NM's People of the Year

Ogo Mobility Device Artist Richard Bell Adoption Options

life beyond wheels

Wheeling Forward: NM’s People of the Year

Alex Elegudin & Yannick Benjamin

newmobility.com JAN 2018 $4 DO YOU HAVE A RELIABLE SOLUTION TO YOUR BOWEL PROGRAM?

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

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

LLC CEO-TWO is a registered trademark of Beutlich® Pharmaceuticals, LLC. CCA 469 1114 THE 4FRONT TM OF A NEW ERA

“I have been using a wheelchair for 35 years now – all different types – and the 4Front is by far the most advanced, comfortable and maneuverable chair I have ever driven.”

– Stewart Lundy

“The most advanced, comfortable and maneuverable chair...ever!”

Take the 4Front TM challenge and test drive one today.

(US) 866-800-2002 • (Canada) 888-570-1113 • quantumrehab.com • tfyi Serving the Community Since 1979 Products Answers Fun Abilities Expo Checks All the Boxes: Latest products and services Access to community experts Informative workshops Tools for seniors Adaptive sports FREE Inclusive dance ADMISSION Assistance animals Facts about therapeutic cannabis Fun activities for kids of all ages

Toronto Los Angeles New York Metro Chicago January 19-21, 2018 February 23-25, 2018 May 4-6, 2018 June 29-July 1, 2018 Houston Boston San Mateo DC Metro August 3-5, 2018 September 21-23, 2018 October 26-28, 2018 Nov. 30-Dec. 2, 2018

NewMobility.indd 2 11/6/17 2:36 PM CONTENTSIssue 292 - January 2018

life beyond wheels

COVER STORY PEOPLE OF THE YEAR Alex Elegudin and Yannick Benjamin met in rehab 15 years ago and forged a bond over a commit- ment to improve support systems for people with SCI. With innovative programs and services, their 24 nonprofit, Wheeling Forward, has done just that for thousands. SETH MCBRIDE shows how their distinct styles complement each other and how their selfless approach has built a tight-knit New York community.

Cover and Contents Photos by Anabella Veress

FEATURES DEPARTMENTS 4 BULLY PULPIT 16 A PASSION FOR ART 6 LETTERS Richard Bell didn’t fully embrace his passion for art until 8 NEWS after his SCI, and JENNI GOLD reports he is not wasting any time making the most of it. 9 PUBLISHER’S NOTE 10 EAT WELL 20 THE OGO IS HERE 11 REFRAMED Fast, responsive, fun — and a little dangerous. BOB 12 GEAR HACKS VOGEL checks out the Ogo and other Segway modifications offering wheelers new mobility options. 14 HOW WE ROLL 40 MOTORVATION 32 THE ADOPTION OPTION 42 RESEARCH MATTERS BRIGHAM FORDHAM shares the highs and lows of going through the adoption process twice, and why you 47 CLASSIFIEDS shouldn’t let a spinal cord injury stop you. 48 CRIP BUZZ life beyond wheels

BULLYBy Tim PULPITGilmer

NEW MOBILITY IS THE MONTHLY MAGAZINE OF UNITED SPINAL ASSOCIATION

PRESIDENT & CEO: JAMES WEISMAN VP OF PUBLICATIONS: JEAN DOBBS WOUND THERAPY ‘MARATHON’ The good news: I don’t have urethral cancer. faces it needs a working support system, just The bad news: My body has sprung a leak — like a marathoner needs those helpers along EDITORIAL a small stage II pressure sore erupted over- the 26.2-mile course who hand out water PUBLISHER: JEAN DOBBS night into a complex stage IV sore. While all and snacks at strategic intervals. EDITOR: TIM GILMER seemed well on the surface — even to home NM’s senior editor, Ian Ruder, has been MANAGING EDITOR: JOSIE BYZEK health nurses — undermining and tunnel- stellar in feeding me helpful info and en- SENIOR EDITOR: IAN RUDER ing had been doing its dirty work unseen. couragement. Richard Holicky’s article on ASSOCIATE EDITOR: SETH MCBRIDE Many of you know the prognosis: months how to survive longterm bed confinement SENIOR CORRESPONDENT: BOB VOGEL confined to bed, followed by flap surgery [“Staying Positive: How to Survive Medical and more months in bed. So now, instead Complications,” April 2012] has given me of worrying that cancer may kill me in less CUSTOMER SERVICE hope. And United Spinal’s Resource Center than a year, I get to watch my quality of life put me in touch with Tricia Litzinger, wound Toll-free 800/404-2898, ext. 7203 slip away, day by day, for several months. care nurse and therapy bed expert, who is Whoever came up with “bed rest” as giving me an eye-opening education. a medical treatment? The same doctors ADVERTISING SALES who believed in bloodletting? Many of you 718/803-3782 know the effects of prolonged down time: MANAGER, CORPORATE RELATIONS: “Complex wound care loss of muscle mass and bone density, po- MEGAN LEE, EXT. 7253 tential skin breakdown in areas other than is the neglected child in AD MATERIALS: DEANNA FIKE, EXT. 7250 the off-loaded sore, poor digestion, pos- the health care family.” PRODUCTION sible infection, diarrhea from IV infusion PRODUCTION MANAGER: DEANNA FIKE therapy, loss of income from missed work, and depression. Ironically, it’s kind of like CIRCULATION chemo and cancer; if the disease doesn’t Prescribing bed confinement to heal complex stage III and IV pressure wounds CIRCULATION MANAGER: kill you, the treatment may. BEVERLY SMITH But I am just pissed off enough to fight can be challenging, says Litzinger, since no CIRCULATION COORDINATOR: my way through it. Complex wound care is recognized standards currently exist for MARIA KURTZ the neglected child in the health care family, evaluating the multitude of mattresses and with too few doctors practicing it, too few beds that claim to promote wound healing. POSTMASTER: Send address changes to New wound care nurses and clinics, and too few The result is nurses and doctors often can’t Mobility, 120-34 Queens Blvd, #320, Kew Gardens NY 11415. Subscription rates: $27.95/year; $35.95/ proven wound care treatments. It took me distinguish between products that are rehab year in Canada; $67.95/year international via six weeks to get into a wound care clinic, grade and others that are “pharmacy” grade airmail. New Mobility (ISSN 1086-4741), Volume 29, Issue 292, is published monthly by United another six weeks to be seen by a plastic — and insurance is slow to approve the most Spinal Association, 120-34 Queens Blvd, #320, surgeon, and I’m still fighting insurance to effective products, which are costly. Kew Gardens NY 11415. Copyright 2018, all rights get an appropriate wound therapy bed. Currently the National Pressure Ulcer reserved. Reproduction without permission of any material contained herein is strictly prohibited. We Meanwhile the threat of infection rises. Advisory Panel is developing evaluation welcome comments; we reserve the right to edit Fortunately, I have the support of col- standards, a project that began way back submissions. leagues on staff and a dedicated wife. With in 2001. In the meantime, if you have a Periodicals postage paid at Flushing, NY and additional mailing offices. their combined experience and help, I will complex wound like mine and need help, get through this latest health crisis. Heal- contact the United Spinal Resource Center www.newmobility.com ing a complex stage IV wound and keeping or send me a message. You will need all the www.unitedspinal.org it healed is a marathon, and everyone who support you can get in this marathon.

4 NEW MOBILITY life beyond wheels

CONTRIBUTORSOur Staff and Freelancers CONTRIBUTING EDITORS MICHAEL COLLINS MIKE ERVIN ROXANNE FURLONG ALEX GHENIS life beyond wheels RICHARD HOLICKY KATE MATELAN ALLEN RUCKER ROBERT SAMUELS JENNI GOLD ERIC STAMPFLI Writer, editor, director, speaker, advocate — Jenni Gold wears ELLEN STOHL many hats. A wheelchair user since the age of 7 because of BOB VOGEL muscular dystrophy, Gold is an award-winning filmmaker and LOREN WORTHINGTON director member of the Directors Guild of America. She is the founder of Gold Pictures, a production company that recently produced the feature films CinemAbility and Aaah Roach. Gold COMMUNITY PARTNERS launched, “The Gold Test,” as a standard for Hollywood content KIM ANDERSON creators who are incorporating disabled characters. Her passion CHRISTIAAN “OTTER” BAILEY for storytelling and entertaining while enlightening an audience is MARTY BALL clearly evident in her work and achievements. TIFFINY CARLSON LAWRENCE CARTER-LONG RORY COOPER BRIGHAM FORDHAM JASON DASILVA Brigham Fordham is a law professor and attorney living in Phoe- DEBORAH DAVIS nix, Arizona. His research has explored the legal ramifications of TOBIAS FORREST freak shows, the intersection between new genetic technologies JENNIFER FRENCH and disability, and the ways that personal injury law affects how ALLISON CAMERON GRAY people view disability. In addition to teaching and writing, Ford- MINNA HONG ham assists private clients with intellectual property questions. MARK JOHNSON Fordham broke his neck as a teenager and is a C5-6 quad. He GARY KARP studied literature at the University of Utah and law at UC Berke- NANCY BECKER KENNEDY ley. He has been a New Mobility reader since the beginning. His CORY LEE research papers are available online: ssrn.com/author=1126862. BRITTANY MARTIN LINDA MASTANDREA LYNN MURRAY KATE WILLETTE ASHLEY LYN OLSON Kate Willette’s most recent book, Don’t Call It a Miracle, TEAL SHERER was commissioned by the Christopher and Dana Reeve TARI HARTMAN SQUIRE Foundation. Since her husband’s C6 injury in 2001, she MITCH TEPPER has become a lively voice informing a worldwide commu- REVECA TORRES nity of people living with paralysis about the state of SCI ANTHONY TUSLER research. When Willette isn’t roaming around Seattle’s KARY WRIGHT Capitol Hill neighborhood with her dog, Utah, she’s usually at her desk, spinning new plans to comfort the dis- turbed and disturb the comfortable.

UNITED SPINAL BOARD OF DIRECTORS:

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

JANUARY 2018 5 SHARE “The lift is a practical solution to a real problem.” life beyond wheels

2017-2018 Consumer Guide

A Needed Lift Our writer responds: The width of the fly opening on size large Glidewear shorts is I wrote to several hotel and travel 5.25 inches, which is 1.25 inches wider entities about this problem [“An End than on standard underwear. And since newmobility.com NOV 2017 $4 to Too-High Hotel Beds?” November the opening is horizontal rather than 2017] a few years ago but did not get vertical, it makes cathing easier than a response. We stayed at a Hyatt Va- standard underwear. — Bob Vogel cation Club property a few years ago. The bed was so high that my husband, a C6-7 quad, had no chance of getting Flexrim a Winner into it. I called the front desk and The Flexrims are great [“Pushrim they came and removed the four-post Options for Better Performance,” bed frame, and then used the original November 2017]. You can push using bed frame. That solved the problem. only your thumb, and you don’t need I can’t believe the high-end resort in to grip the rim. The concern is that Hawaii didn’t have that option. Good the rubber pushrim usually only lasts Hope for Access luck to you with this product! about a year, and then gets thin or Finally, a real world tool where people Katy Props disconnects from the rim. The good with disabilities can add comments and NewMobility.com news is that you can send them to even photos describing what acces- Flexrim, and they will return a like- sible features are available at public Bed Requirements new wheel for $100. Would Help locations [“Building an Accessible Map Richard St. Denis for Everyone,” November 2017]. Now, The PHRAME lift is a practical solu- NewMobility.com it will be up to those of us who need tion to a real problem [“An End to these features to provide accurate Too-High Hotel Beds?”]. With hotels, I input to the app. Over time, businesses always ensure that beds in designated The Wheelie Upcharge that provide proper accessibility will be accessible rooms not be platformed, It would sure be nice if we could buy rewarded with more sales as patrons precisely so a Hoyer or other lift can home gyms in the same price range with disabilities are more knowledge- be utilized. It’s frustrating that every that ambulatory people are able to able about where they are welcome. other similar element is assigned a [“7 Budget-Friendly Products for Jim Costello height or other “scoping” require- a High-Performance Home Gym,” NewMobility.com ment, but not beds. November 2017]. To get a system Luis Androuin with no bench and upper body items NewMobility.com like flys and a pull-down lat bar is $5- Give Insurance a Shot 8,000 for the disabled. For the rest In my experience, the options in the Underwear Access? of the human race, it’s as cheap as article [“Wheelchair Add-Ons to How easy is it to access your penis for $1-2,000 for a really nice set-up. It’s Make Commuting Easier,” November cathing? [“GlideWear Skin Protection like we’re being punished and taken 2017] are all private money options. It Underwear is Shear Genius,” Novem- advantage of, just so they can bill doesn’t hurt to try insurance, though. ber 2017]. I can see a slight opening in Medicare or a rehab center five times All they can do is deny it. If you work the picture, but it seems a little tight as much. They charge more to take full time, your insurance will some- and I can imagine a wrestling match out or leave off the simplest, cheapest times grant exceptions and pay for trying to access that area. part of the equipment — a bench! things that will help you. Franklin Elieh Mark Imwho Samuel David Self NewMobility.com NewMobility.com NewMobility.com

6 NEW MOBILITY NOW AVAILABLE Life is unpredictable... Trusted, recommended The new solution in Your mobility device and proven therapeutic air cushions shouldn’t be • Reduces pressure on skin and soft tissues • More stability & more durability • Better Air retention therapeutic • Easier to clean - no retention of smell • Customizable to the user’s needs AIR • Available with Standard 2-way stretch cover, 3D mesh cover CUSHION or incontinence cover

Amysystems and CG Air are Inc. brands HCPCS codes : E2622, E2623 Phone: +1 450 424-0288 | Fax: +1 450 424-7211 [email protected] | amysystems.com

2017 Oct - Amy Alltrack + CG-Air- Add - Print - 20.indd 1 2017-12-06 3:27 PM FROM THE MEMBER BENEFITS unitedspinal.org PUBLISHERBy Jean Dobbs United Spinal Association is dedicated to enhancing the quality of life of all people living with spinal cord injuries and disorders (SCI/D) by providing programs and services f you’ve reached this page, you Research Matters: Kate Willette is that that maximize independence and have probably already noticed that rare writer who turns in a sample col- enable people to be active in their we’ve redesigned our departments umn so polished that the editors literally communities. and columns for 2018. We hope the spend an hour exchanging complimen- freshI look will not only be easy on the tary emails about it. The fact that this BENEFITS INCLUDE: eyes, but also better emphasize the role column elucidates spinal cord research of our parent organization, United Spinal with the perfect NM voice means that Personalized Advice and Guidance Association. Moving forward, you’ll see we are officially rebooting our quarterly Peer Support more resources, advocacy initiatives, coverage of scientists working to restore news and events highlighted, like the function after SCI — what some folks call Advocacy and Public Policy hurricane response box on the next page. “cure research.” You’ll be surprised at We are also excited to introduce how fun it is to read. Page 42. Veterans Benefits Counseling several new sections this month — plus Please Remain Seated: On the lighter Accessibility Advocacy more in upcoming issues — and wanted side, we are commissioning an original to share the thinking behind our changes monthly cartoon strip by Mat Barton. Local Chapters and additions. Mat has dreamed up a diverse set of New Mobility magazine characters living independent lives on In This Issue wheels — who also occasionally butt Informative and Educational Eat Well: We’ve expanded the concept heads in a slightly dysfunctional SCI/D Publications behind our bimonthly nutrition column to support group. Learn more about Mat include neurological conditions beyond and see his introductory strip in Crip Ongoing Educational Webinars spinal cord injury. Written by certified Buzz. Page 48. nutritional practitioner and para Joanne Membership in United Spinal Smith, the column now includes addition- More for the New Year Association is free and open to al tips; future editions will cover dinner We’ll unveil a few more additions in the all individuals who are living with recipes, as well. Page 10. coming months. Allen Rucker will retire SCI/D, their family members, Reframed: Across the spread from Eat his humor column and pen Media Spin to Well sits an unassuming yet fascinating keep tabs on how today’s image makers friends, and healthcare provid- new column by Reveca Torres, who will are reinforcing or breaking stereotypes ers. Visit unitedspinal.org or call share images and vignettes from her per- about disability. Live Well, by Josie 800/962-9629. sonal journey as a wheelchair user, artist Byzek, will focus on tips for mental and and advocate. We are thrilled to show- physical well-being — from mindfulness United Spinal has over 70 years of case Reveca’s unique point of view every to exercise routines and lots in between. experience educating and empow- other month. Page 11. We have a couple of other ideas under ering individuals with SCI/D to Gear Hacks: You may have noticed a lot development, so stay tuned. achieve and maintain the highest of Seth McBride bylines lately, as he has You’ll see from this lineup that we levels of independence, health and become indispensable in writing about are feeling optimistic about the future. personal fulfillment. We have 50+ products, people and advocacy — so As our new offerings mature over the local chapters and 190+ support indispensable, in fact, that we offered him next several months, tell us how they groups nationwide, connecting a staff position with NM, which he has strike you — what makes your life easier, our members to their peers and accepted. Check him out on the mast- gives you a sense of community or just head under Associate Editor, and visit makes you smile? What is most valuable fostering an expansive grassroots newmobility.com/author/smcbride to and meaningful to you? Let any of us network that enriches lives. see his growing body of work. And what know what you think, or reach out to me is Gear Hacks? Think DIY strategies for directly at [email protected]. increasing independence without break- Happy New Year from all of us at ing the bank. Welcome, Seth. Page 12. New Mobility and United Spinal!

