Episode 3 notes and transcript

In this episode, Christina talks to Elizabeth Bagely about managing migraines and why the eduction system should try to minimize students' stress.

Listen on Spotify, Stitcher or Soundcloud

Recommended resources:

Disability Visibility compiled by Alice Wong (it’s also a blog and a podcast!)

Living with Claireity

Disabled Eliza

Jessica Kellgren-Fozard

Learning Outside the Lines, by Jonathan Mooney and David Cole

Some insightful quotes from Elizabeth:

When I have migraines I can't focus on anything. My migraines involve vision changes, and so I can't even see straight. So I'm always constantly worried about it and being like, “Okay, if I get a migraine, how is this going to affect my day? How is this going to affect assignments that are due?” … It's more often the worry behind it. That's like pre-planning everything ahead of time; make sure I get enough sleep, make sure I eat enough, make sure I get enough water, trying to stop it as soon as I can, those kinds of things. So it's not something that really affects my learning as much as it does affect my life.

But it's one of those weird things that – there's some ways that I'm very confident about who I am and what I do. But then there are other times like that, where I'm like, “I'm in a situation where I'm in pain. The best thing for me to do would be to leave. But how is that gonna look to everybody else in the room?” … And I know that’s something that I've had to struggle with, is setting boundaries and being like, “No, I need to leave this situation. Now.”… I wish I could put that in my accommodations. And be like, “I'm not good at sitting up for myself. So please believe me when I say this thing bothers me because I'm not faking it. If I'm saying I need this thing, it's because I need this thing or my brain will explode.”

Transcript:

Music: “Shaolin Dub” by Skinwalker

Christina Baker:

Hi, welcome to Beyond Accommodations at Disability U, a podcast where disabled Penn State students envision a world by us, for us. I'm your host, Christina Baker, and today I have Elizabeth Bagley.

Elizabeth Bagley:

Hi everyone. My name is Elizabeth Bagley. I'm a third year student. My pronouns are she/her/hers. I'm majoring in Human Development, Family Studies with minors in Disability Studies and Deafness and Hearing Studies. So I was diagnosed with migraines when I was in sixth grade. So it's been about nine years at this point. And they are chronic, but they're also random. So you never know when they're gonna happen. When they do happen, they are debilitating. I didn't really identify as having a disability really until I came to Penn State. And they were like, “Oh, you have to use Disability Resources.” And I was like, “[sarcastic] Oh, thanks for giving me that label.” But it's really something that I’ve really come into, and found a community in.

Christina:

So the structure of this podcast is we talk about, like, how your disability has impacted you in the school system and what school would look like if it were created for people with your disability and then how you operate and get accommodations in the current system. So do you just want to talk about how your disability impacted you when you were younger in school?

Elizabeth:

Yeah. When I was first diagnosed with migraines, they occurred pretty regularly. They would happen once a month and they would be four hours long. And so that meant that I would miss either the morning of school, or the afternoon of school. I would never miss an entire day. And my teachers — and again, this was middle school at the time, were very understanding. I tend to be a good student, and so they knew me and they knew I wasn't BS-ing it and they would trust me to, like, get my work done on time if I needed to miss stuff. So then that was middle school. And then as I got into high school in my sophomore year, my migraines changed. They turned from being every once a month, like clockwork. For four hours, they became eight hours long and completely random. I could give six months without having one. I could get two in three weeks. It really just kind of threw a curveball in what we thought we understood them to be and because they turned into being eight hours, that would mean an entire day or an entire night. So I would miss an entire day of school, or I wouldn't sleep well, which would affect my schoolwork the next day. And something that has definitely ebbed and flowed over the years and again, I could go six months without having one and it would never be an issue. But I always tried to bring it up with my teachers at the beginning of the school year and be like “Look, I have a doctor's note. This is a thing that I do every year.” I just let teachers know in high school, they were very understanding and if I had to miss class or miss an exam or something they would help me reschedule. College has been a little bit more complicated, because it always is. But I started using Disability Resources and I have somebody I meet with one-on-one SDR and they helped me with my accommodations and I give them to my professors and it's definitely more interesting because an eight hour migraine on one day doesn't just affect me that one day. I have — I call it post migraine weirdness the day after. I just don't feel right and I don't operate to do my best work. And so if I get a migraine, let's say, at like 8am and it's eight hours long, so it's done around four and I have an assignment due at midnight. The lines get blurry on when can I use my accommodations for extensions, when can I not? So it definitely is something that I have to meet with my professors one-on-one to talk about and establish the beginning of the semester because each one, they handled it differently.

Christina:

Did you have any like IEP in high school?

Elizabeth:

No, I didn't. It was basically just at the beginning of the year, my parents would email all of my high school teachers and be like, “Look, this is the situation and this is how we've handled it in the past, blah blah blah.” But I don't know if I would have qualified for an IEP, but that's not a road that we went down.

Christina:

So what was the process of getting accommodations legally like? Because everyone else I've talked to had an IEP in high school.

