Let’s Talk! Autism with Multiple Disabilities, Pt. 1, with Indigo Russel
Hosted by Amanda Antell. Produced by the Let's Talk! Podcast Collective, show runner and lead producer Carrie Cantrell, and production assistant Miri Newman. Transcription by Carrie Cantrell. Webhosting by Eugene Holden.
Let’s Talk! Autism
Autism with Multiple Disabilities
Amanda interviews Indigo about their experiences with the intersection of autism and multiple disabilities, and the view the world has on people with disabilities.
Hosted By: Amanda Antell
Guest Speakers: Indigo Russell
Produced By: Let’s Talk! Podcast Collective
Released on: May 23, 2024
Transcript: Let’s Talk! Autism and Multiple Disabilities, Pt. 1 With Indigo Russel
Transcripts generated by AI technology, edited by Carrie Cantrell for correctness, accuracy and accessibility.
Summary
In this episode of Let’s Talk Autism, hosted by Amanda Antell, the focus is on the experiences of living with autism alongside multiple disabilities. Amanda is joined by Indigo, a student advocate at Portland Community College, who shares her journey, daily struggles, and the societal stigmas she faces with both visible and invisible disabilities. They discuss issues such as medical trauma, the challenge of getting diagnoses, and the frustration of not being taken seriously due to age or lack of visible symptoms. They explore the importance of disability pride, the impact of societal perceptions, and the need for greater understanding and compassion from both the medical community and the general public.
Introduction to Let’s Talk!
Micah Read: 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 affect the opinions or positions of Portland Community College, PCC Foundation, or our community partners. We broadcast on our home website PCC dot edu forward slash DCA, on Spotify, and on XRAY 91-point 1 F-M and 107-point 1 F-M and KBOO! K-B-O-O Community Radio 90-point 7 F-M.
Meet the Hosts: Amanda and Indigo
Amanda Antell: Hello and welcome to this episode of Let’s Talk Autism. I am your host, Amanda, and today we will be discussing what it is like to live with autism and multiple disabilities. I was joined today by Indigo, who has shared their personal experiences and daily struggles as an individual who has to live with the assumptions and stigmas of both invisible and visible disabilities. I hope by the end of this discussion you will think twice about how you approach disability and that your perception of it has been challenged. Yay! So, thank you for being here with me today, Indigo. Can you start by, can you start by giving your name, your pronouns, your occupation slash major, and your disabilities, or disability, depending on how you want to answer that?
Indigo Russel: Yeah, my name is Indigo. I use she, they pronouns. Well, usually just she with the people I trust, but I am a student advocate at Portland Community College and my major is in social sciences. I’m going to Portland State. And my disabilities I have a problem with my legs where I use a wheelchair off and on. I’m autistic and my mental health also creates disabilities with my bipolar depression and anxiety.
Amanda Antell: My name is Amanda, I use she, her pronouns, I’m getting a post bacc. animal science degree with a pre vet option at Oregon State. I will be applying to veterinary school this year, and I am diagnosed with autism.
Indigo’s Journey with Disabilities
Amanda Antell: When we’re, so Indigo, to start off our conversation on living with autism with multiple disabilities, I hope this conversation gives you the chance to talk about the daily struggles you have. As well as just how society treats your disabilities. With that in mind, may I ask when you were diagnosed with your disabilities, and have you had to live with them throughout your life, or did they develop later on as an adult?
Indigo Russel: So first I want to say, I’m really grateful for this opportunity to get to talk about my struggles and also my triumphs, or I don’t know if I should say triumphs, my gratitudes for my disabilities. Cause I don’t get to talk about them very often because they often make people uncomfortable. And I really hate that about what people generally don’t like talking about. They just don’t like hearing about what the daily struggles are because they either feel pity or anything like that. So, I haven’t actually been diagnosed with a lot of my disabilities. And I think that says a lot about not just my medical trauma, but How hard it is to get access to care and just getting help with my disabilities in general. I have been diagnosed with bipolar, but that was only very recently. people were like tiptoeing around that diagnosis ever since I was a teenager and didn’t really diagnose me until I finally got a new psychiatrist and I finally have been put on a med that works for my mental health because I hadn’t been properly diagnosed. And since I’ve been diagnosed with bipolar, I’m finally on lithium. And now I don’t experience suicidal ideation anymore. And I had been experiencing suicidal ideation since I was 12 years old. And that was really difficult for me and caused a lot of problems. And I’m so grateful that I’ve been put on a med that works for me. And I’m sad that it took so long. But with my other disabilities, I haven’t been diagnosed with autism yet. I haven’t been diagnosed with, my problem with my legs that causes me to use a wheelchair. I’ve been to the hospital and the ER many times for the issue with my legs. And I haven’t been diagnosed yet. And it’s really frustrating. Part of the reason I think is because of my age, I’m 21 years old and people don’t really believe that when you’re young, you can have severe disabilities. They like to think of people who are young as Oh you’re healthy. Oh, you can walk, you can do all these things cause you’re young. But disabilities are for people with all ages. It’s really frustrating. I had the thing with my legs start around the age of I think 18. So yeah.
Amanda Antell: Thank you. That sounds like really frustrating and kudos to you for figuring out a way to, cope with it and going through all that frustrating process of finding a good psychiatrist.
