Break A Leg! Disability in the Arts

Theatre Workplace Accommodations with Alondra Santos-Castillo

Nicole Zimmerer / Alondra Santos–Castillo Season 1 Episode 5

Alondra Santos-Castillo is a theatrical stage manager, scenic designer, and artist. Nicole and Alondra discuss what it's like to have arthrogryposis in the workplace, some important US legislation, Alondra's recent entrepreneurial venture, Nicole's ideal "man meat," and more!

Find Alondra online! 
Instagram: @mamaduckysessentials 
Facebook: https://www.facebook.com/MamaDuckysEssentials 
Linktree: https://linktr.ee/MamaDuckysEssentials 

Mama Ducky's Essentials on Etsy: 
https://www.etsy.com/shop/mamaduckysessentials/ 

Links to the SSDI Bills in Congress:
House: https://www.congress.gov/bill/117th-congress/house-bill/3824 
Senate: https://www.congress.gov/bill/117th-congress/senate-bill/2065 

Episode Transcript: https://www.buzzsprout.com/1751649/8846889 

Produced by Scott MacDonald 
Artwork by Sasha & Alexander Schwartz 
https://breakalegpod.buzzsprout.com/ 

Nicole Zimmerer:

Welcome to Break A Leg! A podcast that explores the relationship between disability and the arts. I'm your host, Nicole Zimmerer, and on today's episode our guest is Alondra Santos-Castillo. Alondra is a theatrical stage manager, scenic designer and artist. Her disability of arthrogryposis has never stopped her from accomplishing what she sets her mind to. Alondra, we are so excited that you're here. Thank you for agreeing to come on to the podcast.

Alondra Santos-Castillo:

Thank you so much for having me. I'm excited to be here!

Nicole Zimmerer:

Yeah, yeah, it's gonna be a lot of fun. So our first segment, as always, is Spilling the Disabili-Tea, where we take a look at historical or current events, or share some interesting facts relating to the disabled community. And on today's episode there's important tea to be spilt regarding a law that's coming up for a vote in Congress and the Senate. And it has to do with SSDI, which is social security disability income. So for those of you who don't know, SSDI is the benefits that help disabled communities every month with rent and food. And there's a cap on how much money a disabled person can make. And it's $2,000 a month. And if you have more than $2,000 a month, you can lose your healthcare, your Medicaid or your Medicare, which if you qualify for SSDI, there's a high chance that you qualify for Medicaid and Medicare. But if you have more than $2,000 a month, you can lose your Medicaid and Medicare. And those two health care providers help a lot of disabled people pay for very expensive necessities like a homecare worker, or um...

Alondra Santos-Castillo:

So really quick, what's with the--because I'm like really interested in this--so they're trying to fix that law?

Nicole Zimmerer:

Yes, yeah. So they're trying to amend the law, so disabled people can have more than $2,000 in their bank account. Because when they made the cap $2,000, this was like in 19, like, I don't know, 80 something, when $2,000 was more than enough to live and work and all that good stuff. Because SSDI is supposed to help disabled people and the elderly to stay out of poverty. But what it's done now, in our current economic climate, is it's forced poverty.

Alondra Santos-Castillo:

Yeah.

Nicole Zimmerer:

Because it's, and, excuse my French, but it's bullshit.

Alondra Santos-Castillo:

Oh, it's terrible. That's why I actually haven't worked a lot.

Nicole Zimmerer:

If I have, like, I can only have $2,000 in my bank account right now. But if I have, let's say, $2,000.01, the government could be like,"Oh, you have more than enough money to sustain yourself, you don't need these benefits."

Alondra Santos-Castillo:

Yes, it's terrible. It's very frustrating, because you know, a lot of... you know, I would love to work and do so much more theatre and stuff, but at the back of my head, I have to be very mindful of, "if I started making too much money, I'm gonna lose all my health benefits." And you know, a lot of for my case, I need to get braces for my feet, that is covered under my insurance with that. So it's very terrifying to do, you know, I want to...

Nicole Zimmerer:

Right.

Alondra Santos-Castillo:

It kind of limits you as like, you know, moving to being an adult, because--

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

--you want to go out and get a job you want to, you know, save up to get a house and stuff. But having like this, you know, so called "benefit" hinders you so much more--

Nicole Zimmerer:

Right.

Alondra Santos-Castillo:

--than what I think it's really intended for. Because now it's like, "Oh, I just have to be at home and do nothing, because if I make too much money, I'm gonna get penalized for it." Where 2000 is nothing, like that can get you one month of rent, and then you're back to square one.

Nicole Zimmerer:

Right. Right.

Alondra Santos-Castillo:

So it's practically nothing.

Nicole Zimmerer:

I mean, and like it hinders everything for me personally, because like, I'm at that point in my career where I can start getting paid for my work, and I should be getting paid for my work. But every time anybody wants to pay me for my work, I have to double-check and make sure that I can without losing my very important benefits that I need to survive and have a, like, fruitful career and a fruitful life. And I feel like everybody's like,"Oh, these people on benefits, they should really like be, you know, functioning members of society." Like and I'm here to tell you, we want to be that. We want to get a job. We want to help. We want to be in the workforce, because we want to be adults. And we are adults.

Alondra Santos-Castillo:

Yeah!

Nicole Zimmerer:

I have been waiting for this moment--

Alondra Santos-Castillo:

Yeah.

Nicole Zimmerer:

--for a very long time, and the fact that it's finally happening, and I don't know if they're gonna pass it, I hope they do. It's very, um, for someone who doesn't have a lot of hope, it's very hopeful for me. I don't know about you Alondra, how do you feel?

