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Meet the Chair slayer! •Gail’s World of Inclusion •My Scar: Redemption in Ink •Freedom in Living thehubsocal.com
september/OCTOBER 2015
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theHUB at the center of everything
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September/October 2015 issue
FEATURES
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20 21
Pg. 20 Scars and Ink The Art of Imperfection Pg. 22 Meet the Original Chairslayer Rob Parsons Gets the Drift Pg. 26 Gail Williamson, Agent of Inclusion Opening Hollywood to Diversity, One Actor at a Time
DEPARTMENTS Pg. 6 Editor’s Note Sam Maddox Pg. 8 Contributors The Hub team Pg. 10 News The SoCal Beat Pg. 11 Calendar Events & Activities
Meet the Chairslayer
The Art of Imperfection
Rob Parsons is perfecting the art of the drift. He turns loose his tire-smoking Nissan on the track, sliding through the corners just this side of chaos. He’s going pro, and he’s got a way to share the fun with other folks in wheelchairs.
Scars signify vulnerability. But also closure. And healing. Carlana Stone displays hers as symbols of beauty and pride. She annotates a complex tattoo integrated with her scars. There is joy, there is sadness. Light and dark. Balance.
Pg. 12 Charity Spotlight Freedom to Live Pg. 14 Health is Wealth Skin Saving Strategies Pg. 18 Travel Cruise Life Goes ADA Pg. 28 Gear Gallery Always Moving Ahead Pg. 30 Outtakes Triumph Foundation Casino Night and Special Olympics World Games 4 thehubsocal.com - September/October 2015
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theHUB at the center of everything
editor’s note Drifting into Autumn
Southern California
inclusion and atonement
Welcome to autumn. This issue of the Hub features a guy who’s perfecting the art of drifting. As cool and casual as it may look on Fast and Furious, you’d be nuts to try this yourself. Rob Parsons likes to put his highlymodified Nissan into a controlled skid, smoking up the blacktop, thus reducing the arc of each curve to minimal, ridiculous tightness. Say hello to Gail Williamson, whose gig as a Los Angeles talent agent has created inclusion and opportunity for actors with disabilities. And then there’s Chris Benson. One day Chris showed up at my office in Boulder, Colo., dang near 30 years ago. She was looking for work. She was from Sioux Falls, had broken her neck at 16.. I liked her work, I liked her style, a sort
of high prairie insouciance. So I sent her on a month-long photo shoot to Texas, Arizona and California. Worked out beautifully for all concerned. She probably would have been shooting for me all these years except she moved back to South Dakota in 1993, got a busy studio going and acquired a child. Chris had volunteered to shoot portraits of kids awaiting adoption, the idea being that better images might improve placement. It worked. She fell for one of the kids herself, admits she didn’t think it all the way through, and adopted her. Tatiyanna was 3, Native American, crazy Don King hair, “a little brute,” says Chris. The kid is now 16, fierce and self-determined, but hardly brutish. One of those shoots was with Carlana Stone. I’d been hoping for a while to get Carlana in front of a camera – it occurred to me that she and Chris might click. They really embody similar mythic hero paths: monumental change; struggles along the way; coming to terms/ atonement; and rebirth. The last time I saw Carlana she was in full leathers, having just climbed off a Harley three-wheeler. Well, the bike is gone (along with a marriage, I gather). But I heard about her elaborate tattoo; she was a model in the very cool Raw Beauty NYC project (rawbeautynyc.com). I saw a perfect match between lens and subject; I knew Chris and Carlana would find their tribal/mythic link, and indeed you can see this connection in the image of Carlana, page 20. —Sam Maddox
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Volume 1, Number 4
• Editor Sam Maddox Managing Editor Megan Wiskus Art Director George Kenton Graphic Designers David Norby, Aaron Roseli, Gary Zsigo Circulation Coordinator Cristina Banuelos cristina@thehubsocal.com
• Contributors Olivia Almalel, Chris Benson, Candace Cable, David Radcliff, Allen Rucker, Carlana Stone
• Advertising Sales Valerie Teague Disability Resource Link, Inc. 310-902-2908 valerie@thehubsocal.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, Valerie Teague, Alan Toy
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contributors Olivia Almalel
Chris Benson
Olivia Almalel was paralyzed by a hit-andrun driver in 2008, T10. She’s an avid proponent of public transit and works full time as a pharmacy technician. She lives in Northridge. Chris Benson injured her spinal cord 30 years ago, and though her photography business is based in South Dakota, she loves coming to Southern California where the large and active wheelchair community exposes itself to her creative photojournalism.
Candace Cable
David Radcliff
Candace Cable joined “the club” after a spinal cord injury in 1975; she briefly went down the path of pain and anger, then began a legendary 27-year career as an elite athlete, winning nine Gold Medals in the Paralympics in winter and summer sports. David Radcliff is a member of the Committee for Writers with Disabilities at the Writers Guild of America West and has lectured widely on issues of disability and media. A graduate of USC and of
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Allen Rucker
Carlana Stone
UCLA, David is currently a finalist for the Sundance Episodic Story Lab and is a writing instructor at The New York Film Academy. Allen Rucker is a Hollywood writer and author or co-author of 11 books of humor and non-fiction. His account of becoming paralyzed in middle age (by transverse myelitis), “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 widely on the subject of disability. He lives in Los Angeles. Carlana Stone is a Los Angeles-based television producer and media entrepreneur. She was spinal cord injured at age 17. She graduated from UC Berkeley with a degree in Slavic languages, is a licensed pilot and also enjoys scuba diving, skydiving and skiing. Says Carlana, “Circumstances don’t create our character — they reveal it.”
