Leading by Example
STEVEN FIALKOFF IS A MAN OF MANY EXPERIENCES AND MANY TALENTS. He’s outgoing and gregarious. He’s a proud New
Yorker; he’s an inventor. He has also won two Emmys as a
film and video editor and has written a play. And, he has
limited vision due to retinitis pigmentosa.
Fialkoff was first diagnosed in his mid-20s and began
losing significant amounts of his vision in his 50s. His
30-year professional career as a film
and video editor included positions
at CBS, “The Rosie O’Donnell
Show,” and Al Roker Productions.
Now, at age 63 and with about 97
percent of his vision gone, Fialkoff
works to overcome the fear that
often comes with blindness and to
be an example for others.
“I want to lead by example,”
Fialkoff says. “I’m not in denial
about my blindness, but I’m not
going to let it define me.”
Fialkoff likes to use his creativity to solve problems.
He invented and patented the design of a bra that helps
make expressing breast milk easier. He delights in using
inexpensive, off-the-shelf devices to help him see in
dark restaurants. For example, he uses a tiny, low-light
infrared wireless camera originally sold as a nighttime
baby monitor to help him. The camera sends a live video
image to his i-device or smartphone allowing him to see
his family's faces around the table.
“This horrible thing,” Fialkoff says about blindness,
“forces me to be more creative. I always wonder what I
can do to fix situations people find themselves in, to make
it better. If I weren’t going blind and had a regular job, I
probably wouldn’t have the time to look for ways to help
people, to create things, and to look for the joy in life.”
One project that required all of Fialkoff’s creativity
was a musical about the Holocaust called “The Tiny
Mustache.” Set in Terezin, Czechoslovakia, in 1944, the
musical follows the experiences of five teenagers trapped
in a diabolical Nazi deception. The musical has had three
showings in New York City during the past three years. It
was inspired by Dr. Margrit Rustow,
a survivor of the Terezin ghetto, who
was distressed by the proliferation
of Holocaust deniers. Fialkoff
worked with Eliot Bailen to create a
show about the ghetto in a way that
would engage a modern audience.
From this collaboration, “The Tiny
Mustache” came into being.
Fialkoff is also an active
Foundation Fighting Blindness
“One thing I love doing is raising
funds for the Foundation Fighting Blindness in creative
ways,” Fialkoff shared. Fialkoff posts old photos of his
friends and acquaintances from his school days on
Facebook and requests donations as they come to see the
photo albums. He has also created a video called “My RP
Retinitis Pigmentosa v2.” The video is posted on You Tube
and explains what RP looks like from the patient’s point of
view. At the close of the video, he urges people to donate
to the Foundation.
In four years his video has been viewed 42,000 times!
Fialkoff estimates his outreach on social media has raised
well over $100,000 in support of FFB.
Thank you, Steve!
Steven Fialkoff, Author of "The Tiny Mustache"
I want to lead by
says. “I’m not in
denial about my
blindness, but I’m
not going to let it
define me. ”