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ENTER ONLINE: ENTER BY PHONE: VMIVANS.COM 855-VMI-VANS (864-8267) CONTENTS VOLUME 28 NUMBER 285 June 2017

life beyond wheels FEATURES

19 CENTRAL EUROPE’S ACCESSIBLE GEM You never knew you wanted to go to Slovenia, but after reading LILLY LONGSHORE’s article, you may want to add it to your bucket list.

25 SIX YEARS, ROLLING STRONG As United Spinal hosts the 6th Annual Roll on Capitol Hill, IAN RUDER looks back at the event’s origins and how it has shaped the organization.

37 TEMPERATURE TANTRUMS Finding and maintaining the ideal body heat can be a wheeler’s worst nightmare. SETH MCBRIDE reports on ways to tame your termperature.

39 MAKING A DIFFERENCE A resilient nature and a passion for helping others have shaped Sebastian DeFrancesco’s life as a veteran, Paralympian, advocate and father. BY CINDY RANII

COVER STORY OUTDOOR RECREATION FOR EVERYBODY 28 Summer is finally here, and we’ve got great recreation ideas for everyone. Whether you’re looking to break a sweat, get back to nature, or simply chill and catch some rays, BOB VOGEL has you covered with kayaking, sailing, hiking, camping, handcycling and more.

Cover Photo by Derek Nunner/Telluride Adaptive Sports

DEPARTMENTS

4 BULLY PULPIT 15 EAT WELL, LIVE WELL 5 CONTRIBUTORS 16 HOW WE ROLL 6 LETTERS 46 MOTORVATION 8 NEWS 50 RAISING A RUCKUS 12 EVERYDAY ADVOCACY 55 CLASSIFIEDS 14 SCI LIFE 56 CRIP BUZZ BULLY PULPIT life beyond wheels JUNE 2017

NEW MOBILITY IS THE MONTHLY MAGAZINE OF

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

EDITORIAL My 15 Minutes of Fame as a Whoopee Cushion PUBLISHER: JEAN DOBBS Playing the part of a Whoopee cushion is on my head with loud slapping sounds. Sadly, not something you wake up one day and I never missed a beat, so we lost by a hair. EDITOR: TIM GILMER just decide to do. It takes years of hard work, There were other Untalent Nights, like MANAGING EDITOR: JOSIE BYZEK SENIOR EDITOR: IAN RUDER conditioning and discipline before you are the time I disappeared inside a giant chicken SENIOR CORRESPONDENT: BOB VOGEL ready to make that kind of commitment. OK, costume, wheeled on stage and sang “Some you might do it impulsively for a Halloween Enchanted Evening” in my most ludicrous making travel easy for individuals with spinalEDITORIAL cord disabilitie SUBMISSIONS:s [email protected] party or in a bar on a drunken dare, but never for a church event, on stage, right? Dressed in drag and lip-synching It all started when I decided to become badly, we were “Diana Gross and CUSTOMER SERVICE a competitor in an annual night of humilia- tion, chutzpah and all-out craziness called the Testosterones.” Again, no Toll-free 800/404-2898, Fall Untalent Night, put on by my church. In ext. 7203 my first Untalent Night performance, more trophy, but the brave pastor got than 20 years ago, I played a ventriloquist. plenty of flack. My 7-year-old daughter was my dummy — ADVERTISING SALES decked out in a fluffy dress, face made up chicken voice. No trophy that time, either. Or 718/803-3782 with large freckles and a square wooden the time I conned the pastor and associate NATIONAL SALES MANAGER: jaw. She sat on my knee and flapped her jaw pastor into joining me in a send-up of the iconic MEGAN LEE, EXT. 7253 when I squeezed the back of her neck with singing group, The Supremes. Dressed in drag AD MATERIALS: my hand. What came out of her mouth was, and lip-synching badly, we were “Diana Gross DEANNA FIKE, EXT. 7250 of course, my voice. It was the perfect setup and the Testosterones.” Again, no trophy, but PRODUCTION to make jokes about the church bigwigs. the brave pastor got plenty of flack. Visually, I wasn’t the one doing the skewering. As strange as these gigs were, they were PRODUCTION MANAGER: DEANNA FIKE It was my 7-year-old dummy-daughter. But just a warm-up to my Whoopee cushion CIRCULATION she got the last laugh by producing a pie tin performance. The target of my skewering this filled with whipping cream and smashing it time was the fall election campaign media CIRCULATION MANAGER: in my face. onslaught with its seemingly neverending BEVERLY SMITH On another Untalent Night, I parodied the negative ads, empty promises, and bombast. CIRCULATION COORDINATOR: then-current stage sensation, Riverdance. I rolled on stage in my Whoopee cushion MARIA KURTZ Since the winner of the Untalent Night con- costume and in my most serious voice POSTMASTER: Send address changes to New Mobility, 120-34 test is always the act with the least talent, my proclaimed that I was there to comment on Queens Blvd, #320, Kew Gardens NY 11415. Subscription rates: $27.95/year; $35.95/year in Canada; dance troupe consisted of teenage girls with the current election. After a dramatic pause, $67.95/year international via airmail. barely passable dance skills wearing clunky, I took a deep breath, then very loudly (and New Mobility (ISSN 1086-4741), Volume 28, Issue 285, is oversized rubber boots. “Rubberdance” amazingly on-key) began mouth-farting the published monthly by United Spinal Association, 120-34 Queens Blvd, #320, Kew Gardens NY 11415. didn’t win that year — we were just a wee bit grandiose finale of “Stars and Stripes Forever.” Copyright 2017, all rights reserved. Reproduction without too talented. Perhaps because I donned an I finally went home that night with the permission of any material contained herein is strictly prohibited. We welcome comments; Irish green bathing cap and sat on stage in grand prize: a gold-painted, 3-foot-long zuc- we reserve the right to edit submissions. my wheelchair with the clomping girls and chini. Periodicals postage paid at Flushing, NY and additional mailing offices. pounded out the typical Irish stepping beat — Tim Gilmer www.newmobility.com

4 NEW MOBILITY CONTRIBUTORS life beyond wheels JUNE 2017

CONTRIBUTING One of the original NM freelancers, Michael Collins, injured EDITORS in 1988 at C5-7, wrote his first article for New Mobility (then MICHAEL COLLINS called Spinal Network Extra) in 1991. Since then he has distin- MIKE ERVIN guished himself as executive director of both the California ROXANNE FURLONG State Independent Living Council and the National Council on RICHARD HOLICKY Disability. His championing of disability rights and indepen- PRISCILLA MALTBIE dent living have been a constant for nearly 30 years. He is also ALLEN RUCKER the only NM freelancer who pens two columns — Everyday Advocacy and Motorvation (as “Uncle Mike”). He lives in the ROBERT SAMUELS state of Washington. ERIC STAMPFLI ELLEN STOHL BOB VOGEL

Besides being a New Mobility contributor, Cindy Hall Ranii is a lifelong LOREN WORTHINGTON athlete, retired superintendent of public schools and grandmother of 12. She was paralyzed at the T3 level from an onset of transverse myelitis 11 years ago and subsequently took up table tennis. She will be competing in November in the Para PanAmerican Championships in Brazil. Active in expanding the sport for everyone, COMMUNITY PARTNERS she was recently honored by the City of Santa Cruz as a Volunteer KIM ANDERSON of the Year for her efforts. To celebrate her 70th birthday in May, she CHRISTIAAN “OTTER” BAILEY played 70 games of ping-pong on the same day. MARTY BALL TIFFINY CARLSON LAWRENCE CARTER-LONG Allen Rucker has been a contributing editor and columnist RORY COOPER with New Mobility since 2008. He is the author or co-author of JASON DASILVA 13 books, including a memoir of paralysis, The Best Seat In The DEBORAH DAVIS House: How I Woke Up One Tuesday and Was Paralyzed For Life. TOBIAS FORREST Rucker and his wife, Ann-Marie, are featured in Option B, by JENNIFER FRENCH Facebook COO and best-selling author Sheryl Sandberg, and the ALLISON CAMERON GRAY Optionb.org website. He is chair of the Writers Guild of America MINNA HONG Writers with Disabilities Committee and lectures widely on dis- MARK JOHNSON ability issues. He lives in Los Angeles. GARY KARP NANCY BECKER KENNEDY BRITTANY MARTIN Sheri Denkensohn-Trott, a C4 quadriplegic from a diving acci- LINDA MASTANDREA dent at 16, is an attorney, disability advocate, writer, speaker and LYNN MURRAY New Mobility blogger. Throughout her 25-year tenure as a lawyer ASHLEY LYN OLSON for the federal government, Sheri advocated for individuals with TEAL SHERER disabilities in the workplace, the community, and as a board TARI HARTMAN SQUIRE member at her local CIL. She and her husband, Tony (who also MITCH TEPPER has a disability), own Happy on Wheels, a company whose mis- REVECA TORRES sion is to inspire people — with and without disabilities — to ANTHONY TUSLER live happier lives. Sheri resides in Arlington, Virginia. You can learn more at www.happyonwheels.com. KARY WRIGHT

JUNE 2017 5 LETTERS life beyond wheels Travel: Affordable Getaways

Kyle Walsh: Friday Night Lights I constantly recommend Practicing Law on Wheels Washington, D.C., as the most The Truth about Aging

accessible city. newmobility.com APR 2017 $4

Washington, D.C. – Super Accessible spine). I do what I can, as I have no other Finally, Respect Mount Rushmore has been on my bucket caregiver other than my loving wife, but no My late wife and I wanted to have dinner at list for years, so I’m happy to see that it’s longer take as many risks. a new place, but they wouldn’t let us make accessible [“Great American Getaways,” Andy ET Smith (from South Africa) a reservation. When we got there, they April 2017]. Also, I constantly recommend via newmobility.com seated us in an elevated area [“Restricted Washington, D.C., as the most accessible Access to Tables"]. Halfway through the city in America — and maybe the whole Coach Kyle meal my wife needed to use the restroom, world. One other attraction I’d recom- He was the best football coach I ever had so we carried her down stairs to the bath- mend to visit in D.C. is the U.S. Bureau of the opportunity of knowing and learn- room. I complained to the manager, and Engraving and Printing. You get to actually ing from [“Rolling Under the Friday Night he comped everything we ate or drank and see how money is made. It’s pretty over- Lights,” April 2017]. asked if we could come back in the morn- whelming to see so much money, and they Jess Farnsworth ing. It seemed odd (coming back before it offer a completely accessible tour. via newmobility.com opened) but it turned out to be a staff train- Cory Lee (CurbFreeWithCoryLee.com) ing session. The manager laid down the via newmobility.com Role Model law to employees that disabled patrons can Coach Kyle Walsh was the first coach we absolutely reserve an accessible table, no Aging Sucks met when we moved to College Station, questions, just cooperation. That was the I would say at age 60, aging with a disability Texas, and from that point on, I knew I one and only time that anyone had treated can really suck. [“The Truth About Aging,” wanted my boys to play for him and this us with so much respect. April 2017]. My breathing is getting worse, team. This great article confirmed what I Andre E. Senay my bones ache, and I can’t sit up as long as I already knew: Coach Walsh is a great role via newmobility.com once did. One shoulder is shot and bad pain model and inspiration. is part of my daily life. I do not have a spouse, Christine Wixson CBD Pot Works but I pray frequently and rely heavily on my via newmobility.com I have been using Fentanyl patches and two dogs to give me unconditional love and Baclofen for years, and I worry about support that dogs do so well. No, I haven’t Respect? Not My Experience being addicted to the patch [“More learned to navigate the rough waters. Some HA! Been there, done that … on a local Neuropathic Pain Meds,” April 2017]. days the waters are more placid, while other accessibility campaign for about six or so However, about six months ago I started days are like riding rapids. And for me, one years — emailing, calling or talking to a using topical and edible CBD [marijuana] day the question will become quantity ver- manager [“Restricted Access to Tables,” products and found that they are great sus quality. I will never go to a nursing home. Everyday Advocacy, April 2017]. My con- — with no side effects. I also have used I decided that long ago. cerns get paid lip service or I get an occa- CBD transdermal patches and they work Ines Gaudet sional gift card to keep me happy, but no as well. The cost is a little high, but well via newmobility.com long-term results. Restaurant personnel worth it. CBD and hemp oil products are seem genuinely surprised to know about the available from numerous companies, such Support All-Important ADA and tables. I’ve had to sit as far away as as Miracle Smoke and Healthy Hemp. I also I notice that a common thread is a good a foot from a table before — pretty hard to have phantom pain from a left below-the- loving spouse [“The Truth About Aging”]. eat that way. I’ve learned some ways to be knee amputation since 2013, as well as This is hugely important. I am 40 years post- better accommodated, but it sure would be diabetic neuropathy in my right leg/foot. injury, C5 complete, 56 years old. I have nice if more places were accessible. Frankly, Topical CBD cream from Miracle Smoke been happily married for over 32 years. I the most accommodating establishments works best for me, as it relieves all of my still drive myself with no assistance, I am are fast food restaurants. breakthrough pain issues quickly. fairly healthy (just the expected develop- Michele Linn Ash Tom Alsup ment of osteoporosis and deterioration of via newmobility.com via newmobility.com

6 NEW MOBILITY INDEPENDENCE

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Newly Passed AHCA Dangerous AARP issued statements denouncing the to People with Disabilities bill soon after it was passed. United Spinal On May 4, House Republicans passed a Association issued a news release on May revised version of the American Healthcare 8 condemning the AHCA, arguing that the Act by a 217-213 party-line vote. The revisions would allow states to cut people revised bill, voted on before it could be with disabilities from the general insur- scored by the Congressional Budget Office, ance marketplace. now moves to the Senate, where it is “The AHCA will hurt people with dis- expected to undergo major changes. abilities through higher health care costs, The revised bill keeps most of the core less coverage, and a greater risk of institu- tionalization,” said James Weisman, presi- tenets of the previously failed House bill, Jered Chinnock, who has a T6 motor-complete e.g., replacing income-based subsidies with dent and CEO of United Spinal. “Critical spinal cord injury, has regained some function. fixed tax credits based on age, distributing services such as personal care, mental Chinnock attempting volitional leg move- federal Medicaid funding based on a per- health treatment, prescription drugs and capita rather than cost-based system, and rehabilitation services should also not be ments while researchers tuned the settings no longer requiring Medicaid to provide cut to save money.” of the stimulation device. a minimum of “essential health benefits.” In the first two weeks of epidural stimu- For a summary of how the base provisions Epidural Stimulation Trial Enables lation, with the device turned on, Chinnock of the AHCA affect people with disabilities, Movement and Stepping was able to: see NM’s March News. On April 3, the Mayo Clinic published the • Control his muscles while lying on his Under current law, insurers are required results of a new trial that further validates side, resulting in leg movements to accept people with pre-existing con- the effectiveness of epidural stimulation for • Make step-like motions while lying on ditions without charging them higher functional improvement in spinal cord inju- his side and standing with partial support premiums. Under a revision to the AHCA, ry subjects. In this trial, a 26-year-old man, • Stand independently using his arms states would be able to obtain a waiver to three years out from a motor-complete on support bars for balance this requirement but would be required to SCI at T6, regained volitional motor func- Previous trials had produced standing set up “high-risk pools” for those with pre- tion below his injury level while using an and some volitional movement of lower existing conditions. Insurers would have implanted epidural stimulation device. The limbs while reclining, but only after 17 no upper limit on premium charges for the study sought to replicate results of a previ- weeks of stimulation and motor rehabilita- high-risk pools. A last minute amendment ous epidural stimulation trial conducted at tion. The Mayo Clinic trial marks the first added $8 billion dollars in funding to the the University of Louisville. time a subject has been able to voluntarily Patient and State Stability Fund, which is The Mayo Clinic trial began with the make step-like movements while standing partly aimed at defraying costs within the subject, Jered Chinnock, undergoing 22 with partial support. high-risk pools, but as The Atlantic noted weeks of three times per week locomo- “We’re really excited, because our in its analysis of the policy revision, this “is tor and task-specific strength training. results went beyond our expectations,” likely a drop in the bucket.” Following the initial period of motor says neurosurgeon Kendall Lee, M.D., Revisions would also allow states to training, surgeons implanted an epidural Ph.D., principal investigator and direc- define what “essential health benefits” stimulation device made by Medtronics tor of Mayo Clinic’s Neural Engineering insurance plans are required to cover. and FDA-approved for pain (with off-label Laboratory. The preliminary results show States could allow insurers to offer bare- approval for functional rehabilitation pur- functional return only while the epidural bones coverage policies to help keep costs poses) and connected it to an electrode stimulation device is turned on. Previous down, which could in turn affect employer array positioned on the dorsal epidural studies have shown that after prolonged plans that use individual plans as bench- surface of the lumbosacral spine. After therapy, some volitional control of previ- marks for the coverage they provide. three weeks of post-surgical recovery, the ously paralyzed muscles remains even The American Medical Association and team began epidural stimulation — with when the stimulator is turned off.