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NEWS NOTES ETC. The SoCal Beat
having to worry about someone coming to tie my shoes everyday.” Three years later, Walzer is in college, sporting his FlyEase, an “easy-entry footwear system.” The new shoe doesn’t have laces—it uses a wraparound zipper system with a larger opening at the back, making it easier
to slide the foot in and out. The Nike Zoom LeBron Soldier 8 FlyEase Men’s Basketball Shoe (approximately $130) is part of the LeBron James line. Says James: “Matthew inspired us at Nike to be able to bring something special that will not only be for himself but also for the masses.” nike.com
BMW, The Ultimate Wheelchair Machine
Nike’s Easy-On Sneakers Matthew Walzer was an active guy with cerebral palsy looking to solve a footwear problem, so he wrote to Nike. “At 16 years old, I’m able to completely dress myself, but
my parents still have to tie my shoes. As a teenager who is striving to become totally selfsufficient, I find this extremely frustrating, and at times, embarrassing,” Walzer wrote. “My dream is to go to the college of my choice without
BMW’s California design group is developing a new racing wheelchair for athletes on the U.S. Paralympics track and field team in the Rio 2016 Paralympic Games. The German car company has a six-year partnership with Team USA and hopes to do for wheelchair racers what they did for the U . S . t wo - m a n bobsled team, which overcame a 62-year medal drought at the Sochi 2014 Olympic Winter Games riding in BMW sleds. Designs for the race chairs are still in development, in collaboration with the U.S. Paralympic track team. The idea is to make the device lighter and more aerodynamic. “Ultimately, our goal is to make sure the athlete’s energy is used to propel themselves, versus the chair they’re sitting in,” said BMW in a press release. Improvements will include a redesign of its chassis, application of BMW’s aerodynamic efficiencies, enhanced athlete restraint and carbon fiber durability, as well as steering and braking advancements. Elite racers can expect the chairs to be delivered in early 2016.
Rancho Gets Major Re-Do
T
he Rancho Los Amigos National Rehabilitation Center is getting a $418 million renovation and expansion, including a 12,000-squarefoot wellness and aquatics center scheduled to open next summer. It’s expected that renovations on the entire 42-acre campus in Downey—including a therapy swimming pool with underwater treadmill, weightlifting room, dance studio, and cardio and yoga rooms—will be
completed in 2020. Rancho Los Amigos, an LA County facility that provides specialized care for people with disabilities, including spinal cord and brain injuries, strokes and neurological disorders, is one of 14 federally supported Model Systems Centers for spinal cord injury. “This is a new mission,” says Dr. Mindy Aisen, chief medical officer at Rancho Los Amigos. “The mission from the fed-
10 thehubsocal.com - September/October 2015
eral government and part of the Affordable Care Act is to take care of patients in a coordinated fashion, integrated primary care.” According to Aisen, renovations will allow for better care. “Having doctors’ offices closer to each other is much more effective. Physicians and therapists can collaborate more easily,” Aisen says. “This will be the patient’s medical home—one place for all things health-related.”
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calendar Upcoming Events of Note
September 11 An Evening in Casablanca, a gala event benefitting Casa Colina Children’s Services. 6:30 p.m. to 10 p.m., The Candlelight Theatre, Claremont. September 12 – 19 Mobility and Accessibility Art and Inventions Exhibit, California State University, Northridge. Hosted by Opulent Mobility, dreamsbymachine. com September 19 SoCal Surf & Skate, adaptive surfing. Final surf day of the 2015 season, Harbor Cove Beach, Ventura. Free, open to everyone. See socalsurfandskate.org. September 20 Night by the Ocean, annual
benefit for Life Rolls On, 5:30 p.m – 9:30 p.m. , Jonathan Beach Club, Santa Monica. Cocktails and family-style dinner on the sand, live auction, and a sunset acoustic concert by Young The Giant. Bonfire and gourmet s’mores. Individual tickets are $250. liferollson.org/nbto/
Santa Fe. Hosted by John Schroeder, PGA & Champions Tour player, and Greg Welch, Ironman Triathlon World Champion. Special guest Phil Mickelson. Freedomtolive.org
Have an event you want to tell everyone about? Visit the hubsocal.com and enter it into easy-to-use system!
October 19 Casa Colina Golf Classic, South Hills Country Club, West Covina, benefits Casa Colina’s Outdoor Adventures, a unique program for individuals with disabilities to participate in sports and recreation in the outdoors. October 26 Freedom to Live Foundation golf tournament, Fairbanks Ranch Country Club, Rancho
October 3 Spinal Injury Games, Rancho Los Amigos, 9:30 a.m. to 2 p.m., 7601 E. Imperial Highway, Downey. Opportunity for beginning or novice wheelchair sports enthusiasts to experience a variety of wheelchair sports. Free for participants, includes lunch and teeshirt. Registration necessary. Special appearance by the Laker Girls. The LA Kings Ice Crew and Galaxy Star Squad will be giving out great prizes and chances to win autographed merchandise. ranchofoundation.org/sig
September 15, 16 Camp Pendleton Air Rifle and Pistol Tournament, 9 a.m. to 3 p.m., Wounded Warrior Hope and Care Center, 27833 Lakeside Drive, Camp Pendleton. Sponsored by Paralyzed Veterans of America. Competition is open to veterans and service members with physical disabilities — both ambulatory and wheelchair athletes. Free. Contact Fabio Villarroel at 800-424-8200, ext. 655 or 202-416-7655.
October 3 Fore Pete’s Sake benefit golf tournament in support of Quad Foundation and the Reeve Foundation. Twin Oaks Golf Course, San Marcos. Register at quadfoundation.org
September/October 2015 - thehubsocal.com 11
charity spotlight The Alternative to the Nursing Home By Olivia Almalel
freedom to live in the community
Mother-Daughter Freedom to Live Team: Mary Williams and Sian Welch.
