Beyond the Capacity Myth

Beyond Beautiful: Disability, Liberation, Love

Season 2, Episode 6 — Beyond the Capacity Myth

🎧 Listen to the Episode

🧭 Episode Summary

In this episode, Mandi joined by Preston Burger to challenge a belief that shapes so much of our culture: the idea that our worth is tied to productivity, independence, and output.

Together, we unpack how the “capacity myth” shows up in education, employment, and relationships — and how it disproportionately impacts disabled and neurodivergent people. Drawing from his work in higher education, accessibility, and nonprofit leadership, Preston offers insight into what meaningful inclusion and relationships looks like.

This conversation invites us to rethink success, embrace interdependence, and remember that dignity is not something we earn through productivity.

⚠️ Content Notes

Throughout the episode, language alternates between the Social and Identity Models of disability. There is also some explicit language used.

🎙 Guest

Preston Burger is a neurodivergent multi-hyphenate who has been a self-advocate his whole life, a skillset that has allowed him to have rewarding experiences promoting disability awareness in industries, notably the arts, higher education, youth and family services, and talent acquisition. From 2016-2021, he was the CUNY LEADS Advisor for Bronx Community College for 5 years, a role that allowed him to coach hundreds of students with disabilities toward their academic and career goals, guide a group of students with disabilities in building the BCC chapter of the CUNY Coalition for Students with Disabilities, and collaborate with a spectacular team of disability service professionals in advancing the campus's digital accessibility practices by ensuring the DSO was the first office to pivot to fully virtual operations at the start of the the COVID-19 pandemic.

Currently, Preston is a Shift Supervisor at Cafe Joyeux, a nonprofit cafe that offers meaningful employment to individuals with disabilities, and the Development Manager for Actionplay, a nonprofit theater company that creates accessible theater-making experiences to autistic/neurodivergent teens and adults. In his spare time, he loves singing in choirs, exploring New York City with his partner, and snuggling with their two cats.

💬 Key Themes

• The Capacity Myth

• Ableism & Productivity Culture

• Redefining Independence

•  Dignity Beyond Output

• Disability Justice in Practice

📜 Full Transcript

Mandi: Welcome to Beyond Disability Liberation Love. I'm Mandy, your queer Christian disabled host. Today's episode is called beyond the Capacity Myth and we're unpacking a belief that runs deep in our culture. The idea that our worth is tied to how much we can produce, achieve or carry. So many of us have been taught, directly or indirectly, that value equals productivity, that independence equals success, that needing support means lacking something. But from a disability justice perspective, we know that's not only untrue, it's harmful. Capacity fluctuates, bodies change, energy shifts, and none of that determines our dignity or our worth. In this episode, I'm joined by Preston Berger and we're challenging the systems and stories that measure people by output. And we're imagining something different. Communities rooted in interdependence, care, and inherent value. Preston is a neurodivergent multi hyphenate who has been a self advocate his whole life, a skill set that has allowed him to have rewarding experiences promoting disability awareness in industries notably the arts, higher education, youth and family services, and talent acquisition. From 2016 to 2021, he was the CUNY Leeds Advisor for Bronx Community College, or bcc, for five years. That was a role that allowed him to coach hundreds of students with disabilities toward their academic and career goals. He also guided a group of students with disabilities in building the BCC chapter of the CUNY Coalition for Students with Disabilities. And he collaborated with a spectacular team of disability service professionals in advancing the campus digital accessibility practices by ensuring the office was the first to pivot to fully virtual operations at the start of the COVID 19 pandemic. Preston currently is a shift supervisor at Cafe Joy U, a nonprofit that offers meaningful employment to individuals with disabilities. He is also the Development manager for Action Play, a non profit theater company that creates accessible theater making experiences to autistic and neurodivergent teens and adults. In his spare time, he loves singing in choirs, exploring New York City with his partner, and snuggling with their two cats. Before we jump into the interview, I want to remind you all that we allow people to use language that is most comfortable for them. So Preston identifies himself in ways that are comfortable for him and ways that he prefers to be referred to. Throughout this episode. The language may or may not align with ways that you identify. Now let's go beyond the Capacity Myth.

Mandi: Hi Preston, welcome to Beyond Beautiful. I'm really excited to have you on the show today.

Preston: Thank you so much for having me, Mandi. It's great to talk to you.

Mandi: For listeners who have not met you. How would you like to introduce yourself?

