ABILITY Magazine Loni Anderson

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E DITOR - IN -C HIEF Chet Cooper

M ANAGING H EALTH E DITOR Gillian Friedman, MD

H EALTH E DITORS

Larry Goldstein, MD Karl Gross, MD

M ANAGING E DITOR Jane Wollman Rusoff

C ONTRIBUTING S ENATOR Tom Harkin (D-Iowa)

E DITORS

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LETTER FROM THE EDITOR — Rebuild with Accessibility

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SENATOR HARKIN — Embryonic Stem Cell Research

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HUMOR — Cell Mates

C ONTRIBUTING W RITERS Brad Cohen Holly Higgins Donna Carol Maheady, EdD Lisa Wysocky

HEADLINES — iBOT, Drug Therapy and Hurricane Aftermath

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PARALYMPIC MILITARY — Sport as Rehabilitation

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RECIPES — Soups for the Soul

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FRONT OF THE CLASS — Book Excerpt

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TUBEROUS SCLEROSIS — Disease with a Million Faces

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LONI ANDERSON — Smart, Sexy and Speaking Out

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COPD — What Smoking is Really Doing to Your Lungs

P RODUCTION

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ADA UPDATE — 15 Years and Counting

P HOTOGRAPHY

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LAUGHING MATTERS — 6th Annual Comedy Showcase

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NURSING SCHOOL — Students with Mulitple Disabilities

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ABILITY HOUSE — Behind the Scenes of a Smart Home

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RESPITEMATCH.COM — Matching Caregivers with Consumers

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H UMOR E DITORS Jeff Charlebois Gene Feldman, JD

W EB E DITORS

Paul Kim Steve Mikailoglu

A RT D IRECTOR

Behind the Scenes

Kristian Olson

G RAPHIC A RT / I LLUSTRATION Leah Demeter Matt Karwocki Steve Mikailoglu Melissa Murphy Jessee Powell Graphic Fusion

ADA Update

Tony Maddox Photography

SENIOR DIRECTOR Romney Snyder

DIRECTOR OF BUSINESS AFFAIRS John Noble, JD

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WORLD ABILITY FEDERATION— Special Section

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EVENTS AND CONFERENCES—Special Section

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Dear Readers, When President Bush pledged an estimated $200 billion in federal aid to rebuild the hurricane-ravaged Gulf Coast, he also pledged that the reconstruction plan would “clear away the legacy of inequality.” In forecasting what he called one of the largest reconstruction projects the world has ever seen, the president recognized that out of such tragic destruction comes tremendous opportunity—a unique chance to rebuild the right way, addressing the chronic ills of poverty and racial injustice. But what about the ill of inaccessibility?

The online publication Ragged Edge has noted that although 25 to 30 percent of the residents affected by Hurricane Katrina had disabilities, there were no disaster services specifically in place to help people with disabilities. Accessibility in housing, emergency shelter and transportation by and large did not exist. There were no vehicles with lifts available for evacuation. Images from the Gulf Coast evacuation looked eerily reminiscent of the provisions people with disabilities receive in the third world—people who couldn’t walk had to be carried, and entrance to safe havens was often denied. When our nation witnessed at 9/11 the deficit in emergency planning for people with disabilities, disability groups across the nation drafted guidelines to help businesses and governments prepare better for the future. Is this the best that the wealthiest nation in the world can do? Will we similarly fail to learn from the experiences of Katrina?

According to the Department of Housing and Urban Development, people with disabilities in America continue to experience poverty and worst-case housing needs. More than 98 percent of all U.S. housing continues to be designed without provisions for accessibility, despite the fact that more than 80 percent of Americans will need them at some point in their lives. Furthermore, the National Association for Home Builders estimates that it costs about 10 times as much to retrofit an existing home with basic accessibility features, such as a zero-step entrance and a doorway wide enough to accommodate a wheelchair, as it does to build these features into the initial design. Several other countries are far ahead of the U.S. in recognizing accessibility as a pressing issue. For example, Britain adopted universal design standards nearly a decade ago. But in the U.S., laws that require accessibility for even a portion of new construction are frequently disregarded.

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Lack of affordable, accessible housing remains the greatest barrier to community living for people who currently wait unnecessarily in nursing homes and other institutions—about 300,000 Americans, according to the Centers for Medicare and Medicaid. Many who have waited years for housing under existing government programs like Section 8 are now seeing supposedly unavailable housing magically appear for evacuees of Katrina, knocking the original applicants off years-long waiting lists. Why weren’t such resources provided for people with disabilities before the disaster, and what are those long-standing applicants going to do now?

Several disability leaders have appealed to the Administration to take note of the problem. Says Mark Johnson, Georgia representative of ADAPT (American Disabled for Attendant Programs Today), “We understand why people with disabilities were evacuated without their wheelchairs, service animals and caretakers. In an emergency, you do whatever you have to do to get the most people out in the quickest way possible. But now that we are past that first response, FEMA and the Red Cross need to work with the disability community to assure that the needs of people with disabilities are met comprehensively, and that they don’t languish in those institutional settings for years to come.”

Similarly, Lex Frieden, chairperson of the National Council on Disability, has called on Secretary of Homeland Security Michael Chertoff to establish a point person on disability who reports directly to the secretary and interacts directly with the senior leadership team.

Stephanie Thomas, national ADAPT organizer, notes, “Katrina created a visible emergency that represents only the tip of the iceberg of the invisible emergency of poverty and disability services. People with disabilities should not always come last.”

Clear away the legacy of inequality. The absence of provisions for people with disabilities is exactly on par with the type of inequality that the Administration says should be remedied in the rebuilding—now if we could only get it on their radar.

Sincerely, Gillian Friedman, MD Managing Health Editor Do you have an interesting story from your life? Do you know someone who has made an impact in your community? Do you have topics you would like to see in ABILITY? Get involved! editorial@abilitymagazine.com Subject: Getting Involved

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access to the best stem cell lines available, as long as they meet stringent ethical requirements.

Our aim is to pass HR 810 without amendments, which means we can avoid a conference committee and send it directly to the president’s desk. But there’s a problem. The White House opposes this legislation, and powerful Republicans are maneuvering to kill the bill. To that end, they are trying to muddy the waters. They want the Senate to vote on four to six bills, some of which have nothing to do with stem cell research.

EXPAND STEM CELL RESEARCH—NOW! Dear ABILITY Readers, This is an exciting time for millions of Americans who have juvenile diabetes, spinal cord injuries, Parkinson’s and other diseases and disabilities. They have new hope for treatment—and perhaps a cure—thanks to embryonic stem cell research.

Last spring, the House of Representatives passed a bill— HR 810—that would vastly expand the number of stem cell lines eligible for federally funded research. The measure was approved with a strong bipartisan vote, 238 to 194. Today, strong momentum continues to build behind an identical bill Senator Arlen Specter (R-PA) and I have introduced in the Senate.

We have broad bipartisan support from people like Utah’s Senator Orrin Hatch and former First Lady Nancy Reagan. And in a dramatic speech on the Senate floor in late July, Majority Leader Bill Frist (R-TN) announced his support for our bill, explaining that he no longer thinks the Administration’s policies enable scientists to pursue the “truly magnificent, truly remarkable properties” of stem cells taken from days-old human embryos.

Our bill responds to a harsh new reality. We now know that all 22 stem cell lines available under President Bush’s restrictive policy are contaminated with mouse feeder cells, making them dangerous for use in humans.

Since the president announced his policy arbitrarily banning stem cell lines created after August 9, 2001, scientists have made great advances in deriving stem cell lines. Many of the new lines have been grown without mouse feeder cells.

Shouldn’t our top scientists be studying those new lines? We don’t require our astronomers to explore the heavens with 19th century telescopes, and we don’t require our geologists to study the Earth with tape measures. If we are serious about realizing the promise of stem cell research, our biomedical researchers need 8

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Their strategy is to convince senators that instead of supporting HR 810 they can vote for a different bill that promotes alternative methods of deriving stem cells.

They figure if they can peel off enough senators from HR 810, they can keep us from getting the 60 votes we need to stop a filibuster.

Let’s be clear, these alternative approaches are currently nothing but theories. They are hypothetical, speculative and totally unproven. By contrast, we know how to derive embryonic stem cells.

And let me emphasize that none of the additional stem cell lines would require the creation of new embryos.

These lines could be derived from any of the more than 400,000 embryos that are left over from fertility treatments—embryos that would otherwise be discarded.

The choice before us is to discard these leftover embryos as medical waste, or to use them in research to cure disease and save lives. It is the second choice, I believe, that is truly respectful of human life.

Should we pursue the various alternative methods? Of course we should. But it is foolish to impede medical research on existing human embryonic stem cell lines while these more speculative methods are explored.

As I write this, people we love are dying from Parkinson’s disease and ALS. Children are battling juvenile diabetes. These people don’t have 10 years to wait to see if alternative methods pan out. They need help now.

At a public rally supporting HR 810, actor Michael J. Fox—who has Parkinson’s disease—was asked what advice he would give to President Bush on HR 810. His answer was, “Carpe diem.” Seize the day.

For millions of Americans, this issue is a matter of life and death. They can’t wait any longer for our top scientists to realize the full potential of stem cell research. So this fall we intend to move as urgently as possible to pass HR 810 in the Senate. We hope the president will come to realize that our approach is ethical, moderate and just plain common sense.

Sincerely, Senator Tom Harkin www.harkin.senate.gov

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Cell Mates

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was sitting in my car, stuck in traffic— not an uncommon circumstance in the land of smog and sunshine. I glanced over to the car in the next lane. There was a middle-aged woman at the wheel. Beside her in the front passenger seat was a teenage girl, presumably her daughter. Both driver and passenger were talking on their cell phones— but in all likelihood, not to each other.

The cell phone is one of the great techno toys of modern times, at least according to my service provider. They even offered me text messaging service. Imagine, not only could I carry on a phone conversation while I cut off the speeding Lexus in the next lane, I could also send messages in text, in between fixing the CD player and sipping my Mocha Java Venti. And in a final touch of mobile efficiency, the full-color camera accessory (included at no extra charge) would allow me to photograph any bumper that dared get in my way—I could run the plates later.

But let’s return to our mother and daughter stuck in traffic on Wilshire Boulevard. I speculated that perhaps the mother was gently chiding the girl about the fact that her grades have been slipping as precipitously as the jeans on her bare midriff. The daughter, ever anxious to be reminded of the stellar grade point average of the entering freshman class at the University of California at Berkeley, rolled her eyes, wondering when her mother would finally remove herself from the daughter’s freshly liposuctioned posterior.

Sensing the sentiment, Mom replied, “FINE.” The daughter was thinking of a two-word phrase that, coincidentally, also started with the letter F. At this point the conversation had hit a lull. Mom reached into her purse for a stick of gum (or perhaps a stick of dynamite). The daughter sprang back to action, grabbed her cell phone and tried to call her best friend. Sadly, her friend was talking to another friend about a boyfriend problem of epic proportions. Daughter then left an urgent text message: CALL ME. Meanwhile, Mom had called Dad, but Dad was busy golfing, trying to close a business deal and suck up to his boss at the same time. (The concept of multitasking was alive and well.) Mom quickly typed in a few lines to describe her daughter’s litany of treachery, ingratitude and academic incompetence. At the other side of the car, the daughter text-messaged the important highlights to her friend: MOM BEING A JERK ABOUT GRADES, HEY THESE JEANS LOOK CUTE ON ME. From this scenario, the value of our cell phones and their fancy options becomes obvious. If mothers and daughters were forced to wait for land lines to seek solace for their complaints, they might just strangle each other right there in rush-hour traffic.

As for me, I’ll sip my Starbucks with one hand and steer with the other, thank you, and let my calls go to voice mail...another techno wonder, courtesy of my cell phone provider.

by Gene Feldman ABILITY 9

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iBOT 4000 HIGH-TECH WHEELCHAIR

DRUG THERAPY NEW DNA TEST IMPROVES RESULTS

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hrough most of medical history, doctors have had to determine the correct dose of medication for an individual patient by trial and error.

Because of genetic differences in the level of enzymes that activate and break down medications in the body, some patients need very high doses to get good effect, whereas others develop side effects at unusually small doses. A new blood test recently approved by the Food and Drug Administration (FDA) will help doctors personalize some drug treatment decisions for individual patients.

The Invader UGT1A1 Molecular Assay, manufactured

by Third Wave Technologies, detects variations in a gene that produces the enzyme UDP-glucuronosyltransferase.

This enzyme is active in the metabolism of certain drugs, such as Camptosar (irinotecan), a drug used in colorectal cancer treatment. Variations in the UGT1A1 gene can influence a patient’s ability to break down Camptosar, which can lead to increased blood levels of the drug and a higher risk of side effects or toxicity.

The Invader assay joins a growing list of genetic tests available to physicians to personalize treatment decisions, including the Roche AmpliChip, used to individualize dosage of some psychiatric, cardiac and chemotherapy drugs, and the TRUGENE HIV-1 Genotyping Kit, used to detect variations in the HIV virus that make it resistant to some anti-retroviral drugs.

“This test represents the power of DNA-based testing to provide individualized medical care,” said Daniel Schultz, MD, director of the FDA’s Center for Devices and Radiological Health. “These technologies can significantly improve patient management and reduce the risk of ineffective or even harmful drug therapy.”

The Invader assay is intended to aid a physician in making individualized patient treatment decisions, but it is not a substitute for a physician’s judgment and clinical experience. Other important factors that may affect dosing should be considered, such as the patient’s liver and kidney function, age and other medications.

THIRD WAVE Molecular Diagnostics www.twt.com

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Independence Technology, a Johnson & Johnson company, has launched the iBOT 4000, a new version of its already-popular iBOT Mobility System, which in just two years has become the Cadillac of power wheelchairs. The iBOT 4000’s combination of innovative functions allows users to climb curbs; go up and down stairs; raise themselves to standing height to address others at eye level; and travel with ease and stability over sand, gravel, grass and other uneven terrains.

Based on the designs of inventor Dean Kamen, the iBOT 4000 utilizes the patented iBALANCE technology, an integrated combination of sensors, software components and multiple computers that work in conjunction with motion sensors called gyroscopes. This electronic balance system is custom-programmed and calibrated to each user’s center of gravity, continually realigning and adjusting wheel position in response to subtle movements. When people reach forward to shake hands, their iBOTs move with them; when they lean back, their iBOTs move away as well.

Not everyone who uses a wheelchair will be able to use the iBOT 4000, but an estimated 70 percent of people who use wheelchairs in the U.S. may qualify to have the iBOT prescribed for them. Users need to meet certain weight and flexibility requirements and must have sufficient hand function to dial a push-button telephone or use a hand-operated joystick. Some medical conditions such as brittle bones may preclude safe use of the iBOT. Independence Technology is on contract with the Veterans Health Administration (VA) for the iBOT Mobility System. The veteran must qualify medically and be registered with the VA. More information about the VA contract and reimbursement possibilities with other insurers is available from reimbursement counselors at Independence Technology’s Customer Zone phone number. www.iBOTnow.com Customer Zone 866.813.0788

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HURRICANE RELIEF RESOURCES AND PROGRAMS FOR PEOPLE WITH DISABILITIES

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illions around the world have watched the unfolding stories from the hurricane-ravaged Gulf Coast. Entire cities of people have been displaced and hundreds of lives have been lost. Some of those most affected by the huricanes are people who have illnesses or disabilities, from the young to the elderly. Biloxi, Mississipi, for example, was home to 10,700 people with disabilities—nearly 26 percent of the population; Mobile, Alabama, to 43,000; and New Orleans to 102,000.

As residents take the necessary steps to rebuild their lives, people with disabilities remain at risk, as their needs for basic necessities are compounded by chronic health conditions and functional impairments. Nevertheless, the situation is not hopeless. An overwhelming outpouring of community, organizational, corporate and federal support has occurred. Following is a brief list of helpful resources: • For a comprehensive listing of agencies, services, programs, special needs shelters and accessible housing accomodations, visit www.katrinadisability.info • There is a wide range of federal assistance available, but individuals with disabilities or chronic health care needs must register to receive services. To register with FEMA (Federal Emergency Management Agency), call 800.621.FEMA or 800.462.7585 (TDD) or visit www.fema.gov/about/process for online registration.

