Under the Influence (with Jo Piazza) - Is a Sick Child Content？ With Fortesa Latifi

00:00:00.000 Hi! After we did our last episode that mentioned medical influencers, I got so many messages

00:00:17.200 from all of you. It turns out that I am not the only one who gets creeped out when I'm

00:00:23.720 served pictures and videos of other people's sick kids in the hospital. The discomfort is very real.

00:00:33.360 Now, funnily enough, or not funny, just weirdly enough, since I released that episode into the

00:00:40.980 world, I'm now getting served even more of that kind of content. Because clearly, Instagram was

00:00:48.300 listening to me, but the robots are really dumb and they seem to think that I want more of those 0.94

00:00:55.340 pictures and videos and not less of them. I really need to talk through my feelings 0.95

00:01:03.920 about all of this with someone who is not my husband because he doesn't get any of this and

00:01:10.740 frankly, he's sick of me showing him pictures of sad, frail children hooked up to wires who had

00:01:18.440 their picture taken of them when they are passed out in a hospital bed without giving their consent.

00:01:24.040 He just keeps telling me to unfollow, and I tell him, I did unfollow, but they keep coming back.

00:01:31.860 So, I'm going to have on someone who actually wants to talk to me.

00:01:36.380 That is not Nick Astor, clearly. No.

00:01:39.260 It is the journalist Fortessa Latifi. She is a kick-ass reporter who is one of the few who 0.99

00:01:47.000 cover the influencer world seriously and smartly for places like The Washington Post and Teen 0.99

00:01:53.540 Vogue. Her recent piece in The Washington Post examined the phenomenon of medical influencers

00:01:59.520 and asked the very important question, why can't millions of people look away from these pictures

00:02:06.420 being posted of kids during their most vulnerable experiences. Fortessa is a goddamn gem of a human 0.99

00:02:15.560 and you are going to be as tickled by her as I am. Hi, my name is Fortessa Latifi. I am a reporter 0.99

00:02:24.240 at Teen Vogue and lots of other places and I write a lot about mom influencer culture.

00:02:31.500 I do have to tell you that I'm fangirling a little bit because you've done so many great stories on this topic that I've been covering for the past three years. And I really, really loved the piece that you did on medical influencers.

00:02:50.520 first yeah yeah and so this is something that we touched on briefly when i did an episode on

00:02:59.760 munchausen by internet but it's something that you you recently did a real deep dive into and so

00:03:09.120 i'd love to talk to you more about what is this world of medical influencing what is happening

00:03:18.200 here ever. Yeah. Oh my gosh. It's something I could talk about forever. It is this very strange

00:03:24.180 corner of TikTok and also Instagram and YouTube where mostly mothers, although sometimes fathers,

00:03:32.320 but like 95% mothers of disabled and chronically ill children share their parenthood journeys and

00:03:40.040 how that's different than being the parent of an ill-bodied child. But I think the thing that

00:03:45.840 really fascinates me is just the like total lack of privacy for the kids whose medical needs are

00:03:52.400 being shared in these like sometimes really graphic ways. Yeah. Yeah. And I see so much of

00:03:59.160 this. I see I see a lot of versions of it in my own feed. And we talked a little bit about this

00:04:05.680 before, but I'll see anything from a more run of the mill influencer, a mom influencer who doesn't

00:04:13.520 usually talk about illness who has had an illness or a hospital visit happen in their family and

00:04:21.200 then they start posting about it and all of a sudden you're seeing these pictures of kids

00:04:27.120 hooked up to machines and hearing really graphic details about their medical treatments and things

00:04:36.580 that i wouldn't want to talk about with anyone i mean i like thank god and i count myself lucky

00:04:45.260 every day that i have had three children and we haven't had any major health issues like

00:04:52.180 knock on all the wood right yeah um we did we had we had one one scare where we had um

00:05:00.400 bump a really really bad bump on the head and had to go to the ER and he was intubated and

00:05:10.180 knocked out with I know I know and knocked out with painkillers which meant he didn't wake up

00:05:16.560 forever and I was I was just convinced that like the world was like the world as I knew it was

00:05:22.100 going. Sure. I didn't, in that moment, I didn't tell anybody what was, what was happening. I

