Bob Sagat Issue - ABILITY Magazine

MAGAZINE
VOLUME 2011
BOB SAGET
APR/MAY
THE VOICE OF OVER 50 MILLION AMERICANS
$4.99 BOB SAGET APR/MAY 2011
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ABILITY 3
M ANAGING E DITOR
Gillian Friedman, MD
M ANAGING H EALTH E DITOR
E. Thomas Chappell, MD
E DITORIAL D EVELOPMENT D IR .
Pamela K. Johnson
C ONTRIBUTING S ENATOR
U.S. Sen. Tom Harkin (D-IA)
H UMOR W RITERS
Jeff Charlebois
George Covington, JD
Gene Feldman, JD
E DITORS
Dahvi Fischer
Renne Gardner
Regina Hall
Molly Mackin
Josh Pate
David Radcliff
Denise Riccobon, RN
Jane Wollman Rusoff
Maya Sabatello, PhD, JD
Romney Snyder
ASHLEY’S COLUMN — Spring in My Step
10
SENATOR HARKIN — Advancing the Civil Rights Movement
12
MOON FERIS — Sounding Off for the Deaf?
ARTS — The Craft of Education
20
AJ GREEN — The Wish That Made a Star
26
HUMOR — Fraying Genes
31
DYSPRAXIA — Real Emotions
30
BUILDING FUTURES — Schools in Afghanistan and Pakistan
38
ZACH ANNER — Oprah’s Globetrotter
46
BOB SAGET — America’s Funniest Philanthropist
54
Music Within
16
GOOD FOOD — We’ve Got Taste
60
CROSSWORD PUZZLE
63
EVENTS & CONFERENCES
74
SUBSCRIPTION
Paralympic Games Beijing
8
H EALTH E DITORS
Moses deGraft-Johnson, MD
Larry Goldstein, MD
C ONTRIBUTING W RITERS
AJ Green p. 20
Off to school p. 30
Ashley Fiolek
Gale Kamen, PhD
Laurance Johnston, PhD
Andrea Kardonsky
Deborah Max
Myles Mellor - Crossword Puzzle
Paula Pearlman, JD
Allen Rucker
Kristen McCarthy Thomas
Betsy Valnes
W EB E DITORS
Stan Hoskins
Mary Shafizadeh
G RAPHIC A RT /
I LLUSTRATION
ABILITY’s Crossword Puzzle
C O N T E N T S
Bob Saget interview p. 46
Scott Johnson
Melissa Murphy - Medical Illustration
Anna Blagovidova
P HOTOGRAPHY
Nancy Villere—
CrushPhotoStudios.com
Zach attack p. 38
T RANSCRIPTIONIST
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DIRECTOR OF BUSINESS AFFAIRS
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MARKETING/PROMOTIONS
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pring is here, and even though my season has yet
to start, I have been very busy!
During this time of year, I am mostly dedicated to starting my new training sessions. But this year I’ve also
been working on a Red Bull commercial that will debut
in April. I can’t really say too much about it (it’s “top
secret!”), but it was a blast to film! My mom and I went
to California for a week to shoot the commercial and to
do a bunch of follow-up interviews for it. It was actually
a really grueling week, and it made me glad I’m not an
actress! I’d rather ride my bike and have fun than do the
same scene over and over.
The weather has been crazy lately, too! It had been
freezing down in Florida and I was excited to go to California for some warmth—but when we were flying out
there a huge rain storm struck and brought in a cold
front! The track where we filmed was a cold, muddy
mess. Fortunately everyone working on the commercial
was great and we all braved the mud and the cold.
After we finished shooting I headed on over to another
track to do a photo shoot for Honda. The pictures Honda
uses for its press kits and posters had to be finished as
soon as possible, and I was running out of clothes, so
Stephanie, Honda’s public relations person, took us to
her house after the photo shoot and my mom caught up
on our laundry. Then Stephanie drove me to her local
spa and I got a massage! Lucky me!
going along pretty well until my dad got a call from one
of my sponsors, Alpinestars. The sponsor wondered if I
would be interested in doing a skit with Drama from
The Fantasy Factory (a show on MTV, with professional skateboarder Rob Drydek). It sounded pretty fun and
wouldn’t interfere with my riding, so I headed back out
to California, yet again.
Working with the Alpinestars group is a great experience—I’ve been a rider of theirs for five years now, and I
know the team pretty well. My friend Brittany was able
to fly out there with me, too. She knows some sign language, and she and I communicate well together. Since it
was established that I would mostly be riding for the skit,
my mom and dad didn’t need to come interpret for me.
Alpinestars worked with Honda to get my bike out to
me and to bring a bike for Drama to ride, too. My race
mechanic, Toshi, joined us out there, also. It was a long
day, but a lot of fun! I got to ride and goof around on
my bike, Drama and his friends were funny and entertaining, and we all had a great time!
Now I’m back home and ready to ride and train—but
who knows what other cool “projects” might pop up?
ashleyfiolek.com
Friday morning we woke up nice and early to get to the
studio and wrap up everything that was needed for the
commercial. Saturday was the SX race day, out in Anaheim, CA. The race was dedicated to breast cancer
awareness, so my teammates and I signed autographs
and did a bunch of interviews related to the cause. The
SX race was a really cool event, and it was nice to see so
many riders supporting the fight against breast cancer.
After all of the action out in California, it was great to
get back to training and riding at home. Things were
Ashley and Drama having fun on a mini-bike
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people with disabilities the right to participate equally in all aspects of society.
But the civil rights movement was not
just about social justice. It was also about
economic justice, and today Americans
with disabilities continue to face unacceptable obstacles in their efforts to join
the workforce.
On March 2, I held a hearing of the Senate Health, Education, Labor and Pensions (HELP) committee to address this
inequity and, more specifically, to address
the need to improve employment opportunities for people with intellectual disabilities. Some sources report the employment
participation rate for individuals with
intellectual disabilities is as low as 23.9%.
This is unacceptable. The purpose of our
hearing was to highlight the state of
employment of individuals with intellectual disabilities and also to discuss ways
to improve outcomes for this population.
A MOVEMENT FOR EMPLOYMENT
EQUALITY
Dear ABILITY readers,
On March 5, 2011, I had the opportunity to travel to
Selma, AL to take part in the commemoration of a significant event of the civil rights movement. Forty-six
years ago, a peaceful march across the Edmund Pettus
Bridge, led by Dr. Martin Luther King, Jr., ended with
its participants violently beaten by Alabama State
Troopers. This event became known as “Bloody Sunday.” Today Americans gather not only to honor the
peaceful marchers, but also to remember one important
message of the civil rights movement: groups of ordinary people can do extraordinary things.
While taking part in this commemorative event, I
reflected on the progress our country has made as a
result of the hard work of ordinary people like those
who took part in the march on Edmund Pettus Bridge.
The civil rights movement pushed for equality for all
people in this country, and many groups drew powerful
lessons from that effort. One such group was the disability community. Together its members organized events
that, like the Selma march, forced the country to stop
and pay attention.
In March of 1990 Bob Kafka and his fellow activists left
their wheelchairs and crawled on their hands and knees
up the steps of the Capitol building. Bob and his colleagues let it be known the disability community would
not be ignored. As a result of efforts like theirs, laws
like the Individuals with Disabilities Education Act and
the Americans with Disabilities Act were passed, giving
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During our hearing, many of the testifying witnesses
repeated the sentiment that we need to encourage individuals with disabilities to pursue jobs within mainstream businesses. Additionally, we need to encourage
businesses to hire individuals with disabilities. Witnesses testified that businesses could hold employees with
disabilities to the same job standards as employees without disabilities, and should then provide employees with
disabilities the same benefits and wages as those extended to employees without disabilities.
Randy Lewis, senior vice president at Walgreens,
described the resounding success his company has had
since beginning its initiative to hire more workers
with disabilities. Not only has Walgreens’ program
achieved its goal of a more diverse and inclusive
workforce, but the branches at which Walgreens has
implemented the program are the highest-performing
in the whole company. It is clear that a diverse workforce has become an asset to Walgreens and a model
for other companies.
Attendees of the hearing were also moved by the words
of a man named David Egan. David has worked as a
distribution clerk for Booz Allen Hamilton for 15
years, where he earns a competitive wage and benefits.
David, who has Down’s syndrome, has had the same
opportunity for advancement at work—and goes
through the same evaluation process—as his coworkers
without disabilities. During his testimony, David
expressed his desire to see individuals with intellectual
disabilities treated as “one of us, not one among us,”
and to be fully integrated into the workforce. David’s
story beautifully illustrated the pride and independence
that come from having a job. I hope we can help many
Since 1995
more people with disabilities to achieve their goals, just
as David has.
The HELP committee hearing was just a first step.
More efforts are needed in order to achieve economic
justice for all Americans. I was reminded of this fact
while attending the Bloody Sunday event in Alabama
and reflecting on the efforts of the civil rights activists
who took part in the Edmund Pettus Bridge march in
1965. The marchers’ dedication and commitment to a
cause are needed today as we turn our attention to
achieving an integrated workforce—a workforce in
which individuals with disabilities work alongside
those without disabilities. Although it is important to
highlight the success stories of individuals with disabil-
ities who are achieving great things in the workforce
today, we must work towards an employment environment in which these stories remain inspirational but
become unremarkable.
Sincerely,
Senator Tom Harkin
Senator Tom Harkin (D-IA) is Chairman of the
Senate Health, Education, Labor and Pensions Committee
harkin.senate.gov
ABILITY 11
nder the leadership of Feris and her husband, Eric, WIN has donated generously to
a variety of causes, including Kids of Deaf
Adults (KODA) camps, a school for the
deaf in Riverside, CA, and a children’s teeball team in Austin, TX.
ABILITY’s David Radcliff caught up with Feris for an
online chat, shortly after she had been selected for “The
Pearls”, a gala honoring high-achieving deaf women.
David Radcliff: Congratulations on being honored by
“The Pearls”.
Moon Feris: Thanks!
Radcliff: I’m interested in knowing a little about the
kind of work that you do.
Feris: A little over five years ago, my husband Eric and
I set up Western Interpreting Network, basically from
scratch, in a home office. He’s the President and I am
the Vice President. We are both deaf, so we understand
the needs of deaf people when they request an interpreter. Most other companies focus only on the hearing
party. We ensure that the deaf person is satisfied with
his or her interpreter.
Today our business has several locations around the United States. We’re the only company that always provides
interpreters who have earned certification. Other companies may send certified interpreters, or may not, but we
are the only ones who can always guarantee them.
Radcliff: What were you doing before you decided to
start your own business?
Feris: I was the Coordinator of Recruitment at Gallaudet
University in Washington, DC. Every job I’ve had has
been different and has provided me with the tools to do
what I am able to do today. But I’ve always used an
interpreter throughout my primary, secondary and university education, as well as in the workplace.
Radcliff: Do you find people are generally accommodating to the need for an interpreter, in the workplace and
in schools?
Feris: Overall, yes, although I think many people need
some education on how to “use” an interpreter. When I
was growing up, I was sometimes in situations where
people didn’t know how to appropriately make use of an
interpreter and, because I was young and didn’t know
better, I was not very able to advocate for myself.
Radcliff: Can you give an example of that sort of circumstance?
Feris: Well, many people talk in the third person about
the deaf person who is right in front of them. Rather
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than say, “Can you please do this?”, they’ll turn to the
interpreter and say, “Can you tell her—?”
Direct communication is key. Even some deaf people
need to be educated on how to use an interpreter appropriately. Sometimes they don’t know the difference
between interpretation and transliteration.
Radcliff: You mean, because you are using an interpreter, you can’t expect to get get a direct “transcription” of what is being said? Just an approximation?
Feris: In essence, yes. Interpreting is when the interpreter translates one language to another and transliteration is more verbatim: it’s English-based signing. American Sign Language (ASL) is its own language with its
own syntax and grammatical rules. A transliterator is
good for someone whose first language is English, or
who prefers to receive a visual form of English.
Radcliff: Earlier you mentioned “the needs of deaf people when they request an interpreter.” What are some of
those needs with which people who can hear might not
be familiar?
Feris: They vary. At our company, we discuss with each
individual client what his or her interpreter preferences
are, to make sure the interpreter we offer is a good fit
for the situation. Sometimes it might be a highly technical situation or environment, in which case the interpreter might need to have a background in or knowledge
of a specific subject. Or there might be a sensitive medical circumstance involved, in which case the deaf person might be comfortable only with a specific interpreter. We also frequently advocate for a deaf person
who has had a problem in getting an interpreter.
Radcliff: Does that happen often? I’d want to believe
that in 2011 people would be accommodating.
Feris: Oh, it happens all the time. Convincing people to
provide interpreters is a constant struggle for deaf people.
Radcliff: I assume some places just don’t want to deal
with the expense of providing one?
Feris: There is that, yes. Although, given the tax credit in
the Americans with Disabilities Act (ADA), that’s not a
smart position to take. Most often the problem is simply
ignorance of a person’s communication needs. Essentially, you can’t write in English to a person whose first language might not be English.
My advice to deaf people is never to let anyone tell you
“no” when you need an interpreter. Stand up for your
communication access rights. There’s a Federal lawmore than one, actually-that is relevant here. Deaf people can file federal complaints when reasonable accommodations required under the ADA are denied. There
can be punitive damages, in addition to corrective
action, ordered. Unfortunately, though, most violations
go unreported. It’s hard being an advocate when you’re
oppressed at the same time.
Radcliff: You mentioned that, in your youth, you weren’t
as strong an advocate for yourself as you are today. I’m
curious about those experiences, growing up.
Feris: I remember an instance when I was attending university in Australia. I was in a group of people, all discussing something, and people would say, “What does
Moon think?” But they wouldn’t speak to me directly.
When that happens with someone today, I teach him
how to speak directly to me.
I’m a better advocate today because I’m more aware of
and knowledgeable about my rights. That comes from
experience.
Radcliff: It’s alarming that people would have to be
“taught” how to speak directly to you.
Feris: Most hearing people have never really encountered a deaf person.
Radcliff: Did growing up deaf ever present challenges
for you in making friendships with other kids? You seem
very confident today.
Feris: I was shy, but the communication access I had
when I was younger helped a lot, and my mum always
encouraged me to keep in touch with my deaf peers,
which helped me grow as a deaf person.
When I was in primary school, the teacher and most of
the girls in my class signed or knew the basic alphabet. My mum was a big part of that effort because we
had basic signing lessons in the classroom and she
actually interpreted for me for two years, until I told
her I didn’t want her to be there anymore. After my
mum, I had other interpreters and note-takers from
sixth grade onward. Once I had those full-time, school
was much easier. In middle school and in high school,
I always had a few friends who could sign fluently.
And on the weekends I spent time with my deaf
friends. I had deaf friends all through my life. I felt at
home with them.
Radcliff: What did you study while at university?
Feris: Behavioral Science. And then I received my
Graduate Diploma in Psychology. It was all good preparation, because my business is all about people. Today
my husband and I oversee one of only a handful of deafowned interpreting agencies in America.
Radcliff: When did you first feel an urge toward advocacy for the deaf? Was there a specific turning point in
your life? A specific age?
