Our National Parks: Accessible Treasures

Fashion on Wheels Inter-Abled Couples Ballooning

life beyond wheels

newmobility.com OCT 2015 $4 UPWARD MOBILITY

T2 Paraplegic and Firefighter Captain Bill Winchester cooks while chatting with his son Jed. As the first individual in the United States to own a TEK RMD, Bill was able to perform multiple tasks and access places for the first time since his injury.

Robotic (800) 659-4548 Mobilization www.InnovationsHealth.com Device Powered by UPWARD MOBILITY WITH THE TEK-RMD

CHANGE YOUR PERSPECTIVE, NOT YOUR HOME Now you can stand without assistance and gracefully maneuver through your home, office, or other indoor space with the TEK-RMD from Innovations Health. TEK’s tiny footprint and hands- free standing position dramatically increases access to your home, lets you navigate your office and converse with colleagues at eye level, and effortlessly glide through crowded stores.

TEK allows you to enter and use small bathrooms and other tight spaces without costly modifications to your home. With TEK’s remote control, you summon it to your bed or wheelchair when you need it, and send it out of the way when you don’t. TEK lets you board without assistance in a couple of minutes, stand, and get back on the move in a comfortable, safe, elevated position that promotes better health and improves your perspective. Visit us online at www.InnovationsHealth.com to learn how to get a TEK of your own.

FOOTPRINT COMPARISON

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GoWing Powered by ErGOsafe transfertrans harness Powered by NEW Catheter for men

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Important Safety Information: SpeediCath Compact Male is indicated for use by patients with chronic urine retention and patients with a post void residual volume (PVR) due to neurogenic and non-neurogenic voiding dysfunction. The catheter is inserted into the urethra to reach the bladder allowing urine to drain. The device is intended for males only. SpeediCath catheters are available by prescription only. Patients performing self-catheterization should follow the advice of, and direct questions 1. Those who have 2 or more UTI’s within a 12-month period may qualify for a about use of the product to, their medical professional. Before using the device, carefully read the product labels and information accompanying the sterile catheter kit or closed system/set. For those currently using straight catheters, device including the instructions for use which contain additional safety information. The SpeediCath catheter is for single-use only; discard it after documentation of qualification for closed system/set reimbursement may be required. use. If you experience symptoms of a urinary tract infection, or are unable to pass the catheter into the bladder, contact your healthcare professional. The risk information provided here is not comprehensive. To learn more, talk to your healthcare provider. For further question, call Coloplast Corp. at 1-866-226-6362 and/or consult the company website at www.coloplast.us

M3264N 05.15

M3264N SCCM-NewMobilityAd.indd 1 8/17/15 12:00 PM CONTENTS VOLUME 26 NUMBER 265 October 2015

life beyond wheels

FEATURES

15 HOT AIR BALLOONING Just because you use a wheelchair doesn’t mean you can’t enjoy flying high in one of the oldest forms of air travel. BY ELLEN STOHL.

21 FASHION TIPS FROM A PRO Can’t find clothes that work with your wheelchair? KATE MATELAN helps you find the right solution and breaks down accessible fashion myths.

41 INTER-ABLED COUPLES Relationships between wheelchair users and nondisabled people happen all the time, but what makes them work? BY BEN MATTLIN. Photo by Edward Acker

COVER STORY ACCESS AT NATIONAL PARKS 28

Ashley Lyn Olson of wheelchairtraveling.com is one of the country’s leading voices on accessible travel, and in this month’s cover story she launches her Access to Parks Project by exploring three of the more than 400 national parks that enrich America. Read about her adventures through Cuyahoga National Park, Shenandoah National Park and Mammoth Cave National Park and learn all the accessible highlights.

DEPARTMENTS

4 BULLY PULPIT 12 EAT WELL, LIVE WELL

Cover and Contents Photos by 5 CONTRIBUTORS 47 SPOTLIGHT wheelchairtraveling.com 6 LETTERS 48 UNITED SPINAL NEWS 8 NEWS 50 RAISING A RUCKUS 10 SCI LIFE 56 CRIP BUZZ BULLY PULPIT

life beyond wheels OCTOBER 2015

NEW MOBILITY IS THE MONTHLY MAGAZINE OF

PRESIDENT & CEO: JAMES WEISMAN VICE PRESIDENT OF PUBLICATIONS: JEAN DOBBS The Untold Story EDITORIAL It’s hard to believe that Jeff Shannon passed EDITORIAL DIRECTOR: JEAN DOBBS A state agency found it discrim- away almost two years ago. He was not only an EDITOR: TIM GILMER important voice in the disability community, MANAGING EDITOR: JOSIE BYZEK inatory, and Amazon agreed to a but also a gifted “crossover” media journalist SENIOR EDITOR: IAN RUDER confidential settlement. SENIOR CORRESPONDENT: BOB VOGEL whose work was recognized and supported by Roger Ebert. The part of his story that hasn’t opened. So he didn’t look for another job; making travel easy for individuals with spinalEDITORIAL cord disabilitie SUBMISSIONS:s been told yet, however, is how another media he waited — while taking freelance writing [email protected] giant — Amazon.com — took unfair advantage jobs. He never got that chance to re-apply. An of Jeff’s considerable talent, and him. “in-house” competitor was hired instead. “Jeff Jeff, a C5 quad, wanted to tell this story in was justifiably enraged, and contacted a law- CUSTOMER SERVICE NM but decided against it. He had signed a yer,” says Kevin. A Washington state agency Toll-free 800/404-2898, confidentiality agreement with Amazon that ruled it discriminatory, and Amazon agreed to ext. 7203 prohibited disclosure of the details of his em- a confidential settlement. ployment. And, as was typical of Jeff, he did The settlement was much less than he not want Amazon to feel bitter about hiring could have earned had he been able to stay on ADVERTISING SALES people with disabilities. at Amazon. But the real rub is that Jeff’s stellar 718/803-3782 An Aug. 15 New York Times article cor- work ethic had been ignored. Like many of us NATIONAL SALES MANAGER: roborates Jeff’s unfortunate experience by with computer-dependent positions, Jeff had MEGAN LEE, EXT. 7253 exposing Amazon as having a high-pressure, a work-from-home option, but in Jeff’s case, AD MATERIALS: at times brutal, work environment that en- the option worked against him. He did his work DEANNA FIKE, EXT. 7250 courages combative competition via a secret diligently, mostly at Amazon, occasionally from feedback system. Backstabbing for personal home, but the Amazon secret feedback ma- PRODUCTION gain is, in effect, rewarded. Women employ- chine favors employees who work “in-house.” PRODUCTION MANAGER: DEANNA FIKE ees report a high incidence of discriminatory “He really got screwed by the whole situ- practices. Employees work as many as 80 ation, and Amazon continues to profit by it,” CIRCULATION hours per week. “Purposeful Darwinism,” a says Kevin. “The hundreds of DVD reviews he CIRCULATION MANAGER: former Amazon human resources director wrote, along with the thousands of others he BEVERLY SMITH called it. The average work tenure at Amazon edited, provide the bulk of the critical source CIRCULATION COORDINATOR: is one year. Jeff lasted three times the norm, material that is still up on the Amazon site.” MARIA KURTZ but it took its toll. The cruel irony is Jeff was the best kind of “They really treated him especially poorly,” employee. “He would tackle a project like a POSTMASTER: Send address changes to New Mobility, 120-34 Queens Blvd, #320, Kew Gardens NY 11415. says his brother, Kevin. “It was shock enough pit bull,” says Sue Shannon, Jeff’s sister. “He Subscription rates: $27.95/year; $35.95/year in Canada; to my wife and me, helping him empty out his would isolate himself in his office and just $67.95/year international via airmail. office under armed escort. But Jeff’s bigger hammer away.” Why wasn’t the “all-seeing” New Mobility (ISSN 1086-4741), Volume 26, Issue 265, is published monthly by United Spinal Association. shock was that, after he had been laid off, his Amazon eye there to record it? Copyright 2015, all rights reserved. Reproduction without permission of any material contained herein is strictly old position opened back up and he didn’t Maybe the corporate octopus was too prohibited. We welcome comments; even get an interview.” busy expanding and growing new tentacles we reserve the right to edit submissions. Jeff had been promised that he would — everything but a heart. Periodicals postage paid at Flushing, NY and additional mailing offices. be first in line for the position when it re- — Tim Gilmer www.newmobility.com

4 NEW MOBILITY CONTRIBUTORS life beyond wheels OCTOBER 2015

Ashley Lyn Olson, paralyzed at 14, created wheelchairtraveling. CONTRIBUTING com in 2006 with the mission of empowering people with lim- EDITORS ited mobility, their friends and loved ones to access the world MICHAEL COLLINS of adventure and leisure travel. With over 8,000 resources and MIKE ERVIN hundreds of writers worldwide, it is the first online community ROXANNE FURLONG for accessible travel. Ashley is an access advocate, as well as an RICHARD HOLICKY accomplished author, public speaker, photographer, videogra- PRISCILLA MALTBIE pher, website developer and entrepreneur. She has a passion ALLEN RUCKER for life, people, and places. “It is the journey,” she says, “not the destination,” that matters. ROBERT SAMUELS ERIC STAMPFLI ELLEN STOHL Ben Mattlin is a New York Times op-ed contributor, an NPR com- BOB VOGEL mentator and author of Miracle Boy Grows Up: How the Disability LOREN WORTHINGTON Rights Revolution Saved My Sanity. His writing has appeared in such well-known and diverse publications as Newsweek, USA Today, Los Angeles Times, WashingtonPost.com, and the children’s television program, “Biker Mice from Mars.” Born in New COMMUNITY PARTNERS York City in 1962 with spinal muscular atrophy, a congenital muscle weakness, Mattlin graduated cum laude from Harvard KIM ANDERSON University in 1984. He lives in Los Angeles with his wife, their two CHRISTIAAN “OTTER” BAILEY daughters, a cat and a turtle. MARTY BALL FINN BULLERS TIFFINY CARLSON LAWRENCE CARTER-LONG A promotional copywriter for the home shopping network RORY COOPER QVC, and freelance journalist on the side, Kate Matelan is JASON DASILVA known for her smarts, style, candid SCI musings, and Welsh terror — make that terrier — named Thor. You’ll spy Kate DEBORAH DAVIS and her boyfriend rolling with/walking their pup, cooking in TOBIAS FORREST the kitchen, or hanging with friends and family. A Bucknell JENNIFER FRENCH University grad, Kate says she will always be proud of her ALLISON CAMERON GRAY orange and blue. Follow her on Twitter (@katematelan), and MINNA HONG for kicks, her dog on Instagram (@thorweenie). MARK JOHNSON GARY KARP NANCY BECKER KENNEDY After becoming quadriplegic in 2002, Lilly Longshore contin- BRITTANY MARTIN ued to work as an environmental engineer for the next decade. LINDA MASTANDREA When she and her son started losing their vision to an incurable LYNN MURRAY retina disease, she re-directed her life to advocate for those ASHLEY LYN OLSON with physical disabilities and vision impairments. Lilly also is an SCOTT RAINS inspirational speaker and serves on two governor’s committees TEAL SHERER for disability issues. A lifelong adventurer, she has journeyed by MITCH TEPPER ox cart in Paraguay and canoed the Amazon in Brazil. Today, she REVECA TORRES continues adventuring and writes wheelchair accessible travel ANTHONY TUSLER articles. Read more about her at www.lillylongshore.com. KARY WRIGHT

OCTOBER 2015 5 Outdoor Recreation: Safe Thrills

LETTERS life beyond wheels Parasailing and bungee Video Bloggers WHILL Wheelchair The Kenyan Experience jumping are very safe intro

activities to adventure sports. newmobility.com AUG 2015 $4

To Velcro or Not to Velcro cally. A high voltage/ahr LiFePO4 unit would ten by a very talented man I’ve had the plea- The author mentioned that paraglid- have saved about 40 pounds of weight, sure of meeting. Thank you, Kary, for sharing ers Velcro their ankles to the instructor stretched the range to 20-30 miles and, with it. Nakoda was indeed a terrific friend. [“Adaptive Outdoor Adventure Sports,” high power brushless motors, could achieve Norm Rourke Aug. 2015]. That’s not the case in the significantly higher speeds. Via newmobility.com photo. I’ve paraglided in two countries Its off-road credentials don’t look too and they didn’t Velcro my ankles to the impressive, either. The center of gravity Editor: Mark Boatman’s August story — instructor as he wouldn’t be able to walk seems to be too far forward of the rear “Kennedy Nganga: Painting So Others Can during take-off. Readers should also know wheels, so the front casters will tend to dig Live” — received tremendous feedback novelty activities, including parasailing in on soft ground. The trick omni-directional online. Here is a small sampling: and bungee jumping, are very safe intro casters will likely get clogged with debris on activities to adventure sports. all but the driest tracks. … Saving Angel Gene Rodgers As for the drive wheels themselves, This man is an angel saving children and Via newmobility.com they’re skinny and look like the usual hard, families in Africa. Please read his story and high-sidewall power chair wheels we all support him! Last year I sent him $50 and it Author: You make a good point about the know and hate. Again, these will bog down went to an older disabled lady in the form paragliding passenger in the photo — he on sand or soft ground. of a goat, two chickens and staples. When did not use Velcro on his ankles. I imagine it The WHILL incorporates some good Kennedy put up the photos of “Mama depends on the type of harness and the fly- ideas, but its reliance on obsolete tech, its Sidi,” others asked why she doesn’t have a ing conditions. My point is those of us with poor performance and range, and its “form wheelchair, so they donated and she got a spinal cord injuries need to protect our legs over function” design means that it’s really wheelchair. It truly was the best $50 I’ve ever because so many of us have osteoporosis only appealing to those who place style spent! Kennedy and his family have adopted within 10 years after injury and our leg bones above everything else. two girls with albinism and in Africa break easily. — Bob Vogel James Mitchell unspeakable things are done to children Via newmobility.com with albinism. I sent a small amount to help WHILL Power them go to school. This Christmas I plan to I had the great fortune of coming into con- WHILL Potential send more and hope to buy one of his beau- tact with WHILL and its designers in their It looks amazing. I use an Invacare Pronto tiful art pieces. Please support Kennedy. You early days [“WHILL It or Whon’t It,” August M-61 and might miss the ability to raise my will enjoy his loving friendship. 2015]. It was fun to give feedback from my seat 6 inches, but I live where there is rough Cheryl Hodges end-user’s perspective as a C5-6 quad and terrain and the ability to go through grass, have the designers actually listen and use the gravel and redwood would be great. Hope Brother’s Keeper information. From its beginnings to now and things don’t pop loose routinely. Just wish Kennedy Nganga exemplifies the teaching “I into the future, WHILL, I trust, will continue it had FDA approval so I could get a tax am my brother’s keeper.” He is such a genu- expanding its footprint in the marketplace. deduction. $10K is a lot of money! I like the inely loving and compassionate soul. May Molly Saccho Hale looks, and that the seat moves forward so God continue to grace his life and mission. Via newmobility.com you can sit more easily at the table. Linda Jenkins Diane Mettam Form Over Function Via newmobility.com Shining Star in Global Community The WHILL looks nice, but is a real missed Fine story about an exceptionally good man opportunity — 5.5 mph and a 10.6-mile Nakoda and Kary Wright in our global disability community. Great range is lame. For all its “futuristic” packag- As an animal lover (we have rescued/adopt- piece, Mark Boatman. And thanks to NM for ing, it still uses lead batteries, like any other ed cats), this is a moving, touching story covering Kennedy Nganga. power chair, and this limits its utility drasti- [Outside Tracks: “Nakoda,” Aug. 2015] writ- Janine Bertram