You broke your neck; they tell you won’t walk again. You might not breathe again on your own. Your insurance company has set in motion a deadline, way too soon, for leaving the relative comfort and safety of rehab. Primal instincts kick in as you try to slow things down. You and your loved ones coordinate outpatient nursing care, transportation, medical equipment and supplies. Anxiety, anyone? Now try to figure out where you’re going to live. Is your old place accessible? Can you and your wheelchair fit through the door? How about getting in the bathroom? Where do you go if you can’t go home just yet? A nursing home? I mean, it’s not like you can just crash at someone’s house, right? If you’re lucky, you’ll find out about Freedom To Live (FTL), a non-profit agency in the Los Angeles area created to bridge the gap between hospital discharge and the transition to living independently. Freedom 12 thehubsocal.com - September/October 2015
to Live is not a skilled nursing facility, it’s a home, in the community. FTL’s mission is to provide individuals with safe, affordable short- and long-term housing, expert consulting for the individual and their families, and comprehensive training in preparation to move out on their own. Tenants who are accepted to the program are carefully screened to assure they are motivated for success. Tenants hire and manage their caregivers, and use their own money to pay for rent, utilities, and supplies. FTL subsidizes rent according to a person’s financial needs.
A New Start FTL began in 1982 as New Start Homes, the brainchild of Mary Williams R.N., who championed a community-based housing model for people whose only option was a nursing home. She sold New Start to long-term care provider CareMeridian in 2010. But Mary and her daughter Sian Welch did not abandon their mission. They
formed Freedom to Live, which now operates two homes; Welch, of course, is no stranger to those with complex disabilities; she was raised around quadriplegics and others with neuromuscular disabilities. She is president and executive director of FTL. Welch, a former professional triathlete, acts as a coach and mentor to the residents in the home. Janette Knudson, a former resident in a New Start home, is a social worker who meets with clients to focus them toward their goals and to make sure the right skills are taught, including selfscheduling, direction and coordination of self-care, and the details of home health programs. Here’s a list of needed skills: • Learn to teach caregivers to perform her basic care, such as bathing, dressing and undressing, transferring, bowel, bladder, suctioning, etc. • Know all medications, how to order and administer them, and the side effects of all medications
• Be knowledgeable about ventilator and settings and pass a test to prove it • Know how to order needed supplies • Management of equipment by calling for repairs when needed • Learn how to interview, hire and fire caregivers, and be able to communicate appropriately with caregivers • Be proficient in handling finances using a computer • Communicate directly with physicians regarding her medical needs
The Ideal Client Who is an ideal candidate? Said Welch, “It’s somebody with a need, an ability, and a desire to make the journey with the intent to see it through.” A perfect example is Amy Labagnara, who languished for five years in a nursing home living, not believing she would ever live on her own again. After much planning, she was moved into a Freedom to Live home three years ago. Here’s Labagnara: “I learned that FTL could provide a pathway to an independent life, living at home. Mary and Sian coordinated everything for my transfer out of
the nursing home and I began my first step toward gaining independence. I have hope for my life now.” No doubt, Labagnara is in a better place; she recently enjoyed sailing with Casa Colina’s Land Meets Sea sports camp. She says she is able to be more present with her daughter, who is being raised by Amy’s mother. None of this would have been possible from a nursing home. Next, Amy is going to raise money to purchase a wheelchair-accessible van. She is well on her way to independence. Labagnara lives at Freedom to Live’s “San Jose” house, in the suburbs of Granada Hills. There are eight bedrooms in this completely accessible house. The large open back yard offers space to wheel around, has a pool and plenty of grills to get the party started. The quiet neighborhood is minutes away from a commercial retail area with all the SoCal amenities -- movie theater, super markets, banks, a variety of dining options, gas stations, churches, and of course, a Starbucks. Welch sees Freedom To Live at the forefront of hospital-to-home transitioning. Two
major goals include becoming a readily available option for those being discharged from the hospital without needing aroundthe-clock critical nursing care, and being able to produce a pre-qualified resident that is ready and trained for Section 811 housing (subsidized housing to persons with significant and long-term disabilities, including supportive health services so one can live with dignity while being able to integrate into their own community. FTL residents, having already learned how to direct their care, will have an impeccable record of paying rent on time, have a clean living history, and will already have a caregiver schedule, making them ideal candidates primed for the top of the waiting list. I was paralyzed by a car at 33 years old and cannot see myself living in a nursing home, whether it be one day or one month. I am empowered by knowing that an organization like Freedom to Live exists and is growing. To apply, donate, read about the history, or join the annual Freedom To Live Golf Tournament, October 26, visit freedomtolive.org
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HEALTH IS WEALTH Save Your Skin By S. Nelson
can’t take the pressure Fact: Pressure sores can be life threatening. Infection can spread to blood, heart and bone. A sore that won’t heal could lead to amputations. For quads, the risk of autonomic dysreflexia is significant. Because one is less active when dealing with a pressure sore, the risk is higher for respiratory problems or urinary tract infections. This article hopes to reinforce one basic idea—you do not want a pressure sore. That said, you must take the lead in making sure you don’t. Skin issues are stubborn and can become quite complicated. Do you remember the lessons from your rehab nurses? Skin health can quickly change from a small Stage-1 red spot to a nasty Stage-3 or 4 cavity that won’t close and is very likely infected. Seriously, do not let your guard down. If you want a visual reminder what pressure can do to skin, do an internet search for bedsore and see the images for what a Stage 3 or 4 wound looks like. But don’t do this before a meal.
