THE VOICE OF OVER 50 MILLION AMERICANS
$4.99 Volume2008/09 SCOTT HAMIILTON DEC/JAN
M ANAGING E DITOR Pamela K. Johnson
M ANAGING H EALTH E DITOR E. Thomas Chappell, MD
H EALTH E DITORS
Gillian Friedman, MD Larry Goldstein, MD Natalia Ryndin, MD
C ONTRIBUTING S ENATOR U.S. Sen. Tom Harkin (D-IA)
HEADLINES — Best Buddies, Diamonds in the Raw
HUMOR — Unfortunately, It’s All About Diet & Exercise
BEST PRACTICES — Microsoft
MANAGING PAIN — Latest Techniques
DRLC — Good News For Vets
CHILDHOOD OBESITY — The Skinny on a Big, Fat Problem
BRAIN TUMORS — From A to Z
C ONTRIBUTING W RITERS
Scott Hamilton p. 40
Paralympic Games Beijing
SENATOR HARKIN — Updating the ADA Extremity Games
Linda Boone Hunt Gale Kamen, PhD Valerie Karr Laurance Johnston, PhD Andrea Kardonsky Deborah Max Myles Mellor - Crossword Puzzle Paula Pearlman, JD Richard Pimentel Allen Rucker Kristen McCarthy Thomas Betsy Valnes
H UMOR W RITERS Childhood Obesity p. 22
George Covington, JD Jeff Charlebois Gene Feldman, JD
W EB E DITOR Joy Cortes
LOGAN — The Woman, The Magazine
SCOTT HAMILTON — Can’t Keep A Good Man Down
MOTORCYCLE VETS — Speeding Into The Danger Zone
NATIONAL INSTITUTES OF HEALTH — Cool Research
NEIL ROMANO — Assistant Secretary of Labor (Part 2)
CROSSWORD PUZZLE — Guess Your Best!
EVENTS & CONFERENCES
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P HOTOGRAPHY Microsoft p. 15
Hamilton Studio Michele K. Short
T RANSCRIPTIONIST Sandy Grabowski ABILITY’s Crossword Puzzle
For Camp Lejeune vets with a thirst for motorcylces, training is critical, p. 48
Dahvi Fischer Renne Gardner Sonnie Gutierrez Eve Hill, JD Glenn Lockhart Josh Pate Denise Riccobon, RN Maya Sabatello, PhD, JD Romney Snyder Jane Wollman Rusoff
DIRECTOR OF BUSINESS AFFAIRS John Noble, JD
MARKETING/PROMOTIONS Jo-Anne Birdwell Jacqueline Migell Andrew Spielberg Logan’s Brainchild p. 34
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ABILITY Magazine is published bimonthly by C.R. Cooper, 8941 Atlanta Ave. HB, CA 92646 (ISSN 1062-5321) All Rights Reserved. Subscriptions: $29.70 per 1 year (6 issues). Periodicals postage rates at Irvine, CA and at additional mailing offices. POSTMASTER: Send address changes to ABILITY Magazine, Attention Subscriptions Manager, PO Box 10878, Costa Mesa, CA 92627; Volume 2008/09 Scott Hamilton Dec/Jan Printed in U.S.A.
NON-PROFITS It’s all in your head. p. 32
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Chet Cooper The views expressed in this issue may not be those of ABILITY Magazine Library of Congress Washington D.C. ISSN 1062-5321 © Copyright 2008/09 ABILITY Magazine
least in some cases—include amputation, intellectual disabilities, epilepsy, multiple sclerosis, diabetes, muscular dystrophy and cancer. Together, these cases, as handled by the nation’s highest court, have created a supreme absurdity: The more successful a person is at coping with a disability, the more likely it is for a court to find that he or she is no longer sufficiently disabled to be protected by the ADA. If that is the ruling, then these individuals may find that their requests for reasonable accommodations at work can be denied. Or that they can be fired—without recourse. This is the Catch 22 that confronts countless people with disabilities, and is clearly not what I intended, nor what Congress intended, when we passed the ADA in 1990. It boggles the mind that any court would rule that, for instance, multiple sclerosis or muscular dystrophy, is not a disability covered by the ADA. But that is where we are today.
REVISITING THE ADA Dear ABILITY Readers, Recently, the ADA Amendments Act was signed into law, and I was proud to be its chief sponsor. When it is enacted in early 2009, the legislation will allow us to fulfill the original promise of the Americans with Disabilities Act. As you may know, the ADA was one of the landmark civil rights laws of the 20th century, and helped us make enormous progress in advancing the four goals of the ADA: equality of opportunity, full participation, independent living and economic selfsufficiency. Despite these strides, we have left some people with disabilities behind. The problem is a series of Supreme Court decisions, which have greatly narrowed the scope of who is protected by the ADA. First of all, these cases held that mitigating measures, such as medication, prosthetics, or other assistive devices, must be considered in determining whether a person has a disability under the ADA. Secondly, they asserted that there must be a demanding standard in assessing whether an individual has a “disability.” As a result, people with conditions that common sense tells us are disabilities, are being told by courts that they are not disabled, and thus not eligible for protections under the law. When I explain to people what the Supreme Court has done, they are shocked. Impairments that the Court says are not to be considered disabilities—at 6
These Court decisions have restricted the coverage and diminished the Civil Rights protections of the ADA, especially in the workplace. As a result, lower court cases have too often turned solely on the question of whether the plaintiff is an individual with a disability, rather than the merits of the discrimination claim. They may not have considered whether an adverse employment decision was impermissibly made on the basis of disability, whether reasonable accommodations were inappropriately denied, or whether qualification standards were unlawfully discriminatory. The ADA Amendments Act will restore the proper balance and application of the ADA by clarifying and broadening the definition of disability, while increasing eligibility for ADA protections. It is my expectation that under this legislation, people who may have been denied coverage under the earlier version of the ADA, will now be covered. And this is important, particularly in an employment context because, according to recent data, more than 60 percent of individuals with disabilities are unemployed. Many want to work and, if they given the opportunity, prove exemplary employees. Sometimes, all they need is a chance—and a reasonable accommodation. The ADA Amendments Act renews our promise to all Americans with disabilities by taking several specific and general steps, which direct courts toward a more generous meaning and application of coverage under the law. Specifically, it:
The ABILITY House program, working with, ABILITY Magazine and home building organizations reaches out to volunteers with disabilities to help build accessible homes for low-income families with disabilities. We are seeking corporations, foundations and churches to sponsor more homes. We can build in nearly 100 countries. Please contact us for more information. email@example.com www.abilityawareness.org —Overturns the basis for the reasoning in the Supreme Court decisions that have been so problematic for so many people with very real disabilities. —Fixes the “mitigating measures” problem by clearly stating that mitigating measures are not to be considered in determining whether someone is entitled to the protections of the ADA. —Makes it easier for people with disabilities to be covered by the ADA by expanding the definition of disability to include many more major life activities, as well as a new category of major bodily functions. This latter point is important for those with immune disorders, or cancer, or kidney disease, or liver disease. —Rejects the current EEOC regulation that says “substantially limits” means “significantly restricted” as too high a standard, and directs that the regulation be rewritten in a less stringent way. —Revives the “regarded as” prong of the definition
of disability, and makes it easier for those with physical or mental impairments to be able to seek relief if they have been subjected to an adverse action because of their disability. —Contains a broad construction provision, which instructs the courts and the agencies that the definition of disability is to be interpreted broadly, to the maximum extent permitted by the ADA. People with disabilities deserve equality, opportunity, access and freedom. On January 1, 2009, when the ADA Amendments Act goes into effect, we will continue to work toward the day when this will become a reality for all Americans. Sincerely,
Senator Tom Harkin www.harkin.senate.gov
fter 20 years, the Best Buddies Ball has come to an end. This year the popular fundraiser was the most successful ever, with $3.35 million in ticket sales and auction revenues.
Performances by Kenny G and Cirque du Soleil provided the black-tie dinner entertainment for 900 guests, who gathered under backyard tents at the estate of Sargent and Eunice Kennedy Shriver. Celebrities on hand included Randy Jackson, Miss Universe and Robert De Niro. There were also plenty of Kennedy and Shriver children who had grown up during the two decades that the ball was held. Sargent Shriver, the Democratic vice presidential nominee in 1972, is the founding director of the Peace Corps, while Eunice Kennedy Shriver, sister of President Kennedy, is founder of the Special Olympics, and remains a longtime advocate for people with intellectual disabilities. Both greeted ball guests in the foyer of their home for the last time; the 16,000-square-foot Georgian manse is being sold for $11.8 million. Anthony Shriver, their son and founder of Best Buddies, plans to replace the annual gala with a D.C. cycling challenge. “After 20 years of success,” he said, “you’ve got to reinvent yourself.” The event honored Sheikha Mozah Bint Nasser Al Missned, the first lady of Qatar, who founded her country’s Shafallah Center for Children with Special Needs. She is credited with raising awareness of people who are intellectually disabled. “They are the true leaders,” she said as she accepted her leadership award. Sheikha Mozah Bint Nasser Al Missned
THEY’RE JUST PLUM HELPFUL
study published in the British Journal of Nutrition this month suggests that eating dried plums slows the development of atherosclerosis. An inflammatory disease better known as “hardening of the arteries,” atherosclerosis leads to cardiovascular disease and stroke, and is the leading cause of death in our society. Although numerous studies explore the effects of fruit and vegetables on serum cholesterol, few look at atherosclerosis. This study appears to be the first examining the impact of a fruit on this type of disease. “This study breaks new ground by showing a significant reduction in the development of a major inflammatory disease,” says lead researcher Dan Gallaher, Ph.D, who is professor of nutrition in the Department of Food Science and Nutrition at the University of Minnesota. “It also strengthens the notion of eating fruit, in particular dried plums, as a preventive measure against heart disease.” Dried plums, often touted for their digestive health benefits, are emerging as a heart-healthy addition to any diet. Previous studies show that dried plums reduce LDL cholesterol in humans and that the fiber pectin found in dried plums lowers cholesterol in animals. The fruit has nutrients, including potassium, magnesium and boron, as well as a high antioxidant score, giving dried plums numerous health benefits from helping maintain desirable blood sugar levels to possibly reducing skin wrinkles.
“I consider dried plums a super fruit because of their unique health benefits and also because they’re superaffordable, delicious and fit easily into a busy lifestyle,” says Dave Grotto, RD, LDN, author of 101 Foods That Could Save Your Life. The study was conducted over a five month period on a strain of mice that develop atherosclerosis more quickly than normal. The amount of dried plum powder shown to significantly reduce the area of atherosclerotic lesion was equivalent to eating 10 to 12 dried plums a day in a human diet. The study revealed a reduction in the area of atherosclerotic lesions in the entire arterial system as well as the aortic arch. californiadriedplums.org
he Child King is the inspirational film tale of Jeremy (Peter Johnson), a teenager with Down syndrome who embarks on a journey to the North Pole with his younger brother Jarret (Will Kellem). Along the way, they encounter a host of colorful characters, but none more fascinating than a large man with a snow-white beard, who mysteriously appears in various guises and offers to guide the boys.
Diamond In the Raw Foundation’s mission is to educate and expose at-risk teen girls to various careers in the entertainment industry. La Faye Baker and Jadie David, co-founders, served as executive producers, and Romell Foster-Owens produced and wrote the show. diamondintheraw.com
The narration that parallels their adventure is their mother’s ancient bedtime fable of a child prince, banished for his disabilities by an intolerant king. Proceeds from the sale of the DVD ($19.95) and related merchandise will go to The Child King Foundation, created to help individuals and organizations that give financial grants to those with intellectual disabilities. Screenwriter Jeff Kerr wrote the film during a period of time when he was an agent with the Bureau of Alcohol, Tobacco and Firearms, and had down time during the infamous 1993 siege of David Koresh’s Branch Davidian compound in Waco, TX. On the day of his departure for Waco, he had a chance encounter with a fellow agent whose captivating, energetic son had Down syndrome; that 3-year-old child is the inspiration behind his film. The Child King recently won a KIDS FIRST! Feature Films for Families Award. It has been endorsed by the Special Olympics, Best Buddies and the Coalition for Quality Children’s Media. It was also an official selection at the LA International Children’s Film Festival. thechildking.com
THEY DO THEIR OWN STUNTS
t their inaugural Stuntwomen’s Awards recently, the Diamond in the Raw Foundation celebrated outstanding women working in the stunts, action, athletics and extreme sports areas of television and film. Actress Linda Hamilton and basketball champion Lisa Leslie were among the honorees, and actress Angela Bassett served as a special presenter. The organization gave educational scholarships to deserving teens who have risen above personal obstacles to become high achieving students. Among the six winners was Carolina Ramos, an 11th grader at the Marlton School for the Deaf. In addition to the scholarship, Carolina was excited to meet some of the celebrities especially, “because I have a dream of maybe one day becoming an actress myself.” At the event, Kristin Vontrese Lee, a 12th grader also at Marlton, performed the “Diamond in the Raw” song in American Sign Language. “I never thought it would happen,” Kristin said, “but I signed and danced to the song with a group of girls who were singing with their voices. They made me feel so inspired!”
Diamond In The Raw Scholarship Winners show off their plaques at the recent Hollywood Stuntwomen’s Awards Luncheon in Bel Air, California. (l to r) Carolina Ramos, Marlton School for the Deaf; Denise Sabal, Camp Kenyon Scudder School; Paige Hurd, Actress, Everybody Hates Chris; Candice Readeux, Cal State Northridge; Jazzmin Perez, El Camino High School; Joy Hubbard, Taft High School
t the, 2008 DAN! conference, one session explored the impact of environmental toxins , such as insecticides, on autism. Dr. Paul Shattock suggested that genetic susceptibility can influence an individual’s sensitivity to these toxins. He asserted that one must take into account both the country of origin and the ethnicity of the individual being exposed. Cindy Schneider, MD, offered the audience information on the toxicity of different heavy metals, such as lead, cadmium, arsenic and mercury, as well as the effects of alcohol and cigarette smoke on mother. She noted the presence of many associated symptoms in autism, such as digestive problems, allergies, sleep disorders and hyperactivity, and spoke about the way toxins can lead to neurological, immunological, and gastrointestinal problems. She also extended the concept of environmental toxins to include the study of combined toxicities, and explored the effect of exposure to them at different developmental time windows. Richard Deth, PhD, discussed Autism Speaks-funded research aimed at providing a more detailed understanding of the body chemistry that can potentially be affected by environmental toxins. Deth described the folate and vitamin B-12 dependent methionine synthase system, highlighting how environmental stressors such as heavy metals disrupt biochemical pathways. He hypothesized that disruptions at key points of the methionine synthase system can result in autistic symptoms. Among the factors believed to contribute to autism are genes, ethnicity, environmental toxins, the immune system, infections and diet. Conference speakers emphasized the need for future autism studies to examine the interaction among these different factors. autismspeaks.org ABILITY 9
Whenever you go to the doctors, for whatever ailment, the answer is always the same. You need to change your diet. You need to exercise more. “Hey doc, I’m paying you to write prescriptions, not add to my workload.”
I don’t know about you, but I’m sick of dieting and exercising. It’s just such a pain-in-the-butt having to do that stuff once or twice a month. I got better things to do… like eat and not exercise.
