All Mandy Harvey ever wanted was to be a singer. But that dream was nearly eclipsed by Ehlers-Danlos syndrome (EDS), a connective tissue disorder that left her profoundly deaf, unable to hear a sound. At the time, Harvey, a Colorado State University freshman, was studying vocal music education, and training for the career she’d always dreamed of. A gifted musician with perfect pitch, she tried hearing aids, which didn’t help much, and the 19-year old was dropped from the music program. But with her father’s encouragement and the use of visual tuners to help her find the correct pitch, Harvey found her way back to music. She sang jazz in local clubs, wrote songs, and was an audience favorite on “America’s Got Talent” (season 12) in 2017, where her angelic, lucid tones won over Simon Cowell. She’s four albums and released multiple singles. When not engaged in music making, Harvey is an ambassador for nonprofit organizations No Barriers and Invisible Disability. She is also an author, having co-wrote Sensing the Rhythm: Finding My Voice in a World Without Sound, and more recently a children’s book. ABILITY caught up with the Florida-based musician on Google Meet, which provides real-time speech to text captioning, to discuss her children’s books, her music journey and the challenges along the way.
Chet Cooper: Can you first talk a little about your children’s books with Keepsake Tales?
Mandy Harvey: Our goal was to write a book that’s about overcoming obstacles and challenges as a team, so you’ll have multiple kids working together utilizing their unique skill sets and their differences that help them to succeed, because they’re all different. The cool part about the book is parents can send in, on a secured level, a couple of very specific pictures, and then their child can be put into the book. No matter what your difference or different ability, you could see yourself being the hero of your own story, which I think is quite beautiful.
I think we’re showing only five percent, or something like that, of children in books who have any kind of difference or disability. When you think about how much of the world is made up of people who are unique, it just doesn’t make any sense. It is such a profound change that happens in your head when you see people who are like you accomplishing goals and dreams. It changes how you approach things, and it gives you the confidence to try.
Cooper: Is it a digital book?
Harvey: It’s printed. I’m not sure if you’ll be able to see this. I don’t know if you can see me.
Cooper: I can see the book.
Harvey: This is a little girl named Heather, and she was born with one arm. You upload the pictures digitally and then you get a hard copy print, Her image is put into the story, so she gets to be on the adventure as she is. There are certain aspects and elements that are “forever,” like the other people in her little journey. One of the other main characters is a boy who uses a wheelchair. You don’t get to dictate, I guess, the other kids in the story. But the main person is you.
Cooper: To clarify, the picture that was sent to you was of that little girl?
Harvey: Yes. Her mom wanted this book to have her in it, so in every book, the name changes. So this one’s called Heather Climbing in the Jungle, but it could be Charlie or Mandy. It’s whoever the child is. And other their features, like their shirts and pants, are already programmed in, and then we utilize technology and artists to add them in. Most of the pictures we take—two or three shots—are of their face, and then we utilize those images and put them into the story.
Cooper: I’m sorry, I feel like I’m ignorant, asking dumb questions, but she is an amputee.
Harvey: She was born without an arm.
Cooper: So she was born with limb loss. What happens with another type of disability?
Harvey: We change it for every kid. Even if it’s not a disability and it’s just—
Harvey: Another kid with a different race or background. We’ve had other children with Down syndrome, so they can see themselves being in a story. We change the images in each book, and we change aspects of the book to fit the characteristics of whoever the kid is.
Cooper: That is very customized. I had no idea. When you first mentioned it, I was picturing incorporating an image of the face into certain pages. But you’re putting a lot of effort into each of these.
Harvey: What happens if you have another child who has a prosthetic? Just because their face is their face, it doesn’t mean they can’t see that that kid doesn’t have a prosthetic. They can see all of themselves.
Cooper: That is really great. You’re doing one-offs?
Harvey: The story’s the same. This one’s Ely. He gets to see himself on the same adventure. The adventure stays the same. Most of the dialogue stays the same, except their names are used, and pronouns are however their pronouns are selected. If they’re “they” and “them,” it’s “they” and “them.” If it’s “he” and “she,” it’s customizable in that manner as well. And then you have differences. You can tell, in these two books, because the kids are kind of similar in stature. You’ll see that their bodies look the same basically—the same pants, the same shirt. But the unique features of who they are is who they are. Whereas if the child is a different body shape or in a wheelchair or something else, then we customize the image so that it matches them.
