Episode 15: Rawan Tuffaha Unveils the Artistic Journey of ASD Band

Everything You Know About Disability Is Wrong Podcast

May 14, 2024

Episode 15 Show Notes

In today's episode, your hosts Lily Newton and Erin Hawley have a heartfelt conversation with our guest, Rawan Tuffaha. Rawan is the lead singer of the ASD Band, a group composed entirely of autistic musicians, which shines a light on talent within the autistic community. Besides her music career, Rawan is an advocate for autism acceptance and disability employment, challenging misconceptions and pushing for more inclusive practices.

Join us as we delve into Rawan's journey, from forming the ASD Band to her academic pursuits at Metal Works Institute, her experiences with the documentary about her band, and her thoughts on the misconceptions people often have about individuals on the autism spectrum. We'll also hear about her challenging yet rewarding experiences managing school, autism, and her music career, including her exciting upcoming album, "Almost Flawless."

This episode is not only an exploration of Rawan's personal and professional life but also a broader discussion of the challenges faced by individuals with disabilities as they transition into adulthood, particularly in accessing employment and continuing to receive support.

Stay tuned as we celebrate the exceptional contributions of individuals like Rawan and discuss how organizations like Easterseals are paving the way for full access, equity, and inclusion for people with disabilities and their families.

Connect with Rawan on Instagram.

Transcript

Jennifer (Music):

Oh my goodness, you are such an inspiration.

Jennifer (Music):

Wow, you really are.

Jennifer (Music):

You're so strong. Can I pet your service dog? Ugh!

Jennifer (Music):

1, 2, 3, let's go. We're artists, parents, teachers, good guys, bad guys, students, leaders. I'm not your inspiration. No, I believe who I am. Got my own expectations that don't fit into your plans. I'm not your sad story, so I wrote it in this song. Everything you know about disability is wrong! Everything you know, yeah, everything you know about disability is wrong!

Lily Newton:

Hey, listeners. Welcome to another episode of everything you know about disability is wrong. Awesome. Today on the show, we have Rawan Tuffaha. She's the lead singer of ASD Band, which is an amazing band with 4 musicians who happen to be autistic. We are so excited to have you on the show today, Rawan. Before we get into our questions and our interview, we'll do our audio description, which is an accessibility feature we really like to have. This is Lily speaking.

Lily Newton:

I am a white presenting woman with brown hair and green eyes. I'm wearing a black shirt and a necklace that I fidget with often. On the screen, there's a purple background behind us. Erin, do you wanna give your audio description?

Erin Hawley:

Hi. This is Erin. I'm wearing a white shirt, and the blue shirt is blue and white. And, I have red hair and blue eyes, and, my bedroom is behind me.

Rawan Tuffaha:

Hello. I'm Rawan Tuffaha. I have, you know, black, and blackish brown hair, like, you know, dyed in a curly, bleachless ombre effect. And, I'm wearing a lavender turtleneck with white and gray on it.

Lily Newton:

Rawan also has really gorgeous eye makeup on that I talked Yeah. Before we started recording it.

Rawan Tuffaha:

Makeup are so sexy.

Lily Newton:

I didn't know that. That's so cool.

Rawan Tuffaha:

Graduated from Sheridan College before COVID, you know, in class of 2019 for may makeup and me for media and creative arts.

Lily Newton:

Oh, that's cool. And that's such, like, an incredible skill to have. The person that I make movies with does hair and makeup as well. And, like, her having that skill set is so incredible. I'm pretty bad at makeup, so I always am jealous of people who are

Rawan Tuffaha:

I hope I could do yours one day.

Lily Newton:

Oh, that's a dream. That'd be so fun. Ron, you are having a very exciting year. Do you wanna just tell our listeners a little bit about yourself and what you've been

Rawan Tuffaha:

Okay. Currently, I am a student at a Metal Works Institute, you know, for a college, for music, and I am studying, you know, the music performance program. And I will graduate in August. That's incredible. I And Sorry. I'm also enjoying, you know, that I'm making friends, with my classmates and getting along with the professors too.

Lily Newton:

Oh, awesome. We'll definitely get into that. I wanna hear about your college experience in general. And you're also the lead singer of this incredible band that So the band has been together for a little bit. You have music. Listeners check out their music. It is awesome, and it's available on Spotify. I think it's available on pretty much all streaming platforms.

Lily Newton:

Right? And if you're listening to this pop podcast, you should pop over and listen to a few of their songs. They're really incredible. But on top of just making cool music, right now, there is a documentary that was just made about your band. And, through Easterseals, we've actually been doing showings of it, and, I think it'll officially come out next year. So that is incredibly exciting. When did that process start?

Rawan Tuffaha:

Well, we first started, you know, the documentary in 2020. Like, you know, first, we did, like, we were initially supposed to have, you know, a performance, concerts, but that got canceled because of COVID 19. So what happened was we had a documentary instead and, you know, we just, worked on original songs. And then 2021, you know, it got released. 2021, we had our first album, and we had a documentary on it to to boot. It was really great. And, you know, I just, wish we could have the I wish COVID never got in the way when it happened because we Yeah. We work really hard on what we love and what we do.