ABILITY 13
Feris: It really came from seeing my mum advocate for
my rights throughout my childhood. For example, where
I grew up in Melbourne, there were two different schools
for the deaf: a signing school and an oral school. I was
enrolled in the signing school. One day, when I was
seven, a group of us went on a tour of schools, and I was
placed in the group that toured the oral school.
I came home that day and asked my mum why I had
toured the oral school when I communicate by signing.
She wasn’t sure why, so she called the school and was
told that I had been placed in the oral school for the
upcoming year. The people who evaluated me said my
family and I had no choice in the matter. My mum was
outraged and asked that I be put in a primary school and
mainstreamed. Her request was denied. This was at a
time when deaf children simply were not mainstreamed.
So my mom set out to find me a private school. She
begged the principal at Methodist Ladies College to let
me study there one day a week, just to see how I did. I
went there for one day a week for a full term and I did
so well there that I was accepted as a full-time student
for second grade. That was the first time I’d been
exposed to advocacy, and it was through my mother.
Radcliff: I’m sure some of our readers are wondering,
“What’s so bad about an oral school? Why couldn’t
Moon go there and save herself all this trouble?”
Feris: Well, I am profoundly deaf. Even though I had
hearing aids at the time, they were basically useless for
me. Since oral communication is based on sound, there
was no way I could possibly relate. Often deaf children
put in oral education environments are deprived of
language development, due to lack of access.
But as you can see, the fact that I grew up speaking only
sign language has not negatively impacted my English.
Radcliff: I want to make sure to talk a little bit about
your family. You have a baby named Liam. Is he your
first child?
Feris: We also have a fourteen-year-old named Leif.
Radcliff: I love those names.
Feris: Thank you!
Radcliff: Leif signs to you and your husband, I would
assume.
Feris: Yes he does. He is a Child of Deaf Adults
(CODA) and proud of it. The CODA community is very
tight-knit. It’s an international one, in fact. They have an
international convention every two years. They have
their own set of experiences, their own concerns and
challenges. As I mentioned, people will often say, “Tell
your parents—”
Radcliff: Oh, right. Same old problem.
Feris: Right. And that really gives children an element
of control. Some children like to take advantage of that
control. But the ideal situation is that this is my child,
not my interpreter.
Radcliff: And I assume it allows him to decide what he
conveys to you and how. “My teacher says to tell you
I’m doing great work in class!”
Feris: Exactly! “This chocolate milk is free, they say!”
But also, CODA have their own humorous experiences
they like to share with one another. They imitate “deaf
voices” and noises. Things like that.
Radcliff: Leif is approaching an age where he might be
a challenge for you!
Feris: Oh, boy, yes! He is a teenager all the way. But he
is a very proud big brother. He also likes to make a few
dollars babysitting. So that’s a win-win situation!
Radcliff: One of the issues that is a major interest of
mine is how people with disabilities are depicted in the
media, in the rare event they are even depicted at all.
During your formative years, did you ever see anyone
on television or in film that you found relatable in
respect to your deafness?
Feris: Not really. I did sometimes see movies that had
deaf actors or actresses, but the situations of the characters were different from my own. The volume of deaf
people in media has increased, but how those characterizations are rendered hasn’t changed much. We’re still
portrayed as a novelty. I would like to see more positive
depictions of people with disabilities, in the style of
Geordi on Star Trek: The Next Generation. He’s a blind
man, but he is part of the crew and his blindness is not
really the point. We don’t often see deaf people portrayed in that way. It’s always about their deafness.
Which is sad, because I think a lot of deaf people lead
interesting lives on their own merit.
Radcliff: That certainly seems true in your case. You
seem to have a very full life.
Feris: I do. I’ve traveled the world and so I have seen
many people who are truly badly off. I’m very happy
with who I am and I don’t feel like I’m missing anything.
I can’t hear, but it doesn’t matter.
westerninterpreting.net
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hrough implementation of everything from fingerpaints to Picasso, the students at Arts and Services for the Disabled (ASD) are breaking into
new territories of artistic expression. Surrounded
by creative stimulus and substance, these students
are immersed daily in an artistic way of living and
of viewing the world.
“It’s like being in art school,” says Honor Dunn,
the program’s creative director. “The students have
a really hard job: they’re being called upon, every
day, to reveal their souls and to be vulnerable and to
create. That’s not something everyone can do.”
With a master’s in fine arts degree from Cranbrook Academy of Arts, Dunn knows a little something about the
unique demands of being an artist. She also knows how
to help a student’s talent blossom and thrive. The dropout
rate at ASD—unlike that at most art academies—is nil.
Judging by the student art on display at the George V.
Deneff Gallery—named after the father of ASD CEO
Helen Dolas—participants in the program seem more
than able to tap into their creative channels. Every three
months the gallery hosts a new exhibit, giving artists
with disabilities in the North Orange County/South LA
ABILITY 17
County area a place to display their creative works.
November 2010’s art show, titled “Exquisite Creatures”, featured collaborative pieces from three California programs: ASD, a Culver City-based organization called LA Goal, and Hope University in Anaheim.
Every piece in the show portrayed a “human-esque”
creature in three canvas panels. Each panel was submitted by a different artist, or group of artists, and represented a body section (head, torso, legs) of one of
these colorful figures. The panels were then cobbled
together to create each finished “creature.”
The talent and influence of ASD crosses a multitude of
disciplines. Through a recent project called “Artbeat for
Humanity”, the students painted drumheads donated by
Remo Drums, the largest drum company in the world.
ASD students displayed their pieces in a gallery space at
the Remo Recreational Music Center in North Hollywood.
“There’s a plethora of opportunities we just haven’t
explored yet, because artistic creation is endless,” Dunn
says. “Our students are given that human right to discover
inspiration and the creative spirit.”
As part of ASD program, students learn how to matte,
frame and market their pieces. According to Dolas, one
of the program’s most attractive strengths is its ability to
engage students not only in art, but also in the professional life of an artist. “Part of the Arts and Services culture is the community,” Dolas says. “We don’t just offer
services—there is also a necessary, synergistic relationship around the arts.”
Dolas founded ASD a year after completing a bachelor’s degree in music therapy at California State University, Long Beach. She then went on to acquire a master’s degree in special education from the same university. Many of ASD’s instructors hold bachelors, masters
or even doctorate degrees in art, which is a point of
pride for Dolas and the rest of the staff.
Not all ASD participants are there for the opportunity to
create and promote art, however. “Other groups just
love this therapeutic environment,” Dolas says. “They
enjoy the chance to be part of a social network. They
take advantage of volunteer opportunities and other
things we offer.”
An afternoon tour of the ASD facility reveals not only
the art gallery, but also a small office, a kitchen and eating area, a classroom, and a music room. Because the
organization receives entitlement funding from the state,
through the Department of Developmental Services, students at ASD attend at no charge. The business also
benefits from corporate and regional sponsorship from
The LA Arts Council, The National Charity League,
Weingart Foundation, Boeing, and Northrop Grumman.
As we continue to explore, Dolas points out a man who
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laughs as he paints in deep blues and purples. “Dennis is
one of our most prolific artists,” she says.
Nearby, others students watch Hook, Steven Spielberg’s
re-imagining of the Peter Pan story. I am introduced to
Rebecca Rivera, an ASD staff member who helps coordinate the organization’s Artbeat Radio program, and
learn of a grant that enabled the students to participate
in an internship with the LA County Arts Commission.
Once a month for three years, the students studied radio
production with KPFK Radio in Northridge. They
recorded music, interviews, and poetry. They learned
the demands of hosting a radio show. On completion of
the program, a podcast of all their materials was posted
on their website. At present, Rebecca tells me, ASD is
searching for underwriters to fund their own 24-hour
radio station, to be run by the students.
In a visit to ASD’s “GO! Store”, I sort through aprons
and t-shirts that boast interpretations of famous art
pieces (some by Matisse, some by Picasso), each of
which are rendered by the students, and then heatpressed onto the fabric. I pick up hand-painted mugs
and bowls made of clay, glazed and fired.
According to Dolas, what had begun as a gift shop for
the students to organize has quickly grown to address
demand from the community. “We’re actually low on
inventory—we just had a couple of holiday boutiques,
and we sold quite a bit,” she admits.
Near the end of our tour, Dolas takes me into the music
room. It’s here, Dolas says, that ASD staff and students
participate in drum circles, Tibetan bowl sessions, and
relaxation workshops. In one corner of the room, a massive drum calls my attention. “This is our table drum,”
Dolas tells me. “Anyone in a wheelchair can come up
and play. Big groups of students can play together.”
At our touch, the drum booms. Dolas picks up a guitar
and starts strumming and singing. Though she tells me
the piano is her primary instrument, it seems this
woman can play just about anything—the ideal mentor
for any aspiring artist.
by Molly Mackin
artsandservices.org
ABILITY 19
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Photos by Nancy Villere - CrushPhotoStudios.com
BILITY’s Chet Cooper and Molly Mackin
spoke with Green—joined by his friend and
consultant, Robert McLellan—to discuss his
career, education, and the journey ahead.
Chet Cooper: You recently got a chance to visit with,
and sing for, President Obama. Not too bad for an 18year-old. Tell us what that experience was like.
AJ Green: I did sing for President Obama. But even
before that, I sang for President Clinton at a rally he had
held for Senator Harry Reid.
Cooper: How did that opportunity come about?
ABILITY 21
Green: Well, I’m known around my school for being a
singer—the staff know I’m a singer, the students—so
they asked me if I would sing at the rally President Clinton was holding for our Senator. I sang the national
anthem, and President Clinton was there, and he applauded me. He said I had a good voice and everything.
Green: I haven’t done any mentoring, really, but I have
a love for kids. That’s what really makes me want to be
an elementary school teacher. We don’t have many of
those in Las Vegas.
Cooper: How did you get an opportunity to be onstage
with Jennifer Hudson?
Cooper: This was in Nevada?
Green: Yeah. And then they asked me to sing for President Obama when he came for a rally for Senator Reid.
That’s just how things came about.
Cooper: So now can we expect to see you go into politics?
Green: [laughs] No, not at all.
Cooper: How did your school know that you sing? Do
you walk around the halls singing all day?
Green: Actually, I think that’s how it came about. I
always walk around the halls, singing. Plus, I’ve done
many performances in school for different programs.
People always ask me to be
the one to sing.
t
s
w
t
Also, because I have sickle
cell disease, The Make-AWish Foundation gave me my
wish of recording a gospel
album with a producer.
r
Cooper: That was your wish?
To make an album?
Green: That was my wish. That’s how all these opportunities came to be, actually. It was because I was
singing at something on behalf of Make-A-Wish that I
met my agent.
Green: Oh, that came about from being at André Agassi’s Grand Slam, which is a big charity event in Las Vegas.
Cooper: Sponsored by Denny’s?
Green: [laughs] No, no. Andre Agassi does a yearly
charity event to raise money for his school and for his
Boys’ and Girls’ Club in Las Vegas. He personally
asked me to sing at the event.
My rehearsal was with David Foster. Jennifer Hudson
showed up, and somehow, some way, we ended up
doing a duet together.
Cooper: And you’ve got an album coming out, too! Is
that right?
Green: I have an album coming out called Whatever You
Need. Right now I’ve just
been singing at different
places, but soon I’ll become
the spokesperson for the
Sickle Cell Disease Association of America. Hopefully
we can raise awareness and
help find a cure. Sickle cell
disease is not as well-known as cancer. Also, we want to
encourage more people to donate their blood.
Cooper: Tell us a little bit about how sickle cell affects
your body.
Molly Mackin: Are you still in high school?
Green: I graduated in June of 2010 and took a semester
off to do music and see how things go with my career.
I’m starting college on Monday at the College of
Southern Nevada.
Cooper: Have you decided on a major, yet?
Green: Elementary education.
Green: Sickle cell is a pretty hard disease to deal with.
Generally a person’s blood cells are circular, but in a
person with sickle cell disease, the cells are crescentshaped, so they kind of get caught in the bloodstream,
which causes a really excruciating pain. It really hurts.
Sometimes I’m in the hospital for maybe a week, or a
month. It depends on how bad the pain is.
Cooper: Where does it affect you in your body? Where
does the pain radiate from?
Cooper: Somehow I thought you were going to say music.
Green: I couldn’t decide between the two, actually, but I
want to have a backup plan, and being a teacher was my
next choice.
Cooper: Have you worked with kids before? Do you do
any mentoring?
Green: You never really know where it will come from.
It moves around, and you can’t stop it. There’s no cure,
so it’s just something you have to deal with. You can
lessen the pain by drinking a lot of water.
Cooper: You try to keep hydrated as much as possible?
Green: Keep hydrated and take pain medicines. That’s
22
ABILITY
Photos by Nancy Villere - CrushPhotoStudios.com
about it, really. Pain medicine and singing don’t go well
together, because some pain medicines dry a person out
or cause sleepiness.
Robert McLellan: The problem is that we’re talking
about a genetic disorder, so even after you extract the
sickle cells, they come back. It’s a therapy, not a cure.
You can’t just replace your blood.
Cooper: What is done for you at the hospital?
Green: Doctors give me fluids and pain medicines.
There’s not really that much else you can do about it.
Basically, they give me intravenous fluids to push the
stuck cell. So I’m in the hospital for however long the
cell takes to push through.
Cooper: You mentioned wanting to encourage people to
donate blood. Are you saying you could get blood transfusions that would actually start to alter the amount of
sickle cell that you have in your system?
Green: That’s right. I’ve done a blood transfusion therapy in which you’ve got one needle pulling out sickle
cell blood and another needle putting in healthy blood.
Mackin: How does that work? What percentage of the
non-sickle blood comes out?
Green: I have no clue. I think it depends on how much
of the unit they can pull in. I really don’t know.
Green: You can have an iron overload, also, from getting too much blood. It’s a tough situation. But I think
of this whole thing as a blessing and a curse.
Cooper: That is interesting, isn’t it? Your career actually
has been helped by Make-A-Wish and by the unfolding of
all these events.
Green: Exactly. And that’s something I wasn’t expecting. At first, I looked at sickle cell as holding me back,
but as I started singing more I realized that everything I
sing tells a story of pain, I guess you might say.
I think recording my album showed how sickle cell can
be such a hurdle in my life, but it also showed my
strength. The night before I was about to go into the
studio to record, I think, four songs off of the album, I
got really sick. I had a lot of pain in my legs. It got so
bad that I started crying. I felt like a construction worker was just hammering at my body.
ABILITY 23
Photos by Nancy Villere - CrushPhotoStudios.com
I woke up that morning and I was just, like, “I don’t
think I’m going to do this.” I was about to stop the
whole project, but I had put too much time and effort
in. I had worked too hard just to get to the studio. I had
to take pain medicine and it dried me out, so I had to
drink a lot of water. The whole thing took a lot out of
me. But I pushed through, and I was able to be very
strong through it. I didn’t think I was going to make it,
but I did. And, as soon as I’d left the studio that day, I
went into the hospital for I think a week.
Cooper: Your voice was strong enough to record?
McLellan: We re-cut a large part of track.
