- United Spinal Association

Back to School A Very Personal Letter Sommelier on Wheels
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WITH THE WIJIT LEVER-DRIVE &
fter breaking both of his legs and sustaining
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CONTENTS
September 2015
VOLUME 26 NUMBER 264
life beyond wheels
F E AT U R E S
13 NIPPING INFECTIONS BEFORE THEY BUD Conventional wisdom
says to take antibiotics sparingly. What if conventional wisdom is wrong? BY TIM GILMER
19 THE WINE MAN
For sommelier and para Yannick Benjamin, nothing is
better than bringing people together over a great bottle of wine. BY IAN RUDER
Photo by Lauren Mowery
25 LETTER TO A MOTHER LAURITA TELLADO was asked a heart-rending
question, “How can I ensure I won’t have a baby with your disability?”
44 CHASING THAT DEGREE
Going to college after an SCI is different, but not
impossibly so. STEPHANIE LOLLINO shares stories of students who have made it work.
C O V E R S TO R Y FOUR WHEELERS, FOUR STYLES, ONE DAY 28
Have you ever wondered how other wheelchair users organize their days? We have, too, and asked
ALEX GHENIS, PAULA LARSON, IAN JAQUISS and ELLEN STOHL to let us tag along with them for
one day. We go to work with them, meet their families, learn how they adapt, and see what
products they use to make it all come together.
Cover and Contents Photos by Eric Stampfli
D E PA R T M E N T S
4
5
6
8
10
39
BULLY PULPIT
CONTRIBUTORS
LETTERS
NEWS
SCI LIFE
SPOTLIGHT
40
48
50
52
55
56
UNITED SPINAL NEWS
INNOVATIONS
PARA/MEDIC
ERVIN
CLASSIFIEDS
CRIP BUZZ
BULLY PULPIT
life beyond wheels
SEPTEMBER 2015
NEW MOBILITY IS THE
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4
NEW MOBILITY
Criplessness
Many of us like to say things like, my disability does not define me, and I don’t think
of myself as disabled, but really, just how far
can we go with that mindset? I remember
it was a big deal when I turned 40 and
realized that since I was paralyzed at 20,
my life could be divided neatly in half — 50
percent able-bodied, 50 percent disabled.
Now that I am 70, I have to lay hands on a
calculator to figure the percentage. Let’s
see, 50 divided by 70 = 72.429 percent of
my life I have lived with a disability.
Mathematically, for those of us with
acquired disabilities, the percentage grows
each day but will never quite reach 100 percent, even if we live to be 3,482 years old. In
my case, on my 3,482nd birthday, I will have
lived 99.426 percent of my life with a disability. And what of those of us who were born
with a disability? If you have been disabled
for 100 percent of your life, how can you not
think of yourself as disabled?
I will let you in on a little secret. At the
age of 70 I enrolled in an online class at a
major university. It doesn’t matter what the
subject is. The class is run like an intimate
workshop. We started with eight in the
class, and now we are down to seven. We
meet once weekly for three hours by Skyping. We look at each others’ faces and listen
to ourselves interact with the instructor and
each other, and I would estimate that I am
the oldest student by at least 30 years. I’m
older than the instructor by about 20 years.
I’m also quite sure that I am the only
“On my 3,482nd birthday, I will
have lived 99.426 percent of my
life with a disability.”
paralyzed, below-the-knee amputee
wheelchair user in this class. What makes it
interesting, at least for me, is no one in the
class knows that I am sitting in a wheelchair. They only see me from my chest up.
I have the perfect setup to exercise the
mindset of I don’t think of myself as disabled
because as far as anyone knows, I am not.
Usually, in public or when meeting people in person for the first time, my disability is the most obvious thing about me. But
now that I have a foolproof opportunity to
reverse that perception, I have no need for
it. In fact, the opposite is true. I am dying
to tell my classmates that I am paralyzed,
crippled, with one leg missing below
the knee, and that I have been wheeling
around for 50 years. My crippled identity is
just bursting at the seams to express itself!
Calm down, Gimpster … calm down.
But since the class has nothing to do
with disability, I can’t find a logical way to
divulge my true identity, unless I decide
to spontaneously blurt it all out and spin
circles and do wheelies in a wanton display
of — dare I say it? — disability pride.
Truth is, I feel damn good about my disability. Without it, I am not me.
— Tim Gilmer
CONTRIBUTORS
life beyond wheels
SEPTEMBER 2015
After sustaining an SCI in a car accident in 2002, Erin Gildner
went on to complete her undergraduate degree, get married
and work for the state of Arkansas in several different agencies
and positions. She is now a program specialist for the Arkansas
Disability and Health Program and hopes to complete her master’s in public health by 2016 at the University of Arkansas for
Medical Sciences. She lives in Bryant, Ark., with her husband,
Ryan, their two sons, two cats and a shaggy dog.
San Francisco Bay Area native Eric Stampfli, a paraplegic 40 years
post-injury, has spent more than 30 years breaking down doors
in the challenging world of advertising photography. Having
taught at the university level, he is now actively switching gears
and creating artwork of a different kind. Encouraged by many
of his design students, Eric will be celebrating his first solo fine
art photography show in Los Angeles this October. He describes
himself as “an evangelist for all things creative,” and as a teacher
has helped hundreds of students find their artistic voice.
Laura “Laurita” Tellado was born in San Juan, Puerto Rico. An only
child, she was 3 when her family moved to Orlando, Fla., where
she has resided ever since. Tellado is a freelance writer and blogger for Holdin’ Out for a Hero and Espresso con Leche. As founder
and president of The Laurita Spina Bifida Project, she works to
promote positive awareness of spina bifida and unite SB communities globally. She holds a bachelor’s degree in interdisciplinary studies from the University of Central Florida. Follow her on
Twitter @Laurita86, @TheLSBProject, and @HoldinOut4Hero. FEATURED PARTNER
Mark Johnson is director of advocacy at Shepherd Center in
Atlanta. He also serves as chair of the ADA Legacy Project, which
is working to preserve disability history, celebrate its milestones,
and educate the public and future generations of advocates.
Mark has a master’s in guidance and counseling from University
of North Carolina at Charlotte. He is one of the founders of
ADAPT and has received numerous awards for his advocacy and
organizing across disability, health and human service organizations. He is married and has one daughter. His memoir, I Love
Today, was published in June 2015.
CONTRIBUTING
EDITORS
MICHAEL COLLINS
MIKE ERVIN
ROXANNE FURLONG
RICHARD HOLICKY
PRISCILLA MALTBIE
ALLEN RUCKER
ROBERT SAMUELS
ERIC STAMPFLI
ELLEN STOHL
BOB VOGEL
LOREN WORTHINGTON
COMMUNITY PARTNERS
KIM ANDERSON
CHRISTIAAN “OTTER” BAILEY
MARTY BALL
FINN BULLERS
TIFFINY CARLSON
LAWRENCE CARTER-LONG
RORY COOPER
JASON DASILVA
DEBORAH DAVIS
TOBIAS FORREST
JENNIFER FRENCH
ALLISON CAMERON GRAY
MINNA HONG
MARK JOHNSON
GARY KARP
NANCY BECKER KENNEDY
BRITTANY MARTIN
LINDA MASTANDREA
LYNN MURRAY
ASHLEY LYN OLSON
SCOTT RAINS
TEAL SHERER
MITCH TEPPER
REVECA TORRES
ANTHONY TUSLER
KARY WRIGHT
SEPTEMBER 2015
5
American Cowgirl Road Trip USA New Perspectives
25 Years of ADA:
Progress, Promise and Potential
LETTERS
life beyond wheels
“Our fight
is continuous.”
newmobility.com
Those Who Went Before: Thanks
Our fight is continuous … [“ADA: A People’s
History,” July 2015]. Even though my voice
is not always heard, my presence can’t be
ignored. Thank you to those who have gone
before us to make way for the future. Happy
25th anniversary to the fight!
Barthenia Rochester, Peer Support Specialist,
Independent Resources, Inc.
ADA Not for Disabled
I’ve been using a wheelchair for nearly
34 years, and when the Americans with
Disabilities Act went into effect on July 26,
1992, I was very excited! [“25 Years of ADA,”
July 2015]. Unfortunately for the disabled
community, the ADA merely recognizes
one’s disabilities … nothing more than that.
For the nondisabled community, the ADA
is great! Just think of all those blue placards
hanging from rear-view mirrors in your local
Wal-Mart parking lot! For those of us who
need the ADA, it does next to nothing. For
those people exploiting its benefits solely
for conveniences like closer parking spaces,
the ADA is great!
Joe Reto
Brick, New Jersey
On the Hamster Wheel
Your column on the ADA [Bully Pulpit:
“Winning Hearts and Minds,” July 2015]
prompted me to write. In 1992 I was a [nondisabled] plant manager of a small facility in
Soddy-Daisy, Tenn. Fast forward to 2005. I
was in a plane crash in Grand Junction, Colo.,
and sustained a T12 incomplete injury, which
left me in a wheelchair. I worked hard, went
back to work in March 2007. Fortunately
my old boss at a company I had worked for
previously had no problems with me being
in a wheelchair. He said he knew I could do
the job of a process engineer. But by 2013 he
retired, and the company was bought out,
6
NEW MOBILITY
so I started looking for another job. I came
across some jobs listed on Rush & Company’s
website. I applied and the recruiter responded in an email that none of her clients would
hire someone in “my condition.” She refused
to send my resumes to any of them.
After two years of consulting, I sent in my
resume again [to the same recruiting company] and followed up with several emails and
phone calls. No reply by email or phone.
The job descriptions posted on Rush &
Company’s website do not list any physical requirements. I am now in the process
of filing a complaint with the U.S. Equal
Employment Opportunity Commission. The
owner of Rush & Company called and followed up with a couple of emails pointing
out that they had to follow “strict” guidelines from their clients. I take “strict” as code
for “no one with a disability.” To date they
have not contacted me on the positions I
applied for on their website.
After going through the DOJ, DOL and
several other agencies, I don’t feel confident
the bureaucracy is going to do anything.
That brings me back to the ADA. If you want
to file a lawsuit over being denied a seat at
a football stadium, the feds and lawyers will
line up to help you. As for those of us in the
trenches trying to get a job, they put us on a
hamster wheel, hoping we will go away.
Jim Harris
Bybee, Tennessee
Work to be Done
I totally agree that the work isn’t done [“Stay
Strong, ADA! There’s More Work To Do,” July
2015]. Something that is still commonly dismissed in northern states is that public sidewalks must be cleared of snow and ice for
accessibility. The DOJ Civil Rights Division
has repeatedly stated that the debris removal for accessibility in the ADA includes ice
and snow. Yet the most progressive places
JUL 2015 $4
that claim ADA compliance refuse to take
on this responsibility because of costs —
when burden of costs is not legal grounds
for exemption from the ADA.
Jane Klingsten
University of Michigan
Amberley Snyder: In Awe
This story [“American Cowgirl,” July 2015]
gives new meaning to the saying, “Hard
work beats talent when talent doesn’t work
hard.” I am in awe.
Amy Rast
Lyndon State College
Access Improved
I’ve been traveling routinely since 2007.
Finding real accessibility is rare [“USA: CrossCountry Road Trip,” July 2015], but I’ve
found ways around most everything and
post my findings on TripAdvisor under the
name Cajun71. I have been to Niagara Falls
in Canada and the U.S. side. The Canadian
side is much more accessible, and getting
gasoline was a treat — they still have attendants at some of the stations. I was paralyzed in 1980, and life has improved as far as
access since those early days.
Dawn Marie Klug
Saint Leo University
New Models Better
When I have discussed RV travel with
those individuals with impaired mobility
[Motorvation: “Recreational Vehicles — At
Home on the Road,” July 2015], the one thing
I always hear is that the bathrooms are too
small or configured so the commode is right
up against a wall with the sink almost in one’s
lap. The newer models that have a bathroom
and sink in one are better because they give
more room and the person can sit to bathe.
Jean Baker
Via newmobility.com
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NEWS
By Mark J. Boatman
Steve Gleason Act Signed Into Law
It’s about to become a lot easier for people
with speech impairments to get Medicare
to cover their speech-generating devices,
as President Obama signed the Steve
Gleason Act into law on July 30.
“People like myself, who are literally
voiceless, were heard, loud and clear,” said
former New Orleans Saints football player
Steve Gleason in a statement made earlier this month when the bill passed the
House of Representatives. “This legislation
may have my name on it,” said Gleason,
who has ALS, “but please know it is the
ALS community and the diligent legislators who deserve our applause.”
The legislation is intended to ensure
that Medicare will cover the types of eye-
tracking technology that operate speechgenerating devices. The law removes
these communication devices from the
“capped rental” category, so that hospitals, hospices and nursing facilities can be
reimbursed for them.
“Steve feared thousands of people
would lose their ability to communicate
with the world around them — to share
their stories, order coffee, tell jokes, ask
for help, or say ‘I love you,’” said the
bill’s lead sponsor, Rep. Cathy McMorris
Rodgers, a Republican from Washington.
“Before eye-tracking technology became
available, once people lost their ability
to type, they could no longer communicate, but that all changed with this revolutionary innovation.”
Bronx Medical Center
Sued Under ADA
A Bronx, N.Y., medical center is facing
legal troubles after a federal lawsuit was
filed against it on July 29 over complaints
that it fails to treat people with disabilities. The suit against Union Community
Health Center cites numerous architectural barriers, inaccessible medical equipment, and problems with untrained staff
that fail to adequately assist wheelchair
users — often even turning them away.
“This is an issue of a full service comprehensive medical center that prides
itself on serving the community around
it,” says Michelle Caiola, senior staff attorney for Disability Rights Advocates. “To
have these barriers and not treat those
People in the News: Alice Wong Meets President Obama Virtually
D
isability scholar and advocate Alice Wong made history by
becoming the first person ever greeted by a president of
the United States while driving a telepresence robot.
Wong, who has spinal muscular atrophy, received an invitation to the July 20 ADA reception hosted by President Obama,
but regretfully she turned
it down, since flying to
Washington, D.C., from San
Francisco would be too difficult. The story could have
ended right here, but much
to her surprise and delight,
the White House Office of
Public Engagement suggested a solution: She could
borrow the Kennedy Center’s
Beam Pro, a telepresence
device. The Beam Pro is a
driveable robot with a screen
perched on top of it, and
using this avatar, she could
drive and communicate with
Photo by Pete Souza
8 NEW MOBILITY
those around her through an interactive video screen without
leaving her home in San Francisco.
Wong was delighted by how easy the technology was to use.
“Once you log on, you see the image of the room [where the
Beam Pro robot is] and below that are two smaller screens — a
view of the floor so you don’t hit anything and a screen that
showed my face,” she says.
Before the reception began, Wong, using her robot-avatar,
waited in the Blue Room. Suddenly the president came on the
screen and she was introduced. “Thank you for your leadership,”
he told Wong. She nervously replied, from thousands of miles
away, yet present within the Beam Pro, “Thank you for everything you’ve done for Americans with disabilities.” President
Obama then asked Wong to demonstrate the technology, so
she maneuvered the robot to the left and then to the right. The
interaction was over quickly, but Wong is thankful the robot
made their meeting possible.
The East Room was packed to capacity, yet using the Beam
Pro, Wong made her way into the audience of fellow advocates.
After the reception, Pete Souza, the president’s photographer,
tweeted and Instagrammed a photo of Wong with the president
— the first ever such meeting.
with disabilities on an equal basis as anyone else who wants to walk in and use
the facilities is a problem.“
Disability Rights Advocates brought
the ADA lawsuit against UCHC on behalf
of Bronx Independent Living Services
and individuals with disabilities. Caiola
says the violations degrade the quality of
care at UCHC and endanger the health of
people with disabilities.
Brett Eisenberg, BILS executive
director and plaintiff in the suit, uses a
power wheelchair due to osteogenesis
imperfecta. He says getting care at the
center is a safety risk, plaintiffs have
tried working with UCHC to no avail,
and he just wants to be treated fairly.
“We just want them to be accessible
for us and other individuals with disabilities,“ he says.
Caiola is troubled that these issues
are still occurring. “These facilities had 25
years to bring themselves into compliance, and they should certainly know the
law,” she says. “That they’re still functioning in a way that doesn’t provide equal
access is disheartening.”
NUMBER OF BRONX RESIDENTS WHO HAVE
ONE OR MORE DISABILITIES:
176,915
OF 62 NEW YORK COUNTIES, RANKING OF
BRONX COUNTY FOR HEALTH OUTCOMES:
#62
— DISABILITY RIGHTS ADVOCATES
Is KanCare Dumping PAS
Recipients?
Something is amiss with KanCare, Kansas’
managed care system, warn advocates.
While the state’s personal assistance
waiting list has shrunk by 1,500 — presumably a good thing — the number of
people receiving services has also shrunk.
