ABILITY Magazine - Kristi Yamaguchi

MAGAZINE

VOLUME 2009

KRISTI YAMAGUCHI

APRIL/MAY

THE VOICE OF OVER 50 MILLION AMERICANS

$4.99 Volume 2009 KRISTI YAMAGUCHI APRIL/MAY

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M ANAGING E DITOR Pamela K. Johnson

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

H EALTH E DITORS

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

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

E DITORS

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GREEN PAGES — Ready To Save Money?

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HUMOR — You Don’t Know Jack!

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SENATOR HARKIN — Let’s Stop Workplace Abuses

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LOS AL — A Place Military Families Can Call Home

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ABILITY BUILDS — New Accessible Homes

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MOSES DEGRAFT JOHNSON, MD — Ace Of Hearts

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WOMEN’S HEALTH — Give Your Ticker Some TLC

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ASHLEY FIOLEK PT II — More With The Teen Motocrosser

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UNITED CEREBRAL PALSY — My Child Without Limits

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KRISTI YAMAGUCHI — Here Comes The Neighborhood

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SCOTT HAMILTON — On The Ice, In The Boardroom

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MAJOR LEAGUE BASEBALL — Playing With A Disability

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SICKLE CELL ANEMIA — One Woman’s Story

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CROSSWORD PUZZLE — Guess Your Best!

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EVENTS & CONFERENCES

C ONTRIBUTING W RITERS

Spark of Inspiration, p. 21

Paralympic Games Beijing

HEADLINES — The Accidental Advocate

Extremity Games

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H UMOR W RITERS Pair of Hearts, p. 24

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The ABILITY Build program outreaches to volunteers with disabilities to help build accessible homes for low income families. We are currently seeking corporations, organizations and churches to sponsor more homes. This award-winning program builds homes and awareness, changing the lives of everyone involved. abilityhouse.com info@abilityawareness.org abilityawareness.org

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RIGHTING WRONGS

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echnology has a way of shrinking the world. It’s easy to travel to any place you want, and relatively simple to communicate with anyone anywhere.

Because it’s a “small world,” what happens elsewhere affects the United States. This reality compels us to prevent human rights abuses and to end discrimination against people with disabilities globally.

Until the United Nations adopted the Convention on the Rights of Persons with Disabilities in 2006, disability rights were not universally viewed as human rights.

But the Convention serves to promote, protect and ensure equal rights and freedoms for all persons with disabilities, and to show respect for their inherent dignity. Additionally, the Convention’s Optional Protocol created a way for individuals or groups that feel their rights have been violated to lodge complaints.

Internationally acclaimed disability law professor Michael Perlin wrote that the adoption of the Convention gives people with disabilities new hope. In the U.S., we have the ADA, Section 504 of the Rehabilitation Act, and various state and local protections. If we’re not heard, we have access to administrative agencies, or we can file lawsuits. Many of these protections are now available internationally.

HIGHLIGHTS OF THE CONVENTION • Equality, Non-discrimination, Dignity and Respect These Articles require that signatories to the Convention take all necessary steps to achieve equality for people with disabilities by doing such things as providing reasonable accommodations.

ACCESS TO JUSTICE • The Convention mandates that people with disabilities have the opportunity to meaningfully participate in all aspects of the civil and criminal justice systems.

Signatories to the Convention must provide reasonable accommodations to people with disabilities. Judges, police, and prison officials and staff are now trained to work with people who have disabilities.

STEPS TO INCLUSION • The Convention also requires that individuals with disabilities be included and integrated into society.

Specifically, Convention provisions outline that people with disabilities have access to a wide range of living arrangements and services within the community, so that they can both live and participate in various local events independently.

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Since the Convention on the Rights of Persons with Disabilities was first adopted, 137 countries have signed on, and 81 have signed on to the Optional Protocol.

Still, some advocates have raised concerns that these countries have been slow to ratify the Convention and the Protocol; only 50 countries have ratified the Convention so far, and only 29 have ratified the Protocol.

For example, advocates in Ireland have urged the government to ratify the Convention as soon as possible, but the Irish government has yet to do so. Advocates in the United Kingdom have also been frustrated by their government officials’ delay in these matters.

Some countries that have signed on to the Convention have entered what are called “reservations,” or they’ve filed “declarations” that modify or exclude certain provisions of the Convention. When a country files such reservations or declarations, they are exempt from having to comply with the specific provisions for which they have requested to be excluded, so long as the modifications requested are not inconsistent with the purpose of the Convention. Thus far, 11 countries have entered reservations and declarations limiting their obligations under the Convention. It is important that advocates within the worldwide disability community, as well as governments, United Nations and other officials, take affirmative steps to advocate that all the signatories fully ratify the Convention and the Protocol.

Failure of countries to sign on to the Convention and Protocol, as well as the length of time that it has taken other countries to ratify the Convention and Protocol, has raised concerns about their full and meaningful implementation. Most notable is the United States’ refusal to sign on to the Convention. The US has refused to sign on to the Convention and the Protocol because it has asserted that it already has the Americans with Disabilities Act, and that the Convention and Protocol would not enhance the ADA or other existing US civil rights. Additionally, US leaders say they will not sign the Convention because to do so would require that the US give up an aspect of its national sovereignty. To date, advocates in the American disability community have been unsuccessful in calls for the US to change its position.

Although the ratification process has, in the opinion of some, been too slow, or in some cases limited or nonexistent, the Convention provides a legally binding instrument with independent mechanisms to monitor implementation.

The Convention will also help expand advocacy capacity and opportunities for people with disabilities. The Disability Rights Legal Center and its attorneys are actively engaged in rights advocacy on an international basis. The DRLC frequently hosts international groups of disability activists who come to the US on exchange

programs to teach and learn about disability issues.

These have included groups from Russia, Bangladesh and China.

ties, as were many public streets and structures. These are precisely the types of barriers that the Convention is designed to address.

The stories that these groups share echo the issues identified throughout other countries, including over-institutionalization of people with disabilities, rampant segregation, denial of education and unemployment. Most recently, DRLC executive director Paula Pearlman hosted a delegation of women judges from Afghanistan.

The ratification of the Convention will increase the opportunities available for disability rights advocates to meet with advocates and government officials from other countries and expand upon the advocacy efforts.

Similarly, in conjunction with the Mental Disability Advocacy Center in Hungary, I traveled with a colleague from Disability Rights Washington to Kyrgyzstan in Central Asia in 2003. We went to review the thennewly enacted mental health law of Kyrgyzstan, and to evaluate its implementation. Among the numerous rights violations were systematic rape and sexual abuse of some involuntarily committed women; indefinite civil commitment; excessive and inappropriate use of physical restraints; inadequate basic necessities for the numerous individuals confined at the state psychiatric facilities, including a lack of mattresses and bedding, insufficient food and medication, heat and/or running water; severe under-staffing and a lack of adequately credentialed staff. As a result, my colleagues and I issued an extensive report finding that although the Kyrgyz mental health law was relatively protective of the rights of people with mental disabilities, its implementation was abysmal.

Additionally, the Convention will provide new avenues to seek remedies for rights violations perpetrated against people with disabilities. DRLC Litigation Director, Shawna Parks, and I have both conducted reviews of rights violations for people with disabilities internationally. Parks spent 1999 to 2000 in Hungary as a Fulbright Fellow working on disability rights issues. In the years since, she has continued her work in Eastern Europe, including Romania, Serbia and Bosnia, coorganizing two regional conferences of disability activists.

During her time in Eastern Europe, she identified widespread human rights violations of people with disabilities. They include systemic segregation in education, social settings and everyday life. Violations also included massive unemployment and underemployment, as well as social, political and economic exclusion. Transportation was often inaccessible to people with disabili-

With the passage of the Convention, we hope that the inadequate conditions and rights violations of people with disabilities will be addressed effectively and accountably throughout the world.

by Deborah A. Dorfman un.org/disabilities disabilityrightslegalcenter.org

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THE ACCIDENTAL ADVOCATE

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UNDERSTANDING THE BRAIN

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nstitut Pasteur researchers have demonstrated microscopic, real-time imaging of the deepest regions of the brain in a freely moving mouse.

They are using it to analyze the expression of Green Fluorescent Protein, the protein at the base of this year’s Nobel Prize in Chemistry.

“This advance should have profound impact on the field of neurological research,” said Uwe Maskos, PhD, a lab chief at Institut Pasteur. “Never before have we been able to see the deep reaches of the brain at the cellular level while an animal is moving freely. Gaining understanding of neurological activity throughout the brain is vital to understanding normal brain function, and the kinds of alterations that lead to neurological disorders.

essica Gerstle left her job as a producer for Dateline NBC two years ago to make a documentary about her dad, Dr. Claude Gerstle (below). During a seemingly minor bicycle accident four years ago, his spinal cord was injured and he now uses a wheelchair. In their documentary, The Accidental Advocate, father and daughter travel the country and interview the likes of Michael J. Fox and Governor Arnold Schwarzenegger, as well as a range of scientists. Their aim is to get stem cell research, which may hold promising possibilities for spinal cord recovery, up and running again. Recently father and daughter were encouraged when President Obama signed an executive order to lift President Bush’s 2001 federal funding ban on embryonic stem cell research. But there is still quite a ways to go before we fully exploit what is possible.

“Hopefully, my film will offer a telescopic lens to bring the issues up close, not just for cures for paralysis, but for therapies in a wide-ranging list of diseases and conditions,” says Jessica.

The Gerstle’s DVD can be purchased for $25 on their website.

“We now have visual, microscopic access to the living, working brain that we’ve never had before. We can now bridge the gap between processes at the cellular, organ and animal level.”

Maskos and his team, headed by Arnaud Cressant, collaborated with Mauna Kea Technologies, a Paris-based medical device company, to create a portable, easy-touse prototype cannula system to guide a tiny fiberoptic camera, Mauna Kea’s Cellvizio probe-based Confocal Laser Endomicroscope, into the mouse’s brain and hold it into place and provide balance. The Cellvizio probe allows physicians to view live tissue inside the body at the cellular level in real time. Maskos presented his findings at the Society for Neuroscience 38th Annual Meeting in Washington, DC last fall.

“We believe (these findings) could alter the research paradigm for understanding and exploring the brain and all the body’s functions linked to neurological activity,” said Sacha Loiseau president, CEO and founder of Mauna Kea Technologies. “Cellvizio has already changed how many gastroenterologists diagnose and treat GI disease. We’re extremely excited to see Cellvizio’s continuing impact on other areas of medicine and science.” maunakeatech.com institutpasteur.fr

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theaccidentaladvocate.com

HERE’S LOOKING AT YOU

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merican Airlines is partnering with the American Association of People with Disabilities (AAPD) to create an award honoring the best US television commercials featuring positive portrayals of people with disabilities. The two organizations intend to support and recognize companies efforts to feature people who are disabled in creative and compelling television advertising.

The contest, set to begin in July, is scheduled to run for several weeks. Companies and agencies will be able to submit their commercials, which will be judged by a panel of experts to determine the best of the lot. The final winner will receive a month of free advertising airtime on the American Airlines inflight entertainment system, where tens of thousands of travelers will see it each day. aa.com aapd.com

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here are things that we may hate to do, even though they’re part and parcel of being a responsible adult: Commuting to work, eating our vegetables, and breaking out the rags for some good, old spring cleaning. But if you consider green alternatives for each of these activities, you might enjoy them a bit more and save a few bucks to boot.

Long the province of kids, bicycles have become a viable transportation option. “Bicycle commuting is an excellent way to get exercise,” says KC Butler, who heads the non-profit California Bicycle Coalition. “It’s fun and environmentally friendly.”

Although the number of people biking to work is rising, it’s still a small percentage of total American commuters. While an estimated half of us live fewer than five miles from our jobs, according to Bicycling Magazine, only 1.67 percent of us make the trek using pedal power.

Butler would like to see more people riding their bikes, and promotes it as an everyday means of transportation and recreation. He coordinates California Bicycle Commute week each May, which features special activities organized by ride share agencies, cities, counties, employers, bicycle advocacy groups, bike shops and others who support the cause.

Not only is bicycle commuting a heart-healthy exercise, but it’s a space saver: 12 bicycles can be parked in the space that would be needed for one automobile. Traffic jams in the 29 major cities around the country cost commuters an estimated $24.3 billion each year. Driving consumes 43 percent of all oil consumed daily in the United States, and produces 60 percent of California’s smog.

Many bikes are suitable for commuting, but experts recommend that they be sturdy and equipped with fenders and lights, especially during winter months. When it comes to safety, bright clothing helps. Drivers will notice you if you have a headlight on the front of your bike and a red flashing tail light on the rear. Reflectors can strap to your ankle, or across your backpack. A helmet is mandatory equipment.

California Bike Commute recommends choosing roads that have wide, outside lanes or paved shoulders, and they suggest that you check out the route ahead of time by driving it during your normal commute time to determine potential traffic problems. Also, make sure your bicycle is in proper working order. Not only should all mechanical parts be in good repair (e.g., brakes, tires, gears), but your seat and handlebars should be at the appropriate height.

Adapted bicycles for those who are disabled can take various shapes, from tricycles to quads (four wheels) with recumbent seats and hand pedaling. Bicycles built for two are another adapted design with such options as side-by-side hand cycles or recumbent seating. Whatever your ability, there are bicycles that can accommodate you and take you where you need to go.

••• Last year, my nine-year-old daughter had to plant a seed for a school science project and observe the growth of lettuce over a period of time. She was so fascinated by nature’s miracle of life that she not only nurtured the plant to maturity, but also to our family’s salad bowl. As family budgets shrink and food bills expand, growing your own food is one way to save money and resources. There’s no packaging on garden-grown vegetables.

The food doesn’t have to be transported from distant farms, as your backyard garden is as local as you can get. In addition, home vegetable gardening gets

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you outside for some exercise as you plant, water, prune and pick.

First, consider the location and size of your vegetable garden. It must have proper drainage, good soil and appropriate sunlight. Another important detail is the arrangement of your garden. To maximize space, you may want to plant vegetables that only need limited room, and/or those that don’t grow too big. For example, watermelon or corn may not be the best choices for a small garden. In addition, put your tall-growing plants at the back side of your garden so that they do not block sunlight that smaller plants need.

Be sure that the kind of vegetables you want to plant are suitable for the specific season. Common winter and fall season vegetables include broccoli, cabbage, carrots, lettuce, peas and potatoes. Summer and spring vegetables include beans, cucumbers, peppers, squash and tomatoes.

Weeding and garden maintenance are further considerations. Weeds and foreign grasses can rob the soil of nutrients that your vegetables need. However, there is no need for chemical weed killers. A small vegetable garden can easily be weeded by hand.

To prevent access by hungry critters, such as small rodents, put a fence around your garden. Organic chemicals are an option for bugs. However, simple spraying with water is an environmentally friendly way to keep the hungry insects at bay. Those spiders and spider webs are more natural still. Spiders will prey on the insects that could be harmful to your garden. So, let them be.

If you live in an apartment or condominium, and want to do something more than water your Chia Pet, herb garden kits are one way to go. Hydroponic gardening kits, which allow you to grow vegetables in water, are another. Most hobby hydroponic gardens are less work than soil gardens because you do not have soil to till or weeds to pull; they can also be set up almost anywhere and can grow indoors year-round.

••• For the sake of full disclosure, I hate house cleaning.

But I happen to be married to a woman who’s a bit of a clean freak. With three kids and a small dog, we try to use non-toxic and environmentally safe products. Fortunately, there are a host of green methods to make spring cleaning environmentally friendly and safe.

The quickest way to cut your cleaning time is to have less to clean. So, the first step is to let go of stuff that you never use. Go through closets, junk drawers, attics and basements and collect anything you haven’t used (or even thought about!) in over a year. Now see if any of those items could serve another purpose.

Separate out items that someone else might need. This includes clothes, books, toys, furniture and gadgets.

Either donate them all to your local Goodwill or Salvation Army, or try selling them on Craigslist. There will be less clutter in your house, and you’ll lighten the load at the landfill. Now, you’re ready to clean.

