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Minisode #5 - Stop Posting Sick Day Photos of Your Kids!

Diabetes Connections with Stacey Simms Type 1 Diabetes

Release Date: 01/30/2020

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Sharing photographs of our kids on social media has become second nature. But what happens when we post photos of our children in distress? Stacey says stop. No more photos of your child in the hospital, when they're feeling sick or in distress.

What about "keeping it real?" What about fundraising? Stacey argues that there are better ways to accomplish important goals around chronic conditions like diabetes than posting photos which, ultimately, exploit and embarrass our kids.

Links referred to in the episode can be found in the transcription below.

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Beta Transcription - please excuse grammar, spelling & punctuation

Stacey Simms 0:28
Welcome to a minisode of diabetes connections, one of our shorter episodes where I share some thoughts on one topic of diabetes management. I'm your host Stacey Simms, and my son was diagnosed 13 years ago just before he turned two.

Before I jump into this week's topic, which I really feel pretty strongly about. I want to give a thank you to Diabetes Forecast Magazine. We are in their January February issue as one of the top trending items for winter. It just cracked me up. When I opened, I get the magazine. So when I opened it, I laughed only because of the picture that they shared. I knew it was coming, they had asked to review it in the fall, but I didn't know that there would be a full picture. And I certainly didn't know it would be so funny. It's a woman, you know, with the book over her face, kind of like, Oh my god, I can't believe I'm reading this. And I can't believe what I'm reading.

But the funniest thing is that a lot of people thought that woman was me. It's not, but I can kind of see it. And it's so funny to think that even with social media and everything else, because this is basically a radio show, you probably have a picture in your head of what I look like, I always do that for people on the radio, and then you meet them and you're like, that's not what I thought they would look like at all. So if I get a chance to meet you, you can tell me what you thought I looked like. But anyway, thank you so much diabetes forecast. I really appreciate that. And thank you to everybody who's sharing the book. After you listen to the show today. You might say I really am the worst. But I really do feel very strongly about this.

So let's talk about it. This topic of sharing photographs, of children in the hospital, sick day photos. This is something that is very sensitive to a lot of people. But let's talk about why I truly think it is a bad idea to share what I'm going to call these photos of your child in distress. So for the purpose of this episode, let's say children in distress includes hospital photos, Sick day photos, a child upset about aspects of care, like getting a shot or an inset. Any photo that shows your child in a moment of distress or pain or hurt. We see these all the time on social media, a casual post of a tough night of lows, you know, and a sleeping child with a juice box next to them or something maybe a little stronger. You know, we're in the ER today couldn't keep fluids down and needed hydration. And then you see the child miserable in the hospital bed. We see these photos used by organizations and news outlets, Beyond Type 1, JDRF, Diabetes Daily. I am affiliated with a lot of these groups in terms of sharing content, right? You've seen - they'll post my stuff, I'll post their stuff. But I think it's important to call it when I see it. And every time I see it, I just cringe.

Now, I know what you're saying already, right? This is important. We need to show the real side of diabetes, right? We need to show more than the smiles when a kid gives himself a shot for the first time or you know, gets over the fear. If you listen to my longer show that airs on Tuesday, you know that every week we do a Tell me something good. And I very happily show pictures of those people who are featured each week, and I have been accused of being more positive and you know, too rosy sometimes. And, you know, but we're talking about realism. Right? Everybody says we need to show the hospital days they happen. We need to show diabetes isn't fair. Well, of course we do. Yes. Yes. We need to show that that is important. And I am all for realism. I promise it is not sunshine and unicorns and rainbows over here. But you know what we don't need to do to show that we do not need to exploit children. And that's what's happening here. These are kids who cannot give consent to be featured. They can't give consent. They're too young. And they have just as much right to their privacy as we do. How would you feel if someone took a photo of you at your most vulnerable, and posted it on Facebook?

Let's just back up and think about this. And I will get to when I think it can be done and how it can be done in a way that educates and informs and brings out emotion and still protects the child. But right now, let's say on these photos of distress, I did a little bit of research on this and there are a lot of articles about social media and photos. There's not a lot of research because this is Still so new. And when I see research, I mean real scientific published paper, that kind of research. But I did find some interesting articles. And I'll link all of these up in the show notes on the episode homepage. So here's an article from Dr. Kristy Goodwin, She's the author of “Raising Your Child in a Digital World.” She has a PhD in the impact of digital technology on children's learning. And she says that right now, sharing every part of our lives has been normalized by social media. But what happens really, when you dial it down is that it's a desire for a like, which is really a desire to feel connected, which she says is one of our biological drivers as a human, and it is needed to experience empathy. It does fulfill a purpose.

Dr. Goodwin says and here's a quote, “For many parents when their kids are seriously sick, they have lost all control and their world is literally spinning out of control. When parents go on social media, they have a sense of control over their life again, They can post things and choose exactly what aspects of their child's sickness that they want to post.”

