Episode 4: IDD Media – Podcast Transcript
Abby Rose Esposito, Marketing Specialist:
Welcome to the MediSked Podcast! My name is Abby Rose Esposito. I am a Marketing Specialist at MediSked, and I’ve worked here since March of 2020.
Alyssa Galiney, Relationship Manager:
Hi everyone. My name’s Alyssa Galiney and I am a Relationship Manager here at MediSked. I work with clients to talk about their strategic goals and how best to meet them. And I have been with MediSked since the beginning of 2019.
Abby Rose Esposito, Marketing Specialist:
Before we get started, we wanted to share why we we’re discussing IDD representation in media. CMS, the centers for Medicare and Medicaid Services, recently launched a strategy refresh that “drives our delivery system towards meaningful transformation, including focusing on equity in everything we do.” Advancing equity is one of CMSs key objectives. We at MediSked recognize that in order to achieve equity, representation matters while 26% of the US population is living with a disability. This group is one of the least represented on screen. Media has immense power to shape ideas, and it can influence how we see others and ourselves media representation can break down barriers and create powerful role models. So with that in mind, we are so excited to chat about some of our favorite media with IDD representation, but we just wanted to cover a couple of disclaimers before we get started, you will hear us use person-first and identity-first language today, as we found that there are many individuals who prefer each or both, if you have no idea what I’m talking about, that basically means that you will hear us say “autistic person” and “person with autism.”
For example, this is based on recommendations we found primarily from the Autistic Self-Advocacy Network, which MediSked turns to a lot for industry expertise. Neither of today’s hosts have an intellectual or developmental disability, but we did our best to research the opinions of members of the IDD community informing our perspectives on these films and TV shows that we’re going to discuss today. Additionally, you may hear some minor spoilers when we’re talking about some of these movies and shows, but we’ll try to keep it to a minimum. Now that that’s out of the way, let’s start with Love on the Spectrum since it’s our favorite and the one we’ve been most excited to talk about. Um, so if you don’t know about Love on the Spectrum, it’s a Netflix show that currently has two seasons out and we’re hoping for more, um, it’s basically a dating show for individuals on the spectrum. As we’ll find with many of the movies and shows we talk about today, this one has mixed reviews among the IDD community, but seems to improve at the second season. So for example, some people were upset that it seemed like the show’s creators were implying that people on the spectrum should only date other people on the spectrum, which I thought seemed to get better when Michael and Heather go to a speed dating event, I believe it’s Michael and Heather during the second season.
Alyssa Galiney, Relationship Manager:
Oh, it’s definitely Michael. I’m trying to remember now off the top of my head who the gal was, but I think Heather was probably right.
Abby Rose Esposito, Marketing Specialist:
Yeah, I think so. Some people also feel that the show dances along the line between having fun and making fun of the show subjects. Um, but as April Ryan, a journalist with Asperger’s syndrome wrote, “it was comical, joyous, and laughed with the stars of the show rather than at their expense. It’s a world of difference. And I think it gives neurotypical individuals, a window of opportunity demonstrating that we’re not unfeeling robotic in all the other terms I heard on the dating scene.” Um, I usually hate dating shows, but I love this one. And I think the show’s producers get some stuff wrong, but all in all, I’m just thrilled to see more disability representation in television, especially with dating.
Alyssa Galiney, Relationship Manager:
I think for me, ’cause like you said, you don’t like typical dating shows, right? And I think the reason that we don’t like typical dating shows is because there’s no humanity, right? And to a certain extent with 90-Day Fiance and The Bachelor and Love in Paradise and all of these, it is phony. Like to a certain extent, you only get to a certain point where it’s not authentic anymore because you want ratings or you need a, you need a plot in a story. So we all know that reality TV is not really reality, whereas this felt a little more documentary in nature, which I think is also why, you know, it felt more relatable for, you know, anybody and it felt know less guarded, I would say right less.