Alondra Santos-Castillo:

Yeah, I mean, I would love for that to be passed through. I feel like it's about time for something like that. I don't know, it's... it's just, it gives me hope that maybe something can change. But I don't know how much it will.

Nicole Zimmerer:

Right.

Alondra Santos-Castillo:

Like, are they gonna still try and keep us locked into their system?

Nicole Zimmerer:

Right, right.

Alondra Santos-Castillo:

And then another thing that I think I'm starting to also worry about is, since I recently got engaged, I know my mom said, we may end up losing it anyway because I think--

Nicole Zimmerer:

Right.

Alondra Santos-Castillo:

--at that point, once you become married, they start looking at your partner's income as well.

Nicole Zimmerer:

They do. They do.

Alondra Santos-Castillo:

So the moment he makes 2000, I've already lost it. And he's working right now. So.

Nicole Zimmerer:

Right. Right. Because fun fact, for all of our listeners, disabled people don't have marriage equality, because I've had friends who have been with their partners like 15, 20 years, and they're like, "we want to get married, but we can't, because if we get married, I lose my benefits, which means I lose my home healthcare worker, I lose this, I lose that, etc, etc." And I don't know about you Alondra, but that does not sound like marriage equality to me. So.

Alondra Santos-Castillo:

Yeah, not at all. That's just telling you, you should stay single, and you're not allowed to have the benefits of living a life.

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

Yeah.

Nicole Zimmerer:

Yeah. I mean, like, not only like do we, do you lose the benefits if you get married, like, but if you don't get married, you don't have any benefits of being married. Like, if your partner gets sick, and is in a hospital, you don't have the privileges that a married partner should have. Because even though you are in that committed relationship, you aren't legally married, therefore you have no legal right as their partner. And I just think it's a very slippery slope. It's basically what the LGBTQ community went through before 2015. And I'm so glad that we got gay marriage legalized, and I'm so glad that they have that. But it's time for the disabled community not to be an afterthought. So.

Alondra Santos-Castillo:

Absolutely.

Nicole Zimmerer:

I'm really excited about this. And if you want to help, our listeners, you can call your senators and representatives and tell them that you support the passing of S.2065 and H.R.3824. So tell your senators, call your representatives, and tell them that you support S.2065 and H.R.3824. And I think that's our most important Disabili-Tea spilt in a very long time. And I'm very excited. So hopefully, if that passes we can have, we can do more work, Alondra. I don't know about you, but I'm--

Alondra Santos-Castillo:

Yes! I want to work!

Nicole Zimmerer:

--itching to get back. Even after like 15 months of complete nothing. Well, um, not wait no! That's not true. I saw a lot of great, you know, pandemic theatre. And when people say that "theatre's been dead" for 15 months, I say,"Mm, that's kind of elitist."

Alondra Santos-Castillo:

They've just been doing the new means of technology.

Nicole Zimmerer:

Right. We've been adapting.

Alondra Santos-Castillo:

Adding new skills.

Nicole Zimmerer:

Yeah. Which--

Alondra Santos-Castillo:

Yep.

Nicole Zimmerer:

--you know, is something that theatre people are very good at. We're very good at adapting. And I think as disabled theater people, we are super good at adapting.

Alondra Santos-Castillo:

Oh yeah!

Nicole Zimmerer:

We're like Mario when hits that, you know, sunshine thing.

Alondra Santos-Castillo:

Hahaha! Oh, yeah!

Nicole Zimmerer:

I don't know. I've only played it like once. But it was like, really... it was an informative moment for me, um, playing that video game. But yeah! So, Alondra, how are you doing?

Alondra Santos-Castillo:

I'm doing great. How about yourself?

Nicole Zimmerer:

I'm great. Um, where are you right now? Where are you calling in from?

Alondra Santos-Castillo:

I'm calling in from Norristown, Pennsylvania.

Nicole Zimmerer:

Love Pennsylvania. Love it. So let's jump right into it. Like we had a very serious discussion about politics. And now let's, you know, do a total pivot into the arts. Alondra, do you mind telling the people listening who you are, what you do? Like, what's your damage? Like, tell us, we want to know. We want to know all the juicy secrets and all the juicy details.

Alondra Santos-Castillo:

Oh, I got plenty of details for you! Just you wait. But um, haha.

Nicole Zimmerer:

Good.

Alondra Santos-Castillo:

So I was born with arthrogryposis. And that means that I was born with club feet, and it also affects the hands. So I have limited motion in my hands. And then especially when it comes to the feet, I'd be forced to walk only on my toes, like my bone structure was in that formation.

Nicole Zimmerer:

Mm-hm.

Alondra Santos-Castillo:

So I've had to deal with a lot of surgeries over the years where they've broken my ankles. And you know, some, most of the surgeries have failed. And I found one doctor that actually succeeded with that. But my whole life, lots of surgeries. They also mentioned, I could do surgeries on my hands. But they were not confident that I would still have my artistic ability with that.

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

So I made the decision that, I have come so far to adapt to how I'm living, that I would rather not go through with a surgery that may push me back even further on where I've come to.

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

So I chose to keep my art over, you know, being someone that's closer, you know, to the quote-unquote "normal." That everyone--

Nicole Zimmerer:

Or the typical.

Alondra Santos-Castillo:

Yeah, or the typical.

Nicole Zimmerer:

Right!

Alondra Santos-Castillo:

So that's a little background.

Nicole Zimmerer:

And was that a hard decision for you?

Alondra Santos-Castillo:

Uh, I don't think it was a hard decision. I know my mom, you know, she would want you know, the best for me. But I cared way more about my art than just being able to have "typical" hands or be able to do other motions.

