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OCD - Day in the Life with Jonathan Katz-Ouziel · Accessible Community

• 0:00
  Taylor: Welcome to the Day in the Life series on the Accessible Community Podcast, where we will be exploring disability and accessibility in everyday life.
• 0:11
  Taylor: Each podcast episode is a new lens to broaden our understanding and drive inclusion.
• 0:17
  Taylor: For show notes, go to accessiblecommunity.org slash podcasts.
• 0:23
  Taylor: Let's make accessibility part of every day.
• 0:26
  Taylor: Hey everyone, welcome to another episode.
• 0:29
  Taylor: And uh for these uh next few recordings, we're gonna be talking about OCD, which I'm looking forward to because something we've talked about in a lot of our interviews so far are misconceptions.
• 0:41
  Taylor: And I'm really looking forward to hearing Jonathan's perspective.
• 0:46
  Taylor: But I feel like OCD is something you see a lot in media and people talking about and hyperbolizing and maybe misrepresenting it.
• 0:56
  Taylor: So I'm looking forward to hearing from Jonathan and others to give a really real perspective of what it's like living with OCD.
• 1:04
  Taylor: Um, so thank you, Jonathan, Jonathan, for joining us.
• 1:07
  Taylor: And I'm really excited to hear your perspective on that as well as any other topic we get into.
• 1:13
  Jonathan: Definitely, and it's great to be here.
• 1:15
  Jonathan: This is Jonathan speaking.
• 1:16
  Jonathan: And um, for those of you who are not familiar, I'm actually heavily involved in another uh part of accessible community called Tally TA11Y.
• 1:25
  Jonathan: We create volunteer-driven technical content to help with accessibility.
• 1:29
  Jonathan: So it's fun to be on this side of the house with my friend Taylor and uh good to meet you all.
• 1:33
  Taylor: Yeah, absolutely.
• 1:34
  Taylor: And so you had mentioned a little bit about your work with Tally here at Accessible Community.
• 1:39
  Taylor: Um so can you describe to the audience a little bit more about yourself, not necessarily just through the lens of accessible community, but the other work you do, and then after that, I'd love to for myself learn more about you, but for the audience as well outside of work.
• 1:55
  Jonathan: Well, so I'm actually gonna blend it a little bit.
• 1:57
  Jonathan: Um I've I like to joke that I'm a professional autistic person.
• 2:02
  Jonathan: I've uh been autistic my whole life, um, contrary to what some people in the media would say.
• 2:09
  Jonathan: And um I've had diagnosed OCD um since I was a teenager, so and probably since I was a child.
• 2:16
  Jonathan: So disability's always been a part of my life.
• 2:20
  Jonathan: I thought I wanted to be an academic.
• 2:22
  Jonathan: Um, I did um an undergraduate degree in history and geography, studied a bunch of languages, and I did uh a first master's right after undergrad, a one-year master's in the UK, and I realized, wow, academia is not for me.
• 2:38
  Jonathan: And I came, I came back to the US.
• 2:40
  Jonathan: I'm originally from the New York area.
• 2:42
  Jonathan: Um, like many New Yorkers, I uh talk quickly and a lot with my hands.
• 2:47
  Jonathan: Um and my one of my first days in my first quote-unquote big boy job in New York City government, I I said, wow, none of this stuff's accessible.
• 3:00
  Jonathan: And the response was basically, we're an underfunded local government agency.
• 3:05
  Jonathan: So that's part of your job now.
• 3:06
  Jonathan: And so um I really fell in love with accessibility.
• 3:10
  Jonathan: I worked in local government.
• 3:11
  Jonathan: Um, I went back to grad school and did a second master's on urban plan and urban planning with a focus on age and disability.
• 3:19
  Jonathan: I did a lot of research on accessible restrooms.
• 3:21
  Jonathan: I did a lot of research on accessibility for people living with dementia.
• 3:26
  Jonathan: I worked for the federal government for a few years.
• 3:28
  Jonathan: And now I'm a consultant.
• 3:30
  Jonathan: I work with clients across North America on different things related to accessibility, uh, digital accessibility, cognitive um accessibility.
• 3:38
  Jonathan: Um, sometimes OCD comes in.
• 3:40
  Jonathan: Um, but when it comes to OCD, it's really, you know, with autism, I often is adject that autism is not my spicy disability.
• 3:48
  Jonathan: Um, but I also often bring in my own experience as an autistic person, particularly sensory disability and sensitivity to light when I'm talking in my professional context.
• 3:59
  Jonathan: I don't do that with OCD as much, and we'll go into um there's not really a good reason why, but you'll as over the course of the episode you'll hear a bit more about my experience with OCD.
• 4:10
  Jonathan: And it's the way the way that is different.
• 4:13
  Jonathan: And then separately, just like every other person with a disability, I'm not just a disabled person.
• 4:18
  Jonathan: I love reading, I love cooking.
• 4:20
  Jonathan: I have a food blog called Flavors of Diaspora.
• 4:23
  Jonathan: Um, I live in Maryland with my husband.
• 4:25
  Jonathan: We collect uh stuffed animals.
• 4:27
  Jonathan: We have over 80 at this point.
• 4:29
  Jonathan: So yeah, that's a little bit um that's a little bit about me.
• 4:32
  Taylor: Uh I'm not a huge foodie, uh, but I do eventually want to get better at cooking.
• 4:37
  Taylor: Um, I knew you're probably not gonna like this, but I'm a huge microwaver.
• 4:41
  Jonathan: There's actually there's nothing wrong with the microwave.
• 4:45
  Jonathan: And I think both from um, you know, there's obviously the disability perspective that for many people that is that is that is something that's more accessible.
• 4:54
  Jonathan: There's also the we are all very busy people.
• 4:57
  Jonathan: There's an incredible, and this is going quite often, um, OCD, there's an incredible um food writer named Rachel Lauden, L-A-U-D-A-N, who wrote um a really seminal piece back in 2001 called A Plea for Culinary Modernism.
• 5:14
  Jonathan: And what her point is, is that we should not be advocating for everyone to cook everything all the time.
• 5:20
  Jonathan: But what we need to advocate for is high quality industrial food, high-quality processed food, because things like the microwave, the ad hot water, are things that actually liberate a lot of people and really help a lot of people actually eat eat better and eat at all, especially if they're working, especially if they're care if they're caretaking or things.
• 5:44
  Jonathan: So you I actually talk about on my food blog that modern is modernist food is important.
• 5:49
  Jonathan: And sure, sometimes I'll cook things from scratch, but sometimes I just go for a test in peanut butter too.
• 5:55
  Jonathan: There's no shame.
• 5:56
  Taylor: Nice.
• 5:56
  Taylor: That's really cool.
• 5:57
  Taylor: And uh I think that's helpful for me to know like it's it's okay not to be a fancy chef in the kitchen every night.
• 6:05
  Taylor: And I also do appreciate a very simple PBJ.
• 6:09
  Taylor: I think they're they can be undervalued as we get get older.
• 6:12
  Jonathan: And it's actually a good sag into how we think about OCD.
• 6:15
  Jonathan: And obviously you'll go into questions, but a lot of the time when we're thinking about OCD, it's not just about, say, the disability or the condition or what the person experiences, but also these are also always interlaced with whatever society asks of us.
• 6:33
  Jonathan: Um you know, the a lot of times, you know, we are live in a society that, you know, puts unreasonable expectations on everyone when it comes to things like food or exercise, and we're all just people.
• 6:48
  Jonathan: And I think that's something where sometimes when someone has a certain experience, those expectations can collide with that experience in ways that puts a lot of pressure on people.
• 7:04
  Jonathan: Um food's been a great outlet for me, but I know for a lot of people it's not.
• 7:09
  Jonathan: There's um we should all be culinary modernists.
• 7:12
  Taylor: All right.