00:05:32.440 didn't even reach out to my, my mother at the, at that point. My husband knew our friends who

00:05:37.960 had been with us knew. I eventually told my best friend who came down from New York and,

00:05:43.900 and stayed with me in the hospital once he was stabilized. But the last thought in my head was

00:05:51.860 oh my gosh, let me share this moment with thousands, if not hundreds of thousands,

00:05:58.380 millions of strangers. I don't understand where that impulse comes from. So my big question for

00:06:05.040 you to start is you've talked to a lot of people who do share this content, who are hashtag

00:06:10.320 medical influencers. What is the motivation behind this? Oh, yeah. I mean, this is something that

00:06:19.360 when I was writing about this, I was really fascinated to talk to them because I kind of

00:06:24.340 have had the same experience where I've seen this content on my feed. And it's just like,

00:06:28.720 man, I feel really weird that I know like every single medication that this child tried to take

00:06:34.320 today or that, you know, the doctors are trying to handle their symptoms. And it's like, it's just

00:06:38.700 so strange. And it just like expands upon like all of the issues that we have in the influencer

00:06:44.960 world with privacy already but when I talk to the moms who are part of the medical mom world

00:06:51.680 a lot of it for them came down to wanting to raise awareness about what it's like to

00:06:58.820 not only have a sick child but to just like how the pressures of parenthood are changed with a

00:07:06.760 sick child um and I think you can go from there and kind of say like well is it what does awareness

00:07:12.660 really do or is awareness worth privacy but that is like their stated intent who am i to question

00:07:19.040 anyone and maybe that is indeed the case i i mean i also wonder if you know it is to grow followers

00:07:29.540 and and to get attention but it really it could be to raise awareness and a lot of the folks that

00:07:36.320 you talked to did have children with very, very rare diseases. You tell the story of a child

00:07:45.840 named Bella. Can you walk me through Bella's story? Yeah. So Bella is one of the kids who has

00:07:54.280 like the most followers in the medical mom slash medical child world. So she has a rare form of 0.96

00:08:00.560 dwarfism bowel disease and autoimmune disease and her mom kyla has been sharing updates on

00:08:08.240 her medical situation to over i think now they probably have more than six million followers 0.99

00:08:14.340 and that has to do with bella's hospital stays and ambulance rides and get ready with us for

00:08:19.920 our intravenous medication nightly and that kind of thing um and so i talked to kyla and i was like

00:08:27.280 what is what is the vibe here exactly um and it is kind of interesting because kyla and bella live

00:08:33.620 in canada so they don't have access to the tiktok creator fund so they're not getting paid like

00:08:38.900 solely off of views or anything like you can be in the united states um but they do have like

00:08:44.700 branded partnerships and they do have merchandise that features like a logo that has bella's name

00:08:51.260 on it but what kind of branded partnerships can you do with a sick child account well so they're

00:08:59.740 canadian so one of their big um partnerships was with the national hockey league and it was just

00:09:06.460 like you know we love hockey or something like that um so yeah i mean i think that's also the

00:09:13.560 weird thing about social media now is like you can literally brand anything like and you can be given

00:09:19.640 branded partnerships for anything like hockey okay let's do it done and look i don't i don't

00:09:27.140 want to begrudge anyone making money however they can this world is hard we live in a hard world

00:09:34.220 yeah it's difficult for mothers to support themselves and at least they live in canada

00:09:40.220 where there's halfway decent health care, but having a child with a rare condition is no joke

00:09:49.640 for how much money you likely need to take care of them, right? Yeah, I mean, it's incredibly

00:09:58.940 expensive to be sick, even in a country where you actually have, like, you know, nationalized

00:10:05.560 health insurance system um but yeah it's it's incredibly expensive and they have to travel

00:10:11.580 often to get treatment and that's the thing that I wanted to like really stress in this story is 1.00

00:10:17.900 that like I'm not like looking at these women like oh my god what sickos they're like capitalizing 0.73

00:10:24.040 off their sick kids but like I think that if you've never been in the health care system and 1.00

00:10:31.780 been kind of like at its mercy or like at the mercy of a body that isn't doing what you want

00:10:37.600 it to do, then it's hard to understand like the pressures that come with that. And I think that's

00:10:43.060 really important what you said about how it is hard for women to make money under the best of

