Jessica Frew is a 23-year-old actress, model, and now author of the children’s book “The Nonverbal Princess.” Using her communication device, she is telling the world about the importance of equality for people with disabilities.

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

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Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

You can find the transcript in the show notes below when they become available.

Transcript

Robotic Voice You're listening to Demand and Disrupt, the podcast for information about accessibility, advocacy, and all things disability.

Kimberly Parsley Welcome to Demand and Disrupt, a disability podcast. I'm your host, Kimberly Parsley.

Sam Moore And I'm your co-host, Sam Moore, here in Henderson, while Kimberly is in Bowling Green. How are you, dear? 

Kimberly Parsley I am doing very well, Sam. How are things going in Henderson? 

Sam Moore Oh, we're thawing out slowly, but surely we like pretty much everybody else in the Commonwealth of Kentucky is dealing with some, the aftermath of another snowfall.

Kimberly Parsley It has been a very interesting couple of weeks weather-wise here in Kentucky, hasn't it?

Sam Moore It sure has, because before this snow, which for me was about four inches, and I know for you was about four inches, prior to that, we were dealing with flooding.

Kimberly Parsley We were dealing with flooding, and I think we want to send our thoughts and prayers and heartfelt wishes out to, I think it's 15 people so far in Kentucky have lost their lives from the floods that were just horrific in so many places. So our thoughts are with those family members.

Sam Moore Most of those fatalities, if not all of them, were in the eastern part of the state.

Kimberly Parsley It was, the poor Eastern Kentucky. I mean, they just keep getting battered, don't they? 

Sam Moore They just can't dodge a bullet because I know just a few years ago, 2022, I believe it was, they had the big flooding.

Kimberly Parsley The big flooding, and then I think they got even some with Hurricane Helene, right?

Sam Moore Oh, yeah, because, you know, a lot of the mountainous areas like in western North Carolina and East Tennessee got that. And I think the far eastern part of Kentucky was a part of it as well.

Kimberly Parsley Yeah. And then now hit again. So our thoughts are certainly with those people. 

Sam Moore We hope that Demand and Disrupt brings you good therapy while you're... while you're trying to recover. 

Kimberly Parsley I hope people can listen and I hope things are improving for people in those affected areas. And here I live in, of course, Bowling Green, not, you know, flash flooding can happen anywhere.

Sam Moore Sure.

Kimberly Parsley So that's an issue. Right here in my little part of the state here in Bowling Green, I don't have any kind of aerial flooding where I am. What about you? 

Sam Moore Aerial flooding, you know, obviously depends on where you are. Where I'm sitting in this happy little corner of Henderson, it's not a huge deal, but, you know, it can occasionally happen. And one thing I know from having been a college student in Bowling Green for, I guess, six years counting grad school, you know, you can go weeks, even months without anything huge happening weather-wise, but when it rains, it pours. 

Kimberly Parsley That is true. They used to say they called it the Bowling Green effect. Like storms and stuff would just go around Bowling Green. 

Sam Moore It's almost like a black hole effect. 

Kimberly Parsley Something like that. Yeah. But I think that. Those days have passed, sadly. Those days have passed. [laughter] So my house sits on, the side of the road my house is on. Things don't flood because it's kind of up a little bit. But on the other side of the road, there's a sinkhole situation. And a couple of the houses just across the road did, like, the water got up to the foundations of the house. 

Sam Moore Oh, that's always dangerous.

Kimberly Parsley Yes, yeah.

Sam Moore Just goes to show there are more sinkholes in Bowling Green than just the famous one that emerged in the floor of the Corvette Museum in 2013.

Kimberly Parsley The Corvette Museum. Yes. Oh, was that that long ago? I didn't realize it was that long ago. 

Sam Moore Yeah, I was in grad school at the time, and yeah, I'll never forget. It was 2013, and that was all I heard about. 

Kimberly Parsley Wow.

Sam Moore From, of course, WBKO, the local media, because thankfully it emerged at like 5.30 in the morning when nobody was there.

Kimberly Parsley Right, right. Just the fancy car.

Sam Moore There was some car damage, but that's a heck of a lot better than people damage.

Kimberly Parsley Yes. Yes. It's just so weird that we had like flooding and then there was like snow on top of the frozen, you know, on top of the water that flooded here.

