$4.99 $4.99 /N O P R 2008 Volume OV CT ATRICK OBERT

MAGAZINE VOLUME 2008 ROBERT PATRICK OCT/NOV THE VOICE OF OVER 50 MILLION AMERICANS 2 ABILITY ABILITY 3 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 Renne Gardner Sonnie Gutierrez Oakley’s headquarters:The finish line for OC Habitat’s Homes for Heros benefit Eve Hill, JD Glenn Lockhart 6 HEADLINES — Voting Gains; Help with Medicare Josh Pate Denise Riccobon, RN Maya Sabatello, PhD, JD 10 HUMOR — Run for Office? Run the Other Way! Romney Snyder Jane Wollman Rusoff

12 GREEN PAGES — Water by Computer, Solar Flashlight CONTRIBUTING WRITERS Linda Boone Hunt Gale Kamen, PhD 14 DRLC — Make Polling Places Accessible For All Valerie Karr Extremity Games Best Buddies p. 31 Laurance Johnston, PhD Andrea Kardonsky 17 BEST PRACTICES — HP & Boeing Deborah Max Myles Mellor - Crossword Puzzle Paula Pearlman, JD 24 ANITA KAISER — Finding Innovative Ways to Mother Richard Pimentel Allen Rucker Kristen McCarthy Thomas 30 KENNEDY LEGACY — One Family, Many Contributions Betsy Valnes HUMOR WRITERS 31 ANTHONY KENNEDY SHRIVER — Best Buddies George Covington, JD Jeff Charlebois Mr. and Mrs. Kaiser p. 24 Paralympic Games Beijing Gene Feldman, JD WILLIAM KENNEDY SMITH, MD — iCons 35 WEB EDITOR Joy Cortes

46 ASST. SECRETARY OF LABOR — ‘Everybody Needs to Work’ GRAPHIC ART/ ILLUSTRATION Scott Johnson 52 MEREDITH EATON — From Therapist to Actress Paul Kim Melissa Murphy - Medical Illustration

57 JR MARTINEZ — Soldiering On PHOTOGRAPHY William K. Smith, MD p. 18 Music Within Brian Gordon /Meredith Eaton CBS 60 MANAGING PAIN — Ear Aches, Tooth Aches TRANSCRIPTIONIST Sandy Adler 62 CROSSWORD PUZZLE — Guess Your Best DIRECTOR OF BUSINESS AFFAIRS John Noble, JD 64 GEORGE COVINGTON — The Secret of Politics MARKETING/PROMOTIONS Jo-Anne Birdwell 66 EVENTS & CONFERENCES Jacqueline Migell Andrew Spielberg JR Martinez p. 57 UBLIC ELATIONS 74 SUBSCRIBE TO ABILITY MAGAZINE Crossword Puzzle ABILITY’s P R

CONTENTS JSPR

NEWSSTAND CIRCULATION John Cappello WWW.ABILITYMAGAZINE.COM 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/Fuller Center or call Services TTY 949.548.5157 Habitat for Humanity 949.854-8700 ext 306 Ebsco - Library Services Fax 949.548.5966 Boeing p. 42 Swets Blackwell PUBLISHER Chet 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 not be those of ABILITY Magazine POSTMASTER: Send address changes to ABILITY Magazine, Attention Subscriptions Manager, PO Box 10878, Costa Mesa, CA 92627; Volume 2008 Robert Patrick Oct/Nov Library of Congress Washington D.C. ISSN 1062-5321 Printed in U.S.A. © Copyright 2008 ABILITY Magazine ABILITY 5 Nolan, vice president of diversity and workplace devel- ILG IS A-OKAY opment at Pepsi Bottling Group; and Deborah Soon, vice president of marketing and executive leadership initiatives at Catalyst. uman resource execs, Fortune 500 company reps and small business leaders all put their heads “The benefit [of diversity] to our companies is several H together at a recent summit to discuss strategies fold,” explains Jacqui Quesada Jones, chairperson of the to make the workplace work for everyone. The conference organizing committee, and the newly hired event, which marked the 26th Annual Industry Liaison diversity staffing manager for Northrop Grumman’s Group National Conference, featured nationally recog- Irvine, TX, plant. During conferences such as this one, nized speakers such as PBS Television host Tavis Smi- “We get real time updates from the agencies on regula- ley, Academy Award winner Marlee Matlin and popular tions, trends they’re noticing across the country, as well blogger Luke Visconti. as the opportunity to share best practices...”

Smiley spoke about race, expressing concern that, smilg.org/2008/ILG-Conference2008ExecutiveSummary.doc should there be an Obama presidency, the issue would not marginalized because he is the first Black president and a barrier had been broken. Matlin discussed her HELP FOR HIRING VETS issues with Hollywood as a deaf actress and how she overcame obstacles. And Visconti, partner and co- founder of DiversityInc magazine, who writes the popu- new online resource helps employers respond to lar blog, Ask the White Guy, talked about the diversity the needs of veterans with traumatic brain injury questions readers send him, because they’re too intimi- A (TBI) and post-traumatic stress disorder (PTSD), dated to ask the folks at work. two common conditions facing returning soldiers. The America’s Heroes at Work website (see below) pro- Key federal officials also attended the conference and vides information about TBI and PTSD, and offers guid- presented relevant policy updates. For instance, Patricia ance on how to implement workplace accommodations Schaeffer, vice president of Regulatory Affairs in the and other services to help those who have it. The web- Department of Labor’s Office of Federal Contract Com- site includes the Job Accommodation Network’s toll- pliance Programs, announced two new Federal policy free phone number, which employers can call to receive initiatives: personal assistance with providing job accommodations for veterans with disabilities. First, the Good-Faith Initiative for Veterans Employment (G-FIVE), which recognizes companies’ best practices “One of the best ways we can help these courageous for the employment and advancement of veterans. And men and women and honor their sacrifice is to help second, the Federal Contractor’s Online Application them return to full, productive lives through work,” said Selection System, which requires contractors and sub- Secretary of Labor Elaine L. Chao. “Employment can contractors either to make electronic job application sys- also play a role in their recovery.” tems accessible to candidates with disabilities, or to pro- vide them with a reasonable accommodation that allows Although their injuries may not be obvious, people with everyone an equal opportunity to compete for a job. TBI or PTSD may face difficulties, especially in the area of employment. Reasonable workplace supports Author Grace Odums, author of Diversity Principles: can often help resolve these issues. Through America’s Strategic Integration, offered research, which shows that Heroes at Work, employers learn how to offer job companies that employ diversity as a business strategy, coaching and mentoring, which can create a positive, realize higher productivity, operational efficiencies, and successful workplace experience for disabled veterans overall profitability. Her findings were in keeping with and non-veteran employees, including such “first what a panel of senior executives from industry and responders” as fire fighters, EMTs and police officers, government have found to be true as well. The group who routinely experience traumatic events. included president and COO, Wes Bush of Northrop Grumman Corporation, Joyce Rowland, senior vice americasheroesatwork.gov president of human resources at Sempra Energy; Sherry

6 ABILITY ABILITY 7 THE SCENT OF CANCER of new methods to analyze skin for signs of altered health status.

dors emanating from the skin can be used to iden- Increased understanding of the chemicals related to tify basal cell carcinoma, the most common form skin odor could also lead to development of more O of skin cancer, according to research out of the effective anti-aging skin care products. Monell Chemical Senses Center in Philadelphia. The findings, presented recently at an American Chemi- monell.org cal Society conference, may lead to even more methods to detect various forms of skin cancer. SEE AND SAY The researchers “sniffed” air above basal cell tumors and found a different profile of chemical compounds, breakthrough in video transmission technology compared to skin located at the same sites in healthy will soon allow deaf and hard-of-hearing Ameri- A cans to sign via their cell phones. Using special control subjects. software, University of Washington engineers “Our findings may someday allow doctors to screen for have found a way for mobile devices to send video. As a and diagnose skin cancers at very early stages,” said result of their discovery, the UW engineering team has Michelle Gallagher, PhD. been awarded a National Science Foundation grant for a 20-person field project to perfect the system; the project It turns out that skin produces airborne chemical mole- will begin next year in Seattle. cules known as volatile organic compounds, or VOCs, many of which have a scent. In the study presented at the The current version of what’s being called MobileASL conference, the researchers took VOC profiles from basal uses a standard video compression tool to stay within cell carcinoma sites in 11 patients and compared them to the data transmission limit. Future versions will incor- profiles from similar skin sites in 11 healthy persons. porate custom tools to obtain better quality. The break- through technology allows a cell phone user to to trans- Both profiles contained the same array of chemicals; the mit a person’s face and hands in high resolution, while difference involved the amounts. Some chemical quani- the background remains in low resolution. Now the tities increased and others decreased in samples from team is working on another feature that can identify basal cell carcinoma sites. instances when people are moving their hands; such a feature would reduce battery consumption and process- To identify changes that were the tell-tale signs of can- ing power during times when the person is not signing. cer, researchers identified a normative profile for VOCs, which varied based on age, gender and area of the body The team currently uses phones imported from Europe. being examined. These imported phones are currently the only ones com- patible with the software that feature a camera and a In research published online recently in the British Jour- video screen located on the same side to allow people to nal of Dermatology, Gallagher and his colleagues sam- tape themselves while watching the screen. pled air above two skin sites – forearm and upper back – in 25 healthy male and female subjects. They ranged in According to Eve Riskin, UW professor of electrical age from 19 to 79. engineering, mobile video sign language won’t be wide- ly available until the service is provided through a com- The researchers identified nearly 100 different chemical mercial cell-phone manufacturer. The team has been in compounds coming from skin. A normal skin profile discussions with a major cellular network provider that varied between the two body sites, with differences in has expressed interest in the project. both the types and concentrations of VOCs. Aging did not influence the types of VOCs found in these profiles; A YouTube video of the prototype posted by the UW however, certain chemicals were present in greater team has gone viral among deaf people around the amounts in older subjects. country. “A lot of people are excited about this,” said Riskin. Implications of the research are considered to be vast. Together, the two studies may help advance development youtube.com/watch?v=FaE1PvJwI8E

8 ABILITY ABILITY 9 always thought ultimate fighting was a brutal sport, until I started following I politics. At least the fighters shake hands after they beat the hell out of each other.

Why anyone would want to run for public office is beyond me. The scrutiny is relentless. One thing that would disqualify me is, well, my past. The press would pick through it like a mother chimp grooming bugs out of her baby’s fur. They would find my history of

10 ABILITY shoplifting, gambling and spousal abuse. (That time rights we have left. Our government officials pick at my wife kicked me to the curb.) Then there were those our freedoms like a little girl at a state fair pulling nights with ladies of the evening. I’m sure that would- chunks off her fluffy wad of cotton candy. I say keep n’t help my campaign. For some reason, soccer moms legislation out of it: if you want people to lose their tend to frown on revelations of debauched sex and rights and freedoms, tell them to get married. But I Jell-O shooters slurped off a partner’s tummy. digress. Where was I? Oh right, politicians groveling for bucks. I say take the money out of politics and put With every politician, there’s always going to be some it in my 401K. sort of sex scandal. Nothing is off limits, prostitutes, teenage boys, it’s all fair game. If a politician isn’t Money is certainly important to get into office. Let’s cheating you, he’s probably cheating on his spouse, but face it, you need cash to bash. The more dollars you he’s most likely doing a little of both. That’s how he have, the sleazier you can make your opposition look. spreads the wealth. But, a good sex scandal means If your opponent did cocaine when he was in college publicity… and unlike the woman he’s with, the pub- and you have a small budget you might only be able to licity is free. take out a negative ad in a small town paper.

I’m sure that the moment I declared my intention to run On the other hand, if you’ve been able to rake in some for office though, piles of bones would pour from my major dough from supporters, you can run 60 second closet like a rush of polluted water breaking through a TV commercials all over the country. While superim- New Orleans levee during in a hurricane. Most of the posing the head of your powdered nose paranoid oppo- time, a candidates downfall is the result of some seedy nent fumbling with a big word as an announcer with a sex scandal. On the upside, if they would just look at deep, snarling voice chimes: “You want this man hoof- my current state; they’d see that I’ve changed. I’m mar- ing big fat rails in the oval office while Kim Jung Ill ried, which means I have no sex life anymore. points a missile at your city? Can we really trust a frat boy junky who so strung out he can’t even pronounce Why do people choose public office? The desire to the word Hezbollah? This message approved by make a difference? To change the world? To help the Everybody who’s a Democrat.” little man? No, the truth is more primitive. Through years of watching the news and reading the newspaper, Could you imagine having to give speeches every day? I’ve deduced an Einstein-like mathematical formula to Not me. Whenever I had to give an oral report in help understand the hunger to be a government offi- junior high school, I was throwing the night before, cial: Politician equals power and greed squared. and then spent the next morning trying to convince my mother I couldn’t go to school because I had Polio and The politician is known as a public servant, which is Scarlett Fever. It never worked, and I had no choice obviously a misnomer. The day a Congressman comes but to give my presentation as a dark, wet spot grew in to my house and weeds my flower bed, walks my dog, the crotch of my pants in front of a giggling class. runs the kids to dance class, gets me a beer, feeds me grapes, and throws in a back massage, then I’ll call I think my main hang-up would be taking a stance on a him a “servant.” (Don’t get any ideas Barney Frank.) particular issue. The problem is I want everyone to like me. If people were protesting something I supported, I In fact, these people are far from servants; they are would switch positions right then and there. I can’t rich beggars. The majority of their time isn’t spent on stand to be hated. I hate it. I would try and flip-flop so solving national problems like illegal immigration, much that nobody knew what I stood for. “I say raise health care, social security, alternative energy or, most taxes while we’re lowering them,” or “I’m for gay importantly, getting the talentless Paris Hilton out of marriage as long as the couple is straight.” the limelight. No, their time is spent hobnobbing around the country on first class flights, staying in five Something must be wrong with someone who wants to star hotels, drinking top shelf booze and spending live their life under a microscope. What are you an nights with high class hookers. Instead of fixing the amoeba? No matter what you do, half the people think trade deficit, they’re sticking their corrupt-stained it’s right and the other half think it’s wrong and only hands out and snatching campaign funds so they can half of those people vote. Politics. What a filthy way to win another term in office. Blue blood homeless bums spend your life. Absolute power corrupts absolutely. living in great big homes… with servants. They know The Romans will attest to that. Orgies were their that without that money, they’re back to eating ribs at downfall. (But what a way to go!) Chili’s and being told their hour is up by some crack- infested, street walker. Thank you folks. You’ve been a great audience. Don’t forget to tip your waitresses and congressman. Yes, much time is spent on campaign financing, which might be best because it keeps them from convening “Ham on by Jeff Charlebois and passing laws that slowly erode what minuscule a Roll”

ABILITY 11 s the new Green Guy, I thought it’d be interesting to start off with a review of some typically guy technologies and Aactivities that have an eco-friendly edge. AN OUTHOUSE THAT’S IN

Falcon Waterfree Technologies, as the name implies, does its business without H2O. In fact, the company estimates that each of its products saves an average of 40,000 gallons of fresh water per year. If you happened to make it to the 2008 Summer Olympics in Beijing, you may have had the pleasure of using the product.

What’s the product, you ask? I’m talking water-free urinals. Now, if you’re like my wife, you may have let out a disgusted ewww! But consider this: As much as five percent of all fresh water is used to flush away urine. With these new-fangled urinals, however, water does not need to be transported to the unit nor away from it. In addition, no energy is expended on the back end to treat water.

Not only do water-free urinals contribute to our environmental well-being, but they also save money. For starters, they save 100 percent of the water that would be going through the urinals, and therefore, 100 percent of water and sewer charges. More- over, there’s little maintenance, as there are no moving parts. Because no hard water runs through them, drain lines remain free of calcification. The only mainte- nance involves changing the cartridge three to four times a year.

This technology is not only water-free, but also odor- and trouble-free, in terms of operation. The urinal consists of a vitreous china or stainless steel fixture and a cartridge that fits into a drainpipe at the bottom of the urinal.

This unique sustainable product was not only a showcase water conservation technology at the Beijing Olympics, but it also helped a city of 18 million people accommodate the additional needs of Olympic visitors and athletes. Based on average annual water savings of 40,000 gallons per urinal, the 165 water-free urinals in Beijing will save 6.6 million gallons of water per year.

I guess we shouldn’t expect anything less from the urinal of Olympic champions.

falconwaterfree.com WATER YOUR LAWN BY COMPUTER

Cyber-rain isn’t something out of a futuristic novel. It’s here today, and gives homeowners, property managers, building owners and landscape contractors an easy way to save 30 percent to 70 percent on their landscape watering bills with the use of a personal computer. Los Angeles-based Cyber-Rain develops these smart irrigation systems for home and business.

“From day one, our goal has been to build products that will help people use technolo- gy to save money and protect the earth,” says Judy Guido, chief marketing officer for the company. “Watering creates a major drain on our natural resources, and smart irri- gation can play a major role in saving water.”

