Herschel Walker Issue

VOLUME 2008 HERSCHEL WALKER
JUNE/JULY
THE VOICE OF OVER 50 MILLION AMERICANS
$4.99 Volume 2008 Herschel Walker June/July
MAGAZINE
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ABILITY
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ABILITY
ABILITY 3
E DITOR - IN -C HIEF
Chet Cooper
M ANAGING E DITOR
Pamela K. Johnson
M ANAGING H EALTH E DITOR
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H EALTH E DITORS
Gillian Friedman, MD
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C ONTRIBUTING S ENATOR
U.S. Sen. Tom Harkin (D-IA)
E DITORS
HUMOR — Man’s New Best Friend
10
GREEN PAGES — An Old Fashion Clothesline; Faucet Aerators
12
DRLC — A Place Called Home
14
DOCUMENTARY — Including Samuel
20
COVINGTON — Nobody Walks In Texas
22
PATE — Winter Sports Clinic Highlights
28
OUCH! — Relief for Fibromyalgia
32
ABILITY ON ASSIGNMENT — Qatar, Shafallah Forum
34
GAIT RESEARCH — Using Chaos For Good in the Middle East
42
HERSCHEL WALKER — On Getting Help and Getting Better
52
INCLUSION — Making Strides at the Boys & Girls Club
56
BEST PRACTICES — Sprint Has Your Number
60
UCP — A Ride to Raise Funds and Awareness
62
CROSSWORD PUZZLE — Guess Your Best
64
ESSAY — Spread Respect
66
EVENTS & CONFERENCES
74
Walker Bounces Back p.42
A Return to Qatar p.32
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ABILITY 5
HEALTHY ENTERTAINMENT
T
he movie Michael Clayton received the “Bipolar
Disorder Depiction Award,” while Georgia Rule
and TV’s The Simpsons were also honored for
providing information about health and social
issues at the recent12th Annual PRISM Awards.
Music, comic books and interactive entertainment were
also recognized for their commitment to accurately
depicting addiction and health issues by the Entertainment Industries Council, Inc. (EIC), the Substance
Abuse and Mental Health Services Administration
(SAMHSA) and the FX Network.
“Today, accurate media portrayals of recovery among
those suffering from addiction and mental illness offer
realistic hope to people with these illnesses as well as to
their friends and loved ones,” said Terry Cline, Ph.D., a
SAMSHA administrator.
“With over 440 entries, this years PRISM Awards is a
significant statement from the entertainment industry,”
said EIC president and CEO Brian Dyak. “Not only is
our industry working to put forth accurate messages
through creative stories, but we are also providing powerful messengers through the actors’ characterizations.”
ABC’s Grey’s Anatomy, One Life to Live and The View
took home trophies. NBC’s ER, a CBS public service
announcement and HBO’s Sopranos, which won or its
depiction of mental health, were also recognized. Winners also included: James Denton of ABC’s Desperate
Housewives, Casey Affleck, who wrote and directed
Gone Baby Gone, and Sally Field and Dave Annable for
Network’s Brothers and Sisters.
“By spreading the truth about recovery and the benefits
it holds for all members of our society,” Cline added,
“the entertainment industry has been an effective force
for positive change.”
www.prismawards.com
SCORE ONE FOR HEALTH ED
A
llergan, Inc. recently teamed up with the National
Hockey League’s (NHL) Rem Murray to launch
the BOTOX Dreams campaign, which recognizes
people living with the challenges of cervical
dystonia (CD).
The condition is a chronic, painful neurological disorder
that is characterized by involuntary spasms of the neck
muscles that cause twisting, repetitive movements or
abnormal postures of the head, and affects about
125,000 Americans. It is the third most common movement disorder after Parkinson’s disease and tremor.
Murray was forced into early retirement from the NHL
due to the debilitating effects of CD. Fortunately, following physical therapy and treatment with BOTOX
(Botulinum Toxin Type A), he was able to return the
Edmonton Oilers and played an important role in the
drive to the Stanley Cup Finals in 2006.
“I was 31 years old and living my childhood dream of
playing professional hockey when I was diagnosed,”
said Murray, who set an NHL record for most regularseason games played in one season. “I thought my
career was over. I joined this campaign because I’m
committed to raising awareness of CD. I want to help
and give hope to others who are living with this disease
and suffering in silence.”
As part of the campaign, Allergan will provide grants of
$10,000 each to fulfill the philanthropic “wish” of four
CD patients. The “wish” is to provide a service and/or
additional resources to a philanthropic and communityfocused program of their choice, such as community
libraries, senior centers, police and fire departments
and/or charitable organizations. Entries must be
received by July 21, 2008.
www.botoxmedical.com
MEDICATION MISUSE
A
quarter of American seniors who are disabled
reported using at least one prescription drug that
was inappropriate for their age, according to a
recent report by the Agency for Healthcare
Research and Quality (AHRQ). Thirty drugs, which
included Xanax, Demerol, Darvon and Procardia,
proved ineffective or posed a high risk of side effects for
that particular population. Only about half as many (13
percent) elderly people without disabilities reported
inappropriate medication use, according to 2004 data.
AHRQ, a Federal agency charged with improving the
quality, safety and effectiveness of American health
care, found that misuse of prescription drugs was more
common among people with complex disabilities (27
percent) than those with basic disabilities (23 percent).
www.ahrq.gov
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ABILITY
DRUM THERAPY
T
he world’s largest manufacturer of high quality
drumsticks and drum accessories has joined
forces with DAD (Drums and Disabilities) to
launch a Global special education curriculum
called the Vater Percussion/DAD Program Drum Therapy Initiative. The campaign helps children with Autism,
Dyslexia, ADD, ADHD, Tourettes Syndrome, ODD,
Aspberger’s and other disabilities develop and enhance
retention, coordination, self-esteem and physical and
cognitive functioning through drumming.
“Statistics indicate the percentage of disabilities present
in children has increased over 47.9 percent over the past
10 years,” said Pat Gesualdo, Vater Percussion Special
Education Program Director, and DAD Program President/CEO. “The significant growth of the disability population signals an opportunity to meet the needs of these
youth.”
As a result, psychologists, occupational therapists, physical therapists, music therapists, special education teachers and drum instructors throughout the world are using
drum therapy to help their special needs students and
patients develop physical and cognitive functioning.
Vater Percussion will help promote this global
education initiative with an exclusive:
www.vater.com
www.myspace.com/patgesualdo
www.myspace.com/dadprogram
www.myspace.com/vaterpercussion
YOU’RE HIRED!
M
ontage Resort and Spa in Laguna Beach, CA, was
honored recently for its role in providing employment for men and women with developmental disabilities. The resort received the Employer Award
from the California Department of Rehabilitation.
Montage partnered with Vocational Visions, a Mission
Viejo, CA-based nonprofit that provides a range of supportive services to Orange County men and women with
developmental disabilities. Vocational Visions helped
the resort train the workers.
“The entire Montage staff is inspired by the hard work
and dedication of our Vocational Visions associates,”
said Carol Reynolds, director of Human Resources for
Montage Laguna Beach.
Founded in 1974, Vocational Visions daily serves over
400 adults with a wide range of disabilities.
www.montagelagunabeach.com
www.vocationalvisions.org
A SPCEIAL SPLEL CHCEKER
G
hotit offers unique writing and reading online
services for people who suffer from dyslexia,
dysgraphia or people who are not native-English
speakers. Ghotit’s first service is an online context sensitive spell checker.
Standard computer spelling and grammar checkers are
designed for the needs of the general population who
demonstrate average spelling abilities, and whose
spelling mistakes closely resemble the requested word.
Unfortunately, conventional spell checkers don’t work
for everybody.
The Ghotit team has developed unique spellchecking
and spell-correcting algorithms designed for the dyslectic community. Testing of the spelling assistance program has resulted in 90 percent success.
www.ghotit.com
FROM SILENCE TO SOUND
H
ear and Now, currently showing on HBO, chronicles a couple’s decision to undergo risky cochlear
implant surgery. Irene Taylor Brodsky’s personal
film memoir won an audience award at Sundance, and chronicles her parents, Paul and Sally Taylor’s journey from a comfortable marriage of silence
into a new, complex and challenging world of sound.
Both 65 and deaf since birth, they were pioneers in the
deaf community. Sally worked as a teacher and college
secretary, and lent her expert lip-reading skills to law
enforcement investigations, while Paul, an engineer and
retired professor, helped develop TTY, a widely-used
telecommunication device for the hearing-impaired.
The film is a love story about two people who found
one another and grew together, their bond strengthened
by the challenges they faced and overcame as a couple.
The story also recounts their childhood years spent
learning to communicate in a special school, experiencing the stigma around deafness, and overcoming the
challenges of being deaf parents of hearing children.
Hear and Now also explores the psychological dimensions of adapting to the challenges of hearing for the
first time. “It’s like a hammer in my head—bang, bang,
bang!” Paul says of a flock of geese flying by. Sally,
enchanted by her lakefront surroundings in upstate
New York, delights in the sound of water flowing gently over rocks.
www.hbo.com/docs/programs/hearandnow/index.html
ABILITY 7
HUMOR THERAPY
W
hat in the world would we do without computers? I could see not having a phone. Who
likes to make small talk with bill collectors
anyway? I could even see not having a television.
Believe me, I can make it in this world without Project
Runway. But I can’t live without my computer.
I don’t know how I got into such a symbiotic relationship with this technological beast, and yet she’s become
my best friend in the whole, wide world. I haven’t forgotten the old days when I used a typewriter, and spent
half my time correcting every mistake with Whiteout or
correction tape. It would take me an hour to write a
paper and three days to fix the misspelled words. I so
remember having to look up information in a, uh, book.
(Those things with pages between the covers.) How the
encyclopedia sales people must despise Google. Those
were horrible times, when you actually had to know the
alphabet by heart.
Computers are simply amazing. You can further your
knowledge of any subject in a matter of minutes. Last
week I found out that the Queen of England was actually a real woman. Very different from the queens of
America. I also read that you can clear up acne by
drinking bleach. (I’ll just soldier on with my zits.) You
can even find out within seconds when Britney Spears
went to the bathroom. How cool is that?
My computer knows me better than anyone. It has me
by the Internet cable. If it wanted to blackmail me,
there’d be nothing I could do. It knows where the bones
are buried. My computer even knows that I listen to The
Carpenters and Celine Dion. Definitely, not secrets I
want out in the open. It knows what I’ve plugged into
my search engine. In my defense, I was just curious
about erectile dysfunction. As for the pornography, I
needed to make sure that my bank-teller sister wasn’t
moonlighting again.
8
ABILITY
Okay, we finally hit the hot-button subject. It’s hard to
ignore porno sites when you’re constantly bombarded by
skimpy pictures of chicks in lacy undies, or such subject
lines in your mailbox as “busts loose and panties free.”
This stuff can pop up anywhere. (The porno sites, I mean.)
For instance, if you put “refinancing my home” into
Google, one or two of the searches will say “refinancing
girls in thongs.” You try, but you can’t fight this stuff.
We’re also harassed with ads: Crap that pops up when
you’re in the middle of researching something really
important, like “untraceable poisons.” These ads—
everything from Viagra to mutual funds—are annoying.
I wish that pop-up Scottrade helicopter would crash.
Obviously, these ads are intended to get you to purchase
things. You don’t even have to leave your home to shop.
That’s right ladies, you can do damage right on the computer. No more having to drag a kicking and screaming
man to the mall with you. All the clothes you need are
right there on the Internet. Just put your guy’s credit
card number on the shopping site, and 48 hours later
you’re wearing that new blouse. I know it’s not as much
fun as putting your fella through the hell of watching
you try on things at the mall, but then again you don’t
have to put yourself through the hell of filling up your
tank with $4 dollar a gallon gas.
Everything we own is now on our computers. Our documents, movies, songs, pictures, financial statements. We
pay bills on line because check writing is exhausting,
and because one click of the button and you’re done. It
leaves you little time to contemplate how you’re actually going to cover the funds.
We even put our home movies on the computer for the
world to see, as if the world isn’t bored enough. I can’t
describe what it’s like to watch my three-year-old
daughter dance in the kitchen while the dog runs around
her. Wait, yes I can, it’s stupid!
On the other hand, I don’t really mind the videos of
teenage clowns skateboarding off rooftops. (They
probably won’t be with us too much longer, anyway.)
Why make a fool of yourself in private, when you can
go public and show the world what a jackass you are?
YouTube has every video clip that you can think of,
and two or three of them are actually good.
Which brings up another topic: Every time you turn
around, your computer proves to you that it can do
something totally new and amazing. At first you could
just type documents and print them out. Now you can
steal music, edit video, play games, “fly” over someone’s house and even find out what it’s worth. You can
research medical cures, too. Just don’t expect a moneyback guarantee. You’re on your own there, Pal.
How can anyone doubt Darwinism? Computers are
clear evidence of evolution. My biggest fear is that one
morning my computer will blurt out, “Hello Hal, what’s
on the agenda for today?”
The downside of these machines are the technical problems. You’re in the midst of doing something—usually
extremely urgent—and the damn thing freezes up. Your
heart begins to race. You frantically strike the keys. You
swear. You pray to God. You swear again. You slap your
computer. Finally, you use all your technical knowledge
and, as a last ditch measure, you unplug the thing, and
then plug it back in. It’s just got to work! Nope. Now
your life is on hold until your 10-year-old neighbor gets
home from school, and comes over to do whatever he
does while you sit there and say, “Yeah, I was gonna try
that.”
If you are diagnosed with cancer, Lupus or syphilis that’s
bad, but not as bad as when your computer gets a virus.
Everything could be destroyed or stolen. It’s weird
though;, thieves always steal funds out of your account,
but never take your debt. How I wish they would break
into my bank account and pay off my credit cards. We
need more modern-day Robin Hoods online.
OMG, the email thing is fantastic. What a great way to
piss away the day. Nothing like sitting at work and being
paid to read jokes or look at pictures of naked people on
mo-peds. Email is also good for keeping in touch with
that old friend, so you don’t have to visit. You even have
time to think up a fool-proof excuse. “Oh, I’d love to see
you, but that weekend I’m cleaning the cat box.” These
are the peeps that you like to have as back up in case you
visit your hometown and need a place to stay, but don’t
have money to shell out for a hotel room.
The other great thing about emailing is that you no
longer need to make that dreadful phone call face-toface. You can simply fire off a text message saying you
still don’t have the money quite yet, or let the boss
know that you won’t make it into work because you
have a scratchy throat aka a helluva hangover.
Email allows you to laugh at jokes that you can no
longer laugh at in public. There’s always that friend who
must forward you everything that comes their way. It
might be a prayer that could change your stinking life
and make you a millionaire—if you forward it to 10
people. It could also be a sappy story about other people
who have more of a stinker life than you do. Don’t you
just love those? Sometimes you get something that has a
moral to it and is supposed to make you ponder. Can
you say trash bin?
We can’t forget what the computer has done to bring
people together. I’m talking about dating sites. You
know, where people put up pictures when they were 20
years younger and weighed 60 pounds less, claiming
how much they value honesty in a relationship. Everybody’s profile is of the perfect human being. He or she
describes how much they like to exercise, read books,
avoid fast food and spend time with that special someone with whom they can “just be themselves.” (Hey,
being themselves is what got them kicked out of their
last relationship.)
Once you’ve found the picture of your dream lover, you
trade a few emails to begin a new relationship. If you’re
a girl, you’re hoping to meet a man with money. If
you’re a man, well, you’re just hoping she’s not into that
long-term thing. Soon you take it to the next level—
Instant Messaging. Whoo-hooo. The best thing about
IM’ing is that you’re completely hidden from that person, and so you have ample time to think up a good lie.
BABYLUV: “Why did it take you so long to answer
iftell me you were married?”
TOTALDAWG: “I had to go in the other room and vacuum the rug. When you say married, how do you mean
that?”
In the old days when you talked to a potential date on
the phone, every “um” and “ah” gave away your deceptive replies. With IM’ing, the skies the limit. It’s addictive. You rush home from work, exited and horny, hoping to spend your evening IM’ing this new Internet love.
The steam builds and, finally, the only way to cool your
jets is to actually meet this person face to face. That’s
when the fairy tale begins to unravel.
Still, we’ve got no choice but to surrender to our computers. We can go days without our car or our spouse,
but we can no longer live without our laptops and desktops, nor our access to the all-knowing, all-seeing,
omnipotent Internet. Could you imagine a world without
the computer? It’s simply unfathomable. What would
the human race do? Spend more time with family? Perform the jobs they were actually hired to do? Read
ABILITY Magazine? I shudder at the thought.
