[Me/Us/U theme music fades in: “Night Owl” by Broke for Free]
Kiera Bertrand: Welcome to Me/Us/U a podcast produced by students at Susquehanna University. Here we talk about a wide range of topics to give authority to undermined voices and college students. On this episode, called “Tuning in to Disability” one of our hosts, Hannah Aud, will give a rundown on disability legislation and talk to her roommate, Kelly Krotzer, about their worries and hardships as students who do not have accommodations on campus. Then Amanda Gillette will discuss self-advocacy and chronic illness with our guest Joanna Messineo, who will talk about her experience on campus, give advice, and perform her poem “Chronic.” And lastly, you will hear from me, Kiera Bertrand, as I interview my sister Megan about her journey towards self-advocacy as she transitioned from high school to college.
[Music fades out]
Hannah Aud: Let me break something down for you real quick. Disability legislation is, in the eyes of history, relatively young.
[Light techno music begins to play: “Trapped in the Upside Down” by Jim Hall]
To be very clear, any form of proper legal protection for persons with disabilities did not come into play in America until 1973, a mere 48 years ago, as of 2021. This legislation, section 504 of the Rehabilitation Act, simply stated that no persons with a disability could be discriminated against by any program or activity receiving federal financial assistance. At the time this did apply to public colleges and most private colleges, however, it excluded anything that wasn’t a recipient of federal financial aid. It wasn’t until 1990, 17 years later, that the Americans with Disabilities Act or ADA came into play. This act finally made it official: in Title II if states that all public entities (including state government, public school and public colleges) are prohibited from discriminating against people with disabilities. Title III of the act further prohibited entities that operate places of public accommodation from discriminating against persons with disabilities by denying them full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations they provide.
[“Trapped in the Upside Down” by Jim Hall]
[Light, slightly sadder, techno music begins to play: “Hope is Not Lost” by Jim Hall]
It’s a lot of detailed legal jargon that essentially means, for the intents of our subject matter, that colleges could not discriminate against people because they had disabilities, and that given the proper information, they had to supply the proper accommodations for said students to be able to work through college at and equal level to the non-disabled students around them. It paints a pretty, if not somewhat vague, image around how people with disabilities are treated in college. However, there are some not so pleasant side effects of this act. For one, it is not legally required for a student to disclose that they are disabled. Which that right itself is not a bad thing, it just become complicated with the fact that a school is not legally required to search that information out, and without the disclosure, a school is therefore not required to offer accommodations at all. On top of that, in order to properly disclose that you are in fact disabled, you are required to have the proper documentation to prove that you are in fact disabled. If you’re wondering what constitutes as proper documentation, so am I. Something important to realize, is that there is in fact no set documentation that is necessary, at least no source provided such information. Presumably the institution at which you were trying to get accommodations, will tell you what documentation you need. But this led to a glaring problem I discovered in my research: there was no basic distinction about where you should start in trying to get said documentation.
[“Hope is Not Lost” ends]
[Upbeat, gentle techno music begins: “Devotion” by Jim Hall]
And if this didn’t already sound stressful enough, it’s also important that you realize that being 18 an older legally makes you an adult, therefore the assumption is that you will be disclosing and finding all of the proper information by yourself. Plus, the fun little added bonuses of having to rely on other people, such as your doctors to be timely about providing you with certain documentation, because the one set piece of documentation you definitely need is an official diagnosis. All of this is then topped off with the very able-normative bow: because if you, in the end decide to not disclose your disability, then the school is legally allowed to automatically assume that you are not disabled.
Now let’s say you went through the proper channels, you got your necessary documentation, and it’s official, you now have accommodations! Yay, but what does that mean. At Susquehanna University, accommodations are not necessarily as simple as waving a piece of paper in a teacher face and boom you get an extension. Instead, the process really just opens up a channel for communication. Accommodations are class specific, the disabilities center on campus simply sends an email to your teacher, and it is up to you to discuss what specific accommodations you need for that class. You must repeat with all classes.
If you are beginning to notice a pattern here, it’s not by mistake. Self-advocacy is important from day one of being an adult. There are often people who can help you along the way, but that’s not always the case for everyone. Then there’s the added bit of stress that I personally, as someone with ADHD, can’t help but constantly come back to. Why do I need a service on campus in the first place if I myself am still in charge of the accommodations I get?
[“Devotion” by Jim Hall ends]
Hi, my name is Hannah Aud, I sat down with my roommate Kelly Krotzer, a fellow SU student with ADHD, to discuss our fears and the hardships we face by not having accommodations to back us up on the campus.
Hannah: Tell me about your experience trying to get accommodations.
Kelly: Well, I don’t have accommodations, and, uh, that’s mostly due, less because of the campus. The campus actually feels really accommodating from what I’ve heard. And basically, like when I had wanted to come early when we were doing remote learning and like staggered returns and I had wanted to come early, and I said something about ADHD. In my note to like residence life or something they had sent back the form to get accommodations, which was really nice of them. However, it’s more of a issue on my end. I’m just not close with my psychiatrist. I honestly don’t really like her and so it’s really hard for me to work up the courage to call her office. To get her email so that I could send her the thing and then get that back to send it to the school.
Hannah: See I had a, I had like a similar experience, but like slightly different. Where I did contact my doctor. My mom was really helpful because she’s a lovely human being and she was like, yeah, I’ll call your doctor for you. But we did, contact my doctor and my doctor got the form in originally but she was really vague because, we didn’t know what information we needed. And so, the office was just like, yeah, just contact your doctor again and get another note. And so, we did, and my doctor never got back. And at that point I was just like the year had started and I was like I just won’t worry about it anymore.
Kelly: I mean, yeah, my psychiatrist. I think I brought it up to her like even the beginning of sophomore year before covid. Something about accommodations, just ’cause I was getting a little bit worried about how the classes might be getting harder and she was like, “well, that would be something that we should have done before you entered college. At this point it’s probably too late.” And that’s what I got. So, I really don’t like my psychiatrist and I hopefully want to change her in the future to someone who is easier to contact to get accommodations for, I think.
Hannah: How do you feel about trying to talk to teachers about your ADHD, knowing that you don’t have accommodations?
Kelly: I’m very insecure. I don’t really talk to any teachers at all. I basically like vague around it for some teachers where I’m like, yeah, I just have trouble paying attention. I just like I just needed, I just need you to repeat like some instructions or like can you clarify some stuff. I just don’t. I never say it outright, I just vague around it.
