Faces Behind the Screen: Mandy Harvey
Amanda “Mandy” Harvey is a singer, songwriter, and inspirational speaker who exploded onto the scene in a whirl of gold confetti as a contestant on America’s Got Talent. Mandy’s original song was rewarded with the coveted Golden Buzzer, and she continued on to take fourth overall in her season.
Her music career spans practically her entire life; having started in choirs as a child, Mandy eventually attended school for vocal music education. She was living the dream, until she lost her residual hearing to a connective tissue disorder that had progressively worsened. This doesn’t mean the dream stopped – it definitely changed though, according to Mandy. She began incorporating American Sign Language (ASL) into her music, and singing became an expressive outlet like no other.
But it’s certainly still work for Mandy – on tours, she often sings and signs simultaneously. She effectively speaks two languages at once (singing in English and signing in ASL), all while keeping time through the vibrations of the stage. On top of her musical career, she brings her inspirational messages – which she calls “Wisdom for Life” – to others on speaking tours.
Below, Mandy shares with us the story of her music career, how to be an ally to those who are d/Deaf and/or hard of hearing, and how the COVID-19 pandemic has impacted both her personal and professional lives.
How do you identify? d/Deaf, HOH, or somewhere in between?
MANDY HARVEY: I grew up hard of hearing [HOH]. Then, when I went to school for vocal music education, I lost my residual hearing, so now I’m profoundly deaf in both ears and I identify as such. It is a funny question, though, because everybody has their own way of “branding themselves.” You live with yourself, so you know who you are, but other people are very quick to judge. It’s nice to be able to say, this is who I am.
There’s a huge spectrum and there’s varying degrees–you can be deaf, and it doesn’t mean that if there’s not a jet engine next to your face, you’re not going to hear anything. That’s why I like to say I’m profoundly deaf, not completely deaf. To be completely deaf, I [wouldn’t] have any working parts of my inner ear. My eardrum does vibrate sometimes, but it doesn’t transmit information into my head.
Did you or do you know sign language?
MANDY HARVEY: Yes, it’s my preferred language. When I sing on stage, I always sing and sign, or if I’m playing an instrument, I always have an interpreter. I have two different music videos from my last album, both in sign, and it’s a beautiful language.
In an interview like we’re having right now, I’m allowing myself to speak for myself because I have the ability to speak clearly (at least today, I don’t always). But it’s a lot of taxing mental work to speak this clearly. It takes a lot of speech therapy, a lot of time, and a lot of frustration. It’s exhausting, so I don’t always choose to speak–not because I can’t, but because it’s so much work. And sometimes, I just don’t have it.
Did you grow up learning sign language, or did you have to learn it after losing more of your hearing?
MANDY HARVEY: I was raised in a hearing, English home, so my sign language has elements in it that are more English than true ASL. That’s because that’s how I grew up, but now I know I’m one of the lucky ones, because most people in my family have learned sign language. And that is an unfortunately huge rarity.
I had interest in it before because there was always this daunting fear of [losing] your hearing at some point. My mom knew signing for worship team and my dad’s college roommate was deaf, so he actually knew some from way back then. But my real education of sign language started when I had more serious hearing loss, which I feel like was a shame.
I wish sign language had been a part of my entire childhood. All of the conversations that I was excluded from, the constant frustration, and being isolated–I wish that hadn’t been my experience.
Tell us a little bit more about your musical journey.
MANDY HARVEY: I started with music when I was very young. My mom put me in a choir class when I was about four, and being hard of hearing it was always a difficult thing for me to socialize, because you’re constantly lip reading. Now, for conversations like this I have captions on the bottom, and I’ve got other things going on in the background so I can understand what’s going on and follow you. But back then, there really wasn’t much other than just lip reading. So I didn’t talk to most people, and I was very shy and withdrawn.
