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theHUB THE CENTER OF THINGS

NOVEMBER/DECEMBER 2015

Southern California

PAUL LU:

SCI RESEARCH IS PERSONAL •ALANNA’S EQUESTRIAN QUEST •HORMONAL HARMONY thehubsocal.com


www.ihausa.org

HYPERBARIC OXYGEN THERAPY HAVE SHOWN BENEFITS FOR:

Spinal Cord Injury • Autism Cerebral Palsy • MS • Diabetes Cancer • Lyme • Near Drowning Stroke • Stem Cells • Chronic Pain Sports Injuries • Toxicity • PTSD Parkinson’s • Alzheimer’s

to find our more about hyperbarics or locate a clinic near you, please call 213.880.0186 or email skenitz@ihausa.org


theHUB AT THE CENTER OF EVERYTHING

of Southern California

November/December 2015 issue

FEATURES

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22

Pg. 18 A Scientist’s Motivation For Paul Lu, It’s Personal Pg. 22 A Paralympic Quest Ride On, Alanna Flax-Clark

DEPARTMENTS Pg. 4 Editor’s Note Sam Maddox Pg. 8 Contributors Meet the Hub Team Pg. 10 News The SoCal Beat Pg. 11 Calendar Upcoming Activities Pg. 12 Charity Spotlight Challenged Athletes Foundation

HORSE AND RIDER: AN OLYMPIC QUEST

MEET PAUL LU, NEUROSCIENTIST

Alanna Flax-Clark is a horsewoman but not a cowgirl. She started out on horses as therapy and then fell in love with the graceful, powerful animals. Practiced in the art of dressage, Alanna is taking her passion to a higher level, seeking a spot on the para-dressage team at next year’s Paralympics in Rio.

Pg. 14 Health is Wealth Hormone Harmony Pg. 16 Advocacy The FeFes Take Charge Pg. 25 Getting Personal Skills for the Date-Seeker Pg. 27 Gear Gallery Tools and Products Pg. 28 Media Matters Becoming Bulletproof Pg. 30 Outtakes Triumph Foundation 4 thehubsocal.com - November/December 2015

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The progress toward restoring function after spinal cord injury is slow but sure. Paul Lu, who lives with paralysis, has a major dog in this hunt. He’s dedicated his career at UC San Diego to figuring out ways to rewire the damaged spinal cord – using stem cells, or cells from the body that become just like stem cells.

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theHUB AT THE CENTER OF EVERYTHING

EDITOR’S NOTE IT’S PERSONAL

Southern California

bulletproof:nofear ELEVEN YEARS AGO, here in California, 59 percent of voters approved $3 billion to create the California Institute for Regenerative Medicine (CIRM). The idea was to accelerate stem cell research toward new treatments. Back then, what with all the promotional spin from patient advocates, including Christopher Reeve, you’d have thought by now we might have licked cancer, Alzheimer’s and paralysis— don’t you just squirt those magic cells from nature’s toolbox into the body and, presto, there’s the cure? California has indeed become the center of the universe for stem cell research and CIRM can cite numerous human trials moving forward in several disease areas, but it has not been so easy to get treatments into the mainstream. Paul Lu, who has been funded in part by CIRM, knows firsthand that stem cells are tricky; they come with ethical baggage if sourced from embryos or fetal tissue. When transplanted, they don’t always like to stay where you put them. And they can grow too much, forming tumors. Lu, at UC San Diego, has been determined to get stem cells to grow in the spinal cord. His motivation is that of any scientist: He wants to take his research to the clinic. But for Lu, it’s more than that. He hopes his science

will also lead to a treatment for himself; he was spinal cord injured 19 years ago and can imagine a day when his broken nerves are restored. In this issue, you’ll meet the hard-working, mildmannered scientist, follow his path from botany to neuroscience, and see just how far he’s taken stem cells toward his goal of functional recovery. There are several other characters you’ll meet in this edition of The Hub. Alanna Flax-Clark is mastering the art of dressage—that’s with the grace and power of horses, of course—and she hopes to compete in the next Paralympics in Rio. AJ Murray is the center of gravity in the new documentary Becoming Bulletproof, which is screening November 12 at the Museum of Tolerance. AJ won an award at the recent Media Access Awards in Los Angeles—he’s pure of heart and fearless; you can’t help but root for him to be taken seriously as an actor. There’s much more, too. Don’t miss the savvy advice on dating from therapist Linda Mona; take heed of several tips on keeping your hormones in sync from Boris Del Cid; and for women, check out a great new resource on taking charge of your own reproductive health care. —Sam Maddox

Volume 1, Number 5

• 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 Chris Benson, Candace Cable, Boris del Cid, Michael Hansel, Linda Mona, David Radcliff, Ellen Stohl

• 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 Boris del Cid

Chris Benson

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—blogger for the Reeve Foundation—joined “the club” after a spinal cord injury in 1975; she briefly went down the path of pain and anger, then began a legendary 27year career as an elite athlete,

Candace Cable

David Radcliff

winning nine gold medals in the Paralympics in both winter and summer sports.

Michael Hansel

Dr. Linda Mona

ity-related event in the LA area.

Boris del Cid, writer, is a chiropractor in Orange County, injured nine years ago in a motorcycle accident. He was born and raised in Panama City, Panama, and has lived in Southern California since 1980.

Dr. Linda Mona is a licensed psychologist and is the president of Inclusivity Clinical Consulting Services (ICCS). She specializes in providing psychotherapy, education and training to people with disabilities in the Southern California area.

Michael Hansel, who was born with osteogenesis imperfecta, has directed both for the stage and film. Photography is a passion; he never misses a disabil-

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

15 years selling accessible vehicles and lifts 19 Years in a wheelchair

WHY WOULD YOU BUY FROM ANYONE ELSE?

“I’ve sold hundreds of vehicles to best fit my clients lifestyle, body and disability.”

You don’t have to re-invent the wheel. Call me first, I get it. Julienne Dallara 818 441-8948 jdallara@abilities.com

Ellen Stohl

disability and media. A graduate of USC and of UCLA, he is currently a finalist for the Sundance Episodic Story Lab and is a writing instructor at the New York Film Academy. Ellen Stohl, spinal cord injured in 1982 and a Playboy model in 1987, sometimes describes herself as “Amazon, Barbie Cripple.” She is a writer, educator and 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.”