Amanda’s Autism Diagnosis Story
Amanda Antell: For me, I don’t have to deal with multiple disabilities like you do, but what you said about not being taken seriously, and the whole tiptoeing around your bipolar diagnosis, that reminds me a lot of my own experience with my autism diagnosis, because I’m a 90s kid, and back in the 90s, it was just thought that autism just did not happen in girls or people raised as girls. Unless if it was like super severe and even then, it was considered extremely rare. So, my mom had tried to bring me to several different, to, I want to say at least three different specialists who are genuinely qualified pediatric psychiatrists. And they just did not want to give her a diagnosis. And they told her that I was just different. I just didn’t learn well in a traditional classroom setting. They actually did tell my mom that I would grow out of it, and that kind of forced her to try to make me normal, and that was obviously not good, and there’s a lot of trauma stories behind that one, but I didn’t get diagnosed until I was 31, and the only reason I had even heard of autism was because of my mother in law, and she was the first one to suggest it and she had suggested it because Autism ran in her family and the only reason I sought an official diagnosis was because my therapist just told me, look, you really need to see a specialist. I think you’re autistic and it only took 3 sessions with a psychiatrist for them to say, yeah, you’re autistic. And I knew the first meeting I met you, but the required amount of for diagnosis is 3 appointments. So, I definitely hear you on not being taken seriously or people not wanting to give you a diagnosis because of stigma or just what the current diagnostic material says at the time. Because in my case, diagnosing me with autism would have been going against the grain, and just going against what the APA was saying at the time about autism.
Indigo Russel: I think a lot of people don’t take me seriously because I don’t have diagnoses also. And that’s really frustrating because you don’t have to have a diagnosis to be seen that you’re struggling with a disability or that you have a disability. I’ve had people be like, well, are you actually disabled? Like you haven’t been diagnosed with disabilities. And it’s just like, are your serious right now? Come on. I’m disabled and I don’t need to prove it to you, but it’s really invalidating when people don’t believe I have disabilities because another thing is I don’t use my wheelchair all the time and people think Oh, you’re just using your wheelchair for attention or so people can take care of you. Or they don’t really believe me. And they think I have to be paralyzed or not an ambulatory wheelchair user to be valid as a wheelchair user It’s just like really frustrating. And I, I know a lot of people who walk and still use wheelchairs and I can’t use my legs all the time and I have weak legs and I get lightheaded when I stand and sometimes my legs freeze, and I can’t move my legs at all. But people don’t know that when they see me get out of my wheelchair and they’re like, Oh, you were just faking or, why are you using your wheelchair? And I hate that there’s all that stigma around it. And I don’t like it when people, I can feel their judgment in their eyes when they see me get out of my wheelchair. And it makes me not want to get out of my wheelchair, you know, it’s just, I get imposter syndrome, too.
Amanda Antell: I wouldn’t say I ever get imposter syndrome, I know what I have, and I know I’ve always been different throughout my life, so my autism diagnosis just was a really big closure thing for me. And another thing is I know my experience. I’ve lived my life. If people want to question me, that’s their problem. At least that’s how I look at it.
Challenges of Living with Disabilities
Amanda Antell: And in terms of the invalidation piece, I obviously don’t have the issue with the wheelchair you do. I will say that I’ve had multiple instructors say to me, Are you sure you’re autistic? You don’t seem autistic. And are you, or are you sure you need these disability accommodations, because I often do disclose autistic to instructors at beginning of the term every time, if they have a conversation with me afterwards, because I always offer to have a conversation about it with them. They’re usually surprised I identify as autistic because I can have actual full conversations with them because the idea, they have on autism is just, nonverbal or not very verbal or something. I’m not really sure what their idea of autism is whenever they talk to me, but apparently, I don’t really meet the mold.
Indigo Russel: Yeah, I have that too. My dad doesn’t believe I’m autistic and I think that’s because he’s autistic too, but I always had sensory issues as a kid, and there are so many signs pointing to my autism, and it makes me angry that, no one ever picked up on it, and Oh, and I was going to say, I didn’t mean to say that you were struggling with autism, I just meant to, as in, also. Like, I also struggle with that, but I too take things very literally because of my autism.
Amanda Antell: Where are you in your diagnosis journey, and what barriers have you encountered?
Indigo Russel: Oh gosh. So many barriers. In my diagnosis journey, I am in my disability pride era, where I’m really grateful for my disabilities and all the opportunities they’ve brought me. And I’m in an acceptance of where I’m at. And barriers I’ve experienced, I’ve had doctors and psychiatrists and therapists drop me a lot of the time because they think my issues are too severe for them to deal with. So, they just like they say, Oh, I’m not a crisis therapist or, Oh, you need to see someone else for this because your level of severity is too high for me. That’s something I struggled with a lot is getting appropriate care. I have trouble taking care of myself and it’s really hard not having family in the area or anyone to ask for help. And it’s really hard to not be like productive because a lot of the way I’ve been trained with capitalism is that I have to be productive in order to have value, or I have to be productive in order to be happy. And I have to reframe that because I have to realize I’m not going to be a productive member of that society like everyone else, or at least the idea of what productive means to everybody else, because I’m being productive in a way that’s Oh, I’m taking care of myself. I’m becoming more of who I am in myself and I’m being productive because I’m loving myself and I’m helping other people because I’m staying alive. But I’m not productive in the ways that like, I don’t get a lot of things done for work. I sleep all day. I’m in bed all day because of my pain. And I guess we’ll get more into that later about how daily life is for me but. I don’t know. I experienced a lot of barriers to care, and it can be really difficult.
Amanda Antell: Thank you. That sounds very frustrating. the Biggest barrier I had was honestly just initially even hearing about autism. And again, it was just the fact that it really was thought that I was essentially too high functioning to have autism. For the longest time, and it’s just this more recent attitude change where, yes, autism can happen in girls and people raises girls. Can I ask a follow up question to this? Would you say it’s because of the way your symptoms present themselves that physicians and psychiatrists often don’t know how to treat you?