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

I didn't want that risk factor. I cherish my art too much. It's been with me since I was little up to now.

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

So it's a huge part of my life. So I was like, I can't get rid of that. I don't like that. There's no guarantee. No, thank you.

Nicole Zimmerer:

Yeah, yeah. And that, um, that brings us to our first question. When did you know that you were an artist?

Alondra Santos-Castillo:

I knew I was an artist ever since I was a kid, I'm pretty sure, because my mom told me I used to draw all the time. She said I even learned how to draw with my feet, which is very shocking. I don't remember that. But apparently that was a thing I used to do. But as I grew older, like especially like in middle school, like I would draw throughout class. Like I was on top of my schoolwork, but I would love drawing all the time. When I got to high school, I really honed in on my art skills. And I focused a lot more on like acrylics, charcoal, ceramics, graphic design, photography. I've kind of delved in every bit of art that I could while I was in high school, and that also includes theatre, as well. One of my aides for school, she actually pushed me into, "Why don't you audition? Try, it might be fun, join the choir!" And it was at that moment, I was like, "Okay, I'll try it. I'm not social. I'm not very enthusiastic to be a theatre person." And I did it, and I met some of the best people in my life.

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

And that really pushed me forward.

Nicole Zimmerer:

That tends to happen when you're an introvert in theatre. Like all the extroverts are like, "Hello! We're going to--"

Alondra Santos-Castillo:

Yeah.

Nicole Zimmerer:

"--we're going to cocoon you in our extrovertness. And you're going to feel safe, but you're also gonna feel scared at the same time."

Alondra Santos-Castillo:

It's very terrifying, but--

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

--they're the most, the nicest people like, you know, you go around and... Sometimes this specific, like not saying this is like the stereotypical but, in art class sometimes, you know, there are some of the people that are very, like, "I'm snobby. I'm the best art person ever." But whereas in theatre, I feel like it's very more inclusive. People are very welcoming.

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

Very loving. "Let me give you a hug. You're the best. You're doing great. Kick butt out there."

Nicole Zimmerer:

Yeah. And also, theatre is like a collaborative effort. So it's just easier to collaborate when you like the people you're working with, which, you know, 9 times out of 10. That is the case. But it's great. It's great. So can you tell us a bit of like, how you um... Because you're working mainly as a scenic designer right now, correct?

Alondra Santos-Castillo:

Yeah, right now I'm focusing on scenic design, but I do also, I've delved into stage management that also my second priority that I focus on. But I also have sound designed before. Because I actually, when I went to college I wanted to be a game designer, due to the art, but then I switched my major into music. So I had a strong background on the music element once I got into theatre.

Nicole Zimmerer:

Yeah, can you tell us like that, the moment of like, how you found theatre in college?

Alondra Santos-Castillo:

So when I first went to college, I was so confident. I was like, "I want to be a game designer, I want to do the character designs, I want to do all the background art, everything." But then I took a class in college and it was coding and I struggled by the hair of teeth and everything and it was so bad! And I barely passed. And I'm, I've been a pretty much a straight-A student. So, me struggling to get through a class was devastating for me. And I was like, "Nope, this is not for me." So then I considered what else I really liked to do. And back in high school, I really enjoyed choral music, I got into the select choir. So I really like singing, and I got into the music department. I enjoyed that. Aural Theory was really hard, like being able to listen to a note and notate that was very tricky. I was good with the theory. And I was able to at least have a, an arrangement and teach my choral class. So I was able to do the conductor aspect I wanted. But then across from the hall in my college was the theatre department. And I heard all these students and they were very, you know, loud and fun. I was like, "What's going on over there?" And you know, I was always intrigued. And then one of my requirement classes was a theatre class. And it was Intro to Improv. And one of the requirements was to audition for a show. And I was like, "I don't know what I'm doing. I don't really feel comfortable doing this." But it was part of the grade, so of course, I'm like"Alright, I guess I'll do it." And so I signed up, auditioned, there was a thing on the paper where it was like, "Do you want to be a part of backstage, or help out with any other elements of the show?" And I said, "Sure, why not? What else do I have to lose?" And then I got called in to help do the sound board. And then that really dragged me in to theatre, hard.

Nicole Zimmerer:

Yeah, yeah.

Alondra Santos-Castillo:

And then I left the music department and became a theatre bug. So.

Nicole Zimmerer:

Yeah, it's really interesting to hear your story and the fact that you didn't, like most theatre people, you didn't start with the acting part. You kind of like... You auditioned, but you kind of went through like the backdoor, you know?

Alondra Santos-Castillo:

Yeah. I think with that, when I got to see, you know, the sound board and how things operated. My professor Timothy Gallagher, he really was the best professor I've ever had to this date. And he really showed like how, you know, "This is how a sound board works" and all kinds of valid information that can also still be applied to today. And he taught us how to paint. There was a class where we got to learn every aspect of theatre, and I was in my playground there. I got to learn how to build stuff, paint things, all kinds of new techniques for scenery, sound, he taught us stage management, lights, everything! He made sure we got into every little bit of it.

Nicole Zimmerer:

Right.

Alondra Santos-Castillo:

I was like, "This is where I'm at, not on stage."

Nicole Zimmerer:

Yeah, yeah. Lin Manuel Miranda, one of his, some of his advice for going to theatre school and being a theatre artist is "Learn how to do everything, at least a little bit." And I feel like your professor subscribes to that same ideology.

Alondra Santos-Castillo:

Oh yeah.

Nicole Zimmerer:

Which is a great ideology, because like sometimes, when you're self-producing something, you have to be the director, the actor, the producer, the sound designer, the lighting designer, the scenic designer, the costumer, and the playwright! So it's a really great skill to know. And like, if you know all of these practical skills, you aren't just confined to the theatre world because I'm a really big believer in like, you can take any skill that you learn in theatre and apply it to something else.