Photo. by: Michael Hansel

NEWS NOTES ETC. THE SOCAL BEAT

Peter Farrelly and A.J. Murray

DIVERSITY AND INCLUSION AWARDED

JACK’S BACK IN HOCKEY

F

our years ago, Jack Jablonski, then a 16-year-old high school sophomore from Minnesota, was paralyzed from the chest down after he took a hit during a hockey game. Jack, who is now enrolled in USC to study journalism, is not taking to the ice anymore, but hockey is still a big part of his life. He just landed a sweet gig as an intern on the staff of the LA Kings hockey team, where he distributes statistics, transcribes quotes and records interviews with NHL players. “It’s super fun,” says Jablonski “It’s nice being back around the hockey rink, especially in an NHL atmosphere.” Meanwhile, Jack helps run the Believe in Miracles Foundation, which supports spinal cord injury recovery. bel13vefoundation.org

Suicide Legalized, Fight Continues

C

alifornia Governor Jerry Brown signed a law last month legalizing assisted suicide. The state is now the fourth in the nation wherein a person can have his or her doctor provide life-ending services. Is this a good thing? Brown said he struggled with the legislation, but decided he’d want such an option if it came down to him making the choice. He said the law had adequate safeguards. Not so fast, say a wide coalition of activists. For people with disabilities who already depend on an un-

derfunded, highly dysfunctional system of health and social service programs, the thinking goes like this: If it’s cheaper and easier to help us die than give us support

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THE MEDIA ACCESS AWARDS (MAA) recognize and celebrate television and movie depictions of disability that are accurate, inclusive and multifaceted. Recently, at its annual press breakfast in Los Angeles, the MAA awarded actor A.J. Murray for being the “heart and soul” of the documentary Becoming Bulletproof (see page 28 for a review of this new release). Said A.J., who has always dreamed of being an actor,

“This role has changed my life. A lot. We’re here to celebrate inclusion. For too long we have been invisible in pop culture. This has to change.” This year’s awards also recognized the work of film director Peter Farrelly (Dumb and Dumber, There’s Something About Mary, The Ringer), TV producer Betsy Beers (Grey’s Anatomy and Scandal) and actor Mat Fraser (American Horror Story: Freak Show). mediaaccessawards.com

to live, what do you think the state would choose? Oregon, which pioneered the concept, intended the law to help people in terminal agony and pain. Turns out most who use legal suicide there are

mainly depressed. Are they being offered appropriate counseling? Advocates note that legalizing assisted suicide sends the message that feeling like a burden is an acceptable reason for suicide. The slippery slope seems obvious: Subtle or even overt coercion toward death will surely be more cost-effective than life-affirming care. Activists are circulating a ballot petition to overturn the assisted suicide law in California; sponsors must collect 365,880 signatures of registered state voters by January 4, 2016.


calendar UPCOMING EVENTS OF NOTE

December 5-6 Bill and Julie Duncan Memorial Wheelchair Basketball Tournament, San Jose State University. Email pjackson@ te.com for more info. December 11-13 Mammoth Mountain Ski Trip, The Achievers is the Orange County chapter of Disabled Sports USA. The program believes that abilities far outweigh disabilities, and that recreation can be the catalyst for a better

Have an event you want to tell everyone about? Visit the hubsocal.com and enter it into easy-to-use system!

quality of life. theachievers.org January 28-31 Indian Wells Tennis Garden Wheelchair Championships, a major sanctioned USTA event with $12,500 in prize money. 2bouncetennis.org

SAVE THE DATE! February 5-7, 2016 ABILITIES EXPO - LOS ANGELES. The Los Angeles Abilities Expo showcases a wide range of events that not only entertain, they also give attendees the opportunity to try new things, expand interests and discover ways to be more involved in the local Los Angeles area. abilities.com

December 3, 5-10 pm. EAT FOR A CAUSE! Come join Triumph Foundation at Route 66 Bar & Grill for dinner to support the Triumph Foundation. A portion of the proceeds go to the Triumph Foundation to support their Christmas outreach. Call Andrew at the Triumph Foundation at 661-803-3700.

December 10 HOLIDAY HARBOR CRUISE with Casa Colina Outdoor Adventures, Los Alamitos Bay at Long Beach. Cruise the bay in electric Duffy boats. casacolina.org November/December 2015 - thehubsocal.com 11


CHARITY SPOTLIGHT CHALLENGED ATHLETES FOUNDATION BY ELLEN STOHL

back in the game

James Sa

Brad Snyder

As a young child, Scout Bassett lost her right leg below the knee. After being found living on the streets of China, she was placed in an orphanage where she spent the next few years of her young life. At the age of seven, she was adopted and taken to live in America. Unsure and afraid, she tried to adjust to a new culture and life with a permanent disability. It wasn’t easy. Four years ago, James Sa—a college student, musician and athlete—was paralyzed from the chest down after diving into a mud pit while completing in the Michigan Warrior Dash, “a mud crawling, fire leaping, extreme run from hell.” James was a serious competitor, but after that landing-gone-awry, learning to navigate life on two wheels was a difficult adjustment. Brad Snyder was serving in Afghanistan in 2011 when an

Scout Bassett

improvised explosive device (IED) permanently blinded and injured him. At the hospital, he was told his injuries would heal but his sight would not. These are three stories, among countless others, about people whose lives have been changed dramatically by disability. Scout, James and Brad were overwhelmed and uncertain—until they found the right support. Enter the Challenged Athletes Foundation (CAF), an organization that started in Southern California as a mission to help one

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man—Jim MacLaren, a recordsetting Ironman triathlete whose athletic success came after losing his left leg in a motorcycle accident and inspired millions. When a second accident left him paralyzed, it took more than determination to get Jim back in the game. He needed personal support and the right equipment.

