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Episode 14 Transcript

Published: Thursday September 21, 2023

A Symphony of Resilience | Amy Wang-Hiller

Amy Wang-Hiller’s Inspirational Journey through Music and Disability


Alycia Anderson: Welcome to pushing. Forward with Alycia, a podcast that gives disability a voice. Each week we will explore topics like confidence, ambition, resilience and finding. Success against all odds. We are creating a collective community that believes that all things are possible for all people.

Open hearts. Clear paths. Let’s go. 

Welcome back to Pushing Forward with Alycia. This is Alycia, and I am so excited about this episode today. Our guest today is Amy Wang-Hiller. She is a virtuoso violinist, born in Shanghai. She started playing the violin when she was three years old. 

Amy’s musical range spans from Baroque to Contemporary. She is a violin educator. She is a doctoral student at University of North Texas. She is the creator of the Thrive x Strive Musician podcast. 

She advocates for her own illness. She encourages others with disabilities to empower and raise awareness for their rare diseases and spinal cord injury. Over the past two years, she has had spinal complications stemming from cervical instability to tethered cord syndrome. 

Amy has kept performing all through this. Adapts her performances with her unique understanding of her own body and function and her anatomy. 

Amy, thank you so much for joining me today. 

Amy Wang-Hiller: Well, thank you so much for inviting me, yeah.

Alycia Anderson: Amy and I attended sort of a women empowerment retreat weekend called the Rollettes. We met in passing, but I do not think we really like had an opportunity to dive into conversation. 

Amy Wang-Hiller: No.

Alycia Anderson: And after the Rollettes, there was all this posting going on in Instagram, and that is where our paths crossed. I saw you post about who you are and what you do, and there was the most beautiful picture of you sitting in your wheelchair wearing this beautiful black dress playing the violin, and it is one of the most stunning pictures I have ever seen of a disabled woman in my entire life.

And I was like, I need to meet her. So, thank you again so much for being here and I am so excited to dive into your musical talents and all of it, to get started can you share a little bit about you and your disability? 

Amy Wang-Hiller: I grew up in Shanghai and there was a lot of small little telltale signs that I have something different like of something wrong, but then, like it is all resolved like magically I will say like, you know, like you have a flu or something and then people just recovers.

But then I had multiple and recurrence and then my parents are like, you know, Chinese medicine. And so, I get better for a couple years and then something flared up. And especially like when we went through like the teenager year like puberty and our body changes and because of my genetic disorder Ehlers Danlos Syndrome it is involved in literally every parts of our body.

Like you know the cells like the soft tissues and ligaments, everything.

So, when I was literally a teen, I started developing something called POTS. So, it is Postural orthostatic tachycardia syndrome, and so basically, it is like you change positions really quickly and you get really dizzy and lightheaded. And, because the vessel is not able to pump up the blood to your brain really quickly. So, you get like this kind of like sudden racing heart rate.

And I was told that because my mom said Ohh. Some people also does… like some people do have it and I did not know by the time she means by some people who is going through their what you call it like, you know their 50s and 60s, like when they are menopause and then they will feel that way. And I was like ohh, so it is kind of normal.

So, I just went on my life, you know, like and then it was not till I would say coming here to North Texas study my doctoral and I start having more symptom and more symptom like. And it just, I would say the worst part is me trying to go through a deprivation tank and think that, wow, that is such a relaxing moment.

And what I did not know is that it really relaxed your muscle, but the muscle is what holds the head or neck, you know together when the ligaments is loose, when I got up from the deprivation tank I was like, I really feel like my head is gonna fall off my neck.

And it was a scary moment and I started just holding up my head for the whole entire week. So, I end up doing so much research that come across with a neurosurgeon. That does tethered cord and talk about the spinal bifida 1/4 to me. Be like a very likelihood to have tethered cord syndrome and especially with you know the combination of Ehlers Danlos Syndrome and then with all the other like a package of like how symptoms developed.

I thought all these symptoms I can just present it to the doctor, but no one listened!

But I went with my gut… so it just gradually kind of like making me feel more confident at what is going on that I should believe my body and tell me this all the signals.

Alycia Anderson: That is where your advocacy comes in. I love this because I have had a lot of different but similar situations in my own life where you really have to be. We have to be the experts in our own bodies and advocate loudly or things get missed. That could be very, very dangerous. I know you are very focused in your platform on self-advocacy, specifically in medicine, can you talk through that a little bit? 

Amy Wang-Hiller: So, I am a person with a lot of insecurity. Previously because mental health. And so sometimes I doubt myself a lot, and I will sort of like being very soft spoken compared to one of my really good friend here and she was very opposite.

But I think you know, we kind of have to have some medium ground, right?

It just to me like there is something that we need to keep pushing through. So, you have to do your part, but then you know when you have to stop and try to find the right doctors. So, you will not exhaust your emotional capability to keep that self-advocacy going. And I think it is just learning from my history.