“That’s very counterintuitive,” said
Rocky Nichols, executive director of
the Disability Rights Center of Kansas,
to the Kansas Health Institute news
service. “If your waiting list numbers
are going down, the number of people
being served ought to be going up. And
this has been happening now — and
we’ve been sounding this alarm — for a
couple years.”
State officials say KanCare inherited
an outdated waiting list. They claim
hundreds of new enrollees are receiving
services, but the total of people receiving
services is dropping through natural attrition. The state won’t share its data, so this
can’t be independently verified.
“Overall it’s really hard to tell how
KanCare has been working out because
the state has data and information
related to goals, accomplishments and
so on that I don’t have access to,” says
Mike Oxford, the executive director of
the Topeka Independent Living Resource
Center. He says the state has been less
than transparent.
After advocates shared their concerns
about KanCare with officials from the
National Council on Disability on July 7,
the Department of Justice has agreed to
investigate. Meanwhile advocates remain
concerned that people who need services are now going without.
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SEPTEMBER 2015
9
SCI LIFE
By Tiffiny Carlson
Stand Out, Be Safe
“There is
no greater
satisfaction than
helping others
climb the ladder
of success.”
Rising From the Ashes
Kevin Saunders, a Paralympian
who has done way more than
just compete, is passionate
about many things, but his
most important passion is letting people know what their
true capabilities are. Saunders
had just graduated from
Kansas State University and
landed a job as an inspector for
the FDA when he was injured
at the T5 level in 1981. While
on the job in Corpus Christi,
Texas, a grain silo exploded,
killing 40 people and throwing
Saunders 300 feet.
When he awoke and doctors
told him he would never walk
again, he was shocked. “When
the doctors told me that I was
a paraplegic, I fell into a massive depression,” he says. “How
could I have been hurt? I was
24 years old, newly married and
with a baby on the way.”
But slowly Saunders found
purpose in life again, and it
was through wheelchair racing. He credits one of the
greatest wheelchair athletes,
10
NEW MOBILITY
Randy Snow, for helping him
get there. “I became friends
with Randy,” he says, “And we
trained together for many years.
They both participated in the
1988 Seoul Paralympics, with
Saunders winning a bronze in
track and field.
Throughout the 1990s,
Saunders honed his wheelchair
road racing skills. He has competed in over 700 races, many of
them marathons. He was also the
first person with a disability to
serve on the President’s Council
on Fitness Sports and Nutrition,
which he did under President
George H. W. Bush.
Motivational speaking now
is his main passion, one that has
taken Saunders all around the
world. “I show audiences how
to bring out their peak performance,” he says, “focusing on
fitness and education. I truly
believe that there is no greater
satisfaction than helping others
climb the ladder of success.”
Learn more at www.kevin
saunders.com
There is an unfortunately high number of
wheelers hit by vehicles each year, and the
main reason for this is that wheelchair users
are not easily seen by drivers. Safer to Be Seen
wants to put an end to this sad state of affairs
with its VISIBAG — a high visibility bag for
wheelchair users.
The VISIBAG has high-visibility panels and
wide reflective strips that are arranged on
the bag to make sure you are seen by drivers,
no matter the weather or light conditions.
Wheelchair users have used reflective tape for
years, essentially doing the same thing, but
this is a definite upgrade.
The bag measures 18 inches tall and 14
inches wide. For some wheelchair users this
may be too large, but the reflectiveness of
the bag trumps the size. If you are out on the
streets often, this is the bag for you.
Look it up at www.safertobeseen.com
Ask Before You Jet Set
It may be based in Croatia, but Travabled.com
is the latest travel site to give disabled travelers
what they have been dreaming of — an online
community where you can get trusted travel
advice from other disabled travelers. Plenty of
accessible U.S. domestic and international traveling advice is available.
Go to www.travabled.com
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Battle of the Bugs:
Is Long-term Daily Use of
Low-Dose Antibiotics Safe?
B Y
T I M
G I L M E R
Most doctors will tell you that long-term daily low-dose use of antibiotics is not recommended. It
can lead to the development of resistant strains of bacteria, an increasingly serious problem. But
sometimes, the benefits can outweigh the risks.
M
any of us have had problems with
infected wounds or sores. Over
my 50-year life as a T11 para (I’m
now 70), I have had about 20 cellulitis
infections — five in one year. In 2012
I got what seemed to be the mother of
all cellulitis infections in my left lower
leg. What started as a large blood blister
turned into a larger, nasty, deep wound.
No matter what I did — take the
usual meds or frequent the wound care
clinic, the wound did not show signs of
healing. I took my cephalexin, went to
a vascular surgeon, wore a wound vac,
had a stent implanted and an artificial
femoral artery graft. The wound finally
began healing with improved circulation, but the infection had gotten into
my bone. The heel of my left foot literally rotted away. Amputation was the
best choice at that point.
A year later the same thing happened
to my right leg, but this time the femoral
graft prevented amputation.
At this point Dr. Bruce Ruben, who
had been acting as a medical advisor
from his home state of Michigan, came
to see me while vacationing not far from
where I live in Oregon. In my home
he examined my still healing wound
and took a complete medical history,
pre- and post-injury. He then wrote up a
plan of treatment, which included using
Unna boot compression wraps (changed
twice weekly), compression therapy
when the wound healed, a possible
venous ablation procedure to correct venous insufficiency from my calf “muscle
pumps” not working properly, zero
external pressure, and a daily dose of
amoxicillin as a long-term prophylactic
to lower the risk of further infections.
Dr. Ruben prescribed my prophylactic daily dose of amoxicillin only after
a thorough evaluation. He treated me
SEPTEMBER 2015
13
— not just my wound — my whole body,
my lifestyle, my history, and he did so
carefully and with complete understanding of all medical options.
So far, after two years of taking 250
mg. of amoxicillin twice a day every day,
I have had no skin problems, no infections. And as a possible beneficial side
effect, I have not had a single UTI in
that same time period, the first and only
time this has ever happened. But Ruben
would be the first to say that taking an
antibiotic daily is not the sole reason for
my infection-free status.
In my case, restored arterial blood supply is critical. Since I can’t deal with compression stockings, compression therapy
with daily Ace bandage wraps is the key to
preventing edema. Treating athlete’s foot
to prevent skin cracks between toes, etc.,
is also important. Using lotion or Vaseline
ointment on my legs to prevent dry skin
is another preventative measure. And of
course, avoiding pressure is a must.
But the last step in tilting the odds in
my favor was the daily use of a proven,
safe antibiotic, not as a “cure,” but to
reduce the numbers of strep and staph
germs on my body — the most common
bacterial invaders in cases of cellulitis.
“Your own body is the key to this,”
Ruben told me. “There are 11 trillion
perfect copies of white cells manufactured
from your bone marrow each day. They
are the first defense infantry that protects
you from invaders. So as long as staph
and strep stay on your skin, and they do
cover you, they usually don’t bother you.
But when you cut yourself [or have a crack
or wound on your skin], those 11 trillion
white blood cells circulate through your
blood and target your skin where the
breakthrough occurs. Within seconds
they have eaten up the bacterial invaders
and your wound is left to heal itself.”
Once my body’s problems — poor
circulation, edema, dry skin, unnoticed
pressure — had been corrected, healing
followed. “Antibiotics are not an answer
to disease,” says Ruben. “They are an adjunct to your natural immune system for
treatment of disease.”
More Cellulitis Stories
Cellulitis can strike anywhere, but most
often it is wherever circulation is com-
promised. New Mobility contributor
Allen Rucker was struck by transverse
myelitis in late 1996, effectively becoming
a lower thoracic para overnight. Not long
after that he developed sores on his outer
ankles. “A number of these got infected
and turned into cellulitis,” he says. “I
would be hit by a fever and get very sick,
103 degrees or so, and have to go to the
ER. My foot and lower leg would get red
and sometimes a red line would start
creeping up my leg.” Usually a vancomycin drip did the trick, but the problem
would return from time to time. “Sometimes it seems I didn’t even have to have a
visible break in the skin.”
Another problematic area was
Rucker’s trochanter — the bony prominence where the thigh and hip attach.
About two years ago he had especially
bad cellulitis in that area and had to be
hospitalized for several days. Doctors
tried various meds, but nothing worked.
“The infectious disease doctor told me
they could not ID the invading bacteria,”
he says. “That was a scary moment. Finally they found the right ‘cocktail’ mix,
and following that they did a tricky skin
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flap operation. That’s when my doctor
decided I should take 250 mg. of Keflex
[cephalexin] twice daily. It has been
about two years and I haven’t had any
recurrence of cellulitis since then.”
Rabbi Herschel Finman, 57, also sees
Ruben. “I have neuropathy, no sensation
in my feet, and I get athlete’s foot but
don’t know it.” Finman has had three
cellulitis infections in the last few years.
“About one a year,” he says. “The first
time I got cellulitis I ran a 104-degree fever and got very sick. The redness started
in my foot and traveled above my ankles
to about mid-calf.” Since Ruben offers
IV infusion therapy seven days per week
in his office, Finman went there instead
of the ER. “I went in twice a day for a
week. The fever broke right away, and I
went back to work.”
But cellulitis came around a second
time and a third time. In all three cases,
he went in for infusion therapy with
penicillin, and in all cases the infection responded right away. Still, he and
Ruben began discussing the possibility
of low-dose prophylaxis for prevention.
Didn’t the possibility of developing a
disease-resistant bug from taking a daily
antibiotic worry him?
“No, not at all,” he says. “I read studies and discussed this at length with Dr.
Ruben. I have full confidence in him
and in the prophylactic treatment, and
I don’t expect infection to return at all.”
He takes 250 mg. of penicillin twice a
day to keep the numbers of harmful
streptococci bacteria low and has been
infection-free for three years now.
What About UTIs?
Taking low-dose antibiotics for urinary
tract infections is more complicated
than with cellulitis. For those of us who
have spinal cord injuries, a UTI can be
difficult to self-diagnose, unlike cellulitis, which results in visible redness,
swelling, and often a high fever. Lowgrade UTIs can be mistaken for a sore
back, fatigue, or other problems. Because
of this, many of us with SCI tend to call
the doctor and ask for a prescription at
the first sign of discomfort. Most doctors, and just about all clinical studies,
warn against this approach.
“The two main rules,” says Ruben,
“are only take antibiotics when you are
really sick, and if you’re not sick, don’t go
to the doctor.”
A bacterial build-up is not the same
as infection. People with SCI and neurogenic bladder tend to have large numbers
of multiple types of bacteria adhering to
the walls of the bladder. This can result
in cloudy, smelly urine and feeling “off,”
but absent fever or pain, it is most likely
a colonization, not a true infection. Usually drinking water and cathing more
frequently can clear out an asymptomatic bacterial buildup. Symptoms of true
infection are fever, possibly chills, back
pain, spasms, and autonomic dysreflexia.
Eric Stampfli, 57, is a T11-12 para,
40 years post-injury. He went through
bladder training in rehab at Santa Clara
Valley Medical Center, where he began
wearing an external condom catheter
and a legbag. Due to uncontrollable leakage at unpredictable times, he still uses
this system.
In the early years following his injury, like most paras, when he noticed
any symptoms he would immediately
be put on antibiotics. “Now that I have
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SEPTEMBER 2015
15
decades of experience,” he says, “I
think maybe I didn’t need them at all.
Most of my symptoms could be explained by my being dehydrated. Nine
out of 10 times, that is the problem.”
At that time, Septra or Bactrim —
sulfamethoxazole/trimethoprim — was
the drug of choice for SCI and UTIs.
Stampfli took it a number of times and
it worked well, but then something
strange happened. “I started getting a
weird reaction on my hands, splitting
Th
e S
nd
a f e and cracking skin, losing skin. Turns out
a v C o n v ,itPwas
el
e r a c Stevens-Johnson syndrome,” he
en wh nien tica
e says. Whenever he went off Septra, the
ev
er reve t wa l
y t stop, and when he went
y oreaction
u wr a nwould
ore
d o
a
n
g a w o r back ontit,
. it would start again.
r
i e s c c e s i e sAbout this time he started taking nia
sib
.
b
le out
trofurantoin
— Macrodantin or Macrobid
ent
mo
—
for
low-dose
daily prophylactic use, 100
d
cn
eed els tmg.
o
per
day.
“I
got
the original prescripme
o a s!
et
sse
tion
from
an
older
doctor, but all other
uire mbl
e; n
d.
o
doctors have gone along with it,” he says.
asy
t
otre o use “Infections have definitely gone down. I
.
st h
eig may get one occasionally, but not severe.
e.
hts
“tot
The incidence of infections is way lower
al-l
ock
” than it used to be.” He does add, however,
dur
abl
e, that this may be partially explainable by
ft
“GO
-AN
YW
-gra
de
his having learned how to take better care
of himself as he has gotten older.
A 2014 study on nitrofurantoin
claims that it is a good choice for lowdose daily use, partly because bacterial
resistance to it has remained “virtually
unchanged since its discovery.” Side effects, compared to other antibiotics used
to treat UTIs, are minimal. However, the
possibility of pulmonary problems such
as shortness of breath in a small number
of users indicates the need for close
monitoring. “When I first went into
Kaiser, a doctor insisted on lung studies,” says Stampfli. “But I haven’t had any
problems with taking it.” He says he has
been taking it for 30 years and doesn’t
have any plans to stop taking it.
Every Body’s Different
John Smith, Jr. had a completely different experience with Macrodantin.
Apparently he was one of that “small
number” who can have an adverse reaction. Smith, 59, a C5 quad, was taking a
low dose of one pill daily, like Stampfli.
“After four months, I developed a raging
infection with a side effect of pulmonary
HER
t, a
nd
E”
Cha
edema, and the doctor wanted to up
the dosage, but I thought Macrodantin
could be the problem,” says Smith. “He
ignored me and increased the dosage,
and the swelling in my lungs got worse
and it was harder to breathe. I stopped
taking it and the doctor threw a fit. But
the next day the swelling went down. I
am actually allergic to Macrodantin.”
Smith now manages his bladder by
trying to avoid antibiotics altogether. “I still
take Mandelamine (methenamine) and
vitamin C,” he says. Methenamine is an antiseptic for the bladder but not an antibiotic,
and should not be taken with Ciprofloxacin
or Bactrim without first checking with a
doctor. Smith takes 500 mg. daily of Mandelamine with plenty of water. “I just know
that on me it works really well.”
Joan Anglin is a 76-year-old C4 quad,
injured 25 years ago, who lives an active lifestyle, spending as much time as
possible in her greenhouse, where she
produces thousands of seedlings. She has
been taking a daily low dose of Bactrim
for almost six years with no problems
— unlike Stampfli’s experience. “This
last February was my first UTI in almost
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three years,” she says. “Bactrim seems to
be helpful. When I went off of it for a year,
it got much worse.” She says she doesn’t
understand how it works, but it does. “My
doctor says using Bactrim like this doesn’t
make sense, but he does it with one other
quad, and it’s working with both of us, so
he wants to keep using it.”
Clearly, no doctor has a crystal ball
that produces a one-size-fits-all treatment for everyone.
What Can We Conclude?
Jerome Stenehjem, M.D., physiatrist
and medical director of SHARP Alison
deRose Rehabilitation Center, thinks
long-term antibiotic therapy for UTI
prevention in SCI is where the art of
medicine intersects with science. “In
theory,” he says, “long term use of a
drug like nitrofurantoin, or any other
antibiotic, to prevent UTIs should not
work due to development of resistant
organisms. However, empirically, and
inexplicably, it often does work.” Where
recurrent UTIs are a vexing problem,
he thinks it may be “worth a try” for
the patient and the treating doctor, with
close monitoring.
He has also learned another prevention technique that he is eager to share.
“I have had great success with bladder
irrigation. Once a day, after draining the
bladder, a 30 ml. solution of gentamycin
is infused and left in the bladder. This
has the advantage of having no systemic
effect but good efficacy in the bladder.”
In interviewing medical experts
and numerous people who have experience with daily low-dose prophylactic
use of antibiotics, some of whom are
not included in this article, two strong
themes emerged. First, whether treating
cellulitis or UTIs, we all have unique
reactions to antibiotics — what works
for one person does not necessarily work
for another. Second, antibiotics can be
harmful as well as beneficial.
The lesson is clear: Be certain to find a
doctor who knows your medical history
well, is familiar with your disability, and
keeps up with the latest studies on antibiotic use. The decision to start a prophylactic regimen of daily low-dose antibiotics should not be made without carefully
weighing risks versus benefits for your
unique situation. And close monitoring
of potential side effects is also a given.
Studies of Interest
Cellulitis: “Antimicrobial Prophylaxis
in Adults,” Mayo Clinic Proceedings,
July 2011; www.ncbi.nlm.nih.gov/pmc/
articles/PMC3127564/.
