Interview between Speaker 1 (Meg) and Speaker 2 (ChrisTiana ObeySumner)
Episode 77 – How Therapists Can Move from Allies to Accomplices
[Introductory note]
Hey, it’s Meg. I know that if you are a professional and you’re here, it’s because you want to work in a way that has a deeply positive impact on the self-identity and well-being of your Autistic clients. And at Learn, Play, Thrive, we really want to support you on that journey, because the way we do our work impacts kids, families, communities. It really matters. And it is so hard to swim against the current on your own. That’s why we’ve put together another huge Continuing Education Summit. This one is for OT’s, SLP’s, and social workers. It features so many of your favorite podcast guests. The Neurodiversity Continuing Education Summit is designed to give you the tools and confidence to go so much deeper into your work with a neurodiversity-affirming lens. We want you to leave this Summit just buzzing with confidence and enthusiasm, and feeling connected to a community of like-minded therapists. We have a truly engaging and brilliant panel of neurodiverse professionals teaching on disability justice, AAC, interoception, sensory processing, delayed echolalia, neurodiversity-affirming feeding practices, pathological demand avoidance, diversity, equity, and inclusion (DE&I), literacy, and so much more. We’ve just launched early bird pricing for this Summit which is going to be a pick-and-choose on-demand Summit in January of 2024. There are a limited number of early bird spots available, so head over right now to learnplaythrive.com/summit and be a part of this huge culture change in the therapy world. And then, tell all of your friends. We’re giving $500, as we do every year, to the therapist who refers the most people because we want to make the biggest impact we can with this event. It’ll be registered for AOTA and ASHA CEU’s; we’re applying for ASWB CEU’s. So, grab your spot. Get all the details at learnplaythrive.com/summit.
[Introductory music]
Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify Autistic voices, and change the way we think about autism in life, and in our professional therapy practices. I’m Meg Proctor from learnplaythrive.com.
Meg:
Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say, ‘Autistic person,’ rather than, ‘person with autism’. What we’re hearing from the majority of Autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘Autistic’ to help reduce the stigma.
Welcome to Episode 77 With ChrisTiana ObeySumner. I will tell you upfront, if you like metaphors, ChrisTiana has the best metaphors in this episode to help us understand intersectionality and so many other things. I was completely wrapped for this entire conversation. There are parables, and metaphors, examples, visuals, and a great deal of kindness and gentleness around some really tough topics. ChrisTiana asks us to examine our own shadows and biases, and how they show up in the world and in our work as therapists. And they give us concrete ways our work can be more empowering to our clients and all of their identities. And we also talk about the Barbie movie, especially stereotypical Barbie. ChrisTiana talks about social pressure, the downhill impact of unintentional biases — you’ll have to listen to them explain it. Tiny warning here that there may be some small spoilers for the movie plot if you feel like you want to be careful about Barbie movie spoilers.
I’ll tell you about ChrisTiana. They run a diversity, equity, and inclusion consulting business called Epiphanies of Equity, which we talk about briefly during our conversation. I want to read to you how ChrisTiana describes themselves in their bio: “For those who are still dipping their toes into the world of equity and anti-racism work, I specialize in using elements of counseling and social psychology to help ‘well-intentioned’ become ‘well-aware’. Everyone has to start somewhere, and some get lost or confused along the way. Let me help you achieve your social equity goals with loving kindness, empathetic directness, gracious space.” So, this is just so incredibly aligned with what I experienced in tackling these really complex topics with ChrisTiana, and I’m so excited to share this interview with you. Here’s the interview with ChrisTiana ObeySumner.
Hi, ChrisTiana. Welcome to the podcast.
ChrisTiana:
Thank you for having me.
Meg:
I’m excited to be sitting down and talking with you. And I want to start with talking about your work at Epiphanies of Equity. Can you share with us what you do and how it came to be after so many years of doing disability justice work?
ChrisTiana:
Yeah. Epiphanies of Equity is a social equity consulting — we not only take consulting, but we also do research, policy analysis, especially around social psychology, social policy, and organizational psychology. So, what that means, and how I usually break it down, how do we get to be an equitable society with each other, or when humans are humaning with other humans, then why do certain human things happen? And so, this has sort of been honestly, I believe, a special interest of mine throughout my lifetime, especially as an under-resourced, Black, indigenous centered person. And, you know, being a mid-80s, baby, so the IDEA did me no favors in terms of getting accommodations or anything at school. And so, when I was younger, I was diagnosed with developmental disability, but they didn’t really have anything in place for that. And then, as I got older, I was diagnosed Autistic. But even then, there was some, like, you know, they were always wondering about it. And that really came into play when I started working. And so, especially in my first jobs after getting my bachelor’s degree, which I didn’t start being able to go to college until my mid-20’s.
But there was, I think, really, the watershed moment for Epiphanies of Equity came from was I was working at a local public hospital, I was experiencing an intersection of racism and ableism, which I started to call racialized ableism. This was back in 2016, 2017. And, you know, what I had noticed with my Union is that they’re great. I was a proud Union member; they had a really strong anti-racism understanding. They had a good-ish Disability Rights understanding, in terms of IDEA accommodations. They did not have an understanding of racialized ableism. And that was what I was experiencing. And so, they really couldn’t help. And now, that is one, that’s one small example of, really, a multiverse of different issues, intersectional issues, something like that, where we have a tendency as a society to not look upstream to what are really causing barriers or toxicity to flow into what we’re seeing in front of us and the day-to-day, and the outcomes and results and things.
