheelchair and scooter users and United Spinal’s members and staff were out ity Rights Movement. in full force to celebrate New York City’s First Annual Disability Pride Parade on July Great Turnout for Women 12. United Spinal marched up Broadway with Disabilities Conference alongside our New York City chapter and United Spinal Association was proud to co- many other advocates and organizations from sponsor the sixth annual “From Within” health around the Metropolitan area to celebrate dis- conference for women living with physical ability empowerment. disabilities hosted by Independence Care Among the 3,000 parade participants were System on July 24, at John Jay College in New people using wheelchairs, canes and service York City. Women with disabilities from all dogs, and people who were waving flags and around the tri-state area attended this official banners for their individual causes. All were ADA25NYC event. united in the mission to raise awareness on dis- This year’s From Within was the larg- ability rights and to call for improvements in est ever, with over 150 guests attending the accessibility, health care and employment. event. Victor Calise, commissioner for the Former U.S. Sen. Tom Harkin, D-Iowa, Mayor’s Office for People with Disabilities, a who sponsored the Americans with Disabili- former employee of United Spinal and a sup- ties Act 25 years ago, served as the parade’s porter of From Within for many years, was grand marshal. He commended the city’s invited to speak at this year’s conference. progress toward accessibility but said the high Other co-sponsors included the Mayor’s The lively protestors made it clear that they unemployment rate for people with disabilities Office for People with Disabilities, the MS will not sit by and idly let Uber continue to shows there are still remaining struggles. “I Society and the CUNY Coalition for Stu- ignore the disability community. may be retired from the Senate, but I’m not dents with Disabilities.

SEPTEMBER 2015 41 News

VetsFirst Testifies on Employee Appreciation Day VA Programs VetsFirst Director Ross Meglathery testified before the House Committee on Veterans’ Affairs Subcommittee on Economic Op portunity regarding the VA’s Vocational Rehabilitation and Employment Program. Meglathery stressed the need to provide disabled veterans with appropriate training to reintegrate into society and the workforce. He noted the VR&E program is of great importance to VetsFirst, but added the program “lacks the resources needed to best assist all disabled veterans in returning to employment.” Also, the VR&E program needs to expand the number of years that qualified veterans are eligible for it. Currently, veterans are eligible for On July 17, the staff of United Spinal celebrated Employee Appreciation Day at its Fort Totten site. VR&E within 12 years of active military Employees from all divisions of the organization separation or when the VA notified them of gathered for a day of fun in the sun, including their qualified service-connected disability. lunch, games, cake and the awarding of the Em- This isn’t enough time for some vets, says ployee of the Year award. This year’s award went Meglathery, and he used his own experi- to Bill Fertig, director of United Spinal’s Resource ence to explain why. Center (pictured at Roll on Capitol Hill, right). Meglathery says he was 30 when he first saw combat and “I cannot imagine what it would have been like to experience that as an 18 year-old.” If a vet becomes disabled at 18 as a result of his service, then his 12 years would be up by the time he was 30. “But 30 years was not enough life experience for me to know myself, as it takes time to come to terms with the trauma of war. For others, this may likely be the case as well.” At 30, a vet disabled at the age of 18 during his first tour would already have run out of time to be eligible for VR&E. Meglathery also says VR&E caseloads are still too high and resources are not suf- ficient to provide timely results. He asked Congress to appropriate more funding and support efforts to properly staff VR&E. He suggested partnering with nonprofit organizations that provide intensive services needed to assist veterans with significant disabilities in returning to and remaining in the workforce. Meglathery emphasized the real indica- tor of VR&E’s effectiveness is in the long- term success of the veterans it helps. He suggested the VA monitor veterans’ employment for at least a year, with a counselor periodically following up. This would keep tabs on the effectiveness of the program and also hold employers accountable to their com mitment to support VR&E.

42 NEW MOBILITY News Did You Meet Ross Meglathery, New Director of VetsFirst KNOW... About Me My Vision As the newly minted director, I wanted to take With so many veterans service organizations the opportunity to introduce myself and discuss out there, one may ask what makes VetsFirst my vision for the direction of VetsFirst. First off, special. We are different and special based on I want to let you know just how delighted I am to our history, our membership and the actions be working for VetsFirst and to be advocating for we take on behalf of the veteran and disabled our United Spinal Association veterans. I would communities. also like to recognize how fortunate I am to be Our history is nearly 70 years in the mak- working under the leadership and tu- ing, and in that time, we have led the telage of Jim Weisman, who as I am efforts for access and reintegration sure you know, has taken the helm for all disabled Americans. On the of United Spinal as its CEO. He 25th anniversary of the passage of the Disability has served the members of United Americans with Disabilities Act, it is etiquette

