Interview with Maria Pendolino, Voice by Maria

I interview Maria Pendolino about being a disabled voice actor and learning to navigate healthcare bureaucracies and advocate for yourself.

⁠http://www.voicebymaria.com⁠⁠http://www.disabledvoiceactors.com⁠⁠https://www.linkedin.com/in/mariapendolino/⁠⁠https://www.instagram.com/mariapendo/⁠⁠https://www.tiktok.com/@mariapendo⁠

Transcript

Brandy (00:01.432)
Hi, this is Brandy Schantz and you're listening to Living Chronic. Today I'm here with Maria Pendolino. She is a voice actor, an award-winning voice actor, and runs Voice by Maria. Welcome to Living Chronic. Thank you for being here.

Maria (00:18.867)
Absolutely. Thank you so much for having me. Yes.

Brandy (00:21.552)
So I love your story. You have psoriatic arthritis. When were you diagnosed with that?

Maria (00:29.494)
So I was diagnosed when I was 22 years old. I had just graduated from college. I grew up in Buffalo. I went to college in upstate New York, and then I moved to New York City. And it was my first time living in a kind of majority pedestrian type of environment, a metropolitan urban environment. I definitely grew up in kind of the suburban.

Wasteland where you park in your garage you get in your car you drive where you're going you drive back, right? So I was walking around New York City, you know walking five blocks ten blocks up and down the stairs to the subway and I started to experience just like aching knee pain ankle pain I had like this weird swelling on the side of my knees and At first the first doctor I saw told me that the problem was the old Navy flip-flops that I was wearing

Brandy (01:24.053)
Oh goodness.

Maria (01:24.694)
And I was like, okay, yeah, I get it. I'm doing a lot more walking than I'm used to. I'm a fat person, so I'm carrying around a lot of weight on my knees and my ankles. Maybe I need better footwear. So I went and got custom orthotics made, and that made the problem worse. They were just aching, my legs and my knees were aching. So it was a journey to get the diagnosis. One doctor said that my kneecaps sat too high, and that was the problem.

Brandy (01:38.852)
Hmm. Okay.

Maria (01:52.63)
Another doctor said that I had a like strange and rare cartilage issue. Um, and I was just not getting the right answers from folks and I was not finding relief. Um, so I actually paid out of pocket to see the like number one rated orthopedist in New York city, according to like New York magazine, like a fancy fifth avenue. Office.

And he looked at my x-rays and he said, I don't think you have a orthopedic problem, I think you have a blood problem. And he gave me the name of a doctor to see at the NYU Hospital for Joint Diseases and Rheumatology. And when I described all of my symptoms and everything that had been happening to me, the doctor said, is there anything else? Is there anything else in your entire medical history, even if it's not related to your...

Brandy (02:24.387)
Mm.

Maria (02:45.374)
your knee pain, your ankle pain, is there anything else you can think of? And I said, well, I have psoriasis. You know, it's very mild. It shows up on my scalp. Sometimes I get patches on my, you know, elbows and my ankles, but you know, I'm lucky that I don't have like lesions all over my body or anything like that. And he like whipped around in his chair, grabbed a pamphlet and handed it to me, and it said, psoriatic arthritis. And I opened it and it had all of the symptoms that I had been experiencing. And then also like,

Brandy (03:09.774)
Hmm.

Maria (03:15.326)
frequently appears in people who also have psoriasis. And I was like, aha, and it was like the light bulb moment. So it was a journey to get that diagnosis, but yeah, it happened in my early 20s.

Brandy (03:21.545)
Mm-hmm.

Brandy (03:27.604)
And I think that's true for most of us. It's always that journey getting to your diagnosis. I wish it were easier, it never is. I feel like that's one of the biggest battles we have in life, get our diagnosis and figure out where from there. So at this point, you're living in New York City, you just graduated college and now you find out you have psoriatic arthritis. How did it change how you went about your life at 22 years old?