THE ORIGINS OF CAF To meet the challenge, Jeffrey Essakow, Bob Babbitt and Rick Kozlowski organized the first San Diego Triathlon Chal-

lenge (SDTC) to help Jim buy an adaptive van and regain his independence. The 1994 race raised nearly $50,000, twice what they had expected. The money was enough to purchase a van for Jim and lay the groundwork for the CAF, which was officially established in 1997 as a 501(c)(3) nonprofit dedicated to supporting people with physical challenges by helping them pursue active lifestyles through physical fitness and competitive athletics. “CAF believes that involvement in sports at any level increases self-esteem, encourages independence and enhances quality of life.” The CAF concept has been hugely successful. The nonprofit has raised more than $67 million to fulfill over 11,000 funding requests from challenged athletes in all 50 states (including Scout, James and Brad) and dozens of countries around the world.


SCOUT ON THE RUN When Scout was 14, she received on Ossur running leg through a CAF grant. She shares her enthusiasm: “My breakthrough came in 2002 when a single piece of equipment changed me from the inside out. I ran for the first time at 14 years old, and I haven’t stopped since. Running became a healing power in my life and transformed me from a painfully shy recluse to a young woman with confidence, passion and drive.” Scout went on to earn a degree in communications from UCLA and is currently a competitive U.S. Paralympics track sprinter, three-time U.S. champion in the 100-meter sprint, and motivational speaker. She believes everyone faces a lot of “no’s” in life but it only takes one “yes.” “If you have a dream or a goal, apply for a CAF Access for Athletes grant and

make it happen! Perhaps your dream is to run around with your kids or maybe you want to be the next Paralympics champion—whatever your vision is, it all starts at CAF. Let nothing stop you from doing what you love and loving what you do.”

RUGBY JAMES One of the first people San Diego resident James Sa met after his mishap in the mud pit was Jeff Odom, an experienced and accomplished wheelchair athlete and mentor for CAF. Jeff let James try his rugby chair at a practice and suddenly felt free. “I had no idea I could be strong and fast again. I just wanted to go to a rugby practice to take my mind off being crippled.” Once James realized that the right equipment would give him the ability to excel in his sport and be competitive, he jumped at Jeff’s offer to mentor him

through the CAF program, Project N.Ex.T., which would help James get a rugby chair of his own. James used that chair to earn a spot on the San Diego Sharp Edge wheelchair rugby team, and then parlayed his writing skills into a full-time job with CAF as a grant and content writer for their Business Development Office. James, a self-proclaimed comic book nerd, also speaks to a variety of organizations, schools and businesses about CAF and their ability to positively impact adaptive athletes.

BRAD GOES GOLD U.S. Navy Lieutenant Brad Snyder always maintained an optimistic attitude, so when he won two gold medals and a silver at the London 2012 Paralympic Games less than a year after losing his eyesight, it was no wonder CAF chose

him as the featured athlete for Veterans Day 2014. His adjustment to becoming blind and his attitude about life make him the perfect icon for Operation Rebound, a CAF program designed to help injured troops and first responders to harness the healing power of sport by funding equipment, training and travel expenses. CAF has several programs that are designed to help people with physical challenges get out, get active and live fully. Their goal is to educate individuals with disabilities about the resources and opportunities available to them while also educating the community at large about life with a disability, changing perceptions about disability, and helping those with physical disabilities realize and reach for their dreams.

For more information, visit challengedathletes.org.

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HEALTH IS WEALTH FINDING BALANCE IN YOUR BODY BY DR. BORIS E. DEL CID, DC

hormone harmony STRESS IS DAMAGING On the subject of stress, there are three hormones produced by the adrenal glands: epinephrine (adrenaline), norepinephrine and cortisol (the primary stress hormone). The latter can cause chronic stress problems with health consequences that affect almost all the body’s processes. Overexposure to cortisol can cause sleeping problems, depression/ anxiety, weight gain, concentration and memory problems, digestive disorders and acne. Although you may not be able to completely eliminate stress, it can be mitigated by diet, exercise (the most effective) and mental relaxation. Working out releases neurotransmitters such as serotonin and dopamine, which helps your mood, immune system, fights depression and improves long-term memory. For best results, combine cardiovascular and resistance training. Sex, massage and laughter also help release these neurotransmitters, so have at it! Laughing releases endorphins, which is a euphoric chemical that helps fight depression/ anxiety and pain perception. There’s also a bounty of calming foods that help fight stress—oranges, berries, oatmeal, spinach, beans, garlic, walnuts, cashews, flaxseed, avocados, asparagus, seafood, lean grass-fed beef, salmon, dark chocolate, green and black tea are all good choices. Whole foods like lean proteins, fresh fruits, vegetables, legumes, nuts and plenty of water give the body proper nutrition and can help improve functions of the endocrine system.

Melatonin, the hormone that regulates sleeping and waking patterns (our circadian rhythm), is secreted by the pineal gland. In order to maintain a healthy circadian rhythm, our body must produce adequate levels of this hormone. The best way to induce melatonin production is by natural stimulus, as synthetic melatonin has not yielded impressive results. Natural melatonin boosting foods include turkey, pineapples, bananas, oranges, tomatoes, sweet corn, rice, barley and oats. You can also enhance sleeping hormone production by adopting these recommendations:

THE ENDOCRINE SYSTEM is a collection of glands that secrete hormones directly into the bloodstream and affect almost every cell in the body. In the advent of a spinal cord injury (SCI), there’s disruption of much more than nerve function. Our endocrine system, which works closely with the nervous system, gets whacked out of balance, too. But can it be “rebalanced”? What can we do to achieve hormone harmony? Rebalancing our hormones may not be completely achievable in a body dealing with paralysis; however, with adequate sleep, stress control, a healthy diet and regular exercise, there are ways to maximize endocrine potential.

SLEEP IS MEDICINE Sleep—the quality and quantity—can be the most impactful factor to the proper function of the endocrine system. Experts recommend at least six hours of uninterrupted sleep, yet the average adult needs seven and a half to eight hours per night. Chronic sleep deprivation can cause a lot of health problems—from memory and concentration difficulties to weight gain, depression/ anxiety, cardiovascular disease, decreased sex drive, release of cortisol (stress hormone) and decreased release of human growth hormone (HGH)—and may be the most significant cause of glandular imbalance.

