In the fourth episode of season two of Disability Bandwidth, we had an insightful conversation with Grace Ogden-Parker, an enthusiastic advocate for both the Autistic and Disability communities who proudly identifies as a member of both groups. During our discussion, we explored her ongoing efforts to destigmatize autism and disability and her strategies for combating ableism in its various forms. Additionally, we delved into the incredible content creators who have inspired her and helped her develop a greater understanding of herself. You won’t want to miss this engaging conversation that covers a wide range of topics.

References:

 

Transcript

[00:00:00] (Music)

[00:00:05] Nikki Nolan: Welcome to season two at Disability Bandwidth!

[00:00:12] Sam Proulx: A show where we talk with experts in disability about their journey, life, and inspiration.

[00:00:16] Nikki Nolan: I’m Nikki Nolan.

[00:00:17] Sam Proulx: And I’m Sam Proulx.

[00:00:18] Let’s get started.

[00:00:19] Nikki Nolan: Would you mind introducing yourself?

[00:00:22] Grace Ogden-Parker: Hi, I am Grace Ogden Parker. Excuse the raspy voice. I’ve had a cough for like six weeks. It’s the worst. I am healthy though again, it’s just this cough won’t go away. And so my pronouns are she/her, although I am not against they/them if you use ’em, because I think that they are more inclusive of everyone.

[00:00:45] However, I do identify as female. So she/her is what I go by. I also would like to mention that I identify with identity first language when it comes to autism, and I can explain the difference later, but I just wanted to use that in conjunction with the pronouns because I will also explain later how I think that they are a lot like pronouns where you should respect the individual who you’re speaking about.

[00:01:11] And then to describe myself, I am a white female with brown hair. I always wear blue, so I have blue glasses. A blue shirt. Behind me is a blue wall. And if you ever see me out in the world, everything I will be wearing, driving, carrying will be blue unless I am carrying a child who’s wearing something else.

[00:01:34] Nikki Nolan: Interesting. Tell me a little bit more about the blue before we get into what you do.

[00:01:39] Grace Ogden-Parker: I’m obsessed. I’m obsessed with blue, and I have been for the majority of my life. I think when I was a little kid, I liked other colors, but there was a certain point and I can’t identify when I switched to blue. And I’ve been obsessed with blue and I like almost all shades of blue.

[00:01:53] Although I will oddly say I hate, hate, hate periwinkle blue, and I don’t really consider it a blue, but I love all blue other than periwinkle blue. And I think that I don’t wanna wear anything that’s not blue the majority of the time, unless it really goes with the blue that’s going with it. So, like right now I have black pants on which the show wouldn’t see even if I had my camera on, but that goes with my blue shirt and so forth.

[00:02:22] But I always have the blue glasses on. I used to have other glasses that were brown on the outside and blue on the inside. And people were like, why don’t you have blue glasses? I’m like, don’t you worry. I can see blue on the inside. I’m not even looking at you.

[00:02:34] Sam Proulx: So it seems like blue is a color you like rather than an image that you’re putting forward to other people. Because we’ve been having this conversation a little while about our needs and our wants and whether we’re reflecting to other people or whether it’s our own personal thing.

[00:02:50] But it sounds like blue’s your thing, which I assume that’s probably why no blue hair, right?

[00:02:55] Grace Ogden-Parker: Exactly. I don’t have blue hair. I never wanted to dye my hair blue. People ask me why I don’t, and I’m like, I just don’t want to. I don’t know why. Because you would think that as much as I love blue, I would want blue hair. And especially since I don’t have any restrictions on me by employers or society or anything like that at this stage in my life.

[00:03:17] You’d think that I’d want blue hair, but I still don’t want blue hair. I just don’t, maybe I just don’t want the hassle.

[00:03:23] Nikki Nolan: Yeah, hair stuff is just a hassle.

[00:03:25] Grace Ogden-Parker: It’s a lot of work to maintain that. My daughter wanted purple hair, so I took her and got her purple hair and it was a huge hassle to get it. And then it was a huge hassle taking care of it.

[00:03:35] And now it’s all gone and it’s just like, why would I do that? That’s me.

[00:03:40] Sam Proulx: Right. And I mean, I get it. As someone who’s blind, I really hate the smell of most hair products. Like I hate it. And I also really hate other people touching my hair. So the barber is an unpleasant experience for me. But I absolutely get not wanting to mess with your hair.

[00:03:56] Grace Ogden-Parker: Sensory issues too. Yes, I totally get that. I have dyed my hair before, but I usually dye really close to what my hair color is. If I want a different shade, same color, but I haven’t dyed it in years, I just don’t do that anymore.

[00:04:10] Nikki Nolan: Yeah. Yeah. I used to do that a lot too, but don’t anymore. So we just went on that fun tangent, but I would love to know like, what do you do? What is it, what would you describe what your work is?