And we get hyperfocused on that, because that’s what we see, that’s what we feel the most intensively. So, we really put things in place at that reaction point, of the outcome point. And then, we have that frustration that things are not as effective or sustainable as we’d like. So, Epiphanies of Equity is sort of based on that history and really wants to do just that, is be helpful to have that epiphany of equity. And I always joke and say that when I know that my job has been done is when folks get to that place, you’re like, “Oh, oh, oh… Oh.” They do the three to four “Oh’s”, and I’m like, got it. And I think a lot of it is because we go through this — well, I think especially after 2020, because EOE really started in late 2017 to early 2018 — I think especially into 2020, I think we get to a place where we’re like, “I know that. I took all the trainings, I read all the books. I went to all the marches,” they have all these things. But honestly, I don’t think that we’ve really gotten to the taproot of the issue. And that’s what we really want to do.
Meg:
That is what we want to do. And you’re great at helping us have those quadruple “Oh” moments in your work and in your writing. One of them is your Rubik’s Cube metaphor. So, for folks who are still wrapping their minds around intersectionality, can you share your metaphor with our listeners?
ChrisTiana:
Yeah. So, I also, I got married. I met my partner at a peer counselor training firm. So, we are both neurodiverse and mentally disabled. And so, we always sort of joke and say, like, you know, what is your sort of special interest of Autistic — I’m the one that always reading and things like that. And he thought he was always a Rubik’s cube. And it’s interesting, because I think, even in terms of understanding intersectionality, I feel like the Rubik’s cube is interesting, because he’s one of those people who he goes and tries to find all the different types of shapes and sizes of Rubik’s cubes. Because the average, the average cube, one, either could do it, like, in 90-seconds kind of thing. I look at it, and I’m just like, eh. But I think that the beautiful thing about the Rubik’s cube to the actual metaphor is that, you know, we have a tendency to think about our traditional Rubik’s cube, if you, the first thing that comes into your head, it’s usually a finished one. And in the finished Rubik’s cube, each of the sides are homogenous with the different colors that they have. And in a lot of ways, we tend to look at, even if we understand kind of the concept of intersectionality, we tend to still look at it that way, where a person, you know, for me, so my intersectionalities would be the, you know, I think that Black and indigenous, I’m non-binary, I’m queer, I’m Autistic; I identify as Autistic, sick, and Mad, that’s like three of them right there. I’m a renter, I come from a history of being under-resourced, you know, there’s all these different sorts of things that come up, you know, I present femme in gender expression. But it’s not that simple at all. And so, really, what it’s like, it’s more like a Rubik’s cube. And it’s all mixed up. And different, that all those different colors are all mixed up into different sides. The difficulty is when you have a Rubik’s cube here on the table in your hands, there are the — and as I said, you’re looking at the Rubik’s Cube and looking at the Rubik’s cube, there are your intersections. There’s going to be the face that’s looking back at you. And there’s the basically we’re looking out to the world. And they’re going to be different configurations of colors, a face looking up at you is going to be your understanding of self and the face looking out to the world’s going to be their understanding of you. And I think the difficulty with that it’s not going to be the same. And we have a tendency as humans to not like complexity. And so, you might say, like, well, there’s reds and there’s blues and there’s greens, which means that you, “Okay, so, you’re a Black person, you’re Autistic, and you’re femme of center, and I read an article about people like you once. So, I understand who you are.” But for you, you’re like, “But it’s not red. This is rose. It’s not blue, it’s cyan. And it’s not green, it’s chartreuse. And if you knew what that meant, do you see the nuances and be able to help me more?” And I think it’s hard.
But there’s always, I think, the last thing I think it’s important is that there’s the top and the bottom as well. And there’s the sides. And I think there’s the parts of the sides where, in my head, I always love to believe how people can find resonance as they are probably experiencing their own sort of reflection with a Rubik’s cube and be like, “Oh, wait, you have all blues in the corners too. So do I. Like, we can resonate here.” There’s a part of this that sort of, that you could see on the top, that I feel that is where usually we are looking at, or at least Matt is looking at, my partner, to solve the Rubik’s cube. And I think there’s a lot of ways that we see, like, what, how do we move in space? And I think this is where masking, code switching comes in. That I don’t think people really, if you’re not in that space, I don’t think you get how difficult it is to have to bring in all of those elements at once. But what is going to be the configuration I need to be able to get to the next stage of the solution. How do I have to mask, how do I have to code switch, how do I have to show up in the space, how do I have the good the good client, the good patient script? How do I have to make sure they understand me? And there’s always the shadow areas underneath. So, the Rubik’s Cube metaphor, I think, in a nutshell is essentially, you know, really making sure that we’re not seeing people’s intersectionality in the discrete categories that — or and I think that data is important. As you can probably tell, I love data. You have to remember that all those numbers, or facts, or figures are really — they’re all quantification, really sterile quantification of an actual complicated lived experience with someone. And it’s way more messy and complex than we really give it credit for.
