Portland Community College | Portland, Oregon

Transcript edited by Hannah “Asher” Sham & Miranda Stalions

Intro Disclaimer

Kylo: You’re listening to Let’s Talk! Let’s Talk! is a digital space for students at PCC experiencing disabilities to share their perspectives, ideas, and worldviews in an inclusive and accessible environment. The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the opinions or positions of Portland Community College, PCC Foundation, or our community partners. We broadcast on our home website, pcc.edu/DCA, on Spotify, and on XRay, 91.1 FM and 107.1 FM, and KBOO Community Radio, 90.7 FM.

Episode Introduction

Amanda: Hello and welcome to today’s Let’s Talk: Autism episode. I am your host and producer, Amanda, and we’ll be talking about living with disabilities and how public perceptions impact us. I’m joined today by Indigo who shares their various experiences in people doubting both their physical and mental disabilities due to their age, functionality, and other factors. With this in mind, I would like you to listen to today’s episodes with your own perception of disabilities in mind and how they may influence your interactions.

Meeting the Guest

Amanda: Welcome to today’s episode of Let’s Talk: Autism. I’m the host and producer of this show, Amanda, and this is my wonderful guest, Indigo.

Indigo: Hello!

Amanda: So to start off with this interview, let’s start with names, pronouns, occupation/major, disabilities, and diagnosis dates.

Indigo: My name’s Indigo. I use they/them pronouns. I am a student advocate at Portland Community College. And, I haven’t been diagnosed with most of my disabilities. I have physical disabilities. I have some mental health diagnoses, and I also have autism, which is also undiagnosed.

Amanda: Thank you. And don’t worry, a lot of people haven’t been diagnosed with a lot of their mental health conditions because there’s a lot of diagnosis barriers, which will probably be discussed in today’s episode. But, just so you know, Inigo, it’s not uncommon and you don’t have to be ashamed or hesitant to identify as neurodivergent, even if you don’t have official diagnoses.

Indigo: Yeah.

Amanda: So, for me, like I said, my name’s Amanda, my pronouns are she/her. I am currently applying to vet school and kind of finishing up an animal science degree. I am a disability advocate at PCC as well. And I have autism and was diagnosed approximately three years ago, but I forget the exact date. I think it was like, I want to say April 2021, but I could be wrong.

Discussing Disabilities and Public Perception

Amanda: So Indigo, thank you again for joining me today, and today’s discussion’s gonna be about disabilities and people not believing our disabilities because we may or may not present in a way that people expect necessarily. So this’ll probably turn into a very interesting conversation, and I hope we’ll both get something great out of it.

Indigo: Yeah, me too. I’m excited.

Amanda: So, in your experience, do people generally believe you when you disclose your disabilities or not?

Indigo: Yes and no. People usually don’t believe the autism one. Because, I’m not like nonverbal and like people expect autism to show up in various ways. There’s a lot of stereotypes, basically based off of higher needs. They’re based off of assigned male at birth, like younger people. I feel like most of the studies, and people, believe my mental health diagnoses; my depression and PTSD and stuff, but they don’t really see it as a disability. They don’t see how it’s disabling and how it really is a disability just as valid as my other disabilities. Because it does keep me in bed, it does keep me from functioning and doing things That I see other able bodied- like when I see able bodied people functioning, I’m like, “Oh, I wish I could do all those things, like be productive and go to work and do all these things.” But, I can’t because of my disabilities, which I sometimes feel ashamed and sad about, but yeah, that’s your long winded answer.

Challenges of Invisible Disabilities

Amanda: Now that’s interesting, and you’re not the first person I’ve heard that from where if you have an invisible disability, people Seem to either be reluctant to believe you or are less likely to believe you. I know that, and it’s because of the physical disability, it’s like more people obviously see you’re having trouble getting around, or they see that You have trouble walking, or whatever. However your physical disability presents itself, people do see it, and I feel like people do give more space for it. I’m not saying people are always the best about it and can still be jerks about it, definitely. But I do definitely think it’s, you’re more likely to be disbelieved if you have a physical disability versus an invisible one, like autism. Like for me, for example, I know I’ve talked about this on the show before. When I first started discussing my autism or disclosing my autism with instructors, Especially the most common response I got was, “you don’t seem autistic.” And that’s because I’m low needs I’m verbal I can articulate a sentence and they don’t really work with me enough to see where I struggle mentally. Especially, if I have an issue with math. It’s usually when an instructor works with me enough with math. This especially happened with animal science course., I wanted to say it was like animal nutrition? Applied animal nutrition. Where I had to do some feed conversion. Feed conversion equations. And, the professor worked with me enough to really see, ” oh hey, she actually does have a disability,” “Oh hey, she actually does need help with this,” “She wasn’t just making up a disability from last term.” “She wasn’t just being lazy,” or “She just wasn’t willing to join my class.” “She actually does have a disability.” So, it’s only like when people kind of work with me enough and see it for themselves, they take it more seriously. Like, when they work with you more, do you think people “believe your autism”? If that makes sense?

Indigo: Like if they know me better and they’ve worked with me?

Amanda: Yeah. Essentially, if someone, like an instructor or an employer, works with you enough and they see for themselves where your autism presents. Do you think they start taking you more seriously?

Indigo: Not especially in my experience. Cause, I am a masker and I mask my autism constantly, for safety. With the visible versus invisible disabilities, I feel like people a lot of the time don’t believe my visible disabilities either, just because I’m young and because I’m a young person, I’m 21 years old, they don’t believe that I’m having problems with my legs or that, I really need a wheelchair. Like, they don’t believe that I can’t do the same things that [an] abled bodied young person can do because I’m young and like, “oh, you’re young, you should be healthy! You should be running around!”. And, I’ve actually had people directly say that to me. It’s really frustrating.

