Blocked and Reported

Listen Now

Join TTFA Premium.

Subscribe now to listen ad-free along with other exclusive member benefits.

When Natalie Weaver stepped into the media spotlight to advocate for her 8-year-old daughter Sophia’s right to health care, she expected some pushback. She didn’t expect the flood of online hate and death threats that came her way … or for images of Sophia to end up on the wrong, hurtful, abusive side of the Internet.

Learn more about Natalie’s work for families with medically fragile kids at Sophias-Voice.com.

About Terrible, Thanks for Asking

Terrible, Thanks for Asking is more than just a podcast (but yeah, it’s a podcast).

It’s a show that makes space for how it really feels to go through the hard things in life, and a community of people who get it.

TTFA on social: TTFA on Instagram | TTFA on Facebook

Learn more about your ad choices. Visit megaphone.fm/adchoices

Transcripts may not appear in their final version and are subject to change.


You know when you’re on a website, and you scroll all the way to the bottom, and the content just gets … weird?
I was recently on the website of a local TV news station. I scrolled past the legitimate stories about local politics, the effects of the never-ending drought here in the Southwest, right down to the bottom. There’s a … BIG AIR QUOTES HERE, story, with a headline that reads, “T-shirt fails you can’t unsee.” The photo under this headline is of an attractive woman in a baseball stadium, I guess? And it’s cropped from the neck up so you can’t see her t-shirt. OBVIOUSLY they want me to click, so I can see her shirt, so I can see that fail that I can’t unsee. And of course I do. And the, again, huge air quotes, STORY, has nothing to do with the image of the woman OR EVEN T-SHIRTS!
It’s just clickbait!
And this happens on Facebook and Instagram, too. There will be a fuzzy, lo-res photo of a person from a page like, INSPIRINGTHINGSDAILY, and it will be almost meme-style, a bunch of writing about how the person in this photo went through something, and it didn’t get them down, and one like equals one hug, and the post has like 10,000 likes — sorry, hugs — and you’re like, “This story is not real.” It’s not real. BUT … that photo is real. That woman in the baseball stadium is real. And I for one have no idea where that picture came from. Who is she? And what would it feel like to be scrolling the internet and see your own photo being used as an example of a t-shirt fail? Or as some kind of weird inspiration porn for a bunch of strangers? This happens, and it’s something that is often legal, depending on where the original photo was uploaded, but it still feels icky to me. Or, depending on who you are…interesting or inspiring? But to me it feels icky. Now, imagine that you’re scrolling the internet … and you see a photo of your child used like this. Instead of a t-shirt fail, it’s a photo of your daughter. If you don’t have a daughter, just imagine that you do. Or imagine a kid in your life that you love and imagine that a photo you took of them, a moment you HAD to capture because it was just so beautiful … is on a website that you didn’t know it would be on. And the headline — again, using that term very loosely — is something like this:
Natalie Weaver: Cops found this girl 12 years after her mom made her have plastic surgery. That’s Natalie Weaver, and the title she’s reading is from a video that is using an image of her daughter Sophia’s face to illustrate the plastic surgery the headline alludes to. A plastic surgery that Sophia never got. And there’s a reason that they used Sophia’s image.
Natalie Weaver: So Sophia was born with facial differences, and her mouth wouldn’t close all the way, and she didn’t have fully formed lips. She had a really tiny button chin and really tiny ears that I thought were the cutest things ever. And she was born without the skin underneath her eyes. So it was just redness and it was very obvious that she looked different. And so the first time I saw Sophia’s photo used was when someone stole her image and used it to promote eugenics on Twitter. I have seen people use it in their profiles as jokes. I’ve seen them use it as clickbait or as a way to make fun of her. Sophia was Natalie’s first child, and when Natalie went in for her 34-week ultrasound, the doctor saw the images and immediately sent Natalie to see a specialist at a different hospital to get a more detailed ultrasound.
Natalie Weaver: You could see the looks on their face. They didn’t know what they were seeing. They didn’t know what to say. And eventually they said, “Your daughter might not survive birth. She has deformities to her face, hands, and feet. And we’ve never seen anyone like her.” They threw out a few craniofacial syndrome names of things, which I had never heard of. It felt like I was just falling into a vortex, and the weight was so heavy. And I remember my husband and I just drove home and didn’t say a word. We were both in complete shock.
After a normal, unsurprising pregnancy, Natalie had just four weeks to prepare for a new reality before Sophia was due. A reality in which Sophia may not survive birth – and if she did would live with significant disabilities.
Natalie Weaver: I never imagined that my child might not be able to breathe on her own or might be in pain and have differences. It wasn’t even in my mind. It was very, very difficult waking up with a weight on your shoulders of not knowing what was going to happen. I didn’t think I was strong enough to handle anything of what was to come.
Whether or not Natalie felt like she was strong enough, Sophia was born on October 20th, 2008 in a room full of specialists. The birth was easy — as far as births go — and then …