8 NEW MOBILITY Photo courtesy of the Mayo Clinic disabled customers.” was “committed toservingtheneedsof spokeswoman, said inastatementthatit lawsuits, butBethDeFalco,anagency dangerous anddegrading.” stairs inmywheelchair.It’snerve-wracking, have toaskstrangerscarryme upthe of service,I’mstuck.IneverknowwhenI’ll Goldensohn. “Andifjustoneelevatorisout mute time,atbest,saysplaintiffSashaBlair- “The lackofelevatorsdoublesmycom violates theAmericanswithDisabilitiesAct. to maintainoperableelevatorsandlifts mode oftransportationintown.” provides themostefficient,economical the subwayiscrucialtoeverydaylifeand equal access.AseveryoneinNYCknows, “This isamajorviolationoftherightto of litigationforDisabilityRightsAdvocates. frequently,” saysMichelleCaiola,director And thosethatdoexistbreakdowntoo because therearenotenoughelevators. stairs, areessentiallyblockedfromitsuse wheelchairs, andotherswhocan’ttraverse contest system-wideinaccessibility. plaintiffs saythestatelawsuitisfirstto the NewYorkCityhumanrightslaw.”The not navigatestairs,“aflagrantviolationof stations areunusabletopeoplewhocan problem: Over350NewYorkCitysubway city’s agingsubwaysystem. many elevatorsandelectricliftsacrossthe with disabilitiesbyfailingtomaintainthe and thatMTAdiscriminatesagainstthose way stationsarewheelchairaccessible, allege thatonly112ofthecity’s472sub ability groupsandthreeindividuals.They Advocates onbehalfofacoalitiondis courts inManhattanby were filedinbothfederalandstate Authority onApril25.Thecomplaints filed againsttheMetropolitanTransit according toapairofclassactionlawsuits accessible subwaysysteminthenation, New YorkCityhastheleastwheelchair for DisabledAccess NYC SubwaySystemSued The MTA will not comment on the The MTAwillnotcommentonthe The federallawsuitallegesthatfailure “Around 6millionpeoplewhouse The statesuitchallengesachronic Disability Rights Disability Rights

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Virginia Chapter: Changing the Face of Rehab in the Mid-Atlantic Region When two of the largest health systems in Virginia announced they are collaborating to build a state-of- the-art, 114-bed, $119 million rehabilitation hospital just outside Richmond, there were smiles all around the room, but perhaps no one had a bigger smile than Sharon Drennan, the executive director of the Virginia Chapter of United Spinal Association. That’s because Drennan knew that in addition to dramatically upgrading the rehab options for the region, the new facility would revolutionize her chapter’s ability to connect with and help the local SCI/D community. Simply having a state-of-the-art facility in the chapter’s backyard would have helped some, but Drennan and other chapter leaders had been working with VCU An artist’s rendition illustrates plans for a state-of-the-art rehab hospital near Richmond, Virginia. Health and Sheltering Arms, the two health systems, for months to plan the new project, and one of the CEOs Atlantic region — not just Virginia — will have a place to go, so had personally told her they were planning to have a space we don’t have to go to Atlanta or Colorado.” for her organization in the new facility. The hospital is expected to open in 2020. “I was just thrilled,” recalls Drennan. “Now we’re going to be For more information about the chapter, visit www. connected to the [people with] new injuries at the time they unitedspinalva.org. really need us — we’ll be right there.” The chapter already offers peer mentoring and support Louisiana Chapter: 10 Years of Conference Growth groups for people with injuries and their families, but Drennan The Brain Injury Association of Louisiana hosted its 10th annual worries that many people fall through the cracks in the transition conference March 10-11 in Kenner, Louisiana, for a record turn- from the hospital. out of 220 professionals, caregivers and SCI survivors. This year, “We hear a lot of people say, ‘I wish I would have known for the first time, the organizers split the conference into two about you when I was in rehab. Where were you then?’ If we’re tracks, one for SCI and one for brain injury, reflecting the chap- connecting to families earlier in the process, we might be able to ter’s dual-natured clientele. alleviate a lot of headaches and questions,” she says. “I think it was a very positive way to wrap up our first 10 years The chapter played a vital role in establishing the need for the and make it bigger and better going forward,” says Kimberly Hill, facility and shaping its offerings. Drennan and members Richard the chapter’s director of outreach and resources. Bagby and Cole Sydnor attended multiple envisioning meetings This was Hill’s first time coordinating the conference, and the and repeatedly testified about their own personal experiences. second conference since BIALA became the official Louisiana chap- “VCU and Sheltering Arms started talking about it and came ter of United Spinal. “I think the partnership has been great,” says to us because they wanted to hear the stories about why we Hill. “I appreciate that whenever I call anyone, they call back right were going out of state when somebody was newly injured,” away. It’s really refreshing and helpful.” says Drennan, whose son, Rob, did his rehab at Kennedy Krieger With the conference complete, Hill and the chapter can turn Hospital in Baltimore. “What was happening was people with their focus to growing their program offerings. This July, the chap- new injuries would be at VCU for the trauma piece, then they’d ter is hosting a peer mentor training session, and staff is working leave the state for inpatient rehab and then come back and do on partnerships with established recreation programs in the area. their outpatient rehab at Sheltering Arms. The medical commu- “Rather than reinventing the wheel with our own recreational pro- nity was looking at that and asking ‘why?’” gram, we decided to reach out and partner up with groups who “The idea behind this collaboration is that folks in the mid- were already working,” says Hill.

JUNE 2017 11 EVERYDAY ADVOCACY

The Real Fear of Flying

By Michael Collins

Q. My niece is getting married on the opposite cially need to take extra precautions. Know able batteries. Request a seat with a mov- side of the country and I use a power wheel- how your mobility device operates and able armrest to make it easier to transfer. chair. Despite flying in the past, I now ques- where the different switches and connec- Arrive at the airport early, as it can take tion my ability to do so safely. We hear reports tions are located. Make sure it is powered an extra hour if a power wheelchair is about flights that were canceled, delayed by non-spillable or “gel cell” batteries. involved. Signing up for the TSA Precheck extensively, or people being removed from That will eliminate the need to remove program in advance will minimize delays departing flights for no apparent reason. I and repackage the batteries before flight for security screenings. Do not transfer cannot imagine what it would be like to be and help minimize damage. Obtain a note out of your wheelchair until you arrive forcibly removed once I had gone through the from the wheelchair vendor, on letterhead, at the door of the plane, and pre-board arduous process of preparing for the trip and stating that non-spillable batteries are in whenever possible. being transferred into a seat on the plane. use. The battery needs to be disconnected Remember, things can and do go Friends have shared incidents of exten- from operating controls during travel, wrong. Be prepared for weather delays, sive damage and temporary loss of use of which can also prevent damage. mechanical malfunctions or crew short- their mobility devices due to all kinds of mis- Label everything with your name, ages; carry extra medication and uro- takes. I really need my wheelchair to be in especially if removable, and know that logical supplies. All carriers must have a operating condition upon arrival and when whole mobility devices have been lost. If complaint resolution officer available to returning home, as I do not have a spare. an armrest or leg support can be removed, take complaints from passengers with My main concern is what needs to happen it is susceptible to loss or damage. Know disabilities about virtually anything that before and during the flight so my travel how to disassemble and reassemble your can go wrong. Point out immediately if experience does not turn into a disaster. I wheelchair. Insist that you or a trained equipment is damaged and follow up to could use some helpful advice. assistant must be present to supervise resolve the situation. If you are removed — Grounded, at least temporarily both of these processes. Travel with a roll from a flight, you must be provided with of duct tape or tie-down straps to secure a written reason for that removal in order any incidents can be prevented any loose items on the seat base — after to be able to file a complaint. with better advance planning stowing your seat cushion in the overhead The recent negative publicity about Mand knowledge of the Air Carrier bin. Remember, baggage compartments passengers being removed from aircraft Access Act’s regulations that govern pas- are usually full, and any flat surface will be has had one positive side effect: In the sengers with disabilities. Also, remember used for stacking; do not leave anything event that a flight is overbooked, some that you will be dealing with airline and protruding from your chair or it may be airlines have now raised the limit on the contracted employees who might have broken, removed or lost. amount of money that passengers can be limited knowledge of the rules but feel Also, prepare instructions on a sheet paid for voluntarily giving up their seats they have authority to make decisions that of colorful paper detailing how to set and to about $10,000. may or may not be in compliance. So you release your wheelchair brakes; attach it need to know the law and be prepared. The where it is very visible. The brakes will have Resources Federal Aviation Administration, a branch of to be released to roll it and load it into the • Accessible Air Travel booklet, www. the Department of Transportation, admin- plane, and then locked again as it travels up unitedspinal.org/accessible-air-travel-2 isters and enforces the ACAA. Fortunately, the baggage belt and into the cargo hold. It • Air Carrier Access Act, www. before booking, you can review its free also helps to label switches and controls. transportation.gov/airconsumer/ booklet, New Horizons: Information for the Air Some types of equipment require passengers-disabilities Traveler with a Disability. Also, United Spinal notification to the airline at least 48 hours • New Horizons: Information for the Air recently re-released its Accessible Air Travel in advance. It is also a good idea to advise Traveler with a Disability, www.transpor- booklet (see resources). the carrier that you will be traveling with tation.gov/airconsumer/new-horizons- Travelers using power devices espe- a mobility device powered by non-spill- information-air-traveler-disability

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M7558N SC-Flex-ThirdPartyAd.indd 1 3/6/17 2:17 PM SCI LIFE

By Tiffiny Carlson

A Cool Mobile Lift When you’re looking for robotic-like help “Surround yourself in the transferring department, there is a new, compact option on the market. Made with positive in Greece, the easyGo is small and light and people and be has sturdy wheels, so it can be taken out into the world. With only seven parts — open to trying which can be disassembled in minutes and new things.” fit in the back seat or trunk — the easyGo can also be used anywhere you can think of: with furniture, the bathtub, movie the- ater, traveling and beyond. It even makes it easy to be transferred into a car, sparing caregivers a backbreaking transfer. The Once a Dancer, Always a Dancer easyGo does require an attendant. Hydraulic Always the girl with a smile on trying new things.” or electric versions are available. Price and her face, Kim Ocampo, a 24-year- She practiced what she import charges are available upon request old dancer living in Oakland, preached a few months ago at easygo-disabled.com. California, never let her smile when she flew to Oakland to wane. In 2015, she was hit by a take part in a seven-month car while riding her bicycle to the apprenticeship for the Axis Dance dance studio where she taught Company, one of the most pres- salsa, ballroom and tango, and tigious wheelchair/mixed-ability competed. “I had the green light dance companies in the world. to cross the street, but a car ran “I’m learning how to dance with the red light and struck me on my new body, as well as teach my right side.” adults and kids how to dance.” She wound up with a T8 For a dancer who in her injury but has had a very positive previous life danced in a Pitbull outlook, which she credits to her video, her post-injury transi- family. “I believe a strong sup- tion has been surprisingly fluid. port system is important, as well Her positive outlook has even as how I was raised by my mom. garnered the attention of a film I was always a happy baby.” director who is currently work- Ocampo has bounced back from ing on a documentary about her injury, fiercely wanting to her life. Called The Kimberly Blog to Follow: Quadcapable learn as much as she can about Ocampo Story, the film will show Charlie Merritt, a C3 quadriplegic, former her new life. “Don’t change who how her positivity has touched Marine and strongman competitor, has started you are, but become a better many lives. It will be out in his own blog — Quadcapable. His goal is to ‘you’ by overcoming challenges a couple of years. Watch the create awareness, from sharing posts on using and conquering your fears,” she trailer here: www.youtube.com/ FES to strengthen his arms so he will be able says. “Surround yourself with watch?v=Nkadk2fhgSg. Follow to lift again, to a video on how he does a quad positive people and be open to her online at kimocampo.com. cough-assist. Check it out at quadcapable.com.

14 NEW MOBILITY EAT WELL, LIVE WELL

Give Peas a Chance A highly nutritious food we rarely hear about anymore is the green pea, but this wasn’t always the case. About 10,000 years ago, the green pea (a legume, not a vegetable) was one of the first cultivated crops by agricultural societies. Five thousand years later our Egyptian • complex carbohydrates that help sustain By Joanne Smith blood sugar levels for energy, ancestors worshipped this valuable food source and Kylie James, authors of • low in fats and cholesterol to help maintain so much that they buried peas with pharaohs Eat Well Live Well with SCI and healthy lipid levels, so they could take them into the afterlife. Other Neurological Conditions, • low in calories to help maintain ideal weight, Rome’s first cookbook celebrates these green eatwelllivewellwithsci.com gems with nine elaborate recipes. The English • high in fiber to help support bowel function/ children’s rhyme — Peas porridge hot, peas por- routines, ridge cold, peas porridge in the pot nine days old • high vitamin C content to help boost immune — is a tribute to peas, as they helped sustain system, the masses during the 16th century famine. • rich in calcium and magnesium that help sup- And for almost 200 years, a single pea has been port bone health, the focus of one of the most famous children • less likely to cause gas than other legumes, stories of all time — Hans Christian Andersen’s • inexpensive compared to other nutrient- The Princess and the Pea. dense foods. With such a rich history and so much The culinary potential of the pea is endless. nutritional value, it surprises me that we don’t They can liven up any of your favorite stew, hear more about the powerful pea. It has a lot soup, casserole, salad or curry dishes. And their of essential nutrients and health benefits for versatility goes beyond consumption — you people with SCI. Peas are … can put a bag of frozen peas on sore or injured • a healthy source of protein to help maintain limbs to help reduce inflammation. skin integrity, So please, give peas a chance.

Spring Pea Dip

1-1 ½ lbs. fresh pea pods Garnish with a few raw peas. (or 2 cups frozen peas) Tips to easily shell peas: press thumb 1/3 cup ricotta cheese against fullest part of outside seam at bot- ¼ cup fresh mint tom of pod, then split open pod. Slide peas 2 tbsp. Parmesan cheese out. Or tear stem end and pull string down Salt and pepper to taste along the pod (like a pull tab). Pod opens Shell fresh pea pods (or use frozen). Boil easily and you free the peas with a run of the three to four minutes until they are bright thumb. For optimal results, tear stem back- green. Strain peas and place in blender wards and pull down along indented side. with mint. Blend until mushy. Transfer into This removes the sturdiest bit of string and bowl, add salt and pepper. Fold in cheeses. unzips the pod.

14 NEW MOBILITY JUNE 2017 15 HOW WE ROLL

NURSING STUDENT Andrea Dalzell

Nurses always had United Spinal member Andrea Dalzell’s back since she started dealing with transverse myelitis at age 5. Now 29, the former Ms. Wheelchair New York is eager to repay the favor when she graduates from nursing school this year.

