A (2:53)

He's not reducible to WebMD page of symptoms. He is not reducible to the R word. He is not reducible to anything because he is a beautiful human being.

B (3:04)

I'm Ray Jacobson, and today on Hyper Focus, a longer conversation with Craig Thomas.

A (3:16)

So How I Met yout mother ended 10 years ago. I lived in Los Angeles. I'm from New York originally. And my wife and I and my writing partner Carter, we all went to college together and we moved out to LA. And we lived there for like 12 years, about 10 of which were doing How I Met yout Mother. But we moved back here when the show ended. And part of what happened during the run of the show, we had our son in between year two and three of How Met yout Mother. And we had no idea what was going to happen. We had no idea in utero that he would be born with what turned out to be a very rare genetic syndrome. With all of these challenges, we'll get into it. Health challenges. He needed open heart surgery at 2 weeks old. And then we only found out after the open heart surgery that it was all part of this larger syndrome called Jacobson Syndrome. Not spelled exactly like your last name, right?

B (4:05)

You're the same way, right?

A (4:07)

S E L Swedish way. Yes, it was discovered by a Swedish doctor. So well played. Yes, that's who discovered it. Named after Jakobsen in Sweden, that Dr. Jakobsen, but we say Jakobsen here. And it's this really complicated, rare syndrome. It's a deletion of part of one of the 11th chromosomes. And it has medical ramifications and developmental, intellectual ramifications, all kinds of things. And yet I still had to be running this comedy TV show every week. And it was this really interesting balance between. I always said I was sort of living. I was living an hour drama show at home and then driving to work and doing a sitcom. It was just the weirdest thing. I was like a full slate of content, dramatic and comedic content. And so, yeah, we moved. My wife and I really wanted to move back where we had family support, where we were from. So that's what we did at the end of How I Met yout Mother. And professionally since then I've. Well, for one thing, we had another kid. So I have my daughter Celia. She's Nine and she's neurotypical. She's a healthy, precocious little girl. She's different from her brother. And yet they connect quite beautifully, the two of them, despite this nine year age gap. My son just turned 18, which is a whole other conversation. Right. Oh, I have disabilities. Yeah. And so my daughter's 9, my son is 18 and we move back here. And part of my mission after moving back, well, one of my missions was to not be such a workaholic and be more available to, say, have a second child and be with my children because running a TV show is such a full time job. So all consuming. And then, like I said, we didn't know we were about to become the parents of a child with a disability. And suddenly you are. And there were six more years of how much a mother to do or however many more years. And it was like, it was a lot. It was a lot to juggle. So since then I have had part of my mission, besides finding more balance, has been finding ways to write about this. Finding ways to write about this experience of becoming the parent to my son Elliot, and all of the challenges and fears that came with that and all of the massive, beautiful gifts that have come from being Elliot's dad. And so I've been trying, I tried for a couple years, a few years in TV and film to do projects that incorporated aspects of that part of my life. And it's really hard to get Hollywood to greenlight. TV shows or movies about those topics sometimes came very close on a couple things. There's still one that I'm still trying to push up the hill a little bit. But this is a very long answer to what am I doing now? What am I doing now? The last two or three years, I've written my first novel and it is very much about this. The book is called that's Not How It Happened. And it is, I hope, a funny and yet poignant look at a family kind of like mine. It's not exactly my family, but it's a family. It's a mom, a dad and two kids. There's a son who's about 24 with down syndrome. And he's sort of entering into adult life, right. He's in that process of what does adult life look like for somebody with a disability? And he has a younger sister who in the novel is 17, coming up on graduating high school. And the mother and the father, in their various ways are sort of standing on a cliff. Whenever I talk to somebody about, you know, another parent with a disability that has a child with a disability who is coming up on 18, 19, 20 years old without failing. They use the metaphor of a cliff because that's what it feels like, right? They go, well, we're coming up on that cliff. And I would say my novel is sort of about that cliff and about sort of what coming up on that cliff does for all of them and the little cliffs they're all kind of standing on of these inflection points that will lead in different directions for all four lives in this family. So the book is told from four perspectives. All four of the narrators are those four characters. It's such a huge part of my life. Writers write what they know a great deal of the time. And I thought I need to write something and put something out in the world about this topic. And the best way to do it was for the final product to be words on a page rather than a script that a studio needs to greenlight and spend millions of dollars on. Which just wasn't necessarily happening when I wrote those. So that is a very long answer, Ray, forgive me, of what am I doing now? That was the 10 year ramp up to what am I doing now?

B (8:33)

That's amazing. And first of all, I love a thorough answer. And secondly, you know, the idea of having 18 year old kid, period, let alone an 18 year old kid who has disabilities, who is going into the world in this new way, like the cliff metaphor. I can feel it viscerally.

A (8:51)

Yes, yes. It's always the metaphor. And I wrote it into the book. I wrote it into the book that way because everyone says it that way because it feels that way. It's such an unknown. And we, and it's strange how we as a society don't have more and better answers for what adult lives look like for people with disabilities. Right. I mean, it's hard enough sort of navigating everything educationally, everything, all of your child's health needs, health insurance, all those things that are part of childhood IEPs, all of that stuff. But then there is some sort of a roadmap. And then sort of right around 21 and getting into that age, you really, you start to feel like you are looking down on this cliff and you go, I don't know what's down there. We're going to take a leap of faith and see what happens. And it is really strange to me how little of a roadmap we seem to have to answer that question. It's fascinating.