Hannah: I mean, you know something that like I have always kind of felt. When I was younger, I was so ashamed of my ADHD and I mean I knew I had it ever since I was a younger age. So I can’t imagine, like it took me years to start to tell people that I had ADHD and, you know a big part of it was because I had to take medication for it. And I was like really ashamed of having to take medication for anything just because of the stigma around that. And I can only imagine that like learning about it in high school probably is really stressful. Because I was like as a kid who knew I had it, it was still really stressful.
Kelly: Well, I mean. The thing is, is I didn’t know in high school though. I got diagnosed and I was like. I got medicine for it. I mean, that’s well, not even medicine. It wasn’t even technically pills. It was food supplements because my parents didn’t want me medicated. I think because of the stigma around a lot of ADHD medication being stimulants. Just like not knowing what that would do to me or whatever. But just like back of the matter is, I remember going through the diagnosis process, but like didn’t really process what that meant. It was like that first year they were like yeah, you have something, but I didn’t even pay attention long enough to know if it was ADD or ADHD, which at the time were two separate things. Now being combined into different parts of ADHD. And it’s just like so I didn’t even know I had ADHD. In high school I just went about the rest of my life like nobody told me anything. I didn’t really know anything. I went to see the psychiatrist and all she wanted to know was how I was doing in school and I’ve always been a really good worker in school. I’ve always been really good at keeping up with my assignments. It was just that, blip in high school, that’s where I was like, just failing everything, but like once I got back on track, there was no issue and I was like yeah, I’m a normal person like this is what normal people do. But it’s more of just like because it’s so unknown and the most people know about it is like, the hyperactive 5-year-old in they’re like kindergarten class and I really just didn’t discover anything until last year where I was like, do I have ADHD or do I have ADD? Time to find out and like what does that actually mean? Because it doesn’t mean what I thought it meant, which was just that: I was like everyone else except I had this thing.
Hannah: I think that’s what sucks about the information that’s out there about ADHD. Is that, like literally, despite the fact that I’ve known my entire life that I had this, I literally didn’t learn some of the symptoms that I was experiencing until college.
Kelly: Yeah, and we were, we talk about this a lot like as roommates like it comes up a lot. But I mean we weren’t just even talking about this morning. That part of the reason why there’s not a lot of information. All the information I got about ADHD is from the ADHD communities I found online on Tumblr on Discord on Instagram. It was all these people who have ADHD coming together and talking about their experiences and giving names to their experiences. That are not all necessarily diagnostic criteria in the official like book that psychiatrists and like psychologists use to diagnose ADHD. And so, it’s like in that sense, I feel like there’s just a lot of stuff out there that doctors wouldn’t even know to tell us, because they don’t even know, especially if they don’t have ADHD, that we experienced some of these symptoms, but I totally get what you mean. I’ve always had a name for things, but like it, it just it sounds awful and I. This is a thing, a lot of ADHD people go through where it’s like the name for what they have, it’s like stupid, lazy, it’s just all these kind of things where it’s like “oh I must be dumb because for some reason when I was thinking all the things and I was talking to other people I was carrying the milk to the garbage can and not to the refrigerator like I couldn’t like process two things at the same time.” Or a bunch of other stuff where I was just like, oh, it’s just quirks of being me, but like it was really just ADHD.
Hannah: Like when I was younger I just had a really intense personality and I was really insecure about it and I think this this goes hand in hand with masking I think as well. And for the listeners who don’t know what that means, by masking we do not mean the physical act of putting on a mask, something we are all very familiar in the time of COVID. What we actually mean is when a disabled person tries to hide their symptoms of their disability in order to fit in with other people around them. And the thing is that I was constantly terrified that people would think. I was weird.
Kelly: Yeah, I come. The thing is, is like there, there’s. There’s a lot of it has to do with, like there’s an anxiety there and it’s completely illogical. But with me and this is how I understand how a lot of other people have experienced it is that it wasn’t illogical at a time. It was logical because people did, dislike me at some points. And I didn’t know why, and it was obvious and this is just ’cause children are awful in general and can’t do things subtly at all. But even when it wasn’t true in the future, there’s still be anxiety and that’s something I’ve been dealing with a lot this semester. And I mean, now I’m much more confident in our Friend Group. I feel like but. But because of the way COVID has made things kind of different, and like being on zoom. I feel like zoom and COVID has kind of like reset certain social norms and anxieties that I had ’cause things aren’t are different now like we were. We were completely online. And then, like expectations, were different so.
Hannah: I’ll end with this question how do you, try to advocate for yourself? In a public setting, I see your eyes widen.
Kelly: I really don’t, and that’s a big issue. And I mean we talked about this a little bit earlier in the podcast where I just like I, I am really big about things. I mean like last. The semester before last semester when COVID really hit, and everything suddenly went online, and I had missed one of my deadlines for one of my classes. For the final, the final paper. I like think I just ended up emailing the teacher and been like hey like, “Hey, I just completely misinterpreted the date I,” you know, “didn’t understand which one was which and I was just like yeah, can I just I?” I mean, I was really proactive about it at least and, he gave me a really low grade and then said it was the best writing I ever did in that class. Which was very ironic, and I laughed about it and I still laugh about it, but he was pretty open because I had. Yeah, I was like one of like the first people I think to email him, and I emailed him like right away. And was just basically like if I can get you this by tomorrow, like can I. You know, like I had set the date I had made my told him like what this is what I’m going to do, and I think he at least pre appreciated that because. Like the following email he sent me was like “Yeah sure,” like, well like you can do that but yeah, I mean at this point it’s just it. I should really try to start advocating for myself. But unless until I get a better psychiatrist or something until I, you know, actually get accommodations, I’m not really going to feel comfortable advocating for myself until I have paperwork to back me up. I feel like and that just has to do a lot with like my own personal anxieties, but it’s also something that’s like it’s true like there are so many people in the world who don’t believe that adults can have ADHD. They think it’s something that only children can have, and you will grow out of it. There’s many people who don’t even believe ADHD exists. Same with like the way that there’s a lot of stigma that exists around ADHD, the same thing that exists around autism. Where it’s like some people think that vaccines cause autism: not true. Some people think that cell phones and TV video games cause ADHD and like that’s also NOT TRUE! And so, it’s just like there’s so much misinformation out there, so I don’t really feel like I’ll ever really be comfortable until I have the paperwork to back me up. You know, a therapist or a psychiatrist to back me up as well. And then even a society that can back me up. You know, ’cause? It’s like, even with paperwork, even with a therapist and a psychiatrist that like, I trust, there’s always going to be those people, if we don’t have that much information and misinformation spread around, there will be times, I think even like, and I’m maybe I’m being pessimistic. But I also know, from other people’s experiences that this is true. That they will show the paperwork and they would be like, here’s my therapist who diagnosed me with ADHD and that person will be like “Nah, I don’t believe you” and sometimes it’s the people who are so close to you that don’t believe you. Also ’cause they’re like “I know who you are and you’re not ADHD.” So, yeah no self-advocating until more things behind me to help me out.
