Episode 23: Chronic Illness Visibility Advocate | Humans Rights & Hispanic Studies

In Episode 23, Caroline is joined by the incredible Katy Brennan, a junior at Columbia studying Hispanic Studies and Human Rights on the pre-law track. Katy was diagnosed with Ehlers-Danlos Syndrome (EDS; genetic connective tissue condition) in high school and has used writing as a means of promoting chronic illness visibility. Since high school, she has gained extensive experience in advocacy through her involvements in organizations such as Diversability and the Senate Committee on Health, Education, Labor and Pensions. Tune in to learn more about disability rights, illness narratives, and navigating college!

Full Transcript available:

Caroline: Hi everyone, and welcome back to the Open Mic Podcast! My name is Caroline, I'm a rising senior at Columbia University, and I'm so excited to be hosting this series, where we’ll be talking about school and life and everything in-between. Each episode will feature a new topic and a different guest, and today I'm so excited to be introducing the incredible Katy Brennan. Katy, thank you so much for being here with me today.

Katy: Thank you so much for having me.

Caroline: So before we dive into it, do you want to give a little bit of an intro as to who you are, what you're studying, and what you do?

Katy: Absolutely. So, I'm Katy. I use she/her pronouns. I also attend Columbia University where I'm a rising junior. I'm studying Human Rights and Hispanic Studies, and I'm pre-law and pre-PhD. I am kind of talking today just about my disability rights advocacy, I was diagnosed with a rare chronic illness when I was a freshman in high school, which has rendered me disabled and so I've done a lot of work on both writing, speaking, and policy work around disability rights and chronic illness visibility kind of more generally.

Caroline: I want to preface this entire episode by saying that I'm really excited for today because Katy was like the first person, the first guest on the podcast that was specifically requested by one of our viewers. Her name is Leona, and she watched some of your talks on human rights or disability rights. And she's like, “Oh, Katy’s such a cool person, and it'd be so cool if you could have her on your podcast.” So here we are, and thank you, Katy, for being on here today.

Katy: Yeah, and thank you to whoever asked me to be on here. Appreciate it.

Caroline: Yeah, so do you want to get started by telling us a little bit about how your work in disability rights advocacy and chronic illness visibility began?.

Katy: Absolutely. So as I said, I was diagnosed with a chronic illness called Ehlers Danlos Syndrome, or EDS, when I was a freshman in high school, and so EDS is kind of a rare connective tissue disorder. They often kind of refer to it as if, you know, instead of a house being built out of bricks, it was built out of, kind of, straws and children's glue, and so it kind of works that way where my joints all dislocate and I have some organ issues that are prone to rupture.

And that also causes some kind of coexisting conditions and so I have kind of a nervous system condition where my heart rate doesn't regulate properly, my blood pressure doesn't, and then Celiac disease so I can't have gluten, some migraines that have stroke like symptoms, kind of a whole host of conditions.

And so I got really really sick my freshman year of high school with all of this and a lot of it went undiagnosed for a while, and so I went through a period of time where I wasn't really able to eat food, I wasn't able to even hold on fluids, I was having stroke-like symptoms and nobody really knew what was going on, and kind of to add to that, you know, I was in high school, people are,  girls are mean, and so you know because of the rarity of my more umbrella condition, EDS, my peers didn’t really believe that that was real, especially given you know outside of my stroke-like symptoms or if a joint truly does dislocate in front of somebody, it's a very invisible condition. So my peers didn’t really believe it was real, the parents didn’t either really in the community, which didn’t help anything, so I started kind of writing to both document the misdiagnosis/undiagnosis of many of my conditions but also to kind of talk about those experiences.

Caroline: Okay. Yeah, that sounds like a challenge that you really overcome and I, I was saying before to Katy, before we started recording that I really admire all of your work in your young life, right,  like you've done so much and you/ve written, I think it was like 80+ articles with incredible by-lines, by the way, and you've done so many talks. I also want to say that I appreciate that you're very open about speaking about your condition, because I know that this is a very personal topic and a lot of people might not want to speak about it. So thank you for educating us on this.

And when I was doing some research on EDS for the episode, I was typing on my computer, my sister comes by and she's like, “Oh, EDS, I know what that is.” She's like, “A YouTuber that I watch has this.”