Preston: My name is Preston Berger. I use he/him pronouns. I am a white man who is 40 years old and I am a person with autism and ADHD. So just in the neurodivergent world. And I guess the best way to describe myself as a multi hyphenate. I catapulted out of special education in my childhood when I discovered music and musical theater. I have been a modern dancer. I have been a educator. I worked specifically in higher education for a number of years in a combination of disability services and career services. I have worked in talent acquisition, focusing on autism hiring initiatives. And now I'm venturing into a new stage of my life where I'm digging a lot more deeply into my passions surrounding the arts and specialty coffee. And I'm doing that as a barista slash shift supervisor at a nonprofit cafe called Cafe Joyu, which hires food service professionals with disabilities. And I am currently a volunteer choreographer and the development manager for a autism focused theater troupe called Action Play, which focuses on social emotional learning through making the theater making process accessible for people with disabilities.

Mandi: Wow. You wear a lot of hats and are doing a lot of great work. So thank you so much for sharing all of that. So you shared that you've supported disabled students and now you work in inclusive employment and theater spaces and you kind of touched on this idea of the importance of relationship building. So why is relationship building such. Such a critical access need for disabled people?

Preston: Because it's the core of humanity. Ubiquitously. It make. It's what makes humans humans to have those relationships. And one very clear example of this for me, when I really started noticing for myself how important connection was, was when I, COVID 19, swept across the nation and everything just locked down. We had that almost night and day. Sunday we were operating like everything was normal, and then Monday, everything closed. And the reason my team in the disability services office made sure we got back online so fast was because we were hearing from our students that they were feeling lonely and they missed school. They missed having that community that they had found in our office. And is there any way we could do something about it? Within a week, we were back online, thanks in large part to our assistive technology manager, who I cannot tell you how much they craved just being able to talk to each other. That was. Even if school maybe was going to be out for a while, they wanted to have a place where they could talk to each other. There was something about COVID that I think just woke up in. I can only speak from my own perspective here, the disability community that we just came out and we're asking, please, how can we keep talking to each other? We just. We craved that need to connect. And the minute that we did get everything connected, I was noticing people were show. If we had a weekly meeting, people were showing up every week.

Mandi: Yeah, that's really powerful. I experienced something similar in the nonprofit that I was working in. We also quickly started to put on online programming for youth with disabilities. We worked with young people ages 5 to 21, and we really experienced the same thing where folks just really wanted to be connected in any way that they could be. So in kind of talking more about this, what in your experience happens when disabled people are excluded from relationship building, especially when it's under the assumption that they don't need or they don't have the capacity for relationships?

Preston: It's hard to say because I've never been in a scenario where I'm dealing with someone who's been shut out from having relationships. A lot of the work I've done has been in spaces that were created specifically so people with disabilities can have relationships and social connections and job experiences or volunteer experiences. If anything, what I've noticed in my work, a lot of people in the group I was connected with were commenting, we wish we were more connected outside of us. We're not hearing about when there's volunteer opportunities. We're not hearing about when there's talk about a topic we might be interested in. So I. I think maybe the question I've struggled with more is what happens when we're left out of the broader social circle that is life outside of that very myopic lane of the disability community. And what I think happens is it, at least in my experience, people get very cynical and they get jaded, and they start to develop this very us versus them mentality. The beautiful thing I've seen, though, is that that ends up leading to them finding other ways to express themselves. Typically, from what I've seen through artistic pursuits, whether that's through painting or poetry, I've met some people who are songwriters. I followed this one influencer for a while who got out their artistic expression through stim dancing, which I've noticed I do sometimes as well. So I think that two things happen. What happens is maybe some part of the person's inner world gets unlocked when they find the means to express it. But I think the tragedy underlying that is that they haven't been given the chance to connect with people outside their very insular world.

Mandi: Yeah, I think that's really powerful, what you're sharing, that there are sometimes opportunities that are created for people with disabilities to connect with each other or within the community itself, but that in and of itself can sometimes be exclusive when it's not allowing opportunities to connect with the broader community or the broader world at large. So I think that's really important. So you shared about neurodivergence. So what strengths do autistic and neurodivergent people bring to relationships that often go unrecognized?

Preston: Well, you're familiar with the. The expression, if you've met one person with autism, you've met one person with autism, right?

Mandi: Yes.

Preston: Okay. So I think that it's less about what do neurodivergent people bring to relationships and more about what. What does the person bring to the relationship within the group that they have found as part of a community? Naturally, a lot of my friends, outside of just the, like, disability circles I found myself in, a lot of them just end up being neurodivergent. Anyway. I guess we have this interesting way of finding each other. But what I think, if I had to boil it down to one particular thing, what the. The big thing I've noticed is that we. We focus on specific details about topics that really are pretty generally liked by society writ large. But we just find these very, very, very specific things and we analyze them. And I guess the feedback I've gotten from that is that as a result, we tend to take conversations along this left turn into, into and. Or through the Looking Glass and reframing what people maybe were thinking about when they thought about a topic. Like, I. I was at a. I was at a presentation party. Have you ever been to a presentation party?