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• Get active: Exercise helps you get tired, promotes deep sleep and HGH production. • Meditate: Relaxation is an important part of inducing good sleeping patterns, as it decreases stressful brain activity. • Aromatherapy: Lavender oil promotes relaxation and helps you fall asleep. • Lights out: Shut off all the lights in your bedroom, as melatonin production is interrupted by light.

TESTOSTERONE For males with SCIs, muscle mass and strength can become a problem. The use of hormonereplacement therapy in the form of testosterone can help; benefits include decreased risk of cardiovascular disease, increased muscle mass, better exercise capacity, higher metabolic rate and improved insulin sensitivity. On the other hand, side effects may include acne, fluid retention, enlargement of the prostate gland, increased risk of developing prostate cancer, enlarged breast tissue and increased risk of blood clots. While there appears to be no significant sexual hormonal dysfunctions in women with SCI, studies have shown increased severity of menopausal symptoms such as hot flashes, bladder and bowel dysfunction, and sexual function abnormalities (decreased libido and lubrication) in the presence of reduced estrogen production. In conclusion, the endocrine system is a delicate and complex one. Have your health care provider check your blood chemistry periodically, and maintain hormonal harmony by getting plenty of sleep, minimizing stress levels, eating a healthy diet and exercising regularly.


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ADVOCACY WOMEN’S REPRODUCTIVE HEALTH 101 BY CANDACE CABLE

it takes a village KNOW YOUR RIGHTS! There’s useful information about how the Americans with Disabilities Act protects the reproductive rights of women with disabilities and requires medical professionals to fully accommodate with dignity. Assistance can take the form of adjustable height examination tables or a trained team that can lift someone on to a table; it can also mean assistance undressing and dressing, or audio versions of written information so that women with disabilities can access reproductive health services just as any woman without a disability can. Because disabled women are at a higher risk for sexual violence, this issue is addressed fully and openly, aiming to reduce the shame and guilt that accompanies it. There are also numerous resources and references throughout the book to support women with disabilities as they move forward in forming relationships with their health care providers and taking charge of their reproductive health and wellness.

For a free PDF download of ‘Take Charge!’ visit accessliving.org and search ‘Take Charge!’

Take Charge!

is a comprehensive 52-page guide and a project of the Chicago-based organization, Access Living. Take charge indeed—the guide has the absolute perfect tone of “we’re mad, we’re not going to take oppressive stereotyping any more, and we’re taking our sexuality and health back with knowledge and flare.” The flare is infused by the strong desire for inclusion by Empowered Fe Fes, an advocacy and peer support group for young disabled women in Chicago. Started by Susan Nussbaum, the group is now led by Fulani Thrasher, the women and girls’ community organizer for Access Living, and her team of seasoned health care navigators, community leaders and organizations. The Fe Fe village set out to crush the old stereotypes of “women with disabilities don’t have sex, don’t have babies and don’t become mothers, so why do they need reproductive health care?” The guide offers plenty of support to understand how reproductive rights and civil rights are necessary to help women determine and exercise the direction of their lives—including equal access to health care services and providers. The physical and emotional access required goes way beyond simply entering through an ADA-compliant door and into a waiting room; the guide gives clear and easy-to-use tools for

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self-advocating and confidence building—both important skills—so women with disabilities can create an open and honest conversation with their doctor or health care provider about what their unique identities and needs are and how to accommodate them. Traditional health care often sees disability as a condition that needs to be treated, while the guide approaches disability as a natural condition. “The guide is very holistic,” Thrasher says. “It looks at all the things that compose the environment for a person with a disability, and doesn’t look at health care as the elimination of disability.” Take Charge! also spells out, in detail, what a woman will experience during a variety of screenings, exams and tests, not only empowering her, but helping to dispel any myths, anxieties or fears surrounding an experience at the clinic or hospital. For example, the guide details what a mammogram is, what equipment is used and how it works, as well as how women should perform their own monthly selfexaminations. It also talks about what to expect at a gynecology appointment, discusses birth control and how to prevent sexually transmitted diseases, and even advises disabled women how to see a doctor without a parent or guardian present.


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SCI RESEARCH SCIENTIST PAUL LU ON FRONTLINES OF STEM CELLS AND REGENERATION BY SAM MADDOX PHOTOS BY CHRIS BENSON

P

aul Lu, a scientist at the Center for Neural Repair at the University of California, San Diego, focuses his work on repair of the injured spinal cord. His motivation is in many ways personal: Lu’s own spinal cord injury (SCI) drives him toward finding cures. “My goal is to solve the mysteries of spinal cord repair, for all of medicine, and also for myself,” says Lu. “It’s an exciting time in my field of work, and I have always believed that science will restore a meaningful degree of my lost function.” Lu’s recent work has demonstrated unprecedented growth of spinal cord nerves (axons) up and down the cords of injured animal models treated with fetal-derived stem cells. There is evidence of connectivity, though functional recovery has not been as robust as it might be. As Lu and his lab mates refine their techniques to assure both efficacy and safety of the stem cell treatments, they are quite bullish on their chances for success. “It’s a time of great hope,” Lu says. “We have new tools and new approaches. There’s a lot of work still to do, but the door is open to new developments.”

NEUROSCIENCE, BY ACCIDENT Lu didn’t pick neuroscience; it picked him. He is an expert in SCI regeneration but he started out studying plants, not animals. He came to the U.S. in 1990 to study biology at UC Davis. “I had been a teacher in my native China but things were opening 18 thehubsocal.com - November/December 2015

up for young people back then—closed doors were suddenly opened, and my country sent me to the U.S.” After getting his Ph.D. in molecular plant biology at Davis, Lu stayed on for a post-doctoral fellowship. His career was going according to plan, until he was in a car accident on a Christmas trip to Las Vegas in 1996. Lu was spinal cord injured; married with a son, he had no health benefits. Lu says he wanted to stay in academia but was discouraged that UC Davis didn’t offer him a full-time program. “I was about ready to give up. I had my ticket and was all set to go back to China [where] my brothers would have taken care of me.” Days before his flight back to China, he visited the Resource for Independent Living Center in Sacramento, 20 minutes up the road. “I told them, ‘I need a job, any job.’ The director asked me if I could type. ‘Of course, I told her, I’m a Ph.D.’ She hired me for a social work job, which I learned quickly, and for a few months I helped other people with disabilities find work and housing. Being able to work and knowing I could work was really important in regaining my confidence.” Social work as a career wasn’t quite right, however. Lu was a trained scientist and wanted to re-enter the field. Naturally, he began to explore the science of the spinal cord. He looked at the scientific literature to see who was doing SCI research. He recalls seeing the Miami Project, the Fred Gage Lab at the Salk Institute in San Diego, and the Mark Tuszynski Lab, also in San Diego. He wrote to each of the labs, told them he had a Ph.D. in biology and that he wanted to be involved somehow in SCI research. “I didn’t hear from them,