And I don't know if you've heard of her but her name is Martina from Eat Your Kimchi, but I think now it's called Simon and Martina, but it's like a Korean culture YouTube channel. Yeah, just a funny little story from my research prep for this episode.

Katy: That’s encouraging to hear. I hadn't heard about that. However, it's interesting, I wrote an article about this actually but since I got diagnosed there's been this weird kind of rise in like pop culture of people coming out about having EDS and I think it's becoming more diagnosed so like, um, they've had like an episode of Grey's Anatomy about it and there was a singer on America's Got Talent who was deaf who had EDS who got really popular and like they've said that Lady Gaga probably has it and so it's kind of interesting to see that like there's more and more people with it and there's more kind of awareness of it.

Caroline: Wow. Yeah, I didn't know that. Yeah, that's awesome. And I guess talking about more personally about your experiences with your diagnosis, I know sometimes, diagnoses can be both life-altering and clarifying at the same time, so I'm wondering how you viewed your diagnosis and how that experience came about.

Katy: Yeah, so I was sort of lucky actually how young I got diagnosed, strange as that seems because it is a genetic condition where I've always had it, but being 15 that's actually a little much younger for being diagnosed with EDS, so I was sort of lucky, and I think that in some ways like you said, it was kind of clarifying.

I've always had kind of strange things that would happen, you know, I would shrug my shoulders when I was younger and they would kind of move around in the joint, or I was kind of the kid who was just always always sick, and always having, you know, sports injuries. I literally remember in like third grade I stood up from getting something from under my bed and I sprained my foot literally from standing up from the ground and it was just a running joke in my household, like how could somebody possibly do that because I was on crutches for months.

So I think in that way it was very clarifying kind of, you know, it made a lot of sense. However, I think also something with EDS is, you tend to get diagnosed once it's starting to get bad or once it's gotten really really bad and so at the same time you know, it was life-altering in that I got diagnosed the same time that it got progressively worse and so it's not that the diagnosis necessarily did that maybe but I definitely did get very very sick when I was a freshman in high school and a lot of that is kind of comes with EDS, so often, you know, one piece of it gets bad and then all of the other conditions kind of spiral with it and then that's where everybody kind of gets this list of diagnoses that continues to grow and grow all at once.

And so it's very common I guess actually for girls at least to have it happen kind of around high school age like with puberty and everything, or for it to happen when you're older in life, like closer to menopause because it can be hormonal related, and so kind of unsurprising that it happened at that point in time, but I think for me, it made a lot of sense but it also kind of came with that kind of spiraling that happened right after that.

Caroline: Gotcha. And this happened, you mentioned, during high school. So, were there any people or any resources that helped you to navigate everything and how did that transition into college happen?

Katy: Sure. So I think, you know, within each disease or diagnosis you'll find, kind of like support groups and things like that. Chronic illness communities are very active on Facebook groups, doctors do not like this fact. Doctors will say to stay away from the Facebook groups. However, I found them to be really helpful in the beginning and I think they're one of those things where a lot of people are very reliant on them for the first few years as they get everything diagnosed and then you kind of wean off of them. You stay on them but like you only go there when you have a very specific question or a time-sensitive thing and so, you know, in the beginning it's posting every single strange thing that happens or asking, “Does anybody have a recommendation for what brand compression socks I should get for my nervous system?” And then over time it tapers off, so I’ve found a lot of help in those groups. Especially because I think with EDS, for example, that’s what I refer to as my umbrella condition because it kind of causes all the other ones and so it's very common in those support groups that everybody has everything else that you do and so you know that's a very centralized place to kind of go.

I think, though, just in terms of more tangible support networks or in person, I struggled a lot in high school to kind of find people. Like I said, people just did not believe it in my year. It was very common, I’d like walk down the hallways and somebody would say like “attention whore” or they would be talking in classes about how I could just take ibuprofen and everything would be better which, I wish!

And so I think, you know, I found a few friends who were really really supportive throughout high school and then obviously my family was very supportive as well.

But it was kind of finding communities outside of that and so I think I turned to writing in a lot of ways just because that was kind of how I found people and how I started working nonprofit spaces.

But I think you know, when we talk about transitioning to college, it was actually very strange to me that there's a lot more. I found at Columbia at least, there's a lot more acceptance and people never really doubted the existence of the condition.