Mandi: I have not been to one, but I've heard of them. And I think it's a little bit of a newer thing. So if you can share with what a presentation party is, that'd be great.

Preston: Okay. So basically, the. The people who are invited, the common activity is you come with this topic that you can talk for about five minutes or so that you're passionate about. And it doesn't really matter what the topic is. All that matters is that you are committed to sharing what you have found about it and what. What you want to share. For me, I studied modern dance in college, and so I really. And I knew that the people who were at this party, a lot of them were artists, a lot of them were musicians or musical theater people, and maybe some of them would know a thing or two about dance. But I've always loved this particular story about a choreographer named Paul Taylor who became very famous for his very athletic style. One of the first concerts he ever produced in 1957 was seven different dances of either very minimal movement or no move movement at all. And the. The response of his mentor was to write a review in the Dance observer that was 4 inches of blank space. And I've always loved that story because, I mean, how else. What better example of saying everything you need to say by saying no words at all? That was the topic I did. And then another person did a whole presentation about this one character in Downton Abbey, breaking down any conception that they were a par. A paragon of virtue and instead more than likely a serial killer.

Mandi: That's interesting. What I'm understanding from what you're saying is that everyone is kind of bringing something unique to the party, so to speak. And it sounds like that's how you're viewing relationships with people who may identify as neurodivergent. It really depends on the community. It depends on what the relationships itself look like. And it's no different than really asking what does someone who's non disabled bring to the table? Right. Like we shouldn't be bringing necessarily anything more or less special. It's just what we're interested in, what we can offer. That's what I'm getting from what you're saying.

Preston: Absolutely. And, and are you bonding around common interests or common activities or any other thing that forms the foundation of a relationship?

Mandi: Yeah. How has self advocacy helped you to push back against narratives that question emotional or relationship capacity?

Preston: I think my career, in and of itself, just sort of was my way of advocating for myself for a very long time, trying to put myself into spaces where I felt I could make a difference, where I could offer a different perspective, particularly when it came to this population. I have a very particular view of self advocacy, where it's less about the things you do and more the frame of mind you're bringing to your life. Are you coming at it with a place of agency? And so I think for me, the way I self advocate has actually adapted a lot, especially over the last year as I go through this very big transition in my life. One way that I've noticed I have learned to advocate better is I talk a lot less than I thought I needed to. I'm finding that listening, like really, really deeply listening to what somebody is saying so I can try to get a sense of their. Their mindset is so critical because I can say whatever it is I want to Technically. But I need to meet the person I'm talking to halfway in the sense of I need to understand what their mindset is so I can adapt my language and my actions so that they'll be able to process what it is I'm now sharing with them. Something I've noticed about the way I process information. I process in very, like, discrete chunks of information. I can only take in so much at a time before I tap out. I think being more friends with more autistic people who are my age has helped me to accept that about myself. And so I'm learning how to just say plainly, look, I need you to stop where you just left off, and I need you to. I'm going to tell you what I heard, and I need you to tell me if that's what you actually said. Learning how to listen to people and learning how to reflect on how it is that I'm best going to process the message being communicated to me so that I can reciprocate.

Mandi: That's awesome. Yeah. Thank you so much. And you've talked a little bit about your role at Cafe Joyeux and at Actionplay. So in your current roles at both of these places, what does it look like when we assume capacity instead of deficit? So, in other words, when we look at people for the positives, for the things that they can offer, instead of looking at the things that, you know, may be lacking or that might be considered a deficit.

Preston: I think the best way I can summarize it is coming with a capacity mindset forces me as a supervisor to really interrogate when I'm feeling off the deep end or when I'm feeling frustrated so that I can reflect and ask myself, what is another way I need to approach this? What is another way I need to attempt this? I know there is another way. I know they want to learn how to do this task or this assignment properly. I know they can. What do I need to change about how I explained it to them or how I teach it to them?

Mandi: I love that so much. That approach aligns so much with the social model of disability and really understanding that it's not about deficit or something lacking from the individual, but really us reimagining or redesigning the systems that are in place to make it work for everyone, including people who may learn differently or process information differently, So I really love that you take that approach, especially as a supervisor. So if we let go of neurotypical standards for emotional expression, what might we finally understand about autistic people?

