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DESCRIPTIONMiss International Issue Feb/March
$4.99 Volume 2009 MISS INTERNATIONAL FEB/MARCH
MANAGING EDITORPamela K. Johnson
MANAGING HEALTH EDITORE. Thomas Chappell, MD
HEALTH EDITORSGillian Friedman, MDLarry Goldstein, MDNatalia Ryndin, MD
CONTRIBUTING SENATORU.S. Sen. Tom Harkin (D-IA)
EDITORSJan DemskisDahvi FischerRenne GardnerSonnie GutierrezEve Hill, JDJosh PateDenise Riccobon, RNMaya Sabatello, PhD, JD Romney Snyder Jane Wollman Rusoff
CONTRIBUTING WRITERSLinda Boone HuntGale Kamen, PhDLaurance Johnston, PhDAndrea KardonskyDeborah Max Myles Mellor - Crossword PuzzlePaula Pearlman, JD John PaizisRichard PimentelAllen RuckerKristen McCarthy ThomasBetsy Valnes
HUMOR WRITERSGeorge Covington, JDJeff CharleboisGene Feldman, JD
WEB EDITORJoy Cortes
GRAPHIC ART/ILLUSTRATIONScott JohnsonKeriann MartinMelissa Murphy - Medical Illustration
The views expressed in this issue maynot be those of ABILITY MagazineLibrary of Congress Washington D.C. ISSN 1062-5321
Copyright 2009 ABILITY Magazine
DIRECTOR OF BUSINESS AFFAIRSJohn Noble, JD
MARKETING/PROMOTIONSJo-Anne BirdwellJacqueline MigellAndrew Spielberg
NEWSSTAND CIRCULATIONJohn Cappello
NON-PROFITSABILITY Awareness/Fuller CenterHabitat for Humanity
6 SENATOR HARKIN The Christopher Reeve Act
8 DAY OF SERVICE Of Kings & Presidents
10 GREEN PAGES Dont Let Money Fly Out the Window
12 HUMOR Theres Nothing Out there
14 FILM CIRCUIT Reeling Through Sundance
16 MILLARD FULLER His Work Will Go On
18 SKIING A Crash Course
22 MULTIPLE SCLEROSIS One Day At The Beach
26 SECRET LIFE Young Actors Get Their Due
30 MISS INTERNATIONAL How She Won the Crown
38 ASHLEY FIOLEK Teen MotoCrosser Zooms Ahead
46 UNITED CEREBRAL PALSY Game On!
48 GEORGE COVINGTON Dont Look Now, Bambis Back
50 CHRISTOPHER REEVE His Foundation; His Champions
60 CROSSWORD PUZZLE Guess Your Best!
64 EVENTS & CONFERENCES
74 SUBSCRIBE TO ABILITY MAGAZINE
ABILITY Magazine is published bimonthly by C.R. Cooper, 8941 Atlanta Ave. HB, CA 92646(ISSN 1062-5321) All Rights Reserved.
Subscriptions: $29.70 per 1 year (6 issues). Periodicals postage rates at Irvine, CA and at additional mailing offices.POSTMASTER: Send address changes to ABILITY Magazine, Attention Subscriptions Manager,
PO Box 10878, Costa Mesa, CA 92627; Volume 2009 Miss International Feb/March
Printed in U.S.A.
Josh Pate learns to ski p. 18
information e mail [email protected]
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Linda and Millard Fuller working on a Fuller Center Home p. 16
Day at the Beach p. 22
Miss International p. 30
Schlepping @ Sundance p. 14
Not so Secret Life. p. 26
complex diseases of the brain and centralnervous system.
Later on, I got to know Christopher as afriend. He was warm with an impish senseof humor and a big smile. It was clear thathe spent many of his waking hours gather-ing information about spinal cord injuriesand the research being conducted in labo-ratories and clinics throughout the world.
Christopher told me and my colleagueson the committee that the kind ofresearch that we were doing on spinalcord paralysis was disjointed and notnearly as effective as it could be. Hedevoted himself to working with oth-ersscientists and researchers, as wellas members of Congress and theirstaffsto come up with ideas for bettercoordination of spinal cord studies with-in a unified structure.
These ideas were incorporated into legisla-tion that eventually became known as the
Christopher and Dana Reeve Paralysis Act. Sadly, hisdeath in 2004 robbed the paralysis community of itsmost passionate and effective advocate. Dana continuedher husbands quest until her own tragic death in 2006from cancer. At that point, thousands of Americanswhose lives have been touched by paralysis, continuedthe Reeves advocacy work, often at a cost to their ownhealth and wealth.
The act addresses a less-than-optimum status quo inwhich paralysis research is being carried out across mul-tiple disciplines with no effective means of coordinationor collaboration. Without these two components, time,effort and valuable research dollars are used inefficient-ly. Also, families affected by paralysis too often remainunaware of critical research results, information aboutclinical trials and best practices.
The bills goal is to:
improve access to services for people with paralysisand other disabilitiesprovide information and support to caregivers andtheir familiesdevelop assistive technologyprovide employment assistanceencourage wellness among those with paralysis
Christopher and Dana spoke up for all people livingwith disabilities. They spoke up for Parkinsons andALS research. They advocated for more generous fund-ing for the National Institutes of Health. The Reevesalways held out hope that Christopher would recoverfrom his spinal cord injury, and they fought just as hardfor others recovery as well.
A COURAGEOUS QUEST Elections matter! Case in point: the Christopher andDana Reeve Paralysis Act.
I introduced this bill in 2002 in an effort to advance col-laborative research into paralysis and improve the quali-ty of life for people living with paralysis and mobilityimpairments. Over the years, the bill passed twice in theHouse, but was repeatedly obstructed in the Senate.With the expanded ranks of supporters in the Senate,thanks to last Novembers election, the Christopher andDana Reeve Paralysis Act was one of the first pieces oflegislation passed this year.
In 1995, Christopher Reeve, famous for his role in thepopular Superman movies, was in an equestrian acci-dent that injured his spinal column and left him para-lyzed from the neck down. He was fortunate that hecould afford the very best doctors and nurses, the bestcaregivers and therapies. He could have just with-drawn into himself and focused on his own well-beinga full-time job in and of itselfbut he made adifferent choice, which proved him to be a man ofgreat character.
I first met Christopher in 1998 when he testifiedbefore the Senate Appropriations Subcommittee onLabor, Health, Human Services and Education; I wasa ranking member on that committee at the time. Itwas clear to me that he was a man on a mission tohelp others with disabilities. He not only put a face onspinal cord injury, but he also encouraged neuroscien-tists around the world to intensify research on
Now that the Christopher and Dana Reeve Paralysis Acthas passed the Senate, we hope it will soon pass theHouse, and then be signed into law by President Obama.If the Reeves were still with us, they would be the firstto acknowledge that even with this new law in place, wewould still have unfinished business. As long as there ishope for better outcomes with spinal cord injuries,Parkinsons, ALS and other such diseases, our work isnot done. As long as people with disabilities are forcedto live in nursing homes because Medicaid wont coverhome care, we cannot rest.
If we have just half the commitment, tenacity andcourage that Christopher and Dana Reeve had, then wecan make great inroads into these challenges.
Senator Tom Harkin
The ABILITY House program, working with, ABILITY Magazine and home buildingorganizations reaches out to volunteers with disabilities to help build accessible
homes for low-income families with disabilities. We are seeking corporations, foun-dations and churches to sponsor more homes. We can build in nearly 100 countries.
Please contact us for more information.
[email protected] www.abilityawareness.org
Iremember the day in 1968 that Martin Luther Kingwas assassinated. My mother, our neighbor Delores,and I had just come out of a bookstore in Los Ange-les. Mom revved the engine of our blue VW bug as webuckled ourselves into its funky, pleather seats. Justbefore we pulled away from the curb, bad newssquawked through the speakers of our AM radio. Theemotional announcer said that King had been gunneddown on the balcony of a hotel in Memphis; he was incritical condition. We raced home to hear the latestupdate from CBS Evening News anchor WalterCronkite, whom we trusted like a friend. When Waltertold us Reverend King was gone, we knew it was true.
At seven years old, I flipped through the then-popularLIFE magazine issue with Kings grieving widow andfour small children on the cover. I watched the footageof him and other leaders demanding civil rights bymarching through the streets of the South, under threatof attack dogs, hoses and police billy clubs. And I sawpictures of King speaking before hundreds of thousandson the Mall in Washington, DC, sharing his vision of anAmerica where his own childrenand children of allraces, faiths and colorscould live in a nation wherenothing prevented them from rising as high as theirwings would take them.
Cut to January 19, 2009. As we observed what wouldhave been Kings 80th birthday, his dream of full equali-ty seemed more real than ever. An African-Americanman stood poised to become this nations first Comman-der-in-Chief. Then-President-elect Obama issued a callof service to all Americans; he then spent the King holi-day painting walls at an emergency shelter for homelessteens, and visiting wounded troops at Walter Reed ArmyMedical Center in Washington DC.
The King Holiday has actually been a day of servicesince 1994, but this year a record number of Americansin all 50 states responded to Obamas call to report forduty. In total, according to the Corporation for Nationaland Community Service, volunteers took on more than13,000 projects, nearly tripling last years record of5,000 projects.
