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Amy Julia Becker (00:05)
One of the things that I’ve noticed in raising three kids, one with a disability and two without, is that there are different ways that I am inclined to distort or reduce their full humanity. So for our daughter Penny, and for other people with disabilities, I find that we often focus primarily or even exclusively on her limitations and ignore or deny the rest of who she is. For William and Marile, my younger and typically developing kids.
I often focus on their possibilities and ignore or deny their real human limitations. And as I’ve thought about all of those things, I really ⁓ enjoyed this conversation that you’re gonna get to hear today with Brian Trapp. It’s about his own experience as the twin brother of Danny. And as you will hear, Danny lived with limitations, and Danny also lived a very full life with his brother and his family and his community. I’m Amy Julia Becker, and this
Is Reimagining the Good Life, a podcast about challenging the assumptions about what makes life good, proclaiming the inherent belovedness of every human being, and envisioning a world of belonging where everyone matters. Brian Trapp, my guest today, is the author of Range of Motion. He is the director of disability studies at the University of Oregon, where he also teaches creative writing and edits the Northwest Review.
His essay about being a sibling to his twin brother Danny was featured on NPRs Here and Now, and you can find out more at Briantrappriter.com. We will also put links in the show notes to all that information. And here is our conversation. I hope you’ll enjoy it as much as I did. Well, I’m here with Brian Trapp. Brian, thank you so much for being with us today.
Brian Trapp (01:49)
No problem. Thanks for having me.
Amy Julia Becker (01:51)
⁓ I would love to start our conversation by learning a little bit about you and your brother Danny. And I’m just wondering if you would start by describing your relationship. And I’m thinking back to like your childhood. Obviously, ⁓ you are no longer a child, but I’m thinking back to I don’t know, you know, elementary school, you and Danny as brothers, could you just tell us a little bit about the two of you?
Brian Trapp (02:13)
I mean, we are twins. So and he is older than me, so that’s four minutes. ⁓ and so he never let me forget it. If you would ask me who’s who’s older, he would go, ⁓ or you know, he would just laugh ⁓ about that. So he always lorded that over me. ⁓ but my brother was total care. ⁓ he could say twelve words. He had severe cerebral palsy and intellectual disabilities. ⁓ but you know, I think when I was very little, like I didn’t know he was
I’d like discovered that he was disabled, ⁓ kind of ha started asking the three or four, you know, why is he my standing in a wheelchair and that kind of thing, ’cause it was ⁓ just something I had to figure out. But for me, I think my brother was ⁓ my best friend, my playmate, ⁓ my audience. I would always be like telling stories to him, ⁓ and recording like singing to him and he would heckle me. ⁓ so we had a kind of playful relationship that way. ⁓
he with my race I’d race him around like the shopping mall and make like do wheelies. I didn’t really like to dance, but if I was dancing with Danny or helping Danny dance, then I could I could do that. ⁓ Yes. ⁓ you know, I so I think I found a lot of ways to to that he could play, like we played basketball ’cause he was illegally blind, you know, he’d always make it from the three point line. ⁓ or we play Monopoly, just a lot of ⁓ make just I think a lot of trying to make him laugh is one of the the things I I really enjoyed doing as a kid.
⁓ and and it was I got into trouble sometimes about that because ⁓ in my family you could burp at the dinner table ’cause Danny thought it was hilarious. ⁓ so I had my first sleepover where Danny wasn’t present and I like a good one going and I you know, belched very loudly and the family just did not react. So I was like, Well maybe maybe they need another one. ⁓ so I tried again and the dad was like, Damn it, that’s enough and slammed this and I was like, Okay, I have a
I have a different family, ⁓ yeah than that one. ⁓ but I think the kind of like body humor, body comedy my brother really enjoyed. If I if I hit my head on like the van or like stubborn my toe, he always thought that was really funny. So ⁓ yeah, we had a really close close relationship, even though he went to a separate school than I did. Okay. ⁓ I was a Catholic school. And I also think I was sort of his translator, like he could say twelve words and so I always had to sort of
Okay, this is what he’s trying to say, or I thought I knew him best. Yeah. and so that’s kind of how I I spent my my early childhood with with Dan.
Amy Julia Becker (04:47)
And as you grew up, like into adolescence, did anything change in how you perceived Danny or yourself?
Brian Trapp (04:55)
Yeah, I think I ⁓ well I think the benefit was I started to take on more caregiving duties. ⁓ and I kinda wanted to do that for because to me it was like proof that I was an adult. and so I I remember very vividly my mom teaching me how to give them a shower. I kinda recreated that in my novel a little bit. and ⁓ I think it really gave me a sense of meaning and purpose to help ⁓ in my family.