Abby Rose Esposito, Marketing Specialist:
Yeah. Because many of the relationships didn’t work out. You could tell that it was not — like the producers weren’t making things happen. They were really just, I mean, they were like setting people up, um, and making the connection in a lot of situations. I mean, they weren’t always either, …
Alyssa Galiney, Relationship Manager:
Didn’t people meet on dating apps too, like on the show?
Abby Rose Esposito, Marketing Specialist:
Yeah, yeah, yeah. I think that they, yeah, you’re right. There were some dating apps and then there was the, um, there were a couple of the like speed dating events. Right. And yeah, you could just tell, and also the people that were on the show seemed like they really wanted to be on the show, especially for the people that came back for season two, they were all so excited to be back. And you could tell that like, that was really their choice. It was not for whatever. I mean, I, I have no idea what they get for being on the show other than trying to meet people, but they seemed like they were all really genuinely excited to be back meeting people and being on the show.
Alyssa Galiney, Relationship Manager:
Yeah, and I think like from what I’ve gathered a little bit from, you know, scrolling socials, like Michael has an Instagram and he has an agent. So I mean like maybe he loves working in entertainment, so good for him. Right. He gets to, you know, pursue that potentially.
Abby Rose Esposito, Marketing Specialist:
He could! He is the best and I would watch him in anything. Right.
Alyssa Galiney, Relationship Manager:
But yeah, I just, I don’t know. I just think it’s very, it’s just very relatable.
Abby Rose Esposito, Marketing Specialist:
Yeah. Because it’s not — the dates aren’t perfect. Because even in neurotypical, dating scenarios, dates are never perfect. Especially first ones. They’re so awkward. Right. <laugh>
Alyssa Galiney, Relationship Manager:
Everyone has ups and downs and people you think are gonna be a match and then they’re not, and especially in modern dating where most people are dating on a dating app, you know? Yeah. So we all kind of have those most people, I would say at this point, um, in modern dating have that experience of even having to get on a dating app and, and talk to strangers and you’re gonna have ones you connect with the ones you don’t and you really don’t know until you meet up sometimes. And um, I think that’s what made it, you know, like I said, had a humanized element to it.
Abby Rose Esposito, Marketing Specialist:
Yeah, for sure. I would definitely recommend watching it. Like I said, this is my favorite of our list.
Alyssa Galiney, Relationship Manager:
And I need more of Ronan and Katie.
Abby Rose Esposito, Marketing Specialist:
I know! Ronan and Katie are my favorite.
Alyssa Galiney, Relationship Manager:
They were my favorite too. <laugh>
Abby Rose Esposito, Marketing Specialist:
I really hope they, I don’t know if they have more seasons coming out. I would hope so. It seems to be a hit.
Alyssa Galiney, Relationship Manager:
I think there will be. If I had to guess.
Abby Rose Esposito, Marketing Specialist:
<laugh> yeah. Okay, cool. So now, I wanted to talk about Peanut Butter Falcon. Have you seen Peanut Butter Falcon?
Alyssa Galiney, Relationship Manager:
I did not. What is Peanut Butter Falcon about?
Abby Rose Esposito, Marketing Specialist:
So this is a movie that came out in 2019. Um, back then I bought it on Amazon, but it is available on Hulu now. It might have been then too, but I didn’t have it yet. Um, it’s about a 22 year old man named Zak, who’s played by Zack Gottsagen. I don’t know if I’m pronouncing that right. Um, but he has Down syndrome and he’s living in a nursing home in the beginning of the movie with people that are like four times his age. And so he’s pretty disappointed and is like also disappointed that he doesn’t get to pursue his dreams. So he runs away. He escapes the nursing home to pursue his dream of becoming a professional wrestler. And he meets Tyler who is played by Shia LeBouf. Um, and Shia LeBouf is a thief on the run and they end up becoming good friends. And it’s a lot more interesting than that, but I’m not gonna say anymore so that I don’t give anything away, but I also really loved that one. I definitely recommend watching that too.