Alondra Santos-Castillo:

Absolutely.

Nicole Zimmerer:

Because it really is like a jack-of-all-trades kind of occupation. Like, you know, I was talking to a friend yesterday who was like, you know, he has a degree in opera and he just finished his degree in rhetoric and he has like a writing... I feel like the rhetoric thing is a writing, it is a writing degree. And now he's working for like a, like a technical computer company. And he's doing technical writing, because he has that writing skill, even though it came from like, the artistic side, he can now apply it to the technical side. And I think it's really great.

Alondra Santos-Castillo:

To go off of that too, with what you're saying, you know, using your skills you learn from that, that is so, so relevant to me, because, you know, when I went to, when I transferred to Westchester University, I was scared to learn how to do costume construction. But man, I picked it up so quickly. And for me, since my arms are shorter than usual, clothes never fit me that are long-sleeve like I always have to get them altered.

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

And now that I've learned that skill set of how to, how costumes are built, how to construct that, how to hem things, I can just alter my own clothes and not have to waste so much money getting things changed.

Nicole Zimmerer:

Yeah!

Alondra Santos-Castillo:

I can do that myself now, because I learned that skill. It's so relevant to learn everything.

Nicole Zimmerer:

Yeah. And it's like, you're self-sufficient now and it makes you feel good because you're like, "Oh, I can do this. I can, you know, provide a service for myself that I need," and I don't have to spend $15 a sleeve on, you know, somebody else doing it, um... which--

Alondra Santos-Castillo:

Right.

Nicole Zimmerer:

--I think is a way too high rate. I don't know. Anyway...

Alondra Santos-Castillo:

*Laughs*

Nicole Zimmerer:

Anyway. What's been like your favorite production to work on?

Alondra Santos-Castillo:

So when I think about this, I struggle so hard to pinpoint one production.

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

So I have two that are so tied together. They would definitely have to be Seussical The Musical and The Mystery of Edwin Drood.

Nicole Zimmerer:

Ooooh!

Alondra Santos-Castillo:

Very specific reasons why these are my favorites. Seussical was the very first musical that I ever stage managed. I knew how to stage manage a play. But I'd never done a musical, I've wanted to and I was given the opportunity to. But it was terrifying. I was handed a prompt book on the day of tech. And they said, "Here. Call the show." So I kind of just had to just roll with it and call it as best as I could. And I was like nailing it, I was fixing problems on the spot with the lighting designer. She was telling me that I was the best stage manager that she's had come into that space.

Nicole Zimmerer:

That's nice.

Alondra Santos-Castillo:

And it was also such an adrenaline rush because there was so many light cues. And I don't think I had a moment to breathe--

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

--for the show. It was so great and I love, love that. And the reason why The Mystery of Edwin Drood is another one is it's the first script I've dealt with, that really is audience-driven and especially the endings of the show will be different every night. So the audience can choose who is the murderer of the of the show

Nicole Zimmerer:

Spoiler alert!

Alondra Santos-Castillo:

--and you know, the cast will go around... sorry, spoiler! I'm sorry. They'll go around and you know, get votes from the audience. And every night it was something new. Like there was one rare night where there was two, two gay lovers for once. Usually it's a male and a female, but they chose two of the same and they even chose a brother and sister one night

Nicole Zimmerer:

Eeeew...

Alondra Santos-Castillo:

--it was so wild.

Nicole Zimmerer:

I've actually never seen Suessical or Edwin Drood, and I don't know if that takes away my "theatre card," but I'm definitely interested in Edwin Drood. I love it when shows have different endings. I kind of did that with my thesis. Well, the idea in the beginning was, so I had three nights, we were doing the show for three nights. I was like, "Okay, so every night is gonna have a different ending. It's gonna be like Clue" because my thesis was basically Clue, but in like a play. Um, but, I love different endings. And I love that audiences... I love shows that have audience participation. I don't like to be a part of that audience participation.

Alondra Santos-Castillo:

*Laughs*

Nicole Zimmerer:

Like, if I get called up on stage, I will have a panic attack and I'll be like,"Please. No!" But like, if I get to vote on the ending, I feel like I have some semblance of control. And I'm like, "Ooh, this is fun!"

Alondra Santos-Castillo:

Yeah.

Nicole Zimmerer:

Like and also it's always fun to see like what the actors do with the information that the audience gives them. And I think that's really fun.

Alondra Santos-Castillo:

Yeah.

Nicole Zimmerer:

So. Alondra, how does the intersection of being a Black, Latina disabled woman affect your work?

Alondra Santos-Castillo:

I personally always worry with this, that I'll end up being hired, just because some of Black Latina, instead of my talent. Like I know theaters are trying to become a lot more inclusive and make sure that there's a lot more Black representation on their staff and in their theater. But, I don't want to be hired just because of my skin color--

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

--instead of the talent that I'm presenting. And it's like, we know the skill sets that we have. And I don't want to just be hired for something because I'm a certain shade, and they want to make sure they have that in their department. Like I want to say, "Hey, I have the talent. I'm really good. And you, you know, you need to hire me," because I qualify for this, not because you want to make sure your theater looks good. Not saying that's what all theaters are doing, but to like some of us like, that's how it kind of comes across as?

Nicole Zimmerer:

Yeah, yeah.

Alondra Santos-Castillo:

Like"only looking for this type of people." Like--

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

--I don't want that. Just say you're looking for this position and let people apply. And if that satisfies, then great.