Let’s talk about your skin, particularly the parts you sit on. Skin breakdown comes with the gig after spinal cord injury or paralysis. If you can’t feel it, you can’t tell if there’s pressure. Pressure is not good. Maybe you’ve been lucky and haven’t had problems, but no doubt you and everybody in the community knows someone who had a pressure sore go rogue and turned their life upside down. Pressure sores rob you of your time and money. If a sore won’t heal, you may be headed for a plastic surgeon, who moves nice healthy skin off the back of your leg to put on the back of your butt, or hip bone. It takes weeks for the flap to settle in, and all that time, you may not be allowed to sit. You could be months away from work or school; part of that time might be chilling in a skilled nursing situation. Relentless Attention Sores begin with compression, the force of bone against a hard surface when one remains in a single position for too long. Reduced tissue blood flow can lead to cell death. Another type of force is sheer—stretching and folding of skin, which can also pinch off of blood vessels. Here’s the key thing to remember about a pressure ulcer: no pressure, no ulcer. That doesn’t mean pressure sores are completely preventable, although about 95 percent are, but it does mean a vulnerable person’s first line of defense against getting a pressure sore is relentless attention to pressure relief. Do those weight shifts like they taught you in
14 thehubsocal.com - September/October 2015
rehab; if you can’t remember, there’s a free app in the Apple store called Pressure Ulcer Prevention. It has a way to record and monitor daily inspections but also features a reminder function, which might be useful. Or annoying. If you are unable to weight shift for pressure relief, make sure you have the right gear. A tilt-inspace wheelchair seating system, for example, might be in order. Daily skin inspection, yes, use that mirror. Do it. Or have it done. If you see something and it’s just a red spot, getting off it for a day or two should calm it down. Any evidence of a pressure sore seen on the skin surface, no matter how small, should be regarded as serious—the primary damage is below the skin surface. If your skin pigment is dark, it may be harder to detect an early stage sore. Be extra vigilant for any signs of skin hardness or color change. Don’t wait to get help. If you let it go and it causes the surface of the skin to break, you are headed for trouble and you’re going to be seeing the clinic. Prevention advice: Keep the skin dry and clean, try to keep your weight down. Make sure your cushion is appropriate, and remember to avail yourself to the services of a professional seating and positioning person at your full-service rehab. Be careful with hot water. Eat well—protein deficiency can lead to skin breakdown. Drink lots of liquids. Smoking may not bring on a pressure sore but there is solid evidence that tobacco limits the body’s healing process. It’s your skin. Be in charge of keeping it safe.
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travel TRIP Carnival Settles ADA Suit By Candace Cable
cruise with confidence THREE LOCAL CRUISES Here are three easy trip packages coming up soon. The Norwegian Jewel is an older cruise boat but it’s got plenty of amenities. Leaves LA October 4, 11 and 18 for a very popular seven-day round-trip Mexico cruise, including Cabo, Mazatlan, Puerto Vallarta. Fare starts at around $750 a person. How about a month at sea? The Holland-America Zandaam leaves San Diego October 7 for Mexico, Guatemala, Ecuador, Peru, Chile, Argentina. You’ll have to fly home from Buenos Aires. Runs about $5100 per person for a room with a balcony, which you do want. How about a quick one? Carnival Imagination leaves San Pedro October 29 for two-nights down in Baja. Spend part of the day in Ensenada. Plenty of food and drink and fun stuff for kids too. Pretty inexpensive, starting under $200 a person.
Resources: wheelchairtraveling.com, easyaccesstravel.com Easy Access Travel easyaccesstravel.com Wheelchair Traveling wheelchairtraveling.com Open Doors Organization opendoorsnfp.org
The Norwegian Jewel, southbound.
You have to admit, they do make it look pretty cool; the advertisements for cruise travel are glamorous, fun, exciting, and quite possibly, accessible. You’re psyched to go but maybe you’re like me, worried that if you booked a cruise, you’d arrive on the ship only to find your needs aren’t going to be met, or that you’d be stranded at some exotic port of call, unable to get off the ship. In fact, respectable accessibility has always been the upside of cruising for people with disabilities, but it just got a whole lot better, at least on the 62 ships operated by Carnival Corp. The company recently settled with the Department of Justice (DOJ) to create better access for passengers with disabilities on Carnival Cruise Line, Holland America Line and the Princess Cruise brands. This is the first time DOJ has required a cruise company operating for the most part in offshore waters to comply with the American’s with Disabilities Act (ADA). “The ADA guarantees people with disabilities equal access to public accommodations,” said head of the Civil Rights Division Vanita Gupta. “Cruise ships are ‘floating cities’ and provide a wide range of facilities and activities subject to the requirements of the ADA, such as lodging, dining, entertainment, recreation, and medical facilities. People with disabilities who travel must be able to count on getting the accessible cabin they reserve,
18 thehubsocal.com - September/October 2015
Carnival Imagination: now featuring ADA compliance.
and the cruise lines must provide equal access to the choice of amenities and attractions that passengers expect from a major cruise company like Carnival Corporation.” Carnival agreed also to pay a civil penalty of $55,000 to the United States and $350,000 in damages to individuals harmed by past discrimination. The settlement requires Carnival Corp. to make three percent of the cabins on its ships accessible, the company said compliance would not mean a greater supply of cabins for travelers with disabilities. The agreement specifically identifies three types of accessible cabins on cruise ships – fully accessible cabins, fully accessible cabins-single side approach, and ambulatory accessible cabins – that will be available to individuals with disabilities.
