Let’s Talk! Autism & Disability on a Spectrum

Intro:

Naia: Thank you for 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 views or positions of Portland Community College, PCC Foundation, or X Ray FM. We broadcast biweekly on our home website, pcc.edu/dca, on Spotify, and XRay.FM, 91. 1 FM, 107. 1 FM, and online.

Amanda: Welcome to today's episode of Let's Talk: Autism. I'm your host and producer, Amanda Antel. And today we will be exploring the topic of believing disabilities. More specifically, my guest Mackenzie and I will be discussing our varied experiences in disclosing our disabilities and people either not believing them or having difficulty doing so. As you listen to both our stories, I want you to keep in mind that disability is a spectrum and that symptoms will manifest and present differently between people. With that, please sit back and enjoy the episode. So, thank you, Mackenzie, for joining me today for this episode of Let's Talk: Autism. Today, I guess, let's talk neurodivergence and let's talk disabilities today, because we're just talking about people not believing our disabilities, whatever they may be.

Episode Start:

Amanda: Yeah. So, let's just start with, oh, sorry, go ahead, Mackenzie.

Mackenzie: It's okay. I was just going to introduce myself, which I figured was where you were going. So -- 

Amanda: Oh, yeah. Introductions. Like, go ahead and just say your name, your pronouns, occupation slash major, and disabilities and diagnosis dates. 

Mackenzie: Okay, so my name is Mackenzie. I also go by Mack, don't really care, but my pronouns are they, them. Um, right now for context, I'm 29, as I kind of just go through my story really briefly. I'm a student still. I'm a psychology major and ASL minor at a university. I just started at a university after being at Portland Community College for a few years. So my diagnosis journey is long, so I'll try to keep it short, but I was first diagnosed as hard of hearing when I was in first or second grade. My mental health diagnosis journey kind of started around age 15. At 19, I was diagnosed with ADHD. When I was 20, I started my natural health journey. 23, I was getting starting to get diagnosed with certain chronic conditions. And then those kind of unfolded over the last seven years. And then now at 29, I'm actually looking into doing some cognitive assessment, neuropsychological testing, and learning disability assessment to kind of get a better picture of what my needs are, sort of where my processing capacities are, so I can work with my brain better and still be able to finish school.

Amanda: Thank you, Mackenzie. And I don't know, to me, it's awesome that you discovered a new passion and a new path, and that's what life is all about, you know, I don't know, this might be cliche, whenever life closes a door. Like, whenever, I don't know, whenever I guess we go to a crossroads or we see a new door open, we just go for it, you know?

Mackenzie: Yeah, that's how I've been feeling a lot about the things in my life right now. They might not be on my original path, but like, I believe that things kind of come up as they come up, and you can't really always plan out your life, especially when you do live with disabilities, just, you know. It's really hard, nothing is the same from day to day, from month to month, from year to year. So you just kind of have to learn to like, roll with the punches, essentially. 

Amanda: Yeah. So my name is Amanda. I use she/her pronouns. I'm currently finishing up an animal science major at Oregon State University with a pre vet option. I will be applying to vet school soon. My ultimate career goal is to be a veterinarian. I'm heavily considering emergency room vets, because of all the really cool surgeries. I have anxiety and I forget exactly when I was diagnosed, I think it was like in the last year though, and I was diagnosed with autism when I was 31, and I had a fairly long diagnosis journey as well, but suffice to say, during the 90s, autism was just not looked for in young girls, or people of race as girls. So unless if it was like super severe and even then it was considered extremely rare. So that kind of has resulted me and a bunch of other people being diagnosed later in life and just kind of unpacking a bunch of trauma and understanding what happened to us. 

Mackenzie: Indeed. I did forget to mention that a couple years ago was when I kind of started on my autism self diagnosis journey. I have a lot of thoughts around getting a formal diagnosis, a lot of, it's hard to explain, but. Both my, like, main doctor, the past two therapists I've worked with, and my other doctor validate and affirm my self diagnosis, so I'm really grateful to have that. A lot of people don't even have that, so we'll definitely talk about that later when it comes to believing disabilities, but I did want to mention that too, is it's not a formal diagnosis, but definitely self identify.

Amanda: Well, self identification versus formal diagnosis, I think, is kind of, a really big contentious issue between believing and not believing us anyways, especially within visible conditions like autism, ADHD, and hard of hearing, and even full on Deafness. Correct me if I'm wrong. 

Mackenzie: Yeah, definitely. I mean, you can't see it. And even like when you can physically see my hearing aids, I think one of the most common things I get is I would have never thought those were hearing aids. I thought it was just a piercing. And I was like, I have facial piercings. Like I have all these other piercings that are visible. Why would I choose this strange, like clear translucent tube going from one hole to another as a piercing? Like, it just doesn't make any sense, but people just don't think about it. They just, their first assumption is that everybody is able bodied. Everybody has the full capacities that they have. And so their first thought is not disability. It's just, I don't know. It's 

Amanda: That's so weird to me because it's like, to me, even the times I have seen hearing aids, either on you or other people, I know what it is. It's like, I don't have to ask, or, I don't even ask anyways, but it's like, oh, okay, it's a hearing aid, whatever. Yeah, I did. What? Why the heck would that be a piercing? So this act, what we talked about actually goes into number two. In your experience, do people generally believe you when you disclose your disabilities?

