Diversability Amplified Podcast: Making Space for Grief and Progress with David Younger [S2:E13]
A gradient blue background with airwaves takes up the top half. Dark blue text "Diversability Season 2". To the left is a cutout photo of David. Centered is a blue box with text "New Episode". On the bottom half is a light blue background with audio control mockup. Centered text "S2:E13 Making Space for Grief and Progress with David Younger"
In today’s episode, host Erin Tatum is joined by psychologist David Younger. They discuss breaking generational cycles of shame around hereditary disability, as well as broader existential questions faced by the disability movement, in particular society’s inextricable intertwining of disability with mortality and therefore fear. Ultimately, we must prioritize gently carrying our own emotions rather than catering to those around us.
David Younger is a husband, father, and psychologist living with a disability. He writes from the inside of loss—about grief, tenderness, and what it means to keep living when life breaks and reshapes you.
Show Notes
Understanding Ableism and Disability
Understanding Disability Experiences
Dynamic Adaptation to Disability Challenges
Challenges of Disabled Accessibility
Overcoming Ableism and Accessibility Challenges
Addressing Ableism and Aging
Journey with Muscular Dystrophy
Summary
Quick recap
In this meeting, Erin and David Younger, a psychologist with fascioscapular humeral muscular dystrophy, discussed navigating loss and grief while addressing unconscious and internalized ableism. They explored the challenges of adapting to disability, including societal marginalization, lack of accessibility, and the internalization of ableism, while emphasizing the importance of self-compassion and open communication. The conversation highlighted the need for societal awareness and accommodations, as well as the value of expressing oneself rather than managing others' reactions, with both speakers agreeing on the importance of addressing ableism and making space for vulnerability and grief.
Understanding Ableism and Disability
Erin interviews David Younger, a psychologist from Austin, Texas, who has fascioscapular humeral muscular dystrophy. David discusses his work on navigating loss and grief, focusing on unconscious ableism and internalized ableism. He emphasizes the importance of addressing the root causes of ableism, including fear of mortality and fear of saying or doing the wrong thing around disabled individuals. David also notes that anyone can potentially develop a disability, making disability rights unique in that sense.
Understanding Disability Experiences
Erin shared her personal experience with disability, highlighting the unpredictability of becoming disabled at any time in life, as illustrated by her mother's recent ALS diagnosis. David acknowledged the unique nature of each individual's experience with disability, emphasizing the challenges of adapting to continuous loss and the need to navigate new plateaus. Both speakers underscored the importance of recognizing the diversity of experiences within the disability community.
Dynamic Adaptation to Disability Challenges
David and Erin discussed the challenges of adapting to disability, emphasizing that it is a dynamic and ongoing process rather than a static state of acceptance. David shared his personal experiences with mindfulness and meditation, highlighting the importance of living in the present moment while acknowledging the uncertainty of future physical limitations. They both agreed that adapting to disability involves daily adjustments and is not solely about reconciling oneself to a new reality, as non-disabled people might assume. David also touched on the issue of being marginalized and othered by society, which adds to the struggle of living with a disability.
Challenges of Disable Accessibility
Erin and David discussed the challenges faced by disabled individuals, highlighting how society often fails to accommodate their needs and perpetuates their marginalization. Erin shared her experience of being viewed through a lens of tragedy, while David recounted his struggle to find accessible travel accommodations, noting the unwillingness of hotels to make simple adjustments. Both emphasized the need for societal awareness and willingness to accommodate, underscoring the impact of institutional neglect on the lives of disabled individuals.
Overcoming Ableism and Accessibility Challenges
David and Erin discussed the challenges faced by people with disabilities, including the lack of accessibility in public spaces and the internalization of ableism. They highlighted the need for common sense accommodations, such as accessible tables in restaurants, and the value of policy work and awareness efforts. David expressed interest in focusing on the consequences of internalizing ableism, including shame, self-hatred, and isolation. Erin and David agreed that overcoming ableism requires challenging the illusion of immortality and embracing healthy aging.
Addressing Ableism and Aging
Erin and David discussed the challenges of addressing ableism and the collective avoidance of mortality and aging in society. They explored how younger generations are often unresponsive to these issues, making it difficult to foster compassion among older generations. Erin suggested that more real-life interactions could help people become more emotionally attuned to the experiences of others, while David shared his experience of using writing to open up about his lived experiences with family and friends. Both emphasized the importance of expressing oneself rather than managing others' reactions, highlighting the potential for depression when one is constantly managing others' perceptions and emotions.
Journey with Muscular Dystrophy
David shared his personal journey with muscular dystrophy, discussing how he initially hid his disability due to shame but eventually sought treatment worldwide. He described his progress in accepting his condition and the importance of self-compassion in managing mental health. David also discussed his experiences as a father, noting how his children have had different reactions to his disability, and emphasized the value of open communication about difficult topics. Erin and David agreed on the challenges of addressing ableism and the importance of making space for vulnerability and grief. They expressed gratitude for the meaningful conversation and agreed to stay in touch.
Tune in to the entire podcast on the Diversability YouTube channel. (Season 2 Episode 13 is available here.)
Transcript
11:59:02 Yeah. Alright, well… So, basically, to tell you what I'm gonna do is, I'm… If it's okay with you, I'm gonna do a formal… Podcast intro now, which is where the.
11:59:17 recording will start, and I'll… Introduce myself, and then I'll have you introduce yourself.
11:59:23 Sounds great.
11:59:29 reversibility Amplified Podcast? My name is. Guaranteed him, my pronouns are she and her.
11:59:35 I'm a white woman with glasses and… And today, on the podcast, we're.
11:59:42 To be with David Younger! David, please introduce yourself.
11:59:46 Hi, everyone. My name is David Younger. Um, let's see, I'm a 49-year-old.
11:59:56 male, and I'm a psychologist, and live in Austin, Texas, with my family.
12:00:02 And I have a type of muscular dystrophy called fascioscapular humeral.
12:00:08 Muscular dystrophy, which I was born with, and… My mother had it, my grandmother, my great-grandfather.