According to the US Environmental Protection Agency (EPA), millions of tons of toxic cleaning products are washed down drains and find their way into our streams and lakes. In addition to polluting water supplies, the use of these toxic chemicals in our houses can negatively affect our health. As most people spend more than 90 percent of the time indoors, exposure to indoor environmental hazards has led to many health concerns. So buying eco-friendly cleaning supplies is a good way to protect our water resources and our bodies.

Look for third-party certifications such as Green Seal or Ecologo to ensure that the product you’re buying is truly environmentally friendly. But you can get even greener than that: Most of your home—from carpets to toilets—can be cleaned with a combination of hot water, vinegar and baking soda. You can find a slew of recipes online. When you make your own cleansers, you bypass the costs that a manufacturer passes on to you to produce and ship a product, and you save because you don’t have to use gas to drive to the store to get it.

No matter how green your sprays and scrubs may be, if you use an entire roll of paper towels to clean your bathroom or kitchen, you’re not being eco-friendly. Instead of paper towels, try using old clothing and sheets as dusting or cleaning rags. Toss them in the wash when you’re done, and use them over and over again.

In general, sustainability experts recommend that you avoid cleaners that contain phosphates. Some dishwashing liquids and fabric softeners contain these chemicals, which promote rapid algae growth and pollute water supplies. You can eliminate the need for chemical fabric softeners by adding a cup of vinegar to your washing machine’s rinse cycle.

You can even let houseplants, herbs and hydroponic gardens do some of cleaning for you: Certain leafy greens—such as Boston ferns and English ivy—absorb toxic chemicals and help clean indoor air.

Healthier heart, stronger legs. Healthier diet, clean house. What’s not to like?

by Renne Gardner fypower.org apps1.eere.energy.gov/consumer

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spin on why people are losing their jobs, their houses and their life savings. That’s why I’ve put the pocket change left I have from my battered 401k account under my mattress, and it will stay there until further notice.

Brother can you spare a good stock tip?

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h, the stuff that comes out in the news everyday.

First I read that multivitamins may not have any health benefits, and then I read that vitamin D lowers the risk of heart problems in teenagers. Forgive me for biting the hand of science, but does this apply to Flintstone Vitamins, too?

After years of hearing that coffee is bad for you, now I hear that it may help prevent Alzheimer’s. The sun can cause cancer, yet the sun’s rays can be good for you.

Many say that drinking alcohol is hazardous to your health, but others suggest that a glass of red wine clears your arteries. I don’t know what a glass of wine can do, but I can get pretty stoked on a whole bottle, after that, I’ll believe anything.

The guys in the lab coats flip flop on everything. Who knows what’s really going on out here? Who can we trust? Everyday theories and studies that so-called intellectuals were previously certain about, now get smacked down. Science is like my wife: It thinks it knows everything, and is constantly changing its mind.

Everyday I hear about global warming. Some blame it on humans, others attribute it to the earth’s cycles. One day I hear that the polar bear population is declining, the next that there are more polar bears then there were 20 years ago. Enough of the double talk; I need to know what’s really going on with those pesky ice caps. I mean, recently, they stumbled upon an iceberg that they never knew existed, which wouldn’t seem odd, if it weren’t the size of California. Couldn’t their gazillion dollar Hubble telescope spot such a huge glob of ice? One thing for sure, all this so-called science is making my brain melt.

It’s not just scientists that I have a hard time trusting, it’s also economists, and industry and financial execs. Let’s talk dollars and cents, here. Last year I watched the stock market plummet. Many times I thought about pulling my meager life savings out of the market, but no, I continued to listen to “the experts”- renowned economists and Wall Street gurus-who kept saying that we’d reached rock bottom and the worst was behind us. But we’re still tumbling down, down, down, through what feels like a bottomless hole. I mean, I don’t need an analyst to put some 12

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This kind of confusion has been dogging us for millennia. The city of Troy was thought to be a legend until it was eventually discovered. We still don’t have an answer for how the pyramids were built. Was it ramps, large kites, slaves, aliens? Did Adam and Eve ever really hang out in the Garden of Eden? We don’t have hard evidence. Yet, at some point, an archeologist will find a bone or a fruit core, make some stunning claim, and the media will trip over its shoelaces to rush this “knowledge” into the next news cycle.

Don’t get me wrong, I believe that experts make their best educated guesses, but I’m amazed at how often what we thought we knew is quickly thrown out the window. Every day history is erased and written back in again. Maybe historians should put away their pens, and start to pencil in their ideas, because, to put it bluntly, we don’t know Jack. Sometimes “maybe” is the most accurate answer that we have.

One thing I know for sure is that knowledge constantly changes. In the olden days, doctors swore up and down that leaches help to alleviate all kinds of medical problems. Later, we came to view these people as loons. But like bell bottoms, leaches have come back into style for their ability to ease swelling. That’s cool, I just don’t want anybody leaching off of me. And besides, if medicine is so smart, then why can’t it cure the common cold or the destruction of cellulite?

So my advice is to stay open-minded about what you hear. Studies come and studies go. We are constantly learning, gaining new facts everyday that cause us to change our minds. Take orangutans. Last week one started whistling. It wasn’t anything cool, like the theme to The Andy Griffith Show, but it was a noise that a bigass monkey isn’t supposed to make. Scientists have been studying apes for a long time, and none of them ever whistled. Not even if a male monkey was trying to hit on a hot female monkey. You see, orangutans were only thought to be able to make 32 types of sounds. But then, voila, the beast whistled, and it was time to rewrite the Cliff Notes on orangutans.

So, now, when I hear about some ground breaking discovery in the news, whether it be on diet, dinosaurs flying or horse manure, I don’t take it too seriously.

Because when the next report comes out and turns that theory on its bald head, once again I’ll feel empty and deceived like a jilted lover. It’s like having a lying friend. After awhile you lose confidence, and you’re left with no choice but to kick him out of your Fav Five.

“Ham on a Roll”

by Jeff Charlebois

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Recently, I chaired a hearing in the Senate’s Health, Education, Labor and Pensions Committee to assess the weaknesses in the current law as well as the lack of oversight that contributed to the above abuses. I intend to follow up with changes that will prevent and/or severely punish such abuses in the future.

One of the problems we’ve identified is that nationwide, within the 14(c) sub-minimum wage program, there are only three compliance officers to perform the annual review of roughly 2,500 renewal certificates for 5,600 employers and their 424,000 workers with disabilities, according to the Government Accountability Office. There is also precious little supervision by the DOL of the actual workplaces.

Making the Workplace Work Dear ABILITY Readers, For too long, people with disabilities have been vulnerable to exploitation in the workplace. Recently, we got a particularly shocking wake-up call. That’s when Henry’s Turkey Services in Atalissa, IA, was accused of paying employees with intellectual disabilities only $60 a month, even though they were working full time or nearly full time processing turkeys.

If that wasn’t bad enough, the company is alleged to have kept most of those workers’ wages and government benefits in exchange for room, board and “caretaking” at a company bunkhouse. Collectively, the pay of 21 men was docked by as much as $40,000 a month to live in a ramshackle building, for which their employer paid only $600 a month rent. Some of these workers are alleged to have been in this situation for perhaps as long as 20 or 30 years, according to media reports.

The fact that these workers with disabilities could be taken advantage of for as long as three decades without meaningful oversight or intervention by federal, state, or local authorities is unconscionable.

Clearly, there’s been a breakdown in the U.S. Department of Labor’s oversight of the 14(c) program, which allows employers to pay persons with disabilities less than minimum wage, based on productivity, and of a related program that allows employers to deduct the cost of providing food, lodging, and other services from those employees’ paychecks.

We have a responsibility to fix the laws that make worker exploitation possible. At the federal level, I intend to pursue legislation to require employers to inform workers about paycheck deductions for room and board, and to require workers—or their families, in the case of dependent workers—to agree, in writing, to the deductions ahead of time. We need to outlaw housing deductions that are not approved in advance by the U.S. Department of Labor.

We must require that employees with disabilities be certified as eligible for the special minimum wage program, and that work sites be inspected before employers are certified to participate in the program.

We should also reinstate a wage floor, which we had prior to 1986.

We need stricter penalties for employers who violate the law, and we need more effective enforcement of the law. Any employer who allows its special minimum wage certificate to lapse should trigger followup by the DOL. And we need to be especially vigilant about jobs in industries in which abuses have historically been widespread.

Finally, we need to increase information sharing. The federal government funds protection and advocacy (P&A) programs in each state to safeguard people with disabilities. Let’s make sure that these programs—as well as appropriate state officials— stay informed about sub-minimum wage employers so they can provide additional oversight in this matter.

I have little doubt that the abuses documented in Atalissa are also occurring unchecked at other worksites around the nation. We have a responsibility to protect individuals with disabilities and other vulnerable people in the workplace.

Sincerely,

Senator Tom Harkin harkin.senate.gov

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Photo by: Diandra Jay

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t’s known as one of the most dangerous areas of Iraq: the Sunni Triangle, an area west of Baghdad, where violence frequently erupts in flare-ups between armed Sunni opposition and the US-led Coalition. In the eye of the storm lies Camp Anaconda.

Known as “Mortaritaville” for the regular onslaught of hostile fire, the attacks rarely hit populated areas of the base. Faint announcements of “all clear, all clear” are mainstays of daily life. Unfortunately, this was not the case on the frigid morning of July 16, 2006, when mortar rocket fire seared into Camp Anaconda.

“Take Cover!” a commanding voice rang out.

As soldiers began diving out of the way, Army Sergeant Major Jesse Acosta again cried out to his soldiers: “Take cover!” That’s when the concussion of the blast hit him and shrapnel ripped through his body, destroying both his eyes, severing his nerves and nicking his brain. Severely wounded, he continued crawling as he yelled orders to his team.

Days later, when he awoke in Germany, a doctor told him: “There’s bad news. You’ll never see again.”

Unable to remember the minutes, weeks and months that followed, Acosta continues to piece together the events of that fateful day from stories told to him by fellow soldiers, family and friends.

Once he arrived back in the States, he was treated at Walter Reed Medical Center, in Washington, DC, before being flown out to a rehabilitation center for the blind in Palo Alto, CA. There he found himself frustrated and angered because the new facility not only felt to him like a convalescent home, but also because it seemed unprepared to treat the full extent of his injuries.

Throughout the transition, Acosta relied heavily on the emotional support of his wife, Connie.

The Veterans Administration provided her with housing while her husband was treated at Walter Reed, but there were no such accommodations for their family once he was transferred to Palo Alto. “I was lucky that because of my rank we could afford to put my wife up at the local Marriott. What about the younger guys?” Acosta asks. “What about the privates or specialists who are in this same situation, and can’t afford to pay for their wives to be with them?”

Not that it was easy for the Acostas: they had to cover the additional expenses out of pocket, which added stress to an already trying ordeal. “It was a burden. Yes, it was,” says Acosta, who in losing his sight found his voice as a veteran’s advocate. “But it’s not just about me. What about the rest that came before me and after me? The recovery becomes more difficult when you don’t have someone familiar to you. You’re not getting the assistance that you need coming back from the battlefield.”

Since the start of Operations Enduring Freedom and Iraqi Freedom in 2003, nearly 35,000 US service members serving in the conflicts in Afghanistan and Iraq have made that same, difficult journey home after being been severely wounded in combat.With the advanced care available both in the war zones and in the military’s medical centers, they are surviving at higher rates,yet many require extended outpatient rehabilitation.

Currently, more than 100 VA facilities across the country provide specialized services for returning service men and women who are contending with complex issues, such as traumatic brain injury and amputation, or severe disorders, visual impairment and muscular-skeletal injuries.

There is, of course, overlap between physical and psychological injuries, and the degree to which a family can be present with an injured loved one is believed to be beneficial to healing. Yet a family’s ability to stay throughout the treatment period depends more on the location of the facility where the patient is receiving care, than the severity of the injury sustained.

In Acosta’s situation, when his wife was present at Walter Reed, she provided a great deal of emotional support for her husband, became an integral member of his treatment team, and spoke up as an important advocate for him.

“Particularly in the case of injured individuals who may not yet be totally cognitively aware and alert, the family can provide important information to the rehabilitation team about that service member’s background, interests and special needs,” says Barbara Sigford, MD, the national director for Physical Medicine and Rehabilitation at the US Department of Veterans Affairs.

On a scale of one to 10, how important is a family’s presence?

“It’s invaluable,” says Sharon Benedict, PhD, acting program manager of Polytrauma, TBI Education, and Caregiver Support for the VA. “By simply being there, the family reduces the stress level considerably, and it allows the patient to engage in the rehab process more fully. It provides validation to the patient that there is a good reason for them to get well.”

From the beginning of the treatment process, medical staff encourage families to become involved as members of the treatment team, helping to set individualized goals that are relevant to the service member. As the individual moves into outpatient care, family continues to provide critical emotional and psycho-social support.

One element that is increasingly key to the recovery process is involving a service member’s children.

Experts agree that bonding during this difficult time is therapeutic for both children and the healing parent. “In ABILITY 17

injured, because a child’s imagination often conjures up a worse scenario than may be the reality.

“Bringing the children in at the appropriate time, giving everybody the appropriate groundwork, responding to the kids’ needs, building the basis to reestablish that bond with their parents, answering their questions and engaging them in the process… that’s what’s really important,” Sigford agrees.

“There was one extremely difficult case,” Benedict recalls. “The soldier’s wife came with him and she was about eight months pregnant. She had the baby during the time that he was with us, and I believe that having her and the baby here really did help him focus on something beyond the day-to-day medical problems he was experiencing.” As the vet watched his new baby go through the development process, he pulled himself out of his own woes and reengaged with family, and what was going on in the world around him. His family’s presence helped to focus on “the reason why he was struggling as hard as he was to get better.”

Acosta finds a new path

Family & healing: They go together

my experience, a lot of times the parents are nervous about having the kids present,” shares Benedict.

“There was a case at Walter Reed a while back where the dad was very seriously injured. Although the wife had been present for a few months, the kids were back in Alaska. It was approaching Christmas, and everyone was understandably nervous about the children’s arrival.

The kids knew that Dad was hurt and had had a craniectomy with very obvious physical signs of him being injured. When they showed up, the kids wanted to see where Dad had been hurt; they wanted to look at the helmet. They wanted to just spend time with him.

“In a lot of ways, having the kids present grounds the patient and their spouse, because the kids just take it all in. They feel like they’re helping and they’re an important part of the process when they can engage in some of the rehabilitation tasks.”

Caregivers find that children tend to adopt a surprisingly pragmatic approach to what needs to be done and are good about helping to enforce it by saying such things as: “Dad, now it’s time for this or that,” or “the speech therapist said we needed to practice that.” Just being there can ease children’s anxiety when a parent has been 18

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At the time of Acosta’s injury, he had four children between the ages of three and 30, and agrees with Sigford and Benedict: “Having your family with you, even the young ones, is absolutely part of your recovery. But you have to ask yourself: What environment do you want your children in? The Marriott didn’t have a playground or anywhere my kid could play and it wasn’t right. I’ll be honest, once I got home and I was able to hear my surroundings—my kids and my grandkids— that was when my healing began.”

Just as families play an integral part in the recovery process, they also play a critical role during a vet’s transition in returning home and into the civilian world.

Jeremy Weismiller was a Staff Sergeant in the US Marine Corps when he sustained injuries from a blast in Iraq. Now medically retired, he was able to have his wife present during his recovery. “You’re going from a military environment to a civilian environment, and having your spouse and your children around is helping you to reach the new life ahead.”

To make the transition smoother, it becomes important for families to be educated on the rehabilitation process, to learn the problems the service member is having, and the rehabilitation strategies that have been prescribed. With that knowledge, the family can reinforce those practices at home and within the larger community.

“The hospital setting is very structured, supportive and fairly predictable. When you move into the community setting, it’s less structured, more complex and more demands are made on the individual. No longer do you have a professional staff member there, but it’s the family who’s there 24 hours a day, seven days a week,” says Sigford.

When the medical staff is no longer by their side, family members assume the responsibility of observing the individual in their community setting, and the pace of progress. These same family members are on the front line, watching for any new needs that might arise and helping the rehabilitation team meet those needs.