8 NEW MOBILITY HURRICANE RESPONSE

FDA APPROVES EXPANDED E-STIM TRIAL In December, the Food and Drug Administration granted the Christopher and Dana Reeve Foundation approval to move forward with a new set of epidural stimulation trials intended to treat the effects of spinal cord injuries. The project, named “The Big PUERTO RICO HURRICANE RELIEF EVENT A SUCCESS Idea” by the Reeve Foundation and administered by the University of United Spinal staff traveled to Puerto Rico December 16 to deliver med- Louisville, aims to enroll 36 candidates ical supplies and provide equipment repairs in the wake of Hurricane with chronic paralysis through the Maria. The event was part of Assisted Mobility Day and drew wheel- University’s “Victory over Paralysis” chair users from all over the island, including many members of United database. The Reeve Foundation Spinal’s Puerto Rico chapter (pictured). United Spinal’s efforts to assist launched The Big Idea in 2014 and has been soliciting donations to raise the the disability community in Puerto Rico are part of a larger initiative estimated $15 million required to fund made possible through a $500,000 grant awarded to the organization the trials. They are currently at 60 per- by the Craig H. Neilsen Foundation to coordinate and support regional cent of their goal. weather-related disaster relief efforts for the disability community. Epidural stimulation is a process in Three months after the hurricane struck the island, large sections of the which an array of electrodes is implanted island remain without power and access to key resources. Among the on the lower spine and then connected to an electronic stimulation device that goods supplied by United Spinal were inverters that allowed power chair controls activation of the electrodes. users to charge their chairs using car batteries. The beginnings of The Big Idea date Look for a full feature on United Spinal’s hurricane response next month. back to 2009, when Rob Summers, a quad from Oregon, became the first person to participate in an epidural FROM UNITED SPINAL stimulation trial at the University of Louisville. Intense activity-based therapy combined with epistim allowed implantation of the stimulator to func- vice chairman of international develop- Summers to recover some volitional tional gains. ment for the foundation and eldest son motor control below his level of injury, According to the Reeve Foundation, including the ability to stand with the of Christopher Reeve, said the purpose stimulator turned on. An unanticipated “The ultimate goal of this research is of the upcoming study is “to prove this side effect was the recovery of some to demonstrate the efficacy of epidural technology can reverse some of the autonomic (bladder, bowel, sexual, stimulation and lay the groundwork to most devastating complications of spi- and temperature-regulation) func- get this therapy to the clinic.” In addi- nal cord injury.” tion. Three others in the original trial tion, the Foundation hopes to develop For more information on the trial showed similar functional recovery. A new technologies and refine practices and to enroll to be considered for recent trial at the Mayo Clinic repli- with the goal of increasing the effec- this and other research trials at the cated the results of the Louisville trial tiveness of epidural stimulation. University of Louisville, visit victory- with a quicker turnaround time from In a press release, Matthew Reeve, overparalysis.org

JANUARY 2018 9 EAT WELL By Joanne Smith

YOUR HEALTH IN A NUTSHELL Many people may be surprised to learn cantly increase the number that nuts are the hard-shelled fruit of and function of beneficial bac- plants. There are 53 different types of teria, like Lactobacillus, in the gut. In nuts in the world, and every kind has turn these bacteria help support the a multitude of health benefits. I won’t immune system, aid overall digestion describe and go into the details of each and help improve bowel function/ one in this column, but I want to discuss bowel management routines (many three that are extremely beneficial for people with neurological conditions people with neurological conditions experience compromised immune help reduce inflammation. People with and/or mobility impairments. function, as well as chronic digestive disabilities are prone to systemic inflam- Walnuts are a healthy source of and/or bowel dysfunction). mation due to pain, stress, infection, protein, Omega 3 fatty acids and anti- Almonds, in addition to being loaded medication intake and poor diets. Chronic oxidants. Eating these brain-shaped with protein and fiber, are beneficial in inflammation can contribute to increased nuts is associated with reduced risk cholesterol management. A new Penn susceptibility to pain, weakened immune of cardiovascular disease (people with State study published in The Journal of function and tissue damage. Coconut mobility impairments/reduced activity Nutrition revealed that eating this nut as oil has high levels of antioxidants, which levels are at increased risk of developing a snack, versus eating a muffin with the neutralize the free radicals that con- this disease) and improved brain health same amount of calories, reduces “bad” tribute to inflammation, thus ultimately (in some studies, spinal cord injury has LDL cholesterol levels and increases the reducing inflammation. been associated with reduced brain func- levels and function of “good” HDL cho- So, in a nutshell, a simple way to tion). If this weren’t enough to get you lesterol. (Individuals with SCI and others improve and protect your immune, snacking on these earthy-tasting gems, who have difficulty exercising regularly digestive, bowel, neurological and then maybe this next fact will: Research are especially at risk of high LDL and cardiovascular health, as well as boost recently published in The Journal of low HDL levels — which can contribute energy levels, is to eat some nuts every Nutritional Biochemistry reveals that wal- to cardiovascular disease). day. You don’t need a lot — just a golf nuts also contribute to better gut health. Coconuts are officially a fruit — a ball-size of raw, unsalted almonds or Specifically, eating walnuts can signifi- drupe, a fleshy fruit with thin skin and a walnuts will do. Or try this nutty recipe. central stone containing the seed — but Eat two or three of these with a banana can also be considered a nut. Coconut oil for breakfast or enjoy as an afternoon STORING NUTS contains medium chain fatty acids. While energy boosting snack. • Nuts contain healthy oils, many people are hesitant to eat fats, which go rancid easily. Keep rest assured, these fats are good for you. NUTTY TIPS for up to a month at room tem- Unlike other fats, MCFAs are easily uti- • Eat nuts raw. perature, but out of direct sun- lized as an energy source and not read- • Avoid roasted nuts as roasting dries light. Store in an airtight con- ily stored as fat, so for individuals who up their natural healthy fats, and they tainer in the fridge for up to six experience fatigue or gain weight easily, may be cooked in unhealthy hydroge- months and in the freezer for this is the fat for you. Coconut oil is also nated oils. up to a year. a natural antimicrobial and antifungal that • Avoid salted nuts — most people over • Keep nuts away from foods like can help support your immune system. consume salt on a daily basis. Excess salt onions, as they take on the odor. Specifically, the lauric acid in coconut consumption can contribute to edema • Unsalted/whole nuts keep lon- oil is known to fight bacteria, so it can and high blood pressure. ger than salted/chopped ones. assist in fighting infections such as UTIs. • Other exceptional nuts: Pecan, Moreover, this easily digestible oil can Pistachio, Brazil nuts, macadamias

10 NEW MOBILITY REFRAMED by Reveca Torres

NO-BAKE ENERGY BITES

½ cup rolled oats ¼ cup unsweetened coconut flakes 1 large tbsp. coconut oil 1 med jar almond butter ½ cup dark chocolate chips

1. Mix all ingredients in a large bowl. Place in fridge for 10 minutes to allow mixture to slightly harden. 2. Remove from fridge and form mixture into 1-inch balls and place on parch- ment paper 3. Place back in fridge for two hours and then enjoy! THE DAY SOMETHING CHANGED I recommend making and t surprised me that this man, a yoga instructor I had just met 15 minutes ago, with freezing extra energy bites long hair, big muscles and tattoos all over his body, was not frightened by my disabil- to enjoy for weeks to come. ity and was so genuinely interested in working with me. “I’ve never done this before and I think I’m going to learn more from you than you from me…” he said. His hones- Ity made me trust him even though neither of us knew what we were doing and what the outcome would be. We went into the studio and he asked me what would be the best way to get me to the floor. I guided him to wrap one arm around my back and the other under my thighs, as he scooped me up for the first time of many and lowered me to the mat. We began with breathing and basic postures. Inhale, Exhale, Feel, Be Present. I went into that hot room cold and afraid. I came out warm, transformed and addict- ed. My life changed that day. It changed the way I thought about my paralyzed body. It boosted my confidence and reduced my pain. I wasn’t broken and fragile. I felt sexy! Over time I gained balance and strength both physically and emotionally. Although my body is paralyzed, it is still alive and I need to love it, care for it and most importantly understand and listen to it without judgement or comparison to those around me. Funny how this thing I was afraid of trying was exactly what I needed to lead me into happiness and well-being. Reveca Torres, founder of the SCI/D nonprofit BACKBONES, is enthusiastic about cameras and photos. Her bimonthly column uses images to explore how changing your perspective can change your life.

JANUARY 2018 11 GEAR HACKS By Seth McBride Der-

SETTING UP A DIY WORKSPACE

My disability makes even mundane Work Table: Having a sturdy table tasks more complicated than they that you can roll under is key, as it otherwise would be. And I don’t have gives you a stable place to rest your a surplus of money to buy every piece elbows so you can work with both of adaptive equipment that might look hands. You can do some things with a handy. But I like to do things, and I good lap board, but in my experience, suspect many of you can relate. the instability and smaller surface area As a result, the list of gear that make working more difficult than with I’ve designed, made or modified over a roll-under table or desk. Whether my 17 years using a wheelchair is it’s in a garage or inside your home, long and constantly growing: gripping you want the surface to be something gloves, backpacks, under-chair bags, solid that you don’t care about getting sports arm sleeves, a wheelchair car- dinged, cut, or otherwise messed up. rying attachment for a handcycle, a Functional doesn’t have to be expen- quad-friendly handcycle pedal for sive — some heavy-duty shelving my “good” hand, everyday chair side- brackets screwed into wall studs just guards, a portable commode chair above knee height with a 2-foot deep light enough to be pedaled to the far piece of .75-1inch plywood makes for side of the earth, a spray cooling sys- a great workspace. tem for my handcycle, a bar on which Table Vise/Clamps: If you have a I can independently do pull-ups, an garage or a dedicated workspace, do adaptive hammer, a sidecar capable yourself a favor and buy a table vise. of safely carrying my 6-month-old Keeping a piece of equipment secure- baby on a handcycle, and even a ly and firmly in place while you work cross-country sit ski. on it can save a lot of hassle. Lots of Like many who use wheelchairs, I times, working from a chair, it’s hard tinker, modify, design, and get people to get leverage with tools without who know what they’re doing to help using two hands. A table vise can free fabricate all sorts of devices in the you up to really crank on something if name of living the life I want to live. you need to. Similarly, having a variety In this column, I’ll be looking at a of clamps comes in handy to secure different DIY project or “gear hack” what you’re working on, especially if for wheelchair users. How do we you need to come at something from make equipment that we already a funky angle to be able get the right have — or that may already be avail- leverage. able but not necessarily designed for Tools: A mechanic’s tool set is a good someone who uses a chair — more place to start. Wrenches and ratchets functional and fun? in both standard and metric sizing are This month, I’ll cover how to set useful all the time, and if you have up an accessible work space to make limited grip strength, vice grips are your DIY projects a little bit easier. incredibly handy. A tool that is indis- Let’s get started: pensible for DIY projects is a Dremel

12 NEW MOBILITY — a battery powered rotary tool with a variety of attachable heads useful for everything from cutting and drilling to grinding and sanding. They are extremely Happy Der- Helton uses versatile and easy a table vise to to use, even with secure a length limited hand of angle iron for function. New Year cutting with a This is a good grinder. point to empha- from the staff at New Mobility and United Spinal Association size the importance of having and using the brakes on your chair if you’re trying to work on anything. Using two hands, especially if you have limited grip Do you Believe in Magic? strength, is a necessity, and the last thing you want to worry about is your chair wandering away. Bowel & Bladder Basics are our Business! And that adapted hammer? A 5-pound dumbbell with a loop of athletic tape around the outside works great. The Urological Supplements Suppositories tape keeps the dumbbell Cran Magic + ™ The Magic Bullet™ secure (enough) in bladder, kidney & urinary health. safe & sure! Faster acting, A my floppy hand, water soluble suppositories. workspace and the relatively annose agic™ functions best heavy weight for M M maintain a healthy urinary tract- flush Bowel Supplements when you can roll a hammer lets under whatever away E.coli. Magic Cleanse™ me generate a you tinkering promotes fuller movements with. good deal of force with greater ease in a short range of (and less time). motion. You can’t do everything with this setup, but for some- Enzyme Magic™ one on a budget, it makes a great better digestion= better elimi- base to start from. nation. Next column, I’ll be focusing on what to look for and how to modify commercially available backpacks and smaller bags to be functional as a day/travel bag and a removable under-chair bag. Have your own tricks and tips for making bags work well Mention This as a wheeler? We * Ad and Receive The want this column author uses to be interac- 5% OFF his adaptive tive, so send me hammer to seat a your ideas, and tight bearing in a I’ll incorporate caster wheel. www.conceptsinconfidence.com reader input into future columns. 2500 Quantum Lakes Dr. #214 Happy hacking! Boynton Beach, FL 33426 (800) 822-4050 Send questions and ideas to *one time discount per customer [email protected].

JANUARY 2018 13 HOW WE ROLL

OUTDOOR ENTHUSIAST Randy Duchesneau Before he sustained a C5-6 spinal cord injury, Randy Duchesneau was at home on the dance floor. Breakdancing didn’t have the same appeal after SCI, but Randy found a new hobby miles away from the dance hall. Discovering Hiking Seated behind the wheels of his handcycle in the middle of thought finding new hobbies would be easier.” a vacant road in Death Valley, Randy Duchesneau took a It just so happened that one of his breakdancing friends had minute to soak up the beauty around him. “I could look into the also moved on to a new hobby, hiking. Duchesneau tagged along distance and not see a single other person,” he says. “And that’s and liked it. For Duchesneau, hiking often involves more than just something that we quadriplegics don’t get that often, with wheeling through a new locale. While he normally uses a Permobil attendants or somebody near us all the time.” C500, he travels in a manual chair with e-Fix power-assist wheels Hiking and exploring nature were not near the top of to allow him more flexibility for the inevitable obstacles. Duchesneau’s list of hobbies before he was paralyzed in 2006, “I always try to do some trails that aren’t quite accessible but SCI has a way of changing things. just so I can feel like I’m doing something more outdoorsy,” he In the last few years Duchesneau has explored numerous says. “It’s really nice to push the level of what’s accessible and national parks, including Yellowstone, Grand Tetons, Glacier, see if I can go someplace that is more challenging to get to.” Joshua Tree, the Canadian Rockies and much more. “I’ve grown His trip to Joshua Tree with some of his breakdancing friends to love the scenery, the landscapes and the environment,” he provides a perfect example. “I had four people carry my chair says. “Also, the solitude.” and push and lift me up over all these different rocks, trying to Prior to his injury, Duchesneau was a breakdancer at Cornell take me as far up the trail as they possibly could,” he says. “We University. He tried to get back into it when he returned to got 90 percent up the trail, almost to the summit, before we school after his injury, but found that his interest had waned. finally reached an impasse where it was so narrow we couldn’t “Even though I can move my arm around and dance a little bit fit the wheelchair through and the rocks were about 5 or 6 feet now, I was nowhere near as good as I was before,” he says. “I high, so there was no way someone could lift me up over them.

COMPUTER SOLUTION: I use two CAN’T LIVE WITHOUT: I use a Kensington trackball mouses, so I can Permobil C500 most of the time, left click with my left arm and right click but my e-Fix power-assist wheels with my right. It keeps my shoulders in a allow me to travel with a manual better position and pain-free. wheelchair and still get around.

14 NEW MOBILITY ALTER EGO Family Man

Spinal cord injury hasn’t stopped Duchesneau from attaining the family life he wanted. He lives happily with his partner and they had their first child, daughter Maia, two years ago.