• United Cerebral Palsy (UCP) has set-up a Hurricane Disaster Relief Fund to provide services to people with disabilities affected by the hurricanes and to assist UCP affiliates throughout the region in restoring their operations as quickly as possible. To make an online donation, visit www.ucp.org/donate • Because the United States Postal Service (USPS) has suspended mail service in some hurricane-damaged areas, USPS has been establishing temporary mail delivery stations where Social Security recipients can pick up their checks. To find these locations, search the term Social Security on the www.usps.com website. To help prevent identity fraud, USPS will ask for photo ID. Social Security payments received by direct deposit will be unaffected. Recipients can also go to any open Social Security office to request immediate payment.

• Most pharmaceutical companies offer patient assistance programs, which provide free medications to people with limited resources who qualify. Several websites now offer comprehensive access to downloadable applications from nearly all the pharmaceutical companies,

covering more than 1,000 brand-name drugs. To learn more visit www.needymeds.com • The Centers for Medicaid and Medicare have announced a waiver among all of the states housing hurricane survivors who were already receiving Medicaid to have their Medicaid accepted in their current location. There will also be an expedited process for Medicaid eligibility for those who may now be eligible due to their hurricane-related situation.

PA R A LY S I S NEW TREATMENT GETS FDA CLEARANCE

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n the treatment of neurological damage, an important part of rehabilitation is maintaining the health of muscles that were previously exercised through voluntary movement. To this end, Restorative Therapies, a designer and supplier of medical devices, has received FDA clearance of the RT300-S, a cycling machine that activates muscles through an external process called functional electrical stimulation (FES).

The RT300-S can be used right from a wheelchair, with no transfer required. A computer delivers electrical currents to activate the quadriceps, hamstring and gluteal muscles, enabling the legs to move through a regular pattern of physical activity. “Studies reveal that such activity improves patients’ quality of life by promoting overall physical integrity: improving cardiovascular health, preventing skin breakdown, and reducing the incidence of osteoporosis and other secondary complications resulting from prolonged immobility,” says John McDonald, MD, PhD, founder of Restorative Therapies and director of the International Center for Spinal Cord Injury at the Kennedy Krieger Institute in Baltimore. “As an important activity in the lives of those with neurological impairment, this is a therapy that individuals, especially children whose nervous systems are still developing, can do now to promote their general health and physical well-being.”

According to Restorative Therapies, anecdotal experience suggests repetitive stimulation from the RT300-S not only helps muscles, but may also promote nerve cell growth and help the central nervous system become more functional. Controlled clinical trials are underway.

A pediatric model designed for children aged 4 to 12 years is also available for clinical use in the United States. “Until now, children with spinal cord injuries have not had the opportunity to cycle with FES,” says Therese E. Johnston, MSPT, research specialist at the Shriners Hospital for Children in Philadelphia, Pennsylvania.

“This device provides unique opportunities for children as they are still growing and changing, potentially allowing for even greater benefits.”

Restorative Therapies Inc. www.restorative-therapies.com ABILITY 11

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MEDICARE

NEW DRUG PROGRAM TO ROLL OUT

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or most of its 40-year history, Medicare—the federal health insurance program for people over age 65, people younger than 65 with certain disabilities, and people with end-stage renal disease—has not paid for outpatient prescription medications. But the Medicare Prescription Drug, Improvement, and Modernization Act of 2003 established that as of January 1, 2006, Medicare would include a prescription drug benefit called Medicare Part D. Enrollment is not automatic; people have to select a participating health plan and sign up.

The Medicare drug benefit is optional. However, there is a penalty for those who wait to join past the initial enrollment period (November 1, 2005, through May 15, 2006, for current beneficiaries, or at the time of Medicare enrollment for those who become eligible in the future). Beneficiaries who decide to enroll in Part D later will pay a one percent penalty for each month of delay unless they have comparable coverage from another source.

Under Part D, beneficiaries pay an extra premium each month and choose between at least two plans that offer drug coverage in their area. All plans include many brand-name and generic drugs, but the specific drugs covered may differ from plan to plan. The percentage of drug costs the plan pays varies with the total medication costs accumulated so far that year, after payment of a $250 deductible. According to the Centers for Medicare and Medicaid Services, in a typical plan, Medicare will pay 75 percent of drug costs from $0 to $ 2,250; then the beneficiary will pay 100 percent of drug costs from $2,250 to $3,600; after that, Medicare pays 95 percent and the beneficiary 5 percent.

Some people with limited income are eligible for extra help and may end up with little or no out-of-pocket costs. Beneficiaries will automatically be enrolled for the extra help if they also receive Medicaid (the federal health insurance for some people with low income); receive Supplemental Security Income (SSI) payments from Social Security; or are enrolled in a Medicare Savings Program (special programs that help some people with low income pay for copayments and deductibles).

Unlike most beneficiaries, these recipients will be automatically enrolled in a drug plan if they do not choose one on their own. Anyone with limited resources can investigate eligibility for extra help by contacting a local Social Security or Medicaid office for an application. www.cms.hhs.gov/partnerships www.medicare.gov 1.800.MEDICARE 877.486.2048 (TDD)

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OVARIAN CANCER REPORT ON EARLY SYMPTOMS

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varian cancer has generally been thought of as a silent disease because it doesn’t cause severe symptoms until it has reached an advanced stage. A new study from the journal Cancer, however, finds that abdominal swelling, pain and gastrointestinal complaints are common up to six months before ovarian cancer is diagnosed.

“Some patients with ovarian cancer do report symptoms many months before their ultimate diagnosis, and some ovarian cancer patients could have had an earlier diagnosis if pelvic imaging was included in their workup,” said Dr. Lloyd H. Smith, of the University of California at Davis.

Smith and his colleagues used data from the National Cancer Institute’s Surveillance, Epidemiology and End Results Program and from Medicare claims for California women who developed ovarian cancer to investigate whether symptoms preceded a diagnosis of ovarian cancer and whether an earlier clinical diagnosis is possible in patients with ovarian cancer.

Data for 1,985 women with ovarian cancer were compared to data from two control groups: 10,941 women with breast cancer and 6,024 without cancer. As early as 12 months before diagnosis, women with ovarian cancer were at least twice as likely to present to a physician with abdominal swelling or pelvic pain. As early as nine months before diagnosis, women with ovarian cancer were also more likely to complain of abdominal pain. Overall, about 40 percent of these women had one or more physician visits for abdominal or pelvic symptoms more than four months before their ovarian cancer was discovered.

“Our findings suggest that ovarian cancer could be diagnosed earlier in some patients whose diagnosis currently is delayed by at least four months, because physicians order abdominal imaging or perform gastrointestinal procedures before they order a test that is more likely to diagnose ovarian cancer,” the researchers concluded. Tests more likely to diagnose ovarian cancer include imaging of the pelvis and blood tests for cancer markers like CA-125. “If routine medical evaluation fails to explain the symptoms and they persist, then testing for ovarian cancer should be considered,” said Smith. www.ovariancancer.org

For frequent news updates, visit www.abilitymagazine.com

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ho am I now? What do I do with my life?

How do I become employed? How do I provide for my family? What will they think of me?

A veteran of the Gulf War and former Olympic and Paralympic athlete, John Register saw those questions flash across the faces of soldiers as he spoke at Brooke Army Medical Center (BAMC) in San Antonio, Texas. And he knew them all too well. He’d asked the same things himself 11 years ago while waiting for a prosthesis to be put on his left leg. BAMC is the place for military rehabilitation, he’d told himself, but the reassurances didn’t make his situation any easier.

Standing before a group of soldiers, all of whom had recently been injured or had undergone amputations because of combat, Register had a mission: to acknowledge any questions they may have about life after injury, and to promote sport as an answer.

Register was tapped this year by the United States Olympic Committee (USOC) to head its newest initiative—the Paralympic Military Program. By providing Paralympic sports as a part of the rehabilitation process, the project serves as an outlet for military members who have experienced service-related injuries. “We’re doing this to give back and show we are thankful for their service,” Register states. “It is imperative for the ABILITY 15

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train for the Olympic Games. His eyes were focused on the 1992 Games, but the Gulf War interrupted his training and he was called to serve his country in the Middle East.

After returning from Saudi Arabia unscathed, he had a mere 10 months to prepare for the 1992 Games. He qualified for the Olympic Trials and finished 17th in the 400-meter hurdles. Then Register began thinking: If he shaved just half a second off his time each year, he would not only qualify for the 1996 Olympics, but he’d be in the finals. “I was aspiring to be in the finals,” Register recalls confidently. “Then the injury happened.”

On May 17, 1994, while Register was running hurdles as part of his Olympic training, he crossed a hurdle and landed wrong on his left leg. The jolt severed the popliteal artery in his leg, cutting off circulation. He was flown to BAMC to have his leg amputated above the knee. Later, he was fitted for a prosthesis. Register retired from the Army but was hired back as a civilian sports specialist with the World Class Athletes Program.

During his rehabilitation at BAMC, Register turned to the water to boost his stamina. But swimming for kicks wasn’t enough. His desire to compete again made the clock his opponent—and he won.

growth process to have a family structure. We hope we can provide that.”

Register spoke both at BAMC and at Walter Reed Army Medical Center in Washington DC, introducing the Paralympic Military Program to the Army’s two Amputee Care Centers. He explained to the soldiers that just because they’ve experienced a life-changing event doesn’t mean it has to change their lives.

MAKING TRACKS The Paralympic Military Program is an opportunity for soldiers not only to try things they may have never tried before, but also to pursue goals that were nowhere on the radar prior to their injury. “For a person who may have never run a marathon on two legs, now maybe with a prosthesis he will run the Boston Marathon. For a person who has never skied before, all of a sudden he’s got one leg and he’s flying down a mountain on a ski.

That’s freedom,” Register declares.

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He achieved his goal of making the 1996 Paralympic Games in Atlanta, competing as a swimmer and making it to the finals as a member of the 4x400-meter medley relay team. Four years later, he was back at the Paralympics, returning this time to the oval track. With a specially designed plastic running prosthesis that gave him better control over his leg motions, Register competed in the 100-meter dash and the long jump, where he won a silver medal.

Now he’s telling others how they can follow in his footsteps—or make their own.

Register recently returned to BAMC and spoke to rehabilitating soldiers. Accompanying him were other Paralympic athletes, who helped demonstrate sports many of the soldiers had never seen. “The guys watched closely,” says Michelle Cano, a former case manager at BAMC. “We had one guy who ran on a prosthesis for the first time. We had another who was an amputee and sat in a racing wheelchair for the first time. He loved it and now wants to compete. The guys are getting a better understanding that there are no limitations to what they can do.”

Register understands that transition. His goals have changed too.

“Sport opens doors,” Register asserts. “It’s powerful.”

A three-time All-American, Register ran track at the University of Arkansas and competed in the long jump and the 4x400-meter relay. He qualified for the 1988 Olympic Trials in the 110-meter hurdles the same year he joined the Army. His athleticism allowed him to become a member of the Army’s World Class Athletes Program, which provides military athletes two years to

His subsequent visit to Walter Reed Medical Center had the same results. Soldiers walked into the medical center’s gymnasium and were in awe of two wheelchair fencers in full combat. By day’s end, several of the soldiers were also participating. Register explains, “We want to get across that we know you’ve had a tragic accident, but here’s how sport can help.”

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BIRTH OF THE PARALYMPICS Organized sports for people with disabilities have existed in some form for more than a century; sport for the deaf has been documented as early as 1888, according to reports from the International Paralympic Committee.

But after World War II, the physical and mental rehabilitation sport provided for returning servicemen rocketed to international attention the notion of athletic competition for veterans with disabilities. It was soon recognized that civilians with disabilities held equally strong athletic desires.

The flagship sport became wheelchair basketball. In 1946, teams were formed in Asbury, England, thanks to Sir Ludwig Guttman, considered by many to be the father of wheelchair sports. Wheelchair basketball games in America began at approximately the same time, with the first teams formed by California and New England chapters of the Paralyzed Veterans of America.

Sport for people with disabilities spread nationally and globally. Participation surged in 1948, when the first multi-sport games for people with disabilities were organized in Stoke Mandeville, England. Following the 1960 Olympics in Rome, the world witnessed the first Paralympic Games, with approximately 400 athletes participating. This premier competition has since grown exponentially, with the 2004 Paralympic Games in 18

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Athens hosting 3,837 athletes, including representatives from all five branches of the U.S. military. Most military athletes were former soldiers, but there was one active military competitor: U.S. Navy Petty Officer 2nd Class Casey Tibbs. On leave from his assignment in Afghanistan, Tibbs became the first active-duty soldier to compete in the Paralympic Games. Tibbs, who has used a prosthesis on his right leg since a motorcycle accident resulted in a below-knee amputation, won a gold medal in the 4x100-meter relay and a silver in his division of the pentathlon.

In addition to the increasing number of athletic opportunities in the Paralympic Games, there are just as many sport programs specifically for soldiers, Register says.

The problem has been tracking what programs soldiers participate in and where they go when those programs are over. But the comprehensive amputee rehabilitation programs at Walter Reed and BAMC have centralized the outreach for initiatives such as the new Paralympic Military Program. “We want to take a leadership role in reaching out to athletes,” Register says. “We’re putting them into a system so they can stay involved and so we don’t lose track of them.”

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MILITARY USING SPORT

THE GOAL

Army Amputee Care Centers at Walter Reed Medical Center and BAMC are staying busy as the present conflict in the Middle East continues. In previous wars that resulted in large numbers of soldiers with disabilities or amputations, rehabilitation was in the hands of Veterans Affairs. This conflict is the first in which the active military has taken full responsibility for veteran rehabilitation, says Captain Shane Koppenhaver, physical therapist and officer in charge of the amputee program at BAMC. “The military has invested a lot of money and a lot of care into these soldiers’ rehabilitation,” he says. “And a lot of them—although not the majority— are staying active in the military.”

Integration back into a previously known lifestyle is the ultimate goal of the Paralympic Military Program, using sport in the process.

The center at Walter Reed opened in 2004, and BAMC’s center opened in January of 2005. Currently there are about 45 soldiers in the amputee program at BAMC (eight inpatient and the rest outpatient), says Koppenhaver. Most of them are enlisted in the Army and Marines, but two come from the Navy and one from the Air Force.

For soldiers undergoing an amputation, rehabilitation begins two days following surgery. Two weeks later, they get their prostheses and workouts intensify. In uncomplicated amputations, soldiers can often achieve rehabilitation within a month. Those with multiple injuries may need longer to heal.

“We help them, but they really help each other more than anything,” says Mark Heniser, a physical therapist at BAMC. “These guys aren’t patients; they’re a team.

They all have different levels of injury and different rehabilitation needs, but most are in the same age group and all come from a military background. They lean on each other, compete against each other and share experiences with each other.”

At BAMC the occupational therapists understand that integrating back into everyday activities is a cautious process, so they take group trips to Sea World, downtown San Antonio, golf outings and bowling competitions. If pursued alone, says Koppenhaver, re-integration can be difficult. But initiatives like the Paralympic Military Program make it easier. “Our goal is to expose people and let them know what is out there for them to do,” Koppenhaver says. “It’s important for them to see guys who are further along in their rehab, guys who can run or walk with their prostheses. They can talk with those guys and share information about things we in the healthcare industry may forget to explain. They can also see people who have been discharged from rehab and have fully integrated into a normal life with their disability.”

The USOC has supported ongoing sport clinics for rehabilitating military members at Walter Reed and BAMC. The clinics started with running programs. “Running is a big part of rehabilitation,” says Troy Hopkins, a physical therapist technician at BAMC. “When the soldiers arrive here, we ask them what their goals are. The majority of them say they want to get back to running.”

Additionally, the clinics introduce sports like wheelchair fencing, sitting volleyball, archery and tennis. Soldiers are not forced to enroll in sport programs to rehabilitate their injuries, but it does help. Programs can be tailored to fit each soldier’s specific interest.