I think a lot of time you have to be confident in your own body knowing like every signals, every sign that is telling you something and you should believe in it. 

We really have to find the right doctor, especially with rare diseases.

They have to have a really desire to learn and curiosity. And this brings up another problem as I recently have been told, I am the outlier was like what you mean by outlier and I tried to research about it was like that is interesting. It is actually a data, a way of they manage data to say there is outlier so we can delete that. No, we do not need that.

But in the healthcare system that does not work.

I feel like in the healthcare system, it is just like, you know, me as an educator, you know, my student, am I going to be like ohh, they are the outlier. I am gonna just, you know, get rid of them. You do not need to learn violin. You know it is too hard. It is not possible. You are too rare.

But what happened is they think that I am the outlier. I cannot help you so. Find someone else. And so, I think this… It has to be changed in a way that you have to think about outlier as a… or like you know all these people who actually developed such severe symptoms to not be the outlier.

Alycia Anderson: And maybe what needs to happen is the medical field needs to start to look at…  I am air quoting outliers… as an opportunity to dive deeper and learn more. 

That is really important work that you are doing. 

It is intimidating to challenge your doctor, but it is required of us. Can we shift a little bit? 

Amy Wang-Hiller: Yeah.

Alycia Anderson: Your skill is being a violinist. You…

Amy Wang-Hiller: Yes.

Alycia Anderson: This has been a lifelong journey for you. Sounds like you probably have had to adapt your skill over and over and over and over as your disability or your chronic illness has progressed. 

Amy Wang-Hiller: So, when I just starting having that symptoms, of course it is just lower half of my body, right, but actually evolves so much because nowadays we use iPad, we use foot pedal to turn the page and I love that.

You know, when you play in chamber music and you can just like, you know, do that tap and then on the beat and it is like it is fun and it is so easy to carry, you know, iPad.

But I cannot do that anymore. And I well, actually I can use my fingers tap. But that time, like, you know, just lower half of my body. But when it gradually moved up, that is when I started noticing the difficulty. And I would say that every single time there is a stepwise progression.

I will pick up my violin and have a little silent fear of if I cannot continue.

And it is not just even starting to play. Is involved in the beginning of like, you know, picking up your violin, putting on your shoulder rest and especially with the bow. So, our bow actually have that tightening effect like, you know, you have to tighten the bow hair, the horse hair. Or whatever we would call it and it is tight, you know, like it is actually difficult.

So, I have to learn like how the joints are function. The max like… I always talk about the max range of that our fingers. So, using that to be able to leverage and to turn the bow. So yeah, even before I start and you have to evolve in your tuning.

So how do you even tune your violin if your hands are weak? But I do have spasticity and that helps. So, it is just gradual learning experience. So, it is like always you realize that there are things that can do to gradually like recover from the loss of function.

Yeah. The longer you go on with the functional loss is, the harder it is, to be honest. But like the same thing like every time, you just have to have that mindset of, like, I am gonna keep going.

Even to this day I get so many comments saying, hey, I think you just have functioned in large disorder because you can play so well. I was like, that is exactly my residence like the residence of the neuromuscular doctor said to me that oh you can maneuver your bow so well. But the fact is, well, there is a lot of function I do not have right. And I also have to compensate for it. And the only thing is probably just me, I would know.

No, but of course I always wanted to explain to people. And if you do not know, I am trying to work on this project. I do not know if it is gonna eventually go through. I am hope like finger crossed, hopeful that it will be my dissertation topic.

Basically, talking about adaptation techniques and all these positional modifications and stuff so with that you are able to basically free your knuckles, like I said, like with my fingers, you free your knuckles and you can drop down your fingers and you do not need that much of force to really play a note, you know?

And people always think that I have to press my finger so hard, but… Well, have you tried not to press your finger so hard and still can sound just fine?

So, I think you know people are trying too hard using 100% to play something that you can might just use your 30% of your effort.

Alycia Anderson: This is a perfect time to take a quick break. You are listening to Pushing Forward with Alycia and we will be right back.


Alycia Anderson: Welcome back to Pushing Forward with Alycia. This is Alycia. Our guest today is Amy Wang-Hiller. She is a virtuoso violinist. She advocates for her own illness. She encourages others with disabilities to empower and raise awareness for their rare diseases and spinal cord injury. 

It is just like any other industry. It sounds like Amy, when you are trying to advocate for inclusion of people with disabilities to be a musician, to do any certain type of job, we need to challenge the people in the environment they are hiring to think outside of the box and how you can adapt a specific task. 

What does it look like to be a disabled person… woman in music from an accessibility standpoint, stigma? 

Amy Wang-Hiller: There is definitely a group like a group of people that in the music industry that will question you… will doubt you… are, you know, all that.

And I feel like sometimes unfortunately, sometimes you feel like you have to prove how you do it. Or you can do it right and there is also this scarcity initially that about me to share my story is that what if the orchestra that hiring me that do not think that I am able to play.