Nicole Zimmerer:

Yeah, like ticking a box, like a diversity box, of like, "Look at this!" Like you don't, you don't want to be a token. You don't want to be a token.

Alondra Santos-Castillo:

Yeah, I don't want to be a token. And it's like, if someone else qualifies better, you should hire them. Like, I know a lot of people want that representation. But it's like, I think it's better to have someone that's really good at the job, then someone that looks like they could be great for the job. I feel like there's a very, difference with that.

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

And that's just how I view that. I very much value my skill set in the fields that I'm proficient in.

Nicole Zimmerer:

So Alondra, now that theatre is, quote-unquote"coming back," can we talk about like accommodations in the workplace?

Alondra Santos-Castillo:

Yes.

Nicole Zimmerer:

What are the accommodations that you need to be successful in your job, and how does your workplace accommodate you, for lack of a better term.

Alondra Santos-Castillo:

So when it comes to me, the accommodations I usually need is anything involving things that are too high for me to reach. For example, with scenically if, you know, the set design is put together I wouldn't be able to reach you know, get up on a ladder and reach for that. So, accommodations I usually talk through with my technical directors, is let me know when certain scenic elements are done, and if they can be placed on the ground, so I can quickly paint them and then you can assemble. So I have to really plan in advance for these kind of accommodations and be on top of my game in order to make sure that stuff gets done. So that's one of the biggest accommodations that I need there. When it comes to stage management, what's nice is I usually have an assistant stage manager, so they'll be able to help me out wherever I need to. But that doesn't, that one I don't need as much accommodations, it's mainly scenic, scenic-wise, that I need. And that's the main accommodation that I need for that.

Nicole Zimmerer:

Yeah. Can I ask, and I don't know if this is a rude question but like, how do you paint the set designs? Do you get out of your chair? Are you, you know, what happens?

Alondra Santos-Castillo:

So for me, I'm not bound to a wheelchair, so I'm able--

Nicole Zimmerer:

Oooh.

Alondra Santos-Castillo:

--to walk around and such. Yeah, usually with arthrogryposis, some cases are actually a lot worse. I have a mild case of it. So I can still walk. I can't do long distances. So if it's a long distance, I'll take my wheelchair.

Nicole Zimmerer:

Right.

Alondra Santos-Castillo:

But if it's just short distances, or I'm painting or working, I usually don't bring it.

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

So when it comes to painting, fun fact if you're ever doing scenic painting, get one of those seat cushions that are for long sitting. And that may help alleviate some of sitting on the ground for long periods of time.

Nicole Zimmerer:

Right.

Alondra Santos-Castillo:

I found that that really helps. And what I'll actually do is most of the time, they're four by six flats that I'm painting. I'll sit around the edge of the frame where I know there's structure to hold my weight. And I'll sit there and then I'll reach to the center as much as I can, paint, do all the edges and stuff and do it that way.

Nicole Zimmerer:

Right.

Alondra Santos-Castillo:

So that's the best way. Another way that a professor showed me if you have trouble reaching when it comes to painting, you can take gaff tape with a paintbrush and attach it to one of the roller sticks. So that way you can further reach with that. I don't enjoy that as much, because it requires a lot of control, and I feel like with my back that'll start hurting. So I usually am just sitting on the floor a lot of the time.

Nicole Zimmerer:

Yes. And then when, so when you have to paint the center, do you wait for the edges to dry?

Alondra Santos-Castillo:

Yeah.

Nicole Zimmerer:

Okay.

Alondra Santos-Castillo:

Yeah, it depends on how detailed things are. If there's more detail in the center, I'll try and work center and work my way out. So that way, it's easier as I reached the end, as I get more fatigued. It just depends on the work. But sometimes I'll start with the edges and work to the center. But yeah, I'll usually wait for it to dry and continue.

Nicole Zimmerer:

Can I just say that's brilliant. #lifehacks.

Alondra Santos-Castillo:

*Laughs*

Nicole Zimmerer:

Like, oh my gosh.

Alondra Santos-Castillo:

Trying to pass along some of the hacks.

Nicole Zimmerer:

Wow. Yeah. So, in terms of accommodations and finding out what you need and getting into space, and you're like, "Oh, I need this, this, and this," is it hard for you to ask for accommodations? Has it become easier, the more you've been in the field?

Alondra Santos-Castillo:

So it's definitely hard to ask for accommodations. Because you... I feel like in my stance, I don't like to be a bother to anyone.

Nicole Zimmerer:

Right.

Alondra Santos-Castillo:

So I don't want to, you know, mess up their workflow by things that I need. So I'm always like self-conscious about that. And I have, definitely, a hard time confronting people about things, so it's very hard to ask. But I kind of just have to shrug it off and just say it.

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

But it definitely does become easier, the more you keep doing it. I feel like as long as I'm able to build that connection with people that like for, you know, in my case, the technical director, the main people that are going to be building things, as long as I make that connection early on with them, the asking portion of what I need becomes a lot easier.

Nicole Zimmerer:

Right.

Alondra Santos-Castillo:

But even then that's hard to make that connection because I'm an introvert, and I like to keep to myself.

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

So it's, it's a, it's a big internal battle that I have to go through a lot.

Nicole Zimmerer:

I mean, it's a big internal battle that I feel like a lot of disabled people, like not discrediting what you're feeling, but I do feel like that's a, that's a universal experience with the disabled community. Because, you know, some of us are introverts or ambiverts, or like, even some of us are extroverts. But it's still really hard to like, gather up the courage and advocate for yourself. I mean, not to bring up Crip Camp again. I'm gonna bring up Crip Camp a lot on this podcast.