I think in some ways the logic of it. If I was faking an illness, I'd probably pick something a bit more believable, I often tell people, and I think Columbia students would probably subscribe to the same logic.

I just remember actually at orientation, standing in line to like, I think to go into Butler, the big library, for the first time, and somebody taps me on the shoulder and they're like, “Wait, do you work for this organization?” and they pull up Diversability which was an organization I was doing some work for. And I said, “Yes.” But I was very very nervous about this whole exchange. I was like, I don't know if I want to tell people that I do this work.

And they were like, “That's so cool!” and proceeded to tell everybody else around us about how cool it was the work I did, and I was just so surprised because I came from this high school experience where people just didn't think it was real, they weren't supportive of it, so I will say it got a lot better when I got to Columbia luckily.

Caroline: I'm glad that that shift happened. Yeah, and that there's more acceptance here. And you mentioned some of the articles that you wrote and how you turn to writing as your sort of outlet for what was going on in your mind. Do you remember what motivated you to write that first article and to actually publish it?

Katy: Yeah, so I remember actually I was sitting on one of the Facebook groups that I talked about. And I had seen somebody else write an article for the site called The Mighty. At the time, it was very small. If you look it up right now actually it's very big and which is a really interesting development as well.

But it was a very small site and you could submit a story and it would get published if it was selected over the next few days and it was kind of everybody just writing about chronic illness or disability issues and so I remember that I was supposed to like, I think I was supposed to go on a date or something like that that night and I'm sitting there and had nothing to do, and I am looking at this article and I'm like I have some ideas about things that I've kind of learned through my first year with EDS because I was, this was kind of the summer between my freshman and sophomore year of high school so I had had my diagnosis for almost a year at that point on, and so I just started kind of typing them out and found over time that they were kind of going into some themes and it kind of had a structure and so I was like, “You know what, I'll just submit this I won't tell anybody and we'll see what happens.” And it got published literally a day later because their turnaround was amazing.

And I obviously then shared it on my Facebook. My mom was the proud parent who shared it with friends and whatnot, and the cool thing I think was the site posted on their Facebook page and then people were commenting and connecting with me on Facebook and so I think that kind of got me hooked on it and I continued to write throughout that summer.

But it's interesting too though because the site that I was kind of publishing on was very very small at the time, as I said, and it often would be that they would contact me if there was an EDS issue in the news they wanted me to write about or something. But now it's actually very very big and so a lot of people know The Mighty among chronic illness communities so it's been interesting to see that shift, also.

Caroline: That's awesome. Do you think that your life would be different if you chose to not write or if you chose to stay more private about your illness, versus kind of using your illness as your voice?

Katy: Yeah, I definitely don't think I would kind of be on the trajectory I am right now. I don't think that I would be a Columbia. I think that that was like a cornerstone to everything else.

I do think that, there’s a lot of, I got very lost when I kind of was diagnosed. I also, though, was looking at, um, I, you know, as I said, was unable to kind of keep food or water down because I had undiagnosed Celiac’s disease and I also was having these stroke-like symptoms.

I think like doctors at the time or the kind of sentiment among my parents even too was kind of… Well, doctors were saying that there was no way I was going to college, and the sentiment was I probably wouldn't live past 21, so that was kind of the number in my head and so there was no real thought about college at that point. That was kind of off the table, so was any kind of career.

And so I think, you know, I started writing and processing through and then was thinking you know at least in whatever time I have left at that point, looking at that kind of timeline, I could continue to write and kind of be a writer. And then I think you know as I continued to write I also received these diagnoses and my health luckily stabilized and that kind of “21” melted away as a kind of endpoint.

And so I do think that that's kind of what led me ultimately to finding again what I wanted to do and all of that and so I don't know if I hadn't been writing if I would have, you know, even gotten as many answers, if I hadn't had people kind of connect with me on the way to recommend doctors or to recommend diagnoses to look at and I also don't think that I would definitely be on kind of the career path or, you know, be at Columbia or working for the American Association of People with Disabilities this summer if I hadn't started writing.

Caroline: Yeah, I think writing is a really good outlet. Even if you don't want to publish, I feel like having some private journals or just like private written pieces helps you to think things through, and also helps you to come to your own answers, but then if you want to publish it, then it's really great at reaching millions quadrillions of viewers, or of readers who can better understand you.

