When Charlotte Woodward was born, doctors told her parents not to expect much from her because she has Down syndrome. But her parents ignored that advice and encouraged their daughter to follow her dreams. Still, society sometimes creates barriers for Woodward and other people with Down syndrome. In August, Woodward made a TikTok video detailing the nonsensical challenges she faces. To date, it has been viewed over 1 million times.
“These issues affect our very lives,” Woodward, 30, a student at George Mason University, in Fairfax, Virginia, and community outreach associate at the National Down Syndrome Society (NDSS), told TODAY.
In the video, Woodward tackles “things about having Down syndrome that don’t make sense.” She discusses how people with Down syndrome can’t get married or they’ll lose their health insurance and support, how they are paid sub-minimum wage, how they do not qualify for organ transplants and how they are misunderstood by police.
Woodward and her colleagues at NDSS are working to change what seem like arbitrary rules.
“It’s never been Down syndrome that has held somebody back. Rather, it’s these old antiquated laws,” Ashley Helsing, director of government relations at NDSS, told TODAY. “There weren’t high expectations for Charlotte when she was born but she and her family were just fighting every single day to make sure that she can live the life that she wants to live. It's an incredible story and she's just such an incredible person because of all of that.”
From the beginning, Woodward’s family had to overcome barriers.
“Within minutes of being born my mom was told that I would never learn to read or write and I would be placed in a sheltered workshop. I am at college with straight A’s and I have a great job,” Woodward said. “If my parents just went along with the dire prediction of the doctors … I would never have such great opportunities.”
Woodward also knows firsthand what it’s like to need an organ transplant and possibly be denied one. According to the Centers for Disease Control and Prevention, about 50% of people with Down syndrome have a congenital heart defect and Woodward was one of them. She underwent four open-heart surgeries to repair it. But surgery wasn’t enough.
“I started to exhibit the telltale signs that my heart wasn’t keeping up with the rest of my body. So my doctors decided I would be a prime candidate for a heart transplant,” she explained. “But there is a catch. Not many people with Down syndrome have the opportunity to get lifesaving organ transplants and that is because of discrimination.”
The reason? There’s a myth that people with disabilities are not able to handle the aftercare following such a surgery. In September 2019, the National Council on Disability submitted a report to Congress focusing on how "the historical and continued devaluation of the lives of people with disabilities by the medical community, legislators, researchers, and even health economists, perpetuates unequal access to medical care, including life-saving care."
“There have actually been studies done that show that people with disabilities actually do better after getting a transplant than people without,” Helsing said. “Again, it goes back to those preconceived notions and misconceptions that are rampant in society.”
Woodward said this really hurts people with disabilities.
“It boils down to a bias in the whole health care system and sends a message to people with Down syndrome about whether they have worth and value and whose lives matter the most,” she said.
In 2012, Woodward underwent a heart transplant and has been thriving since.
“The transplant team looked beyond my diagnosis. Since then my heart has been great,” she said.
She testified before the Virginia legislature to end organ transplant discrimination for people with disabilities and the bill passed.
“I helped get that passed in Virginia and, of course, we’re trying to get that passed in all 50 states,” she said.
In the video, Woodward talks about Ethan Saylor, a young man with Down syndrome who died after being dragged out of a movie theater by a law enforcement officer in 2013, his mom explained to TODAY in July. NDSS works with police departments to help train them to interact with people with Down syndrome to prevent further devastating events from occurring.
“It’s just such a tragic thing,” Helsing said. “We do police training to help officers and people in police academies understand how to better work with our community.”
Woodward and Helsing hope that the video encourages people to challenge the stereotypes they have about people with Down syndrome.
“If you know somebody with Down syndrome your whole perspective changes,” Helsing said. “In all aspects of life, people with Down syndrome and other disabilities should be fully included and welcomed and embraced.”
“People with Down syndrome rise to high expectations not low expectations," she said.