Spinal for over 35 years, and I am critical to recognize it would not have Tips On Interacting With People With Disabilities appreciative that I can look to such been possible without the post-World Understanding the (ADA) an experienced advocate for any and War II veterans’ demand for access Americans with Disabilities Act all support. Additionally, I would starting 45 years prior. also like to thank Joe Gaskins for his Ross Meglathery It is not just our history of advo- leadership. He has positioned Jim for cacy and the veterans who carried on success as CEO and I have the continued good that legacy where VetsFirst makes its mark. I fortune to work with Joe to fundraise in order to want to continue to build upon several areas Fire Safety for Wheelchair support future VetsFirst initiatives. in which we are already leaders and to expand Users at Work and at Home A little about myself: Upon graduation into new territory. Currently, as a Department of from college, I was commissioned as a Ma- Veterans Affairs-recognized National Veterans A Publication of rine officer. In this capacity, I served a tour in Service Organization, we excel at processing Western Sahara, Africa, as a United Nations veteran benefits claims and appeals. Our Ask military observer and two combat tours in Iraq VetsFirst website provides accurate informa- as an artillery officer and joint terminal attack tion with a targeted response time of 72 hours. controller. Upon leaving active duty, I became a Recently, we established a pilot program with national security and defense consultant where Vets101, an all-in-one veteran issues informa- A Publication of I worked supporting the federal government. tion site. This partnership builds on the success While serving in the Marine Corps Reserve, I of Ask VetsFirst and helps VetsFirst plug into all was selected to become a Congressional Marine issues affecting veterans. Fellow where I worked for a member of Con- On the advocacy front, we help shape gress who was on the House Armed Services legislation that supports veterans and disabled United Spinal Association Committee. Following the fellowship, I went Americans by informing members of the execu- produces more than 30 back to consulting but realized it was not my tive and legislative branches about the issues passion. Therefore, I attended graduate school affecting our community. We do so through brochures and pamphlets and earned a master’s degree in public admin- working with government staff, the health care on subjects like Disability istration. As luck has it, VetsFirst was looking and veteran-related business community, and for a new director, and that is how I arrived at a through testimony on Capitol Hill. Etiquette, Fire Safety job that supports my goals of serving my fellow I want to expand VetsFirst into new areas. I for Wheelchair Users countrymen and the veteran community. want us as a community to identify innovative As a combat wounded veteran, I am excited technologies to improve quality of life for our at Work and Home and to work for an organization with an unbroken members. My hope is that this will be a two-way connection to the injured service members who street, where VetsFirst will learn about new tech- Understanding the ADA. founded it. Our paralyzed veterans demanded nology while our members inform us of their You can download them to have their voices heard when they came needs, so we can be more responsive to them. home and saw they were not afforded the same In addition to identifying new technology for FREE or order printed opportunities as their fellow citizens. They and medical treatments, we will build relation- copies on our website at wanted to get back to work and reintegrate into ships with industry so they partner with us in society. It was not special treatment they sought testing and evaluation. As a test bed for industry, www.unitedspinal.org but, rather, equal access. Great strides have been we hope to obtain low-cost equipment for our made for our disabled community. However, members. Ultimately, a VetsFirst’s seal of ap- there is still more that can be done. proval will be sought as an industry standard.

SEPTEMBER 2015 43 BACK TO SCHOOL: Stories of Success on Campus

BY STEPHANIE D. LOLLINO

oing to college is a major life tions — they’ll even move the classroom change for anyone, and it may if needed. For taking tests, I would G present an especially daunt- dictate the answers to my computer, ing challenge for wheelchair users. Yet and the professor was always OK with students who use wheelchairs frequently it. Sometimes I could email stuff in, so report they can usually find their way keeping up was much easier than you around accessibility problems. The main would think. It was great to be right on issue, they say, is figuring out how to campus, in the city and not at home.” make the “back to school” transition. Carrie’s mother, Pamela, was “Once you’ve set the goal that you’re astounded when her daughter decided going to do it,” says Kris Cichowski, to move onto campus, especially since Living in a dorm helped Carrie learn to manage she had only spent one semester after founding director of the LIFE Center at her care and live independently. her injury commuting back and forth the Rehabilitation Institute of Chicago, from home: “She lived in a dorm room “make sure you’re medically ready. Do ed the waters? I don’t think there’s ever a by herself, and her personal assistants time you can say, ‘Yes, I’m totally ready you have your care down? And maybe would come and go. And then unbe- right now,’ because a lot of times you have that doesn’t mean you do it yourself, but knownst to us, prior to graduation, she to jump off and see how it works.” can you instruct other people? Have you found herself an apartment.” put yourself out in the community? Test- Following are stories of people who Carrie has been living independently took that jump and discovered they ever since. handled college just fine. Visit the Campus Commuting From Home Going Away to College Nick, 37, C5-6, Chicago Community Col- “I would encourage people to reach Carrie, 32, C5, DePaul University, lege and University of Illinois, Chicago out and meet students at your Chicago Nick sustained his injury just as he prospective school, see where you’re Carrie became a quadriplegic in 2003 going to live, get an idea where the while attending DePaul University dining hall is, things like that,” says Ev- in her hometown of Chicago. When erett Diebler, 31. Everett, who has CP, she was ready to return to school, she attended Millersville University near discovered her dorm was accessible and Lancaster, Pa., and has a bachelor’s all she needed was just a little assistance. in psychology as well as a post-bac- Fortunately it was easy to find. calaureate certification. “Be sure you “When I went back to school, there know where your classrooms are go- were all sorts of accommodations. ing to be, check out the housing halls. There were people to take notes and I These are things you might not get a had a personal assistant who’d come sense for when you’re on a tour.” to class with me,” says Carrie. “Teach- Commuting from home proved a good option ers are willing to make accommoda- for Nick while he finished his degree.

44 NEW MOBILITY “It was three months after I was injured that I went back to school, and my family was over 500 miles away. Now, I have a master’s degree in community economic development, and I’m going for my Ph.D.” – Megan, 38, who became paraplegic at age 18 and attended the University of Texas at Austin

