ABILITY Magazine - Sandra Lee by ABILITY Magazine

VOLUME 2008 SANDRA LEE APR/MAY

THE VOICE OF OVER 50 MILLION AMERICANS

US $4.99 Volume 2008 Sandra Lee Apr/May MAGAZINE

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E DITOR - IN -C HIEF Chet Cooper

M ANAGING E DITOR Pamela K. Johnson

M ANAGING H EALTH E DITOR E. Thomas Chappell, MD

H EALTH E DITORS

Gillian Friedman, MD Larry Goldstein, MD Natalia Ryndin, MD

C ONTRIBUTING S ENATOR U.S. Sen. Tom Harkin (D-IA)

E DITORS

GREEN PAGES — Living With Ed, Fair Trade Goodies

BEST PRACTICES — Companies Doing It Right

STARBUCKS — A New Perspective on Diversity

PEPSICO — Effervescent Corporate Culture

SKIING UTAH — Everyone Gets to the Mountaintop

ACCESSIBLE ALASKA — Cruising the Wilderness

DRLC — Removing Barriers to Education

Extremity Games

HEADLINES — NY’s New Gov, Dancing with Marlee, Errata CVS

Dahvi Fischer Renne Gardner Sonnie Gutierrez Eve Hill, JD Glenn Lockhart Josh Pate Denise Riccobon, RN Maya Sabatello, PhD, JD Romney Snyder Jane Wollman Rusoff

C ONTRIBUTING W RITERS

How big is your brain? p.36

Paralympic Games Beijing

Courtney Gale Linda Boone Hunt Gale Kamen, PhD Laurance Johnston, PhD Andrea Kardonsky Deborah Max Myles Mellor - Crossword Puzzle Paula Pearlman, JD Richard Pimentel Allen Rucker Kristen McCarthy Thomas Betsy Valnes

H UMOR W RITERS

George Covington, JD Jeff Charlebois Gene Feldman, JD

OUCH! — The First in a Series on Managing Pain

SENATOR HARKIN — Voting Access for All

BIG BRAIN — Does Size Matter?

SANDRA LEE — How to Cook with Rheumatoid Arthritis

ALLEN RUCKER — Ahhh! A Trip to the Spa

ROHAN MURPHY — Paralympic Powerhouse

WALTER REED — Performing for the Troops

DIRECTOR OF BUSINESS AFFAIRS

CROSSWORD PUZZLE — Guess Your Best

MARKETING/PROMOTIONS

GEORGE COVINGTON — A Great Judge of Black Eye Peas

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P HOTOGRAPHY Ski Utah Chris Apedaile Seen “Bob’s House”? p.18

T RANSCRIPTIONIST Sandy Adler

John Noble, JD

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PUBLIC RELATIONS JSPR Utah? Me tah! p.22

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EDITORIAL

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laws and not individuals. Today we can be proud of our democracy. There is work to be done. There’s trust that needs to be restored. There are issues that need to be addressed. If we are going to build a viable future for New York, we are going to have to help single mothers who have two jobs. We are going to have to give children better schools, and families who don’t have health care some redress.

CALL HIM GOVERNOR:

David Paterson Steps Up

n the wake of Elliot Spitzer’s resignation, New York inaugurated its first black head of state, David Paterson. He’s the country’s first governor who is legally blind and the third black governor of any state since the Reconstruction era. Born in Brooklyn in 1954, he is the son of Basil, a former State Senator who later served as Deputy Mayor and New York’s Secretary of State.

I learned about government right here in this Legislature. I studied the same issues and had the same experiences, hopes and frustrations as so many other New Yorkers. I am chagrined at the high cost of education for my family. And the prohibitive price of health care. I have talked to New Yorkers for decades about the crumbling upstate economy, the crush of property taxes and the lack of affordable housing. These are issues that we will continue to focus on and address, but we can do more.

An early childhood infection left David Paterson with limited vision. He went on to graduate from Columbia University and Hofstra Law School, has completed a New York Marathon and is an adjunct professor at Columbia. He and wife, Michelle, have a son, Alex, 13, and a daughter, Ashley, 19, from her previous marriage. Here is an excerpt from his recent inauguration speech: ————————

I have a vision for New York. It’s a New York where achievement is developed only from hard work, where doors are always open and where anyone can achieve no matter where they live.

I have worked most of my life for New Yorkers and fought for New Yorkers. I believe that if we stand together, our collective talent will bring us to a better period.

he last time I was in this chamber I was gaveling in for the State of the State, and Speaker Silver brought me in here to practice so I didn’t destroy anything in our first year. But in our second year, I said, ‘Don’t bother, I know how to do this.’ Apparently, I was about to bring the gavel down on a glass, like this one. The speaker at the last second grabbed the gavel away from me and told me in his own inimitable way, I will not allow you to turn the State of the State into a Jewish wedding. In so many ways, we woke this morning to a not-soordinary day. But in one way, we woke this morning to a New York dawn that is like every other one that came before it. For today, like we always do, we move forward. Of course, I never expected to have the honor of serving as governor of New York State. This transition is an historic message to the world that we live among the same values that we profess, and that we are a government of

Let us, right here and now, grab the unusual opportunities that circumstance has handed us today, and put personal politics, party advantage and power struggles aside in favor of service in the interests of the people.

We don’t know the path yet. But that’s because we haven’t blazed the trail. And I think you all know that I know a little bit about finding one’s way through the dark. Let me tell you a little about myself. I was born in the borough of Brooklyn. I was educated on Long Island. Harlem is my home. This is where I learned love for family and appreciation for community. I have confronted the prejudice of race and challenged the issues of my own disability. I have served in government for over two decades. I stand willing and able to lead this state to a brighter future and a better tomorrow. Let me reintroduce myself. I am David Paterson and I am the governor of New York State. www.ny.gov/governor

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NEW ACA CAMP Bigger and Better

T THE MUSIC WITHIN Matlin’s Got the Moves

o launch her Dancing With the Stars career, contestant Marlee Matlin had been training several hours a day at this writing. Though none of this year’s batch of hopefuls had ever danced in the pro ranks, she had the additional challenge of being deaf. But she’s said that has not been a problem. Though she’s never heard a single music note, she’s expected to step, twirl, dip, smile, clap, spin and jump in time with the rhythm. For that, she relies on professional partner, Fabian Sanchez. ‘’He’s my music,’’ she says. Some of the dances Sanchez modifies a bit so that he and Matlin are in more physical and/or visual contact. But he maintains that ‘’she’s got a natural rhythm and is on time every single time.’’ Sanchez, a dance instructor from Birmingham, AL, suggests that Matlin might be even easier to train than many who can hear “because she’s not trying to follow the rhythm on her own.’’ Matlin is an Emmy-nominated TV vet who won the Academy Award for best actress in 1986’s Children of a Lesser God. She is also a mother of four, including her inspiration, 12-year-old daughter, Sara, a hip-hop dancer and fan of the show. ‘’I just want to be the cool mom,’’ Matlin says about competing. Her co-stars this season include radio host Adam Carolla, magician Penn Jillette, pro football player Jason Taylor, tennis champ Monica Seles, Olympic skater Kristi Yamaguchi, R&B singer Mario and actors Steve Guttenberg, Shannon Elizabeth, Christian de la Fuente, Priscilla Presley and Marissa Jaret Winokur. (Each week, someone gets voted off the show, until they winnow down to a winner.) Executive producer Conrad Green says assembling a diverse cast contributes to the show’s success. His team looks for contestants of various ages, sizes, abilities and professional pursuits. Heather Mills, who uses a prosthetic leg, lasted seven weeks last season. ‘’It’s incumbent on everyone in television to try to open up television to people with disabilities,’’says Green. www.abc.go.com 8

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he Amputee Coalition of America (ACA) Summer Youth Camp marks its ninth year with a move to Clarksville, OH. The new location accommodates even more children who have limb loss or limb difference than was possible in its previous, Warm Springs, GA, home. The camp will be held July 20-24 with kids from 10 to 16 enjoying horseback riding, swimming, dancing, fishing and more. They’ll also participate in team-building activities, which will provide an opportunity to learn from peers and junior counselors who are also amputees. The Joy Outdoor Education Center of Clarksville serves as the host of this years’ event. There are an estimated 70,000 children living with limb loss in the US, according to ACA, a non-profit organization that works for men and women who have experienced an amputation or are born with limb differences “This will be the second summer that we have a Junior Counselor Program, said Paddy Rossbach, ACA president and CEO. The six counselors are former campers; they are now 17 and 18 and have come back to volunteer. The camp fee is $500 per child. However, no one will be excluded because of a family’s inability to pay, Rossbach said. Fee waiver forms are available. For an application go to: http://www.amputee-coalition.org/youth_camp_camper_2008.pdf For more information on ACA visit: http://www.amputee-coalition.org

TOY TEACHES KIDS:

Do the Right Thing

oodwill Industries International and Learning Curve Brands have joined forces to create a 12room dollhouse that promotes caring and sharing, good manners, responsibility around the house and more. Coming this summer to a store near you, the Caring Corners Mrs. Goodbee Interactive Dollhouse will cost about $80. As part of the experience, children are encouraged to fill Mrs. Goodbee’s “Carton of Caring” (the box that the dollhouse comes in) with gently-used clothing and toys they no longer need and donate them to Goodwill, a network of 184 independent, community-based organizations in the U.S., Canada and 14 other countries. The clothing and toys will be sold in its stores, and the proceeds will help fund the organization’s job training programs in the various communities it serves. “Donating the things you no longer need is a form of charity in which anyone, regardless of age, can participate,” says George W. Kessinger, president and CEO of Goodwill Industries International. “Together, parents

CAPTIONED CONVERSATIONS and children can explore how their donations go toward putting people to work and building stronger communities. “Children can feel good because their donations will help people earn a paycheck, which helps them support themselves and their families,” says Kessinger. Goodwill, which has 2,100 retail stores nationwide, also provides employment services, job placement opportunities and post-employment support.

Sprint Adds New Bells & Whistles

new free web-based service from Sprint WebCapTel(r) allows a person who can speak but has challenges hearing over the phone to read wordfor-word captions of their calls on a web browser. This new service is expected to help an estimated 23 million Americans with hearing loss, who may face challenges hearing over the telephone.

Group Underestimates Risk

“We are always looking for ways to offer unique and easy user experiences for our customers. This new solution from Sprint will offer the hard-of-hearing community the ability to enjoy the benefits of a natural phone conversation by accessing real-time web-based captions,” says Mike Ligas, director of Sprint Relay.

ost Baby Boomers underestimate their risk of acquiring a disability that would cause them to miss work for an extended period of time, according to a new survey conducted by Harris Interactive on behalf of America’s Health Insurance Plans (AHIP). The study also found that Baby Boomers are unaware of the most common causes of disability and don’t seem to be too concerned about them.

With the new service, users can make and receive calls on their own telephone, cell phone, land-line or even an amplified phone. During the call, if they have difficulty hearing what is being said, they can log into a dedicated website and read written captions of everything their caller says. Captions appear virtually at the same time as the person speaks, allowing users to enjoy a natural telephone conversation.

This lack of awareness presents a significant threat to their continued financial security, said Karen Ignagni, president and CEO of AHIP. “When individuals underestimate their risk of disability, they are less likely to protect their income and are more vulnerable to the financial hardship that a disability can cause.”

This new service is available almost anywhere with a phone and internet access on a computer. Even using amplified phones, the WebCapTel(r) will capture the audio of the person speaking to the user and will change spoken sounds into words that can be read. When displayed on a web browser, the user can change the font size, color and even background. When a call is completed, the user can save the captioned conversation for later review, allowing the user to concentrate on being involved in the conversation.

www.shopgoodwill.com www.learningcurve.com

BOOMERS VULNERABLE

More than a third of Baby Boomers think the chances of becoming disabled due to illness or injury is five percent or less, a slight majority think the chances are 10 percent or less, and two-thirds think the chances are 20 percent or less. In reality, a worker has a 30 percent chance of acquiring a disabling injury or illness causing him or her to miss three or more months of work before reaching retirement, according to the Social Security Administration. The survey also found that nearly half (47 percent) of Baby Boomers say they are not too concerned about the prospect of a disabling injury or illness. One of the reasons Boomers underestimate their risk is the mistaken belief that injuries cause more disabilities than illnesses. According to the survey, Boomers believe the most common causes of disability are back, muscle or joint problems (26 percent), injuries on the job (18 percent) and injuries off the job (16 percent). However, research shows that the most common causes of disability are illnesses such as cancer, heart disease and diabetes. The survey found that most Baby Boomers accurately believe they are more likely to acquire a disability than premature death and that most disabilities occur outside of the workplace. For more on the survey findings go to: http://www.ahip.org/content/default.aspx?docid=22626

“WebCapTel puts people with hearing loss back in control of their own telephone conversations—any time, anywhere—by capitalizing on the convenience and prevalence of the Internet,” states Robert Engelke, president of Ultratec, Inc., the company that developed CapTel technology. “It gives people with hearing loss the confidence to rely on their telephones again, leveling the playing field for professional opportunities, in social situations, and in matters of personal safety.” The service is free to Sprint customers anywhere in the United States and within the US territories. However, calls to or from international locations, such as Canada or Mexico, are not applicable. To learn more visit: www.sprintcaptel.com

Correction: In our last issue, we misquoted CVS’s Eileen Howard Dunn. We wrote that her programs aim to help children “learn, play and feed,” when she actually said that they are designed to help them “learn, play and succeed.” The error occurred in transcription. ABILITY 9

