theHUB THE CENTER OF THINGS
BEYOND THE VELVET ROPE NIGHTWHEELING IN LA
ZEN AND THE ART OF MANNING UP
THE GYM EVOLVES: EXERCISE IS MEDICINE
OUR COMMI TM EN T
theHUB AT THE CENTER OF EVERYTHING
contents premiere issue 21
of Southern California
14 ANDREW ANGULO: THE CAN-DO MAN!
21 BEYOND THE VELVET ROPE: NIGHTWHEELING IN LA
26 THE EVOLUTION
OF POST-REHAB: ACCESSIBLE EXERCISE
30 ZEN AND THE ART OF MANNING UP!
34 HUB TRIBUTE:
BEYOND THE VELVET ROPE NIGHTWHEELING IN LA!
TECHWORLD: THE HANDHELD FUTURE IS NOW
THERE’S MUSIC, dancing and fancy cocktails. Being young, hot and severely able-bodied helps, but so does arriving in a wheelchair. Come out of the shadows, join the fun.
THERE’S A LOT MORE than texting and email going on. There is tremendous power in the modern handheld device, creating all sorts of options for users with disabilities.
6 CONTRIBUTORS AND ADVISORS 10 NEWS NOTES ETC. THE SOCAL BEAT 11 CALENDAR SPECIAL EVENTS IN SOCAL
4 EDITOR’S NOTE READY, SET...GO
12 HEALTH IS WEALTH EAT MORE YOGURT 16 TECH WORLD HANDHELDS RULE 18 SWIMMING UPSTREAM GREG THOMPSON 25 NON-PROFIT SPOTLIGHT THE SEEDS OF SELF-SUFFICIENCY
32 URBAN JUNGLE CARLESS LA!
36 BUSINESS PROFILES 38 GEAR GALLERY COOL TOOLS
30 Premiere Issue - thehubsocal.com 3
theHUB at the center of everything
editor’s note we start a new chapter
Volume 1, Number 1 • Editor Sam Maddox MANAGING EDITOR Megan Wiskus Art Director George Kenton GRAPHIC DESIGNERS David Norby, Aaron Roseli, Gary Zsigo Director of Community Affairs Mayra Fornos
Photo BY Christopher Voelker.
The center of things, that’s where it’s
too: Technology is our friend. We spotlight gear happening, and that’s where we are coming and innovation that make things easier and safer. from. Welcome to the first edition of The Hub Our “Tech World” piece (page 16) will help you Southern California! This is a magazine by and get the most power from your handheld, and, for the SoCal community of people living with then, our “Urban Jungle” feature (page 32) will a disability, inarguably the most active, innovahelp to best use that device to navigate public tive and altogether interesting clump of PWD transit. And finally, in every issue of The Hub, we on the planet. There is wonderful personality to share what people and organizations are makshare, plus news, resources and tools to explore ing a difference in SoCal. and enjoy our awesome The Hub owes speregion—a grand territory cial thanks to a few key from San Luis Obispo to people. Mayra Fornos, Chula Vista, from Santa founder of Ralph’s RidMonica to San Bernardino. ers, introduced magazine And if you don’t already publisher Terry Carroll to live here, you’ll want to. the LA disability world. He So, let’s join together to saw vibrancy and depth, Xander Mozejewski weaves his magic reflect and celebrate the and to be sure, a market. richness of the culture, to serve and motivate the Steve Heimberg, M.D., an LA doctor-attorney community toward self-awareness and strength. who shares Carroll’s long-term vision for the This first issue of The Hub embodies several magazine, has offered support from the start. A themes: First, there are not many things offteam of advisors (page 6) has come on board to limits in the fun department if you set your mind ensure that The Hub is topical and to safeguard to it. Check out the cool “Nightwheeling” piece our veracity. (starting on page 21) wherein our intrepid team One last thing: Ideas are the coin of the realm of well-wheeled hub-clubbers takes on the LA in journalism, so keep them flowing. Tell us who’s demimonde. This we also know to be true: Acmaking news. Is there a pomposity to skewer, an tivity is good for everybody, and we show you injustice to resolve? We’ll hold the center, you a few specialty gyms (starting on page 26) that stay in touch—email us at info@thehubsocal. will help you figure out fitness. And we know this com. —Sam Maddox
4 thehubsocal.com - Premiere Issue
Contributors Olivia Almalel, Andrew Angulo, Toby Forrest, Xander Mozejewski, S. Nelson, Vanessa Osman, Allen Rucker, Katie Sharify, Ellen Stohl, Mark Willits • Advertising Sales Valerie Teague Disability Resource Link, Inc. 310-902-2908 email@example.com • Advisory Board Aaron Baker, Dan Diestel, Toby Forrest, Jenni Gold, Steve Heimberg, M.D., Chelsie Hill, Tom Hollenstein, David Moore, Tami Ridley, Andrew Skinner, Briana Tavano, Alan Toy
THE HUB southern california 800 W. Sixth Street, Suite 1500 Los Angeles, CA 90017 p 213-347-5400 | f 916-596-2100 thehubsocal.com firstname.lastname@example.org • The Hub Southern Califonia is published by
Publishers Terence P. Carroll and Wendy L. Sipple Style Media Group, Inc. 120 Blue Ravine Road, Suite 5 Folsom, CA 95630 p 916-988-9888 | f 916-596-2200 stylemg.com email@example.com Cover photo by Xander Mozejewski.
Jen Goodwin Permobil user since 2013
Black is the latest look in mid-wheel drive. Get ready to make a statement with these non-marking drive tires and casters. Available on the M300 and M400, the standard package includes silver rims with either 6â€? or 8â€? casters as well as solid or pneumatic drive tires. For something a bit edgier, go for the custom matte black casters and drive wheels. Youâ€™ll always be on trend with Permobil. Learn more at Permobil.com
Go behind the scenes
CONTRIBUTORS AND ADVISORS
The Hub is the sum of many parts, and, like any magazine, those parts are people. Our goal was to invite the best and brightest in and around the community to be a part of this endeavor. Each had a part in this magazine, and, there is no doubt, we are all the better for it. We thank them for their input, and we are proud to introduce them to you.
CONTRIBUTORS Olivia Almalel, writer Almalel has been a Los Angelesbased pharmacy technician for 20 years. She was paralyzed by a hit-and-run driver in 2008, T10. “Writing became the best form of rehab,” she says. “I laugh, I 6 thehubsocal.com - Premiere Issue
sing, and live by the motto: ‘Get through it, get over it, and get on with it!’” Andrew Angulo, photographer Spinal cord injured in a motorcycle accident in 2009, Angulo is founder of Disabled Life Media, a news and resource website. Xander Mozejewski, photographer Mozejewski was injured in a motorcycle accident in 2011. He lives in Studio City, rolls where he wants to, takes a lot of photographs and posts them to instagram.com/xanturd Vanessa Osman, writer Osman received a degree in
communications, management and public policy from Emerson College in Boston. She has previously worked in Dubai in public relations, event management and marketing. In 2005, she was in a car accident where she sustained a C5/6 spinal cord injury. Osman enjoys charity work and has a newfound passion for voiceover work. Allen Rucker, writer Rucker is a Hollywood writer and author of 11 books. His book about becoming paralyzed by transverse myelitis at middle age, The Best Seat In The House: How I Woke Up One Tuesday and Was Paralyzed for Life, was published in 2007. Rucker has taught at USC and Chapman University, and lectures on the subject of disability. Katie Sharify, writer Sharify is finishing her degree in communication law and media policy at the University of Southern California, and hopes to enroll in law school next year. She was injured in 2011 in an automobile accident and was the fifth participant in the Geron embryonic stem cell trial. Ellen Stohl, writer Stohl, spinal cord injured in 1982, Playboy model in 1987; sometimes she describes herself as “Amazon, Barbie, Cripple.” She is a writer, educator, and a professional speaker. “I am a partner—wife and lover. I am a mother. I am a lover of life with unique insights that I strive to share through my work.” Mark Willits, writer In 1997, while in high school, Willits broke his neck, C2/3, resulting in full quadriplegia and the need for ventilator assistance. He went on to complete college
and graduated with a law degree from UCLA in 2008; and later that year, also got married. Willits is active in charity work, follows assistive technology closely and loves to travel.
ADVISORS Aaron Baker Baker, a recovering quadriplegic, founded Northridge specialty gym Center for Restorative Exercise (CORE). He was injured in a motorcycle mishap in 1999, C4/5/6. From near complete paralysis and a hopeless prognosis, Baker has regained a large degree of function. Dan Diestel Diestel owns Diestco MFG Corp., a California company, whose products make life easier for people who use scooters, wheelchairs and walkers. Mayra Fornos Fornos has been an attorney serving the disabled community for more than 25 years. She has received numerous awards and is highly regarded within the legal community. Fornos knows firsthand the needs and hardships people with disabilities face having herself been married to a C6 quadriplegic man. She is a tireless advocate for people with disabilities and the founder of Ralph’s Riders. Toby Forrest Forrest is an accomplished actor who has appeared on stage, television and in movies. He has performed comedy and is the lead singer for rock ‘n roll band Cityzen. Forrest broke his neck diving in the Grand Canyon in 1998. Jenni Gold Gold is a film director and member of the Director’s Guild
Steve Heimberg, M.D.
of America. Her documentary CinemAbility explores how film and television have portrayed disability through history and how popular culture impacts society’s attitudes toward people with disabilities. Gold grew up with a disability and has used a wheelchair since age seven. Steve Heimberg, M.D. Heimberg has both a medical degree and a law degree, and has build a top-tier personal injury law practice in Los Angeles, involving medical malpractice and catastrophic injury. He is active in local charitable causes such as Ralph’s Riders. Heimberg is a co-founder/supporter of Empowering Youth in Cambodia, a group of schools and programs for extremely disadvantaged children in Cambodia. Chelsie Hill As a high school senior in 2010, Hill left a party with a friend who had been drinking; the friend’s car crashed into a tree, leaving Hill a T-10 paraplegic. A year later, Hill and her father started The Walk and Roll Foundation to educate young people about the dangers of drinking and driving. Hill is cofounder of the Walk and Roll wheelchair Dance Team. Tom Hollenstein Using the wheels of his powerchair as brushes, Hollenstein has developed a layered, colorful abstract painting style that has established him in the Los Angeles art world. He was injured in 1985, C5, and is very involved in charity work. David Moore Moore, a native Californian, keeps his ear to the ground
and his wheels in the groove in Santa Barbara. He was injured 35 years ago in an auto accident. Tami Ridley Ridley, a C5/6 quadriplegic from a diving accident in 1984, is an advocate for inclusive fitness and healthy diets to optimize aging with a spinal cord injury. Ridley has worked as a stockbroker, lawyer, professor, independent living counselor and restaurant owner. Her interests include yoga, dogs, farming, food and wine. Andrew Skinner Skinner was injured in a 2004 snowboarding accident; he is a C6 quadriplegic. In 2008, he started the Triumph Foundation, a non-profit organization that connects people dealing with paralysis to resources, activities and peer support. Briana Tavano In 2002, when Tavano (née Walker) was 23, she was spinal cord injured in an auto accident. She has never stopped pursuing the active SoCal lifestyle, including her love of dance. Tavano co-founded the first hip hop wheelchair dance team. She wrote the book, Dance Anyway, recounting her life since the accident. In 2014, Tavano graduated from college and got married. Alan Toy Toy is a community organizer, civil rights activist and a seasoned actor in motion pictures and television. He is the executive director of the Westside Center for Independent Living. Toy, who contracted polio when he was three, has often spoken and written about mass media depictions of disability.
Premiere Issue - thehubsocal.com 7
$28,995 X-WAV Conversion of the Honda Pilot
Spring into saving with the X-WAV conversion of the Honda Pilot Call today and mention this ad for
off your conversion!