Navigating the Disability Benefits System

Indigo: Because, even with applying for disability; I’ve been applying for benefits, and I’ve been denied like four times. I’ve been applying for like three years. I finally got a hearing date and they said that even though I’m showing up in my wheelchair on the hearing date in the court, they could still deny me. Basically saying that I’m faking my disabilities and that I’m lying and that I’m not really disabled, which is like really fucked up.

Amanda: That really sucks, and I apologize for what I said before about your visible versus invisible disabilities, that was very ignorant of me. I didn’t realize that just because you’re young, people don’t believe your physical disability. That’s just really bizarre to me, cause you’re very clearly, especially if you’re in a wheelchair, it’s like, why would you make that up? Like what possible reason would you have to make it up, especially if you’re taking the effort to apply for benefits, show up for the hearing. Cause to me, if someone was gonna fake all that, they wouldn’t go through that much effort. At least that’s my perspective.

Indigo: Yeah, it’s really ridiculous. They are basically saying that I can work. I mean, I can work maybe 4 to 10 hours a week at a remote, really accommodating job. But, I can’t work a living wage. And they think that I’m able to work and that my disabilities basically don’t disable me enough. It’s really invalidating is what it is. I’ve heard a lot of stories about this hearing process being traumatizing. Going to court, someone arguing against you; basically, on two sides, arguing on one side that you are disabled and you can’t work and that you need benefits, and then someone arguing that you’re not disabled, to your face. And, I’m kind of scared about how that’s going to be because I feel like it will be traumatizing and I’m starting to prepare myself a little bit for that. So yeah.

Amanda: This is gonna sound really ignorant, but in these hearings, are you provided any kind of attorney or legal defense or, to help argue your case or not?

Indigo: Oh, yes, definitely. I have an attorney. I wouldn’t have been able to get this court date without an attorney. It’s really hard to go through the process of getting a court date. It takes years, usually, and a lot of appealing. It’s almost impossible to go through the process of getting a court date without an attorney. Because, first of all, I’m disabled, so it’s hard enough; the paperwork, all the legal things that I don’t understand, and then just like having someone represent me and like understanding all of that. So, it’s really hard for a lot of people to get a court date and a lot of people give up, because the process is so ableist.

Amanda: Is the attorney provided to you a specialist in ADA regulations or not?

Indigo: Like, are they disability friendly?

Amanda: Not just disability friendly, but are they aware of your laws and rights, essentially?

Indigo: I hope so. I’m not quite sure on that. I’ll have to look into that. I’m glad you brought that up. Because, the person I talked to on the phone seems really understanding of, like, the whole process and very knowledgeable and also very empathetic. Very kind to me about, like, “yes, we know you’re disabled. I know this process sucks.” “I know that it’s ridiculous that you have to prove all of this in order to just…” They’re very cool about the whole thing. But, yeah, have to ask them about that. Because, I would assume they are, with my experience that I’ve had with them so far.

Amanda: Yeah, and I’m assuming that they would be at least familiar with ADA and other disability compliance laws. The reason I ask that is because You just never know. Especially with the system. it’s just something to kind of prepare yourself for as well.

Indigo: Like, they could not be able to defend me properly without their knowledge of that? Is that what you’re saying?

Amanda: No, they wouldn’t be an attorney, in their position, if they wouldn’t know how to defend you. It’s more like if they have personal experience; specialize with disability regulation and law. They’ll be able to argue your case much better. Like whatever the opposition kind of tries to say, you’re not disabled or you don’t deserve these benefits or you don’t need these benefits and you can work. Whatever they come up with, your lawyer will be able to argue it a lot better if they do have that familiarity.

Indigo: Oh, gotcha, yeah.

Amanda: I should say attorney, not lawyer. Attorneys and lawyers are actually different.

Indigo: Yeah, yeah, this person’s an attorney, I believe. That is a good thing to be aware of.

Amanda: Well, the reason I asked that is because both of my parents are lawyers. And my mother is a certified CPA, or she was for a really long time. And my father did real estate law. When they divorced, they both had to get their own attorneys for divorce court, because neither of them were in family law. So, that’s what I mean. It’s like, you can be an attorney or a lawyer, but if you’re not specialized in one area of law versus the other, you’re going to have to get your own legal representation in that field, if that makes sense.

Indigo: Yeah, I get what you’re saying.

Amanda: So yeah, I’m sorry that you have to prepare for that, and it sounds like it’s going to be a very trying process. But, the reason I asked you questions about that is, I’m going to be honest, I’ve never thought about going to courts and arguing for my right to be recognized as disabled, and needing benefits for my disabilities. Because, I have the privilege of being able bodied and being able to work, but I definitely would never assume that someone else has the same abilities as mine. I also would like the audience to give respect and space for the process you’re going for as well, which is another reason I wanted to highlight that.

Indigo: Yeah, thank you. I think it’s something a lot of disabled people have to go through if they even feel capable enough to go through the process. Because, going through the process – it doesn’t just take a lot of energy. It’s like almost impossible as a disabled person. But thank you. Thank you for saying that.

Understanding Masking in Disabilities

Amanda: With that, I think we can get right into the masking question. So, do people treat you as an able bodied person without taking into consideration your needs and difficulties because they don’t believe your disabilities? What is that like?