Being a parent and a quad has been challenging. I think the most challenging parts were when she was an infant and there wasn’t really much I could do to help. She seemed so helpless. She was unable to

turn herself and I worried about her suffocating. It was

“very nerve wracking watching how helpless she was. I wanted to be able to help a lot more than I could, and I was extremely nervous because I knew that if I needed to help, I couldn’t really do anything. I always had to make sure other people were around. I didn’t feel as “ That’s as far as I got, but it was a very exciting hike.” useful as I would like to have been. But it was just a When not bouldering in his chair, Duchesneau finds phase and since she turned about 18 months old, it has time to explore via handcycle. Just like he chose the e-Fix been really exciting and rewarding. She can walk around wheels to give him more flexibility, Duchesneau settled on a and climb up onto my wheelchair. I can talk to her and Dragonfly as his handcycle of choice because of its ability to she understands what’s going on. It’s a great joy to be attach to his manual chair. around her now and do things together. “I like it mostly because I can transport it and use it where I need to,” he says. “They have a saying: The best camera is the one you have with you. The same thing applies with the handcycle.” Duchesneau has considered writing down all the access info he has learned to share with others. Asked for his top recommendation for accessible outdoors exploration, he chose Rocky Mountain Adaptive, a Canadian charity that promotes accessible opportunities to explore the Canadian Rockies. “They don’t have the ADA in Canada obviously, but thanks to Rocky Mountain Adaptive I probably got to do more in a week while visiting there than I do over the course of a year visiting parks here in the States.”

WHY I JOINED UNTED SPINAL: I helped found the Phila- A MESSAGE FOR ELON: I’m hoping delphia chapter because it seemed like a good opportu- that the people building self-driving nity to meet more people with SCI and share information. cars will keep accessibility in mind so Meeting other quads and finding out how they did things that it can open the world for people was a very valuable part of my progress, so I figured hav- with disabilities who can’t drive. ing a chapter in the Philadelphia area would help others.

JANUARY 2018 15 The Broad Palette of B Y JENNI GOLD Richard Bell

delicious aroma fills the air as on- A ions and peppers sizzle on the grill at Richard Bell’s Los Angeles loft. The loft doubles as Bell’s studio and its walls feature his work. Bell motions for me to follow him, saying, “Let’s talk on the patio and we can watch the sunset.” It’s a warm fall evening, and the beautiful colors of the sunset bounce off the downtown buildings. He continues, “There’s a ton of art downtown and I love it. It’s like a renaissance going on.” Looking around at the convergence of nature and concrete, modern archi- tecture and scrawled graffiti, I can’t help thinking he’s right. Seeing the emotion on his face, I ask him what his greatest passion is. “Food, art, and Formula One,” he says with a grin. As the sun dips behind a building, I compliment him on the enticing smells wafting our way. His blue eyes sparkle as he turns to me. “Art and food go hand in hand. If you want a really good meal, eat at an artist’s house. The food will be delicious, I promise you!”

met his future wife, Ema, who was also Bell to discover his artistic passion. The FINDING HIS WAY pre-med. Despite finding the woman of job required a lot of travel, so to pass Bell grew up in Los Angeles as a ram- his dreams while he was in school, he the time he got in the habit of carrying bunctious kid who was always in trouble. questioned his medical career. “I just “I never gave much thought to what I couldn’t justify the cost of med school. wanted to be when I grew up,” he says. “I I remember being in the cafeteria look- liked to play sports all the time and was ing at classifieds for all these jobs for IT very athletic, but never thought of hav- and the pay was great. I was like, ‘I can ing a sports career.” A future as an artist do that.’” Bell dropped out of school AS A KID I DIDN’T was even farther off his radar. “As a kid I and enrolled in programming courses. REALLY DRAW AT ALL. didn’t really draw at all. I did some doo- “Before I knew it, I was working for I DID SOME DOODLING dling and graffiti with some friends, but Rockwell International at Southern AND GRAFFITI WITH SOME nothing much.” California Edison, then for the U.S. With urging from his parents to be- Government, and after that I went into FRIENDS, BUT NOTHING come a doctor, Bell enrolled pre-med at the private sector,” he says. MUCH. Loma Linda University. While there he Ironically, it was his IT work that led

16 NEW MOBILITY a sketchpad with him and started doing charcoals. As he recollects, “I never considered it as a career though, maybe something to do later in life.” Finally, he summoned the courage to show his drawings to his great-uncle Raymond Howell, a famous artist in Oakland, Cali- fornia. Bell vividly remembers Howell’s reaction. “My uncle said, ‘Oh my! You can paint!’ And I was like, ‘I never paint- ed in my life!’” The realization brought the two even closer together. “We did a lot of talking and painting and eating, and I learned a lot about art and food,” says Bell. “I hoped that maybe I inherited the art Richard Bell's "Reconciled," gene that seems to run in our family.” one of his few abstracts, was inspired by his near- death experience at the A NEW LIFE time of his injury. In 2002 Bell’s career path took one more unexpected turn when he rolled his con- vertible and broke his neck at C5-6. He good start and it was great therapy. I fig- ing to paint what that person might be spent three months on life support. “I ured out that I could do the same kind feeling or going through, so that it’s more had a near death experience and I saw of art I did before and even improve on relatable. I don’t want to paint the tradi- a lot of colors,” he says. The experience it. So, I immersed myself into it. I worked tional portrait look where it is fake and would later inspire one of Bell’s few ab- and worked and worked to better my contrived. I am trying to convey some stract paintings, titled Reconciled, but technique.” kind of experience.” at first his “new life” did not include art. He is always looking for inspiration, Despite Ema managing all of his busi- “After my injury, I didn’t have much use and is committed to improving his tech- ness affairs and setting up his shows (and of my arms. I would try to sketch with nique. He is as likely to draw inspiration being his wife for 22 years), Bell has only charcoal, but I was pretty apathetic about from fellow Los Angeles artists as he is done one painting of her. Ema confesses it,” he recalls. from a trip to the museum to study the that it’s because she can’t sit still and is For Bell, the best part of rehab was the masters. The tools of his trade are var- too self-critical. Bell agrees and points out camaraderie at Rancho Los Amigos Na- ied and constantly changing depending that special Ema painting which hangs in tional Rehabilitation Center. “My main on his inspiration. He started out using their home and is not for sale. passion is connecting with other people, oil, but has expanded his repertoire to Bell also has done a self-portrait titled so I liked talking and hanging out with include acrylics, charcoal, pastels and Rage. In it, his face is distorted in agony. different people. We used to do drag more. “I might use all of them on one When asked what he was so outraged racing in the halls, which was fun. I did painting” he says. “It just depends. I also about he said, “Nothing; I just thought it three months at Rancho and then a whole like to mix all my colors. I have a pallet was a funny face.” We all laugh as Ema new life began.” of seven colors that I use to make almost adds, “Richard is hilarious and can make It was not long before Carlos Bena- any color.” anyone laugh, but what people don’t real- vides, a friend of Bell’s, invited him to an Prior to his injury, Bell trained as a ize is that he’s also very spiritual and ex- art show at Rancho. “I thought, ‘I don’t jazz pianist, an experience that manifests tremely intelligent.” want to see a bunch of disabled people in both the subject and style-blending as- trying to do art.’” he says. “But when I got pects of work. “My art is probably more there, they blew my mind. The art was in- impressionistic, and surrealist a little bit, credible. The show was incredible.” and I dabble in realism,” he explains. “For Benavides encouraged Bell to partici- example, in my music series I’ll have the pate in the show the next year. That set artist as realistic as I can, but then I will him on a path to his future career as a add a ghost image of the musician per- I DON’T WANT TO successful artist, but it did not come eas- forming, so that it’s a bit more abstract PAINT THE TRADITIONAL ily. “I started with small sketches at first, and it gives you more of an idea of what PORTRAIT LOOK WHERE IT and the more I did, the stronger my arms they’re feeling.” IS FAKE AND CONTRIVED. got,” says Bell. “I tried painting and be- Bell primarily paints portraits and I AM TRYING TO CONVEY fore I knew it, I had enough material for wants to illustrate the human experience. the show. Thinking back, I’m not satisfied “A lot of people have asked why I don’t SOME KIND OF EXPERIENCE. with what I did that first year, but it was a paint people smiling. It’s because I’m try-

JANUARY 2018 17 Recently, Bell displayed his work at Art and Chocolate, a show where sweets and paintings are equally admired. “Art is subjective and can mean so many different things to different people that you have to appreciate the work that speaks to you.” In such environments, artists of all kinds are often pushed to new boundaries of their art. “I did a live painting during that show.” He mischievously adds, “And hey, dessert’s a food too!” he lives his life every day. Like many art- This past year, the California Reha- ists, Bell is daring and complicated, but bilitation Institute converted its first floor where those less fearless might hesitate, into a gallery, which will be open to the Bell only picks up speed, letting nothing public next year to showcase the work of slow him down along the way. artists with all sorts of disabilities. Eigh- A Formula One fan to the core, our sen- teen of Bell’s paintings have been chosen sational evening ends as he offers one last to be displayed on rotation, with five of note: “My life’s motto is to keep chugging them on display at all times in the main along. No brakes!” Bell’s trip around the gallery. “It is a tremendous honor,” he racetrack of life has had some tight turns, says of their patronage. Until then, his but thankfully for art lovers he keeps mov- Richard Bell and work can be seen at rbellart.com. ing forward at full speed, successfully his wife, Ema crossing the finish line of the next painting ‘NO BRAKES!’ … and the next adventure. As we wrap up a lovely evening of food and art, Bell tells me about an upcoming 17-day worldwide trip that will take them to Italy, Greece, and Abu Dhabi. This trip is a lifelong dream come true. With a big grin, he explains, “I’ve always wanted ART IS SUBJECTIVE to attend a Formula One race, and Abu AND CAN MEAN SO MANY Dhabi is hosting the last race of the sea- DIFFERENT THINGS TO DIF- son. I can’t wait to be there!” FERENT PEOPLE THAT YOU ON DISPLAY Bell’s passion for enjoying the rich When Bell first heard about the Beverly treasures that life has to offer and his HAVE TO APPRECIATE THE Hills artSHOW, which runs twice a year, drive to live life to the fullest can be seen WORK THAT SPEAKS TO YOU. he wasn’t sure he was ready for such a pres- firsthand in his work, as well as in the way tigious show. “It’s a juried show, so what happens is you have to submit eight pieces and then they have a blind jury review your work and determine if you’re worthy to be in the show.” Bell got in the first time he applied. Since then he’s been selected for two more of their shows. He smiles, “The third time I did that show I actually won a third-place ribbon for best paintings!” Bell is currently working on a commission and getting ready for his next group of paintings that he will enter into the Spring 2018 Beverly Hills artSHOW. As he explains, “Most of the work is done before I touch the canvas. I just start thinking about an entire series and then when I get the time to do it I try to knock it out.” Over the last several years Bell has completed hundreds of paintings, approximately 60 of which are for sale as of A young, pre-SCI Richard Bell discovered an aptitude for painting in his great-uncle Raymond this interview. Howell's studio.

18 NEW MOBILITY The two friends took advantage of changed my life,” he says. “We didn’t put A Passion for the rise of YouTube and the growing anything out that we wouldn’t use or affordability of video production to that we didn’t think was beneficial to our GIVING BACK launch the series in 2012. “We started in community.” Ray’s apartment,” says Bell. “We tried to Bell says the Pushrim video casts may make it look as professional as we could.” be coming to an end, but he is looking to Richard Bell may not have mentioned giving They relied on donations and their own continue with “something similar, but a little back to the SCI community as one of his checkbooks to fund the show. more creative.” In the meantime, the video greatest passions, but his track record of Over the years they’ve put together archives are available on YouTube at youtube. involvement shows it is a vital part of his almost 60 episodes, covering everything com/user/clubpushrim/videos. Find out more life. In 2009, Bell and friend Ray Pizarro, also from medical issues, to technology about Pushrim at pushrim.org. a quadriplegic, created an online forum to to interviews with a multitude of SCI — IAN RUDER

T h e S a f e , P r aconnect c t i c a l and support the Southern California celebrities. “Because of the site, we were a n d C o n ve n i e nSCI t w community. a y t o “Our whole focus was trying privy to a lot of people with interesting t r a ve l wh e r e ve r a n d stories and we used those connections wh e n e ve r yo u wto a n tget . people back into doing things they used to do and being productive in their to try to get those people to come on N o m o r e wo r r i e s a b o u t and tell their stories,” says Bell. Pressed to h a vi n g a c c e s si b l e lives after injury,” says Bell. fa c i l i t i e s. They named their venture Pushrim pick a favorite guest, Bell chose actor and Foundation and started off with a simple musician Tobias Forrest, but laughed as he  Different models towebsite meet where wheelers could share added that his true favorites were “the one  specific needs! their experiences, ask questions and post that were easy to interview.” Simple to assemble;pictures no and videos. In the years since, While Bell and Pizarro set out to  tools required.  Safe and easy to use. the organization has grown to over 2,000 create resources for the community, Bell Seat and footrest heightsmembers, launched programs to support acknowledges the program has had a  are adjustable. the community and gained 501(c)3 status. huge impact on how he lives his life. As Casters have “total-lock”  brakes. One of Pushrim’s most“GO-ANYWHERE” visible ventures has an example, he Chairscited an episode where Lightweight and durable, been its long-running video podcast series, they test drove a Spinergy ZX-1. “I ended high-quality aircraft-grade which Bell cohosts with Pizarro. up getting that one and that has totally Bell cohosts Pushrim podcasts with Ray Pizarro.  aluminum. Compact, convenient, and  PORTABLE! Won’t Rust or corrode;  easy to clean. Virtually maintenance- For Home AND On-The-Road  free. Cushions are available in (3) colors and remove VA contract  easily for cleaning. Optional accessories V797D-30180 include: wheeled custom travel bag, positioning belts, slide-out commode tray, 2-way adjustableThe Safe, Practical and Convenient way to GO-ANYWHERE Chairs headrest, and upgradedtravel wherever and cushions! whenever you want. “When Ya Gotta Go, We Go With Ya!” No more worries about having accessible facilities. “GO-ANYWHERE” Chairs www.goesanywhere.com DifferentFor modelshome to AND meet on-the-road; [email protected] When ya Gotta Go, We 800-359-4021 Go With Ya!” • Safe, Practical, Convenient, specific needs!  Simple to assemble; no Portable tools required.  Safe and easy to use. • Won’t rust, easy to clean.  Seat and footrest heights are adjustable.  Casters have “total-lock” • Simple to brakes. assemble;  Lightweight and durable, Come See high-quality aircraft-grade no tools Our New aluminum.  Compact, convenient, and required. PORTABLE! Ultralight  Won’t Rust or corrode; Different models • Numerous easy to clean. “Sport”  Virtually maintenance- to meet optional free. Model!  Cushions are available in specific needs! accessories (3) colors and remove easily for cleaning.  Optional accessories include: wheeled custom travel bag, positioning www.GoesAnywhere.com | [email protected] | 800-359-4021 belts, slide-out commode tray, 2-way adjustable For home AND on-the-road; When ya Gotta Go, We Go With Ya!” headrest, and upgraded JANUARY 2018 19 cushions! www.goesanywhere.com [email protected] 800-359-4021

Custom wheeled travel case “For home AND on-the-road; When ya Gotta Go, It'll Go With Ya!" available. LEANING INTO THE BY BOB VOGEL

OGOn a 2016 video, a man seated on a cool-looking modified Seg- way called an Ogo wowed viewers with a slick demo of the device’s hands-free driving capabilities. By simply leaning in the direction he wanted to go, the rider effortlessly navigated Ilong stretches of beach, wilderness trails and urban environments, all at high speeds. The video quickly went viral, and created a lot of buzz among wheelers. Two years later, the Ogo is finally coming to market. Ogo is the brainchild of New Zealand design engineer Kevin Halsall. The idea grew out of his friendship with Marcus Thomp- son, the T12 para riding the Ogo in the viral video. Sharing a mu- tual passion for archery, the friends participate at a club that has shooting stations on bush trails, wooded areas and open grass- land, making it tough to navigate with a manual chair. Halsall decided to design a device that would enable Thompson to easily traverse the area. Halsall started the quest with a Segway platform, which sells for $6,000, instead of a less expensive platform. “It is the only one that has redundant sensors in areas critical for safety,” says Halsall. “And this makes it the most reli- “The Ogo looked so agile and able platform on the market.” Although seated Segways fluid, going where you want have been around for over 10 Gretchen Ryan takes a demo by simply leaning ... it was drive with inventor Kevin years, Halsall felt he could Halsall. come up with a superior design beautiful.” compared to the ones currently on the market. Thompson, who has an engineering background, worked as the test pilot. Their main focus was to improve the way seated riders control the device, starting with the handlebar. “We felt the center- mounted control bar was invasive for the rider. And we felt the bolt-on seating system and fixed backrest found on many seated Segways prevented leaning back far enough to enable fast braking, which is dangerous,” says Halsall. This led him to invent Ogo’s key feature — a pivoting seat that controls the Segway via custom electronics called the Dynamic Seat Control. He even created a functional and cool-looking shape to incorporate it. Three years of development went into honing a solid prototype. In 2015 they posted an introductory YouTube video that quickly gained over 1.5 million views. They continued with refinements,