Mackenzie: I feel like that's a really loaded, hard question to answer because to be honest, I have no idea most of the time. I've been on this journey for the past, like three, four years to just really understand my disabilities, how to show up in the world that doesn't support me in the way that I want things to be right. So when I'm alone, I'm very accepting, understanding. I. Believe my experiences. I validate myself. I do a lot of healing around, but when I'm in the context of other people, especially when there's a power imbalance, whether it be a teacher, an advisor, interview, like a boss, whatever it may be, I immediately retreat into myself and I start not believing myself because of just this chronic story I've been told my whole life about, you know, hiding disabilities because people don't want to know about that, right? They want you to know that you're just the typical as everybody else. And also just like rejection sensitive dysphoria. Just that, like you try to do something big and scary, like Disclosure disability or ask for your needs and then people reject you. And so it just kind of compounds this trauma with even speaking up about it. And so I immediately in those experiences, I start to not believe myself because of all these stories that I have from. prior experiences in my life and I project that onto other people so I believe that they don't believe me because of my own interpretation of the situation. So it's really sticky. I think it really depends on whoever I'm talking to and like how I'm communicating it as well but I can tell like I really have to prepare myself. It's like a multi day process kind of like getting really in like journaling it all out, trying to figure it out, what I want to say, like doing yoga. Sure. My nervous system is really calm, shutting out all things that I have to do in my life just to focus on this one conversation. And then still, it feels like the fight or flight experience is evoked in these moments and I completely disassociate. And so I've actually have had advocates with me that times when I've tried to disclose my disabilities and talk about it, and it helps, especially because afterwards I can go to them and be like, what's your interpretation of the situation? Cause I don't know where I went, but I was gone and they're like, no, you did amazing. And I was like, great, because like, I basically set up this persona of myself that believe what I have to say. And then I make that persona come out in those moments. But. It's really hard when you're chronically invalidated your whole life to trust your instincts and trust your interpretations of situations, especially when it comes to neurodivergence and communication differences with people, especially with hearing. I've been told so many times throughout my life that I misheard the situation when I was like, I don't believe that, but I don't know it in the moment. So it's a, it's a loaded question for sure, but I'd say yes and no, but it's also hard when my own perceptions kind of clog up that, you know, perception.

Amanda: Yeah. And I apologize. That is a pretty loaded question. That's a very general question too. I guess I was looking for like the overall trend you saw you've experienced with people with your disabilities. I guess that's kind of what I was going for that question. So like with me, for example, I would say that people generally believe me when I say I have autism when I disclose to them, especially instructors, but I swear nine times out of ten, I know I've mentioned this to you before, where they're like, you really you don't seem autistic. They're just surprised I have autism because that just kind of messes with Their idea of what autism looks like or what they were told it looks like. They just look up different media sources or I don't know, big bang theory, like young Sheldon and different websites that can't be named. So trust me, I get it. Why I get that part when you texted me about their concerns. I think as long as your own disability kind of messes with someone's idea of a disability. Then they have trouble believing you. That's been my experience like with my autism, for example, people just kind of assume based either nonverbal or just something like Sheldon Cooper from Big Bang Theory, because I feel like unfortunately, that is the most common example I hear, even though he's not even officially stated to be autistic, or maybe Abed from Community, which is a better representation, in my opinion, because he at least is stated to be autistic. But it's still like it messes with that perception that people have about autism, especially with like, I'm okay with social cues, but I miss a lot of it if I'm not looking for trends on people's faces or pauses and voices, you know? Would you say like with your autism or your ADHD or even your hard of hearing, like it just kind of messes with people's perception of those conditions, you think?

Mackenzie: I don't know. It is hard because there's a big difference in discussion between like discussing one disability and then the interaction of like many, many, many different disabilities. You know what I mean? When you have like one disability and you can stand up, speak about it or whatever. People are generally believe you but when you have all these intersecting disabilities and you're just like my needs vary from different days and they show up differently every day so it's really hard to know what's impacting me the most at the time until it happens and I think ADHD has really masked a lot of the autism experiences that I've had over my life, because they're just very opposites, but yet the same in some ways. And then with hard of hearing, I've actually been thinking about this a lot, about when my mask really started to develop. I just wanted to remember it being mostly when I was a young child, just being told that my uniqueness and my kind of weirdness was cute and creative, but like not accessible. But then when I was diagnosed as hard of hearing and like started understanding my experience as the hard of hearing person, I think that's when my mask really started to develop because it became this thing where it's like you're not allowed to not be hearing, you're not allowed to not, like, it's rude if you don't hear it's. You know, it's rude if you have to ask somebody to repeat yourself. If people are calling your name and you don't respond, that in particular, I think impacts my communication the most because I don't think people understand how much energy it takes for me to be in a hearing situation and be able to hear. And, I, like, can't go to restaurants and bars anymore because I got hit with post COVID syndrome last year. It really messed with my sensory processing abilities, especially when it came to hearing. So I was lucky to be in a situation where I was kind of immersed in sign language. And so I didn't really have to wear my hearing aids anymore, but it was really painful to wear my hearing aids caused really severe headaches. Nowadays I don't even really wear them for more than three, four hours a day because it causes so much sensory overwhelm for me and when I go into situations where I have to communicate in that way, all of my energy goes to trying to hear and trying to like filter out all the background information and the static. There's just this like air that you always experience with hearing aids, this sort of background noise. And so that's really increased how I am perceiving situations and communication. And so it's been kind of a hard thing. To realize, but when I'm also processing so much information, I have a hard time understanding what my experience is in the moment. So it's hard for me to like, communicate that to people. I just oftentimes just have to run away and leave and then be able to process whatever was happening. So, yeah. A lot of my processing happens outside the moment. And so it's really hard for me to be in the moment talking with people. I think that's where a lot of not believing can come in It's cause I'm just like, I don't know how to explain this to you right now. I can't really process the situation right now, but like, I, once I step out of the situation, I'm like, Oh, I can explain this so much better, but that moment has passed. So it's really weird how that process 

Amanda: Happens. I wouldn't say it's weird. I just think it's just your brain taking in situations and input and just kind of processing it. I don't think that's anything to be ashamed of. I'm actually really, I'm really grateful and guilty at the same time right now talking to you like this because Now that I know how much energy it's taking for you to just hear me and the fact that I can't, I don't know how to sign, I feel very bad the fact that you have to go through that with me. So thank you for just doing this interview in a way that I can communicate with you. So thank you for accommodating me. 