Maria (03:55.01)
Yeah, I think, you know, as I think as many people with, you know, chronic illnesses or autoimmune diseases discover, you know, it's a roller coaster. There were there were days at the early part, you know, of my diagnosis and the early stages of my disease, where I didn't even notice it, you know, there were days that I wasn't in pain, there were days that were fine.

Brandy (04:04.429)
Mm-hmm.

Maria (04:18.634)
And then there were days that were like, absolutely not fine. You know, New York City is known as being a very like hot, humid place in the summer. You know, that humidity, you know, really did a number on my joints. You know, I started, that was kind of like my first introduction to like the whole medical industrial complex. You know, prior to that, you know, I had been the kind of person who would like go to the dentist two times a year.

Brandy (04:38.883)
Okay.

Maria (04:43.85)
get your annual physical, started seeing the OB-GYN when I was like 16. But like, other than that, like I had been a relatively like healthy kid, healthy teen, healthy young adult. So like I didn't have any experience or exposure to all the things that make up the wild complexity of the American healthcare system. I remember one time like getting a bill back from someone, you know, because the specific

like the specific, like one provider I had seen at a practice was like not in network with my insurance, but like nobody told me that. So I get like a bill for like, I don't know, like $1,200 for a 15 minute appointment. And I'm like, what is this? You know, so you, you learn it's the baptism by fire, right? Like nobody prepares you for that. No one teaches you that. Um, so I think, you know, it's, it started out being like, okay, I've got, I've got this thing that I have to pay

Brandy (05:29.546)
Yes.

Maria (05:42.098)
I now have this additional emotional labor of like managing my care and then all of the paperwork and finances and things that go along with it. I was very fortunate at that time that I had a good job with good insurance. So you know, I was able to get care and medication and things like that. But I had a kind of I had a situation that really changed the course of my treatment.

At that time, I was taking Humira and doing the semi-monthly injections and getting them shipped to me in cold storage or whatever. And there was one day that I was just walking down the street in New York City with a friend and my vision just went completely blurry. It was as if my eyes were underwater. And I thought, I was like, something wrong with my contacts? Like what's going on? And then, as we got back to our office,

Brandy (06:12.704)
Mm-hmm.

Brandy (06:30.386)
Mm-hmm.

Maria (06:38.206)
I started to experience numbness starting from like the very, very tips of my fingers, moving up my hand, up my arm, all the way to the point where like I couldn't move my arms anymore. So I called a friend of mine from college and I was like, hi, I'm getting in a cab. I'm going to the emergency room at NYU. Can you meet me there? Like, you know, I don't have any family in New York City. This is definitely a situation where like you normally would like reach out to a parent and be like, please help. And I spent several months seeing specialist after specialist.

Brandy (06:47.35)
Mm-hmm.

Maria (07:07.834)
I saw a special hematologist, I saw a neuro-ophthalmologist, I saw a neurologist, I had a ton of appointments with my rheumatologist, and everything was kind of inconclusive, and the decision was that it may have been Humira changing my blood chemistry and changing...

you know, my, my body's ability to clot and whether my clotting factor was off, it was, it was this whole thing. So I stopped taking humera. And at that time, there weren't a lot of other options that didn't have the same mechanism of action. Um, psoriatic arthritis, psoriatic arthritis treatment has come a really long way in the last 10 years. And there's several new options. You know, you've got your O'Tezla's, your renvokes, your cosetics, like so many more options besides just at that time, it was like humera and Braille

Brandy (07:53.166)
Yes.

Maria (08:03.082)
So I stopped taking something for active treatment and then moved on to just symptom management, which was a lot of Advil, a lot of physical therapy, tissue massage, things like that. Many, many years later, my sister shared with me that she had a migraine aura, and her migraine aura mimicked the symptoms that I had described.

um, from this episode that I thought was caused by Humira. Her vision went blurry and her arms went numb. And I said, that is very interesting. And then in 2019, I had another episode where my vision went blurry. I was sitting in front of my computer and suddenly it was as if a screen saver had started on my computer and I was seeing these waves like go across the screen. And then I started to feel the numbness in my arms. So essentially.