Nitrofurantoin: “Role of Old Antibiotics in the Era of Antibiotic Resistance,”
February 2014; www.mdpi.com/journal/
antibiotics.
Urinary Tract Infections: “Prevention
of Urinary Tract Infection for Patients
with Neurogenic Bladder,” University of
Michigan, Current Bladder Dysfunction
Reports, December 2014; link.springer.
com/article/10.1007%2Fs11884-0140257-4#page-1
• “Urinary Tract Infections in Spinal
Cord Injury,” Harvard Medical School,
2014; emedicine.medscape.com/
article/2040171-overview
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NOSE FOR
A
HOSPITALITY
W
hen Yannick Benjamin
Googled “wheelchair sommelier” in the wake of the
2003 car accident that left him paralyzed, the results were not heartening.
The returns told of a French sommelier
with a crushed hand, but there didn’t
appear to be any wheelchair users who
were serving wine at the highest level.
Before the accident, Benjamin, then 25,
was working at the Ritz-Carlton and
well on his way to becoming one of
New York’s top sommeliers. The career
perfectly blended Benjamin’s passions
for wine and people; as a sommelier he
could bring people together through
wine. Becoming a sommelier was a goal
he had worked toward for years. Now
he was a T6 paraplegic aspiring to a field
where no paraplegic had gone before.
“I thought, oh my God, what am I
supposed to do now, get a desk job or
just go back to school and become a
lawyer?” recalls Benjamin. “But I really
B Y
I A N
R U D E R
felt that there was no reason for me — or
anyone with a disability for that matter
— not to pursue their passion and work
in the field they choose.”
That attitude, coupled with the drive
that had helped him rise so quickly
before his accident, set Benjamin on
a long and difficult, but ultimately
rewarding, path toward achieving his
dreams. During that journey he discovered a new passion, helping others
with spinal cord injuries, and used his
hospitality and wine experience to cofound Wheeling Forward and launch
the highly successful Wine on Wheels
fundraisers for SCI. He also found his
future wife and helped make sure that
any aspiring sommeliers who Google
“wheelchair sommelier” in the future
will find a plethora of articles and
information.
***
After his injury, Benjamin wasted
little time before plotting how he would
get back to becoming a sommelier. A
steady morphine drip didn’t keep him
from drawing restaurant layouts while
recovering from his spinal fusion in
the ICU, and once he started rehab at
Mount Sinai he surrounded himself
with books about wine. “They would
take me away from those few moments
when I wasn’t in the best mental state,”
he says. “They meant so much to me at
that time because I was reading about
places — about vineyards in Portugal,
vineyards in southern Spain, the significant wine regions located in Germany
and in France — and I remember thinking about them and imagining being
there.”
When his therapists asked what his
future work plans were, he told them
he still planned to be a sommelier and
tasked them with helping him figure
out how to carry bottles and glasses on
his lap without spilling, dropping or
breaking them. “It wasn’t an overnight
SEPTEMBER 2015
19
Photo courtesy of Wheeling Forward
Benjamin makes
time for handcycling every day,
often waking
at the crack of
dawn. “If I don’t
work out, I get
very grouchy,”
he says.
20
NEW MOBILITY
success,” says Benjamin. “I think my
passion outweighed the failure. It
came to where I no longer dreaded
failure. Instead I embraced failure
because I felt that every time I failed,
I was good at taking it, breaking it
down, and learning from it — and it
only made me a better person.” (See
sidebar on his custom tray, page 22.)
Alex Elegudin, a C6 quad,
befriended Benjamin during their
stays at Mount Sinai and says it
was always clear he would find a
way. “His passion for wine and the
industry was so strong,” he says.
“Yannick’s not the kind of guy that
could have a desk job. He needs to
be out there on the floor, working
with people. It’s his calling.”
Benjamin grew up in Hell’s
Kitchen watching family and friends
work in the restaurant industry and
focused on a career in the industry
at an early age. Both his parents
were French, and his mom was an
excellent cook. “Once a month we all
have the family over and everyone’s
together — of course the main topic
is always restaurants,” he says. “One
of the things I love about wine is
how it gets people together and how
it gets people to talk about different
subjects. It’s a very intimate thing. I
always loved that fact. I always love
being around people, and I always
love hearing other people’s stories.”
At 19 he was working at Le Cirque,
one of New York’s most esteemed
restaurants. Before he could even
legally drink wine, he was enrolled
in wine classes. “I knew pretty much
from when I was in high school that
I was going to make hospitality my
career,” he says.
Fellow sommelier and friend
Pascaline Lepeltier says Benjamin’s
personality is ideally suited for the
field. “He really cares about people,”
she says. “He is a genuine hospitality person. He’s really, really good
at paying attention to the people
around him and trying to make
them happy.”
Those qualities could have made
Benjamin an excellent food server,
chef, or restaurant or bar owner —
something he still aspires to — but it is
his passion for wine that defines him.
“He loves wine for the right reasons,
not for the label or for the fame, just
because he realizes sharing wine should
be simple and for everybody. He has this
amazing quality of being super knowledgeable and an excellent taster, but he’s
never arrogant,” says Lepeltier.
***
Even with the ideal makeup, training
and passion, Benjamin knew finding
work as a sommelier would not be easy.
He anticipated the difficulty of finding a
venue with enough space for him to effectively roll around and serve in notoriously cramped New York, but he didn’t
foresee some of the other obstacles that
awaited him. He applied all over New
York and ended up with “75 to 100”
interviews. The employers’ responses
ran the gamut from not knowing how to
deal with a sommelier in a wheelchair,
to enthusiastic but logistically unable
to hire him. Despite receiving much
encouragement, one interview nearly
made him give up.
“The owner of the restaurant comes
out and he says, ‘Uh, Yannick Benjamin?’ and I say, ‘Yeah.’ He started
laughing nonstop and was incredibly
nervous — it wasn’t like he was laughing hysterically at me — and he was
just like, ‘Are you OK?’ I said, ‘Yes.’
He asked what happened, and I said,
‘What do you mean, what happened?’
He said, ‘Wait, did you get into some
kind of ski accident?’ And he just kept
laughing and laughing … I had given
up at that point. Rejection is one thing,
but humiliation is another.”
Luckily, it wasn’t in Benjamin’s character to give up. He eventually found
work at Le Du’s Wines in 2006 and then
at the esteemed University Club in 2012.
With one of the biggest cellars of any
private club in America and a spacious
floorplan, the Club has proved a perfect
place for Benjamin to work on his craft.
He appreciates the way the Club has
worked to accommodate him and of
course, the fact that it hired him.
“Most people think it’s really great
that a wheelchair user like me is working
and pursuing my passion, and they’re
always impressed that the club would
hire someone in my situation,” he says. “I
know a lot of people who say hiring me
is not a big deal, that’s what employers
are supposed to do. But I tell them, no, 99
percent of the people I interviewed with
or tried to work for did not want to hire
me. It’s a pretty big deal.”
Looking back, the arduous process of
finding a job was not without benefits.
“Going in, I didn’t know if people were
going to take me seriously or if they were
going to be shocked,” says Benjamin.
“But one thing that I have learned about
being in a wheelchair is that if you come
across as confident and comfortable with
who you are, then I don’t think people
are ever going to really notice.”
***
Another unexpected positive outcome of Benjamin’s injury has been the
creation of Wheeling Forward, a New
York-based disability advocacy group
Benjamin and Elegudin founded in 2011.
The two were injured about a week apart
and quickly became friends during rehab
at Mount Sinai as they worked through
the many issues that arise post-SCI.
“In rehab I remember how we
SEPTEMBER 2015
21
always had friends and family come to
visit, and many other people there with
us didn’t have any friends or family.
We realized how lucky we were that we
had help to keep our morale up,” says
Benjamin.
The two remained close friends over
the next few years as they got their lives
back together. Benjamin went to wine
school, Elegudin went back to college
and then law school and got involved
in volunteering.
“We got to a place where we had been
there for each other over all those years,
supporting each other, and you know,
our friendship grew,” says Elegudin.
heavy on the development side and making sure that fundraising and partnerships are coming in. He loves that role,
and is a natural in bringing attention and
social media to the organization. And
I’m very heavy on the programming side,
putting all the programs into place, running them and spending the funds.”
One of Benjamin’s biggest contributions has been an annual fundraiser
called Wine on Wheels. Benjamin
envisioned the event as an intersection
of his two worlds — wine and Wheeling Forward — that would bring both
communities together by enjoying one
of his passions to support the other. The
On top of all the normal rehab
tasks, Yannick Benjamin had to
figure out how to carry expensive
wines and glassware to would-be
customers. “One of the biggest
challenges we have as wheelchair
users is to be able to tend to stuff
on our lap while we’re pushing
our chair,” says Benjamin. “So if I
have a normal tray on my lap with
glasses on it, they don’t move. But
as I start pushing, everything flies
off. I needed something I could
just put the glasses in without
them moving, and through trial
and error I was able to develop a
tray with a carpenter. The eventual
model, built by Jean-Paul Viollet, has specific slots for bottles,
glasses and a decanter.
“And then one day we just said, ‘Hey, we
can help others who weren’t as fortunate
as we were, and we want to do it.’”
They launched Wheeling Forward
in December 2011 and have watched it
grow since. The organization now offers a
variety of programs to help New Yorkers,
including adaptive sports, fitness, nursing
home transitions, social events, scholarships and more. Benjamin and Elegudin
continue to work to raise the organization’s profile and expand its reach.
“We really complement each other
well,” says Elegudin. “Yannick is very
22
NEW MOBILITY
results have been an unabashed success.
The first Wine on Wheels in February
2012 raised around $20,000. The 2015
event, held May 2, has already grossed
over $125,000.
“It’s such a cool event,” says fellow
sommelier Heidi Turzyn. “New York
City is so big and so competitive, and
there are so many somms, and Wine on
Wheels just stops everything and brings
them all together for a great cause.”
Turzyn met Benjamin two-and-a-half
years ago at another wine event, and the
two are now engaged to be married next
year. She remembers him being taken
aback when she asked why he returned
to the wine industry after his injury on
one of their early dates. “There was no
other option,” he told her. Now that she
has gotten to know him and adapted
to his religious early morning exercise
routines and heard the stories of how he
would wake up at the crack of dawn as
a kid to go play hockey two hours away,
she understands.
“His drive is beautiful,” she says.
“Every day he is out the door, going. He
just works really hard to make sure he
gets done what he commits to and what
matters to him. It reminds me every day
to push a little harder.”
His friends say that willingness to go
the extra mile is one of the qualities that
defines Benjamin. “He’s always there
when you need him,” says Elegudin. “I
know I can rely on him for anything,”
adds Lepeltier.
That drive and his innate ability to
put people at ease are behind much of
his success to date, and will likely help
him accomplish even more, according
to those around him. Elegudin shared a
story from the first Wine on Wheels that
illustrates Benjamin’s approach.
“The morning of the event while
we’re setting up, he decides to break out
an impromptu dance contest — right in
the middle of the venue, like two hours
before we’re about to start. And all the
volunteers and all the people who get
there early just have this dance contest,
and we give away a bottle of wine. He’s
just really easygoing. It’s his thing.”
Benjamin is excited about expanding
Wine on Wheels beyond New York and
continuing to grow Wheeling Forward.
His dream of owning and running a
Cheers-like establishment remains
alive, but for now he is focusing on his
upcoming nuptials and simply being the
best sommelier he can be. To that end,
he continues to study for the Court of
Master Sommeliers exam and a chance
to earn the title Master Sommelier.
There are only 147 Master Sommeliers
in the world, and he would be the first
paraplegic one.
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TO THE MOTHER WHO ABORTED HER
BABY WHO HAD SPINA BIFIDA — LIKE ME
Laurita Tellado is a 28-yearold woman who has spina
bifida and blogs about her
fantastic life, work she
enjoys and a community
she loves. When she was
contacted by a woman who
aborted her fetus because
it had spina bifida, her first
reaction was shock, then
outrage, then sadness … and
finally, remarkably, grace.
R
ecently I received an email from a mom who contacted
me for advice. She was pregnant, her fetus had spina
bifida, and at the recommendation of her doctor, she
chose to abort. In addition, she wanted my advice on
how not to have another baby with spina bifida. Having spina
bifida myself, I felt the entire gamut of negative emotions upon
opening and reading that email — anger, sadness, judgment
toward her and an overall sense of melancholy that pervaded
my mood for several days.
In an attempt to sort out my thoughts, I took to
the only place I felt I could safely share my
heart — my blog, Holdin’ Out for a Hero,
where I published a letter to the mother
that I did not send.
The backlash to this entry was
almost immediate. Although I am
still very much on the fence in the
abortion debate, I expected there
would be pro-choice advocates
who would argue that she acted on
her rights. What I didn’t expect was
the anger and vitriol that spewed,
even from moms of children with
spina bifida who know me personally.
I was accused of not being a good advocate because a good
advocate “doesn’t think of her own feelings.” How is it even
possible to do that? I could never put my own feelings aside,
for it was my own feelings that helped me become an advocate
for the spina bifida community. It is my emotions that fuel my
passion for activism and education. I could never turn off my
emotions. That is just absurd.
However, I also was not prepared for the outpouring of
love, support and encouragement from many friends and followers who applauded my blog entry. They felt it was a
good tribute to how so many parents of kids with
spina bifida — and adults with SB, especially
— feel when they come across stories like
these. I will be forever grateful for these
people, for they buoyed my spirits up
during one of the most challenging
situations I’ve encountered in my
five-plus years of blogging.
So, without further ado, following is my first letter to her, the one I
posted on my blog but did not send.
And then what I actually sent to her
follows after.
And it was all from the heart.
By Laurita Tellado
SEPTEMBER 2015
25
ht
out eig
b
a
s
a
e
she w
with m
when
t
i
n
a
m
a
n
M
s preg
month
FROM THE DESK OF
LAURITA TELLADO
Mam
i and
me
Dear Woman,
a lot of thought and have decided to
on an impulse. In fact, I have given this
this
ing
writ
not
situam
I
say
me
let
off,
First
, gain perspective from others in your
which I could cool off, reflect, cry, pray
give this situation a “grace period” in
s.
r or bitternes
in which to answer you without ange
ation, and allow myself enough time
I needed this time as much
ciful and fair to you. But please know
mer
e
mor
be
to
me
ed
allow
has
time
Of course, this
so personal to me.
ess my emotions about an issue that is
a
as you did. It’s not easy for me to proc
e your pregnancy of a child with spin
and answers. After choosing to terminat
ce
advi
for
ng
aski
me
iled
ema
you
But
” baby.
my wisdom, on how to have a “healthy
bifida, you want my advice, my insight,
How’s this?
to predict what your next
no wisdom, no tips, no magic crystal ball
ers,
answ
no
ce,
advi
No
you.
offer
to
I have nothing
of
child will be like.
managed to break down wall after wall
email was to hate you. After all, you
has
it
s,
year
28
for
And
.
My first instinct, upon reading your
ingly building
m that I have spent 28 years painstak
cautious, precarious illusion of self-estee
worked for me.
had children with spina
y moms who contacted me. Most have
man
the
by
ed
mov
was
I
,
ging
blog
n
When I first bega
to handle the birth of a child
spina bifida and wanted advice on how
with
baby
a
with
nant
preg
were
e
bifida, and som
out there in cyberspace can relate. I was
solidarity, just to know someone else
ted
wan
r
they
be
may
Or
y.
bilit
disa
with my
of hope for what the future held for thei
these women, to give them a glimmer
help
to
by
able
g
over
s
bein
time
of
y
idea
man
the
at
rded
d
elate
rn, I have been rewa
p and unconditional support. In retu
children. I offered them my friendshi
ine happiness at my triumphs.
genu
r
thei
and
s,
in my difficult time
their reciprocity, their encouragement
Then I opened your email.
white lies I told myself quickly
uragement from these moms and little
enco
and
ort
supp
of
s
esse
fortr
the
if
It’s as
ncibility.
erable. You shattered my illusion of invi
of
eroded around me. I was exposed. Vuln
about the good, the bad and the ugly
encouragement, of sharing knowledge
the
use
beca
y,
man
to
seem
I built a community of support and
may
it
as
trivial
thank me for simply sharing my story,
spina bifida. Women all over the world
r children can aspire to this.
thei
w
kno
to
them
s
help
It
e.
s them hop
story of my normal yet fulfilling life give
ad we would have shared. Now
ted your baby. You cut the common thre
abor
you
use
beca
you
you,
help
ot
cann
I
And yet
that child with spina bifida, the one
use I am nothing like you. No, I am
beca
us,
een
betw
g.
m
livin
chas
of
thy
dark
a
wor
is
ed
all I see
it wasn’t deem
I see the life that was discarded because
chose to abort. I look in the mirror and
me, and I am angry beyond words. Be’t want your next baby to turn out like
even my own mother would
You ask me for advice because you don
one wants to have a child like me. Not
no
life,
my
in
d
ishe
mpl
acco
have
I
just maybe, your story and my
cause in spite of all
t frightens me the most — that maybe,
wha
is
that
And
me.
bore
she
But
.
have wanted that
win.
each won the lottery no one wants to
mother’s are not all that different. You
ticket.