24
best friend was a girl named Jennifer Lyon, from the TV
show Survivor, who had just passed away from breast
cancer. Steve had been with her just before she’d died.
Steve was just dying. He was probably thinking, we
were supposed to be doing this guy a favor. This is supposed to be a blessing, not killing him. But again, the
adversity is the thing that opened up this door. The studio at The Palms threw AJ a birthday party beyond all
belief. They totally adopted this project, because they
bonded with the family. The studio at The Palms is one
of the best studios in the whole damn country. The next
day, AJ was back in the hospital for almost a week. And
then we still came back and finished.
From my perspective, this whole experience has been
pretty amazing. I had met AJ in Las Vegas, his dad and
mom gave me his gospel CD, and I was unsure what to
expect. I thought maybe Make-A-Wish was just doing a
nice thing. So my friend Steve and I got together and
we’d thought we would do a song or two, and then as
we got people involved, everybody started hearing
about AJ’s story and signing on. We ended up with 10
songs and a record.
Mackin: Can you describe your recording process?
Later, we go over to the studio at The Palms, and I have a
video crew there. AJ comes rolling up in a wheelchair.
My friend Steve was just wrecked, seeing AJ. Steve’s
Cooper: Who were some of the names you worked with?
ABILITY
Green: The recording process was a new thing for me,
because that experience at The Palms was my first real
time in a studio, doing original work. The traveling is
the best part of the process: I got to record in Houston,
Los Angeles, and at The Palms, of course. I also got to
work with some of the greatest producers, some of the
best people.
Green: I worked with Ron Harris, who worked with
Christina Aguilera. I worked with
Michael Wilshire, and with Rob Chiarelli, who has worked with Mary Mary and
Lee Rugless. I think that’s about it.
Cooper: Why did you go to different
places to work?
McLellan: Different people were contributing songs to the project. Everybody
that’s on this record basically donated his
or her track. Everyone sent rough tracks
and AJ listened through them and said,
“Gee, I like this song, I like that song.”
The record is very diverse. It’s not like a
studio album for which someone would
say, “Let’s have this direction.”
What we wanted to do, more than anything, was give AJ a calling card that
would open doors for him. We want the
kid to have access to the whole range of
options, as opposed to hearing someone
say, “You’re a ‘this’ artist.”
Mackin: AJ, were you part of the mixing
process?
Green: No. I think if there’s a follow-up
album, I want to do some writing on it.
That’s something I’m interested in. I
want to see how it all works out behind
the scenes, instead of just contributing
the vocals.
Mackin: So the songs on your album
aren’t originals?
Green: They’re original songs, but
they’re not my original songs.
McLellan: They’re not covers. This is
more like a Celine Dion project. She
doesn’t write originals, either.
Green: This is pretty diverse. Pop, R&B,
everything. The album I did with MakeA-Wish was a gospel album.
Cooper: You mentioned that teaching
was your backup plan. Maybe there is a
way you could do both?
Green: Yeah, I think if the music goes,
I’ll definitely take it. I can always be a
music teacher, right? For kids.
ajsmusicroom.com
ABILITY 25
e all have many choices in life, from
the cars we drive, to our cell phone
carriers, to what we want to put on our
cheeseburgers. The one thing we can’t
choose is our family. They say it’s tough
growing up without a family. I think it’s just as tough
growing up with one. I have heard horror stories about
people’s families: the overly eccentric grandmother, the
gruff, drunk uncle, the prancing cousin who only likes
Broadway musicals. Sure, there’s always a bad apple, a
black sheep, or an oddball we’d all like to prune from
the family tree. No one ever said a family would be
easy. (Our neighbor’s had an easy daughter, though.)
Anyhow, I was fortunate to have a great family—the
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ABILITY
only time we ever fought was when were together. But,
just as in everything, there is the good and the bad…and
my brother, the ugly.
So, let’s talk family, since I have so many fond childhood
memories.
Birth is a very emotional experience. When I was born,
I cried like a baby. I joke. Actually, my parents cried
when I was born. Having a child can really change a
person. I’m pretty sure my parents never considered
homicide before they’d had kids. But, like I said, people
change. When I was five, I used to wet the bed. Finally,
my parents got fed up and limited me to three beers a
night. I remember once asking my mother if I was one
in a million. She said, “No, you were won in a raffle.” I
always thought I was born in Boulder, Colorado. My
father recently corrected me, “No, we found you underneath a boulder in Colorado.”
We used to move around a lot when I was younger. I
think it’s because we lived in a Winnebago. I’d usually
go to school in whatever town we were in when we ran
out of gas. I actually ran away once. My parents had my
picture placed on a milk carton. They made sure it was
put on the inside.
Kids are always good for breaking up the monotony of a
marriage. They add new life to the ho-hum party. Sometimes it’s a good thing. It gives the couple something to
talk about: “Those kids are going to be the death of me.”
“Did they get their bath this month?” “Have you seen
my beating stick around?”
My parents always avoided the kids at all costs. To
them, it meant work of some sort. Incidentally, did you
ever lose something for a long period of time and then
find it? It took me about a year and a half, but I finally
found my parents hiding in the basement. I knew they
were around somewhere. “I thought you said you were
going to make me a sandwich, Mom?”
My parents are really old-fashioned. For example, they
always insisted on meeting the hooker before I paid for
her. My mom’s Swedish and my dad’s French and I’m all
Irish. The reason I say that is, I rish I was good-looking, I
rish I was wealthy, and I rish I wrote better jokes.
Some things my mom does annoy me. For instance, the
other day she called me and started asking me things
like, “Have you done your laundry? Did you vacuum
and dust your room? Did you wash the dishes?” I got so
disgusted, I hung up on her. I hate when she talks “dirty.”
My dad used to make us breakfast. Every morning, he’d
stand over the stove, whipping up pancakes in his boxer
shorts, rubbing his crotch and bum. I guess he liked to
make everything from scratch. Then he took us to the
bus stop and told us to wait patiently in the middle of
the street for the bus.
Dad’s always had strange habits. My father used to
walk around the house, scratching his ear with a ballpoint pen. At first I thought he was jotting memos
down on his brain, but he did it so much I actually
thought, he’s writing a whole stinking novel.
Dad always wanted me to read more and not watch TV.
I took his advice. Every night, I would spend an hour
reading TV Guide.
I recall looking over some of my father’s old records,
when I was a small boy. He had quite a collection:
breaking and entering, theft, arson. The family was
rather proud of him. I had only Bread’s Greatest Hits.
Luckily, my father was a very peaceful man. He always
told me, “Never raise a hand to anyone; just turn away.
Then spin back around and kick ‘em in the groin.”
One time I went fishing with my dad. It was a very special day. We got along like great buddies. He said, “You
want a beer, ol’ chum? Ready to do some fishing,
chum?” Then we encountered a school of sharks and,
right as he picked me up, I realized why he had been
calling me chum all day. There’s nothing greater than a
father and son relationship.
You always have to remember to be kind to your parents. The last time I saw my mom, I hugged her and told
her how wonderful she was. She smiled and responded
back with those three special words: “Who are you?” I
used to like stopping by Mom’s house to get some of
those good, old-fashioned, homemade TV dinners.
I also loved to go outside and play. My mother loved it
even more. “Would you damn kids get out of my hair?”
was her mantra. Before we got out of her hair, though, we
had to make our beds. One time my mother found me
playing in a dumpster. She was so mad. She started
yelling and screaming at my father for putting me in
there. “I told you they pick up the trash on Thursday!”
Oh, the trouble a troubled youth gets into. When I was
12, I got my ear pierced. I didn’t want to—it’s just that
my brother had a Daisy BB gun. My brother and I were
always getting into trouble together. I was the one who
always broke things, and he was always the one I
blamed it on. I used to lie for my brother. One time I
dented my father’s car, and when my dad asked me who
did it, I lied and said my brother did. This reminds me
of another story: We drove my parents’ car before any
of us had a license. We honestly didn’t think we’d get
caught, but my dad’s pretty intuitive. He knew he would
never, ever park the car wrapped around the Sycamore
tree in the front yard.
My dad didn’t give me crap as a kid. Wait a second, I’m
wrong. My dad gave me nothing but crap. He always
claimed I was lazy, which was certainly not true. Time
and time again, he would say, “You haven’t done anything all day.”
For extra fun, we used to dress my brother up in my sister’s clothes. He’s grown up now, so we dress him up in
my mom’s clothes. We still do things together. A few
months ago, we were playing football in the street, and
some guy ran over my brother and broke both his legs.
For weeks my brother complained about his medical
bills. I said, “Quit your whining; that’s nothing compared
to the money I had to pay the driver for the job.”
I would reply, “That’s not true. I slept all day.”
Speaking of money (which always comes into play
ABILITY 27
with a family), my brother’s been borrowing some. For
a while he’d come over every week and I’d hand him a
check. I finally got sick of it, but I couldn’t say no to
him. So one day I wrote four simple words on the back
of the check: I have a gun. I think you know what happened when he handed it to the cashier. He doesn’t ask
me for money anymore. How can he? He’s in prison.
Growing up, siblings are always fighting with one
another. I had a weird family: my sister had three brothers and I only had two. My sister would always squeal
on me for the littlest things. I can still hear the piercing,
whining voice: “Mom, Jeff lit my hair on fire again.”
he finally died, we honored him once a year by going
down to the cemetery and spitting on his grave. I never
liked talking to my grandfather. He used to work for the
railroad, which is why I think he had a one-track mind.
Gramps was also a decorated soldier, mainly because we
couldn’t afford a Christmas tree. He looked so good
standing in the corner, with tinsel wrapped around his
body, a star on his head and some blinking lights peeking out from his hiked-up pants.
My grandmother always remembered my birthday—
usually six months after the fact. I never cared, as long
as she sent money. I’m the type of guy whose love can
be bought. Just last month I received a card from her
with 20 dollars in it. They were all singles, which really
upset me, because it tells me she’s still stripping.
The last time I was over my grandmother’s house, I was
sitting at the table, eating dinner. I got full and couldn’t
eat another bite. Grandma started piling more food on
my plate, even though I kept telling her I wasn’t hungry.
“How ‘bout a little more string beans?” she said.
When my sister got braces, I went out and bought a
jumbo magnet. Whenever she got on my nerves, I’d
whip that thing out and drag her around the house by
her mouth. Oh, the joy a brother and sister can have. I
think it made us closer.
When we were little, my sister had one of those Betty
Crocker ovens and would dance around, taunting and
teasing me, singing, “I got a cupcake and you don’t.”
And again, “I got a cupcake and you don’t.” A few
years ago, she had some kidney problems and needed a
transplant. The day I found out I was a match, I danced
around her hospital bed for an hour, singing, “I got a
working kidney and you don’t.” Paybacks are hell. And
oodles of fun.
In high school, I went to the Prom with my sister’s best
friend. I’m sure I looked stupid dancing with a Barbie
doll. I was so embarrassed that we jumped in her
camper and left early. Ah, memories. I recently ate dinner over at my sister’s house because I had forgotten
what salmonella poisoning was like. I was reminded
every day for the next week as I remained at home, near
a bathroom and curled up in a hurting tummy ball.
Seeing the grandparents was always a unique experience. Nothing pleased me more than repeating my
answers to their questions: “I said, ‘It smells like BenGay in here!’” The last time I saw my grandfather, I
asked him if he could loan me a hundred bucks. He just
ignored me. So I asked again, real nicely: “Hey Gramps,
how ‘bout throwing me a C-note for old time’s sake?”
He didn’t say anything. I was pissed. The next thing you
know, we started wrestling. It was ugly. Real ugly. I
knocked the breathing tube out of his mouth and kicked
his ventilator over. The stingy SOB still wouldn’t let go
of his wallet. Sometimes old people are so stubborn.
My grandfather chewed tobacco his whole life. When
28
ABILITY
“No thanks, Grandma. I’m full.”
“How ‘bout some Jell-O mold, a couple of tiny rolls and
a little more roast beef?” she nonchalantly replied,
putting the food on my plate.
“Really, Grandma, I’m good.”
“Here’s some mashed potatoes, sweetie,” she offered,
ignoring me as she dug into the bowl.
Like a crazed grandson, I grabbed the back of her gray,
thin hair and slammed her face into the plate of food.
“How ‘bout you eat a little more, huh?” I snapped. “You
hungry, lady? Cause I’m not! You hear me! I’m not!”
Eventually, I stopped because a clump of hair had come
off in my hand. With Grandma’s dentures stuck in a pile
of sweet potatoes, I felt ashamed, but yet, relieved. She
looked up at me with globs of gravy and stuffing on her
face. She softly mumbled something. My chest heaving, I
struggled for air as I eyed the elderly food-pusher, up and
down. “You got something to say, woman?” I sneered.
Flashing a gummy smile, she said, “How ‘bout a little
sliver of apple pie?” Our dinners always end the same,
with me taking her down hard to the floor. The three
jujitsu classes I took in eighth grade did come in handy.
She always tapped out.
I’m sure you can relate, or maybe you even have similar
family stories. Amazingly, my parents still love me.
More amazingly, I made it through the tumultuous years
to write about it.
“Ham on
a Roll”
by Jeff Charlebois
jeffcharlebois.com
ABILITY 29
30
ABILITY
know what you’re thinking: “Dyspraxia? Doesn’t
that have something to do with dyslexia? Or autism?”
This is a common misconception. While dyspraxia does
have links to both of those conditions, it’s best described
as a syndrome that prevents messages from being properly transmitted to and from the brain. Many of these
chemical messages allow a person to perform commonplace tasks. When such signals are blocked, a person
can experience clumsiness, slightly slurred speech, awkwardness in walking, short-term memory loss, and a
tendency toward shyness.
explored how people with the condition actually deal
with dyspraxia. It was simply not a condition that was
understood in the 1980s and early 1990s, when I was
growing up.
So how do people deal with dyspraxia on a daily basis?
My hope is that this article begins to answer that question by sharing some of my own experiences. I am nearly 30 years old, and live in England, but dyspraxia is
universal and knows no age. Anyone, anywhere, can
have this condition.
Dyspraxia is classified as an “invisible” disability,
because it does not manifest itself in a dramatically
noticeable way to the casual observer. Nevertheless,
someone with dyspraxia may experience a multitude of
symptoms, or just a few. Some lesser-known symptoms
of dyspraxia include noise sensitivity, poor concentration and difficulty with social situations.
I was first diagnosed as dyspraxic at age 15, and when
doctors finally put a name to what I had been feeling, it
was as if a light had been switched on inside of me.
Suddenly I wasn’t just “clumsy” or “awkward.” Suddenly I understood why I felt a bit “different” from my
classmates. I had always been geeky and socially awkward, but had always believed that was just, well, me.
Now I understood the bigger picture of dyspraxia.
As someone who lives with dyspraxia, I’ve spent a lot
of time reading about the condition, including theories
about its causes, and management of its effects. Until
recently, however, I struggled to find many studies that
But how could I have understood my condition if no one
had told me about it? Remember, this was back in the
day before Broadband Internet, or even Google. Dial-up
Internet didn’t tolerate complex search inquiries, so
ABILITY 31
there wasn’t exactly a plethora of material to call upon,
even if I had been able to log online.