B (9:48)

I keep hearing this from parents of kids with disabilities over and over and over. That there's sort of a map, or there is no map, that it feels like everyone's tracing a different path. And that path is sort of terrifyingly individual and also feels very communal in this way. That is, like, hard to explain to people who aren't part of the group.

A (10:08)

Yes, it's very hard to explain it.

B (10:10)

That feeling and the idea that you wrote a book that, like, takes people into the experience is so beautiful to me. But I'm wondering if I can take you kind of back, because you are in this world now, and it sounds like you inhabit it so fully and are able in a way that, like, I think is really rare, because I keep hearing this from parents, to bring other people in. But before you had Elliot, before you were in this group, before you were on this map.

A (10:36)

Yeah.

B (10:36)

What was your relationship with disability like? Like you working on TV in your 20s. Is that right?

A (10:41)

Yeah, that's right.

B (10:43)

What did your relationship to the disability community look like then?

A (10:47)

Yeah, I mean, it's. I. I viewed it with. With. I didn't understand it. You know what I mean? I. I viewed it. I. I had so much naivete. I had so much ignorance. I. You know, I. I always felt. I always felt sort of a. A kinship with people who had disabilities. Like, I was friends with people who had disabilities in school, but I didn't. You know, I didn't have some larger understanding of what it really was like. One of my closest friends had cerebral palsy, and he was just this awesome guy. He was very athletic. He had, like, you know, he limped. He had different body challenges, but he was so good at, like, baseball and tennis. He was amazing. He was just my friend. But I noticed as we got into junior high school and high school that people would make fun of him sometimes, and I thought to myself, this guy. What do you. This guy's a better athlete than you are, you jerks. What are you talking about? Stepwire. Overcoming some certain challenges. But it was funny with that friend who I was friends with all the way through high school. We never talked about his disability. It was the 1980s into the 1990s. We never really talked about it or his identity or what it meant or what it felt like. He was just my friend. And I grew up, too. I have a cousin who has down syndrome, and he. You know, he was cir. We weren't close. We didn't live in the same town, but I always loved him, and he always had a great spirit. He's still with us, and I don't know, when you have somebody in your family with a disability. I think it does make you less inclined to be a bully or to make fun of people with disabilities, but it's not like it gives you. Especially in the 80s and 90s when I was growing up, it's not like there was some really robust, nuanced understanding of it or discussions about it.

B (12:31)

No, not at all.

A (12:33)

So I wouldn't say that I had a particularly deep understanding of it beyond the people I happen to know who had disabilities.

B (12:40)

Oh. And I'm curious about what that looked like when you started in media because I'm. I think we're in a similar age group and what I remember is that you're also 35.

A (12:48)

Great.

B (12:49)

Yeah, I'm going to be. I've been 35 for like maybe five, six years. It's funny how you get there and you.

A (12:53)

How do I have an 18 year old and I'm 35? Anyway, it's just weird. Yeah.

B (12:57)

I'm so glad that we're both 35. It's a great age to be.

A (12:59)

We look amazing.

B (13:00)

We do. Of course, no work done. But in the way that like when you become conscious of something like I have learning disabilities, but they're invisible. No one who would speak to me would necessarily know. And I was always able to mask pretty effectively. I'm a girl with adhd, so I was not just masking, but fully missed. And in some ways that served me. But if I couldn't do something, I also have dyscalculate. I can't do math, among other things. And if I was having a hard time doing something in my life, people have used the R word towards me. What do you. This, you know.

A (13:35)

Right, right. Oh, boy. Makes my blood boil. It's just makes my blood boil so much. Please keep going. I just need my blood to boil for a second.

B (13:43)

No, allow the blood boiling. And then. Yeah, that's what we bring you here for is just really enrage you. But you know, I feel like at the time it didn't. It was like upsetting. But I also like, it was such a commonly used word and in my memory it was pretty commonly used on television and in movies and in film. And the way people with disabilities were depicted wasn't always. I mean, and I say wasn't always. Was basically never thoughtful or sensitive.

A (14:11)

Never borderline never.

B (14:12)

Yes, Frequently the butt of the joke. And you know, when you started working in TV and film, like do you remember hearing it? And I mean, I think I have like a picture of a writer's room in my Mind. And it's maybe not the kindest place.

A (14:26)

There are those writers rooms for sure there. Yeah. Still in reality, I'm going to be 50 in August. Right. My writing partner Carter and I, we got hired at age 22 on David Letterman. So we're these kids in the mid late 1990s. And 100% people threw around that word at that point without thinking twice about it. I even, I'll say this now because I've made such a crusade about this word. I wrote this essay in the Boston Globe, I have published a short story and Iowa Review, and now I've written a novel, all of which touch upon this more. The larger story and feeling and experience of being the parent of someone with disability. But specifically within that, the words that are used and the diminishing, dehumanizing ways that people with disabilities continue to be talked about even in 2025. And sadly, there seems to be a real rise in the culture of talking about it that way. And I know we'll get into that ray in a second, but to just turn it back on myself for a second so I don't sound preachy and holier than thou. I didn't scold anyone for making R word jokes in 1997 or 2000.

B (15:41)

I don't think anyone did to my.