Lily Newton:

Yeah. That's incredible, and what a great pivot to, you know, if you couldn't perform live to get this documentary made and get your music kind of out there and have people know your story. Because your band's music is incredible, and the story of just your band's experience is really incredible, which we'll get into further in the interview. Erin, you wanna ask our namesake question?

Erin Hawley:

Yeah. Sure. So our podcast is called Everything You Know About Disability is Wrong. And that's, like that title is based on art our experience of people making incorrect assumptions about us. So I'm gonna ask you, what do people get wrong about you and what and your disability?

Rawan Tuffaha:

Alright. I think that it's, their perception of me. Like, they first thought that I was bratty or entitled, when really that is not true. For me, I don't respond immediately because I wanna think about what I wanna say first and how I wanna go about, you know, situations.

Lily Newton:

Yeah. Oh, I so relate to that. I think that's such a common autistic women experience, especially, like, where because a lot of people still think that, like, only boys are autistic. I don't think they expect women to. And, like, just growing up, I always felt like people thought that I was, like, rude or bratty. I got bratty all the time. Or that, like, sometimes people would think that I thought I was better than them. And it's like, I I don't I never thought that.

Lily Newton:

I don't know where you got that from. But I think it's just because of, like, maybe that I think and talk a little different. So I totally relate to that experience. And it's hard to be, like, trying so hard to be nice and then to be told that you're being, like, bratty. Like, that's such a hard thing to deal with. This experience has, like, helped you to better share that with the world and share with others, not to kind of assume that you're being rude just because you're taking your time answering?

Rawan Tuffaha:

Like, I think that, you know, that they should stop and think also just like we are too instead of just, you know, coming to the wrong realization and misunderstandings in the way.

Lily Newton:

Yeah. I think being misunderstood is such a large part of, I mean, the human experience overall, but especially the autistic experience and probably the disabled experience in general. Well, thanks for sharing that. And I hope that people start to just understand not to make immediate assumptions about people. And Roan is part of the really cool video series that we're working on at Easterseals right now, which is, an autism acceptance and understanding video. And I can't wait, listeners, for you to see those. And I think that they will also help with people making less assumptions about us. So let's get into ASD band a little bit.

Lily Newton:

I wanna talk about it. How did how did your band form? How did you

Rawan Tuffaha:

Well, first, we performed alongside, Roger Hodgson from Supertramp for Jake's house's campaign, give a little bit, in 2019 of autism awareness in April. I really loved every minute of it, and there was an orchestra behind us and everything. And then after after that, it was our manager, Andrew Simon, who got us to form a band together, seeing his seeing the potential that we had on that day of, and it went from there. Like, you know, first, you know, we had we have had our setbacks, you know, with the, you know, COVID in the way, some events happening, some not. But, you know, we we still managed to, you know, go through things together. We, you know, worked hard to follow our dreams. 1st, we sang covers of songs, but then we actually, it evolved into original songs in 2021 on you know, from our first EP called Fireflies.

Lily Newton:

That is awesome. Wow. Andrew Simons sounds like your band's own version of Simon Cowell. Like, he he brought you all together. That's so cool. Cool.

Rawan Tuffaha:

Yeah. But albeit it's in a positive way. Like, he's the he's the huffle class of the our of the of our group, in addition to my other bandmate, Ron, like, in personality wise.

Lily Newton:

Oh, that's wonderful. Yeah. Like, you know, while

Rawan Tuffaha:

I love that. While I'm Raven Club, my and Spencer's at Gryffindor, and so is Jackson.

Lily Newton:

I love that. Seems like a lot of you have Harry Potter interests, which is Well, I'm

Rawan Tuffaha:

I'm more a die hard one if you ask me.

Lily Newton:

Awesome. Very cool. Ravenclaw is a good one. Whenever I, whenever I took the tests, that's the, that's the house I would get. I will say I was, I was a teenager in the 2000 tens, so I was a big Twilight girl. I didn't get as much into Harry Potter because I was obsessed with

Rawan Tuffaha:

Harry Potter. In middle school, and then I got addicted. And then I wanted to be Slytherin, but it wasn't. So I'm like, now I'm just happy for better one now upon seeing what the personality traits value.

Lily Newton:

Oh, yeah. Absolutely. There is something about, like, relating to characters' values and traits. Like, it's so fun when there are Harry Potter is a great example just because of the houses, like, that you could sort yourself into. I think that that's kind of it's always fun to align yourself with characters. And is a is that's something I do with my autistic friends, where every time we'll watch a show, we'll we'll all be like, you're this one. You're this one. You're this one.

Rawan Tuffaha:

Like and when I play Genshin Impact, I just, you know, compare other people's personalities to these characters or animes.

Lily Newton:

Yeah. Yeah. I think fiction is really helpful for anyone who has kind of a neurodivergent experience to utilize fictional characters to be like, okay, how does this help me make sense of my reality? I love that. That's so cool. So when did you start playing music?

Rawan Tuffaha:

Well, I first started, you know, playing music, you know, through a toy piano. And then, eventually, you know, I my mom got me a keyboard, and then I learned playing by ear. And this was before I even knew of professional training. And then after that, my mom enrolled me in piano lessons. Like, I know by ear rather than by note. And, and then also, like, my parents first thought that I was deaf, but thankfully, it wasn't true because they heard me humming My Heart Will Go On by Celine Dion, and she's also another music influence.