⁓ and so it kind of really my mom trusted me with him as well. ⁓ she even let me take him to camp, Camp Cheerful, which is in Strongville, Ohio, where like for an entire week she trusted me with her total care, very vulnerable child. And so I was about fourteen when when I did that. ⁓ and so like it was kind of a big thing to do that. And but also I was able to
had all the realized I had all this knowledge that other fourteen year olds didn’t quite have. ⁓ and so and and and it was also very a beautiful experience because it kind of allowed me to be his twin in a way I couldn’t in other places because there was no building he couldn’t get into, no activity he couldn’t do. And we could flirt with girls together and and be in situations where, you know, normally we work. because I yeah, I think
The other part of adolescence is that, you know, I was differentiating a bit more. kids maybe are becoming cooler. So the R word was very prevalent in ninety-five, ninety six, ninety-seven. Just like in the halls everywhere. And so it was kind of like a stab in the in the stomach every time I heard that word until I became kind of numb to it and started to use it as well. and I think yeah, so I became a bit more self conscious, maybe
struggling with feelings of guilt. Like why was I given, you know, why am I normal and he’s not? ⁓ kind of feeling like I need to be exceptional or I need to earn my place. ⁓ I don’t deserve ⁓ to be quote unquote normal. ⁓ and so I think I I struggle with that. And also I really got into biology and wanted thought about maybe studying medicine. And so I
really started to think, okay, there’s something wrong with my brother. ⁓ before I think I thought this is just why God created him this way, just you know, because that’s the way he he wanted it. Right. And and then as it became to think of the world more materially, mm, my like, okay, my brother’s a mistake, nature, you know, ⁓ screwed up or he kind of embodying that medical model, the pathology thinking. Yeah. And so that really kind of made me depressed and stuff like that.
and I think I had to really ⁓ think of other models a after that. So yeah, I think I I kind of struggled with some anger as an adolescent because of the way people treated him. They really ⁓ infantilized him or didn’t treat him as a full human being. ⁓ and then through the halls, the R word and all that kind of stuff. ⁓ and and kind of being very conscious of how isolated my family was, ⁓ especially where we grew up in Ohio and in in a suburb of Cleveland. So
Yeah, I think ⁓ there’s some more complicated emotions, but I feel like we were still very close. Like sometimes I feel like your siblings either, you know, that’s they’re absorbing that identity of the of the of the sib or they’re kind of wanting to lead a very separate life. and I think I was ⁓ it was easy for me to still be very close to him.
Amy Julia Becker (08:26)
Yeah, it sounds like it. And I appreciate just getting that ⁓ fuller portrait of your family experience. I’ve gotten a bit because I’ve been reading your book, Range of Motion, and we’ll talk about that in a minute. But ⁓ this all began for me because I read an essay that you wrote for Cognacente about your experience as a, you know, twin ⁓ with a brother who had cerebral palsy. And you’re talking about this idea of being a glass child. So I w thought for listeners who don’t know what that
concept of Glasschild syndrome is. Could you just explain that first of all? And then I just wanna talk about it a little bit.
Brian Trapp (09:02)
Yeah, it’s really com I think Alicia Maple’s ⁓ two thousand ten TED talk kind of I don’t know if she coined the term, but she popularized it ⁓ as a sibling of a of a high needs ⁓ child. So you know, usually disabled in in some way. ⁓ and and because of their high needs, the parents are sort of consumed with their care. ⁓ and it’s as if you are invisible or they look right through you, they don’t like
quite see your needs in comparison to your your siblings. ⁓ yeah, and I think, you know, for a lot of people it kind of became famous on TikTok. I think it you know had some steam in 2011, but then maybe 2018, 1920, 21, 22, there’s thousands and thousands of TikTok videos and ⁓ Instagram stuff that kind of went viral. Yeah. and I think that’s, you know, for
For a good reason where, you know, it kind of names a pain that I think a lot of people are taught not to voice. Okay. I think siblings can sometimes get lost ⁓ in in the shuffle. Yeah. ⁓ and and if we think of, you know, I think there’s a lot of sentimental model ⁓ of disability, like ⁓ you know, you so for for a family, you know, complaining, just grin and bear it. ⁓ you don’t have the right to
voice your own sort of suffering in in the in comparison to your siblings. So I think people kind of feel like that sometimes. Yeah. and and and it’s also I think was great for forming community of Cid. There’s not a lot of ways to talk about your experience. ⁓ and there’s definitely are some challenges with with being a sibling and I think it also was a little ⁓ extreme in its formation. So that really works well with social media, with sort of this the historical historical rhetoric of social media.