Katy: Absolutely. I know a lot of people actually too in the chronic illness community or disability who write under pseudonyms for that reason. A lot of them will come out later on. Something that happened actually I'm, like I said, I'm an intern this summer with the American Association of People with Disabilities, and the CEO Maria Town would talk about how she had actually like an anonymous blog while she was at the Department of Labor, on shoes and she would rate shoes  on how quickly she wore through them as a person with cerebral palsy, and she would also talk about disability policy in these like blog posts, but she was completely anonymous because of her position in government, and eventually she revealed who she was and she actually got found and hired I believe for the Obama administration through the blog ultimately, so I guess it's just like very common though that people will start out at least writing under the pseudonym just because they aren’t ready to kind of share in that way but I think that sometimes over time people do, sometimes they don't, kind of reveal that, but I think that it's interesting because many of us, you know, start to think of it in a policy-oriented way or thinking about things to change or things that we wish to be known, and so I think it is very common still to publish in some way. Yeah, it's just you know, whether it's anonymous or not.

Caroline: Oh, that's so cool! I did not know that. And you mentioned that your writing and your being more public about your condition helped to open a lot of doors and you mentioned the organizations that you worked with. So do you want to tell us a little bit about what you do in these different internships and jobs?

Katy: Sure. Um, so I think you know just to delineate it a bit I think starting in high school I was mostly writing as I've said, and I think over time that evolved kind of expanded into speaking and also doing some advocacy work and so I started just as like a social media intern for a nonprofit, specifically in an online space called Suffering the Silence. And so Suffering the Silence actually came out of kind of an illness narrative book, and they were basically focused on just visibility mostly through storytelling so through posts on Instagram and storytelling events and so I planned a few events for them in Chicago where I'm from, and then also just was doing their social media.

And kind of from there I ended up working, then ultimately next for Diversability, which is another kind of nonprofit organization or for-profit social good organization, that is aimed at similarly empowerment, but disability empowerment so more broadly disability, not just chronic illness. And again through storytelling and so I was kind of managing all their digital content, their social media, but also kind of their blog posts and just any outward-facing content.

I think that both of those, like I said, were very focused on storytelling and so that kind of stuck with me even though I wasn't specifically writing for those organizations. And so just kind of empowering other people to tell their stories in whatever way they were comfortable, and since then, I have also worked as I said with the American Association of People with Disabilities, so I was a summer intern last year, and then this year as well because of COVID. And through them, I had the opportunity then to kind of receive a stipend and some mentorship to work for an office on Capitol Hill so I'm working ultimately for the Senate Committee on Health, Education, Labor and Pensions as a Disability Policy Intern this summer.

Caroline: That’s awesome. I'm wondering how you balance your personal life and self care versus caring for others.

Katy: Yeah, it's definitely an issue and I think in particular, I struggled a lot actually when I was working for nonprofits and working on social media work because you know you don't have those defined hours of nine to five or during school year you know if you have an internship, it might just be like Fridays from nine to five or whatever it may be, um, it's very much just when you have the time which is great, but it also means it's always in the back of your mind that you could be doing that work, which I think is something that I struggled with, just not being able to sit down and watch a movie because I could be also like making graphics at the same time or something like that.

So kind of learning to completely kind of sign off and tell my supervisors that I was kind of out for the week or out for the weekend so that I actually wouldn't be continually going back to work was something that I had to learn to do.

And then I think otherwise there definitely is an issue with burnout. I remember when I was applying to colleges that I kind of was considering some options that were a bit more remote, not in cities. I was looking at Brown, which is a bit more removed, like the Boston area even. I was also looking actually overseas at St Andrews which is a very removed kind of town in Scotland. And so it was very very remote.

And I think like when I was looking at those options, they're really great schools, and like the difference between that and Columbia was that I was going to be very removed and so in some ways I kept thinking to myself, this is a great way kind of just to forget about the advocacy or just kind of focus on school work and then re-enter because I was feeling very burnt out and I wasn't sure if I wanted to continue or to what extent.

I knew that if I came to New York I would be very inclined to continue full speed ahead because there's such a community here and there's so many speaking opportunities.

So it definitely was something where I actually had to make a decision too when approaching college, and it's something that I think a lot of advocates who start in high school kind of have to decide on is whether or not you want to stay involved in college or to what extent because I considered just kind of taking years off and then starting again after if that makes sense.