Meg:
That’s a lovely metaphor and a lot of really good reminders. And I know some folks listening are thinking, “Okay, I’m a white, cis, non-Autistic therapist supporting Autistic folks with all of their intersectional identities. Like, what do I need to be curious about? What do I need to learn? What do I need to unlearn?” So, I want to sort of segue to that. You have this article. It’s an oldie but goodie, where you say, “Our society operates on these principles of implicit, institutional, systemic, and historical biases, whether there’s awareness or intentionality or not. If there’s little to no conception of what it means to be an intersectional Autistic person, especially one who looks like me, the biases will manifest into the conflation of autism erasure or exaggeration within my intersectional body.” Can you also use this analogy about fish in toxic or boiling water to talk about how ubiquitous oppression is? It’s everywhere; it’s in every space. So, for our listeners, mostly professionals supporting Autistic folks, including family members, and we also have Autistic listeners who are any and all of the above, could you speak about how those of us hoping to support Autistic folks might be adding to harm, how we can keep ourselves accountable, and become accomplices instead of merely allies?
ChrisTiana:
Yeah. I will start with the first part with the quote, which it’s always, I think, it’s always cool. I always think that I can, I think I can get to sort of add to it. It’s sort of like, we were just watching Shrek. And so, it’s sort of like, layers, like the onion. That first quote, I think what I’m talking about in sort of the intersectional ratio, or the biases, and it’s how society operates on these principles. I think I was telling you before we recorded that a lot of this stuff, a lot of like sociology, social psychology, social policies, and special interests, I’m going to try to not be too nerdy in some of these things. But what are the things that, you know, I think can be helpful. Most folks have either read or heard of the Parable of the Cave, right? From Plato. And then, and for folks who haven’t, the Parable of the Cave is essentially that there are these three folks who are bound. And they’re only, throughout their entire life, seen the world through shadows that has been captured on the wall by this fire behind them. And there’s a world — there’s a world behind, you know, behind the fire around them, too. But they only see the shadows and collectively they create meaning of what those shadows are. So, they’ll see a certain shadow, they’ll call that ‘The Dog’. And they see another shadow, like, well, that’s, you know, that’s a car or something like that. And so, one day, someone’s restraints are lifted, and they are able to turn around and see that there’s all these other tangible things in the cave, and then they leave the cave. And they go and explore that, that there’s a world outside of the cave. And they look up in the sky and they realize that there’s ultimately sort of the Sun that creates shadows, and that shadows are, you know, they are not the actual tangible things. So, they go back to tell the people that they are constructing meaning out of shadows, but there is an actual true tangible thing there. And the people are like, “You are absurd,” that that can’t be possible, get out of here, that they, the person who has went out of the cave tried to lose them from the restraint, they kick and they punch and they scream. And they say, “Get out of here.”
And so, the reason why I think that parable really helps with it is because, I think, there’s a lot of times, not even just a lot of times. I will be as so bold as to say: there’s a lot of folks who do this work who really are really passionate about social equity, really passionate about their clients, really passionate about the work they do, their family, and that’s not to be denied if harm is to happen. There’s a both-and. And I think, you know, I’ve been even thinking, like, in some cases more than a both-and, just like an all-encompassing. There’s so many multiple sorts of possibilities. And at the same time, while you can love someone, because, you know with the fish in toxic water, we are socialized and conditioned in an environment and an ecology that historically, over time, whether, you know, especially based on certain cultural factors, or certain institutional or systemic factors, or even just how we have been primed in our body-mind, especially our subconscious body-mind to have implicit reactions, or those somatic responses around certain things, that we’re going to move to how we’ve been socialized and conditioned in that water. We’re going to understand the world based on the shadows on the wall that is all that we’ve ever know. We only know what we know.
We can have theoretical or, you know, academic exercises around things that we don’t know. But at the end of the day, unless you are really getting to like almost the abode itself, a level of mindfulness, the realm, the extent to which your intergenerational and epigenetic conditioning and socialization is impacting your day-to-day actions, thoughts, thinking and behavior, that’s gonna come out. And that’s not to be a value judgment. That’s not to say you’re, you know, you’re bad or you’re racist. I think I’m saying beforehand that there’s a difference between saying, “Hey, you’re a racist,” and saying, “Hey, you did a racism”, “Hey, you’re ableist”, “Hey, you did an ableism”, because to err is human, right. And so, I think that what’s really important for folks to understand is that we — one of the things I say a lot is when we’re trying to save the world, it’s really important to think about ways to save the world from ourselves. And if we could start there, we can, and we can really be open to failing forward, the idea that perhaps we might be fallible, that in our best intentions and interests, that we might be ‘rattling things off’, to use a term from adrienne maree brown, rattling things off of our body-mind that are the very things we’re trying to fight.
And, you know, I think what’s hard is going all the way back to the beginning, for me, is someone who looks like me, there’s a lot of different types of ways that the shadows of who I truly am has been constructed. I will say, my partner and I always want to go see the Barbie movie. And this will help explain this whole thing. I went to see the Barbie movie because social psychology, right. So, I wanted to know, from the pop culture element, what was causing all of this. And my partner and I never go to the movies. I think the last movie we saw in the theater was like… I don’t even know what it was because it was so far away. We were not married yet. And we’re going to be married for eight years, that should give you an estimation. And so, you know, I’ve been running for city council here in Seattle, and it’s the weekend after the primary, and my campaign manager’s like, “You have this one weekend off.” And I’m like, “Okay, let’s go see the — let’s go do something we never get to do,” leave the apartment. And, you know, I was looking at it from the pop culture element, but at the end of it, people who know me know, I do not cry just over things. There’s a handful of movies in my life that I’ve cried at. This is in the handful now. I think the first movies that I watched in my life I’ve cried at all the time is ‘Babe’, ‘Rent’. This is one of them. The reason why I cried is this. So, there’s — there was this meta experience I had that, really, I think, that tallies really well with this question and what I’m trying to say. Number one, I went to the Barbie movie understanding everything that people told me about it. It was this movie that was kind of about Barbie, but was really about feminism. And there’s this patriarchal piece that comes into it with the Ken, and it doesn’t really, it doesn’t really have a lot of representation for folks. And all of that is true on the surface. But when I read the, when I watched the movie, I think what really hit me was that I saw this story, if you look at it from what, like, all of those things, and absolutely there’s a lot to talk about. This is all true.