• 7:13
  Taylor: Um so back to OCD.
• 7:15
  Taylor: Uh you were mentioning how you got that diagnosis when you were younger.
• 7:19
  Taylor: So, how did that affect like the early years in the schooling process and even in your home life?
• 7:25
  Jonathan: So uh for background, um, I'll talk a little bit about what OCD is.
• 7:30
  Jonathan: And OCD is a mental condition that in which there are repeated um unwanted thoughts around certain fixations that are what oftentimes folks call obsessions, and it's sometimes compulsions to think a certain thing, do a certain thing, say a certain thing, or act in a certain way.
• 7:50
  Jonathan: OCD has levels of intensity.
• 7:53
  Jonathan: Some people will say severity, but there's some debate about that.
• 7:56
  Jonathan: I'll just say intensity.
• 7:57
  Jonathan: Um, you know, for some folks, it's very uh quote unquote um low level, low simmering.
• 8:04
  Jonathan: Um, for some people, it's a huge part of their lives.
• 8:07
  Jonathan: Um and for most people, it varies.
• 8:10
  Jonathan: And there's oftentimes um a lot of rough times that can be attached to that as a result, because again, these are unwanted and oftentimes the compulsion is not done, or if there's a continued obsession or fixation on something, it can actually really affect people's quality of life if it's unwanted and especially negative thoughts.
• 8:30
  Jonathan: I um my fixations have historically been on really two primary areas.
• 8:38
  Jonathan: One is um sleeping, getting enough sleep, um, getting sleep at all, this an obsessive thought that something horrible will happen if I don't sleep.
• 8:49
  Jonathan: Um really actually three main areas.
• 8:52
  Jonathan: Um the second one is timeliness.
• 8:55
  Jonathan: Um, you know, some people get very um particular about time, but I would say I often have would have these obsessive thoughts where if I'm not on time, I have to punish myself somehow or do something somehow, or it makes me a bad person.
• 9:11
  Jonathan: And so a lot of things end up got getting structured around being on time for things.
• 9:16
  Jonathan: Um and the third the third one is also um I did as an adult develop more of an uh obsessive focus around uh eating enough and oftentimes forcing myself to eat when I wasn't hungry because it was the quote unquote right time to eat, wrong time, wrong time to eat, um, and oftentimes making myself eat more than I actually wanted to because I needed to quote unquote eat a certain amount.
• 9:41
  Jonathan: Um I think people have very different expectives on that.
• 9:44
  Jonathan: So when I was younger, in retrospect, the timeliness um issue and the um obsession about sleep probably started when I was like nine or ten.
• 9:56
  Jonathan: Like many autistic kids, I had a lot of trouble sleeping at night.
• 9:59
  Jonathan: Um, and I just remember it really kicking into force in high school.
• 10:04
  Jonathan: Um I went to a very academically competitive high school, and there was a lot of pressure all of the time.
• 10:12
  Jonathan: And even though my parents tried to defuse the pressure, they're not from the United States.
• 10:18
  Jonathan: Um, they thought that this was um American nonsense a lot.
• 10:23
  Jonathan: And they were right.
• 10:24
  Jonathan: Um, you know, just the obsession of, oh, what if I'm late for class?
• 10:28
  Jonathan: And then thinking of all of these cascading consequences, it got to the point where I would like also like hit myself or stab myself with a pen.
• 10:35
  Jonathan: Um or um, and then in and and and um uh later on as a young adult, sometimes hitting myself um on my knee with the phone.
• 10:46
  Jonathan: I actually have like permanent knit nerve damage in my knee as a result.
• 10:50
  Jonathan: Um, but when I was younger in school, it was oftentimes, you know, getting really, really obsessive about making sure, oh God, I had to get enough sleep at night before the test, and getting really upset if I was writing late for school and not always being the nicest person as a result.
• 11:05
  Jonathan: Um, a lot more of the OCD becomes spikier in my adult life.
• 11:10
  Jonathan: Um, but that's that was childhood.
• 11:13
  Jonathan: I was also somewhat socially isolated in some ways as a kid.
• 11:17
  Jonathan: I was a weird kid.
• 11:18
  Jonathan: Uh quote unquote, it was mainstreamed when I was in first grade, so which means I was put in the normal, quote unquote, normal school system instead of the system for kids with disabilities.
• 11:29
  Jonathan: Um and I was in uh my the the school system I went to school in was kind of socially toxic.
• 11:36
  Jonathan: So there were also other things happening when I was a kid that might have been OCD, but I've always chalked into my brain to nothing to do with disability and just being in a like a really weird school.
• 11:47
  Jonathan: Um, because when I was in college, I made a lot of friends and had a real started having a really rich social life.
• 11:53
  Taylor: All right.
• 11:53
  Taylor: So we were talking about the transition into college and how different that social part of your life was.
• 11:59
  Taylor: So can you tell us more about that?
• 12:02
  Taylor: Like what do you think made it?
• 12:04
  Taylor: I don't want to say necessarily easier, but maybe more natural to branch out and meet new people.
• 12:11
  Taylor: And maybe did you feel more free to be yourself?
• 12:15
  Jonathan: Or absolutely.
• 12:16
  Jonathan: And this ties in with the fact that I'm also autistic.
• 12:19
  Jonathan: I went to the University of Chicago, very prestigious research university, and known for being quote unquote socially awkward, which really should be read as tons of autistic people.
• 12:29
  Jonathan: It's changed since and uh it's gotten a good deal more expensive since I went.
• 12:33
  Jonathan: But um was really great is that there were other folks like me, including other folks with OCD, which was nice, um, because I got I got my formal diagnosis the summer between high school and college.
• 12:47
  Jonathan: Um, and uh when my sleep anxieties were really coming to a head.
• 12:52
  Jonathan: And it could be like if I couldn't sleep, like if I was having trouble falling asleep, it would feel like the world was falling apart.
• 12:59
  Jonathan: And ironically, eventually I would fall asleep, but it was still real this really rough, rough time for me.
• 13:07
  Jonathan: Uh that you know, coming up until you know I went off for college.
• 13:12
  Jonathan: Um, but I think what was really um helpful was the fact that I wasn't the only person, and I was also in an environment where I could be more myself, where I could also then address the OCD a bit better.
• 13:27
  Jonathan: Um, and at all.
• 13:29
  Jonathan: And I mean I would have had to either way because that I now knew I had OCD.
• 13:34
  Jonathan: There was something a fact that I wasn't going to need to sit with.
• 13:37
  Jonathan: Some people ignore it, but no, it's not the kind of person I am.
• 13:41
  Jonathan: Um and so with that first start, you know, I had other I now had friends who shared my interests in languages, in history, other folks who had kind of been the quote unquote nerds in their high school and not the cool kind of nerd.
• 13:57
  Jonathan: And um other folks who were very interested in very odd specific topics.
• 14:03
  Jonathan: Um, you know, and um, you know, I did have a number of OCD flare-ups in college.
• 14:11
  Jonathan: Um some uh I don't want to talk about on a podcast, but I was in a relationship where some bad things happened to me.
• 14:18
  Jonathan: Um that caused a flare-up, and then I had a bad roommate situation that also caused a flare-up, and both of those were affecting sleep at a university where people were oftentimes very proud of pulling all-nighters.
• 14:32
  Jonathan: So it was a little bit strange, but at the same time, I had that support network that I could speak with.
• 14:38
  Jonathan: And it was also in some ways, also um, the things I would obsess over were not as, or my obsessions and compulsions on timeliness were not always as uh loud in some ways because there were so many deadlines that it was also something where it almost went away just because there were lots of things to be on time for almost.
• 15:07
  Jonathan: And I I was on time with my assignments and everything.
• 15:13
  Jonathan: But where college also got interesting is um I'm Jewish.
• 15:16
  Jonathan: I grew up in a Jewish household.