[00:04:24] Grace Ogden-Parker: My real job, the one I get paid to do, I don’t really talk about it that much when I get into these things because it’s not really relevant to what I really am passionate about. It’s just a job. But I do own my own business, as a social media consultant for small local businesses.

[00:04:44] I get them out there on social media and give them the attention that they need for their business. I wouldn’t call myself a marketer, even though that’s kind of the category it falls into. It’s just I don’t feel like that fits me as a descriptor, but I guess it’s the category that it’s in.

[00:05:06] But let’s set that aside because I don’t really care about that in this context. What I’m really passionate about is, I’m an autistic advocate. A lot of us call ourselves self-advocates just to clarify that we are actually autistic. Not because we’re advocating specifically for ourselves, but just that we are actually autistic and we are advocating for autistics, but I’m also a disability advocate.

[00:05:33] And in that realm, I’m still learning, I’m still growing. I am trying to lean more into the ally side of that. I can’t really call myself an ally just because that’s not something you can self-identify as. But that’s the side of disability advocacy that I’m leaning into where I listen to the voices of experienced people and I let them be amplified.

[00:05:58] So if I see a post on social media that I think is very valuable, I’ll share it, but I probably won’t comment on my own post because I don’t have personal experience and I don’t wanna speak over anybody. And if I do comment, it’ll be something like, this is very valuable, or I learned a lot from this, or I think that you might enjoy this.

[00:06:22] Or, something simple like that. I’m not gonna give some kind of insight that I think I have when it’s not mine to talk about. But when it is about autistic people, I’ll probably write a ton about it unless I really feel like it was already fully covered by the person who was already talking about it.

[00:06:41] And so that’s a big part of what I do. I just recently left the Autistic Women’s Alliance. There’s no big horrible reason that I left. I just left because it was time for me to leave. We were on two different paths and I think that they fit better with some new blood. I think that I wanted to branch out into some other areas, but I still believe wholeheartedly in what they’re doing.

[00:07:10] And it’s amazing work. I think that as they grow, it’ll get better and better and better too. I jumped into a role that was way above my skill set. And we tried and we tried and it was just too high of a learning curve for me. And since the type of work that they wanted to do was a little bit different than the type of work I wanted to get into, it didn’t feel like I should continue trying to climb that steep hill when they could probably find people who were more passionate about their specific goals.

[00:07:53] Sam Proulx: Yeah. And sometimes a change is better than rest, right? When you’ve been with an organization or a community for a long time, sometimes it is time to seek out new pastures just to revitalize your own energy in doing something different. But it is also really interesting the way you talked about being an autistic person identifying as having autism and the way you talked about the disability community and being an ally, because there’s an interesting differentiation there.

[00:08:19] I think too often in the disability community, we tend to take our own disability and try to apply our lived experience to everyone. It’s a tendency that I had to grow within it, and grow up as I started my own work. But it sounded almost like you maybe don’t identify yourself as a person with a disability or perhaps don’t consider autism to be a disability.

[00:08:46] Grace Ogden-Parker: Oh, no, no, no. The exact opposite. What I actually meant, and I think I wasn’t clear about that, is that while I am autistic and that is a disability, I don’t identify as, say, blind or deaf or having a limb difference or a variety of other disabilities that are out there. And because I neither have lived experience with those, nor an overly in depth understanding.

[00:09:21] Know what I mean? I feel like it should come from people who have lived experience. And so with that, I want to amplify their voices versus my own. But if we’re talking about the subsection of disability that is autistic, I will talk at length about that. Because not only am I autistic and I have my own experiences, but I’ve been part of the online autistic community for years. Oh my goodness. Like a decade, probably, actually more than a decade. I have listened to other voices. I have listened to non-speaking voices. I have listened to all the different voices that I have come across. And so I can briefly speak about other experiences to a small degree and then point you in the right direction, you know what I mean?

[00:10:14] And so for me, I feel that we can only speak for ourselves when it comes to being real clear on topics. And then we really need to amplify the voices of others when it comes to their experiences and their issues and rights because it’s important to amplify the voices of the people who actually live those experiences.

[00:10:39] Sam Proulx: Yeah. And I mean, that’s kind of the ethos between the entire Disability Bandwidth podcast because between me and Nikki identifies as someone with autism, and I am completely blind, right? So we have that lived experience within ourselves, but the most important thing that we can do is give our voices to a wider group of people.

[00:11:03] And I mean, speaking of those voices and that discourse perhaps that I’m less familiar with and Nikki, you’re probably more familiar with it than I am even. But the reason I ask that question is because I do sometimes see a movement in the artistic community to sort of reclass autism as not being a disability, which is interesting and not something that I have lived experience.

[00:11:26] Because like I can’t just decide that, well, blindness isn’t a disability like it’s a thing. You know what I mean? I don’t get to like what is visually diverse, what would that even mean in my case?

[00:11:41] Whereas you can use words like neurodiverse and things. So, yeah, it’s interesting to me that you’re very clear that autism is a disability and that you’re very fine with that identity first language and with embracing that identity. What was the journey like for you getting there?

