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life beyond wheels

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*RX Only. Federal (USA) Law restricts this device to sale by or on the order of a physician or other healthcare practitioner licensed under state law to order this product. The Hollister logo, VaPro and VaPro Plus are trademarks of Hollister Incorporated. © 2014 Hollister Incorporated 922739 CONTENTS VOLUME 26 NUMBER 262 July 2015

life beyond wheels

FEATURES

13 AMERICAN COWGIRL Amberley Snyder was born to ride horses. Becoming paralyzed at the age of 18 has only fed her lifelong passion. BY NATALEA WATKINS

21 USA ROAD TRIP Two Harvard freshmen drive cross-country — from San Francisco to Boston — to get a firsthand view of accessibility. BY IAN RUDER

26 ADA PHOTO ALBUM As part of our ADA Celebration coverage, 20 photos capture key moments of ADA history, many taken by photographers with disabilities.

COVER STORY 25 YEARS OF ADA 26 A comprehensive look back at the law that changed our lives for the better: JOSIE BYZEK documents the people and the issues that led to the writing of the ADA; JAMES WEISMAN recounts how the law itself has evolved from its inception to today; NM READERS tell us how their individual lives have changed as a result of the law; and the NM STAFF offers their take on what remains to be done.

Cover and Contents Photos by Rachel Bridges/disABILITY History Museum

DEPARTMENTS

4 BULLY PULPIT 44 UNITED SPINAL NEWS 5 CONTRIBUTORS 48 PARA/MEDIC 6 LETTERS 50 OUTDOOR TRACKS 8 NEWS 52 ERVIN 10 SCI LIFE 55 CLASSIFIEDS 43 SPOTLIGHT 56 CRIP BUZZ BULLY PULPIT

life beyond wheels JULY 2015

NEW MOBILITY IS THE MONTHLY MAGAZINE OF

PRESIDENT & CEO: JOE GASKINS VICE PRESIDENT OF PUBLICATIONS: JEAN DOBBS

EDITORIAL Winning Hearts and Minds EDITORIAL DIRECTOR: JEAN DOBBS I was thrilled when the ADA was imple- millions retrofitting the arena. EDITOR: TIM GILMER mented in 1992. After more than 25 years About the same time, I took in a movie MANAGING EDITOR: JOSIE BYZEK SENIOR EDITOR: IAN RUDER as a wheelchair user, I was sick of fighting at a newly remodeled multiplex and found SENIOR CORRESPONDENT: BOB VOGEL stairways, inaccessible restroom stalls, and that my only choice of seating was in the job discrimination. But it didn’t take long to first row, about six feet from the screen. making travel easy for individuals with spinalEDITORIAL cord disabilitie SUBMISSIONS:s [email protected] discover that very few nondisabled people I could not even physically watch the knew the law existed. And most of those movie or read the subtitles. Like Allen, the who did know thought of the ADA as an theater chain’s owners ignored warnings CUSTOMER SERVICE optional “special consideration.” and complaints. I sued, along with others, One of those people was Paul Allen, the and after years of appeals the Supreme Toll-free 800/404-2898, billionaire owner of the Portland Trailblaz- Court forced compliance. Prior to the trial, ext. 7203 ers pro basketball team. In 1993, Allen I wrote a story about the blatant disregard began construction on the Rose Garden, of the ADA and our civil rights and sent it ADVERTISING SALES the Trailblazers basketball arena. Local to the only magazine I could find that was disability advocates had pointed out prior interested in both disability discrimination 718/803-3782 to the beginning of construction that mul- and quality production. That was my first NATIONAL SALES MANAGER: tiple ADA violations would follow if it went New Mobility story as a freelancer. MEGAN LEE, EXT. 7253 AD MATERIALS: forward as planned. Allen, normally an A year later I wrote my first cover story, DEANNA FIKE, EXT. 7250 agreeable man, ignored their warnings. an exposé of a wealthy coastal community On my first trip to the Rose Garden I sat in Oregon whose mayor and city council re- PRODUCTION in the only space available — at the very fused to acknowledge a disabled resident’s PRODUCTION MANAGER: DEANNA FIKE top of the arena in the “gimp ghetto” — no complaints about inaccessible sidewalks restrooms or concessions, just a concrete and businesses, one of them owned by the CIRCULATION pathway with rails. My daughter and I had mayor. The resident sued, and the city coun- CIRCULATION MANAGER: to bend forward and peer over a clear plas- cil chose to spend hundreds of thousands of BEVERLY SMITH tic “safety railing” just to see the postage dollars to combat the suit rather than spend CIRCULATION COORDINATOR: stamp-sized court hundreds of feet below. the money to remedy the lack of access. MARIA KURTZ I was angry. Their defiant position was supported by the A local attorney, Bob Pike, also a wheel- national Chamber of Commerce. POSTMASTER: Send address changes to New Mobility, 120-34 It is an understatement to say the ADA Queens Blvd, #320, Kew Gardens NY 11415. chair user, was angrier. He had bought Subscription rates: $27.95/year; $35.95/year in Canada; season tickets — excellent seats at $100 a encountered rough sledding in the begin- $67.95/year international via airmail. pop — but couldn’t see the game when ning. Even now, as then, the struggle is not New Mobility (ISSN 1086-4741), Volume 26, Issue 262, is published monthly by United Spinal Association. everyone stood up and blocked his view only about access, it is also about good will. Copyright 2015, all rights reserved. Reproduction without permission of any material contained herein is strictly whenever something exciting happened, Persistent advocacy has won many battles, prohibited. We welcome comments; meaning almost the entire fourth quarter. but the true victory will come when we win we reserve the right to edit submissions. Pike sued, as did the Department of Justice, the hearts and minds of the public. Periodicals postage paid at Flushing, NY and additional mailing offices. and eventually Allen had to spend tens of — Tim Gilmer www.newmobility.com

4 NEW MOBILITY CONTRIBUTORS life beyond wheels JULY 2015

A key negotiator with Congress in drafting and supporting pas- CONTRIBUTING sage of the Americans with Disabilities Act, James Weisman has EDITORS worked to ensure the civil rights of people with disabilities and enhance their quality of life for more than 30 years. He is a long- MICHAEL COLLINS time senior vice president and general counsel of United Spinal MIKE ERVIN Association and was also a founding member of the board of ROXANNE FURLONG directors of the American Association of People with Disabilities. RICHARD HOLICKY In 2004, he was presented with the Universal Accessible PRISCILLA MALTBIE Transportation Award by United States Transportation Secretary ALLEN RUCKER Norman Mineta. He resides in Oyster Bay, N.Y. ROBERT SAMUELS ERIC STAMPFLI ELLEN STOHL Debbie Johnson has been a physical therapist for 15 years in BOB VOGEL rehab settings from North Carolina to Alaska. She has served on LOREN WORTHINGTON North Carolina’s Spinal Cord Injury Association’s board for 10 years, helping start the Raleigh Sidewinders Quad Rugby team and contributing to the chapter newsletter. Outside of work, her passions involve anything active, outdoors, and furry/four- COMMUNITY PARTNERS legged. She also occasionally dabbles in welding. She currently makes her home in the mountains of Asheville, N.C., with her KIM ANDERSON dogs, Tex and Molly, and cat, Willis. CHRISTIAAN “OTTER” BAILEY MARTY BALL FINN BULLERS TIFFINY CARLSON A disability rights attorney and professional photographer, Mary LAWRENCE CARTER-LONG Lou Mobley graduated from Duke Law in 1990 and began enforc- ing the ADA when it first went into effect. A person with a disability RORY COOPER herself, she lives with major depression and anxiety. After more JASON DASILVA than two decades of disability rights enforcement, she founded the DEBORAH DAVIS ADA Image Project as a photographic tribute to disability advocates TOBIAS FORREST and to celebrate the changes in American society that allow people JENNIFER FRENCH with disabilities to lead richer, fuller lives. The Project’s coffee table ALLISON CAMERON GRAY book will be available this month. Mary Lou lives with her family in MINNA HONG Golden, Colo. Contact her at [email protected]. MARK JOHNSON GARY KARP NANCY BECKER KENNEDY Lawrence Roffee was the executive director of the United States BRITTANY MARTIN Access Board for two decades, beginning in 1988. During his LINDA MASTANDREA tenure he oversaw considerable expansion of the Board’s mission LYNN MURRAY and services and spearheaded efforts to make the Board a lead- ASHLEY LYN OLSON ing resource on accessible design both nationally and abroad. He SCOTT RAINS retired from the Access Board in 2008 to pursue his passion for TEAL SHERER photography. Today he is committed to using photography to MITCH TEPPER help improve the image of people with disabilities, donating his REVECA TORRES time and work to local organizations promoting the rights and ANTHONY TUSLER empowerment of people with disabilities. Roffee is a paraplegic KARY WRIGHT from a gunshot wound while serving in Vietnam in 1970.

JULY 2015 5 STAGING A LIFE The Transformation of Regan Linton

LETTERS life beyond wheels If there is any justice at all in ‘the biz,’ I’m convinced Regan Linton will have an

extremely successful career. newmobility.com MAY 2015 $4

Regan Shines have a hard time and ask for help. All too only could they not “eliminate” properly, What an incredible article about a very, often, someone will see him struggle for there would be no coverage on products very talented actor [“The Transformation of a millisecond, jump in with, “Do you need for them to stay dry, clean or bathe properly. Regan,” May 2015]. I’ve taught and directed help?” — at the same time giving me a dirty Mary Mullenax actors with disabilities for decades. Regan look for not helping him! He’s got brain inju- Linton is, by far, gifted with the most talent ries, as well as one leg amputated, and con- Managing Bladder Spasms I’ve ever encountered. I came across her at a tractures in the other leg. “No, lady, he needs I read with interest your article in the May to figure out how to do things himself. He’s SAG/AFTRA meeting where her personality issue of New Mobility, “Options to Manage a big boy, and he will figure it out!” brightened the room. If there is any justice Bladder Spasms” [ParaMedic, May 2015]. Valerie Misch at all in “the biz,” I’m convinced she will have The first half dozen years or so of my life as Canada College an extremely successful career. someone with paralysis, my bladder man- John Mahon Useful Recipes agement consisted of a condom catheter (glued on with surgical adhesive and white Thank you for these do-it-yourself recipes Blown Away duct tape) followed with regular dosage of I was blown away by Regan LInton’s per- [“Git ‘R Done,” May 2015]. You [author bladder infections. formance as Aldonza in Man of La Mancha. Roxanne Furlong] are gifting the readers I’m not sure if my urologist at Kaiser Hers was head and shoulders above Mary with some very useful recipes. I use an Permanente invented or just knew about Elizabeth Mastrontonio’s that I saw on expensive doctor’s prescription for Candida Broadway. I am so happy to hear she is at that doesn’t really work, so I am happy to the system where you dissolve one 5 mil- the Oregon Shakespeare Festival. Best of find one I can afford. The shaving and skin ligram tablet of Ditropan in 50 milliliters of luck to her in her career! softener uses ingredients I already have — tap water and inject it back up into your Eric Rivedal even better. bladder after cathing. For more than 25 Bess Glenn years I went condom-free, and for the most When Help is Not part leak-free and infection-free. A serious Don’t you love it when people push the Message to Medicare point in the system’s favor is it had almost door open for you but stand outside the After 10-plus years of aggressive digital stim- no side effects. However, I had to be very door so you have to navigate around their ulation due to a spastic anal sphincter, I am organized when cathing outside the home feet [“Help!” May 2015]. Nine times out of experiencing near rectal prolapse. Not pret- (I had to bring syringes prepared with water 10, their opening the accessible door for ty. I figure I can forward Medicare a photo and Ditropan, which usually caused ques- you makes it more difficult than if you did it of my bung hole [“Bathroom Equipment: tions when going through the TSA security). Not Medically Necessary?” May 2015]. Then yourself. I just say “thanks,” but I wish I had A year and a half ago I started doing more backbone to say, “This is an automatic let them tell me that bathroom equipment Botox. I would say this is as close to being door and you are making it more difficult for isn’t medically necessary. Consider this an nondisabled as I’ve been in 33 years. For me me to enter!” unapologetic plug for Coloplast’s Peristeen there are no side effects whatsoever, other Bob Drinan product [see ParaMedic, Jan. 2015]. than obviously my body doesn’t like it when University of Chicago Lynn Murray Placerville, California the bladder overfills (I’m a C6-7 quad and I More “Help” start getting dysreflexia symptoms). But I’ve My favorite is when my 34-year-old son and Ludicrous Policy been having them for so long even though I are at the gym for his workout, a routine It is ludicrous that the means to shower or I’m not supposed to that I can use them as a he knows very well, and he’s reaching for toilet are not considered basic needs by signal/reminder to cath. But one side effect I something to get him started on a stretch, Medicare. At one time funding was even do not have is any leakage. I can ignore the or getting himself on a machine. I’m there, being denied to people with disabilities dysreflexia for half an hour and still not leak. talking with him, always ready if he should who required incontinence products! Not Bruce Hammer, CEO, Nuprodx

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NYC Lawsuit Calling for Accessible the earlier lawsuit is detectable warnings Sidewalks to Proceed on the sidewalks for blind people.” “It has been 25 years since the ADA On June 1, U.S. District Judge George 75% PERCENT OF 1,066 CURBS SURVEYED IN became the law of the land, yet we’re still Daniels denied a motion by New York LOWER MANHATTAN WITH SAFETY HAZARDS waiting for New York City to comply with City asking for dismissal of a class action — CIDNY lawsuit calling for accessible sidewalks its requirements and make sidewalks safe and pedestrian routes. for all of us,” Susan Dooha, director of CIDNY, said in a statement. “This litigation [originally filed July 30, This is not the first time New York City 2014] seeks to require the city to make has been sued over inaccessible walkways. changes to its sidewalks that it should In 2002, the Bloomberg administration set- First Ever Accessible Yoga have made decades ago,” says Daniel tled a lawsuit filed by United Spinal in 1994, Conference Brown, a partner at Sheppard Mullin agreeing to complete curb cuts by 2010. The first Accessible Yoga Conference will Richter & Hampton, which, along with Even though a sidewalk has a curb cut, that take place Sept. 12-13 in Santa Barbara, Disability Rights Advocates, is represent- doesn’t mean it’s usable, says Disability Calif. “The mission of the conference is to ing the Center for Independence of the Rights Advocates Attorney Rebecca provide a forum where the yoga commu- Disabled in New York. The suit focuses Rodgers. “DRA has received complaints nity can come together to connect, share on fixing sidewalks and pedestrian routes from the disability community about, in and support those who wish to expand below 14th street in Manhattan — an area certain cases, the lack of curb cuts and in access to the yoga teachings for people that includes City Hall, Wall Street, the 9/11 other cases the usability and condition with disabilities,” says one of the confer- memorial, the courts and the departure of curb cuts that do exist,” says Rodgers. ence organizers, Patrice Wagner. Wagner point for the Statue of Liberty. “Another aspect that was not covered in will be writing a feature article for a future People in the News: Katherine Beattie, Shredder Extraordinaire

atherine Beattie is shredding the wheelchair motocross those sports anymore,” says Beattie, 29. scene, finishing eighth overall in her first WCMX World While in college, she saw a picture of a wheelchair user drop- KChampionships, held in April in Grand Prairie, Texas. ping into a quarter pipe. “I knew one day, when I was able to Beattie, who has CP, is get my own wheelchair, that was something I would do,” she the first woman in the says. Two years ago, Beattie began using a Box wheelchair daily world to land a back- to conserve her energy, and it wasn’t long before she headed to flip in a wheelchair. the skate park. The La Cañada Riding for Team Box, Beattie has quickly risen to become Flintridge, Calif., one of the top women in the sport and the first American woman spent her woman invited to the second WCMX World Championships. childhood skate- Athletes were judged on how consistently they stayed on their boarding, surfing wheels, creativity and amplitude. and snowboarding “I was able to do two really clean runs in the finals and actu- until a surgery to ally ended up in eighth place overall,” says Beattie. “I was so lengthen her ham- happy to have placed that high and to be top 10 in the world strings inadvertently and the number one girl overall.” left her muscles As thrilled as Beattie was with her performance, she wants to weak. “I didn’t have see her sport on the international stage. “I think everybody who the balance or stam- rides WCMX would love to see it one day in the X Games along- ina to participate in side skateboarding, BMX, Motocross and all the other sports.” Photo by Shutterschwab