Although it’s always the intention of the VA to ensure there is a loved one by the side of every service member, this is not always possible, especially during prolonged recovery periods. Additionally, when housing is ill-suited for children, or when paying for local housing resources imposes financial hardship, the families of wounded warriors often find it infeasible to stay throughout the recovery period.

While paying for a hotel room can come with a hefty price tag, so can the absence of family during recovery: “One of the things I’ve seen for some of our veterans or service members who don’t have family who are close and able to step in and be part of the rehabilitation process, is a higher degree of isolation during treatment. When they do return to the community, I’ve often seen less integration back into the community and typical life activities because they don’t have someone assisting with that process on a day-to-day basis,” says Sigford.

“It’s devastating for those to come home from war to an environment where you can’t have your family with you,” adds Acosta. “Both parties are missing out: not just the warrior who came home injured, but the spouse and also the child who is missing out on being with their mother or father.”

Although there are many organizations across the United States that work to support wounded service members, the need for accessible housing for them and their families significantly outweighs the supply. Accessible accommodations in proximity to second-tier rehabilitative or polytrauma centers are especially needed.

ABILITY Awareness, the nonprofit sister company of this magazine, has responded to this need—and to a request by Brigadier General (Ret.) Combs—by building “The ABILITY House at Los Al.” The nearly 20,000 square-foot home, which will be erected on the Los Alamitos Joint Forces Training Base in Los Alamitos, CA, will serve combatwounded service members and their families as they undergo extended outpatient rehabilitation.

The house will feature 25 accessible suites, each with a private restroom, along with common shared areas including a family room, kitchen, dining room, gym, library, game room and laundry facilities. This haven, just minutes from the Long Beach VA Medical Center, will serve many as a “home away from home” during their extended outpatient rehabilitation at both the Long Beach and Los Angeles VA Medical Centers.

In designing this home, ABILITY Awareness focused on the range of accessibility needs of future guests, including people who have had amputations, are blind or low vision, or who have acquired a spinal cord injury, and will provide the highest level of accommodations while ensuring the warmth and comforts of home.

During a focus group, one Marine talked about spending time with his young child on a playground since he sustained a spinal cord injury and now uses a wheelchair: “I didn’t expect the emotion to come out like it did. You don’t want to cry in front of your family, much less other men.” In honor of the sensitive and private road many must travel during their recovery, the ABILITY ABILITY 19

House at Los Al will feature a private accessible playground that will offer servicemen and women a chance to reconnect with their children out of the public eye.

At the request of the group interviewed, a small gym will be included in the house to provide 24/7 access to basic tools of rehabilitation, and provide a safe venue for a vet, who may be newly blind or using a prosthesis, to experiment with equipment that may have once been familiar, but now feels awkward. There will be falls off the treadmill and weights dropped, and the freedom to have these experiences in a safe environment has been touted as a critical part of the transition.

One of the most unique components of the house will be the way in which combat-wounded veterans and civilians with all degrees of disabilities and health conditions will be engaged as volunteers in the construction of the home. Veterans will have the opportunity to demonstrate their skills and talents, and to realize that they can still achieve the dreams they had prior to incurring their injuries, though the path may will likely be modified.

T

his project is in the early stages of development so there are excellent opportunities to get involved from the start.

They gave, now it’s our turn!

The anticipated cost of this project is $5.5 million and the biggest need is for financial support. Every individual donation, regardless of size, will make a difference. All gifts, large and small will be recognized.

“While we focus on family involvement in the rehabilitative process, I think community involvement is also just a huge factor in reintegrating our veterans into their home communities and the activities they can participate in,” Sigford says. “Families tell us they often feel isolated after a period of time because of the lack of community support. This project takes it one step further by getting the entire community involved.”

Do you own or work for a company who supports our troops? Corporate sponsorship of the ABILITY House at Los Al is a very tangible way of making a direct impact on the lives of thousands of injured servicemen and women along with their families each year. Contact ABILITY Awareness to tailor a corporate sponsorship benefits package to meet your company’s funding priorities!

The benefits of bringing the community together on this project continue. In addition to demonstrating the capacity of injured veterans as volunteers, the ABILITY Build will also show the community their employability. At a time when 40 percent of vets are unemployed, this project couldn’t be timelier.

Donation of Goods and Services:

In the end, what matters most is Acosta’s question: “What about the warriors who come home after me?”

To thousands of our injured warriors and their families, the ABILITY House at Los Al will be their answer.

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THE ABILITY HOUSE AT LOS AL

ABILITY

Help stretch the budget for this project by donating your goods or services! Do you own a construction company that would like to help? Are you a retired contractor who would be interested in overseeing volunteer teams? Do you manufacture an item that we’ll need for the interior, exterior or landscaping of the house? We want to hear from you!

by Taylor Chazz abilityhouse.com/losal abilityawareness.org e-mail: losal@abilityawareness.org 949.943.4496

Build a house? No sweat!

The author confers with Billy, a

Habitat for Humanity crew leader

T

oo many people with disabilities assume their options are limited before they’ve fully explored them. Often these perceived boundaries don’t stem from actual physical barriers, but from psychological ones that we impose upon ourselves. Occasionally they are reinforced by well-meaning friends and loved ones who think they are being helpful when they say: “Let me do that for you.”

Recently, the ABILITY Build project chipped away at some of these barriers by putting people with disabilities to work on a construction site in Lynwood, CA. I was fortunate enough to be a part of the crew, which was made up of people both with and without physical disabilities. Each of us was motivated by the common goal of building homes.

More specifically, it was the dreams of the Martinez family and their soon-to-be neighbors, the Briggs and Osbornes,who inspired us that warm, sunny Friday. We were also driven by camaraderie, resilience and pride in a hard day’s work. I had never been part of a collaborative construction project before and, as someone with cerebral palsy, had never expected to end an afternoon covered in drywall dust and with my arm sore from pounding nails. I was also surprised to find that this was an experience to which I would eagerly return, heartened that a door, which I had previously imagined to be closed to a skinny kid on crutches, swung wide open.

Now three low-income families are enjoying shelter.

One of them, the Martinezes, have a 12-year-old son named Cesar, who has severe cerebral palsy and a

cognitive disability. In their previous living situation, the Martinezes were not allowed to bring Cesar’s wheelchair into the home because the landlord was concerned it would damage the floors. Now not only will Cesar be able to have his wheelchair nearby, but for the first time he will have his own bedroom. The homes come thanks, in part, to Habitat for Humanity of Greater Los Angeles. They represent not only an expansion of space, but also of freedom.

Those of us building the homes also felt ourselves grow. The truth is, I personally don’t know many people with disabilities in my daily life. We don’t travel in packs and we don’t speak a special language, so my encounters with my wheelchair-using brethren are often coincidental, sometimes capped by a passing nod of acknowledgement and solidarity. On this construction site, however, I met a rock guitarist born without arms who used his feet to manipulate a power drill. I met an actor who, on a prosthetic leg, dashed from one job to the next. I met a woman who was a paraplegic, and who rolled around the site in a wheelchair as if she were born to be there.

As a part of the ABILITY Build, I may not have learned much about construction—it’s fairly easy to figure out the relationship between a hammer and a nail—although I did learn something about myself, something that is difficult to articulate, but deeply felt: I saw with new eyes that my self-imposed limitations were unfounded.

Oh yeah, I also helped build a house.

by David Radcliff ABILITY 21

Briana and her sole mate, Mark, get the job done

‘‘

Y

ou complete me.” That memorable line from the 1996 movie Jerry Maguire, now holds special meaning for me.

A former Habitat for Humanity volunteer, I hadn’t had the opportunity to help with a build since becoming a paraplegic nearly seven years ago, and I was excited for the chance to participate again.

I arrived at the ABILITY Build site with eagerness, protective goggles and sunscreen. After our safety orientation for the build, which was hosted, in part, by Habitat for Humanity of Greater Los Angeles, each volunteer was assigned to a crew leader. I got Bethy Davis, a cute, tall, slender, blond girl who could make any tool belt look good. She then chose Mark Goffeney as the third member of our crew. Looking over at him, I noticed right away that he didn’t have arms.

“Aren’t we a pair?” I thought to myself. Right away I knew this was going to be quite the experience: a girl who can’t use her legs, and a guy who has no arms.

Unbeknownst to me, however, I was being sized up by Mark at that exact same moment. He was quick to observe that I was a female in a wheelchair. Little did we know then that we would get an immense amount of work accomplished and change a few perspectives along the way.

I was put in charge of measuring and cutting the wood.

Bethy provided me the measurements, and I used a chop saw to cut the long 2X4’s down to size. Mark saw me struggling to hold down the planks, and quickly jumped 22

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in to help. “I will pick up the other end and level it for you,” he said. I kept my eye on the wood as I fed it through the saw, all the while wondering how Mark was picking up the slack behind me. After lining up the next 2X4 on the table, I glanced over my shoulder and saw him lift the wood with his foot.

“Of course that’s how he does it,” I thought to myself. It was at that moment that Team Mark, Bethy and BrianaMB2 was in full effect.

Within the first hour, Mark and I were “in the zone” and had gotten a good handle on our tasks. Using one foot, he pulled out the tape measure and, with the other foot, used a pencil to mark the necessary length needed. As he passed the boards to me, I used the chop saw to cut them to his precise measurements. We took great pride in our work, and were pleased when we received the thumbs up from Bethy for our impeccable accuracy.

At one point, I turned to my teammate and said: “Mark, you complete me.” We both burst out laughing, and yet it was true. We were a force to be reckoned with. Neither of us questioned the other’s ability, and we continued to encourage one another with each new task.

After all the sawing was finished, we moved on to drilling. I watched as Mark picked up the drill with one foot and the wood with the other. He lined up the drill with the wood and pulled the trigger with his big toe. He controlled the drill with ease and precision. As he finished each piece, he picked up the wood with his foot and placed it on my lap. I then drilled the screws into

Sawing, drilling, tapping: It’s all in a day’s work.

the holes he had created. We worked diligently through the morning, until we heard the announcement that lunch was being served, and then went together to wash my hands and his feet.

Our next assignment was to cut dry wall. This took us a little longer to figure out. Because our work area was on a slight slope, I was rolling all over the place—not something I wanted to do with a sharp blade in my hand! We took precautions by re-situating our work area so it would be safer.

After I made a few cuts to score the dry wall, Mark stepped on the seam with his bare foot to snap it along the cut that I had made. As the workday neared its end, Mark was determined to cut a measured piece of dry wall from start to finish. I watched him take the blade between his toes and cut along the measured line. After a few strokes, he once again used his barefoot to break the piece off. Being a former cheerleader, I broke out into a cheer for Mark. We definitely had team spirit!

Mark and I spent the whole day together, and learned a

lot about each other. One thing that was apparent from the beginning is that we share a similar sense of humor, which helped fill the day with laughter.

With all the preparation and support I received along the way, I knew I was capable of success. Mark knew he was capable of it, as well. In moments when we would not have been so successful as individuals, working together became our strength. Combining our talents gave us the means to “complete each other” and our jobs. brianawalker.com

by Briana Walker

For more on the ABILITY Build program abilityawareness.org To learn more on Mark Goffeney and his band “Big Toe” bigtoerocks.com juniorblind.org newdirectionsinc.org

ABILITY 23

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W

hen you think about someone getting their heart cut out, you probably think about horror movies. Or done-me-wrong love songs. But snipping out a person’s heart doesn’t necessarily make you mean spirited or low-down.

As a cardiovascular and thoracic surgeon, Moses deGraft-Johnson, MD, “procures” hearts—and lungs— with the best of intentions. With the University of Minnesota Medical Center as his home base, he travels the country, hopping off planes and into waiting ambulances that take off with their lights flashing and sirens blaring. They rush towards a local hospital, where an individual who has been declared brain dead, but who has been kept on life support, awaits.

DeGraft-Johnson goes in, changes into surgical scrubs and performs a brief, yet complicated procedure on the body, before returning to the ambulance, this time with a cooler by his side. Then he’s raced back to the airport with a special delivery for a sick patient whose days previously had been numbered.

“Oh boy! Nothing compares,” the doctor says of this role that places him squarely in the breach between life and death. “As one family cries for a lost loved one, another cries tears of joy for a family member who’s been saved.”

Today, more than 100,000 people are waiting for transplant surgeries, according to the official U.S. government website for organ and tissue donation. Nearly 28,000 transplant operations were performed in 2008.

Each day, about 74 people receive an organ transplant, and about 17 people die waiting for one. The procedure is considered to be a last resort for patients in the final stages of illness, and only one in four people who need an organ is expected to get a transplant in time for it to save their lives.

As a medical student a decade or so back, deGraftJohnson embarked on his current path during an anatomy class. He performed so well that he became the teacher’s assistant in the very course that he himself was taking. As he continued his studies, he began to see that while all doctors eventually fix floundering boats, surgeons patch torn sails instantly.

“With chronic illnesses, such as high blood pressure, you don’t really change a patient’s situation in that moment. You prescribe medication, they take it, and then you start to see a change,” he explains. “But if I’ve got someone who’s had multiple gunshot wounds, I do surgery on them, and the next day they’re talking to me, then I’ve saved their life.”

He experienced one of those stark turnarounds during the last year of a cardiothoracic fellowship, when he served on the trauma unit of a Queens, NY, hospital.

That day he recalls that a patient with multiple gunshot ABILITY 25

The transplant team carries a special delivery.

wounds was left on the steps of the emergency room.

Working with the team, he helped to save the life of a young man who would go on to become a popular rapper. After the incident, deGraft-Johnson’s friends heard about his surgery on someone with an “inexpensive” name. His buddies laughed about the unusual name.

“They were—who? What? A quarter? Twenty cents?”

But it wasn’t long before the object of their humor—and deGraft Johnson’s emergency procedure—went on to fame and glory, with a huge dose of “street cred” for toughing out that blaze of bullets.

SILVER LININGS

DeGraft-Johnson on the job.

The now famous performer pulled through, but many others facing major health crises do not. Those who elect to become donors, as indicated on a drivers’ license, or whose families contribute a loved one’s organs, set the process in motion. Recently, within a three day period, two high-profile organ donation cases made headlines: Actress Natasha Richardson, 45, died after what seemed a minor fall, and her family quietly donated her organs. Then the father of one of four Oakland police officers, tragically gunned down after a routine traffic stop, is reported to have kept his 41-year-old son, already declared brain dead, on life support until his organs could be harvested.

A liver, kidney and heart from slain cop John Hege is reported to have saved four men, and his donated tissue is expected to enhance the lives of up to 50 more, the California Transplant Donor Network reported.

While there’s no word on who received Richardson’s organs, a family friend told People magazine that the gesture “is very Natasha... At least by donating her organs something good could come out of [the tragedy].”

The doctor has a soft spot for children.

Organ donor advocate Andy Tookey says such high profile cases help the cause: “Celebrities and role models could dramatically increase the number of people who are prepared to be donors by their promotion of organ donation.”

Richardson and Hege became donors on opposite coasts, while deGraft-Johnson’s neck of the woods in recent years has been the Dakotas, Nebraska, Iowa, Wisconsin and Minnesota. They are part of the United Network for Organ Sharing (UNOS), a nonprofit organization that oversees a national database of potential recipients and their medical details to assign them a place on the registry. Where one lands on the list is based on degree of need, length of time on the list, type of transplant required, nearest transplant center and more.

When an organ becomes available, UNOS sends an alert message to all transplant centers within their network.

26

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That’s when his team logs onto their Intranet, accesses the deceased patients’ info, and makes the initial evaluation of the organs. They review the donor and recipient’s blood and tissue types, immune status, physical distance between donor and recipient, and so on.

If there isn’t a match for deGraft-Johnson’s team, or the patient is not immediately available, perhaps because they’re on vacation, UNOS keeps calling down the recipient list, until a match is made.

When his team decides to take an organ, “I leave Minnesota and go to wherever the organ is,” the surgeon says. “Once there, I go through all the paperwork and make sure my partner didn’t miss anything [in the initial assessment]. I go alone, or sometimes take a profusionist, who helps with organ preservation for transport.”