By using personal computers to wirelessly control sprinkler systems, Cyber- Rain enables users to program their watering schedules, set reminders about when to fertilize, and even measure water savings through an easy-to-use intu- itive interface. The Metropolitan Water District of Southern Califor- Using super-bright lifetime LED bulbs, the solar flash- nia even offers local residents rebates for water saving light generates the greatest amount of light with the devices installed at their homes, including the Cyber- least amount of environmental impact. Bulbs are rated Rain smart wireless irrigation controller. Not in South- at 11 continuous years of burn time or 22 years of burn ern California? Check with your local water district to time when turned on only at night. The flashlight comes see what rebates they offer for this kind of device. fully charged and holds its charge for more than three years. It’s convenient and pays for itself by eliminating The Cyber-Rain system costs about $350, and is esti- the need to replace expensive batteries and bulbs. So go mated to pay for itself within a few months. Ka-ching! forth into that dark night!

cyberrain.com by Renne Gardner LET THERE BE (BATTERY-FREE) LIGHT hybridlite.com

More than one billion batteries are disposed of every year in the United States! As an owner of a dozen flashlights for garage work, night hiking and camping, I’ve certainly contributed my share of these toxics tubes to the waste stream. Sure, nickel-cadmium rechargeable batteries help reduce the amount of used battery disposal, but eventually even they wear out. With the solar flashlight, there are no more worries about disposing used batteries. This hybrid product actually taps sunlight and indoor lighting to recharge itself. Properly juiced, the Hybrid Solar Light works day or night. The unit even contains a back-up battery, which kicks in if the solar capacitor’s charge has run down. That ensures that there’ll be light when you need it.

ABILITY 13 LET’S VOTE… BY ANY MEANS NECESSARY!

any of us may feel as if we’ve been perpetually in the midst of a presidential campaign for quite some time. In reality, we are just now gearing up for the Mheart of election season. As we head into this heated contest, it is a good time to reflect on the status of voters with disabilities in this country.

In the 2000 election, people with disabilities were, on average, about 12 percent less likely than those without disabilities to vote. Although this was a significant difference compared to the population of people without disabilities, it was an improvement from previous years. In the 1998 elections, people with disabilities were about 20 percent less likely than people without disabilities to vote, according to “Voter Turnout, Voting Difficulties and Disability in the 2000 Elections: Laying a Challenge at Democracy's Door,” by Lisa Schur, PhD, and her col- leagues at Rutgers University and the University of Arkansas.

While representing an improvement over previous years, the lower voting rates of people with dis- abilities in the 2000 election, represents a significant number of voters left out of the political process. According to Dr. Schur's report, if people with disabilities voted at the same rate as those without disabilities in 2000, there would have been approximately 3.2 million additional voters, which would have raised the overall turnout rate by 1.7 percent, and perhaps influenced the out- come of certain election contests. A FEW VOTES DECIDED ELECTION

In the controversial 2000 Florida election, for instance, George W. Bush beat Al Gore in the offi- cial tally by only .009 percent. Similarly, “[f]lip fewer than 60,000 votes in Ohio, and John Kerry is President in 2004. Nixon would have won in 1960 with 5,000 shifted votes in each of Illinois and South Carolina, and 12,000 in New Jersey,” according to ABC commentator George Stephanopoulos in his article, "How To Be A Better Voter," which appeared in a recent issue of Parade Magazine. In other words, every vote makes a difference. Given the number of people with disabilities in this country and how close recent elections have been, this voting block has the potential to sway an election.

However, people with disabilities continue to face myriad obstacles. According to a 2004 National Organization on Disability/Harris Poll Survey, 21 percent of American adults with disabilities— representing more than eight million potential voters—say that they have been unable to vote in a presidential or congressional election due to barriers faced either at or getting to the polls.

These statistics are not consistent across all states. For example, in Georgia, Arizona and Califor- nia, only about one-third of those with disabilities who could vote actually did so in the 2000 elec- tion. While Maine, Minnesota and New Hampshire saw much stronger turnouts of voting-aged people with disabilities, averaging above 50 percent, according to a report called the “State Cen- sus Disability Numbers and Voting Turnout.” Among those who do vote, people with disabilities are more likely than those without disabilities to use non-traditional methods. People with disabil- ities are almost twice as likely as other citizens to vote by absentee ballot. Among those in this group who voted, 20 percent used an absentee ballot, compared to 11 percent of people without disabilities. COMMON PROBLEMS AT THE BOOTH

One of the most frequent barriers for people with physical disabilities is inaccessible polling places. As of 2001 the Government Accountability Office found that 84 percent of polling places limit access to people with disabilities. For example, there may be stairs at the entrance to a polling place. Many times a polling place does not have accessible, clearly-marked paths from the parking area to the accessible entrance, which allows voters with disabilities to enter and exit safe- ly and independently. Physical accessibility often poses a problem because polling places can be

14 ABILITY in many different types of settings, including some that are not typically open to the public or open only to limited audiences, e.g., church base- ments, meeting halls or a neighbor’s garage.

In other situations, voters with disabilities may be denied accommoda- tions, given inadequate ones or encounter poll workers who are unfamil- iar with how to provide them. Election workers may be unprepared, for instance, to provide chairs for voters with disabilities who must wait in a long line.

Many people with disabilities have faced inaccessible voting equipment or procedures. Common voting machines include those with punch-card ballots, levers or paper ballots that create barriers for persons who cannot press buttons, use a marking pen or levers. Voters who are blind or have vision disabilities and cannot read the text in these machines are essential- ly prevented from voting independently. Finally, the set up of voting machines and booths can make them inaccessible to those in wheelchairs.

Similarly, written instructions may not be provided in alternative for- mats, such as large print, Braille or audio. Information that is provided orally, e.g., instructions about where to go, may not be available in a written format.

All of these barriers provide a disincentive for people with disabilities to vote at the polls, and frequently can discourage a person with a disability from voting at all. LEGAL PROTECTIONS

In 2002, Congress passed the Help America Vote Act, which is commonly referred to as HAVA. Largely in response to the challenges posed by the 2000 election, HAVA affects every part of the federal voting process, including voting machine regulations, provisional ballots, voter registra- tion and complaint procedures. Election officials and legislators in each state are responsible for implementing HAVA.

Among the requirements of HAVA are a number of specific mandates designed to increase access for voters with disabilities. Most significant- ly, HAVA provides an explicit right to participate in elections, and to cast a private and independent ballot. As part of this mandate, HAVA requires states to ensure that their voting systems are accessible to people with dis- abilities. Specifically, “[t]he voting system shall . . . be accessible for indi- viduals with disabilities, including non-visual accessibility for the blind and visually impaired, in a manner that provides the same opportunity for access and participation (including privacy and independence) as for other voters.”

HAVA also requires that voting machines must be accessible to people with disabilities. Each polling place must have “at least one direct record- ing electronic voting system, or other voting system equipped for individ- uals with disabilities.” This provision has been among the more difficult to implement, given the controversy over electronic voting. For example, some voting advocates, including many government officials, want to require touch-screen voting machines to be able to produce voter verified paper audit trails, or a printed record of each person’s vote. These advo- cates say the electronic machines are vulnerable to error, and that a paper audit trail will address mistakes or fraud that would otherwise be difficult to fix.

However, many disability advocates believe that this requirement has

ABILITY 15 slowed the implementation of touch-screen voting, programs are physically accessible, provide reasonable which is often the only way certain individuals can vote accommodations and offer materials in alternate for- via secret ballot. Voting machines with touch screens mats, among other requirements. In addition to applying and optional audio via headphones address inaccessible to voting laws, these rights also govern town hall meet- voting by allowing people who are blind or have limited ings and debates. use of their hands to vote by themselves. Otherwise, voters with such disabilities must be accompanied by STAYING ENGAGED IN THE PROCESS someone who can provide assistance or read the ballot to them. People with disabilities should start thinking about access to the polls long before any election. To ensure HAVA also addresses the right of people with disabili- states and elected representatives remain committed to ties to vote by providing federal funds to make the path enforcing voting rights laws, it’s important for the dis- of travel, entrances, exits and voting areas of each ability community to be proactive and engaged. polling facility accessible to individuals with disabili- ties. The Department of Justice has developed a check- For example, under HAVA states must develop a plan list that is a start-to-finish guide to creating accessible for implementing voter accessibility requirements, polling places. which includes an explanation of how it will adopt vot- ing system guidelines and processes. People with dis- The voting legislation also mandates that states provide abilities and disability advocacy organizations should be information about the location of accessible polling informed about their state’s plan so that they can deter- places to people with disabilities. It requires that elec- mine where additional improvements may be needed. tion officials, poll workers, and election volunteers receive training on how to best promote the access and Anyone who experiences problems on election day participation of individuals with disabilities. should call 1-866-OUR-VOTE (1-866-687-8683). Legal volunteers with the National Campaign for Fair Elec- HAVA contains two enforcement mechanisms: First, the tions will be staffing phones to provide any needed Attorney General may bring an action against a state advice about your voting rights. regarding inadequacies in its voting system, provisional voting, voting information requirements and computer- Given the discrepancy in voting turnout for people with ized statewide registration list requirements. Voters who disabilities, it is clear that there is still much work to do. have encountered a violation of HAVA can request that However, armed with information and legal resources, the U.S. Department of Justice seek compliance against we can ensure that the right to vote is a promise fulfilled the state through the court system. The department has for every American. begun to take action against non-compliant states. For example, a federal court recently ordered the state of by Shawna L. Parks and Paula Pearlman New York to provide voting systems that are accessible to voters with disabilities at each poll site by September Shawna L. Parks is the Director of the Civil Rights Litigation Project, and 2008, and to replace lever voting machines by Septem- Paula Pearlman is the Executive Director of the Disability Rights Legal ber 2009. Center.

Second, states must establish complaint procedures disabilityrightslegalcenter.org allowing people to file written complaints and request hearings to remedy violations that involve election tech- nod.org nology and administration. Within 90 days of a com- newstandardnews.net plaint being filed, a state must determine whether or not there has been a violation. ada.gov/votingck.htm

To ensure that relevant government officials are on notice of voting problems, people with disabilities should use both means to register complaints under HAVA. In addition to HAVA, the more general disability rights laws, such as the Americans with Disabilities Act and Section 504 of the Rehabilitation Act, continue to apply to voting and voting related programs. These statutes require public entities to ensure that their pro- The Mission of the Disability Rights Legal Center, formerly the Western grams, services and activities are accessible to people Law Center for Disability Rights, is to promote the rights of people with with disabilities. This would include activities related to disabilities and the public interest in and awareness of those rights by providing legal and related services. We are located on the campus of voting, although there is no explicit requirement to pro- Loyola Law School in Downtown Los Angeles and work with Loyola Law vide independent and secret voting. Nevertheless, under students in all of our programs. these laws, state and local governments must ensure that

16 ABILITY ABILITY 17 like, “Whew!” That showed us an area we need to work on, because it’s not just the person with cerebral palsy; it could be an elderly person with arthritis, or anybody with a dexterity problem, or someone who’s busy with their other hand. The reality is that any one of us could become disabled at any time. Everything becomes more of a challenge as we get older and our bodies run down.

If you’ve ever watched a single mom with a toddler get on an airplane, it’s like she essentially has no hands. She’s got the toddler, and a stroller she has to stow. Maybe she’s carrying a diaper bag and her carry-on and a car seat and trying to herd the kid down the aisle. My EARNING THEIR WINGS hat’s off to that lady.

f you’re blind, you shouldn’t have to touch every- AM: And the toddler’s no help. thing in an airplane bathroom to locate the flush han- dle on the toilet. If you have mobility issues, it Curtis: Yeah. If you have to buckle in a squirming child, I it gets worse. So everything that we implement to shouldn’t take you half the flight to buckle your seat- belt. Boeing, which builds and sells planes to all the address disabilities makes it better for everyone else as major commercial airlines, has implemented a variety of well. design measures to ensure that passengers with disabili- ties or special needs have a pleasant flight. AM: When people think about accessibility on a plane, the obvious thing is a wheelchair. ABILITY Magazine recently spoke with Boeing staff members, Vicki Curtis, Millie Brown and Geoff Potter Curtis: We did a workshop this spring where we invited about these design and accommodation initiatives for four airlines, some seat manufacturers, and the Open airline passengers with disabilities. Vicki Curtis is a Doors organization to the Disney Institute. Our focus senior engineer who works on accessibility design. Mil- was to get on and off an airplane with a wheelchair. lie Brown focuses on reasonable accommodations and People say, “Disney? Why Disney?” Well, getting on Geoff Potter works on employee communications for and off airplanes can be real similar to getting on and the company. off a ride. And when we went out to Disney World— this was one of my better business trips—we studied AM: Who would like to start? how they accommodate a person in a wheelchair with- out stopping the whole ride. For instance, they give the Curtis: I guess we could start with me. I work in The person in the wheelchair the option to stop the ride if Concept Center. We primarily do research and product needed, or they can transfer the person into a car and development. We’ve been focusing on a number of pro- then add that car to the ride, so there are a variety of jects, trying to make the airplane have as few bound- options to accommodate people without unduly delay- aries as possible, which is quite a challenge. It is a real ing the ride for everyone else. confined space, and you can only do so much. But there are simple changes that you can make. To gain more They do a variety of things, and we thought, “Wow, insight we hired an ethnography company to do fly- maybe we could incorporate some of those on an air- alongs with passengers who have disabilities. plane.” We came up with several ideas that we could work on. Some of the seat suppliers went back to their Ethnographers study people in a situation. For us, they home companies, and I’m hoping they’re working on videotaped people getting on and off airplanes, and something that’s going to make a difference. also during flight. It was eye-opening. We watched a gentleman with mild cerebral palsy, a blind person, a AM: Sounds like follow up will be important. person who was partially deaf, and a couple of people who had polio. So it gave us a variety of insights. If Curtis: Yes. Regarding motorized wheelchairs, another you ask any of these people if they have issues flying, thing we did is invite Bombardier out. As you know, they’d say, “no, no, no.” Other people might, but not wheelchairs weigh up to 400 pounds, and are difficult to us. Yet on the video, we saw them encounter a number get into the cargo area of a plane. So we had four air- of difficulties. lines and probably six wheelchair manufacturers, and we built a mock-up of the cargo door for a 737 and for a We watched the gentleman who had cerebral palsy CRJ plane. We invited everybody out and brought in a spend, I don’t know, maybe 30 seconds with his seat 400-pound wheelchair, and said, “OK, get it in that little belt, which should have been a five-second thing. We hole there.” The airlines discussed their issues with it. watched him struggle, and when he got through, he was It’s not likely we can change thousands of 737s. We

18 ABILITY understand that it wasn’t a good accessible design in the experience. After the first day, some people thought, first place. However, the wheelchair manufacturers were “This is really good, we can do this.” By the second all over the challenge: “Wow! OK, if a person in a day, however, the entire team was crabby and tired. We motorized chair is going to travel,” they said, “this is a even went out to lunch at an Italian restaurant, and the real challenge.” There are a number of things that manu- guy who wore the big heavy leather gloves said, facturers can do to make the chair fold up or get a little “What I ordered depended on my capabilities. Now smaller, so it can be stowed without being damaged. I’m limiting my choices.” Pasta was not going to work Some of the airlines worked together to brainstorm the for him. safest way to get it in there. We asked questions like: Can you tilt it over? Are there different tools that we Potter: Beyond the team that Vicki works with, Boeing’s could use to help get a chair in there, and then upright it got a number of events to help spread that kind of so that people arrive with their chair intact and not dam- awareness to people who don’t have disabilities. We aged? It was real eye-opening for everybody involved. held a sign language class in Philadelphia. We had a number of able-bodied managers play wheelchair bas- The 737 was developed before the Air Carrier Access ketball in California. We included those events in a cul- Act. I don’t even think that legislation outlines require- tural diversity video that we show employees. And we ments, but obviously everybody likes to get to their had this other event during the summer in Portland that journey in one piece. If you’ve got a wheelchair that’s was like the “Amazing Race” TV show. damaged when you arrive at your destination and now you don’t have your wheelchair, it ruins your whole trip. The Portland event had 14 challenges, and each one of those had a diversity component. One of them was, Most airlines understand that it’s not the money “OK, you have to complete this task, but the person giv- involved, it’s the experience the person has with your ing the instructions only spoke Spanish.” And none of airline. You know, we also did a study on aging. We the managers got it done, if I recall correctly. (laughs) worked with the Ford Motor Company to obtain copies We put headphones on some people and had them try to of their Third Age Suit. I’m not sure if you’re familiar order a coffee from Starbucks without the ability to with that. It’s a coverall that you put on and it restricts all hear. In another challenge, a person was blindfolded and major joints, like your neck, your elbows, your knees, had to actually find a guide dog and navigate a course. your back. Some of our younger engineers put them on The managers had a lot of ‘ah-hah!’ moments. and then flew in them—via Alaska Airlines—from Seat- tle to Spokane, which is about a 55-minute flight. They AM: We were invited to a conference on accessibility had a little list of things to do. The list was in six-point issues that American Airlines held several years ago. font. The dark gray letters were printed on a medium They also invited then-Miss America, Heather White- gray background, so it had no contrast. We gave them stone, who is deaf. They asked her if her flight was heavy-weighted carry-ons to simulate the lack of good. It was a benign question. Her response was strength or reduced strength. They wore weight-lifting anything but. She was really frustrated. Apparently gloves, so they had little dexterity. All the younger engi- some emergency happened on the flight, and the cap- neers said, “Getting old really sucks!” (laughs) tain announced to the passengers what was going on, but since she’s deaf, she had no clue what was hap- They had to turn on the overhead light, adjust the air. pening. She saw the reaction on all the passengers’ Engineers thought the tiny switches were discreet and a faces, but nobody could tell her what was going on. really good idea, until they couldn’t see them or reach She asked American Airlines: “What are you going to them. They thought, “That design really stinks, maybe do for passengers who are deaf when something hap- we should be doing something different.” When they pens? Have you thought about your passengers who got to their destination, those engineers shed those suits are deaf, and can’t hear the commands or understand as quick as they could. You know they were thinking, “I what’s going on? Did you all think about that when want to go back to my young body!” you were putting together modifications for building your planes?” AM: Putting them in the other person’s shoes is great. Curtis: Being deaf is all about communication. It’s the Curtis: We’ve even had workshops on airplane lavato- same as if I went on a trip to Japan and couldn’t under- ries, which are a big problem as well. Everybody on stand anybody. It’s a real hindrance. It’s the same thing the team had to undertake the role of a person with a for a deaf person. You don’t hear any of the announce- different disability. We had one guy wear leather work ments. Yet nobody can see that you’re deaf, so that adds gloves. We had a person with an arm in a sling, which to the challenge. So we’ve worked on systems that is a minor thing, but it’s not just about using that arm, would provide conversation as well as translate. I don’t it’s also about balance. You face balance challenges think the technology is there yet, but we’re working on when you can’t use both of your arms. We had a per- a means of communicating. It’s something that every- son who normally wears contacts go two days without body’s going to have to address as Baby Boomers age. them to experience the vision difficulties some people

