Facebook is the mecca of oversharing, and everyone knows the parents love to talk about their kids, but what ultimately inspired me to make today's episode is that there have been several times in my life where I've seen parents post detailed information about their child's medical conditions and struggles with low vision, where I went up to my mom and said, “Thank God you didn't do that to me.” Thank you for not splashing my albinism all over Facebook, Instagram, and YouTube. I am so grateful that I had the opportunity to share my own story when I was ready, not when I was five, and I want to talk more about that today. My goal here is not to call anyone out or say that it's always bad to talk about albinism, but rather to share my perspective on how oversharing on social media can have unintended consequnces. And if you're a parent who thinks I'm totally off, that your campaign to raise awareness can do absolutely no wrong. I would encourage you to listen anyway because I'm a 20 year old with albinism, and one day your kid will be my age. They may think the same way I do, so stay tuned.
*Intro Music*
Hello everyone! Welcome back to another episode of Legally Blonde & Blind. I am so excited and honestly a little nervous to be talking about social media today because even though it is such a huge part of our lives, I think it is very easy to not be intentional about it, to gloss over what you're posting and why, and when children are in the mix, it is critical that we think about their safety, their consent, and their right to privacy as they grow up. And when you post about a child's disability, which is often a deeply complex and personal part of one's identity, you need to think about what types of messages you're sending. I think there is a bit of a disconnect here because many of these parents, specifically in the blind community, are not themselves blind, visually impaired or albino, meaning they don't have that lived experience. In addition to that, they didn't have the experience of growing up with social media. Their mothers didn't have an opportunity to take pictures of them at their doctor's appointments. So my goal today is to bridge that gap and explain the consequences of posting such a personal aspect of a child's life for all the internet to see.
My first thought when I sat down to write this episode was “why do parents share all this information online in the first place?” Disclosing a disability is a lot more intense than sending a Christmas card or sharing your most recent vacation photos on Facebook. And obviously I'm not a parent, so I don't really understand what it's like to be in that position. But the consensus I got from doing research was that it's about making connections, finding other people who get the unique challenges of raising a child with a disability. A survey from the Pew Research Center found that 80% of mothers and 65% of fathers use social media to receive emotional support. The survey also found that 83% of mothers and 74% of fathers use social media platforms to get useful information regarding parenting. So it makes sense that a family in a small town with the only blind kid in the school district would want to find additional support and resources.
Many parents also use social media to update family and friends during emergency medical events. I mean, it makes a lot more sense to write one two paragraph Facebook post than to tell the story to your great-aunt, your neighbor, the soccer coach over and over again. And specifically within the disability realm, there are so many parents who want to raise awareness and inspire others through their child's story. We'll talk later about why I think this mindset is flawed, but ultimately it's coming from a good place. They want to make people more accepting. They want their child to grow up in a better world.
And finally, I want to talk about the financial incentives. Now, I think the vast majority of parents are coming from a good place, and they don't have any ulterior motives, but I still think it's important to understand the popularity and the sheer size of the family vlogging industry. Posts involving children generally tend to do very well. So if you're looking for anything from attention to brand sponsorships and ad revenue, that's a good way to get it. And some of these family logging channels, or channels primarily featuring the children of the family unit, make a lot of money. Take for example, the Ace family. They have 18.7 million subscribers on YouTube right now, and it's estimated that they make $17,500 a day off their content. And if you look on YouTube, you will find hundreds of successful family vlogging channels that have enough subscribers to fill several stadiums. Among these YouTube channels, there are quite a few that focus on the challenges of raising a child with a disability. Take for example, Raising Autumn, a channel that primarily follows a teenage girl with Down syndrome and autism named Autumn. Though, I don't know if follow is necessarily the best word to describe what's going on. I'd say shoving the camera in her face is more accurate. Anyway, this family has 355K followers on TikTok and over 102k subscribers on YouTube. Some of their most popular videos feature disturbing footage of Autumn having meltdowns or going through medical procedures. There's videos talking about her period, Autumn going on birth control, needing to lose weight. All of this is extremely personal information, and you know that if she didn't have autism and Down syndrome that this wouldn't be talked about. I mean, this woman has other children who are presumably not disabled and you're not seeing their emotional breakdowns or doctor's appointments on social media. Even though most parents don't have this level of following on social media. I still think it's important to understand how popular and profitable this type of content can be, and I think it's important to give concrete examples here because it might not seem like a huge deal if it's your child. But I bet you will be shocked at how much information you can find about kids like Autumn. I mean, I should know about what type of birth control a stranger is on and why unless they decide to tell me. So throughout the rest of this episode, I'll be talking about general trends that I've noticed on Facebook and Instagram, but obviously I don't want to call out any particular parents. Though if anything's not clear, I recommend going to this channel because it is basically a textbook on why it's problematic to post so much about your child's disability.