Barriers to Medical Care
Amanda Antell: Do you think that’s part of the issue or it’s the fact that they are just too afraid to diagnose you? Because that’s sometimes the indications I hear when I was younger when my mom was trying to get me diagnosed. Basically, medical experts were just afraid to take the plunge with me with the diagnosis. Do you think that’s a similar thing with you or not?
Indigo Russel: I don’t think it’s the symptoms themselves. I would say because I’m disabled, it’s hard. It’s hard in two ways. It’s hard because I’m disabled and because I’m disabled, it’s harder for me to reach out and go to those doctor’s appointments, make those phone calls, get the access to the care. Because of my disabilities, it makes it hard for me to stay on top of those things. But also, doctors don’t take me seriously. And I don’t know why it’s taken so long for the doctors to diagnose me. But I think they also gaslight me a little bit minimize it, I guess is a better term. I’ve had doctors say the thing with my legs is just a result of trauma and that it’s because of my trauma that I’m experiencing these symptoms.
When it’s obviously something a lot more than that and more serious, and it’s not just because of trauma.
Michelle Vinjamuri: You’re listening to Let’s Talk, Portland Community College’s disability awareness podcast.
Amanda Antell: That must be pretty frustrating when you know that it’s something else and the doctors or whoever you’re talking to is just saying it’s something else.
Indigo Russel: Yeah, it is. Also, another barrier that I’ve experienced with my disabilities that I forgot to mention was it makes everything harder because the world isn’t set up for me or people like me. For example, food. Like I have to get transportation to the food. I have to get transportation to the groceries How am I going to pay for the groceries because I can’t make a living wage because of my disabilities How am I going to bring the groceries up to my apartment after I am finished grocery shopping? Because I can’t carry the groceries. so many things that go into it that I really need help for that I can’t do myself and I’ve tried to get on disability. I’ve been applying for disability for three years now. I’ve been denied many times and I think the reason I’ve been denied is because I don’t have those diagnoses and it’s really frustrating. Because I can’t make a living wage. And they’re basically saying, you’re not disabled, or you’re not disabled enough to be on disability. Really, it just makes me angry, you know?
Amanda Antell: Yeah, and you have a right to be angry. That really sucks.
Daily Life and Routines
Amanda Antell: What is it like living day to day with multiple disabilities? Do you have a caretaker to help navigate these difficulties? If not, how do you handle these challenges by yourself?
Indigo Russel: So, day to day life. I have trouble keeping routines but it’s something I’m working on. I think that’s because of my neurodivergence I can’t really keep a routine, but I’ve been waking up at 8. 30 or around 8. 30 every morning taking my meds. And then I try to get energized to clean my cat’s litter box, feed myself do all the things I need to do. But sometimes I usually just lay down and sit there because when I stand up, I’m too lightheaded to do the things that I need to do, or I can’t get the energy to do the things I need to do, or I’m in pain and I can’t do the things I need to do. And then I feel shame about that because I’m like, oh, I should be doing these things. I don’t like that I feel ashamed because I should be accepting myself this is where I’m at. It’s okay that I can’t do these things. It’s not my fault. If I really could do those things, I would do them. I just like having more self-love about it. hold myself to the expectations of what I think other people are capable of doing and what I see in media and what I hear other people doing and like, Oh, I did all this stuff today. I was so productive. I think a lot of disabled people do compare themselves in that way. Like I do. And I’ve been trying to steer away from that because. I’m myself. And I love that it’s me. So, I love me and, I don’t have to be this like way productive person in order to love and accept myself.
Amanda Antell: Yeah, definitely. And it’s kind of interesting you bring up comparing yourself to other disabled people.
Media Representation of Disabilities
Amanda Antell: When you say that, especially with media representation, do you feel like when you see media representation with characters who are either in a wheelchair or who have multiple disabilities, do you even feel like they even represent the daily difficulties accurately from what you described what you feel?
Indigo Russel: No, I don’t think it’s. It’s displayed accurately, or I don’t see a lot of people with multiple disabilities in media. For example, I was just talking about this with some of my friends, the show Young Sheldon who is an autistic character who doesn’t even come out and say that he’s autistic, but it’s obvious he’s autistic.
Amanda Antell: A lot of people hate it when people say Sheldon’s autistic.
Indigo Russel: Oh, really?
Amanda Antell: I do agree with you, that they try to make him as autistic as possible in young Sheldon. But if you look at earlier Big Bang episodes when Sheldon was actually somewhat likable and funny, he has autistic tendencies, but he is also a real person. He’s not like, this caricature of autism that they later made him into Big Bang, and they really leaned into that big time in Young Sheldon, and I hated that with the character. I never even liked Sheldon much as a character anyways. But when they really leaned into his character, they just basically made him the most dislikeable person possible because they just essentially looked up high functioning autism and just made him essentially a textbook definition of that. So, you can call him autistic, certainly. I don’t think you’re wrong about that, but what I would say to that is, a lot of autistic people, at least I personally, just gets under my skin when people bring up Sheldon as autistic representation. To me, if you’re going to go for an autistic representation in media, please say HouseMD.
Indigo Russel: Oh, I’ve never seen House
Amanda Antell: Oh, HouseMD you’d actually like, especially because you do have physical disabilities. House actually walks with a limp. There are actually separate episodes where he gets into arguments with people with different disabilities, like he gets into a fight with one woman in a wheelchair, another family who has dwarfism. To me the show did this in a way where they acknowledge and gave voice to these disabilities, they didn’t make those disabilities the central point to these characters, it just stuck to the point of medical diagnosis and medical mysteries. And House just basically took in the disabilities account when making a diagnosis, but he still didn’t make these people their disabilities, if that makes sense. And that’s because House really hated being identified by his leg, and he was constantly in pain from his leg. So, I really recommend House MD, I think you’d like it. I’m not saying it’s perfect, but it does have some of the best writing and some of the best autism representation I would say I’ve ever seen on a show.