Yeah. ⁓ it got a lot of traction. So I do think it has done some some good in raising awareness and forming communities of ⁓ of how to think about sibling experience.
Amy Julia Becker (11:09)
You also write about how you were not completely compelled by this ⁓ analogy. So could you give us that side of the story too?
Brian Trapp (11:17)
Yeah. ⁓ I feel like it only makes space for pain. It only makes space for suffering. ⁓ Yeah. And so I I do ultimately think it’s ultimately an ableist kind of framing because the sibling experience in my in my experience and I think most siblings is it’s complex. It’s not just that one thing. ⁓ and I also think it echoes a dark history. So as I say in the essay, that was, you know, the the why ⁓
disabled people were removed from their homes, ⁓ especially if they had severe disabilities, was that it would take away from their other siblings, it would steal all the parents’ time and energy and that that their the kids would be embarrassed of their sibling. And so that was kind of a rationale for ⁓ some of the horrors of the institutional ⁓ era. and so I can really see some some repetition of the that kind of rhetoric. but most of all I think it blames parents for ⁓ you know, the the systemic
inequalities, you know, that we don’t give s enough support for disabled families. So no wonder they’re stressed out, no wonder they’re in crisis. ⁓ no wonder they don’t have enough time. ⁓ totally. We make the education system unmanageable, the medical system unmanageable, insurance system unmanageable. So you know, I think it has the wrong villain in in its in its formation.
Amy Julia Becker (12:41)
Yeah, I pulled a quote from your essay about this and I’m really just gonna be repeating what you just said, but I think it’s probably worth doing that because ⁓ for listeners who have not thought about this before, ⁓ this is what you wrote. Now in an America that often keeps our special needs families in a state of perpetual crisis as they attempt to navigate under-resourced social support, medical and educational systems, so called Glass Child syndrome risks equating systemic societal failures to bad parenting.
It reduces the complicated and artful interdependent dance of giving and receiving care to mere sacrifice and burden. And I just thought that was so well put and really ⁓ I guess kind of convicting for our society, which I think is what we don’t us kind of collectively want, to say, actually, this is not about bad parenting and it’s not about
Even like I think the other way you can do it is just to pathologize the person with the disability as if it would be better if they weren’t here, right? Like ⁓ and that we can see that whether that’s institutionalization or ⁓ when you know, we don’t need to go here, but some of the conversations around prenatal testing can go in that direction as well. ⁓ and I’ve done a lot of thinking about how the decisions we are making as it relates to prenatal testing are a collective decision as much as they are any individual decision.
Because they are decisions about who do we as a society want to support and care for. And ⁓ not just yes in policy ways, but also in terms of what you’ve mentioned a lot of essentially stigma, right? Whether that’s our word in the hallway or ⁓ just the kind of impressions of the family being stigmatized for having a person with a disability.
And all of those have more to do with who we are collectively than any individual decisions that are being made to, you know, prioritize one child’s care over another. ⁓ and so I’m curious, like with the Glass Child syndrome, when you first heard that, like kind of understood that, how did it prompt you for a little while to reinterpret your experience? Did it
ring true? Did it immediately ring hollow? Like what how did that affect you more personally?
Brian Trapp (15:02)
I was curious about it because like, ooh, this is a term that I can like think about myself with. And and I actually the person who asked me this was was one of my students and her ⁓ her sister had died of cancer and so she was also a glass child, but maybe you know, disability for her I think was just much more debilitating and negative for her experience. She lost her sister very young and ⁓ it was less it is more like here’s this person who was killed by this
this toral disease. But for my twin brother, it’s like, okay, it’s a condition. He’s always had it. Yeah. It was always very much part of him. And what I also, you know, I I had to love his disability ’cause it was him. ⁓ and so, yeah, I think I was interested in it, but then thinking, okay, then I did some research and I said, Well, what are the symptoms of Glass Child? And there’s like, you know, fifty notices, like everything that could go wrong with you is listed in that. And and
You know, and I’ve struggled with some of that. Like I one of the things is codependency. I was in a relationship with someone who had alcoholism. I actually was another sibling. ⁓ and I think my my experience had primed me for that experience a little bit ’cause it’s like, you need some help. I’m good at that. ⁓ stretch some boundaries. I’m good at stretching boundaries. ⁓ and so I think but at the same time it’s like, well, I also love patience. I love the willingness to help somebody ⁓ about myself.
Amy Julia Becker (16:13)
Yeah.