A (15:43)

Knowledge and to my great shame. I looked back not too long ago at a screenplay unproduced, didn't go anywhere that Carter and I wrote that had that word in it. There was a joke where someone used that word. This is something that 25 year old Craig thought it would be okay to put in that screenplay. Not understanding anything at the time or however old I was when I was working that. Almost 50 year old Craig looked at this the other like recently, like a couple months ago, I was looking back through this old screenplay and I found that word and I sat with was like a punch in the face. It was proof that I had used that word in the past and that I had committed it to paper and thought it was okay. Because in the late 1990s it was a comedy word. It was an edgy comedy word. It's like a funny punchline to say, and I hate to say it, it seems like it's coming back. There are people in the culture now and in politics now dedicated to bringing this word back.

B (16:46)

They're celebrating it.

A (16:48)

They proclaim victory around champagne, a victory. We've reclaimed this word. Like something has been achieved. Some great thing has happened by going back and finding this slur and saying, hey, no, we get to use a word that disparages the disability community. To call anyone stupid and worthless by association, saying the disability community is stupid and worthless.

B (17:12)

Stupid and worthless.

A (17:14)

The disconnect of seeing that, that those go hand in hand. They say, no, it's just a funny word. It's actually not. Words do actually matter. Yeah.

B (17:22)

They mean something.

A (17:22)

They mean something and they shape how we think about certain types of people. Right. And the other thing is, if you talk to somebody in the disability community, like, I've heard wonderfully eloquent anti r word speeches by people with down syndrome, by people who say, I do not like how this word diminishes me. And yet the people who defend this word seem to say, no one cares. Everyone knows it's a word that's just cool and funny and comedic. And no one thinks it's related to disability community. That's just yet another lie. Because people with disabilities absolutely will tell you no. That is a slur against my identity. Like any other racial or religious epithet. Slur, Bigoted word. It is right. The exact same as that. There is no difference. And between those things. And it's very hard to convince certain people of that fact for some reason. I'll never understand why. But to bring about myself. There was a time where I thought as a young man, apparently I didn't even remember thinking this was true or using this word particularly much. But there it was, staring me in the face in the screenplay. And it was. I really almost burst into tears when I saw it because my son's a. You know, my son is now 18, and I've spent 18 years really reprogramming my mind and soul and just seeing the world so differently. So my son was born in 2007, which is still quite a while ago. And I think a lot has been learned about how to talk about disability since then and certainly since the late 1990s. But I remember going into my writer's room after my son was born and thinking, I've got to tell people, you cannot make jokes like this around me anymore. And I had to explain that now. How I Met yout Mother Writers room was full of all big hearted, wonderful people. I don't know that that word was ever tossed around in that way in that writer's room. It was a really wonderful writer's room. They're not all like that. But just because I know comedy writers do play it fast and loose and throw around terms and like, I just didn't even want to risk that anyone would think it was okay to say that Word around me, starting from my son's birth. And I guess it's one of those you don't know till you know kind of things.

B (19:34)

You know, I think a lot when you say the How I Met yout Mother's Writer's Room was a kind and like, loving place. In large part, it sounds like, because you made it that way. And I can only assume that's why that show resonated with so many people. But I keep coming back to this idea of, like, we hear a lot about it and from the people who are celebrating using this word or being able to use it again, as if they ever stopped in the first place.

A (19:56)

Right.

B (19:56)

Is, you know. Oh, you know, it's just. It's transgressive, it's funny, it's edgy and it's. Yeah, I'm interested from your media perspective. Like this concept of, I don't know, it's like punching down, like the shock value thing.

A (20:10)

It is punching down. Comedy was not designed. Comedy at its best does not punch down. It's not what it's about. That is not why it exists as a mode of expression. It's not bullying. Comedy is not bullying. Comedy is thought provoking. Comedy is satirical. Comedy is looking at the world and commenting on it through in a way that maybe no one else could save through a comedic lens. But boy, is it not bullying. Boy, is it not being mean. Being the edgy comedy. And this was a thing like in the late 90s, early 2000s, and I think it's coming back. Edgy comedy is almost never funny, in my opinion. It's almost never funny. We're doing this Rewatch podcast for How I Met yout Mother. Josh Radner had this idea. He said, look, it's been 20 years since the show launched, which is insane. 20 years in. This September of 2025 will be the 20 year anniversary from the launch.

B (21:08)

And it was when I was 15 years old.

A (21:11)

Well played. That's what we call a callback. See, that's clever comedy. That's not edgy, punching down, bullying, crappy comedy. That was called clever. Yeah. So we are rewatching and it's about 10 years since it went off the air. So it was these two round numbers, 10 and 20. And Josh said, let's do this Rewatch podcast. Whoa. And so we're doing it. And I hadn't rewatched the show in years. And mostly the show is this very. It is the most emo sitcom of all time. It is all. It wears its heart on its sleeve. It Plays like a soap opera. It plays like an hour drama. It's serialized. It's a weird. It's a weird beast because it looks like a sitcom, but it's kind of not. I say these all as things I love about the show. I'm not saying it is a bad. I think that's why the show.

B (21:55)

No, I think these are all marks.