12:00:16 Um, and it is a degenerative, progressive. condition that affects the skeletal muscles and.
12:00:26 most of my body.
12:00:31 David, I know a lot of your work centers around navigating.
12:00:36 Grief and loss, as well as parenting with a disability. Did you want to talk.
12:00:40 more about that.
12:00:43 Yeah, sure. Um… Let's see… I mean, I think what's closest to my heart.
12:00:50 Right now, um, and what feels… the most important to me.
12:00:56 is the, uh, the piece about. navigating loss and grief.
12:01:03 And… and working in… with… with the shadow, I'm, uh… Working with the shadow and… with what's unconscious, um… both in terms of my work with individuals in my practice, but also in terms of.
12:01:20 the impact on ableism and internalized. ableism. Um… So… basically, I think… there's so much work that's being done that's top-down on.
12:01:38 changing behaviors, changing language, changing… policy, which is incredibly important.
12:01:45 Uh, and addressing microaggressions and things, you know. things that Tiffany talks about.
12:01:52 in the… in the manifesto. And… that's the kind of, you know, that kind of disability rights advocacy work is… extremely important.
12:02:06 And I come at it from a different perspective, and focus.
12:02:11 Which is… what… what is perpetuating.
12:02:18 the ableism to begin with. What… Um, what are we internalizing?
12:02:23 And… what is keeping people.
12:02:30 Um, sort of functioning in this way. Where… we feel so isolated.
12:02:38 And, um, marginalized. you know, why that's happening.
12:02:43 Um, and I… I think that… we pose an existential threat.
12:02:49 to people, I think… people ultimately are terrified of their own mortality.
12:02:55 And I think people are terrified of their bodies breaking down.
12:02:59 And the thing about having… and, you know, I'm globalizing, I'm generalizing right now, but the thing about having.
12:03:06 a disability is that anyone can join this club at any time.
12:03:10 And that's what makes. us and our… you know, specific ism, kind of.
12:03:17 quite unique, uh, if you, you know, compare it to… say, LGBTQ, or, you know, Black and Brown individuals, it's that, you know, um.
12:03:28 It's something that anyone can join at any time, and it's not a club.
12:03:33 that people want to join. Um, and I think people are… I… tell me if I'm going on for too long, but… Um.
12:03:44 I think people are afraid of saying the wrong thing. I think there's an element around that, so, you know, I was just in Seattle.
12:03:52 for a weekend visiting friends, and my friend. who's not disabled, was noticing how people.
12:03:59 reacted to me in my wheelchair. And he's like, wow, people are so deferential.
12:04:04 you know, they're… you know, and I think there's, um… Again, I'm generalizing.
12:04:10 But I think there's this fear of saying and doing the wrong thing.
12:04:15 that can really create the distancing. It can create distance.
12:04:20 So there's that, and then there's the… We can only know what we're conscious of.
12:04:26 I think there's so much unconscious fear. that perpetuates ableism.
12:04:32 And it's something that we… end up sitting with… and internalizing.
12:04:40 in a deep, sort of, undigested. way.
12:04:48 First of all, thank you for being vulnerable enough.
12:04:52 To share your lived experience with us, and I think of… What you said will resonate with the experience of disability and ableism with a lot of our.
12:05:00 Listeners, which is, like you said, people don't like to think about it, but the only.
12:05:06 things separating any given person from. Disability is time. It's… It's the one minority that you could join at any point in your life, so… No matter how long you've been able-bodied, or what kind of luck you…
12:05:22 think you have, or, you know, what kind of… Family history, or what kind of health.
12:05:27 You could still join at any time just based on random.
12:05:31 Circ… circumstance, and I feel… that right now as well, personally, because.
12:05:38 I have cerebral palsy. Um, but my mom has been my caregiver.
12:05:43 My whole life, and this past… May, she was diagnosed with ALS, so it just goes to show… Anyone can become… Disabled at any time, and it doesn't matter your.
12:05:55 Proximity or lack of proximity to the community, or what kind of… background that you have, disability's kind of the great morbid equalizer that no one wants to… think about.
12:06:07 100%. Yeah, I'm… I'm really sorry to hear that about your mom.
12:06:15 Thank you! Yeah, it's definitely been a different experience of.
12:06:19 disability, because personally, because cerebral palsy is not degenerative.
12:06:25 I had to relate to disability personally in that way.
12:06:29 Um, but since ALS is obviously very degenerative and very fast.
12:06:34 It's definitely a different way of conceptualizing. disability that I've had before in my previous 34 years.
12:06:42 Yeah. Absolutely, and what you're saying, I think, is also so important.
12:06:47 It's like, we're talking about disability as though my experience with disability is the same as your experience with disability, is the same.
12:06:56 as your mother's experience with disability, and… obviously, they're not, and… I think I would be a completely different person.
12:07:05 if, for example. I had, like, I discovered I had this… I have this… condition when I'm a kid.
12:07:14 And it's… static. It's not, you know, it's not progressive.
12:07:19 Because then you adapt. You can get used to, but I'm… I've constantly had to… and this is not a comparing thing, it's more just pointing out.
12:07:28 you know, that everyone's subjective experience and lived experience, even with the same condition.
12:07:35 is so unique and different. And for me.
12:07:40 the biggest, like, one of the biggest challenges that I've had.
12:07:43 is navigating loss, getting used to a new plateau.
12:07:48 like, oh, now I can't do X, Y, and Z.
12:07:51 And then you get used to it, and you learn to adapt.
12:07:55 And then there's more laws. And then you have to get used to more, you know, more laws, and… Um, I feel like that's the… part of it that… you know, creates just more…
12:08:09 desperation, because it's like, you know at some point that, you know, in your lived experience, you're like, well.
12:08:16 there's gonna be even more loss, and what am I gonna lose next?
12:08:21 And you're… that's… to me, it's one of the hardest things.
12:08:26 about living with my… disability.
12:08:32 So, would you say that it's difficult for you.
12:08:36 To appreciate the moment, because you're always kind of experiencing.
