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E: Hi, I’m Emily Ladau
K: And I’m Kyle Khachadurian
EL: And I’m Ellen Ladau
E: And you’re listening to another episode of The Accessible Stall
K: Hey Emily, your mom’s back in town!
E: Yeah! She just decided to show up for this ne and we were like, why not?
EL: I have opinions
K: What are we gonna talk about today, Emily?
E: Well…you had a mad moment earlier so I’m thinking you should take this one.
K: I saw something on the internet that made me mad, so naturally we have to podcast about it. There is a Facebook page that I follow that is a Mom Blog for a little girl with CP….that I used to like very much. I follow a few of them because it’s always nice to get the parent perspective of someone like me.
E: Is it though?
K: It is, it is. Because there’s a lot of things that I don’t know, that i can’t know, that sort assume as the person with the CP but I always wanna know what the other side thinks in life.
EL: Well I’ll be the parent perspective today, okay?
K: Right, yes! Yes, you’re a very valuable guest.
E: You’re a parent.
E: So this definitely works well. Great!
K: And on this day, this page which we’re not gonna name because we’re better than that, posted a photo of her daughter in pain, crying, and the post was about the sad and ugly truth of Cerebral palsy. Which generally I don’t have a problem with, I think that part of raising awareness is talking about the ugly side of anything. I think that’s extremely important and I think you’re actually doing a disservice to whatever you’re raising awareness for. But I saw this photo of this girl crying in pain and this mother think that the best thing to do in the moment was to take a picture of it and it’s just a terrible thing and we’re not gonna link it in the description but it rubbed me the wrong way and I said something! I said something. And I was very level headed and I will copy and paste my response into the description of the show. And a lot of fellow disabled people, thanks to Emily joined in on the bandwagon and posting very similar but not the same type of thing, and she responded very passive aggressively with the “OK” emoji and the words, “Sounds good.” So I’m a little fired up, and today we’re gonna talk about why you should respect the privacy of your child with disabilities. So, here we go, take it away!
E: So after we had this conversation I was eating dinner with my parents and I decided to ask my mother what she would’ve done in various situations like this and I think that there are a couple of crucial things that we need to talk about. So first of all when i was really little, in fact I think just like hours old
EL: Mhmm yes
E:… My grandpa took some Polaroid photos of me in the NICU. And I didn’t even see those photos until I was older. I had no idea that those were my first baby photos. So I asked my mom, “Would you have shared photos of me in the NICU?” And from there got into a conversation about how I didn’t grow up in the ae of social media but that there were so many painful and private moments in my lifetime, I wanted to know my mom’s perspective on the sharing.
EL: What is the instinct that you’re not comforting your child in the moment, yet grabbing your cell phone to take a picture?
K: Hear hear!
EL: That in itself was disturbing, I mean for Emily from basically newborn days had to go through so many painful pretty scary procedures. Cast saws were some of her very first sounds and I can’t imagine even if it was today, “Oh let’s get my cell phone so I could take a picture!” There are some moments that just need to be left alone. And I’m not even talking about the issue that you were raising Kyle about this young girl who is gonna grow up and then see this picture and feel that her privacy may have been violated. Who knows? She may be like, “Oh this is really great that you put this picture here, it gives me a sense of what my life was like back then and what I couldn’t remember..” Nobody can predict what somebody’s future reaction is going to be so we can only deal with present reality and my only thought is, “No! Don’t grab a camera in those moments of life!”
E: Literally couldn’t have said it better myself, thanks for listening, bye!
K: This happens all the time. Emily, I have a question for you. It’s rhetorical but it’s also not. What is it about having a disabled child that strips that child the right to their privacy, via their parents?
E: I have tried to figure this out. Especially because it’s not just a Disability issue even though it’s very much a Disability issue I think that in the age of Social Media, all parents are chronic oversharers
K: I agree!
E: There was this Op-Ed that came out, we can link it in the show notes about a woman who, her daughter got angry that she was posting photos and posting stories and personal details on a blog and her daughter said please stop, and the mother said, “Well nom this is what I wanna do.” And so the mother tried to compromise with the daughter instead of listening to the daughter’s wishes. And this blew up on the internet but had nothing to do with Disability whatsoever. But it just points to the fact that this whole, “Mommy-Blogger, Daddy Blogger, Everybody has a Facebook” Thing has become a chronic problem
EL: Oh come on, I’m the first one to admit if the ease of cell phone cameras and Facebook had been around when you were a baby, you would’ve been all over social media. But in the cute moments. Not in the horribly painful and upsetting moments.