Elizabeth:

It was weird. I'm from State College, so I am pretty familiar with Penn State. My dad works here. My brother went here. I took summer classes and I was in LEAP before my first semester. And operating the way I did in high school, I just sent my professors an email. I was like, “Haha, this is what I think I need to do.” And they were like, “Yeah, this email is nice, but you have to go through SDR.” And I was like, “What the heck is SDR?” I had no idea that it even existed as an office. So they were like, ‘Yeah, you have to go talk to Student Disability Resources and all that accommodations and then you have to give me the letter and we have to meet and then and only then can I allow you to have deadlines extended as need be.” Which is a little ridiculous. I have issues with how the school system works. But so I went to SDR and I was like, “What do I do?” The website was not great at the time. Still not great. But I met with someone there and was able to get accommodations that way. And I was like, “Look, this is the medical paperwork I do have from middle school.” And I haven't actually gone to see a neurologist since middle school, so it was kind of a backlog of all of my medical history. And we said like, “This is what I've gone through, this is how I'm affected. What can we do?” So then we had our first initial meeting and I — we adapt the paperwork as need be every semester but it's been basically the same since I started.

Christina:

And how do you think having migraines, and the way that the schools have handled it — how do you think that’s affected your learning?

Elizabeth:

It's interesting, because I want to do my best work always. And when I have migraines I can't, I can't focus on anything. My migraines involve vision changes, and so I can't even see straight. So I'm always constantly worried about it and being like, “Okay, if I get a migraine, how is this going to affect my day? How is this going to affect assignments that are due?” So I'm always subconsciously thinking about it, but, because they happen so infrequently, it's not like… I don't know, it's — when they happen, they happen and they're debilitating and I can't do anything. And so it's more often the worry behind it. That's like pre-planning ahead of time everything; make sure I get enough sleep, make sure I eat enough, make sure I get enough water, trying to stop it as soon as I can, those kinds of things. So it's not something that really affects my learning as much as it does affect my life.

Christina:

I've heard about people who have migraines that last like a week or like a really long period of time, and then they have to, like, make up all of that work. Do you have difficulty making up the work that you missed?

Elizabeth:

It kind of depends on the day. For instance, this past week, I had an exam, I had a project due and I had four papers due. If I would have had a migraine, I would have been screwed. So it wouldn't have just messed with one assignment it would have messed with a whole bunch of assignments. So it really depends on how the calendar falls. What I have to do, what I don't have to do, so yeah, just kind of depends on what's happening.

Christina:

I think you said your professors were like pretty accommodating once you had SDR’s letter. Have you ever had a professor who reacted in a way that wasn't really ideal or like considerate?

Elizabeth:

No thankfully, they have all — knock on wood, I don’t even know if this is made of wood — but they’ve all been very considerate. They're like, “Okay, this is how we can work through this.” And I usually establish pretty early on I am a good student. And so they're like, “I’ve seen that your work ethic is good. We'll work together to make this year as easy as possible.” I thankfully haven’t had many issues.

Christina:

I think when we were texting earlier you mentioned that you get extra time on exams.

Elizabeth:

It's not that I get extra time on exams, but if I miss an exam — a lot of professors are like, “If you miss an exam, you miss an exam.” But if I miss an exam because of my migraines, I do get the chance to make up the exam. So I'm glad that I have these accommodations on record because being punished for something you can't control sucks. And the fact that I can't control when these happen, no matter how much I try, it's frustrating. So I'm thankful that I have the accommodations that I can make stuff up when I need to.

Christina:

And are there any other symptoms of your disability that sort of affect you in school that you haven't mentioned yet?

Elizabeth:

So one of the biggest things I can do to prevent my migraines is to eat regularly and drink water, stay hydrated. And so I intentionally schedule my classes so that I have breaks for lunch and dinner. Because if I don't, then that increases the probability that I get a migraine. So when I'm scheduling for classes, I have to be very aware I need at least an hour for lunch and for dinner. And so there are some times where that's not possible. For example, I'm in pep band and Oriana singers, which, I love both ensembles dearly, but it just so happens that Oriana singers ends at 5:50 on Thursdays and pep band starts at six o'clock, which is a 10 minute time gap. I will often like eat a sandwich as I'm running across campus to get from the music building to the Blue Band building. So sometimes it's unavoidable, but then I have to back plan in my day: okay, I have to eat a sandwich between these two times. When can I get the sandwich? Or when can I make the sandwich? So it's about pre-planning, but as much as I can I try to avoid having back-to-back classes over meal breaks.