Indigo: Yeah, I guess they expect more from me. They treat me able-bodied because I can do things just like everybody else. and they expect me to do things that able bodied people can do. like if we’re going somewhere and I’m not using my wheelchair; with parking, for example, they park far away and I always have to ask, “can we park closer?”. I feel like they’re not seeing my disabilities in that moment. It’s like, “Um, hello? Are you unaware of the fact that I can’t walk far distances? Like, can we park closer?”. Just little things like that, that I get microaggressions a lot from able bodied people who see me as able bodied a lot of the time. I feel like they don’t see me. They don’t see my disabilities. And, so they don’t see my difficulties, and it’s not just about not accommodating. I feel like the expectations should be different for me. Like, no, I can’t hang out with you today for four hours. Because, I have a really low battery and I start out with less spoons than everybody else and I don’t have the amount of spoons it takes to hang out with someone for four hours. Especially, if you’re able bodied and I’m masking around you because that takes even more spoons. They think I’m able bodied a lot of the time because I mask my autism and they don’t try to Socialize with me on my frequency. That’s another thing, they use sarcasm or it’s like they’re all in on a joke that I don’t understand; that’s what it feels like. Or, they were all given an instruction manual that I wasn’t given on socializing. And I have to fill in the gaps, and I’ve gotten really good at like trying to act as a neurotypical trying to socialize on their frequency. I’m always trying to meet them at their frequency instead of them trying to meet me at my frequency, if that makes sense.

Amanda: It does. I wanted to ask you a little more about masking. The reason I want to ask about masking with you is because, I don’t think a lot of the audience understands what we mean by masking, especially on the neurotypical level. So, when you say masking with your physical disabilities, what does that look like? Like, why would that cause people to think that you’re able bodied, or that you can function like an able bodied person, if I may ask?

Indigo: Oh, with my physical disabilities, not with my autism?

Amanda: The reason why is because masking, to me, can also apply to physical disabilities. Because, I think a lot of people may be in similar situations as you. Where they have to essentially push themselves physically a lot more than they should, because they’re expected to keep up. Kind of like, mentally, with autistic people, we’re expected to keep up mentally and socially somehow With neurotypical people. Even though we don’t have this invisible instruction manual.

Indigo: Yeah, it can look like not complaining about my chronic pain, or not complaining about how tired I am. Even though I’d like to say like, “Oh, I’m so tired right now. Like, I just want to sit down.” but, instead, I try to keep up and I try to do things like everyone else. Especially with standing while we’re talking. Sometimes I’m like, “Oh, can we actually sit down? Because like, I’ll be able to give a lot more mental energy and zest to the conversation if I’m sitting down.” Or if I’m standing up, I’ll just be like won’t be able to focus and I won’t be able to contribute as much to the conversation. Because, I’ll be focusing about how much pain I’m in or I’ll be feeling strained or tired. Yeah, it’s like little things like that. For example, I’m like in bed right now because I know I would be able to focus better and give better conversation because I’m laying down.

Amanda: Thank you. And if you need a break at any point during this podcast, just let me know. This conversation is meant to be relaxing and not stressful. Well, I’m hoping it’s not stressful to you at all, but that’s kind of the goal.

Indigo: Oh, thank you. I really appreciate that.

Amanda: It’s like I’m sitting down in a chair right now, so I’m not gonna judge you for laying down on your bed. That’s where you’re comfortable, that’s where you’re gonna focus the best, I get it.

Indigo: Yeah, thank you.

Amanda: So in terms of masking your autism, what does that look like?

Indigo: Well, I’ve given up on the eye contact thing. I used to try to make quote unquote normal eye contact. I hate that word “normal”. But, I’m trying to Keep my talking up to speed, like the pacing of my talking and how fast I’m talking, Just so it sounds like I’m not pausing too much. Cause in reality, I need a lot more processing time than most people, and I would be like talking, and pausing, and talking, and pausing between every word. Or, like taking more processing time, I guess is what I’m trying to say. Instead of speeding up my brain, so to speak. And then also my tone of voice; trying to control my inflections and my tone of voice. How I talk when I’m unmasking my autism, it’s kind of like this and it’s like a little goofy and I’m kind of a little more silly with it. I kind of sound like a kid and I don’t use this voice a lot because I don’t want to be perceived as a child. I get a lot of infantilizing, and it’s scary to be myself, if that makes sense.

Amanda: In terms of the masking of autism, I kind of get what you’re saying. Because, I’m actually the opposite of you in terms of my brain processing. I feel like what happens with my brain is it actually goes too fast, and I actually miss details and conversations and questions and I end up taking things out of context or responding in a bad way. Or, not a bad way, but maybe a weird way. So, maybe I mask a little bit, because I don’t think I mask a whole lot. Because, I wasn’t diagnosed with autism when I was a child, so I was just myself and I just got in trouble constantly. But, even when I was diagnosed, I just went for just disclosing straight away. But, it was when I had conversations, I feel like I had to grit my teeth and essentially force myself not to argue too much against professors who didn’t believe I was autistic, necessarily, or thought I was making stuff up. Or, not making stuff up, but essentially trying to game the system to essentially make classes easier for myself, I’ve definitely had that. And, in terms of the voice inflections; that’s an interesting point, cause, when I was a kid, I remember I was told a lot that I had like a snotty tone, or like a really indifferent tone. And, I wasn’t trying to be snotty, that’s just, this is just what I sound like. I just have a naturally flat tone and, I’ve heard this a lot, that autistic people have this a lot where we have like flatter tones, or we have atonal tones, and we can’t really do voice inflections that well, or we have to really try. My wife is definitely better at it than I am, and that kind of makes us come across badly sometimes in social situations. I just don’t have the patience to mask with situations like that. Because, “A”; I’m probably gonna get in trouble anyway, so what’s the point? And, “B”; if people have a problem with me because of my voice alone, they’re probably not worth my time interacting with anyways. If it makes you feel any better, Indigo, I think your voice sounds fine. I wouldn’t assume your age based on your voice. I’ve met people with really high pitched voices. I’ve met people with really low pitched voices. I could not tell your age by your voice. To me, it’s like you’re in university and college, so I at least assume you’re old enough to be there. I’m not sure if that helps, but yeah.