00:10:48.540 circumstances, let alone with a child who needs this much attention and this much care. So I do

00:10:54.400 think it's complicated, but I just like, I just have like a gut level reaction to the

00:11:01.780 to like the photos of the kids like slumped over in a hospital bed or whatever and like maybe that's

00:11:08.700 like my own bias because I have been chronically ill for quite a while I had cancer in my early

00:11:15.620 20s and I like often think about like what would I have done if my mom was like taking pictures of

00:11:22.540 me like perked out and like putting them on Facebook you know yeah yeah well that's that's

00:11:30.400 the issue here it's the consent issue and right i don't think that a child can consent to to being

00:11:39.880 put on social media under the best of circumstances and so when you look at the worst case scenario

00:11:46.700 where this child is unconscious often um you if you go through hashtag medical moms on piktok

00:11:56.260 or on instagram you see heartbreaking images you see and you wrote about this in the story

00:12:03.560 a child with cystic fibrosis who can't breathe a premature baby getting their tracheotomy changed

00:12:10.240 a mom dancing to a trending song while explaining her child's disability and

00:12:18.020 these kids they're not saying yes please post me or yes please raise awareness of my rare disease

00:12:28.200 and it's their bodies that's what it boils down to for me it is their bodies that this does

00:12:38.060 generate a lot of attention when i see just a run-of-the-mill mom influencer and i saw one just

00:12:46.020 this week post about her child's hospitalization they got a hundred times more engagement

00:12:54.060 from that sick kid post than they do from every other post yeah yeah so that's not surprising

00:13:03.960 have you seen that have you seen that these these and it's most it's often women there are some dads

00:13:10.620 but it is often women and often mothers have you seen that they can get in the millions of followers

00:13:16.420 by posting about this yeah i mean i don't it's definitely true they get a lot of engagement i

00:13:23.400 mean even like you said like um influencers with like able-bodied children who have like medical

00:13:29.840 episodes or something like i'm just thinking of are you aware of like the labrant family i'm sure

00:13:34.660 no i'm not oh my god oh here is a rabbit hole for you um so it's cole and savannah are like the mom

00:13:46.280 and the dad and savannah has a daughter named everly who she had when she was like 19 and then

00:13:52.340 um she got married to cole when she was like i think like 23 or something and now they have like

00:14:00.080 three or four children together and they're raising everly together um but they are just

00:14:06.420 like this like they just moved to tennessee because like influencers have to do that

00:14:10.240 you know like it's just it just has to they're like you know the perfect like blonde hair blue

00:14:16.540 eyed family like love god like love like traditional gender roles like etc etc whatever

00:14:22.380 and um one of their children zealand who is their son who i think is a toddler um he had some kind of

00:14:32.660 um he had some kind of back up back up and say it again because i accidentally clicked on one

00:14:38.280 of their videos and there was some jesus music planks oh yeah there's gonna be lots of jesus

00:14:42.740 music wait i mean are you on tiktok yeah okay did you come across that um everly just put out her

00:14:50.620 first single and it's like it's like you have to listen to it after this it's like basically just

00:14:56.840 like a mashup of like taylor swift song titles but like set to like country kind of i don't know

00:15:03.280 it's really it's really catchy honestly okay i'm gonna stop you for one second we're gonna take a

00:15:08.920 quick break because as we said everyone needs branded content and so we're going to take a

00:15:14.620 break for the for the advertisers which is not the canadian national hockey league

00:15:18.500 and when we get back you are going to tell me all about the liberate family

00:15:24.120 all right so we are back and you are about to take me down one of your favorite rabbit holes

00:15:38.180 which is now going to be one of all of our favorite rabbit holes oh yeah yeah so so yeah

00:15:44.580 the labrants they have like millions of followers on instagram on tiktok they're like this huge

00:15:51.240 family vlogging family but their son i think like about a year and a half ago had a seizure

00:15:57.360 and he was a toddler it was obviously very scary i'm sure for the parents and for the child

00:16:03.700 um but everyone online was kind of like amazed both like in good and bad ways about the content

00:16:12.300 that they made around the child's seizure so they like took photos of the mom getting him like in

00:16:19.320 the ambulance and you know in the hospital and showed him like I mean it was terrible like he's

00:16:26.420 like so pink and sad and just in this little diaper and it's just like it's just terrible and

00:16:32.120 and then they had you know our boy has his first surgery on YouTube and update on our sudden seizure

00:16:37.880 And why is this happening to Zeland?