• 15:19
  Jonathan: Um I'm politically quite left wing, especially on Israel-Palestine.
• 15:24
  Jonathan: Um and growing up, I wasn't quite as involved in the Jewish world because the Jewish world was very um the Jewish world was much more politically right wing and still and in many ways still is.
• 15:39
  Jonathan: Um and also I was in the closet.
• 15:41
  Jonathan: I'm also gay.
• 15:42
  Jonathan: And I can't when I came out in college, I also kind of started taking the plunge and going to the services, and I became very fairly religious pretty quickly.
• 15:51
  Jonathan: And something that I learned in college as well was, you know, being around uh other religious folks in um a lot of traditional Judaism, there are a lot of rules to follow, and a lot of people get very fixated on following the rules in a certain way.
• 16:06
  Jonathan: I realized in retrospect, it was I was realizing it was bringing out aspects of like accessions and compulsions, like, oh no, what would happen to me if I did this thing on the Sabbath?
• 16:19
  Jonathan: There are a lot of things that in traditional Judaism you're not supposed to do on the Sabbath.
• 16:22
  Jonathan: It's called Malacha.
• 16:23
  Jonathan: They're um uh literally meet it's translated as work, but there are 39 different categories of things that you're quote unquote not supposed to do.
• 16:31
  Jonathan: I'd grown up with a looser version.
• 16:33
  Jonathan: I now follow kind of a very, very loose version of that, and that I won't do paid work on the Sabbath or on Jewish holidays.
• 16:40
  Jonathan: But that was something also where I was aware, oh, I I do have this thing where sometimes I can have these fixations where I am compelled to do things that either make me miserable or aren't healthy for me, or I develop these strange uh things around that.
• 16:59
  Jonathan: But it was also because I was I had other people around me where, you know, some you know, a friend could be like, this is not healthy for you.
• 17:06
  Jonathan: And that was really um, really helpful.
• 17:10
  Jonathan: One thing with the um but one thing also with the uh sleep thing is that this is where I also realized that it was going to take a lot of work.
• 17:18
  Jonathan: Um there are a lot of things uh in the Jewish world that rely on um times that are a bit different from mainstream Christian society.
• 17:29
  Jonathan: A lot of times, especially in the summer, things are based on when the Sabbath starts and ends.
• 17:33
  Jonathan: The Sabbath starts 18 minutes before sundown and ends 42 minutes after sundown the next day.
• 17:39
  Jonathan: And during the summer, that can get quite late.
• 17:41
  Jonathan: During the winter, that can be quite early.
• 17:43
  Jonathan: And being able to make sure you don't need to buy anything for 25 hours uh by the time that in Chicago that could be 4 p.m.
• 17:52
  Jonathan: during the winter on a Friday, that creates a whole other set of deadline because then it's like you're not just you're not just disobeying yourself and your brain, you're disobeying God.
• 18:04
  Jonathan: And that was something that became uh very interesting, but it it started also messing with my sleep, and then I would have the sleep obsessions, and it was a strange experience.
• 18:15
  Jonathan: But um, I made a lot of really lifelong friends in college.
• 18:19
  Jonathan: I loved being in school, um, and I I learned a lot.
• 18:23
  Taylor: Um, so you were talking about languages.
• 18:25
  Taylor: Um, obviously you speak English fairly well.
• 18:29
  Taylor: Uh and I know you also speak Spanish, right?
• 18:32
  Taylor: And uh any others?
• 18:33
  Jonathan: Yeah, so I speak English, Spanish, French, and Hebrew fluently.
• 18:37
  Jonathan: Um I used to speak fairly good Mandarin, but it's gotten incredibly bad over because I haven't really used it in 10 years.
• 18:43
  Jonathan: I have varying levels of ability in Afrikaans, German, uh, Turkish, and Norwegian.
• 18:48
  Jonathan: Um I can struggle through Dutch, Danish, Swedish, and Yiddish Czechs because they're so close to languages I speak.
• 18:54
  Jonathan: Um I speak a bit of Portuguese.
• 18:56
  Jonathan: Um, this is something that it's just like a random fact about me is that like I I can carry on a I can carry on at least a basic conversation in eight or nine, but um the one the four that I have on my resume are English, French, Spanish, and Hebrew.
• 19:12
  Jonathan: But that's something that, you know, it's it's it's interesting because when you learn a language, you oftentimes have to be very un uh brave and just say things even though they might be wrong.
• 19:24
  Jonathan: And that's something I've gotten very used to over the course of the year uh over the years.
• 19:30
  Jonathan: I arrived in college having some level of ability in six languages, which was very lucky and I had a lot of privilege to have access to learn those things.
• 19:38
  Jonathan: Um and you know, it's like I I can confidently go in and start speaking, even if I'm not sure if all the grammar or the words are correct.
• 19:47
  Jonathan: But when it comes to being on time, like I can go into complete meltdown if I'm late for work, or now that I work for myself, if I'm later than I want to be.
• 19:59
  Jonathan: For the schedule I set for myself downstairs in my own house.
• 20:03
  Jonathan: So it's like this really weird contradiction that one has to live with.
• 20:07
  Jonathan: That's very that's very interesting.
• 20:09
  Taylor: Um, but I'll start with um with uh earlier you were talking about flare-ups.
• 20:16
  Taylor: And would you be able to and more importantly, would you mind explaining what exactly that looks like for you?
• 20:24
  Taylor: And just um would imagine that varies greatly depending on who you talk to.
• 20:29
  Jonathan: Yeah, it varies depending on who you talk to and who what they call it.
• 20:34
  Jonathan: I think someone who's coming from a quote unquote more mad pride perspective might call it something different.
• 20:39
  Jonathan: A lot of folks in the OCD world, and then before I go into myself, really rely on the medical model.
• 20:45
  Jonathan: A lot of people feel that they want their OCD to be fixed.
• 20:48
  Jonathan: I often feel that way.
• 20:50
  Jonathan: It's not if I come back tomorrow, different person, autism, yeah, I'll keep that.
• 20:54
  Jonathan: OCD, let's be honest, not great.
• 20:58
  Jonathan: I want to keep it for myself.
• 21:00
  Jonathan: Um but in terms of that, uh, what I call a flare-up is when my OCD becomes a lot more intense.
• 21:06
  Jonathan: It's oftentimes there are a couple of different things that can trigger it, big transitions.
• 21:11
  Jonathan: Um, before I went to college, before I went to my first master's, uh, which was in the UK, um, the six months or so after my dad passed away very suddenly while I was living in the UK and I was away from home and grieving.
• 21:25
  Jonathan: Um before I um and when uh during COVID, um I had a really, really, really bad flare-up.
• 21:34
  Jonathan: And then um actually uh one that really um star it started in the biggest one I've had and the longest one was from about the end of 2023.
• 21:46
  Jonathan: My husband and I bought our a house, a townhouse, which is a choice location, and we're very lucky to be able to do so.
• 21:52
  Jonathan: But all of the stress of moving and planning and such, somehow probably that stress um made a lot of my symptoms much more intense um or characteristics if you want to use less medical language.
• 22:07
  Jonathan: And then that continued because here in the US we had an election and um I was a federal employee at the time and I realized I wanted to get out of federal government.
• 22:18
  Jonathan: So there's also all of that stress that was coming in.
• 22:21
  Jonathan: A flare-up for me, because I have a less, somewhat less intense form of OCD, is that there are still lots of things in quote unquote day-to-day life that I'm doing.
• 22:32
  Jonathan: You know, it's like some of the times I've had flare-ups were times that I was incredibly productive in school or incredibly productive in work or I went on cool trips or doing cool things with my friends.
• 22:47
  Jonathan: But for example, instead of say maybe like you know we all have trouble sleeping at night, you know, you know, instead of maybe being able to sort of like remind myself, oh, it's just a night that decaf coffee might not have been decaf at the end of the day and doing things to calm myself down, I'm catatonic in bed, freaking out because oh my God, if I don't sleep, I'm going to die.