8 NEW MOBILITY issue of NM on how yoga instructors with “We went out of our way to work with the focused on,” says Linton, a NYC native. “I’d disabilities are joining together. city and state so that we can operate fair like to commend Barnard for the recogni- The two-day program at the Santa and square,” says Leap CEO Kyle Kirchhoff. tion of disability activism and disability in Barbara Yoga Center will feature a keynote “In the meantime we are able to operate the arts … through this award.” speech by Matthew Sanford, renowned legally and in our opinion, are helping Public perception of disability has been yoga instructor paralyzed from the chest people get out of private cars and back influenced by Linton’s work, and her lat- down. The workshops are designed to onto mass transit, which I think we can all est project, Invitation to Dance, continues appeal to beginners, more advanced yoga agree is beneficial to the city.” in that tradition. The film, directed and practitioners, and instructors alike. For The company came under fire from produced by Linton and Christian von more info, go to www.accessibleyoga.org. disability advocates in March after it pur- Tippelskirch, follows Linton’s life as she For a 10 percent discount for New Mobility chased wheelchair-accessible buses, then transforms from a young disabled woman subscribers, use the code “Mobility.” removed all of the lifts and tie-downs. into a seasoned disability activist. “We use Leap answered its critics with a promise to my personal story as a point of entry to California Shuts Down Leap Transit restore full accessibility on the one bus in tell the larger historical narrative of the rise On May 11, San Francisco’s luxury bus its fleet that still had a working lift. of the disability rights movement and the company Leap Transit was ordered by the emergence of disability culture,” she says. California Public Utilities Commission to Simi Linton Awarded Medal of Numerous barriers have fallen for people stop operating because the start-up com- Distinction from Barnard College with disabilities, but Linton says many pany did not have the proper permits. Simi Linton, one of America’s foremost remain. “There’s a failure of imagination in The cease-and–desist order came as experts on disability and the arts, was this country in terms of seeing disabled peo- Leap was completing the state’s permitting honored with a Medal of Distinction from ple as artists of all stripes,” she says. Linton process. Leap had received a preliminary Barnard College during spring commence- blames the education system for having license, but failed to provide proof of insur- ment on May 17 at Madison Square Garden. little vision for the participation of kids with ance, complete mandatory bus inspections, “I was very moved … very excited that disabilities in the arts. She says they grow up conduct drug and alcohol screenings for not only was I being nominated but also not seeing the arts as an avenue for viable drivers, or ensure wheelchair accessibility. that the work that I do on disability issues careers, and as a result, are not adequately Leap disputes the CPUC’s decision. and activism and the arts were particularly represented in the media.

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JULY 2015 9 SCI LIFE

By Tiffiny Carlson

Now That’s a Cool Digit “ I regained It took recently injured mechanical engineer Josh Smith, a C5-6 quad from Richmond, Va., significant strength to come up with one of the smartest solu- and movement in tions ever created to help solve one of the most frustrating aspects of life with lower- my arms. Mainly level quadriplegia — limited dexterity. He calls it the Sixth Digit. my biceps, but also The wearer puts on a bendable ring with a lot of return in core an inch-long metal stem (and topped with a metal mesh tip) to type easier and faster, strength.” use cell phones easier, even hit the buttons on a microwave easier. Turning to Veganism and Stem Cells And it can still be worn while push- Growing up, Wes Bandemer, 25, return below his level of injury. “I ing a wheelchair. Morgan City, La., was all about regained significant strength and Sleek, highly func- staying physically active. “I was movement in my arms. Mainly in tional and beyond always doing something physi- my biceps,” he says, “but also a useable, it’s no cal every single day,” he says. lot of return in core strength and wonder Smith’s “I didn’t have a computer and even some flickering in my toes.” Kickstarter project raised more than the rarely touched video games,” and Bandemer says he would $8,000 in backing it needed this past March then I lost it all, not even being have seen even more return if he to start production — $9,140 overall. able to shrug my shoulders.” hadn’t developed a decubitus Production of the Sixth Digit began in A C3-7 incomplete quad, ulcer that he thinks “preoccu- July. To learn more about the Sixth Digit and Bandemer was injured in a moto- pied” the stem cells into healing to purchase one yourself, visit this link: cross race in 2005. “I held the gas his bed sore instead. He hopes www.kickstarter.com/projects/ a little long on a right sweeping to return next year, but needs to 632031561/sixth-digit-stylus-ring-for- turn before the finish line jump,” raise $39,000 to make it happen. everything-a-lifestyle he says. He flew off his bike, shat- He also made a huge change tering his C4 vertebra. to his diet — he became vegan. For someone so physical So far he’s lost weight and takes before his injury, he’s determined New Injury Help to heal, and even though it’s 11 only one pill each day for spasms. years later, he’s still in recovery “I fully attach it to myself and am The New Perspective Foundation has one purpose — to help the loved ones of people mode. Bandemer first traveled betting my life and recovery on with new spinal cord injuries visit them with- to Germany for an adult stem it. When I’m walking again, I’ll out financial risk. The foundation will pay for cell bone marrow transplant. be praising the vegan diet as a travel expenses for those living in Ohio and Unfortunately, the procedure necessity.” Florida, and hopes to expand their reach in the didn’t produce any results. A never-say-die hopeful spirit, coming years. For more information, see www. Next he traveled to India for Bandemer is a true soldier for newperspectivefoundation.org and the story embryonic stem cell injections, the cure. Visit his site at www. of the founder on page 46. and it was there he saw the first wes4one7.com

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12 NEW MOBILITY www.mv-1.us AMBERLEY SNYDER: American COWGIRL

BY NATALEA WATKINS

mberley Snyder just can’t get the click of a seatbelt off the playlist A of her life. On Jan 10, 2010 she forgot to fasten hers after stopping for gas in Rawlins, Wyo. Ten minutes later, her truck rolled and she flew through the air and wrapped around a fence post. Doctors told the 18-year-old that the chances she would walk again were “slim to none, with more to the none,” due to a T12 spinal cord injury. Paramedics told her, “If you’d had your seatbelt on, you’d have your legs.” That was the first time she cried. “I told my mom this one mistake has cost me my whole life.” Her mom replied, “We can’t go back. Your legs are still attached. We’re just going to work on it from here.” And so she did. Today Snyder flies through the air on the back of a horse named Power, thanks to a seatbelt and three other straps she’s rigged on her saddle. She competes as a barrel-racer and breakaway roper. She is convinced she will walk again but lets her horses be her legs in the meantime. As the post on her Facebook page pro- claims, “Two feet move your body. Four feet move your soul.” “When I’m on my horse, I can leave my wheelchair at the trailer and I am free,” she says. “It’s a moment of complete happiness.” Snyder was a member of the Utah State University Rodeo Team and is in the top five in her region. She had her sights set on qualifying for “When I’m on my horse, I can leave my the Collegiate Rodeo finals in Wyoming this year — coincidentally to be held in wheelchair at the trailer and I am free. Casper where she was life-flighted after the accident and doctors told her she It’s a moment of complete happiness.” wouldn’t ride again. However — believe it or not — she didn’t qualify because her horse got hurt and had to go to re- Photo by Siri Stevens from The Rodeo News

JULY 2015 13 hab. Thankfully, he’s recovering and they are hard on the rodeo circuit this summer. Those doctors all but laughed at her triple goal: Walk, Ride, Rodeo — set from her hospital bed. They certainly didn’t envision barrel racing at a competitive level. But the girl who began barrel racing at age 3 felt they were missing the point: “Barrel racing isn’t something I do,” she says, “It’s who I am.” Her mom, Tina, remembers thinking, “They just don’t know my Amberley.” BORN TO RIDE Amberley’s interest in horses began so early she would point to the horse on the diaper wipes and say, “Me ride” as an infant. So Tina would draw the barrel pattern on her daughter’s tiny hand and the rest became history. The family finally found a place that would let a 3-year-old ride. She began winning buckles at age 7 after the Snyders moved to Utah and Snyder got her own Palomino barrel horse. Her mom says, “She had such God-given talent and balance, she competed bareback until she was in high school.” In fact, the month before her accident, Snyder made the High School Rodeo Finals and then won an All-Around World Cham- pionship, two saddles and 11 buckles at the Little Britches Rodeo in Colorado. Those victories put her at the top of high school rodeo stars and on the road to Denver that fateful day in January. She’d gotten a job working the Denver Stock show and left Utah Amberley Snyder has been earning buckles at rodeos since at 4:30 a.m. to get there. She never made it. Instead the teenager she was 7 and rode her first horse when she was 3 years old. ended up in surgery and then in rehab, demanding a saddle. Barrier Free Lifts To meet the individual’s needs

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14 NEW MOBILITY Her mother ran out the front door and drove seven hours to the event. She was and is. 37,000 votes later, Snyder was in! her bedside when “that call that no parent wants to get” came in. “I don’t believe in counting my chickens before they hatch,” She passed Amberley’s totaled truck by the side of the highway says Snyder. “I don’t think it hit me until I was sitting in Nash- still two hours from the hospital. She saw a hunk of her daugh- ville doing a television interview that I was going to be riding ter’s long blonde hair hanging from the driver’s window and against my idols in Texas! I was star struck. I don’t even have my knew the news would be bad. Amberley had just gotten out of pro card yet.” surgery when Tina pulled into the Casper hospital parking lot. The American turned out to be a “magical, once in a lifetime “The doctors told me there was no hope,” she says, “that Amber- experience,” according to Snyder, who slept about 12 hours in ley would be paralyzed the rest of her life.” the four days in Texas and also had to deal with icy roads and the Tina didn’t leave the hospital for weeks despite five other kids largest crowd her horse, Power, had ever seen. Their 15.3-second at home. She says she still fights the urge to surround her daugh- run was only .6 of a second slower than the winning time. But ter in bubble wrap to keep her safe. But she tells Amberley, “Hard she rode away with much more than prize money. work beats talent when talent doesn’t work hard.” And Tina First, Busby Quarter Horses agreed to donate $25,000 to knows just how hard Amberley works to “make it look easy” to her favorite charity if she won the fan exemption. The money overcome a hundred obstacles every day. went to “Hope Counts,” a fund to help the families of injured Snyder defies odds as fiercely as she rides for home after rounding that third barrel. In March 2015 she won a fan exemp- junior rodeo participants. Then her share of the sponsorship tion to compete against the top barrel racers in the world in the patch auction netted $27,000 — enough to replace the truck that $2.5 million “The American” rodeo at Texas Stadium. It was all has pulled her horse trailer nearly 250,000 miles. The reigning thanks to an accidental fairy godmother named Andrea Busby. World Champion Barrel Racer, Fallon Taylor, challenged oth- Andrea had never met Snyder. She’d seen her across the arena ers to contribute towards an Action Trackstander, a standing at barrel races and read about her in the Barrel Horse News. So she track wheelchair that will allow Amberley to tack her horse and posted on Facebook that Snyder was just the kind of rider the fan function in arenas. The custom chair arrived last month, fully exemption was made for. Overnight hundreds, then thousands paid for by the donations. Finally, RFD-TV, the sponsor of The agreed. Andrea herself was stunned and figured she’d better call American, contributed $100,000 to set up an Amberley Snyder Snyder’s mom to make sure it was OK. “The American” organiz- Scholarship fund for the National FFA Organization. And Sny- ers were a little concerned as well. They wanted to make sure Sny- der has been racking up the air miles between Texas and Utah der was a “real competitor” in order to preserve the integrity of where she’s now in high demand as a motivational speaker.

JULY 2015 15 pers in her cowboy boots to accommodate curling toes, and then HER SELF-DISCIPLINE: braces to help with contracture, and finally, a cast after surgery “ALMOST SCARY” for the ankles and toes. Mostly it was a matter of time, since she had to feed horses and clean stalls before class. The frantic pace wasn’t much slower at home in Utah. Amidst ro- Power, Wrangler — her roping horse — and now Legacy, deos, riding and speeches, Snyder was a full-time college student a young horse she’s training, board about seven minutes away doing student teaching. She taught classes in Greenhouse, Live- from her apartment. She found the place by going door to door stock, Leadership and Food Science, was an advisor to the FFA until someone agreed to take her “boys.” Feeding, watering and chapter and coached the Horse Evaluation Team, which placed cleaning stalls goes fast, but if she has to hook up the trailer, she’s second in the state. Snyder graduated from Utah State University in for a marathon right at the start of the day: backing the truck on May 2 with a 3.85 GPA and a scholarship for grad school. She while dragging the wheelchair — which is wedged between the hopes to become a school counselor because she never met one open driver’s door and the truck frame — as she inches back, T h e S a f e , P r awho c t i c a ldidn’t love their job. hopping in and out of the wheelchair to check whether she’s a n d C o n ve n i e n t wHer a y t o college roommate, Emmy Peterson, has known Snyder lined up with the hitch. It’s much faster with a partner, and Sny- t r a ve l wh e r e ve r a n d wh e n e ve r yo u wsince a n t . high school, before the accident, when they were both der swears she’s learned to ask for help, but sometimes she has to on the Utah FFA state officer team. Snyder was state president. be independent. N o m o r e wo r r i e s a b o u t h a vi n g a c c e s si b l e Peterson calls Snyder “the feistiest, most determined person I The juggling act goes on all day and into the night. At Pres- fa c i l i t i e s. know. Most days I don’t believe what I’m seeing. She gets tired ton High School, one of her students welded together a ramp in

 but she just keeps going. Her self-discipline is almost scary.” shop class so she could get into the teaching greenhouse. After Different models to meetPeterson forgets to mention Snyder’s wheelchair when she classes, she tries to ride all three horses and often has speeches.  specific needs! Simple to assemble;talks no about her friend, but her senior project for agricultural en- She admits not a day goes by that her butt doesn’t hurt before  tools required. gineering was to build a mechanical horse on a lift to enable her the day ends. She tries to find even 20 minutes to get out of the  Safe and easy to use. roommate to practice breakaway roping from the proper angle. chair, but it doesn’t always happen. She prioritizes an hour a day Seat and footrest heights Snyder’s fierce discipline starts early every day. Peterson in her standing frame/strider. “It’s a great time to catch up with  are adjustable. Casters have “total-lock” says the flying waist-length“GO-ANYWHERE” blonde hair dries really fast Chairsand my favorite TV shows like Grey’s Anatomy, Survivor and Vampire  brakes. that blinding smile “just is.” Snyder hitches on jeans one hip at Diaries,” she insists. She tries to get plenty of sleep. In fact she says Lightweight and durable, she loves to sleep but has to wake up every two hours to turn and high-quality aircraft-grade a time in her chair. She actually has an endorsement contract  aluminum. with Cinch jeans but says she wears hers really loose. She put zip- relieve pressure on her skin. She tolerates muscle spasms, nerve Compact, convenient, and  PORTABLE! Won’t Rust or corrode;  easy to clean. Virtually maintenance- For Home AND On-The-Road  free. Cushions are available in (3) colors and remove VA contract  easily for cleaning. Optional accessories V797D-30180 include: wheeled custom travel bag, positioning belts, slide-out commode tray, 2-way adjustableThe Safe, Practical and Convenient way to GO-ANYWHERE Chairs headrest, and upgradedtravel wherever and cushions! whenever you want. “When Ya Gotta Go, We Go With Ya!” No more worries about having accessible facilities. “GO-ANYWHERE” Chairs www.goesanywhere.com DifferentFor modelshome to AND meet on-the-road; [email protected] When ya Gotta Go, We 800-359-4021 Go With Ya!” • Safe, Practical, Convenient, specific needs!  Simple to assemble; no Portable tools required.  Safe and easy to use. • Won’t rust, easy to clean.  Seat and footrest heights are adjustable.  Casters have “total-lock” • Simple to brakes. assemble;  Lightweight and durable, Come See high-quality aircraft-grade no tools Our New aluminum.  Compact, convenient, and required. PORTABLE! Ultralight  Won’t Rust or corrode; Different models • Numerous easy to clean. “Sport”  Virtually maintenance- to meet optional free. Model!  Cushions are available in specific needs! accessories (3) colors and remove easily for cleaning.  Optional accessories include: wheeled custom travel bag, positioning www.GoesAnywhere.com | [email protected] | 800-359-4021 belts, slide-out commode tray, 2-way adjustable For home AND on-the-road; When ya Gotta Go, We Go With Ya!” headrest, and16 upgraded NEW MOBILITY cushions! www.goesanywhere.com [email protected] 800-359-4021