Also, he had a reliable support system on campus. “My mom actually works at Have a Support System my college,” says Patrick. “So she would “My family was within an hour away, come to help me whenever I needed. It and the Hershey Medical Center was was wonderful. I graduated with a de- close by,” says Paul Fogle, 31, who has gree in business and engineering. I know a bachelor’s in public policy from Penn it sounds weird, but with having the ac- State Harrisburg. He has a pulmonary cident, so many more opportunities have disability and uses a scooter for mobil- opened up for me. I think I have more ity as well as a ventilator at night. “If opportunities now than before.” there was an emergency, I would call my family.” If your school is far from There’s no need to rush back to school, says Jack, 67, T12-L1, University of Illinois family or your own doctor, be sure to Patrick. Do it on your own schedule. create a new support system, whether Jack became paraplegic many years ago Resources Office and only experienced at the age of 26 just as he was about to it be friends or getting support from a one issue with one of my classes being local United Spinal chapter or Center graduate from college, and he agrees scheduled on the second floor without for Independent Living. with Patrick that having a spinal cord an elevator. By the next day, the class- injury can change the course of your room location was moved.” life, inadvertently leading to unexpected Nick continued to commute from was about to finish high school, and he possibilities. “I broke my back two weeks home. Since the majority of his classes recognized college would be especially before I graduated from undergraduate were all within a half-block radius, living important for him. “Since my level of school,” he says. “I had a job waiting for on campus offered no extra convenience. injury is C5-6, I knew I wouldn’t have me in Aspen, Colo., as a surveyor and many transferable skills to offer the He earned a bachelor’s as well as a mas- land planner. I often tell people that if marketplace without a degree,” he says. ter’s degree in social work. I had taken that job, I’d probably be a He began school by taking it slow. “I started off at a community college It’s OK to Take Your Time because I was still becoming inde- Patrick, 29, C5-6, Drexel University, pendent and working through some Philadelphia daily routine issues.” He also had a few Patrick sustained a C5-6 injury at age 21, medical setbacks but was determined to and as he was still recovering six months complete his degree. post-injury, he decided going back to By the time he started his undergrad- college full-time was too much. “I tried uate social work studies at the Univer- pushing around every day, and I was sity of Illinois, “I was almost four years like, I’m not ready for this.” post-injury and completely independent He took an online class to start, and with personal care and driving. I rarely by the next term went back to classes as Jack credits his SCI with changing his career utilized services from the Disability he was stronger and felt more confident. path from ski bum to architect.

SEPTEMBER 2015 45 burned-out ski bum bartender in Aspen the best thing that has ever happened to right now, as opposed to a professional him, and to us, because they take care with my own business.” of everything that worried me about After earning his bachelor’s, Jack sending him to college. It has been so went back to graduate school to get a wonderful because he is encouraged degree in architecture. and enabled to do things himself, and for better or worse, there’s always a re- Figure Out Your Care sponsible adult around in case he needs Before Classes Start one. At this point, we are so happy that Locking down your plan for hiring caregivers Molly, 25, C5-6, Stanford University can relieve the stress of being away from home, he is there and that he is feeling inde- and University of Michigan says Molly. pendent. He has a peer group of other Since Molly became a quadriplegic at students who have major disabilities. I liked Stanford, so I applied and got in.” 15 while still in high school, she began They’re all intelligent kids, they’re all Two weeks before the term began, Molly learning how to handle her care in a getting on with their lives, and it’s kind pulled into town, moved into her dorm classroom right away. “My sophomore of like this whole band of young people, and began learning to live on her own. year I was part-time,” she says. “I did who are like, “OK, so I got a problem. It turned out managing her daily care two classes in the hospital in the fall, and What’s your problem?” was more stressful than she had antici- then three in spring. Then my junior pated. “I was hoping Stanford could help year, I went back pretty much full time.” me find caregivers, or could at least suggest She went to summer school, determined some agencies or help me advertise,” Molly to graduate on time, so it’s no surprise recalls. “They basically said that was not a she tackled college head-on as well. service their office was going to provide; “Basically, I decided I was going to go they weren’t going to help with that.” where I wanted to go to college and then After dealing with a series of incom- figure out the accessibility part later,” petent caregivers, Molly found a way to says Molly. “I went to California with do many tasks for herself. “There were my mom specifically to look at schools. a couple of days where no one showed, so that meant I couldn’t get out of bed, couldn’t get dressed, couldn’t go to class. For parents like Audrey, watching their kids Have an Assistance Plan You can imagine living 2,000 miles from discover newfound independence at college is profoundly rewarding. As Molly discovered, most colleges and home, not knowing anyone or having universities offer no help securing per- any friends and starting classes, how sonal assistance services or aides. There- hard that was. That was really stress- Stephanie D. Lollino, executive editor fore, it is best if you have your services in ful.” Her solution: “I stopped using the of FacingDisability.com, is a television place before you show up on campus. caregiving agencies and advertised on producer and writer who has worked If you receive personal assistance campus to hire grad students or their with the website since its inception. Her services, speak with your current service spouses.” That was the magic combina- extensive background in research, media coordinator and let them know where tion. Once Molly discovered a reliable and creative communication turns the your school is located. Some Medicaid- pool of responsible people she could task of improving the lives of others into a funded programs will allow you to keep train to be her caregivers, getting on with dream job. “Making people aware of SCI your services uninterrupted even in other school became her main focus. However, and everything that goes along with it is states, and will help you to coordinate since they were not eligible for payment something I’m really proud to be a part with a local agency. from government programs, she had to of.” For more information from Facing- Paul says he already had personal pay them out of her own pocket. Disability.com on going back to school, assistance set up and just needed a large Molly finished college and will start visit www.facingdisability.com/spinal- enough living area to accommodate his medical school at the University of cord-injury-videos/education aide. “Penn State has pretty conducive housing arrangements for folks needing Michigan this fall. Resources attendants,” he says. “My dorm room was • Centers for Independent Living, www. like an apartment suite, so there were Nico, 21, C3-4, University of California at Berkeley ilru.org/projects/cil-net/cil-center- four single bedrooms, one common living and-association-directory. Located area, a kitchen, bathroom and living area. Nico, who is quadriplegic as the result of an injury at age 15, is having a fantastic nationwide, CILs are a great resource for It was pretty big.” His attendant did not finding personal assistants, learning the get a bedroom, but since she was on duty caregiving experience at college. He is in the Disabled Students’ Residence accessibility of a new city and more. at night, it didn’t matter. “She hung out in • FacingDisability.com, www.facingdis- the living area and it worked,” he says. program offered by the University of California at Berkeley. ability.com/spinal-cord-injury-videos/ His mother Audrey says, “It really is education. Although primarily operat-

