US $4.99 $4.99 US Volume 2008 Sandra Lee Apr/May Lee Sandra 2008 Volume

MAGAZINE VOLUME 2008 SANDRA LEE APR/MAY THE VOICE OF OVER 50 MILLION AMERICANS 2 ABILITY 3 ABILITY ABILITY 3 EDITOR-IN-CHIEF Chet Cooper

MANAGING EDITOR Pamela K. Johnson

MANAGING HEALTH EDITOR E. Thomas Chappell, MD

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

CONTRIBUTING SENATOR U.S. Sen. Tom Harkin (D-IA)

EDITORS Dahvi Fischer Alaska Adventure Renne Gardner Sonnie Gutierrez Eve Hill, JD 7 HEADLINES — NY’s New Gov, Dancing with Marlee, Errata CVS Glenn Lockhart Josh Pate Denise Riccobon, RN 10 GREEN PAGES — Living With Ed, Fair Trade Goodies Maya Sabatello, PhD, JD Romney Snyder Jane Wollman Rusoff 13 BEST PRACTICES — Companies Doing It Right CONTRIBUTING WRITERS Courtney Gale 14 STARBUCKS — A New Perspective on Diversity Linda Boone Hunt Gale Kamen, PhD

Extremity Games How big is your brain? p.36 Laurance Johnston, PhD 18 PEPSICO — Effervescent Corporate Culture Andrea Kardonsky Deborah Max KIING TAH Everyone Gets to the Mountaintop Myles Mellor - Crossword Puzzle 22 S U — Paula Pearlman, JD Richard Pimentel ACCESSIBLE ALASKA — Cruising the Wilderness Allen Rucker 28 Kristen McCarthy Thomas Betsy Valnes

30 DRLC — Removing Barriers to Education HUMOR WRITERS George Covington, JD Jeff Charlebois 32 OUCH! — The First in a Series on Managing Pain All Access Aboard p.26 Gene Feldman, JD Paralympic Games Beijing WEB EDITOR 34 SENATOR HARKIN — Voting Access for All Joy Cortes

GRAPHIC ART/ 36 BIG BRAIN — Does Size Matter? ILLUSTRATION Scott Johnson Paul Kim 40 SANDRA LEE — How to Cook with Rheumatoid Arthritis Melissa Murphy - Medical Illustration PHOTOGRAPHY 48 ALLEN RUCKER — Ahhh! A Trip to the Spa Ski Utah Chris Apedaile Seen “Bob’s House”? p.18 Music Within OHAN URPHY Paralympic Powerhouse TRANSCRIPTIONIST 52 R M — Sandy Adler

WALTER REED — Performing for the Troops DIRECTOR OF BUSINESS AFFAIRS 58 John Noble, JD

MARKETING/PROMOTIONS 60 CROSSWORD PUZZLE — Guess Your Best Jo-Anne Birdwell Jacqueline Migell Andrew Spielberg 62 GEORGE COVINGTON — A Great Judge of Black Eye Peas PUBLIC RELATIONS

CONTENTS JSPR 64 EVENTS & CONFERENCES NEWSSTAND CIRCULATION Utah? Me tah! p.22

ABILITY’s Crossword Puzzle ABILITY’s John Cappello 74 SUBSCRIBE TO ABILITY MAGAZINE EDITORIAL [email protected] ADVERTISING DISTRIBUTION CORPORATE SHIPPING For advertising Warner Publishing Services 8941 Atlanta Ave. NON-PROFITS information e mail A Time-Warner Company Huntington Beach, CA 92627 [email protected] Faxon - RoweCom Library Tel 949.854.8700 ABILITY Awareness or call Services TTY 949.548.5157 Habitat for Humanity International 949.854-8700 ext 306 Ebsco - Library Services Fax 949.548.5966 Swets Blackwell PUBLISHER C.R. Cooper ABILITY Magazine is published bimonthly by C.R. Cooper, 8941 Atlanta Ave. HB, CA 92646 (ISSN 1062-5321) All Rights Reserved. Subscriptions: $29.70 per 1 year (6 issues). Periodicals postage rates at Irvine, CA and at additional mailing offices. The views expressed in this issue may POSTMASTER: Send address changes to ABILITY Magazine, Attention Subscriptions Manager, WWW.ABILITYMAGAZINE.COM not be those of ABILITY Magazine PO Box 10878, Costa Mesa, CA 92627; Volume 2008 Sandra Lee April/May Library of Congress Washington D.C. ISSN 1062-5321 Printed in U.S.A. © Copyright 2008 ABILITY Magazine 5 ABILITY ABILITY 5 6 ABILITY 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: I learned about government right here in this Legisla- David Paterson Steps Up ture. I studied the same issues and had the same experiences, hopes and frustrations as so many other New n the wake of Elliot Spitzer’s resignation, New Yorkers. I am chagrined at the high cost of education York inaugurated its first black head of state, for my family. And the prohibitive price of health care. I David Paterson. He’s the country’s first governor who is legally blind and the third black governor I have talked to New Yorkers for decades about the of any state since the Reconstruction era. Born in crumbling upstate economy, the crush of property taxes Brooklyn in 1954, he is the son of Basil, a former State and the lack of affordable housing. These are issues Senator who later served as Deputy Mayor and New that we will continue to focus on and address, but we York’s Secretary of State. can do more.

An early childhood infection left David Paterson with I have a vision for New York. It’s a New York where limited vision. He went on to graduate from Columbia achievement is developed only from hard work, where University and Hofstra Law School, has completed a doors are always open and where anyone can achieve New York Marathon and is an adjunct professor at no matter where they live. Columbia. He and wife, Michelle, have a son, Alex, 13, and a daughter, Ashley, 19, from her previous mar- Let us, right here and now, grab the unusual opportu- riage. Here is an excerpt from his recent inauguration nities that circumstance has handed us today, and put speech: personal politics, party advantage and power struggles ———————— aside in favor of service in the interests of the people.

he last time I was in this chamber I was gaveling in I have worked most of my life for New Yorkers and T for the State of the State, and Speaker Silver fought for New Yorkers. I believe that if we stand brought me in here to practice so I didn’t destroy any- together, our collective talent will bring us to a bet- thing in our first year. But in our second year, I said, ter period. ‘Don’t bother, I know how to do this.’ We don’t know the path yet. But that’s because we Apparently, I was about to bring the gavel down on a haven’t blazed the trail. And I think you all know that glass, like this one. I know a little bit about finding one’s way through the dark. The speaker at the last second grabbed the gavel away from me and told me in his own inimitable way, I will Let me tell you a little about myself. not allow you to turn the State of the State into a Jewish wedding. I was born in the borough of Brooklyn. I was educated on Long Island. Harlem is my home. This is where I In so many ways, we woke this morning to a not-so- learned love for family and appreciation for community. ordinary day. But in one way, we woke this morning to a New York dawn that is like every other one that I have confronted the prejudice of race and challenged came before it. For today, like we always do, we move the issues of my own disability. I have served in govern- forward. ment for over two decades. I stand willing and able to lead this state to a brighter future and a better tomor- Of course, I never expected to have the honor of serving row. Let me reintroduce myself. I am David Paterson as governor of New York State. This transition is an his- and I am the governor of New York State. toric message to the world that we live among the same values that we profess, and that we are a government of www.ny.gov/governor

ABILITY 7 NEW ACA CAMP Bigger and Better he Amputee Coalition of America (ACA) Sum- mer Youth Camp marks its ninth year with a T 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 MUSIC WITHIN Matlin’s Got the Moves The camp will be held July 20-24 with kids from 10 to 16 enjoying horseback riding, swimming, dancing, fish- o launch her Dancing With the Stars career, con- ing and more. They’ll also participate in team-building testant Marlee Matlin had been training several activities, which will provide an opportunity to learn T hours a day at this writing. Though none of this from peers and junior counselors who are also year’s batch of hopefuls had ever danced in the amputees. The Joy Outdoor Education Center of pro ranks, she had the additional challenge of being Clarksville serves as the host of this years’ event. deaf. But she’s said that has not been a problem. There are an estimated 70,000 children living with limb Though she’s never heard a single music note, she’s loss in the US, according to ACA, a non-profit organi- expected to step, twirl, dip, smile, clap, spin and jump zation that works for men and women who have experi- in time with the rhythm. For that, she relies on profes- enced an amputation or are born with limb differences sional partner, Fabian Sanchez. “This will be the second summer that we have a Junior ‘’He’s my music,’’ she says. Counselor Program, said Paddy Rossbach, ACA president and CEO. The six counselors are former campers; Some of the dances Sanchez modifies a bit so that he they are now 17 and 18 and have come back to volunteer. and Matlin are in more physical and/or visual contact. But he maintains that ‘’she’s got a natural rhythm and is The camp fee is $500 per child. However, no one will on time every single time.’’ be excluded because of a family’s inability to pay, Ross- bach said. Fee waiver forms are available. Sanchez, a dance instructor from Birmingham, AL, suggests that Matlin might be even easier to train than For an application go to: many who can hear “because she’s not trying to follow http://www.amputee-coalition.org/youth_camp_camper_2008.pdf the rhythm on her own.’’ For more information on ACA visit: Matlin is an Emmy-nominated TV vet who won the http://www.amputee-coalition.org Academy Award for best actress in 1986’s Children of a Lesser God. She is also a mother of four, including her TOY TEACHES KIDS: inspiration, 12-year-old daughter, Sara, a hip-hop dancer Do the Right Thing and fan of the show. oodwill Industries International and Learning ‘’I just want to be the cool mom,’’ Matlin says about Curve Brands have joined forces to create a 12- competing. G room dollhouse that promotes caring and sharing, good manners, responsibility around the house Her co-stars this season include radio host Adam Carol- and more. Coming this summer to a store near you, the la, magician Penn Jillette, pro football player Jason Tay- Caring Corners Mrs. Goodbee Interactive Dollhouse lor, tennis champ Monica Seles, Olympic skater Kristi will cost about $80. Yamaguchi, R&B singer Mario and actors Steve Gutten- berg, Shannon Elizabeth, Christian de la Fuente, Priscil- As part of the experience, children are encouraged to fill la Presley and Marissa Jaret Winokur. (Each week, Mrs. Goodbee’s “Carton of Caring” (the box that the someone gets voted off the show, until they winnow dollhouse comes in) with gently-used clothing and toys down to a winner.) they no longer need and donate them to Goodwill, a network of 184 independent, community-based organiza- Executive producer Conrad Green says assembling a tions in the U.S., Canada and 14 other countries. The diverse cast contributes to the show’s success. His team clothing and toys will be sold in its stores, and the pro- looks for contestants of various ages, sizes, abilities and ceeds will help fund the organization’s job training pro- professional pursuits. Heather Mills, who uses a pros- grams in the various communities it serves. thetic leg, lasted seven weeks last season. “Donating the things you no longer need is a form of ‘’It’s incumbent on everyone in television to try to open charity in which anyone, regardless of age, can partici- up television to people with disabilities,’’says Green. pate,” says George W. Kessinger, president and CEO of www.abc.go.com Goodwill Industries International. “Together, parents

8 ABILITY CAPTIONED CONVERSATIONS Sprint Adds New Bells & Whistles and children can explore how their donations go toward putting people to work and building stronger communities. new free web-based service from Sprint Web- CapTel(r) allows a person who can speak but has “Children can feel good because their donations will A challenges hearing over the phone to read word- help people earn a paycheck, which helps them support for-word captions of their calls on a web brows- themselves and their families,” says Kessinger. er. This new service is expected to help an estimated 23 million Americans with hearing loss, who may face Goodwill, which has 2,100 retail stores nationwide, also challenges hearing over the telephone. provides employment services, job placement opportunities and post-employment support. “We are always looking for ways to offer unique and www.shopgoodwill.com easy user experiences for our customers. This new solu- www.learningcurve.com tion from Sprint will offer the hard-of-hearing community the ability to enjoy the benefits of a natural phone BOOMERS VULNERABLE conversation by accessing real-time web-based cap- Group Underestimates Risk tions,” says Mike Ligas, director of Sprint Relay. ost Baby Boomers underestimate their risk of With the new service, users can make and receive calls acquiring a disability that would cause them to on their own telephone, cell phone, land-line or even an M miss work for an extended period of time, amplified phone. During the call, if they have difficulty according to a new survey conducted by Harris hearing what is being said, they can log into a dedicated Interactive on behalf of America’s Health Insurance website and read written captions of everything their Plans (AHIP). The study also found that Baby Boomers caller says. Captions appear virtually at the same time as are unaware of the most common causes of disability the person speaks, allowing users to enjoy a natural tele- and don’t seem to be too concerned about them. phone conversation.