The first thing that parents should think about before they post anything personal about their child, especially relating to their health or ability status, is that consent can be very tricky at such a young age. I mean, even if they say it's okay to take their picture, Do they understand where that picture is going? Do they know how many people will see it? If you're talking about their albinism, do they know how many people are going to learn about that and how permanent that information will be? The phrase “what you post online stays there forever” is such a cliche, and I know that, but as someone who grew up with social media, I truly think that takes time to sink in. When you're five or six, you're not sitting there thinking, “What are employers going to see when they search? What are they going to think of my mom's Instagram?” And when it comes to disclosing disability in job applications, college admissions, or really any other facet of life, it is a deeply complex and personal decision. And when you as a parent share all this information publicly about your five year old, you're removing that choice for them.
That leads me to my next point on why consent is tricky, and that is because most children truly do not understand what disability is. Now what I mean by that is when I was little, I knew what the words albinism and low vision meant. But I did not really understand society's attitudes towards my disability and how that would impact my life. When I was little, I was pretty oblivious to how I was different from others. I remember it was such a shock for me. I never realized how close I looked at phones until a friend took a picture of me when I was in, I think like the fifth or sixth grade–it was relatively late in life to realize this, but I was mortified. There was a phase in my life where I wanted as few people as possible to know about my albinism, and even if your five year old says, it's totally fine. They may not feel the same way when they're 12, 13, or 14. As someone with albinism, accepting and embracing your identity can be a very long journey. I feel like plastering it on the internet at such a young age only complicates the process. This is a bit of a hot take of mine, but I believe regardless of how detailed or frequent your posts are, you have to acknowledge that to some degree you are limiting your child's ability to share their own story and disclose their disability on their own terms.
My next point is that I think pretty much every kid wants to please their parents and the adults in their life. So if they see their families starting these awareness campaigns, making albinism t-shirts, organizing five Ks, they may not feel like they have the ability to say no. And even if they do, the adults in their life may very well reply, “Oh, so you don't wanna raise money for NOAH, You don't wanna raise awareness for albinism.” When in reality they just may not feel comfortable being the center of attention for their medical condition, they may not want to be the disability poster child. I made the choice to start this podcast. I talk about my blindness all the time because I want to, and I enjoy sharing my perspective, but the truth is not everyone with albinism has to be an ambassador. .
And my final issue with consent, and this is, this is a really sad one to talk about, but it is the reality is the inability to understand the safety risk. I mean, take for example, Allison Irons, the creator of My Kiwi Family, who removed all videos of her children after she realized that they were being downloaded and reposted on Pedophilic websites. She noticed that they were being added to suspicious playlists of children wearing swimsuits or diapers. She noticed that her proportion of male viewers dropped from 40 to 17% after she disabled the ability for her videos to be downloaded. I mean, this can happen to adults too, right? Their photos can be stolen and uploaded onto other websites, but I feel like when you post about children, you are exposing them to an especially sick group of people who are going to exploit your ignorance and their vulnerability. And naturally a child in elementary school isn't going to be able to consent to or understand these harsh realities.