Custom wheeled travel case “For home AND on-the-road; When ya Gotta Go, It'll Go With Ya!" available. pain and headaches. She chugs water and cranberry juice and constantly takes cranberry pills to fight pesky UTIs. Cathing and rodeo arenas are not a match made in heaven. THE PERSONAL COST Snyder has paid a price for pushing it the way she does. To- day, there are ROHO cushions on both her barrel and roping saddles. But when she was just adding straps in the early days of being filled with joy to be riding again, she literally rode her hide off. The first pressure sore came in September 2011. By December it became clear that she needed surgery, but the doctor didn’t think it was that serious and scheduled a follow-up after the holiday. On Christmas Eve, Amberley texted her mom to come upstairs. Tina says she will never for- get the smell of infection that hit her from the doorway. The situation had become life-threatening. They rushed a shaking Amberley with a 104-degree temperature to the hospital. “She couldn’t even sit at an incline for seven weeks,” said her mom. With that one exception, she is determined to let nothing slow her down. A recent Facebook post shows her schedule hasn’t hit downshift:

What a weekend!!! Twin Falls for College of Southern Ida- ho’s college rodeo! Power and I ended up second in the average!! We got into Logan, Utah, at 3 a.m. due to the time change When finished with grad school, Snyder hopes to become a and left at 3:30 a.m. for the airport to fly to Texas! I was able to school counselor.

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JULY 2015 17 speak at the AQHA foundation luncheon and then fly right back! a week. She considers her ability to motivate people the biggest Just got to Utah and am going to speak at a fireside to finish blessing of her accident. Her first speech — the retirement ad- out the weekend! dress as state FFA president — just months after her accident — resulted in an email from another Utah FFA member. The student had planned to kill himself right after the FFA State TH E PAYO FF Convention. Hearing her tell her story, he changed his mind and Amberley is something of a social media queen with nearly wrote her instead. 115,000 fans on Facebook. She answers every question and e- All those speaker fees also pay for her horses. Snyder won mail, tweets and has her own YouTube channel. She has posted scholarships to pay for school, but says the horses, their feed, a “Wheelchair Wednesday” video on her Facebook page weekly board and expenses are her responsibility and she speaks to earn for the past two years. The topics range from using the ladder their keep. on her trailer to get on her horse to skeet shooting from a chair. “Sure, the accident changed me,” she says. “I value my fam- She demonstrates the series of straps and bands that keep her ily more. I can see beyond horses, and I had to face up to who I mounted as she flies around barrels and ropes calves. But she could be if I never won another buckle or saddle.” She says she also admits there’s no simultaneous quick release system for the was asked recently if she would trade all the accomplishments six different restraints and discourages others from duplicating since the accident to be able to walk and ride like before. From her it. If her horse were to go down she says, “I’m all in.” Her mom new perspective she sees as many blessings as bumps in the road. admits she has taken heat for “letting” her daughter ride in such “I am a firm believer that everything happens for a reason,” a dangerous rig. “I hold my breath,” says Tina, “but she was dy- she says. “No matter what, only you get to choose your attitude ing just sitting in that chair. How could I stop her?” every single day, and I choose to have a good one.” Snyder says she does try to assess the situation and find the safest way, but she shows up to win, not just compete. So she rides and rodeos and firmly believes she will walk again. She says she has regained the use of some of her inside View Amberley Snyder’s “Wheelchair Wednesdays” calf muscles and credits riding for the progress. She’d love to try on her YouTube channel at www.youtube.com/user/AmberleySnyder FES and an exoskeleton someday. Meanwhile, the muscles she and join the nearly 115,000 fans who’ve “liked” her on Facebook at uses most are her vocal cords — speaking two to three times www.facebook.com/pages/Amberley-Snyder/220997234712375?fref=ts.

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AllTrack_Pub_Juin_2015_02a.indd 1 2015-05-28 12:51 PM CROSS-COUNTRY :ROAD TRIP USA BY IAN RUDER

Cynthia Cheung,You-Myeong Kim, Brad Riew and Kunho Kim toured 20 cities in 50 days.

n early 2014, Harvard freshmen Kunho They quickly realized that such a trip New York — and got to fundraising. Kim and Brad Riew threw a giant map would take a wee bit longer than their Over the next few months the four- I of the United States down on the floor college summer afforded them, while some hammered out the logistics, ran a and started circling cities. The epic road also requiring a budget well beyond the crowdfunding campaign and sought out trip they had been discussing since they means of two college freshmen. Unde- sponsors. Finally ready, they arrived in met on a ramp outside their dorm be- terred, they scaled their vision and route San Francisco in July to start their adven- fore their freshman year started to take down, settling on a still-ambitious 19 ture, only to find the van they had rented shape before their eyes. Initially, Kunho, states and 20 cities in 50 days. Even then, had no hand controls. That was the first a wheelchair user whose major is unde- they knew they would need more hands unexpected speed bump, but certainly cided, and Brad, a writing major, planned on deck to gather the data they wanted not the last on a journey that would cover to hit all 50 states, stopping in major cit- for the book, so they enlisted two more thousands of miles, more than a handful ies along the way to catalog accessible friends — Cynthia Cheung, a UK-native of access dilemmas and a number of hair highlights and lowlights for a travel guide with a passion for traveling, and You- styles, not to mention a once in a lifetime they would later publish. Myeong Kim, a fellow freshman from view of all the beauty America has to offer.

JULY 2015 21 cident that left him a paraplegic. DISCOVERING THE NEED Kunho spent the next three years in As a child growing up in South Korea Vietnam and South Korea, developing and Vietnam, whenever Kunho Kim an appreciation for accessibility. “Many thought about America, his mind filled of the buildings did not have ramps or with images of empty roads. America was a vast unknown, a place to explore — elevators,” he says. “When I spent a year a place Kunho, an avid traveler, yearned in my home country, South Korea, it to discover. He finally got that chance was a little bit better than Vietnam, but when he spent a year in Montana as an it was significantly challenging to move exchange student during high school. around. Many times, I could not find a But his perspective and his opportunity bathroom that was accessible.” Kunho boards the accessible Transformers attraction at Universal Studios. to explore were upended by a skiing ac- From his time in America prior to his accident, Kunho remembered seeing more people in wheelchairs out and about and more accessible amenities like ramps Do you Believe in Magic? and curb cuts. The prospect of going to college in a more wheelchair-friendly environment excited him. But upon arriv- Bowel & Bladder Basics are our Business! ing at Harvard, he was disappointed with how difficult it was to find up-to-date, re- Urological Supplements Suppositories liable information about accessibility. He decided to channel his disappoint- Cran Magic + ™ The Magic Bullet™ ment into a travel guide that would have bladder, kidney & urinary health. safe & sure! Faster acting, the information about restaurants, hotels water soluble suppositories. and destinations he had sought unsuc- cessfully. In Brad, Kunho discovered annose agic™ M M the perfect trip mate and friend. Brad is maintain a healthy urinary tract- flush Bowel Supplements an enthusiastic photographer who is on away E.coli. agic leanse™ M C the board of the Harvard College Writ- promotes fuller movements ers Workshop. More importantly the two with greater ease (and less time). shared a dream. “I told him that I want to do a road trip before I graduate and Brad said that was also his dream, too. That Enzyme Magic™ was how the snowball started rolling on better digestion= better elimi- and on,” says Kunho. nation. Over a number of long nights in the library, Kunho and Brad divided the trip into four sections and assigned each one to a member of their group. For that part of the trip, the chosen individual would be the “Supreme Master,” responsible for choosing what to see and do. They figured the trip would cost around $15,000. They launched a crowdfunding campaign with Mention This a compelling stop-motion video of Kunho * Ad and Receive sitting in front of the Harvard Square T stop while hundreds of people passed by 5% OFF him. That propelled their crowdfunding campaign to raise over $6,000. Coupled with a grant from the Christopher Reeve www.conceptsinconfidence.com Foundation, that was enough to cover the rest of the bill. They also worked the 2500 Quantum Lakes Dr. #214 phones and email to find sponsors, using Boynton Beach, FL 33426 an elaborate database to track who they (800) 822-4050 called, who they had heard back from *one time discount per customer and what else needed to be done. All they could do was wait for July.

22 NEW MOBILITY be remembered as the site of the first gan cutting across America’s heartland, ON THE ROAD evolution of Kunho’s hair. “I had always stopping in Kansas City and St. Louis First stop, San Francisco. Kunho and wanted to try different colors and I was before heading north to Chicago and Cynthia arrived first on July 7 and Brad curious about what would happen if I Detroit. After dealing with multiple ho- and You-Myeong three days later. Once bleached my hair,” he says. “It was a trip tel rooms with disappointing accessibil- assembled, the group spent two days that I would have once in my lifetime, so ity problems, everyone was glad to spend soaking up the sun and testing its plan to I just wanted to do every single thing that two relaxing days in Brad’s hometown of divide and conquer accessible attractions. I wanted to do.” St. Louis. The Arch wasn’t accessible, but Fresh with enthusiasm and energy, the “We bought some bleach in Vegas that a delicious float at Fitz’s and some down- team pushed through and over San Fran- was supposed to turn his hair white, but time playing video games helped reener- cisco’s notorious hills to check out Chi- when you put it in, it just turned red,” says gize everyone. natown, Golden Gate Bridge and Twin Brad. Another bleaching later on gave Trying all the regional cuisines proved Peaks. Kunho had his first experience Kunho a dirty orange look. Before he to be one of the highlights of the trip. Chi- getting stuck in sand at the beach, and ever got the white hair he’d been shoot- nese and Japanese food in San Francisco, the group overcame the trip’s first ob- ing for, he decided to shave his head. “I’d hot dogs in Chicago, BBQ in Kansas City stacle: a rental van with no hand controls. always wanted to try having a bald head, and “death sauce” wings in Buffalo were “It turned out to work in our favor,” says but my Buddhist parents never allowed but a few of the classics they found time for. Kunho, “as we got a better, bigger car.” me,” says Kunho. A quick check-in at Niagara Falls With one city down, Brad and You- Heading east, the team soaked up started a busy final two weeks wherein Myeong devised the group’s first “Tetris- some of the country’s natural beauty at the the team visited Pittsburgh, Washington, like” schematic to pack all of the gear into Grand Canyon and Canyonlands National D.C., Baltimore and Philadelphia before the van, and they hit the road. Los Ange- Park, and Rocky Mountain National Park. finally landing back home. By the time les loomed as the next “official” city, but “One of my favorite memories is when we they got to Pittsburgh, Kunho was feel- that didn’t stop the team from checking were trying to catch a sunset at the Grand ing the effects of the nonstop schedule. out the University of California’s Berke- Canyon,” says Brad. “We were driving as In addition to long days of sightseeing, ley campus and camping out under the fast as the speed limit would allow along Kunho and Cheung had been doing all stars in Yosemite. a two-lane highway as the light faded. We the driving because Brad and You-My- Fueled by fire-roasted chicken and finally arrived at the viewing post just after eong weren’t old enough. Still, Kunho re- s’mores, the team drove on to Los Ange- the sun had set, when there was still a faint bounded by the time they arrived in D.C. les for one of the most-event packed stops ribbon of light where the sun had passed of the trip. Even with visits to Hollywood, the horizon. The canyon was long and blue The Getty Museum, Universal Studios, the Getty Museum, and dark, and we sat and watched and Los Angeles the Griffith Observatory and the Santa thought and took photographs.” Monica Pier, the group found time to In Denver the group swapped out its discuss accessibility with Asians and Pa- Yukon XL for a Ford Expedition and be- cific Islanders with Disabilities of Cali- fornia and UCLA’s Office for Students with Disabilities. The jam-packed sched- TRIP HIGHLIGHTS ules and how much the group chronicled Kunho and Brad saw their share of would evolve over the course of the trip. museums, tourist attractions and restau- “We originally had this idea that that rants, and more than their share of good and bad examples of accessibility. Here are some of their favorites from the trip: we would include a lot more fancy restaurants and other things,” says Kunho. Best Museum: The Getty in Los Angeles “That proved a little beyond our reach, “They were really mindful of people in wheelchairs,” says Kunho. “All the tables and then we sort of reassessed what we were adjustable height and they told me they specifically thought about that and were capable of doing on the rest of the changed the structure of the tables.” trip and ended up saying ‘OK, you know “There’s a balcony and a wall overlooking the city and there’s this one place that what, we’re just going to limit ourselves to jutted out just a little bit from the wall with just a railing instead of a wall so that the sight-seeing attractions because that’s wheelchair users could also see the spectacular view,” adds Brad. really important, and that’s what we have the manpower to do.’” Best Food: Brad added that going to the same “I really liked the barbecue at Gates BBQ in Kansas City,” says Kunho. sorts of venues day after day had a way of “I would probably say the “death sauce” Buffalo wings we had at Duff’s Famous getting repetitive. “At some point, we had Wings in Buffalo,” says Brad. gone to like 20 different museums and for us, every painting and every sculpture in Best Destination: The Grand Canyon the museum looked the same.” “Some of the greatest places the country has to offer are its natural beauty, and our Las Vegas brought all the spectacle personal favorite locations were probably the national parks,” says Brad. and flash it is known for, but will likely

JULY 2015 23 and took part in the group’s last frantic ums and other public places as one of the scramble to see all the sights and check areas most lacking. out accessibility. As the group approaches the one-year Exhausted but excited, the group fi- anniversary of their adventure, they are nally wrapped up its adventure in Bos- hard at work on finishing up their sopho- ton on Aug. 24, 46 days after Kunho first more year and the travel guide. Besides arrived in San Francisco. Considering bringing all four travelers closer together, that Brad and Cynthia had never met, the trip also inspired Brad and Kunho to and Brad and You-Myeong had only met get more involved in access issues. “I’m once, it is somewhat remarkable that personally thinking about raising aware- they survived so well for so long in such ness of accessibility at Harvard because a small space. “I think we all came away apparently only two of the 12 houses with some really strong friendships, and Kunho loved Rocky Mountain National Park. that people live in are accessible,” says I thought that was really something spe- Kunho. “It’s an issue that needs to be and just go into a building and be like, cial,” says Brad. addressed. Brad and I are brainstorming let’s look for the elevator. It was very easy about talking to deans or people over here SEEING THE POSSIBILITIES and it was something that I hadn’t ever about trying to change the architecture of Over the course of the seven weeks, the really thought about it,” says Brad. the facility so that it’s more inclusive for group encountered its share of obstacles, After growing accustomed to Boston’s disabled people.” including a ruined bumper, an eight- cobblestone streets and colonial-era con- The trip did more than change Brad hour ordeal to find a lost set of keys and struction, Kunho found the West Coast and Kunho’s attitudes about access. “It a number of hotels that didn’t come and, pretty much everywhere other than really expanded my idea of what’s pos- through with the accessible rooms they Boston, to be far more accessible. “I was sible for me to do, what’s possible for had guaranteed. They always persevered surprised at the level of accessibility,” he people to do,” says Brad. “When we first and learned the best way to book rooms says, “but at the same time there was a lot had the idea of a cross country road trip, and handle other access problems. “I had of room for improvement.” In addition it was like a dream — but to see that be- never really had experience to look at a to the problems with hotel reservations, come real and to see that actually happen, building with an accessibility mindset Kunho pointed out clear signage at muse- it was really special.”