This lack of awareness presents a significant threat to This new service is available almost anywhere with a their continued financial security, said Karen Ignagni, phone and internet access on a computer. Even using president and CEO of AHIP. “When individuals under- amplified phones, the WebCapTel(r) will capture the estimate their risk of disability, they are less likely to audio of the person speaking to the user and will change protect their income and are more vulnerable to the spoken sounds into words that can be read. When dis- financial hardship that a disability can cause.” played on a web browser, the user can change the font size, color and even background. When a call is com- More than a third of Baby Boomers think the chances of pleted, the user can save the captioned conversation for becoming disabled due to illness or injury is five per- later review, allowing the user to concentrate on being cent or less, a slight majority think the chances are 10 involved in the conversation. percent or less, and two-thirds think the chances are 20 percent or less. In reality, a worker has a 30 percent “WebCapTel puts people with hearing loss back in con- chance of acquiring a disabling injury or illness causing trol of their own telephone conversations—any time, him or her to miss three or more months of work before anywhere—by capitalizing on the convenience and reaching retirement, according to the Social Security prevalence of the Internet,” states Robert Engelke, pres- Administration. ident of Ultratec, Inc., the company that developed Cap- Tel technology. The survey also found that nearly half (47 percent) of Baby Boomers say they are not too concerned about the “It gives people with hearing loss the confidence to rely prospect of a disabling injury or illness. on their telephones again, leveling the playing field for professional opportunities, in social situations, and in One of the reasons Boomers underestimate their risk is matters of personal safety.” the mistaken belief that injuries cause more disabilities than illnesses. According to the survey, Boomers believe The service is free to Sprint customers anywhere in the the most common causes of disability are back, muscle or United States and within the US territories. However, joint problems (26 percent), injuries on the job (18 per- calls to or from international locations, such as Canada cent) and injuries off the job (16 percent). However, or Mexico, are not applicable. research shows that the most common causes of disability are illnesses such as cancer, heart disease and diabetes. To learn more visit: www.sprintcaptel.com The survey found that most Baby Boomers accurately believe they are more likely to acquire a disability than Correction: In our last issue, we misquoted CVS’s Eileen premature death and that most disabilities occur outside Howard Dunn. We wrote that her programs aim to help children of the workplace. “learn, play and feed,” when she actually said that they are designed to help them “learn, play and succeed.” The error For more on the survey findings go to: occurred in transcription. http://www.ahip.org/content/default.aspx?docid=22626

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 Shave 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 envi- ronmentalist/uber-greenie Ed Begley, Jr. and his wife of 13 years, Rachelle Car- son, 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 our- selves 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 par- ticularly 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 shower- head, 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 ABILITY to remember that—just like your furnace—it needs SUSTAINABLE FLOWERS some yearly TLC. Organic flowers are grown without most synthetic pesti- Be sure to check out your unit’s air filters once a month cides and fertilizers or genetic modification. Growers and clean or replace filters, as necessary. Keeping filters also emphasize the use of renewable resources and con- clean can cut energy consumption by 5 percent to 15 serving soil and water to enhance environmental quality. percent. Also, make sure that the drain channels and coils on outdoor units are not clogged. Veriflora flowers are grown using water-, soil-, and habitat-conservation measures. The use of pesticides To keep cooling costs down, run the forced-air system’s and fertilizers is also restricted. Farm laborers are com- fan—not the air conditioner—to maintain a comfortable pensated and protected according to international, temperature. Simply flip the thermostat to “fan only” to national or local standards. recycle air throughout the house. As with the chocolates, Fair Trade flowers are produced Also, while I can only guess (pout) how tempting it by farmers and workers in developing nations who must be to crank the A/C when it’s 90-plus degrees out- receive a fair price for their product, and trade is direct. side, keep the thermostat at 78 degrees when you’re Soil and water conservation measures restrict the use of home. When no one will be there, set the thermostat at pesticides. 85 degrees. That way, you reduce the need for air condi- tioning, save energy and have extra cash on hand for Biodynamic flowers are grown without the use of syn- your Labor Day barbecue. thetic pesticides, fertilizers, genetic engineering or animal by-products. Additionally, flowers may not be Lastly, if you have ceiling or other fans, turn them on. grown in areas subject to strong electromagnetic fields. The blowing air can make you feel five degrees cooler. Fans also use a lot less electricity than air conditioners! If you live in a temperate area, buying local flowers, which may or may not be certified, is another option. To AHHHH... L’AMOUR... find out if there’s a seller near you, check Local Harvest, a searchable database of local agricultural products. 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— by Kristen McCarthy Thomas you know—responsible while kissing your sweetie’s derriere? To learn more about these labels, visit the eco labels www.greenerchoices.org SUSTAINABLE CHOCOLATE For Chocolate: Organic chocolate is produced without most synthetic www.tranfairusa.org pesticides and fertilizers or genetic modification. Grow- www.rainforest-alliance.org ers also emphasize the use of renewable resources and www.sustainabletable.org/features/articles/chocolate conserving soil and water to enhance environmental quality. Search for organic chocolate online or look for For Flowers: www.OrganicBouquet.com options at natural and gourmet grocery stores. www.harmsvineyardsandlavenderfields.com www.DiamondOrganics.com Fair Trade chocolate is produced by farmers and work- www.veriflora.com ers in developing nations who receive a fair price for www.1800flowers.com their product. Trade is done directly between farmer- owned cooperatives and buyers. Crops are grown using soil and water conservation measures that restrict the Kristen McCarthy Thomas is a public relations specialist with an integrat- use of harmful pesticides. ed marketing communications company in Southern California. She leads the company’s Environmental and Sustainability Task Forces, and Rainforest Alliance chocolate is grown using integrated helps the company’s 70-plus associates “green up.” pest-management systems that limit the use of pesticides and fertilizers. Crops are grown using water-, soil- Kristen writes the www.just2hands.blogspot.com, which we’ll occasional- ly excerpt here. She is writing a book on how parents can reduce their and wildlife-habitat conservation measures. Farm labor- family’s environmental footprint through inexpensive (if not money-sav- ers are paid salaries and benefits equal to or greater than ing), easy-to-understand steps, as well as how to pass the torch of envi- the legal minimum wage of their countries. ronmentalism 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.”

Anyway, what was that police officer clown thinking? This particular clown was a woman, FYI. That’s right, a sense of humor opens doors and welcomes peo- policewoman. So this witch-in-blue tosses this fellow on ple into your life. It breaks down barriers and the ground. What for? It wasn’t like he banged her in Acan even lead to a date. When I see someone I’m the shin and asked her for a date. 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 video was, to say the least, disturbing. I thought I the back of my chair reads, HOW AM I DRIVING? was watching an old Andy Griffith episode where CALL (626) 446-77... If she calls, I know she has a Deputy Fife pulls up his pants and says in his high sense of humor. pitched voice, “Ange, you can’t trust these gimps in wheelchairs; they’re mighty sneaky. What we got here is Laughter puts people at ease, especially those who may a faker!” Next thing you know, old Barney dumps him be uncomfortable interacting with a person who has a on the floor, next to Otis, while Goober stands wide- disability. (And we’ve all met those types!) When I eyed at the door singing out, “Goooolly!” make fun of myself, others realize that I am comfortable in my own skin, and they’re more likely to loosen up. I That policewoman was an animal. Where did this pig might lead off with something like: “Every time I go out get the idea to act like a jackass? I haven’t read the with my friends, they put my wheelchair in the front Americans With Disabilities Act from cover to cover— seat and me in the trunk. What’s up with that?” Then I though I’m sure it’s a page-turner—but I’ve got a might follow up with, “A lot of people ask me if sex is crazy suspicion that chucking people out of their still the same as it was before my injury. I say, ‘Hell no, wheelchairs is a no-no. Maybe there’s some new prices have skyrocketed!’ “ wacky law that says you can only read someone their rights if they’re floundering on the floor with three I have been a professional “sit down” comedian for broken ribs. Come on, you can’t treat human beings more than 20 years, and part of my routine deals with like that—only family. disability-related issues. When people come up to me after a show and want to tell me a joke rather than ask I’m curious to hear her defense. Did she recently switch what happened to me, I know they’ve looked past my to decaf? Did she need an extra set of wheels. I can disability and focused on my humor. hear her now: “Well a call came in for a 402 in progress, and we were out of squad cars, so I figured I Humor also helps get me through the day, which is could borrow the wheelchair and make a siren sound more challenging for those of us who are disabled. with my mouth while I pursued the robber. I figured the Some unforeseen headache often arises: I fall out of gimp could chill on the filthy station floor ‘til I got back my wheelchair; I get a flat tire; my seat cushion gets in a couple of hours.” punctured… It’s not pretty, but then again neither is Tori Spelling, and somehow we’ve managed to put up Hey Dirty Rotten Copper, we’ve got murderers, rapists with her all these years and drug dealers ruining our neighborhoods. Chase after them! You should beat down the Crips instead of Humor is important in a relationship, too. It’s funny to the cripples. Starsky and Hutch would both be ashamed look at the other person’s face when you’re making of you. 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 That’s all for now folks. Please don’t forget to tip your backbone then you’re going to run into trouble. Go waitress on the way out. ahead have some fun. If your wife gets mad at you, cut her hair while she’s sleeping. That stuff cracks me up. “Ham on by Jeff Charlebois Really, it’s good, clean fun for the whole family. a Roll”

12 ABILITY ABILITY 13 COOL BEANS thing is totally accessible, and in your own language, it Diversity Brews at Starbucks makes a big difference.

n the retail side, Starbucks is known for making a Cooper: That’s true. Royal Caribbean even taught their tasty cup of joe, teaching us a sprinkling of Ital- staff some sign language. There were a lot of challenges ian and retailing everything from mugs to music because there were many languages on that ship. As you O know, there’s American Sign Language, Universal Sign to books. On the far side of the counter, they get kudos for working in harmony with the world’s coffee growers, Language and several others. It was fascinating to as well as for being an employee-friendly corporation. watch and try to communicate, across the different lan- (How ‘bout that health insurance for part-timers!) guage groups.