12:08:40 That sort of anticipatory grief of the next loss.
12:08:45 Sometimes, it really… that's a great question, and I think it really depends, and.
12:08:51 Um, I'm very into mindfulness and meditation. I trained.
12:08:57 And as a teacher, as well, I've… it's… it's integrated as part of my personal practice and the way that I work with people.
12:09:05 So, when I'm doing well, and I'm able to be… present and right here, knowing that the only moment.
12:09:14 that there ever is, is this exact. moment right now, and if I can… live in this exact moment right now.
12:09:24 I'm okay. Then I'm doing… I feel like I'm, you know, I'm… I'm doing well. When I'm waking up at 3 in the morning.
12:09:34 with just existential anguish, like, you know. when am I not going to be able to get up from my chair?
12:09:42 And I'm gonna need the, you know, to the… support, like, I won't be able to… I already need help.
12:09:49 showering, um… But it's like, when am I gonna lose that ability, which is gonna require even more caretaking and more money, and… less independence, and… you know, less… I'm a very private.
12:10:05 person. My, you know, like, I'm an introvert. I'm a private person.
12:10:12 Uh, I… I… so I wouldn't be choosing.
12:10:17 to have the kind of help that I need.
12:10:20 Um, and I'm grateful that. I have the help that I need.
12:10:26 Um, so it's not… I guess to answer your question.
12:10:30 it's not a static thing, it's dynamic. like, right now, in this very moment, I'm not feeling desperate. I'm not feeling… anguish. That doesn't mean that at 3 in the morning I'm not gonna wake up.
12:10:44 with, you know, this kind of… anguish, and it's, like, about, like, finding this balance and this equanimity.
12:10:53 Which is a moving target, as opposed to. reaching a finite point where it's like, ah, okay.
12:10:59 I'm not afraid anymore, because I know that that's the point.
12:11:03 doesn't exist… for me.
12:11:09 That's so true, because I feel like. Part of what people assume adapting to disability is, is just… Reconciling yourself to… to your new reality, and I feel like what non-disabled people think it is, is kind of…
12:11:25 Accepting that your reality as a disabled. person will never be as good as when you aren't disabled, but I've… But I feel like people fail to account with.
12:11:36 of things that they… it's not… it's just a mindset, and how.
12:11:41 positive or cynical you are. It's a day-by-day, hour-by-hour adjustment. And, you know, every day can be different.
12:11:49 Exactly. Every day can be different, and… Um, yeah, it's… it's not static, and… We're also dealing with, again, so much that's imposed upon us.
12:12:03 you know, we're dealing with environmental. restrictions and limitations, and again, feeling marginalized, and.
12:12:12 I don't think… I mean, part of the struggle, too.
12:12:16 is that… I think for the most part, if I'm gonna generalize.
12:12:21 people have good intentions. They don't want to… marginalize us, but, um, it's also… How much are people.
12:12:33 really making the effort to. see their reflection.
12:12:39 in us, as opposed to see someone who's in other.
12:12:43 This is not going to happen to me. Uh, I would never want to live this way.
12:12:49 pour you, all of these, you know, things where… we're in… All of those statements and those beliefs is implicit in that.
12:12:58 is in othering, like, this will not and cannot happen to me.
12:13:02 Which we know is a fallacy, and… you're living that with… with your mother right now.
12:13:13 that if they just don't look at us enough.
12:13:17 Or if they just refuse to interact with us enough, or refuse to… humanize us, they can keep us compartmentalized away in this… this little box of tragedy that we'll never touch them, or anyone that they.
12:13:31 I know her love, and I… My mom is probably going through that to a certain degree, because.
12:13:37 Her whole life since I've been born, she's been the caregiver, so… People looked at… her tragedy, which is kind of an extension of me.
12:13:47 that disability is sort of approaching my family on a new axis. I tell people, and they're like.
12:13:55 It's gonna be disabled too now! Like, I thought… the disabled one!
12:13:59 Exactly.
12:14:06 visualize of this level of tragedy, because I thought I would.
12:14:09 the tragic one. So, you know, it just goes to show that disability.
12:14:13 always surprising you in the worst ways possible.
12:14:20 Yeah…
12:14:17 Yeah. 100%. It's like… it's like we're Medusa, too. It's like… like, another way to put it is, like, yeah, if you look too hard, like, you're… you'll turn into stone. If, like.
12:14:30 if you look to. if you look too closely… too closely.
12:14:36 then, you know, what's gonna happen? What's gonna come up for you? What's gonna… what's gonna be exposed, um, so the easiest thing to do is look the other way.
12:14:47 Yeah, exactly, and. In that respect, too, it's certainly a self… fulfilling prophecy, because the more people are.
12:14:56 I'm about to look away from us in daily instances, literally not make.
12:15:00 eye contact with us, but more broadly, and on an.
12:15:03 institutional level, do not acknowledge us in policy or cannot acknowledge us in.
12:15:07 Public station, the more that… perpetuates the continued degradation of.
12:15:14 What little humanity we have?
12:15:15 Yeah. I mean, I was just dealing with that in looking so… when I went to Seattle, it was the first time I've traveled in almost 5 years.
12:15:26 And I founded a travel agent who specializes in working with accessibility.
12:15:33 And wanted to, like, rent an adjustable bed for my hotel room, and… Um, and uh, a rollator.
12:15:43 And a recliner chair, a lift recliner chair. And so I started looking at hotels, and it's amazing.
12:15:49 Most hotels, just off the bat, they're like, no, sorry, we can't… accommodate you. And it's not that they can't, they… they're not willing to.
12:15:59 they're not… and what they have to do in order to accommodate me.
12:16:03 Literally, is say, okay, we'll move one or two pieces of furniture out of the room.
12:16:09 to make space for the furniture that you need.
12:16:12 in order to stay in our. hotel. All these hotels have storage spaces.
12:16:20 Um, finally, I find a hotel that was willing to do that. Literally, all they had to do.
12:16:25 was move one small desk out of the corner.
12:16:28 and rearrange some of the furniture in order to.