“When we get soldiers walking and moving, even if they’re playing seated tennis, they’re stretching their trunks, their backs and their shoulders by turning in different directions,” Heniser explains. “Building muscles in the trunk really helps them with their balance. It’s teaching them to adapt so they can catch themselves if they fall.”

Anybody who fits into a Paralympic class can compete in the Paralympic Military Program, including athletes with brain injuries, spinal cord injuries, vision impairments and amputations. Men overwhelmingly outnumber the women participants, but competition is open to all. “Even if they don’t compete, we encourage them to come and watch,” Cano says.

The regularly held clinics lead up to the climax of the USOC Paralympic Military Program: two multi-day military sports summits scheduled for Colorado Springs, Colorado, and Chula Vista, California, with as many as 100 veterans with disabilities competing.

“It’s not a substitute for total rehabilitation, where we work with building muscles and learning to walk on a prosthesis,” Koppenhaver says of the program. “But it is a very important part of the progress these guys are making.”

Questions abound after an initial injury. The adjustment to a new life can take its toll on the morale of soldiers who have experienced wartime injuries. Family support is crucial. A good rehabilitation system allows proper recovery. And sport, Register points out, is also an option—and he knows.

“I’m able to give these athletes what I was given,” he says. “I can tell them, ‘Hey, I was in your position. I was right there.’ It’s like a divine order. It’s what was meant to be. The goal is not to be a Paralympic athlete.

The goal is to lead a productive life.”

by Josh Pate ABILITY 19

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recipes provided by The American Institute for Cancer Research

DIETARY CHOICES PLAY AN IMPORTANT ROLE IN REDUCING CANCER RISK Thinking about cancer is something most of us would rather avoid, but today we know that paying more attention to our cancer risk is something that can yield real dividends. Researchers tell us the majority of cancers we face are preventable窶馬ot through new drugs or medical breakthroughs, but through simple lifestyle choices.

The foods you choose each day are one of the most important factors in protecting you and your family from cancer. Most Americans eat a diet that is far too high in fat and calories. Even more important is what the average U.S. diet lacks: a variety of vegetables, fruits, beans and other plant-based foods.

Soup, can be a healthy, hearty and refreshing meal any season of the year. Here are a few of our favorites:

WINTER BROCCOLI SOUP Ingredients: 1 large celery rib, thinly sliced 1 medium bunch broccoli, florets only, coarsely chopped 1 medium onion, chopped 2 small parsnips, peeled and sliced 4 cups fat-free, reduced sodium chicken broth, or

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vegetable broth Salt and freshly ground black pepper to taste 2-3 tsp. lemon juice, optional Chopped fresh parsley for garnish Instructions: 1. In deep saucepan, place celery, broccoli, onion, parsnips, broth, and pepper. Cover tightly and bring to boil over medium-high heat. Reduce heat and simmer until vegetables are very tender, about 20 minutes.

2. In blender, puree soup until velvet-smooth. Serve in bowls or pour into mugs. Garnish with parsley, if desired. Serves 4.

Nutritional Information: Per Serving: 106 calories, <1 g. total fat (<1 g. saturated fat), 23 g. carbohydrates, 6 g. protein, 6 g. dietary fiber, 613 mg. Sodium

SUMMER CORN BISQUE Ingredients: 4 ears fresh corn 1 small onion, finely chopped 1 medium yellow-flesh potato, peeled and cut in

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1/2-inch cubes 4 cups cold water 1/2-3/4 cup evaporated milk, preferably low-fat Pinch of cayenne pepper Salt and freshly ground black pepper 1 tsp. sugar (optional) 1/4 cup chopped scallion, green only 12-16 medium shrimp, cooked, shelled (optional) Instructions: 1. On a chopping board, cut off the corn kernels from each cob and transfer to a medium Dutch oven or deep saucepan. Scrape cobs with the back of the knife to extract milk and remaining corn bits, and add to the pot. Add the scraped cobs to the pot.

2. Add the onion, potatoes and water and bring to a boil. Reduce heat, cover and boil gently until vegetables are tender, about 15 minutes.

Remove cobs and discard.

3. Strain soup into bowl, reserving cooked vegetables; there should be about 4 cups of broth. Take out 1/2 cup of the vegetables and reserve.

4. In a blender, purée remaining vegetables with 2 cups of broth (about half) until mixture is creamy and smooth. Return purée to the pot.

5. Mix in 1/2 to 3/4 cup evaporated milk, depending on thickness of purée.

Reheat until hot. Season to taste with cayenne, salt and pepper. If the sweet taste of fresh corn seems weak, add up to 1 teaspoon sugar, if desired.

6. Divide chowder among 4 bowls.

Garnish each with reserved corn and scallions. If desired, garnish soup with cooked, shelled shrimp. Serve.

7. Refrigerate or freeze remaining corn broth to use in making vegetable soup.

Nutritional Information: Makes 4 servings. Per serving: 152 calories, 2 g. total fat (less than 1 g. saturated fat), 27 g. carbohydrate, 9 g. protein, 3 g. dietary fiber, 76 mg. sodium.

SPRING PEA SOUP Ingredients: 1 tsp. extra virgin olive oil 1 small sweet onion (e.g., Vidalia), finely chopped 1 boiling potato (about 4 ounces), peeled and cut into 1/2-inch cubes 1/2 tsp. salt 3 1/2 cups water 1 lb. frozen baby peas, thawed Salt and freshly ground black pepper, to taste 1 Tbsp. low-fat sour cream (optional) Fresh mint leaves, minced (optional) Instructions: 1. Heat oil in a large, heavy saucepan over moderate heat. Add onions and cook, stirring occasionally, until soft, about 2 to 3 minutes. Add potato and salt and cook, stirring, another 2 minutes.

2. Add water, cover and simmer until potato is tender, about 15 minutes.

Add peas and simmer, uncovered, 2 minutes.

3. Cool slightly, then purée in small batches in a blender. Force mixture through a very fine mesh sieve into a saucepan.

4. Reheat and season to taste with salt and pepper.

5. Top each serving with a dab of sour cream and fresh mint leaves.

Makes 6 servings.

Nutritional Information: Per serving: 86 calories, 1 g. total fat (<1 g. saturated fat), 15 g. carbohydrate, 4 g. protein, 4 g. dietary fiber, 280 mg. sodium.

TOMATO and WHITE BEAN SOUP Ingredients: 1/2 cup chopped onion 1 tsp. olive oil 1/2 cup thinly sliced celery 1/2 cup thinly sliced carrot 1 tsp. finely chopped garlic 1 can (28 oz.) diced tomatoes in juice 2 1/2 cups water

1 tsp. dried oregano 1 tsp. dried basil 1/2 tsp. dried cumin Salt and freshly ground black pepper, to taste 1 can (15 oz.) cannellini or Great Northern beans, rinsed and drained (puree beans for thicker soup) 1 jarred roasted red bell pepper, rinsed, patted dry, coarsely chopped (about 1/2 cup) 1/2 cup cut green beans (optional) Instructions: 1. In large saucepan, cook onion and olive oil over low heat until onion begins to color, about 5 minutes. Add celery, carrot and garlic; cook, stirring, 2 minutes. Add tomatoes, water, oregano, basil and cumin. Cover and cook over medium heat until vegetables are tender, 5-10 minutes.

2. Season to taste with salt and pepper. Add cannellini beans, red bell pepper and green beans, if using.

3. Cover and cook 10 minutes or until greens beans are tender and flavors are blended. Ladle into bowls and serve.

Nutritional Information: Makes 8 servings. Per serving: 74 calories, <1g total fat (0 g saturated fat), 14 g carbohydrates, 3 g protein, 3 g dietary fiber, 423 mg sodium.

The American Institute for Cancer Research (AICR) is the nation’s third largest cancer charity, focusing exclusively on the link between diet and cancer. The Institute provides a wide range of consumer education programs that help millions of Americans learn to make dietary changes for lower cancer risk. AICR also supports innovative research in cancer prevention and treatment at universities, hospitals and research centers across the U.S. The Institute has provided more than $65 million in funding for research in diet, nutrition and cancer. AICR’s Web address is www.aicr.org

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hen Brad Cohen began compulsively clearing his throat at age nine, his camp counselor gave him the nickname Froggy. When he progressed to a loud whoop or bark several times a minute, he was no longer viewed so affectionately. It would be several years before Cohen discovered he had Tourette syndrome, a neurological disorder that causes uncontrollable vocal and motor tics. Yet his teachers and classmates still thought he was purposefully misbehaving. He found himself ridiculed, mocked, shunned, punished and ejected from classrooms, movies and restaurants.

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Determined to provide something better for other kids, Cohen decided he would become the positive and accepting teacher he’d always wanted. After college, he went through 25 interviews in the Atlanta public school district before finding an elementary school willing to give him a chance in the classroom. He went on to become one of the best-loved teachers in his school and to win Georgia’s First Class Teacher of the Year Award.

In Front of the Class: How Tourette Syndrome Made Me the Teacher I Never Had, Cohen shares his experience with Tourette’s, his philosophy of unwavering determination, and the choices that have shaped his satisfying and successful life.

Following is an excerpt from Front of the Class’ second chapter, “Out of Control.”

don’t want to be around you?”

“Just like anyone would—sad.”

“Who do you want to blame when you get in trouble?”

“Myself.”

At the time, that was the only answer I could give, because I didn’t understand what was happening. Later, after I learned I had Tourette’s, I didn’t blame anyone, simply because there was no one to blame.

None of the doctors really seemed to need my help or input—even though my parents’ divorce had nothing to

When I was in second grade, my hyperactivity and my tics were increasing, so my mother turned to a professional to examine my feelings about the divorce. She dutifully took me to weekly appointments with one psychologist after another. I eventually saw three over the next few years—but I never disclosed much to any of them. To me they were strangers. Their potential to cause trouble for me was unknown, and I had no idea what they intended to do with whatever information they gleaned from me.

At that point in my life, I seldom had an encounter with an authority figure of any kind that didn’t go badly in one way or another.

Regardless of my thoughts on the matter, I now spent an hour each week under interrogation by the enemy, and like a good little prisoner of war, I gave back as little as I could. The scenario usually went like this: they asked a lot of long questions, and I made a lot of short, wary replies. Here’s one interaction I remember when I was nine or ten: “How does it feel when you make a noise or a tic?”

“Relief.”

“Do you feel anger toward your mother because your father left town?”

“No!” “How do you feel when other kids ABILITY 23

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do with my personality troubles, it got the blame anyway. From my point of view, finding the cause of my condition wasn’t nearly as important as finding ways to deal with it—and that was assuming that my emerging jerks and yips and yells could ever be dealt with at all.

Soon after I began classes in the fourth grade, at my new school, the subtler effects of Tourette’s began.

They were little things, mostly, but since I had not yet been diagnosed, they were things we didn’t know to expect. Realizing that there were still more unknowns out there that could present themselves was very upsetting. These new little symptoms began appearing like pop-up ghosts in my everyday life, most of all in my struggles with schoolwork. I was too smart to be having so much difficulty.

Although I didn’t know it then, while I was at school my mother was engulfed in frantic research, because I had begun doing other things that alarmed her. I was

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twitching. My face, arms, legs, and neck—major muscle groups twitched without warning and for no apparent reason. Imagine trying to read a book or write out an arithmetic problem when your face and head and neck are regularly twitching so badly that you continually lose your place, whether reading or writing. Every few seconds I’d have to take a moment to reorient myself on the page, then take in as much as I could before the next series of twitches came along. Long passages were a struggle, and every assignment took forever to finish. It really was a very slow process, and I didn’t know what to make of it—especially since my cognitive and memory skills were so strong. You see, the actual concepts put to us as students weren’t a problem for me, and the logic behind complex ideas was nothing I couldn’t handle. The trouble came at the point of contact, the first time my brain took in the information, and I felt it most with anything that involved reading or math.

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Your miles can build a home. A home that will provide relief, a future and the offer of hope. By uniting with the ABILITY House project, you can make this dream come true for low-income people with disabilities. Become an active participant and donate your Frequent Flier Miles to help expand this program throughout the United States and around the world. Simply call 1-800-421-4655 and specify the ABILITY Awareness Foundation as the recipient. To learn more, visit united.com and abilityhouse.com. Through United's Charity Miles Program, it's easy to show you care. Start redeeming your miles for something truly rewarding today.

UNITED is proud to support the ABILITY Awareness Foundation ABILITY 25

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But my study difficulties paled in comparison to my newest tic—an entirely new era of knee knocking. I mentioned earlier that when I was in the car I’d begun the practice of wobbling my leg back and forth against the door. Now, when I was in the car and sitting next to my brother Jeff, I began swinging my leg just enough to knock my knee against his. Not hard, but just annoying enough to drive any human nuts. The aggravation factor was bad enough, but in this case the worst part was that I honestly had no desire to mess with Jeff or cause trouble. I had no motive for bumping him over and over. But who was going to believe me when my behavior said the opposite? Of course Jeff would demand that I stop, but I couldn’t. At that time, I hadn’t developed my language skills enough to explain to Jeff that what my body needed was the feel of my knee knocking against his knee—in some very specific, certain way. I somehow knew that with the impact would come a feeling that turned off the need. It’s hard enough to explain all these years later; I certainly had no capacity for it back then. But I’d guess that the explanation would have sounded too absurd to have done me any good anyway.

You might be asking how this tic went over on visits with my father.

The short answer is that it drove him nuts. The first time Jeff and I got into the car with him and the knee knocking started up, he told me to stop—over and over—and of course I didn’t, and before long it wore through his patience like sandpaper rubbing on the skin of an elbow. In his frustration, Dad worked his version of tough love on the situation and popped me across the chin. I began to cry, because I was angry and embarrassed and equally confused. I wanted to stop knocking my knee but I couldn’t, so now I was going to have to pay the consequences.

Dad moved me into the front seat. So I went back to knocking my knee against the door. Same thing, looking for that just-right knock. Dad thought I was either mocking him or rebelling by trying to damage his car.

Round and round it went.

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My mom believed me when I said I couldn’t help it.

When I got upset, she rubbed my back to calm me down. It helped a lot, but I still didn’t talk to her about all the scary things going on in my head. I couldn’t tell her how confused I was, or how frustrated. The guilt of adding more to her burden would have been worse than the relief of talking it over with her. By this time I was old enough to realize how much pressure she was under just being a single parent, not to mention being a single parent of two hyperactive kids, one of whom was thought to be a little strange. So I just kept trying my best to figure it all out on my own. Mom kept hoping I would get used to the new house and the new school and settle down. She was especially worried because my teacher had begun sending notes home about my disruptive behavior.

One Sunday, after my usual Sunday morning conversation with Dad, I handed the phone over to Mom. Usually I raced upstairs and found something to get involved in, but this time I stopped halfway up to listen in on the conversation. Mom did all the talking. I was totally shocked as I listened to her describe my behavior. I seemed to have played a trick on myself by hanging back on the stairs, listening as the raw truth rolled out.

Over the phone, Mom recounted one mortifying incident after another. I froze there on the steps. Did I really do all that? My cheeks got hot with embarrassment at the thought of my mother silently observing me while I acted in such strange ways.

I couldn’t believe I was that out of control. Mom sometimes had a habit of exaggerating stories; I wondered if maybe that was the case this time. She made the situation sound so bad. When I got back on the phone with my dad, I tried to do damage control and offer assurances that everything was okay. That suited him better.

He didn’t want to talk about my tics or my poor behavior—he wanted a quick synopsis of the mundane aspects of our lives, such as how I did on my social studies test or how I was doing on my baseball team. I was happy to play along if it got me off the phone without any trouble.

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About this same time, Dad took Jeff and me on a special trip to Disney World, where he hoped I would behave more like a typical 10-year-old. I wanted to be a typical kid more than anyone could possibly imagine. I was very excited about the trip, as any kid would be, and I did have a really good time. I loved the ride Space Mountain, and I was enthralled by the Disney characters, especially Goofy, who was my favorite. But in my typically optimistic way, I had envisioned a trip during which Dad and I actually got along—and I am sure he had the same vision. Instead, I wore down his patience with my constant ticcing and hyperactivity, and he got angry. I became discouraged by my father’s inability to understand that I could not control my behavior. I hated the fact that I couldn’t be what my dad wanted—no matter how hard I tried—and I couldn’t wait to go home.