Recently we caught up with the Seattle-based compa- Down the line, do you think of having your partners ny’s Laura Swapp and Marthalee Galeota. Swapp is the take sign language classes internally, so they can global director of Diversity and Inclusion, while Galeota respond and communicate to partners or customers is the program manager of Accessibility. We spoke with who sign? them about Starbuck’s expansive concept of diversity. Galeota: At a lot of our stores where there are deaf Chet Cooper: Let’s talk about what you might consider baristas or deaf store managers, some partners do get “best practices” for Starbucks. intrigued and take classes on their own. Sometimes a local group will teach sign language. In Canada, we Marthalee Galeota: For us, the key thing is not to look at connected with the Canadian Helen Keller Center, and disability or accessibility as a stand-alone, but to look at they actually provided classes for our people. it more broadly throughout the entire company. If we design a product, a program, a DVD or a service, then On occasion customers have come in, and when they we use universal design (barrier-free) approaches and realized that their barista was deaf, they’ve gone home, think through the different aspects of disability early in gone online and learned how to sign the name of their the game. That way we can bump up the company’s drink. Then they’ve come back and signed it to their ability to engage a broader scope of people, whether it’s barista. So definitely, the culture and language is one customers or employees. We’ve also set the stage for that we support and encourage people to understand on someone who might be aging or in an accident or other- a deeper level. I do some of the interpreting here at Star- wise become disabled-temporarily or permanently-to bucks and coordinate our interpreters. have a place that is comfortable and accessible. Cooper: I’m not sure if you are aware of this, but with Laura Swapp: One of our guiding principles is to Canadian Sign Language, they have to add an “Eh?” to embrace diversity as an essential component in the way the end of everything. we do business. We define diversity as encompassing all the things that would touch equal opportunity, inclusion (laughter) or accessibility. And so we build accessibility into the platform of our larger diversity efforts. Galeota: We also have a service-animal policy and classes on accessibility and disability here at our build- Cooper: So you’re tapping a model similar to what’s ing, including accommodating members of the deaf being used in the housing market, where they talk about community. We’ve made sure that our video and Inter- people being able to age in place. But you’re using uni- net news broadcasts both have closed captioning. We versal design in an even broader context for both did a pilot in one of the stores using Braille and large employees and customers, right? 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 The other thing that we have here in this building is a net- deaf community, we’re exploring a deaf-friendly work work of partners who have identified themselves as hav- environment, and how we might promote that. So when ing a disability or who want to be an ally for accessibility. we have multicultural marketing or a multicultural ini- They’ve gotten together and identified themselves as the tiative, we want to make sure that we also include deaf Starbucks Access Alliance to help guide the company people within it. around issues relating to disability and accessibility.

Cooper: That’s interesting. I was recently invited on a trip Cooper: Starbucks appears to be doing more than many on the largest cruise ship in the world. The voyage was other companies that we’ve spoken with. How are you chartered, and nearly everyone on the ship was deaf. so effective?

Galeota: I had friends who went on that cruise. They Swapp: Marthalee has brought us a lot of expertise and loved it. You know, when you’re in a place where every- served as the architect of our plan. I think we’re also a

14 ABILITY 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 disability- friendly environment.

Universal Design by Tony Gale We’re inquiring about education and awareness opportunities. For us that could be offering specific courses such as disability etiquette, deaf-friendly culture or inte- bit different, because, as gration into other core areas that we believe would we mentioned earlier, enhance awareness. Marthalee reviews all the marketing we consider accessibility that leaves the building from an accessibility standpoint. a part of diversity. So, what we would say to other companies is to recognize that increasing accessibility and diversity require Cooper: Right. For pulling multiple triggers. years there’s been a push by advocates to Cooper: You just had a shift in leadership at the top. remind companies that How does that affect your division? disability should be included in diversity. Swapp: We feel really optimistic about the support for Sometimes they think only in terms of certain accommo- diversity work with this leadership team. dations when a person is hired, but not much beyond that. So was that actually a part of the charter of the Cooper: Is there anything else that you wanted to talk company when it was founded? about or address?

Swapp: No, diversity became one of the guiding princi- Galeota: Just this year, (chairman and CEO) Howard ples after the company had been in existence for a while. Shultz participated in Great Hires, a video that show- But we now see it as a critical component to our work. cases the benefit of employing individuals with significant disabilities. The project was produced by the King Chet Cooper: Are you involved with the Business Lead- County developmental disabilities group, King 5 TV ership Networks (BLNs) in your area? and the Washington (State) Initiative for Supportive Employment. The video highlighted three different Marthalee Galeota: Yes, we’re new board members with companies, including Starbucks, which are reaching out the U.S. BLN. to people with disabilities in employment. It’s been seen nationwide, in Europe and in Australia. It’s even on Cooper: Do you know what your role will be? YouTube, and encapsulates our commitment.

Laura Swapp: We’re still figuring that out. We’re pri- In our stores, in particular, we strive to make everything oritizing the national relationship and figuring out accessible to all of our customers. Usually they order a what we’re doing locally. Our strategic partnership ini- beverage, wait while it is being made and then pick it tiative defines what organizations we engage with, and up. But each of our stores has a sign at the register that how we bring them into partnership with the Starbucks offers customers assistance if they would like us to carry family at multiple touch points. So this is one of the their order to their table. Customers using wheelchairs relationships within that program. have let us know how much they appreciate this. One letter of thanks came all the way from a customer in We will continue to look at how we partner with various England, who wrote: “I am very restricted in mobility communities: African-American, Lesbian/Gay/Bi/ due to severe arthritis. The service received was excel- Transgender, Latino, disability… There are other orga- lent without a doubt.” nizations that we’ve worked with or will work with to determine how we move forward in this phase. Closer to home, one of our baristas was searching for Marthalee will identify what the multiple touch points an avenue to reach out to the community. Since Star- will be, and how we will roll those out. Obviously, bucks is an avid promoter and supporter of literacy, the headquarters is just one small piece of our world, and barista came up with the idea of holding a monthly it’s really more about how we engage our field opera- Children’s Story Hour and partnering with the National tions in these partnerships. Braille Press by using their selections from the Chil- dren’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 Leed model. He’s on the board with the national group to a different level. Children and parents gather each and is working to get more of a universal design, rather month to enjoy the stories that the barista reads to them than just the (less stringent) ADA features that you have in Braille. to follow. The Leed model is about building in a way that is environmentally friendly. Cooper: Can you talk a little bit about how you approach accessibility for both consumer and partner Cooper: Then you’re also looking at the products used when you build out a new retail store. and the energy demands?

Galeota: In the US, we follow Americans With Disabili- Galeota: Right. It’s all of that: the energy, the lighting, ty Act guidelines. The aisles in the stores are sometimes how you take advantage of the sun or the way the store an issue because things get moved and baskets of coffee is oriented on the land that you have-all of that. That beans are here and there, which makes it a little bit diffi- has already been built into the Leed model. What has- cult for people to come through who might be using n’t been there is the more holistic, universal accessibil- wheelchairs or canes. So in training baristas, we high- ity features. light accessibility so that people realize they need to keep aisles clear. Cooper: In our Green Pages section, we write about how a healthier planet leads to healthier people, There’s also a table that’s a bit oversized for people because a lot of what’s going on in the environment con- who use wheelchairs. It used to be a bit taller with a tributes to disabilities. Regarding recycling, have you decal on it that said: For our disabled customers. But it looked at a program where people bring their cups back stuck out like a sore thumb, so now it’s the same height in and you recycle them? as the rest of the furniture and blends in. The verbiage on it now reads, For customers with disabilities-using Swapp: That’s something that’s handled on a market-by- people-first language. market basis. A lot of municipalities don’t have the ability to recycle on a commercial level. But we do back-of- Cooper: Anything else? the-house recycling in a majority of our stores, where space and facilities permit. Galeota: Also, the “hand-off plane”-where customers’ beverages and foods are placed-has been lowered in Galeota: Any other questions? new stores. When it was higher, people of short stature or people in wheelchairs would have difficultly getting Cooper: Yes. Can I get a nonfat soy.... their drinks. Our drive-throughs are still a place where you order by talking into a little machine, and the (laughter) 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 For more information about the company go to: order from there. They can write out what they want or www.starbucks.com communicate however they choose. To watch the Great Hires video, visit: http://www.youtube.com/watch?v=VPXiIYz4uw0 One of our corporate architects is very involved with the

16 ABILITY ABILITY 17 18 ABILITY uring the recent Super Bowl, millions of viewers here, so why would we count the number of deaf vs. caught a Pepsi commercial, one that some say hearing? I’m one of Jehovah’s Witnesses, and we sup- Drepresents an historic first. The unusual ad fea- port all kinds of languages. So it was an outgrowth of tured a silent, 60-second joke: Two guys drive to their our work in that community in terms of education, and I friend Bob’s house to watch the big game. Once they would say there’s probably now a hundred or so congre- get to his street, neither remembers his address. So they gations across the U.S. that are conducted entirely in sit in the car arguing in sign language until one of them sign language. gets a clever idea and lays on the horn. One by one, the houses light up-except for Bob’s. Cooper: You say “now.” Do you think you were one of the first? Clay Broussard, who plays Bob, also developed the commercial and has worked for PepsiCo in Dallas for Broussard: I think we were among the first 40. 27 years. Though he is not deaf, the two actors who play his friends, Brian Dowling and Darren Therriault, are. Cooper: So did that experience draw you into what was They’re also Broussard’s coworkers and members of going on within your work? PepsiCo’s EnAble, an employee network for associates with different abilities and for caregivers. The three- Broussard: What happened was a local chapter of year-old organization was founded to influence and pro- EnAble formed here in Dallas, and I thought: This vide guidance to the company, which also owns Frito sounds pretty cool. As I have some experience with this Lay, Gatorade, Tropicana and Quaker, so that people aspect of diversity, why don’t I see what I can con- with different abilities were included at all levels. Now tribute? I joined and started listening to the goals and more than 300 PepsiCo associates strong, EnAble has missions that EnAble had locally. You may not have chapters in New York, California, Ohio, Washington, heard this, but EnAble wants PepsiCo to be the brand of Arizona, Florida and Texas. choice and the employer of choice among people with different abilities. And so we talked about objectives, Chet Cooper: How did you get involved with EnAble? such as accommodation and acceptability, which foster the conditions for being an employer of choice. Clay Broussard: I have some familiarity with deaf culture, so EnAble interested me; I joined to see what I Becoming the brand of choice is more esoteric for peo- could contribute. We have a real culture of diversity ple. How do you get to that? You can do it through tra- and inclusion among our various employee networks ditional means, such as participating in Multiple Sclero- at Pepsi. sis walks and activities such as that, but I thought: How can we bring it into marketing and advertising and real- Cooper: How did you get familiar with the deaf culture? ly demonstrate to the outside world what our culture is all about at PepsiCo? Because I’m familiar with the deaf Broussard: My wife and I attended a church where culture, I thought: Let’s borrow a joke from it and tell it everything was entirely in sign language for seven or the PepsiCo way, featuring our products and our people eight years. There was no voicing of anything at all. So and do it in a language that the rest of the world can get that was a real immersion. and find humorous.

Cooper: How did you choose that particular church? Cooper: Did you run into any bottlenecks within the company? (Sorry) Broussard: In the congregation that we were part of at the time, there were a couple of deaf people and there Broussard: (laughs) As a soft drink company, we try to was some interpreting. The deaf people became our avoid bottlenecks. Fortunately, everybody from the top to friends and taught some of us sign language. As that the bottom of this organization who heard about the con- group grew, there was enough people to form a new cept was intrigued by it. For some, it was a little esoteric, congregation where sermons could be held completely so we had to make a demo version. But once we got the in sign language, and where the topics would be demo finished, people could see it, and they got excited. addressed directly in the native language rather than interpreted. Sign language interpreting is not a direct Cooper: It became tangible. So how did you make the way of communicating with deaf people. demo?

Cooper: In the new congregation, what was the percent- Broussard: First I hired an artist to do a storyboard of age of people who were deaf, and what was the percent- the ad concept. We then took the storyboard and floated age of people, such as yourself and your wife? it past deaf employees inside PepsiCo to say, “What do you think of this? Is it right? Does it match the culture? Broussard: We talked about keeping track, but con- How would it be received by both the deaf community sciously decided not to because we figured we’re not and the hearing community?” This group remained on counting how many black people or white people are 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 mean- time, 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 Broussard: It struck me what a large percentage of the exploring. Tell me what your advice and counsel would community would identify with the ad. We wanted to be.” And they gave us some great advice about focus- tell a story that featured diversity and inclusion in a way groups studies and achieving authenticity and things that would appeal to a broad audience and in a way that like that. So we did focus groups and asked maybe 10 or was humorous. 12 questions to get feedback. Nearly all the survey responses we got were incredibly positive, with less Cooper: I think humor is a common denominator. than three percent coming back with anything negative. Broussard: On the business end, we figured: “This has a Cooper: Those were probably the people who fell asleep classic element of typical PepsiCo advertising: fun, during the focus group. humor and a good product.”