6 NEW MOBILITY AllTrack Pub 05 Juillet 2015-B.indd 1 2015-08-20 5:00 PM NEWS By Mark J. Boatman

Inclusive Home Design Act of the National Council on Independent “This is another shortsighted attempt Introduced Living’s housing committee, and prima- at policy change that entirely ignores the Eleanor Smith’s 30-plus years of advocacy ry organizer for this effort, at BPeters@ complicated needs of wheelchair users for Visitability in new homes is paying off as independencefirst.org. and others who use mobility aids to get Rep. Jan Schakowsky (D-Ill.) introduced the around and live a fully-functional life,” Eleanor Smith Inclusive Home Design Act Hands Off Our Legs! — Amputees says Tim Gilmer, editor of New Mobility. on July 28. Per Visitability guidelines, the bill Protest New Medicare Rule Gilmer, a T11 para whose left leg was would require every new home financed On August 26, a rally protesting proposed amputated below the knee due to com- or funded by the federal government to Medicare cuts to the standard of care for plications from SCI and peripheral artery include a zero-step entrance, wheelchair 2 million amputees took place outside disease, relies on his prosthetic leg to accessible doorways and an accessible the offices of the Department of Health make independent transfers possible. bathroom on the home’s main level. and Human Services in Washington, D.C. “The proposed change discriminates Smith has successfully pushed for the Hundreds of amputees and other con- against those who need mobility aids in implementation of Visitability in build- cerned individuals from across the United addition to prosthetic limbs and is con- ing codes across the country, including States participated. trary to the spirit of the ADA.” Atlanta, Austin (Texas), Bolingbrook, Ill., and Pima County, Ariz., which includes People in the News: Fashionista Jillian Mercado Signs with IMG Tucson. According to Smith, building access into new homes costs under $200. “These cities disproved the statements illian Mercado, the New York City blogger, is among a growing num- that had been made about how expen- model with muscular dystrophy ber of models with disabilities being sive and difficult it would be to create Jwho burst onto the international embraced by the fashion industry. She zero-step entrances,” she says. fashion scene after a Diesel advertis- joins models like Madeline Stuart, who Not only an important issue for wheeling campaign in has Down syndrome, chair users, Visitability is also vital for a 2014, has inked an and Viktoria Modesta, growing population that wants to age exclusive contract who uses a bionic in place. The American Public Health with the prestigious limb. They are chal- Association calls the lack of Visitability modeling agency, lenging the standard in homes a health issue. This legislation IMG Models. conventions of beauty would go a long way in improving access. “I goddamn that have reigned over “It doesn’t cover every new house, but it love my body, a the fashion world for does bump up the number of houses that lot,” she said in a decades. would be required to have access by a recent interview With IMG produc- great deal,” says Smith. with Vivala. “I love it ing New York’s Fashion There are no federal accessibility so much I eat very Week in September, requirements that cover privately-owned healthy now … I try chances are good that houses. Smith says that needs to change. to go to the gym like twice a week. I Mercado could become a mainstay on “It’s high priority because it’s about wear whatever I want to wear. I am the runway. Ivan Bart, the president where people live … the last piece of the obsessed with makeup. I have a very, of IMG Models, is excited to represent built environment that hasn’t yet been very awesome life now and I am very Mercado. “Look at those pearly whites. dramatically changed,” she says. “The happy with everything that’s happen- Look how she wears makeup. She’s one thing that still goes up without basic ing because I worked so hard to get Latina, she’s fierce, and nothing gets accessibility is housing.” where I am.” her down. It’s a great opportunity for Those willing to help advance this act Mercado, a 28-year-old fashion us,” he says. should contact Brian Peters, chairman

8 NEW MOBILITY Advocates and industry experts say proposed changes to Medicare’s reimbursement for lower limb prosthetic care would create unreasonable, clinically unjustified hurdles to amputees receiving care that is now routinely provided. The proposed changes not only would have a devastating impact on Medicare beneficiaries, but on all of the 2 million amputees in the U.S., since commercial health insurance payers tend to follow the lead of Medicare on such matters. For weeks now, a groundswell of opposition has been growing against the proposed Medicare rule that would nega- tively impact America’s amputees. Approximately 110,000 amputees had signed a petition to rescind the proposal by early September. For more information, including how to get involved, go to www.saveprosthetics.org. — Josie Byzek AbleThrive.com to Curate Disability Content After over a year of planning, prototyping, and relationship building with members of the disability community all over the world, AbleThrive.com has released its first website. AbleThrive NUMBERis the brainchild OF BRONX ofRESIDENTS Brittany WHO (Martin) HAVE Déjean, co-founder of the popularONE SCI OR video-sharingMORE DISABILITIES: site, Spinalpedia.com. “The more time I spent online looking for disability resources and the more people I talked to, the more I realized it was getting increasingly difficult to find what you need or to get attention for what you posted or a program you created,” she says. “I started talking to both sides of the equation and saw a gap.” Déjean created the free platform to provide a hub that facili- tates sharing the growing amount of high-quality disability- related blogs, articles, videos and programs on the Internet with the ultimate goal of helping people with disabilities and their families live their lives to the fullest. “So much of the content from amazing people, organizations and hospitals all over the world is buried on the Internet,” she says. “Now I’m working with those creating content and making it accessible in one go-to platform.” AbleThrive features content from 21 organizations, 10 blogs and one hospital representing four countries. The initial focus is on parenting and paralysis, but Déjean has plans to expand. AbleThrive will cover a new topic each month in this launch phase, growing a base of quality information that is catego- rized to maximize searching efficiency. The goal is two-fold — make life-changing information about living well with a disability accessible to anyone with an Internet connection, and give people, organizations and hospitals without marketing resources a means to share their quality content with more of their target beneficiaries. “I found we are all working so hard in our own corners of the world trying to solve the same problems,” she says. “A lot of the solutions are out there, we just don’t know where to find them. By launching AbleThrive, we’re opening the doors of collaboration to the global disability community so we can accelerate the path to adaptation and acceptance,” says Déjean, who was introduced to the world of SCI when her father, Paul, was paralyzed. —Ian Ruder

OCTOBER 2015 9 SCI LIFE

By Tiffiny Carlson

A Good Kind of Shock A quad-owned company, QuadshoX, has “I began to carve created a rear-wheel suspension system for tilt-in-space manual chairs, and it may out a new life and change your mind about the possibility of a silky smooth ride. John Morris, from Fort a new ‘normal’ Collins, Colo., knows a thing or two about the for myself.” importance of a smooth ride. A C5 quad who was injured several years ago at the age of 18 while snowboarding, Morris has always hated being subjected to a bumpy ride. So his company came up with the QX-1, a retrofit- suspension kit to be made for manual wheel- Mommy Blogger On Wheels chair users. “The idea has gone from a dream to reality,” says Morris, who collaborated “No matter what your abili- once she moved out of her par- with students at Colorado State University to ties or limitations are, the best ents’ house and started school. design the kit in 2014. thing you can do for your “I began to carve out a new life The device works by redirecting the force children is to love them uncon- and a new ‘normal’ for myself. I of a crack or bump from the wheel and frame ditionally,” says Ali Gibson, 42, studied psychology at university, to the shock. The kit can be installed on any a paralyzed mom who blogs graduating with a first class hon- pre-existing wheelchair. QuadshoX ran a about her life. ors degree in 2006.” Kickstarter campaign earlier this year for fund- Injured in 1996 when she was And her happiness levels ing their QX-1, which will be launched this fall. 23, Gibson is a T12 complete really surged when she rekindled Learn more: www.quadshox.com paraplegic. “I was in a park while a romance with an ex-boyfriend, on holiday in Tenerife [largest of James, several years post-injury. the Canary Islands, Spain] and a The two fell in love all over again, severe wind storm brought a tree got married in 2007, and a year down. It struck me from behind. later had a baby, Sarah, who is I heard the ‘crack’ of the tree the inspiration for Ali’s blog — breaking and I was knocked to Parents in Wheelchairs — where the floor. My spinal cord was sev- she shares her experiences, tips ered in three places after the fall and product advice on parenting and I was paralyzed instantly.” as a paraplegic. A lifetime resident of the She also started a Facebook Midlands, U.K., initially Gibson group called Parents in wasn’t hopeful post-injury. “The Wheelchairs that helps parents Traveling SCI Photo Exhibit Now Online transition was much, much of all different SCI levels learn If you love photography, then you’ll love harder than I expected, and the how to parent as independently Reinventing the Wheel, a collaboration reality of my spinal cord injury hit as possible. “We have 276 mem- between BACKBONES and the National me hard,” she says. “I had no peer bers from all over the world, but Museum of Health and Medicine, Chicago. support and many of my friends mainly the United Kingdom and After being shown in Chicago, New York, felt awkward around me, so my the United States. It’s amazing!” Portland, Ore., and Vancouver, Wash., the social life dwindled.” Go to www.parentsinwheel photo gallery profiling the 21 people with SCI Her entire outlook changed chairs.com can now be viewed online. View the gallery: www.vmuseum.com/rtw.

10 NEW MOBILITY EAT WELL, LIVE WELL

Symptoms of Insufficient Bile Secretion: Don’t Neglect Your Gallbladder • Gas and bloating, especially from onions, People rarely give their gallbladder much cabbage, radishes and cucumbers thought until they have a problem. Those • Fatty/greasy foods cause nausea or of us with SCI should be paying attention to headaches this little pear-shaped organ long before that • Constipation because we have an increased prevalence • Chronic bad breath or bad taste in mouth of gallstones (cholelithiasis). Studies indicate • Excess body odor our risk of developing gallstones is three to By Joanne Smith six times higher than nondisabled people Studies indicate that diets low in fiber and and Kylie James belonging to similar demographic groups. high in sugar and food allergens are associ- Cholelithiasis is so significant that it is now ated with increased risks of developing gall- considered a secondary complication of SCI. stones. Be sure to reduce your sugar intake, Gallstones range in size from a speck of eliminate all known food allergens and boost sand to a pea. The gallbladder’s role is to store your diet with fruits, vegetables, whole grains and secrete one liter of bile produced by your and legumes. Dandelion tea helps increase liver each day. Bile is a critically important bile secretion and the solubility of bile, thus digestive secretion that plays a multitude of decreasing risk of gallstones. Lecithin, a natu- roles in your digestion and health. ral fatty substance found in high concentra- Bile breaks down fat globules into tions in eggs, beef liver and peanuts, has also smaller fat droplets, so they can be properly been shown to help reduce gallstone devel- digested. Fat molecules carry vitamins D, E, opment. Below is a lecithin-rich recipe to help K and A throughout your body. These four keep your gallbladder healthy and happy. fat-soluble vitamins, commonly deficient in people with SCI, play vital roles in the pre- Joanne Smith and Kylie James are co- vention and management of osteoporosis, authors of the book Eat Well Live Well with SCI cardiovascular disease and pressure sores. and Other Neurological Conditions. For more Sufficient amounts of bile are essential for information on nutrition for neurological inju- the proper digestion of fats, absorption of ries, go to www.eatwelllivewellwithsci.com. essential nutrients and prevention of serious secondary health complications. Bile also helps neutralize acidic food and damage it Protein Pancakes causes, keeps your small intestines free of ¼ head cauliflower, steamed and mashed (or use broccoli or spinach) microorganisms, reduces bloating, helps 2 eggs stimulate intestinal peristalsis and helps pre- 1 tbsp. whole grain flour vent constipation. 2 tbsp. red onion, chopped Gallstones can block the bile duct through 1tbsp. Parmesan cheese which bile is released into the intestines. The 1 tbsp. coconut oil (or butter) gallbladder can then become inflamed and Sea salt and ground pepper to taste unable to perform its vital role. In extreme cases, surgery is required to remove the Steam cauliflower in microwave and gently mash. Add eggs. Sprinkle in flour gallbladder, which drastically decreases the and parmesan cheese. Heat coconut oil, fry mash in pancake shape and amount of bile reaching the small intestine. enjoy. Cook and store extra pancakes in fridge for microwave meal later! Even tiny gallstones can significantly impair your digestive system and overall health.

10 NEW MOBILITY OCTOBER 2015 11 EVERYDAY ADVOCACY

Theater Seating Denied

By Michael Collins

Q. I like movies, but a recent experience at since this all took place in front of other as long as you provided full details along a theater in New Jersey has left me upset. moviegoers who were waiting to buy tickets. with your complaint. As a paraplegic and wheelchair user, I enjoy When I got home I used the template on the If you prefer to have an attorney the mandated seating for wheelchair users theater chain’s corporate website to share advise or represent you, it may not be in entertainment venues and have spent my complaint about what happened to me. necessary to pay for that service. The hundreds of dollars to watch movies on the It has now been well over a month with no National Disability Rights Network is big screen. I can transfer to a fixed seat, but response. What else can I do? Is there anyone the parent agency for a network of prefer to remain seated in my wheelchair. else who I should be getting involved? nonprofit organizations based in every The release of the latest Jurassic Park — No Show in N.J. state; Disability Rights New Jersey cov- movie was shaping up to be exciting, and ers the Garden State. NDRN’s mission, as being able to attend the first showing on he Americans with Disabilities Act stated on their website, is to advise and the opening day along with other fans addresses the situation you faced, assist persons with disabilities, family promised to make it even better. My prob- Tand the Department of Justice has members, attorneys and guardians in lems started when I tried to buy a ticket prepared guidance on ticket sales and pri- obtaining and protecting the rights of orities. Tickets for accessible seating must online — I found that tickets for accessible individuals with disabilities. It could be be available online if other tickets are sold seating were only available at the theater. worth your time to contact them. When I arrived, a sign stated that tickets in that manner. Theaters and similar plac- It is also possible to file a complaint were sold out. From past visits, I know that es of public accommodation are allowed with the New Jersey Division on Civil there are about six vacant spaces in scat- to sell accessible seating to the general Rights for a violation of the state’s anti- tered locations throughout that theater public if people with disabilities do not discrimination statute. Most states have where wheelchairs can be parked; I doubted request them, but that does not appear similar laws. In your situation, the com- that six other people using wheelchairs had to be the case in this instance. The ADA plaint would be heard by an administra- arrived before me. I asked if someone could also requires modifications of policies and tive law judge who could award damages check to see if there were any empty spaces procedures if necessary to accommodate or assess a statutory penalty against the left, and the usher said several of those people with disabilities, so a violation of respondent, and may also award attor- spaces were still vacant. the law probably occurred when staff ney’s fees if you prevail. At that point I figured it was a simple failed to override the computer to allow matter of paying for my ticket and heading you to attend the movie. Those managers Good luck, and thank you for helping inside. Unfortunately, the computerized tick- should have had training that made them to ensure that future visitors to that the- eting system had registered that the theater aware of how to meet your needs. ater avoid similar problems. was full and would not allow a ticket to be You have a couple of strategies you issued. The assistant manager in charge of can follow in this situation. You could Resources ticketing said she could not override the com- request a meeting with the theater’s • National Disability Rights Network, puter, and her manager did not know how to general manager or its ADA coordinator www.ndrn.org do that either. I offered to pay cash so I could at the national level. If that is unsatisfac- • Disability Rights New Jersey, www.drnj.org enter without a ticket in hand, but both man- tory, you may file a complaint with the • ADA Info, www.ada.gov agers said it was against company policy. Department of Justice. You would not • New Jersey Law Against Discrimination, I finally left, disgusted and embarrassed, need to have an attorney represent you www.nj.gov/oag/dcr/law.html

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ince childhood, hot air balloons almost as difficult as getting safely from have conjured up images of Oz — Munchkinland to Oz. While researching S representing the only feasible way the possibilities I grew all too familiar of getting to a place I longed to go. Even with the mantra from most balloon com- if I did live in Kansas, I doubt a twister panies: “Our flight is not recommended could carry me over the rainbow, but a for individuals with certain health and hot air balloon held promise. That is how mobility problems. Passengers must the wizard got there, isn’t it? stand during the entire flight and need Unfortunately for people with dis- some agility to get in and out of the bal- abilities like me, an incomplete quad- loon basket. The baskets are not designed riplegic of 32 years, traversing the skies in by the manufacturer to accommodate one of the world’s oldest ways to fly is still wheelchairs or other similar aid devices.” Andrea Rivera living her dream of flying.