SCHEDULE A FREE DEMO ASK US ABOUT OUR FINANCING OPTIONS HASSLE FREE WARRANTY UNPARALLELED SAFETY
Schedule Your FREE at-home Pilot Demo Today! 1-800-625-6335 â€˘ www.FreedomMotors.com
Conversion Conversion of the of the KIAKIA Soul Soul
Honda Honda Odyssey Odyssey Conversion Conversion
Call for Call more for more details details ... ...
Conversion Conversion of the of the FIAT FIAT 500500
Conversion Conversion Dodge Dodge and Chrysler and Chrysler Conversions Conversions
Call for more details ... ... Call for more details
Conversion Conversion of the of the Toyota Toyota Sienna Sienna
Call Call forfor more more details details . .. . .
Super Super Wide Wide rearrear entry entry
Manual Manual or Automatic or Automatic rear door rear door conversions conversions available. available.
CallCall Today Today To Learn To Learn More! More! 1-800-625-6335 1-800-625-6335 • www.FreedomMotors.com • www.FreedomMotors.com
Toyota Toyota SideSide Conversion Conversion
The top Theside top entry side entry conversion conversion van van on the onmarket. the market.
NEWS NOTES ETC. the socal beat
ADA at 25; Legacy Tour in LA The ADA Legacy Tour (adalegacy.com) will travel around the U.S. to build excitement and awareness of the 25th anniversary of passage of the Americans with Disabilities Act. Its fifth stop will be in Los Angeles, March 6 - 8, at the Abilities Expo, downtown at the LA Convention Center. The year-long tour began last July in Houston, home of President George H.W. Bush, who signed the ADA into law. During the tour, visitors in each city can view displays of historic photos and documents. The tour ends in Washington, D.C., in July, as part of the ADA 25 Gala, March and Rally, hosted by the National Council on Independent Living.
Ricon Pays Fine for Defective Lifts Ricon Corp., based in San Fernando, will pay a $1.75 million civil penalty and has agreed to increased oversight by the National Highway Traffic Safety Administration (NHTSA) for continuing to sell defective wheelchair lifts even after a widespread recall had been put in place. “This company’s failure to protect the public from a product known to be a safety risk is absolutely unacceptable,” Transportation Secretary Anthony Foxx said. “Manufacturers must meet their safety obligations, and when they don’t, we will be there with strong enforcement action.” In September of 2012, Ricon recalled more than 4,000 wheelchair lifts that had been sold to manufacturers of vans and buses. The recall involved a cable that could spark a fire. 10 thehubsocal.com - Premiere Issue
Clinical Trials at UCLA Three clinical trials are in the works to test the safety and efficacy of UCLA-developed spinal cord stimulation on people with spinal cord injuries. One, using epidural stimulation, is currently enrolling; the second and third, not yet recruiting patients, will explore arm and hand recovery, and bladder function. The latter two will utilize a cuttingedge transcutaneous stimulator—no surgery required—developed by NeuroRecovery Technologies (NRT), a company co-founded by UCLA professor Reggie Edgerton. NRT is awaiting final regulatory approvals but hopes to enroll patients soon. For information on the trials, contact Dr. Daniel Lu at the UCLA Spine Center, firstname.lastname@example.org
Best Beach? Name Your Favorite SoCal and sunny beach sort of go together, right? So which are the best beaches for accessibility? Santa Monica and Venice are cool, but here’s one that you may not have been to: It’s called Rehab Point, with a 900-foot concrete pathway in and around the sand dunes at Oxnard Beach, in Ventura County. The path was championed by the late Ed Hunt; he loved the ocean but couldn’t get close after he was paralyzed by a stroke. Rehab Point opened in 1992. Got a favorite beach? Send a description to email@example.com. But the company did not stop selling the bad lifts. Ricon later informed NHTSA that it had mistakenly continued to produce and sell 356 wheelchair lifts with the safety defect.
Saving Money, Keeping Benefits Last December, President Obama signed into law the Achieving a Better Life Experience Act, aka the ABLE
Act. This ground-breaking but somewhat limited new law allows people who have a disability that occurred before the age of 26 to open a tax-free savings account to pay for education, housing, transportation, training, health, personal support services, etc. Families may deposit as much as $14,000 annually; beneficiaries can save up to $100,000 before impacting their SSI benefits; Medicaid eligibility will continue no matter how much money is saved. These accounts will be available later this year.
special events in socal
March 7 The Pasadena “Rock n’ Reggae” Charity 5K, Rose Bowl, 1001 Rose Bowl Drive, Pasadena. Benefits NextStep Fitness and people living with paralysis in SoCal.
May 2 -3—Third Annual West Coast Wheelchair Tennis Classic, Balboa Tennis Center, 5651 Balboa Boulevard, Encino. Contact West Coast Wheelchair Tennis Association at 818-429-4435.
nextstepfitness.org/events March 6 - 8 Abilities Expo, Los Angeles Convention Center. Products, services, workshops, dancing, community. Free admission.
March 20 - 22 Ski with the Unrecables, Mammoth. SoCal sports and rec club with the Los Angeles chapter of Disabled Sports USA.
March 6 – 8 Ski trip to Mammoth with the Achievers, Orange County Chapter of Disabled Sports.
March 28 Poker Tournament and Casino Lounge, Killer Shrimp, 4211 Admiralty Way, Marina del Rey. Fundraiser for Life Rolls On.
theachievers.org March 7 2015 Ski-A-Thon, Bear Mountain Resort, Big Bear Lake sponsored by Anthem Blue Cross. Fundraiser participants receive a fullday ticket to Bear Mountain, with line cutting privileges.
liferollson.org March 29 San Diego AccessAbilities Expo, Paradise Point Resort and Spa, 1404 Vacation Road, San Diego.
April 10 – 12 Mammoth Ski Trip, the Achievers.
theachievers.org April 13 2015 PVA Adaptive Cycling Clinic, San Diego. Contact Kelli Kaliszewski at 858-642-3163. April 17 - 19 Ski with the Unrecables, Mammoth. SoCal sports and rec club with the Los Angeles chapter of Disabled Sports USA.
March 14—Meet the Scientists, Reeve-Irvine Research Center. Featuring UC Irvine researchers, plus guest scientists Jerry Silver and Brian Kwon, and wheelchair fitting by Suzy Kim, M.D. reeve.uci.edu
Sports USA, Mammoth Lakes.
disabledsportseasternsierra.org May 3 Outrun the Catcher Car, Santa Clarita. Proceeds support Wings for Life spinal cord injury research.
wingsforlifeworldrun.com/us/en May 30 They Will Surf Again, Santa Monica, hosted by Life Rolls On. Registration opens April 20. 424-272-1992.
April 25 - 27 Wheelchair Sports Festival at Santa Clarita Sports Complex, 20880 Centre Pointe Parkway, Santa Clarita, sponsored by Triumph Foundation.
September 13 -18 VA Summer Sports Clinic, San Diego. Sailing, surfing, track and field events, kayaking and cycling (hand and tandem). Deadline for registration applications is May 1.
April 28 - May 1 Sports Springtacular—Four days of skiing and snowboard instruction for people with cognitive disabilities. Eastern Sierra Chapter of Disabled
Have an event you want to tell everyone about? Visit thehubsocal.com and enter it on our calendar!
Premiere Issue - thehubsocal.com 11
HEALTH IS WEALTH probiotics are as unregulated as supplements by S. NELSON
Question: I figure my immune system must be pretty much shot. Why else would I get bladder infections so easily, and why am I so vulnerable to pressure sores? Is there anything I can do to boost my immunity? Vitamins? Supplements? My friend always tells me about probiotics, yes? Thanks! —Mopez
DID YOU KNOW? Utah Senator Orrin Hatch championed a 1994 law that says the FDA cannot require supplement makers to prove that any of their products work, as long as they avoid specific claims about curing a specific disease. More recently, Hatch successfully fought legislation that would have required supplement makers to register their products with the FDA and thus provide details about their ingredients. According to the New York Times, Hatch has received hundreds of thousands of dollars from the supplements industry over the years.
12 thehubsocal.com - Premiere Issue
Dear Mopez: I will skip the usual lifestyle/diet/ exercise as the onramp to health routine. You’ve heard it, you’re already doing it, I’m sure. Quick answer, yes, you may be able to bump up your immune system. Vitamins, no solid proof. Hey, I take vitamin C if I feel a cold coming on, but there’s no way to say for sure it’s the pill or placebo. Supplements, nothing solid here either to prove they do what is promised, and if you read the news earlier this year about what’s actually in these products, wow, an astonishing 79 percent of supplements tested did not even contain the main ingredient listed on the label. Your St. John’s wort is actually ground up houseplants. Worse than that, many contained plant material that might cause an allergic reaction in an unsuspecting user. Now, about probiotics—not long ago I’d have put this on the health fad list, right next to the paleo diet. They are as unregulated as supplements and are promoted like crazy these days, said to be able to heal diabetes, obesity, heart disease, inflammatory conditions, digestive disorders and even the ultimate malady, aging. But recently I have seen compelling research that may turn out to be good news, especially for those with compromised immune systems, like you Mopez, if I might presume that you too are prone to overuse of antibiotics.
Probiotics are live bacteria that live in your gut, along with an estimated 100 trillion microorganisms—ten times the number of your own cells. Some members of this microbiome are good guys, some are not. Some of the good ones are knocked out by antibiotics. Weaker gut equals weaker immune system; the microbiome is directly related to immune function. Probiotics, to make a complicated story short, can nurture the gut and strengthen your immune response. Research is revealing much about this microbiome. Out of order gut may be related to autoimmune diseases, or even autism. The science literature suggests that our modern dietary preferences may have produced changes in the microbiome; our lack of what has been termed “metabolic fitness” may indeed result in a long list of chronic disorders. In spinal cord injury studies at Ohio State University, scientists have learned that SCI itself causes systemic inflammation, leading to immune suppression; this is especially the case in quads prone to autonomic dysreflexia. In experimental animals with paralysis, however, ingestion of a probiotic resulted in an improved immune response—and this is really interesting—the probiotic, a formulation called VSL #3 (high potency combo of strains, designated for the dietary management of ulcerative colitis and irritable bowel syndrome) also resulted in improved recovery of locomotion function. Should you try a probiotic? Worth a try. Be sure and get one that isn’t pasteurized. Lactobacillus or bifidobacteria are the main strains. Yogurt is a probiotic; make sure it’s got active cultures.
PHoto of gut biome courtesy of The National Institute of Allergy and Infectious Diseases.
eat more yogurt
Because people don’t need… the use of their eyes to have vision the use of their ears to hear each other the use of their legs to move forward the use of their hands to reach their goals Access matters. That’s why Molina Healthcare is proud to offer quality health care with our Bridge2Access program. And to participate in the LA Abilities Expo.