Sam Moore Yeah, yeah, we had, and then when that snow melts that's going to cause flooding.

Kimberly Parsley Yeah, you're right. It is. So I guess the question here is, Sam, when you're stocking up, when you know you're going to be stuck in your house for a couple of days, what are the things that you have to have? What do you stock up on?

Sam Moore [chuckle] You know, most people tell you bread and milk, but for me, it's more like bacon, eggs, stuff like, you know, easy to prepare items like frozen pizzas. Can't ever have too many of those when the weather gets bad because you never know how long you're going to be stranded in the house. When I was in college, I would have told you cornmeal chili and stuff that you could easily heat up in the microwave. 

Kimberly Parsley Yeah, yeah.

Sam Moore Those were crucial as well. I went through a phase where it would have been ramen noodles but…

Kimberly Parsley Oh yeah. Ramen noodles and pop tarts. That's the college diet, right?

Sam Moore Pop tarts, too, red beans and rice. I'm a big red beans and rice fan because it's so easy to prepare and you can just, you know, put sausage in it and you've got a meal there so just blah, blah, easy to prepare stuff that you enjoy and that's easy to eat.

Kimberly Parsley Yeah, and here it's, strangely enough, bacon and eggs, same thing.

Sam Moore I'll say brilliant minds think alike, Kimberly.

Kimberly Parsley Yeah, exactly. I guess it's because it is easy to prepare bacon and eggs, and you can do a lot with bacon and eggs.

Sam Moore Yeah, plus you can do BLTs, you know, but bacon is, bacon serves multiple purposes and it's good for plenty of dishes.

Kimberly Parsley Right, right. Now, you don't want my kids stuck in the house without cereal.

Sam Moore So cereal. Yes. I haven't eaten cereal in forever. Maybe I should eat more cereal. But if you're, but if Ian and Sarah go for several days without cereal, they get cranky. 

Kimberly Parsley Yeah. And they ate the terrible cereal. I mean, they ate like Reese’s Puffs cereal.

Sam Moore Oh, like the candy type.

Kimberly Parsley It's candy. It's basically candy cereal like Lucky Charms and stuff; yeah, that's what they are.

Sam Moore Cinnamon Toast Crunch.

Kimberly Parsley Yes. So, yeah, but you don't want them to be in the house without milk.

Sam Moore Oh, and coffee. As I take a sip of coffee right now, I've got to stock up on coffee before it's no storm.

Kimberly Parsley Oh, yes.

Kimberly Parsley That is the number one thing that, yes, you're right, is the coffee. And because I am a grownup, I also do make sure we have things like Tylenol in case someone, you know, were to spike a fever. 

Sam Moore Oh, yes. Good thought, medicine. Because you never know when that headache's going to pop up.

Kimberly Parsley Right. So I always make sure we have the right over-the-counter medications, make sure that our prescription medications are all filled up.

Sam Moore Absolutely. That's a definite must.

Kimberly Parsley Yeah, exactly. You know, people with disabilities have, they have so, we have so much more to think about when you're talking about emergency preparedness, you know? 

Sam Moore There are other aspects that people without disabilities don't think about and don't necessarily have to. For one, if you're getting your groceries delivered by, like, say, Walmart or, you know, Kroger has a special program now where they can deliver if you live in a community where there's a Kroger. And those folks aren't necessarily going to be able to get to you if the weather's bad.  So you do have to think ahead there. 

Kimberly Parsley You do, and I actually did that because I had to get groceries before my normal grocery-getting day, you know? I do have, I do have groceries delivered and I had to do it a couple of days early because I just, and well, I mean, it's, I appreciate those people who do go do your shopping for you and deliver. And I don't want them to be out, you know, when it's dangerous or even when it's just pouring down rain. So I did that. 

Sam Moore Yeah, it's harder to plan for rain, but at least, you know, when it snows, even though the forecast may not be accurate, you do have to sort of heed those warnings two or three days in advance when they have a pretty good idea that snow is coming. Yeah, if that's the case and you need groceries, you might want to go ahead and order. 

Kimberly Parsley Yeah. And then Michael does things like for us, like he salts the steps, you know.

Sam Moore Oh, yes. Just to prevent slipping just as much as possible when you go out there. 