Calling it a day on rather than a day off, volunteerswent into communities nationwide and lent a handwhere it was most needed. Here are some highlights ofthe holiday:
The National Alliance for Faith and Justice recruitedmentors for children of prisoners and other at-risk youthat more than 425 places of worship as part of JusticeSunday.
Campus Kitchens engaged hundreds of college stu-dents and volunteers in leading hunger relief programs,including in Washington, DC, where volunteers helpedprepare 5,000 meals for delivery on King Day.
More than 16,000 college students from 130 campus-es in 28 states engaged in service projects, ranging fromneighborhood clean-ups to preparing and serving mealsto hospice patients.
More than 600 Boys and Girls Clubs engaged mem-bers in community clean-ups, writing letters to soldiers,organizing food drives, visiting senior centers and creat-ing care packages for sick children.
For my part, on January 19, I got a chance to connectwith an aspiring African writer. That day, I received anemail from the young journalist who lives in Ethiopia,asking me to send him books on journalism and a taperecorder to help with his job. Although I visited thecountry in 2000, I dont remember meeting this youngman. But somehow he got my email address. I wrotehim back: Yes, of course Ill send you those things, oncondition that you keep me apprised of your work. Theamazing aspect of this for me is that I was touched bythe children of Ethiopia during my trip, and wanted tofind a way to connect with its younger generation.
As night fell on the King Holiday, and the sun rose onInauguration Day, Barack Obama stood on the Washing-ton Mall, just as Martin Luther King had 46 years earli-er. Instead of the 250,000 in the audience in 1963,assembled in pursuit of jobs and freedom, and frustratedby racial inequity, this time the throngs numberedupwards of two million in the Mall vicinity. With hishand on Lincolns Bible, President Obama took the oathof office, signing up for what may be the toughest job inthe world.
Barack Obama was only a toddler when Martin LutherKing shared his dream for the future of Americas chil-dren. Perhaps the reverend's powerful words took a cir-cuitous route, and yet successfully made the trek fromKings lips to Obamas ears.
by Pamela K. Johnson
If youre anything like me, when you feel a draft in your house, your firstinclination is to shut a door or window. But if the doors and windows are
already closed, then you may chalk the breeze up to your imagination.If theres one draft after another, however, its probably time for an
Although IRS audits are dreaded and can cost you money, a homeenergy audit may help you save money by determining how muchenergy you currently use, and what steps you can to avoid squan-dering it. Drafts may indicate areas of your home that allow heatto escape in winter, and air conditioned cool to leach out in sum-mer. An energy audit helps you locate these areas, so that youcan save precious resources as well as money.
Possible sources of drafts or air leaks include baseboardedges, wall junctures, ceilings, electrical outlets, mail slots,wall or window mounted air conditioners, and areasaround pipes or wires. Energy experts indicate that poten-tial savings from reducing drafts can range from 5 per-cent to 30 percent a year. So it will pay to locate thesource of the draft, and then adequately caulk, weatherstrip or insulate the energy drain. In the long run, itmight even be worth it to invest in upgraded windowsand doors.
There are three systematic ways to perform an energyaudit: do it yourself with the use of various checklistsand simple household tools. Hire a professional energyauditor who uses more sophisticated tools. (Or askyour local/state gas or electric utility company toeither provide you with a free audit, or to help youlocate a qualified professional to do it.) Thirdly, take anonline survey that may be available at state or local gov-ernment energy offices or their utility websites.
Surveys cant substitute for eyes, ears and measurements,but they will help you estimate energy usage and provide
helpful hints on how to make cost effective changes. In fact,online survey results could indicate the need for a more thor-
ough energy audit, or affirm that your home already usesenergy efficiently.
Online surveys typically ask for information on energy usefactors such as the number of people in your household, the
size of your house, your thermostat settings during differ-ent seasons, lights, and washer/dryer and other appliancedemands to determine if your power usage is way out ofthe norm.
I recently took an online energy/water efficiency surveythrough the Southern California Edison website for myhome in Orange County, CA. (You have to be a customerto take it.) Upon completion, I received a report showinghow my family uses energy and water, and how much ourvarious appliances cost to operate.
The report indicated that lighting and the refrigeratoraccount for more than 50 percent of my power costs.Roughly 60 percent of my annual gas bill results fromheating water, while 63 percent of my water goes toshowers and landscaping. The report even compareshow my household compares with the regional averagesfor electricity, gas and water usage.
Im happy to report that we use less than the average inall three categories. Nevertheless, there are still waysthat we can be even more efficient.
On one survey question, we were asked if we use aninsulating blanket on the water heater. I neglected toreplace the blanket when I installed a new water heater acouple of years ago. Fortunately, this item is readilyavailable for around $22 at Home Depot, and willimmediately help us save gas and money.
The report also indicated that we could save an addi-tional $70 per year by lowering the water heater settingby five degrees. Additional savings can be had byinstalling low-flow shower heads and aerators for thefaucets. Some credit for how well we are doing must goto our Energy Star rated appliances and to our lightingchoices.
Backed by the government, the Energy Star programhelps individuals and businesses protect the environ-ment through superior energy efficiency. Its a ratingsystem that helps consumers choose more energy effi-cient products. In order to merit this rating, productsmust meet strict energy efficiency guidelines. If you seethis rating on a product, you know it will save you ener-gy and money.
I chose the online survey both because Im not the hand-iest guy in the world, and because I am perfectly happywith an online survey report. However, estimates wonthelp identify the exact location of air leaks and drafts. Ittakes eyes and ears to do this accurately. With a simplebut diligent walk-through, you can spot many problemsyourself. If youve got even a little Tim The Tool ManTaylor in you, take heed:
Window and doors are prime candidates for drafts andair leaks. If you can rattle them or see daylight aroundthe edges, then you probably have leaks. You can sealthese by caulking or weather-stripping them. You mayalso wish to consider replacing your old window anddoors with newer, high performance models, such asdouble paned windows.
Double paned windows consist of two facing glass pan-els set in a frame, separated by a tiny amount of space.
The void might be filled with air or nontoxic gas such asargon, which can improve insulation.
Double paned windows have advantages over standardwindows. They are better insulated, reduce noise, andare easier to clean. Double paned windows can also pro-tect items in the house from sun damage.
Three very common energy efficient materials for doorsare wood, steel and fiberglass. Wood itself is an excel-lent insulator. Steel and fiberglass doors have insulatingfoam sandwiched inside to make them energy efficient.Once youve got the right energy efficient door for yourhome, its important to have it installed properly. Youllwant to have a tight seal so air doesnt come in or out. Good door sweeps are another feature of energy effi-cient doors. Sweeps seal the gap between the door andthe threshold or doorsill. Attached to the bottom of thedoor, they offer increased energy efficiency by prevent-ing air from passing through. They also keep out debrisand insects.
The outside of your home should be inspected for possi-ble leaks as well. Pay special attention to corners andplaces where siding and chimney meet, or where thefoundation and brick or siding meet.
Heat loss through the ceiling and walls in your homecould be significant if the insulation levels are less thanthe recommended minimum. The insulation level mightbe inadequate, especially if you have an older home.The type and thickness of your insulation is readily visi-ble in the attic.
Heating and cooling equipment should also be inspectedannually, or as recommended by the manufacturer.Check filters and replace them as needed. If your heat-ing or cooling system is older than 15 years old, consid-er replacing it with newer, more energy efficient units toreduce energy consumption.
Energy for lighting accounts for about 10 percent ofyour electric bill, or in my case more than 30 percent.Lower watt bulbs may be more than adequate for somerooms. Of course, CFL bulbs consume less power andlast longer than incandescent bulbs. Your electric utilitymay even have programs such as financial incentives forpurchasing energy efficient bulbs.
Its that awful time again when I sit down at the com-puter, hoping to come up with a clever column. Theproblem is, Ive got nothing. Im just not feeling itright now. Im not motivated to write about global warm-ing, politics, the economy or even football. Crazy, isnt it?
Sorry. Its just that nothings biting me, which leaves mewithout something to write. Usually theres an item that Ican snatch out of the headlines, like a dingo eating a baby,a celebrity getting arrested, a song about girls kissing girls.But this time Im just not seeing it. Maybe I dont want tosee it. Maybe Im just content to stumble around in thedark. If Seinfeld could do a whole sitcom around nothing,then surely I can do an article on the same subject.
Good. Thats two paragraphs down. At least Im nolonger staring at a blank screen. I wish I could say thehard work is over, but theres still a lot of room left onthis page. Life is like that: Each day is a blank page, andsomehow we fill it up. A minute is a word. A day is asentence. A week is a paragraph. In a month youvelived a chapter. One day, when your book is done, yougo to that big library in the sky, and trust that some angelwill find a place for you on the shelf. If my book doesntfall behind the stacks, I should be the humor section.
My phone is ringing. Thank God! Hold a second
Okay, Im back. That was the Leukemia Foundation.They want money, but theyre getting nothing. I didntuse my real voice when I took the call. I used my timidJewish guy voice. Its one of my favorites. I know theLeukemia Foundation doesnt know my real voice, butthe disguise helps me. I dont feel like a heel for notmaking a contribution, because it wasnt me beingstingy, it was the timid Jewish guy. Even better, takingthe phone call means I can put off writing a bit longer.