To learn more,
come see us at Booth 541 or visit MolinaHealthcare.com/Bridge2Access
the can-do man! “I can do that.” Who hasn’t muttered those wishful words while watching someone show off artistic or athletic talent. Of course the truth is, very few can, and even fewer try. Andrew Angulo isn’t one who just talks the talk. After crashing his motorcycle in 2009, his life and the life of his family immediately changed. “When an accident happens, it effects everyone,” says Andrew. “When I lost the use of my legs, my kids had to adjust to a dad who was physically different.” Before his injury, Andrew, 40, was an active father. He took Ethan, nine at the time, Jacob, seven, and Courtney, 13, to the park so much they got sick of it. After his injury, he says, they struggled to find activities to share. “The park was out of the immediate equation because of grass. Playing ball and riding skateboards or bikes, those were no longer the same.” It was a difficult transition. They often sat 14 thehubsocal.com - Premiere Issue
together watching YouTube videos that featured bloggers talking about funny things that happened to them while out shopping or driving, while re-creating the scenarios. Andrew recalls, “We’d all laugh so hard! Then one day I thought, I can do that.” And indeed he did. With no training in the cinema arts, Andrew bought a camera and began making a show he called “My Disabled Life.” The kids became his crew and he learned by trial and error. Andrew shares the closeness the project created. “My kids were my saving grace. They kept me going. Working together we were able to share some of the obstacles I faced as a wheelchair user, as well as a lot of the humor.” Andrew and his kids produced videos that show him trying out a standing frame, bouncing on a trampoline, transferring into a pool, going to work, and attempting a variety of new sports and activities. The goal was to use humor to convey a sense of normalcy. In one scene, his son attempts to get a lethargic, depressed Andrew up and moving. When Andrew finally complies we
see him transfer to his chair and then immediately run over his son. The videos were a cathartic process that not only helped others see disability in a positive light, they also helped Andrew adjust. An ability to face life with optimism has pulled Andrew through difficult times. An earlier bit of adversity came when he and his first wife got divorced. “My kids’ mother and I split in 2004. After six years we kept jogging around the same issues and it finally led to a split. We agreed on joint custody over important decisions but the kids primarily lived with me as a single dad.” Andrew was working in supply chain management when the marriage ended. It was a tough process but he adapted to life and managed to make it all work. Andrew soon met his second wife, had a whirlwind marriage in Vegas, got on track to becoming a vice president of operations at his company and started down the road to happilyever-after. It was a short ride. On an outing with friends, Andrew, an avid motorcycle enthusiast, took a turn too fast and hit a curb.
all photos courtesy of andrew angulo.
by Ellen Stohl
Angulo with his kids
Angulo with Alpert
Angulo with the Musketeers
Andrew recalls, “In the first instant of the accident, I was more upset that I dropped my bike . Then when I tried to roll over and couldn’t, it hit me that something was really wrong.” Andrew sustained two breaks of the T7 vertebrae, paralyzing him from waist down. His initial response was depression, guilt and sorrow. “It’s devastating at first. Your whole life is changed. Your body is different, how you function is different, and when you start to adjust, the world still treats you differently.” The extra stress of the accident didn’t help with the issues that had plagued his impulse marital union of three years. “We started our relationship on a shaky foundation and without really knowing who we were until we were living under the same roof. We had many challenges to overcome, such as the children, being a stepparent, family, religion and how we reacted with each other on topics. We also had a lot of great times too. But once the accident happened, it became a blame game. We both felt unsupported by each other and we
knew too much had been said and done to be able to return to find our new ‘normal.’ She left three months after I came home from rehab.” Andrew knew he had to build a new life. He went to a support group to really understand the injury and how to transition back home. “I learned to do it all on my own. I had to adjust to the new body and way of life. I didn’t have a choice. I had learn to be a single dad again. My kids needed me and wheelchair or not, I had to be there for them.” Andrew’s video series helped the family unit stay close, but the project has gone well past that. Andrew has taken the heart of “My Disabled Life” to russia, new York and beyond. Jon Alpert, a successful new York-based documentary filmmaker, saw a few of Andrew’s online videos. He liked the direction they were going so he reached out. “When I got the call I was elated. Jon told me he felt what I was doing was important. He told me if I put the time and effort into my work, I could create something powerful that would make people see disability differently.” Jon invited Andrew to be part of a u.S.russia LInK Media pioneer program. The idea was to create a unique program to help garner media attention toward a better a u.S.-russia relationship, finding common ground on the topic of disabilities. The program—they called it the Media Enabled Musketeers—involved creating short documentaries about disabilities that would provide a deeper understanding of disability and help promote friendship between russia and the united States. Andrew was nervous about the invite but knew he could do it. He spent the next nine months filming and editing. His first cut was too broad; he needed to reshoot. But, before he could get to his second cut, Andrew was forced out of action, recovering from a painful surgery. The deadline was fast approaching and Andrew felt he might need to drop out. But Jon Alpert said no. “We’ll wait for you, if you can get it done.” Andrew did. He took his finished piece to russia with the DCTV crew and the other Musketeers, then to new York for a screening at the HBO headquarters. “In both of our countries, we stood up side by side for advocacy. We shared films to portray the challenges we face. We laughed, ached and cried. We ate and drank merrily. We hugged, held hands and ultimately created genuine friendships.”
TRAVEL ONSITE: RUSSIA “I noticed the geometry of the rigid wheelchairs used by most Russians– the front angle of the chair was at nearly 45-degrees, compared to 90 on mine. This wider angle helps the chairs to navigate the many sidewalks and streets that have cobblestone, cracks, crevices and uneven surfaces. “Most restaurant and shops we visited have many steps. If there were ramps available, most were extremely pitched and started with a step. “Bathroom wise, other than the couple of hotels we stayed in, there were very few accessible bathrooms around town. Most were a very tight squeeze. I was fortunate to have many hands to assist me through the walkways, help me up and down stairs and steep ramps.” Today, Andrew wants to continue to create films that make a difference. His experience with DCTV and russia have empowered him to go further. “I want to focus on capturing video of daily life; what’s new and what’s happening. I want to develop fun and creative entertainment that forms a connection not only with the community of people with disabilities but with the ablebodied world as well. I want to help educate, inspire and entertain.”
MY gear I began with, and still use a Canon Vixia HD camcorder, with a rhode shotgun mic. for an unobtrusive indoor, on the town situations, or fast activity, I use a Kodak PlaySport (a goPro equivalent). And finally, with most scripted and planned shoots, I use a Canon 60D DSLr along with assorted gadgetry, wireless mics, film filters and lighting. I initially began editing with iMovie. I later jumped to final Cut Pro.
Visit disabledlifemedia.com for more information. Premiere Issue - thehubsocal.com 15
TECH WORLD POWERING UP INDEPENDENCE AND BEYOND BY SAM MADDOX
LINKS Loc-Line modularhose.com ifaraday stylus ifaraday.com Touch free smartphone sesame-enable.com Jouse jouse.com/jouse3/home Dragon speech recognition nuance.com On-screen keyboard imgpresents.com Chromecast google.com/chrome/devices/ chromecast
16 thehubsocal.com - Premiere Issue
I USE MY SMARTPHONE EVERY DAY, all day, and it has given me more independence than I had ever dreamed of when I was injured 18 years ago. From texting and email, to music and search to games and movies, you do everything on a smartphone now. I’m a C3 ventilator-dependent quadriplegic with no feeling or function below my neck. When I had my injury in 1997, voice recognition software recognized every other word, the Internet squealed at you when you connected through a landline and smartphones only existed in science fiction movies. Today, voice recognition can translate from one language to another in real time, most of us would trade one of our (functioning) arms for the broad utility of the Internet and a smartphone is as powerful as a supercomputer from two decades ago. Technological progress has been astounding, and has given all of us with mobility disabilities far greater independence. I have a custom phone mount on my wheelchair made with Loc-Line which can hold either my phone or tablet. I use aluminum mouthsticks with a vinyl mouthpiece (to protect my teeth) made by ifaraday. Typing with a mouthstick can be tedious, but voice recognition on phones works very well and is constantly improving. Typing emails, commanding your phone to call a friend, and searching with Google can be done with nothing other than one’s voice. For others with more limited movement, I just discovered a
crowdfunding effort to build a phone controlled by eye movements. I also use a Windows PC every day controlling the mouse with a Jouse2 and typing with Dragon NaturallySpeaking and an on-screen keyboard made by IMG. The Jouse works as fast as a mouse, Dragon works well for dictating most words, but the on-screen keyboard is necessary to fix typos and to type the words that Dragon doesn’t recognize, such as foreign-language words and companies with snazzy, phonetic names. The on-screen keyboard also allows macros to be programmed so that by clicking one button, I can, for example, type my email address or password. Some people with high level mobility disabilities use eye tracking hardware to control a mouse; others use a head controlled mouse. Altogether, these assistive technologies allow me to live and work independently. Along with advances in hardware, software and media companies have adapted quickly and provided many easy ways to satisfy consumer’s tastes. Consumers want to watch video on their own time and on their own device, whether that’s a TV, desktop, laptop, smartphone or tablet. The most well-known is probably Netflix, which can be watched on a smartphone, tablet or computer. I’ve watched TV on my phone/tablet through the excellent Time Warner Cable TV app. Most networks are available through the app, but you are limited to watching through your Time Warner
PHOTO BY SAM MADDOX.
Internet connection at home; only a handful of networks are available outside your home Internet connection. I’ve also streamed Time Warner TV through a web browser on my desktop computer and it worked almost flawlessly. The DirecTV app is similar, but more limited in the channels available for streaming. Both apps also work as a remote to control your TV and DVR. Comcast, Dish Network and other TV providers also have their own apps.
Environmental control is another area where smartphones have made people more independent.
Premiere Issue - thehubsocal.com 17
J E A N S for people with disABILITIES MADE IN LA W W W. A B L D E N I M . C O M
TOBIAS FORREST M usi ci an, C it yz en i n S w eat Denim
PHOTOGRAPHY © CHRISTOPHER VOELKER
Chromecast (from Google) is a $35 thumb sized media streaming device that plugs into a TV. By using your phone you can “cast” the media on your phone (iPhone or Android) to your TV. I use Chromecast to watch Netflix, YouTube, HBO and others. With a decent broadband connection, it works flawlessly. Movies and TV can be rented and purchased through Google Play. Apple TV is a similar competitor that only works with Apple products and you can only purchase movies and TV shows through iTunes. Roku, Amazon, PlayStation and Xbox all have TV streaming capabilities as well. TV is finally beginning to “unbundle,” which means consumers will be able to choose which channels to purchase instead of being forced to purchase bundles of channels. Dish Network just announced Sling TV, an online only TV service for only $20 per month. Expect more change that allows consumers more choice. Environmental control is another area where smartphones have made people more independent. I remember trying out environmental control units in the late 90s that cost several hundred dollars and did not work very well. The technology was proprietary and integrating an environmental control system into an existing house cost thousands of dollars. Today, with open standards like Bluetooth, Wi-Fi and readily available products, including a number of inexpensive phone apps, anyone can control their environment inexpensively and efficiently. SmartThings, a company specializing in home automation, allows control doors and locks, lights and switches, thermostats and other things around your house. EvoAssist is an app that turns an iPhone into a universal home environmental controller that can control electronics, automatic doors, lights, ceiling fans and other things connected to the app. Control4, Nest, and numerous other companies make countless other devices to control your environment. Many of these products are fairly new and may have some kinks to work out, as all new technology does. But over time, these connected devices will work smoothly and afford greater independence to people with mobility disabilities. 2015 is an amazing time to be alive. Technological advances have brought enormous benefits to people living with mobility disabilities. Progress continues to accelerate. Many technology companies are in an arms race to build artificial intelligence and software that will automate our lives even further. Extrapolating from the past few decades of progress, I can’t wait to see what’s next!
swimming upstream BY BRIANA WALKER
OTHER VOICES The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. —Martin Luther King, Jr. Life is a series of experiences, each one of which makes us bigger, even though sometimes it is hard to realize this. For the world was built to develop character, and we must learn that the setbacks and grieves which we endure help us in our marching onward. —Henry Ford A smooth sea never made a skillful mariner. —English proverb The difference between stumbling blocks and stepping stones is how you use them. —Unknown Source
SPONSORED BY RALPH’S RIDERS FOUNDATION www.ralphsriders.org 18 thehubsocal.com - Premiere Issue
ILLUSTRATION © LASSE KRISTENSEN/FOTOLIA.COM.
iversity doesn’t discriminate. As humans, we are not immune to the effects that accompany adverse times, and no one should have to withstand it alone when others have taken the journey before. The wheel doesn’t get reinvented with every new spinal cord injury that occurs, but it most certainly reinvents the driver pushing that wheel. Greg Thompson knows this first hand. His personal and professional experience allows him to mentor other recently injured on their newfound road in life. In 1977, Greg Thompson, a young, newly married avid athlete, was injured in a waterskiing accident leaving him a quadriplegic. His first impression was that of eagerness to figure out his next move. Enter Jeff Minnebraker. Minnebraker was a recreational therapist and paraplegic known for his role in movies such as Get it Together, but more importantly to Thompson, he was a competitor in a variety of sports, including wheelchair racing, basketball and football. “This guy was maxing it out, and that is exactly Greg Thompson what I wanted to do…he made me want to grow up to be a paraplegic,” Thompson jokes. “Modeling behavior is what motivates people because there is more value in leading by example,” Thompson added. It wasn’t long before Thompson was on his way to becoming a role model, breaking through barriers and limits that therapists and doctors placed upon him. His approach was to address the physical challenges first, hoping that confidence and independence would soon follow. He competed in marathons, tennis, quad rugby and basketball. His desire for education came next. He received his bachelor of science in recreation therapy, and then went on to achieve his master of social work in therapeutic recreation. He broke through barriers again and became a father to three children. In 2003, he founded KNOW BARRIERS, a program at Rancho Los Amigos Rehabilitation Center, whose mission is to empower people with disabilities to create a vision of personal success and achieve life goals through peer mentoring. Thompson believes, “The key to being an effective peer mentor is listening.” He believes this augments self-efficacy maximizing one’s potential. Ralph Fornos was one of many newly injured that Thompson mentored. In 1979, Fornos, an athlete and pre-law major who became a quadriplegic from a surfing accident, was at his lowest. His wife, Mayra, remembers seeing her once vibrant and determined husband reach a point of hopelessness. Thompson entered the hospital room and Mayra stepped out to allow for some man-to-man conversation. “When I came back in there was a new spirit present.” Mayra recalls. “Ralph was smiling like tenacity had been reborn within him.” Fornos wanted to change the world. He went on to become a prominent lawyer, advocating for the inception of ADA laws in America. In the 37 years since Thompson’s injury he’s mentored thousands, and his mentoring continues as the Executive Director of Los Angeles Counties Public Authority for IHSS. He’s often found in Sacramento lobbying for seniors and people with disabilities, because NO barrier is insurmountable with Greg Thompson at the wheel.
revolutionary coudé tip catheter has arrived!