YOU, TOO, CAN LIVE WITH ED

ometimes I wonder how my husband puts up with some of my greenie antics (like pouring a hundred pounds of concrete into the middle of the backyard lawn so I can have an outdoor clothesline), but when we sit back and watch Living With Ed, I feel totally vindicated and give him a good punch in the arm, saying, “See??? I could be doing all this stuff to the house!” If you haven’t caught an episode of this HGTV show, you’re missing out on some serious eco-cool, not to mention quite a few laughs). “Hosted” by long-time environmentalist/uber-greenie Ed Begley, Jr. and his wife of 13 years, Rachelle Carson, Living With Ed is sort of The Odd Couple meets Green Acres meets Lifestyles of the Rich Yet Responsible. The show follows Begley and Carson around as he works to save the world and she, while also concerned about global warming and the like, craves a really, really long shower once in a while. Their show, now in its second season, is full of great information and quick green tips. Even better, Living With Ed: Season 1 is now out on DVD. So I—um, you—can kick it with the Begley’s anytime you’d like! www.livingwithed.net www.hgtv.com

DISH DOODIE It’s more a matter of habit than anything. We clear the table, rinse the dishes and plop them into the dishwasher. Isn’t that akin to hosing ourselves down before we get into the shower? Fact is, unless your dishwasher is ancient, rinsing dishes, glasses and utensils is unnecessary, not to mention wasteful. Simply scrape off any particles with a wet sponge and load away! Next best: If you must rinse your dishes (either because you had a particularly messy meal or you run your washer infrequently), you can fill the sink with water once and give your dishes a quick dip, rather than running the faucet. Also, you know that sprayer do-hickey that tends to sit idly by while you rinse your dishes with water from the faucet? Give it a go! Like a showerhead, kitchen sprayers break the water stream into tiny droplets. According to the Environmental Protection Agency, spray taps use 50 percent to 90 percent less water to rinse than when you use the faucet. The other thing to consider is that the hours following dinner tend to be high-demand energy usage times. You can cut energy costs by running the dishwasher later in the evening, perhaps before you turn in at night. Also, half-full dish loads are a huge waste of water and energy, as your dishwasher uses the same amount no matter how much is in it. So be sure to load it up before you hit “start” and don’t forget to put the dry setting to “energy-saver.” Every penny counts! CHILL OUT Spring has sprung, and the summer months are edging closer. If you’re lucky enough to have an air conditioner (I, unfortunately, am not), you need 10

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to remember that—just like your furnace—it needs some yearly TLC. Be sure to check out your unit’s air filters once a month and clean or replace filters, as necessary. Keeping filters clean can cut energy consumption by 5 percent to 15 percent. Also, make sure that the drain channels and coils on outdoor units are not clogged. To keep cooling costs down, run the forced-air system’s fan—not the air conditioner—to maintain a comfortable temperature. Simply flip the thermostat to “fan only” to recycle air throughout the house. Also, while I can only guess (pout) how tempting it must be to crank the A/C when it’s 90-plus degrees outside, keep the thermostat at 78 degrees when you’re home. When no one will be there, set the thermostat at 85 degrees. That way, you reduce the need for air conditioning, save energy and have extra cash on hand for your Labor Day barbecue. Lastly, if you have ceiling or other fans, turn them on. The blowing air can make you feel five degrees cooler. Fans also use a lot less electricity than air conditioners! AHHHH... L’AMOUR... Want to show your true love that your intentions are pure and make up for whatever you have or haven’t done lately? While you’re at it, why not be a little— you know—responsible while kissing your sweetie’s derriere? SUSTAINABLE CHOCOLATE Organic chocolate is produced without most synthetic pesticides and fertilizers or genetic modification. Growers also emphasize the use of renewable resources and conserving soil and water to enhance environmental quality. Search for organic chocolate online or look for options at natural and gourmet grocery stores. Fair Trade chocolate is produced by farmers and workers in developing nations who receive a fair price for their product. Trade is done directly between farmerowned cooperatives and buyers. Crops are grown using soil and water conservation measures that restrict the use of harmful pesticides. Rainforest Alliance chocolate is grown using integrated pest-management systems that limit the use of pesticides and fertilizers. Crops are grown using water-, soiland wildlife-habitat conservation measures. Farm laborers are paid salaries and benefits equal to or greater than the legal minimum wage of their countries.

SUSTAINABLE FLOWERS Organic flowers are grown without most synthetic pesticides and fertilizers or genetic modification. Growers also emphasize the use of renewable resources and conserving soil and water to enhance environmental quality. Veriflora flowers are grown using water-, soil-, and habitat-conservation measures. The use of pesticides and fertilizers is also restricted. Farm laborers are compensated and protected according to international, national or local standards. As with the chocolates, Fair Trade flowers are produced by farmers and workers in developing nations who receive a fair price for their product, and trade is direct. Soil and water conservation measures restrict the use of pesticides. Biodynamic flowers are grown without the use of synthetic pesticides, fertilizers, genetic engineering or animal by-products. Additionally, flowers may not be grown in areas subject to strong electromagnetic fields. If you live in a temperate area, buying local flowers, which may or may not be certified, is another option. To find out if there’s a seller near you, check Local Harvest, a searchable database of local agricultural products. by Kristen McCarthy Thomas To learn more about these labels, visit the eco labels www.greenerchoices.org For Chocolate: www.tranfairusa.org www.rainforest-alliance.org www.sustainabletable.org/features/articles/chocolate For Flowers: www.OrganicBouquet.com www.harmsvineyardsandlavenderfields.com www.DiamondOrganics.com www.veriflora.com www.1800flowers.com

Kristen McCarthy Thomas is a public relations specialist with an integrated marketing communications company in Southern California. She leads the company’s Environmental and Sustainability Task Forces, and helps the company’s 70-plus associates “green up.” Kristen writes the www.just2hands.blogspot.com, which we’ll occasionally excerpt here. She is writing a book on how parents can reduce their family’s environmental footprint through inexpensive (if not money-saving), easy-to-understand steps, as well as how to pass the torch of environmentalism to the next generation, not only by action, but example. ABILITY 11

Sometimes I make fun of something I’ve read in the news. For instance, a quadriplegic was recently thrown out of his wheelchair by a Florida cop. This is an excerpt from my humor blog about it: Cops and Drops I guess by now we’ve all seen the video of the cop dumping the quad out of the wheelchair. This brought back fond memories of my first marriage. “Yes dear, I’ll wash your car. Just please, don’t do that wheelbarrow thing to me again.”

sense of humor opens doors and welcomes people into your life. It breaks down barriers and can even lead to a date. When I see someone I’m attracted to, I go up to her, bang my wheelchair into her shin and then run over her feet. I roll away quickly, but the back of my chair reads, HOW AM I DRIVING? CALL (626) 446-77... If she calls, I know she has a sense of humor. Laughter puts people at ease, especially those who may be uncomfortable interacting with a person who has a disability. (And we’ve all met those types!) When I make fun of myself, others realize that I am comfortable in my own skin, and they’re more likely to loosen up. I might lead off with something like: “Every time I go out with my friends, they put my wheelchair in the front seat and me in the trunk. What’s up with that?” Then I might follow up with, “A lot of people ask me if sex is still the same as it was before my injury. I say, ‘Hell no, prices have skyrocketed!’ “ I have been a professional “sit down” comedian for more than 20 years, and part of my routine deals with disability-related issues. When people come up to me after a show and want to tell me a joke rather than ask what happened to me, I know they’ve looked past my disability and focused on my humor. Humor also helps get me through the day, which is more challenging for those of us who are disabled. Some unforeseen headache often arises: I fall out of my wheelchair; I get a flat tire; my seat cushion gets punctured… It’s not pretty, but then again neither is Tori Spelling, and somehow we’ve managed to put up with her all these years Humor is important in a relationship, too. It’s funny to look at the other person’s face when you’re making love—or in the mirror if you’re doing it solo. Humor is the backbone of a relationship, and if you don’t have a backbone then you’re going to run into trouble. Go ahead have some fun. If your wife gets mad at you, cut her hair while she’s sleeping. That stuff cracks me up. Really, it’s good, clean fun for the whole family.

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Anyway, what was that police officer clown thinking? This particular clown was a woman, FYI. That’s right, a policewoman. So this witch-in-blue tosses this fellow on the ground. What for? It wasn’t like he banged her in the shin and asked her for a date. The video was, to say the least, disturbing. I thought I was watching an old Andy Griffith episode where Deputy Fife pulls up his pants and says in his high pitched voice, “Ange, you can’t trust these gimps in wheelchairs; they’re mighty sneaky. What we got here is a faker!” Next thing you know, old Barney dumps him on the floor, next to Otis, while Goober stands wideeyed at the door singing out, “Goooolly!” That policewoman was an animal. Where did this pig get the idea to act like a jackass? I haven’t read the Americans With Disabilities Act from cover to cover— though I’m sure it’s a page-turner—but I’ve got a crazy suspicion that chucking people out of their wheelchairs is a no-no. Maybe there’s some new wacky law that says you can only read someone their rights if they’re floundering on the floor with three broken ribs. Come on, you can’t treat human beings like that—only family. I’m curious to hear her defense. Did she recently switch to decaf? Did she need an extra set of wheels. I can hear her now: “Well a call came in for a 402 in progress, and we were out of squad cars, so I figured I could borrow the wheelchair and make a siren sound with my mouth while I pursued the robber. I figured the gimp could chill on the filthy station floor ‘til I got back in a couple of hours.” Hey Dirty Rotten Copper, we’ve got murderers, rapists and drug dealers ruining our neighborhoods. Chase after them! You should beat down the Crips instead of the cripples. Starsky and Hutch would both be ashamed of you. That’s all for now folks. Please don’t forget to tip your waitress on the way out. “Ham on a Roll”

by Jeff Charlebois

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COOL BEANS

thing is totally accessible, and in your own language, it makes a big difference.

n the retail side, Starbucks is known for making a tasty cup of joe, teaching us a sprinkling of Italian and retailing everything from mugs to music to books. On the far side of the counter, they get kudos for working in harmony with the world’s coffee growers, as well as for being an employee-friendly corporation. (How ‘bout that health insurance for part-timers!)

Cooper: That’s true. Royal Caribbean even taught their staff some sign language. There were a lot of challenges because there were many languages on that ship. As you know, there’s American Sign Language, Universal Sign Language and several others. It was fascinating to watch and try to communicate, across the different language groups.

Recently we caught up with the Seattle-based company’s Laura Swapp and Marthalee Galeota. Swapp is the global director of Diversity and Inclusion, while Galeota is the program manager of Accessibility. We spoke with them about Starbuck’s expansive concept of diversity.

Down the line, do you think of having your partners take sign language classes internally, so they can respond and communicate to partners or customers who sign?

Diversity Brews at Starbucks

Chet Cooper: Let’s talk about what you might consider “best practices” for Starbucks. Marthalee Galeota: For us, the key thing is not to look at disability or accessibility as a stand-alone, but to look at it more broadly throughout the entire company. If we design a product, a program, a DVD or a service, then we use universal design (barrier-free) approaches and think through the different aspects of disability early in the game. That way we can bump up the company’s ability to engage a broader scope of people, whether it’s customers or employees. We’ve also set the stage for someone who might be aging or in an accident or otherwise become disabled-temporarily or permanently-to have a place that is comfortable and accessible. Laura Swapp: One of our guiding principles is to embrace diversity as an essential component in the way we do business. We define diversity as encompassing all the things that would touch equal opportunity, inclusion or accessibility. And so we build accessibility into the platform of our larger diversity efforts. Cooper: So you’re tapping a model similar to what’s being used in the housing market, where they talk about people being able to age in place. But you’re using universal design in an even broader context for both employees and customers, right?

Galeota: At a lot of our stores where there are deaf baristas or deaf store managers, some partners do get intrigued and take classes on their own. Sometimes a local group will teach sign language. In Canada, we connected with the Canadian Helen Keller Center, and they actually provided classes for our people. On occasion customers have come in, and when they realized that their barista was deaf, they’ve gone home, gone online and learned how to sign the name of their drink. Then they’ve come back and signed it to their barista. So definitely, the culture and language is one that we support and encourage people to understand on a deeper level. I do some of the interpreting here at Starbucks and coordinate our interpreters. Cooper: I’m not sure if you are aware of this, but with Canadian Sign Language, they have to add an “Eh?” to the end of everything. (laughter) Galeota: We also have a service-animal policy and classes on accessibility and disability here at our building, including accommodating members of the deaf community. We’ve made sure that our video and Internet news broadcasts both have closed captioning. We did a pilot in one of the stores using Braille and large print menus, so we’re looking at a variety of things we can do.

Galeota: Yes. It’s a more holistic approach. I’d also add that for many people who are deaf or identify with the deaf community, we’re exploring a deaf-friendly work environment, and how we might promote that. So when we have multicultural marketing or a multicultural initiative, we want to make sure that we also include deaf people within it.

The other thing that we have here in this building is a network of partners who have identified themselves as having a disability or who want to be an ally for accessibility. They’ve gotten together and identified themselves as the Starbucks Access Alliance to help guide the company around issues relating to disability and accessibility.

Cooper: That’s interesting. I was recently invited on a trip on the largest cruise ship in the world. The voyage was chartered, and nearly everyone on the ship was deaf.

Cooper: Starbucks appears to be doing more than many other companies that we’ve spoken with. How are you so effective?

Galeota: I had friends who went on that cruise. They loved it. You know, when you’re in a place where every-

Swapp: Marthalee has brought us a lot of expertise and served as the architect of our plan. I think we’re also a

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Cooper: Given what you’ve learned, what is Starbucks doing that you would like to see other companies do, and how can one expand these concepts from the local to the global? Swapp: Again, a holistic approach is very important. So we’re always focused on the policies, standards and guidelines inside our company that support a disabilityfriendly environment. Universal Design by Tony Gale

bit different, because, as we mentioned earlier, we consider accessibility a part of diversity. Cooper: Right. For years there’s been a push by advocates to remind companies that disability should be included in diversity. Sometimes they think only in terms of certain accommodations when a person is hired, but not much beyond that. So was that actually a part of the charter of the company when it was founded? Swapp: No, diversity became one of the guiding principles after the company had been in existence for a while. But we now see it as a critical component to our work. Chet Cooper: Are you involved with the Business Leadership Networks (BLNs) in your area? Marthalee Galeota: Yes, we’re new board members with the U.S. BLN. Cooper: Do you know what your role will be? Laura Swapp: We’re still figuring that out. We’re prioritizing the national relationship and figuring out what we’re doing locally. Our strategic partnership initiative defines what organizations we engage with, and how we bring them into partnership with the Starbucks family at multiple touch points. So this is one of the relationships within that program. We will continue to look at how we partner with various communities: African-American, Lesbian/Gay/Bi/ Transgender, Latino, disability… There are other organizations that we’ve worked with or will work with to determine how we move forward in this phase. Marthalee will identify what the multiple touch points will be, and how we will roll those out. Obviously, headquarters is just one small piece of our world, and it’s really more about how we engage our field operations in these partnerships.