Ignoring Doubters

s a wheelchair user striving to become a nurse, Andrea Dalzell has be an excellent one. Later this year she will graduate from the College been surrounded by doubt from day one. Nursing school admin- of Staten Island with her bachelor’s in nursing and take her boards. Aistrators questioned her ability to complete the program. Hospital Then she will finally be a nurse. administrators told her insurance wouldn’t cover her. Faculty doubted Back when Dalzell started her quest, all she had to hang onto was her ability to safely administer the duties of the job. her belief in herself and a sole YouTube video. The video showed an- Dalzell, 29, learned to tune them out. “I detach from whatever other woman who had attended nursing school in a wheelchair. That situation is actually happening and just take a moment to remember was all Dalzell needed — if someone else had done it, so could she. why I’m doing it,” she says. “Part of that is to say that I’m out there in Still, every day presented new challenges. the world doing something that someone told me that I couldn’t do. “My peers all had someone to look to, other nurses that they could And that’s something that we’ve all been told at one point or another, ask how to do things. I couldn’t ask someone who is standing up how that we can’t do something. That’s my fuel for the fire. Tell me I can’t, they did something because I have to adapt that to me,” she says. “I deal so that I can show you how well I can.” with it every day when I’m in clinical. A professional will ask, how do Whether it was passing finals with the highest grades, receiving you expect to do this? And I have to show them that I can do it.” exemplary feedback from patients’ families or simply figuring out a How does she do it? “By thinking 20 steps ahead of everyone else all way to accomplish her daily responsibilities from her chair, Dalzell has the time,” she says. Even with constant vigilance, Dalzell says accomplish- done more than just show she can be a nurse; she has proven she can ing what she has would have been near impossible without the support

BUCKET-LIST CHECKMARK: The FAVORITE FANTASY PRODUCT: craziest thing I’ve done is probably If I could invent one technology when my sister and I went skydiving in that would make my life easier, it New Jersey. We decided to meet death would be a flying wheelchair. That on our terms. It was the most freeing would make life super easy. experience.

16 NEW MOBILITY CAN’T LIVE WITHOUT iWatch

If Dalzell’s face looks familiar, it may be from her central role in Apple’s new ad campaign for the iWatch, which focuses on its accessible features.

I was blown away by the whole process of filming. It wasn’t staged, what

you see is literally my life — what I do every day. Everyone wants to be fit, but when it

“comes to wheelchair users and having to track what we do, it’s a whole different ballgame. Before, there was nothing out on the market that differentiates between steps and pushes. I use the iWatch to track calories when I’m cycling, boxing “ or just working out. I love being able to see the difference in burning calories between pushing and walking. But more than a fitness tracker or a watch, the iWatch has become a Later this year Andrea Dalzell plans to add a lifesaver. I deal with autonomic dysreflexia and it helps me nursing degree to the bachelors of biology/ biological sciences she earned in 2012. monitor my heartbeat, so whenever it gets too high, I can do something before it gets outrageous.

of her family, friends and fellow students. “All of them are like, ‘Oh, no, we’ve got you. Don’t worry about it. Whatever you need, just ask us.’” As if merely proving the doubters wrong was not enough, she received the ultimate reinforcement of her decision while working with a person who recently had a stroke. The partially paralyzed woman had been posing problems for Dalzell’s coworkers and refused to get out of bed. Oozing positivity, Dalzell rolled into the room as a favor to a colleague. She began to worry when the woman instantly started crying hysterically. As Dalzell tried to calm her, the woman explained her reac- tion. “I’ve never seen a nurse in a chair. I thought my life was over.” Seeing Dalzell had given her hope. “In that moment her whole life changed,” recalls Dalzell. “She went from this patient who was giving everyone a hard time, had given up on life and was probably headed to a nursing home, to now — an hour later, after getting cleaned up and in her chair — she was ready to go to therapy.”

ADVICE TO MY YOUNGER SELF: If I WHY I JOINED UNITED SPINAL: Being a member makes you could go back and tell myself one thing part of a community; it gives you a home base — people who before I used a wheelchair, I wouldn’t understand what you are going through, or are at least able say a thing. In order to be the strong to support or help you get you through whatever it is. That’s person I am today, I needed to go incredibly important when you have a disability. through everything I have.

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BY LILLY LONGSHORE lovenia, a central-European country slightly smaller than Ljubljana: the state of New Jersey, is tucked between Austria and Croatia north to south, and Hungary and Italy east to west. The Accessible Capital S Ljubljana, the capital, is not only worth seeing, it is a good place The Eastern Alps cover much of the northern part of the coun- to stay. Bike paths, curb cuts and accessible buses make it easy try, melting into rolling hills and green plains until reaching the to navigate here. There are even green-space parks, complete west coast at the Adriatic Sea. Slovenia was the first nation to with wheelchair accessible swings. The “Old Town” district has secede from Yugoslavia in 1991, claiming its independence and beautiful architecture in a variety of styles, echoing Slovenia’s establishing a democratic government that continues today. history of occupations and reconstructions over centuries, from Tourism became a focus for newly re-formed Slovenia. Much has been done over the past decades to welcome visitors of all abilities. A wheelchair-friendly certification program with many accessibility standards similar to our ADA recognizes communities that have gone the extra mile to make themselves wheelchair accessible. Curb cuts, ramps, accessible restrooms and other accommodations have been provided where feasible — even at historic sites — making this small, friendly nation surprisingly accommodating. Miriam Zweizig, who is a T7-8 paraplegic and uses both a manual chair and canes for mobility, has visited three times. “I really like Slovenia a lot,” she says. “For such a small country, it has so many different environments — Alpine mountains, the Adriatic Sea by the border with Italy. And the capital city of Ljubljana is a very nice-sized city.” Zweizig is a translator and her husband teaches Slovenian at the University of Washington. “Visiting Slovenia comes with the package,” she laughs. In addition to the unique environments Zweizig mentioned, Slovenia has significant limestone caves, caverns and under- Miriam Zweizig sits in the entryway to the walled hill ground rivers in the Karst region. The geologic term “Karst to- town Smartno. pography” derived its origin from this very place.

JUNE 2017 19 Medieval days starting as an outpost during Roman occupa- Narowski praised those who modified Ljubljana Castle. tion, then adding Gothic arches, then Baroque-style buildings, “They were so cognizant of accessibility. Ramps were built with- followed by Venetian and Vienna Secession styles. in the grounds and they blended in … they even added acces- Ljubljana Castle, an example of Romanesque-turned-Gothic sible bathrooms. How many castles have accessible bathrooms? and Renaissance architectures, is now a magnificent history I wasn’t expecting that.” museum. Sitting atop a high hill, it overlooks the beautiful, roll- Another worthwhile stop in Ljubljana is the Slovenian Eth- ing green foothills of the Alps. The exhibits display centuries of nographic Museum. “I particularly liked this cultural museum,” rich history, beginning with prehistoric through Roman times, says Zweizig. The completely accessible facility is “for the people, continuing to the Middle and Early Modern Ages, then World about the people” and compares traditions and cultures of the War I, World War II, the Yugoslavian era, ending with indepen- Slovenians with that of peoples who influenced their nation. dent Slovenia. “I found access good for places like museums,” Slovenians have a reputation for being both well-read and Zweizig says, “even in smaller towns.” multilingual, often speaking five languages. The Ethnographic Kelly Narowski, a professional speaker, military spouse and Museum documents the varied cultures within their region, avid traveler, visited Ljubljana in September 2016. “I judge ac- which took planning and effort. It is now preserved in the Eth- cessibility on if I can do it by myself, and I think with good plan- nographic Museum. ning, I could have in Ljubljana,” says Narowski, who traveled with her husband. Both Zweizig and Narowski toured Ljubljana Castle. “I went to everything — the puppet museum, the chapel. All of the grounds were accessible except the tower,” says Narowski, who sustained a T6 complete spinal cord injury from a car crash in 1998. She often uses her “cobblestone chair” when traveling — a manual chair modified with oversized casters and wheels. “I asked if the castle tour was wheelchair accessible, and the tour guide just took a little different route so I could get Dating from at least the 13th century, around,” she says. “It was my biggest accessibility surprise by Ljubljana boasts many architectural styles. far in Slovenia.“

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20 NEW MOBILITY Ljubljana and SCI Research With its ancient history and architecture, Slovenia may seem like a destination to be avoided by wheelchair users. But even prior to seceding from Yugoslavia in 1991, this nation’s capital city, Ljubljana, had a reputation for its independent ways and ties to the western world — in particular, paraplegics. Ljubljana played an important role in the development of functional electrical stimulation, forerunner of today’s most exciting spinal cord injury research protocol — epidural stimulation [see this issue’s Miriam particularly liked the Slovenian News, page 8]. In 1971, I made plans to visit the city, while traveling in Ethnographical Museum, which she said Europe, with the purpose of meeting researchers at the University of was, “for the people, about the people.” Ljubljana. At 26, just six years post-injury, I was interested in possibly participating in their experimental research, which had enabled a complete paraplegic to stand without braces for the first time. Accessing the Alps A friend and I traveled by train, across the Alps, from Munich to The centralized location of Ljubljana and its many truly wheel- Ljubljana. Our specific destination was a then-modern lab dedicat- chair-friendly hotels make it a great location from which to ex- ed to the emerging field of biomedical research. I was to meet with plore the country. Lojze Vodovnik, the lead researcher, but on the day I arrived, he was “Slovenia is so small, it is only a four-hour drive from one busy at a conference. I met instead with an American researcher, part of the project’s international team. The Safe, Practical side to the other,” says Vesna Susic Palmisano, a native Slove- Theand Safe, Convenient Practical way to In the lab I scrutinized the “state-of-the-art” setup — an old-style The Safe, Practical nian who uses a power chair for mobility due to spinal muscular andtravel Convenient wherever way and to oscilloscope, a mainframe computer, wires with electrode patches. and Convenient way to atrophy. “We say ‘you can go skiing in the morning and have travelwhenever wherever you want. and The only essential research element that was the same then as it is travel wherever and dinner by the sea in the evening.’ It’s great, really.” whenever you want. today was the subject — a paralyzed person with hopes of one day whenever you want. No more worries about Several ski resorts are in the Triglav National Park region in standing and walking. No more worries about having accessible the Julian Alps by the Slovenian-Austrian border. Skipass Ho- As it turned out, I had to return to the United States due to a havingNo more accessible worries about facilities. tel in Kranjska Gorda is an hour’s drive northwest of Ljubljana. serious family illness. Now, 46 years later and 72 years old, I am still facilities.having accessible Professional skiers are available and eager to help anyone who waiting for my turn — but not holding my breath. facilities.  Different models to meet brings a mono-ski and is keen on skiing the Alps. — Tim Gilmer  Different models to meet specific needs! Triglav National Park, established in 1924, is one of Europe’s  specificDifferent needs! models to meet “GO-ANYWHERE” Chairs  Simple to assemble; no “GO-ANYWHERE” Chairs  Simplespecific to needs!assemble; no TheThe Safe, Safe, Practical Practical tools required. andand“GO-ANYWHERE” Convenient Convenient way way to to Chairs  toolsSimple required. to assemble; no The Safe,traveltravel Practical wherever wherever and and Convenient and  Safe and easy to use. way towhenever travelwhenever wherever you you want. andwant.  Safetools and required. easy to use.  Seat and footrest heights whenever you want.   SeatSafe and and footrest easy to heights use. NoJust Nomore more worries worries In! about about Awarded VA Contract V797D-30180 are adjustable. No morehaving worrieshaving accessible aboutaccessible having Mobility  areSeat adjustable. and footrest heights facilities.facilities.  Casters have “total-lock” accessible facilities.  Castersare adjustable. have “total -lock” Solutions brakes.  Different Different models models to meet to meet  brakes.Casters have “total-lock” • Different modelsspecificspecific needs!to meet needs! specific  Lightweight and durable, needs!  “GO-ANYWHERE”“GO-ANYWHERE” Chairs Chairs  Lightweightbrakes. and durable, SimpleSimple to assemble; to assemble; no no “GO-ANYWHERE” Chairs high-quality aircraft-grade • Simple to toolsassemble;tools required. required. no tools  high-Lightweightquality aircraft and durable,-grade  Safe Safe and andeasy easy to use. to use. aluminum. required. aluminum.high-quality aircraft-grade  Seat Seat and andfootrest footrest heights heights  Compact, convenient, and • Safe and easyare adjustable.are to adjustable.use.  Compact,aluminum. convenient, and  Casters Casters have have “total “total-lock”-lock” PORTABLE! • Seat and footrest heights are  PORTABLE!Compact, convenient, and brakes.brakes.  Won’t Rust or corrode; adjustable. Lightweight Lightweight and anddurable, durable,  Won’tPORTABLE! Rust or corrode; high-high-qualityquality aircraft aircraft-grade-grade easy to clean. • Casters have “total-lock” brakes.  easyWon’t to Rustclean. or corrode; aluminum.aluminum.  Virtually maintenance- • Lightweight Compact, andCompact, durable, convenient, convenient, high-quality and and  Virtuallyeasy to maintenanceclean. - aircraft-gradePORTABLE!PORTABLE! aluminum. free.    free.Virtually maintenance- • Compact,Won’t convenient,Won’t Rust Rust or corrode;and or corrode;  Cushions are available in easyeasy to clean. to clean.  Cushionsfree. are available in PORTABLE! (3) colors and remove  Virtually Virtually maintenance maintenance- -  (3)Cushions colors and are remove available in • Won’t Rustfree. orfree. corrode; easy to clean. easily for cleaning.  Cushions Cushions are availableare available in in easily(3) colors for cleaning. and remove • Virtually maintenance-free.  Optional accessories (3) colors(3) colors and andremove remove 30-Day  Optionaleasily for accessories cleaning. • Cushionseasily areeasily available for cleaning. for cleaning. in (3) colors include: wheeled custom  Optional Optional accessories accessories Risk-Free  include:Optional wheeled accessories custom and remove easily for cleaning. travel bag, positioning include:include: wheeled wheeled custom custom Trial travelinclude: bag, wheeled positioning custom • Optional accessoriestraveltravel bag, bag, positioning include: positioning belts, slide-out commode belts,travel slide bag,-out positioning commode wheeled custombelts,belts, slide travel slide-out -commodebag,out commode tray, 2-way adjustable positioningtray, belts,tray, 2-way 2slide-out- wayadjustable adjustable commode tray,belts, 2- wayslide adjustable-out commode tray, 2-wayheadrest, adjustableheadrest, and andheadrest,upgraded upgraded and For Home AND On-The-Road; headrest, and upgraded ForFor home home AND AND on -the-on-the-road;road; When When ya Gottaya Gotta Go, Go, We We Go GoWith With Ya!” Ya!” headrest,tray, 2-way and adjustable upgraded upgradedcushions! cushions!cushions! cushions! For home AND on-the-road; WhenWhen ya Ya Gotta Gotta Go, Go, We We GoGo With Ya!” Ya!” cushions!headrest, and upgraded For home AND onwww.goesanywhere.com-the-www.goesanywhere.comroad; When ya [email protected] [email protected] Go, We Go With 800- Ya!” 800-359 359-4021-4021 cushions! For homewww.GoesAnywhere.com AND on-the-road; When | [email protected] ya Gotta Go, We Go With Ya!” | 800-359-4021 www.goesanywhere.comwww.goesanywhere.com [email protected] [email protected] 800- 800-359359-4021-4021 www.goesanywhere.com [email protected] 800-359-4021 JUNE 2017 21 Custom wheeled travel case “For home AND on-the-road; When ya Gotta Go, It'll Go With Ya!" available. around Lake Bled is almost completely wheelchair accessible except for a short length of gravel.” Bled Castle, one of the oldest in Europe, overlooks the lake and is wheelchair-friendly. The history of Bled, dating back to 1011, is housed and exhibited here. Lake Bled harbors Bled Island, the only natural island in Slo- venia. Pilgrimage Church of the Assumption of Maria is built on the island. Tourists arrive via paddle boats. “They aren’t accessible, but a man, without even discussing it, helped my husband pick me up into the boat,” Narowski says. Zweizig stayed in the town of Bled instead of going to the island. “I thought it was really pretty. The town of Bled is cer- Accessibility tainly a beautiful place.” Neither Narowski nor Zweizig was able is refreshingly to ascend the 55 steps to enter the church. common. Thermal Spas oldest national parks. It is highly protected and remains largely Slovenian-Style unspoiled. Four hundred mountains over 6,500 feet in elevation Palmisano describes over a dozen natural hot spring spas sprin- lie within Triglav, Slovenia’s only national park. At 9,396 feet, kled throughout the country, some in the Alps on the north and Mount Triglav is the highest peak. The valley town of Trenta northeast sides of the country, and others in the seaside towns. in the park region is a nicely accessible community along the “Slovenia is known for its thermal spas,” Palmisano says, “and Soca River. The Trenta Lodge is wheelchair-friendly, as is the most are wheelchair accessible.” Trenta Museum with exhibits on folklore, culture, heritage and In the Panonic region near the mountain town of Maribor mountaineering. — one of the award recipients of Slovenia’s wheelchair-friend- Also in the Triglav region is famous Lake Bled, which has ly certification program — the thermal spa of Terme 3000 served as the venue for the World Rowing Championship multi- Moravske Toplice resides. It provides more than 10 wheelchair ple times. This 358-acre glacial lake is truly picturesque. “It’s like accessible rooms in its three-hotel resort, and 14 pools, the larg- something out of a fairy tale,” says Narowski. “The 10-mile path est of which is accessible by lift. Additional family fun includes