Preston: It's kind of like asking to resolve the major questions of the universe and why it is infinity. Honestly, if we were to let go of neurotypical standards. I, I had a friend who he, he's a psychologist now. His first job that convinced him he needed to pursue this was have you heard of the, the Eden School?

Mandi: No, I haven't.

Preston: Okay. They're out in New Jersey. They're, they, they're like a, a kind of, like a, a pinnacle of the, of the autism education. He, he was a, like a behavioral aide there. And what he told me was in working specifically with people who are non speaking, it took him a little time to learn how to read them. But he did figure out eventually they know how to communicate very effectively. They just can't use words. They can point to things, they can use facial expressions, they can laugh at things. They can walk you over to a place they like. They have their own ways of telling you what is on their mind. And so I think if we're going to think about the non speaking population, I think we need to let go of this notion that just because they're human means that they are required to use words in order to communicate what it is they're trying to tell. What is this soul trying to communicate? And what can I communicate through my soul back to them? It becomes a lot easier to just dance with communicating and forming a relationship. You find new ways to support each other or to get angry at each other and most importantly, to communicate it clearly in a way that they will understand.

Mandi: I really appreciate that you just said get angry with each other because I think a lot of times when we talk about disability justice or we talk about breaking down barriers, there's this utopian kind of feel where, oh, we're just going to be all so happy and get along. But really to your point, the communication and breaking down the barriers and all of that is so that we can all have the experience, the same experience for, of the good and the bad and, you know, the difficult emotions to deal with, but just living the human experience. So I really appreciate that you specifically brought up that emotion.

Preston: Anger?

Mandi: Yes, yes.

Preston: Oh, it's. It, honestly, it, it's so. It's such a prevalent emotion in the disability communities that I've operated in because a lot of them are adults, they're angry about a lot of things and frankly, they have every reason to be. And I think that it frustrates me that that isn't taken more seriously.

Mandi: Absolutely. I couldn't agree more. And I think we've seen when anger is Channeled in the right way. We've seen progress come from anger and we've seen it really move the needle forward in equality and equity when it's been channeled and used in, in the right way. So I couldn't agree more with you. So for listeners, especially caregivers, educators or employers, what is one mindset shift that you would invite them to make after this conversation?

Preston: When you talk about the capacity myth, it's basically, do they have the capacity to form relationships, to learn new things, to experience a full life? So what? Like, if I can tap into my own anchor, so what if they don't? Does that make them any less of a human being? They're standing in front of you, they're living on this earth. They, they have more than enough capacity to live a life. It's just not the life you would have wanted for them. And I, I have a friend who's a special educator who I think had a fantastic expression for that, like I guess, stuck point, which is the parent is working through the kid's autism, meaning the parent has reached a point where they are bumping up against a part of their child's development that just, that's what it is. That's where it's going to be. That's what you're working with. And the parent can't quite accept that. And I'm not saying this to be mean, I'm saying this actually to be supportive. If you are a parent experiencing a version of that, call a therapist for yourself. That is a, that is a journey that can feel so hopeless and so confusing and so sad. You do not want to be working through that alone. Especially if you want to have any hope of building a healthy relationship with your child where you do become collaborators and you do figure out, well, this isn't working out the way I thought it would. But what do they want? And can they tell me? If so, how can they tell me? I don't know if any parents out listening have heard. I know I kind of keep coming back to the non speaking population, but if, if anybody's heard of Communication for All, led by Elizabeth Bunker. She is a pioneer in really making spelling to communicate a common tool. Another mindset shift that I would encourage is stop thinking about their capacity to form relationships and start thinking more about building your own capacity to accept. To accept things as they are, to accept this person as they are, and to find the beauty and the joy and the sadness in that. If you're bumping up against this, my child might not be happy first of all, people are resilient. They'll find a way to be happy. Second of all, like, don't. Don't shut out the crappy feelings. You're gonna feel shitty sometimes, and that's okay. That's part of the human experience. I've gone through periods where, speaking as a neurodivergent person, I'd gone through periods where I'm getting out of bed and I'm doing things, but, like, I couldn't function, really. I just. I could. I couldn't. I couldn't make decisions. Luckily, I have a very understanding partner. And the way we got through it, honestly, was one step at a time. We communicated sometimes we fought, sometimes we laughed. We. Sometimes we just would say, why don't we go for a walk? And we would just walk side by side and just experience nature. We never gave up, and we never. We never talked about how it should be. If anything, I talked about how it should be, and she would be first to go. Stuff like, stop, stop that. So I think let go. The best thing I could. I can advise is let go of shoulding yourself.