[00:12:05] Grace Ogden-Parker: Well, I’m not gonna go into my journey just yet because that can go on the longest tangent ever separate from what your real question was. I do identify as disabled or part of the disability community, and I believe wholeheartedly that that is not a bad thing, that that is just as valid as all other identities out there.

[00:12:29] I feel that autistic is a valid identity. I feel that disabled is a valid identity, and I think that the movements that are reclaiming those and destigmatizing those are where I feel most identified with is reclaiming them, destigmatizing them, pointing out that, claiming that this is a bad thing is proving that society’s what’s disabling us.

[00:12:56] And so I wanna talk a little bit about what you were saying about the autistic community kind of pulling away from disability. But I, but first I wanna ask Nikki real quick because like I said, I want identity first versus person first to be individually chosen just like pronouns.

[00:13:16] I wanna ask Nikki, how do you identify your autistic ways?

[00:13:20] Nikki Nolan: I am autistic. I don’t have autism, I believe, it’s a part of me. It’s not interchangeable. It’s not like a thing that’s attached to me. It is my whole being, I can’t not be autistic. So I consider myself, I’m not a person with autism. I’m an autistic person.

[00:13:42] Grace Ogden-Parker: You are in the majority. I read a study recently. I don’t want to separate people into majority and minority, but I do wanna talk about for half a second about this research that I looked at recently. It’s very recent research. So it’s not old, it’s not outdated, it’s not clumsy. They put in a lot of effort.

[00:14:08] They did the real research methods and they found that over 80%, I think it was 86%. But I don’t wanna misquote it since I don’t have it in front of me. But over 80% of autistic people who were interviewed prefer identity first language. So that being said, while I say identity versus person first language should be like pronouns.

[00:14:32] You wanna talk to the person who you’re talking about or with. What they prefer and use that. But if you were talking about the overall group, you should go with identity first because that is what over 80% of autistics prefer. And it is also what the movement is trying to portray because we want to destigmatize the term and the whole concept. There’s so much misinformation out there.

[00:15:00] Sam Proulx: I’m really enjoying this conversation on the Disability Bandwidth Podcast, but right now it’s time for a break for a word from our sponsor.

[00:15:06] Jack: Hello, my name is Jack. I am a full-time screen reader user. I’m a member of Fable’s Community of Accessibility testers. If you’re listening to this podcast, you already know just how important it is to integrate the voices of people with disabilities into every aspect of your product development journey.

[00:15:25] Fable can help you do that from improving your team’s accessibility training through Fable Upskill, to working directly with assistive technology users. With Fable Engage, we can help you take the next step in building amazing websites and apps that are accessible and easy for everyone to use. To learn more, check out what we do at www.makeitfable.com and follow us on LinkedIn and Twitter.

[00:15:52] Sam Proulx: And we’re back. Let’s dive right in.

[00:15:54] Nikki Nolan: I wanna get one thing from you. I wanna know, just for people who might not understand what identity first is versus person first, can you just tease that out a tiny bit for people so that they understand if I was to identify as a person first versus identity first, can you show me what that is and explain it a little?

[00:16:12] Grace Ogden-Parker: Absolutely. As basic as I can describe it, identity first is autistic person putting the autistic before the person because we identify with our autistic identity as being integral to who we are. Person first is a person with autism. That’s putting the person before the disability. And some people have identified with that, or people outside the community sometimes use that because they want to respect personhood and not label someone by their disability.

[00:17:00] And I can understand that side of it because there are large portions of the disability community that prefer that for their disabilities. However, autistic people are currently pushing for people to understand that this is not a disorder. And then this is going back to your question, Sam. So I don’t know how many people really are trying to get away from saying it’s a disability.

[00:17:34] I don’t wanna speak for those people because I really don’t actually see their perspective, in my own head all that well. But what I do say is that there is kind of a nuance that is a little bit hard to parse out if you’re not diving deep into it. So I’m gonna dive deep into it. What is going on is that we are trying to explain it is a disability, but it’s not a disorder.

[00:18:00] So we are not disordered by nature, autistic neurotypes are natural. They’re not caused by anything. They are passed down from family member to family member. It is integral to who we are. It is not a separate thing that happened to us somewhere in our lives. I’m not even gonna get into the vaccine argument, but I’m gonna tell you right now, they did not cause my autism. It’s not a thing…

[00:18:30] Please don’t ever, ever, ever stop having vaccines because people need them. Okay? So end of that, sorry there. Because autism is not something that happened to us. We feel that we are healthy, whole human beings that are not disordered, what we are saying is that we are not disabled by our autism.

[00:18:57] We are disabled by society’s ableism. And that is true for a lot of disabilities. And that is the social model. And the social model is a lot harder to explain. Jeremy Andrew Davis has one of the best videos for this. It’s so amazing and I can’t do it justice, but I’m gonna give a little bit of a description of what the concept is.