Lily Newton:

Oh, that's wonderful. So, so you had you were humming and singing before you were speaking?

Rawan Tuffaha:

Yeah. That's right.

Lily Newton:

Wow. That's awesome. That's really cool, and I I feel like maybe there's parents out there who have kids who are like non verbal at a very young age that could probably use music to help. Because I have I have another friend who, he didn't speak until he was 5, but he would sing from the time he was 3 to 5. He could sing things. So he would, like, sing his responses. That's really interesting. Okay.

Lily Newton:

I wanna pause and talk about that you said you play music by ear.

Rawan Tuffaha:

Yeah.

Lily Newton:

So you don't use sheet music or anything? It's just it came naturally when and then I hear upon chord changes or changes in semitones, so in in on the piano.

Erin Hawley:

Wow. It's awesome.

Lily Newton:

Yeah. So you hear that, like, you can hear it.

Rawan Tuffaha:

Like, you know, I love the, you know, playing sometimes, like, you know, I also play ukulele. And, you know, I play it, you know, so that I can come up with melodies too, and piano has also been another asset, Well, my my style of songwriting, it's like a nonfictional book, and it and it always comes from the heart. Like, you know, the good or bad experiences, I use it to write, and it's, like, my creative outlets.

Erin Hawley:

I know that. It's great.

Lily Newton:

I really liked the way you phrased that, like a non fiction book. That makes sense with how with the songs I've heard of your band are very, like, personal experiences.

Rawan Tuffaha:

Yes, ma'am.

Lily Newton:

And, especially I've just I really enjoy listening to your band sharing the songs that are so specifically about the autistic experience Yeah.

Rawan Tuffaha:

Because Like, Fireflies was my very first original song. And Yeah. And I and it talked about, like, you know, overcoming the stigma of autism and and how it it differs from person to person because, you know, it's not a one size fits all kinda thing.

Lily Newton:

Yeah. Fireflies is this sort of anthem of, like, acceptance and refusal to be underestimated. Listeners, there's, the lyrics featured heavily in that song are were different, but not less. And that I was just so moved the first time I heard that song because there's the, I think it's the bridge. I don't know music that well, but it's there's the section where you're talking about, like, the lights are too loud, and you're touching me, but I don't want that.

Rawan Tuffaha:

That's a wrap. But yeah.

Lily Newton:

Yeah. And it's it's so, like, honest and just the real truthful experience of being autistic, and I think that that is really incredible. We had, we've had a couple guests on here, but Lachi and Galen Lee specifically have talked to us on this podcast a lot about the power of, using music to help people better understand disability culture, and I think your music does that especially. Fireflies Fireflies and then, the song Masquerade, which, again, one of your bandmates wrote. Yeah. Just really incredible, raw honesty about the autistic experience. And I think that music is such a good way to get people to better understand you

Erin Hawley:

Mhmm.

Lily Newton:

Rather than, like, just talking at them. Sometimes music is the best thing. Well, that's incredible. I'm really glad that you use this ability. I mean, you you've taken this talent that you have as someone who your brain makes music on its own. That's incredible. And you've you've taken that and become really an advocate with your music. It is, autism advocacy.

Lily Newton:

That's really incredible. So with that in mind, what does autism acceptance really mean to you?

Rawan Tuffaha:

Okay. I think what autism acceptance is that, you know, people, you know, are more open, and they're not really closed minded when it comes to this. I think that they're I want them to be understanding and instead of, you know, hiding it like the plague, I think that, you know, that audism should be celebrated instead of masking. Because, sometimes I just don't like when certain situations, you know, take a toll on us, and we have the we don't know what to do in in certain things.

Lily Newton:

Yeah. Absolutely. I think that that's just a theme we come up on this podcast a lot of, this, like, this kind of desire that this world has had for so long to just really exactly what you said, hide people away like the plague. Like, whether it's physical disabilities or, like, neurological, like, autism, things like that, there is kind of this, like there used to be this movement of, like, just hide things away. And I do think that now we're starting to have real representation in music, in TV shows, in books, and say that, like, no. We're here. We're gonna take up space, and there's no need for us to hide.

Erin Hawley:

Yeah. And it's like it's very interesting because, like, you have a different disability than I do, but we all have that experience of wanting to not be hidden away. And it's a very a powerful thing when people with different disabilities can have that same experience and advocate together.

Lily Newton:

Well said, Erin. I agree.

Erin Hawley:

Totally. So, Rawan, I saw you on the Kelly Clarkson show, and that was really amazing. And can you tell us a bit about that? How was that experience?

Rawan Tuffaha:

K. That experience with Kelly Clarkson was so amazing, and I really loved meeting her. She is my idol, and she still is. Like, my first song from her that I sang was Breakaway, you know, in my 3rd grade talent show. To meet her was literally a dream come true, and my bandmates love her love her as well.

Lily Newton:

She's literally America's idol, and you're Canadian. She's Canada's idol too. That's incredible. Yeah. That's amazing. She so she she's as genuine as she seems? Like, she's that kind and nice? Absolutely.

Rawan Tuffaha:

She was funny

Lily Newton:

Oh, that's so sweet.