But I ultimately decided I think I would have gotten bored after about three weeks or so. I just know myself so I knew that I had to come here but you know, decrease hours when I got here obviously and kind of try to, like I said, take more time off and kind of make those boundaries more clear.

But it's definitely something I've kind of gone back and forth on and it definitely will be that sometimes I have no projects and sometimes I have like four or five at a time and that kind of just fluctuates.

Caroline: Gotcha. Do you think that most of the time spent outside of the classroom, do you think it's kind of for your internships and working for your advocacy causes or is it kind of like split between that and homework?

Katy: Yeah, I think that a lot of time is obviously spent doing academic work and a lot of time I think is spent doing, you know, normal college things, like I'm involved in student organizations on campus.

I do find though that it always seeps into everything else and so you know I'm involved in the Law Review right now and they have given me the opportunity to kind of allow it to seep into that and so I had the opportunity to kind of like plan a Disability Law event and we have our first—Americans with Disabilities Act is called the ADA—so our first ADA liaison and so she kind of just makes sure that everything is compliant, that we're putting out, that there's image descriptions on all of our social media posts.

And I've kind of helped develop that role and on boarded her and so I think like, I have some organizations obviously the don't sound related and aren’t my advocacy work but it always just kind of seeps and because I see something that's inaccessible or something that we could do just to be more inclusive and then I end up sharing the idea and getting involved in that way.

And then I think I spend just like a lot of time, because of my majors being kind of more of the philosophy-type majors where they're very paper based, I think like I spent a lot of time just walking around thinking big thoughts and thinking about life and death and illness and I've luckily oriented a lot of my studies to be kind of disability-oriented or my final papers were always kind of disability studies and so I spend a lot of time also I think thinking about like broader series and psychoanalyzing myself and why I actually narrate, so that I can write kind of papers about these things. 

So I think it just kind of all seeps in eventually but I do still take time obviously to completely like check out and go into the city with friends or things like that.

Caroline: For sure, and talking about your majors and how it's kind of, they’re more paper-based, I guess theory based…. How did you decide on them when you entered college?

Katy: Yeah, so I, if I remember correctly, I think I applied as an English and Sustainable Development major on because I had done work on the Sustainable Development Goals in high school and that sounded cool and then I applied an English major, which made a lot of sense with my writing background and then I remember by the time I got here I decided that I was going to shift to Political Science and Human Rights because somewhere when I got into Columbia somewhere in there I kind of shifted from thinking that I would do journalism and writing to thinking that maybe I could revisit what I had always wanted to do which is that I had always been interested in law.

And so I think something about getting into Columbia and my health stabilizing gave me that vote of confidence to pursue that and so I had shifted back to kind of political science and human rights.

Over time, political science fell away and actually a lot of that had to do with how structured the major was. I think that like the whole kind of near-death experience or having an original timeline very much changed my kind of philosophy on things and I have decided that I only kind of want to take classes that I really enjoy or only like pursue things that I'm really passionate about and so the very strict kind of major that political science is at Columbia, while it gives you some options, it was too much kind of quantitative work and whatnot and so I just decided to kind of ditch that eventually and so the majors I have chosen I think kind of reflect that.

And so I'm in two programs that kind of allow me to pick whatever classes make sense for me and for my interests and so I've been able to take a lot in like narrative and human rights and international law and literature and kind of looking at ultimately like disability interests that I have through those kind of broader seminar classes and so I think that that was just what made sense for me.

I also think I struggle with some of the... I do really, really well with memorization, but if my brain is off on a day, if I have brain fog, if I have a migraine, I can't memorize very quickly and so I think that like taking a major that was kind of task-oriented could have been really difficult for me so it made a lot of sense to kind of go in that direction.

Caroline: Gotcha. So, I've heard good things about the human rights major because one of my friends, Tamarah, who is... she was on the Columbia Daily Spectator podcast because she's the publisher of it. She highly recommends that to our viewers in case you're coming to Columbia, because it's very flexible right? Because you can choose your own niche of what you want to study within the major?

Katy: Yeah, um, and fun fact she actually was my resident first semester of last year.

Caroline: Oh my gosh! Wait, actually?

Katy: Yeah, I was, I’m an RA on campus. Yeah. Um, but yeah definitely a lot of flexibility in that.