00:16:40.480 And it's just like, whoa.

00:16:41.700 And it's just like he's an able-bodied child as far as we know and is still like being made into content like this.

00:16:49.300 That's what I'm getting at, that we're saying this is a child being made into content definitively.

00:17:00.460 This is a child seizure.

00:17:01.980 I don't want to mince words around it.

00:17:03.720 It's a child seizure being made into content.

00:17:07.880 right um i'm gonna hold on i want to look this up i want to look this up but also as i'm as i'm

00:17:14.780 looking this up who thinks that that's i guess that's the question who thinks to capture these

00:17:21.480 moments because when i had the head injury with my kid my i first off i couldn't breathe and i'm

00:17:31.300 desperately trying to get them into a vehicle to get them across the bridge to get to the hospital

00:17:37.060 which is thank god five minutes from our house and then i was shaking physically shaking and

00:17:43.100 ready to vomit in the emergency room at no point did i reach for my phone at no point in fact i

00:17:50.760 missed so many calls from my husband because i didn't i didn't think that i should i should

00:17:59.200 capture this so who thinks my kid is having a seizure let me take a video of them well i think

00:18:06.140 when your job is to make content out of your life like everything it's like Nora Ephron said like

00:18:12.020 everything is copy but like everything is content you know oh she I you know I use that Nora Ephron

00:18:19.660 quote all the time because I love her and obviously she is yeah one of my idols and I do turn a lot

00:18:27.540 of things in in my life to copy in fact my my husband got so pissed off at me today because I

00:18:33.140 wrote in Substack about how I think it's gross and totally unsexy when he refers to me as mommy

00:18:39.340 around our children. I'm just like, oh, God, you make my skin cross. And he sent a nasty note. He

00:18:44.220 was like, well, you know, you could tell me before you do this. And I snapped back. Everything is

00:18:48.340 content, bitch. Shut up. You married a writer. But you know what? Then he was like, I was kind 1.00

00:18:55.360 kidding because he knew he knows who he married he knows yeah of course but it's not i would say

00:19:03.240 that if the great nora efron were still alive she would say you know what some things aren't content

00:19:09.060 some things are not content in the moment maybe as a writer you write about this many years later

00:19:17.120 as joe radian famously did about her her daughter and her husband that book that book but is is this

00:19:27.040 child's seizure content in the moment to be broadcast i i do not i don't believe so i really

00:19:35.460 i really don't i'm looking at this at this video now and it's terrifying he stops really sad he

00:19:42.700 stops breathing he goes lifeless they've got all these and he's he's in a little he's in a diaper

00:19:48.980 and i know he's so little and sad he's so little and sad and i our only other big hospital stay

00:19:56.980 was when my daughter was five weeks old and she had to go to the hospital with rsv and at the time

00:20:04.580 i had no no idea that rsv was a thing i was like this is a virus like it's pre-covid so i'm like

00:20:11.180 why are we going to the hospital for a cold i have so tiny and connected to all of these big

00:20:18.600 machines and wires and we have we actually have a picture that's wonderful of her that we do trot

00:20:24.340 out now four years after the fact where she looks like she's like scowling at us through the wires

00:20:30.360 yeah that picture i took that picture two after she'd been in the hospital for two days i haven't

00:20:36.620 slept for two days that to send to my husband there was no i wasn't taking videos of this

00:20:41.560 little teeny tiny baby and this little bright child yeah he's so little and it just he looks

00:20:48.140 so vulnerable and i know they they didn't this is so this is so interesting to me because it does

00:20:55.260 cross a different kind of line i'm looking at this story on entertainment tonight on et online.com

00:21:04.380 Are these people celebrities now? I covered celebrities for a long time, and I would argue that we are crossing into a space where influencers are now being covered like celebrities. They're certainly on Entertainment Tonight with the headline, YouTube star Cole LeBran's son hospitalized after suffering seizure.