Hannah: I-I mean, I think that’s fair because I’ve had it for so long. I’ve never felt the need to always have that backup paper, but I remember I wanted it for that reason, I just wanted people to believe me.
Kelly: Yeah, and the thing is, even though I’m not self-advocating in like a wider society in my own household, I am self-advocating because my parents do know I was diagnosed with ADHD and the thing is pretty sure most of my family is ADHD. But the thing is, is I do like now I try to self-advocate where I’m like “whoa whoa whoa, I like did not process what you said at all whatsoever” or my or if they’re giving me instructions for like chores or something, I’m like, “whoa, please one thing at a time I cannot remember everything at once,” like you know. And maybe I don’t say, it’s because my ADHD, but I am trying to self-advocate in some manner of how this affects even just like our household life. You know, like knowing that it’s like “oh,” and also self-advocating for myself because it’s like at this point for so long I didn’t really know why I did certain things and then now I do. So now I know like, “oh, I will not remember all these instructions, so I need to stop this person from trying to give me all these verbal instructions and you know, start from the beginning.” Or like I need, uh my “I can’t hear this person over like the TV and another person talking, I will need to ask them to repeat themselves” or even be like “well like can we go somewhere quieter so that I can actually understand what you’re saying.” So, I mean it, it just took a lot of different things that it’s like now that I know I can also like self-advocate for myself in the sense of like.
[Upbeat, gentle techno music begins: “Devotion” by Jim Hall]
Acknowledging my own issues and like working with them instead of thinking and trying to pretend to be something that I’m not.
Hannah: I’m glad they brought it up. I’m glad that you brought up like, I think a big part of self-advocating that a lot of people don’t realize is just cutting yourself. Some slack and like being nicer to yourself about things. Like you were saying earlier a lot of people, the terms were like “Oh, you’re just stupid, yeah, you’re lazy, you’re dumb” and like you would say that to yourself because you didn’t really understand it. And I feel like that’s how a lot of neurodivergent people need, and it’s kind of like, this mixture of, like you know, trying to love yourself more and recognize that like hey, no I’m not stupid. I’m not dumb. This is just a part of it. It’s just a part of me. It doesn’t define me, and I can be nicer to myself. I can respect that I do this, and just try and work forward now knowing that this affects me. I feel like I’m myself am slowly learning, how to just tell people right off the bat. I have this thing, uh, you’re probably not gonna understand it, but it affects these things and just know that like if this is happening, it’s because of this. It’s not because I’m trying to be rude, it’s not because I don’t care. I can’t control it. And you know, I think, like what you said, being proactive with emails, even if you’re not fully comfortable being like “it’s because of my ADHD” just being like “hey, I got confused. I like I it’s a mix up can we talk about it? Here’s the alternatives I can do this.” I think you know that’s probably I would say the first step to self-advocacy anyway is just respecting it within yourself and coming to terms with yourself and the things that affect you.
[Music fades out]
[Upbeat, yet calm music begins to play: “Soft Inspiration” by Scott Holmes Music]
Amanda Gillette: Hi, I’m Amanda, and I am involved in Susquehanna’s Slam Poetry Club. During the Fall of 2018, the Slam Poetry club partnered with FUSE, the Forum for Undergraduate Student Editors, to hold a Slam Poetry Open Mic during their annual National FUSE Conference. During that open mic, my classmate Joanna read an incredible poem about her experience with chronic illness and disability. The entire room was moved and impassioned by her poem, and it made me want to know more about her experience, as it revealed something for me about disability that, despite my own experiences with chronic issues, was not apparent before.
This is Joanna Messineo’s poem, entitled “Chronic”.
[Music fades out]
Joanna: Chronic: Because pain is complicated
It’s been 1770 days
There was snow on the ground outside and my house was warm and sluggish
I took 2 advil and a nap
It didn’t help
I was 15
It’s been 1718 days
The school was a chaotic purgatory of noise and movement
I only made it two hours
I never went back
It was my birthday
It’s been 1695 days
The doctor’s office was sterile and cruel and I couldn’t duck away from the flourescents
“It might never go away”
I wanted a second opinion
The second opinion agreed
It’s been 1588 days
I lay down in a porcelain tub that was cold and dark and I didn’t move or eat
My dreams were the only place it didn’t hurt
If I fell asleep long enough, I could live in the dreams and leave the pain behind
It was a fantasy
Three days later I asked for food
Decided I didn’t want to lose like that
It’s been 1408 days
The church was soft and crowded and Silent Night suffused the air like the walls themselves were singing
I cried until I couldn’t see
For every day, for every memory, for every moment
It had been one year
I have chronic pain and I’ll never be the same
Everyone thinks they know what pain is
At least a little bit
You’ve cursed when you caught your toe on the edge of a desk and jumped around until you could think straight again
You’ve strained a muscle so that every time you move it pulls and twitches and you don’t ever want to move again
You’ve gotten a headache where you can feel your pulse throbbing in your temple and all you want to do is lie down and sleep until it’s gone
Some of you have had migraines where lights snap and flash and you have a mental timer ticking down how long you have to get to the dark before you’re in trouble
How long could you live like that?
How many days could you get up, stand up, go to work, go to school, have a conversation, be kind, eat dinner, exercise, laugh, have dreams, be motivated, keep your eyes open all day
How many days could you keep waking up?
Do you believe me when I say that I’m sick, when I say that I’m in pain?
If I had a dollar for every time I’ve heard that one phrase that separates the people who understand from the people who never will
You don’t look… sick
Well what does sick look like, tell me that
What should I look like that makes what I am fit into the narrow and perfect view of what you think I should be
What is pain supposed to look like
One tear falling artistically down my cheek?