We’re inquiring about education and awareness opportunities. For us that could be offering specific courses such as disability etiquette, deaf-friendly culture or integration into other core areas that we believe would enhance awareness. Marthalee reviews all the marketing that leaves the building from an accessibility standpoint. So, what we would say to other companies is to recognize that increasing accessibility and diversity require pulling multiple triggers. Cooper: You just had a shift in leadership at the top. How does that affect your division? Swapp: We feel really optimistic about the support for diversity work with this leadership team. Cooper: Is there anything else that you wanted to talk about or address? Galeota: Just this year, (chairman and CEO) Howard Shultz participated in Great Hires, a video that showcases the benefit of employing individuals with significant disabilities. The project was produced by the King County developmental disabilities group, King 5 TV and the Washington (State) Initiative for Supportive Employment. The video highlighted three different companies, including Starbucks, which are reaching out to people with disabilities in employment. It’s been seen nationwide, in Europe and in Australia. It’s even on YouTube, and encapsulates our commitment. In our stores, in particular, we strive to make everything accessible to all of our customers. Usually they order a beverage, wait while it is being made and then pick it up. But each of our stores has a sign at the register that offers customers assistance if they would like us to carry their order to their table. Customers using wheelchairs have let us know how much they appreciate this. One letter of thanks came all the way from a customer in England, who wrote: “I am very restricted in mobility due to severe arthritis. The service received was excellent without a doubt.” Closer to home, one of our baristas was searching for an avenue to reach out to the community. Since Starbucks is an avid promoter and supporter of literacy, the barista came up with the idea of holding a monthly Children’s Story Hour and partnering with the National Braille Press by using their selections from the Children’s Braille Book of the Month Club. The barista is ABILITY 15

Marthalee Galeota

Laura Swapp

Partner Network with Deb Dagit

legally blind and wanted to take our support of literacy to a different level. Children and parents gather each month to enjoy the stories that the barista reads to them in Braille. Cooper: Can you talk a little bit about how you approach accessibility for both consumer and partner when you build out a new retail store. Galeota: In the US, we follow Americans With Disability Act guidelines. The aisles in the stores are sometimes an issue because things get moved and baskets of coffee beans are here and there, which makes it a little bit difficult for people to come through who might be using wheelchairs or canes. So in training baristas, we highlight accessibility so that people realize they need to keep aisles clear. There’s also a table that’s a bit oversized for people who use wheelchairs. It used to be a bit taller with a decal on it that said: For our disabled customers. But it stuck out like a sore thumb, so now it’s the same height as the rest of the furniture and blends in. The verbiage on it now reads, For customers with disabilities-using people-first language. Cooper: Anything else? Galeota: Also, the “hand-off plane”-where customers’ beverages and foods are placed-has been lowered in new stores. When it was higher, people of short stature or people in wheelchairs would have difficultly getting their drinks. Our drive-throughs are still a place where you order by talking into a little machine, and the barista inside hears you. But for people who are deaf, we put language on the drive-through menu board that welcomes them to go right up to the first window and order from there. They can write out what they want or communicate however they choose. One of our corporate architects is very involved with the 16

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Leed model. He’s on the board with the national group and is working to get more of a universal design, rather than just the (less stringent) ADA features that you have to follow. The Leed model is about building in a way that is environmentally friendly. Cooper: Then you’re also looking at the products used and the energy demands? Galeota: Right. It’s all of that: the energy, the lighting, how you take advantage of the sun or the way the store is oriented on the land that you have-all of that. That has already been built into the Leed model. What hasn’t been there is the more holistic, universal accessibility features. Cooper: In our Green Pages section, we write about how a healthier planet leads to healthier people, because a lot of what’s going on in the environment contributes to disabilities. Regarding recycling, have you looked at a program where people bring their cups back in and you recycle them? Swapp: That’s something that’s handled on a market-bymarket basis. A lot of municipalities don’t have the ability to recycle on a commercial level. But we do back-ofthe-house recycling in a majority of our stores, where space and facilities permit. Galeota: Any other questions? Cooper: Yes. Can I get a nonfat soy.... (laughter) For more information about the company go to: www.starbucks.com To watch the Great Hires video, visit: http://www.youtube.com/watch?v=VPXiIYz4uw0

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uring the recent Super Bowl, millions of viewers caught a Pepsi commercial, one that some say represents an historic first. The unusual ad featured a silent, 60-second joke: Two guys drive to their friend Bob’s house to watch the big game. Once they get to his street, neither remembers his address. So they sit in the car arguing in sign language until one of them gets a clever idea and lays on the horn. One by one, the houses light up-except for Bob’s. Clay Broussard, who plays Bob, also developed the commercial and has worked for PepsiCo in Dallas for 27 years. Though he is not deaf, the two actors who play his friends, Brian Dowling and Darren Therriault, are. They’re also Broussard’s coworkers and members of PepsiCo’s EnAble, an employee network for associates with different abilities and for caregivers. The threeyear-old organization was founded to influence and provide guidance to the company, which also owns Frito Lay, Gatorade, Tropicana and Quaker, so that people with different abilities were included at all levels. Now more than 300 PepsiCo associates strong, EnAble has chapters in New York, California, Ohio, Washington, Arizona, Florida and Texas. Chet Cooper: How did you get involved with EnAble? Clay Broussard: I have some familiarity with deaf culture, so EnAble interested me; I joined to see what I could contribute. We have a real culture of diversity and inclusion among our various employee networks at Pepsi. Cooper: How did you get familiar with the deaf culture? Broussard: My wife and I attended a church where everything was entirely in sign language for seven or eight years. There was no voicing of anything at all. So that was a real immersion. Cooper: How did you choose that particular church? Broussard: In the congregation that we were part of at the time, there were a couple of deaf people and there was some interpreting. The deaf people became our friends and taught some of us sign language. As that group grew, there was enough people to form a new congregation where sermons could be held completely in sign language, and where the topics would be addressed directly in the native language rather than interpreted. Sign language interpreting is not a direct way of communicating with deaf people. Cooper: In the new congregation, what was the percentage of people who were deaf, and what was the percentage of people, such as yourself and your wife? Broussard: We talked about keeping track, but consciously decided not to because we figured we’re not counting how many black people or white people are

here, so why would we count the number of deaf vs. hearing? I’m one of Jehovah’s Witnesses, and we support all kinds of languages. So it was an outgrowth of our work in that community in terms of education, and I would say there’s probably now a hundred or so congregations across the U.S. that are conducted entirely in sign language. Cooper: You say “now.” Do you think you were one of the first? Broussard: I think we were among the first 40. Cooper: So did that experience draw you into what was going on within your work? Broussard: What happened was a local chapter of EnAble formed here in Dallas, and I thought: This sounds pretty cool. As I have some experience with this aspect of diversity, why don’t I see what I can contribute? I joined and started listening to the goals and missions that EnAble had locally. You may not have heard this, but EnAble wants PepsiCo to be the brand of choice and the employer of choice among people with different abilities. And so we talked about objectives, such as accommodation and acceptability, which foster the conditions for being an employer of choice. Becoming the brand of choice is more esoteric for people. How do you get to that? You can do it through traditional means, such as participating in Multiple Sclerosis walks and activities such as that, but I thought: How can we bring it into marketing and advertising and really demonstrate to the outside world what our culture is all about at PepsiCo? Because I’m familiar with the deaf culture, I thought: Let’s borrow a joke from it and tell it the PepsiCo way, featuring our products and our people and do it in a language that the rest of the world can get and find humorous. Cooper: Did you run into any bottlenecks within the company? (Sorry) Broussard: (laughs) As a soft drink company, we try to avoid bottlenecks. Fortunately, everybody from the top to the bottom of this organization who heard about the concept was intrigued by it. For some, it was a little esoteric, so we had to make a demo version. But once we got the demo finished, people could see it, and they got excited. Cooper: It became tangible. So how did you make the demo? Broussard: First I hired an artist to do a storyboard of the ad concept. We then took the storyboard and floated it past deaf employees inside PepsiCo to say, “What do you think of this? Is it right? Does it match the culture? How would it be received by both the deaf community and the hearing community?” This group remained on the project throughout as consultants. ABILITY 19

don’t know how those things get determined. But we’ve got ideas to contribute. Cooper: So those ideas will be sent up the flagpole the way you did before? Broussard: Yeah, and I think marketing will determine if it’s something we want to pursue. But in the meantime, the Super Bowl ad is getting distributed over the Internet, which has really been huge. While the Super Bowl attracted 90 million households, what’s interesting is that when content on the Internet goes “viral”millions upon millions of people forwarding it along to friends and coworkers-it can potentially reach even more people. The reception the ad received on the Internet was tremendous, beyond anything I would have conceived of, and it quickly went to, like, number three on YouTube. I’ve been told that of the 90 million viewers who watched in on TV, one in 10 households had somebody deaf or hard of hearing in the household. Cooper: I think there are roughly 28 million people that are deaf or hard-of-hearing. Once we had their input, I went to marketing and said, “Here’s an idea that the employee network EnAble is exploring. Tell me what your advice and counsel would be.” And they gave us some great advice about focusgroups studies and achieving authenticity and things like that. So we did focus groups and asked maybe 10 or 12 questions to get feedback. Nearly all the survey responses we got were incredibly positive, with less than three percent coming back with anything negative. Cooper: Those were probably the people who fell asleep during the focus group. Broussard: (laughs) So then my senior executive allowed me to go forward with the demo. I hired a local video production company to do it, and we used all PepsiCo employees. The hardest part was convincing my wife to let me use our house. Cooper: Was that your house in the commercial? Broussard: No, we only used it in the demo, which was a bit different. In that version, we started inside a house and showed them watching a game. After we shot the demo, my senior executive presented it to the senior executive level team, and there was immediate enthusiasm. They green-lighted the project and said, “We want to fast-track this to the Super Bowl and give it as broad an audience as we can.” Cooper: And the rest is history… So what’s next for you? Broussard: I’ve been asked, “Are there follow-up concepts?” There are a couple of concepts we’re considering. I’m still a little new to the mysteries of marketing. I 20

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Broussard: It struck me what a large percentage of the community would identify with the ad. We wanted to tell a story that featured diversity and inclusion in a way that would appeal to a broad audience and in a way that was humorous. Cooper: I think humor is a common denominator. Broussard: On the business end, we figured: “This has a classic element of typical PepsiCo advertising: fun, humor and a good product.” Cooper: What other activities are you working on? Broussard: There are some things that I’m working on. We had a large company reach out to us after the ad was shown, saying, “We’re interested in talking about accessibility awareness, would PepsiCo consider working with us on that?” So that’s something we’re discussing now. Cooper: That’s interesting, that you might provide awareness training to other companies. Broussard: I’m currently working with the Dallas Mayor’s Committee for the Employment of Persons with Disabilities-a forum of businesses in the Dallas metroplex - to determine how to create awareness of this topic inside our community. Last year we sponsored a breakfast for local area HR people on the topic of “onboarding” persons of different abilities. There are other things I’m working on, but can’t talk about yet. The chapter of EnAble that I’m with had a kickoff

meeting for 2008 recently, and we talked about what we want to accomplish this year. Different people volunteered for various committees. Cooper: I noticed you’re not saying “people with disabilities,” you’re saying “people with different abilities.” Broussard: That’s very conscious on our part. Cooper: There’s been a lot of talk within the disability movement about language, such as “people first” language, the word “disability.” Even though the word “handicapped”has been dropped, it’s still a struggle to use the word, “disability”. Broussard: I don’t know if it’s offensive to people, necessarily, but you know, we’re all-what is the common expression? We’re all “temporarily able-bodied.” What I think “Bob’s House” did is give the outside world a glimpse, not just into deaf culture, but a glimpse into PepsiCo culture. Senior leadership’s advocacy of the concept of “Bob’s House” and their willingness to get behind it all the way to Super Bowl, I don’t think could happen in just any organization. I think PepsiCo is leading the way in the 21st century for how other organizations will become over time. Cooper: Would you say your chapter is more active than other chapters? Broussard: I wouldn’t say that. Everybody brings something different to the table. Cooper: Do you have meetings where all of the EnAble chapters come together? Broussard: We have some national meetings where representatives from each chapter assemble. Cooper: In person? Broussard: I believe so, yes. I’ve not attended one yet. There are other employee networks, such as the Women’s Initiative Network (WIN), the Black Professionals Association (BPA), and a Latino-based organization called Adelante. Cooper: Of course EnAble cuts across all those groups. Broussard: We believe that EnAble is the most diverse of any network, because the issues that we’re dealing with are so varied. Cooper: It’s not gender-specific, it’s not race-specific, it’s across the board. Broussard: Yes. And it’s not dealing just with individuals who represent that community, but caregivers who support those individuals in that community. The New York chapter is doing a lot around autism. I know one of the gentlemen involved with it there, and he shared some incredible statistics-that one in 10 boys is somewhere on the autism spectrum, and in the New York area it’s even higher than that. So it’s about creating awareness around this topic. One person who is very active in that group is a parent of children with autism. What ends up happening is that other parents who are employed with PepsiCo, who are also parents of children with autism, come together in a support group and say, “Here’s how you handle and resolve this.” It also fosters awareness and understanding in the rest of us about what our fellow employees are dealing with. So there’s an expression that we’ve got in PepsiCo about, “Bring your whole self to work.” People who are caregivers either of an aging parent or of children with special needs have got some challenges that we can accommodate when we’re aware of what they need. Like our CEO said, “We do better by doing better.” www.nad.org www.pepsico.com ABILITY 21

t first, a recent press trip to Utah seemed to be all about hitting the slopes. Each morning Jessica “Taskmaster” Kunzer got us up, out and onto the mountain. We skied all three days of our journey. We also changed resorts all three days.