Alyssa Galiney, Relationship Manager:
Check that out for sure. Um, when you told me that he was living in a nursing home, I was like, where’s the self-direction program, right? Read more my blog on self direction on the medisked.com website.
Abby Rose Esposito, Marketing Specialist:
That’s right. Yes. It is really interesting. Um, they do touch on that a lot in the movie because someone from the nursing home who Zak is really close with, um, but she’s one of the direct support professionals. She comes, looks for Zak while he, after he has escaped. And she tries to get him to come back to the nursing home, even though he’s like, I do not want to, I hated it there. And she knew that it was wrong for him too, but she was doing her job and trying to get him to go back. Um, and eventually Zak and Tyler convince her to stay out there with them, um, while they are on their journey. And it’s really fun.
Alyssa Galiney, Relationship Manager:
All right. I’ll have to watch that. Normally I’m not too into Shia LeBouf, I’ll be honest, but uh, maybe, maybe I’ll give him another chance.
Abby Rose Esposito, Marketing Specialist:
<laugh> I think he does a really good job in this, I think. Okay. He also, yeah, I mean, like he plays a character who clearly knows nothing about Down syndrome and just doesn’t really care, but then he grows to have more empathy and grows to really love Zak genuinely and not in a way that a lot of movies portray people with Down syndrome. Like it’s like a genuine love and friendship between them.
Alyssa Galiney, Relationship Manager:
He knows no other other way. Cause he knows nothing about it, right?
Abby Rose Esposito, Marketing Specialist:
Yeah. From what I found online, it seems like most of the IDD community is also in consensus that this movie stands out in it’s ability to portray depth in Zach’s character. Rather just showing all the stereotypes of people with Down syndrome. Um, but yeah, it’s really funny. It’s heartwarming and I like it.
Alyssa Galiney, Relationship Manager:
Alright. I’ll put the top of my to-watch list. Hulu you said?
Abby Rose Esposito, Marketing Specialist:
Yes. For sure. Atypical. I have a lot to say about this one. So if you don’t know what Atypical is, it’s a Netflix show that had four seasons, which I watched and didn’t realize that there were going to be no seasons after four. I looked up when season at, during the last episode I was like, this feels really like it’s ending. I looked it up and it is, no, it’s not going back.
Alyssa Galiney, Relationship Manager:
I have not watched the last season yet. I’ve seen the rest of the seasons.
Abby Rose Esposito, Marketing Specialist:
Okay. I’m interested to hear what you think because this is another one that got really mixed reviews among the autistic community. Season one, especially got a lot of backlash for representing Sam. Who’s the main character with autism as a white cisgender straight intellectually gifted teenage boy with a total lack of human empathy, which enforces a very common stereotype of people with autism. Um, the actor playing Sam, whose name. I also don’t know how to pronounce. It looks like Keir Gilchrist? Unsure. Sorry. <laugh> he is neurotypical. So that was another big, um, controversy. When the show started, there’s also concern that some of the comical scenes might make its viewers laugh at Sam rather than with him. But I also, and from what I found online that the show’s producers definitely improved the show, starting with season two. They, they took the feedback to heart. Yeah. They hired an autistic author, David Finch to serve as a consultant for the show. They hired more actors on the autism spectrum. And season two, this focus is more on the rest of Sam’s family struggles rather than implying that Sam’s autism is the cause of their family turmoil. When I first started watching it, I didn’t care for it. Not only for the reasons already mentioned, but I also thought that the actors and the writing weren’t very good <laugh> um, but I honestly decided to stick with it purely for this podcast. Um, but then I ended up getting really into it by the second season and watched the whole series in a couple weeks. And all of a sudden it was over <laugh>
Alyssa Galiney, Relationship Manager:
That’s fair. I mean, I told you off, off the podcast, the reason I started watching Atypical is because I knew one of, one of the guys, that was in one of the episodes. So I was like, and he was promoting it on his, you know, Facebook and his social. So I was like, oh, I gotta check this out. Um, so I did, but, um, but I have to, I have to finish it up still.