It wasn’t until I’d laid my hands on a book imaginatively
titled Dyspraxia, by Dr. Amanda Kirby, that many of my
questions began to be answered. While reading Dyspraxia, I felt as if Kirby had written about me. It was as if she
had watched me grow up and had written her book based
on my experiences. Something began to coalesce in my
mind as I read her words: this is a disability, isn’t it?
Bizarrely, it had never before occurred to me that I was a
person with a disability—or a person with any other kind
of label. I only wanted to understand my condition so I
could deal with it, not be defined by it. As a child, I was
terrified at the thought of being labeled as someone with
a disability. I often kept my feelings to myself, like
guilty secrets. So it was amazing to reach the age of 16
and finally understand there was a name for all of the
things I was going through. I became determined to live
my life without being hampered by my condition, and
that dedication made me even more frustrated by the
lack of information that was available.
After reading Dr Kirby’s book, however, I understood
for the first time that my severe clumsiness and atrocious handwriting were due to something more than just
“lack of effort”. My inability to concentrate when in
noisy environments wasn’t just due to me being easily
distracted. My social awkwardness was not simply due
to me being shy or lazy.
Every so often, I would look at other people my age and
wonder, “Why aren’t they as clumsy as I? Why am I tripping over my feet, and my words, every other minute?
Why aren’t they?” I used to dread speaking in front of a
classroom, because I could never go more than a few
sentences without stumbling over a difficult word.
Although those circumstances do still happen today,
years of working with the public have helped me to curb
their worst excesses. I can sometimes go a whole conversation with only a couple of brief stumbles. Trust me,
that feeling is bliss!
I was never much interested in sports as a student and,
while I enjoy a decent game of football or rugby on TV,
I’m still not much taken by the prospect of running
around a pitch. Even I would be on the floor, hysterical
with laughter, at the sight of me trying to maintain a halfdecent run. Thankfully, there were always ways to get out
of participating in sports at school, because I had a very
understanding sports teacher named Mr Grimes. He made
his lessons bearable, and that’s saying a lot.
Today, if you watch me walk down the street, you might
well suspect that I’m a bit on the merry side. The truth
is, I’m annoyingly unable to coordinate my legs. Unless
I really concentrate, I often struggle to walk in a straight
line, and often trip over my own feet. The difference
between me at age 29 and me at age 16 is that I’ve
32
ABILITY
learned not to care about appearances. I’m never going
to be an Olympic runner and the jobs I want to do mostly involve sitting behind a desk. I just wish I had known
all of that at 16.
Back then, I was faintly moody, mono-syllabic and rude
to my parents—in many ways, a typical teenager. But I
was also struggling with something else: trying to understand what was “wrong” with me. I sometimes felt like a
stranger, looking at all these unwritten rules and social
conventions that I often didn’t quite “get.” To me, people
seemed so casual and cool, with their abilities to navigate
through the minefield of life, and I often felt left behind. I
sometimes felt as if I were on the outside, looking in.
This sense of separation from others was difficult to
overcome. I shut myself away for a long time, hating
situations in which I knew the presence of lots of people
would make me feel awkward and tongue-tied. However, over time, with the help of an extremely patient family—and some exceptional friends—I began to feel confident in myself and able to contribute to conversations.
I began to feel at least semi-confident in groups and not
entirely afraid to meet new people. Even now, I have
moments that make me want to hide away, but they are
mercifully few and far between—and people who know
me are miraculously patient!
I’m telling you my story not to get you to feel sorry for
me, but to help you understand that when someone lives
with dyspraxia, all she sometimes needs—and wants—
is a little patience and understanding. I can imagine how
frustrating it must be for people without dyspraxia to try
to make sense of why we’re so clumsy or slow to pick
things up (or sometimes just plain forgetful!) or poorly
organized. All I ask is that you imagine what it must be
like for us!
Even at my adult age, I still get angry with my body
when it doesn’t listen to what my brain is trying to tell
it, or when I try three times to say a simple word that
yesterday I had spoken without so much as a bat of my
eyelids. I can also imagine how frustrating it must be for
my family and friends to see my condition manifest
itself and wonder how it can vary from week-to-week
(and often day-to-day) without any apparent effort.
I wish I could describe dyspraxia in a way that would
allow it to be fully understood. All I know is, this is the
way I am—the way any dyspraxic person is—and even
I don’t know until I wake up what I’m going to be like
on any given day.
I’ll give you an example. Lately, on Sunday afternoons,
some friends and I have gotten into the habit of going
down to our local park and kicking a football or rugby
around, usually just to practice various manuevers.
We’re usually there for a couple of hours, and my
progress on the field over the past few weeks has been
interesting, to say the least. I can go from passable to
terrible and back again in the space of a single session.
A kick over the rugby line can go straight as a die, or so
far left you’d have to track it with satellite. There’s just
no rhyme or reason to my level of ability—my brain
knows perfectly well what it wants to do, my foot just
refuses to listen to orders. It’s as if my brain is playing a
tune, but each part of my body hears a different beat and
decides to just go with the flow.
Over time, I have discovered ways to better manage my
condition. Although I am not deaf, I am in the process of
learning British Sign Language (BSL) to better communicate with some of my deaf friends. It hadn’t occurred to
me, when I’d first started my BSL course, how well
learning sign language would mediate my dyspraxic side.
BSL is all about expressions and emotions. You only
have to watch deaf people communicate at a good speed
in any sign language to see how emotions fly across their
hands, bodies and faces. As a person with dyspraxia, I’ve
not always been conscious of facial emotions, and deaf
people always seem “switched on” to people’s moods in a
heightened way that I admire.
I’m not overly emotive, myself, but I’m not
sure whether that’s just my nature or is
linked to my dyspraxia. I’m always
loathe to blame my condition for
everything. As my BSL classes have
progressed, I’ve become more aware
of my lack of expressive emotion.
To be honest, however, it’s not
something I often worry about. I’ve
become much more empathetic in the
last ten years or so, but I don’t give a
lot of thought to how I project my emotions. However, if I want to progress in
BSL (and I do), then I know I need to
become more conscious of my expressions.
It might not occur to you that emotive expression is
something that I would need to learn at a conscious
level, but that’s simply the truth of dyspraxia—as well
as of other, more “traditional,” conditions that are on the
higher end of the autistic spectrum. I get by with tone,
gestures and some expressions—just to a lesser degree
than is commonly considered average. I’m often told I
look a bit “fed up,” but that’s only because people just
haven’t gotten used to me yet!
By learning BSL, I am acquiring more than just a language. I’m learning the importance people attach to visible emotional states. I’m learning how they can offer
reassurance or emphasis to their words. I always knew
that different levels of emotions can be manifested
physically, but this course is helping me learn how to
read those levels in better ways.
My fourth BSL class was a brilliant lesson in all of
those elements: the myriad levels of emotion that even
someone like me, a person with moderate dyspraxia,
can witness or by which we can be confused. Somehow
these emotional cues don’t seem too scary or odd once
they are broken down into simpler terms. I have to
learn more than just the signs—I have to understand the
expression behind the signs, as well.
As I said, social awkwardness is definitely a part of dyspraxia, and its severity can be affected by the level of the
condition. An understanding of emotions is innate in
most people, but it’s something I’ve needed to learn, usually the hard way! I know I’ve sometimes misunderstood
a visual “cue,” and these moments created a sharp learning curve during my younger years. I imagine all of us
have misunderstood a mood at one time or another, but
that was an uncomfortably frequent occurrence for me.
Fortunately, as an adult, I’ve become more conscious
of emotions—in others, as well as in myself. Being
able to process what I’m feeling, and perhaps able to
project that feeling to other people, is a strange concept with which I’m still not entirely comfortable. But
my BSL classes are having a bizarre and unexpected
impact on me as a person with dyspraxia:
they’re actually helping me become more
comfortable with facial expressions
during conversation.
BSL is a fascinating language, and I
love learning it. It’s as rich and
complex as any other language. Its
swear words (which I learned on
YouTube, not from my class) are
perhaps even more vivid than their
verbal counterparts. Oh, and don’t try
tell me you didn’t want to learn the
swear words for whatever foreign language you learned at school!
If one message might be taken away from this article,
it’s this: don’t be ashamed of who you are. Don’t feel
you have to hide your condition or that, by not talking
about it, it will somehow go away. Taking that path will
just make you feel more isolated and more alone: just
how I felt as a child.
Since I’ve begun talking about my dyspraxia and have
opened up about how it affects my life, I’ve found so
many new ways of dealing with my condition—through
my brilliant friends and wonderful family—and I’ve
also found confidence within myself.
I am dyspraxic. If you are reading this and you think,
“So am I”, please seek out the advice and help that is
ready and waiting for you. Treasure your differences
and know there are other people who understand what
you’re going through. People around you want to help.
We’re all individuals, and dyspraxic people bring their
own interpretation of the world to the table. Let’s celebrate that!
by Matthew Munson
dyspraxiausa.org
ABILITY 33
n the past 18 years, he has spent more than 70 months
in the region, walking for miles on treacherous roads
and sitting in dirt while gently convincing villagers of
the need to educate their children
Through his organization, the Central Asia Institute
(CAI), Mortenson has provided education to more than
68,000 children, including 54,000 girls, and has earned
himself a Nobel Peace Prize nomination in the process.
His journey to educate youth grew out of personal
tragedy and failure—namely, the sudden death of his
beloved sister, and his failed attempt to climb K2, the
second highest peak in the world, in her honor.
Mortenson’s sister, Christa, contracted acute meningitis in Tanzania, where her parents were missionaries,
when she was three and he was 15. After that event,
Mortenson committed himself to becoming his sister’s
protector.
“It would take Christa hours to get organized for
school the night before,” Mortenson said. “She would
do her homework, lay out her clothes, pack her lunch.
But she never complained, and she inspired all of us.”
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ABILITY
While growing up, Mortenson and his sister spent at least
one month together, each year, taking special trips to Disneyland and the Kentucky Derby. After seeing the movie
Field of Dreams, Christa was inspired to visit the cornfield in Deyersville, IA, where the film was made. But on
her 23rd birthday, the day that she was supposed to head
to Dreyersville, Christa died of a massive seizure.
Heartbroken, Mortenson wanted to do something extraordinary to honor his sister’s life. That’s when he decided to climb K2, on the Pakistan-China border, and place
her favorite amber necklace at the summit.
Mortenson spent one year preparing for the climb and,
in 1993, set out with a 12-person team. After 78 days
on the mountain, he turned back to help a fellow
climber who was ill. After ensuring the other person’s
safety, Mortenson took a wrong turn just 600 meters
from the top, and stumbled into a tiny Pakistani village
so isolated and poor, that one in three children died
before their first birthdays. Sick, emaciated and convinced he had failed his sister, Mortenson was nursed
back to health by Muslim villagers. They put the little
sugar they had in his tea, and covered him with their
warmest blanket.
Overwhelmed by that display of generosity, Mortenson felt
compelled to repay the villagers’ kindness. He gave
away the few possessions he had and used his medical
training to treat minor illnesses in the community.
Just before Mortenson left the village, he noticed children writing in the dirt with sticks. The community did
not have a school, Mortenson learned, and could not
afford the daily $1 salary required for a full-time
teacher. He made a promise to return and improve the
village’s circumstances.
To this day, Mortenson says he felt the presence of his
sister in that remote village, particularly when he was
among the children. “Everything about their life was a
struggle,” he wrote in his best-selling book Three Cups
of Tea. “They reminded me of the way Christa had to
fight for the simplest things—and also the way she had
of just persevering, no matter what life threw at her.”
Once back in the United States, Mortenson wrote nearly
600 letters to sports stars and celebrities, in an effort to
raise the $12,000 he needed to build a school. He
received only one check, for $100.
Not to be dissuaded, Mortenson worked double shifts
and briefly lived in his car before selling it and his
mountaineering equipment to raise additional funds.
After his mother, an elementary school principal, invited Mortenson to speak to her students, the children
decided to help. They collected over $62,345 in pennies. Upon securing those funds, Mortenson returned
to the village and built a five-room school in 1997.
Today he continues to honor his sister’s memory by
building schools for girls in northern Pakistan and
neighboring Afghanistan.
I first met Mortenson four years ago, in Washington,
DC, when he was launching the publication of Three
Cups of Tea. Captivated by his story and by his commitment to girls’ education in the country of my origin, I
wanted to see for myself how this soft-spoken, six-footfour Midwesterner was able to navigate within my culture with such grace and sensitivity. When Mortenson
received the Sitara-e-Pakistan (Pakistan’s highest civilian award) in 2009, I had the chance to visit his schools,
meet his local team, and see him in his element.
As we arrived at the Gundi Piran Girls’ School in Pakistan-administered Kashmir, about 20 girls in light gray
shalwar kameezes and maroon shawls were finishing
their exams. Each of the students worked within an
open-air classroom that featured a rectangular dirt patch
and seven gravestones.
Those gravestones serve as a reminder of October
2005, when this school was located near the epicenter
of a 7.6 magnitude earthquake that devastated Kashmir.
The natural disaster had killed more than 80,000 people
and had displaced 3.5 million. Thousands of schools
were destroyed in the quake, and CAI has since rebuilt
several in the area. Today 350 girls attend this onestory, 12-room school that includes a library, computer
room and playground. One of the students, 18-year-old
Sadia, told me she had never thought she would return
to school. Now she is deciding whether to become a
doctor or a teacher.
Mortenson emphasizes that providing children with
schooling offers the best weapon against injustice and
social stagnancy. “You can build roads, and put in
electricity,” he said, “but until girls are educated, society won’t change.” The former mountain climber is
quick to highlight the many benefits of providing girls
with at least a fifth-grade level of education: a drop in
maternal and infant mortality rates, a decrease in population rates, and healthier and more educated families,
as mothers pass on the importance of education to the
next generation.
Education of girls results in other, more unexpected
benefits, as well. When a young man goes on jihad,
custom dictates he must get permission from his mother, and that permission is more likely to be given by
illiterate women. “If you look at the 9/11 hijackers,”
Mortenson said, “you find they were educated.” But
their mothers, he said, were illiterate.
Even in a region in which educating girls is not a priority, Mortenson says he has been able to convince several
conservative elders to educate their daughters, often by
invoking Islam to emphasize the importance of education. “The first word revealed in the Quran is ‘iqra,’
which means ‘to read,’” Mortenson said. “The first two
chapters implore people to seek knowledge.”
For all of its successes, however, Mortenson’s work has
encountered some skepticism, and has even earned him
a fatwa, an unfavorable ruling of Islamic law. Once his
work was assessed by authorities, however, he received
a letter from the Supreme Council in Iran, which read:
“Dear Compassionate of the Poor, our Holy Koran
tells us all children should receive education, including
our daughters and sisters. Your noble work follows the
highest principles of Islam.”
Mortenson says his work is both personally rewarding
and considerably time-consuming. It took eight years to
persuade the local council of one village to allow a single girl to attend school. By 2007, when one of Mortenson’s new schools had opened, there were 74 girls
enrolled. One year later, that number tripled.