She said she tried to ski while focusing on her loving voice, which was helpful. But when she engaged her show-off voice, she found she skied faster. So with my show-off voice egging me on, I tried to keep up with the duo, but they flew ahead. Show offs!

“Did you enjoy the ski lodge?” she’d ask. “Great, then you’ll love the next one! Get your things. We’re leaving.”

Though I was relatively slow compared to them, I zoomed pretty fast by my own standards, so maybe the voice was working to an extent. But I’m not that experienced. Although I skied a little during college and at events connected to this magazine, it’s probably been only a little over a dozen times altogether.

Of course, Jessica said it all in a nice way. Besides, she had to keep us moving, as there was a lot to see during this Ability Awareness tour, sponsored by Ski Utah. The point of the tour was to promote accessibility on the slopes. Skiing is available to everyone, the National Ability Center in Park City is there to help. Day one, Park City Mountain. I met Danelle D’Aquanni, a skier who is legally blind and training for the Paralympics, along with Sally Tauber, her ski guide. At a recent retreat D’Aquanni learned that we each have 99,999 voices in our heads. These inner chatter boxes include the voices of kindness, anger, mourning, love and showing off. 22

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The next day, Snowbasin. Jessica paired me with Chris Waddell a paralympian and five-time gold medalist. (People named him one of “The Fifty Most Beautiful People in the World,” and Skiing called him one of “The 25 Greatest Skiers in North America”) I skied behind him as well, trying in vain to pick up tricks of the trade. Building on my shaky confidence from the first day, I tried the mid-lift for the newly marked slalom course. I had a blast carving turns and hitting gates for the first

Chris Waddell

time. After a couple of runs, Chris and Jessica, an excellent skier herself, wanted to go to the start of the women’s Olympic downhill run. “Hey, it’s the women’s run,” they said, by way of talking me into it. It was a challenge, but I got through it. Next, they wanted to ski the men’s Olympic downhill run.

I could only stare up the slop to see how high we were going, as the gondola operator continued on about the level of risk and how, at this elevation on the mountain, I’d have to pay for my own rescue. Then he asked if anyone wanted to go back down. That’s when somebody—could it have been, um, Jessica?—said, “Nobody’s going down in the gondola.”

“Hey, sure,” I said, as if it were no sweat. Getting there required a separate gondola to the top of the mountain. Until that point, Chris had no problem with accessibility: He would ski to the chairlift and get on while remaining in his sit-ski. But accessing the gondola, however, was a slightly different story. We had to unhook the ski portion of his gear, and needed several people to help us carry him up the metal stair system. In the gondola I sat backwards, looking down as we climbed ever higher, struggling with my fear of heights by pretending to study my ski boots. That’s when I was outed: The gondola operator asked if there was anyone who hadn’t been to the top before? I raised my hand and looked around. I was the only “virgin.”

As the door opened, I gulped, trying to keep my eyes directly in front of me. The beautiful view included parts of four states, but I hardly noticed because I was dizzy and nauseous. Sensing my panic, Chris and Jessica said, “You can do it. You’re a good skier.” Chris, reattached to his sit-ski, was the first down the “catwalk,” a narrow strip that leads to the start of the men’s run. Swoosh! He was down the mountain in a flash. Before Jessica took off, she turned to me briefly and said, “Follow my lines.” I knew she was going to fly down the mountain. At that moment, my showoff voice retreated behind my fear voice. And the latter was loud. Fear, it turns out, has 99,999 voices of its own, including ABILITY 23

Tod Apedaile

John Paul Lodge, Snowbasin

Park City

Jessica “Taskmaster” and Chris

Laura Schaffer, Snowbird

fear of heights, fear of dying, fear of throwing up… I did a half slide down the catwalk to the beginning of the run. It seemed impossibly steep. My strategy was to ski side to side. Off I went. Down I went. Down I went again. Falling and falling. Sliding on my back. At one point, I wondered Will it ever stop? I finally stopped, but by then one of my skis had gone missing. That’s when Jessica kindly swooped down and reunited me with it. I was happy to be saved, but feeling embarrassed to look like a scary klutz in front of my host. Food is always a good salve for the wounds of the slopes. Fortunately for me, Snowbasin has two five-star restaurants, accessible ony by chairlifts. The best part of the hour or so of great company and dining was the time sitting still so that my calm voice could return. After lunch, Chris wanted to go back to the top again. Suddenly, I was in the mood to take pictures. Hey! You can’t ignore your photo-taking voice. Chris flew down the mountain again as I snapped away. That night we went to dinner with a number of people from Ogden, UT, where we had a great discussion about how the city is rejuvenating itself. Downtown Ogden is where the Union Pacific met the Central Pacific Railroad, thus completing the trans-continental railroad. Of course, back in the day, that came with a price: prostitution, opium dens, a fair number of saloons. Ultimately, the town had to clean up its act to become a 24

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legitimate city. It’s done a great job. These days there’s talk about the first indoor ice climbing facility. World renowned climber, Jeff Lowe, supports the facility and plans to teach the sport there to people with MS. On our last day we skied Snowbird, and met up with two families who were taking a class through the Wasatch Adaptive Sports program. One family had triplets, and two of the three had cerebral palsy. When they first entered the program, the instructor said to their parents, “Tell your sons to raise their right hands to go right, and their left hands to go left.” But the parents said, “They can’t raise their arms.” Peter Mandler, executive director of the program, continued to work with them, putting the children on a mono ski and tethering them. Another instructor stayed in front to keep an eye out. As they skied, the kids actually started to move their arms for the first time. When they wanted to turn, they indicated it with their arms. They skiied right on down the bunny slope with wide and wonderful grins on their faces. We then met up with Gael Yonnet, a young French physician who’d been in a snowboarding accident, broken his back and become paraplegic. His experience led him to change his focus to treating those with spinal cord injury. He was just getting back in the game and was inspired by the sit ski experience. On the way home I slept and, lucky for me, my 99,999 voices liked nap-voice as well.

by Chet Cooper

www.discovernac.org www.wasatchadaptivesports.org www.skiutah.com

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nroute to our seven-day Alaskan cruise, we flew from L.A. to Seattle a day early to enjoy a stay at the legendary Fairmont Hotel. It’s an historic, five-star affair where anybody who was anybody has bedded down at one time or another. We journalists had a great dinner, got to know each other and wandered through the streets of Seattle. The next morning, we boarded the ms Noordam cruise ship, part of Holland America’s fleet, blew the horn and eased out into the harbor with the Seattle skyline and its signature Space Needle at our back. The ship was elegant, gleaming and quite accessible, from its wide-lane decks and halls, to its easy-to-navigate elevators, state rooms and dining areas. As all cruises do, they spoiled us with incredible food and gave us plenty of healthful seafood offerings, so we could feel a bit better about it all when we were pigging out at the midnight buffet. They also have a cooking school, an eco-conscious spa and a Walk for the Cure event, which allows you to do 12 laps around the ship to raise money for breast cancer research. First stop: Glacier Bay National Park, where the panoramic sweep of mountainous ice encircled us. It seemed touchably close, and yet an hour later we were still moving towards it thinking, We’re almost there, we’re almost there. Then we looked across the bay and spied another cruise ship that was as small as a dot, and realized that our whole sense of size and proportion was completely distorted. The glacier was so much more vast and more imposing than we could imagine. ABILITY 27

One of the most incredible things about watching a glacier is that it changes before your eyes. The locals call it calving when a big hunk of the whitish blue ice snaps off and crashes into the water. As the glacier slowly moves into the sea it emits an echo that they call “white thunder,” and gives you an even deeper respect for nature. Next stop: Juneau, a woodsy-looking town that puts you in the mind of the western frontier. Because accessibility was never a problem, our group put a good deal of wear and tear on our credit cards at various stores and restaurants. We bought indigenous crafts, smoked salmon and bowls made out of a single piece wood. But for those who like adventure, Juneau’s also great for scenic bicycling and treks through its thick, lush rain forests. From Juneau we flew in a small biplane to Sitka, where we got in a few more gawks at glaciers and then came in for a landing directly on the water. Then we headed to a nearby cabin for a tasty salmon cook out. As a finishing touch, the cooks slathered on sweet glaze, which was the next best thing to honey according to the bears that came out of the woodwork in hopes of having dinner with us. “Stay back, stay back,” the proprietors implored us. That’s when I grabbed my camera and rushed forward. How many opportunities do you get to meet and greet a bunch of furry friends the likes of dem bears? Not often enough, I’m afraid. In Ketchikan, we hiked to a sanctuary for birds of prey, where I got some great shots of bald eagles, as well as pictures of salmon swimming to spawn. It was and incredible experience to witness the punishing upstream journey that would cost them everything. Thoughout our trip, we saw elements of indigenous peoples’ rich culture, including carvings of beautiful soapstone as well as tall wooden totem poles that depict clan stories and histories. We also saw whales threading their vast bodies in and out of the water. Everything was so picturesque that the cruise felt like slipping into another world-a world I wouldn’t mind slipping into again and again. Holland America, call me. by Chet Cooper Holland America Line has more than 150 cruises that set sail to Alaska from Seattle and Vancouver between May and September. Whether it’s viewing wildlife, historic treks, fly fishing, kayaking or mountain climbing, there are plenty of shore excursions to suit your tastes. Fares start at about $850. www.hollandamerica.com

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OPENING DOORS AND MINDS

n today’s competitive society, a college degree is crucial for success. Not only does a degree symbolize knowledge attained, it also opens doors for greater financial and social opportunities. Over an adult's working life, high school graduates earn an average of $1.2 million, associate's degree holders earn about $1.6 million, and bachelor's degree holders earn about $2.1 million, according to the US Census Bureau.

In addition to financial advantages, other benefits of higher education include such intangibles as a tendency for postsecondary students to become more openminded, more cultured, more rational, more consistent and less authoritarian— benefits that get passed down to succeeding generations. These are qualities that society values and a chance to develop them should be available to all students, including those with disabilities. Universities are legally required to provide students who need them with reasonable accommodations for course examinations, provision of equipment and auxiliary aids, including sign language interpreters. They must make certain that students know about these services. They are also required to ensure that students with disabilities are not denied educational opportunities because of architectural barriers. While these laws are in place, it often takes advocacy to put teeth into them. That’s why the Disability Rights Legal Center (DRLC) recently represented undergraduate and graduate level students with disabilities at California State University, San Bernardino (CSUSB), a sprawling campus of 17,000 students. In the case, plaintiffs alleged that despite persistent efforts by the students with disabilities to obtain accommodations for classes and classrooms—spread out over 67 buildings across more than 400 acres—they were unable to achieve the access required to complete their educations. The students had advocated on numerous levels, including filing a complaint with the US Department of Education’s Office for Civil Rights. Nevertheless, the students alleged that they continued to experience myriad difficulties. One master’s degree student with a spinal injury needed accommodations such as a standing podium in class because she was significantly limited in her ability to sit at a typical desk. However, the podium was sometimes unavailable or had been moved to a place where she could not get to it easily, which negatively affected her studies. Another student with a vision disability needed his textbooks and other written material translated into alternative formats, such as audiotapes or Braille, and also required notetakers and testing accommodations. He received the accommodations after weeks of delay or not at all, and could not participate fully in his courses. These students’ experiences were echoed by the allegations of other plaintiffs and class members. Some students were made to wait for weeks after classes had begun to receive modified equipment and alternate format materials. When instructional media was finally provided, it was often inadequate. Books on tape were inaudible, or the wrong chapters were recorded. At times, accommodations were modified or eliminated without notice in the middle of an academic term. Many students experienced architectural barriers throughout the campus. Now, thanks to a recent settlement, these doors of opportunity have swung wide for these individuals and other students with disabilities. The DRLC and the Law Offices of David G. Geffen secured the rights of CSUSB students with disabilities in a recent federal class action settlement (Jackson, et al. v. California State University San Bernardino, et al). The settlement resolves a challenge to what plaintiffs alleged was CSUSB’s systemic failure to provide consistent accommodations and 30

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physical access for students with disabilities. The class action suit alleged violations of federal and state disability rights laws, including the ADA and Section 504 of the Rehabilitation Act of 1973. As part of the settlement, the University has also agreed to spend approximately $11.7 million to remove architectural barriers and enact substantial, campus-wide changes. This will ensure that the more than 300 students with disabilities who seek services from CSUSB are fully accommodated and well-served. This includes alternative and accessible furniture, accessible software in computer labs, campus transportation, staff and faculty training as well as student grievance procedures. The agreement also mandates the creation of an emergency evacuation plan for students with disabilities. “Addressing barriers to education is critical to ensuring that people with disabilities are independent and integrated members of society,” says Shawna L. Parks, director of litigation for the DRLC and lead counsel on the case. “The scope and depth of the commitments made by the university in this settlement will usher in a new era at CSUSB.” In fact, it already has. The master’s student was awarded her degree in 2007, shortly after the court approved the settlement. Likewise, the plaintiff with a vision disability was able to receive his alternative reading materials and testing accommodations and is back in school. This agreement will serve as a model for how campuses across the nation can appropriately serve students with disabilities. This is especially significant in light of the incoming influx of student veterans, many returning from Iraq and Afghanistan, who are expected to begin college in the near future. by Paula Pearlman & Debra Patkin For more information, visit www.disabilityrightslegalcenter.org

The Mission of the Disability Rights Legal Center, formerly the Western Law Center for Disability Rights, is to promote the rights of people with disabilities and the public interest in and awareness of those rights by providing legal and related services. We are located on the campus of Loyola Law School in Downtown Los Angeles and work with Loyola Law students in all of our programs.