Im chewing on a pencil now. Is that sick or what? Icant help but wonder how many people have alreadyslobbered on this filthy utensil. What if I get lead poi-soning? Lead poisoning may have killed off theRomans. Their dining plates were all painted and, asmany of us know, paint at that time contained lead. (Ithrew that in because Id feel terrible if my article didntprovide some educational element.) Oh, thats right,
pencils are no longer made of lead. Well then what if Iget slobber poisoning? Im putting the pencil down now.Time to get back to the matter at hand. This writingabout nothing sure is time consuming.
My bad. I had to stop and check my email. I hadnt doneit in six minutes, so I was long overdue. Wow, I havethree new emails. Unfortunately, theyre all spam. Whocame up with the name spam? I like it. It has a connota-tion of crap. I know Ill check my mailbox severalmore times before I finish this paragraph. Its an addic-tion, but a silly, worthless one. At least with other addic-tions you get high. Ill guarantee you someone will for-ward me something in the next two minutes. Ill readthe first line then delete it. Funny how we spend ourshort time here on Earth.
What to do? What to do? Right now Im moving thingsaround on my desk. It looks better. I never throw any-thing away. Who knows when Ill want to reread a pieceof junkmail, or get the urge to pay a bill? If we knewwhen we would die, no bills would get paid. Deskswould remain a mess.
Okay, back to the column. If someone asks you whatyoure reading right now, you can safely say, Oh itsnothing. You wont be lying. Its seems simple, but itshard writing nothing. Its just as hard as writing some-thing, and takes just as long. Either way, you still haveto think about what youre writing. Fortunately, theresno research involved, which makes my life easier, andisnt that what its all about?
Im looking out the window now, and theres a lot outthere that I could write about. For instance, how does aleaf know when to fall off a tree? And when it does, is itsorry it did? Theres no going back. The same with myarticles. Once I write a paragraph theres no going back.It is what it is. I could probably change it but Ive neverbeen a big fan of time and effort. Im sure thats why Illnever be a great writer. No problem; Im just aiming forokay anyway. Mediocrity puts far less pressure on me.
Look at that squirrel with nuts.
Okay, back to work. Nothing should come easy, butbelieve it or not Im struggling with this thing. I lookaround my office, hoping to find something to distractme. The cat pops in from time to time. Today I dontmind if he jumps on my lap. Now theres an expert onnothing. This furry creature barely lifts a paw all day. Ienvy him. Speaking of cats, a catnap doesnt sound toobad right now. Maybe Ill get lucky, and dream aboutsomething to write.
I hope in no way Ive disappointed you, my three read-ers. In my next article, Ill try to provide you with some-thing more substantive. But dont hold your breath.
by Jeff CharleboisHam on a Roll
For movie lovers, the Sundance Film Festival is anorgy of celluloid delights. Why else would peopledrag themselves out of bed at six in the morningto be added to the wait list for a film that may be soldout? Or slog through snow at midnight to catch a flicktheyve heard nothing about? Its because this event,along with a few others, is the crme de la crme of filmfestivals, always packed with great movies and a hand-ful of lucrative distribution deals for a precious few.
Originally known as the United States Film Festival,Sundance was created in 1985 by actor Robert Redford,and named for his cowpoke alter ego in Butch Cassidyand the Sundance Kid. This year, I made my second trekto the Park City, UT, fest to get in on the cinematicaction, which included several films that dealt withautism.
Opening night, Mary and Max, a claymation project,told the story of a 20-year pen-pal relationship betweenMary Dinkle, a fat, lonely 8-year-old girl in the suburbsof Melbourne, and Max Horowitz, a severely obese manwith Aspergers syndrome, who lives an isolated life inNew York City.
Another hit of the festival was Adam, about a relation-ship between a young woman and a young man who hasmild autism. Fox Searchlight bought worldwide rights
to that. Yet another movie with the autism theme wasthe popular Over the Hills and Far Away.
The most touching movie in my book was Push, aboutan abused girl whose fantasy life saves her until she cansave herself. The casting was a surprise, but comedianMoNique nailed the dramatic role of the girls mentallyill mother. Mariah Carey and Lenny Kravitz turned inimpressive performances as well. Push won the grandjury prize, the audience award for drama, and a specialjury prize for MoNique. If it doesnt get theatrical dis-tribution, I hope HBO or Showtime grab it and quicklyprogram it into their Black History Month rotation.
I had hoped to catch Chris Rocks Good Hair, about thephysical and psychological toll on African-Americangirls when theyor their caretakersdeem the girlshair as unattractive, and use damaging chemicals tostraighten it. I also missed Kevin Bacons TakingChance, about a lieutenant colonel who volunteers toaccompany the body of a fallen soldier as it is returnedhome from Iraq. Unfortunately, Good Hair was soldout, and Taking Chance opened after I left. This is acommon reality at Sundance: you hear about a greatmovie, but tricky logistics keep you from seeing it.
I did, however, get to see perhaps a dozen films. I alsofound it exciting to be out among the snow-dusted
Clockwisefrom top left:Inching downMain Street; abillboard withfilms showingat the fest,includingChris RocksGood Hair; animage takenfrom thescreen; amoosedecked out inher glamourget-up; SpikeLee and me;two womentrying to getback onto thecurb on MainStreet
mountains, riding on the free city buses, and talking toother festival-goers about the films theyd just seen andthe ones that they liked best so far.
Last year during Sundance, Park City was a wet, snowymess, which made this years frigid but sunny weather awelcome change. Although that made it easier for manyof us to get about, it wasnt the case for everyone. I meta couple of women who work at art-film houses inMassachusetts and Philadelphia; they had a hell of timegetting the Philadephia womans wheelchair from thefrozen street onto the uncut curb. A pole in the middleof the sidewalk blocked her sidewalk access at thatpoint. So, she had to roll the chair off the sidewalk, intothe street, past the pole, and then back onto the side-walk. Fortunately, the buses were fully accessible.
During the opening days of the 10-day fest (January 15-25), many celebrities were likely in Washington for theinauguration of the new president. However, I did runinto filmmaker Spike Leean old neighbor fromBrooklynon Main Street. His new film, PassingStrange, a documentary about a hit Broadway show,was entered in the fest. I also saw Mariah andMoNique at the Push screening, as well as Pierce Bros-nan and Susan Sarandon at the screening of their movie,The Greatest, an homage to 1990s Ordinary People(directed by Redford, by the way). There was a lot tolike about the film, however, I suspect that after havingshown it to an audience, theyll take it back to the edit-ing room to address the gaps in logic that prevent thefilm from living up to its name. Zoe, the daughter ofLenny Kravitz and Lisa Bonet (The Cosby Show), alsoappears in The Greatest.
As this was Sundances 25th year, a series of timepiecestills was used to open each films screening. I was toldthat the images represent a cool time machine thattheyd discovered and retooled. This seemed appropri-ate as time is always a consideration at Sundance: Timeto get from theater to theater. (It takes two to three timeslonger than you think.) Time to wait in line. (I dedicatedfour hours in line for The September Issue, aboutVogues editor in chief Anna Wintour, and still did notget in.) And time can seem interminable when yourestuck in a line of cars, inching along Main Street.
Though you can count on it to be as chilly as a popsiclein Park City during Sundance, theres no excuse for notworking a bit of glamour into your act, as the moose ina red coat with the fluttery eyelashes can attest.
If you havent checked out the festival out yet, add it toyour bucket list.
Pamela K. Johnson
The vision, eliminating poverty housing, belongedto Millard Fuller, a man whose ideas and tirelesswork created Habitat for Humanity, the worldslargest nonprofit homebuilding organization. PresidentClinton once said: I dont think its an exaggeration tosay that Millard Fuller has literally revolutionized theconcept of philanthropy.
An entrepreneur and attorney, Fuller earned his firstmillion dollars before the age of 30. But his financialsuccess came at the expense of his health and marriage.In a last-ditch effort to save their relationship, Fuller andhis wife, Linda, decided to start anew. The couple soldall they owned, gave the money to the poor and movedto Koinonia Farms, a Christian community in ruralsouthwest Georgia.
In 1976, the Fullers launched Habitat for HumanityInternational. By the organizations 25th anniversary,tens of thousands of people were volunteering withHabitat and more than 500,000 people were living inHabitat homes. Millard Fuller was a force of naturewho turned a simple idea into an international organiza-tion that has helped more than 300,000 families movefrom deplorable housing into simple, decent homes,said Jonathan Reckford, chief executive officer of Habi-tat for Humanity International. Fuller received morethan 50 honorary degrees and in 1996 received the Pres-idential Medal of Freedom, the nations highest civilianhonor. In presenting the medal, President Clinton said,Millard Fuller has done as much to make the dream ofhomeownership a reality in our country and throughoutthe world as any living person.
After separating from Habitat for Humanity in 2005, theFullers remained committed to their mission to eradicatepoverty housing by founding The Fuller Center forHousing. In addition to continuing the couples life-longmission of building simple, decent homes, the FullerCenter also raises funds for other nonprofit homebuild-ing organizations. In keeping with the model created forHabitat for Humanity, the Fuller Center utilizes volun-teers from churches and other corporate and communityorganizations to help construct homes. Since 1976, mil-lions of volunteer hours have been dedicated to buildinghomes in every corner of the globe.
Hammering away on a house, one volunteera youngman who had schizophrenia and wrestled with suici-dal tendenciesonce shared: Every day I try to findone positive thought that will carry me over to thenext day. Today has given me enough memories forthe next two years! This scene was from a typicalHabitat site, but this wasnt an everyday buildit wasan ABILITY Build.