But essentially, they, when they believe you and then they will not question about it as long as you show up, you will be able to do things. You will be able to play through the concert that no problem with very high standard. Same thing that.

They will feel like, yeah, you are qualified.

Alycia Anderson: When I would go to job interviews, I would hide my disability til I would get there because I just would feel like I would not get my first wheel in the door of opportunity, even have the conversation. 

So., I think you are really brave to go on these auditions and roll in there and like, proudly share your beautiful talents cause you are so talented and beautiful and gorgeous. 

And I think that we are in this space in our environment and society today we are seeing these differences in humans and including disability and it. Is so impactful. It is so powerful. 

Amy Wang-Hiller: You know, in the acting world, people say always like, you know, you wanted to believe in that character. So, if you believe that yourself is confident and you roll up to the stage and just believe in yourself and eventually you…like embodied that type of character and it becomes you.

And if that is positive, then you take that. If it is not, then we change, we modify, we do something else.

Alycia Anderson: Where do your current projects? 

Amy Wang-Hiller: The biggest one is probably my dissertation. I wanted to really work on talking about my story from the side of like how I adapt and how I can encourage others to adapt.

So, I think neuroplasticity is kind of being underrated sometimes, and it is important, especially in like, you know, music world, especially instrumentalist. We need those kind of neuroplasticity to we actually do that every day, right? And we learn things from the pattern, learn things from repetitions.

And so, I think it is important for us to keep doing that. And so, then the rest of the whoever like…you know, essentially giving up on music, violin, or whatever instrument due to their physical illnesses.

And it is gonna be like giving that another chance because I think you should never give up your true passion.

It is just very… I do not like to be like depressed and stuff and… but it is a depressing moment that you have to give up your true passion.

And it does not need to be.

Alycia Anderson: Yeah, and I think that leads us into your mantra of never give up on your true passion.

And at the end of this podcast, we like to talk about, like a pushing forward moment, like is… Can you talk through maybe a little bit more on what that means to you like personally? 

Amy Wang-Hiller: I think one is that to know what is your true passion. And then I hope that everyone is able to find their true passion. And I think if they do not.

Just keep trying different things and feel like, you know, you can find something that you love so much, you can overcome all these hurdles.

And the other thing is just because whatever function loss, whatever, you know, we are talking about aging, talking about, you know, with my professor even recently talking about her illnesses and, you know, we are all growing older and then there is with illnesses going on developing and it is OK that you know these things are not gonna be stopping you from pursuing what you love. And finding different ways.

I would say well, you know I can still move my fingers. Ohh I can still, you know, do this, this, and this.

So even at the end of the day you cannot move anything and now there is the technology you know there’s so much thing… new things coming up and you can always find a way to play music. Or doing whatever painting, doing things you like.

Alycia Anderson: I love it. That is so beautiful and I absolutely agree and I think adaptability is key in all that. And I love it that that is like a big focus because I think finding your true passion, never giving up on it is just having to adapt along the way. Did we miss anything? That we need to share. 

Amy Wang-Hiller: You know also take a risk. And so, you might find something different, something beautiful, something that you can do more than you are doing right now.

Alycia Anderson: You find a path forward to achieve. So that is beautiful. 

Amy Wang-Hiller: Yeah.

Alycia Anderson: Will you let our listeners know how to follow you on all of your platform? 

Amy Wang-Hiller: Yes, mainly like I am on Instagram, so my username is thrive on wheels with underscore. Basically, you can find me with my website I have posted some of my videos and there is all the links and including my Thrive x Strive Musician Podcast.

And I just love everyone to, you know, reach out to me about any questions, you know, even. If you are a fellow disabled musician and want to talk more, I love you in on my podcast and share more stuff.

And if you were a formal like, you know violinist or, you know, violist or anything like that, you still want to continue and you want to pick up. And I would love to helping you out.

Yeah. And I work with anyone very inclusive and I just try to find a way helping you out and then also helping me out.

Alycia Anderson: I love it. Are you working with kids and adults both? Or 

Amy Wang-Hiller: Yes.

Alycia Anderson: OK, beautiful. Yeah. Disability or not? 

Amy Wang-Hiller: Yeah. And I love to work with someone who has disability because I think that you should never exclude anyone with disability and thinking that they are not qualified enough to be a good violinist in the future.

You never know. We only have to try.

Alycia Anderson: Congratulations on all your successes. We are going to share a little bit of your music so everyone can hear the beautiful art. That comes from who you are. And thank you so much, Amy, for spending some time with me today. It was my absolute pleasure to meet you. You are an amazing woman. You really are. 

Amy Wang-Hiller: Thank you. Thank you so much.

Alycia Anderson: Thank you to all of our listeners. For spending time with us again. Today this is Pushing Forward with Alycia and that is how we roll on this podcast. We will see you next time.