Photos by Roberto Amado-Cattaneo Roberto by Photos and in 2016 posted the Indiegogo crowdfunding video featuring

20 NEW MOBILITY Thompson. The crowdfunding goal fell short, but they where from five minutes to an hour to get comfortable,” were able to complete the project with sweat equity, sheer says Stuart Ayres, Ogo’s business director. will, and support from New Zealand and international communities. “We developed a product with elegance, HOW IT ALL performance, and just a bit of cool,” says Thompson. WORKS TOGETHER COOL, WITH A At 143 pounds, 25.2 inches wide (32.7 inches with off- road tires) and 24 inches high with the backrest down, LEARNING CURVE the Ogo can be transported in vehicles as small as a That cool factor has lured in many users, including hatchback car by pushing or driving it (without a Gretchen Ryan, an L1 para. “I saw the Ogo video and it rider) up a set of generic collaps- looked awesome,” says Ryan, 42. “What really grabbed ible tunnel ramps. With two me was watching the rider travel across the beach lithium ion batteries, travel hands-free. It looked so agile and fluid, going where you range on a full charge is want by simply leaning … it was beautiful.” She was so up to 24.8 miles. It can stoked by the video that she placed an order, and be- climb impressive in- came an Ogo agent. clines of 20-25 de- Ryan got to demo grees and descend the Ogo for two days at inclines of 30 “An Ogo is like a motor- various places, starting degrees. It cycle or a quadrunner in a grassy backyard. comes “It’s challenging, there — it’s fast and powerful.” is a learning curve to keeping yourself centered. If you lean forward, back or to one side the Ogo is going that way — unless you lower the feet [landing gear],” says Ryan. “I felt like a toddler learning to walk. At first it was turning and twisting under me. I had to re-learn to use all of my core muscles to stay centered without using the handles.” After a while she dialed in, and that evening drove it in a Fry’s Electronics store. “I was cruising up and down the aisles and one of the things I noticed is the kids that saw me just lit up and said, ‘Wow! I want one “The Ogo looked so agile and of those!’ I can see how this will be cool for everything from pushing a grocery fluid, going where you want cart to holding a child in my lap. Plus, it is going to help me protect by simply leaning ... it was my shoulders.” beautiful.” While it might help save users’ shoulders, the people behind Ogo emphasize that the Ogo is a personal mobility device, not a medical device. Don’t expect your insurance to cover it and don’t as- sume you can’t hurt yourself. “An Ogo is like a motorcycle or quadrunner — it’s fast and powerful,” says Thompson. The Ogo website suggests wearing a safety helmet and other protection deemed appropriate when using it, and allowing at least an hour of learning in an open space before driving it in public areas. “Learning to operate an Ogo is like learning a Segway or riding a bicycle. There is a learning curve that takes any- Photo by Roberto Amado-Cattaneo

JANUARY 2018 21 with a gel cushion, but users can switch to their wheelchair Kenza Kadmiry gets instructions from Ogo cushions for added protection. inventor Kevin Halsall. The Ogo relies on four self-leveling feet to provide the stability wheelchair users need to transfer safely. A push of a remote-control button on a key FOB puts the Ogo into balance/drive mode and raises the feet, which are deployed in the “off” and “stand-by” modes. In balance/drive mode, the Ogo stays stationary with a straight-up “neutral” sitting position, and moves in the direction you lean — forward to go and speed up, side to side for steering and leaning back to slow, stop, or back-up depending on angle and length of backward input. A direct lean to the side will produce a turn-in-place. The Ogo has grab handles located on top of each fender to enable people with limited or no trunk support to con- $4 MILLION TO IMPROVE trol their body-lean-input with their arms. The grab handles MOBILITY PRODUCTS also enable quick aggressive movements for advanced riding. Riders have the option to switch to joystick control — it The high cost of bringing a product like Ogo to market is some- can be mounted on either side — which controls steering in thing that stops many promising mobility ideas in their tracks. tight areas or for people that have difficulty controlling lean- To offset those costs, Toyota Mobility Foundation announced the ing. Switching from lean steer to joystick control is done by Mobility Unlimited Challenge, a $4 million prize designed to spur flipping a lever on the rear fender. It has two performance innovation that will improve mobility for people with lower-limb modes, “turtle,” for learning, provides forgiving input re- paralysis. The challenge was launched November 16 at a press sponse and a max speed of 6 mph, and regular mode with a conference in Los Angeles. For the contest, Toyota has partnered top speed of 12 mph. with Nesta’s Challenge Prize Center, a U.K.-based foundation. “When you are moving, Ogo compensates your seating — The challenge runs for three years and has several award levels. Ten keeps you centered without pulling you forward or back. It awards of $50,000 will go to groups that come up with promising con- leans back when you go down a hill, slow down or stop at full cepts. Five finalists will each receive $500,000 to further their design. speed, just like your body does when you are walking or run- The winner will receive $1 million for the prototype that best meets ning,” says Thompson. He emphasizes that riders need to have the challenge statement: “create game-changing technology that will enough arm control and strength to stay upright. “If you do help radically improve the mobility and independence of people with flop onto your knees and can’t get upright and lean back, you paralysis.” The winners will be announced in Tokyo in 2020. will accelerate to full speed and won’t stop — in essence your The challenge aims to attract innovators from all over the globe, body balance is the stop button.” including people who wouldn’t otherwise have the resources to “We have had over 300 people demo the Ogo in the past break into the assistive technology market. One of the many exciting few years and have had people with injuries as high as C5-6 aspects to the challenge is the absence of restrictive parameters, and that are able to drive it, though not as aggressively as some- the acknowledgement that mobility improvements mean different body with a lower level injury,” says Thompson. “It is fun to things to different people. Winning entries could be anything from see people learning how to work it. And when they do, they exoskeletons to artificial intelligence to radical improvements in bat- get this ear-to-ear grin — we call it the Ogo grin — and they teries. “I think of this as a challenge in universal design,” said Deborah are hooked.” McFadden. She is one of the ambassadors for the challenge, served All it took to hook Kenza Kadmiry, a C5-6 quad, was a as U.S. Commissioner of Disabilities from 1989 to 1993, and is also the mother of Paralympian Tatyana McFadden. “A successful outcome for me will be finding those creative people that think outside of the box. More importantly, [the winner] should be something that is available and affordable to people in developing countries, because bringing mobility to people in the entire world is important.” “We look for particular areas where perhaps there isn’t enough Travis King leans innovation happening,” said Tris Dyson, director of Nesta’s Center back and to the For Challenge Prizes. “We are in the midst of a fourth industrial rev- side to slow and olution, and there is so much happening in artificial intelligence, turn the Ogo. robotics, etc., so let’s focus this on the challenge of mobility. This is an opportunity for unknown entrepreneurs to bring up new and novel ideas and get funding to develop game changing ideas.” • Toyota Mobility Foundation, Mobility Unlimited Challenge, mobilityunlimited.org

22 NEW MOBILITY SEATED SEGWAY OPTIONS ndrew Hippert is the founder and Going, made in Italy. “I like the Going because Aowner of Living Spinal, one of the it has a spring-loaded backrest that enables leading U.S. distributors for seated Segway extra backward movement for slowing and modifications. He currently sells nine ver- stopping,” he says. “It also has several safety sions, including Ogo, and is an enthusiastic features, including a steering arm that locks advocate and regular user. “Seated Segways in place when the machine is on so it can’t are more fun than anything you will ride. accidentally pull out when moving, and a two- They will get you into an adventure zone, stage footing system that first lifts an inch and on trails, cruising on a sandy beach or en- reminds the rider to make sure the machine is able working on a farm,” he says. turned on before lifting the rest of the way. On Hippert, a C6-7 quad, sells the promise of other seated Segways, except the Ogo, if you adventure, but not without caution. “They forget to power up the device before lifting up are a mobility device, not an FDA approved the feet, you will fall over.“ The Going retails for This is Andrew Hippert’s favorite normal power chair — they’re more like $14,498 with Segway base, or $8,499 for the seated Segway, the Going. Hippert a bad-ass hoverboard. They have tons of is the founder and owner of Living seating system. power, speed and maneuverability, which Spinal, a U.S. dealer for seated “I drove the Ogo and I think it’s awesome,” is a lot of fun, but has the capability to buck Segways, including the Ogo. says Hippert. On the other hand, he finds you off if you push it hard, or hit a bump that the center-mounted steering handle, complete with Segway base, or $3,648 for or curb at any speed,” he says. “It’s got two which is removable for transfers and found just the seating system. wheels, so ride with caution.” on most seated Segways, makes riding Another popular model is the AddSeat, He estimates there are between 800 and made in Sweden, which has a steering handle 1,200 seated Segways in the U.S., many of easier for people with higher-level injuries and features a seat that glides forward and which he has sold. Although there are less because it provides a lever to push and pull back, providing easier and more intuitive con- expensive self-balancing power bases on on for the forward and backward motion trol input. It retails for $13,998 with Segway the market, Hippert prefers the Segway base needed for control input. “I’ve had some base, or $7,999 for the seating system. because of its built-in redundant safety fea- higher-level quads with super-limited arm tures, superior speed (12 mph) and distance movement be able to ride seated Segways, (24.8 miles range on a charge). He explains and the steering handle becomes important RESOURCES that models vary in driving and safety fea- for them for balance,” he says. • Ogo Technology, ogotechnology.com. tures as well as price, and his company’s goal Hippert’s best-selling seated Segway to Ogo’s videos are available on its site under is to help match a customer’s ability and date is the Blumil, made in Barcelona, Spain. the “video” tab. pocketbook to the best machine for them. It has a static, rigid-seat frame, and is also the • Living Spinal, 619/810-0010; livingspinal. Hippert’s seated Segway of choice is the least expensive model, coming in at $9,649, com/power-assists/seated-segways/

demo. Kadmiry, 26, normally pushes a manual chair and has a person calls your name you just lean that way and you turn to good arm function, but limited hand function. “It is surpris- face them, rather than having to grab your push rims, or move ingly easy to drive,” she says. “It is sensitive to minimal move- a joystick to turn to see the person.” ments, and I found I could stay centered, King sums up what many people who balanced in one place, without hanging have seen and/or tried the Ogo are saying. onto the handles. I liked it — it is on my “I’m really into it! I just need to figure out wish list for sure. When I got back in my “It’s fun to see people learning how to raise the money.” manual chair it felt heavy, like gravity how to work it. And when they The initial run of 60 Ogos have been was pulling me down.” purchased — most are headed to cus- “It’s the closest thing to walking that do, they get this ear-to-ear grin tomers in the U.S. — and are set for de- I’ve experienced in my 20 years as a T10 — we call it the Ogo grin — livery in late January 2018. Retail price is para,” says Travis King, 50. “I got it go- $16,996 plus $350 for off-road tires, plus ing as fast as it would go and then threw and they are hooked.” freight from New Zealand at an esti- myself backward and it came to a com- mated cost of $150. For demos, sales and plete stop within 15 feet. It’s also really support, Ogo has set up an expanding good in tight areas. I can see where it would be great for practi- network of Ogo agents and dealers who have purchased an Ogo. cal things like carrying grocery bags into the house or mowing In the U.S. this network is through Living Spinal, and contact the lawn. Also, you feel more that you are part of the crowd. If info is listed on the Ogo website.

JANUARY 2018 23 2017 PEOPLE OF THE YEAR: Yannick Benjamin & Alex Elegudin

BY SETH MCBRIDE

Alex Elegudin and Yannick Benjamin launched Wheeling Forward in 2011, eight years after sharing a room in rehab at New York City’s Mount Sinai Hospital. Since then, the nonprofit has grown into an invaluable resource for the thousands of New Yorkers with SCI. It has provided over 350 wheelchairs, transitioned approximately 75 people out of nursing homes, given away college scholarships, helped people find their first post-injury jobs, hosted dozens of adaptive sporting events around the city, and organized urban outings to cultural and sporting events. In recognition of their contribu- tions to the disability community through Wheeling Forward, we are proud to honor Elegudin and Benjamin as our 2017 New Mobility People of the Year.

n an unremarkable brick building just within the large, fluorescent-lit space. On a few blocks from Central Park, two the street-side of the room, another train- Iyoung women prepare for a boxing les- er leads a small group of wheelchair users son. They’ve come as they are, in street in a modified spin class. They alternate clothes and power chairs, with no spe- arm ergometer intervals with lightweight cial gear except the padded gloves their dumbbell exercises, and are wearing trainer slips onto their uncooperative themselves out rather quickly. To their hands. Neither has a ton of upper body left, two guys bullshit and laugh as they function, but both are ready to exhaust grab steaming plates of rice and chicken everything they do have. for dinner. Across the room, a man lies “Right, left, right, body, body,” the on an elevated mat as a trainer manipu- trainer yells out over a din of bass-heavy lates his legs and hips, slowly lengthening music and the voices of the 40 or so muscles and tendons tight from daily sit- people that currently fill the main room ting. Next to him, a guy and a girl look of the East Harlem location of the Axis down on the room from a pair of stand- Project. One lady shadow boxes while the ing frames, while in front of them a man other throws shots — hooks, jabs, and in a power chair and his caregiver get him uppercuts — then bobs down, bending set up to do some single arm pull downs side to side as her trainer passes the mitts on a cable machine. There’s so much go- over her head in swooping arcs. ing on in here that it can take a while to This ever-evolving, sometimes halting process it all, but for all the activity, this is dance is but one small scene of activity just the tip of the iceberg.

24 NEW MOBILITY Photo by Anabella Veress JANUARY 2018 25 The Axis Project is just one of the of Mount Sinai Hospital, on Manhat- many programs of Wheeling For- tan’s Upper East Side. Elegudin had ward, a New York City nonprofit C6 quadriplegia the result of a car ac- founded by our 2017 People of the cident. Benjamin had T6 paraplegia, Year, Alex Elegudin and Yannick also the result of a car accident. Ben- Benjamin. Like the broader orga- jamin was a sommelier, who, at 25, nization and its founders, the Axis had already been working at some of Project can be hard to sum up be- the finest restaurants in New York. cause it kind of does everything. Elegudin was a sophomore at Carn- It is a fitness center for people with egie Mellon University in Pittsburgh disabilities that offers activities from studying biomedical engineering. spin classes to yoga, Pilates, box- They bonded quickly since they were ing lessons, spinal mobility classes both young people from immigrant and weight lifting. It also offers acu- families — Elegudin moved from puncture and massage services. The Russia when he was 4, and Benja- posted schedule features art therapy min’s parents both immigrated from on Friday and a wheelchair cleaning France just before he was born. and maintenance service on Monday. “It’s a relationship that grew, it The center offers a regular “Cooking wasn’t like we [immediately] became for Quads” class and a recent outing the Matt Damon and Ben Affleck had lead physical therapist Lawrence of the non-profit world,” Benjamin Harding helping members learn to says. “I think most of all we had the navigate the byzantine and only in- same background. Both from im- termittently accessible NYC subway migrant backgrounds, both growing Everything Wheeling Forward does is driven by a mission as simple as it is comprehensive: helping people with disabilities in New York City to live as they so choose.

system. Through all of this, the proj- up in New York. I think we’re both ect ends up serving as a de facto social extremely loyal people, the cultural club for its members. background was very similar, I think Being a member of the Axis Proj- maybe the passion, the drive, the want ect, along with everything that entails, to be better, on an individual basis, but is covered by New York’s Medicaid. also to see other people grow and be If you don’t have insurance, they’ll better, is something we share.” work with you, and probably figure Coming out of rehab, both Elegu- out how to get you covered in the pro- din and Benjamin set themselves to cess. Adaptive fitness and providing reframe the lives they’d been con- assistance to climb the bureaucratic structing prior to their injuries. Prac- hurdles necessary to obtain needed tical by nature, Elegudin shifted his services might seem like two very focus from biomedical engineering different things, and they are. But to law. “I understood that manual la- they’re both well within the purview bor was going to be tough now, but I of Wheeling Forward. Everything it could still speak pretty well, and had does is driven by a mission as simple won a lot of arguments with friends, as it is comprehensive: helping people and girlfriends,” he says with a smile. with disabilities in New York City to He attended law school at Hofstra live as they so choose. University and found work as a practicing attorney. Support Makes Benjamin’s goal remained the same. He loved working on the res- Elegudin leads a support group, and Benjamin the Difference taurant floor as a sommelier, and leads a spin class, while other members of Axis he didn’t want to give that up just box, lift weights, use standing frames Elegudin and Benjamin first met in or take cooking classes. 2003 as roommates in the rehab unit because he had to use a wheelchair.