[00:19:18] So say you live in a world where everyone is Superman, except for the small 20% of people who are people. Okay. So the world is built for Superman people. Which means that they don’t need cars or trains or buses or, or any kind of transportation because they can fly. They don’t need stairs or ramps or anything like that because they can just leap.

[00:19:49] They don’t need any of those types of things. And this is part of his thing, so I want to give credit to him. This is not my idea. I’m not doing it justice either. I’m just summarizing. So the idea is that the average human beings, who by the way in this situation would be anybody who doesn’t at all have what we would consider disabilities in our current world, are just the average human beings with no impairments or disabilities or differences of any kind.

[00:20:19] They’re the neuro majority type of people, but in this case, they’re considered disabled by society. So they can’t get anywhere on time because there’s no way to get there unless they hop a ride on Superman’s back and then they might get liquified in the process. And that was brought up in his analogy, but I’m not doing it justice once again.

[00:20:43] So essentially, they get told over and over again that they’re difficult to work with, we can’t accommodate you, or when they’re asking for things that are basic needs for them to be able to live in society and participate, they’re being told that that is extra, that is special, that is different, that is not what everyone else needs.

[00:21:10] And that’s my total destruction of his, beautiful, beautiful analogy.

[00:21:17] Sam Proulx: If you’re able to do so, you could also send us a link both to the study you referenced and to that video, and we can make sure and get it in the show notes,

[00:21:26] Grace Ogden-Parker: Absolutely. I have those available. Absolutely. I can send those to you.

[00:21:31] Sam Proulx: For those who are interested.

[00:21:32] Grace Ogden-Parker: And he is amazing. You should watch all of his videos. They’re humorous, so you’ll enjoy them no matter whether you’re autistic or not. But they’re also really great for the whole disability community as well. So I think that he’s a great example of how to describe things. He’s very good at that.

[00:21:54] Sam Proulx: Yeah. That whole concept applies pretty universally. I mean to be fair to the folks that I interact with on social media, social media is not a great way to find and get context. so it could very well be that they were just saying that, and I didn’t read that because you only have 200 characters in a tweet. You can only go so far.

[00:22:16] Just to be fair there, but I mean, it sounds like sort of a thought experiment that I often run sometimes, which is that, if suddenly you were the only person in the world who could see, you would be the one who was disabled because we wouldn’t bother installing lights in the office.

[00:22:32] Or if we did install them, they’d be broken or not on 50% of the time. Right?

[00:22:36] Grace Ogden-Parker: Absolutely. Absolutely.

[00:22:38] Sam Proulx: Yeah.

[00:22:38] Grace Ogden-Parker: Yes. I completely agree with that. That is roughly the same thing, and much better than the way I described it . But the point is that our differences aren’t actually disabling us. It’s the way society disables us by not being inclusive, by not accommodating everyone in the world as opposed to just the neuro majority. And I call them the neuro majority. I don’t call autistic people neuro minority because I feel like that’s kind of appropriating a little bit even though it’s not, but it is. So I call us the neuro-marginalized,

[00:23:19] Sam Proulx: Mm-hmm.

[00:23:20] Grace Ogden-Parker: I know a lot of people call us neurodivergent and I’m okay with that too, but some people are not comfortable with that.

[00:23:25] So there’s a lot of different ways we say it. But I do call us the neuro-marginalized because we are. I would say that we are super marginalized in being autistic. We are pushed out to the margins because people are uncomfortable with the way that we are. And if we are to be accepted in, they want us to assimilate.

[00:23:50] Sam Proulx: I think the thing that maybe changes the tone of the discussion or makes the discussion somewhat different is that there are some real advantages to being an autistic person, to having that way of thinking, right? In some ways, it’s harder to argue that there are advantages to be blind or to being a deaf. Know what I mean?

[00:24:11] So I think that may also probably have an impact on the conversation. Nikki, you wanna jump in?

[00:24:15] Nikki Nolan: I don’t know how to phrase this, but when you and I are having this conversation, I am able to send you a text message and say, hey, let’s move to this, and no one else can hear it, but me and you.

[00:24:27] Sam Proulx: Right. But that’s something that anybody who wanted to could close their eyes and learn to do that.

[00:24:33] Nikki Nolan: True, true.

[00:24:34] Sam Proulx: But I couldn’t just take a course next week to learn to think like someone who’s autistic, right? At least I don’t think so.

[00:24:43] I think that would probably be quite offensive if that was a thing that was offered. I don’t think that’s a thing.

[00:24:48] Grace Ogden-Parker: I dunno if it would be offensive. Do you think it would be offensive, Nikki? I think it would be awesome if people tried to think like us.

[00:24:56] Nikki Nolan: Yeah, actually, you’re right. I did a talk with Fable and was specifically centering it around the fact that so many people who are neurotypical don’t try to find out how to communicate with us.

[00:25:10] But we have to do all of that labor to fit into this neurotypical thing with masking and all these things. And so I do think that it would be nice if there was some kind of course like working to communicate differently or thinking differently.