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References: 1Waller et al. Spinal Cord 1997;35:229-33 2Lopez Pereira et al. Acta Urol Esp 2001;25:725-30 © 2015 Wellspect HealthCare, a DENTSPLY International Company. All rights reserved. 76050-US-1503 International Company. HealthCare, a DENTSPLY © 2015 Wellspect HealthCare. LoFric® is the registered trademark of Wellspect “IF YOU WERE PART OF THIS MOVEMENT IN 1990, YOU CAN SAY EMPHATICALLY: TIMES HAVE CHANGED.”

CELEBRATING

PHOTOS BY TOM OLIN, MARY LOU MOBLEY, LAWRENCE ROFFEE, LOREN WORTHINGTON AND RACHEL BRIDGES 26 NEW MOBILITY PROGRESS “IF YOU WERE PART OF THIS MOVEMENT IN 1990, YOU CAN SAY EMPHATICALLY:

TIMES HAVE CHANGED.” — JOSIE BYZEK

1. THE ROAD TO FREEDOM, BY RACHEL BRIDGES/ MUSEUM OF disABILITY HISTORY/PEOPLE INC. 2. REDIRECT 25 PERCENT OF MEDICAID DOLLARS FROM NURSING HOMES TO COMMUNITY-BASED SERVICES, BY TOM OLIN. 3. INTEGRATED DANCE, BY MARY LOU MOBLEY 4. WE SHALL OVERCOME, BY TOM OLIN 5. CAPITOL ELEVATOR, BY MARY LOU MOBLEY 6. CAPITOL PROTEST, BY TOM OLIN 7. CAPITOL REHAB, BY MARY LOU MOBLEY 8. NURSING HOMES KILL, BY TOM OLIN 9. COMMUNITY GARDENING, BY MARY LOU MOBLEY 10. COMMUNITY MUSIC, BY MARY LOU MOBLEY

IS THE WORLD PERFECT NOW? OF COURSE NOT. BUT WE ASKED FOR ACCESS AND PRO- TECTION FROM DISCRIMINATION AND THE RIGHT TO LIVE IN OUR COMMUNITIES IN- STEAD OF IN NURSING HOMES — AND WE’VE GAINED A LOT OF GROUND.

JULY 2015 27

CELEBRATING PROGRESS

1. PARENTING, BY LOREN WORTHINGTON 2. THE LINCOLN MEMORIAL, BY MARY LOU MOBLEY 3. FARMER’S MARKET, BY LOREN WORTHINGTON 4. POOL LIFT, BY LAWRENCE ROFFEE 5. SHOPPING, BY MARY LOU MOBLEY 6. THE SIGNING OF THE ADA, BY TOM OLIN 7. CHAINED TO REVOLVING DOOR, BY TOM OLIN 8. ACCESSIBLE DOOR, BY LAWRENCE ROFFEE 9. BUSES ARE FOR EVERYONE, BY TOM OLIN 10. THE ADA TOUR BUS, BY RACHEL BRIDGES

28 NEW MOBILITY

“ImagesRELATED of Disability EXHIBIT Pride,” by photographers with disabilities (Lawrence Roffee, Christopher Voelker, Mary Lou Mobley and Loren Worthing- ton), will run as part of "25/40” — a celebration of the 25th anniversary of the ADA and the 40th anniversary of Very Special Arts. It takes place at the Kennedy Center, in collaboration with the Smithsonian, from July 16 to July 26. Other events include free performances, lectures, dance parties, film festivals and more. www.2540celebration.com.

“THEY SAY THE DEVIL IS IN THE DETAILS. WELL, SO IS REDEMPTION.” — TIM GILMER

THE SIGNING OF THE ADA 25 YEARS AGO PROMPTED PROFOUND CHANGES TO THE BUILT ENVIRONMENT. IMPROVEMENT IN ACCESS HAS OPENED UP MUCH OF LIFE, ALLOWING US TO PARTICIPATE IN OUR COMMUNITIES AND BE ACCEPTED AS PARENTS, AS CONSUMERS, AS PEOPLE.

JULY 2015 29 J U S T B E Rachel by Bridges/disABILITYPhoto History Museum ANDY O YOU’RE U R ONE S E OF L US. F

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30 NEW MOBILITY Photo by Rachel by Bridges/disABILITYPhoto History Museum A PEOPLE’S HISTORY BY JOSIE BYZEK n July 26, 1990, as he signed the sweeping civil has an anxiety disorder, one has a visual impairment and one rights legislation, the Americans with Disabili- has quadriplegia. These disabilities may seem dissimilar, but the ties Act, into law, President George H. W. Bush discrimination faced as a result of each was effectively the same. declared, “Let the shameful wall of exclusion fi- But when telling the tale of the ADA, most agree that the nally come tumbling down.” ADAtwo men who flanked President Bush while he signed the law He said a lot more than that, of course. He thanked Evan deserve special recognition. On his right sat Evan Kemp, who OKemp and Justin Dart, who flanked him during the signing, had muscular dystrophy, and on his left sat Justin Dart, who and he cited the mighty coalition that succeeded in getting the had polio. ADA before him to sign. He noted there were too many instru- mental people to name, a salute to how robust the movement to E VAN KEMP, THE INSIDE MAN pass the civil rights law was. Kemp was the disability movement’s “inside man” in many ways. In It was the most powerful coalition of people with disabilities the 1970s, Kemp worked as an attorney in Washington, D.C., and and their allies ever assembled. They all had a stake in getting struck up a friendship with C. Boyden Gray, who years later would this law signed, from the mother who testified to Congress that become Bush’s chief counsel. Through Gray, Kemp also became she could not find an undertaker to bury her child who died of friends with Bush, for whom Kemp wrote speeches for disability- AIDS, to the Vietnam War vet who could not freely leave his related events. Kemp, a wheelchair user, was a tremendous advocate housing project because the sidewalks were not accessible for for disability issues. He pushed back against the Reagan adminis- his wheelchair. tration when it tried to weaken disability-related regulations in the There would be no ADA early 1980s and also served without thinkers like law as the chair of the Equal Em- professor Chai Feldblum, ployment Opportunity Com- currently serving a second mission. term as a commissioner Like many with disabili- with the Equal Employ- ties, Kemp, a lawyer, was no ment Opportunity Com- stranger to the indignities of mission, who was the lead discrimination. Diagnosed attorney on the team that with a form of muscular drafted the ADA, or Patricia dystrophy when he was Wright, nick-named “the 12, he walked with a pro- General,” for how well she nounced gait at a time when kept the lobbying heat on in private law firms wouldn’t Congress. Or without lead- hire a man with a disability. ers like Lex Frieden, execu- So he worked for the federal tive director of the National government. At first he held Council on Disability at the a position with the Internal time, who oversaw early Revenue Service, and then drafts of the law. moved up to the Securities In fact, Feldblum, Wright and Exchange Commission. and Frieden’s experience He became a wheelchair speak to how sweeping the user in 1971 when a garage ADA is, as their rights as door slammed on his leg, people with disabilities are fracturing it so badly that all covered, even though one even after it healed he could

Photo by Tom Olin JULY 2015 31 no longer walk. “When I was walking I had the same disability,” he once said. “But when I was in a wheelchair it was more visible.” Formerly in line for a pro- motion, he was told a wheelchair user could not hold a supervisory position. In 1977 Kemp was able to successfully sue for job discrimination — and win. But he had had enough of being denied positions for which he was more than qualified. So he left the government in 1980, took over as director of the Disabil- ity Rights Center, and became the most prominent disability rights advocate in Washington, D.C. From his friendship with Gray and Olin Tom by Photo Bush to his experience working within Advocates, including Justin Dart (right), marched to spur passage of the ADA. government to his intimate knowledge Dart, a wealthy man from a wealthy family, of Houston. He earned degrees in his- of being excluded because of a disability, used his fortune to fire up the grassroots. tory and education, but the university Kemp, a Republican, was in exactly the Dart’s father, Justin Whitlock Dart, Sr., was wouldn’t give him a teaching certificate right place at the right time to help shep- president of Dart Industries — the com- because he was disabled. Today the uni- herd the ADA toward passage. pany’s most famous product is probably versity is home to the Justin Dart, Jr. Cen- JUSTIN DART, Tupperware — and his mother, Ruth Wal- ter for Students with Disabilities, which THE ‘FATHER OF THE ADA’ green Dart, was the daughter of Charles R. assists all students with disabilities to achieve their academic goals. While Evan Kemp and other advocates in Walgreen, of Walgreen Pharmacies. After graduating, Dart’s father sent Washington, D.C., kept the heat on Gray Dart contracted polio in 1948 as he Quickie_ADAIssue_NewMobility_Ad2_Layout 1 5/28/15 1:13 PM Page 3 him overseas to launch Tupperware Ja- and Bush from inside the beltway, Justin was preparing to enter the University pan, a company that he grew from four employees to 25,000. He embraced the MATT “corporate playboy” lifestyle — chasing Changing perceptions booze, women and money. He founded as Co-Founder of Adaptive Adventures, a greeting card company staffed by em- adaptive sports instructor, ployees with disabilities during this time and mentor period, but said he felt like a fraud, as if he’d fallen off the “Gandhi track” to race along the “Donald Trump” track. QUICKIE celebrates This all changed dramatically when he came face-to-face with the evils of 25 years of the ADA! institutionalization. In 1966, he toured a facility for children with polio in Saigon, Vietnam. “The floor of the whole place Thank you to all was covered with children ages 4 to 10, who work so hard with bloated stomachs and matchstick limbs,” he told New Mobility. “They to provide access, were starving to death and lying in their secure rights, and own urine and feces, covered with flies. A little girl reached up to me and looked improve lives! into my eyes. I automatically took her hand and my photographer took pictures. She had the most serene look I have ever seen — and it penetrated to the deepest part of my consciousness. I thought, here is a person almost dead, and she knows it. She’s reaching out for God and has found www.SunriseMedical.com a counterfeit saint doing a photo op. I was engulfed by the devastating perception that I have met real evil, and I am

32 NEW MOBILITY part of it. The way I’m living and dealing tion. When Dart returned to Washing- with Dart’s basic steel-framed manual with disability is killing this little girl. ton, D.C., he shared these conversations wheelchair. Although he could afford the I’m going to go to my hotel, drink John- with his fellow councilmembers, and finest equipment, Dart insisted on using nie Walker, eat a steak, and this picture is NCD drafted a report, “Toward Inde- a type of wheelchair afforded by impov- going to be in some magazine. I told [my pendence,” calling for a law that would erished Americans with disabilities. fiancée] Yoshiko, ‘We cannot go on as we protect the civil rights of people with dis- have been. Our lives have got to mean abilities. This would eventually become SECTION 504 – something. We have got to get into this the Americans with Disabilities Act. THE ACCIDENTAL fight and stop this evil.’” After the ADA was introduced as a CIVIL RIGHTS LAW When Dart and Yoshiko moved back to bill, Dart and Yoshiko repeated their These early origin stories of the ADA are the United States, Dart began serving the national tour, once more visiting every stirring and dramatic — all the more be- public in high-level roles, including being state and territory, to hold public forums cause they’re true. But they can give the appointed by President Ronald Reagan to about the ADA and to keep the grass- mistaken impression that America was a be vice chair of the National Council on roots engaged. It is estimated that over disability rights wasteland, and then along Disability, in 1981. Dart, like Kemp, was a 30,000 people attended these forums, came the ADA. Certainly the nation was high-profile Republican with a visible dis- and many of them advocated for the civil much less accessible, yet the ADA was built ability — and it didn’t hurt that Reagan rights legislation in one way or another. upon the solid work of earlier pieces of leg- was a close friend of the Dart family. These tours of the nation and subse- islation. Part of its brilliance is how it took While vice chair of NCD, Dart used quent personal connection to the grass- those earlier laws and wove them together his own money to tour every state and roots of the still-young disability rights into one comprehensive act. territory to meet with all who were in- movement led to Dart becoming known Probably the most important precur- terested in disability policy. The tour as the “Father of the ADA.” sor to the ADA was Section 504 of the allowed Dart to meet face-to-face with Those in power, too, connected Dart Rehabilitation Act of 1973. It’s very short, people who have every type of disabil- with the ADA. Once, when he saw Dart a tiny part of the overall law: “No other- ity and hear their concerns. This trip wearing his iconic cowboy hat at a White wise qualified handicapped individual in took place in pre-ADA America, a time House reception, President Bush intro- the United States, shall, solely by reason of period where there were no guarantees duced him as “the ADA man.” That hat his handicap, be excluded from the par- of accessible hotel rooms or transporta- is now lodged in the Smithsonian, along ticipation in, be denied the benefits of, or

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JULY 2015 33 be subjected to discrimination under any bered, anyway, as President Jimmy Cart- program or activity receiving federal fi- er was just taking office and had already nancial assistance.” appointed Joseph Califano as secretary of Nixon refused to sign the Rehab Act HEW. But Califano also did not want to into law, as it called for new funding for sign off on them. Independent Living programs, a new idea By this time, there was a groundswell back then. The law came before him twice, movement among people with disabilities and twice he would not sign it. The third demanding those regulations be signed. time it hit his desk, it was watered down Tusler Anthony by Photo “If the regulations were not signed by and most of the funding for Independent In 1977, disability rights activists in San Francisco April 4 in the form they were in when held a rally in support of Section 504, and then Living was removed. So he signed it, with- streamed into the Health, Education and Welfare Califano took office, there would be non- out understanding that the language in building, where they stayed for 25 days. violent demonstrations in HEW offices the law’s Section 504 would usher in civil nationwide,” wrote David Pfeiffer in Dis- rights for people with disabilities. groups to push for regulations to be writ- ability Studies Quarterly, which he edited. And this is where it gets interesting. ten, but didn’t have much luck. Finally he Pfeiffer was organizing demonstrations Dr. James L. Cherry, a veteran with convinced attorneys from the George- for the regulations in Boston and warned quadriplegia who was a research pa- town University Law Center to help him that demonstrations in San Francisco and tient at the National Institute of Health file a federal lawsuit, Cherry vs. Mathews, Washington, D.C., would be large. in Bethesda, Md., read Section 504 and on Feb. 13, 1976. He won his case and And thus the stage was set for the lon- asked the Department of Health, Educa- HEW was ordered to develop regula- gest sit-in in U.S. history at that time. In tion and Welfare when the regulations tions. At the same time, and unknown San Francisco beginning on April 5, activ- would be promulgated. HEW told him to Cherry, the new American Coalition ists of different ages, races and socio-eco- never, since it was just a policy statement. of Citizens with Disabilities was also lob- nomic groups, with disabilities of all kinds, “I aggressively disagreed,” wrote bying HEW for Section 504 regulations. held a rally, then filed into the city’s HEW Cherry in the Ragged Edge. “I didn’t see In 1977, the regulations were written, building and refused to leave until the mere ‘policy’ — I saw legal rights and but HEW Secretary David Mathews re- regulations were signed. Up to 200 people power; and I wanted both.” fused to sign them, even though he was participated. With the help of the Black Cherry sought support from disability held in contempt. His days were num- Panthers, local church groups and even The Para Ladder ® A Stairway to Independence The Para Ladder provides safe floor transfers for wheelchair users. Able-bodied users can go from the floor to standing postition.

