CART TRANSCRIPT
Arizona State University
TikTok Experience: Disabled Creators
February 27, 2022
CAPTIONING PROVIDED BY: MEGAN WELLS-TEEL
EQUAL ACCESS SERVICES LLC.
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Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility. CART captioning and this realtime transcript may not be a totally verbatim record of the proceedings.
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Introductions
>>Liz Grumbach: Hello and welcome. Welcome to the second event in Experiences on TikTok virtual panel series, co-sponsored and co-hosted by ASU Lincoln Center for Applied Ethics and The Online Creators’ Association. I am Liz Grumbach the Program Manager for Digital Humanities and Research at ASU's Lincoln Center. ASU’s Lincoln Center is an organization committed to exploring co-creative and participatory strategies for ethnical technical innovation.
>>Sarah Florini: Hello, I am Dr. Sarah Florini. I am an associate professor of film and media studies. I am affiliated and have been working with the Lincoln Center, and my research focuses on technology. I'm really excited to be here today.
>>Liz Grumbach: We are excited because this event is a year in the making and we are excited to partner with TOCA to make events like this, alongside our ongoing research collaborations.
>>Sarah Florini: This collaboration grew out of a project that Liz and I began after we, and so many other people, joined TikTok during the pandemic and became completely fascinated with the algorithm and how both content creators and general users were using this new platform and negotiating it’s ever-shifting algorithmic terrain. So we got in contact with TOCA and T.X. Watson, and you can find a recorded talk on the Lincoln Center's YouTube T.X. did for us. We have been collaborating for the past year on where we can find places to combine TOCA’s resources and approaches with academic experiential knowledge. This series of panels is part of that effort.
>>Liz Grumbach: We will start introductions soon, but I want to start today by extending an intention for today's event. This is going to be a feminist and antiracist space. We are proceeding from a place of care together to create a place where everyone is welcome and discrimination and intolerance are not tolerated. We also have a live captioner today. Thank you to Megan Teel and in case captions lag in Zoom, a link to the live transcript will be posted to the chat in just a moment. Before we get started, a couple new housekeeping things. The Q&A and chat in Zoom are enabled today. Please post questions in Zoom so we can keep the back of the house organized. Say hello, highlight your favorite parts of conversations, use emoji's and we will just be in community together. With that, I will turn it over to Sarah to introduce our moderator, and we will see you in conversation.
>>Sarah Florini: Alright it's my great pleasure to introduce our moderator T.X. Watson, they make informative talks about information, psychology, language, and does research for The Online Creators’ Association, which is an organization that has been created to help users understand the platform that they are creating on better. They also host the TOCA livestream on Monday and Thursday nights. Please take it away T.X..
>>T.X. Watson: Hi welcome to “Experiences on TikTok: Disabled Creators.” I want to go over a couple things about the overall structure. We will do quick intros right now. At the halfway point, when switching from the panel Q&A to audience Q&A, we will do longer introductions because I want you to have an opportunity to hear from the panelists and then get their names and list of projects, rather than get the list of projects and then realize halfway through the panel that you would have loved to hear that list, again.
We also want to try and open and close the panel today with joy. We are going to talk about a lot of things wrong with TikTok today, and there are at least an hours’ worth of things wrong with TikTok when it comes to disability, but we don't want to be apocalyptic here; there are reasons we care about this platform and there are reasons we are trying to push it to be better rather than leaving, and we want to make sure we talk about ways that we benefit from being on the platform, ways our lives are made better for it. Without further ado, I will get onto introducing our panelists. Glow can you introduce yourself?
>>Glow: Yeah hi. My name is Glow @glowlockel..
>>Rae: Hello I am Rae @raeostomy, I delve into mental health subjects as well as chronic health issues as they come up and I'm excited to be here.
>>Jade: hello my name is Jade and my handle is @JadeSparks9 I post relating to disability, indigenous issues, and a little bit of music.
Panel Discussion
>>T.X. Watson: I will get right into it. What got you guys on TikTok in the first place?
>>Jade: I know for myself I have been around for a long time-- cosplaying meme-cringe compilations that I thought were really cool. I wanted a place to share the art I was making and the silly little costumes I was wearing.