WATER SACHET •
For instant activation
INSERTION GRIP • •
Easier handling Sterile, no-touch convenience
ADVANCED MATERIAL Not made with PVC, phthalates and natural rubber latex • More environmentally friendly •
with LoFric Origo
HYDROPHILIC SURFACE • •
Nearly friction-free Smooth insertion and removal
DISCREET PACKAGING • •
Foldable and non-medical looking Doubles as a disposal pouch
SMOOTH EYELETS •
For maximum comfort
CURVED COUDÉ TIP •
Easier insertion, if prior difficulty passing a straight tip
Contact us for
FREE SAMPLES LOFRIC to 52004* or call 1-855-456-3742 Text
FOLLOW ONLINE AT “LOFRIC US”
*Text HELP for help, STOP to cancel. 4msgs/mo. Msg&data rates may apply. For full terms and conditions, visit www.wellspect.us/Privacy-Policy.
S PINAL C ORD I NJURY
We pledge to seek justice for those who have been wrongfully harmed and have needlessly suffered.
’s co-founders are highly acclaimed attorneys who have received many accolades from their legal peers and whose lives demonstrate how much they care about the people they represent. Mayra has been a tireless attorney advocate for the disabled community for over 30 years. She is the founder and chairperson of Ralph’s Riders’ Foundation, named for her late husband Ralph, a C5/6 quadriplegic, an attorney and pioneer of peer support in the wheelchair community. She has received extensive civic and governmental recognition for her advocacy. Doctor Steve is a physician as well as an attorney and understands the extraordinary needs of his disabled clients. His dedication has earned him numerous awards from disabled community organizations. Each has been the principal of their own firm for over 20 years. They are elected and appointed leaders of the top California organizations of attorneys protecting “the powerless individual.” Through SCI, you will have access to all the best attorneys, legal teams, experts and other legal resources you need to receive justice in your case.*
Steven Heimberg, M.D.
With Mayra and Steve in charge, SCI Lawyers help you put your life on track: • Case Evaluation • Compilation of legal and medical evidence • Assembling the best legal and medical experts in California • Connecting to resources and people in the disabled community
800 W. Sixth Street, Suite 1500 Los Angeles, California 90017 www.scilawyers.com • firstname.lastname@example.org Hablamos Español
Mayra Fornos is a pioneer in ADA protection, with over 20 years law partnership with her quadriplegic husband, and a highly decorated injury lawyer • Best Lawyers – Los Angeles Lawyer of the Year • Lawyer of the Year (winner and nominated 9 times) • The National Trial Lawyers – Top 100 Trial Lawyer (7 consecutive years) • Best Lawyers in America – Best in the practice of BOTH personal injury law and medical malpractice (5 consecutive years) • Los Angeles Times—Los Angeles Women Leaders in the Law (4 consecutive years) Steven Heimberg is both a Medical Doctor and a nationally recognized injury attorney
RECORD BREAKING OUTCOMES
Over half a BILLION DOLLARS Obtained for Our Clients Many multimillion dollar judgments and settlements Verdicts • Largest Medical Verdict in California history • Largest Verdict in Los Angeles County history • Largest Medical Verdict in Ventura County history • Largest injury Verdict in Santa Barbara County history Settlements • Largest Medical Settlements in California, Los Angeles County, Riverside County and Kern County history • Responsible for numerous changes in the law in favor of the severely injured
CONNECTIONS TO THE SPINAL CORD/ DISABILITIES COMMUNITY
Mayra and Steve are committed to and truly engaged in the disabled community, founding, residing on boards and supporting numerous organizations, including: Ralphs Riders – Wyngs – Shanes Inspiration – Empowering Youth in Cambodia – The Consumer Attorneys Association of Los Angeles. They are proud to have received Special Recognition for work with the State of California, Culver City, Westside Womens Network and the Dayle McIntosh Center.
We will zealously fight to protect you and your needs.
No Fee Until Recovery
HELPING YOU RECLAIM YOUR LIFE *This does not constitute a guarantee, warranty or prediction regarding the outcome of your legal matter.
See our ad on back cover.
Beyond the Velvet Rope: NightWheeling in LA!
Katie, Chelsie, Vanessa and Toby on the night beat
DOWNTOWN is where it’s at! where is that? and how do I get there? by The Hub SoCal Club Team Photography by Xander Mozejewski
Nightclubbing in SoCal. Being young and hot and severely able-bodied helps, but get this: so does arriving in a wheelchair. You will need to come to terms with hit and miss accessibility but the clubs will embrace you and do their best to amuse you. Be prepared for $14 cocktails. Dress up. Get down. You will be told you are an inspiration. You will get spilled on and tripped over. But as The Hub SoCal’s clubbing crew will testify, you will have a crazy cool experience. Vanessa Osman These days I’m not so big on the SoCal nightlife
scene but I never have been one to say no. My days of dancing, drinking and dashing about the urban nightscape started 20 years ago, and half that time I partied in a power chair. The way I am treated and the reactions I experience have been similar whether I’m clubbing in Dubai or LA, but I have never been out with a group of six people in wheelchairs, which made this assignment very intriguing and exciting. We agreed to meet at The Rooftop at The Standard, a popular downtown hotel. We were fairly early, which meant no cover, no bottle service or VIP drama at the dreaded rope. But just as Premiere Issue - thehubsocal.com 21
Beyond the Velvet Rope: NightWheeling in LA! Three More LA clubs The Edison Located down a sketchy downtown Los Angeles alley, very popular, mostly accessible. Industrial chic flapper-girl vibe. Live burlesque shows some nights. 101 West 2nd Street, Los Angeles Dirty Laundry Leading the speakeasy trend in Hollywood. Password hint: any sexual expletive will do. And please don’t call ‘em bartenders. The mixology staff have reinvented some classics: frozen bacon Manhattan anyone? 1725 North Hudson Avenue, Los Angeles 1 OAK New York by way of Vegas style fun, site of Suge Knight shooting last year. Ultra luxe. Bring money. Maybe you will run over some famous toes. 9039 West Sunset Boulevard, West Hollywood
I experienced before injury, I was not asked for ID, just simply ushered to the elevator. This has been consistent in my experience both before and after injury. Ah, the ease of being a female... Once upstairs, it was surprising how crowded the place was on a Thursday night. (Then again, LA’s nightlife scene begins on Thursday and doesn’t stop until Sunday night.) The bouncers were very accommodating, making sure that we had a path cleared to our table. A few of our group nonchalantly slid from their chairs to the couches and laid out comfortably sipping cocktails. One of the best things about the bar is that the sectioned lounge spaces have low furniture, easing the transfer. Another plus was an attentive wait staff—we didn’t have to worry about going up to the bar and ordering drinks. Before long we left the fairly low-key vibe of The Standard, piled into our cars and headed across town to Hollywood to a trendy spot called Warwick. There was quite a bustling queue behind the velvet ropes but we had an advantage—one of our friends in the group had arranged for a table. We were quickly ushered in by bouncers who performed serious crowd control. Warwick is gorgeously decorated, large but crowded. The interior is a unique mix of wooden beams, high ceilings, opulent chandeliers and random Asian art. The bar is a classy design throwback to the early 20th
“ ...the drunker they are, the more inspiring you become. — Toby Forrest
” 22 thehubsocal.com - Premiere Issue 2 thehubsocal.com - October 2014
century. The DJ spun popular hip-hop/club pop music and threw in some old school jams from Michael Jackson and James Brown. The night continued without a hitch. Energized waitresses in barely-there dresses frequently stopped by to replenish drinks. Hyped up fel-
low clubbers stared at our posse. Eventually, Chelsie and I stormed the dance floor, fending off drunk dancers trying to grab our hands to dance. Of course, there were people telling us how “amazing” we were. When the dance space got overcrowded some toes were sacrificed, people tripped over rear casters and turned around ready to shout— suddenly stunned that it was a wheelchair that caused them to eat shit. My theory if you’re going to dance and you’re in a wheelchair: Dance big and dance wide...unapologetically! Within an hour the club was at capacity; navigating both the dance floor and a way to the restrooms became precarious. It was a relief finding that the bathrooms were spacious and clean, offering a fully accessible stall and even an attendant. Exiting the club required much more attention than getting in as serious throngs of inebriated and unsteady girls and guys failed to notice our need to get around them. Don’t sit this scene out. Just roll with whatever the night brings. If you resign yourself to the fact that you’re going to have a good time regardless, you will. And wheelchair or not, you (and maybe a little help from your friends) will make it work. Chelsie Hill I never went out in Hollywood as an ablebodied person. I’ve only experienced nightlife sitting in my wheelchair. Accessibility is never certain, so when my friends and I decide to go out, we usually call the club ahead of time so they can prep for us. One of my favorite clubs is Warwick, on Sunset Boulevard in Hollywood. It’s is a beautiful place and a ton of fun. Every time I’ve been there they have accommodated my friends and me, no questions asked. Going out in a wheelchair can definitely be difficult. Drunk people are going to spill drinks on you or run into your chair. It’s always a good idea to have some nondisabled friends along with you, just for some extra assistance. My advice for people in chairs planning to go out in Hollywood would be to bring friends, call ahead, and watch out that you don’t run over any toes.