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34 NEW MOBILITY local politicians who donated mattresses, History of the 504 Sit-in,” which can be its existence to historian Hugh Gallagh- they stayed 28 days. Finally, Washington, found at www.dredf.org/504site/histo- er, who at the time worked as a legislative D.C, invited a contingent of the activists to ver.html. “Disability had been defined aide for Sen. Bob Bartlett. Gallagher, a the capitol for negotiations, and the regula- by the medical model of rehabilitation, wheelchair user since age 19 due to polio, tions were signed soon after. charity and paternalism. If I thought shared his frustrations of trying to sim- “We, who are considered the weakest, about why I couldn’t attend a university ply do his job, but being unable to access the most helpless people in our society, that was inaccessible, I would have said many federal buildings. In response, he are the strongest and will not tolerate seg- it was because I couldn’t walk, my own and Bartlett wrote the Architectural Bar- regation, will not tolerate a society which personal problem. Before Section 504, re- riers Act. “I wanted it to be simple,” said sees us as less than whole people,” said Ed sponsibility for the consequences of dis- Gallagher. “I wanted accessibility to be Roberts, who, along with Judy Heumann, ability rested only on the shoulders of the one of the items on the checklist of de- is credited with helping to organize San person with a disability rather than being signers and builders.” Francisco’s sit-in. Roberts and Heumann understood as a societal responsibility. Referring to that earlier law, Sen. Bob are both well-known figures in the disabil- Section 504 dramatically changed that Dole, a supporter of the ADA, wrote, ity movement for founding and nurturing societal and legal perception.” “Hugh’s most outstanding contribution to the Independent Living movement. Yet, like the ADA, Section 504 did not the quality of life of people with disabilities just spring into being from nothing. It was to successfully place disability on the WHY THE RESISTANCE? was preceded, in 1968, by the Architec- agenda of the Congress for the first time.” Why were these regulations so resisted? tural Barriers Act, which required federal Discrimination against people with dis- buildings and federally-funded buildings THE RIGHT PLACE abilities at the time was so common and to be accessible to the public. This meant AT THE RIGHT TIME so insidious that even many people with a way in, a way out, and — very impor- Many other disability-related civil rights disabilities didn’t understand it for what tant — accessible restrooms. Because of laws were passed in the years leading up it was. “People with disabilities ourselves this law, Uniform Federal Accessibility to the ADA. The Education for All Handi- didn’t think the issues we faced in our Standards were developed by the Access capped Children Act, now known as the daily lives were the product of prejudice Board, which still revises both UFAS and Individuals with Disabilities Education and discrimination,” wrote sit-in orga- the ADA Accessibility Guidelines as well. Act, was passed in 1975 with the intent of nizer Kitty Cone in her article, “Short The Architectural Barriers Act owes ensuring students with disabilities equal Make Visitability Your Priority

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JULY 2015 35 access to education. The Air Carrier Ac- men, but those two were flanked by thou- cess Act of 1986 and the Fair Housing Act sands more. The ADA was most certainly Amendments of 1988 made it easier to one-of-a-kind legislation, comprehensive- travel and to have a home. And the rights of ly granting broad civil rights to citizens people with disabilities to live in the com- with disabilities, but it came about because munity also had begun to be recognized. of a long history of legislative action.

All of these laws, and many more not When Bush proclaimed that the Olin Tom by Photo listed, had their own groups of support- shameful walls of exclusion finally were ers. The ADA could not have been passed falling down, thousands of activists na- in as strong a form as it did without all of tionwide felt a strong sense of accom- these efforts. plishment. But the ADA itself was nei- Whose idea was the ADA? In a sense, ther a beginning nor an ending. It was a it was everyone’s who was active in dis- bold expansion of, and a future catalyst ability rights at the time. It was born in the for, disability rights laws passed prior to Washington, D.C., beltway in discussions and following its passage. between Evan Kemp and Phil Calkins who The movement for full recognition of dreamed about such a thing while serving the civil rights of people with disabili- together with the Equal Employment Op- ties has come a long, long way, and the portunities Commission. It was born on 25th anniversary of the ADA deserves to the interstate highways connecting the be celebrated, as do those who helped to public forums held by Justin and Yoshiko make it possible. But like those activists Dart. It was fought for in the HEW build- who have come before us, we must con- ing of San Francisco and yearned for by Corporation Transit Boardley/Delaware Lerrissa by Photo tinually look to what can come next. And young Judy Heumann who demanded the The Delaware Department of Transportation, once we achieve that, we must reach for right to teach school in New York City — in conjunction with the Delaware ADA25 com- more, until every person with a disability mittee, is celebrating the ADA with ads on the first wheelchair user to do so. bus shelters. Similar partnerships between has full and equal access to all our great When the ADA was signed on July 26, advocates and government officials are taking society has to offer, and full inclusion is 1990, the president was flanked by two place throughout the United States. no longer a dream but a reality.

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36 NEW MOBILITY Photo by Tom Olin Tom by Photo

HOW THE LAW HAS EVOLVED SINCE 1990 BY JAMES WEISMAN

ven before its passage, the Amer- er, since the disabled plaintiff prevailed, it icans with Disabilities Act raised wasn’t immediately alarming. In the 1998 the expectations of people with case, Abbott v. Bragdon, an HIV-positive disabilities. The prospect of woman in Maine sought dental treat- Eequal opportunity, access, and a legal as ADA ment. When the dentist learned of her well as moral responsibility for employ- condition, fearing for his and his staff’s ers, government and proprietors of places safety, he sent her away. The evidence in of public accommodation to make rea- the case indicated that danger was not sonable accommodations lifted spirits in probable if standard precautionary mea- anticipation of the America that would sures (eye shield, gloves and mask) were be. Perhaps the ADA’s biggest contribu- used. If she posed a danger to herself or tion to enhancing the lifestyles of people others — that is, if danger were probable with disabilities was the creation of a col- not merely possible — the dentist would lective consciousness among people with have prevailed. In Abbott the Court con- disabilities about their rights. A second- sidered whether the plaintiff was dis- ary benefit that was somewhat slower in abled as defined by the ADA, because if coming (and some complain it has not yet she wasn’t, she couldn’t sue the dentist. arrived) is the collective consciousness The ADA defined a covered disability among people without disabilities of the as a physical or mental impairment that needs and rights of those with disabilities. substantially limits one or more major Litigation victories are numerous, as Today, wheelchair users like Corbin Beu and life activities, a history of having such an are significant defeats, but the law instantly Renee Tyree (above right) expect reasonable impairment, or being regarded as having became, and still is, a guide for how right- accommodation in the workplace. Photos by such an impairment. Loren Worthington. thinking people should consider disability The Court ignored the “regarded as” issues and treat people with disabilities. sible (they were); and should people with part of the definition and decided to The most controversial portions of the mental disabilities, both intellectual and wedge the plaintiff into the functional ADA — when it was being considered psychological, be protected (they were). limitation portion of the definition. They by Congress — did not become the most These subjects and several others, equally found her disability to be the inability controversial part of the law after enact- not controversial in retrospect, did not to procreate, ignoring both the reality ment. Looking backwards 25 years after generate much litigation after enactment. that those with HIV can have children the ADA’s passage, the most controver- The definition of disability, however, and that the dentist clearly regarded sial section of the act turned out to be the which was borrowed from the Rehabili- the plaintiff as having a disability and definition of “disability,” something the tation Act of 1973, was misinterpreted treated her accordingly, whether or not Congress hardly discussed. by the U.S. Supreme Court and used to she was substantially limited from life Early congressional consideration in- unfairly deny a judicial remedy to people activities at all. cluded such mind-boggling discussions with disabilities discriminated against as should homosexuals and people with CATCH 22: DISABILITY NONEXISTENT because of their disabilities. sexual identity disorders be protected by WHEN TEMPORARILY CORRECTED the Act (they were specifically excluded); Misunderstanding the three prongs of should food handlers who were HIV-pos- THE FIRST LEGAL DISASTER the “who is covered by the act” provisions itive be excluded from coverage (they were The Supreme Court’s first attempt to deal of ADA began with Abbott but was per- not); should buses be required to be acces- with the definition was a disaster. Howev- sonified in the Sutton trilogy of cases de-

JULY 2015 37 NM READERS: ADA VICTORY STORIES We asked our readers to send us their personal ASKING FOR CHANGES “victories” that came about as a result of the I have been a wheelchair user for 15 years now. ADA being implemented and lifestyle choices I’ve had some success in helping my neighbor- enhanced. Here is a sampling of the kinds of sto- hood become more accessible by getting the ries that symbolize 25 years of progress. Maryland MTA to make the Linthicum light rail station accessible to all of its citizens by having CONVENIENT CONCERTS a ramp installed on the west side of the station As a longtime concert goer, one of the ways so it can be safely accessible to wheelchair us- that the Americans With Disabilities Act has ers and others, like people who push strollers had a positive impact on my life is it is now and walkers. Also, I was able to get our county convenient to purchase concert tickets and government to increase fines for violating the accessible seating, not only for myself, but use of accessible parking spaces from $100 also for as many companions as I wish. Ad- to $500. I have been speaking up for others ditionally, the security staffs at the majority Cathy Riechers and her boyfriend, Mike Offen. who do not report ADA violations whenever of the concert venues I attend are very good WHEN THE ADA WORKS I come across them. about providing accessible parking and ac- Ronald Howard I recently purchased tickets for the Weidner cessible bathroom facilities. Linthicum Heights, Maryland My friends and I saw Eric Church last year, Center for the Performing Arts at the Uni- and the people at The Marvin Sands Perform- versity of Wisconsin Green Bay. This theatre WHEELCHAIR SEATING ing Arts Center in Canandaigua, N.Y., went out hosts off-Broadway plays, music concerts, AT FENWAY PARK and a variety of cultural venues. I’ve been of their way to make sure my experience was Baseball at Fenway Park was one of life’s joys a pleasurable one. hesitant about attending anything there that I thought was gone forever as I lay on the Tom Turner for fear it would not be accessible, but I was gurney trying to wiggle my toes after unsuc- Victor, New York pleasantly surprised to see the access I had. I cessful surgery on my T11 tumor. Much as purchased balcony seats (the view was great!) I loved the old stadium, I could not imagine ACCESSIBLE PUBLIC BUILDINGS even though I was afraid I’d be stuck behind navigating the historic ballpark if I could no I am a 54-year old T3 paraplegic from a car a pole. Not only were the seats great, but longer walk. accident in 1984 at age 22. I think the best there was an usher there to open the doors. After 32 very dark nights in Cedars Sinai Hos- thing about the ADA at first was the fact that The bathrooms were large and easy to use. pital in Los Angeles, regaining my life began in all government buildings had to have access Handicap parking was filled, but they found earnest. My incomplete paraplegia responded [even though the 1973 Rehabilitation Act re- us a place to park. We saw the UW Marching better than predicted to physical therapy, fam- quired this, many buildings remained non- Band and it was a great day. This experience ily support and personal stubbornness. Within compliant until the ADA passed]. I remember has made me comfortable going to different a year of the crippling surgery, I had learned to before passage of the ADA routinely having types of places again. I can’t wait to see the manage airports and flying, disassembly and to ask someone to get my mail out of my P.O. new lineup of events. reassembly of my mobility scooter, and hand- box at the post office because there was no Thank you to the University of Wisconsin controlled rental cars. Grandchildren in Massa- wheelchair access. In 31 years as a wheelchair Green Bay Weidner Center for doing what so chusetts, whale watching in Cape Cod Bay, and user, I have seen a lot of changes for the bet- many businesses don’t. It’s wonderful when Fenway Park awaited. ter, but we still have a long way to go. the ADA is applied, because it works. The Red Sox were in the middle of mul- Alan Duboyce Cathy Riechers tiple seasons where every home game was Bridgewater, New Hampshire Fon du Lac, Wisconsin sold out. I called to ask about accessible cided by the Supreme Court together. In the airline’s. The women were denied On the same day in Murphy v. United the 1999 case, Sutton v. United Airlines, employment by United Airlines, and the Parcel Service, and Albertsons v. Kirking- twin sisters who were commercial pilots Court held that disability must be con- burg, the Court denied relief to an indi- but wore eyeglasses applied for jobs with sidered in its mitigated state. The women vidual whose high blood pressure was United Airlines. The airline had an em- were not disabled within the meaning normal because he took medication for ployment policy that required their pilots of the ADA, according to the Court, be- it — even though he was denied employ- to have better than 20/200 vision when cause when mitigated, their low vision ment because of his high blood pressure; not wearing glasses. Both pilots wore was eliminated — with glasses they saw and the Court also denied relief to an in- glasses and, when corrected, had normal normally. Therefore, the Court held that dividual denied employment as a truck vision. But no law or regulation required they were not disabled and could not sue driver because he only had vision in one pilots to see better than 20/200 without the airline even though they were denied eye. The Court found that his monocular their glasses — the policy was strictly employment because of their low vision. vision was not a disability since it didn’t