A (21:57)

I think those are all what I think that's what the show. That's what was special and unique about the show. You've got to find what's your thing. What do you do better than other shows. And you say this is our thing and you commit to it as a result. It is mostly not edgy comedy. But I will say this, we're only like 1012 episodes into the rewatch. I've already caught a few moments from 2005 where there's some joke where I go, I wouldn't do that joke today. You know what I mean? I wouldn't do exactly that joke. Maybe I wouldn't say that word. There's just a couple times where the word transvestite is used to describe. There's a transvestite hooker out on the street painting a picture of a crazy scene at three in the morning in New York. It wasn't meant to be insulting to that community, but it's singling out that word. It was using that word in a way to say like how crazy is New York at 3 in the morning? Or whatever it is. Yeah. And I don't. I look at it, it's like that's sort of cheap and edgy. You're just saying that word because that word feels edgy. This is me. I don't know why this podcast system. I'm just doing me a culpas on this podcast now. But, but I think it's. That's why we bring people I want. I guess the point I'm trying to make is you. You don't know. You do have to evolve. You do have to learn as you go. Even this open hearted show that is full of love. How I Met yout Mother. We had a few moments as younger comedy writers, 30 years old when you launched the show where we didn't realize some of those words. Maybe you don't need to say those words as a part of a punchline of a joke. Even if it wasn't your intention to insult somebody with that identity. It's still you're name. Checking this word in this comedic way that isn't actually comedic. The point I'm trying to make Here is the couple of moments like that I found so far rewatching the show. The jokes are not worth it. They're not funny. There was a better joke to say there, but it's just. That's my biggest thing. It's not actually funny. It's some stunt double of what people mistake to be funny, and it's not. And these guys, like Joe Rogan and Elon Musk and these guys championing, bringing back from the nearly dead the word. The R word.

B (24:06)

The R word and measles, as if that.

A (24:10)

As if that has achieved anything. And they are both very contagious. Both of the two things you just named are contagious. And people hear it, and all their little followers hear it, and they think this is an okay thing to say now. And that anyone that tells you different, that says don't use the R word is woke and stupid and sensitive. When I very mistakenly sometimes engage with people online about this topic, you better believe that their second or third move they have is to call you the R word right back. You're the R word for saying I can't use the R word. And you're like, buddy, I don't know how to continue this discussion from here.

B (24:48)

Guess we're at an impasse, my friend.

A (24:49)

Yeah, I guess you win in your mind, but not really, you know.

B (24:53)

Well, this is, like, a thing I think about a lot, and it's kind of the thing that made me want to have these conversations in the first place, which is like, how do we take people who think this is funny or feel like it's just like, you know, people say they can't do it, they want to do it even more, and they just are so divorced from, like, what it actually means, what the impact really is. Yeah, this thing, it's a question that keeps coming back to me, which is like, you'll hear people be like, well, it's free speech. You know, Like, I. I just want to use free speech and, like, say what I feel. And it's like, right to me. Of course you have free speech, but that is lazy speech.

A (25:30)

Yes.

B (25:30)

You could find another word. Like, you're saying you could come up. You could evolve. Even if you said it before, you don't have to cleave to the thing you've always been. You can change.

A (25:38)

There are really colorful, wonderful ways to describe something that is a absurd, stupid, ridiculous, hypocritical, hapless. There are so many funny ways to talk about those things without resorting to this incredibly easy punching down, useless, like, outdated way of calling something. Those things, I would say, challenge yourself to be more specific. What do you mean? What do you think that word even means? And also I think, how do you get someone to stop saying this word? I don't know, because I engage with people sometimes in social media, and once or twice, maybe a handful of times, people have said, you made me think twice about this. I hear what you're saying. Okay, I'll share. Why those exchanges worked, I think, because I said, this is very hurtful to me because sometimes it would be with fans of How I Met yout Mother even, or people that were engaging with me on some other issue. And I'd say, look, if you like any of the work I've done, I just want you to know I am a human being. I love my son more than anything in the world. And this word is a slur against an aspect of his humanity and his identity and a journey he's on. Think about it. He didn't ask for extra learning challenges in life. He didn't want that. But he has that, and he has to overcome that. And he deserves respect for that. And to use words, these lazy, prepackaged words that equate having a disability with the abstract concept of just stupidity, worthlessness, haplessness. If you're saying those two things are the same, they're not. You're really hurting my feelings because my son is so important to me. So the times I've made it personal are the times when I've had it work. But then if you make it personal and the person still says, f you, you're the R word, it hurts even more because now you feel like you kind of opened your heart to that person and it didn't work, and they just sort of stabbed the. Stabbed the dagger in a little deeper. But the times it's worked are the times that made it personal. I see this word coming up a lot online on social media, and, you know, it's thrown around in political discussions a lot. There. There is. I see it a lot in that sort of way where people say libertard. You know what I mean? Equating. There's sort of this, like, let me take what I perceive to be your political beliefs and equate it with that. I see all these different ways people are trying to bring it back. And I think to myself, if they had somebody in their life that they loved who had a disability and said to them, it really hurts my feelings when you use this. It really diminishes me and disparages me that might be the only way to get through to somebody like that. I think there's a lot. I notice this phenomenon a lot, where people only understand something abstract when it comes into their life in reality and specifically. And so the challenge seems to be, if somebody doesn't have that in their life, you have to talk about it in a way that makes it visceral, emotional, and real to them. And that takes a lot of trust because you're opening something up in your heart. If I talk about my son to somebody and they still insult me with the R word and say, you're just woke and screw off, that hurts more because I shared something of myself with that person. But I think you have to have an open heart and you have to try to talk to people about how it feels and that we are all human beings, we all have value. This is a word that devalues. This is a way of talking about disability that devalues people. People with disabilities are human. They have parents and families who are humans and love them and deserve respect and decency and humanity, dignity. And I just think the only times I have felt a level of success in engaging with people is when I make it personal to them in some way. And, of course, I've now written a whole novel that I hope does that, and I hope it does it in a funny way. It's mostly a comedic novel. And I find that comedy, the right kind of comedy, can disarm people and open them up. And I hope that I found a way of writing about it in my book that might open a few minds and might make people realize, oh, I. I see why this matters. I see what this is.