Brian Trapp (16:27)
there’s actually like I I’m part of like s the Sibnet group on Facebook and I think, you know, that’s a really diverse ⁓ community. ⁓ but sometimes I think there’s ⁓ there’s some siblings who think like disability ruined their lives. And then there’s then there’s like this another group with ⁓ loss who have the loss of a special need sibling and it’s like, you know, we just want our sibling back. Like that’s there’s like two different rhetorics and one of the things that one of the siblings posted on the the the sibling loss was
My my brother was everything I liked about myself. Which is like, okay, so you have this whole list of pathologies, and you have this person thinking, No, he’s everything I loved about myself. And the so where’s the where’s the nuance? Where’s the the sort of dynamic that could that could speak to the messiness of experience? Right. so yeah, I think like it’s just about like who you become when you have a sibling like that and like then what situations are you in and you are vulnerable.
to, you know, ⁓ certain habits, but it also is I think a disability gain what we call like, you know, using you things you learn from disability culture are are an alternative way of being that to improves your life and gives you a different way of being in the world. And ⁓ and I don’t I think by just using Glass Child it’s sort of just is the only negative framing. ⁓ and and and I talked to Alicia Maples personally
⁓ and you know, I think she wants I think we want the same thing. I think she wants more help for disabled families. But my my my pause is that I feel like she’s extending the pathology to the whole family. that there there has to be something wrong with you if you have a sibling with a disability. Like that that is the assumption. And I reject that I reject that assumption.
Amy Julia Becker (18:22)
It’s interesting because one of the things I’ve been thinking about recently is the analogies we use for parents who have, in my case, like a diagnosis of Down syndrome of a child. And ⁓ I’ve was thinking about how there are kind of two different ⁓ somewhat polarizing ways to ⁓ get an analogy here, right? So the first is there’s this famous essay by Emily Pearl Kingsley called Welcome to Holland. And she compares getting a down syndrome diagnosis.
To going on vacation and unexpectedly ending up in Holland instead of Italy. And again, there’s something that I can find that is true there, where I was like, I didn’t expect to see windmills, you know, like that’s not why I was here. But there’s also something where I’m like, yeah, my life is not a vacation, like even an unexpected one, right? Like that that’s not what and and there are some hard things that are not being like accounted for. But then I also have had people throughout my parenting journey who have said, well,
You didn’t know your kid was gonna have Down syndrome. Other parents don’t know that their kid’s gonna get into a car crash. And I’m like, so we just made Down syndrome like a car crash, which is like categorically negative. Not to say nothing good could ever come, but like it there’s the kind of the vacation analogy and like the tragedy analogy, neither of which is very compelling to me. And so I’ve been thinking recently about ⁓ the analogy well, these major stressors in life.
Including like death, divorce, but also moving. Like that’s like on one of the top stressors. And I was like, moving for me actually conveys something of the experience of being a parent of a child with a disability in that it is both ⁓ very again, there’s an uncertainty and a hardship and a stress involved. And there’s like possibility and wonder and like maybe I could trust that this is gonna be good.
⁓ and that to me was kind of like an analogy that worked, like that that fits more of the wholeness of the experience than either the vacation or the car crash analogies do. And so I I bring all of that up both by way of like I I wanna kinda talk about the stories we tell about disability, but also because you bring up a different analogy for your experience as a sibling, ⁓ in your essay for Cognizanti, ⁓ in terms of this idea of being a satellite. Like, can you
Just yeah, again, explain what the satellite analogy conveys to you and why you found it helpful.
Brian Trapp (20:49)
Yeah, I think I was kind of hunting for different ways of conceptualizing the experience. And I actually this essay had been mentioned several times to me in the few years I’ve been doing disability studies for almost ten years now. ⁓ by Julia Mele Rojas. ⁓ and she’s called Confessions of a Satellite. So she’s another sib. Her her brother is Josh Meley, who’s a famous disability technologist, a Guggenheim winner, but he he has very visible ⁓ burns on his face and he’s blind and
So for very visible disfigurement and so ⁓ she kind of conceptualized her experience as being next to this person and going through the world in in his orbit and and it it comes I think also like which I really relate to is my brother was very visibly disabled. ⁓ and the stare is so prominent from my from my experience, like just being out with him and just full of anxiety, what’s somebody gonna say? Are they gonna say something or stare at him and
And she writes, you know, h his body took up so much gravity, one body w had was meaning too much, where her body she felt like was not meaning very much at all next to him. Yeah. And and what is it like to go through life like that and go be in public? ⁓ and and but I think it’s a much richer metaphor in that it’s really about how does disability structure your life, even if you’re not physically or mentally disabled yourself. Yeah. And I’ve
felt like that was so like and that’s how you almost have a different gravity you’re experiencing going through the world. and she writes at the end of that essay, I’ve not been blind, but I’ve lived with blindness. Mm-hmm. And I thought that was so genius. And I mean, I think for me, like when I my d daughter was born, my brother had passed away and my daughter’s born and I’m pushing her in a stroller and my my wife is like, I’m like, there’s a cover cut out there, there’s a ramp over there.
