Disability Deep Dive Podcast

Episode Transcript

Keith Casebonne (00:14):

How much of who we become is shaped by what other people expect from us and what does it take to finally step outside that pressure and build a life that feels true to who you are? Today, we're talking with Spencer West about breaking free authenticity, anxiety, self-doubt, and choosing a life that feels like your own. Welcome to Disability Deep Dive. I'm Keith.

Jodi Beckstine (00:39):

I'm Jodi.

Keith Casebonne (00:40):

Today we're joined by Spencer West, a speaker, advocate, author, and content creator whose new book Breaking Free: Stop Following Expectations and Start Following Yourself. Looks at anxiety, self-doubt, outside pressure, and what it takes to build a life that actually feels like your own.

Jodi Beckstine (00:55):

It's a really timely conversation about identity, approval, and the hard work of choosing your own path when the world is very eager to choose one for you.

Keith Casebonne (01:04):

This is going to be a great conversation and we are glad you are with us. Let's dive in.

Jodi Beckstine (01:08):

All right. Before we jump in, I'm Jodi. I'm a white woman with dark blonde hair that I'm wearing in a braid. I have blue eyes and wear glasses, and I'm wearing a black shirt with white bows.

Keith Casebonne (01:22):

And I'm Keith, a white man with brown hair, a graying beard, brown eyes, and wearing a black shirt.

Jodi Beckstine (01:27):

Spencer, if you're comfortable, we'd love to invite you to visually describe yourself for our listeners as well.

Spencer West (01:33):

Absolutely. I am a white cisgender male. My pronouns are he/him. I have a bald head, a salt and pepper beard. I have brown eyes. I'm wearing black glasses, and I'm wearing a black T-shirt that's got some photos of Burton Ernie from Sesame Street on it.

Keith Casebonne (01:48):

Well, to start us off, go ahead and introduce yourself to our listeners. Tell us a little bit about who you are, the work you do, and maybe even what led you into the work that you do.

Spencer West (02:00):

Sure. So, my name is Spencer West. I am an author, a motivational speaker, and a content creator. I acquired my disability at birth. I was born with legs, but I was born with a genetic disease that caused the muscles in my legs not to work. So, ultimately, they were amputated just below my pelvis at the age of five so I could get around better. And the work that I do is incorporating my identities of being and disabled and what that experience is like. Specifically, this is for content creation. Both some of the lovely opportunities that I get because of those identities and also some of the barriers that come along with those identities.

(02:36):

As a motivational speaker, I talk to corporate audiences. I also talk about the importance of hiring folks and folks with disabilities, some of the myths behind that. And then I've got a new book coming called Breaking Free, which is about letting go of expectations to live an authentic life.

Jodi Beckstine (02:52):

Yeah. That's a great starting point for us to talk about your book. What made this the right time to write this book? And what are you most hoping that readers will recognize in themselves maybe as they read it?

Spencer West (03:05):

Yeah. Thank you so much for asking. I'm 45 years old. I've had quite a bit of life experience. And the thing that I'm hoping people take away from the book in particular is I think at some point in our lives, we all experience this feeling of being stuck, stuck in a job that we don't like, stuck in a relationship, stuck in a city, or looking at our life and going, "How did I get here? And then how do I get out of this?" And so, this book is for those folks. That's been my experience.

(03:34):

And this is a collection of stories and things that I did to get unstuck and to let go of those expectations that we put on ourselves, that society puts on us, that prevents us from living the life that we want to live and chasing the dreams that we want to chase. I don't know about the two of you. I would love to maybe hear your experience as well, but in my 20s, I followed the North American dream of a job and going to college and I'll have this degree and it'll make me lots of money. And everyone said, "This is what you do and this is how it will work." And then I got out there and it didn't work. And no one prepared me for what happens when it doesn't work out. Then what do you do?

(04:11):

So, this book is what I did to do so. And then at the end of each chapter, we included some prompts and questions for people to ask themselves. So, it's not just my story. I want to genuinely help folks figure out how they can get in stuck with the things that they're feeling in their life.

Keith Casebonne (04:28):

Yeah. I think that's really great. And one thing I wanted to call out from the book that I think is really just a little touch, but it really makes a difference. You always capitalize the T in trap. It's a thing, like it's an entity. The trap is an actual villain, if you will, of the story. And I don't know, that little extra thing kind of adds a lot of weight to it. I thought that was a really cool just choice to make in the writing of the book. Thank

Spencer West (04:56):

You.

Keith Casebonne (04:57):

Yeah. And so, no, I understand what you're saying. I kind of went through some of the same things myself. I felt like I was in a relationship trap for a number of years. And also, I went to college, I got a master's degree, and what I'm doing right now pretty much has nothing at all to do with that degree. The path went a completely different place, even though I thought this is what I have to do. And I tried and I went and then finally realized, no, it's not the right path for me. So, totally can relate to some of the things you talked about in the book and remembered some things and decisions that I made.

(05:36):

And what really stands out too is the idea of how expectation gets mistaken for direction. People praise us for what they want us to be versus what's maybe really actually true for us. And I think writing about this from the deeply personal place that you wrote it from helps open up that bigger conversation. So, love that you put all that out there and I think that sharing helps others to feel it in their own lives.

Spencer West (06:14):

Thank you.