>>Rae: For myself personally it was a little bit of a long journey to get to the TikTok platform. For several years prior I was advocating primarily over Instagram and Twitter. By 2019, when I learned I had to have ostomy surgery, my sister coincidentally got me in contact with one of her friends from high school — Shay (@shaeshitsinthebag). She talked to me about her experiences with her ostomy surgery and eventually what they were doing inspired me to take it up a notch with what I was putting out there. I saw they had a lot of advocacy going on through TikTok, so I decided ‘hey why not let's give this a try?’ In 2019. With my surgery and leading into our lovely pandemic, I got hooked very quickly.
>>Jade: For me, it strangely started--I have heard there were a lot of minors being treated wrong by adults, I thought I could help to stop some of that, but at the same time my health was going downhill. It was almost kind of an accident.
>>T.X. Watson: Glow and Rae, did you both get on the app with intentions on becoming creators? Jade, you said you got on and started scrolling?
>>Jade: I got on because--I forgot who did it, but someone put out a call for young adults to get on TikTok to help report and step in and help the minors.
>>T.X. Watson: What got you to start making videos?
>>Jade: To be honest I'm not sure, I think part of it was being isolated, and then I was having a lot of things going on with my health I didn't understand at the time. So I figured maybe if I just put it out there, someone would know. Sure enough, I learned what my true diagnosis was via TikTok.
>>T.X. Watson: I would love to follow up on that, that's a common experience, getting on here and finding out more about your disabilities, illnesses, and experiences. Glow and Rae, have you had experiences dealing with that?
>>Rae: Myself personally I have been seeing a lot of content on the mental health side of things and about how a lot of the anxiety symptoms that have been plaguing me can also be tied into a very likely autism diagnosis that I will likely not seek but will claim for myself. And it's just been great seeing a community of people through the app you can relate to and bounce these experiences off of, and just have that constellation of these people. They get it. So cool.
>>Glow: I had almost the same experience. I dealt with a lot of mental health stuff throughout my whole life. Being on TikTok and seeing autistic creators, I was thinking oh I relate to this. And knowing I have other autistic people in my family, that's something that could be a possibility for me, and now I'm at a point where I'm deciding if I want to look into professional diagnoses? Probably not because that's a lot, but it's definitely been something that I wouldn't have thought to look at if I wasn't on TikTok.
>>T.X. Watson: In the chat right now, [reading chats]: Have you made other connections with other creators on the app? Have you found a community?
>>Glow: I know I definitely have; I have found cosplay and other people with disabilities. Finding people who understand and who you don't have to complain something to… like, “oh this thing or some concerning disability thing.” I don't have to explain to somebody why it's frustrating or a problem because they understand and get it. I found a lot of people like that through TikTok.
>>Rae: I relate to what Glow is saying, I've also found a little unwanted spice in the disabled community also. I see people playing the suffering Olympics, so I stay away from that side of the disability community, but I would say seventy-five percent of the time the community itself is a joy to be in. And I really just value the time and effort that any disabled creator puts into showing a piece of their life because that's vulnerable, and that's difficult to do. It's not easy being seen all the time. I certainly have my days where I don't want to be perceived, so I don't post content, but just knowing that I feel able to do that, there is a community of people who get it and relate to what I'm saying. That's just a relief.
>>Jade: I definitely agree with both of you. I didn't really consider myself disabled when I first got on TikTok. It was the algorithm and other people who found me and kind of adopted me. They were like “you are ours now.”
>>T.X. Watson: That's adorable. I love that. So, that's your fellow creators; What about your relationship with your audience? How do you feel about having followers? How do you feel like you interact with them?
>>Glow: I never expected to be where I am. I didn't join with the intention to create things. I didn't think anyone would see it, so realizing there were people who cared and wanted to see the things I was doing, but not only that, who were there to support me when I was having some really big frustrations — they were there to be like “hey we've been here since the beginning and we aren't going anywhere” — that has been really nice. It's stressful knowing that there are people who look up to you. It's strange because like, you've never met me, but it is nice to know those people are out there..