Mandi: I love that. I feel like that should be on a T shirt, because that's really powerful about being present and experiencing the now. And I think that also could really help people with the challenge that a lot of folks have with comparing their own experiences or their own situation to someone else's. And I think that brings us back to when you said, you know, if you've met one autistic person, you've only met one autistic person. It's just to compare your experience to someone else's isn't fair. And you're. You can't live in the should or could. You have to live in the now and figuring out how to navigate the current moment. So I really appreciate that insight.

Preston: I think another thing that is, if you want to make it fun for yourself, I think also I've been meant. I've been talking about the sadness a lot. Look for the ways in which this person is hilarious. I guarantee you there is a sense of humor in there, and more than likely, it's dark and twisted in ways that you never would have seen coming from a person like this.

Mandi: Yeah, I think humor is a really powerful tool and definitely can bring a lot of joy to difficult situations and even allows people in difficult situations to express themselves. I think we see that when we look at the rate of depression, even among comedians and how many comedians are often experiencing high levels of depression, and they express that through humor. Sometimes it's dark humor. Sometimes it's goofy, but it is a really strong coping tool and I would dare to say a type of medicine that can really help.

Preston: So Preston, I really also to mention the fact that there are more and more comedians who are coming out as autistic.

Mandi: Well, thank you so much, Preston, for being so transparent and sharing from your perspectives and your experiences. I really appreciate this conversation and I know that listeners who are autistic and neurodivergent and those who are in community with them will really have learned a lot from the things that you shared today.

Preston: Can I add one more thing before we go?

Mandi: Sure.

Preston: I've been part of the resume writing professional association for about a year or two and I'm I connected with somebody who works a lot with the autism population. She does like resume writing for them. We met the other day and we've been really trying to talk about like really zero in on what is it that makes this makes this population unique when you're working with them from the career coaching perspective. And honestly, it's hard to say because as you and I have kind of touched on in this conversation, it all kind of ends up being coming back to, well, isn't this just how you talk to any human being? What kind of sparked in me the other day was I think what people working with autistic folks who aren't just in it all the time need to understand is that there is a culture to autism. There's a culture among the parents and there's a culture among the people themselves. And part of understanding that culture is understanding the history of autism, who were the first people to identify it, and what were the treatment modalities that were used in the past and that are still used now versus the ones that are being innovated and how have diagnostic criteria change? That is all part of the soup of the autism culture. And I think that it is important to read up a little bit on some of the beautiful parts of it, like the woman, the Soviet woman, Grunya Sukareva, who discovered it before Hans Asperger. And it's important to read up on applied behavioral therapy, because whether we like it or not, it's still there and a lot of people are using it. And it's informed the way a lot of autistic adults conduct themselves when they grow up and a lot of the trauma they have to work through. But then you learn about services that are starting to finally be covered by insurance for people with autism, or you learn about the state services for when they become adults that help them to live a a full life such as self determination or assisted living. It's important to know all of those things, not so that that becomes what you talk about with the person, but so that you can have a little more empathy and and a little more grace for understanding why maybe, just maybe they are saying and doing certain things the way they are doing and saying them.

Mandi: Yeah, I really appreciate that and I think it is important for people to be willing to take on some of the responsibility and the onus for learning about this. And I appreciate you bringing to light the importance of the culture that exists and I think many different disabilities within the community has its own culture and then we have a shared and collective culture as well. And it is important for people to see that and understand that and if they want to be true allies, to learn how to become part of that and help us to share our stories. So thank you so much again for your transparency and for sharing your experiences and your perspectives. I really appreciate it.

Preston: Thank you for taking the time. Andy, I've really loved talking to you.

Mandi: Thank you so much for listening to today's episode. Your time, your presence and your engagement mean more than you know. And a special thank you to everyone who has already clicked the Power the Podcast button. Your support directly sustains this work and helps me continue building something rooted in disability, justice, love and accessibility. This is the final week to contribute $5 and receive an instant download of my Valentine's Day Digital Reaction Sticker Pack. These adorable digital stickers, inspired by classic sweetheart conversation candies, feature phrases like access is sexy, spoon me gently and no is complete. You can use them in chats and DMs, social media posts, digital planners, and more. Every purchase supports the sustainability of this podcast and allows me to enhance accessibility features like transcripts because access matters. To grab yours before they're gone on February 22nd, visit my website at mandiboxbeauty.com click the power the Podcast button and head to the shop. Today and next week, we're going beyond the surface as we explore non apparent disabilities and the ways disability can intersect with grief. It's a tender, layered conversation you won't want to miss. And remember. Disability, liberation, love are always beyond beautiful.

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