how do you know those things? It’s like, I’ve just been, I see space in a different way, I realized. And so just that kind of thing, which is like, okay, how does how how do you move through the world in a different way? And so ⁓ what I like about this is it it inserts the disabled person back into the equation. It’s not just parents ignoring ⁓ one child, right? It’s like, okay, you are next to this person. How does that influence your experiences? ⁓ and it’s neither
It’s not negative, but neither is it all positive. so when she she writes in that essay about like ⁓ kind of really trying to help her brother, but also maybe in a and not in a way that he wanted or needed. And so a lot of my self-worth came from like I’m a help to my brother, I’m I’m better than other people. Like I feel like there’s a sense of superiority for special needs families that I think needs to be talked about a bit more because that’s also very interesting to me.
you know, going through the world, ⁓ performing Good Brother was also a thing that I would think about and and and the the authenticity of my kindness to him versus versus performing that. that was interesting to me. So yeah, are you using disability for your own ends or are you really giving someone the help that and aid and that interdependency, ⁓ the dance of interdependency. ⁓
So yeah, that that’s the things that the satellite metaphor ⁓ helps us see that that she’s she’s writing about. ⁓ and really what is your relationship to the disability community as a sibling or as a family member? because you cannot claim that identity, but it shaped your life in a dramatic way. So then what? ⁓ so so I really like the nuance of the metaphor. It’s neither like that it’s not tragic, it’s neither an inspiration or sentimental or all that kind of thing. It’s just like
allows you to see things that are more in a more complex dynamic way.
Amy Julia Becker (24:45)
I also, again, am a sibling parent, but that idea of like, I do not obviously identify as someone with Down syndrome. You do not identify as someone with cerebral palsy. And yet I very much identify with someone who has Down syndrome and feel like my identity is being shaped and formed in relation to that person. And I think that that sense of a relationship is somewhat ⁓
there in the satellite analogy, right? In a way that it certainly is not with the glass child, ⁓ just in that sense of invisibility, but actually like we and that interdependency. ⁓ and that is kind of been helpful to me to say certainly I cannot speak on behalf of like the disability community broadly or Down syndrome community more specifically, or even on behalf of my daughter particularly, right? And yet I also don’t want to like
Cut myself out of the equation or conversation altogether because I do think that families are a part of this ⁓ not just conversation, but actually of this whole web of interdependency and of both offering care, receiving care, ⁓ and and I don’t know, just needing to be kind of valued and considered in the conversation. So I’m just kind of curious how you respond to that idea of like not identifying as, but identifying with.
Brian Trapp (26:07)
Yeah, I think the disability studies scholar Al Alison Caper talked about disability as being a relational identity. ⁓ that also includ and we need to ask those questions of who is included and who isn’t and ⁓ and I think caregivers should be included in the disability community. I think they count I understand maybe some pushback from disabled people because caregivers were traditionally the ones who were asked to speak for
⁓ and we’re, you know, especially for memoirs, fictions, like people there there’s a really toxic history of caregivers like ⁓ you know, speaking for people with disabilities and then not able to voice their own experiences. So ⁓ telephone and all that kind of stuff, that’s that’s pretty nasty. But ⁓ at the same time, caregivers count and and disability it affects their lives deeply as well. The thing the stigma, the isolation, the
the lack of support affects your life as a caregiver, ⁓ significantly, ⁓ in addition to your your your child or your siblings. So, so I think it kind of gives us a sense of solidarity that improving the lives ⁓ for disabled people also improve the lives of for caregivers. they’re actually really like the idea of the the doula society, which Aba Kate talks about. We need to care for caregivers so they can best care for ⁓
for their objects of care, their their their children, their their siblings. So so yeah, I think it’s ⁓ I think that needs to be part of the conversation. and so yeah, when I teach my discipline studies class, I t I’m teaching it right now intra discipline studies, we we do spend a week on caregiving and and also thinking about intellectual disability and and ⁓ you know what what you do when when someone maybe has communication disability and they can’t
represent their own experience and they need someone to talk for them and just the ethical complication ⁓ of that. ⁓ and so so yeah, I think there’s there’s a a big difference between speaking for versus speaking with or speaking, knowing that you might get it wrong. I think it’s also being open to not ⁓ you know, get you that that you could misrepresent. And I think that’s kind of what my novel is also about.