Mackenzie: Sure. And I do want to say that instances like this where I am at home, there's no background information. I'm in my room. I have all my sensory needs, but I have my hearing aids directly connected to my iPad. Those all things make communication a lot better. Like I realized I had this. autism like neurodivergent support group last fall and you know we had a Online format where we met like this and it was fine. You know, I've got captions I can control the volume of things and it's nice for me And then I go into in person events with them and i'm like I didn't know you all were so soft spoken spoken, but it is so impossible to hear all of you. And so then in these types of instances, this is accessible for me, but I will be pretty exhausted afterwards and then like have to rest. And I think that's a thing that needs to be said for a lot of things that I require so much rest after having to use my brain. And that's a really hard thing to be able to explain to people and have them believe. It was just like, I used up all my brain spoons for the day. I literally cannot write this paper because I just don't have any cognitive capacity left. And that's a hard thing to explain to people. I feel like that's when people mostly don't believe, especially vague things like brain fog, which can be really debilitating sometimes and really mild sometimes. So yeah. 

Amanda: Yeah. Well, thanks for letting me know that. But if it does come too much during this interview, just let me know. We can just end the interview early because I don't want you to be overwhelmed because you're first and foremost my friend.

Break #1:

Miri: You're listening to Let's Talk, Portland Community College's disability awareness podcast. 

Section 2:

Amanda: But going back to what you said, I feel like there's actually an interesting commonality between autism and hard of hearing, at least in my experience. And that's the fact that people really have a hard time conceptualizing what we're talking about when we mentioned things like executive functioning and brain fog and sensory input, like, I know that these disabilities are really different, but at least the way they intersect kind of goes into that. And at least with me, I know a lot of people do kind of start doubting me there, especially professors who don't know me and that can really have a traditionalist and elitist mindset on how students are supposed to participate in their class. Like, they believe because I'm cognitive enough to have a conversation with them, I'm cognitive enough to argue my case with them and advocate for myself, that they just don't believe that I am debilitated enough by my anxiety to where I would have trouble driving, for example. Like, they just refuse to believe that, and I feel like there's this stubbornness there that they refuse to acknowledge, and it really isn't until they get a disability themselves, like hard of hearing or hearing loss, and they have to use hearing aids that they really get what I'm talking about. In fact, there's been like several cases where I have said, you asking me to participate in a group assignment where that's remotely or online is like me asking you to turn off your hearing aids and lip read me. It's that much of a cognitive block. It takes that much. It's going to take that much energy, and it's not likely to be very accurate. And it's that same attitude I would have towards you. Like, I'm making you daredevil, essentially, is what I tell them. And it's like a switch, and their brain goes off, and they finally realize, hey, I'm being a d k. I mean, see what I mean? It's hard for me to accept it. They're being a jerk. They realize they're being a jerk. 

Mackenzie: There's also a lot of overlap with, like, audio processing disorder and head and ear divergence. So, like, even if you can go get a hearing test, which is, it's in my opinion, like, you're locked in a soundproof booth hearing, like, beeps and all these things. Like, nowhere does it mimic real life communication and situations. Anyway, that's my little bit about that. But like, you can not have any hearing loss, documented hearing loss from a hearing test, but still really struggle with processing audio, right? It's a brain process. And I have to explain that a lot to people and hearing isn't what you believe it is to be. There's a lot more to hearing than you think it is. Like for me, it's a multi brain process. It's kind of like a puzzle, right? Take in the context. Take in the little sounds that you hear. Take in the visual cues and then create understanding. And sometimes it can be very wrong and sometimes it's laughable. Audio processing disorders and sensory processing disorders are really hard to get a diagnosis and often isn't covered by insurance. 

Amanda: And that's because I feel like a lot of people don't understand how the sensory processes actually work. Cause it is a multifaceted process. I probably could explain like taste and smell, for example, are really closely interrelated.

I had a cold recently and it was like the worst cold I had and it wasn't COVID, I did test negative for that thankfully, but I hadn't been sick in like four years and I was like, it was so bad that I actually did like lose my sense of taste or at least partially because my nostrils were blocked and it was just so weird for me because I'm, my sense of smell is stronger than a bloodhound's. So yeah, I get what you're saying. And that kind of actually goes into number three a little bit. Which disability do people most doubt you on? Have you asked them why they don't believe you or why they have trouble believing you? 

Mackenzie: Yeah. There's a lot to say about this, but I feel like as of now, the most simple answer is probably autism because I don't have a formal diagnosis, so I don't have paperwork to give to people. So when it comes to going to a disability office to get accommodations, it's like, let me just try and make this seem like ADHD because I do have an ADHD diagnosis, but I still can't necessarily get the accommodations I need. But the other part is just Chronic health issues for me, like the how the world kind of views chronic illness and chronic health issues. It's like, it's not really real. And like, you kind of just Feel like you're insane your whole life because people especially western doctors focused on pharmaceutical avenues and whatnot over time just never believe in you. You kind of make it to believe that yourself is in your experience isn't real like I have to constantly tell myself that. Okay, so I do have cognitive disabilities based on health issues that I have, and one big thing that makes a difference in that is sleep, and then I also have insomnia, and like, I really struggle with sleep, so I never get good sleep, and it just perpetuates this thing. But trying to explain and get accommodated for chronic health issues when you're not physically incapacitated when it's not like so severe that people just don't want to accommodate it. And I've kind of just like given up a little bit in this last year just because I don't have a lot of energy to fight it. I tried to get flexibility accommodations. For my energy, my brain function is all over the place and flexibility makes a huge difference being able to rest when I need to rest and work when I need to work that has made getting through school possible. But I've been told that flexibility accommodations are only available to people that have unexpected things pop up. So even if I know that I'll have health flares and I know that I will go through periods of, you know, needing to rest and needing to heal, that won't be accommodated. But if something comes up, unexpectedly, that will be accommodated. So I'm kind of like I don't know, at this point now where I'm just trying to work with the system and not focus on perfection. Like, can I stay within these systems and not have to constantly fight in every moment? Just focus on, like, the bigger fights that need to be fought. It's hard. But I think brain fog, executive function, when I try to explain that to people, they just shut me out. They're just like, it doesn't matter. It's like, everybody deals with things like that. And the common thing I get to, as you mentioned, always like, you don't look good. XYZ. "You don't look autistic. You don't look ADHD. You don't look hard of hearing." Or people have these -- not only from media, but they have these associations about these diagnoses from maybe themselves. They have these diagnoses, but they don't really accept it yet. Or they have people in their life that they know that have these disabilities. So they think it's very in line with those people in their life or their own experience. And because your experience is different, it's not real. And so that's actually a common thing that I've experienced, which I didn't really expect. But people with your own disability is actually in a way less accommodating because they think that they know what you're capable of and they don't really understand how all these different disabilities intersect and interact. It's never just one thing. 