Katie Sharify Three-plus years ago, I went out with friends on Halloween. It was the last time I would walk in and out of a nightclub on two feet. Two days later, November 2, 2011, I was in a hospital bed with my back literally snapped in half. The story of my “final night out” isn’t significant just because it was the last time I went clubbing as an able-bodied 23 year-old. What stands out most about that night is a weighty foreshadow—and the reason I have avoided the nightlife scene at all costs ever since. This backstory also happens to be the reason I agreed to finally face my demons, get back out there, and write about my experience—this time rolling in and out of a nightclub on four wheels. I moved to Los Angeles from the Bay Area six years ago; my only intention was to attend USC and graduate with perfect grades. Maybe I had watched one too many episodes of The Hills or maybe I was just making up for lost time, but once I got my first taste of a real night out in Hollywood, I was hooked. I guess you could say the rest is history. I spent the next two and a half years making all the right friends in all the right places and went to every hot nightclub opening. Clubbing became almost a full-time job. Starving all day to fit into our outfits, spending hours on hair and makeup, figuring out which clubs to hit and whose expensive alcohol to drink... really tough stuff. And I won’t deny it. I loved it all, every second of it, mincing past the long lines and the velvet rope straight into the club where my girlfriends and I always found plenty of good looking men offering us a spot at their VIP table. It was a charmed life. I don’t remember much leading up to my accident but the memory of my final night out remains lucid. It was a typical night. I took my sweet time getting ready, arrived late to meet my friends at the club, headed straight to the bar. After what felt like centuries of being ignored by the evil bartender, I finally got what I came for: two double shots of tequila. I overpaid and overtipped, but, hey, the night could only get better, right? I turned around to make my way back to my friends, carefully balancing my overpriced shots and walking on six inch heels through a sea of drunkenness. Then boom. There it was. Something hard. What kind of asshole would leave a piece of metal in the middle of the club? I looked down. It didn’t register. It was a young man in a wheelchair. I remember feeling shocked and angry. Who did he think he
was? This wasn’t a wheelchair club! Why was he sitting there in everybody’s way? He had almost made me trip and fall. Not only that but I almost spilled my precious drinks! Didn’t he have other wheelchair friends to hang out with at a wheelchair club? Who even let this guy in? I mean, just look at him! I didn’t say anything. Thankfully. I just gave the poor man my nastiest death glares. You could probably hear hissing and see flames coming out of my ears. I was very unkind. This is a story I have only shared with close friends. Just writing it down now makes me feel incredibly ashamed. When I laid in the middle of Interstate 5 with my back broken two days later, all I could think of was the man in the wheelchair. I knew instantaneously that I was paralyzed. Memories of my brief exchange came rushing back. I don’t actually remember much from the crash itself. All I remember is the horror and thinking, “what goes around comes around, bitch.” I spent the last three years avoiding LA nightlife. At first I simply wasn’t “ready.” Then it was my bladder. Not knowing how to get in and out of my friends’ cars. I was too old. I was tired. I didn’t have time. I was on medication. I quit drinking. Excuse after excuse. I even missed my younger sister’s 21st birthday because I just couldn’t bear to put myself out there again. Sure, I went to a bar here and there. But an actual nightclub? A hotspot? In Hollywood of all places? No way. What if there were steps (which there usually are) and I had to be carried? It would cause a scene. Everyone would stare. It would be humiliating. What if I simply was rejected at the door? I had way too much pride to test out that theory. What if I ran into my former party friends? I hadn’t always been the nicest person. Would they think I deserved what I got for being such a bitch? And then there was that Halloween guy in the chair. What if people felt the same way about me? What if—just like him—I was unwelcome? When asked if I would contribute to a “club piece,” where I would go out to an LA hotspot with a group of other people in wheelchairs, my immediate response was, “Yes!” I thought it was brilliant. It would not only give me a chance to face my demons but also gain insight on an activity which had for so long terrified me. While I had my reservations about October 2014 - thehubsocal.com 2
Not just LA: San Diego Altitude Sky Lounge 22 stories above Petco Park in the downtown Gaslamp District. Lots of VIP hooks if you bite. In the Marriott, 660 K Street, San Diego Fluxx Also Gaslamp, big sound and VIP theatrics. Lots of dance zones. Recent celebrity sightings: Snoop Dogg and Ashton Kutcher. 500 4th Avenue, San Diego Onyx More Gaslamp, might as well make it a crawl. Popular place, meaning wear waterproof shoes, you will get spilled on. 852 5th Avenue, San Diego
Not just LA: Santa Barbara Savoy State Street bar crawl offers a club or two. Meaning wait behind the rope or a pay to play with VIP service. Made for dancing and drinking. Burlesque and aerial shows. Dress code beachy-loose. 409 State Street, Santa Barbara
Premiere Issue - thehubsocal.com 23
Beyond the Velvet Rope: NightWheeling in LA! rolling around with other wheelchair users and surely causing a scene, at least I knew that I would be sharing the experience with people who truly understood me. Our party met at The Standard Hotel in Downtown LA. Its rooftop bar/lounge offers a lovely view of the city skyline. Vanessa and I took a large elevator up to the roof. Friendly staff guided us in the right direction. Aside from a glance here and there, other patrons didn’t seem too shocked to see six wheelchairs crammed in one spot. That’s one of the nice things about going out downtown; the crowd is so incredibly diverse, our presence was hardly noticed. I would definitely go back to this establishment. Next we headed to Warwick in Hollywood. We had to hatch a plan so we could actually enter the club without having to wait in line and pay a cover. This can be done in two ways: Find a promoter or splash down an absurd amount of money on bottle service. We went with the first option. Our promoter was able to guide us in, no wait, no cover, and we had our own table. I was pleasantly surprised by nice doormen, helpful security staff and an attentive waitress. As someone who has both worked in the club industry and once frequented every nightclub in the city, I know that receiving this kind of treatment is rare unless you are a regular big spender. Warwick was wonderful in making us feel both welcome and comfortable. I couldn’t muster enough confidence to join Chelsie and Vanessa on the dance floor, but I admired them for letting loose and really enjoying themselves. People get loaded and tell us how courageous and inspiring we are—which happens time and again—but I’ll take the silly comments as long as everyone is pleasant, and I don’t run into anyone as mean as that version of myself that Halloween night. Toby Forrest A steady pulse of heavily muffled bass with a long line of scantily clad models and overly polished douchebags—that’s what most of us expect to find outside of a Hollywood club. The entrance is possibly the most important part, and it is also the place where we find out just how special we are. 24 thehubsocal.com - Premiere Issue
Traffic and parking may have beaten us down, but the promise of what lies beyond the door gives us hope that soon we will be drunk, dancing and worry free. However, there is still the dreaded line, the cold wait and the possibility that we are not on the list. I have had this experience many times but I have one advantage, my wheelchair... and the longer the line, the more disabled I become. The first way to beat a line is to surround yourself with beautiful women but if you don’t have that, a wheelchair helps. Most often this happens because my chair creates confusion amongst the bouncers and management. Rather than make a scene or get too distracted by me, they get me Great Pull Quotes out of the way as quickly as possibly. In the past, this has to some awesome My theory if led you’re going to dance andbenefits you’re in a wheelchair: dancehave big and dance and experiences, but there been a few wide, unapologetically! V. to Osman instances where I was –led the back door through a dark, wet alley then past a dirty ... the drunker they are, the more inspiring kitchen and stuck in the far corner of the you become. T. Forrest club. I think this is often called the presidential entrance. I have lived in Los Angeles for the past decade and have experienced quite a few clubs during that time. Most clubs here are fairly accessible and some promoters even like the diversity I bring. However, there are the occasional places that totally suck, whether it’s through their fault or mine. Planning to party by researching pictures online is helpful, but contacting the venue and talking to management about access might result in some unexpected VIP treatment. Time is your best weapon too; showing up early gives the doorman a chance to put focus on you. Get there too late and you will be ignored as you compete with the long legs and big tips. Also, getting in the club early gives you the best real estate. It helps to ask the staff or management where the best spot for you to be “out of their way” is. This will make them empathetic to you and once again may result in some VIP seating. Being closer to bathrooms and exits is always a good idea, plus it gets you eye contact with everyone who is coming and going. Once you’re settled inside, the best thing to remember is that everywhere is your dance floor. Yes, people notice your chair, and, yes, many of them are inspired that
you are out loving life. In fact, the drunker they are, the more inspiring you become. Dancing is like a subliminal message that these people should buy you a drink for being so awesome. If you can get out on the dance floor, make sure you are prepared for the drunk folks who want to drive you around. If you encounter this type, just lock your wheels and after a couple attempts to move you they will give up. You may also encounter the occasional lap dancer who wants to sit or grind on you. Unfortunately, there’s not much defense against this—the best bet is to retreat, if possible, or just hang on and enjoy the ride. Xander Mozejewski I’ve been all over LA’s night scene, and, no doubt, accessibility is often an issue. Fortunately, I’m always with friends who can carry me up stairs. A place in Hollywood I like a lot is Good Times at Davey Wayne’s. It’s fun, but crowded, small and up some stairs. To be honest, a crowded bar is a horrible place for a wheelchair, but this place has great drinks and is always filled with dope people. Every night, performers swing dance on roller skates. I’d say Nightswim at the Roosevelt is my favorite; open every Tuesday night in the summer. I go every week because it has the best energy, and I can wear a tank top and get away with it. If you didn’t know, the LA club scene is pretty much dress coded, and I hate wearing shirts. For this article, a group of six of us in wheelchairs met at The Standard, downtown on the rooftop of a hotel. Fun, kinda mellow, but I loved the location and view. I would definitely go back—it’s the perfect venue for a great night. My wheelchair has not been a detriment to participating in night life. I roll around these places, packed full of people, as fast as I can, smiling big, looking pretty. Everybody seems to love me. I never wait in lines, people offer to buy me drinks, they stop me to say, “You’re such an inspiration! Rock on!” I love the attention. I don’t even care about drinking, I just like talking to people, showing them my Instagram, and telling new stories of how I ended up in a wheelchair. At the end of night, LA is LA and anywhere you go will be a blast if you’re with the right crew, and you meet the right people.
non-profit SPOTLIGHT The Self-Employment Advantage By Vanessa Osman
the seeds of selfsufficiency
“How many of us know that the unemployment rate among adults Americans with disabilities who want to work and can work is over 60%?! Yes, you heard me right: almost two out of three people with disabilities cannot find a job. That is a blot on our national character.” —Sen. Tom Harkin in his final speech on the Senate floor, December 2014
Employment is the weakest link in the movement to empower people with disabilities. Harkin, as good a friend to the disability community as any elected official ever has been, hits the nail on the head: Progress in civil rights has come a long way. But people with disabilities are still not getting jobs; the unemployment rate has not changed in the 25 years since passage of the Americans with Disabilities Act. Andy Leaf, along with his Laguna Beachbased non-profit Seed Business Network, has dedicated himself to doing something about this. Leaf faced the lack of employment options due to his own circumstances. At the age of 18, he broke his neck diving into a
sandbar in 1964. He says that as he adjusted to his new reality, he figured he had a choice. “I could either dwell on the things that were no longer possible. Or I could use my mind, be creative and learn new ways to do things.” A high-level quad is probably the hardest placement to make in the job world. Transit is difficult, as are recurring health issues. Office work may not be a good fit. Fortunately, Leaf says, he’s always had the spirit of an entrepreneur. He discovered the many benefits of self-employment. Since he got a home-based career going for himself, Leaf has been a champion of self-employment for people with disabilities. He started the Seed Business Network, a 501c(3) charity, in 2003. “Our mission,” says Leaf, “is to assist people with disabilities in developing their own business, and also to help them with the social and life skills they need to succeed.” Work is about making money but it’s more than that, says Leaf. “Employment helps people with disabilities to provide for themselves, to be more self-sufficient, but also to increase their self-image and
help them become contributing partners in their communities.” Seed has helped many individuals identify work options that suit their interests and skills; Leaf says people often need guidance to develop strategies to succeed, including a fully detailed business plan. Many take advantage of the tremendous power of the networked world of computers as programmers, bookkeepers, writers. Others became inventors or artists. Leaf recognized that state vocational rehabilitation personnel were part of the problem: they were not aware of the many self-employment options for their clients with disabilities. So he received a grant to write a special software package for VR offices. He’s hoping the software, VRBiztools, will encourage VR counselors to recommend self employment, and to use the tool to assure long term success by building an effective business plan. He hopes the tool (vrbiztools.com) will be ready to market to VR offices in several states in 2015.
Visit disabilitybiz.org for more about the Seed Business Network. Premiere Issue - thehubsocal.com 25
The Evolution of POST-REHAB: ACCESSIBLE EXERCISE BY SAM MADDOX EXERCISE IS THE GATEWAY TO HEALTH AND WELL-BEING. This is true for everybody, but for people with mobility-limiting disabilities, it is even more essential to work the heart, stretch the joints and move the body. Recovery is possible for some; vitality and quality of life are assured for all. Here are a number of fitness centers that cater to the wheelchair community.