Keith Casebonne (06:15):

Yeah. One of the big ideas in the book is the pursuit of external approval. When did you begin to notice how much pressure can come from trying to be who other people expect you to be rather than who you actually are?

Spencer West (06:29):

Yeah. This really started to manifest in my own life in my early 20s when I was in college. From the time that I was born, my parents were like, "We want you to go to college." Because they didn't go to college and they knew that that, I mean, limited some of the opportunities that they could have when it comes to a career. And so, I was like, "Great, okay, I'll go to college." But I didn't have a direction. I didn't know what I wanted to study. I mean, I did want to study theater, but I knew that wasn't going to make me any money at the end of the day.

(06:57):

So, I got to college and I was like, "Oh, I'll study computer science," because I loved messing around with computers when I was in junior high and high school. But truthfully, I didn't really look that much into the major. And I thought it was more about setting up networks and setting up the equipment. And this was more about coding and those sorts of things, which I had no business doing, had no experience doing. And then I was like, "Oh, I have no idea what I want to study." I just picked something and no one really ever asked me, "What do you want to do?" And so, I really had to figure that out.

(07:33):

And I eventually landed on communication because I could do a mix of theater and broadcast journalism and marketing and advertising. And it was a whole sort of buffet of things and skills that I could draw on. So, that was the first piece. The second piece is, we grew up in a very heteronormative society and specifically grew up in the state of Wyoming where it was very conservative, still is very conservative and culture at the time wasn't really mainstream to begin with and didn't really exist in the state of Wyoming. And then I went to Utah to go to school, which is a predominantly very strong religious power there.

(08:11):

And for me, I was like, "Oh, I'm trying to date women and I'm trying to follow this path of finding a wife and getting married and realizing this isn't for me. And actually I'm not interested in women. I'm interested in men and I'm gay." And so, college was really the time where I started to break free of those expectations of the North American dream, make lots of money and have a wife and kids. And I was like, "Oh, neither of those things work for me." And I can't be those things. That's someone else's expectation and I have to be authentic to myself.

Jodi Beckstine (08:43):

Yeah. I've kind of followed a similar path where I was born with dwarfism and from my experience is a lot of people expected you to go into the entertainment industry because you couldn't hold a real job. And I kind of went that way a little bit and then got married very young and widowed very young. So, then trying to find my place in my 20s of what do I do because I wasn't really set up to do anything else. I had always been like entertaining and doing those things. I'm very similar in age to you and now going, "Where did all that time go? What did I do with it?"

(09:27):

But to find out those pressures that you have internally for yourself, and it's another thing to kind of navigate them when you're now out online and sharing your experiences online. And you've shared so much of your life publicly through speaking, through your advocacy and online platforms. How have you learned to stay grounded in yourself while other people are constantly reacting to or projecting their ideas or assumptions about your story on you?

Spencer West (10:00):

Yeah, I think there's two things. A, I'm 45, so I've had a lot of life experience and I understand that a lot of what comes at me isn't actually about me. It's about where other people are at in their life or their insecurities or experiences they've had that then they project. That's the first piece. The second piece is a lot of therapy. I have a therapist, she's really fantastic and that's been really helpful to have someone to talk to. And I've got great friends who can play the role of therapist, but to have a professional that I can talk to is really helpful.

(10:33):

And then I have my own sort of spiritual practice that involves meditation and some really lovely things that help me in those difficult moments because that definitely happens. And although I choose to be in the online space, that doesn't give people the right to treat me the way that they do. And I want to make that very clear. I think some people are like, "Well, you chose to be online, so this is what comes with the territory." I'm like, "No, it doesn't have to." It's like we're giving people a pass, but what I can control is how I respond to it and how I feel about it. So, my friend always says control the controllables, and that's what I'm doing through these practices and through therapy.

Jodi Beckstine (11:09):

Yeah. I wish as Xennials and Gen X, we learned more in our 20s about meditating and seeing therapists and all that. We were definitely raised to the pull yourself up and just do it and plow through. And I think it's very important that you mentioned that you do have to kind of reach outside yourself for help from others as well as yourself.

Spencer West (11:35):

Totally. And I think as disabled folks, I think it's so important. I had so much unexamined internalized ableism from the time period that I grew up in, and I had no idea that I was coming and acting from that place. And it was just so helpful to see some of those things and to work through that still comes up and I still experience that, but it's easier to recognize now. And I think as disabled folks, I think that's really important depending on what time you grew up in.

Jodi Beckstine (12:03):

Absolutely.

Keith Casebonne (12:04):

Yeah, for sure. No, I'll third the option of therapy there. I think it's a wonderful thing. My undergrad was psychology and I never saw a therapist until I was around 40. But then when I did, yeah, everything changed. In fact, it helped me get out of traps that I'd been in before. And so, I just still go even if I have nothing much going on. It's just as you sit and chat, something comes up. Something's always there.

Spencer West (12:35):

Totally. Totally.

Keith Casebonne (12:36):

Yeah, for sure, for sure. So, there's this whole social framework shaping how people are received. And so, we'll widen the lens a little bit here because all the experiences we talked about, they never really happen in a vacuum, right?

Spencer West (12:53):

Totally.

Keith Casebonne (12:54):

So, in disability spaces, conversations about confidence or self-trust can sometimes get reduced to an individual mindset, where in reality, people are also dealing with access barriers, bias, social pressures. How do you talk about personal freedom in a way that still makes room for all those larger realities?