Natalie Weaver: They immediately took her to the room, to the other side of the room, and I didn’t get to see her. And I kept repeating, “Is she okay? Is she okay?” I’m pretty sure I said it about a half a dozen times and no one would answer. And I would just kind of scan the room for people’s eyes, like, what? What can I learn from how they’re looking? And I remember they finally laid her on my chest. And I was, I was in shock. She had more differences that they could see in an ultrasound and prepare me for. And I just remember it felt like someone else, though it was me, saying, “You need to comfort her.” And I reached out to touch her, and then they immediately took her away. I remember recovering in the room and they were like, “Okay, she’s done with all of her testing,” hours later, “Do you want to go see her?” And I put it off. I was afraid to face a new reality, one that I didn’t know. And I think my shock had made me not remember what she looked like. So in my head I was fantasizing that everything was okay. They were wrong. But finally that night I went to see her, and that changed everything. All the four weeks of pain and fear and stress melted away when the nurse picked her up and was baby talking her. And it was like this moment of, “Oh my gosh, she’s a baby. She’s my baby.” And so she put her in my arms. I broke down crying. The nurse held both of us. And from that moment, something took over. And I knew that I was going to fight for her no matter what and make sure she had everything she needed, number one being love.
Sophia spent a month in the NICU. Her first surgery was when she was nine days old, to insert a feeding tube. Natalie and her husband had to learn how to use this tube because it was the main way they fed Sophia. They also had to take on other medical procedures at home. But in those first two years, Sophia was hitting developmental milestones. She held her head up, she played with toys, she talked and babbled! She did everything a toddler was supposed to do, she just didn’t look like the other toddlers. And the two of them felt hopeful for their little girl.
Natalie Weaver: We thought we would just have the differences to contend with and work with and get her support for that. And at around two and a half years old, she began to regress.
Sophia was diagnosed with Rett Syndrome. Rett is an extremely rare genetic mutation that affects brain development, primarily in girls. It can cause seizures, loss of speech, loss of motor function.
Natalie Weaver: Sophia definitely had a more severe form. She actually had a mutation on her gene that was never documented before. Of course, that’s Sophia’s style, because she doesn’t do anything like anyone else.
Most kids don’t have to do daily therapies, be tube fed or take multiple medications a day, but Natalie made sure that even if Sophia had her own style … she got to have as many typical childhood experiences as possible.
Natalie Weaver: I remember her first pumpkin patch visit and taking her there, and my husband and I are taking pictures and she’s got her cute pumpkin sweater on and the lady checking the kids out was really animated with them and excited and giving them stickers and making it a really fun thing for them. And the moment we walked up to buy the pumpkin, she would not even look us in our eyes. She would not look up from the register. I remember thinking, “Wow,” you know, “She’s a child, too. This is her first experience.” So my husband did grab the sticker and said, “Sophia, we’re giving you a sticker.”
And maybe that sounds like a small thing, not getting a sticker. But if you’ve ever loved a kid, you know it doesn’t feel like a small thing. Even if the kid doesn’t register it, witnessing how the world can and will hurt them someday is so brutal.
So yeah, Natalie’s husband grabs that sticker. Their daughter. Is getting. A fricking sticker.
And Natalie and her husband are only getting a taste of what is in store for Sophia and for their family. Because some people were way more cruel than that. There is one experience that’s really stuck with Natalie. The family was in Philadelphia so Sophia could receive a surgery at the children’s hospital there.
Natalie Weaver: We were walking around Philadelphia, and these two teenage girls screamed at the top of their lungs when they saw her and walked by and started laughing. And that is a very pivotal moment for me because I felt like I broke. I would sometimes do this because I didn’t know how to handle it, and I would kind of go blackout almost. And I wanted to chase after them. I didn’t. But it was that feeling of just … it was horrifying, and it was depressing. And I remember going back to the hotel room and just crying. And so that began a journey of having to build up strength to just take my daughter to the grocery store and then to be knocked back down by people looking at her, saying mean things and then spending days depressed and trying to pull myself out of it for my daughter. When Sophia is almost 2, she gets a little brother, Alex. And three years later, a little sister named Lyla. Their family is growing, and it’s bringing even more love into Sophia’s life. These little siblings see Sophia as their big sister. But they were also gentle with her and understood early that she had different needs than them. They were eager to learn how to help give Sophia her medicine or intervene when she needed help. There’s something so pure about how little kids don’t see differences like adults do. It’s like the love they have for the people close to them doesn’t allow them to see that person from any negative point of view. That’s the relationship Natalie saw with her kids – they were just as protective of Sophia as she was. Natalie Weaver: Eventually we found out about her immune deficiency, so it wasn’t really safe to bring her out. So it was a reason for us to create a really special world in our home that was safe. And I did not want my daughter to experience that cruelty.
You cannot bubble wrap any child, cannot prevent them from experiencing pain … but Sophia has already — and will CONTINUE — to experience pain. And her family is going to make damn sure she won’t experience any more of it than necessary. So they take their love and create a very special cocoon to protect Sophia. Natalie Weaver: She had limited time on this earth and I did not want her time being spent watching people treat her horribly. So we remained private for a long time. Happy little world. It was great.