But if you take the eagle eye view, right, you literally sort of pull yourself away from the fact that it’s a Barbie movie, that it explicitly talks about feminism and patriarchy and things like that, and you look at what the through line message is, at least that I saw, is this beautiful, it’s this painfully beautiful story of social construct that stereotypical Barbie and all these other Barbies go into this existential crisis based on a constructed archetype of who they believe they’re supposed to be. And all of the products, downstream products of biases — implicit, the institutional, systemic and historical biases — or what it means to be ‘Stereotypical Barbie’, in quotes. ‘Stereotypical Barbie’ is supposed to be a very Margot Robbie type, right? And, you know, even if there is an intention to be through typical Barbie to bring, you know, empowerment to all marginalized genders, when she meets Sasha — hopefully, there’s no spoilers here, but you know what, we’re just gonna go with it — when she meet’s Sasha, she hears from this child that — she calls her everything but race, and even a fascist, right. And that really hurts her because that was not her intention to be something or someone that would lead the very person that she feels like her entire reason for existence to help would feel like she has harmed her so much, that she’s a fascist.
In this sort of space of feeling like if I can, I need to be perfect, and being able to come to an epiphany that, really, perfection is a construct. And the imperfection she had sort of in the social space, in it being reflected from someone from another side of the room, I think, shows that there can be a beauty, and a liberation, and a freedom in being someone who is more open to the possibilities of constructing as opposed to being someone who is beholden to performing the construct, and the beauty of being able to have the BarbieLand, you know, sort of still have an understanding of social construct, maybe not the lived experience and wisdom of social construct, but at least now another social contract that they can grapple with, with being willing, able, and open to go to a new space where they can live in sort of a truth where there’s constructs there, too, but you have more opportunity for that. So, I think that when folks and the family members, the professionals, the folks that we talked about how you want to be allies and an accomplice, I think there is a really massive piece here where it’s something that everyone should do for themselves. And everyone needs to give space for folks to do. And I think, you know, especially for Autistic folks, one of the places if you don’t know where to start would be to challenge biases around with the top three for me is employment, sexuality and romance, and independent living. And, you know, the last sentence I’ll say is, I’m someone who I was told all of my life that I would never be able to live away from my mom or out of a group home. And sure, my partner does a lot of caregiving. But I think that because my mom has always been an advocate, an accomplice for me, and fought for me to be able to create the own constructs of what I would like to see my life to be, I’ve been able to do these things.
Meg:
That’s lovely. I appreciate you naming some of those biases for us. And, you know, we’re trying to shift, especially I’m an OT, and there’s so much language around independence, and we’re really trying to shift from independence to autonomy, because we’re all interdependent, right. You want to be autonomous but interdependent. It’s lovely when partners can caretake for each other in ways that that really work and are supportive and meet everybody’s needs. I also really appreciate your Barbie movie metaphor. So, in this metaphor, the therapist or ‘Stereotypical Barbie’, possibly causing harm without intending to if we haven’t examined all of the social constructs, just to stick with the metaphor. And the enemy here is perfectionism.
ChrisTiana:
I would say this. Just like their ‘Stereotypical Barbie’, I would say that the easier metaphor for that will be for Autistic books because there is, just like ‘Stereotypical Barbie’, it’s like when you think about a Barbie, that is sort of like the archetype that comes to your head. I think a lot of — to that point around, you know, they either — you know, the biases will manifest into the conflation of autism or race or exaggeration, the intersectional body, right. When you think about an Autistic person, for the longest time, it was not someone who had my intersections, right. And I think even the biggest difficulty it was to get help was that folks are like, “Well, you have, you know, especially even now, you have this business, and you’re out there, and you’re able to talk and able to do these things. So, you must be ‘high functioning’,” which, I know, we’re trying to undo that, right. But, you know, there’s people in my life that we joke and say, like, if I didn’t have supports in my business, in my home, none of this would get done; it would all just fall apart. It’s like a sand dollar, right. It looks really great. And it looks really hard, but if you hold it too much, it will crumble. And so, I do think there’s a ‘Stereotypical Barbie’ sort of pathway for Autistic folks. I feel like in an industry with professionals, I feel like, just like in BarbieLand, there are all these other types of Barbies, right. And they talk about like, I’m Writer Barbie, and this is what Writer Barbie is supposed to do. And I’m President Barbie and this is what President Barbie is supposed to be do. Or even with Ken, like, I don’t even know what kind of Ken I am. I’m not even Surfer Ken, I’m just beach, you know, like, but I’m Beach Ken, right? And I think, you know what, when I worked at the hospital, I saw this happen a lot, where your OT Barbie or your Social Work Barbie or, you know, especially like if you’re OT versus PT Barbie. If you’re OT Barbie, but you believe in more so, like, OT with supportive assistive devices versus not. If you’re the person environment, occupation style, OT Barbie versus the accommodation kind of Barbie, right? And I think there’s all these different sorts of things where it gets really nuanced and it can lead to conflict, sort of like what happened with the Ken. I feel like whoever’s listening to this podcast, hopefully, you know, spoiler alert for the Barbie movie all over this. But I think sort of getting to, like, what they talked about what the Ken’s, right, is like, if you have a little, even if you’re all sort of in the same community, if you have these little differences, that they can lead to huge conflict. And unless you see yourself with all working together.