00:21:26.600 right right I mean I don't know what is the line between like celebrity and influencer like is there

00:21:33.520 even a line anymore I don't know like with this family like I think between Cole Savannah and

00:21:38.880 Everly they must have like 15 million Instagram followers you know so like yeah I guess that is

00:21:45.680 a celebrity you know and but it's just I don't know I think the thing that is so hard for me

00:21:51.680 as like a person who has been hospitalized and like gone through surgeries like many times in

00:21:56.700 my life with watching this is that like when you're sick in any way, but especially in a

00:22:03.360 prolonged way, like if you're chronically ill, if you're disabled, like so much of your life

00:22:08.520 and your body doesn't belong to you. Like I often just feel like I have to like hand my body over 0.99

00:22:14.960 to doctors and just be like, you know, best of luck. Like, let me know how it goes. And I don't

00:22:20.660 know if i'm like expressing it well but it's just not it feels like it's separate from me

00:22:28.040 and this like content machine behind the disability feels like it's just making that

00:22:34.980 separation even deeper yeah yeah i mean it really it really does and especially when it's a kid

00:22:42.180 because their body their body never belongs to them it is being a kid being a kid is is so hard

00:22:48.480 They have no autonomy and no agency. And so to have the people that are supposed to be protecting you talking about this and, oh, oh, I just, oh, I just, I just accidentally, I just accidentally clicked on another LeBron video. I don't know how to work with technology.

00:23:05.480 You're going to have them in your FYP everywhere now. I cannot believe you didn't know them.

00:23:10.340 I didn't know them. That's the thing. There's so many influencers out there.

00:23:14.060 so many that there's still and people that cover influencers when i talk to them say the same thing

00:23:20.000 when i was talking to jess gross from the times about the frankie story she was amazed that she'd

00:23:27.360 never heard of this person but there's so many niches there's so many niches so yes yes even as

00:23:33.740 a person that's been doing this for three years there it's just it's like christmas morning every

00:23:39.540 day i know in like a terrible way in a terrible way and so yes now i'm going to be served all of

00:23:48.680 this content that i don't want do you know that i i recently got myself a work phone and a like

00:23:56.900 personal phone for the first time since i had a big important editor job where i was traveling

00:24:02.640 all over the world covering news and so my work phone this is the funny part about my life is 0.99

00:24:09.440 what has all the social media on it and my personal phone my personal phone doesn't have shit 0.93

00:24:14.980 it's like a motorola razor yeah my personal phone i can it's still a smartphone because i

00:24:22.800 want to take pictures with yeah obviously so it's like i can text really essentially that's it

00:24:29.600 I have all of the social medias on the work phone and I've never been happier. And that means that

00:24:37.160 I'm not going to be served this shit when I'm having my me time. That's genius. Honestly, 0.99

00:24:43.200 I might take a page out of that book because I'm just like, man, sometimes I'd love to just look 0.96

00:24:48.020 at like stupid subreddits and not have like YouTube family vloggers or TikTok snark or like 0.96

00:24:53.760 whatever coming up and just being like oh now i have to look into this yeah no no shit so now so 0.99

00:25:00.540 now that i'm being served all all of this content i'm looking at a video right now that says our boy 0.82

00:25:06.040 has his first surgery yeah that's then that's the title of the video i know i know baby boy

00:25:16.520 where it's wearing this little shower cap that babies have to wear when they go into surgery

00:25:21.580 my heart i know i mean it's so strange like uh but this is the thing like if this is how you

00:25:31.140 make your living like everything is is fair play for it you know or that seems to be how they look

00:25:37.760 at it like these kids have videos of their births on the internet or i mean even before that what

00:25:44.540 blows my mind is that they'll have videos where the parents are like oh we want to have another

00:25:49.460 kid and then it's like the next one's like oh we took a pregnancy test and then it's like the

00:25:53.180 gender reveal so they literally like have an online footprint like before they're even born

00:25:58.520 before they're born before they're born and we've talked about that on this show before how crazy it

00:26:03.180 is to have your entire life documented from the moment that that someone took a pregnancy test

00:26:09.260 i'm guilty of it i totally posted the positive pregnancy test online still hate myself for it

00:26:15.360 Still beating myself up for it.

00:26:17.840 I'm just going to say one more title of one more video.

00:26:20.340 Yeah, absolutely.