So Natalie, her husband, and her three kids are living in their special world at home. They loved to play music, Sophia was a big time Swiftie, and the whole family would have dance parties with lights and disco balls. Once the little kids were a bit bigger, they’d have family kickball games, and Sophia would push the ball with her wheelchair. When Sophia is 8, Natalie was contacted by some other moms of disabled kids, because their access to health care was about to change. Natalie Weaver: I felt forced to go in the public eye because our state was decreasing services for the medically complex kids in North Carolina. And I remember joining two other moms to fight against this change because it was providing Sophia lifesaving care, in-home nursing, covering costs that private insurance wouldn’t, which is in the tens of thousands. And I remember them saying, “We need to get public attention on this. We need to find someone who will speak about it publicly, go on the news.” And I hesitated and I said, “If no one else will, I will do it.” And I didn’t want to do it, but no one else did. So I did. And I realized I was publicly advocating for her the same way I privately advocated for her. And I was fierce and I was bold, and I was … felt more like myself and I wasn’t hidden anymore.
This is SUCH a huge shift for Natalie. She decides to put herself outside of the comfort zone of her family cocoon, and let other people into their special world. She’s hoping doing this will mean more people will understand what it takes to live like Sophia, and care for Sophia. She was advocating for the state to keep a program in Medicaid that allowed nurses to come into the home and treat Sophia. Natalie’s family depended on these nurses to give them a break. So she joined other parents to ask the state to not decrease services for kids like Sophia. This eventually transitioned into Natalie doing this kind of advocacy work on the national level – because at the time, the Trump administration was talking about making similar cuts to Medicaid and the Affordable Care Act that had protected people with pre-existing conditions. And because the healthcare debate was and is so polarized, as soon as Natalie was speaking on a national level, she started getting real hate. Natalie Weaver: I received death threats and death wishes, told how to murder my child. She was made fun of for the way she looked, and that was pretty devastating. I tried to remain strong and fight through it because I was trying to fight for her life literally, and fight for her health care that was life-saving health care that she could have lost. And also dealing with people being incredibly cruel. Making fun of her. Using her image to promote abortion, which is how my fight transitioned from health care to the fight to protect people with disabilities and facial differences online. But yes, I was getting a lot of hate from people who claim to be pro-life, calling my child a drain on services. “And why didn’t you kill her?” Those types of things. And then you see their profiles as pro-life. But really, it’s … you’re forced to give birth. And then at that point, no assistance for health care, no assistance for, you know, any types of supports that you need afterwards. You’re on your own. Or, I’m just going to abuse you and tell you what a drain on society your child is. The hatred was so vile that Natalie couldn’t just ignore it. She figured there might be a way to report these accounts or at least flag them for harassment. She thought wrong.
Natalie Weaver: There was nowhere to report hate speech towards people with disabilities. It’s in their policies. All of the social media giants policies all day, every day. You can find many reasons why this should be a violation, but there was nowhere to report it, and that was the problem. Going from someone who chose to live life privately to someone feeling like they had to publicly share their story so that I could fight for my child’s life, it was really difficult, and it was hard to receive those hateful comments, and it would make me want to quit constantly and hide away. This online hate felt worse than anything else Natalie experienced in Sophia’s life so far. It felt worse that the girls screaming at Sophia on the street in Philadelphia, worse than the woman at the pumpkin patch afraid to give her kid a sticker. It hurt deeper because anyone – everyone – could see it. And nobody could make it stop. Natalie Weaver: I found posts of Sophia images and videos on these accounts that have hundreds of thousands of followers. And their pages consist of disabilities and people with facial differences and comments like, “She has no friends, it’s her birthday. Please say happy birthday.” And while you think, “Okay, that might be harmless,” that’s actually a very harmful stereotype. It’s misinformation. And they’re using and exploiting my child because she was born with disabilities and facial differences – not only my child, but the thousands of posts that they’ve done. And it’s clickbait. They are benefiting in some way. They’re gaining clicks, likes, likely profiting from things like this. And these pages should not exist. And when I tried to report several of them, there is nowhere to report them exploiting my child because of her facial differences and disabilities. You can go through the community standards of Facebook and find so many reasons why this goes against their standards. But it means nothing if I cannot report it. And people shouldn’t be able to use people in this way, especially children or adults.
It’s scary, and it hurts, but Natalie keeps going, because there are a lot of families like hers. During this time, Natalie started a non-profit called Sophia’s Voice, which gives money to families with disabled people to cover medical devices and expenses. And a big part of the outreach was posting videos, doing TV appearances, and sharing the medical and emotional experiences that Sophia and her family had gone through. And Sophia got to be a part of this work. Natalie Weaver: She loved being involved. She did get a sense that there were people that weren’t as accepting. She didn’t care. She didn’t care. Sophia was told every single day that she was the most beautiful person in this world because there was no one else like her. She was loved unconditionally. And that was her life. And so hearing about someone being cruel or hateful, she didn’t care. But she was truly proud of the work that we were doing together to raise awareness, to make changes, to make the world better for people like her. And she would just beam with pride when I would share what we were doing, the interviews we were in. Of course, she loves the camera, and all of a sudden she was vibrant and making sounds and showing off for the camera. She just loved it.
And Sophia was also, in one very important way … also a regular kid.
Natalie Weaver: She would roll her eyes at me because I’m annoying. She couldn’t speak words all of the time, but she would work really hard to say the word “annoying” when speaking about me, which is her personality. And when she got excited, she would say, “Hell yeah!” And we didn’t stop her. When your child can’t speak words, cuss words have no meaning. It’s just a celebration.
It’s just a celebration, and celebrating is important to Sophia’s family. Because from the time Sophia was born, until she was 10 years old, she had more than 30 surgeries. They helped improve her quality of life and prevented the loss of any abilities she already had. But at a certain point, the surgeries stopped being helpful.
Natalie Weaver: And as the years went on, she wasn’t well and she had more damage and was responding to surgeries really in a bad way and almost died several times. And we began to realize her body was changing. It was tired, globally, just everything was responding differently. And so we had to make the horrible, horrible decision that we couldn’t continue on putting her through that, which was the hardest decision I’ve ever made. But we had to make it, because we knew what surgeries were ahead – like cutting part of her tongue out so that she could breathe, traching her, which was difficult because of her immune deficiency and other conditions, a spine surgery that she would need blood infusions. She was going to lose her kidney. And it’s like … this is going beyond. We can try to fix everything and extend her life for as long as medically possible, but, you know, there was a time when it switched, and she switched and I said, “I’m listening to your body, Sofia, and I think we should be done with doctors. We should be done with these medications. We should be done with needles and pain and surgeries, because what’s to come is really horrifying, and what kind of quality of life would she have.” And she looked at me and signed and said, “All done!” And she was very excited about not going and living her life at the hospital and doctors. I thought we had a year. I really thought that, you know, taking her off of all the medications that made her sleepy and groggy. And I just … I didn’t expect it to only take three months. When they took Sophia off her medications, and decided to walk away from doctors, Natalie and her family wanted to make sure the end of Sophia’s life was filled with joy.
Natalie Weaver: We got to do some amazing things. She got to watch a movie at a theater privately. We toured the Georgia Aquarium privately. She went to a salon for the first time. She got green highlights because it was her favorite color, and she was more alive, more vocal, more aware than she had been in years, because the medication was out of her system. And it was just a really, really beautiful experience. And there were so many other things like rollerskating rink opened up and we got to listen to her favorite Taylor Swift songs and roller skate around. It was just a really beautiful time. Sophia died in 2019 when she was 10 and a half years old. Natalie Weaver: Everything I did specifically started because of Sophia. I had the extreme passion when she was here because I was fighting for her life. I was fighting for her health care. I was fighting to make this world a better place for her. And then she was no longer here. And I just felt lost. I became a person who could get up and speak in front of crowds and speak in front of a TV because of her. I never wanted to be anything other than a mom. That was my plan. And I had become this person. And then she was gone. So where do I go from here? I collapsed, and I didn’t know what I was going to do. And I promised her before she died that I would never stop fighting to keep her story and her impact alive and making the world a better place for people like her. But I honestly, almost every day, try to quit. I try to stop, because it’s such a struggle without your baby. But I feel like it’s her in me saying, “No, you’re not allowed to quit. You’ve got to keep going.” And so I just keep going.
We will be right back.