Cooper: Very nice.
Harvey: Yeah. It’s important. I don’t know why we have this running desire to make everybody look “normal,” when there really is not a thing of what is normal.
Cooper: Right. Are you aware of what we’re doing in the entertainment industry, our group?
Harvey: Yes, I’m very aware. I’ve gone to a couple of different programs and awards and galas and stuff like that where we’re trying to incorporate people who have disabilities that we’re portraying in film to be the actors who are utilized in those roles instead of having just a bunch of, you know—“normally abled”? I don’t know what the right word is, “average”—?
Harvey: —people playing a unique difference. There are a lot of different people out there who are fully capable and brilliant. They just don’t get the opportunity because they don’t look like one specific person. But that’s true with skin colors, accents and backgrounds. We have such a weird time with saying, “No, no, no, our audience is only going to watch this.” I feel like we’ve moved beyond that, and the people who are deciding what we get to see aren’t plugged in the way they need to be.
Cooper: Yes. We are working with most of the major studios right now with our abilityE.com. There are champions within those studios, but it’s a hard industry to keep on track. Even though you have champions, there are so many layers in casting, plus the writers, and the old mindsets that exist.
Harvey: I think it’s difficult because there are people who are afraid to do something different because it’s unknown, and then once they open that door and jump in, they realize there wasn’t really anything to be afraid of to begin with. But it’s not just the people you see. It’s every aspect of everything. We have 25 percent of the world who have a difference or a disability. We allow them such a small percentage of life, whether that’s a job, such as the people who are running for coffee or one of the people who hold one of the boom mics —stuff like that. It’s not just the people in front of the camera. It’s all of the other people who make entertainment successful. We don’t think about those roles.
You have all of these different programs about celebrating disability awareness month and stuff like that, and all of the people on the board and all of the people who are in these concerts and all of the people who are doing all the work are not differently abled. Why? We’re everywhere. It’s not scary, it’s just new. Once we break that barrier down, it won’t be a problem anymore.
Cooper: You’re describing “Nothing about us without us.” The work that we’re doing, to let you know, is both in front and behind the camera. Everything you say is exactly in line with our thoughts. You lost your hearing when you were 18?
Harvey: Yeah, in 2006.
Cooper: Had you ever thought about disability issues before that?
Harvey: You know, I did. I’ve been hard of hearing my whole life and having to deal with all of those barriers like struggling to communicate and ear infections and surgeries and having to try different FM receivers and things like that. It’s always been something that’s been on the top of my mind. However, you get tastes of it that are undeniable. I remember the first time, when I was 17, and I had just had my first knee surgery. Right off the bat, early in my senior year, I dislocated my knee. I missed the entire year, mostly just having a lot of surgeries. But there was an incident where I was in a wheelchair, and my family was going around and we were doing basic errands and shopping. We stopped at Kohl’s, and the doors opened at you, and then there are two buttons you have to push. They don’t just open both doors at the same time. They open one door and then you have to go in, and there’s another button to push and that door opens.
I ended up getting stuck inside this matrix of problems, because the first door I got through fine, but to hit the other button, I had to move my chair close to the button, and then hitting that button, the door opened out into me to the point where I couldn’t get out.
Cooper: Did you ever get out?
Harvey: (laughs) I was just stuck until somebody came and rescued me. And I thought, “This would have been a really obvious thing to fix, if they had had one person test it out with a wheelchair.”
Harvey: But they don’t take that simple step because, you know, they’re just like, “Oh, we need a door button. Just stick it over there. It’ll be less noticeable.” I don’t even know why they chose to put it there, but it was very obvious in that moment how little I think about the necessary steps of everything, and it became so obvious that I couldn’t ignore it and I saw it everywhere.
Cooper: I have a story. I went with a friend who uses a wheelchair to a casting audition in a very old building with a very, very small elevator. It could only fit her and me. In her chair she could not reach the buttons. If I hadn’t been there, she couldn’t have gotten to the floor that she needed to go to. It was an audition for an actor who uses a wheelchair.