Indigo: Yeah, they don’t think I’m younger. They just treat me as a kid or they like baby me. there can be a lot of Scary, toxic things that happen with infantilization. Especially, with a lot of the traits I have with autism. Like I have this mechanic bird that I really like talking to. It’s like a toy bird that chirps to me and talks to me and I talk to the bird and people would start to see me as like a three year old or would like treat me as like someone who’s much younger than I am. Just kind of try to be a parent to me or like, I don’t know. It just feels really gross. Cause, I want to be able to do my things that seem childish that, in reality, are just things I do that don’t really have an age to them, in my opinion. I would like to be able to do those things without being seen as a child. I want my independence and, I mask a lot of those things too. Like a lot of my noises that I make; like my I make a lot of noises. I’m kind of like a little animal. Well now I just infantilized myself! I call myself a little animal! Anyways, you know what I’m getting at, I think.

Stimming and Social Challenges

Amanda: I think what you’re describing is what’s called, “stimming”. Or, I don’t know if you’d describe that as “stimming”? But, that’s kind of what it sounds like to me. To me, “stimming” can come in so many different forms that you talking to a mechanical bird would literally mean nothing to me. I’m not gonna lie, I would probably be creeped out by a mechanical bird, not because it’s anything against you. But, because when I was a kid in the mid 2000s; this might have been maybe a few years later, I don’t remember when this came out exactly. But, there was this plastic mounted fish that talked and sang as you walked by it. I hated that thing. It creeped the hell out of me, and I wanted to destroy the thing in my grandparents house, because it just freaked the hell out of me. I don’t know why. Like, for some reason, Things with eyes that follow you around the room just creep the hell out of me. Anyways, I guess what I’m saying is, I feel like people have odd reactions to stimming sometimes, and I feel like parents in particular try to regulate us as kids. My wife and I definitely had this as kids where, one thing I do when I’m standing still and I’m waiting for something to happen is I sway side to side. Like I have a hard time standing still. It’s not because I’m trying to be disruptive. I’m just trying to regulate my energy and make sure I’m not like wandering off or, like, bouncing up like a bottle rocket. Oh yeah, that’s another thing I would do. I would wander off or my brain would wander into space if I was not engaged in a conversation. My wife’s a lot better about retaining attention than I am in that regard. But, that’s what I mean. I feel like, if I stim in any of those situations, when teachers, especially, catch me, they feel like they have to pay more attention to me. Which I don’t mind if it’s relevant to what I’m doing. But, I don’t like it when I’m totally infanticized. Like, there was one teacher who misunderstood a question I had about an instruction on an assignment and she spent half an hour reading out the instructions of the assignment that had nothing to do with my question. Eventually, I just ended the call and was just like, “okay, I’m just gonna have to get a bad grade on this assignment. this is really fucking annoying.” So, I don’t stem in the same way as you and I definitely am not infanticized as much as you, it sounds like. But, I definitely have had that before and I find it very effing annoying.

Indigo: Yes, it is annoying. It’s almost like a form of pity too, is what it feels like. It feels like they feel bad for me that I’m autistic or something. like it’s a bad thing or something. When it’s not a bad thing, like, why do they think it’s like this curse? like a doom to the death, and I’m battling with some kitties, and the cats are scratching me in all the worst ways, and they feel bad for me that the cats are scratching me.

Amanda: I wouldn’t quite describe it like that. My theory about that is that people like to feel like they’re doing something good, if that makes sense. Like they want to feel like they’re doing their good deed for the day. I don’t think that’s a good excuse, and I definitely think that’s toxic. Because, First of all, you shouldn’t be bothering me just to make yourself feel better. And, second off, they’re kind of basing their assumptions on autism, assuming they’ve even heard of it, on really old stereotypes. I think you said “nonverbal” before; that’s definitely a stereotype, or just having trouble regulating emotions and having outbursts, that’s definitely a stereotype of autism. Or, they just watch too much Big Bang Theory and think we’re like Sheldon Cooper, which is definitely extremely inaccurate.

Indigo: Yeah, that makes me angry. I guess those people don’t matter anyways if they think I’m below them. Like, those people just don’t understand and are just gonna Be like that.

Amanda: Keep in mind, I could be wrong, and this definitely isn’t everyone. But, I think it’s really misguided. Like, people just really want to believe they’re helping us. Like I really do think a lot of times it is coming from a really good place. There’s this phrase that I really like to describe with advocacy especially, “The road to heck is paved with good intention.” Basically, it means you try to do good. This is a lot of inclusivity movements, in my opinion. People really try to do good from a privileged standpoint. But, because they’re from the privileged standpoint, they don’t understand the needs of the disabled people, or another marginalized group, is. So, they end up making the situation worse, or they end up causing new problems.

Indigo: Oh, yes. Yeah. That makes a lot of sense. I see that.