Remember that exercise we did at the beginning, where we asked you to imagine a child you love being used for clickbait? How much it would hurt, how unfair it might feel? Now imagine that the child you love is dead, that every day you wake up aching to feel them in your arms. You long for the smell of their head (why do kids have the best smelling heads?). You are tasked with living the rest of your days on this earth without them, with tending not only to your own broken heart, but the hearts of their surviving siblings.
And on the internet, a photo of that child you long for, is now an advertisement for eugenics. For disability inspiration. For “10 Photos That Will Haunt You.”
Maybe your heart would break even more. Maybe it would ignite with a rage more powerful than the burning of a thousand suns. Maybe both.
Because when Sophia’s life ends, Natalie’s work isn’t even close to done.
There’s no putting the toothpaste back in the tube. Sophia’s images were out in the world because Natalie had become an advocate for providing children with disabilities the healthcare that they needed.
Natalie started to turn her energy that was once used for activism in the healthcare space to advocating for better reporting options on social media platforms. Her first big win came when she convinced Twitter to include the option to report disability harassment on their platform after seeing a hateful post using Sophia’s image. Natalie Weaver: I asked Twitter to remove it, and they said there was no violation. And so I fought against that. And the story went viral, and was across the news nationally, internationally. And within a month’s time, Twitter reversed that ruling and took it down. Twitter responded, and they included disability in their reporting tool so that we would have a proper place to report this type of hate. So each social media giant is different in the way that they respond, ignore. Twitter, obviously, they had a lot of pressure on them, and they made the changes very quick and they were kind about it and understood what they did wrong. And so they’ve improved their reporting tool drastically since even they made the change that I was requesting, which is wonderful. Instagram responded, and actually the head of Instagram responded to me directly, and we emailed back and forth for a while discussing what the issues were. And he was so kind and probably one of the best people that I’ve worked with in regards to this, having a heart and really caring. And Instagram has made some really wonderful changes. Facebook has been a little bit harder to access. They ignored my many requests. And when they finally did respond, they sent me to someone to set up meetings, and even still, they haven’t done anything to make the appropriate changes to better protect people online or to update their reporting tools. And I get excuses as to why it’s going to take forever to do that, though, they can act as quickly as they want to act. And then YouTube has given me access to directly report to someone when someone is being abused online. And that’s been wonderful. Though, I always want to make the change so that it impacts everyone in a positive way. And as you can imagine, trying to hold huge corporate tech behemoths like Facebook or Twitter to any kind of accountability is a daunting, exhausting, and often thankless task.
Natalie Weaver: I can’t work as hard as I used to and as much. I have to take more breaks. The emotions of grief can take me down at any given moment, so I pace myself. I think I’m actually learning to balance better. But they all just need to step it up when it comes to protecting their users online, and especially people with disabilities and facial differences. And everyone. I mean, to be honest, everyone shouldn’t have to be abused online. And they could do it. They’re billion-dollar companies. It’s just not enough people are yelling about it. And that’s the only way I get people to take my daughter’s image down is having to yell about it. And I shouldn’t have to raise awareness or go viral for social media giants to remove a post about my child being murdered.
Because Sophia is also a big sister. And Sophia’s little siblings shouldn’t have to see that.
Natalie Weaver: At a younger age, I shielded them from it. But as 11- and 8-year olds, they know how to Google my name, and they find things, and they’re like, “Oh, my gosh, look at all this stuff, Mom!” So they began to read the comments, and I realized I can’t shield them from this. And I want them to be advocates, and I want them to live in reality and understand that the hate that exists towards disabled people and people with facial differences and unfortunately their sister. And so they’ve adjusted to it. At first I had to explain why someone would feel this way about their sister, which is difficult to do because I will never understand that type of hate. But they adjusted to it. And they watched me grow as a person. They watched me become vocal and bold and advocate. And so they are learning that as well. They would advocate for their sister. They would beg to be a part of the advocacy work. And so there are some interviews with them in there, and they’re a part of raising awareness. Like, she’s disabled. She looks different. She’s absolutely loved and amazing. So they learned to advocate for their sister as well. And they just understand that there’s people out there that have some serious issues and hate in their heart. And they’re pretty good about it. Natalie Weaver: So I’ve had to learn what is good for me, what’s good for my mental health. Social media is this hamster wheel. And if you are a content creator, you know that you have to continually create content. Because if you take a week break, two weeks break, when you decide to get back on there, you aren’t getting as many views, you aren’t able to raise as much awareness. And so it makes you feel like you’ve got to continue on. And I’ve had to reset my mind, my expectations that if I’m reaching one person, it’s making a difference, and you can’t stay on that hamster wheel because it’s not sustainable. So it’s a tough thing, but I have to learn to balance. But it’s so easy to get sucked back in. And so I have to constantly remind myself, “Okay, time to to back up and take a break.” And my mental health is a priority. My family, my children who are still living are a priority. And so I take my breaks when I can. Natalie Weaver: On the other end is the beautiful side to it. I’ve been able to connect with parents that are like me, that have kids with facial differences and disabilities. I’ve never been able to do that within my community, my neighborhood. So it’s such a beautiful thing to have these parents that understand what it’s like. And I’ve experienced the worst of humanity online, but I’ve also experienced the best of humanity online. And I will say without a doubt, there is so much more good than bad. I would say 5% of it is bad, but it can be difficult to manage those things. I have social media accounts pretty much on every social media site there is, and you’re just getting constant comments, opinions, judgments, and you have to learn to let them go. Natalie Weaver: We should all be able to use the Internet and social media in the same ways to build community, to raise awareness, without being abused. I have friends who have typical kids that post an image of their child at Christmas and everybody’s … that’s wonderful. There’s no issue. I do the same, and I’m told to kill my child. I’m told to sterilize myself, because I don’t shouldn’t have children like this. I’m abused, my child’s abused. Her image is used. And that shouldn’t be allowed. A lot of people will fight and say, “Free speech!” Well, you’re signing on to this business, this company, and they have policies and they have standards. So we can agree that abusing people online for the way they were born is not okay. I would like these billion-dollar social media companies to put money into stopping the abuse. And when there are pages dedicated to using and exploiting people because they have disabilities and facial differences, those should be removed. And at the very least, there should be a place to report it. And in many cases, disability is the last thing to be thought about. And even worse, facial differences. People are fighting for equality, disability, facial differences are not included. And that’s what I’m trying to do, is to raise awareness with these social media giants that we need to better protect people with disabilities and facial differences online from all of this type of hate and exploitation and these harmful stereotypes and degrading comments that are occurring.
Natalie Weaver: It’s like I’m fighting for her name, her honor. And you’re not going to abuse my child like this. You’re not going to abuse anyone’s child like this. And that’s what drives me. And there’s not this huge pressure of that fight or flight mode that I was always in, like, “I have to keep my daughter alive. I have to keep her health care services so my family doesn’t go into financial ruins. I have to do all of these things.” So now I can do it more calmly and on my own terms. I wouldn’t call myself calm, because sometimes I get really fired up still. But it’s definitely evolved and it’s changed. And it’s more on my time when I can do it, you know, for my mental health and those types of things. But as much as I’ve tried to talk myself out of doing it, there’s just a force within me. And I call it Sophia stopping me from quitting.
We want you to try another exercise now. We want you to imagine that you’re online and you see a photo of Sophia or a person like her, in one of those clickbaity ads or one of those weird Facebook posts. Natalie Weaver: The best thing to do is to ignore it, to report it, to block them. But if we all speak out against it, then it makes a difference. If we all speak up about social media giants that are protecting people online … then they are more willing to listen.
I’m Nora McInerny and this has been “Terrible, Thanks for Asking.” Thank you so much to Natalie Weaver for sharing her beautiful Sophia with us and with the world and for all the work that she has done. You can help other families with medically fragile kids by donating to Sophia’s Voice. You can learn more about the organization at sophias-voice dot com. You can follow Natalie on Instagram at nataliecweaver. I’m Nora McInerny and this is “Terrible, Thanks for Asking,” which I think I already said. Our team is Marcel Malekebu, Jordan Turgeon, Megan Palmer, Claire McInerny, Larissa Witcher and Eugene Kidd. You can call us with comments, concerns, questions at 612-568-4441. Or email us at [email protected] We are a production of Feelings & Co, that is the company I made. It’s … here it is. Here it is!
As always, our credits are … credit-y. There we are. There we are. Our theme music is by Geoffrey Lamar Wilson and you can find us at TTFA.org or on Instagram at ttfapodcast. I’m also an author of several books, which you can look up or buy wherever you like to get books. My last book is called Bad Vibes Only. It’s an essay collection, and I think it’s both funny and thoughtful and only lightly sad. I will say that. I will warn you, it’s only lightly sad. Okay, now that’s really it.