Although Fuller encountered barriers within thebureaucracy of Habitat for Humanity that preventedhim from implementing strong mandates regardingvisitability (one zero-step entrance and an accessiblerestroom on the main floor), he was a key figure sup-porting the launch of the ABILITY Build, which laterbecame an award-winning program. It was during a1999 interview with Chet Cooper, founder of ABILITYMagazine and ABILITY Awareness, that the idea ofan ABILITY Build took root. Initially, constructed inpartnership between Habitat for Humanity and ABILI-TY Awareness, an ABILITY Build would create anaccessible and visitable home for a family where oneor more members have disabilities. Fuller was quickto agree with Cooper that ABILITY Builds shouldalso engage people with all levels of disability as volunteers.
The ABILITY House will remove the barriers thatkeep people with disabilities from owning their ownhomes, Fuller said later that year at the launch of thefirst ABILITY House, which welcomed more than 250volunteers with disabilities. This build will send apowerful message: People with disabilities can make ahouse into a home.
Since the initial home was constructed in Birmingham,AL, thousands of volunteers with physical and intellec-tual disabilities, as well as some with mental healthissues, have participated on ABILITY Builds, demon-strating their skills and talents, while highlighting theiremployability and capacity as volunteers. Millardshands-on role during the first ABILITY Build helpedensure the success of a program that has changed thelives of people with disabilities in communities allacross the country, shares Cooper, and we willremember him for his dedication, his passion and hiscommitment to ensuring that all people, including those
with disabilities, would have access to simple, decenthousing.
For their upcoming 50th wedding anniversary, theFullers had planned to celebrate with a 100-home blitzbuild across the globe and, in the months before hispassing, he was still helping to take the ABILITY Buildprogram to new heights, orchestrating a collaborationbetween ABILITY Awareness and The Fuller Centerfor Housing. Well probably go ahead with the blitzbuild. Millard would not want people to mourn hisdeath, said Linda Fuller. He would be more interestedin having people put on a tool belt and build a house forpeople in need.
And so, in memory and in honor of Millard Fuller, ourfriend the humanitarian and visionary, we encourageyou to do just that: Put on a tool belt and help build ahouse.
by Romney Snyder
The Fuller family requests that any donations made inMillards honor be made through The Fuller Center for Housing
Theres a little bit of blood on your nose, saidAndy Gabel, my ski buddy, as he leaned onto thesnow to take a look at my face. I pulled my glass-es away and knew why. There was a clean-cut hole inthe right lens and blood stains on the bridge of theshades that once sat across my nose.
My ski instructor, Robert Leavitt, knelt down anddabbed some snow on my cuts to absorb the blood. Mywife, Julie, and friend Amy skied over to see if I wasokay. They had seen me ski my best run of the weekendas I cruised down Funnel Bypass just seconds before Icrossed skis with Robert and flipped in my bi-ski.
Nothing hurt. My teeth were intact. So we did the onlything we knew to do at the time. We took a picture.
Robert (pronounced ro-BEAR) offered an explanationof my first crash while learning how to operate a sit-ski,then we whisked off down the mountainside to the near-est stop for paper towels.
You may scare some people, Robert said with histrademark dry wit.
Why, because of my face? I asked as we continueddown the hill.
Yeah, he said.
Snowmass has a vertical drop of 4,406 feet and is thesecond-largest ski area in the country. Its covered inalmost five feet of snowthats intense. I skied on thesame slopes that hosted the X Games less than a weeklateralso intense. I learned to navigate a sit-ski withtwo mini-crutches with skis on the end (called outrig-gers)doubly intense. I flipped my way to a stop on mysecond day of learning to ski thats intense. And I wasready to go down the mountain again.
YOU KNOW WE CALL THIS ADAPTIVE SKIING, RIGHT?
I had no expectations around learning to ski. I didntknow how I would be getting on a ski lift. I didnt knowif I would be sitting or standing; I have cerebral palsy
and walk with forearm crutches, so standing could be anoption. So I was open to anything, and that ended upbeing a positive.
What I did know is that Challenge Aspen, a non-profitorganization in Snowmass Village, CO, specializes inteaching people with disabilities how to reach theirmaximum potential in a variety of outdoor physicalactivities. That includes learning how to ski.
What weve seen is that it just opens up opportunities,especially in younger people, said Sally OKeefe,Challenge Aspens recreation program manager. Someof them cant walk or speak, but you put them on ahorse or in a ski or in a raft and it doesnt matter. Ourgoal is that by the end of the week they take that (expe-rience) into the real world and try new things.
I was one of 10 people enrolled in Challenge Aspens13th Annual Mono-Ski Camp from Jan. 15-22. It wasthe third camp of the winter, and the biggest. It wasdesigned for intermediate and advanced skiers, but itwas opened up to all levels of skiers due to demand. Theprice typically ranges from $500 to $800 per camp. Thatmoney is directly used to run the camps, and ChallengeAspen also raises money through two major fundraisingevents each year as well as grants and donations. Thefinancial books, however, do not include the in-kindgifts of free lift tickets (approximately $250,000 a year,according to the staff) or the free rentals at Aspen Sportsin the Snowmass Mall (about $100,000 annually).
For this camp, there were eight professional ski instruc-tors, 11 ski buddiesextra skiers to block the otherskiers from impeding spaceand two full-time employ-ees, according to Nikki Malcolm, the groups and campscoordinator at Challenge Aspen. All ski buddies hadgone through adaptive ski training, while some hadachieved higher certifications from Professional SkiInstructors of America.
We came from everywhere: Georgia, Minnesota,Kansas, California and even Mexico. We had varyingdisabilities, including CP, brain- and spinal-cordinjuries. Our previous ski experiences were wide-rang-
ing, too. One skier, Tim Miller, had been to eight previ-ous Mono-Ski Camps at Challenge Aspen and couldeasily ski on his own, while I had never even touchedski to snow.
The first time I sat in a sit-ski was during the SeatingClinic on the camps first day. While most of the partici-pants planned to use a mono-ski, I was going to use abi-ski. A mono-ski is a bucket that is mounted atop asingle ski. It requires more balance and skill to maneu-ver down the mountain, and beginners often fall tryingto master the technique. A bi-ski is designed similarly,only with two skis on the bottom and a lower center ofgravity; perfect for beginners.
Padding helps fit the skier to the bucket. The moreupright a skier sits, the better mobility he has to make aturn, which requires turning the head and upper body inthe desired direction.
Short crutches called outriggers with a tiny ski on theend help for balance and turning. In ski position, the skipoints forward and glides above the snow. In standingposition, it flips up with a spiked edge digging into thesnow to provide traction for mobility and leverage(often used to load onto the ski lift and move the skishort distances).
The interesting part about Challenge Aspen is wecall it adaptive skiing, and we have to adapt, Robertsaid. Every skier is so different that it makes us asski instructors think. Rather than me teaching thesame lessons over and over again, ... every lesson isdifferent and its a challenge as a ski instructor.
IT WAS HARDER THAN I THOUGHT
The ski sat in the snow. I plopped into the bucket. Putmy gloves on and strapped on my helmet with the helpof Cory Connett, my ski buddy for the first day. Cory,who has been at Challenge Aspen since November, hasspent a lot of his time working with children with cogni-tive disabilities, something that takes great patience andoperates at a slower process to get the participantsfamiliar with their new environment. Ive been in a bi-
ski, he said. We took it out so we could get the feel ofit, and get perspective on how to teach others to use it.I want to be an instructor so I want to learn what itfeels like.
My wrists slipped through the riggers and my handswrapped around the handles.
Ready, Josh? Robert called out as the moment of truthcame.
Robert began pushing with his skis, holding on to thebucket. We topped the tiny ridge where everyone wasloaded into their buckets, and down we went.
The wind was cold in my face as we swept right, andthen left down the hillside. The loading area was alongFanny Hill, one of the busiest runs on the mountain,since its located beside the Snowmass Mall. We dodgeda few kids taking a lesson, passed one or two beginners,and then headed over the short chute as Robert calledout the turns to me.
Left turn right turn left turn right turn.
Robert instructs visually impaired skiers, and he usedthe same teaching method for me. Instead of explain-ing what we were going to do at the top of a run, thenreviewing at the bottom, Robert talked me through itas we skied. It was imperative, I later discovered, inhelping me know where to go on the mountain andlearn while I was skiing. I wasnt familiar with theruns, and even after we skied down the popularDawdler run several times, I still cant describe oneinch of snow on it. Yet Roberts calm direction madethe learning curve manageable.
Theres a checklist that the mind goes through for eachturn of the ski:
1. Look in the direction of the turn. Turning the head, asRobert explained, forces the torso to turn in the samedirection, thus providing leverage for a greater armreach with the rigger.
2. Extend the outrigger and use it. The rigger should hitthe snow and be aimed at a 45-degree angle away fromthe sit-ski. It provides direction, much like front wheelsof a car. When the rigger is on edge, it allows for moreleverage against the snow and a better turn.
3. Lean the body in the direction of the turn. An aggres-sive turn results in a pop feelingthe skier is pushingagainst gravity to turn, as Robert explained, and contin-ues to push until, pop, he gives in. The ski then shiftsto the neutral position, and the next turn begins.
These were my assignments as we went down run after
Skiingwith a little helpfrom a friend.
run: improve on the pop feeling and shift from turn toturn. Turning keeps speed under control.