Some village elders, however, don’t need to be convinced of the value of Mortenson’s contribution. During
our visit to the Punjab region, we received warm greetings from two members of the village education committee. “The era of not sending girls out of the home is
over,” one of the men told us. “Girls need to know how
to function in society.”
ABILITY 35
Left: Greg Mortenson with Nowseri schoolchildren—Azad Kashmir (earthquake
region), Pakistan.
Below: Lalander schoolchildren in Afghanistan.
One of the village elders, wearing a white kurta pajama and turban, succinctly captured the value of educating a girl: “When one girl becomes educated, then
one family becomes educated. Her children benefit,
her parents benefit, her brothers and sisters benefit.”
Mortenson said that sentiment echoes an African credo
he’d learned while growing up in Tanzania: “Educate a
boy and you educate an individual. Educate a girl and
you educate a community.”
Mortenson says that each time he meets a young woman
with a fierce desire to learn, he finds himself reminded
of his sister. One young girl, Nasreen, who grew up in a
tiny village in the northernmost part of Pakistan, was
known as one of the brightest students in her school.
When she was 12, however, her mother died, which
forced the promising student to drop out of classes and
take care of her four younger siblings and her father,
who is blind.
“When my mother died,” Nasreen said, “all my dreams
went far away.” Nevertheless, she continued to study on
her own. In 1995, at the age of 15, she became one of
the first girls in the region to receive a diploma.
In 1999 Mortenson met Nasreen in her village and
promised to help her fulfill her dream of becoming a
maternal health care provider. His organization offered the
36
ABILITY
teen a scholarship to study in Rawalpindi, a town near
Pakistan’s capital. Today she is completing her medical
assistant degree, and wants to get an ob-gyn nursing diploma. She hopes to work in areas even more remote than her
own, teaching other women what she has learned.
“I am very happy,” Nasreen told me as we looked
through her family photographs. “I’ve been given a
chance to fulfill my dreams. I want to give my children
the best education so they can fulfill theirs.”
For every rupee that CAI invests in building a school,
the recipient village matches the effort by providing
free labor, wood, land, and cement. Those too old or
weak to provide labor make tea for the team or have
their children pay a small tuition. “From day one we
make sure the school belongs to each and every person in the community,” Mortenson said.
Perhaps that sense of community involvement explains
why only one CAI school has been attacked by the Taliban. After that event, the community’s militia leader—
who himself has two daughters in another school—and
a group of other volunteers, defended the school. It
reopened, two days later.
Mortenson believes the keys to the success of his efforts
lie in building relationships, listening to people, and
drinking a lot of tea. “Tea drinking is one of the main
hazards of my job,” he said. He’s sipped the popular
beverage alongside the Taliban, religious clerics, tribal
Sitara "Star" School. Afghanistan.
chiefs, conservative fathers, and nervous children.
As explanation for this unusual bonding strategy, he
quotes a Balti saying he learned from his mentor:
“The first cup of tea, you’re a stranger. The second
cup, you become a friend. And by the third cup, you’re
family.”
Mortenson attributes his unique ability to work between
two cultures to his childhood in Tanzania. “It was a
diverse environment,” he said. “My closest friends were
Muslims and Hindus and kids of all backgrounds.” His
eclectic friendships were the key to his early introduction to Islam. One of his most potent memories involves
climbing to the top of the minaret to hear the muezzin
announce the call to prayer. “Islam is about tolerance. A
few people have hijacked this.”
boy couldn’t speak and was hard of hearing. Within
moments, the educator picked up some stones, held them
in his palm, and began to give the boy a math lesson.
by Salma Hasan Ali
gregmortenson.com
Mortenson was near the Afghan-Pakistan border on
September 11, 2001, and still remembers the outpouring
of sympathy he received from villagers after the terrorist
attack in New York City. “Little old ladies brought me
eggs to give to widows in New York,” Mortenson said.
As a companion to his efforts to spread education and
literacy, Mortenson works to dispel fear and divisiveness wherever possible. “The real enemy is ignorance,”
he says at the end of each of his talks, “and it’s ignorance that breeds hatred. To overcome ignorance, we
need to have courage, we need to have compassion and,
most of all, we need to have education.”
On our last day in Pakistan, Mortenson and I visited a tea
house to celebrate his reception of the Sitara-e-Pakistan.
Without introduction, a young boy, perhaps eight years of
age, sat next to us, on the tottering wooden bench. The
ABILITY 37
38
ABILITY
n a surprise move, OWN awarded both
Anner and co-finalist, Kristina KuzmicCrocco, their own series. Anner, who has
cerebral palsy and uses a wheelchair, is now
poised to unveil Rollin’ Around the World with
Zach Anner, a humorous travel show that will
see him cross the globe. Anner won $100,000
from Kohl’s (sponsor of Your Own Show), as
well as a new car. ABILITY’s Chet Cooper caught
up with Anner before his move out to Hollywood.
Cooper: Were you considered a problem child in school
because you were such a joker?
Anner: Sometimes. I remember a time when my first
grade teacher wanted us to tell her the classroom
rules—like sharing and no fighting and that sort of
thing—and I raised my hand and said, “No French kissing the teacher.” I got in trouble the first day of school. I
had to be on my best behavior the entire year, because
I’d made such a horrible first impression!
Cooper: Congratulations on the new show! Are you
going to be filming out of Austin or Los Angeles?
Cooper: You’re saying your teacher actually didn’t want
that to be a rule?
Anner: Thanks! I think we’re going to be based out of
Los Angeles, but we’re going to be visiting a lot of different places because it’s a travel show.
Anner: I thought it was a pretty safe rule, right? And I
think she agreed with the principle—just not with my
expression of it.
Cooper: So you’ll be living out here in California while
you do the show?
Cooper: I don’t think I knew what French kissing was in
first grade.
Anner: A lot of things are still up in the air, but it would
seem to make sense to do that. I’d be open to it, because
Los Angeles has In-N-Out Burger. That really is a big
draw for me. I could float through space in an In-N-Out
Burger and that would be cool with me.
Anner: I didn’t know, either. I’d just assumed you
weren’t supposed to do it with your teacher.
Cooper: (laughs) Tell me about your new travel program. What can we expect to see?
Anner: We want the show to offer a mix of the places,
the people, and the logistics of travel, with humor overarching it all. And a good amount of heart, too. I think
it’ll be fun.
Cooper: You’ve already proven you have the gift of humor.
Anner: My parents and my brother instilled in me my
sense of humor. That’s kind of the way we communicate
with each other, and it’s always been a way for me to
get to know people. Depending on where my self-confidence was, growing up, I would use humor either to
bring people closer, or to keep them away from certain
feelings I had.
Humor disarms people. It opens them up to starting a
dialogue about things they wouldn’t normally talk
about. I don’t understand how people who don’t have a
sense of humor get through life. Even when something
sad or tragic happens, I find a way to look at it in a positive light. People who don’t have a sense of humor must
be so sad all the time.
When you’re growing up—and occasionally when you
have a disability—a lot of embarrassing things sometimes happen to you, and it’s really great to be able to
say, “This will be so funny later! This is all great material that I have, this life that I’m living.”
Cooper: I’d forgotten about your disability.
Anner: If we don’t talk about it, that’s awesome, because
that means we’ve got other things to talk about. But yeah,
it’s definitely part of who I am.
Cooper: I think one of the reasons I loved your YouTube
videos is that you don’t do disability-specific humor.
Anner: A lot of times people expect me to make jokes
solely about my disability. My perspective is: what would
I really want to do if I weren’t in a chair? There are a lot
of things I love to do that have nothing to do with my
cerebral palsy (CP). I define myself as a goofball first.
That really opens people up. They say, “This guy’s making jokes that really don’t have anything to do with him
being in a chair.” So that was always the key. I don’t
wake up and think of myself as somebody who has CP.
I’ve always wanted to be a filmmaker. I want to be a
comedian. I don’t see the need to dwell upon elements of
my life I can’t control. Cerebral palsy is just one of those
ABILITY 39
Left: Zach and his older brother
Aarau have a bonding moment.
things I was born with. We’re all born differently, and
this is my difference.
Cooper: The guy who writes our “Humor Therapy” section happens to be a quadriplegic. Every so often he
does some disability-related stuff, but most of his work
is just straightforward humor.
Anner: Talking to other comedians is always nice. Arsenio Hall was on the Oprah show with me and was the
funniest guy. It made me wonder why he doesn’t still
have a show of his own. It was so cool to be able to riff
off of him and feel the rapport.
Zach found and developed
his sense of humor at a
young age.
Jon Stewart does a great job, too. What I love about The
Daily Show is that each of the talents there thinks of himself or herself as a comedian first. They make really intelligent political points and people listen, because the audience thinks, “These guys are comedians.” So The Daily
Show can make the sharpest points without having to,
necessarily, own up to the responsibility of the opinion.
That’s really smart. Also, they usually look at things
objectively, rather than always being on the party line.
That’s the way you make progress.
Cooper: You sound like you could be on your way to a
political career with that comment.
Anner: I’d rather focus on what everybody has in
common, instead of on polarizing issues.
Cooper: You made a polarizing comment when you said
cerebral palsy is the sexiest of the palsies. We’ve got
one woman here who has Bell’s palsy, and she’s really
upset with you!
Anner: I stand by my position. I know some sexy people
with Bell’s palsy and, while there’s room for both of us,
I come out on top in sexiness. How many palsies are
there? I don’t even know. I need to know whom I’m up
against. Does Drew Barrymore have Bell’s palsy? I find
her very attractive.
Cooper: We’ll have to check on that. Tell me a little bit
about your vision.
Anner: You mean my vision for the show, or my
wandering eye?
Cooper: Yes.
Anner: (laughs) Well, when I was born, my eyes were
crossed. When doctors performed eye surgery on me,
they overcorrected, and so that’s why my eyes all over
the place. I don’t have much depth perception, unless I
really focus. It’s something I would like to work on,
actually, because eye contact is important during interviews, and I never have it with anybody.
Cooper: Do you have a driver’s license?
40
ABILITY
Zach answers questions as a contestant on Oprah Winfrey’s Your OWN Show.
Anner: Oh, no. I wouldn’t want one! My startle reflex
is really exaggerated. That means if someone pulled
out in front of me I’d probably freak out and murder
somebody’s lovely little grandma. It would be terrible.
I would want to sign a contract that said I wouldn’t be
charged with criminal misconduct for the first five
animals I accidentally run over.
Cooper: Five animals and one grandma.
Anner: (laughs) I did once go through a test to evaluate
whether or not it would be safe for me to drive, and the
answer was a resounding “no.”
Cooper: Have you gone on any amusement park rides?
Anner: (laughs) Yes! When you’re in a wheelchair, you
get to go to the front of the lines, which is the biggest
perk for me. I would love not to have CP, but when I’m
in those lines I feel like the luckiest guy in the world
because I get to ride the roller coaster 10 times! That
would be a hard thing to give up.
Cooper: What hobbies do you have?
Anner: In Austin, my life is kind of consumed with film
stuff. I make a lot of shorts, and my friends and I have a
show called “The Wingmen,” which is a mocumentary
web series that’s all improv. We’re just always trying to
think of little movies or features to do. That takes up
most of my time.
Cooper: Under your deal with OWN, will you still be
able to do other projects?
about letting me continue to do the silly things I do.
This show is the opportunity of the lifetime, so I’m
down for whatever.
I talked to somebody from NBC who said the network
was excited because it had a pilot completely made up
of people in wheelchairs. And I was like, “Well, you
don’t really need to hit that issue over the head. Your
show doesn’t need to be all people in wheelchairs. It
doesn’t even necessarily need to have a character who’s
there because he’s in a wheelchair.”
Cooper: Exactly.
Anner: If there’s an actor the network likes who’s
qualified and who brings something to a character,
there you go. The idea shouldn’t be, “we need this guy
because he’s got this.” Does he bring something to the
role that nobody else does, wheelchair or not? You
want to make sure that people are seeing the person,
not the devices or other issues.
When I do my “Wingmen” show with my friends, we
don’t even address the wheelchair. It’s not something
that, when we’re writing or thinking up stuff, we necessarily even incorporate because it doesn’t really register to us as a big deal. But when we show our work
to an audience that hasn’t known me, the audience is
like, “Why aren’t they addressing the chair?”
Cooper: That’s actually something that happens with
this magazine, also. People will say, “Why is Kathy
Ireland on the cover? Your magazine deals with disabilities, doesn’t it?” It does, but you need to read
between the lines of what we’re talking about. We build
that topic into the fabric of the article.
Anner: I hope so. OWN has been really, really cool
ABILITY 41
Zach wins his OWN show, along with co-finalist and
winner Kristina Kuzmic-Crocco, another finalist
Anner: I’d love to talk to somebody who’s
more connected with the disability community than I am. I’ve caught some flack, at
least a little bit, because of my use of language. On my audition tape I referred to
myself as a “wheelchair-bound ladies’ man.”
Cooper: I could see why they had a problem
with that.
Anner: Sure, but it was just a phrase I’d
thought was funny. I caught some flack
about not using person-first language. I’ve
got to be honest, I get the sentiment and
everything, but I feel like that should be a
personal choice. If we all have to say the
same thing, it just feeds into the idea that
we’re all the same.
Cooper: For years the disability community
has been trying to change the attitude
around certain language. When someone
says “wheelchair-bound,” it’s suggesting,
“I’m bound to a chair.”
Anner: If I’m using a personal expression,
that helps people see me as a person first,
maybe more so than they would if I’d just
gone with the accepted phrase. I mean no
offense to anybody, and I understand the
sentiment behind the concern, completely.
But I think, a lot of times, political correctness closes off dialogue. It makes people
afraid to ask questions because they’re afraid
if they don’t word them the right way, someone will take offense.
It’s about intention. People who haven’t been exposed to
people with disabilities—and who don’t know what to
expect—are, of course, going to have misconceptions. So
I take it upon myself to connect with them in a way that
makes disability easier for them to comprehend.
Cooper: When I’m in a conversation with someone who
uses a term like “handicapped,” I don’t correct them, but
I might say, “Yes people with disabilities…” I use the
correct language, but I don’t beat anyone up if they don’t.
And for those who are paying attention, they may try out
that new language the next time they’re in a conversation.
42
to treat a certain race or group of people, and these are
the things you’re supposed to say and not to say,” that
closes off the issue, in my mind.
Cooper: A lot of the concern about language comes
from employment issues. We want companies to have the
understanding that the talent pool of people with disabilities is a large one. The more the language conveys
disability first or suggests, “you’re confined to something,” the more difficult for employers or anyone, for
that matter, to focus on ability rather than on negative
stereotypes.
Anner: I just don’t want people to feel like they’re going
to be judged if they ask me a question that’s maybe politically incorrect. I would just like for people who have
questions to ask those questions openly and freely and
not worry about being judged for wording. Then a dialogue can begin and we can have an open discussion.
Anner: I’ve always wanted to have a deeper understanding of where those concerns come from. I was exposed
to other people with disabilities, obviously, but those
disabilities were never at the forefront of what I was
pursuing. So I live my life, and when people come into
it, obviously they would have a certain perception of
me, in the beginning. Then as people got to know me,
that perception would change.