ABILITY 19 Brown: Vicki, as you know, they have those drop- They’re at the service end of it, we’re at the airplane down screens now on some airplanes that use caption- end of it, so we team up to come up with solutions. I’m ing. Maybe the airlines need to utilize those a little bit kind of sensitive about sharing things that a certain air- more with all the messages that they communicate, line is doing, but I always strongly suggest that they even at the beginning and end of the flight. I think send their solution to the competition. I don’t know if that’s one of the ways we could probably move for- they do that or not. I do know that it’s a great network ward. Captioning is really important for us with all our of people; everybody wants to make everything as communications, all our videos, all our training. We accessible as possible. Oregon State University was an make sure that we have it available, and even with our important part of the workshop on stowing motorized WebEx meetings, we can contract with someone like wheelchairs on airplanes. They co-hosted the work- Colorado Captioning to make sure information during shop with Boeing and helped coordinate participation the WebEx meetings is available to everyone. I think by all the non-Boeing players. we’re headed in that direction; we just haven’t com- pletely gotten there yet. I know in wheelchair stowage, the airlines work really closely together. They say “This is what we do. What do AM: There’s voice recognition software. Announcements you do?” Nobody wants to ruin the trip. We talked about could show up on a screen. training people. It seems that with the baggage handlers, however, there’s an awful lot of turnover. You can get Curtis: I’ve been working with that software. It is a real summer students working, and they’ll be in there for challenge, I’ll tell you. I guess I must mumble a lot. three months and maybe see two wheelchairs.

Potter: That reminds me of the opening of The Right They try to work really hard on coming up with the right Stuff. You remember, where the book talks about all the answers. This is a passion of mine. I’m getting older, and pilots seeming to have this kind of relaxed Southern when I retire, which is not too many years off, I’m going accent. Writer Tom Wolfe’s contention is that it all to be flying, and I want to be comfortable. comes from that barnstorming test pilot Chuck Yeager. So the voice-recognition systems have to be able to deal AM: It’s like you said earlier: At any moment, any of us with the accents, too, I suppose. could find ourselves experiencing these issues.

Curtis: These systems just need to be more advanced. Curtis: If we’re lucky enough, we’ll all grow old enough to experience some of these issues. Until then, it’s just AM: The trend is heading in that direction. You men- the everyday challenges, like having too many things in tioned the restrooms earlier. Is anything happening with your hand, or trying to do too many tasks at once. those? Potter: We have a month during which we deal with dis- Curtis: The restroom in itself is a big challenge on a ability employment awareness. single-aisle airplane like a 737. Space is such a rare commodity. It’s so expensive. You cannot remove AM: Is that October? seats, so there’s the challenge of making the lavatory itself accessible. And the aisle is so narrow that even if Potter: It is October. We do some communications, we you have an accessible lavatory, you still have to pro- do a video for our employees, we do a series of events, vide some means of getting the person to the lavatory. again, like the wheelchair basketball game. We try to And that gets to be a challenge. We’re about to under- educate our employees in general about the need to take another project this fall to make the lavatory more respect people of different backgrounds and recognize accessible. We would like to address the needs of any- the challenges that people of different abilities face. body who typically uses a wheelchair, is blind or has dexterity issues. Being blind in the lavatory is particu- Curtis: We’ve had discussions about the philosophy of larly challenging. You literally have to touch every- So-and-So is not a “typical” paraplegic, because thing to find the flush handle, the sink or the faucet. So they’re so “active.” We finally came to the conclusion we’re going to take a serious look at this very soon. that the people that we thought were not typical are very We’d like to make it totally inclusive. We have engi- typical. We dealt with a guy at Disney who’s a double neers and others within the company whom we can ask amputee, lost both his legs, and he parasails, sails, to come help us and get some good feedback. works at the Disney Institute. The guy is absolutely remarkable. There’s nothing he cannot do. We were like, We have a great network of airlines that we work with. “Oh, he’s different, he’s not typical.” But now we’re They try to do anything possible to be accommodating finding out that he’s the norm. Just because he’s missing and to make sure their services are accessible. In our legs doesn’t mean that he can’t do all those things. It’s network, we have a few people who will say, “This is really refreshing to work with him. becoming a problem in the airplane. Is there something you can think of to do?” And we’ll work together. boeing.com

20 ABILITY ecently we caught up with some good folks Parker: Any employee can join. The goal of the DNRG responsible for diversity and accessibility issues is to raise awareness among employees and within the Rat HP aka Hewlett Packard. As you may know, company about disabilities. The group also works with HP has an exceptional reputation for turning out quality Michael Takemura, director of HP’s Accessibility Pro- computers and computer peripherals such as printers, gram Office to test HP products and work with our but they’re also pretty solid at achieving a diverse work- developers to test internal applications and tools. The force and making their products accessible to people of DNRG also bring in speakers and host some wonderful all abilities. Here Mary Ellen Parker, HP’s manager of clients. Global Inclusion and Diverse Talent and Michael Take- mura, the company’s Accessibility Program Office AM: Are individuals with disabilities typically joining director spoke with us. in?

AM: Let’s start with what you do. Parker: Yes. The employee may have a disability or have a family member with a disability. The group is Parker: I work with HP’s global disability programs, its always sharing experiences and updating members global-flexible-work arrangement program, as well as about new assistive technology tools. Sharing best prac- manage a few of the diversity leadership development tices and driving awareness is a big part of their charter. workshops and recruiting conferences. AM: Do you know of any stories in which employees AM: Let’s talk about HP’s initiatives in the disability have come up with solutions that have had an impact on and diversity areas. the product line?

Parker: This year we have a new Executive Diversity Takemura: Yes. Take our HP notebook products for Champion who was appointed by the executive commit- example. To open the display, all notebooks employ a tee. The Executive Diversity Champion will chair a “single latch design” instead of the traditional “two newly formed HP Global Diversity Advisory Board latches” (one on either side of the display). This meets focused on aligning diversity priorities to support and the design principle of single-handed operation, reduces drive company-wide strategies. Additionally, HP spon- the cost of the product and improves reliability. The sors diversity recruiting conferences such as the Society Accessibility Program Office and our HP Global Acces- of Women Engineers and the National Society of Black sibility team work to integrate accessibility into the Engineers. We have also organized regional diversity product design processes, and the customer lifecycle summits for employees. We actually held one in Bulgar- (from how products are purchased, to customer support, ia in January and one in San Diego recently. The sum- to packaging, to documentation, and so on), in an effort mits are held to publicize job opportunities and promote to make HP products, services and information more networking and career and leadership development. We accessible to individuals with disabilities or age-related have about 81 employee resource groups representing limitations. Other design examples include the develop- many diverse groups. I’m the Human Resource liaison ment of an expansion base for notebook PCs that allow with our global HP Disability Network and Resource the height of the display to be adjusted. There is also a Group (DNRG), which currently has approximately 80 new “dual hinge” display that allows adjustability to members globally. help users of bifocals, trifocals, or multifocal lenses adjust the display to a more comfortable position. The AM: What does it mean to be a member? Accessibility Program Office also works with the

ABILITY 21 hp.com external website and our @hp portal employee Boston Marathon for the second time. We also have a intranet site to make sure they are accessible to cus- member who is in a wheelchair, and is headed to the tomers and employees who are blind, or who have low Paralympics as a table tennis player. These are the kinds vision and use assistive technology such as screen read- of members who, maybe once a quarter, come in and ers or screen magnification products. share their experiences. It’s just amazing to listen to what they have accomplished. AM: How do you conduct outreach to qualified appli- cants who have disabilities? AM: What do you think HP is doing well?

Parker: One way is by attending diversity conferences. Parker: We have a special group internally that handles HP also participates in the Department of Labor Circle special accommodations and equipment requests. We of Champions. In 2004, HP was honored with the also have a dedicated internal group that manages work Department of Labor’s New Freedom Award. We have related issues that employees have. HP does a great job access to their database of people with disabilities, in bringing awareness about disabilities, whether it’s a which we’ve shared with our recruiting organization. So disability that people are born with, or that they our staffing organization has access to quite a few data- acquired later in life due to illness, accidents or aging. bases and resumes. As a manager at a global company, I try to document all the different country laws regarding disability. When it’s AM: I didn’t realize that the Department of Labor had just the U.S., it’s easier, but it’s really challenging to an existing database. know the different laws in other countries. Some coun- tries mandate that companies hire a certain percentage Parker: It’s an extensive resume database maintained by of their disabled workforce in that country. Take Brazil, the Department of Labor’s Office of Disability Employ- for example. We have a training program there called ment Policy (ODEP). ABLE in which HP trains the participants.HP then works with our businesses in that location to fill job AM: Tell me more about the award that you won? openings with the ABLE trainees. HP also hires from the pool of candidates developed through the program. Parker: The company won the award for HP’s commit- ment to employees with disabilities and for our efforts HP has a similar successful program in Japan. Some- to maintain an accessible workplace. The award recog- times HP exceeds the goal of hiring that is mandated by nized HP for demonstrating innovative efforts to train, the country. It’s rewarding. HP has succeeded in not just recruit and hire people with disabilities. HP is the first bringing somebody in with a disability to meet a num- information technology manufacturer to have the acces- ber that’s mandated, but we also train these people and sibility features of all its products documented and try to accommodate them. We make sure they know available online. We take an active role in the develop- about the different tools and services HP has. They ment of worldwide accessibility standards and regula- might have a special need, so we’ll work with the coun- tions. For instance, we have tools and services available try HR managers to make sure that they receive whatev- for our employees with disabilities. For employees with er it is that they need. certain disabilities, we have a special hotline for our IT support desk. We also offer WordZXpressed, a voice- Finally, HP is focusing more attention on the aging mail transcription and telephone dictation service. For workforce. Many HP customers are experiencing a sig- someone who is hard of hearing or deaf, there is a ser- nificant aging of their workforce, and are looking for vice where they can send phone messages, which can be ways to make those employees more productive. These translated quickly and sent back to them via email. customers look to HP for technology, best practices, and third party solutions that work together to help them AM: How does the disability employee resource group manage this rapidly growing issue. work? Do they have scheduled meetings or is it more ad hoc? AM: Anything else that HP is doing that’s unique, inter- esting or should be highlighted? Parker: This particular group, the Disability Network and Resource Group (DNRG), meets on a monthly Parker: Globally we offer our employees an umbrella of basis. The meetings are scheduled via a conference line flexible work arrangements. As manager of the disabili- and with Sprint Relay Conference Captioning (RCC). ties program, I find that for a lot of employees who are The challenging part is finding a time that works for disabled, it’s much easier for them to work from everyone in every time zone, since we have members home;sometimes that is the only option, as some people spread around the world. with disabilities can’t drive. Since 1973 HP has been a champion of flexible work arrangements, which allow In addition to the monthly meetings, the DNRG tries to employees to meet the challenges of both their profes- have an external or internal speaker on a quarterly basis. sional and personal lives. We have a member who is legally blind and just ran the

22 ABILITY If a person with disabilities were interviewing with HP jobs. We’ve also had disability mentoring days, which and another comparable company that didn’t have such are another great way to introduce job seekers with dis- a flexible work arrangement, the potential candidate abilities to our company and our workforce. would probably pick HP over the other company, because of our flexible work arrangements. AM: The Disability Mentoring Days sponsored by the American Association of People with Disabilities AM: Do you know of any situations where people have (AAPD)? done interviews from their home office? Parker: Exactly. HP was actually one of the first compa- Parker: Yes, our recruiting department regularly con- nies to take Disability Mentoring Day global at our ducts virtual interviews. locations around the world. We’ve also attended the Career Opportunities for Students with Disabilities con- AM: Has anyone been hired whom no one from HP has ference, and have partnered with them to sponsor their met in person? conferences in the past. hp.com Parker: I can’t confirm that, because I’m not in recruit- ing; but I do know that we conduct virtual interviews.

AM: That’s great. Especially for those who have trans- portation challenges, since public transportation is not what it should be.

Parker: We don’t have any public transportation that would bring you to our facility here, outside of Boston.

AM: Have you noticed that you can now put your video resume online? Parker: I have heard of that. I think it’s great in that it makes it easier for people with disabilities to apply for

ABILITY 23 24 ABILITY nita Kaiser was well on the path to a career in AM: What are you doing now? business, when a car accident sent her in another Adirection. Now she’s working on a Ph.D. that Kaiser: The master’s degree that I completed before I will help her make her mark in the area spinal cord had my baby was in rehabilitation science, and I’m injury rehabilitation. As a new mom, she’s creating working on a doctorate in that field. I would like to innovative, hands-free ways to care for her growing have a career in rehabilitation science, and to continue baby girl. Here she speaks with ABILITY Magazine. conducting research on spinal cord injury to improve the quality of life of people living with it. I’m also ABILITY Magazine: We’ve noticed that you’ve done involved with the Canadian Spinal Research Organiza- some writing. tion, which has an affiliated arm, the American Spinal Research Organization. They’re both geared towards Anita Kaiser: I wrote a health article for a magazine finding a cure for paralysis. So I’m very much involved called Outspoken for the Canadian Paraplegic Associa- with that as well, although the research that I would do tion. I’ve also published a few mini-research papers. myself once I finish the doctorate would be more in line with rehab. AM: Before your 1996 injury, what were you doing? AM: Are you doing any lab work while you work on Kaiser: I’d just completed my undergraduate degree and your PhD? started working full-time as a computer operator. My plan was to work for about a year, make some money Kaiser: No. Although I did lab work while I was com- and return to school. Ironically, I was looking at study- pleting my master’s, when I got a full scholarship in the ing either physiotherapy or chiropractics. I had the last year I had to quit, as one of the criteria for the injury and spent a whole year in rehab getting physio- scholarship is to be in school full-time. I’m still affiliat- therapy. ed with the hospital because my university and the hos- pital are linked, but I’m not working on any other AM: So you got injured on purpose, then, just to expe- research projects other than my own studies and my the- rience it? sis. Recently, however, I went on maternity leave.

Kaiser: (laughs) I was joking while I was in rehab that, AM: I heard that you had worked with a program called “Oh, I’m here just getting my practical right now, and I’ll SMARTRISK. go back and get the theory later.” But life has a funny way of working itself out. I studied computers the whole way through university because it helped pay for my education; however, it was kind of off-course for me. I was working in the sciences, but the com- Anita and husband, puter classes were geared more towards business. Faisal, will soon move to a new home that better So I really felt in many ways that my injury put my accommodates her get- ting around with ease. life back on track. Being in rehab, I managed to get connected with the right people, so as soon as I completed my therapy, I began volunteering with different organizations in the health care field. Obvi- ously at that point, my focus was spinal cord injury research and rehab. I’ve been in it now for the last 10 or 12 years and really enjoy it.

AM: What did you study?

Kaiser: My undergraduate degree was in applied chemistry and biology, which wasn’t leading toward a career in rehab. I would have been more focused in basic sciences, such as working in a lab for a pharmaceutical company. But I always enjoyed health care, and as I finished my degree I wanted to get into that field, namely physiotherapy and chiro- practics. So when my accident happened, I got involved and connected in the research at the hospi- tal and with organizations that were affiliated with the hospital.