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y most accounts, low back pain is the leading cause of lost work time in the US, and perhaps in much of the developed world. In the early days of the Industrial Revolution, at least one physician associated the malady with the “back-breaking” work of railroad construction, and described the condition as “Railway Spine.”

A person who has exhausted most available remedies and seeks the advice of a physician can expect a somewhat regimented approach. The primary care physician may prescribe a slightly stronger pain medication or simple exercise regimen. This is an appropriate stall tactic, as back pain often resolves on its own or with simple intervention.

Although back pain is somewhat better understood these days, it is still the most common complaint heard in a doctor’s office. Most of these complaints are attributable to degenerative arthritis of the spine, which all adults have as a natural part of the aging process. The word arthritis actually means inflammation in the joints, and the spine is one long series of joints.

If symptoms persist despite initial treatments, a primary care physician may then refer the patient to a physical therapist. A trial of physical therapy frequently involves moist heating pads, massage and range-of-motion exercises applied during a series of several visits per week. Strength training or more rigorous therapies are reserved for periods when pain is absent or minimal.

Virtually everyone will experience back pain at some point in life. In addition to occasional excruciating back pain, symptoms can include numbness and weakness in one or both legs, difficulty walking, bowel and bladder problems as well as sexual dysfunction.

Frequently, an MRI scan is obtained to better assess the exact nature of any degenerative changes in the spine. In the case of low back pain, the MRI will show the lower part of the spine, called the lumbar spine. Aside from excluding the rare, more serious diagnosis, this contributes little to the initial management of low back pain. Most of the time, an MRI only shows the degenerative changes in the spine that all adults have. Most of us are not aware that we have these age-related changes in our spines because we are not having severe enough symptoms to warrant an MRI scan.

Fortunately, most people will only have a few minor episodes, which will respond to home remedies such as rest and over-the-counter medications. Others, however, may require additional measures, including altering work habits or replacing an old mattress with a new, more supportive one. Still others who experience ongoing chronic back pain will get partial relief from more advanced treatments and go on to live relatively normal lives. Those with the most severe cases may continue to find themselves in declining health and be referred by their general practitioners to see a neurosurgeon. These specialists are trained to operate on the brain and spine. Some orthopedic surgeons also perform spine surgery— a procedure which should always be a last resort. Traditional therapies include medication, physical therapy, chiropractics, pain management and sometimes surgery. Non-traditional treatments include acupuncture and acupressure. Unfortunately, no treatment is completely effective in every case. Use of non-traditional potions and herbs not regulated by the FDA should be approached with caution. Most are ineffective, while others, if used improperly, can cause liver damage and other problems. Often, there is a psychosocial component to back pain. Life stressors or depression, for example, may require specific therapies. When the stress or depression is addressed, the pain may vanish. Those on a quest to ease chronic back pain should beware. While many therapies are touted, success rates are disappointingly low. This can be as frustrating for care providers as it is for patients. In general, doctors tend to believe that the best treatments for a disease are those that can be scientifically proven. Even the treatments for back pain that have been studied the most have not produced impressive results.

When physical therapy is no longer effective, the next step may be a referral to a pain management specialist, who usually has expertise in anesthesia or physical medicine. This person may invoke a number of treatments from careful administration of potent narcotics to injections of anesthetics and steroids directly into the lumbar spine. All too often in this country, the next step is referral to a spinal surgeon (neurosurgeon or specially-trained orthopedic surgeon). In many instances, spine surgery is relatively effective. However in others, there is little or no improvement or the relief is temporary and symptoms return in a few years. Though most operations are completed successfully and many patients recover without a hitch, never lose sight of the fact that such back operations are considered major surgery and therefore involve risk. For those who suffer pain in their cervical spine (neck), the story is nearly the same. However, degenerative arthritis in the neck can cause symptoms in the arms as well. Cervical spine disease is fraught with an additional concern in that the spinal cord itself can be involved. Pressure on the spinal cord causes a greater array of symptoms, some of which may not recover even if the pressure is relieved surgically. This lowers the threshold for surgical treatment in the case of cervical spine disease, but does not change the scrutiny with which the decision to have surgery should be made. In the next installment of our special series on pain management, we’ll discuss fibromyalgia. by E. Thomas Chappell, MD ABILITY 33

vote. State and local governments may comply with ADA accessibility requirements in a variety of ways, including redesigning equipment, reassigning services to accessible locations, altering existing facilities or constructing new ones. In choosing the manner in which to comply with these ADA regulations, state and local governments must give priority to those alternatives that provide the most appropriate, integrated setting. Despite these laws, many people continue to experience accessibility problems at their local polling place. As a result, I requested that the U.S. Government Accountability Office (GAO) survey people with disabilities about their perception of their access to polling places and to alternative voting methods.

A VOTE FOR ACCESSIBILITY! Dear ABILITY Magazine Readers, Voting is the foundation of our American democratic system, yet until recently many voters with disabilities faced physical barriers at the local polling place. This often discouraged them from participating in elections. When they did, it was often by absentee ballot. I believe that people with disabilities should have a choice about how they wish to vote. If they want to go in person, they should be able to do so. Consequently, I have worked to ensure that they have the option to vote in a full, equal and integrated manner. Historically, accessibility issues facing voters with disabilities on election day generally fall into two categories: physical access to the polling place and “ballot accessibility.” There are a number of federal laws that, together, are intended to afford voters with disabilities accommodations in both of these areas. Under the Voting Rights Act of 1965, voters who are blind, disabled or unable to read or write are entitled to assistance by a person of the voter’s choice. This person is permitted to accompany the voter into the booth. The Voting Accessibility for the Elderly and Handicapped Act of 1984 requires that all polling places for federal elections (with a few exceptions) be physically accessible to voters with disabilities. Additionally, states are required to make available voting aids for those who are disabled, including instructions printed in large type at each polling place and information about telecommunications devices for those who are deaf. Title II of the Americans with Disabilities Act (ADA) requires that people with disabilities have access to public services, programs or activities, including the right to 34

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The GAO visited nearly 500 polling places nationwide during the 2000 election and reported that 84 percent of them had one or more barriers to accessibility. In addition, the GAO found that none of the places surveyed offered ballots in an alternative format or voting equipment adapted for voters who are blind. While the results were discouraging, their exposure did add support for stronger provisions for voters with disabilities in 2001’s Help America Vote Act (HAVA). This act contained a number of provisions designed to increase accessibility for voters with disabilities. For example, state and local governments are eligible to receive federal funds to make paths of travel, entrances, exits and voting areas at polling places more accessible. Additionally, each polling place is now required to have voting equipment that accommodates everyone, including the blind and those with low vision, so that they enjoy the same privacy and independence that is accorded to others. Following the passage of HAVA and the 2004 election, the GAO has reported improvements in state provisions and local practices. However, we do not know the extent to which these advances have resulted in improved accessibility of polling places and voting systems on election days. That’s why I have requested that GAO reexamine the issue during the 2008 election. I know that many of you disability advocates continue to work with state and local officials to ensure that local polling places are accessible, and I commend you on your efforts. Together, we can ensure that voters with disabilities can fully participate in the electoral process. Senator Tom Harkin, D-IA Sincerely,

Senator Tom Harkin www.harkin.senate.gov

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n their new book, Big Brain: The Origins and Future of Human Intelligence, authors Gary Lynch, PhD, and Richard Granger, PhD, ask, “Does size matter?” Here are some clues: 1: Based on physical size alone, men’s brains are bigger than women’s. (But if women are right, men think with another part of their anatomy anyway.) 2: There were pre-human primates, now extinct, whose brains were relatively larger than ours. 3: Chimpanzees perform better on certain memory tasks than college students.

To knock some sense into their own skulls, Chet Cooper, editor-in-chief, and E. Thomas Chappell, MD, managing medical editor of ABILITY Magazine and neurosurgeon, recently spoke with Granger, who is a professor at Dartmouth College in Massachusetts, about the book he co-authored with Lynch, a professor at the University of California, Irvine. The two scientific researchers undertook a groundbreaking study of the human brain’s evolution. Both prominent neuroscientists, they trace human intelligence back at least tens of thousands of years to before the Boskops, prehumans with brains 30 percent larger than ours. Granger and Lynch endeavor to understand Alzheimer’s via a computer model, to comment on the limits of the human brain, and to examine such stellar thinkers as Albert Einstein. Chet Cooper: Gary is in California and you’re in Massachusetts… how did the two of you get together to write this book? Richard Granger: We both used to be at UCI. I came to Dartmouth to take an interdisciplinary position. Dartmouth College founded the Neukom Institute, which is aimed precisely at the questions that interest me most. 36

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Namely, how can we understand brain cell connections as circuits? How can we understand the complex systems of the brain so thoroughly that we can actually build “simulacra” or computer models of them? The institute is in the building stages now at Dartmouth, and it’s an exciting and challenging prospect. Cooper: When you think about building a computer model of the brain, given the complexities of what goes on with memory and the organ’s other functions, can you say how you’re going to pull that off? Granger: Sure. There are a few key ideas. One is to consider the connections between brain cells and treat them like electrical circuits. We can actually build brainlike circuits and study them. Another notion to consider is that much of what we become as humans is learned. Some things are hardwired, so to speak, based on evolution and genetics or DNA. Other things are acquired from our various life experiences. That combination is the one-two punch scientists are striving to understand. We are trying to build circuits with an architecture similar to that of the brain. Computers have what is called an architecture, which is a set of circuit designs that can do such tasks as calculations. Though computers are now quite sophisticated, they can’t “think,” “recognize,” or execute many of the tasks that humans can do with their brains. How well we understand the brain is another matter entirely, but our knowledge base continues to evolve. We can already “teach” the circuits we’ve built. We literally hold up a cup in front of a robot and say, “Here’s the cup.” Then we move it and say, “Now the cup is over here,” and then we ask it, “where did the cup go?” We teach it the relationships between objects in the real world, what it perceives, what it “hears.”

The computer can respond to simple language, such as you might use with a child, to format its own internal software models for what it’s seeing and hearing. This sounds a bit like magic, but existing computer technology allows machines to change their output based on certain input. This is analogous, in a rudimentary way, to a child never touching a hot stove again. Tom Chappell: How does this relate to Artificial Intelligence (AI)? Granger: Attempts at AI have had a goal related to ours for a long time. Much of the early study in this area was not focused on the brain. It was focused on studying human behavior, and trying to see if we could imitate that behavior with a computer. In all fairness, this is a bit like trying to understand a car without looking under the hood. More recent endeavors pay attention to what the actual mechanisms or the “engines” of the brain are and how they actually work. Our idea is to better understand the intricacies of brain function to give us a realistic shot at building robotic brains.

that they perceive realistic experiences, it may be a superior way to learn. If, however, you are talking about a person unwilling to learn new ideas, that’s a different story entirely. One certainly doesn’t want to turn to thoughts of “brainwashing.” Chappell: I’m curious about the scientific approach you use. Are you studying the “circuitry” of the brain and then trying to emulate it with electrical circuits, or are you learning more about electrical circuits and then trying to see if they apply to the brain, or both? Granger: It’s the former, much more than the latter. We’re trying to take the computational and engineering knowledge that we have and apply it to brain function, to help us see if we can understand what kind of “machine” a brain really is.

The average human working in the other brain size is about 1350 However, direction is quite interesting, as If we can understand brain cubic centimeters, Einstein’s well. circuits, we can build artificial circuits that might be able to “plug” brain was less than 1250 into brains. Circuits that might be

Cooper: I guess one of my concerns is the concept of ignorance and how we might replace a person’s ignorance with a certain idea. That’s the good thing about ignorance—it’s curable. If you introduce the person to information in a specific way, you may get them to understand it. Often it seems the only way for a person to understand something is by experiencing it. I’m talking about temperament theory, specifically a temperament that is rigid. The only way a person with a rigid temperament is going to change their thinking is by having an experience that is different from what they perceive to be the truth. So, I’m wondering how that’s ever going to be possible. If you look at extremists, for instance, they truly believe what they believe. There seems to be no way to change their views, no matter how inaccurate they are. So the question is, if you could understand the brain mechanisms that support this kind of thinking, could you change it for the better? And, if you could, would it be ethical to do so? Granger: That’s a tough issue, and one that’s on all of our minds these days. Picture a teenager who just doesn’t realize that a car really is dangerous until he gets in his first accident. At that point, his whole conception of what he’s doing while he’s driving changes. The ability to simulate experiences is already happening in what we now call virtual reality. Many kids these days are exposed to this in video games with uncertain results, to be sure. If we can train people by simulating reality so

able to act as prosthetics and improve or repair brain function. Chappell: The “quantum leap” is the connection between the brain and the mind. Eric Kandel’s work on this problem won the Nobel Prize. As you know, he was able to show chemical changes in the rudimentary nervous system of a simple invertebrate that occurred with changes in the organism’s behavior as it “learned”—or better stated, adapted to changes in its environment. Are there circuits that are capable of making changes based on input? Granger: Absolutely. Understanding the mechanisms for learning is a crucial piece of our work. Building on work by Kandel and many others, we’ve increased our understanding of the biophysical (electrical and chemical) changes that occur at the synapses. Synapses are the connections between neurons (nerve cells) in the brain. Understanding how biophysical changes occur in the brain during learning has led to an increasingly sophisticated understanding of how we learn. This has already led to the development of novel drugs, many of which are currently in human testing; and novel hypotheses and treatments for learning-related conditions. Such knowledge also underlies our ability to build artificial brain circuits. These artificial brain circuits, called simulacra, can also “learn” on a synapse-by-synapse basis. Chappell: So you start out with simplistic circuits and rudimentary functions, emulating a lower organism’s nervous system and then you build on that? Granger: Yes. A lot of that is going on in our field. ABILITY 37