22 NEW MOBILITY a golf course, walking trails and excellent cuisine. In Maribor, the Regional Museum Maribor is wheelchair- friendly, including restrooms. Part of the museum is housed in Maribor Castle, completed in 1483 by Holy Roman Emperor Frederick III. The museum exhibits focus on the regional history, as this region was occupied by Rome, Germany, Austria and Slovenia over the centuries. Archeology, ethnology, and the comprehensive cultural heritage of this area is also preserved here. Along the 28-mile coast of the Adriatic Sea, a series of small villages are linked by a wheelchair-accessible bike trail. Palmi- sano describes a spa and beach operated by the Slovenian Mus- cular Dystrophy Association. “There is a spa in Izola that has For over 425 years the Lipica Stud Farm has bred Lipizzan horses, famous for their beauty.

great access to the sea and a heated swimming pool with sea Wengerk Karolina by Photo water. Bathing attendants can help you in and out of the water. Also there are accessible showers and toilet. You can book The green hills are dotted with wineries and tasting rooms, a room, have PT and, if needed, personal care — it’s very nice many wheelchair-friendly. Zweizig, Narowski and Palmisano when traveling and not so expensive.” all compare the wine produced in this region to that of Tuscany, Tourists are welcomed to book a room, just like in a regu- Italy. “I didn’t know they had wine in Slovenia,” says Narowski. lar hotel. A similar center, also in Izola, run by the Slovenian “It was really good. I bought four or five bottles of it.” Paraplegic Association, has a nice pool but no beach access. “You can visit all year round or come for the Cherry Festi- val or in the grape picking season,” adds Palmisano. Some of Great Wine and Caves the most famous wine cellars in the region that are wheelchair- and the Karst Region friendly include Klet Dobrovo and Movia. Spanning the vine-covered hills one-hour’s drive north of Izola Near Goriska Brda is the Karst region, a 166-square-mile is the town of Goriska Brda. “It’s wine country,” Zweizig says. plateau between the Vipava Valley and the Adriatic Sea. Among “It has all these little castle towns. It’s really pretty and even has worthwhile sites in this area is the most visited cave in Europe, JAY_HV_New_Mobility_Ad.qxp_Layout 1 4/24/17 12:45 PM Page 1 accessible bed-and-breakfasts.” Postonja Cave, a network of nearly 15 miles of passages, caverns

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JUNE 2017 23 and chambers, which is served by a train. Visitors with mobil- The friendliness of the Slovenian people is a strong asset, as ity needs can view the wealth of calcite formations, stalactites well. “There’s never been a situation that we couldn’t find help,” and stalagmites from the train since the cave itself is difficult says Zweizig. “It’s been very easy to make friends there. It’s not to navigate. uncommon for them just to say ‘Hey, we have this cottage up Another must-see in the Karst region is the Lipizzan Stud in the mountains. If you want to go visit it, you’re welcome to.’” Farm in Lipica. “The farm is completely wheelchair accessible,” Zweizig and her husband plan to make more frequent trips to Palmisano confirms. “You can take a tour and see a perfor- Slovenia and enjoy the company of their new friends. mance of the classic riding school.” Austrian royalty began “We loved it,” says Narowski. “We wished we had a couple breeding white Lipizzan horses for agility, intelligence and more days there. I would totally go back.” sturdiness over 430 years ago. The official horse of the Spanish Riding School of Vienna, these intelligent and graceful horses are used exclusively for teaching classical horsemanship in its Resources purest form. The 768-acre estate includes a wheelchair acces- Ljubljana, www.visitljubljana.com/en/visitors/ sible tour of the Manor house, Cernigoj Art Gallery, Lipizzaner Thermal Spas, www.slovenia.info/en/Thermal-spas. Museum, Carriage Museum, Chapel, and three miles of acces- htm?term_kopalisce=0&lng=2 sible nature trails. Spa of Slovenian MDA, www.dom2topola.si/# Slovenian Paraplegic Association, zveza-paraplegikov.si/eng/ A Gracious People Spa of Slovenian Paraplegic Association, “If you come to Slovenia, it’s impossible to get lost because ev- www.domparaplegikov.si/ erybody speaks English, even in small villages,” says Palmisano. Bled, www.bled.si/en/about-bled That certainly provides added comfort, as Slovenian is not the Triglav Natoinal Park, www.tnp.si/national_park/ easiest of languages to learn. “Here, when we go to school, we Wine Country of Goriska Brda, www.brda.si/eng/ have English, Italian and then we can choose French or German Lipica Stud Farm, www.lipica.org/en/discover-lipica — a third language besides Slovenian.” This ups the odds of good communication in a country building its tourist trade. The fore- Accessible Wineries: sight of Slovenia to provide wheelchair access nationwide puts Klet Dobrovo, klet-brda.si/en/ themNew Mobilityt ahead of OCT many 2014 countries 6000TRS_mm_346.qxd vying for tourist 9/26/2014 dollars. 9:44 AM PageMovia 1 , www.movia.si/en/hisa-movia

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24 NEW MOBILITY STARTING THE ROLL: A Look Back at the Roll on Capitol Hill

BY IAN RUDER

This June 11-14 well over 100 United Spinal members and fellow advocates will descend on our nation’s capital to advocate for the SCI/D community at the 6th Annual Roll on Capitol Hill. Here’s a look back at the event’s origins and how it has evolved in its first five years.

THE TASK AT HAND Next up, transportation. How are you going to get 80-plus wheelchair users Imagine you wanted to plan a first-of- from the hotel to the Capitol and back? its-kind advocacy event in Washington, And because you want a challenge, let’s dent for government relations, had just D.C. No sweat, right? Organizations do it say that the event is going to be the first been hired as United’s director of public all the time. gathering of your organization since it policy six months earlier. She remembers Well, what if you add in the fact that merged with another organization and the phone call where she learned that she the majority of your attendees use wheel- everybody is still feeling each other out. would be part of the team responsible for chairs or other mobility devices. Don’t putting the event together. As a policy forget that many will need accessible ho- person working in D.C., she had helped tel rooms, and that many will be travel- A SENSE OF POSSIBILITY with similar conferences many times, but ing with attendants. The hotel will also Those were but a few of the logistical the logistics of the Roll on Capitol Hill need to have accessible meeting rooms obstacles facing Alex Bennewith and were unique. “Making sure everyone was and yeah, you’ll probably need to provide the United Spinal policy team back in accommodated and doing it for the first some medical equipment for traveling at- 2012 as they planned the first ever Roll time here definitely added another layer tendees who can’t bring their own. Still on Capitol Hill for that summer. Ben- of complexity,” she says. good? Excellent. newith, now United Spinal’s vice presi- As United’s longtime legal counsel, James Weisman had been in on discus- sions about holding an advocacy event for decades. “We always wanted to do it, but we never got it together,” says Weisman. “It takes so much from the staff to pull something like this off, and we never felt like we really had the ability.” That changed in 2011 when United Spinal merged with the National Spinal Cord Injury Association. In addition to adding staff and resources, the merger brought NSCIA’s members and chapters

Above: Stephanie Woodward, Alex Wegman and Scott Porter get ready to roll in 2012.

Left: Smiles abound in 2016, even after a long day on Capitol Hill.

DECEMBERJUNE 20172014 25 in — many of whom were unfamiliar new, and having everyone finally together with United Spinal. “We had to have a was so much fun.” There weren’t as many face for the chapters so they could know attendees as subsequent Rolls on Capitol who we were, and the Roll on Capitol Hill Hill, and staff only scheduled about half seemed like a good way to help them fig- as many visits to representatives as later ure it out,” adds Weisman. Rolls would have, but the event showed The first Roll on Capitol Hill kicked what was possible and got rave reviews off at the historic Mayflower Hotel on a from attendees in the final day’s wrap-up After traveling via shuttles the first few years, advocates now take the D.C. metro to make their way to typically hot and humid June weekend in session. “I was overwhelmingly buoyed and from Capitol Hill. Shown here (L-R): Erin Gildner 2012. “There was a sense of possibility in by the spirit and enthusiasm the first and Jen Goodwin from Arkansas, and Mark Krider and Mark Race from New Hampshire. the air,” says Abby Ross, now United Spi- year,” adds Weisman. nal’s COO. “Everything was exciting and With one in the bag, the stage was set for future Rolls on Capitol Hill. “Once we knew that we could actually pull the Roll off, there was a big sense of confidence,” says Ross. For the next two years, the Roll on Capitol Hill moved northwest to two hotels in Woodley Park. The hotels offered more space and accessible accommodations, but a longer, more difficult commute to Capitol Hill. Each year the event grew, adding attendees, sponsors and advocacy priorities. Both Weisman and Bennewith saw a change in the way the Roll was perceived in year three.

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To make new solutions available to patients, “I think the magnitude of the Roll we team with our scientific peers, physicians, kind of hit everyone in the third year,” governments, and advocacy groups. says Bennewith. “People realized this was When we work together, the result is a the real thing and it wasn’t going away.” remarkable impact on patients’ lives and the healthcare systems which serve them. Weisman was excited to see the impact grow beyond just the individuals who Learn more at abbvie.com attended and the people they met with. “The people who came were caught up in the spirit and the enthusiasm, but it took a couple of years for the enthusiasm to translate to the chapters and the community. That’s when they started to see it as an important thing to do.” What had started as a slightly awk- ward gathering of a newly mixed family had become a full-on family reunion. “When we started, I think chapters and members were somewhat isolated in their regions,” says Bennewith. “Now it’s a community. People can connect with

26 NEW MOBILITY folks and not feel isolated and alone deal- other partners, the 2017 Roll on Capitol that with every disability rights issue, ing with their issues.” Hill is poised to be the biggest and most there is usually no logical other side,” he To save on the prohibitive cost of successful one yet. After the event’s in- says. “So, if you keep making the argu- renting accessible transportation for 80 tense four-day duration, United Spinal ment, then eventually people will hear wheelchairs and to be closer to the action, staff will take a few days off and then con- and do what you want. That’s why con- the Roll moved back downtown for years tinue planning the 7th annual Roll. In tinued vigilance is so important, because four and five. The new location made it fact, planning for 2018 started as early as if you don’t make the argument over and easier to use D.C.’s famed metro to actu- the end of 2016. “10 is not very far down over again, it won’t get done. But if you ally roll to Capitol Hill. By year four the the road from six,” points out Bennewith. do, then it becomes everybody else’s ar- event had begun to take on a life of its Weisman makes it clear why it is so gument and they start to think they made own. Everyone from staff to returning important that attendees keep making it up. Discrimination won’t go away if you attendees was more confident, there were the arduous trip every summer. “I find don’t highlight it.” less unexpected hiccups, and everyone was better able to focus on the most important thing – making the voice of the community heard on Capitol Hill. Do you Believe in Magic? “It’s been a pleasure to see people who have come multiple times and see how they are now prepared for it and excited Bowel & Bladder Basics are our Business! for it,” says Ross. “They’re passing the information to the new people.” Urological Supplements Suppositories Cran Magic + ™ The Magic Bullet™ MAKING AN IMPACT bladder, kidney & urinary health. safe & sure! Faster acting, The Roll on Capitol Hill’s impact has water soluble suppositories. also changed United Spinal. “As much Mannose Magic™ as we shaped the Roll on Capitol Hill, maintain a healthy urinary tract- flush Bowel Supplements it has shaped us,” says Weisman. “It has away E.coli. Magic Cleanse™ changed who we are, and it has put us on promotes fuller movements the map as a disability rights organiza- with greater ease tion. There is nothing more grassroots-y (and less time). than bringing people to Washington. Be- cause we come to Washington and bring our members, we put our money where Enzyme Magic™ our mouth is and we can take controver- better digestion= better elimi- nation. sial positions … Other disability groups in D.C. see us that way, and they want our support.” “Now, whenever I go back to the Hill or have meetings around D.C., people say, ‘Oh yeah, I remember Roll on Capi- tol Hill,’” says Bennewith. She has a long list of representatives and aides who have told her the ROCH visits opened their Mention This * eyes, not only to policy issues, but to the Ad and Receive realities of living in an often-inaccessible 5% OFF world. “I remember one staffer telling me how one of the visits made them realize their office wasn’t accessible. That makes www.conceptsinconfidence.com me feel good because that’s what it’s all about, helping people realize things about 2500 Quantum Lakes Dr. #214 accessibility that they didn’t before.” Boynton Beach, FL 33426 With over 100 wheelchair users al- (800) 822-4050 ready confirmed at the time of publica- *one time discount per customer tion, not including fellow advocates and

JUNE 2017 27

“I really love kayaking,” says Luticha Doucette, 33, of Rochester, New York. “Being so close to the water and gliding along with each paddle stroke is soothing and calm- ing.” Doucette, a C5-8 incomplete quad with TBI, kayaks with Rochester Accessible Adventures.

By Bob Vogel

28 NEW MOBILITY daptive recreation programs offer likely to pull up multiple hits. The bene- a great opportunity to re-connect fits? Recreation puts us in the Zen state of A with an adaptive version of an being in the moment (usually in a healthy activity you loved prior to your disabil- outdoor space), changes our perspective ity, or to try out an activity for the first for the better, and allows us to share our time, and there has never been a better experiences with other program par- time than now. Innovation in adaptive ticipants to forge strong bonds and new recreation equipment has expanded ex- friendships. ponentially recently — a Google search Here is a look at some adaptive recreation options — most of which are ac- of adaptive recreation in your state is cessible to those with limited or no arm movement — along with some of the many programs that offer them. KAYAKING “Kayaking is fantastic, like gliding on Photo by Missy Rosenberry water. It’s silent and an easy way to ex- Kerrie Giesen uses a Hoyer lift to get into a kayak. plore places I never thought possible,” says Betty Merten, 60, of Madison, gressed,” says Kerrie Giesen, 46, of Web- Wisconsin. “It’s also a great workout.” ster, New York. Giesen was re-introduced Merten, who has spina bifida, kayaks to kayaking through Rochester Acces- with Madison SCI — a United Spinal sible Adventures, a multi-sport program chapter with a unique program that pro- located in Rochester, New York. “What vides use of adaptive kayaks and hand- I love about kayaking at Accessible Ad- cycles through county, state, and mu- ventures is they have a Hoyer lift, which nicipal parks around the Madison area. takes away all of the hassles of needing The chapter is working on expanding the to round up a bunch of people and teach program state-wide. Madison SCI also them how to transfer me. The lift makes has a trailer for people that want to tow the transfer from my chair to the kayak a kayak to one of the countless bodies of seamless and easy. Also, with MS, I get water in central Wisconsin. numbness with my hands and it becomes “I’ve kayaked with Madison SCI five difficult to hold the paddle, but they have times. It gives me independence, be- a device that holds the paddle in the ing able to paddle where I want, when I middle — holds it up — so I don’t have want, and it’s a great way to interact with to worry about shoulder or arm fatigue.” wildlife on the water,” says Tina McFad- den, 52, of Cottage Grove, Wisconsin. In her 27th year as a T12 para, she says, “I’d HANDCYCLING never kayaked before my injury and I re- Learning to ride a bike is one of life’s ally enjoy it.” McFadden’s first event was milestones, one that feels akin to flying a Madison SCI group outing to the Wis- and represents freedom. Handcycling consin Dells — an area known for lakes offers a chance to get re-acquainted with and rivers that meander through scenic, that feeling or experience it for the first glacially-formed sandstone formations. time. It is also a great family sport or ac- Kevin Karr, from the adaptive kayak tivity to share with nondisabled friends. equipment company Creating Ability, “Cycling was another activity I used to brought a wide variety of adaptive kayak really enjoy quite often, until my MS pro- gear, including seating adaptations, grips gressed to the point where I could no lon- for people with no hand movement, le- ger do it. I never thought I’d be on a bike vers to assist with limited hand move- again,” says Giesen, who hadn’t ridden in By Bob Vogel ment, and double and triple-place kayaks seven years. “I went handcycling on an for people with no movement at all. upright handcycle (where seat height and “I loved kayaking before my MS pro- rider position is similar to a wheelchair),