Is he right? Of course he’s right, but like all lazy Americans, I want the quick fix. Just give me a pill that exercises my body while I sleep. Could you imagine how much money this country could save on medical care if everyone decided to diet and exercise? We would all have extra cash to spend on big screen TV’s and chocolate cake.
eople wonder what life is all about. What our purpose is. The answer is simple. It boils down to diet and exercise. Funny. Diet and exercise is really the answer to everything. “My hair is such a mess today. My car won’t start. I got too many bills.” Yeah, well it must be your diet and lack of exercise.
I hate to admit it, but I do feel better after I exercise, and not just because it’s over with. After a workout, I always wonder why I don’t do it more often. Before a workout, I always ask myself what the hell are you doing? I could be home watching cartoons. Here’s a typical conversation between my mind and my body:
is fun but alcohol has a lot of calories. So when you drink to escape the feeling of being fat, you’re compounding the problem. The buzz leaves you, the blubber doesn’t. There are only two things you’re supposed to eat: fruits and vegetables. That’s it. Wow, does the fun ever stop?
MIND: You in the mood to work-out?
The devil is in the desserts. Maybe one day a week I should just eat desserts, and get them out of my system. Just stuff my face with carrot cake, chocolate moose and ice cream ‘til I puke Hershey syrup. And that delightful invention of chocolate is chalk full of temptation - ask Count Chocula. I don’t know what it is, but dinner doesn’t finished until you get that dessert in you. If you’re out to dinner you tell the waitress you just want to look at the dessert tray. As she points out which one is her favorite, she pushes the tray towards you like a heroin bag. To spread the guilt you agree to split it with your dinner partner, claiming you just want to try it as you keep mumbling “just one more bite.” If you’re at home, to avoid the skunk eye you wait ‘til your spouse goes to the bathroom, and then you raid the Rocky Road ice cream. You get the skunk eye when chocolate is noticed smeared around your mouth and a mini marshmallow stuck between your teeth. “I didn’t do anything,” you mumble.
BODY: Yeah, well, I’m kinda comfortable here on the couch. Let’s not, and say we did. MIND: You know, we really should go. Don’t you want to feel better about yourself? BODY: I don’t know. I’m actually feeling pretty good right here. MIND: You’re going to get fat. Make that fatter. BODY: Looks aren’t everything. Besides, fat is just a state of mind. MIND: No, it really isn’t. I know. I’m a mind. Fat is that mound of flesh bubbling over your belt. It’s real and disgusting. BODY: I hear ya. Can you grab me the remote control? Exercising just isn’t fun. I know people who claim they like it, but come on, I was born at night but not last night. Who you trying to fool? It’s funny to watch people at the gym, walking around aimlessly, blowing out air as if it’s a work out to just walk around aimlessly. I like the ones who just stretch for an hour then call it a day. “That’s good enough for me. I don’t want to be sore tomorrow.” If you’re going to go to the gym at least do something, even if you just check out the babes. Diet is one of the most widely written about topics. Bookstores are littered with miraculous ways to lose weight. There’s the Adkin’s Diet, the South Beach diet, the Beer diet, which I’m definitely willing to give a whirl. Dieting means you eat anything you want except the things you like. You can have pizza, as long as it isn’t made with cheese or bread. With a good diet, you learn to substitute particular items. For instance, instead of making spaghetti with yummy pasta, you replace it with strands of celery and carrots. Wow, does it get any better than that? All the healthy liars tell you, you can’t even taste the difference. I’d rather eat my diet book. Sure, on a diet you may lose weight, but sooner or later it always finds its way back home.
So what’s the best way to avoid gaining weight? Clean out the cupboards. You know which ones. The little bread drawer with the Doritos, Sun Chips, Cheese Doodles, Snowballs and Ho’s Ho’s. Also that pantry with the Little Debbie Snack Cakes, the liters of soda, and the banana Moonpies. Stay away from those Keebler elves! It’s all got to go. Why? Because you’re human, and humans have no discipline. We’re all sick people in need of a junk food fix. The truth of the matter is I despise diet and exercise, even more than reading. It’s bad enough having to work all day, but then to have to come home, eat a bowl of vegetables and climb on the treadmill. There’s got to be more to our existence. So the big question becomes, do I want to enjoy life or live longer? But if I live longer, I’ll be just stuck with more years of dieting and exercising. “Ham on a Roll”
by Jeff Charlebois
As a rule, anything that tastes good is bad for you, and anything that taste like crap is good for you. Not many people enjoy munching on a brochelli stem. It’s potato chips, baby! That’s where you find peace. If I whip up a vegetable juice blend, you bet a shot of vodka’s going in there. There’s got to be something in it for me. Drinking ABILITY 11
Cooper: Do you think that products coming out of Microsoft these days will be more accessible, even in their default mode?
Chet Cooper: Let’s start with a really tough question…
Hodne: Yes. When we released Vista, we asked throughout the company what we needed to do to make sure that we had the right focus, which included the accessibility component. For instance, there are more than 300 specialty assistive technology products available for Windows computers such as screen readers, screen magnifiers and on-screen keyboards, which offer innovative solutions to help people who have impairments and disabilities to use their desktops and laptops effectively. We work closely with members of the Microsoft Assistive Technology Vendor Program to ensure that a wide range of assistive technology products are compatible with our major Microsoft product releases.
computer’s accessibility features make it easier to see, hear and use, while allowing for a custom fit, so to speak. Microsoft’s Accessibility Business Unit (ABU) is the go-to department when it comes to making the company’s products more accessible. It also ensures that Windows remains a platform that other companies use to develop innovative assistive technologies. Norm Hodne, Windows’ Accessibility Lead for Microsoft, recently gave Chet Cooper the 411 on the ABU.
Hodne: Okay. Cooper: If a train left Boston going 50 miles an hour… Hodne: (laughs) Cooper: Okay, this one’s pretty tough, too: Why is accessibility such a challenge? Hodne: I think it’s because there are various user interfaces [UI] that have different ways of presenting information to the person sitting at his or her computer. UIs are all so varied and use different controls, there has to be a way to standardize assistive technology programs, which has been hard. So we try to use programming to work around these constraints, sometimes using an interface: something between two applications that help them talk to each other. Each step requires a combination of programming techniques, which adds to the complexity of the task. Cooper: People have been trying to deal with accessibility issues for years. I’m surprised that it continues to be such a hurdle. Is it because certain people embrace the challenges on the front end, while others only try to adapt a program after it’s already been designed? Hodne: I think that is a significant factor, especially if you look at websites. In the past, I don’t think a lot of web developers thought much about accessibility. Fortunately, more and more are starting to have the foresight to develop different types of tools that have accessibility built into them. If you use that tool to generate a website, it should be a lot easier for those who need it to use it. Cooper: How long have you been involved in the accessibility realm?
What’s great about user interface automation is that it can automatically recognize a new custom control. Internally, it’ll respond like Oh, I’ve never seen this control before, but because of how I’ve been programmed, I can figure out how I should interact with it and make it work. Therefore, different applications should automatically be able to adapt to a control that they’ve never “seen” before because they’re using the automation. I think that’s a huge step forward in being able to make it easier for end users who won’t always have to wait for that next version of Window-Eyes or whatever their favorite assistive technology tool is to be able to access the new applications. We’re really excited about that.
Cooper: When will that come out?
Plus, with user interface automation, we’re getting 10 times the performance that we were getting from Microsoft Active Accessibility. So when we do a standard screen-scraping on an application, it’s 10 times faster than what we’re seeing right now, which should dramatically improve the performance for end users.
Hodne: We haven’t determined that yet.
Cooper: Could you explain that a bit more?
Hodne: About two and a half years. I was in the Accessibility Technology group here at Microsoft when we were developing Vista, and now we’re working on the next version of Windows.
For the Windows division, our goal is to make our operating system the most accessible it can be for every single edition. We always seek to improve. For Vista, we implemented an application programming interface, which is a substantial step forward from the Microsoft Active Accessibility (MSAA). Though the latter is still around and will be for a long time, it didn’t have the capability to adequately expose these new user interfaces, such as Silverlight or Windows Presentation Foundation (WPF) applications. WPF, for example, is used for the New York Times reader, which is a Windows application that allows a user to download full editions of the publication onto a desktop computer, where they can be read offline in a familiar, yet customizable layout. So we had to revisit how we thought about accessibility APIs so that they could be flexible enough to deal with these new user interfaces.
Hodne: Let’s say you have a Microsoft Word application. The screen reader is going to go through and read the entire page and figure out what’s on this page, what type of buttons, what type of text, etc. That process of reading through the page is called “screen scraping.” Today we’re seeing that the user interface automation is 10 times faster than with Microsoft Accessibility API. We anticipate a huge benefit to end users, once this gets widely adapted within the industry. Cooper: What other concerns did you consider, beyond the speed of the system? Hodne: As I was saying earlier, if you go into Microsoft Word, you start to see all these compound controls. It might be a list box that has a combination of different functionality than what you would have seen in the past. For instance, maybe you just saw a list box in the past, but now it’s got a button that has a drop-down to it that provides additional information, so you can filter out what you don’t want in your list. In the old system, all of those new controls were hard to describe. It’s now possible to describe those in the new system in a fairly easy and straightforward way. Cooper: Going back to websites, in the old system you had to be concerned with the way you built tables for screen readers to know if they were reading html code and such. Is this affected as well? Hodne: In the case of web pages, our Internet Explorer group has been working through the World Wide Web Consortium (W3C) and their Web Accessible Rich Internet Applications to find what that standard would be for web developers. We’ve taken that standard and said, “OK, what would we need to do to be able to implement that web standard through UI Automation?” We’ve also published that information on the web and provided it to all the assistive technology vendors, the Accessibility-Interoperability Alliance (AIA) members and the like, to let them know that this is how you would use UI Automation to be able to implement an accessible web page, or to be able to read an accessible web page that’s using the W3C standard. No solution is perfect, but what we’re doing is taking this new W3C standard and seeing what we can do in the future to be able to support all the different functionality that they’re calling out in their standard. We talked to IBM about it, and we looked at the IAccessible 2 specification that they’re working with through the Linux Foundation. There are issues there as well. So we have a really good understanding of what those issues are, and we’re working with the Linux Foundation and working again with the W3C through the Internet Explorer people to resolve those issues. That’s one of the reasons for the AIA. We set it up because we were having these conversations individually with assistive technology vendors such as IBM and
Sun Microsystems. Or we’d call GW Micro, an adaptive technology vendor of products for the visually impaired, and say, “Hey, we’re looking at this, and we see that there are some issues here. How would you want to implement this in your products?” Then we’d talk to IBM and say, “Hey, we’re looking at this specification, and we see that there are issues. How do you think we should work around these issues?” Everyone had input and different preferences on the right way to go. We decided that we really needed to get an industry group together that could deal with UI Automation issues, and work on harmonizing the specifications to implement them correctly across platforms, so it didn’t matter whether it was Windows or Apple Macintosh or Linux. We wanted to look at all the different specifications in order to find the best way to create accessible applications. That’s how AIA originally got started. Chet Cooper: What’s the difference between ATIA and AIA? Hodne: Well, they have similar membership, but the AIA is a technologically-focused organization where we’re really getting down to the nitty-gritty of developer specifications. That’s what we focus on. We’re not getting into policy or any other things related to the assistive technology world, which is really some of the other venues that ATIA gets into. I personally am not part of that decision-making process or that organization, but Rob Sinclair is because of his role as director of the Corporate Accessibility Group at Microsoft. Cooper: Are you familiar with Gary Moulton’s work. Hodne: Gary has been focused on usability and accessibility as it relates to aging. He holds regular conferences internally here at Microsoft, trying to raise the awareness of the impact of aging through all the different product groups and in Microsoft research. It’s helped us realize that accessibility must go beyond addressing the needs of those with severe disabilities. It’s anybody with mild and/or temporary disabilities as well, such as arthritis or a shoulder injury. In fact, when we were getting ready to ship Vista, Rob had his shoulder in a sling for six weeks and needed assistive technology to do his job. Cooper: I’m using bigger font sizes these days, which I’m sure is due to aging. Hodne: Exactly. We want to make sure that everything we do moves our technology forward to help people use our systems. So when we think about how we’re going continued on page 64 ABILITY 17
s we close our series on pain, let’s recap what we’ve covered. Our focus has mainly been on the chronic variety, which may never go away and which permanently disables large numbers of people in our society and around the world. Acute pain, on the other hand, is its opposite, and usually is the result of a disease or injury that goes away as we heal. We began this series with the two most common ailments: back pain and headaches. We then covered some of the more unusual, but well-known chronic pain syndromes, namely Trigeminal Neuralgia, Fibromyalgia and Complex Regional Pain Syndromes. One theme that has emerged is that chronic pain syndromes are difficult to treat. I have reserved this last installment to talk about some of the more technical methods used to treat chronic pain syndromes; some have been around for a while, and others have arisen from recent technological advances. As before, there are many new terms to understand. One is nociceptive pain, which refers to abnormally persistent stimulation of otherwise normal sensory receptors in our body. We have many types of sensory cells, each of which responds to a different type of stimulus. For example, there are receptors for heat, touch and even the position of our joints. It is believed that these receptors can begin to transmit pain sensation when they are not supposed to, particularly in cancer patients. Over the years, atypical pain has prompted physicians to look for other ways to manage it. These modalities have ranged from electrical stimulation of the brain to actual destruction of carefully selected areas of the spinal cord and brain. While the former is relatively low risk, the latter requires precise understanding of how to avoid causing more harm than good. Stimulation of the spinal cord is the most common technique used to address the most difficult chronic pain cases. It has limitations, not the least of which is a poor understanding of how and when it works (which is not often). The up side is that it is not particularly risky. It requires thin electrodes—wires that carry electrical current—to be inserted in the low part of the back, inside the bones of the spine, but outside of the spinal cord. Wires then pass from the electrodes, under the skin, to a programmable battery pack about the size of a hockey puck, which is implanted under the skin of the abdomen. The cool thing is that the battery back is a little computer that can be programmed without opening the skin. A device is simple held over the area
where the pack is implanted and digital input can adjust the settings topically. (Any Trekkies in the group?....remember the Tricorder?...Hmmmmm?) Before I get to more recent approaches of stimulating the brain to control pain, let’s talk about techniques that have been in use for many years that involve destroying carefully selected parts of the brain and spinal cord. Most of these have been abandoned because they are not very effective and they have obvious potential for unsavory side-effects. For example, weakness in the arms and legs and loss of sensation are often involved. These procedures have often been used for pain related to cancer, and since that disease has traditionally been fatal in a relatively short period of time, the benefits generally outweigh the side effects. In more recent years however, cancers have been better controlled, patients live longer, and therefore limited effectiveness, coupled with troublesome side effects make these treatments less popular. On the other hand, destruction of small, carefully selected areas of the brain are pretty effective in controlling the abnormal movements associated with Parkinson’s disease, for example. Micheal J. Fox has had one of these procedures. A similar technique has been used with some success in the treatment of severe chronic pain associated with cancers that are unresponsive to all other types of treatment. However, the technique was never approved by the Food and Drug Administration, and all of the experimental investigations have been cancelled.