Spencer West (13:16):

Yeah. I think this is what I try to do with my content online is to give people a full 360-degree picture of what my experience is. So, yes, there's lots of joy and lots of fun, lots of things, but there's also a lot of really challenging things. A great example is just recently, I was coming back from a trip and I can obviously drive and I parked my car at the airport. I parked in an accessible spot and I never forget, I always forget what that's called, but the in between where they put the diagonal lines where you're not supposed to park, so it gives people space for ramps or whatever to get into their car.

(13:52):

Someone had parked in that space. I know. Now my privilege of my disability is I can go through the back of my car and that's typically what I do. I drive an SUV, but it's still, I was like, this is the reality that we deal with on a daily basis. This is a barrier. Someone has no idea or understanding of the disability experience and then takes up space unnecessarily and then causes a lot of havoc for everyone else. And so, providing that sort of real world perspective and helping non-disabled folks understand what our experience is.

(14:24):

The thing that I try to talk about often, because it's sort of subtle and that sort of like underlined microaggression of ableism is when people are like, "Oh, seeing someone like you makes me feel like I can get up and do anything now." And I try to break that down and let people know, I know that you think that this is something that you're trying to express that is nice and that I'm going to take in a positive way, but as I'm sure the two of you know as well, it's like, it's such a blackhanded compliment of like, "Thank you for showing me that your life is so much worse than mine and that my life is so much better.

(14:59):

I really appreciate that you are out here today to remind me that my life is so much better than yours." A, you don't know if that's true and B, that just feels so. So, I try to give that full perspective of this is what our experience is. And yes, there's some cool things, but there's also a lot of ridiculous things that we have to deal with and barriers and as a person as well. So, I try to give that full picture.

Jodi Beckstine (15:25):

When I make new friends, I always have to tell them when we go places, there will be people that are going to come up to me. Some people will try to pick me up. Some people will like pet me on the head. Some people will want to pray with me, just be aware that that's going to happen. I can handle it. You don't need to step in.

Spencer West (15:42):

Totally.

Jodi Beckstine (15:42):

You always have to have these things to kind of prep new friends about how your world is when you know that it's going to be shocking to them.

Spencer West (15:51):

Yeah. Totally. Totally.

Jodi Beckstine (15:54):

Well, so for listeners who are carrying anxiety and self-doubt or pressure to perform versions of themselves that they feel might be acceptable to everyone else, what has genuinely helped you move forward toward a life that feels more honest and more self-directed?

Spencer West (16:13):

Yeah, I think there's a couple things. I think it's part of the book is like understanding the expectations and the world that we operate in and where we can unplug from that and where we can let go of some of those expectations. I'll give you a real world example. I think it was in one of Alice Wong's books or might have been Community Care by Leah Lakshmi, but one of the disabled activists, I wish I could remember which one now, I read in one of their books that we as disabled people, we don't have to be everyone's educator all of the time. And that was such a radical idea for me.

(16:54):

I thought that it was my role as a disabled person that regardless of I was at the grocery store or buying clothes at the mall, that if someone wanted to ask about my disability, it was my responsibility to tell them about that so then they could be educated. And having this idea that I could say no, that I didn't have to tell random people my story felt like such an act of revolution. And just to have the language to say, "Oh, I'm not here to talk about that today." And then to use my platform to educate folks to say, "You don't need my medical history to understand my experience.

(17:32):

The question you should be asking me is, how are you finding accessibility here today?" And in all things in life, you should be asking for consent first. You know what I mean? So, this idea that we get to choose the life that we live and we are allowed to say no and we are allowed to have boundaries and we don't have to be everyone's educator, that was like such a radical notion for me. And so, I try to pass on those things that I learned to other folks as well in hopes that then they can take that on. And just having the language.

(18:03):

Sometimes, we just don't have the right language to say, "How do I say no to this person? How do I say, no, thank you. I don't want to share this experience with you today." I don't know. I'd be curious to hear your experiences with this kind of stuff as well and the things that you do.

Jodi Beckstine (18:16):

I am perpetually an oversharer and it's because of that. I feel like I have to educate people. I'm dealing with that now, being in middle-aged, but it's also, I feel like I'm maybe the first little person that someone's ever come across besides what they see on TV. So, I need to bust all these myths really quick and make sure that they get everything right and know. And it really takes a lot, like you're saying, to say, "It's not the time for that. I don't have the spoons for that today." That's not what I want to do, but I'm one of those people that now, because of that, I'm an open book.

(18:54):

The first 10 minutes you meet me, you know my whole life story just because I feel like I have to set that up. I have to be the first person to have a short joke so I can break the tension in the room.

Spencer West (19:09):

Totally.

Jodi Beckstine (19:10):

It's like always performing when you meet new people and it's tiring, it's exhausting. But as you get older, you start caring less and less about those things. I've come to find out. So, my experience is that I'm working through that with therapy to not... You don't need to know my whole life. And I'm Jodi, nice to meet you and that's it.

Spencer West (19:33):

Totally. And I think you're in such a beautiful place of exploring all of that and it's so lovely to hear. And this is the important thing is not everyone's in the same place at the same time. And I think it's also the idea that we can have boundaries and flow in and out of that. I know when I speak, when I first started speaking professionally, I would get to the end of my speech and then people would raise their hand. The first question they would ask is about my legs or about my body and I was like, "Oh, they heard nothing else because I didn't tell them about my disability."