E: Right, like if I come home crying from school. Something like that
K: “Pose for the ‘Gram, sweetie!”
E: (Chuckles) I men, it’s really disturbing actually. And you know, I do share a lot on social media, but I’m actually very selective about what I share.
EL: And there have been times when I have been mad about certain things that you have put on social media or said about me or repeated things that I have said.
E: Yeah! So it’s… I think everyone is not immune to this in this sharing culture, but there’s this added layer with Disability where I don’t quite get it. I mean, Do you see your own child as less than human and not worthy of dignity? Or do you think you’re educating people? Do you want sympathy? Do you want pity? What is it?
K: (Sighs) I mean, the whole page, it does state that it’s about raising awareness. And again, I said this before, it’s very important. And if you wanna talk about horrible moments that come with Disability, you can do that! Take a picture of her smiling after. Take a picture of her the next morning snuggling with a stuffed animal. I don;t know! Anything but like in the moment, That’s really what got me was like, what your mom said, the instinct to take the photo. And like, I don’t know if the mother consoled her before or after, I’m sure she did! She doesn’t strike me as a horrible person. But I just can’t put myself in those shoes, and it’s not because I’m not a parent. There’s no way that I could…Like even a friend! Like if you were crying right now, I wouldn’t be like, “Hold on, suck up those tears real quick let me fire up the podcast!”
EL: “Try again for the camera!” Yeah…
K: Yeah exactly. And then there was the issue of consent, which the mom swears that it was given but ;like, I’m not even there yet! I’m at the issue of you’re doing it at all.
EL: How old is the child?
K: I think she’s eight?
EL: I mean..Old enough….I mean, not of legal consent
K: I would say eight is old enough to say “Okay fine, post this picture.” But you’re eight years old, you don’t know the implications that posting a photo to social would have!
E: And what if she literally, it seems like she posted it in the moment
K: It was totally in the moment!
E: And so, when you’re riving in pain, do you ask the kid if it’s okay. “Can I post a picture of you riving in pain to Facebook where I have 20,000 plus followers?”
K: Yeah right?? “Sure Mommy, anything to make the pain stop!”
E: I just don’t understand it, but the problem is that we see this over and over again.
EL: Didn’t you have a situation where there was a photo of a cognitively affected young man in a diaper?
EL: And I remember specifically that you sort of discussed this issue. And that young man, because of his intellectual disability couldn’t give consent.
E: Yeah and so I tried to draw the parallel that if a parent posted a photo of their sixteen year old non-disabled son, there would be outrage across the internet. But instead because this sixteen year old young adult was in a diaper nobody gave them a second thought to showing him on the internet. I just don’t understand what it is about Disability…
EL: Because people equate disability with vulnerability and these pictures capture those vulnerable moments.
K: Okay. Yeah, I would say that that’s true but I just don’t understand how that translates…I don’t see that inherently makes it okay to do.
EL: But I think this is part of a larger systemic problem. Emily and I, we were talking over dinner. I mean nowadays if there’s something threatening happening like a threatening person on an airplane or I see smoke in the cabin, I’d be terrified. My first thought wouldn’t be, “Hey let me take out my cell phone so this can be on ABC World News later today!”
E: Yeah like the people who chase the tornadoes instead of backing away from them. I mean, very different issues but it seems to be in general.
EL: It’s cultural, that the cell phone is in everyone’s hand literally 24/7 and social media, and media in general is 24/7 so there’s this need for fuel, like the fuel burning up the forest. It’s constant and it’s so ingrained in our culture now but if you guys weren’t hyper-aware of DIsability issues, you wouldn’t even be having this conversation right now.
K: That’s true. But the Mom remembers a time when there was no Instagram.
K: Unless she’s very young, and I don’t know how old she is but I wanna assume that she’s like mid-thirties. So I don’t understand like where…Cause I mean we kind of grew up with it, not as much as like Gen Z, but we were kids when there was no Instagram. So even though we remember a time without it, we didn’t have agency of our own, but this mother did, I don’t know where you learn that behavior if you’ve grown up without it when you think, “Oh okay, for the ‘Gram, pose!”