JUNE 2017 29 also with Rochester Accessible plete para, was re-introduced to Adventures. Being on the hand- the sport at Vermont Adaptive cycle was amazing, especially Ski and Sports, a multi-sport cycling on the Erie Canal path.” program located in Killington, Giesen says the Accessible Ad- Vermont. She tried two differ- venture bike set-up — they have ent off-road handcycles, both partnered with the Erie Canal manufactured by Reactive Ad- Boat Company — is perfect be- aptations. First McNeill tried cause although she loves riding, the Bomber, a rear-wheel drive, she doesn’t want to spend the rear-suspension model ridden in money for a handcycle and can a prone position with legs tucked rent one from Erie Canal when- underneath the rider. Steering is ever she feels like riding. Maria Saxon tries adaptive handcycling with Joe Moore, execu- accomplished with handlebars Lindsay Elegado, 39, from tive director of Adaptive Expeditions. when gliding downhill and by Charleston, South Carolina, shifting your weight on a chest- found handcycling surprisingly support while pedaling. Next she enjoyable. “I had never cycled, and when I I was younger,” says Saxon. “I’m a school tried the Nuke, a recumbent, rear-wheel tried it, it was beautiful, I loved it,” says El- teacher and found out about Adaptive drive, rear-suspension handcycle, where egado, who has a congenital neurological Expeditions through an archery clinic. I you sit upright with your legs suspended in disease. She tried handcycling with Adap- took the clinic and had a great time, and front of you. tive Expeditions, a multi-sport program it led me to try all of these new sports in “I liked the Nuke best, it was more located in Charleston. “I look forward to the past few years.” comfortable for me, plus I’m more inter- trying it again this summer. Plus, taking ested in riding dirt roads and rough trails part in these programs is great because I OFF-ROAD CYCLING than single-track trails,” says McNeill. “It meet new people with different disabili- For getting out into the wilderness under was fun and a great workout, working ties, and it’s great to compare stories and your own power, nothing beats an off- hard to pedal to the top of the mountain, laugh about situations that we get into.” road handcycle. The combination of rear- and even more fun enjoying a fast down- Another enthusiastic Adaptive Expe- hill run through the woods. It’s a sport I wheel drive and multiple gears enables a ditions handcyclist is Maria Saxon, 37, will be back into for sure. I also kayaked rider with the skills and muscle power to from Hanahan, South Carolina. “Of all before my injury and started kayaking go almost anywhere nondisabled moun- the adaptive sports I’ve tried, handcy- with Vermont Adaptive as well.” tain-bike riders ride. cling is my favorite,” she says. “I’d cycled The Bomber was the handcycle of “I was a mountain biker before my inju- since I was a kid, and it was great to be choice for Greg Durso, 32, of Stony Brook, ry, and it felt great to be back in the woods, riding again.” Saxon, in her 23rd year New York, who also got re-acquainted as a T12 complete para, was introduced on the trail, mountain biking again,” says with the sport through Vermont Adap- to the sport at an Adaptive Expeditions Paula McNeill, 51, from Rutland, Vermont. tive. “I was really into mountain biking Handcycle Day where the organization McNeill, in her seventh year as a T8 com- before I became a T4 complete paraple- provides a variety of bikes for people gic,” says Durso. to try. In addition to new riders, quite “As soon as I started off on the trails, a few wheelchair users who have their ON THE COVER I was blown away, thinking ‘I’m back, own handcycles turn out for the ride and I’m mountain biking!’ I can’t believe this festivities. “Handcycling makes me feel thing actually exists. Here I am eight free, and at the same time it is the best years after my injury and I’m mountain workout I’ve found,” says Saxon. “I use biking! One of my first thoughts was I muscles that I haven’t used in years, and want one immediately, but how am I go- it really gets my heart and lungs working to come up with the $7,500 to buy it? ing. Plus it’s a lot of fun riding with other Last summer I rode three different days, wheelchair users, getting to know them, and I’m planning on coming out and rid- and forming new friendships.” Jet Turner, from Bellevue, Idaho, in ing a lot more this summer.” his 40th year as a C5 incomplete quad, Like many participants in multi-sport enjoys riding his Bomber handcycle Before being paralyzed at the C5-6 organizations, Saxon has also tried other as part of an off-road handcycle camp level in 2009, Kirk Williams, of Boulder, adaptive sports through Adaptive Expe- put on by Telluride Adaptive Sports, of Colorado, was a semi-professional moun- Moab, Utah. ditions, including kayaking, sailing and tain bike racer. He got back into trail rid- surfing. “I never really did sports when ing doing downhill mountain chairs at

30 NEW MOBILITY ing career. Shortly after she bought a used handcycle, she heard about Rock ’n Roll Yosemite adaptive cycling camp, held each year in early May and hosted by the City of Sacramento Department of Parks and Recreation, Access Leisure section, through its Paralympic Sport Sacramento club program. “Before my injury I was really into camping, and I found the program to be a perfect balance. The tent cabins give you the outdoor feel of camping but have ADA-height accessible beds, and there are public bathrooms and showers complete with shower chairs. I had a bike, I was back into camping, got to try adaptive rock climbing, and I was amazed at how accessible Yosemite is. It was a great re-introduction to camping, and even better was hanging out with other wheelchair users and others with disabilities, Kirk Williams is shown on his own custom Nuke handcycle with BionX power assist. A former semi-pro mountain biker, Williams was injured at the C5-6 level while racing. He started downhill sharing stories and tips and laughing mountain-chairing at the National Center for the Disabled in Winter Park, Colorado. about disability-related things that can be frustrating in day-to-day life.” Another great option for adventure the National Sports Center for the Dis- O’Connor designed it so the quad grips travel and sleeping under the stars is Wil- abled in Winter Park, Colorado. At Win- can easily be put on and taken off, so pro- derness Inquiry, a Minneapolis, Minne- ter Park, Williams met Jake O’Connor, grams can switch them out for a para or sota-based program that offers adventure owner, designer and manufacturer of Re- quad. “It’s great!” says Williams. “I can trips — from exploring national parks to active Adaptations. O’Connor said he was ride it and climb up serious mountain bike adventure travel in far-off corners of the working on a recumbent mountain bike terrain. You can set the amount of power world. The trips are based on universal and wanted it to be usable for quads. Wil- assist you want, from no assist, to minimal design and incorporate nondisabled cli- liams gave his input as O’Connor spent assist, to full power where you aren’t work- ents with people with disabilities. Wil- years developing what would evolve into ing at all. I’m so stoked on this bike, I can’t derness Inquiry works with each person the Nuke, a recumbent upright handcycle describe it. Mountain biking is my passion to see if they need assistance, adaptations that could be ridden by anybody and eas- again, thanks to the Nuke.” or help with daily activities around camp, ily adapted for quads. Williams raised the money to buy and will provide a personal care atten- “Jake worked with me and designed a his Nuke partly on his own, but also got dant if needed. “Because every trip and version of the Nuke that I can ride by add- grants from the Challenged Athletes every client is unique, our attitude is ‘if ing a power unit, the BionX,” ” says Wil- Foundation and the Kelly Brush Founda- we can make it happen, let’s make it hap- liams. The system consists of a lithium- tion [See resources]. pen,’” says Jeff Kemnitz, the program’s ion battery and a power hub on the drive outreach director. wheel. The rider can dial in the amount of Mark Smith, 43, of Brooklyn Park, power assist they want from zero (straight ADVENTURE TRAVEL Minnesota, estimates he has done about pedaling) to a 250 percent power assist. AND CAMPING 30 trips with Wilderness Inquiry. “One This is a great asset for handcyclists with Nothing refreshes the soul and re-adjusts of my favorites was kayaking and camp- aging shoulders, riders who are working one’s attitude like being outside, except ing for six days in Prince William Sound, on getting in shape but want to keep up perhaps adventure travel. When you com- Alaska,” says Smith, a para who also has with other cyclists from day one, and rid- bine the two, it creates a paradigm-lifting, a TBI and is vision impaired. “On the ers with limited arm movement and grip. positive energy-enhancing experience. Alaska trip we saw glaciers calving and For Williams, O’Connor adapted a For Thea Rosa, 49, of Citrus Heights, had to navigate through fields of ice.” His quad grip with a twist throttle to con- California, in her 13th year as a T12 para, favorite local adventure is doing canoe trol the BionX motor, and another quad an adventure camping experience in 2011 paddle trips and camping in the islands grip twist enables him to apply the brake. inspired her to launch her handcycle rac- of the Boundary Waters of Lake Superior.

JUNE 2017 31 “Wilderness Inquiry got to figure something fun trips are a mix of family to do because I’m miser- and friends, as well as oth- able.’” So she signed up to er people who are nondis- try sailing with the Bay Area abled. On most trips I don’t Association of Disabled know other people until I Sailors — BAADS — with get on the trip, and it’s al- its docks in San Francisco ways a great way to meet Bay, arguably the world’s new people and form new most versatile sailing area. friendships — that’s the The first time Pugh best part of these adven- went out with BAADS she tures, meeting new people thought it would be on a and getting to know them.” dinghy riding puffs of breeze Kory Macy, 40, from around the little harbor. In- Madison, Wisconsin, has stead she was secured to a also been on many Wil- gimbaled seat on a 27-foot derness Inquiry adven- sailboat and sailed across tures. “I like their trips so the bay around Angel Island. much I got my husband “It was choppy and blowing John, who is 39 and had like stink, and I loved every never done any kind of second of it — my life was adventure trips before he forever changed,” she re- met me, to try one, and calls. “I was back in the sport now he joins me all the Kory and John Macy pose in font of geyser in Yellowstone National I never thought I’d see again Park, during a Wilderness Inquiry trip. time,” says Macy. “They — jumped in with both feet. are great at thinking out I took sailing lessons and got of the box to make things certified through the Ameri- issues covered. I’ve turned other people accessible. My initial experience with can Sailing Association and ended up be- on to them, and they have also had posi- this was on a Wilderness Inquiry trip coming vice commodore, then commo- tive experiences. ” to Kenya in 2009 when my condition, dore of BAADS.” spinocerebellar ataxia, had progressed SAILING These days BAADS has a 30-foot sail- to where I was using a wheelchair full boat with a gimbaled seat, and the helm Sailing combines love of the water with time.” The trip was a safari, complete can be controlled by wheel or joystick, harnessing the power of the wind, a with lions, tigers, elephants, monkeys, as well as a fleet of 25 single and double- unique synergy that a lot of people get giraffes, and hippos in the wild, and person dinghies that can be operated by hooked on. meeting local tribes-people, and camp- tiller or joystick. Moving the joystick left “One of the things I love about sailing ing out in their village. “To be able to and right moves the rudder to port (left) is it is a great equalizer,” says Kathi Pugh, join on hikes during the safari, the Wil- and starboard (right); moving it forward 58, from Berkeley, California. “It doesn’t derness Inquiry folks fashioned rick- lets the sails out; pulling the joystick back matter if you are competitive or recre- shaw-type poles that attached to each tightens the sails; and a switch enables ational. A high level quadriplegic can side of my wheelchair so it could be eas- independent operation of the jib and do it just as well as a paraplegic or non- ily pulled and keep up with the group.” mainsail. “It’s a great sport to participate disabled sailor. It’s about who is the best Other Wilderness Inquiry trips Macy in with friends, family and kids, as recre- has been on include Yellowstone Na- sailor, not who has more muscle control.” ation or competition,” says Pugh. tional Park and a three-day canoe trip Pugh, in her 38th year as a C5-6 quad, Another San Francisco attorney, Cris- on the St. Croix River, camping out each grew up sailing every chance she got with tina Rubke, 38, has been sailing with night. “I love being outdoors, camping her dad. After her injury, she focused on BAADS for nine years. Rubke, who has and sleeping in a tent or under the stars if her studies, passed the bar and was work- arthogryposis multiplex congenita (her it’s a nice evening. Wilderness Inquiry is ing as a lawyer for the largest law firm in nerves in her arms and legs no longer thinking about accessibility from before the state. “My office window overlooked function), found out about BAADS dur- you register, starting with an extensive San Francisco Bay. On a beautiful day I’d ing a chance meeting at a café. “A group questionnaire and following up about a look out and see all these boats sailing of ‘old salty guys’ told me, ‘You should week before your trip with a phone inter- and think, ‘Oh my gosh, I’ve got a great come sailing with us,’” she says. Sizing up view to make sure they have accessibility job but all I do is work, work, work. I’ve her power chair and chin control setup,

32 NEW MOBILITY MAKING THE MOST OF THE OUTDOORS IN MADISON Riveting recreation doesn’t have to involve strenuous exer- Kamal. “We had wheelers, and one member came with her cise. No one understands that better than Monica Kamal, the family and kids. We did it in September when there was a lot founder of United Spinal’s Wisconsin chapter, Madison SCI, of migration going on and you could spot some rare species. and Access Ability Wisconsin, another Madison-based orga- We plan to do more of this.” nization dedicated to providing outdoor mobility to enable Madison SCI member Tina McFadden is also an avid bird- wheelchair users to enjoy the state’s beautiful public lands. watcher. “I live in a wooded area and we have many bird One of Access Ability Wisconsin’s signature programs ac- feeders in our yard,” she says. “My kitchen looks over the complishes this by offering four Action Trackchairs — battery backyard bird feeders. The challenge is identifying different powered, all-terrain chairs mounted on tank-style treads — species and trying to find new species to add to your list. So that can be checked out for free. Included is a trailer to tow far I’ve seen three different types of orioles, indigo buntings, the Trackchair, which can be used for anything from hiking, rose-breasted grosbeaks, and woodpeckers — both northern fishing, hunting or camping to bird watching. Kamal, in her flickers and downy woodpeckers — as well as various kinds 16th year as a T4 complete para, says AAW’s goal is to continue of hummingbirds. I have a bird book and I try and identify growing the fleet of Trackchairs and expand the number of what I can. This is where it would be great to go out with the places in the state where they are offered. The Track- chairs allow users to get out and explore without some of the limitations of traditional chairs. “I’ve used the Track- chair for camping, and there is nothing like it for getting out in the woods,” says Gary Stott, 62, from Oregon, Wisconsin, a C3-4 incomplete quad for seven years. “It is really quiet and a great way to get around the campsite, over trails and out in the bush.” For those looking to take their explorations to the next level, Kamal has put together a birdwatch- Photo by Steve Spaeni ing program. The goal is United Spinal members Mike Mohr, Tina McFadden and Monica Kamal go birdwatching in Madison, Wisconsin. to locate and identify and observe different types of birds, which is especially rewarding Trackchair and a trained bird guide so you could point out and when you find a rare or unusual — for your area — species. It positively identify each type of bird.” can be in a social group or a way to be alone in nature. Even without a Trackchair, Madison has plenty to offer out- Kamal’s advice for starting birdwatching is to contact your door enthusiasts. local Audubon Society and local Ornithological Society for in- “The Madison area also has great hiking,” says Madison- formation and advice. It turns out the best birdwatching times resident Betty Merten. “I go on walks (wheels) on the many are at sunrise and sunset, something that doesn’t always fit walking paths and bike paths around the city. They are beau- into body-management schedules for wheelchair users. “Be- tiful. It’s a great way to get exercise, and see nature’s many cause of this, I worked with the chapter president of the Or- moods — from emerald green grass and white and pink nithological Society in this area,” says Kamal. “He came to a flower blooms in the spring to late summer evening fireflies, Madison SCI meeting and did a presentation on birdwatch- and the riot of color performed by autumn’s leaves. I usually ing and offered to lead a group in the later afternoon rather go with a friend or two. Sometimes they are wheelchair users, than evening,” says Kamal. Turk even provided binoculars on sometimes they are walkers, and we explore areas of the city a late afternoon birdwatching outing. “It was a success,” says that I never even knew existed.”

JUNE 2017 33 rigged a chest-mounted chin control for her. “I started to get it and was hooked. I wear a harness with the chin control, and I control everything, including the switch to separately trim the jib or the mainsail, all with my chin.” Soon after joining BAADS in 2008, Rubke learned how to race. In 2011 she en- tered her first international race in Cana- da, the Mobility Cup, racing single-person Access Liberty boats on Lake Ontario. “I’ve done a lot of racing, and a lot of travel for races, including Switzerland, Germany and New York. In addition to freedom and camaraderie, sailboat racing has been my reason for international travel.”