Amanda: Yeah, like a really common one I see is something I actually heard of in several classes I had. Where I would have people in the comments and discussion boards responding to my post saying I was so brave for coming out as autistic in class, and that their parents worked with autistic people, or they had a sibling that was autistic. And that always made me die inside because that told me that they think they know everything about autism. Usually when I would correct them in the comments section, they would not respond and they wouldn’t respond to me again in the discussion post. And it wouldn’t be like I’d go after them saying, “oh hey, you’re kind of spreading ignorance.”, or something like that. I would just be like, “hey, I appreciate your compliment, but what you’re saying about me is kind of a stereotype and this is more context into why I’m good at this particular subject.” like a lot of people assumed I was really good at math. I actually struggle with math, I actually have to put in quite a bit of effort. I can do math, but it takes me a while to learn it. But, whenever I would make corrections like that on the discussion board, they would never comment. They would never respond to me, they would never comment on a discussion board post I did again.

Indigo: That’s just plain rude.

Amanda: I mean, not necessarily. The thing of it is, because of the discussion board; my guess is that they were probably too embarrassed, or they really genuinely didn’t find my discussion post interesting after that.

Facing Embarrassment and Bias

Amanda: But, it’s just the embarrassment people do not like when they’re corrected. People do not like to be corrected, and they get really embarrassed by it. They just don’t want to continue the conversation with you afterwards. Because part of why I think people don’t believe our disabilities a lot of times, especially with autism and even your physical disabilities because you’re young, they don’t want to confront the fact that they have their own biases and prejudices. I know that we talk about that like in corporate training. But, when it’s applied to the real world, I feel like people are really terrible about either holding themselves accountable or holding each other accountable.

Indigo: Yeah, I think people just are afraid of looking at themselves in general, too. people don’t want to admit that they’re ableist. They don’t like seeing that about themselves when we all have our own internalized ableism.

Amanda: Well, “ableism” in my opinion, really comes from ignorance. Like, I made assumptions about your disabilities earlier in this podcast when I said that people probably believe your physical disabilities because they’re visible. But, you corrected me and said that’s not the case because you’re young.

Indigo: Yeah.

Capitalism and Ableism

Indigo: I think it also comes from capitalism.

Amanda: How so?

Indigo: Because capitalism breeds off of ableism. Or feeds off of ableism. Like, if we weren’t making money off of our bodies with the work that we do, people would be more accepting of disabilities in this world. Because, people generally devalue disabled people because we can’t work. Because, we can’t fit into capitalism in the ways that we’re expected to. You know what I mean?

Amanda: That makes sense, and extra resources have to be given to ask for care. For example, like with disability.

Indigo: Yeah, and that makes people hate on us more. The ableism comes from that too; it does come from hate also. I feel like it’s not all ignorance. Like, Some people are very aware of it. And, it’s about money. I feel like a lot of the time people think we’re relying off the government and we’re lazy and that we aren’t contributing enough. We’re just not seen as valuable. they also see us as not human.

Amanda: Yeah, and I wasn’t trying to say that all of it comes from ignorance, and there are definitely people out there, like you said, where it does come from hatred. The less than human part; I know a lot of people don’t mean to do that, but that definitely is how it makes us feel. I definitely do agree with you there.

Struggles for Accommodations in Education

Amanda: In work or school, have you ever had an authority figure deny you accommodations because they didn’t believe your disabilities? How does this impact your ability to work or function?

Indigo: Yeah, definitely. I’ve been denied accommodations so many times. With school, I had to work so hard just to get a note taker. it was hell, and they basically told me that I didn’t need a note taker, and that I just had to learn how to take better notes. And, I was like, “no, because of my disabilities it prevents me from taking my own notes,” and, they were like, “well, you could try this other program that could take your notes. You could get recordings of the meetings and then take the notes.” Like, they were trying to find ways around it and I was like, “no, just get me a note taker.” They said, “the disabilities you have the doctor’s letters for, we don’t see a need that you need a note taker because of these disabilities.” And, because I didn’t have certain disabilities, I was denied a note taker and I finally fought back. We finally got another doctor’s note that specifically said that I needed a note taker. And, the reply back times were so slow. It was like ridiculous. I shouldn’t have to go through all of this work just to get a note taker for my class.

Amanda: I’m sorry that happened to you. I’ve had similar experiences. My Disability I tried to get was a little more complicated. I tried to ask for some specific required courses to be remote rather than in person. because, I have anxiety that interferes with my ability to sleep sometimes and that would obviously make it dangerous for me to drive. Even when I presented diagnosis papers of my autism, Even when I presented a doctor’s note from my neurologist, I was still denied accommodations because it was considered unreasonable. Even when I offered to do alternative assignments, to work with a veterinarian, or some kind of animal producer in my local area to meet the course objectives. They just still said “no”. And, even when I asked could I just not come down for like every single class period, they were still like, “no”. Or, it was up to the instructor and some of the instructors point blank made it impossible for me to come to their class because they said that There would be a random class assignment during each week. And I asked, “okay, what day?”, And they’re like, “it’s random.” I’m like, “you expect me to, Essentially, twist myself inside out to come down early morning. And you can’t give enough effort to me to tell me what day a random class participation assignment will be on. I also had another instructor who was very passive aggressive who tried to not make me fail a lab, but definitely would have lost a lot of points on that lab. I was in the lecture and it was the day before the lab. she just said, “remember you have to have the horse skeleton memorized before lab.” And I was like, “you didn’t post this on Canvas or email.” And she said, “you should have been in class on Thursday last week.” Thankfully, I took Comparative Anatomy and Physiology like a term or two before, so I knew the skeletal parts of the horse anyways.

Indigo: That makes me angry. I feel like there shouldn’t be so many barriers to education. That’s just ridiculous. it should be accessible to all. Like, anyone who wants to get their degree or learn. Like, we should be able to, just like anybody else.