Christina:

And that's something that I think is probably your problem for a lot of people. And not even just people who have disabilities. There's a lot of stuff about school that makes it very hard to get enough sleep or eat enough food. And do you think that your disability ever impacted your social life at all? Or…

Elizabeth:

[laughs] The answer is actually yes. Migraines are complicated and the fun thing is no one knows why they exist. And so you're just like, “Great, shot in the dark, what works and what doesn't work?” For me, one of my other really big triggers are flashing lights and bright lights. Which means I can't go to concerts, like at all. Because almost every concert that happens at the BJC has bright and flashing lights. And so my roommates have gone to see like Taylor Swift before and I’ll be like, “I would love to but I literally can't.” Because it's such a big trigger for me.

Elizabeth:

And I also need to make sure, like you said, getting enough sleep is important. My bare minimum of sleep for my migraines is seven hours, if I don't get that I'm completely screwed. And so sometimes that means having to say no to things or having to go to bed earlier than my roommates. Or if we're like going — like my friends are going over to another friend's house to make gingerbread houses tonight. They're like “Yeah, we probably won't be back till midnight.” I'm like, “I have to be up early tomorrow. I don't know if I can go because I need to go to bed at midnight.” So it does affect my social life because I have to pre-plan I have to make sure I eat, sleep, [avoid] flashing lights. I need to make sure, “Okay, if we're doing a five hour activity, is there time that I can eat food? Is there a time that I can have water? Like, do I need to bring my own snacks?” [Those] kinds of things. So it does affect my social life, because I'm constantly thinking about all of these different factors. And then it's awful, because even when I do think about all these factors, I could be doing everything right and I'll still get a migraine and it's completely unavoidable and then I have to cancel plans for the day. And I hate canceling on my friends, but they all know that I suffer from migraines. And so it does affect my social life.

Christina:

So now we're gonna move into part two, which is what would school look like if it were created for people with your disability? Currently you have accommodations, because school is made for people who don't get migraines, but what would it look like if it were made for people who do get migraines?

Elizabeth:

Oh, gosh. One: there wouldn't be classes offered over like meal breaks. There would be a designated time that everyone could eat because eating is important. It's just a little bit more important for me. But it's also hard because different people have different triggers when it comes to migraines. Like, some people have food triggers. I have an uncle who can't eat any sort of deli meat because the way that it's processed triggers his migraines. So for me, it would be making sure everyone has time to eat.

Elizabeth:

Understanding? I know that sounds weird, but I have a whole thing about schools and deadlines. And like, yes, deadlines are important, but also sometimes unavoidable things happen. And so I have professors who have automatic — there's a deadline, but there's an automatic 48-hour extension period built in. I would love it if every assignment had that because then I wouldn't have to worry. I'd be like “Yes, this thing is due tonight. It's Tuesday but if I get a migraine on Tuesday, okay [I have] Wednesday and Thursday that I can work to make it up.” Or professors, who [say] “If you miss an exam, you miss the exam, and that's it. You get a zero.” In a perfect world I think make-ups should be allowed. But I would also completely understand — I've got professors who have established with me that my exams in person are multiple choice, but if you miss it, it's an essay-based one. Because, of course, they are worried about people cheating. So having that option be there for everyone rather than it being a special offer thing.

Christina:

Yeah, and I think, I talk about this on every episode, but I think a lot of things that are good for people who are disabled would also help a lot of, you know, non disabled students.

Elizabeth:

Yes, yes, yes.

Christina:

Like you should be taking an exam when you're at your most confident, when you're well rested, when you feel like you're in the right headspace. Sometimes you don't, and maybe it would be nice to be able to reschedule that exam for everyone.

Elizabeth:

Exactly. And I think I feel like mental health is becoming this big thing. People are becoming more aware of it and there's becoming more education around it. The way that school systems are set up — not just colleges — is, one, inherently ableist and two, does not provide space for people to take care of themselves and their mental health, which I think is a problem. So again, accommodations that would help me would also help non-disabled students or students with mental health issues. It's something that could just help all of us. So why don't you just do it?

Christina:

And can stress be a trigger for some people's migraines?

Elizabeth:

Yes. So I — it’s one of those things I try not to admit, but I do think stress is one of my triggers, which is complicated when you go to college. And like this week, I had an exam, a project and four papers due. Like it was a stressful week.

Christina:

Yeah, I was trying to schedule this with you and I was like, “Oh God, I wish I could put this off but I really don't have time to edit if we record next week.”

Elizabeth:

Yeah, so I think, I do think stress is a factor but stress is one of those things that it's more difficult for me to manage. Because for food and water, okay, I know I need to eat X amount every Y hours. Okay, cool, easy. Stress is such this weird, ambiguous thing that's like, how is stress gonna manifest? And sometimes I don't think I have stress and then I get a migraine and I was like, “Oh, my subconscious was stressed about this thing. Oh crap.” And so because I can't realize it, I can't do anything to change it, which is probably the most frustrating thing about my migraines: no matter what I do to try to control them and keep it together, it just happens anyway.

Christina:

Yeah, I also have the same thing where, my freshman year, I was so stressed out. I'm pretty sure — like, I got acid reflux at age 19 somehow, and I'm pretty sure part of the reason was that I was so stressed out my freshman year. But if you had asked me at the time, I don't think I would have told you that.