A bandage around my head with little curls of hair falling teasingly around it?
My face delicately twisted in mild suffering so that you will know that this girl is hurting?
How about when I step into the clinic and my heart races with panic because even though I’m just there with a friend, my body still gets dizzy with panic and fear
How about when my roommate has to sit in the dark because I can’t have any light and she has to practically carry me to get food because I can’t stand up without help
How about when a friend says something and instead of being kind I snap something rude, because even though it’s not an excuse I’m in so much pain I can’t even remember how to be a person, let alone a nice one
and I keep myself up all night wondering if this is the time that they’ve had enough of me
Do I look sick now?
But you don’t see any of those moments because I wrap them up inside my skin and when my blood seeps out through the rough edges that I didn’t stitch up tightly enough, I wear red so you can’t tell
I don’t look sick because when you see me, I’m smiling and I’m laughing and I’m waking up and I’m going to class
and when I tell you that I have chronic pain or that my head hurts a little bit more today, I do it with a self-deprecating smirk
like the biggest problem of my entire life is a “what can you do” joke between the two of us because I don’t want to make you uncomfortable by telling you that inside, I feel like I’m dying.
And I smile because I’m happy. And I laugh because the world is full of joy. And I didn’t always get to have those things.
I lived in a dark room all alone for almost three years.
Can you imagine that?
Drowning in a sea of black.
Choking on my own pain, breathing loneliness instead of air
Waiting for the point where I died simply because I wasn’t living anymore.
Watching people walk away and never come back
What are we supposed to do, come sit in the dark with you?
We didn’t think there was a point inviting you since you probably couldn’t come anyway.
Don’t you think it’s kind of rude that you’re asking us to go so far out of our way just to see you?
I know I can’t do much, I just, I miss my friends
I’m so alone and I. I needed you
And instead I watched you leave
So I lived alone with my ghosts and my demons and the pain that curls into all my empty corners
and all the cruelty that everyone has ever said that I could hear more clearly than my own name
And I lived there for years
So don’t tell me we’re the same when you get a headache and suddenly you “understand”
Don’t tell me we’re the same because your old softball injury twinges on rainy nights
Don’t tell me that we’re the same because we both have homework
Do you want my suffering? Do you want my life?
Pills that made my whole body tense and shake and seize until I was gasping for breath
Antidepressants that I went off in a month that left me shaky and suicidal and carrying around a note that said “it’s just the chemicals” so every time I wanted to die I would remember that it wasn’t
real
Even though it felt more real than anything had in years
Botox shots that felt like shards of ice that hurt so much that my body went into shock
47 needles
Going back the second time was worse because I knew what was coming
Does that mean I win?
This suffering game that everyone in college wants to play where how much stress you’re under and
how badly off you are gets chalked up on little medals you can use to degrade other people’s problems
If you all want to play the game so badly, here I am! Do I win yet?
I’ll tell you a secret, anyone who can win that game has never wanted to play
Back there, in that room, in that darkness. I died back then.
But I came back
And that matters so much more
The sun shines so brightly some day it feels like it’s burning my skin and I want it to burn the darkness out of my blood so that it rains down like sparks from my skin
I want to stand outside in the grass and breathe in the clean, wild air like I’ve been deprived of oxygen for years
I want to grab everyone that I care about and wrap them up in love and laughter and hold onto them forever
I want to go to school and learn and succeed and follow the dreams that for so long I wasn’t sure I was even allowed to have anymore
My days are variable
Some days are easy and good
And some days are heavy and slow and I feel the darkness pulling at my edges like raggedy fingers plucking at a shroud
Some days the pain whispers nasty things in my ear that I can’t lean away from
Some days the whispers are out loud, and they come from somewhere outside my own head
Those are the worst days
But they are still just some days
And it doesn’t matter if I keep falling down for the rest of my life as long as the number of times I stood back up is always one higher
And I will find the life and the love that I want and I will don it like a gleaming armor as I face my demons and hold my ground
Saying, “you are not stronger than me”
It’s been 839 days
I stood in a shower under a spray of water so hot it burned my skin
I was screaming
I couldn’t keep living like that
I made a promise
It’s been 776 days
The car idled in front of the low-slung building and the asphalt was hot under my shoes
My dad grabbed my hand before I could take a step
“I’m so proud of you”
I was 18
It’s been 499 days
Her eyes twinkled as she handed me a crisp envelope marked with my name
It was the college recommendation she’d written me, it read
“She’s the strongest person I’ve ever met”
It broke my heart and knit me back together stronger
It’s been 435 days
The room was an empty shell with two sets of bare bones furniture
I moved in with an angel of light and humor who has never left me alone in the darkness
She lifts me up no matter how far down I fall
I’m so happy
It’s been 5 minutes
I got up on this stage and said things out loud that have always been secrets
I am stronger than these stories
I am every single one of these moments and so much more
I am who I am
I am a student
a teacher
a writer
a singer
a dancer
a friend
I am a human being
I am chronic pain
And I am more than my pain
And the world is huge and full and bright and wild and good and it’s for me
It’s mine
And I want it more than I’ve ever wanted anything and I want it more than the darkness wanted me
And it’s for you too
It’s your world
Why are you waiting?
[Upbeat, cheerful music begins to play: “Upbeat Party” by Scott Holmes Music]
Joanna: My name is Joanna Messineo. I’m a senior here at Susquehanna; I’ll be graduating in just about a month. I’m an early childhood education major. I’m currently student-teaching in a preschool classroom and a second grade classroom, and I also have a minor in psychology.
Amanda: OK, well, that’s Joanna as an SU student. Who is Joanna really?
Joanna: Yeah, that’s… I thought we were starting off with softball questions!
Joanna: I’d say one of my defining traits is, I was recently described as someone who walks into a room and immediately feels like they should be in charge of that room, which could be negative in some contexts, but I like to think that, overall, it’s very positive. It’s that sort of confident leader ability. I like to be the person with a plan who walks in and says, I think I can improve this, I think. I know how to help the people who are here, how to make the room a good environment. Being a teacher is definitely more than just what I do for a living; it’s definitely who I am. Getting that love into a room and building people up into the people that I want them to be, or that I think they can be.