38 NEW MOBILITY seats, expecting to discover that I was many As the game progressed, I ventured on months too late. The box office representa- my own to the men’s room and concessions. tive said the team often has seats available for Without family members to run interference, handicapped fans even just a few days before I encountered the greatest accommodation a game. I managed to secure a wheelchair any wheelchair user can ask for in a public spot, a companion seat next to me for son place — fantastic people. Fenway ushers di- Graham and even a pair of seats nearby for rected me to the ramps and away from the our daughter Emily and her boyfriend Steve. steps. Rowdy, fun-loving guys hollered at With great good fortune we parked within their friends to get out of my way. I became a reasonable scooter ride to Fenway Park. My part of their fun. Goofing around with fellow Pride Mobility Go-Go Elite three-wheeler had fans at Fenway Park, it was like old times. never before encountered the cobblestones With a little boost from the ADA, the Red and inclines one must traverse to Fenway Sox organization did some ingenious engi- Park from Kenmore Square. The nerves in my neering and adopted the right attitude to DJ Stemmler helped get this ramp installed. “If body that still worked complained mightily make their very old ballpark one of the most ac- we can get three or four businesses a year, I’m cool with that.” about the jarring over the rough walkways. commodating places I have visited anywhere. I But we made it. We were ready to answer the cannot wait for my next game at Fenway Park. ciation, University of Pittsburgh and Carnegie ultimate question of the day: Is this over 100 Stacy Holmes Library of Pittsburgh. Oakland for All: Beyond years old ballpark really accessible? Mission Viejo, California Accessible Partners were sprinkled through- I was amazed. Fenway Park seemed utterly out each group along with volunteers, sup- unable to be adapted for disabled people as I NO NEED TO BE ADVERSARIAL porters and friends. had thought about it from my perspective of On May 5, Accessible Oakland did its first The crawl was split between accessible more than 40 years as a nondisabled Red Sox Ramp Crawl in Pittsburgh’s Oakland section. and inaccessible bars, since we didn’t want fan. But I was so wrong. I went up a little ramp We didn’t really crawl. We just went bar to just go to accessible ones. Also, this meant made of concrete that looked like part of the to bar, eating and drinking. The whole goal that during half of your crawl you had access original 1910 construction. A walkway be- was to have businesses see that there are to a bathroom. We ended up at the Garage tween the lower and upper grandstand seats people with disabilities interested in coming Door, a small neighborhood bar on Atwood had been widened. Perhaps they took out a into their establishments, spending money, Street. It has cheap beer, great cheap food, row of seats to gain the added space. Non- and having a good time. There were about 50 and 30 of us took over the back room. None disabled fans easily crisscrossed the walkway “crawlers.” We split up in small groups, every- of us thought there was an accessible bath- behind the wheelchair fans and their com- one went to a different bar to start out with, room, but the owner said, “Yeah, there is,” panions enjoying the game. Amazing. and then every 45 minutes or so we changed. opened up a door, and we said, “this is great!” So all night long businesses saw people with He just needs to let people know it’s there disabilities coming in groups with friends; with some signage. each group would leave and another would It’s 25 years after the ADA has passed and come. We created awareness, spent money Oakland remains mostly inaccessible. I’m not and tried to create a positive experience in- celebrating yet as much as I am continuing to stead of an adversarial one. plug away. I don’t think suing everybody in the The National Council on Disability was in world is the answer, but getting them to the Pittsburgh to hold its meeting, and some of table to talk about it might be. I am done being their members came and joined us. Some angry. I just want change. If we can get three or city employees also came, like our city’s ADA four businesses a year, I’m cool with that as long Stacy Holmes coordinator, and also representatives from as we keep moving in the right direction. Oakland Business Improvement District, Oak- DJ Stemmler land Transportation and Management Asso- Pittsburgh, Pennsylvania

substantially limit his ability to engage in sulin were denied remedies even though would have no functional impairment. a major life activity. they were discriminated against because This complete disregard of the “re- they were diabetic. In one case, a diabetic ADA AMENDMENTS ACT garded as” prong of the test for who is pharmacist who needed reasonable ac- protected by the ADA spawned dismiss- commodation — the ability to eat lunch OF 2008 AND OLMSTEAD als of hundreds of employment discrimi- at the same time every day to regulate his Consideration of disability in its mitigat- nation claims throughout the United blood sugar — was denied that accommo- ed state became a hurdle that defendants States. People with epilepsy whose sei- dation. The Court, incredibly, found that put between those they discriminated zures were controlled by medication but he was not disabled within the meaning against and the plaintiffs’ ability to seek who were discriminated against because of the ADA because if he ate at the same relief. Since this was clearly not Con- of the epilepsy had no remedy; diabetics time every day — that is, if his disability gress’s intent in enacting the law, organi- whose symptoms were controlled by in- was considered in its mitigated state — he zations of people with disabilities asked

JULY 2015 39 STAY STRONG, ADA! THERE’S MORE WORK TO DO

Americans with Disabilities Act, we thought you were going to fix 3. LET’S CO-OPT THE TRANSIT REVOLUTION. Ride- everything! But you didn’t, did you? What’s that, you say? It’s not sharing is brilliant. Smartphone apps that connect you with your fault — it’s people being their usual, pigheaded selves? It’s rides: brilliant. But now all that hard work we did to make government obduracy? Well, that’s fair. But stay strong, ADA! We’re old-school buses and trains and cabs accessible is at risk on a roll. Now, let’s take care of unfinished business. of obsolescence. We chained ourselves to Greyhounds, for chrissakes! We need to join today’s revolution. We can gain jobs as well as rides. Are we going to let these new transit 1. NORM WOULDN’T SUE CHEERS. There are only two ways to punks leave us in the dust? get the ADA enforced. Regular people with disabilities have to either file complaints with the DOJ or sue their local businesses. 4. ACCESSIBLE TRAVEL IS A “THING,” BUT ... there are still That’s like Norm suing Cheers! Especially if you live in a small glitches. Like, wheelchairs mangled by baggage handlers, town. Truly, everyone will know your name. On the other hand, shuttles with “broken” lifts and rental companies where you if you live in a big city, you can file so many lawsuits that a judge can’t even get a hand-controlled mini-van, and when you will step in and bar you from being able to use the only legal reach your destination you need a wing and a prayer to climb instrument permitted to you in the first place. Can we create up into your super-high hotel bed. Yet with all of these hassles, access and keep the peace at the same time? it’s worth it to have vacation pics to inflict upon our friends.

5. OLMSTEAD KIND OF WORKS. But that landmark ADA settlement doesn’t create a right to personal assistance, it leaves it up to states to create programs. We need a legal right to in-home care, just like the one that says we’re entitled to a nursing home bed. ADAPT’s latest fix is the Community Integration Act, which died in committee last congressional cycle. When will our representatives remember they represent us, too? When we make them.

6. SAY, DOESN’T THE ADA COVER DOCTOR’S OFFICES AND HOSPITALS? It’s absurd that the same people who think they know the most about disability ignore our most basic needs. Wheelchair- accessible exam tables and scales can be purchased, but still are not common features. And as for hospital rooms, you’d think they’d be the first to become accessible, but in fact they’re often the last. Why not ask your doctor why he thinks this is so?

7. SPEAKING OF HEALTH CARE … it’s great the Affordable Care Act has made pre-existing conditions a thing of the past — thanks, Obama. But we still can’t buy long-term care 2. WHERE ARE THE JOBS? Twenty-five years after disability insurance or even life insurance at affordable rates. Someone discrimination was outlawed, unemployment is actually worse, needs to tell the insurance companies we’re not dead yet. not better. And sometimes, even when you do get a job, you can’t keep it because of outlandish regulations — as in the 8. WHY SO MANY INACCESSIBLE HOUSES OF WORSHIP? case of Jenny Weast, who was so successful at teaching that True, they’re not covered by the ADA, but shouldn’t they do she earned “too much” and is told she has to choose between the right thing? There is something sadly ironic about a church her job and attendant care. We need some new thinking at the with a sign declaring all are welcome at the top of an ancient intersection of rights and regulations to keep active, motivated staircase. And yet, there’s still one thing we can count on: people with disabilities in the workforce. All we want is to pay Complete strangers accosting us in public to “pray the demon our fair share of taxes! of paralysis” away.

40 NEW MOBILITY PRIOR TO ADA NONDISCRIMINATION WAS PASSIVE. ADA MADE THE governments to ensure inclusion of peo- STAY STRONG, ADA! THERE’S MORE WORK TO DO FAILURE TO ACT — THAT IS, TO MAKE REASONABLE ACCOMMODATION — ple with disabilities in state-sponsored DISCRIMINATORY AND UNLAWFUL. programs and a litigation tool to be used against state governments when those Congress to amend the ADA in a manner tion with the Giuliani administration, with disabilities are segregated, excluded that would specifically nullify the Sutton Mayor Bloomberg settled the case. The from or isolated by state and local govern- trilogy. Despite the risk that Congress city has spent $243 million so far to ramp ment activity. might attempt to weaken the ADA once its 168,000 corners and all but 3 percent the Act was being reconsidered, the dis- are complete. United Spinal and other ability community pushed forward, and plaintiffs with disabilities persevered THE BIG PICTURE: ADA with the help of Republican Rep. Jim and finally forced Mayor Bloomberg to CHANGES BEHAVIOR Sensenbrenner of Wisconsin and Demo- settle ADA litigation to make taxis ac- From a jurisprudential point of view, the cratic Sen. Tom Harkin of Iowa, the ADA cessible. After 11 years of opposing acces- ADA changed the meaning ascribed tra- Amendments Act of 2008 passed. It in- sible taxis, prompted by ADA litigation, ditionally to “nondiscrimination.” Prior structed the courts to disregard Sutton Bloomberg agreed to have 50 percent of to ADA nondiscrimination was passive. and its mitigation language and restored the City’s yellow cabs accessible by 2020. Refraining from treating people differ- the “regarded as having a disability” basis The Supreme Court’s 1999 decision in for claiming discrimination. Olmstead v. L.C. will have lasting signifi- ently because of their race, gender, reli- Meanwhile, legislative and litigation cance. In Olmstead, the court required gion, etc., and treating everyone equally victories and advances fostered more liti- states to eliminate unnecessary segrega- was all that was necessary to guarantee gation as well as state legislation to pre- tion of persons with disabilities and to en- compliance and socially correct behavior. vent and redress discrimination. Many sure that persons with disabilities receive ADA made the failure to act — that is, to cases were brought and settled, not re- services in the most integrated setting ap- make reasonable accommodation — dis- sulting in judicial decisions that could be propriate to their needs. This decision is criminatory and unlawful. used by others as precedents, but clearly important, not just because it outlaws in- However, the ADA, while requiring ac- reflecting changing social mores. For ex- stitutionalizing most people with mental commodation, only does so to the extent ample, United Spinal Association sued disabilities and requires that they live and that such accommodation is reasonable. New York City for failure to install curb receive services in the community. Olm- The ADA merely requires reasonable be- ramps. Following seven years of litiga- stead has also become a guide for state havior — and that is its simple beauty.

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NewMobility.indd 1 5/5/15 11:27 AM SPOTLIGHT: NORTH CAROLINA BY DEBBIE JOHNSON

MY TAKE If the mountains are your preferred get- SKINNY ON THE STATE Stretching over 500 miles from east to west, North Carolina’s geography boasts away, visit Western North Carolina and something for everyone. After getting your fill of the outdoors, try exploring, eat- enjoy the Great Smokies, Blue Ridge ing and drinking to your heart’s content at the Biltmore Estate, Grove Park Inn or Mountains and all the eclectic unique- any of the amazing restaurants, breweries and attractions in downtown Asheville. ness of Asheville. Tour America’s largest home and experience life as a Vanderbilt at The Biltmore Estate. Enjoy a sunset while sipping wine at the Grove Park Inn. This mile- A fall drive on the Blue Ridge high swing- Parkway can’t be beat for leaf- ing bridge is wheelchair changing beauty and scenic accessible. vistas, all from the comfort of your vehicle. The Parkway’s Linn Cove Viaduct is an en- gineering marvel, and accessible peaks, including Mount Mitchell and Grandfather Mountain’s mile-high swinging bridge, give amazing 360-degree views. Bring your endurance Learn because level terrain is hard to come by! about the If beaches are more your style, North the attractions at the Outer Banks. The available to borrow free of North Caro- Carolina’s Outer Banks will not dis- Life Rolls On Foundation hosts yearly charge. These are provided on lina Chapter on next page appoint. Sun, sand, lighthouses, the adapted surfing events at Carolina Beach a first-come, first-served basis, Wright Brothers, the USS North Caro- in June and there are seven different lo- so plan ahead if you go during lina, and fresh seafood are just a few of cations that have beach wheelchairs peak season.

PLACES TO GO a unique opportunity to cover 180-240 HEALTH CARE Raleigh is consistently voted one of the miles of North Carolina terrain via hand- North Carolina’s major central cities best places to raise a family and a top cycle/bicycle in a safe and supported envi- host impressive rehab centers, premier city for careers and business in a mul- ronment. Of course, if you prefer to travel medical care, Research Triangle Park, titude of national surveys. As a Duke in a faster manner, Charlotte is also ready top colleges and universities and adap- grad, I’m partial to Durham and visiting to offer you wild rides at the U.S. National tive sports programs. Raleigh is also the the Duke Chapel, Sara P. Duke Gardens Whitewater Center, or faster yet, NAS- central location of the NCSCIA’s offices and if you’re a fan of NCAA basketball, CAR, at the Charlotte Motor Speedway! as well as North Carolina State’s Center Cameron Indoor Stadium. Alternatively, for Universal Design. North Carolina is you can venture down the road a bit to proud to have three CARF-accredited the oldest state university in the United MUST SEE, MUST DO spinal cord injury rehabilitation systems States, University of North Carolina, of care — WakeMed in Raleigh, Caroli- Chapel Hill, if you insist on cheering for Visit Raleigh next February for The nas Rehabilitation in Charlotte and Vi- the Tar Heels. Durham is listed on the Krispy Kreme Challenge — a “2,400 dant Rehabilitation Center in Greenville. Christopher and Dana Reeve Founda- calories, 12 donuts, 5 miles, 1 hour” The rehab facilities in Raleigh and Char- tion’s Top 20 Most Livable U.S. Cities for race that benefits the North Carolina wheelchair users. The American Tobac- Children’s Hospital. Participate to lotte offer highly advanced therapeutic co Trail, a paved greenway beginning in your stomach’s content or just watch equipment, including robotic walking Durham, provides over 22 miles of unin- the carnage! Afterwards, indulge programs, featuring the Ekso and Re- terrupted wheeling or walking. in some delicious North Carolina Walk systems, respectively. Additionally, For recreation, the Adaptive Sports and barbecue, and wash it all down with Carolinas Medical Center was recently Adventures Program of Carolinas Reha- North Carolina’s own cherry soda, chosen as a study site for the neuro- bilitation, in Charlotte, provides a huge ar- Cheerwine. In 2017, Cheerwine will spinal scaffold, an investigational device ray of adaptive team sports and activities be available in all 50 states, but why intended to improve recovery after a spi- for wide variety of disabilities. Their pri- wait till then? nal cord injury, by promoting structural mary fundraiser, Cycle to the Sea, provides support for spinal cord regeneration.