46 NEW MOBILITY ing as a resource-packed website, FacingDis- ability.com has other programs as well and Get to Know the Office of Disability Services can be reached by phone at 312/284-2525. • United Spinal Association, 800/404-2898; It’s best to meet with your school’s Of- you may pick a classmate. “Then that [email protected], www.unitedspinal. fice of Disability Services a few months person gets paid through the Office of org. United Spinal has hundreds of chapters before you’re due to show up on cam- Disability Services. So they are taking and support groups across the country that pus. This is when you’ll discuss what the class as they normally would, but can be tapped as part of your support system. accommodations you’ll need, such as get a little bit of money.” That’s a sweet ensuring all of your classes are held in deal for a struggling student. accessible buildings. The school will ask If you plan to live on campus, ar- for medical documentation, and usually range to meet the school’s housing a letter from your doctor or a copy of staff at the same time you meet with your high school individualized educa- Disability Services. Not only does this tion plan will do the trick. allow you to ensure your needs are met “If you set up a meeting with the ahead of time, but it also gives you an Office of Disability Services before you opportunity to establish a rapport for start classes and talk about accom- when things go awry. modations you might need, then Everett did everything right, met before the semester begins you get the with the appropriate people, and still accommodation letter that spells out found himself in a building where he what you’re eligible for and you take it could not access the laundry facilities. Joel, 34, sustained a T11 injury during high school and to your professors,” says Everett. “The washers and dryers were down wanted a college with a schedule that would enable him This is the meeting where you ask steps into the basement and that didn’t to work full-time while going for a degree. He decided for a note taker if you think you’ll need work,” he says. But it was an easy fix, on Northeastern Illinois University and discovered, to his relief, that accessibility was not an issue. “As long as one. “I used note takers in big lecture especially since his accessibility needs I was able to enter and exit buildings, classrooms and hall situations,” says Everett. He says were well-documented, and he was the all-important washroom — I was OK,” he says. Later there are two ways to get one. Either quickly moved to a building with an Joel attended Dominican University for grad school and the university will provide one, or elevator right to the laundry area. visited the campus beforehand to make sure it met his requirements for accessibility.

SERVICE COMPASSION HOME Quality TRUSTDEDICATION RELIABILITY Committment CARE PROMPTNESS DISCREETNESS SUPPORT

Specializing in Catheters (888) 771-9229 www.strivemedical.com

SEPTEMBER 2015 47 INNOVATIONS

40 Years of Ultralight Progress

By Mark E. Smith

fter 40 years of innovation destroying them. For years, many of us in the ultralight wheelchair have struggled with tweezers or having market, just when you think to disassemble our casters to remove the you’ve seen it all — BAM! — nasty, knotty mess that slows us down Asomething new comes along. When the and degrades our bearings. changes are really good, we say to our- Finally, Frog Legs, legendary maker selves, “I’ve needed that for years!” And, of suspension forks and soft-roll casters, I’ve found some new products that might has brought to market the aptly-named have you saying just that. Frog Shield — a shield for caster bearings that is engineered to keep out the nasty Frog Shield: Stop the Rat’s Nest and knotty stuff. The Frog Shield replaces much or too little and the cushion is Have you ever looked at your caster the traditional caster spacer in-between less effective. Over the years, a growing axles — that space between the caster Frog Legs forks and casters. Essentially, market has desired some sort of pressure and the fork — and seen the rat’s nest the Frog Shield encapsulates the bearing, gauge, and ROHO has now delivered in of tangled, fur-like material intertwined shielding it from debris. An additional an all-encompassing way. The new Smart with your caster bearings? Carpet fiber, benefit is that because Frog Shields keep Check system, available on ROHO HIGH- pet and human hair, thread and more your bearings clean, gunk doesn’t fling and ROHO MID-PROFILE cushions, takes has an uncanny way of winding itself onto your casters, keeping your casters the guesswork out of setting the right around your casters’ axles. It not only cleaner, as well. pressure, as well as maintaining it. creates an unsightly clump of yuck, Frog Shields retail for $29.99 for a set ROHO Smart Check is a handheld it also works its way into your bear- of four and are compatible with both new monitor that clips on and off of a special ings, first creating drag, and eventually and existing Frog Legs brand forks and valve on new compatible cushions. For casters from sizes 3 to 6 inches. setup of a cushion, Smart Check has a red and green light. First you inflate ROHO Smart Check: the cushion until the overfill light is Maintaining Perfect Pressure red. Seated on the cushion, you let air ROHO air floatation seat cushions have out until the light turns green, noting been recognized as an industry leader in optimal air pressure. Smart Check then pressure management for four decades. remembers this setting. By checking After all, the concept of “immersion” the hand control daily, you can ensure that allows pressure points to sink into a you’re still in the green; however, if opti- surface — while surrounding areas are mal air pressure drops, a red light alerts supported — is among the surest forms you to add more air. The result is that of pressure management, and that’s what Smart Check allows you to properly fit a ROHO cushion accomplishes. and monitor your ROHO at all times. As life-changing as ROHO cushions Smart Check adds approximately $150 have proven for those at risk for pressure to compatible ROHO cushions, but pays sores, the downside has been achieving for itself, so to speak, in reliable pressure the exact, optimal air pressure — too management and peace of mind.