>>Rae: I absolutely agree with Glow. It's a big responsibility to be somebody that people look up to in that regard. There's a lot that can go wrong on the Internet, and I never want to be a part of anything that's wrong for somebody else. I realize not everybody is going to like me, but having the audience of people that understand and respect what I'm going through is great. And that is when TikTok decides to show me to the correct audience. There are certainly instances in which I would end up on the general viewers FYP, and for anyone who doesn't know what an ostomy bag is — like my shit bag is hanging out. A lot of people ask me what's going on, which is a little stressful. I don't like waking up to hundreds of comments like that. So if I have a video that could end up on the wrong side, I will disable comments until I know I'm in the clear.
>>Jade: Yes, I do that with positive experiences. I have a large growth and followers. It's kind of surreal, and it’s a responsibility I don't think any of us were really prepared for. You know they teach you to do your homework, go to work, but they don't really teach you how to be a creator when you're a kid. I do also agree with the whole "wrong side of TikTok" thing. Usually my comments are really positive, but if a video gets on the wrong side, it gets a little hairy.
>>Glow: I was going to say, I recently started a second account so I can talk about disability and other things I enjoy more. But on my main cosplay account, I don't often talk about disability. And I find if I do take the time to talk about it, it does often not get received by people who are willing to listen. And that can be really really frustrating because they are not kind, always in the comments section. Sometimes they say mean things just to be mean, and sometimes they say mean things that they don't think are mean, and I don't know which of those is harder to hear. So there are a lot of good people out there, but also sometimes you get those people who are not so good.
>>T.X Watson: I always found it's a lot harder to get comments from people who clearly mean well. And [from] someone that you don’t want to hurt — somebody who you specifically care about not hurting — because it's hard to be just mad at them, so you just feel bad. But yet we've hit sort of two of the major categories of interaction on the app that I have down here, other creators and audiences, and we touched a little bit on the third category, which is the app itself and how you experience interacting with TikTok as a platform and as a company as disabled creators. Jade, do you mind if we start with you?
>>Jade: Sure. I guess the best way to describe it is — while I think TikTok, as a company, means well, they do things that they say protects [people], but it's a hard situation because if you reach the wrong audience, you do get those comments. But at the same time, I think they should focus on moderating the comments rather than stopping people from seeing us.
>>Rae: Absolutely makes sense. I've seen so many instances of this, some of which has happened to me as well — instead of protecting the victim of bullying, TikTok moves to suppress them because it's easier to say the bullying isn't happening than it is to wipe out the bullying itself. Or for [TikTok] to address the ableism of people who are giving us these negative comments. It can be very disheartening that maybe they don't have our best interests in mind in the way they think they do.
>>Glow: Yeah, there is very much an issue when they are simply not showing our content to people instead. You know I've reported hate comments and TikTok then says there is nothing wrong with [those comments], and that's a problem. That's an issue.
>>T.X. Watson: I just got a note from the back of house saying that you don't need to be nice because TikTok isn't moderating this event.
>>Rae: So we can let the F bombs happen?
>>T.X. Watson: Absolutely. And I do want to throw out that in 2019 there was a leak about TikTok's moderation practices that came out on “Auto R”, one of TikTok's moderating categories, and it was mainly used for visibly disabled creators. It would cap your potential views. There was a hard cap after you hit this number, somewhere in the thousands, and your video just wouldn't go to the following page or the For You page. People could only see it if they went to your page/profile. TikTok said they were doing it because of bullying, and their theory was you cannot get bullied if people don't see your content. It's been like this for a long time, the attitude TikTok takes institutionally is that people being targeted, and people being visible, is the problem. TikTok has claimed they ended that program and no longer moderate that way, but we now know the way the culture and the way the company works, and the decisions they thought were good ideas in the past.
>>Glow: Personally that's upsetting. I can technically choose whether or not I look "disabled," on TikTok. I wasn't making content in my wheelchair until October. I did a long project where I had to get into cosplay for twelve days in a row. I knew my body wasn't going to be able to handle that if I made my TikTok's standing up. It just wasn't going to happen. So I jumped in feet first in making content, now almost exclusively in my wheelchair. I stand up sometimes but for most of the time, I'm sitting in my wheelchair. Making that choice to switch to being visibly disabled when before you really couldn't tell that kind of stuff makes this so upsetting, because it's wrong. It's unacceptable. Even if they say they have taken it away, how do we know for sure, you know?