Amy Julia Becker (28:19)
Yes.
Brian Trapp (28:28)
is the complication of that and but also I think the way that my brother found ways to communicate ⁓ interdependently ⁓ using his twelve words, the creative ways he he communicated. And so part of my ⁓ experience is is that active translation of of trying to think what is my brother trying to say, but knowing I could also get him wrong. So
Amy Julia Becker (28:50)
Yeah, this is a great kind of segue into talking a little bit about range of motion, ⁓ because you’re really ⁓ telling the story of ⁓ in a fictionalized version, right, of ⁓ your relationship with your brother, but again, in a fictionalized ⁓ form, which includes a lot of exactly that, that sense of like, I think I know what you mean, even if everybody else doesn’t.
And feeling like again, there’s like some affirmation of that coming to you from your brother, like or coming to Michael from Sal, as it as they are ⁓ in the book. And so I’m I’m curious from your personal experience, just what how much Danny gave you, like how much feedback you got when you were acting as translator.
Brian Trapp (29:36)
Yeah, I think I mean, sometimes I would say he wants this and he would go, ⁓ you know, he could always he he had a yes and he had a no, right? And so I really feel for people that maybe don’t have that yes or no, ⁓ because he could always push back that way. Or I could always ask him, Do you want this or that? Or do you mean this or that? And he could confirm or not say anything and then I’m like, come on, tell me.
⁓ and so it it gave him a bit of power also, I feel like, when he was whole dancers, ⁓ and that kind of thing. But yeah, I think it the the translation was really important, but it’s like, you know, I I’m I’m doing the best I can. I was also very aware of like maybe I’m using him for my own ne own wants. Like with his computer, there’s a scene in the novel where Michael programs his own voice onto the unwanted communication device, which is definitely something I did in real life, to my brother’s Dyno Box.
And ⁓ we I I I program one thing. He had an aide who had a weird haircut and I said ⁓ into the computer ⁓ and he would click on the options, it’d whisper into his ear and he would click on it with a switch. I said, Hey, nice haircut, what’d you get in a fight with a weed whacker? And I just recorded it and then apparently I got a phone call. my mom called and she’s What did you put on his device? Aid’s crying. And I’m like, I just said wouldn’t you get a fight with the weed whacker? And sh and I’m like I’m like you’re in trouble. I’m like
He said it. Why am I getting in trouble? He’s the one who clicked it. I just gave him the option to do that. ⁓ but I I definitely like I definitely wanted people to see my brother as funny. ⁓ so I programmed, I think that’s also the important thing is my brother had a great sense of humor. He had a great comic spirit that I think is reflected in my character, Sal, as well. ⁓ and so that was kind of his proof of of life or humanity for a lot of people. They wouldn’t
really give them the time of day until he would laugh at something they would think he wouldn’t get, or ⁓ you know, someone making a mistake. He would all love to laugh at human folly and error. So yeah, so I think that’s also like translating his sense of humor to people and getting him getting them to see him as a a complicated human being, even if it looks different than than how they think people should act.
Amy Julia Becker (31:52)
Yeah, and I I do I really have loved ⁓ getting to know Michael and Sal through reading this book. And I’m curious what prompted you to write this as a novel rather than a memoir? Like what was the what what did that give you in possibilities?
Brian Trapp (32:06)
Yeah. ⁓ well then the memoirs next, so I’m working on that. ⁓ actually, ⁓ ’cause I think the publishing industry wants that actually. So but the novel it first started as a novel about the camp, Camp Cheerful, where I mean my brother went for five years and one of my ⁓ campers there really I really kind of identified like had a lot of
Amy Julia Becker (32:11)
All right.
Brian Trapp (32:31)
Transparence with between him and my brother. He really reminded me of my brother that he could say a bit more words. He could drive a power chair. My brother could never drive a power chair. ⁓ and his his family came to visit him at the camp and then they left and he was really depressed. And we had a camp lu out and literally like what happened in the novel. I turn my back for like fifteen minutes. He’s dry he escapes camp in his power chair and goes on to the nearby highway, ⁓ the very busy road. He’s driving down the road and
he’s discovered and and brought back safely, but it was almost got fired. It was a very traumatic thing because I felt like I had almost let my brother down in a way that I had let him almost hurt himself. ⁓ but I also thought, wow, that is a punk rock thing to do. Like that is such a dramatic action. and so I really thought, wow, what if someone like my brother does that in a in a novel, right? So I it couldn’t be memoir because my brother never did that.