Brandy (08:34.553)
Mm-hmm.

Maria (09:00.558)
12 years prior, I had been taken off a medication that was working because it was assumed that it was that caused this episode that I had. And actually it turned out to be a migraine aura, just completely misdiagnosed. So that kind of changed a lot of things for me because by being off of an active treatment like Humira for the number of years that I was, it allowed a lot more joint.

Brandy (09:05.889)
Mm-hmm.

Brandy (09:11.661)
Yes.

Maria (09:28.818)
degradation to progress because at that time I was only able to manage the symptoms versus addressing the root cause. So it had a really impactful place in my chronic health journey and also my disability journey because ultimately that led to my joints degrading to the point where I needed to have a bilateral knee replacement at age 32. So it was really that roller coaster of ups and downs.

and then moving towards more chronic health issues that led to like disability progression. And it moved fast, which I think people, arthritis is interesting because I think people think of arthritis a lot as the osteoarthritis that we all know from the Tylenol commercials and old people gardening and like rubbing their hands. Like that's the resulting arthritis that comes with the joint damage, but the autoimmune arthritis that we have in

Brandy (10:05.836)
Yes.

Brandy (10:15.576)
Thank you.

Maria (10:26.346)
you know, rheumatoid arthritis in like spondylosing and colitis and the psoriatic arthritis, all of those types of things, you know, you have this root issue that then causes that resulting joint pain. And the goal is to stop that root issue from causing you know, further damage. And I really got I really got taken off track, you know, by the medical community missing a very kind of easy

easy recognizing a diagnosis of a migraine aura. But because I wasn't someone who had migraines, that's not part of my medical history, that stone was left uncovered, which is a sad story. I've spoken to a lot, I've spoken to about it with my therapist a lot, and I've come to a good place with it. But it was a real turning point in my chronic health journey.

Brandy (11:04.259)
Yes.

Brandy (11:13.603)
Yeah.

Brandy (11:18.528)
It's interesting, I've learned the hard way that medicine really is a soft science. It's a soft science. And we're just doing our best to land somewhere in the vicinity of what our actual problem is. I did have a reaction to Humira that caused the same symptoms you had, plus I lost my ability to walk, all my muscles seized up. I started getting lupus rash and things like that, but it took doctors 19 months to diagnose that.

Maria (11:41.195)
Mm.

Maria (11:48.666)
Hmm.

Brandy (11:48.904)
even though it's pretty well known. So it's interesting to me to learn the way I have, how difficult it is to get to a diagnosis, how soft the science really is around medicine and different doctors can come up with different solutions and any one of them may be correct or not. But the one thing that's consistent with all of us is it's difficult and there's a lot of time spent with our therapists trying to get through what just happened to us in the medical community.

Maria (12:16.638)
Yeah, absolutely. And I think also just recognizing that, doctors aren't perfect, right? Not everyone is up to date on all of the latest everything. It would be impossible to be. And at the end of the day, you really have to be your number one patient advocate and your number one cheerleader. I believe very strongly that your relationship with your medical practitioners, A, has to be functional.

Brandy (12:39.268)
That's all I think.

Maria (12:46.89)
and you really have to find someone who you believe is listening to you, who you believe shares your goals and your vision for your health, and doesn't deal in absolutes. I think that's something that I've experienced as a fat person in this world who also, you know, has chronic illness and disability. A lot of times they can't get past the weight. Like the weight has to be addressed before anything else. Prior...

Brandy (13:00.141)
Mm-hmm.

Brandy (13:11.553)
Right.

Maria (13:15.63)
Prior to having my knee surgery, I saw three surgeons who just flatly said that they would not perform any surgery for me at the current weight that I was at, because they're managing to numbers and outcomes, and they don't want someone on the operating table who might not have the most desirable outcome. Don't look at the fact that the person can't walk anymore and that the person is in excruciating pain. No, just dismiss that and stick to the outcomes.