>>Jade: I also feel like even if they are not using that specific program, there are a lot of ways to elicit the same effect. I know for me personally, my videos will start slowing down at some point. They could have a good ratio or could be skyrocketing, and then suddenly it stops. Often times it's after one mean comment. TikTok sees that, and they are like “Nope we are shutting it down.” Instead of shutting down the commenters, they shut down the video.
>>T.X. Watson: Yes we can talk all night about how to figure that out explicitly.
>>Rae: They absolutely hate any video where I show my bag. Without a doubt, it will be flagged and under review. As a piece of fabric, is it really that offensive to you? You have just trained the algorithm to see my ostomy bag, like “oh no, hold on honey.”
>>T.X: If you got a magic wand that changed apps what would you change about TikTok?
>>Jade: For me, I would change how they interact with creators. They tend to see us… they don't really talk to us about decisions nor as an integral parts of the app when in actuality, no one goes to the app to watch nothing. I think a lot of problems with TikTok could be solved if they reached out and spoke with creators, especially those from marginalized groups.
>>Rae: I think Jade brings up an excellent point of them talking to us. How much of that happens when the app reaches out via a quiz about how users enjoy their experiences, about issues we are having with the app, etc. I don't know. If they did more to get to know who is actually using the platform, they could make it a better place. Because I could guarantee you there's a large disabled community on this app, and they want to be seen and they want to be heard. So if we can get them from seeing us as "inappropriate content," and have them view us as people with voices that should be heard and respected, it would be great.
>>Glow: Like you said, how often do they reach out and ask us opinions about things? When they do send out those little surveys in notifications, it's often not about the things we are actually saying are a problem. We are saying, “hey it's an issue that there is not a good comments moderation system”, “it's an issue our videos are not being shown to people because of our visible disabilities.” They are asking "which of these posters you like better?”, "Which of these poster designs do you like?" That's what needs to be changed. There are other things that are also very important that they are not asking us about. They don't give us the opportunity to ask what's wrong, so that's not going to fix it.
>>T.X. Watson: Alright, we are going to move on to audience questions pretty soon, but I want to give you an opportunity to let everyone know where to find you. The last question, have you expanded in other spaces? Now is a great time to answer that. Tell people where to find you. TikTok doesn't like when you share your other platforms. Rae, can we start with you?
>>Rae: Sure! I am on Twitch, Twitter, Instagram, all of which I don't use as much as TikTok. I will try to utilize those platforms more. I also want to mention that I have plans to sell art on Etsy soon. I will be drawing on unused ostomy bags and sell them as a way to raise awareness and give people an opportunity to have some cool disabled art.
>>T.X. Watson: Awesome. Jade?
>>Jade: So I am @JadeSparks9 - I'm also on Instagram and Twitter, and the project I'm working on is my families consulting firm is getting ready to start doing disability consulting.
>>T.X. Watson: Awesome. And Glow.
>>Glow: You can find me on TikTok, Instagram, and Twitter. I will work on using Twitter more at @glowlockel. I am also on TikTok @glowspeaks speaking about disability. I also have some RPG projects coming up soon and info on that will be up on all of those places. Yeah, I think that's about it.
>>T.X. Watson: Awesome. If you missed any of those, I think most of those links are already up and at some point when I update the website, they will be up at official TOCA talks page (https://www.officialtoca.com/talks). I will get all those links updated, and everyone will be able to find that stuff asap.
Audience Questions
>>T.X. Watson: Question 1: I love this community, but I don't have desire to make content. How can make friends without content or posting?
>>Rae: I say one of the easiest way to make friends in my opinion is to interact with them. Show them that you care what they are talking about, engage with what they are saying — maybe I have experience that can relate back to this, or “hey I really like this book you're reading, perhaps we can talk about it?” Just put yourself out there. As someone with anxiety, that's saying a lot to put yourself out there, but it makes a difference.
>>Glow: Oh go ahead.
>>Jade: I definitely agree with Rae. If you want to interact, definitely comment. I feel a lot of people say “oh I've been liking and watching your stuff forever”, but it's hard to see that because of the way TikTok shows us notifications, but if you comment, we are more likely to see it.