(20:03):

So, I addressed my disability right at the beginning in a professional setting because it's like, if I'm not going to talk about that today, that's not the whole focus of the speech, then I want to get that out of the way. So, then you can hear the other things that I have to say because although I'm proud to be disabled, that isn't the only identity and only thought that I have.

Keith Casebonne (20:19):

Sure, sure.

Spencer West (20:20):

So, I think it's weaving in and out of that. Keith, I'd be curious to hear your experience in that.

Keith Casebonne (20:24):

It's interesting when it comes to saying no, that actually was something more of an issue in my professional life. And so, it was a challenge for me to tell others no. So, working in communications and also like I did a lot of IT and stuff, so I was someone that people came to all the time with like, "I have this problem or I need this or I need that." And sometimes, those things weren't necessarily the most urgent thing in the world, but I thought, "Oh, but it's my job and they need help and I need to stop what I'm working on now and go take care of that." And finally someone, just a supervisor in the past said, "It's okay to tell them no." And I'm like, "Well, is it? Really?"

(21:09):

No. Really? Yeah. And then anyway, so long story short, yeah, it changed my professional life at least. Some reason I seemed to be fine with it in other aspects, but on the job I felt like, "Well, it's my job. I can't say no." But you can. I mean, you don't have to be rude or a jerk about it, but you can say, "Well, that doesn't sound like a very urgent thing. I have time this afternoon. I can help you then or whatever." And so, it was literally life changing. So, yeah, it's incredible.

Spencer West (21:43):

Yeah. That idea that we needed permission to say, no, I think that's another expectation like, "Oh, we're supposed to be accommodating. We're supposed to help everyone." It's like not at the detriment of our own bodies and minds and energy, we are allowed to navigate that space. So, I think it's beautiful that that's an experience that you had.

Jodi Beckstine (22:04):

Yeah. You're disabled. So, you're supposed to be friendly and you're supposed to be grateful and you're supposed to educate. There's this little box that you're supposed to fit in so that you're patible to everyone else.

Spencer West (22:15):

That's right. Yeah. It doesn't have to be all the time.

Jodi Beckstine (22:19):

Absolutely. Absolutely.

Keith Casebonne (22:21):

Absolutely. Absolutely. Well, this is a really good grounding note for, I think our listeners to sit with. It's a good place to... We'll begin to wrap up. But before we do, so on Disability Deep Dive, we have a second segment after the interview called The Deep Cut, where we talk about media and disability spaces. And so, we love to always ask our guests, is there a book besides your own? Can't do that. Sorry, not that easy. A book, a TV show, a film, song, anything like that that's maybe resonated with you lately or anything you want to share with our listeners?

Spencer West (22:58):

Yeah. So, there's a couple of things. I mean, one of the books that I recently loved is Tiffany Yu's The Anti-Ableist Manifesto. I don't know if you all have read that. It's fantastic. And it's a really beautiful guide for disabled and non-disabled folks to learn about our community and to understand how they can show up and how they can start fighting ableism themselves. I really loved that. So, I would definitely recommend people check that out. If you're new to the world of disability justice, it's a great introduction. One of my favorite shows on TV right now is The Pit. I don't know if you guys watch The Pit.

Keith Casebonne (23:35):

Same. Same. Yes. Yes. Yes.

Spencer West (23:38):

Not only is the show amazing, but the disability representation is so powerful and so amazing. And to me, they're getting everything right by having regular stories about disabled people played by disabled people, having regular characters that are portraying the disabilities that they have in real life and showing it in an honest and brilliant way. This season, there was a deaf patient who they saw the complexity of navigating communication and how the hospital wasn't set up for it and the technology wasn't working. And I think they're just doing such a fantastic job of that. And then there's a beautiful show. It's a few years old now, but it's called Special and it's on Netflix.

(24:19):

And it's about a man that's disabled, that has a physical disability navigating their dating life and just life in general as a person. And we rarely see disability representation in a space, specifically in the context of physical intimacy. And they think they did just such a beautiful job of portraying that. So, those are some of my faves, but The Pit right now is, that's where it's at.

Keith Casebonne (24:46):

Yeah. We talked about The Pit in one of our deep cuts actually from our first season, and it had only been the first season of The Pit. And now having watched the second season, I'm like, "It just got better. They're doing more." I almost wish we had waited to talk about it just because there's a whole variety of things that we could have discussed at this point. Yeah, no, totally. I love, besides just being a wonderful show, period, the disciplinary representation part of it is just incredible for a mainstream TV show. Yeah, I agree.

Spencer West (25:21):

Yeah. Just tackling all of the topical things that are happening in the world right now from women's bodily autonomy to immigration and what's happening with ICE and all those things, I just really appreciate... I think it's a really good model for other TV shows to recognize that you can bring real world examples in to help educate folks on what's happening. So, I can't say enough great things about it.

Jodi Beckstine (25:49):

I agree. I agree. All right. Well, Spencer, thank you so much for joining us. It's been such a great conversation. I'm really excited. And people, if you are listening, please go ahead and get Spencer's book. It's phenomenal.

Spencer West (26:05):

Awesome. Thank you so much, folks. It was such a pleasure.

Keith Casebonne (26:07):

No, our pleasure. Thank you. Going deeper, deep cut coming up.