“Ham on
a Roll”
by Jeff Charlebois
ABILITY 9
MIX IT UP
S
ink faucets can gush several gallons of water per minute, especially when little ones splash
around instead of wash their hands, which you sent them in to do 20 minutes earlier. To stem
such a wasteful tide, consider installing aerators in your faucets. These devices mix air with
water as it leaves the spout, reducing flow rate and increasing wetting efficiency.
Aerators have flow rates that range from .5 to 2.75 gallons per minute (gpm). Even the latter
can reduce water waste significantly. Of course, you want some water pressure, right? So 1
gpm is probably the lowest acceptable flow rate for bathroom sink use, and a flow rate of 2.5
gpm will work best for the kitchen. With a price tag of $3 to $10 each and potential savings
of 100 gallons of water per year, per faucet, why aren’t you on your way to the hardware
store to stock up now?
DEEP SLEEP
I think most of us believe that our screensavers conserve energy, as well as prevent
monitor wear and tear. Not so fast. A screensaver that displays moving images consumes just as much electricity as when your screen is in the active mode, and a
blank screensaver is only slightly better. Dang!
The best screensaver also happens to be the biggest energy saver. It involves
turning off your monitor when you’re not using it. Your next best option is to
use your computer’s power management feature to automatically shut the monitor down when it is not in use.
Speaking of which, how often to you walk away from your computer for hours
at a time? I know I do. During those periods, your desktop or laptop continues
to chug away, eating up oodles of energy. This is where a quick trip to your
Control Panel comes in handy. For PC users, go to your Power Options dialog
box and choose the lowest Monitor, Hard Disk and System Standby settings
that you can live with. The Environmental Protection Agency estimates that
using a computer’s “sleep mode” reduces its energy consumption by 60 percent
to 70 percent. For Mac users, hold down the Apple icon, scroll down and select
the Sleep option.
Also, despite what you may have heard, leaving your computer on overnight is far
less efficient than shutting it down and booting it up the next day. When you turn
off your system and, even better, cut off the power source via your power strip, you
lower energy usage, reduce mechanical stress and prolong the computer’s life.
HANG OUT
Sometimes to move forward, you must look back. In this case, it’s to the age-old practice of hanging your laundry out to dry. It was an idea that I tossed around for a while,
and finally acted on. Besides being kinder to the Earth and saving oodles of energy,
over a six-month period line drying can prevent 700 pounds of carbon dioxide
from escaping into the environment. Clothes dried on lines also last longer and
smell better, too! Bonus feature: Kids dig hanging laundry.
A couple of tips regarding clotheslines: Plastic rope won’t sag over time the way
regular cotton rope will, and plastic clothespins last much longer than their wooden counterparts. Also, tossing your towels in the dryer for a few minutes after taking them down from the line will help make them softer and less stiff.
I invested in an umbrella-style clothesline, and I love it! If you don’t have much
room, there are smaller, more compact versions. On a warm day, I can get an entire
10
ABILITY
load up, dry it, take it down and put it away in about the
same time it would take to dry the clothes in the dryer.
Besides, there’s something wonderfully peaceful about
spending a few minutes out in the sunshine, listening to
the birds sing and hanging laundry. Granted, you may
feel like your grandmother, but at least your skirt won’t
be pulled up under your armpits—unless you go in for
that look.
TOILETRY BAG CHECK
Ever wonder what, exactly, is in your fave shampoo,
antiperspirant or lotion? Ever wonder if there’s something in there that might (gasp!) not be in your best
interest? While you may not be shocked by the presence
of petroleum, what about lead? Mercury? Cow parts? Or
human placenta?
To find out, visit Skin Deep, the Environmental Working Group’s database of cosmetic safety. Skin Deep
allows you to search by company and product type
and/or name. It gives you a 0-10 score, with 0 being
best and a 10 meaning you might as well be washing
your face with nuclear plant run-off water. Website topics include information on packaging, ingredients, disease and toxicity levels.
One of the best features is the “What not to buy” section, which you can find in the website’s research area.
If nothing else, steer clear of these nasties. Some are just
flippin’ scary. Even more important to parents is the
Children’s Products Guide—a link in the upper right
hand area of the homepage.
“Due to gaping loopholes in federal law, companies can
put virtually any ingredient into personal care products,”
the website states. “Even worse, the government does
not require pre-market safety tests for any of them.”
Take note: Just because a product is organic or natural
doesn’t mean it’s completely safe. Believe me, I have a
few beloved cosmetics that have made a quick exit from
my daily routine.
by Kristen McCarthy Thomas
To access Skin Deep and info on cosmetics:
www.cosmeticdatabase.com
The Environmental Working Group
www.ewg.org
Kristen McCarthy Thomas is a public relations specialist with an integrated marketing communications company in Southern California. She
leads her company’s Environmental and Sustainability Task Forces,
helps its 70-plus associates “green up” and writes a related blog at
www.just2hands.blogspot.com
ABILITY 11
A PLACE CALLED HOME
W
e all need homes that we—and those who visit us—can get around with ease. This is
important for families as well as communities. The disability rights movement has
always been a champion of accessible housing and independent living. Too often, however, society has assumed that people with disabilities would simply live in nursing homes or
rehabilitation centers.
One important way that homes often fail to meet our needs is that we are unable to use walkers,
wheelchairs or scooters to enter the home, go to bathroom or maneuver around the kitchen.
Stairs, which are still built into many homes, can pose additional barriers. They not only block the
path of persons who use wheelchairs and walkers, but also many seniors who can no longer continue to live in or enjoy their homes or to visit friends, relatives and neighbors. Stairs present a problem for
mothers with infants in strollers, and for students who use rolling bag to carry books.
Unless society makes changes now, people with disabilities will continue to be non-integrated members of
society. States and local communities must enforce current laws and enact new ordinances to ensure that
accessible homes are built and readily available. Only by working together can we encourage changes that
ultimately benefit us all.
An accessible home is one that is designed with such special permanent features as grab bars in the bathrooms, which allow people with some disabilities to live there. An adaptable home allows an owner to adjust
a unit to suit the access needs of the resident. For example, an adaptable home would have reinforced walls
around the toilet so that grab bars could be installed. Accessibility and adaptability features are inexpensive
to build into newly constructed dwellings, and there are an increasing number of products that are beautiful,
architectural and functional.
A terrific example of incorporating attractive accessible element is the Louvre Museum in Paris, which made
a wheelchair lift a centerpiece in the middle of the iconic landmark. The lift’s round, steel and glass design
operates through the middle of the site’s spiral staircase. Though not a housing example, the lift represents
how accessible elements, and even those that stand out, can be incorporated into structures with style. If
accessible, yet elegant design elements are incorporated from the beginning, consumers may begin not only
to accept, but seek out these features in their homes.
Some federal laws require these elements be installed in newly constructed apartments and condominiums.
For example, the Federal Fair Housing Act applies the concepts of adaptability and accessibility to seven
key areas:
• Accessible building entrances on an accessible route
• Accessible public and common-use areas
• Usable doors
• Accessible routes into and through the unit
• Light switches, outlets, thermostats and other environmental controls in accessible locations
• Reinforced walls in bathrooms for later installation of grab bars
• Usable kitchens and bathrooms
The Department of Housing and Urban Development (HUD) has devised a useful and informative design
guide that explains the requirements for construction of multi-family residences, including apartment buildings and condos built after 1991.
While the Fair Housing Act will improve the situation in certain circumstances, we will need a much broader
application of disability access standards as the population grows. Some states and localities are thinking
ahead. For example, California state law requires that developers of new housing provide to buyers a list of
universal accessibility features that would make the home entrance, interior routes of travel, kitchen and
bathrooms fully accessible.
Additional features include visual doorbells, accessible levered door handles, lowered closet rods and shelf,
sink and countertop workspaces that can be repositioned or enhanced by a contrasting-edge color. On the
floor level, contrasting designs can mark accessible routes and work areas. Anti-scald devices in plumbing
12
ABILITY
fixtures and under-cabinet lighting in bathroom and kitchen areas, for instance,
can prove important safety features.
If California can respond to consumers’ requests and require a developer to provide elements beyond those outlined by the Fair Housing Act, other states could
as well. These benefits may also add value to a home and enhance sale and
resale prices. This may be especially attractive to Baby Boomers who are growing older, and often caring for aging parents.
Some cities are responding to this need by requiring that new developments
include a minimum percentage of accessible or adaptable housing. Murietta, CA,
for instance, enacted a landmark ordinance that requires developers to make 15
percent of new homes and rental units accessible to people with disabilities.
These dwellings include level thresholds so wheelchairs and walkers can pass
easily, walk-in showers on the ground floor, wide doorways and hallways, and
reinforced walls for grab bars.
These requirements, which are relatively inexpensive, can be incorporated stylishly and prevent the need for more costly adjustments later; they also fall
roughly within the guidelines for “visitable” housing standards. As was mentioned earlier, the goal in that instance is to provide features that allow guests
with disabilities to come a-calling, while allowing the resident to remain in the
housing over time as his or her physical needs change. In general, visitable
homes comply with basic access requirements and include at least one entrance
with no steps, 32-inch clearance through all interior doors (including bathrooms), and at least a half bath on the main floor, according to the National
Organization on Disability. The intention is that a person with a disability can
visit without having to be lifted up stairs, can enjoy a meal and be able to use a
first floor restroom.
To ensure a continuous supply of accessible housing, advocates must continue to
monitor and enforce the Fair Housing Act and other laws of its kind. Now the
pressure must be brought to bear on more single-family residences.
Several ordinances require visitability features in housing that receives local
public funding. The first ordinance of this kind was passed in Atlanta in 1992,
and requires certain visitability criteria for new single-family dwellings, duplexes and triplexes that receive city assistance. By 2002, more than 600 homes had
been built in Atlanta under this ordinance. Naperville, IL, and Pima County, AZ,
are also among the few localities that require visitability features in new singlefamily homes.
Widespread availability of accessible housing can mean the difference between a
population that is an integrated, vibrant component of society, and one that is
segregated from family and friends and dependent on others or the government.
Progress doesn’t happen by chance. It takes a concerted, sustained effort. The
good news is that best practices exist and we can and should learn from them.
From the accessible homes of small town Murietta, CA, to the accessible taxis of
a great London metropolis, we have glimpsed what is possible.
by Eve L. Hill and & Shawna L. Parks
Eve L. Hill is the former executive director of the Disability Rights Legal Center, and Shawna L. Parks is
director of DRLC’s Civil Rights Litigation Project.
www.disabilityrightslegalcenter.org
The Mission of the Disability Rights Legal Center, formerly the Western Law Center for Disability Rights,
is to promote the rights of people with disabilities and the public interest in and awareness of those rights
by providing legal and related services. We are located on the campus of Loyola Law School in Downtown Los Angeles and work with Loyola Law students in all of our programs.
ABILITY 13
Isaiah Habib (then 7), right, comforts
his brother, Samuel Habib (then 4), in
the intensive care unit of Mary Hitchcock Memorial Hospital. Samuel had
recently come out of a medically
induced coma.
Photo(s) Dan Habib, from his documentary film Including Samuel
14
ABILITY
F
our years ago, one of my sons lay in a medically induced
coma. Samuel was four years old and had developed pneumonia from complications following a tonsillectomy. As I
waited by his bedside, one of his doctors, Dr. James Filiano,
encouraged me to photograph the experience, perhaps as a way
of managing my fear. That was the moment I began to move
towards documentary filmmaking, which was a new direction
for me professionally and personally.
ABILITY 15
Samuel Habib sits on the lap of his father behind the
steering wheel of his grandfather's sea plane as they
prepare for flight.
Photo by Sage Wheeler
L to R: Isaiah Habib (now 11), Betsy McNamara, Dan Habib and
Samuel Habib (now 8)
Soon after, I began working on Including Samuel, a 58minute documentary that was released last year. As a
father and as a director, my experience with the project
helped to calm my fears, while pushing me to examine
my biases. The film became my outlet for processing a
new reality in our lives: We had a child with a disability.
When Samuel was about one, we found out that he had
cerebral palsy, which means his brain has trouble controlling his muscles. He uses a wheelchair, and it’s difficult for him to talk.
My wife Betsy and I would stay up nights, comparing
notes: What did Samuel do better that day? What did he
do worse? We weren’t new parents; we had an older
16
ABILITY
Samuel high-fives Senator Barack Obama.
son, Isaiah, who was then four. But our youngest child’s
disability tested us in new ways.
“How can he get a full education and go to college
when he can’t hold a pencil?” Betsy wondered aloud.
Maybe Samuel’s inability to hold a pencil wouldn’t be
such a big deal. What if his condition were simply considered another version of “normal”? What if he participated in everything that everybody else did?
I made Including Samuel to chronicle our family’s
efforts to mainstream our son into our neighborhood
school, into social activities intrinsic to our community
and into the daily routines of our family—every aspect
of life. This central thread runs through the film.
I wanted audiences to get to know Samuel, who wrestles
with his brother, loves t-ball and wants to be an astro-
naut when he grows up. Yet he is only eight, and relies on
others to continue to include him. This will likely become
more and more challenging as he gets older.
I also made the film to learn from the choices other people with disabilities and their parents have made. I wanted to see how these choices have shaped their lives. So
Including Samuel also documents the experiences of
Keith Jones, Alana Malfy, Nathaniel Orellana and
Emily Huff, along with their families, educators and
their communities as a whole.
This tale began 20 years ago when, as a newbie staff photographer for the Concord (NH) Monitor, I photographed
a story at one of the first local elementary schools to
include kids with disabilities in mainstream classes. I
cared about the topic, but it didn’t have much relevance
to me at the time. Today, Samuel is in second grade at
this school, Beaver Meadow, and I think about inclusion
every day.
As Samuel’s dad, I am forced to look at my own prejudices. In years past, when I saw people who couldn’t
walk or talk, I often assumed that they weren’t as smart,
as capable or as worthy of getting to know as others
who did not have these disabilities. Now I wonder Is
that how the world sees my Samuel?
Recently, Betsy and I decided to attend the Disability
Leadership Series at the University of New Hampshire
Photo Lori Duff/Concord Monitor
During a t-ball game,
Samuel uses a
“Bronco” all-terrain
walker to hit and get
around the bases.
Samuel, at 3 years old, sits in his supportive
corner chair and smiles at a school friend.
ABILITY 17
Emily Huff of Concord,
NH, looks in the mirror
wearing a cape she
created. Huff has
schizophrenia. “It gives
me courage,” she said
of the cape.
Keith P. Jones turns on a boom-box with his foot while teaching
teenagers in a Boston music and theater workshop. Jones, who has
cerebral palsy, is a leading disability rights activist and hip-hop artist.
Alana Malfy walks
down the hall at Pembroke (NH) Academy, a
public high school. She
is part of a joint program between the
school and the University of New Hampshire’s Institute on Disablity that works to fully
include students with
the most significant disabilities into regular
classrooms.
Nathaniel Orellana, a firstgrader who has autism, does
a greeting exercise at the
Haggerty School in Cambridge, Mass. The school has
been recognized as a model
for inclusion of children with
disabilities.
Institute to learn how we could be more effective advocates for Samuel. We heard from disability rights leaders such as Norman Kunc, who spoke about his “right to
be disabled.” He told us that if he were offered a pill to
cure his cerebral palsy, he wouldn’t take it. “I would
have to create my identity all over again,” he said. “I
like who I am, I like the work I do.” The Leadership
Series helped us to see Samuel’s disability as an intrinsic part of who he is.
My hope is that my film will inspire the public—especially anyone connected to education—to talk about
inclusion in a more informed and innovative way. I also
hope they will get to know my son at the same time.
Making this film helped me envision the life we want
and expect for Samuel. We have a supportive network
of teachers, therapists, relatives and friends who help us
work towards that goal every day. And there is Samuel
himself whose smile and persistence make clear his own
vision of happiness.
18
ABILITY
Samuel brought the disability rights movement into our
home. It came with lots of questions: Will his middle
and high schools continue to fully include him? What
about the times when illness forces Samuel to miss
weeks or months of school? As an adult, will he find a
mate? Will he get a job that fulfills him? Only time will
reveal the answers. But for now, I know that Samuel
loves life, he loves to laugh and he loves the Red Sox.
Ultimately, I am certain that my son will teach a lot of
people, which is a good thing because the world has a
lot to learn.
by Dan Habib
Dan Habib directed, produced and shot the award-winning Including
Samuel. He is the filmmaker in residence at the Institute on Disability at
the University of New Hampshire. In 2006, he was named national
Photography Editor of the Year for papers with circulations of 100,000 or
less. Until recently, he was photography editor of the Concord Monitor.
His work has appeared in Time, Newsweek and the New York Times.
Habib and his family live in Concord, NH.
For a film trailer and more info, visit:
www.includingsamuel.com
ABILITY 19
W
est Texas is the size of New England, with
enough room to tuck in a few small states
such as Rhode Island and Delaware, and yet
there are only two doors: That would be the front door
and the truck door.