⁓ and so it and also it was kind of a way to write about the camp and in revision the camp became a a a bit smaller part than originally I’d thought. So but yeah, I also really like fiction. I feel like fiction lets you get at emotional truth in a deeper way, dramatic truth in a deeper way. So I could write like it it was like I knew what my brother was thinking, but in the novel I can actually show Michael feeling hearing Sal with his ears in the early parts.
that sort of telepathic connection that I felt like I had with my brother in a in a mo in an emotional way. ⁓ fiction can let me record dramatize that more fully than having to kind of stay in the within the bounds of literal reality. Yeah. ⁓ even though I’m still gonna I’m gonna write about that too ⁓ in the memoir next. ⁓ but that’s the memoir is also a bit more about our later life, ⁓ after after we were eighteen and and that kind of thing. So ⁓
But yeah, I think it i there’s some some things that fiction lets you get at that might might be and also like dr get into the head of Hannah and Gabe, the parents who are not my parents literally, but ⁓ my my mom has a highlighter and she’s highlighting all the true things in the novel. ⁓ yeah. And she she doesn’t think Hannah is her, even though there’s a lot of similar experiences that that she underwent and same thing for for my dad. ⁓
So my dad is literally a neuroscientist, ⁓ at the Cleveland Clinic. So it was interesting to kind of kind of start with them as all like literally fictional characters for them, but then as the novel went on, ten years I wrote this thing, so they sort of they sort of mutated into their own people and I also, you know, brought in I think fiction also lets you get at the community story more so. So I I put in other things I had heard about other families experiencing and not just literally my parents.
Yeah. So so yeah, I think fiction can can get at truth in a different way that I find exciting.
Amy Julia Becker (35:30)
There’s one scene that I found really poignant ⁓ and also again kind of thought provoking. This is Michael, the main character who’s kind of your ⁓ you know, s stand-in doppelganger. ⁓ and so in this, Michael mentions that Sal’s intelligence test said that he was six months to six years.
Brian Trapp (35:42)
Doppelganger, Doppelganger.
Amy Julia Becker (35:52)
And then Michael goes on to say all the different ages that Sal could be compared to. So he has the feeding skills of a toddler, the humor of a middle school boy, the patience of an elderly person. it’s a really beautiful passage, actually. I really, really approach appreciated the way you put it. But it also struck me of just again, we use age comparisons as this other sort of like analogy for who a person is. And one of the things this scene is describing is like the problems.
of those types of comparisons. Like the problems of saying that a, I don’t know, maybe Sal might be 13 at this time and to say six months to six years, like, ⁓ yeah, there there’s perhaps some obvious problems with that. But I just wanted to ask you to speak a little bit about this concept of like mental age that can get placed on particularly people with intellectual disabilities. What’s the problem? Is there anything helpful? Like what what’s going on with those types of comparisons, do you think?
Brian Trapp (36:48)
Yeah, I mean it’s very much a deficit thinking ⁓ type of thing. And I mean I I I really for my memoir I’m going through all my brother’s files and I’m just reading his psychological exams, which are very like he can’t pass those tests. but I think almost as like a bone they threw to my mom, they’re listing him at like eight towards the end when he’s twenty five. ⁓ so like some of his kind of capacity is like six to eight. ⁓ but it’s just like he is a twenty five year old
young man, he died at twenty eight. So yeah, you know, it’s ⁓ the human experience is much more complex than that. And I think you know, social skills he was definitely, you know, twenty eight, th forty, fifty, whatever. Like the way he made people feel, like my dad would say he had more social skills than half the doctors that took care of him. Like it’s ⁓ but it just like reduces it like confines someone into like a a little box that is kind of just diminishing. ⁓
And so yeah, it’s very much deficit thinking, whereas, yeah, my brother
had a had definitely age appropriate sense of humor. ⁓ but yeah, it it really confines people, I think, to ⁓ just a deficit way of thinking when yeah, he’s he’s a complex human being who was literally twenty eight years old when he he passed away. So I think it I think yeah I mean I I remember when I was like and Michael, I think is thirteen, fourteen, I’m thinking he’s not two, what what why are you are you listing him as that? Like it’s just
kind of humili like little humiliations you face as a family and a especially disabled person where, you know, the system’s supposed to help you and it’s just kind of making you feel diminished. So
Amy Julia Becker (38:33)
Yeah, I I so appreciate it. I remember this was a long time ago, early on in Penny’s life, but reading something that a a sibling actually had written a woman about her brother, and she said he is like an eight-year-old, or she did some sort of eight-year-old comparison, and then she described his day as someone who like gets up and goes and gets the bus and goes to work. And I was like, ⁓ like these things don’t actually make any sense. There’s no eight-year-old who is like
getting out of bed and going about a routine in which he then gets on the bus and goes to work. Like that’s that’s a that’s what adults do. And it was a it was just a and that wasn’t I mean the she was not actually making a point. She was ⁓ you know she was using the concept of mental age in order to try to, I think, ⁓ give the readers of this essay some sense of like he doesn’t have the intellectual capacity you would expect of someone who’s getting on a bus and going to work. But I just read it kind of in the inverse way where I’m like
But he’s getting on a bus and going to work like this is an adult. Like this is a grown man we’re talking about here. So anyway, I just appreciated the way you addressed that. And I think it’s ⁓ true throughout the novel that there is a sense of humor and love and exasperation and jealousy and honesty and ⁓ frustration and just r I mean, deep affection and care between Sal and Michael as brothers. And there’s no I don’t know, I think that’s the thing I was trying to get at.