Cooper: Hopefully “universal design” is being taught in all architectural schools.
Harvey: Yeah, and unfortunately, it’s difficult to go backwards. There are a lot of buildings that are grandfathered in, and until they decide to remodel, they don’t have to deal with those problems, so they just ignore them until they can’t, instead of doing the right thing and fixing them.
Cooper: Yes. Let’s take the rest of this time to talk about your music career.
Harvey: (laughs) Sure. I started when I first lost my hearing as a way to get back to music, sticking with what I knew and what I loved, which was jazz, and then performing jazz, which is a joy. There will always be a huge part of my life that’s connected with jazz. I was constantly faced with the questions of, what’s the worst that can happen? I never wanted to be a performer. The idea of standing in front of people was absolutely nauseating. After I lost my hearing, which was my biggest year growing up, it was like, “What’s the worst that can happen by singing in front of people?” I couldn’t think of anything. It’s not like they’ll explode. The worst that could happen is, they don’t like it. Who cares? It won’t kill me.
I started asking better questions, instead of “What’s the worst that can happen?,” which is constantly focusing on the negative, but rather, “What’s the best that can happen?” By putting in all of this work to be frustrated, to sometimes want to punch a wall because I’ve spent the last 10 hours working on a song and went to sleep and woke up and can’t remember it, and there’s nothing I can do to recall that information other than to sit down at a piano and redo all of the things I just did. Why can’t it be easy? What’s the best that can happen by finding a way? It turns out that the best that can happen is that it encourages people to put in their own work and chase their own dreams and to open the door for a lot of conversation questions that people have been too afraid to ask or just not really cared to ask before.
That eventually led me to a conversation with a friend of mine named Erik Weihenmayer—he’s the first blind man to climb Mount Everest. He’s an amazing human being. He asked me why I was not writing my own music, which is another step of crazy. And I said, “It’s terrifying.” He said, “What’s the worst that can happen?” And I couldn’t think of anything. I tried to think about what’s the best that can happen? Maybe I’ll get to express myself and put words to all of these emotions I’ve been struggling to process and deal with. But even better, maybe it’ll give words to someone else who’s going through the same thing and give them an opportunity to know that they’re not doing it by themselves.
So I wrote a song called “Try.” I had this crazy opportunity to perform and audition for “America’s Got Talent” with this song. I look back on it and I’m not even sure why I was brave enough to do something that crazy. I just wanted to encourage one person, and if I could encourage one person to get up off the floor or start one conversation or change one person’s perspective of what a disability looks like, to say that we’re not broken pieces of rubble that you need to shove under a rug somewhere, but that we’re vibrant, intelligent, passionate, dream-filled people, it would be completely worth whatever happened. It became kind of a snowball effect from there of doubling down.
Now, I just released my fourth album, Nice To Meet You, which is all original music. I’m writing my next album, which is unbelievably so much fun! To be able to express myself in this way and to have other people attach to that music and start pushing for their own dreams and their own goals, it’s quite amazing. To think that it all started with a person who gave up on themselves and was a failure at seemingly everything. It’s a beautiful turnaround.
Cooper: Because you did try.
Harvey: (laughs) I did. And I failed a lot. I think that’s the beautiful part about it. It’s not just try and then if you put in the work and the effort, then all of your dreams will come true. That’s not true. That’s not the point. The point is to say that it really doesn’t matter what the outcome will be. If you sit on the floor and you refuse to try, you’ve already failed. What’s the worst that can happen? It’s not like you can fail more. You already are at your lowest if you refuse to get up and try, and you are shutting the door to the possibility of difference—some change, some hope, some positivity, just something.
Cooper: So, it’s a combination of the journey and hopefully helping others at the same time?
Harvey: Yeah. I think if I were just stuck in my own head for this long, I would have lost my mind a long time ago. It’s not in my mental prowess to just focus on myself all the time. It’s very difficult for me to care about myself that much. (laughs) And that’s been true my whole life. I think it’s just the type of brain I am. I don’t know. Or some weird people-pleasing problem that I have. But it seems to be a problem that people enjoy. (laughs) I want to keep at it, then.