12:16:32 accommodate. But the lack of… willingness, and the lack of… the lack of awareness, like, no.
12:16:40 We're not willing to make that. accommodation for you.
12:16:44 How are you not going to internalize that? I mean, in terms of, well, what does that mean? Like, I don't live in a world.
12:16:54 that, you know, willing to say, oh, this is what we need to do.
12:16:59 In order to give you a level playing field.
12:17:02 to stay in a freaking hotel. to sleep a night at a hotel.
12:17:09 And also, keep in mind, you're paying them, and they're still not willing to move the furniture.
12:17:16 We're doing you a favor and letting you stay for free.
12:17:19 Or, or, or, yeah, can you please pay for the medical equipment that I need in order to be able to stay in your hotel? No, I'm paying for it myself.
12:17:31 And I truly do feel like that people… disability is automatically, like, an inconvenience tax.
12:17:40 And it's like, oof, it's inconvenient for you in this experience, imagine how inconvenient it is for us to live through it.
12:17:47 Yeah. I mean, another example of that is… just is going to restaurants, and… finding a table that doesn't have a center post.
12:18:00 Uh, you know, so essentially, you can't fit your wheelchair.
12:18:03 under the table, because there's a center post. Uh, how many restaurants have ta- how hard would it be to have one table.
12:18:12 with four corner posts, you know, that, uh… the table, you can fit your wheelchair under.
12:18:18 for a restaurant to have just one. of those tables that… Uh, so that you can go… and eat with dignity.
12:18:29 How hard would that be? But how… how often do you see that?
12:18:37 That reminds me of… This past summer, I was at my friend's bachelorette, and we had a very late reservation at a really fancy restaurant, and we… We had to wait probably about an extra 30 minutes, because they didn't know where they were gonna put my chair, even though.
12:18:52 We told them ahead of time that I was in it. Like, it's so silly!
12:18:58 So many of the things. to accommodate us moving through the real world are just common sense, and yet people still can't… do it.
12:19:06 Yeah. Which is why, like, it's so valuable, the people who are doing the work, the policy work, the… you know, the awareness work.
12:19:17 um, is so valuable. And again, in terms of my interest in my writing and my work, and… And talking about it, navigating loss and grief, it's like, for me, it's like I'm focusing about.
12:19:31 what are the consequences of internalizing. all of this. You know, in terms of the shame, in terms of the self… hatred in terms of the isolation, the depression.
12:19:43 the loneliness, the marginalization. the distorted views that we have of ourselves.
12:19:51 that as an inevitable consequence of. internalizing all of this undigested, undigestible.
12:20:00 material. That's where… that's where… what I'm interested in focusing on.
12:20:08 And I would hope that eventually. Most people would come to realize, as I have.
12:20:16 cater to an ableist mindset, and the more you try to.
12:20:20 fit yourself into a perpetually smaller and more cramped.
12:20:23 Gardner, you're not actually… Helping yourself rise above ableism. You're just dragging everybody else… down with you in your own… In your own enabling of society's disrespect of you.
12:20:41 Absolutely, and not only that. you're perpetuating the illusion.
12:20:46 that you're immortal. You're perpetuating the illusion that you don't live in a body.
12:20:53 that is going to age and fail you in some way.
12:20:56 How is that helpful? So we're living, you know, in this global illusion.
12:21:01 that we're gonna live forever in healthy bodies. And that is something that is going to crash down for every single person.
12:21:12 who's laboring under that illusion, and that's not helpful.
12:21:18 And I don't… I don't know. In online spaces?
12:21:23 busy as you are, but even with the younger.
12:21:25 people, I've noticed it a lot with. Gen Z, too, where it's not even.
12:21:30 indirect ableism, but the interplay between ageism and ableism is… As well, because it seems like everyone.
12:21:38 their 20s, things that you turned into a bag of bones the second you hit… It's like, no, we also need to conceive of.
12:21:46 Aging itself in healthy ways so that we can make.
12:21:50 peace with our body, and not… Just all wander around thinking that, like.
12:21:55 Oh, I… like, there's no point in living socially after I turn… 27, or whatever age you've internalized.
12:22:03 Yeah. No, there's so much overlap there, and so much overlap also in terms of.
12:22:09 how segregated are, you know, the elderly are, you know, shipping them off to.
12:22:15 homes, um, you know, it's like, we… Again, these are… it's another group of people, like, we cannot… look at you because you make me… think about my own… mortality.
12:22:32 Right, and it's… it's essentially… At the baseline, it's, I find you kind of gross and sad, so therefore get out.
12:22:44 All people need to come to the.
12:22:49 physical prime every single day of their life for.
12:22:52 60 years and dropped dead. Like, some increment of aging is going… Tap into everyone, even if you don't become.
12:23:01 to say, well, so part of aging involves, as you were saying, like.
12:23:04 That bodily disconnect and that bodily… breakdown, so we also need to come up with.
12:23:10 softer and more emotional reactions than… I don't want to look at you because it reminds me that I'm gonna die.
12:23:18 Yeah, exactly. But that's what we're up against, I think, in terms of… dealing with the shadows of ableism is… Uh, we're up against, uh.
12:23:29 a collective avoidance of mortality. and aging, and our bodies falling apart.
12:23:37 Like, that's the existential threat. that we're… that we're up against, which is… couldn't be bigger, right?
12:23:46 I… I know, because it's like. something that has… Such a vice grip on all of society, and especially the younger.
12:23:58 people in society who are typically associated with being the biggest engine for change.
12:24:04 Exactly.
12:24:07 Yeah, so if they're not motivated and they're against you.
12:24:11 How are you supposed to sort of massage that compassion?
12:24:15 In… into the ideology of older generations, and. more stereotypically rigid demographics of people.
12:24:23 Yeah. That's the… That's the challenge that we're up against.
12:24:31 And I… I feel. People say that social media contributes.
12:24:38 To a degree, which I definitely agree with in perpetuating the illusion that everybody.
12:24:43 to stay 23 forever. But also, I feel as though people just need to interact with.