Small stimulators placed in precisely determined areas deep in the brain are now being used to mitigate the effects of Parkinson’s disease. These have also been tried with limited success in the treatment of chronic pain. Phantom limb pain, an enigma in the world of human physiology, is one of the types of chronic pain for which deep brain stimulation has had shown success. Those who experience this phenomenon report excruciating and uncontrollable pain in a limb that has been amputated; yes, that’s right, in a limb that is no longer there. The situation has most commonly occurred over the years in soldiers with war injuries. But other types of accidents and diseases can lead to amputations as well. Fortunately, only a small percentage of amputees experience phantom limb pain. The latest treatment innovation is stimulation of the surface of the brain. Oddly enough, if electrodes can be placed just right on the surface of the brain, yet under the skull, so that muscle twitching can be induced in the area of the pain, it may be relieved. Well, by now you have probably realized that human physical pain, especially chronic pain, is a complex topic to which volumes have been devoted. While justice cannot be done to this topic in a series of six essays, we hope you have gotten a sense of the breadth and depth the subject, and perhaps new ideas to treat your own pain or that of friends and family. by Thomas Chappell, MD ABILITY 19
NEW VISTAS FOR VETS
housands of American veterans are returning from Iraq and Afghanistan with physical and mental disabilities. Many face challenges that they never expected. For example, veterans with acquired traumatic brain injuries (TBI) or post traumatic stress disorder (PTSD), often find that there are insufficient community-based services available to them.
Access to medical care, benefits and housing for these vets has been limited and often chronically delayed; some returning soldiers have been unable to get jobs and have faced homelessness. These troubles are further exacerbated by the fact that many veterans with newly diagnosed disabilities may not be aware of their legal rights under state and federal disability laws, and also may not know about social, health and other available resources. Here we’ll explore some of the newer laws and services available to veterans with service-related disabilities.
NEW COMPENSATON In 2008, Congress enacted the Veterans’ Compensation Cost-of-Living Adjustment Act (VCCLA) with increases of 4.8 percent to 5.8 percent for disability compensation for qualified veterans with military-related disabilities. The act also increases compensation rates for, among others, some dependants of veterans with disabilities, and survivors of deceased veterans who acquired disabilities while serving their country.
EXPANDED LEGAL SERVICES In December 2007, the Veteran’s Pro Bono Consortium was established through the National Veterans Legal Services Program (NVLSP), to provide veterans with legal representation for such issues as obtaining (or maintaining) disability benefits. Many major law firms throughout the US have also formed coalitions to provide pro bono legal representation to veterans with disabilities. At this writing, the NVLSP was also planning to begin a legal advocacy program for Iraq and Afghanistan war vets: Lawyers Serving Warriors (LSW) will provide pro bono legal services including help with disability claims, veterans’ benefits and discharge from military service.
EXPANDED SERVICES New educational and community-based advocacy services are now available to vets with disabilities, including information on benefits available to those with spinal cord injuries and how to obtain them as provided by the Paralyzed Veterans of America (PVA), which also offers educational outreach to Hispanic veterans with spinal cord injuries. A group of attorneys and students at the University of Virginia Law School opened a law clinic in March 2008, to provide legal representation to veterans who have become disabled as a result of their military service. There may be other state and local volunteer lawyers and law school clinics available. Call your state bar association, or check out its website to see what resources may be available.
LAWS, REGULATIONS, GUIDELINES In 2008, the Veterans’ Mental Health and Other Care Improvements Act was passed to improve services provided by the Veterans Administration. Some of these include expansion of: • substance abuse treatment • enhanced care for veterans with a mental illness and/or substance abuse problem • pilot projects on transition assistance services for families of veterans with disabilities • enhanced health services for veterans living in rural areas • epilepsy centers • comprehensive chronic pain policy • appropriations for veterans at risk of becoming homeless
HOUSING GRANT OPPORTUNITIES: Recent legislation makes it easier for veterans with service-connected disabilities to obtain accessible housing. Specifically, a federal law authorizes the Veterans Administration to provide housing grants, such as the Specially Adapted Housing (SAH) grant and the Special Housing Adaptation (SHA) grant, to veterans with service-related disabilities. The law was changed to permit qualified veterans to receive multiple grants to pay for either construction of new accessible homes or modification of existing ones. Additionally, the statute now provides for Temporary Residence Grants that permit eligible veterans with 20
service-connected disabilities to receive funding to make their temporary housing accessible.
EMPLOYMENT LAW GUIDELINES: One goal of the Equal Employment Opportunity Commission’s (EEOC) guidelines is to support employment of vets with service-related disabilities. These guidelines lay out the requirements of employers regarding veterans with service-related disabilities, both under the Americans with Disabilities Act, and under the Uniformed Services Employment and Reemployment Rights Act.
PROTECTION FROM CREDITORS: In New York, the recent Exempt Income Protection Act shields veterans and others with disabilities who receive government financial benefits, from unlawful collections practices imposed on them by creditors. This new law prevents creditors from freezing the bank accounts of debtors who receive income that is exempt from collections proceedings, including individuals receiving benefits from the VA. While this is currently a law only in New York, it may serve as a model for other states. The resources included in this article can’t solve all problems facing veterans with disabilities returning from war, but they can make a significant difference in the every day lives of vets and their families. by Deborah Dorfman, Esq. deputy director of the Disability Rights Legal Center To request a pro bono attorney from the Consortium, contact the National Veterans Legal Services Program at (202) 265-8305, ext. 152. Veterans Administration va.gov Department of Veterans Affairs homeloans.va.gov/sah.htm EEOC guidelines eeoc.gov
National Disability Rights Network (NDRN) 900 Second Street NE, Suite 211 Washington, DC 20002 Phone: (202)-408-9514 Fax : (202)-408-9520 TTY: (202)- 408-9521 ndrn.org
Assoc. of Service Disabled Veterans asdv.org Blind Veterans Association bva.org Disabled American Veterans Headquarters Cincinnati, Ohio (877)-I Am A Vet (877-426-2838)
National Veterans Legal Services Program and the Veteran’s Pro Bono Consortium Washington D.C. (202) 265-8305
California Paralyzed Veterans Association 5901 East 7th Street, Bldg. 150, Room R-204 Long Beach, California 90822 (562) 826-5713 cpva.org
U.S. Department of Housing and Urban Development 451 7th Street, S.W. Washington D.C., 20410 (202) 708-1112 TTY: (202) 708-1455 www.hud.gov
Disability Rights Legal Center 919 Albany Avenue Los Angeles, CA 90015 (866) 999-DRLC TDD (213) 736-8310 disabilityrightslegalcenter.org
U.S. Equal Employment Opportunity Commission 1801 L Street, N.W. Washington, D.C. 20507 800-669-4000 TTY: 800-669-6820 eeoc.gov
s Sharon Rowland’s weight climbed to 210 pounds, she worried that her children would follow her example, especially her oldest girl.
“She likes to eat, and I was concerned about that,” Rowland says of Kylah, now 12. “I also wondered if she was getting enough exercise.” It’s a concern shared by parents across America as childhood obesity rates for children six to 19 have more than tripled since 1980, according to the Centers for Disease Control. Packing on the pounds in youth may cause a range of typically “middle age” health diseases to strike much earlier. “Type 2 diabetes used to be called ‘adult onset diabetes,’” says Wes Alles, director of Stanford Health Improvement Center in Palo Alto, CA. “But the name had to be changed because we were seeing younger and younger children with the condition.” In fact, some experts have warned that this could be the first 22
generation that won’t outlive its parents. Loss of self-esteem, eating disorders, depression, social isolation and learning problems are additional ills that can land at the doorstep of obese children. Even without wading through knee-deep statistics on the subject, Rowland gleaned that it was important to monitor the diet of all four of her children, who, in addition to Kylah, include daughters Kennedy, 10, and Kamryn, 7, along with son Raymond, 4. “It’s hard as a single parent,” she said, “but I knew that there were better ways to eat than the drive-thru at McDonalds.” So when an administrator at her local Indianapolis YMCA approached her about taking part in the Healthy Family Home Program, she signed up. Earlier this year, the Rowlands completed a four-month pilot study, which was also conducted simultaneously in Chicago, New York City, San Diego and Marshalltown,
From left: Sharon Rowland and her children (clockwise), Raymond, Kylah, Kamryn and Kennedy, dropped a few pounds and gained greater closeness during a YMCA fitness program. Center: Wes Alles, a senior research scientist at the Stanford Prevention Research Center. Above right: Kristine Courtney, MD, helped develop the Y program and also encourages employees at Eli Lilly, her employer, to push away from their desks periodically and get in a few leg lifts.
IA. More recently the Eli Lilly funded program went nationwide at 1700 YMCAs.
WORKING TOGETHER In sessions with other families, the Rowlands learned to make healthier choices, scrutinize food labels and avoid the evil god of trans fats. Sharon Rowland lost 25 pounds, and found that the Healthy Family kit was easy to incorporate into her and her children’s daily routine. The opening pages of the colorful pamphlet provide tips for youth to take an active role, not only in planning and preparing meals, but also in choosing family activities. The booklet’s second half addresses parental input, urging moms and dads to eat and play with their children, and to spend individual time with each kid, which may help reduce emotionally motivated eating. Rowland finds that the lessons she learned during the program have given her children more hands-on decision-making skills, such as the ability to interpret nutrition labels and to leave fattier items right there on the supermarket shelves. “Our family used go through boxes of Little Debbie Snack Cakes,” Rowland recalls, “but after the trans fat discussion [at the Y], we went home and threw them all away. Now, when I tell them to go pick out something for a snack, nine times out of 10 they pick out 24
something very healthy.” As the family’s head chef, she changed up the menu, using recipes that trim the fat, switching to brown rice and whole grain spaghetti, substituting olive oil for butter, and baking instead of frying. For exercise, the family bikes together. Sometimes the children zoom ahead on their heelys—shoes with little wheels on the bottom. Kylah, inspired by the historic Olympic performance of Michael Phelps, now swims three days a week; Kennedy and Kamryn often exercise before bed; and Raymond recently played his first season of flag football.
MODEL BEHAVIOR Lauren R. Cislak, manager of communications for Eli Lilly, the pharmaceutical company, worked with the Y as well as with families to establish the program. Her development team delved into the lives of people such as the Rowlands and asked, “What are your special needs?” They also made gentle suggestions such as, “Take a nice walk around the block after dinner, crank up the music and dance together.” The thinking, Cislak says, was for “families to set goals that are reasonable, win small victories, and move on to new achievements.” The fact that kids don’t get fat by themselves is a key concept behind the Healthy Families program. “There is
a context for behavior,” says Alles. “It’s reinforced through modeling of parents, their values and their sustained behavior.” Maybe the family watches TV and eats ice cream together. Or perhaps a parent is on the computer, while a child plays a video game, each munching a high-fat snack. “Our children are doing the same things we are, which translates to normal,” he adds. If we over eat, they over eat. If we don’t exercise, they may not either. Alles suggests that parents model healthy eating habits and fitness routines in the same way that they teach children to look both ways before crossing a street, or warn them about unprotected sex. All represent life-sustaining choices. Trina Wiggins, MD, a Las Vegas pediatrician, also finds it pointless to expect a child to be successful at losing weight if there’s no family support. “The mother or guardian purchases the food, so if they’re not eating well or not working out, it’s a moot point to talk to the kid.” Societal change over the past generation or so has helped to expand our waistlines, says Kristine Courtney, MD, director of Corporate Health Services at Eli Lilly. “We used to walk to school, now we take buses. Kids used to play outdoors, now free time is filled with video games.” Wiggins agrees: “When I grew up,” she says, “it was torture for me to be inside. I loved kickball, dodgeball and riding my bike.” Many wag the finger at technology for giving us entertainment that we can’t put down, and for allowing us to take lazy short cuts.
“We’ve engineered physical activity out of our lives,” Alles observes. “It’s not only our passive use of escalators and elevators at the mall or in parking structures. We have created communities better suited for car transportation than for recreation.” Expansion of roads and freeways often make walking to parks or finding dedicated bicycle lanes difficult or impossible. At many schools, the daily physical education classes of Wiggins’ day have been scaled back to every other day or even offered only as electives. Instead of a hot lunch from the cafeteria, the school may serve pizza, burgers and tacos from local fast food restaurants. The young Rowland girls have learned to say “no thanks” to the fast stuff. Dissatisfied with the lunch choices at their schools, they bring their own. Kennedy and Kamryn also belong to an after school program called Girl Power, which stresses the importance of a healthy diet and exercise.
THE BIGGEST LOSERS Alles finds that as children gain weight, it’s harder for them to be physically active because it takes more effort and doesn’t feel as comfortable. He invites parents to examine the “connectedness” of technology use, weight gain and increased inactivity. Wiggins sees that connection every day. “A 10-yearold who weighs 150 pounds is normal in a family where mom and dad are overweight.” She’s challenged with finding a way to deliver unpleasant news to these parents in a way that doesn’t come off as, “Your kid is fat, and it’s all your fault.” One technique is to show parents a growth grid on ABILITY 25
which obesity is defined by body mass index (BMI), a complex calculation that takes into consideration a child’s age and sex. “It’s objective,” says Wiggins, who finds it difficult to cram meaningful discussion about childhood obesity into a 15- or 20-minute appointment. “I have found myself trying to talk a mile a minute to get it all in, but they’d come back a month later, and Johnny had gained five pounds.”
must invest in one another to ensure that we all get a chance to live long, healthy lives.
The idea that parents may prematurely bury their obese children hit home recently when Wiggins’s cousin succumbed to diabetes. Overweight and on dialysis, he died of kidney disease at 33 years old, survived by his 66year-old mother. This experience and others, both as a pediatrician and body builder, motivated Wiggins to start OPT2BFIT, which offers fitness camps for kids (see sidebar).
“It’s never too late,” he asserts, “to make changes that will positively influence the quality of our lives and health potential.”
A FAMILY AFFAIR “When you work on something like your weight, you can be real excited when you get started, but then run out of steam,” says Courtney. “Family provides support to get you to the end of the race.” At Eli Lilly, she helps get employees out of their chairs and into exercises sessions. She sees her colleagues as part of a greater community of adults and children who 26
“We have to reverse this [childhood obesity] trend in a positive direction,” Alles concurs. “There is a large gap between what people know and what they do. We have to make it so that health, nutrition and fitness are reflected in the lifestyle of the family.”
Rowland came away from the Healthy Family sessions not only with better nutritional information, but also a stronger bond with her children. “We spend more time together as a family, giving each individual member a voice, no matter how big or small or young…” Last summer, the family experienced a devastating fire that disrupted its routines, but a month later they picked up where they left off and got back to eating well and exercising regularly. “All of a sudden,” Rowland says, “my children discovered that it’s cool to be healthy.” PKJ ymca.net/healthyfamilyhome/welcome.html lilly.com
Pediatrician Trina Wiggins, MD, on floor (center) and in high flying acrobactics, encourages kids to make exercise fun. She gets a kick out of entering fitness competitions around the United States.
t’s 1982, and Trina Wiggins, a gymnast and pre-med student at Stanford University, weighs 124 pounds.