Broussard: (laughs) So then my senior executive Cooper: What other activities are you working on? allowed me to go forward with the demo. I hired a local video production company to do it, and we used all Pep- Broussard: There are some things that I’m working on. siCo employees. The hardest part was convincing my We had a large company reach out to us after the ad wife to let me use our house. was shown, saying, “We’re interested in talking about accessibility awareness, would PepsiCo consider Cooper: Was that your house in the commercial? working with us on that?” So that’s something we’re discussing now. Broussard: No, we only used it in the demo, which was a bit different. In that version, we started inside a house Cooper: That’s interesting, that you might provide and showed them watching a game. After we shot the awareness training to other companies. demo, my senior executive presented it to the senior executive level team, and there was immediate enthusi- Broussard: I’m currently working with the Dallas May- asm. They green-lighted the project and said, “We want or’s Committee for the Employment of Persons with to fast-track this to the Super Bowl and give it as broad Disabilities-a forum of businesses in the Dallas metro- an audience as we can.” plex - to determine how to create awareness of this topic inside our community. Last year we sponsored a break- Cooper: And the rest is history… So what’s next for you? fast for local area HR people on the topic of “onboard- ing” persons of different abilities. There are other things Broussard: I’ve been asked, “Are there follow-up con- I’m working on, but can’t talk about yet. cepts?” There are a couple of concepts we’re considering. I’m still a little new to the mysteries of marketing. I The chapter of EnAble that I’m with had a kickoff

20 ABILITY 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 She said she tried to ski while focusing on her loving all about hitting the slopes. Each morning Jessi- voice, which was helpful. But when she engaged her Aca “Taskmaster” Kunzer got us up, out and onto show-off voice, she found she skied faster. So with my the mountain. We skied all three days of our journey. show-off voice egging me on, I tried to keep up with the We also changed resorts all three days. duo, but they flew ahead. Show offs!

“Did you enjoy the ski lodge?” she’d ask. “Great, then Though I was relatively slow compared to them, I you’ll love the next one! Get your things. We’re leaving.” zoomed pretty fast by my own standards, so maybe the voice was working to an extent. But I’m not that experi- Of course, Jessica said it all in a nice way. Besides, she enced. Although I skied a little during college and at had to keep us moving, as there was a lot to see during events connected to this magazine, it’s probably been this Ability Awareness tour, sponsored by Ski Utah. The only a little over a dozen times altogether. point of the tour was to promote accessibility on the slopes. Skiing is available to everyone, the National The next day, Snowbasin. Jessica paired me with Chris Ability Center in Park City is there to help. Waddell a paralympian and five-time gold medalist. (People named him one of “The Fifty Most Beautiful Day one, Park City Mountain. I met Danelle D’Aquan- People in the World,” and Skiing called him one of ni, a skier who is legally blind and training for the Para- “The 25 Greatest Skiers in North America”) I skied lympics, along with Sally Tauber, her ski guide. At a behind him as well, trying in vain to pick up tricks of recent retreat D’Aquanni learned that we each have the trade. 99,999 voices in our heads. These inner chatter boxes include the voices of kindness, anger, mourning, love Building on my shaky confidence from the first day, I and showing off. tried the mid-lift for the newly marked slalom course. I had a blast carving turns and hitting gates for the first

22 ABILITY Chris Waddell

time. After a couple of runs, Chris and Jessica, an I could only stare up the slop to see how high we were excellent skier herself, wanted to go to the start of the going, as the gondola operator continued on about the women’s Olympic downhill run. level of risk and how, at this elevation on the mountain, I’d have to pay for my own rescue. Then he asked if “Hey, it’s the women’s run,” they said, by way of talking anyone wanted to go back down. me into it. It was a challenge, but I got through it. Next, they wanted to ski the men’s Olympic downhill run. That’s when somebody—could it have been, um, Jessi- ca?—said, “Nobody’s going down in the gondola.” “Hey, sure,” I said, as if it were no sweat. As the door opened, I gulped, trying to keep my eyes Getting there required a separate gondola to the top of directly in front of me. The beautiful view included the mountain. Until that point, Chris had no problem parts of four states, but I hardly noticed because I was with accessibility: He would ski to the chairlift and get dizzy and nauseous. Sensing my panic, Chris and Jessi- on while remaining in his sit-ski. But accessing the gon- ca said, “You can do it. You’re a good skier.” dola, however, was a slightly different story. We had to unhook the ski portion of his gear, and needed several Chris, reattached to his sit-ski, was the first down the “cat- people to help us carry him up the metal stair system. walk,” a narrow strip that leads to the start of the men’s run. Swoosh! He was down the mountain in a flash. In the gondola I sat backwards, looking down as we climbed ever higher, struggling with my fear of heights Before Jessica took off, she turned to me briefly and by pretending to study my ski boots. That’s when I was said, “Follow my lines.” I knew she was going to fly outed: The gondola operator asked if there was anyone down the mountain. At that moment, my showoff voice who hadn’t been to the top before? I raised my hand and retreated behind my fear voice. And the latter was loud. looked around. I was the only “virgin.” 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… legitimate city. It’s done a great job. These days there’s talk about the first indoor ice climbing facility. World I did a half slide down the catwalk to the beginning of renowned climber, Jeff Lowe, supports the facility and the run. It seemed impossibly steep. My strategy was to plans to teach the sport there to people with MS. ski side to side. Off I went. Down I went. Down I went again. Falling and falling. Sliding on my back. At one On our last day we skied Snowbird, and met up with point, I wondered Will it ever stop? two families who were taking a class through the Wasatch Adaptive Sports program. One family had I finally stopped, but by then one of my skis had gone triplets, and two of the three had cerebral palsy. When missing. That’s when Jessica kindly swooped down and they first entered the program, the instructor said to their reunited me with it. I was happy to be saved, but feeling parents, “Tell your sons to raise their right hands to go embarrassed to look like a scary klutz in front of my host. right, and their left hands to go left.” But the parents said, “They can’t raise their arms.” Food is always a good salve for the wounds of the slopes. Fortunately for me, Snowbasin has two five-star Peter Mandler, executive director of the program, con- restaurants, accessible ony by chairlifts. The best part of tinued to work with them, putting the children on a the hour or so of great company and dining was the time mono ski and tethering them. Another instructor stayed sitting still so that my calm voice could return. in front to keep an eye out. As they skied, the kids actually started to move their arms for the first time. When After lunch, Chris wanted to go back to the top again. they wanted to turn, they indicated it with their arms. Suddenly, I was in the mood to take pictures. Hey! You They skiied right on down the bunny slope with wide can’t ignore your photo-taking voice. and wonderful grins on their faces.

Chris flew down the mountain again as I snapped away. We then met up with Gael Yonnet, a young French physician who’d been in a snowboarding accident, bro- That night we went to dinner with a number of people ken his back and become paraplegic. His experience led from Ogden, UT, where we had a great discussion about him to change his focus to treating those with spinal how the city is rejuvenating itself. Downtown Ogden is cord injury. He was just getting back in the game and where the Union Pacific met the Central Pacific Rail- was inspired by the sit ski experience. road, thus completing the trans-continental railroad. Of course, back in the day, that came with a price: prostitu- On the way home I slept and, lucky for me, my 99,999 tion, opium dens, a fair number of saloons. voices liked nap-voice as well. by Chet Cooper Ultimately, the town had to clean up its act to become a www.discovernac.org www.wasatchadaptivesports.org www.skiutah.com 24 ABILITY ABILITY 25 26 ABILITY nroute to our seven-day Alaskan cruise, we flew from L.A. to Seattle a day early to enjoy a stay at Ethe 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-navi- gate 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 peo- ples’ rich culture, including carvings of beautiful soap- stone 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

28 ABILITY ABILITY 29 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 Igreater 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 open- minded, 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 stand- ing 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 note- takers 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 ABILITY 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 facul- ty 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.

ABILITY 31 32 ABILITY y most accounts, low back pain is the leading A person who has exhausted most available remedies cause of lost work time in the US, and perhaps in and seeks the advice of a physician can expect a some- Bmuch of the developed world. In the early days what regimented approach. The primary care physician of the Industrial Revolution, at least one physician may prescribe a slightly stronger pain medication or associated the malady with the “back-breaking” work simple exercise regimen. This is an appropriate stall of railroad construction, and described the condition as tactic, as back pain often resolves on its own or with “Railway Spine.” simple intervention.

Although back pain is somewhat better understood these If symptoms persist despite initial treatments, a primary days, it is still the most common complaint heard in a care physician may then refer the patient to a physical doctor’s office. Most of these complaints are attribut- therapist. A trial of physical therapy frequently involves able to degenerative arthritis of the spine, which all moist heating pads, massage and range-of-motion exer- adults have as a natural part of the aging process. The cises applied during a series of several visits per week. word arthritis actually means inflammation in the joints, Strength training or more rigorous therapies are and the spine is one long series of joints. reserved for periods when pain is absent or minimal.

Virtually everyone will experience back pain at some Frequently, an MRI scan is obtained to better assess the point in life. In addition to occasional excruciating back exact nature of any degenerative changes in the spine. In pain, symptoms can include numbness and weakness in the case of low back pain, the MRI will show the lower one or both legs, difficulty walking, bowel and bladder part of the spine, called the lumbar spine. Aside from problems as well as sexual dysfunction. excluding the rare, more serious diagnosis, this contributes little to the initial management of low back Fortunately, most people will only have a few minor pain. Most of the time, an MRI only shows the degener- episodes, which will respond to home remedies such ative changes in the spine that all adults have. Most of as rest and over-the-counter medications. Others, us are not aware that we have these age-related changes however, may require additional measures, including in our spines because we are not having severe enough altering work habits or replacing an old mattress with symptoms to warrant an MRI scan. a new, more supportive one. Still others who experience ongoing chronic back pain will get partial relief When physical therapy is no longer effective, the next from more advanced treatments and go on to live rela- step may be a referral to a pain management specialist, tively normal lives. who usually has expertise in anesthesia or physical medicine. This person may invoke a number of treat- Those with the most severe cases may continue to find ments from careful administration of potent narcotics to themselves in declining health and be referred by their injections of anesthetics and steroids directly into the general practitioners to see a neurosurgeon. These spe- lumbar spine. cialists are trained to operate on the brain and spine. Some orthopedic surgeons also perform spine surgery— All too often in this country, the next step is referral to a procedure which should always be a last resort. a spinal surgeon (neurosurgeon or specially-trained orthopedic surgeon). In many instances, spine surgery Traditional therapies include medication, physical thera- is relatively effective. However in others, there is little py, chiropractics, pain management and sometimes or no improvement or the relief is temporary and symp- surgery. Non-traditional treatments include acupuncture toms return in a few years. Though most operations are and acupressure. Unfortunately, no treatment is com- completed successfully and many patients recover pletely effective in every case. without a hitch, never lose sight of the fact that such back operations are considered major surgery and Use of non-traditional potions and herbs not regulated therefore involve risk. by the FDA should be approached with caution. Most are ineffective, while others, if used improperly, can For those who suffer pain in their cervical spine (neck), cause liver damage and other problems. the story is nearly the same. However, degenerative arthritis in the neck can cause symptoms in the arms as Often, there is a psychosocial component to back pain. well. Cervical spine disease is fraught with an additional Life stressors or depression, for example, may require concern in that the spinal cord itself can be involved. specific therapies. When the stress or depression is Pressure on the spinal cord causes a greater array of addressed, the pain may vanish. symptoms, some of which may not recover even if the pressure is relieved surgically. This lowers the threshold Those on a quest to ease chronic back pain should for surgical treatment in the case of cervical spine dis- beware. While many therapies are touted, success rates ease, but does not change the scrutiny with which the are disappointingly low. This can be as frustrating for decision to have surgery should be made. care providers as it is for patients. In general, doctors tend to believe that the best treatments for a disease are In the next installment of our special series on pain those that can be scientifically proven. Even the treat- management, we’ll discuss fibromyalgia. ments for back pain that have been studied the most have not produced impressive results. 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 Account- ability Office (GAO) survey people with disabilities about their perception of their access to polling places and to alternative voting methods.