Rawan Tuffaha:

Smart and humble and and really, you know, honest too.

Lily Newton:

That's so wonderful. And I feel like it's just really cool that she's, having a lot of different I think I've seen that she's had a couple different autistic advocates on this month, for autism acceptance. That's really cool to see kind of like famous mainstream neurotypical people taking time to highlight us and the cool things we do. That's awesome. Being on Kelly Clarkson and with the having this movie made and people watching your movie has probably brought a lot of new attention. How have you handled this new attention and, like, growing on social media, things like that? How's that been?

Rawan Tuffaha:

Well, I am who I am, and I don't think that I will change. And I'm also thankful to Andrew for that. I like, in addition to my parents too, who taught me, like, you know, great positive values, and, this youtuber called, Dhar Mann, like, and like his YouTube, skits, talk about positive valuable lessons. Like, this one, the skits I saw, like, you know, with this the moral of the story was it was called the entitled influencer gets canceled, and the moral of the story was fame is fleeting, so you must be humble and modest and not forget where you came from. And I took that to heart, you know, since then. And he's he's been handling the attention as well. Like, you know, he's opened a lot, and Andrew's opened a lot of doors for us. And we're thrilled for the support and the positive vibes that I'm receiving.

Rawan Tuffaha:

And I also got reached out to by other parents and DM ed on Instagram about it and how they're very appreciative of us as as role models for their kids.

Lily Newton:

Oh, that's wonderful. That's that's gotta feel really good to get messages back.

Rawan Tuffaha:

Yeah. It was great.

Lily Newton:

That's amazing. And I'm so glad that your manager, Andrew, is such, like, a champion for you guys. And that's really wonderful. I think that having someone who is gonna open doors for you and, like, advocate even outside of disability, but just, like, advocate for, like, get this person you wanna hear this person saying you wanna hear this. That's really incredible. And having a a supportive manager, I think, is pretty crucial to being any kind of entertainer. I like what you said about just staying yourself, because you're gonna be you no matter how many people see you.

Rawan Tuffaha:

Yeah. That's so that's literally what I want in myself as well.

Lily Newton:

Yeah. I think that makes total sense, especially, you and I have already talked when we were making the autism acceptance videos. But, talking about, like, masking and overcoming masking, I feel like that must you know, if you've already practiced unmasking and becoming your true self, then maybe it's, like, a little easier to not fall into the traps of, like, becoming this, like, version of yourself to be famous.

Rawan Tuffaha:

Yeah. Like, I did mask growing up, and, you know, during my time in middle school, I did do that. And back then, popularity was all the rage, and it felt like, you know, like, fame was the most important thing, but it's just, you know, it was hard because, you know, I didn't find anyone who I could trust or, you know, it was hard for me to tell who's my true friend or not because and I didn't know when I was being manipulated either. Like, you know, I naively assumed that I would be famous off, off this thing. Like, you know, sometimes I didn't know that they were manipulating or or bullying like, you know, with this example making me sing on demand, I naively assumed will I be famous off it. But it wasn't, and I was wrong. And and my mom helped me open my eyes to the truth. And

Lily Newton:

Shout out, mom. Yeah. That's a someday when we make merch for this podcast, that's gonna have to be something because we say that in, like, every way. Shout out moms. They are both Erin and I both have incredibly supportive mothers who have like also helped us. Like Yes. Shout out, mom. I'm just man, I think that that you just covered something that a lot of autistic kids go through, and I'm sorry you went through it.

Lily Newton:

That, like, feeling of thinking that you're making friends or thinking that you're kind of part of, like, a joke or something and then realizing you're kind of the butt of it. Like you say, people making you sing on command. I definitely experienced things like that.

Rawan Tuffaha:

You too. You did?

Lily Newton:

Yeah. I I used to be able to memorize things really, really easily, and so I was I did, like, theater and stuff growing up, and I would memorize, like, long chunks of text, and people in my grade would kind of be like, Lily, say this, and then I'd recite it. And I thought that it was I thought we were friends. Like, I thought that that was a cool thing that was happening. Like, they were they were, like, thinking that my skill was cool.

Lily Newton:

That is what I thought, too. Yeah. Because why are people so mean? Like, why I I think that, you know, you assume good intentions, and I thought that it was, like, oh, they think I'm really good at this, so they wanna see me do it.

Rawan Tuffaha:

Honestly, like, I thought it's, I also thought that, you know, not just, like, I the only reason, like, popularity used to matter to me, but, you know, I wanted to to be popular but respected with loyalty. And there's not many, you know, I just wanted to break out the stereotype of the queen bee for that matter and just be myself.

Lily Newton:

Yeah. I totally relate. And I think that when you're a teenager, it just and especially, like, shows aimed at TV and stuff, they really do stress, like, popularity, and, I am grateful for when I finally realized that, like, it's way more important to, just as you said, like, find friends who are gonna be loyal and caring and who are gonna, you know, I it was it was eventually my friends, my actual friends who told me like, Hey, when those people are having you recite that, like, they're, they're making fun of you actually. Like they're not it. Like they're not they don't think it's cool. And I remember being like, what? Oh my gosh. Like, I'm so glad that you told me. And I think that it is really important to find friends who are going to be loyal and caring and are going to just like, watch out for you.