And I think the enemy here, I would say, is appeals to history, appeals to construct, appeals to authority, right. I think that there is — this was so — there’s so many situations that I probably didn’t say in my introduction before. I didn’t start being a consultant. I thought I was gonna go into counseling psychology and sort of more, maybe in administration of nonprofits or hospitals. I got my first master’s in nonprofit leadership and my second in public administration, but I was getting it in counseling psychology and community psychology. So, that’s why I was at the hospital. And I saw a lot of these things where people would say, well, this person came in. And they had this presentation. And, you know, usually this presentation wouldn’t mean that we would have to take this course of action. But you know, like, that’s what the DSM says, and like, yeah, the DSM isn’t perfect. But then if you look at, you know, this article that came out, and then you look at, like, the Association of Clinical Social Workers that have — not bill of rights, but best practices, or, you know, you take this continuing education course, that this is sort of what has, you know, the most evidence-based approach so far, and I agree, yeah, you know, we know it needs to be more innovative, but we don’t really have the data for that yet. And if you were to push back and say, well, but we might have qualitative data from our community, if we’re reading the articles that can be, you know, the real amplification of the most intersectionally impacted voices in leadership, like, if we’re reading the articles, if we’re listening to the patient responses and surveys, if we’re looking at what they are communicating with us in terms of the progress that we made. If we’re looking at that then we actually have contradictory data and, like, who are we going to believe? Are we going to believe the people who are actually, who are trying to help and what their qualitative data is? Are we going to believe folks who they have, they’re really nice and have PhD’s and they studied really hard and they wrote an article and it was peer reviewed, and it was published in a journal article and now it’s part of continuing education, but are they part of that community? Have you, have they had that direct, lived experience? And I think that that that’s something that I think is really, you know, I think that is the spell over the land for the professionals in this case.
Meg:
First of all, you have our number in terms of the different Barbies of OT, and that was perfect. I think that’s a really practical way to drive this home of what changes we can be making within our organizations of, okay, who are we listening to, and why? And who could we be listening to, and what’s the message there, not just to inform our own work, but at the organizational level within our clinics or school systems. What other changes would you like to see in these places that we’re working in? We’re working in clinics and schools and, you know, outpatient places and doing home visits. What can folks do, or what changes would you like to see in these organizations?
ChrisTiana:
The first thing that comes to mind is I would love to see more peer-based services. I don’t see as many peer-based services available. And, I think, particularly for folks when they are in situations where they might not know how to articulate it to someone who doesn’t understand it, like, embody it. And I think that’s really important. Especially, I think — and I think not just in terms of with Autistic folks, but across the board. It’s something that, you know, one of the reasons why I say one of the top three areas of bias to really look into is because me and my partner had gotten pregnant in 2021. And I only know the data around mortality disparities for Black birthing folks and their potential offspring. And a huge issue also is the fact that I was Autistic. And he is also neurodiverse. And he has epilepsy, and I have chronic health issues. And I have a medical record that, yeah, from 10 to 18 years ago, has diagnosis of psychosis. And when I was trying to talk with folks and explain to them what I was feeling, they didn’t get it. And they didn’t really have the big picture. They had like midwifery, but you couldn’t really find anyone who also, to say like, you know, the way that an Autistic person might explain, like, a pain they never had is going to be different, or the way that they might present if they have pain is different, which led to some really catastrophic outcomes, even after changing hospitals. That I saw that even when I was in the hospital, or even in school, when I was coming up, you know, I was going to middle school and high school. I’m a very stereotypical Y2K child, I think. Yeah, seventh grade would have had had been 1999, because the first week of ninth grade was 9/11. And then, I skipped junior year; I graduated in 2004.
So, if you think about the early opt in terms of what we had in public education, especially for Autistic folks, especially for undiagnosed with autism, undiagnosed with developmental disability, Black, under-resourced, non insurance having people, that was not very great. And, I think, that what did help me though, in that situation, which was interesting is I had a friend of mine who, I think, was one of the first examples of being a white ally in particular that I had. They were also Autistic, but they had insurance, and they were a white boy. And they, you know, they had all of the accommodations. I think that they were, they had a family where they were fighting against him being sent to ABA. So, we were the two outcast nerds who came together in school. And, you know, it was really one of the, I think, my mom talking to his mom about sort of both of our backgrounds was really where I think my mom learned about that autism, because my mom — and I’m the first person to go to college. They didn’t know, like, my mom didn’t have the language for it, you know, she only knew pop culture references and try to explain it to people. And so, I think, talking to his mom, she started to — his mom taught her the language to be able to advocate even stronger, which I think also shows a great thing about community. But he, you know, whenever, he would get extra time on his exam, and he would speak up. Whenever they would allow him to go to a study hall. And they wouldn’t let me speak up. Whenever we would be doing, like, you know, doing the same thing during recess and he would be left alone and I would be put into the box, he would speak up. And that also taught me a lot about that. I think that is the power of having peer support.