Jodi Beckstine (26:18):

So, for today's deep cut, we're talking about Breaking Free, Stop Following Expectations and Start Following Yourself by Spencer West. But before we get into it, I want to say that we're not going to just give away the personal stories in the book. A big part of the experience is discovering those for yourself.

Keith Casebonne (26:32):

Instead, we're going to talk about why this book is worth reading. Breaking Free is part memoir, part guide, and part invitation to look at your own life. It asks questions about expectation, purpose, fear, help, community, and what it means to stop waiting for permission to live the life that you actually want.

Jodi Beckstine (26:54):

Yeah. So, today we're talking about Breaking Free as a book that can speak to people with disabilities, but also to anyone who has felt trapped by fear, expectations, approval, or the idea that it's too late to begin again. So, one of the strongest ideas in the book is that breaking free does not always mean one big, huge, dramatic change. Sometimes, it means recognizing the expectations that you've been living under. What did you take from that idea?

Keith Casebonne (27:21):

Yeah, I thought it was really great how he talks about things in various... Things are broken down into real nice, easy, manageable pieces. You don't have to make, like you said, massive changes all across your life to get someone... You can change one thing at a time, and it really helps you examine what in your life those things are. I know I related to some of the stories he mentioned as things that I'd dealt with in the past, and hopefully I think I came out on top of those things. And then there's a couple things that maybe I still could do something with that I might want to change. But it was really good to look at it in different little chunks like that.

(28:07):

And yeah, it's a book that I think everybody can get something out of. And it's not overwhelming at all. It's simple. Yeah.

Jodi Beckstine (28:20):

I like how it wasn't just a book, even though it was about his life, it wasn't just a book of, here's all his achievements. It really talked about the work he did behind all of the steps forward that he made and some of the steps back that he had to reflect on. I really appreciated that. Exactly.

Keith Casebonne (28:38):

Yeah, me too. Me too. Well, there's a powerful thread in the book about the shift from childhood to adulthood. For many people with disabilities, childhood can come with praise and encouragement, but then adulthood brings barriers and discrimination and lower expectations. So, how did that connect for you?

Jodi Beckstine (28:57):

That really stuck with me. Growing up with a disability, having one from day one, you're told, "You can do anything, nothing's going to stop you." And that encouragement is important for a child, but when you become an adult, suddenly the world stops thinking those things to you. It becomes more like, "We can't hire you because, and you can't do that, or this space isn't accessible to you." And that can be shocking coming from, especially the transition from late teens to early 20s, you're praised for being confident and resilient, and then you realize confidence doesn't remove barriers.

(29:40):

A lot of times, it was your parents advocating for you that made those things possible. So, I appreciate it that the book doesn't just make it a mindset shift. It talks about the fear and the barriers and the doubt, the frustration Question that you feel when making those changes.

Keith Casebonne (30:04):

Yeah. I think those are the really good points that you made there about that sort of different way of how your outlook of the world or the way that the world is presented to you is different when you're a child. And I think that probably, I'm also going to say as a universal, I think a lot of people probably feel sort of similar. As a child, you're told you can do all these things. Yeah, you could do all these things until then suddenly you can't. And it's like you're just cruising along and then suddenly, this brick wall comes out of nowhere and you're like, "Whoa, when did this all change?"

Jodi Beckstine (30:38):

Yeah.

Keith Casebonne (30:39):

It's rough. Yeah.

Jodi Beckstine (30:41):

And you do notice hopefully that you had parents or adults that kind of broke some of those barriers down for you that you didn't realize were there until you became an adult. That was the biggest thing for me. I grew up, I don't want to say sheltered, but I didn't have to do a lot of advocating for myself young. I didn't have to be until I became an adult. So, it was a stark change for me.

Keith Casebonne (31:07):

Yeah, no. I bet. I bet. I bet.

Jodi Beckstine (31:09):

So, one part of the book that really stood out to me was when Spencer pushed back on the way people compare their struggles to his disability. Why is that framing harmful?

Keith Casebonne (31:23):

Yeah. So, yeah, he really makes good points about how really ableist comments like that are and the idea that he's not your inspiration. He's not there to, "Well, if you can do it, then surely all the rest of us can do it." Yeah, that's not the point. And that's very ableist. And I think it's kind of a gross way to look at things. Plus, again, it's that whole inspiration trope. And I think he uses the term inspiration porn very specifically in the book that that's not what he's there for for you. And I thought that was great.

Jodi Beckstine (32:03):

Yeah. It's one thing to learn something from someone with a disability. It's another thing to measure your life to theirs and what's good and bad about both. Again, like you're saying, it does lead to that inspiration trope that is ick.

Keith Casebonne (32:18):

It is. It is. So, it's a very important distinction. There's a difference between saying, "This person's story moved me and saying, well, if someone with disability can do this, then what's your excuse?" So, how do you think listeners should think about that difference?

Jodi Beckstine (32:37):

You had said it, that's where ableism comes in. A person cannot be reduced to their disability in order to be your life lesson. It turns us into this comparison tool about disability instead of recognizing the person is so much more than that. It may not seem to someone on the outside that they are, and that's so ableist. But I appreciate that he doesn't let the reader kind of sit in that too long. The point is to look what he did without legs. That's not the point he's trying to make. The point he's trying to make is he's had this lived experience. He gained this perspective and he gained wisdom from it.