OCTOBER 2015 15 I found one company that offered Sacramento and try it,” he says. After a customized bean-bag style seating for successful jump, the group sat around those who cannot stand, while another a fire reliving the deed and quickly de- featured a bench seat that can be put cided they should do this in San Diego. into any of their baskets. However, “It was odd,” recalls Murphy. “Bungee like most companies, their baskets do jumping was exciting, but ballooning not have any doors. The crew can help is what got me hooked. I felt so free — pre-board people with disabilities, but hovering amongst the clouds. I felt like I pre-boarding requires the individual could do anything. It was amazing!” to lie on the ground and roll into a Murphy came home and imme- tipped basket, then onto the bench seat diately hooked up with A Beautiful equipped with special straps that can Morning Balloon Company in Del Mar, help the rider sit upright. Calif., which is no longer in business. For some adventurers being lifted He learned the skills he needed to up-and-over the balloon basket into become a balloon pilot, put in the flight a custom beanbag chair or rolling on time and got his commercial license by the ground to gain access would not be 1992. During that time, he continued feasible. For me it seemed doable, but I to work as a hardware engineer for was still unsure if I wanted to test my Hewlett Packard. As an active partner fortitude just to fly. Part of me wanted in HP’s community outreach efforts, he to just click my wheels together three would volunteer setting up computers times and find myself sailing over the and printers at Camp Reach for the Sky, rainbow. I knew that if I was going to a weeklong summer program for kids glide across the great blue with ease, with cancer. One summer he realized I needed to find someone great and there was enough room for him to bring powerful. Luckily I did. his balloon to the camp. The next year, he offered campers tethered rides in the morning and before sunset each day. He The Wizard says, smiling, “The balloon was a huge of Balloons success and the kids loved it.” San Diego, Calif., resident Pat Murphy Murphy’s smile quickly fades when never realized the impact a balloon ride he starts to discuss how he felt when kids more than 20 years ago would have on who use wheelchairs had no way to enjoy After lots of calling around, Ellen Stohl found Magical Adventure Balloon Rides, which does his life. “After reading about the original the ride. “It was difficult to see kids sit on everything it can to help wheelchair users take bungee-jumping brothers, the Kock- the sidelines because my balloon basket to the sky. elmans, diving from a hot air balloon, couldn’t accommodate them. I felt like some work buddies and I decided to it was my fault. Even if the child wasn’t head north to Bungee Adventures in a wheelchair user but was too weak because of chemo, or whatever was going on at the time, they just couldn’t get into the basket. That’s when I knew I had to All-Weather Ballooning do something different.” After not being able to take flight on paying guest. If the weather permits As luck would have it, Murphy my second attempt with Reach for the the flight, you’ll go up along with the discovered the solution at the 1993 Tem- ecula Valley Balloon and Wine Festival Stars, I was very frustrated. Kim Lynch rest of the passengers, regardless of openly admitted that nondisabled in the form of the Serena’s Song balloon your disability. Denni Barrett, owner/ team. Serena’s Song was the first wheel- passengers could go up in those condi- operator had this to say, “Our company, chair accessible balloon created in the tions, but because I use a wheelchair, Magical Adventure Balloon Rides, also United States. It was designed and built she felt the landing would be too provides for disabled passengers, not by Gary Waldman for his daughter, Ser- rough. I appreciate Kim’s cautious- just guests in wheelchairs. We have the ena, who has cerebral palsy and other ness, but feel like she underestimated largest and newest fleet of balloons in serious health issues. Waldman was my abilities. My disgruntlement led to inspired to create the accessible basket Southern California. Our baskets have research where I discovered Magical after he took his non-verbal, seemingly Adventure Balloon Rides [see re- doors in them to allow passengers to emotionless daughter, then 2, for a bal- sources]. This company appears to be roll in, walk on and walk off the experi- loon flight. “I had never seen Serena so able to accommodate all abilities and ence. These amenities are incidental to excited and beaming,” Waldman said. will most likely treat you like any other our business.” “Her squeals of delight were amazing.” Inspired by what Waldman had 16 NEW MOBILITY accomplished, Murphy set out to adapt his own balloon basket. His background as an engineer and his access to the HP product test lab helped him work out the design flaws and test his adaptations. But the FAA is strict, and meeting its standards was expensive and time- consuming. It took seven years, but with the help of his wife, Carol, his son, Riley, and other supportive members of the ballooning community, he was able to Unlike these baskets used by Magical Adventure Balloon Rides, most hot air balloon baskets do get the basket approved and ready for not have gates and passengers are expected to clamber over the sides with little or no assistance. flight. “It was a huge undertaking and there was no way I could do it myself. I may have been the catalyst, but without the support of others, my dream would have been grounded,” he says. With the adapted basket complete, Murphy’s dream took flight. He secured Eliminate leg bag hassles the insurance he needed, filed the pa- with the touch of a button. perwork and eventually founded Reach for the Stars, a nonprofit organization dedicated to bringing the ballooning experience to campers with disabilities The only leg bag that empties itself ... and others with limitations or mobility and tells you when it’s time. issues. Pat reflects on his motivation: “When you think of children with dis- • Unique integrated level sensor and pump abilities especially, and the limitations • More control and independence already placed on them in their lives, for • No more leaks or backﬂ ows them to be able to do something they • Reduces UTI risk by encouraging proper hydration1,2 never thought they’d be able to do … • Simple to use and discreet what’s better than I can do it, should do it, and am doing it?” NEW! For self payers A New Era and Medicare Today, RFTS ballooning continues to covered* sail, providing rides to people of all abilities in addition to visiting schools, To learn more or ﬁ nd a dealer, camps, and festivals. In December 2014, visit www.MelioLegBag.com Murphy, now in his early 60s, had to pass the torch to Kim and David Lynch *Subject to co-pay and deductable requirements. due to the heavy workload at his job. He 1. National Institute for Health and Clinical Excellence (2012) Prevention and control of healthcare-associated infections in primary and community care. 2. Hooton, T.M. et al. (2010) Diagnosis, Prevention, and Treatment of Catheter-Associated Urinary Tract Infection in tears up a bit as he shares his decision to Adults: 2009 International Clinical Practice Guidelines from the Infectious Diseases Society of America Clinical hand over the pilot position. “It’s really Infectious Diseases 50 625 – 663. hard not to be as hands-on as I was, but I’m the only pilot in my family. The Lynches are a family of four and they all have a license to fly hot air balloons. They can reach out to so many more camps, kids and people with disabilities than I ever could.” Kim and her family are thrilled to be next in command. “I think ballooning helps people, especially those who’ve experienced difficulties realize they can do Find a Dealer at www.MelioLegBag.com more; that they aren’t tied to the ground. Melio is a trademark of Albert Medical Systems ©2014 Albert Medical Devices E1012 Rev B 07/15 Ballooning helps them let it go, release and experience a new freedom from

OCTOBER 2015 17 and a child in a wheelchair reaching for I watch Joseph Chan’s face light up as the stars on the other. This balloon has the RFTS signature balloon begins to fill given over 15,000 children and adults and take shape. The bright colors come tethered rides or flights. Robbie, their to life as the morning sun begins to ap- special-shaped balloon, is a 3-D model of pear. We are at a Joni and Friends family a child seated in a wheelchair, grabbing a retreat, and Joseph has already signed star in his outreached hand. Joy fills the up for a tethered flight. “It’s so fun to go child’s face and the initials “R4TS” are up there,” Joseph beams. “The view is emblazoned on the side of his wheel- beautiful and my family gets to come, chair to encourage each of us to always too.” Joseph has Down syndrome and reach for the stars regardless of our life is a nine-year veteran of the week-long situation. This balloon is available for camp. He was scared to fly his first year, flights but is often only flown at festivals but now looks forward to the flight. He or used in displays due to the cost of happily shares his enthusiasm. “I love operating it. the balloon, and I love the camp! That’s Unfortunately, cost is always an issue. why I keep coming back.” Operating a hot air balloon is not cheap. Dawni Hill, another attendee, uses RFTS would love to provide its services a wheelchair for mobility and has no Photo by Dorothy E. Harris for free, but to do so it would need a Reach for the Stars’ specially-designed balloon problem getting the chair inside the bal- of a kid using a wheelchair has become an benefactor to cover propane, repairs, loon’s custom basket. Up and away she iconic feature at local balloon festivals. transportation, food and the myriad of goes. When she lands, her face dons a other expenses it takes to get a balloon huge grin, “It was so much fun hovering some restraints they may feel.” in the air. The company’s primary goal above the earth.” RFTS has two accessible balloon is to garner enough donations to visit Next, Dee and George Heath share baskets and a variety of balloons, includ- every camp for kids with disabilities in a ride with their granddaughter. Dee ing a traditional shape with the custom the western U.S. and attend as many has cerebral palsy and uses a motorized RFTS balloon that displays a standing festivals as possible to raise awareness chair. RFTS has the smaller basket today, child reaching for the stars on one side and, literally, lift spirits. so with the help of George, Dee transfers

18 NEW MOBILITY The engineering is marvelous,” he says. Resources “Dee was comfortable and could see everything, even sitting down.” Both • Blastvalve; www.blastvalve.com/ agree they’d love to try an un-tethered Balloon_Rides/Special_Needs/. This is flight someday. the ballooning search engine’s direc- It’s another dawn and it’s been a long tory of accessible balloon flights. journey. Ballooning is a fair-weather • Eyes to the Skies Festival/Serena’s adventure and this is my third attempt. Song; eyestotheskies.org/activities/ A nasty thunderstorm canceled the first hot-air-balloons flight and unsafe landing conditions put • Magical Adventure Balloon Rides, the kibosh on my second. I protested 866/365-6987; www.hotairfun.com. that time, adamantly letting Kim know (See sidebar, page 16) I could handle a rough landing, but she • Reach for the Stars, 951/538-7368; is cautious and quotes an old balloon- reach4thestars.org. Details on balloons ing adage: “I’d rather be on the ground and camps, calendar of events and wishing I were up there instead of being much more. up there wishing I were on the ground.” • Sky’s the Limit Ballooning Adven- Today conditions cooperate, and I tures, 760/602-0295; www.sandi- actually float, not fly. I sit in the basket Over the years, Reach for the Stars has provided perched above the earth feeling as if I egoballoonrides.com. Accessibility 15,000 rides to people with disabilities. am motionless while the earth revolves is determined on an individual basis. slowly below me in a tapestry woven Contact Renee Lawson personally: from her chair to a seat in the basket. from vineyards, orchards and farms. It [email protected]. In a few moments the burner roars and is magnificent and definitely worth the • Sunrise Balloons, 800/548-9912; the balloon ascends. Dee peeks out of wait. I am sailing across the sky, liberated www.sunriseballoons.com. Custom- the custom window and waves to those from earthbound restraints. I am over- ized bean-bag style seating for those of us below. George is impressed by the come with a sense of freedom that can who cannot stand. basket’s unique design. “It’s incredible. only be experienced by defying gravity.

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hirt, shoes — and wait — leg bag required? Sure, as my day — think pressure sores, getting soiled, what I can put wheelchair users we may have a couple extra accessories on and off myself, what kind of terrain I’ll be pushing through. Stagging along and a couple more obstacles to figure out, Putting some of these dilemmas to rest starts with a solid but that doesn’t automatically make fashionable clothing on foundation — having the options and the know-how on putting wheels unattainable. them together. Using a wheelchair doesn’t mean you need to Here’s my side of things. I rock a bit of a quad belly, pee out wear baggy, fashion-less clothes. You just need to know where of my belly button, and confidently own my 20-ish degrees of to find better options and how to make them work for you. spinal curvature. Gimpy hands make buttons a chore and man- You can shop for clothes that have been designed especially ual pushing has taught me to beware of white pants. If any of for wheelchair users, universally designed clothes designed that sounds familiar or is relatable, then trust me, you can find with a wider range of needs in mind, or simply buy right off clothing out there that fits your needs and looks up-to-date. the rack and wear it or tailor it to your desire. Mix, match, do Fashion is a big part of my world. Choosing what I’m wear- whatever, but always remember it’s about you. ing starts my day on the right note. I’m constantly running through my typical checklist: weather, the temperature at work ADAPTIVE CLOTHING (always cold), how I’m feeling (bloated, sassy, sexy), do I need I dug into the adaptive clothing scene with a raised eyebrow to have shaved legs to wear it. Adding onto those routine con- or two. My only true piece of wheelchair-adapted fashion is a siderations is the effect that my clothing has on my body and poncho-like cape from Adaptations by Adrian for those rainy

OCTOBER 2015 21 TOP 4 FASHION MYTHS

Adaptive clothes aren’t fashionable. Yes, there are many adapted lines out there that don’t have an ounce of style. I believe this wholeheartedly. However, my skeptic side was surprised by the likes of IZ and ABL Denim. They carry clothes that my 20-something self would wear. And I have a high style standard.

I can’t get dressed up. I only can live in soft, comfortable loungewear. Fabrics today have changed the fashion world. And the athletic- inspired trends are finding their way into daytime clothing and even workwear — there’s now stretch in everything from jeans to jackets. Believe me, you can still protect your skin while looking put-together.

I can’t dress myself, so I want what’s easiest for someone to help me put on and off. Yes, making it easy is a must, but don’t let that word pigeonhole you into wearing items that automatically put their on-and-off capabili- ties or size before fashion. You can have both in one garment. “People have been telling me their attendants are reaching for my adapted clothing. Fashion and function — it’s a win-win!” says Izzy Camilleri, designer and founder of IZ.