EL: Okay I learn certain behaviors just from observing. You know, I didn’t grow up with a cell phone I was excited to get a 64 Crayon box of Crayola at the beginning of the school year where the tip was all nice and sharp. But you know gradually I’ve learned to keep up with new technology and I get certain situations where my first thought is, “Oooh, gee how can I post this on Facebook?”
E: RIght, but for you and me and for Kyle it’s usually like a funny story or something that happened. You know and these really vulnerable, personal moments are not the first thing I want to post on social media. If anything, I want that as far away from social media as possible, nit because I don’t want to be transparent and honest about Disability, but because some things just belong to me.
EL: And to get back to the original, where we started this conversation was about your NICU pictures when you were first born and you had like an IV in your head and I just didn’t show you those pictures because I didn’t want to see them again! They brought up such a painful time for me that I kinda wanted to protect you from those images.
K: Yeah. There’s photos of me in the NICU. They’re not easy for me to look at. But I can look at those and say, “Okay, unfortunate as they are, those are my first baby pictures.” And I’m not gonna sit here and talk about the privacy rights of someone who’s five minutes old. That’s a different conversation than an eight year old. But!
EL: But your parents didn’t blast it all over whatever media was available at the time
K: No, but they put it in an album and they showed my grandparents who then showed my extended family. It’s certainly a slower progression than the internet but they did the same thing. I don’t blame them for it. But there’s a difference I think between being a barely conscious little lump and a child with like thoughts and feelings and stuff. But also like, the post itself, like the point she was trying to make was “Woe is me” which only added to like why I was furious. Cause it’s like, Look I’m not saying it’s easy to be a parent of a kid with a disability. I’m sure it’s harder than being a parent of a typical, able-bodied kid in every way
EL: Yes, and try being a disabled parent of a disabled child!
K: Oh, I’m sure that’s a mess! But I mean, you both can be having a hard day and I’m not like playing Oppression Olympics here but I’m saying of both of you are having a bad day because one of you is in pain, one of you is having a worse day, and it’s not you. I just really…I didn’t like that attitude of like, “No I’m the victim. I’m the one that’s having the bad day!” It’s like you are but…
E: Yeah the mother playing the victim
K: It’s like you are yes, that’s very valid but your daughter is sitting there crying and you’re an adult and you should be like
E: And you know what the real thing that got me was? The Comments section of that post?
K: Oh my God, you’re so right!
E: Every single person was posting, “Prayers. Sending Prayers. Please Heal Her.” Like, none of that’s going to happen!
K: Even people with CP were doing that! I’m like, are you guys serious?
E: I literally saw a comment that was like, “Have you tried essential oils?”
(Kyle and Ellen laugh)
E: I was like, “Bitch have you tried, Vicodin!? Get out of here!”
E: Yeah and so her awareness raising is falling completely flat because instead she’s just getting pity and sympathy and a complete lack of understanding of the actual meaning of what she’s saying. Because you cannot pray away this pain. You just can’t!
K: Which is why I commented in the first place, honestly. Because anyone who knows me…and I don’t think I’ve ever said this on the show, but you know anyone who knows me knows that I do not go out of my way to comment on everything that bothers me. I would never sleep!
E: It was actually surprising to me that you were so worked up about it. Not because I don’t agree, but just because you usually are the one who…
K: Right. I jump on to bandwagons, I don’t lead them
EL Emily’s the hothead!
K: Right, no you’re way better at that than me. But this was just like…because it was all of tha mixed with the comments and I was like, “Maybe she doesn’t get it?” Which is why i said something. Also because our lovely transcriber called me furious and showed that to me in the first place.
E: Oh so, someone else saw this and told you about it?
K: She showed me, yeah
E: Okay, got you
K: And I offered to have her on but she thought it would be better if we just did it.
E: Our transcriber also has CP. Just for people who were wondering.
K: Yeah she showed me and we had had a conversation about it, and then you and I had a conversation about it and the more and more I speak about it even while doing this, I’m realizing more and more just things that are wrong with it.