⁓ as we kind of come to a close here, there’s not an analogy that can convey the full relationality, but a novel actually can at least come close to that. And I’m really grateful that you have given us that. ⁓ and so I thought maybe I’d ask just as we ⁓ finish this conversation, what the
No, relational reality that you would want the outside world to understand about disability within families that, you know, th they wouldn’t understand without an experience of of real relationship.
Brian Trapp (40:37)
Yeah, I think people with disabilities are f full human beings. Like they’re not tragedies, ⁓ even though some things are very difficult. you know, they they’re not inspirations necessarily. Like, ⁓ they’re they’re people and some of them are jerks, some of them are awesome, some of them are the variety of human beings you you find, but I think, you know, there’s there’s things that ⁓ I think make disability families unique.
the adaptation, the ⁓ creativity for for having people t participate in the family. ⁓ there’s joy there. There’s ⁓ yeah, there’s there’s the same kind of sibling rivalry that are in any other families. ⁓ and yeah, I think we we need a language to kind of represent that complexity rather than kind of just bowing to the tragic model of disability or the the sentimental model of disability. That that doesn’t help us see the full
the full picture and and that’s why I think I really do talk about my brother’s sense of humor a lot because that was really his ⁓ his spirit. he he wasn’t he didn’t think his life was tragic. And I think that’s the one thing that my I had a I have a a good friend who in high school, I middle school, he ⁓ he was around my family a lot and he had a a dis a a kid with autism and he immediately thought of my family and he thought that was not a house of sadness.
And he he could imagine a life with his son going forward and I think that’s that’s what people also need to take away is it it it it’s often not a house of sadness. It’s it’s yeah just like anybody else. So ⁓ so yeah, I think that’s that’s what I would take away.
Amy Julia Becker (42:22)
I love that. Thank you so much. ⁓ because I do think we need these stories. I mean, it’s the title of this podcast that help us to reimagine ⁓ what a future that we didn’t expect can hold and not in an overly sentimental or tragic way, but it just in that fully realized human way. but I love those words. That was not a house of sadness. ⁓ and in fact what you’ve described is a house with a lot of laughter. ⁓ which again is not to diminish the hard pieces of it. So
Thank you for giving us that and ⁓ thank you for the writing you’ve done and we look forward to your memoir.
Brian Trapp (42:57)
Okay, thank you so much, Anna Julie. I really appreciate your time.
Amy Julia Becker (43:04)
Thanks as always for listening to this episode of Reimagining the Good Life. We’re coming close to the end of this season. I’ve got a couple more great interviews for you. I hope you’ll look forward to a conversation with Chris Wyman in particular, who is a professor at Yale Divinity School, a poet, and a really thoughtful conversation partner when it comes to all sorts of questions around God and faith and doubt and suffering ⁓ and living a good life.
If any of these conversations resonate with you, please do consider subscribing to my Reimagining the Good Life Substack newsletter. It extends this same work and you get it all year round, whereas the podcast only comes out episodically. ⁓ And over there we also are challenging assumptions about what makes life good, proclaiming belovedness and envisioning, and hoping to help build a world of belonging where everyone matters. So again, you’ll find the link to that in the show notes.
It is always really helpful for you to tell other people about this show. So you can do that by sending a direct text and sharing it with them. You can follow, you can rate it. You can write an official review, which I know is like so hard to do because it means clicking buttons and going off of this platform and onto another one and all those things. But nevertheless, it really helps the algorithm to find new ⁓ people who might want to ⁓ hear about what we’re doing over here. So thank you for being here.
Thank you also to Jay Canson for editing this episode, to Amber Beery, my director of content for producing the show. And as we go from this place today, let’s all keep reimagining the good life together.