Indigo Russel: Yeah, I hate that, when we see people with disabilities in media it is, it represents all of them in the show. And you don’t see them beyond their disabilities. And I think that goes to say how people see me in the real world. they don’t see me beyond my disability, or they don’t see my disability at all. It’s either goes one way or the other because they don’t take into account that I’m disabled, or they just don’t see me. I just don’t feel seen.
Amanda Antell: One piece of media I can think of is, I’ve never seen this movie for dyslexia, I just know that this is often referenced with people in wheelchairs and physical disabilities, like Ironside, it was, about this cop in a wheelchair, if I remember correctly. And the reason I bring this up is that, is it good or bad to have badass characters in wheelchairs, or maybe Joe from Family Guy would be a better example. I don’t know, what are your opinions on things like that, making people badass in wheelchairs? Does that kind of help or not help with people with physical disabilities?
Indigo Russel: I’m not sure. I think it can go both ways because I think. Me being seen as someone who can be sassy badass confident. Like, just like really in my own skin and loving myself. There’s positive sides to that because it’s I can be seen as you know a whole human being who can stand up for themselves and just be confident and my own person, but I think it’s important that, there’s a wide variety and a spectrum of how we’re seen with our personalities and who we are as human beings and I don’t like it when we’re only portrayed in one way. So that can be a downside to it. It can be seen as, oh they’re trying too hard, in a way they’re trying to be inclusive or they’re trying to I don’t know, do you get what I’m trying to get at?
Amanda Antell: No, I hear you. I always wondered this too, about characters like Joe from Family Guy and Ironside. I’m pretty sure there are others. Those are just the two main ones I can think of. Do they create unrealistic expectations for people with physical disabilities as well, or am I misreading that?
Indigo Russel: I’m not sure on that. I can’t speak for everyone who has physical disabilities, but for me myself it does help with disability pride in a way because we’re seen as loving ourselves and being proud of our disabilities.
Amanda Antell: Yeah, that makes sense. And yeah, I was just always curious about that with media representation and just whether or not it has been good or bad for people with physical disabilities. Because I can tell you with autism, it’s been mostly negative, but I can think of a couple of gems, but that’s a separate discussion.
Going back to the discussion a little bit, do you have a caretaker for your disabilities?
Struggles with Finding a Caretaker
Amanda Antell: And if not, what are the challenges and barriers in getting one?
Indigo Russel: So I don’t have a caretaker currently and that has been really difficult finding one because I tried going through insurance and going to DHS to get a caretaker and they kept just pointing me in circles and I would go to one office to turn in an application and it was really hard to get down to the office and I had asked for friends to bring me and then they would say oh this office is closed or oh, you need to go to this office then finally I went to a disability office For DHS that multiple sources had told me that this was the place to turn it in and then they said, Oh, this is the one for people who are older, who are aging and have disabilities.
And so, I was like, okay, then can you fax my application to the right location? And they’re like, yeah, sure. And then I called them and then they were like, Oh, that is not secure enough. That’s not a secure enough way to turn in your application because it’s not confidential enough.
And I was like, okay should I email it? And they’re like, no, you have to go in person to turn it in. And it was just so frustrating. why can’t I just turn in my application to get a caretaker? And I finally gave up because I’m switching insurances anyway. And I’ve been looking for a caretaker online and using care. com, and care. com doesn’t even have a section for people with developmental disabilities or people with disabilities in general. It’s childcare and senior care and housekeeping. And so, I haven’t been able to post an application a job opening for that. And I’ve been looking in the other sections and I can’t find anyone who can be my caretaker. So, it’s just been really difficult.
Amanda Antell: I know that this is probably not an option for you, but do you have any idea what the out-of-pocket expense would be for a caretaker?
Indigo Russel: Yeah, it’s pretty expensive. It’s like 25 an hour. And if you’re adding up the hours for how much, Like about the end of the week, I would probably need at least eight hours of care. And you can imagine that’s not really doable for most people,
Amanda Antell: And with 25 an hour, would that be like a professional at home care nurse, or would this just be just any person that they’d hire? Essentially, is this a specialized nurse or profession that would be hired, or is this just anyone?
Indigo Russel: just anyone.
Amanda Antell: Interesting. The reason I ask that is because when my grandmother, unfortunately, developed dementia Before she died and towards the end of her life, my mom and her sister were discussing like, end of life care, whether or not she should be in an assisted living home and whatnot. And when they did try to have an arranged, and when they looked into at home nurses, it was more expensive than 25 an hour. I can tell you that. I don’t remember the exact amount, but it was definitely more expensive. So that’s just what made me wonder because. I can tell you just even without it, without even trying to go through insurance, I think they did try to get it covered by insurance, if I remember correctly. that was just a hassle, just finding someone and just even having someone in the house that my grandmother would accept.
Indigo Russel: Yeah. It can be difficult to find the right people. And I think it should be more accessible, for people to find care because before, my dad was taking care of me and then he moved to Florida. So, I’m doing this all by myself and I’m doing it, but it’s really just beyond me.
Like I should really be receiving. Cause like my apartment is a complete disaster, haven’t done the dishes in who knows how long I have trouble feeding myself, clothing myself, I don’t take showers… Mostly the cleanliness stuff, but it’s like really bad. Sorry, I feel like I keep saying oh, it’s so difficult It’s so difficult, but I don’t get to talk about this very often and it is difficult.
So yeah.
Amanda Antell: And yeah, I would say first of all, don’t apologize for describing how difficult your life is or saying it’s difficult, because you’re right, it is difficult. And I’m sorry that people have told you that, have made you feel like you can’t talk about these things, because this is your life, it’s nothing to feel uncomfortable about it, it is what it is.