Further, Carnival has agreed to develop a plan to improve the accessibility of a minimum number of cabins, websites, mobile applications, reservation systems and improve the over all physical accessibility of the ship as well as pay some penalties to the federal government and damages to
Norwegian paid a $40,000 civil fine and $100,000 in damages. Debra Stein Briscoe Kerper, owner of Easy Access Travel, has been in the travel booking industry for 23 years. She says one cruise company stands out when it comes to access for people with disabili-
The port at Mazatlan, easy access cruise resort from SoCal.
complainants. Carnival will be adding an Executivelevel ADA compliance officer or Complaint Resolution Official (CRO), just like all the airlines are required to have at all the US airports, as well as on-board ADA officers that will address issues that arise while at sea. Laurel Van Horn, Director of Programs at Open Doors Organization (ODO), a nonprofit that educates the travel and tourism industries on the access laws and disabilities awareness, says “CRO’s have long been needed in the cruise industry to truly create inclusion and access for people with disabilities.”
Cruise Lines: No ADA Cruise lines have long argued that their foreign-flagged ships are outside ADA jurisdiction; they lost that argument in a case decided by the U.S. Supreme Court in 2005. In 2010, another of the big cruise outfits, Norwegian Cruise Line, settled with DOJ regarding its cruises in Hawaii, assuring that deaf passengers got aids such as a sign language interpreter or a written transcript of emergency drills, and that guests in wheelchairs had full bus access to airport transfers and shore excursions.
ties. “Royal Caribbean truly leads the way for accessibility at sea,” she said. “They are my first choice when I put a cruise package together for my clients. All cruise lines have a shore excursion department; Royal Caribbean even has a shore access department. Ron Pettit, the Access Compliance C o n s u l t a n t f o r R oy a l C a r i b b e a n International, said his company thinks of itself as an industry leader in accessibility. “We now have three disability advisory boards and we are the first cruise line to be certified autism friendly. Families that have a person with autism seldom travel; we want to help them feel more welcome and accommodated when taking a vacation.”
So Get Going The travel market offers many choices for cruise vacations, so do your research and know what you want out of a cruise before you go. A good place to begin is with travel agents that specialize in cruising such as Kerper’s Easy Access Travel. The WheelchairTraveling.com website offers a large database and online community for accessible cruise insights. Here are few cruise travel tips.
Seek out the newest ships: The newer the ship, the more likely it will be accessible for all guests, especially now that the ADA has a say in the cruise business. Get the ‘special needs’ details and be a good shopper. Cruise lines compete for your business; find out just what services are available and what staff will or will not do (do they require a nondisabled person to travel with a guest needing assistance?). Line up your equipment needs in advance: Generally, you’ll need to bring what you need but some ships may have a limited number of loaner wheelchairs or other equipment available. Have a service dog? Book early. First, you get the best choices if you are early. Also, find out from a travel agent or the cruise line what certifications you need and whether the dog is ok to bring ashore at various ports. Plan ahead. Find out if the boat will actually dock at a pier, providing easier wheelchair access, or does shore access require transfer to a tender. Know what you want onshore. How accommodating are ground transportation services and attractions at various ports? As any seasoned traveler will tell you, some places are pretty well set up for tourists with disabilities. Others, well, be ready to assess your level of comfort for uncharted adventure. • Make sure your passport is up to date; keep a photo copy of it in your luggage. • When determining the type and length of cruise make sure you have more then enough medical supplies and make a list of all your medications. • Think about purchasing travel insurance. High seas travel weather can be unpre dictable. • Be a self-advocate; when you need help or something is not working while on board, report it. • Always pack a rain coat, extra sunblock and an extra charger for your phone or camera. • Finally, keep that good attitude. Travel is not always as smooth as you hope, but if you make the best possible plans, and enlist the help of veteran cruisers who use wheelchairs and scooters, you can pre vent most problems in the first place. Ever hear the expression “The most important thing to pack for a trip is a smile?” Trust me, it’s true. Bon voyage!
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September/October 2015 - thehubsocal.com 19
scars
The Art of Imperfection By Carlana Stone
Each
of us has some part of ourselves from which it is impossible to escape. My scars are a symbol of my life’s journey – a symbol of survival. Scars signify both an opening (vulnerability) and a closure (healing).·Something has been broken but the problem has been fixed. I strive not to perceive my scars as an imperfection of my physical body, but merely as a symbol I embrace and celebrate. My scars are a critical part of my make-up. I display my scars as a symbol of beauty and pride – a piece of art. Like me.
ZEN STONES – the Path to Enlightenment Five stones. Five shapes, five elements (the five core members of Stone family). Each rock has its individual shape and each has a different name. The five Zen Stones symbolize BALANCE – harmony and soul.
LADYBUG As a child, some of my happiest memories were spent with my Paw-Paw in his tomato and strawberry garden. He would catch ladybugs and put them on my arm. They tickled. And I remember the laughter. After my Paw-Paw passed away, he came back as a ladybug, perched on the walls of my Nanny’s hospice room – to guide her to meet him on the other side. Every time I see a ladybug, I’m reminded that Paw-Paw is here with me. In Ireland, the ladybug is said to Photo by Chris Benson
be a symbol of protection. In spite of its size, the ladybug appears to be fearless. The ladybug is a reminder of my need to release my fears and return to love.
fiery. The Ruby stands for unbridled love and fiery passion. The Star Ruby is rare and undiluted. A Precious Stone. My Daddy calls me “Precious.” My last name is Stone.
THE EDELWEISS
A STAR
The Edelweiss Flower is unconstrained, free, resilient, fierce, unstoppable and courageous. Edelweiss grows out from between rocks on the cliffs of the Swiss Alps. The Edelweiss is a member (endangered) of the sunflower family and grows looking upward to the sun.
A Star is a guide; it provides light.
RAYS OF LIGHT There is always light – we just need to steer ourselves toward it.
SAND DOLLAR We must handle the sand dollar with gentle love and care. Like we handle relationships. When they are broken, at first glance, we may just see only rubble. But, when you sift through the rubble, we find the gift. Inside every sand dollar there are actually five white doves; when the shell is broken open, the doves are released and free to spread peace and happiness throughout the land.
