Charlotte Woodward is a busy woman.
She is in her third year as Community
Outreach Advocate for the National Down
Syndrome Society (NDSS) while working
toward a degree in sociology at George
Mason University in Fairfax, Va.
“I would say my advocacy work with
NDSS and other disability organizations
would be my favorite and most important
activity, but family ties and friendship ties
are also important to me,” Woodward
told Mobility Management. “My number
one personal goal is to develop a fitness
routine, and post pandemic I want to get
back to traveling — safely, of course —
and to play sports competitively. Maybe
basketball and baseball?”
But Woodward can add another
achievement to her résumé: media star.
TikTok Video Goes Viral
An August 2020 video posted by the
NDSS to TikTok went viral last summer, and
through mid January it had tallied more
than 1.1 million likes. In the video, called,
“Things About Having Down Syndrome
that Don’t Make Sense,” Woodward
explained she’d lose her health insurance
if she got married, and noted that people
with Down syndrome who are employed
can be paid less than minimum wage.
“I can be denied an organ transplant
just because someone thinks less of me,”
Woodward added on TikTok.
Indeed, that topic — Woodward, now 30,
had a heart transplant in her early 20s —
was the subject of a January story in Forbes
and a September 2020 story on Today.
The Forbes piece pointed out that
people with Down syndrome have traditionally
been denied lifesaving organ
transplants: They’re defined as ineligible
because of developmental or intellectual
disabilities. Even now, in more than half
of American states it’s legal for decision
makers to cite an intellectual or developmental
disability when explaining why a
patient doesn’t qualify for organ transplant.
A Bill Named After Charlotte
In December, Rep. Jaime Herrera Beutler
(R-Wash.) and Rep. Katie Porter (D-Calif.)
introduced the Charlotte Woodward
Organ Transplant Discrimination
Prevention Act, which would prevent
a person’s disability from being the
sole reason to deny a person an organ
In the bill’s announcement, Porter
said, “Too often, discrimination stops
Americans with disabilities from getting
the lifesaving organ transplants they need.
I’m proud to partner with Congresswoman
Herrera Beutler on critical legislation that
bars healthcare providers from denying
necessary transplants solely because an
individual has a disability. These protections
for Americans with disabilities and
their families will save lives.”
Since the bill did not pass during the
last session of Congress, it will need to be
reintroduced this year.
The NDSS has already said it will be
mobilizing to build support for the new bill.
And post-pandemic, when face-to-face
meetings can be put back onto calendars,
Woodward said she plans to resume her
regular visits with legislators and policy
makers. “Yes,” she said, “I sure hope so.”