JULY 2015 43 Chapter Check-In

North Carolina Chapter: Coast-to-Mountain Activities When Debbie Myers fell while painting her home in Henderson, N.C., she couldn’t have anticipated what the next 12 years would bring or how many lives she would affect. While rehabbing from her T12 SCI, she inadvertently became the go-to person for SCI questions and resources. Myers was approached by the therapists and managers of WakeMed about starting a North Carolina chapter of the National Spinal Cord Injury Association (now United Spinal Associa- tion). Unable to resume her career at Sprint, helping start the NCSCIA was an opportunity to fulfill a need in North Carolina’s famed “Triangle” area and allow Myers to apply her professional skills and talent for the greater good. In the fall of 2003, WakeMed Health and Hospitals Rehabilitation Center provided the initial support, time and personnel to help get NCSCIA’s semi-annual handcycle clinics are popular with its members. the NCSCIA off the ground. The initial goals centered on four objectives: support, commu- to solicit accessibility input from Myers. The munity as well as three of the state’s rehabili- nication, information and advocacy. result is a wonderfully accessible host facil- tation hospitals. The chapter’s offerings have The chapter’s first fundraiser was a ity with bathrooms so large you could live mirrored the group’s geographic expansion. “Womanless Pageant” spaghetti dinner in them. “We have expanded the reach of our pro- fundraiser, featuring men dressed in hideous Following the release of the 2005 docu- pageant attire. Twelve years later, the chapter gramming to include educational programs mentary “Murderball,” NCSCIA capitalized is now known for its much fancier, and more at various rehab facilities and support groups. on local interest in quad rugby to host a formal, annual Wine Event at Angus Barn. We are currently producing a video series quad rugby clinic in Raleigh. Despite hav- Every year in October, Raleigh’s Angus Barn that includes stories of people living with ing only a beginner’s understanding of the restaurant plays host to a fabulous evening of SCI as well as stories about less-than-ideal game, the chapter begged for and borrowed wine, silent auctions, raffles and community. medical interactions,” says Myers. These rugby chairs and assembled a ragtag (but videos will be shown in rehab hospitals to inspired) group of players and volunteers educate newly-injured patients as well as who eventually formed the core of the used to educate primary care providers and Raleigh Sidewinders. This year, the chapter hospital staff who may not be familiar with will embark on the 10th year of the annual the specific needs of the SCI population. Raleigh Rumble Quad Rugby Tournament. In the last few years, the NCSCIA has Players have credited this team with helping taken on some exciting new projects. Pro- to pull them out of their “dark place” and one viding structured peer support and a peer- player’s father saying the team “saved his mentoring program has long been a goal of son’s life” post-injury. The chapter has continued to build its the chapter. With the assistance of Lindsey adaptive sports programs. Semi-annual hand Elliot of United Spinal, the NCSCIA has cycle clinics and adaptive fishing events hosted peer mentor training sessions in Raleigh and Charlotte, with more planned The money raised at this annual event helps have become popular, and in 2007, the to maintain the chapter’s current programs Triangle Thunder wheelchair basketball team in the future. Another exciting development and services, as well as aiding in the devel- came under the umbrella and sponsorship of this year has been the addition of a financial opment of new programs for the SCI com- NCSCIA. assistance program. Each quarter, the board munity in NC. From being largely Raleigh-centered reviews applications for financial assistance This event also promotes commu- initially, the NCSCIA now includes board for anything from ramp repairs, respite care, nity awareness and education about SCI in members from the coast in Wilmington to gym memberships, etc. The first recipient sometimes-unexpected ways. When it came the mountains in Asheville as well as the is putting his grant money to use to allow time to expand and renovate their restaurant core group from Raleigh. The chapter boasts him to participate in an independent fitness and facilities, the Angus Barn went so far as a diverse board with members of the com- program and utilize WakeMed’s FES bike.

44 NEW MOBILITY News

VetsFirst Finds New Leader and pivotal consumer group representatives collaborated in earnest to add to the event’s United Spinal Association recently announced dynamism. “Bill and I recognize the value of the appointment of Ross Meglathery as the working with the international SCI/D com- new director of VetsFirst, its program that munity. It was clearly evident that many of the helps thousands of vets reintegrate into their issues individuals are dealing with here in the communities. Prior to his appointment at United States are the exact same issues indi- VetsFirst, Meglathery spent over 15 years in Each red dot represents a zip code where viduals all over the world contend with,” says the military. Subsequently, he was selected members of United Spinal live. Elliott, United Spinal’s director of member as a Congressional Marine Fellow where initiatives. ”We hope to be able to attend next he worked on Defense, Homeland Security, United Rolls to International year’s conference and demonstrate expansion Veterans and Small Business issues. Meglath- Conference of United Spinal Association’s international ery is currently a Lieutenant Colonel in the presence and continue to strengthen our in- United Spinal Association’s Lindsey Elliott Marine Reserve. ternational network to be able to educate and and Bill Fertig were honored to be part of an As a civilian, Mr. Meglathery has worked empower all individuals living with SCI/D.” international team of presenters at the 2015 as a program analyst at the Office of Special The international community was able to International Spinal Cord Society and Ameri- Programs at the Department of Homeland see a map of the ever growing ‘Spinal Net- can Spinal Injury Association Joint Scientific Security for intelligence, surveillance and work’ of United Spinal individual members Meeting in Montreal, Canada, May 13-16. reconnaissance matters. “United Spinal is in the United States — each dot is a zip code Their presentation addressed “Engaging Spinal privileged to have such an honored veteran and where clusters of members live [see photo]. accomplished talent as Ross take leadership of Cord Injury Consumers Across the Research our VetsFirst program,” said Joe Gaskins, pres- and Clinical Care Spectrum.” The annual ident and CEO of United Spinal. “Ross brings event focused on the latest advancements and Scholarship Opportunity for an in-depth knowledge, appreciation and directions in research regarding SCI/D with Gait Training in Northern understanding of the challenges our veterans other key researchers from around the globe. California “The joint scientific meeting is a wonder- confront when returning home,” he added. Thanks to the Everyday Abilities Founda- ful opportunity for international collaboration For his military service, Meglathery was tion, the San Francisco Bay Area Chapter of with all different types of SCI professionals awarded the Navy and Marine Corps Com- the United Spinal Association, ten qualified from around the world. Lindsey and I renewed mendation Medal with Valor Device, the individuals living with spinal cord injuries or existing relationships with colleagues in the Purple Heart and the Combat Action Ribbon. disorders will receive two weekly sessions on SCI/D community and made numerous new Meglathery is a graduate of Harvard Uni- one or both gait training therapy machines at international connections,” says Fertig, the versity where he earned a master’s in public Pleasanton, Calif.-based SCI-FIT for one year. director of United Spinal’s Resource Center. administration. In addition, he holds a master Each session includes about 15 minutes of set- “It truly is a remarkable platform for folks of science in the management of information up and 45 minutes of therapy. to come together and share ideas to continue technology degree from the University of To be eligible for the Gait Training Schol- improving the quality of lives with individuals Virginia and a bachelor of arts in history from arship Treatment, you must be cleared by a living with SCI.” Trinity College, Hartford. physician to participate in an intense exercise Meglathery replaces Heather Ansley who Fertig and Elliott’s presentation highlight- therapy program that includes weight-bearing is currently associate general counsel for cor- ed United Spinal’s outreach efforts and out- activities through the upper and lower extrem- porate and government relations at Paralyzed lined United Spinal’s advocacy and legislative ities. You must also be able to stand assisted Veterans of America. efforts in the U.S. and connections throughout or be vertical for 20 minutes with no blood VetsFirst works to ensure veterans, their the international SCI/D community. Addition- pressure issues and have no open lesions or spouses, dependent family members and ally, Fertig and Elliott shared organizational pressure sores. survivors receive healthcare, compensation, details of United Spinal’s “Spinal Network” of Apply at unitedspinal.org/pdf/scholarship. rehabilitation, and other benefits offered by U.S.-based chapters, affiliated support groups, pdf, or call 925/846-1848 for more information. the U.S. Department of Veterans Affairs. Ask SCI rehab hospitals and business partners. VetsFirst, our call center and online help desk, Some of the other presentations focused on Myoelectric Orthotics connects with over 2,000 veterans and their topics such as “Upper Extremity Reconstruc- caregivers annually, offering assistance with tion Options in SCI,” “The Transition from for the Masses questions on military separation, claims ap- Pediatric to Adult Care: Key Elements and United Spinal Association recently announced peals, and state benefits. The VetsFirst website Challenges,” and the “Symposium on Inconti- that it has entered into a partnership with provides veterans and their family members nence and Sexuality.” The conference offered Myomo, Inc. to raise awareness of the benefits and caregivers timely news and information, many breakout workshops allowing attendees of the MyoPro myoelectric upper limb orthosis including guides on self-help, state benefits, to pick and choose the presentations that ap- — designed for individuals with spinal cord separating from the military, as well as exclu- pealed most to them. injury, brachial plexus injury, stroke, MS, ALS sive feature stories on VA funding, health care, This international assemblage of SCI/D and other neuromuscular disorders. and compensation. basic researchers, hospital program directors “We are excited to be partnering with

JULY 2015 45 News

Member Profile:Tyson Gentry Knowing that friends, want to become the Ron- family and even strang- ald McDonald House of ers are thinking about spinal cord injuries initially and supporting you and expand from there,” can make all the differ- he says. In this photo, Myomo’s myoelectric ence in the wake of a They got nonprofit orthotic is being used to help rehab a traumatic injury. Tyson status last December and man’s arm after he had a stroke. Gentry learned that first launched the Foundation’s hand when he was para- website in February. Right Myomo to educate our members lyzed trying to make a now they are focusing about the benefits of this life-enhanc- catch during an Ohio on assisting people in ing technology that offers individu- State football practice in Ohio and Florida, where als the opportunity to regain their the spring of 2006. they live. Once they get independence,” said Joe Gaskins, “When I was in the Gentry’s foundation helps with travel the word out about their United Spinal’s president and CEO. hospital, Ohio State costs so loved ones can support people services and get settled in, “Our unique, patented myoelectric fans were sending cards with SCI when they need it most. they hope to grow to serve orthotics are powered braces that en- and get well letters and all 50 states. able a growing number of individuals things like that and some people sent my “Our biggest detriment right now is that no- with upper extremity paralysis due parents gas cards because they heard that it body knows that we exist, so obviously we are to spinal cord injury to move their was a two hour drive from my home town to trying to get in touch with SCI units in Florida arms again and to function more self- Columbus and they wanted to help with al- and Ohio to just spread the word and get case reliantly,” said Paul R. Gudonis, CEO leviating the cost of traveling,” Gentry says. managers to know that we’re out there and the of Myomo, Inc. “That always stuck with me.” services that we provide,” says Tyson. “Our myoelectric orthotics help Gentry wound up as a C5 quad but didn’t let One place where they definitely know the individuals with arm paralysis per- that stop him from finishing his degree, getting Foundation exists is Buckeye Nation, Ohio form activities of daily living such as married and eventually obtaining a master’s State’s famously rabid fan base. cooking, feeding themselves, carrying degree in counseling. “I grew up in a suburb of Columbus so I Nine years later, Gentry has launched knew Buckeye Nation was so strong,” says household objects, and in some cases, his own nonprofit to help others the way Megan, “but the way people that don’t know returning to work,” he added. his supporters helped him. The New Per- Ty personally but remember his story have As part of its partnership, Myomo spective Foundation provides funding for rallied around the Foundation and how much will be providing educational programs travel and lodging so that the families and support and encouragement they’ve given has and focus groups for United Spinal friends of people with new spinal cord just been so amazing.” members throughout the year. The injuries can be there to support them in the Much of the Foundation’s funding to this focus groups will take place at upcom- hospital and during rehab. stage has come from sales of prints of a painting United Spinal chapter meetings and “People have hospital bills and everything ing by Tyson that speaks to Buckeye fans’ favor- include presentations, demonstrations else that gets thrown onto your plate after an ite pastime: beating Michigan in football. His of the MyoPro myoelectric orthosis, pa- injury, and we just thought that travel expenses senior class was the first to beat Michigan five tient experience stories and discussions were something that families shouldn’t really years in a row. Each year the team did so, play- in support of educational outreach. have to worry about,” says Gentry. “What’s ers received a pair of gold pants. Tyson painted Myomo will also provide educa- important is that they can be there by the side the five pairs of pants and inscribed them with tional material for United Spinal’s of the individual who is in the hospital.” the Michigan game scores and the headline New Beginning backpack program Gentry and his wife, Megan, have been “How firm thy friendship …” He has sold 130 in which 5,000 backpacks contain- developing the concept and logistics behind of 200 prints and says they have inspired many ing information pertinent to newly the Foundation over the last few years. “We more donors to give substantial amounts. spinal cord injured patients are Megan says that even more than the paint- ings, it is Tyler’s attitude and personality that distributed annually. inspire donors. “People see him in the way that he is and how positive and happy he is all Advocates Roll on the time,” she says. “He radiates it and it really the Capitol draws people to him.” Disability advocates from all over the For more information, visit www.newper- nation assembled in Washington, D.C., spectivefoundation.org or send mail to New June 7-10 for the 4th Annual Roll on Perspective Foundation, 10801 Starkey Rd., Suite 104-223, Seminole, FL 33777. Capitol Hill. Check back next issue for an in-depth report.

46 NEW MOBILITY News WE ARE Chairskating Home Buying Uninformed Consent?

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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 PARA/MEDIC A Non-Surgical Option For Shoulder Repair

By Bob Vogel

Q. I’m 55, in my 30th year as a T6 para. I start- repair and regeneration, and “they are very to give up mono-skiing,” says Waddell. An ed exercising after a long layoff, overdid it and potent.” A 2008 article on PRP in Current orthopedic surgeon looked at the MRI and my right shoulder suddenly became very sore. Reviews in Musculoskeletal Medicine says recommended surgery. Waddell resigned I tried working through the pain, which made while the average person’s blood is made himself to surgery and a long stay in a nurs- it worse. Transfers are painful and it hurts to up of 6 percent platelets, PRP increases ing home during recovery, with no guaran- push my chair or lift my arm above shoulder platelet count to 94 percent. The concen- tee of success. level. An MRI revealed multiple, partial tears in trated nutrient and growth factor-rich PRP Then he heard about Ibrahim through my rotator cuff. is injected directly into a damaged tendon a friend. When Ibrahim examined him, I was told I can try physical therapy, but or ligament and stimulates healing. using an ultra sound, he found partial tears am likely facing shoulder surgery. I dread PRP therapy is generally done in a doc- in Waddell’s bicep tendon, anterior and spending two to three months in a nursing tor’s office and takes about 45 minutes. posterior labrum (area around the socket), home with my arm in a sling. A friend told About an ounce of the patient’s own blood deltoid, and rotator cuff. In 2013 Waddell me about a new technique to fix rotator cuff is drawn and placed in a centrifuge to had three PRP procedures, one in February, tears where they take some of your blood isolate the platelet-rich plasma, which is March and May. “It worked!” he says. “My and spin it down to a concentrate, then then loaded into a syringe. Ibrahim says a shoulder started to feel better in a couple inject the concentrated blood into the tear, key to successful PRP treatment is using an of weeks. Now the shoulder pain is com- which enables it to heal without surgery. It ultrasound probe to see the exact location pletely gone, and with physical therapy sounds almost too good to be true. Is there of the tear in real time so the PRP can be and steady working out, my shoulder such a procedure? If so, how long does it injected directly into the damaged area. strength is at 95 percent and I’ve returned take and does insurance cover it? Most partial tears require between one and to my active lifestyle.” — Chip three treatments. A waiting period of four If you are thinking there must be a to six weeks is used to determine if an addi- catch, there is — most insurers, including he procedure your friend is refer- tional treatment is needed. Medicare, won’t pay for it. Ibrahim says that ring to is called platelet rich plasma Ibrahim says he has treated a number although there are many studies show- therapy. PRP was developed in the of wheelchair users. In 2010 he received ing the efficacy of using PRP in minimally 1950s to aid jaw healing during a grant from the Sam Schmidt Paralysis invasive injections, the studies are small. Tdental procedures. It started to be used in Foundation for a pilot study that followed And because PRP is FDA approved with no orthopedics and sports medicine about eight people with SCI who had PRP to suc- patents, there isn’t any money to fund the 10 years ago and is often used by profes- cessfully treat shoulder tears at the bicep. large size studies that insurers want to see. sional athletes, notably major league One of those people is Chris Waddell, In addition, there are studies that confuse pitchers, to speed healing and avoid 46, a winter and summer Paralympic med- the issue by looking at the wrong applica- season-ending surgery. alist, speaker and author in his 27th year as tion — specifically using PRP in conjunc- To get a handle on how PRP works, I a T10-11 complete para. In 2010 Waddell tion with surgical repair. Surgery, when turned to Dr. Victor Ibrahim, a physiatrist, hurt his left shoulder by trying to get back warranted, causes a great deal of inflamma- sports medicine doctor and director of in shape too quickly and was in constant tion to the injured area, which overwhelms the Performance and Musculoskeletal pain. In 2012 the shoulder gave out dur- the healing response of PRP, says Ibrahim. Regeneration Center in Washington, D.C. ing a complex transfer. An MRI showed a According to AboutHealth.com, PRP Ibrahim, having treated over 5,000 people slight tear in his rotator cuff, but a physical treatments cost between $500 to $1,000 with PRP, explains that blood platelets examination showed significantly more per injection, and costs can vary widely contain nutrients and growth factors that shoulder weakness than the MRI sug- upwards. Ibrahim says his clinic charges start and speed up the process of tissue gested. “Transfers were painful, and I had $1,000 for the complete treatment — on a