DOVE The dove is a messenger o f l ove a n d p e a ce. F i ve doves equals the five things we search for in life: Love. Friendship. Happiness. Health. Abundance.
STAR RUBY Ruby is my Momma’s name. The Ruby’s color is warm and
OPEN EYE – THIRD EYE A reminder that I must always strive to keep my eyes open to the signs and omens around me. The third eye is the reminder to remain present. It is a symbol of deep inner connection, pulling me into the naked and vulnerable now, which involves both profound joy and profound sadness simultaneously. Open eyes = open mind = open to all possibilities.
GREEN EYE My Daddy has green eyes; I have green eyes. Green-eyed people know our possibilities. We have many characteristics of a faithful friend. We long for the touch of another; we are passionate and have long lasting relationships.
ANTAHKARANA – The Rainbow Bridge The Antahkarana represents the link to the soul and our higher conscious, the journey through my inner-self in which I explore my connection to others and the importance of my spiritual development through involved experience. I strive for more heightened awareness of myself ... and others. The Antahkarana symbol is uplifting and healing.
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September/October 2015 - thehubsocal.com 21
ROB PARSONS THE ORIGINAL
CHAIR SLAYER by ALLEN RUCKER Photos by Luke Munnell
Master tire-smoker Rob Parsons schools Ben Connolly in the art of the drift.
Meet
Rob Parsons. He’s a 2 9 -ye a r - o l d f ro m Lethbridge, Canada, now living in Long Beach, and he’s on his way to becoming a pro drifter. If you’ve seen The Fast and the Furious: Tokyo Drift, you know what drifting is. It’s a manner of sliding a car through an impossibly tight corner—traction is gone in the rear wheels, as the front wheels are turned opposite to the turn. I drove deep into in the desert outside of LA one recent Saturday to watch a drifting competition at Willow Springs Raceway. Dozens of adrenaline junkies pulled cars out of trailers and started tinkering. The tire burning was on. It was loud, motor-oil grimy, dusty, and exciting as hell. Drifting reportedly got started in Japan in the ’60s and ’70s and first came to America in 1996, at the very track I went to: Willow Springs. It soon went global. Besides the professional level in America—called Formula D, with a roster of 80 or so full-time drivers—there are competitive leagues in China, New Zealand, Europe and Greece, all judged on speed, the angle of your turns and pure showmanship. If your tires smoke up the skies and the crowd hoots and hollers at your maneuvers, you get points. Parsons unloaded his tricked out, 600-horsepower Nissan, transferred to the racing seat, and strapped in. The Willow Springs track features four or five hard turns. Parsons revved up his heavily
modified rear-wheel-drive coupe and took off like a house afire. Entering the first turn at speeds up to 100 miles an hour, he fishtailed into the drift—spin out, you lose; hit the wall, you lose—the back tires have to get as close to the edge of the track or wall as possible. This is repeated through each turn. A run takes a heart pounding two to three minutes. Drifting is hard on tires. In his first two qualifying runs that Saturday, Parsons reduced his tires to the surface of a bowling ball. After two races, you’re out a couple of hundred bucks and you might lose another set before the night is over. In the finals competition, two cars race side by side. One is the lead car, the other the chaser. This doubles the amount of skill and effort to win and creates even more noise, dust and close calls. On his third preliminary race, Parsons qualified for the finals. He was almost beside himself with joy. This was the first time he had qualified for a sanctioned race. If he could win the finals he was one step away from qualifying for the equivalent of the drifting minor leagues, what they call Pro2. Succeeding in Pro2 might mean a trip to the Big Show, Formula D. Becoming a pro means traveling the world, drifting in front of crowds of thousands, and making some serious money. And if you ask Parsons why he drifts instead of big-time oval-track racing, he’ll tell you that it’s more fun, a bigger rush and demands a higher level of micro-proficient driving skill. “It’s like flying a fighter jet,” he says. Alas, Parsons’ fuel pump blew up on him and prevented him from racing in the finals, but like every other racer on the track that day, he dreams about the big time. The only difference is that Parsons is a T-5 paraplegic, the only one of his kind in the U.S. and probably the whole drifting world.
A Drifter’s Story Growing up in Canada, Parsons started September/October 2015 - thehubsocal.com 23
He wanted to use drifting as both a unique visceral experience and motivator to other people living with paralysis.