26 NEW MOBILITY After seeing a picture of a waitress using a lap tray to serve food from her wheelchair, he designed a custom tray that allowed him to hold wine glasses, bottle, and decanter while wheeling — a must to continue working as a sommelier. He was hired as a sommelier at Le Du’s, a wine shop that is now recognized as New York City’s best. Both Elegudin and Benjamin realized that their personal stories were too often the exception and not the rule for people with disabilities. They were young, smart, motivated, George Gallego, right, served as a key mentor for Elegudin and Benjamin. Known for his hard-working and resilient, all of work in getting people out of nursing homes, Gallego is also a partner in the Axis Project. which are extremely helpful when trying to rebuild a life after paralysis. For those who have a physical Figuring it Out But neither will point to those quali- disability, the obstacles to success In 2010, Elegudin was mentoring a ties, or any other personal attribute, can be pervasive. Accessible hous- young man in a nursing home whose as reasons they’ve been able to suc- ing requires money. Work requires insurance wouldn’t buy him a power ceed. Instead, they cite their support education and training. Education chair, a situation that is all too com- systems — family, friends, and men- requires money, or the know-how monplace. If the man was going to tors — as the key factor in why they to obtain aid. Just getting around transition out of the nursing home have been able to navigate a world and living with independence re- into independent housing, he would not set up for those with disabilities. quires the proper medical equip- need a wheelchair. So, Elegudin got Perhaps their most important ment, which requires money, insur- on eBay, found a used wheelchair mentor was George Gallego, a leader ance, and often both. Staying active and drove to Delaware to get it. in the New York City SCI community requires equipment and know-how. It was a simple thing — getting a and the founder of Wheels of Prog- If you don’t have a support system, wheelchair for someone who needed ress, a nonprofit focused on creating figuring all these things out on your it — that made a big difference in that accessible housing solutions. Gallego man’s life. But when Elegudin ap- provided both an example of some- own can be next to impossible. Elegudin and Benjamin had ev- proached established nonprofits about one who’d been able to build a life af- doing this, they balked. Too much lia- erything going for them, and still it ter paralysis, and a wealth of practical bility. Sorry, not something we can do. was incredibly tough. They wanted knowledge on how to do so. The three Elegudin says, “The thing that to build a support system for all would become close friends, and took me a while to realize about eventual partners in the Axis Project. those who weren’t so lucky. advocacy is that you don’t need any special training to start helping people.” There’s no playbook for most of the stuff they do. Rather, “advocacy is about screaming loud enough for people to hear.” Around this time, Benjamin tried to put together a fundraiser to benefit a program that Elegudin was involved with. It was envisioned as a way of connecting New York’s wine community to its disability community, but the idea quickly fell apart because of planning disagreements, and Benjamin was soured by the experience. “I wanted to be able to support organizations I believed in,” he says. But he didn’t know anyone doing the kind of things he wanted to support. Elegudin represents Axis and Wheeling Forward at the 2015 Disability Pride Parade. Except Elegudin.

JANUARY 2018 27 In 2011, Elegudin and Benjamin started their own organization, Wheel- ing Forward. They had no long-term plan. No list of action items, or detailed agenda. What they did have was a desire to aggressively help people and a weari- ness of hearing no. “What do you mean, no?” Benjamin asks. “Don’t tell someone no, just because you don’t know how to do something. Figure it out!” Benjamin and Elegudin held their first fundraiser for Wheeling Forward in 2012 and immediately churned that money into their wheelchair giving and scholarship programs. Then they partnered with Gallego in 2014 to start the Axis Project. Together, they’ve expanded from a cramped corner of a single room to two large spaces — the East Harlem location, and a brand-new gym space in Brooklyn, all while expanding the rest of Wheeling Forward’s Axis Project has become a de facto social club, and Halloween is often a Wheeling Forward’s litany of advocacy, highlight for members like José Hernadez, left, and Arianny Ramirez, center. support, giving, and recreation efforts. A large part of their success is a clear delineation of Elegudin and Benjamin’s roles. “Our end game is the same, but how we go about it is different,” Benja- New Mobilityt OCT 2014 6000TRS_mm_346.qxd 9/26/2014 9:44 AM Page 1 min says. “He’s all about the program-

DON’T REMODEL YOUR MULTICHAIR Slider Systems BATHROOM, “NUPRODX IT!” MULTICHAIR 6000RS ALL NEW! Is the threshold of your stall shower preventing you from rolling in? Is access limited by a narrow shower door? With the new MULTICHAIR 6000RS, you’ll be able to get into your existing stall shower without spend- ing $1,000s on bathroom remodeling costs. Nuprodx’ exclusive compact modular design allows the system to fit showers of nearly any size. Log on to www.nuprodx.com to see the entire range of shower and commode systems that will improve the quality of life for users and caregivers alike. Nuprodx, the one system that can last a lifetime. Proudly made in the USA!

Features Include: • Eliminates bathroom transfers and is an effective alternative when installing a roll-in shower isn’t possible or affordable • Under 22” wide with a rotating base, it easily gets into small, hard-to-access bathrooms and showers • Available with Tilt-in-Space seating • Fold-back padded locking arm rests and adjustable swing- away/removeable footrests ease transfers and improve comfort • 5" casters with Total-Lock brakes prevent swiveling and rolling • High-quality soft and comfortable padded seat and back cushions • Seat height adjusts over the highest toilets required by the ADA • Removable locking bridge section available in optional lengths • Won't rust or corrode: Aluminum, brass, stainless steel and plastic construction—it’s going to last! Tub, Toilet and Shower Access Systems Visit our web site for complete information about our products. www.nuprodx.com (855) 220-5171 “light, strong, and portable”

28 NEW MOBILITY “Don’t tell someone no, just “The thing that took me because you don’t know how to do a while to realize about something. Figure it out!” says advocacy is that you don’t Benjamin. need any special training to start helping people.” – Alex Elegudin ming aspects of it, he likes to be the gen- who does so much — who co-founded eral when it comes to that, and I’m more The Money Man and serves as Wheeling Forward’s fund- about getting the word out there, build- raising and marketing head, while being ing relationships, networking, raising the and The Mayor recognized as one of the best sommeliers money, and all that kind of stuff.” Benjamin is a man with an ingrained in the country. In fact, who is the first Both are exceedingly talented at what sense of service, and a pervasive guilt and only sommelier to use a wheelchair. they do, and neither feels the need to that he is not doing enough, or perhaps Or who will teach spin classes at the Axis intrude on the other’s work, something more accurately, that he could be doing Project, serve as its motivator in chief, Benjamin puts down to their long rela- more. “I’m selfish with my time,” he says. and cajole members into making signs tionship. “I think there’s this lack of in- Yet when pushed, will admit to regularly for and attending protests and advocacy security with each other — there’s never putting in 10-12 hour days between his events across the city. like ‘why did you do that without me, or night job at the University Club and his Benjamin is passionate about many why didn’t you let me know.’ Really, none work with Wheeling Forward. At first, things, yet reflecting on his accomplish- of that happens.” this seems an odd attitude for someone ments is not one of them. But when the

With the Action Trackchair® Life’s an adventure, sidewalks are optional

18 custom colors and two track tread styles to choose from, all at no additional cost

Over 20 Customized Options No sidewalks Sold and serviced at your favorite throughout all 50 states destination? No problem, the Action Delivery with personalized Trackchair® loves the instruction on the proper challenge of sand, rocks, operation snow, water and mud. With our expansive To find a dealer near you visit Action Trackchair® dealers product line-up, Action www.actiontrackchair.com are available to serve your Trackchair® gives you the needs beyond the sale utmost in selection and Or call 507-532-5940 versatility.

JANUARY 2018 29 operation has fueled Wheeling Forward’s rapid expansion. At the Axis Project Elegudin acts a bit like a small-town mayor. He knows everyone and everyone knows him. There are always a thousand things to be attended to — whether it’s discussing building operations with the other ten- ants of the space, programming needs with staff, or employment opportunities with members — and there is never a better time than the present. The political metaphor only goes so far though, as Elegudin isn’t fond of sugar coating things to keep people happy and With the full support of New York’s wine community behind them, Benjamin and he’s far more talented than most politicians Elegudin raised $300,000 for Wheeling Forward this year. at actually getting things done. He’s the archetypal New Yorker in these respects: He tells it like it is, and if the truth is un- pleasant, deal with it; and it’s quite possible Wine on Wheels that he may never sleep. “I’ve always been a Fundraising events for Wheeling Forward are spread throughout the year, man in a rush,” says Elegudin. including many that are connected to the wine world. Its signature event, His day job is with the New York Taxi “Wine on Wheels,” started as a single afternoon wine auction and tasting and Limousine Commission, where he that has transformed into a major event for New York’s wine community. is the accessibility program manager, It now features a week of tastings spread across the city leading up to the tasked with increasing the accessibility big event, in which New York City’s top sommeliers, restaurants, and wine of New York’s enormous Taxi fleet. He importers converge with Wheeling Forward to offer some of the best wine also works what amounts to at least a and spirits the world has to offer. It’s high profile enough that Forbes.com full-time job managing the operations of led off a 2015 article with this: “It’s May again — which, for New York’s wine Wheeling Forward, while being regularly community, means only one thing: Wine on Wheels.” involved with other disability-advocacy That level of mainstream attention helped Wine on Wheels bring in work whenever and wherever it pops up. $125,000 for the organization last year. A full year’s worth of wine events It’s a hectic life, but one that Elegudin bought in $300,000 for Wheeling Forward in 2017. The relationship with the consciously chose after he started work- wine world has been so successful that Benjamin hopes to expand Wine on ing as a lawyer. “I worked at a few firms, Wheels to other cities, allowing nonprofits to engage the support of their lo- but after a while I realized there were cal wine communities. Plans are currently in the works for a Houston event. thousands of other attorneys in New York City who could do the legal work I was doing, he says. “That wasn’t the case subject turns to any number of issues I could make a scene,” he says. with disability advocacy.” affecting the disability community, his This is clearly a man who understands Elegudin and Benjamin believe in hands chop the air as his voice rises and the proper ingredients for, and power of, the power of coalitions, so Wheeling falls in well-reasoned, expletive-punc- a good news story. Unfortunately, he was Forward partners with United Spinal’s tuated sentences. Take the New York allowed to push unmolested, and finished NYC Chapter, George Gallego’s Wheels City Marathon’s policy to restrict push the race in his everyday chair. of Progress, which focuses on accessible wheelchair entrants to racing chairs, Another thing Benjamin is passion- housing issues, and Independence Care which Benjamin found out about when ate about is raising money. “‘No money, Systems, a nonprofit that helps coordi- he signed up to do the race this year as no programs’ is something I tell Alex all nate in-home care services, among oth- part of a fundraiser for Wheeling For- the time,” he says. He clearly has a gift ers. Depending on what they’re trying ward. “It’s hard enough for someone in for fundraising, often securing in a sin- to get done for a given client, Wheeling a wheelchair to be able to train to push gle event the kind of money that many Forward is willing to collaborate with a marathon,” he argues. “Now you’re go- nonprofits would be thrilled to raise in a anyone who does good work. ing to tell them they’re required to have a year [see “Wine on Wheels” sidebar]. The As a board member for United Spi- piece of equipment that costs thousands funds Benjamin brings in, along with the nal Association’s New York City chapter, of dollars just to do it? That’s not fucking exceptional work ethic and attention to Debra Poli knows she can rely on Elegu- inclusive.” Benjamin pushed the mara- detail that Elegudin brings to the run- din and Benjamin. “Frequently we [the thon in his everyday chair. “I was dream- ning of their programs, and the passion NYC Chapter] have requests for help that ing that some official would stop me and that both of them infuse into the whole we’re not equipped to handle,” she says.

30 NEW MOBILITY “But if I send Alex and Yannick an email that ‘this and this is happening, can you do anything?’ they’re on it in a minute.” Some of that stems from Benjamin’s hospitality background. “Hospitality doesn’t only apply in a restaurant. It’s a 24 hours a day, seven days a week thing,” Benjamin says. “I hope that each member [of the organization] is treated with the best hospitality possible. Our job isn’t to say no, it’s to provide solutions.” “They’re very kind, likeable guys. There’s nothing that they wouldn’t do for other people,” says Poli. “They have big hearts, and that comes through with everything they do. So when they put out a request for help, or they say, ‘gee, this is The outings led by Wheeling Forward translate into true community integration — and a lot of fun. something we need to work on together,’ people rally around them. They’re really, tion he had when he was working in the Wheeling Forward attracts as employees, truly, leaders in the community.” hospital — what happens to people when volunteers and members. There’s Manny, they leave rehab? “Community integra- a former investment banker who sus- Talent Attracts Talent tion was a big buzz word in the rehab tained a C6 spinal cord injury, and now Lawrence Harding was Elegudin and world,” he says. “But here, they’re actually manages operations at the Axis Project. Benjamin’s physical therapist at Mount providing it.” There’s José, the boxing trainer, who also Sinai, before joining them to work at the A therapist, professor and dancer, just inked his first book deal — an edu- Axis Project. He says they helped provide Harding is but one example of the kind cational text about immigration for sixth him the answer to a fundamental ques- of motivated, multi-talented people that graders. There’s Arianny, who started as a

JANUARY 2018 31 member of the Axis Project and grew so Fostering Community and sign-making for a healthcare protest involved that they brought her on as staff at Trump Tower have all wound down. On any given night, the Axis Project is at Wheeling Forward. The total paid staff Elegudin, just back from a side trip across illustrative of what is found when those now numbers 15, about half of whom use town to speak at a disability symposium, with disabilities are viewed as individu- wheelchairs. Over the course of the year, is in a back room meeting with Manny als with talents, wants, and goals, rather between regular programs, special events about next week’s activities. Benjamin than as patients in need of a cure, or and Lawrence sit at one edge of the room, and fundraising activities they’ll utilize numbers in a system. Here, says Poli, beverages in hand, listening as a Karaoke over 400 volunteers. “No one’s giving them the poor little pa- session winds down the day. Eli, a natural The addition of so many dedicated, tient routine. They’re treated like grown- linguist with a surprisingly velvety voice, talented staff members has allowed ups who are expected to have goals and croons “Le Café des Trois Colombes” in Wheeling Forward to dramatically ex- they’re encouraged to be well, to take care impeccable French. “On n’avait rien, mais pand the scope and quality of the services of themselves, to work out, to get active, on avait toute la vie …” — We had noth- that they provide. If anyone gets exhaust- to be involved in the community.” ing, but we had our whole life. ed with the pace and the sheer amount of At 9 p.m. on a Friday in November, Stephan, an engineering student, work that’s required to make Wheeling the Axis Project has been buzzing with whom Wheeling Forward has helped Forward run, they don’t show it. activity for hours. The classes, workouts with scholarships and assistance in find- David Simond’s Story f there was a genesis point for everything that Wheeling The transition from rehab to a nursing home can break IForward does, it was in what Alex Elegudin calls, “one of people. “You go from a place where everybody is working to the most unjust places in New York City.” Goldwater Memo- get better to one where everybody is dying,” Elegudin says. rial Hospital was a chronic care facility for those with physi- Elegudin started going to visit because Simond had no cal disabilities, one of New York’s “last remaining stains of one else. Elegudin wanted to do something to help him mass institutionalization,” as Elegudin puts it. It was built but had no idea what. He’d only recently left rehab and on Roosevelt Island, separated from Manhattan by a nar- was still trying to figure out his way about his new world. row stretch of the East River, constructed on the remains of So he’d just go there and watch TV with Simond, give him a prison, near the now-shuttered doors of what was once some company, somebody who thought of him as a person known as the New York City Lunatic Asylum. instead of a number. Then one day, he went and Simond In 2003, as Elegudin worked through the rehab unit of wasn’t in his room. Mount Sinai hospital, Goldwater was still operating. Once The staff told him that Simond had died, possibly suf- Benjamin left, Elegudin’s new roommate was a 17-year-old focating in his sleep. In the nursing home, Simond still had named David Simond who had a high-level cervical injury. an open trach, which requires care and monitoring. Fifteen Simond was depressed. He had limited function, came years later, there is still anger in his voice as Elegudin tells from poverty, and had no support system, family, friends, the story. “Only God really knows what happened to David,” or otherwise. He’d lived in an upper floor apartment and he says. “But I know for sure this wouldn’t have happened his family moving to an accessible apartment simply wasn’t had he not been at this place.” going to happen. The little hope he had for some sort of Whatever did happen, Simond was gone. Elegudin was post-injury life worth living was given to him by rehab therapists and staff. traumatized by the experience, and it left him with a ter- A few weeks after Elegudin was discharged from Mount rible feeling of injustice — that something like that should Sinai, he heard that Simond had been discharged as well. never happen. Elegudin still had no idea how or what he Instead of going back to live with family, as Elegudin had, could do, but he knew that he wanted to help make sure Simond was sent to Goldwater. Getting discharged to a nurs- that nobody else got lost and died at night without the ing home or long term care facility was, and still is, common world ever knowing. for anyone who doesn’t have a place to go after rehab. Today, Wheeling Forward gives out one award every When you go to a nursing home, “Everything disap- year: the David Simond Award. Goldwater closed in 2013, pears,” Elegudin says. “They’re housed there like it’s prison. but there are far too many young people who still get Can’t go out when they want, can’t do what they want. shipped to nursing homes across the city. Giving people a Routinely they don’t even get an hour a day outside like chance at a life free from institutionalization is at the core you would in prison.” of Wheeling Forward’s passion, fueling what they do.