When Natalie Weaver stepped into the media spotlight to advocate for her 8-year-old daughter Sophia’s right to health care, she expected some pushback. She didn’t expect the flood of online hate and death threats that came her way … or for images of Sophia to end up on the wrong, hurtful, abusive side of the Internet.

Learn more about Natalie’s work for families with medically fragile kids at Sophias-Voice.com.

About Terrible, Thanks for Asking

Terrible, Thanks for Asking is more than just a podcast (but yeah, it’s a podcast).

It’s a show that makes space for how it really feels to go through the hard things in life, and a community of people who get it.

TTFA on social: TTFA on Instagram | TTFA on Facebook

Learn more about your ad choices. Visit megaphone.fm/adchoices

Transcripts may not appear in their final version and are subject to change.


You know when you’re on a website, and you scroll all the way to the bottom, and the content just gets … weird?
I was recently on the website of a local TV news station. I scrolled past the legitimate stories about local politics, the effects of the never-ending drought here in the Southwest, right down to the bottom. There’s a … BIG AIR QUOTES HERE, story, with a headline that reads, “T-shirt fails you can’t unsee.” The photo under this headline is of an attractive woman in a baseball stadium, I guess? And it’s cropped from the neck up so you can’t see her t-shirt. OBVIOUSLY they want me to click, so I can see her shirt, so I can see that fail that I can’t unsee. And of course I do. And the, again, huge air quotes, STORY, has nothing to do with the image of the woman OR EVEN T-SHIRTS!
It’s just clickbait!
And this happens on Facebook and Instagram, too. There will be a fuzzy, lo-res photo of a person from a page like, INSPIRINGTHINGSDAILY, and it will be almost meme-style, a bunch of writing about how the person in this photo went through something, and it didn’t get them down, and one like equals one hug, and the post has like 10,000 likes — sorry, hugs — and you’re like, “This story is not real.” It’s not real. BUT … that photo is real. That woman in the baseball stadium is real. And I for one have no idea where that picture came from. Who is she? And what would it feel like to be scrolling the internet and see your own photo being used as an example of a t-shirt fail? Or as some kind of weird inspiration porn for a bunch of strangers? This happens, and it’s something that is often legal, depending on where the original photo was uploaded, but it still feels icky to me. Or, depending on who you are…interesting or inspiring? But to me it feels icky. Now, imagine that you’re scrolling the internet … and you see a photo of your child used like this. Instead of a t-shirt fail, it’s a photo of your daughter. If you don’t have a daughter, just imagine that you do. Or imagine a kid in your life that you love and imagine that a photo you took of them, a moment you HAD to capture because it was just so beautiful … is on a website that you didn’t know it would be on. And the headline — again, using that term very loosely — is something like this:
Natalie Weaver: Cops found this girl 12 years after her mom made her have plastic surgery. That’s Natalie Weaver, and the title she’s reading is from a video that is using an image of her daughter Sophia’s face to illustrate the plastic surgery the headline alludes to. A plastic surgery that Sophia never got. And there’s a reason that they used Sophia’s image.
Natalie Weaver: So Sophia was born with facial differences, and her mouth wouldn’t close all the way, and she didn’t have fully formed lips. She had a really tiny button chin and really tiny ears that I thought were the cutest things ever. And she was born without the skin underneath her eyes. So it was just redness and it was very obvious that she looked different. And so the first time I saw Sophia’s photo used was when someone stole her image and used it to promote eugenics on Twitter. I have seen people use it in their profiles as jokes. I’ve seen them use it as clickbait or as a way to make fun of her. Sophia was Natalie’s first child, and when Natalie went in for her 34-week ultrasound, the doctor saw the images and immediately sent Natalie to see a specialist at a different hospital to get a more detailed ultrasound.
Natalie Weaver: You could see the looks on their face. They didn’t know what they were seeing. They didn’t know what to say. And eventually they said, “Your daughter might not survive birth. She has deformities to her face, hands, and feet. And we’ve never seen anyone like her.” They threw out a few craniofacial syndrome names of things, which I had never heard of. It felt like I was just falling into a vortex, and the weight was so heavy. And I remember my husband and I just drove home and didn’t say a word. We were both in complete shock.
After a normal, unsurprising pregnancy, Natalie had just four weeks to prepare for a new reality before Sophia was due. A reality in which Sophia may not survive birth – and if she did would live with significant disabilities.
Natalie Weaver: I never imagined that my child might not be able to breathe on her own or might be in pain and have differences. It wasn’t even in my mind. It was very, very difficult waking up with a weight on your shoulders of not knowing what was going to happen. I didn’t think I was strong enough to handle anything of what was to come.
Whether or not Natalie felt like she was strong enough, Sophia was born on October 20th, 2008 in a room full of specialists. The birth was easy — as far as births go — and then …