Abby Rose Esposito, Marketing Specialist:
<laugh>, that’s so cool. Back to self-direction and like we were talking about earlier, I liked that Sam’s mom struggles to let her child spread his way, which is really common for all mothers, but she eventually learns to trust him to make his own choices. I honestly don’t remember if that happens more in season four or where you, I mean, it all blended together. I watched it so fast.
Alyssa Galiney, Relationship Manager:
<laugh> I, I understand that. Yeah. I think, I think it’s in it’s it’s starting to develop, you know, more and more across the span of the series for her. So it’s definitely her character growth and her character arch.
Abby Rose Esposito, Marketing Specialist:
Yeah. Her character is interesting at first. I really hated her <laugh> but she grew, she grew on me <laugh> I also love his sister because Casey just treats him like her brother. Like it’s not a, a, doesn’t make it a whole thing that he’s autistic.
Alyssa Galiney, Relationship Manager:
Right. It’s just a part of him. Not all of him.
Abby Rose Esposito, Marketing Specialist:
Yeah. I like it.
Alyssa Galiney, Relationship Manager:
Actually. You kind of triggered my memory when you were talking about, um, you know, that the lead, he doesn’t have autism, that was part of the criticism. It reminds me of that movie. I don’t know if you saw, cause it’s super old, Adam? With Hugh Dancy.
Abby Rose Esposito, Marketing Specialist:
I forgot about that. Yeah.
Alyssa Galiney, Relationship Manager:
Hugh Dancy, who plays someone with Aspergers and I’m don’t believe he has Aspergers. Um, and I think that was part of the like mixed reviews that, that movie got. Um, yeah, that makes sense. <laugh>
Abby Rose Esposito, Marketing Specialist:
I would love to watch that again. I watched that. I mean, I saw that when I was in like, I mean, I think it came out when I was in high school.
Alyssa Galiney, Relationship Manager:
Was 2009.
Abby Rose Esposito, Marketing Specialist:
Okay. Yeah. So yeah, I was in high school and I, I mean, I thought it was great then because I, I mean, I have a cousin with Asperger’s, but I, other than that, wasn’t like involved in the IDD community. So I had no sense of what is a good way to portray people with Asperger’s. So I would love to watch that again.
Alyssa Galiney, Relationship Manager:
And see, yeah, I would too. I remember liking it, like really liking it when I, yeah. When I first watched it. Um, yeah. Of the more critical ones, I guess, now that we, we work in the space, it’d be interesting to revisit. Yeah.
Abby Rose Esposito, Marketing Specialist:
Have you ever seen the ring or what’s it called? Ringer? The Ring?
Alyssa Galiney, Relationship Manager:
The Ringer? Isn’t that the one with Johnny Knoxville?
Abby Rose Esposito, Marketing Specialist:
I haven’t watched it. I assume that it’s awful.
Alyssa Galiney, Relationship Manager:
Uh, me too. I mean…
Abby Rose Esposito, Marketing Specialist:
I just assume. I don’t actually know.
Alyssa Galiney, Relationship Manager:
But if I did watch it, it was like literally when it first came out years ago, but I don’t, I don’t know. I never was really into that, like, whole Johnny Knoxville..
Abby Rose Esposito, Marketing Specialist:
Yeah no. I just can’t imagine that it is super respectful, but I could be really wrong. So who knows? We’ll have to check it out and come back. <laugh>
Alyssa Galiney, Relationship Manager:
Next time, a round two podcast. <laugh>
Abby Rose Esposito, Marketing Specialist:
Yes, Round Two. So the last two that I have are both documentaries. The first one is Crip Camp: A Disability Revolution. This is a nearly two hour documentary and it was executive produced by I Barack and Michelle Obama. And it’s available on Netflix. It’s about Camp Jened, which is a groundbreaking summer camp in the Catskills, which galvanized a group of teens with disabilities to help build a movement, forging a new path toward greater equality. I really loved this one. I thought it was really interesting.