So my mom put me in choir, because she knew I loved music and she thought, “Let’s see what happens.” I remember sitting in this class, everybody else in the room was way older than me–adults–and they handed me the sheet music they were working on. It was the first time [I was] able to sit in a room, everybody was looking at the same thing, and I could follow along because all the words were there in black and white. There wasn’t any guessing, they told us where we were, and then I followed with everybody. It was this epiphany moment of [realizing that] the ease of communication is out there, I just don’t always have it. I loved the community aspect of music–we’re all working together as an amazing team. It doesn’t matter who you are, how old you are, what your background is, how much money you have, your political beliefs. We’re all trying to be a team to make something beautiful.
My goal with music had always been driven toward education, I did not want to be a performer. The idea of having people stare at me for a living seemed a bit like a punishment, I was uncomfortably shy and super awkward–when I had to give a presentation in school or I did stand up, I used to pass out, throw up, or just cry and run away. But when you’re a part of choir, you’re a part of a force. And so people aren’t just looking at you, they’re looking at the choir, so you became more anonymous. When I was in high school, I was in four or five different choirs at the same time.
I think that there’s aspects of being hard of hearing that made me better than others. I’ve always had really good pitch. A lot of people tell me I have perfect pitch, but I don’t really know what that means–I know what it means, but it seems very arrogant to say, so I say I’m near perfect pitch (because it gives me wiggle room to be wrong). But I was never able to hear myself over the people next to me, so you get used to trusting yourself. And it was a really beautiful time for a little while.
You were already in the music world when you lost your hearing, right?
MANDY HARVEY: Yes, so eventually I went to school for vocal music education and I was living my dream. But then after about a month of being in school, I lost the ability to understand my teachers talking at all. Even in the front row–in the “spit zone” is what I like to call it–at the very front and center, the teacher can breathe on you, and you’re the only person who can’t fall asleep. Even in that spot, I couldn’t understand my teachers anymore.
We thought maybe I had another ear infection. I had ear infections, surgeries, and complications my entire life, so sometimes my ear drums stopped vibrating. Or I have perforated eardrums that are 80% a hole instead of an ear drum… But it didn’t go away. It was getting worse. It turns out that I lost about 40 decibels of sound in both ears by then, after just a month.
They’re not really sure when it started. It might have started when I was still in high school, but it was just very obvious at a certain point. You spend your entire life lip reading, it’s difficult to know when you’re not actually hearing them anymore. By Christmas, I was labeled legally deaf, which put me at 55-60 decibels down in both ears, got fitted for hearing aids, and started my second semester with hope. It wasn’t enough, and I progressed further down.
Now I’m at 110 decibels down in both ears. It was a very weird time, because at that point, we didn’t really have a lot of good useful technology, either. You had phones–they had just morphed from being flip phones to the sliding phone. But there weren’t captions on videos, or ways to call people and have clear captions or anything like that. It was kind of a death sentence, as far as communication goes. And for the music industry, for education, there wasn’t another option to continue. So I was dropped from the music program, and I had to start relearning the world around me.
How does speaking translate to singing for you, or how do they differ?
MANDY HARVEY: Well, with this conversation for example, I already have a mild headache because it’s just a lot of work. Normally when I’m speaking, I’m actually singing in my head because I pay more attention to vowel shapes when I’m singing. I’ve put so much effort and work into pronouncing things, and all of the speech therapy really starts kicking in for me. It’s easier to hold on to it when I’m in my head for singing.
Singing is tiring. It’s beautiful and I love it, but it’s work. It’s work to be clear, to lift the palate in the back, to push the air forward, to understand your placement of your tongue against your teeth. There’s so many different details that you’re thinking of at the same time–I think about how I’m pronouncing all of the words, what the notes are, and singing in English while signing in ASL (which are different languages!). On top of all that, I have to feel the vibrations of the floor to count measures and to know if I’m in time with the band. So when I’m on stage, I’m in hyperdrive. I’m marathoning it, and I’m addicted to it now. But normally, I’ll take naps or long pauses throughout the day because I have to. My brain can’t handle that much information and I just get exhausted.
And when it comes to conversations about being an ally, sometimes, I just need to not be a part of a group conversation. If I’m not looking at other people, I either don’t care about the conversation or I need a mental break. I can’t keep up, and I don’t want to sometimes–you don’t have to give me every single piece of information. I need mental naps, even if my eyes are open it’s like my brain is shut down.