, take a second glance at your lottery
I wish you well … and maybe next time
Af ter a few days of mul
ling it over, I decided to
finally reply to this
woman with a clear head
and lighter hear t. This
is the letter I actually se
nt:
Dear Woman,
Thank you so much for
contacting me. I can’t im
agine how difficult it mu
bifida after losing a baby
st be to contact someone
with spina bifida.
with spina
First, let me say I am ver
y saddened for your loss.
However you lose a baby,
difficult. I admit, upon firs
it is heartbreaking and it
t reading your email, I wa
must be so
s quick to judge you. I felt
baby with the condition
angry that you did not wa
that I have, as if having spi
nt to have a
na bifida means my life is
answer you immediately.
not worth living. This is
why I did not
After much thought, cry
ing and praying, I have
come to realize there are
information they need to
many like you who do no
make this decision. I know
t have the
for
a fact that many doctors
abortion when spina bifida
put pressure on mothers
is diagnosed.
to have an
I have lived with spina bifi
da my whole life, but I hav
e never been a mother, so
I know from having spina
of course my advice is bas
bifida myself.
ed on what
Let me start by saying the
re is no way to guarantee
you won’t have another chi
promise you that.
ld with spina bifida. Nobo
dy can
Sadly, there has not been
much research or inform
ation about spina bifida un
to guarantee you won’t hav
til recently. Honestly, the
e a baby with any disorder
only way
or disease is to not get pre
gnant.
A B vitamin called folic aci
d has been shown to help
prevent a child from having
it as recommended by a do
spina bifida, but even if you
ctor, it only works about
70 percent of the time. So
take
without spina bifida. He
that is not going to promi
re is a link to some inform
se
you
a
atio
bab
n
y
about folic acid publishe
derful organization that
d by the March of Dimes,
helps prevent birth defect
a wons and support families of
marchofdimes.org/pregn
children affected by birth
ancy/folic-acid.aspx
defects: ww w.
Because you seem very det
ermined to not have a bab
y with spina bifida, the bes
this: If by chance you do
t piece of advice I can off
end up becoming pregnant
er you is
with another baby with spi
death sentence, or a traged
na bifida, please know tha
y.
t it is not a
I have met many, many fam
ilies who have children bor
happy, successful, even hea
n like me, with spina bifi
da, who, like me, grow up
lthy adults. Yes, they som
to be
etimes go through many
tions, but most of us grow
surgeries or other medic
up happy and make friend
al complicas, and as adults, get jobs,
our own families. I have pla
go to school, even get ma
yed with many children wit
rried and have
h spina bifida, and they are
and very smart and active
absolutely beautiful and pre
.
cious,
It is possible to have spina
bifida and live a happy, hea
lthy life.
I work as a blogger, writer
, and social media professio
nal, and I am often invited
around the United States
to speak at events and con
. I have connected with adu
ferences
lts with spina bifida and
reach out to me for advice
their families all over the
or simply to know someon
world who
e else understands.
I do not mean to say I nev
er get sick or feel pain, bec
ause I do. I have had 19 sur
visits. My family has bee
n through a lot, and it is
geries and many, many ho
not easy. Pain is a part of
spital
sick, hurt, and suffer at som
life, and even “healthy” chi
e point. All parents feel the
ldren will get
ir job is to take away the
have done with me, their
ir child’s pain, but like my
job is to stand by her, to hol
parents
d her hand when she is hav
best friends and love me
ing a hard time. My parent
so much.
s are my
So please don’t think hav
ing spina bifida means I hav
e a horrible life. Thank Go
grateful for every minute
d, I live a wonderful life and
of it.
I feel
I hope this serves to encou
rage you, no matter what
doctors say, no matter wh
mom you can be for your
at others say to you, to be
child, whether he or she has
the best
spina bifida or not.
That’s all you can really do.
May God bless you and ple
ase contact me if you want
to talk some more. I am her
e.
Laurita
A DAY IN
THE LIFE
of Four Wheelers
Alex Ghenis, Paula Larson, Ian Jaquiss and Ellen Stohl are four
very different people with disabilities with one similarity in
common: Each agreed to share a day of their lives, taking us
on a tour of what do they do, where they go, how they adapt,
and the tools and products they use to make it all work.
28
NEW MOBILITY
MOST
WEDNESDAYS
B Y
Photos by Eric Stampfli
M
A L E X
ost of my Wednesdays start at 6
a.m., and today is no different.
My personal attendant, Jim, who
I’ve been working with for a couple years
now, comes into my room after a quick
drive from home. I have a suprapubic catheter, and we’ll be switching from a bedside
bag to a leg bag later. But for now, Jim gives
me an extra minute’s rest by quietly rinsing out the leg bag before we do stretches.
When he’s done, we stretch my arms and
legs and then change out the bags before
Jim brings over my shower chair. Right
after my accident I would have moved over
using my Hoyer lift, but I switched to pivot
transfers about 10 years ago and haven’t
turned back. To do the pivot, Jim locks my
shins between his thighs, grabs under my
shoulders, and then shifts his weight back
to lift my butt off the bed and swing me
over to the shower chair. He’s only 5 feet 6
inches, but it works like a charm.
Morning routines are interesting. It’s
two hours from the time Jim arrives until
I’m up in my chair, which is why I’m waking up at 6 a.m. just to get to work on time.
I can’t avoid the routines, so I do everything
possible to make the most of my time —
just like my half-hour routine at night,
where I watch the Daily Show and laugh
myself to sleep.
It’s a minute later and Jim has rolled me
into the bathroom. I do a bowel program
every day using a combo of two suppositories: Magic Bullet and CEO-TWO, which
is the most effective setup I’ve found so
far. Even with the good combo plus digital
stimulation to wrap things up, it can take a
while, so I browse the Internet on my laptop
in the meantime. We’ve figured out a setup
with folded towels and a plastic tray that
helps the laptop stay stable on my lap, and
Dragon NaturallySpeaking makes it so that
I can type if I need to. My go-to morning websites once I’m set up are some Cal
Berkeley sports blogs, climate change news,
and trusty old Facebook. So if you see me
post something at 6:30 a.m., you’ll know
what I’m doing.
After things wrap up, I take a shower
G H E N I S
— but only three times a week in consideration for the California drought — then
get dressed and in my power chair. Some
podcasts on my bedroom speakers make
that part of the routine go by faster and
seem less like a chore, so I start my day out
feeling fresh. Today we’re listening to Stuff
You Should Know’s podcast on clowns, and
Jim shudders as he tells me about his 6th
birthday party. I’ll spare you the details, but
it’s a hell of a story. Trust me.
Breakfast is pretty straightforward, and
the only disability trick I have is coffeerelated. As a C5 quad with no fine-motor
Alex was nervous about losing his benefits when
he started back to work, but now that he has figured out the regulations, he loves his job.
dexterity, I use tenodesis to grab things
— this means I flex my wrist and use the
natural motion that results to pinch and
hold things. It turns out beer steins have
the perfect type of handles for holding a hot
cup without burning my hand, and luckily
the Dollar Tree has huge ones. As I nurse
some piping java out of my 25-ounce stein,
I thank Oski (the Cal Berkeley mascot, my
main deity) for caffeine and know I’ll be
productive once I get to work.
My job at the World Institute on Disability is a half-mile from my front door
here in Berkeley, and going full-speed down
side streets gets me there in under 10 minutes. It’s amazing to have work this close. I
don’t have a rampvan and instead use the
Bay Area’s solid transit system, but rolling
straight to work is the easiest thing possible.
SEPTEMBER 2015
29
(Left) After a long day at work, Alex loves
unwinding with friends in his Berkeley
apartment. (Below) Alex’s office at the World
Institute on Disability is set up to make it easy
for him to work independently.
ALEX GHENIS, 27, C5 QUAD
Turf: Berkeley, Calif.
Employment: Policy Specialist, World Institute on Disability
Staying employed: Disability Benefits 101, www.db101.org
His ride: Invacare TDX-SP with tilt-recline seating
Hobbies: UC Berkeley sports and saving the earth
Staying buff: The Uppertone at UC Berkeley’s Rec Sports Facility
Pro tip: Use both Magic Bullet and CEO-TWO suppositories
I arrive at the office at 9 a.m. and my coworker Kat is sitting at
the desk right next to mine, same as usual. She does assorted
projects and manages some human resources work, and she’s
also one of the designated staff for handling reasonable accommodations, like when I need help microwaving lunch later. We
say hello and crack a few jokes, then she unpacks my backpack
and throws my laptop on my thighs.
I was once nervous about working because I thought I
might lose my Medi-Cal and In-Home Supportive Services,
which pays for my personal attendants. If those disappeared,
my earnings wouldn’t come close to keeping my head above
water. But after chatting with some friends and new coworkers,
I realized that working is completely possible if I know how to
navigate the regulations — check out www.db101.org for tips
on that. So when I started working I signed up for California’s
250 percent Medi-Cal working disabled program and was able
to keep both. Now, I work on a ton of policy issues — my main
schtick is actually how climate change will hit people with disabilities — and it’s fulfilling to be doing something good with
my time. It still doesn’t hurt that the day’s going by quickly,
and I’m not complaining when the clock hits 5 p.m. before I
even realize it.
After work is a great time to hit the gym, and by 5:30 I’m in
the lobby of UC Berkeley’s Recreational Sports Facility, ready
to work out. An old friend meets me and we head to the locker
30
NEW MOBILITY
room where he helps me put on my workout shirt, a raggedy
screen-print tee a kid made for me when I was a camp counselor in 2007. As I head out of the locker room, I remember
when I started doing cardio at the gym a few years ago and
realized there weren’t any good options for doing weights.
Some research brought me across the UPPERTONE, which is
built for folks with SCI, so I decided to talk with management
and started a petition to get one in the RSF and it ended up a
success. A lot of times it’s easy to just be frustrated when there
aren’t any accessible options, but it’s better to channel that
frustration into action. That’s what happened with the UPPERTONE, and today I’m able to build up some muscle because of
it — and so are a few other folks that use it on the regular.
I’m done with the gym an hour or so later and head out.
Some evenings I’ll go to an event around town, like the weekly
poetry slam at the Starry Plough pub by my house. After all,
it’s nice to stay social and keep life fun. But today’s been a
longer one, so off to home I go. My roommate, who also helps
with dinner and cleaning and throwing me into bed, is hanging in the living room playing with her cat when I arrive. “Are
you ready for some food?” she asks. “Of course!” I reply, so
we throw together a salad and I munch away while watching
SportsCenter — they’re talking about Cal Berkeley’s basketball
win earlier today, so life is good.
By the end of dinner, I’m yawning, so we switch straight
from food to the night routine. Getting into bed takes a half
hour, a perfect amount of time for the Daily Show on my
bedroom television. The yawns get bigger as I start to sink
into my comfy memory foam mattress. The foam makes it so
I don’t get pressure sores while I sleep, and the full-size is big
enough for someone to stay the night, as opposed to my air
mattress from the few years after my injury. Tonight is a solo
one — womp womp — but I’ll be crashing out so quickly it
wouldn’t make a difference. My roommate says good night as
she closes the door, and I fall asleep, recharging for another
full day tomorrow.
AN UTTERLY
UNPREDICTABLE DAY
B Y
O
P A U L A
nce upon a time, a day in my life would have been utterly predictable.
I would lose an early morning fight with the
alarm, wake up later than I should — man, I hated mornings — stumble out of bed and rush to work. I would work at
least eight hours at my place of employment five days a week,
52 weeks out of the year, except for the way-too-rare vacation. I knew where I was going every weekday, what I’d be
doing and how much I’d be getting paid. And I knew that I
would be getting paid.
That was then, this is now.
This is what I did this morning.
I lost an early morning fight with the alarm because I had to
get up to take my wife to get her truck fixed. Since I have spina
bifida and adult onset tethered cord, my arms and legs spasm,
so I slowly stretched them before grabbing my crutches. Then I
stood up while stretching my high tone right ankle back to its
rightful place. Ahhh … it’s good to get everything rolling.
I crutched the six feet or so to my royal morning seat on the
toilet where I did my first of the day cath and teeth brushing
— even I, the queen of morning grogginess, don’t mix those
two up. I imagine it would be stunning if I added up all the
time I spend sitting on that toilet every day. I threw my sweats
and a hat on and put on my two ankle-foot orthoses. These are
plastic toe to knee custom braces that hold my ankles and feet
in position all day. In what seems like another life, I was once
an orthotist and I made the left brace. But I haven’t been able to
do that work for a few years now.
I crutched it to the car and took Julie to work after dropping
the truck off, then headed back home to take my first meds of
the day. Gabapentin — it’s what’s for breakfast!
I feel like I’m more productive if I get out of my sweats and
into real clothes. OK, I’m talking my idea of real clothes, so a Tshirt and jeans — I call it “Paula business extra casual.” Others
call it slovenly. Whatever. So I took a shower, got dressed and
started the long commute to my office — in my living room.
That’s right, someone’s a freelancer!
Yes, instead of my former predictable full-time jobs, I now
work several part-time gigs to bring home the bacon — well,
soy bacon in my case. The pay’s low, the security is non-existent, but the commute is the best.
So this morning I got dressed, got one shoe on and had just
found the other when the phone rang. One of my bosses tells
me there are two more cases for me that have fallen through
the cracks that need to be processed ASAP.
I hung up from her, found my second shoe again after it
somehow got lost during a single phone call, and the phone
rang again. It was the pain clinic about my appointment.
While on the line with them I got a text from Julie and a phone
L A R S O N
call from the bank. I hung up the phone, answered the text and
called the bank back. I wrestled with the bank for 20 minutes,
hung up and then got another call from my boss. We talked
about work stuff for a while as I found my second shoe again
(seriously, did it wander off on tiny feet of its own?) and finally
wrestled it on my foot.
Finally, both shoes on, I tossed my crutches aside, hopped
in my wheelchair and rushed from my living room to my other
office — my kitchen table.
This is my new, unpredictable life as a freelancer. I’m a
freelance writer and freelance compliance reviewer, and I
work part-time and sporadically for our parks and recreation
department. In between that I apply for other jobs that would
theoretically pay me regularly. Oh, and I am a community columnist for our local paper this year — that’s the gig that puts
the “free” in “freelancer.”
Far from my former 9-to-5 job, my working life now is comPAULA LARSON, 49, SPINA BIFIDA
Turf: Tacoma, Wash.
Employment: Freelancing. Lots and lots of freelancing.
Cath: Coloplast 6-inch straight tip for the ladies
Her ride: TiLite Aero Z and Walk Easy crutches
Hobbies: Bird-watching and sled hockey
Pro tip: To fit AFOs in your shoes, get diabetic, extra-depth shoes
a half-size larger and one width wider than your usual size.
Working from home as a freelancer has its benefits for Paula Larson, including being able to move her “office” to take advantage of a sunny afternoon.
SEPTEMBER 2015
31
Freelancer by
day, sled hockey
warrior by night.
Paula Larson
makes sure to get
her exercise in
every day.
pletely by the seat of my pants. On any given day I might have
no work to do, or I might get pulled in different directions by
three or more different jobs.
On the day I am writing this article, for example, I had those
morning phone sessions. Then I sent an email to my parks boss
about an off-site meeting we had the following day. After that I
worked on one of the long-lost compliance projects for a couple
of hours and submitted it while emailing that boss that the second job wasn’t making it into my email.
Engineered For Life
32
NEW MOBILITY
While waiting for the second long-lost job to
arrive in my email, I did background research
on a job I am applying for. It’s a different type
of job than the ones I had when I was more
physically able, as are all the jobs I have applied
for recently, so I have to make my resume sound
like I have an idea that I know what I’m doing
(even when I don’t have any idea at all).
Google Docs? Umm, sure, I can do that! I
was practically born doing that. I’m totally who
you need to hire.
After working on this for a while, I noticed
it was sunny and warm outside. What does a
freelancer do when it’s sunny and warm? Head
to my third office, which is outside on the chaise
lounge, of course.
So I packed up the laptop, water, phone and
a pair of binoculars (I have to be prepared to
see fabulous birds outside) and commuted to
my third home office on the deck. This is a seasonal affair and completely at the mercy of the Pacific Northwest
weather, but when it’s good, it’s very good.
Sprawled on the deck chair, I traded emails with my compliance boss — that file still won’t make it to my email — and
worked on an upcoming column.
After hours of being glued to my laptop and phone I headed
out for a two-mile “jog” down on the waterfront in my wheelchair. I appreciate being able to schedule my day however I
need to, and I’m a lot better about getting
exercise than I was when I worked 9 to 5.