Obviously, it’s easier to build simpler mechanisms, but it’s also potentially frustrating, because no one wants to build a simple mechanism and then discover that it is not on the pathway to bigger and better mechanisms. One of the reasons we’re studying the evolutionary progression of small brains to big brains is precisely because we want to know where the highway went that led to humans as opposed to some other version of our species. Chapell: When you say “small brain” and “big brain,” you’re talking about evolution—how nervous systems have evolved from simple “lower organism” nervous systems to the mammalian brain? Granger: That’s right. Actually, all mammals’ brains are extraordinarily similar. The brain of a mouse and the brain of a human are, except for their size, far more similar than they are different. The neurons, the chemistries and the brain areas are basically the same. The organization and the communication between those brain areas are basically the same. The differences between the brains of lower mammals and humans are enhancements of the same basic brain structure. So we do study simpler brains to better understand “big” brains. We are getting vital hints from the simple brains and studying how those “scale up.” This way we can understand what aspects of small brains actually compare to those of larger brains. Chappell: Since mammalian brains are all similar, you are probably more interested in key developments in brains that occurred along the sub-mammalian levels of the evolutionary chain? Granger: Right. The goal isn’t just to understand mice or cockroaches; we really want to understand humans. Early vertebrate brains, like those of fish, actually have some of the constituents that are still present in mammalian brains, even in humans. So yes, we are using each of these clues along the evolutionary “highway” to understand the human brain. Chappell: You mentioned the cockroach and the human. That’s a big jump in brain complexity. What are some good examples of organisms with nervous systems of intermediate complexity that have given you useful information? Granger: There are two parts to the answer. One is to say, begin with the earliest vertebrates—fish. Then move in short steps along the evolutionary chain to study the brains of the earliest mammals, which are relatively simplistic. The brains of fish and lower mammals 38

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are based primarily on the olfactory system (parts of the brain linked with sense of smell). It appears that as the brain evolved, our other senses developed “on top” of the olfactory system, so to speak. As we go up that scale from mice to dogs to primates to humans, we get increasing size and subtle, but important differences in the ways various areas of the brain develop. Cooper: Eventually, if things continue to progress, we should be able to build models of certain chemical activities or to track the failure of those activities that occur in the human brain, right? Granger: That’s right. For instance, we might model the binding of dopamine (a brain chemical or neurotransmitter) with its specific receptor, or the failure of this interaction that occurs in Parkinson’s disease. Another example might be a model of glutamate (another neurotransmitter) transmission and the problems that occur in Alzheimer’s Disease, and so on. Cooper: What is the link between the “brain” and the “mind.” Granger: One of the big questions in this field is Do minds arise simply because there is a brain? Is the mind simply what the brain does? If not, what other information about this do we need to put in our computer models of the brain? So one can imagine getting to a point where we build a complete brain that has its synapses and its chemical transmissions simulated; its brain compartments and communication between them, yet doesn’t give rise to perception, memory or consciousness. But it is still feasible that, as we build these things up to the scale that we hope to build them, more properties of “the mind” will emerge. The suggestion was made that if we can build machines that are intelligent in ways we are not, perhaps the combination of our human intelligence and these machines might overcome our shortcomings. We often see that in science, where the instrumentation is vital to making the leap in knowledge. We couldn’t understand the universe without telescopes and infrared astronomy. We couldn’t understand chemistry without electron microscopes, and so on. This may be another round of “tool-building” that we have to go through to understand the mind. Cooper: What would you like people to walk away with after reading your book?

Granger: We think of humans as the pinnacle of evolution. There were human-like creatures, some close “cousins” of ours, that lived 10,000 to 20,000 years ago. They had brains substantially larger than our own relative to their body size. These species may have even been smarter than us. They may have been more capable than us. Yet, somehow they didn’t survive evolutionary pressures, so to speak. If they were around now, maybe our society would be more advanced.

There’s an enormous amount of evidence that just within a species, such as humans, bigger brains don’t matter. The average human brain size is about 1350 cubic centimeters; Einstein’s brain was less than 1250.

Cooper: You’re talking about the Boskops?

The range of brain sizes within a single species is substantial. You often hear from people who claim that different races or ethnicities have bigger brains and more intelligence, but that is simply not the case. When measurements are taken, we find that size within a species really doesn’t matter.

Granger: Yes. The Boskops and many others. The Boskop is just sort of our “poster child,” but there are a number of well-studied skulls from 10,000 to 30,000 years ago that are much larger than ours. Endocasts or molds of the would-be brain size were made from these, and they’re big, shockingly big!

On the other hand, between species, it’s the organization of the brain that matters. When you compare species, considering two animals with similar size bodies but different size brains, you do see behavioral differences—things that it’s pretty hard to think of as anything but differences in intelligence.

It raises the question, how is it that we ended up this way? How did we get the intelligence that we have? Or were we somehow selected to survive for our slightly lesser intelligence? Is there some crucial ability that we have that they didn’t have?

Take an ape and a human of roughly the same size, for example. The human has a brain that is easily three times larger. It’s hard not to say that there is something in that. The same thing happens in many other species in “head-to-head” comparisons—(laughs) pun not intended!

Chappell: Does size really matter, or is it more of an efficiency issue? When we are infants, brain growth is what determines the skull size. So, what if the Boskops were just genetically programmed to be larger animals and their brains were just larger because they were larger?

This doesn’t mean, necessarily, that added intelligence has added survival value. That remains to be seen. Humans haven’t been around that long in evolutionary terms. Cooper: This was fun.

Granger: The skeletons that go with these large skulls are slim and about 5 feet, 6 inches tall. They look like medium to small humans, but with huge skulls. We evaluate the brain-body ratio, a topic we return to repeatedly in the book. One of the key questions is just the one you posed: To what extent does brain size make the difference?

n general, movement and sensation on the left side of your body is controlled by the right hemisphere of your brain and vice-versa. About 90 percent of the population is right-handed, performing most important functions, such as writing, with the right hand. In almost all of these people most of their language function (reading, understanding, speaking and writing) is controlled by their left hemisphere. This is referred to as “left-hemisphere dominance.” Of the 10 percent or so of people who write left handed, about a third also have most language function in the left hemisphere. Another third or so have most language function in the right hemisphere, and others have considerable amounts of language function in both hemispheres. Those who use both hands equally well (ambidextrous) have no dominant hemisphere.

Granger: Yes it was. I found it quite stimulating.

When it comes to primary use of a particular foot, say for kicking a ball, the picture is not quite as clear. This has often perplexed people who are trying to learn to ride a surfboard, skateboard or snowboard, and who are not certain about what would be considered “putting their best foot forward.” Most people figure out naturally which foot arrangement is more comfortable. Given the preponderance of left hemisphere dominance in the population, most people tend to put their left foot forward. In most board sports the rear foot is the control or “power” foot. But many of us, including many of us who are almost completely right-handed—or left hemisphere dominant—still put our right foot forward on a sport board, which officially makes us goofy-footed.

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ity chef ica, CA, celebr on M ta an S in king a rowing up her grandma ba an rs be em m re ee cake for Sandra L eese and peach special cream ch a Lorraine made the dessert . Grandm aunt's birthday s and a dash of pain. he ac with love, pe d Nethost of the Foo e th t,” lo a s r hand h Sandra “She rubbed he mi-Homemade Cooking Wit Se , and that work TV show ew she was fatigued, in pain ars old, kn ree and four ye Lee recalls. “I ollen. But at th sw e er w s nd her ha nd why.” I didn't understa A), a chronic, atoid arthritis (R that causes m eu rh d ha a Lee's grandm une system ase of the imm progressive dise

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stiffness, inflammation and damage to the joints of the hands and feet. (See A Joint Project, p. 45). Grandma Lorraine’s challenges were exacerbated by the fact that she worked in the cafeteria at the local Rand Corporation, where she prepared meals for the multitudes.

Despite her RA, saucy Grandma Lorraine taught Lee how to fire it up in the kitchen

Still, cooking brought her a great deal of joy. “She baked for showers, weddings and church bake sales.” said Lee, who’s recent book is called Made From Scratch: A Memoir As a youngster, she followed her grandma around the kitchen, picking up pointers. For instance, her grandmother never boiled the macaroni for mac and cheese. “She’d bake it all together, tossing the noodles in butter, adding her water, cheese, cream and putting it in a dish.” Voila, one pan to wash. Today, Lee’s many books, as well as her Food Network show, in which she uses 70 percent store-bought products with 30 percent fresh ingredients, is built on tips gleaned from grandma, who died nearly a decade ago. In tribute to the woman who most inspired her, Lee recently added a component to her business and charitable work called I Can With RA. The program helps cooks living with the condition shop, organize their kitchens and whip up delicious dishes in a way that causes the least discomfort. The eldest of five, Lee learned how to be enterprising early on. She and younger sister, Cindy, went to live with their grandmother when her mother, a teen parent, found herself overwhelmed by the responsibilities of rearing small children. Times were hard. Lee’s grandmother applied for welfare and food stamps, which created a financial bridge until the two children were older and reunited with their mother, then living in Washington state. “My grandmother taught me to save money and to be a coupon clipper, which introduces you to new, innovative products, ingredient combinations, great flavor and taste. She took a less expensive roast over a more expensive cut and told the butcher to cube it,” which helped it cook down and become tender more quickly.

use bamboo steamers to cut down on caloric fats. Steamers with stacked layers, she says, allow you to prepare two different items, a fish and a vegetable, for instance, all at once. The celebrity chef adds that buying pre-chopped or presliced veggies, which might cost a bit more, is another way to make meals more painless. She suggests that picking something up at a salad bar, letting the bakery slice a fresh, multigrain loaf of bread, or having a fishmonger crack shellfish are additional ways to be gentle to one’s hands. “I try to keep prep time within a 20-minute range, because when we’re hungry, we’re hungry now,” she says.

Her grandmother’s way of managing RA was to keep her kitchen tools at hand, right there on the counter, which Lee does to this day. Having a family member with arthritis also made Lee aware that those with the condition must deal with dietary concerns, creating meals that are low in salt and sugar, while foregoing alcohol.

More tips from Lee to organize your kitchen:

On her website for cooks with RA, the author urges them to “take someone with you to the grocery store, and to use paper plates, so you don’t have to do dishes.” Lee herself says that she eats off of paper plates a couple of days a week.

Pour pasta into a metal colander and carefully set that inside a pot of boiling water. When your macaroni is done, use oven mitts to lift it up and drain it right there at the stove, so you don’t have to lug a heavy pot of water back over to the sink.

She urges cooks with RA—and really everyone—to

Lee, working in partnership with Bristol-Myers Squibb

Use open shelving so that prep tools and plates are easier to access. Put items high enough so that you don’t have to bend.

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and the Arthritis Foundation, has bonded with an RA support group of women over the last year and a half, helping them to get cooking, stay encouraged and brainstorm ways to help themselves and others. They’ve also given her valuable ideas for her new website, such as using pots and bowls with two handles, so that the weight is distributed between both hands and therefore feels lighter. One of the chef’s books that is due to be published in 2008, Short Cut Meal Solutions, offers the opportunity to save additional steps by preparing one meal that can be stretched out for two or three more. As Lee puts it, “Cook once, eat thrice.” That concept is another page right out of her grandma’s playbook, Lee says, crediting her elder as the originator of the semi-homemade approach to cooking. Grandma Lorraine helped her refine the notion of “making meals special and thoughtful, while saving money, because everyone is overextended with too much to do, and not enough money to do it,” she says. Ironically, it was dealing with food stamps as a child that made Lee a more astute adult. At the time, she found the experience “scary and embarrassing… You had to go to the grocery story and figure out how to make the dollars stretch throughout the whole month.”

• a joint project •

ood rockstar Sandra Lee may be the front person for the I Can With RA campaign, but Patricia Daul, RN, provides strong back up behind the scenes.

There were things she could buy on welfare and things she couldn’t, so she organized her cart with eligible items in one part and ineligible items in another. “It wasn’t fun, but it was a very good learning experience,” teaching her how to glean good values for the money. Lee applied that same approach to decorating her family home back in the day, which led, in her 20s, to her first, multi-million dollar enterprise: a home-decorating kit called Kurtain Kraft, which she sold on QVC. Though money was unbelievably tight during her formative years, the famous foodie now finds she has plenty in her cornucopia to share with others. It was Lee and her team who first contacted the Arthritis Foundation to create an online site for people with RA. In Los Angeles and New York, she lends her name and her time to Project Angel Food and God’s Love We Deliver, respectively. Lee’s Grandma Lorraine continues to be her source of inspiration and motivation. . “I want to reach out to people who have felt unsupported, unheard and scared,” she says. “ I want them to have a place to turn. “I want to change lives.” Pamela K. Johnson

her RA, which made the things she loved to do, like cooking and baking, difficult. It was really insightful to learn from Pat some of the science behind the disease and how it impacts patients in their daily lives.”

“Working with Sandra is a great honor,” says Daul. “Her Simply Homemade concept of 70 percent store bought and 30 percent fresh is a perfect marriage of ideas. If you have RA and can’t stand and chop veggies for an hour, you can still have great stews and soups.”

RA affects more than two million people, 75 percent of whom are women between their 40s and 60s, when they may still be caring for children, but also starting to deal with aging parents. Says Daul, who works at New York’s Buffalo Infusion Center, “It’s a terrible time to be sidelined by a potentially crippling disease.”

RA—Rheumatoid Arthritis—is a chronic, progressive disease of the immune system, resulting in stiffness, inflammation, pain and damage, mostly to the joints of the hands and feet. It is one of 80 autoimmune diseases.

Early signs of RA are aches and/or stiffness in the joints that last a few minutes to several hours. Perhaps you can’t get your rings off because your fingers are swollen, or you feel fatigued as if you have the flu.