but one day Mark Tuszynski was in Davis to perform some animal surgeries. He called me and asked if I had time to meet. I told him my story and he said, ‘You deserve a chance to work,’ and offered me a postdoc position at UCSD.” Tuszynski recalls this first contact. “I remember an email from a man at UC Davis who had his Ph.D. in plant molecular biology. He said he had recently sustained a spinal cord injury and wanted to volunteer to be a research subject or to do research. Since I visited Davis frequently, and this was a fellow scientist who was in need, I owed him the respect and decency to at least meet with him. The man I met, Paul Lu, was startlingly intelligent, dignified and accomplished. I didn’t really have sufficient funding at that time to hire him, but I did anyway, taking a chance that both he and the funding would work out. It was one of the best decisions I’ve made. Paul is an exceptional individual and human being, before one takes his injury into account. After taking his injury into account, he is even more impressive.” Lu already had expertise in molecular biology and histology. He quickly got up to speed on the basic biology of spinal cord trauma; his first publication showed how to clone the important axon growth factor BDNF, leading to an experimental gene therapy to promote motor axonal regeneration after spinal cord injury. Lu hadn’t been in San Diego long before Tuszynski published a paper that generated high publicity, and high hopes. Tuszynski’s initial strategies for enhancing regeneration after SCI focused on delivery of growth-promoting factors to lesion sites. Says Lu, “In 1997 Tuszynski had a pa-


November/December 2015 - thehubsocal.com 19


“USING THIS METHOD, AFTER SIX WEEKS, THE NUMBER OF AXONS EMERGING FROM THE INJURY SITE EXCEEDED BY 200-FOLD WHAT HAD EVER BEEN SEEN BEFORE.” per in the Journal of Neuroscience that got a lot of attention, even in Chinese newspapers. Mark had used gene therapy to promote axon growth—he used a genetically modified fibroblast, a skin cell, to express a growth factor called NT-3. When grafted into the spinal cord, there was significant functional recovery. This was exciting for the field. At the time, I thought we were really close to the solution. However, delivery of NT-3 promotes corticospinal tract axonal growth around the lesion site and not through or into the lesion site; also, this experiment used an incomplete dorsal hemisection model that does not occur in human spinal cord injury.”

AXON BRIDGES, BUT NO TREATMENT In 2003, Lu was co-author of a study that grafted NT-3 in a chronic SCI model. Grafted animals showed significant growth of corticospinal axons up to 15 mm beyond the lesion site and showed a modest but significant improvement in locomotor scores, compared to control-grafted animals. The next year, the lab combined NT-3 with a molecule called cAMP, which activates nerve cell signaling. This time, axons regenerated not only into the cell graft that was expressing NT-3, but also beyond the injury site. Lu and his colleagues believed this to be a major advance toward spinal cord repair. “We observed, in our own hands for the first time, convincing evidence of axonal bridging in mid-cervical spinal cord lesion sites.” Nice result, but still not ready to be a treatment. In 2007, Lu and Tuszynski tried to coax their growing axons to cross the tough scar tissue that surrounds the lesion site of chronically injured animals. They grafted bone marrow stromal cells (MSCs) into mid-cervical SCI sites of adult rats, six weeks post-injury; this provided a hospitable environment for axons across the scar. Other animals received MSCs genetically modified to express NT-3, which further stimulated axon growth.

20 thehubsocal.com - November/December 2015

GETTING ON THE STEM CELL TRACK Meanwhile, Lu had become interested in the potential of stem cells. “Cell lines were becoming available to study. I asked Mark if we could pursue this area. He wasn’t convinced and advised against it but told me, ‘You can try.’” So starting in 2002 or so Lu began to graft embryonic stem cells in the spinal cord. Once transplanted, however, the cells did not stay in the lesion area. They died. “My challenge was how do I get the stem cells to survive in the spinal cord injury site?” Lu came up with a cocktail approach, using a combination of stem cell transplantation and a unique blend of 10 growth factors imbedded in a sticky fibrin paste. The work was detailed in a widely cited 2012 paper in the journal Cell. Lu noted that this regeneration could even occur in a chronic injury, “even after substantial delays from the original injury, even after three months in rodent models.” The study was widely reported in the news media. Tuszynski described the results as “astonishing.” “Using this method, after six weeks, the number of axons emerging from the injury site exceeded by 200-fold what had ever been seen before. The axons also grew 10 times the length of axons in any previous study and, importantly, the regeneration of these axons resulted in significant functional improvement.” The procedure created new nerve circuitry that could be detected electronically. And when Lu and his team recut the spinal cord above the implant, the animals lost function, confirming that recovery was due to the growth of axons. Results were replicated using two human stem cell lines, one already in human trials for ALS and approved for spinal cord injury, from the company Neuralstem. Ready for the clinic? Not quite. Recovered function in the animals was indeed meaningful but didn’t restore walking ability, or even the ability to bear weight. The stem cell approach is not ready for clinical therapies, but according to Tuszynski “it

Neuroscientist Paul Lu showing section of spinal cord after stem cell transplantation.

would not be crazy to think they will be useful for humans.”

CHRONIC INJURY, WHY NOT? What’s next? Lu of course has his eye on chronic spinal cord injury repair. Using genetic techniques to stimulate the intrinsic growth of a nerve cell, plus the addition of


molecules to condition the environment to encourage growth, and perhaps the addition of other molecules to direct nerves toward the proper targets, Lu is confident he can bridge the area of damage, including the scar tissue, and make new, functional connections. Lu is also very encouraged about new

types of engineered cells, induced pluripotent stem cells (iPSC), which behave very much like embryonic stem cells but because they are derived from adult cells, there is no ethical controversy. One drawback to iPSC cells is that after transplantation there’s some risk of tumor formation, so Lu is experimenting with a drug used

in cancer research to stop unwanted cell division. “Our hopes are high,” says Lu. “We will continue to fit the pieces together, with the goal of moving a therapy to humans.” Article previously appeared in Progress in Research, a Reeve Foundation publication.