Cooper: If you know Jungian theory or Myers-Brigg, you’re described as a “feeler.”
Cooper: Speaking about that journey, how did you meet Erik Weihenmayer? He loves journeys.
Harvey: Yeah, he’s amazing at journeys. I was singing at Jay’s Bistro in Fort Collins, Colorado, and a couple of members of the No Barriers team were there, and they asked me to come and speak to their staff before one of their yearly summits. I went and sang a cappella because I didn’t have a ukulele. I didn’t know how to play ukulele at that time. I just told my story, and I was so very angry and so very bitter, but I was making my way and trying to figure out life and learning to love who I was more so than I’ve ever really liked myself (laughs) in the past. And that’s where I met Erik and the whole No Barriers team, and they eventually asked me to sing and talk a little bit at the summit. I’ve been connected with them ever since. I think that was in—gosh, I want to say 2009.
Cooper: You can say 2009.
Harvey: (laughs) I think it was. I don’t want to be wrong, but it’s pretty close to being right around there.
Cooper: When you sing a cappella, do you go back to your jazz roots?
Harvey: Nowadays, I’m a lot more adventurous, but I sang either “What a Wonderful World” or “Over the Rainbow.” I can’t remember which one I sang at that particular one. But I also do believe I did “Smile.” It was my song when I was at CSU [Colorado State University]. It’ll be forever a song that impacts my life, and to me, as much as “Try” has impacted my life and other people’s lives, “Smile” was the song that kind of started everything for me. It was during the time when I was losing my hearing, and I thought that my memory of music was going to disappear and if I was going to forget every song I had ever heard, I was going to forget every song but one. I spent numerous hours and an unbelievable amount of time singing “Smile.” I’m not even sure why I picked it. I think it was just the first one that came to my mind when I made the decision to hurry up and pick a song before it was too late. I’d sing it every day, all day long, just so I could hold on to something.
Cooper: I am sorry. I have not heard you sing it today yet. (laughs)
Harvey: No? I love that song! It’s amazing. Do you want me to sing it now?
Cooper: I would love to hear it, yes.
Harvey: Sure. [sings the song]
Smile tho’ your heart is aching
Smile even tho’ it’s breaking
When there are clouds in the sky
You’ll get by
If you smile
Thru’ your fear and sorrow
Smile and maybe tomorrow
You’ll see the sun come shining thru’ for you
Light up your face with gladness
Hide ev’ry trace of sadness
Altho’ a tear may be ever so near
That’s the time you must keep on trying
Smile, what’s the use of crying?
You’ll see that life is still worthwhile
If you just smile
Cooper: There’s a background of an audience here that’s clapping, they’re on their feet— (laughs) That was really wonderful. Thank you for that.
Harvey: Thanks. I think I want to get the word “smile” tattooed on my foot.
Cooper: On your foot?
Harvey: So I can look down, because I always perform barefoot anyway. Some days it’s really difficult to stand up in front of an audience and to smile and to sing songs that I can’t hear for the benefit of them, because I don’t get to fully enjoy it. It’s very ghost-like to sing something that you can hear. I enjoy the team aspect of it in the vibrations, but sometimes you get wrapped up in the negatives, and it’s nice to have a reminder to say to yourself, “This is a huge journey that you’re on. You should be thankful.”
Cooper: I don’t do tattoos, but I could find somebody for you.
Harvey: (laughs) I’m not a huge tattoo person, either, but it seemed like a good idea. If I was going to have a tattoo on my foot, I would just make it that.
Cooper: That’s funny.
Harvey: I’m doing a lot of research on the cochlear implant right now. I’ve been kind of tossing the idea around of potentially getting one. I wasn’t a candidate for a long time, but it turns out that after all of the MRIs and tests that I am a candidate for one. So I’ve been doing research to see how it works for people, which kinds they bought and how that goes.
Cooper: I’ll connect you with ABILITY’s Marge Plasmier. She’s the one who got the cochlear implant. She could share her insights on how it’s worked for her.
Harvey: I would love to talk to her. It’s a daunting thing for many different reasons. You only get to pick that once. There are different companies.