>>Glow: I remember usernames. It's exciting to be like “hey I've seen you in the comments section.” Discord servers is another great one. If you can find servers for chronically ill or disabled people, or even just other interests you have. And then you can find the chronically ill or disabled people in those servers and find and form your community that way, that's helpful because you don't have to post content, but you can interact with people. That feels a little more personal, and it just feels a little different than just commenting sometimes. At least that's how it's been for me.
>>T.X. Watson: Question 2: How do you strike a balance with your content, when it comes to crating content to educate vs. creating content for your own entertainment? Do you ever feel pressure to keep your content solely focused on educational?
>>Jade: For me, I try to kill two birds with one stone. Ninety percent of the time I'm trying to make sure my content is both educational and entertaining. Because honestly when I think about when people are scrolling through TikTok, they aren't looking for a lecture, but if I can work important information in a trend or something more entertaining, I have more success with that.
>>Rae: I try to follow a similar posting scheme as Jade mentioned. I will make education fun in as many instances as I can, though I do definitely buckle down and try to give informative responses to people. Like in the comments section, I will reply and give them a very put together spiel about what they are asking. I have noticed that for some reason, and it depends on the week, there are days TikTok takes a thirty second response with no music or dancing and give it a lots of views — considerably more compared to my own personal experience — and something I have worked on for a half hour to put together, editing-wise, will just be brushed by. The balance is hard to manage, and it's hard to see exactly where the app wants me to stay. Personally just want to do my own thing and do it makes me happy, regardless.
>>Glow: As someone whose content is noneducational, I just try to branch out and give myself another space where I can make the educational content, and doing more educational has been newer to me. I just have tried to be very gentle with myself, and I know that I want to be able to educate people, but some days I don't have the energy to do that. I don't have the emotional capacity to deal with the backlash that comes with it, and I just try to let myself know that it's okay to put out that education when I feel like I can handle it, and then not feel pressure to constantly educate people, because there's lots of places to get the education that is also visible to me.
>>T.X. Watson: How do you feel about the upcoming drop of new community guidelines in March.
>>Glow: I'm always really skeptical.
>>Rae: Yes, I'm always like what kind of bullshit are they going to do this time?
>>T.X. Watson: I noticed under child endangerment that grooming behaviors are prohibited, but I have also noticed on a couple of occasions — at least one where this is definitely what happened — people getting their lives shut down for child endangerment just doing their hair and makeup, which makes me feel like they didn't explain well enough what grooming behaviors mean.
>>Rae: Personal grooming is a little different than what the guidelines apply, but alright…
>>T.X. Watson: Next question, my partner is a disabled creator on TikTok. They're very talented and make great content, but I hate TikTok on a moral level and don't like supporting the app. Do you think TikTok will realistically change for the better?
>>Glow: That's why this exists; we think we can get it to try to change for the better. So fingers crossed, we are trying.
>>Jade: I think as we keep doing events like this and reach out to people outside of the app, and as creators from the app gain more influence from the app, I think eventually the app is going to have to realize they rely on us and realize what we are doing is helpful.
>>Rae: Yes, and I think the louder we become about discrimination across the board on the app, the more likely we are to see some change. The way we are holding this event now is a great step for inclusion, and showing that “hey we have a voice now, we are on this app, and we have some shit to say, so you better listen.”
>>T.X. Watson: There is a question in the process of being written in the backstage doc… Are there tactics that are being performed on other apps?
>>Rae: My Twitter page has a little over three hundred, rather than the three thousand I have gained on TikTok. I think a lot of it is luck of the draw. You are chosen by the algorithm as something worth seeing, and either you hit the niche, and you start to sail, or it keeps you under. It's hard to say exactly what will work for each individual under that circumstance.
>>Jade: I haven't been doing disability advocacy for very long. I did start that on TikTok, but I have done advocacy work my whole life. I worked for multiple nonprofits, but I would say none of that prepared me for TikTok. All the tactics I have learned and accumulated, all of them went out the window because TikTok's algorithm is so different than anything else.
>>Glow: Yeah, and that's about where I'm at too. Occasionally, I yes mostly on my Instagram stories. I will talk about things, and it's just such a different energy than on TikTok, and I'm not quite sure how to describe it, but TikTok is very much its own monster.