racing BMX motorbikes when he was 16 years old, riding in skate parks and dirt jump events. “I never really enjoyed standard sports like baseball and hockey,” he says. “I really liked being able to jump and do tricks on bikes. I was lucky enough to have a place where I could build dirt jumps and ramps to practice on. I got real good pretty quickly and started entering competitions and riding with my friends every day.” By age 25, he had become a skillful biker. While riding hard on the up-and-down dirt track at Temple Hill, Alberta, he made a routine jumping error—he was “short on a step-up”—and went flying into a fence. It was a murderous crash. “I ditched the bike and hit the ground at full speed. Two kids called 911. I was in shock, but still conscious. I knew immediately that I was paralyzed.” By the time ER doctors could add the damage, he had broken both legs, punctured both lungs and completely smashed his spinal cord. When told of his injuries, Parsons remembers, he “felt dead inside.” After six months in the hospital, Parsons knew what to do. He had one card to play—a defining passion that few of us possess at 25: He wanted to race. As Parsons explains, “When I broke my back, I knew I wasn’t going to walk again, so it was easy for me to accept what had happened. I started looking at sports beyond dirt biking that I could easily get back into. I thought, ‘There has to be a product or program out there that helps other guys who’ve been hurt, something that’s affordable and pretty straightforward to attend or purchase.’ Well, to my disbelief, there was neither.” Before his injury, Parsons had acquired skills as a mechanic—and a 1991 “fast back” Nissan 180SX (in America, called a 24 thehubsocal.com - September/October 2015
240SX) directly from Japan. It had right side steering, but that didn’t bother Parsons. He figured drifting would be a good sport for a wheelchair guy to pursue, so his problem was trying to turn a sporty car into a mean and lean drifting car, and then into a drifting car a guy could drive using hand controls, under extreme racing conditions. He stripped the car to the bone and added a new motor, a new transmission, hacked off most of the front and back, and added a few protective “bash bars” on the front and rear, behind the bumpers. He began with standard hand controls, but those didn’t help him with controlling the gears or the clutch. The key to drifting is fast and accurate clutch control; he needed a way to manipulate the clutch by hand with same split-second timing as hitting a clutch pedal with one’s foot. In car-enthusiast language, Parsons describes his adaptation: “I devised a motorcycle-style lever and thumb buttons that electro-hydraulically actuate a twin-disc clutch and H-pattern gearbox.” With no prototype to work from, he invented this whole mechanism from scratch. If you saw him burning tires around those hairpin turns, you would have no idea that he was paralyzed or what he went through to get there. With the help of gearhead friends, it took Parsons a year and a half to build all of this into a slick-drifting machine. The expenses were sizable—as Parsons says, in racing, “you spend two million to make one million.” Parsons went trolling for sponsors to fund the building of a car that had never existed before nor been tested in combat. “As soon as the car started running,” he says, “we started changing a lot of minds.” His sales pitch must have been convincing,
because in the end, 30 companies signed on, from specialty parts makers to a realtor and a homebuilder. Parsons really had two things in mind while fashioning this one-of-a-kind racecar. One, he was out to get his pro ranking and race with the best. Two, and maybe even closer to his heart, he wanted to use drifting as both a unique visceral experience and motivator to other people living with paralysis. “Challenging myself to build the car, inventing a working system and showing people I can make it happen was a motivator to get the car finished,” says Parsons, “but the real reason why I did this is more than just some personal sense of accomplishment. I wanted to help people. There was a need for this and I could tell that very early on into the project.” Newly injured and lying in the hospital bed, he came up with the idea for
Chairslayers, a foundation dedicated to teaching others to drift. “As soon as I got behind the wheel for the first time,” he says, “I knew I could not only give people an adrenaline rush again, but I could save people’s lives.” In Parsons’ view, it’s hard to feel down and depressed when you’re behind the wheel of a car going 50-100 mph and spinning out your back tires like Vin Diesel does. “It’s both a fun and empowering activity…a race car is the perfect tool for this because it challenges you on many levels and forces you to problem solve, learn new skills and be creative.” Chairslayers recently began instructional driving clinics where stone-cold amateurs in chairs get behind the wheel of a highperformance car and learn a little about hand-controlled drifting. In his first such clinic, Parsons taught the gears and pedals to a 17-year-old para from England named
Ben Connolly. It was a test for both of them—a test for Ben’s driving skills, and a test to see if others could easily pick up Parsons’ system. After the smoke cloud of donuts and figure eights subsided, both came away smiling. The whole experience was taped and aired on the Discovery Channel’s Daily Planet. Says Ben: “It was the best day of my life.” The next big outing for the Chairslayers drifting clinic will be in mid-September at an event called “BoostFest” at the Wild Horse Motorsports Park in Chandler, Arizona. Parsons will be teaching the rudiments of the sport to a group of paralyzed Iraqi/ Afghan vets, by way of the veterans’ support organization, Phoenix Soldiers. Back to Willow Springs. Because of the blown fuel pump, Parsons came away empty-handed from that race, but thoroughly psyched in qualifying in only
his second competition in the circuit called the Top Drift Pro/Am. He has one more race in this season’s series to try again. Even if he wins, he won’t immediately qualify for Pro2—he needs more competitive experience and probably a few more tweaks to his Nissan to move up—but he is patient and determined, the same attributes that got him from broken spine to the track in four years. He says it will be 2017 before he will have the seasoning needed to compete in the pros. When drifting comes to your town—and it will get there soon—check it out. Be sure to look for the smoking, green-blue Nissan with the neon green wheels and listen for the name of the original, the one and only chairslayer himself: Rob Parsons.