The only time a West Texas man would ever consider
walking is when he’s carrying a high-powered rifle, a
beer cooler and a license to take out Bambi. Occasionally, you will find him hunting birds, but Bambi feeds
more people. Besides, a real man would never mount a
bird’s head in his den.
I was born legally blind, so I’ve always been a walker.
Luckily I enjoy it. Before I moved to the Lone Star
State, I lived for 20 years in Washington DC and New
York City. During my time on the East Coast, I became
accustomed to passing hundreds of people on my daily
strolls. But the first six months I lived in Alpine, TX, I
could walk a mile and back to the city post office without passing a single pedestrian. When I wrote to my
friends in the East, I reported that I had become
Alpine’s best-known streetwalker.
I quickly discovered that in this neck of the woods, a
vehicle is treated with the respect accorded the flag.
When there’s a Yield sign, people take it to mean, “I’ll
yield if you’re bigger than I am,” while Stop stands for
“Spin tires on pavement.” This made me wonder if
pedestrians might get more respect if they had Ford,
Dodge or Chevy stitched across their pants’ seat?
Even if I could see well enough to drive, I’d be no
match for the locals. Here, in the High Chihuahua
Desert, the measure of a man is the size of his pick-up’s
engine. The terrain is rugged and you need a tough vehicle. We have real cowboys herding real cows. However,
it’s not unusual to see a guy get out of a pick-up truck
wearing spurs, when there’s not a horse within 10 miles.
Big matters.
20
ABILITY
If your chin doesn’t touch your knee as you enter the
cab, your truck is a 98-pound weakling. The truck’s bed
size is important as well, because it’s directly proportional to the number of dogs you can carry in the back. I
am particularly attuned to the “doggie equation”
because I discovered that there is something about my
white cane and hounds in the back of a pick-up that
don’t mix. I’ve never had a truck with a dog pass me
that did not act as though I had just insulted its mother.
At first I thought all ranch dogs hated people who
walked. Yet, I have never had one of these dogs bark at
me when it was on the ground. I asked a local why, and
he said, “When they’re in the truck, they think they’re
bigger than you. But when they’re on the ground you’re
bigger and you have the stick.” Good point.
The link between manhood and automotive infatuation
begins early in the West. One day I was told by a 16
year-old that he skipped school because his truck had
broken down, and he would be “humiliated” if he had to
walk eight whole blocks to school. Does anybody really
wonder why we have a petroleum problem?
I have decided that the only way to solve my loneliness
as I stroll from to place to place is to start my own cult.
I will point out to the young of the High Chihuahua that
Jesus walked his entire life, as did his parents. Abraham,
the father of Judaism, Christianity and Islam never
bumped down the back roads in a pick-up, either. And it
has been independently verified that while he was
shooting the film, The Alamo, John Wayne walked all
over the set.
Take that you truckers! And to my fellow pedestrians, I
implore you to hold your heads high.
by George Covington
ABILITY 21
J
onathan Lujan was already nervous when he got off the bus in Snowmass Village,
CO. But as he stood on the snowy mountaintop looking way, way down, his fears
multiplied.
In some ways, it didn’t make sense. Growing up in Littleton, three hours away, he had
been skiing since he was five years old. As an adult he’d shown great courage by serving
twice in the Marine Corps, and had been to hell and back (a k a Iraq). So what was so
scary about skiing downhill, which he’d done at least 1,000 times before?
“My stamina wasn’t as good as it once was,” said Lujan, who also lacks control in his
legs. Although nervous, he was eager to participate in the 22nd annual National Disabled
Veterans Winter Sports Clinic, his first opportunity to hit the slopes since his injury.
In March 2003 Lujan’s convoy took fire in Iraq, causing his vehicle to swerve off the road
and land in a ditch. He suffered a compressed spinal injury, but his stubbornness kept him
from seeking treatment right away.
22
ABILITY
Three weeks later, unable to endure the pain any longer,
he went to a doctor. When the doctors advised him to
consider surgery, he was shipped back to the United
States via Kuwait and Germany. Even then, however,
Lujan wanted to get back to his team in Iraq. “I asked
my doctor what it would take to get me out of there. He
said I had to bend over and touch my toes, so I did it. I
ended up getting back with my unit in Iraq.”
Two years later, Lujan decided to have the operation to
alleviate the discomfort from his injury. “When I woke
up from the surgery,” he recalled, “I was paralyzed from
the waist down.”
Now Lujan has regained feeling up to his knees. He
walks with ankle-foot orthoses, braces that are worn on
the ankle, to keep feet in the correct walking position.
“One thing that really affected me after my injury was
not being able to run because running was a good outlet
for me to relieve stress,” he said. “So when I skied
again, it felt kind of like I was running. It was pretty
amazing.”
Afghanistan.
The Department of Veterans Affairs (VA) and Disabled
American Veterans (DAV) sponsor the event, which gets
additional generous corporate support.
Recreational therapist Sandy Trombetta founded the
clinic in 1986 when he took one veteran on a ski outing.
The clinic mushroomed from there. But it isn’t just
about skiing, or teaching winter sports, or even partying
for a week—although everyone does have a good time.
“When you get out here, you’re surrounded by that
brotherhood and sisterhood of other veterans who are
disabled,” said Robert Reynolds, National Commander
of the Disabled American Veterans. “I think that aids in
the rehabilitation as well.”
Lujan agreed. “I can sit and talk to my counselor or my
therapist, but they don’t know what it was like, he
explained. “It’s good to talk to people who have been
there and done that.”
Someone like Robert Reynolds.
Again.
That’s a word a lot of people use when referring to the
Winter Sports Clinic, a haven for veterans with disabilities who learn or relearn skiing, sled hockey, scuba diving and even shooting. This year’s event hosted 471 veterans from 44 states who are disabled and who served
from World War II up to the current wars in Iraq and
Reynolds injured his spine in an Army parachute accident in 1987, and spent almost two years in and out of
the hospital before being discharged in 1990. Shortly
thereafter, he came to the Winter Sports Clinic.
“Anyone who becomes disabled or undergoes a
catastrophic change in life goes through not only physical
ABILITY 23
changes, but emotional and spiritual changes as well,”
Reynolds said. “How do you help them regain a productive life?”
“You can track individuals and see how their confidence
builds as the week goes along. They leave here really
uplifted and want to come back regularly.”
The Winter Sports Clinic is one answer for many,
including Reynolds. Over the last 15 years, he has been
a participant, volunteer, instructor and now is a supervisor at the Winter Sports Clinic. “I started at my lowest
point, when I was at that crossroads of not knowing
what I was going to do or where I was going to go,” he
said. “It was actually the clinic that rehabilitated me
both physically and emotionally.”
Dennis Best, a Marine Corps veteran and double-above
knee amputee, is back for his 12th year of skiing. “Skiing is my big thing,” Best said. “I’m a mono-skier. The
rest of the stuff is nice, but I usually try to stick to the
mountain as much as I can while I’m here.”
Now Reynolds shows the veterans of all ages how they
can live a quality life. He pushes them to gain the confidence they need to realize their true potential.
As a 19 year-old during the Vietnam War, Best walked
into a booby trap of artillery rounds. Many of his fellow
Marines died in the attack. Although he completed his
rehabilitation at Philadelphia Naval Hospital, he touts
the intrinsic importance of continuing rehabilitation programs such as the Winter Sports Clinic.
Actress Bo Derek, honorary chairperson of the VA’s
National Rehabilitation Special Events, is an enthusiastic
supporter of the full range of rehabilitation programs provided by the Winter Sports Clinic. “Physical therapy is
wonderful, the machines are wonderful, the medicine is
fantastic and I know they’re making progress and achieving miracles all the time,” she said. “But there’s nothing
like this mountain and all the competitive sports and athletics. It’s so much more than just basic medical care.”
He brings his 12-year-old daughter, Annie, with him
to the clinic where she participates in a weeklong ski
program.
For many vets, the mental hurdle of simply navigating
an airport and flying for the first time after an injury is a
journey in and of itself. Indeed, the mental rehabilitation
provided by the clinic, according to Dr. Michael Kussman, Under Secretary of Health for the Veterans Health
Administration, is equally important.
In addition to helping to educate their children, most of
the older vets also do their share of mentoring. “I had
World War II and Korean vets to look up to. The Iraq
veterans look up to us,” Best explained. “I think it’s
important for us older guys to show up at the clinic for
the younger ones. They’ve got a lot to go through.
They’ll get there.”
“Not only do you want people to do as much as they can
physically, but also psychologically. Thinking positively
frees them up to do more and more,” Kussman said.
“I think her education out here for a week far exceeds
what she could have learned in school,” Best said. “She
gets to see other kids whose dads and moms are disabled veterans. It’s important that she knows I’m not the
only one.”
Reynolds encourages this type of support, which fosters
a sense of belonging at one of the most difficult times in
a person’s life. With a clinic that is 400-persons strong,
people feel as if they’re “just part of one big family.”
“You really compete and push yourself to your limit,
and you realize your abilities as opposed to just disabilities,” he adds. “We call it ‘Miracles on a Mountainside.’
The concept being, if I can do this, I can do anything.”
The mountain helps the veterans do just that, Lujan said.
He plans to go back to Littleton and seek out more skiing opportunities once the snow returns later in the year.
In the meantime, he plans to go hunting with a new
friend he met at the sports clinic. He may even take
dance lessons.
“This week has been awesome,” Lujan said. “I don’t
want it to end. It brought a lot of healing.”
by Josh Pate
2008 National Veterans Winter Sports Clinic
www1.va.gov/vetevent/wsc/2008/default.cfm
Disabled American Veterans
www.dav.org
24
ABILITY
U.S. Department of Veterans Affairs
www.va.gov
D
uring Larry Barnett’s 30-plus-year career in
Major League Baseball, he served as an umpire
for four World Series, four All-Star games and
seven American League Championship Series. If you
ask him what his greatest life accomplishment has been,
however, he’ll tell you it’s his association with the Disabled American Veterans (DAV) and those it serves.
“I started volunteering at Veterans Administration hospitals in 1976, and I still visit five of them a month,” he
said. Barnett also gives his time to the National Disabled Veterans Winter Sports Clinic, where he’s a sponsor. The Clinic promotes rehabilitation by instructing
veterans with disabilities in adaptive Alpine and Nordic
skiing, and introducing them to a number of other adaptive recreational activities and sports. Barnett has been
involved with the clinic since its inception 22 years ago,
and attended the most recent one last year in Snowmass
Village, CO, where he showed participants his baseball
cards and his photos from his years in the game.
Rich Tucker has served as a volunteer and a sponsor for
18 years. He first came to see the program as a guest
and then took word of it back to his company, Baxter
Healthcare. “We’ve been a sponsor ever since,” Tucker
said. “There’s only so much an individual can do in life.
You can’t be all things to all people. So you have to
choose something. I chose this because it’s probably the
most gratifying thing I could ever do.”
“And believe me,” his volunteer buddy Barnett added,
“if you can’t get excited about being around these
young and old heroes, then you can’t get excited period.
I had a great career in baseball—37-and-a-half years. I
have a great family. My association with the Disabled
American Veterans is probably the most important thing
I have done in my life.”
According to Tucker, the Winter Sports Clinic experience begins from the moment the vets get off the bus
and turn their eyes to the snow-covered mountain, laced
with instructors and loaded with challenges.
Many of the people he visits there recognize him from TV.
“I went into a patient’s room. He was like 77 years old,”
Barnett said of a man in an Alabama VA hospital. “He
found out who I was and said, ‘Would you just please sit
and talk to me? I’ve enjoyed baseball more than anything in my life. Now that I’ve met you, I’m ready to go
to my maker.’ Talk about powerful stuff!”
Barnett hears these kinds of stories all the time. He is
the only person who has been to all 172 VA hospitals in
the country, according to a spokesman for the Winter
Sports Clinic. Barnett estimates he has tallied more than
3,000 visits.
“By Friday, those new participants are either in a sit-ski,
standing on skis or assisted if they’re blind,” Tucker
said. “They have grins on their faces as they come down
the mountain that you can’t imagine.”
Each year, after a week at the Winter Sports Clinic, Tucker returns to work at Baxter to questions from his work
mates: Where’s the DVD? Did you bring the DVD today?
“I was at the first one down at Grand Junction, and I
think we had two or three sponsors at the time,” Barnett
said of the inception of the Winter Sports Clinic. “Now
we have 77 sponsors along with the DAV and the Veterans Administration. They change these people’s lives,
and it makes an impact on our lives. For 11 months, I
visit 55 hospitals and then I’m out here for a week.”
The Disabled American Veterans produces a promotional DVD that features highlights of the Winter Sports
Clinic. The disc shows participants in each of the clinic
activities, from rock climbing classes and self-defense
courses to snowmobiling and, of course, skiing.
A week that’s difficult for him to describe.
That DVD is a hot little item, and Tucker carries it with
him everywhere he goes.
by Josh Pate
“You’ve got to come out here and see this. It’s contagious, believe me,” Barnett said of his experience
watching veterans learn how to overcome physical challenges, many for the first time since their injuries.
26
They step outside, look up and shake their heads at the
intimidating slopes. Fortunately, previous clinic participants help to ease the fears by telling the newbies:
‘Before the week is over, you’re going to be skiing
down that mountain.’
ABILITY
Josh Pate works for Turner Sports. He’s covered NASCAR and collegiate athletics, and has written features on sport and disability, the Paralympic Games and veteran rehabilitation. He lives in Atlanta with his wife
and son.
ABILITY 27
28
ABILITY
F
or decades, few physicians acknowledged
fibromyalgia as a bona fide disease. Though the
term was first used 20 years ago, it is still a condition about which relatively little is known and for which
there is imperfect scientific support.
The history of fibromyalgia dates back to around 1900,
when a British physician named Sir William Gowers
used the term “fibrositis” to describe a condition whose
symptoms he believed were due to inflammation within
the muscle fibers. While further study did not support
Gowers’s theory, in 1976 Dr. Philip Hench coined what
is considered to be a more appropriate term: fibromyalgia, which means pain in the muscles.
Generally speaking, pain is the body’s most common
and effective way of communicating that something
may be wrong, or that we are being injured by some
external entity, as when you touch a hot stove. Pain is
also our most frequent complaint to health care
providers, yet we still have a lot to learn about it.
As a pain syndrome, fibromyalgia is one of the newest to
be studied. The FDA has recently allowed Pfizer pharmaceuticals to claim in a television ad that their novel antidepressant drug, Lyrica (pregabalin), is a suitable treatment for it. Since approval of such drug labeling requires
scientific study on human subjects, this lends credence to
the condition as a real, diagnostic entity. Things have
come a long way for patients with fibromyalgia. There is
even a Fibromyalgia for Dummies primer.
Dr. Thomas H. Brannagan III, MD, associate professor
of Clinical Neurology at Cornell University in Ithaca,
NY, recently outlined the current understanding of
fibromyalgia and its treatment in the publication
Applied Neurology.
Using defined diagnostic criteria, the disease is found
mostly to affect women beginning somewhere between
25 and 40 years old. There may be a genetic predisposition to develop fibromyalgia—along with major mood
disorders—among family members. Specific gene
defects have been associated with a reduced tolerance to
painful stimuli, which is a key aspect of fibromyalgia.
Some of the most important data on the condition comes
from functional magnetic resonance imaging (fMRI),
which uses magnetic fields to “map” the brain. These
diagrams show areas that “light up” when an individual
is either performing a task or is subjected to an external
stimulus, and indicate increased brain activity.
One study involved pressure applied to the thumbnail of
16 patients with fibromyalgia at the same time that they
were undergoing an fMRI of their brain. The same was
done to a control group of 16 persons who did not have
fibromyalgia. Distinct brain activity in the region that
ABILITY 29
detects pain was noted in the fibromyalgia patients, but
not in the control group.
Depression, fatigue, irritable bowel syndrome,
headaches and insomnia are also commonly associated
with fibromyalgia. It is widely accepted that psychosocial factors, such as physical and emotional stress, can
add to an individual’s experience of discomfort.
Though some might discount the feelings of one with
fibromyalgia and dismiss the pain as being “all in one’s
head,” the truth is that all pain is in our heads because
our brains are where we register the sensation of pain.
The first step toward effective treatment of any illness is
an accurate diagnosis. But pinpointing this condition
can be difficult because the disease is unfamiliar or
unacknowledged by many health care providers. That’s
because symptoms are vague and vary greatly from one
individual to the next. Moreover, the pattern of pain
does not fit our highly advanced understanding of
human anatomy or physiology.
