People with disabilities face challenges every day and encounter limitations in situations that many people take for granted. While the path to social inclusion has been improving, discrimination continues for people with physical challenges, such as those living with Down Syndrome.
Advocates have been working for years to raise awareness and reduce limitations faced by people living with Down Syndrome, and a powerful new medium has become an ally for raising consciousness about the condition – TikTok!
TikTok is a popular social network sharing site where one can upload 15–60 seconds of song, dance, and comedy bits. Charlotte Woodward, who has Down Syndrome and is a community outreach associate at the National Down Syndrome Society (NDSS), and others are now using the popular social media tool to reach out and educate others about living with Down Syndrome.
In the TikTok video, Woodward, who is 30 and a student at George Mason University, in Fairfax, Virginia, discusses “things about having Down syndrome that don’t make sense.” When she was born, her parents constantly encouraged her to go for her dreams, despite the barriers that society kept in place for people with Down Syndrome. She has since become a forceful advocate for herself and others with similar conditions, leading to her now viral video on TikTok.
Woodward stressed, “These issues affect our very lives.” She states that people with Down syndrome can’t get married or they’ll lose their health insurance and support. They are paid sub-minimum wage. People with Down Syndrome do not qualify for organ transplants and are often misunderstood by police. Woodward and her colleagues at NDSS, along with other like-minded organizations, are working to change these outdated rules.
Woodward has faced discrimination all her life. She said, “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 As and I have a great job. If my parents just went along with the dire prediction of the doctors … I would never have such great opportunities.”
Ashley Helsing, director of government relations at NDSS, reiterated the inequities faced by people living with Down Syndrome, saying, “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.” She added, “It’s never been Down syndrome that has held somebody back. Rather, it’s these old antiquated laws.”
Eight years ago, Woodward faced another major challenge. The Centers for Disease Control and Prevention states that about 50% of people with Down syndrome have a congenital heart defect. Woodward had already gone through four open-heart surgeries, but they were not enough. She needed a heart transplant.
“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,” Woodward 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.”
Fortunately, Woodward’s doctors felt that her condition was not a reason to disqualify her from having a heart transplant, and she received one. Others with Down Syndrome, however, are not so lucky, due to the myth that people with disabilities cannot handle the aftercare that comes with such surgeries.
The National Council on Disability reported to Congress in September 2019 that the “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.” Helsing said, “There have actually been studies done that show that people with disabilities actually do better after getting a transplant than people without. Again, it goes back to those preconceived notions and misconceptions that are rampant in society.”
In 2012, Woodward had a heart transplant and recalled, “The transplant team looked beyond my diagnosis. Since then my heart has been great.” She then testified before the Virginia legislature and helped pass a bill to end organ transplant discrimination for people with disabilities. She is now working to get the same bill passed in all 50 states.
Sub-minimum wages paid to workers with Down Syndrome is another issue. According to the Department of Labor, it is currently legal to pay people less than minimum wage if their “productive capacity is impaired by a physical or mental disability.”
Marriage also presents obstacles for people with Down Syndrome. Some laws indicate that when people with Down Syndrome get married, they may be disqualified from health insurance and other firms of support. Woodward said, “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.”
Misunderstandings with police are also common. Woodward shared the story of Ethan Saylor, a young man with Down syndrome, who died in 2013 after being dragged out of a movie theater by a law enforcement officer. NDSS works with police departments to train officers on how to interact and understand people with Down Syndrome.
With more than 2 million views, Woodward and Helsing hope that the TikTok video helps educate people about those living with Down syndrome. Helsing said, “If you know somebody with Down syndrome your whole perspective changes. In all aspects of life, people with Down syndrome and other disabilities should be fully included and welcomed and embraced.”
Woodward added, “People with Down syndrome rise to high expectations not low expectations.” The video raises other important matters regarding equality for people with Down Syndrome and their right to complete and fulfilling lives.
Learn more about people with Down Syndrome in her video below.