I can’t wear what she/he is wearing. You might not be able to wear exactly what someone else has on, but you can find a way to make something equivalent work. And if you don’t see it out there, ask someone to make it. So many designers jump at the opportunity and welcome the idea.

days. It works well and I wholeheartedly recommend it, but I wish I could get the same coverage from a high- end rainslicker. So what’s the state of the adapted fashion union? Companies are getting creative and getting out there: mastering high-backed pants, full-

length or thigh side zippers, cropped-back jackets, Photo courtesy of ABL Denim no rivets or hard seaming, hook-and-bar clasps Think skinny shorts aren’t practical or possible for you? Think again. These instead of buttons — the list goes on. They’re even do- are designed by ABL Denim. ing custom add-ons to make the piece perfect for you. Now more than ever, designers are getting in tune with their clientele’s needs, researching what works for challenges, everything from organ settling to pressure sores. people with disabilities, and taking that into consid- When you see someone in a chair who’s dressed, you don’t eration when designing and choosing fabrics to hold always know what it took to get them dressed or the compro- up to unprecedented washing, pulling and tugging. mises they may have made,” says Camilleri. Take designer Izzy Camilleri’s IZ line (for- That perspective helped propel her into designing for chair merly IZ Adaptive), for example. A Cana- users, making on-trend fashions that don’t necessarily look dian journalist and wheelchair user was adapted. Through her new work she has met more people with referred to Camilleri — a designer disabilities and found new inspiration for designs, like a trench who has dressed some pretty big coat and another outerwear piece that unzips from the back, names — for custom work. Camilleri had never created anything adaptive, “I also like things with sleeves I can cuff or but that eye-opening experience blos- somed into a full-fledged line. push up out of the way, so stuff that has some “It all stems from what that journalist stretch is usually at the top of my list.” taught me. At the time, I didn’t know of the – Lauren, C6

22 NEW MOBILITY “As a higher level quad, I wear a chest strap clothing companies — being able to cater towards a bigger market while still giving people with disabilities more options. throughout the day to help with my stability. Jan Erickson founded Janska, a universally designed line This chest strap and my limited arm mobility mainly made out of softer fleece materials, after her friend Jean had several strokes and found dressing to be a challenge. After make it impossible to put on/take off a jacket attending her first trade show, Erickson was approached by in the wintertime. I have to resort to getting boutiques to carry her clothing. Realizing that there was a mar- ketable audience for her designs was her wow moment. Erick- someone else to help or (more commonly) go son and her team then did a blend of pieces, some more fitted without the jacket.” – David, C4-5 and others that had just enough extra room in the shoulder. “I wanted something to be really comfortable, stylish and easy to care for,” says Erickson. “The other thing that’s really making it easier for someone to help a high-level quad put important is the recognition of how important clothing is to on or off. Leg bags can be concealed and cleverly positioned each one of us. There’s an importance around how we get ready zippers also allow for easy dressing and easy access. Camilleri for the day — what does it look like when we get ready for the reflects, “I always say the clothes are secondary to what they day and do we feel good about how we’re looking and go out in deliver. They offer a sense of self, personality, dignity. They’re more than just an article of clothing.” While Camilleri mainly sells her wares online, designer Stephanie Alves is helping bring accessible fashions to a retailer near you. Thanks to her perseverance, she got her ABL Denim line sold through Walmart.com. Getting into a mainstream retailer wasn’t easy, but Alves hopes other retailers will get on board with the disability community and understand that this is just another category worth exploring. “Knowing that pants are the hardest, that’s where I decided to focus my business. I started asking people with MS or SCI about what their challenges were, how they need to be transferred,” Alves remarked. She understands that there can’t be any rubbing, styles need to ride higher in the back, and fabrics must be forgiving on the skin. One of her jean designs uses a softly finished yet “My most favorite recent discovery is tops that are made of silk in the front, but that have jersey sleeves and backs. They look presentable and still give me room to move and be comfortable over the course of a long day.” – Lauren, C6 more rigid denim, but uses a sweatshirt denim on the seat. In her words, “Jeans have to replicate the comfort of yoga pants as best as possible. They’re so easy to dress in — you just throw on a top and go.” One tip when considering purchasing adaptive clothing — get your measurements. Many of the online sites for these fashions give great rundowns of how their designs fit, especially since they’re already taking proportion and fit into consider- ation. You don’t necessarily need to go a size up for the ease of dressing, as many of them have accounted for enough room in a fitted garment. UNIVERSAL DESIGN

You might want to call some of these universally designed Cur8able courtesy of Photo clothing lines adapted, but they are intended to be worn by a lot of different groups. This may just be the sweet spot for Actor and singer Ali Stroker models an Ag Apparel jacket.

OCTOBER 2015 23 confidence versus when we didn’t get it right.” Ag Apparel is another interesting label to watch. I’ve crossed paths with Jordan Silver, its founder and designer, who has a fresh take on universal design and the foundation pieces of your wardrobe. Her late aunt had ALS and dressing took up to an hour and a half. Jordan wanted to shorten that amount of time without sacrificing style. Silver looks at a garment, deconstructs it and then recre- ates a similar form that is easy-to-wear for all types of wear- ers. Plus, she’ll make her fashions work for you with custom tailoring and made-to-measure men’s and women’s pieces. “I want everyone to have the option of choosing what to wear,” says Silver. “If it’s not for fashion, it’s for function — like dual zippers on pants. I see how many fashion needs I can solve in one pair of pants.” Like Alves, Silver wants more clothing out there in mass retail that people with disabilities can use: “Whether you’re shopping at Walmart or Neiman Marcus, you want to be able to go there and get what you need.” “I can’t stand wearing suit jackets – they never fit me quite right and I am just murder

on the sleeves.” – Lauren, C6 Photo courtesy of Alicia Searcy Janska designed this jacket to be as comfortable as it is stylish. OFF THE RACKS I’d like to think this is my area of expertise — shopping in a brand, or brands, that fit your fashion personality and life. store or online and then making those styles work for me. Liv- This may take buying a few sizes and arduously trying them on ing near a shopping mall mecca has given me plenty of practice and off at home. For some of us, that may be too much — I to- in navigating a clothing rack without trying it on. I look for tally get it. But for me, it was worth the trial and error. I know silhouettes, materials and colors that fit my style and mobility how J.Crew’s toothpick jeans run and know the size that fits while allowing for easy cath access (sorry, jumpsuits). How- me perfectly with no rubbing, no falling down and no excess ever, just because an item isn’t perfect, doesn’t mean it lands on material at my ankles. the “no” pile — more on that later. My best advice is to take the time and The same goes if you are buying online. Many places have energy (yours and your caregiver’s free shipping or will exchange for the right size. They want to if needed) to find your make it work for you. Plus, you can try it on in the comforts best size in of home and with an extra hand if needed. Like I mentioned earlier, take note of each company’s size charts before checking Get ideas on making jeans work for you (like a tie waist) or try ready-to-wear chair styles from ABL Denim, IZ and more. “Once I bought a few pairs of pants that are made for people sitting in wheelchairs. They ride high in the back and low in the front. Unfortunately, they were all pretty standard looks for clothing, so I moved back toward ‘mainstream’ clothing brands to get the look I wanted. It would be great if the wheelchair brands made some clothes that more closely approximate current fashion trends!” – David, C4-5

24 NEW MOBILITY out since your size at one retailer may differ at another. This IZ adapted trench coat is longer in front and has a back hemline Regarding the “no” pile, don’t just reject clothes that fit that stops at your seat. but might not have the bells and whistles you need. Do-it- yourself is a way to love your designer coat and make it work self-cath, purchased a magnetic closure shirt to accom- “What I wish for is a coat that looks great, modate your with sleeves that don’t drag my wheels when hand function, I push. I would really dig a properly-fitting or even tried on 15 jackets with trench coat.” – Lauren, C6 a friend just to find the right one. with your hand function. You can start small, like removing What they will a button from your jacket or pants and replacing it with Vel- see: a great pair of cro. Go a little further with hook and loop closures, zippers chinos, a cool denim on the thigh, etc. shirt and a modern coat. I For those more adventurous DIYers, you can start from bet they even have one in their scratch with material and exact measurements. There are help- closet, too. Your great sense of ful pattern and sewing tutorials to guide you, a friend or family style and personal vibe set the member or perhaps a trusted sewing guru in making your tone, so don’t put them on the own. It’s the Pinterest age, people, everybody is getting in on backburner or say “I wish I had making things from start to finish and modified clothing can …” because it might just be out be one of them. there, waiting to be had. Own your A word to the wise: make sure any DIY work you do is style and make it yours. I’d love to see and hear about your wheelchair style tested by someone who can feel every part of the garment. For and any other fashions or designers that you’d like to put example, have them try on or at least put their arm throughout out there. Maybe you even have a cool DIY design. Use a pant leg and on the seat of the trousers to make sure nothing #wheelchairstyle and keep the fashion chatter going. will rub, poke, or irritate your skin. Dysreflexia or discomfort is the last thing you need when trying to look good. GO FORTH ENABLED SHOPPER Whichever route you choose to follow, there is some general wheelchair fashion-sense you should keep in mind. First off, know the material and care instructions. Satin and wheels don’t always coexist. I know that a light-colored dry clean- only blouse will rack up quite an expense since it’ll only get one wearing at a time. If you do a lot of tugging and pulling to get something on, then you might want to spend a little more on that article of clothing to make sure it can hold up to your harder use. Fabrics with a little stretch are almost always good, as is a good tailor who can make the final adjustments and fix problems that may pop up. Most importantly, be honest with yourself. If you love the button-up, but it’s too tight on your hard-to-tone tummy or only fits if it’s really baggy, then don’t buy it. My mom and I have gone on many shopping trips together, and if it’s a major struggle to get a dress on and off, then it’s not worth purchasing. That’s why I have to find a dress that fits over my broad shoulders and fits my petite frame. It’s out there — my collection doesn’t lie! As Camilleri put it, “Clothing is sometimes the first impres- sion. It’s what you’re wearing and what you’re about.” No one Photo courtesy of IZ The IZ line prides itself on creating sharp designs that don’t look as if may know you rigged up a Velcro access point in your pants to they’ve been adapted.

OCTOBER 2015 25 CROWDFUNDED CLOTHING magine the jubilation desire for comfortable, fashionable clothing that we could wear.” of watching almost 500 With a background in fashion merchandising, McKenzie found Ipeople contribute over time to plan her clothes and connect with people in the industry $28,000 to make your dream even though she was working full time. Her Kickstarter campaign of running an adaptable started in July and ended August 29 with 465 supporters having clothing line come true. Now contributed $28,627. Initially she is only making adapted jeans, but imagine having to actually she hopes to expand to design jackets, dresses, slacks and more. make the clothes and get Her jeans feature numerous adaptations to help wheelchair users your business off the ground look fabulous and be functional, including pockets on the sides, an in the timely manner you opening for a catheter, a “tummy control” panel and more. promised all your backers. McKenzie says the response from people who have tried That’s the situation facing her pants has been ecstatic. “They love them. It’s almost like Heidi McKenzie after she they are shocked because people in wheelchairs always adapt wrapped up a successful Kickstarter campaign in August to launch to things, and then her Alter UR Ego clothing line. when something is “If I said I wasn’t overwhelmed, I would be lying,” she says. “But made for us, we don’t it’s an amazing feeling when that many people believe in what know what to say.” you’re doing. After working on it so long and not knowing how it For those who was going to turn out, I’m overwhelmed with happiness about be- missed out on the ing able to help someone else and make a difference in their lives, Kickstarter, McKenzie even if it just a pair of jeans. I’m exhausted, but it is so gratifying.” is planning to let cus- McKenzie, a T4 paraplegic since 2007, got the idea while tomers pre-order the competing in the 2012 Ms. Wheelchair America competition as Ms. same design through Wheelchair Kentucky. “That was the first time I had been in a room her website: www. with 20 other girls in wheelchairs, and I realized we all shared a alterurego.co.

RESOURCES ® Take the Guesswork out of The Para Ladder Adaptive and Universal Clothing: • ABL Denim: Men and women’s adaptive jeans and shorts; A Stairway to Independence 310/871-8145, abldenim.com • Able to Wear: Scottish-based men and women’s adaptive clothing; The Para Ladder provides safe floor transfers 0141/775-3738, www.able2wear.co.uk for wheelchair users. Able-bodied users can go • Adaptations by Adrian: Men and women’s adaptive capes, shorts from the floor to standing postition. and pants; 760/744-3565, www.adaptationsbyadrian.com • Ag Apparel: Women’s universal and men and women’s made-to- Minimize Staff Workers’ Comp claims and measure apparel; 305/619-7913, www.agapparel.com insurance cost from lower back injuries resulting • IZ: Men and women’s adaptive, contemporary designer apparel; 416/860-0783, www.izadaptive.com from lifting patients • Janska: Women’s universal outerwear, wraps and sweaters; 866/452-6752, janska.com • Koolway Sports: Men and women’s adaptive coats, capes and boots; 905/492-3188, koolwaysports.com • Legawear: Men and women’s made-to-measure adaptive suiting and pants; www.legawear.com • MagnaReady: Men and women’s universal magnetic-closure dress shirts; 866/635-8866, www.magnaready.com • Rolli-Moden (high ship costs to US though): International adaptive men and women’s adaptive apparel; 0049/6271-80777-203, rollimoden.de/index.php?language=en&=&= • Rollin’ Wear: Men’s adaptive jeans and graphic tees; We Care Designs www.rollinwear.com VA Approved • www.paraladder.com • Wheelchair Solutions: Unisex waterproof adaptive outerwear; 877-288-4988 • U.S. & Foreign Patented 800/839-6577, wheelchair-solutions.com

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eldorado_full_page_ad.indd 1 4/27/15 3:00 PM ACCESSINGa touch OUR of nature: NATIONAL PARKS BY ASHLEY LYN OLSON

ike many Americans, I grew up going on an- and with the nual family camping trips. While my friends national parks. I were traveling to cities by the beach and on will choose which cruises, I was in the wilderness somewhere parks to visit based Lplaying in the dirt and climbing trees. These are some on a combination of of my most cherished memories. Both my parents had access potential and a deep appreciation and respect for nature, something need of accessibility they instilled in all their children. My father was a information. ranger who had a dream to visit all the U.S. National Prior to launching, Parks. His dream came to an end when he was killed I knew I needed the in the car accident that also paralyzed me. I was 14. support of park rangers, My family’s life changed forever. so I reached out to Jeremy Immediately after my accident, it was clear to me Buzzell, branch chief for that a life indoors was not for me. Wilderness pres- the Accessibility Manage- ervation pioneer John Muir said, “Everybody needs ment Program at the National beauty as well as bread, places to play in and pray in, Park Service. He has 14 years of where nature may heal and give strength to body and experience working on disability soul alike.” Several years after the accident I started policy, civil rights and accessibility wheelchairtraveling.com to help people looking for at several federal agencies. Buzzell accessibility information because what was provided understands the importance of access. by the tourism industry and government entities was “Anyone can become disabled by age often insufficient or nonexistent. or injury, and anyone could have a loved One of the factors that motivated me to create the one or friend with a disability,” he says. website in the first place was wanting to know where “The parks are treasures being protected I could go and what I could still do and see. Though and preserved for the world to enjoy, so there I couldn’t fully grasp it as a child, I know now how shouldn’t be a segment of our population that revitalizing and nurturing nature is for me and many doesn’t get to experience them.” others. Access to the outdoors is essential, and it I explained to Buzzell my intentions and consists of more than just a breath of fresh air — it’s strategy for the Access to Parks Project and he also being immersed in nature and letting it soak agreed to connect me to the right people in the into your being. parks. Everything else was up to me, includ- Inspired by my dad’s dream and the 25th An- ing funding. The biggest support came from niversary of the Americans with Disabilities Act, I R&R Mobility in Atlanta, Ga., which provided launched the Access to Parks Project (#Access2Parks) an accessible rental van for me to drive to my first to improve available access knowledge about our review sites: Mammoth Cave National Park in national parks. My plan is to visit parks, survey Kentucky, Shenandoah National Park in Virginia accessibility and share what I find on my website and Cuyahoga Valley National Park in Ohio.

28 NEW MOBILITY a touch of nature:

Photo by Sara Graca

Stop in at the Countryside Farmers Market on Saturday mornings in Cuyahoga Valley National Park.

The Cuyahoga Valley Scenic Railroad is a great way to get a feel for the whole park.

To see the most wildlife in Cuyahoga Valley National Park, take this accessible towpath to Beaver Marsh in early morning or evening.