• 23:11
  Jonathan: Now this a lot of these obsessions don't make sense.
• 23:14
  Jonathan: Uh they a lot of obsessions are not necessarily I don't like the word rational, but um I would say are on things that are highly improbable.
• 23:22
  Jonathan: Lots of people don't get us don't get asleep over the night, speak to any parent of a newborn and you'll hear that pretty much instantly.
• 23:31
  Jonathan: But there's that obsession.
• 23:34
  Jonathan: And then there's sometimes compulsions.
• 23:36
  Jonathan: Mine, I don't have a strong compulsion of things that I need to do.
• 23:40
  Jonathan: But oftentimes if I think certain things or stuff I used to have to tap my thigh uh three, nine or 27 times, depending on what it was.
• 23:48
  Jonathan: And it had to be exactly one of those numbers.
• 23:51
  Jonathan: I don't actually remember why.
• 23:52
  Jonathan: And during a flare-up I would be doing that maybe 30, 40 times a day, 50, 60 easy.
• 23:57
  Jonathan: During a non-flare up, I can't even remember the last uh last time I did that.
• 24:02
  Jonathan: I'm not in a flare up right now.
• 24:04
  Jonathan: So it's this these like sort of these interjecting um interjecting interruptions.
• 24:12
  Jonathan: And then what happens as a result from that is that it starts having a cascading effect.
• 24:17
  Jonathan: So for example, being late for work or being late for something is something that, you know, normally I can just ask someone say, hey, I'm running late, even if even if they think it's ridiculous that I'm not running, you know, they don't think I'm running late.
• 24:31
  Jonathan: I developed a reputation at every workplace I was that I would text people I was running late and we had a flexible arrival time, which is completely so it makes you act in strange ways that other people don't always understand and not necessarily from the disability perspective, but it's like they don't necessarily know that this is an OCD thing.
• 24:49
  Jonathan: You might not even realize it's an OCD thing.
• 24:51
  Jonathan: But it starts because there's just like that like this additional stress that comes in, it starts, you know, affecting you know how nice you are or how how much you're able what kind of things you're able to do as you interact with people or how much energy you have.
• 25:08
  Jonathan: Oftentimes I would feel so like overwhelmed like from the anxiety from having not slept and then potentially being late for work and then having forced myself to eat and having a stomachache even though I didn't because I ate the thing that I didn't want to eat.
• 25:24
  Jonathan: That it was um you know it takes that energy from things that I wanted to do.
• 25:30
  Jonathan: You know, say doing some you know writing writing elected officials on an issue or um or things that I I needed to do or quote unquote wanted to take on the obligation of doing you know like doing more of the chores around the house or doing specific chores around the house or doing them specifically as often.
• 25:54
  Jonathan: That's how it is at least for me.
• 25:57
  Jonathan: Now I have some friends who have had much more uh severe obsessive compulsive disorder or much more intense obsessive compulsive disorder where for example um friends of mine who have obsessive compulsive disorder on contamination might wash wash their hands so much that their hands start cracking and they start bleeding from their hands they have to work lots.
• 26:18
  Jonathan: Or um I knew someone who took a two and a half hour shower once to purify themselves after something happened.
• 26:24
  Jonathan: And those things really start to disrupt people's lives.
• 26:27
  Jonathan: My OCD has not been quite uh when things have gotten more intense have got has not been um as disruptive I think the most disruptive thing is that sometimes being late for things or not sleeping I would hit myself on the knee or the elbow.
• 26:43
  Jonathan: And that's that's painful but it was also mine's much slower.
• 26:48
  Jonathan: But that's and then there are some people for whom it's much less uh intrusive when things go up.
• 26:55
  Jonathan: So for example they might just be washing their hands a bit more if they have a contamination fixation or they might you know just instead of like immediately trying to rush in and change the subject when a quote unquote bad topic comes up, they might just suddenly become very silent in a conversation.
• 27:12
  Jonathan: So it really varies.
• 27:13
  Jonathan: Um the other thing that can uh in my experience trigger um trigger these flare ups is if you're if it's if something happen if an obsession happens after and you haven't dealt with it for a while, if you haven't experienced it for a while, just even the the anxiety from that alone sometimes it feels it can cascade a little bit.
• 27:38
  Jonathan: Oh wow that's unfortunate it seems like a vicious cycle can be but there are ways that people address it people that people uh that people navigate it right um we'll talk about a little bit of those um and some of them are pretty controversial both within the disability community and then what works you've met one person with OCD you've met one person with OCD it varies so much and I can only speak as someone who you know has a highly educated person with a professional job and access to resources and a less intense form of it.
• 28:17
  Jonathan: It's very different for folks in other situations.
• 28:20
  Jonathan: And I also because the time and sleep thing is also a somewhat less common manifestation um a lot of times OCD shows up much more in terms of contamination or um collecting and holding on to objects uh a lot of folks who are quote unquote hoarding uh actually have a flavor of OCD um it's like I can only speak from my own experience of course likewise thank you and I think speaking for folks who are experiencing hoarding you know there's a lot of things that you know there are misconceptions people have about OCD.
• 28:57
  Jonathan: Sometimes they're based on a granule of truth you know being OCD about things being exact some people with obsessive compulsive disorder will have compulsive thoughts or obsessions about things being exact in a specific way.
• 29:09
  Jonathan: But it here's the thing it's an unwanted thought it's an un un unwanted desire.
• 29:15
  Jonathan: Some people want to be exact you know I think of you know a lot of the engineers of med who are measure twice cut once people that's a desired thing that's a quote unquote learned behavior.
• 29:27
  Jonathan: A lot of times um you know that's that's a difference and when people describe themselves as an OCD for being exact I actually don't correct them that much because I I feel that you know if they're feeling pressure around that that's a point at which they can empathize with someone like me or someone else who has OCD.
• 29:47
  Jonathan: Sometimes it's folks you know like oh they can't you know like highlighting uh how quote unquote ridiculous it wor looks like for example the TV show monk or other folks there's a lot of kind of like clownification of it that's not comfortable and I but I think that speaks to broader ways of how we discuss mental health in our society.
• 30:09
  Jonathan: But sometimes when it becomes almost like treat people treating it as a carnival sideshow that's when I get really concerned and I've never been a hoarder I've never experienced um what it's like to be someone who hoards or someone who has that compulsion to collect and retain items collect and retain objects trying to I guess depathologize it and as you can see I'm working on that language myself.
• 30:35
  Jonathan: But I think the a lot of the a lot of the a lot of the um ways that it's become like cardeval sideshow for many folks of like oh look at this look at that look how gross it is look how things it is it actually pushes off I think a lot of people from seeking help because they're worried about the stigma.
• 30:56
  Jonathan: And um you know I think I think we can have empathy for folks in that situation and also recognize that oftentimes it people end up in dangerous situations because of it because there's say rotten food as I've helped someone who is experiencing this cleanup or um oftentimes electrical equipment that then crosses there's a fire risk if there's an emergency folks can't get out and oftentimes they almost folks almost feel imprisoned by it.
• 31:28
  Jonathan: And so navigating that path between empathy and helpfulness you know we need to recognize that a lot of that a lot of that worry is built up by the cultural stigma.
• 31:39
  Jonathan: I feel like I can be very open a lot of the times about being autistic from the get-go with folks.
• 31:44
  Jonathan: I only started being much more open about having OCD three years three three years ago uh when I just mentioned it casually on the stage is I have workplace accommodations around my OCD, around being able to um have a flexible arrival time so that I wouldn't be quote unquote late um and then I had some accommodations in school and I decided to just disclose it kind of out of the blue at a conference presentation.