Cut to 2007: Wiggins, now a pediatrician, returns to her 25th college reunion, weighing 125 pounds. Getting through medical school, facing the challenges of being a wife and mother, and keeping a dozen plates spinning in the air could have easily added several layers to Wiggins’ waistline. Yet she’s always maintained a focused exercise and diet regimen. In recent years, the Las Vegasbased physician—married for more than 20 years to Carl Allen, MD, and mother of Malcolm and Marcus, 14-year-
old twins—has participated in fitness competitions. Now she’s trying to pass down her good habits to the next generation. “In a practice setting,” she says, “a physician [doesn’t] have much time to talk nutrition and exercise.” While she gives parents as much information as she can, she still finds that she prescribes too much medication for early onset diabetes and high blood pressure. These diseases point directly to inactivity and poor diet, and in her efforts to prevent them, Wiggins created Fit Kidz Consulting and OPT2BFIT, through which she ABILITY 27
hosts weeklong fitness camps that cost around $200. At camp, children engage in cardio exercises to their favorite CDs, and play games such as Portion Control Bingo, which helps them learn about nutrition and making smart choices about what they eat. At a recent elementary school assembly, Wiggins spoke to 800 students about the value of staying in shape. “We showed them a cartoon of two women who go from age 13 to 60,” she says. “One rides a bike, the other a couch. One has a good diet, the other bad. At 60, the one who was riding the bike at 13, is still riding with friends, while the other is in a wheelchair with a stack of 10 medications.” Wiggins lets kids try a lot of different foods at the camp, substituting a high fat mac and cheese, for instance, with a better choice from markets such as Trader Joes or Whole Foods. She sends home notes to parents about the healthier items their kids like, so moms and dads don’t spend money on products a child won’t eat. But turning other people on to her favorites has a downside. One day she went to the store to buy turkey bacon, but after her cheerleading session with the kids about how much she loved it, and how much better she thought it was for them than its pork cousin, the store ran out. She went home that day without any turkey bacon, but pleased that the children had heeded her advice. Wiggins not only makes exercise fun for kids, she also has a ball doing her fitness competitions. One year she performed dressed like Tina Turner; the year before she took on a spy persona. During Ms. Fitness USA, Fitness America and other competitions, she and fellow competitors are judged in categories that may include a dance routine to show off flexibility, evening gown/swimsuit to highlight their physiques, and speaking ability to demonstrate their passion for fitness. The pediatrician has been entering contests since 2004, when she and her sister, Tamara Wiggins-Steele, saw their first fitness competition at a local hotel. “My sister challenged me to enter one,” Wiggins says. “I was inspired because she’d recently run a marathon.” Wiggins’s diet supports her fitness goals: Her family eats grains, fruits, veggies, some chicken and plenty of fish. In addition to her medical practice and fitness competitions, Wiggins is now actively applying for grants to help extend her fitness camps from summer to year round and market a portion-control plate, which keeps one mindful of serving sizes. Although, it doesn’t take a doctor to tell you that you’ll probably live longer if you eat like Ms. Fitness than Miss Piggy.
by Pamela K. Johnson
he YMCA has come up with a list they call The Daily Dozen—the 12 things that can have a huge impact on a family’s health, once they’ve woven it into everyday life and routines. Getting physical helps maintain healthy weight, lowers the risk of serious health problems and helps us sleep, focus and maintain an upbeat attitude. The Y suggests that you experiment with different activities until you find some things that are fun to do, so that you’ll do them everyday.
1. Get a total of at least 60 minutes per day of fun, physical activity. Moderate activity uses large muscle groups and increases your breathing or heart rate. Ideally, you should be able to carry on a conversation throughout the exercise. If 60 minutes sounds like a lot for a busy family, don’t worry. You can spread this out in chunks of 10 to 15 minutes over the course of a day. Include outdoor activity whenever possible—it’s more refreshing and, weather permitting, sunlight can improve your mood and help your body produce Vitamin D. Remember to wear sun block. 2. Get more vigorous physical activity too, for 20 minutes, at least three times per week. This type of exercise is usually rhythmic and repetitive in nature (think biking, jogging, swimming). It uses large muscle groups and may cause sweating and hard breathing. It should increase your heart rate. Your doctor or health-and-wellbeing professional can help you figure out what heart rate is healthy and appropriate for you. Again, get outside whenever possible. 3. Bring adults and kids together in physical activities to provide opportunities for modeling positive behavior. Your kids will be more active if you are, and you can learn how to play again from your kids. Grown-ups can lead by example, showing that physical activity is a healthy, fun, necessary part of life. You can also model teamwork, sportsmanship, problem solving and flexible thinking through physical games that you plan and play together every day. 4. Limit “screen time” to less than two hours total per day. This includes television, computer time and video games. Simply put, there are only so many hours in a day. The more hours we spend in front of a screen, the fewer hours we have to take care of ourselves and each
other. Decreasing screen time frees up hours for more physical activity and promotes healthier, more interactive ways for a family to entertain itself. Pediatricians recommend two hours’ maximum daily screen time for kids—and none at all for those under age two. Studies have shown that kids who rack up more screen time are more likely to be overweight, participate less in physical activity, consume more sugar-sweetened beverages and eat more. If you or your kids already top the two-hour limit, expect some resistance to change. It can be a hard habit to break. Empathize, but talk openly about why limits are important. Stay firm on the key message: in order to keep our bodies and minds healthy, we need to move more and sit less.
deprivation. Moderation means eating reasonable portions whose total calorie counts don’t exceed our true caloric needs. But frankly, calorie counting often is less helpful than learning what looks and feels right. If your habit is to serve large portions, try to scale them down.
5. Serve fruits and vegetables at every snack and meal. Offer fresh fruit and veggie options every day. Five or more servings per day are important for growth and development and optimal immune function. Research shows that this intake also lowers one’s risk of heart disease, stroke, high blood pressure, diabetes and certain cancers. An easy way to explain the need for variety to kids and adults is that our bodies require a rainbow of foods to be healthy: naturally red, orange, yellow, green and blue foods. A fresh, colorful diet is virtually guaranteed to be a healthy one—an idea that’s easy to wrap our minds around.
10. Provide each child with one-on-one attention every day. Carving out these times can require planning and negotiation, especially for larger families, or those in which both parents work long hours outside the home. While it’s best if this happens regularly, sometimes you can take advantage of spontaneous opportunities to spend some time with just one child. Your interests, your child’s interests, and the nature of your relationship should help shape what you do together, as well as how, where and when. Try to be flexible and creative. And, while you’re scrambling to meet everyone else’s needs, remember to take time for yourself. You can’t bring energy to your family without recharging your own batteries.
6. Make water your primary drink every day. Water is the best choice for quenching thirst. All family members need plenty of water, especially during the warmest and coldest months of the year, when the sun and indoor heating systems can dry us out. Our bodies are made mostly of water and use it to perform every function, so we have to replace it consistently. Staying hydrated is particularly important during physical activity, so take water along whenever you’re on the move. 7. Include a whole-grain or protein option with every snack. To many people, “snack” is shorthand for “simple carbohydrates,” such as potato chips. There are better options. Whole grains provide more fiber, Vitamin E and essential fatty acids. They can protect against heart disease and cancer. Higher-fiber foods can also help you feel fuller sooner, and reduce your overall food intake. Examples include almonds and tortilla or pita chips made with whole grains. Also, protein provides lasting energy. 8. Offer healthy, unsaturated-fat foods for meals and at snack time. Food labels list different kinds of fats. Both saturated and trans-fatty acids are associated with increased low-density or “lousy” cholesterol levels in the body. In contrast, foods with mono-, poly- or unsaturated fatty acids (such as nuts, fish and olives) may actually help reduce lousy cholesterol. 9. Emphasize moderation, balance and variety. Food trends come and go, but wisdom is timeless: We all do better with balanced nutrition based on moderation, not 30
Slow down when you’re eating, savor every mouthful, and stop when you’re full—even if something tastes great. Encourage your kids to do the same. Studies show that balanced meals can help prevent cravings, increase metabolism, increase “satiety” (feeling full), assist in weight management and ensure adequate nutrition. Choose a variety of healthy foods for your family to promote consistent energy and a healthy life.
11. Sit down as a family for one meal a day. The research on this is astonishing. Studies have shown that kids who regularly eat with their parents are less likely to be overweight, smoke, abuse drugs and alcohol or experience depression. They get better grades, have stronger self-esteem and enjoy better peer relationships during adolescence. On a nutritional level, research has shown that family meals are more nutritious than “solo” meals, and that kids who eat with their family end up making healthier snack choices—eating more fruits, vegetables and whole grains. When grown-ups eat with their kids, they can set a good example by making healthy eating a lifestyle, not a temporary fix. Some experts say such role modeling may even help ward off eating disorders—a growing problem seen in increasingly younger kids. 12. Involve kids in snack and meal preparation and cleanup every day. Young kids can watch, learn and contribute as you explain what you’re doing—dicing, mixing, heating, for example. Engaging kids in safe, simple tasks will give them a sense of pride and ownership in the meal. Older kids can provide other assistance or sit nearby as they do their homework. Most kids can pour beverages, set the table or toss the salad. By teaching them these skills, you’ll be investing in a more enjoyable meal, because everyone helped. And later, their roommates and spouses will thank you!
ecently, Senator Ted Kennedy was diagnosed with a brain tumor. While he is 76, a person can get a brain tumor at an age. Let’s explore what a tumor is. First the basics: A tumor can arise in virtually any part of the body, and is a collection of cells that have disturbed growth control mechanisms. By contrast, normal cells have mechanisms that prevent them from growing out of control. Tumors form a mass or a lesion—terms often used to describe abnormalities on an x-ray or scan before doctors know for sure what it is they are seeing. However, a mass or lesion doesn’t necessarily mean you’ve got a tumor. They can be benign or malignant or somewhere in between. The benign variety grow more slowly, and often can be treated by surgical removal. Some benign tumors can even be left alone, requiring no treatment at all. Malignant tumors, on the other hand, are better known as cancer. These cells grow rapidly and can spread into adjacent normal tissue, and to other parts of the body, which is known as metastasizing. Let’s look specifically at malignant brain tumors. Cancer in the brain, as in most organs, is further categorized by whether it arises from brain cells or spreads from elsewhere in the body. The latter is referred to as a cerebral metastasis. Most cerebral metastases arise from lung or
breast cancer, the two most common types of cancer in the United States. Tumors that originate from other places in the body are sometimes called secondary tumors. Primary tumors refer to those that have arisen in the organ where they are located. Only malignant tumors metastasize to other organs. There are two interesting things to note about malignant primary brain tumors: One is that the cells that form the cancer are not the brain cells or neurons. Instead, most malignant brain tumors arise from the connective tissue cells of the brain, known as glial cells. Thus, these cancers are typically referred to as gliomas, and since most are malignant, the term malignant gliomas is commonly used. The other interesting thing about a malignant glioma or brain cancer, is that it almost never metastasizes outside the brain. Nonetheless, the condition is difficult to treat and virtually impossible to cure completely. Tumors are graded from I through IV, the latter being the most malignant, and often referred to as glioblastoma multiforme. Although they too are difficult to treat and never completely cured, encouraging results have been achieved in a study with a new drug called Avastin, which shrinks cancer tumors by cutting off their blood supply. by E. Thomas Chappell, MD
y life is totally different,” said Logan Olson. Let us compare and contrast, shall we?
Today, at 23, she’s a magazine publisher and a young woman on a mission to sprinkle inspiration into the lives of others. But just seven years ago, she was at death’s door, knocking vigorously. It all started when Olson was born with a faulty ticker. Then, at 16, she had surgery to replace one of her heart valves, which doctors took from a pig. (“Oink, oink,” Logan jokes.) But six months later, the laughter faded when, on Halloween night 2001, she collapsed from a heart attack. If that wasn’t scary enough, she quickly lasped into a coma. ABILITY 35
Logan (fourth from left) at a Youth Leadership Forum In Olymipia, WA.
“That first night, I was hyperventilating in the Intensive Care Unit,” says her mom, Laurie. “I was terrified that I was watching my daughter die before my eyes.” The staff at Sacred Heart Medical Center in Spokane, WA, cautioned Logan’s family that coming out of a coma is quite different from the soap opera version, where a character flutters her eyes, mumbles a few words, and then miraculously snaps out of it. The staff was right: When Logan started to wake after three weeks in the twilight zone, her mom noticed a remarkable difference from the teenage daughter of just a few weeks earlier: “She had sustained quite the brain injury,” Laurie recalls, “she was like an infant.” Although given CPR following the heart attack, Logan still went without oxygen for several critical moments. She remembers none of this. As for those missing three weeks, she says, “I wasn’t there.” Lasting symptoms of the damage to her brain include short-term memory loss, difficulty with finemotor skills and lack of balance. It all seemed so sudden: One day, she was driving to the mall, shopping for chic bargains, and keeping up her reputation as a trend-setting fashionista. The next she was in a hospital bed, unable to move a single muscle. During one early rehabilitation session, her therapists gathered around her yelling: “Hold your head up!” That act, alone, would have been considered great progress. Logan’s mom won’t soon forget watching that harrowing scene: “I was thinking Oh my God, is she ever going to sit up again? Then I saw that she was fighting to pick her head up, fighting to stay alive, and I knew that if she was fighting that I would fight with her.” Months earlier, Laurie had left her bookkeeping job with her husband’s business. With extra time on her hands, she was able to keep more of an eye on Logan’s younger brothers, TJ and David, while devoting greater focus to her daughter’s healing. Logan stayed in the hospital for four months, and then entered rehabilitation for another four. 36
Logan hits the road to promote her magazine.
By then she had progressed to the point where she could move about with a walker, and could finally hang out at the mall again, checking out the cool clothes. But there’s only so much shopping that one can do, and she soon found herself sitting at home again, bored. Desperate to get her groove back, she surfed the Internet and scoured local bookstores to find a magazine for girls like her, who had been zooming along when their lives jumped a track, and now they were inching along, navigating with a new disability. When she came up empty handed, Logan began collaging and pasting together pages that would become the template for her magazine. “I’m still alive,” she told herself as she worked, but that wasn’t good enough. “How are you going to live?” she wondered. The answer, she discovered, was to be found in the pages of her new creation, Logan magazine—a combination of rehab, inspiration and, of course, head-turning fashion. After two years, Logan was finally able to return to school. In her special education classes she showed her new project to classmates who were also dealing with disabilities. “I took in a prototype just for fun,” she says, “so they could see what I was working on.” “They freaked out about Logan’s idea,” Laurie recalls, “and her special ed teacher was a little fashionista, too.” Logan, however, wanted more input, so she pursued feedback from 10 other focus groups, all of whom gave her a thumbs up, convincing her that she had a product that would interest a wide range of people. Her first case manager in the school system’s Department of Vocational Rehabilitation (DVR), however, had doubts, saying that Logan couldn’t possibly publish a magazine by herself. “Nobody can,” Logan told her, aware that it would take a team. Although initiatially a bit defenseive, she can now admit that her case manager did have a point: “I wasn’t ready. I had a dream, but I needed a detailed plan.” Still, she wanted a case manager who was more supportive of her fledging dream, so she requested
another one, and was placed with a gentleman named Gene, who not only told her how to get a self-employment plan approved, but also set her up with a business plan coach.
orful website, gave the 16-page magazine mock-up a more professional look, and continues to shoot the cover every month, which features Logan looking, as you might expect, fashionable.
It took eight months for Laurie and Logan to complete their business plan, with her new case manager not only providing encouragement, but also offering funding to help launch the publication.
The young publisher offers her readers reassurance that they are not alone, a feeling she longed for when she first came home from the hospital. “I wanted to hear some honest stuff about people’s journeys,” she says. “How they were doing; what they were doing.”