Caroline: Oh that's so funny, so many connections, and you're also in Hispanic Studies right.

Katy: Correct, yeah.

Caroline: So how did that major come about?

Katy: Yeah, so that major was kind of random, I took Spanish throughout high school and so I took a Spanish class coming into Columbia kind of on a whim. I had already placed out the language requirement.

But I decided to take on LGBT rights in Spain because it just sounded super interesting and I was thinking maybe I would continue it just so I could, you know, use Spanish when I'm practicing law.

So I took it and  then I decided to continue with Hispanic Cultures I and II just because it was the Global Core for Columbia and it sounded interesting. And so I took Hispanic Cultures II actually first, it was just a strange thing that I did, and this was during spring of 2020 so the kind of COVID semester.

And I think something really interesting that caught me, my attention immediately was my professor was talking about kind of cultural studies and how it combined you know language and literature and laws and politics and econ and everything of a kind of a particular region, and doing that kind of like analysis of Hispanic cultures, I was able to kind of explore whatever topics interested me within the class and so I ultimately was able to kind of explore why Frida Kahlo was so popular in Mexico because she you know was producing this work that was on disability and chronic pain and it was kind of at the same time that thinkers like Nietzsche were working and were saying that we shouldn't talk about disability. He has a documented disability but would refuse to put it into his work, most people don't know that.

And so I kinda was exploring why Frida had so much success during these kind of cultural norms and I just got really fixated on that concept and I was finding that a lot of very early Spanish authors, particularly female authors, were writing about disability as an advantage, which is just super weird kind of radical notion even today that disability could be something powerful or like a positive experience.

So I just kind of got interested I think in the culture just kind of through that and through the disability lens and kind of continued to take classes and, like I was saying, with the Human Rights major it's very much a, kind of, I call them a do-it-yourself major, you kind of pick what classes makes sense and so they just say pick seven electives.

And so I'm able to kind of take what makes sense for me and like get that support. I also have found over time that I have a really more specific interest I guess in like disability and colonization and how those have kind of gone hand in hand and so I think when I'm looking at kind of theories of labor and colonization it's made a lot of sense to look at Latin America specifically and then to also learn Portuguese and Spanish and kind of have all those languages.

Caroline: Oh that's so interesting. I love how you say that everything is so… everything is very intertwined. Like you're not just focusing on one aspect of someone's life, because I don't know it's kind of like the theory of intersectionality right like everything is related to each other and one thing has an impact on something else, even if it's not necessarily direct, it could be very indirectly related but still have a, an important impact. So I think that's awesome.

Um, let's see. Oh, there was one question that I wanted to ask. I took this Medical Sociology class in the past Spring, Spring A term, and we were talking a lot about the definition of disease versus illness versus sickness versus disability, and so I'm wondering if the chronic illness community has any views on that.

Katy: Yeah, so I was, I was very interested by that question when I saw in the document because like this reflects a very, like, kind of high level like understanding of the difference with the terms because most people use them interchangeably still I think, um, I will say you know as you likely know then having taken that class like disease tends to be more medical, is a more medical obviously term, and I think that that is probably the case. With the chronic illness community, I mean, when you hear somebody saying, oh “that's like a diseased piece of flesh” or “that's a disease that somebody has,” it's very like disconnected from the person themselves, you don't say that a person is diseased, you say that like maybe an organ is diseased or you just say that they have a disease and so I think that like the difference between that and illness are still kind of present but it's not a large, a huge point of discussion necessarily. I think that something you will see is that when you talk about narratives or pieces of writing that people produce on these topics, they’re often referred to as illness narratives and that's widely accepted I think within this community.

I do think that people refer to themselves as you know like they'll say “I'm chronically ill” instead of saying “I'm sick.” I think that's a kind of interesting differentiation that sometimes does deviate in some ways from the kind of differentiation that exists between sickness and illness. Illness is supposed to be kind of the symptoms and the state of losing health and then sickness is supposed to be kind of that interaction with society if I have it correctly.

And so, you know, you would expect somebody to say like “I'm sick” more so but I think there's something about adding that “chronically” in front of it that makes people say “I’m chronically ill” a lot of the time.