• 32:13
  Taylor: But the part of that was a stigma of like oh what are what are folks going to think even in the disability world so are you looking back on that I had something else but that triggered that for me like looking back on that moment where it just was a sperm moment thing to disclose that are you gl glad you did that?
• 32:31
  Jonathan: I think so because the for two reasons one is that you know um almost baptism by fire.
• 32:38
  Jonathan: It's the you know it's like yeah I have OCD um this mental health condition that a lot of people think they know about and don't quite know about a lot of people with OCD will try to speak for all of us but you know one person's experience um and getting more comfortable with it I ended up doing actually a lunch and learn on OCD with um with my world workplace about well what is it like and what are do different people think um but the other thing is it sparked a lot of conversations with other conference attendees some other folks said hey I have OCD too and I ended up having conversations with people about it that really made me think about OCD in a different way um I learned from one conference attendee that it's something like one out of four people with OCD are also autistic.
• 33:28
  Jonathan: And so really thinking about that connection a lot more and also how OCD is often culturally inflected.
• 33:36
  Jonathan: One person was um who had also spent time in more traditional Jewish communities was telling me about how a lot of the times people with um OCD get gravitate towards these um towards um more traditional manifestations of Judaism because they it almost feeds into like there are rituals around certain things of what if what doesn't happen.
• 34:06
  Jonathan: But then on the flip side in our community a lot of people end up becoming what we call mahmir um and that means really strict because they start developing almost an obsession about well if they don't follow it to the letter of the law or to the letter of whichever interpretation because we're not a centralized religion um we don't have a catechism or a Catholic church.
• 34:34
  Jonathan: We've got a lot of debate there.
• 34:35
  Jonathan: If they don't do everything exactly and perfectly something horrible is going to happen.
• 34:39
  Jonathan: Even if in the interpretation in the Talmud this is seen as a somewhat less problematic thing to do.
• 34:47
  Jonathan: So there's this interesting um and that all started from that conference presentation where I think being open about it meant that I actually learned a lot more about myself and learned how to be a better advocate for other people living with OCD.
• 35:02
  Taylor: That's incredible and and that's something as an advocate myself I'm always trying to generally encourage people that yeah it can be scary to make that make take that leap and just be honest about your situation but and for me like since also having hidden disability with with blindness I didn't have to necessarily disclose it and even in certain environments but once I started to not necessarily embrace it but just disclose it I realized it was really better for pretty much everyone involved it made easier for people to understand how they might be able to assist me.
• 35:44
  Taylor: It made me feel safer um knowing someone else knew what was going on and if something went like happened and they would understand and so I think it's great that you felt that experience as well and hopefully anyone listening can can see your experience and a little bit mine as well and see that a lot a lot of good can really come from just having those open conversations.
• 36:10
  Jonathan: Definitely and again it's always culturally um dependent you know I think um I now kind of went back to the more quote unquote liberal denominations of Judaism that I grew up with although I'm much more quote unquote observant within those I go to synagogue every week.
• 36:27
  Jonathan: But I know folks who are in more traditional Jewish spaces that don't always feel comfortable coming out because there's a lot of things within the Jewish community um separately folks from other cultural backgrounds where either there's a stigma or people conceive of their disability disability in a different way in and of itself and it's not necessarily I am OCD or I have OCD but what does it mean for the obligations they take on to the rest of the community they might not feel that it's relevant or what disclosure looks like might be different.
• 37:03
  Jonathan: But definitely definitely for sure and I think a lot of the times in the OCD world there are sometimes voices that are very loud that say OCD is this way OCD is that way and I think disclosure helps us all remember that there's no one way that people have OCD there's no one way that people are autistic or blind or whatever.
• 37:28
  Jonathan: So I think disclosure is helpful there too because we're we end up building it for everyone.
• 37:33
  Taylor: But again culturally and community dependent absolutely and I'm I'm glad you pointed that out that's really not a topic we talk about much but I think it's interesting thinking about it in that perspective how disability not necessarily disability etiquette but maybe but these things overlap with religion that's something new to think about and I'm glad you brought that up.
• 38:00
  Jonathan: Sorry even within religion it can really vary I mean there are um in the Jewish community um there's an idea of um any of these rules can be superseded by essentially health and safety that say saving or preserving life or health is more important than um than following any of the rules.
• 38:26
  Jonathan: Now sometimes this is very becomes a very public fight uh for example if the life of the health of the mother is at risk um abortion is actually mandatory in Jewish tradition and um and uh recent anti-abortion laws means that it's essentially actually a religious freedom fight for Jews.
• 38:45
  Jonathan: But even within within the disability context it also means that a lot of folks aren't necessarily aware of the fact that there's a lot of different things in Jewish tradition that goes around this.
• 38:56
  Jonathan: So one is for example fasting on fast days such as Yom Kippur.
• 39:01
  Jonathan: There are two traditionally six fast days a year most folks only end up doing one or two uh Yom Kippur is the big one um but because I have a history of disordered eating from the OCD, um I have what's called a hatter um which is essentially I have been ordered by a rabbi never to fast again.
• 39:19
  Jonathan: And so for me one of the big things is that even if say I was to have no OCD for the ra um starting tomorrow, that's still always a part of me because the rabbi's position is that because I have a history of disordered eating it is not safe to ever ask me to fast.
• 39:37
  Jonathan: And many rabbis will actually now in that context their concern is not their first concern for accessibility isn't necessarily how do we make the service more welcoming.
• 39:48
  Jonathan: It's their first thing, especially for Yom Kippur, the holiest day of the Jewish year, one of the holiest days, that's a controversial statement right there.
• 39:57
  Jonathan: I know the Jewish listeners, there's I'm gonna get something from this concern is we need to make sure that if there is any reason that someone cannot take on an obligation such as fasting or such as some of the other traditional obligations, we have to make sure that folks do not feel pressured to do so.
• 40:18
  Jonathan: That's what many folks feel um talking with Muslim friends, my Palestinian friend was telling me about how there are a lot of things in Islamic jurisprudence that cover um if you're not able to fast, you shouldn't fast.
• 40:34
  Jonathan: And um Islamic law actually has a lot Islamic scholars have done a lot more thinking about these situations in some ways than Jewish scholars and it was actually really interesting to hear that perspective of that there are a lot more codified exemptions for fasting than there are in Jewish law uh in Jewish tradition.
• 40:53
  Jonathan: But yeah it definitely intersects with uh religion in um in very interesting ways separately the rate the I don't have any data for this but there's a very big uh community of people who are Jewish and have OCD so it's like I'm not even the first person dealing with it.
• 41:10
  Jonathan: So it that is that has been helpful.
• 41:12
  Taylor: Very interesting and I like I never even thought about that because I mean I'm not very religious myself so I never really think about it in that context.
• 41:22
  Taylor: But it's really it's fascinating to think about certain religions being more or less accessible than others.
• 41:30
  Jonathan: Yeah or accessible in different ways.
• 41:33
  Jonathan: I think every people in every faith community try to be accessible but I always I'm always interested in how that manifests um you know it's and also how that intersects with the other um other things.
• 41:49
  Jonathan: And then there's also always communal drama people are people are dramatic.
• 41:53
  Jonathan: Earlier you had mentioned um part of your OCD journey about the eating disorder is that something you'd be wanting to shed some light on a little bit and it's actually a good sag into um also I guess treatment or addressing OCD is that um I my dad, God rest his soul probably had some disordered eating and that is something that probably passed on to me.
• 42:20
  Jonathan: My dad uh was very obsessed about like is food healthy or food not healthy?
• 42:25
  Jonathan: For me it carried over into um ideas that I had to eat or not eat.
• 42:32
  Jonathan: And this is something that also probably relevant is that uh my grandmother survived the Holocaust and there's a lot of discussion in the Jewish world around all of the ways that the Holocaust continues to affect people.
• 42:46
  Jonathan: And I think we're gonna we you see this with other communities that have faced genocides.