Amanda: I eventually, after a lot of fighting, I finally got a flexible attendance agreement between a couple of instructors and myself. And, it was one of those situations where it was a compromise, where no one was happy with the result. But, in the end of the day [sic], it did work for me. I actually do have my final production course where my professor has actually been very nice, reasonable, and accommodating, and he’s actually been really awesome. Here’s the caveat that a lot of professors like those ableists really miss; Because he’s so accommodating and welcoming to me and doesn’t hold my disability against me, I want to go down both days the class are in Corvallis. So, I do because I have such a good time in his class. And a lot of professors don’t really get that. It’s like, I am willing to put in the work and effort if I get the positive feedback. I don’t want to go to a class where I’m not welcome.

Indigo: Yeah, I feel like it’s almost done on purpose sometimes. Like, people don’t give accommodations because they want us to have barriers, and they don’t want us to rise up and have more privileges. because, if you think about it, education is a privilege. And, when you have your degree you kind of like, have another privilege and you’re able to access more things in the world, and you’re able to make more money, sometimes, and Things like that. So, it’s like keeping disabled people from graduating and getting their degrees and, quote unquote, “moving up in the world”. Like, there’s a reason for that. I feel like there’s multiple reasons why people don’t provide accommodations. But, I think that is one of them that few people realize.

Amanda: Yeah, my experience with these instructors is that, “hey, they’re the animal science department!” And that’s a program that’s very ableist by nature. I wouldn’t say it’s overtly sexist because it is actually predominantly female, believe it or not. But, because it’s kind of a traditional mindset where essentially students who want to become veterinarians, they have to want it enough to make themselves suffer essentially. I take the flex bus down twice a week for Corvallis, by the way, so that’s how I’m getting around the driving issue with this class. But, they’re like, you need to suffer and prove yourself you want this enough to go through all this effort when I only have to grade papers or whatever. it’s also like this whole “sucking up contest” too. Because, vet school is so competitive that students just want a recommendation letter from the veterinary teaching staff. So, that makes that extra ableist as well, because teachers can essentially be as picky as they want. Like I said, I’ve gotten really lucky with this, my last professor, but this animal production course, I get to work with sheep. It’s actually pretty fun. they’re actually really cute. Not very smart, but they’re cute.

Indigo: Aww! Are they fluffy?

Amanda: Depends on the breed. Merino sheep definitely are. But, if you have, like, Shetland sheep that has a little coarser roll. I mean they’re fluffy. I wouldn’t say they’re very soft.

Indigo: Do you get to pet them?

Amanda: Oh, yeah.

Indigo: Awwwww!

Amanda: They’re cute. But, yeah, so that’s unfortunate, though. And I brought this up in conversations before about education; where the more barriers you put up the less sustainable. Especially, when we’re in a period of, like now, where cost of living is so high. Students, in general, are being forced to work more and pay less attention to school. So, that is going to cause lower attendance rates. So, if you don’t make the classes remote, or at the very least more flexible; you’re gonna get a lot, a really major drop in attendance, and only the really rich are going to be able to attend university. And they’re probably gonna go into business or politics anyways, because that’s what their families did.

Indigo: Yeah.

Amanda: So it’s just not a sustainable model anyways, and that’s what a lot of people aren’t getting. And, COVID 19, it was a really hard time that everyone went through. But, a major issue it exposes the fact that there’s a huge shortage in the medical community. So, many people quit and got burnt out and we haven’t been able to fill the gap since.

Indigo: Yeah, more people are getting disabled from COVID too.

Amanda: So, we kind of already discussed this; Have there been times where you’ve been denied accommodations, despite having paperwork or having obvious physical or mental signs, that authority figures seem to ignore?

Indigo: Yeah. So, I have paperwork for a lot of things and I’ve still been denied. Like, I tried getting accommodations with TriMet Lift about the type of vehicle I get, because of my wheelchair and I don’t want to go in a van or in a car. Also, because of trauma. I don’t like riding in cars and vans. With strange men. I don’t know. Because they’re strangers and I’m getting in their car and it’s weird. Like, I have to do that still. they denied my request for that accommodation because they said “it was unreasonable”. And like, why is it unreasonable to just do the bus every time, instead of the van or the car. Like they could definitely work around that.

Amanda: Out of curiosity, when people do deny you accommodations like that, despite having paperwork, do they ever give you a legitimate reason or explanation? Maybe not legitimate, but do they ever give you, like, any kind of sufficient explanation about why it’s unreasonable?

Indigo: Basically, saying that I don’t need it. Like, with the note taker thing, it was like, “Oh, you could learn how to take your own notes!”. Or, like with the TriMet lifting, it’s like, they’re basically assuming that I can work around it. That I need to accommodate them.

Amanda: Yeah. do they bring up your medical conditions, or your disabilities, or do they even mention that in the denial statement, or denial letter?

Indigo: They don’t.

Amanda: Yeah, so, with the accommodation denial I got, they basically just said it wasn’t reasonable, and that remote attendance just wasn’t reasonable. But, because I had so much paperwork, they did come up with a flexible attendance agreement. Which, I don’t know how often they’ve done before. But, It is a complicated process. I will give credit there. Because, they did basically have to make up a contract between me and the instructor about how many labs I would attend or I’m allowed to miss, due to my disability. Or how many classes I have to attend or how many classes I can miss, due to my disability. but, the instructors are still basically the gods of their realm in the classroom, so they could still Deny or accept me based on their own perception of my disability, if that makes sense.

Indigo: Yeah, why are they getting to say how disabling my disability is? How does it feel to you when you hear that? Like, what’s your perception of that?