Peer support for Autistic folks to Autistic folks, peer support for parents to parents. And I think finding ways to encourage and increase the number of folks who are Autistic to be in these fields. I think, you know, as someone who went through a Division of Voc Rehab three times, it’s one of those programs with really great intentions. But I think that there are these barriers around something like that. If I were to go to Division of Voc Rehab right now and say, like, “I want to be a social worker for other Autistic folks,” they might be like, “That’s cute, we might be able to get you a case manager job,” right, they’re not going to see that potential. But I think that people in the industry, people in the work can advocate and be allies. And I think having, in the meantime, having peer counselors, peer support specialists, and being able to fight for the investment and the money to increase those training programs so that they are — could be lay professionals to folks, and have more robust investments and supports as they can so that there can be those peers.
The other thing I’ll say, you know, in addition to peers — I want to say this to you, if you’d like the consultant, the social equity consultant researcher needs to come out. Trainings are great. Please do trainings. Reach out to us for training, because we love to give you trainings. Trainings are not going to help as much as actual change management, and failing forward, and being willing to take what you’re learning and putting it into practice is, especially and if it means getting into “good trouble.” There’s a lot of things that will lead to social equity that are not going to be allowed until there is good trouble action. And my grandma was a Black Panther. Before she died, you know, I asked her about why I was seeing my family, like my mom’s generation, fighting for the same things, saying the same things, using the same protest calls as she talks about. And I wish she was still here, because as I saw Amadou Diallo, as I saw Trayvon Martin, especially in 2020, and it’s the same protest calls and the same call to action that my grandma had. I always think about something she said was this that the reason why — she would say racial equity or Black liberation, and with a social equity setting, it applies — the reason why we don’t have social equity is because either we don’t have the tools to actually deconstruct and reconstruct the society that we want to see. We have the tools, we don’t know how to use them effectively, or in the right configuration, or some combination of those.
And so, I always use the metaphor for trainings as, you know, in this, because this is something I do and I will own it and I know that there’s people out there that this will, this will resonate. But, you know, I will say, I want to get, I want to get more conditioned, I want to get more healthy. And so, I will, you know, go on YouTube and make a whole YouTube playlist of low impact workouts that involve resistance bands. And then, I will go to the store and I will buy every type of resistance band there possibly is. And then, I will get the little balance fall. And I will get the little foam roller. And, you know, I’ll get the yoga block. And I’ll, and sometimes I’ll sit there and be like, but I need to make sure I know what it is I’m doing so I can prepare. And so, I’ll sit there now watch all these YouTube videos about what the resistance band workouts are, sitting on it not doing it, sitting on the couch watching it. And I’m like, yeah, yeah. And maybe once I’ll do the resistance band workshop, or video. And I’m like, “Oh, I’m really, that was really sore. I don’t like that. But I know it’s important. So, I want to come back to it tomorrow.” And tomorrow’s like, I’m still a little bit sore. Maybe I’ll come back to it in a week, because I have stuff I gotta get done. If I do this, I’m gonna get sore, and then you don’t end up doing it at all. You can’t get mad at the fitness instructor. You can’t get mad at the exercise band. You can’t get mad at anyone that you didn’t, that I didn’t get conditioned if I be am just sitting there and watching and having a theoretical understanding of what I’m supposed to be doing with my body and those things. I have to do it. And if there’s pain, or if it means that I have to put aside that time, I do. Trainings, in a lot of ways, are like sitting on the couch and watching the workout video. Like, “Oh, that looks hard. Oh, okay.” It’s good to know it, it’s good to understand the theory, it’s good to learn the moves. But we have to actually then do it and work through what it means to fail forward or to have that pain.
And the last explanation really quick, I’ll say, you’ll hear me say ‘fail forward’ lot. I know sometimes that phrase scares people of like, “What do you mean by fail forward?” I want people to think about — this is what I do to help people understand fail forward. I want you to think about something that you are really, really good at. It doesn’t have to be in the industry. It could be like needlepoint, or it could be gardening, or it could be, you know, dancing, or it could be singing, or something that you’re like, you’re really, really, really, really talented in. And think about the first time you did it. Did you have that much talent and understanding and knowledge? No. You know, especially like with violin, you probably played the violin for first time. You’re like, “Oh, oh, okay.” And then, you know, you try, you think about, you know, maybe the thousandth time you tried it. And it’s probably better than the first time. And you probably didn’t sound as squeaky on that violin. But it also probably wasn’t, you know, you probably couldn’t play, still play to the level you could today. You had to continue to feel bored, you had to continue to figure out the strings, you had to build those calluses on your fingertips, you had to figure out ways to repair the instrument to put on a string, to reboot, to figure out what the right amount of rosin is, to learn the actual music theory, to learn how to write the sheet music. And then, you got to where you are today. But it takes — even though it takes that level of effort or change. And so, if there’s anything I would say, that if you’re trying to create change within your organization, there’s a lot of shifts that I think really the base of it is the peer-based services and amplify the voice of the leadership and those most intersectionally impacted because they should be the ones who are guiding you on what shifts. The organization’s need is going to be contextual; it’s going to be regional. Me, ChrisTiana, here in Seattle, Washington with my background cannot, in all good conscience, tell you what the Black Autistic folks in North Carolina are gonna want. But in order to do that, you need to have the peer-based services, you need to employ the voices of those most impacted, and you really need to be willing to fail forward and get into that good trouble and build those calluses on your fingertips.