And to me, if we don’t give you space to talk about it, how are you, I don’t know, how are people going to know something’s wrong?
Indigo Russel: Oh, Thank you.
Amanda Antell: Going back to an earlier point, this is something I’ve always wondered about people with physical disabilities in wheelchairs, and this might go into why a lot of people with disabilities feel invisible by the public. As a kid, I was taught not to stare and not to ask questions to people who are in wheelchairs, and I try not to stare, obviously, but, say I get into a conversation with someone on the Max in a wheelchair, that sometimes happens just because, I’m bored, and I’m like, okay, I’ll just engage in conversation while I’m waiting to get to my stop.
Is it okay to ask about the disability or not, if I may ask.
Navigating Questions About Disability
Indigo Russel: I think it’s different for each person but for me personally Sometimes I wish people would ask questions because then people aren’t assuming what it’s like for me. And I think it’s different when you’re asking about what the disability is. That’s a little different. That’s Hey, that’s not really your business to like, ask what my disability is. But if you’re asking like, like, how do you reach the elevator buttons when you’re in the wheelchair or like would you prefer me to wheel you out, so you don’t have to have the elevator door closed on you each time you’re trying to wheel yourself out and you keep missing the entryway?
I wish people would ask and be more open about things like that because, it removes some of the stigma for me at least. But, you know, it differs from person to person.
Amanda Antell: Thank you.
The Impact of Social Attitudes
Amanda Antell: The reason I ask is because I don’t think, at least when I was growing up, my mom just said, don’t stare and don’t ask questions. And I think that, and I’m just wondering if that kind of just translates to a lot of abled bodied people when they’re adults, where we think that if we don’t ignore them, Essentially ignore the person in a wheelchair, or the person on the scooter, or the person with multiple disabilities, we’re doing them a service by not making a spectacle of them, or not making them feel uncomfortable. based on what you’re saying, is that true? Are we actually doing the right thing here? And I’m not trying to make this conversation about that, but I just thought that I don’t think I’ve ever really asked that question to someone who is actually disabled.
Naia Holte: You’re listening to Let’s Talk, Portland Community College’s disability awareness podcast.
Indigo Russel: Yeah, if you think about where that stems from, I’m thinking maybe that people say that because they think it’s something to be pitied or something to be ashamed about, or that we’re ashamed about it, or that we’re self-conscious about it. When really, it’s the able-bodied people who are self-conscious about it and feeling the pity and the shame. And, it’s more to cater to the able-bodied people to not stare, to not ask questions, I feel like if that makes sense, because we’re not being seen we’re being ignored. And I think that goes into a lot of parts of my life, like the being ignored thing.
Personal Experiences with Ableism
Indigo Russel: Cause like, when I’m trying to cross the street, cars just fly by me forever. And I’m like, come on, even when I’m with my cane and not my wheelchair, the cars never stopped for me unless I’m like aggressive about it. And sorry, my cat is taking over the computer. And I think it’s important to see us and not try to not look at us. That’s more weird to me to not try to look at us. I don’t like it when people gawk though, that happens a lot. People gawking at me, come on. You’ve never seen a person on a wheelchair before, but that’s a little different.
Misconceptions and Stereotypes
Amanda Antell: Yeah, because to me that attitude is similar to almost to how we treat honestly, race and invisible disabilities where I disclose I have autism and Professors often tell me that they don’t even feel like they can ask about autism unless a student or someone else actually openly invites them to. And to me, how are you going to learn about autism if you don’t offer an ear to the students? How are you going to learn about autism if you’re not actually talking to anyone? And going to the race thing, it reminds me of this attitude white people had a while ago, where it was thought to be a compliment or a service to people of color by saying, I don’t see color. I don’t know, maybe I’m off base there, but that kind of just reminds me of that, at least the attitudes you’re talking about.
Indigo Russel: Yeah. Cause, you’re not seeing the person, I want you to see my disabilities. I want you to acknowledge them because it’s a part of me and it’s part of who I am and it’s important that people acknowledge that
Amanda Antell: And to me, by doing that as well, you’re also discounting the person’s own experiences, because you’re discounting a whole part of their identity, right?
Indigo Russel: Exactly. Yeah.
The Reality of Living with Disabilities
Amanda Antell: How would you say people generally treat you? Do you feel that people see past your disabilities?
Indigo Russel: I feel like there’s a thing that I’ve realized that I either inconvenience people too much or not enough or not. That’s not how I see it, but that’s how other people treat me. Like I’m either too much of an inconvenience or I’m not inconveniencing them enough. And they apologize over and they’re like, Oh, I’m so sorry. Oh, I’m so sorry. And it’s more of like, they’re saying, Oh, I’m so sorry. You’re in a wheelchair. Oh, I’m so sorry. Like the pity or like the kind of feeling sorry that I, yeah, you know what I mean? It’s just kind of like they see disability. As a curse or something that’s unfortunate. And that’s not how I see it at all. And I’ve had TriMet Lyft drivers, TriMet Lyft, the disability service that buses people places. I’ve had TriMet Lyft drivers. Say things like, Oh, I feel so fortunate that I’m not like you, you know, it could be so much worse for me. I could not be walking, things like that. They say that to me. I’m like, wow, you really want to say that to a disabled person? But that’s really how they see it. They see it as Oh, I’m so lucky. I don’t have to be in a wheelchair. Oh, I’m so lucky. I can walk or, Oh, I’m so lucky. That I’m not disabled in this way.