Elizabeth:

Yeah.

Christina:

For me, like stress really affects my physical health. And my disability makes that a lot worse, because college is just very stressful when you're having trouble managing all of your assignments. Especially when we went to online classes, I had like, my accommodations weren't actually doing anything anymore. Because [my accommodations were] extra time on exams. No professor was giving out timed exams at that point.

Elizabeth Bagley:

Yeah.

Christina:

And I had more problems because it's a lot harder for me to learn in an online setting and my accommodations were doing less and so I was getting sick, like every other week. And I went to my doctor and I was like, “Why is this happening? I'm wearing a mask all the time. I'm not really going out of my house,” and he was like, “Well, your blood tests are fine. So have you tried meditating?” [laughs] It was just stress! And I was missing all all of this school. Because I kept getting, like, sinus infections all the time. Stress is something for me that, I think if school were made for people with a lot of different disabilities, I think they would probably be trying to make it easier to manage your stress and make it easier to manage your classes so that you're not so stressed out all the time. Because stress makes a lot of people's disabilities worse, and it makes their physical health worse. And it's not easy to learn when you're stressed out.

Elizabeth:

Again, I – I'm a former education major so I spent my first year of school learning about the education system and I think it has many problems. And one of them, I think, is the fact that we expect students to go straight from high school to college, no matter what they want to do, and you have to do college in four years. And if you do college in more than four years, there's something — I don’t want to say there's something wrong with you, but society perceives it as “Oh, you did it in five years. Oh, you did it in six years. What happened?” College is so stressful. I wish it would be normalized for it to take five or six years. Because, I did this to myself, but I'm taking 19 credits this semester. Which is a lot of credits! And that's actually – it's like the cap you can do in LionPATH. Anything above that you have to [specially] put in yourself. Anyway, I can handle 19 credits because it's something I've been working with but like, I still get stressed out. And I would love if professors would teach us ways to like, deal with stress and I wish college would give you more coping skills for many things and more life skills in general. But again, that's my beef with the education system.

Christina:

I think there's also a lot of times where I have so many assignments due in one week. And then sometimes it's two weeks where I have so many assignments due back-to-back and I get no time to myself, or maybe I could make time for myself but it doesn't seem like I could in the moment, and so I think it would be really nice if instead of doing all of that and then desperately trying to recover the next week and like, not get burned out. If I could just say, “Hey, I have way too much stuff due this week. Can I not turn all of this in this week so that I don't end up getting the flu next weekend because I'm so stressed out?” And I think also like in the real world that is how it works. Like I'm going into journalism.

Elizabeth:

Okay.

Christina:

Obviously journalism, incredibly difficult workloads, but also if you physically cannot complete everything in one period of time, there often is sort of leeway to say to your editor, “Hey, I can't really write all of this in one week. What do you want me to move around here?”

Elizabeth:

Exactly.

Christina:

Instead of professors being like, “No, you can't have an extension on that. You should’ve planned better.”

Elizabeth:

Oh my god. I hate that. I hate that so much when professors are like, “This is the deadline. I don't care.” I've had professors in syllabi before like, “This is the deadline. Plan for your WiFi to go out. Plan for deaths. Plan for everything. This is the deadline, no exceptions.” And I'm like, “Life doesn't work that way. Random stuff comes up that I can't control.” Like, the fact that the WiFi was out across campus yesterday for five hours. I'm like, “What do you– I can't do anything! What do you want me to do?” That's really frustrating. “Do you want me to take time for myself? Do you want me to like prioritize my mental health and well being? Do you want me to take this Thanksgiving break to actually, I don't know, take a break?” Rather than working on four papers and a project and studying for an exam.

Christina:

I got the flu the week before Thanksgiving break. And so I could do nothing that week. And then Thanksgiving break, I was trying to do some work, but I was also trying to like make sure that I recovered. And so now I'm back in school and I have, I think, almost 20 assignments that are due in like these last two weeks.

Elizabeth:

Nooo!

Christina:

And it's so difficult and it's sort of weird to me that my professors don't know this is happening.

Elizabeth:

I had actually a realization yesterday in one of my labs, where there were maybe 15 of us in the lab and I commented about how busy my week was and how this week felt like finals week. And everyone was like, “Yeah, me too.” And I was like, we're all HDFS majors in this room right now. I understand if this was happening across a whole bunch of different academic colleges, but why don't they talk to each other. You're in the same academic college. But a whole bunch of HDFS majors. If all of them are like, “let's do it this week,” you're gonna stress out your students.

Christina Baker 20:02

Yeah, this year. Most of my classes were like in three chunks. And so at the end of a chunk, they would give you an exam. So I would have like two weeks back-to-back where I was spending so much time working on these exams. And I did get 100% on almost all of them, highest grade in the class, which was like —

Elizabeth:

Good for you.