After my jog I do arm exercises and use
the balance disc to work on my trunk
strength for sled hockey. I started playing
a couple of months ago and after tipping
over repeatedly, it became apparent that
my trunk was junk. The balance disc has
improved my strength and I don’t tip
over nearly as much. I can even make
turns without falling over — sometimes.
Then I headed out to pick Julie up
from work, we picked up the truck and
went out for dinner to cap off the day.
Tomorrow will be completely different, which is the best part of the freelance life. It is work I can do on my own,
at my own pace and with a maximum
amount of flexibility. It allows me to
slowly work my way back into “real job”
shape while recovering from a yearlong
health vortex. My confidence was shattered when my health went off the rails
and I really didn’t begin to get it back
until I started working again.
203.778.4711
I’m applying for more traditional
topolinotech.com
work now. I need the money and could
use the company, but I sure will miss my
commute to the sunny back deck.
A FASTIDIOUS DAY
IN THE LIFE
B Y
I A N
F
or most of my life, 48 years as I write this but 49 when
you read it, I have been an early riser. I have never been
a good sleeper, but I seem to be especially bad lately.
Initially, I credited an eagerness to see what the day held. Now
I blame an aching body, not terribly well cared for, showing
the signs of living with a spinal cord injury since I was 2 (car
versus pedestrian — I lost). Most days, I wake before the alarm
and quickly shut it off so my wife can sleep a bit longer.
Hot morning beverages
are serious business at the
Jaquiss house. The ladies
love tea, but Ian is all about
the pour-over coffee.
IAN JAQUISS, 48, T10 INCOMPLETE
Turf: Portland, Ore.
Employment: Disability Awareness Trainer
Job perk: Watching people without disabilities shed their fears
His ride: TiLite
Cath of choice: Coloplast
Husbandly duties: Letting the wife sleep in
Pro tip: Use a pour-over coffee kettle or you might as well
drink tea.
J A Q U I S S
For most of my life getting out of bed and into the wheelchair has been easy for me, and I realize now I took that for
granted. Standing to transfer is not as easy as it always was.
I am an incomplete para with full feeling, which has been a
blessing most of my life — but now a curse because I hurt.
Once out of bed, I zip to the bathroom to cath and brush
the sludge out of my mouth. Then, after keeping the dogs
from following me to the bathroom and hoovering any cat
food left, I make my way to the front of the house, through the
maze of dog and kid toys strewn about. I try to do everything
as quietly and quickly as possible to lessen the chance of waking the better halves (my wife and 9-year-old daughter). I have
learned the longer they sleep, the greater chance I have for a
more stress-free morning.
My morning duties are to let the dogs out and in, feed
them and get the various morning drinks started. I am a coffee guy. To be most precise, I am a pour-over coffee guy and
have a kettle with a long, slender spout specially designed for
making coffee the way I do. My wife got it for me, but were
my father alive, I suspect he would be unimpressed by my
fastidious morning rituals. I start another kettle for the tea
drinkers (I am looking down my nose at them in spirit while I
type that). From there it is time to prepare my yogurt parfait.
My wife makes our yogurt, thanks to a suggestion from one
of her fellow PTA do-gooders. Everything that happens in the
morning does so with the local NPR affiliate on in the background. The bosses are usually up by the time I have made
my breakfast, coffee and my daughter’s tea. We have breakfast together and then peel off to get clean and dressed. One
bathroom for three people including a soon-to-be teenager is
really not enough, by half.
Getting dressed involves little more than falling out of my
chair in a controlled way, and pulling the clothes on in the
proper order. The act of dressing is made easier by the fact that
I generally wear the same combination of things every day:
dark trousers and blue shirt. I only have one pair of shoes suitable for work — in some ways, being a person with a disability
is cheap. Once the buttons are buttoned and the shoes are on, I
climb back into the chair, say goodbye to my wife and daughter, and drive to work.
Traffic in Portland is generally great and my office is pretty
close, so the commute is easy. I work for Oregon Health & Science University as a disability awareness trainer and community outreach specialist. Primarily I teach participants how to
be comfortable around people with disabilities.
Several years ago OHSU realized that few people with
disabilities worked there. To better understand why, OHSU
conducted enterprise-wide surveys and focus groups of its
employees with disabilities, and the results largely showed that
they felt excluded because few people talk to them, and nonSEPTEMBER 2015
33
Ian’s brother got him a Simpsons 10th Anniversary Grill as a gift and it
quickly became one of his most prized possessions.
The Para Ladder ®
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34
NEW MOBILITY
disabled people were not talking to them because they were
afraid of saying the wrong thing. The idea that someone would
not talk to me because they were afraid of offending me was
foreign. However, I have heard that explanation so many times
since I have been at OHSU that I believe it.
I lead the training by telling the class not to ask how a person acquired his or her disability — focus on the person. Then
I always tell the class how I acquired my disability, and if the
class goes well, they always forget that part by the end.
I also do outreach and help to recruit both people with
disabilities and veterans, working with job coaches who have
clients with disabilities as well as with groups and agencies
that serve veterans. These responsibilities are daunting, but it
is incredibly rewarding to work for an institution that values
diversity so much. And, I am thrilled to report that OHSU is
making progress in both categories because of an institutionwide commitment to both those groups.
My position is located in the Affirmative Action and Equal
Opportunity department where I work alongside civil rights
investigators, a compliance analyst and a tremendous administrative staff. Ours is a small department, but with our
partners we have a great reach. OHSU has a main campus,
largely contained at the top of a large hill, and a smaller, growing campus along the Willamette River in southwest Portland,
and my office is between both campuses. I have meetings and
conduct trainings on both, and so consequently I cover a lot
of ground, in every way. I also meet, see and work with a lot of
people. And, like other people with disabilities I know, I have
memorized where the best bathrooms are on the campuses.
Interestingly and kind of sadly, I have yet to meet a fellow
OHSU employee who uses a wheelchair or even a scooter.
Although it’s cool being the only person in a chair here, I am
bummed that I don’t get to lord my cool titanium chair with
red spokes over lesser chairs.
The commute home is often slower than the morning drive,
but still it is not bad. In the summer, I assume cooking and
cleaning duties for the family. Because the weather is generally perfect here in the summer, I grill almost every night and
we only use charcoal. Food, coffee and beer are three of my
biggest passions, and if all goes well, a good day will encompass all three. We try to stay outside as long as light provides
or until the kid demands to go to bed. Actually that has never
happened, but allegedly there is a first time for everything.
When we go inside, I like to get out of the fancy wheelchair as soon as possible. The newly acquired aches, pains and
spasms that are affecting my sleep and creeping into my waking hours are less bothersome when I’m out of the chair.
My nighttime rituals involve getting the kid into bed, making popcorn using a popping device on the stove, and reading.
I vowed to the kid that I would give up television for a year and
I have been mostly good, other than the Letterman finale and
one NBA finals game.
My cathing program consists of “as needed” or when I
haven’t gone in a while. That has worked well, generally. Sleeping is my biggest challenge right now, but I am working on it.
A TYPICAL DAY AS ELLEN
B Y
E L L E N
S T O H L
“Woke up, got out of bed, dragged a comb
across my head ...”
Photo by Alexander Slanger
A
h — if it were only that simple. As an incomplete
quadriplegic of 32 years, my mornings start out a bit
slower. On Tuesdays and Thursdays I teach at Cal
State, Northridge, so the alarm rings at 6:50 a.m. On Mondays
and Wednesdays I have until 7 a.m. and on Fridays until a
glorious 7:15 a.m. Thankfully, the weekends are usually alarmfree; time to sleep in, enjoy a good roll in the hay, or both!
I usually wake throughout the night. There are spasms and
pain to deal with, along with a snoring husband. Add in dogs,
cats and a kid that all consistently find their way into our bed
each night, and it becomes quite full. But honestly, even alone
I have trouble sleeping, so I wouldn’t have it any other way. I
usually drift back into a dream state an hour before the alarm
sounds and wake up in a groggy fog begging for another fivemore-minutes. My daughter’s sing-song, “wakey, wakey,” or
the melodic tune my husband, David, has chosen to arouse the
masses usually clears the fog.
Once alert, I lie in bed a few minutes and try to reflect. I
read the canvas print across the room that reminds me to “Be
thankful, live fully, laugh often, and appreciate life.” I take the
words to heart, then slowly use my arms to straighten my legs,
remove the knee pillow, and push myself into a seated position.
I usually have enough strength to achieve this on my own, but
occasionally need a strong hand to assist me.
Once up, the transfers begin. Most are fairly easy, but I still
need support so I don’t fall. I fell a few years ago and broke my
leg in three places, so now I’m overly cautious. David helps in
the morning, and since we have been together 21 years, he is
well aware of my needs. From bed to chair, chair to toilet, back
to chair, to shower, to chair again — I glide easily from one
to the other because everything is the same height. I have the
Toilevator toilet seat riser mounted under my commode. No
one else can touch the ground when seated on it, but it makes
transfers a breeze. I slide over effortlessly, pull each leg up to
the seat of my chair and grab my catheter kit — a mirror, book
light and my catheters. I position the mirror, adjust the book
light, find the urethra and wheeeee, literally.
I’m lucky I have enough finger control to cath independently — at least, most of the time. Occasionally, the urethra is uncooperative and I need an extra set of eyes and hands to get the
job done. I recently got Botox shots in my bladder and that has
made urinating a breeze. No leaking and a consistent schedule
mean only a few trips to the toilet a day. Fewer transfers equal
greater independence. Bowel movements aren’t as simple or
consistent. My injury is incomplete so I know when I have to
go, but keeping the right consistency to make the process run
smoothly is difficult. I try digital stimulation every morning to
ensure the bowels are emptied. This is usually a quick process
ELLEN STOHL, 51, C8-T1 QUAD
Turf: Northridge, Calif.
Employment: University Instructor
Getting around campus: Slips a motorized Go-Ped
kids’ scooter under her front casters
Bathroom gear: The Toilevator
Shopping for the fam: Amazon Prime Fresh
Pro tip: Bladder Botox — it’s not just for wrinkles.
that helps me maintain confidence throughout the day.
Once up and showered or “spit-bathed,” I get dressed,
put on a little make-up and head for the kitchen. I hate the
make-up process. My gimpy fingers find it hard to create a
straight line, but without a little color I look like a ghost with
no discernable facial features. I’m thinking about permanent
make-up, but find my husband resisting the idea. He tells me
I don’t need it and am beautiful as I am. I appreciate the sentiment, but let’s be honest, the rest of the world does not view me
through his loving eyes. I figure a dab of eyeliner, a feather of a
brow and some naturally colored lips that don’t need to be applied daily would make me feel prettier and move my morning
along at a much quicker pace.
David is in charge of breakfast for everyone and up until
this year I was responsible for packing my daughter’s lunch.
SEPTEMBER 2015
35
36
NEW MOBILITY
Photo by Alexander Slanger
Suddenly at 12, Zoe has taken over packing her own lunch, but
I still get the final word by checking the contents for a wellbalanced meal and adding a Lunchbox Love note. In exchange,
Zoe makes me a cup of coffee to go and stirs up some Mega
Greens so I can wash down a handful of vitamins. One final
check for homework, backpack, work items, etc., and we hit
the road. I drive my daughter in my adapted Scion, and my
husband picks her up.
On teaching days, I use a Go-Ped scooter under my front
casters to transport me around campus. I can’t get it into my
car alone, but at a university there is always someone to help.
I’m hoping to get a Smart Drive to increase my mobility, but
insurance is slow and hard to convince. I have been assigned a
classroom in my department’s building so I can easily access
the copiers and office support. I also use the same class for
both courses and have my own locking file cabinet in the classroom itself. This is a rarity for college instructors, but without
it I would have to tote around a ton of stuff. Teaching itself is
easy for me. I use the computer to provide visual support for
course content and can write on the whiteboard if need be. I
plan my semester carefully so I can have everything ready, and
I use my experience as a person with a disability to enhance
my lectures. I teach the Psychological Foundations of Learning
and Teaching class, so we cover a lot of content on individual
differences and needs.
After work, I take an adaptive phys-ed course on campus
where I get range-of-motion and a personalized exercise
routine. Tuesdays and Thursdays are full days, and by the time
I get home, I’m exhausted. Luckily, David plays tennis those
nights so it’s just my daughter, my PCA Jeff and me. Jeff generally gets take-out for us or we put together a small meal. I often
cook the other nights, using David or Jeff as my sous-chef.
They are also in charge of dishes. We have a weekly housekeeper, but daily upkeep is a joint effort. I need things neat
Photo by Jonny Vincent
(Right) Everyone does their
part when it comes to household responsibilities to keep
the Stohl family, pictured
here doing their best Simpsons impersonation, running
smoothly. (Below) Ellen relies
on a converted Scion to get
around, including to and
from her job teaching at
Cal State, Northridge.
and organized to function well, so everyone does their part.
Amazon Prime and Prime Fresh have reduced the shopping
burden and made life a lot simpler.
My daughter is more independent now, but I still check
homework daily and go over upcoming events. On days I don’t
teach, I grade, write, audition or pursue some other interests
or endeavors. I find I’m always doing something. Every other
Wednesday, I take a spa day and get my nails done, and on
Fridays, I volunteer at my daughter’s school. Weekends are
usually family time and include lounging around, reading,
entertaining or catching a film. Most days end shortly after
dinner. On a rare occasion I’ll go out with my girlfriends for
happy hour, but I prefer to entertain at home. My house has
been designed to meet my needs and in it I have the environment and support to function independently. I am thankful
every day for all that I have. I know life using a chair makes
everything harder. But as Kirk Kilgore, an amazing man and
quadriplegic, once told me, “Walking might make life easier,
but that doesn’t mean it would make life better.”
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NEW MOBILITY
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SPOTLIGHT: LITTLE ROCK, ARK.
Little Rock is not usually the first
choice when thinking of a vacation destination or a city to move to, but I feel
it is unjustly overlooked. I wasn’t planning on living here permanently when I
moved to the city in January 2002 from
Florida, but I quickly fell in love with
the city’s beautiful scenic views, rolling
hills and friendly people. I
also liked that I didn’t have to
spend hours on the interstate
during rush hour and that it
seemed as though everyone
knew each other, despite it
being the largest city in the
state. I didn’t live here long
before my life-altering injury occurred,
but I already felt at home and wanted
to stay. This is a great place to raise a
family and the city is continually making changes to the built environment to
become more inclusive for all residents,
no matter their age or abilities.
GETTING AROUND
I am blessed to have a car with hand controls so I’m able to get where I want to go,
but visitors or residents without access
to adaptive vehicles have a much harder
time getting around the city. It’s best for
visitors who use wheelchairs or mobility
aids to stay downtown since it’s easier to
travel by chair or bus from this area. The
Central Arkansas Transit Authority does
have accessible buses (and some inaccessible trolleys downtown), but not all bus
stops are accessible, and to my knowledge the routes don’t cover all parts of the
city. LINKS Paratransit is available, but
you must submit an application, provide
proof of disability and call a minimum of
24 hours in advance. There is an option
to rent accessible vans, however, through
www.wheelchairgetaways.com, which has
partnered with a local business, Accessibility Specialties.
PLACES TO GO
Many different areas are worth highlighting, but the most accessible area
is the vibrant River Market district in
SKINNY ON THE CITY
With approximately 200,000 people calling it home, Little Rock is the most populous city in Arkansas. Since it is also the capital, it was once the home of former
President Bill Clinton, when he was governor, and you will find his presidential
library and museum situated right on the Arkansas River bank.
The riverfront
area is home to
many inclusive
events.
Photo courtesy of Arkansas Department of Parks and Tourism
MY TAKE
BY ERIN GILDNER
Learn
about the
Arkansas
Chapter on
next page
downtown Little Rock. You could spend
your entire stay in this area and never
run out of things to do. The neighborhood is home to amazing locally crafted
beers, unique restaurants, and lots of fun
MUST SEE, MUST DO
Flying Fish of Little Rock: This dining
establishment almost always has a
line out the door, but it’s worth the
wait. The fried catfish is some of the
best I’ve ever had, and you can also
get delicious healthy grilled options.
William J. Clinton Presidential Center & Park: One of the largest presidential library archives in American
history also has a full scale replica of
the Oval Office. The surrounding park
showcases native wildlife and river
life of the restored wetlands habitat.
Big Dam Bridge: This pedestrian/cyclist bridge is beautiful at night, when
it is illuminated by LED fixtures with 16
million possible color schemes.
shops and art galleries. You can visit the
Museum of Discovery, the Witt Stephens
Jr. Central Arkansas Nature Center, William J. Clinton Presidential Center &
Park, and also the Heifer International
headquarters and Heifer Village. Street
parking can be difficult to find, but plenty of small parking garages and lots are
located close to the action with accessible
parking. The sidewalks are fairly easy to
travel and curb cuts are located everywhere, although not always in the best
shape. At the farmers’ market, open every Saturday from May to October, you
can shop for Arkansas-grown produce,
locally sourced products and meat, and
handmade local arts and crafts.