Kimberly Parsley Right. To prevent me from falling, my balance isn't good anyway. So, you know, there's that. I know a couple of weeks ago we had Carissa Johnson on the show and she was talking about how she had to put a roof over her porch because when it would get slick, you know, and it would freeze, she's a wheelchair user. So she would be up at the top of her porch and she couldn't get, she would just slide back down the ramp when it got slick. So she needed that. And that's something I had never even thought about. 

Sam Moore I hadn't either, but the roof would definitely, obviously, it might not control the temperature, but at least it would keep out the... the snow and sleet, you know, all of those types of elements so she'd at least have a dry ramp.

Kimberly Parsley Yeah. Yeah. And I know there's for, for people who depend on things that are battery charged, it's like, I don't know anything about how that works. Like if, if you have a, like you use a power chair, I guess you really worry about if the power goes out and you can't charge your batteries. 

Sam Moore batteries. Yeah. And you don't want to be without a battery. That reminds me. My dad was at UK during the historic blizzard of 1978, which I was not born yet, obviously, until 10 years later. But I heard all kinds of stories about that. One of them dad used to always tell me was he was walking between classes one day because they hardly canceled class at all. I think one day he said they canceled, but that was it. But the elements were not favorable. A lot for like a month during the blizzard of 78 because snow just kept falling and falling before they could get it cleared off. So dad was between classes. He saw this guy stranded in a wheelchair out in the cold, blustery conditions. And he was like, what are you doing? And the guy in the wheelchair goes, my battery died. 

Kimberly Parsley Oh no, that would be so horrible.

Sam Moore It's the least opportune time for your battery to die. And it was snowing. Of course, there was already snow everywhere. Dad managed to assist him into the nearest building. Oh, that's great. make a phone call, do what he had to do to get the battery situation resolved. But I cannot imagine being out in those conditions with a dead battery.  That's just ultimate bad luck. 

Kimberly Parsley Yeah. Oh my goodness. Yeah. And there's so many things you don't think about. Like, you know, I know it's in cities when there's a plow in the roads, the snow ends up on the wheelchair ramps.

Sam Moore Oh, yeah, when they push it off to the side.

Kimberly Parsley Yeah, when they push off the side, which, you know, that's an inconvenience and a hassle for people who can just walk over it or walk around it. But for someone in a wheelchair, that's, I mean, that's a game-stopper, right?

Sam Moore It is a game changer. You know, you're going to have to do way more work. You're going to have to take more of a detour, way more of a detour than most people to, you know, navigate where you need to be around the snow. 

Kimberly Parsley Right. So, so many things that people have to think about. And so, our interview today.

Sam Moore Another drum roll. [laughter]

Kimberly Parsley I know, right? People doing cool things, like people doing cool things, just, well, number one, it exhausts me, people who do a lot of stuff, but also it just impresses me so much. People who meet these, do these milestone things.

Kimberly Parsley Our interview guest today is a model. She's an actress. She is in a pre-law program, interning at a law firm. And she, well, she's written a book and she's only 23 years old.

Sam Moore That's it? That's all she does? [chuckle]

Kimberly Parsley Yeah, I know. Right. At 23, 23 years old. That makes me tired. It just does. 

Sam Moore Yeah, that's... It wears you out just hearing about her. 

Kimberly Parsley It does. It does. And she was a delight to talk with. Her name is Jessica Frew. She uses something called a Tobii eye gaze camera. She'll tell us all about how that works and let us know. But I mean, just so many things I was looking up. She's actually in a movie that you can watch on Amazon Prime. It's called Crispy.

Sam Moore When you're on Amazon Prime, that's how you know you're big time. I just rhymed and didn't intend to. I'm a poet and don't know it, Kimberly.  Didn't know it. [laughter]

Kimberly Parsley So I looked up her movie. She's also in, I believe, a TV series on Amazon Prime. So she's done lots of things. She's done some modeling. And then she wrote a children's book. Jessica is nonverbal and she wanted in everything she does, she wants to open people up to the possibilities, people with disabilities. And so her book is called The Nonverbal Princess. And she is going to tell us all about that. fascinating interview with her. 

Sam Moore Non-verbal princess. Such an appropriate and catchy title for sure.

Kimberly Parsley Isn't it, though? Isn't it, though?

Kimberly Parsley So now... We will hear my interview with Jessica Frew. 

Sam Moore Enjoy!