The Importance of Disability Pride
Indigo Russel: I’m the lucky one and I feel like my disabilities have opened up a whole new world for me. And I feel like my disabilities help me be more compassionate to other people. Like I see the world in this whole new, beautiful way. And I’m grateful for my disabilities and it’s not a curse to be in a wheelchair and it’s not like a bad thing. And yeah, it can be hard sometimes, but that’s only because of how the rest of the world perceives it. And that’s only because of the barriers that the rest of the world puts up. It’s not because of the disability itself. At least that’s how I feel about my disabilities. And yeah, I think I got my point across there.
Amanda Antell: Yeah, I think you articulated it pretty well and I think this question relates more to what I asked you before, like is it okay to actually ask these questions to a disabled person, whether they have a cane or a wheelchair? And I’m just trying to think like, when people look at your disability, they obviously, what you just said, they’re thinking, oh, that must be hell on earth to live in, and I’m not saying your life is easy, obviously, and I’m not saying my life is easier, but it’s just interesting the assumptions people make about other people. You know? like with my autism, the biggest assumption I get from people in my classes, at least at Oregon State, is that you must be so gifted, you must be so smart, because you can articulate yourself so well and have a conversation. And I think to myself, what are you basing this off of? And how many autistic people have you actually spoken to? what conversations have you actually had?
Indigo Russel: Yeah, that’s a good way to put it too. Yeah, I think. That’s why I want to stick around disabled people because like they just get it in ways that able-bodied people don’t. And I feel like I don’t want the world to be sorry for me and I don’t want people to see me in a wheelchair and be like sad for me because it’s not a sad thing. The wheelchair helps me. It makes me happier. It helps me function. It helps me Be able to get around, and the wheelchair is freedom to me. It’s making the world more accessible to me, even though it’s not accessible to use in certain spaces because of the way the world is, but it does make things more accessible. for example, I don’t have to stand for long periods on foot when I’m lightheaded and feel like passing out and it makes me happy to be in my wheelchair and a lot of people don’t get that.
Amanda Antell: Yeah, that makes sense. And like a comparison I would draw to that with my autism is a lot of teachers assume I need a break in class or in lab or something because in lab in particular you have to get a certain amount of tasks done in three hours and I’m like, it actually is a lot worse for me if you have me go on break because I’m breaking my concentration and breaking my zone. I need to get this done. I just need to get this done and go straight through it. It does not help. Breaks work for a lot of people, but they don’t work with me. So, it’s just also making assumptions about what would make your life easier, if that would make sense. I’m not sure if you’ve gotten this before, but One thing that kind of surprises me when I do encounter people with physical disabilities is that they’re surprised and are very thankful I actually ask them if they want help, not even if they need help, but just if they want help. Is that just not an assumption people give normally? Where does that come from?
Indigo Russel: Yeah, they either assume I want help and they help me without asking if I can do it myself first or they don’t help me at all and I’m like, bitch, why don’t you just ask?
Amanda Antell: I think that kind of goes into what I brought up earlier, where we’re taught not to stare or gawk or ask questions about someone’s disability, and I guess that means to some people, is don’t assume they need help or assume they need help. There’s these two really big extremes in how we treat disability, and there’s not really a lot of middle ground.
Indigo Russel: Yeah, that’s so true.
Amanda Antell: So, what would you say the worst assumptions that able bodied people make about your disabilities? And what do you want to say to correct this?
Indigo Russel: I would say kind of what I was saying before that the world is harder for me because of the disability in a way that’s like I don’t have disability pride and, that you know, they assume that I don’t want to be in my wheelchair that if I could have another way, I would. Which is like, of course, part of me is like, Oh yeah, it would maybe be nice to not have to use a wheelchair, but a lot of people don’t get the concept of disability pride and that I can be proud of myself and proud of my disabilities and A lot of people assume that I don’t want to be disabled. And people also assume that I want them to be my caretaker. I’ve lost a lot of friendships over that one. And it’s frustrating. You don’t understand that I maybe just want a friend right now, and I, I’m not trying to ask you to be my caretaker.
Amanda Antell: Yeah, and that’s an interesting point you bring up because there’s one person, I know who has hearing aids and she told me early on, I don’t want you to take care of me. And I thought to myself, Why would I take care of you? You’re, what? So, I never really realized that was a thing either. People with disabilities often face, maybe, especially with physical ones, where it’s physical or even visible disabilities. People want to take care of you. Is it just like friends? I just don’t get that. why is there like this instinct to take care of someone when before you knew they had this disability, or even if you see them have a disability, why would you just make the assumption they’d want you to take care of them?
Indigo Russel: Yeah. Actually, a lot of my friendships go that way where they, like the friendship gets dismissed and they only focus on how they can help me or like they just have this like desire to take care of me and I think it goes into infant what is the word infantilization
Amanda Antell: Yeah, infan-. I-. I kind of pronounce it infantile-, infantiz-. Oh my god, even I am having trouble saying it. Infantization. I’m just going to say infantization, even though that’s probably the wrong way to say it, but–
Indigo Russel: Infantilization.
Amanda Antell: –I’ve had teacher I’ve had professors do that to me too, where I’m asking clarification on one part of an assignment, and they proceed to basically recite the entire assignment to me, and I’m like, oh my god. Please.
Indigo Russel: Yeah, infantilization it’s so prominent in my life like people calling me cute or like referring to me as their mom or no, the other way around, like they refer to themselves as my mom. And it’s like really uncomfortable. It’s like, no I’m, 21 years old. Like just because I have these disabilities doesn’t mean I’m a child. And yes, I sing songs and I make weird noises, or you think they’re weird, but I don’t think they’re weird. And I have a young sounding voice sometimes. And like all the things relating to not just my autism, but my other disabilities… yeah, I could see how you would think that I kind of am kid-like, but that’s your perception, that’s like not… I’m 21 years old, come on!