Christina:

I was like why are we structuring them like this, like all of these classes are giving you all of your work at the same time? Maybe we should encourage professors, just some professors to break up their classes a little bit more and have, like, smaller exams throughout the year.

Elizabeth:

Exactly. And I think one of my professors [is] just doing quizzes every week rather than big exams. I would so much rather have small chunks and do a small exam, a small quiz every week or every other week than have big exams that all pile on top of each other.

Christina:

Yeah. And like I don't need all of my professors to be doing that. For all I know, that might make my overall workload more but yeah, I would like if some of them considered it.

Elizabeth:

Yeah, just consider it. Maybe professors, if you’re listening. Think about it. And it's, it's so hard. Professors are like, “Don't spend every waking moment” — some professors are like, “don't spend every waking minute on this class. Go like have a social life. Rest, take time for yourself.” And I'm like, “How do you expect me to take 18 credits, have time for myself and a social life and get homework done?” There's so many things we should be doing as “good college students.” You can't hear the air quotes I'm making, but [laughs]. It feels impossible to be like “what do you -- what do you want me to do? What do—” something has to give and and then you get the stress and then you get the migraines and then everything falls apart and you have to start all over again.

Christina:

So we've sort of taken a detour about stress — [Elizabeth apologizes] No, I enjoyed it. I'm glad that we got to cover this on one of the episodes of this podcast, so I'm fine. No, it's fine. Back to how else we could help students with migraines.

Elizabeth:

Yeah

Christina:

What do you think of online classes?

Elizabeth:

I learn better in person, but that is also a personal preference. I mentioned earlier that lights are a big thing for me. Like, fluorescent lighting is garbage. I hate it. Bright lights, flashing lights, not it. So staring at a computer screen for eight hours on Zoom every day is exhausting. And it -- I would have to be so conscious of the fact that, okay, this class has ended. I have 15 minutes. I can't pull out my phone and look at my phone. I need to stand up, close my laptop and walk away to get my head out of my computer. Because otherwise I would get so many headaches. And I would just be like, my body would get so stiff from sitting in the same position for so long. I really did not like online classes.

Christina:

I've spoken to a lot of people who are like chronically ill or have trouble — they're like “Yeah, this didn't really work well for me, but there were reasons that I liked it.” Like when I was getting sick because of stress. And in my second semester of the pandemic year, I was taking a lot of in person classes. And I was like “Wait, you're not offering this online? I can't – I'm sick. I can't go to class.” I hate online learning but it is annoying to me that not all of my classes let me watch the lecture from home when I get sick.

Elizabeth:

Yeah again, as I said, I prefer in-person learning because that is a personal preference and that is how I learn best. But from an accessibility standpoint, having Zoom classes online is so much more accessible. I have a friend who has a chronic illness. She doesn't go to Penn State, she goes somewhere else, but she likes doing online classes because she has chronic pain and intestinal issues. And so if she wasn't feeling well or needed to use a heating pad, or needed to be in close proximity to a bathroom, being in online classes is so much better for that. You can turn off your camera and do what you need to do in a physical space but still be present for classes. And then, if you do have to miss a class, when they were recorded and posted on Canvas that — Honestly, I have a professor right now who is doing a hybrid class and will record lectures and so I know if I get a migraine on that day, I don't have to feel bad about skipping that class because I can go back later when I'm feeling fine. And watch it and still get that same information at a time when I feel better and not have a time limit on it. So as much as I hate online learning, it provided some really great accessibility accommodations. And so when people were so fast to go back to in-person learning, I was like, “Wait, there's an entire population who benefited from being online. Can you maybe think about doing some hybrid classes for, I don’t know, the 20% of the world's population that does have a disability, which is a lot of people?” So it just, it frustrated me.

Christina:

And that's how I feel about with all those news stories about offices being like, “Come back to the office! You have to come back to the office!” Personally, I hate being in one place all day. Like I think if I were in a job that was remote, I would have to buy one of those WeWork things. But I'm like, “Wait, I want to go back to the office. I would love to go back to the office. Please hire me somewhere. But also, there's a lot of people who don't and I don't really understand why you're making them be in the office.”

Elizabeth:

And it's something that — I follow a lot of disability activists on Instagram, and people were like, “The world has proven that it can give us these accommodations when it suits the abled population.” So when you're forcing everyone to come back to work, and the disabled population is like “Hey, remember those accommodations? Can we have those back?” They're like, “Nope, can't do those anymore” And we’re like, “Yes, you can!”

Christina:

So is there anything else that we haven't covered yet about what you think school would look like if it were made to optimize your learning considering your disability?

Elizabeth:

I don't think so. It's so interesting because I'm getting a minor in disability studies and it's fascinating to me how different disabilities are. I could go talk to – like I said, my uncle gets migraines. My cousin gets migraines, I could talk to each one of them. And for one of them alcohol is their biggest trigger. I have never had alcohol before, so I don't know if that's a trigger for me. But it's interesting how widely different it is. So, like you said the accommodations, the way the world could change to benefit me would benefit me, maybe it would benefit other people. But it's interesting that each of us have such individual needs.