OCTOBER 2015 29 USA

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1-800-625-6335 / www.fminow.com *Mention this ad and code “mobility5” and save $500 on your next purchase. *Must be redeemed before purchase and not to be used with any other offer. The launch of the Access to Parks USA Project was particularly exciting for me because I would be traveling through states that I had never been to. I began Introduces The All-New Military Grade Stainless Steel Side-Entry my journey in Atlanta, and after a little time exploring a few of the many planta- tions in the area, I headed to Nashville Reinforced Marine Grade Cutting Edge for a brief stop and then to the first park on my agenda, Mammoth Cave. What Lowered Floor Hydraulics Design drew me there was the possibility of exploring an underground cave, some- Strength, durability and the safety Powered by Kneelvan™ technology, The benchmark for longevity and thing I thought was no longer an option your family deserves. Freedom Mo- the automatic side-entry Toyota quality in a wheelchair accessible now that I use a wheelchair. tors USA places your family’s safety Sienna comes equipped with heavy vehicle just got set a little higher. first. Why settle for anything less duty marine grade hydraulics. Built to last, the all-new military Mammoth Cave when you can drive with piece of Constructed with longevity in grade stainless steel flooring in the mind delivered from our reinforced mind, our specially equipped Toyota Sienna side-entry tackles National Park tubular steel lowered floor. Built hydraulics last longer and stand the harshest conditions, prevents (Kentucky) with the same technology race car up to extreme temperatures. Don’t corrosion and provides years of It has been 10 years since anyone in a teams use to protect their drivers. settle for electric ramps, choose worry free operation. wheelchair plunged into the dark, damp reliable hydraulics. caverns of Mammoth Cave National Park, but this is all about to change. Start- ing in summer 2016, Mammoth Cave will lins, “the greatest cave explorer ever small, three-car ferry; it’s a unique trip once again offer an accessible tour that known,” who died in the Sand Cave. and a way to really see the river that cre- explores a section of the world’s longest As park ranger Leslie Price describes, ates this park. From there you can con- known cave system. Thought your un- “Once you are here, it is more than just tinue the scenic drive into backcountry. derground dwelling days mingling with the cave itself. Visitors learn the stories The Mammoth Cave Railroad Bike Engineered to free bats were over? Never! While all 400-plus of the people who lived here surrounded and Hike Trail runs adjacent to Mam- miles of caves in the park are not acces- by a beautiful eastern hardwood forest. moth Cave Parkway from Park City to the human spirit. sible, there are more than enough for you The quiet of the birds and beauty of the the visitor center. A few small roadside to get a whiff of that thick, earthy, cool air Green River that flows and makes the parking areas have access points to this — the caves are calling. cave — all come together in a magical firm 9-mile compacted gravel trail. The cave tour is only one aspect to stew. You have to see a little bit of all of it Doyel Valley Overlook is a recommen- the whole park picture; many histori- to understand.” dation, which also has access to a lovely cal buildings and sites can be viewed At some point, be sure to take your picnic table setting. Right before the roadside, like the grave of Floyd Col- vehicle across the Green River using the bike and hike trail ends at the visitor center, it passes the historic “Dinkey Train” that took passengers and their luggage to the park for 40 years starting in the late 19th century. A short boardwalk pathway with a 2-to-5 degree grade allows access to view the Sand Cave opening, for which visibil- ity varies depending on foliage. Right next to the Mammoth Cave Hotel and across from the visitor center is the Heritage Trail. It begins as a boardwalk and then becomes one of the nicest paved trails I’ve ever rolled on at a park. The trail loops around an old small cemetery to Sunset Point, named for the beautiful views it offers as the sun dips below the horizon. The must-do trail at Mammoth Cave is the Sloan’s Crossing Pond Trail, and 1-800-625-6335 / www.fminow.com the best time is in the morning and This accessible picnic table is a feature at Doyel evening when the wildlife is most active. *Mention this ad and code “mobility5” and save $500 on your next purchase. Valley Overlook in Mammoth Cave National Park. You can hear everything stirring from the parking lot where you will also find *Must be redeemed before purchase and not to be used with any other offer. OCTOBER 2015 31 the Mammoth Cave Hotel, two rooms have been modified with roll-in showers, and around the corner are 1970s-style bungalows, one of which is scheduled to be modified with a roll-in shower by the summer of 2016. Not too far from these bungalows is a picnic area and rental facility for private events; both with modifications for more access, including raised cooking grills. On the other side of the visitor center and up the road a little ways is the campground. Two sites have power outlets for RVs and are highly sought after, so sharing is often neces- This accessible mount in Mam- sary. Sites 37 and 38 have been modified moth Cave National Park enables with raised cooking grills, paved pads wheelchair users to explore the park on horseback. and a pathway to the restrooms. The camp store, post office and laundry room have access, but there are no showers. access to picnic tables. The boardwalk of exploration options. If you have your I could have spent a few more days trail is less than a half-mile, but very own horse, bring it, because the park relaxing and leisurely enjoying the area, colorful with a number of pullouts or has an adapted horse mount that makes but I was on a specific mission and had resting pads for onlookers so other hik- getting on easier. Across the way is a dirt other rangers at others parks to meet up ers can safely pass — a superb design for road that leads to the old Good Spring with. However, I didn’t want my trip to the wetland. Baptist Church and Cemetery that was be all business and totally mapped out, The many horse trails throughout built in 1900. so I decided to take the longer route to Mammoth Cave National Park offer With so much to do, staying in the Shenandoah. Meandering the backroads power wheelchair users an abundance park, or near it, is almost necessary. At through little scenic towns was a treat,

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and though I was exhausted from the dinner. The dining hall was grand and for over 100 miles on Skyline Drive — I added hours of stopping to take pictures, the company fulfilling. On the first needed a strategy. Skyline Drive is a I regret nothing. night, I asked a man with white hair sit- national scenic byway that cuts through ting alone if I could join him. His name the beautiful Blue Ridge Mountains and Shenandoah National was Jeff Manser, and he has been coming reaches as high as 3,680 feet. Herzog to this park for over 30 years. “Of all my estimates it would take 3.5 hours of Park (Virginia) years coming here, I have never seen the continuous driving to traverse the When I reached Shenandoah National park so foggy,” he confessed. entire length of the park. Each area was Park, it was drizzling and foggy. Not I met ranger Steve Herzog early on unique, providing a piece to the whole knowing what to expect, I was mesmer- the next day. It was the only full day I park story. About a quarter of the over- ized by what I saw — a fairytale forest. had at the park, so we got right to it. Un- looks had one van accessible parking It’s only a short drive from our nation’s like the previous day, there were bright space coupled with a designated pathway capital, but Shenandoah’s nearly 200,000 blue skies with just enough clouds to ac- acres felt like a magical foreign land. The and ramp (if needed) to the ledge. spring green trees shimmered against cent the landscape. Herzog pointed out After investigating access to the main the smoky white air with just a sprin- a nearby deer nursing a newborn fawn. routes of travel around the central hub of kling of sunshine. I pulled off to one of Deer are a common sight at the park, but Big Meadows, Herzog wanted to take me the 69 overlooks Shenandoah is famous I enjoyed each one as if it was the first I on a little adventure to Rapidan Camp, for, but saw nothing but fog somersault- ever saw. What I really wanted to see was the first complex specifically designed to The Safe, Practical what most visitors to Shenandoah want serve as a presidential retreat. President Theand Safe, Convenient Practical way to ing across the road. The Safe, Practical to see: a black bear. I’d bought a park Hoover bought the land in 1929 and andtravel Convenient wherever way and to Big Meadows Lodge has been a staple and Convenient way to travelwhenever wherever you want. and of Shenandoah National Park since T-shirt the previous day with a bear on built it up over the following years. He travel wherever and whenever you want. it was built in 1939. A row of rocking it, but I wouldn’t feel worthy of wearing entertained luminaries of the Great whenever you want. No more worries about chairs inside the rock-and-timber retreat it unless I saw one. You can imagine how Depression era, such as Thomas Edison,

Nohaving more accessibleworries about welcomes visitors to rest while they gaze thrilled I was to unexpectedly see two Charles and Anne Morrow Lindbergh, No more worries about havingfacilities. accessible out into the Shenandoah Valley. I melted cubs in different locations the following and Edsel and Eleanor Ford. facilities.having accessible into the comfortable rustic ambiance as day on my way out of the park. To get to the historical site requires facilities.  Different models to meet an elevator charmed me into riding it I didn’t need any assistance checking traveling down a 7-mile service road.  Different models to meet specific needs! to the saloon on the ground floor before out the many overlooks that stretched Fortunately for all visitors, the park  specificDifferent needs! models to meet “GO-ANYWHERE” Chairs  Simple to assemble; no “GO-ANYWHERE” Chairs  Simplespecific to needs!assemble; no TheThe Safe, Safe, Practical Practical tools required. andand“GO-ANYWHERE” Convenient Convenient way way to to Chairs  toolsSimple required. to assemble; no The Safe,traveltravel Practical wherever wherever and and Convenient and  Safe and easy to use. way towhenever travelwhenever wherever you you want. andwant.  Safetools and required. easy to use.  Seat and footrest heights whenever you want.   SeatSafe and and footrest easy to heights use. NoJust Nomore more worries worries In! about about Awarded VA Contract V797D-30180 are adjustable. No morehaving worrieshaving accessible aboutaccessible having Mobility  areSeat adjustable. and footrest heights facilities.facilities.  Casters have “total-lock” accessible facilities.  Castersare adjustable. have “total -lock” Solutions brakes.  Different Different models models to meet to meet  brakes.Casters have “total-lock” • Different modelsspecificspecific needs!to meet needs! specific  Lightweight and durable, needs!  “GO-ANYWHERE”“GO-ANYWHERE” Chairs Chairs  Lightweightbrakes. and durable, SimpleSimple to assemble; to assemble; no no “GO-ANYWHERE” Chairs high-quality aircraft-grade • Simple to toolsassemble;tools required. required. no tools  high-Lightweightquality aircraft and durable,-grade  Safe Safe and andeasy easy to use. to use. aluminum. required. aluminum.high-quality aircraft-grade  Seat Seat and andfootrest footrest heights heights  Compact, convenient, and • Safe and easyare adjustable.are to adjustable.use.  Compact,aluminum. convenient, and  Casters Casters have have “total “total-lock”-lock” PORTABLE! • Seat and footrest heights are  PORTABLE!Compact, convenient, and brakes.brakes.  Won’t Rust or corrode; adjustable. Lightweight Lightweight and anddurable, durable,  Won’tPORTABLE! Rust or corrode; high-high-qualityquality aircraft aircraft-grade-grade easy to clean. • Casters have “total-lock” brakes.  easyWon’t to Rustclean. or corrode; aluminum.aluminum.  Virtually maintenance- • Lightweight Compact, andCompact, durable, convenient, convenient, high-quality and and  Virtuallyeasy to maintenanceclean. - aircraft-gradePORTABLE!PORTABLE! aluminum. free.    free.Virtually maintenance- • Compact,Won’t convenient,Won’t Rust Rust or corrode;and or corrode;  Cushions are available in easyeasy to clean. to clean.  Cushionsfree. are available in PORTABLE! (3) colors and remove  Virtually Virtually maintenance maintenance- -  (3)Cushions colors and are remove available in • Won’t Rustfree. orfree. corrode; easy to clean. easily for cleaning.  Cushions Cushions are availableare available in in easily(3) colors for cleaning. and remove • Virtually maintenance-free.  Optional accessories (3) colors(3) colors and andremove remove 30-Day  Optionaleasily for accessories cleaning. • Cushionseasily areeasily available for cleaning. for cleaning. in (3) colors include: wheeled custom  Optional Optional accessories accessories Risk-Free  include:Optional wheeled accessories custom and remove easily for cleaning. travel bag, positioning include:include: wheeled wheeled custom custom Trial travelinclude: bag, wheeled positioning custom • Optional accessoriestraveltravel bag, bag, positioning include: positioning travelbelts, bag,slide -positioningout commode wheeled custombelts,belts, slide travel slide-out -commodebag,out commode belts, slide-out commode tray,tray, 2-way 2- wayadjustable adjustable belts,tray, 2slide-way-out adjustable commode positioning belts, slide-out commode tray, 2-way adjustable tray, 2-wayheadrest, adjustableheadrest, and andheadrest,upgraded upgraded and For Home AND On-The-Road; headrest, and upgraded ForFor home home AND AND on -the-on-the-road;road; When When ya Gottaya Gotta Go, Go, We We Go GoWith With Ya!” Ya!” headrest,tray, 2-way and adjustable upgraded upgradedcushions! cushions!cushions! cushions! For home AND on-the-road; WhenWhen ya Ya Gotta Gotta Go, Go, We We GoGo With Ya!” Ya!” cushions!headrest, and upgraded For home AND onwww.goesanywhere.com-the-www.goesanywhere.comroad; When ya [email protected] [email protected] Go, We Go With 800- Ya!” 800-359 359-4021-4021 cushions! For homewww.GoesAnywhere.com AND on-the-road; When | [email protected] ya Gotta Go, We Go With Ya!” | 800-359-4021 www.goesanywhere.comwww.goesanywhere.com [email protected] [email protected] 800- 800-359359-4021-4021 www.goesanywhere.com [email protected] 800-359-4021 OCTOBER 2015 33 Custom wheeled travel case “For home AND on-the-road; When ya Gotta Go, It'll Go With Ya!" available. provides a daily shuttle at 2 p.m. that can There are plenty of accessible overlooks to view safely transport two wheelchairs at once. the Blue Ridge Mountains on Skyline Drive. Pickup is at the Byrd Visitor Center and reservations are required. The tour is led by a park expert who explains anything and everything you wish to know, and then some. No access modifications have been made in order to preserve the original foundation, but some visitors with power and manual wheelchairs will still be able to get inside the original cabin where President Hoover and his wife slept, depending on their chair’s width. The majority of the tour is outside, highlight- ing the lifestyle of the times. I pictured President Hoover casting his fishing line at his favorite hole as armed guards hid in the forest, ready at a moment’s notice. After a speedy lunch at the Skyland Resort Grab’n Go, located in the Pollock Dining Room lobby, which also has a exceeds an 8 percent grade. Right before and the Big Meadows Campground. lift to the dining room, I was ready for this point is a little blue sign reading “not Furthermore, only a couple of sites at some trails. The one-way, mile-long Rose recommended.” Still, it was obvious that Big Meadows Campground have power River Fire Road Trail is an option for a lot of thought went into making this outlets, like site 229, which means shar- many power-assisted wheelchairs, start- firm gravel trail rollable. A map at the ing is expected. Site 53 is tent-only and ing from the parking lot at the Fish Gap special, because it is more secluded than Overlook. The firm, gravel road wanders beginning of the trail shows all the trail others yet still has access. It requires a down to a small, picturesque waterfall details, including the exact grade and 25-yard trek from the parking space to flowing into a babbling brook. The where 17 benches are located. Yes, 17 the site itself, but it’s worth it. I’d pick Forest Trail is another option for power benches, along with five landing or rest this spot every time. wheelchair users and those willing to pads for wheelchairs. Even if I am not staying overnight, I muscle over or around water-diverting Besides the Big Meadows Lodge and rely on campgrounds as places to rest, mini dams along the way. the Skyland Resort, Shenandoah visitors picnic and use the restroom, but Shenan- The trail that has seen the most can sleep under the stars at one of four doah also has several large picnic areas access modifications is the Limberlost campgrounds. The park’s campgrounds with access. Keep in mind that other than Trail, just south of the Skyland Resort. expert, ranger Hazel Mehne, estimates A specific group of young rangers joined that more than a dozen sites at the four the Big Meadows Lodge and Skyland me on this hike. According to the Ar- campgrounds are flat with raised fire Resort, the only other place for food is in chitectural Barriers Act of 1968, this 1.3 pits, extended picnic tables and access to the northern region of the park at the Elk- mile-long looped trail is only partially facilities. Roll-in showers are available wallow Wayside Camp Store. Store food accessible due to a small section that at Big Meadows Lodge, Skyland Resort wisely, though, as you are in bear country. I didn’t want to leave Shenandoah, as it meant that I had only one more park to go to before the end of my trip. Being able to get to know the parks so inti- mately, though rapidly, with the rangers was a unique experience. I felt bonded with many of them. One in particular happened to work at the park where my father was a ranger, which was a wonderful small-world coincidence. I felt my father’s presence a lot on the trip, as if I was seeing the parks through his eyes. These feelings were confirmed at Shenandoah when I purchased a toy ranger figurine as something fun The National Park Service rangers and cute to take photos with. When I are a helpful and friendly bunch. removed the ranger from his packag- ing, I noticed a small name card that