Two must-see bridges located along the
scenic 15-mile Arkansas River trail in the
River Market: the Junction Bridge and the
Clinton Presidential Park Bridge. Junction
Bridge, spanning from River Front Park to
the Verizon Arena in North Little Rock, is a
100-year old “lift span” bridge transformed
into a pedestrian/cyclist bridge that has
an elevator. The Clinton Presidential Park
Bridge is a very accessible ramped multi-use
trail that closes the loop on the River Trail.
SEPTEMBER 2015
39
Chapter Check-In
Arkansas Chapter: Getting Things Rolling
Every year many people approach United
Spinal about starting a new chapter where
they live, and every year many of those same
people discover that getting a new chapter
off the ground is no small feat. Even with the
support of the parent organization and a fervent desire to help the local SCI community,
the logistics of making it happen and making it successful can be tricky. Erin Gildner
learned that first-hand as she worked to start
the Arkansas chapter.
“It has been frustrating,” Gildner says.
“There are a lot of moving parts to get this
done. Our state is very rural and we don’t have
a model spinal cord injury center.”
Gildner, a paraplegic, began to see the
need for a new organization when she started
working in state government as a grant
coordinator in 2009. “I just became very
interested in public health and the lack of
participation and employment for people
who have disabilities, especially those who
“We haven’t really had a forum that’s a safe
place for all the groups to meet and to network,”
says Gildner (right). “That’s where I am thinking
the chapter can bring a novel approach.”
use wheelchairs,” she says. “I was going out
and working with all these people in state
government and it was such a novel concept
to them that somebody with a disability
was working. It started to really get under
my skin, and I started to do a lot of research
about what I could do.”
Arkansas has a Spinal Cord Commission that runs an SCI registry and helps low
income people with spinal cord injuries,
but Gildner sensed that the local SCI community needed more. “There are so many
people and organizations all over the state
that are doing good work, but they’re not
connected and there is not a unified voice,”
she says. “We haven’t really had a forum
that’s a safe place for all the groups to meet
and to network. That’s where I am thinking
the chapter can bring a novel approach and
give them that space to be able to interact
and know where we want to go and what we
want for our state.”
Gildner first contacted United Spinal’s
director of chapter relations, Nick LiBassi,
about starting a chapter in 2012. On the
heels of her first advocacy trip to Washington, D.C., she and an Arkansas friend
started discussing the holes in the state
support system and brainstorming how they
could address them. But as it often does,
life intervened. Finishing graduate school,
raising kids and having difficulties finding
the right professional to work with kept
delaying the chapter’s launch. The whole
endeavor nearly fell apart this year when
Gildner’s family almost had to move because her husband took a new job.
Luckily the family stayed put and Gildner recently found the medical professional
she felt the chapter needed for its board.
“Finally having that piece of the puzzle and
having her on board, I think now we’re going to take off,” she says.
Gildner has already built a successful
Erin Gildner (front left) and other Arkansas members met with U.S. Sen. John Boozman, R-Ark.,
(back middle) at the 2014 Roll on Capitol Hill.
online community on Facebook for Arkansas
women with spinal cord injuries, and she
hopes to expand on that. She is also looking
at offering adaptive sports and assembling a
registry of accessible parks. Her biggest focus
is helping bridge some of the gaps in state
services. “The transition from pediatric to
adult health care and the community supports
around that are very, very weak, and there are
a lot of families that don’t realize that life can
be just as fulfilling as an adult with SCI as it
is for anyone else,” she says. “There are low
expectations a lot of the time.”
Gildner hopes to have the chapter off the
ground and running by the time this article is
published. “I’ve met with lots of family members and doctors and they’re just so excited for
the potential,” she says. “We call ourselves a
chapter and we are, but we’re just emerging.”
To start a United Spinal chapter or support
group where you live — or to find out more
about the organization or if there are chapters or support groups around you — contact
Nick LiBassi at [email protected] or
718/803-3782, ext. 7410.
United Spinal Association’s mission is to improve the
quality of life of all Americans living with spinal cord
injuries and disorders (SCI/D). Membership in United
Spinal is open to anyone with an interest in SCI/D. For
more information on the benefits of joining,
visit www.unitedspinal.org or call 800/404-2898.
40
NEW MOBILITY
SPINAL CORD RESOURCE CENTER
Questions? We Have Answers!
800/962-9629
www.spinalcord.org/resource-center
News
United Leads Uber Protest
United Spinal Association, Taxis For All
Campaign and other wheelchair-using advocates held a “roll-in” outside Uber’s West Side
headquarters in Manhattan July 30, calling on
the company to end its discriminatory practices and to start serving wheelchair users, blind
people and other disabled communities in New
York City and around the United States.
The protestors urged Mayor Bill de Blasio,
the City Council and the Taxi and Limousine
Commission to enforce rules and pass new legislation that would require Uber and other appbased transportation services to serve wheelchair users. “Uber’s zeal to replace the soon to
be 50-percent accessible yellow cab industry
— coupled with its refusal to operate even a
single accessible vehicle — is jeopardizing the
taxi option for wheelchair and scooter users,”
says James Weisman, president and CEO of
United Spinal Association. “The needs and
rights of people with disabilities should not be
ignored on the 25th anniversary of the Americans with Disabilities Act,” he adds.
TLC records show that at least 20,777
Uber vehicles are on NYC streets, but not
one Uber vehicle is wheelchair-accessible.
Accessible taxis typically have a ramp that
allows wheelchair and power chair users to
roll into and out of the vehicle.
Holding signs reading “Uber UNFAIR,”
“Uber: NOT innovating, JUST discriminating” and “Uber: Stop Your Old Time Discrimination,” wheelchair and scooter users and
The lively protestors made it clear that they
will not sit by and idly let Uber continue to
ignore the disability community.
The First Annual Disability Pride Parade had a great turnout on a beautiful New York summer day.
their supporters noted that 25 years after the
Americans with Disabilities Act became law,
the six-year-old company has consistently rejected direct appeals to offer accessible service
here or in other cities
“Uber says it’s revolutionizing the taxi
business, but what it’s really doing is engaging
in old-style discrimination,” said protest organizer Jean Ryan, a Taxis For All leader and a
vice president at Disabled In Action.
Disability Pride Parade
a Success
United Spinal’s members and staff were out
in full force to celebrate New York City’s
First Annual Disability Pride Parade on July
12. United Spinal marched up Broadway
alongside our New York City chapter and
many other advocates and organizations from
around the Metropolitan area to celebrate disability empowerment.
Among the 3,000 parade participants were
people using wheelchairs, canes and service
dogs, and people who were waving flags and
banners for their individual causes. All were
united in the mission to raise awareness on disability rights and to call for improvements in
accessibility, health care and employment.
Former U.S. Sen. Tom Harkin, D-Iowa,
who sponsored the Americans with Disabilities Act 25 years ago, served as the parade’s
grand marshal. He commended the city’s
progress toward accessibility but said the high
unemployment rate for people with disabilities
shows there are still remaining struggles. “I
may be retired from the Senate, but I’m not
retired from the fight … we know that when
companies hire people with disabilities they
get the best workers, the most loyal workers,
the most productive workers,” said Harkin.
July was designated as Disability Pride
Month in honor of the 25th Anniversary of
the ADA. New York City planned a monthlong series of events to celebrate New Yorkers with disabilities, including an exhibit at
the Brooklyn Historical Society titled “Gaining Access: The New York City Disability
Rights Movement.” It‘s the first museum
exhibition about the New York City Disability Rights Movement.
Great Turnout for Women
with Disabilities Conference
United Spinal Association was proud to cosponsor the sixth annual “From Within” health
conference for women living with physical
disabilities hosted by Independence Care
System on July 24, at John Jay College in New
York City. Women with disabilities from all
around the tri-state area attended this official
ADA25NYC event.
This year’s From Within was the largest ever, with over 150 guests attending the
event. Victor Calise, commissioner for the
Mayor’s Office for People with Disabilities, a
former employee of United Spinal and a supporter of From Within for many years, was
invited to speak at this year’s conference.
Other co-sponsors included the Mayor’s
Office for People with Disabilities, the MS
Society and the CUNY Coalition for Students with Disabilities.
SEPTEMBER 2015
41
News
Employee Appreciation Day
On July 17, the staff of United Spinal celebrated
Employee Appreciation Day at its Fort Totten site.
Employees from all divisions of the organization
gathered for a day of fun in the sun, including
lunch, games, cake and the awarding of the Employee of the Year award. This year’s award went
to Bill Fertig, director of United Spinal’s Resource
Center (pictured at Roll on Capitol Hill, right).
42
NEW MOBILITY
VetsFirst Testifies on
VA Programs
VetsFirst Director Ross Meglathery testified
before the House Committee on Veterans’
Affairs Subcommittee on Economic Op­
portunity regarding the VA’s Vocational
Rehabilitation and Employment Program.
Meglathery stressed the need to provide
disabled veterans with appropriate training
to rein­tegrate into society and the workforce.
He noted the VR&E program is of great importance to VetsFirst, but added the program
“lacks the resources needed to best assist all
disabled veterans in returning to employment.” Also, the VR&E program needs to
expand the number of years that qualified
veterans are eligible for it.
Currently, veterans are eligible for
VR&E within 12 years of active military
separation or when the VA notified them of
their qualified service-connected disability.
This isn’t enough time for some vets, says
Meglathery, and he used his own experience to explain why.
Meglathery says he was 30 when he first
saw combat and “I cannot imagine what it
would have been like to experience that as
an 18 year-old.” If a vet becomes disabled
at 18 as a result of his service, then his 12
years would be up by the time he was 30.
“But 30 years was not enough life experience for me to know myself, as it takes time
to come to terms with the trauma of war. For
others, this may likely be the case as well.”
At 30, a vet disabled at the age of 18 during
his first tour would already have run out of
time to be eligible for VR&E.
Meglathery also says VR&E caseloads
are still too high and resources are not sufficient to provide timely results. He asked
Congress to appropriate more funding and
support efforts to properly staff VR&E. He
suggested partnering with nonprofit organizations that provide in­tensive services
needed to assist veterans with significant
disabilities in returning to and remaining
in the workforce.
Meglathery emphasized the real indicator of VR&E’s effectiveness is in the longterm success of the veterans it helps. He
suggested the VA monitor veterans’ employment for at least a year, with a counselor
periodically following up. This would keep
tabs on the effectiveness of the program and
also hold employers accountable to their
com­mitment to support VR&E.
Meet Ross Meglathery, New Director of VetsFirst
About Me
My Vision
As the newly minted director, I wanted to take
With so many veterans service organizations
the opportunity to introduce myself and discuss
out there, one may ask what makes VetsFirst
my vision for the direction of VetsFirst. First off,
special. We are different and special based on
I want to let you know just how delighted I am to our history, our membership and the actions
be working for VetsFirst and to be advocating for we take on behalf of the veteran and disabled
our United Spinal Association veterans. I would
communities.
also like to recognize how fortunate I am to be
Our history is nearly 70 years in the makworking under the leadership and tuing, and in that time, we have led the
telage of Jim Weisman, who as I am
efforts for access and reintegration
sure you know, has taken the helm
for all disabled Americans. On the
of United Spinal as its CEO. He
25th anniversary of the passage of the
has served the members of United
Americans with Disabilities Act, it is
Spinal for over 35 years, and I am
critical to recognize it would not have
appreciative that I can look to such
been possible without the post-World
an experienced advocate for any and
War II veterans’ demand for access
all support. Additionally, I would
starting 45 years prior.
also like to thank Joe Gaskins for his Ross Meglathery
It is not just our history of advoleadership. He has positioned Jim for
cacy and the veterans who carried on
success as CEO and I have the continued good
that legacy where VetsFirst makes its mark. I
fortune to work with Joe to fundraise in order to
want to continue to build upon several areas
support future VetsFirst initiatives.
in which we are already leaders and to expand
A little about myself: Upon graduation
into new territory. Currently, as a Department of
from college, I was commissioned as a MaVeterans Affairs-recognized National Veterans
rine officer. In this capacity, I served a tour in
Service Organization, we excel at processing
Western Sahara, Africa, as a United Nations
veteran benefits claims and appeals. Our Ask
military observer and two combat tours in Iraq
VetsFirst website provides accurate informaas an artillery officer and joint terminal attack
tion with a targeted response time of 72 hours.
controller. Upon leaving active duty, I became a Recently, we established a pilot program with
national security and defense consultant where
Vets101, an all-in-one veteran issues informaI worked supporting the federal government.
tion site. This partnership builds on the success
While serving in the Marine Corps Reserve, I
of Ask VetsFirst and helps VetsFirst plug into all
was selected to become a Congressional Marine issues affecting veterans.
Fellow where I worked for a member of ConOn the advocacy front, we help shape
gress who was on the House Armed Services
legislation that supports veterans and disabled
Committee. Following the fellowship, I went
Americans by informing members of the execuback to consulting but realized it was not my
tive and legislative branches about the issues
passion. Therefore, I attended graduate school
affecting our community. We do so through
and earned a master’s degree in public adminworking with government staff, the health care
istration. As luck has it, VetsFirst was looking
and veteran-related business community, and
for a new director, and that is how I arrived at a
through testimony on Capitol Hill.
job that supports my goals of serving my fellow
I want to expand VetsFirst into new areas. I
countrymen and the veteran community.
want us as a community to identify innovative
As a combat wounded veteran, I am excited
technologies to improve quality of life for our
to work for an organization with an unbroken
members. My hope is that this will be a two-way
connection to the injured service members who
street, where VetsFirst will learn about new techfounded it. Our paralyzed veterans demanded
nology while our members inform us of their
to have their voices heard when they came
needs, so we can be more responsive to them.
home and saw they were not afforded the same
In addition to identifying new technology
opportunities as their fellow citizens. They
and medical treatments, we will build relationwanted to get back to work and reintegrate into
ships with industry so they partner with us in
society. It was not special treatment they sought
testing and evaluation. As a test bed for industry,
but, rather, equal access. Great strides have been
we hope to obtain low-cost equipment for our
made for our disabled community. However,
members. Ultimately, a VetsFirst’s seal of apthere is still more that can be done.
proval will be sought as an industry standard.
Did You
KNOW...
Disability
etiquette
Tips On Interacting With People With Disabilities
Understanding the (ADA)
Americans with Disabilities Act
Fire Safety for Wheelchair
Users at Work and at Home
A Publication of
A Publication of
United Spinal Association
produces more than 30
brochures and pamphlets
on subjects like Disability
Etiquette, Fire Safety
for Wheelchair Users
at Work and Home and
Understanding the ADA.
You can download them
for FREE or order printed
copies on our website at
www.unitedspinal.org
SEPTEMBER 2015
43
BACK TO SCHOOL:
Stories of Success on Campus
B Y
S T E P H A N I E
D .
L O L L I N O
G
oing to college is a major life
change for anyone, and it may
present an especially daunting challenge for wheelchair users. Yet
students who use wheelchairs frequently
report they can usually find their way
around accessibility problems. The main
issue, they say, is figuring out how to
make the “back to school” transition.
“Once you’ve set the goal that you’re
going to do it,” says Kris Cichowski,
founding director of the LIFE Center at
the Rehabilitation Institute of Chicago,
“make sure you’re medically ready. Do
you have your care down? And maybe
that doesn’t mean you do it yourself, but
can you instruct other people? Have you
put yourself out in the community? Test-
Visit the Campus
“I would encourage people to reach
out and meet students at your
prospective school, see where you’re
going to live, get an idea where the
dining hall is, things like that,” says Everett Diebler, 31. Everett, who has CP,
attended Millersville University near
Lancaster, Pa., and has a bachelor’s
in psychology as well as a post-baccalaureate certification. “Be sure you
know where your classrooms are going to be, check out the housing halls.
These are things you might not get a
sense for when you’re on a tour.”
44
NEW MOBILITY
Living in a dorm helped Carrie learn to manage
her care and live independently.
ed the waters? I don’t think there’s ever a
time you can say, ‘Yes, I’m totally ready
right now,’ because a lot of times you have
to jump off and see how it works.”
Following are stories of people who
took that jump and discovered they
handled college just fine.
Going Away to College
Carrie, 32, C5, DePaul University,
Chicago
Carrie became a quadriplegic in 2003
while attending DePaul University
in her hometown of Chicago. When
she was ready to return to school, she
discovered her dorm was accessible and
all she needed was just a little assistance.
Fortunately it was easy to find.
“When I went back to school, there
were all sorts of accommodations.
There were people to take notes and I
had a personal assistant who’d come
to class with me,” says Carrie. “Teachers are willing to make accommoda-
tions — they’ll even move the classroom
if needed. For taking tests, I would
dictate the answers to my computer,
and the professor was always OK with
it. Sometimes I could email stuff in, so
keeping up was much easier than you
would think. It was great to be right on
campus, in the city and not at home.”