[00:25:30] That’s a very interesting question that I feel like I’m gonna have to think on for a while.

[00:25:35] Grace Ogden-Parker: I agree. I think that I would get totally off the rails if I started talking about the double empathy theory by Damian Milton. So what I’m gonna do is I’m gonna bring it up and I’m gonna send you guys the link, Damian Milton.

[00:25:52] He created the theory and he talks quite a lot about it. So what I’m actually gonna send you is, oddly enough, a link to a podcast that has its full transcript and he speaks with someone specifically about the concept of double empathy. And just real briefly, because it’s mean of me to bring it up and not say anything about it, simply put, it’s a lot like what you were talking about, Nikki.

[00:26:18] It’s where communication is not a deficiency that we have, that we need to work on. It is simply a communication barrier between two different neurotypes. So it’s kind of like a communication barrier between people who speak two different languages. Both sides need to kind of meet halfway in the middle as opposed to one side doing all the work to learn the other side.

[00:26:47] That’s the gist of it. It’s so much deeper than that, but that’s all I’m gonna say about it right now. I’ll send you guys a link to that too. That one’s an amazing description of it and it goes in depth. It’s really great.

[00:26:59] Sam Proulx: I love everyone in this podcast who has been so keen to share resources, whenever we ask folks things. So, the show notes of these podcasts are always a rich mine of things to look up. And I think that kind of leads us really well into the next question that we like to ask folks.

[00:27:19] Which is, what are the key moments that led you here? Because you seem like you’ve thought really hard about these things and are very confident in your identity and your self perception and your needs and your advocacy work around autism. So what are some of those key moments?

[00:27:37] People, ideas, music, books, that brought you to where you are today?

[00:27:41] Grace Ogden-Parker: Well, this one might take us to the rest of our time. So, my biggest key moment was my “aha”, which was the very beginning of me realizing that I was autistic. I was not recognized as a kid or throughout my life as being autistic. And that is very common for anyone who doesn’t identify as cis male, or even white cis male for that matter.

[00:28:07] Because that is what was studied in the beginning and that is what they stuck to for the longest time. And there are still professionals who think it, and still a ton of society who thinks it. But a lot of study started going into females and other marginalized genders, and then it started to kind of spread into, well, we have other intersectionalities as well.

[00:28:35] So there are a lot of missed autistic people who are now discovering it in adulthood, and then there are some who are still not going to ever discover it because they haven’t been introduced. So anyway, I could go on and on and on on that one too. Let’s go back to my “aha” moment. So oddly enough, my “aha” moment came from some random non-autistic friend of mine.

[00:29:05] I was explaining to them how my brain works and how I don’t actually think in words. I don’t, however, think primarily in images either, which is how Temple Grandin kind of taught the world that we think. The thing is, I think in something that is not really possible to explain. I don’t know how to explain it at all.

[00:29:34] I wanted to explain it in the beginning, before I really started to delve into this. Kind of like a little bit of code, a little bit of symbols, a little bit of images, but the reality is, it’s none of those things either. For me, there is no language for what my mental language is. I don’t know if it’s like a concept or whatever, but there is no word for it. I don’t know if anybody else thinks the way that I do, even within autistic communities, but essentially what happens is that I have to translate into language what I’m thinking and vice versa.

[00:30:21] When people are talking to me, I have to translate it back into my understanding, and so my processing is slower. One of my biggest frustrations with that is the human verbal language, I don’t think it has enough words in it to cover everything that we think. At least not everything that I think. And I think that the words are not adequate.

[00:30:47] Sometimes the words are adequate, but sometimes I feel like I really want to express something exactly how I’m thinking and feeling it, because it’s important to me. And there isn’t a word or phrase or whatever that will actually adequately translate what I’m thinking. And it pains me because as an autistic person. I want to be thorough and clear and descriptive, and I want people to understand me exactly as I mean it.

[00:31:19] And it’s very, very, very hard for me to settle for sort of okay translations. And so, I very rarely explained this to this person, probably just said, I don’t think in words. I think in pictures and, and code and they said, that sounds like autistic people. And boom, that was my, that was my “aha”.

[00:31:52] And being autistic, what did I do? I hit the library, which was my favorite place on the face of the planet and still is. I just want you to know, my favorite place on the face of the planet is the library. I hit the library and I read everything I could. Guess what, everything in the library was crap.

[00:32:10] And I said crap because it was all like old and written by the wrong people and misinformation and all of that. However, it gave me little tiny bits and pieces and I started to build from there. And I started to look online and I started to find autistic people and an autistic community. And I grew from there.

[00:32:33] And some of the best YouTube channels and people to follow that I started with were Neurodivergent Rebels. She, she/they…

[00:32:45] Nikki Nolan: Love. Love that person. Love that person so much.

[00:32:48] Grace Ogden-Parker: Gosh, they have changed their name from what I originally knew their name to be. But Neurodivergent Rebel is still Neurodivergent Rebel, that’s still out there like that.