Your instincts tell you to make too big a move, saidRobert, who has ridden in a mono-ski twice with some-one bucketing him. It was harder than I thought. Ihad a hard time dialing in the more subtle movementsand I never felt that cool feeling of tipping on edge.
Due to my short stay at the Mono-Ski Camp and thetask to learn as much as possible, Day 1 was spentcramming for the examlearn to turn, evaluate what Ican do on my own and move forward the next day. Day2 was set aside for a rehash of the basics, then a moveto tethering.
Bucketing has the instructor directly behind the ski sometimes holding; sometimes with a hand on the buck-et just in case; and sometimes with a hand simply on theside of the bucket. Think of riding a bike with trainingwheels. The progressive step is tetheringme in thebucket with an instructor skiing behind only connectedby tether straps. The beginning stages have a short dis-tance between student and instructor, sometimes as littleas a foot. The better the student gets, the longer the tethergets and the less control the instructor has.
CAN I GET A SLOW DOWN AND A PULL BACK?
Very little about the process was easy. There wereequipment malfunctions on both days of skiing, primari-ly with the connection of the skies to the bucket.
To load onto the ski lift, the skis are supposed to remainin position while the bucket is lifted Robert and myski buddy lifted the bucket onto the lift. A lift operatoris charged with slowing down the lift and then pullingthe ski back onto the seat. The bucket is then safety-strapped and the lift bar goes down.
Sounds simple, until an equipment malfunction rears itshead.
Practicing before our first trip up the lift allowed Robertand Cory to discover that my bucket was not separatingfrom my skis. The temporary solution was for Robert tokeep his foot on the ski during our load. No problem.But once we got to the top of the lift, the ski didnt slideoff as its supposed to. The ski stuck to the lift seat, thefront of the ski went down into the snow, and once itpopped off, it fell on top of me. Robert and Cory wentdown, too.
Stop! Robert yelled.
The lift stopped, and we quickly discovered the issuewas again that the ski was not separating from the buck-et. We took the gondola next time.
A quick change in skies solved the problem after lunch,
only until loading onto the ski lift at Max Park, a begin-ners area that is relatively flat. The lift operator failedto pull my ski back onto the seat, and down we wentagain into the snow.
Im sorry, Im sorry, the operator said as he scrambledover to us.
Was it my fault?
Yes, Robert said.
Youre supposed to be trained on that, Cory added.
The failure of the ski operator, however, was no doubt arare occurrence as every other time we entered the lineto load onto a lift, the operators assisted like an oiledmachine, most of the time without instruction.
Tim, who has been skiing for nine years and can be near-ly independent on his mono-ski, has advanced to loadingand unloading himself onto the lift. And after our liftadventures, that is clearly a useful skill.
THIS HAS CHANGED MY LIFE.
Prior to the Mono-Ski Camp, I had spoken with severalskiers with disabilities who had been to Aspen or Snow-mass, skied down the mountain for the first time, andhave not been the same since. Skiing changed my life,was the common phrase.
They were right.
People can arrive here with very few aspirations, orhave been told they cant do this. And then they comehere and three days later theyre skiing from the top ofthe mountain, said Sarah Williams Volf, director Chal-lenge Aspens C.A.M.O. program for injured veterans.People have a very mature, can-do attitude here. Theydont look at somebody and say they have a handicap orthink of what they cant do. Theyre not going to askwhats wrong with you. Theyre going to see you as,Man, youre one of those guys who rip around themountain on a mono-ski. Thats awesome.
Buckle Up! It maybe a bumpy ride.
Skiing did change my life. I still breathe the same, stillwalk with crutches, even turned 30 three days after I leftthe camp. But skiing changed my life.
I can ski because of the inspiration I found on the moun-tain. People like Joel Strain, from Wichita, KS, who wasin an accident at age 16 and now rides in a wheelchair.Hes been skiing four years and only gets to come oncea yearat least until this year, when hes spending asemester in Fairplay, CO, to ski in Breckenridge.
I dont know that I found skiing, but rather it foundme, Joel said. A group from Wichita contacted meand asked me to go skiing. Once I got here, I loved it.This is awesome. So I just stuck with it.
I can ski because of Orlando Perez, from Atlanta, whohas been skiing three times now. What I like about it isthe freedom that I never had as an able-body, he said.For me, its just about showing people were not dis-abled; were able to do whatever we want to do.
Orlando, who is an incomplete paraplegic, had a tumorin his spinal cord when he fell onto rocks during train-ing in the U.S. Army. He competes on the Puerto Riconational wheelchair basketball team, and also on a teamin Atlanta. His peers suggested he try skiing. Itssomething I never thought I would do, he said. Imfrom Puerto Rico. I can do the beach and all, but Inever thought coming down a mountain would be soexhilarating.
I can ski because of Ron Mayfield, from Virginia Beach,VA, who skied down the mountain standing on two skisfor the first time during the camp. Eleven years ago hewas shot in the head in a hunting accident. He was in amedically-induced coma for weeks, and couldnt speakor walk for four years. Now hes walking without assis-tance, driving and, well, skiing.
I am high on the hog, man, Ron said. My goal was toski. Yesterday was the first time I reached my goal. Godand I are standing there in the mountains with the sunoutside and Im on two skis.
I can ski because of Cory and Andy, both of whombecame my best friends in six hours on the mountain.Theyre two of the seven interns at Challenge Aspenthis winter who do everything from office grunt work toassisting the professional ski instructors. They get aplace to live, enough cash to eat, and a mountain ofsnow.
I can ski because of Robert, a construction/real estateguru by summer, and professional ski instructor by win-ter. Known as The VI Guy, he spends most of his effortsteaching visually impaired skiers. With his patience andguidance, we skied six runs: Funnel Bypass, Assay Hill,Dawdler Headwall, Max Park, Banzai and Velvet Falls the last of which is a more advanced run.
I can ski because of the random mono-skier I saw loadhimself into his ski, push off with his riggers and teardown the mountain all in the time it took me to get oneglove on.
Within 30 minutes of the tumbling crash during my rundown Funnel Bypass, Robert had snagged some papertowels to clean up my face and keep pressure on mynose to stop the bleeding. Doesnt look like it needssewing up. Good thing, because I left my sewing kit athome. Of course, theyve got a stapler inside the liftoperator building, Robert teaseed. I smiled, then weslapped a bandage across the bridge of my nose, pulledthe helmet on and got the riggers in place. No glassesthis time.
Robert pushed my ski over to the lift. Can I get aslow down and a pull back, please? he asked the liftoperator. He and Andy helped load me onto the lift, thepull back was there, and up the mountain we went. Nobetter way to recover from a crash than to hit theslopes again.
by Josh Pate
Youve gotoptions:You can skistandingup, or skisitting down
Skiing is cool:It lets youthrow yourweight around.
Over the years, our daughters have brought homevarious young men to meet the parents. Aftera long, dry spell, our California daughter, Melis-sa, had someone she hoped wed welcome to the fami-ly. She had gotten lucky through one of those .commating sites.
In keeping with her interest in politics, she and Charliemet through an on-line dating service for Democrats.Melissa waxed particularly enthusiastic because he hada serious interest not only in politics, but also in medicalresearch. She assured my husband and I that we could-nt help but like her new beau. But having met some ofher previous prospects, we were less than certain.
When Melissa and Charlie flew from Sacramento Val-ley, CA, to our home in Neptune Beach, FL, in June2007, we discovered that she was absolutely right. Char-lie is gregarious by nature with an optimistic outlook.
For his visit, Charlie had one request: Since hed neverseen the Atlantic Ocean, he wanted to go to the beach.Not an unusual request for our part of the country. Whowouldnt want to bask in the warm, salt air off theAtlantic with its magnet pull of sand and sea, shells andbirds? But this outing required some planning.
For the past 12 years, Charlies had multiple sclerosis.When he and Melissa arrived, he used a cane aroundthe house and a wheelchair for longer excursions.
Right away, I began to research how Charlie couldhave his day at the beach. Id seen the Life Guard Sta-tion at Jacksonville Beach many times, but had neverhad occasion to call on their services.
We found the young lifeguards friendly, polite and eagerto help. I discovered that they do more than guardswimmers and save lives, they also make the beachaccessible to people who are physically challenged bythe very things that make the beach so enticing: sand,uneven surfaces and resistance. Leaving Charlieswheelchair as collateral, we borrowed a beach-goingwheelchair at no charge; it looked much like a cush-ioned deck chair or patio chair with large wheels.
We couldnt have picked a more ideal daysunnywith a cooling breeze off the ocean. Melissa pushedCharlie through the soft sand. After shed gone a shortdistance, a young lifeguard, sporting a beautiful tan,sprinted across the sand, helping her guide the chair tothe beach and firmer ground nearer the water. As Char-lie and Melissa moved up and down the beach togeth-er, his smile was as glorious as the ocean at sunrise. Atone point, he rose and walked part of the way using hiscane.
Spying the beach-going chair theyd abandoned, Iwalked over and sat down. Thats when a gentlemancame up behind me, gripped the chair, and asked if Idlike him to push me to where Melissa and Charlie had
walked. At first I declined, but later accepted the offer. Ifound the beach chair comfortable and the passing viewappealing. The kind stranger asked me to tell him whento stop. It was such a treat that I remarked that he couldjust keep going and going, at which point he informedme that he didnt intend to push me all day! Oh well, allgood things must come to an end, even Melissa andCharlies day at the beach. Still, it was satisfying to seetwo people in love share that moment together, andCharlie said the negative ions off the coast were goodfor his body.