Nothing changed the fact that my mother was desperately looking for solutions and that I was still out of control. I only knew that I continued to struggle at school.

Reading an entire chapter in a textbook was like running a race with cinderblocks strapped to my ankles. I knew reading wasn’t supposed to feel that way, and I knew that some of the kids who grasped things more slowly than I did nevertheless could read with much more ease.

Any reading task, especially assignments of more than a few pages, took a terrible effort. Before starting a new chapter, I’d count the pages to the finish line. Sometimes I’d find that the last page of the chapter wouldn’t run the full page, but would contain only a few paragraphs. That made me extraordinarily happy, and reaching that final page was always a treat.

People often ask why Tourette’s should make reading such a chore. After all, if I can see clearly, and I can think clearly, and I can handle language, why is it so hard to read? Twitches aside, the best answer I’ve found so far is to ask a normal reader to imagine trying to read while several people simultaneously snap their fingers in front of your eyes and clap their hands next to your ears. With Tourette’s, those forces of distraction exist internally. The outside world sees only the symptoms, when they manifest in the form of twitches and tics. But within the mind of someone with TS, those physical

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impulses are only part of the picture. The Touretter’s attention span is tormented with flashes of broken thoughts and abstract imaginings. They constantly flick and flash like dancing characters filling a screen and blocking the view behind them—and they seem to move entirely of their own volition.

Yes, the tics can sometimes be squelched for very brief periods, but there is a correlative buildup of energy that will eventually force its way out like an explosive sneeze. At that point, the tics are as unstoppable as water spilling over the top of a dam.

I can now see that there was a time—when my tics were emerging—that they and I were both completely out of control. Now, if I have to, I sometimes bite on a pen or chew gum to focus my energy elsewhere. That sometimes temporarily quiets the tics. Various medications have also somewhat softened the decibel level of my woops and barks, but meds also often have debilitating side effects such as drowsiness and weight gain. Over the years I have taken several different medications for my Tourette’s, and new drugs are being developed all the time. So, although there currently are no medications that completely stop the tics, there is hope that in the future there will be. But in the fourth

grade—for me—all talk of drugs and medication was still very much in the future.

Even though the tics were devastating to me, I never totally despaired. Many with TS are suicidal, but I have never experienced those depths. Maybe there was some gift inside my nature that allowed me to tolerate my high-maintenance constant companion. Although I was distressed by the controversy my behaviors were causing at home and at school, all in all I was curiously upbeat much of the time. Some scrap of identity was left for me by my defining myself as a unique and original person, despite the obvious social stigma. Compared to some of my blander classmates, I never had the problem of walking around feeling unnoticed. I chose to see that as a positive thing.

Brad Cohen with some of his students

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In that time and place, I could sometimes even fit in as just another kid on the baseball team (where lots of chatter is considered a sign of enthusiastic heckling of opponents).

And Jeff and I sometimes participated in normal brotherly activities. We used to play baseball with an old tennis ball and use the garage door as a catcher. For a while, I was a Cub Scout and did all the typical Scout activities, including building birdhouses and participating in the annual Pinewood Derby.

Jeff and I had hundreds of small toy cars and we

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spent endless hours in the spare bedroom, which was our playroom, playing with them or our large collection of baseball cards. We often pretended to be baseball players or wrestlers from WWF (now WWE)—specifically Hulk Hogan and Andre the Giant. Those were times when I did many of the things normal little boys do.

But even though I sometimes forgot myself in those brief and blissful moments, the reality was that I was not normal. Rather than shrink from my unusualness, however, I embraced it, deliberately taking on an unconventional appearance that helped add to my exotic quality. I wore my very curly brown hair long and wild, in a white man’s version of an Afro. And I dressed in conservative clothes, which made my wild hair stand out all the more. It helped to cultivate a vaguely mischievous persona as well.

The image worked, for a while, because my naturally mischievous disposition coupled with my vocal tics projected a picture that made people think I was up to something—as if all my little symptoms were part of some secret joke.

I was juggling a lot of eccentricity, but at that point I could still maintain my inner self in familiar situations—and that reinforced my idea that having a specific identity is a basic human need. Anyone can flourish in a given situation, provided the identity they have—or the one they project—allows them to fulfill their daily needs and accomplish a few of their higher ambitions.

I find it interesting that many people in unique situations such as minehave been labeled unacceptable by our society. Most people are round pegs and fit in round holes. And that’s fine. For them. But those of us who are square or triangular or purple are often looked upon as lesser people. Our media-driven society has made some very shallow citizens out of the round pegs, and there’s no better position than that of a classroom teacher for observing the horrible effects that type of thinking is having upon the youngest members of our society. The costs are enormous when our kids give in to the pressure of measuring self-worth in bizarre ways—by wearing the right shoes, for example, or having a cool phone. We need to find better ways to educate our children about their, and our, self-worth. Nonmaterial things, such as kindness and loyalty, should count for more than having great hair. As a child, I found that small but regular doses of acceptance and approval continued to power my self-esteem long afterward. In general, for anyone, acceptance and approval together work like some sort of internal fusion reactor, and just run and run and run.

Excerpted from Front of the Class: How Tourette Syndrome Made Me the Teacher I Never Had

by Brad Cohen with Lisa Wysocky, copyright 2005.

Used by permission of publisher VanderWyk & Burnham (VandB.com), Acton, Mass.

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J

udy Edwards glanced at her baby, seated in a highchair next to her at the table. He wasn’t crying— surprising, given his slight fever when she picked him up from daycare. The 15-month-old was pleasantly quiet, just chewing on a piece of pepperoni. Her only child, Drew was generally a happy baby. His deep brown eyes shone with joy and his short arms loved to give hugs. He was precious to her—irreplaceable.

She continued to chat with the friend she was dining with. When she looked at Drew again, he was still methodically chewing that pepperoni and his eyes were sort of glassy. Edwards called her son’s name and he didn’t even blink. Something was not right.

Picking her child up in a panic, she left money for the bill and rushed out the door of the restaurant. The closest hospital was at least half an hour away, but she noticed a walk-in clinic across the street. “They said they didn’t see children under 18 months, but I pretty much wasn’t going to leave until someone looked at him,” she recalls. When a physician finally came out, he had Drew flown to the nearest children’s hospital, where the doctors diagnosed a febrile seizure (caused by a high temperature). They gave the baby Valium to prevent further seizures, put him in Intensive Care, and told Edwards they would watch Drew overnight to make sure his responses were normal and no damage was done. The next day everything checked out, so they sent Drew home.

Then it happened again.

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Two weeks later, with Drew’s father out of town, Edwards left Drew at his aunt’s house for the day. Drew woke up from his nap with a fever, so his aunt gave him a bath to cool him down. Then he had another seizure, this time with violent shaking. It was unusually long for a febrile seizure, but the doctors again attributed it to a fever and diagnosed Drew with pneumonia. Just to be safe, they put him on Phenobarbital—an anti-seizure medication—for a year and a half, on top of medicine for juvenile rheumatoid arthritis, the presumed cause of a red rash developing on his face and lower back, and the medicine he had already taken since two months of age for an abnormal heart rhythm..

It wasn’t until 12 years later that Drew’s many illnesses were tied together and his family found out what had really caused the seizures. And the heart arrhythmia.

And the red bumps now on his face, back, shoulder and scalp. Drew had tuberous sclerosis.

Still, no one could tell the Edwards family what that meant. Symptoms of the disease vary greatly from person to person, and while it’s not an uncommon disorder, many people—including some doctors—have never heard of it. It took visits to specialists and rounds of battling well-meaning but misinformed pediatricians before Drew and his family understood the diagnosis.

Tuberous sclerosis complex (TS), a genetic disorder present in an estimated 50,000 Americans and 1 million people worldwide, causes benign tumors (non-cancerous growths) in a variety of the body’s organs, such as

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the skin, kidney, brain, lung, heart, eyes and teeth.

Sometimes the associated symptoms are mild, and some people reach adulthood before they find out they have TS. Other times the symptoms are more severe, ranging from seizures to autism to kidney failure. Problems frequently occur if the size or location of the tumor interferes with the organ’s normal functioning or causes bleeding. A correlation also exists between TS and behavior problems—children with TS tend to be more aggressive and are more prone to attention-deficit disorder, bipolar disorder, autism, depression, obsessivecompulsive disorder and schizophrenia—but researchers aren’t sure how this increased risk interacts with other causes of these conditions.

Cardiac rhabdomyomas (tumors on the heart) are present in approximately half of babies born with tuberous sclerosis. Sometimes corrective surgery is necessary; more often, the tumors shrink or disappear with age. On the other hand, lung tumors tend to be non-existent at birth and childhood and develop in the 30s. Lymphangioleiomyomatosis (LAM) is the most common lung tumor condition and is found primarily in women.

Beginning lung tumors can be caught by a CT scan and should be monitored closely in case a lung transplant is necessary.

Three-year-old Brenna was diagnosed with tuberous sclerosis at six months because her weight gain was

abnormal and her abdomen was disproportionately large—a result of polycystic kidneys. Such kidney manifestations of TS are especially dangerous because of the kidney’s role in regulating blood pressure. Additionally, while most TS manifestations involve noncancerous changes, kidney and brain conditions must be observed closely because over time some TS-related problems in these organs can become malignant cancers. Yvonne Kahlen, Brenna’s mom and support coordinator of the Tuberous Sclerosis Alliance of Orange County, California, says Brenna will probably need a kidney transplant before she reaches adulthood.

Growths on the eyes and optical nerves and bumps on the skin are the least serious of all TS manifestations.

Blindness because of TS is extremely rare; retinal tumors and abnormal pigmentation in the iris are generally harmless. Likewise, people with tuberous sclerosis often develop skin lesions, which are the most consistently noticeable characteristic. Red bumps on the face and scalp, fibrous growths on the toenails, white ash-leaf-shaped marks on the limbs or abdomen, and a Shagreen patch—an irregular,scaly patch on the lower back—are all common traits of tuberous sclerosis.

Although the lesions are almost always harmless, laser surgery can improve their cosmetic appearance, at least temporarily.

The most common neurologic symptom, observed in ABILITY 31

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{Tuberous sclerosis complex (TS) is a genetic disorder present in an estimated 50,000 Americans and 1 million people worldwide

}

about 85 percent of people who have TS, is seizure activity, caused by tubers, or calcified root-like growths, on the cortex of the brain. Often seizures come several times a day. Early diagnosis and treatment are vital because repeated seizures pose the risk of brain damage.

Young children, especially, may lose skills they’ve developed, such as reading or talking.

Although early diagnosis is important, accurate information from doctors is not always available. Tuberous sclerosis is more common than Lou Gehrig’s disease, cystic fibrosis or hemophilia, with two babies born with the disease daily. But doctors just don’t always recognize it, and those who do often don’t have up-to-date information about prognosis. Part of the problem may be the lack of symptoms in people with mild tuberous sclerosis; some of the 50,000 Americans with the disease didn’t learn they had it until later in life, so doctors have worked less with TS than with more consistently severe diseases. Also, because symptoms are so varied, seemingly unrelated illnesses can be treated individually without first realizing TS is the root problem. For the same reason, doctors who do recognize TS aren’t always able to correctly translate what the diagnosis means.

A dermatologist was the first to associate tuberous sclerosis with Drew’s skin condition. But he didn’t know the condition well enough to explain the repercussions.

Mrs. Edwards remembers, “He was a gruff, unkind, nobedside-manner guy whom I was furious with before I left, but he did apparently know his trade. He was the first to mention tuberous sclerosis, but he did so while standing over my 13-year-old and talking about how I had better get this looked into because of the mental illness it caused. He was completely insensitive to the fact that this was a child at an impressionable age whom he was making feel like he was challenged.”

After Brenna’s TS was identified, doctors who didn’t know much about the disease argued with her mother about whether the baby’s enlarged kidneys were at all related to the condition, when in fact the polycystic kidneys were the symptom that originally clued her pediatrician in to the presence of TS. 32

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Joanie Stocker was diagnosed with TS at age 10. “I feel like I educate my doctors,” she says, mentioning that one doctor insisted she had lupus, despite negative test results in her file proving otherwise. Although the physician who discovered her TS warned her parents of possible developmental delays, Stocker has grown up free of any such problems, has gotten married and has given birth to a baby boy.

Kahlen desires the same successful future for her daughter Brenna. “I’m really hopeful that Brenna’s going to be able to live a full and productive life,” she says enthusiastically. “She is normal; she just has more challenges.”

Drew has an unusually mild case of tuberous sclerosis and, barring any unusual complications, he will live the rest of his life healthy. But TS still affects him. Drew is my fiancé, and we now must decide whether or not to have biological children—with a 50 percent risk that each would have TS. People warn us that our children could have dozens of seizures a day, that they could have developmental delays or major behavior problems.

I’ve heard all about the health risks, the financial cost and the emotional strains. Then I think, 21 years ago, what would I have wanted his parents to do? Would I give up the rolling laugh that meets my teasing? Would I give up the strong arms that encircle me when I’m having a rotten day? Would I give up the deep brown eyes that see my heart—just to avoid tuberous sclerosis?

Absolutely not.

Because even if Drew has another seizure or his kidneys are overtaken by tumors, or even if we have a child with a very severe form of the disease, Drew is still my precious Drew. He still brings me happiness and companionship every day. He is still irreplaceable.

by Noelle Kelly

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“No one talks about depression.

No one has depression in a Latino community.”

—Rodolfo Palma-Lulión, College Student

Real Men. Real Depression.

“I was really trying to get out of depression alone. It was really pushing people away. I couldn’t sit through classes at all. When I involved other people, it became easier. The more I told professors, ‘Look, I’m going through depression ...I’m having a hard time dealing with this,’ the easier it got to deal with.” Depression is a real disease that can be successfully treated. For information, call 1-866-227-6464, visit www.nimh.nih.gov, or contact your health care provider.

It takes courage to ask for help. Rodolfo did.

National Institutes of Health

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oni Anderson eases off the throttle, allowing her to fall several hundred yards behind the caravan of outdoor explorers, a group that includes her teenage son Quinton. Just as the line of snowmobiles is about to disappear from sight, she guns her machine and flies across the snowâ&#x20AC;&#x201D;a momentary indulgence of her adventurous side.

Away from the snow, the woman who refers to herself as Quintonâ&#x20AC;&#x2122;s mom shows her down-to-earth midwestern charm, belying her celebrity status. But fans will recognize in the understated blonde adventurer a hint of the bodacious with an attitude dynamo from her landmark role as receptionist Jennifer Marlowe on the popular sitcom WKRP in Cincinnati. As the office-girl-who-ran-the-company, Anderson turned the dumb blonde stereotype on its head, presenting a character who was both drop-dead gorgeous and smart as a whip.

She has since held roles in numerous films and television shows. She is a favorite for cameos and still loves to do comedy. The daughter of two long-time smokers, Anderson has also played the role of spokesperson for the National Lung Health Education Programâ&#x20AC;&#x2122;s campaign to increase awareness about chronic obstructive pulmonary disease (COPD).

Anderson recently made time for her friends at ABILITY Magazine: editor-in-chief Chet Cooper and managing health editor Gillian Friedman, MD. Together they talk about her family, her career and her advocacy about the hazards of smoking.

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Chet Cooper: I remember first seeing you on WKRP. When did you start acting?

Loni Anderson: I started acting when I was 10, doing musical theater. Since I was a brunette at that time, I was always cast in all the exotic parts. I played the Native American, the African American, the Italian.

Whatever ethnic group was called for, that was me.

Hard to believe, isn’t it? (laughs) I chose to be blonde for WKRP because the guy who created it, Hugh Wilson, said he wanted somebody who looked like Lana Turner but was the smartest person in the room. Very innovative, by the way, for 1978 when we started the show. On TV nobody sexy was smart, nobody glamorous was smart, especially in comedy.

Gillian Friedman, MD: How much of an adjustment was it to become a blonde?