In your experience, what are some common mistakes that hearing people make?
MANDY HARVEY: A lot of the mistakes people make is that they assume (based off of a stereotype) what you need, and then dictate that to you. Normally, people just shout or they mouth things really big because they think that will help you lip read. In reality, it makes it so much worse when I can’t understand you at all and I’ll never get used to [the way they speak].
Or they’ll order food for you, because they think you’re going to struggle and it’s going to be awkward. They’re trying to save you somehow because it makes them feel good about themselves. It can be uncomfortable, because they want to make it faster, easier, or more like how they’re used to, but to take over somebody ordering food is not normal, because you’re making a judgment that they need help.
Sometimes people who don’t know sign language (except spelling their name) will think “Oh, I know this language. Hold on. Let me sign this,” and it’s like OK, this is going to be a while. But I’m patient with them, because I know that they’re trying to learn my language. It doesn’t ever offend me that they’re signing their name.
Do you have any “best practices” recommendations for allies?
MANDY HARVEY: I think the best thing that anybody has ever done is just ask me, “How best can I communicate with you today?” [It feels like] you actually care how I want to communicate, because everybody and their needs are different. When you ask those kinds of questions, you’re saying “I’m not making any assumptions about who you are, I just want to be a support system to you, however you need it.”
I know a lot of different people who have a lot of different differences. Not everybody needs help, and a lot of people do just fine. As an ally, I think the simple things like just being patient and polite mean a lot. I love when people even learn phrases like “how are you” or “hi” in sign language, because they know that that’s my preferred language. It means a lot to me. However, it can be tiring if the entire time that we’re together is me acting as an encyclopedia for you.
Could you tell us more about the technologies you use?
MANDY HARVEY: Nowadays, I have captions for my phone calls. So it goes through automatically, and I believe there’s a captioner on the line. It just depends on what system you’re using.
It’s nice to see that a lot of videos on YouTube and stuff like that have an automatic caption feature. However, the inaccuracies of those are ridiculous and they don’t caption music. When you say, “Hello, how are you,” and then you sing, “Hello, how are you,” [the software] doesn’t understand that you’re still saying the same thing. And that creates huge void that’s missing.
I get very frustrated with the lack of availability. So I started a Patreon account where once a week, I upload a mini concert that I caption myself by hand using a program called Kapwing–mostly because I can’t afford to pay somebody to caption every video that I do, and also because of the fact that it’s music, there are no recognizable captions. Though sometimes when you put it through to auto-generate captions, you get some of the funniest sentences. I think I want to write a song, put it through the automatic captions, take those words, and then make another song out of it, because they’re so actively bizarre.
Otherwise, I use a lot of FaceTime so that I can sign and lip read as well on my phone now. [Phones] are an amazing access point, because you have things like iRing, so you can actually see when people ring the doorbell. Instead of relying on hearing the doorbell, it vibrates on your phone whereas before, I used to have a flashing system so you’d know someone is ringing the doorbell. But now I always have my phone on me, so it vibrates, and that’s much more usable and less annoying than having a giant, flashing light.
How has technology changed during COVID, where we’re doing a lot virtually?
MANDY HARVEY: We’re doing [so much] virtually, it’s amazing. The problem with having everything virtual is that there’s not a lot of consistency across the board. Microsoft Teams, for example, has beautiful captions, but it’s not the same if you’re using Zoom or another platform.And it’s like, why can’t we share this [resource] and have it be plugged in on both? Why isn’t it a priority?
Speaking of COVID, have you found mask-wearing causes a struggle for yourself or others who rely on lip reading?
MANDY HARVEY: Oh, it’s a mess. It’s a full cutting of communication. Even just going into a grocery store–normally, there’s a person cleaning off carts, and they always say, “Hello.” But if they don’t actively wave or look at me, I don’t know that they’re acknowledging that I’m there. So I just keep walking. And then you have this air of feeling like you’re constantly rude, and people will treat you like you’re rude. When I don’t answer them, I can see them shouting or actively moving more, but they don’t seem to understand that that’s not going to help.