Natalie Weaver: They immediately took her to the room, to the other side of the room, and I didn’t get to see her. And I kept repeating, “Is she okay? Is she okay?” I’m pretty sure I said it about a half a dozen times and no one would answer. And I would just kind of scan the room for people’s eyes, like, what? What can I learn from how they’re looking? And I remember they finally laid her on my chest. And I was, I was in shock. She had more differences that they could see in an ultrasound and prepare me for. And I just remember it felt like someone else, though it was me, saying, “You need to comfort her.” And I reached out to touch her, and then they immediately took her away. I remember recovering in the room and they were like, “Okay, she’s done with all of her testing,” hours later, “Do you want to go see her?” And I put it off. I was afraid to face a new reality, one that I didn’t know. And I think my shock had made me not remember what she looked like. So in my head I was fantasizing that everything was okay. They were wrong. But finally that night I went to see her, and that changed everything. All the four weeks of pain and fear and stress melted away when the nurse picked her up and was baby talking her. And it was like this moment of, “Oh my gosh, she’s a baby. She’s my baby.” And so she put her in my arms. I broke down crying. The nurse held both of us. And from that moment, something took over. And I knew that I was going to fight for her no matter what and make sure she had everything she needed, number one being love.
Sophia spent a month in the NICU. Her first surgery was when she was nine days old, to insert a feeding tube. Natalie and her husband had to learn how to use this tube because it was the main way they fed Sophia. They also had to take on other medical procedures at home. But in those first two years, Sophia was hitting developmental milestones. She held her head up, she played with toys, she talked and babbled! She did everything a toddler was supposed to do, she just didn’t look like the other toddlers. And the two of them felt hopeful for their little girl.
Natalie Weaver: We thought we would just have the differences to contend with and work with and get her support for that. And at around two and a half years old, she began to regress.
Sophia was diagnosed with Rett Syndrome. Rett is an extremely rare genetic mutation that affects brain development, primarily in girls. It can cause seizures, loss of speech, loss of motor function.
Natalie Weaver: Sophia definitely had a more severe form. She actually had a mutation on her gene that was never documented before. Of course, that’s Sophia’s style, because she doesn’t do anything like anyone else.
Most kids don’t have to do daily therapies, be tube fed or take multiple medications a day, but Natalie made sure that even if Sophia had her own style … she got to have as many typical childhood experiences as possible.
Natalie Weaver: I remember her first pumpkin patch visit and taking her there, and my husband and I are taking pictures and she’s got her cute pumpkin sweater on and the lady checking the kids out was really animated with them and excited and giving them stickers and making it a really fun thing for them. And the moment we walked up to buy the pumpkin, she would not even look us in our eyes. She would not look up from the register. I remember thinking, “Wow,” you know, “She’s a child, too. This is her first experience.” So my husband did grab the sticker and said, “Sophia, we’re giving you a sticker.”
And maybe that sounds like a small thing, not getting a sticker. But if you’ve ever loved a kid, you know it doesn’t feel like a small thing. Even if the kid doesn’t register it, witnessing how the world can and will hurt them someday is so brutal.
So yeah, Natalie’s husband grabs that sticker. Their daughter. Is getting. A fricking sticker.
And Natalie and her husband are only getting a taste of what is in store for Sophia and for their family. Because some people were way more cruel than that. There is one experience that’s really stuck with Natalie. The family was in Philadelphia so Sophia could receive a surgery at the children’s hospital there.
Natalie Weaver: We were walking around Philadelphia, and these two teenage girls screamed at the top of their lungs when they saw her and walked by and started laughing. And that is a very pivotal moment for me because I felt like I broke. I would sometimes do this because I didn’t know how to handle it, and I would kind of go blackout almost. And I wanted to chase after them. I didn’t. But it was that feeling of just … it was horrifying, and it was depressing. And I remember going back to the hotel room and just crying. And so that began a journey of having to build up strength to just take my daughter to the grocery store and then to be knocked back down by people looking at her, saying mean things and then spending days depressed and trying to pull myself out of it for my daughter. When Sophia is almost 2, she gets a little brother, Alex. And three years later, a little sister named Lyla. Their family is growing, and it’s bringing even more love into Sophia’s life. These little siblings see Sophia as their big sister. But they were also gentle with her and understood early that she had different needs than them. They were eager to learn how to help give Sophia her medicine or intervene when she needed help. There’s something so pure about how little kids don’t see differences like adults do. It’s like the love they have for the people close to them doesn’t allow them to see that person from any negative point of view. That’s the relationship Natalie saw with her kids – they were just as protective of Sophia as she was. Natalie Weaver: Eventually we found out about her immune deficiency, so it wasn’t really safe to bring her out. So it was a reason for us to create a really special world in our home that was safe. And I did not want my daughter to experience that cruelty.
You cannot bubble wrap any child, cannot prevent them from experiencing pain … but Sophia has already — and will CONTINUE — to experience pain. And her family is going to make damn sure she won’t experience any more of it than necessary. So they take their love and create a very special cocoon to protect Sophia. Natalie Weaver: She had limited time on this earth and I did not want her time being spent watching people treat her horribly. So we remained private for a long time. Happy little world. It was great.