Anderson: As a brunette, I had previously been this serious actress all of my life. Then I became a blonde and got to play a completely different, comic role. My daughter teases me once in a while saying, “Remember when you used to be my mother and you had black hair?” (laughs) My son Quinton only knows the blonde mother; I wore a dark wig one day and it freaked him out.

minute. I’d had my daughter when I was a teenager—I took my daughter to college with me. But the theater is where I belonged; I simply wanted to be an actress my whole life. My parents thought since I was a divorced mother and a teenager, acting probably wasn’t the right choice, so I got a teaching degree.

Interestingly enough, my grandmother was a teacher, my sister was a teacher, my daughter was a teacher and is now a superintendent in northern California, and my son-in-law is a high school principal. I am surrounded. I am the odd man out in the family.

Cooper: Are you doing any teaching these days?

Anderson: I do talk about acting to students making the transition from high school to UCLA. Kids going into this profession really need to know the reality of it. I think a lot of them go into it with stars in their eyes.

You’re rejected 10 to 20 times for every part you are going to get. I always say, “Look up the definition of rejection in the dictionary, get really comfortable with it, and then maybe you can go into acting.” I think that’s why we see so many tragedies in our business of people who can’t really separate themselves. I always realized that there’s the Loni Anderson over here who’s the mom, the grandma and the real woman, and then there’s the Loni over there who is just a figment of the tabloids’ imagination.

Friedman: Did you study theater in college?

Anderson: I actually have an education degree from the University of Minnesota, and I was a teacher for about a

Cooper: On the other hand, that tabloid fascination with celebrity has given you an opportunity to bring attention to some causes that are important to you.

Anderson: That’s true. I’ve been working with NLHEP, which is the National Lung Health Education Program, to raise awareness about COPD [Chronic Obstructive Pulmonary Disease—a varying combination of emphysema, chronic bronchitis and chronic inflammation].

It’s a lovely organization, completely focused on lung disease. I’ve been working with them and with the American Lung Association.

Cooper: Is the NLHEP affiliated with the American Lung Association?

Anderson: The organizations all interconnect in some way, and they share information with each other.

Cooper: How did you become associated with the NLHEP? Anderson: They contacted me. Although COPD is the fourth largest killer of people in the U.S., it’s not a very well-publicized disease. There was no celebrity spokesperson for it and nobody was talking about it. So they were looking for someone whose life had been affected by the disease to represent it.

The organization started checking around with celebrity

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agencies and managers. My dad had emphysema and both of my parents had chronic bronchitis and ended up with cancers—all smoking related—and I’ve always been very involved in anything that had to do with lung disease or cancer. I seemed to be the logical choice. I was so excited because a lot of people are involved with all types of cancer issues, but nobody was representing COPD. It was an awareness campaign that I really wanted to be involved with.

Friedman: There is an automatic association for many people between smoking and cancer, but they often don’t consider the other risks such as heart disease or COPD. Anderson: Right. And smoking is related to practically every terrible thing that can happen to you. People associate smoking with lung cancer, period. But that’s not the only risk; smoking affects so many other parts of your life. Even though a lot of people have been diagnosed with COPD, at least double or triple that number have the disease and aren’t aware of it. People think, I have asthma or I just have this cough and I’m getting older and a little shorter of breath and it’s no big deal.

They don’t realize that they could be getting help and some relief.

There is no cure for emphysema [progressive destruction of the lung’s ability to gather oxygen] but you can start treating it and you can have a better quality of life.

Now that the drug Spiriva has come along, people can go without their oxygen for much longer. They can go out and have a more normal life, where before they had

to either take their oxygen tank with them or be at home connected to it.

Friedman: Unfortunately, COPD is associated with people who are in their 50s or 60s or older; kids who are lighting up today just aren’t thinking about the repercussions.

Anderson: Young people think that nothing bad will ever happen to them. They think, I can smoke now and I’ll look really cool, and then I’ll quit because I can do that. I’m young and nothing will happen to me. When I talk to young people, I explain that your lungs are changed forever from your first cigarette. No matter when you quit—although quitting is a good thing, it will extend your life—you can do damage to your lungs that can never be repaired. There is a natural curve as a healthy lung’s capacity decreases gradually over the years and it’s just a nice, easy slope. If you smoke, you go—oops—straight down from the curve, but when you stop smoking you go back to the more gentle descent.

You don’t go back up to where you would have been— you’ve lost some of your lung capacity—but you follow the natural, slow decrease again instead of continuing to drop dramatically. People think, Well, I’ve already done the damage, but that’s only partly true. You’re always better off if you quit smoking; it’s never too late.

Cooper: In the awareness campaign, are you just speaking to smokers and potential smokers, or did you also direct your focus toward the doctors?

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Anderson: We first went to the kids, but then we talked to doctors, because they are the first line of defense.

Your family physician probably isn’t an expert in COPD, so we give doctors tips on the types of questions they should be asking.

Almost every person over 45, and definitely those who have ever smoked, should have a spirometry test. You breathe into a spirometer—every doctor’s office should be equipped with one—and it measures your lung capacity. Even if you quit 20 years ago, you should have that test. Many insidious diseases, like COPD, show up years later; we have so much lung capacity that we don’t even notice a problem until we are in our 40s. My dad was a Navy flier in World War II and there was nothing more common then than the friendly old cigarette. He was a four-pack-a-day smoker and had developed bronchitis by his 30s.

Friedman: Four packs a day!

Anderson: My sister and I had a funny story we always told—it wasn’t really funny—about never needing an alarm clock for school because our alarm clock was our dad coughing. When Dad started coughing it was time to get up. When he was in his 30s, he had to cough for about 15 minutes to clear out his lungs before he could get ready to go to work. By his late 30s it escalated into a half-hour, and by the time he was in his 40s it was an hour. He really coughed for a good hour. People don’t realize that excess mucus is part of chronic bronchitis, but that is one of the telltale signs besides the cough. It’s not a very pretty thing to talk about or think about.

Cooper: But it must have been nice to wake up to.

Anderson: (laughs) Cooper: At what age did your father start smoking?

Anderson: He started smoking when he was 14.

Humphrey Bogart smoked and it was all so cool. When my dad was a teenager he belonged to a gangster club where they wore trench coats and had nicknames like Lefty and Fingers and…

Cooper: Smokey?

Anderson: (laughs) Yeah, Smokey. My dad’s nickname was Gat, which meant gun. They all thought they were really cool and they were smoking. My mom started when she was 11. She lived on a lake and she went to the hill next door to try her first cigarette. She started the entire hill on fire and the fire department had to come. It was a major deal, but it didn’t deter her.

In those days, it was glamorous. In the movies, Bette Davis lights two cigarettes and hands the second one to James Cagney. It was just so glamorous and romantic. If you look back at any black-and-white movie, everybody is smoking. My memory of my mom is a wine glass in one hand and a cigarette in the other. She was a runway fashion model, and she was quite a glamorous woman.

Friedman: And cigarette companies also tried to tie smoking to the image of women’s empowerment and liberation.

Anderson: Exactly. And kids got involved—young people, musicians and what have you.

Cooper: And as Gillian mentioned earlier, kids are less likely to consider the long-term consequences.

Anderson: That’s why we talk to the kids. You can become addicted so quickly, and that’s what kids don’t get: three cigarettes in, your body already craves it. It is that addictive. We try to get to the kids where it makes a difference to them. With the girls we hit them in the glamour department and explain how cigarette smoke destroys the collagen in your skin. Your skin is going to look older, and there is nothing glamorous about the oxygen tank that you will have to carry around with you someday.

Friedman: Plus it yellows your teeth.

Anderson: That’s true. And there’s nothing glamorous about being dead. Then with the guys, we really get their attention when we talk about impotence, which is one of the major hazards of cigarette smoking.

A teenager said to me once, “But it looks so cool!” I said, “Well, there are a lot of cool dead guys, and we

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can talk about all of them: John Wayne and Steve McQueen—they were really cool, but they are also really gone. At the end of their lives they said the one thing they wish they could take back was the fact that they smoked.”

Cooper: At that time, most people weren’t aware of the risks of smoking.

Anderson: I remember doing The Tonight Show with Johnny Carson. A lot of people had ashtrays—they were all over the set because everyone smoked. Johnny Carson died of emphysema; he was from that generation that didn’t know better. There’s not much you can do for the people who were hooked before 1964 when the Surgeon General said, “This might be hazardous to your health,” but the people who got hooked after that knew it was a death sentence, or at least a disease sentence.

It’s amazing to me that young people will still pick up a cigarette.

Cooper: I can almost understand that in ’64 many people may have been skeptical of the Surgeon General’s warnings. But there has been so much research in the last 20 years that supports the connection between smoking and lung cancer, emphysema and bronchitis.

It’s not really an issue that people are still debating.

would not legalize them. They’d say, This is really a hazardous substance that we can’t allow anyone to have.

Cooper: Are you aware of any new findings regarding second-hand smoke?

Anderson: Yes, and my sister and I are both diagnosed with second-hand smoke syndromes. We have never smoked, but we grew up with second-hand smoke our entire lives, so in our 40s we developed asthmatic symptoms where we need inhalers on occasion, or we can’t get rid of a cold. I think a lot of people our age, the baby boomers who grew up with parents smoking, are going to find that more and more.

Friedman: There are many studies that indicate those exposed to second-hand smoke are at greater risk for developing a variety of respiratory problems.

Anderson: In a lot of the groups I met with, it wasn’t the smoker who had emphysema, but it was his mate. I saw a lot of relatively healthy men who had smoked their whole lives sitting next to their wives who had never smoked. But the wives had emphysema and were on oxygen because for 40 years they drove in the same car and lived enclosed in the same house. Women are much more susceptible and affected.

Anderson: We know all of those things can happen.

Cooper: But the tobacco companies have done such a good job of putting a smoke screen around the facts.

Anderson: (laughs) It is amazing, isn’t it? And really, if somebody invented cigarettes today the government

When women smoke, it is hard for them to quit because they are so worried about their weight; it’s a vanity issue and a mindset. They really need to think about the lifestyle they’ll have when they quit smoking—they will have more lung capacity and will be able to exercise and get rid of those few pounds. In 2000, the number of

ABILITY’s Gillian Friedman, MD, and Chet Cooper having a relaxing interview at Loni Anderson’s Los Angeles home

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women dying from COPD surpassed the number of men. Women are being affected younger, and they are dying faster.

Friedman: It’s amazing the difficulty people have quitting when you take into consideration how many different remedies exist, such as nicotine gum and nicotine patches.

Anderson: According to the doctors I’ve traveled with on speaking tours, once you are hooked, smoking is harder to quit then heroin; tobacco is really an incredibly addictive substance.

Friedman: It’s interesting you bring that up because I specialize in addictions in my practice, and there are very few addiction facilities that address nicotine dependence. They are more concerned that people stop substances like alcohol and heroin.

Anderson: Yeah, give them that cigarette. But it’s going to kill them too, it really is.

Friedman: A few facilities have instituted a policy that mandates their clients must give up everything, including cigarettes. They offer patches to their clients.

Cooper: [To Dr. Friedman] But do you think people sometimes resist using the patches or the gum because they think, Well that’s just another addiction?

Friedman: It could be, although patches are just used short-term, and they are infinitely healthier than cigarettes. Many people don’t realize that it isn’t the nicotine that’s killing their lungs. Nicotine causes the addiction, but tar and other chemicals in the cigarettes cause the lung damage.

Anderson: And a lot of people smoke and drink at the same time, so they are not only taking the stuff into their lungs, they’re taking it into their stomach and their liver, and it’s traveling throughout all of their vital organs.

My dad, who had emphysema in his 40s, died eventually of prostate cancer, but he also couldn’t breathe; one of those illnesses was going to get him. My mom had cancer of the liver and pancreas, and I remember her calling me in her early 50s gasping for breath—she died in her late 50s. She lived in Arizona and I was in California trying to get an ambulance to her because she couldn’t breathe. My dad on his deathbed asked for a cigarette. He couldn’t even lift his arms to smoke it. He was six feet tall and weighed 80 pounds. He was just emaciated and asking for a cigarette. That shows you how strong the addiction can be.

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tour said, “People get disappointed with themselves if they don’t quit the first time. But the average is four or five times before you are actually committed, a sustained quitter.” There are those rare people who can quit cold turkey and never pick up a cigarette again. As a matter of fact, the man in my life always says, “I miss smoking. I enjoyed every cigarette I ever smoked.” But he knew it was terrible for his health and he quit cold turkey; that was the end of it.

Cooper: Did you influence his quitting or did he quit prior to meeting you?

want me to be like him. It was horrible, so horrible I don’t know how anybody even starts.

Have either of you ever smoked?

Cooper: No, I never have.

Friedman: I worked as a bartender while I was in college, and smoking seemed to be kind of an occupational requirement. I tried to develop the habit but I kept forgetting to smoke.

Anderson: (laughs) Lucky you.

Anderson: No, he did it before we met. Otherwise, I would not have gone on the first date. I have a sensitivity to it. I grew up with that blue haze of smoke everywhere. There’s something about that smell that has always made me take a step back.

Friedman: Have you yourself been a smoker at any time in your life?

Cooper: You start mixing drinks?

Anderson: No, I haven’t. I know it sounds so easy for me to say, “Stop what are you doing,” because I don’t have that addiction; I can’t really know how difficult quitting is. My son Quinton was about 10 when I started working with the campaign. I was speaking at high schools, and the teenagers were saying, “Too late. You needed to talk to us in elementary school.” And then I remembered my mom, at age 11, making that decision so young. I thought about my son. When I would go on a tour he’d say, “Go save one person, Mom, just even one person.” I think it’s a great thing because at 10 years old it made him think about not smoking.

Anderson: (laughs) I have a really hard time when we travel; I’m so used to being in California where nobody smokes. I go to another state and I start coughing; I have to leave the room.

My son doesn’t know his grandparents. They were gone before he was born. My wonderful mom and dad who were so adorable and fabulous, who would be having the best time with him—they’d be 80 years old—they are gone and they have been gone for years and years and years.

Anderson: It was a sitcom. I played her mom and she was playing a version of herself. It was kind of like Curb your Enthusiasm, where you’re playing yourself, but everyone else around you is an actor playing somebody in your life. We had a really good time, and it was a very fun part for me. I’ve been able to play the mother of such beautiful women; I was Pamela Anderson’s mother in her series VIP, and I was Denise Richards’ mother on Melrose Place. I was Jennifer Love Hewitt’s mother in her first movie, Munchie. So I only have gorgeous daughters, including my own. Whatever gorgeous actress is out there, I’m always available. I like playing the beautiful girl’s mother; that’s always nice and flattering.

Cooper: You talked about how glamorous your mom looked as she held her wine glass and cigarette. When you saw that as a child, did you ever have any desire to try smoking?

Anderson: No, I did not. One day when I was about 11, I wanted to tease my dad and I had candy cigarettes. I could see my dad in our kitchen window, so I hid down behind the trunk and I took my little cigarette out and I was pretending to smoke. I thought I was as cute as a bug…oh, won’t he think this is a riot! He said, “I see that. Okay, come on in. You want to try a real cigarette?” I said, “Okay.” He lit a cigarette for me and said, “You have to smoke this whole thing.” I was puffing and he corrected me, “No, no, you have to take it into your lungs, that’s the way you smoke.” I did and then I turned green. I threw up all over the place and never thought of ever touching a cigarette again. He didn’t 42

Friedman: Fortunately for me, I don’t have that desire to smoke. At times, though, I will walk by somebody smoking a cigarette, and particularly if it’s the brand that I tried to smoke, I do get an instant, momentary craving…even though it’s been many years since college.

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Friedman: Beyond your advocacy, what projects are you working on?

Anderson: I recently did a pilot with Tori Spelling, and it was really adorable.

Cooper: A sitcom?

Cooper: No sons?

Anderson: (laughs) No, I’ve been the mom to boys, too. I did a series called The Mullets where I was the mother of two guys with mullet haircuts. And I was Will Ferrell’s and Chris Kattan’s mom in a movie called A Night at the Roxbury. Although I’ve been exceedingly dramatic in many parts—I’ve done 20 TV movies and killed a number of husbands, way too serious for kids to see—I love comedy, that’s my thing.

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Cooper: Speaking of husbands, how many times have you been married?