Alondra Santos-Castillo:

*Laughs*

Nicole Zimmerer:

Just FYI. It's fabulous. Alondra, have you seen Crip Camp?

Alondra Santos-Castillo:

I have not.

Nicole Zimmerer:

It's so good. It's on Netflix. Watch it, and then we can text about it. That's your homework for this week.

Alondra Santos-Castillo:

Hahaha! All right, will do.

Nicole Zimmerer:

I am... I am, I'm constantly telling people about this movie. I think they need to give me like a salary or something. I feel like I'm the one woman like advertisement for this movie. Anyway, there's this part that's really early on in the documentary where Jimmy Lebrecht, who is actually a theatre person himself, he does sound design, he talks about the way like growing up, his father said, "Jimmy, you're gonna have to be extroverted, and you're gonna have to introduce yourself and you're gonna have to be friendly. Otherwise, people will not know how to interact with you. So you are gonna have to take the first step." And I feel like that's a lot of, a lot of disabled people... maybe not all of us, but a lot of us are like, "I don't want to, because I, I do not feel comfortable." But we kind of have to push ourselves out of the comfort zone to, to advocate for ourselves and to make friends. So.

Alondra Santos-Castillo:

Absolutely.

Nicole Zimmerer:

I make friends solely on the fact that I am a handicap placard and I get great parking. So.

Alondra Santos-Castillo:

Yes! That's the best benefit. Haha!

Nicole Zimmerer:

It really is. I'm like, that's the whole reason I have a social life is because people want great parking, and I'm like, "I already have that. But it comes with me!" I totally understand that, it's really hard to advocate for yourself, but like we have to, or we're just not gonna get anywhere.

Alondra Santos-Castillo:

Yeah. We're not gonna get far if we don't--

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

--give ourselves the way that we know we can succeed.

Nicole Zimmerer:

Yeah, yeah.

Alondra Santos-Castillo:

Because we all can succeed. We just have to make sure we can push for that.

Nicole Zimmerer:

Yeah. And sometimes it's really hard to push for that. Sometimes it's like, "Why do I have to push? Why don't people just know not to be, you know, like, dummies? And just--

Alondra Santos-Castillo:

*Laughs*

Nicole Zimmerer:

"--be like,'Oh, this person is obviously not going to subscribe to the typical way of doing things. So we have to figure out a way that they can be comfortable with that.'" Like, sometimes I don't want to advocate for myself, sometimes I just want people to be mind-readers. And then I'm like, "Then, no, that's not fair to them!" And like, it's also that point of like, I don't always want to be an educator about what I need.

Alondra Santos-Castillo:

Right. Based off of, you know, what you're saying with being a mind-reader. I think, you know, when people do try to mind-read, you know, what we need or what they think we need, it's not always the best thing.

Nicole Zimmerer:

Mm-hm.

Alondra Santos-Castillo:

And it ends up making it a lot more difficult.

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

At least in my case, when they try and help, or they think they're being helpful, they're making it worse.

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

So like, sometimes, you know, my mom will get something, and maybe she'll put it up high and like in thinking, "Oh, this will be easy for you to get or whatever, maybe this little gadget might help you." And it's like, "No, I was perfectly fine with the way it was, I could have handled that. This is adding 10 more steps to what I need to do, which takes one step."

Nicole Zimmerer:

Right.

Alondra Santos-Castillo:

Um, and then you know, that's another case where it's like, you know, I'd rather just tell someone,"Hey, I need these accommodations. This is all I need. You don't have to accommodate me for anything else." Because then I feel like that also alleviates the problem of them trying to proactively accommodate you--

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

--and it just end up making our lives a lot worse.

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

And then, it's the back and forth.

Nicole Zimmerer:

Yeah. And it's always harder, it's always harder when they like, they do it from a place of good intentions.

Alondra Santos-Castillo:

Yeah.

Nicole Zimmerer:

And I think that's really hard, with the disabled community. Like, no, I am, I'm perfectly okay with advocating for myself and saying, like, "This is what I need. This is how you can do it. This is it. Like, that's all." But sometimes I'm like, sometimes I don't want to say... but like, I'm perfectly okay with doing it. I just like to, I just like to um, "bitch," as my mother would put it.

Alondra Santos-Castillo:

*Laughs*

Nicole Zimmerer:

But when it comes from, like a place of good, like, good intentions, it's always like "I know you meant well, but like, this is actually like, hindering and not helping" and then like the face of complete, you know... I don't know, I... like somebody tried to help me a couple years ago, and I was like, "Actually, this wasn't very helpful." And they just like, looked heartbroken, like I just kicked a puppy and I'm like, "Dude, it's fine. We all make mistakes." Like, I'm... I think I was the first disabled person he had met, because he was from like, a small town in Texas. And I was like, "Okay, I guess I'm the prototype. Good for me."

Alondra Santos-Castillo:

*Laughs*

Nicole Zimmerer:

But um, yeah. Sometimes it's good. Sometimes it's bad, most of the time it's not great.

Alondra Santos-Castillo:

Yeah, I definitely can agree.

Nicole Zimmerer:

Yeah. So in terms of people accommodating you, what are some things that you wish people knew, when they first start working with you?

Alondra Santos-Castillo:

Um, some things I wish people would know... when they first start working with me is that I'm very determined with my work. I will spend hours trying to do something and perfect it, because I want it to be the best that I know it can be. So I don't try and short-change myself on anything. But I try and give my absolute best work possible, like everything I take on, or that I sign a contract to, I'm going to give you my full 1,000% along the whole way.