So I think finding healthcare providers who share your vision and want to help you achieve the things that you wish to achieve and then recognizing that it's a partnership. I've sent my rheumatologist articles that I've read on the patient portal. And I was like, here's something interesting. And I shared it with him. I actually remember there was an episode of Keeping Up With The Kardashians where Kim Kardashian was possibly being diagnosed with psoriatic arthritis because she was having

joint pain and she has psoriasis. And I shared it with him and I was like, I feel like this is an interesting thing for you to know about if it's not in your periphery, if only because she could potentially be an enormous patient ambassador for bringing attention to a condition that's widely misunderstood and is not as prevalent and talked about as other chronic health conditions. So yeah, I went to the patient portal and sent like an e-news article to my rheumatologist. And I think...

Brandy (14:27.19)
So.

Maria (14:42.986)
That's part of what it means to build a partnership with your healthcare providers and like, you know, be speaking the same language, but recognizing that they are human too, and they're learning with you, and they are not God, you know, whatever God or higher being that you may or may not believe in, you know, they are not the absolute. And I think recognizing that and working with them instead of just taking anything that a medical provider says to you as just like pure,

Brandy (14:52.558)
Mm-hmm.

Brandy (15:04.59)
You're right.

Maria (15:12.738)
pure truth, the gospel, whatever. I think the other way, having a partnership is a much healthier relationship when interacting with the medical community.

Brandy (15:22.636)
I think that's what's really important to say also, because many of us, it takes too long to recognize that. We go to the doctor, the doctor says, well, I don't see anything wrong with you. And you just shrug and think, well, maybe it's in my head. Maybe there's something wrong with me. Maybe I'm, you know, making this up. But the reality is that doctor may just not know what it is that's wrong with you. And you know your body best. I wish I'd known that, you know, day one when I was first diagnosed with Crohn's disease.

Maria (15:49.322)
Yeah, I think I would have loved a high school class about persistence. Persistence, just persistence in life. Instead of calculus, maybe let's talk about persistence and navigating institutional systems and how to handle bureaucracy and when to take notes and when to keep copies of things and how to balance your checkbook or whatever else. Just these life skills. If you never had a parent navigate...

Brandy (15:55.787)
Mm-hmm.

Yes.

Brandy (16:12.032)
Those are the important lessons, yes.

Maria (16:18.358)
the medical industrial complex, if you didn't witness that as a child, how do you know how to go into your adulthood and handle that? How do you know how to receive a bill and not just pay it and actually call and talk to someone about it? Who teaches you how to do that?

Brandy (16:32.825)
and say, hey, something's off here. No, you're right. And I think another point that is not made enough is, and it's especially so with women, but it can be with anybody. Often you walk into a doctor's office, especially if you maybe don't have much of an education or don't come from a certain social academic background, you get easily intimidated. And I myself have been talked down to by doctors.

And I've said, wait a minute, I didn't go to medical school, but I'm a pretty intelligent person. I have an MBA. I know how to read. I don't need you to talk down to me. And I know how to say that now. But I think many of us are scared when we walk in there, and when the doctor starts talking down to you and saying, no, I said this, a lot of people don't know how to stand up to him and say, no, I don't care, because I'm telling you this. And that's probably one of the biggest lessons in the line. Yeah. Mm-hmm.

Maria (17:24.49)
Yeah, I think it can be intimidating for sure. There's a power structure at play. There's an inherent power dynamic.

Brandy (17:31.304)
Absolutely. I mean, you walk into the doctor's office. Usually they call me Brandy. And then I turn around and say, hi, Dr. Smith. And that sets up the power structure right there. It really does. So it does change so much of your life and your life does progress more and more as a disabled person. I don't think it hit me personally that I was disabled when I was first diagnosed with Crohn's. It wasn't until...

Maria (17:40.79)
Yep.