B (29:53)

This makes so much sort of sense to me as a constellation of things where it's like, if the comedy that punches down and is shock value, and that's isolating, right? You're pushing people out. The kind of things that you create pull people in. And it also, like when you say, because I can relate very much the feeling of having to make the thing that hurts personal in order to have other people care. Like, one of the questions that comes to me over and over and over as I do this work is how do you get people to care about things that don't affect them? And one of the only ways that I've seen that happen is through media, is through art, tv, books. You become intimately acquainted with characters that are not real people, but they feel very real to you. And when you talk about writing the book, it's almost like. Because I do feel like, as People in the disability community, we do what you're saying. We have to kind of lay ourselves bare over and over and over and say, please care. Please care about this. Please, please.

A (30:54)

And it's exhausting.

B (30:55)

Acknowledge my humanity depleted.

A (30:57)

You can do it sometimes, but there's no other way. Right.

B (31:00)

So it's like you have to, like, kind of like throw open your chest and be like, look, I'm a person. Just give us. Give some amount of a. Give a Care as the song Give a Care. And, you know, but, like, that wears you out. It's tiring. And you have to do it on a lot of fronts and in a lot of ways. And for me, when I see something like your book or like that piece, which was so beautiful in the globe, you know, there's this beautiful level of removal. You know, you're making people care. You're making it personal. Excuse me? You're making it personal.

A (31:30)

Yeah.

B (31:31)

Through art. So it's almost like you have a screen in front of you. You're still. But you're still bringing people in.

A (31:36)

Yeah.

B (31:37)

Which I don't know. What do you think about that? Like, what responsibility do media to art have in this world? Because it feels to me like that's the biggest stage you can do.

A (31:45)

Huge responsibility. That's that. That's why I feel like we have to be out there. That's why I'm so glad you're. You're doing this podcast. That's why I'm trying to write stuff, think it's a huge responsibility. I think when people can be engaged on a human level, the way that an honest conversation in this podcast space could do, the way that I hope my book can do, the way I hope that psert for the Boston Globe did, it has to be on a human level. I think. I think when it's abstract, people can swat it away and it remains abstract. So much of human Life now in 2025 is abstract. It's digital. It feels at a remove. Right. It doesn't feel real. And so it's. How do you make it human? How do you make it vis. Visceral? How do you give it a beating heart? And I think that's the huge challenge. That Boston Globe piece I wrote was kind of admitted to my own ignorance a bit in ways that I've done in this interview, too, where it sort of takes you through this journey of, like, I became the parent of a kid with disabilities, and I was in Hollywood, and I was trying to figure out how to make the disability parenthood part of My life fit the Hollywood part of my life, and I wrote about the ways that it didn't fit. Right. I wrote about ways that I felt very lonely and unseen in Hollywood. I felt. And I didn't have to talk about it myself. And then retrospectively, I think about, if I could go back in time, I would have put people, I would have cast roles on how much a mother, more often with people with disabilities. I would have made that visible on my show. I was so young. I was in my 30s. I didn't know how to be the parent of a kid with a disability. Right. I had no knowledge. And I was trying to run that TV show and raise my son. And I wasn't coming at it with this higher level of awareness and realizing I should try to incorporate this into my work and make this visible and emotional, palpable, real in my work. I thought they were two separate things. And now I realize that's not true. And I'm trying to make art and writing about this now, about this topic. But when I was doing How Much Mother, I didn't know how. And so that Boston Globe essay, I sort of call myself out a little bit and say, I wish I could go back in time and hire writers with disabilities and cast roles. But I didn't. I just. I was not doing 3D, thinking I was so day to day, just trying to, like, be a. Be there for my son and run this TV show. And it was. I. I'll admit, I. It was, like, all too hard for me to think on that higher level, but now I'm trying more to think on that higher level and say, how can you put things out there in the world that humanize this? How can you use whatever your little talents or skill sets are, whatever your ability to communicate is, like, how do we do that? How do we make it human? How do we make it a felt experience for people? Because if it stays abstract, people can insult and diminish and swat away things in the abstract that when they are face to face with it and it feels real, even if it's a novel, even if it's fictional, but if it feels real and these feel like real people, you can't dismiss it and disparage it so easily.

B (34:42)

You have to see the whole person.

A (34:43)

You have to see the whole person. And I wanted to ask you, Ray, like. Like, what did it feel like to you getting that word thrown at? What did that feel like? Did that feel like. Did you know, I don't know when you got your diagnosis or when you, like, to what extent you felt you were, like, hiding, and then people would say something to you. It must have been, like, really shocking and horrible to have someone say something like that to you.