12:24:49 people in their real lives to be. more emotionally attuned with even what?
12:24:55 people in their own families are going through. Like, I don't know if you've.
12:24:59 experienced this, but, you know. My extended family kind.
12:25:03 I'm disabled, but that's… That's it. Like, they've never really… I mean, and I'm not saying that they're obligated to, but they've… It interacted with me, or sort of… Helped my parent with the experience at all, because it's…
12:25:18 conceptualized as a singular tragedy.
12:25:22 Yes, the, uh, I feel like, um… part of the thing that's been cathartic for me about my writing, because I've been very open and… vulnerable about my lived experience.
12:25:36 Um, and some of the people who are reading my writing are… family and friends who are learning things about me.
12:25:43 that they've never… known. Because even with people who are invested in you.
12:25:49 who you have a relationship with. there are still these barriers, right? And there's still this sort of… two-dimensional… you live with a disability.
12:26:00 But, like you said, there's not this going beyond that into.
12:26:04 you know, the third… the third dimension of it. Let me… Let me touch you and understand your lived experience, your subjective experience, and… connect with you in that way.
12:26:20 Which, again, can feel so… isolating, and… you know, for me, for so many years, it was like, well.
12:26:29 people don't really want to know that, so I just have to keep it inside.
12:26:33 and make other people feel comfortable. around me, which is so toxic, and it's just like a… You know, you want to write a recipe for depression?
12:26:44 that's a, you know, that's a recipe for. depression, which I've had plenty of, like, plenty of experience, years of… clinical depression, and I'm not depressed now.
12:26:55 And I think it's… even though I'm physically. more affected than I've ever been.
12:27:01 The reason I'm not depressed now is because I'm expressing myself more, and I'm not… I'm not managing other people's consumption of my experience anymore.
12:27:12 If you're uncomfortable, you're uncomfortable. It's not my job to make you feel comfortable.
12:27:19 Right, and I would also… Not to say that it's not your job to manage.
12:27:25 people's expectations or reactions. to you or your diagnosis, or what you… go through on a daily basis, because.
12:27:34 feel as people with disabilities who often. need to interact. So, so much more intimately with.
12:27:42 multiple people, as opposed to… Other people who might just be interacting with an intimate partner, or, you know.
12:27:49 Or what have you… what have you, we… to sort of manage, like, a galaxy of.
12:27:57 the emotions of all these people who are around us and have to interact with us, but… step back and think about it, it's not… It's not really our job to… to do that, and we can only be responsible for our own emotions and reactions.
12:28:12 Yeah, I think about, like, how exhausting that is to think, you know, to feel.
12:28:18 like, you do have to manage, and not just manage, like.
12:28:21 digest and help people process. uh, you know, all around you.
12:28:26 How would that not just be totally… you know, obliterating, exhausting.
12:28:33 And again, it's like… you know, a recipe for.
12:28:37 depression.
12:28:42 We've spoken a lot about your experiences… Clinical depression, but overall.
12:28:47 Would you say, um, your disability has influenced your mental health and vice versa, and how do you… sort of balance or acknowledge those two things simultaneously.
12:29:00 Hmm, um… Yeah, so I, I mean, I've… ever since, sort of, starting college.
12:29:10 uh… I dealt with… depression, um… And so… for me personally, the first 25 years of my life.
12:29:21 if I had to sort of, uh… distill it into how I related with my disability. I didn't talk about it.
12:29:30 Um, my mother, I witnessed my mother. who had the same type of muscular dystrophy.
12:29:36 getting worse and worse and living with chronic pain.
12:29:40 I didn't talk with my parents about it. I didn't tell my teachers about it.
12:29:45 I hid it from myself and from everyone around me.
12:29:49 And what came from that? a tremendous amount of shame.
12:29:54 Um, then… starting in college, I started sharing with.
12:30:00 some of my closest friends. And a kind of coming out of the closet with living with a disability.
12:30:07 And I went into a new stage. of a desperate search.
12:30:13 for treatments, because there was no… there's still NIDs. There are experimental things happening, but there's no treatment.
12:30:22 or cure. So, literally traveling the world, like, spending time in southern India with a doctor in southern India.
12:30:28 going to Thailand, going to Sri Lanka, going to San Francisco.
12:30:33 searching desperately for how do I stop this? ticking time bomb.
12:30:39 Um, that's happening in my body. And again, a lot of depression.
12:30:44 Um, because there was so much fear. and anxiety. And I started going to therapy in my early 20s, um.
12:30:53 And I'm still in therapy. I'm an individual therapy, I'm in couples… we do couples therapy, my wife and I.
12:31:00 I'm in group therapy. Um, and I have a meditation.
12:31:05 practice, but it's only… in the past decade.
12:31:10 that… and I'm 49. that I've moved into a place of more and more.
12:31:18 acceptance, and being with… making space for… the grief, the loss, the pain.
12:31:27 Uh, all this stuff that… has been unprocessed.
12:31:31 and internalized? that, and compartmentalize, that I just never… made space for… And that's what's been the most healing for me.
12:31:43 uh, is softening. to my experience and the challenges, and the loss, and the grief.
12:31:50 and the pain, and the different iterations of… who I was, and my struggles, and having compassion.
12:31:58 for… the younger version of myself that felt like I needed to hide this from myself and the world.
12:32:06 As opposed to judging him, and… Um, approaching him with a more punitive lens, which I've done.
12:32:14 As well. So, it's really self-compassion, like, genuine self-compassion.
12:32:21 Um, that has… made me feel more open.
12:32:25 more accessible to my own experience. more accessible to my vulnerability.
12:32:33 and a desire to… put myself out there more, like, with the writing, and… with the work I'm doing now, with our conversation.
12:32:42 Like, I wouldn't have done this had this conversation.
12:32:46 with you, and had the opportunity. to sit here and connect with you the way that we are.
12:32:53 10, 15 years ago, it would have been too threatening for me.
12:32:56 So, being able to talk, like, I have a desire to talk about.
12:33:00 my, you know, my lived experience. Because it's cathartic and therapeutic for me, but also because.