Brandy (17:55.68)
I was going to my doctor saying, I can't get to work. I can't get to work. What am I supposed to do? I can't work from home. This was before COVID. And the doctor just looked at me and said, most people just apply for disability. And that was it. That was all I was told. Of course, you are a very, very successful voice actor. And I know you, I think, did you found the database for disabled voice actors?

Maria (18:19.626)
Yeah, so I'm one of the kind of founding admin members of this resource. We basically wanted to answer the question for casting directors, producers, people in entertainment when they are producing some piece of media, whether that is a animated cartoon, a video game, a documentary, or anything where a disabled story is gonna be told.

Brandy (18:44.844)
BEEP

Maria (18:47.882)
I think the disabled community is getting louder and louder and louder and saying we would like disabled performers and creatives to be telling this story. The community has kind of adopted the mantra of like nothing about us without us, right? The One in Four Coalition out of Hollywood is a great nonprofit organization that's doing a lot of advocacy around disabled representation in media.

And studies show that one in four Americans, so 25% of Americans have at least one disability, whether that's an invisible disability or a visible one. And yet less than 1% of the characters that we see on screen are portrayed with a disability, whether visible or invisible. So we've got this huge aspect of the population that's not being represented or shown in the media. And a lot of times, I guess the easy excuse that...

Brandy (19:28.506)
Okay.

Maria (19:41.062)
people have used was, oh, we just couldn't find something, you know, so we hired Bryan Cranston to sit in a wheelchair instead, because we couldn't find a qualified person who actually has, you know, a mobility disability to play the role. So we wanted to try to answer for that excuse instead of leaving people with this feeling that they couldn't find a talented disabled performer to play a role of a, you know, disabled

story, we wanted to give them a one-stop shop to find them. So with some other disabled actors, we collaborated on creating the Disabled Voice Actors database. So it's free for actors to list themselves in the database. And it's also free for casting directors, producers, anyone kind of in the entertainment sphere who is in some sort of hiring position for actors. It's free for them to access it. And they can sort the database by

gender, location, age, different types of disabilities. And we gave people the opportunity to not only, kind of choose their disability from like a pull down box so that it's easy to be sorted and found, but we also gave people just some free space to like, tell us about your disability in your own words, right? And I think that addresses, similar to what you were saying like.

you want to continue living and working with Crohn's, and one side is just saying, well, most people just go on disability. And it's like, well, what are the other options, right? So we gave room for people to tell their story about like, you know, what they are and are not comfortable with, or like what they feel that they can and cannot do, or what accommodations they might need to be successful. We launched at the end of December of 2022, right in line with International Day of People with Disabilities. We have just over

Brandy (21:09.761)
Yeah, exactly.

Maria (21:32.118)
550 actors listed in the database now, all across the country and actually some international actors as well. And as of last month, we had just over 85 companies, studios, casting directors who had requested access to use the database in their kind of day-to-day talent search opportunities.

Um, so it's been a, it's been a labor of love. It's been a lot of work. Um, but I'm very proud to collaborate on it with, um, the other folks who kind of volunteered to be the admins of this resource.

Brandy (22:05.876)
Well, and thank you. Honestly, thank you because it's not just one industry, all industries we can help each other, the disability community, so we can be more visible. So we can talk about it and say, hey, you know what, I can work. I'm not useless or I have many options. I just need some sort of an accommodation. And then of course, in a world like Hollywood, acting, Broadway, you know, for those of us who love Broadway, when you can see somebody that's like yourself.

It goes so far. I've talked to so many people, especially on this show, about Selena Gomez and Christina Applegate. It meant so much to me because I've hidden throughout my life every time I have to go on prednisone and I turn into a hermit. So I don't want anybody to see me. I don't wanna talk about it. I'm ashamed. And I've seen them step out onto the screen very proud and not apologizing for being on prednisone. And you know that

has done so much for me to feel better about myself. So that representation, seeing other people who are suffering from disabilities, whether they be invisible or not, who are dealing with life and doing it well, I think is really important. And I applaud you for doing that because there's so many people out there who are ready to work and who are ready to show themselves and be open and be that person that's a representation.