Kimberly Parsley Welcome to Demand and Disrupt, a disability podcast. I am pleased to be joined today by Jessica Frew. Jessica is an author, an actress, a model. She's so many things, y'all. So I am going to let her tell you all about herself. Jessica, welcome to Demand and Disrupt. And so tell us about yourself. 

Jessica Frew I'm 23-23 years old. I have cerebral palsy and communicate with a Tobii gaze computer. I'm a model, actress, children's author, and full-time student majoring in pre-law and criminal justice. I was a teacher-slash-counselor student volunteer for children and adults with disabilities in the center. I used to counsel this boy one-on-one on his behavior and train him on using the TDI series for a year and a half before I started college. In my first semester of college, I mentored a group of individuals with all types of learning, behavioral, and cognitive disabilities. Also, I'm interning at a law firm. 

Kimberly Parsley Wow. That is a lot. Thank you for sharing all that. So now I understand that your children's book is called The Nonverbal Princess. What made you want to write a children's book? 

Jessica Frew I wanted to write a children's book because people have treated me differently since I was young and thought I wouldn't know anything because I was non-verbal. Hence, people used to say very mean stuff right before me without realizing I could understand everything they were saying, making me feel worthless. I didn't even have the confidence to communicate with my computer in public or even with my family. I just used it for schoolwork until I found the confidence in myself. I want to teach children worldwide that people with disabilities or differences who look or act differently are humans with emotions, too. 

Kimberly Parsley I get that. Being blind, people often think they can make hand gestures and things to each other that blind people don't intuit that there's a conversation going on, a non-visual non-verbal conversation going on that we won't know that's happening. And it is extremely hurtful. And I am sorry that you had to go through that. You're 23. I guess I'd sort of hoped things wouldn't be that way for people younger than me, but apparently they still are. So tell me, how did the idea for the non-verbal princess come about? 

Jessica Frew Well, I thought, what would make a kid interested in learning about disabilities? Then I thought about Disney. I thought there was an ever-disabled princess. So I thought, why not make a first non-verbal disabled princess in history? 

Kimberly Parsley Great idea. Great idea. Definitely. And we will link to the book in the show notes of the podcast. And you use an eye gaze computer to communicate. So can you tell me about that computer? 

Jessica Frew A Tobii Eye Gaze is a computer controlled by your eyes, and the way the Tobii Eye Gaze with Microsoft Surface Pro works is that an Eye Gaze camera tracks the person's eye movements, which then moves the mouse on a computer screen. The person selects items, either by holding their Eye Gaze for a specific time, referred by blinking, or by clicking an external button, but with all of technology, sometimes it acts up and has errors. So I just need to wait or restart the computer when it is acting up. 

Kimberly Parsley I hear that about technology. It happens. It is both a blessing and a curse. And you were initially, in the bio I read of you, it said you were initially hesitant to use your communication device in public. And I'm wondering what helps you get over that hurdle? 

Jessica Frew I got my Tobii when I was nine, but I never used it to talk to anyone, not even my family. I kept my computer in my bag when I was at home. I only used it at school for schoolwork and communication with my best friend. I never used it with anyone else. Because, as I already said, people were looking at, talking about, and judging me differently during this time, I decided not to use my computer to talk to anyone outside of my family or in public. I felt really useless and not aware of myself because of other people. So much so that I didn't think I was worth enough to use my computer to talk to anyone. I regret that I never got to have a full chat with my dad on the computer before he died. It didn't matter that we had our own way of talking to each other and that we fought a lot through my eyes without using my computer. The thing I regret most in life is that I never talked to my dad on the computer. Now I'm wondering what the hell was wrong with Jessica and how I let that go. Even on his hospital deathbed, I knew he was going to die. That would have been the perfect time to finally talk to my dad on the computer, but I didn't. It still hurts me that I didn't have the courage to talk to my dad on the computer before he died. Like how I could let other people make me feel so useless that I couldn't even use my computer to talk to my dying father. I still don't get how I let that happen, but I still didn't talk to my computer in public for a few years after that, and the way I talked to it got worse when I stopped talking to my best friend on the computer. Then, when I was 16, I continued to talk to my best friend on the computer. I began to talk to the school's helpers on my computer a little more. But not a lot, and not in public or with my family either. My best friend and I had a fight the following year. I talked to my computer a lot more with the aides and my mother a little, but that was all I did at the start of that year. As the year went on, I got better at using my computer to talk to my mother, the school's aides, and two close cousins. Even though I made friends online while I was at home, I still didn't talk to my computer in public. In the fall of that year, I started hanging out with someone I had known for a long time but had never met in person. We met up in person and started to talk and hang out. Someone gave me the courage to speak in public, but that person is no longer in my life, and I never get the chance to talk to them again, but that's a story for another time. My point is that one person can make a big difference in someone else's life by being kind and treating them like a person. 