I think I’m passionate about most everything that I do. I don’t do things unless I love them a lot. When you have a chronic pain, something like that, you just don’t have time in your life. You don’t have the energy for things that you don’t just wholeheartedly love. So, the things that I do, I love, and I think that comes through and who I am.
[Music fades out]
Amanda: Tell me about your experience with disability.
Joanna: My experience with disability started about 7 1/2 years ago. I woke up one day with a headache that I thought was just a normal run-of-the-mill headache and instead, it just got worse and worse and never went away, and I haven’t had a pain free day in the last 7 1/2 years. It feels like migraine-level head pain, right in the front of my forehead. I’ve been to four neurologists, I’ve been on countless different medications. Nothing helped. I was told that I wouldn’t be able to go to college, I probably wouldn’t be able to be a teacher or follow the career that I love, do any of those things, live a quote unquote “normal life”… But I am very, very stubborn, and I decided that I wanted those things, and I was going to take them!
At this point, I manage mostly through lifestyle choices. I’m very healthy, I eat well, I exercise, stuff like that. Not that these are cures, but these are things that help me maintain a body that is strong enough to function under chronic pain conditions, and mostly just mentally. I stay focused on what I love and what I want and the things that motivate me to keep going, and that keeps me sort of strong through it and keeps me knowing that even when there are bad days, as long as I get back up from the bad days, then I haven’t lost.
Amanda: I love that.
I asked Joanna what it was like to be a Susquehanna student with disabilities, and she had a great metaphor for her experience.
Joanna: So personally, as a student with disability, it’s always a challenge because there is always this sense of: I am running the same marathon as someone else, but I’m doing it with weights on my legs and nobody cares that I have weights on my legs–they just care what place I’m finishing in. And so there’s this sense of “I’m always coming last, even though I’ve worked like twice as hard”, it feels like, to have done that and so that is very frustrating and definitely can start to wear you down.
Amanda: So what do you do when you have these weights? How do you find the motivation to finish the race knowing that you’re at a significant disadvantage from the start? What makes you keep running?
Joanna: I think the best way to combat that is just to find positive things around you that keep you going and remind you that that your fight is worth it. So I have definitely had days where I’m like: “Why am I fighting this hard? Like, I am in pain all the time; I should just go take a nap!” But finding those things that that make it worth it has been what’s most important for me.
Amanda: Joanna shared that she has had significantly fewer absences this year than freshman year, and says that every day she is getting better and better. Not physically, but better and better at handling her chronic pain, at finding the right coping strategies and at living life with her disability.
So Joanna, you’re very academically involved. You always have been as long as I’ve known you, and I know the academic side of college is one that’s extremely important to you. What challenges has your chronic pain brought for you as an SU student?
Joanna: So I’m actually going to take this question back to high school a little bit first. Before I had chronic pain when I was in late middle school, early high school, I was almost failing. From 8th grade into ninth grade, I didn’t make it into the honors English class, even though that’s one of my huge strong points academically, because I just didn’t care that much. I didn’t have that motivation. And so I would get hundreds on tests and zeros on homework. And that’s a 50. And now you’re failing.
In a way, my chronic pain has helped me academically, so to speak, because I suddenly appreciated school. I was out of school in high school for 2 1/2 years, just doing classes virtually and like trying to find a solution to my headache (which I never ended up finding). But once I came back, I was like “Oh my gosh, school! Like, getting to learn things and be with people! Oh my gosh, I love this!” And so suddenly I was super motivated to do my best and to really bring my A-game. So that’s what I was able to do in college was really dedicate myself. I love learning new things and I think part of being academically successful is that ability to conceptualize your classes not just as “I have to be there, I have to write this like drudgery assignment”, but “I am learning new things and learning new things is really cool. And this essay is how I get to talk about the new things that I learned, which is exciting!”
Amanda: Well as seniors, many of us are heading on to graduate school. So I completely agree; the pursuit of knowledge and a love of learning is so important. You must preach that as a teacher, too, with your second graders.
Joanna: We’re doing a unit on space, and one of them asked me if I used to be in NASA and had gone to space, because I knew so much about space that they thought that I had actually been there myself! And I didn’t know how to say no, I just love learning about everything! So I do know lots about space just because I know lots about most things, because I think it’s really cool to know things!
Amanda: Oh, that’s so cute!
Transitioning back to you as the student, I wanted to talk about self-advocacy on a college campus. I find self-advocacy to be really crucial for a student with a disability not only in higher education but also transferring those skills to the professional world.
So what does self-advocacy mean to you? What does it look like?
Joanna: Self-advocacy was actually one of the first things that people at Susquehanna said to me. Talking to the Center for Disability Services and letting them know what I had, and would this school be a good fit for me, and one of the first things they said was “You’re really good at self-advocating!” It turned out to be a crucial skill.
Self advocating, in general, is knowing your worth and what you need and deserve and are owed by an institution, by other people. And specifically it is required so much for people with disabilities because it is so easy to fall into the trap of like, “Oh, I’m asking for so much…” or “Oh, I need this special thing…”, like “Maybe I should just try to make do; maybe I should just push a little harder.”
In reality, if you were just given this one small support, then you could do the thing that everyone else is doing. Am I asking for too much or is this just a small support that would allow me to function close to how everyone else does? And generally, it’s the latter. It’s you just need that support.
On a college campus, it can be really tough and stressful sometimes because whether you are met with pushback or not, you are just always expecting the pushback, because sometimes it comes. I have had a professor sit me down and say I don’t think you can handle this. I don’t think you should be in my class; I don’t think you can handle it; I think you will slow the class down. What you have asked is unreasonable of me and I wish to reject you from this class–which is not actually within her rights to do. And luckily I knew that, but it doesn’t make it not be incredibly painful to hear, and so that’s the biggest fight, is just the emotional. You’re constantly waiting to be told that what you are is not enough.
Amanda: Joanna has faced difficulties, but she still maintains such a positive attitude. I asked her how she overcame that emotional fight to now proudly say that she is enough.
Joanna: It was like 3 years into school before my emails saying that I couldn’t be in class, that they were not just long apologies like “Oh my God, I’m so sorry I’m not going to be there”, like before they were just “I am having a bad pain day. I will not be in class. Here’s the work that is due for today. Let me know what I need to do for next time.” Which is all that email needs to be!