Meg:
I love these shifts. And that’s, it’s a really lovely combination of things that we can implement in our work with having peer mentorship, peer counseling available. I think, especially for folks working with Autistic kids in transition, in those scarier times, going to middle school, going to high school, graduating from high school, starting work, having a baby, all of these really sometimes scary, sometimes dangerous moments in our lives that, as you said, folks who haven’t shared your experience are unlikely to understand. So, you gave us that. And then, who are we listening to, who is guiding us in our practices. And then, I like these internal shifts, too, being willing to try and fail, and try and fail, and try and fail and being willing to get in a little bit of trouble. That really resonates with our values that we’re sharing here at Learn Play Thrive and on the podcast. And also, you said that folks learn best through coaching, which we know this in our work, we know that we don’t just need to lecture at a parent so that they can try something new, that we need to watch them learn about what they’re doing, show them something new, support them as they try it, find out how it worked, right. We know this coaching process for our clients. And it’s powerful to think about, oh, that’s what we need for ourselves as well in trying to make shifts that we don’t know yet how to make in our work and in our organizations. Before we wrap up. Is there anything you want to bring us back to or share with our listeners?
ChrisTiana:
Something that I would say, too, I think I’d have talked a little bit about this before we started. Something I want to share, too, about — especially for folks who are listeners who are Autistic. I want to give props to my mom, again, just the kudos, right, because I think that the situation that I was in and I feel like it’s a whole ‘nother podcast episode to talk about how autism and psychosis can get conflated and lead to institutionalization and other sorts of things like that. But there’s a lot of that that happen, a lot of the seclusion and restraint. And I think that the person you see now, I think, is a product of a sort of a mask, I guess, I guess a mask. It is a mask that was created through about seven years of institutionalization all combined. Before then, I was — like, we talked about those constructed archetypes of Autistic where I was nonverbal, my mom and I still laughed about the situation where I had a guidance counselor who was like, “You need to put on a clean camisole,” the Y2K kids know that the camisoles always have to be underneath of everything, every shirt, right. So, we’re like, you have to find a clean camisole when you come to school the next day. So, I was like, okay, I can go next day. And I had on a clean camisole all over the previous camisole and the guidance counselor was like, “No, I need you to put on a fresh camisole.” Got it. So, I came in the next day. And I put on the third camisole all over the previous two camisoles. And I got to like four or five camisoles to wear. The person who I — the other Autistic person that I talked about was like, “He means that you have to take off the other camisoles, and then put on a clean one.” Oh, okay. So, that’s what I did. And it was really helpful, right? So, I think that like, I share that story because I think that there’s some folks who they see me today and just happen, or they’re like, “You seem really high functioning,” and I do think that there is a piece of this where my relationship with the institutionalization is complicated, because it was very traumatic. And it was very hurtful. And on the other hand, I have this mask I’ve been able to create, I’m able to do a podcast, which I didn’t know I would have been able to do.
I think that what’s really important, though, about why I share that it’s because I think that we live in a — and this kind of existential — but I think we live in a dynamic where it’s really overwhelming, and I want to acknowledge how really overwhelming it is to think about these really big picture things. And I think that I have developed a sort of default space in the huge, in the multi-dimensional and the complex, which in a lot of ways, I think, is made hard as an Autistic person, because I think that folks either dismiss that as info dumping or something else. And at the same time, I think there’s a lot of areas in our world, whether it’s this in disability justice, whether it’s environmental justice, housing justice, economic justice, labor justice, that if we develop a mindset of how interconnected and interdependent, how complex and messy, how multi-dimensional our reality is, I think that we could be, we could have, we could develop something else. If you have a guppy in a tank, there’s that one fish that like sucks on the side of the tank, and it sucks all the algae out. I think we can collectively have that fish come in, if we understand that, how that happens, or how we can sort of shift things out. So, I say that because I think it’s really important when folks are listening to some of these things, or when their social workers or their families are there for them, that they they understand that the impact that they might have in moving through space and really doing the internal work for Autistic folks.
I think, holding — I think, being in this society, there’s a lot of things that folks have constructed our shadows to mean. And in some cases, the shadows that we have are not even constructed, are not authentic at all as we try to move through this world, whether it is finding love or romance, whether it’s finding employment, maintaining employment, advancing an employment, whether it’s going to school, or starting a family, there’s a lot of those biases and those assumptions that they’re going to come around and they’re going to try to make a barrier to those progress. Because in a lot of ways, it’s not even just about the devices they have on our shadow, that often, other constructs, I think, they have on other shadows. And so, running for city council, one of the biggest issues I have been that not only are there certain assumptions and biases about who I am and my intersections, there’s also certain assumptions and biases around the archetype of who’s a good and viable candidate for office. And they don’t match, right. So, even if they were to not have negative biases around Autistic folks or Black folks or whatever, they might not see someone like me in that role. And then, in that dissonance, they create that bias. And that can be really hurtful; it can be really painful. It can lead to me sometimes feeling like that’s a little bit too big of a barrier for me to climb. And, I think, you know, everyone is going to know their own level of spoons. And it’s something that I’ve, I really thank my mom for, she’s someone who’s always told me, like, there’s no reason why you can’t. Like, there’s the mixture, there’s these different dynamics, right, that we would have to find a more innovative pathway toward, right. We have to make sure that you are safe; we have to make sure that you’re successful. But there’s no reason why you can’t do it. Like, just because it’s not set in place yet, doesn’t mean it’s not possible. And that sort of upbringing, and I guess, my day one ally or accomplice of my mom, and really fighting to this day, like, you know, especially when they didn’t want to put me in ABA, or they didn’t want to put me in a seclusional restraint, or I started going on that that’s tied to prison or school institutionalization pipeline, that she was like, you know, the teachers are like, “They’re not doing this right,” or, “They need to do this instead,” she’s like, why? Like, instead, saying, like, “My child can’t thrive in your classroom, what’s going on in your classroom, my child can’t thrive.” And I think saying that in the 90’s was really radical. But that approach has really helped me whether it’s starting a business, whether it’s getting married, or trying to start a family, whether it’s getting my master’s degree, whether it’s having a rental house, whether it’s running for city council, whether it’s speaking my truth to power in these articles, all of that comes from this idea of like, but why can’t it be me? And I think that it takes a minute to get to that space. But if there’s anything that I wish I could impart to other Autistic folks us that that is very much a possibility. And that it takes a critical threshold of mass of us to lay down the new pavement and new pathway towards a future where disability justice is centered. And I am always open for folks to talk to if they ever want to strategize or, you know, the camaraderie of what does it look like to achieve the dreams that society may say it’s not meant for us.