Challenge Center, La Mesa
26 thehubsocal.com - Premiere Issue
extra effort to promote independence and wellness in this population isn’t a cost; its an investment with both a financial and social ROI,” says Piquilloud. Another topic that always bugged Bodry was the rapid success of the upstart gym a few miles north in Carlsbad, Project Walk. Sure, there are people getting some results, he’d say, but at what risk? Challenge Center was built on the idea that professional therapists are required to assess and prescribe the right exercise. Project Walk employed only exercise trainers, no licensed therapists. “For a layman to define an exercise program for a person with a neurological disability is a recipe for disaster. They say get out there and exercise; that’s fine for the general population, it’s ‘just do it.’ Fine. But for people with disabilities, it’s just do what? In what way? For how long? you have to be concerned, will I improve or will I aggravate my condition?” Challenge Center (challengecenter.org) charges $20/month for unlimited access. Initial PT evaluation is $125. PT-led sessions are $90/hr. Trainers are $16-46/hr. Special gear: FES ergometry bikes; NuStep.
Hal Hargrave being assisted by Jason Smith at Project Walk in Claremont
Project Walk, Carlsbad Over the years plenty has been said, bad and good, about Project Walk. Somewhere between miraculous recovery and deceitful promise lies this: The marketplace has validated PW’s sports trainer concept of rehab-as-a-lifestyle therapy. The mother business, based in Carlsbad, figured out early on how to monetize hope: PW clients typically spent $3,000 or more a month, sometimes for years; the business model now includes franchises, the first in SoCal in Claremont. Meanwhile, former PW trainers keep popping up similar SCI gyms all over, including Strides in San Juan Capistrano, and SCI-FIT in Pleasanton and Sacramento. Project Walk got started because of Mike Thomas. He was paralyzed, C7, in a car accident in Cuba in 1998, shipped to Miami for rehab, then came home to California hoping for some recovery at the vA hospital in San Diego. He was discharged and pronounced
PHOTO OF BILL BODRy By SAM MADDOx. PROJECT WALK PHOTO COuRTESy OF HAL HARGRAvE.
The post-rehab fitness and recovery movement was invented by Bill Bodry, who opened the Challenge Center in La Mesa, near San Diego, in 1988. This was the first community-based, disability-friendly gym— the first non-institutional facility promoting accessible exercise. Bodry was spinal cord injured, T5, in 1973. After a few years, he started to feel the aches of aging; his research kept coming up across this maxim: “If there is a cure-all beneficial to most every condition that a person can suffer, exercise is it.” He wasn’t sure what he ought to do to get fit, and, of course, he could not find a facility offering the wheelchair-easy package he needed. So Bodry pulled a non-profit board together, got local government to subsidize some rent, hired a physical therapist and opened Challenge Center. Bodry, now retired, was a relentless scrounger for funding to keep Challenge Center afloat; he stayed motivated by witnessing “little miracles” on a regular basis. Bodry says he and his staff never made bold statements to clients about recovery. “We never guaranteed any particular result. But we did guarantee that whatever is possible will be possible here.” Bodry has long been openly annoyed by the lack of insurance reimbursement for obvious health and wellness benefits at Challenge Center. Tiffany Piquilloud, a physical therapist and executive director of Challenge Center, says staff is preparing a study to show that the program works and saves the system a ton of money. “The
“rehabbed.” Not acceptable, said Thomas. “There’s got to be something better.” Thomas met Ted Dardzinski, a former triathlete who became an athletic trainer, in La Jolla. Dardzinski had not ever worked with a paralyzed person, but he got Thomas out of his wheelchair, on the floor, and they tried whatever they could think of to reset the connections between brain and body. Dardzinski worked with Thomas not to compensate for lost function, but, by using spasms as activity, and by using repetitive patterning of movements and weight-borne exercises, they hoped this would reawaken neural pathways, and thus, recovery. Recalibrate expectations, work on the body parts that don’t work. That’s the gist, anyway, behind what is now the Dardzinski Method. It worked for Thomas. He regained the ability to walk, pretty much the holy grail in this business. Dardzinski got a few more clients, put up a shingle—alongside his wife Tammy and fellow trainer Eric Harness—and called it Project Walk. Thomas, in his 70s now, is still a regular at PW. He doesn’t have to say a word; newly injured people with paralysis see him and get the message: “Look what I got back, and maybe you can too.” I visited PW a few weeks ago, chatting with Harness about the Method (about 1,800 total clients from dozens of countries, still getting some recovery), the business (Carlsbad location downsizing from 24,000 square feet of space to 10,000, due to reduced client volume due to franchising), and, since he was listed as Research Director, the data and current projects (he is the first author on research often-cited by PW that claims 71 percent of clients improve function below the level of injury; he’s collaborating with Cal State San Marcos, hoping to show that exercise improves bone density). Harness, known as “Snowman,” has been a regular contributor to the online SCI community CareCure. A tough crowd; over the years, they skewered Project Walk for being avaricious, or for pandering to false hope. Snowman would have fallen on his sword for the Method. Well, three days after my visit, I heard from Harness; he’d been downsized too. Project Walk (projectwalk.com) charges $110/hr. for one-on-one training. Homebased program available. Gear: body-weight supported treadmill; weight stations; vibration platforms, FES bikes.
Project Walk, Claremont Hal Hargrave, 17 and just out of high school, was spinal cord injured, C5/6, in 2007. Just days after leaving Casa Colina Rehab, he became a regular at the Carlsbad PW, twice a week for six years. Motor function recovery was modest but Hargrave got a lot of mental, emotional and social benefits from being a Project Walker. He’s healthy, much more confident and self sufficient, and that’s a direct payoff, he says. “Exercise, if you stick to it, is medicine,” says Hargrave. Shortly after his injury, Hargrave and his family started the Be Perfect Foundation, a charity to help SCI folks with things they need, including costs of therapy, equipment and transportation. Be Perfect has raised $2.5 million along the way. Project Walk Claremont, a collaboration with Be Perfect, began in a small space — actually, a racquetball court—donated by the Claremont Club, a fitness/tennis club in town. Hargrave brought in a trainer to work with a group of his spinal cord injured friends. The club later offered him a much larger space, rent-free, to expand. The franchise idea had just been hatched by Project Walk and everything lined up. Hargrave and his parents pooled $300,000 to fund PW Claremont. It’s being run by the Claremont Club and is now serving more than 50 clients; his family, says Hargrave, “doesn’t make a dime” from PW. Two cool features: Claremont is a lot easier to get to for LA clients, plus it’s cheaper ($85 an hour versus $110 in Carlsbad). Second, families and caregivers of PW clients get free use of the 19-acre club’s amenities, including yoga classes, pool and spa, and tennis. PW Claremont (claremontclub.com— click on Project Walk) charges $85/hr. for one-on-one training.
CORE, Northridge Aaron Baker was injured in 1999 at age 20, C4/5/6, crashing in a motorcycle race. He says his first doctors gave him little chance of feeding himself again. After six months inpatient rehab at Northridge Hospital, and six more as an outpatient, “My insurance company deemed me pretty much rehabilitated. I was still in a power wheelchair but my body was just starting to respond; sensation was blotchy but there were flickers of movement. Mentally, I was a wreck. I’m an athlete. I like to train. I was motivated. And now, all of a sudden, I’m not able to work out in a rehab facility or around people who
could actually help me?” Baker tried a few local gyms; the equipment was inflexible for his needs. He even tried Project Walk for a short time. Then in 2000, he got connected to kinesiologist Taylor K. Isaacs. “I said to him, ‘With my motivation and your education, we’re going to make in happen.’ I saw his enthusiasm, and it matched mine.” They worked at it and Baker’s body responded. He regained a great deal of sensory function, and eventually could walk using just a cane for support. Baker still calls himself a recovering quadriplegic; at this point he trains mostly for maintenance. “If I stop working out even for a short while, my body feels like lead.” Baker, his mother Laquita Conway, and Isaacs opened The Center for Restorative Exercise (CORE) in 2011, in a Northridge shopping center. It’s an attractive space, busy, upbeat, with a warm, community vibe and regular social events and lectures. Baker says CORE is careful about what they promise. Of course folks may set their own expectations after seeing the founder get up and walk away from his wheelchair, but that’s not the point. “We do not promise recovery. We do say that if you don’t pursue a healthy lifestyle of activity and movement, your body will succumb to the secondary complications of paralysis, and you will not improve.” Isaacs’ mantra is that fitness is a lifestyle choice, something that has to be maintained across the lifespan. Optimal training and nutrition will result in optimal performance and can help to stave off degeneration and disease. The core message at CORE: Results will follow if you become a consistent, dedicated, long term exerciser. For clients with spinal cord injuries, Isaacs encourages an integrated approach, working with diet, conditioning, flexibility, cardio fitness, balance and posture, plus motivation. CORE (centerofrestorativeexercise.com) offers a two-hour evaluation, $275. Full access to gym is $59/month. Work with a personal trainer $75-$125. Gear: Total Access, NuStep, Easy Glide.
Orange County Goodwill Fitness Center, Santa Ana The OC Goodwill Fitness center, now in its seventh year, occupies a modern, 12,000 square foot space in an office park not far from the 55 Freeway in Santa Ana. This is the biggest, best equipped public disabilitycentric gym in the Southland. The center Premiere Issue - thehubsocal.com 27
The Evolution of POST-REHAB ACCESSIBLE EXERCISE
Aaron Baker and Taylor Issacs
features a huge range of state of the art, fully-accessible exercise gear. Dues are low—$30 a month, with scholarships for those who can’t swing that—to encourage anyone to join. The center has about 300 members but is not fully utilized. But Goodwill doesn’t worry about volume, or rent, thanks to an initial $7 million raised in part by Rogers Severson, an OC real estate developer who in 1986 was thrown from a mule resulting in a spinal cord injury. Elizabeth Toumajian, the center’s manager, says that the Goodwill Center was Severson’s idea, his dream. Severson was also quite generous over the years to more than a thousand members of the California wheelchair community; though he died in 2012, the SCI Special Fund (scispecialfund.org)—a non-profit he founded—continues to offer funding for school, therapy, equipment and more. Toumajian has a master’s degree in kinesiology and extensive experience developing therapeutic exercise programs for people with disabilities. “We have the ability to create a program that fits the needs of any ability level. unlike Project Walk or CORE,” says Toumajian, “Goodwill is a workout gym, more like a Bally Total Fitness or LA Fitness. Most clients come in, work out on their own, and then hang out. It’s a very active, multigenerational, multi-ethnic social scene.” OC Goodwill Fitness Center (ocgoodwillfitnesscenter.org) charges $30/month for full gym access; financial assistance available. Individual PT sessions are $75/hr. Gear: many state-of-the-art accessible weight and aerobic machines. 28 thehubsocal.com - Premiere Issue
Ex-Project Walk trainers Jason Wanstreet and Josh Salic started Strides in June, 2014. Wanstreet has a masters in kinesiology; Salic has a sports medicine degree. There are surely some distinguishing features to the Strides’ method but the basics derive from the same out-of-the-wheelchair sports training playbook: They work on functional movement, strength, cardio training, load bearing, stretching, etc., along with emotional, psychological and nutritional coaching. The shop features a body-weight supported treadmill, has plans to add an FES ergometer bike, and says a Lokomat is on the way—that’s the robotic system to ambulating on a treadmill. Strides (stridessci.com) charges $100/ hr. for individual training with free one-hour evaluation.