A former Nevada resident, Charlie has since moved inwith Melissa and her 17-year-old daughter, Katie, inSacramento. His two children are still in Nevada,attending college.
Charlie and Melissa are still settling in: Her involve-ment with animal rescue spurs his determination to par-ticipate in various activities-more than might be advis-able at times. On occasion she nearly runs people overas she pushes him in his chair, which can lead to a dirtylook or two. But theyre making it work: She does moreof the physical chores; he handles the finances, whichpleases Melissa beyond words.
Melissa first had an inkling that it could go the distanceduring their initial date. They began e-mailing in thespring of 2006, when he was still living in Nevada. OneSaturday he planned a trip to Sacramento for an adaptive
golf lesson and suggested they get together for lunch.Neither of them had spoken in detail about his MS,which he had simply mentioned in passingand not bynameas his little problem.
We met at a little Chinese restaurant, Melissa recalls,and he was tired from his lesson. He came in using hiscane, and as he made his way to the table, he knocked apotted plant over. He looked at me with a What should Ido? expression, and I mouthed Leave it, gesturing withmy hand that it wasnt important.
That was a pivotal moment for me because in otherrelationships, Melissa says, I had never been asked forguidance in handling a situation. I knew Charlie wouldcontinue to respect my opinions on things. Thats hugefor me. I was impressed too that even though he had tolean on a cane, he had very good posture. We were per-fectly at ease with one another from that first meeting.
A fifth grade teacher with a bent for research, Melissawent on to find out more about his health. Charlies MSis progressive, so they know that further challenges lieahead. They have hope for new advances in treatment,yet they know that life wont be a romp at the beach.The beauty, however, is in all the little moments thatthey get to share together.
by Ruth Coe Chambers
MY MS EXPERIENCE
In 1995, my ophthalmologist told me that I was dying.I went to him about blindness in my left eye causedby my multiple sclerosis. That day he informed me,rather insensitively I might add, that MS is a disease ofthe central nervous system that results in death. I satthere stunned, scared and mad.
I was 37 and married with two young children. I workeddaily. I was buying a home. I played sports, officiatedfootball, skied, paid my taxes, volunteered at my chil-drens grammar school, performed community service,coached youth baseball and soccer.
Fortunately, I was prescribed an intravenous prescrip-tion that restored my eyesight within days. Still, I wasconcerned about the future. So I went back to my neu-rologist for more information, and continued to dogged-ly research this monster that had shown up uninvited atmy door. I discovered that the parts of my brain thatcontrolled facial nerves and jaw muscles had been dam-aged. I joked that I supposed I could live with a droolcup, if necessary.
As I continued to read up on my condition, ask ques-tions and learn as much as I could, I found out that myophthalmologist didnt have his facts straight: MS is notfatal. In fact, I had as great a chance of dying of MS, asI did of getting hit by a Mack truck. That said, MS is
still quite formidable; it can cause blindness, dizziness,loss of cognizant function and mobility, incontinenceand other dastardly ills.
In those early days after I was diagnosed, I was not toldabout management drugs for MS, and thus did not startinjections at that time. Todays medical strategy calls onstarting a management drug as near to ones diagnosisas possible. There remains no cure for MS, only man-agement of it. Fortunately, I went into remission for sev-eral years.
In 2000, MS came barging back in again like a madbull. I began to lose leg mobility. After 10 years as afootball official, I had to resign. I gave up coaching. Iquit skiing. I no longer volunteered in the communityor at my childrens school. I stopped traveling over-seas for work. I was able to hold onto my job, but notmy marriage, though Ive always stayed in touch withmy children.
I began to adjust to the new reality, but refused to sur-render to MS. After conquering my self-inflicted pityparades, I began to learn to cope. I struck the wordcant from my vocabulary, asking myself instead,How can I? I joined my local MS association chapter,and volunteered at its MS 150 Bicycle Fund Raiser. Inthe following months, I purchased a hand cycle, train-ing to ride in the MS 150 the following year, raisingnearly $3,000 for research.
I learned of an adaptive ski program, and the followingyear went back to the slopes. I had the biggest smile atthe ski resort that day. Later, I discovered an adaptivegolf program for people in wheelchairs and othersunable to walk the course. The following year, I golfedfor the first time in a long while. Finally, I traveled toFlorida to see the Atlantic Ocean, and delighted in wig-gling my toes in the sand.
Before the Florida trip, I was cautiously optimistic abouta new disease modifying drug (DMD) that I had beguntaking for MS. Though researchers continue to seek acure for my condition, progress is painfully slow andfilled with numerous almosts. In this case the DMDstarted out strong, but soon lost it effectiveness. In justthree days, I went from striding down the beach holdingmy sweetheart Melissas hand, to staggering down thehallway.
MS changed my life, and Ive had to re-invent my self.Aside from finding alternative approaches to my goals,Ive learned to take pride in the simplest accomplish-ments, whether its pulling myself up the steps in amovie theater, making it through an airport for a flight,or taking a roll and then a stroll down the beach. Thething about life is that there is always a way.
by Charlie Kuhn
He was working as a clerk at the courthouse inBeverly Hills, CA. He had done a bit of acting inthe past, but had nearly put his dreams of star-dom on the shelffor good. She was taking actingclasses. And voice classes. And dance. Every day. But ifthe show business career didnt work out, she had abackup plan. Working at Target.
There are no guarantees in show business. Of course,there are very few guarantees in life at all. But howlong do you wait before you decide its time to cutyour losses? As an actor, when do you make that deci-sion to maybe just enjoy doing a little community the-ater? You knowtake the pressure off yourself. Justhave fun. That moment had not yet arrived for Luke orMichelle. If it had, they would have missed the oppor-tunity of a lifetime.
Performing Arts Studio West (PASW) in Inglewood, CA,has a long track record of developing talent. PASW is a
privately owned, state funded facility opened in 1998 byfounder/director John Paizis. Along with managingdirector Randy Klinenberg, he has assembled a remark-able group of dedicated entertainment industry profes-sionals. The studios team includes actors, coaches,dancers, musicians, singers, writers, directors, technicalpersonnel and managers, and they all have one commongoal. Go straight to the heart of each performer, findtheir passion and set them on the path to fulfilling theirdream. And if this isnt a challenging enough task, eachperformer has a developmental disability. They disabili-ties include cognitive impairment, autism, Down syn-drome, cerebral palsy, seizure disorders and a wide vari-ety of less familiar conditions and syndromes.
The last time ABILITY Magazine featured PerformingArts Studio West, back in July of 2006, their actors hadbooked more than 400 roles in film, television, commer-cial, music video, theater, print ad, training film, voiceover, new media and documentary projects. More
Michelle & Luke got their big break
recently that number exceeded 850. PASW talent hasworked as background performers, featured players, andguest stars for such TV shows as 7th Heaven, CSI:NY,and Cold Case. Most notably, PASW actor Nick Daleyguest starred with Academy Award winning actor HollyHunter in her TNT crime drama, Saving Grace, andPASWs Nicholas Weiland guest starred in the landmark300th episode of ER, working with Oscar nominee PeterFonda.
Luke Zimmerman joined Performing Arts Studio Westin the summer of 2007. He had performed in musicalswhile a student at Beverly Hills High School, andappeared in a small role in a 1990 made-for-televisionfilm, Daughter of the Streets, starring John Stamos. Hewanted to give acting another try and had heard thatPASW might just be the best place to sharpen his skills.
Michelle Marks had been with PASW since 2003. Ini-tially shy and reserved as a performer, she made a
breakthrough as a comedic actress and singer in herappearance in the 2007 PASW multi-media musicalcomedy, The National Cesspool! In this story of thebehind-the-scenes-workings of a tabloid newspaper, sheplayed Loretta Longley, daughter of the Cesspoolsmalevolent owner, Lucinda Longley. PASW staff saw abig future for Marks, if the right opportunity presenteditself. As for Zimmerman, they would wait and see.
Both Luke and Michelle came out of special educationprograms in Los Angeles area public school systems.Although many of these programs are nurturing andcompetent at teaching basic academics and life skills thatyoung people with disabilities need to move into adult-hood, many students and their families ultimately beginto search for programs more tailored to helping the indi-vidual reach personal goals. For some, this means a sta-ble job, perhaps in retail or food service. For others, itmeans an opportunity to explore creative expression.Some choose visual arts; others want to perform. Yet
Luke and Michelle having fun on the set of their new show
while most participants come to Performing Arts StudioWest thinking that it is going to be all fun and games,they soon find out that is not the case.
The atmosphere at Performing Arts Studio West is ener-getic and relatively lighthearted, but classes, training andproductions are a serious matter. The instructors at thestudio work with the actors, musicians, singers anddancers as they would with anyone wanting to work pro-fessionally. They are supportive yet demanding. They askperformers to push beyond their comfort zone, encourag-ing them to dig deeper, mining their talent as if prospect-ing for gold. They strive to instill a sense of self-disci-pline and results that can be derived from hard work.