So to recap, my main issues surrounding consent are that it's very difficult for children, or at least it was for me, to understand social media, the ramifications of having a disability and the safety risks that come with being online and having a public presence. I think parents also need to take into account the relationship with their children and how part of this enthusiasm might be from them wanting to please you. Now, I'm sure that there's some people who might think “Sure these are risks. These are things we need to take into consideration, but we're raising awareness for albinism. Doesn't that outweigh any potential cons?” And that leads me to my next question, which is, is raising awareness always a good thing? I mean, the more people know about albinism, the better, but awareness on its own is very shallow. That's not to say education isn't important, but it's only one piece of the puzzle, and you have to be sure that you're sending the right message.
With that being said, I now want to talk about some common themes that I notice when parents talk about disability online and why I think they can be problematic. First, we have to revisit inspiration porn, which if you haven't watched my previous episodes, I'll give you a quick definition. It's the objectification of disabled people as inspirational icons that serves the purpose of making the consumers of the content, people without disabilities, feel good. It's the idea that disabled people working, playing or simply getting out of bed is somehow inspirational. Think like the memes where it's a picture of someone in a wheelchair doing a race with the caption “What's your excuse?” Or a news article about someone asking a disabled person to prom. I don't want to stay on this topic too long because I've made other episodes discussing this, but I think it's important to evaluate “What are my goals here? How am I trying to inspire people?” Is it just with pictures of your child with albinism living their daily life? If so, you may not be sending the message you think. Because if it isn't clear already, the main problem with content that fits this category of inspiration porn is that it perpetuates the idea that disability is some kind of tragedy and that it's a miracle we aren't completely miserable. As an adult with albinism, I would want people, if at all, to be inspired by the things I do, my passions, what I've worked for, and not by my mom's Facebook. I mean, I love a good prom pick, but it's not inspirational.
Next is exotification, which is another theme I have talked about in previous episodes. It's this idea that albino people are rare beauties that should be gawked at. As I've mentioned before, the line between complimenting and objectifying someone with albinism can be very, very thin. But some of the things that make me uncomfortable are when parents post closeups of their kids' eyes, especially when it's with flash photography, which is just terrible for people with light sensitivity. If you take one thing away from this episode, if you cannot resist posting pictures of your kid, if I have failed to convince you, please don't do it with flash photography. I also get a bit of a weird vibe when parents only do photo shoots with the albino child. I don't know what it's like to have brothers or sisters, but I would be pretty mad if I were the pigmented sibling and I didn't get my own whole photo shoot. Like, Sorry, Timmy, you're too tan. I'm sure every parent thinks their child is beautiful, but I do believe that there is a point where it goes too far, where it starts becoming excessive. I actually wrote down in my notes that if your comment section starts looking like it belongs on a dog Instagram account, you have gone too far.
I've also seen several posts online that amplify our differences beyond our physical appearance, mainly through showing pictures of us looking closely at our schoolwork or using assistive technology. Even now, if someone were to take a picture of me while I was doing these things, it would make me extremely uncomfortable. Why should I be put on display? Would they make such a big deal if a sighted person were reading a book? And for younger folks, it might expose parts of their albinism that they're not ready to embrace yet, that they're still insecure about. I mean, in particular, looking closely at things always made me super insecure. Even to this day, there will be times where I'm in a new restaurant or a coffee shop and I wonder if the server or barista is going to think I'm weird because I'm looking closely at the screen. One post that made me feel particularly compelled to make this episode was–I saw a few months ago a picture of a child looking closely at a book with the caption, “What are three things you notice?” And I just, I just found that really frustrating. Honestly. I mean, I felt exposed and I wasn't even in the picture. I can only imagine how I would've felt if that were me when I was 12. I mean, I get comments about how close I look at things sometimes that are like “you should get glasses.” And it's just so annoying. I mean, can't disabled people go about their lives in the way that works best for them? Does everything we have to do be dissected and analyzed? I think it also ties into that inspiration porn component when people think that looking closely at things is a burden or that it somehow makes you a warrior. My attitude towards it at this point is it's a part of how I see and interact with the world. Don't pity me for it, and if you are going to pity me for it, at least get me a gift card for a chiropractor.