November/December 2015 - thehubsocal.com 21


Horse and Rider ALANNA’S PARALYMPIC HOPES

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Article and Photographs by Michael Hansel

W

hen Alanna FlaxClark was 13 years old she woke up one morning and couldn’t move her right foot. After a number of medical consults and progression of symptoms throughout her entire body, she was diagnosed with a chronic neurological disease that causes multiple, functional loss in the bones, muscles, nerves, skin and blood vessels. She spent the next few years in and out of hospitals undergoing therapies and invasive treatments. Alanna went on to college in Memphis, double majoring in biology and psychology, then moved to Boston and obtained a master’s degree in education; after, she began a career specializing in children with special needs. Two years later, in 2007, Alanna’s health began to decline. She became very ill with a terrible infection and ended up in the hospital with a spiking fever, dangerously low blood pressure and a seriously high heart rate—eventually causing her to lose many functions throughout her body and use a wheelchair full-time. While Alanna has done modeling, acting and many sports, her current passion is horseback riding—specifically para-dressage, the only equestrian event in the Paralympic Games. Similar to standard dressage, para-dressage requires riders to complete dressage tests that are designed to assess their communication with the horse. The tests are completed in an arena surrounded by letters, which are used as markers for required movements and patterns. The classification manual has a se-

ries of profiles determined by numerous physical tests that are used to place riders into what they call “grades.” MH: What is it about horses? Have you always been into the world of equine? AFC: I was never that girl running around in cowboy boots. I really wasn’t around horses and didn’t know much about them. The closest I ever got to them was when I went to the pony rides across the street from my house. Horses really only came back into my life when I was older, and when I needed them most. MH: So you were introduced to horses as part of rehab? AFC: I started hippotherapy (horse therapy) at Ride On Therapeutic Center in Newbury Park (rideon.org) in 2012 and am grateful for everything they did for me. I went from doing physical therapy to gaining enough strength so I could start therapeutic riding lessons. It was there that I competed in my first show and started to learn more about the sport of para-dressage. I just felt so free and happy when I was on my horse. I loved the challenge it brought me and wanted to learn more. MH: Tell us about your trainer— gold medal rider Lehua Custer. AFC: Lehua had never worked with a para rider before and wasn’t quite sure how I would mount her horse, since there wasn’t a ramp at the center. I’m the type of person who doesn’t let anything stand in my way, so I assured her I could get on from my chair if she gave me a

leg up. Once I’m in the saddle, the basic principles, theory and training are all the same—I just have some added bonuses with the para rules, aids, etc. I went to meet her and her Swedish warmblood, Zotti; now she can’t get rid of me! MH: What are the various classifications in dressage?  AFC: I’m classified as a 1B. Paradressage has a classification manual that’s recognized at the national and international level and has a series of profiles determined by numerous physical tests that are used to place riders into what they call grades. To be classified as a para-athlete, you must have a permanent and measurable physical disability; exams are done by physical therapists trained and accredited by the Fédération Equestre Internationale (FEI). All of these exams are performed off the horse. Classification is a statement of fact regarding an individual’s physical performance, not one’s skill. A rider is assigned a grade—from 1A for the most severely impaired, to grade IV for the least impaired—thus, a group of riders may not have the same disability, but they fall into the same profile of function that allows them to compete against each other. Many might think the word “para” in paraequestrian or para-dressage may mean paralyzed; however, para-equestrians are made up of people of all sorts of disabilities. “Para” literally means parallel and as riders we go through the same exact training, rules and regulations as any other person would. Para refers to the sport of dressage, so that

we’re able to show and compete alongside our peers no matter our physical disabilities. MH: What do you have to do to qualify for the Paralympic Games next year in Rio? AFC: First I have to qualify, or obtain a starting slot for a National Paralympic Committee (NPC) at the Paralympic Games. The FEI Paralympic Athletes Ranking List, which is used to allocate individual starting slots, is a ranking list of athletes only. Once qualified for a starting slot, the athletes still need to obtain an eligibility score, which certifies that the athlete/horse combination has the required skills and experience to compete in the Paralympic Games. The eligibility score that’s required in the process of nominated entries needs to be obtained by the athlete/horse combination. Training for a competition is just like it is for any of our peers. As a para rider it’s critical to figure out my compensatory aids; for example, I use two whips to act in place of my legs and loops that go around my wrist to control the reins. I’m not able to adjust the length of my reins, so I need to make sure that Zotti is aware of my cues and how best to react to my aids. We always need to be in perfect harmony, so it’s like we are acting as one. When training, I try to set manageable goals to work toward and stay focused in the moment. If I have a bad day, I look to see how to improve for next time and try to be proactive. We always drill patterns and work on new skills, so I have enough saddle time to develop the muscle memory

November/December 2015 - thehubsocal.com 23


We were given the opportunity to ride Zoe, a beautifully trained Hanoverian mare with a gentle nature. She was a great match for me in her size and movements. strengths in other areas. Each day, Lehua participated in doing group warm-up lessons on Zoe; she then participated in collaborative coaching in the arena, which allowed for immediate feedback with Clive and Hanneke while assessing my positional and gait challenges, adaptive equipment and horse selection. At the end of the week, I was given the chance to perform my individual para-dressage test and have it judged by the high standards of Hanneke Gerritsen.

necessary for true mastery. I truly appreciate Lehua’s guidance and support and her ability to engage with me. This is her first time working with a para athlete and part of the training is collaborating with me and understanding how my body is doing on a day-to-day basis—learning how I react to the heat, cold, travel, etc.—and how to adjust my training ac-

cordingly. We’ve been able to work together as a team, learn and have fun in the process. MH: You recently trained in Maine. Did you focus on specific skills or was it more general in nature? AFC: Lehua and I both went to the Carlisle Academy in August. We were fortunate to work with International Para-Dressage