JUST DO IT Although it is an old tagline for a famous Kathi Pugh sails a boat with BAADS in San Francisco Bay. shoe company, those words ring true. If money is a problem, be sure to ask. Many they made an offer she couldn’t refuse: your silly club, but I’ll join because the programs are free, and many more offer “We can rig up a chin-control joystick so yacht club parties sound like a lot of fun discounts or scholarships. you can sail the boat.” Rubke responded, and it turns out I live two blocks from And don’t forget your National Parks “Yeah, uh-huh. I’m pretty sure you’re just BAADS headquarters.” Pass, now called the Access Pass, a free, saying that because you want me to join Sure enough, the folks at BAADS lifetime pass available to people who have a permanent disability. It provides free entry to national parks and a 50 percent discount on many park facilities, such as camping. Most states also offer a state park pass with similar discounts. Check Celebrating with your state parks department — and 25 years have a great summer! OF CONSUMER PROTECTION RESOURCES • Access Ability Wisconsin, AccessAbilityWI.org • Achieve Tahoe, achievetahoe.org • Action Trackchair, actiontrackchair.com • Adaptive Adventures, adaptiveadventures.org • Adaptive Expeditions, adaptiveexpeditions.org NATIONAL REGISTRY OF REHAB TECHNOLOGY SUPPLIERS • Adaptive Outdoorsman [Fishing Gear], adaptiveoutdoorsman.com/handicapfish- NRRTS is a professional association supporting individuals ing.html who provide Complex Rehab wheelchairs and seated • Adaptive Aquatics, nchpad.org/ positioning systems for people of all ages and diagnoses. Directories/Organizations/2883/ Adaptive~Aquatics • Bay Area Association of Disabled FOR MORE INFORMATION VISIT WWW.NRRTS.ORG Sailors, baads.org • Bay Area Outreach Program, borp.org

34 NEW MOBILITY • Bionix power assist for handcycles, ridebionx.com/products/ebike/ebike- systems/ • City of Sacramento Access Leisure, cityofsacramento.org/ParksandRec/ Recreation/Special-Needs • Challenged Athletes Foundation, challengedathletes.org • Chesapeake Region Accessible Boating, crabsailing.org • CreatingAbility, creatingability.com • Disabled Sports USA, disabledsportsusa.org • Erie Canal Boat Company, eriecanalboatcompany.com • Environmental Traveling Companions, etctrips.org • Jay Protector, sunrisemedical.com//seating-positioning/jay/cushions/protector • Kelly Brush Foundation, “Hiking is the easiest and least expensive recreation option there is, and it doesn’t require any investment other than gas to get to a trail,” says Bonnie Lewkowicz, 60, of Berkeley, California, kellybrushfoundation.org who is in her 45th year as a C5-6 quadriplegic. There are accessible trails all over the country. • Madison SCI, madisonsci.org The trick is to go out and find them. To that end, Lewkowicz created Wheelingcalscoast.org, a National Audubon Society, audubon.org wheelchair rider’s guide to California’s coast, accessible parks, trails, historical sites and other • National Parks Access Pass, store.usgs. points of interest. “Check out the website, choose a trail, take along a picnic and go,” says gov/pass/access_pass_application.pdf Lewkowicz, who is shown along with Kathi Pugh in the photo. “Cruise the trails, from coastal cliffs to redwood forests to spring wildflowers.” • National Sports Center for the Disabled, nscd.org • New Mobility, “Adaptive Out- door Adventure Sports,” newmobility. Enjoy driving com/2015/08/adaptive-sports • Ornithological Societies of North with both hands America, osnabirds.org • ReActive Adaptations, on the wheel! reactiveadaptations.com • Rochester Accessible Adventures, rochesteraccessibleadventures.org • Rock ’n Roll Adaptive Cycling Camp in Yosemite, newmobility.com/2016/10/ adaptive-cycling-yosemite/ DARIOS digital accelerator • Sail To Prevail, National Disabled Sailing ring and main Program, sailtoprevail.org hand brake • Telluride Adaptive Sports Program, - Lifetime tellurideadaptivesports.org warranty • Vermont Adaptive Ski and Sports, - Free at home vermontadaptive.org pick-up and delivery and • Vicair AllRounder, comfortcompany. free at home com/product/Comfort%20Rehab/ Wheel- service chair%20Cushions/AllRounder - DARIOS is VA accepted. • Water Skiers With Disabilities Associa- tion, usawaterski.org • Wheeling California Coast, wheelingcalscoast.org kempf-usa.com • Wilderness Inquiry, 1-888-453-6738 wildernessinquiry.org

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n late summer I felt like I was about it. Fortunately, recent re- Seth McBride tries to cool off baking myself as I pedaled by sitting in a headwind while search and practical experience Imy handcycle up a false flat. A a friend provides shade . helps to shed some light on what thunderstorm gathered along the we all can do to stay functional edge of the Cascade Mountains. in the heat. The temperature was in the mid- Let’s start with spinal cord 80s, but the air was stagnant and injuries. If you have an SCI, you thick with humidity. have issues sweating. Some peo- The heat generated by my ple sweat above the level of their working muscles congregated in injury, some sweat some below, my core, and unable to escape, some not at all. Some sweat when they’re hot, some only sweat when quickly built inside me. Ahead of they’re getting dysreflexic. Like me, my wife could not ride any the rest of your neurological func- slower and was disappearing into tion, this is all related to your level the distance. I rode at the limits of my What Science of injury and its completeness. steadily diminishing power, but my heart Tells Us About Our T6 is a big dividing line for nervous rate would barely rise. Bodies’ Heating and system function. Injuries above T6 gen- Ten minutes later she turned off the erally have a compromised sympathetic road and I followed her to rest under the Cooling Systems nervous system. Somewhere around T4 shade of an oak tree. We had ridden sev- Anyone with a neurological disability (depending on the individual and com- en miles and I could ride no more. After knows what a problem overheating can pleteness of injury), people lose the ability 20 minutes I started to feel more func- be. If you have a spinal cord injury or to sweat, even above their injury. This is tional, but I was despondent. We were multiple sclerosis in particular, chances obviously an issue for temperature regu- set to leave on a very long bike trip in the are the heat affects you far more than lation, as the evaporative cooling of sweat fall, cycling south for thousands of miles. anyone you know without a disability. is one of our body’s primary means of How was I supposed to ride through This was definitely true for me. What cooling itself. Mexico if I couldn’t even cover seven I didn’t know is why, exactly, my body But people with injuries above T6 also miles on a summer day in Washington? struggled so much, and what I could do have issues with heart rate and circula-

JUNE 2017 37 tion. We (I have a C7-8 mostly complete How Hot Is Too Hot? ing as soon as you start to cool off. For Sen, this change in function can often be injury) can’t get our heart rates as high as People with multiple sclerosis don’t have very dramatic. lower level injuries, or the nondisabled. any of the same issues with heat retention “I was in North Carolina last summer Both muscles and organs generate inter- that those with high-level spinal cord and it was extremely hot, but my friend nal heat. The body cools itself by shuttling injuries do. For those with MS, small that heat away from the core of the body changes in core temperatures — even has central air in the house and it was via circulating blood to the skin, where it what’s caused by taking a hot shower — fine,” she says. “But my friends decided can be effectively dissipated. can have significant impact on their dis- they wanted to go on this walk. I said When someone with a high level in- ease symptoms. Until recently, the test nah, I think I’m going to stay in, I know jury is sitting around (lounging by the for determining if someone had MS was how this goes. But they talked me into it. pool, in a perfect world), we have ample for doctors to measure their neurologic And as this walk proceeded, I got hotter, and we finally got back to the car and they capacity to shuttle heat from our core to state after they’d taken a warm bath. had to literally help me out of my rollator our skin. As soon as we start working Mona Sen is a trained occupational (a rolling walker) and my speech started — pushing, handcycling, impromptu therapist, author and activist who has to slur because I was so hot. I got in the dance battling, you name it — our bod- multiple sclerosis. She now lives in up- car, and the air was on full blast for about ies’ compromised circulatory capacities state New York, where it’s relatively easy three to five minutes. My speech totally come into effect. The heart’s primary came back. Everybody just sat there and responsibility is to maintain blood flow their jaws dropped. That’s how it works.” to the working muscles, and because we For those with SCI, it takes a much can’t get our heart rate high enough bigger rise in temperature before we to do much else, its other respon- start to feel the effects. Usually our sibilities get neglected. The heat core temp has to rise to about 102 we generate stays in our core, degrees or above, depending on effectively baking ourselves the individual. Unfortunately, from the inside. Metaphori- because there’s such a large cally speaking, we are both rise, it can take much longer the oven and the roast. to cool off again. If you can sweat, it ob- Joe Delagrave is an athlete viously does help cool you with C6-7 incomplete quad- — it’s one of the body’s pri- riplegia who lives in Phoenix, mary means of shedding heat. The heat we generate stays in our core, Arizona. He has learned to live But sweating is only effective effectively baking ourselves from the in an environment of extreme relative to the surface area that’s heat. Even so, Delagrave says actually perspiring. If you only pro- inside. We are the oven and the roast. that he’s had the beginning stages duced sweat on your left forearm, it of heat illness a number of times since wouldn’t be very effective for cooling off he moved to Phoenix seven years ago. He your whole body. So the higher your level says, “It happens with a combination of things — dehydration, exhaustion, just of injury, the less cooling benefit you get not being prepared for the heat.” from sweat — since people typically only to manage the heat. At her house, it rare- When it does happen, heat illness can sweat above their injury. ly gets too hot, but she still has to be careful: only going outside for short stretches be debilitating and prolonged. “It kind of With all this data, researchers now during a warm summer day; occasion- just zaps my energy, where I’m useless for consider temperature regulation in peo- ally wearing an ice vest; and always hav- the rest of the day. Lethargic,” he says. “It ple with SCI to be proportional to their ing an exit plan for the heat. She knows usually takes a handful of hours, if I get level of injury. In short, the higher your too well how much getting overheated really overheated in the early afternoon, injury, the more you’re going to have is- can affect her. either working out, or just being out run- sues with heat (and cold). Nondisabled “To me, heat is like kryptonite is to Su- ning a bunch of errands, and I can’t get people or those with low paraplegia have a perman,” she says. “I just get weak … al- into a cold shower. It can be 6 or 7 o’clock certain amount of temperature rise in hot most like the demyelination (the disease before I’ve actually cooled off.” weather or when they’re working hard, process by which MS causes neurologic but that temperature quickly settles out problems) in my body kicks in, and it’s What To Do to an elevated but manageable degree. Be- hard to move. It’s hard to walk at all … Obviously, preventing overheating is cause higher level injuries can’t circulate and my mind, it just kind of slows down.” both a challenge, and extremely impor- and dissipate heat effectively, our temper- Fortunately, the degradation in func- tant if you have a neurological disability. atures rise … and then keep rising. tion is very temporary, often disappear- In addition to heat related illnesses, for

38 NEW MOBILITY some getting too hot (or too cold) GOING GoBoldly.com can even precipitate autonomic dysreflexia. Dramatic changes in tem- AFTER perature are like any other noxious CURES stimuli. To get a better handle on the science and best practices for stay- ISN’T FOR ing functional in the heat, I talked with Elizabeth Broad, a dietician and THE FAINT sports scientist who currently works OF HEART. for U.S. Paralympics. She has decades of experience working with athletes with a variety of disabilities, and to her work, cooling strategies are of vital importance. “Overheating can be a big deterrent to being active outside for people with disabilities,” she says. “If we can work out practical ways to deal with this, then hopefully we get more people exercising!” Broad says one of the simplest strategies for keeping cool in the heat is something that gimps have been doing for a long time: misting themselves with a spray bottle filled with PhRMA is a proud supporter of the cold water. When you spray yourself, United Spinal Association. the area of your skin that the spray Welcome to the future of medicine. For all of us. touches is effectively mimicking the cooling effects of sweat. But like sweat, spray is effective relative to the surface area that’s actually wet. So spraying your face feels good, but spraying your face, neck, shoulders, arms, and whatever other skin is ex- posed, is going to do a better job of cooling you off. Spray works best when humidity is low because evaporation rates are higher. When humidity is high, the water just sits on your skin and doesn’t actually cool you. If it’s really hot, or if humidity is high, combining a spray bottle with either a natural breeze or a fan is the best way to stay cool. Paralympic handcyclists, Broad says, will fill leg stockings with ice and put them under the jersey, on the abdomen to help keep core temps from rising while they warm up for a race. Trainers will also put towels in a bucket of ice water, wring them out a bit and then put them over athletes’ heads or necks. Things like ice vests, cold wet towels, or a gel pack that you keep in the freezer and then drape around your neck feel great when you first put

JUNE 2017 39 them on. But if you don’t keep rotating Many wheelchair athletes like Joe Delagrave them or have air circulating between use spray bottles for temperature control. their external surface and your skin, the heat from your skin warms up the outer- most layer after a minute or two, creating its own little microclimate and stop- ping the cooling process. The solution to this is to either have multiple towels or neck wraps that you can rotate, or to get a breeze blowing between the external cooling source and your skin. Research has also shown that simply placing a hand in a bowl of cool water (about 50 degrees, or cold out of the tap) for 10 minutes can lower core temperatures by one degree Fahrenheit, which may not seem like a lot, but could be the difference between being worthless and somewhat functional. Precooling, or purposefully lowering your core temp before going out in way to cool yourself if you have an SCI. cooling strategies — spray, fans, ice the heat, can also be an effective strategy But taking a cold shower, drinking an stockings or towels — is the most effec- if you know you’re going to be active in ice slushy or even sitting in an overly air- tive way to stay functional in the heat for the heat for a long period of time. Most conditioned room for long enough that a long period of time. research studies have used ice baths as a you start shivering — all are effective Delagrave doesn’t typically do any pre- method for lowering core temperature, ways of lowering your core temperature. cooling, but uses a cold shower as a way which isn’t exactly the most practical Combining precooling with other of quickly cooling down his core temp if

Cincinnati, Ohio • July 17–22, 2017

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40 NEW MOBILITY he gets overheated. He does his outdoor learned that it’s possible, if painful and re- Get the BEST workouts early in the morning and car- quiring many more rest breaks, to climb catheter for YOU ries a spray bottle around with him, even hills in the same conditions. Riding long when he’s running errands in the sum- stretches in 90-degree humid tempera- with mer. He even decreases the amount of his tures was technically possible, but right Liberator Medical bladder medication, Oxybutynin, in the at the limits of my body’s ability to shed summer because one of its side effects is heat. To add significant hills to the same increased heat intolerance. In addition, conditions put my body over the top. he makes sure to stay hydrated. “I prob- You may never want to try to ride a ably drink twice the amount of water in handcycle through Mexico. But if you the summer that I do in the winter.” struggle in the heat, wheeling around town on a particularly hot summer day Testing the Limits can feel like just as monumental a task. After my ill-fated summer training ride, Like anything else with a disability, I had a friend design a spray system for learning how to better function in the my handcycle that included a water tank heat comes down to being willing to try of PVC pipe equipped with a tire valve at some different strategies, adapt them, one end and a line of automo- and see what works best for you. Are you really using the tive hosing running out the Fortunately, some simple so- best catheter for YOU? Photo courtesy of Ability 360 other. The hose ran to lutions can keep you ac- a release valve that I tive all year long. Cure UltraTM zip-tied to the seat Now go grab a Slur- . Pre-lubricated . Small, flexible package of my handcycle pee and get outside. . Smooth, polished and could oper- eyelets . Not made with DEHP, ate with one hand BPA or natural rubber before continuing latex External/Condom along to a spray Resources . Available in 100% nozzle pointed at silicone and latex • ActiveMSers.org has a comprehensive . Hydrocolloid adhesive my face and upper option wicks away body. I could fill the gear guide to the variety of cooling vests moisture from skin tank with cold water, pres- and apparel commercially available, www.activemsers.org/tipstricks/ surize it with a bike pump, and Pocket Catheter choosingacoolingvest.html . Available in extra long, then spray myself with a quick tap of the 25 inch length valve while still on the move. Quadgrips . Eliminates the need • Gatorade’s Sports Science Institute has to transfer or use is a company now selling a similar system a good overview of spinal cord injury additional extension — the QuadCool. tubing and exercise in the heat, www.gssiweb. Not knowing much about the sci- org/Article/sse-66-spinal-cord-injury- ence of cooling, when I first tried it, I was and-exercise-in-the-heat Be certain you’re amazed at how well it worked. I probably using the BEST shouldn’t have been. It allowed me to eas- catheter for you. • The Journal of Applied Physiology ily spray a relatively large surface area published this excellent research study Call a Urology of my upper body while on the move, on thermoregulation in people with Specialist today and the breeze generated by my mo- multiple sclerosis, jap.physiology.org/ to sample from these and many tion helped quickly evaporate the water, content/109/5/1531.full drawing heat out of my skin. It instantly other catheters: 1-800-247-9397 increased the temperature in which I • QuadCool is a functional cooling could comfortably ride by 10-15 degrees. spray system that can be attached to a In the process of trying to ride a handcycle. Available at Quadgrips.com handcycle through the tropics, I learned a number of things about the limits of • United Spinal’s Resource Center has my body and my temperature regula- a helpful breakdown of autonomic tion abilities. I learned that I could ride dysreflexia and how to manage it, www. 1-800-247-9397 long distances in 90-degree desert tem- spinalcord.org/resource-center/askus/ www.FreeCatheterSamples.com peratures if I consistently sprayed my- index.php?pg=kb.page&id=248 *Conditions apply. Samples have nominal value. self and stayed on top of my hydration. I BMD/DMES/0417/0324