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

And then another thing also is, you know, if you treat me with respect, I'm giving you that same respect back. And even if they give me you know, negative or they're being nasty, I'm not going to give you the same attitude back. I'm going to still respect you. So that would be the biggest things, and I'm definitely a perfectionist 1,000%. I will spend hours fixing the tiniest details that probably no one will ever look at.

Nicole Zimmerer:

Right.

Alondra Santos-Castillo:

But I'll know it's there. And it's right.

Nicole Zimmerer:

Yeah, that's good. That's like, that's like good for your... your soul. It's like, "I know it's right. It's right. It's good. And like nobody else needs appreciate it, but I know in my heart of hearts that it's everything that I put in." And like, the fact that like you have a disability, yes, and it does define a part of you, yes. And, maybe I'm putting words in your mouth and stop me if I am...

Alondra Santos-Castillo:

No, you're great.

Nicole Zimmerer:

It's like not your entire life. Like it's a major part of your life, but it's not your entire life.

Alondra Santos-Castillo:

Mm-hm.

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

Absolutely.

Nicole Zimmerer:

Yeah. And what do you think you wish people knew about disabilities?

Alondra Santos-Castillo:

I would say the biggest thing is, you know, things may look or sound bad. You know, when they look at us, or you know, they hear about the stuff that we deal with. But we've dealt with these, you know, disabilities for so long in our lives, or you know maybe some of the new disabilities are new for some people dealing with it. But certain things may be difficult, but we are way more stronger than people think of us.

Nicole Zimmerer:

Yes. Yeah.

Alondra Santos-Castillo:

Because we have to deal with so much. And I think we have that strength, that not a lot of people have in them.

Nicole Zimmerer:

I like to say that I survive on stubbornness and spite.

Alondra Santos-Castillo:

Yeah.

Nicole Zimmerer:

And pure 100%"Fuck you." So...

Alondra Santos-Castillo:

*Laughs*

Nicole Zimmerer:

I'm a little edgy with it. I'm a little edgy, because I'm like... it sucks to be like, it doesn't suck to be disabled, it sucks to be disabled in the world that we live in, in this society that we live in, because it's... well, I don't think about it constantly, but when it comes up, it like really comes up. Like, I start--

Alondra Santos-Castillo:

Right.

Nicole Zimmerer:

--thinking about like, "Why are we, why are we living in a world with stairs? If not everyone can use stairs?" Like

Alondra Santos-Castillo:

Yeah.

Nicole Zimmerer:

--I know some stairs are gorgeous... but we have elevators now! I feel like every, every building, no matter how old it is, needs a fucking elevator. Um.

Alondra Santos-Castillo:

Absolutely.

Nicole Zimmerer:

I don't know. Maybe that's me being a bit too broad, but like, I don't know. I've always wanted to go to Europe, but also at the same time I'm like, I do not want to go to Europe, their buildings are like 1000 years old! And they haven't been updated since the 1500s. There's no way!

Alondra Santos-Castillo:

Right.

Nicole Zimmerer:

In the 1500s, if you were disabled, you would die! Like immediately.

Alondra Santos-Castillo:

Right.

Nicole Zimmerer:

And now that's not the case anymore. Because disabilities aren't like, being disabled is not a death sentence. So yeah, I don't know. That was my rant about Europe. Suck it, Europe...

Alondra Santos-Castillo:

*Laughs*

Nicole Zimmerer:

Alondra, in terms of accommodations, what is like your dream... your dream accommodations? Like, do you want to always have like a, do you want a portable elevator with you? Do you want like a muscle-y man to carry you from place to place? Do you want a service dog?

Alondra Santos-Castillo:

*Laughs*

Nicole Zimmerer:

Like, what is your dream... what is your dream? Um, personally, I would go with a muscle-y man. If it was me...

Alondra Santos-Castillo:

*Laughs*

Nicole Zimmerer:

I'm waiting, I'm waiting for a 250-pound man, named Klaus. He's Scandinavian. He's very good looking. He just lifts me up, and like, carries me to places, and I never have to worry about a goddamn thing again.

Alondra Santos-Castillo:

*Laughs*

Nicole Zimmerer:

That is my goal. What is your goal, Alondra?

Alondra Santos-Castillo:

Oh my gosh, I love that. That's a great goal! We're gonna make

Nicole Zimmerer:

Thank you!

Alondra Santos-Castillo:

--sure you get there, we got you.

Nicole Zimmerer:

Thank you!

Alondra Santos-Castillo:

But, haha... But um, actually, my dream goal would really be to have a service dog.

Nicole Zimmerer:

Mm-hm.

Alondra Santos-Castillo:

Because I was actually looking at the different types of service dogs, like, you know, they... they certify for so many different things, but the one that I would really use is one for mobility. So usually with my disability, I usually have someone with me, usually you know, when they drop me off at the theater or wherever. Just in case like you know, I'm walking and I trip and fall like... if I'm down on the ground, that's it. Like I don't have the--

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

--muscles to get myself back up.

Nicole Zimmerer:

Game over.

Alondra Santos-Castillo:

So yeah, it's game over! Lives have been lost, we are at zero health, no more.

Nicole Zimmerer:

Hah, no more HP?

Alondra Santos-Castillo:

No more HP! Hahaha!

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

Um, and also, another thing with the service dogs that would really help me out is specifically with picking things up. Like they're trained to do... pick things up, bring them to you. And especially with mobility issues, and sometimes having a hard time grabbing things and picking them up, that would really help me out a lot in day-to-day activities and even in the theater space. And especially, another thought that came to mind, with them helping me get up off the ground, that would be huge with scenic painting. Because a lot of the time I'm on the ground and I usually have to have a chair near me at all times. If not, I have to scooch to it, get up and that would really be a great accommodation that would be following me around everwhere.