ABILITY 25 Kaiser: Yes, SMARTRISK is an organization based here days. How can people pay attention to the road if in Canada that is dedicated to preventing injuries and they’re so busy talking on the phone? It’s learning how saving lives. One of its programs is SMARTRISK to be safe in everything you do in life, to limit your Heroes, which is basically a traveling road show. We go chances of injury. all across Canada and into the States to speak to high school students to encourage them to apply five key AM: So you had a baby recently? principles to their lives that will help to prevent them from being seriously hurt or killed, or getting other indi- Kaiser: In January. viduals hurt or killed. AM: Did your doctors express any concerns about you I tell students about how I got injured, and then from having a child? there give them a strategy and principles that they can apply to their lives. High school students are the biggest Kaiser: My level of injury is different from that of the risk-takers, especially those young men who perceive late Christopher Reeve. He was a quadriplegic as well, themselves as being invincible. That’s the age when but his injury was very high, at the top vertebrae of his they start driving, and, of course, there are parties and neck. He had literally no movement of his arms, nothing drinking. The five strategies are: buckle up, drive sober, basically from the neck down. wear the gear, get trained and think first. AM: He would have had a harder time having a baby… AM: At that age, they feel like they’re bulletproof. Kaiser: (laughs) Not necessarily. In general, men with Kaiser: Absolutely. As I look back on my life I think, spinal cord injuries have a harder time having a baby “Wow, my injury could have happened so much soon- than women because many of them will have some form er.” And I wasn’t even that high a risk-taker, compared of erectile dysfunction. But it’s not to say that they don’t to many teenage boys. But still, there are so many things still have sperm. In some cases, some men are still able that we do that are not smart, and that we could do in a to have an erection and have a child on their own, much safer way. We take chances that are completely whereas other men may need some sort of intervention unnecessary. to retrieve sperm and implant it in the female. So most women, as long as there isn’t any internal damage can AM: Tell me a little bit about your talk. How do you get pregnant naturally, carry a baby full-term and deliv- describe your situation, and how would it have changed er it as well. There’s no reason why you would need a if you had had a program like SMARTRISK before you C-section, unless there was a complication. had the accident? In my case, my daughter decided to come five weeks Kaiser: In my case, I sustained a motor vehicle injury. I early. She was kind of small, and she pretty much was a passenger in my sister’s car. We’d gone on a long slipped out. I didn’t even need any vacuum, forceps or road trip to visit friends for a fall weekend. We knew that our tires were bald, but thought, “It’s one last road trip. Once we get back, we’ll change the tires and get the car ready for winter.”

Often, you don’t really think about the long-term consequences of not maintaining your car, especially for a long drive like that. Now I always check out the car, especially the tires, before I even get into it, and make sure I keep up with all the maintenance checks.

In every aspect of life, you have to think about buckling up, not just in the car. It’s buckling up a life jacket or a helmet. “Driving sober” is not just drinking and driving; it’s also avoiding driving when you’re real- With adapted childcare ly sleepy or talking on a cell phone, equipment, Kaiser has help which is a huge problem these caring for baby Olivia.

26 ABILITY anything like that. The pregnancy and birth went quite smoothly. I think it would for most women with a spinal cord injury. It’s still considered high-risk because of the lack of sensation and move- ment, so we’re closely monitored throughout the pregnancy. But typically complications would not be expected.

AM: Can you hold your daughter’s bottle?

Kaiser: Oh, yes, that’s what I was going to say. I’m lucky that as a quadriplegic (anyone who has injury in the cervical spine—the neck), I have most of my arm function. Christopher Reeve broke the top two vertebrae in his neck, so he had literally no arm function at all, whereas I broke the bottom two vertebrae in my neck. I don’t have full finger function. Still, I’m actually able to do quite a lot for my child. I can feed her, I can change her, I can dress her. I often use my teeth to help me with fine motor decided to get a night nanny. So we have a lady who function, such as fastening buttons on her outfits. Some- comes in in the evening and stays overnight so we can times I’ll have to use my teeth if I can’t use the palms of sleep and be fresh and alert to deal with our daughter my hand to close it. For changing the diapers, I’ll grab during the day. So that’s worked out well. the tops of the diapers with my teeth to close it. So a lot of it is establishing my own style of doing things, but People have asked me, what it’s like to be a parent. I I’ve actually made out quite well. think I feel like any other person who’s had a baby. We’re obviously excited. I’m happy that I could still I’ve gotten some adaptive products. I had a crib built have children. It’s always been a dream of mine to have with the railing to move sideways rather than up and a child. Just like any parent, you want to be the best you down, so I can wheel underneath it. That way I can get can be and be a great model for your child. in and under the crib to attend to her. I had a table built to my height so I can change her, because most chang- I think a lot of times people with disabilities are per- ing tables are very high and often have drawers under- ceived to be asexual or incapable of taking care of a neath. So there are a lot of things I can do; it’s just dif- child. So that’s one of the things that I also consider to ferent from how my husband would do them. But I’ve be very important, to be able to represent the disability been able to figure out how to do most things for her, population and prove to extended family members and except bathing. My husband finds it a challenge, too. to society that we can be just as capable as anyone else. He usually tries to get someone else involved and it ends up being a three-person event. We have someone AM: Not that you have much free time right now, what hold the baby, while my husband washes her, and I dry with raising the baby, but what other things do you do her afterwards. for leisure?

AM: It sounds like any other young parent in that situa- Kaiser: Just before I went back to school to do the tion. It takes a village to raise a child. master’s, I was actually swimming competitively. I swam for about three years. I was actually trying to train Kaiser: We’ve been lucky. The family’s been support- for the Olympics, but I didn’t quite make it that far. I ive. Especially the first few weeks of dealing with a was at provincial level training for the national team. newborn, which are crazy for any new parent. We’ve Unfortunately, I missed qualifying by just a couple sec- had family come in and help us out a lot. We gave in onds in my final year before I went back to school. I about two or three weeks into the whole process and loved water sports. I got certified in scuba diving after

ABILITY 27 my injury. I also got my level 3 sailing rating. I have process of putting that together now. What are you enjoyed water skiing, downhill skiing, horseback riding going to do other than raise a wonderful child? What’s and biking. on your to-do list?

AM: So you have adaptive programs in different places Kaiser: I’ve enjoyed everything I’ve been involved with in Canada? since my injury, all the various organizations, including a hospital that does research geared towards rehab and Kaiser: I got involved in a lot of these things in rehab. I improving quality of life. Aside from SMARTRISK, I’ve was very athletic before my injury and knowing that I done a lot of work with the Canadian Paraplegic Associa- could still get involved in sports helped me to cope with tion, doing peer support by helping people who are newly my injury. A lot of the sports I’ve done have been adap- injured to get on with their lives. I got a lot of great help tive. Almost every sport that I used to do before, I can after my injury, so this is my way to give back. still do now, either using modified equipment or a modi- fied process. It’s been great. I really enjoy it. Obviously, I My master’s degree thesis focused on parenting when don’t have as much time now, but hopefully as my one has a spinal cord injury, so that was really great daughter starts to get a little older, I’ll be able to enjoy background for me. I’m continuing in that field with some sports with her. the doctorate. One of the things I’d like to do is open a parenting clinic at the rehab hospital where I stayed. AM: You’ve done mono-skiing? We have a gynecology clinic, we have a urology clin- ic, which also functions a bit as a fertility clinic for Kaiser: I haven’t done the mono-ski. But I have done the men, but there’s nothing to help women once the bi-ski. The mono-ski, I think, is more geared toward they’ve become pregnant or have a child. In some paraplegics. You really need to have good upper body cases, individuals who were either thinking about hav- position for that. The bi-ski is very similar, it’s just that ing children or who already have kids get injured, and it’s a bucket seat that sits on two skis. need to learn how to parent with a disability. I’d like to make sure they have the information, services and AM: The mono is a little more difficult, too. Depending support they need. on where your level is, the upper body has to be capable of leaning forward. We just came back from a trip to On personal level, we’re in the middle of building a Utah and skied with several people with different levels house that is wheelchair-accessible. We’re hoping to of spinal cord injury. We checked out the mono-skis, move in soon. which was— AM: Anything else you might want to share? Kaiser: Oh, you tried it? Kaiser: In general, I’m really happy with my life. One AM: It wasn’t as easy as it looked. of my greatest accomplishments, out of everything I’ve done, is having our little girl. I enjoy being a mother, Kaiser: I skied a lot before my injury, so I thought it watching her grow and working to raise her to be a would be quite simple. I thought that because you’re so wonderful individual who is compassionate and accept- low to the ground that your whole center of balance ing of all individuals, regardless of their abilities. would make it easier than it is. It takes some control to get the hang of it.

AM: Do you know a person named Chris Waddell? He’s a multi-gold medal Paralympian. We went to the top of the mountain where they held the Olympic men’s ski event in Utah, and he just went screaming down that mountain. It was just amazing to see him in action.

Kaiser: Some friends of mine have sent pictures of Para- Kaiser is a scholar- lympic skiers, and it’s just phenomenal. ship student at the University of Toronto. AM: Waddell has also become a public speaker.

Kaiser: Many of them become motivational speakers. What they’ve accomplished really helps inspire other people—disabled or not—to strive for their dreams and pursue whatever it is they feel passionate about.

AM: His new thing is climbing Kilimanjaro. He’s in the

28 ABILITY Top and center: The The John F. Kennedys, a Kennedy Pres- family that pro- idential Library duced countless pub- and Museum is locat- lic servants, including ed on a 10-acre park in President Kennedy, bottom Boston, MA. It is dedicated to center, and his nephew, Anthony, the memory of our nation’s 35th above left in bow tie and William, far right in president. Take a virtual tour of the library open collar shirt. on line at jfklibrary.org

n his 1961 inaugural address, President Kennedy sador to Ireland and founded Very Special Arts, a non- implored Americans: “Ask not what your country profit that nurtures the artistic talents of children who Ican do for you, ask what you can do for your coun- are mentally and/or physically disabled. try.” That same year, he founded the Peace Corps which, over the last four-plus decades, has supplied 190,000 In the following pages, we meet two members of the volunteers to 139 host countries. Peace Corps volunteers current generation of Kennedys who are continuing the work on projects that range from health and economic family legacy of service: development initiatives to AIDS education and environ- mental preservation. Anthony Kennedy Shriver is the founder of Best Bud- dies, an international non-profit organization which While the Kennedys have always encouraged service enhances the lives of people with intellectual disabilities abroad, they’ve also demonstrated public service and by providing opportunities for friendships and employ- charity at home: Within the late President’s own family, ment. His cousin, William Kennedy Smith, MD, helms one brother served as U.S. Attorney General; another iCons, an organization that links a worldwide group of has been a United States Senator since 1962. One of the physicians and patients through the internet. President sisters started the Special Olympics, which one son now runs, while a daughter serves as First Lady Clearly, the clarion call to public service that President of California. Still another Kennedy served as ambas- Kennedy issued over 40 years ago still resounds.

ABILITY 29 ounded in 1989 by Anthony Kennedy Shriver, Cooper: Did you ever picture it growing into what it’s Best Buddies is an international nonprofit orga- become today? Fnization dedicated to fostering one-on-one friend- ships between people with and without intellectual dis- Shriver: I’m not great at thinking what’s going to hap- abilities. Here ABILITY’s Chet Cooper speaks with pen five, 10 years down the road. I just keep my head Shriver about the worldwide growth of Best Buddies, down and keep working hard toward what I think is including successful initiatives and expansion into the right for Best Buddies. It leads me wherever it leads me. Middle East. We are pleased with where we are today, but we still have huge work to do. There are five million people Shriver: The great thing about Best Buddies is there’s with intellectual disabilities in the U.S. alone. They say something for everybody. You can be a volunteer in there’s 40 to 50 million people with disabilities in the some shape, form or fashion, whether you’re volunteer- U.S., and close to 200 million worldwide with intellec- ing to get your kids involved, whether your son or tual disabilities, so the population’s huge, and we’re just daughter is involved in their school program, whether touching the tip of the iceberg. It’s exciting and reward- you want to be a mentor yourself as an adult, whether ing, but it’s a daunting task. you want to get an online Buddy, whether you’re an employer and want to hire someone with a disability to This year, I spent time in Russia, Turkey, Poland, the work in your office—if you’ve got any sense of motiva- Middle East and Spain. People all over the world are tion and determination and want to give back, there’s a dealing with intellectual disabilities that pose incredible role for you at Best Buddies, which I think is pretty challenges; the need is so enormous. There’s a great unique. Even in Special Olympics, for most people, you opportunity to make a difference, so I’m grateful for can be a coach or a spectator, but you’re not going to that. But it keeps you on a treadmill all the time, that’s run the 50-yard dash. In Best Buddies, you’re running for sure. the 50-yard dash with your Buddy. People get a differ- ent level of experience by participating, as opposed to Cooper: Tell me about what’s happening with your gala. writing a check, though that’s important, too. But beyond writing checks, we need people to get involved Shriver: It’s going to be the biggest ball we’ve ever and give their time. held. We’ll probably raise more than $3 million in one night, so we’re way ahead of where we’ve been in the Cooper: We did an article about you years and years past. We’re honoring Sheikha Moza, the first lady of ago. Tell me about how your program’s expanded. Qatar. We’re giving her a Spirit of Leadership Award. We’re doing a lot of good things with Qatar, and pro- Shriver: There are about 220 people who work for Best grams that benefit people with disabilities are expanding Buddies in all 50 states now, and another 100 people in that country. We want to raise awareness about her outside the U.S. in 41 countries. Our budget’s over $20 highness’s work, not only in Qatar but in the Middle million. We run six different divisions. We’ve got a East as a whole. We hope that her leadership will inspire middle school program, high schools, colleges. We have other people in her position—either with her wealth or an adult-based program called Best Buddies Citizens. influence— to make a difference. I met the Emir, We have an online program called eBuddies. We have Sheikh Hamad as well, talked to him and had dinner our jobs program, which I think we had when I talked to with him. He also seems very interested in getting other you guys before. Our support-employ program is now in people to follow their lead in terms of educating and a few different cities in Florida, Massachusettes and providing opportunities for people with disabilities in California, and we’re trying to expand to other states. that part of the world, and in the world at large. That’s a We’re actually just launching that in Poland as well. huge goal.

The economy’s tough, but thank God we’ve got an The ball will also commemorate 20 years of holding this international, worldwide organization, where we’ve got event at my parents’ home. It’s pretty unusual for an lots of different streams of revenue coming in from all event like this to take place at a private home on this over the world, so we’re not as dependent on the state of scale for 20 years straight. I think it’s a huge accom- the U.S. market. plishment that the organization has been able to make that happen, and keep the event engaging, motivating

30 ABILITY and inspiring enough for people to come back year after How does it work? year. We have people who have been coming for 20 years. That means a lot to us. We’ve got additional sup- Cooper: At the moment one at a time. Our challenge is port as a result of this event being our 20th anniversary. finding funding and getting corporations to work with We’re going to have a great, diverse group from all us. Like Habitat, we go through churches, foundations, walks of the world, and great representation from the corporations… Middle East. We’ve got some Buddy pairs coming from Qatar who are going to speak. We just relocated two Shriver: I’d like to work it in somehow and try to do one people from the national office here to live in Qatar. I for sure. look forward to expanding to other countries in the Mid- dle East with the guidance and support of the disability Cooper: We might look at a model in which we do it in communities in those countries. I think it’s the begin- conjunction with your affiliates around the country. ning of something special. Shriver: That would be great. I’d like to do it. In the Cooper: That’s great. past, we’ve looked at doing something like that, as well at doing parks and similar projects. I just don’t want to Shriver: Yeah, right now in Qatar, our people are training be responsible for all the mechanics of it; I’d prefer to Qataris to run the program after they leave. So we’re get- partner with somebody else. But I’ve definitely been ting a lot of traction there. We actually just met with peo- wanting to do something like that for a while. ple at Carnegie Mellon University, who want Best Bud- dies there. They are going to recruit a bunch of their stu- Cooper: Going back to the center in Qatar, what was dents to be Buddies and escort people with intellectual your first thought when you visited initially? disabilities to a museum once a month. We’re trying to get some corporate volunteers to do that once a month, Shriver: I thought it was remarkable that they’d made as well. this huge commitment to deal with disabilities in such a small country. I’ve been to lots of countries with huge Cooper: Have you heard about the ABILITY House? amounts of resources, but they’re not investing that kind of money into developing world-class facilities that Shriver: Yes. focus on all forms of disabilities. So I think it’s an enor- mous reflection of Qatar’s values, and to have the First Cooper: We build homes, usually in partnership with Lady so committed to it and interested in it, I think, is either Habitat for Humanity (HFH) or the Fuller Center truly impressive and unique. for Housing, for families in which a member has a dis- ability. Volunteers with disabilities build the homes. I continue to be impressed by what they’re doing: the programs they provide, the facility, and the expertise of Shriver: Great! That’s where we could use Best Bud- the people there who are leading the facility. From the dies. Get the kids out there with their Buddies doing the moment I got there, I was amazed at their efforts to homes. expand the facility, so it can provide additional services.