As members of the human race, we all have questions
about each other and about each other’s differences. If
we make a mandate about, “This is how you’re supposed
I’ve had such an outpouring of support from the disability community, and I didn’t even realize that the idea of
this show would affect people so deeply. It was just
ABILITY
something that I’d always wanted to
do, and I thought it would be a great
idea. I thought people would have a lot
of fun watching it. So to hear so many
stories, to have so many people writing
me, has really opened my eyes.
Cooper: Did you hear much about
Christopher Reeve when you were
younger?
Anner: Of course. I was really
inspired by his belief that all things
are possible.
Cooper: For a good while after his
accident, Christopher Reeve talked a lot
about finding a “cure” for spinal cord
injury, which really angered a lot of
people in the disability community. It
suggested to them that without the ability to walk, people were not whole. When
I got a chance to talk with Chris, I told
him why people were concerned about
that, and he got it. Today his foundation
gives out grants not only for research
on spinal cord injury and other disabilities, but also “quality of life” grants—
grants that put money toward disabilityrelated issues in a general sense, not
just toward a “cure.”
Anner: That’s really interesting. I think
if I had the opportunity to walk, I’d
accept it. I don’t know if it’s in the
cards for me, but I don’t think there’s
anything wrong with me the way I am,
obviously.
I have conflicting feelings about it,
really. If a person has lived a certain
way and then all of a sudden can’t
move his legs or do the things he used
to do, that probably changes his perspective. For me, personally, I’ve
never really felt “disabled”. I was born
with cerebral palsy, and I grew up in an
environment in which no one made a
big deal of it. So it’s been really, really
interesting to hear all the different perspectives.
My disability has shaped who I am and
my entire outlook, but I’d also probably try living without it, just because
I’d like to take up swing dancing
sometime. This is all so hypothetical,
though, that we can never really expect
an answer.
ABILITY 43
Zach interviews celebrity judge/mentor Gayle King on this episode of Your OWN Show: Oprah's Search For The Next TV Star.
Cooper: For some members of the deaf and hard of
hearing community, the choice of whether to hear or not
to hear is a real one. Because of cochlear implants, they
actually do have the option of becoming part of the
“hearing” world. Some people who get the implants are
perceived as “jumping ship,” and lots of people within
the deaf community get upset when a person makes that
choice. They argue, “God doesn’t make mistakes. We
have our own community and our own language. I’m not
a mistake, and therefore I don’t need to alter who I am.”
become a rock star in the disability movement.
Anner: I just want to be a guy who’s really good at his
job, regardless of the fact that I’m in a wheelchair. I
hope that my show is a fun experience for everybody,
no matter where they’re coming from.
Cooper: I remember in one of your videos, you were
being carried up to a hilltop—
Anner: (laughs) Yeah, Mount Bonnell.
Anner: It’s so interesting how many different ways
disability can be interpreted.
Cooper: What did you say to the camera when you were
being carried?
Cooper: Did you ever go to camp as a kid?
Anner: I used to go to a special summer camp, yeah.
Some kids there had CP, other kids were blind or deaf.
The person I most connected with was a guy who was
deaf. Learning how to communicate with him without
sign language was an awesome experience. Our desire
to communicate made our friendship so much stronger,
because we really had to figure out a way to talk to each
other. So that whole cochlear implant debate is interesting, because if I could have something that might make
it easier for me to communicate with a large population,
I would probably take it. My principle has always been
that I’m just going to be myself and be true to myself,
and change will come from that. But I understand there
are a lot of other elements that come into play.
Anner: I said, “I hope this doesn’t affect my mojo, being
carried by two dudes.” [laughter] My friends are the
coolest in the world. It was, like, 95 degrees that day.
Cooper: You were so funny when you were trying to give
a hug to a couple of girls, and one actually darted away
from you.
Anner: We edited that to make it look as pathetic as
possible. We’d heard that place was, like, the make-out
capital of the world, but when we got to the top of the
mount, there were only six people. We were like,
“We’ve got to make this funny somehow, because
we’ve come all this way.”
Cooper: It sounds like you have a great team.
44
I see a lot of parents of children with disabilities. Many
of them dedicate themselves to that cause so deeply that
the disability becomes their life. That’s an approach my
parents shied away from. But I would love to meet with
everybody and get more plugged in to what’s going on
with the disability movement.
Anner: I was so lucky to find that group, yeah. Obviously, I can’t do all of the physical aspects of filmmaking,
myself. I can’t shoot video as well as someone else can.
But to have an idea, and then to have people to bounce
ideas off of, has been priceless.
Cooper: They’ll be coming to you, too. You’re going to
Cooper: Did you go to college?
ABILITY
Anner: I went to University of Texas and studied radio, television, and film.
I haven’t graduated yet. I took some time off to film some things, and there
was a financial problem, too, because I’m an out-of-state resident, even
though I’ve lived here for five years, so the tuition was kind of expensive.
But I’d like to go back and finish, because all I have left is Spanish and
math and those types of things. I definitely want to finish.
Cooper: What do your parents do?
Anner: My mom is a professor at the University of Buffalo. She teaches
theater and playwriting. That’s probably who I got my creative spark from.
My dad is a bartender who also did videography, so entertainment is kind
of in my blood. Before I moved to Texas, I worked at Disney World and
loved it.
Cooper: Did you joke around a lot with the Disney World guests?
Anner: Yeah. I always bought into the magic of Disney. That was always
my big thing. I would always tell people I had the best job in the universe.
Lots of fireworks every night, and then afterwards I’d go around the park
and tell everybody to get out. It was fantastic. I even gave some people
rides on my chair.
Disney World is really the most accepting environment ever. I was nervous
about the job at first, and living in Florida was the first time I’d been away
from home. But Disney World was completely accommodating to whatever
I needed and to whatever I wanted to do. It was the perfect bridge for me
between home and college.
Cooper: Have you ever done any writing?
Anner: I’ve had a couple of offers to do books, but it’s hard for me to get
into that mindset because I don’t really type. By the time I’ve managed to
type what I’m writing, I’m already editing it in my mind and changing it.
Cooper: I have a simliar problem. Once I get to the computer, I’m dealing
with dyslexia, my fingers aren’t typing what I’m thinking.
Anner: David Sedaris is one of my favorite authors, and I’d love to collect
stories from my life the way he does. I’m only 26, though, so I haven’t
lived much yet.
Cooper: Have you tried any sports? Have you surfed?
Anner: I haven’t, but I love the ocean. Rolling around in the waves is one
of my favorite things to do.
Cooper: You definitely should give surfing a try. Maybe that could be part
of one of your episodes. You don’t need to stand up for it.
Anner: Oh, yeah! I’ll bring that up.
Cooper: Are you busy pitching ideas for other shows?
Anner: We had a development deal for “The Wingmen,” and we thought
we might get picked up and go to series. It’s a long process, though. I
think now, especially, people are scared to commit to anything. I’ve been
really, really lucky with what’s happened to me. It’s exciting.
therealzachanner.com
ABILITY 45
46
ABILITY
Photos by Nancy Villere - CrushPhotoStudios.com
ince losing his sister Gay to scleroderma, Saget has served on the
Scleroderma Research Foundation’s board of directors, and today
hosts the organization’s charity-packed benefits around the country. He sat down with
ABILITY’s Chet Cooper and Regina Hall to
discuss his upcoming benefit, “Cool Comedy/Hot Cuisine,” and shared insight into how
he managed to keep laughing in the midst of
family tragedy.
Chet Cooper: Thanks for meeting with us.
Bob Saget: I thought this was Alimony Magazine! That’s why I agreed to the interview. I
didn’t know this was actually called ABILITY.
Cooper: Half of the article will be about
alimony.
ABILITY 47
Photos by Nancy Villere - CrushPhotoStudios.com
Saget: You’ll need to interview people I’ve split up with.
Regina Hall: That’s why I’m here!
Saget: Yes. My future ex.
Cooper: How did you find your way into the entertainment business?
Saget: Oh, my career is very sordid and hard to pin
down. I started making eight-millimeter movies when I
was nine. Later I made 60 hours of really bad student
movies. I realize “really bad student movie” is redundant. Anyway, I went to Temple University film school
and made an 11-minute documentary, called Through
Adam’s Eyes, about someone to whom I’m very close
who had reconstructive facial surgery. It won a Student
Academy Award.
I did a lot of filmmaking around that time, and I’d take
the train into New York from Philadelphia, where I’d
started winning radio contests as a stand-up comic. At
17, I performed at The Improv. And then at 21, I moved
to Los Angeles to go to USC film school. I quit school
after three days. I figured I’d already gotten my undergrad degree, anyway. So I went back into comedy, performing at The Comedy Store and The Improv.
Cooper: So if someone is planning to follow in your
footsteps, he or she should only go to grad school for
three days.
48
Saget: That’s what this is all about: giving. (laughs)
Anyway, I decided to give most of my money to the
Comedy Store and The Improv. I found work right away
as a comedian, and I also studied acting. I did the
Groundlings workshop for a year, where, again, you pay
them. Kevin Costner and Barbi Benton were in my first
Groundlings class, which should give you an idea of
how long ago this all was.
Cooper: Barbi! I haven’t heard her name in a long time!
Saget: She was funny. We did a lot of improvisation
involving sex and drugs. Of course, that stuff still takes
up most of our lives now.
Cooper: Sex, drugs, and alimony!
Saget: Right! The first thing I ever did of consequence
was a Richard Pryor movie called Critical Condition.
Then I got a PBS TV show called The Morning Program, which went up against Good Morning, America. I
did that for about five months and was fired.
After that, I got Full House, which I did for eight years,
and then a year into that, I was asked if I wanted to host
a clip show of people getting hit in the nuts—so I did
America’s Funniest Home Videos for eight years.
Saget: (laughs) Well, the Comedy Store had offered to
pay me nothing for eight years!
I was working 80 hours a week at two very commercial
shows, both of which were family friendly. At the end
of Full House, I directed an ABC television movie
called For Hope, which is still run on Lifetime. It
starred Dana Delany and was based on my sister, Gay,
who died of scleroderma.
Cooper: (laughs) Can’t say no to that!
Cooper: How old was Gay when she died?
ABILITY
L to R: Chet Cooper, Bob Saget and Regina Hall
Saget: She was diagnosed at 43, and died at 47. Before
that, she had been misdiagnosed many times. Unfortunately, rheumatologists in a lot of places don’t have very
many scleroderma patients come through their labs, and
no one knew what to do with her. I wish I’d known then
what I know now.
Hall: My mother has scleroderma. At first the doctors
had thought she had lupus.
Saget: Yup. That’s how it was with my sister, too. The
doctors put her on cortisones, which make a person
nutty. My sister had a psychotic episode, and I put that
in For Hope. That was a crazy time.
Anyway, I then moved to directing television for about
four years, while continuing to do stand-up. I’ve been a
stand-up comic now for 35 years. So now I’m on tour
and I have a new show.
Hall: And you’re a complete dirty-mouth.
Saget: I do talk ill. If you see me on HBO or Comedy
Central, you know that. But talk about filthy: I directed
a movie four years ago called Farce of the Penguins,
which Sam Jackson narrated. Christina Applegate,
Tracy Morgan, Lewis Black and Mo’Nique were the
main voices.
Mo’Nique and Tracy had sex in the film, as penguins. I
wrote a song for the film called “He Loved Her in a
Way I Never Did,” which was really filthy.
Cooper: You don’t seem to shy away from anything taboo.
Saget: After a lot of tragedy comes gallows humor.
Even in the TV movie I did, For Hope, the first half-
hour of the TV movie was really funny, but it also
helped raise awareness of this disease that affects
hundreds of thousands of people.
It’s actually not even known how many people are
affected, because there are so many other ways scleroderma can morph. There are many different ways a person can get it. I first found out about scleroderma when
I was asked to do a benefit, before my sister got sick.
Cooper: That’s a weird coincidence.
Saget: Nobody knew about the disease at that time.
Rosie O’Donnell, Ellen DeGeneres, and myself all got
involved in the benefit, but this was 25 years ago, and
none of us had any real television life to speak of.
Sharon Monsky, who founded the Scleroderma
Research Foundation, organized that benefit.
There’s also a Scleroderma Foundation, and we’re separate from them, but one of the Scleroderma Foundation
board heads is also on the Scleroderma Research Foundation board. We’re all basically trying to cure the same
thing. Our organization has raised $25 million for
research. Our chairman, Luke Evnin, is an amazing
man, and lives up in San Francisco with his wife, Deann
Wright. They’re both brilliant scientists and doctors.
Dana Delany’s on the board, Caryn Zucker, Kristen
Baker Bellamy, who lost her mother to scleroderma, and
is married to Bill Bellamy. Robin Williams worked our
first benefit. A number of celebrities sign on, which
helps to give the disease a higher profile. As you may
know, Regina, a significant number of the people who
get scleroderma are African-American.
Cooper: Was your sister black?
ABILITY 49
Saget: (laughs) If it will help raise money, yes. My
black sister and my white sister passed away from this
disease, but my Asian sister is still on the fence.
During the times I’ve been to Washington, DC, to lobby,
I’ve seen everybody fighting for their own causes.
They’re like, “Why are you giving money to that foundation? Don’t give money to cystic fibrosis! We have to
help multiple sclerosis!” They’re all competing for
national funds, but we’ve resolved that issue because
we’re privately funded.
Hall: Do you find it’s harder to get funding to fight a
disease that predominantly affects women, many of
whom are black?
Saget: We believed that for a while, yes. I’d like not to
believe it, personally. I’ve met so many people—
including Jeff Mace, one of our board members, and a
50
ABILITY
brilliant lawyer—who have the disease. I’ve met a lot
of men with scleroderma.
Fortunately more people now than ever are in remission, thanks to advances in the drugs. I just hosted a
thing for my heart doctor at Cedars Sinai, where
researchers are rebuilding the heart with stem cells. The
progress in science is amazing.
Cooper: Do you know if the centers you fund share
their research? Sometimes all this money goes into the
research and development, and then no one shares the
information.
Saget: There is some clashing here and there, sure, but
our research is shared. Everything is about the research.
I don’t care about anyone’s quality of life but my own.
[laughter] I hurt my knee, I hurt my toe, my hair’s
messed up. I’m having some problems of my own. I
can’t even ride a motorcycle with a
guitar anymore.
Seriously, though, we’ve really done
some amazing stuff. My part of the
effort has been to host benefits that
raise consciousness and make a lot of
money. Robin Williams has done our
event six or seven times, and Dana
Carvey is doing our San Francisco
event on May 4th, at the Palace Hotel.
One year, Dana performed, walked
offstage and bid ten grand on a painting that I don’t even think he wanted.
This May, Counting Crows is going
to perform. At the last event we did
in New York, I had Brian Regan,
Seth Meyers, Brian Williams, Jeff
Ross and Jerry Seinfeld. Jerry said
yes within a week. We raised
$700,000 at Caroline’s. We did an
event in Los Angeles a couple years
ago, and I asked John Mayer to perform. He said yes within a week.