Lily Newton:

Especially when you are someone who it seems like you and I have this in common that, like, I assume the best intentions from everyone. And that's not always a good thing because not everyone

Rawan Tuffaha:

Yeah. Like, sometimes I I you mean, like, when you said memorize things, did you mean like, like, what, scripts?

Lily Newton:

Yeah. Scripts or, like, I used to be able I used to love to memorize, like, commercials. Shows for me. Like, quotes. Like, I would hear oh, yeah. Yeah. Yeah. Or and I try to, like, use them in everyday

Rawan Tuffaha:

Oh, yeah. And, like, you know, researching things too.

Lily Newton:

Oh, yeah. And that was definitely a thing that I people would be kind of harsh about would be, like, kids would be like talking about a certain subject, so I'd be like, oh okay, I'm gonna go really research that, and then I'd come back with like a 1,000 facts about it, and they'd be like, I don't know.

Rawan Tuffaha:

Oh, like too much of it, yes?

Lily Newton:

That's too much. Yeah, definitely. For me, that was like boy bands. Like, I got really into boy bands.

Rawan Tuffaha:

Oh, like what? One Direction?

Lily Newton:

I was a Jonas Brothers.

Rawan Tuffaha:

I love Jonas Brothers.

Lily Newton:

Okay. I love him still. I actually

Rawan Tuffaha:

We could meet with them one day.

Lily Newton:

I wish it's a big dream of mine. Nick Jonas has type 1 diabetes. He could come on our show and talk about it. Wait. What? I actually I I want Nick Jonas to come on our show someday even though I'm a Joe girl. I used to be a Joe girl, then it went to, and now I'm a Nick girl, but I'm happy for him and PC day.

Rawan Tuffaha:

I okay. So I'm Indian. When, Nick married Priyanka, I was like, this is the craziest thing that's ever happened in my whole life with my 2 favorite celebrities. But, yeah, I'm a I'm a Jonas Brothers girlie.

Erin Hawley:

She's beautiful.

Rawan Tuffaha:

I know. Right?

Lily Newton:

And so were they. This podcast episode could very easily just become now us talking about the Jonas Brothers. I think that the Jonas this is a real thing. I think that the Jonas Brothers know that they have a large autistic female following because they write a lot of music about, like, anxiety and things like that that was really helpful for me growing up. And now they have so much, like, merch and stuff. I think they know that we'll keep coming back.

Erin Hawley:

So I'm, I'm not super familiar Okay. With the Jonas Brothers. What's, like, your most famous song? Probably burning up. Yeah. Burnin' Up

Rawan Tuffaha:

For you, baby. That one.

Lily Newton:

For you, baby.

Rawan Tuffaha:

I love their I love their rock take on Poor Unfortunate Souls.

Lily Newton:

Oh, same. That was, like I remember when that would play on Disney Channel. Family Chimp for me. Oh, I'd watch it over and over again. It was so cool. Oh, yeah. I forgot you're in Canada. Different different channels.

Lily Newton:

Okay. Yeah. Erin, I think you are you missed that. What was your what was the boy band when you were growing up?

Erin Hawley:

Boys II Men, Backstreet Boys, and Savage Garden. I really like I like Backstreet Boys.

Rawan Tuffaha:

Oh, my nineties live. He's nice.

Erin Hawley:

Yeah. Boys II Men is my favorite.

Lily Newton:

And still those bands walked, so the Jonas Brothers can run. I love the Jonas Brothers. This is a bad thing that I've we've talked we've brought this up because now you've got 2 autistic people on a call talking about a band that they like. We could talk for hours and hours just sharing facts back and forth. I bet. I have a Jonas Brothers tattoo that I got because I like, when I was a young girl, I, like, told myself if I could, like, grow up and be successful and, like, make my dreams come true, I would do that. So when I started to really accept my autism and try to love myself, I got that tattoo as like a reminder of, like, the little girl in me that really loves things. Like, I love that her that person, and I'm not gonna shut her down.

Lily Newton:

Okay. I won't let us talk about the Jonas Brothers the entire episode. But, you mentioned that you had trouble making friends or knowing who were your true friends growing up. Now you're in college, and you said that you have made friends. What has that experience been like in college?

Rawan Tuffaha:

To be honest, you mean, like, in my current program? Okay. Well, as you know, I'm, you know, in Metalworks Institute for music performance in my city, Mississauga, Ontario. And my experience, you know, allowed me to broaden, you know, broaden new horizons, and not just the academic aspect, but the friendship aspect too. Like, you know, in friendships, I was not lucky before, but thankfully, I met great people who are supportive of me and they're not judgmental at all. Like, you know, my favorite moments was also with ASD in addition to that. Like, you know, I'm proud to have, Ron, Jackson, Spencer, and Maury as great friends and stuff. Like, for example, like, you know, Spencer was very supportive, you know, when, you know, after a gig, we we wanted to return from, you know, Cincinnati, Ohio. And then when we went back to the airport, our flight it was our first flight that got delayed and then canceled.