Cooper: I just flew to North Carolina to start a house Cooper: I was amazed too. It’s state of the art. with Meredith College and Wake County HFH. Shriver: For sure. I think Her Highness and her center Shriver: Do you have the money to build multiple have a commitment to excellence in every field they homes? Is that a struggle? Or do you do one at a time? pursue. The more I get to know her and talk to her, the

(l) Shriver with his Mom, Eunice Kennedy Shriver, (c) with Best Buddies logo, by Keith Haring, and (r) with and his father Sargent Shriver. ABILITY 31 Anthony Kennedy Shriver and Her Highness Sheikha Moza, First Lady of Qatar, flank a portrait of Shriver’s uncle JFK.

more I see the consistency of their approach in every- Shriver: 1989. Next year’s our 20th anniversary. Time thing they do. I think the center is one aspect of it all, flies. but from the sports facilities, the education facilities, the new equestrian facility that they’re building, their bid Cooper: I think it’s great that some of your Buddies turn for the Olympics, the hotel they’re building, the resort, around and become mentors as well. everything is first-class. So it’s great that they haven’t left out people with intellectual disabilities. Often Shriver: It works nicely. nations, rich nations, look at that population last, not first. They’re establishing the blueprint for the country, Cooper: Tell me more about your job program. where that group is right at the top of the list. Shriver: I love helping people get jobs, helping them to Cooper: Anything else you’d like to share? get their own apartment, get married, have kids—it’s really remarkable. We want to give people with disabili- Shriver: I have so many different things happening all ties the opportunity to choose different types of jobs, not over the world that I could go on forever. I don’t know to have them all be in the service industries. If you want even where to start. to have a white-collar job, you want to put a tie and a jacket on, that job should be available to you. Cooper: Do you work with Special Olympics? I’m sure you’ll agree that the skill sets that a lot of peo- Shriver: Definitely. As you know, my mom (Eunice ple with special needs have are remarkable, and they Kennedy Shriver) started it and my brother (Timothy) can really be an enormous asset to an employer in any runs it. We collaborate on various projects around the office. I think for us to be able to share that knowledge world, when it makes sense. We obviously work with with potential employers is a great gift. Once they the same population as well, but with a different focus. accept it and get engaged in it, it’s an enormously important and motivating thing not only for their Cooper: Do you have any specific programs in which employees, but also for the leadership team in any Best Buddies are trained as athletes? office. So it’s something I’m proud to share, and I hope we’ll continue to expand it and get more people Shriver: There are different states and regions where it employed. The unemployment rate for people with dis- makes sense for the Buddy to become an athlete, or abilities is huge. Imagine if that was the case for every- where we have athletes who want to mentor or Buddy. body; the whole country would be upside-down. But We do it where it works and where we’ve got the trac- that’s how it is for people with intellectual disabilities. tion to do it. We get some good jobs in a lot of different cities, but we definitely need more. So again, we’ve got a lot of work Cooper: When did you start? to do.

32 ABILITY

Smith presents during a Demining Ceremony in Nicaragua

lobe-trotting William K. Smith, MD, founded the Smith: This past year, we completed training for about Center for International Rehabilitation, formerly 110 Iraqi health professionals, including physical thera- Gknown as Physicians Against Land Mines. The pists, hospital administrators and hospital-based physi- latter was co-recipient of a 1997 Nobel Peace Prize. cians. Through the Iraqi Ministry of Health—funded by These days, Smith also heads up iCons, an umbrella the World Bank—we engaged the University Clinical organization for a worldwide group of physicians linked Center in Tuzla, our partner program in Bosnia. The to each other and to patients throught the internet. Dr. Iraqis were flown there and received two to six weeks of Smith recently spoke with ABILITY’s Chet Cooper, and training, which they took back to Iraq. Thomas Chappell, MD, the magazine’s managing health editor. So I’ve been heavily involved in disability issues and training issues in conflict and post-conflict areas for Chet Cooper: We’ve met. about 12 years.

Dr. William K. Smith: At the UN, right? Cooper: You’ve used the internet in a very engaging way. Cooper: Yes, there and the World Bank— during their conference on disabilities. I think I met Eunice Kennedy Smith: One of our board members, Ken Rutherford, is a as well that day. land mine survivor. He did his PhD thesis on how the internet, as a low-cost tool to connect people, was cru- Smith: There are a lot of people in my family running cial in the formation of the International Campaign to around. (laughter) A number of us work on disability Ban Land Mines. This is rather remarkable because it issues. (Smith’s mother, Jean Kennedy Smith, founded really wasn’t used nearly as much as 10 years ago. We Very Special Arts, “to create a society where all people rely on it extensively for education and training purpos- with disabilities learn through, participate in and enjoy es now with our distance learning programs, and in our the arts.”) most recent initiative to connect doctors around clinical consultation. Cooper: How did you get involved with iCons? This helps doctors in remote and/or medically under- Smith: I have a cousin who lost a leg to osteosarcoma served areas, such as post-conflict areas, where people when he was fairly young. After completing my resi- tend to have poor access to specialty care. This could dency at Northwestern— I’m a physiatrist by training— also be physicians on the Indian reservations in the U.S., I then trained as a prosthetist. After medical school, I or in inner-city areas that are underserved. So we’re try- spent time overseas with the International Medical ing to connect many of the physicians. Corps in Somalia, where I got a lot of exposure to peo- ple with land mine injuries. I became interested in Partner organizations such as the National Arab Ameri- amputee care and looked into it. can Medical Association, the Iraqi Medical Science Association and the Chicago Medical Society are band- In 1996, I started Physicians Against Land Mines. Later, ing together to create a volunteer international work- Princess Diana got involved and the issue picked up a force to help local physicians in Iraq, the Middle East lot of momentum for a while. We started the Center for and other countries deal with the huge humanitarian International Rehabilitation in Chicago to work on crises they face. mobility aids for those with land mine injuries, and other people with disabilities in conflict and post-con- Cooper: You’ve done a lot. flict areas. Then, in ‘98, we started the first distance learning course on prosthetics in Latin America, work- Smith: I’ll mention just briefly the other big initiative ing with clinics that served those wounded in war. Later, that we’ve worked on: The Convention on Disability we expanded that program to the Balkans. Rights, which the United Nations recently passed into international law. Dr. Thomas Chappell: You’ve also worked with Iraqi physicians? Cooper: It was actually your organization that was key in helping put together some of the Non-Governmental

34 ABILITY Organization (NGO) meetings. I attended a few of them. the case comes out of the inbox. You then engage in one-on-one dialogue with the requesting person. That Smith: We were on the steering committee for the Inter- dialogue, which is encrypted to ensure maximum patient national Disability Caucus (IDC). We also pulled confidentiality, can continue as long as the two sides together the International Disability Rights Monitor, want. At the end, the case is closed. once again using the internet to help us. The monitor involves a research network of about 55 countries in We started with doctors, but intend to expand it to other Latin America, Asia and Europe, where we produce health-related professions. We want to create a commu- regional reports on disability rights. We give micro- nity of practice, as well as foster dialogue amongst grants to a country’s researchers to produce the reports, interested professionals. We’ve been doing this as an and we train them how to write the reports. NGO for years, whether it’s been in the land mine area or the disability area, working with ad hoc networks or That’s all been under the UN standard rules for the connecting peer to peer. equalization of opportunity for people with disabilities. As you know, that has now been eclipsed by the Con- Chappell: How does the website work? vention, which has the force of international law. So we’re in the process of updating our shadow monitoring Smith: You go to the site and sign up as a general mem- and research methodology to reflect the protocols of the ber. If you want to become a volunteer or a requester, Convention. you’ll see the links. Click on those, fill out the necessary paperwork. It’s not a heavy lift. Chappell: I’m interested in being a part of your Internet physicians’ bank. Chappell: Are there instructions about starting a chap- ter as well? Cooper: Dr. Chappell is a neurosurgeon. Smith: Yes. People can start chapters with any mission. Smith: Let me give you an overview of how the pro- They can say, “We want to focus on a particular area of gram is organized, which may provide the information medicine.” Or, “we want to focus on a geographical you need. In one scenario, a nonprofit organization that area.” They have total freedom to do that. Their profiles employs physicians becomes a member organization. and the profile of their chapter are displayed on the site, Their physicians are authorized to practice medicine so everyone can see who they are and what they’re where they work, and they service a remote or under- interested in. served population. In addition to those in the service area or underserved population, any staff of the member Cooper: Have you looked into the digital divide in these organization can request assistance through the iCons remote portions of the countries you’re working in? program. Smith: We’ve been dealing with those issues for the last In another scenario, any three physicians can form a decade or so. The New York Times technology section chapter and apply. They must be licensed to practice in did a piece on our original distance-learning program the specialty that they represent, and be willing to pro- back in ‘97 or ‘98. About 50 percent of our initial class vide three consults a year. Once you sign up with a chap- had never used a computer before. At that point, a lot of ter, you post your profile and get consult requests via people said, “You can’t do this on the internet; it doesn’t email. Those requests contain a link. If you click on it, exist in these places. People aren’t going to have the and decide you have the expertise to provide assistance, skill set...” Interestingly, at Northwestern University, my

(l) Smith at a wheelchair clinic in Afghanistan; (c) with students in Bosnia; (r) holding a prosthetic ABILITY 35 alma mater, the prosthetics school is now handled quite a range of specialties, anything from orthopedics entirely via distance learning. I’d like to think our expe- to ophthalmology. rience had something to do with that. I would love to see people post profiles of practice envi- We’ve had success with the teacher/student/site-facilita- ronments, characterize where their own expertise is most tor triad. We found that if we worked with clinics direct- useful and list repositories of equipment. All of these can ly, and the site facilitator was invested in seeing this become components of the program as a user base educational program work, they would make sure stu- grows, and as the base expands, its real power emerges. dents had access to the internet. We found that many students actually used internet cafes and other means of Cooper: How will it be funded? access as well. Smith: It’s remarkably inexpensive. We’re currently The growth of the infrastructure itself has been phenom- funding it through grants and contracts we have with the enal. Most of the clinics are using email as an important Telemedicine Advanced Technology Research Center means of communication. To that end, our software was out of Fort Detrick, MD. We’re also talking to internet designed to function at about the same bandwidth as technology companies, health providers and founda- standard dial-up (28k) email access. Remote requesters tions. We hope national organizations within a country don’t have to have broadband internet; they can have will be licensed to raise money independently, which intermittent dial-up. To make a request, you click a but- can be used on the spot. We’re about to establish nation- ton and it sends the request when it can get appropriate al organizations in Bosnia, Jordan, Afghanistan and internet service. beyond. Surveys have been conducted in other Middle Eastern countries to identify groups that could take on Chappell: How much impact do you think that we can the role of national organizations. have as consultants? I’ve done informal internet con- sulting in recent years. With my particular specializa- Chappell: I’m intrigued by this and by the prospect of tion, I’m likely to recommend treatment that they’re sim- becoming a consultant. Maybe I’ll even start a chapter. ply not going to be able to get. I’ve had friends who I’m anxious to see how networking can be effective in have actually gone places and built programs, helping terms of the intangibles you alluded to earlier. out physically. They often bring older equipment that has been donated by hospitals, which have recently Smith: There’s definitely a learning curve. I think of it upgraded to newer equipment. Sometimes these can be as being similar to a conference, in the sense that folks high-level instruments such as CAT scanners. But often, who are presenting are obviously central. Then there’s in my specialty, volunteer physicians have to go back to the next ring of people who get up, ask questions and methods used 20, 30, 40 years ago, for example, engage the speakers. Beyond that is a row of people because they simply don’t have the latest tools. So if I who come to conferences fairly regularly, but don’t can’t even be there to help them, even using older tools, speak up and engage. A row further back, you’ll find how much impact could I have? people who wandered in, maybe this is their first confer- ence. Your goal then becomes to move the outer groups Smith: That’s an important observation. It’s interesting closer in, one ring at a time. People have to get comfort- to watch the paradigm shift from traditional telemedi- able and familiar with the environment. As the inner cir- cine, with point-to-point connections between a hospital cles begin to engage each other, the chance of success here and a hospital there, to broadband with synchro- greatly improves. nous satellite-based streaming video and audio. Yet the connections with the most resonance still seem to be iconsinmed.org regional or local: The guy in rural Ethiopia who’s look- army.mil ing for a solution to a problem may find a consultant in shaffallahcenter.org Addis Ababa, not Chicago. As you mentioned, there are cultural, geographic and economic issues, as well as Smith with students at Don Bosco University in El Salvador other factors that will be better understood by people in similar environments dealing with similar concerns.

Sometimes people just don’t know the resources that are available to them. In Nicaragua, for example, we found that there were people who were unaware of clinics that were within a 100-mile radius, and that dealt with the exact problems they had. If you’re in the Army, let’s say, you can email them about a kidney concern, and any one of a dozen renal specialists will respond. This kind of network is being expanded to NATO, and is proving to be the most durable form of telemedicine for

36 ABILITY ABILITY 37 38 ABILITY 39 ABILITY ABILITY 39 40 ABILITY ook familiar? He should. Robert Patrick’s roles sense of brotherhood, duty and honor—values they include Col. Tom Ryan in The Unit, John Doggett brought back with them from the war. I’m sure they just Lin The Ex-Files and the T-1000 in Terminator 2: had a lot of adrenalin and steam to blow off as they Judgment Day. When he’s not in front of the camera, came to grips with returning home and getting back into he’s often on his motorcycle, zooming around the coun- society. So they formed these motorcycle clubs, and try as a part of the Boozefighters, a nonprofit organiza- Boozefighters is one of many formed at the time. But tion that raises money to help vets, children and the Boozefighters is historic, one of the earliest ones, orga- poor. Recently Patrick traveled to Iraq to offer encour- nized around the same time as the Gallopin’ Gooses, the agement to our troops. Here the actor talks to ABILITY Top Hatters and the 13 Rebels. Magazine about those adventures, as well as what hap- pens when he gets pulled over by the cops, why he The Boozefighters started in Los Angeles in 1947, two stopped drinking and how he chose acting: years before the Hell’s Angels. One Fourth of July at the AMA Pro Races, one of our founders actually drove I became an actor because it was the only thing I was into one of the races that was in progress and rode over interested in. When I went deep into my soul and asked a fence, causing havoc. Then club members basically myself what is it that I wanted to do with my life, acting took over the main street of the town, Hollister, CA, and was the answer I got. I like playing other people. That’s raised a little hell. When Life magazine covered the my calling. So I sat in on a few drama classes in college, event, they staged a couple photographs of drunken did a few plays in school, and drove to Hollywood and vets, home from the war, terrorizing the common folks. basically said, “I’m an actor. Now what do I have to do? They played up the drama, creating this image of the How do I get started?” outlaw biker who was gonna come and terrorize your town, so lock up your women and all that kind of stuff. I’ve done a lot of movies, but the biggest one was Ter- minator 2: Judgment Day, playing the T1000, opposite The Gallopin’ Gooses were there, the Boozefighters Schwarzenegger’s character. He’s about my size. I’m 6 were there, the Top Hatters, and a lot of these older feet, 208 pounds. I think he’s about 6 foot 1. When we clubs. They were all pretty much the same, all formed were making the movie he was about 195 pounds. I just by guys coming home from the war. But the Boozefight- saw Arnold recently at the funeral of his dear friend, ers got connected to the myth more so than the others. Stan Weston, who created the look of The Terminator and all the make-up special effects for Jurassic Park. It MOTORCYCLES TO MOVIES was great to see Arnold, but sad to see him under those circumstances. That incident in Hollister (near Monterey), later became the inspiration for the movie The Wild One, made in I was 30 years old when we made The Terminator in 1953 with Marlon Brando. The producers recruited our 1990. I’ve had huge life experiences since I made that leader, “Wino” Willie Forkner, to be a technical advisor. movie, which is locked in time. I look at it and go, “Oh, I think the big thing that he’s credited for is coming up my God, look how young and skinny I was!” I was skin- with the name Black Rebel motorcycle club. He took ny because I was broke. I was also on drugs at the time, the 13 and combined the 1 and the 3 to make a “B” and and I drank. I actually had a serious drug and alcohol created the Black Rebel motorcycle club, a fictional problem. club in the movie, which was the one that belonged to Brando’s character. The other club leader in the film I no longer drink or take drugs and I’ve been sober for was Lee Marvin, who actually followed Wino around 11 years. A big part of my life now is riding motorcy- and based his portrayal on him. cles. I belong to a motorcycle club called the Booze- fighters. Steve O is the vice president of Chapter 101, The interesting thing was that Lee Marvin was actually and I am the president. There’s a great story about how a returning vet himself. He was a Marine who served in this club came about: It was established in 1946 by vet- Iwo Jima, and really understood what was going on in erans who came back from World War II. Many of them those guys’ heads. His motorcycle club was called the had Post Traumatic Stress Disorder, as we call it today, Beetles. and didn’t feel like they fit in with normal society. So the movie comes out and over in Liverpool there are Boozefighter is a name for somebody who’s trying to four guys who have a little band. The movie makes a conquer his habit of drinking. They got the name big impression on them, and they actually liked the because they drank and they fought, and somebody in a name the Beetles and decided to change the name of bar said, “You know, you guys should call your club the their band. So the Beatles got their name, more or less, Boozefighters, because all you do is drink and fight.” from an American motorcycle club. And they decided to call it that. I go off to make a movie in New Zealand called Bridge They liked to ride their motorcycles and raise hell. It to Terabithia. While I’m down there, I get a call from was all fairly innocent: Have a good time, continue the Steve O and another guy saying, “Hey, we want to do

ABILITY 41 this cross-country trip around America at such-and-such pulled over for speeding in Yellowstone. The cop starts a time.” I say, “OK, cool.” When I get back, I do We Are talking to us and I pull my helmet off and, fortunately Marshall, and then we put this trip together and rode for us, he recognizes me. So, he let’s us go. across America. When I get pulled over, police often say, “Hey, I didn’t I had read the book about the Boozefighters, The Origi- know it was you.” That kind of thing. “Of course you nal Wild Ones: The Boozefighters, written by Bill didn’t, I was wearing a full-face helmet. Like you could Hayes, and they seemed like great guys. The book got see through it?” But I say, “Yeah, man, it’s me. How me wondering about what happened to them. Well, as you doin’?” Some say, “Oh, well, I’m sorry.” I’m think- we’re making our way back across America, we get ing, What? You’re sorry for doing your job? We were speeding. I don’t blame you. Then they say, “I’m going to let you go,” and I think: OK, I appreciate that. That’s one of the perks.