12:33:08 I wanna… I genuinely want to… normalize it, and… help other people feel less alone.
12:33:16 Because I know that we all have our subjective.
12:33:21 experiences, which… are different, but there are also so many shared experiences we have.
12:33:27 living with, you know, a disability, a chronic illness, terminal illness.
12:33:32 whatever it is.
12:33:37 Right, and I think the more… First of all, thank you for sharing that to me… with me, and it's very humbling to hear.
12:33:47 progressed even… even with. 15 years, because I know the.
12:33:54 shame to pride pipeline can be a very difficult road.
12:33:57 For many people with disabilities, so the fact that.
12:34:01 Now, you kind of seem more… The other side of it is remarkable, especially in the stew of ableism that we're steeped in every single day.
12:34:10 But I also think that once people realize they.
12:34:15 more in common with us than they think. And chronic illness and disability isn't… Something to be feared, that's when I think the gateway to that level of.
12:34:26 connection will really be fully opened up.
12:34:28 Yeah. 100%. The question is, uh… again, I mean, we talked earlier about the barriers to that.
12:34:39 gateway… how, how… How optimistic are you?
12:34:44 about those barriers or that gateway. being opened up, what, you know, do you agree that.
12:34:51 like, to me, I think, like, the biggest gate that's in the way.
12:34:56 is the… is the existential threat that. uh, disability… And, uh, poses.
12:35:05 How do you feel about that?
12:35:08 I agree, and I think that I have. the luxury of kind of being a millennial who witnesses.
12:35:18 Gen Z align! I'm very encouraged by Gen Z's openness and the way they kind of.
12:35:24 interact with disability, it gives me a lot of.
12:35:26 Hope for the future, but at the same time.
12:35:31 And I know our lived experiences are totally… totally different, but I've… this body for 34 years, you could argue.
12:35:39 I've had consciousness for maybe about 30… 30 of them, and… So simultaneously, through that experience.
12:35:47 people's reactions and prejudices and biases? have been more or less the same.
12:35:53 With minimal cresting throughout different phases. So, even though the optimist in me wants to.
12:36:00 wants to be a very positive, I think… Like, what can a small group of people.
12:36:06 Do you against the existential… Existential dread that humanity has against.
12:36:11 Death, if that's the linchpin in our collective dehumanization. Like, it… it just seems like.
12:36:17 It's like a really steep uphill battle, and even though I'm excited.
12:36:22 The amount of progressive voices that we… And certainly, the variety and depth of those.
12:36:29 prospective voices, I still know that humans are humans, and we all have the same… tendencies and vices at the end of… the day, so I do have moments where I lay awake at night, and I think.
12:36:40 Where can we really get if what we're… Up against is, like, a central tenet of human psychology for all of.
12:36:48 are billions of years of existence.
12:36:50 Yeah, that's… that's it, yeah. I… I couldn't agree more. I mean, that… That's such a… an eloquent way of… putting it. I completely agree.
12:37:03 To put it more simply. want to believe in my own power?
12:37:08 and your own power, and all of our power collectively.
12:37:11 But I just know people, and I know. non-disabled pupil, and frankly, way less eloquently, they're kind of shitty.
12:37:21 to, like, be kind of a jerk, so, like.
12:37:26 counterbalance that on a society-wide scale.
12:37:30 Exactly. And also, you know, it's interesting, like, um, I… I co-started, co-led a… mental health and wellness group.
12:37:42 Uh, online for people with the same kind of muscular dystrophy that I have.
12:37:47 And I think I was pretty naive, like, hoping and expecting that.
12:37:52 all the people who were gonna join were gonna want to… kind of dive into the depths with me, and, you know, really explore these issues.
12:38:04 And it was incredible how… much resistance there was. People didn't want to go there.
12:38:11 They just wanted to skim the surface, and… to, uh, you know, have more just small talk and connection, which is… Which is valuable and beautiful, but the explicit purpose.
12:38:22 of this group was… mental health and wellness, and yes, connection.
12:38:28 and community, obviously. there are integral… components and parts of mental health and wellness.
12:38:36 But it was really discouraging. You know, it doesn't… just because you even have the same.
12:38:43 condition, and… you literally have… you can… you can generalize a lot of the physical.
12:38:51 challenges, even amongst that. community… you cannot generalize what ones.
12:38:59 internal lived experience. is.
12:39:08 trying to empathize more with their experience and their perspective. It's like.
12:39:13 If you're already struggling in a river, are you gonna opt.
12:39:16 to go into space and tie rocks to your feet!
12:39:19 Like, no! Because you're already struggling!
12:39:27 was more, like. emotionally bullied by the… comfort of community, of people who at least share a surface level.
12:39:37 diagnosis, and I feel like a lot of times.
12:39:38 too, when you're disabled, you internalize the idea that.
12:39:42 If you just don't think about it, or if you just… Don't make a big deal out of it to other people, then your day will be… better than it would have been other… otherwise, so I think it's a shame, because I do…
12:39:54 I do think people are kind of discouraged and shamed away from acknowledging… acknowledging those deeper.
12:40:01 feelings in the more fraught crises of consciousness that they're experiencing.
12:40:06 Yes, 100%.
12:40:09 Yeah, and that also speaks to what you said before, which is… exact same diagnosis. Everyone's experience of every single day is completely different.
12:40:20 Yeah.
12:40:22 So, in that way, having a disability can. feel very isolating because.
12:40:27 Even when you're in a community of people who are exactly.
12:40:30 quote-unquote, like you, you can still feel worlds apart.
12:40:34 In terms of what you're feeling and… interpreting and processing every day.
12:40:34 Yeah.
12:40:40 Yeah, that's the way I felt after a year of leading this group. I felt discouraged, I felt… Um, I felt more isolated.
12:40:50 And your perspective is… it's true. It's like, I think people were really appreciating having a place.
12:40:57 Where we've got this shared diagnosis, and can we be together and make jokes, and… talk about our, you know, day-to-day lives, and there's value in that, and… for me, and I think part of it is also being a psychologist, is that.