Autoimmunity is the failure of an organism to recognize its own self-down to the sub-molecular levels,which results in an immune response against its own cells and tissues.

“If a patient says, ‘It feels like I’m walking on rocks,’ a little light bulb goes off in my head,” adds Daul, who will then take a thorough medical history from a patient. “A family’s history is important to know,” she says. “Mom and dad, brothers and sisters, aunts and uncles, grandmother and grandfather—family health is linked; we may have a family predisposition for RA.

Together, Lee and Daul, who has worked as a nurse for 25 years, 17 of them in the area of autoimmune diseases, do community outreach, educating people on RA, as well as helping cooks turn out tasty dishes with a minimum of discomfort. “I saw first hand the difficulties my grandma faced with

“My father had a positive RA blood factor. He didn’t have RA, but his sister did. If I ever begin to feel the symptoms, I will tell the intake doctor about my family history with the condition. This is how we begin to put ABILITY 45

Patricia Daul and Sandra Lee help to add some spice to the lives of cooks with RA

together the puzzle when a patient comes in; we need a lot of details to make a diagnosis.” As is the case with autoimmune diseases in general, the effects can be mild, moderate or severe. They tend to have flare-ups—periods when they get worse-as well as remissions—when they all but disappear. Usually, however, they don’t go away, and the flare-ups increase. Fortunately both the disease and the symptoms are typically treatable. Daul recommends that a person with symptoms of RA seek out medical attention early, because treatment may not only help with symptoms, but can potentially arrest the disease’s progression. Within the past 10 years, says the nurse, biologic medications have emerged which treat adults with moderate to severe RA. These medications not only improve physical function, but control the advance of joint damage. “That’s huge in a rheumatology setting,” she says. “Until there’s a cure, we want to keep people functioning.” It’s best to work with a rheumatologist who chooses an aggressive course of treatment, using the latest category of Disease Modifying Anti-Rheumatic Drugs (DIMARDS). These treat not only symptoms, but go after the disease molecules, or target specific cells responsible for the inflammatory cascade that often occurs. “We don’t know what gets RA going, but there appears 46

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to be a trigger, which turns on this faucet of sorts, bringing inflammation to the joints, causing swelling and erosion of the tissues. I’ve seen patients whose hands are deformed. These drugs can keep the disease from getting worse. I don’t want to see people’s hands like that anymore.” Though Daul’s patients ask her all the time what causes RA, she says she doesn’t have the answer. But because most patients with it are female, she says hormones may play a role. Other factors could be bacterial, viral or environmental in nature. “There are so many theories,” she says, but no answers. That’s why she encourages people to talk about what works best for them. “My patients are very generous in sharing their diagnoses and experiences. They say, ‘This is what I’ve done; this is what helps me.’ “ Working with Lee, Daul has shared her knowledge and insights with I Can With RA support groups and online. The website not only offers recipes, useful tips for working in the kitchen and tools that lighten the load of a cook with RA, but also links to other sources of related information, such as the Arthritis Foundation. “With the support groups, a person can say, ‘Yes I know someone else who has RA, and I don’t feel so alone.’ “ PK J www.icanwithra.com

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ble

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’ve been in a wheelchair for more than a decade, but only in the last year or so have I had a strange and powerful new urge: The urge to move. I’m not just talking about my legs (those fantasies I save for my dreams), but to take planes, trains and automobiles and see the world. I want a well-stamped passport. The great American hero, Dean Moriarty, in Jack Kerouac’s Beat classic, On The Road, put it best:

“We gotta go and never stop til we get there.” “Where are we going?” asks his pal, Sal Paradise. “I don’t know,” Moriarty says, “but we gotta go.” Exactly! I think this case of middle-aged wanderlust has something, if not everything, to do with my paralysis. Sitting still day in and day out is not all it’s cracked up to be. You need a countervailing force to feel energized, and logically, that force is movement. Tooling around the mall only gives you the illusion of going somewhere. Sure, it’s fun to zip along on the slick flooring, scaring old ladies, but you always end up back at the same parking space. When you’re in a plane heading from Los Angeles to Qatar, as I did recently with ABILITY editor-in-chief Chet Cooper, you aren’t experiencing the illusion of movement—you’re zooming, man. It’s not unlike the feeling you get when you ski down a mountain in an adaptive ski rig. If you could just combine these two sensory highs: flying long distances and skiing full speed, you’d be rocketing towards nirvana. One possibility is traveling to the all-indoor, all-fakesnow ski slope they’ve created in the Emirate of Dubai, right next door to Qatar. Sixteen hours on a plane plus a 12-hour time change for five minutes of pure downhill terror sounds like a dream vacation to me. Of course my urge to leave town might be some Freudian impulse to run away from paying bills and watching Jeopardy every night, but that’s about as far as my psychoanalytical skills go. I just want to keep it moving. So when I got a call out of the blue from a very up-market British magazine called Spa Business about an “undercover” reporting assignment, I hoped they’d say: “If you don’t mind going to Bangkok in October, with a two-day lay-over in Fiji…” Unfortunately, Thailand wasn’t on the itinerary: I only had to travel 50 miles, not 8,000. Even before they explained the assignment, I blurted “yes.” This may make me sound easy, but they had me at the word “spa.” The assignment was a gem: Spend a day at the sumptuous,

yet reasonably priced Glen Ivy Hot Springs in Corona, CA, in the desert east of Los Angeles. Then I was to report back on how they treat a person in a wheelchair. That was the undercover part. Since I’d become paralyzed, I’d never thought of visiting a healthy retreat like this. I don’t know why. It probably has something to do with the residual embarrassment of appearing unclothed or semi-clothed in public in a chair. You’re vulnerable enough as it is. Being naked and impaired sounds like a one-two punch to your dignity. Like a lot of paralytics, I had to be pushed into doing this, or lured by a British editor. I also had to convince myself: This wasn’t just an awkward, potentially embarrassing trip to a spa to get massaged, muddied up and moisturized, this was a job, an investigative assignment and I owed it to spa-lovers with disabilities everywhere to thoroughly check the place out. Besides, being a day off from real life, I realized I was also trying my hand at a burgeoning genre of journalism: accessibility reportage. This has been around in disabled-specific media for a while, but now it’s starting to expand. Like big-city restaurant reviewers, travel critics such as Peter Greenberg and those people who write those frothy, “What a soft mattress!” fluff pieces for Travel and Leisure, there is now a whole new area of general-interest, mass media coverage of places you can take a friend or relative who is disabled. So I was just dipping my toe in the pool, so to speak. About the time I visited Glen Ivy, for instance, the New York Times ran a long piece by restaurant critic Frank Bruni entitled, “When Accessibility Isn’t Hospitality.” It was an in-depth study of the many problems people with disabilities encounter while dining out in New York: from getting in the door to getting to the loo. In one Italian hot spot, a woman with a disability said that to get to the bathroom, it would “literally have required all diners to stand up and remove the outer chairs of all the tables.” Her solution was to “dehydrate” before dinner and avoid the john altogether. The article ended with a list of establishments labeled, “Top Tables for Diners With Their Own Chairs.” You can be sure that I, along with a lot of other chair users, will carry that list on our next trip to NYC. Some 50million strong, PWDs are not just a cause, we are a huge market, something both Bruni and at least those seven swanky joints in Manhattan know very well. Part of me, I confess, secretly hoped that Glen Ivy Hot Springs was woefully inaccessible and that the staff would ignore me, patronize me or otherwise treat me shabbily. That way, I could write a snippity, self-righteous rant against the universal view of people in wheelchairs, and those who are disabled in general, as secondclass citizens. ABILITY 49

But that didn’t happen. From the moment I arrived at the spa and noticed the dozen well-marked handicapped parking spaces awaiting me, to the moment I rolled back to my car feeling like a limp washrag, I was more than accommodated. I was treated with dignity, respect and wall-to-wall helpfulness, just like any other stressed-out, spa-craving supplicant on a family budget. Glen Ivy Hot Springs has been a commercial venture since the late 1800’s, but only recently grew from a modest mineral bath into an 11-acre complex surrounded by golf courses and born-yesterday residential communities. It is equipped with multiple pools and baths, a corps of masseuses and masseurs, a “Club Mud,” where you can be covered in restorative red clay, a restaurant, a grotto and a staff of the cleanest-cut young people this side of Disneyland. Jason was one of the staff members who made my own stay so memorable. He stepped up to show me around and point out the fully accessible lockers, showers, sinks and toilets. Except for a few steep inclines, the grounds were wheelchair-friendly. My first stop was a 50-minute olive sage “renew” massage. The table was instantly lowered to meet the level of my chair. The masseuse had no trouble figuring out my problem zone: the shoulders, of course, which are the focal point of aches and pains for someone who pushes a manual chair around all day. She did a great job and didn’t once mutter, “You poor thing.” Then Jason introduced me to a cheap item every spa should have: an old, fold-up, standard-issue wheelchair that you can probably pick up at a flea market for $25 and toss away when it rusts or breaks down. The moment I transferred into that relic, I could make a lot of stops at Glen Ivy with no hassle. I could roll into the steam room or shower without having to transfer to a hard surface. I could enter Club Mud, sit in a convenient area, coat myself (and the chair) with mud, dry in the sun and then roll into an outdoor shower stall and wash off. Finally, I could enter the underground grotto, have myself painted from head to toe in a pea-green concoction of sea kelp, aloe vera and other elixirs, sit in a hydrating chamber as it did its magic and then shower off again. That old chair became my constant companion throughout the day. Okay, Glen Ivy wasn’t completely accessible. None of the doors, for instance, opened automatically, making them a struggle to get through. And, ironically, the one feature of the place where no one could figure out how to get me in was the actual hot spring! It bubbled up into small individual pools that made any transfer from a wheelchair extremely difficult. If the staff had provided me with a solid chair of some kind, I could have lowered myself to the ground and just scooted into one of the hot springs outlets, but they couldn’t locate such a chair. In the New York Times’ piece I mentioned earlier, one resourceful New Yorker in a wheelchair hauled a 1250

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pound fiberglass ramp around with her to get up and down small flights of stairs in local eateries. If I had stuffed a simple metal folding chair in my trunk, I could have gotten into those medicinal waters. The lesson being buy a bigger car or truck for all of this lifeenhancing paraphernalia you should have on hand. The swimming and therapeutic pools had no ready access, either. If Glen Ivy was really on top of things, they would have installed a self-operating hydraulic lift to ease me into the water. Short of that, a simple ramp would have allowed me to roll in and out of the water in that utility chair. Of course, like the lady above, I could have supplied that ramp myself, another handy item for the back of the super-sized pick-up. These various stumbling blocks were upsetting but not that upsetting. I guess by the time I realized what I couldn’t do with ease, I had been subjected to so much de-stressing that I didn’t really care. On the other hand, if I had gone out there principally to take a soothing soak in the hot springs or a dip in a salt-water pool, I would have asked for my money back. So, I guess on the Accessibility Meter of 1 to 10, 10 being best, Glen Ivy garners a 7 plus, or maybe an 8. Jason, on the other hand, gets a full 10 and hopefully a nice bump up in his next paycheck. Spa Business seemed pleased with the finished article and I can only hope that it’s the beginning of a beautiful friendship. Certainly there are spas all over the Mediterranean that need to be critiqued with the cool eye of a globe-trotting paralytic. If not Corsica, how about a weekend trip to the new Paris Hotel in Las Vegas? Rumor has it they have both a state-of-the-art hydraulic pool lift, and a coterie of young lovelies in French maid outfits bringing you fresh towels. Okay, I made up that last part, but I won’t really know until someone sends me on a mission to find for myself. If I play my cards right, maybe some day I could become the Gene Shalit/Peter Greenberg of the field and proudly wear the moniker, Accessibility Critic At Large: Have chair, will travel. by Allen Rucker Allen Rucker is a regular contributor to ABILITY and the author of The Best Seat In The House: How I Woke Up One Tuesday And Was Paralyzed for Life, among other books. www.allenrucker.com For more info go to: www.glenivy.com

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n the background, a flute played in a sweet song about rainbows, as Rohan Murphy tapped the raw power of his arms and shoulders to raise and lower his body on a tableâ&#x20AC;&#x2122;s edge. Up down, up down. Then, he paused briefly to switch gears as his ripped chest muscles bulged through his sleeveless shirt. Next, he effortlessly lifted himself into a handstand, did a set of push-ups and then broke into a hand spin. Did I mention that all of this took place on a conference room table?