At the same time, if you wear the patch and you belong in a club, police treat those persons a bit dif- ferently when they pull them over. They think you’re up to no good. It’s not fair, that sort of discrimina- tion against motorcyclists and motorcycle clubs. We’re not up to no good, we just happen to be brothers and want to ride together. We take care of each other. We don’t want to do anybody any harm. We don’t want to cause any trouble or anything like that.

In Yellowstone, after the police rec- ognized me and let us go, I said to the dudes, “Hey, while we’re here, why don’t we go grab something to eat?” We go in and we’re eating in this diner, and in walks a Booze- fighter. I’d never seen one in my life. The guy was 6 foot 4, about 270 pounds. Huge white beard, white hair, looked like frickin’ Santa Claus on steroids. I just went like, “Jesus Christ, that guy’s got to be one of the original Boozefighters.” He sat down across the counter from us. He looked at me and I looked at him, and I said, “I know who you are,” and he said, “I know who you are.” We started talking, and I said, “You’ve got to be one of the original Boozefighters.” He said, “Nah, I’m not that old.” A JOURNEY BEGINS

So we kept talking. We’re telling road stories. He was out camping, riding around America. I asked him, “How come I’ve never seen a Patrick leads various bike rides Boozefighter in Los Angeles? to benefit a number of charities. That’s where it started back in ‘46.”

42 ABILITY The ABILITY House program, working with, ABILITY Magazine and home building organizations 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

He said, “Well, that’s a long story, but are you interest- As an actor, I have a certain profile. I’ve been fortunate ed?” I said to him, “I actually think I could be a Booze- to have done the Love Ride as honorary grand marshal fighter. I’d like to do that. How do I do it?” with Jay Leno for 18 years. But the community of bik- ers and motorcycle clubs has given me more of an That sent me on my journey. I spent the next year opportunity to really get out there, participate and help. prospecting and riding around, getting to know people, introducing myself to the motorcycle community and I just came back from Baghdad, where I took my club the power clubs. I heard there’s something like 300 patches—the colors I wear on my back. When I wore clubs in Los Angeles. It’s been a fascinating experience those, a lot of guys came up to me and talked to me for me, because I was never in the military.The sense of about the Boozefighters. Some guys knew who we brotherhood, honor and duty that I have gotten from it were, some guys were in other clubs. It’s a big, cool and the fact that I know I’ve got brothers backing me up brotherhood. is a neat feeling. And they’re all over the country. It’s an international motorcycle club, and I really had no idea. There are steps to becoming a full patch-holder. I’d never been a part of something like this. You’ve got to prove to yourself and the brothers that you’re worthy of being called a brother. It’s very We’ve turned our chapter into a nonprofit organization much like the military in that sense. You’re given dif- and we’re out there visibly trying to do good deeds in ferent challenges at different stages. It’s private the community to let people know that although we may between each and every club and you have to earn it. ride around on loud machines and wear a three-piece I’ll be going back to Iraq soon. patch, we want to be a positive part of the community as well. We raise money and distribute it to disabled vets, In May, I brought members of the Boozefighters on a participate in Blaze of Glory. We’ve done Children’s Poker Run ride to raise money for the Orange County Hospital runs, Skid Row toy runs, Foundations for Fam- Habitat for Humanity’s Homes for Heroes project. From ilies, Homes for Heroes, and other important charitable, there, I left and rode on to the Vietnam War Memorial in community events. Washington DC. The Memorial Day ride is called “Run

ABILITY 43 for the Wall,” and we all go down and pay trib- His role on the TV series, ute to the Vietnam vets, the memorial itself The Unit, is one of many and the country. The ride gives you a great military roles Robert opportunity to pay your respects to everybody Patrick has played. in the military and let them know how much Insert below: They raise they mean to you. more money than hell, and boy do they get around. The other cool thing I did in to DC was go to Walter Reed, which blew my mind. It was one of the hardest things I’ve ever done, and yet one of the most rewarding, to meet young men and women who have been disabled either by losing a limb, losing part of their mental capa- bilities, their hearing, their sight. It was just unbelievable, the sacrifice that these young- sters made to our country to protect our free- doms. I just admire the hell out of them.

My grandfather, Robert Samuel Patrick, was a lieutenant colonel who fought in World Wars I and II and in Korea. He was still active in Viet- nam. He was a Bronze Star winner. He died at Fort Bragg, NC, from stomach cancer and is buried in a military cemetery in Virginia.

I knew him up until I was five. One of the ear- liest memories I have is of being in Fort Bragg with him. That’s where the military connec- tion is. Plus, I’m also playing a colonel in the U.S. Army on CBS’s The Unit. We’re filming right now.

I left from that ride with my good friend New York Mike, a Vietnam vet who owns a San Diego Harley dealership. He invited me to ride with him. We were joined by a third per- son, Ugly Rusty of the Ugly Motorcycle Club. Willie G. Davidson, grandson of the one of the original founders of Harley David- son is a member of the Ugly Motorcycle Club. So Rusty, Mike and I left and rode all the way to Flagstaff, AZ, together.

On most bike rides I can go around 100 miles, after that I start looking for a gas station. I get off to stretch my legs, drink a Red Bull or have a coffee or something to eat, take a whiz. After filling up, I head back out for another 100-mile stretch.

Our guys are all about trying to figure out how to raise money for disabled vets and how to bring recognition to them. I’ve talked to the City of Los Angeles about putting on a memo- rial concert to get people to make donations for these wounded warriors. I’m going to do the Habitat ride next year as well. We’re going to try to make it bigger and better.

habitatoc.org

44 ABILITY ABILITY 45 LD SCHOOL: People with disabilities are insti- asked me to be the next assistant secretary of labor for tutionalized and written off. NEW SCHOOL: disability employment policy.” She gets real quiet, and OPeople with disabilities are recognized as whispers, “Neil, does he know that you can’t spell?” untapped talent and hired by forward-thinking employ- Which to me was hysterical. It said everything that I ers. In this, Part I of a two part interview, Assistant was trying to illustrate, and everything that I’m about. Labor Secretary Neil Romano talks to ABILITY Maga- People have tended historically to look at disability as zine about the coming revolution in the American work- the opposite of ability. We focus so much on what peo- force: ple can’t do that we don’t focus on what they can do. Now we’re going after businesses and saying, “You People with disabilities are the next great wave of diver- know what? Actually, this group can do a great deal.” sity in the United States, and they are about to move for- So we’ve started to turn the corner on that, and we’re ward. The Office of Disability Employment Policy working very hard. (ODEP) has been talking about that, and I think it’s starting to get some traction. Companies are beginning Things have changed dramatically in the last 20 years. to realize that people with disabilities have a lot to offer, People with disabilities are now better educated, and and it’s time that they take a good, long look at how to expect more from their educations. They’re saying, “We hire them, which makes perfect sense to me. want to work more.” America is at a very good point in history, because companies need more skilled workers I never assign malevolence to anything that I’ve seen and people with disabilities now have better education, that’s been wrong in the arena of disability. I think better preparedness and higher expectations. These fac- sometimes that people try to build this hedge of protec- tors converging are good for people with disabilities and tion around people who have disabilities, and some- good for the country. times it can be so tall that it becomes a form of impris- onment. Perhaps they just don’t believe in people with Technology is part of it: It gives us the opportunity to disabilities. have computers and systems that can level the playing field. I tell people all the time that I owned a company Sometimes that hits close to home. Here I am, 54 years where, for years, I had people do my typing because of old, and when I get the call from the White House that I’m my dyslexia. I had people read and answer my email for going to be nominated for this job, I phone my 84-year- me, because my greatest fear was that I would be per- old mother in Brooklyn and say, “Mom, the President has ceived as someone who wasn’t smart. My life changed

46 ABILITY the day that I discovered spell check. When I sold my business and started working independently, I could sit and write without fear of how people would perceive my written business materials.

At the time, I did cause-oriented marketing for both companies and government. The assignments were health-care related. I’d always had a tremendous desire to get into the whole issue of employment for people with disabilities. It was partly because, for many years, I never got a job that I applied for. If I went out for a PR position 25 or 30 years ago, the first thing they would do is sit me down in front of an IBM Selectric type- writer and say, “Take this test.” When you have dyslex- ia, that’s probably the scariest thing, second only to being asked to read in public. So there I was, passionate about public relations and marketing, but incapable of taking the test that I needed to get into the field. FROM DYSLEXIC TO ENTREPRENEUR

So essentially what happened is that I spent the better part of my life either getting jobs that I was recommend- ed for, or jobs that I didn’t have to take a test for. Final- ly, I got into marketing and public relations by starting my own company. A lot of people with dyslexia in America become entrepreneurs for that very same rea- son. We can do things; we just have to figure out how to make up for the things we can’t do. Generally, how we do that is we start a business and hire other people to do those things.

I had a meeting with a CEO of a major corporation about a year ago. I went up to this guy’s company, and he rolled out the red carpet for me. He put out a little “Welcome Neil Romano” sign in the front of the lobby and invited lots of people. When I got back home, I wrote an email to this guy, which I thought ended with “Thank you for the warm reception.” I get an email back almost immediately that says, “Worm?” to which I responded, “Yes, worm!” I had no idea what was going on, until my wife read my email and says, “You thanked the gentleman for a worm reception!” (laughs) So I then had to write him a note and say, “Sorry, my spell check didn’t catch that one!”

I remember sitting in the New York City public library for days, sending out hundreds of resumes, finding out that I had made thousands of spelling errors on them, and not getting the job. It’s the kind of thing that can make you beat yourself up. But I got an invaluable les- son from my daughter, who is 16 now, and wanted to bring home a friend. I think she was only eight or nine at the time. So we said, “Sure, bring your friend home.” She had been talking about this girl for some time. They played outside, they played on the monkey bars, they ate together. Finally this child comes over for a visit, and she has cerebral palsy, rather serious CP. When the little girl left, I turned to my daughter at dinner and casually said, “You didn’t mention that she has CP.”

ABILITY 47 work next to Bob, I think, Why shouldn’t there be curb cuts? He’s got to get to work. I want him there to help me get the work done. And then after work, he needs to get home to his family without encountering obstacles.

A CEO said to me recently, “Before I started hiring peo- ple with disabilities, I’d see someone on the bus who was visually impaired or someone with CP and think, Poor guy, poor gal. Bad hand, bad deal. Now I see a person with a disability and all I think is, Gee, I wonder where that person works? I wonder what kind of job they have? It dawned on him that his view had changed because he saw people working. And you see the poten- tial for events to cascade from that. I mean, if a person can work and wants to work, then that person should be educated properly and have adequate transportation— the same transportation that I get. That person should have the same opportunity for housing. All those things suddenly become obvious. ‘WHAT DO YOU DO?’

For instance, if I go to the school board meeting and we’re talking about more money for special education classes, and I have a guy who’s working with me, and I know that special ed would help people like him get a job, suddenly that’s not something that I consider Assistant Labor Secretary Neil Romano unnecessary any more. His education is as important as anybody else’s. But if I’m walking around oblivious, And my daughter looked at me as if to say, Why should and I don’t believe that people with disabilities can I mention that? I couldn’t help but think, Boy, is that the work, then I don’t understand why they need anything. right attitude. I felt something burn right through my That’s why I focus so hard on work and work prepared- soul at that moment. ness. Because in America the second thing that we ask each other, after our names, is ‘What do you do?’ I just related that story again recently, and when the per- son wanted to write about it, I suggested they talk to my Work is essential to the fabric of a human being. It gives daughter, but she absolutely did not want to expose her us the opportunity to feel a sense of purpose, to take friend to that at all. She said, “I don’t even want to have care of ourselves, to take care of loved ones. It gives us that conversation, Dad.” They’re still best friends today. the opportunity for independence. Finding work is It’s just one of those things. The experience is terribly essential to the healing process; in a lot of cases, it helps powerful for me about how kids think as children, and people get stronger. You find that people with disabili- how that often changes when they get to be adults. ties who work tend to get a little bit better.

When you see a person with a disability standing next to I have a brother who is a Vietnam veteran and a quadri- you, doing the same job that you’re doing, that person plegic. He has a wonderful wife and a great family. He suddenly doesn’t seem disabled. They’re just the person says to me all the time, “Neil, I have no regrets about next to you doing the work. I did a survey with my my life. I have no regrets about my service. But I will foundation a number of years ago, which showed that tell you, I wish I had a job. I wish I felt productive.” He somewhere near 80 percent of everyone who’s ever says the worst days are when he’s in a room and hears worked with a person with a disability, said they per- everybody introducing each other, and they ask your formed as well or better than anyone else. name and then they say, ‘What do you do?’ “No one ever asks me what I do,” my brother says. “They make Then there’s the whole issue of people saying that peo- an assumption that I don’t do anything, because I have a ple with disabilities on the job no longer have a disabili- disability.” That’s the most painful thing he goes ty. But if Bob is blind and is accommodated at work, through. He’s one of those people who’s struggled to get and then he can’t use public transportation on the way work throughout his whole life. home, he suddenly becomes blind again. If he’s in a wheelchair and there’s no curb cut, then he is at a disad- You feel good about yourself when you feel good about vantage and has a disability. That’s why I always say your work. The way we show love is by being able to that work is the engine of social change, because if I do for others. You can say you love someone, but not

48 ABILITY until you do for them does it register. When I bring my Department of Health and Human Services and the Vet- wife flowers, do something nice for her, contribute to erans Administration. her as a human being, she knows how I really feel about her. It’s taking it a step past emotional love; work does The website can help you retain a great employee who that for us. It gives us the opportunity to be part of may be going through a difficult time. Within a year to something bigger than ourselves. It takes us out of our- 13 months, you will have an eight in 10 chance that that selves, commits us to others, as well as to bigger ideals. employee’s situation will be better. Once again, going What else is there, really? back to my own brother’s time, when these fellows came back from Vietnam, we didn’t know what was NEW PROGRAM FOR PTSD wrong with some of them. My brother had scads of jobs in his first year, he just couldn’t hold them. Now we We recently announced a program out of ODEP called know much more about PTSD, and its symptoms: losing America’s Heroes at Work. We’re very, very excited one’s balance, headaches, problems with loud noises. about it. The program addresses Post-Traumatic Stress Disorder and traumatic brain injury for veterans return- If employers knew that back then, and there was a ing home. About one in five veterans returning home is source of information comparable to this website, my going to have one of these issues. That’s somewhere brother probably would have been able to maintain a around 200,000 men and women. Fortunately, about 80 job. He later had other things that eventually affected percent of those injuries can be reasonably mitigated in his health, but there would have been a period of time a short period of time, if employers know about it, and when he was physically able to have worked for while, if they understand the problems and symptoms. though I think he is still may be able.

So we have developed what I consider to be an excellent One thing that I’m most pleased about in having the website that helps employers understand what the prob- opportunity to work on this with ODEP and vets, is that lems are, how to address them, and simple things that we’re addressing an area that a lot of people are afraid could be done to alleviate them. It’s a great program to take on. Any time you go into anything dealing with because we got as much good information on this as we the mind, it’s more difficult for people to understand. could by working in conjunction with the Veteran’s There’s fear and concern, even though there shouldn’t Training Administration, the Department of Labor, the be, because those are things that can be taken care of.