48 NEW MOBILITY Quickie 5R: Max Adaptability to full suspension; and, sling upholstery performance for adaptability. In the world of high-performance to rehab backrests. The list goes on Coded as a K0005 by insurers, the ultralight wheelchairs, performance and on, but 5R is truly among the most Quickie 5R is readily funded and among and adaptability are often at odds adaptable rigid ultralights on the mar- the best options if you need exception- with each other. You can have a high- ket, where you don’t have to sacrifice al adaptability in a high-performance performance ultralight that’s not very ultralight. adaptable, or an adaptable ultralight that’s not very high-performance — but No Innovation Too Big or Small finding both is difficult. Indeed, after 40 years, the innovations The new Quickie 5R strives to combine just keep coming. Some are big, like a a high-performance ultralight with maxi- highly-adaptable ultralight. Some are pro- mum adaptability. found, like an air cushion monitor to pre- The 5R starts with a hydro-formed, vent pressure sores. And, some are small, mono-tube frame that weighs like a shield for keeping the gunk out in at a scant 21.5 pounds base of your casters. All, however, improve weight, complete, making it a the quality of our lives — and that’s great high-performance ultra- what true innovation is about. light. From there, what sets the 5R apart is its adaptability. If Resources you have a higher-level SCI or • Frog Shield, Frog Legs, 800/922-2129; disability, you can add virtually www.froglegsinc.com any option you may need. • Smart Check, ROHO, 800/851-3449; You can go from side www.roho.com guards to full armrests; • Quickie 5R, Sunrise Medical, 800/333- ultralight wheels to 4000; www.sunrisemedical.com power assist; fixed frame

Drive everywhere with both hands on the wheel!

Digital Accelerator Ring

- Lifetime warranty. - Free at home pick- up and delivery and free at home service Visit us at all Abilities Expo DARIOS is VA www.kempf-usa.com - Call: 1-888-4-KEMPF-US (453-6738) for a free DVD and free brochure. accepted.

SEPTEMBER 2015 49 PARA/MEDIC Total Shoulder Replacement in Wheelchair Users

By Bob Vogel

Q. I’m 62, in my 40th year as a T4 complete in pain and no medical complications, and para, and my active life has taken its toll on all were able to do their own transfers and my shoulders, especially my left one. An MRI push a manual chair. shows severe cartilage wear, and the ball Dr. Benjamin DuBois, shoulder surgery and socket are bone on bone, which causes specialist at Grossmont Orthopaedic excruciating pain from something as simple Medical Group in San Diego, Calif., has as brushing my teeth. It’s so bad I can’t sleep. done about 650 shoulder replacements My orthopedist recommends a procedure in his career, five on wheelchair users. His called a reverse total shoulder replacement. outcomes are on par with McFarland’s. I’ve only found two small studies on shoulder Both surgeons say if the rotator cuff is in replacement in wheelchair users, and neither good condition, a standard TSA works addressed functional outcome. If I have the well, but with rotator cuff damage, an surgery, what is the recovery time? After because they often have damage in the RTSA is in order. rehab, will I be able to transfer on my own? rotator cuff — muscles and tendons that Both surgeons agree that shoulder Will I be able to push a manual chair? surround the shoulder — and a TSA relies replacement surgery in a wheelchair user — Debbie on the rotator cuff to hold the ball socket is a serious endeavor to be considered only in place. Rotator cuff damage can lead to when all other options have failed. “When ebbie, you are not alone in looking unsupported areas that allow the TSA to a wheelchair user comes into my office, for information in this area — of fail in two ways — it can dislocate or the it is because there is something terribly the little information out there, damaged rotator cuff can put uneven wrong with their shoulder,” says DuBois. much is outdated. For answers I stress on the plastic socket, which can “I tell them if they are still able to function, turnedD to Dr. Edward McFarland, profes- cause it to loosen. it is best to wait. If the pain gets to the sor and director of shoulder and elbow According to McFarland, a reverse point they can’t sleep at night, I discuss surgery at the Johns Hopkins School of shoulder replacement (approved by the the risks and the rehab process — the key Medicine. In March 2015, Johns Hopkins FDA in 2004, also called a reverse total is understanding this. Then I say ‘I can fix submitted a study on shoulder replace- shoulder arthroplasty), “has been a god- this as long as you understand the risks.’” ment surgery on six wheelchair users send for wheelchair users because it can McFarland and DuBois both emphasize ranging in age from 44 to 81 years, with address rotator cuff damage.” In a RTSA the importance of finding a specialist who follow-ups from one to three years. the ball and socket structure is reversed performs 50 or more surgeries a year and/ A standard total shoulder replace- for greater stability. The ball is attached or comes highly recommended. The pro- ment — known as total shoulder arthro- to the scapula, instead of the humerus, cedure takes two or three hours. plasty — consists of cutting off the ball via screws, and an area of porous material Within a couple of days of surgery the located on the end of the humerus that bone grows and bonds with, and the arm can be used for non-weight bearing (upper arm bone) and replacing it with socket fits on the end of the humerus via a tasks like typing on a keyboard. For a stan- a metal ball attached to a stem that fits metal stem (see above image). dard TSA, no weight bearing is allowed into the humerus. The socket, located in The downside of RTSA is it requires a for six to eight weeks. Using a power chair the scapula (shoulder blade) is replaced longer recovery because the bone needs and staying at a care facility, typically a with a plastic socket held in place with a to grow into the prosthesis and there is no nursing home that provides transfers to special cement. long-term data on how they perform. In bathing and bowel care, is recommended. McFarland explains that traditional the Johns Hopkins study, all six wheelchair McFarland says that for an RTSA, the recov- TSA is a challenge in wheelchair users users had RTSAs with significant decrease ery period until transfers are allowed is