And so a lot of people–this is a really sad reality, but it’s something I see more and more–when you cause somebody frustration, they just aren’t willing to deal with you anymore. They’ve got other things to do. They notice that you’re a “problem,” and they walk away, even if you’re asking for something or asking for help.
How have you been able to adapt? Do you have any recommendations?
MANDY HARVEY: I normally carry my phone with me, and I can type out what I need. That’s my go around, but now the problem is that people have a tendency to grab your phone to type back to you. And that’s obviously a COVID problem, because now you’re touching my stuff. Or cashiers will write things out for you or give you pen and a paper, but then they’ve physically touched those things as well. I keep Wet Wipes and wipe my phone down, and try to stave that off as much as possible. You could carry around a lot of hand sanitizer!
So you could just carry around a lot of hand sanitizer. I’ve got wet wipes, and I wipe my phone down, and then try to do my best with trying to stave that off as much as possible. But the communication is just gone. It’s gone.
The worst is that people know you lip read. A lot of people in my town know me, it’s hard not to see the redhead walking around. But they’ll pull their mask down because they know that I lip read, and one part of me is thankful because I can finally understand what’s going on, but then the other part of me is like wait a minute, this is the worst possible thing they could do now. I’ve given some people clear masks so that they can communicate with me, but it’s not like I can supply the entire town with clear masks. That’s ridiculous.
How has COVID impacted your music career? What were you doing pre-COVID, and what have you been up to since?
MANDY HARVEY: Pre-COVID, I was very busy, constantly on the road and working on a lot of music. And that has stayed true after COVID, I’m working on music. But all of my gigs have just died. There was a period around March 13 where within 48 hours, I lost every stream of income and every gig I had until October. And then April came, and everything from October to spring of the next year went away. Now it’s fall of next year. For now, there’s at least a year and a half of nothing in person. So you have to change how you go about things. I’ve been doing some virtual concerts, virtual conferences, and those kinds of things, but truly just trying to get by–I think everybody’s just trying to get by. But I’m sure there’s other people who are loving COVID and they’re rolling in it, because they own Zoom.
It’s been hard as a musician, because virtual doesn’t do it for you. The whole point of being in front of people is not because–well, for me, not because I need them to stare at me–but because you get the community aspect, which was always my number-one goal. When it’s virtual, it’s not real. It’s difficult because I’m so used to doing meet-and-greets after my concerts, hugging everybody. Some people want to ask you questions, say hi, or take a picture with you. But then some people just want to give you a hug and cry, and I’m not able to be that person for them right now. It makes me feel like a failure in terms of what I’m supposed to be doing with my life.
On the other hand, I have a lot of autoimmune issues, as well as Ehlers-Danlos Syndrome. All of the stress causes flares, and many of the symptoms of a strong flare mimic a lot of the symptoms now associated with COVID. So then there’s this overwhelming fear of, “Oh, I have COVID now, because my body is shutting down.” Then you’re told not to go to the hospital, because you don’t want to actually get COVID, so I’ve been getting constantly tested.
Is there anything else you’d like to share before we finish up?
MANDY HARVEY: Let me think… I’m an ambassador on the board of a nonprofit called No Barriers. One thing that I did during COVID is co write a children’s book! The cool thing about this book is that parents can upload photos of their child (through a secure site), so they can become the hero of the story.
Every book is custom to the child, because 0.5% of all children’s literature include a person with a difference or disability, which is virtually nothing. We wanted kids to be able to see themselves being successful. Every kid gets to be a part of this adventure together, and of the other two [characters] in the story one of them is always in a wheelchair. That way, there’s always a kid with a difference right off the bat. We were really tired of there not being enough books with adequate representation, and we wanted it to be customizable so that every kid can be the star.
Faces Behind the Screen would like to thank Mandy Harvey for participating in our storytelling project. If you’re interested in sharing your story with us, fill out our nomination form.
Faces Behind the Screen is a storytelling project focusing on members of the Deaf and hard of hearing community.