So self-advocacy is that that personal strength that you have to build, of I know what I need, and I know that what I’m asking is fair, and that if someone is being rude to me about it, they are being rude and they are not correct about me.
Amanda: Joanna’s recommendation for students with disabilities? Have friends, family or faculty members you can trust, who you can “sanity-check” yourself with, people who will remind you that you’re not asking for too much–you’re only asking for what you.
Joanna: Because I know it’s self-advocacy, but you need to rely on more than just yourself, because you are already carrying the burden of your chronic pain or whatever your disability is. You don’t also need to carry the burden of reminding yourself that you’re also a person. Other people can and will help you with that.
The other big advice that I would have is being preemptive about it. So, ask for the services before you are in desperate need of them. So, if you know that whatever you have might mean that you need more absences than is typically being allowed, get that worked out within the first week of the semester. Be upfront about the services that you need. So, I might need a couple more absences; let’s work out in advance. How will I communicate that with you? How should I turn in work? How are you feeling about extensions? When do I need to reach out to you about that? All of those things. Work them out, and if you never need that support, if you never have more absences than you need, fine, then you don’t need them. Great, good job. But that way those supports are in place, if you need them.
Amanda: Joanna, you give such great advice. This is going to be a really great resource for current and future SU students.
Joanna: I’ve done this for four years now. I know what I did right and I know what I did wrong, or could have done better, you know. As a teacher, I love giving advice to other people. I love being able to say here was my experience, and if you can learn from that and grow from that, please do, so that I did not just make my mistakes in a vacuum to suffer from. Like, please take the knowledge and do better and succeed more.
Amanda: Joanna, I would be remiss not to talk about how active you are on campus, and by that I mean your involvement in the SU Dance Corps and Belly Dance Circle. What has your experience with those organizations been like? What is it like to participate in these and stay active as a student with disabilities?
Joanna: I knew when I came to college that I wanted to be, like, active physically. I’m not great about like motivating myself to go to the gym, but I used to play sports when I was younger, but I’m not allowed to play anymore because of my chronic pain, because I’m not allowed to do anything contact. So I picked up dancing for the first time in college and just fell in love with it. I just really love moving my body and feeling active, because I think so often when you have a disability, especially a chronic pain thing, there’s just this sense of betrayal between you and your body, where the thing that is supposed to support you and keep you alive just hurts all the time and it just feels like a fight against your body every day. And that’s so tough because you’re trapped with each other, you know. You can’t ever just step out of your body for a minute and get a little space. You always have to be together. And so Dance Corps and belly dance, belly dance especially because it is just so hugely body positive, really helped me with that. Because for the first time in a long time, my body felt strong and it felt beautiful, and I liked how I moved in it, and it was supporting me, and it could do the things that I wanted it to, and even though I couldn’t do every single move in the world, I was also a beginner in dance.
Because both of these organizations are student-run, everyone was incredibly understanding of what I could and could not do, if I couldn’t be there sometimes, if I needed the lights down a little bit. All of that stuff was just immediately accommodated, because these are other students who are also there because they love it, too.
Amanda: And I’m sure that’s rewarding, to be surrounded by supportive peers. I know in my experience with dance, your team quickly becomes like your family, and I’m sure it’s hard as a senior to leave that family behind.
Joanna talked with me about her journey through Dance Corps to the executive position she holds now.
Joanna: Now I’m actually the head captain for Belly Dance Circle and I’m choreographing for jazz. This is my second year choreographing for jazz and I’ve also choreographed the senior dance.
Amanda: That is incredible! I can tell you’re so proud of yourself; you don’t need me to tell you, but I can’t not acknowledge that you’ve made some amazing accomplishments.
So, what’s the secret? What’s the key to being successful, just like Joanna? Well, Joanna shares some wisdom from her current neurologist who has this five-pronged advice for sufferers of chronic pain: eat well, drink water, get sleep, stay active, and have a purpose. Joanna has believed in these goals through her college experience, and though it’s difficult, she’s found that working on these five areas has helped her more successfully manage her chronic pain.
Joanna: So I have done my darndest in college to pull those five things off. I think there’s a very small percentage of the student population that is succeeding on all five of those things, and it is certainly hard. But getting that active box checked-off really made a huge difference in how I felt. Because it also helped with the other ones, like I drink more water when I’m active, and I sleep better at night when I was active during the day.
Amanda: That is some really exceptional advice that I feel like students with other disabilities, not just chronic pain, could really benefit from. Thank you for sharing that with me.
Now, this is probably the most important question I’ll ask you: What can able-bodied people do to be more inclusive of and understanding of you?
Joanna: I’ve had a lot of people ask me sort of similar things. “How do I support my disabled friend?”, “Is this a bad question to ask?”, “Is this, can I not do this thing?” And the advice that I give the most often is that your good intentions are mostly just what matter. So, I know there’s a lot of sayings against good intentions, but for me the difference between a really rude question and just a slightly misguided question are just the intentions of the person asking it. So, if you are really trying to help and you’re really trying to say the right thing, and you’re just not quite sure, and you end up saying kind of a wrong thing, but you have really good intentions behind it–totally forgiven, you’re fine, 100%.
And with that, part of having good intentions is then the ability to be corrected. So I have several times said to people, even professors at college like, “Hey, this thing you said to me was actually kind of rude? I’m really sorry. I just wanted to let you know.” I’ve had a professor recommended medication for me that they read about and I was like this is really not your job. That was really sort of an overstep of professionalism here between us. It’s not your place to recommend a medication, this one actually…it isn’t even right for me, and you didn’t know that because you are not a doctor and you’re not my doctor. But this professor was amazing because they immediately stepped back and went, “I am so sorry, you are right. I will not do it again.” Yep, oh, awesome, fantastic! I’m so glad we had that learning moment. Let’s move on, like, let’s talk about something else. You know, no hard feelings against that whatsoever. It’s when someone with a disability corrects you and you go, “Well, I was trying to help!” That defensiveness means that you care about your comfort more than you care about supporting them.
Amanda: So be willing to listen, and be aware that even your most well-intentioned advice may not be helpful to someone with a disability. Are there any other ways able-bodied people can help individuals with disabilities?