Amanda: Yeah, it's interesting you point that out because my wife has definitely complained about this with me before where because we're both autistic, I wouldn't say I expect for autism to be the same as mine. But what happened with me was I was basically told I was stupid my whole life. So what that caused me, and even though I'm not, I didn't realize my brain and process things so much faster than most people, even with compared to high functioning autistic people, I'm pretty fast. So what would happen is I would process something and she wouldn't process something as quickly, but I assumed she was either ignoring me or just wasn't answering me on purpose. And that would sometimes cause fights between us just because, you know, in my mind, she's so much smarter than me. So it's like there would be misunderstandings like that. And it's like you said, where If people have a similar condition as you or me, then it's like, they automatically assume our condition is like theirs. I had this professor this term who had a child with autism and the way their child really excelled in classrooms was really open ended instructions for assignments. I'm the opposite. 

Mackenzie: No, thank you. <laughing>

Amanda: And it's like, you know, and I know I've talked about this with you, and I think you're like this too, where we need such specific A through Z instructions, like, okay, what, how many pages do you want? What format do you want? What font do you want? What do you actually want this paper to even look like in terms of indentations and stuff like that? What information do you actually want me to cover? She did not get that, and she got a little bit better about it, and was a little more specific with instructions later on, but she was just really shocked that I needed such structure with my assignments because her child functions so much better without such structure. She functions so much better open ended, you know? Mm hmm. So I get what you're saying, and it's And even with professors who have the condition where they consult, not consulted, but it's like they talk to me about like getting a formal diagnosis and just the difference of symptoms and they find that very interesting. Or they have loved ones with more severe autism and they've kind of find it almost sad that I can live on my own and live independently. And it's like, well, their child ever kind of get to like that. And I'm like, well, I'm not a doctor and I'm not a diagnostic person, but generally autism doesn't. 

Mackenzie: No, yeah, it doesn't go away.

Amanda: We don't grow out of it. 

Mackenzie: Yeah, it's just how we're wired. And, okay, another comment I get a lot when I try to talk about autism is, or, you know, Autism Spectrum Disorder, ASD. It's not like, oh, everybody's on the spectrum. You know, it's a spectrum. And I just find that to be the most, It's the worst thing that someone can say in the moment because it is a spectrum, but it's a spectrum of autistic experiences and processing and brain things. It's not a spectrum from non autistic to autistic. Yes, neurodiversity exists. All our brains are wired differently. But saying that is just In this question in particular, like, which disability do people doubt you the most? People believe in your disabilities. I don't even view it as like,   is it a believing thing? It's like a constant invalidation, belittling, minimizing, not understanding the impact that everything has on my overall well being and on communication, being able to communicate or be communicated with. Yeah, now I hear you. 

Amanda: So, for the next question, in worker school, have you ever had an authority figure deny you accommodations because they didn't believe your disability? How does this impact your ability to work or function? 

Mackenzie: I just, I'm gonna read kind of what I jotted down initially and then see where, where I go with that. So, I said yes. I mean, obviously I've had a ton of experiences throughout my life with this, and teachers, you know, bosses, just people in your life don't always ask, just let me know what you need, right? But, what I need never falls within the context of like acceptable needs or like what people have determined to be an acceptable or reasonable need. So it's hard. I've been thinking about this a lot lately. I was like, I do know what I need, but I can't communicate what I need because people won't accept it in the context of, like, school and needing, like, flexible accommodations, I will go to teachers at the beginning of the school year and tell them, you know, this is what I need, this is why I need it, and some teachers are like, well, you need unofficial accommodation for this, and some teachers are like, okay, I understand. At the school I'm at now, I cannot get unofficial accommodation for it, so I resort to talking with my teachers about it and I've gotten some messages where it's like, yeah, just you know, email me ahead of time we can work with that. But then the second time I asked for flexibility, it's like "I already gave you an extension on one thing, not gonna give you another" and I was like Am I misunderstanding the situation from before or did we never lay down the ground rules because I was really trying to get you to lay out what the rules were so that it wouldn't be stressful later on and so it's hard to kind of pick one instance because there's moments every term where it's like yes I have documented disabilities but when it comes to accommodation like And I know we've talked about this before, but teachers really think that they're helping you by like forcing you. Teachers really think that they're helping you do better and that you're going to succeed in your life because they're pushing you. And I'm like, you don't understand how this pushing myself. Well, first of all, I can't get my brain to work for me when it's just not working. And second, if I push my nervous system past its edge, I will burn out and it's not the type of burnout that you associate with like normal workplace burnout, like autistic burnout is way different. Like I have these days where my normal level of hearing, like, I can't hear and like I hear all these weird like static and like I can't process any auditory information, visual information, like I have to like shut down and rest and it's been kind of scary to kind of understand what is happening and why it's happening. But my doctors have been like, "Yeah, that's autistic burnout. Your nervous system is just completely fried." And so I try to avoid that, but trying to avoid that, people are like, no, like we're just helping you because you're going to be more stressed out when you're behind on things. And I just don't understand why people can't believe that I know my experiences and I know my patterns. And at this point, like what you believe success to be does not look the same for me. There's no amount of pushing me. That's going to make that happen. 