48 NEW MOBILITY sliding scale. “We have never turned any- felt better in about a month — meaning he therapy has done the job. However, if my one away due to lack of money,” he says. had no pain and could slowly, carefully start shoulders ever get to the point of need- One physician who recently learned physical therapy. “The partial tears healed, ing surgery and PRP looks like an option, how to do PRP is Dr. Jerome Stenehjem, but the complete tear had pulled apart, so for me it would be well-worth the out-of- medical director of Sharp Alison deRose it didn’t heal, which only affects my abil- pocket cost to avoid spending months in a Rehabilitation Center in San Diego. “PRP ity to lift my arm over my head. I built my nursing home. does work,” he says. “The science makes strength back up and the following year Chip, I hope this has given you the infor- sense, and in the right hands it can be did 50 wheelchair marathons in 50 weeks.” mation you need to investigate further. effective. Shoulders are one of the better As with any medical procedure, it is Keep us posted. joints to inject. I have been gearing up important to choose a doctor who is well- If you have a health question, contact Bob and plan to do PRP injections on an older versed in the specific therapy. Currently Vogel at [email protected]. patient of mine with paraplegia and shoul- there are about 200 physicians in the der degenerative joint disease.” United States who do PRP, according to Another PRP recipient is Paul Erway, Ibrahim. He says it is important to find a Resources 57, a wheelchair racer in his 35th year as physician who does a competent evalua- • Performance and Musculoskeletal a T4 para. In 2013 Erway hurt his right tion and uses some sort of guidance, like an Regeneration Center, 202/681-PMRI; info@ shoulder. An MRI diagnosed three partial ultrasound device, to inject the PRP exactly pmrcenter.org, pmrcenter.org tears and a complete tear on the top of the to the injury. And steer clear of someone • “Shouldering the Load,” www.newmobil- shoulder. “I was in a lot of pain and went who is just experimenting or trying to sup- ity.com/2005/09/shouldering-the-load/ to see the sports doctor for the University plement their practice. Try and get a feel if of Kentucky men’s basketball team. He they are committed to the science. • SmartDrive, 800/637-2989; max-mobility. mentioned PRP therapy, saying he had 10 Over the years I’ve learned that rest and com papers on his desk about PRP, and sug- ice are the first line of defense for a sore • Use of Platelet Rich Plasma for the gested I look into it.” shoulder. I now use a SmartDrive power Treatment of Bicipital Tendinopathy in Erway located Dr. Steven Johnson, unit on my manual chair, which enables me Spinal Cord Injury: A Pilot Study, www.ncbi. medical director for Evergreen Medical to rest and rehab my shoulders. I’m hop- nlm.nih.gov/pubmed/23459023 Center in Jefferson, Ind. “He used a hand- ing it helps me avoid shoulder breakdown. • 50 Marathons in 50 Days, guided ultrasound to inject the PRP right When the soreness doesn’t go away, a visit www.50abilitymarathons.com/featured- into the tears,” says Erway, whose shoulder to my primary care physician and physical athletes/paul-erway/

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JULY 2015 49 MOTORVATION

Recreational Vehicles: At Home on the Road By Uncle Mike

raveling can be a logistical chal- industry. More manufacturers are designing the motorhome full time, although that lenge for people who use wheel- their vehicles to meet the needs of those required some sacrifices. “Downsizing was chairs and similar mobility devic- who use mobility devices. For instance, Born tough, initially,” she says, “but once all of our es. So much can go wrong, includ- Free RV of Humboldt, Iowa, is selling a class excess items were disposed of, it was a huge ingT potential damage to mobility devices feeling of relief. It’s surprising what we can C motorhome aptly named the Mobility RV. during air travel, challenges finding acces- Each Mobility RV is constructed to match do without when there is no room to store sible transportation at your destination, the needs of the buyer and can be ordered things we don’t really need.” and unknown factors regarding accessible in different sizes up to 33 feet in length. The couple visited all of the lower 48 hotel accommodations. To avoid these The company has a presence at Abilities states and much of Canada during that problems, many people have decided to Expos and targets their advertising to reach decade. They met some wonderful people take matters into their own hands by pur- groups that value the lifetime of indepen- during their travels, as those who stayed chasing or modifying recreational vehicles. dent travel that accessibility provides. where they parked at night were always With an RV, wheelers can travel when and very friendly. Kaiser noted an interest- where they want, in circumstances they ing demographic regarding these other control — along back roads, stopping at Motorhomes and Coaches travelers. “I was initially surprised at how parks and other attractions along the way, Sandy Kaiser of Everett, Wash., values the many people, men and women of all ages, or keeping up with high-speed traffic on 10 years that she and her husband spent travel alone,” she said, “but it was probably the nation’s interstates. traveling the United States in their Thor because the group that travels like this During winter months, visitors to warm Windsport 32-foot motorhome. The vehicle watches out for each other.” weather locations will find thousands of RVs was equipped with a wheelchair lift plus Benefits of RV travel are the ability to in communities of people who follow the accessibility improvements in the bathroom sleep in the same bed every night, use of changes in climate — snowbirds. In sum- and kitchen, since Kaiser uses a power a private bathroom, and a kitchen where mer they head back north, visiting what- wheelchair due to a childhood bout with healthy food purchased at any grocery ever locations interest them along the way. polio. It also had hand controls so that she store can be prepared at a much lower Many of the snowbirds are near or past could take her turn driving. The couple price than fast food or restaurant options. retirement age, so the locations where they sold their house near Seattle and lived in Another benefit is the ability to bring family stay or park during their pets along for the ride. For the travels are often acces- Kaisers, that included both the sible, and their vehicles family dog and cat. are equipped with adap- Newell Coaches of Miami, tive equipment to allow Okla., has sold several acces- safe and comfortable use sible motor coaches that are of their traveling home. designed and built to meet the The potential market needs of their customers. Gerry value represented by peo- Davis, of Glenarm, Ill., drives ple with disabilities and a 45-foot Newell coach to Jesse Case helped to design a long, remove- aging travelers is not lost able ramp to be easily erected, disassembled accommodate the needs of his on the recreational vehicle and stowed. adult daughter, Charissa, who

50 NEW MOBILITY sustained a brain injury while a teenager. ers and on websites like Craigslist. Camping Trailers The wheelchair lift and interior modifica- Doc Cadle of West Baring, Wash., For Jesse Case of Orting, Wash., owning tions, like a ceiling-mounted lift and wider needed to find a RV that would allow him an RV is not about cross-country travel. aisles, ensure that the family can travel full access to the vehicle while accom- He recently bought a Coleman camping together in comfort. modating a hitch-mounted carrier for his trailer, partly because it has a 29-inch wide According to Davis, “It’s a relief to know mobility scooter that he must use due to entry door and roomier interior dimen- we don’t have to worry about accessibility polio in childhood. He originally owned a sions than some other trailers that are of public transportation or lodging on our 22-foot Chinook motorhome that he sold, on the market. Those wider dimensions family trips. For people planning to pur- then purchased a used 23-foot Winnebago allow for easier maneuvering in his manual chase a RV, it is important to envision the from Craigslist. That low-mileage second- wheelchair, as the only significant interior interior layout and how it will work with hand vehicle, which provides reliable trans- remodeling required has been widening the mobility device you use.” That advice portation to campsites throughout the of the bathroom door. To access the RV, comes both from a user’s perspective and Northwest, cost only $5,000. While that is Case designed a removable ramp system as a professional who has been responsible still a significant investment, it is much less that was then built by Handi-Ramp of for several projects to modify vehicles of all than the price of a new luxury motor coach, Libertyville, Ill. The ramp can be easily types. Davis is regional manager of United which can exceed $1 million. erected and disassembled, then stowed Access in Central Illinois. It is also possible to make modifications and carried in a rack on the outside of the Nick Farrell of Lewisville, Texas, paraple- to smaller vehicles that will make them trailer. He has found several accessible gic due to a 1978 oil field accident, bought more accommodating for travel or camp- campsites within easy driving distance from home, so the family visits them whenever possible. According to Nick Farrell, there are plenty of reasons for owning a recreational vehicle. “I am far more comfortable and self-sufficient in my motorhome than I am in my house,” he says, “and it also means that I will never be treated like a piece of luggage on an airplane again.” For Doc Cadle, having a hitch-mounted carrier There are obviously many others who for his mobility scooter as well as full access to agree with him. the interior of his RV, is a must. a 35-foot motorhome four years post- ing. Bernhard “Bernie” Weihs of Specialty Resources injury. In 2004 he sold it and bought a used Transportation & Services in Quakertown, • Recreational Vehicle Industry Association, 45-foot Newell motor coach that serves his Pa., recently modified a Mercedes Sprinter 703/620-6003 (eastern regional office) and needs even better. The RV has a wheelchair van for a client who uses a wheelchair. She 818/248-6600 (western regional office); lift, hand controls, swivel driver’s seat and prefers to avoid public restrooms when www.rvia.org was built for maximum accessibility inside. she is away from home, so they installed • National Mobility Equipment Dealers The author and motivational speaker plans an overhead lift system for access to a Association, 866/948-8341 or 813/264- to sell his house and live in the motor toilet in the back of the van, along with a 2697; www.nmeda.org coach full-time during the next couple of privacy curtain. The Surehands tracked lift • Mobility RV, 800/247-1835; bornfreerv@ years as he travels around the country on system can also transport her to the front bornfreerv.com, www.bornfreerv.com a speaking tour to promote his book. He passenger seat. With the addition of a fold- • Specialty Transportation & Services, can tow his pickup behind the coach, so he down bed in back, the van can provide Bernhard Bus Services, 215/679-8943; has accessible local transportation available comfortable and safe surroundings for [email protected], www.bern- wherever he stays. those who want to experience camping hardbus.com without much of the discomfort associated • Newell Coaches, 888-3NEWELL or Other Options with staying in a tent. 918/542-3344; www.newellcoach.com Not everyone can afford a large motor Specialty Transportation has made • Handi-Ramp, 800/876-7267; www.handi- coach, especially a new one, but there are similar modifications to a variety of vans, ramp.com/ other options available. According to the and even a former Greyhound bus, as • Coleman Trailers, 419/476-4478; www. Recreational Vehicle Industry Association, have many other members of the National colemansales.com/bodytype/travel-trailers/ there are over 300,000 RVs manufactured Mobility Equipment Dealers Association. • Surehands Lift Systems, 800/724-5305; in the United States each year, and thus After all, the lifts and hand controls that www.surehands.com there are hundreds of used vehicles on the work for an accessible sedan or van can be • Thor Windsport RVs, 800/724-5305; wind- market at any given time, both from deal- used in a RV of any size. sport-rv.com

JULY 2015 51 ERVIN Jerry’s telethon was like a tornado. Part of what made it so dangerous and destructive was that it spawned others like it. By Mike Ervin

Son of Telethon

et us begin this session with a quiz: because, mercifully, they aren’t so obvi- If you Google up video clips of Q: What’s the difference between ous anymore. Every year it seems there TeletonUSA, you’ll see. The musical La telethon and a teleton? A: A are more and more young people who scores for the sad cripple profiles begin teleton does not have the letter “h” in it. have never heard of either Jerry or his like a dirge, as we hear about this Other than that there’s no difference. telethon. You used to have to live in a cripple’s solitary struggle and incredible Oh wait, there is one more differ- cave to achieve such a divine state of bravery. But then the tone brightens ence. A telethon is a marathon, schlocky blissful obliviousness. These kids today and the tempo rises as it is revealed that television variety show designed to raise sure do have it soft. there is a rehab facility to which this gobs of money by casting cripples in the This brings us to another differ- cripple can be shipped where he/she most pathetic and pitiful light possible ence between a telethon and a tele- can receive therapies and treatments and promising to bring hope to their ton. The telethon is no more. In May, which will result in — well, that part’s empty lives through the intervention the Muscular Dystrophy Association not so clear. But that’s not the point! of medical professionals. A teleton, on announced it would finally be discon- The point is that there is a rehab facility the other hand, is a marathon, schlocky tinued. Recent telethons were sans Jerry where cripples can receive treatments television variety show designed to raise and were only two hours long. That was and therapies. Isn’t that enough? And gobs of money by casting cripples in the a positive development in the sense that the music swells to a joyous crescendo most pathetic and pitiful light possible cripples were being demeaned from of hope as the cripple smiles a labored and promising to bring hope to their coast to coast for 19 fewer hours every but sincere smile. empty lives through the intervention of Labor Day weekend. But now the whole In the studio are the little poster medical professionals, in Spanish. hideous exercise has been swept into criplets dressed in their Easter finery. There was a time not long ago when the dustbin of history, And sometimes they rise and “walk” the TV airwaves in the USA were satu- Unfortunately, Jerry’s telethon was across the stage to thunderous stand- rated every Labor Day weekend with a 21-hour variety show known as the Jerry like a tornado. Part of what made it so ing ovations. Lewis Telethon. The stated purpose was dangerous and destructive was that This Labor Day weekend, for the first to raise money for people with muscular it spawned others like it. Easter Seals time in my adult life I can venture out dystrophy, aka “Jerry’s Kids.” and United Cerebral Palsy had tele- without fear of being buried in the rub- This went on for decades. This show thons at one point. But they both let ble left behind by the tornado of cripple made millions of cripples cringe in theirs go long ago. clichés that was Jerry’s telethon. But I’m abject embarrassment because it was, But still swirling and churning out not sure how I’ll react. I may be like the essentially, the cripple equivalent of a there is the annual TeletonUSA. This traumatized people who remain in the minstrel show. Some of these embar- 28-hour Spanish-language production bomb shelter after the all-clear sounds, rassed cripples rose up and protested has many of the same key elements as waiting to be sure the barrage is finally and they got a lot of attention because, Jerry’s telethon — the flashing tote board, over. It may be a few years before I can well, when Jerry’s Kids turn on him, the the pseudo-Vegas glitz. And of course it relax and feel totally safe, knowing that irony is too delicious to ignore. features the most essential element of all the Son of Telethon is still on the loose I’m stating these once-obvious facts — the sad sad sad sad sad sad cripples. and living in exile.

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

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SEXY SELF-LOVE: “You can call it a massive orgy, play party, sex-romp, or whatever you want. You can suggest that tax payer funds are funding a swingers event. That’s all well and good, but let’s be honest for one second about what the event is actually about. Over and above the media hype that is salivating over the buzz words, this event is about providing access to people living the experience of disability to be part of an experience they are so often denied. This event is about putting disability and agency over one’s body at the forefront.” — Andrew Morrison-Gurza, about Deliciously Disabled, which will take place this August in Toronto, www.huffingtonpost. PLAYFUL LOVE: com/2015/06/10/disabled-sex-party_n_7550924.html Girlfriend: What do you want to wear today? Me: Khakis and that red button-up. Girlfriend: So my leggings and a T-shirt?

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NEW LOVE: “We met on a dating site 12 years ago. I sent her a message saying: ‘I want to let you know up front that I’m in a wheelchair, because I can’t hide it.’ And she wrote back: ‘Why? Is it bright yellow?’” — From “Humans of New York,” which posts photos and quotes of everyday New Yorkers. Follow Humans of New York on Facebook, Twitter or Tumblr.

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