• 42:52
  Jonathan: But a lot of sh a lot of folks develop fixations around food that then get passed on to their children and grandchildren.
• 43:12
  Jonathan: And so like you know this like obsession like if I don't eat enough now something bad is going to happen or I'm like things aren't going to happen.
• 43:20
  Jonathan: So it force myself to eat more than I wanted I like what I thought was the correct amount of food or forcing myself to like eat at specific times even if I wasn't hungry or not occasionally not letting myself eat at another time because oh my God it might um affect my sleep.
• 43:40
  Jonathan: That one I was able that part I was able to address but it took um a lot of work to do that.
• 43:48
  Jonathan: And I think what it finally came down to was that um I had gained some weight after all of this and I was feeling kind of sluggish.
• 43:55
  Jonathan: And again weight weight loss is not for everyone you know if if weight loss is not safe for you It's not something that's safe for you.
• 44:01
  Jonathan: Do not do that.
• 44:02
  Jonathan: But I I had realized like it wasn't like, oh, I'm not eating responsibly.
• 44:09
  Jonathan: It was like, I'm literally forcing myself to eat when I'm not hungry.
• 44:13
  Jonathan: I'm forcing myself to eat because my brain is saying, oh, you have to eat now, even if the rest of my body is like, no, we don't want to eat now, or have a snack after workout, even though, even though every time I eat after I work out, if I do that immediately after I work out, I feel like I'm gonna be sick.
• 44:31
  Jonathan: But it's like, oh, it's a thing to do.
• 44:32
  Jonathan: And so this is a good segue into a broader way.
• 44:36
  Jonathan: There are different ways that people address and treat their OCD.
• 44:39
  Jonathan: And this one is the most common one, is actually very controversial in disability community.
• 44:44
  Jonathan: It's called cognitive behavioral therapy.
• 44:46
  Jonathan: And it's it's a type of therapy that helps folks essentially structure their thoughts.
• 44:53
  Jonathan: Now, a lot of people don't like this because they feel it's not disability affirming, but because it is um, you know, quote, changing the way that you think or, you know, make trying to make us more neurotypical.
• 45:05
  Jonathan: I personally disagree because I'll be quite frank, is that when I first started getting a CBT in high school, it it was probably the difference between it was probably the difference between me being able to pass my first year in college and not it was probably when after my dad died when I had a really bad OCD flare-up, it was probably the difference between addressing the fact that I was sometimes self-harving if I was late or not getting enough sleep and not, and that could have gone really south really quickly.
• 45:37
  Jonathan: Um I'm also lucky enough to work with a therapist who doesn't see my autism as something that also needs to be fixed, but actually as something that we can use as the as the basis for some CDT for some of these things of thinking of thinking things.
• 45:55
  Jonathan: I like writing for like many autistic people.
• 45:57
  Jonathan: I really like written directions.
• 45:58
  Jonathan: I really like rituals, having things that we do to do that.
• 46:02
  Jonathan: And a separate point, my therapist pointing out that oftentimes something that might make OCD obsessions feel worse is if I'm not paying attention to uh things I might need as an autistic person, my sensory environment, or if I've been socializing with neurotypical people all day.
• 46:22
  Jonathan: It's there are there are things there as well.
• 46:24
  Jonathan: But oftentimes it was like really like trying to help, at least for the eating disorder, reset my relationship with food.
• 46:32
  Jonathan: Finding a nutritionist to help me with this because I didn't want to accidentally end up with like a health issue was really hard.
• 46:42
  Jonathan: I had the first nutritionist I met literally said to me, Oh, your OCD means that you're gonna be really good at adhering to this diet plan.
• 46:52
  Jonathan: My jaw dropped.
• 46:54
  Jonathan: I actually had to turn off the camera.
• 46:55
  Jonathan: This was a consultation on Zoom, and I actually filed a complaint with the state.
• 46:59
  Jonathan: I was like, oh my gosh, you should never say that to someone.
• 47:03
  Jonathan: Um yeah, the doctor who had referred me this nutritionist was so apologetic.
• 47:09
  Jonathan: She was like mortified.
• 47:11
  Jonathan: Um and it initially switched um doctors because the first doctor was like, oh, you're just eating too much.
• 47:16
  Jonathan: This is not disordered eating, you know, you just need to eat better.
• 47:19
  Jonathan: And it was like, I'm for I just literally told you I'm forcing myself to eat because of a mental health condition.
• 47:25
  Jonathan: And you're like, oh no, it's just, you know, you're eating too much diet.
• 47:28
  Jonathan: This is like diet culture bullshit, pardon my language.
• 47:31
  Jonathan: Um, but then finding a, you know, nutritionist who had experience with working with people with eating disorders.
• 47:36
  Jonathan: And it was like very clear, we're not, we don't want to be necessarily measuring calories or saying you need to eat this or that or this.
• 47:45
  Jonathan: We want to help build a healthier relationship with food for you because food is nourishing and should feel nourishing to you.
• 47:52
  Jonathan: And you like cooking and you like eating good food, and you shouldn't let this become a source of misery for you.
• 47:57
  Jonathan: Um, and working with her was really great.
• 48:00
  Jonathan: And, you know, it got to a place where now it's like it feels a lot more natural to say, oh, I'm not hungry, so I'm not really gonna eat now, or oh, I just want a salad.
• 48:13
  Jonathan: Or Taylor, like when I saw you for lunch, wow, I really should have had more for breakfast.
• 48:19
  Jonathan: I'm going to get a quiche.
• 48:21
  Jonathan: Um so um there's a lot there.
• 48:24
  Jonathan: And it's it's it's an interesting parallel with um how CBT generally works, is that also you're oftentimes exposure ex exposure therapy yourself to trick uh to quote unquote triggers a little bit, a little bit, a little bit.
• 48:39
  Jonathan: You don't want to necessarily go whole hog.
• 48:41
  Jonathan: Um but it's a little bit.
• 48:45
  Jonathan: So instead of um, you know, going through any of your compulsions around sleep, it's like saying this is my sleep obsession and and you know, let's see if I can go like five more minutes without doing any of my compulsive rituals.
• 48:59
  Jonathan: Or timing, instead of trying to be 15 minutes early, leaving with and risk in a reasonable sense, not for a job interview, but say it's just for coffee with a friend, but the risk that you might be late if the bus breaks down.
• 49:12
  Jonathan: Um but again, CBT isn't the right fit for everyone, especially I think for a lot of other autistic people, it can be very hard.
• 49:20
  Jonathan: Um, and a lot of practitioners are not very inclusive.
• 49:23
  Jonathan: And so there are other therapeutic modalities that a lot of folks do use that.
• 49:30
  Jonathan: I know that's how the eating disorder went, but that's also like the stuff I do with my therapist right now.
• 49:36
  Jonathan: Um yeah.
• 49:39
  Jonathan: And then I think sometimes, sometimes medication.
• 49:42
  Jonathan: Um, I take an antidepressant because low doses of antidepressants help people feel calm enough to actually go through that, or at least, you know, gives them give it's it's like when you make a cake, you know, uh a layer cake, you have a bottom layer of the cake.
• 49:57
  Jonathan: It's the bottom layer of the cake, so then you can continue icing or adding curd and then add another layer icing or curd or other fillings and so on.
• 50:05
  Taylor: Very interesting.
• 50:06
  Taylor: And uh something that we've done or I've noticed all throughout this series is I think pretty much every single person I've talked to, I've noticed at least one similarity in how we experience different things.
• 50:20
  Taylor: And uh one of the things I noticed in that area is I also have a weird relationship with food.
• 50:27
  Taylor: Um, for me, and not just with food, really with everything.
• 50:31
  Taylor: If if I don't see it, I forget about it.
• 50:34
  Taylor: And obviously having clerical blindness that can be tricky because um because I can see roughly, um, but if I'm not visually reminded like there are days like to give you an example, it is what 5 01 Eastern time, and I have not eaten today anything.