B (35:03)

It felt like getting caught. It felt like getting caught, and you would just. But you also kind of do the thing, you know, like. And I think, like, everybody at a young age does this when somebody says something that hurts you. Right. You just kind of like, oh, yeah, this kind of, like, shambling. Brush it off, wiggle away from it. But for me, because I knew that I wasn't. I've used this phrase a lot on this, and I keep saying that because I keep using it, but, like, I knew that I was, like, not like the others. I was one of these things that was not like the others. I have adhd. I have dyscalculia. As a kid, I also had dysgraphia. I couldn't write. My spatial awareness is not great.

A (35:41)

Yeah.

B (35:43)

But I could always cover. And so when somebody would say, like, what are you? You know, I would think, like, oh, my God, I didn't do it well enough. You know, I would. I would freeze and feel like I had been seen in the. In a way that was not the way I wanted to be noticed. Like. Yeah, so. But did you have.

A (36:01)

Did you literally have those diagnoses or those sort of, like, categories or labels upon at that time? No. Right. You were just. You knew that you had challenges. Maybe your parents knew, but you felt like you're just gonna have to fit in. Because I'm assuming for contemporary ages that there was not much support or much recognition or much conversation on the levels that you would have needed it or that you would hopefully get today, if you were a teenager today. But I. You know, I'm assuming you felt very lonely and, like.

B (36:30)

I felt very lonely. Yes. And also, I mean, I was lucky enough. I have enough privilege to have been diagnosed at 21, which for a woman is frankly pretty early.

A (36:41)

Right.

B (36:42)

And. But I failed out of school. I mean, I, like, crashed and burned in every conceivable way. And, you know, if you were to look at, like, what are the negative consequences of having learning disabilities on paper and being undiagnosed? Like, you could basically read my story up to about age 21. Yeah, yeah, but that word for me. And one of the things that I struggle with even in this conversation, is when I'm like, I'm part of the disability community because I was able to pass because it wasn't something that I had to wear all the time, I feel Sometimes, like, I'm like an imposter within that space. Like, you know, I could hide it. So do I really get to call myself disabled in this? Like, to me, that feels like an inclusive word. I'm part of this wonderful community that is, like, a privilege to be part of.

A (37:27)

Right.

B (37:28)

But I worry sometimes that when I use it, I'm, like, my friend used to call for other things, fake the funk. Like, I'm. You know, like. So it was. It's a tricky word in that way of if you have an invisible disability, you both relate to it and experience it, but in a way that I think also when we hear from people with down syndrome or we hear from people who have clear disabilities that are, like, physically obvious, most of them say they've never had that word said to them. Yeah, because of what you're talking about.

A (37:57)

Right.

B (37:57)

People don't. Most people don't think of themselves as the kind of person who would show up and call someone who had a visible disability the R word, but they're perfectly happy to use it online or use it towards somebody who they don't realize is in the club.

A (38:10)

Yes. Oh, man, that is all so fascinating. You saying you felt caught in that moment is just, like, so heartbreaking. I mean, it's. And in terms of, like, your identity, I mean, to me, I'm the parent of a child with a disability, and I write about this sometimes. I sometimes feel that way, too. Like, you know, do I have a right to write about this topic? I'm only the parent of somebody with a disability. It's somebody who I love more than anything in the world. But, you know, I think we all have that imposter syndrome, Ray, of, like, what is our. What authority or authenticity do I have talk about these things? But to me, for what it's worth, you're doing a beautiful thing by talking about all of this and your journey, and you are a part of that community, and you're using. You are, like, using your talents and your voice to talk about it. And that makes you a part of the community and you already over too. So it's like, you should not overthink that. Right. We all need each other in this conversation, and we are up against a culture that views people with disabilities in really ignorant, dismissive ways sometimes and in ways that are invisible to them. I think the argument for the R word is sometimes it's just a funny word. I'm not thinking of a person with disability when I say that. The problem is it does hurt the feelings of people with Disabilities. Like, you're not running around saying a racial epithet in public because you know somebody's gonna take huge issue with it and say, why did you just say that word? And so if that community says it hurts them, which they do say that, then the argument that it's just this word that's been abstracted and now it's just a funny word and nobody cares. People care. Guess what?

B (39:52)

People care.

A (39:52)

People do care.

B (39:53)

It does matter.

A (39:53)

So that argument holds no water, I think. Yeah.

B (39:57)

Can I ask you, because you did were so kind and validating just then, and I want to return it a little bit. As a parent, you said, I wish I'd known more when you were doing the show and you just had Eliot and you were trying to figure out how you could bring those two things together. That is a wildly intense experience to go through for anyone. Even if there's nothing going on with your kid, even if your job is a simple job. It's a lot to have a baby and then a growing child and a job. So I just want to validate that. That was. I don't think you need to be like, God, I wish I had been better. Because although we always and always do right, as parents, as people, but I do want to, like, ask, as a parent now, like, you have all this perspective, and Elliot's 18, and what are you excited about for him? Like. And, you know, on the flip side of that, like, what. What's keeping you up at night as the parent of a child who's going out into this world?

