The family first found out that Sophia had Rett syndrome when she was just a year old, and this neurological disorder has greatly impacted her brain development. “It’s caused her to lose the ability to walk, talk, and do things for herself — the skills that did develop began to disappear at age 2,” Weaver says. “It causes seizures, breathing issues, tremors, and increases the risk for sudden death.”
However, she found out that North Carolina was trying to change coverage and “reduce services for medically fragile children,” so Weaver decided to fight back to protect health care on the local and federal levels. “I felt I had no choice but to speak out because my daughter’s health care and life was being threatened,” she says.
As Weaver advocated through press conferences, interviews, and social media, not everyone focused on her message that health-care changes can have a serious impact on people with chronic illness or disabilities.
Understandably, this tweet set Mom on a mission. “The eugenics ad was different because this person was using my child’s image to promote eugenics. He was stating she was defective and undeserving of life,” she says.
According to Weaver, the man made a point to reach out to her on numerous occasions and started contacting her friends after she blocked him on Twitter. “It was more aggressive than I had ever experienced. It took me months to face it and when I did, I went full force against it,” she says. “It was the [buildup] of all the hate I had received and the fact that Twitter was allowing it.”
Weaver and her followers continued to press Twitter and she was given a different answer after a week. “[They said] they made a mistake. Twitter had it in their policy to protect people with disabilities against hate,” she told CNN.
Weaver also didn’t stop because she knew that so many others in the disability community have experienced the same pain from online trolls. “They are constantly harassed, discriminated against, and receiving cruel remarks because of their disabilities and I won’t stand for it anymore,” she says. “I was happy when they finally suspended the account but it wasn’t enough. I didn’t stop until Twitter took further measures to include disability in their violation reporting tool to protect the disability community from hate on their platform.”