Nicole Zimmerer:

Right.

Alondra Santos-Castillo:

But having a service dog would really help... help me in that independence, being able to go out and not have to worry about any, like safety problems. They, you know, they spend so many years training for this, that, that's you know, that's why we get them. That's why they cost so much money.

Nicole Zimmerer:

They do cost a lot of money.

Alondra Santos-Castillo:

Like they are a lot of money to get.

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

I forget how much. I think last time I looked, I think it was 20,000 or so?

Nicole Zimmerer:

Yeah... that sounds about right.

Alondra Santos-Castillo:

I don't really remember... But it was really up there. And that's actually why I started my own small business, is to start raising funds to try and get a service dog, because I really would love that, that would put me at ease. And I also feel like it would put my family at ease, knowing that I have someone, you know, to protect me.

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

So with my Etsy store, I really do illustrations, I do a lot of art, I incorporate all my art that I've learned over the years and put that into this business. We've also tried delving into soap, soap has been a good one. But it's still it's kind of hard to really, you know, get a business off the ground.

Nicole Zimmerer:

Right.

Alondra Santos-Castillo:

It takes a lot of work. We're still trying to figure it out, maybe make some name changes or split it, make art its own thing and then make soap something else.

Nicole Zimmerer:

Yeah.

Alondra Santos-Castillo:

Um, so it's a lot of still figuring out.

Nicole Zimmerer:

Still figuring out. Still like feeling out the, you know, the marketplace and like, yeah. What is--

Alondra Santos-Castillo:

Yeah.

Nicole Zimmerer:

What's the name of your Etsy store?

Alondra Santos-Castillo:

So my Etsy store currently right now is called Mama Ducky's Essentials. And we've been talking and thinking to change the name or such.

Nicole Zimmerer:

Mm-hm.

Alondra Santos-Castillo:

So it's a work in progress right now. But I think once we make the change, it may benefit it. Because right now it's kind of I'm doing everything... I do so many different arts and crafts, and my business kind of holds the little basket of everything that I do.

Nicole Zimmerer:

Yeah, yeah. Well, honestly, it sounds like a great idea. And if you have a goal for your, your service animal, it's... it's a lot easier when you have a goal.

Alondra Santos-Castillo:

Yeah.

Nicole Zimmerer:

Versus like, when you don't really know what the end point is.

Alondra Santos-Castillo:

Absolutely.

Nicole Zimmerer:

Which, you know, I feel like that's a great... people are like "It's not about the destination. It's about the journey." And I'm like, "But the journey is so much easier when you have a destination in mind."

Alondra Santos-Castillo:

Yeah.

Nicole Zimmerer:

Like the journey is like the most important part, obviously, because you go and you change, and you figure shit out.

Alondra Santos-Castillo:

Yeah.

Nicole Zimmerer:

I think, you know, whoever put us on this earth is like, "This is an experiment to see if humans can figure things out. And if they can't..."

Alondra Santos-Castillo:

*Laughs*

Nicole Zimmerer:

"...well, it's gonna be fun to watch." Um...

Alondra Santos-Castillo:

*Laughs*

Nicole Zimmerer:

But yeah, yeah, on that note... Alondra, we're gonna have a link to your Etsy shop in the description, but is there anywhere else that the people can find you?

Alondra Santos-Castillo:

Absolutely. You guys can also reach out to me on Instagram at my handle@mamaduckysessentials. And then also, if you're also a disabled theatre artist, by all means, reach out to me on Facebook, like I'd love to chat, get to know you more, and then I can also give any advice that I have or that I've experienced working in theatre.

Nicole Zimmerer:

That's great. That's fantastic. Alondra, thank you so much for being on the show. This has been fantastic. Thank you so much for talking to us about accommodations, and Mario, and Klaus... Which I'm so glad that I got that information out.

Alondra Santos-Castillo:

*Laughs*

Nicole Zimmerer:

If anybody wants to audition for my man-meat Klaus, uh, hit... hit up, um... hit up me on Instagram. Hit me up on Instagram.

Alondra Santos-Castillo:

*Laughs*

Nicole Zimmerer:

That's what I meant to say! Goddammit! How do I say goodbye, Scott?!

Alondra Santos-Castillo:

*Laughs*

Nicole Zimmerer:

So sorry. This is my fault.

Alondra Santos-Castillo:

I think you, you had it.

Nicole Zimmerer:

Okay.

Scott MacDonald:

It was going good, and then you were like,"Oh, Klaus, mi amor..."

Nicole Zimmerer:

*Laughs*

Alondra Santos-Castillo:

*Laughs*

Scott MacDonald:

...got a little off-track with that one.

Nicole Zimmerer:

Alondra, thank you so much for being on the episode today. I really loved it. I think it was a lot of great conversations. And um yeah, this was fantastic. Thank you so much.

Alondra Santos-Castillo:

Thank you so much for having me. I really appreciated being on here. And I hope that what I've shared with you can be used and valued by someone else.

Nicole Zimmerer:

Yeah. That's all we can hope for.

Alondra Santos-Castillo:

*Laughs*

Nicole Zimmerer:

Thank you for listening to this episode of Break a Leg! And thank you to our guest, Alondra, for joining us today. Follow us on Instagram and Twitter @breakalegpod, that's break a leg, P-O-D. Let us know what you thought of the episode or tell us who you think we should have on next. For a full transcript of each episode, use the link in the episode description. The easiest way to support this show is by leaving us a review on Apple Podcasts. And make sure to click that Subscribe button! Break A Leg! is produced by Scott MacDonald, and our cover art was created by Sasha and Alexander Schwartz. I'm Nicole Zimmerer and I will see you next time.

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