They want to know the donor’s medical history, the present illness, information on how they died, and what killed them, deGraft-Johnson says. Then there’s the physical inspection: “We do an echocardiogram, check the valves, do a heart catheterization, a cardiac angiogram, we check the blood vessels…”

If everything pans out, the heart must be stopped, or as he puts it “arrested,” so it can be procured. That’s when he puts a cross-clamp—a kinder, gentler type of wrench—over the aorta until it stops pumping out fluids.

That way they can pour in a solution to cause “cardioplegia,” or temporary paralysis. With the heart stilled, the surgeon can cut it out of the body, store it in a cooler, and take it on to a new home.

Once the heart is sewn into a recipient, in a procedure called anastomosis, the cross-clamp is removed and the heart can get back to work.

“I’ve done tons of transplants,” deGraft-Johnson says, “but every time I see a heart start to beat again, it’s like the first time.”

NEATNESS COUNTS

their insurer—either. He estimates the tab for getting a new heart at about $658,000.

Harvesting a good heart takes 20 minutes, and then they put in another 10 minutes to package it for travel.

While his team must later be meticulous in placing this donor heart, precision is far less critical in getting rid of the heart it will replace: “You usually just whack it out,” he says. “You don’t have to be very fine about it.

It takes about 10 minutes.”

DeGraft-Johnson’s team is understandably picky about the organs they procure, and take great care to ensure that a transplant will be successful. Aside from performing the exhaustive battery of tests, they have to make sure that an organ recipient is fit enough for major surgery. They also suggest that a patient stick close to home to avoid being out of network and getting passed over if the call comes that an organ is suddenly available.

Sometimes the surgeon must offer his patient an organ with a disclaimer, such as the recent case of a 21-yearold donor who had a history of drug use and who ultimately took his own life. “I had to tell my patient that the person who had the organ engaged in high-risk behavior,” deGraft-Johnson admits.

Lingering doubt cast a shadow over the young donor’s organs, and when deGraft-Johnson offered his patient one of them, which to be fair had been tested and cleared by the network, the patient declined. “The knowledge of the risky behavior didn’t sit well with him. It was like moving into offices overlooking the water, and they give you a little cubicle with no view,” deGraft-Johnson says. “The history of the organ took away all joy he should have felt in receiving it.”

When a potential recipient, who may in fact be very near death, asks deGraft-Johnson’s advice about an organ with a checkered past, he tells them, “If it was my brother or family member, I wouldn’t take it.” He says that it’s not enough to give people the facts, he also has to help them interpret them.

“Every surgeon is not perfect, but when it comes to this level of skill there’s no room for error,” the doctor explains. “You’re not just cutting out a heart. There’s calculation that goes into it, there’s a certain technique that you have to perform. If you miss one of those steps, you can cause a heart to fail, and then it’s no good. Every single step that goes into the calculation must be precise. He notes that it costs a lot of money for a medical center to charter flights and coordinate all the moves.

When an organ donation is a go, the team operates on short notice. “We’re expected to perform under any circumstances, and fly under any circumstances.”

Timing affects every aspect of the job. “The six hour window during which an organ leaves one body and is sewn into the next is called ischemic time,” the surgeon says, and then adds: “If those hours elapse, and the organ hasn’t been transplanted, it’s no longer of any use.”

“It’s a big production. You cannot be the reason the production didn’t take place. It’s like everything is set and ready to go, and the main actor loses his voice…

In a $100 million dollar production, somebody’s going to be very upset.” It’s not cheap for the patient—or

A transplant is calculated from the second he takes off from Minnesota. If he is going to Michigan, for instance, he reviews the paperwork once he arrives, and then calls the team back in Minnesota, so they can bring the recipient into the holding room and get them ready ABILITY 27

The surgeon with Earl Bakken, founder of Medtronic.

for the operation. “The next time I call is when I make the incision in Michigan and inspect the heart. When I’m satisfied with it, I talk to the abdominal transplant team, the liver-pancreas team, and the kidney team.

The brothers de-Graft-Johnson.

Basketball great and hospital founder Djeke Mutumbo is flanked by Drs. deGraft-Johnson and Sara Shumway, vice chief of Cardiothoracic Surgery at the University of Minnesota.

“It’s like a bunch of vultures,” he says in jest. “I’m the cardiac vulture, there’s the liver vulture, the lung vulture, the pancreas vulture. There may be someone there to take the heart, while I take the lungs, or vice versa. It all depends.”

WATCHING THE CLOCK “I coordinate with the abdominal transplant surgeons and ask, ‘How much time do you guys need?’ If they tell me two hours, I call back home and tell them I’m going to cross-clamp the heart and cut it out two hours from whatever time I’m calling them. They know that as soon as I cross-clamp, that two hours from that point, they should have the recipient ready.

I calculate the time it took me to fly from Minnesota to Michigan, which was two hours, the drive to the hospital from the airport, which was maybe 20 minutes, with maybe five minutes to change. Now I add the two hours the other doctors will need and the two hours and 25 minutes before I get back to the airport in Minnesota.

With the heart out of circulation for two-plus hours already when he gets back to the airport in Minnesota, he has fewer than four hours to transplant it. “When I get in the ambulance in Minnesota, I call them and tell them I’m 10 minutes away. An ambulance picks me up on the tarmac, and I zoom all the way to the university hospital, where the team is waiting in the operating room, and the patient’s chest is already open. They don’t take the heart out until they know I’ve landed.”

DeGraft-Johnson with Dr. Denton Cooley, pioneering heart surgeon.

(Bottom) Clay DuVal and family; DuVal received a lung transplant from deGraft-Johnson a little over a year ago.

That’s because doctors have accidents, too. DeGraftJohnson remembers the time a transplant team was killed on the job: “The plane went down in Lake Michigan about two years ago. Several people died trying to save one.” This part of his work doesn’t sit well with his wife, Latifa, he says. She’s a doctor, too, but practices family medicine with both feet on the ground.

“When I fly, I call my wife a lot to give her peace of mind,” deGraft-Johnson says, “because when this Michigan team crashed, (newscasters) said a ‘U of M transplant team crashed,’ and she thought University of Minnesota, not University of Michigan. I can’t tell you the stress that brought into my family.”

It shook him up as well, and for the next few flights he was on edge. The father of three young boys, he worried about crashing and not being there for his family. In time the anxieties eased, but to be safe, he says, “Ipray when I get on a plane, and I pray when I get off.”

Though he stays in constant contact with his crew,

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miscommunications happen. More than once, he’s returned to the airport in Minnesota and found no ambulance waiting to take him back to the medical center.

One time he had no choice but to call 911. “A Minnesota state trooper responded. He picked me up from the tarmac and rushed me to the hospital. That was my first time riding in a police car, and I hope my last.”

In some ways being a cardiovascular surgeon seems ohso Bond, James Bond: the chartered flights, the people to chauffeur you around, the women—and men—who sit by the phone, waiting for your call. But in other ways, it’s a hard-knock life.

“When it’s time to do a transplant, you’re operating nonstop,” says deGraft-Johnson. “You’re doing great things, but your body doesn’t like you at that point.

Your sleeping patterns become irregular because the whole process is unpredictable. There are no bathroom breaks, no nothing.

“It’s a whole process of training your body, like running a marathon or doing the Tour de France. You’re expected to function, [even if you] haven’t slept in two days. If somebody needs a transplant in the middle of night, or they come into the ER with multiple gunshots, I don’t clock out and go home.”

Although it’s difficult to predict when deGraft-Johnson will pull out his old kit bag and head off on another mission, he finds that summer, when people play full out in the heat, and winter, when they play full out in the cold, translate to his field’s high seasons. “Winter puts [people] in snowmobiles or in other sports, which poses risks,” the doctor said only weeks before Natasha Richardson’s fateful fall.

ROOTS OF A DREAM DeGraft-Johnson and his older brother, John, who is also a cardiovascular and thoracic surgeon, grew up in Ghana, West Africa. As children, the younger sibling recalls that people frequently died of preventable illnesses. “You know there’s a big problem when our ex president [Hilla Limann] dies on the way to the hospital in the back of a pick up truck because he couldn’t get proper care. Can you imagine President Clinton dying in the back of a pick up truck?” deGraft-Johnson asks.

The desperation and urgency around the need for good health care in his homeland created in him “a spark, something in me that wanted to pursue a career in medicine and make a difference.” He dreams of returning to his home country to improve the state of medical care.

The name deGraft-Johnson, the doctor says, started with a Dutch man named deGraft, who married an Englishwoman named Johnson. The story goes that they immigrated to Ghana during slavery, where white and black roots mingled. Akin to America’s Kennedy clan,

he says, his ancestors include J.C. deGraft-Johnson, PhD, who wrote the book, The Glory of Africa, and Joseph W.S. deGraft-Johnson, PhD, a former vice president of Ghana.

In the late 70s, however, with political tensions rising within the country, deGraft-Johnson’s father immigrated to Houston, TX. Five or six years later he sent for his wife and middle-school age children. Son, John, later joined the Navy, which paid for his medical schooling.

He became a surgeon and served in Iraq during Desert Storm, before returning to the US to train in cardiac and thoracic surgery at the University of Pittsburgh. He now practices in California’s Bay Area.

Son, Moses, completed his undergraduate work at Texas A&M and Prairieview University. He went on to Ross University School of Medicine in the West Indies, and a general surgery residency at Long Island’s Jewish Medical Center, followed by a Cardiothoracic Surgery Fellowship at the University of Minnesota. He also spent time, of course, at Jamaica Hospital in Queens, NY, where he performed emergency surgery on 50 Cent.

Both deGraft-Johnson brothers graduated as cardiovascular thoracic surgeons around the same time. Not a small amount of ego goes into their work: “I was looking at how high on the surgical chain I could go,” the younger brother admits about the ambition that drives him. “Being a heart surgeon is like being on the varsity team. Everybody else is on the junior varsity team.”

It takes nearly a decade of education and training after medical school to become a surgeon who is licensed to operate on the chest area. “You can’t be a heart surgeon without being a general surgeon first,” deGraft-Johnson says. “You go through college for four years, four years of medical school, general surgery is five to seven years, after that its cardiothoracic training for another three years.” Now in his mid-30s, he’s performed between 50 and 60 successful transplants.

He still remembers his first time. He was alert, but not afraid. Though he admits, with a laugh, that his sphincter muscles were unusually tight. He’d watched his older brother do the procedure, and as he followed in his sibling’s footsteps, he thought, What a gift God has given me to allow me to perform this miracle. He saw the target area on the patient, went in and pulled off the job without a hitch. “I was so ecstatic,’ he says of the feeling afterwards. “I called my mom, and then I called my brother, and he said, ‘Yeah, yeah, whatever’—probably because he’s the older brother, and I’m the little brother. But now he calls and asks me for advice.”

As the father of three, Michael, 6; Matthew, 4; and Gabriel, 10 months, the surgeon is especially sensitive to cases involving children. Recently he traveled to Chicago to procure a heart from a 16-year-old girl who was murdered. continued on p. 62 ABILITY 29

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f they can’t get you on health, the folks at the AdDRESS Your Heart Campaign intend to get you on vanity.

Over the years, everyone from former First Lady Laura Bush to actress Jane Krakowski have twirled in red frocks as a part of the American Heart Association’s efforts to bring attention to the prevalence of heart disease in women.

The slinky dresses are gorgeous, but the statistics are not: One in three women have heart disease. About 43 percent will die from it, and 63 percent of those who die suddenly from the condition had no previous symptoms, says Elizabeth Somer, a registered dietician with a master’s degree in community health.

“I hope I can help educate women of all ages about the importance of knowing their risk factors and living a healthful lifestyle,” Krakowski says.

Pretty dresses, okay. But Campbell’s soup?

“Eating soup once a day, especially broth based soups, fills a person up,” say Somer. “And they’re less likely to overeat.” Even with a big bowl of the hot stuff, you can consume 150 fewer calories a day, she adds, which could lead to a pound of weight loss per month. The nutrionist recommends adding extra veggies to the pot as their water, fiber and protein content help to fill you up. “It’s a perfect mix for weight loss,” she adds.

“I love talking about heart disease,” says Somer, “because it is entirely within your control. There is an outrageously high risk, but the vast majority of people can get it under control, if not avoid it altogether.”

If you’re eating soup from a can, check for the American Heart Association’s seal of approval, also go for the low saturated fat and reduced sodium varieties.

While it’s a worthy goal, too many women are dying now. The sobering statistics provoked Krakowski, who plays Jenna Maroney on the Emmy-winning sitcom, 30 Rock, to take an active role in promoting prevention.

As you may have guessed, soup is only a part of the answer. Somer, who is the author of nine books including, The 10 Habits That Mess Up a Woman’s Diet and Age-Proof Your Body, says that we need to eat more than the five servings of fruit and veggies currently recommended. She’s talking eight a day:

“I’ve been an advocate for women’s heart health since I learned that heart disease is the No. 1 killer of women,” she says.

Onboard with the AdDRESS Your Heart campaign since 2007, she stepped out again recently to strut the catwalk in three dresses fashion designer Nicole Miller created for the cause. Supporters went to a website and voted for their favorite style; for each vote Campbell’s Soup gave $1 to the American Hearth Association’s Go Red movement. A dress called ‘Red, White and Seamed’ won, and at the recent Women’s Day Red Dress Awards, Krakowski stepped out in it.

“All three dresses that Nicole designed are amazing, but she and I both liked the [runner up] ‘Stars, Stripes and Soup’ dress the best because its Campbell pop-art images are so fun.”

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The Heart Truth campaign, sponsored by the National Heart, Lung, and Blood Institute, introduced the Red Dress as the national symbol for women and heart disease awareness in 2002. The Go Red campaign followed in an effort to continue to raise people’s consciousness around heart health, as well as to nudge women to make lifestyle changes.

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“Americans are having a heck of time getting enough fruit and veggies,” she says. “They’re getting about four, but they need to double that. And [nutritional lightweights] potatoes and iceberg lettuce are their No. 1 and No. 2 favorites.”

Fruits and veggies are not only loaded with antioxidants, but also feature that dynamic duo: fiber and water. It’s impossible to be overweight if one is mostly eating fruits and veggies, Somer asserts. This kind of diet can help keep weight gain, high blood pressure, dementia and aging in check.

Yet, even eating soup, fruit and veggies is not the Holy Grail, especially if you follow that with vegging out on the couch and cuddling up to the remote. Exercise six days a week is recommended, says Somer, but she suggests that

newcomers can begin exercising 10 to 15 minutes a day, and work their way up to an hour.

Already skinny? You’re not off the hook, either: The lean set is also at risk for heart disease if they have a high percentage of body fat.

Fat or skinny is less of an issue than the fact that people still tend to think of heart disease as the bastion of men, “Women really need to learn about their risk factors,” says Krakowski. “Using fashion (helps) women take notice.”

This is critical because so much research on heart disease has been done only on men, says Somer, and it’s a misconception that anything found to be true about men is also true for women, as if women are just smaller versions of men.

“Those assumptions are quite false,” the health advocate warns. “Our symptoms are different, our risk factors are different. Women are not at all like little men, and the medical profession downplays the risks for women.”

Take symptoms for example, while men may get a sharp pain in the chest, or pain radiating up and down one arm, women’s heart disease symptoms include indigestion, abdominal discomfort, and a general feeling that something is not quite right. But because these symptoms could be associated with other conditions, a

woman may delay seeking treatment and die.

“We’re so scared about breast cancer statistics, but heart disease is over the top,” Somer says. “So many women may be affected by heart disease and die before they ever get cancer.”

Many of the lifestyle choices that lead to heart disease begin in childhood. Eating a high fat diet and/or living a sedentary lifestyle as a youth can set one on a collision course: “We’re now seeing risk factors for heart disease in children nine years old; they look okay on the outside, but they’ve begun to have clogged arteries, elevated blood sugar levels. They’re setting up a style of eating that’s going to be hard to break.”