Alyssa Galiney, Relationship Manager:
Yeah. I learned a lot from it. Just about the, of the space. Um, yeah. You know, I think the thing that was the most shocking, I guess, was like kind of towards the end of it when they were like, and you know, the disabilities act was passed in 1990 and I was like, oh, so like I was alive. <laugh> yep, yep. And that happened and it hasn’t been all that long. Yeah. And that’s shocking because I, it feels like it should have been such a long time ago and it was so long coming and so hard fought once you watched the documentary, all we went through. Yeah, yeah.
Abby Rose Esposito, Marketing Specialist:
That one’s a really good one. It’s really interesting. It has, they interview a ton of people that went to Camp Jened, which is really cool. And they talked about how life changing it was and how it led them to start a movement. So it’s really cool.
Alyssa Galiney, Relationship Manager:
I think it’s cool because it was so close to us. <laugh> yeah. Like, the Catskills and then it was crazy that they all kind of like went to the west coast and started living in San Francisco and then kinda, you know, built the life there. So it’s like coast to coast. <laugh> yeah.
Abby Rose Esposito, Marketing Specialist:
I also loved that so many of them are still in touch and like still work together and stuff.
Alyssa Galiney, Relationship Manager:
Mm-hmm <affirmative> That’s really cool. Yeah. That one was just like a very good educational documentary for like, if you know, like baseline nothing <laugh> yeah. Like we knew we, I, I think you, and I knew the basics, but we didn’t, we didn’t know the people by name, you know, or we didn’t hear, you know, get their, their interviews, which this gave us the, the ability to do that, you know, listen to them in their own words, explain how they started a revolution and brought about massive change. Yeah.
Abby Rose Esposito, Marketing Specialist:
Yeah. Agreed. Have you ever seen the one about Willowbrook?
Alyssa Galiney, Relationship Manager:
So I’ve seen bits and pieces. I, I don’t think I’ve ever seen it, like from start to finish. Yeah.
Abby Rose Esposito, Marketing Specialist:
So there are different versions…
Alyssa Galiney, Relationship Manager:
Like Geraldo Rivera’s clips I’ve seen.
Abby Rose Esposito, Marketing Specialist:
Yeah, yeah, yeah. So there was one that came out that’s called unforgotten 25 years after Willowbrook. Um, and that one has a bunch of clips from that original documentary, but also interviews people and their families who were at the Willowbrook Brook institution. If you don’t know what I’m talking about. Willowbrook State School was a state supported institution for children with intellectual disabilities located in the Willowbrook neighborhood on Staten island in New York City from 1947, until 1987. The school was designed for 4,000 individuals, but by 1965, it had a population of 6,000. The Unforgotten: 25 Years After Willowbrook is a one hour documentary and it’s available to view for free on YouTube. So, um, it’s extremely important and powerful, but it’s also extremely to disturbing. So viewer discretion is advised.
Alyssa Galiney, Relationship Manager:
Um, that’s a hard one because just so much trauma, um, and abuse, uh, happened. I mean, I think that’s something MediSked pushes that history, you know, that we learn in our bootcamps all about Willowbrook. So we have a very, a very like deep understanding of what not to do and why we have again had this revolution of change and how it needs to be person centered and, and, and, and all the things they’re all very important. Um, so I think we have, you know, me does a really good job of teaching people who don’t have that knowledge about Willowbrook in particular. Yeah.
Abby Rose Esposito, Marketing Specialist:
Yeah. Uh, I was embarrassed that I didn’t know what it was, um, before coming to MediSked. So then when …
Alyssa Galiney, Relationship Manager:
You didn’t know about it as a com major? I feel like we learned about it in com and like my marketing, or like one of my crisis communication classes. Like I knew baseline what it was, but I didn’t know the details.