Carrie’s mother, Pamela, was
astounded when her daughter decided
to move onto campus, especially since
she had only spent one semester after
her injury commuting back and forth
from home: “She lived in a dorm room
by herself, and her personal assistants
would come and go. And then unbeknownst to us, prior to graduation, she
found herself an apartment.”
Carrie has been living independently
ever since.
Commuting From Home
Nick, 37, C5-6, Chicago Community College and University of Illinois, Chicago
Nick sustained his injury just as he
Commuting from home proved a good option
for Nick while he finished his degree.
“It was three months after I
was injured that I went back to
school, and my family was over
500 miles away. Now, I have a
master’s degree in community
economic development, and I’m
going for my Ph.D.”
– Megan, 38, who became paraplegic at age 18
and attended the University
of Texas at Austin
Also, he had a reliable support system
on campus. “My mom actually works at
my college,” says Patrick. “So she would
come to help me whenever I needed. It
was wonderful. I graduated with a degree in business and engineering. I know
it sounds weird, but with having the accident, so many more opportunities have
opened up for me. I think I have more
opportunities now than before.”
Have a Support System
“My family was within an hour away,
and the Hershey Medical Center was
close by,” says Paul Fogle, 31, who has
a bachelor’s in public policy from Penn
State Harrisburg. He has a pulmonary
disability and uses a scooter for mobility as well as a ventilator at night. “If
there was an emergency, I would call
my family.” If your school is far from
family or your own doctor, be sure to
create a new support system, whether
it be friends or getting support from a
local United Spinal chapter or Center
for Independent Living.
was about to finish high school, and he
recognized college would be especially
important for him. “Since my level of
injury is C5-6, I knew I wouldn’t have
many transferable skills to offer the
marketplace without a degree,” he says.
He began school by taking it slow.
“I started off at a community college
because I was still becoming independent and working through some
daily routine issues.” He also had a few
medical setbacks but was determined to
complete his degree.
By the time he started his undergraduate social work studies at the University of Illinois, “I was almost four years
post-injury and completely independent
with personal care and driving. I rarely
utilized services from the Disability
There’s no need to rush back to school, says
Patrick. Do it on your own schedule.
Resources Office and only experienced
one issue with one of my classes being
scheduled on the second floor without
an elevator. By the next day, the classroom location was moved.”
Nick continued to commute from
home. Since the majority of his classes
were all within a half-block radius, living
on campus offered no extra convenience.
He earned a bachelor’s as well as a master’s degree in social work.
Jack, 67, T12-L1, University of Illinois
Jack became paraplegic many years ago
at the age of 26 just as he was about to
graduate from college, and he agrees
with Patrick that having a spinal cord
injury can change the course of your
life, inadvertently leading to unexpected
possibilities. “I broke my back two weeks
before I graduated from undergraduate
school,” he says. “I had a job waiting for
me in Aspen, Colo., as a surveyor and
land planner. I often tell people that if
I had taken that job, I’d probably be a
It’s OK to Take Your Time
Patrick, 29, C5-6, Drexel University,
Philadelphia
Patrick sustained a C5-6 injury at age 21,
and as he was still recovering six months
post-injury, he decided going back to
college full-time was too much. “I tried
pushing around every day, and I was
like, I’m not ready for this.”
He took an online class to start, and
by the next term went back to classes as
he was stronger and felt more confident.
Jack credits his SCI with changing his career
path from ski bum to architect.
SEPTEMBER 2015
45
burned-out ski bum bartender in Aspen
right now, as opposed to a professional
with my own business.”
After earning his bachelor’s, Jack
went back to graduate school to get a
degree in architecture.
Figure Out Your Care
Before Classes Start
Molly, 25, C5-6, Stanford University
and University of Michigan
Since Molly became a quadriplegic at
15 while still in high school, she began
learning how to handle her care in a
classroom right away. “My sophomore
year I was part-time,” she says. “I did
two classes in the hospital in the fall, and
then three in spring. Then my junior
year, I went back pretty much full time.”
She went to summer school, determined
to graduate on time, so it’s no surprise
she tackled college head-on as well.
“Basically, I decided I was going to go
where I wanted to go to college and then
figure out the accessibility part later,”
says Molly. “I went to California with
my mom specifically to look at schools.
Have an Assistance Plan
As Molly discovered, most colleges and
universities offer no help securing personal assistance services or aides. Therefore, it is best if you have your services in
place before you show up on campus.
If you receive personal assistance
services, speak with your current service
coordinator and let them know where
your school is located. Some Medicaidfunded programs will allow you to keep
your services uninterrupted even in other
states, and will help you to coordinate
with a local agency.
Paul says he already had personal
assistance set up and just needed a large
enough living area to accommodate his
aide. “Penn State has pretty conducive
housing arrangements for folks needing
attendants,” he says. “My dorm room was
like an apartment suite, so there were
four single bedrooms, one common living
area, a kitchen, bathroom and living area.
It was pretty big.” His attendant did not
get a bedroom, but since she was on duty
at night, it didn’t matter. “She hung out in
the living area and it worked,” he says.
46
NEW MOBILITY
Locking down your plan for hiring caregivers
can relieve the stress of being away from home,
says Molly.
I liked Stanford, so I applied and got in.”
Two weeks before the term began, Molly
pulled into town, moved into her dorm
and began learning to live on her own.
It turned out managing her daily care
was more stressful than she had anticipated. “I was hoping Stanford could help
me find caregivers, or could at least suggest
some agencies or help me advertise,” Molly
recalls. “They basically said that was not a
service their office was going to provide;
they weren’t going to help with that.”
After dealing with a series of incompetent caregivers, Molly found a way to
do many tasks for herself. “There were
a couple of days where no one showed,
so that meant I couldn’t get out of bed,
couldn’t get dressed, couldn’t go to class.
You can imagine living 2,000 miles from
home, not knowing anyone or having
any friends and starting classes, how
hard that was. That was really stressful.” Her solution: “I stopped using the
caregiving agencies and advertised on
campus to hire grad students or their
spouses.” That was the magic combination. Once Molly discovered a reliable
pool of responsible people she could
train to be her caregivers, getting on with
school became her main focus. However,
since they were not eligible for payment
from government programs, she had to
pay them out of her own pocket.
Molly finished college and will start
medical school at the University of
Michigan this fall.
Nico, 21, C3-4, University of California
at Berkeley
Nico, who is quadriplegic as the result of
an injury at age 15, is having a fantastic
caregiving experience at college. He
is in the Disabled Students’ Residence
program offered by the University of
California at Berkeley.
His mother Audrey says, “It really is
the best thing that has ever happened to
him, and to us, because they take care
of everything that worried me about
sending him to college. It has been so
wonderful because he is encouraged
and enabled to do things himself, and
for better or worse, there’s always a responsible adult around in case he needs
one. At this point, we are so happy that
he is there and that he is feeling independent. He has a peer group of other
students who have major disabilities.
They’re all intelligent kids, they’re all
getting on with their lives, and it’s kind
of like this whole band of young people,
who are like, “OK, so I got a problem.
What’s your problem?”
For parents like Audrey, watching their kids
discover newfound independence at college is
profoundly rewarding.
Stephanie D. Lollino, executive editor
of FacingDisability.com, is a television
producer and writer who has worked
with the website since its inception. Her
extensive background in research, media
and creative communication turns the
task of improving the lives of others into a
dream job. “Making people aware of SCI
and everything that goes along with it is
something I’m really proud to be a part
of.” For more information from FacingDisability.com on going back to school,
visit www.facingdisability.com/spinalcord-injury-videos/education
Resources
• Centers for Independent Living, www.
ilru.org/projects/cil-net/cil-centerand-association-directory. Located
nationwide, CILs are a great resource for
finding personal assistants, learning the
accessibility of a new city and more.
• FacingDisability.com, www.facingdisability.com/spinal-cord-injury-videos/
education. Although primarily operat-
ing as a resource-packed website, FacingDisability.com has other programs as well and
can be reached by phone at 312/284-2525.
• United Spinal Association, 800/404-2898;
[email protected], www.unitedspinal.
org. United Spinal has hundreds of chapters
and support groups across the country that
can be tapped as part of your support system.
Joel, 34, sustained a T11 injury during high school and
wanted a college with a schedule that would enable him
to work full-time while going for a degree. He decided
on Northeastern Illinois University and discovered, to
his relief, that accessibility was not an issue. “As long as
I was able to enter and exit buildings, classrooms and
the all-important washroom — I was OK,” he says. Later
Joel attended Dominican University for grad school and
visited the campus beforehand to make sure it met his
requirements for accessibility.
Get to Know the Office of Disability Services
It’s best to meet with your school’s Office of Disability Services a few months
before you’re due to show up on campus. This is when you’ll discuss what
accommodations you’ll need, such as
ensuring all of your classes are held in
accessible buildings. The school will ask
for medical documentation, and usually
a letter from your doctor or a copy of
your high school individualized education plan will do the trick.
“If you set up a meeting with the
Office of Disability Services before you
start classes and talk about accommodations you might need, then
before the semester begins you get the
accommodation letter that spells out
what you’re eligible for and you take it
to your professors,” says Everett.
This is the meeting where you ask
for a note taker if you think you’ll need
one. “I used note takers in big lecture
hall situations,” says Everett. He says
there are two ways to get one. Either
the university will provide one, or
you may pick a classmate. “Then that
person gets paid through the Office of
Disability Services. So they are taking
the class as they normally would, but
get a little bit of money.” That’s a sweet
deal for a struggling student.
If you plan to live on campus, arrange to meet the school’s housing
staff at the same time you meet with
Disability Services. Not only does this
allow you to ensure your needs are met
ahead of time, but it also gives you an
opportunity to establish a rapport for
when things go awry.
Everett did everything right, met
with the appropriate people, and still
found himself in a building where he
could not access the laundry facilities.
“The washers and dryers were down
steps into the basement and that didn’t
work,” he says. But it was an easy fix,
especially since his accessibility needs
were well-documented, and he was
quickly moved to a building with an
elevator right to the laundry area.
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SEPTEMBER 2015
47
INNOVATIONS
40 Years of Ultralight Progress
By Mark E. Smith
A
fter 40 years of innovation
in the ultralight wheelchair
market, just when you think
you’ve seen it all — BAM! —
something new comes along. When the
changes are really good, we say to ourselves, “I’ve needed that for years!” And,
I’ve found some new products that might
have you saying just that.
Frog Shield: Stop the Rat’s Nest
Have you ever looked at your caster
axles — that space between the caster
and the fork — and seen the rat’s nest
of tangled, fur-like material intertwined
with your caster bearings? Carpet fiber,
pet and human hair, thread and more
has an uncanny way of winding itself
around your casters’ axles. It not only
creates an unsightly clump of yuck,
it also works its way into your bearings, first creating drag, and eventually
destroying them. For years, many of us
have struggled with tweezers or having
to disassemble our casters to remove the
nasty, knotty mess that slows us down
and degrades our bearings.
Finally, Frog Legs, legendary maker
of suspension forks and soft-roll casters,
has brought to market the aptly-named
Frog Shield — a shield for caster bearings
that is engineered to keep out the nasty
and knotty stuff. The Frog Shield replaces
the traditional caster spacer in-between
Frog Legs forks and casters. Essentially,
the Frog Shield encapsulates the bearing,
shielding it from debris. An additional
benefit is that because Frog Shields keep
your bearings clean, gunk doesn’t fling
onto your casters, keeping your casters
cleaner, as well.
Frog Shields retail for $29.99 for a set
of four and are compatible with both new
and existing Frog Legs brand forks and
casters from sizes 3 to 6 inches.
ROHO Smart Check:
Maintaining Perfect Pressure
ROHO air floatation seat cushions have
been recognized as an industry leader in
pressure management for four decades.
After all, the concept of “immersion”
that allows pressure points to sink into a
surface — while surrounding areas are
supported — is among the surest forms
of pressure management, and that’s what
a ROHO cushion accomplishes.
As life-changing as ROHO cushions
have proven for those at risk for pressure
sores, the downside has been achieving
the exact, optimal air pressure — too
48
NEW MOBILITY
much or too little and the cushion is
less effective. Over the years, a growing
market has desired some sort of pressure
gauge, and ROHO has now delivered in
an all-encompassing way. The new Smart
Check system, available on ROHO HIGHand ROHO MID-PROFILE cushions, takes
the guesswork out of setting the right
pressure, as well as maintaining it.
ROHO Smart Check is a handheld
monitor that clips on and off of a special
valve on new compatible cushions. For
setup of a cushion, Smart Check has
a red and green light. First you inflate
the cushion until the overfill light is
red. Seated on the cushion, you let air
out until the light turns green, noting
optimal air pressure. Smart Check then
remembers this setting. By checking
the hand control daily, you can ensure
you’re still in the green; however, if optimal air pressure drops, a red light alerts
you to add more air. The result is that
Smart Check allows you to properly fit
and monitor your ROHO at all times.
Smart Check adds approximately $150
to compatible ROHO cushions, but pays
for itself, so to speak, in reliable pressure
management and peace of mind.
Quickie 5R: Max Adaptability
In the world of high-performance
ultralight wheelchairs, performance
and adaptability are often at odds
with each other. You can have a highperformance ultralight that’s not very
adaptable, or an adaptable ultralight
that’s not very high-performance — but
finding both is difficult.
The new Quickie 5R strives to combine
a high-performance ultralight with maximum adaptability.
The 5R starts with a hydro-formed,
mono-tube frame that weighs
in at a scant 21.5 pounds base
weight, complete, making it a
great high-performance ultralight. From there, what sets the
5R apart is its adaptability. If
you have a higher-level SCI or
disability, you can add virtually
any option you may need.
You can go from side
guards to full armrests;
ultralight wheels to
power assist; fixed frame
to full suspension; and, sling upholstery
to rehab backrests. The list goes on
and on, but 5R is truly among the most
adaptable rigid ultralights on the market, where you don’t have to sacrifice
performance for adaptability.
Coded as a K0005 by insurers, the
Quickie 5R is readily funded and among
the best options if you need exceptional adaptability in a high-performance
ultralight.
No Innovation Too Big or Small
Indeed, after 40 years, the innovations
just keep coming. Some are big, like a
highly-adaptable ultralight. Some are profound, like an air cushion monitor to prevent pressure sores. And, some are small,
like a shield for keeping the gunk out
of your casters. All, however, improve
the quality of our lives — and that’s
what true innovation is about.
Resources
• Frog Shield, Frog Legs, 800/922-2129;
www.froglegsinc.com
• Smart Check, ROHO, 800/851-3449;
www.roho.com
• Quickie 5R, Sunrise Medical, 800/3334000; www.sunrisemedical.com
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SEPTEMBER 2015
49
PARA/MEDIC
Total Shoulder Replacement
in Wheelchair Users
By Bob Vogel
Q. I’m 62, in my 40th year as a T4 complete
para, and my active life has taken its toll on
my shoulders, especially my left one. An MRI
shows severe cartilage wear, and the ball
and socket are bone on bone, which causes
excruciating pain from something as simple
as brushing my teeth. It’s so bad I can’t sleep.
My orthopedist recommends a procedure
called a reverse total shoulder replacement.
I’ve only found two small studies on shoulder
replacement in wheelchair users, and neither
addressed functional outcome. If I have the
surgery, what is the recovery time? After
rehab, will I be able to transfer on my own?
Will I be able to push a manual chair?
— Debbie
D
ebbie, you are not alone in looking
for information in this area — of
the little information out there,
much is outdated. For answers I
turned to Dr. Edward McFarland, professor and director of shoulder and elbow
surgery at the Johns Hopkins School of
Medicine. In March 2015, Johns Hopkins
submitted a study on shoulder replacement surgery on six wheelchair users
ranging in age from 44 to 81 years, with
follow-ups from one to three years.
A standard total shoulder replacement — known as total shoulder arthroplasty — consists of cutting off the ball
located on the end of the humerus
(upper arm bone) and replacing it with
a metal ball attached to a stem that fits
into the humerus. The socket, located in
the scapula (shoulder blade) is replaced
with a plastic socket held in place with a
special cement.
McFarland explains that traditional
TSA is a challenge in wheelchair users
50
NEW MOBILITY
because they often have damage in the
rotator cuff — muscles and tendons that
surround the shoulder — and a TSA relies
on the rotator cuff to hold the ball socket
in place. Rotator cuff damage can lead to
unsupported areas that allow the TSA to
fail in two ways — it can dislocate or the
damaged rotator cuff can put uneven
stress on the plastic socket, which can
cause it to loosen.
