What’s Up WID: Chloé Hayden Transcripts

Ashley Inkumsah:
Hello everyone, and welcome back to What’s Up WID, the World Institute on Disability podcast, where we discuss what’s up in the global disability community. And if this is your first time here, I’m your host, Ashley Inkumsah, and today I am so happy to welcome the amazing Chloe Hayden as a guest on our podcast. Chloe is an award-winning motivational speaker, actor, performer, author, influencer, content creator, and disability rights activist and advocate. She is autistic and also has ADHD, and she has amassed half a million followers and nearly half a billion views across her social media. Chloe and I are discussing being autistic and having ADHD, as well as navigating internet trolls, and the importance of disability representation.

Ashley Inkumsah:
Thank you so much, Chloe, for being a guest on today’s episode of our podcast. I’m so excited to have you as a guest. So for our listeners who may be unaware of who you are and what you do, can you tell us a little bit about your work as a disability advocate, activist, and influencer, as well as an actor, and that’s just a short list of all the things that you do. So tell us a little bit more about you.

Chloe Hayden:
Okay. So my name’s Chloe Hayden, I just turned 25 a couple of days ago, which is very strange.

Ashley Inkumsah:
Happy belated birthday!

Chloe Hayden:
Thank you! I’m an actor, I’m an author, I’m a disability advocate, I’m an influencer, I’m a YouTuber, I’m a TikToker, all of which kind of just happened and all kind of just happened within the realm of me wanting to promote disability pride and wanting to spread the message of different, not less.

Ashley Inkumsah:
Yes. And I know that you were diagnosed as autistic, and I don’t know if it was at the same time that you were diagnosed with ADHD, at the age of 13. And you said that you were feeling ostracized from society, and then you started your blog and you started to share your feelings about your experiences as a person who was autistic and had ADHD. What new discoveries did you make when you started to build this blog and started to connect with the disability community?

Chloe Hayden:
Yeah. Well, first of all, so I got diagnosed as autistic when I was 13, and then I didn’t get diagnosed with ADHD until I was 23. So a 10 year gap, which is crazy. But as far as what I learned from the blog, the whole reason I started the blog in the first place was because when I was 13 years old and I Googled autism, because that’s what any kid does when they’ve just been labeled as something, the only thing that I found were these like horrible, terrifying articles written by doctors and psychologists and parents and ABA therapists and people that were like, “Here’s why autism is bad, and here’s why your life now sucks because your kid is autistic. And here’s things that you can do to stop your kid being autistic,” and stuff like that. And I was terrified about all of it.

Chloe Hayden:
So I decided to make my own blog. And I wasn’t necessarily going into it with the expectation of, oh, this is going to change the world one day. All I wanted to do was reach out because I was a terrified 13 year old, and I just wanted to try and find more people that were like me. And essentially I did, which was probably the biggest discovery that I’ve ever made. Going into this thing that I was the only one here. I used to think all the time that I’d come from an alien planet and that it was a one woman journey, and it wasn’t until a while ago that I realized that there was a lot more people from this planet with me and I wasn’t the only one here and I wasn’t by myself and there was so many more people that were going through the exact same thing I had and had been through the same things I had and were going to go through the same things.

Chloe Hayden:
And I guess that’s when I decided, okay, well, this is an important thing to talk about because I don’t want other kids growing up the same way that I had to. And it was just such a relief to actually see that it wasn’t just me. That this was such a big thing. That there was so many people that were just like me. I think that was probably the greatest discovery I’ve made.

Ashley Inkumsah:
Yeah, and that’s the thing about the internet, especially for those of us who work in the disability justice space. It definitely has its bad side of so many trolls, which we’re going to talk about very soon, shortly in our next question, but so many trolls, but there’s also this amazing sense of community where it almost becomes like a town square where we all come and meet and share our experiences.And it’s really awesome, the community that you’ve built. And it’s just been great to watch you from afar. And again, to finally be able to chat with you right now is wonderful. You’re doing such amazing work and I’m just so proud of where you, people like you, and your generation and how you guys are all building such a open dialogue to talk about things that were previously taboo for past generations. So super proud of you.