[00:33:00] So you can find Neurodivergent Rebel all over the place. I don’t think I even need to send a link to that. That one is super easy. You just pop it in and you’ll find Neurodivergent Rebel. They’re amazing. Neurodivergent Rebel and people like Ella Tab, which I’m trying to remember what her handle was on YouTube, Purple Ella.

[00:33:23] That’s it. Purple Ella. And, Agony Autie. That’s A U T I E, Autie, a, kinda like Auntie without an n. Oh, Amythest, who, Amythest Schaeber’s who did a whole YouTube series called ask an Autistic. So those people were so much more integral to my understanding of myself and of autism than the books that I read back then, because those books were, like I said, crap, sorry.

[00:33:59] But they were.

[00:33:59] But, they still help me kind of feel, okay, this is me. So at least they have enough of the basics to still feel right. Know what I mean? They still felt right. So the understanding is not perfect from those old sources, but at least they had some of it built in. Some of it was there.

[00:34:22] And I took all these online tests, and they have better online tests now than they used to. So much better. I will find, again, the link to the best set of online tests for self-identifying. I say self-identifying because you can’t actually get a formal diagnosis from these, sorry guys. But they’re actually better than the real tests that you get for formal diagnosis.

[00:34:51] I started my whole process by listening and reading and watching and paying attention. And then it took me a while to start speaking and sharing my peace. Because you have to feel confident that it fits you and that others are going to accept you into the community.

[00:35:12] Not that they’re not accepting, but for you to feel that way inside of yourself. Because you know what? Being autistic, we weren’t accepted by our peers are non-autistic peers. We found ourselves as outsiders. Even if we had friends, we still felt like outsiders. And so to join a new community that feels like home, you feel cautious joining it just because you don’t want to be rejected by this new home, by this new community.

[00:35:41] And I wasn’t. And I was definitely not rejected. I was so happy to find this community.

[00:35:48] Sam Proulx: Oh my goodness. There’s so many things in that experience that I want to dive into and some of them are probably just my own things. It’s just fascinating to me with the internet and things now, the way that we kind of curate our own communities and run in our own circles, right?

[00:36:06] Like I hear about, and of course it’s true, the underdiagnosis of autism and folks who identify as female, and yet just because of the circle that I run in, I can’t name a single male autistic person. They’re all female. Anyway, it probably just says more about the people that I hang out with and the circles I run in than it does about the actual state of reality.

[00:36:28] But I just wanted to throw that up there because sometimes that can be important to remember. That is, our experiences today can be so different from other people’s experiences and so different from what the reality is. The second thing that was really fascinating to me was kind of your experience with language, because I often feel the frustration of there being too many words because as someone who does think in language, I’ll often have the exact word that expresses the thing. but I’m like, yeah, that’s in the OED and has been used like 50 times in print.

[00:36:59] Nobody’s gonna know this word. So I, why even bother using it? It’s kind of my own struggle. It also just made me think about how much of the research that has been conducted into linguistics has had the effect of discriminating against people with autism. So I’m thinking of this sapir-whorf hypothesis, right?

[00:37:23] That really states that the only way to think is language. When I first encountered that research, it was pretty obvious to me that it seemed true, because that’s how I think, right? So it just makes me wonder, how do we get beyond that? I think today we all know that we should be inclusive and diverse, but I think in the realms of AI and natural language processing and linguistics and all of these things, we are still doing things in ways that discriminate against autistic folks.

[00:38:06] Nobody’s having that conversation because they haven’t connected all of those issues together. I wonder if you have any thoughts on things like, how do we move beyond thinking about inclusion from a diversity and equity perspective and towards thinking about the way that these broader things that we do tend to be discriminatory even though we haven’t yet connected them up to disability experience.

[00:38:33] Grace Ogden-Parker: A big problem with language for me isn’t words per se. It’s actually, it’s how people use them. And not exactly in how you were describing, but more in the realm of being indirect and expecting people to infer things.

[00:38:58] Inferring is the worst. Inferring is the worst because we can’t, I’m not saying we can’t at all, but I’m saying that in general, we don’t know how to, we don’t know when to, we don’t know why to infer things.

[00:39:12] We just want you to be direct. Just be direct. Stop beating around the bush. Stop saying something that means something else. And I’m not talking about you. I just mean people in general. They don’t speak directly enough. They think that the proper way to talk to each other is indirectly. And, we think that the proper way to talk to each other is directly.

[00:39:34] And so we are found as offensive and we find everyone else to be elusive. It’s not just confusing. It’s just missing. It’s missing. There’s something missing there. I want all the information in the world, and it’s not because I wanna be a know-it-all, it’s because I want to understand it all.

[00:39:59] What do I mean? There’s a difference between it being a know-it-all and understanding it all. Being a know-it-all would be me telling you everything in the world and I know it all, blah, blah, blah, blah. You don’t know anything. I know all of these things. No, but wanting to understand it all is me going, okay, tell me everything.