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Murphy, 24, was in the room to impress a group of suits at the advertising agency that ultimately green-lighted his recent Nike commercial. “It was like going to a job interview,” Murphy said about his demonstration via webcam. “They asked me if I could do anything athletically for them. So I hopped up on this big meeting table and starting doing a bunch of push-ups and handstand pushups just like I do in the commercial. I guess they loved it...” The former wrestler and current powerlifter admitted that it was surreal to be in the ad, a 34-second spot entitled “No Excuses,” which can be found on YouTube or the U.S. Paralympics website. “It was a dream come true to be in a Nike commercial,” he said. “Ever since I was a kid I’ve been watching (their) commercials on TV with my favorite athletes like Michael Jordan and Jerry Rice. So to say that I have my own … is unbelievable.” The ad was his first international media exposure. But then again Murphy is used to being in the lead. As a freshman in high school he went out for wrestling at the encouragement of his eighth-grade gym teacher, Ron Carteau. Murphy, who had both legs amputated when he was 4 as a result of a birth condition, won two matches as a 98-pound freshman at New York’s East Islip High School. Four years later he graduated with a 30-3 record. Then there was the day that he wheeled in to Troy Sunderland’s office at Penn State University and asked to be part of the nationally renowned wrestling team. He went on to win three matches during his time at Penn State as the only bilateral amputee in Division I. “He’s like a father figure to me,” Murphy said of Sunderland. “He’s helped me out a lot. He’s helped me in wrestling and in life.” As part of their training regimen, the wrestling team had to run up Mount Nittany—a local mountain near campus that rises 2,077 feet above sea level. The coaches said Murphy could opt out. Then 54

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they said he could just do half, and that would be fine. Then they ran out of words as they watched him complete the entire run—on his hands. One day, Murphy tried powerlifting. In his first competition, he set a national record. In the second competition, the 2006 IPC (International Paralympic Committee) Powerlifting World Championships in Korea, he earned the bronze medal in the Junior Division (22 and under) by lifting 281 pounds. Recently, he lifted 325 pounds. He wasn’t seeking to qualify for the 2008 Paralympic Games in Beijing, China—he’d already done that—but simply to challenge himself. “Still, achieving more than what he was capable of a few months ago, is a credit to him,” said Teri Jordan, the ability athletics coach at Penn State. “When he goes (to Beijing) he wants to do the best he possibly can.” Murphy is headed to the September Paralympic Games in Beijing with the U.S. powerlifting team. He qualified for the games—another first for Murphy—by being among the top 10 ranked powerlifters in the world in his weight class. “To be honest, three years ago I had no clue what the Paralympics were,” said Murphy. “When I was younger I tried disabled sports in Long Island, NY, where I grew up, and it just wasn’t really fun. It wasn’t competitive.” Murphy didn’t like the non-competitive aspect of the games where there were no hard feelings and everyone was a “winner.” “Sports isn’t about everyone winning,” he declared. “Sports is about a winner and a loser. That’s what makes sports so great, the competitiveness.” Murphy took up wrestling for the competition. The workouts buffed him up from a 90-pound teenager to a 125-pound chiseled man heading into this summer’s training. And it’s the workouts that have bridged the gap between his wrestling career and powerlifting, which he sees as his future. The athlete had no prior experience in powerlifting before his initial competition. He had only lifted weights. “The main thing I can take from wrestling is being disciplined with the workouts… and eating healthy,” he said. “Everything else—all the exercising physiology that you put into wrestling—is totally different from powerlifting.” The weight lifting goal for wrestling is to have less weight and more repetitions. For powerlifting, it’s the opposite: an explosion of power to lift the heaviest weight and then it’s over. So far, he’s bridged that gap. Youth is his advantage. He was the second-youngest powerlifter to compete in Korea, as well as last year’s Parapan American Games in Brazil, where he came in seventh place. Powerlifting, ability coach Jordan says, is full of 40- and 50-year-olds who continually get stronger 56

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as they age and progress in the sport. Another plus: Murphy’s got a superior support system in place. Mary Hodge, who coaches the U.S. Paralmpic team, has provided him with training techniques. He’s also received coaching from former Olympic athletes. While his Nittany Lion wrestling days may be over, Murphy continues to train on Penn State’s campus with former teammates, thanks to Coach Sunderland. Murphy earned a bachelor’s degree in kinesiology from the school, and is currently pursuing a master’s in health policy and administration there. “Rohan has made the commitment to being a great athlete,” said Jordan. “He wants it, he’s going to do his best to get it, but he’s not going to be upset as long as he’s doing his best. And I think that’s what each of us should strive for.” The jingle on Murphy’s commercial is addictive; you hear it once and it sticks. But when the ad stops, it’s not the music that the viewer remembers most, it’s Murphy. After completing his amazing handstand push-ups, he shakes the tension from his arms, springs up into his wheelchair and wheels down the hall. It’s a workmanlike demeanor, and that’s addictive, too. “He’s such a great inspiration to athletes around him as well as everyday individuals like myself,” said Jordan. “What heart! What desire!” by Josh Pate Josh Pate is a regular contributor to ABILITY Magazine and also works for Turner Sports. He’s covered NASCAR and collegiate athletics, and has written features on sport and disability, the Paralympic Games and veteran rehabilitation. He lives in Atlanta with his wife and son. U.S. Paralympics (with commercial) www.usparalympics.com Paralympics Bio olympic-usa.org/paralympics/39341_53224.htm YouTube (commercial) youtube.com/watch?v=qaXfFRx5ZWw

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’ve performed at clubs, colleges and conferences all around the country, but I’d never felt as moved as when I spoke to soldiers at Walter Reed Army Medical Center in Washington, D.C. Veterans injured in Iraq and Afghanistan go there to be rehabilitated. In a small way, performing for the brave men and women of the military made me feel as if I were serving my country. There was nothing heroic about what happened to me: I was in a car accident in high school, broke my neck and became disabled. It was a case of wrong place, wrong time. But to voluntarily put oneself in harm’s way, knowing the potential danger, is another matter entirely. My gift to these vets would be to offer a brief escape from the trauma they’d suffered: For 15 minutes, they could sit back and laugh. (Those too ill to join us at the show caught it on video monitors in their rooms.)

Dana Bowman served as emcee. He brought me and motivational speaker John Siciliano along. Dana is a double amputee who was named a Special Forces Soldier and a member of the Golden Knights, the elite parachute team of the U.S. Army. His previous presentations at Walter Reed have all been well received. Beyond frequent appearances there, he’s given more than 400 speeches over the last few years and has been featured in Sports Illustrated, Reader’s Digest and People magazines, and on such TV shows as Dateline, A Current Affair and Real TV.

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In 1994, Dana and Jose Aguillon, one of his Golden Knight teammates, were practicing a maneuver known as the “diamond track,” which calls for jumpers to fly away from each other for about a mile and then turn 180 degrees and swoop back in, crisscrossing in the sky. Dana and Jose had demonstrated the move many, many times without a problem, but that day, rather than crisscross, they slammed into one another at a speed of 300 miles per hour. Jose died instantly, while Dana’s legs were severed from his body, one above the knee and one below. After his wounds healed, Dana became the U.S. Parachute Team’s lead speaker and recruiting commander. His motivational messages have touched everyone who’s heard them, and demonstrate that people with physical challenges can continue to work and excel. As Dana finished up, he turned the room over to John, whom he’d met five years ago during one of his gigs. John, too, is very energetic and pulls his audience into his world using his acting talent, along with a compelling Power Point presentation. In high school, John and his friends left a restaurant one night and were blindsided by a car. Although no one died, John awoke in the hospital with a neck brace and tube in his throat so that he could breathe. As he lay there, an eerie feeling overwhelmed him: Something wasn’t right. Soon after, he learned that doctors had

had to amputate his right leg four inches above the knee. Before his accident, John had been a track star. Looking tragedy square in the eye, he learned to walk again, and then to run competitively, this time specializing in 100 and 200 meter sprints. He trained intensely and even earned an invitation to the 1996 Paralympics Trials held in Atlanta, GA, where he broke the event’s 200-meter record and secured a spot on that year’s USA Team. In the interim, he became a speaker traveling the country to tell people that there is life after a disability. He assured the Walter Reed audience that there are many individuals around the nation and around the world who face the same challenges that he has. Now his mission is to touch as many people—disabled and able-bodied as possible—by sharing his story. After John’s incredible message, I launched into my comedy routine with a disability joke: “I’m not going to move around too much on stage because, frankly, my wheels are killing me. I think I may have an ingrown spoke.”

know I was one of them. “When I was 18, I was injured in a military accident: As I was stalking my ex-girlfriend, I got blindsided by a Salvation Army truck.” I told them about the time my father saved me from drowning by taking his foot off my head. I talked about my life, my family and dating. “I’m so naïve,” I said, “that my girlfriend told me she wanted to ‘just do it.’ So I went out and bought her a pair of Nikes.” As I closed, the laughter and applause told me I’d done good. When it comes to the military, the last thing you want to do is bomb. That’s their job. After the three of us performed, we were presented with a certificate by Sergeant Segraves, who thanked us. I suspect the audience inspired us more than we inspired them. Since our injuries, we speakers have come a long way, and now the soldiers will have to find theirs. With guts and courage, I’m sure they will. Life’s sorrows are counterbalanced with its joys. The difference between those who embrace its challenges and those who get slammed is attitude. It’s the difference between remaining stuck and rolling forward.

Laughter filled the room. Then I went on… “Since I’ve been in a wheelchair I’ve noticed there’s nothing within walking distance.” I threw in a bit of military humor to let the audience

by Jeff Charlebois Jeff Charlebois is a public speaker, professional comedian and ABILITY Magazine columnist.

The ABILITY House program, working with Habitat for Humanity, ABILITY Awareness and ABILITY Magazine, reaches out to volunteers with disabilities to help build accessible homes for low-income families with disabilities. We are seeking corporations, foundations and churches to sponsor more homes. We can build in nearly 100 countries. Please contact us for more information. info@abilityawareness.org www.abilityawareness.org ABIL-

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ACROSS 1. Film where a blind man falls in love with an Indian woman (2 words) 8. Poe's story, "The ___ and the Pendulum" 10. For every 11. African American sprinter who upset Hitler by winning at the 1936 Olympics 13. "All you ___ is Love" The Beatles 14. Lance's machine 16. Story of a deaf boy who cannot speak but writes letters to his mother (2 words) 22. TV show honored for its accurate portrayal of a character with a disability: "___ my children" 24. Boxer's weapon 25. The people's legal name, John __ 26. President who served 4 terms and had polio 28. Medium like perception 29. Electronic communication 31. Tablespoon, abbr. 33. Tanni Grey's married name (outstanding Paralympic Games performer) 36. "Princess and the ___" 37. That guy 39. Mer or Ber ending 40. False collective belief 42. He could not read till he was 12 and went on to invent the electric light bulb 43. Raise in emotional state 44. Run ____ hip-hop group 47. www locations 49. "_____ and Bess" 51. State were Louise May Alcott wrote "Little Women" 52. See 56 across 54. Mini, for one 55. Bo Derek's number 56. ___ ___ person (goes with 52 across) 57. Move where John Travolta plays a character with amazing powers that no one can understand

DOWN 1. Movie about the true story of a 13 year old boy who had AIDS 2. Law and Order actor, with T 3. Act rudely towards 4. Night breathing problem 5. Place to meet Tiger? 6. Provoke 7. Approval 8. Movie starring Tom Hanks and Denzel Washington which deals with discrimination against people who have AIDS 9. Movie starring Anthony Hopkins centered around a circus employee struggling to overcome disability (3 words) 12. Neither's cousin 15. Top women's surfer, ____ Hamilton who lost her arm in a shark attack and became a champion after that 17. Excited state 18. Opponent 19. Eli Manning's org. 20. High flyers 21. Island, for short 23. ____ Lonely Boys 27. Entertainer award 30. Tatoo letters, often 32. Proposal 34. Connects with (2 words) 35. The wrong side of well-built.... 38. Poet who wrote "Paradise Lost" when blind 41. Total loss, abbr. 45. Clown 46. Shrek is a cool one 48. Actress, Lupino 50. Sheep like memory? 51. They are Blue in Vegas 53. Philosophical verb? answers on page 63 55. "Love __ love you, baby" ABILITY 61

n my wild, misspent youth I trod many paths and strove toward many goals. The hats I’ve put on and taken off include attorney, college professor, photographer, disability advocate, Capitol Hill staffer and White House aide. Yet it never occurred to me that I might one day rise to the lofty heights of judge in a West Texas Black-Eyed Pea Cookoff. This local tradition began generations ago with a rivalry between two writers who claimed to rustle up the best chili. Today, there are cookoffs for almost anything that walks, crawls, slithers, flies or is road-killed inside our state borders. For me the fun began shortly after I moved to West Texas. That’s when the International Black-Eyed Pea Cookoff came a-calling, and I was invited to decide people’s fates. The competition is held annually in the Terlingua ghost town area of the Big Bend. Proceeds benefit Terlingua High School. (After the judging, cups of peas are sold with a piece of cornbread for $1.) This year I was a judge at the 17th annual Pea-Off, as it’s come to be known. Raised in a family with a proud tradition of eating black-eyed peas on New Year’s Day, I am eminently qualified for my post. First, a bit about the people gathered around the pots: West Texas is divided into two groups: Those who live in Terlingua and those who don’t. The region’s primitive,

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remote nature attracts free spirits of the 60’s. You will find novelists, poets, artists, musicians, parole violators and those who’ve slipped quietly into the Federal Witness Protection program. The latter sleep like babies at night, confident they’ll never be found. In my first foray into Pea-Off judging, 14 Styrofoam cups were passed among the seven of us. We were given a plastic spoon and told to discard it after each taste of the numbered containers. However, after spoons fell into short supply, we were told to just “wipe them off with a paper towel.” I may be nearly blind, but I’m certain that several of the judges were using their shirttails, and at least two were simply licking the spoons clean(er). The culinary grades were: (1) awful, (2) poor, (3) fair, (4) good and (5) outstanding. That year, I determined that three were awful, four were poor, four were fair and three were good. None impressed me as outstanding. This year we had 24 entries, and the assault on my taste buds was unlike anything I’d ever experienced. I was only able to rate three of the entries good. The other 21 were so bad as to be nearly inedible. I am certain that one of the entrants seasoned his peas with paint thinner, although another theory is that the contestant boiled the peas in tequila. One Styrofoam cup contained unidentified ingredients that could only be reached by pressing your plastic spoon through a thick

white barrier that resembled albino silly putty. The concoction below seemed to be a combination of halfcooked black-eyed peas and fermented grass shavings. Either of these two abominations—the paint-thinner peas or the silly putty ones—could substitute for water boarding in a torture chamber. When I asked the judge to my right how he had rated the silly putty peas, he said, “Are you kidding? I can see, and I wasn’t about to sample that stuff.” When it was first created, the competition was between two pots of peas at the now-defunct Desert Deli Diner. You voted by paying a buck for either a cup from pot A or a cup from pot B. The cooks’ names were withheld until the voting was complete. In a time-honored Texas tradition, you could vote as many times as you wanted as long as your vote was accompanied by a dollar. This is also the method used in electing the mayor of Terlingua who, until his demise, was a beer-drinking goat. Maybe Billy is what was floating in that cup of goocovered peas.

by George Covington

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