So Natalie, her husband, and her three kids are living in their special world at home. They loved to play music, Sophia was a big time Swiftie, and the whole family would have dance parties with lights and disco balls. Once the little kids were a bit bigger, they’d have family kickball games, and Sophia would push the ball with her wheelchair. When Sophia is 8, Natalie was contacted by some other moms of disabled kids, because their access to health care was about to change. Natalie Weaver: I felt forced to go in the public eye because our state was decreasing services for the medically complex kids in North Carolina. And I remember joining two other moms to fight against this change because it was providing Sophia lifesaving care, in-home nursing, covering costs that private insurance wouldn’t, which is in the tens of thousands. And I remember them saying, “We need to get public attention on this. We need to find someone who will speak about it publicly, go on the news.” And I hesitated and I said, “If no one else will, I will do it.” And I didn’t want to do it, but no one else did. So I did. And I realized I was publicly advocating for her the same way I privately advocated for her. And I was fierce and I was bold, and I was … felt more like myself and I wasn’t hidden anymore.
This is SUCH a huge shift for Natalie. She decides to put herself outside of the comfort zone of her family cocoon, and let other people into their special world. She’s hoping doing this will mean more people will understand what it takes to live like Sophia, and care for Sophia. She was advocating for the state to keep a program in Medicaid that allowed nurses to come into the home and treat Sophia. Natalie’s family depended on these nurses to give them a break. So she joined other parents to ask the state to not decrease services for kids like Sophia. This eventually transitioned into Natalie doing this kind of advocacy work on the national level – because at the time, the Trump administration was talking about making similar cuts to Medicaid and the Affordable Care Act that had protected people with pre-existing conditions. And because the healthcare debate was and is so polarized, as soon as Natalie was speaking on a national level, she started getting real hate. Natalie Weaver: I received death threats and death wishes, told how to murder my child. She was made fun of for the way she looked, and that was pretty devastating. I tried to remain strong and fight through it because I was trying to fight for her life literally, and fight for her health care that was life-saving health care that she could have lost. And also dealing with people being incredibly cruel. Making fun of her. Using her image to promote abortion, which is how my fight transitioned from health care to the fight to protect people with disabilities and facial differences online. But yes, I was getting a lot of hate from people who claim to be pro-life, calling my child a drain on services. “And why didn’t you kill her?” Those types of things. And then you see their profiles as pro-life. But really, it’s … you’re forced to give birth. And then at that point, no assistance for health care, no assistance for, you know, any types of supports that you need afterwards. You’re on your own. Or, I’m just going to abuse you and tell you what a drain on society your child is. The hatred was so vile that Natalie couldn’t just ignore it. She figured there might be a way to report these accounts or at least flag them for harassment. She thought wrong.
Natalie Weaver: There was nowhere to report hate speech towards people with disabilities. It’s in their policies. All of the social media giants policies all day, every day. You can find many reasons why this should be a violation, but there was nowhere to report it, and that was the problem. Going from someone who chose to live life privately to someone feeling like they had to publicly share their story so that I could fight for my child’s life, it was really difficult, and it was hard to receive those hateful comments, and it would make me want to quit constantly and hide away. This online hate felt worse than anything else Natalie experienced in Sophia’s life so far. It felt worse that the girls screaming at Sophia on the street in Philadelphia, worse than the woman at the pumpkin patch afraid to give her kid a sticker. It hurt deeper because anyone – everyone – could see it. And nobody could make it stop. Natalie Weaver: I found posts of Sophia images and videos on these accounts that have hundreds of thousands of followers. And their pages consist of disabilities and people with facial differences and comments like, “She has no friends, it’s her birthday. Please say happy birthday.” And while you think, “Okay, that might be harmless,” that’s actually a very harmful stereotype. It’s misinformation. And they’re using and exploiting my child because she was born with disabilities and facial differences – not only my child, but the thousands of posts that they’ve done. And it’s clickbait. They are benefiting in some way. They’re gaining clicks, likes, likely profiting from things like this. And these pages should not exist. And when I tried to report several of them, there is nowhere to report them exploiting my child because of her facial differences and disabilities. You can go through the community standards of Facebook and find so many reasons why this goes against their standards. But it means nothing if I cannot report it. And people shouldn’t be able to use people in this way, especially children or adults.
It’s scary, and it hurts, but Natalie keeps going, because there are a lot of families like hers. During this time, Natalie started a non-profit called Sophia’s Voice, which gives money to families with disabled people to cover medical devices and expenses. And a big part of the outreach was posting videos, doing TV appearances, and sharing the medical and emotional experiences that Sophia and her family had gone through. And Sophia got to be a part of this work. Natalie Weaver: She loved being involved. She did get a sense that there were people that weren’t as accepting. She didn’t care. She didn’t care. Sophia was told every single day that she was the most beautiful person in this world because there was no one else like her. She was loved unconditionally. And that was her life. And so hearing about someone being cruel or hateful, she didn’t care. But she was truly proud of the work that we were doing together to raise awareness, to make changes, to make the world better for people like her. And she would just beam with pride when I would share what we were doing, the interviews we were in. Of course, she loves the camera, and all of a sudden she was vibrant and making sounds and showing off for the camera. She just loved it.
And Sophia was also, in one very important way … also a regular kid.
Natalie Weaver: She would roll her eyes at me because I’m annoying. She couldn’t speak words all of the time, but she would work really hard to say the word “annoying” when speaking about me, which is her personality. And when she got excited, she would say, “Hell yeah!” And we didn’t stop her. When your child can’t speak words, cuss words have no meaning. It’s just a celebration.
It’s just a celebration, and celebrating is important to Sophia’s family. Because from the time Sophia was born, until she was 10 years old, she had more than 30 surgeries. They helped improve her quality of life and prevented the loss of any abilities she already had. But at a certain point, the surgeries stopped being helpful.
Natalie Weaver: And as the years went on, she wasn’t well and she had more damage and was responding to surgeries really in a bad way and almost died several times. And we began to realize her body was changing. It was tired, globally, just everything was responding differently. And so we had to make the horrible, horrible decision that we couldn’t continue on putting her through that, which was the hardest decision I’ve ever made. But we had to make it, because we knew what surgeries were ahead – like cutting part of her tongue out so that she could breathe, traching her, which was difficult because of her immune deficiency and other conditions, a spine surgery that she would need blood infusions. She was going to lose her kidney. And it’s like … this is going beyond. We can try to fix everything and extend her life for as long as medically possible, but, you know, there was a time when it switched, and she switched and I said, “I’m listening to your body, Sofia, and I think we should be done with doctors. We should be done with these medications. We should be done with needles and pain and surgeries, because what’s to come is really horrifying, and what kind of quality of life would she have.” And she looked at me and signed and said, “All done!” And she was very excited about not going and living her life at the hospital and doctors. I thought we had a year. I really thought that, you know, taking her off of all the medications that made her sleepy and groggy. And I just … I didn’t expect it to only take three months. When they took Sophia off her medications, and decided to walk away from doctors, Natalie and her family wanted to make sure the end of Sophia’s life was filled with joy.
Natalie Weaver: We got to do some amazing things. She got to watch a movie at a theater privately. We toured the Georgia Aquarium privately. She went to a salon for the first time. She got green highlights because it was her favorite color, and she was more alive, more vocal, more aware than she had been in years, because the medication was out of her system. And it was just a really, really beautiful experience. And there were so many other things like rollerskating rink opened up and we got to listen to her favorite Taylor Swift songs and roller skate around. It was just a really beautiful time. Sophia died in 2019 when she was 10 and a half years old. Natalie Weaver: Everything I did specifically started because of Sophia. I had the extreme passion when she was here because I was fighting for her life. I was fighting for her health care. I was fighting to make this world a better place for her. And then she was no longer here. And I just felt lost. I became a person who could get up and speak in front of crowds and speak in front of a TV because of her. I never wanted to be anything other than a mom. That was my plan. And I had become this person. And then she was gone. So where do I go from here? I collapsed, and I didn’t know what I was going to do. And I promised her before she died that I would never stop fighting to keep her story and her impact alive and making the world a better place for people like her. But I honestly, almost every day, try to quit. I try to stop, because it’s such a struggle without your baby. But I feel like it’s her in me saying, “No, you’re not allowed to quit. You’ve got to keep going.” And so I just keep going.
We will be right back.