The prospect of starting a new publication and keeping it going, however, proved a source of great trepidation for the two Olson women. They experienced… Fear of failure. Fear of rejection. Fear of the unknown. “We had to do something besides be afraid,” Laurie says, “So we picked up the phone and made cold calls to people I thought might be able to help. Now Logan has a whole team around her.” One supporter turned out to be the principal of a Spokane, WA-based design firm. “This is my idea,” Logan told the designer when they met for the first time. “I was looking for this magazine, and it wasn’t there, so I want to create it. Would you help us?’’ Logan recalls the woman saying, “Oh my gosh. I’m in! I’m in.” So a high-octane, graphic design firm built Logan’s col-
The publication’s writers have their own stories to tell. They include Adam Membrey, who is deaf, and Joy Carlsen, who, because of cerebellum challenges, sometimes types with a split keyboard while lying down. The team profiles such subjects as Paralympian Mark Zupan, who acquired a spinal cord injury; Microsoft executive Jenny Lay-Flurrie, who is deaf; and champion surfer Bethany Hamilton, who lost an arm in a shark attack. Regular features include the One of the Guys’ column, about a young man with a disability; Cheap Chic fashions; MustHave Products, which recently included a Talking FirstAid Kit, and Speed Laces, which allow a pair of shoes to be slipped on and off without bending or tying. Logan’s family pitches in to help her. In addition to her mother, who is co-founder and editorial director, her dad is her bodyguard and chauffeur. “He also makes phone calls,” she says, while Logan’s grandmother researches recipes for each issue. One of the most satisfying aspects of editing a magazine is receiving letters, Logan finds. ABILITY 37
Although girls and young women from 14-35 are her target demographic, she receives correspondence from women up to 80 years old. “I get a lot of response from high school girls and women who want to learn how to live well,” she said. They tell her that Logan— the magazine—keeps them going during times when they’re prone to the blues. A girl with cerebral palsy wrote, ‘I feel like I’m the only one dealing with this issue.’ Logan replied: “Oh no, there are a lot of girls like you out there.” A 16 year old who had been paralyzed at 12 in a car accident, said that she found inspiration in Logan. Another letter came from a woman, 30, who had a stroke in the middle of her career, lost her boyfriend, and then her way. She went online, discovered the magazine and felt heartened by the sense of community. This is the way life is going to be now, Logan says through her magazine and by her own life example. But we’re still going to live and we’re not going be afraid. She aims to inspire readers to go after their goals. Logan understands that readers’ parents sometimes need a pep talk, as well. They worry as their child with a disability transitions out of high school and wonder, Now what? But when they see someone like Logan achieve her dreams, they envision another, more fulfilling way that life can unfold for their own children, she says. As Logan and Laurie move forward, they find themselves encountering new fears: Fear of success. Fear of traveling. Fear of public speaking. Distribution of their magazine is expanding rapidly, which is both good and stressful. Logan is now in doctors’ waiting rooms, in the special ed department at schools and in bookstores. Though they had been thinking small and manageable—a publication that would be distributed locally—they get calls from around the country and around the world to send magazines. To assist with the management issues of a growing company, they formed a board of directors, which includes Gene, Logan’s former case manager from the DVR, who recently retired. The magazine costs about $25,000 an issue to produce. Team Olson seeks out subscriptions, hustles for advertising, and is pursuing nonprofit status to tap into grant monies. “We’re leaning on sponsors and advertisers,” says Laurie. “This is the difficult part of the journey.” But they are fortunate that Nordsrom and Microsoft came aboard as committed advertisers. 38
One of Logan���s first trips when she was still undergoing rehabilitation was to a weeklong Microsoft DigiGirlz High Tech Camp at the corporation’s headquarters in Redmond, WA, roughly 300 miles west of Spokane. Leaving home for the first time gave her a bad case of the jitters. Fortunately, the first speaker, Lay-Flurrie, who as has been mentioned is deaf, and who manages 500 people at Microsoft, helped ease her fears. “Don’t let anything stop you,” she told Logan and the other assembled campers. “Get on with it.” The young publisher used that week to network, try out the company’s speech-recognition programs, and connect with people in Microsoft’s diversity department. They loved her magazine idea so much that they decided to run an ad on the inside cover of each issue. Later, she met the diversity team at high-end retailer, Nordstrom, with whom one of her nurses played softball. After about a year, Nordstrom also signed on to run an ad, this one on the inside back cover. Nordstrom’s stylish black and white page is designed specifically for Logan magazine, and congratulates its creator on her successes. These early triumphs gave Logan confidence when she again had to battle butterflies while getting on a plane to Denver, CO, for yet another Microsoft event. The company shot a video of Logan working with their speechrecognition equipment, and wanted her to attend a convention of their partners to show how their assistive technology is helping people improve their quality of life. Logan had to face an audience of 10,000. They didn’t ask her to talk that day, but more and more she is called upon to address groups who want to hear her story. With her memory, speech and balance difficulties, public speaking is a true challenge. “She uses a speech that she follows, but it’s not easy,” Laurie says. “If I have a tough time speaking clearly, my mom interprets,” Logan added. “We tag team. It works out great. My message gets out there just fine.” She may have needed three people to help lift her head when she came out of that coma several years ago, but today there’s no holding her back. “I want to do a magazine camp, go to fashion week in New York, design tools of my own, design a cool walker backpack, design a cool wheelchair bag, add more pages to the magazine…” she says, all without taking a breath. Compare and contrast, indeed. by Pamela K. Johnson loganmagazine.com
any of us recognize Scott Hamilton as the Olympic figure skater who took home the gold medal at Sarajevo in 1984. But fewer know that when he was about two, he contracted a serious illness that made him stop growing for several years. Later, that condition was corrected, but he went on to face testicular cancer. More recently, he managed to contend successfully with a brain tumor, and his courage has inspired his fans all the more. Our own medical managing editor, Thomas Chappell, MD, asked the champion to talk about his diagnosis and treatment for a brain tumor. Hereâ€™s Scottâ€™s story: ABILITY 41
(Next page) Scott and Tracie snuggled with Aidan (left) and Maxx on Massachusetts’ Nantucket Island last summer. Scott’s health challenges make life that muchmore precious to the family.
Ice, ice baby... Scott Hamilton has been a cool competitor for nearly all his life. (Right) Try this, Tiger Woods!
It had been seven and a half years since I completed treatment for testicular cancer, and I had stepped away from skating and made some life changes, including getting married, starting a family and moving into a new house. Though I had an infant son at home, I was feeling passionless, without energy. I just didn’t feel like myself. With all of these new life stressors, I couldn’t put my finger on what was troubling me, whether it was physical, emotional, mental or all of the above. I decided that I wanted to rule out the physical, so I called my doctor in Cleveland. He said, “Go get some blood tests done.” A few days later I get a call. They found only minuscule amounts of testosterone (male hormone) in my blood. Because of that, they felt that with my history of testicular cancer, my remaining “soldier” (testicle) had probably kicked the bucket due to my chemo treatment. My doctor recommended a topical gel (rubbed on the skin) to replace the testosterone, but something about that didn’t really make sense to me. There was still something that wasn’t quite right. So I set up an appointment with my urologist, who had done the surgery for my previous testicular cancer. I said, “Look, I want to sit down and talk to you, and just rule out everything.” I’d always been very vigilant about caring for my health, and have preached that in 42
every speech I’ve given over the last seven and a half years. I told my urologist that my vision had changed. He goes, “How old are you?” “Forty-something.” “Well, that’s it. You’re getting older, and you’re eyes are going to change. I said, “Well, then, why is it purely peripheral?” He said, “What?” “If I hold my hand over my eyes this way,” I told him, “everything’s blurry on the outside, and everything’s focused on the inside.” He goes, “Okay, that’s something different. Let’s get you in for a head scan.” So I went in for an MRI, and my doctor was waiting for me after the test. He said, “You have a brain tumor.” I just couldn’t believe it. I thought that because I had had testicular cancer, major surgery, and three months of
chemotherapy, that I’d paid my dues. (laughs) I thought that I was going to be bulletproof for a bit. I had this young family, including a son who was just a year and two months old, and I’m thinking, “How am I going to do this?” I knew that how I handled it would be an example for my family. Anyway, we all knew that I had had hormone problems, and the scan showed a tumor right behind my nose at the base of my brain. It was clinging to the optic nerve and causing the vision problems. And it was around the pituitary gland (the “master” gland in our bodies). In order to give me the right treatment, they had to find out exactly what kind of tumor it was, which required getting a piece of the tumor to study under a microscope. What I didn’t realize at first was the considerable risk of this brain biopsy. And of course they have to tell you the worst-case scenarios. All the while, I’m trying to look for the goofy, bright side of this thing. “We seem to have found a safe corridor?” OK, I know I don’t use most of my brain, but “safe corridor,” what does that mean? They told me that “it means we could touch something, hit something. There could complications, like loss of
strength on one side of your body, speech disturbances, changes in the way you think and feel, damage to your vision and so on.” Later that day, my family arrived at a hotel near where I was doing a benefit. I went up to the room and Aidan, my son, was playing on the floor, and my wife, Tracie, says, “Okay, what’s going on?” I said, “Well, I just came from Dr. Klein’s office and I have a brain tumor.” It was the hardest thing I’ve ever had to say to anybody in my life. She just paused for a second, grabbed both my hands, put her head down and started praying. That was an extraordinarily powerful moment. It gave me incredible strength, focus and resolve. I knew that ultimately we were going to be just fine. The only thing I could do was go ahead and get the biopsy. Neither Tracie nor I slept much the night before, because I was so scared about the procedure. I thought, maybe this would be the last time that I would be able to communicate with her. Or if things went wrong, I might lose some strength and become a burden to her. So we prayed through the night. I went in for the biopsy at 6:30 a.m. I remember waking up in the Recovery Room. I looked up at the clock and it said 10:20. I knew what time it was. I knew where I ABILITY 43
Hamilton: coaches the next generation, and serves as an ambassador for ice skating, spreading enthusiasm for his razor-sharp sport.
was. I knew who I was. And I knew why I was there, which made me feel so relieved. It was one of the most powerful moments of my life, knowing that what could go wrong, didn’t go wrong. The diagnosis came back: craniopharyngioma, which is better known as a pituitary tumor. So, I said, “Okay, how do we treat this thing?” The tumor’s nature and location made it inoperable. They couldn’t just go in and pluck it out, because it was clinging to the optic nerve, right up against where it goes into the brain, and it was also clinging to the pituitary shaft. It just so happened that they were having a symposium on brain tumors at the Cleveland clinic at that particular time. Dr. Barnette, my neurosurgeon, was surrounded by his peers, whom he really respected. He anonymously floated my case across a broad range of neurosurgeons just to see how they would handle it. He said it became a animated discussion with no clear consensus. Dr. Barnette finally suggested that I consult with Dr. Ed Laws, one of the world’s foremost experts on tumors of the pituitary gland. He said, “I’ve looked over your history and your scans, and I can tell you that if you were my son or my brother, I would tell you that the way to treat this is with Gamma Knife radiation.” That’s a nice 44
way of giving somebody advice; it means that they feel strongly about it, they believe in it. Getting that information, I came back to the dinner we were having and I just wanted to hug and kiss my wife and tell her, “We’re gonna be just fine. I’ve got the best minds in the world on this, we’re moving forward.” I had to take this powerful anti-inflammatory steroid called Decadron. One of the side-effects is that I could not stop eating. I’m so grateful that my wife is really skilled and knowledgeable about food supplements and homeopathy. She gives me just the right nutrients, so I wasn’t eating junk and gaining 500 pounds throughout this process. I still put on a great deal of weight, which really bothered me, because I wasn’t used to that. I was used to being lean and mean. A lot of it, too, was just getting sources of inspiration wherever I could. One was the Red Sox coming back to pummel the Yankees and win the World Series. I figured if they could come back from the hole they were in, after the devastation of game six, I would be just fine. I thought, “As low as I am right now, I’m going to come out of this a much better person.” And it’s become kind of my mantra. “I’m going to evolve.” And that was a huge source of inspiration.
50 Candles: Weeds’ Kevin Nealon and Monty Python’s Eric Idle—the latter with his body in the clouds—were among 150 of Hamilton’s close, personal friends who surprised him on his birthday last summer.
I’m trying to make getting ready for the Gamma Knife treatment as humorous as possible. First, they screwed a metal frame to my head. (laughs) They screwed it into my skull. As a surgeon, you know all about this, I’m just trying to figure out a way to describe it to your readers. And so they had to give me numbing medication with a needle in my scalp, and that hurt too, but after that all I felt was pressure. Next, I had to go in for an MRI scan with the metal frame on my head. The frame serves as a point of reference. Your head then locks into the Gamma Knife machine with this helmet over your head that helps “channel” the radiation precisely to the target, i.e., the tumor. The computer knows the exact shape, size and location of the tumor, so it can best strategize the radiation. There are 201 points of radiation coming in to one spot. So it’s low dose everywhere else, culminating in that one spot (the tumor), which just gets absolutely nuked. It’s all wonderfully figured out, all calculated perfectly. So they sit at the computer and strategize to make sure they are delivering the treatment the best way. The whole time they’re doing that, I’m allowed to eat and do a lot of things. But I’m wearing this frame on my head, and I can’t easily get food around the frame. It was like problem-solving. OK, I’m trying to eat some fruit. How
do I get it over this or under that? There’s this big bar going right across where my mouth is, and to get the food in there without messing everything up. We had a good laugh about it all. It was clumsy and silly. After several hours of waiting, they said, “We’re gonna do this 26 times. Each time we’re gonna slide you in, lock it down, zap you, pull you out, adjust, put you back in, lock you in, zap! Pull you out, adjust, put you back in, lock you in, zap! A total of 26 times. So I said, “How long is this going to take?” “Less than half an hour.” Inside the machine, it’s kind of a ker-chunk, pushing all the points on your skull where the frame is screwed in. But it wasn’t so bad. But after the 16th time, I was swinging at phantom people. I just wanted to punch somebody; I was so frustrated. It’s just like somebody tapping with the end of their finger in the middle of your forehead incessantly, and after a while it starts to be uncomfortable. But by 16th time, I also started to think, Okay, I’m more than halfway there. Let’s get through it. And soon they said, “OK, you’re done, let’s get this frame off!” Once they released the screws, the pressure was released, but then there was a new type of discomfort. It ABILITY 45
Body by ice skating.
almost felt like as they released the pressure, they were actually applying more pressure. I’m like, “Guys, guys, guys! Lefty loosy, rightie tightie, okay? Are you gettin’ me on this?” The amazing thing is, I was all done. Done! I was treated for this thing and now I was done!” They had treated me the best they could, and now I had to go on to what my new life was going to be. I knew it was going to be different, because when you go through something like that, your pituitary gland is pretty much gone. Sayonara! There’s nothing much left of it, because it took the hit along with the tumor. So you kind of realize, “OK, now I’ve become this new person who has new hormonal issues to deal with everyday.” For example, testosterone. What about fertility? We wanted 46
another child. I had testicular concerns and now I had a pituitary brain tumor. Was I going to be able to produce another child? So that was in my mind, as well as the treatments: Instead of it being the testosterone gel for fertility issues, now it was going to be this new injection that stimulates testosterone production in my body. I also have to take all of the hormones that my pituitary gland can no longer produce because of the radiation. There is one to stimulate my thyroid gland, and a very important one to stimulate my adrenal glands. One of the most amazing things is that I got my vision back. And earlier this year, we welcomed my second son, Maxx Hamilton, into the world.
Good health is enhanced by having good people around you!
Brain Biopsy The best way to tell whether a tumor is benign or malignant requires getting a piece of the tumor, slicing it thinly, treating it with special stains, and looking at it under a microscope. This can often be done by placing a needle through the skin and into the tumor. Discomfort is usually minimal and the greatest risk is usually the possibility of causing bleeding in the area. Since insertion of a needle is a “blind” procedure, some sort of medical imaging like a CAT scan, MRI, fluoroscopic X-ray or ultrasound is needed.