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 addi- A VOTE FOR ACCESSIBILITY! tion, the GAO found that none of the places surveyed offered ballots in an alternative format or voting equip- Dear ABILITY Magazine Readers, ment adapted for voters who are blind. While the results were discouraging, their exposure did add support for Voting is the foundation of our American democratic stronger provisions for voters with disabilities in 2001’s system, yet until recently many voters with disabilities Help America Vote Act (HAVA). faced physical barriers at the local polling place. This often discouraged them from participating in elections. This act contained a number of provisions designed to When they did, it was often by absentee ballot. increase accessibility for voters with disabilities. For example, state and local governments are eligible to I believe that people with disabilities should have a receive federal funds to make paths of travel, entrances, choice about how they wish to vote. If they want to go exits and voting areas at polling places more accessible. in person, they should be able to do so. Consequently, I Additionally, each polling place is now required to have have worked to ensure that they have the option to vote voting equipment that accommodates everyone, includ- in a full, equal and integrated manner. ing the blind and those with low vision, so that they enjoy the same privacy and independence that is accord- Historically, accessibility issues facing voters with dis- ed to others. abilities on election day generally fall into two cate- gories: physical access to the polling place and “ballot Following the passage of HAVA and the 2004 election, accessibility.” There are a number of federal laws that, the GAO has reported improvements in state provisions together, are intended to afford voters with disabilities and local practices. However, we do not know the extent accommodations in both of these areas. to which these advances have resulted in improved accessibility of polling places and voting systems on Under the Voting Rights Act of 1965, voters who are election days. That’s why I have requested that GAO blind, disabled or unable to read or write are entitled to reexamine the issue during the 2008 election. assistance by a person of the voter’s choice. This person is permitted to accompany the voter into the booth. I know that many of you disability advocates continue to work with state and local officials to ensure that local The Voting Accessibility for the Elderly and Handi- polling places are accessible, and I commend you on capped Act of 1984 requires that all polling places for your efforts. Together, we can ensure that voters with federal elections (with a few exceptions) be physically disabilities can fully participate in the electoral process. accessible to voters with disabilities. Additionally, states are required to make available voting aids for those who Senator Tom Harkin, D-IA are disabled, including instructions printed in large type at each polling place and information about telecommu- Sincerely, nications devices for those who are deaf.

Title II of the Americans with Disabilities Act (ADA) requires that people with disabilities have access to pub- Senator Tom Harkin lic services, programs or activities, including the right to www.harkin.senate.gov

34 ABILITY ABILITY 35 n their new book, Big Brain: The Origins and Future Namely, how can we understand brain cell connections of Human Intelligence, authors Gary Lynch, PhD, as circuits? How can we understand the complex sys- Iand Richard Granger, PhD, ask, “Does size matter?” tems of the brain so thoroughly that we can actually Here are some clues: build “simulacra” or computer models of them? The institute is in the building stages now at Dartmouth, and 1: Based on physical size alone, men’s brains are bigger it’s an exciting and challenging prospect. than women’s. (But if women are right, men think with another part of their anatomy anyway.) Cooper: When you think about building a computer model of the brain, given the complexities of what goes 2: There were pre-human primates, now extinct, whose on with memory and the organ’s other functions, can brains were relatively larger than ours. you say how you’re going to pull that off?

3: Chimpanzees perform better on certain memory tasks Granger: Sure. There are a few key ideas. One is to than college students. consider the connections between brain cells and treat them like electrical circuits. We can actually build brain- To knock some sense into their own skulls, Chet like circuits and study them. Cooper, editor-in-chief, and E. Thomas Chappell, MD, managing medical editor of ABILITY Magazine and Another notion to consider is that much of what we neurosurgeon, recently spoke with Granger, who is a become as humans is learned. Some things are hard- professor at Dartmouth College in Massachusetts, wired, so to speak, based on evolution and genetics or about the book he co-authored with Lynch, a professor DNA. Other things are acquired from our various life at the University of California, Irvine. The two scien- experiences. That combination is the one-two punch sci- tific researchers undertook a groundbreaking study of entists are striving to understand. the human brain’s evolution. Both prominent neurosci- entists, they trace human intelligence back at least tens We are trying to build circuits with an architecture simi- of thousands of years to before the Boskops, pre- lar to that of the brain. Computers have what is called an humans with brains 30 percent larger than ours. Granger architecture, which is a set of circuit designs that can do and Lynch endeavor to understand Alzheimer’s via a such tasks as calculations. Though computers are now computer model, to comment on the limits of the human quite sophisticated, they can’t “think,” “recognize,” or brain, and to examine such stellar thinkers as Albert execute many of the tasks that humans can do with their Einstein. brains. How well we understand the brain is another matter entirely, but our knowledge base continues to Chet Cooper: Gary is in California and you’re in Mass- evolve. achusetts… how did the two of you get together to write this book? We can already “teach” the circuits we’ve built. We literally hold up a cup in front of a robot and say, Richard Granger: We both used to be at UCI. I came to “Here’s the cup.” Then we move it and say, “Now the Dartmouth to take an interdisciplinary position. Dart- cup is over here,” and then we ask it, “where did the mouth College founded the Neukom Institute, which is cup go?” We teach it the relationships between objects aimed precisely at the questions that interest me most. in the real world, what it perceives, what it “hears.”

36 ABILITY The computer can respond to simple language, such as that they perceive realistic experiences, it may be a you might use with a child, to format its own internal superior way to learn. software models for what it’s seeing and hearing. If, however, you are talking about a person unwilling to This sounds a bit like magic, but existing computer tech- learn new ideas, that’s a different story entirely. One cer- nology allows machines to change their output based on tainly doesn’t want to turn to thoughts of “brainwashing.” certain input. This is analogous, in a rudimentary way, to a child never touching a hot stove again. Chappell: I’m curious about the scientific approach you use. Are you studying the “circuitry” of the brain and Tom Chappell: How does this relate to Artificial then trying to emulate it with electrical circuits, or are Intelligence (AI)? you learning more about electrical circuits and then trying to see if they apply to the brain, or both? Granger: Attempts at AI have had a goal related to ours for a long time. Much of the early study in this area was Granger: It’s the former, much more than the latter. not focused on the brain. It was focused on studying We’re trying to take the computational and engineering human behavior, and trying to see if we could imitate knowledge that we have and apply it to brain function, that behavior with a computer. In all fairness, this is a bit to help us see if we can understand what kind of like trying to understand a car “machine” a brain really is. without looking under the The average human hood. More recent endeavors However, working in the other pay attention to what the brain size is about 1350 direction is quite interesting, as actual mechanisms or the well. If we can understand brain “engines” of the brain are cubic centimeters, Einstein’s circuits, we can build artificial cir- and how they actually work. brain was less than 1250 cuits that might be able to “plug” Our idea is to better under- into brains. Circuits that might be stand the intricacies of brain able to act as prosthetics and improve function to give us a realistic shot at building robotic or repair brain function. brains. Chappell: The “quantum leap” is the connection Cooper: I guess one of my concerns is the concept of between the brain and the mind. Eric Kandel’s work on ignorance and how we might replace a person’s igno- this problem won the Nobel Prize. As you know, he was rance with a certain idea. That’s the good thing about able to show chemical changes in the rudimentary ner- ignorance—it’s curable. If you introduce the person to vous system of a simple invertebrate that occurred with information in a specific way, you may get them to changes in the organism’s behavior as it “learned”—or understand it. Often it seems the only way for a person better stated, adapted to changes in its environment. Are to understand something is by experiencing it. I’m talk- there circuits that are capable of making changes based ing about temperament theory, specifically a tempera- on input? ment that is rigid. The only way a person with a rigid temperament is going to change their thinking is by hav- Granger: Absolutely. Understanding the mechanisms for ing an experience that is different from what they per- learning is a crucial piece of our work. Building on ceive to be the truth. work by Kandel and many others, we’ve increased our understanding of the biophysical (electrical and chemi- So, I’m wondering how that’s ever going to be possible. cal) changes that occur at the synapses. Synapses are the If you look at extremists, for instance, they truly believe connections between neurons (nerve cells) in the brain. what they believe. There seems to be no way to change their views, no matter how inaccurate they are. So the Understanding how biophysical changes occur in the question is, if you could understand the brain mecha- brain during learning has led to an increasingly sophisti- nisms that support this kind of thinking, could you cated understanding of how we learn. This has already change it for the better? And, if you could, would it be led to the development of novel drugs, many of which ethical to do so? are currently in human testing; and novel hypotheses and treatments for learning-related conditions. Such Granger: That’s a tough issue, and one that’s on all of knowledge also underlies our ability to build artificial our minds these days. Picture a teenager who just does- brain circuits. These artificial brain circuits, called sim- n’t realize that a car really is dangerous until he gets in ulacra, can also “learn” on a synapse-by-synapse basis. his first accident. At that point, his whole conception of what he’s doing while he’s driving changes. The ability Chappell: So you start out with simplistic circuits and to simulate experiences is already happening in what we rudimentary functions, emulating a lower organism’s now call virtual reality. Many kids these days are nervous system and then you build on that? exposed to this in video games with uncertain results, to be sure. If we can train people by simulating reality so Granger: Yes. A lot of that is going on in our field.

ABILITY 37 Obviously, it’s easier to build simpler mechanisms, but are based primarily on the olfactory system (parts of the it’s also potentially frustrating, because no one wants to brain linked with sense of smell). It appears that as the build a simple mechanism and then discover that it is not brain evolved, our other senses developed “on top” of on the pathway to bigger and better mechanisms. One of the olfactory system, so to speak. As we go up that scale the reasons we’re studying the evolutionary progression from mice to dogs to primates to humans, we get of small brains to big brains is precisely because we increasing size and subtle, but important differences in want to know where the highway went that led to the ways various areas of the brain develop. humans as opposed to some other version of our species. Cooper: Eventually, if things continue to progress, we Chapell: When you say “small brain” and “big brain,” should be able to build models of certain chemical you’re talking about evolution—how nervous systems activities or to track the failure of those activities that have evolved from simple “lower organism” nervous occur in the human brain, right? systems to the mammalian brain? Granger: That’s right. For instance, we might model the Granger: That’s right. Actually, all mammals’ brains are binding of dopamine (a brain chemical or neurotrans- extraordinarily similar. The brain of a mouse and the mitter) with its specific receptor, or the failure of this brain of a human are, except for their size, far more sim- interaction that occurs in Parkinson’s disease. Another ilar than they are different. The neurons, the chemistries example might be a model of glutamate (another neuro- and the brain areas are basically the transmitter) transmission and the same. The organization and the com- problems that occur in Alzheimer’s munication between those brain Disease, and so on. areas are basically the same. The differences between the brains of Cooper: What is the link between lower mammals and humans are the “brain” and the “mind.” enhancements of the same basic brain structure. So we do study sim- Granger: One of the big questions pler brains to better understand in this field is Do minds arise sim- “big” brains. We are getting vital ply because there is a brain? Is the hints from the simple brains and mind simply what the brain does? studying how those “scale up.” This If not, what other information about way we can understand what aspects this do we need to put in our com- of small brains actually compare to puter models of the brain? those of larger brains. So one can imagine getting to a Chappell: Since mammalian brains point where we build a complete are all similar, you are probably brain that has its synapses and its more interested in key developments chemical transmissions simulated; in brains that occurred along the its brain compartments and com- sub-mammalian levels of the evolu- munication between them, yet tionary chain? doesn’t give rise to perception, memory or consciousness. Granger: Right. The goal isn’t just to understand mice or cockroaches; we really want to But it is still feasible that, as we build these things up to understand humans. Early vertebrate brains, like those the scale that we hope to build them, more properties of of fish, actually have some of the constituents that are “the mind” will emerge. still present in mammalian brains, even in humans. So yes, we are using each of these clues along the evolu- The suggestion was made that if we can build machines tionary “highway” to understand the human brain. that are intelligent in ways we are not, perhaps the combination of our human intelligence and these Chappell: You mentioned the cockroach and the human. machines might overcome our shortcomings. We often That’s a big jump in brain complexity. What are some see that in science, where the instrumentation is vital to good examples of organisms with nervous systems of making the leap in knowledge. We couldn’t under- intermediate complexity that have given you useful stand the universe without telescopes and infrared information? astronomy. We couldn’t understand chemistry without electron microscopes, and so on. This may be another Granger: There are two parts to the answer. One is to round of “tool-building” that we have to go through to say, begin with the earliest vertebrates—fish. Then understand the mind. move in short steps along the evolutionary chain to study the brains of the earliest mammals, which are rela- Cooper: What would you like people to walk away with tively simplistic. The brains of fish and lower mammals after reading your book?