In truth, vague symptoms are a defining criteria of
fibromyalgia. The pain is diffuse and often involves the
neck, shoulders, back, hands, knees and hips, or several
of these areas at once. To be diagnosed with fibromyalgia, according to the American College of Rheumatology,
which studies inflammatory disorders, a patient must be
experiencing pain on both sides of the body, above and
below the waist. The pain must be chronic and/or ongoing for more than three months. A knowledgeable examiner should be able to identify at least 11 of 18 established
“tender points” on various areas of the body.
There is also the challenge of cyclical reasoning: Do the
symptoms define the disease or does the disease define the
symptoms? Either way, avoid diagnosing yourself and
seek out a practitioner who is familiar with current medical literature on the topic and is knowledgeable about the
disorder, as there are no definitive diagnostic tests.
Even if one doctor has given you a positive diagnosis,
get a second opinion, since fibromyalgia mimics
rheumatoid arthritis, polymyalgia rheumatica, Lyme disease, systemic lupus erythematosis, inflammatory
myopathy, polyneuropathy, hypothyroidism, degenerative arthritis and irritable bowel syndrome.
Highly-effective treatment for fibromyalgia remains elusive. Cognitive-behavior therapy may help, as may
physician-supervised courses of anti-depressant medications. Selective serotonin re-uptake inhibitors (SSRIs)
have gained greatly in popularity in recent years. They
seem to be more effective for most patients and have
few bothersome side effects. The granddaddy of these is
Prozac (fluoxetine), which has been proven effective in
the treatment of fibromyalgia. The combination of a
common tricyclic antidepressant, Amytriptyline, used in
combination with Prozac, may even be better than each
drug taken separately.
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ABILITY
Another new category of anti-depressants proven
effective in this regard is the serotonin-norepinephrine
re-uptake inhibitors (SNRI’s). The flagship of these is
Cymbalta (duloxetine), a medication approved for
treating major depression—or neuropathic pain—associated with diabetic neuropathy and generalized anxiety disorder.
Cymbalta was found to improve the symptoms of
fibromyalgia in a large, controlled study. While about a
third of the subjects also suffered from major depression, the positive effect of the drug also occurred in a
majority of subjects without major depression.
Lastly, Lyrica, the only medication approved by the
FDA for the treatment of fibromyalgia, has apparently
performed well in large, human trials. This does not
necessarily mean that it is better than other medications,
only that it is better than a placebo, as it was not compared to other drugs.
If one medication or a combination of them seems ineffective after a period of time, another medication or
combination should be considered. This requires careful
attention and supervision from a physician knowledgeable in managing the pain associated with fibromyalgia.
Some therapies are best avoided because of potential
negative side effects. These may include narcotic analgesics and anti-inflammatory steroids. If a potent pain
reliever seems vital to a fibromyalgia patient’s treatment, Ultram (tramadol) may prove helpful.
Alternative therapies are worth a try as well. These may
include acupuncture or acupressure. Herbal remedies
without some scientific support or a reliable track record
should be suspect until proven otherwise. If you do
choose to use herbs, make sure you are not taking dangerous quantities of potentially harmful substances.
One treatment that has been commonly used, but
remains scientifically unproven is trigger-point injections. A physician who offers these can be assumed to
have as good an understanding of fibromyalgia as anyone. An aerobic exercise regimen is also recommended.
The good news is that fibromyalgia does not typically
progress. In fact, a significant number of patients actually get better after a couple of years.
In our next installment of this series, we will discuss
neuropathic pain, which refers to the chronic, atypical
variety—in other words pain that is not directly correlated to broken bone, burn or other obvious stimulus.
Until next time, keep well.
by Thomas Chappell, MD
Fellow of the American College of Surgeons FACS; Certified American
Board of Neurological Surgery; Dr. Chappell specializes in minimally
invasive neurosurgery, spine and cranial surgery
ABILITY 31
Highness Sheikha Mozah Bint Nasser Bin Abdullah Al-Missned; Aqua therapy—healthy fun in the Safallah Center; Chairman Hassan Ali Bin Ali;
E
ven as I sat buckled in and prepared to take off
for Qatar, my itinerary remained up in the air. I
was headed for this year’s international conference sponsored by the Shafallah Center for Children
with Special Needs. I figured while I was in the neighborhood, I’d see a bit more of the Middle East as well.
More on that later…
Her Highness Sheikha Mozah Bint Nasser Bin Abdullah
Al-Missned created the Shafallah Center. The nonprofit,
private facility offers diagnosis, evaluation, training and
developmental services to youth from 3 to 21 by a highly trained team of specialists. They have expertise in
rehabilitation, child and adolescent psychiatry, music
therapy and so much more.
The topic of the center’s Third Annual International
Forum was Sport and Ability, which included discussions and demonstrations of how sport, recreation and
cultural activities promote global unity.
A few notable attendees were Sir Philip Craven, president
of the international Paralympic Committee; Ade Adepitian, Paralymic athlete and BBC broadcaster; Jill Van den
Brule, UNESCO; Vivian Fernandez de Torrijos, First
Lady of Panama; Dr. Liri Berisha, wife of the Prime Minister of Bularia; Victor Pineda, filmmaker and advocate;
Alice Elliott, filmmaker; Sarah Reinertsen, athlete and
spokesperson for Nike, Challenged Athletes and Ossur;
Marcie Roth, executive director of the National Spinal
Cord Injury Association; Anthony Kennedy-Shriver,
founder Best Buddies; Greg Smith, speaker and coach;
Soula Antoniou, executive director of VSA arts; and Dr.
Rosemary Kayess, Australian delegate.
Suzanne Wright, co-founder of Autism Speaks, and her
husband, Bob Wright, chairman of NBC Universal, also
participated, unveiling a new partnership between their
organization and Shafallah Center. The shared goal is to
foster global awareness of autism and speed the pace of
research on the condition.
I got a chance to trade a few words with Cherie Blair,
Britain’s former first lady. As co-chair of the Shafallah
forum, she was excited about her nonprofit sports program called Scope. Their new project is Time To Get
Equal; its aim is to involve one million British people
with disabilities in sports. It was clear that she was
deeply committed and highly passionate about the new
undertaking.
“Shafallah” is the Arabic name for the flower of the
caper plant, which is native to the Mediterranean and
Qatar. Capers are pink and white flowers with immature, unopened buds. As with its namesake flower, the
center attempts to cultivate the beauty of its children
and encourage their growth and development.
Capital city Doha is in the running for the 2016
Olympic games and boasts a sparkling jewel in its
Aspire Stadium. I got an impressive tour by the general
manager. The facility is the largest multipurpose indoor
sports dome in the world. Designed by the famous
French architect Roger Taillibert, it opened in 2005. Part
of Sport City, Aspire houses an indoor athletic stadium,
a 6,000-seat football arena, Olympic-sized swimming
and diving pools, and seven multipurpose sports halls.
Aspire hosted the 2006 Asian Games.
This year, I was able to get back to the Al Jazeera Film
Festival, where most of the movies dealt with the complexities of life in the Middle East. I also enjoyed a tour
of the bay in a dhow (wooden boat), and went shopping
at the local souqs (sprawling outdoor markets). While
the international buffet was spectacular and plentiful
again this year, it was the Middle Eastern dishes that
Bob and Suzanne Wright of Autism Speaks; It’s up, up, up with the building in Doha; A Shafallah student enjoy’s play therapy;
32
ABILITY
Doha Corniche; “Democracy in the Middle East” conference with Dr. Khalid Bin Jabor Al-Thani; The Pearl; Less stress and a little rest at Shafallah
won me over: the hummus, the fresh salads, grains and
warm breads.
email, and I had plans to interview them about a project
they were doing called Step of Mind (See page 34).
As the conference ended, my travel plans firmed up: I
would head on to Amman, Jordan en route to Tel Aviv,
Israel. One of the many fascinating people that I met
during the event was Hussein Abu al-Ruz, PhD. He’s
secretary general of the ministry of social development
in Jordan.
One thing I noticed right away on the streets of Tel Aviv
were collage-age kids walking around with automatic
weapons. In Israel, every young person must serve in
the army, which is what they were doing. Yet it didn’t
feel like a military zone.
It turned out that we were leaving Qatar airport on the
same plane to Amman. When I mentioned that I had a
12-hour layover, he told me to meet him at baggage
claim. There his car and driver threw my luggage in the
boot a k a trunk, and we rode to his house. Once there,
he got out and instructed his driver to take me around
and show me some of the highlights of Jordan. After
that, he was to bring me back so I could meet the secretary general’s family.
Though the driver spoke no English, somehow we communicated. He took me to Roman ruins, through little
towns and villages and on to a lookout point over a valley with a view of a body of water. Since I speak no Arabic, there wasn’t any point in asking him which body of
water it was, rather we silently enjoyed the vista.
Back at the house, the secretary general’s 8- and 12year-old sons were excited to speak with a person from
the United States. They chattered happily about different American movies and music they liked. Apparently
American culture is very prominent there. Later, on the
way to the airport, the boys hopped in the backseat
behind me and the driver. The 12 year old wanted to be
an actor and was interested in the fact that I’m with a
magazine that features celebrities. I think he was trying
to make sure that if he ever came to America, in pursuit
of the big screen, he would have a place to stay. (Mi
Casa Su Casa)
In Tel Aviv, Simona Bar-Haim and Jacob Witkowski
met me at the airport. We had been communicating via
I did visited touristy places: the spot where it’s believed
that Christ was laid to rest, the Wailing Wall and the
Dead Sea, which is the lowest place on the planet. Near
the sea is a source of a black, healing mud that people
from all over the world come to get so they can smear it
on their bodies.
I couldn’t figure out people were getting it, so I just
starting digging. That’s when a guy saw me and pointed
to a hole in the side of a cliff. I stuck my arm inside and
scraped the interior wall; it had an unusual clayish, soft
and moist texture, even though the area around it was
dry, dry, dry, not to mention hot. For thousands of years
people presumably have been scraping at these same
cave walls, and yet there was still plenty of mud.
In Jerusalem, people from the Princess Basma Centre
for Disabled Children gave me a tour of their facilities.
In a surprisingly close relationship between Israelis and
Palestinians, their joint findings are benefiting the parents and children from both sides.
As I prepared to head home, I had a chance encounter at
the Tel Aviv airport, with Natalie Wooller of Mercy
Corps. I’d been trying to arrange to meet with someone
in her Iraq office as part of my trip. Recently, Mercy
Corps helped create the Iraqi Alliance of Disability
Organizations (IADO). For weeks I’m emailing them
and not quite connecting, and serendipitously, at the
next airport in Amman, I run into Sarah Ferris, Mercy
Corps’s region director for the Arab States. What are the
chances?
by Chet Cooper
Award winning Qatar Airways; A young Shafallah student learns with recreation technics; Getting to know you, camels connect.
ABILITY 33
34
ABILITY
W
hile random, chaotic acts of violence in the
Middle East often trigger fear, some scientists,
healthcare advocates and businesses in that
region are teaming up to actually embrace chaos and
randomness in a clinical setting. Their work may aid
those with cerebral palsy, brain damage, the aftereffects
of stroke, as well as the elderly whose loss of balance
can lead to injurious falls. The Israeli firm, Step of
Mind, is one such company with plans to develop a line
of products for improving motor behaviors based on the
implementation of chaos theory.
ABILITY editor-in-chief Chet Cooper recently visited
the organization in their Tel Aviv offices, meeting up
with Dr. Simona Bar-Haim, the scientific director, and
Jacob Witkowski, the Chief Executive Officer. They
talked about their work and the healing products they
seek to bring to market. Together, the three made a trip
to Jerusalem’s Princess Basma Centre, which serves the
Palestinian population, to speak with Bar-Haim’s peer
researchers and see their work first hand.
Chet Cooper: How did you come up with the idea of
using chaos theory?
Bar-Haim: It started as part of my master’s degree project, when I met a scientist from one of the cosmonaut
programs in Russia. He was a new immigrant in Israel.
By the beginning of the ‘90s, when the communist
regime was finished, many new Jews who came here
from Russia were scientists. I was studying walk physiology, when I learned that he worked with the idea of
chaos theory as well.
My master’s topic was the rehabilitation of movement
disorders. The ex-cosmonaut scientist and I started to
talk and he became my mentor. I studied physics and
specifically chaos theory as it affected systems in
nature, including thermodynamics, river turbulence and
acclimation.
Cooper: Acclimation?
Bar-Haim: These are examples in nature where systems
work in a chaotic way or in a non-deterministic chaos.
As I continued my research, more and more institutes
and scientists found that chaos theory exists in some systems in the human body, such as heart rate variability or
non-linear brain functioning. The first step was to determine how to measure this.
These days it’s recognized all over the world that you
can measure functions of the heart and brain in a non-linear way and find characteristics, data and important
clues that you cannot find with conventional analysis.
L to R: Step of Mind’s Mark Belokopytov, PhD,
Jacob Witkowski, and Simona Bar-Haim, PhD
and entropy, which can show if your heart or your brain
is working in a chaotic or variable way or is working in
a deterministic way. This is the opposite of what is
widely believed today in conventional medicine: That
order is healthy and disorder is pathology. Today we
know that there are disorders, which you can measure
with fractal analysis, that will show that your heart is
working in a variable way, and yet is still healthy.
Cooper: So you’re saying that the heart should be working in a variable way?
Bar-Haim: If you are healthy and young, your heart is
variable. There are heart rate monitor watches that are
best for measuring heart rate when you are walking or
participating in various sports. These are special devices
that can measure your heart beat by beat. The mean
average may be 80 beats per minute, but if you are measuring bit by bit, and you are healthy and young, it may
be 79, 78, 77. It will vary.
Cooper: But within a parameter of order?
Bar-Haim: If suddenly it fell from 80 to 60, that would
be dangerous. But this small variability–
Cooper: I guess I’m having a problem with the word
“disorder,” in that we consider disorder being ill.
Bar-Haim: Pathology.
Cooper: But you’re actually saying that, to a degree,
disorder is perfectly healthy?
Bar-Haim: Right. This degree has two characteristics:
One is very delicate changes, not drastic ones, which are
dangerous. Delicate changes mean your heart has
degrees of freedom to adapt to the environment. This
adaptation can be to temperature, to climate, to your
emotions, physical activity, etc. As you age or face illness, then this variability, this delicate variability is
reduced, and if it’s reduced you can’t adapt as well.
Cooper: How do you measure these functions?
Bar-Haim: You need to use non-linear or non-deterministic equations, such as fractal analysis, approximation
It’s the same story, almost, with the way our brains function. They also operate in a chaotic and variable way,
meaning they have degrees of freedom. One example is
ABILITY 35
the way you reach for a cup of coffee; there are 20 ways
to do it. You could drink it like this or like that. Take it
up with your left hand or your right. Basically, your
motor functions have freedom in the way they perform
tasks. If this cup suddenly became very heavy, I could
choose another strategy for how I would pick it up. So
chaotic is not the chaos of the Bible; it’s something you
can measure by equations that are acceptable and known.
If you have brain damage, you may lose this adaptability,
this variability, this chaotic way of functioning, and can
pick up a cup in only one way. For example, someone
with hemiplegia will do it only one way. Maybe he will
succeed in some way to drink his coffee, but if the shape
of the cup changes, or the distance between him and the
cup grows or is shortened, he will not be able adapt.
Cooper: Was this information that came out of your
research?
Bar-Haim: Actually this information has been known
for about 30 years. What’s novel is the way Step of
Mind is using it. We think we can apply this knowledge
to develop training and systems to help persons with
movement disorders when there’s brain damage.
We say, if the brain is working in a chaotic way when a
person is healthy, then you should challenge him in a
chaotic way in training to bring him back to this healthy
chaotic brain. And it’s again very opposite to conventional therapy, which tries to “correct.” If you are doing
an abnormal movement, and you know how the normal
movement is done, therapists will try to make it as normal as possible. But when the brain finds its own solutions, the restored function is optimal.
Cooper: Why do physical therapists go for what could
be called a more robotic approach?
Bar-Haim: In the therapeutic environment, a person
working with disabilities, especially with motor disabilities, tries to make them look and function like us,
because our eyes are used to seeing typical motions,
movements and reactions that we perceive to be aesthetic. But this doesn’t mean that it’s optimal for that person.
Their brain may find ways to function in the environment that will be better and efficient for them, but not
aesthetically pleasing to our eyes. They may not move as
they used to and that’s okay for them.
If the brain finds its own ways to function in a clinic,
then these skills can be transferred to the supermarket,
the garden, the home and the broader community. But if
a person with brain damage is just trained to do what
looks normal in the clinic, we know he or she will have
a more difficult time transferring these achievements
into everyday life.
For example, if you are retraining someone how to sit
and stand from a special bench in the clinic, it doesn’t
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ABILITY
mean that they will come to a chair in a bar or a restaurant and know how to sit in that chair.