Another article is from a pediatric hospitalist from St. Louis Children's Hospital, Dr. Shobha Bhaskar. She says, “We are all looking for support when our loved ones are not well, but when your child is running a fever or has a broken bone, please put down the camera step away from the screen. I'm sure if your child had a choice, they want to look their best to like you do. And your child would not appreciate a picture of them looking tired and rundown on the emergency room that we talk so much about patient privacy rules and rights. But what about the privacy rights of our little ones? Or do we think they just don't have any,” she says,
I'm going to take this one step further. Because I do think while we're on this topic of digital privacy, it's a good time to sneak in something else. In my Facebook group. I have a local Facebook group in the Charlotte area that I started, I don't know, maybe five or six years ago and when I wrote the rules and regulations for the group, the admin announcements. Here's what I wrote. “Please think twice about any pictures you post of your children. A picture of a pump inset on a naked toddler’s backside may be completely innocent, but there are creeps out there. This is a closed group, but there is no guarantee of privacy on any social media outlet. Please, please crop pictures like this very closely. So we can't tell what body part of it is for your child protection.”

And then I go on to say, “Same warning for posting pictures of your child in distress. This includes hospital pictures, pictures during illness, etc. You have our support and sympathy already, your child has his or her own right to privacy and may not appreciate being pictured online in such a manner. These pictures aren't banned. But take a moment to think about why you might want to post something like that.”

If you listen to carefully you might be saying Stacey what? They're not banned in your group but you just got on your high horse and told us how terrible they were? Well, they're not banned in my group, at least, and they are banned at some other groups. But here's why I felt like banning them outright would take away the conversation and the thinking, if you know that you're allowed to post them if you really need to, perhaps you'll stop and think about whether you want to a little bit more. And whenever anybody posts it, I usually send them a very gentle, private message, reiterating what I already talked about here in this episode, we support you, we love you, we're so sorry, Your child is hurting. But why are you posting that picture? Can you please think about your child's privacy? Sometimes I wait, because if the child's really ill, there's no reason for them to hear from me when they're in the hospital. Don't worry, I'm not direct messaging, a parent whose child is in a critical situation in the hospital and saying, could you please check your photo on Facebook? I mean, really, I'm not that cold. But I do if they're not in an emergency situation. I do do it right away, but it rarely happens in my group anymore.

What actually happens is we have conversations about why it's not a great idea, and what we're looking for, and what else we can do when someone's in the hospital. I mean, Benny had knee surgery a couple of months ago. And you bet I took pictures. We took funny pictures when they shaved his leg. I took a picture of his pump in the hospital gown. I took pictures of him and sent them to his grandmother, you know, going in thumbs up, that kind of stuff. I also took a picture of him coming out, because he was bundled up in so many blankets. He was so cold from the anesthesia coming out of it, he was fine. But that's not a picture he'd want me to post. But it was a picture he wanted to see later on. I knew he'd want to see how, you know, kind of funny he looked, but I knew he wouldn't want me to post it. So I'm not talking about not taking pictures, right. I mean, he had a terrible injury when he was about seven or eight years old, and we were in the hospital. And I took pictures. This was when we knew he was going to be okay when things had calmed down and he was stable. And I was sitting there with nothing to do feeling helpless. I took some pictures and sent them to my mom and my sister. And I showed them to Benny later on. I mean, they weren’t gruesome or anything. You know, if you're a longtime listener of the show, you may be thinking, I've never heard about this. And I'm not going to tell the whole story right now. You know, and I also it's a good time to point out that I don't share everything that's happened to Benny, I work hard to protect the privacy of my kids and my family in ways that make sense. So I have these pictures of him in the hospital at the time of that accident, but I didn't post them.

I did mention earlier, there are ways to do this. So how do you do it? Well, when he was in the hospital for his knee surgery, I posted a picture of I don't even know some of the hospital equipment, right, the IV bag, I posted something and I said, here's where you know, we're going in, everything's good. I'll keep you posted. That kind of stuff. And I've posted pictures of him drinking a juice box, you know, he's low and you can kind of see in his face he's look you know what to look for. Rather than a more dramatic picture I've posted on I use it to my presentations. Several years ago, I took a picture of his bedside table, which was just it was one of those horrible nights it was covered with juice boxes and test strips and, you know, inset changes, it looked like a war zone. And that conveys the difficulty of type one diabetes in a very similar way.

I posted this on my personal Facebook page, just to say, Hey, I'm going to be talking about this topic. And I was curious what other people in the community thought, and I got so much feedback. One of the pieces of feedback I got, which I thought was very, very interesting. And by the way, the vast majority of adults with type one that I heard from said, Please, please, please tell parents not to post pictures of their children. It really is something that I know people feel very strongly about. But I did hear from advocates who said, we need to get our cause across. We need to push we need to fundraise. I've two responses to them. One is we've been fundraising for JDRF and some other causes for 13 years. We have raised 10s of Thousands of dollars, we might be close to $100,000. If I sat down and added it all up, we have never posted a picture of Benny in distress. Has he been in distress? You bet. have I written about it? Have I talked about it? Sure. But we have found creative ways to show what goes on with diabetes. And I've never felt like I've exploited him to fundraise. And I know many, many other people who have raised a lot more money than me, who have never posted a picture of their child.