Amanda: They’re lazy, basically, and they just don’t want to make exceptions for me. they just don’t want to make up new policies for me, basically. to me, it really is just sheer laziness, and I think it is slightly about money. Don’t get me wrong, but I really do genuinely think it’s an administration that just doesn’t want to change.

Indigo: Oh, interesting. I feel like for me, it’s like sometimes the people in power; it’s almost like they get something out of denying me. I don’t know if that’s me just assuming the worst in people. But, I do think sometimes it’s because they’re power hungry and they’re kind of getting something out of it in that way

Amanda: When I get into fights with professors about this, that definitely comes up. I don’t care what they say. It definitely comes up from I’m just saying that from the DSA perspective, it’s an administration thing, whereas professors, it definitely is a power thing.

Indigo: Yeah, it’s like because they’re able bodied they get to have this power over me and They get a kick out of getting the power over me. Not with like every situation. But, definitely the DRC. Like they seem very; I don’t want to go so far as to say abusive. Well, actually the person I met with at the DRC; she was exhibiting abusive behavior, the way she was talking to me and talking down to me. I’ve had mental health crises after having appointments with these DRC counselors, just because the way they talk to me and like, they’re supposed to be the ones accommodating me, you know? Like they’re supposed to be the ones trying to help me and they’re just completely Being ableist to my face and I’ve had really bad experiences with that. I’m trying to think of some other examples. I know there’s been a lot.

Workplace Challenges and Ableism

Indigo: I’ve never gotten good accommodations with work. I’ve always had to leave jobs or been fired because of my disabilities. because, they don’t accommodate, especially my mental health ones, cause they don’t really see those. They basically say if I can’t work the job efficiently, and I can’t do it because of my disabilities; then they don’t value me, and like, I shouldn’t be working here. And, they don’t like try to accommodate at all. I had one as a kid counselor for a summer camp; which is like a really physically taxing job, working with kids. And I tried really hard to be good at that job. I was good at that job, like I work really well with kids, but the thing was, I didn’t have the energy to keep up all day and they wanted me to be like really peppy and like happy go lucky. they would correct me all day long about how I wasn’t being energetic enough for like things like that when I have chronic fatigue and I have body issues and like come on! Why can’t you accommodate me in this small way? they basically told me they were gonna lower my pay if I couldn’t, make changes. but yeah, that’s my sense about that.

Amanda: Yeah. And that actually kind of reminds me a little bit; another note about the professors thing. In the professors view, they genuinely think they’re doing me a favor by forcing me to go down to Corvallis. Because, To them, I’m participating with the class and they’re treating me like any other student. I think with your employers; I am not defending either the instructors or your employer for doing this, to your employers, they’re going to make it more enjoyable to the kids, and they’re making it more enjoyable for you. I’m not trying to play devil’s advocate at all, believe me. Because, I don’t think either of those perceptions are good. But, it’s this whole ableist perception where they think they’re doing us a favor by trying to force us to act normal, quote unquote. And that’s like, the biggest toxic issue neurotypical people have, and able bodied have, with society. If that makes sense? Just pretending our disabilities don’t exist, and treating us as normal, quote unquote, or trying to force us to be normal, quote unquote.

Indigo: Yeah, that’s so true. Like, I think they think that if I act, quote unquote, “normal”. Because, I don’t like that word. But, like…

Amanda: I also just don’t think there’s such thing as “normal”.

Indigo: Yeah, I like the, quote unquote, “normal” way of saying it. I think why they like doing that, or why they think that’s good to do that. Like you said, it’s like, they think I’m gonna be healthier. With the exercise thing, people think I should exercise; and I tell them that I can’t because of my disabilities, and they’re like, “well, you should be walking this much every day”, and, “come on, let’s take a walk together!”. Like, “it’ll be so good for you!”. Like, kind of trying to force me to be like “able bodied”. because, they think it’s good for me, and, like, they don’t understand that My way of living life is good for me too, you know? I enjoy a lot out of life. I’m happy most days now. Even though I struggle with my mental health, I’m doing a little bit better.

Amanda: And to me, about the professors who Are so convinced that I have to be down in Corvallis to get everything I can out of the class, especially like peer interaction. Let’s all be honest, we’re paying way too much money for this class. I’m not going to have any interest in interacting with any of these people after this class. Let’s not pretend this is a bad family reunion.

Indigo: Bad family reunion.

Amanda: Like, there’s no reason to force interactions, just let me get my work done and get my course requirements done so I can get my degree. Like, we don’t want anything else beyond that with each other.

Indigo: Yeah, for real.

Advocating for Ourselves

Amanda: So, do you ever have any advocates help you with filing for disability, or other such accommodations? Or, do people ever help advocate for you if you’re ever denied? Or, if you’re infanticized, does someone else say, “hey, let’s not do that?”.

Indigo: I kind of advocate for myself for the most part. Which can be really hard. I’m just like trying to gain my independence back. I do have people come with me to like doctor’s appointments and things like that. Like friends and stuff for support, like mental health support. but I’ve gotten pretty good at advocating for myself. sometimes I do wish I had at least a social worker, like someone on my care team, who could help me manage everything with my disabilities and like getting things done. Because it can be kind of exhausting doing all of this by myself, honestly.

Amanda: The reason I ask is; An interesting topic has come up with the core sciences group I run with Phyllis recently. The fact that faculty usually don’t advocate for students that they know are facing ableism and racism and other issues in class. They don’t know how to, hold each other accountable. It’s like students are told all the time to hold each other accountable when we’re either racist, ableist, or sexist, or whatever “ism”. But, faculty don’t do that for each other. And, I definitely discovered that too, when I considered filing a complaint against that one professor who almost screwed me out of a lab. My advisor, point blank, told me she was not paid enough to give me advice on that. I appreciate the honesty, actually, I really do. Because, she didn’t try to give me the corporate answer that’s like 10 minutes long of absolutely nothing. She just said, “I can’t give you this advice. I really can’t. I’m just not paid enough to go up against this woman.”