32 NEW MOBILITY ing affordable, accessible housing, sips a drink just to Lawrence’s right as Eli sings. Stephan and Eli, both quads, have partnered to start a business called Level the Curve that designs, manufactures and sells adaptive products. Their first product is a sleek, 3-D printed eating tool that allows those with limited dexterity to use multiple utensils independently. The song ends. Benjamin, who is flu- ent in French, is impressed with Eli’s elo- cution. “Eli, that was great,” he marvels as Eli rolls up after singing. “Man, we gotta hang out.” Donohue, a double amputee with a SCI who sometimes helps José with his boxing lessons, wheels over and chats Benjamin up about getting wine for an For years, Benjamin and Elegudin have brought a lot of heart to the great independent living endeavor, and their New York community knows it. adaptive fashion show that he’s helping another member host. The wine, Benja- about community, but it can be hard to Elegudin and Benjamin set out to create min assures him, isn’t a problem. find these days. People lost in their own a support system for those who didn’t have José, the boxing trainer, sits on a couch worlds, as they are. But he works here be- one. Listening to Karaoke in East Harlem with his feet up, finally relaxing for a mo- cause he genuinely enjoys coming, hang- on a Friday night, it’s apparent they’ve gone ment. This scene is exactly why he works ing out with people that are motivated to a step further and helped foster a commu- with the Axis Project. Earlier in the week work, to get fit, to help each other move nity— a group that makes each other, and he’d mentioned that a lot of people talk forward with their lives. their whole city, stronger. Enjoy driving with both hands on the wheel

Switch to DARIOS the digital accelerator ring and main hand brake

- Lifetime warranty - Free at home Your knee airbag pick-up and remains functional. delivery and free at home service - DARIOS is VA accepted.

kempf-usa.com 1-888-453-6738 Your knee space is free of metal rods and you can still adjust your wheel.

JANUARY 2018 33 the doption

verything was going according Ato plan. I had made it through law school, found a job that Epaid enough that I could pay for caregivers without government assistance, and found and mar- ried a beautiful redhead who But for every- ptionBY BRIGHAM FORDHAM happened to be my soul mate. We bought a house and got a dog. one — wheelchair Next on the agenda: kids. That is or not — it is rarely a smooth where things went awry. ride. In many ways, adopting a I had always heard having a child is like falling in love. It is ex- spinal cord injury does not inter- citing. It is frustrating. It is expen- fere with one’s ability to have kids, sive. It can be a beautiful journey, so I took it hard when my doctor or a trail to heartbreak. (And of- officially declared I was shooting ten you’ll find some of each.) The blanks. I had never really asked, only thing for certain with adop- “Why me?” when I broke my neck tion is that you will never be the and became a quad many years same again. Our adoption journey ago, but for some reason find- changed the way I view parents ing out I was infertile shook me of every type, and it proved that to my core. It is one thing to lose sometimes what you want is not as the ability to move your limbs; good as what you get. it is quite another to be stripped of your manhood — which is strangely how I felt about infertil- WHY WOULD ANY- ity. It took several rather awkward ONE PICK A CRIP? tests (I’m not one to enjoy an audi- We decided we wanted to adopt ence) to push me past denial. My an infant, perhaps because it is wife overcame the loss much more the closest to having a child the quickly than I did, and eventu- old-fashioned way. But we soon ally she pulled me through to the learned there are far more people other side. We began to talk about hoping to adopt infants than there adoption. I had no idea how little I are healthy infants available for knew about what that means. adoption. There are considerably Now, looking back after more more infants with complications than 10 years, and having talked or disabilities who are available to with fellow crips who adopted chil- be placed for adoption, but we did dren, I can say adoption is not out not feel ready for that challenge. of reach for folks with disabilities. Honestly, I felt a little guilty, like I Photos by Cassidy Lundgren 34 NEW MOBILITY

Our adoption journey changed the way I

“view parents of every type, and it proved “ that sometimes what you want is not as good as what you get.

was falling into the trap of ableism by nar- away by adoption agencies based on the with adoption, medical history, and, rowing our search to “healthy” children. assumption that a quad cannot be a par- yes, even our sex lives. They came to our When we first went to visit the social ent. Really, why would anyone choose to house to make sure it was toddler-proof ption worker at our adoption agency, I asked place a child with us when there are plen- (even though we were adopting an in- him pointedly about my biggest concern: ty of nondisabled couples to choose from? fant), checked to make sure our dog was “Can we realistically expect to adopt giv- The social worker stammered around a licensed, looked in the cupboards, inter- en the fact that I’m mostly paralyzed?” We bit, finally saying he saw no reason why viewed us, and asked for character refer- had heard stories of quads being turned we should not be able to adopt. This wasn’t ences. If everyone had to go through this terribly comforting. process before having kids, overpopula- Then came the paperwork. tion would not be an issue. Most people don’t have to do This hyper-invasive inquiry has a sal- much to start a family. There utary purpose: to protect children from are no laws that require a cou- those who are not likely to be good par- ple to become certified before ents. But it also creates opportunity for conceiving a child. It is abuse. The information can be used to so easy that some discriminate against or manipulate cou- people do it on ples hoping to adopt. More on that later. accident! But if Along with the paperwork, we created you can’t have a a “profile,” a collage of photos mixed with child the traditional way a letter addressed “Dear Birth Mother,” and want to grow your introducing ourselves and explaining family through adoption, why we are hoping to adopt. Basically, the you have to prove you are profile says in the subtlest terms why the fit to be a parent. expectant parents should choose to place Each state varies some their precious child with us rather than in requirements, but one of the other thousands of couples as a general rule, you waiting to adopt a child. The first time must be ready to lay we adopted, we obsessed over every word bare your life to the per- of the profile, trying to give a flavor for son conducting your “home our lives and personalities. Despite the study.” A background check temptation, we did not downplay my dis- just scratches the surface. We ability or overemphasize it by jumping on were asked to provide detailed the inspirational bandwagon. We played Above: With the judge’s final ruling, baby Isaac joined the Fordham family. information about our finances, it straight, hoping someone might like us Left: Rather than shy away from Brigham’s use of a parenting styles, relationship for who we are. wheelchair, the Fordhams decided to showcase it in with each other, experience The way things are supposed to work their “Dear Parent” profile. JANUARY 2018 35 What Do Birth Mothers Say?

We talked with three birth mothers who Photo by Cassidy Lundgren placed a child in a family where at least one of the parents is disabled. Here is what they shared about their experience.

. Why did you decide to place your Qchild with a family with a disabled parent? Were you looking for this attribute or did you just get lucky? Alyssa: The bio didn’t place a lot of em- phasis on the adoptive parent’s wheelchair, but rather on the accomplishments Brigham and his wife, Sally. and desires of them as individuals and as a couple. What really solidified it for me from here, is that the agency would show told her, “Talk fast; my phone is almost was that the hopeful adoptive dad had our profile to parents considering placing dead.” Her response: “We need to go pick gone on to do great things in the face of a child for adoption. Eventually, an ex- up our baby. They want us there before 5 adversity. His wife very clearly loved him pectant mother would tentatively choose p.m.” Huh? Baby? Boy or girl? and his chair didn’t stop her from marry- us, we would meet her, and if things went As it turns out, the birth parents had ing him, and pursuing the life and family well, we would be considered “matched.” chosen our profile earlier that morning. they wanted. We would continue contact as we waited The baby was just one day old when we Coley: I wasn’t actively searching for a for the baby to be born, and shortly af- picked her up from the agency — a tiny family with a disabled parent, but [the ter the blessed day, the birth mom would little bundle with a full head of dark prospective adoptive mother] became sign away her parental rights to us. Up hair. Nothing was official yet. We were to the ideal choice for me because I knew until that paperwork is signed, which by come back the next day to meet the birth she would raise our son to not see dis- law cannot be before the birth or too soon parents and, if everything worked out, ability — and that would help him in afterward, the birth mother could change sign the initial paperwork. having a relationship with my parented her mind about placement and the whole We didn’t sleep at all that night. No- son, who has a disability. process starts over. body can sleep when there is a newborn Lindsey: When my boyfriend and I I’m not sure if our social worker was in the house, but it was more than that. were looking for a family to place our a poor communicator or if we were just We had already fallen in love with that son, the first thing on our list was not a overanxious, but soon we got into the rit- little girl, and the next day we were sched- parent in a wheelchair. But we found it ual of calling once a week to see if anyone uled to meet the birth parents in what felt so clever how the couple outlined the had looked at our profile. It was a very like the biggest job interview of a lifetime. strengths of wheelchair users, that they disappointing update. The agency had What if they didn’t like us in person? made it look natural. shown our profile several times, but no I remember feeling very self-con- . There are a lot of profiles of parents one had expressed the slightest interest. scious about looking disabled as we were Qhoping to adopt. What tips do you One day, when we called, we were told waiting to meet the birth parents. Then have for wheelchair-users who are trying the social worker would be out of town the birth father came in — a towering, to match with an expectant mother? for the next two weeks and no one would athletic man with ocean blue eyes. He Alyssa: Include good photos. Also, be handling our case in the interim. I was already had lines down his face from make sure your bio mentions disability, frustrated, but also, in a weird way, kind the tears. The birth mother and father but doesn’t focus on it, and that it high- of relieved to put it aside for a while. had each written us a letter, which they lights skill, experience, or passions that handed to us as we introduced ourselves. would make you a good parent — and THE PHONE CALL Through tears, we read the letters, which be real. We’ll realize your wheelchair is Later that week, I was in an office build- described why they had chosen to place normal and fine if that’s how you talk ing with a room full of attorneys, taking their baby with us. The strange part was about it, right? the deposition of a man who claimed we were so grateful that they had chosen Coley: Don’t be afraid to talk about your to know nothing of consequence about us, and yet, they kept thanking us for disability. Be upfront and honest about anything important. In the middle of the providing their child the stability and op- what you can and cannot do. And questions, a woman came into the room portunities that they could not provide don’t be offended at any questions an and put a note in front of me. It said, “Call for her at that time. Clearly, everyone in expectant mother may ask you. home immediately. (It is not bad news.)” that room had the same motivation: to do I took a break and called my wife. I whatever is best for that little girl who we

36 NEW MOBILITY all barely knew and already loved. Our we soon learned, means that the adoptive judgment or the slightest hint of shame. worry that my disability might put off parents remain in contact with the birth When Olivia was younger, she would run birth parents proved unfounded. In his parents, and may even arrange to have over to greet other people in wheelchairs letter to us, the birth father wrote they the birth parents involved in the child’s (complete strangers!) as though they were chose us in part because we had expe- life. When I first heard about open adop- family. When my wife asked her why I rienced the challenges of disability and tion, it sounded to me like a train wreck. use wheelchair, my daughter responded would therefore be able to teach our child Won’t our child be confused about who without hesitation, “Some dads walk and the value of persistence and compassion. her parents are? What if after the adop- some dads roll.” The next several months were pretty tion the birth mother changes her mind Adoption was similarly unalarming great, and at the same time, pretty rough. and goes Fatal Attraction on us? What for her. At first, Olivia assumed that ev- Because our little girl, who we named if our child loves her birth parents more eryone is adopted. One day she asked me Olivia, has a few beautiful drops of Na- than us? who my sister’s birth mother is. When I tive American blood, we needed to get Despite these concerns, we agreed we answered, “Grandma,” she said, “No, her permission from her tribe and jump would consider an open adoption in part birth mother.” I had to explain several through various legal hoops. This all because we thought it might increase our times before she was satisfied. Because would have been simple enough if the chances of being picked by an expectant Olivia developed a relationship with her attorney for the agency knew anything mother. Now, after living 10 years of open birth mother at an early age, she never about how this process is supposed to adoption, I wouldn’t want it any other has to worry about where she came from work. Instead, I had to keep checking on way. My fears about an open adoption or whether her birth mom loves her. She what he was doing (or failing to do), all were largely the result of my own inse- is showered with love by birth parents the while knowing the adoption could curity about being a parent and common and birth-grandparents, as well as my fall through at any moment if the birth misapprehensions about birth parents. wife’s family and mine. parents changed their minds. We were When we first met the birth mother Of course, not everyone has such a whiplashed back and forth between en- of our daughter, it was abundantly clear positive experience with open adoption. joying our new baby and worrying that that she was acting solely out of concern Some adoptive parents struggle to main- we might fail to cross some t’s or dot for her baby. She was not trying to escape tain healthy boundaries between their some i’s and as a result, lose our little girl. responsibility; quite to the contrary, she families and the birth parents of their Finally, after eight months of worrying, thoughtfully decided to sacrifice the joys kids. And some birth parents get frus- nagging, and lawyering, we were able to of immediate motherhood in order to trated because the adoptive parents are go to court and finalized Olivia’s adop- guarantee her child a better future. It was permitting too much or too little interac- tion. It happened to be the same day as one of the most selfless acts of love by a tion with the adopted child, contrary to our wedding anniversary. mother I have ever encountered. what was discussed before the adoption. For us, open adoption has provided Some of these problems can be avoided LIVING OPEN ADOPTION our children with clarity, not confusion. by careful planning prior to placement; Early in the process of becoming certified Olivia responded to learning that she was but, as in all relationships, there’s bound to adopt, we were asked if we were will- adopted the same way she responded to to be miscommunications and struggles ing to consider an “open adoption.” This, seeing that I use a wheelchair — without over boundaries. Adoption can be tough on all sides, but it is definitely worth the struggle.