Cooper: Same with tattoos. You had some problems with you speaking at some point from certain people within the deaf community?
Harvey: I think everybody has the right to have their own opinion, and they’ve got reasons for it. I think with anything, you’ll find people who are very supportive of what you do, people who don’t care what you do because they’re focused on their own thing, and then people who are not going to care for what you do. I think that as frustrating and terrifying as it is to have people hate what you do, I understand, vaguely, the reasons why and the problems and the discrimination and the fear of everything associated with being a part of that community, especially from the past. In our US history, if you had a disability, you were just taken from your family and shoved into institutions. Or people would refuse to allow you to have children because they didn’t want you to spread your “disease” to further generations. There are so many different reasons why people legitimately get protective and fearful of things they have a history with. So I can’t be mad with them for having an opinion. I can just choose to ignore them or take a piece of what they’re trying to say and learn something about their perspective, whether or not I agree with it.
Cooper: I met Heather Whitestone. Do you know who she is?
Harvey: I don’t off the top of my mind.
Cooper: She was Miss America in the mid-90s.
Harvey: Oh, yes.
Cooper: I met her when she first won, and from different travels throughout the year we would run into each other. By the end of her year, she had been beaten up so much by certain people who didn’t want her to speak in public. She started out feeling like an angel and ended up so hardened, it was very discerning to see how she had to change to deal with what she wanted to do, and that was to communicate. She had the ability to speak, so why not speak? She had to harden herself to overcome the frustrations. And this was before social media. It was tough. I always felt sad for her situation.
Harvey: Yeah. It’s difficult. You would hope that with as much as we talk about tolerance and accepting other people regardless of their lifestyle choices or whoever they are, you would like to think that that’s true across the board, but there are always going to be people who care, and there will always be people who don’t. She has to make a decision, as tough as it is, to say, “This is who I am, and I don’t care what you think. This is how I’m going to communicate. This is how I communicate. I will try my best to be loving and respectful of you and hope that you can be loving and respectful of me. But in the end, it will not change who I am.”
Cooper: That’s really nice.
Harvey: It’s a difficult choice, especially when people are hating on you and you don’t want people hating on you. If I allowed myself to really dive into all of the random bullies who are out there who send me crappy messages all the time, I would be a nightmare of a mess. I just refuse to read them. What’s the point? They don’t know me at all.
Cooper: Are you talking about my emails to you?
Harvey: (laughs) Yeah! If you could just, like, shut up for a while? (laughs) No, I’m just kidding. No!
Cooper: That’s funny. There are a lot of bullies out there, and they have a voice with social media, which is another topic.
Harvey: Truly, and this is my opinion, but I really do believe this: anything they say is far more of a reflection of them and the things that they’re dealing with in their life than it has anything to do with me. Some people have so much anger and hate in themselves or at themselves that they have to spill it onto other people just to make them feel better. And in a weird way, if I can make them feel better by having them vomit bull crap onto my page, you go for it. I’m just going to delete it. Maybe it’ll make you feel better. But I’m still succeeding in my job of encouraging people! (laughs)
Cooper: So you have a folder you’ve created called Bull Crap Vomit?
Harvey: (laughs) No, I don’t keep it. I just delete. It’s the same if I do a Facebook premiere or something like that. There are always a couple of people who are on guard, who are watching the comments, and if there’s anything not appropriate in there, it could be something like, “Oh, I don’t like that she’s doing this,” or “Oh, she’s—,” with all these curse words and whatnot, and it’s like, I’m a family-friendly kind of person. I’ll just delete it. I won’t even read it. It won’t change what I do tomorrow, unfortunately.
Cooper: You said “family-friendly.” Do you have a family? Are you married? Children? I don’t know anything about your background.
Harvey: I don’t have any children yet. It would be a joy to eventually have kids. It’s something I’m looking forward to. I am in a relationship with a gentleman. He’s French, which is one of the big reasons why I’m interested in getting a cochlear implant, because I would like to learn French. He’s learning how to communicate best with me, and sign language will always be my preferred language, so he’s learning to sign for me, and I would like to learn French for him.
Cooper: Would you learn French sign language?