Diseases that we’re dealing with now were almost unheard of back during the hunter-gatherer phase of our evolution. If we go back to a diet closer to the one we had when human species evolved: extra lean meat, nut, seeds—you can almost eliminate the risk for heart disease, Somer advises.

“In three or four generations, people have gone from vigorous active lifestyles as farmers and laborers. They didn’t sit at a desk all day long, they were up at the crack of dawn, making their own biscuits, gathering their own eggs. They ate very little processed food ABILITY 31

Since, 2007, actress Jane Krakowski has been a supporter of the Go Red Movement to encourage women to learn the surprising facts about heart health.

because they grew the food themselves. They had lower life expectancies, but they were dying of influenza, infection and tuberculosis—things that we easily can avoid these days.”

For the current generation, stress factors heavily into the equation. We’re under enormous amounts of pressure, which also can lead to heart problems. As an antidote, Somer suggests meditation and, well, more exercise.

“No one seems to be able to live beyond 120, but I think that we can all push our life expectancy closer to that.

People don’t fear dying as much as they fear losing their independence,” she says. “Who wants to live to 120 in a coma or incapacitated? You want to stretch those middle years and be vibrant and passionately actively involved with life at 85. If you do more to protect yourself, the more likely you are to get there.”

by Pamela K. Johnson

RISK FACTORS for HEART DISEASE High blood pressure This increases your risk of heart attack and stroke.

Smoking It increases your risk of developing coronary heart disease to two to four times that of nonsmokers. Smoking is considered to be a major preventable cause of stroke.

High cholesterol The higher your total blood cholesterol, the greater your risk of coronary heart disease and stroke.

Physical inactivity Lack of exercise increases your risk of coronary heart disease and stroke.

Obesity or excess weight Excessive body fat, especially around the waist, makes you more likely to develop heart disease or have a stroke.

Diabetes This increases your risk of heart disease and stroke, especially if your blood sugar is not controlled.

There are other risk factors as well. Talk to your doctor about how age, race and heredity may affect your risk for heart disease.

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ith her riding skills and a slew of wins, Ashley Fiolek is bringing women’s motocross racing out of the shadows and into the spotlight. At 18, she’s well on her way to changing the face and deepening the pockets of her growing sport.

The first woman to ever grace the cover of the industrypopular Transworld Motocross magazine, she’s won 13 Amateur Youth Championships, been featured in Rolling Stone, and was the 2004 America Motorcycle Association (AMA) Youth Motocrosser of the Year. She went on to win the overall title at the Women’s Motocross Association Championship in her rookie year, and became the first deaf person to win an American Motocross Association National Championship.

In our last issue, we caught up with the rising star at a track in Lake Elsinore, CA, where she, her dad, and her mechanic, Cody Wolf, were visiting from Florida for a promotional Honda event. In this issue, ABILITY Magazine’s Chet Cooper, a wannabe motocrosser, continues his conversation with Team Ashley. They talk about how they take their show on the road, Ashley’s start as a motocrosser, and the moment her parents realized that their daughter was deaf.

Chet Cooper: So Ashley comes home from the hospital.

How did you discover that she was born deaf?

Jim Fiolek: When Ashley was born, we had no idea that she was deaf. We found out two years later, when she wasn’t communicating. We were making a lot of noise, but got no reaction. And then we spoke with her doctor about having her tested. The doctor wanted to wait until she was two. Finally, her pediatrician tested her and said that she was spoiled, and that this was wrong and that was wrong, but never anything about her being deaf.

So we went home to Michigan for a couple of months and went to the university there. That’s when we found out that Ashley was profoundly deaf. They also said that she was a candidate for a cochlear implant, but we just preferred to learn sign language. We thought the cochlear implant would be her decision to make in the future.

CC: In the deaf community, of course, there’s controversy about whether to use the implant or not.

JF: Lucky for us, when Ashley was very young, my mom knew some people who were deaf who invited us into the deaf world. We learned then that the cochlear implant wasn’t something they wanted; it was what the rest of the world wanted for them. So we decided that ABILITY 35

this was the way she was given to us, and we would let her make that decision in the future.

CC: Ashley, have you thought about having a cochlear implant, now that you’re an adult?

Ashley Fiolek: No, I never wanted a cochlear implant. I was born deaf, and I love being deaf.

CC: Tell me about school?

JF: We wanted Ashley to be around more deaf people. Initially, she was in a school of 600, but only 24 of the students were deaf. So we started looking around the US, and said let’s go somewhere warm where Ashley— who had started riding—can ride all year. So we ended up in St. Augustine, FL, where she went to a school for the deaf for about five years.

CC: All the students were deaf?

JF: Yes. CC: What did you think about the difference between public school and deaf school?

AF: In Michigan it was small, a few deaf people. I only had a few friends. But then I moved to Florida, and everyone (at the school) was deaf. So there were a lot of people, and I could talk with everybody. I didn’t have to worry about, “OK, he’s deaf and she’s hearing.”

CC: Your ex-boyfriend, the really mean one-AF: (laughs) CC: Did he sign before meeting you?

AF: No. I met him and he knew that I was deaf, but when we were dating I taught him how to sign. He learned. I can teach anybody.

You know what’s funny? I go to the podium and they want to hand me the mike, and I’m like…? But a lot of my friends who were shy at first, all sign now.

CC: Have you thought of a career in acting?

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AF: (laughs) No. CC: You should think about it. I’m sure at some point a producer is going to ask you to do something with motorcycle riding in a role.

AF: I just did a Honda commercial, and it was really a cool experience.

CC: I haven’t seen it yet. Is it airing? What did you do for the commercial?

JF: The commercial was about Monday morning and returning to work. The concept was: “What do you tell your buddies at the water cooler on Monday morning?”

It had Ashley on a hill with her bike with a voiceover saying, “What would you pay to be awesome?” Then the commercial shows her riding.

CC: Do you ride?

JF: (to Ashley) Do I ride? (laughs) You might want to ask Cody, Ashley’s mechanic. I always ask him, “Can I ride one of the bikes?” and he says, “No.” I go, “Why not?” He says, “Because you’re gonna do two laps and you’re gonna cause me three hours worth of work.” And he’s right. I get about two laps in, and I’m worn out. It’s too dangerous for me.

We went riding with Travis Pastrana a couple years ago, and I ended up crashing. Actually, Ashley was crashing at the same time I was crashing, except she got up laughing at me, and I wasn’t laughing.

CC: You’ve got to wear the right stuff. How did you get your first bike?

JF: I grew up racing, motocross. When Ashley was three-and-a-half, we bought her her first bike. We had taken her to the races and she liked it, but she didn’t actually start riding until she was about seven. We lived in Michigan and we came to Florida on vacation, and she said, “Take my training wheels off, I’m gonna ride this thing.” We rode through the woods for hours. She had been riding with me and my wife on the front of our motorcycles through the woods since she was two years old. We would go for hours.

CC: She was collecting the bugs?

JF: Right. She was blocking for us. We would go for hours and then stop, and she’d want to keep going. I think that’s where she got a feel for motorcycles.

CC: So you have a better appreciation than most of what she’s gone through to reach the level she’s achieved.

JF: I do have a good appreciation, but she’ll tell you I always want more. I’m always looking to get her to that next level.

CC: You’re a family and a team, and you’re already making history, breaking through the ceiling of what women have accomplished in the sport and with sponsorships.

It’s one of those sports that has been so male-dominated.

JF: Yeah. When Ashley made the decision that she was going to turn pro and not return to amateur racing— because of the two sanctioning bodies at the time, you could do both—she made the decision to stay at the professional level and not take money and opportunity away from little girls who were coming up. The way she did that, the statements she made about being a professional, and the requirements (she set) for people who wanted her to represent their company were done very professionally. Sponsors now know that she does her job on and off the track.

She’s had a chance to change women’s experiences in motocross, with the help of a lot of other girls such as Steffi Laier, who was the champion for many years.

They didn’t back down and say, “We’ll ride for a free pair of pants or goggles or something.” Instead, it was more like, “If we represent your company and we represent you the right way, you should pay us the way you do the boys.” That’s what they’ve been able to change.

CC: Getting an audience and drawing attention to the riding helps you connect to sponsorships... At one point, Ashley, when you broke your wrist, did you have a hard time signing?

AF: Not really. I didn’t hurt it that bad.

JF: The time she broke her wrist and her collarbone, that was bad, yes. Then she just used her mouth.

CC: Cody, when did you start signing?

Cody Wolf: I started learning to sign around December 2006, because I knew that in January 2007 I was going to be working with Ashley for the first time. So I just kind of did what I would say is the normal thing, went to a bookstore, got a sign language book, and then just started the process by learning the basic alphabets and numbers.

CC: On the road, how much of the time are you with Ashley, working on the bike?

CC: Tell me about your racing career.

JF: It was OK. I wasn’t good enough to be a professional, but I was able to qualify and go to some of the amateur nationals.

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CW: Any time there’s something riding-related, we’re together, unless I go for a vacation with family or something. But when Ashley’s riding, I’m there to help with any mechanical issues and to maintain the motorcycle.

CC: Did you know of each other before you started working together?

CW: I met Ashley in Oklahoma in 2006. It was at the amateur nationals; she and her dad and her granddad were there. The friend that I came down there with was actually good friends with the Fiolek family, so we met each other on that trip and have been friends ever since.

CC: Are you hired through Ashley or through Honda?

CW: Through Ashley. She brought me with her when she went to Honda. I was very thankful for the opportunity.

CC: So you’ve upgraded, then, too? You’re now at a different level.

CW: Absolutely, yeah, with Ashley going to the factory team. That makes me her factory mechanic, working on factory motorcycles right there next to the other factory boys and the other factory mechanics. It’s a great privilege.

Baby Steps: Young Ashley proves that the early bird gets the corporate sponsorships

CC: Nice! Say thank you to Ashley!

CW: Yeah, I thank Ashley a lot. She knows it!

JF: Yeah, but you don’t say it enough to me! (laughs) We always pick on each other. It’s a brutal environment.

CW: Yeah, there have been one or two times when I’ve walked away crying. (laughs) CC: It’s good to have a happy team.

CW: We’ve built a great relationship. We work well together. We travel together and try to help each other out when we can, whether it’s motorcycle-related or not.

CC: Do you ride at all?

CW: I rode up until the time that I started to work for Ashley. The summer that I met her, I fractured two vertebrae in my back. That’s when I realized I wasn’t ever going to make a career out of racing, and then I was blessed with this opportunity. So I was kind of like, I’m over it.

CC: Anything you can tell us about Ashley that we don’t know?

JF: She’s really just a goofy kid. She has a lot of friends, and we always have people at our home, staying (with us) if they’re training. They make videos like crazy. I don’t know if you know Sarah Whitmore. She’s a pro motocrosser who has won a lot of racing championships. She was with us for two or three weeks. We found this thing on YouTube, a video of those two having a pillow fight. Ashley’s just a goofy, goofy kid. ashleyfiolek.com ABILITY 39

resource, and provides access to accurate, user-friendly and relevant disability-related information. Aside from the resource guides, there’s expert opinion on early intervention and family support.

The site offers a forum for training UCP staff and industry professionals, and access to outreach materials for the larger, caregiving community.

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hen parents are told that a son or daughter has a developmental delay or a disability, it can be a lonely and confusing time. Suddenly they are faced with a new set of challenges, as well as anxiety about the obstacles their child will likely encounter in the future.

That’s why United Cerebral Palsy (UCP) is pioneering an initiative called My Child Without Limits (MCWL), which provides parents of newly diagnosed children, five years old or younger, with critical information, while connecting them to a vital social network of parents.

Those parents who have been assisted by UCP’s new program report that the information and advice offered

by MCWL affiliates has represented a significant turning point for them, helping them to fully understand the diagnosis and to appropriately care for their child.

Evidence shows that early diagnosis, early intervention and targeted education are critical to a child’s ability to reach his or her full potential. But when first presented with an initial diagnosis of a disability, parents, caregivers and professionals may turn to the Internet for information, which often proves inadequate to meet all of their needs.

To fully support parents of children with developmental delays or disabilities, UCP designed MCWL to be the premier resource. The program aims to enhance a child’s development by providing one-stop, disability-related health information to families and caregivers. MCWL’s portal brings together reliable information, allowing families and caregivers to become knowledgeable partners in the lives of their children. The program bridges the information gap by linking comprehensive Internet resources, social networking and regional training.

Web-based Resources The website is a comprehensive early intervention

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Social Networking An online community creates a sense of support for families facing challenging emotional and psychological times. This moderated online group will facilitate connections between caregivers and family members through an open-source platform of integrated newsletters, blogs and discussion boards. The moderated format helps to ensure that blog and discussion board entries contain accurate information and that community rules are followed. Families and caregivers can share experiences, information, and practical ideas to empower them to make informed decisions. Additionally, the online community is an ideal forum to cultivate new advocates. It further unifies disability voices to promote real change.

Both the website and the social networking components of MCWL are designed to work independently or in conjunction with each other to ultimately empower families and caregivers of children with disabilities with the necessary education, resources and support needed.

“My Child Without Limits will be the one-stop shop for parents and professionals, and will help children with disabilities start achieving a life without limits at an early age,” says Stephen Bennett, UCP president & CEO. Every day, the organization’s affiliates serve more than 176,000 children and adults with disabilities and their families—the majority of whom have a disability other than cerebral palsy. MCWL furthers the national UCP initiative to create a Life Without Limits for people with disabilities by reaching them as early as possible and helping them and their families create their own vision of the future through self-determination and selfempowerment.

The expert resource portion of the My Child Without Limits website will launch soon. In the meantime, you can join the online community today. mychildwithoutlimits.org ucp.org

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A

s a little girl, Kristi Yamaguchi watched her big sister, Lori, try ice skating, so of course she had to try it, too. For young Kristi, who was born with club feet, it also proved to be great physical therapy. Though Lori gave the sport the cold shoulder after a couple of months, Kristi kept at it and went on to win gold in the 1992 Winter Olympics. Today, she’s the mom of two girls herself, and at work on a cool concept that will serve the needs of all children.

Chet Cooper: Tell us about your Always Dream foundation.

Kristi Yamaguchi: I founded it in 1996. I was inspired by the Make-A-Wish foundation to make a positive difference in children’s lives. We’ve been helping out various children’s organizations, which is rewarding. Our latest project is a playground designed so that kids of all abilities can play side by side. That’s our focus now.

CC: Are you working with a playground company, or are you doing this on your own?

KY: We’re doing this on our own, but we’ve also partnered with the city of Fremont, where we’re building the playground. Fremont is my hometown. They’ve given us the land within the Central Park area to build this playground, so they’ve been amazing to work with.

We work with an architect who specializes in equipment designs for children with disabilities. So it’s a unique playground, and we’re excited about it.

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Future Fun Site: Always Dream Foundation Playground Rendering

CC: There are companies that manufacture accessible playgrounds, so you might want to look at what they’ve done and learn from their successful and not-so-successful experiences.

KY: Our architect has done a number of these playgrounds before, and she knows the different manufacturers, so we felt pretty confident that we could do this ourselves.

CC: That’s good. What about fundraising?

KY: We’re currently fundraising. It takes a while. This project is three or four years along from when we started. We hope to break ground soon. We had a dinner about a year-and-a-half ago in October to raise funds for the playground, and we’re planning another event, called Dancing the Night Away. Proceeds will go to fund the playground as well.

CC: Has anyone from your organization reached out to the Kirk Douglas Foundation?

KY: No, we haven’t. We’ve just been trying to raise funds on our own. Maybe we should look into that.

CC: He told me that his main focus is playgrounds.

They put a lot of money into them and into parks in the greater LA area. I don’t know their geographic boundaries, and the Bay Area may be too far away, but I’d suggest you contact his office and let him know what you’re doing. They seem to be pretty sincere, and it might be a good fit.

KY: We’ll look into that, thank you.

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CC: So, does the dancing event connect in any way with your stint on Dancing with the Stars?