(33:24):

And that's what you should be taking from this story or this experience that he's had. And that's just such a better conversation to have than look at what you did despite. And people with disabilities aren't props in your motivational story or people with lives and lived experiences and-

Keith Casebonne (33:50):

For sure.

Jodi Beckstine (33:51):

... we need to notice that.

Keith Casebonne (33:53):

Yeah, absolutely. Absolutely.

Jodi Beckstine (33:55):

So, Spencer writes about being an openly gay man and navigating dating while people reacted first to his disability. He talked about having these great conversations with people on the phone or online and then meeting them for the first time. This connects to something that we talk about often on the show, that being visible is not the same as being understood. Did that section bring up anything for you?

Keith Casebonne (34:23):

I found it pretty interesting. Again, it almost goes back to the previous topic we were just talking about in the sense that we're all complex, unique individuals, and we all have different stories and different points of pride and different challenges and different failures and different successes and so on. I mean, it sounds like such a silly thing to say, but there's just so many aspects to just being a human being that you can't water it down to something like, oh, disability. Okay, well then that person's going to have this set of whatever, issues and accomplishments and challenges and whatever.

(35:10):

And this group, all these groups intertwine and we're all... So, again, there's that intersection between disability and sexuality. And this comes up in other topics we've talked about in different ways. In this case, he's both disabled and gay. And I think it's a shame that he had those challenges. And someone gets an idea of who you are based on a phone call and then meets in person and suddenly goes, "Oh my gosh, I did not realize there's this about you or this about you." I don't know. I find that to be, I don't know, that makes me sad. That really bums me out, if I'm being honest.

(36:04):

There's different ways that I can sort of relate to those feelings. And it's hard that you can come across one way and then someone sees a different aspect of you and suddenly, you're a whole different person. I don't know.

Jodi Beckstine (36:26):

It's rough. I play an online MMO and I don't usually... I get to know people. There's people I've played with for 10 plus years and you get to know these people on a certain level. And some people have no idea that I have dwarfism because it's not relevant to what we're doing.

Keith Casebonne (36:44):

Sure.

Jodi Beckstine (36:44):

And I wonder about how their perspective would change of me if they found that out. Or someone in the big group will... This is my thing I keep coming back to. Someone will say the M word and I immediately, all the hairs on my neck stand up and I get all rural and I try to make it a teaching moment. But along with that comes with, by the way, I'm a dwarf.

(37:08):

And sometimes, you can tell that people's idea of who you are changes because now that they know there's this other level. And sometimes, I feel like if I'm not telling them, am I lying to these people? Am I keeping the relationship at a distance by not giving that extra little piece of who I am? So, it's complicated. It can be very complicated.

Keith Casebonne (37:31):

But it should be the same as I have brown hair. I mean, who cares? It doesn't make me a better or different or whatever person and you know who I am. We've interacted in the game and so on. So, I don't know, that's the problem is that it should just be like anything else. And unfortunately, certain aspects like that, again, disability, sexuality, those types of things, they get this big asterisk next to it like it's something we really need to worry about or it changes things. No, you're the same-

Jodi Beckstine (38:01):

It really doesn't.

Keith Casebonne (38:02):

... person. Yeah.

Jodi Beckstine (38:03):

Yep. I'm the same person I was yesterday without you knowing that I have dwarfism.

Keith Casebonne (38:07):

Right, right. Why did it change?

Jodi Beckstine (38:09):

Yep.

Keith Casebonne (38:11):

Yep. So, chapter nine talks about defying your own expectations and not concerning what everyone else's. Why do you think that idea can hit so deeply, especially for people who have spent a lot of time trying to be accepted or understood?

Jodi Beckstine (38:26):

That section, that chapter was really powerful for me because he talks about defying your own expectations for yourself, not worrying about what other people have for you and expect of you. And that made me think about my childhood a little bit. I seemed like a very confident and outgoing child. I was always kind of cracking jokes and doing little dances and kind of bringing the attention onto myself. But inside, there was a lot of internalized shame around my body and around having this visible disability. You see me, you know what's going on or you can assume what's going on.

(39:06):

And so, because of his questions that he asked the things, I started thinking about my childhood and how I spent a lot of my time seeking approval and seeking love instead of really going after things that I was passionate about and things that I wanted in my life. And then now as a middle-aged woman, confidence shifts yet again. And you look in the mirror and you see the lines on your face and the life that you lived and that affects how you feel you're seen to the world. And I've talked about this before about the podcast going from audio to video and being on camera is not comfortable for me, but I think that this podcast is important.

(39:52):

And so, I remind myself that my discomfort is kind of temporary and I kind of try to defy the expectation that I have on myself of, no, I need to kind of hide away and push myself. So, that was a really deep and powerful portion of the book for me. It required a lot of reflection and deep dive into myself.

Keith Casebonne (40:18):

Yeah. Yeah. Understood. Yeah. I felt the same way. I thought it was very powerful and it does make you step back and really think and try to find what those sort of internal expectations are that you need to sort of overcome. And sometimes, I just remember the idea that the only person in the world that really cares about your problems or deficiencies is you. Most people don't really care in the end, and so get over it and just do it. But our own internal fears can be so challenging to overcome. So, yes, it was a really interesting chapter and I agree, it made me think a lot.

Jodi Beckstine (41:00):

Yeah. So, another idea that I loved is that simple joys don't have to become these huge achievements or careers. What do you think people can take from what he said about just remembering your simple joys?