Chloe Hayden:
Thank you so much.

Ashley Inkumsah:
Absolutely. And yeah. So let’s talk about those trolls. I know that in a recent Instagram post, you said that, “Since deciding to share my story, every single day I’m met with, “She’s faking it. She’s lying. Real autistic people are not like this.”” And we all know that so many people in the disability community live with invisible disabilities, right? And often are accused of “faking it.” How do you combat these trolls and these uninformed comments that are so rooted in stereotypes of what people with disabilities are supposed to “look like”?

Chloe Hayden:
You know what? The fact that I have trolls means that I’m doing what I’m supposed to be doing. If I didn’t have trolls and I wouldn’t be creating the change that I hope that I am creating. And obviously sometimes it sucks. Sometimes people can be really mean on the internet, and sometimes people say things that are just so unhinged and so unnecessary, but at the end of the day, if I’m only speaking to the choir, if I’m only speaking to people that are disabled or whatever, then that’s not creating the change. Yes, it’s helping these people and it’s helping other disabled people, but at the end of the day, if it’s only disabled people that aware of disabilities and prideful on disabilities, then we’re not going to create any change. We need the general community to be aware of them and to celebrate them too.

Chloe Hayden:
And the amount of trolls I’ve had where like four or five years ago I’d receive a pretty nasty message from someone, or just get spam comments from this person going, “You suck and you are doing this for views, and autism sucks,” and all this sort of stuff.

Chloe Hayden:
And then, for example, like a couple of weeks ago I received a message from one of these people who had just annihilated me on the internet a few years ago, and they were like, “Hey, just letting you know, I sent some pretty nasty messages to you a few years ago. I just wanted to let you know that, first of all, I’ve done my research now, and I’ve recently found out that I’m autistic too and that I was pushing all of my anger and pushing all of my feelings that I was having onto you, because I didn’t understand this myself. And it hurt that I saw someone else that was, I guess, doing okay with who they are.” And I’ve had so many messages like that. People that are autistic, people that aren’t autistic, people that once were ridiculously ableist and have now done their research or watched multiple of my videos and gone, “Oh, okay, well maybe she’s actually onto something.”

Chloe Hayden:
So yeah, sometimes the trolls suck and sometimes it’s not fun, but at the end of the day, the trolls are the reason why you do this. If I was only preaching to the people that were already doing good and already listening, what’s the point? And look, sometimes the comments are funny. So you take some and you’ll lose some.

Ashley Inkumsah:
Totally, totally. Yeah. I think in order for any kind of systemic change to happen, you need to be having disabled and nondisabled people in the room. And it’s very interesting, what an interesting story of that experience that happened to you. It just goes to show that there’s even an internalized ableism within people that are disabled, whether they’ve been diagnosed or not is besides the point. But that is very interesting and gives me a lot of hope that people can change.

Chloe Hayden:
Hundred percent. Yeah, absolutely. And I think that’s a big thing. I think when we talk about ableism, we’re leaving out such a large part of the picture, which is that internalize ableism, particularly in the invisible disability community, and particularly in the autism community, just because. And I get it. I get why there’s so much internalized ableism because autism is portrayed to be so sucky. The only time we ever hear about autism in the media is when it’s portrayed terribly, so of course people are going to have internalized ableism because who wants to have that stereotype attached to them. But yeah, people are changing. The world is changing and it’s going to continue to change the more that people start speaking out about it and start speaking out about it correctly.

Ashley Inkumsah:
Speaking of how disabled people are portrayed in the media, we often see non-disabled actors playing disabled characters on television and also in films. And I know that you are going to be starring as an autistic character, Quinni, is the name of the character in Netflix’s “Heartbreak High”. Why is it so important that we have authentic disability representation in the media?