[00:40:17] That’s where my curiosity grows and grows and grows and grows and grows. And I wanna know all the things. We even get considered rude for asking questions. Too many questions, whether it be in the workplace. And we’re considered questioning authority because we wanna understand things, even though all we’re trying to do is understand it.

[00:40:41] All we’re trying to do is understand it. We’re not saying you’re wrong, we’re saying tell me more. And in personal lives, people think we’re too intrusive. Because we ask more questions and they don’t wanna answer them. And I get it. There are things I wanna keep to myself. I am perfectly fine with privacy.

[00:41:02] I get that. But at the same time, like if we’re gonna talk about a topic, I want all your pieces of that topic, everything that then your head needs to come out. Cause I wanna hear it. And and people don’t do that.

[00:41:15] Sam Proulx: No, or they do it in, I don’t wanna say insincere ways because I think that’s too strong, but I was just having a frustrated conversation with a friend the other day on how there is too much useless communication in society. The example that I would give is when the cashier at the grocery store asks, how are you? The only acceptable answer to that question is, I’m fine, thanks.

[00:41:43] Nikki Nolan: Oh, no. But not for me. For me, I’m just like, oh, you’re really curious about how I am here. I’m gonna tell you everything.

[00:41:49] Grace Ogden-Parker: What Nikki? I’m like that too. I’m like that too. And that is so autistic to always give the honest answer. And that we have to learn not to always do that because people don’t actually want the honest answer.

[00:42:04] Nikki Nolan: Yeah.

[00:42:05] Sam Proulx: Right. But it’s just that frustration of like, why do people even say it? I’ve really got to thinking recently how many totally ritualistic exchanges I have with people on a daily basis where it’s that how are you, I’m fine. Sometimes it feels like we do that 20, 30, 40 times a day.

[00:42:26] Just different things where you ask the right question and get the right answer and nothing is communicated. I dunno. This is a tangent and we should pull back.

[00:42:35] Nikki Nolan: Let’s take a step back. What are some small ways people can start on this path towards inclusion access and furthering the rights of people with disabilities?

[00:42:44] Grace Ogden-Parker: So the best small way that has, in my opinion, the biggest impact, the best small way to take a step towards improving this is to listen to autistic voices. And I don’t mean out loud voices either. You can get a lot more from the non-speaking autistic community as well. I’m learning so much from them, I love them.

[00:43:12] Communication First. That is one of the resources I’m gonna share with you. Communication First is one of the best organizations out there working for non-speaking people. All types of non-speaking disabilities, not just autistic, but they do include autistic within their umbrella of non-speaking people.

[00:43:35] And they actually prefer terms like, person who relies on AAC, which is, I wanna say augmented alternative or alternative augmented communication. I always get those two swapped. I can’t remember which order they go in, but AAC to be understood. And the reason why they prefer that, non-autistic people, is because it balances the onus on both sides for the communication.

[00:44:05] And I love that. I love that. I think that the autistic community who use non-speaking should switch to that because it really is a two-way street. So there’s that. Communication First. They’re amazing. They have non-speaking autistics who work with them and write for them and go out and advocate with them.

[00:44:32] So listen to those people. And there’s a video, an amazing video that you should watch called Listen. It’s by them. You can either find it on YouTube or on their website. It’s a great introduction to that concept. The people that I mentioned that were really integral to my beginning of understanding myself, I’ll send you their links because they are good voices to start with, to understand.

[00:44:59] I think that listening is step one. It’s the easiest step and it’s the best step to take. Because if you listen to actual autistic people versus the groups that speak over us instead of letting us speak, I think that that’s the most important thing because that’s where all the real truths are. And, there’s a lot of misinformation out there. So you need to get the truth from us.

[00:45:21] And then step two is, instead of speaking for us, when you want to advocate, amplify our voices instead. Don’t take your understanding and disseminate that. Go ahead and say, hey, this is a resource. This person is amazing. This person’s saying what I want to say about the autistic experience and they know more than I do.

[00:45:50] Do that. And then the next step is to include us. Find ways that you can meet us halfway in communication. Find ways that you can encourage others to understand and listen and meet us halfway. Find ways that you can support the groups that are autistic led versus the groups that are bigger and louder.

[00:46:22] And honestly, I would ask people if they’re on that journey and they’ve gone through those simple steps. I would ask them to really push legislation to listen to us instead of to the big, loud groups, because they are heavily connected to. The big, loud groups with money, and they’re the wrong groups and they’re hearing the wrong story.

[00:46:49] And I don’t fault them for that because I don’t think they’re intentionally harming us in that way. But it doesn’t do the right work to say, well, I didn’t mean to. You have to actively mean to do the right thing. And I tell my kids this when they’re like, well, I didn’t mean to do the wrong thing.

[00:47:10] Okay? But what you need to do to do the right thing is to intentionally choose the right path. Intentionally go forth with good intentions, with the right direction, listen to what we’re saying and take that to heart. Make the right efforts. And I think that’s where people will do better.