Kimberly Parsley That is heartbreaking, Jessica. I mean, I'm glad you ultimately did get past your hesitation. And I think that just goes to show just how much internalized ableism we all suffer from. So your bio that I found also refers to you, and as you said, as a model and an actress. Will you tell me about your work in those arenas? 

Jessica Frew Yes, I acted in a series on Amazon Prime called Surviving the Cartel and a movie on Amazon Prime as well called Crispy. I model in the runway of dreams for Victoria's Secret Adaptive and Tommy Adaptive. I decided to go into this industry because I want to make a difference in it for people with disabilities. When I'm reading, pre-programming my lines into my eye gaze computer, or modeling for a brand, I realize I can make a difference in the entertainment and fashion industries. There's a tiny percentage of disabled, non-verbal actors and models in the industry, and I dream of opening opportunities for other non-verbal actors with communication devices. I want to show producers we can act like every verbal actor slash model in this industry, but they need to give us a chance to prove ourselves. Unfortunately, I took a break from the industry for two years to focus on school, but now since I'm all settled into school, I'm starting to get into the industry full speed ahead and hopefully, I will book projects very soon. 

Kimberly Parsley Well, best of luck and I will keep my fingers crossed and we will definitely be looking out for those movies on Amazon Prime and I will drop a link to those in the show notes. If I can find a link, we will drop a link to those in the show notes for everyone. So what is the state of representation for people with disabilities right now? 

Jessica Frew All I can say is that media representation for people with disabilities has improved over the years, but it has a lot of improving to do before it can be considered as equal media representation because we see less than 15% in the media and 70% is inspirational porn. Also, 60% of individuals with disabilities are victims of violence daily, but we never hear or see that in the media. 

Kimberly Parsley That is true. Those are stark statistics.

Jessica Frew I benefited so much from reading people with disabilities comments and messages about how I changed their lives on social media. It is the best feeling in the world to change people's lives. It reminds me why I work so hard to prove people with disabilities can do anything as non-disabled people. 

Kimberly Parsley How have you benefited from the advocacy of other people with disabilities?

Jessica Frew I benefited so much from reading people with disabilities comments and messages about how I changed their lives on social media. It is the best feeling in the world to change people's lives. It reminds me why i work so hard to prove people with disabilities can do anything as non-disabled people.

Kimberly Parsley And how is it, how important is it for you to be an advocate for other people with disabilities? 

Jessica Frew It means the world to me to be an advocate for people with disabilities because I can change so many people's lives as that one person did for me. Although we are not on friendly terms anymore, and I would highly dislike to give them credit, I don't know if I will be doing things or even communicating today if they didn't give the confidence and treat me as everyone else. 

Kimberly Parsley People come into our lives for different reasons, don't they? There's a season for all relationships. So I am definitely grateful that that person did come into your life. Jessica, I wondered, I didn't ask you anything about your talk show, and I wondered if you wanted to be writing something about that. 

Jessica Frew It's a new talk show where I interview people who have amazing story, and people in the industry, but I didn't have time to focus on it as I like hopefully soon I will have more time, to get really started.

Kimberly Parsley Sounds great. Jessica, it has been wonderful talking with you and we've only touched the surface. We didn't even talk about your adventures as a law student. So next time we'll have you on 

Jessica Frew Thanks so much for having me on. I truly appreciate it.

Kimberly Parsley The pleasure is mine. Thanks, Jessica.  Demand and Disrupt is a production of the Advocado Press with generous support from the Center for Accessible Living based in Louisville, Kentucky. Our executive producers are me, Kimberly Parsley, and Dave Mathis. Our sound engineer is Michael Parsley. Thanks to Chris Ankin for the use of his song, Change. Don't forget to follow or subscribe so you never miss an episode. And please consider leaving a review. You can find links to our email and social media in the show notes. Please reach out and let's keep the conversation going. Thanks, everyone. 

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