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For more information, visit chairslayer.com. September/October 2015 - thehubsocal.com 25
26 thehubsocal.com - July 2015
gail williamson Changing Hollywood’s Perception of Disability. By David Radcliff
Gail and son Blair
Photo by Michael Hansel
W
hen her son, Blair, was born with Down syndrome in 1979, Gail Williamson did not suspect his condition would come to shape her own professional future. She did, however, recognize she could “absolutely silence a whole restaurant, just by carrying Blair on [her] hip.” It was a regular, and sobering, occurrence. “I don’t think people were mean or bad,” Williamson says, “but they were uninformed and uneducated. They didn’t have an opportunity to know someone with Down syndrome—and there weren’t that many kids [with disabilities] on school campuses.” In the decades that have followed those quiet restaurant visits, Williamson has worked to puncture the silence surrounding disability in daily life and in the media. As a diversity agent for Los Angeles talent agency Kazarian/Measures/Ruskin & Associates (KMR), and previously as a key figure within the California Governor’s Committee for the Employment of People with Disabilities, Williamson has launched and nurtured the careers of countless tal-
ented actors with disabilities—all while subverting the expectations of the audiences and industry she serves. “Last year, NCIS: New Orleans called me up and wanted a double-leg amputee, a guy, to play a wounded vet. I said, ‘Well, I’ve got some single-leg guys—but what about using a woman? Why couldn’t a woman be a veteran?’ They ended up casting a woman. I did the bait-and-switch with them.” In a Hollywood climate that typically recognizes diversity as an issue exclusive to race, ethnicity and sexuality, Williamson has championed a broader and more inclusive view of creative talent. It’s a view that was, at least in part, sparked by an innocent conversation with Blair, when he was 10 years old. “Blair said to me, ‘My Down syndrome is going to go away. Daddy’s went away, and my brother’s went away,’” Williamson says. “Blair was under the impression that all males began with Down syndrome and that it went away after awhile. I realized I wasn’t giving him any adult role models— individuals with Down syndrome who had grown up. He didn’t have any adult life in mind for himself.” Williamson credits the ABC drama Life Goes On (which premiered in 1989 and featured actor Chris Burke as Corky Thatcher, a 24-year-old with Down syndrome) as deeply influential for the Williamson family. Watching the series every week with his older brother, Tim, Blair came to recognize an adult life full of possibility, education and friendship—a potential model for his own. Meanwhile, Blair’s mother recognized the power of the media to represent, service and champion an often forgotten demographic. “With Corky appearing on TV every week and in commercials during the week, even people who didn’t regularly watch the show became aware, for the first time, that you could have a conversation with someone like Blair. I saw the power of that show, and I heard parents who were having babies with Down syndrome weren’t being told to put the babies in institutions—they
were being told their babies could grow up to be like Corky.” What would become Williamson’s life work as an advocate for diversity began in 1991, when Blair, a Special Olympics athlete, was tapped to star in a commercial for Proctor & Gamble. The spot required the young runner to race up and down a hill in the Santa Monica Mountains. Blair, a natural performer, was game for all of it, and his mother stood proudly nearby. It was then that Williamson had yet another pivotal conversation—this time with a young, expectant mother who raised the topic of abortion. “It suddenly hit me,” Williamson says. “This [commercial] is bigger than Blair having fun and succeeding. It’s bigger than just being on a set. I thought of an expectant mother who has a baby [with Down syndrome]. She’s scared. Now this commercial comes on, and she sees a happy kid trying to run further than he’s ever run before. How is that going to impact her life?” Today, and thanks in no small part to his mother’s efforts, Blair’s credits as an actor include roles on CSI, Scrubs, ER, and Nip/Tuck. He may just have become one of those small-screen role models he, and others with Down syndrome, sought decades ago. Other members of Williamson’s impressive client list include American Horror Story’s Jamie Brewer and Glee’s Lauren Potter. Williamson says she even tracked down a baby with Down syndrome to be born on-screen during an episode of Shameless. But even amidst her considerable successes, Williamson says disability representation in media has been “lapped” by other diversity groups, many of which have members actively working within the industry in positions of authority. For now, it would seem, the pursuit of disability inclusion continues. “I don’t think it will happen in my lifetime,” Williamson says. “But I hope to find other people who have the passion to conquer this goal when I retire.”
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September/October 2015 - thehubsocal.com 27
GEAR Gallery New Products for Fun and Function
Hands Free Gamer Alert This rig is for C1-C4 quads who have good movement of the head. The Head Gamer is an analog control unit that’s set up for rapid fire and deadly accurate sip n puff control. Fully programmable. Eight switches, 4 chin buttons and micro chin joystick. Comes with robo-mount for chair or bedframe. $1,945; see full gamer catalog at gimpgear.us
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go. stop, go again, play
Access
Your Home Gym It’s a versatile 4.4 lb. home gym -- a lightweight fitness device that employs two-way rubber cords to create more than a 1,000 exercises, says the manufacturer. They call it Kefty, for Kinesthetic Exerciser For Transforming Yourself. It’s easy to use for anyone, including wheelchair folks with at least minimal grip. Big tubes hook under footrests or behind chair; they are easy to hang on to for military press, chest press, ab crunches and much more. Made in America, $129. Kefty.com
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Push Less, Save Shoulders Smart Drive is a small, portable power wheel that attaches to the back of a manual wheelchair. It’s a battery-powered, Medicare approved cruise control that helps with hills, ramps and long pushes, reducing the strain on the shoulders. The newest model, the MX2, integrates the battery into the drive unit and has no wires – comes with a wrist band Bluetooth controller. List $6450; max-mobility.com 28 thehubsocal.com - September/October 2015
Packable Hand Controls When you’re on the road away from home you may need to drive a car that isn’t set up with permanent hand controls. The AZ-1 hand control system does the trick, as long as you have good hand function. These controls require no tools to install; throttle is a thumb control, brakes are activated with a left hand handle. They’re adjustable and light weight and pack up easily. $349 retail, colourswheelchair.com
OUTTAKES Gallery Let’em Roll Fundraiser for the Triumph Foundation Hyatt Regency, Valencia 7/18/15 photos by Andrew Angulo, Disabled Life Media.
July 17 - Aug 2, 2015, Photography By: Paul & Nancy Grant
Kirsten Skinner with Steve Heimberg, MD, Triumph Foundation supporter
Andrew Skinner
Michael Hansel, always behind the camera
Special Olympics World Games Los Angeles,
Mike Box and Will Matay
Wendy Sipple and Terry Carroll, Publishers of The HUB SoCal
Hobal Grajeda and Bobby Rohan, Emcee Auti Angel
Marisa Hamamoto and Russell Burke Lily-J, Auti Angel and Shanae
Auti Angel and DJ Stretch Boogie
Andrew Angulo and Rebekah Lawrence
30 thehubsocal.com - September/October 2015
Andrew Angulo and ReRay Pizarro (is he counting bekah cards?!) Lawrence
NOT JUST A PRETTY BASE.
The F5 Corpus goes beyond good looks to stretch the boundries of logic. 速
How can a smaller footprint offer greater stability, or a lower seat-to-floor height allow you to reach higher? How can faster still be more powerful at low speeds, or a completely rigid frame offer a stable, comfortable ride? Experience it at permobil.com