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42 NEW MOBILITY Sebastian DeFrancesco: Out of the Rabbit Hole, Into the Light

BY CINDY HALL RANII

hen Sebastian DeFrancesco his feet sticking out of the hole, and man- Airborne School. As a Green Beret he was was an 11-year-old boy in the aged to pull him out. It would not be the deployed to northern Italy, the land of his W1960s, his dog, Pudgy, decided only time he got stuck down a rabbit hole. ancestors. “I was excited about going to to have a litter of puppies down a rabbit The Vietnam War called in 1972 — Europe. It sounded great,” he says, “but hole surrounded by a mound of dirt. One his draft lottery number was six — and as we all know, life can turn on a dime.” day, checking on her puppies, Pudgy got DeFrancesco, now 19, enlisted in the He and five other soldiers en route to a stuck in the hole. Sebastian descended Army. By this time he had distinguished jump site on a training exercise were rid- into the birthing den to attempt a rescue. himself as a standout soccer player. Wiry, ing in a jeep with no visible stars and no The puppies surrounded his face, squeak- tall, fast and fearless, he graduated from moonlight. “Those were the worst jumps ing and licking him, and before he knew Special Forces school as one of only six possible,” he says. “The most dangerous.” it, he was stuck, too. After a long three out of his original class of 300, having They never made it to the jump site. The hours, a friend came looking for him, saw trained to jump out of C-130s and jets in driver lost control, rammed into a ce- ment mileage marker and the vehicle full of soldiers went over an embankment and into a river. DeFrancesco briefly remembers being dragged from the river up the embankment before blacking out. When he came to, he saw his injured buddies, all on stretchers, in a circle in a dimly lit room. His friend Patrick Davis, on one of those stretchers, had died, but not before he had pulled DeFrancesco, who sustained a broken neck, from the river. Now 22 and a C5-6 quadriplegic, he was hospitalized in traction for five months, then in a ward with 40 beds and later in a room with nine others, some of them Korean War vets who had been there for decades. Then came rehab. He focused on fitness training and sports, but first he had to master the everyday challenges of being a quad. A steep ramp led from the cafeteria to outside. Each day he worked to go further up the ramp. It was all on him. No rehab staff pushed him to gain full independence, but inde- Sebastian DeFrancesco (right) is shown with a fellow vet at the Vietnam Veterans Memorial. pendence was his goal. When he left rehab, he had nowhere

JUNE 2017 43 to go: no long-term care facility, no acces- to get the changes enforced. ing in the Inn and apartment buildings, I sible home. “There weren’t even curb cuts In California’s Bay Area he is now was developing assets that I could give to back in those days. And I had some fear working with the owners of the War- my kids later on.” of not being able to take care of myself,” riors’ NBA Developmental League team With his focus on helping others, he says. “Finally, I found enough courage to provide appropriate line of sight seat- whether it’s his kids, other wheelchair us- to move into an apartment with another ing for wheelchair patrons at the arena ers or veterans who can use a hand up, vet, and at first an aide came in the morn- in Santa Cruz. The Mountain Winery, he is always generous with his time and ings to help us.” a concert venue, now has seating that efforts. The work that he does for the Every day he pushed himself to a all wheelchair users can appreciate, and Veterans Administration, the local Vet- track near their apartment and circled parking machines in Santa Cruz have erans Hall, and the Palo Alto Veterans lap after lap until he slumped over with been lowered so that wheelchair users Hospital, is legendary. He serves as an exhaustion. “People said I was crazy. But can reach them, all due to DeFrancesco’s executive board member of the Bay Area I knew that being stronger would make Western Paralyzed Veterans of America me healthier.” Eventually the VA outfit- and is a member of the Veterans Council, ted him with an Econoline 350 van with Santa Cruz County. His work goes well a lift and hand controls, and he took off beyond meetings to include one-to-one into his new life. counseling, workshops and coaching. He encourages newly injured veterans to try out all sports, including billiards, bocce, FACING DISABILITY basketball, rugby, track and field and table tennis. “Facing a disability is like being reborn,” Still, throughout all his years of com- says DeFrancesco. “With focus you can petition and service, DeFrancesco’s ma- do whatever you want to do, but the dis- jor role has actually been as husband and ability makes you really be aware of your father. Early on, he married and had a life choices.” child, Alicia, who is now completing her He chose to return to his athletic roots doctorate in biology at Harvard. That and began competing in local, national first marriage ended in divorce, but he and Paralympic athletics. Even a partial fell in love again and went on to marry list of his athletic accomplishments is im- Liz, who coached Paralympic swimmers. pressive. Beginning with his quad rugby After several years of marriage, they de- successes in the 1980s, he moved into cided to have children and adopted their coaching, eventually becoming assistant daughter, Emily, from China. head coach of the National Wheelchair Then came another crisis. In 1999, Rugby Teams for two seasons, was in- when he and Liz were arranging the ducted into the Wheelchair Sports Hall Sebastian and Liz DeFrancesco on their adoption of their second daughter, Anna, of Fame and named the United States wedding day. he had to take batteries of blood tests as Olympic Committee’s Athlete of the part of the process, and it was discovered Year in 1993. He was also inducted into efforts. “The world isn’t perfect,” he says, that he had hepatitis C. Down the rabbit the New England Sports Hall of Fame, “but we can make it better. Sometimes it hole, again. has competed in five Paralympic Games isn’t worth the fight. Sometimes it’s the from 1984 to 2000 and has won four way to go.” Paralympic medals and eight National or His drive to make facilities accessible THE ULTIMATE Para Pan-American Games medals. carries into his business endeavors. To- CHALLENGE DeFrancesco’s early success in sports day he is co-owner of Pacific Blue Inn in “My prognosis wasn’t good,” he says. “I led to a sense of gratitude and advocacy Santa Cruz, California, which provides cried. I didn’t want to die. I didn’t want efforts on behalf of others. Since the nine fully accessible rooms. Along with to get liver cancer. I wanted to be there 1980s he has lobbied the U.S. Congress Joe and Debbie Quigg, wheelchair users for Liz and our daughters.” The adoption regularly to improve hospitals and living who he met through wheelchair sports 37 went through, but DeFrancesco was too arrangements for veterans, particularly years ago, he founded Easy Access Devel- sick to travel to China to welcome little the homeless. Also, he has been relentless opers to increase the accessible housing Anna into the family. in pushing businesses to follow the provi- stock in Santa Cruz. Together they have Dealing with hep C over the years made sions of the ADA. He was instrumental developed multiple apartment complexes him sicker and sicker. Treatments with in ensuring that the remodel of Boston and houses. interferon were not successful. Since his Garden included upgrades to line of sight “Joe and I wanted to make a differ- liver was unable to process waste and wa- for wheelchair seating and went to court ence,” says DeFrancesco, “and by invest- ter, he ballooned from 145 pounds to 205

44 NEW MOBILITY pounds. He tried to push on his handcycle Parapan American Games in Toron- Yeah, I got the liver blues every night, but it got harder and harder. to in 2015. He won silver in the 2016 But I had a beautiful woman who took One night he could only make one turn U.S. Nationals for the quad class and care of me of the handles. “Then I knew I was getting was named to the Quad Rugby Hall of She’s 5 foot 10 with blue eyes bad, and I tried to prepare for the worst.” Fame. His family, business, advocacy I fell in love with her and she kept me No quad had ever received a liver and VA efforts are ceaseless. strong transplant, but after many trips to the lo- Today he even finds time to sing with Doctor said he’s too far gone cal hospital to have his stomach drained, Wreckless Abandon, a blues band led by She said “Hey doc, give him a chance” he was finally accepted onto three trans- his buddy, business partner, and fellow They found a liver and here I am. plant lists: UC Davis, Stanford and the quad, Joe Quigg. At a party celebrating It was the first time he’d sung in public as Mayo Clinic in Phoenix. In extremely the tenth anniversary of his liver trans- an adult, and it felt a little like being pulled poor health, he was admitted to UC Da- plant, he ad-libbed the following blues riff: out of that rabbit hole one more time. vis Hospital in hopes of receiving a liver transplant. On dialysis, he was so weak that he would not be healthy enough for surgery for much longer. His liver was like shoe leather. He was beaten down At Hollister without enough energy to even say hel- Proud Sponsor Incorporated our lo, hallucinating and seeing contorted shapes wherever he looked. mission is to make of the Roll on Several donor livers became avail- life more rewarding able but were the wrong blood types. No and dignified for Capitol Hill matches. Then a call from Stanford Hos- people who use pital came in. They had found a match- our products and ing donor liver. He was rushed to a heli- services. Our ultimate copter, but before it could take off, it was promise is to make grounded for mechanical failure. With a positive difference the drama ramping up like a thriller movie script, he was then transferred to in the journeys of an ambulance, and with Liz and Alicia in the people and the the front seat, they sped the 100 miles to communities we Palo Alto, California. serve. We share the “I was aware of what was going on,” ongoing commitment says DeFrancesco. “When they got me of the United Spinal prepped for the operation, I was joking Association to enhance with the doctor and saying, ‘Hey, lighten the quality of life of up. I’m going to get a new liver.’ But I was really in bad shape, worse than I even all people living with knew at the time,” he says. “I was right at spinal cord injuries and the end of the tunnel … close to dying.” disorders and are a But once again death would have to proud supporter of the wait. DeFrancesco got the transplant he Roll on Capitol Hill. needed, and in doing so added another accomplishment to his list: first quad to receive a liver transplant. The recovery from the ordeal took many months, and during that time, his weight went down to a mere 98 pounds. He struggled to regain his health. Finally, in 2013, when new hep C treatments became available, he was cured. Now 63 and 10 years post-trans- Continence Care People First plant, he is as active as ever before. He has circled back to sports, competing regularly in table tennis, including the

JUNE 2017 45 MOTORVATION

Accessible Power Boats for Fishing

By Uncle Mike

spinal cord injury in 2011, he made a point of getting back out on the water as soon as possible once released from rehabilitation. He purchased a smaller boat, but soon upgraded to one that was able to travel at higher speeds and had more room and capabilities. Holland purchased his craft from ADA Boats are built to be Willie Boats of Central Point, Oregon, accessible and and made the modifications he needed stable so all to one of their sturdy aluminum boats. you have to worry about “I started by drawing up my new dream is how to land boat with a stepped swim deck and that big one. custom side console that I could roll up to, and a ramp up to the front casting deck,” he says. “I’ve had this boat for a couple of years now and it works great for me. Now I’m able to get out on the water on hot days and take a swim to s the weather warms, many indi- boarding or operation by individuals cool off.” Willie Boats also manufactures viduals who use hand controls who use wheelchairs or are otherwise a ramped accessible drift boat that to drive motorized vehicles seek unable to walk. Some are constructed appears roomy enough to accommo- out recreational opportunities in that manner, and at other times date two manual wheelchairs. onA the water. Many features of stan- individuals make modifications to meet When it comes to fishing, Rory their particular needs. dard boat controls are similar to hand Calhoun required a boat with plenty When Donald Holland, a fisherman controls used for driving on land; the of versatility for the different locations from Placerville, California, sustained a operator’s station usually has no foot and types of fishing he and his family controls, unless it is a high-powered enjoy. Calhoun administers grants that racing boat of some type, while the improve access to outdoor recreation gear shift and throttle are often con- in Washington State, and on his days trolled with the operation of a single off he can frequently be found fish- lever. Remotely operated accessories ing on rivers, lakes or the ocean in the like trolling motors for fishing make Pacific Northwest. it possible for people with all types of Some of Calhoun’s fishing trips disabilities to get out on the water, require the ability to handle rough sometimes independently. waves and bad weather up to 50 Fishing is one of the most popular miles offshore in the Pacific Ocean uses for power boats, as they provide while seeking tuna, salmon or halibut. an opportunity to reach the best fish- At other times he is hauling in traps ing grounds without being restricted containing crab or shrimp on more to fishing from a single location on protected waters. While it is possible to shore or a pier. A variety of boats used Donald Holland says his modified dream boat fish with an open-topped boat in those for fishing have been adapted to allow works great for him. locations, something with an enclosed

46 NEW MOBILITY Left: Rory Calhoun enjoys shrimping with his family. Above: Calhoun’s cabin has been modified with double doors to accommodate his manual wheelchair. cabin makes the most sense, for both independently. “I had the power tilt and of gaining access: “I just transfer onto comfort and safety. start/stop switch for the kicker, or troll- the side of the boat and then my chair is The boat he purchased from North ing, motor added inside the boat where loaded in and I transfer back down into River Boats of Roseburg, Oregon, has an I could reach it, along with a Garmin it and roll away. Getting out, I reverse the enclosed cabin along with an open back remote control autopilot that is program- process, only I use the crab trap puller deck for fishing. It has been modified with mable by GPS to steer itself while trolling boom (swung out over the dock area) to double doors into the cabin in order to a pre-set course,” he explains,” or I drive allow me to pull up on the lift to transfer accommodate Calhoun’s manual wheel- with a pushbutton control.” back into the chair on the dock.” He says chair. He has done a few other things Since his boat has no ramped entry, the process works for any active para, to make it possible for him to operate it Calhoun has devised a simpler means and for quads with some help. BEACH MOBILITY Solutions

www.wheeleez.com

JUNE 2017 47 warning, the driver ‘gunned’ the boat and my manual wheelchair flipped Did You over — imagine how surprised I was.” Although he was not injured, the per- KNOW... son operating the boat was probably just as surprised. ADA Boats of Fort Myers, Florida, sells a purpose-built, wheelchair accessible catamaran that was in development for five years so that it would be extremely safe. Mike Mayes, president and founder of the company, insisted on high standards so it would be completely safe for its occupants. The largest model, 20 feet in length, has enough capacity to carry two power This beautiful lunker was caught by Dwight wheelchairs plus additional passengers, Disability Bateman on his Stratos bass boat. etiquette and can float in just 3 inches of water. Many people can get their needs for Tips On Interacting With People With Disabilities The front of the boat is ramped, which a fishing boat met with fewer modifica- Understanding the (ADA) makes loading and unloading wheel- Americans with Disabilities Act tions. Dwight Bateman, a grant admin- chairs very easy. The boat has been istrator for the California Department thoroughly tested, including a load test Of Rehabilitation, describes himself as a that far exceeded the weight of a full “waddling quad” — as he can stand for load of occupants, to assure that the brief periods but uses a power chair. He boat would not sink under conditions of Fire Safety for Wheelchair requires only a Stratos Bass Boat, 75-hp normal use. Users at Work and at Home Mercury outboard and a self-deploying Those interested in purchasing a MinnKota Ulterra80 Bow-Mount Trolling boat for use in fishing, or for any pur- A Publication of Motor with i-Pilot Link and Spot-Lock with foot paddle and hand-held remote. Bateman lives near the Sacramento River Delta, which offers prime fishing for bass and several other species. The

A Publication of only other accommodations needed to allow him to fish are a step stool to get into the boat and an ice chest with a flat lid to scoot across to reach the fishing United Spinal Association seat in the bow. A 24-foot pontoon boat — or longer — works produces more than 30 While his favorite fishing companion best for J.R. Harding. is his dog, Bateman advises to always brochures and pamphlets fish with a partner in case something pose, should check out the resource list on subjects like Disability goes wrong. One of his cardinal rules, below, as well as the links that appear which everyone involved in boating after an internet browser search for Etiquette, Fire Safety needs to follow, is to always wear a per- accessible boats. for Wheelchair Users sonal flotation device or life jacket while A future Motorvation column will cover more of the wide variety of at Work and Home and on the water. Although he is not a boat owner, accessible power boats for fishing and Understanding the ADA. J.R. Harding, a quad from Tallahassee, cruising, including some luxury models You can download them Florida, has found that a 24-foot pon- capable of reaching highway speeds.

for FREE or order printed toon boat or larger works well for getting him out onto the water to fish Resources copies on our website at or just enjoy a ride. Through personal • ADA Boats, www.adaboats.com www.unitedspinal.org experience, he has also found that the • North River Boats, driver of the boat must be careful riding www.northriverboats.com the waves, accelerating and so forth, • Stratos Boats, www.stratosboats.com because, as he says, “once, without • Willie Boats, www.willieboats.com

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NewMobility.indd 1 4/26/17 1:32 PM RAISING A RUCKUS

“If you are a male in a wheelchair, how can you project a manly image in such an overly masculine world?”