50 NEW MOBILITY three months. You should not move your both shoulders were severely arthritic to do her own transfers and push her arm behind the plane of your body — as in and the rotator cuffs were shredded manual chair for short periods of time putting on a jacket — for six months. Both due to lack of joint space. around the house, but uses a power surgeons agree that once initial healing In mid-April 2015 Brown had a chair most of the time. Now pain in her has taken place, self-transfers and pushing reverse shoulder replacement on her right shoulder is causing her to consider a manual chair can start at a pace dictated left shoulder at St. Agnes Medical Center having it replaced later this year. by how long it takes to regain strength in in Fresno, Calif., by a surgeon who has atrophied arm and shoulder muscles. been doing the procedure for 10 years. In both doctors’ experience, after Resources “Now, three months after surgery, I’m recovery and rehab, wheelchair users with • SmartDrive, 800/637-2980; pleased with the results,” she says. a shoulder replacement are able to do max-mobility.com “The main plus of the surgery is a huge • Spinergy ZX-1, 760/496-2121; www.spin- their own transfers and push a manual ergy.com/catalog/zx1_power_add_on.php chair. However, both recommend using decrease in pain.” She is home and able a power chair because shoulder replacements aren’t designed for the constant wear of pushing a manual chair — they are mechanical, so they will eventually wear Do you Believe in Magic? out. This is where power assist units like a SmartDrive or, for higher level injuries, a Spinergy ZX-1, can be shoulder savers, Bowel & Bladder Basics are our Business! enabling a person to stay in a manual chair and reduce wear on a shoulder replace- Urological Supplements Suppositories ment (see resources). Tim Davis, 66, a Vietnam veteran, Cran Magic + ™ The Magic Bullet™ became a double above-the-knee ampu- bladder, kidney & urinary health. safe & sure! Faster acting, tee in 1968. Although Davis has huge water soluble suppositories. shoulder muscles and healthy rotator annose agic™ cuffs, 40 years of wheelchair sports wore M M maintain a healthy urinary tract- flush Bowel Supplements out his shoulder cartilage. “My right shoul- away E.coli. agic leanse™ der got so painful that I couldn’t lift my M C promotes fuller movements hand up to wash my hair,” he says. with greater ease In 2007 Davis had a total shoulder (and less time). replacement, but after two years he still couldn’t reach up to shave. His VA doc sent him to Ann Arbor, Mich., where Dr. Enzyme Magic™ Bruce Miller X-rayed the shoulder and said better digestion= better elimi- the stem and ball was put in crooked and nation. didn’t match up with the socket. “Dr. Miller re-did the shoulder, and now the arm works great,” says Davis. Although he did transfers within eight weeks, he says it took three and a half years to get to 100 percent, which for Davis means full range of motion, pushing his manual chair and extreme strength. Two years ago Davis had a total shoulder replacement on his left shoulder done Mention This * by Dr. Matthew Snyder at Fort Wayne Ad and Receive Orthopedics in Fort Wayne, Ind. “My left shoulder has great strength, but I still 5% OFF don’t have total range of motion — I can’t reach straight above my head yet, but I know that’s coming,” he says. www.conceptsinconfidence.com Jan Brown (pseudonym), 64, in her 43rd year as a T5 para, had shoulder 2500 Quantum Lakes Dr. #214 pain off and on for 20 years. It initially Boynton Beach, FL 33426 responded well to physical therapy and (800) 822-4050 rest, but over the past five years the *one time discount per customer pain became relentless. X-rays showed

SEPTEMBER 2015 51 ERVIN Having one’s butt wiped daily is a privilege, not a right. There’s nothing about it in the Constitution. I must learn to do without. By Mike Ervin

Doing My Patriotic Duty

n these times of economic auster- mess is because our financial priorities future looks bleak and they need guid- ity, we all have to make sacrifices. have been all out of whack for many ance and reassurance. I opened up IWell, you know me. The one thing years. Like for instance, the people the Good Book — and in the pages of I am first and foremost is a patriot. So who wipe my butt were paid a hefty Oprah’s magazine I was reminded that I’m ready to do my patriotic duty. $13 per hour while the owner of the the future is within my control if I only If we really care about the future football team barely made enough to have the courage to take charge. The we leave for our children, people who purchase a third yacht. This is simply first step is to identify the one thing need public assistance, like me, will not sustainable. I want to happen in my future more have to change our attitudes. The Fortunately, our new governor is a than anything else. I determined that public assistance I rely on is a program successful businessman and he knows the one thing I want to happen in my where the state pays the wages of what to do when financial priori- future more than anything else is to the crew of people I hire to come in ties are out of whack. He’ll put them have my butt wiped every day. The every day to wipe my butt, etc. But back in whack. And then everyone next step is to envision a way to make I know I have to accept the fact that will look at our state and say that our that one thing I want to happen more the public treasury is not a bottom- financial priorities are truly whacked. than anything else become a reality. less pit. The world doesn’t revolve Our new governor is a straight-talking All I could think of is to have a public around me. There are other people in man of action. When he saw that the assistance program where the state my state who are also in dire need of state didn’t have enough money to pays people to come to my house and public assistance, such as the owner pay its bills, he cut taxes, leaving the wipe my butt. of the local NFL football franchise. He state with even less money to pay its That envisioning stuff didn’t go needs a new stadium. The one he’s bills. I’m not sure how that works but well but that’s OK. Oprah’s magazine using now is obsolete. It’s nearly five apparently it does. All that big busi- years old. And football stadiums don’t ness stuff is waaaaay over my head. says it’s important to take a break grow on trees, you know. This new So I’m trying hard to change my from our troubles now and then by stadium will cost a billion bucks. And attitude and realize that in America, practicing self-love. Pamper yourself the owner insists that the taxpayers having one’s butt wiped daily is a by buying a new dress. So I tried that. pay for it all or he’ll take his team and privilege, not a right. There’s noth- It didn’t work. I was still a big ball leave town. And if that happens every- ing about it in the Constitution. But I of stress. I even tried executing the body will be pissed off at me for being admit I’m having a hard time making recipe for quick and easy papaya salsa so greedy and hogging up all that the adjustment. I can’t help but worry on page 468. Nothing . public assistance money. that the day is coming soon when no Clearly there’s something wrong with I have to face facts. I must learn to one will be around to wipe my butt. me. Maybe I don’t love myself enough. do without. My state is in a financial Faced with this pressing anxiety, I did I have to work harder at changing my mess. And the reason we’re in this what millions of people do when the attitude. It’s my patriotic duty.