38 ABILITY Granger: We think of humans as the pinnacle of evolu- There’s an enormous amount of evidence that just with- tion. There were human-like creatures, some close in a species, such as humans, bigger brains don’t mat- “cousins” of ours, that lived 10,000 to 20,000 years ago. ter. The average human brain size is about 1350 cubic They had brains substantially larger than our own rela- centimeters; Einstein’s brain was less than 1250. tive to their body size. These species may have even been smarter than us. They may have been more capable The range of brain sizes within a single species is sub- than us. Yet, somehow they didn’t survive evolutionary stantial. You often hear from people who claim that dif- pressures, so to speak. If they were around now, maybe ferent races or ethnicities have bigger brains and more our society would be more advanced. intelligence, but that is simply not the case. When mea- surements are taken, we find that size within a species Cooper: You’re talking about the Boskops? really doesn’t matter.

Granger: Yes. The Boskops and many others. The On the other hand, between species, it’s the organization Boskop is just sort of our “poster child,” but there are a of the brain that matters. When you compare species, number of well-studied skulls from 10,000 to 30,000 considering two animals with similar size bodies but years ago that are much larger than ours. Endocasts or different size brains, you do see behavioral differ- molds of the would-be brain size were made from these, ences—things that it’s pretty hard to think of as any- and they’re big, shockingly big! thing but differences in intelligence.

It raises the question, how is it that we ended up this Take an ape and a human of roughly the same size, for way? How did we get the intelligence that we have? Or example. The human has a brain that is easily three were we somehow selected to survive for our slightly times larger. It’s hard not to say that there is something lesser intelligence? Is there some crucial ability that we in that. The same thing happens in many other species have that they didn’t have? in “head-to-head” comparisons—(laughs) pun not intended! Chappell: Does size really matter, or is it more of an effi- ciency issue? When we are infants, brain growth is what This doesn’t mean, necessarily, that added intelligence has determines the skull size. So, what if the Boskops were added survival value. That remains to be seen. Humans just genetically programmed to be larger animals and haven’t been around that long in evolutionary terms. their brains were just larger because they were larger? 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 medi- Granger: Yes it was. I found it quite stimulating. um 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 When it comes to primary use of a particular foot, say Iyour body is controlled by the right hemisphere of for kicking a ball, the picture is not quite as clear. This your brain and vice-versa. About 90 percent of the pop- has often perplexed people who are trying to learn to ulation is right-handed, performing most important ride a surfboard, skateboard or snowboard, and who are functions, such as writing, with the right hand. not certain about what would be considered “putting their best foot forward.” In almost all of these people most of their language function (reading, understanding, speaking and writing) Most people figure out naturally which foot arrange- is controlled by their left hemisphere. This is referred to ment is more comfortable. Given the preponderance of as “left-hemisphere dominance.” left hemisphere dominance in the population, most people tend to put their left foot forward. Of the 10 percent or so of people who write left handed, about a third also have most language function in the In most board sports the rear foot is the control or left hemisphere. Another third or so have most language “power” foot. But many of us, including many of us function in the right hemisphere, and others have con- who are almost completely right-handed—or left hemi- siderable amounts of language function in both hemisphere dominant—still put our right foot forward on a spheres. Those who use both hands equally well sport board, which officially makes us goofy-footed. (ambidextrous) have no dominant hemisphere.

ABILITY 39 40 ABILITY rowing up in Santa Monica, CA, celebrity chef Sandra Lee remembers her grandma baking a Gspecial cream cheese and peach cake for an aunt's birthday. Grandma Lorraine made the dessert with love, peaches and a dash of pain.

“She rubbed her hands a lot,” the host of the Food Net- Semi-Homemade Cooking With Sandra work TV show Lee recalls. “I knew she was fatigued, in pain, and that her hands were swollen. But at three and four years old, I didn't understand why.”

Lee's grandma had rheumatoid arthritis (RA), a chronic, progressive disease of the immune system that causes

ABILITY 41 42 ABILITY 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 Despite her RA, saucy Grandma Lorraine taught Lee she worked in the cafeteria at the local Rand Corpora- how to fire it up in the kitchen tion, where she prepared meals for the multitudes.

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 charita- ble 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 use bamboo steamers to cut down on caloric fats. early on. She and younger sister, Cindy, went to live Steamers with stacked layers, she says, allow you to with their grandmother when her mother, a teen parent, prepare two different items, a fish and a vegetable, for found herself overwhelmed by the responsibilities of instance, all at once. rearing small children. Times were hard. Lee’s grandmother applied for welfare and food stamps, which The celebrity chef adds that buying pre-chopped or pre- created a financial bridge until the two children were sliced veggies, which might cost a bit more, is another older and reunited with their mother, then living in way to make meals more painless. She suggests that Washington state. picking something up at a salad bar, letting the bakery slice a fresh, multigrain loaf of bread, or having a fish- “My grandmother taught me to save money and to be a monger crack shellfish are additional ways to be gentle coupon clipper, which introduces you to new, innovative to one’s hands. products, ingredient combinations, great flavor and taste. She took a less expensive roast over a more “I try to keep prep time within a 20-minute range, expensive cut and told the butcher to cube it,” which because when we’re hungry, we’re hungry now,” she helped it cook down and become tender more quickly. says.

Her grandmother’s way of managing RA was to keep her More tips from Lee to organize your kitchen: kitchen tools at hand, right there on the counter, which Lee does to this day. Having a family member with Use open shelving so that prep tools and plates are arthritis also made Lee aware that those with the condi- easier to access. tion must deal with dietary concerns, creating meals that are low in salt and sugar, while foregoing alcohol. Put items high enough so that you don’t have to bend.

On her website for cooks with RA, the author urges Pour pasta into a metal colander and carefully set that them to “take someone with you to the grocery store, inside a pot of boiling water. When your macaroni is and to use paper plates, so you don’t have to do dish- done, use oven mitts to lift it up and drain it right there es.” Lee herself says that she eats off of paper plates a at the stove, so you don’t have to lug a heavy pot of couple of days a week. water back over to the sink.

She urges cooks with RA—and really everyone—to Lee, working in partnership with Bristol-Myers Squibb

ABILITY 43 44 ABILITY and the Arthritis Foundation, has bonded with an RA There were things she could buy on welfare and things support group of women over the last year and a half, she couldn’t, so she organized her cart with eligible helping them to get cooking, stay encouraged and brain- items in one part and ineligible items in another. storm ways to help themselves and others. They’ve also given her valuable ideas for her new website, such as “It wasn’t fun, but it was a very good learning experi- using pots and bowls with two handles, so that the ence,” teaching her how to glean good values for the weight is distributed between both hands and therefore money. feels lighter. Lee applied that same approach to decorating her family One of the chef’s books that is due to be published in home back in the day, which led, in her 20s, to her first, 2008, Short Cut Meal Solutions, offers the opportunity multi-million dollar enterprise: a home-decorating kit to save additional steps by preparing one meal that can called Kurtain Kraft, which she sold on QVC. be stretched out for two or three more. As Lee puts it, “Cook once, eat thrice.” Though money was unbelievably tight during her for- mative years, the famous foodie now finds she has plen- That concept is another page right out of her grandma’s ty in her cornucopia to share with others. It was Lee and playbook, Lee says, crediting her elder as the originator her team who first contacted the Arthritis Foundation to of the semi-homemade approach to cooking. Grandma create an online site for people with RA. In Los Angeles Lorraine helped her refine the notion of “making meals and New York, she lends her name and her time to Pro- special and thoughtful, while saving money, because ject Angel Food and God’s Love We Deliver, respec- everyone is overextended with too much to do, and not tively. enough money to do it,” she says. Lee’s Grandma Lorraine continues to be her source of Ironically, it was dealing with food stamps as a child inspiration and motivation. . “I want to reach out to peo- that made Lee a more astute adult. At the time, she ple who have felt unsupported, unheard and scared,” she found the experience “scary and embarrassing… You says. “ I want them to have a place to turn. “I want to had to go to the grocery story and figure out how to change lives.” make the dollars stretch throughout the whole month.” Pamela K. Johnson

• a joint project • her RA, which made the things she loved to do, like cooking and baking, difficult. It was really insightful to ood rockstar Sandra Lee may be the front person learn from Pat some of the science behind the disease for the I Can With RA campaign, but Patricia Daul, and how it impacts patients in their daily lives.” FRN, provides strong back up behind the scenes. RA affects more than two million people, 75 percent of “Working with Sandra is a great honor,” says Daul. whom are women between their 40s and 60s, when they “Her Simply Homemade concept of 70 percent store may still be caring for children, but also starting to deal bought and 30 percent fresh is a perfect marriage of with aging parents. Says Daul, who works at New ideas. If you have RA and can’t stand and chop veggies York’s Buffalo Infusion Center, “It’s a terrible time to be for an hour, you can still have great stews and soups.” sidelined by a potentially crippling disease.”

RA—Rheumatoid Arthritis—is a chronic, progressive Early signs of RA are aches and/or stiffness in the joints disease of the immune system, resulting in stiffness, that last a few minutes to several hours. Perhaps you inflammation, pain and damage, mostly to the joints of can’t get your rings off because your fingers are the hands and feet. It is one of 80 autoimmune diseases. swollen, or you feel fatigued as if you have the flu.