Rawan Tuffaha:

And I was, freaking because I've never handled this before and how what way can I get home because, you know, unless I can teleport? There were no kiosks at the at that airport or, or a person, you know, to, to check us in, on, you know, with the process of starting the, to get in and check-in to the hotel a little not hotel, check-in to the airport to our flight, but we couldn't access our boarding passes, thanks to that. And it was it was pretty difficult, and and he helped me through it. And it it was really great, that he did that too. And, also, as for the thing with my classmates, like, we have, you know, these rehearsals, you know, like, last semester, we did an assignment on, you know, pick, covers of songs and make them different genres than the initial one that was there. Yeah. And, we performed them together. Like, I loved the not just the rehearsals and also the live performance too. Like, you know, and we donate the money proceedings to any charity, and I chose Jake's house, and they agreed to to that.

Rawan Tuffaha:

And sometimes we would go outside of outside of school, we would meet up, like, my favorite, like, I've went to I've went to a nearby restaurant for my birthday, like, near campus, and it was, like, on the after class, we went for the restaurant and, you know, my friends came to that, and it was great. And, you know, my favorite my second favorite was when we went to, you know, my a bass, guitarist, you know, his, for a Christmas party and we exchanged gifts. It was Secret Santa. It was really fun. And I love, what, my secret one got me, and it was amazing. Like, you know, I loved the, you know, not just the lenders, but the night light, that was reindeer shaped and the bracelet charms, you know, and they're, you know, with music instruments and everything. And I'm hoping, you know, I could wear it to my performances, you know, as a luck a good luck charm. Like, when I get it fixed.

Erin Hawley:

Wise.

Lily Newton:

That's really incredible. I love that you had such luck making friends in adulthood and that ASD band has provided you with that. This is kind of a good segue into the next section of this interview where we like to talk about the pillars that Easterseals kind of we are working for Equity and Access in, which is community, health, education, employment, and transportation. You just brought up you just brought up transportation in that you had that experience. How do you manage traveling? I guess you kind of answered that that your your the ASD band, your friends are really helpful for that. But is traveling kind of, in general, stressful for you?

Rawan Tuffaha:

It's just it depends, like, like, you know, the process, you know, like, not that I don't understand, like, you know, sometimes the the checking into, flights process and, you know, going through security and, and looking for the terminal and gate. Like, I like, sometimes I don't, like, you know, understand the government terms of it. Like, so I would have someone ask me, like, you know, tell me and clarify. And, whenever I would, you know, I would ask, like, usually my parents, either one of my parents or or my sisters, they'll go with me to the airport for when we're traveling, you know, for a band thing. And I like having either my mom or my sister with me because they will show me what to do, you know, on finding the terminal, the process. And I don't and, you know, when I landed, I didn't understand the declaration part. Like, declaring, you know, what is it I have with me that I got from US or something. And they would help me with that process.

Lily Newton:

I'm glad you bring all this up because it is a part of travel that sometimes gets missed out of the when we're talking about disability accommodation and travel. Easterseals is working really hard to make airlines accessible, in the by 2026. And we I don't know if you know this, but a really a just terrible thing that happens in the world is that wheelchairs get broken a lot

Rawan Tuffaha:

What?

Lily Newton:

Yeah, it's like a really common thing. Like, in the US, 31 wheelchairs a day is the average Deeter. Which is just unacceptable, and so that's, you know, that's something that gets talked about. We talk a lot about how airlines' bathrooms are inaccessible and how, we're, like, missing a lot of airline areas don't have braille on anything. So just overall inaccessible. But I also think what you bring up for neurodiverse people, airports can be really confusing because there's all these rules and, like, exactly like you said, they're written in more government terms than in plain language. So it can be really hard to understand what you're supposed to do. And I relate. When I'm in an airport, it feels like it feels like if I mess up the rules, like, I'm gonna get in trouble.

Rawan Tuffaha:

Yeah. So the answer honest or it's fraud kind of thing.

Lily Newton:

es. Absolutely. So I think that that's an important I think plain language is an important accessibility measure that airports need to take so that it is very clear what needs to be done. Because I can follow plain language, but I don't know all the airline jargon that they use. So I'm really glad you bring that up. What other pillar should we get into, Erin?

Erin Hawley:

Well, let's talk about, health. So when you were diagnosed with autism, what kind of support are you giving?

Rawan Tuffaha:

Well, at age 1, I was diagnosed with autism. The support I had was either therapy, speech pathology, ABA, and behavioral, and in addition to social skills, like learning about how those work. And, also in high school, from freshman to senior year, there was this unit called GLE, called general learning education, and they taught, you know, us on the spectrum, like, you know, about social skills. There was, you know, a body language unit, friendship ones, bullying units, there was love, and and sex education. Like, they even showed us, you know, how to put, like, like, you know, what's how does it work and, you know, if, you know, the sexual things, you know, you know, be careful of these, you know, diseases and whatnot, and, you know, and condoms don't always guarantee and stuff. So if they taught me, you know, really great things for the future.

Erin Hawley:

Mhmm. I've never seen that before in, like, disability education. I think that's amazing.

Lily Newton:

Yeah. That's so important. I think that so many disability education programs just assume like, well, these disabled teens don't need to know about sex ed. What's that got to do with them? But it does. Like, that's really important. And comprehensive sex education is how you learn about consent and, like, safety. And, I think that's really important. So I love that that was part of the program you went through.

Lily Newton:

I think that's really incredible, and this was in Canada.