Anderson: I’ve been married three times. The first was my daughter’s father. I was a teenage, divorced mother—not very many of us around in the sixties. I’d known him for only a couple of weeks, and I was only married to him for a couple of months. It was a generation in which people had to be married to have sex.

Friedman: How do you look back on the marriage now?

Anderson: It was a major mistake, but from it I have my lovely daughter and two granddaughters. Then I was married to another actor for quite some time, and I came out to California with him. I always call him my favorite husband. He was my best friend, but we were a casualty of my success on WKRP. We were a regular Hollywood story like you would expect, where both start on the same level and then one takes off and the other one doesn’t. Our business is way too hard on marriages. Then I was married to Burt.

Cooper: Burt who?

Anderson: (laughs) I was with Burt [Reynolds] for 12 years, and we have our lovely son Quinton. I don’t regret any of my marriages, because my husbands have all brought lovely things to my life.

Cooper: Before this interview I had mentioned your name to some of the younger people working in the office and they didn’t recognize it until I said, “Well, she was married to Burt Reynolds…” and that’s what they actually remember.

Anderson: I have mentioned Burt’s name to as many people of the same age and they don’t know who he is either. They don’t know who Clark Gable is, and I always say I don’t trust anyone who doesn’t know who Clark Gable is. (laughs) At the same time, the reverse is happening to us where we don’t know who any of the young people are.

Friedman: Why do you think the public was so fixated on your breakup with Burt?

Anderson: Burt and I were kind of the couple, and everybody loved us together. We had been together a long time, so we were everybody’s sweethearts.

Cooper: Like what has been played out in the press with Brad Pitt and Jennifer Aniston.

Anderson: Yes, exactly. When everybody loves you together, no matter what happens, they want you to stay together because for some reason it makes them happy. People still say to me, “Oh, we just loved you guys together.” They have no idea what your real life was about or anything like that. I remember a newscaster saying on CNN, “Burt and Loni, Loni and Burt…it just falls off the tongue, and we can’t believe we won’t be saying it anymore.” We’re still friends; everybody is friends, and that is a good thing because we were friends first. I think if you were friends first you should be friends last.

Cooper: Then I hope we stay friends.

Anderson: (laughs) Sounds good.

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recently visited a friend in her high-rise office in New York City. She asked me to take a walk and then led me up a flight of stairs to the roof to show me the view of the Hudson River. One part of the roof had been taken over by smokers who, prohibited from lighting up inside, congregated atop the building to nurse their addictions. As we looked toward the river, I turned to see a couple of people finishing the flight of stairs to come to the roof to smoke. Both were winded and coughing but couldn’t wait to catch their breath before lighting up. My friend asked me, “Why do people cough and get out of shape from smoking?” I said they probably had the beginning stages of COPD. Of course, she then asked, “What is that?”

Chronic obstructive pulmonary disease (COPD) is caused almost exclusively by one factor—smoking. Tar and other corrosive chemicals damage the airways and small air sacs of the lungs, making it increasingly hard to get air in and out and to absorb oxygen into the body.

Affecting an estimated 16 million Americans, COPD is the fourth leading cause of death in the U.S. However, because it develops slowly—COPD is diagnosed most frequently in middle-aged or older people—lung changes are often underway for many years before people notice symptoms like shortness of breath. While there is no cure for COPD, stopping smoking dramatically slows its progression, and medical treatments and lifestyle changes can reduce some of the symptoms.

WHAT IS COPD? The lung’s airways branch out like an upside-down tree.

At the end of each branch are many small, balloon-like air sacs called alveoli. In healthy people, the airways are 46

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clear and open, the alveoli are small and dainty, and all components are elastic and springy. With each breath in, the alveoli fill up with air like small balloons, and with each breath out, the balloons deflate and the air goes out. In COPD, however, the airways become swollen and the air sacs become deformed and eroded.

COPD includes two main components, chronic bronchitis, which is present in virtually all patients and is partially reversible, and emphysema, which is present in some and is irreversible.

In chronic bronchitis, the airways leading into the lungs become inflamed and thickened and the cells lining them produce excessive amounts of mucus. These changes cause a chronic cough and difficulty getting air into and out of the lungs. They also destroy specialized cells in the airways that help sweep bacteria and irritants out of the lungs. As a consequence, people with chronic bronchitis have a higher risk of lung infections.

In emphysema, the walls between many of the alveoli are destroyed, leading to a few large air sacs instead of many tiny ones. These changes dramatically reduce the lungs’ capacity to absorb oxygen and get rid of carbon dioxide. The lungs rely upon the vast surface area created by millions of alveoli to allow oxygen to enter the blood stream through tiny blood vessels in the alveoli walls. When the walls collapse, the larger air sacs that remain do not have enough surface area to absorb all the oxygen the body needs. Additionally, the walls of some of these larger air sacs become stiff and can no longer push air out of the lungs when the person exhales. Air becomes trapped in the resulting dead space, and these parts of the lung are, in effect,

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removed from functioning. As the lung becomes more scarred and oxygen levels fall lower, people become susceptible to severe complications like respiratory failure and heart failure.

By the time most smokers begin to notice the symptoms of COPD—like chronic cough or shortness of breath when working hard or walking fast—they have progressed already to a moderate stage of the disease. In severe COPD, people have trouble breathing after just a little activity, such as doing household chores, unloading groceries, bathing and dressing. At this stage, quality of life is greatly compromised and the worsening symptoms can be life threatening.

WHAT FACTORS INFLUENCE COPD? Almost all cases of COPD develop after people repeatedly breathe in fumes that irritate and damage the lungs and airways. Smoking (including cigarette, pipe and cigar smoking) is by far the most common cause,

It remains largely unclear why some smokers develop COPD and others do not, but some evidence points to the role of genetics. Smokers whose parents had COPD are more likely to develop COPD themselves. In rare cases, COPD is caused by genetics even when smoking is not involved: Alpha 1 antitrypsin deficiency, or familial emphysema, is caused by the hereditary deficiency of a protein needed to inactivate destructive enzymes in the blood. This imbalance leads to the destruction of the lung and COPD. If people with this condition smoke, the disease progresses more rapidly.

HOW IS COPD DIAGNOSED? COPD is often misdiagnosed as a respiratory infection or asthma because symptoms can be similar, although the distinction can be made with a careful history, physical exam and breathing tests. Doctors should consider a diagnosis of COPD when a patient has the typical symptoms and a history of exposure to lung irritants, especially cigarette smoke.

CHRONIC BRONCHITIS - airway disease • Inflamed airways • Excessive mucus • Chronic cough

EMPHYSEMA - air sac disease • Destruction of air sacs (alveoli) • Poor oxygen absorption • Progressive shortness of breath

responsible for 85 to 90 percent of all cases. While only 15 to 20 percent of smokers are formally diagnosed with COPD, this commonly cited statistic is now known to be a gross underestimate of the number of people affected. Some recent data suggest that 70 to 90 percent of smokers develop COPD during their lifetimes, and 20 percent develop it rapidly. Occupational exposure over prolonged periods to dust, certain chemical fumes and gases can also contribute in some cases.

A quick, painless breathing test called spirometry can detect COPD long before a person has significant symptoms. Patients breathe hard into a large hose connected to a machine called a spirometer, which measures how much air their lungs can hold and how fast they can blow the air out after taking a deep breath. Additional tests may be performed to help determine the stage of COPD and to evaluate for other illnesses, such as heart failure, that can cause shortness of breath.

There is controversy over the role that exposure to heavy air pollution and second-hand smoke plays in COPD. Several studies show that these factors worsen other respiratory illnesses such as asthma, increase the risk for symptoms such as wheezing and coughing, and make the airways more sensitive to irritants. Nevertheless, current studies have yet to conclusively link them to the more severe changes of COPD. For example, one of the largest studies to date of second-hand smoke showed no increase for spouses of smokers in deaths from COPD, heart disease or lung cancer—the three most significant killers of smokers—as long as the spouses had never smoked themselves.

HOW IS COPD TREATED? Quitting smoking is the single most important thing a person can do to reduce the risk of developing COPD and to prevent it from becoming worse.

Medical interventions for COPD can help relieve some of the symptoms, but COPD cannot be cured. The goals of treatment are to improve breathing, slow the progression of the disease, increase the ability to stay active, prevent and treat complications and improve overall health. Depending on the severity of illness, some ABILITY 47

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patients may be referred to a lung specialist called a pulmonologist.

The primary COPD medications, called bronchodilators, work by relaxing the muscles around the airways so they open more quickly and breathing is easier. Most bronchodilator medications are inhaled. Because there are many kinds of inhalers, it is important for patients to know how to use theirs correctly, and they should ask the doctor or pharmacist to observe them administering a dose. Other medications sometimes used include corticosteroids, which reduce airway inflammation, and mucolytics, which break down mucus and make it easier to clear from the lungs.

Because lung function is already reduced in people with COPD, infections like influenza or pneumonia can be devastating. Therefore, yearly flu vaccinations and the one-time vaccination against pneumococcal pneumonia are very important.

Another mainstay of COPD treatment is pulmonary rehabilitation, where many different health care professionals work together to help people with COPD stay more active and have less difficulty carrying out their day-to-day activities. Programs include exercise, education in disease management, breathing retraining, nutritional counseling and psychosocial support. Respiratory therapists teach pursed-lip breathing, which helps relieve some of the fatigue people with COPD develop from breathing rapidly and shallowly. Occupational therapists teach ways of doing daily activities so as to conserve energy and lessen exertion.

For people with severe COPD and very low levels of oxygen in the blood, doctors may recommend oxygen therapy. In these cases, using extra oxygen can help people do activities with less shortness of breath, help protect the heart and other organs from damage and even prolong life.

In a small number of cases, surgery may be recommended for people who have severe symptoms, have never gotten improvement from medications and have a very hard time breathing most of the time. Surgery may remove an unusually large air sac that compresses healthy lung tissue, or it may involve complete lung transplant.

That means that the single most important step a person can take to maintain health and prolong life is to stop smoking.

Nicotine withdrawal symptoms such as depression, insomnia, irritability, anxiety and poor concentration are the main deterrents to quitting for most people. Studies show that more than 60 percent of people who smoke report that they intend to quit within the next 6 months, yet each year only 3 to 5 percent of those who attempt to stop will achieve a sustained quit (greater than 12 months). It is estimated that people who smoke need an average of four attempts to quit before they are able to maintain sustained cessation.

Chances for quitting successfully can be improved with the use of medications and behavioral therapy. The standard approach to drug therapy for smoking cessation has been nicotine replacement systems—including patches, gum, inhalers and nasal sprays—which help smokers withdraw gradually from nicotine. While some people avoid nicotine replacement because they don’t see the advantage of switching to another product that is still addictive, it is important to recognize that nicotine replacement is infinitely safer than smoking. While nicotine is the substance responsible for the addiction, tar and many other chemicals in tobacco cause the lung damage and other health problems. Using nicotine replacement is estimated to double a smoker’s chances of quitting successfully. The antidepressant buproprion (marketed as Zyban or Wellbutrin) has also been shown to reduce withdrawal symptoms and can be used alone or in combination with nicotine replacement.

Medications work far better when combined with behavioral therapy, although few smokers take advantage of the available programs. Behavioral therapy helps people identify barriers to quitting and plan to prevent relapses. An average of 20 percent of people who participate in a behavioral therapy program are able to maintain sustained cessation, a significantly greater success rate than in smokers who try to quit without support.

It is difficult to stop smoking, but it can be done. For those folks smoking on the rooftop who want to quit, I hope you keep trying.

by Gillian Friedman, MD

HOW DOES ONE STOP SMOKING? COPD has been thought of as a disease of the elderly, but in recent decades the decline in the average age at which people begin smoking (now age 10) means that someone who smokes a pack a day could reach, by age 30, the average exposure sufficient to produce symptomatic COPD. When the toll from COPD is added to the toll from other illnesses caused by smoking—such as heart disease, stroke and cancer—tobacco-related illnesses account for 20 percent of all deaths in the U.S. 48

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American Lung Association www.lungusa.org National Heart, Lung, and Blood Institute www.nhlbi.nih.gov The Foundation for a Smoke-Free America www.anti-smoking.org National Cancer Institute’s Smoking Quitline 877.44U.QUIT

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Cause for Celebration NATION RECOGNIZES THE 15TH ANNIVERSARY OF THE ADA

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inda Crossman took a deep breath. The full-time ADA coordinator for Vacaville, California was finally able to rest.

The small city of Vacaville, which takes up just 27 square miles of land between San Francisco and Sacramento, had planned a full month of activities in celebration of the liberties the Americans with Disabilities Act (ADA) had secured 15 years earlier for the more than 50 million Americans who live with disabilities. It hosted a Walk in Our Shoes forum; a performance by the Great Blindini, a magician who is blind and whose real name is Brent Gifford; and an accessibility planning meeting that was open to the public. Nearly every day, the Vacaville Reporter ran stories showing how the ADA has benefited people with disabilities.

All but four days had some event on the city’s calendar to publicly celebrate a month of disability awareness— most specifically July 26th, the date President George H.W. Bush signed the ADA into law in 1990. Crossman explains, “We decided to include as many ideas as we could, giving people a variety of ways to learn about people with disabilities. With the combination of newspaper pieces and events or activities, we felt there was something for everyone.” And Crossman, who ensures Vacaville complies with federal, state and local laws, organized it all…with the help of the city’s ADA advisory committee, she quickly emphasizes. The committee, 50

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which she chairs, acts as a liaison between the city and people with disabilities. Reflecting on the hectic month, Crossman says, “I don’t know how much time I spent, but whatever it was, it was worth it.”

A landmark civil rights law, the ADA banned discrimination based on disability and guaranteed equal opportunities for people with disabilities in areas of employment, public accommodation, transportation, government services and telecommunications. “The ADA reflects our nation’s faith in the promise of all individuals and helps to ensure that our nation’s opportunities are more accessible to all,” President George W. Bush said in commemorating the law’s 15th anniversary. “I call on all Americans to celebrate the many contributions individuals with disabilities have made to our country, and I urge our citizens to fulfill the promise of the ADA to give all people the opportunity to live with dignity, work productively and achieve their dreams.”

From the West Coast to the Eastern Shore, cities across the United States honored the president’s proclamation and celebrated 15 years of progress under the ADA. Throw a dart at a map, and a festival, picnic, sporting event, demonstration, open house or workshop could be located nearby.

In Hartford, Connecticut, the Developmental Disabilities Network held its annual celebration, aided by Jessica

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Jagger and Mary Eberle from the University of Connecticut’s A.J. Pappanikou Center for Excellence in Developmental Disabilities Education, Research and Service. For this year’s event, the Developmental Disabilities Network recognized groups around the state that had gone above and beyond the requirements of the ADA. Says Eberle, “Attitudinal barriers are the hardest of all to overcome, and our celebration honored organizations that are working to break these down. By recognizing such successes, we hope to encourage others to join the bandwagon by highlighting best practices.”

Adds Jagger, “The pursuit of civil rights and full citizenship for persons with disabilities did not end with the signing of the Americans with Disabilities Act in 1990, and as we work to ensure true inclusion in employment, education and community life for persons with disabilities, it is important to highlight the successes.”

The network honored four Connecticut organizations: Boundless Playgrounds, for its construction of accessible play areas; Connecticut Children’s Museum, for presenting a model of inclusion and universal design; Groton Parks and Recreation, for its dedication to inclusive programs; and Windsor Parks and Recreation/Northwest Park, for maintaining the Braille Trail, a well-kept woods walk that is accessible for people who have low vision or who are blind and people who use wheelchairs.

“We decided to focus for our first awards on organizations that provide children’s activities, because the ADA anniversary falls in the summer when school is not in session and children with disabilities are often isolated at home,” Eberle states. “We looked for organizations that, through both physical and program design, encouraged and supported the inclusion of children with disabilities in all of the activities they offered to children without disabilities.”

Across the country, each region found its own way to celebrate: The Oklahomans for Independent Living center in McAlester, Oklahoma, commemorated the signing of the ADA by moving to a new location closer to the city’s Department of Rehabilitation Services and more visible to the public.

The Freedom Ride rally in Parsons, Kansas, featured motorcycle games, a parade ride, street dancing and live music, with a welcoming church service to cap the week.