Christina:

So let's move on to part three, which is how you cope within the current system. We've already talked about this a lot. But you know, it can't hurt to talk about it some more. So we've talked about the accommodations that you have. Are there any other accommodations that you would want?

Elizabeth:

This is gonna sound strange, but I can't use elevators very well. I get vertigo from elevators, and like my migraines, unpredictable. So it's not every time but like there have been times where we go like on class field trips to the library and they're like, “We're gonna go on the fifth floor. Everybody get on the elevator.” And I'm like, “I can't, I'll just I'll go where the stairs. I'll like take the stairs up.” And the building where I worked for two years actually. You needed swipe access to access the stairwell, but not the elevator. And I'm like, “I just need to get up to where I work.” And so… but putting in your accommodations “Hi, I can't use elevators,” is weird because for most of the time, it's not applicable.

Elizabeth:

And I feel the same way about flashing lights and being outside. So part of the bright light situation is the fact that if I go outside I have to be wearing my sunglasses. Because the sun is a giant bright light in the sky. It's overwhelming for my eyes. I'm photosensitive, is the word for that. But also putting in my accommodations “I need to wear sunglasses anytime we're outside,” it doesn't apply to most of my classes. But then there's when there are fire drills, I have to grab my sunglasses to go outside or if we do field trips or anything like that. I wish that could be in there. And it's actually has affected me too. As I mentioned, I'm in pep band and we play for women's and men's basketball games. And the BJC is a very large place and it is a very fancy place and so they have lots of lights and they like to use said lights. But one of the things they do is they project the Nittany Lion head on the crowd and it moves around. But when it crosses my vision, it acts the same way that a strobe light would. And so when that happens, and I have at this point have learned when that happens, I have to keep my head down. But me keeping my head down means I can't see the conductor so when we have to play I have to tell my friend next to me, be like, “Tell me when we're gonna play because I have to look down so the light doesn't cross my vision so I don't get a migraine.” And so those are things that I have to be aware of. And that I bring up to professors on an individual basis, because putting “I can't be around strobe lights” is a weird thing to put in your academic accommodations letter. Because in most classrooms, you're not going to be around strobe lights. They're just like some kind of awkward, weird things that I have to be aware of. And then I'll talk to professors about and be like, “Hey, actually, can we not do this?” Or like my professor showed a YouTube video and it was a video of a movie screen, but it was a not-great quality video. And so the lighting was kind of strobing, and I couldn't watch the video because it was enough that it wouldn't affect someone else, but because I am photosensitive I couldn't watch it. I couldn't get the content video and it was just like, it puts me in a lot of awkward positions. But it’s also, do I put it on my accommodations? Or do I not because it's such a niche thing that doesn't happen very often?

Christina:

I have a similar problem that you mentioned with a video, which is I have a sensory processing disorder called misophonia where certain noises will trigger people's — some people say it triggers their fight or flight mechanism. Some people say it triggers just intense emotions in them or it just makes them like extremely uncomfortable. And so mine is any mouth noises. If I can hear someone's mouth like moving around while they're eating or when someone opens their mouth very loudly or when someone's mouth is very dry. And so sometimes professors will like play a video and one of them was from the 90s. And maybe everyone's mouth was dry in the 90s, [but] every single person in the little documentary was making so much mouth noises. And I'm sitting there like, is it worth it for me to ask to leave the room right now? Like I am, it's kind of like pain, and how long is this gonna last? Can I like cover my ears? Or will that look really weird? And so I just normally end up sitting through it and being like [groaning noise], but I keep thinking maybe I should just ask to get out of this and, like, “please give me a transcript of this video.” But I don't know. I haven't done it yet.

Elizabeth:

But it's one of those weird things that – there's some ways that I'm very confident about who I am and what I do. But then there are other times like that, where I'm like, “I'm in a situation where I'm in pain. The best thing for me to do would be to leave. But how is that gonna look to everybody else in the room?” And I think that's, again, I'm an HDFS major. So think about these things. Part of that has to do with how females — I'm making an assumption about you, I apologize — I identify as a female. And there is a certain way that females are socialized to be people pleasers, sometimes, and to think about how we are perceived by other people. And I know that’s something that I've had to struggle with is setting boundaries and being like, “No, I need to leave this situation. Now.” There are some settings, like, when I'm with my roommates or my friends, they are very good at supporting me. But there are times in classrooms where I have sucked it up and I once gave an entire presentation about how a flute works when my hands were numb. Because when I was younger, part of my migraines was that random parts of my body would go numb, whether it be my hands or my tongue or my mouth. I gave an entire presentation, because I was so scared to leave, about a flute – which is something you have to hold and like play. While my hands were numb. I couldn't feel what I was doing, I had to look at the flute to do things. It's so hard to stand up for yourself sometimes. I wish I could put that in my accommodations. And be like, “I'm not good at sitting up for myself. So please believe me when I say this thing bothers me because I'm not faking it. If I'm saying I need this thing, it's because I need this thing or my brain will explode.” It doesn't actually explode. Thankfully, it stays in my skull but it feels like it's exploding. But yeah, so that was a little bit of a tangent, but I totally feel that.