Autoimmunity is the failure of an organism to recog- “If a patient says, ‘It feels like I’m walking on rocks,’ a nize its own self-down to the sub-molecular little light bulb goes off in my head,” adds Daul, who levels,which results in an immune response against its will then take a thorough medical history from a patient. own cells and tissues. “A family’s history is important to know,” she says. “Mom and dad, brothers and sisters, aunts and uncles, Together, Lee and Daul, who has worked as a nurse for grandmother and grandfather—family health is linked; 25 years, 17 of them in the area of autoimmune dis- we may have a family predisposition for RA. eases, do community outreach, educating people on RA, as well as helping cooks turn out tasty dishes with a “My father had a positive RA blood factor. He didn’t minimum of discomfort. have RA, but his sister did. If I ever begin to feel the symptoms, I will tell the intake doctor about my family “I saw first hand the difficulties my grandma faced with 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 to be a trigger, which turns on this faucet of sorts, lot of details to make a diagnosis.” bringing inflammation to the joints, causing swelling and erosion of the tissues. I’ve seen patients whose As is the case with autoimmune diseases in general, hands are deformed. These drugs can keep the disease the effects can be mild, moderate or severe. They tend from getting worse. I don’t want to see people’s hands to have flare-ups—periods when they get worse-as like that anymore.” well as remissions—when they all but disappear. Usu- ally, however, they don’t go away, and the flare-ups Though Daul’s patients ask her all the time what causes increase. Fortunately both the disease and the symp- RA, she says she doesn’t have the answer. But because toms are typically treatable. most patients with it are female, she says hormones may play a role. Other factors could be bacterial, viral or Daul recommends that a person with symptoms of RA environmental in nature. seek out medical attention early, because treatment may not only help with symptoms, but can potentially arrest “There are so many theories,” she says, but no answers. the disease’s progression. 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 Within the past 10 years, says the nurse, biologic med- is what I’ve done; this is what helps me.’ “ ications have emerged which treat adults with moderate to severe RA. These medications not only improve phys- Working with Lee, Daul has shared her knowledge and ical function, but control the advance of joint damage. insights with I Can With RA support groups and online. “That’s huge in a rheumatology setting,” she says. “Until The website not only offers recipes, useful tips for there’s a cure, we want to keep people functioning.” working in the kitchen and tools that lighten the load of a cook with RA, but also links to other sources of relat- It’s best to work with a rheumatologist who chooses an ed information, such as the Arthritis Foundation. aggressive course of treatment, using the latest category of Disease Modifying Anti-Rheumatic Drugs (DIMARDS). “With the support groups, a person can say, ‘Yes I know These treat not only symptoms, but go after the disease someone else who has RA, and I don’t feel so alone.’ “ molecules, or target specific cells responsible for the inflammatory cascade that often occurs. PK J

“We don’t know what gets RA going, but there appears www.icanwithra.com

46 ABILITY ABILITY 47 Stunt Double

48 ABILITY ’ve been in a wheelchair for more than a decade, but yet reasonably priced Glen Ivy Hot Springs in Corona, only in the last year or so have I had a strange and CA, in the desert east of Los Angeles. Then I was to Ipowerful new urge: The urge to move. I’m not just report back on how they treat a person in a wheelchair. talking about my legs (those fantasies I save for my That was the undercover part. dreams), but to take planes, trains and automobiles and see the world. I want a well-stamped passport. Since I’d become paralyzed, I’d never thought of visit- ing a healthy retreat like this. I don’t know why. It prob- The great American hero, Dean Moriarty, in Jack Ker- ably has something to do with the residual embarrass- ouac’s Beat classic, On The Road, put it best: ment of appearing unclothed or semi-clothed in public in a chair. You’re vulnerable enough as it is. Being “We gotta go and never stop til we get there.” naked and impaired sounds like a one-two punch to your dignity. Like a lot of paralytics, I had to be pushed “Where are we going?” asks his pal, Sal Paradise. into doing this, or lured by a British editor.

“I don’t know,” Moriarty says, “but we gotta go.” I also had to convince myself: This wasn’t just an awk- ward, potentially embarrassing trip to a spa to get mas- Exactly! saged, muddied up and moisturized, this was a job, an investigative assignment and I owed it to spa-lovers I think this case of middle-aged wanderlust has some- with disabilities everywhere to thoroughly check the thing, if not everything, to do with my paralysis. Sitting place out. still day in and day out is not all it’s cracked up to be. You need a countervailing force to feel energized, and Besides, being a day off from real life, I realized I was logically, that force is movement. Tooling around the also trying my hand at a burgeoning genre of journal- mall only gives you the illusion of going somewhere. ism: accessibility reportage. This has been around in Sure, it’s fun to zip along on the slick flooring, scaring disabled-specific media for a while, but now it’s starting old ladies, but you always end up back at the same park- to expand. Like big-city restaurant reviewers, travel crit- ing space. ics such as Peter Greenberg and those people who write those frothy, “What a soft mattress!” fluff pieces for When you’re in a plane heading from Los Angeles to Travel and Leisure, there is now a whole new area of Qatar, as I did recently with ABILITY editor-in-chief general-interest, mass media coverage of places you can Chet Cooper, you aren’t experiencing the illusion of take a friend or relative who is disabled. So I was just movement—you’re zooming, man. dipping my toe in the pool, so to speak.

It’s not unlike the feeling you get when you ski down a About the time I visited Glen Ivy, for instance, the New mountain in an adaptive ski rig. If you could just com- York Times ran a long piece by restaurant critic Frank bine these two sensory highs: flying long distances and Bruni entitled, “When Accessibility Isn’t Hospitality.” It skiing full speed, you’d be rocketing towards nirvana. was an in-depth study of the many problems people One possibility is traveling to the all-indoor, all-fake- with disabilities encounter while dining out in New snow ski slope they’ve created in the Emirate of Dubai, York: from getting in the door to getting to the loo. In right next door to Qatar. Sixteen hours on a plane plus a one Italian hot spot, a woman with a disability said that 12-hour time change for five minutes of pure downhill to get to the bathroom, it would “literally have required terror sounds like a dream vacation to me. all diners to stand up and remove the outer chairs of all the tables.” Her solution was to “dehydrate” before din- Of course my urge to leave town might be some Freudi- ner and avoid the john altogether. an impulse to run away from paying bills and watching Jeopardy every night, but that’s about as far as my psy- The article ended with a list of establishments labeled, choanalytical skills go. I just want to keep it moving. So “Top Tables for Diners With Their Own Chairs.” You when I got a call out of the blue from a very up-market can be sure that I, along with a lot of other chair users, British magazine called Spa Business about an “under- will carry that list on our next trip to NYC. Some 50- cover” reporting assignment, I hoped they’d say: million strong, PWDs are not just a cause, we are a huge market, something both Bruni and at least those seven “If you don’t mind going to Bangkok in October, with a swanky joints in Manhattan know very well. two-day lay-over in Fiji…” Part of me, I confess, secretly hoped that Glen Ivy Hot Unfortunately, Thailand wasn’t on the itinerary: I only Springs was woefully inaccessible and that the staff had to travel 50 miles, not 8,000. Even before they would ignore me, patronize me or otherwise treat me explained the assignment, I blurted “yes.” This may shabbily. That way, I could write a snippity, self-right- make me sound easy, but they had me at the word “spa.” eous rant against the universal view of people in wheelchairs, and those who are disabled in general, as second- The assignment was a gem: Spend a day at the sumptuous, class citizens.

ABILITY 49 But that didn’t happen. From the moment I arrived at pound fiberglass ramp around with her to get up and the spa and noticed the dozen well-marked handicapped down small flights of stairs in local eateries. If I had parking spaces awaiting me, to the moment I rolled back stuffed a simple metal folding chair in my trunk, I could to my car feeling like a limp washrag, I was more than have gotten into those medicinal waters. The lesson accommodated. I was treated with dignity, respect and being buy a bigger car or truck for all of this life- wall-to-wall helpfulness, just like any other stressed-out, enhancing paraphernalia you should have on hand. spa-craving supplicant on a family budget. The swimming and therapeutic pools had no ready Glen Ivy Hot Springs has been a commercial venture access, either. If Glen Ivy was really on top of things, since the late 1800’s, but only recently grew from a they would have installed a self-operating hydraulic lift modest mineral bath into an 11-acre complex surround- to ease me into the water. Short of that, a simple ramp ed by golf courses and born-yesterday residential com- would have allowed me to roll in and out of the water in munities. It is equipped with multiple pools and baths, a that utility chair. Of course, like the lady above, I could corps of masseuses and masseurs, a “Club Mud,” where have supplied that ramp myself, another handy item for you can be covered in restorative red clay, a restaurant, the back of the super-sized pick-up. a grotto and a staff of the cleanest-cut young people this side of Disneyland. These various stumbling blocks were upsetting but not that upsetting. I guess by the time I realized what I Jason was one of the staff members who made my own couldn’t do with ease, I had been subjected to so much stay so memorable. He stepped up to show me around de-stressing that I didn’t really care. On the other hand, and point out the fully accessible lockers, showers, sinks if I had gone out there principally to take a soothing and toilets. Except for a few steep inclines, the grounds soak in the hot springs or a dip in a salt-water pool, I were wheelchair-friendly. My first stop was a 50-minute would have asked for my money back. olive sage “renew” massage. The table was instantly lowered to meet the level of my chair. The masseuse had no So, I guess on the Accessibility Meter of 1 to 10, 10 trouble figuring out my problem zone: the shoulders, of being best, Glen Ivy garners a 7 plus, or maybe an 8. course, which are the focal point of aches and pains for Jason, on the other hand, gets a full 10 and hopefully a someone who pushes a manual chair around all day. She nice bump up in his next paycheck. did a great job and didn’t once mutter, “You poor thing.” Spa Business seemed pleased with the finished article Then Jason introduced me to a cheap item every spa and I can only hope that it’s the beginning of a beautiful should have: an old, fold-up, standard-issue wheelchair friendship. Certainly there are spas all over the Mediter- that you can probably pick up at a flea market for $25 ranean that need to be critiqued with the cool eye of a and toss away when it rusts or breaks down. The globe-trotting paralytic. If not Corsica, how about a moment I transferred into that relic, I could make a lot of weekend trip to the new Paris Hotel in Las Vegas? Rumor has it they have both a state-of-the-art hydraulic stops at Glen Ivy with no hassle. I could roll into the pool lift, and a coterie of young lovelies in French maid steam room or shower without having to transfer to a outfits bringing you fresh towels. Okay, I made up that hard surface. I could enter Club Mud, sit in a convenient last part, but I won’t really know until someone sends area, coat myself (and the chair) with mud, dry in the sun me on a mission to find for myself. and then roll into an outdoor shower stall and wash off. If I play my cards right, maybe some day I could Finally, I could enter the underground grotto, have become the Gene Shalit/Peter Greenberg of the field and myself painted from head to toe in a pea-green concoc- proudly wear the moniker, Accessibility Critic At Large: tion of sea kelp, aloe vera and other elixirs, sit in a Have chair, will travel. hydrating chamber as it did its magic and then shower off again. That old chair became my constant compan- by Allen Rucker ion throughout the day. Allen Rucker is a regular contributor to ABILITY and the author of The Okay, Glen Ivy wasn’t completely accessible. None of Best Seat In The House: How I Woke Up One Tuesday And Was the doors, for instance, opened automatically, making Paralyzed for Life, among other books. www.allenrucker.com them a struggle to get through. And, ironically, the one For more info go to: feature of the place where no one could figure out how www.glenivy.com 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 12-

50 ABILITY ABILITY 51 52 ABILITY n the background, a flute played in a sweet song about rainbows, as Rohan Mur- phy tapped the raw power of his arms and shoulders to raise and lower his body Ion a table’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?

ABILITY 53 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,” Mur- phy said about his demonstration via web- cam. “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 push- ups 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 Nit- tany—a local mountain near campus that rises 2,077 feet above sea level. The coaches said Murphy could opt out. Then

54 ABILITY

they said he could just do half, and that would be fine. as they age and progress in the sport. Then they ran out of words as they watched him complete the entire run—on his hands. Another plus: Murphy’s got a superior support system in place. Mary Hodge, who coaches the U.S. Paralmpic One day, Murphy tried powerlifting. In his first compe- team, has provided him with training techniques. He’s tition, he set a national record. In the second competi- also received coaching from former Olympic athletes. tion, the 2006 IPC (International Paralympic Commit- tee) Powerlifting World Championships in Korea, he While his Nittany Lion wrestling days may be over, earned the bronze medal in the Junior Division (22 and Murphy continues to train on Penn State’s campus with under) by lifting 281 pounds. Recently, he lifted 325 former teammates, thanks to Coach Sunderland. Mur- pounds. He wasn’t seeking to qualify for the 2008 Para- phy earned a bachelor’s degree in kinesiology from the lympic Games in Beijing, China—he’d already done school, and is currently pursuing a master’s in health that—but simply to challenge himself. policy and administration there.