I also heard from people about what the DKA campaign. Now, if you're not familiar, there is a campaign and it's a great campaign to diagnose Type One Diabetes sooner. There are so many cases of children and adults diagnosed while they're already in DKA, while their lives are in danger. The most dangerous time to be type one diabetic is before anybody knows that you are and the thinking was, you know, we need to show the faces of this. We need to show what can happen so that laws can change. And as I'm speaking about this, I'm also thinking about the insulin for all campaign and People who are dying because they're rationing insulin, but I'm going to give you the example of Reegan Oxendine and this is a little girl here in North Carolina. She was a toddler. She died. She had type one diabetes, it was misdiagnosed again and again. Finally she was hospitalized but it was too late. And her story has been told several times, I'll link it up in the show notes. Previously Healthy was a wonderful bit of journalism, photojournalism done by the folks at Beyond Type 1, but I bring up Reegan because it actually illustrates the point I'm trying to make that we can affect change and we can get the point across even if in this case, it is a terrible point, without photos that are exploitive.

If you're familiar at all with Reegan’s story, what may come to mind is the most impactful picture in my opinion. And it's not her in the hospital, and it's not her looking ill and in distress. It's a devastating photo. It's just her mother's hands, holding Reegan's tiny little shoes. Her Shoes fit in her mother's hands. I'll post this picture. It's incredibly powerful. It's disturbing in its own way. But it is not exploitive at all. And it is a photo that really affected change. The law changed in North Carolina. Now is it as a strong laws everybody wanted and we've done episodes on this, I will link up more information on the episode homepage. As you can see exactly what happened. It's frankly, more of a recommendation for pediatricians but got the awareness out it got legislators talking about it. There are other cases of children and adults who have died. And they have been pictured online in many different ways. I am not going to judge those parents. You know, frankly, that takes us down a different road. I'm not sure how I feel about that. And it is certainly not for me to judge how those parents how those families react. However, that's not exactly what I'm talking about here. And I think we all know that I'm talking about the case of your child who's throwing up, run of the mill sick, you know, maybe has ketones that you're treating, who just looks awful. And you know, you grab the camera, because isn't that what we do?

It's so interesting to me how much things have changed. I mean, when Benny was diagnosed in 2006, nobody had a camera because it wasn't on our phones. Right? It never occurred to us to take pictures of Benny in the hospital with Type One Diabetes, being diagnosed because who would bring a camera to something like that? And you know what, I wish I had those pictures. Only because there were so many funny and touching and wonderful and and sad moments that I remember, but I'd like to see I'd like to see little baby Benny ripping off all the stuff that was on him. We had such a hard time keeping anything on him. He's like little baby Hulk pulling off the sensors and things like that. I'd like to see him maybe getting his first shot. He was so brave. I'd like to see his face. Sister hugging him, you know all the things that are in my head, but that I don't have a photo of. And it's because times have changed so much that we don't think about photos.

I have thousands of pictures on my phone, right? I don't even know what they're up anymore. We just take them in a screenshot and I save things and we don't even think about pictures anymore. But I'm telling you, these are pictures that we need to think about. I also think it's important to keep in mind and we all know this, but we don't really think about it when we're posting the internet is forever. And if you've posted a picture of your child in distress, child might be five years old, that photo will live forever. Your child will probably find that photo at some point in their life. So before you post another photo, just stop and think for one moment. I don't care if it's a closed Facebook group. I don't care if it's a private Facebook group. That's a bunch of bull. Nothing is private. In social media. The minute you hit post, somebody else can screenshot Somebody else can save it, somebody else can forward it, you have no idea where it's going, right? So just take a moment to think, why am I doing this? What do I need right now? If it's support and sympathy, I promise it's out there. If it's showing the real side of diabetes, I promise there's a way to show that without exploiting your child. And if the next time you post you're thinking, well, but think carefully, what comes after that. But what is stopping you? Is there a little bit of doubt in the back of your mind? If there is, you know, which other 10 minutes Think it over? You can't take it back once it's out there. I promise. There was love and support and sympathy and understanding and empathy and fundraising and awareness without posting these kinds of pictures.

Agree? Disagree? I know a lot of people feel very strongly about this. And I know when this gets posted, most people aren't going to listen to all the way to the end, they will see the headline and they will tell me I'm a terrible person. So keep in mind, I am the world's worst diabetes mom. You know, what do you think I really would love to hear from you. All kidding aside, we will put this in the Facebook group. I'll be talking about it on social media when the episode airs. And of course, I'm Stacey at diabetes connections.com. You can find that a lot more about the show about the book. And about this episode on the website. Of course there is a transcription. all the episodes beginning this year, have that transcription on the episode home page.

All right, back to our regular full length episodes every Tuesday, and then these minisodes on Thursday. I'm Stacey Simms. I will see you back here next week. And until then, be kind to yourself.

Announcer:
Diabetes Connections is a production of Stacey Sims media. All rights reserved. All wrongs avenged.

Transcribed by https://otter.ai