NextStep Fitness, Lawndale Janne Kouri, 31 at the time, was playing volleyball Manhattan Beach, 2006. Overheated, he dove into the surf. He didn’t see the sandbar. Kouri was paralyzed at C5/6, got sent to rehab, but it wasn’t enough. He wanted to at least near the word recovery. “I wanted to go to a proactive, progressive place, not one where you just learn how to live your life in a wheelchair.” Kouri scouted around, saw nothing in California, got wind of Frazier Rehab Institute in Louisville, Ky, the lead center in the NeuroRecovery Network (NRN), an activity-based research program set up by the Reeve Foundation. “It was the only place that gave us hope,” says Kouri. He stayed in Kentucky for a year, working hard on treadmill (locomotor) training. “After about four months of five-days-aweek training, I was able to wiggle my big toe,” Kouri said. “But the more meaningful results were better muscle tone, cardiovascular health and improved blood pressure.” He says there’s a cool mental part of the training: “It just felt great to stand up and ‘walk’ again.” Locomotor training is not widely available, but it has been validated in the medical literature; while some incompletely injured people get significant recovery, all participants gain health and fitness, a reduction in secondary conditions, and, thus, improved quality of life.
Alas, back in California, Kouri found no locomotor training sites—especially frustrating since the locomotor program in Louisville was researched and developed at uCLA. “I wanted to live here, and I wanted to get better. So my wife and I decided to build our own center.” In 2008, with encouragement from the NRN, and with the help of family and friends, Kouri opened NextStep Fitness, based in Lawndale, operating as a non-profit. It’s based on a fitness club model, not on medical rehab. “It is like going to the gym like anyone else does,” says Kouri. NextStep (nextstepfitness.org) charges $75/month for membership and $175 for an initial evaluation. Locomotor training is $175/session. FES, $50/session. Personal trainer, $75/hr. Lots of special gear including Therastride locomotor treadmill, FES bike, NuStep, standing frames, Versaclimber, Vitaglide.
VIP NeuroRehabilitation Center, San Diego v I P wa s fo u n d e d a s t h e M e d i c a l Rehabilitation & Kinematics Lab in San Diego by Bradley Marcus, an osteopath specializing in physical medicine and rehabilitation. vIP, the non-profit evolution of the lab, is managed by David Charbonnet, an unpaid volunteer. He is a former Navy SEAL, spinal cord injured, L1, in a parachute accident in 2011. He wasn’t getting the intensity of rehab he wanted from the vA. He checked out Project Walk but then came across Dr. Marcus, who happened to have a Lokomat machine, a quarter-million dollar robotic device that facilitates patterned walking suspended over a treadmill—locomotor training but without the need for three or four therapists. vIP also features FES ergometry, Giger tables (moves all four extremities at once) and even a climbing wall. Says vIP, the focus is on those who have difficulty moving secondary to stroke, brain injury, cerebral palsy, spinal cord injury, etc. Charbonnet’s SEAL background has driven him to regain far more function than he was told he would. He and his staff, mostly former Project Walk employees, try to drill some of his fearless perseverance into the clientele. Rates at VIP (vipneurorehab.com) are $115 for 90 minutes. Features the only SoCal Lokomat in a public gym.
PHOTO OF AARON BAKER AND TAyLOR ISSACS By CHRISTOPHER vOELKER.
Strides SCI Functional Fitness, San Juan Capistrano
NEVER MISS A MOMENT
Solutions for a Better Life Every day the professionals at MobilityWorks evaluate and find solutions for our clients who seek greater independence. As the nation’s largest mobility dealer, we offer:
ANY ACCESSIBLE VEHICLE* *Model years 2013 or newer. Cannot be combined with any other offer. Offer valid at the Pasadena and Van Nuys locations only. Must take delivery by 5/31/15 to qualify.
ANY ACCESSIBLE VEHICLE RENTAL# Cannot be combined with any other offer. Offer valid at the Pasadena and Van Nuys locations only. Offer expires 5/31/2015. #
• Chrysler, Dodge, Ford, Honda and Toyota accessible vehicles • Service and Maintenance • Rental Vans
Ford Transit Connect Wagon with rear entry fold-out ramp
• Roadside Assistance Contact us today so that we can find a solution that best fits your lifestyle.
to schedule an appointment
TWO LOCATIONS TO SERVE YOU! VAN NUYS
7720 N. Sepulveda Blvd. 818-321-6606
325 N. Altadena Drive 626-689-4338
USA’s largest accessible van dealer!
Zen and the art of
manning up! BY ALLEN RUCKER Photography By Xander Mozejewski
When I was asked to look into something called “Zen Warrior Training,” a personal growth program led by Sam Morris, a T-12 paraplegic, I was a little worried. This is LA. There is a Tony Robbins life-coach-in-training on every corner, 10-step soul-enhancing program in hand. Would I be entering a room of true believers and be grilled about my deepest secrets? Would I be asked to walk on hot coals, especially hard to do in a wheelchair? Is this how Scientology recruits its converts? I’m happy to say, having been around Morris—a kind of accidental life coach cum motivational speaker—and watching him work, my fears have abated. Sam’s advice and mental training come from the heart and from the crucible of experience —the experience of paralysis. At 24, Morris had just biked across the entirety of America with a group of teenagers when, two months later, he got into the wrong car one night and ended up in a wheelchair. He was very athletic—loved skiing, biking and snowboarding, among other sports—and was even contemplating a career in outdoor leadership. His identity was crushed. “My whole living revolved around using my legs,” he says. He went from marathon cyclist to a man who felt as helpless and dependent as a child. Then, over a two year period, he spent almost a year in hospital beds because of pressure sores, including a seven-month spell at Rancho Los Amigos undergoing five different surgeries on one intractable wound. He had a lot of time to think about his life and especially how to think about it differently. Out of this came “Zen Warrior Training.” “Zen,” in this context, means trying to live 30 thehubsocal.com - Premiere Issue
in the present and affect your life right now. “Warrior” means to attack with warrior-like commitment the ways you think and act that block you from moving forward. This is not about bumper sticker slogans. It’s about self-mastery. Most of us who become paralyzed go through some kind of transformation, however imperfect, and get back to our lives. The difference with Morris is that he carefully watched what was happening to him, or more importantly, how he could in some way take charge what was happening to him. Because he was initially embarrassed, ashamed and without sexual function, it was for him “difficult to feel like a full male.”
How to deal with male expectations, sexual or otherwise, became a principal focus. One of his regular group sessions is called “Zen for Men,” where men of all stripes, disabled and non-disabled, deal with their own paralysis of mind, spirit and circumstances. The epiphany for Morris came when he realized, well into his recovery, that two things were happening at once. First, he felt completely cut off from his own signposts of personal power—physical prowess and the ability to support himself and his family, two defining aspects of being a man in this culture. At the same time, he realized that he was slowly acquiring a form of power he had previous lacked: the power of resiliency.
His focus made a 180-degree shift. He could see, in his words, “the opportunity within the challenge” of paralysis. He no longer mourned his pre-injury self. He embraced who he now was. The reality of being paralyzed didn’t change, his attitude did. As he developed his training program, he realized that “attitude is 95 percent of what I do.” And not “attitude” in some “snap out of it” quick fix. He is talking about the unnoticed assumptions we often make in our instant reaction to things. Someone pushes your buttons,
Having the ability to detach yourself from destructive attitudes is not something you are born with. Nor is it divine magic. It takes practice. Probably thousands of hours of hit and miss practice. It’s, in other words, a big damn challenge. In Morris’s view, challenges are good things. Challenges are tests and demand a disciplined response. If you think, like many Americans, that a challenge-free life is Valhalla—no money worries, no one bossing you around or passing judgment on your worth—then you may be headed toward a life of impotency and regret. Here’s a quick example from Morris’s
he uses to find his way back from his own missteps and dead-ends. That’s too much to deal with here, so I’ll focus on one difficult one: Be accountable. Rather than blaming others or “fate” for your situation, own up to your own part in the proceedings. Morris: “Every time I’ve missed the mark and blamed someone else, it’s like giving away my own power to change. Accountability is necessary to feel like a free human being and in charge of my life.” None of this stuff is easy and may even sound like feel-good, you-can-do-it gobbledygook to some. But Morris’s thinking is grounded in the reality of his own postinjury experience and the benefits, really, of the enormous challenge he faced. When he talks to high school kids about how their attitudes can direct their lives, his wheelchair speaks volumes. “I’m not just making this stuff up or regurgitating something I read in a book,” he says. “These ideas have been thoroughly road-tested…by me. In addition to coaching private clients and businesses in Zen Warrior Training, Morris hosts bi-weekly classes in Santa Monica, and leads community talks and workshops throughout the country.
Visit zenwarriortraining.com for more information.
and you respond without thinking, then realize afterward you had no control over that reaction. Learning to see and control those reactions is at the heart of Morris’s work. It’s a tough thing to be able to note how you interpret some event or encounter— your attitude towards it—and then interpret it in a different way that isn’t self-defeating and maybe even illuminating. It takes a huge amount of awareness to be on top of this, and awareness requires mental discipline. Once you begin to develop this discipline, you can gradually take control of your life, paralyzed or not. “Attitude,” says Morris, “is a muscle. It takes regular training or else it goes weak.”
life: Lying in that hospital bed, he was overcome with despair. His life had come to a complete stop. He knew he had to escape that attitude and shift his intention. His new intention was to use this time to build his relationship with his wife and build a new system of thought. As he says, “I stuck with that attitude as strongly as I could through the next four months and miraculous things happened as a result.” He and his wife worked through some major problems, and he used the entire mental exercise to formulate his training. “It was my own next level of training for myself in the power of intention and attitude.” Morris has a set of seven principles that
Challenges are man’s greatest ally in disguise, and by learning how to conquer them, we develop power, vitality, influence and a greater connection to our authentic selves. True success is the result of a disciplined mind, a balanced personal life, healthy relationships and fulfilling work. Our thoughts are simply thoughts, our feelings are simply feelings, our experience is simply our experience. When we let go of trying to change things and embrace what is real in each moment, this simple yet profound truth will reveal our true nature. Warriors know that each obstacle in their lives is another opportunity to grow stronger and more resilient as human beings, and, thus, contribute in more powerful ways to the betterment of themselves and the world.
Premiere Issue - thehubsocal.com 31
URBAN JUNGLE taming the city by bus and train by Olivia Almalel
I was introduced to public transportation by an old friend pos-
sessed by an adventurous spirit that rivaled mine, equally eager to discover cities by way of their nooks and crannies. Popular locations and hidden gems in Los Angeles are better experienced first-hand, and, of course, our fair weather nurtures a wide range of activities to explore, from pop-up restaurants, live outdoor concerts, never ending farmers’ markets, art walks, and a plethora of entertainment options taking place non-stop from the top of the San Fernando Valley to the karaoke bars in Koreatown. My travels via public transportation began years before my reliance on a wheelchair, but indeed this sets up new challenges. Would my old hangouts be accessible? Since I didn’t drive, could I get around our lovely City of Angels as I had before? Why not? So, I gave it a go. There’s loads to do here, and a growing savvy about the importance of public transit. More businesses are populating retail spaces surrounding Metro stops, thus reducing the amount of trekking necessary to reach one’s destination. The folks at Thrillist were thoughtful enough to publish a Los Angeles Metro Rail Bar Map that breaks down the best bar within a 10-minute walk of every Metro stop. LA is more wheelchair friendly than ever, too. According to discoverlosangeles.com, “Los Angeles is one of the best cities in the country to visit for those
Access Paratransit accessla.org/home Los Angeles Metro Trip Planner socaltransport.org/tm_ pub_start.php Los Angeles Metro Home Page metro.net Real-Time Passenger Information nextbus.com Discover Los Angeles discoverlosangeles.com
32 thehubsocal.com - Premiere Issue
with disabilities…” The site offers “Metro Trip Planner” links on the overview pages for featured locations. City officials note that public transportation is gaining in popularity; though it is slow to evolve here in comparison to other landmark cities, it is on the rise in serving and meeting public needs by offering longer hours of operation with more options and modes of transportation. The Los Angeles County MTA boasts more than 2,400 buses covering 200 routes; the Metro Rail has six lines that serve 80 stations across the LA basin area. There’s no shortage of ways to get around, especially when traveling around the downtown area. Technology has evolved to almost eliminate uncertainty about riding the bus or subway. Mobile apps and mobile-friendly websites also take the guesswork out of bus arrival. I love the nextbus.com site! Indicate your location or bus or train stop and where you’re headed, and voila, the exact time of arrival of your ride pops up. The NextBus website is comprehensive as well as mobile-friendly with a clean layout. Bookmark the site and create a shortcut to your smart phone and all Los Angeles Metro buses local to you (GPS must be turned on). It is run by Cubic Transportation Systems, Inc., a self-proclaimed “…leading integrator of payment and information solutions and related services for intelligent travel applications,” with systems running internationally.
