Natalie Weaver has many roles: a woman, a mother, a wife, a voice for change, an activist. But it’s her role as a mother that inspires everything else that she does, because as most of you know, there’s nothing more loyal, or fierce, as the love a mother has for her child. Natalie, who has three kids, faced an unspeakable act when her oldest daughter’s face was used in the most horrific way possible. Even though she was furious, she decided to more than just get mad, she decided to get even.
Natalie and her husband Mark have a nine-year-old daughter, Sophia. Sophia was born with several mental and physical complications, including deformities to her face, hands, and feet. When Sophia turned one, she was diagnosed with a rare, severe neurological disorder, that mostly affects girls, called Rett syndrome. It was once thought to be a part of the Autism Spectrum Disorder, but not doctors know that it’s mostly genetically based. So what are the symptoms of Rett syndrome?
First off, the brain doesn’t properly grow, and the head is typically smaller. Stunted growth shows itself as the child grows older. Most kids that have Rett syndrome lose the use of their hands and don’t have any language skills. Because they have problems with muscle coordination, they have a difficult time walking. They may also have seizures and uncoordinated breathing, including forceful exhaling of air or saliva, very fast breathing, and swallowing air.
What are the causes of Rett syndrome? WebMD says that most children with Rett syndrome have a mutation of their X chromosome. It’s not clear what the gene actually does, or how the mutation leads to Rett syndrome, but it’s believed that the single gene influences many other genes that are involved in development. Even though Rett syndrome is genetic, kids almost never get the gene from their parents. It seems to be a chance mutation of their DNA.
Unfortunately, there isn’t a cure for Rett syndrome, but doctors believe that medication treatment and therapy can ease some of the symptoms, which leads us to the beautiful Sophia. Sophia needs the help of her family 24/7, and even though she’s in pain some of the time, Sophia is still a happy, strong child. But it’s not always easy.
“She’s had 22 surgeries. She has a feeding tube. A colostomy bag. She has seizures and choking spells because of both the deformities and the Rett syndrome,” said Natalie in an interview with CNN. Natalie said that Sophia is the strongest person she knows, but when it comes to dealing with people, they all have to be strong. When Sophia was just a baby, Natalie says that she hid in darkness for seven years because the “hate and stares” from others were so painful.
About a year ago, Natalie chose to stand up against the misconceptions, bullying, and the general hateful attitudes towards Sophia, but also all innocent children. Natalie, as a healthcare activist, began speaking out about Sophia’s condition. It wasn’t long before trolls were targeting the little girl. “People, they seek you out and want to hurt you. There are people who go out of their way to make sure you see their cruelty. I get people telling me to kill my child, to put her out of her misery,” said Natalie.
It didn’t take long after Natalie spoke out that she received an extremely horrific tweet: A photo of Sophia, alongside a paragraph urging coerced pregnancy termination, and essentially, the support of eugenics. A message attached to the tweet read: “Yea it is okay to think that every thing matters however a lot of them do not hence the amnio test.” The “amnio test” refers the amniotic testing that can be done on a pregnant mother that can alert the parents of fetal abnormalities. But this wasn’t all that Natalie received.
The post continued to say that any parent that doesn’t choose to terminate a fetus that has abnormalities should be required to pay for “all bills accrued after that.” And it was quite clear that they wanted Natalie to find out what they had written. Not only did they use Sophia’s picture, but they also tagged Natalie on Twitter and sent her a personal message. Can you even imagine being that hateful of a person?
Natalie was furious and reported the tweet and asked her followers to do the same. “I blocked it. I just hoped it was gone. But it was never removed. The account remained,” said Natalie. Natalie was told by some of her followers that they had reported the tweet, as well, and received messages from Twitter that said the tweet was proved to “in violation of Twitter rules.” But Natalie received a message from Twitter that said that the post didn’t violate their policies. She refused to give up.
Natalie hoped that it would all just go away and the account would be disabled, or at the very least, the tweet would be taken down. A few months down the road, Natalie received another message from her followers that said the tweet was still there. “[The troll] was mentioning my name and reaching out to my followers on Twitter,” said Natalie. The post, and her reaction, just brought out more disgusting messages.
One tweet said, “She will live a miserable life and be a burden on the family and society. Civilization does not run on feels.” Another read, “#ISHUDNTHAVETOPAYFOIT.” As soon as it became public, people began using it for a debate about pregnancy termination rights. But what truly mattered to Natalie was the original post because Sophia’s picture was being used. We’re sure you can all agree that you wouldn’t want your child’s face to be used in such a hateful manner.
Once again, Natalie asked followers to report the tweet and she estimates that thousands of people did. In order to get more public attention, Natalie told her story to a local news station. She just wanted to pressure Twitter enough to take down the post. Natalie had spent Sophia’s entire life trying to fight for a some sort of normalcy and respect, and there was no way that she was going down without a fight. The tweet was definitely getting removed.
About a week and a half later, after nonstop coverage, Natalie received another message from Twitter. “They said they made a mistake. Twitter had it in their policy to protect people with disabilities against hate.” Natalie says they told her that the reporting tool they used for reviewing tweets didn’t have enough space to add the disability category. Even though she was happy the tweet was removed and the account was suspended, Natalie knew the policy needed to be changed – and Twitter thought so, too.
Natalie received another response about their “hateful conduct policy.” “Hateful imagery will now be considered sensitive media under our media policy. We consider hateful imagery to be logos, symbols, or images whose purpose is to promote hostility and malice against others based on their race, religion, disability, sexual orientation, or ethnicity/national origin.” It may be a small step, but for Natalie, it’s an important one. “We have to deal with so many challenges, but because of her my life is better. I know what true happiness is,” explained Natalie.