>>T.X. Watson: Yeah one of the things I often talk about in TOCA organizing is when we talk about pessimism — about the prospect of taking on such a massive project. I don't like to say we are guaranteed to win, or that we should have categorical faith that we are going to successively change things because that's a recipe for burnout. When you don't see results as fast as you want to or when things go wrong when you needed them to go right. But the worst-case scenario, if things go as bad as they can, we are creating a body of experiences to help the next people on the app. The least we can possibly be is information for a successful movement-- and I hope to be a lot more than that, but worst-case scenario, we are at least that.
I have a question for Glow. Glow, when you did your cosplay project in your wheelchair, did you notice a decrease in visibility compared to your previous cosplay videos?
>>Glow: No actually. The first cosplay I did in my wheelchair, a lot of people saw it. It was a very strange situation. A lot of my content had been doing so-so, it was whatever, and I did a couple videos in my wheelchair, and Hank Green saw it. That was weird; I don’t know what happened there. Now, it's either one or the other. I'm almost always in my wheelchair, sometimes you can see it, others it's from the waist up. Sometimes they will do very well, then poorly. Then really well and people are mean, and I have to take them down. So it's a massive tossup; I never know what the response is going to be.
>>T.X. Watson: And to open it up to panelists, have you noticed distinctive trends on how your videos perform depending on how visible you make your disability?
>>Jade: Yes, so I've definitely noticed a weird thing about it; if my disability is visible, but not the point of the video, it is kind of seen as a feel-good thing, and I think the algorithm pushes that out. But if I'm actually talking about my disability, that's where it has a bigger problem.
>>Rae: For me, it's really hard to say because in some videos where I address my disability directly, they do great. And then other ones, the indirect showing of my bag while I am doing a “get ready with me”, or “what I'm doing today” — sometimes those get pushed out too. I wondering if the app just sees me living my life as a form of inspiration porn. Like a “look this disabled person pretending they are normal, oh my gosh, let's show everyone, right?”
>>Glow: A thousand percent. Like what Jade and Rae said, when you are doing the inspirational ones. But when showing the difficulties you face, and when people send horrible things and comments, that's what they don't want to show people. They only want to let us be palatable disabled people, and we are not always palatable and that's okay--- or should be.
>>T.X. Watson: And going back to the Auto-R moderator guidelines.. one of those were that [disabled persons] were not allowed to be put in that category if there content wasn't "visible."
>>Glow: That's the worst thing I've ever heard in my whole life.
>>T.X. Watson: Can you talk about burn out with the app, or just in general?
>>Rae: Like today, I was prioritizing rest instead of posting, and that's okay. Because we aren't always going to be at the same content level as everyone else, depending on our lives. I think the app has a hard time addressing that; they want to see creators pushing out regular content, and that can really affect you as a creator which absolutely sucks.
>>Glow: Yeah you know… I have to do a lot of work in order to film videos. There's a lot of things I need to put on my face in order to do that, and I try to make enough videos where I can have drafts backed up if I don't feel good. But there are days where I don't feel good for a long time and then I get stressed; not only do I need to make content, but it also needs to be new — making new costumes and things — and I don't have the energy to do that. I just need to work really hard at being kind to myself and not get so freaked out about not doing things that are new and not be the first person who does things, and things like that, because that will really get to me a lot. It feels like I put myself in a position, in certain areas, where I am the person that people look to, to do those new things and be one of the first people to make new costumes and things. And I have to not let myself feel that pressure to do that because nobody was actually putting that pressure on me, except me.
>>Jade: I find for me, I have developed a system to manage that where I film a lot of videos at once for trends that I think will stay trending. I have experience with film and stuff and that's where this comes in. I can film videos in my bed, and you don't necessarily know I'm in my bed for some of them…but then there's the emotional part. I try to correlate my videos with advocacy and what's going on in my life to make sure that I am sticking to things affecting disabled people because if it's affecting me, it's probably affecting someone else. Especially when there's something new or difficult to process, making a video about something before you have fully processed it exhausts the mind in a very unique way.
>>T.X. Watson: I'm going to exercise my privilege as moderator to submit a question I want to hear you answer too. Because it seems like a good place to ask. It's hard when you have chronic disabilities to get a lot of kinds of work. It is definitely hard to be a content creator. Also being a content creator is more of an accessible kind of job for disabled people. Can you talk about your experience about what it means to have access to content creation as an area in your profession compared to what you do professionally otherwise?