Rawan Tuffaha:

Yeah. Like yeah. That's right.

Lily Newton:

That's really cool. And what a great program. And so you had good experiences with these with all of the therapies and programs.

Rawan Tuffaha:

Like, it's made me the person that I am now.

Lily Newton:

That's really awesome. I'm so glad that you got the support you need. And, I mean, you're clearly thriving. Like, you are doing so well and making amazing art, and you're super fun to talk to. Like, so that's so good that you got to this place. I'm so happy that that happened. Do you utilize any supports at your current education like, in your current school, are there any supports available?

Rawan Tuffaha:

Well, sometimes I would, I would speak to, I would talk to my friends. I would, I'm also, like, you know, from my former IEP, like, you know, in high school, like, I was allowed to, you know, double the time in tests and exams and, I would, book, you know, TA sessions, you know, for assistance on, you know, my assignments and preparation for tests and exams because, like, you know, my goal in in this program, you know, I wanted to, you know, get eighties nineties, like, go all Rory Gilmore on the whole, you know, on my grades. And so far, I've been doing that, and I'm hoping to get honors, one day because it was a struggle for me, like, you know, in in high school. Like, I got a 79. It's just the passing, the honors. It was 80 and up to to get there. But I'm hoping, like, I'm trying to fulfill my goal for myself and, you know, doing things the right way, studying honestly, like, that kind of thing. And I don't wanna step on anyone to get ahead and, you know, take with me what I learned in school and use it out in the real world, you know, with music and, you know, I hope one day that we're well known and overcome the stigma of autism and famous too.

Lily Newton:

I hope so too, and I think you guys are well on your way. I mean, you're making incredible art. I think that you're clearly so driven. You're at this time, while your band is, like, growing and doing these things, you're getting an education. I'm so glad that you're able to get those supports. I think that so much of what people think for people with any disabilities. Like, if people have stigma about, like, whether we're smart or not or what we can and can't do, I think that people need to realize that, like, with adequate support, we could do whatever we put our minds to. Like, you have a goal that you're working towards, so you just need the support to get to that goal.

I think that's really incredible, and I'm really glad that you've had that. You know, from a health care standpoint growing up, you're able to get those therapies and things, but also continuing into education. That's obviously something that is a big deal with Easterseals that we have programs that serve people at all ages and stages of life because, you know, disability support can't just end when you turn 18. Like, it's really important that it can be.

Rawan Tuffaha:

I know, right?

Lily Newton:

Because there's not that much autistic adult stuff, especially in the US. A lot of supports end when you turn 18.

Rawan Tuffaha:

And that's, like, sad because it's not gonna, like, you know, disappear once you're 18. It's a permanent thing.

Erin Hawley:

Yep. Yeah. I had experience with that. Because when I was in college, I was on my dad's insurance. And then as soon as I aged out of my dad's insurance, I had such trouble getting the services that I need, and, like, nothing changed about me. So I was like, why am I not getting his insurance? For example, like, you know, the disability for tax things, Like, I did not understand, like, why was there an expiry date on it to when it's, I should renew it every 5 years and get the doctor involved on that. Like, what I think to me, I don't I don't think it makes sense, you know, to have the to renew if my thing is, you know, permanent. Yeah. It just it's very close.

Lily Newton:

Yeah. That's such a good point. You get, you know, you get diagnosed with something and told, like, hey. This is gonna be the rest of your life. And it's like, okay, so if I can accept that, why can't my medical providers accept that? Like, this is forever. This isn't. Yeah. The renewal processes are just there's just so many barriers to getting the support that is necessary, which is a shame.

And I do think that, all this type of advocacy from a podcast like this to the music you make to the ASD band, the movie documentary being made. Like, I think that the more non disabled people can see that we're real humans that deserve support, accommodation, all these things. I think the more we get out there, I hope that the world gets rid of some of those barriers and it becomes easier. Because you're right, you shouldn't have to renew every 5 years. No. Well, this has been a really phenomenal interview. I think we're we'll wrap up, but I wanted to bring up one more thing that you and I had talked about the last time. One of the areas we work in is employment and making sure that people with disabilities get hired because because that's a real problem. A lot of people with disabilities face discrimination, and you shared with me a little bit about that. So can you share with our listeners what you're experiencing?

Rawan Tuffaha:

Like, to be honest, I have been having trouble, like, even looking for a simple part time job, you know, when I was looking looking for jobs to get hired, any like, you know, at my nearby local mall or the plaza near me that I can just walk from. Like, what happened or, like, you know, within my field of makeup too. Like, I tried searching for jobs, but then, like, you know, I get the automated HR response saying, like, you know, the they won't go through with our forward. And whenever I do have the interview, like, physical ones, what happens is that, you know, my that I when I mentioned that I have autism, it just, you know, rubbed it kind of sadly rubs them the wrong way and, you know, I've been declined, of being hired because of it, but I even though I still don't know the main reason, like, why it was declined in the 1st place. But I think that companies, what companies should know and do to be inclusive is that they should have coaching. The government needs to support, you know, others, you know, for for jobs and it would really be beneficial. And the thing is, if you're gonna hire someone who is autistic, they thrive by rules and adequate training so that they are well proficient in what they do, like, on the on the job in a professional setting. And, you know, not to judge a book by its cover and, you know, there's more to people, there's more to what meets the eye with, you know, others on the spectrum, and that's what I think the companies should, should be more inclusive on that.

