Charlotte Woodward: Advocate, Student, Media Star

Charlotte WoodwardCharlotte 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 transplant.

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.”

This article originally appeared in the Jan/Feb 2021 issue of Mobility Management.

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