Harvey: I would like to do both. I can order for myself and I can understand the signs. I can read a lot more than I can say anything out loud, because pronouncing something I’ve never heard is a bit ridiculous, but I’m trying to learn phonetically. I used to sign in French when I was in high school, so I’ve got some idea about certain shapes and vowels. But his mom took a night class in French sign language. She didn’t know it was different from American sign language. I started learning some French sign language just so she wouldn’t know that she doesn’t communicate with me still.
Cooper: That is so nice of you!
Harvey: Well, I feel bad. She went through the trouble of doing something extraordinarily nice for me, and the least I can do is repay the favor.
Cooper: Most people who are not within the deaf community do not know that there are different sign languages for different languages.
Harvey: Most people don’t realize that 80 percent of families with a person who’s deaf don’t learn sign language. The fact that I have people in my life who are supportive of me and want to communicate on my level and are learning how to do so is rare, and it’s a blessing. I wish it weren’t rare. They’re different. Even sign language has accents, so you can tell a person who’s from New York versus someone from California. They sign a little bit different.
Cooper: They use the middle finger more often?
Harvey: (laughs) The New Yorkers, they sign so fast, it’s amazing! (laughs) It’s like what you would think of a New Yorker. They don’t have time to slow down for you. You’d better hurry and catch up. Whereas in other places, it’s a little more fluid, a little more Zen.
Cooper: I didn’t know that. I attended a Deaf cruise several years ago, on Royal Caribbean, with over 3,000 people who were deaf. Had you heard about that?
Harvey: Yeah, I’ve heard of that.
Cooper: What was interesting is I don’t sign, so I was the odd person amongst thousands of people. And when they tried to communicate with other people from other countries, they would get in a circle and figure out how to communicate. It was so wonderful and interesting to watch. Everyone had such a great time. C.J. Jones was there. Do you know him?
Harvey: Of course. I love that man! He’s so sweet. I was in Italy once—before COVID—and I was walking out of a store and I saw a couple of people signing. I was with my cousin and she smacked me on the arm and pointed them out. (laughs) Then looked at me like, “What is she looking at?” and I started signing to them and they lit up. And then we came over. They were from Italy, and we saw a couple of other people who were signing in this same square. One of them was from Brazil, and someone else was from a different country. We all sat down on the sidewalk and figured out how to introduce ourselves, because this person knew a little bit of this and that person knew a little bit of this. It was easy enough to explain the alphabet and have them stop on the right letter, even though they didn’t know the alphabet the same way I did. It was a fun thing where you had at least four different languages of sign, everyone sitting down and trying to figure out how to say, “Hey, how are you? My name is—” We laughed so hard. It was a beautiful, random moment that I will never forget.
Cooper: I can imagine. That’s partly what I was experiencing, except I was the fly on the wall. I couldn’t be part of it all—I laughed, because I could tell everyone else was having such a wonderful time. Did you go to Rome?
Harvey: I have been to Rome. I went to Rome the last time in January of 2018. It was breathtaking. We went to Rome, and then we took the superfast train to Florence and spent a day there, and then back to Rome. I will never forget my trip to Rome.
Cooper: The last time I went to Rome, I interviewed a person name Roberto Wirth. Have you heard that name?
Harvey: I recognize the name, but I’m not sure why, I’ll be honest.
Cooper: He owns one of the nicest hotels in Rome call the Hotel Hassler. He is deaf and he reads lips in five languages.
Harvey: That’s crazy!
Cooper: (laughs) He’s an interesting person and really fun to be with.
Harvey: Next time I’m in Rome, it would be nice to wave at him from a distance? “What’s up?”
Cooper: You should go in and meet him.
Harvey: Oh, you know, people are busy. You don’t want to interrupt his life. But it would be nice to meet him.
Cooper: He would love to meet you. It’s a hotel where kings and queens and celebrities stay. It’s on the top of the Spanish Steps. It’s got an incredible view of the Seven Hills of Rome. You should just visit it, if nothing else.
Harvey: Oh, gosh, yes! I love visiting—I love buildings and architecture and history and art, so any time I’m in places like Rome, my brain just kind of explodes. It’s a beautiful time. ...
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