Chloe Hayden:
Oh my God, because when I was growing up the only representation I had was these fairytale characters that most of them weren’t even humans. And I was like, “Oh, I can’t relate to anyone else. So I guess I got to pick this one to relate to.” And then if you do start relating to the autistic people, when you do start seeing autistic people in the media, it’s Sheldon Cooper, and it’s “What Eating Gilbert Grape”, and it’s “Rain Man”, and it’s Shaun Murphy from the “Good Doctor”, and it’s these ridiculously incorrect stereotypes of what autism is. And that’s not autism. That’s not real life. That’s a neurotypical person who has done a little bit of internet research on who I am as a person and decided that means that they have enough credibility to be me.

Chloe Hayden:
And it’s so stereotyped. And it’s so sucky. And I’ve gotten into many, many arguments with people, both in and outside of the entertainment industry. People telling me, “Oh, it’s acting. It’s people doing their job,” and, “Oh, but it’s pretend,” and, “But people can play monsters in movies, so why can’t people that aren’t autistic play autistic people, blah, blah, blah.” But at the end of the day, media and TV shows aren’t just media and TV shows. Human beings like to take things on and like to create ideas and knowledge based on false fake pretend facts. And when we see the only representation of autism being white men who aren’t actually autistic at all playing incredibly unrealistic ideas and expectations of autism, then we’re going to start to see that as what autism is, and the general human population is going to go, “Oh, but you don’t look like Sheldon Cooper,” and, “Oh, but you don’t look like Rain Man.”

Chloe Hayden:
And that’s not an exaggeration. I have had probably 70 people say that to me. And when I’m like, “No, that’s not what autism is at all,” they’re like, “Yes, it is. I saw it in this movie or in this TV show.” Autism is portrayed so badly, and it means that, first of all, the outside world is going to get this horrible idea of autism, which is going to further perpetuate these stereotypes, but it also means that autistic people never see themselves represented and grow up our entire lives feeling lost and stuck, and like we don’t belong and like we don’t fit in. And it might seem quite surface level, but it is so important for people, especially young minority groups to see themselves represented, because we’re already told that we shouldn’t be here. So not seeing ourselves in media just further perpetuates that false understanding and that false ideology that we have.

Chloe Hayden:
And that’s why I’m so excited to play Quinni in “Heartbreak High”, and why I’m so excited that she’s autistic and that she’s really autistic. She’s not just like… So many people go like, “Oh, we’ll pretend that this character is autistic, but we’re not actually going to give them the label because we don’t want to lose an audience. We don’t want to make them unrelatable to the typicals.” The fact that Quinni is proudly actually autistic, and she talks about it, and she acts autistic like a real autistic person, not like a savant who is really good at math and doesn’t like socializing and has a favorite spot on the couch. She’s an actually autistic human being who lives an actually normal person life, and that’s so important for kids to see. And the world is starting to change. The film industry sucks when it comes to representation, but it is starting to change, and the more that we start to see the change in the film industry, the more we’re going to start to see that change outside of the industry, because it doesn’t just stop at film. It continues everywhere.

Ashley Inkumsah:
Are you a disabled photographer, videographer, or content creator? WID has partnered with Shutterstock and the Global Alliance for Disability in Media and Entertainment to offer $50,000 in grants, and a guide to increase and diversify authentic portrayals of people with disabilities, and Shutterstock’s content library. Learn more and apply today at www.wid.org/create-fund.

Ashley Inkumsah:
The media has such a profound effect on the way we perceive ourselves, the way that we perceive others. Especially if it’s not your lived experience, that’s all you have as a reference point is what you see on TV and what you see in movies. So it’s so powerful and it’s really paramount that content creators, filmmakers, producers, directors prioritize disability representation. And I think of a couple of years ago, the singer Sia, and I don’t know if you’re aware of that story. It was such a nightmare of a story.

Chloe Hayden:
She blocked me because I was talking about it. I was like, “Hey girl-“

Ashley Inkumsah:
Really?