From Fostering to Adoption THE NEW NORMAL irstin Wansing and her husband Drew, a lot of things are out of your hands and none C4-5 quad, started off providing respite care of that is specific to disability,” she says. Even FOR ADOPTION K Four years after we ad- for kids. After they got to know caseworkers though her state does not discriminate against opted Olivia, we de- and foster families, they decided to become a prospective parent because of their disabil- cided it was about licensed for foster care. To date, they have pro- ity status, she says the child’s needs must be time we found her a vided respite for 34 kids, emergency placement met by at least one parent. “My husband can’t sibling. As we began the for three kids, and long-term placement for physically change diapers or lift our son, but I process for the second time, two kids. They recently adopted one of these can. But there are also plenty of other things we were amazed how much children — an 11-month-old boy. She shares my husband can do and can do really well.” had changed. The rise of open the following tips: • Accept help when it’s offered. “There are only adoption, in combination • Find a foster/adoptive support group. “This so many hours in a day and I have to take care of with the omnipresence is a long, hard road and it doesn’t end the day myself, too,” she says. Also, she utilizes whatever of social media and the the adoption is finalized,” she says, noting that resources are available to her and her family. internet, had changed the the grief and loss of their biological family may • Give yourself grace. “It’s OK if my house looks locus of power in adoptions. affect some children forever. lived in rather than perfect or pristine. Oh, and Traditionally, adoption agen- • Be patient. “There is a lot of waiting and a coffee helps … lots of coffee.” cies have been the control center for adoption, collecting profiles

JANUARY 2018 37 and showing them to expectant parents rather trying to give their child greater and keeping the money if the expectant who are thinking about placing. Today, opportunities in life. mother decided not to place her child for agencies still play this role, but they are One other rule on adoption language. adoption. secondary to websites that charge hope- Don’t ever ask an adopted child who her You would think this information ful adopters a monthly fee to publish “real” parents are, unless you want to be would have led us to carefully select an their profile. These sites advertise to -ex slapped in the face by a very real, though agency we could trust. But the truth is pectant parents and invite them to search perhaps not biologically related, parent we never had a chance to choose. Once the profiles to find the perfect home for who has labored for years raising the we found and connected with a particu- their child. child. Trust me on this. lar set of expectant parents, we knew we Profile sites are just one tool for con- had to play out the process to get our baby necting with people who are thinking of RESIGNING TO FATE home. It may sound strange, but we knew placing a child for adoption. Domestic As we ventured into the new normal of when we first read the profile of a certain adoption is all about networking. You online adoption, my wife used the in- expectant mother that she would be the can troll adoption “situation” Facebook ternet and various Facebook groups one to bring our child into the world. groups, create “hoping to adopt” busi- to learn about adoption laws in differ- This was confirmed when she met us via ness cards to give friends and pregnant ent states, which agencies were deemed Skype and revealed that she had the same strangers (not really), and create an adop- more reputable than others, and which of impression. tion blog that builds on your profile. those agencies seemed to have the most Unfortunately, unbeknownst to the While we were waiting to be matched adoption situations advertised. Much of expectant mother, she was working with with an expectant mother the second the information was helpful; some of it an agency that was particularly greedy, time around, my wife spent countless was horrifying. In Hitler-esque fashion, manipulative, and (we later learned) in hours reading blogs written by birth healthy, blonde, blue-eyed babies — es- constant violation of the law. Their fees moms, hoping to gain better insight into pecially girls — were attached to higher were outrageously high, and their con- their emotions and expectations. This adoption fees. We also heard stories of tract about as dirty as they come. (Have experience helped her feel more con- agencies that lured expectant mothers I mentioned that I’m an attorney?) Under nected to birth moms, and the adoption from other states with promises of free their contract, which was not negotiable, community in general. Through reading rent and with the aim of circumvent- we had to pay a quarter of my annual about birth moms’ experiences — both ing birth father rights. And we heard of income up front and another lump sum good and bad — she felt better prepared agencies failing to provide psychological in the same amount before the child was to further develop her relationship with support for expectant mothers, charging born. These fees were non-refundable, our daughter’s birth mom or any other hopeful adoptive parents outrageous fees, though the agency said if the adoption expectant mothers who came our way. She also joined an adoption support group of fellow adoptive/hopeful adoptive moms. Sharing experiences with and Adoption Resources supporting one another was invaluable to • AbleThrive, ablethrive.com. This website in adoption issues. her in surviving the process. Think “free has articles on parenting from a wheel- • Child Welfare Information Gateway, therapy.” Many of those women are now chair, including some adoption stories. some of her closest friends. 800/394-3366; childwelfare.gov/topics/ Part of networking is learning how • American Academy of Adoption Attor- adoption/. The Child Welfare Information Gateway has resources on all aspects of to talk adoption. We all know the words neys, 317/407-8422; info@adoptionattorneys.org, adoptionattorneys.org. AAAA has domestic and intercountry adoption, with used to describe disability are laden with a directory of over 400 adoption attorneys a focus on adoption from the U.S. foster social assumptions and history. I cringe nationwide. care system. when an outsider talks about persons who are “wheelchair-bound” or — worse • AdoptMatch, 215/735-9988 or 800/TO- • Creating a Family, creatingafamily.org/ “invalid” — because such words imply a ADOPT; match.adopt.org. A service of the adoption/comparison-country-charts/. helplessness that I do not embrace. The National Adoption Center, AdoptMatch Creating a Family tracks the requirements language of adoption is similarly preg- allows you to search for adoption agencies, for adoption in various countries, so you nant with subtle prejudices. For exam- read reviews left by other families who can see which countries have “medical his- ple, when someone says a mother “gave have worked with the agency and cor- tory” limits on parents hoping to adopt. respond directly with the agency anony- up” her child for adoption, it sounds • National Council for Adoption, 703/299- mously via the AdoptMatch website. like she got rid of something she didn’t 6633; [email protected], adoption- want (like someone “gives up” smoking) • Center for Adoption Support and council.org. The National Council for Adop- or that the person shrunk from a chal- Education, 301/476-8525; caseadopt@ tion’s website has a wealth of information lenge (as when one “gives up” fighting). It adoptionsupport.org; adoptionsupport. and links. Check out the “financial resourc- is better to say she “placed” the child for org. CASE provides research and access to es” tab, which provides links to adoption adoption. This suggests birth parents are mental health professionals who specialize grants, loans, and fundraising sites. not trying to escape responsibility, but

38 NEW MOBILITY International Options Surprising as it may seem, people also have babies in other countries! Different countries have different rules for adoption, and they change often. So do your homework. Here are two international adoption stories. Barb and Brett When Barb, who is a para, and her husband decided on international adoption, they intentionally chose a country they knew would work with adoptive parents with disabilities without requiring both parents to travel. In 2003, China was that country. They had to provide exten- sive documentation, but the adoption Olivia sets the pace for a stroll with her doggie and her Daddy. went off without a hitch. When asked about how her daughter, who was 14 months old at placement, reacted to the failed they would put the money toward out an important element of our person- wheelchair, Barb said, “I don’t recall her another adoption, if we so happened to alities — humor, especially what some ever thinking twice about the chair. She use them again. Every part of my legal, might call “sick” humor. We revised the seemed to instinctively know that she had rational mind told me to run from the profile and included a box listing the top to help me out by standing to get out of agreement, but deep within my heart, I 10 reasons why it is great to have a dad the crib and climbing up on my foot rests knew it would work out. in a wheelchair. This unabashed refer- to get into my lap. She never ran away from me, and frankly, I think I’ve done too That’s not to say, of course, that I ence to the wheelchair, it turns out, was good of a job being independent. I think never had second thoughts or concerns one of the deciding factors for the birth she still believes I should open the doors over the next few months. At one point, parents of our son. They had both grown for her and not the other way around!” the expectant parents cut off contact with up with a father who is disabled, and they Cheryl and Mick us, and we thought all was lost. The agen- knew something that I hoped was true What do you get when you cross a friend, cy strategically kept us on a tight leash, but couldn’t know for sure: Sometimes, a doctor, and nun? A very different route withholding information and inserting having a disability helps you to be a bet- to international adoption. Cheryl and themselves in the middle of every discus- ter parent. her husband, Mick, a C1-2 quad, decided sion with the expectant parents, even re- When we first began our adoption to adopt a child from El Salvador. They dacting emails. journey, we were worried my disability did not use an agency. Instead, they used a series of personal connections Eventually, our son, Isaac, was born, would limit our ability to adopt. And it to find their child. The outbreak of civil may very well be that we missed out on and in due course, the adoption was fi- war slowed the process, but they were nalized. Being born into an open adop- some adoption opportunities because eventually matched with twin newborns. tion, Isaac gets the benefit of not only of how others view disability. But They were cleared to bring the children to grandparents on each side, but also birth when it came down to finding the U.S. by the U.S. embassy. The Division grandparents and birth aunts and uncles, expectant parents who ap- of Family Services in El Salvador, however, recommended they not be allowed to and even birth great-grandparents. Basi- preciated us for who we adopt the children because of Mick’s are, paralyzed limbs and cally, this means he gets lots of presents, disability. Cheryl and Mick appealed the so he likes it. all, it worked out perfectly. decision, but were denied a second time. They chose to entrust us with They appealed again, this time to the what they held most precious, not Supreme Court. In an unprecedented THE WHEELCHAIR despite my disability, but because move, the judge did not follow the ADVANTAGE of what it showed about us. As our recommendation of the Division of Family When we were looking to adopt the sec- kids grow up, I’m excited for Services and granted permission for the children to be adopted. The family later ond time, we paid a specialist to give us them to learn about the cour- found out that the judge had had throat advice on our profile and publish photo age, sacrifice, and love their cancer and used an electronic device to booklets with our story. It was worth ev- birth parents demonstrated when communicate. This may explain his more ery penny. After getting to know us, she faced with an excruciatingly difficult enlightened perspective on disability. recognized our profile completely left decision.

JANUARY 2018 39 MOTORVATIONBy Michael Collins

THE SAM CAR: DRIVING INTO OUR FUTURE

People who are paralyzed at a high — the driver. When it became clear Now in 2014. Since its inception, the cervical level or who cannot use their that the team required the addition of foundation has raised and awarded arms for another reason may soon someone who was quadriplegic and also over $10 million in the form of grants. benefit from a promising development a successful racing driver, the obvious “The foundation has invested heavily that could open up the world of driving choice was Sam Schmidt. in everything from stem cell research for them. The breakthrough is the Schmidt has driven race cars for to exoskeletons to rehabilitation result of an effort by Arrow Electronics most of his life, but his successful racing techniques,” says Schmidt. “All with the to develop a system that would allow career was cut short as a result of an goal of solving as many problems as quadriplegics to control all aspects of accident during a practice session for possible that face the community.” driving using only their heads. The result an IndyCar race in 2000. A C3-4 spinal For Joe Verrengia, Arrow’s is the SAM Car, which stands for Semi- cord injury left him paralyzed from the global director of corporate social Autonomous Motorcar. shoulders down, but did not prevent him responsibility, Schmidt’s racing Arrow Electronics’ vision went beyond from remaining involved in the sport. talent and knowledge, coupled with the basic operation of a car. The company In 2001 he established Sam Schmidt the mission of his foundation, was wanted a system that could control a Motorsports, and in 2013 he partnered impressive. “Once we met Sam, it car in all driving situations, including in instantly became a partnership of ideas traffic, on winding roads and even at and skills. While Arrow had the SAM Car extremely high speeds. They believed idea prior to meeting Sam, the actual car that speed was important in order to and technology package were developed show the safety of the system, as well as with him. This has evolved every year. to generate interest in the project and We don’t develop the technology in momentum for future applications. our own lab and just ask him to drive This is surprising, since Arrow it. The development process continues Electronics is not in the business of to be a joint effort.” Schmidt points out building automobiles. As an international that being a partner on the team has made the entire process go smoothly. company that provides technological Within four months he was driving in a solutions and electronic components simulator, and soon after was driving the to customers around the world, this Sam Schmidt mugs from behind the wheel, car on the track. particular project was unlike anything where he belongs. they had undertaken in the past. Its plan was to use existing components, with Ric Peterson to form Schmidt The Car including a high-speed automobile that Peterson Motorsports. Those teams The SAM Car is a modified 2016 Corvette is available to everyone, and to put have campaigned multiple cars in the Z06 that is outfitted with control systems them together in a manner that would Indy Lights and IndyCar racing series. that can be operated by the driver using accomplish its objective. Prior to Schmidt’s involvement the tilt of a head to turn, sip and puff The initial team, consisting of eight with the SAM car, he had been firmly for acceleration and braking, plus voice engineers who worked for Arrow and committed to the search for a cure or commands for accessories like turn three from a tech partner company, set treatment for spinal cord injury that signals, wipers, etc. Unlike the self-driving to work in 2013. Today there are three could allow others who are paralyzed to vehicles that appear on the verge of being Arrow engineers working on the project, improve function. He formed the Sam unleashed on our roadways fairly soon, the aided by contractors when needed, Schmidt Paralysis Foundation in 2000, SAM vehicle is controlled completely by and another critical team member which was renamed Conquer Paralysis the driver and not under computer control.

40 NEW MOBILITY HOW THE SAM CAR HAS IMPACTED SAM SCHMIDT’S LIFE Since he started driving the SAM Car, Schmidt has … • Driven the SAM Car at 152 mph around the oval track at the Indianapolis Motor Speedway. • Raced head to head with Mario Andretti on the road course at the Indianapolis Motor Speedway. • Driven the Pikes Peak International Hill Climb course with a finish time of 15 minutes, which required negotiating a mountain road with precipitous drop-offs throughout the 12 miles and 156 turns to reach the 14,110-feet summit. While he was not entered in the race, his time was faster than more than 20 of the race competitors. • Received a four-year renewal of the first semi- autonomous driver’s license issued by the state of Nevada. Sam Schmidt • Driven the SAM Car at 192 mph on a runway at Nellis poses with his Air Force Base in Nevada — a new speed record for wife, Sheila, daughter, Sa- a semi-autonomous vehicle — during the base’s 2017 vannah, and Aviation Nation celebration. son, Spencer.

Being able to be back in control of Some of the desirable long-term those who may benefit from the SAM a vehicle after his injury has made a big results mentioned by the SAM project Car system. Schmidt has also driven the difference in Schmidt’s life. “This situation team would include applications so that SAM Car on the streets of Las Vegas, reminds me of being an IndyCar driver people with similar disabilities can work Washington, D.C., and San Francisco, again. I provide ideas of how to make the as shuttle or rideshare drivers, farm allowing him to drive with his family in drive system intuitive and safe so that we equipment operators or forklift drivers. a car for the first time since his injury can go faster. I am surrounded by a team For Schmidt “the goal is not only driving, in 2000. from Arrow that takes that information but putting thousands back to work with and makes it happen. I can’t tell you how this technology.” He also points out that Resources awesome it feels to be a driver again!” “for disabled veterans, the ability to pay • Arrow Electronics, www.arrow.com/ In the not too distant future, the Arrow the mortgage and put food on the table en/about-arrow/overview team plans to allow other drivers with will have an immense impact on their • Conquer Paralysis Now, disabilities to take a drive in the SAM Car quality of life.” conquerparalysisnow.org or one set up with a similar control system. The importance of rediscovering • Schmidt Peterson Motorsports, Perhaps more importantly, Verrengia says driving cannot be overestimated for spmindycar.com that the team is already thinking beyond the SAM project. “While SAM stands for Semi-Autonomous Motorcar, in the future we are leaning towards changing it to Semi-Autonomous Mobility as we look to pursue other human-to-machine interface technologies beyond the car that will help the disabled community,” he says. Furthermore, Arrow Electronics has not patented the technology it developed, and will share it with other organizations that would use it to help people with disabilities re-enter the workforce. The company will assist those developers by selling them the components needed to complete their projects. Schmidt and his team are all smiles after he completes a four-lap run at the Indianapolis Motor Speedway.