KY: We’re inviting some celebrities from season six— the same show I was on. Obviously, my professional partner, Mark Ballas, has been invited. We’ve penciled everyone in, but things are subject to change depending on people’s professional schedules. We’re planning a Friday evening of dinner and a short dance show afterwards with maybe four or five of us couples doing some routines, and then inviting everyone in attendance to come onto the dance floor and learn simple dance steps and maybe to dance. We plan to have a band.

CC: So you’re bringing your experience on the show into other aspects of your life.

KY: Wherever I go, people ask me about my experience on the show. So there’s a tie. Because of the visibility and the appeal of the show, people are still really interested in it, so I thought, why not? If that’s what people want to talk about, then why not get my friends from the show involved and create a fun night of entertainment.

CC: Did you feel that you got more exposure from the show than from the Olympics?

KY: It’s different. I think my generation remembers me and knows me as a skater and an Olympian. But I think with the younger crowd-people who watch reality TVthey know me from the show. So my two worlds are coming together. Although my generation knows me as a skater, they’re certainly interested to see what I was doing on Dancing with the Stars.

CC: While we’re on the subject of reality TV, what did you think about Scott Hamilton appearing on The Apprentice?

work together to engage volunteers with disabilities in building the playground. (See related story, p. 15) KY: Yes absolutely. We need to stay in touch.

KY: I thought he was an awesome candidate. He’s such a smart guy and he has great vision; he knows how to rally the troops and stay positive. (See related story, p. 50) He’s also a great businessman. I thought he would do really well, and I think he could have done well, but one fault maybe is that he’s too nice of a guy. As far as playing the game goes, he’s not as cutthroat as some of the other competitors.

CC: Let’s go back to the rink for a moment: At what point did you and your family say, “There’s something here with this ice skating thing?”

KY: Yeah, it’s not like him to be mean, or put someone else down to make himself look good. I thought he would last longer, but in the second episode he was fired.

KY: I loved it from the beginning. I was practicing before school and things started to get more serious. By junior high, it was like, “All right. My family’s invested a lot of time and money into the sport. Is this something I want to continue to do?” Because the training time and juggling with school becomes an issue. So at that point I started competing and representing the state of California, and continued to progress. I definitely wanted to keep at it, so my parents said, “All right, as long as you keep your grades up and you’re giving it 100 percent.”

CC: That’s what I heard. It was surprising.

CC: Can you remember the first time you skated?

KY: I was shocked.

KY: I don’t remember the first time specifically, but I do remember one of the first times that I put my skates on.

My mom had to pretty much hold me up to get around the ice. She came on the ice with me. She had her armsor hands-tucked under my armpits and was holding me up. I thought I was dragging her. I felt like I was going really fast, moving my feet, taking us both across the ice. I just remember that feeling of freedom.

CC: He just wants everyone to get along and doesn’t have that aggressive, take-somebody-down-to-win attitude.

CC: Would you do a show like that?

KY: Probably not. Dancing with the Stars was right up my alley: performing for fun. You’re putting yourself out there and learning something new, and yet it’s not cutthroat competition. It’s survival of the fittest, but in a nice way. With The Apprentice, you need to be calculating, and that’s not my forte.

CC: Did your mother skate?

CC: How do you spend your days? Do you go to an office?

KY: We do have a foundation office in Oakland, CA. I go there once a week or so to check on things. A lot of times it’s fulfilling requests for other charities or auctions. But I’m constantly in touch and on the phone with Jim Adler, my chief operating officer, who runs the foundation. And lately Dean Osaki, who’s putting together our fundraising event. So there’s constantly something going on and projects to move forward.

We’re growing and expanding what we do, and we hope to get this playground kicked off. It’s in a great location, right across the street from the California School for the Deaf and Blind, and across the street from a Bay Area Rapid Transit station in Fremont. We’re hoping that it brings in kids from all over the Bay Area.

CC: When you build it, will you have volunteers come out to work, or will it be strictly a construction company?

KY: We do have a construction sponsor, Swinerton, and right now we’re still working out the details of their involvement. But I think once we get going, there’ll be quite a few volunteers to help us get this done.

Am I fabulous, or what?

CC: ABILITY Awareness and Always Dream should ABILITY 45

Kristi and Mark Ballas celebrate their Dancing with the Stars victory. (Opposite page): All the right moves.

KY: No, actually my older sister tried skating for a couple months, took lessons, but it wasn’t really her cup of tea. She didn’t love it. As the younger sister, I wanted to try it, too. So I tried it, and ended up loving it.

learn to get up quickly so no one runs over your hands.

CC: You were born in Fremont?

KY: Actually Hayward, CA.

CC: The family just goes out to have a little fun, and look what happens?

KY: Pretty much.

(They’re sister cities.)

CC: So you’ve been living up there in the Bay Area all your life?

CC: So then families should be warned about this?

KY: (laughs) Well, sometimes you can’t help where dreams sprout up from, you know?

CC: For some reason, I tend to think that people who become skaters live near a lake that freezes over a lot, and that they are out there on their own. I don’t typically picture a person going to a rink.

KY: I think I got hooked after seeing a local ice show. I was like, “Wow! That looks like a lot of fun!” I fell in love with the costumes and the music. It was a combination of things.

CC: You’re closer to your parents now, so you’ve got good babysitters nearby, right?

CC: I grew up in New Jersey, and we had a lake behind our house, so we skated all the time. Whenever the ice became safe, we were all out there, playing ice hockey.

It was one of those things, as you said, that gave us a sense of freedom: You’re out there just sliding along, feeling great. I’ve always felt that that could have taken a lot of children to another level. But when we did eventually go to rinks, it seemed a little bit more dangerous, because people flew around, out of control.

CC: Do you do any mountain biking?

KY: Oh, yeah, it’s more crowded. But it wasn’t bad. I guess the rink is how California kids learn. (laughs) You 46

KY: I’ve actually lived away from home for the last close to 20 years, since I graduated from high school. I moved up to Canada and trained there through the Olympics, and then pretty much after the Olympics I was on the road touring for 10 years. When I got married, I lived wherever my husband was playing. So this has been the first year that I’ve pretty much been here in northern California. It feels good.

ABILITY

KY: Oh, yeah, I definitely take advantage of that.

KY: Not right now. I’m hoping maybe when the kids get a little bigger, we can get them out there.

CC: I interviewed Bruce Jenner years ago, and I asked him about his workout routine after retiring from the decathlon. He doesn’t touch weights; he doesn’t do anything except mountain bike. And I thought, “That’s strange, how can mountain biking be that much of a workout?” And then my friends invited me up to the Oakland hills, and we rode a couple of

Photos of Dancing with the Stars © American Broadcasting Companies, Inc.

Working the high tops and sequins on Dancing with the Stars

times, and I thought I was going to die.

KY: Yeah, I know. It’s a real workout.

CC: My friend got behind me and actually pushed me up the steeper hills with his hand while he rode beside me. (laughs) I was thinking, How is he able to do this?

And I thought I was in decent shape. I surf, ride motocross, play chess—I guess I wasn’t doing enough— maybe I need to play more chess. So be forewarned.

Still, I think you’d like it, and it’s so beautiful out there...

Anyway, tell me, did you ever rollerskate?

KY: For fun. The usual rollerskating parties, and birthday parties here and there.

CC: As you started to progress in representing California in ice skating, did you actually start seeing the possibilities of traveling around the world and going to the Olympics?

KY: I did. Once I made it to the sectional championship, which is the whole West Coast, my next goal was to make it to the national championships. As a novice, I qualified for the nationals, and ended up second. At that point, I was thinking, “OK, hopefully next year, when I’m a junior-level skater, I can go to some international competitions.” There are a lot of steps along the way, but certainly by the time I was 13 or 14, the Olympics was the big dream.

CC: Anything that surprised or delighted you as you traveled?

KY: Traveling a lot as a youngster and as a teen, I met kids from other countries. One of my first international competitions was in Sarajevo, Yugoslavia. There was a

whole ordeal just getting there, first of all. At 14, my first time in a then-Eastern bloc country, seeing soldiers on the streets with automatic weapons, seeing a tougher life opened my eyes to a lot of things.

Meeting some of the other skaters was a joy. I had so much fun trying to communicate with them, and getting to know them and their likes and dislikes. Some were very interested in Western culture and others seemed very Western and very much like myself. You realize that despite all the differences and the different ways that we’ve been brought up, ultimately we’re in this world together. I think that was a good thing to learn early on.

CC: When you start traveling internationally, you realize that there are so many similarities, but you also realize that with television, movies, etc., America has so much influence. I bet there are people all around the world who have watched Dancing with the Stars, and are seeing you all over again. As you were saying, the younger generation is seeing you as a different person than the prior generation. Do you have children?

KY: I have two girls, three and five.

CC: Skating yet?

KY: For fun. They’ve been on the ice several times.

We go once or twice a month, just to play. No formal lessons or anything yet, but we’ll see. If they really, really ask for it, I’m open to it. Otherwise, I’m not going to push the issue.

CC: Do you think they have an idea of how talented their mother is on the ice?

KY: They know that mommy skates. They’ve both been ABILITY 47

Kristi: Hanging with the kids

to many ice shows, and they’ve seen me skate. So I’m not sure if they think that’s any different than any other mom. To them, it’s no big deal to see mom on TV. Maybe it will be when they get a little older. I don’t think they realize that I’ve won an Olympic gold medal; I don’t think they know what that means yet.

KY: East of Oakland, in a town called Alamo. This is our home base. I’m here year-round now, and my husband is currently playing for the Anaheim Ducks, so he’s in Anaheim. Are you calling from Anaheim?

CC: What does your husband do?

KY: Yeah, I thought I saw 949. That’s downtown. So he’s been down there, and my daughters and I have been going back and forth quite a bit this whole season. It looks like they might be done. They’ve been struggling on and off throughout the season.

KY: He’s a hockey player in the NHL. He’s played for the last 17 years.

CC: Yeah.

CC: Did you meet on the ice?

KY: We did. He was actually on the U.S. Olympic team in ‘92 as well, so we shared that experience, although we didn’t know each other then. We met a few years later at the grand opening of the General Motors Place arena in Vancouver, where I was skating and his hockey team was playing. So, it was an ice event that brought us together, and we got to know each other, and the rest is history.

CC: How did that happen? Somehow you got to sit close to each other? Somebody introduced you? Who said, “Let’s go and have some coffee?” How did that happen?

KY: He came up and introduced himself. He said, “I was on the ‘92 Olympic team for the U.S. as well, and I just wanted to say ‘hi’ again.” As an Olympian, you feel a connection with someone who’s been on the same team. So after we were reintroduced, we were talking about the Olympics in Albertville, France, and the different people we remember from that Olympics.

It was just conversation. A few weeks later he was in the San Francisco Bay area. We kind of had our first little ice cream, I guess. (laughs). We went out for ice cream, and then I went to the game, and we just kept in touch. I was on the road at the time, and he was playing and pretty much on the road, too. So it was good, being forced to talk on the phone and to get to know each other that way.

CC: Now you both live in Oakland?

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CC: Switching subjects… As you decided to build playgrounds, how did you choose children with disabilities as part of your outreach?

KY: Well, we’ve reached out to kids with disabilities before. One of our board members, who’s been with us for several years, is a quadriplegic. So we’ve looked at the different organizations and tried to help everyone.

Disabilities was high on our list. Our board member loves Hawaii, so we said, “Let’s go to Hawaii and work with some kids out there,” and we did an Olympic-themed summer camp for four days. We had kids with disabilities paired with a buddy who was an able-bodied person, and we did fun Olympic-type activities. The point was to ingrain in the kids that disability or no disability, we’re more alike than we are different. By working together and just being there and celebrating each other, you get so much more out of life. Between our foundation, the counselors and the kids, it was life transforming. In those four days, we all experienced something incredible.

The following summer we did a leadership weekend in Hawaii with the kids, and I was inspired to create a playground, which is more permanent.

CC: But it’s not in Hawaii!

KY: I know. We looked all over the California Bay Area. The situation with the city of Fremont stepping forward and partnering with us made the most sense.

CC: You could take that concept to other parts of the country as well, couldn’t you?

KY: Absolutely.

CC: Any ice activities?

KY: No ice. We did go skating the following year, when we had the leadership camp. We took all the kids to the one ice rink in Honolulu and had a fun day of skating.

Kristi and friends at an Olympicthemed summer camp in Hawaii

CC: Are you still going to do camps?

KY: It’s on our list, but for now we’re focused on the playground. Maybe once it’s built next year, we’ll do another camp. I definitely want to, because I think so many people got so much out of it.

CC: The kids were kids who lived in Hawaii?

KY: Yes. Most of them were underprivileged kids, as well. Everyone felt like family by the end of four days.

CC: You’ve heard that some of these cruise line ships have skating rinks on them?

KY: Some of my friends actually do some of those shows. It’s just amazing. But they said it’s difficult, because when you’re in rough waters, you don’t know whether you’re gonna go forward or backward on the ice.

CC: Oh, wow! So if you’re doing any jumps, and the ship is going to be pitching one way or the other, you wouldn’t know where the landing is going to be.

KY: That’s what they say. You hit the ice a lot sooner, and sometimes you’re singing and because of the tilt, you start moving across the ice. But they don’t do the huge jumps that you see in competition. The ice is really small, too. But it’s good entertainment.

CC: It was Olympic-themed, so you had different sporting activities that were somehow connected to different Olympic sports?

CC: Have you ever been on a cruise?

KY: We did a broad range of things: relay races with the kids, kite making, kite flying, crafts. And the kids were divided into groups. Each group picked a name for themselves and a team color. We had a little opening ceremony where everyone marched in with their team and their lead counselor. They made up a song that they sang at the opening ceremony and then, at the end of the camp, everyone received a medal. Actually, Scott Hamilton had come in with his wife Tracy, and they were part of that final day where we awarded all the kids with medals.

CC: I thought I wouldn’t like them. But I do. It surprised me. There are so many fun activities. It’s amazing.

CC: That sounds like fun.

KY: They designed and created a team flag as well.

CC: Was there a closing ceremony, since you created a parallel to the Olympics? Did Scott come out and award the medals?

KY: Yes, he came out and awarded the medals. We also had a final dance with all the kids, to recognize them all. The kids had all different types of disabilities.

Some were cognitive. Some were physical. Some were both. We definitely had activities that everyone could participate in.

KY: No, I haven’t.

KY: My parents have both gone, and they love it. I like the whole idea of an all-inclusive travel experience. You don’t have to pack anything special; you have everything you need on the ship.

CC: I’ve done Alaska, which is incredible. I’d recommend Alaska to anybody. These excursions that you do, like getting on a plane from the bay and flying out over the glaciers and seeing how really large they are, and then going to a place where they barbecue salmon right off the river… It’s all so cool. Alaska is an incredible place.

Yamaguchi: It sounds like it. I’m hoping maybe when the kids get a little bigger, we can get them out there.

CC: You haven’t tried it yet?

KY: No, I haven’t. My parents keep saying, “Why don’t you do one of those shows and we can all go on the cruise?” Maybe, some day. alwaysdream.org

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pointed to your picture on the cover of our magazine and asked, “Photoshop?”

(A software program that can enhance pictures.)

SH: (laughs) And you confirmed that there was a little Photoshop involved. You guys go ahead, make me look good.

CC: To be fair to you, the image that we were given wasn’t the best quality, so some touch-up was needed. It was a cover story, so we wanted to make sure you were ready for your close-up.

SH: That’s cool.

CC: Tell me about how you got roped into the NBC reality show, The Apprentice.

SH: As Bill Cosby said about having children: It seemed like a good idea at the time. (laughs) It came about because a long time ago, I met a guy at a party in LA who’s one of the casting directors for The Apprentice. He thought that it would be fun for me to do it because I’m involved in a lot of charity work, and on the celebrity version, the winner gets money for their favorite charity.

He thought I could get that out on national television and have some fun at the same time. I’ve met Donald Trump on many occasions and liked him. So I thought it would be an enjoyable experience to go in and have some fun with him, his kids and [his executive] George, while meeting some new people and interacting with them in ways I’ve never interacted with people before. So this caught me at a good time, and I said, “Sure, I’ll do it.”