Amanda Antell: Yeah, and again, it’s just I almost feel like they want to make you a pet or something. Do you think that’s inaccurate or too harsh to say? Or, I don’t know, it just feels like they almost want to take away your, it almost makes me think that they’re unintentionally kind of reducing you as a human.
Indigo Russel: I do like to meow a lot no I’m kidding, no I actually do meow a lot, but cause I, that’s just me. Anyways I think it is part of the dehumanization of disabled people for sure. They don’t see us as capable. Like what you think of as capable is different than what I think of as capable. I am a capable human being and, I think a lot of people don’t see me as a whole human being. And they try to compromise for their shame and their discomfort with disabilities and how they’re afraid to be disabled and all the things they think about disability that’s ableist and they project that out into infantilization and dehumanization of people with disabilities because they’re uncomfortable with their own concept of disability. And it Makes me think of myself differently too because I start to internalize that. It’s a whole thing.
Amanda Antell: Yeah, and with autism, you get really two extremes with autism, I would say, at least in my experience. It’s like you have people who have this idea of what autism is or what media represents as autism as It’s like When they think of high functioning, they either think of something like Sheldon Cooper or Good Doctor, where you have these two really intelligent people who are really good at a subset of things, but they’re shit at socialization, and they don’t really have a lot of interest in close connections. And I’m like, that’s not what autism actually looks like, and that’s definitely not me. I identify probably the most with House from House MD, but I’m obviously not everything like him, and they’re obvious, and it’s just because I compare us, that doesn’t mean I want to be treated like House either. And other times, I get people who, I quite frankly think just don’t believe me. I’ve had professors last term who just did not want to believe I was disabled because I was too high functioning, and I was verbal, and I could actually file disability paperwork and I had to fight tooth and nail to get flexible attendance for a class I had to partially do down in Corvallis.
Indigo Russel: Yeah. Can I talk a little bit about people not believing me for a second?
Amanda Antell: Oh yeah, definitely.
Michelle Vinjamuri: You’re listening to Let’s Talk, Portland Community College’s disability awareness podcast.
Challenges with Medical Professionals
Indigo Russel: I went to the ER a couple of weeks ago I was having stroke-like symptoms. Which I think there’s, might be something neurologically going on with me, but I was stuttering, and I wasn’t able to get my words out and I couldn’t talk, and the walking got worse where I couldn’t get up and I couldn’t figure out how to move my body or how to move my legs. And so I went to the ER and this doctor after waiting six hours in the ER, this doctor, he tells me: you should stop using your wheelchair, cause if you’re going to commit to being in a wheelchair, you’re going to have to commit to being in a wheelchair for your life, because your muscles are going to get weaker and then you’ll have to rely on it more. And he basically told me that I don’t need my wheelchair, I shouldn’t be using my wheelchair. I think he was thinking that I was using my wheelchair for attention. And I think a lot of people do think that about me, people who don’t understand. I was trying to tell the doctor; I was like I don’t mind being in a wheelchair. It helps me. I want to use my wheelchair because it really improves my quality of life. And he wasn’t getting it. And he was like then you’re going to have to be in a wheelchair the rest of your life. And I’m like you think that’s a bad thing and you’re trying to get me to not use this tool that really helps me. And he was saying that I should and then he didn’t even run tests on me or try to figure out what was wrong with me. It was like, Oh just go home and you’re fine. I don’t see any stroke. I don’t think you’re having a stroke. And I don’t think anything’s really going on. And then he sent me home and I basically went to the ER for nothing. Nothing got figured out and that’s just how it usually goes.
Amanda Antell: Did he even do an MRI or a CT scan on you?
Indigo Russel: No.
Amanda Antell: Yeah, that’s, uh, yeah. I don’t know. I’m not really supposed to give advice on this thing, but I guess I’ll just say I’d consider reporting that, or complaining about that if you have the energy to. If they gave you discharge papers, you should have the doctor’s name. I don’t know, that’s just what I would do, because that’s pretty unprofessional in my opinion.
Indigo Russel: Oh, I never have the energy to report people. Or the motivation and the capacity.
Amanda Antell: It gives me a strong sense of satisfaction when I report them, even if nothing comes of it, at least there’s a paper trail, and I don’t know, it’s weird with me, but it’s kind of just sticking it to them.
Indigo Russel: That makes sense.
Amanda Antell: Like it, when I say file a report and complaints and stuff, half the time I don’t ,really, the majority of the time I expect them not to go anywhere but it’s just about establishing accountability and a paper trail and just a history with those professionals, if that makes sense, where Eventually, enough paperwork is going to be filed against them, and eventually they’re going to screw up badly enough, or they’re going to make a too-offensive of a comment, and they’ll probably get fired or potentially reprimanded, because they have all these past offenses on them. Where , if they have a history of bad behavior, nothing gets reported, they’ll probably not get any consequences at all, and I’m not saying you should report this doctor, and I’m not saying anyone who listens to this should report anyone if they’re not comfortable, but it’s just kind of something to keep in mind where sometimes the goal isn’t necessarily to hit the target, but it’s kind of a ricochet effect.
Indigo Russel: Yeah, I see the quality. In that I have reported other things. Oh, this one went unreported, but I had a EMT person when I collapsed in front of a CVS, and I couldn’t move my legs, and someone called 911. The EMT, when they came, They were like interrogating me, like, why can’t you use your legs? That doesn’t make any sense. Why haven’t you been diagnosed with anything? And then when they lift me up onto the gurney, she said, come on, don’t hurt these guys backs. And then when we got into the ambulance she said over her radio, we have a 21-year-old female who says she can’t walk. She’s able to but refuses to. She said that. And I, at the time I didn’t identify as female, and I kept correcting her on my pronouns. But anyways that was like really traumatizing for me. Because it was like one of the first times where that had happened to my legs, and I was freaking out and at the same time the professionals who were supposed to be helping me didn’t believe me and were being abusive towards me.