24 thehubsocal.com - November/December 2015

Coach Clive Milkins from the U.K. and FEI Paralympic Dressage Judge Hanneke Gerritsen from Holland. We were given the opportunity to ride Zoe, a beautifully trained Hanoverian mare with a gentle nature. She was a great match for me in her size and movements and gave me the chance to focus on different skills throughout the week and improve my

MH: How can people help support your training? AFC: It will take a team of people to help me turn my dreams into a reality. Training, travel, competitions, equipment, clinics, vet care, farrier work, entry fees, etc. are just some of the many things that go into building a successful competitive para-dressage rider. There are many products and services that will help me in my journey including specialized tack and saddles, apparel, travel and equipment. If you would like to do donate or attach your company’s name to my journey through any of the products or a cash sponsorship, please contact me at alannaflax-clark. com; a GoFundMe account has also been set up to take donations at gofundme.com/paradressage.


GETTING PERSONAL DATING WITH DISABILITIES LINDA R. MONA, PH.D.

lost and found in love PLAN YOUR RESPONSE TALK FROM A SCRIPT If you feel uncomfortable discussing your disability, think about what you may want to say ahead of time. Practice with a friend; or, if you prefer to practice alone, record yourself or look at yourself in a mirror to get an idea about how you come across and what words bolster your confidence.

DISABILITY AND DATING has been a

PLAN YOUR RESPONSE TO QUESTIONS. If it makes you feel better, think about what you might say if you were asked directly about your disability. Some people have a standard response they always give to questions; for example, “As you can see, I’m a wheelchair user and require sitting at a table, not a booth, at a restaurant.” Some people may want to take this a step further and say, “I need to sit at a table, not a booth, for easier access for my wheelchair, which also means I get to sit closer to you!” Think about what feels right to you, add some flirtatiousness, and go for it!

hot topic on dating websites and online disability communities for years. While there’s some great material on how to locate partners, what to say, what not to say and more, I often wonder: To what degree are these strategies working and how comfortable do people feel implementing them? As a psychologist, I think how we feel about ourselves is just as important as the social supports that we have in place (e.g., transportation, caregiver services, etc.), so my question is: How do people with disabilities date successfully when there are both dating skills required, in addition to potential social constraints?

PLAN OF ATTACK Before you begin your dating quest, think about the social barriers that may be present. Do you have your own transportation? Do you use caregiving services to get through your day? Are family members part of your caregiving team? All of these variables influence a huge part of dating—privacy. Think about ways to maintain your privacy with the supports you have in place. For example, if you need computer assistance from another person to begin online dating, ask a non-family member to assist you; if you don’t have your own transportation, think about potential safe meeting spots for a date that run along public transportation lines or suggest a meeting location that you can walk or roll to from where you live. Think broadly, anticipate potential bar-

riers and start planning!

FINDING PARTNERS The best advice typically offered to people with disabilities is to date online, which lifts many barriers when it comes to accessing others. While it’s up to you to decide whether or not you disclose your disability online with potential partners, keep in mind that the disability will surface soon within any relationship and it can be better to discuss the issue prior to meeting in person. Think ahead of time of how you want to present yourself online. How can you describe your disability as a part of you but not overshadowing all of you? Traditional ways of meeting people are also still quite useful. Tell your friends that you’re on the market and ask for their assistance with locating potential partners. Instruct them as to how you might want your disability framed as they market you to their friends.

DATING Discussing your disability on a date can be difficult—your new partner is probably curious about the nature of your disability if you haven’t already discussed it in detail. The hardest part of this conversation can be deciding when to have it. How does one lead into the subject? Do you talk about disability at the onset of the first date, or wait until the second, third or fourth meeting? People living with disabilities tend to worry about saying too much or not saying enough. Discussion November/December 2015 - thehubsocal.com 25


about disability typically comes up naturally within conversation. For example, a conversation could begin around a modified van, prosthetic device or mobility aide. When these subjects arise, respond honestly and openly to questions, and your prospective partner will see that you’re comfortable discussing the topic. Give a small amount of information within your response and observe the response. Was the information received readily? Were you able to move on to another topic easily? The answer to these questions will assist greatly with beginning to understand your date’s present comfort level. It can take some time for people to understand disability as a life experience; patience may be needed. If your date is unfamiliar with disability, she/he may simply blurt out, “What is your disability, and what do I need to do to arrange a date?” Although some individuals feel comfortable with this direct approach, others may not know how to respond to such a remark. Be compassionate, and try not to get offended. Remember, your date may simply be trying to make sure you both enjoy yourselves. If the person is being offensive, you’ll likely see rude behavior displayed during other

parts of your date as well. Given that there are many questions about what’s appropriate or not appropriate when dating with a disability, here are some tips and tricks to keep in mind along your journey.

DISCUSS YOUR DISABILITY; DON’T LECTURE AN AUDIENCE. Treat a date like any other social situation. Talk about your disability as it naturally occurs in conversation. If you’re asked directly about it, answer with details that are informative, but don’t launch into a 30-minute speech about your condition. If this date turns into a more serious relationship, you’ll find plenty of time to discuss the specifics.

WHEN YOUR DATING PARTNER HAS A DISABILITY Creating an environment open to discussion helps the person with the disability feel a sense of power over a potentially uncomfortable situation. Try something like, “I’m not sure if you feel comfortable answering this question, but I was wondering if you would mind discussing your disability?” This phrasing gives the person with a disability the choice of whether or

HAVE YOU SUFFERED SPINAL CORD INJURY? ARE YOU LOST IN A WORLD YOU NEVER DREAMED YOU’D BECOME A PART OF? DO YOU NEED RESOURCES? LOOKING TO GET CONNECTED WITH OTHERS?

not they choose to engage in these issues, and shows him or her you’re comfortable discussing the matter. Refrain from asking overly personal questions on the first date. For example, it’s not uncommon for people to be asked, “How do you go to the bathroom?” “How do you shower?” or “Can you have sex?” While some people may think that it’s not unreasonable to ask for such personal information, remember that people with disabilities are entitled to the same amount of privacy as anyone else. These questions are not appropriate for a first date and should be topics that surface naturally within a new relationship. Remember that although the ways in which people with disabilities live their lives may be quite different from nondisabled people, it’s normal. Be patient with yourself and others on this dating journey. Know that people make mistakes, and whether or not they make attempts to repair the mistake is important information. Look for support from friends and other people with disabilities. Meeting your life partner might be right around the corner—don’t miss out on the rewarding opportunity.