“Still, achieving more than what he was capable of a “Rohan has made the commitment to being a great ath- few months ago, is a credit to him,” said Teri Jordan, the lete,” said Jordan. “He wants it, he’s going to do his best ability athletics coach at Penn State. “When he goes (to to get it, but he’s not going to be upset as long as he’s Beijing) he wants to do the best he possibly can.” doing his best. And I think that’s what each of us should strive for.” Murphy is headed to the September Paralympic Games in Beijing with the U.S. powerlifting team. He qualified The jingle on Murphy’s commercial is addictive; you for the games—another first for Murphy—by being hear it once and it sticks. But when the ad stops, it’s not among the top 10 ranked powerlifters in the world in the music that the viewer remembers most, it’s Murphy. his weight class. After completing his amazing handstand push-ups, he shakes the tension from his arms, springs up into his “To be honest, three years ago I had no clue what the wheelchair and wheels down the hall. It’s a workman- Paralympics were,” said Murphy. “When I was younger like demeanor, and that’s addictive, too. I tried disabled sports in Long Island, NY, where I grew up, and it just wasn’t really fun. It wasn’t competitive.” “He’s such a great inspiration to athletes around him as Murphy didn’t like the non-competitive aspect of the well as everyday individuals like myself,” said Jordan. games where there were no hard feelings and everyone “What heart! What desire!” was a “winner.” “Sports isn’t about everyone winning,” he declared. “Sports is about a winner and a loser. by Josh Pate That’s what makes sports so great, the competitiveness.” Josh Pate is a regular contributor to ABILITY Magazine and also works Murphy took up wrestling for the competition. The for Turner Sports. He’s covered NASCAR and collegiate athletics, and workouts buffed him up from a 90-pound teenager to a has written features on sport and disability, the Paralympic Games and veteran rehabilitation. He lives in Atlanta with his wife and son. 125-pound chiseled man heading into this summer’s training. And it’s the workouts that have bridged the gap U.S. Paralympics (with commercial) between his wrestling career and powerlifting, which he www.usparalympics.com sees as his future. Paralympics Bio The athlete had no prior experience in powerlifting olympic-usa.org/paralympics/39341_53224.htm before his initial competition. He had only lifted YouTube (commercial) weights. “The main thing I can take from wrestling is youtube.com/watch?v=qaXfFRx5ZWw 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 ABILITY ABILITY 57 ’ve performed at clubs, colleges and conferences all In 1994, Dana and Jose Aguillon, one of his Golden around the country, but I’d never felt as moved as Knight teammates, were practicing a maneuver known Iwhen I spoke to soldiers at Walter Reed Army Med- as the “diamond track,” which calls for jumpers to fly ical Center in Washington, D.C. Veterans injured in Iraq away from each other for about a mile and then turn and Afghanistan go there to be rehabilitated. In a small 180 degrees and swoop back in, crisscrossing in the way, performing for the brave men and women of the sky. Dana and Jose had demonstrated the move many, military made me feel as if I were serving my country. many times without a problem, but that day, rather than crisscross, they slammed into one another at a speed of There was nothing heroic about what happened to me: I 300 miles per hour. Jose died instantly, while Dana’s was in a car accident in high school, broke my neck and legs were severed from his body, one above the knee became disabled. It was a case of wrong place, wrong and one below. time. But to voluntarily put oneself in harm’s way, knowing the potential danger, is another matter entirely. After his wounds healed, Dana became the U.S. Para- My gift to these vets would be to offer a brief escape chute Team’s lead speaker and recruiting commander. from the trauma they’d suffered: For 15 minutes, they His motivational messages have touched everyone could sit back and laugh. (Those too ill to join us at the who’s heard them, and demonstrate that people with show caught it on video monitors in their rooms.) physical challenges can continue to work and excel.

Dana Bowman served as emcee. He brought me and As Dana finished up, he turned the room over to John, motivational speaker John Siciliano along. Dana is a whom he’d met five years ago during one of his gigs. double amputee who was named a Special Forces Sol- John, too, is very energetic and pulls his audience into dier and a member of the Golden Knights, the elite para- his world using his acting talent, along with a com- chute team of the U.S. Army. His previous presentations pelling Power Point presentation. at Walter Reed have all been well received. Beyond fre- quent appearances there, he’s given more than 400 In high school, John and his friends left a restaurant one speeches over the last few years and has been featured night and were blindsided by a car. Although no one in Sports Illustrated, Reader’s Digest and People maga- died, John awoke in the hospital with a neck brace and zines, and on such TV shows as Dateline, A Current tube in his throat so that he could breathe. As he lay Affair and Real TV. there, an eerie feeling overwhelmed him: Something wasn’t right. Soon after, he learned that doctors had

58 ABILITY had to amputate his right leg four inches above the knee. know I was one of them. “When I was 18, I was injured in a military accident: As I was stalking my ex-girl- Before his accident, John had been a track star. Looking friend, I got blindsided by a Salvation Army truck.” tragedy square in the eye, he learned to walk again, and then to run competitively, this time specializing in 100 I told them about the time my father saved me from and 200 meter sprints. He trained intensely and even drowning by taking his foot off my head. I talked about earned an invitation to the 1996 Paralympics Trials held my life, my family and dating. “I’m so naïve,” I said, in Atlanta, GA, where he broke the event’s 200-meter “that my girlfriend told me she wanted to ‘just do it.’ So record and secured a spot on that year’s USA Team. I went out and bought her a pair of Nikes.” As I closed, the laughter and applause told me I’d done good. When In the interim, he became a speaker traveling the coun- it comes to the military, the last thing you want to do is try to tell people that there is life after a disability. He bomb. That’s their job. assured the Walter Reed audience that there are many individuals around the nation and around the world who After the three of us performed, we were presented face the same challenges that he has. Now his mission is with a certificate by Sergeant Segraves, who thanked to touch as many people—disabled and able-bodied as us. I suspect the audience inspired us more than we possible—by sharing his story. inspired them. Since our injuries, we speakers have come a long way, and now the soldiers will have to After John’s incredible message, I launched into my find theirs. With guts and courage, I’m sure they will. comedy routine with a disability joke: “I’m not going to move around too much on stage because, frankly, Life’s sorrows are counterbalanced with its joys. The my wheels are killing me. I think I may have an difference between those who embrace its challenges ingrown spoke.” and those who get slammed is attitude. It’s the difference between remaining stuck and rolling forward. Laughter filled the room. by Jeff Charlebois Then I went on… “Since I’ve been in a wheelchair I’ve noticed there’s nothing within walking distance.” I Jeff Charlebois is a public speaker, professional comedian and ABILITY threw in a bit of military humor to let the audience 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. [email protected] www.abilityawareness.org ABIL- 60 ABILITY ACROSS DOWN 1. Film where a blind man falls in love with an Indian 1. Movie about the true story of a 13 year old boy who woman (2 words) had AIDS 8. Poe's story, "The ___ and the Pendulum" 2. Law and Order actor, with T 10. For every 3. Act rudely towards 11. African American sprinter who upset Hitler by win- 4. Night breathing problem ning at the 1936 Olympics 5. Place to meet Tiger? 13. "All you ___ is Love" The Beatles 6. Provoke 14. Lance's machine 7. Approval 16. Story of a deaf boy who cannot speak but writes let- 8. Movie starring Tom Hanks and Denzel Washington ters to his mother (2 words) which deals with discrimination against people who 22. TV show honored for its accurate portrayal of a have AIDS character with a disability: "___ my children" 9. Movie starring Anthony Hopkins centered around a 24. Boxer's weapon circus employee struggling to overcome disability (3 25. The people's legal name, John __ words) 26. President who served 4 terms and had polio 12. Neither's cousin 28. Medium like perception 15. Top women's surfer, ____ Hamilton who lost her 29. Electronic communication arm in a shark attack and became a champion after that 31. Tablespoon, abbr. 17. Excited state 33. Tanni Grey's married name (outstanding Paralympic 18. Opponent Games performer) 19. Eli Manning's org. 36. "Princess and the ___" 20. High flyers 37. That guy 21. Island, for short 39. Mer or Ber ending 23. ____ Lonely Boys 40. False collective belief 27. Entertainer award 42. He could not read till he was 12 and went on to 30. Tatoo letters, often invent the electric light bulb 32. Proposal 43. Raise in emotional state 34. Connects with (2 words) 44. Run ____ hip-hop group 35. The wrong side of well-built.... 47. www locations 38. Poet who wrote "Paradise Lost" when blind 49. "_____ and Bess" 41. Total loss, abbr. 51. State were Louise May Alcott wrote "Little Women" 45. Clown 52. See 56 across 46. Shrek is a cool one 54. Mini, for one 48. Actress, Lupino 55. Bo Derek's number 50. Sheep like memory? 56. ______person (goes with 52 across) 51. They are Blue in Vegas 57. Move where John Travolta plays a character with 53. Philosophical verb? amazing powers that no one can understand 55. "Love __ love you, baby" answers on page 63

ABILITY 61 n my wild, misspent youth I trod many paths and remote nature attracts free spirits of the 60’s. You will strove toward many goals. The hats I’ve put on and find novelists, poets, artists, musicians, parole violators Itaken off include attorney, college professor, photog- and those who’ve slipped quietly into the Federal Wit- rapher, disability advocate, Capitol Hill staffer and ness Protection program. The latter sleep like babies at White House aide. Yet it never occurred to me that I night, confident they’ll never be found. might one day rise to the lofty heights of judge in a West Texas Black-Eyed Pea Cookoff. In my first foray into Pea-Off judging, 14 Styrofoam cups were passed among the seven of us. We were given This local tradition began generations ago with a rivalry a plastic spoon and told to discard it after each taste of between two writers who claimed to rustle up the best the numbered containers. However, after spoons fell into chili. Today, there are cookoffs for almost anything that short supply, we were told to just “wipe them off with a walks, crawls, slithers, flies or is road-killed inside our paper towel.” I may be nearly blind, but I’m certain that state borders. several of the judges were using their shirttails, and at least two were simply licking the spoons clean(er). For me the fun began shortly after I moved to West Texas. That’s when the International Black-Eyed Pea The culinary grades were: (1) awful, (2) poor, (3) fair, Cookoff came a-calling, and I was invited to decide (4) good and (5) outstanding. That year, I determined people’s fates. The competition is held annually in the that three were awful, four were poor, four were fair and Terlingua ghost town area of the Big Bend. Proceeds three were good. None impressed me as outstanding. benefit Terlingua High School. (After the judging, cups of peas are sold with a piece of cornbread for $1.) This year we had 24 entries, and the assault on my taste buds was unlike anything I’d ever experienced. I was This year I was a judge at the 17th annual Pea-Off, as only able to rate three of the entries good. The other 21 it’s come to be known. Raised in a family with a proud were so bad as to be nearly inedible. tradition of eating black-eyed peas on New Year’s Day, I am eminently qualified for my post. I am certain that one of the entrants seasoned his peas with paint thinner, although another theory is that the First, a bit about the people gathered around the pots: contestant boiled the peas in tequila. One Styrofoam cup West Texas is divided into two groups: Those who live contained unidentified ingredients that could only be in Terlingua and those who don’t. The region’s primitive, reached by pressing your plastic spoon through a thick

62 ABILITY white barrier that resembled albino silly putty. The con- coction below seemed to be a combination of half- cooked 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 Terlin- gua who, until his demise, was a beer-drinking goat. Maybe Billy is what was floating in that cup of goo-

covered peas. ANSWERS

by George Covington

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