Joanna: The other thing would just be doing things that are actionable. If you want to support a disabled person in your life, ask them what you can do, instead of just saying like “Oh, I’m so sorry.” Because that’s nice of you, but if you are close enough to a disabled person that it is not inappropriate to offer, they probably need help with an actual thing. Whether it’s like, “My hands are cramped up today. Can you help me wash my dishes?”, or like, “I’m feeling a little dizzy. Can you walk me to class?” They’re very small things, but it’s tough for us to ask, and so having those people in your life that you know care about you and you know are happy to do that really helps.
[“Upbeat Party” by Scott Holmes Music plays]
Joanna: Those are the two biggest things: help in a genuine, actionable way, and listen and care.
Amanda: Thank you so much for joining me, Joanna, to talk about your experiences not only as a student with disabilities on SU’s campus, but as a person who is deserving of respect and care and who has accomplished so much. Thank you for the advice you’ve shared with us today, which will be an incredible resource for any college student with disabilities or chronic conditions. Me/Us/U appreciates you.
Joanna: Yeah, happy to! I love talking about my experiences so I’m always happy to help and give opinions and advice.
Amanda: Well, it is incredibly valuable to us, so thank you for joining us on “Tuning in to Disability”.
[Music fades out]
[Upbeat, yet calm music begins to play: “Soft Inspiration” by Scott Holmes Music”]
Kiera: Hello this is Kiera, a member of ME/US/U, and one of your hosts for this episode. In this segment, I am interviewing my sister, Megan, about self-advocacy and her journey from high school to college as an individual with a disability.
[Music fades out]
Kiera: When I enter the Zoom session, I see that Megan is wearing, as usual, all the colors of the rainbow. Orange, green, and purple eyeshadow complete with glitter, a sheer blue t-shirt with white clouds, and a pastel rainbow cardigan. Her personality is as vibrant as her wardrobe and always has been. After settling into our Zoom, I asked her to introduce herself.
Megan: I’m Megan Bertrand. I am 20 years old. I do have CP, Cerebral Palsy. I currently go to a community college at Rockland Community College, and I’ve been there for almost three years now, hoping to graduate. I’m there just for a liberal arts general [degree], but I did take as many American Sign Language classes that I can as I’m trying to transfer to another school so I can be an American Sign Language teacher, interpreter mainly for young kids. But, yeah, that’s pretty much it.
Kiera: Meg uses Cerebral Palsy as the overarching disability. It most clearly causes weakness on the right side of her body, but she has others, dyslexia, ADHD, and an auditory processing disorder. I asked her if she felt people treated the two types of disabilities, the seen and the unseen, differently.
Megan: Oh yeah. I think people definitely separate them ’cause when people think of physical disability, think all they had an accident, or you know they’re born that way. But you know, like, I feel like people with learning disabilities, usually, people just assume, oh, they’re just not intelligent. And then like when you combine them, they’re just like, oh that’s it for them.
Kiera: This was especially apparent when she was in grade school where the teachers and the students didn’t understand the types of disabilities out there. When she was in middle school, she had to use a listening device for all her classes. A hearing impairment teacher named Ms. Mintz gave her a microphone to give to all her teachers and in every classroom, there was a speaker for her to sit next to and listen. Using this device and asking her teachers to use it was the beginning of her lesson in self-advocacy, something Megan was apprehensive of.
Megan: I had a friend. And we both were able to use it, so we both went to the teachers together and be like, oh this is for us, so we have to sit near the speaker, and it was fine. But as we all know, you don’t stay in classes with your friends all the time, and I had to do it by myself. And the equipment was kind of, umm, instead of a speaker, because there wasn’t more than one kid who needed to use it, it was just me, so, I had to give this teacher like the teacher for [every] period, which was like six or seven of them, um like a little like string thingy with a mic, they had like a mic which was like hanging. It was very obvious, very obvious! And then I had this like weird kit thingy that looked just like a hearing aid and then put it in. And like, you know every beginning of the year, Ms. Mintz told me oh, give this to your teacher. Tell them all this stuff and then put this thing in your ear in front of everybody and then sit down in class like nothing happened.
Kiera: At the time, Megan didn’t want anyone to know what disabilities she had. She told me it was because she was afraid of people’s reactions. Meg explained that at home her disabilities were something she was comfortable talking about. She accepted them there. But in school, she just wanted to fit in.
Megan: And there was like this one kid and he would ask me every day why I used it. It was really annoying. But every day, it was like a little secret thing and he was like oh, you know something like [is this] your spy gadget or something. It was kind of funny. It was nice, but I just literally refused to tell him why and he was like well, anyway, you know, like I like your little spy gadget and stuff like he was super nice and about it. But like every day he would ask about it. And then, after a while, I was like why am I so afraid to just tell him, like oh, I don’t process things as quickly as other people, so I have to use it. It’s not that hard. It’s not really that big of a deal, but to me then, it was a big deal.
Kiera: Spy gadget boy, as we’ve come to call him, was one of many students who asked her questions. But adults would take notice too. However, Megan has always had a great sense of humor about it.
Megan: I was just walking in the hallway, and this lady would be like “Are you limping?” And I was like “Uhm I guess so?” And she was like “You need to go to the nurse!” And I’m like Lady I’m fine and she’s like “Are you sure??” And it’s like it be how it be, this is how it is like—[Megan begins laughing.] I was like “I’m fine. Thank you!” That’s always the worst. When strangers are just like “Are you okay??”
Kiera: As Megan moved up in grade school, she learned how to speak about her disabilities openly and moved closer and closer to being her own advocate. A turning point we both remember was the dreaded IEP meeting. IEP stands for Individualized Education Program, and it is a document created by a team of people in the school to accommodate a student’s needs. Ever since Megan was in the public school system yearly meetings were held with all of her teachers and our parents to discuss this document and determine if these services were still something she needed. Our Mom described them as battlegrounds because she often had to argue with those who claimed Megan didn’t need accommodations anymore. However, Megan was never present at these meetings, but eventually, our mother began to ask her to come. She wanted Meg to learn the process of acquiring accommodations and hoped she could gain some experience from these meetings. Mom wanted Megan to learn how to fight for herself, but that was met with some pushback.
Kiera: I remember when you were in grade school and Mom asked you, hey you should come to your IEP meeting. You should learn about like how they go, and you should be there because you should be your own voice. And you were like “no, I’m not doing that.”