E: The big thing that’s really getting to me now though is the passive aggressive responses to actual disabled people
K: That’s the thing!
E: Like hey, can you maybe think about what you’re doing here?
K: That’s the thing! Like I really read what I wrote again and again and I like tried to be good and nice. Cause I really looked at that and was like “This is someone who made a big mistake.” But it was, obviously a mistake. I’m gonna say something, and I’m gonna point it out. And she’s gonna defend herself or not. What I didn’t expect her to do though was say, “Sounds Good. Thanks” With an OK emoji. And it’s like that is the intellectual equivalent of sticking your fingers in your ears and going, “LALALALA I can’t hear you!” And if that’s the way you want to live your life, then god bless you.
EL: (Unintelligible) Disrespectful. To you and to the issue that you were raising.
K: Exactly cause like I’ve been that little girl, dude. Like I know exactly what that is. And that tells me that you don’t really pay attention to her either. And I know I’m not your kid…
EL: No, I don’t think you could say that. Of course she pays attention but there’s not true understanding unless you’re in the shoes.
K: You’re right. You’re right. But I mean, you can build that bridge. Just because my parents can never understand exactly what I go through, doesn’t mean that I can’t tell them and they do their best to understand. Because they do.
E: And know when a moment is sacred and when it needs to be respected and when you need consolation without publicizing.
K: I was talking to my parents at dinner too about this. And I asked them, “Why didn’t you do this? Post surgery, why did you never snap a picture?” And they were just like, “It just wasn’t right.” And I’m sitting there like, “Well of course, but then why do you think that this mother did this?” And they were like, “I don’t know, she’s crazy!” Which, that’s just my parents.
E: Very nuanced analysis
K: I know, but my point is like, if it’s so easy for them to be like, “No that’s not right!” Then it takes a lot for me to get to where this mother was to do that.
EL I think in defense of parents in general, I think how we respond to situations…I say everything in life is a spectrum, and maybe I sound like a hypocrite here but when Emily was a lot younger she had to wear this neck brace. And we took plenty of pictures of her wearing the neck brace, but that one annual portrait…
E: The school photo
EL: Yeah or the JCPenney one, the neck brace wasn’t on, and that was the picture that went on the living room wall. And that was basically just my michegas.
E: Basically you didn’t want the Disability to be as visible.
EL: Right. For just that one moment in time. And so I can understand in the opposite direction how parents sort of think about situations and then make a decision.
E: Yeah but I feel like you’re going in the complete opposite direction
EL: Well I’m saying it’s the opposite direction, I’m just saying that parents do that all the time, make decisions about how they want things represented.
E: Well I’m gonna challenge this particular parent and all the parents who are doing this particular form of very much oversharing, to make better decisions.
EL: Yeah, well totally agree in this case but I don’t want the takeaway from this to be that parents don’t have some rights to make decisions about their minor children…
E: Right, that’s valid but like, do better
K: Yeah parents have agency over their kids to a point
EL: Yeah, definitely do better in this situation.
E: So here’s the question then. What do we do? Because I have found that so far every time I have tried to call out someone for doing this, I’ve just gotten an angry response back. Like, “You don’t understand what we’re going through, you’re not in my shoes, it’s all about me. Who cares about the kid, I’m the parent, I’m suffering.”
K: I agree with that, I have no idea what you’re going through, but show me a picture of your tears then! Why won’t you do that? Oh is it cause it’s embarrassing? How interesting!
E: I just haven’t figured out what the magic formula is because people eat this stuff up, people crave attention, people want a way to vent about whatever’s going on in their life and they do so in this very public forum…And when they get called out for it, rather than being like, “Oh you’re right I would not want myself to be shown in this situation! Why is it okay that I’m showing my kid in this situation? Instead, they are like “Back off! You don’t know my life!” I don’t know your life, but I do know the very basic etiquette of how you should be treating your kid.
K: Yeah, precisely. Precisely. And also, I would say that I probably do know your life a lot more than I would otherwise want to, because of you doing things like this.
E: Yeah I get that. And also, because we have disabilities. You know, we’re not just anyone coming from anywhere, expressing an opinion. I mean, yes we are but because we’re adults that have disabilities, I feel like parents seem to forget when they have younger children with a disability that one day that kid’s going to be an adult with a disability. They’re not there yet, and I think that’s a huge flaw of every system that used to provide care and intervention for disabled kids. No one is about life beyond eighteen for someone with a disability.