Professionalism is key because some of the opportuni-ties that come along are high-level. Executive produc-er/writer Brenda Hampton was looking to cast a coupleof actors with disabilities for an episode of her long run-ning hit show 7th Heaven. The storyline included fivecharacters with a variety of developmental disabilities,and she hoped to hire one or two actors with disabilitiesand mix them in with actors without disabilities to fillthe other roles. When PASW talent director, CarmelWynne, learned of the casting session, she arranged forten of the studios actors to read for the five availableroles. 7th Heaven casting director Vicki Huff and asso-ciate Rick Van Noy were so impressed that they filledall five roles with PASW talent.
We had no reason to go elsewhere, said Van Noy. Wehad set up a huge session for [non-disabled] actors toread for the roles, and we ended up canceling them all.These five actors and one additional actor from PASWwere brought back for a second episode that same sea-son. This was just the beginning of a beautiful relation-ship.
According to Paizis, PASWs talent director is a bit of apsychic. He stated, Over the years, Carmel would sayto me, This is the year one of our guys is going to booka supporting role in a film. Or, this year were gettinga guest star role. More often than not, she was right.After successful, high profile bookings of the studiosactors on ER and Saving Grace in 2007, Wynne tossedoff this proclamation: 2008 will be the year we book aseries regular.
In early February of that year, he learned of a projectthat was at the time simply titled, The Untitled BrendaHampton Project. The production was looking to castthe role of an older brother of one of the lead teenagefemale roles. Because PASW actors had previouslyworked for Hampton, Wynne immediately shifted intohigh gear to find out more about the project. She learnedthat Hampton had written the older brother as having adevelopmental disability. PASW had three actors thatWynne felt could handle the demands of a recurringrole. She submitted them immediately. She heard noth-ing for two weeks.
Wynne recalls, At the beginning of the casting processfor this role, we were again faced with challenges as theindustry was [also] looking at actors without disabilitiesto play [this] character. After a month, the casting direc-tor at the production company couldnt find what theywere looking for, so they were open to seeing a few ofour guys. They were delighted to find an actor with adisability who could authentically play this role. Thatactor was PASWs Zimmerman, a youthful looking 28-year-old with Down syndrome. And the Untitled Bren-da Hampton Project became ABC Familys runawayhit, The Secret Life of the American Teenager, starringMolly Ringwald as the mother of a 15 year old whobecomes pregnant.
Right out of the gate, Hampton wanted to make Zim-mermans character, Tom Bowman, an accurate depic-tion of a young man with a disability in his manner,speech, interests and interaction with his family. Shetalked with Zimmerman extensively about his life, hishobbies, his family and his relationships. The characterof Tom is the adopted son of Dr. Marshall Bowman(John Schneider) and his wife Kathleen (Josie Bissett).His younger sister Grace (Megan Park) is the highschools Super-Christian cheerleader. Tom is veryprotective of Grace and has a strong opinion about any-one she is dating.
Hampton and the Secret Lifes team of writers got toknow Zimmerman better. They observed how he inter-acted with the young cast. They saw how he workedwith the shows seasoned actors. They measured hisability as an actor; watched how he followed direc-tion; saw how he came off on screen. Somethingquickly became apparent. He was funny. Zimmermanhad the ability to deliver comic dialogue in a way thatdepicted charm, intention and wit. With this discov-ery, Zimmerman went from originally being signed todo four episodes in season one to appearing in nineepisodes.
As the first season progressed, Zimmerman revealed toHampton that he thought his character should start dat-ing. He was young, he was social, and, boy, did he everwant to get out of the Bowmans living room andkitchen. The first segment of the show that dealt withthis subject was taken from a story PASW directorPaizis told Hampton about a former client with a dis-ability who one night flipped through the yellow pageslooking for companionship. An hour or so later, therewas a knock on his door. When the man opened thedoor, there stood a no-nonsense escort. This potentiallydangerous scenario was woven into part of the showsstoryline in the episode A Slice of Life. Although theseriousness of the situation was not ignored, the scenebecame one of the seasons funniest moments, broughtto life by Zimmerman and the veteran character actress,Jennifer Coolidge (Best in Show, Zoolander) as the big-hearted call girl, Betty.
But what about a real girlfriend for Tom? By the timeepisode twelve rolled around, Hampton knew it wastime. She asked Paizis if he had anyone at the studiowhom they thought could fill the roll. Within days acasting session was scheduled for four young actressesfrom Performing Arts Studio West. PASW acting coach-es, Diana Jordan and Steve Niel, worked with thewomen to set just the right tone for what looked onpaper to be a rather bold and sassy girlfriend namedTammy. Each one of the young women gave excellentreadings, embodying this essence of the character andweaving it into their own unique personality. But it wasthe 22-year-old Michelle Marks who won the part.
Paizis and the rest of the PASW staff found this to be abrilliant and bold choice for several reasons. Both raceand disability had no part in the casting decision. Somemight expect that because Zimmerman has Down syn-drome, casting director Peter Pappas and Hamptonwould look to cast his girlfriend with an actress with thesame syndrome and identifiable physical characteristics.But in fact, Marks is African-American, as attractive asany of the young women on the show and has only mildcerebral palsy. And this choice reflects the reality ofrelationships among adults with disabilities. Its about aconnection. Its about love.
Hampton is so committed to providing opportunities toperformers with developmental disabilities that she will
be honored at Performing Arts Studio Wests first annu-al Awards Banquet and Fund Raiser, A New Level ofSuccess at the Beverly Hilton Hotel on April 30, 2009.She will be joined at this star studded, red carpet eventby fellow honorees, casting director John Levey (ER,The West Wing) and actor Robert David Hall (CSI:Crime Scene Investigation), who have also demonstrat-ed unwavering dedication as advocates for performerswith disabilities.
The success of Zimmerman and Marks is something thatthe PASW staff passionately embraces. Coach SteveNiel says, It makes me proud to see them grow andevolve as actors. Managing director Klinenberg adds,Its been nothing short of amazing to me to see how thelives of these individuals and their families havechanged through what we do here and in their participa-tion in our program.
The Secret Life of Success is no longer a secret.
The Secret Life of the American Teenagerabcfamily.com
Performing Arts Studio West andA New Level of Success
Jayna Altman had no intention of running for MissInternational 2008 until someone suggested it to her.Then she looked into the pageant, liked what it stoodfor, and added it to her very long to-do list. Winningseemed a long shot, until the moment she felt the crownplaced upon her head.
Born severely premature and profoundly deaf, Altman has made her life a testament to what she can do. Her AbilitiesFirst program raises awareness of disabilities and advocates for a world where everyone can reach their full potential.Recently Altman, her childhood friend, Leah Demeter, and ABILITYs Chet Cooper met up in a Fountain Valley, CA,restaurant.
Cooper: Where did you two meet?
Altman: We met when Karen Rothwell-Vivian, an auditory-verbal therapist, developed a support group. There were
six of us: three girls and three boys in the group, grow-ing up together. The group was based in Tustin.
Demeter: Karen, who was our speech therapist, encour-aged us to socialize and talk. She felt that socializingwas an important part of therapy.
Altman: It was really neat having the support group as abase growing up; it was really influential and support-ive. Over the years, Ive noticed in working with kidswho have hearing loss that some have never met anyonelike themselves; they feel outcast, isolated or alone.When you meet someone else with hearing loss, youfeel more accepting of who you are.
Demeter: Yes. Its very difficult for me to be in the nor-mal world with hearing loss, because I feel like Imlocked out of a lot of conversations. At a conference, forinstance, if theres a group of people all talking, I feelleft out. So its nice to have somebody who can relate toall the challenges.
Cooper: You never learned sign language?
Altman: I learned it in college.
Cooper: What was your major in college?
Altman: I got a bachelors in communication from the
University of San Diego, and I graduated with honorsand distinction.
Cooper: And distinction?
Altman: To graduate with distinction, you have to beaccepted into the honors program. On top of that, youhave to do a PhD-level dissertation on a topic withincommunications. For my dissertation, I researched thecommunication levels between auditory verbal therapy,oral therapy, and total communication with childrenwho received cochlear implants at the same age and hadthe same number of years in therapy. I compared thevarious communication levels based on age of implanta-tion, years of therapy, how aggressive the therapy was,speech scores, language scores, and so forth, to deter-mine how successful each of the modes of speech thera-py were. There were so many different aspects to it, andI am glad I facilitated that research.
Cooper: How did you get involved in the Miss Interna-tional pageant?
Altman: There was a director in the program who askedme to consider it about a year ago. So I took a look at itand thought, Sure,why not? I saw it as a hobby atfirst, but also a great way to be able to communicatewith others regarding acceptance of disabilities. Ibelieve each individual in life has different abilities; itsjust that some abilities, or what others view as disabili-ties, are more apparent than others. Some view hearing
Jayna is constantly winning friends andinfluencing people. Very Dale Carnegieof her, you might say.
Leah and Jayna the early years
loss as debilitating, but it really isnt. The most debili-tating thing to have is a negative attitude, or to believethat we cant do something no matter what we havegoing for us in life; that attitude can stop us fromachieving our goals.
The Miss International organization provides a globalplatform to communicate that message through both myprograms: Abilities First and I CAN: Inspiring Confi-dence in our Abilities Now. Both programs focus onearly identification, education and knowledge, in addi-tion to utilizing surrounding support services and a posi-tive attitude to provide a roadmap for success in over-coming physical, mental and medical diagnoses.
I represented my home state as Miss Missouri at thepageant, which was a whirlwind of different events, dif-ferent activities, public speaking and conferences. Ontop of the appearances, I was prepping for the nationalpageant in July 2008.