52 NEW MOBILITY MARKETPLACE

NEW SEATING!

• Pressure relieving • Injection Molded foam • 25% better than ensolite • Outlasts steel or aluminum • Multi-configurable tub/shower/toilet • Options: Carry case, flat or commode seats, free standing leg support • Optional leg support shown on product above

• Ab Crunch • Single-dual curls • High bicep curl • Single & dual tricep pulldown • Tricep extension • Lat pulldown • Multi-level row NEW EXERCISES! • Bench & incline press • Pec fly • Dumbell pec fly + MORE

VA Approved • Limited Lifetime Warranty WWW.APEXEQ.COM • 800-851-1122

SEPTEMBER 2015 53

Apex_3.5x4.875.indd 1 9/2/14 4:05 PM holster-caddy NM mktplace_mm_346.qxd 8/23/2012 7:46 PM Page 1

MARKETPLACE

Ferti Care® Personal YOU CAN TAKE IT WITH YOU! & introducing the new Carry your phone, keys, personal VIBERECT items—even your iPad®, in these easy- to-access cases. No more bags in your lap or searching for lost items!

The HOLSTER Now your phone is VIBERECT always at hand: Swivel • Treats men with erectile dysfunction mount keeps it out of • Treats SCI men with ejaculatory dysfunction. the way, and swings out for easy access when you need it. Don’t miss JUMP START YOUR another call! SEX LIFE The CADDY Keep your wallet, FERTICARE PERSONAL papers—even your • The Ferticare personal treats men iPad with you. Easy with ejaclatory dysfunction and slide-out mount woman with orgazmic keeps it out of the dysfunction/ vaginal dryness. way except when • FDA approved/ VA approved. you need it. • Inexpensive alternative to fertility clinics. • Can also help with incontinence thru Kegel Exercise.

(Not FDA approved for sale inside the USA for incontinence) Visit our web site for complete Orion Medical Group, Inc. information about our products (Full D.M.E. Pharmacy Specializing S.C.I) “light, strong, and portable” Tel. 714-649-9284 / 1-888-64-ORION (67466) Fax. 714-594-4038 [email protected] www.nuprodx.com (855) 220-5171 www.medicalvibrator.com

Did Your Address Change ?

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

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

Please mail to: 120-34 Queens Boulevard, Suite 320 Kew Gardens, NY 11415 Or submit your request electronically to: [email protected] or at www.newmobility.com

Or call: 800-404-2898 x7203

54 NEW MOBILITY CLASSIFIEDS

FOR SALE FOR SALE Enhance your clothing choices! suit- $15,000 2001 35’ RV (5th wheel) acces- United Spinal Business Member Updates sonwheels.biz sible. Roll in shower. Willing to sell F250