Using precise computer techniques, the tumor receives “killer” doses of irradiation, while immediately surrounding normal tissues receive relatively little radiation—a distinct advantage. Given the many particularly sensitive areas of the brain, precise guidance of the needle is vital. This is accomplished with a technique called “stereotaxy.” This works much like the global positioning system in your car. The concept is that if you can define at least 3 points in space, you can relate all other points in the world to those 3 points, defining every point in the world. In the case of GPS, satellites orbiting the earth serve as points to which all other points can be referenced. Digital maps in a small computer in your car allow your position to be continually referenced to every other point on earth so precisely that it can be depicted on the map. Pituitary Tumors The pituitary gland is actually part of the brain. It sits at the center of the base of the brain, directly behind the top of the nose. The pituitary gland is often called the master gland because it “supervises” the activity of body’s other glands. Tumors can occur in and around the gland. Most are benign. Some arise from the actual cells of the pituitary gland, while others arise from tis-
sues in the area, or in the case of craniopharyngeomas, from remnants of tissues trapped there during embryonic development. Due to their proximity to the optic nerves, these tumors most commonly cause loss of peripheral vision. The interesting thing about Scott Hamilton’s case is his history of growth arrest as a child. Craniopharyngeomas can cause this, but could not be easily diagnosed when he was young. More perplexing is that several brain scans taken during his bout with testicular cancer did not show the lesion. The question remains whether the craniopharyngeoma was present at birth and whether it had anything to do with his testicular carcinoma. Gamma Knife Radiation Treatment For those Trekkies out there who feel they simply must be treated with a laser, this is as close as you will get. Lasers actually have limited use in medical treatment, but most of us facing health issues today are enamored with being cured by a zap from a laser, which probably means we’ve been watching way too much television!! Gamma Knife radiation is not so different from the radiation treatment that has been used for years to treat various tumors. The key difference is that stereotactic techniques are applied so that dangerously intense doses of radiation can be applied with little risk to normal tissues. Using precise computer techniques, the tumor receives “killer” doses of irradiation, while immediately surrounding normal tissues receive relatively little radiation—a distinct advantage in the brain where tumors often approximate delicate normal structures. The technique is referred to as “radiosurgery” due to the scalpellike precision. Like any surgery though, it does have its T.C. risks.
ach day a report comes to Stan Dutko Jr.’s office, and each day he gets more frustrated.
The report is the Daily Mishap Summary, and it is updated each time a Marine or sailor dies due to an off-base, off-duty, recreational mishap. The most frequent cause of such deaths? Motorcycles. “I’ll be completely honest with you, we’re not doing that well, Marine Corps and Navy-wide,” said Dutko, the Installation and Regional Safety Manager at Camp Lejeune in North Carolina.
Cpl. Benjamin Dao, a flight equipment technician with Marine Medium Helicopter Squadron 161, drives his motorcycle to the next training area of Marine Corps Air Station Miramar's motorcycle range during the practical application segment of the station's basic riders course.
Between October 2007 and October 2008, 24 activeduty Marines died from motorcycle accidents. Those numbers make the Marine Corps cringe, especially since a high-speed bike can be just the tonic for veterans returning from Iraq and Afghanistan, who thirst for recreational entertainment. Though this may seem like a smaller Marine Corps problem,it is actually a microcosm of a larger national issue. “The numbers are saying that [many soldiers] go into a dealer and most of them—if they’re younger—will get on a crotch-rocket designed to go 200 mph on a racetrack,” said Arney Hinden, a 70-year-old Coast Guard veteran and motorcycle enthusiast. “The soldier may have a license from 10 years ago when they were 16. They get on that thing and they don’t even get home. The numbers are saying they’re crashing.” There were 4,810 deaths on motorcycles in the U.S. in 2006, an increase of 5 percent over the previous year, and more than double (2,161) over the decade before, according to the National Highway Traffic Safety Administration (NHTSA). In the Marine Corps, highspeed bikes account for the majority of fatalities. In 2007, 78 percent of motorcycle mishaps in the Marines occurred on a sport bike, compared to 38 percent nationally, according to the 2008 Naval Safety Center. Overall, the national fatality rate increased by 6.6 percent 50
from 2006 to 2007, supporting a recent trend, according to the U.S. Department of Transportation. While automobile fatalities have fallen to the lowest point since 2003, motorcycle fatality rates have doubled during that period, according to the Naval Safety Center. Dutko attributes the increase in mishap rates to a dramatic increase in motorcycle purchases, particularly among vets. With fluctuating gas prices, motorcycles have become even more popular because they are a less expensive means of transportation compared to cars. But the NHTSA has found that among drivers involved in speeding-related crashes in 2006, more motorcyclists (37 percent) died than passenger car drivers (23 percent). Data suggests that the faster the bike, the greater the death rate: More than 70 percent of motorcycle rider fatalities in 2006 occurred either on a bike with an engine between 501 and 1,000 cubic centimeters in size, or an engine between 1,001 and 1,500 cc’s. Dutko says that all Marine Corps bases require activeduty soldiers and sailors to complete a safety course to operate a motorcycle. At Camp Lejeune, three safety courses are offered to soldiers and sailors at the base, and are extended to veterans in the Jacksonville, NC, area. The course curriculum is designed by the internationally recognized Motorcycle Safety Foundation. The 20-hour basic rider course covers classroom and
Sergeant Major John L. Estrada addresses the 10th Marine Regiment on the importance of off-duty safety—speaking about the tragedy of surviving combat only to face injury or death on liberty at home. Estrada discussed specifics such as wearing seatbelts, drunk driving and motorcycle safety.
road time, along with motorcycle operation, including how to start the bike, how to shift gears, how to stop, clutch manipulation, steering techniques and safety equipment. Dutko says it’s a different kind of driver’s education course designed specifically for motorcycles. For more experienced riders with cruiser bikes, there is a class to teach them curve negotiation and braking with a heavier vehicle, which might include a second rider on the back. This course is designed for motorcyclists who ride slower, weightier bikes that require a more tactical approach to navigating the streets. Dutko says the riders who typically enroll in this latter course also tend to enjoy comfort over speed. A new sport bike course is available for motorcyclists whose machines can get up to speeds of nearly 200 mph. This class covers high-speed braking, high-speed maneuvering and tight cornering skills. “It is mandatory for all Marines who own a motorcycle or are thinking about buying one, to come into the safety office and sign up for the basic rider course,” Dutko said. “We recommend that they take the class before they purchase the motorcycle. That way they have the skills needed to operate it when they buy it. “A lot of times, the Marine will buy the motorcycle, and then come in here, and we’ll get them into the class right away. At Camp Lejeune, if somebody comes in
here on a Thursday afternoon and wants to sign up for a motorcycle safety class, I can get him in a class by Monday.” While motorcycle safety courses are readily available to active-duty Marines, according to Hinden, veterans must first seek out the safety courses and pay for them. Hinden, an Annapolis, MD, resident, travels regularly to Walter Reed Army Medical Center in nearby Washington, DC, to speak with injured veterans. He arrives via motorcycle, hands out riding magazines, and talks to them in motorcycle lingo. But more importantly, he focuses on safety, and tries to get dealers and manufacturers to support his plan. He intends to establish an 800 number—or even provide numbers of local motorcycle clubs—so dealers can distribute them to veterans who purchase bikes. In turn, a veteran rider would come to the dealership, offer oneon-one mentorship to a new rider and escort them home with the new bike. “I would meet them at the dealer. If I couldn’t go, I would find another club member to go. My guys would be glad to do it,” Hinden said. “Have somebody escort them home safely, give them some tips… Some of them drive 20 miles and just don’t get home. I’m trying to put it together and I need help.” ABILITY 51
The problem is that, so far, nobody’s taken him up on his idea. Veterans haven’t called him, and companies such as motorcycle manufacturer Kawasaki and insurer Geico have talked with him, but have yet to partner with him. “I really thought some of these companies would jump on this,” Hinden said. “Many of them go after people’s dollars, but it’s time they give something back, especially to these vets. If they weren’t getting killed in accidents, it wouldn’t be an issue. But they are. That doesn’t give [these companies] a repeat customer.” To Kawasaki’s credit, the manufacturer is forging a similar program with former professional motorcycle racer Keith Code, who is adapting his riding school and taking it to military bases across the nation. This year he’s held clinics at 20 bases. “My first priority is to get a format for our involvement that ties in some dealers so we can help Keith expand the program moving into 2009,” said Doug Freeman a public relations representive for Kawasaki. Camp Lejeune has worked closely with area dealerships to provide contact information and handouts to buyers regarding safety instruction, said Dutko. Veterans are directed to the base for free safety courses, while civilians are put in contact with safety course instructors at the local Coastal Carolina Community College, where classes range from $100 to $140 per course. It’s a typical practice around the country to use community colleges to provide civilian safety instruction. Whether it’s on the base or in the classroom, Dutko agrees with Hinden that a new rider can gain a great deal from interacting with a veteran rider. Camp Lejeune promotes mentorship by requiring motorcyclists on base to register with one of the base motorcycle clubs, and to participate in group rides. Harley-Davidson has a similar program called Rider’s Edge, which pairs new riders with seasoned wheelmen. “The best thing that we can do across the board is mentoring,” Dutko said. “If you are a new motorcyclist, riding with somebody else for a period of time or having someone critique your ride from Point A to Point B, and give 52
you pointers along the way, that can do a world of good.” “The seasoned rider has the opportunity to [say] here’s what I saw that you did well; here’s what I saw that maybe you can do better to help keep yourself safer,” Dutko said. “Our [newer] guys come back and tell us, ‘This is a great thing. I learned so much from that guy...’” The future holds great possibility, but Dutko lives in the present. Every day he must face the Daily Mishap report. “When we lose a Marine, it’s like losing a family member,” he said. “And we really take that to heart. We know we’ve got more and more motorcyclists on the road. We’ve got to make sure that we get them the education, training and mentoring they need. We owe it to our Marines—our family—to do that.” Dutko paused as he thought about the staggering motorcycle mishap statistics, and then came up with a number that he’d like to see on those reports: “Zero,” he said. “We’re shooting for zero.” by Joshua Pate Required personal protective equipment: • Snell-approved helmet • Protective eyewear (goggles or full-face shield attached to helmet) • Reflective vest (Motorcycle Safety Foundation approved; no backpacks worn over the vest) • Long-sleeved shirt or jacket • Long trousers • Full-fingered leather gloves • Hard-soled shoes with heels Camp Lejeune Motorcycle Safety lejeune.usmc.mil/mcb/topStory_SemperSafe_02142008.asp Motorcycle Industry Council mic.org Motorcycle Safety Foundation msf-us.org Snell Memorial Foundation smf.org
The ABILITY Build program outreaches to volunteers with disabilities to help build accessible homes for low income families. We are currently seeking corporations, organizations and churches to sponsor more homes. This award-winning program builds homes and awareness, changing the lives of everyone involved. abilitybuild.org firstname.lastname@example.org abilityawareness.org
t might seem that science breakthroughs are all about the first researcher to race through the tape at the finish line, but in reality much of the work is accomplished through team efforts. Different research groups put their heads together, compare data and determine the most productive path to the finish line. At the National Institutes of Health in Bethesda, MD, David Wholley, director of the foundation’s Biomarkers Consortium, and Charles Pucie, director of its public affairs and communication department, manage a $450 million dollar budget—including money from Microsoft founder Bill Gates—to further the goals of medicine. Here they talk to ABILITY Magazine about their most exciting project: the biomarker. ABILITY Magazine: What is a biomarker? Wholley: A biomarker is an objective, generally accepted measurement of a biological process. A common example is the various blood cholesterol measurements or quantifying blood sugar in diabetes patients. These are outward signs that everyone trusts to measure whether you have a disease or not, your susceptibility risk, the progression of the disease, how effective a treatment is for you, and whether or not that treatment has safety issues. All these things are ways that we use biomarkers. So they’ve been around quite a while. Science is now getting to the point where we’re going from the empirical level down to where we’re striving to understand the molecular basis of disease, as opposed to just its outward manifestation. So there is now an explosion of biomarkers that have become available because of this transformation. They offer the hope that we can make biomedical science and research something that is personalized, as well as highly predictive and preventive. ABILITY Magazine: For example? Wholley: One example is imaging in cancer. There’s a whole class of cancer drugs called anti-angiogenic agents. They’re trying to starve a tumor of its blood supply. We really cannot be quite sure how well they work, because it’s difficult to get in there and measure the tumor to see whether it has actually shrunk or not. So there’s a variety of imaging technologies, such as DCE, MRI or PET technologies. These can be pretty expensive. But basically, they seem to be able to tell us not
only whether a tumor has shrunk, but by how much. The problem is that you’ve got all these different makers of different machines to do this, and you haven’t got a common set of standards that everyone agrees measures shrinkage and how you relate that to actual effectiveness of, let’s say, a given therapy. Currently, we have two projects in PET technology, one in lung cancer and one in lymphomic cancer, which look at different kinds of modalities across multiple clinical sites. We’re exploring how we can standardize measurement, because once you’ve got an agreed-upon measurement—what they call “qualified” biomarkers— then the drug industry can use them in their drug development processes. ABILITY Magazine: But is it a standard within one methodology? Are you crossing different silos to come up with this idea of a standard measurement? Wholley: That’s a good question. This process is, I think, just starting out because of the complexity involved within a particular technology. You tend to have protein biomarkers, biochemical biomarkers, imaging biomarkers. But some of the studies that we’re looking at actually involve using both approaches, or using a variety of biomarkers to determine the efficacy of a treatment or to measure the progression of a disease. What we’re really talking about is taking these biomarkers, which appear to have had enough traction in the literature, and developing them. As I say, measuring their effectiveness or refining them in some way, and then “qualifying” them, as the FDA puts it; they don’t use the words “standardize” or “validate” much. The idea is that, at the end of the day, you arrive at something that all the partners agree has value in treating disease, or in measuring the effectiveness of a treatment. The goal is to do things that are as proximal as possible to the drug development process or to clinical practice. Our primary concern is the patient. We’re looking for projects that address an important unmet medical need. It has to be practical and address “a translational aspect,” something we can take from the pure research arena to the bedside. Projects need to be feasible, which is not the same thing as practical. By this, I mean that these can be done effectively in the near term, and that they represent a particularly effective use of resources. There are two ways that you can approach a question. You can start now and say that over the next seven years you’re going to prospectively enroll 500 patients in a trial, it’s going to cost $25 million, and then you’ll begin to do the analysis. Or you can take a look at existing resources out there, and figure out how you can creatively use those to get the same results, given that there’s a tremendous amount of data out there among various companies, we well as in the NIH’s own academic
studies. That’s not to say that we’re not doing trials. In fact, that’s a lot of what we do. But even in those cases, we’re piggybacking off existing trials and trial networks, which in many cases the NIH has set up. One wonderful example is the Adiponectin Project. Adiponectin is a marker that has been shown to relate to glycemic efficiency or, in other words, how blood sugar levels are managed. But there’s been no real conclusive measurement of how that association actually works, and whether it’s completely valid. A few years back, a number of pharmaceutical companies tried to develop a class of compounds called PPAR-gamma compounds to address diabetes. They have a good deal of clinical trial data as a result. They’re at a stage now where they actually could share part of that data. ABILITY Magazine: Is this the Consortium part? Wholley: Yes. So we got four of them together and they agreed to share information. Of course the data is going to de-identified and put into a big pool. You mix it all together so you can’t tell whose is which, to get rid of the biases. Quintiles Transnational Corp., a neutral third party with IT capabilities, is going to manage the data pool. Then a data analyst from Quintiles, and one from NIDDK, the agency of the NIH that addresses diabetes, will analyze the data separately. Each will check on the other, which also helps remove biases. Their results are going to be reviewed by a project team, a kind of committee, which has FDA, NIH, industry, and academic members. This group of experts reviews results; what comes out the other end gets published. If there’s a good result, it’ll get published in a journal. If it’s not significant, we’ll just put it up on our website. That’s an example of taking an existing resource and using it. ABILITY Magazine: How are they going to start sharing their marbles when they’ve invested all this money? Why are they going to partner with other entities if they don’t have something at the end of the line that says that they’re going to get their investment back? Wholley: You’re exactly right. The focus of the consortium is to do things that are in a pre-competitive space. There are things that are really close to commercialization. We’re not funding commercialization. You need to find areas where the companies or other entities are willing to share, and usually it’s something around a clear public health goal, but also something where if you figure out the answer to a problem, it raises everyone’s stature. Because one of the things that has happened over the last five to 10 years is, I think, the growing realization on the part of industry that the competitive part of what they do begins with the molecule. You can’t put IP claims on molecules. ABILITY Magazine: So it’s within everyone’s collective interest to share and potentially get the boost to what they’re doing individually. ABILITY 55
Wholley: Right. So we also look for projects that the consortium can uniquely address, where getting these parties together through this type of organization is the best way to find an answer. These projects require largescale agreement around standardization, and/or scientific expertise of each one of the parties to really move things along. It may also require pooling financial resources. ABILITY Magazine: So you have to figure how the puzzle pieces fit together. Wholley: And they don’t always. We get a lot of suggestions for projects and for one reason or another they don’t work out. The science isn’t right or they don’t fit the pre-competitive mold, or there’s an IP issue or, frankly, at the end of the day, they’re going to take far too long or cost far too much money for what will be an uncertain result.