ABILITY 49

This program obviously relates to veterans, but there are for that, that could be considered an accommodation. employers and employees such as first responders— But if my job is to make sure that everyone is given an police, fire, EMS—who grapple with PTSD every day. I opportunity to do their best, that’s not an accommoda- can’t tell you how many people have come up to me tion. And if I have to lift up an employee’s desk, from those communities and said, “We’re so glad some- change the light bulbs, or otherwise make the office body has stepped up and talked about this issue.” accessible, that is nothing more than productivity Because when you have a firefighter or a policeman enhancement. So from my point of view, a good busi- who sees something really tragic, trust me, they have nessman is going to give you the tools and the environ- these problems. They may be overlooked, but this web- ment to do your job. site gives them a resource. We’ve already reached out to some of those organizations, and they’re very excited America has grown every time we’ve allowed another about this resource. diverse group to be fully incorporated into society. It seems like every couple of generations or so we man- DON’T CALL IT ACCOMMODATION age to let in another group of marginalized Ameri- cans. My goodness, what takes us so long? At a recent If you have dyslexia like I do, you know that fluorescent conference, I said to attendees: “When you think of lights are not your friend. I can see them flash. People how you would incorporate people with disabilities, I with PTSD and some forms of traumatic brain disorder want you to stop for a moment and remove all the have the same problem. It makes them incapable of con- people from your office who, at one time or another, centrating. We know that you can turn the fluorescents were considered, ‘unhireable.’ Start with women, off, put in some incandescent lighting, and get rid of a move on to African Americans, don’t forget the turn lot of that right off the bat. If you have a person who has of the century when all those Italians and Irish came, PTSD and they’re having a problem concentrating, put and we told them not to apply. And then let’s move them in an area of the office that’s a little quieter. This onto Hispanics... After you take all those people away, doesn’t require a big fix. you know what you’ll have? An empty office. Where would we be without those Americans today? From I have to tell you, though, I don’t like the word accom- my point of view, people with disabilities are that next modation. It sounds like doing someone a favor. If great wave. someone walks into my office who doesn’t have a quote “disability” and says, “You know, I don’t use a Mac. I dol.gov/odep use a PC,” and I have to get him a PC and pay $3,000 americasheroesatwork.gov

ABILITY 51 ctress Meredith Eaton has been in a number of her grandmother, Nina Eaton, helped to found in in the shows with roots in the law: She started out on 1940’s after her son—Meredith’s father—was born with AFamily Law, and recently has been featured on the condition. Today, UCP affiliates serve more than Boston Legal. But her professional roots are in psychol- 170,000 children and adults with disabilities, and their ogy, where she worked as a therapist for many years. families, every day. Here Eaton talks with ABILITY Some of those were with United Cerebral Palsy, which Magazine about the unique path her life has taken so far.

52 ABILITY ABILITY Magazine: Your background is in clinical to childhood. Whereas psychology is much more here- psychology. and-now oriented. You focus on a problem you can fix in 12 sessions. As opposed to psychoanalysis, which can Eaton: I worked for many, many years in the field, go on for years and years. often with people with physical disabilities. That was in New York when I was a therapist for United Cerebral AM: So the psychoanalysis goes back to the date of Palsy. I was always interested in working with people birth, where psychologists go back to last Tuesday? with disabilities, and in high school I worked with peo- ple who had Down syndrome. That was for an agency Eaton: Exactly. Literally, what brings you here? Let’s called AHRC, Association for the Help of Retarded troubleshoot how we can fix it. And it’s much more Children. Then I went to college, and throughout col- contained. The sessions are pretty much spelled out by lege I volunteered for AHRC. After that, I was hired to the insurance company. work at United Cerebral Palsy as a program administra- tor and I did some therapy. AM: As a psychologist you had something of a safety net. But as an actor you don’t. How do you feel about When I moved to California, I got my first series, which that? is what brought me here. Paul Haggis, who’s now a big movie guy, cast me as a lawyer in Family Law. When Eaton: My first and foremost love is acting, so I’m that series ended, I thought that I would be going on excited about the possibilities of where my career is more auditions and booking more jobs, but everything going to take me. I’m realistic about the limitations that just came to a screeching halt. So I had to figure out a I continue to face because of my (short) stature, and way to make money, and I went back to my roots as a because of a lack of willingness to explore non-tradi- therapist in a locked psychiatric unit, working with peo- tional casting. But for now, I want to focus on acting. ple who were criminally insane. I did that for a year- and-a-half, and I had to leave, because it just was not AM: Your stature has grown on Boston Legal? safe. I had been assaulted several times, and I said, “I can’t do this any more.” Eaton: My stature? I’m not any taller, if that’s what you mean! (laughs) Do you mean my notoriety has grown? I did a little bit of acting—some guest spots here and there. I got a job working as a therapist doing individual AM: (laughs) Yes. and group crisis intervention and family therapy. I did that for two years. I left to do Boston Legal. So my psy- Eaton: Oh, OK. (laughs) Yes, it definitely has because chology career has been interwoven into my acting the show is so popular, and everywhere that I go, people career, and it’s my safety net and fallback. But again, respond to me and acknowledge my work. It’s wonder- it’s not where my heart is. I was dealing with every type ful. So certainly, publicly, I’ve definitely seen a differ- of mental illness: depression, bipolar disorder, schizo- ence. But still, industrywise, not that much has changed. phrenia, schizo-affective disorder--you name it. I was My activity level, in terms of getting interviews, has not exposed to every type of mental illness. I was trained to really changed. do that. Although I haven’t been practicing for about three years now, so I can focus on acting. AM: What’s going on with Boston Legal?

AM: What’s the difference between a psychoanalyst and Eaton: This is our fifth and last season. I’m in the pre- a psychologist? miere episode in September

Eaton: My mom is a psychoanalyst. They have a dif- AM: Tell me more about your connection with UCP ferent school of thought. A lot of psychoanalysts prac- (United Cerebral Palsy) tice classical psychoanalysis. They follow a Freudian model. It’s a much more strict, regimented therapy, Eaton: My grandmother, Nina Eaton, founded United where you see the patient three times a week. It’s very Cerebral Palsy. At the time that my father was born free-flowing, analytic thoughts. A psychologist, on the with it, there were no resources for people with the other hand, problem solves and helps you to get through condition. So my grandmother and grandfather, who a certain crisis in your life, which is quicker. lived in Brooklyn, tried to reach out for some type of resource or support, and people just told them to insti- AM: So when someone says they’re a psychologist, they tutionalize my father. There was no help, no hope. But don’t typically do psychoanalysis? my grandmother, who’s very headstrong and assertive, didn’t like that answer, so she founded the organization Eaton: You could, but it’s very hard to do psychoanaly- that would become UCP in the basement of a firehouse sis in this day and age, because insurance companies in Brooklyn. won’t pay for it; they consider it a luxury. You’re really getting to the primary root of all problems. You go back AM: Did the firehouse know she was down there?

ABILITY 53 Eaton: (laughs) Yes, they did. It started as a parent-sup- was where he’d put all his energy. As a little boy he’d port group. And then it evolved into what it is today. go to baseball games and follow sports. My grandmoth- She has many, many, many buildings and structures er was very consumed with UCP, and I think my dad named after her. She’s still alive. In fact, she recently wanted to identify with other things besides his cerebral had her 93rd birthday, and I went to New York to cele- palsy, so he developed other hobbies. brate with her. AM: Did he participate in sports as well? AM: Oh, wow, how cool is that! How is she doing? Eaton: Though he couldn’t play, he would coach. That’s Eaton: She’s had some cardiac issues this year, but she’s the closest he could get to the game. In fact, my dad’s as sharp as a tack. I just hope I inherit her genes. really something. His favorite song, which he’s instruct- ed me to play at his funeral, is “Put me in, Coach!” He AM: She had a shark attack? made me promise.

Eaton: (laughs) You’re a comedian—or at least you try AM: (laughs) to be. She’s had some cardiac issues, so this year she’s taken a step back. At 93, though, she’s still functioning. Eaton: When he hears that song and he just hops up and She’s doing better than a lot of people her age. I’m down in his wheelchair. He loves that. He was just talk- happy that she’s OK. But what is even more remarkable ing to me about his love of sports, and how he was real- about her story is that her son, my father, the one people ly sad to hear that his college roommate just passed told my grandmother to institutionalize, not only retired away. He went to Adelphi University on Long Island. as a governor-appointed administrative law judge, but His roommate was an African-American basketball he’s probably the most brilliant man I know. The poetic player. One night, the two of them broke into the gym. It justice of it all is that my father went on to thrive. I’m was pitch black, and the roommate put the lights on, very proud of both my parents, especially when you took my dad out of his wheelchair and lifted him up so think about the lack of knowledge about people with that he could dunk a basketball. It was one of the best disabilities back then and how quickly they turned to moments of my father’s life. My dad will come back as just pushing them into institutions. a basketball or baseball player.

AM: What CP symptoms does your father have? AM: I thought you were going to say as a basketball.

Eaton: It’s orthopedic. His whole life he walked with Eaton: No. (laughs) Definitely as some kind of sports forearm crutches, and then eventually he stopped walk- player. ing. It just became too hard for him. He doesn’t have much use of his left hand, but his speech is totally AM: When you were at UCP, did people know it intact. He doesn’t have any speech impairment or cogni- wouldn’t have existed if your grandmother hadn’t been tive deficiencies. proactive?

AM: Was he right-handed to begin with? Eaton: Of course the support staff all knew; however when I applied for a job, I applied just like everybody Eaton: Yeah. else. I sent my resume into the main office. I didn’t have my grandmother make any phone calls. Obviously, they AM: What does your father think about the work you’re probably knew who I was from my last name. Eaton has doing? carried a huge impact in the area of cerebral palsy and people with physical challenges, but the people I was Eaton: The first recurring role I ever had on TV was on helping didn’t know. To them it didn’t matter. Family Law. I played a lawyer. He was thrilled. I would show clips to him, and the judge in him would say, AM: ABILITY has a partnership with UCP. “That’s not correct.” He would be very technical. He’d almost be like a technical advisor. And he’d get frustrat- Eaton: Really! ed, because he’s a huge law-show fan. He watches every law show on television, and so he was really thrilled. AM: If you go to their website, you’ll see their Then when I was cast on Boston Legal, it was even announcement. more exciting. He’s also a big fan of that show. Eaton: If you go to the UCP national conference, they AM: Did your father ever work with UCP? have the Nina Eaton Awards, they have the Founder Award, an award presented in her name. If you’ve ever Eaton: No. But when he was a little boy, he was the first been to a national conference and my grandmother is “poster child” for UCP. My dad’s a huge sports fanatic; there, she chairs the awards show. The reverence she he had a baseball signed by Jackie Robinson, and that receives is just—you cannot even open her hotel room

54 ABILITY door without being flooded with flowers. She’s an worked in the lockdown facility, I imagined there could amazing woman who deserves the recognition. It was be a whole show about a psychologist who works in that my grandmother and my grandfather and another cou- environment and the different scenarios and personali- ple, the Hausmans. I think if you interviewed the higher- ties. It doesn’t have to be that particular scenario. But ups at UCP, you would get some incredible feedback whenever you’re working with psychologists, there are about her, because everybody—you know the show so many different story lines that come out. Everybody Loves Raymond? Everybody loves Nina Eaton. Eaton: You know, it’s funny that you say that, because I wrote something about that called A Little Therapy, and AM: It’s cool that you worked for them and went that I’ve tried to pitch it for years and years. It’s based on route—through the front door rather than the side or my life working in the unit. People think it’s a great back door. So what are you doing now? idea, but at the end of the day, nothing happens. But I have to continue to push, because that’s the only way Eaton: We recently wrapped the season premiere anything is going to happen. episode of Boston Legal, and I’m hoping to do more episodes. I’m also trying to get out on auditions for AM: Maybe you could find another writer who has a other film and television roles. different type of edge to that person and have them mas- sage what you’ve written, pump it up a little bit and give AM: How do you do that? it more whatever.

Eaton: I have an agent and a manager, and they’re Eaton: That’s a good idea. actively seeking work for me. But it’s difficult. It’s dif- ficult for anybody in this business. Unless you have AM: I used to publish National Lampoon magazine, and really made the A-list, it’s not easy to be seen for roles. we had some writers that in person were dead as a But you multiply that times 10 when you’re in my situa- doornail. But you’d give them something to write and tion. It doesn’t matter that I’ve had two recurring roles they’d hand it to you, and you’d say, “Wow!” So if you in series. It doesn’t matter that I’ve proven I can act find a person like that who has another way of looking with the best of ‘em. It’s always the height thing that at life, and you already have the basics, that might do gets in the way. the trick.

My mom’s an accomplished psychoanalyst and a little Eaton: I might explore that. person. My dad is an accomplished judge with cerebral palsy. They’ve been incredible role models. They’re AM: What are your hobbies? intelligent, intellectual, accomplished people, who always taught me to have pride, be a go-getter and fight Eaton: I love to read. I’m a huge animal lover. I have for my rights, which I do on an daily basis. I’m not try- two incredible Pomeranians, Moby and Mason, whom I ing to stand on a soapbox, but I am trying to make a adore. We go for walks. I write. I travel. point. I refuse to take roles that perpetuate negative stereotypes about people with dwarfism. I just won’t do AM: What do you write about? it. I’d rather not work than put that out there. And I know there are many little people who do choose to do Eaton: I write pilots and episode concepts, that kind of those kinds of roles. That’s their choice. But when they thing. do that, they also make it a lot harder for little people who are trying to be seen as just people, and it’s very, AM: Your family is where? very frustrating to me. If I take five steps forward, their choice brings me four steps back, because it says to a Eaton: In New York. casting director or a writer, “It’s OK to write these sophomoric, idiotic roles, because somebody is gonna AM: You’re the only one here? take them.” It’s a real challenge. Eaton: Unfortunately. AM: Have you thought about writing scripts yourself? AM: How often do you go back? Eaton: I have and then I try to pitch it, and a lot of peo- ple don’t get it, or they think it’s a great idea but nothing Eaton: Typically, every two months. happens. It’s really, really hard, when you have shows on the air like I Love Money and other reality crap, to AM: That’s not too bad. Which part of New York? get anybody to pay attention to anything that’s not bub- ble gum for the brain. Eaton: Long Island.

AM: When you described that year and a half that you AM: Did you say Lonk Island?

ABILITY 55 Eaton: I try to say “Long.” It may have come out Lonk AM: The way he rode that motorcycle in Wild Hogs, he because I was just home yesterday. It takes a while to had me at the first kick. shed the accent. It’s like a contagious disease. Eaton: (laughs) AM: Other than UCP, what other organizations do you support? AM: He’s great. And he puts the time into it. A lot of celebrities will throw their name out there and their Eaton: Media Access. I’ve started to volunteer with ani- connections, but he really puts in time and energy. mal shelters, and I attended the Genesis Awards , which has become an interest of mine. My really good friend Eaton: He does. Another person who’s like that is Pauley Perrette, who’s on NCIS, is very involved in ani- Robert David Hall. He is another actor who I adore. I mal rescue, and I’m getting involved with that more. know him personally, and he’s just a delicious teddy That’s pretty much it with organizations. bear.

AM: Do you know William Macy. AM: Delicious?

Eaton: Oh, he’s very active in UCP. I admire him. He Eaton: (laughs) Yeah. He is also on a successful series. presented my grandmother with an award; I have it on He’s as busy as can be, but he is so involved. He sits on video. the SAG Board of Performers with Disabilities. I don’t need to tell you what he does. You know. I know you AM: He’s got a great sense of humor and is very talent- guys did an interview with him, and he was on the ed. One year, he wrote and performed a song at Cal cover, rightfully so. This is a man who doesn’t just sit State University, Northridge’s annual technology con- back. He is an advocate. I think he’s fantastic. It’s peo- ference for people with disabilities. The song was about ple like that who inspire me to continue to fight for augmentative devices, and it was so funny! respect and dignity. I have been known to get involved with writers of shows to have them change things. Eaton: I would love to work with him one day. Sometimes it’s to the dismay of my representation; they think I’m a little nutty, but you know what? At the end AM: Maybe he’ll read this. Note to Bill: Ask Meredith to of the day it’s me, on screen, portraying a character, and read for your next project. that character needs to be respectable.

Eaton: I have always been an admirer of his. I really think he’s a brilliant actor. I love his work. He did a movie years ago, a TV movie, where he played a door- to-door salesman.

AM: That’s why we interviewed him.

Eaton: I don’t remember what the name of that movie was.

AM: It was called Door to Door.

Eaton: I was so incredibly moved by that. For days I was haunted by that performance.

AM: As you know, the person he was playing, Bill Porter, has CP.

Eaton: Yes. I was so moved that I looked up the back story. I wanted to know everything I could about that person. It was a really authentic performance. Typically I get angry when performers with disabilities get passed over without an opportunity to audition. So when they cast an actor who’s not disabled in a role where the character is disabled, it makes me upset. But in this par- ticular case, I was thrilled. There could not have been a more appropriate person to play that role, especially because of his involvement in UCP.