Amanda: Yeah, I agree with 100%. So the example that comes to mind with this question is that general chemistry story I've told probably a million times at this point. So back in general chemistry three, this was literally the first week of the class, the teacher tries to introduce kinetics, at least to me the worst way possible through like an Algebra 2 example, don't ask me why she did this. I still think that's a terrible idea. There's no reason to break up a formula into multiple parts like that, especially when you use variables A and B. Anyways, so the way she did this was she basically broke up this really long algebra 2 questions into multiple parts, and I could do some of the problem, but not all of it, and of course my group got the part I couldn't do. I asked her multiple times, can you just walk me through an example? Can you get me started on this? Can you just, you don't have to do the problem for me, I just need to know the steps.  And she just told me, give it more time, keep looking at it, the answer will come to you. And she said this to me like three times, because I called her over three times. So by the time it came to our turn to do the problem, I of course could not do it and she just kept looking at me, and eventually I told her, I already told you three times I don't know how to do this, and I needed help. The answer is not gonna magically appear in my head. And I said this in front of the whole class, and eventually my partner solved it for me. Like, she specifically wanted me to solve it too, as well, it wasn't my partner. And she stalled the whole class for like 20 minutes for this. So I was really ***, I was angry. I was humiliated. I actually did file a complaint against her at the end of the term. And in fairness to this teacher, she actually did talk to me and an ADA representative about the incident. And it's like you said, in her mind, I was a smart, competent, capable student with how I presented myself. And she thought if she gave me enough time, I would get the satisfaction of coming up with the answer on my own. Another thing I get a lot with it, at least from professors that deny me the flexible attendance accommodation, or at least they try to. is the fact that they're just insistent that class participation is needed for a lot of things when it really isn't. Or they insist that group work is needed to learn how to work in the team when the reality is you're just learning how to be taken advantage of in a work group. So I hate stuff like that. I hate it when professors just automatically assume students all get the same benefit from the same format. And that's just not how it works. And whether you're neurotypical or neurodivergent, not every student is going to have that benefit, especially if it's like an all lecture class and it's not needed to go down every day.

Mackenzie: Yeah, I think you bring up an interesting point to when it comes to accommodation and at least having discussions like there's been many times when I just wanted to sit down and have a discussion with the teacher about like, this is like who I am as a student, who are you as a teacher, this is what I need support with, I, I want teachers to understand that, like, I really want to learn, like, I really want to do well in their class. I want to get the benefit of taking this class from them, their knowledge, whatever. But when it comes to, like, discussing accommodations or, like, why their format or structure doesn't really work with me, they get so defensive and they, like, take it so personally. And that becomes, like, this thing where it's hard to navigate because I'm like, it's not a personal thing. Like, I really want to work with you and do well in this program, this class, whatever, but like, I'm not insulting your personal, you know, I know that you put a lot of work into this class. It doesn't, doesn't mean that I shouldn't have access to it, you know, because. My brain doesn't work with the way that you laid it out to be. So it can be hard when it becomes like a really personal thing. 

Amanda: Oh, I have experience with that too. Like I had a professor, an Equine Industries professor last term. This was the professor who just insisted I had to drive down to Corvallis every week because of an in person lab. And to be fair, there were two lab sessions I would say that were needed to be in person. That was like taking the horse vital signs and wrapping a leg, which were pretty cool labs, I'll admit. The problem was she held it against me on a very personal level that I asked for the flexible attendance schedule. The most explicit example I can think of was she almost screwed me out of a whole lab session worth of points even though I was there. What happened was we were supposed to memorize the skeleton of the horse before the second lab session but I didn't know that until the day before. And the reason I didn't know that the day before was because I missed the Thursday lecture in Corvallis because, you know, I only had so much executive functioning and I just didn't go down twice a week. And I had gone down on Tuesday that week. Anyway, so she had said that Thursday the week previously, but she didn't announce that on email or canvas. And when I said that to her, that there was no announcement, she just said, you should have been in class. So, luckily for me, I had taken Comparative Anatomy and Physiology a term or two prior, so I actually knew the skeleton already, so she did not screw me out of that. Me and my partner got one of the highest scores in lab, and it's like, so she tried, she failed. There were two parts to that lab. One was the skeleton, and the other part was like, 4 H terms like barrel, withers, stuff like that. And my partner had been in course 4 H, so she knew all those parts. So it's just stuff like that, really deliberate things where it's like I can't call her out directly, but I did not trust her at all after that. I knew I stood with her, and I was not gonna, like, couldn't give her any excuse to deduct points from me. Yeah, but it's also situations like that where you know, you can't win with a professor no matter what you do anyways that okay, You know what as long as you're not directly messing with my grade. I'm not gonna waste my time trying to suck up to you Yeah, that's like i'm done with that 

Mackenzie: same That's why it's kind of like i'm not expecting myself to get a's anymore because I know that My brain, my body just don't work within a context where I can receive straight A's without having accommodations in some way. I'm just like, I'm fine getting C's, you know, passing classes because my only goals in education are to learn and take care of my body and my brain. And so, I just kind of have to do that in my own process. And if I don't fit within the structures, that is a grading system. Then I'm totally okay with that because grades don't mean anything to me at this point, as long as I can get something out of the class and it's not like a complete waste of time and energy.

Amanda: Yeah, I can't do that with grades. I'm applying to vet school. I have to get as many A's as possible. I actually did get an A in equine industries because thankfully it was a good class otherwise than that. And it was kind of funny. She ended up kind of screwing herself with lab anyways, because what happened was she kept insisting that lab had to be done in person. Otherwise, we couldn't do the online assignments, but turns out we could do the online assignments without going there in person. And because it was fall, it was getting cold, wet, and rainy, and students were getting less and less tolerant to that. By the time Week seven, I want to say, well, around hardly anyone was showing up and she really screwed herself completely on that because other students stopped believing her. And that's another thing that I think professors are really underestimated about students. Even neurotypical students are kind of going to learn or have their own limitations where it's like, Hey, there's only so much we can take and we don't really need your additional on top of everything else. So yeah, it's like just a lot of experiences like that where it's like, are you kidding me?