34 NEW MOBILITY read “Ranger Jim” in a few languages. I Akron, Ohio. The 33,000-acre park sits Special events are often associated with nearly stopped breathing — this is my within the boundaries of the Ohio & this train and are particularly fun for father’s name. Needless to say, Ranger Erie Canalway, a National Heritage Area children, like a visit from Thomas the Jim will accompany me from now on to dedicated to preserving and celebrating Tank Engine and The Polar Express. all my park visits. the story of the canal that helped Ohio Paralleling the Ohio & Erie Canalway and the country grow. Twenty miles of is the Towpath Trail. Voted the best bike Cuyahoga Valley the canal’s historic route can be found trail in Ohio by readers of Ohio Maga- in Cuyahoga Valley National Park. The zine, the Towpath is popular, so expect National Park (Ohio) blend of county and federal government crowds. This scenic trail is an excel- Besides Ranger Jim, no other ranger on lands, mixed with partner-run services lent option for those with access needs this trip spent more time with me than and properties, creates a diverse range of because it is wide, firm and, for the most Arrye Rosser, my guide for exploring entertainment at Cuyahoga Valley that part, flat; but since it is so long, route Cuyahoga Valley National Park. I have somehow works. planning is recommended. The Sta- never been to a national park like CVNP. The Cuyahoga Valley Scenic Railroad tion Road Bridge area, the section from It was odd enough to not enter through an official admission gate, something I is an iconic symbol for the park and one Boston Store Visitor Center to Lock 29 had only experienced for the first time at of the best ways to get a feel for the whole (Peninsula), and the Hunt House area Mammoth Cave, but as I drove through park. It operates on weekends year- are all great places to explore the trail. the park and passed a winery, a theater, round and Wednesdays-Sundays from The newly refurbished Canal Explora- an art gallery, all kinds of homes and June through October. I would recom- tion Center has informative exhibits, gift farms, concert venues, and even over a mend purchasing a National Park Scenic shop, a very large accessible bathroom, freeway, I thought, “This can’t be right.” Day Pass and requesting a seat in the and a lift to the second floor. If you visit But it was. car with a lift. Call for tickets and check on a summer weekend, catch the canal Cuyahoga Valley is one of America’s www.cvsr.com for the train schedule. lock demonstrations. youngest national parks, earning the of- Start at the Boston Store Visitor Center Connecting to the Towpath Trail ficial title in 1974 when local citizens and to get maps and plan logistics. Food is at Station Road Bridge Trailhead is a their representatives sought to preserve available at partner-run Trail Mix stores paved Cleveland Metroparks trail worth this scenic greenspace nestled between in Boston and Peninsula and on the exploring that loops around Brecksville the industrial cities of Cleveland and train; most passengers bring their own. Nature Center through Harriet Kee- Drive everywhere with both hands on the wheel!

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OCTOBER 2015 35 ler Memorial Woods and past a small National Park has much more to offer. still be seen from the parking lot. meadow. Bald eagles are commonly seen You can try archery at the accessible When the sun goes down, most multi- along the river just north of this trail- Hampton Hills range or making butter at day visitors will need to find accommo- head. Beaver Marsh, just north of the Ira the Hale Farm and Village. Hale Farm is a dations outside the park. Cleveland and Trailhead, is another favorite Towpath living history experience within the park Akron are a short 20-30 minutes away destination. It is most alive in the early boundaries where kids can learn about with smaller towns in between. Only mornings and evenings with beavers, farm lifestyle. Afterward, head to the a few campsites exist, and none have otters and great blue herons. Hunt House, which offers family-friendly access modifications. If you are adven- A short, firm, flat trail leads to the exhibits and drop-in summer activities. turous (and lucky), stay at the histori- Everett Covered Bridge, a photo favorite One unique way to explore the area cal Stanford House. Park-owned and for visitors. Horseshoe Pond Trail leads to is through an activity called “Canalway partner-operated, this unique lodging an accessible fishing pier before curving Questing,” where you follow a series of has one modified room. The classic white around to a picnic shelter. The park has rhyming clues that lead to a treasure house has rocking chairs on the porch over a dozen picnic areas; the biggest have box. Each “quest” weaves a story about and locally made wood furnishings that what makes the place perfectly complement each other. Room special. There are over 9 can sleep four and has the most access 20 adventures within because of the ground level location and the national park, and modified shower, although I found it to more beyond. Details be too narrow for a lot of wheelchairs. about the Ohio & It was storming the night I stayed at Erie Canalway and the Stanford House, and I was the only questing in particular reservation. I sat for a while on the porch can be found at ohio- listening to the storm’s symphony; rain anderiecanalway.com. bouncing off tree leaves, the loud crack Live music is a of thunder exploding with rippling special and unex- vibrations, vehicles swooshing by on the pected feature of the road, and the faint laughter of campers park, and it comes in caught in the elements. Across the road, many forms. Howe mist was beginning to rise from the Meadow doubles as meadow — illuminated by the moon. At a stage for musicians one point I rolled out from the covered at the Countryside porch to let the warm rain wash over Farmers’ Market on me. Lightning struck nearby many times Built in 1843, Cuyahoga Valley’s Stanford House offers lodging for Saturday mornings, that night, and I slept like a baby. weary campers. It now has one fairly accessible room. and for free Music in the Meadow concerts If you are able to contribute to this more access and covered tables for groups. on select Wednesday evenings from June mission either as a writer (park scout) or In the Bedford Reservation’s Hemlock to August. At the accessible Happy Days with a tax-deductible donation — 501(c)3 Creek Picnic Area, there is a youth base- Lodge, Music by Nature runs during status — to help pay for food and gas, ball field and access to a few playgrounds. the summer months and the Cuyahoga please visit wheelchairtraveling.com or The 34-mile paved Bike and Hike Valley Heritage Concerts run from email [email protected]. Trail runs along the park’s east rim and October to May; schedules are on the is managed by Summit Metro Parks. park website. What is not listed on the Those with power-assisted wheelchairs park website is the Cleveland Orchestra’s Resources will have no trouble with this trail, but • Access to Parks (video); summer concert series at the Blossom those without will need to overcome youtu.be/2RRI_2EXhQk Music Center, where some of the world’s many inclines. The rock ledges south • Cuyahoga Valley National Park; finest musicians have performed since it of Boston Mills Road and Brandywine www.nps.gov/cuva/index.htm opened in 1968. Falls offer the best scenery. Once again • Mammoth Cave National Park; many horse trails offer options for power More possible activities at the park www.nps.gov/maca/index.htm wheelchair users (and horse owners). include wintertime skiing, sledding and • National Park Service; There is a mounting platform at the tubing. The Pine Hollow parking lot for www.nps.gov/index.htm stables in the Brecksville Reservation. sledding is at the top of the hill. In the • Ohio & Erie Canalway; winter or when fewer leaves are on the ohioanderiecanalway.com trees, you can get a lovely view of Kendall • Shenandoah National Park; Not Just Trails Lake. Nearby, off Truxell/Kendall Park www.nps.gov/shen/index.htm and Nature Road, is the Ledges Overlook. The extra • Wheelchair Traveling; Exploring all the trails could keep you rocky terrain of this overlook creates ac- wheelchairtraveling.com busy for months, but Cuyahoga Valley cess challenges, but glorious sunsets can

36 NEW MOBILITY Real People, Real Lives, Real Progress DISABILITY INCLUSIVE

PHOTO CONTESTSponsored by New Mobility MagaziNe and PhotoAbility.net Stock Images

We are looking to break the mold and discover the best inclusive photos that will change the way the public, advertisers, magazine editors and business owners see disability. Your images can help eliminate social, structural and professional barriers!

Images should depict real people with disabilities of all ages in the following categories: 1. Lifestyle activities (dinner with friends, gardening, working, parenting, or enjoying a hobby) 2. Travel 3. Creative (unusual places, stylized, creative use of wheelchair parts, reflections, shadows, etc.) 4. Sports 5. Business/education 6. Portraits

The contest will run for 4 months, from September 1 to December 31, 2015. We’ll announce monthly winners online and award the Grand Prize in the February 2016 issue of New Mobility.

• Monthly winners will each receive a $100 cash prize life beyond wheels • Finalists and winners will be published on Photoability.net (you’ll receive royalties for images sold) • Finalists and winners will be featured in a special gallery on Photoability.net • Winning images will be published in New Mobility • Grand Prize winner will receive a $500 cash prize and a write-up in New Mobility that includes the Grand Prize image

Photos must be taken with a camera that is at least 8 megapixels and may include iPhones and other mobile. All people featured in the images must be willing participants in the competition and sign a model release. You may enter as many photos as you wish. See all terms and conditions and register for contest and upload images at photoability.net/disability-inclusive-photo-contest.html DO YOU HAVE A RELIABLE SOLUTION TO YOUR BOWEL PROGRAM?

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his summer my family converged on Maine’s scenic rugged izing views of powerful waves crashing against stacks of rock, coast from five far-away states to celebrate our biannual transforming into spray that fell harmlessly back to the sea. Many T family reunion, this time on Mount Desert Island. The major- trails ran along rocky ledges, providing hours of fun for the younger ity of the island is occupied by Acadia National Park, America’s members of our family. I had the perfect view of the whole scene oldest national park east of the Mississippi. The park will celebrate from atop the viewing platform. its 100th anniversary next year and thanks to preservation efforts, 5. We hit the streets of Bar Harbor to find shopping opportuni- today’s tourists can enjoy many of the same sights and experiences ties. I carefully navigated the rough portions of sidewalk. Although as they did in 1916. In our large diverse family, interests and activity few stores were accessible, the outing was delightful. My niece as- levels vary, and ages run the gamut from 4 to “senior.” Yet all of us, sisted me at inaccessible stores by fetching Jordan Pond ice cream including myself, a quadriplegic who yearns for the great outdoors, (excellent stuff!) and souvenir T-shirts. found that the island had plenty to offer. Here are a few highlights: 6. Low tide revealed the half-mile packed dirt and gravel land bridge to Bar Island. A rare opportunity to walk or wheel across from the mainland to an island rose from the ocean. I sat on the level dirt road surrounded by sea, the smell of salty ocean in the air and the call of galls over head, embracing the calm of this unique setting. 7. In the quiet town of Southwest Harbor, a lively steel drum concert entertained the whole family on a Monday evening. Performing under the open-sided canopy in a paved, flat, open space, the band resounded with exciting Caribbean island-style music, encouraging the crowd surrounding the shelter to dance. It thrilled us all. After each day of adventure, we enjoyed our stay at the Cannery’s Marina-Side Condo Stern Unit (available via VRBO). Although not perfectly accessible, the owner went out of her way to retro-fit what she could to provide functional accommodations. 1. Biking, strolling and rolling by wheelchair along the 53 miles I was pleased with the outcome, knowing I could relax, carefree, at of gently sloping, hard-packed dirt and gravel carriage roads the ocean’s edge each evening. topped my list. Arched, stone bridges scattered throughout the park reminded me of the influence the Rockefellers had on the area by building these roads. I admired the picturesque view of Eagle Lake with Cadillac Mountain in the distance, and was thrilled watching ducks veiled by the rushes growing at the waters’ edge. 2. Cadillac Mountain offered scenic views of the Atlantic Ocean from its 1,529-foot summit and provided gently sloping, serpentine paved trails for ambling and wheeling. Multiple platforms gave different vantage points along the trails to admire small emerald islands in the sapphire sea. 3. Jordan Pond House hosted an afternoon tea featuring popovers, traditional hollow muffin-like pastries. After perusing the accessible gift shop, we followed a sloped, hard-packed trail that led from behind the house to Jordan Pond. Walkers and bik-

ers could continue the trail right and left around the pond to the Photo Courtesy of the National Park Service Carriage Roads, but it was too rocky to go beyond the east edge At the end of our week, like blowing fluff from a dandelion, our by wheelchair. The view of the North and South Bubble Mountains family dispersed. We headed to our respective homes, carrying was lovely from the pond’s edge where I sat. fond memories and mementos, spectacular photos and an earnest 4. My favorite climbing area, Thunder Hole, presented mesmer- appreciation for the hospitality Mount Desert Island had shown us.

OCTOBER 2015 39 QUANTUM REHAB ® Presents

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“Everybody deserves to be at eye level.” CHRIS MAUER, MPT, ATP Shepherd Center

“It allows you to actually have face-to-face communication rather than face-to-waist communication.” WILLIAM MATTINGLY, OTR/L, ATP, SMS Norton Neurosciences & Spine Rehabilitation Center

“With the iLevel chair, you can drive [at] walking speed, which is huge.” KATE COLLINS, PT, DPT, ATP Madonna Rehabilitation Hospital

“I was able to drive and elevate at the same time.” JENNIFER BARROW, OTR/L, ATP UF Health Hospital, Jacksonville

QUANTUM REHAB PRESENTS IN ASSOCIATION WITH THE EDGE TEAM AND CLINICIAN FEEDBACK FOR MORE INFO: WWW.iLEVEL.REHAB NEW ILEVEL POWER ADJUSTABLE SEAT HEIGHT TECHNOLOGY EXCLUSIVELY ON THE Q6 EDGE 2.0 www.ilevel.rehab | /quantumrehab | /quantum_rehab | (US) 866-800-2002 | (CAN) 888-570-1113 John and Alison Hock- enberry built a beautiful family and made it look easy. Was it? See their story, page 44.

INTER-ABLED COUPLES: CHALLENGES AND JOYS

BY BEN MATTLIN

ou remember that movie Guess Who’s Coming It’s a question I know all about. I’m a lifelong To Dinner, in which the elderly white parents quad, born with spinal muscular atrophy, mar- Ycan’t accept that their blonde daughter wants ried for 26 years to a nondisabled woman. To be to marry a black man (even if he is Sidney Poitier)? It sure, there are challenges (as in any marriage). Yet was 1967, at the height of the civil rights movement, there are also distinct pluses. Honesty, tolerance, and marriage equality was one of the final bastions to patience and uncommon intimacy, among them. cross, the true measure of acceptance and integration. Still, that doesn’t stop people from wondering, Same goes for disability rights, even today. Put from gossiping. So, to set the record straight, I ramps in your stores and grab bars in your rest- decided to ask inter-abled couples about how they rooms, but how will you really feel if your son or cope, what they find particularly difficult, and daughter marries one of us? what tips they have for others.