Indianapolis citizens enclosed a time capsule in which participants had written their visions of an accessible Indiana.

Flint, Michigan, offered demonstrations about accessible recreation and gardening, presented accessible voting machines and registered eligible voters.

Pittsburgh held its annual Disability Pride Day fundraising dinner and silent auction. Later, at a rally at the Allegheny County courthouse, several youths with disabilities presented to legislators a proclamation with promises for their futures.

JOBS+, a program of the Mental Health Association of Nassau County, New York, hosted workshops to give people who have mental illnesses an overview of the ADA, with emphasis on employment rights and accommodations.

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The list goes on. But it was the nation’s capital that captured the spotlight.

In Washington DC, the American Association of People with Disabilities (AAPD) sponsored its annual event to commemorate the ADA anniversary. The event has been home for the past five years to the Justice for All Awards, which recognize people who are extraordinary champions of the political and economic empowerment of people with disabilities. Awards were presented this year to Senator Jim Jeffords (I-VT) and Senator Gordon Smith (R-OR), both leaders in advancing disability rights in Congress, as well as author Jeffery Deaver and IBM executive vice president Nicholas Donofrio.

Yoshiko Dart, widow of the late ADA champion Justin Dart, led the annual Fun Run, a Washington DC event that carries on Dart’s memory and mission. Dozens of Fun Runs were held across the country, with proceeds going to the organization ADAPT (American Disabled for Attendant Programs Today).

Not far from the place where thousands had gathered in 1990 to see George H.W. Bush’s left-handed signature end decades of discrimination, on July 25th of this year 700 attendees celebrated the anniversary at an invitation-only reception hosted by the National Council on Disability (NCD). Appropriately, George H.W. Bush was the keynote speaker. “The ADA was a total team effort if there ever was one,” Bush said at the reception.

“Tonight has a certain homecoming feeling to it. In looking around, it gives me great joy to see so many familiar faces with whom it was my privilege to work, back when I still had a day job.”

One of those was familiar faces belonged to Lex Frieden, chairperson of the NCD. “Part of President Bush’s legacy is that he signed the Americans with Disabilities Act, but his relationship with the National Council on Disability started well before then,” Frieden relates. “The ADA means a lot to President Bush. So when we asked him to be part of our 15-year celebration, he was happy and proud to take part in it.”

Frieden was part of the group in 1986 that presented then-Vice President Bush with the report Toward Independence, which proposed a comprehensive disability rights act that later became the ADA. “I have talked to a lot of high school kids and college kids who have disabilities, and they were either very young or not even born when the ADA was signed,” he says. “They are growing up in a different world than we did. They can’t imagine a world where people with disabilities can’t use a facility. It’s hard to remember how things really were. Sometimes I have to pinch myself. There has been so much progress that it’s phenomenal.”

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Medal for the Empowerment of People with Disabilities was presented to Allan Reich, president emeritus of the National Organization on Disability; Dr. I. King Jordan, president of Gallaudet University; and Representative Steny Hoyer of Maryland.

“In looking back some two decades later, you can indeed say we’ve moved our society forward toward independence, and the signing of the ADA was certainly a significant step along that wonderful path,” the elder President Bush said at the reception.

Secretaries of labor, transportation, housing and urban development, health and human services and homeland security were all present and spoke at the reception. At the NCD’s second event on July 26th—a seminar at the Marriott with workshops focusing on ADA-related issues—more than 300 people participated, and leaders of the Social Security Administration and the Equal Employment Opportunity Commission spoke. “Each wanted to join the celebration, but they also each acknowledged that we have a great deal of work to do if we are to reach our vision,” Frieden says of the government officials. “To me, that was important.”

As a preview to the NCD’s annual ADA Impact Study, the organization released a paper elaborating how the ADA has left its mark: NCD and the Americans with Disabilities Act: 15 Years of Progress. Several strides have been made, according to the paper, in communication, transportation, accessibility to public facilities, and narrowing the education and employment gap, although a need for further improvement remains.

Increasingly, local governments are creating ADA compliance positions like Crossman’s to ensure those improvements are on the calendar. “I strongly believe the ADA is much more than fixing physical barriers,” Crossman says. “Most of the ADA coordinator position should be focused on people—education, responsiveness, understanding and awareness.”

But now that the parades have ended, the receptions are over and the open houses have closed their doors, this question remains: Will the progress continue?

The more Linda Crossmans that are hired, the more cities that will be able to say, “Yes.”

by Josh Pate

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It’s Not All Roses: THE TIME TABLE OF CIVIL RIGHTS As celebrations rippled across most of the U.S., some ceremonies took a different tone.

In Trenton, New Jersey, approximately 200 men and women braved steamy weather to demonstrate that the ADA has not, in fact, been fulfilled as promised. The march, sponsored by the Monday Morning Project and the Council on Developmental Disabilities, began at the Trenton state house and ended at Mill Hill Park; along the route, participants encountered steep curb cuts, rugged sidewalks and, in some places, a total lack of wheelchair access.

Nationally, even the ADA’s strongest advocates conceded that the act has not been upheld to its fullest extent in all areas during its 15-year lifespan.

“This anniversary stirs mixed emotions for those of us who work closely with people with disabilities and, of course, for people with disabilities themselves,” said Wayne M. Lerner, DrPH, president and CEO of the Rehabilitation Institute of Chicago (RIC) and Henry Betts, MD, chairman of the RIC Foundation, in a joint statement. “So while the ADA has forced changes in access to physical locations, we know that in terms of awareness, acceptance and the provision of educational, housing, employment and transportation opportunities, there is still considerable progress to be made.”

Several statistics and developments illuminate the mixed feelings of Drs. Lerner and Betts: • A 2004 Harris Survey conducted for the National Organization on Disability found that just 35 percent of people with disabilities report being employed full- or part-time, compared to 78 percent of people without disabilities. Twenty-six percent of people with disabilities live in poverty—three times the number of people without disabilities. People with disabilities are also twice as likely to have inadequate transportation.

• President George W. Bush acknowledged the shortcomings of the ADA and the measures that must be taken to stay the course. He has launched the New Freedom Initiative to increase the use of technology use in educational and employment platforms. A new website—disabilityinfo.gov—has been created as a comprehensive home for information. According to the president, accessibility, education and employment are top priorities of the Administration.

• The U.S. Department of Justice has begun Project Civic Access, working with more than 100 state and local governments to bring them into compliance with the ADA. The department has entered into agreements with 129 cities, towns and counties that are not yet fully successful in making their programs and services accessible. Starting in 1992, the ADA required all new facilities to be accessible. Changes to older buildings may also be required if needed to make government services accessible, but these changes are subject to reasonable time and expense.

Time and expense—these are perhaps the two greatest factors that have prevented the ADA from realizing its full potential for eliminating discrimination and physical barriers for people with disabilities.

“It’s been 15 years since President [George H.W.] Bush made his promise,” Lerner and Betts contended in their statement. “Though it has yet to be fulfilled, it can be if we continue our activism.”

Frank Bowe, longtime disability rights activist and professor in the Counseling, Research, Special Education and Rehabilitation Department at Hofstra University, gave perhaps the most succinct explanation as to why the ADA has yet to result in complete change: “Civil rights,” he said, “take time.”

by Josh Pate

• The Screen Actors Guild (SAG) released a report showing that actors with disabilities are severely underrepresented in television and movie roles. Although in real life one out of five Americans has a disability, less than two percent of television characters have a disability, and of those, 0.5 percent have speaking roles. “The ADA was a quantum leap in the right direction, and SAG has been a tremendous advocate,” said actor Robert David Hall of CBS’ CSI: Crime Scene Investigation. “But today we have the first real documentation of what performers with disabilities and their advocates have long suspected: we have far to go to achieve true equality of opportunity.”

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Comedian Michael Beers, winner of Comedy Showcase

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o a burn survivor, a blind man and an amputee walk into this bar…”

Actually, it was the Hollywood IMPROV, and comedians Reginald Pope, Michael Lee and Damienne Merlina were joined by an assortment of other comics for the sixth annual Norman G. Brooks Standup Comedy Showcase. Sponsored by Fern Field, coexecutive producer of the USA Network’s hit television show Monk, in honor of her late husband, Norman Brooks, the scholarship competition is presented by the Media Access Office (a program of the California Employment Development Department) and the Friends of Californians with Disabilities.

This year nine contestants took the stage, with five minutes each to get the audience (and judges) laughing.

First up was Franky C, poking fun at his Jewish Puerto Rican heritage as well as his blindness. He was followed

by Nancy Becker Kennedy, an accomplished actor as well as comedian. Next came Reginald Pope, otherwise known as Reggie Blaze, who joked about his reaction to a car explosion that left his skin on fire: “I ran so fast my shadow was behind me, shouting, ‘Slow down! You know I got asthma!’” Rosi Reed followed Pope, then came Michael Beers, then Chris Fonseca. Michael Lee brought his guide dog Filbert onstage and had him do tricks, laughing as he rewarded the animal with doggie treats shaped like chicken legs, pizza and cheese. “You wanna impress my dog? Shape them like a little poodle’s butt.” After Lee, Damienne Merlina, a young redhead, performed, and one of ABILITY Magazine’s own, comic writer Jeff Charlebois, ended the night.

Beers won the competition with a constant stream of jokes about college, careers and girls. A junior communications major at the University of Montana, he told of his struggle with algebra. “I’ve been looking

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for x for eight years,” he grumbled. “When I find him, I’m going to give him a map, some breadcrumbs and a cell phone so he’ll never get lost again. I wonder sometimes: “If I got lost, would x come looking for me?”

The judges for the competition were Bonny Dore, producer with Bonny Dore Productions Inc.; Chuck Parker, production designer for Monk; Kathy Buckley, actor, comedian and motivational speaker; Roger Strull, an agent with Preferred Artists Agency; Joni Ravenna, writer and on-air personality of Hello Paradise on KVCR Palm Springs; Anthony Santa Croce, producer for Monk; Carol Casella, studio director with RenMar Studios; John Landis, director of Animal House, An American Werewolf in London, Coming to America and numerous other films; and Field.

In between acts, host Fred Burns and hostess Tanyalee Davis entertained the crowd. Burns has won the grand prize on ABC’s America’s Funniest People and performed in the Farrelly Brothers’ movie Stuck on You. Davis won last year’s Comedy Showcase and has held roles in several television shows and movies.

After announcing Beers as the winner and presenting him with the scholarship, Field handed Paul Miller, director of Disabled Student Services at California State University–Fullerton and board member of the Friends of Californians with Disabilities, a check for next year’s scholarship recipient. Thus, the Norman G. Brooks Standup Comedy Showcase is already prepared for another year to delight a new audience with several of the most talented up-and-coming entertainers, and to give one more comedian the chance to study his or her craft in depth.

And that’s no joke.

by Noelle Kelly

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Nursing School FINDING A GOOD PROGRAM FIT FOR A STUDENT WITH MULTIPLE DISABILITIES Colleen has a back injury resulting from two car accidents. She has limited range of motion in her neck, limited ability to turn and bend, and a weight-lifting restriction. At times, she must use a walker or a wheelchair.

She has 70 percent hearing loss in her left ear and 30 percent loss in her right ear. Currently working as a nurse and attending graduate school, Colleen shared with Dr. Donna Carol Maheady, author of Nursing Students with Diabilities: Change the Course, the following story of her long journey to the completion of a bachelor’s of science in nursing (BSN) program in the South.

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applied to hundreds of nursing programs across the country; I was accepted at only one. In the beginning, I was forthcoming regarding my disability when completing the applications for admission, but as time went on and I continued to be rejected, I became less open and provided only minimal details. I said I was a student with a disability and I couldn’t lift more than a certain weight. I was never dishonest; it was simply better to wait for a request for details regarding my disabilities.

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Rejection came in many ways. Often, I got no response whatsoever from a program, despite my repeated phone calls. Other programs said their policies required a nursing student to be able to lift x number of pounds. I was totally frustrated.

Thankfully, I was accepted at the program I now attend. The university has an office for students with disabilities. They provided a remote control for the doors that are too heavy for me to open. I carry my books in a wheeled suitcase. Sitting is a problem; I can’t sit for three-hour classes in a regular classroom because of the small desks with inadequate backrests.

Most of my teachers understand if I have to stand and walk around at the back of the room; however, because I can’t hear from the back of the room, I limit the time I spend there.

Most of the instructors are aware of my hearing loss.

One of them gave me tapes to facilitate the learning of heart sounds. The tapes helped, because I could literally place my stethoscope onto the tape recorder in order to

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amplify the sounds. Additionally, I tape my lectures. Only one professor has been resistant to that.

When I entered the clinical courses and began caring for patients, I needed more accommodations. In the first semester, faculty members were concerned about my ability to perform clinical tasks because I wear a back brace. In the initial few weeks, instructors assigned another student to do all lifting for me. They seemed more concerned about what I couldn’t do than what I could. I can perform many of the procedures expected of all nursing students, but I’m smart enough to know that I can’t lift a 200pound person without help; most nurses without disabilities shouldn’t do too much heavy lifting either. Often professors underestimate me and are very surprised at the things I can do.

One of my medical-surgical clinical instructors recently had back surgery and wears her back support to clinical experiences, and it helps that she has a personal understanding of accommodations.

During part of the medical-surgical course, students must observe in the operating room (OR). I informed her that I wouldn’t be able to stand in the OR, and she said, “Fine. If you’re not planning to be an OR nurse, it doesn’t matter.” She changed my schedule to exclude both the OR and the surgical recovery room and gave me more medical-surgical experience on the ward.

Often my classmates are equally as helpful. In a course that included learning technical skills in the campus laboratory, the laboratory beds presented a challenge. I had difficulty bending over a bed if it couldn’t be raised to a high position. The equipment was old and often didn’t work; I would try to make do, but my limited body mechanics placed me in a precarious position.

Only one of the beds worked well, so when we went to the lab most of my group members said, “This is Colleen’s bed.”

Not everyone is as understanding, though. During my psychiatric nursing rotation, my legs simply didn’t work and I needed to use my wheelchair. The faculty member who taught the course told me I couldn’t use it. In her mind, the minute anyone sat in a wheelchair, that person became a patient. The notion that a nurse can use a wheelchair was still alien. But since we don’t give baths or personal care at the psychiatric hospital and my job was just to be with clients in group counseling sessions, I knew I could work from the chair. I had to recognize that the problem was the instructor’s and not mine. Unfortunately, it was close to mid-term evaluations, and her evaluation of me was that I couldn’t function. She told this to my entire clinical group. That pronouncement did not help doubts several classmates already had about my capability to be a nurse. Overly competitive students, in particular, have a difficult time with me. One student said to me, “People like you shouldn’t bother taking slots in nursing programs from people like us who don’t have disabilities.” I wanted to reply, “I don’t think people with attitudes like yours should be nurses either!”

Students who have a problem with me are sometimes vocal in grumbling to instructors. Last term, my clinical instructor told me, “Some of the students are complaining that you’re not getting the same experiences they are.” Whose fault was that? If there was something else I should have been doing, the instructors needed to tell me what it was. If they don’t give me the ABILITY 57

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opportunity to try, I don’t have the opportunity to show them I can do the work.

I offered to explain to the clinical group my perception of the assignments and discuss how we could work out the needed adaptations. My instructor said she didn’t think that was necessary. I knew it wasn’t an issue among all of the students—just one or two.

My experiences with patients, however, have been great. Because I spent seven months as a patient myself, I have learned a lot about the frustrations of being in that hospital bed. If nurses were cognizant of what it’s like to be on the other side of the medical chart, they would be better nurses. In one nursing class, an instructor asked how many students had been hospital patients.

Only four of us had ever had surgery. We have an advantage in knowing what care we wanted and didn’t receive from the nursing staff, and what we appreciated.

I go out of my way to do the little things, like making sure patients have their necessary items, such as lotion, close at hand, or finding a more comfortable position for them. I have patients who hug me and many who cry with me.

In my last clinical, I had a gentleman who didn’t want to go to a hospice to die. He was on continuous morphine to make his pain endurable. I gave him a bath. Both his girlfriend and his ex-wife were there. We had a good time and I soon had him in stitches. I made sure he was shaved. Why should his last days be filled with unpleasant experiences? Suddenly, he started to cry. “Nobody has shaved me in four days,” he said.