Christina:

Are there any strategies or like outside help that you use to manage your disability that we haven't talked about yet?

Elizabeth:

I don't know if this counts or not, but some people take medication every day to prevent migraines. And because mine don't occur frequently enough, I don't do that. But I do take a series of vitamins every day. So I take riboflavin COQ10 and magnesium citrate. So I take those daily. That's a tool I guess that helps with my migraines. I jokingly call them my drugs, they're not drugs, they are over-the-counter vitamins, but I take those every morning. And it's when I get a migraine, when I'm in pain, I take over the counter medications. I mentioned this a little bit earlier, but I haven't seen a neurologist, someone who specializes in brain stuff and migraines, since I was in middle school. So that's something I'm actually going to do in the spring, is to check up and kind of reevaluate where I am. Because again, it's been almost a decade of me having to deal with this and it hasn't gotten better. It's just changed. And sometimes I think, I'm like, “Yes, I’m managing this really well. I am proud of– it's been six months since I've had a migraine. I feel great about this. Maybe I'm growing out of it!” And then I get two within three weeks of each other and I was like, “Okay it all went out the window. What happened?” I also, I rely on my friends and family a lot because I thankfully have the best friends in the world. My roommates are fantastic human beings. I love them so much. But when I'm struggling and when I'm in migraines they're fantastic. They say, “What do you need? What can we do? What do you want us to do? How can we be aware? How can we help you out?” So I rely on them to bring me food, medication, water, Gatorade, Powerade, anything, and they're fantastic. I love my friends so dearly and they know that this is a thing that I've been struggling with, that I'm getting to a point where I can say “No, I don't need to do this. I can't do this because of a migraine.” And I don't feel guilty about it with my friends.

Christina:

What advice would you give to other students who have migraines?

Elizabeth:

Figure it out. Which sounds really dumb and is really bad advice but I sometimes have to experiment through the pain and be like — okay, I said earlier that seven hours of sleep is my bare minimum. I've learned that through experimentation. And unfortunately, sometimes experimentation leads to pain. So if you're going to do experimentation on what may or may not trigger your migraines, do it at a time when you know nothing is happening. I actually changed the dosage of my vitamins over the summer, and I intentionally picked a week where I knew nothing was happening. So if I got a migraine every day, I would be fine. And I'm fortunate enough to say that I can be able to do that. So if you, if you struggle with migraines, the internet has a lot of great resources but migraines are also so ambiguous that 100 different things could cause your triggers. So if you're going to experiment with your triggers, I'd say do it carefully. Do it in a way – tell, tell other people that you're going to do it. Don't just do it. Because then people will be like “You were in pain all this time? You didn't tell me?” Like let your support system know, whatever your support system may be, take a week or a time that you can do it.

Elizabeth:

It's so hard but learn how to stand up for yourself. Learn how to set those boundaries. Figure out what's important to you. And like focus on those things that are important. If you can find ways to decrease your stress, I'm still working on that one. But like I know that stress manifests for me in my body. And so I have found ways that I can stretch and rub out the tension and that helps me but again, that all comes through experimentation and it's hard. It sucks and no one understands it because no one is in your brain and no one feels to me that you do. So I would also say if you're struggling with migraines, your pain is valid. The struggle is real. And I know you're thinking about it every second of every day. Because other people tend to remind you, “Oh do this, do this.” If you're struggling with migraines, I know how much you think about it and you're not alone. There are people out there who think about it every second of every day.

Christina:

Oh that reminds me. You, when you're talking about people giving you suggestions if you get people —

Elizabeth:

Unsolicited medical advice? Oh God, unsolicited medical advice. Ugh. Honestly, usually for me what it is is people are like, “Oh, you get migraines? These are my migraine triggers. This is what I do.” Okay, great. Yes, I love that that works for you and you found something that works for you. But I've tried that, it doesn't work, or I’ve tried that trigger thing, that trigger food, like the deli meat thing. Deli meat doesn’t trigger me. And so it's – honestly the most frustrating [is] when people remind me to eat or drink water or get enough sleep or wear my sunglasses. That part is more frustrating for me because I'm like, “Yes, I'm thinking about this constantly.” I mean, my Fitbit tracks my sleep every night but I do the math. Okay if I'm waking up at 8 a.m. I need to be in bed at least by 1 a.m. I'd like to be in bed by 11, I do that math. So obviously it bugs me more when people are like, “Did you do this today? Did you take your vitamins?” I'm like, “Yes. I did do that today. I'm thinking about it all the time.” I, thankfully, don't get a lot of unsolicited medical advice. But also: don't give people unsolicited medical advice. Especially if you're not a doctor. Just don't do it. I don't care, Karen, if yoga helped you. It doesn't help me!