A (40:56)

Yeah. Great question. Thank you for that comment. I do still. For that supportive comment. I mean, I do still. Look, I want to say one thing on that, because I do still look back on it. I'll try not to beat myself up too much, but I do. I regret that I had a certain kind of platform that I probably could have used to talk about it more. But do you want to know the truth, Ray? I think I was masking a little bit, right. I was like, well, we'll see what happens. I wasn't fully embracing it. He has a rare syndrome. I don't know exactly which way it's going to go. There was some level of denial or not fully embracing what was happening or not being able to compute it well enough to know how to write about it or talk about it. I was sort of slowly sharing it in my personal life with people. But it is an unknown road, a rare genetic syndrome. There aren't that many people with Jacobson syndrome in the world. And even within that population, there's a lot of different manifestations of it. 50% of people with Jacobson syndrome have some sort of heart problem. The other 50% don't. That is a testament to the complicated cocktail of the human genome, why I'm missing basically the same parts of the 11th chromosome. They're just more or less. Do some people's hearts not sort of form correctly, but others do. It's sort of incredibly fascinating. That's why there's this amazing doctor that studies Jacobson Syndrome, Dr. Paul Grossfeld, that is like the beacon of light to that community. And he's the reason for so much of the published medical literature, his research. I do a lot of fundraising to support his research and he's amazing. But at that time, I didn't know exactly what it was going to be and I didn't talk about it that much. And I think that was my way of being a little bit like, I'm just sailing under the radar. I don't want people to see me or see my son this certain way. As if there's some kind of hiding from it or some kind of need to hide from it. There was something resisting it in my mind, like resisting sharing it wider than my. Than the small handful of people and how I met your mother and my friends. And I think that's. I don't know, it just. It reminded me of that feeling, like when you said you got caught or something. Like the moment where, like, you have to sort of embrace this hard thing, right? That's hard to share with the world and you feel vulnerable doing it, but you sort of grow into that role, I guess. Hopefully. I guess I'm trying to, but. Yeah. So that's me when Elliot's a baby. Here I am, he's 18, in between. I feel like I've learned so much. So much. He's amazing. He has taught me everything. Important to know. He is the most musical person I've ever met. He is this wonderfully musical soul. So imagine that this is a guy who. He has a lot of fine and gross motor skill delays and spatial problems with spatial relationships and save their safety issues around that. This is a guy who. He can't button a button. He can't really do handwriting, but he can play Led Zeppelin on the drums. He can play Radiohead on the drums. He can play the Pixies on the drums. Basically, I've indoctrinated him to think it's 1986.

B (44:00)

I was going to say that's pretty good.

A (44:01)

Pretty good.

B (44:01)

Music choices.

A (44:02)

Pearl Jam. Is his biggest one, I should say Pearl Jamie. He's basically like a dad rocker. At age 18, he's like, can you.

B (44:09)

Do the Addie Vedder voice to, like.

A (44:10)

Back it up then? Not in public. I can. If you walk by my house at the wrong moment, you might hear it and go, what is happening inside?

B (44:19)

What's your address?

A (44:21)

But he. So I taught him. I'm a drummer. I taught him drums. He got so good at the drums. I got kicked off the drums and now I just play guitar and sing and pretend to be Eddie Bedr at times. And we probably play like 50, 70 songs together. We have like this catalog. And so this is a guy drumming his heart. You have four different limbs doing four different things.

B (44:41)

Yeah, I can't do it at all.

A (44:43)

He can do that, but he can't button a button. Zippering a zipper was in the last couple of years. He got that. This is all to say one wonderful word, I think, to describe or one not wonderful, an accurate word to describe him. When people say, well, what word would a. The atypical learner idea is fairly applicable to him. He just has these different challenges and these different huge strengths. And it is so interesting to watch that journey. He's funny, he's sweet, he's musical. And he just played drums in the pit band for his school musical. And I'm basically in a band with my son. And we do. So we do a How I Met yout Mother based fundraiser concert for that amazing doctor I just talked about who's researched. So we've done it three times now. If anyone's in New York, please follow me on social media.

B (45:31)

That's so cool.

A (45:31)