K: And then the consequence of that is you tend to think of your adult children with disabilities as minors, when they’re not. Not literally, but you don’t treat them like you would a typical “however old they are” because their different.
E: Infantilizes them
K: That’s the word! I couldn’t remember it for the life of me… but it’s true! LIke I’m not saying there aren’t certain situations where you having a disability doesn’t warrant you being treated slightly differently. But that difference in treatment is in adaptation to your needs, not a completely separate outlook just because you’re sitting down. And that’s what I think that a lot of parents don’t understand.
E: It spans the entire breadth of types of disabilities .
EL: Well I have a question. Was this photo posted…I don’t wanna use the word…Do I want to use the word exploiting the situation just as a way to increase her blog?
E: Probably. I don’t know
K: So I was thinking about that. So it says, I’ll give her some credit. It actually says on the About page of her Page, to not Share anything. But of course
E: Wait, what?
K: It says, “Please don’t Share anything I post here.” It does say that. Which is stupid because it’s Facebook
E: Wait I’m sorry. I need to go back and look at this but maybe help me understand this, like you can literally hit the Share button on Facebook.
K: Yeah, I know. It’s like a cursory thing. She didn’t say it in the post, It’s actually in the “About” section like, “Please don’t share!” as if i’s not on Facebook. Right.
E: There are twenty-two shares right now of her daughter…
K: So that’s my point. So now, that’s what I’m saying. Yeah, right. So now if you look at al of the rest of the photos, especially of the ones of her smiling and her all well and good, they’re all very cute but they don’t have nearly the engagement and th reaction and the “Shares” and the “Likes.” And I know as well as anyone else does who has any social media account, that everyone likes when that number goes up. And I sincerely worry now that this will only lead to an increase in more photos like this because hey, 700 Likes!
E: Yeah it’s like a self-perpetuating cycle because we see that this is the kind of stuff that gets a response. It’s like every time there is some kind of inspirational or pitiful story about Disability on the news, a couple people get mad. Us often being the couple of people who get mad…more than a couple, but you get my point. And then everyone else is like, “This is amazing, more please!” And then the News is like, “Well this is good for our ratings! People watch ‘til the end for this nonsense so we have to keep doing it!” And so, you know people eat this up and I feel like every time I speak out about it, I change like one mind, and then there’s like a bajillion other people who are still like, “What is wrong with you? Why are you complaining about this?”
K: “Put yourself in their shoes! Didn’t you ever think that maybe they liked this?” It’s like, “Yeah, no, it’s not about them. I’m happy for them. I don’t even care that they want to be an inspiration, it’s about the broader message that this sends.”
E: Yeah the reality is that you don’t exist in a vacuum when you’re disabled whether you like it or not and you unfortunately represent something bigger than yourself. And I know that’s a lot to put on people, and that’s not fair, but that’s kinda how it is, especially when you’re the one who’s publicizing things!
E: Like are you not thinking through the broader impact? Or is this the impact that you wanna have?
EL: Wanna have…yeah
K: I honestly think that in this case that it’s the former. I genuinely don’t think that this mother thought this through.
EL: I could’ve just been you know…totally instinctual in a moment of despair that his body just did something that she’s just so used to doing in other situations.
E: What? Grabbing the phone, taking a picture?
K: Oh no, actually I agree with that. I agree with that. But then it takes a lot more effort to…Like if you’re in the habit f documenting your kids life, I actually agree that that’s probably second nature. But what isn’t, at least to me, is opening up your Facebook app, going to your photos, clicking a photo, writing a thing, writing another thing and pressing the “Share” button. Like, that’s a lotta steps.
E: And at any point during those series of steps did she stop to think?
EL:She could of said, “Hey, do I really wanna post this?”
E: Okay, so here’s the question then. You being a parent, I mean what would you tell other parents in situations like this? Knowing full well that you’ve been through situations like that with me, time and again! Like the time when I was seventeen after I had my neck surgery and it turned out the bed, the hospital bed that I was sleeping on was so inflated, that it was causing me to basically be on the verge of developing a pressure sore. I was in pain all night.