56 ABILITY s a soldier in Iraq five years ago, J.R. Martinez’s Martinez: I was deployed by the Army to Iraq in March world blew apart when the vehicle he was dri- 2003. A month later, I was escorting a convoy to the Aving hit a land mine. The corporal, who is now city of Karbala, when my front left tire hit a land mine. I retired, spent more than two years in the hospital, under- got trapped inside the truck. When I was pulled out, I going dozens of operations to put his body—and life— had been burned over 40 percent of my body, including back together. Now he’s up and running, literally, and my head, face, arms, hands and a portion of my legs and wowing crowds around the country as a motivational back. I was evacuated to a local medic station in Iraq, speaker. He dares to dream big and to find ways to make and then to Landstuhl, Germany, and finally on to those dreams come true. Recently Martinez was hon- Brooke Army Medical Center in San Antonio, TX. It ored with the Shining Star of Perseverance award, given was there that I had 32 surgeries in two-and-a-half annually by the WillReturn Council to honor a few good years. But if you stick with something, you might be men and women who demonstrate perseverance through surprised how far you can get. disabling illnesses or injury. AM: How long have you been in the service? ABILITY Magazine: Was it a situation where you actu- ally applied for the award, J.R., or did they come to Martinez: I’m actually retired. I joined in September ‘02 you? and got out in March’06.

Martinez: They came to me. That’s what makes it spe- AM: And prior to that? cial. If I had applied and got it, that would have been great, too, but they just called one day and said, “This is Martinez: Prior to that! Whoa, I remember a few birth- who we are, we’ve been trying to find you, you’re get- days, but not that many! I joined the military right after ting this award,” which makes it even more special. I do high school. I’m 24 now. (laughs) a lot of media, and people find me whether it’s through a newspaper, TV or radio. It’s pretty cool to attract such AM: Other than public speaking, what are your plans positive attention. for the next few years?

AM: That was your high point; tell me about the lowest Martinez: I plan to do motivational speaking on a wider point—your accident? level, which I believe will increase my opportunities.

ABILITY 57 Also, I want to write books and ultimately host my own AM: Other than the burns, are you dealing with any TV show. It would be about something positive, because other physical problems? we tend to get so caught up in the negative that we for- get all the good. I think every one of us needs to hear Martinez: No, but the burns are limiting in themselves. that positive story, and get that positive feedback to They have definitely affected my range of motion. Yet motivate us. So filling that role is one of my major through rehab and surgeries, I’ve been able to gain all goals. There are a lot of different things that I would my function back, which has been key. People often ask like to take on, not for the fame or fortune, but to prove me, “JR, how are you doing?” I say, “You know, if it to people that anyone can do them. wasn’t for the scars on my body, you would think that there’s nothing wrong with me, because that’s how good AM: It seems that public speaking comes naturally to I feel.” I’m running again, working out again. I stay in you. Did you take any classes? the sunlight. There are a lot of ways in which I was lim- ited early on. In fact, I was told there was no way I’d be Martinez: No, but I always enjoyed talking to people and able to do this or that, but here I am, doing those things being around them. I also had a lot of experience with and more. being the class clown and making myself the center of attention. So when the opportunity to try public speaking AM: So other than people’s perceptions of your burns, presented itself, I went for it. People told me I had a gift, you don’t have a disability? and I said to myself, “You know what? I do.” It’s a bless- ing. I’m lucky. What can I say? Martinez: Right.

AM: You’ve done the three most fearful things: Speaking AM: The Americans with Disabilities Act protects indi- in public, scaling great heights and being a soldier in viduals from discrimination in employment, even if Iraq. there’s only a perception of a disability.

Martinez: You’re right. I was afraid of heights, which I Martinez: You know, I had no clue that the ADA was got over in the army, because I had to spend time up in supposed to protect me from discrimination. I know that the air, doing jump training. At 18 or 19, I had to step people with disabilities may be perceived negatively, away from my parents and comfort zone and into the and yet they may still be perfectly functional. But I did- uncertainty of military life. I overcame that fear once I n’t know that there was a law to help. That’s pretty cool. got to Iraq. But a fear that some might not realize that I It’s the ADA, right? faced was seeing my face and body for the first time after my injury. That was scary. To be able to say, “How AM: Yes, the Americans with Disabilities Act; it was am I going to go into public and be accepted again? signed in 1990. The ADA contains many sections deal- How am I going to be looked at, to be received?” But I ing with accessibility and communications, transporta- overcame that, too. tion and employment. Under employment, it spells out how you can’t discriminate, and then it defines what a The first time I spoke before an audience of thousands of disability is. It’s the lack of one or more life activities, people, I thought: Man, am I gonna wreck this? Then I but it includes people who are perceived to have a dis- had to overcome going on TV. There are so many barri- ability. So under that clause, a person actually has a ers I’ve faced day in and day out. But I have faith, and defensible case if they can prove that that was the rea- I’m constantly pushing myself through obstacles. son they didn’t get the job.

From left to right — Steve Palermo, chairman of the WillReturn Council, Debbie Martinez: If they did prove it, is the employer forced to Palermo, wife of Steve Palermo, J.R. Martinez, Shining Star recipient, and correct the situation? John Roberts, interim president and CEO of Assurant Employee Benefits. AM: It depends on the facts of the case, your attorney and the court’s ruling. What it does is give you a real tool to work with, which is something that didn’t exist prior to the ADA.

Martinez: I think what you said about the ADA should give people hope. I interact with a lot of people who are disabled, and now I can say, “There’s something out there for you. Look into it.”

AM: What are you doing to market yourself?

Martinez: I actually work with a nonprofit organization

58 ABILITY that helps wounded troops who’ve returned from Iraq and Afghanistan. I’m the national spokesman. That puts me in the public eye quite a bit; I tend to travel nonstop. Through these appearances, I help get a lot of people involved. I’ve been doing other things here and there, which I would file under the category of networking. That’s what it’s all about. Every day I get up and I network. That’s what helps me.

AM: Are you still in touch with the people you’ve met who’ve also acquired disabilities in Iraq and Afghanistan?

Martinez: Yes. A lot of the people who were wounded over there turned out to be my best friends. It’s amazing to be able to see how they’ve taken what’s happened to them and moved on without looking back.

AM: Are you ever going to go back to Iraq?

Martinez: I want to go back as a motivational speaker. I’m trying to convince someone to back me, like USO. Would it be that bad to have someone who’s been there/done that come out on the other side and go back to encourage the guys? So far I’ve been unsuccessful in getting someone to buy in, but I’m hoping someone will budge. I want to go back. One of my good friends was talking to Armed Forces Entertainment (AFE), because I do a lot of stuff with country music’s Big & Rich. I’ve also done a lot of stuff with LeAnn Rimes and other musicians in that arena. We’re trying to put together a tour of the musicians we know, and take it over there.”

AM: That’s a great idea.

Martinez: AFE is aware of what we’re trying to do, and it’s something that they definitely want to look into and possibly move forward with. This sum- mer, we planned a welcome-home event at a Raleigh, NC, Air Force base for about 400 troops. We went for someone who had been wounded in Iraq to be the MC. That way, between acts, the vets could hear great stories from troops who were once there. It kind of motivates them to be able to say, “Wow, that’s one of our guys!”

I want to do a documentary. It would be cool if I could go over and film our trip, and then go on to Landstuhl, Germany, and visit the troops there, retrac- ing my steps. That would be emotional for me, to go back and do that.

Great American Country (GAC) Television in Nashville just interviewed me. We pitched the idea for them to cover the trip. So we’ll see what comes of it. If they give us the go, man, I definitely want some people to go with me so I can get the ultimate out of it.

I believe if I were able to get that TV station, GAC, to say, “We’ll cover it,” then we could go to the USO and say, “You know, this will be fully televised on national television, and USO’s name will be everywhere. But don’t send us with your people, we want to travel with our own.”

Steve Cochran sings country music, and he was a marine who was wound- ed in Iraq. I just ran into him in Nashville recently, and we had a great talk. So I’m thinking to myself, that’s another way to go. He was paralyzed for nine months and was told that he was never going to walk again, and then boom! He’s not only walking, but singing and has—from my understand- ing—a song pretty high on the charts. So obviously there’s a lot of differ- ent ways of marketing this so people raise their eyebrows and say, “Hmm, not a bad idea.”

ABILITY 59 t some point in life, most people will experience facial pain. This includes Asinus infections, eye irritation, ear aches and tooth aches. Then there are chronic pain syndromes, which afflict certain people over the course of their lives. About four out of every 100,000 people in the US will devel- op chronic facial pain each year. The most common is Trigeminal Neuralgia (TN).

This condition is characterized by sudden episodes of sharp pain, called paroxysms. They typically last a few seconds, but are excruciating. Symptoms can be triggered by the simplest thing, such as touching one’s face, brushing one’s teeth or chewing. The

60 ABILITY pain can be traced to the main sensory nerve to the face, called the Trigeminal nerve. It has three primary branches. The first is the Ophthalmic division because it serves the area around the eye and upper part of the face. The second is the Maxillary division and supplies the area of the cheekbone. And the third is the Mandibular division, serving the area of the lower jaw.

TN is more common in people who have Multiple Sclerosis, affecting two per- cent of patients who have that condition. Also 20 percent of those who experi- ence TN on both sides of the face, which is rare, also have MS. TN affects the right side of the face twice as often as the left, is twice as common in women than in men, and more often causes pain in the cheekbone and jaw area.

The most common cause of TN is compression of the nerve by a small blood vessel, where it enters the back of the brain. Tumors can also cause TN, as can Multiple Sclerosis. Several conditions should be ruled out before TN is diag- nosed, including shingles, Temporal Arteritis (a tender, swollen artery beneath the skin just in front of the ear), and other diseases of the eye or teeth.

Treatment of TN may involve medication, surgery or both. The medication that is generally used is Tegretol (carbamazepine), a seizure medication that works because what is occurring in the nerve is much like a seizure in the brain. While many patients require fairly high daily doses of the medication to get symptoms under control, the drug is relatively inexpensive and side effects are tolerable. However, regular follow up with a doctor is important. Other medica- tions that have proven effective for some patients include Lioresal (baclofen) and Neurontin (gabapentin).

Patients who cannot get control of their symptoms often seek relief through neurosurgery. The kind of surgical treatment will depend upon what is causing the symptoms. If it is a tumor, it is usually removed. Another approach is to sep- arate the small artery in the back of the brain from the nerve, a procedure called a Microvascular Decompression or MVD. This is often the best treatment. How- ever, if a patient is too old or ill to have it, has MS (which makes them ineligible for this surgery), or the procedure fails after two or three attempts, there are other options that are less invasive.

Unfortunately, they tend to be only temporarily effective and must be repeated after a year or two. These involve placing a needle in the face just under the cheekbone and inserting it into the hole in the underside of the skull, where the Trigeminal nerve exits before it enters the face. Once the needle is properly located with the aid of X-rays, any number of manipulations are used to effec- tively “deaden” or damage the nerve. This causes numbness on the face, which can be most welcome to those who are plagued by excruciating pain.

Manipulations may include:

—inserting a small tube (catheter) with a tiny balloon on the end that can be inflated causing high pressure on the nerve

—inserting a small electrode that transmits a radio frequency current that damages the nerve

—injecting a small amount of a certain alcohol, which also damages the nerve

—a precisely focused beam of high-energy radiation called Radiosurgery

If you are affected by TN, learn as much about it as you can, and then seek expert advice from a neurologist or a neurosurgeon. Remember to get two opin- ions to help you make the most informed decision about your health.

by Thomas Chappell MD

ABILITY 61 62 ABILITY ACROSS DOWN 1 Baseball player who later became a public speaker 1 Actor who played Ron Kovic in "Born on the 4th of from his wheel chair, Roy ____ July" 6 "To __, with Love" Sidney Poitier film where he beats 2 President who suffered from epilepsy race prejudice by character alone 3 What to do with people who say it can't be done (3 8 Pet snake, sometimes words) 9 ____ -privileged 4 European river 10 Brad Pitt film involving a deaf Japanese girl 5 Meaningless attempts to categorize 12 Latest 6 This well-known actress who plays in "Saving Grace" 14 Survive, just who has contributed a lot to Media Access, Laura __ 15 Fascinating Japanese game (2 words) 16 "_____ Kenny" movie which is a biography of an 7 Good way to eat vegetables Australian nurse who finds a cure for polio 8 Ray Charles, Jose Feliciano and Stevie Wonder were 17 Comedian who used his skills to cheer up patients all ___ musicians after battling with cancer himself (2 words) 11 Alias 20 Granted 13 A long time 23 Mark on the skin 18 "Tootsie" star, Terri who has had to battle with MS 24 Promotional effort 19 Save from danger 25 Medical expert 20 Watch 26 Movie where the jockey is blind on one eye (2 21 Pat gently words) 22 Little child 29 Little devil 25 Illness that B.B. King, Jack Benny and Andrew 31 Michael Phelps' nation! Lloyd Webber all had to fight 33 Eccentric 26 Far stronger than the body 35 President, for short 27 President who battled depression and won 36 Mimic 28 Nation based on freedom and opportunity for all 37 Conquer 30 Handhelds 39 Aerial observer, for short 32 Moral fundamentals 40 Exercise class 34 "Touched by an Angel" star who became a real-life 41 Sally Ride, the astronaut, was born here angel, Roma ___ 42 Compass direction 38 Florida seaport 43 Tom Hanks classic where he overcomes a disability 40 Psychic phenomenon to succeed in life (2 words) 43 A dandy 46 Second in a movie series 44 Period just before 47 Compete 45 Close friend 48 Environmental watchdogs 49 Holly Robinson ___ who created the HollyRod Foundation to fight Parkinson's disease 50 "Mrs Doubtfire" star, Sally who is helping people with osteoporosis answers on page 65 ABILITY 63 olitics is often a strange tapestry, woven from The Speaker, Jim Wright of Texas, was considered to diverse threads. Understanding it is simpler if be one of the most powerful leaders his party had seen P you have a good sense of humor and a greater since Lyndon Johnson. Some might assert that he sense of irony. learned his skills at the knee of Machiavelli. In the world of politics, however, that is not necessarily an Almost 20 years ago, I called an old law school buddy insult given that, for some, the end goal of winning to discuss two matters: his boss and the media’s elections is accumulating power. Wright later resigned betrayal of Americans with disabilities. amidst a scandal that would barely cause today’s politicians to blink. His alleged crime: He insisted “Dave,” I said to him, “it took the American media organizations buy large quantities of a book he’d writ- 200 years to create the negative images and stereo- ten before he would agree speak to them. types used to describe disabled Americans. It took the media only two weeks to negatively protray your When I went on to serve as special assistant for dis- boss. Do you think he would be interested in helping ability policy, I was on the staff of one of the most us change the media’s negative images and stereo- ridiculed Vice Presidents in U.S. history. Because of types of people with disabilities, if we helped him his verbal faux pas, the media portrayed him as a change his image?” bumbling idiot, and a political liability who couldn’t spell. However, compared to our current President, That’s how I became the Vice President of the United Dan Quayle was really more like Daniel Webster than States’ first and last special assistant to deal with dis- George Bush could ever hope to be. Quayle was also a ability policy. man whose integrity and honesty were never chal- lenged. I once said about him on a Public Broadcast- The first threads of my unique tapestry were woven ing Service (PBS) mini-series, “I have a genuine several years earlier, during my days as one of “Bar- affection for the man … and I don’t give a damn how ry’s Boys.” Between 1961 and 1964, I was a Young he spelled potato.” Republican from Texas, crusading for Senator Barry Goldwater, who was running for president. On the same PBS special I was asked, “What substan- tive things did Dan Quayle do?” Like many young people, my venture into politics was a reaction to the time and place into which I was born “Washington isn’t about substantive things, it’s about and raised. In our little corner of East Texas, my images,” I replied. “The Vice President came to our mother and I were certain that we were the only events, promoted our events, and allowed me to work Republicans. But in my junior year of high school, I for passage of the Americans with Disabilities Act.” discovered like-minded rebels who resented the estab- lishment. During my freshman year at Texarkana In four years, Dan Quayle met and shook hands with Community College, I was president of the only more disabled Americans than all the Vice Presidents Young Republican Club within 180 or so miles. I in our history. He was fighting for the Americans stuck with Barry through the presidential election with Disabilities Act even before I met him. debacle of 1964, which effectively ended my career as a political activist. I discovered, as Goldwater did, For the record: Between 1964 and 1994, I was a regis- that the Republican Party was moving to the right side tered Democrat, and not known as a particularly con- of the eagle. By today’s standards the neo-cons make servative one. Barry and I seem like raving Libertarians. I’ve been asked many times what I told the Vice Pres- Many people might look at my past and wonder how I ident about the disabled and disability issues. I still can say that my political activism lasted for only three clearly remember two things: years. The answer is simple. I learned the secret of politics: work for the official and not the candidate, “All disabled people in this country are not middle and you can have a more substantial effect on history. class white guys in wheelchairs.” And, “If you can’t accept the fact that people with disabilities can be Within one year, I served on the staff of the Speaker saints and sinners, then you can’t accept the fact that of the United States House of Representatives (a we’re human.” Just like politicians. Democrat) and on the staff of the Vice President of the by George Covington United States (a Republican).

64 ABILITY ANSWERS

ABILITY 65 Events & Conferences

66 ABILITY Events & Conferences

ABILITY 67 Events & Conferences

68 ABILITY Events & Conferences

ABILITY 69 Events & Conferences

70 ABILITY Events & Conferences

ABILITY 71 72 ABILITY

ABILITY 75 76 ABILITY