JANUARY 2018 41 RESEARCH By Kate Willette MATTERS

“My husband has a C6 injury, and I’ve STEM CELL REALITY CHECK made it my job to Sometimes I think of the paralysis moment happens in the form of a follow any science research world as a sort of Pentagon. It’s news story, or a video someone shares a monster-sized building labeled Spinal to your social media feed. Today’s that promises to Cord Injury Repair, and nobody can get example is a 74-second video with an help him.” in without a lot of specialized creden- impressive headline: tials. Like the actual Pentagon, the one Paralysis Treatment with Stem Cells: in my imagination has several wings, one Paralyzed patient treated with stem cells for each of the main research thrusts. regains upper body movement. First, notice that it’s in a press release. Today we’re outside the wing with the That was posted on August 16, This is a company offering its best ver- gold-plated sign that says Stem Cell 2017, through an online magazine called sion of what it’s doing to the press — the Research, standing in front of a small The Science Explorer. By the end of the video is advertising. window with the blinds pulled down. month it had more than 440,000 views Second, what’s the company’s rea- Someone inside has tilted the blinds to and 7,551 shares in social media. It came son for trying to draw attention to let us get a peek at what’s happening with a brief video showing a young man itself in this way? This is a product in inside the room. named Kris Boesen using his iPhone, development, meaning it’s not ready Unfortunately, we still can’t look opening a bottle of Gatorade, lifting for the public yet. They’re not selling it, directly inside. Instead, it’s as if we’re weights over his head, and managing a at least not to us. The company’s tar- looking into a sort of fun- coffee cup. Boesen had a high, motor- get for the announcement is not you or house distorting mirror. complete cervical injury, so all of that me, it’s investors. Things in this mirror would be unusual, to put it mildly. Third, what are they selling? At this are not The video itself had hit the internet point, Asterias is selling the potential of as close a week earlier as part of a press release the eventual product to investors. That’s or as large offered to the public by a company called the reason for the press release. They as they seem. Asterias. I was one of the thousands of want people with money to notice them Usually this people who got tagged by friends who and become convinced that investing now blinds-tilting thought I’d be interested in that news. It is a good idea. I can’t say how glad I am made sense; my husband has a C6 injury, to see them doing this; I’ve met some of and I’ve made it my job to follow any sci- the scientists at Asterias, and they’re very ence that promises to help him. disciplined, ambitious people. This press So, what should our community make release means they believe they have of this video? something that will be of great value. So, here’s what our partial and distorted view into the Stem Cell Wing shows us:

Quad Kris Boesen demonstrated manual dexterity in a video that 42 NEW MOBILITY went viral. Asterias has created some kind of cell- So what is the SCIStar trial all about? same line of infant wrapper cells is the based product aimed at our community. It’s about replacing lost cells, and the product that Asterias is using today — They’re testing to find out whether or cells they’re trying to replace are the it’s what they put into Boesen’s neck. not their designer cells do no harm and wrapper cells. Their plan is to put what The 2005 paper also holds the key to improve life with SCI in some measurable you might think of as infant wrapper another big question for us: Will this ever way. They’re pleased with the results so cells (called oligodendrocyte precursors) help me or someone I love who has a spi- far. They’ve named the test they’re con- into damaged cords. The infant wrapper nal cord injury? ducting SCIStar. cells will then mature into adult cells, The answer is, not directly. If you Just what are these designer cells? which will produce enough myelin to read the fine print at the Asterias web- wrap up lots of healthy-but-nonproduc- site, one question that pops out is who Cell Replacement tive axons that were left naked by the exactly is a candidate for their study. Strategies: A Primer injury. In theory, what happens next is The answer? People with injuries that There are three main kinds of cells that the axons get back to work. Fingers are between two and six weeks old. in a working spinal cord. You need move. Numb spots wake up. Boom, sen- This is the range they’re calling “sub- all three, because they have to work sation and function. That’s the agenda. acute,” and the reason for that particular together, and if you lose some of them Where do they get these wrapper restriction is that when those scientists to injury, one of the ways to repair cells? back in California tried putting their cells that loss seems obvious: get some That’s a long, involved story that goes into rats with longer-term injuries (usu- replacement cells. This is harder than all the way back to the late ’90s. The ally called “chronic SCI”), the rats didn’t it sounds, because we don’t have big infant wrapper cells are all derived from a get better. Some of them actually got stashes of these three kinds lying single donated human blastocyst that has worse. around, and we don’t have bodies that grown from a fertilized egg left over and This particular wrapper cell replace- can build them out of spare parts. If donated after a fertility treatment. That ment project, then, is only aimed at the cells are going to be replaced, we’ll means the cells used in this trial started people less than two months post-injury. need a source. The three kinds of cells out as stem cells, which means that they So when your friends link you to the next are, in very rough lay terms: can — under the right conditions — be story of how Asterias is on the brink of Message carriers (neurons). A message- kept alive and reproducing indefinitely. solving spinal cord injury with stem cells, carrying cell does its job by send- In 2005 some scientists in California you can tell them that this will, maybe ing chemical/electrical signals down published a paper showing that they’d someday, be a therapy for those unlucky gossamer strands called axons. Each succeeded in using those stem cells to people whose injuries are still in the message-carrying cell has just one axon create a healthy line of infant wrapper future. May it be so. for sending information, along with lots cells. It was quite a trick, and the fact In the meantime, there are other of little feelers (dendrites) for taking in that those cells helped paralyzed rats projects aimed at people whose inju- information from other axons. You have to regain function is one of the memo- ries are much, much older. More on about 86 billion of these cells in your rable moments in SCI history. That that another time. brain, and another 15 billion in your cord, give or take. Wrappers (oligodendrocytes). A wrapper cell’s job is to produce this stuff called myelin and get it wrapped around every single axon. Without the wrapping, axons don’t work right. The messages aren’t sent, or are sent distorted, or aren’t received, or travel too slowly. This means that even if you have plenty of perfectly good messen- ger cells, your cord still isn’t going to ELECTRIC ADVENTURE VEHICLES work properly. Management and Maintenance (astro- cytes). These guys mainly do the care and feeding and cleanup after their two partners. They’re like facilitators at a giant meeting, making sure the air-con- ditioning works, everybody has enough to eat and there’s plenty of toilet paper. OFF-ROAD | ALL-TERRAIN | ROAD QUAD | PARA-READY They’re essential.

JANUARY 2018 43 Apogee Essentials Intermittent Catheters Depend on quality, comfort and value from a name you trust: Hollister Incorporated.

Available in non-lubricated and lubricated hydrophilic coated catheters. For a free sample, visit hollister.com/apogeeessentials or call 888.740.8999

44 NEW MOBILITY MARKETPLACE

EMPLOYMENT OPPORTUNITY Job Title: Americans with Disabilities Act (ADA) Coordinator (Part-Time) Description: The Americans with Disabilities Act (ADA) Coordinator will build upon and administer the ADA accommodation program from start to finish. The position will also be involved in the Light Duty/Return-to-Work program. Other duties include but are not limited to the following: Identifies and performs outreach to employees possibly requiring accommodations; educates manage- NEW ment and employees on the rights and duties under the ADA; coordinates with SEATING! management and employees to develop and provide employees effective and reasonable accommodations; develops written materials and other informational • Pressure relieving pieces regarding the ADA program; develops and maintains internal measures • Injection Molded foam to track ADA status and compliance and maintains and documents records of • 25% better than ensolite all disability and accommodation issues ensures compliance with applicable • Outlasts steel or aluminum laws, regulations, and policies; assures that workers with disabilities are provided • Multi-configurable tub/shower/toilet effective and reasonable accommodations allowing them to work productively • Options: Carry case, flat or and safely; assure Township-Sponsored activities, Township Facilities and events commode seats, free standing address accessibility and accommodation concerns. leg support • Optional leg support shown on product above Requirements: Bachelor’s degree in social sciences, human resource management, business administration or related field and two years of personnel administration experience are required (or a combination of education and/or training and/or experience which provides an equivalent background required to perform the work of the class); a minimum of eighteen (18) months of experience in a position that involved evaluating and administering reasonable accommodation issues subject to the ADA or §504 and completion of a course on barrier-free design or ADA accessibility guidelines which was sponsored or approved by the • Ab Crunch • Single-dual curls New Jersey Department of Community Affairs or a department which oversees • High bicep curl the Uniform Construction Code in any other State, the American Institute of • Single & dual tricep pulldown Architects, the Paralyzed Veterans Association, or the United Spinal Association, • Tricep extension • Lat pulldown within twelve (12) months of hire. • Multi-level row NEW EXERCISES! Salary: DOQ • Bench & incline press • Pec fly • Dumbell pec fly Hours: Part-Time, three days weekly (not to exceed twenty one hours per week). + MORE Apply: Send resume or application to: Ms. Braedon Gregory, HRIS Coordinator, Human Resources Department, Township of Montclair, 205 Claremont Avenue, Montclair, New Jersey 07042 or email: [email protected] VA Approved • Limited Lifetime Warranty Closing Date: Job posting will remain open until position is filled. WWW.APEXEQ.COM • 800-851-1122

JANUARY 2018 45 MARKETPLACE

JUMP START YOUR SEX LIFE

“A small family business making a big difference in people’s lives.” VIBERECT • Treats men with erectile dysfunction • Treats SCI men with ejaculatory dysfunction. - Catheters - Bladder & Bowel Care $200 OFF FERTICARE - Any disposable product 10% OFF VIBERECT on the market! (OR ANY OTHER PRODUCT WE SELL) FERTI CARE® PERSONAL NATIONAL NO COST SHIPPING. • The Ferticare personal treats men with ejaclatory dysfunction and Accepting woman with orgazmic dysfunction/ vaginal dryness. - Medicare, • FDA approved/ VA approved. - Medi-Medi & • Inexpensive alternative to fertility clinics. - Most private insurances • Can also help with incontinence thru Kegel Exercise. 60 capsules for only $25.95 Switching is easy, (Not FDA approved for sale inside the USA for incontinence) call or email us today. Orion Medical Group, Inc. Call (888) 579-3765 or email (Full D.M.E. Pharmacy Specializing S.C.I) Tel. 714-649-9284 / 1-888-64-ORION (67466) [email protected] Fax. 714-594-4038 [email protected] www.AppleWestHMS.com www.medicalvibrator.com

Disability Changes Lives, But So Can You. United Spinal Association served over 1 million people with disabilities last year—help us touch 1 million more. Donate Today Your support helps us: • Maintain valuable member benefits, including • Offer one-on-one guidance and resources on a wide free subscription to New Mobility range of disability-related issues • Provide local assistance through our 50+ chapters and • Advance social equality and disability rights 190+ peer support groups • Empower people to become effective self-advocates • Facilitate new opportunities to lead active, • Improve access to VA/social security benefits, independent lives affordable healthcare, vital mobility equipment, • Raise public awareness on issues that impact the employment, and accessible housing/transportation disability community Thank you and best wishes for a Happy Holiday Season and a Healthy and Prosperous New Year!

Change a life today at WWW.UNITEDSPINAL.ORG/DONATE

46 NEW MOBILITY CLASSIFIEDS

FOR SALE VACATIONS Howe and Howe Ripchair 3.0 Excellent New Zealand disability vehicles, hand a special thanks to those that support condition. Less than 1 yr old. Garage kept. control cars, left foot accelerator cars for Only 10hrs. Joystick control 10mph. Front hire. Explore New Zealand – we make it and rear LED’s. Gun rack. 5000lbs winch. easy! We are happy to pass on our for- Purchased new originally for over $42,000. mer clients’ recommendations of acces- Asking $29,000 . sible activities and accommodation. See http//finalbreak.com/ripchair www.freedom mobility.co.nz Old House for sale – C5-6 SCI incomplete. Orchard Beach, Maine First floor entire- PREMIER LEVEL Accessible 4-3-3. Waterfront with access ly wheelchair accessible. House sleeps to gulf, pool/spa. Dock with boat lift. Wellspect HealthCare’s LoFric® Origo™ is designed to 10. Visit www.dunegrasscottage.com $775K. Tampa, FL. Contact: TLWilson7@ provide safe, hygienic and convenient catheterization – and is NOW available in STRAIGHT TIP! Contact us for verizon.net Ocean-front condo, wheelchair friendly, FREE samples. 855/456-3742 or www.wellspect.us Chairman HD3 Electric Wheelchair sleeps six, pool, boardwalk to beach. Rents Excellent condition. Used for 1 yr. This chair daily, weekly, monthly. St. Simons Is., GA. tilts, reclines and elevates Max weight 400 [email protected] 419-569-6114. LEADER lbs. For additional information contact Cape May farmhouse near beach. First Abbvie, www.abbvie.com 973-934-1391 for photos. Asking $3800.00 floor entirely wheelchair accessible. Sleeps Hollister: The Onli hydrophilic catheter from Hollis- Nationwide Wheelchair Van Rentals. For eight. Visit www.beautifullyaccessible.com ter is designed to provide a hassle-free and mess- the next time you want to get out, vaca- for more info and reservations. free experience. Request a sample at 888/740-8999 tion, doctors appointment, or try before or hollister.com/onli you buy. Learn more at www.BLVD.com Accessible Journeys Over 1500 wheelchair Accessible making the world more Vehicles for sale at one website. A accessible since 1985 ASSOCIATE complete selection of New, Used and Pre- Holland’s Spring Tulips AdvaMed: Failure of a wound to heal can have Owned wheelchair vehicles from dealers Rhine River Cruises a profound effect on QOL. MedTech has helped and private parties nationwide. Check it Barcelona & Madrid evolve wound treatment, reducing complications out today. www.blvd.com Venice & Ljubljana and improving QOL. www.lifechanginginnovation.org Accessible Italy by train Allergan: www.botox.com USA Jeans makes pants designed for sit- Vietnam-Thailand-Cambodia ting. Call Darlene at 800-935-5170 or visit Kenya-Tanzania-Zambia-South Africa Hill-Rom: Trusted in the hospital, trusted at home. www.USAJeans.net 800.846.4537 Call a Patient Advocate today. 800/833-4291, www.accessiblejourneys.com homecare.hill-rom.com ISO NMEDA: NMEDA provides adaptive transportation TO PLACE A CLASSIFIED solutions for you, your family, or caregivers. Find a Gentleman looking to get a letter from a AD IN NEW MOBILITY local NMEDA Dealer today: 800/833- 0427, penpal. Write to Gary Cooper, 600 E. Perry www.nmeda.com St. Rossville, Kansas 66533 Call 800-404-2898, ext. 7253 or email your request to [email protected] VACATIONS Print Rates: SUPPORTERS Costa Rica! Accessible 2+ bedroom • $1.30 per word house close to beach. Large bathroom, • $1.00 per word Belt & Bruner, P.C., www.alabamainjurylawyer.com roll-in shower, adjustable bed, pool with for USA Members Cure Medical, https://curemedical.com pulley lift, AC, wifi. Accessible taxi service. • Boxed Ads - $105 per inch The Krist Law Firm, P.C., www.houstoninjurylawyer.com Recommended for adventurous travel- Michigan Auto Law, www.michiganautolaw.com ers. Sleeps 7. 952-270-3027 www.vrbo. • Pre-Payment Required: personal-injuries/back-injury/spinal-cord-injuries com/925788 VISA, MasterCard, AMEX, Discover Rare Patient Voice, www.rarepatientvoice.com Florida Keys! Accessible 2 /bedroom Trusted Mobility, www.trustedmobilityrepair.com Waterfront Home, Large Bathroom with • All Paid Print Classifieds get a 1 month FREE Web Classified Roll-In Shower. Spectacular View, Resort Amenities included. 561-627-1941. Online Only Rate: For more information on how you can support United Spinal and become a business member, please contact Megan Lee at www.placidaccess.com 1 month = $16 3 months = $36 [email protected] or 718/803-3782, ext. 7253. Voted “Best Accessible Vacation 6 months = $72 Acknowledgements on our website, in New Mobility, in United 9 months = $108 EVER” (by those who stay here). Visit Spinal e-news or any other United Spinal publication should not be 12 months = $144 considered as endorsements of any product or service. www.vrbo.com/434500... read the reviews! newmobility.com/classifieds

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

PLEASE REMAIN SEATED

Cartoonist Mat Barton has been passionate about drawing since the second grade, and in 2014 he and collabora- tor Adam Cooper joined the exclusive ranks of cartoonists who’ve been published in the New Yorker. Where will Cooper and Barton (CAB) take “Please Remain Seated”? Barton’s not sure how it will unfold, but his all- time favorite comic strip is Calvin and Hobbes. “I still go back and reread those and I’m just amazed at what a perfect strip it is,” he says. A T5 para since a 2012 mountain biking accident, Barton lives in Portland, Oregon with his wife, Jessica, and 7-month-old son, Theo.

48 NEW MOBILITY Made for you by:

Jan Sarat Manufacturing

Custom-molded seating systems that fit. Quality that improves lives. Permobil introduces ROHO® Custom Seating – available now!

Now there’s a better option for your clients Every day, we work to fulfill our promise to offer with the most complex postural challenges premium seating solutions for every client. The clinical – ROHO Custom Seating. Our cushions and and personal benefits of ROHO Custom Seating are backs are made with the attention to detail and quality the latest expression of this pledge. your clients need – and that you’ve come to expect.

Contact us to learn more about 800-851-3449 our customization process. www.permobilus.com Reflection® Custom Contoured Cushions 100 N. Florida Ave. are available now. [email protected] Belleville, IL 62221-5429

ROHO Custom Seating Ad 8X10.75.indd 1 3/31/17 3:34 PM 20º OF ANTERIOR TILT

YOUR WORLD WITHIN REACH.

Your world isn’t one dimensional. Your seat elevator shouldn’t be either. ActiveReach™ technology is the ultimate advantage in accessing your environment. By combining 12” of seat elevation and up to 20º of forward tilt, Permobil’s ActiveReach™ technology enables you to reach beyond obstructions, into high cabinets, and can even assist in transfers. Truly putting your world within reach.

FEATURING

FOR MORE INFORMATION VISIT WWW.PERMOBILUS.COM