Amanda Antell: Yeah, that sucks. They probably made a lot of assumptions about you. They really shouldn’t have it, which is also very unprofessional of them. Yeah, the medical community, if you’re a part of the medical community and you’re listening to this, always listen to your patients. Don’t make assumptions like the crap that these people did. Everyone’s different. It doesn’t matter what it looks like to you. You’re not a doctor and you can’t diagnose anything. Treat the patient as, treat the patient with respect because they are terrified and having the worst day of their life when they call you.
Indigo Russel: Yeah, I think they get desensitized and overwhelmed and overworked so they’re less compassionate towards the people they’re trying to help because they’re, they, I guess there’s also a separation between us and them and they don’t really see that people are helping as human beings as much because they’re just so overwhelmed and overworked. And like I said, desensitized. I’ve had that happen to me when going to the hospital, there’s like a separation between patient and the people working there because. They’re so involved in what they’re doing that they end up traumatizing the people that they’re helping …or not helping… because they’re wearing the uniforms and, we’re wearing our clothes and it’s a dehumanizing experience that goes into that.
Amanda Antell: Yeah, I can definitely agree with that.
Final Thoughts and Messages
Amanda Antell: What do you want the wider population to know about what it’s like living with both invisible and visible disabilities?
Indigo Russel: First, for people who are living with invisible and visible disabilities, I want them to know that they’re not alone. And that there’s so many disabled people who are rooting for you. And who love you and accept you for who you are. And that, you’re not going to be alone in your struggle, even though you may feel like you’re alone in your struggle because maybe you don’t see other people like you very often, maybe cause you’re in your home a lot or things like that. There’s a lot of people going through so many similar things and we’re so strong and we’re so resilient and we’re not going to give up and we’re so powerful. We’re powerful people. And even though able bodied people may make us feel like we’re not powerful people sometimes. We’re very powerful and we can get through any obstacle and just remember to keep going and that you’re loved. And if anyone hasn’t told you this before recently, I’m rooting for you. And everyone else is rooting for you too,
Amanda Antell: What do you want the wider population to know about what it’s like to live with disabilities?
Indigo Russel: Able bodied people in general too. I would like them to know that we, or I should speak for myself. I am a human being and I suffer just like you and it’s important to be compassionate and to treat other people like human beings. And the struggles I’ve been through have only made me stronger and more loving. And I don’t want you to feel bad for me and I want you to embrace those aspects of myself that you find uncomfortable and to try to be patient and to be patient with us. And not in an advice-giving way just try to be compassionate. Anyways that’s all.
Amanda Antell: I thought that was a beautiful statement you made addressing the wider disabled community. And I actually thought that would have been a great closing statement, but I was referring just the wider able-bodied population. Because again, this conversation was centered around a lot of assumptions people make about how you live, how you struggle, how you cope with life without actually talking to you, so I wanted to make sure you address the able-bodied population with that question as well.
Indigo Russel: Yeah, I think what I said earlier about not pitying us and asking questions to us and not being afraid of offending us, things like that are important.
Amanda Antell: Yeah, and if I were to answer this question about having an invisible disability, I would say just don’t make assumptions about me just because I can have a conversation with you. That means nothing about my autism other than the fact that I’m verbal. You don’t know, I haven’t told you anything about what sounds I’m sensitive to, I haven’t told you about how I stem, I haven’t told you about my special interests, I haven’t told you anything about my coping mechanisms. Do not make assumptions on, about me based on what you’ve seen in media, based on what you’ve read on websites or studies. Talk to me as a human being. for listening.
Indigo Russel: Yes. Yes, I commend that. Yes.
Closing Remarks and Credits
Amanda Antell: Yeah, so we’re about at the end of our interview. Are there any final statements you would like to make to the audience before we go?
Indigo Russel: Yeah. I would just like to thank you, Amanda, and thank everyone who’s listening because I don’t get a chance to talk about these types of things very often. And it makes me feel very heard and seen. And I love that about this podcast that, it gives me, hope and also a sense of freedom to express myself. So, thank you.
Amanda Antell: Thank you Indigo for being willing to share your story and your experiences, and I really hope the audience got as much out of this conversation as I did.
Indigo Russel: Yeah, me too. Thank you, Amanda.
Amanda Antell: So, with that, that concludes today’s episode, and I hope you all join me next time. Thank you for listening to today’s Let’s Talk Autism episode. I hope you found it as thought provoking as I did, as I was not aware of the vast public perception of disability. When Indigo pointed out the prescribed behaviors of the general public, it made me realize that society tends to treat disabilities in two extremes. Either over accommodating to the point of infantilization, or not believing the person needs accommodations at all. Indigo showed tremendous strength by sharing their story, and I am very grateful that they were willing to answer my questions about disability and disability perception on this podcast. Remember that open communication is key to the disabled population being heard and ignoring us or talking over us denies us self-advocacy. Thank you for listening, and I hope you join us for the next episode.
Miri Newman: Today’s episode was made possible thanks to the hard work of Eugene Holden, our webmaster, Carrie Cantrell, our showrunner and lead producer, Amanda Antell, host and producer of Let’s Talk Autism, and Miri Newman, our production assistant. This episode featured audio and transcription editing by Carrie Cantrell, and music by Miri Newman.
Asher Sham: 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 forward slash DCA. This episode was produced by the Let’s Talk Podcast Collective as a collaborative effort between students, the Accessible Education and Disability Resource Department, and the PCC Multimedia Department. We air new episodes on our home website, our Spotify channel, X Ray 91 point 1 F-M and 107 point 1 F-M, and KBOO Radio 90 point 7 F-M.