According to McFarland, a reverse
shoulder replacement (approved by the
FDA in 2004, also called a reverse total
shoulder arthroplasty), “has been a godsend for wheelchair users because it can
address rotator cuff damage.” In a RTSA
the ball and socket structure is reversed
for greater stability. The ball is attached
to the scapula, instead of the humerus,
via screws, and an area of porous material
that bone grows and bonds with, and the
socket fits on the end of the humerus via a
metal stem (see above image).
The downside of RTSA is it requires a
longer recovery because the bone needs
to grow into the prosthesis and there is no
long-term data on how they perform. In
the Johns Hopkins study, all six wheelchair
users had RTSAs with significant decrease
in pain and no medical complications, and
all were able to do their own transfers and
push a manual chair.
Dr. Benjamin DuBois, shoulder surgery
specialist at Grossmont Orthopaedic
Medical Group in San Diego, Calif., has
done about 650 shoulder replacements
in his career, five on wheelchair users. His
outcomes are on par with McFarland’s.
Both surgeons say if the rotator cuff is in
good condition, a standard TSA works
well, but with rotator cuff damage, an
RTSA is in order.
Both surgeons agree that shoulder
replacement surgery in a wheelchair user
is a serious endeavor to be considered only
when all other options have failed. “When
a wheelchair user comes into my office,
it is because there is something terribly
wrong with their shoulder,” says DuBois.
“I tell them if they are still able to function,
it is best to wait. If the pain gets to the
point they can’t sleep at night, I discuss
the risks and the rehab process — the key
is understanding this. Then I say ‘I can fix
this as long as you understand the risks.’”
McFarland and DuBois both emphasize
the importance of finding a specialist who
performs 50 or more surgeries a year and/
or comes highly recommended. The procedure takes two or three hours.
Within a couple of days of surgery the
arm can be used for non-weight bearing
tasks like typing on a keyboard. For a standard TSA, no weight bearing is allowed
for six to eight weeks. Using a power chair
and staying at a care facility, typically a
nursing home that provides transfers to
bathing and bowel care, is recommended.
McFarland says that for an RTSA, the recovery period until transfers are allowed is
three months. You should not move your
arm behind the plane of your body — as in
putting on a jacket — for six months. Both
surgeons agree that once initial healing
has taken place, self-transfers and pushing
a manual chair can start at a pace dictated
by how long it takes to regain strength in
atrophied arm and shoulder muscles.
In both doctors’ experience, after
recovery and rehab, wheelchair users with
a shoulder replacement are able to do
their own transfers and push a manual
chair. However, both recommend using
a power chair because shoulder replacements aren’t designed for the constant
wear of pushing a manual chair — they are
mechanical, so they will eventually wear
out. This is where power assist units like
a SmartDrive or, for higher level injuries,
a Spinergy ZX-1, can be shoulder savers,
enabling a person to stay in a manual chair
and reduce wear on a shoulder replacement (see resources).
Tim Davis, 66, a Vietnam veteran,
became a double above-the-knee amputee in 1968. Although Davis has huge
shoulder muscles and healthy rotator
cuffs, 40 years of wheelchair sports wore
out his shoulder cartilage. “My right shoulder got so painful that I couldn’t lift my
hand up to wash my hair,” he says.
In 2007 Davis had a total shoulder
replacement, but after two years he still
couldn’t reach up to shave. His VA doc
sent him to Ann Arbor, Mich., where Dr.
Bruce Miller X-rayed the shoulder and said
the stem and ball was put in crooked and
didn’t match up with the socket. “Dr. Miller
re-did the shoulder, and now the arm works
great,” says Davis. Although he did transfers
within eight weeks, he says it took three and
a half years to get to 100 percent, which for
Davis means full range of motion, pushing
his manual chair and extreme strength.
Two years ago Davis had a total shoulder replacement on his left shoulder done
by Dr. Matthew Snyder at Fort Wayne
Orthopedics in Fort Wayne, Ind. “My left
shoulder has great strength, but I still
don’t have total range of motion — I can’t
reach straight above my head yet, but I
know that’s coming,” he says.
Jan Brown (pseudonym), 64, in her
43rd year as a T5 para, had shoulder
pain off and on for 20 years. It initially
responded well to physical therapy and
rest, but over the past five years the
pain became relentless. X-rays showed
both shoulders were severely arthritic
and the rotator cuffs were shredded
due to lack of joint space.
In mid-April 2015 Brown had a
reverse shoulder replacement on her
left shoulder at St. Agnes Medical Center
in Fresno, Calif., by a surgeon who has
been doing the procedure for 10 years.
“Now, three months after surgery, I’m
pleased with the results,” she says.
“The main plus of the surgery is a huge
decrease in pain.” She is home and able
to do her own transfers and push her
manual chair for short periods of time
around the house, but uses a power
chair most of the time. Now pain in her
right shoulder is causing her to consider
having it replaced later this year.
Resources
• SmartDrive, 800/637-2980;
max-mobility.com
• Spinergy ZX-1, 760/496-2121; www.spinergy.com/catalog/zx1_power_add_on.php
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SEPTEMBER 2015
51
ERVIN
Having one’s butt wiped daily is a privilege,
not a right. There’s nothing about it in the
Constitution. I must learn to do without.
By Mike Ervin
Doing My Patriotic Duty
I
n these times of economic austerity, we all have to make sacrifices.
Well, you know me. The one thing
I am first and foremost is a patriot. So
I’m ready to do my patriotic duty.
If we really care about the future
we leave for our children, people who
need public assistance, like me, will
have to change our attitudes. The
public assistance I rely on is a program
where the state pays the wages of
the crew of people I hire to come in
every day to wipe my butt, etc. But
I know I have to accept the fact that
the public treasury is not a bottomless pit. The world doesn’t revolve
around me. There are other people in
my state who are also in dire need of
public assistance, such as the owner
of the local NFL football franchise. He
needs a new stadium. The one he’s
using now is obsolete. It’s nearly five
years old. And football stadiums don’t
grow on trees, you know. This new
stadium will cost a billion bucks. And
the owner insists that the taxpayers
pay for it all or he’ll take his team and
leave town. And if that happens everybody will be pissed off at me for being
so greedy and hogging up all that
public assistance money.
I have to face facts. I must learn to
do without. My state is in a financial
mess. And the reason we’re in this
52
NEW MOBILITY
mess is because our financial priorities
have been all out of whack for many
years. Like for instance, the people
who wipe my butt were paid a hefty
$13 per hour while the owner of the
football team barely made enough to
purchase a third yacht. This is simply
not sustainable.
Fortunately, our new governor is a
successful businessman and he knows
what to do when financial priorities are out of whack. He’ll put them
back in whack. And then everyone
will look at our state and say that our
financial priorities are truly whacked.
Our new governor is a straight-talking
man of action. When he saw that the
state didn’t have enough money to
pay its bills, he cut taxes, leaving the
state with even less money to pay its
bills. I’m not sure how that works but
apparently it does. All that big business stuff is waaaaay over my head.
So I’m trying hard to change my
attitude and realize that in America,
having one’s butt wiped daily is a
privilege, not a right. There’s nothing about it in the Constitution. But I
admit I’m having a hard time making
the adjustment. I can’t help but worry
that the day is coming soon when no
one will be around to wipe my butt.
Faced with this pressing anxiety, I did
what millions of people do when the
future looks bleak and they need guidance and reassurance. I opened up
the Good Book — and in the pages of
Oprah’s magazine I was reminded that
the future is within my control if I only
have the courage to take charge. The
first step is to identify the one thing
I want to happen in my future more
than anything else. I determined that
the one thing I want to happen in my
future more than anything else is to
have my butt wiped every day. The
next step is to envision a way to make
that one thing I want to happen more
than anything else become a reality.
All I could think of is to have a public
assistance program where the state
pays people to come to my house and
wipe my butt.
That envisioning stuff didn’t go
well but that’s OK. Oprah’s magazine
says it’s important to take a break
from our troubles now and then by
practicing self-love. Pamper yourself
by buying a new dress. So I tried that.
It didn’t work. I was still a big ball
of stress. I even tried executing the
recipe for quick and easy papaya salsa
on page 468. Nothing .
Clearly there’s something wrong with
me. Maybe I don’t love myself enough.
I have to work harder at changing my
attitude. It’s my patriotic duty.
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53
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Orion Medical Group, Inc.
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Tel. 714-649-9284 / 1-888-64-ORION (67466)
Fax. 714-594-4038
[email protected]
www.medicalvibrator.com
Did Your
Address
Change
?
If so, please provide
New Mobility with
your updated
information so you
will not miss
a single issue.
Full Name, Street Address,
City, State & Zip Code are
needed for both the
old & the new address.
Please allow 6-8 weeks for
this change to be processed.
Please mail to:
120-34 Queens Boulevard, Suite 320
Kew Gardens, NY 11415
Or submit your request electronically to:
[email protected] or at
www.newmobility.com
Or call: 800-404-2898 x7203
54
NEW MOBILITY
CLASSIFIEDS
FOR SALE
FOR SALE
$15,000 2001 35’ RV (5th wheel) accessible. Roll in shower. Willing to sell F250
FREE StimMaster, Orion Home/
Clinical Ergometer, made be Electologic.
Company has gone out of business.
Photos available. The cycle is in new condition although it is close to 15 years old.
It has new stim cables but will need new
electrodes, which are easy to find. This
cycle is an excellent way for complete
paras to exercise their quads, gluts and
hamstrings. Pick-up only: Wilmington,
Delaware - 45 min from Phila For more
info: [email protected].
pull truck (has lift) for $21,000 daliwong@
Wanted --- Used Quickie II. 17” seat.
The older the better. lolitalark@yahoo.
com
Waterfront Home, Large Bathroom
with Roll-In Shower. Spectacular View,
Resort Amenities included. 561-6271941. www.placidaccess.com
RT-300 FES BIKE - $9,000 manuals&
cables- 337-292-5255 - busdown2002@
yahoo.com
USA Jeans makes pants designed for sitting. Call Darlene at 800-935-5170 or visit
www.USAJeans.net
Jump start your sex life and get
expert advice at medicalvibrator.com or
call 714-649-9284 we also specialize in
fertility and incontinence.
40’ ft. 2000 Beaver Patriot Motor
Home NEW Low Price! Immaculate –
REALLY LOADED!!! – only 84,000 miles!
LIKE NEW, ONLY $70,000. 2 slide outs,
Caterpillar Diesel, Pusher 3126B Truck
Engine, SuperArm, Roll-In Shower / HC
Bathroom, Hand Controls & Digi-Pad.
Call or e-mail for any additional info and
pictures. Cell (951) 218-4023 ~ Ask for
William. Email: [email protected]
Slightly used GO-Anywhere commode/
shower chair. $800. Includes Carrying
case. Woody 903-277-2301.
Antique Harley Davidson with hand
controls. 1965 Electra glide FLH with
matching side car. Restored several
years ago. 90% original with electric
start. 3 speed with reverse. Hand shift
on gas tank. Hand clutch and brakes.
Wheelchair fits in side car. I’m a T-8 paraplegic complete. I have been riding this
bike for 20 years. $25,000. Serious inquiries only. Phone 563-259-4428. Located
in Iowa. Please leave a message.
Permobil X850 Trax Corpus for sale.
Call for details 718-642-6420
Berkel Bike – Cycling for All – a handcycle that allows propulsion from both
arm and/or legs, allowing riders to get
maximum benefit of pedaling within
all means. The sit is high for maximum
stability and easy access. Excellent condition, used only once. Located in NYC.
Call: 917-821-5773 or e-mail: akg1948@
nyc.rr.com. Bought new for $5,400 and
selling for $4,000
United Spinal Business Member Updates
yahoo.com 973-910-1812
Allergan: On March 17, 2015, Actavis (NYSE:ACT)
completed the acquisition of Allergan, creating a
unique, global pharmaceutical company among
the leaders in Growth Pharma. www.Actavis.com
and www.Allergan.com
VACATIONS
Ocean-front condo, wheelchair
friendly, sleeps six, pool, boardwalk to
beach. Rents daily, weekly, monthly. St.
Simons Is., GA. [email protected]
Florida Keys! Accessible 2 /bedroom
Gold
419-569-6114.
Hollister Inc. responds to positive feedback to the
VaPro Plus™ hydrophilic intermittent catheter and
consolidates the product line to focus on this innovative closed system catheter. www.hollister.com/us
Permobil’s 2015 PowerTrip is bringing
you THE BEST IN MOBILITY!
http://permobilpowertrip.com/events/
On The Beach Los Cabos, Mexico
Custom accessible Villa in the Village
Wellspect HealthCare is offering FREE samples of
LoFric catheters, proven to improve short- and longterm urethral health. 855/456-3742, www.wellspect.us
of Los Barriles, Walk/Roll to restaurants,
shops, markets. Watch Whales and
Dolphins. Swim, snorkel and fish, right
out your back door. The Villa is completely wheelchair accessible boasting
a huge roll-in shower & roll-under sinks.
Monthly, weekly, or short term vacation
rental. U-Tube Virtual tour! https://youtu.
be/yN5chLwlJvI Voted “Best Accessible
Vacation EVER” (by those who stay here).
Visit www.vrbo.com/434500... read the
Bronze
Enhance your clothing choices! suitsonwheels.biz
Numotion: Join Numotion in celebrating the 25th
anniversary of the Americans With Disabilities
Act! www.numotion.com/news-resources/blog/
reviews! NEW! For larger groups or weddings www.vrbo.com/669234.... 7,000 sq
ft! 2 roll-in showers, all accessible! 1-866727-7986 (toll-free)
Accessible Journeys
making the world more
accessible since 1985
Holland’s Spring Tulips
Rhine River Cruises
Barcelona & Madrid
Venice & Ljubljana
Accessible Italy by train
Vietnam-Thailand-Cambodia
Kenya-Tanzania-Zambia-South Africa
800.846.4537
www.accessiblejourneys.com
Supporters
Coloplast
The Comfort Company
DiMarco Araujo Montevideo Attorneys at Law
KD Smart Chair
Michigan Auto Law
Mobility Funding Group
Scootaround
Sleepsafe Beds
Surehands Lift & Care Systems
Synapse Biomedical
ADDRESS CHANGE
Change your address? If so, please provide New Mobility with your updated
information. Full Name, Street Address,
City, State & Zip Code are needed for
both the old & the new address. Please
allow 6-8 weeks for this change to be
processed. Please submit your request
electronically to: mkurtz@unitedspinal.
org or at www.newmobility.com Or call:
For more information on how you too can support United
Spinal and become a business member, please contact
Megan Lee at [email protected] or 718/803-3782,
ext. 7253.
Acknowledgements on our website, in New Mobility, in
United Spinal e-news or any other United Spinal publication
should not be considered as endorsements of any product
or service. It is the individual’s responsibility to make his
or her own evaluation of such. To see a complete listing of
United Spinal business members, visit www.spinalcord.org/
resource-center/nscia-business-members.
800-404-2898 x7203
SEPTEMBER 2015
55
CRIP BUZZ
THE BEST OF DISABILITY BLOGS AND BANTER
GOOGLE CELEBRATES ADA
Photo courtesy of The National Portrait Gallery
Web giant Google celebrated the 25th anniversary of the Americans with Disabilities Act on its home page, in video and
by painting portraits of movement icons on staircases throughout Washington, D.C. That last one raised some eyebrows
since steps aren’t exactly a symbol of universal access. Google explained it was in homage to the iconic “Capitol Crawl,”
the last-minute push of ADAPT on the eve of the law’s passage when activists abandoned their wheelchairs and pulled
themselves up the Capitol steps. Well done, Google, and thank you: google.org/impactchallenge/disabilities/ada.html.
Clockwise from left:
Justin Dart, Judith
Heumann, Tom
Harkin, President
George H.W. Bush
Photos courtesy of Google
56
NEW MOBILITY
Smart Check by ROHO Means
Independence and Peace of Mind
™
®
We listened to what you wanted in the next generation of ROHO cushions, and developed Smart Check for
maximum skin and soft tissue protection!
With Smart Check, clinicians set and save their recommended inflation setting for your needs. Then, with the
simple push of a button, you can check your inflation - whenever, where ever and as often as they like.
CONFIDENCE, INDEPENDENCE & PEACE OF MIND:
Smart Check monitors your ROHO cushion with the push
of a button, so you can be confident and stay within your
clinicians' recommendation.
Smart Check takes the guesswork out of using your ROHO
cushion, and there's no limit to how often you can check,
so you can always feel secure.
89% of field study participants said they were more
confident they were using their ROHO cushion properly
with Smart Check.
Be confident and in control with Smart Check. Call today to find a ROHO provider near you!
800-851-3449 | roho.com/smartcheck
We Are You.
Jim Black
TiLite Director of Western
Sales Operations
WE USE THE CHAIRS WE BUILD.
Listen to Jim and the TiLite team
talk about why TiLite’s TiFit wheeled
prosthetics are so critical.
HEAR OUR STORIES.
TiLite.com/TiFitStories