[00:47:33] If they get out of their own head and stop thinking that they need to defend their mistakes. Instead, let that go. I’m gonna let that go. I’m gonna let the mistakes go as long as you’re trying to move forward with the right direction, so let your own mistakes go. Don’t harbor all of that guilt inside of you that makes you feel like you have to defend yourself.

[00:48:00] Just realize that that was the wrong path, and find the right path and intentionally move forward with the right path and make that your new way of doing things.

[00:48:13] Sam Proulx: It’s so important to highlight too, you said, meeting people in the middle. And I think when people hear that, they resist it because they somehow believe that meeting people in the middle means doing things that are harder than what you’re doing now.

[00:48:30] And sometimes, but at least in my own experience, it often just means doing things that are different from the way you’re doing them now. And we need to break this connection that people have that oh, we’ll do things differently, means it will be harder. No, it just means it’ll be different.

[00:48:48] Grace Ogden-Parker: From what you just said, I thought of the perfect analogy for it. So meeting in the middle, you think it’s like climbing uphill. But it’s like instead of continuing on this tug of war where you’re trying to drag me in your direction, which is just as hard for you as it is for me. If you’re gonna keep trying to drag me, isn’t it?

[00:49:12] Let go of the rope and let’s just walk towards each other. You know what I mean? That’s so much simpler than tug of war, isn’t it?

[00:49:21] Sam Proulx: Yeah. And it’s also always easier to change yourself than it is to change someone else, right?

[00:49:27] Grace Ogden-Parker: It is impossible to change someone else. You shouldn’t try to, I don’t think anyone should try to change people.

[00:49:34] Nikki Nolan: I mean, I think that the real root of the thing is a lot of these big things, they’re trying to change people instead of accepting people. And with that thought, we have come to the end.

[00:49:45] Sam Proulx: And so as we close off, if folks want to keep up with you and follow what you are doing and the advocacy that you’re doing and the voices that you’re amplifying, where can they find you? I know you don’t have a book to promote yet, but do you have anything else that you want to share?

[00:50:00] Grace Ogden-Parker: But honestly, once I do [have a book], they’ll be able to find it the same place that I’m gonna have them find me now, which is LinkedIn. So, unless LinkedIn pulls a Twitter, you could find me at LinkedIn. I left Twitter, I left it. Not going back. Never going back. Not even gonna go into it. Well, I would, but we don’t have time.

[00:50:17] Sam Proulx: I hear you. Yes. We could talk about that all day.

[00:50:20] Grace Ogden-Parker: You can no longer find me on Twitter. Don’t even try. I’m on Facebook, but you can just ignore that. I don’t care about Facebook. I’m on a lot of different social media. I do that for a living, I still do them, but I got sick of some of them.

[00:50:37] I’m a little intimidated by TikTok, so I’m not really all on TikTok, but I wanna be more on TikTok. I am on YouTube. I have like two or three or four videos. There’s not much, but they’re really basic. So they should be easy for everyone. So I have a YouTube channel, I have LinkedIn. I have a, do you guys know what RedBubble is?

[00:51:05] It’s a shop.

[00:51:09] Grace Ogden-Parker: It’s an online shop. It’s called RedBubble. And I’ll give you the link to my shop as well. You don’t have to shop there, but if you like any of what I have and you don’t feel like purchasing at the time.

[00:51:29] It has an algorithm so people are gonna see stuff based on how many people like it. So if you wanna go there, go and like it. I have both advocacy stuff as well as just some pretty pictures I took and amplified the colors on, while I was traveling. So you can get all kinds of fun stuff there as well.

[00:51:50] I’m always on LinkedIn. If I’m not there for a few minutes, it’s spent with my family.

[00:51:55] Sam Proulx: Yeah. Yeah. Right. And it’s sending you nine notifications to bring you back. Anyway, there’s a whole other conversation to be had about algorithmic networks. But we won’t get into that today, but I’m sure we’ll be having you back on again. And thanks so much, for joining us today, for taking the time, and for having a really open and, and thorough conversation, and, and providing folks with more resources, who would like to dive deeper in.

[00:52:21] Nikki Nolan: Thank you so much.

[00:52:22] Grace Ogden-Parker: Thank you guys. You guys are amazing and I love what you’re doing and I loved this whole entire thing.

[00:52:28] Nikki Nolan: Thanks for listening to Disability Bandwidth. If you liked this episode of Disability Bandwidth, please subscribe and share it with friends and family. Today’s episode was hosted by Sam Proulx and Nikki Nolan. Edited and produced by Nikki Nolan. Transcripts are written by Emma Klauber. Music is created by Efe Akeman.

[00:43:25] Special thanks to everyone at Fable who without their support, this show would not be possible. You can find out more about Disability Bandwidth on Twitter and Instagram @disabilitybandwidth, or on our website at www.disabilitybandwidth.com.

[00:53:04] Music

Podcast: Play in new window | Download

Comments are closed.