Mackenzie: I don't think, I mean, I just wonder if teachers ever think about the immense amount of privilege it takes to be able to just focus on school. There are so many people, even neurotypical people out there that have full time jobs, families, all these other things that impact their ability to engage with the content of the, whatever the class or program there is and I just find the messages you get so often are like if you can't do it you need to leave or find like a different program and that's a message I've gotten a lot over the years but something I've become extremely stubborn about and this time around with education because I'm like Uh, you know how many credits and like money I've wasted over all these years, like not being able to go in the direction that I want to go because nobody will give me the guidance or like, they expect me to have all this intuitive knowledge about how these systems work and just be able to navigate it perfectly fine and like get where I want to go. I just don't have that. And so just being told that like, this isn't the right fit for me, like whatever. I was like, so how many times do I have to go through this until I find the right. for me. I want this situation to work for me because I'm getting a scholarship. Like I have all these supports in my life that are, that I want to be able to utilize.

Amanda: No, I hear you. That's kind of where I was at with animal science professors who just wanted me to go down to their classes in person or insisting on that, even though it really was largely unnecessary. And eventually I just was like, look, I'm not going through what I went through in my 20s. I'm taking control of my own education. You don't have to take my disability seriously, or you don't even have to believe, I'm gonna do what I have to to succeed in your class, and I actually have succeeded when taking control of it. Do I go to every class, period, in Corvallis? No. Do I still succeed in their exams and get A's in their classes? Yes. It's like, just like that, where it's like Um, and I'm able bodied too, so it's like just keeping students actively out like that to me is just horrible. And I have pointed that out to university professors before, and I find this more of a problem with four year university professors rather than community college professors. Where they kind of forget that even neurotypical students, like you said, they're not all 19 or 20 year olds with no families. Yeah. A lot of them have kids, they work full time, they have other things going on in their lives, they have other commitments. It's like school just is not their first priority a lot of times.

And I find that professors with God complexes like that typically are like in pre veterinary and pre med programs, where it's like students basically do have to dedicate and revolt their entire lives around horses. And that's definitely the case with the core sciences, especially. The thing that I find really funny about that is that they're actually shooting themselves in the foot with that elitism model, because what's going to happen is you're going to be essentially. Barring more and more students from actually participating eventually to the point where you're only going to have, like, super rich, super privileged people who probably aren't going to want to do the discipline anyways. They were not gonna, people in those positions want to go into politics or business. They don't want to go into medicine or veterinary medicine. Another thing about that is that students are so burnt out by the time they get out of school or even start grad school that a lot of them fail out because they're just too tired. So that's, to me, they don't even have, they're on this, like, hilltop that's not even, that doesn't even exist. It was kind of built on old principles and old elitism beliefs that just aren't even possible anymore, you know? 

Mackenzie: Exactly. I wanted to ask you two about, um, workplace outside the context of school. Have you ever sought out accommodations like in a workplace setting? 

Amanda: So that's a difficult question for me to answer because I was diagnosed later in life first off. So the previous work experiences I had, I obviously didn't cause I didn't know I was autistic, but the last job shadow I had at a veterinary clinic in Sherwood. I actually did like openly disclose, Hey, I'm autistic. They didn't ask for paperwork, but I did openly disclose I was autistic. And that was a really good experience because, you know, most of the staff was autistic or ADHD, so that worked really well because I didn't have to mask or hide myself at all and I could communicate my needs very well. And recently at Oregon state, I actually have become a research assistant for a behavioral,   PhD doctorate. And I had to sign a bunch of paperwork actually right before I started this interview, funnily enough, and the occupational health hazard people actually had called me literally like in 10 minutes of submitting this paperwork, like they're super and actually talked to me about my autism. Cause it's like, Hey, you mentioned you were autistic and have anxiety on your paperwork. Can we talk about that a little bit? And I'm like, sure. Do you feel safe and can communicate your needs well? And I'm like, yeah. So the short answer is, so far, at least in the context is, yes, I've had good experiences. Uh, people either don't really ask about it or they just accept it. And I don't really feel like I have any issue advocating for myself in those settings. I'm not sure if that answers your question.

Mackenzie: No, yeah, I was just curious because I talked to my therapist a lot about this, about just higher education. And they tell me all the time that like, higher education is not what you think it is. It's literally just like, Most of the time you, it's just like an introduction, like a survey of information and you really do a lot of like learning in the field. And I was like, that makes a lot of sense because I mean, that's how I am. The best learner in general is hands on immersed in the field. A lot of times in education, especially if you're in like a more specific job. training type of program. I'm like, so if you're not willing to give me accommodations in school and you have these very high expectations about what this training program will produce as professional or whatever, that to me means I'm not allowed to ask for accommodations once I get to the workplace, right? So like, Students with disabilities, when they're taught these messages of like, Oh, I can't get accommodations in school, so I won't ever be able to get accommodations in the workplace. Like, I know that that's not necessarily true, but in my mind, I feel like I have never want to or feel like I should be able to finish school because I won't have a job that works with me. In my prettiest job that I've had, like, I have tried to seek accommodations for specifically my hearing. I sleep through my alarms all the time because, one, I'm a deep sleeper and insomnia, and two, because I don't hear my alarms. I even have, like, an alarm that shakes my bed and flashes lights, and I still sleep through it sometimes. I don't know how I do it. I'm like, either I'm subconsciously turning off my alarm when it goes off and I'm not like aware that it's happening or I like truly actually sleep through it. But I tried to get an accommodation at one workplace I was at because I was constantly sleeping through my alarms and like being late. And they had a very strict policy where if you're like late this many times you get fired. And so I went up to them and I was like, this is related to a disability. Like, can I receive accommodations for it? They went through this process to like, try and like investigate whether it could be accommodated when deep down I knew they were just like going through the process to like save their butts. There was no intent to ever like provide that accommodation and in the end it turned out that they weren't going to protect me in that way. And another job I was working as an assistant manager at a restaurant and I could not hear on the phone. And then like, as an assistant manager, I was expected to talk on the phone, right. And to deal with customers and things like that. But I couldn't hear on the phone. So I would constantly have to like, Hand the phone to some poor, like, server that I was working with. They would get yelled at by a customer and then have to, like, translate that to me and then be that interpreter. And they tried to get new phones and nothing worked, because I tried to be very honest with them about, like, can we get a phone that connects Bluetooth to hearing aids? Something like that. They bought a new phone, but they did not consider any sort of accessibility option, so it didn't make any difference. I ended up having to go to the office where it was like enclosed and private, turn on the speaker phone, all volume, all the way up, and then that way I could be able to hear a little bit better on the phone, but there wasn't a lot of ever attempts. It was. We'll try to, like, give you a solution to cover our butts, but, like, we are not going to come up with any real solutions. And so, I still have these messages where, even in the context of working at PCC and, like, learning about workplace accommodations that exist for employees, I'm just like, "Do you actually want disabled people to work for you?" Because it seems like you're putting up so many barriers and so many gates, like, gatekeeping, everything, to the point where, There's just no, we get a lot of messages where just disability is not accepted in any context and I just, I imagine the world where disabled people are involved in every workplace and every community and process and it just is so much inviting and better because We offer such a different perspective than the current norms, you know what I mean? So it's hard when you feel like every step you try to take to better yourself is just met with gatekeeping in every aspect.