>>Jade: Well for me, and what I left out about my TikTok journey. I forgot the reason I started making videos is because I was a creative person-- it was extremely non-accessible. I was trying to look for ways to still use that as my job, and to reach people in a short video was something manageable for me at the time and is manageable for me most of the time.
>>Glow: I really love that because I was a musical theater major in college, and I ended up dropping out due to my physical health becoming much worse. It was so painful for such a long time, and I have spent my whole life saying I was going to be in theater, and it was going to be my job. I loved it so much, but I realized it wasn't an option for me. It was really painful that I had to step away from theater as a whole. Being able to make videos in my costumes has been such a way to make theater kind of accessible to me, and it's been really lovely, and it's made me feel better about theater. Like, okay maybe when things are a little bit better with this pandemic, I can try doing theater in my wheelchair. It's won’t last forever, and I could give it a shot again. I don't think I would have had that if I didn't find this outlet for my creativity on TikTok.
>>Rae: I also relate to using the app as a creative outlet. I did not go to school for theater, like you two---that would be wild. I was working as an analyst for some time, but now I am working more administrative roles. And I feel like I'm going to keep delving forward into the disability advocacy and maybe someday I can have a job doing advocacy for disabled people. And TikTok feels like the start of that process and being here with all of you feels like the start of that process and saying “hey, I'm getting shit done, and saying things people care about and I want to keep doing it.”
>>T.X. Watson: Awesome. We are almost about out of time, so we will wrap up. The last thing I want to ask — that last question was a very joyful point to leave off on, it felt really good to hear those stories from you guys — but in the spirit of ending with joy, I don't want to miss the opportunity to talk about it. If you can tell me about a treasured experience you have had because of the community on TikTok or the fact that TikTok is part of your life, and just close out your comments with introducing herself again and get in your last plugs, and then we will wrap up.
>>Glow: I was really excited about this question. I was in probably one of the scariest points of my life when I met my best friends on TikTok. They were looking for people to join a cosplay Skype call, and I said I can do that, and to this day they are the most important people in the world to me. I wouldn't have met them it wasn't for TikTok; I would be in a very different place in my life if I hadn't met them. They are just so deeply important to me, and I'm really grateful for that. My name is Glow you can find me at @glowlockel.
>>Rae: That was really cute. I've met some people on the app, the moment I chose to pick, it actually happened last week and six months prior. I got a comment last week from an individual telling me that six months ago, they had found my page and asked me questions about ostomy surgeries — because it was something that may have needed to happen to them soon. And it turns out they did need surgery, and they came back six months later from answering their questions and to spend time letting me know what the experience was like. It just really hit me that some of the things we are doing could help people and change lives. I think that was really special.
>>Jade: Mine is similar to Rae's surgery. Oh you didn't introduce yourself!
>>Rae: Hello I'm Rae you can find me at @raeostomy..
>>Jade: I was going to tell a different one until I heard Rae’s. I did a video recently about how a blown vein can look on a dark colored person. I got a comment by someone in the medical field that they were glad I mentioned that because they had never been taught what that looked like. To me, that's amazing because that translates to actual patients that are going to have a better and safer experience. My name is Jade, and I am @JadeSparks9 on TikTok and Instagram and @JadeSparks1998 on Twitter.
>>T.X. Watson: I will just making a quick comment that maybe we can do an event on medical racism. But we are running out of time, so I won't go on much longer.
>>Liz Grumbach: Thank you T.X! I think that's an amazing idea. Sarah and I wanted to come back at the end to say thank you to everyone. Thank you to T.X. for excellently moderating this conversation. We are so grateful for you today. Your chats and questions have been amazing. I also wanted to say please make sure you check out and register for all the events, the remaining two events in this panel series. That link is also in the chat (https://www.officialtoca.com/talks). The next event will be with the Fat Creators panel next weekend, March 5 at 5PM Eastern and 3PM Mountain time. We continue to send gratitude to The Online Creators’ Association (TOCA) and Lincoln Center for Applied Ethics. Thank you to all the panelists today. This felt like such a wonderful Sunday because of y'all.
>>Sarah Florini: Thank you so much those last stories fed my soul and were a great way to end the weekend.
>>Liz Grumbach: Thank you all.
[end]