• 50:54
  Taylor: I just completely forget, and I just get engrossed in what I'm doing, and and it's I can't imagine it's healthy.
• 51:02
  Taylor: That there are many days I don't eat until like two or three in the afternoon.
• 51:06
  Taylor: Um, so maybe that's something I need to look into.
• 51:10
  Jonathan: And everyone has different relationships with food, and I mean, like mine became dis and it becomes disordered when it starts.
• 51:18
  Jonathan: You start forcing yourself consciously into things that are uncomfortable or unwanted.
• 51:25
  Jonathan: Um, a lot of eating disorders really also route, and just like OCD, a lot of people's obsessions with OCD come from the culture around them.
• 51:33
  Jonathan: You know, we live in a culture that prioritizes timeliness.
• 51:37
  Jonathan: Um we um in parts of the Jewish community, it is customary to be late.
• 51:43
  Jonathan: It's rude to be on time.
• 51:45
  Jonathan: But my ancestors were German and Lithuanian who are famous for being punctual in in the Jewish world.
• 51:52
  Jonathan: Uh similarly, in um you know, talking with um talking with folks who speak languages that have a lot of quote unquote registers.
• 52:02
  Jonathan: Those are you speak differently, it's how we speak differently, say if we're speaking to our boss or things.
• 52:06
  Jonathan: In some languages, it's grammatical.
• 52:08
  Jonathan: And oftentimes folks will obsess over which register they're using to speak with someone from and this is again anecdotal.
• 52:16
  Jonathan: I'm not a researcher.
• 52:17
  Jonathan: Um and it's similar with um food.
• 52:19
  Jonathan: You know, a lot of people develop eating disorders because we live in a society that um fetishizes thinness, that fetishizes a certain kind of body.
• 52:29
  Jonathan: That's why our work at accessible community still hacks exist because our society is still fixated on this.
• 52:35
  Jonathan: And we also live in a society that develops these weird um obsessions with certain certain things in food.
• 52:43
  Jonathan: I I was at a supermarket earlier today and they're selling protein water now, and I was just like, why?
• 52:48
  Jonathan: This is so weird.
• 52:50
  Jonathan: This is so odd.
• 52:51
  Jonathan: So all of this is then inflected by our own disabilities, by how we experience things.
• 52:56
  Jonathan: You know, for some folks, they if they see the food, they want to eat it.
• 53:00
  Jonathan: And for some folks, they need to see the food to be reminded to eat it.
• 53:04
  Jonathan: For some folks, it's, you know, they they they feel that what they see needs to be a certain thing, and then they need to eat what they see.
• 53:12
  Jonathan: Um and there are all sorts of ways in which disability affects um food.
• 53:18
  Jonathan: A few years ago, I actually got uh text interviewed for a blog post about how disability affects cooking and uh by a British food writer, and that was super duper cool.
• 53:30
  Jonathan: And she ended up writing a piece about, and I'll find it for you, about um what kind of food were we dreaming about during the pandemic?
• 53:38
  Jonathan: And she actually talked about my my experience as an autistic person.
• 53:41
  Jonathan: I'll put that in the show notes.
• 53:43
  Taylor: So earlier you were talking about coming from the federal government and that transition.
• 53:48
  Taylor: So now are you independent and is that experience with those time issues you were having earlier on with the OCB?
• 53:56
  Taylor: Is that does it help being able to be more flexible with your scheduling?
• 54:01
  Jonathan: Yeah, so I started my I became a consultant in I my last day in federal was April 2025.
• 54:08
  Jonathan: I took a buyout from the federal government because I didn't want to stay, and if they were paying me to leave, I was gonna I took that.
• 54:15
  Jonathan: And I had a few months to set up because the buyout meant I was getting paid through October and I started taking clients in August 2025.
• 54:23
  Jonathan: Um the flexibility has helped.
• 54:26
  Jonathan: I still sometimes get anxious if I'm uh running, if there's a chance I might be late for a meeting.
• 54:33
  Jonathan: But the fact that I can send an email and I've gotten much more comfortable saying, hey, it's okay, I'm gonna be late, and realizing that everyone else might have things that make them late too.
• 54:43
  Jonathan: That's something that I think it's really helped me realize, hey, you're not the only person that may be feeling a certain way about being late.
• 54:51
  Jonathan: And it really to confront it is like, you know, this might just be my brain being mean to me.
• 54:57
  Jonathan: Um I think it's been much easier to control my um, to like really confront my sleep issues because if I am having trouble sleeping, unless I have an early morning meeting, I do have one meeting every Thursday morning at 8 a.m.
• 55:12
  Jonathan: Um, I can always, you know, give myself a little bit of extra time in the morning.
• 55:18
  Jonathan: I got a couple of chains that I uh could at department stores, you know, those men's chains.
• 55:24
  Jonathan: And I actually figured out that, you know, if I'm beginning to have a thought, I touch the chain as a reminder of hey, uh uh this might be an obsessive thought.
• 55:34
  Jonathan: It's actually been working pretty well.
• 55:35
  Jonathan: Um but I think the flexibility is really helping.
• 55:39
  Jonathan: But also in all of this, you know, I think being a person with a disability, you also learn skills that people don't always realize is technical experience.
• 55:48
  Jonathan: And this is what we try to do in accessible community.
• 55:51
  Jonathan: And being a having an uh obsession and fixation and compulsions around timeliness for most of my life means that I'm pretty good at time management.
• 56:00
  Jonathan: So I can really, it's helped me accurately estimate how many hours this is going to take.
• 56:05
  Jonathan: And at the beginning of the month, they kind of schedule out what am I gonna be working on each day, blocking time, and having the flexibility to do that and to set my own boundaries has been really um, really helpful.
• 56:19
  Jonathan: Um and I think also just, you know, being um a bit more for being addressing the internal abilism, you know, like earlier I'd be like, earlier in my life it was also like, well, why can't I be late?
• 56:33
  Jonathan: Like, what's wrong with me?
• 56:34
  Jonathan: And now it can be like, you know, it's the OCD.
• 56:38
  Jonathan: What a bear.
• 56:39
  Jonathan: I can and it's it's with this flexibility, it's definitely been helpful.
• 56:44
  Jonathan: Um and now that I oftentimes am finding myself talking with other former government employees who are becoming independent consultants, um, you know, oftentimes being like being able to recognize like when might this be when might someone else by be, you know, feeling a certain kind of anxiety, a certain kind of pressure.
• 57:07
  Jonathan: That's been also helpful to recognize, like in myself, like maybe I don't need to set myself as ridiculous standards.
• 57:17
  Jonathan: Maybe I can I can pull back a little bit.
• 57:20
  Jonathan: But yeah, the flexibility has definitely helped.
• 57:22
  Jonathan: Um I think also a lot of folks really don't think about how their words land with other people.
• 57:30
  Jonathan: And that was particularly the case in government.
• 57:33
  Jonathan: Um, and it's one thing when it's like, you know, yes, a disability can affect that, but a lot of times in government you work with a lot of people that aren't necessarily good at being empathetic.
• 57:45
  Jonathan: And realizing that a lot of these, a lot of my flare-up was might might have also been coming from the fact that I was often working with folks that weren't thinking about the effects, and I wasn't necessarily saying, hey, I'm not able, asserting for act advocating for myself, hey, I'm not able to do this.
• 58:01
  Jonathan: My boss in federal government was incredible and helped me do that a lot.
• 58:04
  Jonathan: But I think also being out of an environment that was encouraging some of my OCD was is probably healthy as well.
• 58:11
  Taylor: That's a really good point about the empathy side of it.
• 58:14
  Taylor: And uh I feel like I I hear that quite a bit, and I definitely see that in myself.
• 58:21
  Taylor: And I'm sure you're well aware.
