A few weeks ago, Natalie Weaver shared a picture on Twitter of her daughter, Sophia, looking at their Christmas tree. Then the harassment began: A woman told Weaver to put Sophia out of her misery. After successfully lobbying Twitter to include disability harassment in its reporting tool earlier this year, Weaver had hoped the taunting might diminish. But she realized her work had just begun.
“Unfortunately, the Twitter change was only a start,” Weaver told TODAY. “I can’t post a proud holiday photo without receiving hate and being told to kill my child.”
While Weaver reported the woman, she also began urging Twitter to hire disability activists. Weaver believes if the company asks disability activists to train staff, employees will better recognize subtle forms of disability discrimination and respond to it more appropriately. A lot of people doubt that harassment against disabled people exists and that makes it challenging to overcome.
“So many people cannot believe disabled people receive so much hate. I am shocked by that,” she said. “Profoundly disabled children are not accepted in society … I can’t go to the grocery store without looks of disgust.”
That’s one reason why Weaver has become an advocate for disability discrimination and harassment. Sophia, 10, has Rett syndrome, Type 1 diabetes and severe facial deformities. Weaver started speaking up after posting a picture of Sophia that a eugenics group stole to use as justification for the cruel practice.
“I am fighting for the most basic human right to this day, to be able to have my child be seen as a human being,” she said. “You don’t see profoundly disabled kids and kids with facial deformities and that is why I am sharing my family.”
While Weaver wants to normalize disabilities and facial deformities, she also wants people to know that Sophia is more than the conditions she has. This Christmas, Sophia received Nancy Drew books because mysteries and scary stories intrigue her. And recently, Sophia had a first that made her mom smile (even though it would make other parents balk). She called Weaver annoying.
“I know I am annoying. I am always messing with her and fixing something,” Weaver said with a laugh. “I loved it. She said it several times too. She has never said this in her 10 years and this might be the only time she says it.”
Weaver also started a foundation, Sophia’s Voice, where she provides money to help families with severely disabled children purchase much-needed medical equipment.
“This is what I can do to balance out the hate,” she said. “I have been able to help over a dozen people providing medical equipment, financial assistance.”
And, parents of children with disabilities often thank Weaver for speaking up and sharing Sophia with the world. Seeing Sophia helps them feel less alone.
“People told me that they have hidden away because they have facial deformities and they have had the courage to step out because of Sophia and that meant a lot to me,” Weaver said. “I just want to make the world better for Sophia and others like her.”