W

hen we spoke with Scott Hamilton a few months back, he was just emerging out of a dark place, where he’d faced the challenges of a brain tumor diagnosis. The former Olympic figure skater, who took home the gold at Sarajevo in 1984, has had a checkered medical past: When he was two, a serious illness stopped his growth for several years.

Then, as a young man, he was treated for testicular cancer. But this time we come back to Hamilton not because of anything in his medical charts, but because he took on an intriguing personal challenge that involved television, his favorite charity and a fellow named Donald Trump.

Chet Cooper: What’s the latest with you, Scott?

Scott Hamilton: I’ve been back on the ice the last couple of weeks, working with renewed intensity. It feels pretty good, like I’m getting my body back.

CC: I’ve told the story a few times now about how you went on stage at the California Pituitary Conference, 50

ABILITY

CC: The pop culture experience is intriguing to me.

How many times in your life do you get the opportunity to be fired by Donald Trump? (laughs) That’s one thing you can check off your list.

SH: I was blown away by the show’s boardroom or “war room,” as they call it. It’s really an interesting design; the location access to the boardroom is pretty amazing. They run a tight ship. I’m impressed by how it all works.

CC: Have you had a background in entrepreneurial endeavors before?

SH: Yes, but not in a broad sense. I built Stars on Ice during a period when I had no job. Ice Capades was being taken over by a new owner, and he wasn’t familiar with how to market male figure skaters. At that point I had been the go-to guy at Ice Capades for two years.

But the new owners had that old-school mindset that women skaters are the only ones who can sell tickets to ice shows. So they let me go, and I had to come up with a new way to make a living. Skating was what I knew the best, and so I was able to be entrepreneurial in the

sense of building a tour that’s lasted 23 years now.

been doing fundraising for their literacy programs the last couple of years.

CC: You did something right.

CC: What charities did you choose for The Apprentice?

SH: Yes, I think so. A lot of it was just hard work and team building. You don’t do anything overnight. You have to build people’s trust and start to understand how they can best work together. I have a servant-leader management philosophy where you put everybody else’s needs in front of your own, and build them up so you have a strong base. That’s always been the way that I’ve tried to do business: bring in really talented people, let them do their work, and at the end of the day, I’ll get the best product.

We were very successful in doing that. The first few years were very lean, and we were trying to make ends meet the best way we could. So it was a bumpy road.

We probably broke even the first four years, but by about year five we started turning a decent profit.. And then in year six we had a spike in business because we had a very good Olympics, with Kristi Yamaguchi (See related story, Page 42) winning and Paul Wylie taking a silver. When they came on board, the tour took off. It was amazing.

CC: Finding the right team is always the difficult part. If you don’t have the finances, how do you gather that team?

SH: And how do you survive the years when you’re losing money? Fortunately, we had IMG, International Management Group, a gigantic, worldwide company that promotes and manages sports and athletes behind us. Their television entities became very profitable because of their figure skating relationships in their winter sports division.

This was due in no small part because they were able to bring in clients around whom they could build television shows. So Stars on Ice was a great touring vehicle to bring skaters on board and give them a salary and a relationship with a broader American audience. From that, we were able to be very, very successful.

CC: At any point, did you work with a nonprofit, causerelated concern within the company?

SH: Yes, we always had a charity. During our first years we were sponsored by Discover Card, and they brought the Make A Wish Foundation with them. So for many, many years proceeds from the tour went directly to Make A Wish Foundation. I think at one time we were their biggest single donor. They gave us awards and recognition. Everywhere we went, we created awareness for local Make A Wish chapters and did a lot of nationwide publicity.

When they departed, Target took over and we raised funds for Target House at St. Jude’s Children’s Research Hospital in Memphis. We loved that. And now Smucker’s is the corporate sponsor, and they brought the Boys and Girls Clubs of America with them. We’ve

SH: It’s my C.A.R.E.S. Initiative (Cancer Alliance for Research, Education and Survivorship) at the Cleveland Clinic. I chose them because I want to fund different research programs for cancer research. And an arm of the Cleveland Clinic Foundation, the Taussig Cancer Institute. That’s who I chose to fundraise for.

The Apprentice rules and guidelines on charities are very specific and they don’t want any conflicts of interest. They want to find real charities that celebrities are personally involved in and have a real strong affinity for, whether it be their own foundation or something that affects them directly. Last year, we learned a lot about food allergies from Trace Adkins. I know that there are a lot of really wonderful causes that were put out in front of people that we never would have known existed without The Apprentice.

CC: Tell me a little bit more about The Apprentice. How much can you talk about, given that it hasn’t finished its run yet?

SH: I can tell you who was in the cast and that it was an extraordinary experience. But I can’t go into detail.

Aside from me, the guys were Jesse James, Herschel Walker, Brian McKnight, Andrew Dice Clay, Clint Black, Dennis Rodman and Tom Green. It’s a pretty eclectic, wacky cast. We’re all so phenomenally different, and everybody’s got their agenda. And then on the ladies’ side, it was Joan Rivers, Melissa Rivers, Brande Roderick, Claudia Jordan, Natalie Gulbis, Tionne Watkins, Annie Duke and Khloe Kardashian. The women’s team is almost as diverse as the men’s, almost. The men’s team is just insane. None of us have anything in common. It was crazy, but interesting.

And then once you get into the shooting, Mr. Trump kind of becomes Mr. Trump. You don’t have any access to him, but his kids are great. Again, just to be in his world for that time was a lot of fun. Honestly, my biggest fear going into it was that I was going to somehow misrepresent my family, my faith, myself, and just get so caught up in the game and competition, that I might show a side of myself that was repulsive. (laughs) You know? A lot of the conditions surrounding the tasks and the boardroom and how the whole scenario works is very, very, very intense.

CC: Did you think since you’d met Trump a few times, that you might have a little bit of a leg up?

SH: No, because it comes down to performance. I was always trying to be seen as an asset in his world and represent his brand. He puts himself out there. And as this was a situation where I was a guest in his house, ABILITY 51

Photo: Ali Goldstein/NBC

where I was “an employee” of his, I wanted to treat him with respect. So my feeling throughout was whatever he asks of me, I’m going to do my best.

Hamilton takes on Reality TV

In the very first boardroom I learned that when he asks you a question, you don’t duck it.

When I first got questioned, I gave an evasive answer: “Well, that’s not my style.” Mr. Trump called me on my answer: “No, I’m asking you a question. Answer my question.” That’s when it clicked in: Oh, yeah, that’s right, I work for you; I have to do everything you tell me I have to do. So all right, I’ll answer the question.

CC: (laughs) I’m not telling!

SH: I can’t. They make you sign a 26 page, non-disclosure agreement, because they have so much to lose by word getting out about how this went or who did what or who got fired or who advanced. There’s too much at stake for the show, so they’re very specific about participants not discussing any details. It’s strict. Nor would I want to be the guy who gives it away.

CC: So what I have in my notes here is that you told me that Dennis Rodman won and that he got in a fight with Joan Rivers and punched her in the nose.

CC: That show has an ‘eat or be eaten’ aspect to it.

SH: Wow! Were you there? (laughs) SH: True, and my instincts aren’t to throw anybody under a bus or to get into that survival of the fittest mode and use someone as a human shield. Yet the process of the game kind of dictates that. If somebody didn’t perform well, you had to expose them. And that really is not my style. My way has always been to nurture talent and try to bring out someone’s best qualities in a situation. But this was a whole different world of do-or-die. You get to play another day by making sure somebody else takes the bullet. (laughs) That was the odd part of the experience.

If you go behind the scenes of the show, however, you know that Trump couldn’t create an empire like that without team building. You want to have talented people in the right places. Part of The Apprentice story is that he’s looking for that one right person. But with Celebrity Apprentice the winner doesn’t get a position at the end of the day. It’s about being the last man or woman standing. It’s more like Survivor. It’s more or less, Well, I didn’t get fired. That’s my reward.

CC: So everyone gets an equal amount for their nonprofit?

[Note: Turns out Hamilton was voted off the show in the second episode.]

CC: (laughs) But now they’re dating.

SH: They created a love child, and he’s carrying it!

CC: (laughs) That’s really funny! Do you think you’re going to be in touch with any of the people that you met who were not necessarily in your world before?

SH: It’ll be interesting to see. We’re all going to be at the finale. That’s a big deal. That’ll be fun. Other than that, we could exchange Christmas cards and things. I don’t know. Because you competed with them on the show, you see everybody in The Apprentice in a different light than you would if you were just hanging out.

So I had dinner with (one of the contestants) last night.

I liked him before The Apprentice, and we’re going to remain friends after. So that’s kind of neat. I’ve spent a little time with Melissa Rivers before, and I’d met Joan a couple times, but it’s not like they’re in my Rolodex or anything. [The Celebrity Apprentice] contestants share the stage for awhile, and then we all go back to our lives.

CC: Where do you live now?

SH: Nashville.

SH: Not exactly. You “earn” money for winning a task.

The task may be marketing, running a business or setting up a shop. Whichever team does the best job, according to the client, wins the task and earns money for their charity. But in the end, the team member who raises the most money actually takes it all. So you may win $20,000 or $25,000 towards your charity. So a lot is at stake.

CC: So I guess you were able to get some money to the Cleveland Clinic.

SH: I’m not at liberty to discuss anything! (laughs) 52

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CC: Any country western friends in your Rolodex?

SH: Lots. It’s a small town; you get to know everybody.

CC: Anything else we should cover here today, Mr. Hamilton?

SH: Not right now. I’d better sign off before I slip and give anything away. nbc.com/the-celebrity-apprentice clevelandclinic.org/cancer/scottcares

Thomas Chappell, MD 213 City Place Drive Santa Ana, CA 92705 Tel 714.569.1316 EChappell@ThomasChappellMD.com ThomasChappellMD.com

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any athletes with disabilities have succeeded on the professional playing field. Probably in no other professional sport is this truer than in Major League Baseball.

Few fans are aware of the number of these players who have succeeded in the majors. This may be because of the athletes themselves, who either downplayed or hid their disabilities, because they considered them to be just the hand they’d been dealt, according to Rick Swaine, author of Beating the Breaks: Major League Baseball Players who Have Overcome Disabilities.

For some, however, their disability was impossible to hide, and became a source of motivation, instilling in them a fierce desire to succeed and prove the “naysayers” wrong.

Jim Abbott has perhaps done the most in recent years to change people’s perception of how baseball can be played and who can play it. Born with one hand, he had a successful 10-year Major League career primarily with the Angels and Yankees, and was the 15th player to ever make his professional debut without spending a day in the minor leagues.

As a pitcher for the then-California Angels, he wore a right-hander’s glove at the end of his right arm. After delivering a pitch, he quickly transferred the glove to his left hand so he could field any balls hit back to him. In that first 1989 season, he won more games as a rookie than any other previous player without Major League experience, winning 12 games with a 3.92 ERA. His disability inspired him to work harder than most.

“As a kid I really wanted to fit in,” Abbott says on his

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website about growing up with a disability. “Sports became a way for me to gain acceptance. I think this fueled my desire to succeed. I truly believe that difficult times and disappointments can push us to find abilities and strengths we wouldn’t know existed without the experience of struggle.”

Abbott led his college team, the University of Michigan Wolverines, to Big Ten titles in his freshman and junior years. As a member of Team USA, he pitched a complete game seven hitter, leading the United States to the gold medal in a 5-3 victory over Japan at the 1988 Summer Olympics in Seoul. Perhaps the most famous highlight of his career was throwing a no-hitter for the New York Yankees at Yankee Stadium in 1993.

“I was very fortunate to be surrounded by people who treated me just like the other kids on the team,” says Abbott about his efforts as a youngster to be taken seriously as a ballplayer. “My growing up was learning to do things a little bit differently. There were just so many people who took the time [to help me]. ‘All right, let’s figure this out. I see potential in this guy.’ I really was the beneficiary of that spirit.”

Although Jim Abbott has been the most visible recent baseball player with a disability to play in the majors, many others preceded him. Mordecai Brown, nicknamed “Three Finger,” was a successful pitcher with only three fingers on his right hand. Due to a farm-machinery accident in his youth, he lost parts of two fingers on his right hand and acquired his famous nickname. With various three-fingered grips, he learned to use his disability to his advantage and became one of the most elite pitchers of his era.

“Three Finger” Brown’s most productive years were with the Chicago Cubs from 1904 until 1912. During those years, he won 20 or more games six times and was part of two World Series championships. At the time, New York Giants manager John McGraw regarded Brown as one of the two best pitchers in the National League. Christy Mathewson was the other.

Browns ended up losing, however, and American League president, Will Harridge, voided Gaedel’s contract the next day.

Best known for his tenure with the St. Louis Browns in 1945, Pete Gray had been right-handed until he lost his right arm after he slipped while riding on a farmer’s wagon at age six. For love of the game, he learned to bat and field one-handed, catching the ball in his glove and then quickly removing his glove and transferring the ball to his hand in one motion, similar to Abbott’s fielding style.

William Ellsworth “Dummy” Hoy was a center fielder who played for several teams from 1888 to 1902 and is noted for being the most accomplished deaf player in major league history. In Hoy’s day, many people thought there was a connection between inability to speak and lack of intelligence, so people who couldn’t hear or speak were often called epithets such as “dumb” and “dummy.” Though Hoy even referred to himself as “dummy,” in keeping with his times, he was one of the most intelligent players of his era, and may have played some role in the creation of hand signals for out and safe calls. For his all-around contributions to the game, there is a movement to support his election to the Baseball Hall of Fame.

Gray played center field for the Browns in 77 games, batting .218 with a .958 fielding percentage. He could not hit breaking balls, however, because once he started swinging he couldn’t stop. Still, Gray’s success became an inspirational example for returning servicemen who had been disabled during World War II. He can be viewed in newsreels of the time visiting army hospitals and speaking with amputees to reassure them that they could look forward to a productive life.

Edward Carl “Eddie” Gaedel was another player who couldn’t hide his obvious differences. Though his at-bat is considered a stunt, at 3’1, Gaedel is the only person of short stature to play in the majors. He has an on-base percentage of 1.0, walking on four pitches in his only plate appearance on August 19, 1951. Bill Veeck, owner of the St. Louis Browns, did put Gaedel up to bat as a publicity stunt to attract fans to the last place team. The

For other players, it wasn’t quite as obvious that they were playing with a disability, yet they still made a significant impact on the game.

Like William Hoy, Curtis John Pride played the game deaf. The former outfielder spent most of his career with the Atlanta Braves, Montreal Expos or Detroit Tigers. He lost 95 percent of his hearing at birth from rubella, and was one of the first deaf players in modern league history. In an 11 major league career, he batted .250 (199-for-796) with 20 home runs and 82 RBI in 421 games.

He is currently head baseball coach at Gallaudet University, which is considered to be a world leader in liberal education and career development for deaf and ABILITY 55

hard-of-hearing undergraduate students. When he is not playing or coaching baseball, Pride and his wife, Lisa, are actively involved in the Together With Pride foundation, which supports and creates programs for hearing impaired children that focuses on the importance of education, learning key life skills and gaining self esteem.

Most baseball fans are well aware of Hall of Famer Lou Gehrig, about whom the movie Pride of the Yankees was made. For five decades, he held the major league record for most consecutive games until Cal Ripken broke the record in 1995. For his durability, Gehrig, who played first base for the Yankees, was nicknamed the “Iron Horse.” He also gave amyotrophic lateral sclerosis (ALS) a nickname, Lou Gehrig’s Disease, and probably played the last couple of years of his career with the onset of the disease.

At the midpoint of the 1938 season, Gehrig’s performance began to diminish. Although his final 1938 stats were respectable, it was obvious that he no longer possessed his once-formidable power. In the summer of 1939, he was diagnosed with ALS, a terminal disease that degenerates nerve cells in the brain and spinal cord.

On June 21, the New York Yankees announced Gehrig’s retirement and proclaimed July 4, 1939, “Lou Gehrig Appreciation Day” at Yankee Stadium.

That day, there was a doubleheader against the Washington Senators, and ceremonies were held on the field between games. That’s when Gehrig made his “Today I consider myself the luckiest man on the face of the earth…” speech, which was immortalized in Pride.