I am such a starf--ker, I can’t even
tell you. For a lot of people who do
my benefits, I agree to do their benefits, too. It’s great because you know
you get to help people in a real way.
There’s such tragic stuff out there.
Cooper: It must feel good to know you’re having an
impact and raising awareness.
Saget: Absolutely. I filmed documentaries of 15 to 20
patients, all of which are up on the Scleroderma
Research Foundation website. One is called “Changing
Lives,” another is called “Moving Forward.” In all of
them, I’m just talking to patients. But when I’d gone
back to interview the same patients again, two years
later, about a third of them weren’t there—either they
couldn’t make the trip or they had passed away.
A beautiful Georgetown student came to one of our benefits in New York. This amazing girl, who was only 18,
got up and gave the most moving speech. Afterward, I
interviewed her at Johns Hopkins. The next year, before
we did the benefit, I learned she’d passed away just
three weeks after the night she’d spoken to the crowd.
Hall: Wow.
Saget: I’ve met so many people with this disease. I did a
show two nights ago, in Tampa. This woman is there and
immediately I know she has scleroderma, because scleroderma has a look. The tightening of the skin almost
makes it look as if you’ve had a facelift. Some people
say Lot’s wife had scleroderma, the way she turned to
stone, but I think she was just tired of him. [laughter]
Anyway, this young lady gave me a thank you note. She
had gone to Fred Wigley, a fantastic doctor, and she told
me she was now in remission. If you’re diagnosed with
an orphan disease like scleroderma, go where people see
a lot of scleroderma patients. Normal rheumatologists
don’t see many—they’re busy saving millions of people
with lung issues.
I know a few people with scleroderma who’ve gone to
doctors who specialize in treating it, and they’ve been
led into remission. For them, the disease has just
stopped. There’s nothing more rewarding than that.
Cooper: In addition to the passing of your sister Gay,
have you had much experience with loss in your family?
Saget: My mother and father lost four children. All I
saw was death.
Cooper: You lost three siblings?
Saget: I didn’t know the two who had been born before
me. The boy had been given my name, two years before
I’d been born. I had another sister who died of a brain
aneurysm at 34. So please come back to me for the brain
aneurysm issue!
ABILITY 51
Photos by Nancy Villere - CrushPhotoStudios.com
Saget's not a motorcycle rider, but he plays one
on TV. In Strange Days With Bob Saget, which he
also executive produces, the comedian 'parachutes down into a world' to learn about it., which
finds him riding 1,200 miles with a motorcycle
gang, kicking it in on the pro-wrestling circuit, and
joining a fraternity at Cornell University.
Playing his guitar and singing tunes with spicy
lyrics are part of Saget's comedy arsenal.
Hall: I saw your movie, For Hope, and I didn’t know it
was a true story until the end. It was just a good movie.
And then, later, I read an article in Vogue about a
young woman who had gotten a flu that ended up
affecting her heart. The woman’s organs hardened, and
she discovered she had scleroderma. About two weeks
after I’d read that, my own mother was diagnosed.
Saget: Wow. That’s really strange.
Hall: I suppose it’s sort of similar to your involvement
in scleroderma before you’d realized your sister had it.
Saget: I had gotten involved because of Sharon Monsky. She was such an inspiration. I remember there
was a drug that was supposed to make a patient more
elastic, and it was going to be discontinued. But
Sharon went to the people who made the drug and
said, “You can’t discontinue this.” They didn’t, and
they sent it to her for the rest of her life, which was
about another 15 years, I believe. Sharon had scleroderma for 20 years, and had these three amazing kids.
Her widow’s a dear friend of mine. He also contributes to the foundation.
article comes out. I’m in a serious relationship with you
now. [laughter] Regina told me I have a cute butt. Have
you done a colonoscopy issue?
Hall: When my mom was diagnosed with scleroderma, I
was very scared, and Bob called me and gave me so much
information. I had seen his movie, and I’d only heard
about the worst cases of scleroderma. There’s no cure for
it, so you automatically think of it as a death sentence.
Anyway, Bob called me and told me about Dr. Wigley.
My mom lived in Washington, and Dr. Wigley is in Baltimore at Johns Hopkins. My mom’s goes to see him every
six months. Dr. Wigley can see if the disease is progressing by looking at my mom’s capillaries and their amount
of redness.
Cooper: Is redness a result of the inflammation?
Saget: The system attacks itself, like any other flesh-eating kind of virus. Scleroderma is hardening of the skin.
Derma is “skin” and sclero is “hardening” in Greek.
Hall: My mother’s not on any medication right now.
She’s doing well.
Cooper: Do you have kids of your own?
Saget: I have three. And hopefully more by the time this
52
ABILITY
Saget: She needs to keep warm. Cold is really, really
bad for people with scleroderma. You should talk to
Luke Evnin about it. He has the disease and is a scientist
and a genius. He runs MPM Capital, and his company
invests in pharmaceutical corporations.
Cooper: Did he do that sort of investing prior to having
scleroderma?
Cooper: What’s your latest undertaking, career-wise?
Saget: I’m doing a new TV show the network says I
can’t talk about yet. But I did a show on A&E this past
year called Strange Days. I rode motorcycles.
Cooper: I’ve heard you’re a really good motorcycle rider.
Saget: You get involved with the disease when you’re
touched by it, whether scleroderma hits you or someone
close to you. Luke got involved with the cause and
became familiar with it before he was diagnosed.
Hall: I’ve never met a man who has it, but I’ve met
several women.
Cooper: It generally strikes during the child-bearing
years, right?
Saget: Right. A lot of people haven’t survived it. What I
would advise people do is go through our website and
find a center of excellence where these professionals see
thousands of scleroderma patients.
Cooper: Your organization funds work being done at Harvard, Stanford and Johns Hopkins. What about UCLA?
Saget: There’s nothing in Southern California, because
that region has its own way of doing things. I can recommend a couple of doctors who work out of UCLA,
but because of what happened to my sister, I would recommend one of the few specialists who sees lots of
patients, along with a local rheumatologist. I wish I
could’ve sent my sister to Dr. Wigley. I also would have
gotten her a rheumatologist here in Los Angeles,
because there are a couple great ones.
Hall: The great thing about Dr. Wigley is that he will
never not accept a new patient.
Saget: The man takes calls all night long! Patients have
his cell phone number. His wife doesn’t love it. [laughs]
Our foundation, for the past 20 years, has funded a lot of
different centers. The tests continue as long as the funding does. You run your tests, you give a couple hundred
thousand, and maybe you can do a $1 million grant.
That’s a lot of dough a lab can use to continue its work.
When I did a second round of interviews at Dr. Wigley’s
place, I couldn’t believe how much more staff he had
gotten and how much bigger his place had become.
When I see how Dr. Wigley helps people, I know my
sister didn’t have to die. I think she was dealt a bad
hand. My sister was fouled by people. You want to go to
a place that has expertise. I know people who are HIV
positive and who are doing very, very well now, but
they wouldn’t have been 10 years ago. And I hope that
sort of progress continues, because science always has
new problems to deal with. Your magazine is always
going to have a cover story, unfortunately!
Saget: I’m fantastic. (laughs) I actually joined this
motorcycle club called Iron Order, and rode from
Nashville to Daytona. I got in and out of a sidecar at 80
miles an hour. I was, like, two loose greasy bolts away
from being hurled into oncoming traffic.
Hall: I don’t know anything about sidecars, Bob, but I
want to say thank you for the work you’re doing. You’ve
really touched my family.
Saget: I’m honored. I just hope the photographs you
took of me come out okay. I have a vampire-like quality.
Cooper: Photoshop. [laughter]
srfcure.org • scleroderma.org
SCLERODERMA
The word “scleroderma” is Greek for “hard skin”. Tightened skin is the most visible characteristic of the disease. Scleroderma, which often affects a person’s internal organs, can have life-threatening consequences.
Depending on the subtype of the illness, this disease
can do great damage to the lungs, kidneys and gastrointestinal tract. Damage to peripheral vasculature can
result in loss of digits or limbs. In some cases, joints and
muscles are also affected, resulting in a loss of mobility.
Scleroderma falls into several different disease categories. It is a vascular disease that can constrict and
injure tiny blood vessels. It is a connective tissue disease that can cause abnormal changes to skin, tendons and bones. Like many other rheumatic disorders,
scleroderma is believed to be an autoimmune disease
because it seems to trigger the body to make antibodies against itself.
The symptoms and severity of scleroderma vary from
person to person, and the course of the disease is
often unpredictable. The number of women affected is
disproportionately high—some estimates suggest that
as many as four out of every five patients are female.
The disease most often strikes people between the
ages of 20 and 50; however, children and those above
age 50 have also been known to be affected. Scleroderma crosses all ethnic groups.
There is no way to prevent scleroderma, and there is no
cure. Treatments are available for some, but not all, of
the most serious complications of the disease. Current
modes of treatment include chemotherapy drugs,
vasodilators and ACE-inhibitors, and medications that
modulate the immune system. Most treatments act to
slow the progression of the disease and limit damage,
rather than arrest it. Some drugs currently used in treatment of scleroderma can have serious side effects.
ABILITY 53
t 33, while raising an infant daughter and toddler son, Wolff received a bone cancer diagnosis that led to her leg being amputated above
the knee. Seven years later, she endured invasive breast cancer and a mastectomy. Then
doctors delivered more bad news: they suspected her cancer would return within a year.
Though a junk-food addict at the time, Wolff had heard
rumblings that plant-based diets could improve your
health. Rather than follow her physician’s advice to
“make her peace with God,” she replaced processed
food with whole grains, beans and vegetables. As each
month passed, she felt healthier and stronger. Now 53,
Wolff has been cancer-free for 12 years. She lectures on
maintaining a healthy lifestyle around the country,
teaches cooking classes, and regularly writes on the subject of healthy eating for The Huffington Post.
Her first cookbook, A Life in Balance: Delicious, Plantbased Recipes for Optimal Health (Down East Books),
features easy recipes, along with cooking-related tips. T.
Colin Campbell, PhD, the world’s leading plant-based
diet expert, provided the foreword, while everyone from
veganist Kathy Freston to former NBA champ John Salley contributed their favorite recipes. Twenty percent of
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the profits from the project will benefit Share Our
Strength, a non-profit group working to end childhood
hunger.
“A plant-based diet is simply a way of eating that’s
based on meals filled with whole grains, such as brown
rice, millet, barley or quinoa (keen-wha), a variety of
beans and bean products and a plethora of fresh vegetables,” Wolff explains in her book.
The China Study, based on 40 years of governmentfunded research by Campbell, suggests that this
approach to eating not only prevents illness, but also
heals such diseases as diabetes, obesity and cancer.
Two-thirds of the world eat a plant-based diet, and have
much lower rates of these crippling diseases. Want to
join them? Here are three days worth of recipes from A
Life in Balance. If you like them, you might find Wolff’s book tasty as well. Bon Appetit.
DAY 1 MENU
BREAKFAST:
Aisha’s Oatmeal w/ blueberries or nuts
Side of steamed kale
A cup of bancha (light green tea) or green tea
LUNCH:
Tempeh Salad sandwich (on 1-2 slices of whole grain bread
with no added sugar)
Confetti Carrot Salad
DINNER:
Gingerly Chickpeas on a bed of steamed Brown Rice
Long Slow-Steamed Vegetables and/or Waldorf Salad
Tip: Add a small amount of sunflower or pumpkin seeds,
•walnuts
or almonds to breakfast oatmeal or other grains to
increase protein and nutrition.
AISHA’S OATMEAL
2 cups spring water
2 cups apple juice
Pinch of sea salt
2 1/2 to 3 cups of rolled oats
1 McIntosh apple, cut into cubes
Put water and apple juice in a pan and heat on high. Add the sea
salt, rolled oats and apple. Bring to a boil, turn heat to low and
simmer uncovered for 8-10 minutes. You may add more water
any time during cooking if needed for desired consistency.
Turn off heat, cover, and let sit for 5 more minutes. This allows
the oatmeal to absorb all the liquid and to create a nice texture. Top with fresh (or dried) fruit, such as delicious Maine
blueberries, peaches, or raisins, and toasted sunflower seeds
or nuts, if desired.
Tip: I’m frequently asked where I get my calcium and protein.
•Green
leafy vegetables, such as kale and collards, and soy
are good sources of easily absorbable calcium. Along with
nuts and seeds, beans, bean products and whole grains contain plenty of protein.
STEAMED KALE
1 bunch kale, rinsed and chopped into bite-size pieces (stem
and all)
1/2 cup water
pinch of sea salt
Put water, kale and a pinch of salt into a pot with a lid. Bring to
a boil over high heat, turn to low and simmer for 3 to 5 minutes. Drain.
Serves 6 (about 1/4-cup servings).
TEMPEH SALAD
3 (8-ounce) packages tempeh (Use Litelife if available.)
1 purple onion, diced
3 ribs of celery, diced
2 scallions, thinly sliced
1/2 cup fresh cilantro, chopped
Optional: 1/3 cup cucumber pickle relish
1/2 cup veggie mayonnaise (egg- & dairy-free)
2 tablespoons soy sauce (shoyu, if available)
1 tablespoon apple cider vinegar (Bragg’s brand, if available)
1 teaspoon of ume vinegar
Cut tempeh into 1-inch squares, put into a pot, and add filtered tap or spring water about halfway up. Bring to a boil, turn
heat to low, cover and simmer for 20 minutes.
Drain, cool and crumble the tempeh into even smaller pieces
with your hands (it softens and crumbles more easily after
cooking). Add onion, celery, scallions, cilantro and cucumber
relish and mix together in a large mixing bowl.
In a smaller mixing bowl, mix the mayonnaise, soy sauce,
apple cider vinegar and ume vinegar. Add to the tempeh and
mix. Serves 8-10.
CONFETTI CARROT SALAD
4 large carrots, grated
3 ribs celery, sliced thinly
1/2 cup organic apple juice sweetened cranberries
1/2 cup parsley (more if desired)
DRESSING
1/3 cup veggie or tofu mayonnaise
1/8 cup apple juice
2 tablespoons of brown rice syrup
1 tablespoon lemon juice
Mix dressing ingredients and mix vegetables. Pour dressing
onto vegetables and cranberries and serve.
TOFU MAYONNAISE
8 ounces tofu
1/2 cup water
2 teaspoons sesame or olive oil
1 tablespoon lemon juice
1 tablespoon brown rice vinegar
1 tablespoon mellow white miso (or 1/4 teaspoon sea salt)
Slice tofu. Steam 3 minutes. Blend ingredients until smooth.
Keeps refrigerated for 2-3 days. If it separates, just re-blend.
Tip: Learning how to cook a pot of brown rice is an easy and
•economical
way to start as a “base” for meals. Or, brown
Minute rice could be used when starting. Brown rice can be
kept for 3-4 days in the refrigerator and can be easily added to
a variety of used recipes. Or, other quicker cooking whole
grains such as quinoa can be ready in 15 minutes.