I mentioned this before, but not every single person with albinism needs to be an ambassador or needs to be a social media influencer who advocates for acceptance. There are plenty of people who don't want their disability to be front and center. That's completely okay. I'm sure that there are some blind people out there who would look at my podcast or my head shots in my neon pink pantsuit with my white cane as extra. That's totally fine. It's everyone's prerogative. The issue with these extensive Instagram accounts or blogs is that they promote the idea that people of albinism are open books. That you can go up to them and ask any questions you want about their hair or their eyes. I mean, that's the whole reason I made an FAQ page. It's because people are quite nosy, but no one is entitled to know about your medical conditions, your vision, or the accommodations you receive. Truly, it is none of their business. And I think parents sharing all this information about their young children sends the message that blindness is an open book, which for many people it is not.
And my final problem with these awareness campaigns is that it puts parents at the forefront. As a pigmented parent, you are not the best advocate for people with albinism. I think parents should have a voice and should share their stories, but they shouldn't dominate the conversation. And I think in many albinism groups, they do. What I think happens then is it becomes about the parents' challenges or their struggles, which are of course valid, but it's only part of the story. It's hard enough for blind people to get those around them to listen and not immediately turn towards their parents or sighted peers. My fear is that when parents take up so much space, they send the message that we need someone to speak for us, that we can't share our own stories.
So what should you do?
Like I said at the beginning of this episode, I am not a parenting expert, and I'm not trying to imply that posting about albinism is always bad. Though I do have some advice. Before you share anything about your child, ask yourself, “does this promote dignity and respect? If I were them, would I want future employers, romantic partners, friends, family to know this about me?” I found this blog called Diary of a Mom, run by a woman named Jess Wilson, and I really like her approach. She uses pseudonyms for her daughters and she refuses to discuss overly personal information like puberty, for example. Her test is, “if I were 12, would I want my mom sharing this story with everyone I know?” I want to share a really powerful quote of hers. “My desire to talk about my challenges, my fears, my own insecurities about the process cannot ever trump my daughter's right to privacy. Helping to guide others cannot come at the cost of her dignity.” I also think that if we had more support groups or resources for parents of newly diagnosed children with disabilities, you would see less of this online exposure.
If you're a parent listening to this. First off, thank you so much for listening to my perspective and hearing me rant for 20 minutes. I know how easy it can be to ignore criticism online and dismiss it as trolling or haters. I truly appreciate it from the bottom of my heart, but I would sit with these questions and start to evaluate your intentions.
Talk to your kids, see how they feel when you share their albinism. Does it make them uncomfortable when strangers ask questions? Do they really like taking pictures? Are there some things about albinism that they just would rather not share? I think having these conversations is a great place to start and it will help build those self-advocacy skills.
If you're doing a fundraiser and they want to get involved, maybe have them write a message or a short video–if they want to, don't pressure them. It's a great way to have their voice be heard and not just yours. Show them what you're about to post and let them know they have veto power. If you're experiencing some kind of challenge or struggle, think about reaching out to a family member or a close friend before sharing online. I know NOAH, for example, has some resources where they'll pair newly diagnosed parents with those who have a bit more experience. And finally, keep in mind that your child's attitudes towards albinism are likely going to change as they get older. Believe me, the teenage years are exceptionally rough. They may not care now, but that will probably change once they're 12 or 13. . So keep the conversation open and let them know that they can retire the “Albinism is Beautiful” T-shirt if they'd like.
Thank you all for listening to today's episode. If there's one takeaway here, it's that everyone, not just parents, should be intentional about how they use social media. What can I say? I have my personal Instagram, the podcast Instagram and my dog page @gtownpups. So I think about social media a lot more than I used to. Two completely unrelated updates about my life. First, I did get another email from the Guide Dog Foundation saying that the wait time for a match is longer than previously anticipated, which is very upsetting, but I know one day my Labrador will come. I also tried out a tandem bike for the first time. I rode 50 miles as a part of Georgetown's Bell Ringer bike race. It was to raise money for cancer. I was so happy I put myself out there and tried something new. I remember when I first heard about the race, I was disappointed because I was like, “Oh, there's no way I can do it.” But then I thought to myself, “Why not?” There are tons of amazing blind athletes out there, and maybe one day I will have someone on the show. Though I will say it is quite a strange experience to ride a bike and know that it is okay to close your eyes. It's kind of liberating.
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