Abby Rose Esposito, Marketing Specialist:
No, I, I was embarrassed that I didn’t know what it was. Um, so then, um, our, …
Alyssa Galiney, Relationship Manager:
That happened when we think about it, all a long time ago, quote unquote, right. You know, like what, late seventies, early eighties. Yeah.
Abby Rose Esposito, Marketing Specialist:
It closed in 1987, which is crazy closed in 87. That is not long ago.
Alyssa Galiney, Relationship Manager:
Well like, I mean, if you think about it, we still have, have people, again, like alive who are receiving services, like designated as like Willowbrook, you know, survivor essentially, um, New York state. So, but
Abby Rose Esposito, Marketing Specialist:
Yeah, it was like in my first month of working at MediSked that I watched this because I was embarrassed. I didn’t know what it was if you or someone, you know, is just getting involved in our, in history or if you’ve just never seen it. I mean, it’s a great resource for understanding the importance of home and community based services and deinstitutionalization. Cause it’s one thing for us to talk about and it’s, at least for me was a totally different ballgame to see the footage. I mean, it was horrible. Yeah. Just really messed up. And obviously not all institutions were that bad, but it was the worst case scenario, but it still was not ideal. Right.
Alyssa Galiney, Relationship Manager:
Again, you’re still taking somebody in, you know, putting them in an institution where like everything is decided basically for them and they can’t do, you know, the things that they wanna do. Yeah. Um, you know, in, in a safe space, whereas like you said, home and community supports enable that and self-direction enables that. So you can really have complete, you know, driver’s seat <laugh> control over, you know, your life, another random TV show that this, that kind of triggered off of is, um, have you ever watched Call the Midwife?
Abby Rose Esposito, Marketing Specialist:
I have not.
Alyssa Galiney, Relationship Manager:
Okay. So Call the Midwife actually takes place in London in like the fifties, but they have a actor on the show that has Down syndrome. And part of the storyline, even like for the show was his like guardians thought the best thing that they could do for him was to institutionalized him and he hated it at the institution. And then they brought him home and how he thrived living in the community because on call the midwife, the whole like area that they lived in was just this big community. So like his, you know, his guardian, I think it’s like his cousin or something, she owns, you know, the, the dress shop. So, and he helped out with, you know, working there and he helped his, her husband, you know, like work at the church cause it’s around Midwifes and, um, you know, nuns who also were midwives, with the church being kind of the focal point of the, the community. So he would help out at the church cuz he worked at the church and just, um, you know, even back then that wasn’t the normal choice. I don’t think is like the point that they kind of drove home is that most people did institutionalized, but he was just unhappy that they couldn’t, you know, do it to him. So they took on, you know, bringing him home and making sure he was happy and they depicted it in the show. And I think that’s really cool about the show.
Abby Rose Esposito, Marketing Specialist:
That is so cool. I can’t believe I haven’t heard of it. I’ll have to watch it.
Alyssa Galiney, Relationship Manager:
If you like Downton Abbey because it’s kind of period, you know, it’s a period piece. You’d probably like a lot.
Abby Rose Esposito, Marketing Specialist:
Nice. Um, well that’s all I’ve got,
Alyssa Galiney, Relationship Manager:
That’s it from my end.
Abby Rose Esposito, Marketing Specialist:
Sweet.
Alyssa Galiney, Relationship Manager:
Always looking for new recommendations. So if anybody anybody’s listening and have other ones, please email us <laugh>
Abby Rose Esposito, Marketing Specialist:
Yes. Yeah. I will put our emails in the show notes so that you can let us know more movies and shows of course, but also we’re always looking for recommendations for books and podcasts and true, whatever other media you come up with that I didn’t just think of. Um, so if you have any suggestions for us, definitely reach out and thanks for listening. This was fun, Alyssa. Thanks for doing it with me.
Alyssa Galiney, Relationship Manager:
Can’t wait to do it again. Thank you for having me on the podcast.