Megan: Again, with self-advocacy, I was not an easy person to convince to do [it], which really sucked. Uhm, now I know. So, I didn’t really go to my meetings until junior year of high school, so you know, I’ve always known about my disability. What it is. What comes with it. The extra things I have about it, and you know the struggles I had and why I had to do these alternative things. Like you know test-taking in a different room and having teachers that other students didn’t have, so it’s like [I was] definitely self-aware of it, that was mainly thanks to at home, and you know, I was really pushed for self-advocacy and you know towards the end I definitely learned more and was ready to self-advocate for myself for college. I always hated asking for help but asking for help is not a bad thing.
Kiera: Even though the meetings were really awkward, something Megan emphasized immensely during our conversation, they were helpful. Our Mom was always very communicative. Nothing was ever hidden, and she made sure my sister understood everything. Mom was an amazing advocate, and my sister often implies whenever we talk about her disability that our Mom was crucial in getting her to advocate for herself. Without her, Meg wouldn’t know how. Our mother pushed her until Megan found what she needed.
Kiera: Why do you think you were not ready to self-advocate, like what do you think you needed in order to finally be ready to actually, you know, fight for yourself and what you needed?
Megan: Uh, maturity. I was really stubborn. Uhm, I didn’t like, you know I accepted what I had at home, but you know, at school all I wanted to do was just fit in. I didn’t really want to say oh hi, my name is Megan. Will you be my friend? I have this. You know, like it was like, none of my younger friends really knew about it at all. Uh, which was fine, you know. But uh, you know that was my choice. But yeah, I think you know I don’t know why I feel like mom pushed me as much as she could. I was just really stubborn, and you know, it’s hard as a kid to find out you have that.
Kiera: What was the switch? Like when did you go, okay, I need to start advocating for myself, I need to start talking about my disability and what was the switch, like what pushed you?
Megan: Probably pressure from my mom telling me every day again, you really have to do this, you know blah blah blah and my alright you know I gotta stop being stubborn but also ’cause you know, I knew you know college would be very very different. I’m not gonna have my mom. You know, come to college with me and tell this person she needs this and I knew I was like it’s gonna be a shock and I have to prepare for it and I’m glad I did even though it was only like two years of high school. It’s still definitely helped a lot. It was still awkward. Still awkward, but it was worth it and I’m glad I did it. And it’s way better in Rockland Community College and not sure how that’s gonna work. But in other ones, every college is different, but I’m sure I can find somebody to help me out, and I’m so much better at reaching out to people and emailing people who I don’t even know because of college but, yeah, that’s how I knew I was like, OK, college is not just not going to come I’m gonna have to do it so.
Kiera: Meg always knew what she needed. She always knew her limitations, but more importantly, she knew how to soar. In this case, she knew she needed to learn how to be vocal about her disability and everything that came with it. But there was always this fear of embarrassment, of pity. The different reactions she would receive when people discovered she had a disability were always at the back of her mind.
Megan: I think nowadays whenever someone hears, oh I have a disability they’re like Oh my God, you know, be polite. You know, give them your pity like it’s just, you know, there’s a lot of you know, you get these looks and they’re just like, oh, I’m so sorry like it’s just like they learn oh she has these learning disabilities, I don’t know how far she’s gonna go. Yeah, they were like yeah we didn’t think you’d like, you know, conquer life itself. You’d just be at home, doing nothing ‘cause, you know, you have cerebral palsy, that was their initial thought. I don’t want that, but it’s inevitable.
Kiera: Megan’s attitude towards her disability and the perception of it has changed. She approaches it most often with humor but she also has pride and immense understanding. Throughout our discussion, she brought up the concept of acceptance frequently. She needed to accept her disability at home, in grade school, college, and the everyday world in order for her to learn how to advocate for herself. I asked her if she had any advice for others.
Megan: Don’t let them set up your future in their head for sure. Like you have to be really stern about it. Like really, really stern about it and you have to be really confident with it and especially like if anyone knows yourself, it’s you, you know you know what you need, they don’t.
Kiera: We often get the comment, “Oh you would never know she has [insert disability]”, which we’ve both come to see as annoying because Megan isn’t one to be secretive about her disabilities anymore and she certainly isn’t against talking about it. When I asked her what she wished others knew about disability she had this to say.
Megan: I guess know that like you know, it’s not always like, oh that’s it for them. I wish they knew, like you know I love, I love how me and you laugh about it. You know, Megan couldn’t remember to brush her hair, brush your teeth and do her pajamas. She couldn’t do three things at once and it’s I love laughing over it. Or like I said “that lady be like are you okay? You need to go to the nurse you’re limping” and I’m like no lady it is how it is, this is it, this is me, I’m sorry. I wish people would know like talking about it is not shameful. I love talking about it. I love laughing over it and I like now I like being open about it and I don’t want people to be afraid to ask about it. But I think a lot of people are like, Oh let me not mention it. It’s a touchy subject. It’s not. [Megan laughs] For me at least.
[“Soft Inspiration” by Scott Holmes Music plays]
Kiera: It feels so good to hear her talk about disability this way. It isn’t something we’ve always talked about, but as we both matured, we began to have these conversations, and Megan began to understand, accept, and overcome her insecurities. I find her inspiring, not because she is an individual surviving life with a disability, no. I find her inspiring because she learned to accept herself, color herself like a rainbow, and be her own advocate. I think that’s something we all want, and something I hope for.
Megan: Every time you hear disability there’s just pity and it’s just like oh that’s sad when I don’t think it should be. I don’t know if that could ever change, but it’s not a sad thing anymore, for me.
[Music fades out]
[Me/Us/U theme plays: “Night Owl” by Broke for Free]
Kiera: Me/Us/U is produced by students at Susquehanna University. We are advised by Dr. Heather Lang. This episode was written, recorded, and edited by Kiera Bertrand, Hannah Aud, and Amanda Gillette. Special thanks to our editorial intern Nicole Frank and to our interviewees Kelly Krotzer, Joanna Messineo, and Megan Bertrand. Our theme music is “Night Owl” by Broke for Free. Other music featured in this episode is “Devotion”, “Trapped in the Upside Down”, and “Hope is Not Lost” by Jim Hall, as well as “Upbeat Party” and “Soft Inspiration” by Scott Holmes Music. Sound effects from this episode were provided by Freemusicarchive.org. Background on disability legislation was provided by LD Online and Student Caffe. To hear the rest of Me/Us/U Season 2, check us out at me-us-u.org, or find us wherever you get your podcasts. Thanks for listening.
[Music fades out]