Break #2:

Miri: You're listening to Let's Talk, Portland Community College's disability awareness podcast. 

Section 3: 

Amanda: And another thing. So first of all, I think you know this already, but the disability accommodation paperwork process and just kind of validating disabilities definitely comes from the medical model, not the social justice model, you know, just the diagnostic paperwork covering people's butts legally and stuff like that. I definitely experienced that at the university level where disability services said that they were investigating whether or not I could get remote attendance for a class that was supposed to be in person and I did get flexible attendance. We did kind of reach a compromise where I don't think anyone was happy. I don't think I was fully happy with the result. The university wasn't fully happy with the result, but it was a compromise that worked for both of us. So I definitely do think there are elements of just the fact that this medical model was set up by someone who wasn't disabled. And the fact that disabled people are supposed to meet a non disabled person standard somehow, and these accommodations are supposed to allow that and help us be included. But the reality is a lot of times they're being, they're being used against us as a gatekeeping method. So I think that's been my experience. It's like once the paperwork is sent off and once that teachers have, in fact, this is kind of advice I do give people that I talk to entering university and college, contact your instructors and just disclose your disability and tell them about your disability before disability services sends the paperwork because the months disability services does that they take over your narrative and that's all the professors are going to look at. But if you tell them your narrative first, then it's at least your voice is involved in that, and they'll be encouraged to talk to you more about that. I'm not saying it always works. I'm not saying that professors are always willing to hear you, but I do feel like it does set you up to have at least a conversation with professors where they're not automatically shutting you down with the excuse of disability services sending you their paperwork, and they just said, "Hey, I have your paperwork. I gave you extra test taking time. We're good. I don't have to listen to you beyond that."

Mackenzie: That was one thing that's been communicating to me a lot. It's like, you don't have to talk with your teachers about this. The disability office will do the talking for you. 

Amanda: I'd recommend against that, actually. The reason why is because it's like disability services and takes over your narrative.

Mackenzie: I just, I'm like, they don't even know who I am as a person and like, necessarily what I need as a student. And I, I just don't really understand that thinking because I'm like, oh, okay. So even though you're not, It's going to give me the accommodations I need. I'm not allowed to talk to my teacher about how I want to learn less from them as an individual.

Amanda: I just think it's strange. So I think we still have a long way to go, but I'd like to think we're making progress, you know?

Mackenzie: Oh, yeah. I think the conversation is valid whether we get to the end or not. I know you 

Amanda: said that you have diagnostic paperwork for some of your disabilities and some not, but even with the disabilities with your diagnostic paperwork, have you still had people doubt you despite that?

Mackenzie: It makes a difference to some degree. Like, I've always had diagnostic paperwork for my hearing, so I've always had protection in schools since first grade with hearing, and so having that diagnostic paperwork, having that 504 plan, having that like educational protection against disability has been important in my life, and I've come to the knowledge recently that that's actually a very hard thing for all disabled students to get. Especially minority students, students from lower socioeconomic status, from students of color, um, are not often given those types of educational protections, which is really sad. Just another example of white privilege showing up in the context of disability, but, like, ADHD, I feel like it's helpful to just because like, I know I'm neurodivergent and there's a lot of aspects to that that I don't necessarily feel like one evaluation or one piece of paper. Technically, it's like 14 pieces of paper, but will show. I feel like these days, especially, people have become so like, oh, everybody thinks they have ADHD, everybody thinks they have autism, and so, like, actually having that paperwork definitely makes me feel more comfortable going into situations. And I think having paperwork for other disabilities would help with that too, but I just don't always believe that it's necessary either, because I know who I am, I know what I need. Just because you don't necessarily believe me or want to accommodate for this doesn't mean that I still won't do these things for myself and find solutions for myself. I think the interesting thing about being hard of hearing, when you are hard of hearing and you're not completely Deaf and you communicate by speaking and listening and using hearing aids, Generally hearing, and this is not in the context of school, it's in the context of my peers, like since elementary school, I could show them my hearing aids, I could show them my hearing test, and like show them all the areas that I can't hear, why it's so hard for me, but like generally people still don't understand or believe that that is a thing that exists because they don't appear to struggle. And yet I've been bullied a lot over the years based on aspects of my hearing, like when I'm struggling to hear someone, I squint my face and I get really close, right? I can't really control that. It's just like a natural thing that I do to help me focus. And I have been bullied about that. Like, stop making those stupid faces at me, blah, blah, blah. And that was by an adult in a workplace who was 20 years older than me. And like, you know, you tell your friends, like elementary school, middle school, your heart of hearing. So they always do these stupid tests, right? Where it's like, can you hear me now? Can you hear me now? Or, like, sneak up behind me and, like, say my name. One time in college, I had a group of friends, in my room, and I have this, like, little tube that connects to my hearing aids that, like, is used for, like, parents or providers, so they can kind of see, get a sense of how the hearing aids are functioning. See if there's a malfunction to take them in to get adjusted. And so I let everybody listen to what it sounds like for my hearing aid to turn on. And then she'll just like hear what it sounds like through the processor. And everybody's reactions were just like, "Oh my God, that's terrible. How do you live with that? Blah, blah, blah." It was really eye opening for me, but it also didn't change how they communicated with me or changed my perceptions because outside that moment, they immediately forget. And I'm not going to walk around, you know, with a sign on my forehead that like says all these like invisible disabilities that exist for me. You know what I mean?  So I don't think any amount of paperwork proving that I'm hard of hearing would change people's opinions about whether or not I say that. Especially like during COVID, like I could not communicate with anybody. I read lips a lot to   communicate, to like support what I'm hearing. And I would constantly tell people like, "Hey, I'm hard of hearing. Can you like pull your mask down or really enunciate, speak up, reverberate when you're communicating with me so that I can understand you?" And people will just kind of like roll their eyes and like continue about what they're doing. But if you say you're Deaf, people are immediately change how they interact with you. So there's a lot of weird associations that come with being a hard of hearing person and existing in a hearing world. And it's, I don't know, it's a struggle. People just don't understand or believe what that experience is like and how it impacts communication on a daily basis.