Cooper: That’s why they need to bring the bench with
them.
Bar-Haim: (laughs) That’s one way to do it.
Cooper: In the case of a person who’s had a stroke,
what benefits does your approach offer?
Dr. Simona Bar-Haim: There are situations where spasticity and brain damage lead to severe contraction of the
hand, for instance. You can’t get effective movement
out of it, meaning the muscles, ligaments and fascia are
so contracted that the only solution is to operate, and we
can’t help this person. But if you have a movement disorder of the upper extremity, and you have some passive
range of motion, it is called a dynamic contracture. This
may be a situation where you can increase the function by
applying variability of training on this upper extremity.
The three situations are stiff contracture, where the only
solution before training is an operation; dynamic contracture, where it is only spasticity and you can help
through activity and training; and a mean position
between the two, where there is a dynamic contracture,
but it’s already going into a stiff contracture. In the latter case, you have to apply some other kinds of treatment, such as passive movement and stretching.
Cooper: So what results might you see in someone
whose fingers are curled, will the fingers be flexible?
Bar-Haim: It’s not only assisting with that. It’s bigger
than that. You have a major study being conducted in
the U.S., and now branching out to the rest of the world.
It’s called constrained induced therapy, meaning that for
a period of some weeks you constrain the function of
your healthy hand, and thereby force the brain to use the
parts that have been affected by a stroke. We’ve seen
some very good results with this.
Our goals with this are transfer and retention. We
intend to transfer the training from the clinic to the
outside world, into a real environment. With retention,
you keep the results for a longer time period, even
when the training has stopped.
Cooper: When I was in the lab, you had equipment with
variable engines for use on the arms and legs. Was that
what was used in the trial you’re talking about?
Bar-Haim: Yes. We are calling it proof of concept, as we
are proving the theory. The first stage was my Ph.D. This
was done on the cycling station that you tried in my laboratory. Meaning children with cerebral palsy sat there
for 10 minutes, and their lower and upper extremities,
legs and hands, were moved in a passive, unpredictable,
random way. They didn’t know where it would go by
Cooper: You just mentioned brain damage.
Bar-Haim: Children with cerebral palsy also have brain
damage. But head trauma will be in the next trial,
where we are going to Basma Centre in Jerusalem to
conduct another study with children and adults. [The
Princess Basma Centre provides educational and rehabilitation services to children with disabilities] We will
include participants with brain trauma, hemiplegia and
cerebral palsy.
Cooper: How many people will the first study include?
Bar-Haim: Between 15 and 20 who have movement disorders, and 10 with typical development. When you are
introducing new technology, you have to first try it on
typically developed individuals with no movement disorders, and then try it on the other population. The program we have in Europe, funded by the European
Union, will be 80 elderly “fallers” in four countries:
Switzerland, Slovakia, Italy and Israel. This will be a
special system adapted to a population that either has a
fear of falling or has a problem with it. We’ll complete
this study in 2009.
Dr. Simona Bar-Haim and the “cycling station”
direction, speed or frequency, which relaxed their motor
control abilities. I disconnected their motor controller
from their use in the pathology of predicted walking.
The second proof of concept was done in a Middle East
research cooperation study funded by the United States
Agency for International Development (USAID), in
cooperation with the United Cerebral Palsy Research
and Educational Foundation. In this study, I instructed
physiotherapists on how to use these methods. Once
again, it was training that involved chaos and randomness: The child didn’t know how his training program
would start or end. We used all kinds of strategies and
we proved that with this kind of training, achievements
last for a longer period, for more than half a year outside
the clinic, in the community and in outdoor activities.
Later, parents in Amman, Jordan, or in Palestinian villages reported that their children could function outside
their home and schools. They went on to play football
with friends outside.
Cooper: They actually started playing football?
Bar-Haim: Yes. Not all of them; it depended on their
starting point in terms of brain damage. If it was greater,
your chances were less and, of course, vice versa.
Cooper: How do you recruit “fallers”?
Bar-Haim: There are inclusion and exclusion criteria
when you are planning a study. The inclusion will be
persons who are 65 years old and above, with no brain
damage, and a history of two falls within the last six
months. We’ll have other criteria, like we won’t take
persons with Alzheimer’s.
Cooper: How did you connect with the Palestinians?
Bar-Haim: This is a very nice story. It started with the
peace process with Jordan in 1997. I was asked by our
State Department, because I’m quite known in Israel’s
research circles, if I would go to Jordan to teach physiotherapists. I immediately said yes, because it is in keeping
with my hope for the peace process in the Middle East.
So I went to Amman to teach and study data analysis.
This project was funded by Princess Raad Majda,
cousin of King Hussein (the father). She’s a wonderful
lady, and she’s the patron of all the rehabilitation centers
for children and adults with movement disorders.
The American State Department is also funding studies
between Israel and Arab countries. It was an agreement
done at Camp David between Israel’s late President
Yitzhak Rabin and one of your presidents.
Cooper: That far back?
Cooper: The clinical trial involved children with head
trauma?
Bar-Haim: Cerebral palsy.
Bar-Haim: Most of the money for these U.S.-funded
studies is earmarked for agriculture and water preservation. We were the first, to my knowledge, to apply for
funding in rehabilitation. So I was calling Princess Raad
ABILITY 37
Majda to ask her if she could find somebody to cooperate with me in Amman, and she found me a physiotherapist. The two of us decided to develop a consortium,
including Palestine, Jordan, and Israel, and then we
applied for this fund and received almost $500,000.
We conducted a study in the Middle East and received
scientific advice from the United Cerebral Palsy
Research Foundation. The best persons in the U.S. in
this area are serving as our advisory board. Now I’m
asked to go all over Palestine to teach. We have a
good relationship.
Our final clinical studies which begin in June will take
three months, and then we’ll have nine months to vet
the product, package it, get all the licenses, Food and
Drug Administration approval, etc.
We intend to go first to the American market and then to
Europe. It’s interesting, we’ve already started to line up
distributors in Europe, and we are in the beginning of a
negotiation with one supplier who is in charge of the
Scandinavian market.
Cooper: What study did you say you were going to do in
June?
Cooper: When did you meet that particular group?
Bar-Haim: When I taught at the Princess Basma Centre.
It serves the Palestinian population, although it’s located
in Israel. By definition now, East Jerusalem is Jerusalem,
so what is good about this group is that they cooperate
with the Israeli government and the Jerusalem municipality, but they also serve the children in Palestine.
Cooper: Tell me how Step of Mind started and your
vision for the future?
Jacob Witkowski: I met Simona through a friend who is
the manager of a hospital. He came to me and said that
there are two scientists with an excellent idea, and they
need somebody to help them implement it in the real
world. One of the scientists was Simona. After I met
with her and Mark Belokopytov, our third partner, two
or three times, I was impressed and knew we needed
seed money. So I partnered with them to establish a
company called Step of Mind, and I contributed seed
money, because I believed that this project would be
good for humanity.
Bar-Haim: We’re conducting a disability
study on special shoes
we created. The sensors
in them give us a lot of
data on kinematics,
which means velocity,
symmetry of walking
and the variability of
walking. The other
thing is that we’re using
conventional tests
which are varied and reliable, and other tests that are
known and valid.
Cooper: Where do you perceive this being manufactured?
Witkowski: We don’t know as yet. We are open to suggestions. It depends on demand. The other thing is
financial leverage.
Cooper: There may be money available from USAID. In
Palestine, for example, they need work.
When you retire—as I have from
accounting—you change your outlook
and want to do something to help the
community, while expressing your personal vision. It’s the third phase of life.
Today, I work harder than I used to in
my professional capacity.
When we started out, I wanted to make
sure the idea was patent protected, so we
applied for five patents in the U.S. and in
Europe. We believe our company can
serve all kinds of segments of the population, not only ill people or those with
walking (or gait) disorders, but also
healthy populations. This is our vision.
We are simultaneously developing four
products that will be useful to everyone.
What you heard today from Simona is
about one product—our most advanced
one. We believe that the products used in
this system will be available within one
year.
38
ABILITY
A special shoe with censors provides helpful data on speed, symmetry and variability
in walking.
Witkowski: Very good idea. We would love to work
with them.
Bar-Haim: That’s exactly right. There are industrial
areas where we can give work to Jordanians and Palestinians. My hope is that we will make our products in
the Middle East.
Cooper: Now is the time to do it.
Witkowski: Yes. So that is the first segment. Our second
is elderly fallers. We are working on this project with a
European consortium. We believe that this product line
will be available within two-and-a-half years, maybe
three. We’re also working on two other segments of the
population, one dealing with pain in the neck.
Cooper: Tell me about it!
Witkowski: (laughs)
Bar-Haim: We are thinking of a computer-like gadget
that a consumer could put on himself. It should be sexy
and look like a gadget, because it’s for a young population that is sitting many hours in the front of a computer
and starting to have neck pain because of it.
Cooper: Bad posture.
Bar-Haim: Yes. By the same concept, we know that the
muscles are working in—I’m not saying a chaotic way,
but there is one feature of muscle activation that is
called stochatic resonance, meaning that they are working in a non-ordered way. It’s a bit the same as our
chaos theory. It means that if you have activated muscle
fibers, there are some features that are random.
When you are hunched in front of your computer, the
neck pain is called the Cinderella effect, meaning that
muscle fibers that are recruited first are working all the
time and don’t get an opportunity to relax. We would
like to develop a gadget that a person will put on himself, similar to an iPod or telephone, that will work in a
random, “sub-threshold” way, meaning the person will
not feel that something is being done to them, but the
device will relax the muscles.
We have another idea centered around sports. All our
ideas are based on the same theory of inducing stress to
the brain, inducing motor learning, targeting the brain
for problem-solving and coordination.
Witkowski: We believe that within a period of four to
five years, Step of Mind is going to achieve the vision
of applying chaos theory to all kinds of products for all
segments of the population. We believe that the market
is enormous, but we are cautious. Our first goal is to try
to change the attitude in the professional world so that
they understand that our system is not half-baked, and
will be valuable to patients.
We speak at a lot of professional conferences to clinicians all over the world. We are certain that once our
products are tried by leading professionals and our work
is published, then we’ll increase awareness of what we
do and expand the reach of the population we can serve.
Another important factor, commercially, is that our products be affordable. Today, most of the treatment done in
clinics consumes a great deal of time and money, the latter because the equipment is expensive. We are not going
to omit clinicians. They will likely always be needed.
But we are going to save patients time spent in the clinics by having them use our equipment.
Families in the Princess Basma Centre
ABILITY 39
Cooper: It’s great to see that this is an instance where
Israelis and Palestinians are working together.
worked there and focused only on Palestinian children,
I would have a full-time job.
Bar-Haim: There’s a bit of chaos theory involved in the
background of this as well. I think that Maha [Yasmineh, executive director of the Basma Centre] put it
best: She said that clinicians in the Middle East are wise
enough to use the conflict in the situation to upgrade
their professional community, meaning instead of fighting and saying, I’m not cooperating with Israel because
they conquered my land. They said, Okay, this is the
reality. Why shouldn’t we learn, upgrade and staff from
Israel and from Palestine bringing on whomever is
available to help?
Cooper: Do you know if there are statistics that indicate
that there might be more children with disabilities in the
Palestinian population?
The Israelis definitely want to help, and there are those
of us who are willing to cooperate. That has helped
Basma Centre, which is in East Jerusalem become a
center of instructing professional staff. On another level,
they are disseminating knowledge to adult populations
of professionals in the Palestinian villages, outside
Jerusalem, far away from the Centre, and all of them are
learning from this situation. They are smart women.
Cooper: Do you have any anecdotes from the mothers
who get to stay in the facilities with the child. Have you
been able to get any stories of how their lives have
changed, any understanding that there’s this connection
with Israel at the same time?
Bar-Haim: My staff and I went to Basma Centre to
check the children before the study started. I know that
these mothers were saying, Whatever will help my
child. I don’t care what Hamas is thinking. I don’t care
what others are thinking. If the know-how is in Israel,
then I’m going for it. I hear that from many, many
mothers. They are translating it to me from Arabic.
They are asking me to come and see their children. If I
Bar-Haim: Many have married amongst themselves, like
cousins, so you’ll find some genetic diseases that are
more in Palestine, but not cerebral palsy. We don’t know
why. It’s not a genetic disease, but there are some that
are genetic, like mental retardation, because of marriage
within tribes. We have the same stories here in our religious population because very religious orthodox Jews
are not allowed by their rabbis to conduct amniocentesis.
Cooper: Maha described how Palestinians were quick
to learn. For me, the concept of chaos theory came up
again as soon as she said that, because they have been
going through so many variables, with things changing
constantly, they don’t know what’s next…
Bar-Haim: It’s true that their lives are difficult and they
have to adapt to changing circumstances quickly. There
are problems and conflict, but there are good things there.
Cooper: Israel is actually like your machine in the lab.
Witkowski: (laughs) My strong impression from Maha
is that she’s taking the best of two worlds. She found a
bridge between Israeli know-how, working with the
Israeli official offices… and the Palestinian world. Up
until a few years ago, the latter didn’t get as much care
as its Israeli counterpart did. Moving forward in this
realm is, in my mind, the biggest achievement.
At Jerusalem’s Princess Basma Centre for
Disabled Children (l to r): Maha Yasmineh,
deputy director; Ibtisam Namura, chief of
physiotherapy department; and Simona
Bar-Haim toast to healing.
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www.stepofmind.com
ABILITY 41
42
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I
f you asked 100 American football fans to name the most impressive ever to play the game, most would
put Herschel Walker on the short list. A humble young man from Wrightsville, GA, he exploded onto
the scene in 1980, leading the University of Georgia to the national championship and setting a National
Collegiate Athletic Association (NCAA) freshman record for rushing. The recipient of All-American honors during each of his college years, he set 41 school records, 16 Southeastern Conference records and 11
NCAA records. In his junior year, 1982, he won the prestigious Heisman Trophy.
During his professional career, Walker emerged as a dominant talent, earning Most Valuable Player honors
while setting the single-season pro football rushing record (2,411 yards) with the New Jersey Generals of
the short-lived United States Football League. As a member of the Dallas Cowboys in 1987, he led the
NFL in all purpose yards (rushing and receiving), earning All-Pro Honors. He went on to play for the
ABILITY 43
Minnesota Vikings, the Philadelphia Eagles and again
for the Cowboys before retiring in 1997. In 1999, he
was inducted into the Collegiate Football Hall of Fame,
where he was singled out as the second greatest player,
after Red Grange, in college football history.
Despite decades of adulation, this consummate athlete
has found it difficult to savor his success. In his new
book Breaking Free: My Life with Dissociative Identity
Disorder, Walker recently revealed that he has the mental condition also known as multiple personality disorder. Recently, he spoke about his challenges with Gillian
Friedman, MD, a psychiatrist and one of ABILITY
Magazine’s health editors.
Friedman: As a public person, it takes a certain bravery
to tell such a personal story. What feedback have you
received so far?
Walker: The majority of it has been positive. The point
of the book was to help people realize that whether you
have DID (Dissociative Identity Disorder) or any other
type of problem, it’s okay to go out and get help. That’s
the first thing in recovery, to admit you have a problem
and seek help. I’m a Christian. I love my Lord Jesus, but
at the same time, I don’t think God really cares about
my football exploits. What I do think He cares about is
what I can do for someone else. By getting help and
showing others that it’s okay to take care of myself, I’m
helping others.
Friedman: Was there a turning point for you where you
felt strongly: I’ve got to share my story?
Walker: Do you remember that horrible incident on the
news, where some girls filmed themselves fighting
another girl, and people just stood around watching?
When I saw that, I thought: If I’ve got a way to help
someone and I don’t do it, I’m as guilty as those people
standing around watching.
It’s funny, this book was originally just writing that I did
as therapy for myself. I’d written hundreds of pages as a
part of my recovery process. A friend happened to read
some of them and said, “Wow, why don’t you make this
into a book?” I didn’t hesitate because I thought Maybe
I can reach someone. I know that a lot of players’ wives
struggle to figure out what’s going on with their husbands, and I thought maybe this could also help them
encourage their husbands to seek therapy—not necessarily for DID, but for whatever is going on with them.
There are a lot of people struggling with all sorts of
problems—depression, abuse, drugs and alcohol—and
they don’t know where to turn. My feeling is, Let’s not
hide, people. Let’s come out and get help.
Friedman: One of the things you say frequently in the
book is that you have DID, but DID doesn’t define you.
It’s only a part of who you are. So frequently in our culture, when we talk about people with mental conditions,
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we talk about them as if they are their condition. We’ll
say, “He’s a schizophrenic,” but we don’t say of somebody who has high blood pressure, “He’s a hypertensive.” We don’t turn it into a label.
Walker: I believe the human mind is so powerful that if
you tell a kid that he’s bad all the time, he becomes bad.