I don't think there's a huge discussion there necessarily though at the same time. I think that somebody could say, “I'm sick”—there's documentaries out called “Trust Me I'm Sick” and then there's also documentaries out or books out that are talking about chronic illness or becoming incurable or things like that are kind of the titles and I think they're used interchangeably.

I think, though, the greater kind of tension that exists, ultimately, is between the whole chronic illness and disability piece of things and it's something that I struggled with.

I can't pin down exactly when I went from just saying specifically that I was chronically ill to actually fully identifying as disabled I think that that's a really hard jump for people to make and a lot of people still won't do so. It's definitely one of those things where, you know, in high school I received accommodations under Section 504 of the Rehabilitation Act, that's why they call them a 504 plan, which indicates that you have a disability if you are receiving kind of accommodations under this and you know, you are identified for legal purposes as a student with a disability.

I had a disabled parking pass and all these things but I think that at the same time, I still wasn't saying, “I'm a disability rights advocate” or anything like that. I was saying that I was working on chronic illness or chronic illness visibility.

And I think it took a really long time to finally say like “I'm a disability rights advocate” or “I'm disabled” just because there's a lot of still internalized ableism, especially if you do kind of grow up being, identifying as able-bodied.

And so thinking that you had to be very very, like have a very severe limitation or that it had to be very visible was definitely something that I kind of internalized over time and so I think that that took me a while and took me a long time to kind of begin to do that work and I think even when I started working for Diversability, which was, as I said, an organization that works on disability empowerment, I still personally was not fully there yet with identifying as disabled and so I felt very strange and I do distinctly remember writing an article for their blog and writing in it “chronically ill and disabled individuals” and my supervisor was like, you know, that’s fine, but chronic illness can fall into disability just as a general thing. Chronically ill people are disabled and like it's up to them if they want to self-identify that way but like, those are ultimately one in this same, not all disabled people are chronically ill, but all chronically ill people could identify as disabled just because you know ultimately they're going to have those limitations and so I think that that kind of, somewhere in there I started to do so, but I think that that's where people kind of have more of a debate is whether or not they want to identify as disabled or chronically ill or both.

I actually will add also with the kind of disability/chronic illness piece and the whole being legally defined versus personally-identifying, I actually have found there's a strange actually generational piece to it, as well, and a lot of people within the disability community have also, um, there is this really weird kind of situation in which you know I have a grandmother who's been legally blind since she was 15 years old.

And so she's been sort of disabled since the same time I was disabled in my lifetime and she still, to this day, if you refer to her as “disabled” or if you talk about her experience within the context of the Americans with Disabilities Act, she gets very visibly uncomfortable and does not necessarily self-identify in that way, um, when she will, when it's needed, she will when she has to kind of board an aircraft early because of her kind of lack of vision, especially if she's flying alone.

She will if she's kind of talking about why she can't see the buttons in an elevator, things like that, but for all intents and purposes, she doesn't always self-identify that way. And like that's okay. And so I think that there is this really interesting piece actually where, you know, other generations or even in other cultures like people are, it's even less acceptable I think to kind of identify as disabled or it's kind of more of a new concept and so I think that's been interesting as well just to kind of notice that even as I've kind of talked about experiences, even as I talk about her experiences with disability to in my own work, she sometimes can be visibly uncomfortable or things like that. So I think that that's just an interesting piece and when I talk actually to employers about disability employment they definitely have said that our kind of generation has come into the workplace and has been like no I'm disabled and proud and that's a very new phenomenon.

Caroline: As a disability rights advocate, that is one part of your life but you're also you have many other parts of yourself that make up who you are. So I'm wondering if we want to shift a little bit to fun experiences that you've had in college that you want to reminisce about right now or that you just want to mention and suggest any fun things that people can do in college or specifically at Columbia.

Katy: I'm in that weird group of students who like evacuated during their freshman year. And so, I will say like full disclosure my freshman year I was in a flare the first semester and then I took four classes second semester. I was out of the flare, I was like “this is going to be great” and then we evacuated. 

I was luckily back for last year because I was an RA on campus. However, I wasn't able to do much. I think since then though, kind of what I found is, um, one thing I found, kind of in the last year when I was on campus when we still weren't able to do much was that I actually hadn't explored the neighborhood around us very much at Columbia specifically. Whenever I had a free moment I would go downtown which was great but I actually did not know that like Riverside Park existed right near campus, and I felt like still like a stupid freshman having that realization my sophomore fall.