Photo by Edward Acker OCTOBER 2015 41 “At times I thought I just won’t have a But that’s not the end of Burcaw’s girlfriend. Ever.” story. As if in answer to my unspoken Then everything changed. “I got an question, he told me that good sex alone email from this girl who said, ‘Hey, I read wasn’t enough. “A few months later,” he your blog and I love it,’” he explained. “I went on, “I realized I didn’t really connect kind of rolled my eyes like I do whenever with her. The only reason I jumped on it I get one of those emails. But she said she was because she was the first person who would really love to meet and hang out.” really wanted anything more than friend- What developed was a virtual friendship with me. But I didn’t want to break ship, conducted entirely online and by up with her if I was never going to find Anna and Shane phone. Then she came over to visit. Bur- someone else.” caw’s family respects his need for privacy. The fear of never finding someone else One thing led to another. can be painfully intense. Yet break up GETTING STARTED “I taught her how to lift me, which was he did. Things happen quickly over the For a youthful perspective, I talked to a big step! She was nervous but she wanted Internet. He soon connected online with Shane Burcaw, the 23-year-old blogger to try it, because we couldn’t really be in- another woman who liked his blog. She and author of Laughing At My Night- timate other than kissing with me sitting became his second girlfriend. But after mare, and his girlfriend Anna Rein- in the wheelchair,” said Burcaw. “I don’t a few months, she decided she couldn’t alda, 21, a junior at the College of New have any type of lift device in my house. take the pressures and uncertainty of his Jersey, in Ewing, N.J. Like me, Burcaw Anyway, we were able to be intimate once progressive disability. She dumped him, was born with SMA. He uses a power I was out of my chair. I was 19, and that saying things like, “I’m giving up so much wheelchair and weighs just 64 pounds. was the most amazing experience of my of my life to be with you,” he recalled. Living with his parents and younger, life. It was different for her, obviously, but Then late last year, Reinalda attended nondisabled brother in suburban Penn- she didn’t mind it. I was able to do enough a speech he gave at the University of Con- sylvania, he’s become a kind of unlikely on my own that it worked out.” necticut. “It was clear early on that our Internet sex symbol. Did she have any kind of prior experi- personalities clicked,” he recalled. For one “Four years ago, I had never had ence with people with disabilities? “None thing, they could communicate honestly a romantic relationship,” he told me. at all,” he answered. and without fear. “We haven’t been afraid

42 NEW MOBILITY to say, ‘Let’s try doing this a different she added, until five months later, after way,’” he explained. a trip home to her parents in California. They also share a wicked sense of They basically told her she didn’t have to humor. Asked if they’re dating, they reply settle for someone like that. “That’s when I almost in unison, “No, we’re pruning!” made the decision I would be OK with his They’re looking forward to moving in to- disability,” she said. gether at some point in the future, if they True intimacy — emotional and physi- can ever figure out the logistics. “We’re cal — may take time, honest communica- excited by the challenge,” he said. tion, and planning. Wan and Watson still wrestle with the advantages and disadvan- PREPARING FOR tages of having his attendant around, for MARRIAGE instance. They want privacy, but she’s not Matt and Anna For Anna Wan, a nondisabled 30-year- ready to take over all of the duties. “I stop old with a Ph.D, currently an assistant chair. She just hadn’t realized how thin at wiping his butthole,” she said frankly. professor of mathematics education in and weak he actually was. “But we con- “However, I’m always worried that some- suburban Georgia, and Matt Watson, a nected so well, talking about things that one else won’t do a good enough job.” 26-year-old student in Mississippi with we really have in common. Like values.” Beyond that, other obstacles arise. — you guessed it — SMA, marriage is She’d had to drive four or five hours When she talked to her doctors about definitely in the cards. (Note: It’s purely to meet him on his own territory. He having children with Watson, she was a coincidence that all examples here are didn’t have transportation options. That shocked by their discriminatory atti- heterosexual couples in which the male didn’t bother her, but she did have second tudes. “Their responses,” she said, “are partner has the disability and the female thoughts about what he calls his “disabled always disbelief — ‘you plan on having doesn’t. They just happened to be the ones moments,” such as when his head sudden- children with him?’” who responded to my queries.) ly falls over. “What helped with my initial Yet they remain optimistic. “Most of “When I first met him in person, I discomfort was that it caused us to have a our stress comes from others’ negative was taken aback,” Wan confided. She conversation about it,” she said. reactions,” said Watson, via email. “But had been introduced to Watson through She wasn’t comfortable enough, when I’m with her, all my problems eHarmony, so she knew he used a wheel- though, to get “that physically intimate,” vanish away.”

OCTOBER 2015 43 MAKING IT LAST involved. So she had seen his disability in No dice. Perhaps the difference in our For a more seasoned perspective, I caught action, so to speak, and he didn’t try to views stems from the fact that his disabil- up with Alison and John Hockenberry. hide it from her. They were unshackled ity was acquired as a young adult, whereas They have been married for 20 years. from some of the hesitancies other inter- mine is lifelong. “In my marriage today,” Twenty years before that, at the age of 19, abled couples face. “I was always very up- John responded, “if there are challenges John was in a car crash. His injury is an front and independent about my physical related to the disability, they’ve been about incomplete dural lesion at the T4-6 level, needs and wanted a limited amount of how being a paraplegic makes you feel like for those keeping score. He’s paralyzed help, wanted to prove myself as a fully you can’t ask for help. It makes it hard to from roughly the chest down. independent partner,” John said. But in talk about what’s going on inside of you. It Even in the early post-injury years, time, he found that “the inner questions makes you independent to a fault.” John had an incredible drive to succeed, to of how being a person with a disability Independent to a fault? achieve, to not let his paraplegia limit his relates to your ability to be honest, to be “Maybe I could rephrase that,” volun- options. Five years post-injury he became forthcoming, to be able to ask for help, to teered Alison. “John is very stubbornly a correspondent for National Public be able to express your own needs — that independent in terms of proving and Radio, where he spent the next dozen was much more of a challenge.” demonstrating to himself and others that years reporting from far-flung war zones. This leads to his Theory of the Disabil- he can get around just fine, doesn’t need He went on to ABC News and televi- ity Bubble. “The challenges for me have help. That’s served him well in a lot of sion’s Dateline NBC, has won Peabody always been related to how the disability ways, and it was appealing and attractive and Emmy Awards, and today hosts a puts you in something like a bubble, to me. Maybe it’s a female thing, to find a live morning national news program on which makes it harder to communicate, very independent, bold person attractive. WNYC and Public Radio International. harder to ask for help and do the kinds So those things definitely serve you well in Alison, who is not disabled, also of things that are really important in a many ways. But in a long-term relation- worked at ABC News and has won several relationship,” said John. ship, communicating about your needs Emmy and Peabody Awards herself. She’s At which point I interrupted. “I al- and hearing another person ask you what now a producer at The Documentary ways thought having a disability meant you need are also important, especially as Group in New York. They had covered you were good at asking for help,” I you age. Being able to be vulnerable and Newstories Mobilityt and traveled OCT 2014 together 6000TRS_mm_346.qxd as work said. 9/26/2014 “It removes 9:44 AM artificial Page 1 barriers of not independent, and being able to com- colleagues before becoming romantically pride and invulnerability.” municate about that, is critical.”

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44 NEW MOBILITY “You need to be able to answer your good parent, and I really didn’t want to son promptly, “so we could have more kids’ wide-open questions about what’s be in that situation.” time together.” going on with you,” said John. “You need As a high achiever and public figure, Time — that may be the key for all these to be able to say to your son or daughter, he wasn’t used to being found lacking, to couples. They’ve been forced to address maybe four times a day, why you can’t being excluded. And he certainly wasn’t challenges other couples can put off or avoid walk. Or what happened to make you used to failure. altogether. They’ve had to face the reality break your back. And you have to be able What about regrets? “If you could of their physical differences, of how society to do that and not be tired of it. You have change one thing about your situation, treats them. Having already looked the to really understand how the child is what would it be?” I asked the couple. beast in the eye, they emerge stronger, with learning how you are different from other people, and how that’s OK. You can’t be “More outside help, more privacy, a cure few illusions or unrealistic expectations. like, ‘Hey, I’m fine. Don’t notice me. I’m for paraplegia?” That’s the secret glue, the special intimacy. not just a wheelchair.’ You know? That “More babysitting,” answered Ali- Who could complain about that? doesn’t work with kids.” COMMUNICATION IS KEY What about being in public, I wondered. Do you Believe in Magic? Is John so famous that no one treats him like an incompetent imbecile just because he’s paraplegic? Bowel & Bladder Basics are our Business! “It was an issue, how other people saw us together,” he said. “People would Urological Supplements Suppositories only talk to Alison; they wouldn’t talk to me. Or they would conclude something Cran Magic + ™ The Magic Bullet™ about us. This was only an issue early on, bladder, kidney & urinary health. safe & sure! Faster acting, because I had learned to tune it out. I was water soluble suppositories. less conscious of people looking at me. Mannose Magic™ But Alison was suddenly very conscious maintain a healthy urinary tract- flush Bowel Supplements of being the center of attention when we away E.coli. Magic Cleanse™ were a couple. The only thing I can com- promotes fuller movements pare it to is being an interracial couple.” with greater ease But even these uncomfortable encoun- (and less time). ters only made them feel closer. “It really pushes you together,” John continued. “The way you’re looked at externally can Enzyme Magic™ produce anxiety, and you really need to better digestion= better elimi- talk about that together as a couple. It sort nation. of makes you be honest. And then, as time goes on, you really need to make sure you’re aware of how different you are from each other. One person is disabled, the other is not. You need to make sure you’re really communicating at the deepest level, and sometimes disability can get in the way — particularly the idea that ‘I’ve got everything figured out’ and that kind of Mention This * stuff. It can be a real hindrance. So you Ad and Receive have to burst that bubble.” I wanted to know about their decision 5% OFF to have children (they have five, including two sets of twins) and to use in vitro fertilization for their first two pregnan- www.conceptsinconfidence.com cies. “Alison really drove that effort,” he 2500 Quantum Lakes Dr. #214 recalled. “I was more passive. I had a real fear of failure. I feared it wouldn’t work. Boynton Beach, FL 33426 I feared we’d have to adopt. I feared hav- (800) 822-4050 ing to go through the adoption process, *one time discount per customer where I might have to prove that I’d be a

OCTOBER 2015 45 Cars I Have Loved Sydney on Wheels Disabled Detectives

Second Chance Rehab WE ARE

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JOIN US United Spinal Association knows that disability is a shared experience that affects you, your family, friends and communities. Fortunately, we are stronger together, and United Spinal brings decades of expertise to help: information, peer mentoring, advocacy and much more. Become a member today and Share the Journey. 800.404.2898 • unitedspinal.org SPOTLIGHT: LOS ANGELES BY OLIVIA ALMALEL

MY TAKE SKINNY ON THE CITY The wheelchair community here is thriv- Los Angeles is the home of world-class theme parks, Hollywood and the entertain- ing, with plenty of options for wheelchair ment industry, beautiful beaches, and a variety of world renowned landmarks. De- users to enjoy active and fulfilling lives. pending on our notorious traffic, you are minutes away from the ocean, deserts, A number of local organizations offer forests, and snow-capped mountains; and to top it off, year-round sun and mild enough recreational opportunities to all temperatures make it a haven for wheelchair users. but overwhelm even the hardiest enthu- siasts, including Triumph Foundation, United States Adaptive Recreation Center, Casa Colina Outdoor Adven- tures, Life Rolls On and UCLA Adaptive Recreation. Water and snow skiing, surfing and skating, handcycling, baseball, target shooting and curling — you name it, we’ve got it. If sports aren’t your thing, other options include attending the annual Photo by Christian Schd/Wikimedia Commons Abilities Expo — one of the largest in the country, or there is the Festival of Human Learn Abilities, located at the Aquarium of the about the Golden State Pacific in Long Beach, which showcases the Going to the Getty Center? Enjoy taking the easily Chapter on talents of the disabled community. Also, accessible tram up the hill. next page programs like Artists for Trauma run art workshops in a variety of mediums to ex- on with several wheelchair dance schools, with WCMX events (find Box Wheelchairs plore your creative side. Get your wheeling like Infinite Flow, or you can go extreme on Facebook for information).

AVAILABLE HEALTH CARE Center is one of America’s most beautiful makes for great, easy rolling. The museum The Los Angeles area is chock-full of hos- museums and surprisingly accessible. An offers a number of guest speakers, perfor- pitals that specialize in spinal cord injury, easily accessible tram transports visitors up mances and events, so make sure to check with Northridge Hospital, Rancho Los the hill to the 110-acre site. The museum’s the calendar at www.getty.edu/visit/center. Amigos Rehabilitation Hospital and Casa bounty of European and American art Colina Hospital heading the list. The need could keep you busy for days, but it is just as GETTING AROUND easy to get lost exploring the vast gardens, for accessible gyms and adapted exercise Getting around is more fun when you have admiring the architecture or simply enjoy- facilities with cutting edge recovery ser- an adventurous spirit. If you don’t have vices has been met by places like Strides ing a snack from the café and looking out on Southern California. If you get hot ex- personal transportation, you can look up SCI Functional Fitness, VIP NeuroReha- local mobility companies like Ability Cen- bilitation Center, NextStep Fitness, Center ploring the many accessible paths outside, the air-conditioned interior of the museum ter (in Long Beach and Orange County) to of Restorative Exercise, Goodwill Fitness inquire about renting wheelchair-accessi- Center, and Cal State Northridge’s Center ble vans. If you need to get around sooner of Achievement. They have filled the gap MUST SEE, MUST DO rather than later, most taxi services have between traditional outpatient rehabilita- apps for the smartphone user to get an action therapy and commercial gyms. All ROUTE 66 CLASSIC GRILL: Ameri- cessible taxi. Public transportation apps levels of disability are welcome and have cana rules at this tasty ’50s diner such as nextbus (www.nextbus.com) also many options to choose from while having throwback in Santa Clarita. It’s a little make it easy to locate buses and timetables the opportunity to exercise in a safe envi- bit of a drive from the city (about 30 for local adventures. The growing Metro ronment with knowledgeable staff. minutes north of UCLA), but they Rail Service is also 100 percent wheelchair host the Triumph Foundation’s Eat- accessible. If you need curb-to-curb ac- PLACES TO GO for-a-Cause Fundraiser every year, cessible service, visit www.go511.com to Located atop the Santa Monica Mountains and everyone always has a great time inquire about visitor status with available and offering majestic views of Los Ange- on their accessible patio. accessible and paratransit services of Los les and the surrounding area, The Getty Angeles or Orange County.