Chloe Hayden:
She literally full out blocked me. I made like five different TikToks. They weren’t mean. They have gotten a little bit catty towards the end. [inaudible 00:15:30] The first one was just like, “Hey, maybe don’t hire a musical person who literally admitted to watching videos of autistic people having meltdowns on YouTube as her research.” That was her research. She watched autistic kids having meltdowns on YouTube, and that’s a whole other thing. If you film your kid having a meltdown, you should have your kid taken off you. I’m sorry. But that’s a whole other topic. The fact that she watched that and she’s like, “Ah, autism got it now.” The movie also showcased restraint methods that have been proven to kill multiple autistic people before, and were using that as like a, “Here’s what you should do in this situation.” And then afterwards Sia was like, “Oh, screw autistic people, and autistic people wouldn’t be able to handle the film industry. And we tried to hire an autistic person,” which by the way, was proven to be fake, and, “They didn’t work. So I’ve just come to the conclusion that autistic people can’t act.”

Chloe Hayden:
Oh my God, she drives me mad. And yeah, the fact that she’s allow to make stuff like that, and then the fact that afterwards she was like, “Oh no, the autistic people are being mean to me.” Shut up girl, come on. Anyway.

Ashley Inkumsah:
Totally. It’s like that could have been easily a teachable moment. She made a mistake and she could have owned it and done better, but the fact that she would up and block you, and her response in general to autistic people who are clearly speaking out is just like-

Chloe Hayden:
Very bad dude. Come on. Make a mistake, but then own up your actions, Jesus.

Ashley Inkumsah:
That’s terrible. But you are leading the way and setting the example of what the film and TV industry should be doing. So I’m just glad that there’s people like you who are leading by example, so at least we have that. And I know that you have an upcoming book that is coming out on August 30th, and it’s called, “Different Not Less: A Neurodivergent’s Guide to Embracing Your True Self and Finding Your Happily Ever After.” I love that name by the way. Can you tell us why you decided to write this book, and what can readers expect to learn from reading it?

Chloe Hayden:
Yeah. First of all, I’ve always wanted to be an author. Writing has always been my safe place. It’s always been my happy place. And that’s why I started the blog, because I wanted to basically just word vomit my diary to everyone. But this book came across as the most incredible opportunity I had. The lead publicist of Murdoch sent me an Instagram message, and she was like, “Hey, my daughter loves your videos. She’s asked if you could write a book for us.” And I was like, “Dude, this is spam. This is fake. This sort of stuff doesn’t happen in real life.”

Chloe Hayden:
So I was like, “Oh, this is whatever.” And I was like, “Okay, whatever.” I was like, “Send me an email, I guess. Lol,” expecting it to come from some whack ass weird email address. And then it was all real, and I was like, “Oh my God. Okay.” So I started writing this book probably a year and a half ago now, and it’s equal parts self-help memoir, basically me just word vomiting my experience and what I’ve gone through and what I’ve learned. And I’ve done it the same reason I started my blog and my videos in the first place. I did this because the only books that we have at the moment is books created for non-autistic people by non-autistic people, and they’re books that create our brain and show our brains to be medical and to be yuck and to be something scary and to be something alien. And it’s not.

Chloe Hayden:
So I’ve made this book for the 13 year old girl that’s just sitting in a psychologist’s office who’s been told that her brain has a label to it and doesn’t know what to do, and I want her to be handed this book. And I’ve written this book for teachers who have just found out that one of the children in their classes is autistic and want to know how that they can best support them. And I wrote this book for the psychologists and for the doctors, because I’m sure your textbooks and your research is great, but you are never going to understand my brain the same way that I do.

Chloe Hayden:
This book is written for everyone that knows an autistic person, which there was a study done in Australia recently, I think it’s, I might be getting the number wrong, but I think it’s like 99.8% of people know the word autism or have been in contact with an autistic person before, which sounds ridiculously alienating, but anyway. So yeah, this book is my entire heart. I have poured out every single piece of me into this book. And I so desperately hope if I can help even one person to better understand themselves, or to better understand someone else in their lives, then I’ve done what I was intended to do.