AMAZINGLY-GOOD-FOR-YOU BROWN RICE
2 cups organic short-grain or Jasmine brown rice
4 cups spring water
Pinch of sea salt
Rinse the rice and place in a pot with the water. Bring to a
boil on high heat. Add the sea salt, then cover. Reduce heat
to low, and simmer for 50-60 minutes. Reheat leftovers in a
little water.
Serves 4-6.
Rule of thumb: 2 parts water to 1 part rice
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Variation: Cook 1 1/2 cups brown rice with either 1/2 cup of
barley, millet, oats, or wheat berries.
Replace cover and simmer for 5 more minutes. Remove from
heat, let sit, and serve after a couple minutes. Serves 6.
Optional: Sprinkle with toasted pumpkin seeds or sunflower
seeds.
Other combinations you might try: > turnip, onion, carrot, shiitake mushroom > carrot, leek, cauliflower, corn, daikon, shiitake, daikon greens > burdock, carrot, onion, squash
Tip: Cook the evening meal and use leftovers for lunch the
•following
day. A rule of thumb I use is to try to have at least
one fresh thing with lunch even if it’s a piece of fruit afterwards.
GINGERLY CHICKPEAS
2 cups chickpeas, soaked overnight
1 onion, peeled
1/4 teaspoon sea salt
1/2 cup fresh parsley, chopped
2 tablespoons fresh ginger juice (grated ginger squeezed to
make juice)
Drain the soaking water for chickpeas. Place them in pot and
add water to cover an inch or more.
Place the onion in the middle of chickpeas. Bring to a boil,
cover, and reduce heat to low. Simmer for about 1 hour. Add
salt, stir, and simmer for 10 more minutes.
When done, pour off a cup or so of the cooking water and set
aside. This can be used to thin chickpea mixture if it’s too
thick. Use a potato masher to mash the chickpeas and onion
until halfway pureed. Grate some ginger and squeeze the
juice into the mixture to taste. Garnish with parsley. Serve on
their own or with brown rice.
Serves 6-8.
Kombu is a sea vegetable, available at most health
•foodTip:stores.
It adds minerals and can help make beans easier
to digest. But if you don’t have it, this recipe will be fine without it.
LONG, SLOW-STEAMED VEGETABLES
2- to 3-inch strip kombu, soaked and sliced into small strips
1/4 cup daikon, sliced into large chunks
1 onion, sliced into large wedges
1/4 cabbage, cut into large wedges
1/4 cup hard, sweet winter squash, cubed
1 carrot, cut into large chunks
3-4 drops soy sauce
1/2 cup of spring or filtered water for steaming
Place kombu and its soaking water in the bottom of a pot. Layer
vegetables on top of one another in the following order: daikon,
onion, cabbage, squash and carrot. Burdock and lotus root, cut
smaller, also may be added.
Cover the pot and bring to a boil over medium-high heat until
there’s steam coming from the pot. Reduce heat and cook
without disturbing pot for 15-20 minutes or longer. If the water
evaporates during cooking, add more to the pot. When the
vegetables are tender, add a few drops of soy sauce and mix.
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WALDORF SALAD
1/4 cup toasted walnuts
1/4 cup raisins
2 cups apples, diced
2 ribs celery, diced
1 grated carrot
2 tablespoons dulse flakes, this sea vegetable is high in minerals and can be readily found at many health food stores
Veggie or tofu mayonnaise to taste
1 teaspoon umeboshi vinegar
Put everything in a bowl and mix in small amount of vegan or
tofu mayonnaise. Splash in some umeboshi vinegar. Taste
and season to your liking.
DAY 2 MENU
BREAKFAST:
Creamy Brown Rice Cereal
Steamed greens
Optional bread: 1-2 sliced of toast with all fruit jam (made with
only fruit), 1 tablespoon of almond butter or drizzled with 1
tablespoon olive oil
LUNCH:
Squashed Adzuki with Quinoa
DINNER:
Mighty Good Minestrone
Caesar Salad
Good-quality bread or a whole grain as a side dish
CREAMY BROWN-RICE CEREAL
1 cup cooked brown rice (can be leftover)
1/3 cup milk (can be soy, hemp, rice milk, or substitute water)
1/2 apple, cut into small pieces
Dash of cinnamon and nutmeg
Mix the rice, milk and apple in a pan on medium heat, stirring
occasionally for 5-10 minutes. Top with the cinnamon and nutmeg. This will keep you satisfied so much longer than sugary
cereals!
SQUASHED ADZUKI
2 cups adzuki beans, soaked overnight—or 4-5 hours if using
same day
1/4 to 1/2 butternut squash, cube unpeeled
1 onion, peeled
1/4 teaspoon sea salt
Spring or filtered water, to cover beans
Once you have soaked the beans, drained them and add
new water, push the whole onion to the bottom of the pot.
Add the cubed squash. Bring beans to a boil on high, then
cover, turn to low. Simmer 1 hour or more, if desired.
Ten minutes before you’re done cooking the beans, add the
sea salt. For each additional cup of beans, add 1/8 teaspoon
of salt.
Enjoy on a bed of whole grains! Serves 6-8.
MIGHTY-GOOD MINESTRONE
1 cup of cannellini beans (white Italian kidney beans)
1 cup kidney beans
1 cup lentils
1 onion
3 carrots, diced
1/2 pound green beans (in season)
3 stalks of celery, diced
1 cup frozen or fresh corn
1 cup fresh parsley, chopped
1 1/2 cups uncooked rice pasta or other pasta
1/4 cup ume plum vinegar
1-inch piece of kombu*
1 bouillon cube (vegan suggested)
1 tablespoon olive oil
Optional: 1 teaspoon Italian seasoning
Optional: 1 can stewed or diced tomatoes. If you use tomatoes, omit vinegar.
Soak the cannellini and kidney beans overnight. Prepare
vegetables.
Discard soaking water and refill pot to cover beans by 2 inches. Bring the beans to boil over high heat, turn to low, cover
and cook for 90 minutes.
Add more water and return to simmer. Add vegetables, bouillon, oil and tomatoes (if desired), and cook for 15 more minutes. Add pasta and cook for another 15 minutes. Add ume
vinegar and parsley, then stir.
Serve this with brown rice and veggies. Serves 10-12
HOMEMADE CROUTONS:
1/2 to 1 loaf whole grain bread, cut into 1-inch cubes
2-3 tablespoons olive oil
pinch of sea salt
Optional: Dried herbs. Try to find a blend made of parsley,
basil, marjoram, chervil, garlic and spices, or use Italian seasoning
Cover the bottom of a cast-iron skillet with olive or other oil.
Heat on medium-high. Add cubes of bread and cook, stirring
occasionally to prevent burning. Cook the bread until
browned. When pan gets very hot, reduce heat to low. When
the croutons are browned and toasted, add sea salt (and
other herbs if desired).
Serve a small portion of croutons with any soup or salad
below.
CAESAR SALAD
1 cup almonds
2 tablespoons nutritional yeast
1/4 cup olive oil
1 tablespoon sesame oil
Juice of 1 lemon
2 cloves garlic, minced
2 tablespoons tamari wheat-free soy sauce (or 1/2 teaspoon
sea salt)
1/4 cup water
Blend almonds alone in a food processor. Add garlic and other
ingredients, but add water last (a little at a time) to get the
desired consistency.
Add dressing and homemade croutons to a large head of
ripped Romaine.
DAY 3 MENU
BREAKFAST:
Corn Polenta Breakfast Porridge
Steamed Baby Bok Choy (follow instructions for Steamed
Kale)
LUNCH:
Skillet Cabbage Lunch
DINNER:
Glistening Squash and Carrot Ginger Soup
Backyard Bar-B-Q Fried Tempeh
Asian Cabbage Salad
Oven-Roasted Veggies
CORN POLENTA BREAKFAST PORRIDGE
1 cup coarse ground cornmeal
3 cups water
1/8 teaspoon sea salt
Place water in a pot, and bring to a boil on high. When water
boils, slowly add the cornmeal, stirring quickly to dissolve any
lumps.
Reduce heat to low and simmer. The cornmeal will start to
thicken in a few minutes. Add the salt and simmer 5 -10 minutes, stirring occasionally. If you want it a little creamier, add a
little more water and stir as needed.
Serve immediately as a breakfast porridge or pour into an
small baking dish and let it stand 15-30 minutes until it sets.
Cut into squares and serve, or save for later and reheat by
putting a small amount of oil in a cast-iron skillet and lightly
frying. Serves 3-4
BROCCOLI SALAD
1 large crown of broccoli, cut into florets, tough parts removed
from stem, chopped
1 carrot, grated
1 can chickpeas, washed and drained
2 red radishes, thinly sliced
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CREAMY MUSTARD DRESSING
1/2 cup veggie mayonnaise
2 tablespoons Dijon mustard
Zest of 1 lemon
1 tablespoon maple syrup
1 tablespoon apple cider vinegar
Pinch of black pepper
Steam the broccoli until crisp-tender, about 2 minutes.
Remove from heat and toss with the rest of the salad ingredients. Whisk together dressing ingredients in a small bowl.
Toss with the salad and chill for 10 minutes before serving.
Great the next day, too!
Serves 2-4.
SKILLET CABBAGE LUNCH
A few carrots, chopped
A stalk or two of celery, chopped
A wedge of purple cabbage, chopped
A few leaves of collards, thinly sliced
Sauté veggies in a little hot-pepper sesame oil and throw in
cooked quinoa (cooked according to package) and a pinch of
salt. Be creative and see what combos of veggies work for
you! Garnish with chopped scallion and toasted pumpkin
seeds.
GLISTENING SQUASH & CARROT GINGER SOUP (SEE
ABOVE REQUEST)
1 medium winter squash, cubed (Leave skin on if butternut is
used. If kabocha or other green squash is used, peel skin, so
as not to have green soup!)
6 large carrots, sliced
1 medium onion, sliced
4 cups water to cover veggies
1-inch piece ginger, grated for juice
Sea salt, or tamari, to taste
Olive oil, if desired
Sauté onion in oil or water over medium-high heat for 1-2
minutes. Cut the squash and carrots and combine with the
onions in a soup pot. Add just enough water to cover the
vegetables, and bring to a boil. Add a small pinch of sea salt.
Cover, reduce heat to low and simmer for 30 minutes until
the squash is soft.
Mash the squash with a potato masher right in the pot or use
a food processor to puree. Add another pinch of sea salt (or
teaspoon of soy sauce). Simmer for 7-10 more minutes. Serve
hot, garnished with fresh parsley and a little juice from grated
ginger. Serves 4.
BACKYARD BAR-B-Q PAN-FRIED TEMPEH
1 (8-ounce) package organic tempeh, sliced into thin strips Oil
to cover bottom of a cast-iron skillet
Heat oil on medium-high heat, and fry the tempeh slices until
brown and crispy. Drain on a paper towel to soak up excess oil.
Dip in grain mustard, if desired. Serves 2-3.
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ASIAN CABBAGE SALAD
1 head purple cabbage, sliced thinly (about 6 cups)
1 large carrot, grated
1/4 cup cilantro, chopped
MARINADE
2 tablespoons olive oil
1 teaspoon hot pepper sesame oil
2 tablespoons brown rice syrup
1/2 cup water
1 tablespoon brown rice vinegar
1 tablespoon lemon juice
1/4 teaspoon sea salt
1 tablespoons of tamari (wheat-free soy) sauce
Prepare cabbage, carrot and cilantro. Mix the marinade ingredients and add to cabbage. Marinate in refrigerator overnight.
Serves 10-12.
OVEN-ROASTED VEGGIES
These are so darn easy to prepare. I go through phases
where I’m just in the mood for certain veggies. This is a
combo I like a lot: parsnips, carrots, thinly sliced burdock,
mushrooms and beets. Roast whatever you like best.
In a bowl, toss chopped veggies with a little olive oil and sprinkle with sea salt. Make sure to coat evenly. (You’ll want to toss
beets separately as their color will seep onto everything!)
Spread vegetables evenly on a cookie sheet and bake at 400
degrees until crispy, about 30 minutes.
Tip: For snacks: If you’re hungry for something between
•meals,
I would suggest a fruit such as an apple, pear or
berries. Leftover vegetables also make good snacks for
between meals, so cook plenty! After eating this way for a
while, your need to snack will diminish.
A Life in Balance also features dreamy dessert recipes,
while Wolff’s first book, Becoming Whole, chronicles
her story. It’s the book that she wishes she had as she
navigated through her bouts with cancer. It also explains
the science behind a plant-based diet, and includes meal
plans, recipes and resources.
megwolff.com
becomingwhole2.com
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1 Celebrated model, actress and entrepreneur supporting
the Make-a-Wish Foundation, Kathy ____
6 ______ Canine Companions
11 “Lady in ___” --Chris De Burgh song
12 “Que ___, ___!” song by Doris Day
13 First word of a huge Zeppelin hit
14 Actress who triumphs over all odds as a boxer in “Million Dollar Baby”
17 Messaging system, for short
19 Movie where Sean Penn plays a father with an intellectual disability (3 words)
21 “Diving ___ and Butterfly,” French book and movie
about a person who had a stroke and communicates with
blinks to write a whole book about his experiences
22 Star in “My Left Foot,” Daniel _____ (goes with 25
across)
24 Electric and conger
25 See 22 across
28 Star in “Door to Door,” a movie about a door to door
salesman with cerebral palsy, William ____
31 Expression of delight
32 Cuba Gooding Jr stars in this famous film as a developmentally challenged man helped by a coach
33 “_____ The Way” - movie about a blind man who
receives the first Seeing Eye Dog in America (2 words)
36 007 movie doctor
37 “Beverly Hills ___”
38 Makes better
44 Bakery worker
45 Location where the Accessibility Summit 2011 was
held
48 It wasn’t built in a day
49 Threshold
50 Comprehend
51 “50 first ___” movie
52 The Humanities
53 Chow down
1 Bring purpose and life
2 Piece of history
3 Orchid wreath
4 First name of a brilliant TV detective with many
quirks
5 Actress Cameron
7 Pack animal
8 Product that restores mobility to people with severe
walking impairments
9 Russell Crowe’s middle name
10 Bread served with korma
15 Car maker
16 Sandwich shop
18 “I did it __ way” Frank Sinatra
20 Tune
22 Theatre
23 Recovers
26 Rock group that sang “Tommy”
27 “Murder, __ Wrote”
29 “Sounds good to me”
30 Field that is playing an increaasing role in medical
rehabilitation
32 Regenerated
34 Make the first move
35 Expected
38 Come in
39 “The Matrix” hero
40 Star in “Philadelphia”
41 He fiddled while Rome burned
42 Star in “A Beautiful Mind”
43 Caught up on some Z’s
44 Kilogram, for short
46 Gardner of “The Barefoot Contessa”
47 Film backdrop
answers on page 62
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EVENTS AND CONFERENCES
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E v e n t s
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EVENTS AND CONFERENCES
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The ABILITY Build program
outreaches to volunteers
with disabilities to help
build accessible homes for
low income families. We are
currently seeking corporations, organizations and
churches to sponsor more
homes. This award-winning
program builds homes and
awareness, changing the
lives of everyone involved.
abilitybuild.org
[email protected]
abilityawareness.org
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