Erin Hawley:

Yeah. I think a lot of companies don't understand that, like, someone's disability can be a huge asset, and, like, you'll just assume that we're not qualified and it's just not not the case.

Rawan Tuffaha:

Yeah. And and other than that, you know, I managed promoting by, promoting while juggling school and ASD. Like, you know, I managed promoting by, you know, taking permission to go. I would tell, like, you know, the head of student success ahead of time. I would prepare for tests when, whenever I could, like, for example, like, you know, from my flight to and from New York, like, you know, when I'm at the gate, I would just get I got cue cards with me to study in between flights and that's what helped to me. Yeah.

Erin Hawley:

That's great.

Rawan Tuffaha:

If you also, heads up, if you wanna access, ASD band, the movie, you can access it, on ASD band dot movie and, you can follow us on ASD band official on Instagram and TikTok. You can find the link on Spotify and Apple Music.

Lily Newton:

Yeah. And if you, click this specific link in this that's linked on our web page, actually, 50% of the proceeds for the ticket you buy to watch the movie will go to Easterseals, which is really incredible. And, again, just showing, how much awesome advocacy you're doing. And, you know, just what we were just saying about employers shouldn't underestimate. I think that someone would be making a major mistake to underestimate you, Rawan. You are, like, doing everything. And even what you just said that you're flying to and from New York to interview with the Kelly Clarkson show. And during that, you're using flashcards at the gate.

Lily Newton:

Like you are, somewhat unstoppable.

Rawan Tuffaha:

Yeah. Like, you know, I was studying for an exam. That was to do with school, but I I managed to take advantage of this by, you know, studying whenever I could, like, you know, in between the flights until they called us to the plane.

Lily Newton:

Yeah. And while you're doing that, the same week that you're flying to New York, studying for exams, doing all that, you also worked with me for the autism acceptance video series, and now you're recording this podcast. Like, you, juggle a lot of things. And I think that some people who have a lot of stereotypes about autism in their brain would be surprised and would see in your experience that, like, wow, I should not underestimate people with disabilities because I don't know what they can do. And, you know, I never wanna perpetuate the trope of that, like, you have to be exceptional with disabilities to mean anything, but at the same time, like, no one wants to be underestimated. Everyone wants the chance to be their most exceptional son, I think. Well, this has been such a wonderful interview. I, wish you literally the best.

Lily Newton:

I I think that this is gonna be one of those interviews we look back on and win ASD band is huge.

Rawan Tuffaha:

I hope that is good as they come.

Lily Newton:

I really I really hope so too, and I think that, for real, whether you're autistic or not, you're gonna love their music. If you are autistic and listening to this episode and you related to any of the things that Ramon and I were relating on about the autistic experience, you gotta listen to their music. I'll I'll wrap this up by saying that the first time that I listened to Fireflies, now finding out that that is your first original song, I am in awe because the first time I listened to that song, I was literally choked up. Like, I was like on the verge of tears because it was so incredible to have, like, my experiences to be able to listen to them through music. Like, that's just really incredible. So thank you for the amazing music you're making and the work you're doing.

Rawan Tuffaha:

I also can't wait for a second album to release too.

Lily Newton:

Have you started working on that?

Rawan Tuffaha:

Like, once I'm just awaiting, you know, what date is it, and I and our album is our second album will be called Almost Flawless.

Lily Newton:

Wonderful. Yeah. Like, you know, it's incredible.

Rawan Tuffaha:

It's got our first love song on it, you know, breakup songs, you know, a positive, you know, abstract ones and good vibes. So I can't wait for you guys to hear it when it comes out.

Erin Hawley:

Yeah. I'm excited to hear that.

Lily Newton:

Yeah. I can't wait either. And we'll be sure to, when we're sharing this episode, make sure all of our listeners and followers on the Easterseals socials know about that because that's really incredible. Thank you so much for coming on this podcast.

Rawan Tuffaha:

My pleasure. Thank you for having me.

Erin Hawley:

Thank you. Yeah.

Lily Newton:

And listeners, thanks for listening as always. Thanks for supporting the work we do. See you next time on another episode of Everything You Know About Disability is Wrong.

Rawan Tuffaha:

Thank you. Bye.

Erin Hawley:

If you like what you heard, go ahead and subscribe and leave us a review wherever you get your podcasts.

Lily Newton:

Thank you to our listeners. And as always, thank you to Easterseals for giving us the space and resources to share such authentic conversations from within the disability community to our listeners.

Erin Hawley:

And I'll see you next time for another episode of Everything You Know About Disability is Wrong.

Lily Newton (commercial segment):

This is a podcast brought to you by Easterseals.

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You know, we actually work for Easterseals, but maybe our listeners don't know what we do.

Lily Newton (commercial segment):

That's true. Easterseals is leading the way to full access, equity, and inclusion for disabled people and their families.

Erin Hawley (commercial segment):

And did you know we've been doing this for more than a century?

Lily Newton (commercial segment):

This includes helping disabled people find meaningful employment and addressing health care needs for all ages.

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