Wholley: 12 years. We were founded in 1996 by an act of Congress: the Public Health Service Act. Pucie: We really started rolling in 2002. Wholley: But the NIH cannot, except in very specific ways, take money directly from industry. ABILITY Magazine: So this is like a “friends of” concept? Have you heard that term before? Friends of said nonprofit or other entity will work with some government entity, because this entity has these rules and regs. Pucie: Very much like a “friends of the university,” which might raise money from the public to build a stadium that the university perhaps may not be able to erect.
“We manage a Wholley: Yes, it’s similar to that. 2002, we did a lot of eduquarter of a billion Before cational things, but we really research projects around dollars of the Bill & began that time frame. Since then ABILITY Magazine: At the we’ve done about $360 million end of the rainbow, how does Melinda Gates in partnerships. the private company make revenue on shared knowledge? Magazine: Was partnerFoundation money.” shipABILITY your original intention? Wholley: You might look at it this way: It would cost them a lot more money to take on some of these projects, and they might not have the inhouse expertise to do it. Besides, they would lack the community validation of their effort. They could stand up and say, “We found this,” and yet there may not be enough people who agree with their findings. So they’re benefiting from community-based science, taking results and using them in their own research. ABILITY Magazine: So they go off on their own then? Wholley: They go off on their own. Although I will tell you that in many cases this affects projects that they’ve already developed. Because there is, for example, no agreed-upon biomarker for measuring the efficacy of a particular entity, it may be harder for them to get approval for the drug or, once it’s out there, for them to market the drug effectively. I think I’ve heard that 50 percent of people will get the benefit from a drug; the other half won’t. What if you could figure out why one gets the benefit and the other doesn’t? If you had a set of biomarkers to figure that out, it would be a much more powerful case for reimbursement from Medicare, Medicaid and the managed care community in general. So I think industry really does feel that this has benefit for them. It raises all boats to act in concert with one another, the NIH, the FDA and academia. ABILITY Magazine: How long has your foundation been around?
Wholley: Yeah, I think the intent was probably differently interpreted. But I think the idea was to do this. In the early days, the partnerships— Pucie: —tended to be educational. In other words, funding of fellowships, for example, post-docs, pre-docs and the like. Very early on, when this was a twinkle in the eye of members of Congress, in the 1980s, and legislation was being discussed, they thought it might be a way to fund a compensation for some of the government scientists, they could help that whole situation improve, so the partnerships moved into other areas. The legislation was drawn very broadly, and I think the intent of Congress is that the board of directors expects the foundation to be innovative. Wholley: Meanwhile, the conditions that favor largerscale public-private partnerships began to emerge. We basically pioneered some of the early examples, such as the osteoarthritis initiative and the Alzheimer’s disease neuroimaging. Pucie: The Mouse genome. Wholley: Right, the mouse genome and so forth. We currently manage about a quarter of a billion dollars of Bill and Melinda Gates Foundation money and run programs on their behalf. We have funds from other nonprofits as well, managing them on behalf of a significant number of programs to address global health
Pucie: Not, so much stem cells. I’m talking about, I don’t know if we could make a grant to the University of Tirana.
there’s now a lot of them, and in some case it requires a unique process to develop them, standardize them, qualify them, and get them to the point where they can be actually useful to your readership as patients. And we’re one of the organizations, and I think an important one, in getting that work done. Most people believe biomarkers are going to revolutionize medicine, that they are going to provide this highly objective set of measurements as opposed to what we do today, which is sit back, for instance, and see whether you’ve got more red spots or not. That’s really what we’re about. We’re very focused on doing the right kinds of projects, and we’ve got four projects launched, and a bunch more that are nearly ready to go.
Wholley: Or the Kim Il Jong Institute for Biomedical Research.
ABILITY Magazine: How long have you been involved, Charlie?
Pucie: The rules for the NIH are the kinds of rules that apply equally to potential grantees in the U.S. and potential grantees in Europe and the like. I think last year I saw a number that there were grantees in the UK for $35 million or $40 million. Lots of NIH monies go to researchers in undeveloped countries, and one of the main benefits is that this brings in a lot of scientists for exchange programs.
Pucie: Several months.
Wholley: Going back to biomarkers: They’ve been around for a while, but because of our increasing understanding of medicine and science at the molecular level,
ABILITY Magazine: What’s your background?
issues in the developing world. ABILITY Magazine: You’re global? Wholley: About half of what we do is global health work. All of NIH science is globalized. If they receive a good proposal over the transom, they will fund it, unless it’s somehow verboten politically. ABILITY Magazine: Like stem cells?
ABILITY Magazine: You sound like you’ve been around for a lot longer. It sounds like the fabric of this organization is already embedded in you. Pucie: I’ve worked on a couple other projects for the foundation over the last two and a half years.
Pucie: Business. I had 16 years at IBM and then was a ABILITY 57
In Part II of this interview with Assistant Labor Secretary Neil Romano, he continues his conversation with ABILITY Magazine about the coming revolution in the American workforce:
eople with disabilities are the next great wave, and they bring something special, because they have unique ways of doing their jobs. They have no choice. I know that I’ve always had to figure out different, innovative methods to get things done. Even the guy who started IBM said all innovation comes out of diversity. People with disabilities are going to bring innovation to every field. When they bring innovation, it stimulates new products, new services, and new procedures to get business done that will benefit everybody in America, not just people with disabilities.
cate, so entirely new communications devices had to be created. They had to monitor their bodies because they were fragile. They even had to make new foods because their swallowing apparatuses couldn’t operate normally. They couldn’t even move within 10 feet of their ultimate goal. But when these three guys came back from the moon, after meeting all those challenges, they brought with them a significant portion of the gross national product of America as we know it today. What did we really do? We really just made productivity enhancements and accommodations for people who could not survive in a hostile environment. It’s no different for people with disabilities. When they become fully incorporated, it’s going to change America—again.
I can use the obvious example of the curb cut. I always say to people, “When was the last time you rode your bicycle and didn’t ride off the curb cut? When was the last time you pushed your shopping cart off of the regular part of the curb? Which, by the way, 20 years ago, we all did. When we start doing what we can to add those productivity enhancements for people with disabilities, we’re going to see huge changes, because all we’re really doing is helping another group of people deal with a hostile environment. When we tame any environment, we tame it for everybody.
I’ve said many times that when we have the inclusion of people with disabilities in the American workplace, it’s going to be one of the greatest boons to this country since the Industrial Revolution. We will get some of the most incredible products, services and procedures that we will proudly export around the world. Along with the tangibles, we will be exporting a new form of freedom: The freedom to give people the opportunity to reach their full potential, no matter what their ability level. To me, that’s very valuable.
The three people in American history who had the most significant disabilities couldn’t breathe on their own. They had to put on special protective clothing because of the potential for infection. They couldn’t communi-
I firmly believe that we’re all created equal, just as it says in the Declaration of Independence. I have always felt that the founders of America wrote a check that we must try to cash every day. That’s our job. They knew
darn well that this country wasn’t an equal society at the time. But that’s what we must fight for. This is the next great wave of equality in America, and it will move us forward again. I feel I’ve got an incredible product. I feel I’ve got the mother lode for businesses. That’s how I approach it. I approach businesses by saying to them what I think is the absolute truth: If you’re not hiring people with disabilities, you’re going to get run over by all the really good companies that are saying, “Oh, my God, there’s talent there, and we’d better mine it.” And they’re going to get the best and the brightest, and they’re going to get them soon. That’s the way it needs to be. I talk to businesses all the time. They ask me, “Neil, what can we do to be part of this with you?” I say, “You need to devote a portion of your advertising and go out there and say, ‘We hire people with disabilities, and guess what? They positively affect our bottom line.’”
QUIT BEGGING I stood up before a wonderful group the other day, and they had their diversity initiatives. And they held up this sign that said, “We hire people with disabilities because of this and because of that.” And I read their brochure and I held it up in front of this group, the CEO, everyone in the audience, and I said, “You guys are liars. This is a lie. This is not why this multi-national corporation hires people with disabilities. You hire them because they’re talented, and you’re not doing anybody any favors. And they’re making money for the business, because if they weren’t, you wouldn’t hire them in these numbers. You wouldn’t work hard to recruit them. That’s what America needs to understand: People with disabilities contribute. I always say, we have to move to an investment model. Even in government, we invest in our farmers, our students, our troops. How many times have you heard them say, “We invest in our people with disabilities. We have programs for them”? Not too often. We’re used to 50 years of begging. “Please take the one guy with Down syndrome and throw him in the mail room, please, because we’re X disability group in your community, and isn’t that a nice thing to do?” I was sick to my stomach—an organization that I am intimately involved with is doing an ad. So I’m in my car listening to it, and it’s saying: “You know, people with disabilities can work,” da-da-da. Everything I’ve pounded into these people. And then they end the ad by saying, “Now don’t you really want to help these people who need a hand?” I just wanted to drive my car into a pole. They ruined it in the last four seconds! And that’s the problem. The problem is this constant, “Do me a favor.” No, do what’s right for your business and that’ll be the biggest favor you can do, but make sure when you’re doing it, you’re focusing on the fact that 45 percent of all people with disabilities who will get a college ABILITY 59
HEDGE OF PROTECTION To go back to where I started, I think it’s that desire to build a hedge of protection around people, because we care. But instead of freeing these human beings to be whom they can be, we have protected them to a point where we’re now in a situation where we have to canvas business people to convince them that these people are worthy of opportunity. And it makes the sale a little bit harder.
Assistant Labor Secretary Neil Romano
education will not work. As a corporation, you need to ask yourself, “Can I afford to let this happen, to have a college-educated person not work?” I met with a group today that represents 600 major corporations. They said, “We want to hire people with disabilities, but we want to learn how to make our sites more accessible. We realize we’re filtering people out, and we don’t want to do that any more. We want to get involved right now. We heard what you had to say, and we’ve got to do this now, because we’re progressive businesses, and we don’t have a labor pool, and we need people.” That’s the other side of the coin that excites me. Sometimes I think business is ahead of some groups. I remember trying to figure out how the folks at Gatorade went to a half-billion-dollar business from one that was making four-and-a-half million dollars. I wanted to meet with these people, because I’m a marketing guy. I wanted to know what they do. So I met with the president of the brand. The guy goes into a 15-minute rant about Gatorade being better than water. Not that Gatorade was competing with other sports drinks, but that it was better than water! He was convinced. He said, “I can give you 50 reasons why.” I figured he’d give me three or four. He gave me all 50 about why Gatorade was better! We have to believe in people with disabilities and bring a similar zeal that says, “If you’re not doing this, you’re making a mistake.” Not “please do us a favor.” It is a completely different aspect of sale. I say to people all the time, “When was the last time you walked into a Home Depot and they said, ‘Please buy this product. It’s not as good as some of the others you can buy in some other stores, but you know what? Come on, do the guy who made it a favor’” That’s how we do it, and then we scratch our heads when people say, “No, I don’t think so.” I used to call it the day-old bread model. “Please buy this bread. It’s just a little stale. But we promise you, heat it, put butter and jelly on it, and maybe it’ll taste good.” And then we wonder why it doesn’t fly off the shelf. 60
Because I’m sub-Cabinet level, I serve at the pleasure of the President of the United States. I am what’s known as PAS around here, which means Presidentially Appointed and Senate-Confirmed. I was confirmed by the Senate, and I will likely be retired when President Bush leaves office. Of course, the next administration could make the decision to keep me if they want, or until they can fill the position. Those are the prerogatives of whomever is in the Oval Office. I knew I only potentially had a year here, so I put my head down, and I’m going to run until I hit the tape. I’m not going to slow down. I’ll figure out what’s next after this is over. Before this, I was running America’s Strength, an organization I started to help people with disabilities find mainstream employment, and doing a lot of talks. I’ll tell you the truth. I don’t care where I’m going next. When I sold my business six years ago, I committed myself to this mission; it’s what my life is going to be about. Period. I have no other plans—whether I leave this job or stay in it—except to continue to do the same work with whatever platform I have. Whatever I’m afforded, I’m going to use it, because this is not a job for me at all. This is what I have become about: setting other people free. That excites me. I’ve said to people privately many times: I was too young to have marched with Dr. King. I couldn’t be part of the Suffrage Movement. But this is where I can be a part of history. This is an issue in society where things need to change, and they need to change now. We have to convince the American people that this is not just about people with disabilities, this is about Americans, period. Helping every American get to where they deserve to be, which is to be fully integrated into society, where they can contribute, and I truly believe that people with disabilities are going to bring more to the table than anyone ever imagined. I’m sure you’ve been up to IBM and met the gentleman who invented the mathematical algorithm for speech. Did you know anything about this gentleman? He was a Russian refusenik and great mathematician who was thrust off to Israel. IBM finds out about him, and they also find out that he’s been deaf since birth. They bring him to the U.S. to work, and find out that not only is he deaf, but that he only speaks Russian sign language. So this gentleman finds himself in an environment where they’re working with him, but he’s a little bit off.
HELP ONE, HELP ALL Basically, he started working on the mathematical algorithm for speech that is the basis from which Dragon comes. That patent—he’s now got almost 200 patents—is the basis for just about every voice-activated product that you use. Those are his patents. IBM has been leasing those patents out to people, everything from speaking to your navigation system in your car or your telephone. IBM has made billions of dollars off of this gentleman’s invention, which is designed to help him communicate with the people in the next cubicle at work. And that technology gets better and better. People use it all the time. When my 13-year-old daughter was little, we had this switch put in so that she could say, “On,” and turn the lights on. Let me tell you, for a scared little girl it helped an awful lot to be able to yell “on,” when she was going up the steps, and didn’t have to reach that switch. The quality of life for every American has changed because of that mathematical algorithm. A gentleman by the name of Dr. Robert Fishchell lives near our home. He is essentially the Thomas Edison of our time that no one’s heard about. Interesting guy. He worked for biophysics labs. He did little things like invent how to keep satellites from tumbling when in orbit, which then gave birth to every single piece of telecommunications we now have today. Little things like that, as well as the pop-up sprinkler. He invented the heart stent. During conversations with him, there are two things he always says to me. Number one is that less than one-tenth of 1 percent of everything that can be invented for people with disabilities has been invented. And number two is every time you have these conversations where people say, “Who can afford it? Who can buy it?” The fact of the matter is, if you make it, it’ll get purchased. Once again, I cite the great curb cut controversy: “We’re going to spend all this money putting these in, and who’s going to use them?” It’s the same thing. “Who’s going to pay $300 for that?” But if you manufacture two million of them it makes it more economical. Put a universal design in it, and you may sell 20 million of them. And maybe the price drops to $25 apiece. We’re always very short-sighted in that area.