Amanda: I don't know, I just think it's always really weird people give you a hard time about being hard of hearing, but I have to wonder, it's like, even if you were fully Deaf, would it really be that much of a difference? Because it's an invisible disability either way, you would need ASL interpreters either way, you would need closed captions either way, you lipread either way, what difference does it really make to the hearing community? 

Mackenzie: I think that's because if I speak, then people assume that I can hear. Right, or if I --

Amanda: And even the verbal-- sorry, even the verbal thing I always found kind of odd because even some There's quite a number of Deaf people who can also speak who are also verbal too, right? Yeah. So it's like, what does being verbal have to do with how well you can hear or not hear? It's just like That's just not something I've ever really connected either. 

Mackenzie: It's just like neurodivergence, hearing is a spectrum and everybody's experience with their contact with the medical system in which they're diagnosed. The medical system in general with hearing really pushes for hearing and not like Deaf centered practices like ASL or Deaf schools. I went to the audiologist recently because of the neurological stuff that I've been having and the changes in my hearing that happens with those neurological flares as I like to call them. And I had mentioned that I, you know, I'm really immersed in ASL these days and I'm really trying to learn ASL so that I can kind of have my life be more in aDeaf friendly way, so I don't have to listen and hear. And having that choice for communication for me would be a huge accommodation for me to be able to work in the future. My doctor told me, like, as much as ASL and theDeaf community is Great. They're like, we live in a hearing world and if you close yourself off to just the smallDeaf community, then you're really going to miss out a lot in life. And I just thought that was even like at my age and in our current day and age, I was like, really, you're really still spreading those messages to people where they need to take that journey on their own and figure out what's best for them. It was just a really gross experience. I did not like it at all. 

Amanda: I'm going to actually kind of do a confessional with my own son with that one. Because I feel like I asked Nya something very stupid in that regard too. So you know that TV show Switched at Birth? I remember watching one episode where the hearing character, I think her name was Bay, she was arguing with one of the deaf students because this deaf student was very much a representation of deaf community wanting basically only deaf people to use sign language and no hearing people allow essentially. And it was just kind of coming on common ground like that. So the reason I'm bringing this up is I think it's media representations like that where it might give hearing community people like me the wrong idea of where the deaf community wants to stay closed off. I'm not saying that's accurate in the slightest. I obviously wouldn't know that. But, I'm just wondering if gross ideas like you said, like from that doctor, is coming from stuff like that where it's just kind of bad media representation kind of in a similar way that Sheldon Cooper does to the autistic community. 

Mackenzie: I don't think it comes from a media representation or beliefs, I think it just comes from a very oral centric world where they just believe that you're gonna miss out on all the opportunities that life has to offer if you don't assimilate to the dominant culture. So I think that can be said to like why doctors push autistic people into like ABA, into behavioral therapy, it's like you need to conform to the standards. of the dominant culture or else you will not be successful with your disabilities. And I think that's just a completely wrong message. But I mean, it does stem from the medical model of disability and not a social model of disability. It's not a simple question to answer. And it's not, it's definitely a conversation [that] needs to be had among the Deaf community. Like I'm still just. Learning, but I think there's just a lot of associations with ASL and there's been a lot of appropriation over the years, which does make it difficult when just the intersection of hearing spaces and ASL, like, there's so much on social media these days with hearing people teaching sign language, um, as they're learning and just like teaching wrong things and hearing people naturally gravitate towards hearing people. That's just kind of the common narrative is like, and so they're more likely going to seek out being taught sign language from a hearing person. And being taught the wrong things, then like seeking out Deaf teachers, Deaf creators, and getting an actual depth perspective on the issues. So it's been a really long personal journey. And so going through it in an educational setting is really weird. It's really hard. Cause I don't think people understand like the personal identity journey that I'm also going on simultaneously impacting just a lot, there's a lot there being able to learn in the community or be exposed to little things throughout the way. I think it's super important, and especially not even just with ASL, but like, learning how to communicate well with people who use AAC devices, just like, learning how to communicate in the non dominant way with people. I mean, even just as an autistic person, my ability to want to engage in verbal communication is variable. If I'm shut down, like, I just don't want to talk, but I can sign, you know, and I can gesture, and I can give you things like that, but I just don't want to use my voice all the time. 

Amanda: No, no, I understand and well, I guess I understand the frustration and the identity journey because it's like when I was diagnosed with autism, it's like, I kind of figured out, oh, hey, t