If somebody says, “You’re DID, you’re DID, you’re
DID,” I become that and I think there’s no way out, no
possibility of getting better.
I now feel that I’ve been blessed with DID, because I
can see the advantages it’s given me at certain points in
my life. At this point, I’ve got an opportunity to do
something good with it by sharing my story with others.
Everyone who thinks DID is bad thinks it because that’s
all they see—on television, in movies. They haven’t had
the chance to see the positive aspects of it.
Friedman: Let’s define dissociation and the specific type
of dissociation called DID. I think your book gives some
of the best layman’s descriptions of these phenomena
that I’ve seen. So if you were to explain it to someone,
what would you say?
Walker: I would say that we wear different hats in different situations. You have a white hat for your home
life. You have a red hat for work. You have a blue hat
for hanging out with your friends. As an athlete, you’ve
got a green hat for competition. But with DID, your hats
get all mixed up, meaning that your hat for competition
has now become your home hat, your home hat has
become your work hat, your work hat has become some
other hat and so on. So now you’re in trouble, because
your family can’t relate to your competition hat, for
example. Plus, you’re feeling out of control and have no
idea what’s going on.
What you have to do is get someone to help you to get
those hats straightened out again. DID is a coping mechanism to help you overcome something. But you don’t
want it to take over your life. Meaning if you’ve been
abused, you don’t want to become the abuser now; you
want to use your strength for good.
Friedman: It sounds as if you’re saying that there are
defenses that you developed unconsciously to help you
get through certain situations, like your game hat: This
is how I deal with what’s going on with me on the playing field or This is how I deal with what’s going on with
me at school. And you didn’t even realize this was going
on …
Walker: Right.
Friedman: Yes, and because it’s unconscious, you’re not
aware of what triggers that mode.
Walker: That’s true.
Photo by Richard Fowlkes
Leaping over a defender
for a touchdown in a game
at Georgia.
Friedman: So sometimes you’re triggered at an inappropriate place. You’re no longer on the football field,
you’re at home with your family, and that warrior side
of your personality takes over, which is not what your
family needs right then.
Walker: Right. On the other hand, you may be at home
with your child, feeling loving, giving him a kiss,
maybe a little emotional... But you don’t want to be soft
out there on the football field. People would think you’d
totally lost your mind!
(laughter)
Friedman: I can imagine. So with dissociation, you’re
cut off in some ways from what’s happening in the here
and now. Parts of your mind remain cut off from other
parts.
Walker: Yes.
Friedman: It’s a more extreme version of compartmentalization, which people do all the time. For example, if
I have a really bad day where I fight with the husband,
the kids act up and I get a flat tire, I can’t take that negativity in with me when I see patients. So I have to tuck
those feelings away somewhere. In dissociation, one
may not just set the emotion aside, he or she may set the
whole experience aside, and the conscious, thinking
memory may not always have access to the details of
what happened.
Walker: You remove yourself totally from it.
Friedman: I’ve noticed that people tend to start dissociating when they’re very young, and they do it because
there’s something going on that is so difficult that they
need something protective to allow them to go about the
business of growing and developing and working on
themselves, even while this horrible thing is going on.
Walker: Right.
Friedman: In your book, you mention that for some people the trauma occurs in the home at the hands of the
very family that’s supposed to be looking out for the
child. Fortunately, you had a loving, supportive family,
but you had a lot of things going on outside that were
unusually difficult.
Walker: Yes. I was extremely overweight as a kid, and I
had a very bad stuttering problem. I really had no
friends, and I got beaten up a lot.
Friedman: It really struck me when you wrote about
being so lonely for connection with other kids, that you
would approach them on the playground and give them
the few coins you’d been able to scrape up, just to talk
to you for a few minutes.
A lot of people underestimate the seriousness and longstanding effects of bullying at school. They think kids
are just being kids. But there are studies that show bullying can be as traumatic as any other form of abuse.
ABILITY 45
Walker: That’s the reason I tell people that sometimes
God’s guardian angel is taking care of you, because otherwise you would go crazy or do something horrible to
yourself.
Friedman: So when it develops, dissociation is a good
thing that allows children to cope. But as the saying
goes, once you’ve got a hammer, everything’s a nail. It’s
such an effective coping mechanism that over time you
tend to apply it even though you don’t know you’re
doing it. When you become an adult, it’s usually no
longer the most effective coping skill for the particular
situation you’re in.
Walker: That’s true.
Photo by Tim Gentry
Friedman: You write about the fact that dissociative
identity disorder is a special type of dissociation, when
certain sides of your personality step in consistently
when you’re under stress to handle things for you. All of
us have different sides to us—a meek side, an angry
side, a peacemaking side, a vengeful side. For people
with DID, when the core personality gets in trouble,
these other sides step in to protect the person.
Walker: Right, your substitute comes in and takes over
when you can’t handle the situation.
Friedman: You described one incident that was particularly disturbing to you, where you couldn’t understand what you were doing. You became so angry at
someone whom you felt was messing with you during a
business deal, that you were on your way to do physical harm to this person. You wrote that there were two
voices arguing inside your head—one saying to kill the
guy, the other trying to talk you out of it. When you
finally stopped yourself, you realized: OK, there’s
something going on here that I don’t understand. This
is too extreme a reaction. As is the case with most people, it took something severe to finally propel you
towards therapy.
Top: Accepting a
trophy at a track meet
Bottom: Running track
for Georgia
And anyone who goes through abuse on a chronic basis
needs some method of coping. Adults can get up and
move somewhere else or switch jobs. But kids can’t do
that. They have to keep going back into the same situation again and again, no matter how bad it is. For you,
dissociation allowed you to continue to achieve without
being so weighed down by all those traumatic experiences, which might have held you back if you’d had to
endure their full impact.
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For someone who has always characterized himself as a
very self-reliant person, what was it like to seek professional help?
Walker: When I first went, it was very difficult. I didn’t
really believe in dissociation. I thought everybody did
the things that I did. Yet I had to admit to myself that
the situation that you referred to was so trivial compared
to the anger that I experienced. I had to come to the
realization that there was this thing, and that it was
affecting me. That was key.
Friedman: How far were you into your treatment before
the idea of dissociation came up?
Walker: A couple of months. My therapist mentioned it,
but didn’t say much more about it. I laughed. But one
thing struck me as unusual: The therapist asked me to
look at some of my writing from the year before, compare it to my writing from a couple of years earlier, and
then compare that to my most recent writing. Now I
love to write, and I write a great deal. So examining my
writing, I could plainly see that in many places the content and style was totally different.
Friedman: Some people discover that when they dissociate they begin to notice other things, like they’ve purchased things that they don’t remember buying. Or other
people will describe to them things they’ve done that
they don’t remember. They become aware that there are
periods of time that are missing for them.
Walker: I had a lot of experiences where I didn’t
remember going certain places. If it weren’t for my exwife telling me about a number of things that I wasn’t
aware of, I probably would have never gotten help.
From my perspective, everything that went wrong was
someone else’s fault. If someone was mad at me, or I
was mad at him, it was his issue. But I trusted and loved
my ex, and she helped me see that I needed help.
Friedman: You wouldn’t remember parts of an evening,
for instance, and then in looking back, you’d draw a different conclusion about what happened?
Walker: Yeah. When there were blank areas, I just
thought: I can’t remember that because I’ve got a terrible memory.
Friedman: When you talk about your therapy with Dr.
Mungadze, you talk about some underlying rules for
DID therapy. One of the first is that you are responsible
for everything that you do at all times, whether you are
aware of it or not. I think this gets at one of the biggest
misunderstandings the public has about DID. Some people think, This is just an excuse for getting away with
things. But you make it clear that therapy for DID indicates exactly the opposite.
Walker: Right. That’s what I call integration. I’m the
captain of the ship. So all the responsibility, all my
men—whatever hat they happen to wear at any given
time—I’m responsible for their behavior. I appreciate all
of them; they’ve done a lot for me. I feel like dissociation helped me be a good football player, helped me go
to the limit. If I welcomed that, then I have to welcome
the bad as well. That’s the reason I say I’m responsible
for it all.
Friedman: That makes sense, given that all the sides of
you share the same person, share the same body, what
affects one affects all. But how do you deal with the
responsibility of knowing that you’re accountable for
what you do, even when you lose time?
Walker: By knowing that I’m human and not a god. I
make mistakes, and I can ask for forgiveness. The good
thing is that once you integrate, the loss of time is not as
great, and sooner or later you stop losing time.
Friedman: Tell me about the integration process.
Walker: It’s about bringing the different personalities
together. Before integration, you have fragments of your
personality that are loose and disconnected. So now you
take those fragments and put them together and you
become whole and stronger. Instead of being the $6 million dollar man, you become the $60 million dollar man.
Friedman: It would seem that integration gives you
more flexibility, too. Dissociation can be an important
coping mechanism early on, but as an adult, DID limits
your flexibility. It can be like handling things on autopilot rather than having a range of choices in how you
respond to a situation.
Walker: That’s right.
Friedman: You’ve done individual therapy for a long
time with Dr. Mungadze, and you’ve also gone through
intensive treatment in such well-respected programs as
the one at Del Amo Hospital in Torrance, CA. What are
some of the most helpful things you’ve learned in therapy that allow you to work with your DID?
Walker: Group therapy was the most helpful. Seeing
that I share the same experiences with other people
helps me feel that I’m not alone, and that this condition is for real. It’s something that many of us are dealing with.
Friedman: Interesting that you point to that sense of
shared experience because one of the themes of your
book is that you’ve consistently felt like an outsider.
Walker: Most people would say that I’m a loner; I do a
lot of things by myself.
Friedman: Before you started therapy, did you have a
sense of how frequently you would switch from one part
of your personality to another? Did it happen several
times a day?
Walker: Back then, I probably did it a lot.
Friedman: Do you think it’s lessened?
Walker: Quite a bit. For example, I used to be afraid to
speak in front of a group of people. Though I did it, I
was detached; whereas now, that speaker is part of me.
I enjoy where I’m at now. Recently someone asked me
if I was worried how the football world would view me
now that everyone knows “big, strong Herschel Walker”
has DID. I said, “It doesn’t matter, because in many
ways I’m better and stronger today than I was back
then.”
ABILITY 47
Friedman: Let me switch gears and ask about “big,
strong Herschel Walker” the football player. In the
book, you give a detailed history of your football career,
and what you were thinking as you went along. You talk
about how you got into athletics as a kid, your victory
season at the Sugar Bowl, your trade from Dallas to
Minnesota and your frustration that you did not quite
get to do what you wanted once you were there.
I’m going to start with the big one—the move from Dallas to Minnesota. If someone in Minnesota says “the
trade,” everyone immediately knows that refers to the
Vikings’ decision to exchange five players and six draft
picks to get you. But then, once you got there, it seemed
you weren’t going to be allowed to make good on the
deal: You just didn’t get the time on the field that you
needed. That must have been an extremely frustrating
situation for you.
Walker: I could have gone against “the trade,” but I
knew Jerry Jones, the owner of the Cowboys, was a
very good businessperson. I think I was thrown into a
situation where I never could have known the outcome.
But the people of Minnesota loved me no matter what.
They accepted me. When I was leaving the game, I
made a statement that I would go back and play in Minnesota if only to give the people an opportunity to see
what I could really do, because I think they deserved
that. The people make NFL football. So I felt I owed
them something. It had nothing to do with the team
itself, because the team got what they wanted from me.
Whatever the coaches asked me to do, I did. But the
fans in Minnesota deserved more.
Friedman: You write about not ever really being able to
understand why, after they traded so much for you, they
didn’t use you more.
Walker: Before I even got there, management and the
coaches were at war. So now management makes another huge, huge trade that the coaches are not aware of,
and I got caught in the middle. The coaches didn’t like
Herschel and
another “34”—
Walter Payton of
the Chicago Bears
it, so they weren’t gonna let me play.
Friedman: So you were a pawn in a war where people
did a lot of cut-off-your-nose-to-spite-your-face kind of
maneuvers.
Walker: Yes, and that’s not the kind of person I am. I
was raised to stick to a bargain. I was a player. I was
paid very, very well to do as I was told. I would love to
have done even more.
Friedman: When you look back on your career, every
step of the way you have a lot to be proud of, but what
are some of the highlights?
Walker: Football-wise, the best part was winning the
national championship when I was at the University of
Georgia that first year. The team stayed together, fought
together, believed in each other. It taught me that if
you’re unified, you can accomplish great things. Years
later, I grew a great deal playing under Coach Tom
Landry because he built men, not just football players.
Friedman: Do you still maintain relationships with
some of the people that you got to know throughout your
career?
Walker: I do. During my freshman year of college,
Frank Ros was a senior and took me on as his “little
brother.” I write about him in the book. He and I talk
almost every week. A lot of the time, I’m with his family or he’s with mine.
Friedman: You wrote that part of the time you were with
the New Jersey Generals, Donald Trump owned the
team.
Walker: Yes, he owned it the second year that I was
there.
Friedman: You said that you learned a lot from him.
What kinds of things?
Walker: His work ethic, his confidence, getting things
done, believing in yourself. I tell people all the time:
“You have to believe in yourself, not to the point that
you’re arrogant or cocky, but you’ve got to believe
when no one else does.”
Friedman: Sometimes it’s important, particularly early
on in your professional career, to have a mentor who
teaches you not to sell yourself short.
Walker: Right. I had some very honest conversations
with Mr. Trump, and he gave me good advice. I’m really glad he became our owner.
Friedman: It seems that you had an effective routine for
yourself during your football years. Did some of your
DID issues begin to surface after you retired?
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Walker: Yes, I was out of football for about four or five
years, when the anger, the loss of time, and other concerns began to come up. Looking back, I guess that the
regimented football schedule kept me preoccupied, so I
didn’t notice those other things as much while I was
playing.
Friedman: Retirement can be a big identity crisis for
anybody. All of us deal with the issues of who we are
and what we’re going to do with ourselves when we
leave something that’s been a big part of our lives.
When you have multiple shades of your personality that
have been in equilibrium because there’s been a common goal, so to speak, they can go out of whack when
there’s no longer a common objective.
Walker: I was fortunate that I had already started a couple of businesses and they were doing well. My biggest
goal in life was not to play football, it was to give a man
a job. I thought if you put a man to work, you give him
self-worth, and that’s what I was more proud of than
anything. The purpose of one of the first companies that
I created was not really to make money, but to employ
people. It paid for itself, and I didn’t have to put any
money in it.
can prepare chicken. Our plants are in Arkansas, but we
have brokers all over the U.S.
Friedman: Did you start with food services and then
branch out to other areas, such as medical services?
Walker: No, I started other companies that I had
someone else run, and then I started the food service
to give my family members and other people from my
hometown better jobs, so they could stay closer to the
community and take care of their families. Helping
others is not just giving people things, it’s giving them
opportunities.
Friedman: What about Herschel’s Famous 34? Is that
another company?
Walker: (laughs) That’s a brand name on some of the
products that we do.
Friedman: Some of the products you make through
Renaissance Man Foods?
Walker: Yes, we have Mama’s Cookin’, Herschel’s
Famous 34, Mama’s Bakin’, among other brand names.
Friedman: That was Renaissance Man Food Services?
Tell me more about that.
Friedman: How much of your time is devoted to your
enterprises? It sounds like you enjoy keeping busy.
Walker: I had Renaissance Man Food Services, Renaissance Man Hospitality and Renaissance Man Medical. It
was a name that someone once called me because I have
so many different interests. The business has grown. I
am probably the largest, minority-owned poultry supplier in the U.S. We’ve serviced Sysco, one of the largest
distributors of foods for commercial use. We sell to all
the U.S. and Canada, and we’ve sold in Europe and to
the military.
Walker: (laughs) I do. Now the company’s grown to a
point that I’ve had to hire someone to run it for me. I
still do appearances and speak a great deal. Currently,
I’m talking to Mark Burnett, the guru behind reality TV.
I have an idea for a show that he and I are discussing, so
you may see that in the future.
Friedman: You really are a Renaissance Man!
Walker: (laughs)
Friedman: So it’s a company that processes poultry?
Walker: Yes, we precook, we fry—any way that you
Friedman: I really enjoyed what you wrote about defying the “dumb jock” stereotype, because you’ve always
Herschel with family at
older brother Willis’s
wedding in 1985
ABILITY 49
been “booky”—obsessed with reading and learning. I
also loved the story of how, when you first got to college, you walked around looking at the architecture.
When you saw Demosthenian Hall, you knew Demosthenes was a famous Athenian orator who led a rebellion against the Macedonians and was crushed by one
of your childhood heroes, Alexander the Great.
Walker: Aside from Greek mythology, I used to read
about Roman athletes and how they worked out in
Rome. From those stories I created my own workout.