Keith Casebonne (41:16):

Yeah, I thought that was really nice. It's the kind of stuff in the book that really makes the book... I found the book, I don't want to make it sound like I'm putting it down in any way because I'm not at all, but it's simple. When I say it's an easy read, I mean that it's written in a way that you can get into it very quickly. You can understand things very quickly. There's not a lot of jargon or terms you have to learn or psychobabble, let's say, or things like that. It's just written in a really plain language, straightforward way.

(41:56):

And so, I'm not quite answering the question, but the idea being that you then... He gets into things that are just like... Every little thing, every little tiny accomplishment, whether it's getting up and getting out of bed that morning, to changing careers or changing your life goals, they're all important and they're all worth celebrating and every little thing counts. Every step you take is it matters and there's something about that that's important and you should be happy and celebrate that. So, I think, again, it's another aspect of the book that I think makes it very, again, easy to get something out of quickly and feel good from.

(42:50):

And it's not like there's a whole bunch of steps and you got to read half the book before you really make any change or get anywhere or understand. Yeah, I like that about it. And yeah, I think it's most of the reason for me to even pick up and read the book is that it turns little small things into very impactful things and you feel good.

Jodi Beckstine (43:14):

Yeah. It kind of was a continuation for me of our interview with him because it's very conversational. It's almost like you're sitting down and just kind of talking to him about his life. And I remember feeling very joyful and very happy after the interview was done. He's very easy to talk to. It was just very, very calm and like we had known him for years. And I kind of felt the same way after reading the book. I just felt a deeper knowledge of him, started gaining some knowledge of myself, but there was this joy at the end that, wow, I feel kind of ready to go. And so, I think that's-

Keith Casebonne (43:51):

Exactly, exactly.

Jodi Beckstine (43:52):

... what people can take from it, definitely.

Keith Casebonne (43:54):

Exactly, exactly. And now we're good friends with Spencer.

Jodi Beckstine (43:57):

Yes, he's our best friend.

Keith Casebonne (43:59):

That's right. We hang out all the time now. But you feel that way. You feel that way talking to him.

Jodi Beckstine (44:03):

Yeah, absolutely.

Keith Casebonne (44:04):

And you feel that we read the book too. You know him now. You have a history. It's great. Well, Spencer also talks a lot about moving from passion to purpose. Why did that feel important to you?

Jodi Beckstine (44:21):

Well, I think purpose is often talked about something you have to figure out when you're young and you need to carry that purpose forever through your whole life. And life doesn't work that way. Things change, you change. Circumstances around your whole life can change. And for young adults who are trying to figure out who they are, new parents that are just trying to figure out their new identities now, and people that are now empty nesters, their children are gone and moving out of the home, these are major things that happen into your life and they can make you go, "Okay, what's my purpose? Why am I even here? What am I supposed to be doing?"

(45:04):

And I appreciate that the book kind of tells you, "Revisit that. Revisit your purpose." It's okay to do that and you could still change. It's not too late. You can rebuild something that you love to do when you were 10 and you can do that again at 65. That's what really I loved about it.

Keith Casebonne (45:27):

Yeah. No, I think some of the greatest stories you hear out there are people who find themselves when they're middle-aged or older, they discover something and they make a change. And next thing you know, they're impacting the world in some way that they weren't before. And I'm always like, "Gosh, at any point, you don't have to think your time has passed or anything like that. You can always do it."

Jodi Beckstine (45:51):

Always learn, always keep growing, always keep doing.

Keith Casebonne (45:54):

Indeed, indeed.

Jodi Beckstine (45:55):

So, the book talks about what holds us back from asking for help, fear of judgment, fear of rejection, fear of betrayal, lots of fear. And even the myth, especially as someone who's disabled, that you have to be able to do it alone. That means that you're doing the right thing. Why is asking for help such a hard lesson, do you think, for so many people?

Keith Casebonne (46:18):

Yeah, it was a hard lesson for me to learn, honestly. I still have a hard time accepting help occasionally, but much better than I used to be. So, I understand this very well. I really do. I think there's a lot of people, and I think at the risk of sounding stereotypical, I think a lot of guys feel like, oh, they're not tough and strong if they accept help. It makes them quote less of a man or whatever, which is total BS. It's just ridiculous. And it's sort of like this, I don't know, machismo that we get taught when we're kids or something that you're tough and strong and you can do it yourself.

(47:02):

And again, to some degree, that's good. I mean, to learn independence and feel good about yourself and be strong, but not at the expense of then avoiding help when you need it, when it can actually be there for you and make a difference. I think really one of the strongest things that you can do is know when you need help and then ask for it. That's just almost a skill. I mean, that's almost something that you, again, you have to learn and adjust about yourself. But yeah, I think a lot of us are just grown, we're trained, if you will, to believe that help is a weakness, and it could be further than the truth.

(47:50):

And so, yeah, I totally related to that very, very well. So, on that same note, there's also a shift later in the book from receiving help to then helping others. How did that land for you?

Jodi Beckstine (48:06):

Well, it kind of made me think of where I am currently in my life. I haven't been part of the disability rights space very long. It's been, what, maybe a year and a half. Most of my advocacy has been for myself. It was about my needs and my access and my survival. And now I'm thinking about other people and about community and systems and rights and advocacy beyond my experience. It's kind of shown a light on my own internal ableism that asking me two years ago, I wouldn't have thought was there. And I've had to look at my own ideas of what I believed growing up and thought to be true.