I was so excited to make top 10 at the national compe-tition. I cant say that I really planned for any successat Miss International. They have whats called an on-stage interview portion where you have to wear aninterview suit onstage. I didnt bring a suit with me
because I didnt think I was going to make top 10. SoMiss New Jersey actually--
Cooper: New Jersey!
Altman: Yes, New Jersey! Interesting enough, MissNew Jersey, Ashli Fivehouse, pulled me aside and said,Youre going to be in the top 10. I said, No, no, Imnot. I cant. I dont have an onstage interview outfit.She smiled at me and said, Youre going to get called,and when you do, you can use mine.
Cooper: Was it a bathing suit?
Altman: (laughs) No. So I said, OK, but I think youregoing to make top 10. You have the perfect wardrobe,youre gorgeous, youre everything one would imaginea beauty pageant queen to be. And she respondedencouragingly, No, no, no. Youre going to make it. Iwas the second one called up in Top 10. I almost passedout, literally. I turned around to look at her, she gives methe thumbs up, and says, Go get it. So I had permis-sion to wear her outfit; I didnt even know what itlooked like! It was just one of those cosmic events andyou do it. It was a cute pink outfit. It looked perfect!
For my onstage interview they asked me, As far as theeducational system, do you think that federal grantsshould be used for individuals with disabilities? I saidsomething along the lines of Yes, I believe wholeheart-edly that federal grants should be used to provide anappropriate education for individuals with disabilities.Congress has committed to providing at least 30 percentof the funds for it, and has yet to fully meet that obliga-tion. I wouldnt be where I am today if it wasnt for theadditional assistance I received in the school system.The question totally threw me for a loop, because I was-nt expecting a political question.
Cooper: Still, you had an opinion to share!
Altman: Of course I had an opinion, because advocatingfor disabilities is my life, and Ive lived with hearingloss since I was a child.
Cooper: So you were cheating?
Altman: (laughs) I dont know if I would necessarilycall it cheating!
The next segment was fashion modeling, and my heelended up getting caught in my dress. Im hopping asIm going on stage, trying to pull my dress out my heel.It was funny.
Cooper: I hate it when that happens!
Altman: (laughs) It was interesting. All I could do waslaugh the entire time I was on stage. After all, what areyou going to do? Again, I was just happy that I madethe top 10, and my thoughts were, This is awesome;this is cool. After all the stages of competition werecomplete, we arrive to the crowning the fourth runnerup is called, who was Miss Oklahoma, then third runnerup was Miss Oregon, and then the second runner up. Ithought if I was going to get anything it would be sec-ond runner up. However, they called Miss Arkansas asthe second runner up.
Cooper: Dont keep me in suspense any longer. Whowon?
Altman: Im getting there. So I think, Its going to beCalifornia; this is awesome! Not that Im negative; Imtrying to be realistic and not get my hopes up. My eyesare closed and Im praying. I didnt hear them call me.The girl next to me grabs me and starts shaking me, andmy reaction is, Oh, yay, who won? And she said,You did! It was mind-numbing.
Cooper: Do you travel as Miss International?
Altman: Yes, year-round to the states and some interna-tional travel, working with a lot of charities whose focusis awareness of disabilities and serving individuals withvarious disabilities. I also do a lot of public speaking on
educating the public on awareness of disabilities. I serveas a spokesperson for both the Special Olympics andAbility Beyond Disability. Both organizations serveindividuals with a variety of disabilities, primarily intel-lectual or cognitive disabilities.
Cooper: Do you have a cochlear implant?
Altman: No. I have hearing aids. I wear either mybehind-the-ear DaVinci PxPs or the new in-the-canal,Destiny 1200, both fitted by Starkey. Im a candidate fora cochlear implant, but I decided against it for the timebeing.
Cooper: I see that you have a Blackberry.
Altman: Yes, I do. I call it my Crackberry.
Cooper: So because of the Blackberry you can getemail quickly. Do you do email more than you send textmessages?
Altman: A combination of both. Nowadays with thetechnology, it doesnt matter whether or not you have ahearing loss. Everybody seems to be into email and tex-ting, rather than picking up the phone and calling some-one.
Cooper: Why arent you wearing your crown?
Altman: Its getting fixed.
Cooper: You wore it out?
Altman: (laughs) No, I was signing the national anthemfor a St. Louis Cardinals baseball game. It was for the15th anniversary of Deaf Awareness in Missouri. I hadbeen wearing the crown but had taken it off, when anexcited baseball fan accidentally hit it and one of thepieces broke off.
Cooper: Why Missouri?
Altman: I was accepted into its Washington UniversitySchool of Medicine for my doctorate in audiology.
Cooper: Have you visited Missouris caves?
Altman: Yes, they have a lot of them, like the JesseJames caves.
Cooper: Was it his hide out?
Altman: I just know that theyre called the Jesse Jamescaves. They are really cool.
Cooper: Most of them are underground?
Altman: (laughs) Yes, and weve got the Arch.
Cooper: Have you been in the Arch?
Altman: I love the Arch!
Cooper: I dont like heights, and Im a little claustro-phobic, but going in there was cool.
Altman: Wasnt it creepy when you go up the little ele-vator to the top of the Arch and its creaking the entireway?
Cooper: It was strange. I thought, I cant believe theyreletting us do this! And then were looking straight down.
Altman: But on a clear day you can see so far out.
Demeter: What are you doing now, Jayna? I cant keepup with you with your busy schedule.
Altman: Im real excited because we have the WorldWinter Games for the Special Olympics in Boise, Idahoin February. They have a Global Youth Summit confer-ence, which is aimed at educating youth on differentkinds of disability, especially cognitive/intellectual dis-abilities. It focuses on how were going to transformthe world; how our youth can play a central role in theworldwide community to change the perception of
cognitive disabilities; and, how we can begin to create asense of inclusion.
Demeter: Can we see your goal sheet?
Cooper: What is a goal sheet?
Altman: Heres my little goal bag with the big plan.Last year I wrote out my 2008 goals, in terms of what Iwant to accomplish that year. I still have to do my 2009goals.
Cooper: Number one, meet Chet Cooper.
Altman: Meet Chet Cooper, whoo-hoo! (laughs) I writeout my big goals, and then I write out smaller goalsunderneath it to organize how I am going to accomplishthe bigger goal. I carry my goal sheet with me, so Imalways reminded of what I want to accomplish that year.
Demeter: I admire that because it shows youre persis-tent and determined.
Cooper: [looks at sheet] Which of these things have youdone?
Altman: I auditioned for the Rams Cheerleaders, but I
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Because shes deafshe never heard people tellher it was impossible, said Jim Fiolek as hestood alongside the motocross track in Lake Elsi-nore, CA, watching his daughter, Ashley, ride. And yet,something tells us that it wouldnt have slowed herdown even if she had heard.
By the age of 17, Ashley had already won 13 AmateurYouth Championships, been featured in Rolling Stoneand the New York Times, and was the 2004 AmericaMotorcycle Association (AMA) Youth Motocrosser ofthe Year. Impressing even industry veterans, Ashleyraised her own bar when she won the overall title at theWomens Motocross Association Championship in herrookie year. She also became the first deaf person towin an American Motocross Association NationalChampionship.
Nicknamed Rude Peabecause I never ride like asweet peaAshley is bringing womens motocrossracing out of the shadows of a traditionally male-domi-nated sport. As the first woman ever to grace the coverof the industrys popular TransWorld Motocross maga-zine, she has her sights set on changing the face of
womens motocross by establishing the expectation thatsponsors treat her with the same professionalism as hermale peers. Shes gotten their attention.
ABILITYs Chet Cooper, a pseudo-motocross rider,recently caught up with Ashley and her father while thetwo were in California testing her new Honda. A fiercecompetitor on the track, her persona off the trackreplete with an infectious smile and a lot of laughterisequally engaging. Through her father, who served as herinterpreter, Ashley talks about the pros and cons ofbeing a young rider and deaf athlete, about her educa-tion, and about whom she really wants to beat on thetrack!
Chet Cooper: Youve become a huge name in motocrossin a relatively short period. How long have you beenriding?
Ashley Fiolek: Almost 11 years now. Its been a longtime.
Cooper: And youre 12 now?
Fiolek:(laughter) I just turned 18.
Cooper: Im an amateur, as evident by my bandages,(Ashley shows off a few of her war wounds, too) but I dofollow the sport a bit. Congratulations on your newrelationship with Honda!
Fiolek: Thanks! Its very cool. Im now part of the
Honda Red Bull Racing teamthe first girl to be on afactory team. Its really awesome to have an opportunityto win more championships with them. Its so importantfor girls to know that you can dream about somethingand, if youre willing to work hard, your dreams cancome true, just like mine did.
Cooper: How does being deaf affect the sport for you?
Fiolek: I dont think that because Im deaf I only havedisadvantages. There are certainly advantages, too. Ifpeople are behind me, it doesnt bother me. Theres nopressure from hearing their bikes, although I can seetheir shadows. The disadvantage is having to hold myline. I dont want to switch lines abruptly because Illtake somebody out. It all evens out.
Cooper: I can see how it would work both ways. How itcan be a little bit of a disadvantage to keep your line,because youd have to frequently turn to see if some-ones right behind you.
(Ashleys dad takes a brief r