It’s funny, though: People still tend to believe that jocks
are dumb. I have gone to meetings at my own company,
and people would talk to me about football, and
then turn to an employee of mine to talk about
business, assuming that I’m just a figurehead. I
created the business. I can talk about it as well as
anybody. I’m not that unusual; many athletes are
well-read.
Friedman: Your son is around nine or so now?
Walker: He’ll be nine in September. I spend a lot
of time with him. A couple of years ago, I invented a toy for him. Late at night, I think of different
things I might do or create.
My son stays with my ex-wife when I’m out on
the road. I’m still traveling a great deal, because
we have offices all over the country. I get invitations to speak all over the country as well, so I
have an opportunity to meet a lot of people.
Friedman: You’re getting a lot of publicity
around the book. Have you spoken with your son
about it?
Walker: He knows that his father is a public figure, and I tell him: “Your dad is strong, he can do
amazing things, but sometimes he’s weak and
needs to ask for help. A strong man is someone
who admits when he’s wrong, and then stands up
and does what’s right. So if you’re getting
knocked down, get back up and keep going.
Don’t let anyone stop you.” That’s why I know
this book is going to help him; he will be able to
understand that his father had a problem and
faced it head-on.
Friedman: That is one aspect that makes your
story so important: You’ve never been a defeatist.
Psychologists call that trait self-efficacy. It’s a
feeling that you have the capability to come up
with a solution. That trait is perhaps the single
most-important predictor of who will eventually
find a good outcome.
Herschel running
for the University
of Georgia as a
freshman, 1980
Walker: Yes.
Friedman: It seems that’s been a constant for you
throughout your life, that is, you’ve always
responded to whatever is going on around you
with the question: “What can I do about this?”
Walker: When I was being bullied and picked on
and laughed at and all that, I got to a point where
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I said, “Enough is enough. There will be no more.” I’ve
certainly known fear. I mentioned that my dissociation
may have started when I was a very young child, and I
was unusually afraid of the dark. But I know that we
all have strength; we’re all blessed by our Lord Jesus.
I also know that because of Satan having my playbook, he’s always going to try to fool me.
A lot of major decisions in life I made by the flip of a
coin, because I knew my heart was pure and my mind
was pure, so no matter what decision I made, it was
going to turn out all right. For someone out there who
is struggling, I say, “We’re all blessed, so let’s not run
away from our illness. Let’s take it on with a positive
outlook. Let’s flip the switch on it and see what
happens.”
Friedman: You had a lot of support from your family,
which is different from the background of many people
who have dissociative problems. Support from your family makes it a lot easier to grow up with the feeling that
you can handle whatever life throws your way. Do you
think that was part of your family’s ethic?
Walker: Yes. I have seven siblings, and my family’s
my foundation. Some people don’t have the opportunity to build a foundation. A lot of people are not raised
with two parents, for instance. I always say everybody
falls back on their foundation, and for me that foundation was built at home. So when I went outside of my
home, at first I felt like people had shattered that foundation. It took me a while to get it solid again. But
once I did, people outside my family couldn’t touch
me anymore.
Friedman: You write about a lot of prejudice you faced
in school because you stuttered so severely and you had
the weight problem. People made assumptions that you
were not going to amount to much; there was this pervasive “poor downtrodden Herschel” perception. If you’d
had to experience that at school, and then hadn’t had a
supportive family to go back to, it could have been a
very different situation.
Walker: It would have been totally different for me, and
that’s the reason why I’m trying to encourage people
who might be in that situation to realize that they are
worthy, and that they should never let anyone convince
them differently.
Friedman: Coming back more to the present, the
process of figuring out what was going on with your dissociation, starting your food service business, and retiring from your football career was stressful to your marriage. There’s a point in your book where you describe
that even though you and your ex-wife really tried to
work together, you admit, “There were parts of me that
were still so broken, I couldn’t do what was really needed to help her heal the wounds I’d inflicted on her.”
What do you think it was that she needed that you
couldn’t offer at that point?
Walker: She felt that she needed me to be totally there.
She needed me to share what was happening with me,
because that’s the way it had been since we’d met, and I
couldn’t do it. Meanwhile, I felt that I had lost my
friend, because I couldn’t relate to where she was coming from.
Friedman: About some of those differences of opinion,
you wrote: “I was doing my businesses and she wanted
to relax, and I couldn’t understand that. She would go
off to play tennis with her friends, and I felt she was
abandoning me, but she was just living her life.”
Walker: Yeah, she was doing what she always was
doing. It was nothing different. But I had more time on
my hands, and for me it was like, It’s Herschel, Herschel, Herschel. And I felt like, Why aren’t you here
with me?
Friedman: These are typical couple issues when people
make a big change. I’m wondering if maybe the silver
lining of having something going on—like DID—which
moves you into therapy, also gives you an opportunity to
reflect and understand other things about your life.
Walker: It does. It gives you an opportunity to stop for a
moment and reflect on the truth. If I had not gotten help,
I would have always thought it wasn’t my fault, it’s the
other guy’s fault. He’s the bad guy. He just wasted my
time. He didn’t deliver, so he deserved to be hurt.
Friedman: It’s kind of like somebody who develops a
rigorous physical regimen because he finds out he’s had
a minor heart attack. Then he changes his lifestyle and
becomes healthier than before he got sick.
Helping others improve their health seems important to
you. In the 1990s, you were involved with Health
South’s “Go for It” Roadshow. Are you still doing that?
Walker: I did that for about seven years, but it’s not
around anymore. We went to different cities and talked
to kids about staying off drugs, getting an education and
so on. We spoke to more than five million kids.
Friedman: What other activities in your life are really
important to you right now?
Walker: I give a lot of scholarships to kids around the
country. Fifteen percent of all my company profits go to
charity. As a person who was blessed, I think it’s my
responsibility to share the blessing with others.
www.herschelsfamous34.com
www.nami.org
ABILITY 51
A
t the impressionable age of eight, Marvin Laster
became a member of the Boys & Girls Club in
his hometown, Albany, GA. The popular neighborhood hangout gave him a safe haven from the lures
of the streets. With some 4,300 Clubs worldwide, Boys
& Girls Clubs of America (BGCA) makes sure that children who might otherwise be at home after school with
no supervision, have a place to go and something productive to do. Academy-Award-winning actor Denzel
Washington has often given credit to the club in his old
Mount Vernon, NY, neighborhood for keeping him on
the straight and narrow during his youth.
“Much of the success that I have achieved I attribute to
lessons learned within the club,” says Laster, who’s also
enjoyed a life-long relationship with Atlanta-based
BGCA. Though he learned a great deal from the older
staff back in the day, he received perhaps his most valuable ‘take-away’ from a friend named Shawn Luke, who
had a disability. As the two boys played pool and other
games at the club, their differences disappeared.
“He taught me acceptance,” Laster says. Now, as director of diversity for BGCA, he helps to make sure that
message is imparted not only throughout the organization, but also beyond.
To institute its diversity and inclusion program,
BGCA used a “top down/bottom up” approach. From
the bottom up, it created a pilot program by identifying five clubs that had marked success serving youths
with disabilities. These clubs were teamed with local
Easter Seals affiliates, school systems, agencies and
community organizations, so that BGCA staff could
52
ABILITY
get additional training or have a place to refer kids in
need. The program also tracked progress and captured
“best practices.” The pilot sites provided the organization with several unique programming activities for
youth with disabilities as well.
From the top down, BGCA took a step back and
reviewed its mission statement and policies to help
determine how the national office could be more supportive of initiatives to include young people with disabilities. To that end, Laster encouraged local clubs to
sign BGCA’s Diversity Pledge. He wrote articles on the
subject and also encouraged all Clubs to celebrate
National Disability Awareness Month (October).
Laster then sought out alliances with Easter Seals and
several like-minded foundations such as Mitsubishi
Electric America Foundation (MEAF), based in Arlington, VA, to expand the resources and reach of BGCA’s
national-level initiatives. MEAF provides national
grants to projects and organizations that are focused on
the full inclusion of young people with disabilities. It
was serendipitous that they were also looking to team
up with a “mainstream” organization.
“The partnership with BGCA represented the perfect
intersection of mission, need and opportunity,” says
Rayna Aylward, executive director of MEAF. “The right
people at the right time are facing in the right direction.”
Previously, BGCA had formally partnered with Kids
Included Together (KIT), which had an existing relationship with MEAF. KIT is a San Diego, CA, nonprofit
that provides training for after-school organizations
Shawn and Marvin (light blue vest), who
played together as children, still find time
to get in their usual game of pool when
Marvin visits his hometown Boys & Girls
Club in Albany, GA.
ABILITY 53
Clockwise from left: Many lifelong friendships begin “at the club”; The Boys & Girls Club of Carlsbad, CA, was recently honored for furthering
the goals of the Americans with Disabilities Act. Marvin Laster receives the first Inclusion Champion Award from Rayna Aylward of Mitsubishi
Electric America Foundation. Julius Lott, BGCA vice president of diversity, attended the San Diego event to help cheer Laster on.
committed to servicing children with disabilities. Working together, BGCA and KIT developed Embracing
Inclusion: It’s About All of Us, a programming manual
that offers tips, activities and events that clubs can easily implement.
Similar to Laster’s experience with his childhood friend
Shawn, PALS pairs a child who has a disability with a
typically-developing kid at the club to cultivate a
rewarding learning experience and a climate of understanding and acceptance.
“This initiative has led to significant outcomes in the
advancement of the Boys & Girls Club mission,” says
Julius Lott, BGCA’s vice president of diversity.
Making it all work takes money. Mitsubishi Electric
America Foundation has invested $2 million, while its
nonprofit partners have leveraged an additional $4 million towards promoting inclusion. MEAF is now helping to involve other grant makers through the Disability
Funders Network. The presence and reach of such support has allowed KIT and other organizations to broaden
their scope.
Though the formal agreements have expired, BGCA,
MEAF and KIT continue to work together and remain
committed to the vision. Their partnership with other
organizations and agencies has been instrumental in
developing Paths to Inclusion, a resource guide for fully
including youths of all abilities into community life.
This sense of mission is shared by the Boys & Girls
Clubs of Carlsbad, CA, which recently was presented
with an award for furthering the goals of the Americans
with Disabilities Act. The club’s Physical and Learning
Support (PALS) program earned them a $2,000 cash
award and acknowledgment for their contributions from
Prudential Financial as well as from the National Organization on Disability.
54
ABILITY
“It gives KIT so much validity to be working with an
organization that truly affects so many lives across the
country,” says Jan Giacinti the CEO of KIT. “This relationship has put us in a different place.”
These accomplishments would not have been possible
without key individual leadership. To recognize the
work of those who have made a measurable and sustainable impact in promoting the inclusion of youth
with disabilities, MEAF created the Inclusion Champion Award. Earlier this year in San Diego, CA,
The ABILITY House program, working with Habitat for
Humanity, ABILITY Awareness and ABILITY Magazine,
reaches out to volunteers with disabilities to help build accessible
homes for low-income families with disabilities. We are seeking
corporations, foundations and churches to sponsor more homes. We
can build in nearly 100 countries. Please contact us for more information.
[email protected] www.abilityawareness.org
Laster was named its first recipient.
Years ago, when he was just starting out, Laster stayed
in his hometown after high school to work as a juvenile
justice coordinator. He was responsible for implementing Boys & Girls Clubs of Albany’s delinquency prevention and intervention programs. His talents were recognized early on by East Albany unit director Michael
“Skip” Nelson.
“The program Marvin put together [for delinquency prevention] is the one that we still use today,” Nelson says.
Laster eventually left his hometown Boys & Girls Club
to pursue other opportunities at the organization’s
national headquarters, as well as within the Georgia
Department of Human Resources. After completing his
undergraduate degree in political science at Albany
State University, he continued to work on campus to
create youth development and violence prevention programs. But all roads lead home, as they say, and eventually he ended up at BGCA’s national headquarters
where, in 2004, he was hired as the assistant director of
Health and Life Skills.
Laster reflects. “But in a way, it is. We are in a race to
speed up that day when all people, regardless of their
abilities, are fully included in America.”
by Lauren A. Hoffman
Lauren A. Hoffman is a writer and editor for BGCA.
Boys & Girls Clubs of America:
www.bgca.org
Mitsubishi Electric America Foundation:
www.meaf.org
Kids Included Together:
www.kitonline.org
Paths to Inclusion and other resources can be downloaded from
www.includingallkids.org
“I’m reluctant to call this inclusion movement a race,”
ABILITY 55
T
he telecommunications industry has come a long
way. Prior to 1990, when the Americans with Disabilities Act was passed, people with hearing and
speech disabilities faced challenges trying to communicate via telephone. But the ADA paved the way for the
Telecommunications Relay Service (TRS), which got
everybody talking. In recent years Sprint Nextel has
emerged as an industry leader in expanding TRS to
include a vast range of products and services.
ABILITY editor-in-chief Chet Cooper spoke recently
with Mike Ligas, director of Sprint Relay, and Tammy
Edwards, director of Inclusion and Diversity, about the
company’s continuing innovations as well as its commitment to diversity and accessibility in the workplace.
Chet Cooper: First off Tammy, what initiatives do you
have internally for hiring people with disabilities,
accessibility issues within the organization, community
outreach...
Tammy Edwards: Let me give you some background.
We’ve had our formal diversity and inclusion organization in place since 2003. With our employee resource
groups, our community relations department and our
external diversity initiatives, we have a united front on
how we approach the community in regards to sponsorships, as well as to our volunteer programs. In those
areas we marshal large employee populations to work
on the needs expressed in certain communities where
our employees live and work.
So our community outreach takes the form of utilizing
what I call the three T’s: the talents of our employees,
the treasures from the Sprint foundation and our community relations budgets, as well as the time that our
employees spend volunteering to help a variety of organizations around the country.
Cooper: Let’s talk a bit about some of the relay services
you provide.
Ligas: Since shortly after the Americans with Disabilities Act of 1990, we have been providing services for
people who are deaf and hard of hearing and/or speech
disabled. We have contracts with 32 state governments,
the federal government as well as the U.S. territory of
Puerto Rico and New Zealand. We’ve broadened our
service offerings over the years, and now provide video
relay and Internet relay. We’re the largest provider of a
service called CapTel, or Captioned Telephone, which is
designed for people who are hard of hearing.
Cooper: How does CapTel work?
There are two versions of our Captioned Telephone service. We launched the original in 2002 and have been
providing that service to a growing number of people
who are hard of hearing. Sometimes we get email about
it. A person might write and tell us that they hadn’t been
able to talk to their grandchildren in years, and now they
use the telephone like they used to. I love that.
The newest Captioned Telephone service, Web CapTel,
was launched this year. With this version, captions
appear on your computer screen. You have to be a little
more computer-savvy to use it, as opposed to the original version. But this one allows you to make the font
size bigger and/or a different color. It provides a much
more adaptable transcription of the text. You can essentially enhance it so that it is readable for you. You can
use Web CapTel anywhere you can access a computer.
Cooper: Can it be used for international calls?
Ligas: It’s not eligible for international calls.
Cooper: Do you have it in other languages?
Cooper: Do you work with any specific groups?
Edwards: When I was involved in our relay products
like 100 years ago, I know we had programs with Gallaudet University. We not only provided them funding
from the foundation, but we also volunteered there.
That was at the national level. Locally, here in Kansas
where I’m based, we worked with the Kansas School
for the Deaf, and two years ago we partnered with the
Kaboom! Organization to build a playground at the
school for the deaf. Mike, want to jump in with some
recent initiatives?
Mike Ligas: We participate with the National Technical
Institute for the Deaf in Rochester, NY, and also with
California State University at Northridge, where there’s
a large deaf program. We’re involved with the National
Association of the Deaf, Telecommunications for the
Deaf, Association of Late-Deafened Adults and AARP.
We’re involved with so many of these organizations, it
would probably take an hour to list them all.
Ligas: It’s also in Spanish. You know, there was another
point I wanted to make about CapTel: There’s an operator involved, just as with any other relay service, The
difference is that the operator is completely invisible to
the two parties on the call, meaning that you cannot
interact with the operator the way you can if you’re
doing, say, Internet relay or video relay.
The operator for CapTel uses specialized speech-to-textrecognition software. If you and I were having this call
and I was using Captioned Telephone, and you were a
normal hearing person on the other end, you would hear
everything I said, and your end of the call would be perfectly typical. Everything you said, I would hear, but it
would also be cycled through the call center that our
vendor provides us, and an agent would also hear what
you said and revoice your words into a computer specially trained to understand that operator’s voice.
Cooper: Oh, I get it now.