Ashley Inkumsah:
That is so awesome. I cannot wait to get my copy of the book. I’m looking so forward to it coming out. That sounds fantastic.

Chloe Hayden:
Thank you.

Ashley Inkumsah:
And what would you say, with this book and just in general, what advice would you offer to people who are neuro divergent and who are feeling alienated and isolated, like how you were feeling before you went on this path of being a content creator and an actor, et cetera, cetera, all of the long list of things that you partake in? What advice would you give to that person who is at that place where you were when you started your blog?

Chloe Hayden:
Who you are is exactly who you’re supposed to be, and I know that sometimes the world doesn’t make you see that as much as you should, but your brain is filled with magic. Neurodivergent brains are the most beautiful things in the entire world. No one has ever made a difference by being like everyone else. No one has ever changed anything by being the same as everyone. If you have a look at anyone in the world who has ever created change, they did it because they were different. And I can guarantee the majority of those people, if you have a look at any topic, have a look at your special interest, have a look at the thing that you love and then go to Google and type in leaders of that topic, I promise you at least one of them is going to be autistic. Every single career hobby, whatever, if you have a look at the leaders, they’re going to be autistic.

Chloe Hayden:
Because autistic people and neurodivergent people are freaking cool, dude. Your brain is amazing and filled with magic and so important and so powerful, and when you start looking at your eye sparkles, when you start looking at your superpowers, when you start looking at the things that you can do, rather than these things that society tells you that you are at fault for, you are going to start to see that, and your people are going to come around and the people that love you for you are going to come around. Understand that who you are is exactly who you’re supposed to be, and that different doesn’t mean less.

Ashley Inkumsah:
That is so profound. I got goosebumps. Just listening to you saying it. I think there’s just so much pressure, especially in today’s day and age, especially for young people, to be like everyone else, to just follow and not lead. And sometimes it’s so easy to succumb to that pressure. So yeah, I think that we need to really push people to be individual thinkers and to love themselves regardless of anything. But that can be hard sometimes to do as well, because there’s so much structural societal ableism that goes on every day, and it’s almost hard to combat that with self love. So I guess my last question is what advice would you give to non-disabled people? What is their role in this fight for liberation and equity and equality for people with disabilities?

Chloe Hayden:
Don’t be scared of difference. Difference isn’t a bad thing. And embrace what’s different in you, and in the people around you. We have such a societal expectation that we have to fit in and that we have to meet this tiny little box of normal, which most of us can’t fit in. And those of us that can fit in probably don’t really want to. Also listen to the disabled people in your lives. If they tell you that something is wrong, if they tell you that something is ableist, if they tell you that something isn’t right, listen to them. The worst thing that we can do is learn about disabled people, or any minority group, from another group. Listen to the group that you are speaking to. They have the lived experience. A hundred percent they understand better than anyone else ever could. So listen to disabled people in your life and understand that just because some ways may be different than what you are used to, doesn’t make it wrong.

Ashley Inkumsah:
Absolutely. And one of the things that I always like to say is it’s important to listen to understand, not to listen simply to respond and go back and forth. That is so important. So I think that’s incredible advice and it’s been such a pleasure to sit and talk and learn with you. It’s been so much fun. So thank you so much, Chloe. It’s been great.

Chloe Hayden:
Thank you so much for having me.

Ashley Inkumsah:
Thank you once again to Chloe for this awesome conversation. I just love how she has used her social media to build a community, and I truly had a blast chatting with her. Now you can find transcripts as well as American sign language interpretations for this episode, as well as all of our past episodes, at www.WID.org/what-what-wid. And if you enjoy today’s episode, be sure to share it and also consider making a donation to keep our podcast going strong by clicking the support button at www.anchor.fm/wid-org. Thanks to you all once again for tuning to today’s episode, and I look so, so forward to chatting with you all next time.