But I started to do all my course readings there and would take a walk there at night. And so I think exploring the neighborhood is something I always told my residence at least to do, because I had first-year residents second semester.

And then also just like finding fun places in the city, I used to go out alone, which I think is totally fine and fair. I would find that I had free time on Fridays and my friends would have classes or work.

And so I would just go into the city myself, which I think is a really great thing to do and to be comfortable doing. But then I wasn't exploring with other people a ton and so I was just going to like whatever I knew existed or whatnot and so I've had more fun this summer just going out with friends and kind of going and seeing what's out there.

I think just like doing a combination of that. Especially at Columbia it's very easy to get stuck in the bubble but then also not explore the neighborhood, and then also being willing to kind of, you know, go out by yourself but also like letting friends lead sometimes I think has been really great.

Caroline: Yeah, that's a good balance to try to hit, and it can be hard but it's hopefully manageable for our listeners. And let's see, before we end off for today, is there any other piece of advice that you want to share with people who might just be entering college or who are planning to apply to college really soon?

Katy: Okay, I will say, I love my majors, I actually do wish that I had looked at the bulletin a little bit more coming into college and I think this could apply to a lot of schools.

I don't know if I would have done it differently if I could go back. However, I think I have that “fomo” of having not come across it very early, was we have the Medical Humanities major here.

They've just started kind of advertising it a little bit more, but I didn't know about it until the second semester of this year and I think it would have really met a lot of my interests.

I don't know if I would have been willing to take the biology requirement and whatnot but I think like, I wish that I had kind of paid more attention to that and looked into that before I kind of started on.

But I think otherwise just making sure to like, yeah take advantage of whatever you can I did find that I fell into freshman year just kind of doing my work super early and I was super prepared for classes but I wasn't going out too too much. As I said, I was in a flare for a little bit of it, but I did find this year like if I have plans on the weekend I actually was more motivated to do my work because that's something to look forward to.

So, um, I think that it's a Columbia student kind of thing to fall into but don't think that you can’t actually go out. It might actually make you more productive over time too.

Caroline: Mhmm, having that kind of reward for actually finishing your work efficiently. Yeah. And I just wanted to add that I'm actually majoring in Medical Humanities. So I think, I think this episode is just really really fun to listen to and just to learn about you and your work and everything that you've done. And there are, I think, even if you don't pursue the major, there are a lot of classes that can fall under the medical humanities major that I think is really cool, and one that I took called Contradictions of Care. And it's “from intimacy to institution” and so it's talking a lot about the personal caregiving relationship but then also like the entire system of caregiving even internationally as well. So that's something that might be interesting to you.

Katy: Yeah, I think that's also something I've found with the whole do-it-yourself major thing, or something that I've been able to do at Columbia, I guess, is that I have tailored on my classes to my interest in like disability studies and so I have taken like, like I said like, I took international law and literature, but then my final paper was on a disability studies kind of text that I picked out. I remember first semester of last year I somehow made all of my final papers related to disability and just really made it a point. And I did a podcast on Locke and ableism for my Contemporary Civilizations class and I had, I was taking like Origins and Meaning with Brian Greene who’s a famous physicist who has this class on like life and death and what it all means, and I wrote a paper on CRISPR and genetic engineering and then I had… what was my third one…? Oh and I had a Hispanic studies class I was taking and I was just writing a paper about this deaf nun who was writing a book about how her deafness actually made her closer to God and I just found that super fascinating and so I also think  that's one of those things where, you know, even though I didn't find the medical humanities major or for schools that don't offer disability studies, which is a lot, there's a lot of opportunities to like take classes like that, like you were saying.

Caroline: Yeah, that's awesome, and I think that's a really good and hopeful note to end off on and just thank you Katy for being here today and thank you to our viewers for listening, and if you're watching this on YouTube as a video podcast, make sure to hit the thumbs up and subscribe and comment down below. And if you're listening to this on any other podcast streaming platform, then make sure to hit the thumbs up if you can, and follow as well, and yeah, I think that's it for today. Thanks everyone. And I always forget this, but we do a high five or I try to remember to do a high five at the end of each episode. So we're basically just like hitting our cameras, and then saying clap, just to make that sound effect. 3, 2, 1… clap! Okay, yay! Thanks everyone and we’ll see you in the next episode.