Remember that exercise we did at the beginning, where we asked you to imagine a child you love being used for clickbait? How much it would hurt, how unfair it might feel? Now imagine that the child you love is dead, that every day you wake up aching to feel them in your arms. You long for the smell of their head (why do kids have the best smelling heads?). You are tasked with living the rest of your days on this earth without them, with tending not only to your own broken heart, but the hearts of their surviving siblings.
And on the internet, a photo of that child you long for, is now an advertisement for eugenics. For disability inspiration. For “10 Photos That Will Haunt You.”
Maybe your heart would break even more. Maybe it would ignite with a rage more powerful than the burning of a thousand suns. Maybe both.
Because when Sophia’s life ends, Natalie’s work isn’t even close to done.
There’s no putting the toothpaste back in the tube. Sophia’s images were out in the world because Natalie had become an advocate for providing children with disabilities the healthcare that they needed.
Natalie started to turn her energy that was once used for activism in the healthcare space to advocating for better reporting options on social media platforms. Her first big win came when she convinced Twitter to include the option to report disability harassment on their platform after seeing a hateful post using Sophia’s image. Natalie Weaver: I asked Twitter to remove it, and they said there was no violation. And so I fought against that. And the story went viral, and was across the news nationally, internationally. And within a month’s time, Twitter reversed that ruling and took it down. Twitter responded, and they included disability in their reporting tool so that we would have a proper place to report this type of hate. So each social media giant is different in the way that they respond, ignore. Twitter, obviously, they had a lot of pressure on them, and they made the changes very quick and they were kind about it and understood what they did wrong. And so they’ve improved their reporting tool drastically since even they made the change that I was requesting, which is wonderful. Instagram responded, and actually the head of Instagram responded to me directly, and we emailed back and forth for a while discussing what the issues were. And he was so kind and probably one of the best people that I’ve worked with in regards to this, having a heart and really caring. And Instagram has made some really wonderful changes. Facebook has been a little bit harder to access. They ignored my many requests. And when they finally did respond, they sent me to someone to set up meetings, and even still, they haven’t done anything to make the appropriate changes to better protect people online or to update their reporting tools. And I get excuses as to why it’s going to take forever to do that, though, they can act as quickly as they want to act. And then YouTube has given me access to directly report to someone when someone is being abused online. And that’s been wonderful. Though, I always want to make the change so that it impacts everyone in a positive way. And as you can imagine, trying to hold huge corporate tech behemoths like Facebook or Twitter to any kind of accountability is a daunting, exhausting, and often thankless task.
Natalie Weaver: I can’t work as hard as I used to and as much. I have to take more breaks. The emotions of grief can take me down at any given moment, so I pace myself. I think I’m actually learning to balance better. But they all just need to step it up when it comes to protecting their users online, and especially people with disabilities and facial differences. And everyone. I mean, to be honest, everyone shouldn’t have to be abused online. And they could do it. They’re billion-dollar companies. It’s just not enough people are yelling about it. And that’s the only way I get people to take my daughter’s image down is having to yell about it. And I shouldn’t have to raise awareness or go viral for social media giants to remove a post about my child being murdered.
Because Sophia is also a big sister. And Sophia’s little siblings shouldn’t have to see that.
Natalie Weaver: At a younger age, I shielded them from it. But as 11- and 8-year olds, they know how to Google my name, and they find things, and they’re like, “Oh, my gosh, look at all this stuff, Mom!” So they began to read the comments, and I realized I can’t shield them from this. And I want them to be advocates, and I want them to live in reality and understand that the hate that exists towards disabled people and people with facial differences and unfortunately their sister. And so they’ve adjusted to it. At first I had to explain why someone would feel this way about their sister, which is difficult to do because I will never understand that type of hate. But they adjusted to it. And they watched me grow as a person. They watched me become vocal and bold and advocate. And so they are learning that as well. They would advocate for their sister. They would beg to be a part of the advocacy work. And so there are some interviews with them in there, and they’re a part of raising awareness. Like, she’s disabled. She looks different. She’s absolutely loved and amazing. So they learned to advocate for their sister as well. And they just understand that there’s people out there that have some serious issues and hate in their heart. And they’re pretty good about it. Natalie Weaver: So I’ve had to learn what is good for me, what’s good for my mental health. Social media is this hamster wheel. And if you are a content creator, you know that you have to continually create content. Because if you take a week break, two weeks break, when you decide to get back on there, you aren’t getting as many views, you aren’t able to raise as much awareness. And so it makes you feel like you’ve got to continue on. And I’ve had to reset my mind, my expectations that if I’m reaching one person, it’s making a difference, and you can’t stay on that hamster wheel because it’s not sustainable. So it’s a tough thing, but I have to learn to balance. But it’s so easy to get sucked back in. And so I have to constantly remind myself, “Okay, time to to back up and take a break.” And my mental health is a priority. My family, my children who are still living are a priority. And so I take my breaks when I can. Natalie Weaver: On the other end is the beautiful side to it. I’ve been able to connect with parents that are like me, that have kids with facial differences and disabilities. I’ve never been able to do that within my community, my neighborhood. So it’s such a beautiful thing to have these parents that understand what it’s like. And I’ve experienced the worst of humanity online, but I’ve also experienced the best of humanity online. And I will say without a doubt, there is so much more good than bad. I would say 5% of it is bad, but it can be difficult to manage those things. I have social media accounts pretty much on every social media site there is, and you’re just getting constant comments, opinions, judgments, and you have to learn to let them go. Natalie Weaver: We should all be able to use the Internet and social media in the same ways to build community, to raise awareness, without being abused. I have friends who have typical kids that post an image of their child at Christmas and everybody’s … that’s wonderful. There’s no issue. I do the same, and I’m told to kill my child. I’m told to sterilize myself, because I don’t shouldn’t have children like this. I’m abused, my child’s abused. Her image is used. And that shouldn’t be allowed. A lot of people will fight and say, “Free speech!” Well, you’re signing on to this business, this company, and they have policies and they have standards. So we can agree that abusing people online for the way they were born is not okay. I would like these billion-dollar social media companies to put money into stopping the abuse. And when there are pages dedicated to using and exploiting people because they have disabilities and facial differences, those should be removed. And at the very least, there should be a place to report it. And in many cases, disability is the last thing to be thought about. And even worse, facial differences. People are fighting for equality, disability, facial differences are not included. And that’s what I’m trying to do, is to raise awareness with these social media giants that we need to better protect people with disabilities and facial differences online from all of this type of hate and exploitation and these harmful stereotypes and degrading comments that are occurring.
Natalie Weaver: It’s like I’m fighting for her name, her honor. And you’re not going to abuse my child like this. You’re not going to abuse anyone’s child like this. And that’s what drives me. And there’s not this huge pressure of that fight or flight mode that I was always in, like, “I have to keep my daughter alive. I have to keep her health care services so my family doesn’t go into financial ruins. I have to do all of these things.” So now I can do it more calmly and on my own terms. I wouldn’t call myself calm, because sometimes I get really fired up still. But it’s definitely evolved and it’s changed. And it’s more on my time when I can do it, you know, for my mental health and those types of things. But as much as I’ve tried to talk myself out of doing it, there’s just a force within me. And I call it Sophia stopping me from quitting.
We want you to try another exercise now. We want you to imagine that you’re online and you see a photo of Sophia or a person like her, in one of those clickbaity ads or one of those weird Facebook posts. Natalie Weaver: The best thing to do is to ignore it, to report it, to block them. But if we all speak out against it, then it makes a difference. If we all speak up about social media giants that are protecting people online … then they are more willing to listen.
I’m Nora McInerny and this has been “Terrible, Thanks for Asking.” Thank you so much to Natalie Weaver for sharing her beautiful Sophia with us and with the world and for all the work that she has done. You can help other families with medically fragile kids by donating to Sophia’s Voice. You can learn more about the organization at sophias-voice dot com. You can follow Natalie on Instagram at nataliecweaver. I’m Nora McInerny and this is “Terrible, Thanks for Asking,” which I think I already said. Our team is Marcel Malekebu, Jordan Turgeon, Megan Palmer, Claire McInerny, Larissa Witcher and Eugene Kidd. You can call us with comments, concerns, questions at 612-568-4441. Or email us at [email protected] We are a production of Feelings & Co, that is the company I made. It’s … here it is. Here it is!
As always, our credits are … credit-y. There we are. There we are. Our theme music is by Geoffrey Lamar Wilson and you can find us at TTFA.org or on Instagram at ttfapodcast. I’m also an author of several books, which you can look up or buy wherever you like to get books. My last book is called Bad Vibes Only. It’s an essay collection, and I think it’s both funny and thoughtful and only lightly sad. I will say that. I will warn you, it’s only lightly sad. Okay, now that’s really it.

About Our Guest

Natalie Weaver

View Natalie Weaver's Profile

Unlock member only exclusive and support the show

Get Early Access, Content Exclusives, Monthly Lives and Ad-Free Listening

Become a Patron

Our Sponsor

The Hartford is a leading insurance provider that’s connecting people and technology for better employee benefits.
Learn more at www.thehartford.com/benefits.

Learn More

Have a story you want to share?

Fill out our contact form, and share as much as you're comfortable with.

Share Your Story
Envelope and Share your story card

Related Episodes

View All Episodes

Other Feelings & Co
Productions