(48:50):

So, I think this section of the book mattered to me because it's not the same as being connected to community and connected to others and growing with others. And that's how you give back. Asking for help is good and providing help as you can for others is just as rewarding. So, I really liked that, how he made that it's okay to ask for help and here's how you return that favor, that help you got by helping others.

Keith Casebonne (49:28):

Yeah, pay it forward.

Jodi Beckstine (49:29):

Yeah. Yeah.

Keith Casebonne (49:29):

Yeah, absolutely. No, I love that answer. Yeah.

Jodi Beckstine (49:32):

So, Spencer talks about boundaries, saying no, being kind to yourself, setting goals that are simple and trackable. Why do you think that matters in a book like this about breaking free?

Keith Casebonne (49:46):

Yeah, I think you can't fully break free if you always feel like you're stuck behind a boundary or you have to do whatever everyone else asks of you and you can't say no, that would be wrong. You have to do whatever, even if it's going to hurt you and your goals. So, I think it's key. I think it literally is the key to breaking free is to realize that a lot of the boundaries are self-imposed. They're not really impenetrable. You can get through them, you can get past them. And saying no is a challenge. I want to say that's another thing I related with very well about asking for help or feeling like help is a bad thing for whatever reason. I used to have a very hard time saying no.

(50:36):

And when you finally learn that you can say no and it's okay, you're not suddenly hated or thought you were some horrible person. It is honestly one of the most empowering things you can do for yourself. And so, again, that was a trap that I broke free of. And so, yeah, I think that's the idea of these traps is all over the book. I mean, I mentioned it in the interview with them that it's even got a capital T. It's sort of like the villain of the book is the trap. And so, I think it's just a really great way that it was framed. And so, yeah, these are all traps that you have to break free of. So, I think they're all tied together, but absolutely.

Jodi Beckstine (51:22):

Yeah. I think the word boundary has a dual meaning. It's the boundaries that people place on you of what they think you can do and what they think you can accomplish and what they think you should. And then the boundaries of you putting up against others. Here's the line of what I feel and what I want to do with my life. And a lot of people have difficulty with both aspects of boundaries. So, it was a good chapter on that.

Keith Casebonne (51:48):

Yeah. Yeah. Well, after reading the book, what do you think others can take from it?

Jodi Beckstine (51:55):

For me, I think it made me think about things that I'm postponing dreams and goals as I am in middle age. It really reinforced that things aren't too late. Go back and look at your goals and set some for yourself. They don't have to be these big momentous things. I am not planning on climbing Mount Kilimanjaro, but...

Keith Casebonne (52:25):

Same. Yeah. Not on my list. Yeah.

Jodi Beckstine (52:26):

It's the little things. And I think the book invites readers to think about what are the things that you're talking yourself out of doing by saying, this is at the time, I'm not the person. And the more I got through it, even though his stories were sprinkled throughout the book, it was less about his life and more about him kind of guiding the reader to the next chapter of theirs, which was nice. And I think, again, it doesn't have to start with this big, huge decision, just small steps or steps. And I think that's what people can take from it.

Keith Casebonne (53:17):

Yeah, absolutely. I agree. I think those are all great points. And I think I see this all the time. And I mean, just every day, I feel like there's things that come up that if I wanted to, I could relate back to the book. And I'd say even a couple days after reading it, my older daughter, who was a young adult, she's 20 years old and she's navigating, trying to figure out college stuff and jobs and other, just having free time in her life and so on. Some of the things she was talking about were very much like the traps in the book. And as we're talking, I'm like, "Well, I have this book right here you might want to look at."

(53:53):

But I mean, seriously, there's things in here that I think are helpful for people at a lot of different points in their life. And those traps, we all have them, they come up all the time. And I think everyone can get something out of this book. I think it's a really wonderful book that I wish more people would pick up and read.

Jodi Beckstine (54:13):

Yep, definitely. Well, I'm going to take all the tabs out of mine and just share it once it comes out and spread the word.

Keith Casebonne (54:21):

I know my next to me, but I have the same thing. Mine's all littered with... Yep. Very cool. Very cool.

Jodi Beckstine (54:24):

Well, today we talked about Breaking Free by Spencer West, and we were careful not to give away any personal stories that the readers deserve to discover from themselves.

Keith Casebonne (54:34):

Yes, indeed. So, we hope you pick up a copy and thanks for joining us for this deep cut.

Jodi Beckstine (54:39):

Huge, thank you again to Spencer West for joining us and for sharing so openly about breaking free, self-doubt, expectations, anxiety, and what it means to build a life that feels honest and self-directed.

Keith Casebonne (54:51):

Yeah. You can learn more about Spencer West and his book, Breaking Free. Stop Following Expectations and start following yourself wherever books are sold.

Jodi Beckstine (54:59):

Thank you for listening to Disability Deep Dive. If this episode connected with you, please share it with someone who may need this conversation.

Keith Casebonne (55:06):

And join us next time as we continue to explore disability culture, rights, identity, and the stories that shape how we understand the world.

Jodi Beckstine (55:14):

Disability Deep Dive is a podcast that is brought to you by Disability Rights Florida, where real conversations about life, culture, and ideas meet the lived disability experience. Follow us on YouTube, Spotify, and wherever you get your podcasts. You can also find us at disabilityrightsflorida.org/podcast.