• 58:23
  Taylor: Uh, with with people with disabilities, oftentimes, especially later in life, if you attain one, it can be a little bit more prevalent because it happens all a sudden, all of a sudden.
• 58:34
  Taylor: But it can create very sympathetic individuals, and I think something I know I struggle with, and I want to get better at reminding myself.
• 58:45
  Taylor: I need to be more sympathetic with myself.
• 58:49
  Taylor: Like I'm always thinking of others, but and giving others like if they need something, I'm like, yeah, absolutely.
• 58:55
  Taylor: Like that's no problem at all.
• 58:57
  Taylor: But I just I have a hard time having that same kind of flexibility and understanding with myself.
• 59:03
  Jonathan: And I think it's there's like so many different things that also contribute to this because I definitely see that too for me.
• 59:10
  Jonathan: Um, you know, we I mean, and RuPaul says, you know, how are you gonna love anyone else if you can't love yourself?
• 59:16
  Jonathan: Which I think is one of the best things, best phrases that appears on television.
• 59:21
  Jonathan: Um you know, we live in a society that focuses a lot on the individual and on grind culture and on saying, oh, we have to do this because it's our role as individuals.
• 59:32
  Jonathan: Whereas a lot a lot of other societies that are more communally focused, it's more about, well, what uh what does it mean to um be have obligations towards other people?
• 59:42
  Jonathan: There is a Native American scholar named Kim Talbera, and she talks in the indigenous context about quote unquote living in a good relation, you know.
• 59:50
  Jonathan: But when we're in a such a self-individual-based society, there's so much more pressure on top of which is people with disabilities.
• 59:57
  Jonathan: We often feel we're not quote unquote good enough.
• 1:00:00
  Jonathan: And then sometimes our disabilities are literally trying to tell us that, like OCD.
• 1:00:04
  Jonathan: Um, and then on top of which is we spend a lot of we exhaust ourselves by being empathetic for other people and we just don't leave that for ourselves.
• 1:00:12
  Jonathan: Um you know, I think something I've had to learn over the years as someone with OCD, and I think going through CBT, being more open about OCD and spending more time thinking, what does it mean to live with obsessive-compulsive disorder to have these fixations and to then have these compulsions and but then also feel like I have to hide them, and then also having to navigate that like everything else in life around that, is um, you know, really trying to be more compassionate to myself.
• 1:00:43
  Jonathan: Um in Jewish English, we have a term that's from Hebrew via called rachmonas, and it means like originally it means like mercy.
• 1:00:55
  Jonathan: Um it comes from the Hebrew word rahmot, but in rachmonas is like compassion, and you're like uh, you know, towards someone else is you know, you would say that someone has rachonas for someone, it's mer it's mercy.
• 1:01:08
  Jonathan: But something that a rabbi said at an event a number of years ago really stuck with me is like we all need to have self-rachmonis.
• 1:01:15
  Jonathan: We all need to have compassion with ourselves.
• 1:01:18
  Jonathan: And I've been really trying to sit with that a lot more, and it's hard, but it's like also recognizing like your brain is literally getting mad at you for having trouble falling asleep, even though you can rationally say you'll be fine.
• 1:01:31
  Jonathan: It's Saturday tomorrow, you're not doing that much, and also it was your fault that you drank the coffee.
• 1:01:37
  Jonathan: Okay, you maybe that coffee wasn't decaf.
• 1:01:39
  Jonathan: You know, it's it's hard to say have compassion for yourself, especially when your brain is actively trying to tell you that you shouldn't.
• 1:01:46
  Jonathan: Um but we all face that as disabled folks.
• 1:01:50
  Jonathan: I mean, you know, it's we've got a long way to go as a society.
• 1:01:54
  Jonathan: Yeah.
• 1:01:55
  Taylor: Um, but I think that's a great, like, if like takeaway like one message from this podcast is like work on that.
• 1:02:03
  Taylor: That's like because it's easy to care for others and if if you're if you're made for that, but it's it takes a lot of practice to constantly remind yourself, hey, be nice to yourself too.
• 1:02:18
  Taylor: Like this might be I'm sure that's where therapy might help.
• 1:02:23
  Jonathan: Yeah, and this might be a good place for thinking about uh, you know, I guess closing out is you know the thing for for folks with OCD, or you know, remember to try to cultivate that in yourself.
• 1:02:35
  Jonathan: And there are different ways people do that.
• 1:02:36
  Jonathan: Sometimes it's through therapy, sometimes it's through doing things that you like, sometimes it's just talking with other people with OCD.
• 1:02:44
  Jonathan: Um, R slash OCD is a great Reddit um for OCD.
• 1:02:49
  Jonathan: Um uh for folks support loved ones of people with OCD.
• 1:02:54
  Jonathan: You know, I think it's both encouraging your loved one to really do that, being kind, being compassionate, be a nice person.
• 1:03:02
  Jonathan: But then also sometimes caretaking, especially when it's more intense, can be hard.
• 1:03:08
  Jonathan: And also having compassion for yourself.
• 1:03:10
  Jonathan: I know my husband and my mom particularly have both been incredible.
• 1:03:13
  Jonathan: My dad was, God rest his soul, incredible and my best friend.
• 1:03:16
  Jonathan: But it was also, I know, hard on them to deal with some of my compulsions and my anxieties and and such when I was going through a flare, particularly if it had to do with having trouble sleeping.
• 1:03:29
  Jonathan: And sometimes it could be quite late at night or quite early in the morning.
• 1:03:33
  Jonathan: Um, you know, and I think compassion there as well.
• 1:03:36
  Jonathan: And then I think also beyond that, it's just, you know, if you're in a workplace, reminding people to take care of themselves and encouraging that in a school in a volunteer context, you know, I think that's really the that's really the start.
• 1:03:50
  Jonathan: And then also remembering to model it is is important.
• 1:03:54
  Jonathan: Um, you know, I think that's something because they're different treatment, people are gonna want different treatment modalities, people are gonna perceive their OCD differently.
• 1:04:03
  Jonathan: But at the end of the day, you know, we all that's something that applies, I think, for everyone is we need to take care of ourselves so we can take better care of others.
• 1:04:10
  Taylor: That is a fantastic line to end on.
• 1:04:13
  Taylor: Make that like the tagline of the episode.
• 1:04:15
  Taylor: Yeah, that was beautifully put, Jonathan.
• 1:04:18
  Taylor: And thank you.
• 1:04:19
  Taylor: I mean, a lot of your points.
• 1:04:20
  Taylor: You're a very eloquent speaker, and so it's it's been a been honor chatting with you about all this and just hearing your your perspective on OCD has been really fun for me to learn.
• 1:04:33
  Taylor: So I'm looking forward to sharing and amplifying what you're helping people understand.
• 1:04:39
  Jonathan: Thank you.
• 1:04:39
  Jonathan: Likewise, thanks for thanks for having me.
• 1:04:41
  Jonathan: And for everyone listening, um Accessible Community also has a great project that I happen to direct called Tally.
• 1:04:49
  Jonathan: And if you're interested in learning about how to write uh content on the technical side of accessibility, um hands-on accessibility, everything from uh toilets to screen readers, um please reach out.
• 1:05:03
  Jonathan: We um we'd love to have more writers and uh you you um you get to work with lots of people.
• 1:05:09
  Jonathan: Um unfortunately you also have to work with me with that, but I promise I'm not suspect.
• 1:05:14
  Taylor: So thank you all so much for listening and stay tuned for our two upcoming episodes also discussing OCD.
• 1:05:21
  Taylor: Thanks so much.
• 1:05:22
  Taylor: Hey there, and thank you for joining us for this episode of Day in the Life on the Accessible Community Podcast.
• 1:05:30
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• 1:05:38
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• 1:05:43
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• 1:05:50
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• 1:05:58
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• 1:06:05
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