Photo of olivia almalel by Andrew Angulo.
Map 4 The Transit Coalition - Expo Aerial Survey https://thetransitcoalition.us/ConNP01.htm
Unsure what bus or train goes where? There’s an app for that! Oh Google Maps, how I love thee, let me count at least two ways. The navigation feature on Google Maps for trip planning offers a “bus” option with bus stop ID numbers labeled on the time-stamped step-by-step trip information, while clicking on “Street View” of the surrounding areas allows you to inspect the sidewalks you’ll be wheeling over while offering a bird’s eye view of surrounding neighborhoods. Smart phone friendly, for sure. Sometimes buses and trains aren’t an option. If you’re looking for affordable curb-to-curb service, the Department of Transportation offers a government transportation program, Access Paratransit, a shared ride service, serving Los Angeles County, created to comply with ADA transportation guidelines. It’s safe, more direct and is cost-effective: $2.75 for trips 19 miles and under, and $3.50 for trips greater than 20 miles. Visit accessla.org for details on eligibility, riding guidelines, service areas and operating hours. Rideshares such as Uber and Lyft are territory we will explore in the future. In my experience, taxi cabs are not very reliable when it comes to wheelchair accessibility, but companies are beginning to offer wheelchair accessible vans. Just how easy is it to find a wheelchair accessible taxi? A random Internet search provided information for the L.A. Checker Cab Company. They offer specialized vans equipped for wheelchairs and state that their drivers are trained to properly handle mobility devices during transfer, and while entering and exiting the van. I cannot stress enough the importance of knowing how to secure your own chair so as to reduce the risk of damage. You can make a reservation online or over the phone. I was immediately connected with a live person and was informed that a van could be available within the hour, not bad for a Friday night, right? So, the ABCs of getting around Los Angeles as a wheelchair user can be as simple as: (A)ccess Paratransit, (B)us/Metro and (C)abs. Los Angeles is a huge county, but getting around our urban jungle isn’t impossible. Technology is on your side and the wonders of the city lay in wait, ready to be explored. http://kaywa.me/NbIH3
Download the Kaywa QR Code Reader (App Store &Android Market) and scan your code!
Premiere Issue - thehubsocal.com 33
HUB tribute PHOTOGRAPHY BY CHRISTOPHER VOELKER By Sam Maddox
Christopher Voelker died last fall, by his own hand in his home in Northridge. He was 53. Voelker was a brilliant photographer, a collaborator, and a close friend. I miss him every day; he would have loved The Hub. Voelker was spinal cord injured, a low quad, as a teenager. He discovered magic using a camera and became a master of light and shadow. He had a long career shooting for the LA 34 thehubsocal.com - Premiere Issue
entertainment business. He loved props and costumes, and makeup, and was the consummate entertainer. He had uncanny timing to nail the moment. Voelker is remembered here for his catalog of images of people with disabilities; he resisted the “stigma of mindless stereotyping,” and allowed each subject to emerge fully human and without tragedy. The individuals on these pages, captured by Voelker, are
contributors or advisors to this issue of The Hub. Thank you to Melanie Manson, Voelker’s widow, for access to the images. Most of them were among 40 individuals photographed for the Paralysis Resource Guide, available for free at paralysis.org.
Visit voelkerstudio.com for more of Voelker’s witty, passionate and edgy portfolio.
I hope that my legacy will be one of not looking at my disability, but of looking at the tangible works that have come from my dreaming while awake. —Christopher Voelker
Premiere Issue - thehubsocal.com 35
business profiles BlueSky Designs, Inc. Business Owner: Dianne Goodwin 2637 27th Avenue South, Suite 209, Minneapolis, MN, 55406 888-724-7002 | mountnmover.com | blueskydesigns.us Describe your business. Did you find it, or did it find you? I founded BlueSky Designs in 1997. We have a small creative group that’s passionate about designing and making cool, innovative products so people can do things more easily and independently. I’d worked as a rehab engineer, designing custom solutions and found existing wheelchair mounts were limiting and unattractive. We designed and manufacture the Mount’n Mover, the most accessible mount there is. We’ve also designed a wheelchair-accessible tent and ergonomic gardening stool.
Where do you go when the going gets tough? I go for walks with my dog, Harley, and take in the sky, trees, lakes and stars. What’s your hidden talent? I love to play with words and write whimsical poems—hence, Mount’n Mover. Dianne with Harley
What’s your biggest job perk? Hearing our product has made a huge difference in another person’s life.
How are you involved with both the community and your customer? We talk to many customers daily, helping them figure out what they need, or talk them through setting up and using the Mount’n Mover. We LOVE to connect in person—at expos or in our studio. When developing products, we involve staff and clients at rehab centers to ensure our products address real needs and are easy to use.
And finally, customer service is…? Essential. You need to listen to your customers, be respectful and responsive, provide an excellent product and support your customers every step of the way.
The team at BlueSky Designs, Inc.
Why is your staff the best in the business? We are customer-centric—we love our customers and their families! We assume customers want to do things as independently as possible. We listen to understand their needs and find the best solution. We’ll even customize the product! If they need “on-site” support, we’ll join them via Skype. What life accomplishments are you most proud of? Two things: Developing products that have improved the lives of thousands of people worldwide, and building a business and fantastic team that develops and provides excellent products and service. Who is your role model in business or in life, and why? In business and life: Barry Romich. He co-founded PRC, the speech device company. He grew a successful business, which he ran with heart and soul, and founded an AAC non-profit. Since retiring, he’s helped start a hands-on innovation lab to inspire future engineers. 36 thehubsocal.com - Premiere Issue
If you could meet someone living or dead, who would it be and why? Maurice Sendak or Theodor Seuss Geisel (Dr. Seuss). Both men were wildly creative, thought outside the box and their books were not only entertaining, but had multi-layered meanings.
Diestco MFG Corp. Business Owner: Daniel G. Diestel 370 Ryan Street, Suite 40, Chico, CA, 95927 800-795-2392 | diestco.com Diesto MFG Corp.
E Describe your business. Did
you find it, or did it find you? Diestco MFG Corp. is a nationally leading mobility accessory company providing quality, U.S. manufactured answers to problems and obstacles individuals face daily while using their wheelchairs, scooters and walkers—from unbreakable cup holders, armrests and seatback bags, to canopies and covers for transporting, plus threshold ramps, trays, folding safety flags, lights and much more. The business found me. One day while managing radio stations in Chico, CA, I noticed a man in a wheelchair waiting at a light during a hot August day. He looked spent, and I had a thought—isn’t there anything on the market to provide individuals using mobility devices some sort of protection or relief from the intense sun and/or rain? After researching, I discovered the answer was “no,” so I applied for
a patent, gave my employer notice and started Diestco MFG Corp. with no manufacturing experience other than shop classes.
Diestco’s Regular Powerchair Cover
Diestco’s Monster Bag
How are you involved with both the community and your customer? I’m very involved with both our immediate community as well as our customers throughout the U.S. Many organizations have benefited from Diestco MFG programs of support—from free listings on our website to donated products for their fund-raising efforts. I take pride in going the extra mile for individuals who are unable to locate a specific solution to their individual need. Why is your staff the best in the business? My staff is the best in the business because they care and understand that helping people is far greater than making money. They are trained to listen, assess the situation and develop a logical plan of attack; this might be as simple as helping to locate a dealer, who can work on their scooter or wheelchair (we do not offer repair services at our facility) or it might be taking the time to walk an individual through the mounting of one of our products. They have been versed in the area of complete assistance. Where do you go when the going gets tough? I’m very fortunate to live in northern California where I’m provided with great open spaces to clear my head. I go on walks and take in all that nature has to offer—the sounds, the smells and the sights… especially at sunset. If you could meet someone living or dead, who would it be and why? I would love to sit down with Jimi Hendrix; or sit in on a jam with him. We have a full studio in our shop where we play music every Friday night with many very talented musicians; Jimi Hendrix, John Lennon and Neil Young have always been at the top of this playlist. Neil Young’s son, Ben, who uses a wheelchair, has a bunch of our products. And finally, customer service is…? Customer service is listening, first and foremost. It’s very difficult to solve a problem without listening to it being explained; once understood you can begin to solve the situation or get advice from another person, but you must be honest—not only to the person you are assisting, but with yourself. Believe in yourself honestly and you will be good at customer service.
Do you know that our editorial is not paid for, nor can it be purchased? In fact, our Business Profiles are not paid advertisements. If you’d like your business profiled, please email us at email@example.com, and we’ll walk you through the process. Thank you!
Premiere Issue - thehubsocal.com 37
GEAR GALLERY NEW PRODUCTS FOR FUN AND FUNCTION
OFF THE BEATEN PATH Get off the grid and into the great outdoors with off-road independence. Thanks to the Tomahawk, the new badass all-terrain wheelchair made by Rocket Mobility, you’ll, “Go far. Fast.” The base model weighs in at 380 pounds, has a seven-mile range and can motor along at six miles-per-hour. Accessorize with a cup holder or gun rack. $10,000 at, rocketmobility.com
SPLASH Join the fun of sit-down paddle boarding! It’s safe, easy and was created “to break down barriers, and to make sure nobody feels left behind,” says Onit Ability Paddle Board inventor and Hawaiian surfer Kawika Watt. “I felt a feeling of freedom as I was navigating through the water on my board,” says Push Girls star Mia Schaikewitz, pictured here aboard an Onit. Try one out at the Newport Aquatic Center. $5,000 at onitabilityboards.org
SKIN SAVVY In addition to losing mobility when he was spinal cord injured, Francesco Clark lost the ability to sweat, leading to chronic breakouts. Nothing seemed to work, so he and his physician father developed botanically-based formulas to rebalance and completely clear up his skin. In 2005, he began selling Clark’s Botanicals online; now it’s a full-fledged skin care system available in many stores. For dry or stressed skin, try the hydrating and softening Smoothing Marine Cream. $115 (1.7 oz.) at clarksbotanicals.com 38 thehubsocal.com - Premiere Issue
RAMP UP When you need a little lift, this three-feet-by-30-inches (when it’s folded out) portable Singlefold Ramp from Prairie View Industries can help. It fits in the trunk, weighs just 15 pounds, has a built-in handle and allows you to access a six-inch step with ease (other sizes are available to accommodate higher steps). $200 at pviramps.com
THE CHIEF 107-ZRx
AT REDMAN POWER CHAIR WE BELIEVE A POWER CHAIR SHOULD DO MORE, A LOT MORE! The Redman Chief has the unique ability to stretch your hip flexors, hamstrings and heel cords. No other chair has these capabilities. Call or email us today for complete details.
1.800.727.6684 â€˘ www.RedmanPowerChair.com
H E L P I N G YO U R E C L A I M YO U R L I F E
S PINAL C ORD I NJURY LAWYERS U N M AT C H E D Q UA L I F I C AT I O N S , R E S U LT S A N D CONNEC TIONS TO THE SPINAL CORD COMMUNIT Y Details on page 20 • Spinal Cord Injury • Paralysis • Accidents • Brain Injury • Wrongful Death • Medical Malpractice • Amputation Steven Heimberg, M.D.
LAWYERS firstname.lastname@example.org Hablamos Español
(213) 213-1515 Free Consultation
No Fee Until Recovery
The center of things, that’s where it’s happening, and that’s where we are coming from. Welcome to the first edition of The Hub Southern Cal...
Published on Feb 25, 2015
The center of things, that’s where it’s happening, and that’s where we are coming from. Welcome to the first edition of The Hub Southern Cal...