EL: We couldn’t figure out for the life of us what caused this spike in pain!
E: But like, in that moment were you…and you had Facebook at that time I think, or you had connections to the outside world… I mean, a cell phone. Was your instinct ever, “Let’s stop and document this?”
EL: Absolutely not! No.
K: Right. Absolutely right. See how easy it was for you to say that?
E: So, having been through situations like that with your child, what would you…And I feel weird asking this because I am your child in this sort of interview style, but what would you tell other parents who have this compulsion or this instinct to share these really painful moments?
EL: I just think, hit the “Pause” button. If you wanna take those pictures, fine. Let them sit in your phone for a little while, let the heat of the moment dissipate, when your thoughts are clear too. And then you can evaluate whether this should be posted based upon the age and cognition of your child. And maybe also have a discussion about are you comfortable with me posting this picture? But yeah, no definitely not in the moment. Slow down and maybe just write about things because a picture is a thousand words. But if you really need to express, if you can try to at least do it in writing so it will help mitigate that impact of the photo for the privacy and protection of the child.
E: I mean, I know a lot of parent bloggers of kids with disabilities who use pseudonyms for their kids, pseudonyms for themselves, don’t reveal their last names, don’t share photos, you know…And then I know others who do share things but they’re much more selective about it so I think there are ways around it if you really do want to share your experiences. I agree, just be thoughtful in how you’re doing it. (Sighs)
K: That’s a decent Final Take Away from me. Even though you said it, that’s exactly what I would have said.
E: Yeah. If I had to sum up my Final Takeaway in three words it would be, “Think before you post!” But that should go for everybody. I mean, that’s what my mom told me when I was in high School and getting ready to go off to college: “Think before you post.”
E: Yeah, you always said that to me. Or, “If you wouldn’t want your grandmother to see this, don’t post it.”
EL: Oh yeah! That’s a big one.
E: And I know granted, like in this case, it should probably only be your grandma that’s seeing this moment. So that advice doesn’t always apply, but “Think before you post” always applies.
E: Any other Final Takeaways from anyone?
EL So Emily, would you allow one of your NICU pictures being attached to this podcast?
E: At this point, I probably would
K: This is your choice though.
E: Yeah, exactly. At this point I think I would only because it contextualizes the start of my life, which is like an interesting thing for me right now?
K: I’ll throw one up there too if you do it?
E: So yeah, so maybe we’ll do it. But even if we don’t it’ even just the fact that we have that conversation and that they’re well hidden in a photo album somewhere. And I know that’s a product of the times, I get it. But I still really and truly believe that you never would have so blatantly violated my privacy. Which you have probably posted some embarrassing anecdotes about me, sure.
EL: Oh yes. Emily once asked me if people really stopped smoking by eating cold pieces of turkey!
E: Yeah like when you quit cold turkey?
K: That is so cute! Why do we say that? I’m gonna look that up later.
E: Yeah, I was literally laying in bed with my mom and I was like, “Mommy, why does cold turkey help people stop smoking? Do you really eat cold turkey?”
EL I was laughing so hard!
E: And then you called my dad in to be like, “Marc, you gotta hear this!”
K: Meanwhile, like the Nicorette company would hire hitmen out to your house!
EL: So that’s what Facebook should be for! There’s enough sucky news in the world, let’s try to keep it light people!
E: Yeah, right? But not like inspirational, just like funny! Cute.
K: Okay, that about wraps it up, right?
E: Yeah. Be thoughtful people. Do better. You can do this.
K: And might we say? You look good today.
E: Thanks so much for listening. And special thanks to the one and only Ellen Ladau, parent extraordinaire of a child with a disability!
EL And the extraordinaire Emily Ladau and to extraordinary co host Kyle!
E: Kyle’s wiggling his eyebrows right now, to audio describe that moment for you. But anyway, we really appreciate ya listening and if you would like to support future episodes of The Accessible Stall and make those episodes accessible, what can you do, Kyle?
K: You can Like us on Facebook, and follow us on Twitter and if you’re feeling extra generous you can go to www.patreon.com/theaccessiblestall even $1 a month ensures that current and future episode of The Accessible Stall remain accessible! One of these days I’ll get through that line remembering the title of our show! Good night everybody!