By Allen Rucker The Alpha Male is Back

e are now in the era of soon, so stash those virtues away. or you can take a short cut and simply super-duper machismo, Let’s face it, for most of us, it is aspire to the demeanor of a psychotic with Donald Trump leading hard playing a tough guy in a chair. ex-con. For style tips, see the MSNBC the charge. As one of his Everything you need to fake your way prison series, Lock Up. Lose a couple of Waides recently said, “The Alpha male is through a tough guy confrontation — front teeth, surgically remove half of back!” Forget the orange hair and bottle the eye-to-eye glare, the menacing, your left ear, and cover every inch of tan, Trump is the most macho-acting too-close body language, the ability to your face and body with menacing tat- man to take the reins of power since snatch a chair and whack your opponent toos, including one on the back of your wood-chomping Ronald Reagan. He over the head — are all hard to do while shaved head reading, “Ready To Die?” has no problems “down there,” as he sitting. You may have once been in a Even in a chair, someone with a Charley announced, and he’s supremely confi- situation where you wanted to hit some Manson “X” hand-carved between his dent, takes no guff from anyone, and of punk in the nose, only to realize that eyebrows will get the Alpha hand stamp course, has oodles of the do-re-mi. you’d first have to ask him to get within just rolling into the room. But it’s not just Trump. Bill O’Reilly, arm’s length from your chair and then Your other road to salvation is currently unemployed, has had an kneel down with his chin protruding. It easier: Facebook. Facebook allows you unapologetic, in-your-stupid-liberal-face kind of loses the element of surprise. to express your dirty-T-shirt maleness personality for years. And then there’s I was raised in small-town Oklahoma, without ever leaving the comfort of your Dwayne “The Rock” Johnson, currently where men have never ceased being dirty-T-shirt apartment. If you don’t want the biggest box office draw in the world. chaw-chewing, dirty-joke-telling, gun- to get tatted up like a lifer, use peel-off Or the whole crew of the most popu- toting, boar-killing, steak-gorging men. tats and those fun, Halloween facial scars lar movie in the galaxy, The Fate of the It’s a cliché, sure, but the truth is even for your Facebook profile. Photoshop Furious. We haven’t had so many icons stranger. Wandering off the reservation, your arm around Pamela Anderson or as of virility since Rocky roamed the earth. I moved to California, enough said, and To the point, and it’s a thorny one: then became paralyzed. Out went the Mr. July in the Fireman’s Bare-All calen- If you are a male in a wheelchair, and steel-tipped cowboy boots and the half- dar. It’s amazing what they can do with lack the use of some of your extremities, friendly, half-intimidating back slap. I CGI these days. how can you project a manly image in was forced to man down. On the other hand, maybe you hate such an overtly masculine world? Of There are a couple of ways out of this Facebook and don’t look good as a course, there are male chair users doing dilemma, to my thinking, though you snaggle-toothed serial killer. Then your uber-aggressive sports, like indoor may have your own. wisest course is to remain cool and rugby, indoor basketball, and indoor bull Number one, you can take an act- memorize your lawyer’s cell number. If fighting, for all I know. But how does the ing class, then adopt the persona of the some nondisabled troglodyte challenges average male wheelchair user broadcast flinty-eyed hombre you always wanted your manhood and is stupid enough to his masculinity? Don’t say through quiet to be. You could spend years trying to hit a guy in a wheelchair, he’ll soon be courage or stoic mettle or magnanimous beef up like The Rock or even become in jail having his own manhood chal- empathy for others. That stuff only cuts it the first wheelchair-using pro wrestler lenged. And with the fat settlement, in a feminist age, which may be coming — call yourself “The Wheel of Pain” — you’ll be checking into Mar-a-Lago.

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JUNE 2017 51 MARKETPLACE

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52 NEW MOBILITY MARKETPLACE MARKETPLACE

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NEW SEATING! VIBERECT • Treats men with erectile dysfunction • Pressure relieving • Treats SCI men with ejaculatory dysfunction. • Injection Molded foam • 25% better than ensolite $200 OFF FERTICARE • Outlasts steel or aluminum • Multi-configurable tub/shower/toilet • Options: Carry case, flat or 10% OFF VIBERECT commode seats, free standing (OR ANY OTHER PRODUCT WE SELL) leg support FERTI CARE® PERSONAL • Optional leg support shown on product above • The Ferticare personal treats men with ejaclatory dysfunction and woman with orgazmic dysfunction/ vaginal dryness. • FDA approved/ VA approved. • Inexpensive alternative to fertility clinics. • Ab Crunch • Single-dual curls • Can also help with incontinence • High bicep curl thru Kegel Exercise. • Single & dual tricep pulldown • Tricep extension • Lat pulldown • Multi-level row NEW (Not FDA approved for sale EXERCISES! inside the USA for incontinence) • Bench & incline press • Pec fly • Dumbell pec fly Orion Medical Group, Inc. + MORE (Full D.M.E. Pharmacy Specializing S.C.I) Tel. 714-649-9284 / 1-888-64-ORION (67466) VA Approved • Limited Lifetime Warranty Fax. 714-594-4038 [email protected] WWW.APEXEQ.COM • 800-851-1122 www.medicalvibrator.com

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Invacare proudly supports individuals with complex mobility needs, preserving their rights and access to mobility products.

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The Tek Robotic Mobilization (RMD) allows users to independently sit, stand and navigate environments that were once inaccessible - all while standing at eye level. braunability.com Learn more at ©2017 Invacare Corporation. All rights reserved. Trademarks are identified by the ShopNumotion.com symbols ™ and ®. All trademarks are owned by or licensed to Invacare Corporation 844-297-9410 unless otherwise noted. 17-109 170415

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Independence…Rediscovered. SmartDrive® is an elegant and lightweight For more information contact power assist device. The new PushTracker band combines fine grained SmartDrive® Coloplast at www.coloplast.us control with activity monitoring, giving greater freedom to chair users than ever before. Visit Max-Mobility.com to learn more.

M7519N 05.17 American Airlines, the Flight Symbol logo and the Tail Design are marks of American Airlines, Inc. oneworld is a mark of the oneworld Alliance, LLC. © 2016 American Airlines, Inc. All rights reserved.

54 NEW MOBILITY 17-MM-0003 M2 bb 2.25x4.75 ad.indd 1 5/3/17 5:16 PM CLASSIFIEDS

FOR SALE VACATIONS

Permobil Chairman HD3 Electric On The Beach Los Cabos, Mexico a special thanks to those that support Wheelchair Excellent condition. Used for 1 Ultimate accessible vacation. Get out yr. This chair tilts, reclines and elevates Max of the cold! On the beach, totally seam- weight 400 lbs. For additional information contact 973-934-1391 for photos. Asking less and barrier free. All the toys, power $3800.00 beach chair, accommodations, pool, and boats are completely wheelchair acces- Nationwide Wheelchair Van Rentals. For sible. Designed and constructed by a the next time you want to get out, vacation, doctors appointment, or try before C-6/7 quad. Visit www.vrbo.com/669234 PREMIER LEVEL you buy. Learn more at www.BLVD.com http://www.vrbo.com/910690 http:// www.bajaenterprises.net/ Wellspect HealthCare’s LoFric® Origo™ is designed to Over 1500 wheelchair Accessible provide safe, hygienic and convenient catheterization – Vehicles for sale at one website. A Ocean-front condo, wheelchair friendly, complete selection of New, Used and Pre- and is NOW available in STRAIGHT TIP! Contact us for sleeps six, pool, boardwalk to beach. Rents Owned wheelchair vehicles from dealers FREE samples. 855/456-3742 or www.wellspect.us and private parties nationwide. Check it daily, weekly, monthly. St. Simons Is., GA. out today. www.blvd.com [email protected] 419-569-6114. LEADER 40’ ft 2000 Beaver Patriot Motor Home. Cape May farmhouse near beach. First NEW Low Price! Immaculate – REALLY Abbvie, www.abbvie.com floor entirely wheelchair accessible. Sleeps LOADED!!! – only 84,000 miles! LIKE NEW, eight. Visit www.beautifullyaccessible.com ONLY $70,000. 2 slide outs, Caterpillar Hollister: The Onli hydrophilic catheter from Hollis- Diesel, Pusher 3126B Truck Engine, for more info and reservations. ter is designed to provide a hassle-free and mess- SuperArm, Roll-In Shower / HC Bathroom, free experience. Request a sample at 888/740-8999 Hand Controls & Digi-Pad. Call or e-mail or hollister.com/onli for any additional info and pictures. Cell Accessible Journeys (951) 218-4023 ~ Ask for William. Email: making the world more [email protected] accessible since 1985 Holland’s Spring Tulips ASSOCIATE USA Jeans makes pants designed for sitting. Call Darlene at 800-935-5170 or visit Rhine River Cruises AdvaMed: Failure of a wound to heal can have www.USAJeans.net Barcelona & Madrid a profound effect on QOL. MedTech has helped Venice & Ljubljana evolve wound treatment, reducing complications Accessible Italy by train WANTED and improving QOL. www.lifechanginginnovation.org Vietnam-Thailand-Cambodia

Wanted, used Quickie II --- the older the Kenya-Tanzania-Zambia-South Africa better. [email protected] Allergan: www.botox.com 800.846.4537 www.accessiblejourneys.com ISO Hill-Rom: Trusted in the hospital, trusted at home. Call a Patient Advocate today. 800/833-4291, Gentleman looking to get a letter from a homecare.hill-rom.com penpal. Write to Gary Cooper, 600 E. Perry TO PLACE A CLASSIFIED St. Rossville, Kansas 66533 AD IN NEW MOBILITY NMEDA: NMEDA provides adaptive transportation Call 800-404-2898, ext. 7253 solutions for you, your family, or caregivers. Contact VACATIONS or email your request to [email protected] your local NMEDA Dealer today: 800/833- 0427, Florida Keys! Accessible 2 /bedroom www.nmeda.com Waterfront Home, Large Bathroom with Print Rates: Roll-In Shower. Spectacular View, Resort • $1.30 per word Amenities included. 561-627-1941. • $1.00 per word www.placidaccess.com for USA Members SUPPORTERS

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Vacation EVER” (by those who stay The Krist Law Firm, P.C., www.houstoninjurylawyer.com here). Visit www.vrbo.com/434500... • Pre-Payment Required: Michigan Auto Law, www.michiganautolaw.com/ read the reviews! VISA, MasterCard, AMEX, Discover personal-injuries/back-injury/spinal-cord-injuries New Zealand disability vehicles, hand Rare Patient Voice, www.rarepatientvoice.com control cars, left foot accelerator cars for • All Paid Print Classifieds get a Trusted Mobility, www.trustedmobilityrepair.com 1 month FREE Web Classified hire. Explore New Zealand – we make it easy! We are happy to pass on our for- Online Only Rate: mer clients’ recommendations of acces- 1 month = $16 For more information on how you can support United Spinal sible activities and accommodation. See 3 months = $36 and become a business member, please contact Megan Lee at www.freedom mobility.co.nz Old 6 months = $72 [email protected] or 718/803-3782, ext. 7253.

9 months = $108 Acknowledgements on our website, in New Mobility, in United Orchard Beach, Maine First floor entire- 12 months = $144 Spinal e-news or any other United Spinal publication should not be ly wheelchair accessible. House sleeps considered as endorsements of any product or service. 10. Visit www.dunegrasscottage.com newmobility.com/classifieds

JUNE 2017 55 CRIP BUZZ THE BEST OF DISABILITY BLOGS AND BANTER

SAY WHAT? Harrell on New Mobility’s Facebook page. Sometimes doctors don’t know best, “I’m quadriplegic and have had two chil- as was seen on the May 10 episode of dren and [am] innovative in learning to care The Doctors when the panel of medical for them! People who spend their daily experts expressed shock and disap- living activities having to find accommo- proval that a woman with quadriplegia dations in a generally unaccommodating chose to become a mom via in vitro world become quite resourceful!” fertilization. “Great Grandmother of God! The only “I understand her desire to have a baby,” says ob/gyn Dr. ‘ethical’ question here would be why the @#$%! these Nitra Landry on the show, “But I don’t agree with it. I feel as television pundits think it’s any of their blessed business though it’s unfair to the baby.” The panel sensationalized stan- who does or does not have a baby,” commented Starr dard accommodations such as the woman’s mom agreeing Luteri. “It’s the family’s business, and from the information to help with some of the personal assistance and even with presented here, the family is fine. So no one else has any the woman’s use of pillows to lay her son on. They don’t even say in the matter. Period.” name the woman, and muse about “when IVF goes too far.” Watch the episode here: www.thedoctorstv.com/ “It’s not their decision to make!” said Julie Caldwell articles/4121-quadriplegic-mother-has-baby-via-ivf

MY RECENT EXPERIENCE FLYING WITH THE GIFT OF MOBILITY MY POWER CHAIR “Six-year-old Tipra from north Yogyakarta, Indonesia, was born I read everything I could find with tips and advice for flying with CP. For the past year, as he’s seen all of his friends transi- with a power chair. I relied on friends who had experience tion into kindergarten, his only wish has been to join them at to give me advice on what I needed to do ahead of time and school. Unfortunately without access to a wheelchair this was what to do when boarding the a impossibility. Until now! He came by the Ohana warehouse plane. I spoke to the American where we just Airlines Special Assistance agent fitted him for and had everything ready to his first chair, he wrap and protect my joystick. couldn’t stop gig- And I took a direct flight to limit gling as we rolled the number of times that my him around and wheelchair would need to be all he kept asking moved. I was ready on March 23, was “I get to go to 2017 to start my adventure. school now?!” Yes The results were a mixed bag. little buddy, yes With duct tape and a bun- My chair did sustain damage, you do! gee cord, this joystick still but it was not inoperable. The The crew here operates. majority of staff from American at Ohana and Christiaan “Otter” Bailey and young Tipra at Global Mobility’s Ohana Warehouse. “Ohana” Airlines were very helpful and well trained. Transfers to the Global Mobility are is a Hawaiian word for “family.” aisle chair and into the seat were smooth and the aisle chair doing stellar work, was in good condition on the trip out and on the trip back. and as long as they are out in this world giving the gift of mo- — Sheri Denkensohn-Trott, www.newmobility. bility, I’ve got their back! com/2017/05/flying-power-chair/ — Christiaan “Otter” Bailey, via a Facebook post

56 NEW MOBILITY SHOULDN’T BE AN AFTERTHOUGHT

WITH STEALTH AUTHENTIC, quality, ingenuity and innovative design come standard. You deserve top-of-the-line products, and Stealth Authentic lets you customize your ride based on your individual needs and preferences. From comfort and durability to safety and intelligence, we have an entire line of products to help maximize your mobility and enhance your daily life. Be sure to check out our products today. Choose Stealth Authentic…truly an original. stealthproducts.com 20º OF ANTERIOR TILT

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