Ron Santo also battled a health condition: diabetes, which he carefully concealed for most of his career.

A nine time National League all-star third baseman with the Chicago Cubs in the sixties, he batted .300 and hit 30 home runs four times each. Santo is the only third baseman in Major League history to post eight consecutive seasons with 90 runs batted in (RBI), and was the second player at his position to hit 300 career home runs.

When he was an active player, Santo feared that if it became known that he had type 1 diabetes, he would be forced to retire. Because the methods of regulating diabetes in the 70’s were not as advanced as they are today, Santo used his moods to gauge his blood sugar levels. If he felt his blood sugar was low, he would snack on a candy bar in the clubhouse. Years later, his disease progressed and eventually necessitated the amputation of his lower legs.

As society and laws have changed to accommodate people with disabilities, some major leaguers have been more forthcoming about their conditions. In fact, many have used the media attention they received as a 56

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springboard to raise money and awareness. Some of these players have received awards for their spirit and perseverance.

Dave Dravecky, a former player for the San Diego Padres and San Francisco Giants, fought a highly publicized battle with cancer during his athletic career. In 1988, he underwent surgery to remove a cancerous desmoids tumor in his pitching arm. A year or so later, he returned to the field, pitching eight innings to defeat the Cincinnatti Reds in a game that was widely covered in the national media. Five days later, however, in a game against the Montreal Expos, Dravecky’s humerus bone snapped, ending his career.

More recently, Boston Red Sox pitcher Jon Lester was diagnosed with a rare form of non-Hodgkin’s lymphoma, a blood cancer. One of the top left-handed starters in the game, he was diagnosed in 2006 and underwent off-season chemotherapy treatments at the Fred Hutchinson Cancer Research Center in Seattle.

At the end of that same year, Lester’s CAT scan showed no signs of the disease. Then, less than two years after being diagnosed with lymphoma, he pitched the final game of the 2007 World Series, and in May 2008, threw a no-hitter against the Kansas City Royals.

To honor Lester’s comeback from lymphoma, Boston Baseball Writers’ Association of America honored him with the 2007 Tony Conigliaro Award. Then, coming full circle after his treatment at the Hutchinson Center, on October 7, 2008, Lester was named a finalist for the 2008 Hutch Award, given to the Major League player who “best exemplifies the fighting spirit and competitive desire” of Hutchinson, the former MLB pitcher and manager whose life was cut short by cancer at age 45 in 1964. On November 10, 2008, Lester was announced as the award winner.

Jim Eisenreich has arguably brought as much attention to Tourette Syndrome (TS) as Dravecky and Lester have to the importance of cancer screenings. In the 80s and 90s, he played for the National League Phillies and Dodger. TS, a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations, caused him to briefly retire between 1984 and 1987 to undergo treatment. In 1993, his first year with the Phillies, he enjoyed one of his best years, batting .318 and helping the Phillies to win the National League pennant.

In 1990, Eisenreich was the first player to receive the then-newly instituted Tony Conigliaro Award, given annually to a major league player who best overcomes an obstacle and adversity through the attributes of spirit, determination and courage in his lifetime. Eisenreich now dedicates his time to helping improve the lives of children with TS.

Making it to the major leagues with a disability or

continuing one’s career after the diagnosis of a serious

health condition are phenomenal achievements reserved

for a select few. Beyond talent, it takes determination

and hard work.

Many of the athletes profiled here went on to become

spokespersons to raise awareness for their disability or

conditions, including Jim Abbott, the former pitcher,

who now works for PITCH (Proving Individuals with

Talent Can Help) with the Department of Labor’s Office

of Disability Employment Policy. They collaborate on

several initiatives encouraging businesses to hire people

with disabilities. Their campaign raises awareness about

the talent people with disabilities have to offer.

“Hey, anything is possible,” says Abbott. His advice

applies to any profession or endeavor: “You need to be

very open minded to new solutions. Be comfortable

with trying different ways of getting things done, and be

strong enough to ignore the attention that being different

might bring.”

“I worked hard,” he went on to say. “There are times

when I wonder if I could have gotten a little bit more

out of my left arm and there are times when I think

maybe I got everything I possibly could out of it.”

Abbott’s baseball success and message have inspired

many, including Chad Bentz who made history in 2004

with the Montreal Expos by becoming the second pitch-

er in the majors, after Abbott, to play with one hand.

Bentz fields and catches with his glove the same way

Abbott and Pete Gray did. After Bentz met him as a

freshman in college, Abbott became his mentor. Bentz

currently plays for the Cincinnatti Reds.

“Never allow the circumstances of your life to become

an excuse,” Abbott advises. “People will allow you to

do it. But I believe we have a personal obligation to

make the most of the abilities we have. The focus has to

remain on what has been given, not what has been taken

away. It is the only choice.”

“My goal ... was to be the best baseball player I could

be,” says Abbott. “That’s how I would like to be

remembered. I think being constantly put into a certain

category can be frustrating. However I am very proud to

serve as an idea that you can rise above categorizations

and expectations of others.

by Renne Gardner

jimabbott.info

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I

was born with sickle cell anemia, a hereditary blood disease that deprives normally round cells of oxygen, and causes them to collapse into a “sickle” shape. This results in restricted movement of blood through vessels, and further deprives the body of muchneeded oxygen. The condition is chronic, lifelong and causes periodic attacks of pain, as well as strokes and damage to internal organs. In my case, both parents passed the sickle cell trait down to me and my sister.

(Actually, it can be passed down if only one parent has it.) And yet I have resolved to live a life that is not defined by my illness.

T-shirts, and drove to the church pick-up point. The buses were there, motors running, and children waited in lines, eager to board. I jumped out of our still-running car, said “goodbye” to my mother, and ran towards the person holding a sign-in sheet for our group. I gave them my name and they motioned me towards the correct bus. I hopped up the three bus steps.

I was introduced to this ticking bomb inside my body in the 1960s when I was a child. Always sickly and skinnier than most kids, I still played outside, kicking balls and climbing trees, sometimes into the night. I had a strong will, even if my body didn’t always back me up.

When I came down with a cold or the flu, I often felt an ache deep in my bones. Sometimes, during the night, I felt pounding pain in my legs or arms, and all I could do was cry. I’ve gotten used to the pain, however, and over time, have developed a high tolerance to it.

When we finally pulled up to the camp grounds, we immediately dropped off our suitcases and rushed to the mess hall for lunch. Smells of ham, turkey, mashed potatoes, green beans and hot rolls wafted through the room. After such a long ride, I was hungry, and the food was laid out like a banquet.

When I was growing up, there was not only no cure, but there were few treatment options. Doctors could help ease the pain, but the weakness that sickle cell caused was something I had to learn to live with.

Sometimes I could literally hear the pounding of blood trying to flow through my limbs. I listened, as my body tried to keep up with the demands of my sickling blood, and my blocked veins and arteries groaned from the lack of flow. All I could do was moan.

My favorite escape from this reality was my annual summer camping trip with my sisters. I loved it because I met new friends and experienced wonderful adventures. This particular summer, we were going to a new camp, sponsored by a Catholic church and managed by nuns. It was at 6,000 feet in the mountains, and I was so excited.

The morning started off like any other first day of camp: We packed one suitcase full of shorts and another full of 58

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The bus ride along oak-lined winding roads with river views was so exciting. I felt the weight of the world lift from my young shoulders and flow out of the window into the wilderness. I was happy and pain-free.

After that delicious meal, we went to our cabins to settle in and get ready for the rest of the day’s events. But while unpacking, I threw up. I lay down on my bunk bed and threw up again. In fact, I couldn’t stop. The camping staff carried me to the nurse, who laid me down in her office. Unfortunately, my condition got worse. I began to shiver. Finally, I blacked out. Just an hour or two after my arrival, camp staff had to call my mother and tell her to come and take me home.

This was my introduction to the disastrous combination of high-altitude and sickle cell disease. The higher the altitude, the thinner the air. As a result, my blood could not get enough oxygen to function normally, which caused me to have a sickle cell “crisis.” Luckily, the nurse knew to get me out of the high-altitude quickly, so I would not sustain damage to my internal organs.

Later that year, my mother discovered that there was a newly formed sickle cell clinic at a local hospital that planned to conduct a study in the Los Angeles area on people who had the condition. My sister and I were included. Each week, kind and knowledgeable doctors greeted us, took our blood, talked to us about pain, and told us why we were experiencing it. For the first time

in my life, I could tell someone how it felt, and they understood. They finally helped me identify the cause of my pain, and taught me how to manage it. It was comforting to hear that it wasn’t my fault.

As a teenager I began to develop a new relationship with my body through dance. I was introduced to it by my older sister, who was a modern dance major at UCLA. One day, she turned on some music and started to sway and move in rhythm with the beat. I was mesmerized by her mastery of her own body. I loved music, but had never seen anyone move to music with such grace and beauty. Each beat seemed to have a meaning, and each change in tempo a purpose.

I discovered I could use my body to tell the stories of its struggles. Dance gave me the assurance that my body could take care of itself. Beyond hopelessness and pain, dance offered me hope, strength, love and respect. Moving and stretching also helped me find peace.

While there is still no cure for sickle cell, universities and other research centers around the world continue to study the disease. I don’t know if I’ll see a cure in my lifetime, but I will dance on.

A Closer Look

L

et’s break down the components of sickle cell anemia. Anemia is a general term meaning abnormally few red blood cells.

There are a few different types of cells in the blood: The white ones, for example, which fight off infection, and the red one—typically disc-shaped—that attach themselves to oxygen molecules called hemoglobin to carry oxygen to the cells that make up our organs.

AD

Due to an inherited gene, the sickle cell anemia hemoglobin molecule is defective. The defective hemoglobin causes several problems. While normal red cells, which are made constantly in the bone marrow, last a few months, the abnormal sickle cell red blood cells live only a few days. The shorter lifespan of the red blood cells leads to anemia.

The sickle shape of the red blood cells poses another problem.

Because they’re malformed, they don’t flow well through blood vessels. They tend to clump, which results in poor circulation and inadequate oxygen to the organs. The resulting symptoms are myriad: fatigue and shortness of breath. Headaches, chest, arm and leg pain are often common. Complications may include stroke, blindness, lung damage, and multiple organ failure. Infection can be a problem, too.

Sickle cell patients are often hospitalized at least once and sometimes several times a year. Blood transfusions and intravenous hydration are usually used to relieve pain and improve blood flow.

Occasionally, the disease is cured with bone marrow transplantation. Researchers are now exploring gene therapy as a possible cure for the disease.

P. Allen Jones sicklecelldisease.org

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ACROSS 1 Disability rights leader who won a Paul Hearne award, Stephanie _____ 4 Congressman and author of the ADA, Tony 10 Successful talk show host who fought MS, Montel _____ 12 Chief sponsor of the ADA, Tom 13 Cincinnati or karate?

15 Took five 17 Opportunities 18 Cincy player 19 Average (2 words) 22 Country singer who was a battered mother and succeeded in life despite that, Naomi ___ 23 “I did it __ way” Frank Sinatra 25 Public hanging?

28 “Cool!”

29 A ___- do person 31 “Accidental Comedy” star who had a severe childhood quadriplegic and campaigned for people with spinal cord injuries (2 words) 34 Type of TV 35 “___, myself and I” Beyonce 36 Ballpark fig.

38 “Children of a Lesser God” star, who plays a deaf girl (first name) 39 16th US President who fought depression 42 Bring ___ the bacon!

44 Without company 46 “Music Within” writer, Livingston 47 One of the corporate sponsors of the AAPD Leadership Gala 49 Movie, “____ Brokovich” 51 “The Pianist” director 52 Colony insect 53 Going to happen 54 Environmental activist, Begley 55 Shadow’s opposite

DOWN 1“ER” star who campaigned for people with disabilities in the field of acting, Anthony ____ 2 Egg sections 3 Oakland player 5 Happening!

6 Picked up 7 Made of a certain wood 8 “Curb Your Enthusiasm” star who campaigned for those with United Cerebral Palsy 9 Person in a mask 11 Sparked 14 Type of pine tree 16 Drops on blades 20 Famous cooking author who campaigns for people with Rheumatoid Arthritis (2 words) 21 Alternative word 23 Public servicing campaign to help young people achieve their full potential (goes with month): National ____ (goes with 43 down) 24 Chinese basketball star who held a charity auction for underprivileged children which raised almost a million dollars 26 Look after yourself! (2 words)

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answers on page 63

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continued from p. 29 “I get to the hospital to procure (the heart) and I’m told that police officers are guarding the patient, because they fear who ever shot the girl doesn’t know she’s dead, and may come to the hospital to finish her off.

“I thought to myself, What kind of world do we live in, and what kind of life did this young girl have that someone would want to shoot her in the head, and then risk being caught by coming to a hospital?”

Another teen he operated on recently died in a snow mobile accident. “I looked at the body on the table, covered with tattoos and piercings,” he recalls. “Based on [the patient] history, she’d had some issues. And I thought, Wow, what problems could she have had?

Another young man was arguing [with his father] while they were traveling in the car, and the kid jumped out at 45 to 50 miles per hour.” Organ donors all.

“But the more hopeful news is that their deaths actually saved other people’s lives.”

In what can be a suprisingly small divide between death and life, deGraft-Johnson finds that people often explore their spirituality. Though he is a religious man, he doesn’t talk about it unless a patient brings it up first: “It’s a defining moment in their life. They could die on the table, and if they want to talk about God, I’m wide open.”

FOUR SEASONS CARE Although deGraft-Johnson and his family are in the process of moving from the Midwest to St. Thomas, US Virgin Islands, he’s proud of the University of Minnesota’s reputation for groundbreaking advances in heart surgery. The late pioneer Norman Shumway, MD, completed his residency and was awarded his surgical doctorate at U of M. He went on to perform this nation’s first heart transplant operation in 1968. When other doctors abandoned heart transplants because of challenges and dangers related to organ rejection, he stayed with it.

Ultimately he moved on to Stanford University, where he advanced the field. Today, one of his children, Sara Shumway, MD, is director of heart and lung transplantation at the University of Minnesota’s Medical Center.

you to walk out of there saying, ‘That’s the best hotel I’ve ever stayed at, and next time I’m staying at the Four Seasons...’ I want to project that into my practice. I want patients who come to see me to leave saying, ‘That was the best doctor I’ve ever gone to.’ ” DeGraft-Johnson befriended a recent patient named Clay DuVal, a graphic artist who just celebrated one year with a transplanted lung. He had a type of nonsmoker’s emphysema.

“I met Dr. deGraft-Johnson the day after the transplant. He had flown to get the organ, and to see it go into me, a live human being, it’s got to be very rewarding for him.”

Before he got his new lung, DuVal recalls: “I was very sick, with shortness of breath. I was on oxygen. I’d lost a lot of weight. But after I had the procedure, I was walking the dog the next day, and riding my bike two weeks later. I’m doing stuff with my kids, who are now 5 and almost 8, that I only dreamed of doing.”

But a few months later, he was at death’s door again.

Late last year he caught pneumonia, owing to drugs that helped his body accept his new lung, but lowered his resistance. He remained in the hospital for two months, where the outlook appeared bleak. On occasion, deGraft-Johnson went to ICU and sat with DuVal’s wife, Rachael, to offer his support and address their fears. Ultimately, DuVal pulled through, and he and deGraft-Johnson sometimes grab a coffee and catch up.

Now everyone can take a deep breath again, especially DuVal, with his new lung.

by Pamela K. Johnson organdonor.gov leukemia-lymphoma.org

Aside from the renown father and daughter surgeons, deGraft-Johnson has high regard for U of M alums C. Walton Lillehei, MD, the pioneer of open-heart surgery who died in 1999, and Earl Bakken, inventor of the pacemaker and founder of the company Medtronic.

DeGraft-Johnson intends to continue the university’s tradition of excellence in his new home. He says he aims to give his patients what he calls ‘Four Seasons’ care: “When you go to the Four Seasons Hotel, they make sure you get the care that you need. They want 62

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Guarav Sachdev, MD and Moses deGraft-Johnson, MD

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