Here's hoping the New York Times will publish Sam's letter!
To the Editor:
I love hearing about great design stores in
my neighborhood. Your article (“Where Design Heads Double-Dip”, November 22,
2007) inspired me to head out in my wheelchair to check out the new stores Muji
and CB2. When I arrived there, steps at the entrance to each store made them
totally inaccessible for someone like me. Clearly, they do not understand the
principles of universal design or the Americans for Disabilities Act. I hope
that when the NY Times reviews stores, it remembers to address the question of
access. Perhaps a reporter would like to understand what it’s like to shop from
Sincerely, Samantha Myers 3 Washington Square Village
(Apt. 14M) New York, NY 10012 Day phone: 917 991-3544 Evening Phone:
212 979-6721 The writer is 18 years old, lives in Greenwich Village, and has
the rare genetic condition, Familial Dysautonomia
Read all about Sam at Limmud last weekend in NYC. She's a star!
"Samantha Myers is a high schooler in NYC. She has advocated for kids
with FD since she appeared on Nick News to talk about her disease at
age 10. She has been on CNN, spoken publicly for the Make A Wish
Foundation, and spoke at the Girl Power conference for the Lower East
Side Girls' Club. She has raised over $15,000 for research and care for
those with FD."
Sam is the star of the work-in-progress "Sam's Club," "an inter-generational video-diary about life, love and FD starring Samantha Myers as her beautiful self, which was presented on Sunday, and programmed by Judith Helfand. "Seventeen-year-old "Sam" was born with a great sense of humor, a bad
case of the Jewish genetic disease Familial Dysautonomia (FD) and
radical notions about using T.V. for social change. She and her mom
will present a range of material from a NICK NEWS Special with Sam as
"Star FD Advocate" to her current passion for making and starring in
original "twins" movies."
She also participated in a panel about who is included and who is not: "From the Bar Mitzvah of a boy with Down Syndrome to a 40+ Chassidic man
who hides his cystic-fibrosis from his community; nose jobs and
“perfect thighs” to “Bubby never mentioned I was half black” to
17-year-old “Sam” born with a bad case of the Jewish genetic disease
FD, a great sense of humor & radical notions about social-change
t.v. Buckle UP!"
That's not all! Sam was also part of a session entitled "Today I am a Bar/Bat Mitzvah With or Without a Ramp!" "For the last 20 years, rare and creative synaogogues, families and
rabbis have been creating B'nei Mitzvah ceremonies for young adults
with special needs. Every case requires determination and flexibility.
Using original Divrei Torah, one read by a Bat Mitzvah girl herself
(now 17), we will explore the meaning, rewards and ripple effect of
We are soooo proud of Sam! Congratulations to our very own star.