12:41:12 I spend so much of my time going deep with people.
12:41:16 That it's like, you know, I… having… small talk. See, I have an aversion to that.
12:41:25 Um, and I do think it's like a… you know, it's a symptom, and it's… of being a therapist is, like, you get used to relating in a certain way.
12:41:37 And so, relating in these other ways doesn't feel… very satisfying.
12:41:43 And I think being an introvert is that way, too, and like.
12:41:47 I always sort of had this sort of cost-benefit, like, would I rather be by myself? Would I rather be.
12:41:52 reading a book, or, you know, doing my writing, or… engaged with in this, sort of.
12:42:01 uh, social interaction right now.
12:42:09 There always seems to be that kind of. guilt or internal struggle between.
12:42:14 Do… do I give myself a break and let myself rest?
12:42:18 Or do I engage with the hard psychological work of, you know.
12:42:24 My decline in my mortality, or the struggle of perpetuating my daily existence, and… much effort and emotional bandwidth.
12:42:33 Do I really want to give to that before… before I stink myself into another hole of depression, but on the same.
12:42:40 So I do, you think, like, will that benefit the larger community if I share those thoughts?
12:42:45 Yeah. Yeah, it is.
12:42:46 So it's a struggle.
12:42:53 Parenting with a disability as well, did you… Did you want to talk a little bit about the ways that… Disability intersects with.
12:43:02 fatherhood, and how you're… Children are kind of, um, interpreting your diagnosis throughout different phases of life.
12:43:11 Yes, that is a big one. So I have two kids. I've got a 21-year-old boy.
12:43:18 Uh, and I've got an 11-year-old girl. And neither have muscular dystrophy.
12:43:26 Um, and… our daughter is neurodiverse, so she… has a different… kind of disability.
12:43:39 Um, and that… look, the issues I've faced, so… it's almost like they've had two different experiences of me.
12:43:48 Because my son, who's 21. really witnessed… my physical… decline, um, he saw me falling, and… Um, being able to walk, to, you know, not being able to walk, to starting to use a wheelchair.
12:44:06 And then we moved to Austin 10 years ago, and that's when I got my first wheelchair.
12:44:12 And I remember very vividly. Um, going… he was… he… he had a soccer game.
12:44:18 And I showed up at his soccer game in the wheelchair, and it was the first time.
12:44:23 that I had used the wheelchair in public, and.
12:44:29 he could barely look at me. It was so hard for him.
12:44:32 Because he was trying to integrate himself into this new community, and not want… and he was… he was in middle school.
12:44:40 And when you're in middle school, it's like you don't want to be different.
12:44:43 And he was not only seeing, like. me in a wheelchair for the first time.
12:44:49 And how hard that was for him. But it was also being aware of his peers, seeing his father in a wheelchair.
12:44:57 So, it was so hard for me not to internalize that.
12:45:02 and confirm you see, this is shameful. You see? Like, I… it's not okay to just be me and to be proud of.
12:45:11 who I am. So… there was a lot of that.
12:45:16 that I had to… to go through. And, um… with my daughter, it's been different.
12:45:24 my daughter used to… she's a little too big for it now, but she loved sitting on my lap.
12:45:30 in the wheelchair, and calling it her chariot. And saying, when I get married one day.
12:45:36 I want you to chariot me down the aisle.
12:45:39 Um, so… there's been… it's been a different lived experience with her.
12:45:46 But a big challenging… a big challenge for me.
12:45:50 is to make space for my kids. development, and recognizing that they're going to have their own.
12:45:58 evolving experience of living with my disability. and not internalizing it.
12:46:04 and using it as a weapon against myself, and saying, see.
12:46:09 I am defective. C. you know, uh, there is no space for me. So it's been… it's really, like, helped me.
12:46:18 and pushed me to grow, because I want my kids to be able to express themselves.
12:46:24 Regarding my disability, and my son… and I have ongoing.
12:46:30 discussions about it. He'll tell me it's really hard for me to come home and see.
12:46:35 every… I feel like every time I come home, there's something new that you're struggling with.
12:46:40 And that's really hard for me, it's painful for me.
12:46:43 And… is that hard for me to hear? Yes.
12:46:48 But do I cherish the fact that he feels comfortable enough?
12:46:53 to come to me and talk about it. As opposed to what it was like when I was.
12:46:58 His age, not talking about it. not talking about it with my parents.
12:47:04 keeping it all inside. that he's able to do that and cry, and… That we're able to be real with each other, and… make space for the vulnerability.
12:47:17 And the strength that comes with that, because… the amount that I've had to adapt.
12:47:23 to the amount, like, that I… have, you know, that I do, I feel, in an authentic.
12:47:31 and humble, and… you know, vulnerable forward way.
12:47:36 is pretty incredible. And I know that my kids.
12:47:41 see that, and… I also know that… what I'm not able to do physically.
12:47:49 the amount that I am able to do. in relationship to my kids, and… uh, you know, being with them and being a father to them.
12:47:59 I… I am able to own that. 100%. So… it is… it has been… incredibly challenging.
12:48:10 I'm trying to sort of encapsulate. an incredibly complex and nuanced question into a few minutes of an answer, I hope.
12:48:21 that that I've been able to do that, but… there's so much there.
12:48:28 very thorough, and I definitely think. having… having a disability, and it's… Experiencing its effect as I knew.
12:48:36 from personal experience is very different from being a child… Being a child of someone with… disability, no matter what the diagnosis is, and I think.
12:48:46 Particularly what… well, what you were saying about your… Start resonated with me, because that's.
12:48:52 what I do with my niece and nephew, and that's how they relate to me, because.
12:48:57 You know, cerebral palsy doesn't really change, so I've… been the same since they were born, so they climb all over my chair.
12:49:06 Karen make jokes with me all the time. Whereas, now that my mom is getting worse, and I live with her, you know, it's hard.
12:49:13 To watch her struggle to do things every… every day, and I definitely.