But, you know, one of the things I always say when folks say things like that, it’s like, I’m known for saying, “Watch.” Like, what do you mean? Watch. I was going to say something I’ve been doing really recently, and maybe it’s a good, maybe a good, quick story for folks to wrap, to synthesize everything. I was looking for a way to sort of have an outlet for, not to stimming, but just, like, sort of peace in my body after the pandemic, after what happened with Emerson, who was a potential child I had. And there was this burlesque, the School of Burlesque that was opening up in Seattle that was led by these two burlesque performers, whose names are Mx. Pucks A’Plenty, the other’s name is Slash Leo. And when I looked them up, they were both Black, disabled neurodiverse people of size. And the School of Burlesque was all around the folks in this sort of space. Like, how do you get to a space of feeling empowered and centered in your body-mind, but especially folks who are neurodiverse, mad or sick? I met this amazing person, Jacqueline Boxx, virtually, who does all of their burlesque dancing in a chair. And, you know, when it came time for my recital, I did, I was having a flare or I was very likely to blackout. And so, I did my whole routine around a chair. It was one of the things where, you know, you kind of have an option either to say hey, you did this class. Okay, great. And this is the thing you did and then you don’t do it anymore. Or they can introduce you to producers and things like that to start doing shows. And so, I started doing shows. And I think there have been some folks outside of the burlesque community who they’re like, “What? Like, but you say, like, you know that you’re ace, and you say that you’re Autistic? And I did not know Autistic people felt like that. Like, what are you doing?” And there’s some of the performances that specifically speaks to the nerdiness. Like, I just did a performance at LinkedIn, on Spongebob, where I steal a burger for my husband. He’s planted in the crowd, and I eat it on stage. And, you know, I think — but I think that there is this piece where internally in burlesque there’s a lot of folks who they’re also, like, when they make acts, I’ve had so many conversations with other Autistic, Autistic neurodiverse folks that are making their acts and it’s sort of coming to them in either synesthesia, or the stimming activity that when they’re, you know, when before they were in burlesque, they would listen to songs, and like, the way the music would lead their body to stim, that if you just sort of exaggerate those movements even more and put a bow on it, you’re doing burlesque, right.
And it was one of those things that I didn’t think that was a space that I would be able to do because when you think of burlesque, you think of a whole different construct, its shadow, than a bunch of Autistic, disabled, you know, assistive device users, drag kings, Autistic special interests in the form of performative dance on stage, and that is what it has been. And I think, if anything, it’s been one of those other situations that have taught me that there is, you know, again, when you’re trying to save the world, you need to think about ways to save the world from yourself. And that even includes how to save yourself from yourself. And that being in opportunities and spaces where you find community in places that you don’t even ever anticipate, is sort of like in Zelda where you hear like the [musical tune] ‘do do do’, sort of like the sound when you open a treasure chest, right. And it’s always so exciting to have that. But I would encourage folks to really think about, like, if there’s anything you feel like, “Oh, I can’t do that because I’m Autistic or have these things,” like, watch. I believe you can.
Meg:
I love it. Thank you so much, ChrisTiana. Tell us what you’re working on now and where we can find you online.
ChrisTiana:
Yeah. So, you can find, if you’re interested in consulting services, research services, training, speeches, panel, anything like that you can find us at one of two links. Now we have two domains. It’s either www.christianaobeysumner.com. ChrisTiana is spelled like ‘Christian’ with an A at the end, and Obey is spelt like ‘Obey’, and Sumner is S-U, M as in ‘Mary’, N as in ‘Nancy’, -E-R. So, there’s ChrisTianaObeySumner.com, or Epiphanies of Equity — Epiphanies being E-PI-P-H-A-N-I-E-S — epiphaniesofequity.com. So, you can go there, you can see some of the new staff there. Everyone at EOE follows disability justice community. We have two other associate consultants as well who have other areas of focus and expertise that are in different parts of the country. And if you are interested in the sort of campaign I’m running at Seattle, City of Seattle around being an openly Autistic city council person fighting for disability justice and other cool things at the city level and hopefully beyond, then you can find more about me at Vote ChrisTiana.
Meg:
Thank you so much, ChrisTiana. I’ll link to all of that in the show notes so people can find you and all of your resources. I really enjoyed talking to you today. Thank you.
ChrisTiana:
Thank you so much. I really appreciate it.
[Ending music]
Thanks for listening to the Two Sides of the Spectrum podcast. Visit learnplaythrive.com/podcast for show notes, a transcript of the episode, and more. And if you learned something today, please share the episode with a friend or post it on your social media pages. Join me next time, where we will keep diving deep into autism.