Maria (23:33.45)
Yeah, absolutely. I mean, seeing yourself represented in the media or in celebrities and household names is just so affirming in knowing that you're not alone. And I think also it shows that it's still possible to be successful while managing your disability and shows that everyone has good days and bad days, right? Even, I thought that...

Brandy (23:34.616)
for the disability.

Brandy (23:46.552)
Mm-hmm.

Maria (24:02.994)
Lady Gaga's documentary where she really opened up about her struggle with fibromyalgia and you know how she really had to stop to take care of herself and she needed to budget time in her day for massage therapy in order to be able to perform at night. Another kind of touchstone moment for me was seeing Selma Blair on Dancing with the Stars using a mobility aid. You know having a cane on a dancing show.

Brandy (24:30.325)
Yes.

Maria (24:30.39)
Like that shouldn't be revolutionary. Like I shouldn't be calling that out as like a cultural touchstone in 2023, but it was. It absolutely was. Or Ali Stroker, who's a wheelchair user, winning a Tony award. You know, the fact that she had been the first person on Broadway in a wheelchair who needed to use a wheelchair as opposed to a wheelchair being a prop.

Brandy (24:33.447)
Right.

Brandy (24:56.334)
right?

Maria (24:56.478)
Um, when she appeared in Deaf West production of Spring Awakening, um, you know, that was circa I think probably 2016 or 2017. That's wild. Broadway performances have been going on since, I don't know, the, the beginning of musical theater is like showboat in like 1930 something. And I think she was truly the first actor who needs to use a wheelchair in a wheelchair on a stage. Wild, wild, you know, and how.

Brandy (25:06.528)
It is.

Brandy (25:19.884)
Yes. It really is.

Maria (25:23.262)
and how revolutionary it was. And to see her win a Tony Award for her work in Oklahoma was just so affirming and to have the fact that she was in a wheelchair not even be an important part of the character. She's just a great singer and a great actor. Like that's important too, seeing disabled people just existing. Disabled people are parents, disabled people are someone's child, disabled people are your friends, your coworkers.

Brandy (25:42.456)
Yes.

Brandy (25:46.369)
Yes.

Maria (25:53.002)
Um, there was a show on Hulu, uh, that, uh, Julie Klausner and Billy Eichner were on. It was a very, uh, acerbic, satirical show rooted in pop culture. And there was a fantastic, uh, disabled actress named Shannon DeVito, who's a wheelchair user in one episode. And she was the mean girl. She was nasty and was like the nemesis of the main characters. And I just loved that. The fact that she was in a wheelchair and the fact that she was disabled was...

not at it was never discussed because she was just the person who was ruining their day. Like how great to just be the arch villain who just happens to roll by, you know, we need more of that. I should be able to name a hundred of those, you know, instead of just being able to call out one or two.

Brandy (26:33.754)
Mm-hmm.

Brandy (26:40.128)
No, absolutely. Absolutely. And yeah, I'm glad you pointed that out because sometimes I think we feel that our disability defines us, but often it's just because other people are defining us by our disability. It's the other way around. And I have more stories to tell than just I'm a Crohn's patient who survived drug induced lupus, you know? So that's so important. Well, thank you so much. Um, you're really inspiring this.

Maria (26:53.293)
Yes.

Brandy (27:09.464)
So much great information. I love learning about the disability database. So where can everybody find you?

Maria (27:17.442)
For sure. So my website is voicebymaria.com and you can find the Disabled Voice Actors database if that's something you're interested in. It's just disabledvoiceactors.com and then I'm on social media at Maria Pendo, P-E-N-D-O. So feel free to follow me on Instagram or TikTok and I'm also happy to connect with people on LinkedIn.

Brandy (27:38.264)
Thank you so much for being here today. This was a really great interview and hopefully we can speak again sometime soon.

Maria (27:44.874)
Yeah, absolutely. Thank you so much for having me.