12:49:19 relate to your son's pain on that, because I think it's just… Embarrassment or shame, but it's just… you… Your compassion for them because you know something worse is coming, and you don't want your parents to suffer.
12:49:32 Yeah. Yeah, exactly.
12:49:32 So, I really relate to that.
12:49:38 Is your son a college student?
12:49:40 He is. He's a senior in college.
12:49:43 Oh, lovely, what's he studying?
12:49:45 He's studying East Asian Studies, like Mandarin and political science.
12:49:52 Ooh, that's… that's an interesting mix of things that will serve him well.
12:49:56 Yeah, yeah, he's a… he's a… he's a beautiful, sensitive… Uh, man, young man, he's turning 21.
12:50:06 Uh, in a couple weeks, in November, November 9th.
12:50:12 That's incredible, and really. of shepherded him to adulthood, as he used.
12:50:19 sort of perch upon the precipice of this moment, sort of… gaze back upon everything that two of you.
12:50:26 have been through. What advice would you give to other.
12:50:30 parents out there who are trying to, sort of.
12:50:32 You know, guide their kids through the same. phases of life that you and your son have gone through together.
12:50:39 What a beautiful question. Um… I would say, if I could have sooner.
12:50:46 Uh, again, this is very much in, sort of.
12:50:49 Uh, in brand with the navigating loss and stuff, but, um… is to make space for the vulnerability.
12:50:57 And to really… When you make space for the vulnerability and realize how much.
12:51:04 strength it takes. to live with the vulnerability, as opposed to avoid it.
12:51:11 Um, to talk about the things that are difficult.
12:51:14 to talk about, because when we don't… talk about them when we… compartmentalize when we avoid them, it's not like they go away.
12:51:22 Um, they just grow in the shadows, and they… that, you know, they manifest in other ways that are… you know, that are indirect, but… you don't… we don't get rid of them when we lock them away behind ivory towers. It doesn't work that way.
12:51:39 So, really, just… being real, and talking about.
12:51:44 the sadness, talking about the pain. talking about making space for the grief, culturally, we're awful at making space for grief.
12:51:52 We did, you know, it's like, alright, you have a week to grieve, and then, you know, get on with it, and do on to other things.
12:51:59 Well, living with a progressive illness, guess what? There's ongoing grief.
12:52:04 And I didn't make space for that for so long.
12:52:09 And I wish I did. I wish I had the tools to when I was younger. I wish I had people who helped me.
12:52:14 to be able to do that. So just… Making space for what is there.
12:52:21 Um, and realize that vulnerability is strength. And if you are able to.
12:52:28 make space for it to integrate it. your life and your relationship with your kids is going to be so much richer.
12:52:36 And in developmentally appropriate ways. You're going to talk about this stuff.
12:52:40 with a 10-year-old in different ways that you're going to talk about it.
12:52:43 with a 20-year-old, right? Like, it's not… there's not just a formula for.
12:52:48 How do you talk about this? How do you make space for this? But… just don't ignore it. Don't, you know, it's such a disservice, because there's so… much fertile round here if you make space for it.
12:53:05 And I would also… I would also add that the more you ignore.
12:53:12 Grief and… and trauma in the asset of… Sort of… If you ignore it in ways.
12:53:25 very callous in a ways that… Deny your soul the opportunity.
12:53:30 to speak. That trauma gains more sharper and jagged edges over time, is what I'm… Trying to say, and it will only cut you deeper the next time you encounter it.
12:53:41 Yes.
12:53:45 Um, and to your extent, too, I also. I feel like with death and mortality and different illnesses, people assume that you have to.
12:53:56 She owed children from that, but I also think.
12:53:58 It's more respectful to your child. What if you acknowledge that, and you explain it to them in age-appropriate ways?
12:54:04 Yes, 100%. how are we perpetuating, like, unconsciously and unwittingly, how are we perpetuating.
12:54:11 the illusion, how are we perpetuating ableism by not addressing that?
12:54:19 Right, because we're teaching our children, or even if we don't have children, we're teaching the next.
12:54:26 generation that. Disability is something to be avoided and ignored for as long as possible until it reaches.
12:54:33 some point of crisis, but that's just. horrible for everyone on an emotional coping level.
12:54:38 Yes. 100%.
12:54:43 To the top of the hour, but was there any… that you wanted to say before we wrap up the recording?
12:54:50 just that I've really, really enjoyed talking with you, and… Uh, I'm so glad I… reached out, and glad that you made the time and the space to.
12:55:04 connect that, uh, it's… it feels really… feels really rich and meaningful. I know we've… We've covered a lot in this hour, and um… I'm just grateful.
12:55:18 to have met you.
12:55:22 a lot to me, especially as someone who. Recently, my experience with.
12:55:28 Instability has felt very new and very disarming and very… It's very isolating, so I really… I feel as though diversity has.
12:55:36 me with a unique opportunity in the wake of.
12:55:38 My mom's diagnosis to really reconnect and re-relate with.
12:55:43 disability in a new way that doesn't have to.
12:55:46 Feel terrifying, so I appreciate you for giving me a safe space to kind of.
12:55:51 sort of talk about and work. through those emotions or larger philosophical scarecrows, if you will.
12:55:57 Yeah, no, I think we've given that to each other, which feels really… Beautiful. Thank you.
12:56:04 Of course, and I think… so what I'll do is I'll stop the record… here, and I'll explain to you, um… So, the next steps will be.
12:56:17 What I'll do is I'll write, like, a little summary of what we… That'll be in the description, and then I'll post it on Spotify.
12:56:26 And we'll promote it on social media, so when.
12:56:29 links to everything is live, what I can do is I can email them to you.
12:56:33 Perfect.
12:56:36 Well, David, I really appreciated, this was… such a profound conversation, and I really feel as though it spoke to both.
12:56:43 parts of my life, both as a child with a disability and now the parent of someone.
12:56:48 the disability, so I would. At this point in my life, you were probably.
12:56:52 one of the best and most interesting people that I could've.
12:56:55 Talk to you, so I appreciate your perspective and your worldview, it's really, um, comforting and enlightening to me.