FREE StimMaster, Orion Home/ pull truck (has lift) for $21,000 daliwong@ Clinical Ergometer, made be Electologic. yahoo.com 973-910-1812 Company has gone out of business. Allergan: On March 17, 2015, Actavis (NYSE:ACT) completed the acquisition of Allergan, creating a Photos available. The cycle is in new con- VACATIONS dition although it is close to 15 years old. unique, global pharmaceutical company among It has new stim cables but will need new Ocean-front condo, wheelchair the leaders in Growth Pharma. www.Actavis.com electrodes, which are easy to find. This friendly, sleeps six, pool, boardwalk to and www.Allergan.com cycle is an excellent way for complete beach. Rents daily, weekly, monthly. St. paras to exercise their quads, gluts and Simons Is., GA. [email protected] hamstrings. Pick-up only: Wilmington, Hollister Inc. responds to positive feedback to the 419-569-6114. Delaware - 45 min from Phila For more VaPro Plus™ hydrophilic intermittent catheter and info: [email protected]. Florida Keys! Accessible 2 /bedroom consolidates the product line to focus on this inno- Wanted --- Used Quickie II. 17” seat. Waterfront Home, Large Bathroom vative closed system catheter. www.hollister.com/us The older the better. lolitalark@yahoo. with Roll-In Shower. Spectacular View, Gold com Resort Amenities included. 561-627- Permobil’s 2015 PowerTrip is bringing 1941. www.placidaccess.com RT-300 FES BIKE - $9,000 manuals& you THE BEST IN MOBILITY! cables- 337-292-5255 - busdown2002@ On The Beach Los Cabos, Mexico http://permobilpowertrip.com/events/ yahoo.com Custom accessible Villa in the Village Wellspect HealthCare is offering FREE samples of USA Jeans makes pants designed for sit- of Los Barriles, Walk/Roll to restaurants, ting. Call Darlene at 800-935-5170 or visit shops, markets. Watch Whales and LoFric catheters, proven to improve short- and long- www.USAJeans.net Dolphins. Swim, snorkel and fish, right term urethral health. 855/456-3742, www.wellspect.us out your back door. The Villa is com- Jump start your sex life and get pletely wheelchair accessible boasting expert advice at medicalvibrator.com or a huge roll-in shower & roll-under sinks. call 714-649-9284 we also specialize in fertility and incontinence. Monthly, weekly, or short term vacation rental. U-Tube Virtual tour! https://youtu. Numotion: Join Numotion in celebrating the 25th 40’ ft. 2000 Beaver Patriot Motor be/yN5chLwlJvI Voted “Best Accessible anniversary of the Americans With Disabilities Home NEW Low Price! Immaculate – Vacation EVER” (by those who stay here). REALLY LOADED!!! – only 84,000 miles! Visit www.vrbo.com/434500... read the Act! www.numotion.com/news-resources/blog/ LIKE NEW, ONLY $70,000. 2 slide outs, Bronze reviews! NEW! For larger groups or wed- Caterpillar Diesel, Pusher 3126B Truck Engine, SuperArm, Roll-In Shower / HC dings www.vrbo.com/669234.... 7,000 sq Bathroom, Hand Controls & Digi-Pad. ft! 2 roll-in showers, all accessible! 1-866- Call or e-mail for any additional info and 727-7986 (toll-free) Supporters pictures. Cell (951) 218-4023 ~ Ask for William. Email: [email protected] Coloplast Accessible Journeys The Comfort Company Slightly used GO-Anywhere commode/ making the world more shower chair. $800. Includes Carrying accessible since 1985 case. Woody 903-277-2301. DiMarco Araujo Montevideo Attorneys at Law Holland’s Spring Tulips KD Smart Chair Antique Harley Davidson with hand Rhine River Cruises controls. 1965 Electra glide FLH with Barcelona & Madrid Michigan Auto Law matching side car. Restored several Venice & Ljubljana Mobility Funding Group years ago. 90% original with electric Accessible Italy by train start. 3 speed with reverse. Hand shift Vietnam-Thailand-Cambodia on gas tank. Hand clutch and brakes. Scootaround Kenya-Tanzania-Zambia-South Africa Wheelchair fits in side car. I’m a T-8 para- Sleepsafe Beds plegic complete. I have been riding this 800.846.4537 bike for 20 years. $25,000. Serious inqui- www.accessiblejourneys.com Surehands Lift & Care Systems ries only. Phone 563-259-4428. Located in Iowa. Please leave a message. Synapse Biomedical

Permobil X850 Trax Corpus for sale. ADDRESS CHANGE For more information on how you too can support United Call for details 718-642-6420 Change your address? If so, please pro- Spinal and become a business member, please contact Berkel Bike – Cycling for All – a hand- vide New Mobility with your updated Megan Lee at [email protected] or 718/803-3782, cycle that allows propulsion from both information. Full Name, Street Address, ext. 7253. arm and/or legs, allowing riders to get City, State & Zip Code are needed for maximum benefit of pedaling within both the old & the new address. Please Acknowledgements on our website, in New Mobility, in all means. The sit is high for maximum United Spinal e-news or any other United Spinal publication allow 6-8 weeks for this change to be should not be considered as endorsements of any product stability and easy access. Excellent condi- processed. Please submit your request or service. It is the individual’s responsibility to make his tion, used only once. Located in NYC. electronically to: mkurtz@unitedspinal. or her own evaluation of such. To see a complete listing of Call: 917-821-5773 or e-mail: akg1948@ United Spinal business members, visit www.spinalcord.org/ nyc.rr.com. Bought new for $5,400 and org or at www.newmobility.com Or call: resource-center/nscia-business-members. selling for $4,000 800-404-2898 x7203

SEPTEMBER 2015 55 CRIP BUZZ THE BEST OF DISABILITY BLOGS AND BANTER

GOOGLE CELEBRATES ADA Web giant Google celebrated the 25th anniversary of the Americans with Disabilities Act on its home page, in video and by painting portraits of movement icons on staircases throughout Washington, D.C. That last one raised some eyebrows since steps aren’t exactly a symbol of universal access. Google explained it was in homage to the iconic “Capitol Crawl,” the last-minute push of ADAPT on the eve of the law’s passage when activists abandoned their wheelchairs and pulled themselves up the Capitol steps. Well done, Google, and thank you: google.org/impactchallenge/disabilities/ada.html. Photo courtesy of The National Portrait Gallery

Clockwise from left: Justin Dart, Judith Heumann, Tom Harkin, President George H.W. Bush

Photos courtesy of Google

56 NEW MOBILITY NewMobility_ROHOSmartCheck_fullpagead.pdf 1 7/14/15 2:28 PM

Smart Check™ by ROHO® Means Independence and Peace of Mind We listened to what you wanted in the next generation of ROHO cushions, and developed Smart Check for maximum skin and soft tissue protection! With Smart Check, clinicians set and save their recommended inflation setting for your needs. Then, with the simple push of a button, you can check your inflation - whenever, where ever and as often as they like.

CONFIDENCE, INDEPENDENCE & PEACE OF MIND:

Smart Check monitors your ROHO cushion with the push of a button, so you can be confident and stay within your clinicians' recommendation.

M Smart Check takes the guesswork out of using your ROHO Y cushion, and there's no limit to how often you can check, CM so you can always feel secure. MY CY 89% of field study participants said they were more CMY confident they were using their ROHO cushion properly K with Smart Check.

Be confident and in control with Smart Check. Call today to find a ROHO provider near you! 800-851-3449 | roho.com/smartcheck We Are You.

Jim Black TiLite Director of Western Sales Operations

WE USE THE CHAIRS WE BUILD. Listen to Jim and the TiLite team talk about why TiLite’s TiFit wheeled prosthetics are so critical.

HEAR OUR STORIES. TiLite.com/TiFitStories