Christina :

Apparently, I'm, like, mildly intimidating. And so I think people just sort of understand that if they tried to give me unsolicited medical advice, I'd be like, “What do you think you know here that I don't?”

Elizabeth:

Yeah.

Christina:

I think I have to manage this all the time. And I think I know the consequences of me not doing X, Y or Z or doing that thing better than you do.

Elizabeth:

Seriously. It's like it's my brain. It's my body. I've been dealing with this for X many years.

Christina:

Especially with yours. The result of you doing something wrong is severe pain.

Elizabeth:

Yes.

Christina:

Why would you be forgetting to take your medication?

Elizabeth:

Exactly! Do you think I want to be in the eight hours of debilitating pain where I can't do anything? Do you think I want to be put in a position where I can't see straight, literally cannot see straight?

Christina:

And you mentioned social media accounts you follow? Do you have any books or social media accounts to recommend to people with your disability or people who want to learn more about it?

Elizabeth:

Yes. So “Disability Visibility” is a series, it's an anthology compiled by Alice Wong. It is fantastic. I made my roommate read it. I'm making my mom read it. It's so good and it covers such a wide breadth of different disabilities because the short stories are from people of various different disabilities, and talks about how much the disabled population struggles because the world is not as accommodating as people think it is. So “Disability Visibility” compiled by Alice Wong, highly, highly, highly recommended. I haven't come across any books about people with migraines so not specifically mine, but I do– I will say this might sound cliche but diversify who you follow on Instagram. I mentioned this earlier. I'm a huge Disney fan. I have a Mickey Mouse water bottle [with me]. So I try to follow creators who love Disney, because that’s something we have in common, but maybe they are a person of color, or maybe they have a disability. Or maybe they're from a different socioeconomic status or they're from a different part of the world. Try to find people on the internet who have the same interest as you do, but come at it with a different perspective. It'll teach you a whole lot. Also, there are a whole bunch of people out there who can make fun, creative content for free, so support them when you can. I know as college students, that's difficult for some of us, but engage with their stuff. And I mean, everyone's going through Instagram anyway. So why don't you just add one more different face to your Instagram?

Christina:

And who do you follow about disabilities specifically?

Elizabeth Bagley 11:39

Living with Claireity, she has POTS, Postural Orthostatic Tachycardia Syndrome, but also has tethered cord syndrome and does a fantastic job talking about disability in general. So I follow her. I follow, something Eliza. Her name is Eliza. She's from England, which isn't helpful, I'm sorry. [note: it’s “Disabled Eliza”] She's in a wheelchair and so she talks – she also has an invisible disability. It's interesting because England has this program where people with invisible disabilities get sunflower lanyards to let other people know that they have an invisible disability. Because people like me, who have invisible disabilities, people might – I don't need to use ADA parking spots, but a lot of people would be, like, grumpy about it. So it's interesting to learn about how London deals with it differently. Oh, Jessica Kellgren-Fozard, also another British content creator that I follow with a disability. She is Deaf, has Postural Orthostatic Tachycardia Syndrome as well. She also just so happens to be queer, which I am as well. So yeah, those are the three. Her name's Jessica Kellgren-Fozard, Jessica out of the Closet. I tend to follow people with different disabilities than I do because I, again, have a minor in disability studies and I want to learn about a wide range of people. Because me telling my story about migraines is me telling my story about my migraines. It cannot be generalized to everyone with migraines. So yeah, those are just some fantastic people that I recommend following.

Christina:

And what advice would you give to teachers or professors who have a student with your disabilities?

Elizabeth:

Listen, just listen. And I've had professors before who'll be like, “Oh, I also suffer with migraines. I understand.” And sometimes that's helpful, but other times it's like, the way you handle your migraines may be different in the way that I handle my migraines. So listen to your students, believe your students. And don't just say something once, reinforce it. Professors that say they care about their students, but don't have policies that support what they say really frustrate me. So just for your students, show that you care and look at your syllabus. And make sure that caring is reflected in your syllabus. Because I have some fantastic professors who were like, “I see you as a person I understand college sucks sometimes.” And those professors are more helpful than the ones who were like, “The deadline is the deadline. But I care about you as a human being and I want you to prioritize your well being.” Actions speak louder than words. So look at your actions and your words and see how they compare to each other.

Christina:

Well, I think that is all of my questions.

Elizabeth:

Okay.

Christina Baker

So, thank you so much for your time.

Elizabeth:

Of course!

Christina

Thank you for listening. I'm your host Christina Baker, and this has been Beyond Accommodations at Disability U. If you'd like more information about the topics discussed today, please check out this podcast’s website and make sure to listen to the other episodes. As a reminder, this podcast is intended to be one part of a larger conversation about disability and education and disability in American life. I hope you keep listening.

Music: “Shaolin Dub” by Skinwalker