One heart patient was having unusual feelings after being placed on a new medication. I reported her statements to the charge nurse, who said that the patient had never complained about those symptoms before—but maybe nobody had asked her. The medication orders were changed, and I had made a difference in somebody’s care. I don’t guarantee that my technical skills are better than those of everyone else in my group, but as far as being a caring person is concerned, I have a great deal to offer. The patients seem to love me.

Being a nursing student with a disability is wonderful and challenging! I haven’t lost that sense of excitement about everything I get to do—the first time I started an intravenous line (IV), the first time I put in a foley catheter. I think those feelings are the same for every nursing student, though I probably go home and giggle about it more than anyone else. Every little hurdle I scale makes me more confident I can get up and do it again tomorrow, even though tomorrow may be one of those days when putting my two feet on the floor causes excruciating pain. I sometimes wonder how I can survive the day, but somehow I put one foot in front of the other. Knowing I’ll be giving to someone else helps me through the aches and pains. The joy of helping people is worth the challenges.

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Colleen’s story is adapted from a chapter of Nursing Students with Disabilities: Change the Course, by Donna Carol Maheady, EdD, CPNP, RN, copyright 2003

by Exceptional Parent Press.

A pediatric nurse practitioner and nursing care consultant, Dr. Maheady is an adjunct assistant professor in the College of Nursing at Florida Atlantic University and the founder of ExceptionalNurse.com, a not-for-profit resource network committed to inclusion of people with disabilities in the nursing profession. Dr. Maheady’s book, which won the 2004 American Journal of Nursing book of the year award in the category of nursing education and continuing education, is available at www.eplibrary.com www.amazon.com

COLLEEN’S ADVICE FOR NURSING STUDENTS WITH DISABILITIES: After experiencing the ups and downs of nursing school first-hand, Colleen shares these tips for students with disabilities who hope to become nurses.

Be willing to face challenges and put aside negative comments from others.

Going to school is a full-time job, so don’t work unless it is absolutely necessary. Instead, explore every opportunity for scholarships and financial aid. In addition, adapt your schedule accordingly, getting pre-requisite courses out of the way before beginning a nursing program. Take advantage of summer school.

When applying to different schools, look carefully at each program’s philosophy. If a program strongly emphasizes technical skills and competitiveness, it may not fully appreciate other aspects of nursing, such as empathy and patience.

Study laws that protect students with disabilities, such as the Americans with Disabilities Act and the Rehabilitation Act, and become aware of accommodations you are entitled to receive.

Know your strengths and send a positive message to the schools where you apply, rather than focusing on what you can’t do. In your first meetings with administrators, refrain from negativity.

Learn to take rejection because you may get a lot of it before you get what you want. Don’t stop. Hang on until you find the program that’s perfect for you.

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hen I was seventeen, my friends were playing with a gun they didn’t know was loaded. The gun went off and the bullet hit me in the neck, paralyzing me from the neck down,” explains Derrick Daniels, the owner of the first ABILITY House to be built with smarthome technology. “The doctors didn’t think I was going to make it through the night, but I had one of the quickest recoveries they had ever seen.” Daniels spent 10 years following the incident living at his mom’s house, facing the frustration that comes with living in an inaccessible home. “I’d been ready to move out on my own for some time; [my mom’s] house wasn’t built for someone who uses a wheelchair, so a friend of mine who’s a real estate agent took me around to see places.”

As his search progressed, it quickly became evident that nearly every home would require extensive modification to be wheelchair accessible.

ABILITY’s Ron Talley presents Derrick Daniels with an engraved hammer at the dedication of his ABILITY House.

“Then one day I realized I hadn’t prayed about it. So I did, and within two weeks I was in a gas station and I met a man named Chris Wright,” says Daniels. “I told him I was looking forward to moving out of my mother’s house, and he told me about the ABILITY House program.” Wright, who was the first person with paraplegia to own an ABILITY House, provided the necessary information, and three months later Daniels was approved for a house of his own.

The ABILITY House program works with ABILITY Magazine and Habitat for Humanity to construct accessible homes for low-income families with disabilities, while engaging people with disabilities in the community as volunteers to help build the homes. Every ABILITY House employs universal design elements and meets the criteria of visitability (i.e., people with disabilities who don’t live in the home can still visit it with ease). The basic features include a minimum of one no-step entrance, hallways at least 36” wide, and one bathroom on the first floor with a 32” doorway. In addition, each ABILITY House is built to accommodate the specific needs of the homeowner.

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The first ABILITY House for a person who has quadriplegia, Daniels’ home was constructed in collaboration with the Habitat for Humanity of Greater Birmingham and sponsored by BellSouth and ABILITY Magazine.

A typical family home may be riddled with obstacles and barriers for a person who has little or no mobility.

Without assistance, telephones can’t be answered, a light can’t be dimmed and a guest cannot be welcomed into the home. When ABILITY learned the nature of Daniels’ disability, the program looked for resources to make his home not only accessible, but also equipped with technology to help him live as independently as possible. It asked Hewlett Packard (HP) to help, and HP’s support allowed Daniels’ home to become a smart home, outfitted with extensive computer-assisted mechanics and environmental controls. Additionally, SureHands Lift and Care Systems contributed a lift mechanism to move Daniels from shower to bed on a rail system in the house.

Al Bates, HP district manager, and Larry Fruge, HP customer engineer, coordinated the technology and helped Daniels learn to use it. Says Bates, “When the PC for Derrick arrived, Larry quickly realized this was more than just an installation. He explained to me that the PC was designed to control the lights, doors, TV, radio and other appliances in Derrick’s home. Not only would he need to test the system, which required learning all the third-party software, but he would also need to teach

Derrick how to use it. Although this would take considerably more time than we had anticipated, Larry didn’t hesitate.”

Fruge elaborates, “I spoke with Michael Takemura, the director of HP’s Accessibility Program, and he gave me some background information. I quickly realized this would involve more than an installation and demonstration. I needed to load the third-party software that had been selected to allow Derrick to control the devices in his home—the hardware itself was not going to solve any of his problems. More importantly, I needed to learn how to use this software so I could show Derrick what these tools were intended to do.”

Fruge took the system home and installed it in his own home to test it. “I started teaching it to control the devices in my house, such as the lights and appliances,” he explains. “I was able to control items in some rooms but not in others. All new houses, as a general rule, have two AC phases from the input boxes. Some rooms are on one phase and some are on the other. As long as I stayed on the first phase I could control all the devices, but if I moved over to the second there was no communication.” Fruge knew that resolution of the phase problem was critical because the PC must send signals over the existing AC wires to communicate with household devices. The manufacturer suggested installing a device to join the two phases in the house’s electrical box.

Daniels’ home, the first ABILITY House smart home

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Assistive technologies in Daniels’ ABILITY House: HP Pavilion Media Center PC with Tracker; Ameriphone voice-activated speaker phone and FastAccess Internet, provided by BellSouth

Fruge met Daniels the day he was installing the computer system in the ABILITY House. “I heard an automated wheelchair. I stopped what I was doing and went into the living room and said, ‘You must be Derrick.’ He looked at me and said, ‘Who’s Derrick?’ I replied, ‘Don’t mess with me, Man, I know it’s you,’ and he laughed. Derrick is quite a kidder. He has a real good sense of humor, and that’s the way he seems to live his life. He also has a very positive attitude, which I noticed right away; it spoke volumes to me about his character.”

Fruge showed Daniels how to control devices in his home with the PC and mouse, a reflective dot placed on Daniels’ forehead. A third-party device called a Tracker sat on top of the monitor and followed the movement of the dot to control the cursor and open programs. By moving the mouse over certain on-screen keys, Daniels could even type Word documents. He also received a professional voice-activated diction package, which was his favorite piece of software. By the next day, Daniels was able to control all the devices, including lights that had been installed outside to give him a sense of security.

Daniels and Fruge continued to work together. “I went back not as a representative of HP, but on my own,” Fruge states. “HP had already gone way beyond what we had been asked to do. I had come to like Derrick. He seems to have an instant friendship with everyone he meets, and we just clicked. But what I noticed the most about Derrick was that the first time I talked to him about what the computer was going to do, he lit up like

a Christmas tree. I had not seen that in somebody’s face in a long time. To me, that is what makes life worth helping someone—when you see, for the first time, that ray of freedom: being able to do something without having to ask someone else to do it for you; being able to tune a radio on your computer for yourself, or control the volume, without asking somebody to turn the channels for you; being able to create a Word document by yourself. Seeing his face it was all worth it.”

Daniels’ next goals are college enrollment and a degree in computer science. “Moving from my mother’s house to the ABILITY House has been just amazing,” he relates. “At my mother’s house, I always had to wait for a strong friend to come over and carry me to the bathroom. I never thought stuff [like this lift system] could be built. I’m still learning to use my PC, but as far as controlling the appliances and the lights, I’ve got that down pat.” Accessing the Internet, in particular, is a new excitement. “I’m still getting used to having a computer. Sometimes, I will call my mother to send an email for me and then I remember, I can do this for myself!

“I used to come by here every day while they were building my house. It just amazed me how people would come from all over to help someone they didn’t even know. I saw the foundation, and then four months later the house was built. Sometimes I sit outside on my porch and I am overwhelmed because I’m sitting at my very own house.”

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n a spring afternoon 17 years ago, David Jayne was seated on an examination table as his neurologist began to speak: “You have amyotrophic lateral sclerosis, ALS. You might have heard it referred to as Lou Gehrig’s disease.”

As Jayne experienced increasing paralysis, his dependence on others increased. “I have hired many caregivers in my nearly two decades of disability,” Jayne comments. “They have ranged from fantastic to horrific.

The horrible experiences seem to leave a lasting impression, but when your total existence depends on others and you are in need of a caregiver, memory becomes short and you plunge in with someone else to try again.”

Jayne has endured no-shows, theft, deception, and several near-death episodes from care by people without the necessary skills.

During the 1990s Jayne became totally paralyzed and dependent on a ventilator and lost the ability to eat and speak. Living on a fixed income with his personal care needs growing, he struggled to afford qualified caregivers. He explains, “According to the government I am wealthy and do not meet criteria for additional financial assistance, so caregiver expense is entirely out-of-pocket. I struggle to make ends meet, a Catch-22 all too familiar to many Americans with disabilities.”

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In Jayne’s efforts to hire and afford caregivers capable of his care requirements, he used every medium imaginable to locate qualified candidates: classified newspaper ads, personal referrals, nanny services, agencies, mailbox fliers, articles, church bulletins and word of mouth.

Some methods were more successful than others, but all shared a major drawback: lack of accessible information for people with disabilities.

In early 2004, Jayne’s caregiver of four years was leaving to get married. Not pleased with the previous hiring methods he had used, he looked to the Internet, thinking somewhere in the cyberworld he would find a good resource for connecting with home health professionals.

To his disappointment, all Jayne discovered on the Internet were a few classified ads scattered here and there on various sites. These postings still lacked the detailed information he needed to make a timely, informed decision and hire the appropriate candidate.

An entrepreneur since childhood, Jayne found his wheels turning. He reasoned that if he as a consumer experienced these frustrations, caregivers must wrestle with the same problems.

From that frustrated search, RespiteMatch.com was born.

Jayne decided to create a platform much like a singlesmatch website, but instead for home health professionals

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and consumers in the home setting. He developed profile templates allowing extensive detail and containing many variables important to the consumer-caregiver relationship, such as the health skills needed and caregiver qualifications. Jayne wanted to create a one-stop shop that would meet all home health needs. He planned to grow the service slowly, starting initially within the United States, but rapid demand made it quickly international.

RespiteMatch.com is designed to meet the needs of people with all levels of disability, especially those with severe disabilities. At RespiteMatch.com, people in need of home care can view detailed caregiver profiles at no charge. Membership allows them to create their patient profiles, add caregivers to their My Favorites lists, receive email notification when their profiles have been added to caregivers’ My Favorites lists, and also view their personal MatchLists. The MatchList function generates suggested matches from information provided in profiles, preventing consumers and caregivers from having to look through hundreds of profiles. Users can also search by location with GPSpowered zip code searches. Consumers who subscribe to RespiteMatch.com receive all caregiver contact information and can use RespiteMatch.com's private email and email notification system.

added layer of security. If consumers want to e-mail prospective caregivers without giving out their personal e-mail addresses, they can send e-mail through the My Mailbox feature, and RespiteMatch.com will notify recipients they have mail waiting.

Services at RespiteMatch.com are continually growing.

Background checks—including DMV checks, credit checks, employment verification, professional license verification, education verification, criminal and civil records checks, sex offender checks and reference verification—are now available, as well as surety bonds (a relatively inexpensive form of financial protection against theft by domestic workers). For those unable to make a successful match through their individual searches, the RespiteMatch Plus service can assist more actively with job placement or finding caregivers. The site soon plans to offer home health products for purchase.

As a long-time recipient of home health care, Jayne feels he has unique insight into the consumer-caregiver relationship. He states that RespiteMatch.com is committed to providing the best possible service of its kind available on the Internet, and he welcomes feedback and suggestions. www.RespiteMatch.com

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Getting to Yes Have you ever played the children’s game Twenty Questions?

One person thinks of something, and the other player asks 20 questions in order to discover what the thing is.

Is it an animal? No. Is it a mineral? No. Is it a plant?

YES! Aha! Is it yellow? No. Is it green? No. Is it Red? YES! Is it a red pepper? No. Is it an apple? YES! And the game starts all over.

How many questions did it take to guess the right answer? (It’s okay, go back to the last paragraph and count.) How many guesses did it take? Certainly it didn’t take twenty. But if you say, “Eight,” your answer is incorrect!

It actually took only three questions to determine the object in question was an apple. “Is it a plant?” “Is it red?” and “Is it an apple?” were the only questions to confirm the answer. All the other questions indicated only what it was not.

The value of getting to a “yes” answer is even more evident when the importance of the solution is increased.

Plenty of movies revolve around a climax scene that features the hero trying to disarm a bomb by clipping the correct wire before a timer counts down and the device explodes. A quick game of Two Questions would work great if there were only two wires. Is it the black wire? No. So he can cut the red one. But what about when there are three wires and he has only one guess?

The right choice, and he wins; either of the two wrong choices…you get the idea.

As a children’s game, Twenty Questions is fun and choices are limited to a relatively short list with minimal consequences. But what about real life? Unfortunately, we frequently play another version of the Twenty Questions game, where the stakes are much higher.

Think how bizarre a Twenty Questions job interview would seem. Do you have a degree? Yes! A degree in business? No. A degree in finance? No. A degree in computer science? Yes! Are you a programmer? No. Are you a graphic designer? No. Do you develop Internet applications? Yes! Are you currently employed?

Yes! Do you work at IBM? No. Do you work at Oracle?

No…Can you imagine how impossible it would be to really get a sense of potential employees by looking only at the things they haven’t done, the degrees they don’t have or the places they haven’t worked? The only way to know a prospective employee and whether he or she can do the job is by the “yes” answers. The “no”

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responses provide some information about the candidate, but we cannot know the person’s true potential if we look at the “no” answers alone.

What are the implications for a person who has a disability? Can you imagine how ridiculous it would be for an employer to ask opera tenor Andrea Bocelli, who happens to be blind, about his vision? Or to ask Nobel Prize-winning physicist Stephen Hawking, who uses a wheelchair, if he could run? Unless Bocelli were applying for a job such as airline pilot, “Can you see?” has very little relevance, and unless a job requires running, “Do you use a wheelchair?” has nothing to do with what Hawking can do as an employee. Yet all too frequently, employers focus almost exclusively on the disability.

While a disability does have significance in some parts of a person’s life, as we come to know an individual who has a disability, the disability quickly disappears. We see the person, not the disability. For the most part, in life’s version of Twenty Questions, the “no” answers do not tell very much about who the person is. Whether in our own lives or in the lives of those with whom we interact, we must ask the questions that will get to “yes.”

by Bill Smith & John Chmela Founders, World Ability Federation www.worldabilityfederation.com

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