ONE ARM, NO PROBLEM One of the things I’ve done here at ODEP is to get Jim Abbott, the former Major League pitcher, to be a spokesman for us. He’s incredible. I’m a big baseball
fan. What he’s doing is going to baseball games across the U.S., and in the bottom of the third inning, for instance, the announcers will say to him, “Jim, how have you been? Tell me about your no-hitter. What are you doing now?” He’s going to be talking about his work to encourage employers to hire people with disabilities, and looking at what they can do, reminding us. He says: “Can you imagine if the coaches and folks had looked at me and said, ‘One hand? Sorry Jim, you can’t pitch.’ I almost won 100 games in the major leagues, I pitched a no-hitter, pitched in the playoffs, had a season of 18 wins. Certainly my employers didn’t hire me for my looks. They hired me for my left hand, not my right.” He’s going to be talking about that on TV. We just finished something with Little League Baseball. During the Little League World Series, ODEP produced a video about Challenger Division baseball, which is for children with disabilities. We emphasized the fact that Challenger Division is being done because Little League Baseball recognizes that these young people are going to grow up and take the jobs of the future. It’s never been cast that way before. They need to learn all the same things you need at work: teamwork, leadership. These skills need to be taught early on. So we’re using every device we can, including an aggressive public relations campaign to get the word out. Neil Romano is Assistant Secretary of Labor in the Department of Labor/Office of Disability Employment Policy (ODEP) dol.gov/odep americasheroesatwork.gov
ACROSS 1 Aids relief plan 4 J. Roberts and S. Sarandon movie—woman with cancer 8 An end to sex? 9 Goldie Hawn starred in Milton Katselas’ movie about a blind man in the hippie era (goes with 19 across) 13 In favor of 14 Roman street 15 Found on a billboard 17 See 9 across 19 Fall 21 “Way to go!” 22 ___ v. Wade 24 Winner of the Women’s Marathon T54 at the Beijing Paralympics, ____ Hunkeler 25 Air 27 People person, for short 28 Titan’s state, abbr. 30 “Boozefighter” and actor who played T 1000 in Terminator 2: Judgment Day, Robert ____ 33 “You Bet Your Life” comedian 36 Famous female astronaut, Sally Ride was born here 38 Madison Avenue award 39 Taking responsibility for 42 Occupied, as a bathroom (2 words) 44 Medical TV show 45 “Mature” 47 Bill of Rights subj. 48 Liberty 51 “My Favorite Year” performer who struggled with deep vein thrombosis, Lainie 52 60’s apartment 54 Fed. construction overseer 55 “_____ After All These Years” Stevie Wonder song (2 words) 56 Celebrity chef, Sandra who battled with R. Arthritis
DOWN 1 Tom Hanks classic about discrimination and AIDS 2 Some do it with iron 3 Leafy shelter 5 Documentary about the life of a 22 year old man who is disabled physically and mentally (4 words) 6 “____ Twist”, Dickens novel 7 Lost animals 10 “Light my ____” Jose Feliciano 11 Emotional intelligence, for short 12 Wisdom giving herb? 16 “___ not!” 18 Cheerleading cry 20 Top actor who is supporting many charitable causes to help handle poverty and disease in Africa 23 “@#$%!,” e.g. 26 UCLA player 27 Xmas, for one 29 Prize given for breakthroughs 31 Not feeling too hot 32 Really miserable 34 Red Cross, for short 35 Bravery 37 “Anger Management” star, first name 40 “Rigoletto” composer 41 Can you dig it? 43 Taste, e.g. 46 Eastman Kodak, for short 48 Portly plus 49 Unagi, at a sushi bar 50 Sharer’s word 52 “__, I love you” Beatles 53 Cardinals state answers on page 65 ABILITY 63
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to develop our applications, we think now in terms of multi-modal use. Can you use our product with a pen on a tablet PC? Can you use speech with it? Can you use a keyboard with it? Can you use a mouse? Can you use assistive technology devices? You’ll see that we’re going to be stepping up our documentation for developers, testing tools for them, increasing our blogs and information for them and porting labs. You’ll probably see some additional direct investments into the community to enable them to adapt or adopt UI Automation to their products sooner rather than later. We understand that there are some real key issues that are keeping people from investing, and a lot of it has to do with the vendors out there. Just like with us, if you have something that’s working pretty well, it comes down to a matter of do you want to invest to increase the performance of what you already have, or do you want to put in new features? There’s always that push-pull. “Do I really want to take the time to implement a new API when the one I’m currently using seems to work okay?” We’re trying to get the momentum going so that the industry will adapt and make strategic investments to innovate faster. Cooper: Can you give me an example? Hodne: For one we’re going to be releasing a couple of new testing tools in the near future, which we hope will help people more quickly understand what the accessibility issues are and to help them solve problems. So that’s an internal investment we’ve made. I finished a document recently that starts to spell out some of the additional steps that we could take to innovate more quickly, but I can’t give you the details because they have yet to be approved. Cooper: One of the things that I see industry-wide is the error message. It pops up on the screen, but it’s not a click-and-play. Meaning, you can’t click on the message and figure out how to correct the problem simply. The message just describes what’s wrong, and sometimes it’s tough to even figure out how to fix it. Hodne: I know what you mean. For these testing tools, they are geared towards developers or testers of applications. But even with these tools, we’ve created some additional documentation which helps the developer or tester understand the origin of a particular error so it makes it easier for them to understand. Even for developers, if they’re not extremely familiar with the technology, they may also be confused by a simple error message. So we’re trying to be a little bit more informative about what that error really means and what’s needed to correct it. I totally agree with you there. Cooper: I love the kind of program that explains why something is wrong, what it’s going to do to change it, and then you click and it’s corrected. If you could 64
program that into everything you do, everybody would love you guys. Hodne: Yeah, I’m really excited about the way that specifications are developing in W3C, the Linux Foundation, and with the AIA, because I think that we’re getting a much clearer understanding throughout the industry about how we can simplify the display of information through assistive technology tools. Instead of just starting at the top of a web page and reading through all of the controls and all of the information that’s available there, we’re asking if we can do that in a more intelligent way? That obviously requires a partnership between the people developing the web pages, as well as the assistive technologies that enable it. I think, over the next few years, people who use these tools will have better experiences because of these specifications and standards that are emerging now.
A VIEW FROM THE INSIDE We caught up with Loren Mikola, Microsoft Corp.’s Disability Inclusion Program Manager and asked him a couple of questions about what’s doing at the company’s Redmond, WA, headquarters with regards to employees (and potential future employees) with disabilities. Chet Cooper: What do you consider best practices around disability for Microsoft? Microsoft has a strong diversity and inclusion program. There are a number of best practices including education and awareness programs such as disability-related training for recruiters, managers and fellow team members. We also have a comprehensive accommodations program with a centralized budget, and employee affinity groups and networks focused on disability. We provide interpretation and captioning services for our employees who are deaf and hard-of-hearing, and we build orientation and mobility services for employees who are blind or visually impaired. American Sign Language classes are offered to any interested employees. Cooper: What Microsoft programs do you consider strengths for the company in terms of outreach for people with disabilities? Microsoft has a strong youth outreach program that exposes young people to technology and related careers. We ensure that students with disabilities are included in those programs. Some students have gone on to become interns and regular hires. Microsoft also is an active member of the Washington State Business Leadership Network, an organization that educates businesses on the advantages of seeking and hiring persons with disabilities. Finally, Microsoft participates in various outreach events to educate college students and graduates such as those sponsored by Career Opportunities for Students with Disabilities.
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senior executive in two venture-funded health care Internet-based startups. From one of my pharmaceutical clients, I heard about a large-scale follow-up to the Human Genome Project, which was being managed out of NHGRI. I agreed to join the foundation and help manage that project. We have another one that we’re doing on drug safety, which we’re about to launch. ABILITY Magazine: Can you talk about that? Pucie: Yeah, that’s something called the Observational Medical Outcomes Partnership. Essentially the problem it addresses is adverse drug safety events. The way adverse symptoms are currently chronicled is through something called the Adverse Effect Recording System (AERS). This is a voluntary system where, if your doctor encounters a product that creates an adverse effect, he or she fills out a report. They can often do this online, and the information is put into a database by the FDA. That database is available to the public, I believe. The problem is, because it’s voluntary, they can’t enforce data standards, so it really only captures a fraction of the adverse events occurring out there, and gives you no background information. You don’t know whether you have developed this issue because of the drug, or because you’re taking that drug in combination with another drug, or because you’re a smoker and you took the drug... You don’t understand what the clinical context is. The theory is, then, that you can look at observational data, which is electronic health care claims and electronic health records, to see if you can detect these events and then evaluate them, and understand the larger context. There’s a science to this, which is still being developed.
to detect an adverse effect. How do you know you’ve found one, whether you’ve got a false signal or not? How do you strengthen the true signals? And how do you evaluate them? Over the next two years, we’re going to put together a big database, all de-identified, from commercial and other sources, along with input from a research team that really addresses the data, the methods, and the best practices. We will publish it, and put it out into the public domain. ABILITY Magazine: I think everyone’s aware of autism. If something like this was out there on the data of how many children— Pucie: —I think the problem with that is, you’d have to cross-reference a lot of different databases, and there’s a lot of environmental data that you would need to go along with that. I think that would be an extreme example of something that you’d try to track through this. My understanding is that a bunch of studies have shown that there’s no real correlation.
Many people Magazine: The medbelieve biomarkers ABILITY ical community keeps saying that, and more and more peoare going to ple are saying that they’ve found evidence that the CDC revolutionize isn’t sharing with everyone. medicine Pucie: It’s like Lyme disease. There are conspiracy theories everywhere. I
ABILITY Magazine: What are some of the ways that you can use this information?
don’t think anybody’s hiding anything, but that’s just my opinion. Anyway, to go back to the biomarkers consortium, this is really what we’re trying to do. I think these public-private partnerships are increasing in popularity and will be very important in the future of medicine, because getting these different— as you call them, “silos” or as I would say different cultures and organizations—can only benefit the readers of your magazine and patients in general in the end. That’s who we’re focusing on. ABILITY Magazine: Where do the trials occur?
Pucie: Because drug safety is a tremendous cost to industry, it’s a tremendous cost to the patient, and to our health care system at large. So Congress put out something called the FDA Amendments Act in November, and one of the things they said is that the FDA needs to build a big database of this type of information, and use it to create a surveillance system. Then, when a drug comes to market, they’ve got a way to start tracking how it’s being used by the public, and whether they see any signals of adverse drug events. To manage this process, we’re building a public-private partnership with industry and the FDA, and creating a pilot system to test out this capability, and really to focus on the science aspect of it. No one really knows the best analytical methods to use 66
Pucie: You’re using a lot of academic networks to run trials. We’re not picking a pharmaceutical company and saying, “We’re going to fund your trial for drug X.” We’re assuming that once drug X is on its way, or they’re looking to develop a lot of drug X’s, they will need a biomarker to figure out when somebody who has diabetes is getting better. That will be true no matter whether you’re company A, B, C, D, or E. You’re not focused on whether drug company A’s drug is working. You’re basically saying, “We have no way of measuring whether this entire class of agents is objectively being effective or not.” ABILITY Magazine: Are most of the pharmaceuticals competitors?
Pucie: Sure. They’re all competitors. But they’re all focused around curing disease. Your question assumes that everybody already knows how to address this, and it’s just a matter of who’s going to get their drug to market. That’s not the case. People really are lacking tools to measure these things, and when they get the tools, then everybody benefits. That’s where we come in. We’re not about promoting one drug over another or even developing drugs. That’s what the industry does. What the industry is saying is, “Give us a set of tools that we can use in phase 2 and phase 3 of clinical trials, in particular, that are going to tell us when something’s working and when it isn’t.”
proposals, that they have two features that were very important. One was that they incorporate—insofar as is feasible—nurturing and development of the science research infrastructure right in the area of greatest impact. In sub-Saharan Africa, for instance, there would be scientists from those countries directly involved. The other was to have a concrete access plan so that when the findings surfaced, they were universally available and couldn’t be locked up by a for-profit, which would dilute the impact.
If it’s not working, they want to kill it early. If it does work, they’d like a way to be able to prove it to the FDA, so that they can get approval more quickly. And they’d like to be able to target medicines more effectively. Personalizing medicines is a big part of it.
Pucie: This was their intention, though they may not have articulated it in those terms, because this was a whole new idea. There was a lot of conversations, sharing of insights and revisiting the subject, until we felt we got it as close to right as you could possibly get, so we could get rolling at that point. It went from a $200 million grant to the NIH, to the Gateses throwing in another $320 million, because of the impressive quality of the proposals that were coming in. The Canadian Institute for Health Research and the Burroughs Wellcome Fund came in for the balance.
Wholley: Meaning to know what’s not going to work on you, but will work on someone else, and what the side effects are. ABILITY Magazine: How did you get the Gates Foundation money?
ABILITY Magazine: This is what the Gateses were saying coming in, or is this what you were saying?
ABILITY Magazine: So there are a bunch of grants. Wholley: He [Bill Gates] came to us in 2003 and said that they were looking for something that could help them manage these so-called “grand challenges in global health,” which was going to be a program to do grants around very interesting, practical things. How do you develop a vaccine that doesn’t spoil in the tropical heat? It costs a tremendous amount of money to refrigerate these things. The power fails in hospitals in Nigeria all the time, and there goes your precious supply of vaccines. They wanted someone who could manage a project downstream: to figure out what these programs ought to be and then monitor the grant. So that’s what we did.
Pucie: About 43, 44 grants. Up to $20 million for five years. All under the foundation. $200 million are directly administered by us. The initial $200 million. Wholley: We’re very efficient. About 98 percent of the funds go into the programs, and between 2 percent and 4 percent of the monies get spent on the back office, fundraising. Pucie: We’re probably one of the most efficient biomedical nonprofits. Wholley: Maybe too efficient. We feel overworked.
Pucie: I think it’s the contrast to the classical solicitation of grant proposals in general, most of which just don’t get undertaken. We say we want proposals in this, that, or the other area. The follow-up with grantees is very much structured to milestones. Wholley: It’s very proactive, too. I think the Gates Foundation deserves a lot of credit for that. That’s really been their MO. They’ve brought a very strong business approach to this, and are very results-oriented.
Pucie: Yeah, but it’s great work. National Institutes of Health nih.org Grand Challenges in Global Health grandchallenges.org
Pucie: Also, our grants provide real assistance along the way, and cross-pollination between different grantees, when the insights of one have some applicability to another. So instead of putting the money out and waiting for the published paper four or five years down the line, there’s a very close collegial interaction with the grantees to get things done. Also, there was an emphasis that when consortia were put together to make grant ABILITY 67
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