00:26:21.980 I'm sorry, everyone.

00:26:23.100 I got so many messages after the Ballerina Farm episodes from people who said this wasn't on my radar before.

00:26:31.900 And now it's sucked up eight hours of my life.

00:26:36.260 Screw you, Joe Piazza and Under the Influence. 0.96

00:26:39.240 Sorry. 0.92

00:26:40.000 Sorry, guys.

00:26:40.900 The LeBrant family, it's going to do the same thing.

00:26:43.480 I don't mean to do this to you.

00:26:45.120 i really don't but here's another video that says zealand and then all capital letters stopped

00:26:51.340 breathing dude i know i know and they actually like one of their big scandals was that there

00:26:59.200 was this kind of like um oh let me look it up because i have to i have to get this right but

00:27:03.860 they did this kind of like documentary is what they called it and it was like a 42 minute youtube

00:27:10.180 video and the title this was when their daughter was i think the youngest child that they had

00:27:16.260 um posy is her name and um the title of the video was she got diagnosed with cancer period

00:27:23.860 and then it said parentheses documentary and the thumbnail was like the daughter like cozy right

00:27:29.580 and like the beginning of the video is like six minutes of like yeah posy's been having like

00:27:34.900 you know these like weird symptoms and like blah blah blah and then eventually they get to

00:27:40.160 like well she's fine but other kids have childhood cancer and it's really an issue and then it like

00:27:45.680 launches into this like documentary type thing but people were like did you just like clickbait

00:27:50.480 us that your kid has cancer yes yes you've just been clickbaited that the child has cancer that's

00:27:59.120 exactly what happened oh god i've been saying that so much in this episode there's been a lot

00:28:06.240 of oh gods here i know oh so not only did they document not only did the labrant family document

00:28:14.880 that their son's seizure but they also documented their daughter's cancer journey

00:28:20.760 that she didn't have oh okay oh okay so yeah it's a very strange video you have to watch it after

00:28:29.920 this but it's basically like them being like we thought that she could have cancer and it was

00:28:34.960 really scary and she was having these weird symptoms and then being like and she's fine but

00:28:39.700 it made me think about how other kids can have cancer and then they do this like 30 minute focus

00:28:44.080 on like a kid who has cancer who is not like related to them in any way and it's just like

00:28:49.620 i don't know it very much felt like clickbait i was like aren't you worried about our daughter

00:28:56.060 and yes i mean yeah i'm now concerned for this child for a lot of reasons um

00:29:04.800 but yeah got it and i know i also know a lot about clickbait and i made a lot of clickbaity

00:29:11.940 headlines for a long time jennifer aniston says this about her desire to not have children

00:29:19.540 but i i still think this this just feels like a step too far is what it feels like to me it does

00:29:28.100 it does yeah kids using kids for clickbait using kids cancer scares for clickbait and

00:29:36.040 to because at the end of the day you're creating content in order to commodify your lives but

00:29:46.440 really you're commodifying your children right and that takes us back to who's making the money

00:29:53.220 who benefits from this and whether that money should be put into accounts for the kids

00:30:02.000 um for their futures for them to them to go to college or them to buy a house down the road

00:30:10.600 and i believe that it should or maybe it should be put into an account for them

00:30:16.320 to eventually go to therapy because one thing that we know is that the influencer kids

00:30:23.120 are not okay yeah i mean they have had just the strangest lives and i think we're only just now

00:30:33.260 getting to the point where like kids who have been like born and raised on social media are like

00:30:37.860 you know reaching the age of 18 and that kind of stuff but i just think like we're only at the

00:30:43.060 beginning of this like deluge of stories that are going to come out about like this is what it's like

00:30:47.960 to like live in a YouTube family or like this is what it's like to be like put to work since you

00:30:53.240 were a child. And you you've written about this, right? Yeah, you've covered this. So we're going

00:30:59.620 to that we're going to end this wonderful episode about medical influencers right now. And our next

00:31:07.560 episode, we will still have you on the show talking about what is it like to be a sharented

00:31:16.360 child. Yes. Spoiler, it's not great. It's a little weird. 0.87

Under the Influence (with Jo Piazza) - October 05, 2023

Is a Sick Child Content？ With Fortesa Latifi

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