OCTOBER 2015 47 Chapter Check-In

Triumph Foundation (Golden State Chapter): Rising from the Ashes, Stronger Than Ever

On June 26, a fire ravaged the Southern Cali- says. “We hope we can build on those con- fornia storage unit containing all the merchan- nections and keep them involved with the dise and equipment that the Triumph Foun- organization going forward.” dation had accumulated since its inception He pointed out that the fire also offered an in 2008. The care baskets the organization opportunity to include United Spinal’s logo delivers to newly injured people, the DME the on some of the newly replaced merchandise organization had bought and had donated, the in light of the Triumph Foundation’s recent T-shirts and marketing material the organiza- decision to sign on as a chapter. Skinner says From helping people modify their homes to tion had used to grow into one of the region’s the union was long in the making. coaching kids’ basketball, Triumph Foundation “We’ve been working closely with United is there for its members. Spinal for a number of years,” he says. “It was just kind of inevitable that we joined forces helps people with financial restraints, assists officially.” Skinner is excited to be a part of with home modifications, oversees adaptive United’s national network of chapters and sports and holds numerous fundraisers and support groups. “We are focused on Southern community events. Skinner’s wife, Kirsten, California but we get contacted by people all even organizes annual wives and girlfriends over the nation regularly,” says Skinner, “so I’m frequently referring them to other chapters that may be able to serve them better and provide the peer one-on-one support they need.” Connecting with newly injured people and providing peer support has always been at the Delivering care baskets to the newly injured heart of Triumph Foundation. Skinner found- is one of Triumph founder Andrew Skinner’s (right) favorite things to do. ed the organization four years after he was injured as a means to help others who may or most recognizable SCI-related organizations may not have had the support he did during — all of it was gone. “We really started back his recovery. “In 2008 we never dreamed it at square one,” Andrew Skinner, the Founda- would become such a force in the disabled Triumph takes to the streets once a month. tion’s founder, says. “It was devastating.” community. I thought I’d just be doing men- retreats for the significant others of men with But in the fashion typical of a SCI survi- toring in my local hospital.” SCI. Skinner says the key to Triumph Founda- vor, Skinner, a quad, wasted no time bemoan- One hospital turned into two, two turned tion’s growth has been following his heart. ing the situation and quickly got to planning into three and soon Skinner and friends were “I don’t have any ulterior motives,” he says. its rebirth. “Time has allowed the wounds driving all over Southern California to visit “When I go visit people, I’m not trying to sell to heal,” he says. “I really think we’re going people in rehab and home settings. As the them anything, I really just go in there want- to emerge from these ashes better than ever. organization expanded its reach, it added ing to see them make the best of themselves Sometimes a fire will lay a soil that’s even programs to serve its new clientele. “From they possibly can.” more fertile and enable even greater growth.” there we just recognized more need, whether With so many programs to support, fund- Skinner was overwhelmed with the it be helping people modify their houses, or raising has grown more important. An annual outpouring of support from the local com- helping people with inadequate health insur- casino night and a number of smaller fund- munity. “We connected with many people ance get the equipment that was necessary,” raisers help, but grants have taken on a more through the fire that we most likely never says Skinner. Today Triumph Foundation critical role. The organization’s longevity and would have if it weren’t for this tragedy,” he delivers care baskets, offers peer mentoring, reputation have made the going easier, but Skinner says the key to landing grants is un- derstanding the process is “a numbers game” and being relentless. “You apply to enough of them and one of them will come through,” he says. “You can’t take it personally because there are so many other worthwhile charitable organizations out there.” To find out more about Triumph Founda- tion, visit triumph-foundation.org or www. Photo by Tiffany J Photography Triumph Foundation’s rapid growth has even surprised Skinner. facebook.com/TriumphOverSCI.

48 NEW MOBILITY 48 NEW MOBILITY Advocacy

What is United Spinal’s Advocacy Alliance? A Conversation with Jenn Wolff, Manager, federal funding) for assistance to complete Mission United Spinal’s Advocacy Alliance activities of daily living have to choose between the lesser of two evils: Do you The Advocacy Alliance is a grassroots group work less hours, make less money, limit the of wheelchair users who are invested in money you can save and keep the waiver United Spinal Association’s helping our community and improving the services or do you work more hours, make mission is to improve the quality of life for people with disabilities more money, lose waiver services and have quality of life of all Ameri- by fighting for the equipment and policy we to pay out-of-pocket for activities of daily need to live our lives to the fullest. living assistance (which potentially will cans living with spinal cord Why do we need the cost the additional money made)? injuries and disorders Advocacy Alliance? Sounds like a lose-lose. (SCI/D). Membership in Unit- JW: Many of our elected leaders may not JW: According to the report “Priced Out ed Spinal is open to anyone have contact with people with disabilities 2014,” the average annual income of a single and if they don’t hear about our needs and with an interest in SCI/D. individual receiving Supplemental Security concerns, they cannot assist in creating Income payments was $8,995. That’s only For more information on change. We need to remember that elected one-fifth of what the average one-person the benefits of joining, visit leaders work for us, we are their constituents household makes and well below the 2014 and we have to make sure they hear our www.unitedspinal.org or call voices all across the country. federal poverty level. The report goes on to show that in 2014, it was virtually impos- 800/404-2898. How would you assess the sible for a single adult receiving SSI to obtain current state of things? decent and safe housing in the community SPINAL CORD JW: Well, we just celebrated the 25th without some type of rental assistance. RESOURCE CENTER Anniversary of the Americans with Dis- Questions? We Have Answers! abilities Act, and while many things So what can we do 800/962-9629 have changed to increase our access to to effect change? www.spinalcord.org/ buildings, transportation, employment JW: When you hear all these statistics it’s resource-center and more, the statistics show people with easy to see why many people in our com- disabilities have a long way to go before munity feel like they don’t have power or a we have equal access. voice. But I want you to think again. I am WHEELCHAIR MEDIC hoping that along with action alerts and other Expert Wheelchair Repair What’s an example? information on policies affecting wheelchair Fort Totten, NY: JW: According to the last US Census, ap- users, the Advocacy Alliance can help pre- 718/352-1623 proximately 56.7 million people (18.7 per- pare and motivate people to feel empowered. Castle Point, NY: 845/831-2000, ext. 5394 cent) who were not in institutions in 2010 had We want to make you really think about how www.wheelchairmedic.com a disability, when counting those residing in policies affect our community, why it is so institutions, add 4 million more. The Ameri- important that we change the way we think can population is aging, living longer and about power, who has it and what we can do. VETERANS SERVICE OFFICE adding to the disability count. Studies con- We want you to get out and vote and Veterans’ Benefits Advocacy sistently find that disability rates rise with make your voice and ours, heard. We’ll Philadelphia, PA: age while unemployment rates continue to provide information and resources on how to 215/381-3037 or 800/807-0190 decline. Yet according to the U.S. Bureau of M-F 8:30 a.m. to 4:30 p.m. vote, where to vote, how to find out reliable Labor Statistics, only 17.1 percent of people www.vetsfirst.org information about those who are in the presi- with disabilities are employed, compared to dential race and even how to make sure your almost 65 percent of the nondisabled work- polling place is accessible (http://www.eac. CONGRESSIONAL ing age population. gov/making_polling_places_accessible/). LIAISON OFFICE That’s a pretty stark disparity. Together we can make change. Disability Policy Advocacy How are people with disabili- Washington, DC 202/556-2076 ties getting by? Join United Spinal’s Advocacy Alliance JW: Many people with disabilities who live to keep up-to-date on the pulse of disabil- independently in the community and rely on ity advocacy and the issues that affect our physical disability waiver services (usu- community: www.unitedspinal.org/advocacy- ally funded by a combination of state and alliance/advocacy-alliance-messages.

OCTOBER 2015 49 making travel easy for individuals with spinal cord disabilities RAISING A RUCKUS

“Hey, Gov. Role Model, we should be soulmates, but first you've got to have a soul!”

By Allen Rucker Land of the Big Mouth

merica, at least in my lifetime, The disability crowd needs its own user to stand up and belittle chair-using has been the home of the brave Mr. Cat Scratch Fever. To achieve Texas Governor Greg Abbott. “Hey, Gov. and the land of the big mouth. this, I propose the establishment of Tough Guy. You’re a jerk and a loser!” (I One of my first media memories a Leadership School for Young Crips stole that from Trump.) Or, “Hey, Gov. Awas the commie-hating big-mouth sen- where go-getters can learn the tricks of Role Model, we should be soulmates, ator from Wisconsin, Joseph McCarthy, a public incivility. The lesson plan is sim- but first you’ve got to have a soul!” master at waving a bunch of papers into ple: insult, insult, insult. Memorize the Insulting Everyone without a Disability. a television camera and shouting, “Here insult lexicon — loser, nut job, moron, Here’s where the fun begins. “Don’t is a list of 4,000 communists in the State hack, lightweight, and the always popu- stare, dorkhead. I might walk tomorrow Department!” He was a trendsetter. lar “disgusting fat pig.” (You can then but you’ll be ugly forever!” Nondisabled As we all know, because he wants us advance to tongue twisters like “barking people are wusses, losers, jellyfish. The to know, the current biggest big mouth moonbat” and “nattering nabobs of minute they see you, they go into guilt is Donald Trump, but he is only the lat- negativism.”) The power of the public mode. “Hello, my good friend,” they est incarnation of what I would call the insult is not in who you insult, but in whimper, “so good to see you, I don’t “Golden Age of Big Mouths.” Starting your swing-for-the-fences gall. Don’t know you, but here’s $5.” Wait for them with Howard Stern, Rush Limbaugh, just say someone is “weak.” Say he’s a to do something nice, then pounce. and Al Sharpton, not to mention the sissy-face bedwetter. Most people with disabilities seem great Muhammad “The Mouth” Ali, we Professional insulting demands dedi- trained to be meek and mild, to not start now have so many shouters shouting cation and discipline. It was no accident trouble nor point attention to them- over each other’s shouting that there that Hair Trump escalated onto the selves. As a big mouth, do the very oppo- should be a TV awards show devoted presidential stage calling immigrants site. Do start trouble. Someone disagrees to the best of the blowhards. Donald rapists and murderers. He no doubt with you at a party, call them out, loudly, Trump could host. has a staff of insult writers locked in a as a heartless bigoted biped. Always There is a lesson here for the disabil- room, looking for the right occasion point attention to yourself. Start each ity community, especially if it wants to to call Marco Rubio “a beaner from sentence with “I can’t walk,” as in “I can’t be heard beyond the echo chamber of Brownsville,” even though he’s neither a walk but at least I don’t slither around its own, excuse-me-I’m-disabled small beaner nor from Brownsville. like the sniveling sniveler you are.” While voice. To get anywhere in this culture, The course load is heavy. Besides your opponent reels, everyone else will you have to have a human megaphone the usual subject areas of minorities, applaud you for “saying it like it is” and that the media can’t ignore. Take the Hollywood crybabies, and the “lame- having the guts to be “non-PC.” queen of the Tea Partiers, Sarah Palin. stream” media, cracking the books Get on CNN, insult any public figure Nothing can shut her up. Who can would also include: with gusto, and you’ll get your own show ignore someone who says we “should Insulting Other People with Disabilities. called “The No Sniveling Zone.” Then invade Ebola” or send all illegals home Now you’re breaking new ground. It’s mount a presidential bid on the slogan across “the Mexican Sea.” And let’s too bad Rush Limbaugh did that arms- “All Nondisabled People Suck and Should not forget wild man hatemonger Ted waving putdown of Michael J. Fox. Be Rounded Up and Shipped Across The “Obama is a subhuman mongrel” Someone in a chair would have made it Canadian Sea to Canada.” Nugent. On a slow news day, call Ted. much more insulting. Be the first chair Eat your heart out, Sarah Palin.

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Wheelchair fits in side car. I’m a T-8 para- http://asteriasbiotherapeutics.com plegic complete. I have been riding this TO PLACE A CLASSIFIED AD IN NEW MOBILITY bike for 20 years. $25,000. Serious inqui- ries only. Phone 563-259-4428. Located Call 800-404-2898, ext. 7253 Supporters in Iowa. Please leave a message. or email your request to [email protected] Coloplast Permobil X850 Trax Corpus for sale. Print Rates: The Comfort Company Call for details 718-642-6420 • $1.30 per word DiMarco Araujo Montevideo Attorneys at Law • $1.00 per word Berkel Bike – Cycling for All – a hand- KD Smart Chair for USA Members cycle that allows propulsion from both Michigan Auto Law • Boxed Ads - $105 per inch arm and/or legs, allowing riders to get Mobility Funding Group maximum benefit of pedaling within all • Pre-Payment Required: Scootaround VISA, MasterCard, means. The sit is high for maximum sta- Sleepsafe Beds AMEX, Discover bility and easy access. Excellent condition, Strive Medical used only once. Located in NYC. Call: • All Paid Print Classifieds get a Surehands Lift & Care Systems 1 month FREE Web Classified 917-821-5773 or e-mail: akg1948@nyc. Synapse Biomedical rr.com. Bought new for $5,400 and selling Online Only Rate: 1 month = $16 for $4,000 For more information on how you can support United Spinal 3 months = $36 and become a business member, please contact Megan 6 months = $72 Lee at [email protected] or 718/803-3782, ext. 7253. 9 months = $108 WANTED 12 months = $144 Acknowledgements on our website, in New Mobility, in United Used Quickie II. 17” seat. The older the Spinal e-news or any other United Spinal publication should newmobility.com/classifieds better. [email protected] not be considered as endorsements of any product or service.

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

The New Mobility Blog relaunched in August with a whole new cast of fresh voices:

3 RESPONSES TO ‘DO YOU NEED HELP? Alex Ghenis says the phrase “do you need help?” peeves him even more than “Hey, speed racer!” He writes: “People ask me when I’m minding my own business at a café, when I’m doing some activity but obviously not struggling, and even when I’m heading into the bathroom. (I always won- der what kind of help people think I’d need in the bathroom that they, a total stranger, could give).” His suggestions are to be polite, be a little bit sarcastic — “Need help with what, man?” — or be calm and thoughtful. Read it at www.newmobility.com/2015/08/3-responses-to-do-you-need-help and look for Ghe- nis’ follow-up blog, “Asking for Help: 3 Tips.” Ghenis, 27, is a policy analyst with the World Institute on Disability and a C5 quad.

I LOVE G-LOVES WHEELCHAIR GLOVES Palm Springs, Calif., defense attorney and paraplegic Stephanie Arrache writes about the beating her hands take from wheeling around and then gushes about G-Loves, gloves designed for women weight lifters that work wonderfully and fashionably as wheelchair gloves: “I don’t remember exactly how I stumbled across the G-loves, but I am so glad I did! They have so many different color combinations to choose from. Of course, I ordered the most outrageous color I could. No one has ever accused me of being afraid of color. Being a true ‘80s child, I was immediately drawn to the Rad collection. And, as if they weren’t amazing enough, I ended up bedazzling them when I got them. I bought a second pair from the Wave collection, because it looks like shiny mermaid scales on my hand. (Mermaid scales sounds way prettier than fish scales, right??) For the record: I decided those were shiny enough and did not bedazzle them. Arrache suggests ordering them a size larger since they’re very snug. Read more at www.newmobility.com/2015/08/i-love-g-loves-wheelchair-gloves

MY SPRING ‘BREAK‘ (OR TRY TO AVOID GETTING HAMMERED, OK?) James Barry shares a cautionary tale for all of those with MS who, even after living with the disease for decades, may have difficulty telling a broken bone from a heart attack: “I have had multiple sclerosis for 35 years, not walked for the past 12, and do not have much sensation in my legs. I suppose, if I had been able to walk or bear weight on my leg, I might have been screaming another tune,” writes Barry, a long-time disabilities advocate and former Verizon corporate manager. He presented with heart attack symptoms, so his wife called dialed 911. “While in the ambulance, I lost consciousness again and they performed countless tests to find out why I passed out and why I was losing blood pressure. We got to the hospital about 10 p.m., where the ER staff did more cardiac tests. The results revealed a typical healthy runner’s heart/lung profile but could not explain the dropping blood pressure and loss of blood count. They admitted me to the cardiac ward where I spent a fitful night having blood drawn and being monitored every 30 minutes. It was over 24 hours before a broken leg was diagnosed.” Read the rest of the story at www.newmobility.com/2015/08/my-spring-break

56 NEW MOBILITY

THE F5 CORPUS® VS STAND AND DRIVE Jason Dufour Experience it at permobil.com Permobil user since 2009