ABILITY 57
Ligas: Speech-to-text-recognition technology works for
what we call speaker-dependent speech to text. So the
agent trains the computer to recognize his or her voice,
which it does with a high degree of accuracy. Of course,
agents have their own log on, and go through extensive
training to match their voice profile with their computer.
One of the things that’s a bit different than a normal call
is that you’re getting two inputs. In the scenario that I
talked about earlier, where you and I are having a conversation and I’m the hard-of-hearing person, I hear
your voice, and then I see your text come across my
screen about three seconds later. I don’t know if you’ve
ever watched a taped program, but say it’s a live event
and you turn both the volume and the captioning on
your TV at the same time, you will notice that the
speech comes across immediately, but the text comes
across after about a two- or three-second delay.
That delay is the processing time that the agent takes to
revoice your words, as well as for the computer to turn
them into text and spit them out on the screen. It takes a
bit of getting used to, but it’s not hard. You kind of slow
down a bit. You hear the words, you look at the screen,
and you can verify that what you heard was correct,
because you can now read. Say, for example, I missed
50 percent of what I heard, I would be able to fill in the
blanks with the text that comes across my screen.
Cooper: Is that text later email-able?
Ligas: On the Web CapTel system, yes. You can save
the conversation, print it, and, I believe, email it.
Cooper: Is the service free?
Ligas: Yes. There are surcharges of a couple of pennies
on everyone’s phone bill in the U.S., which covers the
cost of service for people who have hearing difficulties.
The only charge to the end user is the price of the call.
Cooper: So you’ll get the same cell phone charge, or
land line rate, if that’s what you’re using.
Ligas: That’s correct. You can use a cell phone with
Web CapTel as one of the devices on each end of the
call, but you’re not going to see the captions on a wireless device. You can see the captions only on your computer screen.
Cooper: So at this point, this is all web-based. It’s not
like text messaging?
Ligas: Correct. It’s definitely not text messaging. Quite
frankly, there are some people who are not comfortable
with computers, and that’s where the traditional CapTel
service is a great support mechanism for their communication needs. Almost every state in the country has a
contract for CapTel.
58
ABILITY
Cooper: Tell me about your video relay system?
Ligas: It’s a wonderful product for people who use sign
language, and has been a tremendous equalizer and
communication opportunity. Sprint was the innovator,
along with one of our subcontractors, CSD. In 2002 we
launched the nationwide service for video relay, and the
market has subsequently exploded.
Cooper: Do you have any other services or products?
Ligas: There are a couple of different things. First of all,
we have a wonderful line-up of wireless devices for
people who are hard of hearing. We have been the innovator of wireless plans for the deaf that are data only,
and don’t include any voice minutes.
The second service I’d like to talk about is Relay Conference Captioning. We may be the only provider in the
whole country that offers it. We sell this service to a
couple of state governments, the federal government,
and to a couple of very progressive, disability-friendly
companies such as Hewlett Packard, ESPN and IBM.
It’s a conferencing capability so that people who have
hearing difficulties can participate on conference calls
where it is primarily a one-direction type of service.
For example, our CEO does a quarterly webcast, where
all 55,000 to 60,000 employees dial into a conference
call—or webcast—and view the call. On my team, we
subscribe to the Relay Conference Captioning service
for the people who are primarily deaf or hard of hearing.
They’re able to see the entire transcript of the call come
on their computer screen in real time. So if they have
difficulty getting an interpreter or using one of the other
services, they can still participate. It’s primarily receive
mode. They do have the ability to ask a question or
interact with the speaker in a limited form, but it’s mainly information going out from a central source.
Cooper: On the CapTel that we talked about, you have
to log in to do the one on one? You both are logged in?
Ligas: On the Web CapTel, only one person has to log
in—the initiator of the call. It’s a really cool service and
easy to sign up for. It takes about five minutes or less.
At the end, you get an access code.
Edwards: With our all-employee webcasts, we make
closed captioning available for everyone. So when an
employee signs up to “attend” one, such as the webcast
from our CEO, there’s an option for that employee—
whether he or she is deaf, hard of hearing, or speaks
English as a second language—to get the feature.
Cooper: It seems that other companies should follow
your lead.
Edwards: Well, we work very hard to create an inclusive
culture for all of our employees. We want them to feel
valued and be able to do their best work every day.
Cooper: Do you do any specific outreach to hire people
with disabilities?
Edwards: Yes, through selected websites.
Ligas: Tammy, let me jump in here. I have about 50
people on my team. About 80 percent of them are deaf
and hard of hearing, and whenever we need to hire a
new person, we typically recruit through a professional
network, friends of friends, the National Technical Institute for the Deaf (NTID) or Gallaudet University.
Probably 30 percent of my people have graduated from
NTID, another 30 or so percent from Gallaudet, and
about 10 percent from California State University at
Northridge. So we do focus on recruiting people who
really use our products every day and have a keen
insight into the needs of the community.
We also have a deaf-blind service with a couple of
operators who are blind in our TRS call centers; we
have people specially trained to understand those with
speaking disabilities who handle our speech-to-speech
services.
Edwards: In addition to the people who are deaf and
hard of hearing, we also want to make sure that people
with other disabilities, such as the mobility impaired, for
instance, also feel Sprint is a great place to work. So
with our employment materials, our employment website, as well as our on campus and conference recruiting,
we always make sure that we’re seen as inclusive.
Cooper: Good. Now do the phone systems that you sell
all have accessibility features?
Ligas: I’m not an expert on every device that we sell,
but I believe that we’re certainly within the FCC mandates for our T ratings and M ratings. I think 50 percent
of our phones need to be T rated or M rated. [The higher
the T and M ratings the less likely the hearing aid user
will experience interference while using a cell phone.]
We have a very extensive line-up. It goes from flip
phones to full data PDAs that meet those standards.
Cooper: Any other subjects that you’d like to talk
about?
Ligas: Yes. The new FCC mandate. It essentially
requires providers of Internet and video relay services to
offer a full 911 or an E-911 capability. In the past, pinpointing an Internet user’s exact location for emergency
reasons was difficult. In response to the mandate, we’ve
modified our system. It requires users to provide location information when they use a relay service for the
purposes of dialing 911, if ever needed. So we now can
provide equivalent 911 access to the best of our technical capability. However, you’re probably not going to
Using Web CapTel, a hard-of-hearing
person will see the callers speech-to-text
come across his screen about three seconds later
hear any stories about ‘the dog logged on and saved the
woman’s life’…
Cooper: Because it’ll take the dog a lot longer?
Ligas: (laughter) And he’ll need to hit the keys just
right... The other thing to note is that there is a lot of
discussion amongst leaders in the deaf and hard of hearing community, with support from providers including
Sprint, to have a 10-digit numbering system for Internet
calls and video calls that is similar to the 10-digit phone
system that hearing people have. Because in the past,
you might need to know someone’s IP address to be
able to connect to them through either Internet relay or
video relay. So we’re all working toward a solution that
makes it easier for people to connect, whether you’re
deaf-to-deaf or deaf-to-hearing, by using a 10-digit
numbering system instead of an IP address.
Cooper: Tammy, would you talk a bit more about dealing with disabilities internally?
Edwards: We have an executive inclusion council
chaired by our CEO, Dan Hesse. It’s made up of senior
leaders from each of our business units. It’s a very
inclusive group in just about every way. The obvious
being gender and ethnic diversity; we also have an
employee who has a disability. In this case it happens to
be someone who is mobility impaired and who sits on
the executive inclusion council to provide insight for
members of our Sprint population who are disabled.
Mike has been working with Peter to give us some
insight on how we can perfect captioning for our
employees. Peter works with our real estate organization
on ways that we can improve accessibility within our
stores and offices. So he has been, as well as the other
members of our inclusion council, a great resource for
updating our senior leaders on projects and initiatives
that need attention.
www.SprintRelay.com
www.SprintRelayStore.com
ABILITY 59
W
aking up at 5AM to run five miles is tough,
but getting up at the crack of dawn to train
for a 200-mile charity bike tour is:
Bizarre?
Ambitious?
Exhausting?
Try all of the above.
60
ABILITY
“It is easier for me to ride 100 miles than it is for Max to
walk 100 inches. Until we live in a society where he and
every child with a disability gets the treatment they need
and are not bullied on playgrounds... I will ride.”
But I was motivated by the knowledge that I was helping to transform the lives of children and adults with
disabilities across America.
The two-day, 200-mile bike ride took place in four cities
in three states: San Diego, CA; Raleigh and Charlotte,
NC; and Tampa Bay, FL. United Cerebral Palsy (UCP),
which serves 176,000 children and adults with all types
of disabilities, launched this first-ever Ride Without
Limits.
As with any charity event, the organization faced challenges, including breaking into new markets and seeking to recruit riders with limited affinity for the cause.
While some cyclists, sponsors and volunteers initially
knew little about UCP, after the ride they seemed to
form a lasting connection.
With the help of traditional media advertising and word
of mouth, cyclists and their teams, along with family
and friends, joined together to raise nearly $500,000.
Seventy percent of the money collected will directly
support services and programs provided by UCP affiliates in the markets where the rides were held.
Clay Gandy, 30, wanted to be an inspiration to other
people with disabilities: “Last year, I learned to ride a
bike. This year, I’m striving to push my limits, go the
distance and make a difference for someone else with
CP. Riding has given me the satisfaction of accomplishing that. Until last year, I thought it was impossible. Somewhere out there is another child, young person or adult like me who thinks the possible is impossible. I will try to make a difference for that special
person.”
New to riding, Patricia Blackman became an avid supporter. Her team raised nearly $18,000 for the North
Carolina UCP. As Patricia points out on her Ride Without Limits webpage, “[being a] case manager helping
others, I have seen how tough it is for individuals to get
the help they need.” Being a part of the event was her
chance to make access to essential services easier for
those in need.
In 2008, UCP’s Ride Without Limits will again be held
in North Carolina and Florida, with new markets projected for the 2009 line-up.
Start Training Now.
by Elizabeth Reitz
Elizabeth Reitz is the communications specialist of UCP National.
For more information visit:
Steve Madden, editor-in-chief of Bicycling Magazine,
featured the story in a recent issue. Madden participated
in the Tampa Bay ride, and called it “the best-run, most
rider-friendly charity event I’ve ever participated in.”
www.ridewithoutlimits.org
or call (919) 865-8640 for the North Carolina ride
or (813) 239-1179 x219 for the Tampa Bay ride
Karen Ryals, CEO of Tampa Bay UCP, was amazed at
the outpouring of support for the event: “Though [our]
community has always believed in us and our mission, it
was truly touching to see individuals who had no prior
association with UCP come out and give their all to help
fund our programs and services. I am forever humbled
by the selflessness and graciousness of our community.”
For UCP and its affiliates, nothing was more satisfying
than hearing riders’ personal stories of why they chose
to ride:
Kathy Zonana did it for her three-year-old son, Max,
who has cerebral palsy, and for other children like him.
“I am probably the last person who would train for an
endurance event, especially while holding down a fulltime job and raising two small children. But when UCP
announced the Ride Without Limits, I knew I had to try.
ABILITY 61
62
ABILITY
ACROSS
1. “Disability hero” Pres. according to Bob Dole
3. “The Police Academy” actor Art, who overcame a
severe spinal cord injury
8. “___ Robinson”—Song from “The Graduate”
11. Brew
12. Relaxation noise
13. “The Cryptogram” actor who is a champion of the
environment (2 words)
15. Actress Holly who formed the HollyRod Foundation
to help fight Parkinson’s disease
17. Sally Ride, the first woman in space, was born here
18. Good
20. Actress Fran who successfully battled cancer
25. Getting out and about
26. 70’s rock group, abbr.
27. Legal eagle org.
30. Laura who plays Dr Kerry Weaver on “ER”
32. Gladiator locale
34. Start!
35. Black ___ event
36. ____ behind the ears
37. “Dynasty” actress, Carroll, who became a
spokesperson for breast cancer awareness
39. “East of Eden” actress and major charity supporter,
Seymour
40. Halt
42. “___ Hard” Willis film
43. Singer who became a spokesman for Easter Seals,
___ Boone
44. “7th Heaven” star and hunger campaigner
45. Boring routine
48. Amy Winehouse hit song
52. Jamie Foxx role
54. Joyous
57. Hospital show
58. Acting part
59. Alien fly-bys
61. Quebecois gold
62. Women’s Hearts supporter, ____ Bush
63. The March of ____
64. Second in a movie series
DOWN
1. “Rally with Sally for Bone Health” actress
2. ___ Roy: Scottish hero
3. 3 across’s specialty
4. Plumbing joint
5. Masters starting location
6. Radio wave
7. “We shall ___” moving gospel song
8. “West Wing” pollster who is a strong advocate for the
deaf community, Marlee
9. “Another rainy day” singer from the UK
10. Quiet!
14. Be bold
15. Power of attorney, abbr.
16. Devour
19. Dedicated supporter
21. Actress, Taylor, who has campaigned to raise funds
to fight AIDS
22. Father’s pride
23. Taking life as it comes (2 words)
24. Priest Holmes’ position
28. The Met contents
29. Came to the help of
31. Civil rights organization
33. Olive or castor
34. Information
36. Disability rights leader and TV personality, Bree
38. Close
41. Ipods, for example
46. Teacher’s assistant, for short
47. Rookie
48. Relative, for short
49. Historic time
50. Airport abbreviation
51. It loves to hug!
53. Meal description
55. Lexus __
56. Get your ducks all in a ___!
60. Santa ___?
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SPREAD RESPECT
O
f all the deplorable tactics used by terrorists around the world, the murderous attack on busy Baghdad markets last February, in which two
women with mental disabilities were strapped with explosives and then
blown up by remote control, shocked the world.
While the specific disabilities of the women remain unknown—one was
described as “crazy” and the other may have had Down syndrome—the moral
floor has fallen out of the insurgents’ claims to represent a mass movement,
and the Iraqi government has rightly pounced on the attacks for their anti-alQaida propaganda value. But a deeper question, about the value or the disposability of persons with disabilities, must be addressed.
The Baghdad attacks weren’t the first time persons with disabilities have
been exploited and killed for malevolent political ends, and they likely won’t
be last. Between 1939 and 1941, the Action T4 program in Nazi Germany
systematically killed between 200,000 to 250,000 people with intellectual
or physical disabilities, mass murder in the name of “racial hygiene.”
Sadly, the hideous exploitation of the women in Iraq doesn’t appear to be
an anomaly in modern Middle Eastern terrorism. Afghan security officials have reported that apprehended Taliban bombers with psychiatric
disabilities have been seduced, bribed, tricked, manipulated or
coerced into blowing themselves up as “weapons of God.” At the
end of February, a man killed three Iraqi police officers using a
bomb hidden under the seat of his wheelchair.
Is this a sign that the number of willing suicide bombers is
shrinking? More likely, it’s another example of the desperate
turning against one of society’s most castigated and marginalized groups.
On this point, there’s much the world community can do.
Wide-spread condemnation helps. Al-Qaida has shown itself
responsive to public opinion: When al-Qaida leader Ayman Al
Zawahiri said the release in Iraq of videos showing beheadings had hurt their cause, the number of these acts fell dramatically.
The international community has increasingly recognized the
rights of persons with disabilities. Recently the UN Convention on the Rights of Persons with Disabilities entered into
force. It aims to ensure that persons with disabilities enjoy
human rights on an equal basis with others, and it actively
involved persons with disabilities in the negotiation process.
The convention specifically indicates that no one shall be
subject to torture or to cruel, degrading treatment, and that
legislation and policies should be instituted to ensure that
instances of exploitation, violence and abuse against persons
with disabilities are identified, investigated and, where
appropriate, prosecuted. The convention has been ratified by
26 countries and signed by 129 around the world, many in
the Middle East.
In the heart of that region, Her Highness Sheikha Mozah Bint
Nasser Bin Abdullah Al-Missned of Qatar has pioneered
efforts for the education of children with disabilities and the
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inclusion of persons with disabilities in society.
Qatar’s Shafallah Center provides comprehensive services and care to individuals with developmental learning challenges, their families and the community. It also
recently sponsored a human rights education manual,
Human Rights. YES!, which promotes action and advocacy based on the UN Convention on the Rights of Persons with Disabilities.
Terrorists adopt—and abandon—their tactics strategically. One would hope the horrors in Baghdad are the
death rattle of a bankrupt movement out of options. But
as long as there’s a sense that the persons with disabilities are less than human, and that the horror inflicted at
their expense can be justified politically, such attacks
will continue.
Efforts to raise the acceptance of persons with disabilities as full and equal citizens are essential not only for a
fair and just world, but for removing the rationale for
evil acts perpetrated for a perverse cause.
A
N
S
W
E
R
S
by Valerie Karr
Valerie Karr is a PhD candidate at Columbia University’s Teachers College in New York City, where she studies international perspectives on
the rights of persons with disabilities.
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