Indigo: Whoa…

Amanda: People might criticize my advisor for that. But, to be honest with you, I appreciated the advice. Because, that just told me how on my own I was with this. I’m currently a research assistant under my lead researcher, who’s actually a neurodivergent woman herself. And I did talk to her about the situation and she, point blank, told me that I could file a complaint against this woman. But, it would professionally screw me in that university. So, she just advised that I wait on it and see. Especially, if I go to vet school, potentially; that if I do file this complaint, I’m going to have a lot of bad blood with this instructor in vet school. And that’s just not something professionally, that would be a good idea, unfortunately,

Indigo: Yeah, that makes sense. how the bad blood would be bad for your professional life.

Amanda: The reason I bring that example up is because; it’s like you said, “we’re primarily on our own in terms of advocating for ourselves”. And I want the audience, especially faculty, to think about the fact that; if they have students telling them, a coworker of theirs is being a bad person to them. Instead of thinking to them, saying, “Oh, this teacher is such a great person. I work with them. I learned so much from them”, and stuff like that. Think about what the student is saying, and think about how they’re actually treating the students. Because how they’re acting towards you is a completely different face than what they’re giving the students.

Indigo: Yeah.

Amanda: I know that sounds kind of critical. But, it’s just… Abusive people are really like this; where they’re very good at presenting one face to you and are completely different to someone else. Because, that kind of makes you doubt whoever reports them.

Indigo: I hate that. that freaks me out. It’s almost like – they’re like a monster. Where they’re like, ” Oh, I’m gonna lure you in with this candy”, and then, rah! Chomp! They eat you up.

Amanda: Yeah, and maybe that’s a little too critical to say. But, I guess what I’m trying to say is; students, if they hear a faculty member advocate them, especially if it’s another teacher, that really makes them feel safe and that really makes them belong. At least that’s happened to me; I definitely feel like I belong there. And even if it wasn’t the advice I wanted from the lead researcher, it did give me assurance that I could trust her. That she was real with me.

Indigo: Yeah.

Closing Thoughts on Disability

Amanda: The last question I have was closing statements; what do you want the audience to think about when thinking about other people’s disabilities?

Indigo: I want people to think about how strong we are. I want people to see our strengths and to acknowledge the fact that we’ve been through a lot and how resilient we are and how strong we are is really important. I feel like we’re the most empathetic, loving, caring people, and we really can understand how to survive life. In like our own unique ways. we’ve built that skill. we’re very strong and we are very skilled in how to go through the hoops and just be able to survive all of the trials that life brings to us. To just maybe take a step back from judgment sometimes, or pity, or assumptions and to just really not be afraid to ask certain questions. Just see us as people and see us as your equals and your peers. Because, we’re all around and we are resilient and our disabilities don’t make us incapable. They don’t make us incapable of being loving human beings and being compassionate human beings; which is actually a skill that a lot of people lack. And it doesn’t make us incapable of being who we are and being what we need to be. We’re not incapable people, I guess is what I’m trying to say. Autonomy is very important for me, as a disabled person. And making sure that when you treat people, who have disabilities, making sure you help us keep our autonomy. And just because we’re maybe dependent on certain people for things, like caregivers, or such doesn’t mean we’re less strong. We’re still independent in the most important way, which is our thoughts and our actions. Sometimes dependence on things like governmental aid, and other like caregivers, gives us more independence. So, there’s a lot of different ways to think about it.

Amanda: Thank you. What I want people to take away from this conversation is, not only believe people when they disclose their disabilities to you. But, to also remember what not believing them does to them. Just how invalidating that is and the fact that we have to fight for recognition every time someone doesn’t believe us. also remember that just because we don’t present disabilities in a way you’re expecting, that doesn’t mean we’re lying. It means that We aren’t Sheldon Cooper. It means that we’re not anything else you’re expecting that disabilities to look like. So, that’s about what I would like to say to the audience. Indigo, do you have anything else you would like to say to the audience before we go?

Indigo: thank you for listening and remember to pet and talk to your mechanical birds and to give them lots of love!

Amanda: Thank you, and thank you everyone for listening. I hope you’ll join me for the next episode.

Episode Outro

Amanda: Thank you for listening to today’s episode. I hope our conversation challenged you to think about your perception of disabilities and how your reactions impact others. In particular, I want to highlight the invalidation disabled people experience when denied accommodations in the workplace, university, and government benefits. Not only does this prevent us from operating on a societal level, this further isolates us because our disabilities are ignored. The way to include the disabled population is to listen and converse with us about our conditions, so we can strategize on how to meet our specific accommodation needs. Denying us out of laziness or misguided beliefs only exacerbates the problem and I hope the audience takes this consideration to heart. Thank you for listening and I hope you join me for the next episode.

Outro Disclaimer

Naia: Thank you for listening to Let’s Talk!–Portland Community College’s broadcast about disability culture. Find more information and resources concerning this episode and others at pcc.edu/dca. This episode was produced by the Let’s Talk! Podcast Collective as a collaborative effort between students, the Accessible Education and Disability Resources Department, and the PCC Multimedia Department. We air new episodes on our home website, our Spotify channel, X-Ray 91.1 FM and 107.1 FM, and KBOO Radio 90.7 FM.