And check this out, because we do it once a year and we have actors from the cast of How Much yout Mother come. We have musicians whose music we use on How Much yout Mother. At this past one, we had Josh Radner and Will Forte and the lead singer of Not a Surf and all. An amazing lineup of people. Of all those stars and celebrities. Elliot was the star of the night because I got him out. And he played drums on four songs with us in front of 650 people. We packed the Ballerie Ballroom. But if you're asking, what are those moments of joy, what are those moments? I wish I could go back in time. How Much Mother Was a very time jumpy show where we jumped to flashback, flash forward, blah, blah. If I could flash back to when my son was just born and I thought, how am I going to do this? How are we going to do this, how is my wife going to do this? How are we all going to do this? If I could have had a crystal ball and gone back, now I'm 50 basically and I go back with a crystal ball and I just get to give like 30 year old Craig or whatever, 32 year old Craig, just one glimpse in a crystal ball. It might be Eliot playing drums in front of 650 people at Valerie Ballroom with a full band including professional musicians and honestly killing it, honestly nailing it. He is so rock steady. He was so great. I was up on guitar singing those songs. We did a few comedy songs from How Much Mother that Carter and I wrote and I messed up the lyrics at one point and he was rocksteady. I totally blanked on some lyrics. I had to vamp for a second. And he was rocksteady and just so was so proud of him. And just one of those things, you're like, I just wish I could have seen that moment. And that could be any number of moments for any number of people. But those gifts, you can't imagine. When you're catastrophizing and you're worst case scenario and you're reading the Google page about the genetic syndrome and reading every worst thing and going, all of those are going to be in my son. And then what you realize again, coming back to humanizing people, then you look at the human being that is your child and you realize this is a human being. There's a lot of factors here. Yes, he's missing a little piece of one of his 11th chromosomes, but he's him, he is him. He's not reducible to WebMD page of symptoms. He is not reducible to the R word. He is not reducible to anything because he is a beautiful human being and he's sorry, he's gonna make me cry. He's going to be more than anybody could ever imagine. He's going to be himself. And he cannot be reduced to any one thing. And I think that's the gift of it. The challenge of it is wanting the world to see him that way. And now that he's 18, I want him to go out in the world and be seen with that robust, generous, open minded approach rather than something reductive. And that how his next few years will go and what his education will be and how that will all work is that stuff keeps me up at night and it's a lot of problems to solve. And like I said at the beginning of the conversation, it's range, how much it is in the wilderness and it's each person you talk to who's gone through it. Is it the parents who've gone through it trying to devise sort of next steps for their child collaboratively with their child? Everyone is doing an improv game. There's just. Everyone's like, well, we did this for a couple years and we figured this out. Then we found this thing where it's this company that has people who have disabilities and they welcome them. And then we did that for a couple. It's all like this constant game of improvisation. Yeah, yeah. Sorry. Sorry I got emotional there. It's funny. You can tell there's just so much in this conversation. There's a lot, right? There's a lot. We're looking ahead at a lot. And all of this is in my book. And I'm trying to channel all of those fears that keep you up at night and find how can I make this funny? How can I make this human? How can I write about this in a way that people will relate to, whether or not they're in this experience? Because I think the experience of being a parent and being in a family. My book is about being a parent and being in a family. It is a family with one of the members has a disability. But I think every parent. There's this great quote that I love that, like, I'll get wrong now, but the. But parenthood is letting your heart come out of your body and walk around on your side. Yeah.

B (49:49)

When your heart lives outside.

A (49:50)

When your heart lives out. Yeah, yeah. And it's like, that's parenthood. That's all parenthood. That's not disability based parenthood. That is all parenthood.

B (49:59)

That's so accurate.

A (50:00)

And what is the future for your child? How can you make the best future for your child? That is just universal. All of our parents wanted that for us. And if and when we become parents, we want that for our children. That is universal. And that's what my book's about. And that's what keeps me up at night. But it's also, my son has shown me time and again that I don't have to be so afraid and that he can do so much. And yeah, there's a lot of gifts in this journey. There's a lot of gifts in this journey.

B (50:37)

I love that he sounds like just an amazing guy.

A (50:40)

He's a really good guy.

B (50:42)

And I love that you just want him to be seen. I don't know. This is how we all feel, right? We want our kids to be seen as whole people just for the wonder that they are.

A (50:51)

Yes, yes. And I'll say this one other thing about that idea of passing or masking. In the last couple of. In the last year or so, my son has lost. Lost all his hair. It's a very rare syndrome of Jacob, very rare symptom of Jacobson syndrome. Like almost to the point where you're like, is it a symptom? We know a couple other people with Jacobson syndrome this happened to. And so he's completely bald. His eyebrows are mostly gone. He looks different than he used to. Right. And he instantly looks more different than he ever did, if that makes sense. He's more recognizable instantly as someone that has something medical going on or something disability based going on. I think people see him differently than they did a year ago. Right. And it's so interesting, that idea of masking or being caught or whatever it is, because I miss him having his hair, because his hair was beautiful. And every now and again he goes, I wish I still had my hair. Other times he goes, I'm just like the drummer of Radiohead, Phil Selway. He's bald and he's awesome. And I'm like, yes, he is bald and he's awesome. And it's just really interesting. It's interesting now to go through the world with him and people look at him differently than they used to. But also there's. I think it's good because it's like, let me embrace that new piece, right? Each new piece, each new chapter, each new part of this, you've got to wrap your arms around it and go like, this is what it is. And we will figure out life like this now. And it's not really going to change that much. And maybe it'll make everything more honest. Maybe it'll make everything. Maybe we'll discover gifts in that that we didn't know about. So it's just interesting, that idea, the idea that there should ever be any masking or shaming or hiding or passing. It's so unfortunate that anybody ever has to feel that way. And I think that circles all the way back to the way we talk about and think about disability in America and the world. What words we use, the space we make to be either inclusive or exclusive, disinclusive, disincluding people, diminishing people, using derogatory terms. No one would feel the need to hide or pass or feel shame if we were in a society that didn't use things like the R word and that instead just be people. How do we include. How do we open up the world? How do we make a space in our society for everybody?

B (53:23)

Craig's upcoming novel is called that's Not How It Happened. It comes out this fall and is available for pre order now. You can find a link to that and Craig's podcast How We Made youe Mother in the show. Notes Hyperfocus is made by me, Ray Jacobson and Cody Nelson. Our music comes from Blue Dot sessions. Our research correspondent is Dr. K.J. nguyen. Calvin Kinnee is our video producer and video is edited by Alyssa Shea. Brianna Berry is our Production Director and Neil Drum is our Editorial Director. Production support is provided by Andrew Rector. If you have any questions for us or ideas for future episodes, write me an email or send a voice memo to hyperfocusnderstood.org this show is brought to you by understood.org our executive directors are Laura Key, Scott Koshir, and Jordan Davidson. Understood is a nonprofit dedicated to empowering people with learning and thinking to differences like ADHD and dyslexia. If you want to help us continue this work, you can donate at understood. Org. Give.