PROGRAMS:

· Care Baskets Full of Resources · SCI Support Groups · Keep Moving Forward Grants · Adapted Recreation · Peer Counseling

CONTACT TRIUMPH FOUNDATION TO HELP YOU REBUILD YOUR LIFE

www.Triumph-Foundation.org


GEAR GALLERY NEW PRODUCTS FOR FUN AND FUNCTION

OPEN DOOR POLICY When the door to opportunity or adventure is too heavy, automation is the key. The Open Sesame Door Opener allows push button entrance and exit. It unlatches a locked door, then opens, pauses and closes it; what’s more, there are a number of wheelchair-mounted remote controls, wall push pads and other customizable specialty controls. opensesamedoor.com

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stand up, get a grip

STAND & GLIDE Standing is good for the paralyzed body. Evidence shows it’s related to fewer bladder infections, better bowel regularity and better lung capacity. You can build a standing frame with plumbing parts, or get one like the EasyStand Glider. What’s cool about this one is you’re getting some cardio as you stand. easystand.com

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LOVE FOR THE GLOVE The often-neglected glove rarely calls any attention to itself, but now hand apparel gets some design love with the G-Love. While these unique hand protectors aren’t made with a wheelchair user in mind, they work great for rim pushing. “The high-tech grip is what makes our gloves unique,” says creator Hedda Royce. Plus, there are lots of styles, including the Grateful Dead (pictured). g-loves.com

AUTOMATED EMPTY Don’t have your helpers or friends flip the drain on your leg bag, say quads; instead, use a wireless system, like the Freedom Flow, featuring a rechargeable remote that sets up in minutes and requires no wheelchair mods. Just run tubing through a pinch mechanism, connect one end to your leg bag and point the other where you want it to drain. Press the button, and empty in 15 seconds. freedom-flow.com November/December 2015 - thehubsocal.com 27


MEDIA MATTERS EXPLORING FILMMAKING WITH HUMOR AND HEART BY DAVID RADCLIFF

becoming bulletproof

HEART AND SOUL The heart and soul of Becoming Bulletproof is the charismatic AJ Murray — his speech affected by his cerebral palsy, his spirit affected by talent and ambition. He credits the experience of making the documentary for allowing him to “feel significance, dignity and purpose.” Says AJ, “I do not want pity because I have a disability, I just want to be understood. I want disability to have a seat at the table in pop culture.” Once the cameras have cooled and the film is “in the can,” Murray confides his sadness that his Zeno experience has completed for the summer—and a frustration that returning to Georgia and into his mother’s care is a return to feeling “worthless.” But this heart-rending moment, like so many others in Becoming Bulletproof, isn’t mined for sympathy. Instead, Murray’s confession reinforces a premise central to the documentary’s power: perhaps a talented person like AJ Murray is only as disabled as his lack of opportunity allows.

TALENTED FILMMAKERS have paid visits to the Wild West again and again, but rarely so imaginatively as in Becoming Bulletproof, a nimble documentary from director Michael Barnett and producer Theodore James. The film explores the behind-the-scenes triumphs, trials and romances that unfold during the making of the original short Western drama, Bulletproof, a gunslinger epic populated almost entirely by actors with disabilities. Chief among these actors is 29-year-old AJ Murray, a charismatic and dryly funny Georgia native who, near the start of the documentary, travels to Vermont to join Zeno Mountain Farm, a summer collective of artists and filmmakers led by brothers Will and Pete Halby. Ensconced in woodland beauty and enriched by creative spirit, Zeno’s mission is to “support lifelong friendships between people of diverse abilities” and to collaborate yearly with actors who may too often slip under the radar of traditional Hollywood storytelling. For Murray, joining up with Zeno presents more than an opportunity to act before cameras— it’s a chance to experience true autonomy for the first time. Back home in Atlanta, Murray’s severe cerebral palsy has left him largely dependent on

28 thehubsocal.com - November/December 2015

his mother, Cynthia, but he quickly finds himself thriving amidst the Zeno community—building dynamic new friendships, shouldering significant responsibility, and taking pride in his performance as a stately town mayor. As the documentary nears its end, it becomes clear the filmmaking experience has allowed Murray and many of his castmates to unlock parts of themselves they may not otherwise have been encouraged to discover. “You never really see anybody with a disability on TV,” Murray says. “We’re just asking for a seat at the table...I don’t know if I’m crazy, but my dream is to become a professional actor.” The production of Bulletproof allows each member of the Zeno community to bring himself or herself one step closer to that shared crazy dream—and the production of Becoming Bulletproof gently prompts audiences to examine their own preconceptions about the intersection of disability and artistic talent. As behind-the-scenes romances unfold, and as the actors confront intimate topics including dating, sex and social isolation, Hollywood’s overwhelming preference toward performers without disabilities registers as a remarkable blind spot in its storytelling opportunities. There is far too much humanity and talent in Becoming Bulletproof to be ignored or trivialized. The documentary’s primary strength is its ability to side-step the mawkishness that so often accompanies big-screen depictions of disability; rather than wallow in the physical conditions of his interview subjects, Barnett trusts these artists to register as complex and interesting people united in the pursuit of quality storytelling. Interwoven throughout the behind-the-scenes challenges of location logistics and dialogue memorization are sequences from the Bulletproof Western itself, which culminates in a classic high-noon shootout between actors Jeremy Vest (as the heroic Bulletproof Jackson) and Zack Gottsagen (as the villainous Grimm Jim), both of whom demonstrate a natural ease in their roles.

‘BECOMING BULLETPROOF’ will screen at Los Angeles’s Museum of Tolerance on November 12, hosted by actress Jamie Lee Curtis. For additional screening locations, or for more information about the film, visit becomingbulletproofmovie.com. Photo: by Michael Hansel


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theHUB November December 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...

theHUB November December 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...

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